scot hacker's foobar blog

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.

As a person who consumes pretty much zero daily medicines or supplements of any kind, it’s been kind of crazy coming to terms with all of the pills, powders, and potions that have become part of my new routine. Here’s a quick tour of what I’m working with and why. Sorry for sort-of whacky pics with found brass birds.

Anti-Nausea

The chemo drugs are super-nauseating, which works diametrically against the goal of consuming more calories than normal to combat my hypermetabolic state. A full bag of Zofran is dripped into my system before the Cisplatin main event, which takes care of me on Wednesdays. For the rest of the days, I need to switch between these three, depending on how many days since the last drip, whether I need slow- or fast-action, and how much constipational side effect I’m willing to deal with. Hence this fruit bowl of Zofran, Compazine, and Decadron.

Miracle Mouthwash

A blend of Lidocaine and Benadryl, I gargle 5ml of this stuff before every attempt to eat, then slowly swallow what remains. The goal is to completely numb the mouth, back of tongue, and throat, to alleviate the pain of swallowing, so that I can get some food down. It does a remarkable job, hence its nickname “Miracle Mouthwash.” Even more effective in combination with the Hydrocodone.

Continue reading “Meet My Meds”

The type of cancer I have – Squamous Cell Carcinoma – occurs when the HPV virus that most of us carry in dormant mode for most of our lives, decides for whatever reason to go nuts and mutate.

When I was a kid in the 70s, there was no vaccine for HPV. If there had been, and if I had received it, I would not be fighting an HPV-based cancer today. Today, a vaccine exists, and is remarkably effective at preventing HPV cells from mutating into cancer.

Not only is it incredibly effective with the usual two doses, but it now appears to be very effective even with a single dose, which gives the world an even better chance of vaccinating teens around the world with an effective preventative. From the journal STAT:

A clinical trial run by the National Cancer Institute seems to confirm that a single dose of the vaccine used to prevent infection with the human papilloma virus is just as effective as two — and, therefore, also helps to prevent cancer. The result could transform efforts to reach the three-quarters of children globally who should receive the vaccines but don’t. The shots prevent cervical cancer and also anal, penile, and some head-and-neck cancers. Worldwide, 350,000 women die from cervical cancer, the most common HPV cancer.

Please don’t hesitate – get your teens vaccinated for HPV.