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

Be Prepared

During one of my outpatient IV sessions, I was the only one in the room and in a weak moment, turned on the TV. I tuned into the National Geographic channel and rather than the stunning cinematography and nature programming I was expecting, I was met with a program featuring some survivalists and their compounds. I won’t go off on a tangent about television programming, but it reminded me that there’s a whole industry out there catering to those who are planning on “the big one.” Now, that “big one” could be the earthquake that is supposed to level the city where I call home, it could be something downright apocalyptic, or just a few of these fringe survivalists National Geographic featured who want to live off the grid.

I sure didn’t anticipate meeting “the big one” of catastrophic illnesses, but to be sure, there are a number of interdependent industries catering to this particular “big one,” yet it’s more reactive than preventive – that is to say there is a huge nutritional supplement industry on the preventive side and a reactive health care system. No one really prepares to have a catastrophic illness befall them. Well, I thought that was true until Angelina Jolie pre-emptively had a radical double mastectomy to reduce her risk of developing breast cancer. Some cancers tend to be hereditary while others like mine, as I’ve been told, are just arbitrary blind dumb luck. It defies me how some people can live reckless lives, abusing their bodies with all manner of chemicals without consequence while others are borderline obsessive and end up with a debilitating illness. Yet, that is the way [fill in your favorite aphorism here].

I have been pretty conscientious since entering what we euphemistically call “middle age” about my health. I’ve made changes in my diet and lifestyle, exercised regularly, and even thought to myself every time I check out at the grocery store seeing the headlines on the health magazines, “Yeah, I do that…I’m good.” In fact the night I was ushered into the elite leukemia club, I was on my way to the gym, bag packed in my trunk. I wasn’t sporting the coveted six-pack abs, but just a few months prior, I was riding 500+ miles down the California coast on my bicycle. I was in pretty decent shape for a 50-year old grandfather.

What I lacked in that chiseled muscle, I had in stamina and ironically, as it turns out, having held on to the body fat that I have been valiantly trying to exorcise through exercise has actually turned out to be a benefit, both in terms of being able to lose weight from chemo and in the many subcutaneous injections. Whoda thunk? Well, my primary care physician did say to me, “The jury’s still out as to whether it’s good to carry a few extra pounds.” I like this guy. He not took the time to actually listen to me about turning 50, but he was persistent with his suspicions and was the one responsible for finding the leukemia. That certainly works for me. Say what you will about the VA Health Care System, but I think it’s awesome.

Still, I hadn’t prepared to be sick. Again, who does?

Having been through what I have, I will tell you that being healthy has made all the difference on how fast my body has responded to treatment, healed when something went wrong, and is now rebounding now on the downside of transplant. Some of it has to do with heredity, to be sure. I’ve been blessed with some pretty good genes, but it wasn’t obviously enough to ward cancer off completely and I have some battling with this thing yet, but I hope it makes sense to say you can be quite sick with an illness and yet be healthy just as it is to not be sick yet unhealthy. For example, I may be battling cancer and have some challenges with blood chemistry or limitations with strength, but I will exercise and eat watch what I eat and be otherwise just as healthy as before.

This is the cover of the April 1, 2013 of Time magazine. I read through the article while at the hospital in Salt Lake City. One of the poignant things I walked away with is that 1 in every 2 men and 1 in every 3 women will be impacted by cancer in their lifetimes. If those numbers aren't compelling enough to take whatever pre-emptive action about your health, I don't know what numbers will persuade you.  Far from being fatalistic about it, use it as ammunition to be healthy.

Some of the habits that got me in decent shape prior to my diagnosis will be hard to forego because the intent of the habits are to take care and improve myself. The adage of ‘no pain, no gain’ could set me back, so the new mantra is now ‘listen to your body’ to find out the safe limitations and I have to add in the numbers from my daily blood chemistry and counts and medical advice. But the impetus behind the habits will produce new ones that keep the healing moving along.

I wanted to talk about this because simply taking care of myself through a reasonable diet, regular exercise, and a good attitude have made a bad situation bearable and allowed for a much more rapid healing than otherwise. From my standpoint, it’s purely anecdotal, but there is empirical evidence to support my assertion that I’ve read in the past few months. I’ve been around a lot of other cancer patients and the number of people who don’t take care of themselves take so much longer to respond to treatment and heal, it’s worth mentioning. Moreover, these people are much nicer to be around, which makes it a really cool thing to have the nurses jockeying over who gets to take care of you because of your attitude!

