Appendix Cancer Survivor's Blog

Back Again!

2011-12-22T15:08:00.003-06:00

Wow, I can't believe it's been so long since I've posted! I've had a really tough semester at school. I am attending two universities, Purdue University for my masters degree as a Clinical Nurse Specialist and Loyola University Chicago for a Graduate Certificate in Oncology. Loyola is a very tough school (lowest B 86%, lowest A 94%). I love my Loyola classes the best as though they are very tough (lots of microbiology, biochemistry etc.), they are all cancer related and I am learning so much. So far I've gotten all As in my Loyola classes (though one was an A-). I am very proud of that. This semester I paired very difficult classes at both universities (I usually try not to do that!). I was in way over my head and have been very stressed out for awhile!! But finally.......this semester is over. I am so grateful to be done. After this semester I'm cutting back on my classes for future semesters. I won't do this to myself again!

At any rate, I've usually tried to post here once every week or two, and it's been 2 months! I am so sorry! I've still communicated with many newly diagnosed appendix cancer patients over the semester....one diagnosed at only 28 years old just months after giving birth to her first child. My heart truly goes out to her. Luckily, she got to a specialist and had HIPEC surgery, I am praying she does well. I want everyone to do well.

Another newly diagnosed patient was upset that her doctor admitted he knew little about appendix cancer and it's treatment, so immediately referred her to a HIPEC specialist. I told her she had an excellent doctor. Most know little about appendix cancer (I'm sure little to no time is spent on the subject in med school, or nursing school....when we covered GI cancers at Loyola, no mention was made of appendix cancer). The best doctors are the ones who discover our cancer, are willing to admit they know little about it and send us to one of the few experts who DOES know how to treat us! For what it's worth, one of my Loyola projects was to teach a subject to my class....I did appendiceal and other abdominal cancers, peritoneal carcinomatosis. I was able to make many nurses aware of cytoreduction surgery and HIPEC for our cancers.

For those of you willing to help, we still need more patients to participate in the PROGRESS initiative I am working on in conjunction with Dr. Esquivel and the American Society for Peritoneal Surface Malignancies (I have kept up with that this semester too!). If you've had or will have HIPEC surgery and would like to help, email me at carolyn@appendix-cancer.com for more information, and thank you in advance!

I guess what I want to talk about is what I am learning at Loyola. Personalized cancer treatment and molecular therapeutic targets are where cancer care is going. One day soon chemotherapy may be a thing of the past. All cancer is genetic. Only a tiny amount of cancer is inherited, most is caused by genetic mutations we pick up as we live our lives. As it turns out, two people with the same cancer (ovarian, colon, appendix) can have very different genetic mutations of their tumors. I don't know if you are familiar with HER2 positive breast cancer (very responsive to the new targeted drug Herceptin), but it turns out a certain percentage of stomach and colon cancers are also HER2 positive. HER2 positive stomach cancer now has FDA approval for treatment with the breast cancer drug Herceptin, though for some unknown reason HER2 positive colon cancer does not respond to Herceptin. They are starting to identify enzymes in the blood related to genetic mutations that cause cells to uncontrollably reproduce (cancer) and are finding ways to block these enzymes with new drugs (pills and not IV chemo) that can stop certain cancers....an example is the pill Gleevec given to those with a form of leukemia. Gleevec can cause a prolonged remission from the disease by blocking an enzyme. These drugs only affect the cancer, unlike chemo drugs that kill all rapidly dividing cells (good and bad, like our hair cells and cells of our GI tract, so also cause baldness, diarrhea, nausea and vomiting). Gleevec is an example of a targeted therapy...it targets the one abnormality that causes the particular cancer. 10% of those with a usually fatal lung cancer have a genetic mutation that responds to another new drug, Tarceva. Tarceva is a pill, not IV chemo. I went to a research presentation and an oncologist showed us a patient's chest X-ray, many tumors, advanced lung cancer. He had the specific genetic mutation that made him a candidate for Tarceva. He showed us another chest X-ray from that patient taken just weeks after he was on Tarceva. No tumors at all, and he has been tumor free for 5 years while on the drug.

It takes many years (about 15, if I remember right) and billions of dollars to develop just one of these new drugs, so it may be awhile before we see many of them. Many are in development. Developing these drugs also depends on patients willing to participate in clinical trials. But wouldn't it be great if chemotherapy and sitting for hours in infusion centers became a thing of the past? Maybe one day.....

This is a link to an NCI site about targeted cancer treatments: Targeted Cancer Therapies.

Promise to be back soon!

Heat it to Beat It

2011-10-21T22:03:00.001-05:00

Got notice that over 700 attended this years Heat It To Beat It walk in Maryland, and over $114,000 dollars were raised for research! It's only the second annual walk and was SO successful! The money will all go to research. I hope those of you who read this blog can attend next year, I'd love to meet you!

Heat it to Beat It 2011!!!

2011-09-20T17:23:00.001-05:00

I just returned from Baltimore. Was a great trip. I met several appendix cancer survivors, some of a year or less, others longer term survivors.

Sunday was the day of the walk, and I was SO inspired. I don't know the exact numbers yet, but I think 800-900 attended. The walk was SO well done. It's a beautiful walk in Baltimore's Inner Harbor. The walk offered DJ assisted dancing before and after the walk, an exercise coach led before-walk warm up exercises, there was plenty of bottled water and snacks for the walkers, and an opening talk by Dr. Sardi . I was called to the stage by him and had handed a microphone. Had to do an impromptu short speech! Caught me off-gaurd, but I was glad to do it! I had a booth for the Appendix Cancer Connection, and the PMP Research Foundation and PMP Pals were represented at the walk also.

Here are some pictures!

Registration before the walk....lots of people!

Pre-walk warm up exercises!

Dr. Armando Sardi welcomes the crowd.

The walk begins!

The walk continues!

Post walk dancing complete with DJ!!

B&W photo of me and Dr. Sardi!

The walk was terrific! I hope you are able to come next year....like me, you will be inspired!

In Baltimore!!

2011-09-17T21:28:00.000-05:00

I'm in Baltimore for the 2nd annual Heat it to Beat It walk! I'm getting better at knowing where I'm going and using the light rail, a commuter train. The walk is held in the center of Baltimore, the Inner Harbor, but hotels there are very expensive, so I stay near the airport in a nice hotel that is 1/4-1/5 of the cost of an Inner Harbor hotel ad use public transportation to commute. Only $3.50 buys you an all day pass to use all of the trains and buses...can't beat that ($40-$50 one way commute to the harbor via cab). After walking miles downtown today, I attended a very nice and well-attended reception for the walk at Mercy Medical Center tonight. I got to meet some other great survivors! One is an 11 year survivor. She also initially received a terminal diagnosis, and after her first HIPEC surgery it recurred three years later...and she received a second terminal diagnosis. She had a second HIPEC surgery 7 years ago and has since been cancer-free. The walk is tomorrow, and so far 671 signed up prior on-line, more signed up tonight at the reception. Will let you know the grand total when I know! I will post pictures of the walk when I return home (forgot my card reader).

Sept. 11, 2011

2011-09-08T20:40:00.000-05:00

We are approaching the 10th anniversary of Sept. 11. I read that there may be terrorist attacks planned for the anniversary, possibly car bombs in DC and NYC. It made me worry, made me feel sad. I remember how depressed I felt after the Sept. 11th attacks. I was supposed to be in NYC on Sept. 11, 2001, but instead went there Sept. 5th and 6th. I saw the Twin Towers and took pictures of them just days before they went down. I was there again sortly after and visited Ground Zero. We lost 3000 Americans that day. The whole country was saddened.

But I think now....I've been in the cancer community for 10 years. We lose 500,000 Americans a year to cancer. The same as losing 3000 Americans every other day, but we don't feel the shock and sadness at that statistic as we did the Sept. 11th statistic. Cancer terrorizes us too. It is a much bigger enemy. I think of the saying, "one death is a tragedy, a million is a statistic", and it really is true. It's how our minds work.

I looked it up once, we spend a fraction of the money on cancer research as we do on fighting terrorism. Makes no sense....

My Apple Tree

2011-09-03T18:37:00.002-05:00

Don't know if I'm being sappy or indulgent or sentimental here, but please bear with me!

Before my cancer diagnosis, I bought an apple tree. We'd had a large above ground pool in our backyard, which we'd removed, and I wanted TREES in our back yard to fill the space. I thought a fruit tree would be nice, so bought a self-pollinating green apple tree. After a few years, it actually had lots of apples, and they were the best apples I'd ever tasted. One year, just after my cancer diagnosis, I notices we had a worm problem with the apples, so I decided to spray the tree with insecticide. A few days after I sprayed it, the leaves started dying, and I realized my mistake...I'd sprayed it with herbicide instead of insecticide. Soon branches started dying. I pruned the tree many times hoping that when I removed the dead wood, enough of it would survive to keep the tree alive. As I did that, I felt I was "debulking" it, much like my own cytoreduction surgery. In the end, all of the branches died, and I had only a dead trunk. I cut down the trunk, I'd killed my apple tree. It was gone.

But the next spring, a small shoot appeared where the dead trunk had been. The tiny leaves looked a bit like my old apple trees leaves, so I tried to nurture it. The next year the leaves came back again. Over the next several years, I nurtured the small plant, and it grew to a small tree. No blossoms, no apples, but I kept nurturing it anyway. I wasn't sure if it was a tree or a big weed, but I kept it.

This year, my tenth anniversary cancer-free, my tree bloomed...and it has apples again! I picked one, and it tasted GREAT!

My apple tree now reminds me that when all hope seems gone, just a small bit of hope can grow. It can become whole, be fruitful. That even after devastatingly hard times we can be reborn.

As a side note, I looked at my apple tree today, and many apples were gone, there were only three remaining. Balanced on my fence-top was a half-eaten apple. We have raccoons and squirrels in my yard, and they never cared about the apples before, but now my apple tree seems popular!! But I don't mind.....I think hope is something to share. As long as they leave me a few....

Our kids...

2011-08-29T22:27:00.001-05:00

One thing I noticed as a cancer survivor, my perspective in parenting changed. I've recently communicated with other cancer survivors who share my view. Many non-cancer patient parents fear their kids growing up and becoming independent and not needing them. They wish for days when their kids needed them, wish they were still young, dependent on their parents, in a sense.

Not long after my diagnosis, when my kids were 10 and 11, I wanted so much for them to achieve independence and adulthood. I wanted them to be able to survive and thrive without me. I wanted them to have dreams and ambitions and goals that surpassed their need for a mother. I didn't want to be central in their lives anymore. After I was diagnosed, one of my daughters told me she would want to kill herself if I died, as she couldn't imagine living without me-she wanted to go to heaven where I would be. That scared me. She had so much to offer, so many gifts to give to this world. So much purpose left to achieve.

A cancer-survivor friend I recently spoke with had a very aggressive cancer, and is now 5 years cancer-free. Her children are age 14 and 8. She said she pushes them towards self-sufficiency and independence. She never wishes to go back to the old days when her kids were younger. I am the same. My husband and I were empty-nesters for a year, and I didn't have any of the issues of grief and loss other parents have. I celebrated my kid's independence. I was thrilled my kids were making a life of their own away from me, that I wasn't central anymore, that they had hopes and ambitions that didn't include me. Now I think parents that want their kids to remain dependent on them are kind of selfish. I want my kids to fly on their own wings! I'm so glad I was here to give them values, dreams and hopes as they grew up. But my ultimate goal is that they can live a full life without me. As long as I am here, I want to have a good relationship with them...but I don't need them to need me as they used to.

Can you please help us with PROGRESS?

2011-08-18T09:26:00.002-05:00

I've written here before that I am on the board of a new medical organization, the American Society for Peritoneal Surface Malignancies. Peritoneal surface malignancies are cancers, like appendix cancer, that spread into the abdomen. The state of the art treatment for these cancers is HIPEC or EPIC, chemotherapies administered directly into the abdomen. IV chemotherapies have limited effectiveness on these cancers, where as HIPEC snf EPIC can often allow for prolonged survival, as in my case....I am 10 years cancer-free.

We have some mountains to climb, though. We need to make this therapy recognized as effective and covered by all insurances (some won't as they consider it "experimental"). We need to gather information to help document it's effectiveness. We need to make the medical community more aware that this treatment is available. We need to know how soon patients see a specialist after diagnosis and how they are referred to specialists (self referral, MD referral etc.) and what treatments they receive before seeing a specialist. That information has never been compiled. There is a great need for this information to help promote specialized treatment for those diagnosed after us.

To help overcome these mountains, the American Society for Peritoneal Malignancies is creating a database, PROGRESS, of information answering these questions. Hopefully the answers will one day be compiled and published in a peer-reviewed medical journal, which will increase awareness and advance our cause in the medical community.

I've had several patients ask me how they can help in this regard, and here is a great chance! I have a PROGRESS questionaire and I am asking patients who have or will receive EPIC or HIPEC treatments to PLEASE participate!! You confidentiality will be maintained. It is really important we get patients and their surgeons to participate!! If you would like to participate, please email me at carolyn@appendix-cancer.com and I will email you the form and help with any questions you have. Again, PLEASE help!!!

Two Miracles in One Family???!!

2011-07-28T23:19:00.002-05:00

All of us diagnosed with cancer know how the bottom can fall out of our lives at any time. We know we are not promised tomorrow. We live with that.

I recently went to lunch with a friend who is our local chapters "Compassionate Friends" director. It's an organization for parents who have lost children. She recently lost a second child, and she found others who had also. At lunch we talked a lot about her second loss. How heartbreaking, I can't imagine. She said now she has no fear of death, as it's the only hope she has of seeing her children again. She met another parent recently who had lost one child and now had lost another to a car accident.

I got a phone call last Friday. If I don't know the caller via caller ID, I don't usually answer. But the caller ID had a name, though it was from an area code I didn't recognize. On a whim, I decided to pick up the call. When I did, the caller asked me what my name was. Weird. I asked her what HER name was. Then she asked if I had a daughter by the name of Angela. I said yes. She told me my daughter had been involved in a motor vehicle accident, she was at the scene. I started shaking uncontrollably. I asked loudly and repeatedly if she was okay. I knew she was driving home from a southern part of our state.

She said my daughter had rolled her vehicle but appeared to be okay, with only scratches. She put my daughter on her cell phone...my daughter was hysterical, apologizing and apologizing for wrecking the car. I didn't care a bit about the car. My daughter was sobbing. I was terrified. I talked to the police at the scene, they told me the car was totaled. I told them to call an ambulance and take her to an ER to be checked out as it was a bad accident. I was terrified, The good Samaritans who had pulled her out of a window of the inverted car stayed with her until the ambulance came. They later called me to tell me what hospital she would be taken to. When I got my act together, I packed a few things and my other daughter and I embarked on the 2 hour trip to the hospital she was taken to, We arrived just as she was being given ER discharge instructions. She was tearful and traumatized, but well. I was so, so grateful.

She had several items in the car, including a $1500 laptop, I got a hold of the police, they had towed her car to a body shop 45 minutes away. I left my daughter and her sister at a shopping mall with lunch money while I went to go retrieve her items. I figured she didn't want to see the car. When I saw the car at the body shop, I started shaking again. The car was totally destroyed, mangled. Roof caved in, gas tank ruptured, both axles broken, windows crumbled, doors mangled, hood crumbled. I didn't even know if it was safe to enter to retrieve her items. How had she survived that with only scratches on an arm and a leg??? A miracle for sure.

I retrieved her items....with difficulty and a few cuts and bruises. Glass and jagged metal everywhere. There was an inch of gravel and dirt on the floor of the car.We got home and tried to get the gasoline smell out of the items I had retrieved. Her computer, amazingly still works,as does her MP3 player and cell phone, though the computer battery casing was damaged. The only loss was her glasses, I'm sure they left her face when the windshield shattered. We can replace those. She doesn't remember a lot of the accident, maybe God's way of saving her from the trauma. The ER said they had never seen anyone with so few injuries in a roll-over.

I am so, so grateful. Two miracles in one family. We are truly blessed. As a nurse, the Good Samaritan act offers limited coverage if I stop at the scene of an accident, so I've been reluctant to stop. From now on I will.

Heat it to Beat It 2011!!!

2011-07-19T22:36:00.004-05:00

Just wanted to let everyone know that the Heat It To Beat It walk is back again this year! I traveled to Baltimore last year for the walk and it was GREAT!! It is a beautiful walk in Baltimore's Inner Harbor, and funds raised go to research for cancers like ours that spread into the abdomen (peritoneal surface malignancies). They were great about providing snacks and drinks.....even chair massages etc. after the walk! A DJ was present and they even had warm up dancing!

Last year, the inaugural walk hoped to have 300 attend and to raise about $50,000, I think. In the end 500 attended and $100,000 was raised, it was a HUGE success. I was able to meet and have dinner with Dr. Sardi there, which was a real thrill. We had communicated via e-mail and phone for 5 years, but had not yet met before then. He is someone I truly admire; he is an excellent HIPEC surgeon who tries to give even those of us with high grade tumors and extensive cancer a chance. He is passionate about research into our disease. He is also a very caring and easy to talk to person. I truly have him on a pedestal. I hope to get to hang out with him again for a bit this year. I plan to go every year, and this year I think I even have enough frequent flyer miles for the trip! Baltimore also has a great rail system, I stayed at an inexpensive hotel near the airport (Inner Harbor hotels are VERY pricey) and the hotel would provide transportation to and from the railway, which cost only $3.50 for an all day pass. The train went straight to the Inner Harbor. It was great! I'll stay in the same hotel this year as it had a perk I LOVED.....free milk 24/7, I love milk and never seem to get any when I travel. First hotel I've visited that had free tea, coffee AND milk!

Last year I had a booth to represent the Appendix Cancer Connection at the walk and hope to this year also.

I've communicated with many of you via phone and email, and if you attend the walk, please look me up, I'd love to meet you in person! The link to the walk's web site is here: Heat It To Beat It.

Please try to come!!! You'll be inspired! If you can't attend but want to sponsor my walk, my site is Carolyn's Heat It To Beat it Site. Donations for sponsorships will go to Heat It To Beat It research!

2011-07-05T21:35:00.002-05:00

Sorry I've been away so long! I like to post once weekly, but am really behind! Too much school!

In my palliative care class, we had to interview someone different from ourselves about their thoughts on death and dying from a spiritual perspective....I interviewed my Catholic neighbor as I am unfamiliar with Catholicism. Most people I know are pretty much like myself, I'm sorry to say! I wished I'd had some Muslim or Buddhist friends. I need to diversify!

One woman in my class interviewed someone from a clannish blue collar working group in the Appalachian mountains....people who lived near or at the poverty level. I thought hers was the most interesting interview.

In their culture, if someone was in hospice and expected to die, they had something similar to a wake with the dying person present. A sort of party with music, food and dancing. People shared their memories of the dying person,with the dying person present. They had a video of pictures of the dying person at the party, and everyone could go tell the dying person how much they meant to them, say their final goodbyes in person.

They also had a raffle and silent auction with money raised to help for burial (as none of them could afford it) and to make the dying person's last wishes come true....to visit a place they wanted to visit or to fly to see a distant relatives etc. In a strange way that seemed kind of morbid, but on the other hand, it seemed kind of great! Wouldn't you in some ways want to hear your eulogy while you were still here? To leave this life knowing you'd made a difference to people, to be celebrated while you were alive instead of after you were gone?

I attended recently the funeral of my friend's daughter. She was only 27. My friend had lost her only other child at age 25 five years ago. Many wonderful things were said about the daughter. She'd been valued and loved. I wish she could have been present to hear how much she'd been loved and appreciated. To have seen the video of her life and photos of her life at her wake.

Are we doing it backwards?

I used to work at a hospice at a volunteer. I worked with dying patients, and I could talk to them about their feelings and fears and thoughts as they were dying. It was a good experience.

For my palliative care class I had to do a narrated Power Point presentation. We all chose our topics....I chose near death experiences, visions of the dying. I've read lots of books about that, and the cool thing is, of those who are conscious near death, 50-67% experience near death visions of angels, of heaven, of those who have died before them coming to take them home. My neighbor, who died of pancreatic cancer, saw her husband, who preceded her in death by 10 years, sitting in a chair in her room in the days before she died. Another friend who had a sister died of colon cancer at age 30 said her sister saw angels in her room in the days before she died. I've read several books by hospice nurses speaking of these visions...of people who at the time of their death felt that they were only crossing from one room to the next. Who were accompanied to their next part of life. A good book about that, written by hospice nurses, is Final Gifts.

While I am a cancer survivor of 10 years, and feel that may mean "cured", a word not often used in the cancer community (as most would say I am only in long-term remission), cancer has left me feeling always vulnerable. I know of those with my particular cancer who've had recurrences at 14 years. I know how the bottom of my life can drop out any time. I don't take tomorrow for granted. I no longer assume a future (at least here). I have gotten older..which implies vulnerability in itself. I know my days are numbered.....if not by cancer, then something else. We are all born terminal. We need to contemplate that and come to terms with it. In that sense those of us with cancer are ahead of the game.

Did I tell you this story?

2011-06-25T23:18:00.003-05:00

Post cancer, I had had so many doctors (16-17 at one count), and spent so much time in medical facilities for appointments,scans, tests and chemo, that when I was ready to surface, the last place I wanted to be was a medical facility (hard to go back to work under those circumstances when you are a nurse). So I didn't go right back to work. But I am used to being busy, and felt I needed to do something good with my life, so I played piano a lot for institutionalized seniors a lot (was great to be around people who got to be OLD!!!). Even though the elderly had deteriorating bodies and used canes and walkers, they were alive in their 80s!!! I dreamed of being able to get old, even if it meant using canes and walkers and having wrinkles.

I also delivered Meals on Wheels to the elderly and handicapped (nothing new, I'd done that for many years prior). But I felt I still needed to do something more. A soup kitchen opened up in a church near my home, so one day I just showed up and asked if they needed help. They said "sure!". They really had every thing covered and didn't need me to do much, but I stayed anyway, it was a good thing. Since there wasn't a lot that needed doing, and they had a piano in the hall, I played piano for those eating, it gave me something to do.

Over time I got a little more involved in the soup kitchen. Then one day, the person who managed the soup kitchen said she would be out of town for 6 weeks, and the kitchen would close unless some one offered to take charge. Don't know what got into me, but I said I'd do it. I created soup recipes from compiled recipes on-line (I don't like to cook!)...at any rate, the soup kitchen did very well the 6 weeks I ran it. Then the woman who ran it came back and said she was moving to another state...did anyone want to take it over? Since I'd done it for 6 weeks, I thought,why not?

I bought the groceries with the same frugalness I used at home. We had a basket there...."donations accepted but not expected". Since it was open to the public, not just the poor and needy,we had many come. Our numbers increased from 30 to over 100. I still played dining music for the guests, requests included. We all sang happy birthday to anyone who came on their birthday. It was a great thing! We had the homeless, the poor, the lonely and even business men in suits come as they enjoyed the food (they left big donations in the basket). My kids volunteered there in the summers. The soup was so popular we even published a free soup recipe booklet for the guests.

We ran into a problem, as I shopped cheap and many donated....we began to turn a profit!!! It was a kind of crisis! I called a meeting of the soup kitchen staff about our profit problem. We decided to donate the profits monthly to the needy. We donated to a family whose child needed surgery, to a woman newly diagnosed with cancer, to the Haitians after the earthquake, we put together 30 Thanksgiving baskets for the needy.

A local columnist went incognito to all of the soup kitchens in our county and then published an article with "soup kitchen reviews"...ours came out on top!!! He was intrigued by me and later interviewed me for an article...it was great and helped get information out about appendix cancer.

The woman who started the soup kitchen moved back and wanted to take it over again, so I gave it back to her. I volunteered there still for a few years, then got busy with work (back to the hospitals!).

My church just bought a new building with a full kitchen and dining area...I miss my soup kitchen so offered to start one there! Don't know if they'll take me up on it, but I hope so! I know how to make mass quantities of 15 different soups!

Ten years post diagnosis....

2011-06-19T22:05:00.001-05:00

I am ten years post my life-changing cancer diagnosis. I am so,so very grateful I lived to raise my kids to adulthood...they were 10 and 11 when I was diagnosed and are now productive adult members of society. They need me much less than they did then, and for that I am grateful. I am not as central in their lives now, and for me that is a good thing. I celebrated vs. dreaded their leaving the nest...it was a gift for them to leave me and not for me to leave them. My perspective is different than most parents.

Tonight I went to the Caring Bridge site of an appendix cancer patient I've followed for a few years. We've communicated on and off for several years, but not recently. She also had signet ring appendiceal cancer and had been through 2 HIPEC procedures..with recurrences following both. I learned she died last month at the age of 33. So young. I've developed friendships with several appendix cancer patients who have lost their battles in the end. I had a close friend my age, also a nurse, who was in med school and doing well. She had a lower grade appendix cancer than I had and so much to live for...she also lost her battle a year ago. I had another appendix cancer friend from the Philippines who had only been married for 5 years and who had two very young children...she also lost her battle. We were close, we communicated frequently even as she was dying. She sent me gifts that to this day I value. I think of her every time I look at them. I've lost many friends. I don't know why I survived and they didn't. When I finally get to heaven, there are so many I want to meet and spend time with. I wish things had turned out differently. But I also know of many survivors, like myself.

I was researching survivor guilt on wiki tonight. I feel badly that I survived when others haven't, but I don't think I have survivor guilt. During the sermon at my church today,they spoke of a woman who experienced the terrible poverty of those she met in Africa while on a mission trip. She said she didn't feel guilty for her relative wealth at home,though...it was a gift from God. But she said she knew how important to her to be grateful for that gift. I think I'm much the same....and I think I need to use the gift given to me to help others. I do try. I'm not interested in Facebook on a personal level, but my website designers created a Facebook page for my Appendix Cancer Connection organization, and it has become a support group of sorts for those diagnosed, for which I am very grateful. You can check it out at Appendix Cancer Connection Facebook.

