I’m glad that we chose to view this as a journey. In planning a trip, you map out the best path to take, consider where you want to stop along the way, and what all you want to see. It is usually defined by the amount of time you have, whether it’s one week, two, or for the lucky few even a month.
Once you set out, there are road signs along the way that guide, advise, and even provide warnings. Sometimes you run into an unexpected detour, which takes you off your planned path, and you have no idea where you are!
In the short time since I was diagnosed, our journey has already encountered several signs. When we first learned that I had CLL, the sign said “SLOW.” No hurry. No real worries at this point. Most people live for decades. And when the time comes that treatment is needed, it will be fairly mild. You can still work. You won’t lose your hair.
Within a couple weeks, we got test results showing that my white blood count had doubled in two months. (We had already read that doubling in six months would trigger treatment.) The traffic light just turned GREEN. Then when the 17p deletion result came back minutes later it was like a semi-truck was barreling down the road behind us, blaring on his horn…GO, GO, GO!!!!!
Next we learn of the proposed chemo regimen, get on schedule with MD Anderson for all my pre-transplant tests, accept the fact that now I AM going to lose my hair, not be able to work, not be around crowds…. The Speed Limit went from 5MPH to 70MPH!
Then today, it was back to the good doctor. Another finger prick revealed that my counts went down a little this week. What kind of sign is that? Are we still on the same road? Is our destination still the same? Do we have a different arrival time? Today’s test allowed the sign “PROCEED WITH CAUTION” to be added. The good doctor in reviewing the pros and cons of FCR was concerned that it might not be the best choice for pre-transplant chemo. We learned that once you use it, your body could never handle it again. And it might do so much damage to the bone marrow that the transplant won’t take as well. So fortunately there’s not just “ONE WAY” to deal with this.
This sign is allowing the good doctor to consider another chemo option…Treanda Rituxan, also known as BR. (It’s not a typo. But I don’t remember where the “B” came from.) He is going to consult with the heads of the bone marrow department at MD Anderson. (Paul recognized their names as they have written many of the articles we’ve read.) So, we will follow the signs to MD Anderson on October 10 to begin my bone marrow evaluation and testing process. My brother and probably others will be tested until we find a match. The good doctor will review my case with his peers “AUTHORIZED PERSONNEL ONLY” and decide when, where, and how to proceed. I’m glad that someone besides me is driving! But I am very glad that we are studying the map together.
The transplant is inevitable, unless God decides on an old fashioned miracle. We are just not sure if it will be in one month, two months, or a few more. There are many variables. My test results, continued blood counts, finding a transplant match, watching for any growing symptoms. We do not want to see “BUMP AHEAD.”
“BUCKLE UP!” It’s going to be quite a ride.
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