The Journal of a Prizefighter

mike reed

2011-12-28T20:58:00.000-05:00

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

2011-12-28T13:32:00.000-05:00

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

2011-12-28T13:04:00.001-05:00

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

2011-12-11T16:22:00.001-05:00

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

2011-12-11T09:12:00.002-05:00

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

2011-11-12T16:15:00.002-05:00

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

2011-11-12T14:56:00.003-05:00

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

2011-11-06T15:56:00.004-05:00

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.

upcoming chronic gvhd teleconference

2011-09-11T12:51:00.001-04:00

blood cancer awareness

2011-09-02T11:31:00.004-04:00

September is Leukemia, Lymphoma, and Myeloma Awareness Month.

Read more about this on the Leukemia & Lymphoma Society website.

the militarization of cancer talk

2011-08-30T11:54:00.002-04:00

In Cancer: Fighting Words, Daniel Menaker explores the militarization of cancer talk with insightfulness and humor.

He ends his essay with a very funny note:

. . . surely some of us may gather strength from saying of those murderous invaders, in our best Churchillian cadences, “We shall fight them in the mediastinum, we shall fight them in the lymph nodes, we shall fight them in the trachea, we shall fight them in the pleura....”

day +1467

2011-08-27T11:52:00.014-04:00

It has begun to rain lightly in the Bronx. All mass transit is about to be suspended throughout the city in about 10 minutes in preparation for Irene.

I spent yesterday evening in Inwood Hill Park photographing the Henry Hudson Bridge, which was fun. Earlier in the day I had a few errands to take care of in Manhattan's Upper East Side, so I used the opportunity to check out the Met's current exhibition, Night Vision: Photography After Dark. This black-and-white show is small in scale (only 40 images) but very enriching. Most of the images date to the first three decades of the 20th century. While this exhibition wasn't the inspiration for me going up to Inwood Hill Park last night, it was rewarding to have learned more about the history of photographers who have attempted to capture their world in the dark.

One of the funnier stories that I came across in the exhibit is that of a early 20th century photographer (circa 1905, I think) who while photographing a subject one night is stopped and questioned about the purpose of his activity by a suspicious police officer. Night photography at this period was novel. Confused by the photographer's rather simple explanation, the police officer assumed he must be mentally-ill and expressed pity. It just reminded me that interactions between the police and photographers aren't new. Photography unlike other artistic media seems to naturally arouse suspicion by people who aren't familiar with it or who just are wary of an all-seeing lens in their immediate vicinity.

Finally, on an entirely different note August 21st marked the fourth anniversary of my allogeneic stem cell transplant. I had actually made a mistake thinking my anniversary was the 24th until I checked later.

limited time! free travel scholarship to colorado

2011-08-24T09:27:00.003-04:00

First Descents, which offers young adult cancer survivors a week-long outdoor adventure designed to help them reclaim their lives and make new friendships, has several spots remaining for its September 4- 9 rock climbing program in Estes Park, Colorado. It is offering full travel scholarships to any first-time participants who attend! Pretty sweet.

While this is a short notice, this is a great opportunity. I have at least two friends who participated in the whitewater kayaking program in Montana and they both had a very memorable experience.

If you're interested, apply here.

lymphoma news

2011-08-24T09:22:00.002-04:00

For the first time since 1977, the USDA Approves New Drug for Hodgkin's Lymphoma. In addition, this anti-body drug is applicable to patients who have already received a stem cell transplant.

quake and osteopenia

2011-08-23T15:24:00.004-04:00

About one hour before beginning this post, we felt the tremors caused by the 5.8 quake in Virginia. Wow. It was my first time experiencing a quake.

Back on August 1st, I saw my primary care doctor for a general checkup. He performed some basic tests, such as cholesterol and glucose (sugar), which MSKCC doesn't do because I am in post-transplant/survivorship phase. Four years out of transplant, tests such as these are reserved for the primary care doctors, I was told. Both the cholesterol and glucose returned back normal. At this appointment, he also recommended I go for a bone density exam due to my recent use of steroids in addition to my long history of treatment.

