Early this morning, I returned to my cardiologist's office for a cholesterol test followed by another immunization at the office of the infection disease specialist.
But I spent the afternoon watching two films. First, The Secret of Kells, which won the 2010 Academy Award for Best Animated Feature followed by the meticulously detailed and styled A Single Man.
posted by Duane @ 5:43 PM
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So, today marks the beginning of the second week of our spring break. We return to school next Tuesday.
Last week was occupied by medical appointments mostly. On Monday, I had my six-month PET scan; I had an appointment with my ophthalmologist and an infectious disease specialist on the following day; on Wednesday, my dentist replaced two old fillings; and then, I had an appointment with my cardiologist followed by Dr. C-M on Thursday.
All of the appointments went well. My PET scan was clean. NED once again! With regards to the complexion of my face, it looks like the GVHD might be burning out. Dr. C-M said the complexion of my face is much better, which I agree. Signs of GVHD, however, still remain on my penis and even less so, on my lower lip. But in all honesty, the skin discoloration is a minor cosmetic issue. It's not a big deal.
Considering how well I'm doing, he decided to begin to slowly taper the Tacrolimus once again. I had been taking 0.5mg of Tacrolimus twice daily. I've been ordered to continue the twice daily routine except on Wednesdays and Sundays in which case I'll take just one capsule. Dr. C-M also reduced my Folic Acid dosage from 5 to 3 tablets daily and Magnesium Soy Protein dosage from 2 tablets twice daily to 2 tablets daily. The other four medications (Penicillin VK, Acyclovir, Voriconazole, Multivitamin) that I take remain the same for now and I imagine for the foreseeable future.
I was due to receive Tdap (Boostrix) in August, but my immune system responded well enough to the series of Adult Td (tetanus and diptheria) vaccine that I received late last year that Tdap is not needed. Since I'm still on Tacrolimus, the immunosuppressive, my immune function isn't normal but it's holding its own.
On Tuesday, the infectious disease specialist gave me the vaccine for typhoid, which I hadn't received yet. Barring Pneumovax which I'm scheduled to receive next month, I've completed all my base immunizations which is amazing.
Dr. C-M wants me to see him again in mid-June.
So far during this break, I've managed to do a bit of photography. I have a couple of sites lined up for this week that I'd like to visit which should be lots of fun.
Finally, sorry for the blue abyss you see at the top of the page. The server that hosts it is down, but I'm working to find a replacement.
Enjoy the week!
posted by Duane @ 4:17 PM
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Starting April 15th from 7:00-8:30 pm EST, the National Bone Marrow Transplant Link (nbmtLINK) will host a free telephone support group titled Coping with Chronic Graft vs Host Disease for the BMT Patient/Survivor.
The group will continue for three more consecutive Thursday evenings.
For additional information or to register, please contact Tiffany Rowe at tiffanyrowe@nbmtlink.org or 800-546-5268.
posted by Duane @ 3:58 PM
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The Leukemia & Lymphoma Society has a couple of upcoming telephone/webcasts:
Childhood Leukemia and Lymphoma: Update on Treatment and Follow-up Care
CML: Understanding Your Treatment Options
posted by Duane @ 3:43 PM
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The OMG! 3rd Annual Cancer Summit for Young Adults organized by the Leukemia & Lymphoma Society and i2y will take place on Sunday, May 23rd at Pace University in New York City. Admission is free. Registration begins April 5th.
Keynote speakers and panelists will include Ethan Zohn of 2002 Survivor: Africa, Matthew Zachery of i2y, Jonny Imerman of Imerman Angels, and Karon Rosenthal of Everything Changes: The Insider's Guide to Cancer in Your 20's and 30's.
posted by Duane @ 1:49 PM
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BMT InfoNet published information about the following research study recently:
Are you a young adult between the ages of 22-29 who was diagnosed in the last 18-30 months with either relapsed lymphoma (your disease came back) or refractory lymphoma (your disease did not respond to treatment)?
If so, you may be eligible to participate in a dissertation research study to better understand the experiences of people who have gone through relapsed or refractory lymphoma in young adulthood. This study involves two phases: 1) one face-to-face interview and 2) email interviews with the researcher.
If you are interested in participating, please contact Jennifer Mills, LMSW, MPH, New York University School of Social Work at yaresearch@gmail.com for additional information.
posted by Duane @ 7:15 PM
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This week the staff at the LP, where I continue to volunteer on Monday evenings, shared this story about a student's inspirational progress and successes: 'It's never too late to learn.'
The first-half of this rainy, blustery Saturday was spent at a technology workshop for work from which I took away some helpful ideas and tools to introduce into the classroom. From there, I finally saw Crazy Heart for which Jeff Bridges just won the Academy Award for Best Actor.
A gripping, beautiful story!!
Finally, the Annual Patient Art Exhibition at Sloan-Kettering will be held in mid-April. Presently, I'm ordering prints of my photographs to see which six I will frame next week and then, showcase in the show next month. I have a couple of exciting images that I think will be received well.
posted by Duane @ 9:48 PM
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The nbmtLINK's Suvivorship Guide for Bone Marrow/Stem Cell Transplant Coping with Late Effects by Karen Stronach is available in PDF now. Download it here.
posted by Duane @ 9:28 PM
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I first saw the following video called The Known Universe at the Rubin Museum of Art's exhibition, Visions of the Cosmos, a few weeks ago. After some searching, I found it finally where else but on YouTube.
Pretty awesome! Cosmic!
posted by Duane @ 9:31 PM
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What a wonderful birthday weekend!
Thursday night was spent at home enjoying a celebratory pizza with my mom and sister.
Friday evening after work I celebrated doing one of the things I enjoy most: night photography. I snapped this shot from the southern side of the Washington Bridge:
And then, last night was spent celebrating with ten friends over sumptuous Thai food followed by live music and dance in Manhattan.
Thanks to everyone for your kindness and generosity. Love and happiness to all!
posted by Duane @ 8:33 PM
3 Comments
Of course, most of us have known about the amazing life-saving potential of cord blood transplantation for some time. Indeed, some of us are alive today because of it. It's great to see the word being spread, nevertheless. In addition, it's always comforting when the stories and needs of the transplant community are shared with the wider public.
posted by Duane @ 4:38 PM
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I was diagnosed with Hodgkin's Lymphoma in late 2003, but it wasn't until after learning about my first relapse in the summer of 2005 at which time I discovered the dozens of inspirational stories of other survivors on the Internet that I decided to make this blog a reality. Since 2007, I've been cancer-free. I hope that cancer survivors and their families will be able to take something from this that will help them in their own journey.
