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)

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