History, Part III

My first round of chemo produced a lot of complications, but I didn't feel many of the side effects from the actual medications.  Yeah, all my hair fell out, I was nauseous some days, and all my energy was zapped, but considering what else was going on these things were pretty manageable.

When I was first admitted to the hospital my bone marrow was 100% blasts.  This meant that when a sample of my marrow was examined under a microscope "all" the cells visible were cancerous.  My first round of chemotherapy brought the percentage of blasts to around 10%, with remission considered to be >5% blasts.  So the first round did a lot of work, but I needed more chemo.

By now it was early July.  My immune system had recovered from the first round of chemo and was able to fight back the fungus to the lower lobe of my left lung.  But now we faced another problem:  how could the fungus be kept under control while I underwent more chemo?  It was clear from the first time that antifungals alone weren't enough.  I needed white blood cells to keep it in control.  So it was decided that I would receive transplanted white blood cells, a daily transfusion, to supply the necessary weapons while my body couldn't produce its own.  And it worked wonderfully.  The fungus was kept under control through the entire second round.

Again chemo consisted of two drugs given over a week starting in early July.  I forget what their drug names were but one was called "Smurf juice" because it was bright blue.  Most of the details are fuzzy, but IRael tells me that since the first round didn't put me into remission the drugs chosen for the second round were much stronger, thus hopefully avoiding the need for a third round.  It worked, I guess, I didn't need a third round, but they weren't kidding when they said the drugs were stronger the second time.

I didn't have much hair left to fall out, but it took until September before it really started growing again.  Which didn't bother me too much, I didn't have to shave for 8 weeks!  And it has since come back with a vengeance.

It also took until September before I stopped puking every morning (no exaggeration).  No matter what I did or what anti-nausea meds I took, as soon as I tried to get up for the day I would spend ten minutes next to the bed dry-heaving bile.  It was awful, I felt like I was pregnant.

My sense of taste changed for many foods after chemo too.  I used to eat four quarts of cottage cheese a week before I got sick (it was my favorite!), now I don't eat any.  There's just something about it, it's not the same.  Or this peanut sauce I eat with rice (my other favorite!), couldn't touch the stuff for about two months.  Like the sauce, most foods' tastes have returned to normal, but there are some things, like cottage cheese, I just don't like anymore.

Sure, the taste change and losing my hair was annoying, and throwing up isn't a great way to start each day, but the worst part of round two was the mucositis I had during July.  My entire mouth was a giant canker sore.  The tissue starting from the back of my teeth all the way down my throat and tongue was completely raw; the chemotherapy had killed all these fast-growing cells.  I couldn't talk, I couldn't eat, I couldn't even open my mouth and I looked like a chipmunk from the swelling.  They couldn't give me meds strong enough to ease the pain and the sores lasted several weeks.  The nurses did give me a yonker - a hard plastic tube hooked up to suction that I used to clean the sores.  I would sit for what felt like hours and just suck dead tissue, blood, and other crap out of my mouth.  It felt amazingly good and was the only relief I could get.

Now imagine throwing up with sores like that in your mouth.  Yeah, chemotherapy sucks like that.

The sores (and probably chemo) also messed up my GI tract.  I couldn't eat so I was given IV nutrition called TPN.  Once the sores healed the doctors wanted me to start eating again... easier said than done.  Nothing tasted good.  Nothing smelled good.  Nothing even looked good.  I would take a couple bites and my stomach would get upset.  My body had become so un-accustomed to food it took a few weeks of trying my hardest to eat before I was able to stop TPN.  Getting out of the hospital (and back to REAL food!) was probably my biggest motivator to eat :)

I ended up back in the ICU once during July.  I was diagnosed with a Vancomycin-Resistant Enterococcus infection in my right lung.  Since my left lung was so compromised by the fungus it didn't take much for the Enterococcus to impair my breathing.  I was pumped full of antibiotics and was out of the ICU within a couple days.  Because it was an antibiotic-resistant microbacterium I was placed under contact restrictions - anytime a nurse, doctor, or hospital worker came into my room they had to wear a disposable body cover that they would then remove as they exited the room.  It was funny to see an entourage of doctors suiting up each time they'd come in the room.

July wasn't all bad, however.  By the middle of the month my kidneys had began to function well enough that I no longer needed dialysis.  The chemo was successful, bringing me to 0.3% blasts, well below the 5% cutoff rate for remission status.  Very good news indeed.

I was finally discharged from the hospital on 04 August 2009, 65 days after being admitted.  I continued TPN at home for about a week before I was eating enough by mouth that the nutritionist felt comfortable removing the TPN.  I also continued two IV antifungals, caspofungin and amphotericin, and had a slew of pills to take.  I had lost about 40 pounds, most of which was muscle.  I got tired really fast and still spent a lot of time sleeping, but I was happy to be out.  I was able to go outside, see my friends, eat whatever I wanted, and sleep in my own bed...all things I missed dearly while in the hospital.

August brought lots of doctor appointments and slow recovery, but recovery none the less.  By September I was feeling pretty good.  All the nasty side-effects from chemotherapy had resolved and I was able to resume many of my normal activities.  But my kidneys were still a real issue, their function levels fluctuated as the doctors wondered how much damage they actually took.  The fungus was still around too, but its days were numbered.  It would soon encounter a force it couldn't reckon with - the scalpel.