Just for fun, this funny youtube clip was presented at my church today (the topic today was gratitude)....and I could totally relate, I grew up with the black rotary phones! I also still always request a window seat on flights...I still feel the "wow" factor when I see the clouds and our country from the air! Check it out: Everything's Amazing and Nobody's Happy, it will make you smile!! We have so much to be grateful for!

Back Home

2011-05-22T11:18:00.000-05:00

We are back from Washington DC....it was a busy vacation! I had a list of things I wanted my family to see...the monuments, Union Station, Ebeneezer's Coffee shop, the National Zoo and botanical gardens adjacent to the Capitol....the last two are things I wanted to see on previous trips to DC but didn't have the time for. Ebeneezer's coffee house is like a really nice Starbucks with a big basement that is used as a church. It was formerly a crack house. Mark Batterson is the lead pastor there, and I've read most of his books. I went to church in the basement on a previous visit. Our current church is using his a s a model. We saw the monuments twice; first on a 6 hour daytime tour that included lots of time at the monuments and an hour boat tour of the Potomic River. We also went on a night tour when the monuments were lit up.

I love DC trivia...there are no skyscrapers as there is a limit to the height of buildings (no new building may be more than 20 feet taller than the width of the street in front of it, or greater than 130 feet tall). Because of that, many buildings have multiple levels of basements. The Pentagon is the largest office building (I believe in the world). It has 15 stories UNDER the building! When I worked on Capitol Hill, many buildings had at least 5 underground floors. Because they can't build up,space in DC is at a premium. I haven't yet been at a hotel that has a pool. An acre lot in DC goes for 10 million. Union station is a train depot that used to be a mecca for the homeless and drug users. The city remodeled it and now it's akin to a combination mall/train station with many restaurants and shops. At Union Station there is a replica of the Liberty Bell...it was replicated to include a typo on the original Liberty Bell...Pennsylvania is spelled with only one N.

We had a bit of time the last day...I had no more that I had wanted my family to see, so I left it up to them to do what they wanted our last half day. My daughter wanted to go to the National Archive...I'd never thought to go there. It turned out it was amazing. We saw the original hand-written Declaration of Independence. No computers or typewriters used then. Pen (feather quill pens) on sheepskin parchment. We also saw the original Constitution and Bill of Rights. I actually saw George Washington and Abraham Lincoln's signatures....Abraham Lincoln had beautiful handwriting! So many signatures of people I've learned of in history classes and books. It made them seem real, history came to life.

And now I am officially 10 years cancer-free!

Vacation!

2011-05-14T18:25:00.000-05:00

We are leaving for Washington DC tomorrow, our latest family vacation. I'm glad we do that,we have a tradition of taking a week every year to go somewhere else as a family. My kids are adults now, but still like our family time. Lots of adventures!

Washington DC was my idea. I've been there twice...once for an AACR conference and once to work on Capitol Hill with the PEW Foundation. I'd never wanted to go to DC...no interest in politics or history, but the first time I went for the AACR conference, I fell in love with the city. There are so many stories and so much trivia about the city that is fascinating. Twenty Smithsonian museums, all free. It's a beautiful and clean city, with sculpture gardens and works of art everywhere. I decided my husband and kids need to see DC at least once in their lifetime! The last two times I missed the U.S. Horticultural Gardens and the Nation Zoo...we'll see them this trip...giant pandas! I love that you can almost cross the streets and be in a different state.

We fly out tomorrow. Another cool thing is that my ten year cancer-free anniversary will be while we are there...on the 16th. Best way to celebrate it with the people who mean the most to me! Can you believe I'm almost decade past a terminal diagnosis???

A few things!

2011-04-27T22:06:00.001-05:00

Sorry I haven't been writing as often, life has gotten busy! Mostly school....

I talked to a woman diagnosed with appendix cancer today....she was told she was terminally ill (as I was initially) by a doctor not familiar with appendix cancer. She is devastated as she has four young children. I know of many others who are told the same thing. It's a common prognostic by those unfamiliar with our rare disease. We ALL need to be seen by an appendix cancer specialists familiar with our disease when we are diagnosed. Usually we have to travel as there are not specialists local to us (I traveled 750 miles). If you are newly diagnosed, PLEASE see a specialist before making treatment decisions! We have to be our own advocates. Many very good surgeons and oncologists just don't know enough about our rare disease, they don't see it often. Specialists have seen hundreds of cases. I had an initial "poor prognosis" by one oncologist and terminal diagnosis by another and am weeks away from being 10 years cancer free.

Also, I just communicated with a woman who is a 33 year survivor of our cancer! She's the longest survivor I've known of so far. I asked her to write her survivor story for my web site/blog. I hope she does!

I also wanted you to check out this youtube video I happened upon almost accidentally: Distinction Between Curing and Healing by Michael Lerner PhD. There is a difference, and while we seek a cure, we need even more to be healed. I loved that he dealt with "mental healing", and that he spoke "the toxic new age idea of keeping a positive attitude when we have cancer". It is more healing to really deal with and experience all of the emotions we have with our diagnosis, negative or otherwise. When I was diagnosed I got very weary of all of the people who told me I needed a "positive mental attitude" to beat it...it's not true!! A cancer diagnosis normally comes with a lot of negative emotions. Dealing with them and expressing them is a normal part of our experience. A part of our healing.

AACR Annual Meeting

2011-04-05T14:02:00.001-05:00

I'm in Orlando, have been here for 5 days for the conference and will leave for home early tomorrow. As always, it's been an amazing experience. I've learned so much and spent time with many great survivors/advocates. I attended many presentations on cancer research. Those with a pedometer found we walk 4-5 miles a day, the conference center is HUGE!

My press conference went well, whew! Before the press conference I was in the press room...have never been in one before! They asked me who my press officer was...I'd never heard of a press officer! I think it was important that I was there, though. The speeches by the other three in our forum were on government spending for health and cancer research, and they kept trying to say it wasn't about money but people and giving hope to people. So when I told my story after they spoke, it helped the press relate to the human element. I only had to tell my survivor story, which I know well. I did do a power point along with that showed pictures of my kids and all of the things I got to be there for...high school prom, first boyfriends, my daughter turning 21 etc. I think that helped.

I got to have dinner last night with an amazing cancer researcher I met at my first conference and whom I have on a very high pedestal, Dr.Danny Welch. He is devoted to research to learn how to make cancer not metastasize. Only about 2% of research dollars go to that cause, which saddens me. 90% of cancer deaths are caused by metastasis. If cancer didn't metastasize, it would be a benign disease. Only a few cancers, like brain cancer, can kill without metastasizing. He discovered a gene which creates a protein that prevents metastasis, which he named Kiss1, as he discovered it in Hershey Pennsylvania. He is creating a drug related to that protein that I hope enters clinical trials soon. I've had so many people say appendix cancer must be an easy cancer to cure, just remove the appendix, which we don't need anyway....but appendix cancer is so lethal not because of the appendix tumor, but because of the metastasis.

I'll write more about the conference and attach photos when I get home!

Press Conference!

2011-03-30T22:48:00.000-05:00

I'm leaving for Orlando this Friday to attend the 102nd annual meeting of the American Association for Cancer Research. I will be a mentor for new advocates this year, something I'd really hoped to be able to do one day, and now I am! I have three new advocates from all over the US and one from New Zealand. I'm hoping to do a really good job! Being at the conference is very overwhelming, especially for first time attendees. 17,000 attend, the convention centers are about six city blocks long and two to three stories high and there are hundreds of scientific presentation. One former participant talked about his "shock and awe" at attending his first conference. I was overwhelmed when I attended my first conference. I'm trying to help my mentees be less overwhelmed.

Then early this week I was asked to be part of a press conference at the meeting. I've never done that! The press conference is in regards to proposed government cuts to the National Institutes for Health, which would decrease funding for cancer research. A former congressman, a cancer research scientist and myself will be at the press conference. They wanted a survivor who had benefited from cancer research...that would be me!! I even have a media coach now! I wrote out my presentation. Please wish me luck! I'll let you know about it when I get back. A few friends say they are sending prayers my way...I'm very grateful for that!

2011-03-27T16:11:00.000-05:00

For anyne interested in participating (I will!) below is information I was sent by Jessye Cohen, a doctoral student, about a survey for a study being done at Virginia Commonwealth University about social support networks after a cancer diagnosis. I have participated in on-line and face-to-face support groups, so am interested in the subject. While I think I prefer face-to-face support, for rare cancers like ours,on-line is sometimes a necessity. They are really needing participants, so hope you will help!

Carolyn

Researchers at Virginia Commonwealth University are conducting a survey of individuals who have been diagnosed with cancer in order to understand use of different social support resources. If you are over age 21 and have been diagnosed with cancer, you are eligible to complete a 30-minute survey about your experiences using web-based and other tools or support groups. Please follow this link for more information and to participate in the survey:

http://tinyurl.com/SupportSurveyVCU Please feel free to contact me at s3jcohen@vcu.edu with any questions or for more information.

Thank you for your time,

Jessye Cohen

__________________________________

Jessye Cohen, M.S.

Adjunct Instructor

Doctoral Student, Counseling Psychology

Virginia Commonwealth University

Update!

2011-03-25T19:22:00.001-05:00

Sorry I have not been posting more...been kind of overwhelmed with school and getting ready for my upcoming trip to Orlando for the 102 Annual Meeting of the American Association for Cancer Research. Since I have more of a leadership role there this time,I'm kind of obsessed with doing it right! I was asked yesterday to participate in a press conference at the meeting and agreed...what an honor! But more I need to prepare for! It will be a forum with myself, a former congressman and a scientist devoted to cancer research participating. The topic will be the proposed government budget cuts to the NIH, which will negatively affect cancer research. Wish me well! I hope I can do a great presentation there and represent all of us who have been diagnosed with cancer. I leave for Orlando in a week, and hope to post from there.

Podcasts: The Human Side of Cancer

2011-03-02T09:46:00.001-06:00

I'm sorry it's been so long since I've posted here! School is keeping me very busy.

I wanted to make all of you aware of a great podcast series being offered by CR Magazine. The podcasts feature Dr. Jimmie Holland, a psychiatrist who works at Memorial Sloan Kettering helping cancer patients deal with the emotional issues surrounding a cancer diagnosis and treatment. She wrote a wonderful book I read shortly after my diagnosis, "The Human Side of Cancer: Living with Hope, Coping with Uncertainty".

The podcasts series is available here: The Human Side of Cancer. I especially liked the second podcast re: cancer myths...and there are many of them (such as we have to have a positive attitude to beat cancer). Two of the podcasts are already available, the rest of the series will be published by Friday. They are well worth your time!

Palliative Care

2011-02-03T14:27:00.000-06:00

I'm so busy! I'm in two graduate programs; one at Loyola University in Chicago (graduate oncology certificate) and another at Purdue University (masters degree as a clinical nurse specialist). One of my Purdue classes is advanced physiology...a very tough course that is heavy into biochemistry and requires about 18 hours of study a week. I love it though, it's made me feel every cell in our body (and we have trillions) are all individual miracles.

Another course I'm taking has to do with conceptual models of nursing. Very abstract, I know why I like science and math now, nothing is abstracts; it is or it isn't, it's right or wrong.

I am taking another course in palliative care...symptom management, hospice care. Death and dying and how to do it well. I like that course a lot. We will all die someday, and I think we need to learn how to do it well. In that class we talk a lot about hospice care. I am such a proponent for hospice. They offer so much. The sad thing is many enter hospice only days before they die. Research says only 10% of us will die suddenly, the rest of long term illnesses, so it's something we should all know more about.

I was also given this information about a new clinical trial funded by the National Cancer Institute. The information I was given is here:

"Adult cancer patients and survivors sought for ONLINE SUPPORT GROUP clinical trial funded by the National Cancer Institute. Researchers in the Behavioral Oncology lab at Loma Linda University (CA) are recruiting participants for a study that hopes to improve the lives of cancer survivors.

“Health-Space.net: Supporting Growth Together” is a 12-week, Internet-based support group. Many individuals have unique issues after completing treatment; they may struggle with physical changes, side effects of treatment, spiritual crises, emotional concerns, social changes and support problems, and/or the stress of recurrence. We are here to help patients and survivors adjust to life’s changes.

For more information and requirements, take a tour of our website:

www.health-space.net, or email: info@health-space.net"

All of us struggle greatly with many of the issues cancer presents us. If this trial were available when I was diagnosed, I would have been eager to participate. I hope many of you will consider joining, it's what we need, a focus on the survivorship issues we all face. It's not easy being a survivor.

Article

2011-01-15T19:53:00.000-06:00

Some cool things about the newspaper article....since it was published I received a card from our superintendent of schools. She loved the "Knowledge is Power" that was in very large bold letters on the newspaper article (but not the on-line version). Knowledge IS power for those of us diagnosed with rare diseases. We so need to educate ourselves...many very good physicians and surgeons may know little about our disease and it's treatment, we so need educate ourselves and become our own advocates.

I also heard from someone who grew up in my neighborhood as a child. I left home at age 17, so I knew her almost 35 years ago!!! She remembered me! I heard from the attorney who helped me found my 501(c)3 non-profit, we've not been in touch for a few years. I heard from a woman I communicated with almost 5 years ago...she had tried for many years to have a child, and on delivery of her first long-awaited child she was discovered to have appendix cancer. My heart so went out to her...can you imagine waiting almost a decade for a child, only to discover you had advanced cancer on the child's delivery? Your best and worst day being the same? She is now a four and a half year survivor, her son is 4 1/2 years old. How cool is that?? And my web site hits have tripled as a result of the article, maybe that will help increase awareness. Cool also that the web site redesign was completed before the article!

I have also been contacted by a woman with appendix cancer who lives in my town, and by another woman who will be attending college with me starting next week. She is going to school to be an RN after losing a loved one to abdominal cancer, she hopes to be a better advocate as an RN.

And thanks to those of you who have signed up to our new facebook site and blog group. We truly need to connect with each other. We can support each other in ways no one else can, however well meaning they may be. Only those who have traveled our road can best understand us. I appreciate all of you who have joined "the group". Way to go!!!

Newspaper Article!!

2011-01-14T09:34:00.000-06:00

I was honored to be interviewed by a large local newspaper, they published the article today, you can read it here Knowledge is Power . It was on the front page of the paper! Hopefully it will help more people become aware of our disease.

Cool thing, after the paper came out I received a call from our Cancer Resource Center. It is affiliated with a research center working with clinical trials, but offers support groups and counseling to those struggling with a cancer diagnosis. Years ago, after my diagnosis, I joined a support group there for a short while. They have now asked if I would be willing to come speak to their patients who are so desperately in need of hope. I'll be thrilled to do that!!

Facebook

2011-01-08T19:49:00.000-06:00

The Appendix Cancer Connection now has a Facebook site. Take a look when you have time! I am going to use the "Discussion" feature, I've already posted a query there: how many of you with appendix cancer were initially misdiagnosed, and how many, when correctly diagnosed, were referred to HIPEC or EPIC specialists?

I've known of several who were misdiagnosed as colon or ovarian cancer...one woman I know was treated for ovarian cancer for almost 5 years before being correctly diagnosed, she has since passed.

On a personal note, I am excited! I have been a part of the American Association for Cancer Research's Scientist-Survivor Program as an advocate since 2008. I was recently asked to be an advocate mentor!! It was a position I'd hoped to apply for a year from now, I didn't know I was eligible for it yet. It was a privilege to be offered the position. I will be a mentor for new advocates in Orlando in April of this year at the AACRs annual meeting.

I remember how overwhelmed I was when I attended my first annual meeting. The convention center was in a city I'd never been to,was about 4 city blocks long and a few stories high. 17,000 people attended and I had to choose what to attend from a book as thick as a phone book of hundreds of lectures offered. I missed attending some things I would have benefited from, got lost a lot and made some poor choices in what I did attend. I was too intimidated to step up to the microphone to ask questions following lectures. I felt I couldn't approach many of the renowned scientists at the meeting (they are very approachable!).

Four conferences later, I do much better! Now I will get to help those who come and are overwhelmed feel less overwhelmed, and will be able to help them make the most of their time there. I never give out my cell phone number, but will give it to those I am mentoring at the conference. I so want them to be able to make the most of the opportunity! And it is a great opportunity!

Website blogs

2010-12-23T15:03:00.001-06:00

My new web site developers are trying to get me more "out there" in the internet....social networking sites etc. The siteis still very much under construction, have patience!

They also offer a blog network attached to my site for appendix cancer patients so that we can more easily communicate with each other. New to me, JCow. I checked it for the heck of it today, and several people have joined our blog network!!! Surprised me, and made me feel great. Those diagnosed with appendix cancer are supporting others diagnosed with appendix cancer via the blog network! We all need that...communicating with others who have been there and done that, walked in our shoes. People who can support us in ways those who don't have our diagnosis can't. I have some who are not candidates for surgery who are looking for others like them who they can communicate with....maybe they can join the blog network? It's a bit like a private facebook community.

Also, for fun, I'm going to paste a link here. I grew up in a traditional church and really didn't like it...the solumness, the formality, the liturgy, the dreary hymns. I quit going to church pretty much when I moved out at 17. Then I discovered the more contemporary churches about 10 years ago...and loved them! I belong to one now that is 1000 members strong, is upbeat (jeans are the normal attire), we have a great band (complete with drums and electric guitars), and informal services. We have 5 Christmas Eve services, one tonight (good for me as we spend Christmas Eve in Illinois with my family). But this video is a rocked out rendition of one of my favorite carols, Drummer Boy, from last year's Christmas Eve service that I LOVED! Maybe some of you will enjoy it?

Just fun stories!

2010-12-21T18:30:00.000-06:00

Ham causes cancer...and so does eggnog!

I bought some eggnog the other day....and my kids protested. We don't DO eggnog anymore! Eggnog kind of signifies my cancer diagnosis to them. Before I was diagnosed,I bought some eggnog. Shortly after I drank a glass I had severe stomach cramps. I had never in my life had a stomach ache or stomach cramps, and decided the eggnog was bad. I asked if anyone else had had any, and grateful that they hadn't, I disposed of it. I had several more episodes of severe abdominal pain after that which in the end led to my cancer diagnosis. But to them, eggnog and cancer are related, even to this day! One of the survivors who wrote a story for my site had the same experience after eating ham, he also misdiagnosed it as food poisoning. I wonder if others have similar stories? At least now I get all of the eggnog to myself!

I was recently interviewed for my newspaper,they are doing a story on my non-profit and appendiceal cancer (Yeah! We need more awareness!). They asked a lot of questions about my cancer. It made me remember how devastated my youngest daughter was with my diagnosis. Sure that cancer was a death sentence, she was afraid I would die. Once she knew I had cancer (she was ten), she went to school and told all of her friends that her mom had cancer. That day she came home ecstatic. I asked her why. She told me of all of her friends who had lost relatives to colon, breast, brain and ovarian cancer. But she said "Mom, no one knew ANYONE who ever died of appendix cancer!!". I decided that maybe there was at least one good thing about having a rare cancer!

If I don't post again before the holiday, I want to wish everyone a VERY Merry Christmas!!

Email

2010-12-18T16:26:00.000-06:00

If anyone has recently sent me an email I did not respond to, please resend! I think I got all of them but may have missed one or two with the host change-over for my web site. They did add a new contact feature to my site so email is sent to me via a form on the site, so hopefully I won't get as much spam! I got tons when my email address was on the site. Filling out the form is the same as sending me an email, just more secure!

CIGNA Covers HIPEC!

2010-12-13T15:05:00.000-06:00

I received an email from Dr.Sardi in regards to the fact that CIGNA insurance no longer considers cytoreduction surgery and HIPEC for PMP (jelly belly) experimental and will pay for the procedure now. It is a victory! They had previously refused to cover the procedure as they deemed it experimental.

I was a bit disappointed, though, that they will only cover it for PMP (mucinous tumors), though CRS/HIPEC are used with good results for several other peritoneal surface malignancies (cancers that have spread into the abdomen), including primary peritoneal, ovarian, gastric and colon cancers. It will not cover appendix cancer tumors that are not mucous producing. Part of why they will not cover these procedures was stated on their site. In referring to other clinical trials, they stated:

" It was noted that patient selection criteria differed between centers and individual trials. Also each treatment center prescribed different chemotherapy regimens and varied in the amount of detail reported."

Again, we need all of the surgeons to be on the same page, to agree on a standardized treatment protocols and to use the same techniques and procedures. Insurance companies want one standard of care to be proven effective in trials before they will provide coverage. That is the purpose of the American Society of Peritoneal Surface Malignancies, to standardize CRS and HIPEC.

For what it's worth, it would probably be a good thing if you are looking for a surgeon to choose one that belongs to this organization, many of the prominent HIPEC surgeons are members. I have the list of members for the ASPSM here. The list is international, I have my own list and I need to edit it to separate US vs. international members, but for now this is the list on the ASPSM site (note though I am not a surgeon, I am listed as a member! And proud of that! :).

Web Site Update

2010-12-05T11:32:00.004-06:00

Loved what my site designer did! At the top of my web site there is now an "Old Site Archive" button, so my old website is still available with unchanged content and all links working until the new site is completed. How cool is that!

Loved his "hard hat and goggles" note too :-)

He is also going to set up Facebook and Twitter accounts for the organization, and also a blogging network on the web site to help patients find and communicate with each other. Pretty neat! I've had several patients who want to connect to others with our diagnosis, so the social networking sites may help with that.

If you have any ideas/suggestions for the website, anything you wish it had or would find helpful, let me know! Now's the time!

Brave New World!

2010-12-04T15:07:00.003-06:00

Well, wish me luck! In a few days I take my first final exam in 17 years! I am in a graduate program at Loyola University in Chicago. I last graduated from college with my second degree in 1993. I am in a graduate Oncology Certificate program (learning about cancer genomics right now). I will continue working on that degree and in January will also start working on a Master's Degree as a Clinical Nurse Specialist. The really good part of that, though, is that I can now look to a future beyond a few years, set goals for a future, plan on being around for awhile- things I couldn't do for a long time after my cancer diagnosis. After my diagnosis and poor outcome predictions, I never planned my life beyond my next CT scan for may years. I couldn't invest in my future. For a long time, I couldn't even say the words "next year". I lived only one day at a time....and in reality that is a very difficult way to live. I don't know if others with a cancer diagnosis share those feeling? Maybe it was just me? I feel very blessed to be over that hump, though. I still know none of us are promised tomorrow, but I am willing to take a chance on tomorrow regardless.

I also hired someone to upgrade the website for my non-profit, the Appendix Cancer Connection,.. So if you look at in now, it's under construction. I built that website with very little knowledge of website design (I purchased used software from Ebay and took an 8 hour beginner class in creating websites through a local high school adult ed class in 2005). I wanted to be able to do more with the site and to make nicer and more user-friendly with more features, but that was beyond me. They are also creating a Facebook page etc. for the organization and helping me with a lot of other things. So, hopefully the site will be fully functional before too long! I'm also hoping to soon develop educational brochures about many of the issues some of us deal with after surgery: TPN, ostomies, PEG tubes etc. that will be available by mail or online. I want to also create brochures about appendix cancer that could be sent to doctor's offices, as I think most are unfamiliar with the disease and it's treatment.

Getting Ready For Surgery

2010-11-30T13:05:00.001-06:00

I've gotten several emails in which patients awaiting cytoreduction surgery and HIPEC have asked me how to best prepare. We are often told, as I was, to expect a 12 hours surgery, to be in ICU for a few days post-op and to be in the hospital for about 2 weeks. We've all heard horror stories of those who have had many complications and who have been hospitalized for up to a month, and who have had very long recovery periods. Much of the length of hospital stay and probability of complications is related to the extent of surgery needed, general health before surgery etc. I had few abdominal tumors, so probably required less surgery than many others. My surgery, expected to be 12 hours, but was instead 5-6. I did not need to go to ICU post-op, and was discharged in 6 days, not two weeks. My recovery was not extended, I was back to doing what I normally did (albeit with some pain) in 2-3 weeks. I also have a very high pain threshold, which also served me well.

There are things we can do though, to speed our recovery and prevent complications. As a nurse, I know that those who don't move post-op have more complications. So I was insistent on getting out of the bed as soon as possible. Within 36 hours of my surgery, I was walking the hospital halls almost all day, every day. Walking helps bowel recover normal function, prevents blood clots, promotes wound healing and prevents pneumonia. When I wasn't walking, I was sitting in a chair in my room, I only went to bed to sleep. I had to walk bent over for awhile at first as standing up straight made my abdominal incision more painful.

I personally didn't like the morphine PCA they gave me at first...one of those things where you press a button to deliver morphine when you are in pain. Morphine made me feel drugged....and nauseated. And nausea and vomiting is a painful thing to do when your abdomen has been cut open. As I was a nurse, I knew of a drug that was not narcotic, Toradol. It is, in essense, a powerful form of IV medication for pain. I asked my morphine be stopped and replaced by periodic Toradol injections Toradol was so much more effective for my pain, and I didn't feel "drugged" or nauseated. I was very lucky I had a physician who catered to my needs and suggestions. Toradol can only be used for a few days, so after Toradol, I took ibuprofen for pain.Narcotics can depress breathing and slow bowel function also,so I felt I was better off without them.

I also brought books and a CD player to the hospital. I needed things to distract me from my status as a patient, to distract me from pain. Some hospitals now have internet access....you can bring your laptop and keep in touch with people if cell phones aren't allowed. Many also use the Caring Bridge site and have a person designated to keep the site up dated, so family and friends can get updates and you or your loved ones aren't inundated with telephone calls while you are in surgery and recovery.

