Better Life Through Chemistry

I never had one of those chemistry sets from the Sears Wish Book, but to be sure, that was me from a very young age. Yeah, I looked at all the toys and fun stuff all the other kids did, but I coveted the really cool stuff (ok, cool to me anyway!) like the chemistry and erector sets. My mom saved S & H Green Stamps and got my sister and me toys at the local redemption center, but blowing the house up with chemicals was not in the cards! Besides, I didn’t need chemicals to wreak the kind of havoc most 7 year-olds are capable of. I did that all buh mah-sayulf! I did get the erector set a few years later.

Look familiar? I can't tell you how long I used to ogle those pages for things I just couldn't live without!

I told all my relatives that I wanted to be a scientist and they took that young zeal of mine to heart. I remember my uncle coming back from Vietnam with gifties for all of us.  For me, he brought a microscope in a wooden carrying case. It had slides and cover sheets and it even had chemicals to stain and preserve my finds. It was a way cool present for a budding egghead nerd like me. In high school, I would all but stage a veritable coup d'éducat by rather publicly transferring out of my AP Chemistry class and into Aerospace Science - the harbinger of things to come. Some years later, I would forget that nerdiness altogether and become a way cool Navy pilot, complete with leather flight jacket, wrinkled flight suit, cocked garrison hat, and Ray Ban aviator shades! But…

I never forgot my humble egghead origins.

And I actually got called an “Eastern egghead” by a French student in La Place Clichy in Paris. This same student was adept in using English profanity, much to my chagrin – even had the right context. Shows you what a Sorbonne education will get you.

So, here I am today with a long tube connected to my PICC line, infusing that lovely toxic chemical goodness into the vein just above my heart. I can tell this is some powerful stuff by the amount and type of pre-meds I’m swallowing out of that little tiny cup the nurses give me about half an hour prior to 'go' time. I get a tad light-headed from either the pre-meds or the chemo (I’m not sure which), but I’m still feeling decent and able to think clearly. I had the staff psychologist tell me that I may not actually take a nose dive until about seven days post-transplant, but we shall see.  I’m in no hurry to go down that road. Today is actually considered Day minus 5 even though it’s the 3^rd day of chemo. Day 0 is the day of actual transplant infusion.

I’ve come to the unavoidable conclusion that *I* have become an incarnation of the Sears chemistry set. Trust me, that is not a narcissistic declaration! Each one of us that comes through the MTU is an experiment of sorts. While each of us has some sort of blood or bone malady that requires a stem cell transplant, we all have unique genetic make-ups that determine the likelihood of survival of such an arduous procedure and ultimately how well, if at all, the graft takes to our bodies. And then there are the statistics and the intangibles. Things like metabolism, physical health, and even attitude all play roles in how well we come out of this on the other side. All of those factors create an incredibly complex puzzle for a team of doctors to work out and solve – and I would be one of those puzzles.

In speaking to another marrow transplant veteran, he told me that this process was nothing short of a pharmacological miracle. Considering I’ll have no outside physical manipulation, no radiation, and no surgery to repair my broken immune system, it is exactly that. It is all chemistry. Until yesterday, I had no idea there was even a field called pharmacological kinetics, but there’s a group of pharmacists that very precisely gage what is happening inside to in turn determine the exact gnat’s buttock of how much toxic chemical goodness I should receive. I also get a handful of pills that stave off really nasty nausea, seizure, and other lovely side effects that probably would make those ads on TV look pretty appealing. I guarantee you, there will be no ad encouraging you to “Ask your doctor if Busulfan® and Cytoxan® are right for you!” This truly is one of those, don’t call us, we’ll call you things. Pray you never get that call!

No sooner than the nurse flipped the IV pump on a few days ago, I went into chemo precaution mode, which means I am a sorta kinda toxic waste site. No one else can use my inpatient bathroom and I have to flush twice when I actually use the toilet.  In the meantime, I serve as an overqualified filter and drink incredible amounts of water, which naturally makes sleeping problematic. I then get to collect said premium, filtered, and processed chemo (i.e. urine) in cute little bottles for them to measure. During my inpatient stays, my intake and output is measured pretty carefully. Do you know how many cc’s are in your little half pint of milk? 236! That’s how many (most just round up to 30 cc's per fluid ounce). I also know that my full bladder is about the same amount as that little half-pint of milk, probably putting me in league with those people with IBBS (Itty-Bitty-Bladder Syndrome). Well, it feels like that anyway.

Yeah, in a sense, my routine has been reduced to intake of one set of chemicals that are prescribed carefully and then processed and filtered into another set of chemicals we monitor so we can start that cycle all over again.

How cool would that be? Adding to the fun, I have friends who ride Harleys for exactly this occasion. No, really!

