return to normalcy & subsiding of side effects

After getting the fantastic Remission news on Halloween 2024, I was ready for life to go back to normal in a hurry. And while in some ways normalcy followed quickly, the reality is that the body takes time to heal, and side effects don’t vanish overnight – some of them can even continue to persist years later.

The most pressing of the side effects I was eager to say goodbye to was the sorry state of my immune system following chemotherapy. My white blood cell counts remained stubbornly low for a few weeks after finishing treatment, too low to be able to safely return to many basic parts of everyday life like going to the office, the gym, crowded shops, travelling, etc. After 3 months of being socially distanced from the world, every week that went by without those white blood cell counts getting back to a healthy level felt excruciating. I also had one of my close friend’s weddings in Barcelona ~5 weeks post-chemotherapy, and I was hoping against hope that I could still make it. Almost like clockwork – the day of my flight to Barcelona I got an email with that week’s blood values, and the green light from the doctor that I could travel and return to normal life. What a way to return to socializing – with some of my closest friends at a celebration of life and love. And – perhaps because “YOLO” seemed all the more pertinent as life advice – after Barcelona we booked a last minute trip to – of all places – Senegal. Perhaps not the relaxing destination most people would envision for a post-cancer getaway – but we were craving some adventure, and we got it. What an amazing country and it felt great to be back traveling.

The next side effect I was in a hurry to bid adieu to was – my new hairdo. While many people were very sweet in saying that I looked good bald, I am a diva about my hair and wanted my locks back ASAP. Maybe even more pressing hair growth wise was to have my eyebrows fill back in – by the end of the treatment they had gotten pretty sparse, so the stereotypical “cancer patient” look was in full effect. Beyond pure vanity, the lack of hair also meant I had to address my cancer diagnosis with pretty much everyone I encountered who didn’t know about my situation. And stepping back into face-to-face settings like work meetings meant debuting the cancer patient look to a broader audience which was daunting.

As mentioned, everyone was super sweet, and it anyways only took about 4 weeks before the first signs of peach fuzz started appearing on the top of my head, and for my eyebrows to be back to more or less normal. I was told to let the peach fuzz grow a little – it’s really truly like soft baby hair – and then shave it off to stimulate growth of your proper new hair. And I use the word “new” there very intentionally, because in my case (and its well documented/common) my hair grew back a very different texture. All my life I’ve had wiry straight hair, on account of being half Chinese. But, strangely enough, my hair grew back- CURLY! Such an interesting way for the body to react. The curls persist, even approx. a year later. As I had gotten used to so many different hairstyles – a few months later I again invoked the YOLO mentality again and did something I’d wanted to do for a while – I went full platinum blonde scalp bleach. I liked to joke afterwards that my hair just “magically grew back blonde” after cancer 😉

Another side effect which was relatively quick to subside was my tinnitus (ringing in the ears). Within a week or two of chemo ending, I had clear hearing. Conversely though, the hand & foot syndrome (numb feeling in my hands and feet) persisted a little longer. It was at least 2-3 months before it was no longer noticeable.

There are many other side effects which can persist and may be monitored over the longer term (including some which may only appear years later) but I will only comment on three here.

The first is lung function. If you read my posts about the chemo side effects, reduced lung capacity and overall fitness was a theme. BEP chemotherapy is particularly brutal on the lungs – it’s the reason why Lance Armstrong switched to a different chemo regiment partway through his program. While my lungs tested within a normal range during and after chemo, it was clear my fitness had taken a hit whenever I played sports or went for a run. The initial few months were pretty rough, especially the first time I got back out playing ice hockey. I had (perhaps foolishly) circled on the calendar an ice hockey game just 2 weeks after finishing chemo – before I was even considered in remission. But I was dying for some normalcy and to test myself, so I went for it. It meant I had to get changed in my own separate locker room since my immune system wasn’t back up and running yet, i.e. not conducive to changing and showering in a cramped space with a bunch of sweaty dudes. When I did get back out on the ice, it was such an incredible feeling... but boy oh boy did I feel it in the legs and lungs.

Over time, bit by bit I did feel improvement. The most noticeable improvement came when I started training for my first ever trail running race, slated for 11 months after finishing chemo. Having to work up towards a big goal, with a training plan that added runs with incremental distance and elevation gain each week was an amazing way to feel and tangibly see the improvement to my lungs and fitness week after week. I can say that as of the latest update, roughly 12 months out from chemo, I feel like my lungs are close to their old selves again. There may be long-term scarring, but for now I'm happy with where I'm at.

The second long-term effect for me is skin discoloration, or what the internet refers to as “hyperpigmentation”. This one is not universal and was a surprise for my oncologist, but at least Google suggests it’s not unheard of. Effectively, there have been a few parts of my body which darkened after the treatment, and which get especially dark after being out in the sun. Maybe “hypertan” is a more apt term. It seems that the hyperpigmentation shows up in parts of my body where the skin was tightly covered or under pressure while I received infusions. For example – the back of my neck where the neckpillow was touching, or – as you can see below, the area of my chest where my port catheter was bandaged over each time I was hooked up to a drip. It’s kind of a funny look, because the bandage was a perfect square – and thus so is the discoloration. The internet says it’s possible this discoloration may go away, but also it’s possible that it will be there permanently.

The last one, and it’s a big one for me, is fertility. BEP chemo can have a drastic effect on a man’s fertility, and it absolutely did for me. For those reading this who might be thinking – well duh, you only have 50% capacity on account of having lost one testicle! That’s not quite right – as described in my pre-surgery post, the testicles have built in redundancy, so you only need one! Depending on the resource you consult – the internet, fertility doc, etc., fertility should theoretically recover after 6 months – 2 years. Roughly 9 months after chemo I had a sperm test, and the results were not good. My sperm count had dropped almost 99% vs. my pre-chemo sample. Given the timeline there's still hope for me and a subsequent test saw a slight uptick in results, but in the meantime my wife and I will need to pursue other options with the help of our fertility doctor. While it’s not how we envisioned conceiving for the first time, we are very grateful such options exist and that we are lucky enough to have access to them.