The Journal of a Prizefighter

my new photography portfolio

2013-02-19T23:30:00.000-05:00

Since last summer, I've been exerting a lot of mental muscle and time on a new website for my photography. This online portfolio will serve as the primary space where I will be able to share my images with the world. After such a tedious and at times, tiresome process, I'm happy to share it with you: www.duanebaileycastro.com

You might recall that I once had a portfolio website, but I allowed it to expire after it became apparent that its layout and design were too rigid and difficult for long term use and expansion. After months of searching the Web for a suitable replacement, I finally found a company whose templates I enjoyed. I, then, made the plunge.

In addition to my new website, I also have a companion blog where I will share my thoughts and observations about my photographic development, work, and travel. Thus, I have two separate platforms: one dedicated to my cancer journey and the other to my photography.

As it relates to my cancer blog, before today I hadn't made a post since August. Nevertheless, everything in my cancer world is stable and fine. My GvHD remains the same. Work is progressing well. Just very busy. Grad school has also been good. Thankfully, there is no new news to report.

Hoping everyone is well.

hyper-pigmentation skin update

2012-08-31T13:42:00.000-04:00

Yesterday morning I had a follow-up appointment with my dermatologist at MSKCC. Since applying Tretinoin cream to my chest and back about four weeks ago, my parents and I have noticed a significant improvement in the clarity and consistency of my skin. One consequence of the GVHD outbreak was that my back and chest and my face, thankfully to much lesser degree, became freckled with hyper-pigmented spots. There has indeed been progress, but until recently it had been incredibly slow. Thanks to Tretinoin it seems, both my back and chest have improved much more rapidly.

Before yesterday, I had been applying Aclovate (Alclometasone Dipropionate) cream to my face. At the appointment, however, my dermatologist told me to stop using Aclovate and instead, apply Tretinoin cream to my face too once daily at night.

I see him again in early January. We'll see it there's any further improvement.

Finally, after this appointment, I stopped by my oncologist's clinic office to drop off a brief thank you card that I written to my anonymous donor thanking him for what he did for me five years ago. His selflessness and courage, I hope he understands, have not been forgotten whoever he may be.

the stem cell transplant/donor process at mskcc

2012-08-31T13:16:00.003-04:00

On Cancer: Stem Cell Transplant Experts Discuss the Procedure and How to Become a Stem Cell Donor is a brief review of the donor and stem cell transplant process at MSKCC.

five years today

2012-08-21T10:48:00.001-04:00

Today August 21st marks five years cancer-free since my second stem cell transplant. In the transplant world, this is my 5th birthday. Perhaps more significantly, it marks the traditional milestone at which the original cancer's likelihood of returning is believed to be practically non-existent. Some interpret the crossing of this threshold as "being cured."

During the thick of my treatment and in the first few years afterwards, five years post-transplant seemed liked a long time away. But it's here.

This past Friday night, I went karaoking with my sister and a couple of friends. While I'm always reved up for karaoke, I think I was especially so this time in part because of the milestone approaching. While I didn't share this sentiment with anyone that night, singing and dancing in celebration felt liberating.

While I myself didn't really do anything to have reached this five year mark, there is no doubt that I wouldn't have made it without the help of so many others, in particular my medical staff, donor, family and closest friends. I know that this is as much a victory for them as it is for me.

the revival of NYC's waterfront

2012-07-21T10:51:00.001-04:00

This week both the BBC and the NYT had interesting stories about the slow revival of NYC's waterfront. The focus of the BBC's report is the East River whereas the NYT report looks at the Bronx River. While the Harlem River wasn't addressed, efforts at its continued restoration fit within this wider context of rehabilitating all the waters around NYC.

hyphenated couples (and their kids)

2012-07-21T10:23:00.000-04:00

A friend passed along the following recent NPR story - "When Hyphen Boy Meets Hyphen Girl, Names Pile Up" - about the potentially vexing question of what happens when two hyphenated individuals marry and/or have children. In reading the comments, it seems the Spanish-tradition of surnames is most practical. Naming one's child shouldn't be this hard. Should it?

coming on 5 years

2012-07-17T20:02:00.001-04:00

Next month will mark five years since my second and last transplant and this September will begin my fourth year teaching. Incredible. (Not to mention this past May was my ten-year college reunion!)

I had my annual PET scan, which showed no evidence of disease, about two weeks ago. With regard to Hodgkin's Lymphoma, my doctor doesn't think that it will return. He has mentioned this to me at least once before. I agree. I am not overly concerned about it returning although I must admit that I do - though rarely - think about the risk of a secondary cancer and/or toxicity to my vital organs like the liver. I continue to take a daily cocktail of meds of which the immunosuppressive, Tacrolimus, remains the most important. He told me that for now my dosages will remain the same. Meddling in the tricky art of tapering isn't on his agenda right now. I have suffered twice from previous attempts to lower my Tacro level. There is no active GvHD. All is quiet. Let sleeping dogs lie.

And I return to teaching middle school social studies and current events after Labor Day. Three years have passed since this journey began. Three years feeling liberated from the bubble of post-recovery. This summer I'm taking one course towards my master's program. I had planned to take two, but I think it's working out better this way. One is enough.

