Hello friend and welcome to my journey with a very rare and deadly disease. Like everyone else, I would have never thought that my life would have taken this long, arduous trek through the world of the chronically ill, but yet here I find myself! :)
QUICK BACKSTORY:
I was diagnosed in 2006 @ age 35 with a very rare & aggressive Non-Hodgkin's Lymphoma (NHL) called Cutaneous/Peripheral T-Cell Lymphoma (CTCL/PTCL), quickly to stage 4a. It was considered a "terminal" cancer and I was given 6 months. At that time I was the only income for my pregnant wife and 4 year-old son.
After a few years of experimenting with all kinds of intrusive and painful procedures to attempt to halt the progression of my unique "Nick's cancer", I finally underwent a MUD (unrelated donor) Bone Marrow Transplant (BMT/SCT) in 2008 at Emory University Hospital in Decatur, Georgia. While it was quite successfully initially, I soon developed severe, chronic Graft versus Host Disease (cGvHD), which led to complete liver failure around Christmas time of 2008 and, for a second time, I was told that I going to "pass on" (within a week). However, it appears that I was too stubborn to listen to the medical professionals! (Typical of me).
Having survived that, my body drastically changed in short order whereby I began to randomly lose the melanin in my skin and became depigmented in splotches all over my body, particularly my face and arms. On top of that, the years of radiation treatments, cGvHD skin "flare-ups", and countless other complications all coalesced into insufferable, constant pain everywhere, which led to a Prialt (sea snail venom) pain pump implanted in my spine in 2010.
Unfortunately, the surgeon made mistakes and I leaked CSF (Cerebrospinal Fluid) from the sutures through my shirt for days, and again it appeared that I was being called "back home". I eventually got through 2 weeks in the ICU and have ever since been battling daily pain, wound care, plastic surgery, setbacks, infections, and all that comes with such complex, chronic conditions.
That initial bruise-looking spot on my hamstring in January of 2006 belied the drastic and lifelong changes that myself and my family would have to forever endure. But, as they say, the human spirit does prevail!
When asked how I managed to survive against dastardly odds, I reply that it was my wife and 2 boys that got me through it all. In fact, every day is a gift to see their smiling faces and I thank my lucky stars that I am here to witness their beauty. Life is good.
Many well-wishes and blessings,
Nick August 26, 2016
***************************************************************************************************************************************************************** [My original post from when I first created this Caring Bridge website]:
This website is to inform my friends and loved ones of my progress as well as share and educate other patients, caregivers, medical staff, etc.. What I hope to achieve with this effort is not only to document my story for those that know me or the occasional visitor, but also to do my small part in changing the face of the "C" word. I want to provide you with a positive story of a cancer survivor who became better for it. I not only am "beating" cancer, but I am growing and becoming stronger because of it.
It started in Jan. '06 when Katie noticed a large "bruise" on my right hamstring. Several biopsies at the dermatologist revealed little and at my request, I went to Emory Healthcare to see Dr. Sareeta Parker. After some more biopsies (I lost count) she confirmed a diagnosis of a fairly rare type of Non-Hodgkin's Lymphoma called Cutaneous T-Cell Lymphoma (CTCL). We did 6 weeks of focused skin radiation on those "bruises" and while it burnt me to a crisp, it did kill off the cancer. I was told that although that was taken care of, my particular case was very unique and not like other CTCLs. Quick lesson: The most common type of CTCL is Mycosis Fungoides (MF), which typically affects black men in their 50s and 60s! While a type of cancer, MF is usually very manageable, and indolent (slow growing) and most people live their entire normal lives managing it without too much complication.Lucky me (or not? Jury is still out), mine was not behaving like MF and actually not really behaving like any other types of CTCL. Some joked that I had the "Nick Graham" cancer!
By Jan. '07 lesions and tumors started appearing on my left arm, chest, and both legs. At first, they appeared to be acting like typical MF and we were initially elated that a promising future looked hopeful. Plaques and patches starting appearing all over my legs and right arm, which is typical for MF.More tests followed. We grew more concerned as we realized that this wasn't going to be MF, but a much more aggressive and dangerous form of peripheral CTCL. This was around June '07 or so and I was then working with my primary doctor, Mary Jo Lechowicz..
Within a few months tumors "exploded" all over my arms and legs. Eventually they grew quickly. One was the size of a softball and another a baseball, honest! The rest were raised patches all over my lower body. Not the condition to have for wearing shorts and t-shirts! Luckily it was becoming the Fall of '07 and I started wearing only long sleeves and pants. I haven't worn shorts or short sleeves since.Luck seem to be on my side as one of the most highly regarded CTCL specialists, Madeline Duvic at MD Anderson, happened to come to Emory to give a second opinion. She looked at me and immediately said "Just have a Bone Marrow Transplant (BMT) and you should be fine". Ha! That sentence seemed to be filled with so much gravity that I ended up repeating it to myself many times over.The cancer continued to grow on my body, although fortunately it had never metastasized and seemed to be confined to the skin only. We tried to do different chemos (ONTAK with Targretin and Doxil) but they did nothing. At this point (Oct. '07) I had accepted the inevitable BMT that would save my life. Several donors were found that completely matched my blood. Now I had to prepare my body for the transplant by getting rid of the cancer.
Lymphomas are apparently very susceptible to radiation. Mine was on the skin. Bingo. I have undergone 2 months (3 days a week plus "boost" on the 3 largest tumors) of total skin radiation. Also, I started back on the Targretin (pill for CTCL) to ward off any internal cancer.So, here I am looking at my last week of work and THANKFULLY my last sessions of radiation. For now, the BMT is planned this way: Be admitted to Emory University Hospital April 2, 6 days chemo, 1 day off, do the BMT, and then recover for 3 months or so.
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