scot hacker's foobar blog

Hard to believe it’s been a full year since May 2025, when I finished my 7-week round of chemo-radiation sessions for throat cancer. It’s traditional to bang a gong to celebrate the end of radiation treatment, but I was up for something more than the 10″ gong in the Kaiser radiology lab, and borrowed this beautiful gong from a local sound treatment specialist, and organised an outing to Albany Bulb. Amy shot this wonderful image of me celebrating the last day of radiation.

It’s been a wild ride since, grappling with an array of side effects and symptoms. Neuropathy that’s manifested as “stockings and gloves” – tingling in the hands and feet – slowly rising and then settling down over the past year. Loss of salivation and sense of taste – another one that’s come back somewhat over the past year, but not entirely. I still have a Xylimelt saliva-encouraging tablet in my mouth at all times. For a while, it seemed like I would be permanently down 30 pounds, but some of that weight has come back, for better and for worse.

And then there’s the late-arriving symptom that has been particularly problematic: Tinnitus in the left ear from radiation that swiped its way over the left side of my face every day for almost two months — sometimes the persistent ringing almost turns to howling, and it’s incredibly annoying. I know there’s literally nothing that can be done about tinnitus, and that visits to the doctors will only result in “coping strategies” (I’ve been down this road with it before) so I haven’t talked to the doc about this. I just live with it.

Another big one is not so much a symptom as it is a result – I lost a fair bit of muscle mass in my butt and thighs, and with it, lost some stamina while cycling. I just can’t do the distances and speeds I used to do. With diligence, I’m sure I could bring some of it back over time, but it’s going to take a lot of work, and honestly I’m feeling fine about shorter and less-frequent rides – distance cycling is so time consuming!

Other than that, it’s pretty much normal life again now. I’m back to working 3/4 time, leaving just enough time each day to work on my images and frames. And I still hike in local hills around 5 miles/day, before and after work – proud to say I never stopped my daily walks even through the thick of treatment. It feels like a life-long-habit that I intend to do forever, through several more dogs.

Every three months I go to see my oncologist, who does a visual check for recurrence of tumours by anaesthetising my nostril and pushing in a camera to look down from the top. So far, so good. No signs. And in the process I’ve learned my oncologist is both a snowboarder and a Deadhead, like me. Life is good.

The type of cancer I had was caused by the HPV virus. When I was young, there was no vaccine for it. Today, we’re incredibly fortunate that young people can be vaccinated for HPV, and need never risk contracting this sort of cancer. If you have teenage kids, please PLEASE vaccinate for HPV. Your future self will thank you.

Happy anniversary, me. Well done.

When my treatment ended in late May, the next question became “How can we be sure if we got it all?” The surprising answer was “There’s so much swelling during treatment, and it’s too easy to mistake swelling for tumors, so we have to wait three full months before doing another PET scan.”

That day finally came yesterday. Half an hour on my back in the giant scanner (this one silent, unlike the crazy noisy MRI) and then a 24-hour wait for analysis. Today I met with the head of oncological surgery at Kaiser for the analysis. Short version: All clear! No sign of any tumor remains in my head, neck, or throat, and all former tumors are thoroughly dead and gone (or withered to nothing).

It’s hard to describe what it felt like to get this news, after everything we’ve been through since last March when I was first diagnosed. Saying “I’m cancer free” makes me start to tear up a bit now, just like saying “I’ve got cancer” did six months ago.

I knew in advance that my P-16+ variant responds very well to chemo-radiation, and that my chances were very good for full recovery, but that glimmer of doubt always remained in the back of my mind, making me nervous that I could have been in for a series of recurring cancers or something. I know that not all cancer patients are nearly this lucky, and I feel incredibly grateful to be at this point.

I’ll have to visit the doctor every three months for the next year, and then every six months for several years after to be sure, but for now, it appears we are out of the woods. Unfortunately that’s not quite the case with my remaining symptoms:

• Foggy headed / issues with word recall
• Low red & white blood cell count, plus platelets = low energy, dizzy spells, etc.
• Weight loss (I’m still down 30 lbs, and having trouble putting any back on!)
• Cotton mouth due to nuked saliva glands (this will get somewhat better over time, but is going to be more or less permanent)
• Sense of taste still only restored to around 50%

But the doctor was optimistic about every single one of those as well, and in fact thought I was doing incredibly well on each of those five counts for being only at the three-month mark.

So… huzzah! I didn’t quite jump and click my heels on the way out of there, but felt like it.

I just want to thank everyone from the bottom of my heart for all of the love and support you’ve shown over the past six months. It’s been an incredible ride that I never foresaw myself, but I’m pretty much out the other side now, and incredibly grateful – to my family, to my extended circle of friends,  to medical science, and to at least one example of fantastic health care in the U.S. 

