Copping an Attitude (the good kind!)

I’ve found in my rambling thoughts that I often come full-circle on a number of similar topics that seem to debut, bounce around my cerebral cortex for a while, register some sort of reaction, and then move on to the great baggage carousel in my mind. I pick up a new designer bag of a topic and deal with it, and at some point when that first one comes back around I take another look at it.  This time around, though, I’ve somehow changed internally; my threshold of pain is higher or perhaps I’m weaker for that matter; or maybe I just see a different side to that rugged North Face duffle where I’m keeping all my emotional baggage.


On the left, this is the t-shirt that turns the heads in the hallway and the doctors make the most comments about...and hey, it does make the statement, doesn't it? (and I won't take it lying down...or maybe I had to on occasion) On the right, I had to hang the "name your poison sign on my door. I saw the sign, ostensibly to go over someone's home pub and knew it was for me!





One of the very first designer bags of topics I picked up that I decided – and then discovered was entirely true – was that my attitude toward putting cancer squarely in the rear view mirror would play a pivotal role in how well and how fast it would actually happen. I read about it, talked about it, shared experiences with other cancer survivors about it and it was unanimous: however else you approach this bad boy, a positive outlook mixed with a dash of humor is crucial. Now, these several months after that decision, I can tell you without a doubt that it has not only made my life possible and my healing move along well, it has made those around me push the process along, doubling my own efforts. It almost sounds cliché to say something like that, but all I can go on is experience and it has made all the difference in the world.

I have a bit of a reputation for my t-shirts, hats, and door signs poking cancer in the eye.  From the medical staff to the support staff (including the guy who empties the trash and cleans the room), everyone knows me by first name and when I came back from the MICU, in addition to the high quality standard of care I would naturally expect, the genuine concern shone through on people’s faces.  You can put on a plastic smile for effect, but you can’t manufacture the real thing.

And even today, I was reminded during my outpatient caretime of just how real the empathy is among all of MTU patients, their caregivers and on the part of the staff. Another patient I met just before starting my own transplant had finished his inpatient phase, and was discharged over the weekend. He’s a bit older than I am and had a bit of a rough go for a few days. His gratitude shone through the incipient tears of being alive, of being on the road to more years of time with his family, and doing the things he loves. It was almost palpable and that lump in my throat was lock-step with his. The conversation in the room became more authentic rather than simply comparing scars with each other, and let’s face it, we all have some good ones. Even though none of them are the kind you can see, they’re very, very real. 

It reminded me of the courage each and every one of us had to submit to a regimen that actually takes some of us out and without a doubt, the treatment is just plain downright unpleasant and painful, yet it saved our lives. The treatment may rival the disease some days, to be sure, but we live to fight another day and it somehow makes it worth all the crap we go through. There have been days, honestly where I’ve struggled with whether I could do this or not and I’m sure I’m not alone in that lack of courage, but like so many other things I’ve endeavored in my life, I've had to simply put one foot in front of the other and hope my body carries me forward. Some may chalk it up to intestinal fortitude or toughness and to be sure, there's an element of that in there, but without people holding my hand and encouraging me, bravado and courage are the least of my worries. It's a tough, long haul...it's where attitude must collide with my lack. And I take the next step.

I have heard rumblings from people that it was touch and go for me at one point and that I had apparently stopped breathing, but again, it’s an academic thing. It’s not something I remember, so the trauma was what happened afterward in being hooked up to a machine that helped me breathe for a few days, unable to communicate without the help of an old-school clipboard and ball point pen. I found out just a few days ago that statistically, I had a scant 2% chance of making it out alive from that procedure, yet somehow I beat that. At the time, it was again, one foot in front of the other, unaware of the odds. But after all is said and done, I think the sentiment that comes to mind is something a brave young girl named Malala Yousufzai said in an interview with The Daily Show’s Jon Stewart I saw the other night.  She told him, “Nothing becomes precious until it is snatched from our hands.” Malala is the 16 year-old nominated for the Nobel for her courageous stand against the Taliban for girls’ education in her native Pakistan…and getting shot in the face for it. Indeed, one more example of if someone can endure a gunshot to the face for a principle, I can certainly be connected to a machine. Even in my worst of times, I’ve found that I am so very fortunate and so very filled with gratitude that I only battle cancer of all things. It’s not like someone’s holding a gun to my head! I’ll heal and the ordeal I’m working through now will fade over time.
 

