Wednesday, April 17, 2013

A Day Without Rain

Utah is an arid state.  We have some of the most beautiful red rock deserts and the winter snow is the most powdery in the world (in my humble opinion...and that of the chamber of commerce).  The “greatest snow on earth” isn’t just a nice tag line for our license plates, it’s enough to get a certain circus upset at us because it sounds a bit close to another famous tag line!  The arid climate that produces the world famous powder has another effect in that we don’t get a lot of rain, so there are numerous reservoirs around the state to ensure we have adequate water. Back in 1983, there was so much snowpack in the mountains around Salt Lake City and so much rain in the springtime that the flood waters were diverted into some of the city streets. The Great Salt Lake got really close to the airport as it had no place to go. That is, after all, why it’s so salty. Despite the floods, enterprising people made the most of the flood and I can remember a picture in the newspaper of one restaurant with a sign, “you catch it, we cook it” on State Street, Salt Lake’s main drag.
State Street, Salt Lake City in 1983

I’m not really writing about water, but I use the picture to illustrate a day in the life, so to speak. I tend to be able to hold a lot in. Not much fazes me and it takes a lot to get me riled. Once I am, it takes a while to calm back down. If you treat each  of these trials or inconveniences I face in working through cancer as a rainstorm, you might say I’m very much like one of these larger reservoirs. It accumulates and it evaporates or flows downstream over time.  Not a big deal. The problem is that there are a lot of rainstorms lately and I’m finding that the reservoir is rather full and it doesn’t take much to overflow at this point.

And this week has felt like the times that “try men’s souls,” well at least my soul. And like the illustration above, it’s not that there has been one particular thing that has beaten me down, it’s just that there’s a lot coming hard and fast.

In talking with my hem/onc this morning, I don’t feel as restricted as I did, but there seems to be less certainty of anything. This is more about the art than the science because the lynch pin in treatment is the transplant, which is something, by his own admission, where he's not an expert. That expertise resides in Seattle. So, if it works as planned, then all the great statistics prove true and everyone will be clinking their glasses together with big smiles, myself the biggest of them all! Between here and the toasting is a series of big question marks. Part of it is timing, part of it is identifying a willing donor with as many matching HLA markers as possible, part of it is how my body responds to the new stem cells, and part of it is just plain dumb luck.

It’s difficult to comprehend this all in reality, not because it’s unknown, but because there are several uknowns. Yet, despite the stark language of lab reports, the non-committal verbiage of the reference materials, there are many, many survivors. And this is the silver lining to that big rain cloud: I seem to be coming across a lot of them lately, some of whom I didn’t realize were in my new exclusive club. And it’s not that I couldn’t talk with friends and family, but there’s only so far you can go with someone who hasn’t been where you are. And that’s a difficult place to be because you want to badly to be able to pull the closest people to you into that inner sanctum, but you don’t want them to have to go through what you are in order to understand it. Yet that is sometimes the only way to relate what’s going on in your chemo-brain addled, emotionally fragile, frightened mind! But neither would I consider paying someone to be my best friend, even if it were covered by insurance. Only someone who has walked a mile in these shoes can fully comprehend what it is that I’m feeling…and for me, face-to-face is the only way to communicate that much-needed depth.

The VP of business development where I work connected me with someone who has been in remission for about a year. I spoke with him this morning before my doctor’s appointment. The ease at which the conversation flowed reinforced that need and I will have someone I can talk with locally. When I checked in for my appointment, the nurse who took my vitals and I struck up a conversation and instead of the 5-minute perfunctory exercise in numbers, we chatted for almost 20 minutes and ended up crying and hugging each other as she was a survivor since 1992. Just before the doctor came in for my appointment, another nurse who was with me the day I received my diagnosis gave me a huge listing of resources from the Leukemia-Lymphoma Society. I stopped by their offices because I had an errand nearby and found that they have a program for exactly what I needed – another local leukemia survivor that the LLS matches specifically to me with whom I can just talk. They also listed support groups near my home.

For me, the flood waters aren’t extreme, but I’m still doing my best to be enterprising and positive (although I'm not cooking your fish...I'll help you eat it if it's a particular geometric shape though and dipped in beer batter). Again, that’s how I’m wired, but it’s a long rainy season ahead from everything I see. You can be assured that the jokes, the smiles, and the positive, if not offbeat, attitude will still be there amid the rainstorms, but if you’ve ever been caught in a cold rain, you know how miserable it can get…and how really comforting it is to be taken in to be dried off and warmed up. I can’t thank enough those of you who have opened your hearts and made a place by the fire for me. OK, so I mixed my metaphors a bit, but the point remains that this is tough, it’s going to be a long haul, but your continued love and support will make it bearable.
Today's music - Enya's "A Day Without Rain"

Be well, stay strong, and much love to you all J