Not Just A Little Sobering

After being in treatment for acute leukemia since February, I’ve come to realize that there is no real routine to speak of, especially since arriving in at the Puget Sound Veterans’ Health Care System. I can arrive on time at 8:00 a.m., get my blood drawn with all my compadrés, get my IVs running, and get my golden ticket to head back to the hotel only to see the MTU’s number in my caller ID. It could be as innocuous as letting me know about an appointment, changing my dosage on a medication, or having me come back in for something unforeseen. Any way you look at it, I’m on a short leash and it’s just part of the big picture of treatment. Some days a pain, some days a reassurance, but always something of which I have to be conscious…and there really are no days off, even if I don’t have an appointment at the big white building on Beacon Hill.

Med management is, as I’ve said before, an hour-to-hour undertaking and I’m my own best advocate when it comes to my healing. It means being brutally honest in how I’m feeling at the risk of sounding like a hypochondriac and asking a lot of questions.

This week has been a tough one with respect to the details as well as the big picture, but it started with what might otherwise be seen as routine. Because of my lungs, my attending physician has asked that I come in every day rather than Monday, Wednesdays, and Fridays (which, incidentally was reinstated as of this morning…see? Everything is always in a state of flux!). Outpatient rounds typically devolve into a quick social call where the entourage of medical folks ask how I’m doing, exchange a few details about the lab results from my blood draw with each other, perhaps adjust medication a bit, and move on to the next patient. It’s pleasant enough and they take all of five minutes, maybe ten if Austin or I have questions we’d like to discuss.

Wednesday was really…really different.

It was a conversation that hit me out of the blue about a topic I’d certainly mulled over in my mind, but that I was having said conversation with my attending physician, the head of the Bone Marrow Transplant Unit, took it out of the realm of academic and into the real.

Without preamble, he pointed out that my pulmonary function test from that morning didn’t show any improvement over the previous week, something I already knew. Where he went with that was not just a little sobering. He pointed out that with any intubation, the likelihood of being extubated successfully becomes smaller. He didn’t want to even offer up any statistics in that my survival from the previous two intubations was seen as pretty remarkable. In fact, he suggested that if I were required to go back on a ventilator, the possibility of me regaining consciousness would be unlikely.

This is me in the MICU on a ventilator for the second time. The machine is breathing for me and it was actually a terrifying experience for me in that any time I had to cough, a pulmonary technician had to "help" me and it felt like I was drowning. To communicate, I had an old school clipboard. I'm trying to be a bit funny to make the best of a very bad situation. I was in this contraption, catheterized, being fed intravenously, and really unable to do much of anything for almost a week. Yeah, it sucked, but it kept me alive.
 

How’s that for a conversation opener?

Who, in their right mind, would submit to that? I, already had two awful, PTSD-inducing experiences on the ventilator and to hear that submitting to a third time would most certainly end my life was a bit much. Now, bear in mind, that I’ve already come to terms that my time could come and in reality, I’ve lived a great, fulfilling life, but I’m not ready to cash in the chips yet! I’ve got too much yet to do and too many life experiences yet to live, so this is not something I want to hear. Who would? But I’m still in treatment and there are “TRM – Treatment Related Mortality” statistics for a reason.  People really do die because the treatment is rough, let me assure you, but I will survive, I will survi-i-ive (sing it with me!)

One of the entourage was the staff psychologist and we talked about this death thing in real terms. No, I’m not dying and yes, we’re all still fighting this lung crap with a vengeance. No one is giving up. I will say that I refuse to die in a hospital if at all possible and as much as I find my adopted home town of Seattle endearing and welcoming, my home is the cradle of the Wasatch Front in Salt Lake City and I’ve made arrangements with the University of Utah for the disposition of my remains to be used in training our next cadre of medical professionals as well as donating my organs. It just seems like the responsible thing to me.

I don’t need to tell you that the whole ordeal was a really tough one. I was a bit out of it for the rest of the day. I needed to decompress, but how? I shed a tear or twelve, talked it out with family both email and on the phone and had a barrage of questions for the doctor the next day.

I am pleased to say that the doctor clarified a few things. First, it was a conversation that should have happened after the first intubation, but just never did; Second it was a possibility, not a likelihood; and finally, he apologized for springing it on me the way he did.  Afterward, I felt like he was really trying to work with me rather than back me into some corner. I explained my position and we moved back to the pleasantries that we were used to. Bottom line: game on with the lungs. I can do this and we’re all on the same page once again.