While I have a little self-deprecating fun with all this, I know there’s a real art to this particular medical science. I’ve come across professionals since starting this that wanted to see me because I was not conforming to the mold. When I was diagnosed, I had 50% blast cells in my marrow. I found out some time later, that should have soundly debilitated me, but I was essentially ignorant to what was going on inside because I felt so good. A team of curious white-coated doctors gathered around my bed wanting to see the guy who felt so good in spite of the numbers. Even Wednesday, the pharmaco-kinesthesiologist (if such a title exists) wanted to see me because my system processed the chemo exactly according to his calculations. I think that’s good, right? He was apparently elated…but he didn’t end up coming to see me.

You know, though, I really hope that these people who attend me get super excited every time things work out; I want them to fist pump the air and with unabashed enthusiasm; I want them to shout for joy when one of us is feeling great and leaves the hospital for the last time because of what they did; and I want them to go home with an ear-to-ear smile, knowing that they performed one of those chemical miracles, that they saved not just one life, but a whole group of people who look to those of us who, because of no clear reason, just got awful damned sick. We…*I*…depend on people like that.

Do me a favor: go tell someone how much you appreciate what they’ve done for you. Bonus points for doing something nice for someone who can’t return the favor.

Be well – so well that you never know what it’s like to be where I’m sitting now.
Stay strong – because there are those who need you; and
Lots of love to all of you.

Music today … I had considered My Chemical Romance’s Thank You for the Venom for the title alone, but the music doesn’t feel like it’s mine.  So, we’re going with Chaka Khan’s Through the Fire

I look in your eyes and I can see
We've loved so dangerously
You're not trusting your heart to anyone
You tell me you're gonna play it smart
We're through before we start
But I believe that we've only just begun

When it's this good, there's no saying no
I want you so, I'm ready to go

CHORUS:
Through the fire, to the limit, to the wall
For a chance to be with you
I'd gladly risk it all
Through the fire
Through whatever, come what may
For a chance at loving you
I'd take it all the way
Right down to the wire
Even through the fire

I know you're afraid of what you feel
You still need time to heal
And I can help if you'll only let me try
You touch me and something in me knew
What I could have with you
Now I'm not ready
To kiss that dream goodbye

When it's this sweet, there's no saying no
I need you so, I'm ready to go

CHORUS

Through the test of time

CHORUS

To the wire, to the limit
Through the fire, through whatever
Through the fire, to the limit
Through the fire, through whatever
Through the fire, to the limit
Through the fire, through whatever

Embrace the Suck

Just when you think you have broken the code, they change the rules! After five inpatient stays at the VA Hospital in Salt Lake City, I thought I had things figured out. There are certainly parts of being hospitalized that don’t change, but the level of things for the bone marrow transplant here at the Seattle VA are ratcheted up a few notches with respect to keeping things über-sterile.  I’m now well into the process of killing my immune system off to make way for the new one, courtesy of “Hans,” my mystery donor. This is Spring Cleaning taken to a whole new level!

And to take Spring Fever to a whole new level, I settled into the new digs in the room at the end of the hall of the Bone Marrow Transplant Unit (MTU).  It has a lovely view and I don’t even have to walk to the window to see where I’d really rather be. My son and I had a quick intro to some rules of the road from the night nurse and he was off…I was not. I’ll be here for 3-4 weeks while I get my chemo and the life-saving transplant.

With that in mind, I set out to start learning the new slate of names of the medical and support staff that make up the MTU and to be sure, I want them to remember me. In the time prior to being admitted, I found a souvenir shop downtown Seattle with a metal sign that was intended for a bar that read name your poison. Being one to be literal when it suits me, I bought the sign, wrote Busulfan on the sign, and hung it on my door. Keeping things light!  I have a few other smaller things for the upcoming days. I’m intent on keeping people smiling so that when I feel lousy, they'll get me smiling again.

With my sign on the left and my new fancy dancing partner flashing her toxic chemical goodness for all to see. I'll bet you're *so* jealous! ;-)

Late in the day yesterday, I thought we might be getting close to one of those points where I’d need a little help smiling. PICC lines have been the point of infusion and blood draws for the past six months, the most recent of which was installed about 2½ months ago. Sometimes, these catheters migrate a little and can be difficult to draw blood from.  Such was the case yesterday, so after some contortions to see if the we could get a blood return and half a dozen unsuccessful sticks into my skin (peripherals), I ended up having to get a new line installed. While it’s not as painful as a biopsy, neither is it painless. Essentially, a narrow tube about 16” long is routed through a vein in my arm up to a junction just above my heart near the superior vena cava. To get to a vein big enough to support that catheter, the nurse has to use an ultrasound and get rather deep into my arm. It’s semi-surgical. I stay awake for the whole thing and get a local injection of Lidocaine. When I found out I’d be getting a new PICC line installed, I was less than happy. This is actually my fifth. One of the nurses who had been trying (in vein?!)  to draw blood earlier was watching the procedure and was actually rather quick to offer me something for pain. I’m tired of hurting, so I accepted. I actually have developed a rather high threshold of pain, but after this long, I’m ready to adopt better life through chemistry as my motto until this odyssey is over.

