Sunday, June 05, 2011

the unabridged gvhd story

After suffering from what turned out to be a severe flare up of GvHD, I am being to feel increasingly better. I have some ways to go before I'll be feeling like I was before all this occurred describing it as the most difficult period since my transplant. Things, however, are heading in the right direction.

Striking the central region of my abdomen, the first pains began during the third weekend of April between the 17th - 19th. I remember this well because that weekend was my mother's birthday and as a result of the pain, I was unable to celebrate at brunch with her and my family. The pain would go and come without warning. It continued with this oscillating pattern increasing in sharpness. After watching me collapse on the floor in agony upon returning home from work on the evening of the 21st, my mother and I traveled to Sloan-Kettering's Urgent Care (emergency room) where I was examined. Urine and blood work analysis was done in addition to a CT scan. My labs proved normal. Nothing remarkable. As to the CT scan, there was no evidence of cancer as I knew because I had received my annual scan just a month earlier. The scan did suggest, however, that the bowels might have been backed up and so the suggested treatment was made based upon this. Drink plenty of fluids, stay active, and eat a lot of foods rich in fiber.

Now, I was in an awful amount of pain and while the ER staff's conclusion seemed empirical based upon the interpretation of the scan, inside I didn't buy it. All this pain . . . agony that I've been experiencing is due to constipation? Come on! I seriously doubt it. Something else is going on I insisted, but they kept to the story. Drink plenty of fluids, stay active, and eat lots of fiber.

Again, believing that there was some other cause, I did mention to the ER staff of a similar episode back in late January when I suffered from sharp abdominal pain. Back then, it too came out of nowhere. At that time, I went to neighboring NY-Presbyterian Hospital's emergency room where a CT scan along with the usual labs were performed. The diagnosis of the ER staff then was bacterial colitis for which I was given Flagyl and Cipro. After a couple of days, I began to recover and soon was back to normal. So I wondered: is it colitis again?

If it was colitis, the ER doctor in agreement with my doctor whom he contacted, decided not to give me Flagyl, Cipro, or any medication out of concern for staph resistance. For pain, I was permitted to take Tylenol or oxycodone.

Two days nights later on April 23rd, I returned to Sloan's Urgent Care room with my mother worried that this "constipation" had not improved. It was a very brief visit because nothing could be done, they said. Believing that it was constipation, I was told to follow the same instructions. A new scan could not ordered since I had received one just the other day.

In conversations with my nurses over the phone, Milk of Magnesia was recommended in addition to the other instructions. So, we went out and got that. It is important that I point out that during this period I wasn't making any bowel movements, which helps to explain why along with the scan's results, constipation was considered the cause. As the ER staff said, I didn't have a fever, chills, or night sweats which might suggest an infection. Nevertheless, the sharp, piercing pain meanwhile was debilitating continuing both during the day and at night. It would come and go still limited the central region of my abdomen. It was so difficult. The oxycodone, which I had saved from my transplant days though expired, offered welcomed relief especially at night. One negative effect of the oxycodone is that it can worsen constipation.

After repeated discussions and visits with my medical staff, I was referred to one's of Sloan's gastroenterologists, Dr. A. Markowitz. I saw him on April 29th. Based upon my history and symptoms, he said the abdominal pain could be caused by a number of different things, such as colitis, GvHD or Crohn's Disease. It was impossible for him to know, however, without testing. A stool sample as well as a colonoscopy-upper endoscopy were ordered. The stool sample returned negative. While the stool sample was fairly easy to take care of, the colonoscopy-upper endoscopy wasn't scheduled originally until July! After repeated calls and help from Dr. C-M's office, I was put on the waiting list. Thankfully, someone canceled and I was bumped up to the early morning of May 17th.

During this time, I continued to work full-time leaving early a few times to make medical appointments at the hospital. It was extremely difficult, the most challenging since my transplant. I was in extraordinary pain crouching at times. At home, I'd sometimes lie on the floor in fetal position overwhelmed by the stabbing pain. I vomited several times too. Moreover, I become cranky and disinterested in work but was trying to put up the best front possible. My colleagues and supervisor were wonderful during all of this.

