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.

Sunday, April 27, 2008

AACR Scientist<-->Survivor Post #6 New on the Horizon

Most chemotherapies up until recently "poisoned" all rapidly growing cells in the body, both cancerous and non-cancerous. That's why hair loss, nausea, vomiting, diarrhea, anemia and low white blood cell counts are commonly associated with chemotherapy. The side effects are caused by damage to normal cells that also grow rapidly like those in the digestive system and blood and hair cells.

New therapies for cancer treatment that are undergoing investigation by researchers include:

Molecular Targeted Therapies: Cancer cells grow and divide uncontrollably, develop a blood supply, and metastasize due to abnormal signals they receive inside the cell from proteins or enzymes. In cancer the normal protein and enzyme signaling pathways that regulate growth do not work properly because of genetic mutations in the cell.

An analogy often used is that of a car with the gas pedal stuck to the floor, the cells don't stop growing and dividing when they should, the signal to grow is stuck in the "on" position and the protective mechanisms, the "airbags" and "antilock brakes" aren't working. New research is directed to targeting abnormal protein and enzyme signaling pathways that cause cells to become cancerous. Different cancers have different signaling pathways based on different gene mutations, so the targets are different for different types of cancer.

An example of a targeted molecular therapy is the drug Gleevec. Gleevec targets a specific abnormal protein in cells of the cancer chronic myeloid leukemia. This cancer is caused by a defect in the Philadelphia chromosome, a genetic abnormality that causes the production of a cancer-causing protein molecule called BCR-ABL. Gleevec blocks this cancer-causing protein. Gleevec is taken in pill form and has few side effects, it does not involve receiving IV chemo through a port for hours in an office setting.

When Gleevec was being tested in an early clinical trial, the drug was only being tested to see if it was toxic to humans, not if it worked on the leukemia yet. But in the study, once a dose of 300mg was reached, all 31 of the 31 patients involved in the trial went into remission from their cancer. In a later study, 54 patients who had become resistant to all other forms of treatment for this leukemia were given Gleevec, and 53 responded. 5 year survival for those with this type of leukemia who are treated with Gleevec is now 95%. Prior to Gleevec, 30-50% of patients with this leukemia reached the advanced and often terminal stage of this disease in 3-5 years.

Some targeted therapies may be effective in more than one cancer if another cancer has a similar genetic mutation. Gleevec is also an example of this. Another cancer, a stomach cancer called GIST that had few treatment options but has responded well to Gleevec also.

Many other similar "targeted therapies" are currently under study and being developed. They have the potential to revolutionize cancer treatment.

Metastasis: 90% of cancer deaths are related to metastasis. If a cancerous tumors didn't metastasize, in many cases cancer could be an easy disease to treat. Most of us with appendix cancer have been asked by someone in the general public "Well, can't they just remove your appendix?". For most of us that is almost never the answer, because appendix cancer has almost always metastasized into our abdomens by the time it is discovered. The metastasis is what has the potential to kill us, not usually the original tumor on the appendix. Some of the most fascinating lectures I listened to were those discussing molecular targeted therapies to prevent metastasis. Cancer that couldn't metastasize would be a benign disease in many cases.

microRNA: micro RNAs are tiny segments of RNA that have just recently been discovered. Unlike other RNA segments in a cell that help transcribe proteins, these RNA segments function to turn genes "on" and "off". In many cancer cells, mutated genes inappropriately turn "on" to manufacture proteins or enzymes that cause the cancer cells to grow out of control or to metastasize. Sometimes protective genes are wrongly turned "off". Harnessing the power of microRNa could allow us to turn abnormal cancer genes "off" or protective genes that are not working "on".

p53 Pathways: The p53 gene is the "guardian gene" in preventing cancer. It also functions through protein signaling pathways that initiate repair of abnormal mutations in a gene, or initiates the destruction of a mutated cell that cannot be repaired. In some cases when the P53 gene itself is mutated or does not function, molecular targeted therapies are being developed to enhance or correct the function and molecular pathways of a mutated P53 gene. Over 50% of those with cancer have a mutation of the p53 gene.

