Made it again!

Today is my birthday!

Normally, if there is a day in the year when I celebrate my continued survival, it’s Thanksgiving, because of the timing of my lymphoma diagnosis in 1981, and the powerful memory I have of going to my grandparents’ traditional Thanksgiving dinner and wondering if it would be my last.

This year, though, I’m feeling an extra pride and sense of accomplishment at reaching my birthday. Completing another trip around the sun isn’t always easy, and once again I’ve proven to be a pretty damn durable man. Heh.

Kimberly reminds me that today is six months since the biopsy at the start of this adventure. Six months. It seems like both too short and too long a time. No wonder I’m feeling extra proud to have made it back to October 5 this year.

In what I freely acknowledge is a sign that I am way too nerdy, I started my celebration last night by reconfiguring our home wi-fi network using the new Apple Time Capsule I’d bought myself as a sort-of present.

I suggest no one try to read any deeper meaning into the fact that I bought myself a device designed to protect one from calamity (by doing automatic over-the-air computer backups). And I’m sure it’s just coincidence that the same Apple order also included the extended warranty AppleCare coverage for my laptop.

Sure, armchair psychologists might think there is some significance in my preparing for disastrous system failures as I approached my birthday.  And they might not be entirely wrong. But those who know I had the solid-state drive on my laptop completely fail in July might wonder what’s taken me so long. Life is complicated and interpretation is tricky.

Anyway, other plans for my birthday are sure to destroy any image of me as a dynamic and exciting fellow, should that have mistakenly lingered somewhere. The radio antenna on my car got bent recently, so I’m planning on spending a little while swapping in the new part I ordered to replace it. Then, we’re off for a drive, to watch the odometer roll over to 100,000 miles in our 1997 Saab.

Yup, Mr. Excitement, me.

All right, it’s not quite so totally boring. We are going out to visit the farm that does our CSA, giving us a chance to be out in the country on what is turning out to be a lovely, sunny Fall day, and chat with the over-educated young couple who own the farm.

In other news… eggs are back! For some time, my tastebuds had been zapped in a way that meant I found the taste of eggs strangely off-putting. Which is ironic, given that we keep chickens, and eggs used to be a staple in my diet. A few days ago I tried them again, and they once more taste good! Yay! Ironically, our chickens are now molting, and egg production has plummeted. (I know, right?)

More patient updates: I’ve now gone about a month without using my PEG tube for nutrition. That’s a good thing, though it does require attention on my part to make sure I eat enough to keep my weight stable. My healed mouth tissues are still sensitive, both in taste and physically, and even a meal of bland, soft food can leave my mouth feeling sore for a while. Like so much else, it’s improving, but slowly. (In the meantime, I still have the PEG tube, which I keep in good shape and flush regularly, just in case.)

Since the last post, I’ve had another follow-up appointment with Dr. Baik, who was sufficiently satisfied with my progress that I’m now done with the medical oncology part of my treatment coverage.

And, we now have a date for my PET scan. The appointment will be November 4, and we’ll see Dr. Liao later that same day.

OK. The sun is out, and I’m thinking it’s time for a birthday doughnut at Top Pot! I gotta  go. Kimberly’s waiting to take me out.
Happy Birthday to me,
Happy Birthday to me,
Happy Birthday dear me-eee,
Happy Birthday to me.

Door #3.

Remember in my post about the scan that I was writing about how they’re hard to interpret and don’t come with special color coding on abnormal tissue that clearly indicates “radiation scarring” or “cancer?”

You may also recall me writing that I really hoped that we don’t end up with that sort of ambiguous CT scan, and how I really wanted to know something definite today.

Yeah. Well.

The radiologist reading the scan pronounced it “stable”, meaning he didn’t see much change between my latest scan and my pre-treatment one. Dr. Liao, with the benefit of having looked at the actual patient, read it as showing some improvement, particularly on the surface of the tissue inside the mouth. But in the deeper tissue there is something that shows up on the scan, though we can’t know exactly what it is. (My untrained eyes looked at the scan and saw that even that abnormality in the deeper tissue seemed narrower, presumably a change for the better, but I have no idea what I was really looking at.)