I also brought soft elastic-waisted pants and shirts as I didn't want to wear a hospital gown, so I was in street cloths most of the time. I also bought something called an abdominal binder...it is like a very wide elastic belt you can wear to splint your abdominal incision that was very helpful to me after I was discharged (about $20 at Walgreens). They used to be commonly used for patients with abdominal surgery, not sure why they aren't commonly used now. It may have been sold at Walgreens as an elastic back brace, but it worked well as a binder.

It is also important to take several deep breaths and to cough every couple of hours; if coughing is painful, you can hold a pillow against your abdomen when you do it. If you are in bed, you can do ankle exercises to help blood circulate in your legs to prevent clots from forming.

When I got home, I had no bowel or stomach issues, just didn't have much of an appetite for awhile, so I ate frequent small amounts of high calorie food (egg nog, milk shakes, ice cream sundaes). My appetite did return and I gained back all of the weight I lost with my surgery (about 20 lbs.).

If anyone else has other suggestions as to what helped them through this surgery, feel free to post in the comments here!

An Educational Post

2010-11-14T12:55:00.004-06:00

I hope you all will bear with me here....this is an educational post, but things we all need to know.

Many of us have sought HIPEC (surgery with heated intraperitoneal chemotherapy treatment), only to be told by our local oncologists and surgeons that it is "experimental". Insurance companies deny coverage for the same reason. We currently don't have a universally accepted standard of care for appendix cancer.

In the medical world, "Standard of Care" is paramount. Insurance companies are willing to cover treatments that are "Standard of Care". In some ways, breast and other cancers have it made; there is a "Standard of Care" that is accepted throughout the medical and insurance community, in a sense an agreed upon and accepted "recipe" for treatment of their cancers. Insurance companies and physicians alike recognize the standard of care for other cancers. Every cancer treatment facility recognizes the accepted standard of care and strives to provide that standard care for a particular cancer. If there is an accepted standard of care a facility cannot provide, it is obligated to refer a patient to a place where they can receive the standard of care, or possibly face legal the implications of denying that standard care to their patients.

Much of standard of care is determined by FDA approval. This comes through clinical trials. A Phase I clinical trial uses a new treatment on patients for the first time, not so much to see if is successful in treating the cancer, but to see if the treatment is safe and not harmful. If a treatment passes Phase I clinical trials, it goes to Phase II clinical trials, to determine if it might be an effective cancer treatment for a small population. If it appears it might be successful, it is tested in a larger Phase III clinical trail and compared to the existing standard of care. If the treatment proves to be more successful than the current standard of care in a Phase III clinical trial, the new treatment may be approved by the FDA and become standard of care for that cancer.

For cancers that have spread into the abdomen, there really are no phase III clinical trials to prove the effectiveness of HIPEC. Some insurance companies have refused to pay for HIPEC as they state there are no Phase III clinical trials proving it's effectiveness, though IV chemo alone for abdominal cancers does not seem to offer any curative potential or long-term survival. Not all HIPEC patients survive, but in my own experience with over 1000 appendix cancer patients, I personally know of long term survivors who have had surgery and HIPEC, but none who have survived long-term with chemotherapy alone. But it's just my observation, not proven by a clinical trial.

There is currently a Phase III clinical trial in progress for colon cancer patients whose cancer has spread to the abdomen. Half will receive surgery with HIPEC, half will receive the current standard of care, IV chemo only. Fortunately, those in the IV chemo only arm whose cancers progress will be able to transition to the surgery/HIPEC arm. It will be a victory for us if HIPEC is shown to be superior to chemo only, it may become FDA approved and no longer an "experimental" treatment. It may become standard of care.

Another thing that is against us in seeking a standard of care for surgery and HIPEC is that there are very many small variations in the treatments by the different specialists. It might be a small variation in the temperature of the heated chemo, or the concentration or type of the chemo used, or whether the HIPEC is done via open or closed method...there are several variables. This plays against "Standard of Care". We really need all of the specialists to be on the same page. We need a "recipe" for our cancer. We can't have a "recipe" if everyone is doing it just a bit differently.

If the current Phase III clinical trial proves to be beneficial vs. IV the chemo only arm, that will be in our favor. There will be scientific proof that surgery and HIPEC has better survival rates than IV chemo alone. But we need for all of the HIPEC treatments to be using the same "recipe". We need research to show one HIPEC treatment to be superior to another, we need clinical trials,scientific research, to prove that. We need a universally agreed upon "Standard of Care".

Dr. Esquivel recently founded an organization that seeks to standardize a HIPEC standard of care, the American Society of Peritoneal Surface Malignancies. I was very privileged to asked to be on the board of his new organization and readily accepted. Many of the prominent HIPEC specialists have joined his organization; they are listed on the web site in the Member Directory. The specialists treating our cancer need to all be on the same page. We need unity.

I'm being arrested!

2010-11-01T12:45:00.002-05:00

I got a call today that said a warrant has been issued for my arrest. That got me for a minute!

Turns out I am being arrested for a good cause :-). The call was actually from the Muscular Dystrophy Association. Someone gave them my name as a prominent citizen (didn't think I was?). So I'll be one of those people who are locked up trying to make bail to raise money for the MDA. I'm being picked up at my house on Dec. 1st (a police car?) and transported to jail. I'm told they will take my mug shot, and they promised to feed me while I'm locked up.

I agreed as in the past I took care of a boy with muscular dystrophy, I did private duty at his house. He was a teenager and had been in a wheelchair since the age of 5. When I took care of him he had lost the use of all of the muscles in his body except for his right thumb. He was unable to breath in his own, so was on a ventilator. But he was totally awake and conscious. He was able to control his electric wheelchair with his working thumb. His father also made a button he could press with that thumb that sent pressurized air over his vocal cords since he had a trach. That allowed him to speak (his dad planned to patent the device, don't know if he ever did). He was totally dependent on others for his care.

So it is for a good cause! My daughter doesn't want me to do it....she's afraid she'll have to pay my bail if one else does (she's tight with her money)!

If anyone wants to donate to "bail me out", you can donate here at my MDA website. Be sure to click on the "news" video while you are there....it's kind of fun!

Thanks in advance!
Carolyn

September 11th

2010-10-28T15:39:00.004-05:00

Yikes! I've been promoting several causes lately: SU2C, the Standford Study, Heat It To Beat It. All good things to be sure. SU2C is a grass-roots effort to help all of us to join together to beat cancer, the Stanford study seeks to help us deal with the life-altering changes we experience as survivors, and I am proud of Heat It To Beat it, it's a good chance for us to raise awareness and to collect research funds for our cancer.

But I don't want to only use this blog to promote causes.

We just recently passed the Sept.11th date. That date will always mean so much to me. Have I shared my Sept. 11 story here? Don't know if I have in the past. But here goes....maybe again?

I was treated in NYC for my cancer, I was there often for awhile. I went for an evaluation, then cytoreduction surgery and peritoneal chemo. After my surgery I went back to NYC for follow-up every three months. I had my surgery there in May of 2001. My first follow-up visit (third trip to NYC) was to be late August, early September. I made appointments to be there Sept. 5th.

My oncologist (just one of the doctors I was supposed to see there) called me in late August and asked me to change my Sept. 5th appointment to Sept. 11th. I told her I already had already booked a flight and hotel arrangements, had also made child care arrangements for Sept. 5th. I told her I was supposed to have chemo Sept. 11, so didn't want to change my appointment date. She was a bit flustered with me, but told me okay, just that one time we could have a phone conference vs. an actual appointment since she would be unable to see me Sept. 5th.

I went to Manhattan on Sept. 4th-6th for the rest of my appointments. My husband and I had walked a lot in upper Manhattan my first trip there (highest rent zip code in the US), and Midtown my second trip there (Carnagie Hall, Times Square), so for my Sept. 5th appointment, we decided to explore lower Manhattan, the one area we'd never been. We had a picnic lunch near the Twin Towers. I got a picture of the skyline and the Twin Towers from the Statton Island Ferry.

I developed the pictues on Sept. 10th and showed my kids the Twin Towers on that day. On September 11th, I went to my chemo appointment, and when I got there everyone was in front of the TV. I asked why...they told me of the attack, that the Twin Towers had just collapsed. I saw on the TV people running down a smoke-filled sidewalk...I'd been on that sidewalk just days earlier. I thought of how I'd been near the Twin Towers just days before, probably seen many people returning to work in the Twin Towers, maybe after eating a healthy lunch, maybe a stop at the local health club. I'd felt so vulnerable when I was there and had doubted my cancer would let me live a long life; they'd been healthy and had done everything right and expected many tomorrows. Then the planes hit their buildings. It seemed so ironic. I immediately accepted something I'd heard; none of us are promised tomorrow.

I went to church after Sept. 11th and they did a slide presentation of the Twin Towers attack. I sobbed and sobbed the entire service. I saw the pictures, heard the cries, saw those who decided to jump vs. being burned to death. My heart broke. I'd just been there. I knew all of the sites in the slides. To me it was personal.

I went again to NYC for yet another appointment a few months later. I went to Ground Zero, just a big hole in the ground. The quilts and pictures were still all displayed. The depression in the city was palpable. So many who had assumed long lives had perished. It was hard to wrap my mind around it. My kids hated that I was going back to NYC, and that I used an airline that had been used in the attacks..."but mom, they fly your plane into buildings!".

I always stayed at the same hotel in NYC, so after the fact I asked the hotel staff what Sept. 11 had been like. One said he and his son lived in lower Manhattan. When he learned of the attacks, all public transportation had been suspended. He had a child in grade school in lower Manhattan, so he'd left his job and ran miles through barricades to find his son. It turned out his son had seen the Twin Towers hit by the planes from his grade-school classroom window. His son now slept with him every night, he was afraid, insecure. The depression in NYC that trip was palpable.

September 11th had such an impact on me. What if I had changed my appointment and been there that day? Would I have been at the Twin Towers on their observation deck, maybe? Would I have not been able to come home, though my kids expected me? Would I have run down that same smoke-filled sidewalk? So many healthy and innocent people died. Why did I deserve to survive?

It gave me new incentive. I knew if I survived, I needed to put my survival to good use. I hope I am doing that, and am so grateful for the opportunity.

What Helped and What Didn't?

2010-10-24T22:46:00.004-05:00

If any of you who read my blog have time, I'd love your input! Many people who have friends newly diagnosed with appendix cancer contact me to ask me how to best help. Many have never had a close friend with cancer and have never been cancer patients themselves, so are at a loss.

I try to tell them what was helpful from my experience, but I'd like to know what you thought was helpful also (just leave comments here or email me). Did people do and say things that were helpful to you? Did some inadvertently do the wrong things, even if they were well-meaning?

I'll itemize here what was helpful, and not helpful to me:

I appreciated anyone who helped me with my kids, both watching them and supporting them emotionally. My mother-in-law was my godsend, she watched my kids when I had to leave the state for appointments and for surgery, and was always their "counselor". Teachers at school also paid special attention to my kids and knew to let me know if they were struggling in any way. The worst part of my diagnosis was the effect it had on my husband and kids, so I greatly appreciated anyone who supported them.
I was grateful for offers of help with physical things, but was also glad that everyone respected my right to do all of the things I normally did like cooking, cleaning and shopping; I wanted to do a lot and didn't want to be treated like an invalid after my surgery. People respected that.
I appreciated a donation I received from my church and the many phone cards people gave me; cell phones weren't quite what they are now when I was diagnosed, and everyone wanted to be able to help me communicate with my kids when I was gone.
I appreciated the many cards and notes of support I received. I also appreciated when people gave me books or articles about people who had survived a cancer diagnosis.
I appreciated that my husband was always there for me, loved me unconditionally and was my "rock". He stayed at the hospital as long as there were visiting hours, but didn't stay the night (that would have made me feel badly). He played cards with me and walked the halls with me and wouldn't eat in my presence if I couldn't eat while I was in the hospital. He let me do as much for myself as I could. He always let me know he could take me to chemo if I wanted him to, but also respected me when I wanted to transport myself. He never treated me like an invalid or "sick" person, but he went with me to all of my doctor's appointments. He helped me access my lab and CT results within 24 hours of my tests so I wouldn't have to wait for my doctor appointments to learn the results.
I got very frustrated with those who felt I always had to "think positive" to survive. My life was a mess after I was diagnosed. Sometimes I felt depressed, afraid and angry, and I wanted to be able to voice that. I didn't always feel positive but felt I always had to put on a positive front as so many insisted I wouldn't survive if I didn't "stay positive". It always occurred to me that if I had a broken leg or pneumonia, no one would have told me I had to have a positive attitude to get better....they would have told me to go to physical therapy, eat well, rest, drink lots of fluids etc. They would have understood if I was sad or in pain or depressed with being ill. My best friend helped me the most, I didn't have to put on a positive front with her, I could always express how I really felt when we talked.
I'm not sure why, but many told me when I was first diagnosed about all the people they had known with cancer who had lost their battles. I was puzzled at why they felt they had to tell me that? It happened multiple times.

That's all I can think of right now, but I know many of you had people who supported you, and maybe some who inadvertently did things that were not helpful. If you share them here, I think many who ask these questions will appreciate your input. Thank you in advance!

Cancer Disparities

2010-10-12T10:30:00.004-05:00

I learned a lot at the AACR Cancer Disparities Conference I attended in Miami. With all socioeconomic factors being the same, cancers are different in some ethnic groups. Black women are more likely to be diagnosed with breast cancer at an earlier age, and are more likely to have the triple negative pathology, which has a worse outcome. Hispanic children with an American Indian ancestry are less likely to respond to treatment for one of the leukemias. All things are not equal.

Much about genomics was presented (which was great as I am involved in graduate genomic education!). A person can be genetically tested for ancestry, and many who identify themselves with a specific ethnic group are found genetically to have very mixed ancestry; for example the genetic ancestry for those who claim to be African American is very different for those in the US compared to those in Europe.

What was really interesting to me was that researchers said in the future cancer won't be seen as organ specific (breast, colon, pancreas) but will be identified by its genetic makeup. Two people with different cancers can have the same genetic mutation causing their cancer, so chemotherapy for a lung cancer might work well on someone with breast cancer or melanoma who has the same genetic mutation. All cancers are genetic....only 5-10% of cancers result from the genes we inherit from our parents, the rest result from mutations in genes we acquire as we live. Mutated genes can produce proteins that cause cells to become cancerous. Now that specific mutated genes are being identified, "targeted" therapies are being developed. A physician showed us an x-ray of a patient with lung cancer; there were many lung tumors visible. That patient had a rare mutation that responds well to a particular chemotherapy that is taken in pill form. He showed us an x-ray taken after the patient had taken one pill a day for a week....the tumors were gone. That is an example of a targeted therapy. Not all lung cancer patients will respond to that drug, only those with that specific mutation. Using genomics, they are beginning to be able to identify which drugs will work on which cancers and which patients will or won't respond to therapy. Some appendix cancer patients are now being tested for the KRAS mutation. If your cancer has this mutation, the drug Erbitux will have no effect on the cancer. It is a very expensive drug, so identifying this mutation saves the patient the cost and side effects of what would be a useless therapy.

There was also a lot of presented about clinical trials. There are so many new cancer treatments and targeted therapies that need to be tested so that they can be approved by the FDA for use, but very few cancer patients participate in clinical trials. I hope to learn more about clinical trials and to present the information here.

Leaving again!

2010-09-27T22:52:00.001-05:00

I will be leaving again in a few days for a trip to Miami to attend the American Association for Cancer Research's Cancer Disparities Conference. I will attend as part of the Scientist-Survivor Program. I was very grateful for the invitation. I'm sure I will learn a lot.

As I travel more as a cancer advocate, I've taken to extending travels one day for my own site-seeing/discovery purposes. I never traveled in my younger years, so enjoy seeing different parts of the country now. For fun I try to eat the local food wherever I go. In Florida last time, I tried alligator (tastes like chicken but with the texture of shrimp). I tried skate wings in San Diego and LOVED them; skate wings are the "wings" of a creature similar to a mantaray. In Maryland I tried a soft-shelled blue crab (you eat the shell!) and a crab cake sandwich, which they are famous for. I struggled with trying a crab cake sandwich, as a "cake" sandwich kind of sounds like bread on bread? I tried a crab cake in Chicago once, and it was like a muffin with crab meat chunks in it. But, last minute, just an hour before I left Maryland, I tried one. There is no "cake" in Maryland crab cakes, just crab. The crab cake sandwich was the best sandwich I've ever eaten! I also tried shark nuggets in Maryland, kind of like fish with the texture of chicken, just the opposite of alligator. Last year on vacation, my husband and I tried snails...they were great too (they were disguised so they didn't look like snails). Food can be fun!

One thing I've noticed since surviving cancer, I'm less intimidated or afraid of the unknown. I love to fly now (beats road trips like the 1600 mile backpacking trip I recently went on). I used to be afraid to fly...no "fender benders" in the sky. I don't worry about plane crashes anymore. Maybe I finally got it that I can't always be in control?

Kind of interesting, since I travel more, I actually have enough frequent flyer miles for one free flight. I think I will use them for next year's "Heat it to Beat It" in Maryland....and I will for sure have another crab cake sandwich when I'm there! Blue crab was good, but the crab cake sandwiches are better, even better than shark! And I will stay at the same hotel that offers unlimited free milk. I drink several glasses of milk a day and when I travel I go into milk withdrawal. I loved being in a hotel that had unlimited free milk 24/7!

I am so grateful now, as a nine year cancer-free survivor that I don't have the life I had "before cancer", but I can look into the future and make plans again. Not for the distant future, but I can again say the words "next year", which I couldn't for a long time after my diagnosis. My "next year" plans are still tentative, as I no longer assume tomorrow, but I am more comfortable in looking towards the future. I know I am blessed in that sense....for years I only lived my life between 6 month CT scans. I am finally past that now. I don't take tomorrow for granted, but I can now at least contemplate a tomorrow.

Heat it to Beat It Update!

2010-09-21T23:18:00.004-05:00

I read on the Heat it to Beat It web site that the event was even more successful than first thought! It turned out 500 attended (250 were initially expected), and while the goal was (I thought) to raise $50,000 for research, $90,000 was raised. How great is that!

One of Dr. Sardi's and Heat it to Beat It's goals was to raise awareness for cytoreduction surgery and HIPEC (heated intraperitoneal chemotherapy) as a proven treatment to prolong life and to potentially cure those diagnosed with cancers that have spread into the abdomen from several different primary sources including the appendix, the ovaries, colon, rectum, peritoneum and stomach. For many years, these cancers, once spread into the abdomen, have been considered terminal and untreatable, with IV chemo only used to prolong life for awhile. When I first became a nurse, before CT, PET and MRI scans, patients had "exploratory laparotomies", abdominal surgeries to look inside their abdomens to find the problem. When cancer was found, they were closed up, and referred to hospice when they were finally awake. There was no attempt to treat their disease. It was terminal.

Dr. Sardi has several long-term survivors of 10 years, 16 years etc. I met a woman on the walk who was diagnosed with advanced primary peritoneal cancer 2 1/2 years ago who is now cancer free and healthy after being treated with cytoreduction surgery and HIPEC. Her sister died of the same cancer just before she was diagnosed; she did not receive these treatments. Most of those with advanced primary peritoneal cancer survive only 3-6 months without treatment.

The sad thing is, I communicate still with many who after diagnosis are told they have no treatment options and only six months to a year to live. My goal is to convince them to self-refer to a HIPEC specialist. I know they love and trust their local doctors, but their local doctors just don't know. Much of the medical community is unaware of this treatment. Some in the medical community are vaguely aware of the procedure, but don't know much about it and think it's experimental. Many insurance companies don't see it as a "standard of care" treatment so refuse to cover it.

We all (myself included) need to be more vocal. If we have the procedure done and are doing well, we need to go back to those in the medical community who told us we were untreatable and show them that thanks to this treatment, we have survived. When we see our GPs or other doctors, we need to tell them about our procedure and survival. We need to spread the word!

My dream is that one day this will be seen as "standard of care" for our cancers. Insurance companies cover treatments that are "standard of care" for an illness. Many other cancers, like breast cancers, have a "standard of care", in a sense a recipe for treatment that is accepted by all in the medical community. If a hospital or doctor was unable to provide the accepted "standard of care" for a breast cancer patient, he or she would be obligated to send the patient to someone who was able to provide the standard of care or be legally liable for denying that care to their patient.

One cool thing, I have a stat counter on my home web site. I can see who has viewed it. I haven't checked in a really long time, but decided to look at it today. Ten medical facilities and several insurance companies viewed my www.appendix-cancer.com website just today, along with several universities. My web site is all about cytoreduction surgery and HIPEC treatments for our cancers. Maybe, just maybe, one health care facility decided to refer a patient to a HIPEC specialist. Maybe, just maybe, one insurer covered the procedure for a patient. I hope so.

But I need to "put my money where my mouth is". A surgical oncologist at large university hospital renowned for cancer treatment told me I was untreatable and terminal 9 years ago. I self-referred to a specialist and am alive 9 years later. I need to talk to him, to tell him that yes; there was treatment for me after all. That no, I didn't die, I lived to raise my kids to adulthood in spite of his predictions. There was something out there for me he didn't know about, and if he has other patients like myself, he needs to refer them to a specialist.

We all need to work towards that goal, for all who will follow us. We need to create our own grass roots movement, to make it easier for those who will travel our path.

Heat it to Beat It!

2010-09-19T21:47:00.001-05:00

Beginning of the walk

I participated in Heat it to Beat It today, and I thought it was phenomenal! Initially I was told 250 were expected to participate, then 300....I think over 400 showed up! For a first time event, I was SO impressed. They had a DJ, warm up dancing before the walk, lots of refreshments, a beautiful walk along the Inner Harbor and lots offered after (chair massages, acupuncture etc.). Part of the focus of the walk was to raise awareness for the newer treatments for peritoneal surface malignancies; cancers from multiple sources (appendix, colon, ovarian etc.) that spread into the abdomen that were and are still sometimes considered "terminal" on diagnosis by much of the medical community. I was one who was considered terminal on diagnosis by a renowned university hospital in a major city, a hospital known for it's great cancer care...but I am a nine year survivor. I am a survivor only because I did my research and self-referred to a specialist 750 miles from my home. Many patients who receive cytoreduction surgery and intraperitoneal chemotherapy survive for many years....but much of the medical community is unfamiliar with this treatment. Insurance companies unfamiliar with the treatment don't want to cover it. We need to change that. I get emotional every time I think that I got to raise my kids to adulthood after initially being told I would abandon them while they were still in grade school.

I loved getting to meet Dr. Sardi. I truly admire him as he is willing to take on even those of us with massive disease and high grade tumors, the "tough" cases...not everyone, not even all specialists, will. I am a nurse so also understand that the HIPEC specialists could have much easier lives and make much more money doing other "simpler" surgeries. The long surgeries (some HIPEC specialist have spent up to 22 hours in surgery for a single case) makes me know they do it for reasons other than the money...there are much easier ways for them to make more money. They care. They want to help us.

Here are some pictures from the walk (hope I do this right, I'm not used to adding photos to my posts...bear with me!

Dr. Sardi

A Team

In Memory Of

Dancing "warm up" for the walk

I understand that this is the first of many future "Heat it to Beat It" walks, and in light of my experience here today, I think I may possibly commute to Maryland annually!

Baltimore!

2010-09-18T14:32:00.000-05:00

I am in Baltimore, Maryland right now for tomorrow's "Heat it to Beat It" walk, a walk to raise research funds and to raise awareness for the use of heated intraperitoneal chemotherapy. It is sponsored by Mercy Hospital and many patients and families of Dr. Armando Sardi. I will finally get to meet Dr. Sardi tonight! I hope to meet patients I've communicated with since their diagnosis at the walk also.

I travel more as I've gotten more involved in cancer advocacy and involved a bit in the political arena. In the past couple of years I've been to DC twice, San Diego, and now Maryland. I will be in Miami in about a week for another conference. I usually add a day to the trip to do site-seeing on my own, today was my Baltimore sight-seeing day. My daughter teases me that I christen a new city by getting lost in it, which I usually do (I have a very poor sense of direction). I get lost walking (I do always eventually find my way back after a few miles of walking), but I'm really good at public transportation. I've done the trains and subways in NYC, Chicago, DC and now Maryland with no mistakes so far! I love public transportation in major cities. Baltimore has a great light rail system, and for $3.50, you can get an all day pass to ride the train and buses anywhere. Fun thing is they don't check (unlike Chicago) to see if you purchased a ticket. It's kind of on the honor system, but they do do spot checks for tickets, and if you are found riding without one, you are fined $500. So most seem to buy the tickets for insurance against the fine. Another great thing here is that my hotel gives free complementary transportation to and from the nearest two train stops, so you can really go anywhere without a car.

Sculpture over the
Harbor

The Science Museum

I spent most of the day in the Inner Harbor. I'll insert come pictures I took here! The center of Baltimore is a large harbor with access to the Atlantic Ocean. The area has museums (see right), lots of restaurants and shops, also boat tours of the harbor. I took one of the boat tours, which was pretty inexpensive and nice. Above is a picture of a sculpture over the harbor.

Ritz Carlton Condos on the Harbor

Will be back hopefully tomorrow with pictures from the walk!

Something great!

2010-09-13T19:13:00.003-05:00

I recieved an email today from Stanford University's Patient Education Research Center. They are conducting an on-line workshop.

The writer told me:

"Our organization is currently running an online workshop for people who have survived cancer multiple times, with the goal of providing support to cancer survivors and helping them get back into living again. This study was run before for one-time cancer survivors with great success, which is why we're running the same study for people who have survived cancer two or more times."

