Part of the Plan

There are two ladies who handle appointments at the Marrow Transplant Unit (MTU). They are amazingly efficient at directing traffic, they are calm under pressure, and they even remember my preferred name instead of simply referring to me as Mr. Park.  I watch the two of them and am amazed at their perpetual smiles and how efficiently they keep things moving. Considering the sensitivity of the work on the ward and that there are double the people (patients and caregivers) who are constantly coming and going, it’s actually rather noisy and even confusing, but these two ladies are cool customers!

After I left the hospital Friday afternoon, I got a call from one of these ladies. She told me that on Monday morning, I would be meeting with the doctors to determine my course of treatment – the next part of the plan. I was left with the impression based on the transplant date that I wouldn’t likely be seeing them until some time around the 12^th even though they would be probably meeting on Wednesday to discuss my case. My gut feeling from what I’ve been hearing is that I’ll be undergoing a standard myeloablative transplant rather than the “mini” (non-myeloablative). Because of my good physical condition and age, I’ve been told I can tolerate the rigors of this procedure. If this happens, I’ll be admitted on August 14 and begin a course of busulfin and cytoxan, two very powerful chemicals to decimate my immune system so that the transplanted stem cells will engraft when infused a week later.  There are apparently fewer complications for this procedure than the mini and it will put me on the road to recovery and subsequently home sooner, provided that everything works out well. The other plus – and it’s a big plus in my mind – is that I would not be undergoing total body irradiation. Like I posted yesterday, there are plusses and minuses to both procedures and the big minus to the standard transplant is that it will make me a whole lot sicker than the mini and I’ll be inpatient for about 3-4 weeks.

I met with the transplant coordinator on Friday as well and she advised me that my correspondence with my donor wouldn’t be possible for two years. There are some very strict privacy regulations with respect to donor privacy and my correspondence has to be very generic and can’t even include anything that would indicate the country in which I am living! That leaves things pretty broad, reminding me of the kind of letter a third grader writes to the fireman who visits the class for a super show-and-tell. While I understand confidentiality, HIPAA, and privacy, I have a profound sense of gratitude that generic greetings cannot possibly convey. I’m inclined to believe my donor came from out of the country as the waiting period is two years instead of one, the usual period for domestic donations. When the prospect of a transplant became a necessity back at the beginning of this odyssey, there was some discussion about Germany having a very robust bone marrow donor program. At the time, I joked about coming through the process with a German accent à la Hans and Franz from Saturday Night Live. All I do know as a matter of fact at this point is that my donor is male.  Even though I am genuinely grateful, I tend toward the irreverent (yes, it’s true) and I am inclined to believe my donor is foreign, so I am referring to my donor as Hans from this point forward. He has to have a name after all and I obviously have Northern European genetics. I do hope that I get to meet him face-to-face at some point. I’d very much like to extend my gratitude to him in person. Perhaps by zen, I’ll be talkin vis a German accent and very muscular – ve vant to pump you up!

Hans and Franz from SNL ... pumping me up with stem cells! 

One part of the plan at a time.

In the meantime, I’ve continued to terrorize Seattle as a tourist. The people I’ve met have been wonderful, all great ambassadors of the city. On the road, I’m less inclined to speak in glowing terms and that extends to the parking lot. So, today, instead of playing the alphabet game as I did during the last road trip I took with my sons, my ‘game’ was to spot the most egregious parking job. We came across three pretty good examples in short order. Being a tourist has been both bad and good.  Suffice it to say, anything to move me closer toward returning to life as I knew it, or at least as close to it as I can get, is movement forward. On the other hand, I’m facing some unpleasantness over the next few months, some of which will make me feel pretty durned sick. My sleep schedule will return to the erratic inpatient routine and I’ll get intimate with white-coated folks who are interested in how regular I am. This time, my middle-of-the-night conversations inside my head about mortality will have more gravitas, even though I have no intention of going down that path.

And yet…

There is much to be grateful for and much to look forward to and much to live for, even if it looks different than I had thought it would. It’s all part of the plan

Today’s music from Dan Fogelberg, appropriately enough, Part of the Plan

I have these moments
All steady and strong
I'm feeling so holy and humble

The next thing I know
I'm all worried and weak
And I feel myself
Starting to crumble

The meanings get lost
And the teachings get tossed
And you don't know what
You're gonna do next

You wait for the sun
But it never quite comes
Some kind of message
Comes through to you
Some kind of message
Comes through

And it says to you
Love when you can
Cry when you have to
Be who you must
That's a part of the plan
Await your arrival
With simple survival and
One day, we'll all understand
One day, we'll all understand
One day, we'll all understand

I had a woman
Who gave me her soul
But I wasn't ready to take it
Her heart was so fragile
And heavy to hold
And I was afraid
I might break it

Your conscience awakes
And you see your mistakes
And you wish someone
Would buy your confessions

The days miss their mark
And the night gets so dark
And some kind of message
Comes through to you
Some kind of message
Shoots through

And it says to you
Love when you can
Cry when you have to
Be who you must
That's a part of the plan
Await your arrival
With simple survival and
One day, we'll all understand
One day, we'll all understand
One day, we'll all understand

There is no Eden
Or heavenly gates
That you're gonna
Make it to one day

But all of the answers
You seek can be found
In the dreams that
You dream on the way

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 über-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