Biomarkers: in these studies, blood tests are being developed to identify cancers before symptoms or other tests can identify them. The goal is for these tests to be 100% accurate. Cancers caught in early stages are the most curable. Colon cancer caught early is 90% curable, but even in it's early stage, there is an identifiably tumor. Biomarkers could allow cancers to be identified before tumors are even present so that progression can be stopped before the disease has a chance to cause harm. The goal is for the development of biomarkers that are 100% accurate.

Cancer Genomics and Personalized Cancer Therapies: In some cancer therapy, the majority of patients with a specific cancer respond to particular chemotherapies and medicines, while for others, the therapy has no effect. This is often related to subtle differences in the particular genetic mutations in an individual's tumor. One scientist said even every breast cancer tumor is genetically different from another.

Personalized genomic cancer therapies in the future may involve genetic testing of a persons individual tumor when a biopsy is done, and identification of the particular genetic abnormalities in their own tumor. This would identify which specific targeted therapies would be effective for their particular cancer. This would prevent a patient from receiving and paying for a cancer therapy that would not be effective on their particular tumor and would allow the patient to receive the most effective treatment for their disease.

Chemoprevention: This could involve medications taken to prevent cancer in highly susceptible individuals. Currently some drugs like Tamoxifen are used to prevent recurrence in those with diagnosed breast cancer, but drugs could be developed to prevent cancer in those who have been identified to have abnormal genes that make them highly likely to develop the disease. I know a woman who's family had a genetic predisposition to breast cancer. All of her female family members had died of breast cancer, so she had both of her breasts removed to prevent the disease in her own body. Chemoprevention may allow someone like her to take a targeted medication to prevent the disease without such radical prevention.

I'm sorry this post is so long, but I learned so much about so many avenues being pursued in cancer research at the AACR meeting. It was amazing. I have one last post to add to my series about my AACR involvement, rest your eyes in the meantime!

Tuesday, April 22, 2008

AACR Annual Meeting #5: What I learned about cancer

I learned so much about cancer at the AACR annual meeting. I attended many lectures by many scientists. These are some of the things I learned about cancer:

1. Some say that cancer is genetic, that the genes you are born with determine if you will one day get cancer. The truth is that the number of cancers inherited from parents is very small, though some of us inherit especially effective genes for preventing or suppressing cancer (the people who smoke forever and never get cancer). Usually cancer results from genes that become abnormal or mutated as we age, often in response to environmental factors like cigarette smoke or exposure to carcinogens in our environment. Usually cancer results from a combination of many genetic mutations, not a single mutation.

2. Cancerous mutations occur over a long period of time. Normally cancerous changes take at least 10-30 years to develop, one scientist said they may take even 30-50 years. Because of this, most cancers occur in older people. This is why cancers that occur before the age of 45, like mine, are suspected to have an inherited genetic component. With the aging of the baby boomers, the number of cancer cases in the US will increase by 30-50% as we approach the year 2020. One in three in the US will one day receive a cancer diagnosis.

3. Normally when a mutation causes cells to become abnormal, the cell has genes that automatically repair the abnormality or the cell is genetically programmed to commit suicide (apoptosis)to prevent the abnormality from being passed on. Tumor suppressor genes we normally have regulate this protection from cancer. In cancer some of these tumor suppressor genes are themselves mutated.

4. Normally cells are programmed to stop reproducing when there are sufficient numbers for the body's needs or when they come into contact with other cells. For instance, if you scrape your skin new cells grow to replace the damaged skin, but once there are enough cells to replace the damaged skin, cells have a mechanism to signal them to stop growing. Cancerous cells have lost the mechanism that signals them to stop growing, therefore they continue to grow into masses, or tumors.

5. Normally cells only grow in their own environment and cells of one organ do not travel to other organs, and if they do, they automatically die when they are in the "wrong place". Cancer cells have learned several methods of travel that allow them to go to other places in the body, and when they reach a new destination, their abnormal growth is unstoppable. The name for this is metastasis. Metastatic tumors are usually genetically different from the primary tumor they originated from. 90% of deaths from cancer are caused by metastasis.

