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Jun 12 10

Good News, Everyone

by Tom

If you didn’t automatically read the title in the voice of one Hubert J Farnsworth, you might try watching this video five or six times. That should help.

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.

Jun 2 10

Things Got Worse and Then Got Better

by Tom

In my previous post I described two episodes where getting up too quickly caused me to get light-headed and eventually pass out. Recognizing that simplicity is the ultimate sophistication, I decided to take out a step.

We celebrated Mother’s Day with my mother-in-law a week late. We drove up north and took her out to a fancy dinner. During dinner, while just sitting and eating my food, I passed out. No standing up. No walking. Just steakin’. And it happened twice! One minute I’m getting about three-quarters of the way through my steak, and the next minute it’s gone! (They’d taken it to box it up for me to take home).

It happened again on the ride home, so we went in to Urgent Care to get me checked out. My heart was fine, and my blood counts were A-OK. The doctor on duty decided I ought to start an anti-seizure medication, Keppra, to see if it helps.

Well, since then I’ve noticed a marked decrease in the number of spells that I’ve had. I just had intrathecal chemotherapy again today, so we’ll see if that brings them back or not. I’ve been seeing a neurologist that doesn’t buy into the theory that the anti-seizure medications are the cause of the freedom-from-passing-out.

Also! A few weeks ago I had a fever that got as high as 103.1. Once again, we went into Urgent Care so they could test if I was fighting an infection. All of the cultures they did came back negative, which seemed good! But then we heard from my oncologist’s team that they wanted to run a PET scan to see if the fever was a sign that my lymphoma was back! We’ve got that scheduled for a week or two from now. Fortunately, last week the fever disappeared entirely. Gone. I’m pretty sure if the cancer was back, and was causing the fever, it wouldn’t have gone away on its own. And that makes me feel better.

Right around the time that I was dealing with the fever I was hit with a giant helping of fatigue. I could sleep from midnight until 11am, wake up long enough to eat something and take my pills, and then nap until evening. I didn’t have the energy to do much of anything, and it made me grumpy. And being grumpy made me even grumpier! But that’s all starting to pass, too.

Now, with a short nap, I can be a pretty good citizen of the world for most of the day.

Status report: dizzy spells are just about all gone, fever is toast, and fatigue is improving.


May 13 10

Dizzy Is Not Just a Character on Starship Troopers

by Tom

It’s been nearly three weeks since my last post, making this just about five weeks that I’ve been out of the hospital now. Well, not exactly. We’ll get to that.

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.

Apr 24 10

Improving Constantly

by Tom

I’ve been home for two weeks now, and most of the things that bugged me last week are getting better. My feet and legs seem to be less restless. Last week, sitting here typing, my legs would be bouncing up and down. I’d be growing uncomfortable. Not so anymore.¬†I still notice my legs feeling exhausted when I wake up, so they must be doing something while I sleep.

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.

Apr 15 10

How’s It Going

by Tom

I’ve been home for about half a week; in the beginning it was at once exciting, relieving, and frightening. Exciting and relieving for obvious reasons. Frightening because I was leaving the close attention of nurses and doctors that the hospital provided.

The last few days have eliminated that fright.

In the hospital, and early this week, I was noticing that I had trouble reading things from certain distances. I bumped the resolution on my monitor so things would be larger, and they were still fuzzy unless I was up close. My mom brought along a pair of cheap reading glasses and those helped clear things up.

Now I don’t need them anymore. They make things fuzzier. I still haven’t changed my monitor’s resolution back, but I can read the screen again. Victory!

My feet and legs still do the strange thing where they like to tense up. I feel like it’s been improving, but it’s still around. It will be easier to mark progress when it disappears entirely.

In the hospital, near the middle of my stay, I was able to write and commit some code on an open-source authentication module for the Kohana framework. Shortly after that, I lost the concentration to continue doing programming work (or much anything else) on the computer. This week, I’ve been building the amount of code I write each day; some of it even contributing to work projects. That’s right, I’ve even been doing work on my first week home. Victory again!

My conclusion is that most of my recovery requires having left the hospital. I don’t know how much of this progress I would have made so soon if I hadn’t been so adamant about getting discharged on Sunday.

My energy level is still low, but I set a few records on some of the Wii Fit balance games today. More victory! A little bit more exercise every day should build how far I can walk. The only annoying thing right now is that I banged up my toe nail (large one on the left foot) while I was in the hospital. It’s been getting wrapped up with gauze and antibiotic ointment, and barely fits in a sock. Definitely not in a shoe. So any walking that I’ve been doing has been in socks and sandals, the size of which make walking more like shuffling. Once my toenail figures out if it’s staying or going, my walking distance should greatly improve.

Also very important: I have been sleeping so much better at home than I was in the hospital. In the hospital I would be lucky to get an hour or two at a time, and then lay awake for an hour or two. Here I’ve been able to go three or four hours before waking up for a position change. It can’t hurt that there isn’t someone coming in approximately every four hours to check my blood pressure and temperature.¬†Sleeping in my own bed, with my own charming wife, has made a drastic and victorious improvement in my sleeping habits.

Conclusion: being home is wonderful. Hospitals are helpful with their high-level of attention and care, but the independence of home lets you really start to heal.

Apr 11 10

Home Free

by Tom

I’m home! There was even a nice “Welcome Home Tom” sign on our front door. It’s good to be back.

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!

Apr 11 10

Can’t Sleep

by Tom

The hospital beds are getting increasing uncomfortable, and my excitement to go home today is coursing through my veins. How could I sleep at a time like this?

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!

Apr 10 10

Freedom Approaches

by Tom

It looks like they’re going to let me go home tomorrow. This is exciting! I’ve spent more time not living in our new rental house than I have actually in it! It will be good to be back.

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.

Apr 9 10


by Tom

My counts are high enough now for them to let me go. White blood cells? Check! Platelets? Out the roof! Neutrophils: appropriate amount!

What’s left is getting me eating again. During the worst of it all we switched me over to getting my nutrients through an IV bag. My stomach forgot how to eat during that time, so I need to retrain it. And we need to show that I can survive without the feed bag.

It sounds like they earliest they could be convinced of this is Sunday, so that is what I’m aiming for.

I just got a note in the main saying that my normal oncologist, Dr Kurt Norman, has left the practice where we were seeing him. We had a great rapport, and I am sad to hear him leave. Hopefully for better opportunities.

Apr 6 10

Well, I’m Still Here

by Tom

Day +13th, now, and things are similar to the way they were before. I’ve sunk into the depths of the embrace offered by TPN and a PCA. Its a bit liberating, if you don’t mind being shackled to an IV pole! Now, as my recovery commands, I must dig myself out of these liberating depths. Must be able to get most of my nutrition on my own, but have high enough counts, and must not need IV pain meds anymore. Gotta look somewhat self-sufficient before they’ll recommend me to go home.

My current project is teaching my body how to eat and drink on its own again, which is tough. Some drinks go down my throat well, but are too acidic for my stomach to handle yet. Cranapple, I’m looking at you.

Slowly we try water, we try juices, brothes, jellos, and eventually move into soft foods like potatoes and shakes.

A few days back I shared my WBC numbers from when they came in at 130k. The next day they were at 300k. Then 660k. Today 1,010k. Build-em-up!