I just came back from Baltimore Sunday night, I attended Heat It To Beat It, the annual fundraising walk of Dr. Sardi and Mercy Hospital. The walk raised funds for research into cancers that can be treated with HIPEC: appendix, ovarian and colon cancers. Cancers that spread into the abdominal cavity. Most represented at the walk is appendix cancer. Next year is their 10th anniversary. I’ve so far been to 6 out of the last 9 walks representing the Appendix Cancer Connection, my organization, there.
I often speak to appendix cancer patients who ask me if I know of long term survivors other than myself. They feel badly they haven’t been able to talk to anyone who has been through what they have.
I suggest you go to Heat it to Beat It if you can next year. I was there 10 minutes this year and met nine and ten year appendix cancer survivors. Below is a picture taken of appendix cancer survivors, there are many. And just ask anyone with a red survivor T-shirt to talk to you, and they will! It’s a support group too!
There is HOPE there! Survivors!
For some reason I recently got to thinking about guilt in regards to a cancer diagnosis. Did we do something wrong to make this happen? Did we not eat right, did we not exercise enough, did we smoke? I remember seeing a survey for appendix cancer patients, and many had smoked before diagnosis.
I smoked for many years before my diagnosis, and did not quit smoking until 2 years after my diagnosis. If smoking is related to stress relief, having a cancer diagnosis makes it VERY hard to stop smoking. I also told myself chemotherapy can cause cancer (it is carcinogenic), and all of the radiation for CT scans was carcinogenic, so I told myself I was at least going to choose one of my carcinogens. I finally did quit after 2 years, and quit for 6 years, then started smoking again for a year (hoping to lose the weight I gained when I quit, didn’t happen). I’ve now quit again for I think 6 years? Now I don’t want to smoke and don’t even think of smoking, though I still do enjoy the smell of cigarette smoke.
Interesting, so many people are made to feel guilty if they smoke and get lung cancer, but actually only one in 10 heavy smokers get lung cancer in a lifetime, 9 out of 10 don’t. I recently talked to an oncologist who said he has many lung cancer patients who NEVER smoked, and many newly diagnosed who quit smoking many years ago. One of my physicians recently died of lung cancer 2 weeks after he was diagnosed, it had metastasized to his brain. He had never smoked. The oncologist felt smokers should not be made to feel guilty.
I think we need to be careful not to make ourselves feel like we had any part in creating our cancer. People who do everything right and have healthy lifestyles get cancer, children get cancer. Cancer is never fair and no one deserves it, not you, not me. We need to be gentle with ourselves.
Just realized I’ve been gone for over a month! Please forgive me! I’ve started working part time, but am ending up busier than when I was working full time, With good things, though. I did a bike tour, am getting ready to go on a backpacking trip, I’ve been working as a CASA (Court Appointed Special Advocate for abused and neglected children, a volunteer job), will go to a CASA convention in Fort Wayne and will soon be coming to Baltimore for Heat if to Beat It! But today I wanted to talk about finishing treatment for cancer.
I don’t know about others, but my biggest struggle with cancer was after I completed treatment. I began my struggle the day I finished IV chemotherapy.
Interesting, because everyone who knew me thought I should celebrate finishing treatment. I’d made it through the big surgery, the intraperitoneal chemotherapy, the many months of IV chemotherapy. I’d been in treatment for the better part of a year. Now I could go back to my life cancer-free with a greater appreciation of all things.
After my last chemo treatment, I took myself out to eat. I always drove myself to and from chemo treatments and went by myself, so on my way home I took myself to a nice restaurant for lunch. But, I didn’t feel like celebrating when I got there. I felt disappointed, maybe even afraid. I knew the surgery had removed cancer, and the intraperitoneal chemotherapy and IV chemotherapy had been killing any cancer cells that remained. Now nothing was killing cancer.
Truth be told, I almost would have preferred to remain on chemo indefinitely. Once we figured out how to get rid of my chemo side effects, I lived a normal and very comfortable life on chemotherapy. It was only a few hours twice every three weeks. When I finished chemotherapy, I had no more tools. I was no longer fighting my cancer. If any cells had survived, they could grow and cause a recurrence. They could kill me. I’d read my cancer had an 80% recurrence rate.