 

Yeah, there are some tough days ahead to make the good ones even better, but my steps are getting a bit more assertive and assured and even the stairs are becoming less daunting. I harbor no illusion that this is going to be at all easy of course, but I'm making it. My attitude hasn’t changed appreciably except in resolving to make the very most of the days I have left, whether it be 5 years or 50, and yeah, I’m rooting for 50 good years ahead.  I have so much left to do, most of which I haven’t the faintest idea of what I’m supposed to be doing.

But I’m not going to wait for some sort of sign. Life isn’t on hold because of an illness and I won’t be defined by my medical condition.

As one example, I’ve felt strongly for some months in sponsoring a child and it took somebody standing out in front of an art museum with a smile and a clipboard to push me off the bench of my own self-introspection to actually do it. All of my own children are grown and moving into their own adulthood, so I had no excuse really. Another commitment is to write a book out of my experiences in leukemia.  There are a lot of books on cancer and the clinical sides of things, but I just found myself overwhelmed by the medical facts and figures when I just needed something else.  I’m hoping to offer some humor, anecdotes, advice, and a little pokin’ in the eye of the foe of the battle none of us chose. I’m sure more will surface over time, but I’m not putting 8 irons in the fire like I used to. Perhaps a couple to keep things interesting, but I think the good ol’ bad ol’ days of so-called multi-tasking may be a thing of the past.



This is Guillermo. He is 10 years old and lives in Guatemala. After a lot of research into these kinds of charitable organizations, I elected to go with Children International. Yup, I decided to get off the fence and make a difference. Whatever you do to change the world in a positive direction, I thank you!

Let life be enjoyed and lived, not endured. Carpe diem and all that other Latin stuff!

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

Music today from Leeann Rimes – Life Goes On

 

Life goes on
Life goes on

You sucked me in
And played my mind
Just like a toy
You would crank and wind

Baby, I would give till you wore it out
You left me lyin' in a pool of doubt
And you're still thinkin' you're the Daddy Mac
You should've known better but you didn't and I can't go back

Oh, life goes on and it's only gonna make me strong
It's a fact, once you get on board
Say good-bye 'cause you can't go back
Oh, it's a fight, and I really wanna get it right
Where I'm at, is my life before me
And this feelin' that I can't go back

Life goes on
Life goes on
Life goes on

Wish I knew then
What I know now
You held all the cards
And sold me out

Baby shame on you, if you fool me once
Shame on me if you fool me twice
You've been a pretty hard case to crack
I should've known better but I didn't and I can't go back

Oh, life goes on, and it's only gonna make me strong
It's a fact, once you get on board
Say good-bye 'cause you can't go back
Oh, it's a fight and I really wanna get it right
Where I'm at, is my life before me
And this feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah, got a feeling that I can't go back

Life goes on, and it's only gonna make me strong
Life goes on and on and on

Shame on you, if you fool me once
Shame on me if you fool me twice
You've been a pretty hard case to crack
I should've known better but I didn't and I can't go back

Oh, life goes on, and it's only gonna make me strong
It's a fact, once you get on board
Say good-bye cause you can't go back
Oh, it's a fight and I really wanna get it right
Where I'm at, is my life before me
And this feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah
Gotta feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah
Gotta feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah
Gotta feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah

Perspective

True to form, after my posting yesterday, I was introduced to someone today who put everything in perspective for me. A med tech that I hadn’t yet met was assigned to me yesterday whom I found out was a two-time cancer survivor.  She was also assigned to me today, and as I had finished my shower, she was changing the linens on my bed.  We chatted a while when she had finished and with the challenges she had and her positive attitude, I felt buoyed at the possibilities for the future. In trying to articulate how I felt, how I’m hurting, how I’m grasping for hope, I didn’t have to explain anything. As a survivor, she just knew - instant empathy. Now, that doesn’t mean that only those who have walked through the valley of the shadow of cancer can understand, but it’s just easier to get to the heart of things. Just before lunch, I wandered down to physical therapy and rode the stationary bicycle for about 20 minutes. After being accustomed to riding long distance, 20 minutes seems so paltry. Yet it’s what I can do right now. On the way back to my room, my new med tech introduced me to another vet, ostensibly because we’re the two youngest guys on the ward – but it’s the someone who unwittingly put things right for me and actually said that the best thing that could have happened to him is having his legs blown off.