This is a PICC catheter going in and yes, that's me. The keyboard to your left goes to an ultrasound machine that helps the nurse/IV technician find the best vein. Inside the central line catheter, there is a little metallic piece that is picked up by the gray yoke/magnetometer on my chest so the exact location can be determined. After he positions the PICC, I get an X-Ray to confirm it is in the right place and they put a sterile dressing on the insertion sight. You can see the line going in my arm through a small incision.

Thankfully, the pain passes in a day or so and I get back to my normal jovial self. Even my favorite Brooklyn-born nurse told me I that I looked good today. I’m feeling good…for now. I know everything could change on a dime, so I’m doing what I can to enjoy the moment – carpe momentum! – or something like that anyway. By the time the late afternoon arrived, it was just the two nurses and me – from a pretty noisy day to a quiet ward. Suffice it to say, with no other inpatients, the nurses and I struck up a good conversation until sleep finally caught me.  I don’t know if it was the pre-meds, nerves, or something I ate, but I was back to my old hospital habit of staring at the ceiling in the wee hours of the morning.  Last night though, I was out cold.

I started chemo yesterday morning at 0-dark 15. It had to be started with near military precision so that blood levels could be measured at prescribed intervals. That tells the pharmacist how to adjust the dosage – something called pharmacokinetics. Say that 3 times fast! Since it’s impossible to reverse, I’m strapping in and holding on for the rough ride ahead. The transplant itself is less than a week away…hard to imagine that in six days, I’ll begin the process of coming alive.  So many parallels could be drawn at this point, but I’ll hold back until I actually have the new stem cells coursing through my veins.

Certainly, there will be much to think about as my body starts succumbing to the toxic chemical goodness and I take a nose dive back into frailty. There will be a lot as well to build up on the recovery side. I took a tour of the all new Salt Lake City Public Safety Building just before I left for Seattle and I saw the particular members of the structure that made it capable of withstanding an earthquake. Much like that, I know that my own body will resemble that in a way. It may appear similar on the outside, but perhaps a bit different than I can conceive; and I know the rebuilding will be good as well as necessary and it will belie the inner strength that comes from a visit with death. You can’t not be changed when you stare death in the face, but neither should one be cavalier about it. The stakes are just too high and they are permanent. It’s gonna hurt and it’s gonna suck, but the cost of life doesn’t have a price tag. Time to embrace the pain; time to embrace the suck (see note below)

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

Music for the day from the Goo Goo Dolls - Better Days

And you ask me what I want this year
And I try to make this kind and clear
Just a chance that maybe we'll find better days
Cuz I don't need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

And it's someplace simple where we could live
And something only you can give
And thats faith and trust and peace while we're alive
And the one poor child that saved this world
And there's 10 million more who probably could
If we all just stopped and said a prayer for them

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again
Cuz tonight's the night the world begins again

"Embrace the suck" is actually a military term meaning: the situation is bad, but deal with it.

 

Point of No Return

Up until my meeting with one of the doctors at the Seattle VA Hospital yesterday, cancer was pretty much an academic exercise for me. Obviously, I took it serious enough to subject myself to some pretty nasty and less-than-pleasant procedures and pharmacological fun, but the severity of something that could actually kill me in the space of a few months? Nah, I never get sick. And I mean never, much to the annoyance of those around me. I didn’t need medication with the exception of an aspirin on rare occasion and until last year, I had never set foot inside a hospital except to visit or take one of my boys to the ER for a trampoline mishap (side note:  if it looks too fun to be safe, it probably is. Both boys got broken legs from a trampoline).

That all changed yesterday.



When the first sentence has the words you, diagnosed, fatal, the rest of it ain't gonna be an easy read. Breathe deep, grasshoppa.

The good doctor reiterated the protocol for the bone marrow transplant and gave me more paperwork to review and sign. This is in addition to the stack of papers I signed on Monday, which apparently only consented for participation in the Graft Versus Host (GVH) drug they’re developing and another academic study that is pretty much statistical. I feel like I’m at the closing on a house with the amount of small print I’m reading. There’s apparently a board that reviews the language to make sure it’s not too terribly academic, but you can’t dumb down words like cyclophosphamide. Much to my amazement, my spell check recognizes that!  Go figure.

He gave me a sheet that has the road map of my transplant for the time I’ll be inpatient.  If everything works according to plan, I’ll be coming in Tuesday for some premed dose of Phentoin, an anti-seizure drug. Seizure is a side effect of the type of chemo I’ll be taking. I’ll also be getting Allopurinol which is usually administered to treat gout, but in this case, it also protects my kidneys from the chemo. Finally, I’ll be getting a sulfamethoxazole-trimethoprim antibiotic cocktail. My rule, as of late, has been that if I can’t pronounce an ingredient on the back of a food label, I shouldn’t be eating it, but I’m getting good at these drug names. I guess I need to refine the rule a bit. On Wednesday, I will be admitted as an inpatient for more toxic chemical goodness that will officially be the point of no return. If I were to stop treatment at this stage, it would be fatal for me. If something were to happen to the donor at this point, I would die without another donor, period.

August 14 is Transplant minus 7 days. T-7 will be the beginning of four days of Busulfan and then on T-3 days, I start another chemo drug called Cyclophosphamide and the GVH test drug for a couple of days and I finish up on antibiotics and anti-seizure meds.

