One of my favorite movies is Joe Versus the Volcano. It didn’t do incredibly well at the theater, but I think it’s a cute movie and just makes me happy. :D
I seem to identify with Joe, a fact that my wife recently reminded me of. It’s not that I work in a cave-like office with an obnoxious boss. Nor do I have a desire to jump into a volcano. But, like Joe, I have a tendency to feel sick, sore, depressed or generally cruddy quite often.
During one of Joe’s doctor’s visits, he was told he had a “brain cloud” and was going to die. Bad news, off course, but now Joe had something to identify as the root of all his ailments. With that concern out of the way, he could now focus on his life or what was left of it.
Well, the revelation that I had NET cancer was not quite what I expected.
“You have some time left, Mr. Banks. You have some life left. My advice to you is: live it well.” – Dr. Ellison.
First, I imagined if I were diagnosed with cancer, I’d be taken to a doctor’s private office, like Joe and practically every other patient that gets cancer on TV and Movies. There, sitting behind a mahogany desk, he would break the news to me and my wife, show me the x-rays and scans, point to the problem, outline treatment plans and try to boost my morale as I absorb the shock. Wow, what an imagination!
It wasn’t like the movies at all. Instead, it was a rapid series of small rooms, exam tables, scans, tubes, needles, probes and paperwork. It happened so quick and was so…so normal. I did have a doctor draw me a picture of what they were going to do. So, I give him a gold star for creativity.
I had a neuroendocrine tumor in the terminal ileum that had metastasized to several lymph nodes and the liver. That is “technically” Stage 4 cancer. Unfortunately, for many, Stage 4 is when cancer is so advanced that there is very little time for successful treatment. If I were in the movies, I would be whisked off to chemo and aggressive treatment and I would go on a quest to fulfill my “bucket list” and inspire people along the way.
Well, Stage 4 cancer with NETs can be quite different. The doctors didn’t say I was terminal. Instead, they said they wouldn’t be able to cure me and would focus on quality of life. The pathology reports showed that the NET cancer I had was slow growing. All the hustle and bustle that I experienced before my surgery now slowed way down. I was told I had plenty of time. In fact, the word “decades” was uttered. Maybe that was supposed to be a morale boost. For me though, it still put a time limit in my mind. So very Joe of me.
“So I’m not sick? Except for this terminal disease?” – Joe Banks.
Getting the news of NET cancer can be just as confusing as having a “brain cloud”. So, the thoughts that I had come and go are sort of like this……. Ok, I have cancer. People can die of cancer. That’s bad! But, this cancer is so slow growing that I may die of old age before the cancer would kill me. That’s good! But, wait I still have cancer. That’s bad. Cancer, cancer, that word just doesn’t go away. It affects everything. Not everything is cancer but everything is cancer. Errrr!
Here’s how silly it gets. When I go on a run/walk my nose runs. Always has. But now, honestly, every time I wipe my nose during a run I check to see if there’s blood. Why? Well, probably because on TV or Movies, if a person has cancer, they tend to randomly bleed from most any orifice. So, of course, since I have cancer I’m destined to eventually start bleeding from my nose, eyes, or ears. I told you it’s silly. Thanks a lot Marshal Stacker Pentecost.
Well, guess what? A person with cancer still gets sick from stuff that is not cancer. But, in the back of my mind there’s always that question. Is this feeling normal? With NETs there are several common symptoms. But, for the most part, everyone seems to be different. So, how do you know if a new ailment is related to NETs, getting older, babysitting or the burrito you found in the fridge?
“Brain cloud! I knew it. Well, I di- I didn’t know it, but – I knew it.” – Joe Banks.
In addition, finding out I had NET cancer hasn’t validated any of my previous ailments. NET cancer was not the cause of years of depression and anxiety. When I found out that NETs can produce serotonin, I tried to pin the recent increase in anxiety attacks to NETs. But, my doctor will not agree that they are related. This appears to be a case where not everything is cancer.
Also, NET cancer did not cause me to have a bad back and neck. When I had x-rays of my neck, I expected there to be little NET growths on the bone. There would be the reason for my chronic neck pain. But, Nope! Once again, not everything is cancer.
“You mean you were diagnosed with something called a brain cloud and didn’t ask for a second opinion?” – Patricia Graynamore
Over the past 6 months, according to my MRIs, I have developed fatty liver disease. The doctor is thinking it is NASH. Now, I realize, not everything is cancer. But, this may be different.
What baffles me is that my previous 3 MRIs say nothing of a fatty liver. However, since I started Sandostatin in 2015 the last 2 MRIs have shown first development and then progression of fatty liver disease. Is this related to Sandostatin treatment? Doctor says no. Pharmacist says no. However, I think the facts may speak differently. Have you had a similar experience? Please let me know.
“Do you think I feel good? Nobody feels good. After childhood, it’s a fact of life. I feel rotten. So what? I don’t let it bother me. I don’t let it interfere with my job.” – Frank Waturi.
I’ve had to adjust to knowing that just because I have NET cancer, not everything is cancer. However, having cancer has affected my life even though it has not advanced to the point of being life threatening at this time. At times I’ve tried to put it to the side and continue with life as if I had no medical issues. That is impossible, though. Every 4 weeks I get a nice little stab of reality in the behind. Every 6 months I’m poked and scanned because I have NET cancer. So, there is no time to forget or ignore it.
So, like I’m sure many of those suffering from NET cancer, I will just deal with it and try to live as normal as possible for as long as possible. Through it all, discovering that not everything is cancer, but yet…everything is cancer.
NOTE: If you are finding this blog while searching for information on Neuroendocrine Cancer, I hope you find my experiences useful and/or entertaining. But, my goal is to give a personal story and not any medical direction. Please go to http://www.carcinoid.org for a lot of excellent information and resources for new patients, caregivers and doctors.