Sounds great to me! We all need help to "get back to living again". If you are dealing with a recurrence of your cancer, or if you have previously had another primary cancer (I know a few appendiceal cancer patients who have had prior cancers, breast etc.), are over the age of 19 and are not actively receiving surgery, chemo or radiation, you are a candidate for the program.

You can find out more about this program and how to apply to participate at this web site: What is the Cancer: Thriving and Surviving Workshop and Study?

I've pasted some information from their website below, but go to the site to see the rest!:

What is the Cancer: Thriving and Surviving Workshop and Study?

•An online workshop and study designed for cancer survivors and led by cancer survivors.
•A community to share your problems, hopes, fears and inspirations with other like minded people
•Easy to follow, interactive online sessions are posted each week for six weeks. You can log on any time that works for you and it only takes about 2-3 hours each week.

Benefits of joining

•Learn to manage your fears and stress
•Learn ways to manage fatigue, pain, and the effects of treatment
•Set goals and work toward them
•Find better ways to talk to your friends and family about your health
•Get support and share your experiences with others who have survived cancer
•Sign up today, and discover, simple, practical steps you can take to get the most out of life.

Who may participate?

•Adults (19 and over) who have been diagnosed with a second or reoccurring cancer within the last 5 years
•Are not currently receiving intensive cancer treatment (surgery, radiation and/or chemotherapy)
•People on hormonal therapy or long-term maintenance medication can participate
•Have access to the internet (high-speed recommended) and an email account
•Living in the United States

What alumni are saying

•"Feedback, support and advice from someone in the same boat was encouraging. The group was uplifting and inspirational"
•"Knowing I am not alone with my fears and problems "
•"A good reminder of things to do, a guide on how to do things if needed (exercise, goals, etc.)"

Don't forget, and for Facebook users, hit "Like"!

2010-09-09T21:54:00.000-05:00

Don't forget to watch Stand Up To Cancer tomorrow, it's on all of the network channels and several cable channels at 8PM (7PM Central time).

Also, I received this email today, and you can get $1 donated to Stand Up To Cancer by hitting a "Like" button on this facebook page; these are the details I was sent today:

I’m Rachel from Gilt Groupe Home and Children. Gilt Groupe is known for offering designer products at reasonable prices, making a name for ourselves by making you look your best for less. But now, we also want to make you feel good: we're donating $1.00 to Stand Up To Cancer (http://SU2C.org/) for each new "like" on the Gilt Home Facebook page.

Our donation goal is $25,000 and we hope to reach it by Monday at 11:59 pm. EST. There are a couple ways you can help Gilt Groupe reach our donation goal:

“Like” the Gilt Home Facebook page and in return we’ll donate $1.00 to Stand Up To Cancer - Encourage your friends to “like” Gilt Home by clicking the “Suggest to Friends” link under the Gilt Home picture

What questions to ask when you are newly diagnosed?

2010-09-06T23:45:00.001-05:00

I am writing this in response to a comment to my last post. I think all of us new to a cancer diagnosis struggle with what questions we need to ask the physicians we see. I did a lot of research prior to my first appointment with a specialist as I wanted to be able to ask intelligent questions.

I have some questions to ask listed on my FAQ page, they are as follows:

How many cases of appendix cancer (or peritoneal cancer) have you treated? (I personally wanted a specialist who had treated at least 50-100 cases of my rare cancer)

What treatments do you use?

What are your survival rates?

What are your complications rates?

How aggressive is my particular tumor?

What treatments do you think I will need?

How long do you expect my recovery from treatment to take?

What is the recurrence rate after treatment?

Another good list of questions is posted on this Making Sure Your Surgery is Safe site, published by the US Department of Health and Human Services.

My local very good surgeon, on discovering my cancer, also said that I needed a hemicolectomy ASAP. I personally chose not to have any further surgical procedures done at the time (my appendix had been removed laparoscopically), as I had thought I might need more than just a hemicolectomy, and wanted to have any surgery I needed done all at once. Because my appendix had ruptured, I knew I had seeded my abdomen with cancer cells, and based on my research, I felt I also needed peritoneal chemotherapy. Peritoneal chemotherapy is less effective when you have had previous abdominal surgeries (due to scar tissue and adhesions that form preventing distribution of the peritoneal chemotherapy...scar tissue and adhesions develop in about 5 days after major abdominal surgery).

In the end, I waited 6 weeks to have surgery done by a specialist who had treated many cases of appendix cancer (my surgery was more involved than just a hemicolectomy, I had the hemicolectomy done as part of my cytoreduction surgery). I had peritoneal chemotherapy initiated almost immediately after surgery (before scar tissue and adhesions had formed), and had not other abdominal surgeries aside from the laparoscopic appendectomy prior to my cytoreduction surgery. All of those things I think went in my favor, I have been cancer-free for 9 years.

While we all want the cancer removed from us as soon as we are diagnosed, sometimes it is worth the wait to seek out the correct treatment, to see a specialist. I have many of the specialists listed on my "Physicians and Facilities" page.

Hope that helps!

Cancer Genomics

2010-09-02T19:53:00.004-05:00

I am back in school! I am working on a graduate Oncology Certificate through Loyola University in Chicago. I love going to school, and I love learning, so I'm excited!

I am only taking one class right now, Cancer Genomics. Not many oncology certificate programs offer classes in cancer genomics, it's one of the reasons I decided to pursue the program at Loyola. I've been exposed to much research in cancer genomics attending AACR research conferences, so have a little bit of knowledge. I know cancer genomics will change the future of cancer care.

Cancer genomics is about the genetics of cancer. Cancer is a genetic disease; it is caused by altered genes. Genes that normally control and limit the growth of cells goes awry. Only a small percentage of cancers are caused by genes inherited from our parents, only 5-10% of cancers are inherited. Most cancers are caused by genetic defects/changes that occur over our lifetimes. Recent studies have found that cancers do not arise from a single defective gene, but from a group, or series of genetic defects.

It was also discovered that even in people with the same cancer, say colon or ovarian cancer, the genetic defects in the tumors from two patients with the same cancer can be very different. So even two of us with signet ring appendix cancer may have very different tumors that respond differently to treatment. This may explain why chemotherapy for one patient’s colon cancer is not effective on another patient's colon cancer (or appendix or ovarian cancer).

That may sound like bad news, but it may in fact be good news. A new field is rising from cancer genomics, pharmacogenetics. It is possible that all of our individual tumors will be genetically analyzed in the future. It's possible that based on the genetic findings of our tumors, they will be able to determine which chemotherapy will be most effective for a particular patient's cancer. That means no one would have to suffer the side effects and expense of going through a chemotherapy regime that would not benefit them.

At the presentation, they said it will one day also be possible based on a patient's genetics to determine who will have severe reactions and side effects to a particular chemo, so that they can avoid using the particular chemotherapy for that patient.

It was interesting; one of the presentations I attended spoke of a particular chemotherapy in a clinical trial. The chemotherapy only helped 10% of the patients in the trial, so the drug was not approved by the FDA. The interesting thing was that the 10% who did respond had an overwhelmingly positive response, many went into remission. It could be that particular 10% had common genetic defects, and that the particular chemo was effective for that group. It could be in the future that treatments are tailor made for the genetics of our particular tumor.

Will let you know more when I know more...but it's a brave new world in cancer care!

Thinking.....

2010-09-01T01:39:00.001-05:00

I've been working a lot of hours at my new job...it's been interesting. For me it is an entirely new nursing venue, nothing like what I've ever done before. My best friend wanted me to try it. I'm working at an in-patient locked psychiatric unit for kids ages 5-17. I've never done psychiatric OR pediatric nursing. This job will let me choose my hours, as I will hopefully be in two graduate programs simultaneously and often attend various conferences. I need the flexibility. They've told me they like and appreciate me there, but realize they are just a "pit stop" in my career, as they know my career goal is to work in oncology.

What intrigued me to work in psychiatric nursing was how much I know of how a cancer diagnosis disrupts our mind, our thinking, and our emotions. For me recovering from the extensive surgery (MOAS, Mother Of All Surgeries) and chemo was a breeze compared to living with the fear of recurrence, the sense of uncertainty, the anxiety, the depression sometimes.

Most of the kids I now take care of have had horrible lives. They grew up in homes where there was alcohol and drug abuse, very many have been sexually abused; they have been traumatized from a very young age. Most have also been physically and emotionally abused. Many suffer from PTSD (post-traumatic stress disorder) related to incidences in their lives. One teen I take care of was sold to child molesters at a young age for drug money for her parents. One lived with her grandmother because she had been removed from the home of her drug abusing mother, but was allowed to visit her mother. One of her mother’s friends raped her at age 7 when she was visiting.

All of the stories are sad. Many of the kids will never recover...if they make progress at our facility many will be discharged back to the dysfunctional homes they came from. Some go on to live their remaining lives in state psychiatric hospitals. They have been forever changed. It's heartbreaking.

But it makes me think of how traumatic events in our lives forever changes how we think, how we feel, how we live and process information, even as adults. Many of my kids mistrust the future, as do we after a cancer diagnosis. Many kids suffer PTSD as a result of trauma in their lives...it is now being recognized that cancer patients do as well. Many have had their lives threatened, we have too. At least we have the benefit of having grown up in a hopefully healthy environment before diagnosis, so we have some resources we've developed over our lives to help us come to workable solutions. We are also for the most part adults and independent so can pursue resources to help ourselves, like counseling and antidepressants if we feel we need to.

But in the end, it's made me so aware of how negative experiences affect us all in so many ways. We can still pull some positive things out of our cancer experience (though I continue to feel cancer is not a "gift"). My hope is that some of these kids can recover and make positive use out of their experiences...maybe one day help other abused kids as they will understand. Just like those of us who have been through the cancer experience support and understand each other. We need someone else who's "been there and done that".

How Cool is That!!!!

2010-08-26T18:01:00.003-05:00

I'm really not great at fundraising...I need to get over that as I have a non-profit now that I need to learn to raise funds for. Most of my life I have volunteered my time...working soup kitchens, delivering meals to the homebound and handicapped, providing musical entertainment to the lonely. When I get calls asking me to donate money, I always say "I donate my time but not my money, do you need my time?". Those calls usually end quickly.

But anyway, I went ahead and created a donation page under the name of my non-profit to raise funds for the Heat if To Beat It walk I will attend in Maryland in September. It's a walk to help raise awareness and research funds for our cancers. I never checked the page as I expected no response, but figured I would donate to my own Heat It to Beat it site (at least $100 as those who raise $100 get a T-shirt to commemorate the event. I'd like the T-shirt since I'll be traveling out there from Chicago and am kind of sentimental about the event. I really want the T-Shirt!).

For the heck of it I checked my "Heat it to Beat it" site, and Oh My Gosh!!, I have two donations totalling $250!!!! I was blown away!!! And those who donated left comments that made me feel SO good! "Thanks for all of your work on the website. It has helped my family greatly." and "2 year survivor signet ring appendix cancer. Go Carolyn!". Thank you so much Ginger and Emery!! I hope you read my blog so you know how grateful I am! I never expected anyone to donate to that site.

I'm working 40 hours this week, but in the nursing world, if your relief doesn't show up for the next shift, you are "mandated", you have to stay another shift or risk losing your license and job for "patient abandonment" if you go home when you were supposed to. All bets are on that I will be "mandated" this weekend, as the nurse following my Saturday shift calls off more than she shows up for work. So I've decided if I am mandated for that extra shift, I will donate the money I earn on that shift to my "Heat it to Beat It" page.

Maybe I'll donate a shift even if I don't get mandated, because now I'm inspired!

Thanks again!

Scientist-Survivor Program

2010-08-21T19:48:00.001-05:00

I have been involved with AACR's the Scientist-Survivor Program since 2008.
It is a marvelous program. Fun story of how I got involved there, a woman found my appendix cancer web site and emailed me. She was a renal cancer survivor of many years (not sure how she came upon my site?). She loved what I was doing and we developed a friendship. She was an advocate for renal cancer patients and cancer patients in general in our state government (turns out she only lived 30 miles away from me!). She had become involved in the Scientist-Survivor Program and was determined that I become involved too. She encouraged me to apply to the program, said I HAD to be a part of it. I needed a recommendation letter as part of my application, which she wrote for me.

I was accepted into the program and attended my first AACR annual meeting in 2008. I was blown away. The conference was huge, with 17,000 cancer researchers, oncologists, nurses and survivors attending. There were hundreds of presentations offered from scientists revealing cutting edge cancer research findings. I learned so much...and I love to learn.

The Scientist-Survivor Program accepts about 30 of us a year to attend the annual meetings. All of us are cancer survivors who have become advocates. As part of the program we all get to spend time together and learn from each other. It's an amazing group, I was so inspired by many cancer advocates. We learn so much at the annual meetings. We are able to share what we learn with others in the cancer community when we return. We are also treated very well. We have a Scientist-Survivor meeting room at conferences where we can all go to have meals together, there are special presentations for those in our program, we get to meet personally with some of the cancer research scientists (that's how I met one of the founders of Stand Up to Cancer).

The Scientist-Survivor Program was the brainchild of Anna Barker (see her here in a news interview), the Deputy Director of the National Cancer Institute. Via the program I have met and spent time with her...and I've come to idolize her. She is brilliant, passionate and caring. She lost all of her family to cancer and has made it her life's mission to see cancer defeated. She is now one of my heros (and I don't have many!)

I've copied the goals of the Scientist-Survivor Program from their web site below. I so encourage any survivor advocates to apply to this program, it is life-changing!

Goals of the AACR Scientist↔Survivor Program

Broaden survivor and patient advocates’ understanding of fundamental topics in cancer research and expose them to the cutting-edge science that is accelerating our progress against cancer today.

Develop an informed constituency of survivor and patient advocates who work in the larger cancer community.

Increase awareness on the part of scientists and survivor and patient advocates of the many ways in which they can collaborate to support, influence and strengthen cancer research.

Develop synergistic collaborations among scientists and advocates to increase funding of cancer research, increase participation in clinical trials, improve the design of clinical trials, increase the number of effective cancer drugs, and facilitate access to cancer information for the general public, high-risk individuals, and minority and underserved populations.

Provide laboratory and clinical scientists with the opportunity to gain a more personal understanding of the enormous impact of cancer on patients and their loved ones.

Expose scientists to the key concerns of survivor and patient advocates, which include survivorship, quality of life, science and public policy, and other important issues.

Disseminate the knowledge and new perspectives acquired through the program to a vast and diverse audience.

Create mutually beneficial and enduring partnerships among advocates and researchers.

Stand Up to Cancer!

2010-08-20T08:45:00.001-05:00

On September 10th, Stand Up to Cancer will again host a multi-network television research fundraiser. Fun thing, I was able to meet in person one of the founders of Stand Up to Cancer in 2008. He is a brilliant cancer researcher and scientist I greatly admire and personally like a lot. He is truly dedicated to finding a cure for cancer and is very inspirational. He has passion that is contagious.

Stand Up to Cancer strives to raise funds for innovative cancer research.

Seventy percent of the funds collected go to fund cancer research "Dream Teams", bringing the best research minds together to look for cancer cures. Dream Teams seek to bring some of the best scientists working together in looking for answers, combining their knowledge and resources vs. working independently in their own corners of the world.

Twenty percent of the funds raised are used to fund research that is "out of the box" and would not likely otherwise be funded by anyone.

Ten percent of the funds are used to maintain Stand Up to Cancer.

I kind of think the answer to cancer will be something "out of the box" in the end.

The telethon will air on E!, The Style Network, G4, ABC, NBC, CBS, FOX, HBO, Bio, Discovery Health, HBO Latino, MLB Network, mun2, Showtime, Smithsonian Channel, TV One and VH1 simultaneously at 8pm (7pm Central time) on September 10th.

I think just the three major networks aired it simultaneously last time. Maybe one day it will be on every TV channel simultaneously, the only thing to watch!

When the 2008 telethon aired, at one point so many donations rolled in at once that the software or whatever crashed for a bit, so some funds were lost. I don't think they expected that big a response. I'm sure this time they will be prepared for it.

Cancer has affected ALL of our lives; even those who have never been diagnosed have had someone in their life struggling with or losing a battle with cancer. We all want to see cancer defeated. It's a cause we can all be united for. Maybe Stand Up to Cancer will be the force that unites us and helps us work together to forever be rid of cancer?

Offending web site is down!

2010-08-16T12:12:00.001-05:00

I just received an email from the legal department of web host of the Mesothelioma site as I reported them for copyright violation. It said: "We have contacted the owner and have requested the violation be removed, or we have removed the offending website. If you ever come across sites that are violating our Policies, please feel free to contact us again."

I just checked the site...Mesothelia Treatment Options . It is down!!!! At least temporarily (until they remove plagiarized posts).

Yeah!!!

This is kinda fun now.....

2010-08-15T14:23:00.002-05:00

Well, the post I did identifying the Mesothelioma Treatment Options site as plagiarizing my posts was also siphoned and is now on their site, so now they have a post advertising their own plagiarism!!! This is kind of fun! See it here:
Mesothelioma Treatment Options.

It's obvious they plagiarized that one too as it's posted on my blog the 14th and on their blog the 15th.

I was able to easily locate their web host, and I filed an abuse complaint against the Mesothelioma Treatment Options web site...we'll see where that goes!

Even more interesting.....

2010-08-14T20:11:00.003-05:00

Alice did a search of the site "Mesothelioma Treatment Options
The Most Comprehensive Mesothelioma Online Site". It turns out they've plagiarized at least 5 of my posts from the Appendix Cancer Survivors blog. Alice found them just with a quick search, there are probably more:

http://tumormesothelioma.com/the-cancer-community.html
http://tumormesothelioma.com/more-help.html
http://tumormesothelioma.com/after-cancer.html
http://tumormesothelioma.com/advocating-for-yourself.html
and now my most recent post: http://tumormesothelioma.com/interesting.html

They are also plagiarizing other sites.

The comments to their posts that Alice and I submitted were never published.

Makes me sad that their are people in the cancer support community that are willing to use other patients and survivors....

Let's see if THIS gets siphoned! :-)

Interesting.....

2010-08-13T16:12:00.003-05:00

I was googling Heat it to Beat It, to find their home page, as I was hoping it was high up on the Google ranking, and I turned up this website...they had copied and pasted my own Heat it to Beat It August 11 post from my blog (after they removed the link to my personal fundraising page) and claimed it was written by "Mesothalioma Treatment Options". Kind of strange! I wouldn't have minded if they had linked to my blog or stated me as their source, as I want the event to get a lot of attention. But....

See it here on the Mesothelioma web site, the site that is plagerizing my posts from the Appendix Cancer Survivors Blog.

I today added to my site "If you use my posts/content, please link to my site or credit the source" along with a notice that I am now protected by "Copyscape", so do not copy my content.

I don't think I'm such a great writer, but I still want to own what I write, I guess? It come from my, and only my heart. Not someone else's.

Heat It To Beat It!

2010-08-11T08:56:00.007-05:00

I just made plane and hotel reservation to travel from Chicago to Baltimore so that I can be part of the "Heat it To Beat It" walk September 19th to raise research funds and to increase awareness for those of us diagnosed with peritoneal surface malignancies.

Peritoneal surface malignancies are cancers that deposit tumors onto the lining of the abdomen. The abdomen and abdominal organs are covered by a thin membrane, like Saran wrap. The membrane is medically named the peritoneal membrane. Our cancers are "peritoneal surface malignancies". These peritoneal membranes are the surfaces where cancerous tumors from the appendix form, also other cancers like ovarian cancers, some colon cancers, mesothelioma and primary peritoneal cancer (in primary peritoneal cancer and mesothelioma, the "Saran wrap" lining itself becomes cancerous).

All of these cancers are candidates for the same therapy, cytoreduction surgery (surgical removal of all tumors) and HIPEC, heated chemotherapy infused directly into the abdomen to kill microscopic cancer cells after surgery to help prevent recurrence of our cancers.

Many great surgeons and oncologists are unfamiliar with this treatment for our cancers, so we truly need to help both civilians and medical personnel become familiar with this treatment. These treatments are effective. Peritoneal chemotherapy (abdominal chemotherapy) offers benefits over IV chemotherapy for our cancers. We need to promote awareness, and we also need to raise funds for research. "Heat it to Beat" it strives to do both.

Dr. Sardi is a renowned specialist in these procedures. I have communicated with many of his appendiceal cancer patients. Over the past several years Dr. Sardi and I have also communicated via phone and email. Though we have never met, we truly respect each other. I will finally get to meet him on this trip!

Many of doctors Sardi's patients and families have put together a 2.8 mile walk in Baltimore's Inner Harbor to increase awareness and to raise funds for research for our cancers. Dr. Sardi sent me an email awhile ago inviting me to attend the walk and to meet him. I am proud to do so.

I don't know how many of Dr. Sardi's patients read my blog, but if you are out there and plan to attend the, I SO hope to meet you!!! I know I have communicated with many of his patients over the past 5 years. So if you will be there, please email me and give me a heads up so we can meet real time!! And I encourage anyone who lives close enough to attend to participate, it will be great!

If you want to view the walk's web site, the link is Heat it To Beat It

If you are interested, my personal fundraising web page for the event is Carolyn's Page

And Alice, thank you SO much for your comment and your support of me. You are right, we do all need and deserve an occasional break from the cancer boards, blogs, websites. Thank you for understanding...and I'm sure you've also helped others who need that break! You are terrific!

After Cancer

2010-08-10T18:42:00.000-05:00

I'm sorry I'm blogging less here. I am writing less in general. I have always written a lot in a multitude of forms...journals, poems, essays, more recently blogs. I've written a lot since about the age of 13. So this is unusual for me. I'm at a sort of strange crossroad. Cancer and survivorship have defined me and much of my writing since my diagnosis in 2001. A cancer diagnosis overwhelms your life, as does treatment, as does survivorship. It's ongoing and life-altering for many years. All we want after our diagnosis is to return to our "before cancer normal". Something we really can't do. We have to create a new normal after cancer. We are never who we were, our lives are never what they were before diagnosis.

I think a part of me is rebelling. I want to try to do life without thinking about cancer...at least a little bit. I read a book once about a physician cancer researcher who was diagnosed with a uniformly fatal cancer. He over-dosed himself on the standard chemotherapy for his cancer and almost died from the effect (he could do that, he was a physician). When he had survived past his life expectency, he gave up his cancer research and his medical career and went to live somewhere on a remote island. He couldn't live in the cancer world anymore, he didn't want anything to do with medicine. He ran away. I don't know if his physically running away helped him to mentally leave his cancer diagnosis (I'm guesing not). But he wanted to try to find a new cancer-free "normal".

I won't ever go that far ever. I truly believe I am meant to stay in the cancer community. I still answer many emails from newly diagnosed appendix cancer patients, and I love being able to do that. In less than 30 days, I will begin graduate nursing education in oncology. Next month I will probably go to Maryland to meet one of the leading appendix cancer specialists and to participate in "Heat it to Beat It".

I feel that I was given the gift of surviving my terminal diagnosis so that I could help others navigating the rare cancer medical maze. I truly feel I survived for that purpose. Is it a coincidence that I was diagnosed with the most aggressive form of appendiceal cancer at Stage 4, happened to be a medical professional who had spent years teaching lay people about their diseases and who before diagnosis happended to be fascinated by rare disease...I don't think so. I believe in Divine appointments, and I think my diagnosis and experience (and survival) was given to me so I could help others diagnosed with this rare cancer. It's my life purpose.

But just for a little bit, I've let myself feel safe from cancer, from the uncertainty, from cancer testing. I'm living a life not focused on the vulnerability cancer makes us feel. My husband and kids and I just did our annual "family vacation". Just the four of us, out of town and spoiling ourselves for a bit. Spending time together as a family; mom, dad and kids.
I don't know how many more years we will be able to do that...in a few years my kids will probably have their own families to vacation with...but I hope they continue the tradition with their own families we've had for many years. So I'm enjoying it!!

Back again!

2010-07-29T13:59:00.000-05:00

Sorry I’ve been gone so long! I went on an 8 day trip with my backpacking buddy to the Porcupine Mountains in the Upper Peninsula of Michigan. She doesn’t like hiking in the heat, and it was the coolest place I could think of (70s in the day, 50s at night). In the end we drove about 1600 miles and hiked about 30-35 miles of wilderness. We saw a peregrine falcon, three bald eagles, lots of evidence of wolves, snakes and even a black bear (it crossed the road when we were driving home!).

I love backpacking..the physical challenge, undisturbed nature, the hiking. I over-packed my backpack, I think it weighed close to 40 lbs. Backpacking makes me appreciate lots of things I normally take for granted…unlimited water, unlimited food, easy access to communication. We don’t get cell phone access most places we backpack and of course have no computer communication (it’s actually really nice to have a break from the “electronic world”). My partner is a paramedic and I’m a nurse, that’s kind of nice as in case of emergency we can’t call 911. There was a sign posted at the trailheads saying to be careful as “medical help is hours away”.

I packed few clothes and a lot of food; I am all about size and weight when we backpack. I love the little stove I’ve had for years, an alcohol stove. The stove and enough fuel (alcohol tablets) to last the better part of a week is about the size and weight of a deck of cards. My weaknesses are my inflatable Big Agnes mattress (2 lbs.), and books I carry as I read myself to sleep every night (4lbs….maybe I’ll invest in a Kindle for next time?). I also carry at least 3 liters of water every day (over 6 lbs) and a bigger tent I love (4 lbs.). My backpack itself weighs 3 lbs. I don’t know how, but the pounds add up! I took a water filter (1.5 lbs) that ended up not working. Don’t laugh, I filtered sediment from water with my clothes and then chemically treated it with Aquamira. I think next time I won’t bring a filter! The treated water was still tan colored from the tannin in the water, but still worked well for coffee with the new Starbucks instant every morning.