On the 10th, I went to Montefiore Medical Center (where my primary is affiliated and where I was first diagnosed and treated in 2003) for the bone density test and after playing phone-tag with my doctor for several days, we finally caught each other yesterday. He said I have the symptoms of osteopenia, which is less severe than osteoperosis, in my spine, hip, and elsewhere. Asked what I do for calcium, I replied that I take supplements (500mg twice daily). In addition to continuing to take the supplements, he proposed a once a year injection. I don't know its proper name, however. I'm not too keen on more drugs but honestly, I know nothing about it. I told him to send me copies of all the tests results and I will inform Dr. C-M to see what he thinks and then, we'll go from there.

We're having a couple of lovely, mild (mid 70s - low 80s) days in New York City. Just beautiful.

tacro redo

2011-08-19T09:05:00.006-04:00

My tacrolimus level was retaken yesterday morning in clinic. It turned out to be a bit higher than desired, so I need to go back on September 1st for a redo. After my blood was drawn, I received the IVIG treatment, which lasts for about 4 hours. It's pretty uneventful besides the induced drowsiness caused by the Benadryl, which is administered to lessen the risk of a violent reaction. I had brought a few books along to read but in the end, most of my time was spent sleeping interspersed with a little TV watching.

upcoming gvhd teleconference

2011-08-19T09:04:00.000-04:00

The National Bone Marrow Transplant Link (nbmtLINK) is presenting a free telephone conference and podcast titled "Understanding & Coping with Chronic Graft versus Host Disease" on Tuesday, November 11th from 7:00 - 8:15pm EST. Speakers will include experts from the Fred Hutchinson Cancer Research Center and the National Institutes of Health as well as a BMT survivor.

For more information and/or registration, call 800-546-5268 or email info@nbmtlink.org

financial webinar for young adult survivors

2011-08-19T09:01:00.001-04:00

The second in the SAMFund's free Webinar series, "Moving Forward with your Financial Health," which is designed to give concrete, reliable information about the unique financial challenges of young adult cancer survivors, will air on September 15th at 4pm EST. Joanna Morales, Esq., Director of the Cancer Legal Resource Center, will field questions.

Register here.

transplant symposium in atlanta

2011-08-19T08:56:00.005-04:00

From September 10-11, the Blood and Marrow Transplant Information Network (BMT InfoNet) will host a symposium in Atlanta focusing on post-transplant (autologous and allogeneic) surivorship. It will cover a myriad of topics, such as GvHD, social networking, wellness, and medical insurance.

Learn more and/or register here.

day +1452

2011-08-12T22:56:00.007-04:00

Yesterday morning I saw my doctor for a follow-up at Sloan. I noted the improvement to both my knees and shins. The recent tapering of the steroid, Budesonide, to one capsule daily explains the alleviation of pain, they said. In addition to these positive changes, I am not craving food as much as before which again is due to the tapering. I lost 1 lb from my previous visit. They instructed me to continue taking Budesonide until September 15th. For now, all my other medications remain the same.

With regard to my skin's appearance, both Dr. C-M and my dermatologist agreed that it will take a long time for the dark, hyper-pigmented areas to return to normal.

I'm scheduled to go back to Sloan on Thursday morning so that my Tacro level may be retested. It was lower than normal at this week's appointment. After the test, I will then receive Intravenous immunoglobulin (IVIG) to give a jolt to my compromised immune system. The last time I received IVIG was back in 2008, I believe, during the first several months after transplant. Almost three years later, hearing "IVIG" again was definitely a surprise.

Things are going in the right direction. While the steps are slow, the progress is clear.

in the news

2011-08-10T22:02:00.002-04:00

With graduate school beginning in a few weeks, I eagerly read the following news articles. Interestingly, with all the attention on the debt crisis, the one group which seems to have received the least coverage are young people and students.