Before reviewing the scan results with us, Dr. Liao did a thorough physical exam of my head and neck, and said that he saw clear improvement. The surface seems very smooth and looks good, and when probed with his finger seems soft. The rest of my mouth is healing up well from the radiation, and the skin on my face and neck looks good. He said the small puffy pouch below my jaw on the right was probably lymphedema, and we’ll get some training on how to massage that to help it go away. All in all, the clinical signs look good. Nothing looks worse, and all the stuff he can see and touch seems better.

So what do we do about this inconclusive CT? Well, a PET scan would be able to show us if there was metabolic activity as opposed to just scarring. And we could compare it to the one I had before treatment, on which the tumor is a visible bright spot. (It’s so obvious, even to the untrained eye, that Dr. Liao joked it was like “Oncology for Dummies”.) We’ll get a PET scan!

Only it’s too soon to do a PET scan, since I am still healing, which would also light up on the scan. So I’ll get a PET scan in two months, and meet back with Dr. Liao, and Dr. Futran, who’ll be monitoring my long-term care, at that point.

Oh. Umm…OK.


Since we left the appointment, the “calm, rational adult” part of my brain has been reviewing all the good news. First, there is a clear absence of bad news. No sign whatsoever that I am worse. That’s very good. Second, a highly trained professional has examined me physically, and was very pleased by what he saw. The clinical signs are good. Third, CT scans at this point are often inconclusive. Though we and Dr. Liao were hoping for one with clear interpretation, it wasn’t guaranteed, particularly in a patient with my history. (There has been a bunch of messing about and scarring of tissues in that area already.)

All the actual news we got today was good. There just wasn’t enough of it.

Which is why Kimberly and I both left the building feeling badly. Both of us have been so keyed up about this appointment, and while we are both really happy we didn’t get bad news, what we wanted was unadulterated, complete good news. And this doesn’t feel like that.

For months now I’ve been believing this treatment was going to work, and willing myself to sustain that belief while we really clobbered my body in serious ways. I’m really, really ready to go from believing that it WILL work to getting the proof that it DID work. I want to feel like we’re done (modulo the recuperation and the lasting side effects and the small possibility of recurrence, of course). And despite today’s good news, I don’t feel that.

I guess we’ll know more in two months.

The Wait.

(I am mightily resisting making a bad musical pun right now.)

You know you are a high-mileage patient when you are ecstatic that the IV for your CT scan only took one needle stick. (I can’t remember the last time that happened. Three is average. Seven is not unheard of.) The scan on Friday went quickly and very smoothly. (I’m not reading any meaning into that. No. I am not. Not.)

One way to keep from thinking about Impending Big News is to focus on the mundane. I’ve been keeping busy, with work, and with household tasks. On Saturday I gave the chicken coop the first full cleaning it’s had in months, moving a bunch of well-used bedding into the first stage of our composting process. I’m looking forward to next summer’s supply of rich high-nitrogen compost. It wasn’t much later before I was really feeling my back and shoulder muscles stiffening and tightening up. Still, it’s a ‘good kind of  tired’.

I was eager to get the coop taken care of yesterday because today will be no day for working outside. The seasons are definitely changing here in Seattle, and today storms will be moving through the area. This morning has dawned dim, foggy and damp. There is a black raven perched on the wire outside the window. I hear a mournful foghorn and occassional distant thunder. (I’m not going to be reading any meaning into that, either. No. I am not. Not.)

The sense of impending winter makes me even more satisfied with two other small projects completed yesterday. I replaced a broken light fixture in our basement, and I swapped out a broken switch in my bedside lamp. The shorter days and the return of the rain have me subconsciously seeking the missing light.