Aside from this one course, I have a small number of projects that I'm working on. First, I'm working on a new website portfolio to display my photographic work. It's my hope to have it up by the end of the summer. At the same time, I continue to go on shoots around the city. The Harlem River and its bridges continues to draw me to its shores. Thirdly, I have a bit of preparatory work I need to do with regard to the upcoming school year. And finally, I'm trying to get back in shape and give my body and mind the kind of rest that - at times - I haven't been very good at offering.

I want to thank all of you for your continued interest and support during this remarkable voyage. While I don't blog as often as I used to I'm still here pushing forward grateful for all your love.

Wishing you all a fruitful summer!

skin care guide

2012-07-17T17:55:00.001-04:00

It is wonderful to be on summer vacation, but continual concern about limiting the health risks posed by sun exposure isn't the most exciting thing to do. After suffering from a serious GvHD flare-up last year, I've had to be even more careful about my activities outside.

I saw my MSKCC dermatologist, Dr. Lacoutoure, for a check-up last week. I thanked him for his recommendations - Nail Lacquer, Biotin 2500, and BioSil - at our previous appointment, which improved the strength and appearance of my nails incredibly. We had an open and productive conversation about my skin care with respect to the summer and post-GvHD.

It so happens that he also has a recently published book that is available: Dr. Lacoutoure's Skin Care Guide for People Living with Cancer. It promises to be a rich and useful resource for survivors of various cancers looking for information about how best to take care of their skin and nails.

the avengers and the expendables 2

2012-05-28T14:25:00.001-04:00

On Friday after work, I watched The Avengers for the first time.

I was blown away! I watched it in 3D IMAX, which I recommend highly for anyone who has not yet seen it. It's well worth the extra cost. I enjoyed the film so much I'm thinking of seeing it again.

Finally, before The Avengers began, I was so surprised by the trailer for The Expendables 2. Stallone, Schwarzenegger, Norris, Willis, Van Damme, and Lundgren all in one film! And then, there's Li and Statham! As a child of the 80s, action flicks starring Norris and the gang were a part of growing up. If only Carl Weathers and the late Charles Bronson were in it. Imagine all of them in their prime in one movie! The plot would be awful, but the countless explosions would certainly keep it entertaining.

about last night's show

2012-05-22T21:24:00.002-04:00

Yesterday evening's Patient Art Show went wonderfully. It was amazing to have the support of family and friends and also to meet other artists and visitors. My Yankees/baseball theme worked out incredibly well as all three photographs were sold. Honestly, I was surprised that all were taken that first night. It was a pleasure talking to the buyers too all of whom were very warm and excited about the images.

Thanks to the staff and friends of the art show, who really make this special opportunity possible!

high bridge article and patient art show

2012-05-20T11:05:00.001-04:00

On Friday, there was a terrific NYT article about the planned restoration of the High Bridge, New York City's oldest existing bridge and a common subject of my photographic work. I expect there will be more publicity about this project as it moves forward.

On a different note, tomorrow I'll be at Sloan-Kettering's opening night of its annual Patient Art Show exhibiting three photographs. This year I decided to forgo the bridge theme for the Yankees. I'm still pursuing my Harlem River Valley project, but I think there will be a greater desire for images about the Yankees and baseball. I'll let everyone know how it goes.

upcoming medical debt webinar

2012-05-13T20:04:00.001-04:00

On May 24th at 3pm EST, The SAMFund for Young Adult Survivors of Cancer will partner with Jeff Newbauer, a health care consultant with more than 28 years senior management experience, to host a free webinar titled Moving Forward with your Financial Health: Tips and Strategies for Reducing Medical Debt.

In its description of the webinar, SAMFund says: Dealing with medical debt can be overwhelming. Complicated insurance programs and opaque physician/hospital billing practices serve only to exacerbate an already difficult situation for young adults. Sixty-two percent of household bankruptcies are due to overwhelming medical debt and of the most financially devastating diseases, cancer reigns supreme. In this Webinar, we will show you strategies to help manage your health care bills. Specifically, we will show you how to:

1. Effectively communicate with medical billers
2. Access provider-based financial assistance
3. Demonstrate financial hardship; and
4. Negotiate fair settlements and payment plans with health care providers.

Click here to learn more and/or register.

finding donors for africans and people of african descent

2012-05-12T10:39:00.003-04:00

Finding a Match and a Mission: Helping Blacks Survive Cancer was published in yesterday's NYT and is about Seun Adebiyi's efforts to bring increased awareness to the need of African and African-American cancer survivors for donors. A survivor himself, he has led an important mission to make the process of finding life-saving donors easier for people of African descent around the world.

FD intro coming soon!

2012-04-29T14:13:00.000-04:00

First Descents, which offers young adult cancer survivors (ages 18–39) a free outdoor adventure experience, has launched a new program FD intro (FDi) which is a shorter, more accessible adventure experience for young adults with cancer. FDi's two-day programs are designed to make the FD experience available to young adult survivors who might not be able to do a full week program due to health reasons, treatment schedules, family and job commitments, or just general hesitation.

