My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, December 22, 2011

Back Again!

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!

Friday, October 21, 2011

Heat it to Beat It

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!

Tuesday, September 20, 2011

Heat it to Beat It 2011!!!

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!



Saturday, September 17, 2011

In Baltimore!!

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). 

Thursday, September 8, 2011

Sept. 11, 2011

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....

Saturday, September 3, 2011

My Apple Tree

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....







Monday, August 29, 2011

Our kids...

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.

Thursday, August 18, 2011

Can you please help us with PROGRESS?

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!!!





Thursday, July 28, 2011

Two Miracles in One Family???!!

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.

Tuesday, July 19, 2011

Heat it to Beat It 2011!!!

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!

Tuesday, July 5, 2011

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.

Saturday, June 25, 2011

Did I tell you this story?

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!

Sunday, June 19, 2011

Ten years post diagnosis....

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!

Sunday, May 22, 2011

Back Home

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!

Saturday, May 14, 2011

Vacation!

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???

Wednesday, April 27, 2011

A few things!

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.

Tuesday, April 5, 2011

AACR Annual Meeting

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!

Wednesday, March 30, 2011

Press Conference!

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!

Sunday, March 27, 2011

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

Friday, March 25, 2011

Update!

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.

Wednesday, March 2, 2011

Podcasts: The Human Side of Cancer

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!

Thursday, February 3, 2011

Palliative Care

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:

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.

Saturday, January 15, 2011

Article

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!!!

Friday, January 14, 2011

Newspaper Article!!

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!!

Saturday, January 8, 2011

Facebook

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!