Then I get a day of rest.

All during this time my blood production capabilities are essentially being destroyed by the chemo, so I’ll be getting transfusions of red blood cells and platelets I will have absolutely no immune system and I will be feeling very, very ill. The drugs will attack all the fast growing cells which will include the obvious places like my hair, but it also gets my mucous lining throughout my GI track and that will make it all but impossible to eat, so I can anticipate getting my Nutri-fun through my PICC line. I’ve heard that people often can taste things when getting infused and I find myself often smelling something when my line is flushed with saline. Let me just say I’m putting in my order for crab cakes Benedict for breakfast and perhaps a filet mignon Oskar for dinner.  I figure if I’m going to feel like crap, my food should make up for it, right? A guy can dream a bit, right?  I’ll also get one of those insta-morphine buttons to stave off the really bad stuff.

Following the transplant infusion, I’ll be getting Methotrexate, another kind of chemo as well as an anti-fungal Voriconazole, and an anti-viral Acyclovir. During the next couple of weeks, the transplant cells will start to engraft into my marrow and at some point my new immune system kicks in. The other thing that the new stem cells do, as it was described to me, is go to the injury first. In this case, they go to the damaged mucous membranes in my GI track and I start to actually feel better and can eat again. Following closely behind that, the stem cells wake up in my marrow and the white blood cells that fight infection (neutrophils) start coming on line and doing their job. About 11-14 days after the transplant, I get discharged and begin the recovery process.

I’ll be going in for close monitoring regularly until the GVH is under control, I’ve recovered sufficiently, and am strong enough to have my follow-up care managed by the VA in Salt Lake City. GVH affects nearly every transplant patient and even though I may be getting a drug to stave that off, it will be something I have to manage carefully for a few years out and be cognizant of for the rest of my life.

Having that rather graphic picture painted for me, complete with real graphs on the white board, was informative, but a bit tough to take in, considering the details were painted out rather vividly for me including all the side effects, which included the words fatal, catastrophic, and death more than a few times. 

Reading these things in my consent packet was even more difficult. It’s not like I didn’t know that kind of thing was possible, but seeing it in black and white and me signing this stack of papers was hard. It made that academic exercise something real and in a few days it will be tangible. It will be happening. It will be the point of no return.

And even if there is no turning back and it’s going to be a taste of hell, it isn’t Dante’s Inferno. I don’t see a sign that says, “Abandon all hope, ye who enter here.” If anything, seeing such finality in signing these forms, I found myself mildly annoyed if not a bit in shock.  It’s tough to take in, it’s scary, and dammit, I have too much yet to do to be dealing with the business of dying.

So, screw the statistics and let’s beat this. I’m committed…no turning back. You with me?

 

I had tossed a few frogskins to a friend of mine from my writers' group in Minnesota who is participating in the Relay for Life for the American Cancer Society. I didn't give much thought to it afterward, but as the event was today, she did this for me. I've always been the guy raising money for others...being on the other side of the coin is humbling, but I so appreciate her thoughtfulness. Thanks, Malyssa!

 

Be well, please be strong for me, and again, much love to you all.

Today’s music is of course from Kansas, Point of Know Return (not a typo)

I heard the men saying something
The captains tell they pay you well
And they say they need sailing men to
Show the way, and leave today
Was it you that said, "How long, how long?"

They say the sea turns so dark that
You know it's time, you see the sign
They say the point demons guard is
An ocean grave, for all the brave,
Was it you that said, "How long, how long,
How long to the point of know return?"

Your father, he said he needs you
Your mother, she says she loves you
Your brothers, they echo your words:
"How far to the point of know return?"
"Well, how long?"

Today I found a message floating
In the sea from you to me
It said that when you could see it
You cried with fear, the Point was near
Was it you that said, "How long, how long
To the Point of Know Return?" 

Drill, Baby, Drill!

Three times a week since I’ve been cut loose from the VA Hospital, my blood counts and chemistry have been monitored very closely. I’m now intimately familiar with WBC, RBC, HGB, HCT, PLT, ANC, and some other fun medical terms and drugs that I wish I didn’t know anything about. Since I have a central catheter (PICC) installed, getting a blood draw or an infusion of chemo, blood, or platelets are essentially painless procedures. They’re just time consuming. That became more of an issue as the weather got warmer and I became restless with being confined to the hospital. I got more of a case of cabin fever than anything else!

With a 28-day chemo cycle, my body's response was pretty predictable. That was the drill.

And then the call from Seattle came telling me that a bone marrow donor had been found and the routine changed. To be prepared for this new chapter, a bone marrow biopsy was required to ensure that I’m still in remission. I’ve had a lot of procedures, tests, pokes, and prods since this all began and honestly it hasn’t been bad.  More often than not, it’s a series of inconvenient truths that landed me in a hospital room and only when it became a cumulative thing did it really become what I would call bad. I would get something that, on a scale of 1 to 10, was a nominal 1 or 2, but when added to other 1s or 2s, it got worse and at some point, the group of small things overflowed and I would have my own personal meltdown.  A blood draw is not fun, but it’s barely a 1.  A headache is a 1.  Getting a PICC line installed is a solid 3, but those are really minor in the grand scheme of things because they pass rather quickly.  And let’s face it, a headache passes within 20 or 30 minutes after taking a pain reliever, so you can see that it hasn’t been too terribly onerous.

