Monday, July 29, 2013

The Next Chapter

It has been a long five months of treatment for my acute leukemia which has consisted of one really rough round of induction chemotherapy (one dose of toxic chemical goodness and three dances with the ‘red devil.' That was fun!), four rounds of intrathecal chemotherapy (directly into the spinal column. Yeah, that was fun, too!), and four rounds of consolidation chemotherapy (six doses of toxic chemical goodness over five days per round). That translates into 51 inpatient days of great good fun, but doesn’t include 41 blood tests (in addition to cross type and screenings for the 11 units of blood and 4 units of platelets – a.k.a. ‘the yellow goo’ I got), 4 bone marrow biopsies (3 of which hurt like hell), 4 uncomfortable PICC line installations, 4 blood cultures (one of which required an ultrasound just to find a vein to draw...that one hurt), 2 claustrophobia-inducing MRIs, two CT scans, a bone scan, a pulmonary screen, a couple of EKGs, a spinal tap, and who knows how many X-rays and a partridge in a pear tree ... and probably a bunch of other things I’ve forgotten or repressed! WHEW!
Since I've been advised to enjoy the sunshine
while I can, I'm being a tourist for a few days.
I’ve finally arrived in Seattle to begin the next chapter in this grand adventure called cancer which is the bone marrow transplant. It’s exhausting to tally up those numbers. I probably hit the low side on a couple of those stats, but who’s counting? Up to this point, the transplant has been off in the distance, something I’ve been eagerly anticipating and dreading at the same time. Without it, the leukemia will return and take me out of the game permanently, so foregoing the procedure really isn’t an option. With it, I’ll be rather sick as the powerful chemo will knock down my immune system to nothing so that the transplanted stem cells can engraft to my marrow and kill off any remaining cancer cells. It’s a big deal. Suffice it to say, I have been working through a lot of anxiety over this…and I’m also finding that I’ve, once again, worked myself into a frenzy where I may be overdoing it. And then again, maybe not.
You see, there are different levels and types of transplants.  First, there is the autologous transplant where the patient’s own stem cells are harvested and then once the immune system is knocked down, they are re-infused and will restore things. Then there is the allogeneic transplant where a donor’s cells are infused.  Within this second and more common type, there are two kinds: myeloablative and nonmyeloablative (or mini-transplant). The mini-transplant, as you might imagine by the name is less arduous, but the end result is the same: I’ll be getting a new immune system and life as I know it will change pretty substantially.  There really is a “new normal.”
Since arriving on July 25, I’ve been undergoing a lot of the same tests I had the first couple of days after I was diagnosed. We’re setting a new baseline here and from these results, the doctors will review my case and decide what kind of transplant I’ll be undergoing.  There are plusses and minuses to both full and mini-transplants. The full transplant actually takes less time here, but will be considerably rougher to navigate as there will be about three weeks of intense inpatient chemo and radiation. Meanwhile, the mini will be almost exclusively outpatient, but the average stay in Seattle is about six months instead of four for the full. It also demands more responsibility on my and my caregivers’ parts.
So far, I’ve had a new EKG, a dental exam, a blood draw, a pulmonary function test, a visit with the ophthalmologist, a consult with the pharmacy team where I was introduced to the mother of all pill boxes to keep track of everything, and a chest x-ray for good measure. My favorite was a trip down to nuclear medicine where a small vial of my blood was mixed with something so radioactive that the technician had the mixture inside a lead-lined container and resulting in this conversation (not making it up)

Tehcnician: "You don't plan on leaving the country this weekend, do you?"
Me: "I was thinking about going up to BC and seeing Vancouver, but probably not this weekend."
Technician: "OK, well if you do decide to go, let us know so we can get you a letter. You will set off the Geiger counters at the border and at the airport."

Me: (unscrews face that would say, "Really?")

My next consult was with someone who had thyroid uptake tests and got a card to let people know she was radioactive. What a glowing report I got!  I also got to chat with the psychologist who didn’t even ask embarrassing questions that would make Sigmund Freud proud. I got to keep my PICC line instead of having a semi-surgical procedure to get a Hickman port installed. That was great news since it’s one less painful thing I have to undergo.  I found the reasoning had to do with the fact an autologous transplant ain't in the cards for me.  I met my new ΓΌber-nurse who, after many years in Seattle, has yet to lose her Brooklyn accent. I can tell already that the nursing staff and I will get along just fine! The two ladies at the reception desk are sharp as tacks and I know they’ll also take good care of me, even if they never wield a needle…they wield a phone and a pen just fine. Tomorrow I meet the transplant coordinator and one of the doctors, so I can start peppering people with questions…and getting answers that will be either really scary or make me want to do the happy dance.
In the meantime, I’ve met a number of fellow transplant patients and their caregivers. My son, Austin, has also making friends and comparing notes while I’m in compromising positions with the doctors, nurses, and technicians. All but two of the people I’ve met so far are undergoing the mini-transplants; the other two are doing autos. No one I’ve met so far is doing a full transplant.  The psychologist told me this morning that I’m right on the cusp both age-wise and physiologically to do either. She readily admitted though that she doesn’t make that decision, so we’ll find out when the doctors meet to discuss my case, which should be in the next 1-3 weeks.  In the meantime, I was told to enjoy Seattle and make the most of the sun…the sun will be my mortal enemy after I get the transplant. I’m feeling more like I will be a vampire when this is all said and done! So, I’ve been staring longingly at my cargo shorts and polo shirt. While not a thing of the past, I may be taking out stock in sun block or at least buying it in bulk at Costco year-round.
All in all, I’m feeling both encouraged and intimidated as there’s give and take on this next chapter of my treatment. But there’s still a lot left to find out. We have a lot to learn, a lot to discuss, and a lot for which to be tremendously grateful.
Thanks for hanging with me…it means a whole lot, especially as I’m now out of pocket in an extended stay hotel for the next few months. If you’re up in the Seattle area, please do look me up. I’ll leave the light on for you, even if I’m not in a Motel 6.
Be well, stay strong, and much love to you all!
Music for today – Everybody Hurts by R.E.M.
When the day is long and the night
The night is yours alone
When you're sure you've had enough
Of this life, well hang on
Don't let yourself go, 'cause everybody cries
And everybody hurts sometimes
Sometimes everything is wrong
Now it's time to sing along

When your day is night alone
(Hold on, hold on)
If you feel like letting go

(Hold on)When you think you've had too much
Of this life, well hang on

'Cause everybody hurts take comfort in your friends
Everybody hurts

Don't throw your hand oh, no don't throw your hand
If you feel like you're alone, no, no, no, you are not alone
If you're on your own in this life
The days and nights are long
When you think you've had too much
Of this life to hang on

Well, everybody hurts sometimes, everybody cries
And everybody hurts sometimes
And everybody hurts sometimes so, hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts
No, no, no, no, you are not alone