I’m happy to to be able to report that the chemothererapy (hyper-CVAD) that we launched is having the kind of effects we were hoping to see. Namely three things:

• My throat is incredibly sore
• I’m spiking short-term fevers left and right
• The cancer cells are going away!

They’ve been giving me just-about daily blood and platelet transfusions to replace the ones that I’m not able to self-sustain. If you’re eligible, please get out to the Puget Sound Blood Center or your own local blood bank. They are hungry little boys starving for those extra amounts you don’t need! And now I must rest.

The biopsy from back on my birthday shows significant infiltration of the bone marrow by the more aggressive of the two lymphomas that I had before. This pretty solidly explains why my blood counts have been so low; there isn’t any room for the bone marrow stem cells to operate properly. In fact, the pathologist reported that it was difficult to spot any stem cells in the sample at all!

My spleen is bigger, but not as big as last time. Some lymph nodes are bigger, but not as large or as widespread as last time.

In addition, there may be some water around my heart. I’ll be getting that checked out further to see how that will impact treatment.

Today is my day off from medical stuff. Tomorrow, a transfusion and an LP to make sure it hasn’t spread back into my brain. The next day: into the hospital for heavy duty chemo.

And when this new type of chemo wipes it away, I’ll probably be getting another stem-cell transplant. The scarier type this time.

Or, for the abridged version:

• the very beginning
• the first mention of lymphoma
• double lymphoma
• chemo begins
• so it, uh, spread to my brain
• preparing mentally for a stem-cell transplant
• home from the hospital, starting recovery

I really enjoyed giving an Ignite talk. Now I need to think of a good topic for my next one!

Ignite Seattle 11 is happening tonight, and yours truly will be among the speakers! The format is that each speaker has five minutes, and speaks along with 20 slides that automatically advance every 15 seconds. It’s a fun exercise in creative brevity.

Cancel whatever you’re doing and come check it out!

http://igniteseattle.com

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.

My energy level is improving, too. My voice is more resonant again when I talk on the phone. I still lay on the couch a lot, but I’m more energetic when I’m up.

Taste is getting better and better. Today I noticed that I can start to detect saltiness again, and I had mustard on a bockwurst today and was able to taste it (most of the way).

The nutritionist we met with at the SCCA said that seeing how much I had improved week-to-week made her day.

I still have to take 8 pills twice a day, and I still get pain in my legs every once and awhile. It feels like the sensation after working out more than usual, even though I’ve not really exercised. And I’ve started having dizzy spells again after getting up from a really relaxed sitting position. If I’m not careful I collapse onto the floor or the ground until the spell passes. Really annoying, and kinda dangerous!

But I’m getting better.

Some of the same symptoms from the hospital continue to plague me here; one of the biggest is that my legs keep tensing up. I can focus and relax them, but they inevitably tense up again.

Hopefully a few days at home will set me right as rain!

I’ll go give it another try, but I don’t think it’ll work any better this time than the last. There’s just not much else to do at 5 in the morning around here!

And so now I must entertain myself for one more day, and then prepare for a day full of meeting with nurses and pharmacists and everyone else before I get to triumphantly walk out the door back into the world.

At least until my appointments at the SCCA on Monday.