I began to live a life of uncertainty. I wasn’t really sure if I’d be here and healthy in 6 months, if I could plan a vacation for next year, if I should start school to work on my Masters degree, which would take 3-4 years to finish. I had CT scans at first every 3 months, then every 6 months, and finally just once a year. But for many years, I only felt I could plan my life based on CT scans. If a CT scan was negative, I felt I could plan my future until the next CT scan. I always felt a CT scan was like going to court to hear my sentence. A negative CT scan meant I could continue my life on “probation”. A CT scan that showed more cancer would sentence me to more surgery and chemo and treatment. A CT scan that showed cancer might even be a death sentence. I’ve learned pretty much all of us feel that way about our CT scans. We’ve even named the fear before CT scans as “scanxiety”. I’ve known appendix cancer patients who are in bed for days before or after their CT scans, who ask for Xanax to take around CT scan time.
I understand why cancer patients often start using all of the on-line alternative treatments they read of….raw vegan diets, various supplements and syrups, controlling their thoughts and using “mind body” techniques. When we no longer have any tools, we look for new tools or more tools. I only believe in treatments I can investigate that are proven by research to be effective, so have never used alternative treatments, but I understand those who do. I think it helps deal with that sense of uncertainty.
Over time after finishing treatment I did stop living with that feeling of uncertainty, but it took a long time.
People need to understand that when we finish treatment, we are not done with cancer. We are not back to normal life before cancer. We still need support.
I’m moving forward to an new era in my life. My husband and I years ago bought a fixer-upper house (remember This Old House?). Well, it wasn’t very expensive, so we paid it off early, and over many years have remodeled and knocked out walls, so it’s a nice house now. Since we no longer had a mortgage, we paid off our cars early and any debt we owed. We aren’t quit retirement age, but my husband and I decided we no longer need 2 full time incomes, and we are betting older, but young enough and healthy enough to enjoy more time off.
So, as of tomorrow I will work part time, only 20 hours a week! I will keep my job, but also got a second “PRN” (as needed) nursing job. I love the idea of my life no longer being my job! It really was as all of my days were 10-12 hours and my job is very stressful. Now only half as much!
I want to do things I have not been able to do while working full time. I was once into martial arts and want to get back into that, it’s very empowering! I am also a CASA, a court appointed special advocate for abused and neglected children who are wards of the state. It’s a volunteer job I did before I started my current job. I loved it and now can do it again! My job has also become more of a desk job over the past year, so I want to get rid of some of the weight I’ve gained and to get back in shape…biking, swimming, hiking! I’ll have time for that now! I have a big list of things I want to do, and love that it’s summer so I can enjoy being outside!
I feel a bit guilty as I know many of you who are reading this are dealing with a cancer diagnosis and treatment and living with uncertainty. I lived with uncertainty for many years, and it is a difficult way to live. I’ve been where you are now.
But I can also be an example to you. You CAN have hope, you CAN survive and live your life again, you CAN move forward. Just take it once step at a time starting now, you are already a cancer SURVIVOR!!!!
I live just outside of Chicago in Indiana, which is often convenient. I can get to Chicago easily on the train, takes about 45 minutes and lets me miss the horrible traffic. I spent the day in Chicago yesterday in my quest for cancer advocacy. I was recently asked if I would like my organization, the Appendix Cancer Connection, to be part of an a non-profit that is an alliance of GI cancer non-profits, the GI Cancer Alliance. Until this year they had all GI cancers represented…except for appendix cancer. GI cancers together are the most common of cancers, and also the most deadly. The goal of the organization is to will work to raise awareness, provide education and advocate to prevent, treat and cure gastrointestinal cancers. That is something we all want. Appendix cancer may one day benefit from research into GI cancers that may find biomarkers or genetic mutations that are common to all GI cancers. All GI cancers might benefit from new treatments. We are still our own organization, the Appendix Cancer Connection and independent, but we are also going to be working with the larger organization. I am now part of their healthcare advisory team.
I was in Chicago yesterday for their board meeting, which was excellently attended and was a well-spent 3 hours. This is a link to the organization: GI Cancer Alliance.
With their help, I was also able to attend the ASCO annual meeting in Chicago. ASCO is the American Society of Clinical Oncology. The meeting is huge, thousands of researchers and scientist from all over the world who are all trying to discover cures for cancer. You can learn of the newest therapies available. Currently immunotherapy is very big in the cancer world. It is being used with great success to treat some lung cancers, but at least so far, immunotherapy has not been found to be very successful for treatment of GI cancers. For many years I was involved with another very large research organization, the American Association for Cancer Research. I was part of their Scientist-Survivor Program. I was given many great opportunities via that organization.
