I’m writing this post from a hospital bed. And I couldn’t be happier.
You hear folks say chemotherapy sucks, but until you go through it yourself, you don’t really know how bad it can be. It remains a popular activity only because it’s better than the alternative.
My first exposure to chemotherapy was with this contraption: a fluoroscope.
Every week, they used this machine to tap into my spine, extract 5 mg of fluid for analysis, and replace it with 5 mg of methotrexate. There was only a local anesthetic during the procedure and the hardest part was knowing that there was a needle, turned up to eleven, going into my back.
It was afterwards that things got dicey: the nerves in your spine float in a thecal sac filled with spinal fluid that acts as a kind of insulator. Since we were exchanging the fluids, it was easy for the levels to get out of balance and for the nerves to react.
The result were the worst headaches I’ve ever experienced. The good news is that the remedy was simple: to lie flat on my back to ease the pressure gravity was putting on my spine.
That was also the bad news: many days were spent lying prone and trying to avoid boredom. Watching shows and scrolling timelines just doesn’t cut it when that’s all you can do.
Thankfully, the spinal headaches subsided quickly when the six-week course of lumbar punctures finished at the end of January. But my body began to face a new challenge: chemotherapy infusions of Bendamustine and Rituximab.
Everyone experiences chemotherapy differently. Just as every body is different, so is the reaction to the chemicals that are killing the cancer.
The first effect I noticed was in my tastebuds: everything I put in my mouth had a slightly metalic taste, so my eating habits changed. My beloved morning coffee was replaced by tea, food needed a lot less salt, and I started eating a blander diet (cottage cheese with berries remains a favorite).
Some people experience nausea and other gastric issues: luckily, I avoided that. I also didn’t have any hair loss, but my normally thick and curly hair lost its body and became lifeless: an external expression of what was happening to me internally.
As someone who’s always been active and strong, the biggest overall effect of chemo was losing muscle mass and suffering from overall fatigue. It felt very strange to be weak.
I was on a 28 day cycle for my infusions: during the first week I got pumped full of chemicals and then spent three weeks letting my body process them. One of the things they gave me with the infusion on a Tuesday was a dose of steroids that gives the body a boost during the initial onslaught. But by the weekend, that wore off and I felt like shit. It usually took until the middle of the second week before I started feeling human again.
I didn’t lose my appetite, but I wasn’t eating more than normal. The problem was my metabolism was working overtime and my calorie intake didn’t adjust. I lost 50 pounds over the course of a couple of months and eventually got to the point where I was having five meals a day. Too bad it all tasted bad.
One thing that I did to fight my diminished capacity was a daily walk. Anyone who exercises regularly knows that there are always plenty of reasons to avoid it: you didn’t sleep well, you have an important project to finish, or you’re sore from a previous workout. When you’re doing chemo, add feeling like absolute shit to that list.
I still had nerve damage in my spine, so my “walk” was more like a shuffle. Thankfully my wife found some awesome walking sticks to aid with my balance. They are clearly labelled “Not A Medical Device” but they are my most important medical device.
My daily exercise was just like any gym workout: dread at the start, joy at the end. Sometimes there wasn’t much behind that joy: at my lowest point, a walk around the block on flat ground got my heart rate up to 160 bpm. Breathtaking, literally.
That low point was in March. In the week following my infusion, where I was already feeling like crap, I came down with a type of pneumonia that affects people with weakened immune systems. I had no strength and my blood oxygen level plummeted below 90%. Getting from the living room to the kitchen for a drink of water felt like running a marathon, and then my Apple Watch pinged to inform me that I was having an episode of atrial fibrillation. It was a lot and I honestly had thoughts of “is this how it ends?”
Thankfully, antibiotics battled the pneumonia quickly and the chemo effects subsided. My doctor offered to skip the next cycle of chemotherapy, but I decided to push on. There is only one way to be done with a thing.
Throughout all of the infusions, the nerve damage that occurred before the lymphoma discovery didn’t improve. As I said above, my gait and balance were severely compromised: going up and down stairs was particularly challenging. The tingling sensations on my backside and numbness near my abdomen became a bigger concern with each passing month. It wasn’t getting better and I feared it was a permanent condition.
