mike reed

For some time, I haven't kept up with the Hodge blogs that I used to follow faithfully during and immediately after transplant.  This evening, however, was that rare exception and while I browsed the Hodgkins universe was saddened to learn the tragic news that a fellow prizefighter and long-term survivor, Mike Reed, passed away just before Christmas at age 32.

He faced both Hodgkin's and myelodysplastic syndrome (MDS) bravely for many years.  Please visit his blog and offer words of encouragement to his lovely wife and dear son. 

i had cancer

I Had Cancer is another helpful online resource although its mission is very different than BMT InfoNet.  It is a new and rapidly growing social networking website devoted to fostering friendship and community for people of all cancer diagnoses.  It is its creators' hope that such a virtual community will give people the support and strength to deal more effectively with their life before, during, and after treatment. 

Read more about I Had Cancer in recent media reviews.

helpful transplant webcasts

BMT InfoNet is a great resource for all things cancer transplant related.  In particular, it has an especially good list of webcasts covering GvHD, emotional health, employment, fatigue, fertility, and more.  During the past few months, BMT InfoNet has uploaded new webcasts, which I wanted to highlight.  All are available for streamline or download.

In Managing Skin GvHD, Dr. Maria Turner of the National Institutes of Health and Dr. Fiona Zwald of Emory University will examine:

• how chronic GvHD can affect the skin
• treatments available to treat dry skin
• what causes itching and how to treat it
• steps to take to manage contractures
• erosions and ulcers
• medications that can aggravate skin GvHD
• the risk of skin cancer in patients with GvHD

This presentation can be viewed online or downloaded to your computer.

In Stem Cells: A Primer, Dr. Laura Michaelis of Loyola University reviews:

• the difference between stem cells used in transplant and embryonic stem cells
• how blood stem cells grow into a new immune system
• how bone marrow and stem cell transplants differ

This presentation can be viewed online or downloaded to your computer.

Finally, in Survivorship Resources on the Internet, Susan Steward, Executive Director of BMT InfoNet reviews resources on the internet that have information specifically designed for bone marrow, stem cell and cord blood transplant survivors.  Learn about key websites, chat rooms and list-serves that connect you with information about the issues you may encounter after transplant and link you with others facing similar challenges.

This presentation can be viewed online or downloaded to your computer.

searching for my donor in a subway car

I wrote an essay describing the special bond between my donor and me, which was published in the winter issue of the Bridges newsletter.  It is called "Searching for My Donor in a Subway Car" and can be found on page six.  I hope you enjoy it.

the loss of a friend

On Thursday I returned to MSKCC for a check-up. My oncologist thinks the pigment of my skin continues to return slowly to normal, but it's a very slow process. At this point, he doesn't think the skin creams - Fluocinonide and Alclometasone Dipropionate - are doing much anymore. Tacrolimus and CellCept remain the prime agents of change in my drug cocktail. My weight was stable: about 149 lbs. My blood counts and kidney function were very good. I'm always concerned about the state of my kidneys due to all the medications I take and the fact that I sometimes find it challenging to hydrate myself enough during the day.

The course of action remains the same: no change in medication. Cautiously, he wants to wait a little longer before possibly making any changes. I'm scheduled to go back in six weeks for a blood draw and then, see Dr. CM again on March 8th.

Everything remains very positive.

During the upcoming winter break, I will have a number of medical checkups. This past week I scheduled an appointment with my podiatrist, because my nails (especially my toenails) continue to change months after having GvHD. They are not healthy. They are brittle and have have streaks running from top to bottom. Some are have not developed fully yet. I'm curious to listen to his impressions and what possible recommendations he might have.

Yesterday morning I attended the funeral of one of my great supporters while I was sick. Despite her own challenges with multiple sclerosis, she continued to reach out and help others in need. When I was navigating the complex world of insurances and premiums, she was there to guide me. If it wasn't for the compassion and help of Muriel and so many others, who knows where I would be today. Thank you, Muriel, we will miss you.

The bridges of new york

Published in 1977, Sharon Reier's The Bridges of New York is a very rich and informative resource about the history of city's many spans, but its dated. In her study of the Harlem River bridges, she wrote:

Today, much of The Bronx is considered a disaster area. Few travel there for nostalgic sightseeing. . . . Although the Harlem is spanned by 14 bridges within its five miles, and a walking tour is physically possible, it is not a recommended journey. The bridges, especially at the eastern [Bronx] side of the river, are surrounded by impersonal housing projects, industrial sections, and expressways which are best unpleasant and at worst quite dangerous. The same is sometimes true for the parks which adjoin High Bridge and the Washington Bridge. Two safer ways of examining these structures are from a train on the Hudson division of the Penn Central, as previously mentioned, or from a boat below. The Circle Line excursion boats are more reliable for bridge watching than most private craft, as the currents of the Harlem are notoriously tricky and may require full attention. Another alternative for courageous bridge explorers is the bicycle.

While industry's grip on the Bronx side of the Harlem River remains, the area is much improved from Reier's description in the 1970s.

day +1544

Before work on Thursday, I went to Sloan-Kettering because I needed to have my Tacrolimus levels tested before my appointment at 3:30 that afternoon. With Tacrolimus, labs must be drawn before breakfast which is why I had to go before work.

I left work early to make the appointment but I was still late. Everything looks good and remains steady, my doctor told me. My counts were normal. While my skin continues to improve though very slowly. My chest and belly are clearing up faster than my back, however. My knees, especially the right one, which have been sources of pain have felt much better during the past two weeks. My nails remain brittle. My nurse instructed me to keep them well-filed and short. The regeneration process is still visible especially with my toenails. Part of the new nails is visible at the same time that the old nails are eroding. Amazing and freaky.

No changes were made to my med list.

I return on December 8th for my next follow-up.

In other news, I found out late this week that I was awarded a 2011 SAMFund scholarship. I will put it towards my student loans. I am so grateful for the generosity of the SAMFund organization and its supporters. Thank you, SAMfund! If you're a young adult survivor, I encourage you to apply next year. It's a wonderful opportunity.

day +1538

This morning was spent photographing the runners in the ING New York City Marathon cross the Madison Avenue Bridge into Manhattan. It was a gorgeous fall Sunday. Simply perfect. I look forward to seeing how the photographs came out.

Since returning to work in early September, I've been incredibly busy. I've also started a MA program (part-time) at Teachers College, Columbia University during that same time. Hence, the absence of posts since September. At TC, I'm taking two courses - US History and Diversity in the Social Studies curriculum - this semester but will drop to one in the spring, because it has become increasingly challenging to do all the assigned work well. Nevertheless, I'm enjoying my courses learning a lot. I estimate that it will take me 2 - 2 1/2 years to finish.

Healthwise, I continue to take a lot of meds. My right knee still causes pain although it has been better recently. I've made an appointment to see a rehabilitation specialist/physiatrist in December. I haven't lost the weight that I gained from the steroids over the summer. It has been difficult to find time to exercise besides the fact that mentally, I just haven't been able to focus my mind on it. On Thursday, I see Dr. C-M for a checkup.