Yesterday wrapped up with a good exercise walk just before sunset. As we often do, Kimberly and I walked over to the neighborhood community garden. There Kimberly has a small plot in which she grows things like tomatoes and tomatillos that need the full sun our yard does not provide. Her tomatillo plants have been thriving this year, and branches shoot every-which-way, with dozens of the lantern-shaped husks in which grow the green fruit. I used twine to tie back a few branches that were sticking out into the pathway, and we trimmed off a few more that won’t have time to actually bear fruit this year. We were happy to see some real red on a couple of her slower-to-ripen tomato plants. I had been worried they wouldn’t make it in this season. After a bit of trimming and tying back, Kimberly picked a small harvest of the ripest fruit, and we carried it back home.

After all that exercise, I managed to sleep pretty well. I’m happy that I’m not feeling too wiped out this morning. Today’s plan is for a rest and recovery day – the most physical thing on the schedule is a short drive to see a college friend give a presentation on her recent PhD research. Oh, and I hear tonight’s match for one of our local sports-entertainment corporations should be quite a show, so I’ll be watching that while lounging on the sofa. And, with apologies to Fleetwood Mac, not thinking about tomorrow.

(By the way, if you haven’t guessed what’s the musical pun, based on the title of this post? This is.)

The Scan.

This Friday, I have my first post-treatment CT scan. The appointment with Dr. Liao to go over the results will be Monday morning.

The purpose of the scan is to see what’s currently happening at the tumor site. We’ve had to wait two months since the end of treatment to allow my mouth to heal up enough that the scan wouldn’t just show the tissue damage from the treatment itself. We’re now at a point where what shows up on the scan should be meaningful. This is really our first chance (beyond Dr. Liao’s observations early on) to see whether the treatment worked.

Am I nervous about this?

Hell, yes.

My coping mechanism for dealing with the anxiety mostly involves focusing on other things. I’ve gone back to work, which helps by giving me a big list of complicated things to get wrapped up in. There are all sort of household chores and mini-improvement projects I can throw myself into, and I’ve been doing that with increasing intensity. And I’m still recuperating, so making sure I’m getting enough calories and rest still takes conscious effort, and keeps me from obsessing (much).

At other times, I try to calmly consider how the site feels. There’s some pain when I open my mouth wide, but that’s quite likely due to expected muscle tightness from the radiation. There is some other lingering soreness at the site, but most of the healed tissues in my mouth are still sensitive, and you’d expect that spot to be the worst.

Still, as the date of the scan gets nearer, I find myself feeling increasingly anxious. And this coming weekend, between the scan and hearing the results, will be pretty tense.

What I want to hear, obviously, is that the scan shows no sign of disease, so the treatment definitely worked, and I can go forth to continue recuperating and begin a series of regular monitoring appointments. Yippee!

What I’m afraid of hearing is that the scan shows some sign of disease, so the treatment was not completely successful, and we’ll need to plan the next steps. I haven’t spent much time thinking about where this might lead, because there are too many unknowns, but it keeps popping into my thoughts. Surgery? Probably. Not good stuff? Definitely.

I’m also worried about the third option: ambiguous results. I’ve looked at enough scans to know they are hard to interpret and don’t come with special color coding on abnormal tissue that clearly indicates “radiation scarring” or “cancer.” I really hope that we don’t end up with this. I really want to know something on Monday.

Good wishes, prayers, visualizations, crossed fingers, etc. are hereby shamelessly requested.

No News is not Bad News.

We’ve been a bit slow about getting new posts up on the blog, which I am sure may have worried some of you, particularly after the tone of the last post. Don’t worry; the lack of posting is not a sign that we’ve been overwhelmed or that things have gang agley. Instead, it’s a sign that things are proceeding as expected, and we are actually getting some time for other activities.

Since the end of treatment, I’ve had two follow-up appointments at UWMC. A week after the end, we met with the rad-onc department’s nurse practioner, Barbara Fristoe. She looked me over, said I was doing very well, and maintained the general consensus of the medicos that I was taking a surprisingly small amount of painkillers. The most exciting part of that appointment was getting the agreement to remove my PICC line, since my blood pressure and fluids seemed to be stable. We got the PICC line pulled that afternoon by the friendly folks in the infusion center, which was great.

