Sunday, January 28, 2007

what's been happening

A lot has happened since my last post. I've been very busy. Too busy to post really.

I'm back in Chicago. I arrived here from New York on the 22nd after taking two weeks to get myself together after surgery, but then in just two days I was back in New York on the 24th for a consultation appointment at Memorial Sloan-Kettering the following day. I hopped back on a plane returning to Chicago on Friday, the 26th.

So, here's an update of what's been happening:

On the morning of the 17th, I had a string of appointments. First, I saw Dr. Schuster at about 8:45am. We again talked about the chemo regimen of Gemzar, Navelbine, and Doxil (GND), which he said could be administered at the University of Chicago Hospital. This regimen is well-tolerated and has been proven to be very effective against lymphomas. Consequently, it would allow me to continue my studies as I receive this treatment. After two cycles, he would most likely want me to return to New York for a staging scan to evaluate the effect of the treatment. Then, I'd have at least another cycle or perhaps two. Another staging scan would be done. Granted that a donor match has been found by this time, I then should be prepared for the allogeneic mini-transplant.

He is searching the NMDP registry for possible donor matches, he told us. Denise, my youngest sister, was tested but we learned recently that she wasn't a match. My parents were slow to the idea of having my other sister, Dawn, tested, but they soon agreed and she was tested on the 24th. In about 10-14 days, we should know the results of her HLA test. Dawn, who is 21 years old, was born physically and mentally handicapped and as a result of this, she has needed the constant care of trained medical staff which is why she doesn't live at home with us but instead at a center in Albany specialized for children with similar birth-related ailments. She's been at this center since her birth. Naturally, my father has been wary of the idea of me using her stem cells if we're a match, because of her birth defects. However, Schuster said that it's quite possible that her physical and mental defects are not related to her blood. Thus, her blood may be fine and suitable for transfusion. Of course, Dawn may not be a match and that would end the conversation there, but I have felt that it is worth exploring even though if we prove to be a match and her blood is deemed safe, there are some ethical issues that would need to be addressed. If Dawn isn't a match and the NMDP search comes up dry, then a donor drive (such as what my friend Lindsey did) would be another option of exploration.

My good friend, Jared, shared with me a story which his mother had told him about a relative or family friend who was in a similar predicament as myself. One of his siblings wasn't a match, but his brother, who suffered from Down Syndrome, was a match. His brother's stem cells were used and according to Jared, the patient is doing just fine. As my therapist, Dr. Roberts said, that would be a hell of a story if Dawn was a match and able to save my life. Think of the symbolism. That would be something wonderful indeed.

During my appointment with Dr. Schuster, I also informed him that we were going to Memorial Sloan-Kettering for a second opinion. Around the time of the surgery, Eileen raised the idea of seeing specialists at Sloan for a consultation. Had it not been for her, I probably would not have considered looking somewhere else, but it made all the sense in the world. When I was diagnosed the second time, I sought second opinions. This time is no different. The path that I'm about to undertake is a serious one and the stakes are high. Weill Cornell is a superb hospital and we like Dr. Schuster a lot. He's really good, but with preparations being made for me to battle Hodgkin's for a third time, it's in my best interest to know all that's out there. What are my options? What is best? Perhaps another specialist will have a different approach. Consequently, I contacted the offices of Dr. Craig Moskowitz and Dr. Hugo Castro-Malaspina at Sloan-Kettering.

Following my early morning appointment with Dr. Schuster, I walked over to an adjacent area of Weill Cornell, where I had a follow-up appointment with Dr. Dakin, who examined my abdomen and the incision wounds. He said they were healing very nicely. No problems to report. Curious about the surgery, I asked him how was the process of removing the spleen and he told me that it was a little challenging, but in the end it worked out very well. Just take it easy for the next 4-5 weeks, he told me. Don't do any strenuous activities or lift anything very heavy. He said that although there's no magic time frame in which I'll recuperate fully, 4-5 weeks should be sufficient. I'll be the best judge of my progress, he stated, as I feel better and better as the days and weeks advance. Here's a photo of my abdomen from a week ago:

I feel pretty good. Only three weeks have passed since I my spleen was removed. Not a lot of time really, but I feel so much better. The first 7 days following the surgery were the most painful, but after that period my condition improved remarkably. Indeed, Dr. Dakin did tell me that within 1-2 weeks I would feel a lot better. Now, I can move and get around with no problem. I don't fear laughing anymore which is wonderful. I'm passing gas freely, which is a blessing. Perhaps the only moment when I feel any sort of physical discomfort is when I lay on my chest. Even though the wounds are healing well, the main central incision has hardened, so if pressure is applied there (as what happens why I lay on my chest) I can easily feel the strange discomfort though it's not painful.

After the appointment, I saw Dr. Roberts. I updated him on all that was going on and we talked for a while discussing the issues at hand. For most of our session, we meditated, however. As usual, he offered to have phone sessions with me while I'm in Chicago. This was my last meeting with him before returning to school.

That evening Su and I watched The Last King of Scotland for which Forest Whitaker won best actor at the Golden Globes. In this intensely bloody but engaging film, actor James McAvoy does a fine job playing Dr. Garrigan.

I was fit to return to Chicago for the continuation of my studies, so I flew back on the 20th with Su, who stayed with me a few days in order to help me with my laundry, groceries, and with whatever else I may need help.

An appointment with Dr. Moskowitz at Sloan was made for the morning of Thursday, the 25th. So, I flew back to New York Wednesday evening. Dr. Moskowitz is a lymphoma specialist. We had a good and frank meeting. He was very straight-forward about the nature of my situation. He agreed with Schuster that the allogeneic mini-transplant was the only chance of a cure. He was very direct when he told us that regardless of what others had informed me about the success rate, the real numbers were more sober: about 33%. Moreover, the allogeneic mini-transplant is not a standard treatment, he said. There's nothing standard about it, he went on to say. However, if the transplant fails all is not lost he said. Though he wasn't very specific, he told us there are other treatments available that can keep the cancer in check. In other words, it would become then an issue of stabilizing the cancer. Dr. Decter brought up a similar scenario at our meeting. If I were to get pass the first year post-transplant with no major issues, such as Graft Versus Host Disease or transplant failure, then the evidence suggests that my long-term prognosis would be improved significantly. The first year-post transplant, Moskowitz said, would be a critical period. Perhaps the most valuable thing that I took from our meeting was this: there are only a few centers in the US where one would want to have an allogeneic mini-transplant and Weill Cornell wasn't one of them. He mentioned the M.D. Anderson Cancer Center in Houston, Texas. If I'm in New York, then Weill Cornell isn't the place. It has to be Sloan-Kettering, he told us. He said that Weill Cornell has produced no original research on this kind of treatment. He spoke very highly of Dr. Patrick Stiff of Loyola University Health System, who has experience in transplants, knowing of course that I'm in Chicago. At the University of Chicago Hospital, he recommended Dr. Koen van Besien. Dr. Jane N. Winter at Northwestern was also mentioned.

There was so much that he talked about during our appointment. Some of it I'm sure I forgot or didn't follow. A lot of this and a lot of that. Su joked afterwards that we sure could have used a transcript. After reviewing Dawn's medical records, he expressed his concern about using her as a donor if she proves a match, because it's unclear if her defects are genetic or brain-related in nature. In addition, he mentioned that I may have difficulty finding a suitable donor since I'm African-American for whom there's a shortage of available donors in the NMDP registry. In such a scenario, umbilical cord blood could be an excellent substitute. At the same time, I had wondered if the greater genetic diversity among peoples of African descent about which I learned in Spencer Wells' The Journey of Man might also help to explain why peoples of the African diaspora have a greater difficulty finding suitable donors. Greater genetic diversity in the population means that more donors are needed to meet the number of people, who are in need of a donor match. Read more here.