Bottom line: whether you actually ever meet “the big one” you’ll be healthier and you’ll be happier. Seriously.

Music for the day from Rascal Flatts – My Wish

hhBottom of Form

I hope the days come easy and the moments pass slow
And each road leads you where you want to go
And if you're faced with the choice and you have to choose
I hope you choose the one that means the most to you

And if one door opens to another door closed
I hope you keep on walkin' til you find the window
If it's cold outside, show the world the warmth of your smile
But more than anything, more than anythin

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small

You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish

I hope you never look back but you never forget
All the ones who love you and the place you left
I hope you always forgive and you never regret
And you help somebody every chance you get

Oh, you'd find God's grace in every mistake
And always give more than you take
But more than anything, yeah more than anything

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish, yeah yeah

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish
(My wish for you)

This is my wish
(My wish for you)
I hope you know somebody loves you
(My wish for you)
May all your dreams stay big
(My wish for you)

One Foot Off The Ledge

I still want to do something a bit lighter after some rather heavy emotional weeks, but after my last posting on my reaction to the bronchoscopy, I felt I the need to close that loop. I don’t think I’ve ever had such a strong involuntary emotional response to anything in my life so many times, especially in such short order.

I've found leukemia to be nothing short of an emotional roller coaster. One day, I’m hurling in one of those little green tubs for all to hear and then something magical happens and it feels like I’m sailing along, whooping it up with my hands above my head, bravado showing for all to see as we all go down the next hill on track. I still have my not-so-great-feeling-really tired days, but thankfully, the really nasty stuff is behind me.

I’m in an outpatient status, but I’m spending the better part of my day at the hospital being infused with an electrolytic cocktail of potassium, calcium, phosphorus, and magnesium each morning before my anti-viral Foscarnet. I get this drug instead of Gancyclovir which I had been able to get infused in the hotel because after prolonged use, it took my blood chemistry down. The Foscarnet is manufactured in England and imported here. Afterward I get another bag of saline to protect my kidneys, so I have an IV pole for a dancing partner for about 5 ½ hours a day. So, if everything moves along, I can get back on the road to the hotel around 1:30 or 2:00. It makes for long days...and this assumes I don't get other things like platelets, other blood products, or another infusion that my morning tests said I needed.

I'm being prepped for the procedure. The camera is about the width of a pencil and the images are projected on these screens. Of course, I don't remember a thing, but I'm sure it was captivating.  Mr. DeMille, this is NOT what I meant about a close-up!

As a side-note, I can't wait for my hair to grow back. You could use the reflection on my head as a mirror!







I'm sucking down some Lidocaine to numb my lungs in this pic. I had tried to be the funny guy and play with the nebulizer like a flute, but my photographer missed his Kodak Moment®.

It’s a routine, but there are no breaks and I still have the mother of all pill boxes and my med-induced high blood sugar I need to monitor. It’s not enough to simply say that I have to take a certain medication three times a day because there are interactions that prevent something quite that simple. so I may have to offset one pill by an hour or two or with/without a meal. It gets complicated. Blood sugar is treated like a type I diabetes with insulin and I have two different types I have to work with based on the time of day and the particular sugar level.  Everything is closely regulated by the MTU pharmacy. Maintaining proper blood chemistry truly is a 24/7 proposition right now. It’s tiring, often wearisome, but it’s life right now.

But I still don’t have to sleep in the hospital…and that’s a good thing.

 

Now, I did say I don't sleep at the hospital, BUT I guess this would be the exception.

Prednisone is one of the many medications I take. It’s a corticosteroid and also acts an immunosuppressant. I take these in rather high doses being a transplant patient. The big thing it does is ward off Graft Versus Host Disease (GVHD). I used to be at more than double the dose I am now, but in order for me to escape the Puget Sound VA Health Care System’s gravitational beam and return to my home in Utah, I have to be off of these bad boys. So, the next step in this Rube Goldberg contraption is to further taper off the steroids and to do that we have to make sure my lungs are able to handle the reduction in the dosage (GVHD will often attack the lungs, hence the reason for pulmonologists involved and the need for the bronchoscopy). You can see the delicate balancing act on which all this hinges, now, right? Putting it all together took some time for me, too.