6. If you remember in the news, the Human Genome Project was completed in 2003. It took 13 years, but new technology allowed the identification of the 20,000-25,000 genes in the human DNA and the identification of the 3 billion chemical base pairs that make up human DNA. This identification of the normal human DNA has allowed researchers to identify genes that are abnormal and that can cause cancer. A project is now in place, the Cancer Genome Project, to identify the abnormalities in the genes of cancerous tumors.

7. One gene discovered, P53, creates a protein that regulates cell division and prevents tumor formation, it also signals a cell to repair abnormal DNA. P53 has been nicknamed the "guardian" of normal cell genes. In one inherited genetic syndrome in which P53 is abnormal, cancer is usually diagnosed at a young age and the person is often diagnosed with multiple different kinds of cancer in a lifetime. I've met one woman my age who has been diagnosed with 5 different kinds of cancer in her lifetime, her first cancer diagnosis was breast cancer at age 13. I wonder if she may have had that syndrome. The P53 gene is mutated or damaged in 50-55% of people diagnosed with cancer.

8. Cancer cells are able to continue to grow into tumors and to metastasize because they are able to produce a substance that causes new blood vessels to form (angiogenisis) to supply blood, therefore food and oxygen, to the tumors. Normally this process doesn't occur in humans except prior to birth when the circulatory system is developing, in the lining of the uterus during menstruation, or during repair of injured tissues.

9. One lecture I attended attributed 30% of cancers to cigarette smoking, not just lung cancer, but also cancers of the mouth, throat and bladder. Cigarette smoking is also related to the incidence of colon, kidney and pancreatic cancers.

10. Twenty percent of cancers are related to obesity, especially in post menopausal women. This is associated with the fact that fat cells produce estrogen. Estrogen levels in postmenopausal women are 50 to 100 percent higher among women who are overweight than in women who are of normal weight. It is also thought that a higher production of insulin or insulin-related growth factors may play a part in promoting cancer in those who are overweight. There is more information here: National Cancer Institute Fact Sheet: Obesity and Cancer.

12. Metabolic syndrome is now seen as a cancer risk factor.

13. Poor diet is responsible for 25% of cancer cases. In one study, colon cancer patients on a Western diet had 3 1/2 times higher cancer recurrence after treatment than those on an Asian diet. While not yet identified, it is believed that there are chemical agents in fruits and vegetables that protect against cancer.

14.Some infectious diseases are also associated with a cancer risk; for example HPV and cervical cancer and H. pylori and gastric cancer. Over-exposure to sunlight is related to skin cancer.

Everything I learned helped me to understand that cancer is not a simple disease. Cancer actually comprises a set of 200 different diseases. Each type cancer is different, there is no easy one-size-fits-all solution. Cancer cells have evolved from a combination of many alterations in a normal cell over a long period of time, and cancer cells have found many ways to overcome and survive the body's normal defense mechanisms. Cancer is a vicious enemy.

I know this was a long post, so I will divide up posts. My next post will be about advances made in cancer treatment and what is new on the horizon.

Thursday, April 17, 2008

AACR Scientist<-> Survivor Program #4

I lucked out on my flight to the meeting but had some trouble getting back last night. The "windy city" was living up to it's name, so flights into O'Hare were delayed. The late flight made me miss my 7PM shuttle bus to Indiana, and I wasn't able to catch another bus until after 11PM, so I got home about 1:30AM unstead of 9PM. But it all worked out!

I know many of you are anxious to know what I learned at the AACR meeting. I attended many, many hours of presentations and was exposed to many new ideas and concepts. I want to go through all of my notes and organize my thoughts before I present what I learned here, though. I'm working the next few days so won't have a chance right away, but as soon as I get time to compile the information I will post it here.

In the meantime, another appendix cancer patient encouraged me to watch this video forum offered on PBS, it was great and I want to share the link here: Take One Step: A Conversation About Cancer with Linda Ellerbee . It would also be an excellent presentation for friends and family members of those diagnosed with cancer to watch.

I also received this from MSKCC today, information about emotional and social support needs of cancer patients with a video clip from Dr. Jimmie Holland: Quality Cancer Care Must Address Emotional Needs

AACR Annual Meeting #3: A Scientist and a Survivor

I am writing this while in the San Diego airport. I arrived the recommended two hours early and got through security quickly, so had some time. I stopped at the TCYB stand to get a frozen yogurt and took a seat to eat my cone. Another woman bought her food and then sat next to me. She asked if I had just attended the AACR meeting. I don’t know why she asked, as I wasn’t carrying the tote or anything that would have identified my participation. It turned out she had also attended the meeting.