Next year I plan to backpack Isle Royale, an island only accessible by a three hour ferry or float plane. The island is a national park and backpackers dream.

When I got back, I worked a lot of hours at my job, and on my off day had my colonoscopy. I truly hate doing the prep and procedure with the IV start and hospital gown. I now hate any form of cancer testing. I don’t want to be a patient again!!! And I’m a bad IV start nowadays, post chemo and a million labs it takes multiple sticks usually to access my veins. They did get me in one stick this time, though!

I guess in the back of my mind I remember how quickly “normal” life can become “life altering” with just one test. I always have polyps that are pre-cursors to colon cancer. This time I waited over 3 years for my colonoscopy vs. the recommended 2. They only found one polyp this time, so my doc said I can go to three years between colonoscopies…yeah!!

More Help

2010-07-09T22:57:00.004-05:00

I was recently made aware of a source of more grants for cancer survivors. I was sent this email text:

"I saw your blog post on grant money available for appendix cancer survivors and wanted to let you know that The SAMFund is currently accepting grant applications for young adult cancer survivors. The SAMFund (http://www.thesamfund.org) provides sizeable “living grants” ($2K on average) to young adult cancer survivors (ages 17-35) to help pay for various transitional costs including medical and living expenses, certain types of tuition, family-building expenses, health and wellness, and more."

This link offers more information about the grants: Grants

Sorry for the late notice, but please check out the site soon, the deadline for Part 1 of the application is July 12th.

If I learn of any other grants, I will be sure to post them here!

I will be gone for a little over a week...will be driving about 1200 miles round trip to go on a wilderness backpacking trip with a good friend! Will touch base when I get back!

Advocating for Yourself

2010-06-29T21:32:00.000-05:00

One of the most important lessons I've learned being diagnosed with a rare cancer is that it is really important to be your own advocate. It is important to research and learn about your disease (as difficult as it may be to find information) and to seek out those physicians and oncologists who have treated many cases of your particular cancer. Many good oncologists and physicians may not have experience with rare cancers.

I have been in touch with 700 patients diagnosed with appendix cancer and am all to familiar with cases of misdiagnosis (one woman was treated for ovarian cancer for 5 years before she was correctly diagnosed with appendiceal cancer- she lost her battle). I have also communicated with many who received incorrect treatment initially and only sought treatment with rare cancer specialists when their cancer recurred, often in advanced stages; by then their choices were more limited than if they had sought specialized care initially.

One good resource is NORD, the National Organization for Rare Disorders, though that list of rare diseases is not complete (appendix cancer is not listed there, though Pseudomyxoma Peritonei (PMP), a syndrome caused by mucinous appendix cancers is listed). Other good web sources are the National Cancer Institute or National Institutes of Health.

Many rare cancers also have on-line forums, and while you need to be cautious of the information posted on these boards, often you can find good information about disease treatment and specialists from patients who share your diagnosis.

The best thing you can do is to arm yourself with good information and to compile a written list of questions to ask physicians when you seek opinions for treatment; often it is good to get more than one opinion on treatment protocols. You can self-refer for a second opinion, the request for a referral to a specialist does not always have to be made by your attending physician.

In my case, I sought three opinions before agreeing to treatment, and though it delayed my treatment for a month and a half, it was a good thing, as I in the end treated correctly for my disease. A great article to read about experiences others have had when diagnosed with a rare cancer is Cure Magazine's Rare Cancer Survey, published in April of 2009. Being aware of the pitfalls others have faced may help you avoid your own as you seek treatment for your rare cancer.

Two good things!!

2010-06-13T10:00:00.005-05:00

I want to bring awareness to grants available for appendix cancer patients. I met a woman in Washington DC a few years ago after being in contact with her via phone and email for over a year. I liked her a lot.
She had been diagnosed with signet ring appendix cancer and had had cytoreduction surgery and HIPEC about a year and a half prior to my meeting her. We had lunch and talked for a long time in DC, she was doing well and wanting to get back in shape, we talked about health clubs and exercise programs. She passed just a few months after I met her; she had a sudden recurrence of her cancer that was not operable. She left behind a husband and two teenage children.

There were donations given at her funeral, and her husband wants to give a single grant from that fund to an appendix cancer patient yearly for 5 years. They are not very large grants, but are enough to help those going through tough times. I've been in contact with over 800 patients newly diagnosed with appendix cancer, and I know some are struggling with job loss and financial difficulties related to their diagnosis and treatment.

The husband wrote this for me to post on my blog/website in looking for candidates for the grants. For those of you who might be interested:

Grants for Appendix Cancer Patients

"An anonymous donor, whose wife had appendix cancer and survived for 20 months before dying, has a limited amount of funding available to help people and families who have received an appendix cancer diagnosis. Please contact Carolyn with your request for a small financial grant and be prepared to show proof of diagnosis.

The donor will provide the limited grants, which can be used for travel, information gathering, second opinions, help with food, babysitters, take a day off from work, whatever is needed.

The donor only requires that you allow him to speak with you and tell you about his wife and also that you keep in touch with him with periodic updates on how you are doing and how the grant helped you, so that he can share that information with donors to his wife's Fund, and his wife's family and friends."

Hair 4 You

I received another email from a woman who is trying to establish a non-profit organization and who is asking for help...not monetary donations, just a vote! I love her idea, as I know how much kids and teens are affected by hair loss and changes in body image. My youngest daughter loves her hair, her greatest concern when I was diagnosed was that chemo might cause me to lose my hair. She couldn't contemplate a person being bald! I am pasting here the email I received from Rebecca; it would be great if you could help her!

"My name is Rebecca and I am 24 years old, from Chicago. I'm currently in nursing school and I'm also a 2 time cancer survivor. I have set up a charity, called "Hair 4 You" to provide kids/teens with wigs due to medical hair loss. Please keep reading, I am NOT asking for money! I am currently in the running for the Pepsi Refresh Challenge to win $25,000 to get my charity off the ground and become an official non-profit 501(3)c.
The top ten organizations win money at the end of the competition and in the past week I have moved up over 90 spots but am still not in contention to win. Voting is absolutely free and requires a simple email address and password. I am wondering if you can do anything via your blog to help me spread the word and earn more votes. As well as earning more votes, I'd like to get the charity out there so I can start helping people once we hopefully receive money."
Click here for Voting Site Hair 4 You:

Click here to Vote On Facebook: "

Emotions, Stress and Disease

2010-05-30T19:25:00.001-05:00

I will soon be attending a professional seminar. As a nurse, I am often invited to various seminars, but none intrigue me enough to pay the cash. But recently I was invited to a seminar that truly intrigues me; Emotions, Stress and Disease.

As a member of the cancer community, I have become truly intrigued by the emotional turmoil cancer creates in us. Unlike other illnesses where you are treated, recover and move on, cancer is different. It does not just cause physical turmoil, but emotional turmoil as well...and I've come to learn that often the physical recovery is much easier than the emotional recovery, the living with fear and uncertainty after physical healing.

I also believe that biology plays a big part in our emotional well-being. Brain chemistry changes bring on many mental illnesses. I worked for a bit on a psych unit and was blown away by the changes in patients who were put on the right meds. For some, it wasn't counseling that cured them; it was the effect of medication on their brain chemistry. I'd taken care of schizophrenics who were talking to imaginary people and who were totally "out of it" who a week later on the right medications seemed totally normal. The same with many bipolar patients. Childhood and life stresses and circumstances play a part for many with mental illness, but I came to learn biology and chemistry are also involved.

Those of us with cancer get a double whammy...we are subject to terrifying life circumstances, but I'm sure our brain chemistry is also affected by the many physical stressors we face; surgery, chemo, dietary changes, activity changes etc. We have overwhelming physical and psychological stressors all at once. Most of us women who have appendiceal cancer also lose our ovaries and are thrust into surgical menopause, our hormonal balance changes drastically overnight.

The seminar I will be attending addresses both the physical and emotional components of stress and its effects on our brain chemistry and biology, also how our body chemistry and biology play into our emotions. It will deal with the neurology of emotions, neurotransmitters and stress hormones including adrenalin, cortisol and ACTH.

I think it will be really interesting...will keep you posted with what I learn at the June 10th seminar!

Back again!

2010-05-14T22:45:00.002-05:00

Sorry it's been so long since I posted! I got really busy! We moved into a house that was built in 1917 20 years ago, and it's been an ongoing home improvement project since then...and we've even gotten to the point where the first rooms we redid are in need of redoing AGAIN in addition to the rooms we never tackled.

For whatever reason, I've made it my mission to have the whole house done at once with no more impending projects...so I've knocked out 4 walls of plaster and lathe and primed and painted the new drywall in the kitchen, removed the old wallpaper in our bathroom (we didn't know when we put it up you are supposed to use "sizing" first, so it took me three 8 hour days to get it down). I've since repainted and redecorated the bathroom, had the tub refinished, painted my living room and dining room, re-painted and redecorated my kid's room and tomorrow will start painting and staining our deck. I need to repaint and re-floor my office too as we knocked out and re-did a wall there that's now in need of priming and painting. I want to redo our gardens too. I also stained and finished a door and all of the woodwork for the kitchen, the new cabinets to be installed next week!

I've also been looking for another job as my agency hours dried up (good thing as I had the time for the home improvement stuff, though!) and have also retrieved my kids and all of their belonging from college for the summer. Road trips and loading and unloading truckloads of their things!

I did find a new job, something different for me, but something I've done before for short time years ago and loved. I will be working at an inpatient facility for troubled teens. Teens who are struggling with drugs and alcohol and behaviors that have had bad consequences. Most are admitted for a 90 day rehab. I think being in the cancer community for so long has made me truly appreciate the effect that emotions and emotional struggles have on our lives. I struggled greatly and made bad decisions as a teen and had horrible self-esteem then, so I feel I will be able to relate to these kids and hopefully help them. Kind of a nice change of pace from hospital ICUs and IMCUs.

I've also been taking a statistics class (just took the final) and applying to grad schools. I was recently accepted into a graduate program at Loyola University in Chicago to work on my graduate oncology certificate and plan to start full time on my master's degree as a clinical nurse specialist beginning next spring at Purdue University. I hope to work on both degrees simultaneously. Kind of fun, my daughter and I will hopefully be attending the same college next year! Maybe we'll be able to have lunch between classes!

So...that's my excuse for not posting in awhile...but it's great to be so forward thinking now, to be able to contemplate a future, even if I no longer take it for granted. On May 16th I will officially be 9 years cancer-free...the limbo of life after cancer has lessened.

Back Home!

2010-04-23T10:48:00.004-05:00

I am just back from my trip to Washington DC. It was wonderful. I arrived on Friday night and walked several miles in DC on Saturday. I walked to the National Mall and to the Smithsonian Aerospace Museum, the most visited museum in the world. I took a tour highlighting the Apollo space missions and watched an IMAX presentation about the Hubble telescope...I love seeing pictures from the Hubble on-line. Saturday evening I went to meet the family of a patient with appendix cancer I helped four years ago, she is still cancer free and doing great, we talked until almost midnight, I think she will always be a friend!

On Sunday I attended a church service at the National Community Church, then had lunch with Dr. Esquivel at Union Station, it was a great lunch...I admired him before but do even more so now. I am on the board of his new organization, the American Society for Peritoneal Surface Malignancies, so it was a working lunch.

I spent Monday in the PEW headquarters and met so many great people: breast cancer and lymphoma survivors, a 16 year HIV survivor, and a terrific ER physician who is a heart transplant recipient. I also met an ethnobotanist ( Paul Alan Cox) I truly admired; I ordered his book Nafanua: Saving the Samoan Rain Forest. All were people, like myself, who had benefited from drugs derived from nature (except the ethnobotanist, who has helped develop drugs from natural sources). I had some time left over on Monday so did a bus tour of DC...mostly because I love hearing about DC trivia. For example, Washington has an exact replica of the Liberty Bell, but twice the size...in Washington it is called the Freedom Bell. So interesting, the original liberty bell is engraved with the word "Pennsylvania", but it is misspelled (one n and not two)...so to make it an exact replica, the word is also misspelled on the Freedom Bell. There's lots of fun DC trivia.

Tuesday and Wednesday I was on Capitol Hill to help promote the Global Conservation Act, which will help our nation coordinate efforts worldwide to preserve nature and nature's pharmacy. I met with a representative who worked as a police officer for 33 years before entering politics, and who wrote a book about his capture of a serial killer, Chasing the Devil. All of the proceeds from the book go to helping kids born to crack and heroin addicted mothers; I ordered the book the day I met him. I learned of politicians who are truly caring and who truly want to make a difference. Many support efforts to conserve nature. It changed my view of politics and politicians. There are many good people on Capitol Hill who serve us well.

Thursday I had a "free day", and after walking almost 10 miles to sight-see during the week, I decided to just curl up with a book in my hotel room, though I did visit Lafayette Park. Then I spent the rest of the day traveling...to Reagan airport, then to O’Hare, then the bus ride to Indiana, then the 45 minute drive home from the bus stop. Amazing that it's only a two hour flight to DC, but the travel in the end takes the better part of a day (plane was late, of course).

So though I love DC and loved my experience there, I'm glad to be home! But I have lots of good memories and learned so much...and met several people I hope to stay in touch with!

New Survivor Story!

2010-04-13T13:52:00.000-05:00

Enough about me...I want you to read Daniel's Story, he sent it to me just today and I wanted to post it right away, so it is already posted in the "Survivor Story" section of my web site and blog. Daniel was diagnosed with extensive disease at Stage IV and was initially told he had 12-18 months to live. He is an almost 10 year survivor now. I loved his "Ham Causes Cancer". In my house "Egg Nog Causes Cancer"! I had my first cancer symptoms after drinking egg nog I assumed was bad, to date my kids no longer drink egg nog as they associate it with cancer. Ham was the beginning of his journey, egg nog the beginning of mine. Fun trivia!

I would like to thank Daniel for giving hope to so many, he, and the other survivors in my "Survivor" section are my heroes. I am so grateful to those who are willing to share their stories.

It was interesting to me that both of my recent survivors have talked about the fact that we never really feel "safe" again after a cancer diagnosis, I am the same even at 8 years cancer-free. We forever after live with a sense of uncertainty...goes with the territory.

While it is a difficult way to live, it does have some benefits. I know I now prioritize better; lots of "before cancer" things don't make the cut in my world now, I live much more purposefully, I think. And that's a good thing!

Washington DC

2010-04-13T11:00:00.001-05:00

I will be leaving this Friday for Washington DC. I will be there almost a week. I will be working on Capitol Hill Monday thru Thursday to help promote the Global Conservation Act. I am involved in an arm to preserve natural resources for the health benefits we derive from nature. Seventy percent of all cancer drugs have their origin in natural sources. Thirty percent of current cancer therapies are derived from rain forest plants...and only 1% of rain forest plants have been tested to date to see if they might benefit us. Without conservation, rain forests may be forever gone from our earth in 40 years. I myself was treated with a drug derived from the bark of an Asian tree. I am passionate about conserving our resources, so feel privileged to be offered this opportunity to make a difference.

I am leaving a few days early, as I hope to connect with a mother in DC I helped find treatment for appendiceal cancer several years ago and who is now a cancer-free survivor. I plan to meet with her and her family on Saturday. On Sunday I plan to meet with one of the nation's renowned appendix cancer specialists. I also hope to attend a church service in DC on Sunday. I've read several of Mark Batterson's books and LOVE the way he thinks. He is the lead pastor of the National Community Church in Washington DC. His church service (held in a former crack house turned coffee house, yeah!) is only blocks from where I am to meet the specialist. The church service is at 10AM, I am to meet the specialist at noon...so should work out! I have one day free until 6PM, so hope to visit one of the Smithsonium Museums...or the Spy Museum or the Aeronautical Museum. So much to do and so little time.... Slim possibility I will participate in a TV interview on Thursday, Earth Day. Wish me luck with all of that! I'm a tad nervous.

I am excited to go to DC again. Funny thing, I went there for a cancer conference a few years ago, and was disappiointed the conference was in DC. I've never been interested in history or politics. I'd never wanted to go to DC. But in the end I fell in love with our nation's capitol. I saw the Washington Monument, the Vietnam Memorial, the Lincoln Memorial. I learned of lots of interesting trivia about our nation's Capitol. I fell in love with their subway system. I loved the Reagan Airport. Like Chicago that I frequent regularly, Washington has it's own personality, it's own character.

So I am excited to again be visiting DC. I'm trying to talk my kids into a family vacation to DC one day. They have the attitude I once did...DC doesn't sound very interesting to them. I want to change their opinion of our nation's capitol.

I hope to write from DC, but if I am not able to, I will write when I get back!

Cool Things!

2010-04-09T21:37:00.002-05:00

Last night I attended an event for the Northwest Indiana Society of Innovators. I was nominated and accepted for membership the past two years by one of my board members, so I get to be part of that elite group of people. Last night was their first Pride and Pedestal event.

The Pride and Pedestal event offered presentations by ten selected members in a five county area; it was amazing. One invented a digital video camera for use in medical and biological research that is now used by Harvard and John Hopkins and many renowned facilities nationally and internationally. Another man, now a multimillionaire, invented a solar powered attic fan. Two physicians were there, they were honored for starting a three hospital program that offers same-day mammogram and breast biopsy results (I thanked them on behalf of cancer patients everywhere who are immobilized with anxiety while awaiting test results) I told them of our own "scanxiety". I asked if they would someday strive to offer same-day CT results? They actually are hoping to offer that down the road.

The coolest thing was that I was asked to be one of the 10 presenters next year for my work with appendix cancer patients. What is great about that is that it will help more people become aware of appendix cancer and treatments now available through specialists. The public and the medical community need to know more about our disease so that patients can be properly treated when they are initially diagnosed. I talk to so many who finally see specialists familiar with our disease only after multiple surgeries and prolonged treatment, and then only when their disease has recurred. I talk to many who are initially misdiagnosed (one woman was treated for 5 years for ovarian cancer before she was correctly diagnosed with appendix cancer). I think public awareness is something we really need. Maybe I can help that happen!

The Empowerment of Hope

2010-04-06T22:34:00.001-05:00

When I was diagnosed with cancer, I so looked for hopeful things. I wanted to know of other cancer survivors who had defied their odds. I wanted to read survivor stories, but not of breast cancer survivors…those stories seemed a dime a dozen. Their cancer was different; it had an 80-90% survival rate. My particular cancer had an only 10% 3 year survival rate. I wanted stories from those who had survived my long odds, and they were few and far between.

I initially wanted the illusive 5 year survival, which used to coincide with the word “cure”, forever done with cancer and oncology appointments and testing. Then I learned that they don’t use the “cure” word anymore, we are only “in remission” at 5 years. At eight years I still see an oncologist, I guess I will forever be a “cancer patient”, my oncology visits won’t ever be over and done. Over time I learned of survivors who had recurrences after the five year mark; that broke my heart, both for them and for me. Would I ever feel safe again, would it ever be over? It seemed not. When I started to feel a little bit safe as an 8 year cancer survivor of my aggressive pathology (was I finally cured?), I was contacted by another 8 year survivor of my particular pathology, which often kills in 2-3 years, who had been cancer free for 8 years also. Then at eight years she had a recurrence of our cancer. Maybe I wasn’t safe even after 8 years?

Funny thing after I was diagnosed, I couldn’t make an appointment for a 6 month dental cleaning. I couldn’t say the words “next year”. I was afraid to buy anything for myself, clothes included, as I had always been frugal and felt myself to be a bad investment. I made no future career plans, vacation plans, I invested nothing in retirement. I felt my future was too uncertain to bank on a “tomorrow”. And part of me felt like assuming a future might jinx me, might even bring on a recurrence?

In the end, I lived long enough (and my weight fluctuated enough) that I needed something new to wear. I bought new clothes. I made tentative future plans, though I still don’t contemplate retirement. I was finally able to commit to a semester of school. That led to a plan to commit to two more years of school, to obtaining two new college degrees. I am contemplating a new career path. I might be assuming too much, but what the heck, I’ll take the risk. Planning for a future, even an uncertain one, is hopeful. And living with hope is a good way to live. Since I started school, I have suddenly felt empowered to contemplate a future. I’ve since painted almost all of the rooms in my house, am remodeling rooms (to enjoy in the future). Maybe we need to take steps towards a future even if it is hard, even if our future seems uncertain?

A woman who read one of my recent posts said she finally bought a camera she wanted but hadn’t purchased earlier as she though in her uncertainty it might be a waste of money. But the purchase in the end gave her a sense of hope.

In hindsight, I’m wondering if assuming a future in light of uncertainty is a good thing to do. If assuming a future might help to make it a kind of self-fulfilling prophesy? Maybe we need to indulge ourselves in hope for a future even when our future is threatened? I think in the end, in a sort of holistic way, it is healthful.

Moving forward

2010-03-31T22:52:00.002-05:00

I'm at a crossroad in my life. I recently turned 50, and I recently became an empty nester. When my first daughter left for college, I was kind of lost. I cried unexpectedly and often. My kids had been my life, my focus and my priority for years. My life had been all about them for almost two decades. It was hard to see the first one leave the nest.

When my second daughter left for college, I dealt with it better. I'd become accustomed to your kids leaving home as the norm. I still love and miss my kids, but we are close and communicate a lot. I am so glad I got to be here long enough for them to leave me, that I didn't leave them when I was diagnosed and they were only 10 and 11 years old, when I was so central to their lives. Their leaving me, in the end, was a gift. I cherish now that they've left the nest and have become their own adults separate from me.

I now love seeing my kids become independent adults with lives that don't revolve around me. They have their own hopes and ambitions and dreams, I am not central anymore. I kind of love being dispensable. If I died now, my kids would be okay, they have lots of dreams and lots to live for, they could move on. They love me, but they'd be able to manage without me now. I am grateful for that.

But in the end this time in my life has also opened new doors for me. I got to thinking...the first few decades of my life involved me growing up and becoming an independent adult. The next few decades were about being a wife and mom (and dealing with a cancer diagnosis and treatment). Raising my kids was my priority; my needs didn't matter so much those decades.

Turning 50 as an empty nester, I have come to realize my remaining years, however many they are, can be mine. I've fulfilled obligations the first 5 decades of my life. Now I can focus on me! And it's okay. If I am lucky enough to live to be 70, I have two more decades to grow, to realize dreams and to develop new relationships without so many other obligations. It's kind of liberating. I suddenly want so much. I am willing to plan for a long-term future; even though I understand after cancer it is not guaranteed. I am back in school and loving it, I love learning, and I love growing. I love connecting with students and professors. I am looking towards a new career path. I am remodeling my kitchen. Redecorating my bathroom. Finding hope in looking towards a future. I know a future here maybe only an illusion, but I like the illusion.

I think it's okay to plan a future and to reach for goals, even when you live with the uncertainty of a cancer diagnosis. Reaching for goals is hopeful on its own. And the cool thing is, cancer made me contemplate all future scenarios, in this life and beyond. So I know I have a future, even if it ends up not being here in this world, this reality. I am guaranteed a future regardless. Only location can change.

Maybe I am gifted in being able to finally contemplate a future. And maybe knowing my future is tenuous and not to be taken for granted will make me value it that much more, help me make that much more use of my time?

And as a side note, there are several benefits to being an empty nester, I've learned. My utility bills are about half of what they used to be, the grocery bill is way less, eating out is cheaper when it's just two, the house STAYS clean and is quiet when you want to read a book, and my husband and I spend more quality time together. We've been having a lot of fun!

The crossroads in our lives (and there are many of them) can be initially painful, but they are always new opportunities for growth and happiness.

Survivor Stories

2010-03-30T22:47:00.001-05:00

I have been working with several appendix cancer survivors in hope that they will write their stories for me to post to my website and blog. Alice recently posted her story, Alice's Story. I have other survivors 3-9 years out from diagnosis who have told me they will also write their stories. I will post links to their stories as I get them.

I am very greatful to those survivors who are willing to offer help and hope to the newly diagnosed, they are my heroes.

I truly stuggled to find hope when I was diagnosed. I loved cancer survivor stories then, though I read of no appendix cancer survivors. I never even knew of another diagnosed with my cancer when I was struggling with my long odds. Ours is a lonely cancer.

Again, I am so grateful to those who are working to help me with this project and will post stories as I get them!

Living With Uncertainty

2010-03-22T23:17:00.005-05:00

I had an interesting discussion with my husband tonight. A co-worker our age that we both liked and respected passed away a few days ago. When I heard he had a terminal diagnosis, I right away assumed he had cancer. He didn't. He had something similar to mad cow disease, but an inherited prion disease. Prions are small bits of protein that are indestructible by heat or disinfection but when abnormal, destroy the brain, the nervous system. His grandfather had died of the same disease, he inherited it. There was nothing he could have done to prevent it, no medical treatments available. A healthy lifestyle would have made no difference. The disease is always fatal.

We talked about those who may have inherited fatal genetic diseases, like his, or like Huntington’s. If you could, would you want to do the genetic testing to find out if you carried the disease and would die of it before you ever hit old age? Would you want to know you would die young?

My husband thought knowing would have advantages...you could get your affairs in order and live every day to its fullest knowing your time was limited.

I remember thinking I'd felt the same way...before my own cancer diagnosis. I used to think I'd want advanced warning before I died. To get my affairs in order, to plan my own funeral. To live every day like it might be my last. Maybe I wanted that sense of control...after all, I am a control freak.

But living with a cancer diagnosis changed all of that for me. Trying to live your life without planning for a future is very difficult. For several years I only planned my future between CT scans. Healthy people take for granted living with a future in mind...but don't realize it. Healthy people live thinking of future vacations, promotions, grandchildren, career goals, dreams, retirement. We are, as a society, very future oriented, I came to realize. When you can no longer assume a future, it's very hard. You feel very lost.