The feeding tube was essential for a period of about five weeks at the end of radiation, and for the few weeks after. But by July 3, I was once again able to get through a whole day on oral nutrition alone, without the need for tube feeding. The “deal” with my doctors was that if I could go for two whole weeks without using the feeding tube, I could lobby to have it removed.

My taste buds are still at around 50%, and eating food still takes a lot of work due to my reduced chewing surfaces and the lack of salivation, but I’ve been increasing the variety of inputs daily and am back to something resembling a “normal” diet (though I weirdly still don’t feel much attraction to meats and have been eating mostly vegetarian for months now). So I was super stoked to be able to return to the radiologist’s office today to have the feeding tube removed!

Good riddance. It feels like a fifth arm that’s been hanging out on my torso for the past month+ was just lifted away. It’s been a bit irritating the whole time, and I’m so looking forward to that healing up. Symbolically, it just feels like a big step on the journey.

The other development is around the mystery anemia I talked about in the last post. Technically, anemia is defined as a decrease in red blood cells, whereas what I’ve got is a decrease in red, white, and platelets, which is defined as cytopenia, not anemia. We’ve also been able to determine via more advanced blood tests that there is no shortage of iron or B12 in my system, which means there is no advantage to me taking any sort of supplements or vitamins.

If my blood counts get low enough, I could become a future candidate for a blood transfusion, but they currently are not, and are in fact moving in the right direction all on their own. The good news is that I am experiencing light-headedness less often and less intensely as days go by – I can feel myself getting better. Doctors now think that I am simply recovering from chemo more slowly than expected, but that there is nothing we need to do right now, except to do regular blood labs and to watch those counts creep up on their own. As long as they keep heading in the right direction, it’s all good.

So my remaining issues are:

• Cytopenia (getting better on its own)
• Diminished sense of taste (will probably mostly return within about a year)
• Dry mouth (salivary glands may never heal)

Hi everyone – it’s been a while, time for another update. A mix of great and not-so-great news this time. I had really expected to be fully on the mend and almost normal at this point in time, but unfortunately that’s not quite the case.

The good news is that the anticipated difficulty re-learning to swallow after being on the feeding tube has not really materialized – I have slowly been introducing oral food back into my diet, and while eating is a challenge in several ways (loss of taste, taking a long time to chew until swallow-able), throat pain is not one of them – I can swallow just fine! Since that’s often a major challenge for people after this kind of treatment, I was anticipating that it would be for me as well. But happily, I can swallow without almost any difficulty and I’m incredibly grateful for that.

My ongoing goal was to get off the feeding tube – two weeks of oral eating, and I could schedule it for removal. I’m happy to say that I’m now on day 4 of all-oral, no “feedbag”, which means I could have the tube removed as early as July 17.

On the other hand, a separate issue that I thought would be short-lived turns out to be ongoing, and is now a major thorn in my side, and that’s anemia. Both my red and white blood cell counts are quite low (hemoglobin too) and that (coupled with my old friend orthostatic hypotension) is resulting in me having a lot of dizziness, vertigo, and light-headedness when getting up from chairs or beds, or when changing the pace of exercise (e.g. going from a walk to a stair climb). It’s scary and very disruptive to my life. I was sent to the ER for a syncope workup, which showed no physical issues with my heart.

A second blood panel yesterday was focused on discovering whether my issue was related to a deficiency of iron or B12, i.e. whether it was nutrition-related. That would have been an “easy” path as I could have started taking supplements or shots, but unfortunately those tests showed negative for nutritional deficiencies. And it’s now been long enough since the end of chemotherapy that we can’t explain my anemia (I keep wanting to say amnesia) as a side-effect of chemo.

Which means that it’s a mystery and we don’t know what’s causing it. And that it’s hanging on and not going away far past the time when we would have expected side effects like this to have gone away.

After the second round of blood tests and consults with several docs on my cancer team, they’ve now recommended it be pushed over to my GP as something to be looked at from another angle. Hopefully appointments to start that investigation will start soon.

Whomp whomp (sad trombone sound)

Just an update to let everyone know where things are at with my recovery.

No news is good news, right? Sort of. My last day of chemo and radiation was May 28. I knew at that time to expect that the side effects of chemo and radiation would increase for a few weeks before they gradually got better, but as usual with this strange process, it was hard to know (or for doctors to predict) what that would look like exactly for me. Everyone is different, and reacts in different ways to the same treatments.

As you know, I had opted to have a feeding tube installed just before the end of radiation, as eating had become too difficult. The irony of course was that while I needed the tube to get enough nutrition, the larger goal was to return to eating normal food orally in order to get back on the path to normal. So in a way I had two goals working against one another.

Then another wrinkle crept in: Soon after the tube was installed, I started feeling a lot of irritation around the site. It got worse, I went to the doctor, and they treated me for infection. But once the course of antibiotics was done, the site didn’t quiet down – in fact, it started feeling more gnarly by the day, until every footstep created scratching, scraping discomfort of the skin at the tube’s stoma. I knew this was not right.

Continue reading “Holding Pattern”