That said, having four white-coated pulmonologists tell me on Thursday they wanted to do a bronchoscopy on Friday, for whatever reason, was not a welcome proposition. Just the word made me shake involuntarily because no matter what mental machinations I tried to invoke, all I could see in my mind’s eye was the day I was whisked away to the MICU after a room full of doctors and nurses put an oxygen mask over my face, pumped the thing that looked like a toilet float to make me breathe and sedated me. I awoke in a strange place with a machine breathing for me and every time I needed to cough, I felt like I was drowning. The bronchoscopy they did en route to the MICU had involved a drug that paralyzed me so I could hear and feel everything but do nothing. All I can tell you it was the most terrifying thing I have ever experienced and nothing any of these well-meaning doctors could say could lessen that memory. I was officially freaking out despite their assurances that this would only take an hour, that no paralytic drugs would be involved, that I would remember nothing, and that it was really no big deal.

I went home after my routine IVs were over on Thursday, only to be greeted by a phone call to confirm scheduling of the bronchoscopy for 1:00 p.m. Friday, November 1. I told them I would haunt their dreams forever if it wasn’t exactly the way they told me…after all, it was Halloween. Again, I was assured six ways to Sunday that this would be quick, painless, and over in less than an hour and I would *not* be getting any kind of paralytic drug. Nothing per oral after midnight except my meds as directed by my outpatient team. Adding insult to injury, yes, I was really hungry!

I slept most of the morning in the outpatient recliner while getting my daily IVs – partly out of emotional escape, partly because of my inability to sleep through the night anymore. Once it was my turn to see the doctors for routine rounds, they asked me how I was doing and the irony was just like the previous day, I had a lot of energy. Physically, I was doing well…emotionally, I was a wreck and I broke down shaking and unable to hold it together. Thankfully, they all knew what I’d been through and the medical team really holds us as a big family and truly are rather tender with us – especially the nurses of course.  The attending physician, Dr. Wu, is awesome anyway.  He’s the one of the three attendings that seems to actually give straight answers instead of hedging around. Since it was the first day of the month, the new fellow was part of rounds.  She was pretty responsive for not knowing me or my history, but pledged to make sure she would make this a non-event.  They gave me some Ativan about 30 minutes ahead of my shin-dig, which officially put me under the influence of a debilitating drug and I was now no longer qualified to drive my IV pole to the pulmonary suite, which is about 100’ from the MTU where we were. I got wheeled over like a proper cancer sicko.

The attending physician from the ICU came in the room with the doctor that was going to do the procedure and I told him I had one word for him:  “E-I-E-I-O”.  He laughed and said, “You really were awake for the last procedure. I admitted that I had a little help on the clue to “Old McDonald.”  He told me that if I could remember the song they sang during my procedure, he’d give me a $100 bill (and he showed me the Benjamin to prove it). I didn’t remember that part of it, but I was very much awake and paralyzed and told him so.  He was shocked to know that and was profusely apologetic along with the other pulmonary people who were involved.  He again assured me this would be less than an hour and there were absolutely no paralytic drugs involved.  So, for the next 15 minutes, the technicians and nurses gave me different kinds of drugs to numb up my lungs, throat, and vocal cords so I wouldn’t feel anything, letting me know what they were doing every step of the way. I can’t say that I knew when I succumbed to the anesthesia. I just know I woke up and they said I did fine. 

Suffice it to say, without the emergent situation and 20 some-odd white-coated individuals in the room, the level of trauma was nonexistent. The technicians were very calm the whole way through…and since I was already doped up, that didn’t hurt either.  The end of this is that I should find out if it’s some sort of pneumonia, infection, or something else probably on Wednesday. All of the possibilities end in the same:  if it’s anything, it will be treated with some sort of oral antibiotic.

In any event, the bottom line is I’m OK and not quite as traumatized as before…although I gotta tell ya I’ve not quite had that kind of emotional response in anything, ever. I’m not over the whole thing yet because it’s still linked to those two very bad trips to the MICU, but if I have to have another bronchoscopy and they take me through it like this past one, I’ll be OK with a little nurse’s helper ahead of time!

It all feels very arbitrary some days and very logical others. What I do know is that I know my strength is returning incrementally and I’m able to sleep a bit more rather than in fits and starts. I have some days where I feel really great and I still have my days where I’m just exhausted and I understand that’s just something I’m going to have to live with over time and learn to listen to my body to prevent going backward.