Moody's Analytics Warns Student Loans May Be the Next Financial Bubble to Burst

Debt Deals Boosts Pell Grant Funding, Cuts Student Loans

when the water ends

2011-07-24T15:06:00.008-04:00

Following the news coverage surrounding the worsening famine and refuge crisis on the Horn of Africa, I learned recently that a fellow Vassar alum had directed a stimulating sixteen-minute documentary last year about this issue. Titled When the Water Ends, Evan Abramson examines the devastating impact that drought has had on the neighboring tribes of Kenya and Ethiopia and the severe challenges that it will continue to pose to the region going forward. The documentary points out that the challenges of water shortage aren't of course limited to Africa although it's hit the hardest. It's a global problem, which promises to worsen due to climate change and a growing world population. Indeed, sizable areas of the American South and Southwest have been suffering from a lack of water for years.

As temperatures rise and water supplies dry up, semi-nomadic tribes along the Kenyan-Ethiopian border increasingly are coming into conflict. When the Water Ends focuses on how the worsening drought will pit groups and nations against one another. See the project at http://mediastorm.com/clients/when-the-water-ends-for-yale360

MediaStorm, the producer of this documentary, has also completed a number of other projects focusing on challenges of the human experience. Check out more of their work here.

dying to do letterman

2011-07-23T19:59:00.006-04:00

Dying to do Letterman is a new documentary film about standup comedian, Steve Mazan, whose dream it always has been to make an appearance on David Letterman's Late Night Show. After learning that he had been diagnosed with cancer and has only five years to live, Steve dedicates everything to fulfilling his long-held dream.

This is a very small independent film and is seeking funds for wider distribution. Presently, it has been shown at a number of small film festivals. Check out the film's website to learn more about Steve Mazan and how you might be able to help.

And for those in the NYC area, this documentary will be shown at the IFC Center from August 26th to September 1st as part of DocuWeeks.

doorway to healing

2011-07-18T12:55:00.002-04:00

Thinking about the wonderful ways in which photography but art more generally have enriched my life, Doorway to Healing in CURE's summer issue is an inspiring, reaffirming read.

gvhd update

2011-07-17T13:25:00.019-04:00

On Thursday, I had my monthly appointment with my medical team. The GvHD remains stable with signs of improvement, but I also continue to experience painful symptoms of its treatment.

I gained quite a bit of weight since June. I'm up 8 lbs. I was 127 lbs at the previous appointment on June 16th and on Thursday, I weighed in at 138 lbs. While 138 lbs is still a little below my pre-GvHD flare-up weight, I am puffy, overweight. I look bloated which admittedly has affected my self-asteem. I own an older, wider pair of jeans that has become my go-to during this period. The weight gain is due to overeating (lots of snacking) and swelling both caused by the Budesonide, a steroid. The two topical ointments, Fluocinonide and Aclovate, are also steroids and so, are contributing factors too. Normally, I would not be eating as much as I have been and especially, making the nutritional choices that I've made. With the summer heat, ice cream has been a very common choice. I've even had McDonald's twice craving for their salty fries and golden McNuggets. For me, eating McDonald's is when all other options have been exhausted. They told me that the insatiable appetite in addition to the other symptoms of swelling, fatigue, irritability, knee pain, and lack of sleep are classic symptoms of these drugs. I should point out that besides going on shoots or taking care of errands around town, I haven't been exercising. He said I could use our stationary bike at home, but to be gentle.

Knee and shin pain in particular have been really difficult during the past several days and it has been most acute during the early morning. With regard to my knees, I've felt like a old man unable to bear his own body weight at moments.

They decided to reduce the steroids' dosages. Budesonide has been reduced to 3mg twice daily until July 27th and then, beginning on July 28th I will take only one daily. With regard to the two topical ointments, I only need to apply it once as opposed to twice like before. While tapering the Budesonide, I was told, the puffiness in my face as well as the knee pain should begin to subside. If the knee pain persists I may need to see an orthopedic specialist.

All the other meds remain the same. We asked about if there is any need for a follow-up colonoscopy-endoscopy, but there isn't, he said. The fact that the pain is gone, I can eat, and the symptoms have improved suggest the inflammation and ulcerations are gone.

In terms of reviewing how Chronic GvHD can affect the body in so many different ways, the nbmtLINK's Survivorship Guide for Bone Marrow/Stem Cell Transplant: Coping with Late Effects has proven to be a very useful resource.

I see my medical team next time on August 11th.

Touch and go is the mantra when it comes to managing GvHD.