First Fraction; Return of the Neuropath; A Care Package From Beyond The Veil?

Hello everyone! Assuming nothing goes awry this afternoon will include the 20th of 25 radiation treatment fractions. Five more to go! Yes I know I haven’t posted anything since treatment actually began – chemo-radiation has unexpectedly proven to be a bit more taxing than systemic chemo. It’ll take at least a couple posts to get you all caught up (by which time we might be at the next rest stop in the journey). So without further ado…

First Fraction

Each radiation therapy session is called a fraction, and I’ve got 25 of them ahead. They occur every weekday. Except for holidays. I wonder if the cancer cells know which days are holidays? When I asked one of the nurses she just said that everyone takes holidays off. I guess its a temporary truce like suspending a war for Christmas.

The first fraction was scheduled during the simulation appointment for the following Tuesday at 1:15. I was told I’d be given the full schedule on the day of the first treatment. Lucky for me every treatment is at 1:15, which means I won’t be spending hours entering it in my calendar.

So on Fraction Day 1 I arrive a little early and head for the radiation oncology waiting area. For whatever reason when undergoing radiation therapy you bypass the main oncology reception and there’s no check-in. A radiation nurse fetches you from their waiting area (which is quite spacious and has an outdoor patio – somewhat better than the main oncology reception).

While waiting there one of the nurses came out to inform another patient that the machine had faulted and it’d be an hour before the techs could get it back up and running. Now this got me thinking – was my appointment delayed as well? And how frequently do these machines break down? Some of the literature I’d read mentioned that fractions were given every weekday, but could be skipped if a machine was down for routine maintenance or a fault, which got me thinking these faults happen on a regular basis. While there’s probably no harm in drawing out the treatment schedule, it would be annoying to arrive only to find the appointment had been delayed or canceled altogether. The appointments are only fifteen minutes long so an hour’s delay is significant and could really mess with your schedule if you had anything planned afterwards. Not to mention they want you to drink two glasses of water half an hour before the treatment time. I’m not sure how they expect you to wait around with a full bladder… (And yes, they reason they want you to drink two glasses is so you have a moderately full bladder during treatment. By pushing organs/tissue away from the tumor it minimizes their radiation exposure.)

Fortunately the machine I’m being treated on was humming (or buzzing) along just fine. About 1:25 a nurse came out to get me and apologized for the tardiness – even though it was the other machine that was down it apparently throws off the entire staff since they’re trying to reschedule affected patients. (And I have to say on most days a nurse would come and get me at 1:15. Or even a few minutes earlier. I once joked that they must be waiting for me to show up since I’d barely have time to sit down before they’d come for me.)

So once I was in the treatment room I was shown to the changing area. Or disrobing area. You don’t really change into anything, at least not for my treatments. Instead I was shown a cabinet-ful of pillow cases and told to grab one to cover myself. Pillow cases? Now I don’t know about other people but when I’m in a medical environment I’m not all that concerned about modesty. I assume they’ve seen everything. And really, I’m supposed to climb on the treatment table while holding a pillow case against my front? Well as it turns out there’s another reason for the pillow cases (and yes they really are pillow cases.) Once you’re on the table face down they need to align your body using the tattoos that were placed during simulation. While they can move the table a bit the primary method appears to be to tug on the pillow case you’re lying on. There appears to be an art form to this which includes “tugs” and “rolls”. Tugs as you might guess ends up moving your whole torso left or right a bit. Rolls I think compress or stretch parts of your abdomen, which has the opposite effect of stretching or compressing the skin on your back.

One the nurses were satisfied with the tattoo alignment they went to their control room and I heard a buzz (like you hear during dental x-rays), some whirring and then another buzz. These are two orthogonal x-rays, one from the top and one from the side. One of the techs explained these aren’t high-resolution x-rays. They can’t make out the tumor But they can image organs well enough to precisely align my body to how it was during simulation (when I assume some higher resolution images were done). Shortly after the x-rays the table jerked slightly – some fine positioning adjustments. Then there was a loud “thunk” and about 50 to 60 seconds of buzzing and whirring. Then more whirring, another thunk and about 10-15 seconds of buzzing. And that was the end of the first fraction.