There's a consensus that an allogeneic mini-transplant seems to be the ultimate aim, but in the meantime a strategy must be chosen to deal with the cancer at hand so as to get me in remission. Moskowitz proposed several different approaches. One approach could be to use radiation coupled with some chemotherapy. This, he said, would work only if the cancerous areas were very small. Or he could give me MOPP, a more intense treatment in which I'd most likely not be able to be in school, because such a treatment would drop my blood counts and put me at risk for infections. As for Dr. Schuster's regimen of GND, he said that's a fine regimen although there are also variations of it. Rather than once every three weeks, he might do it every two weeks for example. So, as you can tell there's a lot in the air at the moment. My most recent PET-CT scan wasn't clear enough, he said. Before he could make a decision, he needed a clearer image of what's exactly going on in my body post-splenectomy, so he set me up for a CT scan that afternoon. He told me to call him on Tuesday for the results of the scan and his recommendation.

The great thing about my meeting with Dr. Moskowitz is that now I'm aware that there are more approaches out there. How should I achieve remission? According to Dr. Schuster, there was one path but after our conversation with Dr. Moskowitz, we learned there are several paths. The CT scan, he said, would give him the information he needs. If the cancer has stabilized since my splenectomy, then treatment in Chicago should be just fine. However, if the scan shows that it has grown then, he told us that he'd recommend that I remain home for treatment, which of course means that I can say bye-bye to the rest of the academic year and graduation.

Before leaving Sloan-Kettering, Su brought me up to the Pediatrics unit where she gave me a tour. She herself had been treated for Ewing's Sarcoma in Pediatrics. I had never seen a cancer ward like this one. It had the feel of a nursery rather than a hospital. Bright natural light from above. Vibrant colors everywhere. A large fish tank. Computers. Toys and more toys. A movie room. Parents interacting with their children and some parents sitting down leisurely watching the busyness around them. Frankly, it's something to witness . . . these very young children being treated for illnesses for which they understand very little about. Looking at the children of the ward made me pause and I was reminded to remember these kids when I wished to wallow in the sadness and despair of my own situation. Neither is fair, but neither is life.

The truth is, of course, that we don't know what our futures hold. I never thought I'd be diagnosed three times beginning at age 23. In our daily lives, we delude ourselves with the thought that we have some absolute, ironclad control over our own destiny, but we don't really. It's a delusion. History tells us this. We're at the mercy of forces that are beyond our control and it's during an illness in which our suffering makes this reality most pronounced. All that we can do is to work, progressing forward, making responsible and compassionate choices in the hope that life will be forgiving to us and to those around us.

The next day, I took a 6am flight back to Chicago, where I arrived at about 7:15 local time. Upon returning back to my place, I took an hour-long nap before preparing for Arabic class at 10:30. Later that morning, I heard back from Dr. Schuster who wants me to contact Dr. Sonali Smith of the University of Chicago Hospital regarding the administration of the GND regimen. Since I have a student medical insurance, I need a referral before I can see a specialist, so I scheduled an appointment at the Student Health Center on Tuesday morning at 8:25am. Once I receive the necessary referral, then I can contact Dr. Smith's office. Even though I'm not sure at the moment if I'm going to follow Dr. Moskowitz or Dr. Schuster's course, I figured that I might as well keep the ball rolling and therefore, make the appointment with Dr. Smith. Just because I see her doesn't mean I will be treated by her or there. Once I speak to Dr. Moskowitz and hear his opinion, I should have a much better and clearer understanding of where I'm headed.


Comment Anonymous Laura Lehmann said...

Hey Duane,

Dr. Moskowitz dismissed me from the hospital when I was going through my transplant. He's a great doctor, I'm glad you're in his care.

Let me know if you need any advice with Sloan etc...

Lots of love,


2:38 PM  
Comment Blogger Duane said...

Thanks Laura. Indeed, I may have to ask you questions at some point.


9:49 PM  
Comment Anonymous Emily said...

I'm with brain itches just reading about your appointments. I'm glad that you are out there getting all the information so you can make the most informed choices.

I remember Su and mom talking about the peds ward and the many children fighting battles that many adults could not fathom...there are no words. Life is so precious, yet taken for granted so often.

I wish you all the best and am so happy that my sister is there, loving you and helping you through.


5:30 PM  

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