Moving onward and upward…be well, stay strong, and much love to you all.

Music today from Rob Thomas – “Little Wonders”

 

Let it go, let it roll right off your shoulder
Don’t you know the hardest part is over?
Let it in, let your clarity define you
In the end we will only just remember how it feels

Our lives are made in these small hours
These little wonders, these twists and turns of fate
Time falls away but these small hours
These small hours still remain

Let it slide, let your troubles fall behind you
Let it shine until you feel it all around you
And I don't mind if its me you need to turn to
Well get by, its the heart that really matters in the end

Our lives are made in these small hours
These little wonders, these twists and turns of fate
Time falls away but these small hours
These small hours still remain

All of my regret will wash away somehow
But I cannot forget the way I feel right now
In these small hours
These little wonders, these twists and turns of fate
Yeah, these twists and turns of fate!

Time falls away, yeah but these small hours
And these small hours still remain, yeah
Ooh they still remain
These little wonders, oh these twists and turns of fate

Time falls away but these small hours
These little wonders still remain

Brick to the Back of the Head

I had planned on today (Thursday, October 31) being a rather light writing day after having had a couple of rather heavy emotional weeks. And it seemed the stars were aligning for that to happen. I had spent Wednesday night just listening to the music I had selected for over the time I've been writing this blog and the Universe dealt me a really nice hand in the morning. It started out as a really great day. I slept better than I usually do, I awoke with a lot of energy and had a good breakfast before heading off to the hospital with my son. That proverbial spring was in my step! Even the nurses commented that I looked good. To top it off, since today wasn’t one of my regular clinic days, my time at the VA was spent getting the usual IVs, but again because it was a good day, one of the IVs has been replaced by an oral medication, so I actually had one less IV. Bonus!

Good days start with good beginnings!

And then…it all came crashing in.

Indeed!

I have been getting weekly PFTs (Pulmonary Fitness Tests) which gage how quickly and how deeply I can breathe. We do these for a couple of reasons. The first is to compare them against my intake tests and we're also doing them to taper off the high dose of steroids I'm taking. These tests take all of five minutes and I’m done.  The technician who conducts these tests told me that my tests have been virtually identical, but if you look really closely, the doctor pointed out that my results have been about 1% less by the week. That doesn’t sound like a lot and it really isn’t, but over time, yeah, it’s not a good thing, so the thing that got me shaking was when a group of white-coated pulmonologists marched into the outpatient room and pronounced that they wanted to do a bronchoscopy (pictures will be forthcoming if I can coerce someone or at least guilt someone as long as no faces are in the pictures...except maybe my bloated one).

Let's hope my lungs look a lot like this tomorrow!

Let’s move back in time just over a month ago and that same pronouncement seemed innocuous enough, except that I had two of them, one of which I had stopped breathing prior to it and both ended up having me intubated with a ventilator doing my breathing for me in the MICU. Also, one of them had me literally paralyzed. I don’t think I’ve been so terrified in my life. Seriously.

The panel of white coats that visited me today assured me up and down that this wouldn’t be the case and I’d be out of there in about an hour just like Lenscrafters and they wouldn’t use the paralytic drug. Besides, I told them that since it was Halloween, I’d haunt their dreams forever if anything bad happened!

Academically, I can understand this is not a big deal

...and in fact my buddy from Salt Lake who was here last week had one of these things while he was here

...and I understand it’s totally routine

...and I understand from my nurse that it’s OK to be a bit unnerved or scared by it

...BUT I have to say the only thing that comes to my mind is the trauma from the last two where I awoke in a strange place and being told later it was nothing short of a miracle that I survived. 

THAT has been going through my mind all day long, followed by shaking and tears.  Is that what PTSD is? If it is, I have a new respect for my fellow vets who have traumatized and suffer from it. Yet one more bit of alphabet soup I’m getting first-hand experience with. Lovely, huh?

So, this afternoon (Friday, November 1) at 1:00 pm PST, I get to find out if there is something called aspergillosis, a kind of pneumonia, or infection or nothing. Now, all of these are somewhat common in immunosuppressant people like me who are on the post-side of a bone marrow transplant and they all can be treated by antibiotics and I’m not feeling sick, short of breath or displaying any other symptom. So, bottom line, it’s not serious (at this point), but rather for me, it’s simply the procedure itself. So at the end of the day, it’s getting through having this camera pushed down into my lungs to take a look-see at the fun that awaits it.

