Monday, April 07, 2008

day +230

As I type this, my shoulders are a bit sore after the vaccinations that I received this morning.

Yep, I was at Sloan for a check-up this morning. My dad accompanied me to the appointment. My blood counts continue to be stellar. (Thank you donor.) The blood test, however, came back positive again for EBV. Despite this, Dr. Castro-Malaspina isn't concerned. He told me that normally a relatively strong immune system will take care of EBV by itself, but the fact that the EBV seems to pop up from time to time suggests that my new T-cells aren't familiar with EBV and therefore, is a sign that they haven't matured fully.

My shoulders ache slightly as a result of the vaccinations that I received at my appointment today. The reimmunization process has begun and so, I received the following five vaccinations: polio, hepatitis B, haemophilus influenzae Type b (Hib), Tetanus-Diptheria (Tdap), and pneumococcal polysaccharide (PPV). I'll of course need to receive further doses of these in order to complete the vaccinations' series. Not knowing anything about reimmunization since this is the first time that I've done this, I was surprised to learn that I won't receive some of the childhood vaccinations, such as the one for measles, mumps, and rubella. In addition, I was told that I will be able to receive the flu vaccine in the future though I wasn't able to get it this past winter, since I had just underwent an allo transplant. At, you can learn more about child and adult vaccination.

With regards to the chickenpox, I'll be exposed. Alli told me that I won't get Varicella, which is the vaccine against chickenpox. It's the same vaccine given to prevent shingles, which I'll also be at risk for. She told me that about 20-30% of transplant patients are at risk for developing shingles.

In addition to the IVIG treatments, the aerosolized pentamidine has been discontinued which is another reflection of my new immune system's growing strength. Interestingly, however, Dr. C-M told me that I'm still at risk for developing chronic GVHD. I'm way past the acute phase of this disease, but it is indeed possible that as he continues to taper down my Tacrolimus dosage, which for the moment still stands at 1.25mL, chronic GVHD could raise its ugly head. Consequently, it's important he said that the tapering be slow and methodical but he does think that by my one year mark in late August I should be off the Tacrolimus completely.

For the foreseeable future, I'll continue to take all the other medications like Prevacid, Acyclovir, and Voriconazole. Though the Acyclovir protects me from shingles right now, there will be a time when I won't need to take it any longer and it is then, that I'll be at a greater risk for developing shingles.

Prior to the transplantation, I took calcium supplements daily and so, wondering about the health of my bones I also asked Dr. C-M about this as well. Because I've never been on prednisone, he isn't worried about my bones' density but thought it was a fine thing to do. So, I plan to start taking the calcium supplements once again. Thinking about the impact of the transplant on the health of my heart and lungs too, I asked if there was a need for any kind of cardiac or pulmonary function test but was told that unless there's a symptom that warrants concern it isn't done generally. Indeed, I haven't had any breathing problems and I'm able to go at least 40-45 minutes on my stationary bike without any difficulty, so I feel comfortable with not having a test done.

Understanding the real possibility that he'd likely admonish the idea of that dream trip of mine so soon after transplantation (just as my parents and others did), I went ahead and asked him about it anyway though hesitantly. I explained to him that in addition to Montana, I'd like to also travel to the Pacific Northwest, California, to New Zealand via freighter and then, fly to the paradisal-looking Cook Islands before returning home. Like before, he gave me the go for traveling to Montana this summer, but New Zealand is way too far for now. With the risk of developing GVHD this summer as the Tacrolimus continues to be tapered down, traveling so far away could present problems, he responded. Fair point. The GVHD risk is, of course, just one of a number of potential health concerns that could rise even while traveling domestically let alone abroad. Dr. C-M told me to limit it to the US. As a result, I've resigned myself to this idea though honestly, I'm a bit bummed out that this trip of mine which I've been dreaming about in one form or another for about five years won't be fulfilled in its entirety. Yes, it looks like I'll be able to make it out to Glacier finally but I really was hoping that I'd be taking that freighter across the great Pacific Ocean as well. Yet in my heart, I realize that there are indeed some serious risks with a trip abroad so, so far away at this early stage in my recovery. I'll get over it and I really do understand that this abridged version is the most practical, safest choice for now.

I need to spend some time thinking about this trip now, so I can begin to make plans for Montana. Now that Glacier looks like a real possibility, I must admit that in some strange way a part of me is a bit nervous. For years I've been thinking about this possibility and now it's here before me. It feels a bit surreal. This trip of mine has been tucked away in the safe bastion of my thoughts and dreams, but now like a genie it's emerging from the darkness into light and into the realm of reality. Realizing that what up until now has been an impossibility has just turned into a possibility is a remarkable yet overwhelming thing.

Following my appointment, I went up to the Patient Recreation Department where I dropped off the framed photographs that will be in the art show later this month. The director of the program and two other staff members there complemented me on what they saw which made me feel good about my work. Although I had sent out invitations already, I was given about a dozen of their own invitations.

May 12th is my next follow-up appointment at Sloan. On Thursday evening, I plan to attend OMG! A Cancer Conference For Young Adults.


Comment Blogger Kevin said...

A freighter across the Pacific less than a year after transplant? I'm going to have to show your blog to my transplant nurse to prove that there's someone crazier than me out there! ;) You'll get down to Godzone soon enough and I bet you won't be in too much of a hurry to move past Montana.

2:13 AM  
Comment Blogger Mary said...

Hey Duane-

I'm planning on going to that conference on Thursday too! Hopefully I'll see you there!


P.S. It sucks that your trip was cut short, but just because you're not going now, doesn't mean it's cancelled for all time...

5:05 PM  
Comment Anonymous Eric said...

have fun at the conference.

5:22 PM  
Comment Blogger Duane said...

Yeah, Kevin I guess you could say I'm just a bit ambitious but I keep pressing forward. . . .

To Godzone (aka New Zealand) and beyond!!! ;)

6:45 PM  
Comment Blogger Duane said...

I hope to meet up with you at the conference, Mary!!!! :)

7:08 PM  
Comment Blogger Michelle J said...

Good news all around my friend! Hey Montana aint too shabby! Just go for it there and have a blast is what i say..

Also, your still on for May 3rd right? The official invite is up at CSL so check it out! OK?


7:19 PM  
Comment Anonymous Sarah said...

Ack, so many shots at one time! I certainly couldn't handle that many!

I sure hope you don't get shingles... having had them in college, they are VERY painful.

In other news, Scott and I have moved to NC. Scott's got a new job down here.

I'm so glad to read that everything is going so well for you. You're always in my thoughts.


11:43 AM  
Comment Blogger Veronica said...

Just wanted to ask why they don't immunise you against chicken pox and shingles??

3:50 AM  

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