Friday, December 3, 2010. That's the day that will determine a lot. On that day, I'll know which fork in the road I take. I recently talked with someone about how I will feel with either outcome, and they advised me not to think about it. It's impossible to anticipate my emotions, so I shouldn't waste mental energy toiling about the whole thing. But I can't help it. So here goes.
I'll start with the medical part of that day. In just two weeks, I'll travel to Boston to see my hematologist. She is one of 16 doctors in the US, UK and Canada who are part of a study looking at idiopathic clotting disorders- in other words, there's no good reason why the clotting occurred. As a population, there's a 10% chance of recurrence each year, and something like 40% over the subsequent five years. That's obviously way over acceptable. Honestly, given the choice of taking a drug the rest of my life or taking a substantial risk of another life-threatening clot in the lungs, it's a pretty easy choice.
Clotting happens in what is called a "cascade," or a series of events. One of the final steps has a byproduct called D-dimer. They can test for the presence of D-dimer. If negative, you're in the clear. If positive, there's a good chance (though less certain than a negative test) you are clotting. The study attempts to stratify patients into different risk levels using this test. In other words, they take this population of screwed up people, of which I am one, and use the test to identify those that can reasonably go off of blood thinners, and those who need to stay on medication.
So in a few weeks, I'll take this blood test and see the results on the spot. One of two things will happen. I obviously hope the test is negative. If so, I'll stop taking the medication right then and go back to Boston for another test in one month. That's because the medical community isn't sure if the medication suppresses D-dimer. If that second test is still negative, I'm good to go. I'll just go back to Boston every six months to check in. On the other hand, if either of the two test are positive, I'll be on medication for at least two years, if not the rest of my life.
So there you have it. Option A means I resume life and training as I choose. Option B means I keep taking medication, which prevents me from bike riding and therefore triathlons. Sounds pretty straightforward and obvious as to how I might react. But it isn't.
I really want Option A. It will allow me to bike, race, ski without concern, and otherwise put me in situations that are risky for someone on blood thinners. I've worked damn hard to get good at triathlon, and I think I have a couple more years of getting faster. Not just better in my AG (which is relative to others), but faster in an absolute sense. I have unfinished business in the sport. Someday I'd like to go to the World Championships and wear the USA uniform. Be a NOAD. New Zealand '12 might be a bit too far, especially for a sprint, but maybe it will be held closer to the US in 2013.
However I can make the argument that these athletic endeavors can be replaced if things don't work out. Although I qualified for Boston in 2003, I never did the race. It's on my bucket list. In hindsight, I think the perfect sport for me would have been rowing. I have the size, determination and enough athletic ability. There are masters boats in the Head of the Charles. That is also on my bucket list. And swimming is also an obvious choice, although I don't have a big goal in mind. I've spent enough time looking at the black line. There are other things I'd like to do that could satisfy my competitive desires.
But honestly, it isn't just about sports. In fact, while they are a big deal, they aren't biggest deal. It's all of the other life issues that come along with blood thinners that I don't want to live with. Currently, I have to be careful with how much Vitamin K I eat. That means monitoring my intake of green vegetables. I love a huge green salad. I can't have much alcohol. I have never been much of a drinker, but I do enjoy it now and then. I haven't had more than two drinks in one day in over six months. I have to wear a medic-alert bracelet. Every day, my watch alarm goes off at 6:00, reminding me to take my medicine. I have to get my blood drawn every month, if not more often. So there are all sorts of issues that come with the drug, many of which are in my face every single day.
To me, it's about being limited. I've always been a bit stubborn- I don't like to be told what I can and can't do. I want to be the one to decide. I don't like limitations. I want to do what I want to do. I don't like the concept of being "tied down" for somewhere between the next two years and the rest of my life. That's a long time.
So as I said earlier, it sounds pretty obvious. But let's consider the downside of Option A (and therefore the upside of Option B). Within days of going off of blood thinners, it's out of my system. My safety blanket is gone. I wonder if I'll forever be looking over my shoulder waiting for Mr. Clot to strike. And if he strikes, will it happen in the same way, or could it be more sudden? Is it possible that the clot makes it through my PFO (that tiny hole in my heart), travels to my brain and causes a stroke? I'm assured it's a very small risk, but that thought will be there. I'll be forever hypersensitive to chest pains. Given the choice of Option B or a life-threatening or altering clot, I'll go for Option B in a heartbeat. The docs don't have all of the answers. Hence the study. Like any study, their theory might work for some but not others. So there's a chance it doesn't work for me.
That's it. I go to Boston two weeks from today for a test I can't prepare for. I don't know how I will react to the result, whatever that is. We have all had deadlines and exams before that can have an impact on our futures. However I've always been able to do something to increase the chances of success. This test is not only out of my control, but is more serious.
Regardless of the result, I know this entire episode has taught me lessons I otherwise never would have learned. I appreciate life and those around me much more than before. I value what I have and my surroundings much more. And I also know I have friends and family that care a great deal for me and wish me the best. It's heartwarming. Those things won't change.
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You know the rules....keep yourself safe, put a little joy into your life and those around you who you think may merit it, and never ever- that's never ever- pass up an opportunity to kiss someone you love.
Tuesday, November 16, 2010
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Good luck, then. I will be thinking of you come that day in two weeks. It is extremely taxing to not feel like you have control... that the result is whimsical--completely unrelated to anything you have done to or for yourself. I'm thinking of you. I hope it goes as it should.
ReplyDeleteI am very impressed with your attitude about what you will do if the tests don't come back negative and you've got to stay on the medication. As devastating as I'm sure that outcome would be, to see you be so pragmatic and level-headed about it speaks volumes about the kind of person you are. That said, I'm hoping and crossing my fingers that everything comes back negative and you're good to go.
ReplyDeleteGood Luck Steve, I'll be thinking of you and will be praying for option A for you as well. I know how much you love doing triathlons. I'm sure what is meant to be will happen and we will all hope for the best.
ReplyDeleteI'm still holding out for option C (where they figure out that your clot was caused by something stupid, like eating lima beans, and they tell you not to eat any more lima beans--which are rather icky anyway--and you'll live a happy healthy kick-ass life).
ReplyDeleteOr option A. Good luck, Steve! I'll be thinking about you on the 3rd.
Steve I hope it all went well..... I was thinking about you.
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