Tuesday, February 05, 2008

day +168

For most of the morning, I had been watching the Giants' ticker tape parade up Broadway and at this very moment as I compose this post, I'm watching their victory ceremony on the steps of City Hall. What a sight! Wow. What a great day for the city! Go G-Men! (I was surprised to learn that Super Bowl XLII was the most watched Super Bowl ever. Impressive. Read here).

So much has been happening during the past couple of days: from the South Street Seaport Museum to the Giants' Super Bowl win to the still photography permit to my medical checkup to Super "Duper" Tuesday.

First, on Saturday afternoon I went down to the South Street Seaport Museum where I met up with Su and we watched the documentary film, City of Water, which is about the history and future of the NYC waterfront. Since my bridge project is related to the issue of the use and appreciation of the city's waterfront, I was very interested to see what I might learn from this film. Though only about 30 minutes in length, I think it gave a very good introduction to the issues that are at hand. About 20 people, I guess, were in attendance to see this screening of City of Water, and moreover, this was my first time seeing a film in a public venue since my transplant more than 5 months ago. At first, I was a bit reluctant to wear my surgical mask but as more and more people entered the screening room, I realized it best that I put on.

Early Sunday evening just after sunset I was on the Bronx side of 145th Street Bridge to take long exposure shots of the streaming traffic there. Back on Thursday, I received my very first still photography permit from the MOFTB for photography on the bridge, so I was ready to go. The twilight sky was quite spectacular Sunday as well, which I think helped to make some shots a bit more impressive than when I last did long exposure photography on the 145th Street Bridge.

I found myself back at Sloan yesterday morning for a checkup as well as a bone marrow aspiration/biopsy. Both went quite well. The last time I had the aspiration Dr. Castro-Malaspina himself did it but that was because the nurse who does it generally was on vacation. This time the nurse was there, so she did it and I must say that she did a pretty good job. There was, of course, some discomfort but it wasn't that bad. Following the aspiration, Clare and I saw Dr. Castro-Malaspina who said I am continuing to do very well. My counts were fine yesterday. The rashes are still present on my chest and shoulders though improved and those on my back have disappeared. Seeing that I'm doing well so far, he is continuing to taper down my Sirolimus dosage. Beginning tomorrow I must reduce it from .3mL to .25mL and then starting on the 25th, I'm instructed to reduce it further to .2mL. My dosage of Tacrolimus (Prograf), however, has remained the same at 2.5mL. Interestingly, I learned that one of the side effects of Tacrolimus is rapid hair growth.

At our appointment, he for the first time proposed that I start preparing for the future. Though I'm not in the clear fully, he acknowledged that I'm emerging from this state of limbo, progressing on the right track and at this point in my journey, I should start thinking about my life after transplantation. What do I want do? Where do I want to go? Honestly, I was kinda thrown off by his admission. I didn't expect to hear him tell me that I was doing well enough thus far to actually start thinking seriously about my next step. In response, I told him that though I have thought about returning to school, I haven't focused on it recently as returning to school seemed distant to me right now and moreover, I was keeping myself pretty busy with the photography. But his admission of hope has for the first time in some time made me revisit where I may want to be in say 9 months from now. At only 5 months post-transplant, I have such a long way to go but so far, so good.

A further boost of confidence was given when Dr. Castro-Malaspina told me that I could eat lettuce (not the prepared-bagged kind) and tomatoes if I desired to which tears welled up. I was so surprised. That moment of hearing that I was able to eat things seemingly so basic and easily taken for granted was emotional for me, because since transplantation I have been prohibited from eating raw, non-peelable fruits and vegetables. Despite the green light, my mom thinks I should wait a bit longer . . . perhaps until my (original) birthday next month. I agree. I'm in no rush. I've come this far already, so why jeopardize it. So far this winter, I haven't gotten sick. The last thing I want is to get be ill again.

I'm still scheduled to receive IVIG and Aerosolized Pentadimine this month and then, I'll see my doc on March 10th again.

To end, here's what I think is a great line in Fahrenheit 451, which I finished a few days ago:

See the world. It's more fantastic than any dream made or paid for in factories. Ask no guarantees, ask for no security, there was never such an animal. And if there were, it would be related to the great sloth which hangs upside down in a tree all day every day, sleeping its life away.


Comment Anonymous EFG said...

WOW, congratulations all the way around--
but most importantly for a good report from the doctor and a green light to start thinking about the future.
Duane--You deserve nothing but the best in life!!!


5:26 PM  
Comment Blogger skye said...

Glad to hear you got a good report from the doc--time to start making some future plans for yourself!!!

I was happy the Giants won! I mean, if the Packers couldn't compete, I at least got to see the Pats get schooled and saw Brady take a couple good shots! Maybe next year will be for the Pack!!!

By the way, I love your blog color scheme! I think, deep down, you're really a Packers fan.

6:07 PM  
Comment Blogger Duane said...

Hi Skye,

I agree. It was great to see GQ-Tom Brady get knocked around a bit. Moreover, Belichick is such a poor loser. The Packers are a really good team as this season proved and they will be back next year. :)

6:52 PM  
Comment Blogger Michelle J said...

Terrific news Duane! I'm really so very happy for you! Maybe, soon i will see you in Coney Island! :O)

9:50 PM  
Comment Blogger One Mother with Cancer said...

WOW!!! I'm glad that everything is going well for you, what great news...

1:03 PM  
Comment Blogger Veronica said...

Oh Duane - never have I been so happy to read someone's blog :0)

Delighted at all the good news you were given.........enjoy the feeling and here's to plenty more good news in the future......xx

2:57 PM  
Comment Blogger Duane said...

Many thanks everyone for your continued interest, support, and love. :)

8:05 PM  
Comment Blogger Bekah said...

Dearest Duane,

I love.. when doctors talk about the future. Your pictures are strong and solid, just as you are dear.

Hold on to your doctors words,
and know, we all are continuing to cheer you on.



3:44 PM  

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