Tuesday, June 5, 2012

19 Years Later (in five parts) I

Or maybe just a few months, but it feels like a few years.

Sorry everyone who was worried, as it turns out, there are many of you. My bad.

So what the hell happened?

I'll tell you in a poem, but it's meant to be sung to the tune of "Twinkle, twinkle little star."

I stopped writing in late November when my oncologist told me I'd need to come back in for another round of chemotherapy, as the first round didn't get everything. I started on MEC and so my second hospital stay began. My good friend, Gator, came up for the first weekend and spent the night at the hospital. We watched a DVD of the Pinky and the Brain and although my spirits weren't exactly high at the time, it was exceptionally nice to have her there.

The next few weeks went by partially uneventfully. After getting through some of the side affects like eyes that felt as though they had just been dished a generous serving of pepper spray, things settled down. I admit my mental strength was beginning to waver so I started on a drug called celexa. It's an anti-depressent that worked well to keep me from falling too far emotionally. It was about this time when I was first really hit by the idea that this was going to be a long term endeavor.

Generally, this second round went much smoother physically, which made it much harder mentally. The first time around, I was hit with weird spikes in my blood results (see: 12,600 LDH), infections, wild fevers, and rigors, all of which did a good job of keeping my head pretty grounded in the here and now. The second time, it was all pretty smooth. But because I didn't have anything neat doing on medically, everything just got boring. I ended up losing more weight down to about 135 (remember I started around 160-165) mostly because I had little motivation. It kinda sucked, but man.. it was so much better than what was to come.

Meanwhile Kym and Bill were trying to plan their wedding, and a lot of things ended up happening in a short amount of time. To be very honest, there was absolutely no guarantee that the MEC was going to work. If it hadn't, the plan was still to take me into the transplant phase, but at the time there was no way to even guess what was going to happen. It was a bit scary. If I didn't respond to the MEC, there wasn't any common next step. At that point doctors just put together an experimental regimen of chemotherapy and hope for the best. My point is, in December, we didn't know how I was going to react or how long I might even live.

Kym and Bill had been planning a nice wedding for the Fall until I took an enormous dump on that and their focus shifted to making sure I was well. They talked it over and, given the uncertainty of the future, decided to get married right before my scheduled transplant admission, planning on me being there. I was discharged on the 17th of December, and began to have fevers. They were mild at first, so we decided to just watch them for the moment. I got a bone marrow biopsy to see if the chemo worked, and we were waiting for the results.

No answer yet from Onc. She gave us the go-ahead to move forward with our current plan, so we loaded up the car and headed for PA. My fevers began to increase, but only at around 3am and hitting around 100.2. 6am to 2am they tended to be normal. Still no answer from Onc.

It was now Christmas day. That afternoon, I knew I had to call Onc, though I didn't want to. I already missed a time to hang out with Gator and I was worried she'd have me come back to Boston.

I called her.

"Come back to Boston."


So Fumos, Kym, and I drove the 7 hour trek to Boston. Once again, just like my second admission, I was very bitter about all of this. I wasn't scared yet, because I didn't have the medical knowledge of Kym. But she later told me she was scared most during this time over any other time during my treatment. She feared tumor fevers. You know.. those things I was getting the week before my admission to hospital. The things that stem from a large number of cancer cells.

I was mad because I had to interrupt my time home with a 7-hour trip to the hospital, and Kym was worried that we might be back where we were in September. I'm glad she kept that to herself at the time. So I got a CT scan and stayed at Kym's place that night. The next morning (Wednesday) I had a meeting with infectious diseases, and the Doc told me that there were fungal nodules (like you see mold growing on bread) in my lungs, inside my liver, and inside my spleen.

I must admit that sounded pretty bad. 100 years ago, it probably would have been. But we lived in the Future now so it actually wasn't bad at all. I just needed to up my dose of Fluconazole to 600mg and I could go back home. Phew, missed a potentially fatal bullet on that one.

We had to pick something up before heading back, but made our way back to PA by nightfall. MY energy was low, so I rested.

And was woken up by a call from Onc at the break of dawn. You know. The time most people call other people. I heard Onc's voice. I woke up a little more.

"Hey I wanted to talk to you after you're meeting with Fetch yesterday. I have your results."

"Oh! Yeah sorry we kinda booked it out of there. I didn't realize you wanted to see me."

"That's ok. I wanted to let you know you're in remission.



I remember that word just floating there accidental-like on a breeze.

"Oh! ... uhh.. great, thanks! So I guess we're still on track for the transplant then?"

"Yep, everything will go to schedule for now."

"Great. Great.. well, thanks so much. This is really great news!"

I hung up the phone and put my head down, but not before sending a few text messages first.


My family was coming into town. The final wedding preparations were coming together. Kym and Bill, a guy and girl who sacrificed anything and everything they needed to without question for my benefit (including their wedding date) were getting hitched in three days. I was lying peacefully in my room at my parents' house, and the cold sky was silver-blue out the window. I couldn't've been happier.


It was Wednesday Morning, it was 3 days after Christmas, and 82 days earlier a New York oncologist looked me in the eye and told me I had cancer.

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