But there is one procedure I’ve had to undergo that has actually been pretty durned painful – the bone marrow biopsy.  There’s no getting around it – it hurts like a bear and makes you want to cuss like a sailor, but there’s no other way to test the marrow for cancer, so it’s a necessary thing.  Let me tell you how that works. The only way to get to the marrow is to get through the bone, of course. The site of choice is the pelvis and it’s closest to the skin in the small of the back.  If you reach behind you just above the waist line of your pants about 3” to either side of your spine, you’ll feel that special place where all the magic happens.

The nurse with that great combination of a smile and sympathetic look will introduce herself and bring in a cart full of goodies that would make Santa jealous. Then comes the doctor, replete with euphemisms and a packet covered in sterile white plastic with implements of torture that would make Torquemada jealous.  Remember, no one plans for the Spanish Inquisition, but they do schedule you for biopsies! This was my fourth…I know the drill, pun intended. The smiling doctor and the sympathetic smiling nurse then explain the procedure in a way that would sound no more unpleasant than a telemarketer calling during dinner (aka ‘pain in the ass’). Oh, the lies…they’re good at it with all the practice…and they smile all the while! I remember seeing a guy across the hall getting the briefing about a biopsy and I wanted to shout out to him, “It’s gonna hurt, get the drugs!” But the nurse closed the door. I never saw him again (insert frowny face here). Sure, it was because his procedure was done before mine and I was given some oral drugs for my chemo in my spinal cord, but we’re splitting hairs here!

Since this was my fourth biopsy, I asked the good doctor to spare me the euphemisms and move straight to me signing the release. I smiled and was polite about it of course.  I am a decent and polite guy, if not sporting a lively sense of humor with a touch of brashness at times, but hey, I know Santa Claus isn’t real and I know this is gonna hurt...bad.

Let the games begin!

So, I take my shoes off and hike my shorts down a bit and the good doctor starts to give me a sterilizing sponge bath on my back side. Isopropyl 2013? Open that puppy and let’s have a whiff of that lovely cork! Lovely bouquet with oaky undertones. Whine spectator gives it a 91! How many of you can say you’ve had that one, hmmm? It’s nothing special—it’s cold and you know you’ll have a questionable stain later. Yeah, it’s from the iodine, but people are just so suspicious! Alas, I digress.

Let the euphemisms flow effortlessly off the tongue!

“So, here’s that little bee sting” (translation – I’m giving you a shot to numb your back side so I can really hurt you). So, I feel the needle and the lidocaine expanding under my skin. My heart races a bit because I know what’s next.  At this point, she makes a small incision down to my pelvis, which I don’t really feel too much, but there’s some "pressure."  She tells me she’s numbing the bone, which I think is not something that is really possible, but it sounds good, doesn’t it? At this point, things take an ugly turn and I’m having flashbacks to Westerns where they give the cowboy with an imbedded bullet that needs to come out; and our unfortunate hero needs something to chew on.  In my case, I buried my face into the pillow and tried to grab on to something. For a lovely petite Asian gal, the doctor can wield an auger! I’ll be her forearms are shredded! Those white coats hide a lot, I’m sure. She takes a hand drill and pushes it into my pelvis and damn, it hurts.



For a petite lady, she sure could put some serious power behind that auger.  "And now, you'll feel some pressure."  Ya think? So, she drills through the pelvis and gets into the marrow. Where's that leather strap to chew on when you really need it?

Drill, baby, drill!

Once the drill has gone into the inside of the bone, she withdraws the bone core and draws out the marrow. Sucking that out also hurts like hell. She then withdraws the auger and puts a rather large Band-Aid on the wound and I’m done. She has me lay on my back for about half an hour and then I walk away. It takes all of about 15 minutes start to finish and I’m left with a dull throb.  My pain level spiked at a solid 6 or 7, but now as I walk out, it’s barely a 1…and I’m feeling a bit shaky. The nurse with the sympathetic look? Well, she's really looking the part now and the doctor has said, "sorry" about 8 times. She knows she hurt me.

You can see the doctor pulling out the aspirate marrow.  Lovely, huh?

I have a pretty high threshold of pain and I realize this is something I need to have done since AML is a disorder focusing on marrow and I of course, am getting a marrow transplant, but there has to be a way to alleviate the pain more than popping a couple of pills.  It’s not important that I’m awake for the procedure even. Alas I digress once again and I am not, by nature, a complainer or whiner and I don’t even take aspirin unless I have a helluva headache…but come on! I have a PICC line in my arm.  Would it hurt to put something to take the edge off in that little line?

Ah well, what doesn’t kill you makes you stronger, right? I guess I should be getting pretty strong.

