Paul was experiencing pains in his stomach that he thought was appendicitis but turned out to be a neuroendocrine tumor in his ilium. A martial arts expert all his life, he’s had difficulty dealing with an opponent that he cannot physically fight.
I had woken up with an upset stomach in the right lower quadrant—I thought it was my appendix—which intensified during the day. I went to the ER and the doctor said I showed signs consistent with appendicitis, so they gave me a CT scan to be sure. The scan showed that my appendix looked fine, but the doctor asked me how long I’d had a tumor in my ilium. My wife said my response sounded like Morse code, I was just stuttering. I had no symptoms other than a little constipation and diarrhea. They gave me a laparoscopic biopsy the next day, which showed a whole section of the ilium was dead and collapsed on itself.
The tumor came up partially cancer. The ER doctors introduced me to an oncologist who specialized in leukemia and knew nothing about this type of tumor, but continued to monitor it. He said if surgery wasn’t curative, then I’d have to find another doctor. For three years I was mostly OK. I had some episodes of diarrhea but was able to go back to work until the company ultimately closed. While I was on unemployment, the symptoms came back: sweats, flushing, severe pain in my abdomen, so I went back to the doctor. Blood tests showed metastases in the liver, spleen, and pancreas. The doctor referred me to the clinic at the cancer center nearby and put me in a trial for a targeted therapy that delivers radiation right to the cancer cells.
I have degrees in science and health, and was a pharmacist for years. That’s enough medical training so I can read most of the literature and understand it, but when they told me I have a carcinoid tumor, a type of neuroendocrine cancer, I said who? Never heard of it. It was all way over my head.
Hardwired for Concern
After 16 weeks of treatments, my hip dislocated and femur fractured. It was a tough rehab; I was a black belt for years, so I don’t take orders to stay in bed easily. But now I’m very limited in what I can do. Because of the cancer, my bones have thinned out. It’s one reason why my hip blew. I had also suffered a total dislocation of the right knee a long time ago, so now my left hip has steel rods, my right knee, titanium.
Colon cancer runs rampant on both sides of my family and I’ve been told that I have a “cancer bull’s-eye” on my back, so I’ve been getting colonoscopies since I’m 18. No one looked at the site where the tumor was. They think the tumor was growing for about three years, but didn’t think it was colon cancer. The initial invasion was probably in the liver, spleen, or pancreas, and my diabetes is probably related.
There’s no direct medication to treat this cancer. I take pancreatic and digestive enzymes, insulin, BP medication, calcium, vitamin D, and have a deep injection every four weeks. I also have a daily subcutaneous injection to help control symptoms. There is a tremendous depression that goes along with this, for which I’m taking antidepressants. Part of the depression comes from the alteration of my lifestyle, but part is from the chemical imbalance of the disease. It messes with your hormones. I was depressed when I was first diagnosed and had surgery; I’ve had enough relatives die of cancer and am hardwired to think that cancer equals death. Intellectually I know that is not true, but emotionally…. So, when I’m 63 and already diagnosed with cancer, it makes me very nervous.
Getting Old or Getting Stupid
I’ve had some cognitive changes with the disease and treatment and am not as sharp as I used to be. Now I struggle to remember what medicine I’m taking and what they are for. I struggle with karate language, which has been part of my language since I was nine years old. My students laugh at me now, “sensei, you’re getting old,” but I say “no, just getting stupid.” Abdominal pain, bone thinning, and diarrhea have taken the sport away from me altogether, as I can’t take a fall. I’ve been limited to standing with a student and talking them through a move; it’s like trying to explain how to carve a turkey without being able to demonstrate.
Cancer also put a strain on my relationship. My wife worked from the house and is a caregiver: she took care of her dad and aunt, who both passed away recently. When I could no longer help her, she moved them to nursing homes. She said that this changes nothing between us, but it was a tremendous burden on her. Even two years ago, I did most of the cooking, but now, eating isn’t something I like to do because eating equals cramps, so I have little appetite and am pretty emaciated. On the days I can’t eat, I force myself to have something, try to get some protein. If I go out, I’m limited to staying within so many blocks of my house and still have to know where the public bathrooms are, or know if there’s an owner who will let me in.
For the last few years the depression has really affected me. I’m not currently working and feel the loss of being able to physically do things. There are days where I get into my chair in the den and don’t move other than to run to the bathroom; I don’t leave the house, don’t go downstairs, don’t talk to people. I screen my calls and if I’m not in the mood, I don’t take it. Thank goodness for cable. And on the really bad days, my dog helps me get through. She’s insane, a chihuahua terroir mix, but wonderful. She doesn’t realize she’s tiny and will bark aggressively at a shepherd or boxer that could make a snack out of her. She’s a fighter like me, and very sympathetic to me. When she knows I’m having a really bad day, she will just come and sit on my stomach.
Beyond the Limit
I’m at the point now where this is a screw-up-your-lifestyle disease more than anything else. Eventually, it does so much damage that you die, but for now, it just screws up your life. Cancer changed my lifestyle to the nth degree. I can’t take long trips because I’m going to need to use the bathroom. It’s scary to visit the radiologist; I have several spots, like beginning-stage cancers. Most of them fade away, but not all. I’m nervous about what the next CT scan will show, will it give more explanation as to why the levels are up? It could be good news, but I’m nervous about it, as it could mean tumors are growing.
I always thought I was going to be the lucky one who dodges cancer. But there’s nothing I can grab and fight, or overcome by pushing my body to the limit. I am beyond the limit. I’ve had nine operations on my knee, before the replacement, so I knew how to prep and rehab. But cancer is nothing like that, you can’t prep for it, its not like there are muscles you can train. I keep calling my brother to get checked, he now thinks he’s invincible, like cancer is something that happens to someone else.
It’s surprising how fast it changes everything, how fast-changing it is, there’s no “yesterday is like today, is like tomorrow.” Every day is its own; it’s so unpredictable.