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.

I’m still getting dizzy spells, but not nearly as many. Our best guess is that the intrathecal chemotherapy has messed with my body’s autonomic nervous system response. When you stand up from sitting your body automatically (and nearly instantaneously) recognizes that if it doesn’t constrict blood vessels in your legs, gravity will pull blood away from your brain and into your legs. This constriction keeps your brain getting oxygen and keeps you from passing out.

We think that response is (occasionally) not working quite right for me. In fact, a few weeks ago I was at the hospital getting checked out for some really bad muscle aches when I had one of these episodes. I’d been sitting, eating some take-out (Shultzy’s, mmm) that Jana picked up while we waited for a prescription to be filled. I got up and walked to the sink to wash my hands. Just as I grabbed paper towels to dry, my brain gave a brief signal that “hey, I’m not getting enough blood up here!” Before I had time to react, I started to lose consciousness.

Fortunately for us, the doctor that we’d seen chose this exact moment to peek in and see if we needed anything else. He and Jana were both right at hand when I needed to be helped to the floor. I, myself, don’t actually remember anything between grabbing the paper towels and being on the floor with a pillow under my head, surrounded by at least four nurses plus the doctor. I was out for at least a minute. Totally unresponsive. Jana couldn’t tell if I was breathing or not. It was interesting to learn that one side of my body started responding before the other. I spent the night in the hospital with monitoring equipment, and naturally nothing else exciting happened.

That’s what the bit in the beginning about the “five weeks since hospital” being not so exact was referencing.

Since then I’ve occasionally had spells of dizziness, but none nearly so epic. Until today.

We went to meet my new Group Health oncologist, and during the initial vital signs check my BP clocked in at 84/6o-something. 84! After sitting down for awhile chatting with the doctor, the nurse had me move from my chair to the exam bed. I didn’t take the normal precautions of standing and waiting in place, opting to move right away to the bed. I sat down, a wave of light-headedness hit me, and I was out. Apparently my eyes rolled up in the back of my head and my breathing sounded really labored. My arms were shaking like I was frustrated at something, and I wasn’t responding verbally.

We gave the staff quite a scare! They hooked me up to some IV hydration for an hour, and nothing else exciting happened the rest of the visit.

We’re all thinking that my low BP was related to not doing a good job the previous day of staying hydrated. On the way home we grabbed a ton of soda and juices that I can drink along with water to redouble my hydration efforts.

The best guess of everyone, after scans and consultations and talking talking talking, is that the occasional autonomic nervous system lack of response is a toxicity from one or more of the treatments I’ve had. The most likely suspect is the intrathecal chemotherapy that we’re using to try and keep my CSF cancer-free. But even for the neuro-oncologist we’ve been seeing, this isn’t a side-effect he recognizes from other patients. And we don’t want to stop the therapy. But the question remains: will continuing it make this worse?

It’s stressful dealing with these dizzy spells, and its stressful to think about reducing the amount of therapy we do. Fortunately, my blood pressure can accomodate some stress right now.

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.

Also, since I wasn’t in the same intense pain as last time when I started chemo, I’m not all hopped up on opiates today.

This means I’m fully awake and aware to notice the return of metal mouth. I haven’t had anything to eat yet, but my mouth already has a metallic taste.

Not to mention that my head and stomach feel hung-over. I already had a bit of that before I started sleeping for 10 hours though.

Another interesting point about today: my doctor felt that with how low my blood counts were before chemo, and with the expected drop due to the chemo, that I ought to have a round of colony stimulating factor treatments. These treatments use a genetically modified form of E-coli bacteria to deliver a message telling my bone marrow to ramp up neutrophil production.

Once a day for the next five days I’ll be filling up a syringe and injecting myself in my belly. This five days of treatment would have cost $1300 without insurance! With insurance: $34. And it’s got to stay refridgerated or it’ll go bad.

Now I will sip my coffee and hope it takes not of metal. Cheers!