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!
Easter is a really important holiday. I’m a Christian, but if I didn’t believe in Easter, I wouldn’t believe in Christ or the Bible or churches. The whole point of Christianity is that death has been defeated, we will never cease to be alive, to belong, to be loved.
Of course, facing a death sentence, you delve into your spirituality. I’d always thought of myself as Christian, but I had to delve deeper into it. Think harder about it, KNOW what I believed. A friend bought me a book, the Healing Power of the Christian Mind. I don’t believe that you can cause or cure you cancer with your mind, and I don’t believe God heals everyone. I’ve known many devout Christians who have died of cancer, who believed God would heal them, but weren’t healed. But for some reason that book brought me peace, I read it more than once. I don’t have a clue why, but I own two copies! Now I can’t remember what it was about or why it helped me, but it did.
I also developed an obsession with reading books about near death experiences, my mother told me she’d had one while in her 20s when she was near death and after that was not afraid to die. One of my favorite books about NDEs was a book by Randy Alcorn, In Light of Eternity.
When Christ was resurrected, he had a physical body that someone could touch, could hug. He still ate food. When I die, I will get a new PHYSICAL body, that will never get sick or have cancer. I will never struggle with my weight, my sense of smell, which I lost maybe via chemo, it will be perfect. I’ll smell flowers again. The bunion on my foot will be gone. I’ll be reunited with those I’ve missed, I’ll be able to give them hugs. Heaven will I believe be earth as it was in the beginning, perfect. Christ in his new body was able to to instantly be in another place with no form of travel. Will we be able to do that too? That would mean no beauty disrupted by highways and cars and pollution. When you read of near death experiences, many say the colors and the sense of love and the beauty they experienced couldn’t be described in any words they knew. That there were more and better colors. If you get a chance, read some of these books, they will give you a sense of what to hope for. And I believe the descriptions. I don’t believe I will be on a cloud playing a harp or be in an eternal church service when I die….I believe we will do things we love doing.
Easter means all of this to me. It’s a gift we can choose to receive. I am not afraid of being dead now, as much as I am afraid of dying, of maybe the pain or discomfort involved, of saying goodbye to those I love, of causing them pain. But in a recent sermon I heard about eternity (I listened to it online :-), the minister used a garden hose long enough to stretch around the world several times, to reach to stars that were light years away as an example of eternity. But there was a 2 foot long section of the hose that was a different color. That section, he said, was how long our life is, just a tiny piece of the eternity of time. Those we leave won’t miss us for long, but will be with us for eternity.
My wish after being diagnosed with and surviving cancer, was that when it is my time to die, I want to just die rapidly. I don’t want to live to contemplate my death and my losses again. My father died the way I want to die. He was sitting in his recliner one night watching TV, and yawned. My mom asked him if he wanted to go to bed, and he said in a bit. Then he quit breathing and his heart stopped. He just died. He didn’t have to contemplate losing his life, his loved ones, his future. He was very fortunate.
But as a nurse I am always looking at statistics. Unfortunately, 90% of us will die slow deaths from chronic disease. Deaths like my father’s are only 10% of all deaths. Only one in ten are blessed with those deaths, dying in your sleep in your bed…..
As I have been in the cancer community so long, I have communicated with many who are dying of cancer. As I want to support cancer patients, I want to support ALL of them. I want to help those seeking treatment, but I also want to help those who will succumb to their disease. I have made some friends I have lost to appendix cancer.
In order to get better at helping those who would die from cancer, I worked as a volunteer for a hospice organization for 6 months. I worked as a respite aid. I stayed with cancer patients while their families went out for dinner or to appointments. Sometimes families just needed to get away for a few hours.
I learned how much hospice can offer. The hospice I worked with offered nursing aids who would bath the patient, change bed linens, feed patients and even cook meals. Nurses saw the patients often and were on call 24/7. Patients were never allowed to be in pain or to be anxious. Counseling was offered as were clergy services. Hospice workers and volunteers would help patients make memory boxes for those they were leaving behind. The hospice offered grief counseling to families for a year after the patient had passed. Patients last days were made comfortable spiritually, emotionally and physically.
The sad thing I’ve learned about hospice is that usually patients enter hospice only days before they die, when they could have had hospice services for 6 months. Hospice services help both the family members and the surviving loved ones. When I know I am nearing my end times, I want hospice care. For what it’s worth, in my cancer journey I learned of one woman who entered hospice (to enter a doctor has to say they expect you to die within 6 months), and she didn’t die! She lived for 8 years with hospice services! At least with her hospice, once you were in you could never be discharged!
I’ve been recently speaking with someone newly diagnosed, and I was remembering how I felt when I was newly diagnosed. Interesting, someone I think said, “but we all know we are going to die”, as if knowing that was a given. As if knowing I might die was something we all knew every day.
