Why Don’t you Look Sick?

In June of 2004 I underwent a life altering surgery that was required to save my life from cancer. I was diagnosed with a Neuroendocrine Tumour on my Pancreas, more specifically an Islet Cell Tumor. You may have heard of this type of tumor, Steve Jobs CEO of Apple was diagnosed with this around the same time as me. It was widely spread in the media not just because it was him, because of is rarity. He was fortunate that his tumor turned out to be non cancerous. I was not so lucky. 

For every 10,000,000 cases of cancer 1 person will be diagnosed with an islet cell tumor. For every 1,000 persons diagnosed with an Islet Cell Tumor 1 will be diagnosed with a Functional Vipoma~ Meet Christine Berry Boulos~ 270 reported cases to date. Currently I am the only person alive with it, to my knowledge. The chances of getting this cancer, is pretty much the same chance of winning the lottery 3 times & getting struck by lightening 2 times in the same day…. I KNOW! 

In June of 2004, I had surgery preformed by a transplant surgeon at the University of Western Hospital; without the surgery 4-6 weeks survival, chance of surviving the surgery itself 20%. The surgery lasted over 9 hours, the following was removed, distal body and tail of my pancreas, spleen, gall bladder, appendix, adrenal glands, 19 lymph nodes, stomach manipulation, partial liver…and my hopes of growing old.

After surviving this I was told that since my cancer is so rare, there would be no chemo or radiation as there is no known cure. Sent on my merry way to go home and live life. There have been a ridiculous amount of complications from this procedure. I, quite simply put, am a wreck physically. But I don’t look sick. Why should that matter you ask? Well… because I do not fit the “cancer look” (bald head, oxygen tank, and plastic tubes hanging out of me) therefore people assume I must be fine!

I am writing this blog with extreme sadness, in fact I am crying. (I admit it I am weak when it comes to this) I am treated differently than most ill patients. People assume that because I do not look sick, I mustn’t be any longer. I have been doubted by the best. It has caused great sorrow and stress to me and my children. I have been questioned about my illness by even people I love (d) ha ha (screw you), as they can’t see the continued pain that I experience. My children were teased at school about their mother being a “faker”, as a few other children had over heard their gossiping bitch ass pieces of shit mothers in the parking lot saying “well she doesn’t look sick”. 

My cancer of the pancreas is not a typical pancreatic cancer case, such as with Patrick Swayze, although my 9.5 cm tumor was on my pancreas; it is not typical pancreatic cancer or I would be pushing daisies right now.

Recently my cancer returned, no cure, no… (Fuck that). I will beat it. I applied to Disability as I am unable to work due to extreme side affects of my illness. When meeting with the intake loser, bitch whore she remarks “wow you look great for a cancer patient, you don’t look sick”, then proceeded to ask in a sarcastic high pitch condescending way “what type of cancer do you have?” “Do you HAVE a doctor to confirm this?” I felt her doubt, her contempt for me not being bald and in a wheel chair clinging to every breath like it may be my last. I can tell you that I am angry and sick and tired of not only having to deal with the fact that I have this horrible disease eating me away, but that I would have people question whether or not I am truly sick because of how I look.

I am not bald, because there are no medications or chemo to take that will cure me. (Eureka!) So let me explain my daily routine. I wake very early every morning, as I usually can not sleep. I have no pancreas; I must take insulin to function. I am unable to digest most foods. If I do eat I must take pancreatic enzymes to help break down my food. My Vipoma levels are ridiculously high (that is the hormone my tumors secrete into my body) that hormone is what your stomach produces which in turn tells your small bowel to dump… and for me feast or famine, my bowels are constantly dumping. 

That’s right I defecate all day long, 1-2 litres of fluid each and every time I go. This has caused my potassium levels to be non existent, my electrolytes are always off, and I am ready to have a massive coronary at any given time. If I need to go out, I starve myself; rarely do I eat anything in the presence of others as I know I am a time bomb waiting to explode.  I stay close to home; my ventures are short and sweet. My body is weak; my weight is a huge problem for me. I can loose up to 5lbs in a couple of days. My ribs are poking through my stomach, and the truth is I just wish I was fat and healthy again.

There are well wishers that see me and compliment me on “doing well”, and I understand why they would think I am healed. However I need people to understand that there are invisible illnesses, which many people face each and every day. I know a man that has a similar illness as me, after having a medical benefit to assist with his financial dealings was actually investigated by the police for possible fraud. Why? Because someone who saw him thought “he doesn’t look sick” and in turn complained to another person who in turn called crime stoppers, which turned into a campaign by the police.

I am angry as I know my illness has had a tremendously negative impact on my children. They fear losing me all the time. The last thing that I should have to do is console them for being  defendants of my illness. My time should be spent fighting this disease and not having to prove that I have it!

Big sigh of relief (EXHALING NOW) Thank you!

I am very sick, and yet I don’t look sick…..so I wish I looked sick and really wasn’t.