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

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