Monday, February 23, 2009

18 months out and a clean scan

I returned to Sloan this morning (day +552) with my mom for a checkup and to receive the results of my PET-CT scan from last week. It was Dr. C-M's turn on the transplant ward, so I saw Dr. Barker. My blood counts remain robust, which is good news. Another bit of promising news is that she decided to begin the tapering of my Tacrolimus dosage by reducing it from 1.25mg to 1mg and also reduce the Magnesium supplements (used to replenish the Magnesium lost as a result of the Tacrolimus) from 3 pills three times daily to 3 pills twice daily. My Tacrolimus dosage hadn't changed since the summer when it was bumped up due to the manifestation of GVHD and this is the first time ever that the Magnesium has been reduced.

The ultimate goal is to get me off the Tacrolimus completely (not to the mention the 7 other daily medications), but it's a tricky process. The longer my dosage remains at an elevated level, the greater the risk for relapse. At the same time, reducing it too quickly might upset the T-cells and worsen the GVHD. So, there's this delicate balancing act which the doctors themselves are fine-tuning gently. Caution is key (which is why I was told to look out for any adverse changes as a result of the lower Tacrolimus dosage).

I told her (as I did Dr. C-M and the staff) that my right foot has the irritating habit of clamping up at times. At a previous appointment, Dr. C-M told me that it's neuropathy and like him, Dr. Barker said that it should improve as the Tacrolimus is reduced. However, whether the neuropathy improves to a point where it's completely gone or it remains there but better is up in the air. We'll just have to wait and see. I'd be really disappointed if the numbness continues after I'm weaned off the immunosuppressive. I'm an avid walker and a lifelong case of neuropathy might upset this joy as well as some of my ambitious hiking plans, like the one that got scuttled for Glacier National Park last summer. I haven't spent a lot of mental energy thinking about this possibility as the condition has been tolerable and it is just too early to know the outcome, but a bit of concern is there. But hey, I'm alive and when I asked Dr. Barker for checkup on my current post-transplant status, she said "I'm coasting." What more is there to want?

With regards to the subject that I imagine everyone is most interested in, the PET-CT scan is clean. NED, baby! Sunday, February 21st marked 18 months since my transplant and as Dr. Barker said all continues to go very well. My next scan, she said, won't be for another 6 months (at the second year anniversary in August) and afterwards most likely, scans will be administered on a yearly basis. I see my doctor for my next checkup in 6 weeks.

My 29th birthday is approaching rapidly. I couldn't have received a better present than the news that I heard today. These past 18 months have put my mettle to the test and despite the many ups and downs, I feel hopeful that eventhough my future is far from clear that things are looking up.

Mindful of my many friends, who weren't able to celebrate a similar milestone in their journeys, I feel an extreme degree of humility and thankfulness looking forward.


Comment Anonymous Heidi said...

Woohoo! Clean scans, that truly is fantastic news! So glad to hear it, celebrating with you.

11:45 PM  
Comment Blogger Sarah said...

Three cheers and an (early) Happy Birthday! What a present, indeed. I'm SO so happy to hear about the clean scans, Duane! As always, you're in our thoughts!

Sarah and Scott

11:50 PM  
Comment Anonymous EFG said...

only one word describes your good news "YES"!!!!!!!!!!!!


8:51 AM  
Comment Anonymous Anonymous said...

NED is in the house baby!!!!

11:08 AM  
Comment Blogger Adrienne said...

Couldn't ask for better news. Congraulations. Love, Alison and Adrienne

11:15 AM  
Comment Blogger Kevin said...


2:05 PM  
Comment Blogger Kelly Kane said...

Such great news, Duane! You've come a long way my friend! I hope you're out celebrating!!


3:55 PM  
Comment Blogger Tom (dB) said...

That's great news, Duane. I'm coming up to 2 years post transplant now.

Congratulations and keep fighting!


5:50 AM  
Comment Blogger One Mother with Cancer said...


I just wanted to stop by and thank you so much for your kind words. Then I came across this post, that is such wonderful news. I hope things continue to improve for you.


11:59 AM  
Comment Blogger Duane said...

Thanks everyone. Love to you all.

6:11 PM  
Comment Blogger Kathy - Eric's Mom said...

Duane - what awesome news! Coasting with NED has quite the ring to it!

Kathy and Eric

7:28 AM  
Comment Blogger navyman67 said...

Duane - I don't check your wonderful site near enough, but you know how impressed I am with it, and you, of course. Nice photo and once again congratulations on your recent clean scan. I read the Huffington Post about Hillary...Cancer Warrior Princess...inspiring, simply inspiring.

I just had to click on "I Love Radiation" and Heather's story (as I Loved Radiation too!)...what is NOT INSPIRING on this fantastic site. I always enjoy your latest photos and I am so glad that you enjoyed the visit to the museum last weekend and the Thomas Chambers exhibit. Your photographs are superb as always. Please also know that those two photographs that you honored us with [Navyman and his wife], have been hung in a place of honor. Thank you again.

I also caught up with the latest issues of Bridges. You are doing a great job and seeing your name on the board and your photo credits, warms my heart.

You are always on my mind and in my prayers,


1:41 PM  

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