And the living one-day-at-a-time that is so glamorized (but not in the cancer community) is also difficult. I tried it for awhile after I was diagnosed. Since I had to make the most of every day, I felt guilty watching TV, sleeping in, relaxing. I was afraid to reprimand my kids even if it was justified (what if that was the last thing I ever said to them?). When I tried it I felt everything I did had to be profound and meaningful. Making the most of every day is hard work; it's not a normal way of living. It's a lot more than just "smelling the roses".

Since a cancer diagnosis and dealing personally with my own probable demise, I have changed my point of view. I hope in the end I die suddenly; a plane crash (I have NO fear of flying now), or a heart attack or car accident. Something sudden and quick and unanticipated. I don't want to live my life in the shadow of anticipated death. I know we all will die one day, but I want to live the rest of my life not thinking about it. I want the naivety I had BC (before cancer). The assumption I had that I would live until I was old and my body was worn out and used, that I would live past the time I had achieved all of my goals.

I think the one plus of a cancer diagnosis is that it makes us grow spiritually. While I don't ever see cancer as a "gift" it does make us grow and develop our character in ways we wouldn't have otherwise.

My big hope is that our friend and co-worker who recently died was brain damaged enough not to be aware he was dying. Maybe he never had to try to live one day at a time...and I hope he never got his affairs in order before he passed. I hope that he was not aware of the fact that he was dying and leaving his wife and four kids. I hope he was oblivious to his transition and never contemplated his own death.

The living with terminal uncertainty on every level is the hardest part.

Can you help? Survivor Stories Needed!

2010-03-15T21:52:00.002-05:00

Dear Readers,

I have been in the appendix cancer community now for almost 9 years, I was diagnosed March 29, 2001. I have communicated with about 800 people newly diagnosed with appendix cancer and with their families since my own diagnosis.

Many learn of those who have lost their battle or read some of the more dismal statistics. Ours is a very difficult cancer. I've communicated with a few appendix cancer patients who have also had breast cancer, they've said breast cancer was a breeze in comparison. I kind of think if I am ever diagnosed with breast cancer, it will be kind of like a cold in comparison to pneumonia. Short-term chemo, minor surgery, great survival stats, lots of support and research, and lots of public awareness...though I would lose my hair with that chemo. Much different from our massive surgeries, prolonged surgical recovery, prolonged chemo and absence of support. Ours is a difficult and lonely cancer. Hope is hard to find sometimes.

I have had patients ask me if there are other long-term appendix cancer survivors out there. I know there are...not as many as have survived breast cancer, but I know we do have some. I have been contacted by a few, but only a few long-term survivors. I think most who find me and contact me are the newly diagnosed, though I think it's interesting that some long term survivors have found my site. They are still googling appendix cancer even years down the road. It never really leaves us, we never fully move on and forget the battle that forever changed our lives.

My good friend who recently passed asked me if I could find a way to add survivor stories to my blog and website. I would love to do that. We all need hope.

I am asking for anyone who is a long-term appendix cancer survivor (3 years or more) to share their stories. I could post them as guest posts on my blog, or if you are willing, I would create permanent links to survivor stories on my both web site and blog. The stories would need to include your pathology (mucinous adenoma, mucinous adenocarcinoma, adenocarcinoid, signet ring etc.) along with tumor grade (well-differentiated, moderately differentiated, poorly differentiated etc.). If you are a long-term survivor, even with recurrences, that also counts. One woman wrote me who has survived appendix cancer for 20 years with periodic recurrences...she has never been cancer free, but married, had a child and has lived a full life WITH appendix cancer for two decades.

If you are willing to share your success story that so many desperately need to fuel their battle, please consider helping those newly diagnosed.

If you are willing to help, please email me at carolyn@appendix-cancer.com.

And a very heartfelt "thank you" in advance.

Carolyn

Integrative Cancer Care

2010-03-11T22:47:00.002-06:00

I have a kind of fun story. I outlasted my initial oncologist, she retired and moved to California. My oncology practice told me they had assigned me a new oncologist. I was upset at that, I told them I chose my own doctors, no one picks them for me. I was a nurse and checked around the medical community before seeing a doctor, I made my own informed decisions, thank you very much. They told me the oncologist they assigned me was new to the practice, to please give him a chance, they liked him. I reluctantly told them I would see him once and make my own decision.

Well, I fell in love in a doctor/patient kind of way. When I first met him we talked for 2 hours before even he examined me (think we kept a lot of other patients waiting)...about the latest in cancer research, about books it turned out we were both reading about oncology, about the latest advances in cancer treatment and integrative medicine. We talked about the unmet needs of cancer patients.

When I told him I had initially been rejected for treatment at a large university hospital in a neighboring large city, he immediately told me the name of the surgical oncologist who had rejected me (how did he know that??). Turned out he had worked with that particular oncologist and had left that practice in part because of him. He told me of his dream to make our large cancer center more integrative and holisitc. To offer accupuncture, exercise programs, dieticians, support groups and social services (to date the practice offers only office appointments and chemotherapy). He wants a new building complete with gardens. He cares about the depression many cancer patients, especially those aged 30-50, suffer (I was once one of those!). Turns out he even refers appendix cancer patients to HIPEC specialists and communicates with the same specialists I do!

I share his dream...we as cancer patients are more than just a medical diagnosis, we need so much more than office visits and chemo. The two biggest cancer centers in the states, MD Anderson and Memorial Sloan Kettering Cancer Center, now offer integrative medical services. That needs to be a part of every oncology practice.

Turns out my new oncologist wants me to work with him in accomplishing his goals in the future...that would be my dream job!! I hope it one day becomes a reality. I recently told him I do a lot of work in the cancer community for free, I'd work for him as a volunteer. Hope he takes me up on it! I truly hope I get to be a part of his dream...and I'm keeping my new oncologist!!

Herbs and Botanicals

2010-03-09T23:04:00.011-06:00

I've been learning more about herbs and botanicals in cancer treatment lately. My friend who recently passed had been a nurse and med school student and chose to use several alternative treatments, including Chinese herbs, IP6, curcumin and a few others. For her they didn't work, but she also started them when her disease was very advanced and beyond western medical treatments. In the end she felt one of her herbals caused her cancer to advance. Her CEA went from 300 to almost 2000 just a few months after she began using one herbal therapy, her CEA had not increased for over a year before then.

I think many believe over-the-counter herbs and supplements are universally safe, they are kind of seen as "vegetables" since they are from natural or plant sources. But that's not always true. St. John's Wort, an over-the-counter herb used to treat depression, can interfere with the effectiveness of some chemotherapies (it would have reduced the effectiveness of my particular chemotherapy by 40%). When everyone was sure anti-oxidants were healthful, one study found an almost 30% increase in lung cancer in smokers who took large doses of Vitamin A. Too much folic acid, a vitamin (more than 1mg a day), is thought to promote cancer growth.

Interesting, patients on the chemotherapy Velcade found that drinking green tea prevented all chemo side effects...it was found that the reason it prevented side effects was because blocked the action of the chemotherapy altogether and made it totally ineffective.

This is a great series of short videos published by Memorial Sloan Kettering, one of the nation’s leading cancer treatment centers (where I was treated): Understanding Herbs and Botanicals in Survivorship. The lectures discuss nutrition, herbs, supplements and alternative and complementary therapies. They are worth watching. I'm adding today the link Ester posted in her comment, another great resource, About Herbs and Botanicals also offered on MSKCCs web site. I've put the link on my site a few times before, but not for awhile. I probably need to add it to my sidebar!

I was recently accused of being anti-alternative and anti-complementary therapies. I am not, though I prefer to go with treatments that have been tested and proven in clinical trials. It's interesting; I have become very involved with the Alliance for Global Conservation and will be traveling to Washington DC in the near future to help with their efforts to preserve natural resources for pharmaceutical use...70% of current cancer drugs are derived from natural sources. My most effective chemo drug was derived from a tree, the Chinese Happy Tree...in essence a refined and tested herbal therapy. Plants evolve over hundreds of years to produce chemicals to protect them from disease, and some of the chemicals they produce also help us prevent and conquer disease. Many drugs I give as a nurse...digoxin, coumadin and many antibiotics are derived from plant sources.

Sometimes I scratch my head when patients tell me they don't want to use chemo as they prefer to use herbal "natural" remedies...many of our chemo drugs are refined natural and herbal remedies derived from plants and nature. Some tell me they don't want the "poison" of chemotherapy...well, maybe the chemicals in the chemo were "poisons" the plants developed to protect them from disease and threats.

For what it's worth, I do drink green tea for health benefit, and I drink soy milk sometimes (it tastes an awful lot like regular milk, which I love, but has a longer expiration date!). I also take an herbal, milk thistle, as studies have shown it to protect the liver from toxins, and I am on a high dose of another drug for my RA that can cause severe damage the liver. I have checked, it won't interfere with any medications I am on. I don't really know if it protects me, but for me it seems harmless and may be of benefit...or maybe I'm wasting my money, but it's not real expensive.

I guess what I think is most important is to tell your oncologist if you are using any herbal therapies or supplements (including green tea) in case they will interfere with your cancer treatment. As a nurse, we used to ask patients what prescription drugs they used, we now also ask them about herbals and supplements they take in case they might interfere with other prescription drugs we give them. We need to cover all of our bases.

I'm Back!

2010-03-08T22:29:00.000-06:00

Just a quick update! My husband and I returned from our vacation this weekend, it was wonderful. The weather was cool for the most part, so I didn't wear a lot of the shorts and tank tops I brought, but did wear a sweater and jacket several days (so glad I brought them!). The temps were in the low 60s for about 4 of the days and in the 80s for two. I did manage to get a bit of a tan, though!

It was still so nice to be away from 20 degree temps and to see green and flowers and NO SNOW!!! We were in the Bahamas for a day, and then in the Virgin Islands. We took a catamaran from St. Thomas to St. John and spent some time on a beach in St. John. We also visited St. Maarten, a very beautiful island. We went near a private island in the Virgin Islands that is for sale on Ebay for 12 million dollars! I was surprised that the Virgin Islands are mountainous...they are beautiful! I wanted to camp there, beautiful wooded mountains, some islands seemed uninhabited and just waiting for a backpacker like me! Fun coincidence, while there my backpacking buddy texted me to say it's almost backpacking season and we need to start making plans!

We came back to still some snow on the ground, but it's melting and temps are in the 40s and 50s. So hopefully spring will be here very soon!

Sunshine!

2010-02-23T13:27:00.003-06:00

I will be gone for the next week, we are leaving early Friday morning...away from winter, out of the country, in the Eastern Carribean. I will be enjoying sunshine and green and warm breezes with my husband of 22 years. It will be a kind of second honeymoon for us...the last time we took a trip with only the two of us was our honey-moon! There are some good things about being empty-nesters!

I am not a fan of winter, and by February I've had enough of snow and cold and gloom. In my perspective, the only good thing about winter is that it so makes me appreciate spring. Maybe I'd take for granted sunshine and warmth and growing things if I lived in a more temperate climate?

I was in San Diego for awhile one April. They have an average year-round temperature of 70 degrees. While I was there, the natives complained loudly about a day that was 50 degrees (SO cold!) and another day of 80 degrees (SO hot!). I live where the yearly temperature varies from below zero to 90 degrees, so couldn't relate. I felt they were spoiled!

So for the next week I'll be without internet access and cell phones. And though I love the ability the internet has allowed me to connect with other rare cancer patients, I will be glad to be away from electronic communication. I've read, and I agree with, the statement that while we are more connected (electronically) than ever before, we are also lonelier than ever before. Since the electronic age, I've come to truly value real time communication, complete with body language and vocal intonation. I tried Facebook, but it wasn't for me. I in the end deactivated my account. I guess it's just not my way of relating to people.

So I will be enjoying "real" time with my husband over the next week, and am sure I will have lots of emails to answer when I get back...and I will!

BTW, I've learned some of my email replies go to folk's "junk" mail folder...so be sure to check your "junk" mail...I also have several legit emails that end up in my junk mail, so always check it. Not sure how that works in this electronic age....

I lost another friend.....

2010-02-22T19:27:00.004-06:00

I lost yet another friend to appendix cancer today. My closest appendix cancer friend.

She found my website just after she was diagnosed, and we have been in touch often in the years since. She was my age, and also a nurse...so we shared a lot right away. She, at age 50, defied the odds of being female and being older and was accepted into medical school. She'd always wanted to be a doctor. She was doing well in medical school...until she had appendicitis, until she discovered she had appendiceal cancer. She had a hemicolectomy and then returned to med school, she was going to be one of the survivors. Then her cancer recurred. She had a second surgery, and as a result of that surgery the nerve to her right leg was damaged. She became disabled. But she still returned to med school. To her dream.

Her cancer then recurred again, this time inoperable. She decided to forgo chemotherapy and to instead use alternative therapies. They didn't work for her. We communicated once, sometimes twice a day as her life deteriorated. She was dying and I knew that. I hated that she wouldn't be my friend forever in this life. I hated that she would never realize her dream of becoming an MD. I hated that cancer was stealing another friend from me.

She suffered unending pain and nausea and disability in the end. Her quality of life deteriorated to the point that she wished the relief of death, even if it separated her from those she loved. She finally admitted herself to the hospital for palliative care. She died just days later. While I was so sad to lose her, I'm relieved that she is finally cancer-free.

But in the end, she still advocated my dream of further education. She said initially I supported her when she was in school, and she wasn't able to finish, but maybe there was a justice in her encouraging me to pursue my dream of further education...at least one of us might graduate! We were always each others cheerleaders. We shared a lot...our dealing with a cancer diagnosis, our loves, our lives, our feelings.

Why couldn't she have been a survivor like me? Why couldn't she have realized her dream of becoming an MD? She only wanted to help people.

I have no answers.

I got to say goodbye to her before she passed. I told her how much I would miss her friendship. I asked her to try to contact me from the great beyond when she gets there...she said she's always been a bird lover (me too) so will try to contact me as a pink finch. I have a bird feeder and get a few finches, but NONE of them are pink. I will so be looking for a pink finch. If I see a pink finch, I'll know my good friend is just a parallel universe away from me.

I will be sure to keep my bird feeders filled this year. Especially with finch food.

Guest Post # 2: Mom's reponse to son's scholarship essay

2010-02-22T06:21:00.003-06:00

I think I am so much more emotionally sensitive than my son has ever been. The essay he wrote for this scholarship and for a college application struck me as very thoughtful in its almost winding perusal of our ancestors and their experiences as compared to what we face today in our own lives.

My son is my only child, and I still do not know if he is truly worried about my prognosis. He holds so much in and for the most part, we are opposites many ways. I do not hold in my emotions on a daily basis, but Will seems to do this, funny thing is though, he may not even FEEL the level of emotionality that I do. This essay he wrote over a year after my diagnosis; told me for the first time, that he was concerned about perhaps losing me to cancer sometime soon. I have not told him the gory details of how aggressive the signet ring call cancer is known to be, but is it really aggressive for every patient? I don t think anyone knows. I love him so much, I will assume it is NOT aggressive in my case.

For now, I will be satisfied if my CT scan from 2 days ago tells us nothing is growing large enough to be seen, and to get him on his way to college- on his adventure to further his survivor genes, much as our ancestors did. I hope and pray with all my being to see him graduate, and have more of our descendants this will be what keeps me going and surviving too.

Lisa Laws, age 51, Apex NC

Guest Post: Scholarship Essay from the Son of a Survivor

2010-02-17T22:03:00.003-06:00

By William Laws

When my family tells me about my predecessors and how they first arrived in America, it makes me wonder how they made it through the circumstances they chose. Today’s problems of pandemics, wars, and financial strife seem very manageable when one thinks of the problems that the first settlers of “The New World” faced.

From what I know about my ancestors, I am a mix of French and German settlers to New England on my father’s side. I think I can imagine how cold their lives must have been. Sickness was a common occurrence, and effective medicine was hard to come by. Yet these people withstood what everyone can assume to be very bad times, and the majority of this side of my family has not moved more than two hundred miles from where they entered the United States. I wonder if it was because they struggled, and had no choice but to stay.

On the southern end of the thirteen colonies, my mother’s English, Scottish, and Irish forebears are known to have come into Norfolk, Virginia and Wilmington, North Carolina. In fact, my mother tells me that the William Laws name was first seen in the ships’ logs of coastal Virginia during the 1600’s. While we do not have written records of the direct connection, we know the Laws name traveled to North Carolina very early on. There is a major interstate winding through Virginia numbered 81- that used to be called “The Great Road” over ten generations ago. My maternal German Protestant ancestors traveled in a wagon on that rutted road to Washington County, Virginia in 1789. Their descendants are still there today. Their strength to withstand disease, harsh winters, and other miseries in the rustic Blue Ridge Mountains of the 1790’s proves to me that I come from a long line of survivors.

All of my predecessors’ struggles were to better their own circumstances and their descendants’. I have benefited from their struggles. My life is not perfect, but for the most part, I am a very fortunate person. Although my parents haven’t lived together since I was an infant, I don’t feel disadvantaged because of it. Both of my parents have stable jobs and homes, and both of them love me very much. But last February, my mother received some shocking news that would change our lives forever.

I turned around and shut the front door. It was a rainy Wednesday night, and my father had just dropped me off at my mom’s house after my weekly scheduled visitation with him. When I saw my mother and stepfather sitting down in the living room, I could immediately sense that something was wrong. My mom’s mascara was a little smeared; it was obvious that she had cried a little while ago, but she had calmed down by the time I arrived. Ed, my stepdad, was sitting on the couch in apparent shock. It looked like they had been motionless for a while, just waiting for me to come through the door.

“Honey, sit down,” said Mom weakly. At this point, I started to scan my memory for things I had done wrong lately. I couldn’t think of anything, but that didn’t comfort me. “I have some bad news,” my mom continued after I sat down. “When I went to the doctor today…”

“Oh yeah, how’d that go?” I interjected nervously.

“Well, it’s hard to say,” stammered Mom. “But the doctor thinks that I have cancer.”

I was silent for a while after that; I realized why Ed hadn’t said anything since I had come home.

I finally mustered, “Where, what kind?”

“They haven’t found the main cancer site yet,” she responded. “But from the tests, it looks like I have stage IV cancer. But we’ve decided about some treatments, so there’s a good chance…” she trailed off, as if not wanting to say, “that I’ll live.”

I didn’t know what to say; I simply nodded, gave her a hug, and trudged upstairs to my room.

Thoughts were swirling through my head. How could my mother have cancer? She wasn’t even 50 years old yet. Even though cancer runs in my mom’s side of the family, we were all shocked when we found out it had hit my mother. She was the most health-conscious person in our family; she doesn’t smoke, and only drinks some wine or champagne once in a while. She was always the one telling me and my stepbrother to “eat our leafy greens”, since they have vitamins in them that prevent diseases. But even though my mom practiced a fit lifestyle, she contracted cancer. And it was probably just because both of her parents smoked.

That taught me a lot about fairness in life; someone can have a horrible circumstance occur in their life even if they do everything within their power to avoid it. One does not always control their own destiny; some things are just out of your own hands.

The next 15 months were a real struggle for our whole family. My mom, who was in the middle of graduate school, suddenly had to start chemotherapy. The effects of chemotherapy were draining. Many days she barely got out of bed, unable to gather enough energy to go downstairs. But she still managed to continue her work for graduate school online, something that amazes me to this day.

I gained a lot of respect for my mom while she was fighting cancer, and realized how much different life would be without her. I wouldn’t be able to live without her; she is such a big part of my life and I wouldn’t have accomplished a lot of the things I have done without her encouragement.

The ordeal also brought my stepdad, my stepbrother, and I closer together. Since Mom didn’t have the energy to help around the house most of the time, we had to increase our workload. We worked together to keep our home presentable, which can be hard for a few guys to do.

Thankfully, my mom has had several scans that are free of cancer since this spring, and is back working full-time. She went to Washington D.C. this past May to receive her Masters degree in Clinical Research Administration from George Washington University.

My mom’s fight against cancer taught me to be thankful for the people around me, especially my family. There is nothing more important to me than the well-being of my family. My ancestors probably felt the same way- but in most cases all they could do was hope for the best, and likely lose a family member. In current times, society enjoys more advantages that many people do not appreciate; but our ordeal has taught me to appreciate modern medicine. Even though we did not realize it that February night, our battle against cancer would end up bringing our family closer together instead of tearing it apart.

Logo vote results

2010-02-16T10:25:00.003-06:00

My favorite, the butterfly, was the overwhelming victor in the logo vote! I think those of us with cancer see the butterfly as symbolic of transformation, hope and eternity. One of the voters sent me this that I really liked:

Butterfly: metamorphosis and transformation. Scientific research has shown that the butterfly is the only living being capable of changing entirely its genetic structure during the process of transformation: the caterpillar's DNA is totally different from the butterfly's. Thus, it is the symbol of total transformation. Butterfly represents a need for change and greater freedom, and at the same time it represents courage: one requires courage to carry out the changes necessary in the process of growth.

So the butterfly it is!

Also, tomorrow or Thursday I will publish a guest post, the essay of a 17 year old whose mother was diagnosed with an abdominal cancer like ours at Stage IV. The essay is one written as part of his application process for a college scholarship, it is the James “Rhio” O’Connor Memorial Scholarship Essay contest. It is required that his essay be posted on a blog, and they asked that it be posted on my blog...I am honored. His mother will also post a response to his essay. Be sure to watch for it!

Thanks again for voting! And BTW, I filed my grad school application today...I'm both excited and nervous! Wish me luck!

And as a final addendum, I try to respond withing 24 hours to every email I receive from a cancer patient, friend, or family member of a cancer patient. I recently became aware that a patient never received my reply to her email. That bothered me a lot. So if you write me and don't hear back, please let me know!! Write me again! I will never not answer!

I need your input...please vote!

2010-02-11T14:25:00.005-06:00

I mentioned before that I had founded a non-profit organization. It is the Appendix Cancer Connection. It was a stretch for me to do that, totally out of my realm of experience and expertise. But I decided that was the right thing to do. I feel for those with breast cancer, but sometimes get jealous of all of the support they have, all of the funds raised to find a cure for their cancer. We with appendix cancer need a voice and support too!

I had to learn a lot to do that. I took a business course to learn about devolping a non-profit and writing business plans. I had to learn how to legally form a corporation (you have to be a corporation to apply for 501 (c)3 to be recognized as a public charity). I hired an attorney to help me with the Federal 501(c)3 application...which has been approved, our organization is now recognized as a charity by the Federal govenment! I needed a board of directors, and I recruited 5 people to be on the organization's board. We have board meetings now complete with agendas and minutes. I am looking for a web site designer and recently went to a grant writing workshop. I now communicate with my Secretary of State. Yet another brave new world.

My goal is for all of us with appendix cancer to have a voice, to have support, to have information available, to increase public awareness of our struggle and to raise funds for research that will one day result in a cure for this cancer. The money required for founding this organization has been contributed by my late mother, my mother-in-law, my brother-in-law and husband and I. All people who believe in my mission.

I recently hired a company (The Logo Company)to design a logo for our non-profit. They will also do business cards and stationary for the organization at a very reasonable price. They have sent me logo designs to choose from, and I want you to be a part of choosing a logo...this organization is not mine, it is for all patients and family members struggling with this disease. It is OUR organization. A logo will haelp people recognize and remember us.

I am asking for your opinion on three of the logo designs. I have a favorite, but I want to know YOUR favorite. Please look at the 3 links to these designs and tell me which you like best. Email me your preference at carolyn@appendix-cancer.com. And thanks in advance for your help! We are in this together!

Logo designs:

Butterfly

Friends

Sunshine

Both Sides Now

2010-02-08T12:39:00.005-06:00

I've recently been in contact with a woman who's very good friend was diagnosed with advanced appendix cancer, she's not sure if all of the cancer was removed during her surgery, and she was not able to receive HIPEC at the time of her surgery. She wants her friend to be proactive, to be eager to start chemo, to have an "I will beat this" attitude. She doesn't want her friend to "give up". But her friend has not been passionate about pursuing medical treatment or starting chemo. Why, she wonders? Why isn't her friend waging an all-out battle against her cancer? Why isn't she more aggressive in beginning chemotherapy? Why isn't beating cancer her priority?

In my heart, as a survivor of a terminal diagnosis, I can relate to her friend. I don't know what prognosis she was given. Maybe she is weighing the pros and cons of pursuing treatment. Maybe she's overwhelmed right now and needing to regroup. When I was diagnosed, every one sent me stories of those who had survived terminal diagnoses, who "beat" cancer, who won. They KNEW I would beat it; I just had to stay positive and fight. They didn't allow me any thoughts that I might not survive, though I was in the cancer community and surrounded by a multitude of patients who lost their battles in spite of the war they waged. While I wanted to fight and give myself the best odds, at the same time I also contemplated my husband's and children's future in case I didn't survive.

I knew my odds (15% chance of surviving 3 years), and though I planned on fighting and wanted to fight, I had to look at both sides. I needed to prepare to fight, but I also needed to prepare to die in case I lost my battle. The odds were against my "beating it", and I knew that. I had to work on coming to terms with both potential realities, surviving and succumbing....but no one wanted to know my thoughts about contemplating my own demise and preparing for that too. No one wanted to know about all of the books I read about death and dying, they weren't "positive". I had to pursue that in secret, but it was a potential reality important for me to contemplate and come to terms with. I needed to be ready for either outcome, surviving or not. Being prepared for either gave me a sense of control.

I know many appendix cancer patients who have been told further medical treatment will extend their lives but not cure them. So some choose not to aggressively pursue chemo and medical treatment...they prefer having less time, but quality time. It's a decision that needs to be respected. Those surrounding them don't understand that "giving up" mentality; I understand it fully, though. They were not "giving up" so much as they are giving to themselves what matters to them in the time they have left, taking control over what life they have left to live.

