Monday, April 06, 2009

day +594

Today started with my checkup at Dr. C-M's office. Everything continues to go as well as one could hope. The chronic GvHD remains, but thankfully, it hasn't worsened. My parents and medical staff think the complexion of my face has improved over the course of the past several months. I happen to agree. The hyperpigmentation, which is also present on my lower lip and penis, looks the same as it did many months ago. But again, the changes to my face caused by the GvHD are cosmetic and unless told, most people wouldn't notice them at first. I'd far rather have this tiny issue than GI or other more serious problems resulting from a donor transplant.

The one day-to-day nuisance is the stiffness of my toes and feet. Whenever I'm in clinic, I inform them of any issues (ongoing or resolved), so I brought this up. I also told my doctor that a few days earlier I started to do a few toe and feet stretching exercises. I found them in Bob Anderson's classic, Stretching. Why I thought about doing this only now? I have no idea. No one ever mentioned stretching as a possibility. Nevertheless, he agreed that such exercises may alleviate some of the pain.

All my past treatments and the continued use of Tacrolimus, he said, are together the likely causes of the neuropathy. But this should improve with the tapering over time. Though for the moment, my present dosage will remain at 1mL. In three months, he said he'll probably reduce it a bit more. Tapering, he reiterated, is a tricky, balancing act. Tapering too quickly can induce a GvHD flare up which would cause more harm than good.

My next follow-up is not for three months. I can't recall ever being away from the clinic for so long.

Afterwards, I participated in a shooting for an ad campaign. No, I was not shooting. I was the one being shot. Sloan is creating a variety or print, radio, and TV ads for its third annual Rock & Run on the River, which will take place on June 7th. I was asked to be one of the event's faces to which I agreed. Some ads will be published in the New York Times, Time Out New York, and elsewhere. I have no idea yet where any images of me will be.

The staff at the media publishing company were fantastic. It was a pretty cool experience. I've never smiled or blinked as many times in my life.

After the shoot, I had about an hour to burn before tutoring. Last week as I was en route to the tutoring site in the Flatiron District, I stumbled upon a small, intimate European-styled cafe on Madison Avenue. I stepped in and ordered a chai latte (a favorite of mine) to go, but while I was waiting I was charmed by the cafe's flavorful decor. Located only about 4 blocks north of the tutoring site, I went there for another chai latte this afternoon and sat down to read and enjoy the ambiance.

It turns out that the gentleman working there is Tunisian. I think he's the owner, but I'm not sure. Anyway, I struck up a conversation with him asking if the music being played was by Fairouz, the famous Lebanese singer. Indeed, it was. I took this opening to initiate a conversation in Arabic, which I hadn't spoken since my time in Chicago. Sadly, I was a little rusty at first but after a few embarrassing pauses and mishaps, the vocabulary and verb conjugations began to flow more and more easily. It was thrilling. Despite all the hours I've spent studying the language over the many years, I have become lazy. Primarily it's because my interests since my transplant have been focused in other areas and I felt little drive to keep up with it. But today's revitalizing experience in the cafe made me think again. I'm planning to spend some time each day reviewing Arabic as well as perhaps becoming something of a regular at this cafe. It's a great place to spend some time before tutoring.

The neighborhood itself - the Flatiron District - is pretty cool. It's an area of Manhattan that I almost never visit, but volunteering has given me the opportunity to explore it. One of the cool historical facts that I learned last week is that the august New York Life Building used to be the location where the famous P.T. Barnum's velodrome (or oval racing track) existed. It was the home of the original Madison Square Garden, which makes sense since the elegant park directly opposite it is called Madison Square Park. And Madison Avenue was named after President James Madison. There's an interesting statue of President Chester Arthur in the park too. Why? I have no clue. And finally, Madison Avenue begins just south of the New York Life Building at 23rd Street and runs uptown ending at something of interest to me: the Madison Avenue Bridge.

The day was cloudy and wet, but it was glorious nonetheless.


Comment Anonymous EFG said...

wow 3 months till your next Dr.C-M appointment.
keep up the good work!
Am excited to see you in the MSKCC ads.


12:15 PM  
Comment Blogger Michelle said...

Hey Duane,
We should meet up at your favorite cafe for a chai latte!!

Let me know OK?


4:36 PM  
Comment Anonymous Dennis Pyritz, RN said...

Just ran across your great blog. Hang in there. I am +1700 days post allogeneic transplant. Most of my GvHD has subsided though I remain blind in one eye post-shingles infection. I just started a new blog - Please check it out. Dennis

11:09 AM  
Comment Blogger Duane said...

Thanks Dennis for commenting! I'll check out your blog.

5:43 PM  

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