For some people, this really isn’t a big deal and as I’ve written in the past, my tolerance for discomfort and my threshold of pain has really ratcheted up, but because of the trauma associated with this one, I’ve struggled…a lot. Add to it, the sheer length of time I’ve been dealing with the leukemia, I’m getting tired of it. I really need a break from the 24/7 nature of this thing where I can take a day off, enjoy something that perhaps I used to take for granted, do something that doesn’t make me feel like I want to just keel over from exhaustion, not feel limited because going up a flight of stairs is so damned hard. Think about that the next time you simply go up a short flight of stairs, get out of a car, look at your head of hair in the mirror or something else that is just...normal. Yeah, yeah, I know, this, too, shall pass and I know it will. It's just really, really  wearisome after all these months.

I don’t really like complaining. It’s not my style, but it’s reality and I know that the road ahead is still got a lot of miles on it and I don’t have much of a choice but to walk it gladly, willingly, and eagerly, knowing that while I’m on it, I get to live and that's a good thing, isn't it Martha Stewart?!

At least my day started out with great joy and energy. My intent today was to share some playlists of music that had carried me along when I just needed a little extra something or even cry with a bit of joy because music has been a big help during these struggles.  We’ll get there.  In the meantime, I push through my own struggles and thank you for hanging with me…and if you haven’t figured it out, I really need you right about now.

OK, this is a short one today and I’m NPO (nothing per oral) after midnight so someone can push their toy down my throat. Damn, I'm hungry! *sigh*

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

Music for today is from Evanescance “Bring Me To Life” … yeah, my mood is a bit out there today.

How can you see into my eyes like open doors?
Leading you down into my core where I've become so numb
Without a soul, my spirit sleeping somewhere cold
Until you find it there and lead it back home

Wake me up (Wake me up inside
I can't wake up (Wake me up inside)
Save me (Call my name and save me from the dark)
Wake me up (Bid my blood to run)
I can't wake up (Before I come undone)
Save me (Save me from the nothing I've become)

Now that I know what I'm without
You can't just leave me
Breathe into me and make me real
Bring me to life

Wake me up (Wake me up inside)
I can't wake up

Alternative Medicine

I've had quite a number of well-meaning people suggest “alternative” methods for treating my cancer. Anything from herbal, homeopathic, and naturopathic remedies to non-FDA-approved medicines from other countries that come in a conveniently nondescript envelope, not to mention things like infomercials or flashy web sites or accu-puncture and energy healing have been sent to me. As much as I wish that some of these less painful and invasive methods were effectual, I have never met or heard of any success stories that would sway me to change my treatment regimen. I’m no big fan of pain and discomfort, but I know people survive the treatment and within reason, return to their lives as they knew it before, if not completely.

Rather than going on a rant, I feel it critically important to anyone considering treating their cancer with anything less than an established, proven standard of care look at the results because quite literally, your life is at stake. For a long time, cancer has been a somewhat academic, almost remote topic thing to me, but over the past couple of weeks, less so as people I know have lost their battle and another group receiving their diagnosis. So, I’ll co-opt a rant by a friend of mine who has walked a parallel treatment path as mine. I’m editing it a bit more to my experience and writing style, but I agree with his content. I’m also adding my dos centavos’ worth.

First, a couple of disclaimers:

1)      I loathe pharmaceutical commercials.  OK, full disclosures, I hate 99% of commercials, but especially those put on by big pharma. My take is that I shouldn’t be lobbying my doctor for what I think the best medication is for me. I will make sure I am fully informed on what it is that’s going into my body and understand the side effects beforehand. I am ultimately in charge of my treatment, but we work together, recognizing the doc is the guy with the training, not me.  Ironically, I only watch the commercials on the Super Bowl, but bypass the game. Go figure! Off topic…

2)      I feel strongly that no one should lose their standard of living because they get sick, especially through no fault of their own. Even for people who have health insurance, cancer has the potential to financially cripple a family for years if not forever. I hate the thought of someone losing their home because of medical bills, politics be damned.

3)      I have been treated through the Department of Veterans’ Affairs. My standard of care through the VA has been nothing short of world class. My treatment has been through entirely “Western” or modern methods and protocols.