Once I said I had attended, we struck up a conversation about the frustration of wanting to attend simultaneous presentations and having to pick and choose. We talked of what we'd liked about the meeting. We talked about the CD, available Podcasts, research abstracts. We got to talking further, and it turned out she was a scientist; an oncologist who had done extensive research into gastrointestinal cancers and was currently studying prostate cancer. I told her I was a gastrointestinal cancer survivor. We had an immediate connection.

I told her my cancer story and she told me of her husband, a more recent cancer survivor. We talked about her research and my survival. We talked about people we’d both known who had not survived the disease, young people who had much to live for. It was a wonderful conversation, in just minutes she felt like an old friend. I was inspired by her research; she was inspired by my survival. We were both almost in tears at one point. Before we parted, I thanked her for her dedication to cancer research; she thanked me for being a survivor, for being an example of research success. We exchanged information and plan to keep in touch via email.

Before the meeting I'd never spoken with anyone involved in cancer research. I'd probably have been intimidated by such a conversation. Having been in an environment attended by so many scientists for several days, though, and having interacted with them has really changed the equation for me.

When I heard of the Scientist-Survivor program, I wasn’t really sure I understood the philosophy. Now I feel I understand it on a more personal level. Maybe my airport interaction was a great illustration that scientists and survivors need to support, inspire and learn from each other, that we truly need to interact. Maybe in the end, our mutual passion and support will bring us that much closer to the goal of removing the terrible threat that cancer is to humanity.

Tuesday, April 15, 2008

AACR Scientist<-> Survivor Program Post #2 : Dr. Jimmy Holland

It will take me several entries to say all I have to say about my time at the AACR Annual meeting. It's been an amazing experience. I haven't seen much of San Diego as I've been in the conference center almost all of my time here, but I did take a short walk along the seaport after attending my last presentation today. I leave tomorrow morning to return to Chicago.

I am participating in the AACR meeting as part of their Scientist<-->Survivor program. The goal of the program is for those of us who advocate for cancer patients to be exposed to and to learn more about the ongoing science of cancer research from the scientists. It is then hoped that we will communicate our new knowledge and use it to better advocate for those afflicted with cancer.

In this post, I'd like to tell you about one especially wonderful event. On my website I list under recommended reading the book "The Human Side of Cancer: Living with Hope, Coping with Uncertainty" by Jimmie C. Holland, M.D. and Sheldon Lewis. I loved the book. I read it when I was dealing with the emotional aftermath of cancer, it is still on my bookshelf. I've linked an online chapter of her book to my website and blog, The Tyranny of Positive Thinking .

Intrigued by the book, I'd learned more of Dr. Jimmie Holland years ago. It turned out she'd created the field of psycho-oncology. She is a leader in addressing the emotional and social aspects of a cancer diagnosis. She is also the founding president of the American Society of Psychosocial Oncology. This is a link to her biography: Dr. Holland's Biography . She even works at Memorial Sloan Kettering in New York City, where I was treated.

When I got here, I heard Dr. Jimmie Holland would be at the AACR meeting, she would even be involved with the Scientist<-->Survivor program! She was to give a presentation entitled "Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs". The chance to meet Dr. Jimmie Holland for me was like a kid getting to meet his baseball hero.

I was able to attend Dr. Holland's presentation, and I was even able to meet with her personally! We talked a few times, she was very approachable and interesting. She has a help line she may allow me to post to my blog and web site. She said she would support me in giving me information and tools to hopefully start an emotional support system at a large oncology practice near my home. She is a very caring doctor who truly sees the whole cancer patient. When we talked, she said 50% of those diagnosed with severe cancers like ours seek professional emotional help at some point in time. I'm sure an even greater number of us could benefit from that. In hindsight I wish I had sought help during the first several years after my diagnosis. It might have made that time a little easier.

