I’m being disingenuous. When he would say “good news, everyone” it was always followed by bad news for everyone. Everyone but him. Me, on the other hand, I have actual good news!

There is no detectable evidence of lymphoma in my body. I had a PET/CT recently that checked everything between my neck and my knees, and the flow cytometry on my last sample of CSF came back clean. Booyah.

Also, I forgot to mention in my last post that I’ve been seeing an opthamologist who was noticing that the pressure behind my eyes were elevated. After confirming last week that my CSF pressure was elevated, the opthamologist and my neurologist agreed that I should start taking a diuretic that would reduce the fluid pressure on my optic nerve. I have a follow-up visit in a few days, but I’m pretty sure we’re going to find that it’s working. The double-vision that I’ve been experiencing off-and-on seems to have disappeared completely since we’ve started this stuff.

I am so incredibly happy to see that symptom go away.

Also worthy of note: I haven’t had a dizzy spell in a week and a half. I wonder if those were related to CSF pressure too. Either way, I’m not questioning it! We were worried that the intrathecal chemotherapy sessions were making the dizzy spells progressively worse, but the most recent dose didn’t seem to cause any increase at all. I’m really glad to break that cycle.

I’ve still got monster amounts of fatigue, but it is incredibly encouraging to see two of my more debilitating symptoms get knocked out in the same two-week period.

Dr Norman sounds convinced that the negative result is the one to run with; in his opinion we can stop the intrathecal therapy and stamp treatment as complete!

It feels a little strange to be finished with intrathecal so abruptly, and the threat to my brain was a lot to take in. I’ll be asking Dr Norman some clarifying questions about the state of things, and maybe even get a double-check on calling things “done.”

But we’re there. We made it, and we’ve bought tickets for our “victory lap” trip!

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.

A few major components of our immune system are known as B-cells and T-cells. They attack invading viruses and bacteria in different ways. Those ways are real interesting, but out of the scope of this discussion. Moving on!

My lymphoma, technically my lymphomas, affect different types of these B-cells. Not just are B-cells different from T-cells, but B-cells are different than other B-cells based upon where in the immune system they’re sourced.

These, and most cells in our body, have a series of systems that regulate when they’re approved to duplicate themselves. For example, while a cell starts duplicating it’s genetic blueprint, it runs a check on its DNA to make sure there aren’t errors in it. If it’s clean, it proceeds to clone its DNA. Next it tests the clone to make sure it’s A-OK. If everything is fine, the cell starts to grown and then split in half (leaving one copy of the DNA in each cell).

These regulatory processes help our immune system cells duplicate just the right amount of themselves to keep the right sort of population count.

But what happens if the gene responsible for running that check gets damaged? A cell that has developed flaw in its DNA will be able to duplicate itself unchecked!

And that’s how things gets started. One cell gets DNA damage in just the right way that it stops recognizing that its damaged, and turns into 2 of them. Those 2 become 4 become 8 become 16. Ad infinitum. Or at least ad chemotherapum.

As I was saying earlier, B-cells are all different from one another. Even the B-cells that came from the same area will have slight differences from one another. Like tiny immunosnowflakes.

If you grab a whole handful of B-cells, or a whole lymph node full, and you find a bunch of B-cells that are exact duplicates of one another, something is wrong with the reproductive regulatory gene in that line. You’ve found lymphoma!

If you grab a lymph node full and find two different sets of B-cells that are exactly alike, then you want to dig deeper. Run some tests. Some flow cytometry. My hospital ran these tests, then ran more tests, then sent off the material to the UW research department to dig even deeper.

In my case, the two sets (or colonies) of B-cells were genetically different. Two lymphomas!

By studying what different signals these cells are sending out and receiving, what kinds of other things these cells are looking to bond with, hematopathologists can start to classify where in the immune system these B-cells originated. And with this, get some idea of how they’ll behave once they’re cancerous.

The current speculation is that I have one line of Follicular lymphoma, and one line of Marginal Zone lymphoma. Both of them aren’t particularly aggressive, but that also means that it might be tough to destroy them completely. The more aggressively cells reproduce, the easier it is to chemotherapy their heads off.