Mathematically, it wasn’t a good ratio of days spend suffering symptoms and side effects to healthy days, and I found that depressing. It may be accurate, but it’s not a helpful way to look at the experience of living with cancer.
I am not in good health today, having spent the previous three days getting three infusions of chemotherapy drugs. But let’s back up a bit. Prior to chemotherapy, during those 200 days of relative health, I was on about 8 drugs to control my cancer as well as manage more sundry things such as cholesterol. With yet another cancer diagnosis and the start of more chemotherapy, that number has zoomed to 20 or more this week.
That number includes an immunotherapy drug, two chemotherapy drugs, and a handful of drugs to control the side effects of those drugs such as the anti-nausea medicine Zofran. Drugs like Zofran didn’t exist decades ago in the early days of chemotherapy, and many patients would vomit to the point of needing hospitalization. I’ve only suffered periods of queasiness of perhaps an hour or two between doses.
Of course, Zofran causes constipation, so add Senokot to the list to keep me moving. Now add Imodium because the chemo drugs eventually cause diarrhea, and that happened a bit earlier than expected this cycle. It gets a bit messy when I mis-time the changeover. It’s also one of the many reasons I’m very happy to be on disability leave and not trying to manage such things in an office environment. How some people work through chemo and keep their cancer a secret I’ll never know.
Here’s another great drug they’ve given me: Decadron. This is a powerful steroid. The doses I’ve been given over the last three days are the equivalent to almost 300 mg of Prednisone. It also helps with nausea, but also suppresses any immune response to the chemo drugs and relieves pain. I’ve been pain free without steroids since Monday morning. Side effects include improved mood and energy, which means I’m able to get off the couch and exercise a bit.
Exercise during chemo is hugely important. Emerging evidence is showing that exercise can make tumors more responsive to treatment. I’ve gone for at least a walk every day this week. Some have included short bits of jogging. Yesterday I even spent about 10 minutes tossing a frisbee around with a friend, including a few short sprints to make a catch. It felt awesome because after my original diagnosis I couldn’t move like this due to too much bone and joint pain.
So despite the ridiculous amount of chemistry going into my body, I’m out getting exercise which will help fight my cancers instead of sitting in a hospital room vomiting. In this case, better living through chemistry is a real thing! I am not an super hero, though I sometimes portray one in this blog. Mostly, I’m a guy that had some fitness prior to chemotherapy and have benefitted from both that and advances in cancer treatment.
That said, I do spend a lot of time resting on the couch and binging Netflix when not playing games on my tablet. Later today the support medicines will start wearing off as the collateral damage from the chemotherapy builds, and I’ll go through several days where I’ll be mostly offline to put it politely. By the end of the weekend the worst of that should be over.
After that, I’ll start to feel better but my immune system will be decimated. This means trying to avoid crowds and sick people. What would normally be a routine infection for a healthy person can result in hospitalizations and even death during chemotherapy. I don’t just worry about coronavirus, I worry about every virus and bacteria.
With luck, the immune system will recover just in time to start the next cycle on schedule. It didn’t fully recover to normal levels after the first cycle, but the oncologist deemed it more than good enough to continue with treatment. This is a distinct difference from the chemotherapy I went through last year. That was a different drug which decimated my immune system earlier in the cycle, allowing time for it to recover to above normal levels before the next cycle.
This latest diagnosis caught me completely by surprise. The frequent testing was supposed to be an early warning system for the return of cancer, but my new cancer is a type that can’t be detected in blood tests. I’m fighting cancer again much sooner than I was expecting. I was hoping to live in partial remission progressing to complete remission over several years. I only got six months. Technically I’m still in remission for my other cancers, as my oncologist considers this a third and separate cancer diagnosis. I haven’t figured out if that detail makes me feel better or worse.
Weight loss was a problem in the first cycle of this chemo. I had been trying to eat healthier to keep the cancer away, but that goes out the window during chemo. In addition to the obvious hair loss, chemo is also damaging my digestive system and lungs. Food doesn’t taste as good and I don’t absorb nutrition as well. Raw fruits and vegetables are not only hard to digest but can introduce bacteria that are an additional challenge for a compromised immune system.
Between the weight loss and depression over my diagnosis, I went on what could be called a sausage party (to misuse a slang term). Sausage in my omelettes, sausage on pizza, sausage and peppers on pasta. I like sausage like many people like bacon, and had all but stopped eating it in the past year. Now I’m having it every few days. It’s tasty, low fiber, and calorie dense.
In the context of chemo, this isn’t entirely a bad thing. Weight loss causes all sorts of problems such as loss of lean mass and can further compromise immune function. My mantra has been to obtain a healthy weight first, then worry about eating healthy food second. Of course, I’m one of the rare people trying to gain weight, not lose weight.
And now for the happy ending to this post (again, misusing a slang term). There are signs that chemotherapy is working very well. All that excruciatingly painful urination I blogged about recently? Mostly gone. What pain is left is probably due to the presence of the stent and is entirely tolerable. My bladder capacity has also increased allowing me to sleep for several hours between bathroom trips, which for prostate cancer patients is a huge deal.
Such signs of progress have greatly lifted my mood. While my prostate cancer diagnoses have been extremely bad, my responses to treatment have generally been extremely good. I now have concrete reasons to hope that pattern is repeating again. Hope may not cure cancer but it certainly improves quality of life.
Hope is why I’ll be cutting back on my sausage intake again, if not immediately then at least in the not too distant future after my weight is stable. It’s what gets me out and exercising. These are all things that science is beginning to show helps with cancer survival.
Immunotherapy is another reason to hope. It frequently doesn’t work well, but when it does it produces spectacular results. I’m talking to more and more patients who have been on it for years, have clean scans, and are eventually getting off of all cancer treatment. We advanced cancer patients are careful never to use the word “cured”, and there will always be lifelong consequences to treatment. But the thought of no longer being dependent on some obscenely expensive pharmaceutical to merely stay alive is a huge thing to look forward too.
No need to worry about the drug companies, they’ll make a tidy profit off me in the process and the cancer patients that follow me.
Treatment appears to be working, I’m not having any life-threating side effects, and spring is coming. Things will get worse before they get better as the side effects build with each cycle, but there is hope. By summertime I should be in the process of getting back to good health, and there is every possibility that I’ll greatly benefit from current and soon to come advances in cancer treatment. Immunotherapy should help fight all my cancers. Complete remission from three cancers is still a possibility. That and signs of progress (and the steroids) are helping lift my mood.
Please remind me of this during the dark days to come this weekend as the side effects consume me.
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