If that doesn’t get your attention, not much will. He was situated in the same bed I started out in my first night in the VA hospital. The other bed in the room was gone and there were no chairs, so he had me sit in his wheel chair – a much more comfortable rig than the one I had been ferried around in during my bad days of induction chemotherapy. When you spend as much time in the thing as he does, it better be the most comfortable thing around! We shared some small talk, but in the same way I needed to talk to someone who was a cancer survivor, I found someone who, as a veteran, didn’t have the biases that are so common to both Utah as well as the officer corps.  We just connected and the small talk progressed to what I would have considered a rather tough thing to talk about – how he lost his legs.  For him, he jumped right into it, telling me the harrowing day that as a combat corpsman, he saved his two compadres, was slammed into a wall where he sustained unspeakable injuries, was stabbed by an Iraqi soldier, and still lived to tell the tale.

And yet, he was able to smile through the telling and actually say to me that he would rather be in his shoes (figuratively, of course) than mine.

No, it doesn’t take any time at all to find someone else in the hospital who is in worse shape than you, but I guess I didn’t take myself as being considered in worse shape than someone else. That’s perspective. The reason the perspective is there is not simply because we’re all different or because our experiences – even the same sorts of experiences – vary nor is it because we’ve had different cultural or socio-economic upbringings. It’s because we’re moving from one point in life to another.

In my posting last night, I quoted Nick Vuijicic as saying that we may not control what happens to us, but we can control how we respond. So, whether it’s an illness, injury, or personal crisis of some other sort, it’s all the same. We can choose to be defined by an event or we can be transformed into something new and better from our experience. Sure, we should expect some good days and bad days in the process, but we should also expect something genuinely good at the other end of the process. I’ve seen it in myself, I’ve seen it in others, and I saw it again today with my newfound friend. I can’t say that I would be able to be as truly upbeat as he is today after going through what he has, but it simply reinforced the point I’ve been espousing from the day I got my diagnosis and have been trying to project each day – healing is as much in our own power as it is within the medical arts. They have to work together. One without the other probably won’t get the desired result.

I’ve had to reinvent myself after a personal crisis or two and it’s fair to say that there will be some amount of reinvention at the end of this adventure in cancer. There will no doubt be some constancy in my life and in relationships, but there will also be new experiences and new people that will pave the way for heightened understanding and empathy as well as a new perspective in my life and that of others. I’m seeing though that it doesn’t always take the extreme of a crisis to do that, but we simply have to be open to new ways of thinking and seeing what is going on around us.

One of the hem/onc doctors described the bone marrow transplant as a super-duper long-term consolidation chemotherapy that totally kills the leukemia cells, which on the one hand didn’t thrill me since from my viewpoint, I’m shooting for "the cure." On the other, that’s what chemo does on the short term, so the description pretty much works. And in the same way, we all have small doses of chemo to help us kill off the bad things in our lives. And just like leukemia, if you don’t have the right circumstances (or in my case ,the transplant), the bad stuff comes back and it can take you out of the game. So, the important take-away here is to embrace the change, the new perspective, and be open to reinventing yourself to the improved person you know you want to be...and it's OK to have a bad day from time to time. Change isn't a cake walk. Perspective is not something that has to remain etched in stone from years of habit, but rather something that should develop and be engrained with the nuances of experience – yours and that of others. Enjoy the journey!

