This time I wanted to do everything I could to avoid suffering through the joint pain on Saturday morning. My lizard brain considered trying to stay in the hospital a few extra days (or checking into Extended Observation) to be somewhere that had IV pain medication available.

My rational brain said this was silly. Checking into an expensive room for a night to avoid a few hours of pain seemed excessive. And my rational brain won, as it often does.

Besides, the pain showed up a day early. Friday morning my knees and ankles hurt like the dickens for a few hours. Engage opiates! And ibuprofen! I got up and read stuff for a few hours, and eventually (after an hour or two) the pain subsided enough for me to go back to sleep.

I did the same thing on Saturday, and on Sunday. That would’ve been a lot of days in the hospital!

I’m glad that’s done with.

Next we scheduled an appointment with a transplant specialist doctor at the SCCA to see what she recommended as the next step. Apparently the speed with which the lymphoma asserted itself in my CNS suggests that we ought to do a stem-cell transplant.

My case was discussed by a bunch of well-regarded doctors at the SCCA, and the consensus was that I ought to do an autologous stem-cell transplant.

This is a biblical-flood sort of treatment. When we collected the blood stem-cells back in November, that was us preparing am ark. Now we’ll irradiate my entire body and fill it with a crazy amount of chemo, in a stage known as “conditioning”. This will hopefully kill off any remaining individual lymphoma cells. Unfortunately it also kills offy bone marrow (and along with it, my body’s ability to produce new blood cells).

A few days later they give back my collected stem cells and my body starts to rebuild. The stem cells find their way to my bones and start producing the cells that make up bone marrow.

As part of this, I think I’ll lose a lot of the immunities my body has built up over the year. We’re really hitting the reset button!

There’s one additional question to be answered: there wasn’t a solid consensus among the SCCA doctors on whether or not to recommend extra radiation focused on my brain and spine. Lymphoma in the brain can be sneaky (as we’ve found), and am aggressive approach is more likely to get it all.

This can, however, cause damage to healthy brain tissue. Possible decreases in memory strength, among other undesireable things.

I need to decide soon, but I’m leaning toward going for it. The goal of a treatment like this is a cure, and I want to do everything I can to get there.

Bring on the bone pain, bring on the painkillers. Bring on the splitting headaches from the lumbar puncture we did prior to the MRI. Oh man, the headaches. Intense behind-the-eyeball pain that is dulled by powerful painkillers, or nearly eliminated entirely by simply lying down. Imagine if every headache could be relieved simply by laying horizontally. I think we’d live in a much more peaceful world.

As I was saying: “bring it on” — I’ll make it though the week or so and then it’ll be smooth sailing.

Then a call comes in on Thursday: I can stop taking the shots for now. One of the tests from last week’s lumbar puncture was abnormal. Abnormal how? Showing-lymphoma abnormal. Dr Norman wants to meet with me to discuss this tomorrow and start intrathecal chemotherapy immediately.

Bam! We’re right back into the scariest part of this whole process: when you know something is wrong, you have a name for it, but you don’t know the full extent of what you’re facing. So Thursday night we know that there’s sign of lymphoma in my nervous system, and that this is bad news.

We meet with the doctor and he explains the situation: of the two tests that could indicate lymphoma in my nervous system, one was abnormal and one was normal. The test that was normal (cell differential count) was the one that would have indicated relative quantities of cells in the spinal fluid; in the case of well-established central nervous system disease, this would have been abnormal. The test that was abnormal (flow cytometry) identifies the characteristics of cells that are present, but doesn’t provide data on their distribution.

While both tests didn’t overwhelmingly indicate lymphoma, he strongly advised that we take the flow cytometry result seriously and begin treatment as if the result was definitive. If there’s even a little bit of lymphoma, we should knock it out before it spreads.

Dr Norman drew more fluid before administering my first intrathecal chemotherapy. The process was pretty similar to my first lumbar puncture, but my anxiety was less on the procedure and more on the idea that there was cancer in my brain. Ugh.

We spent the weekend relaxing with family down near Portland, and I think laying low helped. There weren’t any headaches from the puncture and no noticeable side effects from the intrathecal chemotherapy. Thank goodness!

The plan was for the next intrathecal chemotherapy to be administered a week after the first, but Dr Norman wanted to see the results of the same tests on the new sample of spinal fluid. I kept checking during the week, and got the word on (I think) Thursday: both tests came back negative for lymphoma. Both tests were perfectly normal!

Instead of doing six rounds of intrathecal methotrexate, we’re going to do the same three rounds that he originally proposed as a risk-reducing measure. The conflicting results aren’t something that he can explain; he’s a bit baffled by them. One possibility is that my body’s response to the infection that caused the Bell’s Palsy included clonal cells that identified in the flow cytometry as lymphoma. In the week between the two rounds of testing the response could have abated and stopped influencing the result.

It sounds good in my mind, so that’s what I’m going with for now.