I will like working with the GI Cancer Alliance, and they want to help me in my work with the Appendix Cancer Connection. They say I need to get on Twitter! I have never used Twitter, but I guess I need to learn how to use it! If any of you can give me any help or links to Twitter education, I’d appreciate it!!
I am a nurse, an advanced practice nurse. I currently work as a Clinical Nurse Specialist and Clinical Educator in a hospital, and LTAC, a long term acute care hospital. Those are very difficult places to work! I recently joined the Oncology Nursing Society, as I do also work with oncology patients and am the president of this non-profit. They have monthly meetings, usually hosted by drug companies. Of course good food is provided. Some of what I’ve learned in these meetings is discouraging. We are learning about new and better cancer drugs just approved by the FDA. But I was kind of disappointed, one of the new drugs for lung cancer prolongs stage 4 lung cancer survival from 9 to 15 months. So without the drug, you might live and average of 9 months, with the new drug 15 months. I want years! Don’t we all?
But I have met great people and have been able to educate physicians and nurses about appendix cancer and this non-profit. I’ve met doctors who are oncologists who are truly caring and looking for the best new drugs for their patients.
I also talked to a nurse who worked in cancer research, she said most of their clinical trials involve immunotherapy, helping your body’s own immune system kill cancer cells. I want to learn more about these new immunotherapies.
Last night I met one of the drug reps who herself was a 24 year breast cancer survivor. She didn’t look old enough to be a long term survivor, so I asked her at what age she was diagnosed with breast cancer.
She was diagnosed at age 22 and her breast cancer was advanced, stage 3B. I assumed she was BRCA…had the gene that causes breast cancer as usually those patients are diagnosed at a young age. But no, her cancer resulted from another cancer she had been diagnosed with years before her breast cancer, Hodgkins Lymphoma. That cancer was treated with radiation to her chest, which caused her breast cancer. She’d had a bilateral mastectomy, chemo and radiation when she was 22, but is now a 24 year survivor of 2 cancers! She was married and spoke of her children. It’s great to hear stories like that, and being part of the Oncology Nursing Society will probable introduce me to more encouraging stories that I hope to share with you!
I hope to learn more about cancer research and new targeted therapies. I will keep you posted with what I learn!
I really think there is a need for community in cancer survivorship. Especially in our own appendix cancer community. I did for a very short time join a cancer support group, but I didn’t last long there. The community was mostly women diagnosed with breast cancer. And while I know cancer is cancer and we all shared that, I kind of didn’t fit in. And I’m sorry, but sometimes I have resented the breast cancer community. They have so much publicity and education, have so many fundraising events, have so many research dollars. We with appendix cancer see very little of that for our disease. For breast cancer patients, when one chemotherapy doesn’t work, there is always a new one waiting in the wings. My sister-in-law had stage 4 breast cancer, but her life was extended many years by new drugs that had just come off the pipeline. When one drug stopped working , there was another one that helped. You can also be screened for breast cancer, and breast cancer caught early has an almost 100% 5 year survival. There is no screening for appendix cancer, and if there was, it probably would be hard to get and not covered as our disease is so rare. And our surgeries are much more difficult than mastectomies.
The Heat it to Beat It walk is the closest I’ve felt to being in an appendix cancer support environment.
I would like all of you reading this to think about taking one step further in becoming part of an appendix cancer community. I will speak to and support anyone who calls or emails me, I do that whenever I can. But I also have forums on this site, and they can become an on-line support group for us (we are so rare we will never really find an in person support group). There is one other appendix cancer support group on line, the PMP Belly Button Club. I know those who have liked to be a part of that but sometimes get discouraged at hearing of so many struggles with this disease.
But we can start a support group here and maybe make it a bit different. Maybe we can talk about and support each other in our cancer struggles, but maybe we can also do something constructive. Search for opportunities to educate the public and medical community about our disease, support each other in coming up with ideas for events to support and educate about our cancer. Maybe we can even make it part book club! In my many years as a cancer survivor, I’ve heard of the book Emperor of all Maladies, a “biography” of cancer. I finally ordered a copy. I usually read on my Kindle, but this I ordered hard copy as it may be something I want to highlight. Anyone want to read it with me?
So maybe come aboard and join the forums, introduce yourself and lets have our own unique support group for just us!! Maybe we can even find a way to all meet in person some day! I can rent a shelter at my local fairgrounds and we can have a picnic! I really care about all of you.
And lastly, remember, we are ALL cancer SURVIVORS if we are still living even one day past diagnosis!