My music selection today is from Simon Webbe in anticipation of better days ahead – Comin’ Around Again

I've been sittin' in the darkness
But the sunlight’s creeping in
Now the ice is slowly melting
In my soul and in my skin
All the good times, my friend
Are coming around again
 
I've been thinkin' reminiscing
Of better nights and better days
Hidin' in the refuge of
Memories I've made
I gotta feeling within  
It's comin' around again

It's comin' around again
We've been so long waiting for the all-time high
We got a damn good reason
To put your troubles aside
And all your winter sorrows
Hang them out to dry
Throw it away, gotta throw it away
All the colourful days my friend
Are coming around again

The "New Normal"

I’ve written in a previous post that that “normal” should never be the goal, but that we should be re-defining normal and actually living with intention. Having had two extended stays at the “other Club Med”, the ordinary things in life became rather intense for me today in a good way. I went to bed about 8:00 last night since I hadn’t gotten much sleep at the hospital; and I slept uninterrupted until my usual 5:30 at which time I got up, took my vitals on my own (yes, doctor, I am just as paranoid about my health and have no desire to be camping out in the ER!), took a nice shower, made some coffee, and cooked up my own breakfast.  Now, breakfast for me usually is a pretty low-key affair consisting of fruit and yogurt, but I was hungry, really hungry, so I made some potatoes with bacon and onions and a couple of scrambled eggs. Admittedly, this is still a pretty non-eventful breakfast. Unless, of course, you’ve been eating from a tray in a hospital room for about a month all told. Then, the smells, the texture, the very details about each bite just became intensely satisfying. It literally made me cry…and why? I can’t say exactly. I mean, I am a pretty good cook, but not that good. Why it would elicit tears is beyond me.

I’m sure gratitude plays prominently into the mix, but without digressing into the paralysis of analysis, it just comes down to redefining what ‘normal’ is. Normal used to take pretty much most everything for granted, including the simple act of drawing an uninhibited breath. Today, I found not just breakfast, but so much more to be vibrant and downright fascinating. I found myself smiling a whole lot more than I might have otherwise. I was also appreciative of both the good and the bad side to wearing a surgical mask in public.  So many people are a bit scared seeing someone wearing a mask that they make eye contact long enough to register the mask and look away very quickly. They won’t talk to you, but in making my grocery run, two workers at Smith’s (my local grocery chain) made a point of greeting me and engaging me a bit. That hasn’t happened before when I've been behind the façonable yellow mask.  In fact, when my daughter was here, the only people that would talk to me on my walks around the block were panhandlers.  Everyone else, including the family with small children made haste to run away, literally.  Run away from the guy with the skull cap, glasses, and mask. See if I give out candy next Halloween…and all this time, I thought it was the fancy hair-do! Go figure.

'Normal," today, isn’t just something I’m having to redefine because of what I can and cannot do thanks to temporary physical or medical limitations. It’s something you and I both have the choice of discovering and it’s a product of outlook, of attitude, of refusing to be defined by circumstances or expectations. It’s accepting that perfect will never be something we can achieve. And that’s not something advertisers and retailers and a host of others want us to believe, but let’s be clear about this: perfection is the harbinger of death. You can perfect a technique, you can perfect a look, but when you get to that stage of being perfect, you stop trying. The act of struggling is what keeps us alive and, for better or worse, it brings us together. To struggle, to strive for achievement and productivity is to find meaning and to live. Is it any wonder that when people retire, they find something to keep themselves engaged? Those who don’t find some way to continue participating in their culture or family languish and fade away to their demise. I look at my own grandfather who taught himself computer skills and to self-publish; and well into his 90s, translated Turkish literature, selling it on amazon.com. (Click here to see the list of titles that with the able editing help of my grandmother, you can still enjoy.) He wasn’t into making money on it, but he was active, lucid, and contributing. Had his eyesight not given out, I seriously have to wonder if he’d have made it to 100. He was just that kind of guy and one whose positive example I want to emulate.

Of course, the other part of the new normal is a bit of attitude. I used to be so sober-minded that people called me, “Your Seriousness.” Where’s the fun in that?  So, part of my new ‘normal’ attitude has an edge and is a whole lot of fun.  Here I am “pole” dancing, replete with my admirers stuffing dollar bills into my waistband. Not exactly what you thought pole dancing was all about, was it?  And just imagine the kind of coordination and lack of inhibition that took!

 

And here’s something that just came in the mail today to poke fun at myself. I think I’ve found my sideline business for those of us afflicted with the side effects of chemotherapty, but haven’t lost our sense of humor.

So meet the new ‘normal.’ It’s going to look different tomorrow than it does today, but one thing for certain, it’ll be a whole lot funner than yesterday!

Today's music:  "Good Life" by OneRepublic.

Oh this has gotta be the good life
This has gotta be the good life
This could  really be a good life

 

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