Also: I got a blood transfusion today! My red blood cell count is lower than they’d like, so they ordered up some bags of blood. The first bag went without a hitch; the second bag was not hitchless. I started getting chills and they stopped the transfusion. However, according to the lab, this wasn’t actually a reaction to the blood, and we just wasted half a bag when we stopped it. At least I got a bag and a half, which should do for a few days.

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.

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.