Monday, December 2, 2013

Outa Control

I’m no control freak, but like most people, I do like to be able to take care of myself. It’s part of that being an adult thing. The day you’re diagnosed with a debilitating, life-threatening illness, control is kinda thrown out the window.  If the pronouncement, “You have acute myeloid leukemia” isn’t bad enough, the treatment will take you down a few more notches to the point of indignities galore. Then there’s the recovery phase where I am. Even though there is an overall game plan to beating this monster, it feels so out of control some days that you just want to put your hands over your ears, fold up into a fetal position and scream for it to just stop.

Cue the silence.

When I came to Seattle, that plan consisted of baseline testing to ensure I was still in remission and a viable candidate bone marrow transplant; chemotherapy to essentially decimate my immune system to receive the donor stem cells; and a 100-day post-transplant regimen to keep GVHD (graft-versus-host disease) in check while the new cells engraft. Ideally, on “Day 100,” we’re looking at getting discharged, fists pumping all-round, and heading home to the ‘new normal.’

Today is that very “Day 100” from my transplant date, however it’s going to have to pass as a milestone for me because in my case, it’s now about my lungs – specifically my right lung – one of those unforeseen and nearly lethal side effects of the treatment. That doesn’t mean there isn’t improvement because there actually is. It just takes time and you guessed it, it involves things that are out of my control.

Side effects being what they are, you can’t push this kind of thing. The body will respond when  it responds how  it responds if  it responds at all. Having spoken with fellow transplant patients, some of them are on their second and third transplants because their first and second grafts didn’t take.  Mine obviously (and thankfully) did. (Thank you, Hans*, my mystery donor!) Again, though, it’s totally out of our control. We watch our lab numbers and hope that they’re going in the right direction; we wait for our bodies to respond appropriately to the meds and our shiny new stem cells; and we hope for the doctors to give us the thumbs-up to go to our homes instead of back to the hotel for another night of captivating TV entertainment and away from where we’d rather be.

I’m honestly not a very good complainer or kvetcher (if that’s a word!), but after all these months, there are days where the 24/7 medication management becomes wearisome, the fatigue from said medications, the endless hospital visits, and so on just become overwhelming. I concede it’s OK to have a bad day here and there, but I’m generally a positive upbeat kinda guy and this has depleted my emotional reserves and I’m feeling it a bit more acutely these days. As much as I’ve tried to put my best face forward and keep smiling, my past few postings have bordered on rants, I’ll admit. What can I say? I’ve been through a lot and am pretty tired of it. Who wouldn’t be?  I’m not alone in those feelings, I’m sure and I’m certainly not the first to have discovered that cancer sucks. But I’m being real - it’s raw, it’s honest.

I obviously have a lot of time to think when I’m flat on my back or in a chair getting an IV med, so my warped and hopelessly trivial mind goes to the opening scenes from the TV series Kung Fu where the master says, “When you snatch the pebble out of my hand, it will be time for you to leave.”


Although one of my attending physicians is an awesome Asian guy, he has no such litmus test for me, no martial arts training on my schedule, and he’s more adept with modern Western medical technique than ancient herbal remedies…and the ‘it will be time for you to leave’ is pretty open-ended. It’s out of my control. And his as well, really.

So…when can I leave?

I certainly don’t want to be discharged too early to find out I need to get back to Seattle for more medical fun-ness, so I’m not pushing anyone for hard and fast dates or even decisions, but it’s always good to get a big picture idea of where I fit. I get signals here and there and I’m reasonably sure there is light at the end of this tunnel that isn’t the freight train coming back at me at the end of the month. Suffice it to say, Sandy Claws is going to have to make sure he got the temporary address forwarding memo from the post office, but not too much longer than that. I hope. So, my Christmas playlist will not include I’ll Be Home For Christmas this year, but I will have visitors from home which will make my season brighter by far.

That could all change of course, so I’m not making plans…after all, it’s all out of my control.

I still look for and find the bright spots in this journey called cancer. They’re out there and I have to seize them to keep sane and looking forward. Choosing to see the positive, to be positive in the midst of a rather negative situation is something for which I do have control.

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

* - I’ve nicknamed my donor Hans because the only thing I know is that I’ve been told he’s male and circumstances lead me to believe he is from Germany based on donor anonymity regulations. Well, I know he has O+ blood because that’s now my blood type instead of AB+. I guess I’ll find out about any allergies and other neato stuff like that as time goes on.

Today's music is from Michael Bolton - Go The Distance


I have often dreamed of a far off place,
Where a hero’s welcome would be waiting for me.
Where the crowds would cheer, when they see my face,
And a voice keeps saying this is where I'm meant to be

I'll be there someday, I can go the distance.
I will find my way if I can be strong.
I know every mile would be worth my while,
When I go the distance, I'll be right where I belong.

Down an unknown road to embrace my fate,
Though that road may wander, it will lead me to you.
And a thousand years would be worth the wait.
It might take a lifetime but somehow I'll see it through

And I won't look back, I can go the distance,
And I'll stay on track, no I won't accept defeat,
It's an uphill slope,
But I won't lose hope, 'til I go the distance
And my journey is complete, oh yeah.

But to look beyond the glory is the hardest part,
For a hero’s strength is measured by his heart, oh...

Like a shooting star, I will go the distance,
I will search the world, I will face it's harms,
I don't care how far, I can go the distance,
'Til I find my hero’s welcome waiting in your arms.

I will search the world, I will face its harms
'Til I find my hero’s welcome waiting in your arms