scot hacker's foobar blog

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”

Keeping images to a minimum on this one because basically everything is gross. :)

There are sort of two distinct phases to dealing with this type throat cancer:

• The actual chemo-radiation phase (two months)
• The recovery from side effects of chemo-radiation

The most common and uncomfortable side effect is a called Mucositis , and it’s no picnic. It means that the mucous membranes inside throat structures are now thoroughly sunburned, and inflamed. The back of the throat, sides of the mouth, edges of the tongue, plus pretty much everywhere in the body that holds onto mucous that you’ve never even thought about is now producing either a strongly nauseating gag reflex, or thick ropy saliva like hagfish slime, which is impossible to wipe off, pick up, or cough up. SO not fun to deal with. Meanwhile, trying to swallow when your internal throat walls have turned into chalky and chafing is miserable.

Mucositis is such a drag that a majority of patients opt to have a feeding tube installed rather than try to eat with it. It’s a painful dilemma – right when you meed to be putting back all of the calories you’ve lost, and right when food has lost all taste and smell (making eating even less appealing), along comes mucositis to deliver a knockout.

Up until a few weeks ago, the goal was to avoid the feeding tube and the complications of surgery at all costs, and to do it the “organic” way by toughing it out. But as the effects of mucositis got worse, I was finding it harder to eat by the day, and was losing weight no matter what I tried. One more morning I just looked at Amy and said “I’m starving.”

We made the decision that day to call the Doctor and let him know we were opting in to the very thing we’d been trying to avoid all along. I scheduled the procedure for the morning after my “Gong Sound Bath” celebation.

I quickly realized this was not to be a trivial outpatient surgery. There was a full-size surgery team on hand, and I was put under “generalized” local anaesthesia, which means they can pretty much put you under or pull you back into waking consciousness on command (don’t worry, a friend had driven me to the hospital). All I remember fron the surgery itself is the old “missing time problem” – Twilight-Zone-style.

Continue reading “About that Feeding Tube (Fun with mucositis)”

Clinics and hospitals often provide a bell or gong to help patients celebrate the end of a course of chemo-radiation. Mine was no different, but after having seen Roger Waters going nuts on a big beautiful gong in Live at Pompeii with friends recently, I got it in my head that I wanted to celebrate with something more than a simple desktop gong.

I reached out to NextDoor to see if I could find a loaner gong, and ended up making contact with sound healer Valerie Devi at Sound Living. There’s a whole story to tell around that connection, but for now I just want to thank Valerie for helping me to open up a non-traditional aspect to my healing path. I’ll say more on this when I have a bit more energy.

Short version is that my final chemo treatment was delayed for a week when my white blood cell count dropped too far, which ended up placing my final chemo and final radiation treatments on May 27. Later that evening I gathered with Amy, Valerie, her man Mitch, and my friend Paul Porter at golden hour on the Albany Bulb. I said a few words about what it meant to have come this far and the work still to do, while Paul locked in with a tripod going for that perfect “Against the glow” shot and Amy walked around with my camera and got some spontaneous shots. I’ve collected some of the keepers here.

First, the “default” gong celebration available at the clinic, to mark my final day:

Later, looking for a more something more substantial celebration in the presence of friends and with a proper gong, at the Albany Bulb later that evening.

This is mostly my five-minute “I’m so glad to be alive” speech before the sound bath began.

More shots of the Sound Bath at the Bulb ceremony, by Paul and Amy.

It was a small gathering, but I was so grateful for the opportunity to mark this important middle passage – treatment may have ended that day, but I had plenty of warning that pain and discomfort – mostly due to mucositis – would continue to get worse for the next two weeks. Not only that, but I was going in for surgery the next morning to have a feeding tube installed after all. I know I know. More on that later.

Pain quotient has ramped up at least 2x in the past 48 hours, just like that. It no longer only hurts when I try to swallow, but full-time. Ironically, it did that over the weekend break, when I don’t even have radiation.

The medication goal is now two-fold:

1. To make eating possible
2. To make things bearable when I’m not eating

My diet is now fully liquid – I’m only eating Ensure and Boost. For a while I was still able to get down a bowl of Cream of Wheat with butter and banana each morning, but I couldn’t do a single bite of that yesterday. There are sunburns along both sides and the back of the tongue that are extremely sensitive to anything with the slightest bit of roughness to it.

The new regimen is:

• 20ml of Hydrococone to reduce pain in general (full body)
• 5ml of “Miracle Mouthwash” (Benzedrine and Lidocaine) to numb the throat structures.

I give those five minutes to settle in fully, then try to get down a 500-calorie Boost pretty much as quickly as possible. Four of those per day gets me to 2000 calories, which should be enough to avoid the feeding tube.

Because the Hydrocodone wears off after a few hours, I am awaked by a searing throat (like the Jolly Green Giant’s big leather boot is stomping on my throat) at around 2 or 3 a.m. and have to get up for another dose. Then I’m up for an hour and finally doze back off until morning. Such a blast.

I may end up being switched to morphine for the remainder of the treatment tomorrow – it has the advantage of not being mixed with Acetaminophen, and so its upper dosage is not limited. We’ll see what the doctor has to say at my Chemo session.

Feeling like I’ve aged 10 years in a couple of months. Over the past few days I’ve experienced the sort of profound chemo exhaustion that was promised all along, but has now fully sunk in. Last night I slept for 10 hours, was up for one hour to go to radiation this morning and do a quick dog walk, then slept for four more hours. Watched the tube for an hour then fell asleep for three more. It doesn’t even seem possible, but I’m still tired. Inexhaustible exhaustion.

It feels good to check the days off on the calendar. We’re well over halfway through now. Interesting to see this patch on my cheek where there once was hair, now has none. “A landing strip,” the doctor called it, but I believe that phrase has other meanings.