During the week of May 9th, the situation hit crisis mass. Increasingly during this period, my appetite had begun to wane. I was one of several teachers assigned to chaperone the 7th and 8th grade trip to Boston from Wednesday, the 11th to Friday, the 13th. While I wasn't feeling well, I thought I could manage. Moreover, when I began to have second thoughts I thought it was too late. They'd need to find a substitute on late notice and I wasn't comfortable with it, so I stuck with it and went on the trip as planned.

I hung in there participating in all the activities but one: a scavenger hunt on Boston Common. But it was a real slog. I vomited a few times in my hotel room and ate almost no food during the entire trip as I just couldn't. It was too difficult to eat and I had no appetite. And although the temperature was quite pleasant, I felt very cold I assume because I wasn't eating.

It was during this trip to Boston that I also began to see a new manifestation: skin rashes. At first, I noticed them on my penis and then, while I couldn't see them I could feel dozens and dozens of bumps across my back. The rash on my penis resembled the GvHD hyper-pigmentation that occurred a few years ago during my first but much milder flare-up. It was at this moment that I first began to think of GvHD as the cause.

A few days after returning home, my parents examined my back and the rashes were afire across my back and soon thereafter, my chest, abdomen, and some irregular spots on my arms. These dark, hyper-pigmented blotches also soon spread to my forehead and face. Below my eyes, there are dark patches resembling the black make-up adorned by some football players.

The opening night of the hospital's annual patient art show was the evening of May 16th, but it was my prep day before my very first colonoscopy-endoscopy. Consequently, I was unable to attend but three dear, close friends rallied to man my booth. Six were up for sale. I know that I sold two, but haven't had the chance to see if any more were bought.

After the colonoscopy-endoscopy were performed, Dr. Markowitz informed me that inflammation and ulceration had been found in the stomach and small intestine but as to its origin, we would have to wait for the pathology report. No more than two hours later, I saw my nurse practitioner and Dr. C-M upstairs in their clinic. First, I was weighed showing a lost of 11 lbs. I was 130 lbs (though last week it dropped to 128.5 lbs). They then showed me photographs taken during the procedure and pointed out the reddish areas of inflammation. They went on to examine my skin to which Dr. C-M was shocked by the scope and intensity of the rashes on my chest and back. He described it as "impressive" or "remarkable," I recall. Photographs were taken for records. All clues, he said, point to GvHD but the pathology report would confirm.

They also insisted that I see Dr. Lacouture, a hospital dermatologist, to examine my bodily rashes the very next day. So, I did. I left work early only to miss my appointment due to my cab driver's poor route choice in midtown traffic but thankfully, was squeezed in for his final slot later that afternoon. I blew a lot of cash on cabs that day! He took a biopsy of one of the rashes for examination. Between the colonoscopy and this, he said the origin of the inflammation and rashes should become clear.

And indeed, both pathology reports confirmed what my hunch had been ever since that terrifying trip to Boston: GvHD. In fact, the colonscopy's pathology report stated "The overall findings are suggestive of severe graft-versus host disease (affecting stomach more severely than other sites)." It's noteworthy to point out that the nurse practitioner said that "severe" is rarely used to describe GvHD in the reports.

Like during my earlier flare-up with GvHD, the drug Tacrolimus would remain the central player as it has ever since 2007. Immediately, they bumped this up to 1.5 mg 2 x daily from 0.8mg. In addition, I was put back on Voriconazole (200mg 2x daily) to prevent pneumonia and Prilosec, which is akin to Prevacid, 20mg 2x daily. I also received three ointment prescriptions for the rashes. First, I was given Protopic before it was replaced with both Fluocinonide (2x daily) for the body and Aclovate (2x daily) for the face. After the inevitable tweaking, the Tacrolimus dosage has been reduced to 1mg (2x daily). To aid this immunosuppressive, I was prescribed two others: MMF aka CellCept (1000mg 3x daily) and Budesonide (6mg in AM, 3mg in PM). All three immunosuppresives combine to weaken the strength of my immune system, which is in part why the Voriconazole is needed because I'm at much greater risk for pulmonary infections. In light of these newest additions, I continue to take the regulars: Penicillin VK, Acyclovir, Folic Acid, Magnesium Soy Protein, and Multivitamin. So, in total I am taking 12 different medications at the moment.

