I Cancervive.....

I CANCERVIVE…….

What a great play on words. I came across this picture while searching for a fellow Carcinoid Cancer patient and I have to tell you that it moved me in a necessary and much needed way and catapulted the despair out of my mind. What a message; I can survive.

I am a cancer patient, but what many people do not understand is that my cancer is rare and in fact to many it is unknown. This fact alone explains why so many people; and within the medical community itself, do not comprehend why I am still alive and battling. To most “pancreatic cancer” is a death sentence, which is true to a large degree but having said that, my cancer is not typical pancreatic cancer. Yes my cancer originated from my pancreas but is a very rare form of cancer itself. The many terms that are associated with it even baffles my own mind in trying to understand it. So much has to be learned and researched for CNET patients.

I was told I had a VIPOMA, which is a classification of an islet cell tumour of the pancreas. Steve Jobs had an islet cell tumour; for that reason alone others now have at least heard of an islet cell tumour, but the knowledge of this type of cancer is far beyond that of a “celebrity diagnoses”. In fact even after becoming a member of the rare cancer club I did not even understand or know how to refer to my cancer. Many people ask what type of cancer I have and I struggle to know how to describe it let alone name it. I have heard islet cell cancer, neuroendocrine cancer, carcinoid cancer….and the list continues as to classify it. All I know for certain is that I have cancer and it is not good.

The rarity is somewhat of a catch 22 because it is not typical pancreatic cancer or I would not have survived, and yet because of its rarity there is no known cure. The best chance of beating my cancer is de-bulking or removal of tumours. The tumours are typically slow growing, however they grow silently without giving any real symptoms or discomfort, until of course they have grown to a size that causes issue. By the time I was diagnosed with having a tumour on my pancreas it had grown to a whopping 8.5cmm. Who knows how long that &^%# thing was in me…..Another factor is that most are non-functioning which means they do not produce or secrete hormones. My tumour happened to be a functioning islet cell tumour, which meant that it produced a hormone called VIP OMA. That hormone is the hormone your body secretes to encourage your stomach to dump into the bowel; which in my case the tumour manufactured so much of it that I was dumping at least 1 litre of fluid every time I went to the bathroom and several times a day. Many days I am unable to leave my home because of the severe flushing.Many other patients that experience this have been diagnosed with carcinoid syndrome. These patients do not necessarily have the same cancer as me but we all belong under an umbrella of similar cancers.

The effects of this flushing cause severe dehydration, loss of sodium, potassium, and extreme loss of electrolytes. This constant fluctuation certainly takes its toll on your heart and heart muscles. For years this has happened to me which would explain the by-pass surgeries this past year……uggg

So now that I have explained this, here is the reality. When I was originally diagnosed I was 33, in June of 2004. I underwent a major surgery to remove the tumour , I also had the following removed with surgery; distal body and tail of the pancreas, spleen, gall bladder, appendix, right adrenal gland and several infected lymph nodes. I also suffered from liver infraction and serious gut issues. After my surgery I was not given any form of adjuvant therapy. Why? …….there is no known therapy . Years later I was given Sandostation LAR 30mg every 28 days, which helped with the flushing but has not helped with suppressing tumour growth. 

When I originally met with the oncology team I was told that if no new tumours developed I could live as long as 10 years, and now I face my 10^th year. So now what?  I have hit my 10^th year and have new tumours, which in fact are growing in size…………… I started to once again research my options as I am not ready to go under another major surgery without knowing all of the facts or options.I am supposed to have surgery on my liver within the next month. In searching my cancer facts I discovered that Dave Thomas founder of Wendys’ Restaurants also was a carcinoid patient, and died with in the 10 years of diagnoses. Grrrr. Steve Jobs also died within the 10 years of his diagnosis.  


In December of this past year my husband and I met with my oncology team to discuss my latest rounds of blood work and scans and was bold faced told that they are unsure of how I have not succumbed to my cancer as of yet, despite the tumour growth and high blood levels. 

After hearing that I had mixed feelings, of course my husband smiled and felt that those words were a testament to my fighting abilities. I on the other hand, even though it felt kind of good to hear that, I also felt extremely scared and became completely insecure about my continued ability to keep my death at bay. They are the experts aren’t they? Shouldn’t they know?  If they are surprised does that also mean they don’t know what to do next with me? 

I left feeling very discouraged and truthfully I started to lose my; what I thought was an endless supply of hope. I have tried to carry on as normal since early December but the very thought of another surgery and the knowledge that I have active tumours growing in my body has created a paranoia in my head. Some days I think I can feel this monster growing, moving around and plotting its next attack on me. Yup, I sound crazy but it is true. I am in my 10^th year and have active tumour growth and activity in me.

My ability to focus on the positive is weighing heavily on me. I am the one in my life that keeps everyone else’s fears and insecurities in check. I usually say I am fine and continue on with my daily routine even when I can’t. I am a fighter and they all see that, however; I know that I can’t keep doing what I do, the costs are too great on my body, my mind and spirit. Hope is all I have now. Faith is all I rely on. Strength and courage need to be replenished! I just do not for the life of me know how to do that. The odds are not good and I know that I need to accept my fate, I just do not want to!

I am frustrated that there is no known cure; I am frustrated that not many doctors understand this disease, and more over I am frustrated that patients of this illness have very little understanding of it. Why can’t we have special funding to research how to cure us? Why are we less important than Breast Cancer or any other cancer? We should not  have to advocate for help when we are trying to stay alive! My focus should be on getting necessary treatments and healing, not trying to find doctors in other countries to fix me. Nor should I have to worry that my oncologists do not have enough research money to further the cause.

So…..I cancervive is all I have now. I read that over and over again and even find myself writing those words on pretty much everything I can even without realizing that I am doing it. I know I can fight, I know that I will get through the surgery and handle the recovery part of it. I also know that I WILL be the cancer patient who defies the odds and passes the 10 year mark. I look forward to June 30^th 2014 when I stand proud on my 10^th anniversary. I also hope to someday hear that Carcinoid Patients, Neuroendocrine Patients, Islet Cell Tumour Patients and whatever else you want to call us have a true voice within the world of cancer campaigns and advocacy. We deserve; I deserve a voice. I also deserve a chance at beating this cancer with the help of the medical community.

If you are interested here is a link to the Canadian Website about CNETS

http://www.cnetscanada.org/ 

I better stop writing I am sure this is a long post to read, and besides my blood is starting to boil thinking of where my thoughts are now going. I usually end my posts with positivity or reminders that we can overcome anything we face, so on that note I CANCERVIVE! You CANCERVIVE! Together WE CANCERVIVE!

~Christine~