Whew, what a year 2020 has been, huh? COVID, politics, social distancing, half of Australia burning down, face masks, shortages, aaaauuugh! Still, the competitive side of me wants to say that I've probably had a worse year than you. I got cancer. It's a relapse of Non-Hodgkins Lymphoma.
So this post is a bit of a side trip from my usual fitness topics. Feel free to skip this one; you won't hurt my feelings, I promise. But if you know someone who's going through a medical crisis, especially cancer, I'm hoping this post will help give them a little boost. Please share.
Crappy Holidays
Less than a week before Thanksgiving last year, I went to my doctor about bad headaches I'd been having. I thought they were migraines, but she advised me to get a CT scan. I didn't want to, but my wife practically dragged my by the ear to the emergency room. Thank God she did, because they found a mass that turned out to be a relapse of the lymphoma I'd had 7 years before. Only this time, instead of being in my armpits and groin, the cancer had decided to grow in my brain. It's called Lymphoma of the Central Nervous System, or CNS Lymphoma.
LESSON #1: If your loved one thinks you need medical attention, listen to them. It might be nothing, or they might save your life.
A couple weeks later my oncologist gave me the diagnosis, and a colossal bombshell. He assured me that there were no treatments for this kind of cancer in the brain, because the human body is really good at keeping chemicals like chemotherapy out of the brain. Any treatments I got would have brutal side effects and would only give me a couple extra months of life. I had maybe 6 months, and those would be months of misery. Without saying so directly, his message was crystal clear: I might as well just go straight to hospice.
My life was suddenly filled with last-times and never-agains. I'd never get to lift weights again. This might be the last time I'd ever eat pizza. I'd never see that friend again. I'd never get to retire to Washington, like my wife and I had dreamed. My last Christmas...but why bother with Christmas gifts? They would just be more crap my wife would have to deal with when I was dead.
My wife and in-laws and parents urged me to get a second opinion. With money from our savings plus money scrounged up from loved ones, I paid out-of-pocket to see an oncologist at a well-known cancer hospital. He assured me that yes, of course there were treatments that could get through to the brain. He laid out the typical course of treatment for someone with my condition. The odds weren't great. But they weren't zero. Hospice was not necessary at this time.
I didn't end up getting treated by that particular doctor because he wasn't in my insurance network, but the hope he gave me was well worth the expense.
LESSON #2: Always get a second opinion. Always.
The Bad and the Not-So-Bad
That January I started on a total of 14 rounds of chemotherapy. Because they were putting me on heavy-duty chemo, I had to check in to the hospital for four or five days for each treatment, and I'd get to spend a little more than a week at home before checking back in again. I'm just going to give you a quick summary of those months in and out of the hospital. Nausea? Almost none. Fatigue? Lots, but each day home from the hospital was usually better. Other physical symptoms? Pretty much none. Depression? Lots at first, but medication helped a lot, and I am incredibly fortunate that I have lots of friends and family in my corner.
Every person is different, and their body doesn't respond to chemo exactly the same way as anyone else's. Also, year by year, doctors are getting better at managing side effects like pain and nausea. I can't promise you a rose garden, but take heart that you might get lucky.
LESSON #3: If you're about to start chemo, don't panic. Your experience isn't going to be fun, but it might not be as bad as you've heard, especially if you've heard stories from years ago.
Truthfully, the hardest part of chemo for me was the red tape. Every single appointment, every single treatment, every single hospital visit had to be approved through this complex, secretive, cryptic process of insurance authorization that had to be passed, like, 6 times from one office to another. Every person at every step was genuinely a good person who really wanted to help, but one forgetful moment, one misplaced piece of paper, one typo, would bring everything to a screeching halt.
The doctors, nurses, and hospital staff are true superheroes as far as I'm concerned, but there's one more person who deserves some space on that pedestal: my insurance case manager. She is a miracle worker, and many times my savior. My oncologist and several other people urged me to get one, which I did by requesting that my primary care physician refer me for one. She has been a miracle. She keeps her eye on things, and if she hasn't heard from the appropriate person in the appropriate amount of time, she knows who to call and what to say. I still have to be constantly on the alert, but as long as I keep in frequent contact with her, she makes sure $#!? gets done.
LESSON #4: In a medical crisis, you need advocates. Recruit family and friends, but also request a case manager or patient advocate or whatever your insurance company calls them.
Where Things Stand Now
My last MRI scan was negative. They can't find the tumor anymore. Hallelujah! That was incredibly good news, because there are no guarantees with cancer treatment. The thing is, my cancer is well known for hiding itself in the bone marrow, then jumping out later to start the whole tumor thing all over again. To improve my chances of the cancer not coming back, I will need to get a stem cell transplant (a.k.a. bone marrow transplant).
I just met with my transplant doctor. There's no surgery, just some mega chemo and a long recovery process while I re-grow my immune system. The doctor told me I'm likely to have more side effects and the recovery process is likely to be months. But she also told me the chances of long-term remission for someone in my specific situation are better than even. Those odds are better than I'd originally been told. I'll take it.
LESSON #5: Think carefully about asking your doctor or the internet to tell you the odds for survival. Those statistics probably include people who were already in very poor health and people older than you, even if you're pretty...uh... mature. You are not the statistics, you are you.
Thanks for Reading
Next post, it's back to fitness stuff. But I'll write again later about what it's like to get a bone marrow/stem cell transplant, in case anyone in your life is facing one.
Go hug someone.
The Friendly Lifter