The second follow-up was a week and two days later, with Dr. Liao. According to him, side effects should have peaked during that week, which certainly jibes with the impressions I had, captured in the last post. Overall, I appeared to Dr. Liao pretty much as expected. He did notice that I’ve lost 5 pounds since the end of treatment, which is more than I lost during the entire 6 weeks I was in treatment. He wasn’t overly concerned, but was glad to hear that I’ve been monitoring it, and taking steps to control that. He instructed us to pay attention and make sure I was getting enough nutrition.  (Which, I have to grumpily comment, is easy for people without mucositis to say.)

My next appointment with Dr. Liao is in mid-September, by which time I should have healed up enough for a CT scan to be useful to tell us how I’m doing, and review the effects of the treatment. I also have a follow-up on the med-onc side with Dr. Baik in August, but aside from that, my calendar is remarkably free of medical appointments. It makes a nice change from June.

So now I’m working on recovery. I think I’ve passed the summit, but there’s still a lot of road ahead. We did manage to fit in some non-recovery related activity this weekend, with a fair amount of socializing and some home-improvement activity, which I hope to detail in another post. Today I just wanted to catch us up, and let people know that all is going about as well as we could expect, even though we’ve been quiet.

False Summit.

In my past endeavors as a long-distance runner and cyclist, one of the challenges I encountered was climbing hills that had a “false summit”. Every so often, you come upon a long, difficult, steep climb, where you work really hard to get to the crest, only to discover that what you thought was the top is only a change in the slope, and the climb continues for some distance after. There you are, reaching the point you’ve set your sights on, and you discover that it’s only partway to the actual finish, and there’s a lot more work ahead.

The time since the end of treatment has felt a lot like that.

For one thing, no matter how often and how earnestly they tell you that effects continue to worsen for up to two weeks past the end of treatment (oh, and by the way, thanks so much for burying that information in week 5 of treatment, guys), the real meaning doesn’t actually get across. What they mean is that they are giving your body so much punishment, it doesn’t all actually fit in to the treatment period. There’s a backlog. Just when you’re “done,” you really get worse.

(I will admit to wondering, in my darker moments, whether the intention is that the patient experience this part of the process when they aren’t scheduled to be in close proximity to those responsible for it, out of concern for the providers’ safety, or whether they figured that making patients also have to deal with going to appointments is just too much.)

Tissues that were already inflamed became more so. Areas that had not previously felt dry or painful started to. Problem spots in my mouth got more numerous and painful, to the point that eating anything by mouth became impossible. Saliva and phlegm got disgustingly thick and ropy. Everything bad turned up to 11.

So we’ve turned up our response as well. More applications of Aquaphor. A humidifier for the bedroom. In an effort to control the phlegm and get control of my fluid balance, I stopped using the relatively high-sodium, milk-based prepared formulas in the PEG, and switched to juice-and-protein-powder mixes of our own devising. Kimberly found a rice protein powder that mixes smoothly, and delivers a lot of body-rebuilding goodness.

I’ve even upped my dosage of painkillers, though I expect to still surprise the medicos.

All of which seems to have worked. I’ve now made it almost two weeks, day by day, night by night. I think I’m at a point where nothing is getting noticeably worse, and several things have started to get better, slowly, from their worst points. I think.

Or maybe I’ve just hit the worst kind of false summit. Sometimes, due to optical illusions and local effects, the road appears to have gone flat, but in reality is just slightly uphill. You find yourself struggling more than you think you should, and you’re unable to understand why it’s so hard to keep going. Aren’t we on the flat now? What’s going on? I thought that was the top. Did the climb take THAT much out of me? It’s really demoralizing.

Overall, I’m clearly getting better, but I’m still in a place where some things seem to be worse, or just different, each day, so I don’t have as strong a sense of “Yay! I’m getting better!” as I would like. The recovery is hard work, and slower than I’d anticipated. Maintaining morale is tricky.

I know I’ll get through this; it’ll just take time and continued “turning the crank”. But if my life were on Tivo, I’d be hitting the button to jump forward through this section.