We live in a country and an era that pursues youth and wellness and longevity. We deny death vehemently; we don't think about it or talk about it. But death is a reality all of us will face eventually, though most in our society choose to not contemplate that promised destiny. A cancer diagnosis makes us confront our own mortality, though, and in many cases inspires us to create a back-up plan in case we don't have a good cancer outcome. We have to look at both sides of the coin. In a world where quantity matters and rules, we sometimes look for quality instead. It gives us peace to be prepared for whatever the future holds for us.

Medicines from Nature

2010-01-31T13:38:00.023-06:00

I know many who use natural therapies such as Chinese herbs and supplements for cancer treatment in preference to chemotherapy, as they prefer "natural" methods to chemotherapy. Some use these therapies instead of traditional western medicine (alternative therapies); some use them in conjunction with western medicine (complimentary therapies).

While I support the decisions of those who choose alternative and complimentary therapies 100%, I personally went the route of western medicine; surgery and chemotherapy. I personally wanted to use therapies that had been tested in clinical trials to show benefit. The interesting thing to me sometimes, though, is that half of the chemotherapies in use today were derived from natural sources. They in essence are herbal therapies that have been refined, purified and tested in clinical trials.

As a nurse, I know many life-saving western medicines currently prescribed are originally from natural sources; aspirin, morphine, coumadin, quinidine and lanoxin, along with many of our antibiotics, are "natural" medications. I was treated with a chemotherapy drug derived from the Chinese Happy Tree, Irinotecan, a component of FOLFORI. Several other chemotherapies, including Vincristine, Taxol, and Vinblastine were developed from plant sources. Memorial Sloan Kettering has done clinical trials testing Chinese herbs for potential use in cancer treatment. The spice curcumin is being tested in clinical trials at MD Anderson. Western medicine is pursuing plant-based “herbal” therapies. The National Cancer Institute has a Drug Discovery Program that began collecting plants for use in cancer treatment in North America in 1955 and in 1987 expanded that search to the world’s rain forests.

Rain forests have long been called "nature’s pharmacy", containing plants that for centuries have been used for medicinal purposes. Currently 25% of all Western pharmecueticals are derived from plant sources. Twenty-five percent of the active ingredients in today's cancer-fighting drugs come from organisms found only in the rain forest. The National Cancer Institute has identified 3000 plants found to be active against cancer, and 70% of these are found in the rain forests. Yet only one percent of rain forest plants have been tested for medicinal use. A study of rain forest plants in 1990 in Samoa found that 86% of the plants used by healers in the rain forests there had biological activity in humans. I truly believe a cure for cancer may one day come from a natural source, very possibly from a rain forest plant.

Rain forests contain plants that over many centuries have developed chemicals to protect them from diseases and parasites, chemicals that have the potential to protect us also. But we may lose the chance to find more plant-based treatments for cancer, even a potential cure. Rain forests, which covered 16% of the earth 20 years ago, now only cover 6% of the earth. They may be gone forever in 50 years if they are not preserved.

I've become kind of passionate about preserving nature...in addition to personally enjoying time in wilderness settings, I also believe in the potential of nature to provide us with treatments and potential cures for many of our diseases, including cancer.

I have recently learned of and support the work of the PEW Charitable Trust in conjunction with Conservation International, The Nature Conservancy, Wildlife Conservation Society and The World Wildlife Fund in forming an Alliance for Global Conservation. Their website has a page devoted to information about Medicines from Nature.

You can support their efforts by signing this letter to President Obama if you are a survivor who has been treated with a drug derived from a natural source or are a healthcare worker (I did as I am both). You can also follow this link to Tell Your Representatives Co-Sponsor the Global Conservation Act. It would just take a minute of your time and might make a huge difference for all of us.

Wondering....

2010-01-28T15:54:00.003-06:00

I took my first college exam yesterday, statistics. My goal is to get an A in the class...in part to prove to myself that maybe I haven't lost it? My overall GPA for my first four years of college was an A-. But I haven't been in school for 17 years...and a part of me wonders, can I still do it? And do I have chemobrain now? Will I still be "smart"? Especially if I pursue school at the graduate level, where classes will be more difficult than those I've taken in the past.

I wonder sometimes about "chemobrain". I haven't looked for studies to see if there is any evidence that it really exists, though I know while on chemo I was more scatter-brained and didn't seem to have as great a memory. But I don't know if it was the chemo or dealing with all of the emotions that go along with cancer diagnosis and treatment, dealing with my own potential demise. Our lives after diagnosis are in such an upheaval....I'm sure our minds are too. Dealing with cancer definitely distracts us, so I wonder if the distractions interfere with our normal intellect and thought processes while we are in treatment? Maybe it's not just the chemo?

And in the sense of moving towards the future after cancer in spite of a lingering sense of uncertainty, I learned of a tragedy today. A distant relative of mine lost her child today. The nine year old girl was playing board games with her brothers, and they asked her to go upstairs to get something in her room. She didn't come down right away, though they called and asked her to hurry up. When she still didn't come down, her siblings went upstairs to see what was taking her so long...and found her dead in her room. No one knows what happenened, they will do an autopsy tomorrow.

Again, none of us is promised tomorrow, life is uncertain with or without cancer. I would have assumed a healthy nine year old had an unlimited future before her, a certain one full of potential. But she didn't. I can't even fathom her mother's shock and grief, what it would be like to lose a child.

We need to move forward in spite of the uncertainty cancer brings to our life. Life is and will always be uncertain, but we can't let that uncertainty dictate our passions and goals.

A Student Again....Finally!

2010-01-21T22:51:00.002-06:00

I went to my first class last night and really liked it, really liked my professor. I loved being in a classroom again. The professor is kind of fun. He did a little speech about the fact that he had a very strict attendence policy and that you had to have a really good excuse to miss his class. Hospitalizations, famiy deaths and automobile accidents on the way to class were NOT good reasons to miss his class. After the silence that followed, he said a good reason to miss his class was free tickets to a baseball game, a chance to sleep in, a good party...something GOOD. He said he hoped we wouldn't have to deal with bad things and would only miss his class because a GOOD opportunity came along. I like him!

After class I went to my Toastmaster's meeting...I had to give a speech. I was supposed to give an inspirational speech. I decided to do a speech about Dr. Jimmie Holland...she inspires me. She has brought attention to the emotional aspects of a cancer diagnosis. She wrote a book I loved when I was newly diagnosed with cancer..."The Human side of Cancer: Living with Hope,Coping with Uncertainty". She founded the science of psycho-oncology. She made many oncologists aware of the emotional struggles we all face after a cancer diagnosis.

Dr. Holland made the cancer comunity aware of the fact that we were not just persons with a tumor who need medical care, but whole individuals who are traumatized emotionally, and not just physically, by the diagnosis. She is a hero of mine. The emotional consequences of cancer,in my view, far outweigh the physical effects of cancer and treatment. She's advocated for us all. She recognized that we are people, not just illneses, that there was so much more to us than our disease, that a cancer diagnosis affected our whole being, not just our health. She is 80 years old and still advocating for us. We are her life's purpose. She honors us, she honors our stuggle. I loved doing a speech about her.

Did I tell you I got to meet her? She is involved in the AACRs Scientist-ssurvivor Program I am a part of. So I got to meet and spend time with my hero at one of the AACR annual meetings. It was such a priviledge. Maybe I'll get to be like her and still make a difference when I'm 80.

CR Magazine did a great article about her I'll paste here: Caring for the Whole Person. Please try to find the time to read it!

School Days!

2010-01-20T09:30:00.004-06:00

I'm so excited, I start school today. I am taking pre-requisites required for admission to the advanced practice oncology nursing progam. I went last night to buy a notebook and pens...I've done that for my kids for years when they've started school. It was fun, and also strange, to do it for myself this time. I was lucky to get into the stats class, it was closed when I tried to register, but they over-rode that and got me in! I've already talked to the professor about some days I will have to miss class, and he's going to work with me to give me tests/assignments early when I can't be there.

I've been studying for the GRE exam (the equivelent of SATs or ACTs for a high school student entering college, but this a test for admission to grad school)for about a week now. I bought books and software to help me prep for that test.

I talked to the graduate program director at the college I want to attend today, she said in light of my high GPA from my previous degrees, they are wiaving the requirement for me to take that test. How cool is that! I don't have to relearn advanced mathematics! I'd been trying to remember how to do quadratic equations...

The school has said they may find a clinical rotation in Indiana for me also, so I wouldn't have to commute to Illinois for that (4 hour round trip). They also may let me take the masters classes in reverse order, so that I could take all of the oncology classes first and be able to sit for the oncology certification exam before graduation. They have been so kind and supportive (and I haven't even turned in my application yet!).

I also went yesterday to be fingerprinted and to have a background check so that I can apply for a nursing licence in Illinois. Mapquest is not always correct, I've learned. I spent a lot of time on the wrong roads. And it was strange being finger-printed....I felt that is supposed to happen when you've done something wrong? Now my fingerprints will be in the FBI database. I watch CSI a lot...I guess I better not participate in criminal activity from here on in, or they will know because of my fingerprint profile!

I'm excited now, though, about moving forward and dreaming. About planning for a future.

And I've noticed that doors seem to magically open sometimes....maybe when we are doing what we are meant to be doing? I truly believe there is a master plan.

Brave New World

2010-01-18T15:56:00.003-06:00

I have a confession to make. Since my cancer diagnosis, I have pretty much been living one day at a time, or at least CT scan to CT scan. I haven't contemplated a long-term future. I haven't contemplated retirement, I haven't even really committed to a job. I've worked PRN...as needed. I make my work schedule out week to week. I work per diem jobs. I've lived tentatively for eight years, with no real long-term commitments.

Well, I'm changing that. I want to go back to college to pursue a graduate degree. I love to go to school, I love learning,and I love the college environment. The graduate degree I've been coveting for a long time is the degree of an Oncology Clinical Nurse Specialist, an advanced practice nursing degree. That degree is not offered many places, but it is offered at a private college in Chicago, near where I live. And an oncologist I love and respect wants to advance our local large onclolgy practice, to make it integrative...and he has already talked to his superiors, he wants me to be a part of the new practice. I would be so much more qualified to help him with the advanced degree.

It would mean committing to more than two years of education, to planning a future that would utilize that degree and to investing a lot of money in tuition, as the school I want to attend is an expensive one.

It would mean committing to a long term goal, something I've not really done since my cancer diagnosis. I think it would be a good thing for me, in many ways.

I did a campus visit in Chicago with my kids who were on break from college over the holidays. My youngest bought me the school lanyard, coffee mug and bumper sticker at their bookstore....she said that's what I bought her when she first was accepted to her college (I reminded her I wasn't accepted yet!). Over the past few years I've done college visits with my daughters, so they thought it was fun to do a college visit for their mom. They want me to achieve dreams too, as they have. They belive in me, as I belive in them.

I was just admitted today to a public university close to my home and registered for a pre-requisite class required for the graduate degree. I'm a college student again after 17 years! I need three letters of recommendation from nurses with a master's degree or beyond to apply to the graduate program. Today I finally located and talked to three of my former nursing professors, who all remembered me after 17 years and who are thrilled to write my letters of recommendation. As it turns out, the three of them, after retiring have become best friends and see each other often. They were all people I admired greatly and who inspired me when I was in school. I also need to obtain an Illinois nursing license and to take GREs. Challenges...but welcome challenges. I so want to be challenged again.

Maybe after cancer (and after turning 50!) we need to push ourselves, challenge ourselves. We need to allow ourselves to dream dreams, to believe in a future.

I think of the patients I've know as a nurse, who've suddeny succumbed to a life-threatening disease or illness unexpectedly. I think of myself being very near the Twin Towers just a few days before they went down, just a few days before many whom I'm sure were healthy unexpectedly lost their lives. And I remember thinking then that none of us, with or withhout cancer, healthy or ill, is promised tomorrow. We with cancer are just more aware of our mortality. We are as vulnable as everyone else, only more aware of our vulnerability. We need to keep moving forward, in spite of cancer. We need to not let that awareness of vulnerability control our passions.

I feel I am in some sense reclaiming my life. Moving beyond cancer, not letting my diagnosis dictate my life and dreams. But I also recognize how lucky I am not to be dealing with a recurrence, to have been out of cancer treatment for so long. I know many are not as lucky as I have been. But hopefully furthering my education will help me to give more to those living in the cancer community.

The Cancer Community

2010-01-11T14:32:00.004-06:00

In a post I wrote about support groups for my Everyday Health blog, I received this comment from Gerrianne:

"I feel that it is absolutely necessary to be my own best advocate and the best place to learn how to do that is in a group of other well-educated patients and their caregivers. We know what life post diagnosis is like and we help each other in ways that no docs, nurses, clergy, well meaning friends and family possibly can. We laugh, we cry, we bitch and we push and pull each other! We mourn the losses, celebrate small and large victories and we educate ourselves and others. But most importantly-we embrace each other and our lives."

I think she described what I envision as the great potential of cancer support groups.

We are all part of communities of one sort or another. A church community, a work community, a family community, an educational community. I've had jobs where co-workers were like family to me, we supported and cared for each other for years. We all need community in some form. We all belong to groups of people who support us, even though we don't use the term "support group".

I've noticed from being in the nursing community for so long, that nurses connect in ways unique to our profession, our calling. We seem to find a sort instant camaraderie when we are together. My best friend of 30 years is a nurse, my husband is a nurse...we all seem woven from the same cloth.

We all need to feel connected to other people, we all need to belong. We all need to feel understood.

I think those of us in the cancer community, whether we label our involvement as a "support group" or not, have a lot to offer each other. As Gerrianne said, "We know what life post diagnosis is like and we help each other in ways that no docs, nurses, clergy, well meaning friends and family possibly can". We share so much.

We truly need each other as we travel the road cancer puts before us. We are best able to support each other, to understand our mutual journeys and to help educate each other. I know when I meet another cancer patient, I instantly feel a bond. We understand each other in ways no one else can. I've loved meeting other cancer patients and survivors in my work with the American Cancer Society, the Scientist-Survivor Program, in my oncologist's office, and even many of you I've "met" on-line.

I think even if we don't join "cancer support groups", it benefits us to reach out to others diagnosed with cancer. We have a lot to offer each other.

Purpose in Pain

2010-01-02T00:59:00.082-06:00

Maybe I'm going out on a limb here, but I guess I spend a lot of time thinking and contemplating and reading. Maybe because I live in the cancer community, a place where pain and heartache and struggle reign. I think about it a lot.

After I had survived longer than I was expected to, I became obsessed with purpose. If I had survived against all odds, I felt I must be here for a reason, and I was obsessed with learning why I had survived, what my purpose was here. I thought if I'd survived when I wasn't supposed to, it must be for a reason. I HAD to understand my life purpose, I had to justify my survival. I had to be worthy.

I read lots of books about purpose. One was "What Color is Your Parachute", written Richard N. Bolles, a former Episcopal clergyman. What intrigued me most about the book was a single chapter, which was later published in a single small book "How to Find Your Mission in Life". In that chapter and book, he contemplates that maybe before we were born, our eternal soul existed and gave permission for us to be on this earth and to deal with what we would suffer here, knowing that it was for a limited time only. What if we, from the other side, gave our permission to experience the events and pain we would suffer here, knowing it would serve an ultimate and greater purpose? Knowing that we had a mission and knowing that we would eventually come home to where things were right and just, where we would later be whole again.

That gave me a sort of peace. Maybe we are all interconnected and our trials in the end are for a greater good. One example...my daughter has a deaf cousin. She learned sign language to communicate with her. That same cousin had a very disabled brother who died at age 4 after suffering a life of disability..he was never able to communicate, eat, even breathe well. In the end she is pursuing a career in special education and works for a group home housing many disabled adults with severe autism. Her heart is for the handicapped. She has a gift for dealing with the severely disabled. She worked with the disabled at her high school, and taught sign language to some who were mute, giving them the first chance they'd ever had to communicate with others. Maybe dealing with two disabled cousins gave her the ability to profoundly affect the lives of many who are disabled. Maybe the disability of her two cousins will in the end help her help hundreds of diabled kids. So maybe from her cousin's pain there was a greater good.

I read once of a very educated and intelligent man who gave up his career and spent years working with the very disabled. Though they could not communicate with him, he said they taught him more than he had ever learned before...about appreciating health and wholeness, about unconditional love.

A young adult I consider my "adopted son" was profoundly affected by the accidental death of his father at a young age...but he has become gifted from that experience in the way he is able to support and relate to others.

Maybe in the end all of our suffering is for a greater good. Maybe kids who lose parents to cancer will in the end be able to help others in a way no one else can. The child of one patient I know who had appendix cancer in the end as a teen formed her own non-profit to raise money for cancer research.

Maybe the effect of our pain on just one other person will cause that person to positively influence hundreds of other. Maybe our pain is interconnected in a way that achieves a greater goal, even if we can't know it from our perspective here and now.

Maybe even small events in our lives cause a ripple effect that change the world. Maybe there is a bigger picture we don't understand..yet. But maybe we will one day

Clarification

2009-12-28T22:05:00.002-06:00

I probably need to clarify some of my thoughts related to my last post. I really don't believe cancer is "mind over matter". I don't think positive thoughts and doing everything right promises a cancer cure or good outcomes...I am all too aware of those who have a positive and strong "I'm going to beat this" attitude, who don't beat cancer. I know of people who have been healthy eaters, athletes, who do yoga, who have faith and who have been diagnosed with and who succumb to cancer. I know of many who pursue very healthy lifestyles after a cancer diagnosis, to no avail. Cancer is sometimes bigger than all of our resources.

I also know that based on new research that there are some who have a genetic predisposition to violent reactions to chemo. Going into chemo treatment with a positive attitude won't over-ride their predisposition to have violent reactions to the drugs. And many suffer surgical complications they have no control over. Many have more extensive surgeries than I did, so have a more prolonged recovery than mine.

I guess I was just thinking of patients I have seen over the years as a nurse, with and without cancer, who decide ahead of time that therapy will be difficult, recovery prolonged, who anticipate negative reactions to every new drug they are given, to every new treatment. And their beliefs are often realized. I see many who assume prior to surgery that they will feel badly for a long time after, and they do. And some who assume they will have a prolonged recovery from surgery do so in part because they assume an invalid mentality post-op. They assume they need to stay in bed feeling badly, and the staying in bed promotes a prolonged recovery as they heal more slowly when they decide to not move. And there are some who experience "anticipatory" nausea and vomiting prior to chemo....they actually feel nauseated and vomit prior to chemo treatments, as they have convinced themselves it is inevitable.

I had chemo every Tuesday, and had chemo with the same group of patients week after week. No one in my group had negative responses to chemo. Many went out to eat or went out shopping after chemo treatments. We laughed and talked and had fun during our hours of chemo. Those who had difficulties with chemo were in the minority.

I've seen many patients over the years who have done well after major surgery, because they were proactive and decided to do everything they could to recover rapidly. I've also seen many who recovered slowly and who had many complications related to the fact that they assumed they were supposed to feel badly and so acted accordingly.

One of the biggest things cancer takes from us is our sense of control. And we cannot control that we were diagnosed with cancer, we cannot control our final outcome of the diagnosis. But we can have some control, even still.

I feel expectations, at least in regards to therapy often do often influence outcomes (though a good attitude doesn't guarantee a good outcome). We have a chance to be in control, at least in some ways, of how we respond to therapy. We can be victims, or we can work to assume the best outcomes. We can decide not to assume bad reactions to chemo, but to go into it open-minded. We can decide pre-op that we will walk and move and do everything we can to enhance our recovery, even if it is painful. Part, but not all of it, is a mindset. A sense of determination, a willingness to fight that can only help us. It may not guarantee good outcomes, but it surely can't hurt.

Outcomes and Expectations

2009-12-26T14:06:00.000-06:00

While I don't believe "thinking positive" is vital to a good cancer outcome, I do believe that negative assumptions affect cancer treatment outcomes.

I know of many who assume prior to cancer therapy that their normal lives will be over while on chemo...they will feel ill, be nauseated, will vomit often, not be able to eat and will be fatigued while on chemo. And bald.

Many also assume their recovery from surgery will be extensive, they will be out of commission for months following surgical intervention. They assume they will have side effects from radiation therapy.

I wonder sometimes if those assumptions become a self-fulfilling prophecy?

I personally had a very major cancer surgery. Prior to surgery I was told I would be in ICU post-op and would be hospitalized for at least 12 days. But I didn't go to ICU post-op as I did well after surgery. I was discharged in 6 days, not 12. I walked 3 miles 8 days after my surgery. I was driving my car in 2 weeks and back to my normal life in three weeks.

I started chemotherapy with no pre-conceived notions of my life being altered, and it wasn't. I was nauseated only once during my 7 months of chemotherapy, ate well, gained weight and never vomited. I didn't lose my hair. I drove myself to and from chemo treatments and ran errands on my way home from chemo. I did athletic training while on chemo. Six months after I completed chemo I rode my bicycle 100 miles in one day (I trained for that event while on chemo). I lived a normal life...the few chemo side effects I had were cured with medication once I brought them to the attention of my oncologist. I felt a bit washed out on chemo days, but hey, I'd had days where I felt a bit washed out prior to chemo. They've come a long way with chemo, nowadays drugs are given prior to chemo treatments to prevent side-effects.

I had a friend with my same cancer who was in her 70s. She was also discharged from the hospital following her extensive surgery in a week. She was soon after surgery kayaking and hiking and doing the things she loved. My 79 year old aunt is experiencing a breast cancer recurrence, but is living a normal and full life while on chemo, following 39 uneventful radiation treatments.

I know of others who after the same surgery I had spend months recovering. Who don't resume their lives and interests for the better part of a year.

And I wonder sometimes if expectations play a part in outcomes. If we expect to be ill and disabled, maybe we will be. If we expect prolonged recovery, maybe it will become our reality. It's not so much that we need to think positive when we enter cancer treatment, maybe it's more that we go into it open-minded? Maybe our attitude in part determines whether we will be victims or victors?

Acknowledging the Negative

2009-12-24T00:31:00.007-06:00

I am a great fan of another cancer survivor's blog, The Pastor's Cancer Diary". It is written (well written!) by Rev. Carl Wilton, a man living in a "slow motion crisis". He has a documented lymphoma recurrence that it just there, being constantly monitored, but for now not getting any better or worse. He's in a prolonged period of watchful waiting. Living fully with the uncertainty cancer brings to our lives.

He recently did a great post I recommend you read, The Glad Game.

This is an excerpt from his post:

"We cancer survivors hear a lot about the importance of maintaining a positive attitude. In many ways, that advice is but a warmed-over version of Pollyanna’s Glad Game. The problem is, no real person can be as relentless in playing the game as the fictional Pollyanna. Feelings of sadness and dejection sometimes present themselves, and that’s OK. They come with the territory.

If we take the “think positive” advice too seriously, we can end up denying the existence of those negative thoughts – which are only natural, after all. Sure, maintaining a positive attitude is important, but that doesn’t mean we can never give ourselves permission to feel anger, or sadness, or frustration or any of the other negative emotions that come from this kind of protracted struggle."

He also in his post quoted a hero of mine, Dr. Jimmie Holland (who I got to have lunch with once!!). She is a psychiatrist who has written books about the emotional aspect of cancer survivorship and who deals with the normal emotions cancer patients feel. She founded the science of psycho-oncology.

I've struggled a lot with the sentiment that we with a cancer diagnosis are always expected to "think positive". I've wondered sometimes why those who experience great physical trauma, heart attacks etc. are not held to the same expectation to "think positive" as we with cancer are. I loved that my mom, when she was hospitalized and paralyzed and disabled was able to tell me how depressed she was. I told her she had every right to feel depressed; life had dealt her a terrible blow, she had lost a lot. In her life at the time, depression was justified. It was a normal reaction to her circumstance.

But people don't say that to cancer patients. Somehow for us "staying positive" is supposed to help us beat our disease. We aren't allowed to feel depressed or frustrated or discouraged at the negative changes cancer has brought into our lives. We are supposed to deny those normal negative feelings. But denying feelings is always bad, I think. We need to be able to feel what we feel. To be honest. We can't move forward until we process those negative feelings; the grief, the hurt, the fear.

We need to be allowed to be who we are, to feel what we feel. To have support when we can't always be "positive". A cancer diagnosis deals us a terrible blow, in so many ways. Yes, we feel negative emotions.

We can't be positive until we process the negative. We need to be able to feel all that we feel. We need to be able to feel hurt and pain and anger before we can move beyond to the "positive". Negative feeling are normal and justified. We can't be "positive" until we process the negative.

Control

2009-12-20T09:39:00.002-06:00

I saw my oncologist for my annual visit this week (and I know how lucky I am only to be seeing an oncologist yearly now...I remember my very frequent oncology visits for many years).

I have a kind of fun story about my oncologist...the oncologist I saw for the first 7 years retired and moved to California. I liked her a lot. Being a nurse and knowing physicians in the community, I've always chosen my own doctors, and they are always the best. The oncology practice called me after my oncologist retired and told me they had chosen a new oncologist for me. I took offense to that, I told them I always choose my own physicians, I'd do some research and choose my new oncologist, thank you. The office staff told me the oncologist they'd chosen for me was a new one, they really liked him, and asked me to just give him a chance. I reluctantly said okay, I'd see him once.

Well, I fell in love with him immediately (in the medical sense)! We truly hit it off and the first time I saw him we talked for an hour and a half about new cancer research studies, integrative medicine, cancer genomics...all before he got around to examining me. I had been reading a book about integrative medicine that had just been published, he had been reading the same book. When I told him initially I had been evaluated by a surgical oncologist at a university hospital in Chicago who'd told me I had no hope and was untreatable, he immediately knew who the physician was before I'd said the name, and had had issues with that surgeon in the past. I left the office smiling and accepting the "I told you so's" from the staff after that first visit.

