Monday, September 21, 2009

Round two to the Gorilla

Well as many of you know (at least those that follow my facebook updates) today was not such a good day… I had an appointment with the Hematologist at 10:30 and by the time I got back to the van I was a slobbering bawling wreck. Some of you are aware that the new Dr. had me weaning off of the Prednisone and Danazol. Clearly they were not working and the long-term effects were not so desirable. Plus, I was tired (as were Sarah and the kids) of dealing with my dramatic mood swings and I was just plain getting super angry at the stupidest little things. Enough was enough. She had spoken to me about trying another drug and I suppose that I pinned my hopes on it as my miracle cure. Well, it ain’t happenin’. What this drug was going to do was replace a chemical that my body (and yours) naturally makes when it needs more red blood cells. After the test to determine what the level of this chemical was in MY body, it was discovered that I am ALREADY producing more than normal. Ergo, the medicine would not really do me any good.

So where does that leave me? With only one more drug to try, Thalidomide. This is a drug that was developed back in the 50’s (I think) as a sedative for pregnant women. Worked great except for one small side effect, all the women gave birth to babies that had severe birth defects… It was mothballed as you might well imagine, but it stayed on the shelf for possible other uses. They have made changes to its chemical make-up over the years and in fact, the clinical trial I was in at the Mayo Clinic was for the latest generation of this drug. While in the trial I was only getting transfusions about once a month as opposed to bi-weekly transfusions. It has been some time since I discussed this drug with any doctors but as I recall the potential side effects for me could be irreparable nerve damage, birth defects (yeah, it’s so nasty that if Sarah were to get preggers, the baby would have severe birth defects), so even though she is “fixed” I would have to take precautions to help insure that didn’t happen. I can tell you that NO guy like to think about these things, especially in the heat of the moment… As I am not yet even done weaning off the previous meds, none of this has really been discussed in detail with the new Dr.’s but I’ll address that when the time comes.

There is one other option which all of the new doctors have discussed and even gotten the ball rolling on already… the Transplant. In the new scenario a caregiver and I would go to Seattle and spend a week getting prepped by getting Chemo (for me, not the caregiver!) and then get the transplant. Afterwards I would need to stay there for a MINIMUM of 30 days. With all that I would be going through I don’t think that I would want the kids to have to see that… That means finding someone to take care of them for the duration, not to mention being apart from tem for that long… Then there is the very real possibility that the transplant won’t take or even worse, the possibility of Graft Vs. Host disease. In this case, the new bone marrow’s white blood cells would reject my body (the host) and attempt to eradicate me much like the common cold when you get sick. The odds of success are not all that good and frankly, I don’t want to go into details right now. I hope you understand…

To all of you who posted such kind and encouraging words on my facebook page today, I cannot begin to tell you how much that helped me get through the day… I could have easily given up and I will not EVEN begin to tell you how the thought process works regarding THAT. For those that called, I apologize if I wasn’t all that talkative, I was always taught that if you can’t say something nice, say nothing. Well, there was nothing nice to say. And to Frank, thanks for stopping by. It’s very comforting to know that help is only a phone call away. I understand all that you are going through already and I hate to add to that burden but as you all can see, there seems little that I can do otherwise.

Somehow thank you seems so feebly inadequate to all of you, but it is all I have at the moment. Please respect that this will take some time to process and I will likely not feel like “talking” about it. Please feel free to post comments on my facebook or on the Blog, as I will be trying to keep up on those. If you don’t hear from me, don’t worry… that doesn’t help you OR me. You can call Sarah if you need to get in touch with us but my phone will probably go straight to voice mail. I simply have enough to deal with right now…

Know also that I love you each and every one and I am simply AMAZED by the love and support that I have gotten already, even from people that have never met me or don’t even know who I am. You are ALL truly amazing people and I considered myself blessed to have you in my corner. That Gorilla packs a mean wallop! By the way, I could use a couple cases of bananas; I think he’s recruiting chimps…

DING DING DING!!! Round three!


  1. My Dear Tracy.
    You have such a way with words. Thank you for the facts. Facts are good for me.

    Please know you are in my thoughts and prayers. In fact, almost continually.

    Whie it has not happened yet, I do want to say somthing about the transplant process. While it is a scary thing for your kids, and trust me, I SO totally understand that, every day that you are apart from them is a day lost. If the worst were to happen, THEY lose time with their father. And let me tell you from personal expierence, that I would love to have one more day with my dad. You can take that and throw it out the window, but I had to say it.

    From my heart.

    P.S. The bananas are on back order, (you must have a lot of ppl sending them to you) but I'll get them to you as soon as I can!!!

  2. I completely understand why you don't feel like talking to people as you are trying to process all the new information and options. I think those closest to you understand this, and those who don't understand it... well, tough titties!
    You have a lot to think about, and your options come with side effects and consequences that weigh heavily on your mind and emotions.
    I've heard of Thalidomide, and for some people it works very well. I pray that if you go on that again that your results will be amazing. I don't know enough about the transplant to even say anything except that I will keep you in my prayers no matter what you decide to do.