So, we’re back to perpetual med dose changes, being inconvenienced by a short electronic leash, and the sound of IV pumps swishing away and making harsh electronic noises – all things that indicate the war on steroid-induced myopathy, lung malfunction, and leukemia continues in earnest. As tiring as that has become over that past several months, I again say, “Game on!

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

Today’s music is from Dan Fogelberg – Phoenix

I have cried too
I have cried too long
I have cried too
I have cried too long
No more sorrow
Got to carry on

Found deep water
Before I'd even learned to swim
Found deep water
Before I'd even learned to swim
Never thought I'd
See the sun again

Once I was a
Once I was a man alone
Once I was a
Once I was a man alone
Now I've found a
Heart to call my home

Like a phoenix
I have risen from the flames
Like a phoenix
I have risen from the flames
No more living
Someone else's dreams

I have cried too
I have cried too long
I have cried too
I have cried too long
No more sorrow
Got to carry on

You almost had me, old lady
You almost tied me down good
You played the lady in waiting
And I waited as long as I could

Too long the songs have been silent
Too long the strings have been still
I never knew what you wanted
And I guess that I never will

Like a phoenix
I have risen from the flames
Like a phoenix
I have risen from the flames
No more living
Someone else's dreams

I have cried too
I have cried too long
I have cried too
I have cried too long
No more sorrow
Got to carry on

Yeah, yeah, yeah
Yeah, yeah

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

  

Side Effects

I’ve come to the unavoidable conclusion that cancer is a collection of side effects, most of which quite frankly suck. How’s that for eloquence in explanation? It’s a no-brainer that certain habits, certain chemicals, certain actions create an environment where there may already be a higher predisposition toward a particular cancer – the most obvious example would be smoking and lung cancer. Even there, I do the proverbial face plant in reflecting to my nonagenarian grandfather who outright abused his body into his 80s until he finally kicked the habit and ended up living to 99. Go figure!

One of the near-lethal side effects I’ve written about has been my lungs. I do not use tobacco in any form. The doctors have all but told me that had it not been for my lungs, I’d be looking at discharge and heading back Salt Lake City as it appears the leukemia has been licked.  So, at this point, the side effect is something rather unavoidable. Gotta keep breathing, right? But, it’s a bit more complicated than that. To keep some of the other post-transplant issues in check, immunosuppressant drugs and high doses of steroids are used so my shiny new transplanted cells don’t attack my own body or vice versa (Graft Versus Host Disease). It should come as no surprise that these particular drugs have – you guessed it – side effects.

I have been taking high doses of Prednisone which serves as an immunosuppressant and has a number of side effects, some of which are vital in treating the post-transplant part of the leukemia…and it does give me a little boost of energy.  The goal is to taper this off to let my new immune system kick in and take over, but in the meantime, it’s a bit of a ball and chain in that it opens me up to infection. Another nasty side effect is that I’ve bloated to where I don’t look like my picture by some people’s estimation. I have some serious swelling in my face and legs.

And that’s just one of the many, many drugs I’ve been prescribed.

My hat is off to the pharmacists who advise the doctors on the interactions these drugs have with each other, not to mention the dosages that have to be managed on a nearly daily basis. It must feel like a horrible combination of Tetris, Operation, and Jenga. One false move and it all falls apart and my nose glows! And every single patient is different with some variation that throws the normal pharmacological protocol off just a bit.

I found out just how big of a deal two tiny 20 mg pills was this past week. It’s also the reason you haven’t heard from me in a couple of weeks.  After my bronchoscopy, the pulmonary doctors decided that I needed a surgical biopsy to confirm something they pretty much knew and in order to do that, the team consulted an expert at the Fred Hutchinson Cancer Institute who specializes in lung issues as they relate to cancer. In order to do the surgery, my dose of Prednisone would be halved immediately to allow my body to do what it would normally do in infection fighting. The side effect of the dose reduction threw me for a loop! The very next day, all I did was sleep while my daily IVs were being administered. For the next couple of days, I don’t think I’d felt quite so lousy – not sick, just BLAH! Getting out of bed was a feat that I didn’t think I could pull off, but somehow, I managed to do it. The kicker was that my scheduled reduction would be to halve the dose again in the space of only three days to get me ready for the surgery.

