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.

0, 0, 0, 0, etc

Today: 130k! Woo!

The stem cells are in the mix, making new cells. I can’t wait for tomorrow’s numbers.

Also: I got a blood transfusion today! My red blood cell count is lower than they’d like, so they ordered up some bags of blood. The first bag went without a hitch; the second bag was not hitchless. I started getting chills and they stopped the transfusion. However, according to the lab, this wasn’t actually a reaction to the blood, and we just wasted half a bag when we stopped it. At least I got a bag and a half, which should do for a few days.

They never show the months of suffering that the family-owned convenience store goes through as they rebuild. Those kids who have a crater where a park used to live.

The TBI and chemo were the monster. Mucositis is the rebuilding, and it lasts around 15 days. Drinking water causes me to hiccup. My mouth is sore, like, all the time.

It sounds like the main variable that could change in my favor is the magnitude of the mucositis. It will likely not shrink the time, but the Palifermin drug they’ve given me might shrink the depths to which I sink.

But as of right now, just the beginning, this stinks.

The nurse prepared me by giving me really large amounts of Benadryl and Zofran to try and keep me from getting nauseated during the actual process. The preservative that the stem cells “chill” with can make people’s bodies do weird stuff.

During the actual infusion I felt a scratchiness in my mouth and throat around where some of the lining has been weak. It really hurt! I’m glad that I collected quickly in the beginning, and so didn’t have as many bags to retake.

Want to know how the cryopreservation works? You see, when water gets really cold it crystallizes (i.e. ice). Our cells are full of water. Deep-freeze ‘em and they get all broken.

DMSO, however, doesn’t crystallize at the same temperature. Collected stem cells are bathed in DMSO as they’re frozen. As the temp drops, the cells suck in some of the DMSO and spit out some of their water. And this is how cryopreservation works.

You can put this blog post in your CV if you want to start looking for jobs.

The pain from earlier today is gone, and the cells are delivered. All that is left is for them to activate and take their places.