4)      I do utilize some alternatives or supplements, primarily for comfort (e.g. essential oils, probiotics, over-the-counter multi-vitamins, etc.) as my medical team has specifically allowed so as not to interfere with their regimen. I am not anti-alternative as there is a time and place for these methods.

5)      I do my best to eat healthy and under normal circumstances, I exercise several times a week. I rarely use sweeteners or salt and currently, my exercise regimen is under the supervision of my medical team. When I’m not in treatment, I’m in the gym five times a week and anyone who knows me at all frequently sees me on two wheels, on the black diamond slopes, or in a pair of hiking boots in the Wasatch and Uinta Mountains. I’m an active guy and I do credit my active lifestyle for how quickly my body has responded to treatment.

I was diagnosed with Acute Myeloid Leukemia on February 21 following a series of blood tests and a bone marrow biopsy which showed 50% blast cells in my marrow. I was told that without treatment, I had about 90 days to live. That’s a sobering pronouncement no matter how you slice it. The hematologist/oncologist (hem/onc) insisted on admitting me right away as the diagnosis indicated a bona fide medical emergency. That night, I began a battery of tests that confirmed the cytometry from the biopsy and aggressive chemotherapy began a few days later.

Despite how you or I feel about big pharma, the manufacturers of the toxic chemical goodness quite literally saved my life. Yes, the prices of these powerful drugs is out of the ball park, but there’s no getting around the reason companies are in business: to make money. Health care is, by nature, humanitarian and it often ventures into the philanthropic, but at the end of the day, pharmaceutical companies have to make money to keep pumping out the drugs that keep us smiling...or alive. The kind of safety, sterile conditions, and extensive research required to develop, test, and implement the kinds of specialized drugs suitable for use in the health care market, let alone those that target specific cancers is exhaustive. There are processes in place to ensure that when the nurse hooks that IV to my arm, it’s not going to go in and kill me outright. And because these chemicals are so strong, medications to offset side effects make the treatment more bearable. All of this is because of big pharma and as much as I don’t like their advertising, I’m profoundly grateful for the end product. I’m alive to tell the tale and while I did hurl my fair share into those little green tubs, you can be sure nurse's littler helper, Zofran, made it far less often!

Admittedly, there are shortcomings in the system and where money is exchanged, corruption, collusion, and other problems crop up. But because hospitals and pharmaceutical companies make their report results public, they are closely scrutinized and we learn and make the right improvements.
 
The results of these improvements?
 
People are winning the battle against leukemia and other blood cancers whereas just a few years back, I might have been given an optimal couple of years added to my life with some rudimentary chemo. Diagnosis to death figures in the 1960s was even more dire with aggressive leukemia killing in as little as six weeks! Even as few as five or six years ago, bone marrow transplants were unsuccessful in 30% of recipients.  Advancements in treatment protocols, which includes improved antifungals, antibiotics, and antiviral medications has brought treatment related mortality rates to as little as 5%!

Think about that for a minute.

With success rates like that, attacking big pharma is not the answer. Very clearly, we’re winning the war on blood cancers and we’re now finding that bone marrow transplants are being used in treating HIV/AIDS with some promising results. No doubt other strains of cancer are benefitting from advancements in pharmaceutical research and development, but from my standpoint, I see people living life after cancer…and that, dear ones, is encouraging and exciting.

And that's especially so to me. I get a second lease on life.

OK, we know that because of FDA-requirements, the protocols and drugs used in treating cancer are making a difference. What can we say about alternative or natural medicine? The argument goes that much of what is in the drugs we take is essentially synthesized plants, right? My friend Paul (incidentally my daughter’s father in-law) researched a number of alternative methods and natural therapies recommended to him, again by well-meaning people and his findings in a nutshell?

Nada.

He was unable to find anything verifiable. My research has turned up a lot of information, but no verifiable results either. More often than not, the so-called research is a pitch to sell vitamins that could be purchased over the counter or some supplement offering a panacea for those who are looking for some sort of second opinion. Often, the enzymes being hocked are no more efficacious than existing over the counter medications, yet charging substantially more. Some sites will empirically insist that there are proven natural methods, but not provide that evidence. Others like Gerson Therapy in San Diego have testimonials, but fall short in scientific method.

 

Everyone else? Nice claims. Wishful thinking. No evidence.