The hem/onc team reconsidered and decided that the information they would get from the biopsy wasn’t worth what they were seeing and the dose was put back up to the pre-consult level and it was nothing short of amazing how I felt. Two stupid little pills.

So, the docs are calling it COP (cryptogenically organizing pneumonia. OK, Latin scholars [and you military folk out there, too]. When the root word crypto is employed, it means what? It means something like “we don’t know what it is…let’s break the code.” Same logic here. It’s their way of saying they don’t know what it is. It used to start with idiopathic, but the patients broke that code and retorted, “You don’t know what it is, do you?” So now the docs just say they don’t and are done with it. I am not making this up. So, I have a new couple of pills to treat it as a bad actor and moving on.  Hopefully, this takes care of it and I can play the Osmond’s “Going Back to Utah” as my music of the day very soon.

Now, there are quite a few medications I’ve been prescribed that have been available as their sole function to combat side effects. And I gotta tell ya, I’m profoundly grateful for them. I’ve had procedures that were intensely painful or anxiety-inducing that a nurse’s little helper made a world of difference for this here patient. My threshold of pain and ability to take one for the Gipper (or whoever happened to be the surrogate voodoo doll that particular day) may be suppressed, but nurse’s little helper was gratefully received in ye olde PICC line. Zofran, Ativan, Demerol, whatever keeps me from hurling my lunch into the cute little green tubs, curling up in the fetal position from pain, or crying uncontrollably for no reason, the chemistry is welcome.

Nope…cancer ain’ no fun for no one. Sorry to burst your bubble if you're thinking otherwise.

I wonder sometimes why it is that I cry at the drop of a hat lately. It could be any trigger really, and I’m not talking about a sentimental song (although that happens often enough, too). Sure, there are enough drugs coursing through my chemo-wasted veins that make me a bit extra sensitive to things and I will very much concede that gratitude is one of those things that I’ve come to understand in a completely different way as a result of being at the mercy of literally everyone around me. After all, without the compassion of my nurses and caregivers over the past several months, I’d not likely be in the land of the living – and that is by no means an exaggeration. Clinging to the shreds of life is not something one can do solo. It takes a group of people to hold my arms up when I can’t and holding my hands when I have no strength to grip and there have been a couple of times where I fell flat on my face (literally) where I needed someone to pick me back up and I’ve needed my mama to tell me (perhaps a bit tongue in-cheek...and by no means any disrespect intended) to put me back on her lap reminiscent of the scene in The Help to tell me, “You is kind, you is smart, you is important.” We all need the reminded just who we are, especially in the worst of times that at heart, we haven’t changed and that we matter.

 

Side effect or just tapping into something a bit deeper?

Whatever…cancer still sucks.

Let’s get this lung thing licked and call it a day, shall we?

Be well, stay strong, and much love to you all…and especially you who have held my arms up, my hands in yours, and especially my heart these many months!

Music of the day from Baby James (i.e. James Taylor for you younger people…don’t tell me you don’t know who James Taylor is, please). Shower the People

You can play the game and you can act out the part Though you know it wasn't written for you But tell me, how can you stand there with your broken heart
Ashamed of playing the fool
One thing can lead to another; it doesn't take any sacrifice
Oh, father and mother, sister and brother
If it feels nice, don't think twice

Just shower the people you love with love
Show them the way that you feel
Things are gonna work out fine if you only will Shower the people you love with love
Show them the way you feel
Things are gonna be much better if you only will

You can run but you cannot hide
This is widely known
And what you plan to do with your foolish pride
When you're all by yourself alone Once you tell somebody the way that you feel
You can feel it beginning to ease
I think it's true what they say about the squeaky wheel
Always getting the grease.

Better to shower the people you love with love
Show them the way that you feel
Things are gonna be just fine if you only will Shower the people you love with love
Show them the way that you feel
Things are gonna be much better if you only will

Shower the people you love with love
Show them the way that you feel
You'll feel better right away Don't take much to do
Sell you pride
They say in every life
They say the rain must fall
Just like pouring rain

Make it rain
Make it rain
Love, love, love is sunshine.
Oh yes
Make it rain
Love, love, love is sunshine
Yeah, all right
Everybody, everybody
Shower the people you love with love