FDi is free of cost to participants.

The next FDi program is June 2-3, 2012. Contact First Descents for more information.

the dark days are over

2012-04-14T18:51:00.000-04:00

Friend and fellow Hodgkin's transplant survivor, Tom de Bruin, produced and published a brief biographical video called The Dark Days Are Over about his cancer experience. Although we've never met in person, we have been communicating and developing a friendship in the process since learning about each other via our cancer blogs online. In fact, we both were diagnosed around the same. He at age 21 and I at age 23. We both underwent a number of relapses and had transplants in 2007.

Thankfully, four and a half years later, he is Hodgkin's free and the proud father of a wonderful, young boy.

I hope you find this beautifully film as inspiring and poignant as I did.

Bone Marrow and Stem Cell Transplant 2012 edition

2012-04-14T18:26:00.000-04:00

The Bone Marrow Transplant Information Network (BMT InfoNet) has published an updated 2012 edition to its very helpful resource, Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients by Susan K. Stewart.

Learn more and/or purchase a copy here.

sobro in the know, know

2012-03-26T21:21:00.000-04:00

A very enjoyable read about my neck of the woods in today's NYT. While there is still a long way to go, there have been positive trends in the South Bronx. Let's hope things continue in this positive direction.

3-month health update

2012-03-24T18:13:00.003-04:00

Back on Thursday, I had my three-month follow-up appointment with my oncologist at Sloan. Everything remains good and steady. He decided to not change any of my medications. He also examined my skin. While it has improved greatly from last year's GVHD flareup, there is still a long way to go. My chest and face have experienced the most improvement whereas my back continues to lag behind. I got the impression from him that my skin might never return to the way it was before last spring. Even before Thursday's appointment, I had been thinking that this just might the new reality about which I'm OK.

I was led to believe that I wouldn't have an annual PET scan this year, but I will indeed have one. While he said he doesn't believe the lymphoma will return, it's still important at this stage - this August will mark five years since my transplant - to have the scan. The scan is scheduled for the end of June.

Finally, I discussed with him the results of my appointment with the physical therapist at Sloan's 53rd Street location on Wednesday. My feet's arches and joints continue to suffer from stiffness. While it's not painful and I have become used to it, I've been seeking relief. The therapist recommended a number of stretches to help alleviate the stiffness. We scheduled a follow-up in one month. If my feet improve, however, she said cancel it and only come in if there's a problem. She also advised me to buy a new pair of orthotics, which I will do next week.

The Biosil (2 tabs daily), Biotin 2500 (1 tab daily), and Ciclopirox Topical Solution (Nail Lacquer once daily), which was prescribed to me by my dermatologist back in December, have strengthened my nails considerably although they still aren't healthy. Some did not grow back proportionally and lines run down some of them. It is also probable that I have a fungal infection in some of them, which is believed to be due to the immune-suppression following the GVHD. Lamisil is very affective, I was told, in getting rid of nail fungi but it doesn't interact well with Tacrolimus and would put more pressure on a liver that already has quite enough to manage. Consequently, the nail fungi will remain until I'm off Tacrolimus.

Otherwise, everything else is moving along well. These days my life has revolved around work, school, and photography. The school where I teach has spring break right now, so I'm off. We go back on April 2nd. I've been out photographing whenever possible, catching up with friends, and taking in a few of the city's enjoyments. Also, I'm trying to back in shape which has been a challenge since the GVHD flareup.

On Friday I went to the Met to check out it's new and fascinating exhibition, Byzantium and Islam: Age of Transition. I was eager to see it for two reasons: one, I studied this in college and graduate school and it formed the basis of the my M.A. thesis and secondly, I'll be teaching Islamic history when we recommence in April. We also have a field trip scheduled to explore the new Islamic wing of the Met, so it was helpful to do a bit of research in advance. And earlier in the week, I saw the film, Chronicle, about three teenage boys who gain superpowers but all goes wrong when one of them goes rouge. Not bad, I thought.

SAMFund list of recipients

2012-03-24T17:30:00.000-04:00

I think I blogged about this, but I may have forgotten. I was very fortunate and thankful to be the recipient of a SAMFund grant at the end of last year. The SAMFund is a wonderful organization, which is devoted to giving financial awards to young adult cancer survivors to help in a variety of matters: medical expenses, transportation, college tuition, book supplies, loan debt, and more. A while ago, a list of its 2011 recipients were posted. Click here to check out the post about yours truly.

Please pass the word to others of interest about this remarkable organization.

late feb update

2012-02-26T12:46:00.000-05:00

Sorry, I've been away from awhile. All is well. Just been immersed in my graduate studies, work, and photography. With regard to my health, I have my next check-up with my oncologist in late March during my spring break. The one surprise about the appointment is that I will not have my annual PET scan that month. Why? I'm not sure as it was his secretary who told me this. When I see him, I'll find out. Regardless, that can only be good news.

A few weeks back, a dear friend passed along this Wall Street Journal to me: Bone-Headed on Bone Marrow. Definitely worth reading!

Until next time, wishing everyone continued health and happiness.

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.