 

People make excuses. "No one will study these herbs because they can't make money on them." That is just not true. It's hard to find a natural food claim that hasn't been studied. From my own situation, I am strongly convinced that good health is critically important in the role of healing not to mention prevention. We could greatly reduce cancer, heart disease, diabetes, and many other diseases by eating healthier and exercising regularly and it’s patently ridiculous to claim that doctors don't know and don't promote healthy eating and exercise. Without exception, every visit I’ve had to my doctor before my diagnosis and since, the role of nutrition and exercise have been emphasized.

 

Miracle health, from drinking açai juice, doing Pilates, or taking colloidal silver, is a fantasy. Colloidal silver, by the way, can permanently turn your skin gray if you drink too much of it. Oh, yeah, the medical establishment has studied colloidal silver, too.

People with no evidence to back up their claims, and who have no intention of keeping track of the success of their claims, fire salvos at a medical establishment are no better than the snake oil salesmen of the 19th century. Sure, there are still problems in our health care industry, but it is responsible for almost doubling our life spans over the past century.

That said, the responsibility for that quality of life is still up to us. Eat right, exercise, take care of your body, certainly. Use natural medicine, herbs, and diet, but don’t throw your doctor out of the equation. There are limits to natural methods…and cancer is not one to monkey around with.

Music for today from Jordin Sparks – ‘This is My Now”

 

There was a time I packed my dreams away
Living in a shell, hiding from mysellf

There was a time when I was so afraid
I thought I'd reached the end, baby that was then
But I am made of more than my yesterdays

This is my now and I am breathing in the moment
As I look around I can't believe the love I see
My fear's behind me, gone are the shadows and doubt
That was then, this is my now

I had to decide, was I gonna to play it safe?
Or look somewhere deep inside, try to turn the tide
And find the strength to take that step of faith

This is my now and I am breathing in the moment
As I look around I can't believe the love I see
My fear's behind me, gone are the shadows and doubt
That was then, this is my now

But I have a courage like never before, yeah
I've settled for less, but I'm ready for more
Ready for more!

This is my now and I am breathing in the moment
As I look around I can't believe the love I see
My fear's behind me, gone are the shadows and doubt
That was then, this is my now!

I'm living in the moment
As I look around I can't believe the love I see
My fear's behind me, gone are the shadows and doubt
That was then, this is my now, this is my now

Thanks to Paul Pavao – his original posting can be found here. I refer to his site on occasion as he is about a year past where I am in post-transplant AML treatment and my blog tends to be more of a story-telling where he incorporates more clinical information that I would. I’ve endeavored to keep the content because I agree with it, but both my focus and writing style are a bit different.

 

Not Just An Academic Exercise

There are only so many ways to say, “Cancer Sucks,” but it doesn’t change the facts about the illness and it doesn’t change how I got mine and it doesn't change who else will find themselves dealing with all the less-than-fun aspects of “The Emperor of All Maladies.” With some exceptions, it just seems so random. Having been on the cancer battle lines most of the year, there’s just no getting around it and it seems like everywhere I turn, people I know are battling with me not simply as someone who is encouraging me in my own fight, but as someone who now has entered the fray with their own cancer. It's kinda like all of a sudden noticing the model care you just bought when before they were all invisible.

I gotta say though for me, it’s a truly helpless feeling to witness someone’s processing that they have cancer, but all I can do is be candid in offering what I have gone through and be a source of encouragement, hope, and empathy to others who are now in the fight…and that’s provided I’ve been invited to be part of that discussion.

 

The aspect of cancer I haven’t been able to move past is the obvious – cancer kills. Academically, in my mind, on paper, I get it. Naturally, that’s one of the first places I went when I made the connection that leukemia is a blood cancer. What were the statistics that I would survive? Wasn’t it enough that the hem/onc doctor in front of me pronounced a death sentence on me of 90 days? I just couldn’t wrap my head around it all. Shoot, I didn’t even know the questions to ask. My prognosis was pretty positive with a bone marrow transplant, but even with that, I almost died twice in the space of a week. And yes, I still haven’t wrapped my head around that either. I just haven’t quite come to terms with it except that’s what people have told me. It has been a purely academic exercise, yet it really happened.

Then there are those who really, no-kidding, don’t make it.