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

Today's music - Broken by Lifehouse

 

The broken clock is a comfort
It helps me sleep tonight
Maybe it can start tomorrow
From stealing all my time

And I am here still waiting
Though I still have my doubts
I am damaged at best
Like you've already figured out

I'm falling apart
I'm barley breathing
With a broken heart
That's still beating

In the pain
There is healing
In your name
I find meaning

So I'm holding on
I'm holding on
I'm holding on
I'm barely holding on to you

The broken locks were a warning
You got inside my head
I tried my best to be guarded
I'm an open book instead

And I still see your reflection
Inside of my eyes
That are looking for purpose
They're still looking for life

I'm falling apart
I'm barely breathing
With a broken heart
That's still beating

In the pain(In the pain)
Is there healing?
In your name(In your name)
I find meaning

So I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you

I'm hanging on another day
Just to see what you will throw my way
And I'm hanging on to the words you say
You said that I will be okay

Broken lights on the freeway
Left me here alone
I may have lost my way now
I haven't forgotten my way home

I'm falling apart
I'm barely breathing
With a broken heart
That's still beating

In the pain(In the pain)
There is healing
In your name(In your name)
I find meaning

So I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you

I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you

 

Passive-Aggressive

When I got my diagnosis, I felt like I was in that scene from Mel Brooks’s High Anxiety where he’s falling, spinning, screaming. Meanwhile, back in the sterile room, I was speechless, listening to the two hematologists from the Huntsman Cancer Institute explain to me the pathologist’s report and insisting I drop everything and get admitted into the VA Hospital right away. My life was about to start spinning out of control – specifically, my control – for quite some time. And the kicker was, no one really knows how long that period of time is.

“What would you do if this were your son,” my mom asked. The doctor said without any inflection, “Admit him and treat aggressively with chemotherapy immediately.”

Did he really say immediately? Why, yes he did. He repeated the pathologist’s finding that 50% of my bone marrow had some nastiness, something called monoblasts or promonocytes that shouldn’t be there. They should be maturing into full-fledged blood cells, but for some reason, they’re not. And that reason, crime-stoppers, is acute myeloid leukemia and he pretty much laid out the stunningly good news that if I did nothing, I’d be pushin’ up daisies in about 90 days. Be sure to invite this guy to your next party!

That night, I began the odyssey. I remember closing my eyes in the claustrophobic confines of the MRI tube mulling over the new reality that something inside of me that I couldn’t feel, see, taste, hear, or smell was trying to kill me. No sci-fi monster waiting to jump out of my chest, no parasite from an exotic destination vacation, no comeuppance from a life of self-abuse, just an anti-climactic lab report with some really bad numbers. Throughout that hour of solitary confinement, broken up by unpleasantly loud clicks, bangs, and weird noises, I realized that I didn’t even know the questions to ask. The only thing that went through my mind was, “What’s going to happen to me next?” Maybe that was a good thing as I broke the news to my immediate family because I didn't know the answers to the questions they had and I wouldn't have to prolong this awkward and quite frankly very disturbing conversation punctuated by gasps and pregnant pauses. In reality, what came next essentially was getting smart about what this leukemia thing is and what I can do (and not from the Internet which takes you from a commonplace symptom to death in about three easy clicks!). 

During my first week in the hospital, one of the hematologists came in and asked, “How are you doing today?” Trying to be friendy, I jokingly tossed back, “Well, I don’t know, you tell me!” The discussion that followed really drove the point home that he wanted my input, my involvement. He wanted to know the details from my vantage. It was in that moment, I realized that more than my positive attitude, I needed to really be engaged with my own treatment, not just cognizant of what was happening. Paying attention to what the doctors were prescribing, what the nurses were doing procedurally, and how my body was responding and feeling all became vital to my healing process.

I’ve stopped things from happening that weren’t OK, refused unnecessary medication, or prevented additional procedures that caused extra unpleasantries from being inflicted just by paying attention and asking questions. No doctor or nurse has yet to be offended. From what I’ve seen, they’ve used them as teaching points for me and it reinforces that I’m in good hands.  If they don’t know the answer, they’ve stopped what they’re doing and gotten the answer from someone else, but in the end, I’m still being taken care of very well. The bottom line is you know your body and what ‘normal’ should feel like. When you’re under the care of a medical professional, it’s important to communicate in a way that you both understand what’s happening and the nature of the discomfort or feeling you have that’s not quite right.  Here are some examples of things I brought up.