But when I was diagnosed, I was told by a respected cancer center at a major city university hospital that there was no treatment for my cancer. And we know that cancer that is not treated is fatal. My kids were only 10 and 11. That meant I would not be there to see them finish grade school. Not see them grow up, not be there for their first dates, their first boyfriends, learning to drive a car, their first job,marriage if they chose to marry. I would involuntarily abandon my children. What was the worst thing a mother could do….abandon her children. I wouldn’t get to grow old with my husband. He would have to raise our children alone. I wouldn’t go back to school for my Master’s degree, I wouldn’t go on more vacations, I’d have to leave my job. Funny, at the moment I can’t remember where I was working when I was diagnosed, so I guess my job wasn’t really important then. But the sense of impending loss was overwhelming. Though the day before I knew I would someday die, knowing that I likely WOULD die in a limited amount of time was totally different. I remember thinking if I died, those who loved me would lose me, but I would lose EVERYTHING!!! Everything I knew, everything I did, everything I hoped for, everyone I loved.
Facing a potential death sentence is MUCH different from knowing you will someday die. The day I was diagnosed, my “normal” life was gone.
Even when I had some hope, when I was going to get treatment that was 28% successful in a clinical trial, I still had a good chance of not living more than another year or two. I read everything, and for my particular variety of appendix cancer, numbers said it was 90% fatal, some research I read didn’t even give a number, it just said outcomes for my particular cancer, signet ring, was “poor”. The other varieties all had numbers for survival, not mine. Take my advice, don’t look for survival numbers! The truth is that many of the numbers include treatment that only included the removal of the appendix and a hemicolectomy and IV chemo, not the cytoreducation surgery and HIPEC, which has a much better outcome. The number also include some that received no treatment at all.
I think I remember someone telling me I was lucky, because I probably lived everyday like it was my last, appreciating everything and stopping to “smell the flowers”. I did live for awhile like every day was my last, and it is a horrible way to live! Think of your day, thoughts you might have. Your daughter’s birthday is next month, you are going for lunch with a friend next week, vacation in 6 months. You have things you want to accomplish at work tomorrow. We all live assuming and comforted by the fact that we have a future. We look forward to things in the future, we dream. That is taken away when you feel you may have no future.
For a long time I didn’t live every day like it was my last, but I didn’t plan my life beyond the next CT scan, which was in three or six months. After I had a clean CT scan, I could plan my future only until the next one. That was also a difficult was to live. It was a relief when CT scans became once a year.
I did appreciate the milestones I have able to enjoy. My daughters’ graduations from grade, middle and high school, teaching them to drive, being there for first boyfriends. Both have now graduated from college and one has married (I am not a grandmother yet).
I will be a 17 year survivor in May, May 16th. I am not considered cured, they don’t use that word anymore, I am just living in long-term remission from cancer. I remember when I was younger they called cancer cured if you lived 5 years cancer free; no longer, but that’s okay. I no longer get CT scans or see an oncologist. I don’t currently fear a recurrence anymore, I feel I am just as likely to get a new cancer.
You lose your sense of “normal” when you are diagnosed with cancer, but in the end, you can develop a new, and even better “normal”.
I will be attending an educational offering this week about a new cancer therapy, Cart T cells. It is a form of immunotherapy. I’d been interested in immuntherapy before, getting your body’s own immune system to destroy cancer. Cancer has a way of currently evading our immune system, so our immune system is not usually able to defeat cancer. The trials I’ve seen of immune therapies in the past have not been very successful.
Cart T cells are a form of immunotherapy that seems to be very successful in fighting certain blood cancers (not solid tumor cancers like ours). It is very effective against some leukemias and lymphomas (blood cancers). I am still learning, but what I have read is that white cells from the immune system are removed from the patient (blood is removed from the patient and the white cells are taken out of the blood and the rest of the blood is returned to the patient). These white cells that are removed are genetically altered to fight cancer, then are multiplied and returned to the patient. I read of a clinical trial in which 30 children with a form of leukemia who had failed all other treatments were treated with this immunotherapy. 27 of the 30 experienced complete and long lasting remissions. These were 27 children that would have likely died form their cancer. That is amazing!!! I’m hoping that since you are only returning the patient’s own blood cells to them that there are no side effects.
While this treatment currently would not help any of us with appendix cancer, they are working on advancing this therapy to work on solid tumors like ours. So maybe one day! It’s possible there would be a treatment that did not involve any chemotherapy or surgery to cure cancers.
Wouldn’t that be amazing!
I am attending the educational offering this Thursday evening. I’ll get back to you to let you know what I’ve learned!