The side effects of the Cytoxan, and at this high of a dose, have been memorable. Diahrrea. Vomiting. Simultaneously. At least four episodes in the middle of the night. My mouth started getting sore, and I’ve just felt all-around miserable!

But now a bunch of hours have passed, and so has the vomiting. Things are more bearable.

Tomorrow is “day zero”: when I get back the stem cells we collected in November. I wonder if I’ll still recognize them! The event itself won’t be fancy (or a ceremony), but it marks the end of us trying to damage my body on-purpose. And that sounds like a day worth marking.

Also, Jana brought me a stuffed robot that I love and have to share with you all. His name is “Ondansetron”…

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.

When we got to the desk the friendly staff announced “you must be Tom Music!” My reputation (and my appointment) preceeded me.

They took me to my room, showed us where to find the snacks and then an oncology nurse came in and gave me a “chemo teach” — a summary of all of the drugs I was going to receive, and the possible side effects.

In the meantime Nurse Ruth Ann was plugging into my chest port, preparing all of the equipment needed to start my magical journey.

The waypoints for the day were Adriamycin, Cytoxan, Vincristine, then Rituxin. The Adriamycin came in three large red syringe canisters — like some sort of massive poison Jell-O shooters.

Before we began, I got more information on the UW’s analysis of my lymph node biopsy. A few things stood out in the report:

• There were two separate colonies of cancer cells
• It could be that one was a slow-moving, and spun off a more aggressive type
• It could be that both are just different forms of a more aggressive type

Even though we didn’t have a definitive result yet, the likely presence of an aggressive cancer meant that R-CHOP was the way to go.

One more cc of Dilaudid helped to get me more comfortable, and then it was time to get started. In went the Adriamycin. She did that one by hand, since they need to be able to stop instantly if anything looks like it might be leaking. That stuff can burn!

Next the Cytoxan. Then lunch arrives! A tasty sandwich for me and my suite-mates. Grog all around!

The Vincristine starts up and goes without a hitch. Next up is the Rituxin. This is one that can cause allergic reactions, so they start really slow and crank up the pace every half hour.

We start at 50cc/hr. Little to no trouble. Bump it to 100cc/hr; starting to get a bit of a rash. Breath feels “heavier.”

My dad flew into town from a business trip so he could be around for support; he and my mom arrived just when the Rituximab was starting to get to me. Poor kids, they missed the easy part!

They crank the drip to 150cc/hr, and the rash gets a bit stronger. My head is itching. My stomach starts to feel bad. We go to 200cc/hr and there was pain in my belly and up my torso inside. Made use of a blue bag. It was time to stop cranking up the pace: we’d found my maximum.

It sounds like the pain I was experiencing could be some immediate tumor cell death. My spleen was a major cancer hog, and I had a ton of lymph nodes up and down my abdomen that were enlarged. That is indeed where most of the fighting would take place.

I’ve developed a fever during the Rituxin, so they Tylenol me up. As folks help swivel me off the bed into a wheelchair, I notice that flexing my abs doesn’t hurt my shoulder anymore. Hooray for progress!

As long as I don’t vomit on my keyboard.