They never show the months of suffering that the family-owned convenience store goes through as they rebuild. Those kids who have a crater where a park used to live.

The TBI and chemo were the monster. Mucositis is the rebuilding, and it lasts around 15 days. Drinking water causes me to hiccup. My mouth is sore, like, all the time.

It sounds like the main variable that could change in my favor is the magnitude of the mucositis. It will likely not shrink the time, but the Palifermin drug they’ve given me might shrink the depths to which I sink.

But as of right now, just the beginning, this stinks.

We are essentially flooding the entire Earth, save for Madagascar, and then repopulating Madagascar with a bunch of people we’re pretty sure aren’t cancer.

I got word this morning that my white blood cell count is under 100, which puts me in the running to catch just about any two bit infection that strolls in here. That’s why there’s a curtain blocking my door. And an actual door. Plus desks, and I think two levels of elevators. And people dancing in bit promotional costumes shaped like hand-sanitizer bottles. Seriously, folks!

As sleeeeeeepily mentioned before, the first four days of conditioning were total-body irradiation. For this, you are escorted into a room and directed to stand in a box which they take x-ray measurements for your lung blocks. The lung blocks are huge chunks of metal they use to block some of the radiation from hitting your lungs. Your lungs get to sit out half of the sessions on account of their wussy knees.

Then they have you stand in the box again, hold the grips, close your eyes, and START THE BEAMS. The beams are, from sheer muscle-fiber actuating, the least exciting part of the event. A buzzing noise plays to let everyone know that the beams are active, but they really could just have one of those aaaaa-ooooo-gah! horns playing instead. The real magic is where the beams come from…

But for the patient this is all very boring. It was described by one patient as “waiting for a bus that never comes.” Amazingly, however, after all of that waiting, it is all one can do to get a couple of winks. Oh, excuse me for descending into medical jargon. “Couple” is cancer patient for “giant burlap sack”.

As so I napped. Uncomfortably at first, but soon finding my niche. TBI, nap nap, TBI, nap nap nap. Eventually the TBI part dropped out and there was just napping.

Even napping must begat something though, and the human that wrote this post was energetic and full of promise! The human that will write the next post, though ostensibly the same, will not share these qualities…

We were pretty sure they weren’t hydration-related, as we thought ourselves to be perfectly capable monitors of that sort of thing. As faced my SCCA doctors about it, and they pointed out that just about any scan that would have indicated something was wrong is already a scan I’ve had recently. Seeing our level of consider, and considering the possibility to having these dizzy spells might complicate the upcoming busy weeks, they decided to move he whole circus inpatient.

And so, a few days ago, I checked-in to the UWMC. I’ve been getting total-body irradiation twice daily, and napping during just about every other waking second. It’s amazing how tiring is it to get your entire body irradiated! And I’m now taking a huge regimen of pills (“to protect against viral infections”, “to protect against bacteria”, “to protect against vorpal swords”) that keep me safe from many common bad guys.

I’ll write in more detail about more of this at more of a later time. I’m tired now, and I think I want to nap before dinner arrives!

[edited 03/22 for wording and clarity]

“CONCLUSION: Primary chemotherapy based on high-dose MTX and ARA-C is highly efficient in PCNSL. Response rate and response duration in this series are comparable to the response rates and durations reported after combined radiotherapy and chemotherapy. Neurotoxicity was infrequent.”
(http://www.ncbi.nlm.nih.gov/pubmed/14597744?dopt=Abstract)

Two things: first, HD-MTX + Ara-C was what I did back in the beginning of the year. Woo! Second, PCNSL is lymphoma that originates in the brain. It is much more scary of a situation than mine.

And our attending doctor, after reviewing my case some more, agrees with the opinion that this isn’t a CNS relapse. This is good news! A relapse of lymphoma in the CNS, especially this soon, would be a sign of a particularly tenacious (and difficult to kill) lymphoma.

It is looking like I’ll not want to get the boost (but still get the conditioning TBI). I’ll sleep on it to make sure.

The specific conditioning that has been recommended is TBI along with Etoposide and Cyclophosphamide. For those of you keeping score at home Cyclophosphamide was part of the R-CHOP dream team, known otherwise as Cytoxan. Take a second to go read the “TBI” link. It’s short.

Welcome back! They’re planning to hit me with 12 Gy of radiation which, as you read, is more than twice a dose that is fatal in most people (without aggressive medical attention). That’s what my stem cell collection was all about. My stem cells are “aggressive medical attention”. “Patient, heal thyself!”

One of the biggest side effects of all this toxic stuff is mouth sores. When people say that most chemo and radiation attack fast-dividing cells, what they really mean is that it kills all cells that are in the process of dividing. It just happens to be that most cancer cells are more likely than lots of others to be dividing at the time. For my transplant I’ll be armed with a (relatively) recently developed drug named Palifermin, that builds up extra mouth and stomach lining ahead of time. My intent is to handle this all like a champ, and skip the mouth soreness.

On to the dilemma mentioned in the title of this post: the extra head radiation! We met with a radiation oncologist on Thursday that we liked, and she described the kind of program she would recommend: 32 or 48 Gy to my head (including the TBI dose of 12 Gy). She mentioned, however, that there aren’t really data or studies that describe the efficacy or specific side effects of cases like mine. We liked her, felt like we could trust her, and appreciated her making clear that her recommendation was largely based on her own experience and observation.

On Friday we met with a neuro-oncologist who disagreed. In his opinion, the appearance of lymphoma in my CSF didn’t represent a relapse. He feels that the disease was there all along, and that the three doses of methotrexate that we did as a prophylaxis was not enough to clear it out. He agrees that we ought to go ahead with the planned conditioning and transplant, but would add six doses of monthly DepoCyt to continue cleaning my head out. He thinks the cognitive risks of the extra head radiation are unnecessary at this point.

The intuition of Jana and I high-fives Dr Chamberlain and Dr Taylor, the two neuro-oncologists that have looked at my case, when they say they’re not comfortable calling this a “relapse” in my CNS. It would be good to hear what things were considered when the big conference at the SCCA considered my case a few weeks ago. Part of me wonders if they put too much faith in the LP and MRI results. Dr Chamberlain described each test as having a pretty high rate of not detecting small amounts of disease. For an LP to catch it the lymphoma needs to be mobile enough that it would be included in the sample of CSF taken. For the MRI to find it, the disease needs to have some bulk. Microscopic amounts of disease are tougher to see at that level of detail.

And so now we’re faced with the choice of whether or not to go for the radiation. It feels like skipping it is going with our gut, but I don’t want to later regret not being as aggressive as possible. I also don’t want to later regret opening myself to the risk of some sort of brain damage.

And I need to decide soon.