During the past two weeks, I have had to get labs drawn at Sloan in the morning before work, so that my Tacrolimus level could be measured and adjusted if necessary. Thankfully, my uncle has been able to give me a lift many times to the hospital before bringing me to work. His generosity has been a huge help. This Thursday morning at 8am, I'll return to the hospital for both a blood draw and medical appointment with my nurse practitioner, but school will have ended the previous day so I'll be in good shape. Just three more days.

Alright, we all know that GvHD was the cause but why? How did this happen? Apparently, it goes like this. Back in late March in the ongoing balancing act to wean me slowly off Tacrolimus, the dosage was reduced to 0.5mg once daily. It seems that this drop in my dosage was too much too soon. Essentially, Tacrolimus is like a blind-fold over the eyes' of my donor's white cells, whose job it is to destroy any foreign entities. They believe they are still in the body of my donor. When my dosage was dropped too low, those blind-folds were essentially removed and the now conscious cells (kinda like in Terminator 3: Rise of the Machines when the robots woke from their slumber) alarmed by this strange, alien world went on attack. They sure went ape-shit! I can't really blame them because they're doing their job. Remember, it's the graft caused by the donor cells which is the aim of an allogeneic stem cell transplant because it destroys cancerous cells and the fact that I've been cancer-free for almost four years shows it has worked. However, when this graft is out of balance it can become dangerous. Now, Dr. C-M did warn me at my appointment on March 24th to be on the look out for any changes to my skin, notably hyper-pigmentation. My skin was just fine, however. Everything appeared to be going smoothly . . . until mid-April. It was the abdominal pain that was the first symptom, which I nor my medical team, understood fully until the damage had already begun. Now, it's possible that if the colonscopy had been conducted earlier that the extent of the damage caused by the GvHD might have been stopped but as I didn't have the typical symptoms of infection (fever, chills, etc), constipation remained the most probable cause as the scan seemed to suggest to the medical team even though I had a hunch something else was going on.

During these roughly two months, I've been forced to drop almost everything in my life but work: socializing with friends, parties (notably the birthdays of my sister and a very close friend of mine in Atlanta), seeing Sir Derek Jacobi star as Shakespeare's King Lear at the Brooklyn Academy of Music, preparation for graduate school, French class, and photography. I went to work and returned home every day and then on the weekends, stayed in sleeping or watched TV if I was up to it.

About 5-7 days ago, I began to eat more regularly although portions are small. The abdominal pain, which brought me literally to my knees, has gone away although some times my stomach still feels upset or unsettled. While my bowels are much improved, they still aren't normal. Staying well-hydrated remains a challenge. My energy is improving although I suffer from an incredible lack of stamina. I get tired very easily. Dr. C-M and the medical team seem optimistic. They said I will recover but it will take some time. Maybe 2 months? I'm not sure. The weight will return but slowly, they told me, and the rashes will go away. Right now, it's day by day but I'm hopeful looking forward to a summer at home full of photography, reading, writing, going to the movies, resting, seeing friends, and working to get stronger.

Thank you, everyone, for your generous comments during this challenging period. It amazes me at how many people still are interested in my story after these many years. Your warm, heartfelt words gave me strength and levity and also, brought a smile.

I didn't have time to proofread well, so forgive me for any typos.

2 Comments:

Comment Blogger Tom (dB) said...

Duane, you've been through so much; and the fear that arises at these times is something the medications can't help with. So many thoughts and questions. You did very well to keep it all together, you're an immensely strong person, and you should be very proud.

It's odd, we've never met but I think of you a lot and pray for you, and I always feel very upset when I read you've been going through such difficult times. Best of luck Duane.

8:19 PM  
Comment Blogger Duane said...

Thank you for your kindness, Tim. You're a wonderful friend. Congratulations of the wonderful baby news and wishing you continued good health!

9:14 PM  

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