Tuesday, May 15, 2007

Hoosier

Even here, nobody knows what a “Hoosier” is, so we can all stop losing sleep over it.

After a couple of days here, I am slowly getting used to our sterile, corporate apartment suite. Lacking a garden and any hope of charm, it has a number of redeeming features: it is clean, functional, and close to the hospital. And it has free wi-fi.

My mother, father, and I flew in on Sunday, and began both moving in and making headway in terms of treatment. I went in to the hospital, my new home-away-from-home-away-from-home-away-from-home (where do I live?), to get the third of many Neupogen (stem cell growth factor) shots. I was pleasantly surprised that all of the nursing staff seemed already to know who I was, and were all ready for me the moment I walked in the door. It has now been three days, and this remains true. I have not yet waited a single second in a waiting room! This place seems extraordinarily well-organized, which helps me feel like coming all this way was a good decision.

I got my central line installed yesterday, so I am back to being bionic. The tubes enter my body just above my nipple and visibly snake up just under my skin, looping over the top of the clavicle and down into the subclavian vein, following it into the right atrium of my heart. I am still sore from the procedure, and haven’t yet figured out how I am going to take a shower without getting the whole business wet.

I spent most of today in the hospital, the first of many such days here. Today, they collected the stem cells which will reconstitute my immune system after the chemotherapy. I spent a fair amount of time grilling people about various aspects of the procedure (how the machine works, how many cells they are collecting, how they are stored, etc), and slept the rest of the time. I got a call from the head of the transplant unit in the evening, relaying the good news that they had collected just enough stem cells in today’s collection that I wouldn’t need to repeat the procedure tomorrow. While I was happy to hear that things were going better than planned, I was not comfortable with the numbers. I had been told by a number of people who are involved in stem cell transplants that it was important to have plenty of viable stem cells in order for things to turn out well, and I was concerned that merely having “sufficient” numbers of cells to transplant was running an unnecessary risk. While the transplant doctor insisted that he believed that we had collected enough cells, he said that there was no problem with me repeating the collection tomorrow if it allayed my concern, and that he would set it up. On the one hand I feel kind of presumptuous second-guessing what is probably the most highly qualified team in the world for this procedure, and on the other hand, I don’t want to mess around. I am playing for every fraction of a percentage point I can get here, and if people are willing to humor me, I see no reason not to err on the side of caution. My immune system has served me pretty well up until now, and I would like it back, please.

9 comments:

lefty librarian said...

Showers? You don't need no freakin' showers, man!
Sorry. I couldn't help it.
Tell your tube I said what's up.
love.
heg

Anonymous said...

Thanks for the update Josh. I'm glad you pushed for more stem cell collection. Follow your instincts. They are good. Sending white light.
Love, Megan

Anonymous said...

Josh, thanks for keeping up the news stream. Sounds like you are off to a good start,
we toasted to your health tonight,
all the best,
Mary Anne and David

Andrew said...

Joshua,

I lit a candle for you this morning at the mysterious, amazing Duomo in Modena, Italy. It's a Romanesque building guarded on all sides by carved stone lions. The interior is all red: red brick, red and white marble. Seemed appropriate for your Leo-ness and for the fierceness of your fight to heal. Hold on to your fire.
Much love,
Andy (Zpora's dad)

Anonymous said...

I agree and think you should ask for anything that makes you feel more prepared, listened to and empowered. Listen to your intutition... you know your body best. Keep fighting, Jennifer

Unknown said...

Hi Joshie,
Let me be the first (ok maybe a little late for this) to welcome you to the midwest. Honestly I don't know anything about Indiana but you can mention to them how awesome Iowa is, so you've heard --bigger corn, fatter pigs, etc. Thanks for the postings, I'm so glad I can catch up on your life with just a click of a button.
Love ya,
Liz

Julie's Jaunts said...

Good for you Josh for pushing for more stem cells! That is absolutely the right move. It's your body, your intuition. That is what counts.

Glad to hear that you are getting settled in in your sterile but very functional place. We found that fake flowers and plants inexplicably made things better - I think there's some visual, primal connection to being in the midst of plants. Also, fake fish, really - they exist. It's like a fake fish aquarium thing seem to be really cool too.

All the Best wishes to you
Julie F ( wine friend )

Unknown said...

Hey Josh,

I know it's been a while since we've talked, but here's a blast from the past for what it's worth. I don't really know what to say, but I just want to let you know that I'm keeping up with your blog and that you have my support (and the support of the whole Joshi clan too)! We've both come a long way since Pacifica Montessori, and there's still a long way to go, so hang in there. Here's to a successful treatment and a speedy recovery. I'm counting on seeing you in good shape next time we meet!

Neel

CalifSherry said...

In years long gone, I would walk to work from my North Beach (SF) apt., stopping at a local coffee house for cappuchino and a morning read of the local paper and the NYT. Now, I sit in my jammies and sip from the information firehose that is DailyKos.

This morning, this story of grace and treatment jumped out at me. There is kinship in all this madness. I offer it as a little gift. http://www.dailykos.com/story/2007/6/5/21316/54605

Sherry