Twice this week, I’m facing that situation and I’m truly at a loss for words, but I can’t avoid it. You see, walking into the MTU, it’s not unlike being a big family.  The caregivers and the patients alike are all part of something bigger than ourselves and we have a good idea of how everyone is doing. We can’t help but get emotionally attached to each other. People knew more about my situation than I did when I emerged from the MICU and eventually into outpatient status. Many of us stay at the same extended stay hotel and we swap stories and ask after one another. Earlier this week, I met up with a caregiver outside the laundry room who was commenting how good I looked. I asked after her husband and she was rather candid in that he wasn’t doing so well as he was out of remission and rather disappointed because of where that put him in the transplant process. Somewhere inside of him, he knew there was more to the picture and even said that he might die. She, rather matter-of-factly acknowledged as much that it was a possibility, not knowing that the next day, she would be getting the news that he, in fact, was no longer a good candidate for a transplant, which essentially translated into him being now a terminal patient with just a couple of months left on this blue ball. I was just outside the MTU moments after she received the news.

What do you say?

I sure don’t know…except to go with my gut and simply be honest. It’s a tough thing to face death, but I have to say that now having done exactly that, it gives me a sense of peace, but clearly others aren't where I am. I can't impart how I'm feeling to someone else and things can change, too. Shocking, end-of-life news is something everyone processes differently. I’ve said it many times and I’ll say it again, I have a lot left to do on this earth before I meet my demise and I honestly hope I get to do it all. But just like the caregiver I refer to above, the possibility that I may die before then is a possibility.

But I don’t know. I really don’t, so I asked a couple of nurses on the MTU how they've handled the situation over their tenures. Both have been working in transplant for years and it wasn’t all that long ago that the kinds of conditions that call for bone marrow transplants weren’t as successful as they are today. Advancements in pharmaceuticals have saved countless lives, but the nurses had to be the one to get families together to say their good-byes many times as the doctors either couldn't or wouldn't. In their experience, it again came down to being honest with the patient. They said that more often than not that the patient already knew things were pretty bad before it came to the point of ‘the talk’ and getting the family to a point of releasing their loved one with their blessing to move on.

Death and dying aren’t topics that people enjoy talking about, but evading them can be insensitive at best. Having come close to dying, myself, I can appreciate how important it is to make final arrangements so that those who are left grieving don’t have to second guess me, so yeah, I think it’s vitally important that people know what I think both in the legal and personal constructs. It’s not a morbid topic, unless of course, I were to dwell on the topic. With the experiences I’ve had this past week with incurable forms of cancer striking people I know as well as a couple of others where others are now starting their dance with the big “C,” I’m scratching my bald chemo-affected head a bit more than usual. Suffice it to say, there just seems to be no element of fair play, but then again, when did anyone say that cancer ever plays fair?

You can imagine that I’m a bit bummed about watching a member of our MTU family head home to live out the remaining few months he has…but at least he has a couple of months left. It’s definitely not a glass-half-full moment, but there is something in that glass. I’m bummed that I’m hearing from people I know are finding they are now fighting cancer like I am. But I’m still filled with gratitude that I’m making it and that there’s hope ahead and that there’s always some modicum of hope for those just finding out they’re now enlisted in a battle they didn’t choose either. I still don’t know what to say to the dying except the honest truth from my own heart because it really isn’t some academic exercise.

It’s very, very real.

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

Music for the day from Craig David – Rise and Fall

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

I always said that I was gonna make it,
Now it's plain for everyone to see,
But this game I'm in don't take no prisoners,
Just casualties,

I know that everything is gonna change,
Even the friends I knew before me go,
But this dream is the life I've been searching for,
Started believing that I was the greatest,

My life was never gonna be the same,
Cause with the money came a different status,
That's when things change,
Now I'm too concerned with all the things I own,
Blinded by all the pretty girls I see,
I'm beginning to lose my integrity

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

I never used to be a troublemaker,
Now I don't even wanna please the fans,
No autographs,
No interviews,
No pictures,
And less demands,
Given advice that was clearly wrong,
The type that seems to make me feel so right,
But some things you may find can take over your life,
Burnt all my bridges now I've run out of places,
And there's nowhere left for me to turn,
Been caught in compromising situations,
I should have learnt,
From all those times I didn't walk away,
When I knew that it was best to go,
Is it too late to show you the shape of my heart,

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

Now I know,
I made mistakes,
Think I don't care,
But you don't realize what this means to me,
So let me have,
Just one more chance,
I'm not the man I used to be,
Used to be

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

As a post script, here are some thoughts on what to say to someone who is dying. It’s not the end-all, but it’s a good start.