Well, sort of. After all the whirring and buzzing was over one of the nurses came back into the room to take a few readings. I assume these are field strength numbers, and this gets done once a week. And since this was my first treatment there was an addition step where the nurse used a pen to outline the field areas (one on my backside and the other on my left side). He then took some pictures and and said these go into my file and could be referenced if other teams were doing the treatment. (As it turns out so far I’ve usually had the same two nurses, but every so often there’s a different crew.)

Then the first session was really over. How I’m supposed to hop off a kitchen-counter height table while covering myself with a pillowcase I really don’t know. So didn’t try. I did grab the pillow case once I was back on my feet.

For the curious the machine I’m treated on is a Varian TrueBeam. Varian’s headquarters is located in Palo Alto, a couple miles down El Camino from PAMF. So I suppose if something does go wrong they can get someone on-site rather quickly!

Return of the Neuropath

Those of you who tuned in last season may remember that peripheral neuropathy is something I had during systemic chemo. There were actually two types – the Oxaliplatin-induced cold neuropathy and more general peripheral neuropathy. The cold-induced neuropathy was definitely more pronounced back then and led me to wear gloves to get anything out of the refrigerator. The freezer was off-limits without tongs. Fortunately the cold sensitivity was only pronounced for a few days after each infusion. There was also a touch of general peripheral neuropathy – numbness/tingling in fingers and toes, but not really much of it. It wasn’t enough to get me or my oncologist worried.

Well for whatever reason the general neuropathy returned with a vengeance about a month after the last infusion. It’s more of a numbness than a painful variety. For my feet the general sensation is like you’re walking on sand and can feel the grains pressing into your skin. It gets worse if I walk for more than a block or so. Fortunately its not really painful but I otherwise can’t feel much in my feet. In fact there have been a couple times when I’ve been in the yard and found I’d left my slippers behind several steps back (why they keep coming off is something else I’m not really sure of.) The fingers get a prickly feeling but mostly are numb, especially the fingertips. This is particularly problematic since I touch type and can’t feel the nubs on the F and J keys, and also have issues telling if my fingers landed on a key, or on two keys, and how much pressure I’m exerting.

Speaking of pressure sensitivity, or lack thereof, you really don’t know how much you depend on it until its gone. Like say you’re grabbing a bottle of water. Grab it too tight and you crush the bottle and water starts spilling everywhere. Grab it too lightly and you drop it and water spills everywhere. (No, my kitchen floor isn’t covered with spilled water. I’ve resorted to using mugs and fortunately haven’t crushed one yet.) This is complicated by a side-effect of the chemo-radiation drug Xeloda, which can dry out the skin. While I don’t have full-blown hand-and-foot syndrome, dry skin on fingertips does make them a bit slippery. Not exactly helpful when you’re having issues with pressure sensitivity.

The new oral chemo nurse I have for chemo-radiation was arguing with my oncologist to reduce the Xeloda dosage from 1450 mg to 1300 mg since she thought the neuropathy was caused by it. Even though I pointed out that the neuropathy started a few weeks before chemo-radiation. And while it would be pretty cool if time travel was a side-effect of Xeloda, we’re pretty sure side-effects only happen after you start taking it. My oncologist thinks this is a residual effect of the Oxaliplatin – which seems the most plausible to me. She said they could prescribe Gabapentin to alleviate pain, but I really don’t have any. So it looks like we’re relying on that old adage “Time heals all wounds.” Neuropathy can take from a couple months to a couple years, and given how its progressing I’m guessing it’ll be the latter.

A Care Package From Beyond the Veil?

So we’ll end this post with a bit of a mystery. A couple days into chemo-radiation the package you see to the right arrived. It’s unusual in a couple ways. First is that to the best of my knowledge this is the first piece of mail Jasper’s ever received. Not that he couldn’t have been checking the mail before I did – he and Caper were home a lot more than me after all. And I always suspected they could get out of the yard if they wanted to. Second is that Jasper passed on eight years ago.

So is this an order that Starbucks finally got around to filling eight years late? Or has Jasper been checking up on me and noticed I ran out of Lion’s coffee grounds a couple weeks ago?

(For the moment I’m going with the latter. Which might also explain a text I got last year from someone claiming to have found my dog. If you run into a Jack Russell trying to buy some coffee at Starbucks tell him the old man says “thanks” and he’s welcome to come by and chase away the cats and squirrels anytime.)

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