• My blood sugar showed an alarmingly high reading (>500) when it was normal every other day. I noted that during my first round of chemo, I was given a constant drip of something called D5-half (the “D” stands for dextrose, a form of sugar). This was given at the same time as the chemo drug. While an inpatient, I had my blood drawn every morning for something called CBC (where the types of cells are quantified, essentially) and chemistry. The blood is drawn through my PICC line – the same line where I get the IV and chemo.  If those other drips aren’t stopped, guess what gets mixed with the blood? A couple of days’ lab tests were skewed as a result and I had my fingers unnecessarily pricked on the hour to test my blood sugar, all readings being normal. My questioning the procedure stopped the finger pricking.
• I was beginning a session of chemo one morning and when the nurse flushed my PICC line, I could hear it in my ears, which was very odd. When the pump started, I could feel it in my chest, something in the many IV pushes I had never happen, so I stopped things right there. It wasn't uncomfortable, but it wasn't right. A quick trip to X-Ray showed the PICC line had diverted away from my heart and into my jugular vein.
• After three rounds of chemo, my body is pretty consistent in the way it responds. For example, at about day 10, my neutrophil count starts to plummet and by day 12, I’m in a neutropenic condition, meaning my immune system is pretty compromised and I have to take certain precautions. During my first round of chemo, I asked for prophylactic drugs to keep me from coming back through the Emergency Room. The hem/onc fellow at the time called me every day following my lab tests to let me know what my counts were and when to start taking the antibiotics / anti-virals. It worked great; the second round, not so much. I didn’t get the calls from the hem/onc that had rotated in and I ended up with a neutropenic fever that got me admitted for a lovely 4 days. Lesson learned: just take the meds when you know the numbers will tank. The new hem/onc fellow who rotated in agreed with me…and I’m doing very well even though as of yesterday my neutrophil count was a big goose-egg! No fever, feeling great!





This was right after the nurse had
exerted some serious pressure on
the hand.  You can see the beginnings
of what looks like a bruise.

• 

  

  Thankfully, it doesn't hurt as the
  nurse said it would. Just a little
  discoloration.

  This Monday, I asked to get a blood type and screen because on day 14 of the chemo cycle my platelet count falls to the floor and without sufficient platelets, you have this nasty tendency to bleed. My request was politely declined and as I was driving home, I got a call from the physician’s assistant I’ve been working with to come back for a – yes, you guessed it – blood type and screen because I’m critically low on platelets (4k/μL – normal is 150k-450k/μL). So, as instructed, I went to the lab to get it drawn. The lab folks are pretty damned good at what they do and have a way of keeping the needles from hurting.  I don’t know how they do it, but they do! The first stick didn’t work. My vein collapsed around the needle apparently. The second stick went in my left hand and he was able to get the sample. On my way home, I felt an itch in that hand and looked down and saw the top of my hand where the sample was drawn swollen about the size of a golf ball. It was really quite amazing. So, at the very place I had taken a U-turn to go back the first time, I made yet another U-turn and went back to the ward and asked, “Is this serious or will it go down by itself?” The nurse’s gasp said it all.  She escorted me to a chair rather quickly and put all her weight on the hand to stop the bleeding. I won’t say, “I told you so, but…” Here are some before and after pictures. I had the presence of mind to come back to the hospital, but I didn’t get a chance to take a picture of the swollen hand.

My point in these examples is not to accuse anyone. We all make mistakes and none of these are really serious even though it did cause me some discomfort and inconvenience. It just drives the point home that regardless of how small the procedure, no matter how trivial the detail, I have to pay attention and if I don’t understand something, I should ask.  I have to manage my care because it’s my body and it’s my life; and I’m responsible for it and I have others available if I'm not coherent to do the same for me. I trust the doctors and nurses to do their job of course, but I have to work with them to fully bring about my healing.

Note that I use the word healing rather than treatment. That’s because I see this whole adventure as more than something happening to me.  It’s beyond restoration to a previous state.  We’ll get there, of course, but the medical aspect of cancer treatment is only part of the big picture. And that’s where my involvement, as the patient, is critical.

You see, this isn’t happening to me although technically that is the case.  Something this big is transformational and it requires participation, my participation. I can’t be passive, but with the same urgency that the doctor who sat across from me insisting I be admitted that night, I have to be aggressive in my own healing.

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

Today’s music – Fix You by Coldplay

When you try your best but you don't succeed
When you get what you want but not what you need
When you feel so tired but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I

Tears stream down your face
I promise you I will learn from my mistakes
Tears stream down your face
And I

Lights will guide you home
And ignite your bones
And I will try to fix you

I'm the Guy

"Ultimately, it’s up to you, Mr. Park.” The doctor was looking at me with a cross of expressions – one that was sympathetic and the other of impatience.  As much as I wanted to leave the shrinking four walls of the hospital, leave the pain of the endless missed sticks into my shrinking veins, and of course my shrinking patience, I’m no doctor and the reason I came to the emergency room Thursday morning was in compliance with my discharge orders and there were dire precedents for doing anything less than what I did.

Flash back just 24 hours, one of the more senior hem/onc doctors and I had resolved what had been a rather terse exchange from the previous day. He was of the opinion that I should remain in the hospital until my neutrophil count exceeded 500; the medicine team stood by their opinion that 48 hours without a fever or positive blood cultures while treating with broad-spectrum antibiotics was sufficient. I felt like  I was backed into a corner where my decision would pit one group against the other and when I added the pain of having yet another IV blow out and the nurse missing on reinserting a new IV needle, I was at the edge of tears again. I'm a tough stick right now and I know that, but any way you slice and dice this one, a needle stick just plain hurts. I wouldn’t leave against medical advice, so I told the doctors to work it out and present me with their combined counsel and I would go with it…and the doctor gave me exactly that and still made me choose what to do.