But I think it's imperative that our oncologists and medical professionals learn to address us in a more holistic way. I remember reading my chart once (I always do that). The only part of my oncology chart that ever addressed the emotional aspect of my diagnosis was an entry in a physician progress note that documented I was a bit emotional during my initial appointment (the one where I was told I was not likely to survive to raise my kids, who were 10 and 11 at the time). No other reference was ever made to anything other than my physical exams at future ongoing appointments.

I hope one of the things I take home from this meeting is an abilitiy and inspiration to help others in their emotional cancer stuggles at the large oncology practice where I was treated.

Monday, April 14, 2008

AACR Scientist<-> Survivor Program Post #1: Bullet Points

I've been attending the AACR Annual Meeting 2008 for the past two days, and it has been an amazing experience. I am learning so much. There's too much to write here right now...I want to get up early tomorrow. I want to take advantage of everything this event has to offer while I'm here, so I'll just bullet point some of the highlights for now.

  • As a medical professional I love learning what is new in medicine, and there is so much to learn here. There is more offered here than I could ever take advantage of. Several times I've wished I could be in two (or three) places at once.

  • I've attended lectures by scientists from MIT, MD Anderson, and John Hopkins today. I've learned so much. I didn't realize how much I didn't know about cancer. Cancer is an even bigger and smarter enemy than I knew it to be.

  • This event has been a beautiful visual representation of hope to me. I've seen thousands of scientists, some of the greatest minds in the world, all who have chosen to dedicate themselves to curing cancer. I've seen thousands of others here to learn and share what they've discovered. I've learned of research released only in the past 2 months, findings less than a year old. I see such dedication and commitment to finding a cure for cancer, so much passion, so many resources. I truly believe now that one day they will succeed in beating this terrible disease. How can they not? It's inspiring and hopeful to see how many people care about curing cancer.

  • I've felt very valued as a survivor and advocate in the scientific community. I guess I expected such brilliant minds to look down at us, to just humor our questions, but they don't. They treat us as colleagues. We are seen as an equal and integral part of the picture and part of the process in changing the world and in beating cancer. We can make a difference, we can help in the fight. That has been humbling....and motivating.

  • I've become passionate about funding for cancer research.

  • I've walked a lot, not slept much and have written pages and pages of notes. I have so much I want to learn more about after I get home.

    More later!

  • Friday, April 11, 2008

    Made it!

    I am in San Diego,my flight was one of the few that wasn't canceled so I made it out of O'Hare at the time originally scheduled. I had time this afternoon to take a trolley tour of the city to see most of it and to learn more about it's history. San Diego is beautiful; the architecture is beautiful, the landscaping is beautiful, and the weather is beautiful. There's a lot to see and do, and there are many cultural and historical venues. It is truly a nice change after this winter in Chicago....we were cold from November on. Snow began early December and it's even supposed to snow in Chicago this weekend.....we are pushing five months of cold and gloom. San Diego is truly a breath of fresh air in comparison. I'm guessing they don't get seasonal affective disorder here!

    The convention center where the American Association for Cancer Research's Annual Meeting 2008 will be held is just a couple of blocks from my hotel. The convention center is huge, I think about 5 city blocks long. They told me to bring comfortable shoes, I'm understanding why now! I heard there will be over 20,000 scientists, researchers and doctors here from all over the world.....all people working to rid the world of cancer. I am very proud and honored to be in such company and to be in such a learning environment for the next 5 days. I know it will be an amazing experience and that I will learn a lot from some of the greatest minds involved in cancer research in the world. I registered for the event and got settled in this afternoon, the convention starts tomorrow.

    Wednesday, April 9, 2008

    Up in the air....or not?

    My San Diego flight is up in the air.....or rather grounded at the moment, due to the American Airlines aircraft inspections. A friend emailed me to let me know of the problem, and my flight is involved. Just kind of a wait and see thing I guess, to find out if my flight will be reinstated by Friday or if someone can find me an alternative flight. My daughter thought it was great they were doing the safety checks before I got on the plane, I probably would have preferred it became an issue after I had landed...I'm okay with living dangerously nowadays! Here's hoping they get it straightened out quickly! I'd hate to miss any of the San Diego event.

