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 23, 2010

Website blogs

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?

Tuesday, December 21, 2010

Just fun stories!

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!!

Saturday, December 18, 2010

Email

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!

Monday, December 13, 2010

CIGNA Covers HIPEC!

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! :).

Sunday, December 5, 2010

Web Site Update

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!

Saturday, December 4, 2010

Brave New World!

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.

Tuesday, November 30, 2010

Getting Ready For Surgery

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!

Sunday, November 14, 2010

An Educational Post

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.

Monday, November 1, 2010

I'm being arrested!

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

Thursday, October 28, 2010

September 11th

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.

Sunday, October 24, 2010

What Helped and What Didn't?

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!

Tuesday, October 12, 2010

Cancer Disparities

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.

Monday, September 27, 2010

Leaving again!

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.

Tuesday, September 21, 2010

Heat it to Beat It Update!

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.

Sunday, September 19, 2010

Heat it to Beat It!



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!

Saturday, September 18, 2010

Baltimore!

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!

Monday, September 13, 2010

Something great!

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.)"

Thursday, September 9, 2010

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

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

Monday, September 6, 2010

What questions to ask when you are newly diagnosed?

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!

Thursday, September 2, 2010

Cancer Genomics

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!

Wednesday, September 1, 2010

Thinking.....

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".

Thursday, August 26, 2010

How Cool is That!!!!

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!

Saturday, August 21, 2010

Scientist-Survivor Program

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.

Friday, August 20, 2010

Stand Up to Cancer!

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?

Monday, August 16, 2010

Offending web site is down!

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!!!

Sunday, August 15, 2010

This is kinda fun now.....

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!

Saturday, August 14, 2010

Even more interesting.....

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! :-)

Friday, August 13, 2010

Interesting.....

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.

Wednesday, August 11, 2010

Heat It To Beat It!

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!

Tuesday, August 10, 2010

After Cancer

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!!

Thursday, July 29, 2010

Back again!

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!!

Friday, July 9, 2010

More Help

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!

Tuesday, June 29, 2010

Advocating for Yourself

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.

Sunday, June 13, 2010

Two good things!!

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: "

Sunday, May 30, 2010

Emotions, Stress and Disease

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!

Friday, May 14, 2010

Back again!

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.

Friday, April 23, 2010

Back Home!

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!