This has become more and more what cancer has done
to me...or for me. I'm responsible...I'm the guy.

I elected to go home.

At home, I had oral antibiotics, antivirals, and antifungals; and I would be clear of coughing orderlies and hallways of sick people; and I would be free from the needle sticks! It was my call. I’m the guy who is ultimately responsible for my own treatment.

On Wednesday, I met with the assistant to the hem/onc who has been overseeing my care since diagnosis. My white count was in the normal zone and she was happy with my recovery.  She pointed out that one of the aptitude tests that indicated my suitability for transplant had to do with waking time out of the bed; 0 with the most, 5 the least. Even at age 50, I’m still among her younger patients and she confirmed that being physically active was a major factor in leaving the hospital as quickly as I have. Having gone through three rounds of chemotherapy, my immune system has reacted with some regularity, so working directly with the physician’s assistant today, we were able to come to agreement on when to start the oral drugs at home and prevent another unplanned visit to the ER. Once again, I’m the guy. I’m responsible. It was because of taking charge that I had preventive drugs at home after my first consolidation round of chemotherapy. I asked about it and within an hour, I had a sack full of big, white horse pills with a foul aftertaste.

It’s far too easy to relinquish the many decisions to someone else who is the expert, but when push comes to shove, it’s my body. I have no desire to go through years of medical training, but I absolutely want to understand what’s happening to me in terms that I can understand. When the doctor in the sterile white coat told me I had leukemia, my mind couldn’t process that pronouncement other than, “this is bad” and it had something to do with white blood cells.  Since then, I’ve read a lot from books people have given or referred to me, looked at a lot of Internet research, and asked a whole lot of questions of nurses, doctors, survivors, and other subject matter experts. Without a doubt, it is the firehose method of learning.  Then again, when it’s happening to you, that otherwise impossibly steep learning curve becomes scalable and even the complicated words become relevant and their pronunciation is now possible.

Now, when a doctor tells me he’s prescribing a medication of any kind for me, I ask the name of it and what it does as well as the side effects. On the same note, I tell the doctors everything. We discuss what’s going on because I’m the guy. I won’t tell them how to do their job, but I’m ultimately responsible for my well-being, so if there's any input, I'm going to make it and I have to be willing to make decisions as well. Part of that responsibility is communicating to others my expectations. The major bone of contention I had with the doctor with whom I had a bit of a row was a lack of communication. I had not been told that my blood counts had fallen to the point I needed to be taking the medications I was prescribed. Had I known, it’s very likely my visit to the ER and all the other unpleasantness that went with it would have been totally unnecessary. I can’t say that with all certainty because I’m not a doctor, but during the previous cycle when I had a call each day after my labs were processed, I knew when to start the antibiotics, so I had many, many medically boring days-a good thing! Today, I received one such call to tell me my blood counts were in the normal range. It took less than a minute and while no catastrophe was averted this time, I was comfortable knowing that I was OK all around. It definitely takes some pro-active involvement and from everything I’ve been told, no one minds the questions.

That’s also why I am bent on physical therapy at least three times a week. I want to be in the best possible shape when it comes time for my transplant. There’s no secret it will be an extremely demanding procedure, so I need to be strong. I’ve been pretty vocal about being upbeat and positive because everything I’ve read and heard tells me that attitude plays a very important role in how well and how quickly our body responds in healing as well. I have to do whatever I can to get strong and stay there, mentally and physically.

This cycle is coming to a close and I go back in for round 3 of consolidation chemotherapy on Monday. I was feeling too good and enjoying the sunshine too much to have this fantasy last too long! This entire round has been rough. It was a painful inpatient stay and I felt like I had some emotionally taxing days in between, notwithstanding this latest visit to the ER and being admitted afterward. It was filled with a lot of life lessons in the meantime, many of which I’d really rather not learn…or re-learn. I have one of those passive-aggressive streaks and I have a way of shutting down when emotions engage. Unfortunately, cancer has been chipping away at that too. What kind of unhealthy coping mechanism am I going to be able to resort to if those are gone? Nothing about this is fair, is it? Ah well, I am the guy and I am responsible, after all. Gotta stand up and face it head on.

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

Music for the day is Stand by Rascal Flatts

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you've lost your fight
But you'll be alright, you'll be alright

‘Cause when push comes to shove
You taste what you're made of
You might bend ‘til you break
‘Cause it's all you can take

On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, then you stand

Life's like a novel with the end ripped out
The edge of a canyon with only one way down
Take what you're given before it's gone
And start holdin' on, keep holdin' on

‘Cause when push comes to shove
You taste what you're made of
You might bend ‘til you break
‘Cause it's all you can take

On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, yeah, then you stand

Every time you get up
And get back in the race
One more small piece of you
Starts to fall into place, yeah

‘Cause when push comes to shove
You taste what you're made of
You might bend ‘til you break
‘Cause it's all you can take