    Just a P.S., I've added a survivor section to my blog, check the sidebar on the left. I've added links to the stories of inspiring appendix cancer survivors who have reqested to be part of my site. If anyone else owns a site they'd like me to link there, let me know!

    Sunday, April 6, 2008

    Life 'O Dennis

    I love being in the cancer community, but it gets tough sometimes. I get to cheer for those who are courageously fighting (and surviving) our cancer, but I am also sometimes in contact with those who lose our very tough battle.

    I've learned there is no fairness in cancer, especially appendix cancer. I know of a 15 year old, a 21 year old and a 24 year old diagnosed with our disease. People with long and bright futures ahead of them. Mothers of very young children, people newly wedded, people newly retired. All fighting this monsterous disease.

    I know of a few with appendix cancer who have never contacted me but who have linked their sites to my web page or blog. So, I check in on them now and then. I read their blogs or Caring Bridge sites. But I only rarely leave comments on their sites. I don't want to intrude. But I love the comments to my blog, so maybe in my case it's more laziness.

    One site I'd been reading was "Life 'O Dennis". Dennis Rich had been fighting appendiceal cancer for 4 years, he was most recently being treated in Chicago, so he was almost my neighbor. He'd kindly linked my blog to his some time ago. So in a way we kind of had a relationship, though we'd never communicated. He didn't have an email listed on his blog, but I could have commented on his site, I guess. But I didn't. I just decided to check his site to see how he was doing, I've done that for awhile.

    Dennis just lost his battle. I knew he was terminally ill, he knew it also. But I for some reason expected him to keep posting to his blog, even though I'd known he was terminally ill.

    Dennis was only 37 when he died. He had a PhD in physics, he was a musician, he was a devout Christian. He'd taught physics for two years in a college only a few hours from my home. He'd published this entry on his blog:

    "The battles ahead will be as much psychological as physical. Everything one lives for comes to the fore when faced with one's mortality. Were the sacrifices of the life of faith worthwhile? For that matter, can I even boast in what little "sacrifices" I may have made? I trust in my God at this point, which is all we can do. He Who has proven able to turn the greatest of evils into the greatest of goods, can certainly turn my life into something of value. And even the end of my life."

    Dennis also posted this on his blog, it is profound wisdom:

    "God has created me to do him some definite service; he has committed some work to me which he has not committed to another. I have my mission; I may never know it in this life, but I shall be told it in the next. I have a part in a great work; I am a link in a chain, a bond of connection between persons. He has not created me for naught. I shall do good, I shall do his work; I shall be an angel of peace, a preacher of truth in my own place, while not intending it, if I do but keep his commandments and serve him in my calling.

    Therefore I will trust him. Whatever, wherever I am, I can never be thrown away. If I am in sickness, my sickness may serve him; in perplexity, my perplexity may serve him; if I am in sorrow, my sorrow may serve him. My sickness, or perplexity, or sorrow may be necessary causes of some great end, which is quite beyond us. He does nothing in vain; he may prolong my life, he may shorten it; he knows what he is about. He may take away my friends, he may throw me among strangers, he may make me feel desolate, make my spirits sink, hide the future from me -- still he knows what he is about.

    John Henry Newman, Meditations and Devotions, III, 1855

    Dennis' life was of value to many, I can tell from the comments on his blog. I was able to learn of his courage and his faith and his endurance as I read his blog. His life was of great value to me.

    I look forward to meeting him one day. And I so agree with Dennis, trusting in God is all we can do. That has been my greatest cancer lesson. I trust God without explanation, without understanding. I'll learn the why's later. I trust that someday it will all be made clear.

    Joy and peace, Dennis. I am glad for you that your battle is over.

    Saturday, April 5, 2008

    California here I come!

    I have been honored in that I was invited to attend the Annual Meeting of the American Association for Cancer Research as part of their Scientist<-->Survivor Program in San Diego, California this month. I was very grateful for the invitation.

    I will leave on April 11 and return to Chicago on the 16th. I will be meeting scientists involved in cancer research along with other survivor advocates from all over the country. I will be able to learn what is currently in the forefront of cancer research.

