Recap 3: life at home and relapse

How did my ‘situation normal’ become a SNAFU?

I came home after my stem cell transplant at the end of May. I was ready to resume my (semi-)normal life. The only thing preventing complete normalcy was a set of limitations around personal hygiene. See, my bone marrow had been replaced by my brother’s, and the new one takes a long time to build up a fully functional immune system. So I was starting off with a baby immune system, one which doesn’t know how to fight many diseases and infections. I would even need to re-get vaccinations nine months after my transplant.

In mid-June, I reached out to Facebook about returning to work. I couldn’t be in an office environment – too many people in an enclosed space, too many germs in the air, plus I couldn’t use public restrooms – so I found a team in NYC to work for remotely. It was super exciting to be back in the game. My new team seemed to have great culture, very supportive team members, and the work was exciting.

While I was stuck at home, I also had to avoid food from outside. No takeout and restaurants for at least 2-3 months. This was a bit of a pain in the ass, since I rarely cook, and when I do, it’s usually something very simple. Throw in some meat and veggies and stir fry it all. I couldn’t and didn’t want to eat this everyday, twice a day. So I had to get into cooking a little bit. I started looking into recipes, planning groceries a few days ahead, all that serious stuff. It was alright for a few months.

About 2 months and a half.

In August, I felt pressure in my chest, the same sensation I had in California when it all started. A few days later, a PET scan revealed the same thing as before but of a smaller size – a collection of leukemia cells in my chest. This was bad news, but there was a silver lining. Subsequent tests of the marrow and blood didn’t reveal any cancer, so the relapse was localized. This meant that the cancer could potentially be treated with local radiation therapy, which I went through for two weeks.

Unfortunately, when I saw my oncologist again a few weeks later, the cancer had spread all over my body. Now, it was a full-on relapse. I needed chemotherapy again. Late September, I was admitted to the hospital.

It would have been great if this meant it was back to the starting point, but it wasn’t. I was starting over with a handicap. With cancer, any treatment after a relapse has a lower chance of succeeding, and this proved to be true for me, because, after 45 days in the hospital – my longest admission so far – I was not in remission and went home with cancer cells still in my blood and marrow.

The doctors suggested an outpatient treatment plan, so I would come into the clinic to receive my medication then go home the same day. This failed too.

Which brings me to the hospital room I’m staying in right now. I got another round of chemo three weeks ago, tolerated it better than any of the previous rounds, and now just waiting for what comes next. The cells in my bone marrow and blood – good and bad – are practically wiped out. When the good ones rebound, there’s a slim chance that the bad ones don’t come back with them.

My story continues, and, hopefully, you’re now caught up.