We again had a lot to talk about this latest visit. He is hoping to revamp the large oncology practice to make it more integrative. To have massage therapy, nutritionists, acupuncture therapy, exercise programs and a new building with a garden and a less clinical atmosphere available to patients. I think that is a wonderful dream. He said when that happens he wants me to be part of it, I would truly love that.

We got to talking about the emotional needs of cancer patients. We both talked about the depression we see in cancer patients after they finish therapy and are in cancer's "waiting room" without the chemo/radiation safety net. I had talked about the fact that in my experience in the cancer community everyone wants support from other cancer patients, but no one wants to join support groups. They have a bad reputation, no one wants to be around those who are "weak" and struggling. We talked about the need for there to be empowering support groups. In the past he had one called "Strategies for Success" that focused on maintaining optimum physical and emotional health, focusing on things one could do to help control cancer and prevent recurrence, ways to gain and maintain a sense of control after cancer. I think that is the kind of support we really need.

I think regaining control over our lives is crucial. I see so many cancer patients who pursue drastic dietary changes (only raw fruits and vegetables), who grab at anything that might give them a sense of control over cancer...meditation, visualization, vitamins and herbals, psychoanalysis to discover unresolved hurts that might have cause their cancer etc. etc. I tried some of that initially (visualization and meditation) but never stuck with it. I didn't change my diet (I still do McDonald's and fast food sometimes and don't eat enough fresh fruits and vegetables), but always wondered if I should. I think I, like all cancer patients, wanted to feel like I was still fighting, that I had some way to control my future and my outcome, that I still had tools. I wanted to feel empowered again. I wanted to own my life and my future again.

It would be great for cancer patients to be part of a program that promoted education into tried and true methods to reduce chances of cancer recurrence, that gave cancer patients a sense of control, that made them feel proactive once they completed treatment.

Updates

2009-12-13T19:43:00.001-06:00

For those of you interested, I was asked to blog weekly for Everyday Health, I've been doing that for a couple of months now, the link is Against All Odds: Thoughts of an Appendix Cancer Survivor . So if your eyes aren't worn out reading this blog, I now have two! I was honored in that they featured one of my blog posts in their Woman's Health Newsletter delivered to a million people last week. I love to write, so it has been fun to be asked to write more!

I have recently been talking to my mom-in-law about my mother's death, we have always talked a lot, we are usually on the phone for at least an hour every time we talk. We mutually agreed several years ago to drop the "in-law" designation, she's my mom and I'm her daughter. We've been pretty close for 22 years now. She is probably the most giving person I know. She was very open in talking with my kids about sex and drugs and alcohol as they became teens, she was also their caretaker when I was hospitalized for my cytoreduction surgery and for all of the trips I made before and after to NYC. My kids have always thought she was very "cool" for a grandma, they can talk to her about boyfriends and just about anything. She had all of her grandkids over to her house for sleepovers several times when they were younger, she played games with them and made pizzas with them until the wee hours of the morning. When her brother died and she received an inheritance from him, she spent it all taking her kids and grandkids to Disney World...I missed the trip as I was receiving peritoneal chemo and had just had my surgery several weeks before. I didn't want to miss any chemo then. She is in her 70s but still loves amusement parks, still goes on all of the rides. She regularly drives the Chicago expressways I'm afraid to travel.

She sent me a card sympathy card that I really liked, along with a heartfelt note. A part of it I really liked said "If a tiny baby could think, it would be afraid of birth. To leave the only world it had known would seem a kind of death. But immediately after birth the child would find itself in loving arms and cared for every moment. Surely the baby would say "I was foolish to doubt God's plan for me. This is a beautiful life".

I'd heard that sentiment before, but I loved really thinking about it now, especially since death and the dying are a big part of my world, both as a nurse and member of the cancer community, and especially since my mom has passed. We went to her memorial service yesterday. If we were born into this life so much different and better than a dark womb, imagine what heaven must be like in comparison! I love thinking of my mother's birth into that world!

I read a sci-fi book long ago. In it a space ship sent several expeditions with multiple people on board to a planet they had wanted to explore. No ship ever returned, it was thought all aboard the ships had perished. It turned out, though, that all of the passengers had made it to the planet. The planet was beautiful, with awesome colors they had never seen before, beautiful landscapes and everything they had ever needed or wanted. All who went to that planet had loved it so much they had chosen never to return. I've always thought of that story when I lose a patient. Maybe where we go after death is a place like that, a place we never want to leave.

Transitions

2009-12-07T06:14:00.001-06:00

I think there are various transition periods in all of our lives. I think the first is in grade school, third grade (okay, maybe preschool if our kids go there). Suddenly education gets serious and you have to learn more complex math and cursive writing...it's not all about puppy stories during library time and arts and crafts and learning the alphabet anymore. My youngest had a tough transition during third grade, she wanted to quit school then and I talked her out of it. She did finally graduate from high school!

Then there's the transition to junior high school and the freshman year in high school. I think sophomore year is another transition period...my kids wanted to be more independent and their own people separate from me then. They didn't want me to always chaperon school events anymore or to have all of the social activities with their friends only at my house. They needed to establish themselves separate from me and from our family, they needed to be their own people. I understood that and told them I would never chaperon school or social activities again unless they specifically asked me to (I didn't get asked often after sophomore year). Prior to that I point I had been involved in all of their school and social activities. They spent more time at friend's houses and more overnights away from home without my intervention and presence. They needed to experience other family dynamics than our own.

Then of course there is the transition to college life and semi-independence, life away from parents with decisions they are accountable for and responsible for without parental input...a normal part of growing to be independent adults.

Then, for those that marry, there is the transition to independent married life. And later, maybe, the transition to raising children and being a parent.

But even after all of that, there are still transitions. Even without and in spite of a cancer diagnosis (which is a major life transition of it's own), there are new transitions.

I am at a point of transition now...and I know I am lucky to have survived cancer long enough to have experienced this current transition.

This year has been a year of changes for me. My kids are both away at school, so I am officially an empty-nester...lots of pros as well as cons in that situation. I also turned 50 recently, so am dealing with the fact that I don't have an unlimited number of years let to explore endless possibilities. I have an expiration date, even without cancer looming in my life at the moment. I also lost my mom and officially became an orphan, a normal transition for most of us at the middle age part of our life.

I think many of us at middle-age experience these multiple transitions. Mine have been within a matter of months, maybe for others the transition is more spread out. Unfortunately hours at my very lucrative job recently dried up too, so for the moment I am unemployed and doing a job search. I guess that was good in that it allowed me to be able to visit my mom downstate during two of her recent hospitalizations and to be home with my kids for Thanksgiving break and now to have finished the Christmas shopping.

In some ways I am kind of depressed right now with all of the changes life has recently presented me, but in another way, I am very hopeful and expectant. Transitions in life always herald a new beginning, a revelation, a new start. Transitions herald growth.

I don't know where I will go from here, but I am hopeful. Expectant. A new beginning is waiting, and I am ready to dive into that new beginning.

Life wouldn't be life, wouldn't be growth, if it weren't for the transitions.

Home

2009-12-03T20:44:00.008-06:00

My mom passed a few days ago, and I was grateful for that. I didn't have a need to travel to be at her bedside as she passed, probably because if I was in that state I personally would wait to leave until I was secure in the fact that my kids were in their own homes with the people who loved and supported them before I would be able to let go. Most of the dying I and other health care workers have been around have waited to leave until family members went home to change clothes or get a few hours of sleep. They'd already said their goodbyes and said what they needed to say. The dying person used their time alone to finally make peace with their lives here and to leave without traumatizing anyone. I will ask my kids to do the same if I am ever in that state. I don't want them to ever do a "death vigil" for me.

For me I will need to be alone with my God when I finally let go. And in reality, we all come into this world and leave alone, those are personal journeys we make. We can only make them alone.

I am very close to my mother-in-law, and when she was critically ill and when we were not sure she would survive, we took turns visiting her during the day. We made sure one of us children were there each day when she was hospitalized, but we went home at night. She told me she felt she was sitting in God's lap, that she never felt alone or afraid. That made me feel so good. So reassured. What can be better than sitting in God's lap? Being with the all-powerful was better for her than her being with us.

I felt I said what I needed to say to my mom when she was hospitalized the last time. I said goodbye and told her I loved her when she was awake and could see me. I had things I would have liked to have asked her then, to have bridged the gap in what we had (and hadn't) communicated to that point, but we didn't, we didn't have that alone time. But I think we will in Heaven. We were kind of distant in this lifetime, but I think we will be close in Heaven. I will know her better there. We will be the confidants in Heaven that we weren't in this lifetime, I think.

And I feel I communicated with her from a distance when she was in her "in between" state. I feel that geographical boundaries don't apply at that time. I played for her "In the Arms of the Angels" on my piano, though she's never heard me play the piano. I learned to play long after I left my childhood home at age age 17. We communicated more from a distance than I think than I would have communicated with her in person when she was in that dying state. To me that meant more than being physically present at her deathbed.

I have no regrets.

More Waiting

2009-11-28T00:47:00.011-06:00

In the spirit of "Waiting Room", my family and I have been in one lately. My mom had a stroke a few weeks ago, followed by several more strokes which left her very disabled. She was hospitalized twice. She yesterday had another massive stroke and is in the hospital again. She is not conscious or expected to survive.

I traveled to see her the last two times she was hospitalized recently. I knew she was at very high risk for more strokes, and I knew the last time I saw her during her second recent hospitalization that it was probably the last time I would see her alive...so I made sure to tell her I loved her and goodbye then.

I feel sad for what she has suffered, that she had become disabled and
intermittently confused related to her stokes. She had also become very depressed as a result of her recent traumas, and I know personally that the emotional struggles are the worst part of any physical illness. But as she is in the last waiting room of her life, I really do not grieve for her, or for myself. I am sure some would see me as callous. But I know when she leaves this world she will finally be at her real home, and will be whole and happy and will have many to greet her. She will never hurt or struggle again. I would rather see her there than enduring months, maybe years, rehabilitating from her stokes in a nursing home, away from the home she loved and the things she loved to do. I will miss her, but only for awhile, it's a temporary separation.

Being in the cancer community for so long, I have seen very many lose their battles. Many who were young and still raising children, many who had careers they loved and goals they wanted to achieve in the remaining decades they thought they would have. I was recently in contact with a family who lost their 23 year old son to a cancer similar to ours. I've communicated with a 19 year old appendix cancer patient. I worked once with a family who had lost two children both in their early twenties to two different types of cancer, brain cancer and lymphoma over just a two year period. A five year old at our church died of brain cancer in spite of overwhelming prayer support.

I had trouble dealing with all of that for a long time, so read many books about heaven and the life after this one. I also worked for a hospice as a volunteer for many month in trying to come to terms with it. I talked to many patients about their feelings about their impending death. Their fears, their hopes, their struggles. Patients who were relieved to finally have someone they could talk to about their impending death.

As a nurse, I've held the hands of many who were actively dying as they have passed from this life into the next, some who I think waited for family members to leave as they didn't want to put their loved ones through the trauma of witnessing their death. I've let patients who were barely living know that they had permission to leave, to move on to their next life, to stop suffering and lingering in the dying state...that it was okay, they could go home. I've also asked families to give their dying loved ones that permission. I've supported families who have chosen withhold food and hydration that would only prolong death and not life in a person who was at the end of their journey. So I am very familiar with end-of-life issues.

Once when I was waiting in the "CT scan waiting room" wondering if I had an impending death sentence, I met a woman, now 70, who in her 20s had a near death experience when she was very ill. She told me in detail about the heaven she went to during that experience. She said when she woke up in a hospital room later, she cried for three days because she so wanted to go back, she preferred the heaven she had experienced to living in this world, even though she was a young mother with small children then. Now at 70 she still longs to go back; she's been waiting for decades, but decided she must have work to do here, that she has been in this life's waiting room and not where she feels she really belongs for a reason. She told me not to be nervous, I had nothing to fear even if my CT results were not good.

In the end I developed a profound belief in heaven. A surety that life doesn't end here, that this life is only a short and temporary one in comparison to the eternity we will one day live in. Death isn't an end, it is a transition. It's a transition all of us will one day make. I personally, though I believe in heaven and a life after this one, still fear the unknown of that transition. But I now think it will be like many other transitions in my life that I was fearful of that turned out in the end to be enlightening and empowering. Transitions I'm so glad I made.

Interesting thing,the five year old in my church who died of brain cancer....he'd become physically but not mentally disabled. When he was in a wheelchair, he one day told his mom "Look over there, Tyler is back!!". Tyler was a dog they had put to sleep six months earlier. He then had a very animated conversation with someone no one else could see, and he smiled during that conversation. Shortly after he lost consciousness; he died a few days later. His transition. Many in hospice had similar experiences, many saw people they knew coming to take them home near the end.

For those who are at the crossroad of this transition, I can recommend several of the books I've read during my sojourn:

In Light of Eternity, by Randy Alcorn
Crossing the Threshold of Eternity: What the Dying Can Teach the Living, by Robert Wise
Heaven...Your Real Home, by Joanie Erickson Tada (who has been unable to move her arms or legs for four decades after a swimming accident as a teenager)
On Life After Death, by Elizabeth Kubler-Ross (who spent decades working with those who were dying)
Heaven and the Afterlife by James Garlow
The Shack, by William Young
When There is No Miracle, by Robert Wise

The Waiting Room

2009-11-16T07:25:00.007-06:00

At church yesterday the sermon topic was "the waiting room" and how difficult it is for us to wait, and how often God doesn't answer our prayers and requests as quickly as we would like. Or how sometimes he doesn't seem to be answering them at all. How sometimes, as in Abraham and Sarah's story, we lose patience and take things into our own hands in the absence of an answer. We struggle with our faith, as they did.

Cancer can be the ultimate waiting room. We wait for a diagnosis and then to learn more about our diagnosis. We wait for test results. Then we are in the ultimate waiting room after treatment, waiting to find out if our cancer will return and if we will ultimately survive our cancer. We wait for years wondering if we are safe, if we have beaten cancer. I know some who have had recurrences at 5, 6, 8 and even 10 years out from their original diagnosis, so feeling "safe" even as time passes is difficult. We are in the cancer "waiting room" for a long time. It's hard to be in the waiting room, it's painful.

The point was also made in the sermon, that in our society we want immediate answers. We are the fast food generation, we know what we want and expect it immediately. And God doesn't seem to work that way. We know many who are not healed and who lose their battles in spite of overwhelming prayer support. The point was made in the sermon that maybe while we want the transaction (I pray for healing and should get healing in return), maybe it is actually the transformation that occurs in others and in ourselves while we are waiting that is key. That there is a purpose to the waiting room. Even for those who lose their battles.

I truly believe that those who lose their battles are finally healthy and free and without pain, and that they will be whole forever. They are forever out of the cancer waiting room. And I truly believe that though we cannot see it from our immediate perspective, there are positive effects from our struggle in those who surround us and survive us. Maybe it's not about us, maybe there is a bigger picture we can't see from here.

I still always think of Abraham Lincoln. I read his biography once...he lost his mother when he was a young boy and had a very distant relationship with his father. Both of his siblings died young. He lost his first romantic love to typhoid fever. He lost 3 of his 4 children at young ages, only one of his children lived to adulthood. I can't help but think that all of the pain he endured, that his many, many hours in life's "waiting room" somehow molded his character to help him achieve the great things he did for so many people and for our nation. I have a kind of hobby, I love to read biography's of those who achieve greatness; many have suffered extraordinary pain and have spent much time in life's waiting room.

I truly believe there is a bigger purpose we can't see from here, but that we will one day understand. One day we will understand the purpose of pain in this very short life of ours. I love the analogy of a tapestry. From the back it is loose and disorganized threads that form no picture, but when viewed from the front it is a beautiful work of art, and the contrast of the dark threads are what makes the art beautiful.

I look forward to one day seeing the front side of the tapestry of this life.

Half a century

2009-11-07T23:25:00.006-06:00

I turned 50 today. It's a milestone...half a century old, 25 years past my favorite age, 25. I loved being 25 as I was educated, had a good job, was independent and self-supporting, didn't feel vulnerable, and still felt I had lots of time to change careers, dream new dreams, embark on new adventures, pursue new relationships. I knew who I was by then and had learned from my mistakes. I was physically healthy and felt there was nothing I couldn't do.

Turning fifty feels like there is less time to dream dreams and embark on new adventures, I have to choose more wisely now. I take less for granted. I am more spiritual. I appreciate more. I choose goals and relationships more carefully. I no longer feel I can have everything, so I choose more carefully what I want. I am more careful as to how I spend my time and who I spend my time with.

I had a 30 crisis, but I don't think I'll have a 50 crisis. I am too grateful to have reached this milestone. In the cancer world I know many who dream of being able to reach the half century mark, who dream of being able to raise their kids to adulthood, to realize dreams. One 23 year old lost his battle with colon cancer recently...diagnosed at 21 he spent the last two years of his life ferociously battling the disease. He had so many dreams he will not realize. Another friend recently died of my same cancer...she was diagnosed when she was 36 and fought a very long and hard battle with signet ring appendiceal cancer for the last four years of her life. She didn't live to see her children become adults, they are young teens. She didn't get to be 50; she'd just turned 40 when she lost her battle. She would have loved to have celebrated the 50 year landmark.

So I feel only gratitude at turning 50. I've lived half a centuy; I have a good marriage of 22 years, I have been unconditionally loved and supported by my husband for over two decades. I was able to have children and to raise them to adulthood. I was able to have a best friend and confidant for 30 years. I was able to do meaningful things, I hope, with my life for 50 years.

I am blessed to be 50....no crisis for me. But I do feel a need to make my time here count. To be worthy of having lived for 50 years. I feel humble and grateful.

Test Stress!

2009-10-29T21:57:00.007-05:00

I have a friend who recently had a needle biopsy for a lung mass that might be cancer. She is waiting for pathology results. They told her she'd have the results in 5-7 days. She called the office over a week later, no results yet. She spoke of a PA's voice that went from chipper to kind of "depressed" on the phone when she'd called the office and asked for her test results. What did that mean?

It made me think of how closely we watch facial expressions and listen for changes in tone of anyone involved in our tests...the person performing our tests, the nurses in our physician's office, our physician as he or she enters the room. Though we are thinking a change in expression from happy to depressed is an indication of something bad about our test result, it could be a voice or facial expression changes because someone just remembered they'd forgotten to pay a bill, take out the garbage or any number of things. But we don't know. Maybe the PA on the phone with my friend had just realized he'd lost his pen as he was trying to write down her information.

Sometimes I've even thought that the nurse in the office talking to me in a cheerful (but distracted) tone might just be doing that as a cover, they know my bad test results but don't want to let on, they want the doctor to be the one to tell me.

We are hyper-vigilant in all of our observations. We read into every posture, every facial expression, every vocal inflection. I've felt before, in waiting for test results, that I could relate to criminal defendants before a judge awaiting sentencing. Will they be paroled (good test result, but we'll test you again later to see if you pass), hard time (more surgery and chemotherapy) or a death sentence? It's kind of the same for us. Awaiting our fate, our lives in the balance.

I remember having so many thoughts going through my head when I'd had a CT done and was waiting for results. Every time the phone rang I was afraid it was a doctor calling with bad news. They wouldn't call with good news, or would they? And if they didn't call, was it because they wanted to tell me the bad news in person when I had my appointment and not on the phone? Once I had a hang-up message on my answering machine a few days after a CT. Was it my doctor? Did she not want to leave the bad news on an answering machine and so hung up without leaving a message?

My husband is a nurse who works at the hospital where I have my CTs done, so instead of waiting for results, I finally started asking him to access my results on his computer at work and to let me know what they were as soon as he got them. He always called me as soon as he got to work with my results. The last time he was supposed to call me with my results, he never called. I spent 8 hours sure it was because the results were bad and he would tell me when he got home as he didn't want to tell me on the phone (turned out he got very busy when he got to work and forgot to pull them up, they were fine).

I've had 13 CTs so far and countless tumor marker tests. The stress of waiting for results is horrible. No one who hasn't had a cancer diagnosis knows what we go through.

This podcast from CR Magazine has some great ideas for dealing with the stress of testing: Beating Test Stress

I loved one of the examples in the podcast...a patient walks into the office for test results and the doctor sees her in the waiting room and says "Your tests are fine!". The next time the patient goes to the office for test results, the doctor says nothing to her in the waiting room. Is it because the news is bad? We think that way.

The advice in the podcast is very good, we should be very clear to our physicians...please call whether the news is good or bad. Or don't call at all, I want my results at the office when I am there for my appointment. Being specific about what we need can give us some control at a time we feel our lives are out of control. It's another way we can advocate for ourselves.

Attitude!

2009-10-27T21:17:00.004-05:00

I hear a lot about positive mental attitude and the fight against cancer. When I was diagnosed, I did have an attitude, but it wasn't necessarily positive. I knew my prognosis was poor, and I didn't know if I would survive. While I made plans for treatment in hopes of staying alive, I also contemplated dying and dealt with the realization I might lose my battle. The believer I was in statistics (I'd been educated in medical research), I realized I was up against tough, almost insurmountable odds. I often felt depressed, anxious, and afraid, though I didn't share those feelings with those around me who felt I needed a positive mental attitude to survive. I acted positive around them to make them feel more comfortable.

I did have an attitude, though. One of anger towards the beast cancer was in my life. One of determination to do anything I could to not let cancer control me and defeat me. I was poised to fight with all I had, to not go down without giving it everything I could. I was (and am) a control freak. I refused to let cancer control my life. I'd faced other beasts in my life, and I'd learned to fight for myself. Cancer was just a bigger beast.

That attitude served me well. It made me read all of the available research about signet ring appendix cancer (including the awful stats). It made me search for the best weapons to fight my disease in terms of specialists, surgeries and chemo. It made me bold enough to reject two respected physician's treatment recommendations and to travel across the country for treatment instead.

It made me bold enough to stay out of bed and walk halls incessantly beginning 24 hours after my surgery, though I couldn't even stand up straight. I love to play piano, and I wouldn't let cancer stop me from doing what I loved....I played the piano in the hospital lounge days after my surgery with IVs in my arms. I was driving my car and doing normal things two weeks after my surgery, independently. I wouldn't take narcotic pain medication that would slow me down; I instead took anti-inflammatory medication, NSAIDS.

My attitude made me refuse to have my life controlled by chemo treatments...I drove myself to and from treatments, went grocery shopping on the way home from chemo and continued to do athletic training while on chemotherapy (new studies show better tolerance of chemotherapy for those who work out regularly). I wasn't going to let the chemo dictated by my cancer control my life. If I had any chemo side effects, I demanded my oncologist find a way to control them, and she did.

In the end, I was discharged from my surgery in 6 days instead of the expected 14. I suffered no surgical complications. I suffered few chemo side effects, and the ones I did have were corrected early on with medication. I lived a normal life on chemo. I made a point of doing the things I liked to do and being independent during treatment. My blood counts didn't drop, I was never nauseated, I ate well and gained weight while on chemo.

After treatment, while I was living in cancer's "limbo", a tough place emotionally, I sought help. I read books on coping with fear, I joined a support group for a bit, I volunteered at a hospice to become comfortable with the notion of dying. I also did a lot of volunteer work...soup kitchens, nursing homes, delivering Meals on Wheels to the elderly and handicapped. In part my volunteer work reminded me of how fortunate I was...I wasn't hungry, I had a home and could walk without the aid of a walker. It helped me to remember to appreciate that, helped me to look beyond myself and my situation.

I feel badly sometimes when I talk to patients who assume their life will be consumed by surgical recovery for many months. Who assume chemotherapy and its side effects will dictate and be a detriment to their lives. Who surrender to the cancer diagnosis.

I don't know if that determined and angry attitude played a part in my survival, but I think it at least helped me through the rough parts of treatment and the emotional limbo beyond. I think in the end it helped my outcomes from surgery, chemo and cancer limbo to be manageable. Maybe it's the reason I recovered so rapidly from surgery, suffered so few chemo side effects, have remained cancer-free.

And in the end I beat the beast. Cancer lost its battle for my life. I don't credit a positive attitude, but I credit an angry and determined attitude. The determination to stand up to and challenge the beast that is cancer.

My advice to those diagnosed is to not surrender, but to fight. A cancer diagnosis knocks us down, but we can't let it keep us down.

Thank You CR Magazine!

2009-10-13T21:31:00.005-05:00

I am deeply grateful to CR Magazine, a publication of the American Association for Cancer Research, for an article just released in their 2009 fall edition, Fairest of All, about Audrey Hepburn's struggle with appendiceal cancer. Audrey Hepburn lost her battle with the disease in 1993.

The article honored Audrey Hepburn's life, but also did so much to promote awareness of appendiceal cancer and the newer treatments available. I was honored to be interviewed for the article a few months ago; a bit of my story is included.

Appendiceal cancer is an orphan disease, many of us newly diagnosed learn for the first time that the disease even exists, that an appendix can become cancerous. Most physicians have seen few if any cases in their lifetime. Those of us who seek treatment from a specialist often have to travel great distances.

Our disease is rare, so receives little media attention and few research dollars. Just this week I was asked if there is an appendix cancer awareness month...to my knowledge there is not. But there should be.

The CR Magazine article is free, it is available on-line even without a subscription to the magazine. The article has also been posted on the American Association for Cancer Research's home page "In the Spotlight".

I hope the article is widely read. Again, I am very grateful to CR Magazine for drawing attention to our battle and for promoting awareness about our disease. They did us a great service.