    I am not exactly sure what to expect as I have never attended an event like this before, but I have received an itinerary that has a pretty packed schedule of events, meetings and opportunities that I will participate in while there. I'm sure it will be the experience of a lifetime. I have been assigned a mentor and two cancer scientists. I will also be privileged to meet Dr. Andrew Lowy, one of the renowned HIPEC specialists, while there. I have recently been working on a poster about my advocacy efforts that I will present there.

    I hope to post to this blog if I can while I am attending, I believe my hotel has wireless access and I will bring my laptop. I want to let you all know what I learn there.

    This event will also mark the unveiling of a non-profit organization I have recently founded, the Abdominal Cancer Connection. My organization is in it's infancy and was granted 501(c)3 status by the Federal government just this week. I have chosen a small board of directors, they are wonderful people who are very supportive of me and my cancer advocacy. I hope to have my first board meeting soon. I am also in the process of putting together a medical advisory board. I will construct an organizational web site in the near future as I obtain initial funding.

    My organization will provide education and support to those diagnosed with advanced abdominal cancers (peritoneal surface malignancies) originating from the appendix, but also from abdominal sites such as the colon, stomach, small bowel and pancreas in addition to primary peritoneal cancer.

    All of us diagnosed with these cancers are candidates for some of the same treatments provided at some of the same hospitals by some of the same specialists. We all face the same obstacles and issues associated with diagnosis and treatment including understanding the disease and available treatment options,accessing medical and surgical treatments, travel and housing related treatment needs, insurance issues, dealing with post-op physical, emotional,and nutritional issues, caregiver support and childcare issues...the list of obstacles we all face is huge.

    I want my organizations to be able to offer education and support to all of those diagnosed with advanced abdominal cancers as they deal with all of these obstacles. Hopefully in the end the organization will also be able to fund research into these cancers.

    I've been in the abdominal cancer community for a long time and see the needs daily. I want my survival to make a difference to others struggling with these cancers. I hope my non-profit will be the avenue that allows me to make a difference and to support others newly journeying on this very difficult road.

    Wednesday, April 2, 2008

    Not a gift and the four legged stool

    I was recently reading part of Crazy Sexy Cancer Tips, a book written by a young woman with a rare cancer who has extensive cancer involvement in both her liver and in her lungs. Her cancer has not gone away, but has also not progressed for several years. She has been living with and in spite of her cancer for awhile. I communicate with a few who are in similar circumstances. They have lower grade appendix cancers and have never eradicated the disease. They have lived with cancer for many years as a chronic illness. They periodically have surgeries or chemo to stall the disease for awhile longer.

    While I don't follow the author's alternative/complementary lifestyle, I loved a few things I read in the beginning of her book. She said that cancer is NOT a gift, that she hates the "G-word" in regards to cancer. That's what made me truly dislike the country song "Live Like You Are Dying", the song people sent me the lyrics to that seemed to promote the cancer "gift" mentality. Somewhere in the world the idea was presented that cancer is a gift, that it makes us value our health and our relationships and our lives more and always results in a positive life experience and outcome. That is so untrue. Cancer is a horrible disease that robs us of our normal lives, that causes us pain and heartache and financial difficulty, that takes over our lives and often obliterates our goals and our life plans. It steals our time and our choices. Nothing "gift-like" about it. We search for meaning in the experience in an attempt to make some kind of sense out of the destruction it wracks in our lives. Cancer is an enemy, a ruthless dictator, a destroyer. Cancer is not a gift.

    I loved another analogy she used in her book. That our lives are like a four-legged stool. The four legs are our physical, mental, emotional and spiritual health. If any of the four legs weaken, we topple. A cancer diagnosis effects all of our four legs at once. We really need to pay attention to our spiritual, emotional and mental health while trying to survive cancer. They are all equally important, though our physical leg seems to get all of the attention at first and for a long while after diagnosis. I've communicated with almost 400 appendiceal cancer patients, and I'm here to tell you that physical pain and comfort are not the main topic of most of my conversations with cancer's the emotional, spiritual and mental trauma the disease causes that afflicts us so horribly. Our hearts, minds and spirits are always in more pain than our bodies.

    I hope one day we see a cure for cancer, that it forever loses it's power to destroy. That there will one day be no need for my web site or blog.