Thursday, August 1, 2013

This is Spinal Tap – or – The Calm Before the Storm


Most of my time as of late has been spent in having baseline tests run and meeting the new medical staff, learning the new names, asking all the questions I can think of as well as the questions behind the questions. I’ve managed to get lost in the massive Seattle VA Hospital and wandered into the Emergency Room after taking a wrong turn, much to the amusement of a nurse. And *why* do the doctors look so young? Did Doogie Howser, MD take a spin through here?

While waiting and in between procedures, I’ve been chatting up my fellow transplant patients. Some of the caregivers have proven pretty opinionated, but my compadres with PICCs and ports are, to a person, really friendly and great to talk with. With nothing more than a handshake and a name, we’re all old friends already. A few of them have AML like I do, but the different conditions where bone marrow transplants are the prescribed protocol keep it interesting. I can’t pronounce all of the conditions, or drugs yet, but I do see that, once again, I’m the young buck on the ward.
My transplant has been hard-scheduled for August 21, which means the doctors have to decide my treatment protocol within the next couple of days. Depending on who you ask, there’s reasoning for either the mini or standard transplant. Each has its plusses and minuses, each has a lot of unknowns, and certainly each has its risks. But both have the same end result: I’ll have a new immune system and a new lease on life. My level of anxiety has been ratcheting down some as my burning questions are being answered, but there are still a lot of unknowns in a procedure that reminds me more of art than science. It really is a pharmacological miracle.
Bone marrow biopsy #5.
Lovely, huh? Drill, baby, drill.
Yesterday, I finished up my baseline testing prior to the transplant. Despite having had a bone marrow biopsy just a couple of weeks ago, I got yet another one as well as a lumbar puncture or “LP” as it’s called in the business. You might also say … wait for it … this is spinal tap. Of course, the procedures were done back-to-back, no pun intended, or maybe so. After all, both procedures are done on my back and they were done within minutes of each other.  Talk about fun! They were a bit more liberal with the pain killers (yeah!) and they let my son take some up close and personal pictures that show lots of nauseating detail for those who like that sort of thing. The only thing I need to do is get my PICC line dressing changed on Fridays and I have classes I get to attend with my son so we know the process for caregiving. So now, with the transplant’s scheduling and my testing done, that leaves a lot of time between now and then which is essentially unscheduled. The advice from the medical professionals: go see Seattle.

So the doctor’s orders have just taken a really nice turn!
This is Spinal Tap! (and yes, this really is me)
I should start by saying that the first scrip from the doctor right after my biopsy/LP for the post spinal tap headache was caffeine. He even said that on some occasions, they can give caffeine intravenously. And to think, all this time I thought that clever bit of repartée was something I said when I was dog-tired. Nope, they apparently really do it! So, with my two sons in tow, we took that medical advice literally and interpreted it in the words of good Will Shakespeare (I know he said this, don’t ask me how), Get thee to a Starbucks! I had to make sure my boys were in no pain as well after all. Since I had a little residual buzz going from the Demerol, my pinch-hitting photographer son now got to also be my chauffeur. Versatility Я Us!
That’s not to say that some sightseeing wasn’t already in the cards, but now it was doctor’s orders. Over the weekend, I met up with some high school classmates and took the scenic water tour on Lake Washington and Lake Union replete with some incredible kebabs on the barbie and some chipotle jam that will be in my cart the next time I hit Costco (Muchas many thanks, Bill & Michelle!). We found a deal at the base of the Seattle Space Needle that got us in to a number of local attractions with a significant discount, so in addition to the Space Needle, we’ve gone to the EMP Museum, taken a cruise around the harbor, visited the Seattle Aquarium, took the monorail over and wandered around the Pike Place Market. And yes, we made a pilgrimage to the original Starbucks. We still have tickets for the Museum of Flight and/or the Zoo (we have to pick one) and the Pacific Science Center. The Chihuly Garden and Glass Exhibition looks interesting and is right at the base of the Space Needle, so we may try that out.
Cruising around Lake Washington (l to r: my classmate Bobbie,
my son Austin, and Bobbie's son Wyatt on Bill & Michelle's
boat, the Mr. B
It probably sounds like it has been a busy week and, to be fair, it has been. On the flip side of that coin, once the transplant conditioning regimen begins, there won’t be much of anything going on outside the confines of the hospital for a few weeks and then it becomes a matter of a long, slow recovery to the new normal.
If you’re a Facebook friend, you can check out the pictures here; if you’re on Google+, you should be able to access the photos of us obeying doctor’s orders here.
With the iconic Seattle skyline in the background,
we had a great day for a cruise around the harbor.
In a real sense, this feels like the calm before the storm. There will be a lot of pain, discomfort, and all around yuckiness in the coming weeks, so I’m really grateful that these days leading up to that time is filled with some good memories with my two sons and of the city where the procedure that will keep me alive was pioneered. Sure, there is still some anxiety there over the unknowns and let’s face it, there will always be unknowns, but with the help of friends and family, I’m shedding the extra blood pressure and remembering that life is good and laughter is important and that making memories is more important than accumulating stuff, even if life is tough, the jokes are cheesy and the stuff is pretty cool.
Be well, stay strong, and much love to you all!  Oooh! Shiny object! Uh, Ritalin®, anyone? OK…give me the toxic chemical goodness and let’s get on with it!
Today’s music is from Linkin Park – Iridescent
When you were standing in the wake of devastation
When you were waiting on the edge of the unknown
With the cataclysm raining down
Your insides crying, "Save me now"
You were there, impossibly alone.

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

And in a burst of light that blinded every angel
As if the sky had blown the heavens into stars
You felt the gravity of tempered grace
Falling into empty space
With no one there to catch you in their arms.

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

(Instrumental Break)

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

Let it go.
Let it go.
Let it go.
Let it go.

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.