I am frequently asked if I know any long term survivors of appendix cancer besides myself. Well, since I’ve started this non-profit in 2008, I have been in contact with over 2000 newly diagnosed appendix cancer patients, I think it’s actually closer to 3000. But most contact me when they are diagnosed and I communicate with them through their surgery and their return to normal life, but after awhile most stop communicating with me. So I don’t know how long they’ve survived even though I’ve been doing this for 10 years. I have met many long term survivors in Baltimore Maryland, though, where renowned appendix cancer specialist Dr. Armando Sardi hosts a 2.2 or 1.1 mile walk (now it’s in the Baltimore Zoo!!) called Heat it to Beat It, referring to heated intraperitoneal chemotherapy. It is a wonderful way of meeting other survivors! I went for the first five years, I was there at it’s inception, but have missed the last three. I AM going this year though!!! I will also represent this organization there.
Heat it to Beat it is a WONDERFUL experience! There are several organizations there, including my own, that are non-profits devoted to appendix cancer. Dr. Sardi always has a wonderful presentation, the walk is beautiful and there is great food offered. Most of all, though, you get to see and meet hundreds of people who have been diagnosed with and survived appendix cancer. It is so inspiring! There is also a reception the night before the walk.
If you want to register for the walk, I started a team for this organization. If you sign up, register for the team Appendix Cancer Connection. You don’t have to donate any money, your registration fee is your contribution for our team. You can donate more if you want, but I would never expect that, we all have lots of medical bills. This is the link to register: Heat it to Beat It. I’m doing it cheaply this year! I got a $95 flight on Southwest by letting them send me their credit card, which I don’t need to keep if I don’t want, just pay the $95 bill. I am also, for an adventure, staying in this hostel, the HI Baltimore hostel, and not a hotel! It’s only $30 a night and has great ratings! I’ve only stayed in a hostel once before when backpacking the Appalachian Trail, and that was actually my best experience on the hike because of the great people I met. So I’ll stay there for 2 nights. If any of you come to the walk and want to stay in the hostel with me, that would be great!
Below I have a picture of the beginning of the walk in 2011. Again, it is a GREAT experience and I would love to see you there! And you would meet so many other survivors and leave with a great sense of hope!
Heat it to Beat IT 2011
It’s supposed to be springtime, but it’s a bit late coming this year! We are supposed to have twelve hours of snow starting tonight, though it’s not supposed to accumulate. But the grocery stores and gas stations were really busy today! I’ve always thought of springtime as a time of new beginnings. I personally prefer, if I am going to make New Year’s Resolutions, to make them on May first! It a time when all that was dead comes back to life, when the world is again filled with color.
This year I’d like to lose a little weight and get in shape to go backpacking and biking! Last year I did a bicycle century, rode my bike 100 miles in a day. I did that once before, six month after I completed chemo. I did trained for it while I was on chemo!
I was asked again today what I did differently after my cancer diagnosis. Did I live my life differently, did I change my diet? The answer is no, I lived my life after cancer exactly as I had before cancer. I did then and still do now sometimes eat fast food. I still occasionally eat junk food, and did right after my cancer diagnosis and treatment. I rode my bike a lot after the cancer diagnosis, but that was kind of my emotional outlet, when I felt scared or stressed I rode my bike. I remember on a bad day riding my bike in the rain when it was only 40 degrees! I smoked when I was diagnosed with cancer, and didn’t quit until 2 years after my diagnosis….getting diagnosed with cancer makes it very hard to quit smoking if that’s how you deal with stress! So I did nothing “magic”: to survive Stage IV signet ring cancer for so many years. I just got good medical treatment.
I’ve had some ask me about support groups. There are not usually in person support groups for this cancer as it is so rare. I know of an online one, PMP Belly Button Club. I also have forums on my new web site that I hope will become support groups. They are for patients and families. Those who read this blog, please try to sign p for the forums! I’ll be there! Maybe we can get a support group going! It is a tad tedious to sign onto the forums, but that is a good thing. I had a forum on a previous web site that was 80% spam because it wasn’t as secure as these forums.
I hope springtime is filling you all with the sense of a new and beautiful beginnings!
Just a quick post, more later, but there are a few emails I’ve been sent that for some reason I’ve not been able to reply to, the replies bounce. If you are someone who has not heard back form me, can you email me again? Or you can call me! One of you was a researcher I am very interested in communicating with.
Will be back with more soon!