I finished the last of my infusions in May and my body slowly started to recover. Food started tasting better, and my strength and stamina started to return. My daily walks got longer: first a quarter of a mile, then half a mile, then a mile, and then something fantastic happened.
At the end of a walk around our local state park, I went to grab something in the car glovebox. As I did this, I tilted my head forward and the back of my legs lit up with a feeling I had never felt. Something was changing in my spine: and after a couple of weeks it was clear that this was a sign that the nerves were fixing themselves.
Our guess is that the chemotherapy infusions, which attack white blood cells and other parts of the blood that aid in recovery, had retarded the healing in my nervous system. Now that my body had a chance to repair itself, it was.
I can now go up and down stairs without hanging on for dear life. I’m able to walk without aid, but I still like my walking sticks for longer outings since they let me push myself harder. I’ve also started working out in a gym with a trainer: I told him about my stair issues, and now he has me doing them backwards and by hopping on all fours. I am so happy to look like a doofus, and for the continued improvement I’m seeing with exercise.
My regained ability to walk and a stronger immune system allowed me to leave the house. My first night away from home was a short trip to Topanga Canyon to celebrate an August birthday:
After that successful trip, we took a short boat ride to have a nice lunch and look at some kelp. It felt so good to be able to do normal things again.
One lingering part of my life that hasn’t been reestablished is swimming. All the chemotherapy that has been put into my body has been through a port catheter: a small device under my skin that hooks directly into my carotid artery. Getting an infection there would be a very bad thing, and water increases that risk: be it from ocean water full of living organisms or a swimming pool that kids pee in.
With the current El Niño conditions, that’s been a hard thing: the water is warm and “interesting”. My new gym also has a beautiful Olympic-sized pool for lap swimming. I’m happy to be in this hospital bed doing a final stint of chemotherapy because when I’m done, the port is removed.
This last procedure is to make sure there is no lymphoma in my brain fluids: not a difficult or dangerous treatment and the side effects are minimal. But it does require close monitoring because of the high dosages involved.
In six weeks, I’ll be done and spend the winter in that heated pool so that I can finally swim in my beloved Pacific next summer. The buoys are still there, even though the high surf this summer knocked one out!
Last year was hard, and it got worse over time. This year has also been hard, but it’s gotten better with each passing month. For that I’m grateful.
I’m also grateful for my wife Lauren: it’s impossible to imagine making it through all of this without her help, support, and encouragement. The silver lining in all this strife is that it’s made our relationship much stronger. Thanks sweetie!
As with my previous account, there’s an unwanted coda. No matter how hard I try, there’s a complication at the happy ending!
I had typed up everything above as the doctors and nurses prepared me for the first dose of methotrexate. It takes a while for your blood’s pH level to reach a point where the treatment is safe, so I spent much of the day lying in bed, peeing into urine cups, reminiscing about my year, and typing.
Around 10:30 PM, the medication was in my brain and I was trying to wind down for the night (easier said than done when part of the regimen includes steroids). While scrolling through Tapestry, I noticed quite a few posts about a newly announced PHP vulnerability. This caught my attention because we use it for our blogs, an ad server, delivering Kickstarter rewards, and a bunch of other small things.
(This is the point where family that doesn’t understand what I do for a living continues to not understand what I do for a living.)
It quickly became apparent that this was a big deal and something that could allow an attacker access to our server. I had to shut things down before my brain shut down. Thank goodness the steroids held out.
After a couple of hours, I had blocked access to PHP processes in every nook & cranny of our server. After sending a quick message to our Slack explaining how everything was broken, I collapsed.
The next day started with a head and server that were barely working. Our server was out of LTS, so the first order of business was to get it back onto the latest version of Ubuntu using hospital WiFi. It was a good thing my heart rate and blood pressure were being closely monitored.
(Thank goodness for Lish, which proved to be immune to hospital IT shutting down my ssh connection to accept terms & conditions every few hours. There’s also a “I should have my head examined” joke in here somewhere.)
If you noticed that the Iconfactory sites were kinda broken last week, now you know why. It’s because I was kinda broken last week.
Now I’m finishing this post from a comfy chair on our deck. Typing into the latest version of WordPress and PHP. And I couldn’t be happier.
