Sprinting a Marathon



A bone marrow transplant is no small affair and part of the treatment requires I have a full-time caregiver to assist. And I gotta tell ya, it’s not a trivial requirement. The kinds of things I’ve had to deal with have been nothing short of overwhelming at times. Thankfully, I’ve had a really great support network to carry me through this very long-term process that has been ongoing since February. Once my marrow donor was identified and I came to Seattle, I had the great good fortune to have my two sons come be with me full-time from their homes back East.  My older son pretty much put his life on hold and has been nothing short of awesome. With as much time as I’ve spent inpatient and the commutes to the hospital since going outpatient, we’ve really had some great conversations and gotten caught up on lost time.
 

Having my younger son has been able to join us as well has been great as well as I've really missed the boat as he's grown and was looking forward to this rather concentrated, if not intense, period together to get to know him as an adult. He has gotten a job and tends to be more involved in FIFA soccer than anything else, but I was hoping to engage him with the same kind of casual conversation as well, so last Saturday I blocked some time out just to go goof off. Rather than a movie where we really couldn’t talk, he suggested bowling, an activity I have always enjoyed and usually am pretty good. Since it’s not a real high-impact sport, I thought this was a great idea. My whole musculature has atrophied thanks to the steroids I've been prescribed and the extended time in the hospital bed. As an avid cyclist, I’ve been downright horrified to watch my legs puff up and then turn so emaciated. Even so, bowling didn't feel like much of a stretch. 

My debut at the Acme Bowl in the lovely downtown Seattle suburb of Renton was more of a stand-up comedy act (if I could have kept upright, that is) than any attempt at physical prowess! I picked up a 14-pound ball as usual and it felt fine. I lined up and my muscle memory kicked in just fine. And that’s where it all ended. Muscle capability and strength weren’t quite there yet and the ball’s inertia carried me to the floor in grand ignoble style. A second attempt was no better, but this time the ball actually went down the lane and I got an 8! Whoo-hoo! It was clear I wasn’t ready for this. The silver lining in this one was that there was a family bowling next to us whose older son was an IH sarcoma (bone cancer) survivor and they were more than just a little supportive.

Yet another example of my best intentions gone awry!

We will go bowling again, but I think it’s not going to happen for at least another month or so…and my younger son and I will find something else where we can spend time together or just hang out away from the hotel room. I also had to eat my own words about the whole leukemia picture – this is not a sprint, it’s definitely a marathon. 

Let’s put this in perspective (as much for myself as for you, apparently!)

While cancer can be – and is, in my case – a rather fast-moving disease, our bodies take time to heal. In most of our collective experiences, injuries of any kind really tend to heal pretty quickly. Even broken bones may take a matter of only a couple of months to mend and you make pretty quick strides to return to life as it was before. We have scars, some aches and pains, but we move on. Surgery seems to be almost lightning quick and they send you home, or so it seems. Sure, there are exceptions, but from what people tell me at the water cooler and other social places. I was told this morning that for every day I spent in that comfy hospital bed, I'll likely need about a week rehab to get back to my former pre-transplant athletic glory. By those calculations, it could be as much as 315 days, dear ones...315! Buckle in for serious long-term training.

Managing a chronic or acute illness like cancer is completely different. Doctors look at trends and really need to be conservative, despite my pleading and cajoling to unleash me on society. Patience on the part of this here patient hasn't exactly been a virtue! As much as I wish this could just be over, the fact of the matter is that I will have to be very aware of what my body is telling me for the rest of my life. And that is no exaggeration. It’s not that I will be forever sick or waiting for a secondary cancer to surface, but in a real way, I’m starting over. I have the immune system of a baby and will have to start over with all those shots you take your kiddos for, before being allowed to go to pre-school or kindergarten. I’ll have to be hyper-sensitive about sun overexposure to prevent something called GVHD (graft versus host disease) from kicking in and making me sick. And just like the rest of us middle-aged folk, I have those health issues as I get older. Certainly not venturing into hypochondriac territory, it’s just something I need to be more attentive, not unlike any of you. No more cavalier health care for me, I'm afraid.

It’s a marathon. It’s constant. It’s life…and it’s me.



From left to right, LLS 'honored heroes' Adam Uribe, myself, Kevin Robson, Christine Aguilar, Tony Aguilar and Hilary Jacobs. All of us here are survivors. All but our little guy, Ronin in the front row are running marathons to raise money for leukemia and lymphoma research. I'm in a cycling jersey, so you know where I'm focused. Hilary just finished one of her events this weekend!

Please consider donating to their fundraising effort.  Clicking on their name will take you to their home page where I could find one. For more information on Team In Training and to find a local affiliate, click here.
 

Speaking of marathons (for real), my congratulations to the Team in Training Utah Branch (Leukemia-LymphomaSociety) folks who completed their half-marathons and marathons this past weekend. I know some are continuing to raise money for the LLS and I’m including a link to my friends who have made me one of their honored heroes (something for which I did nothing to earn any accolades but am grateful for their support!). One of the first calls I made when I got my diagnosis was to LLS because in a year, I want to be riding a century ride (100 miles) in the LLS support. Just 30 years ago, I wouldn’t be alive because of leukemia. Today, thanks to their grants and research, countless thousands of us are surviving and thriving.

It’s a long process. It’s uncomfortable, sometimes painful and deadly as I can attest, but there’s something we have now we didn’t have 30 years ago: hope.

I’m dedicated through my writing to offer that hope and a little humor in the process…and to be sure, writing has been cathartic to me. But in the end, my make-up is to put the rubber to the road, literally, and make a positive, tangible difference.  My hope in 2014 is to volunteer with their races and in 2015 and hop on my bicycle for a 100-mile ride fundraiser. It’s a long way off, but that’s where my mind’s eye is right now…just not on the bowling foul line!

Stay strong, be well, and much love to you all

Music today from Carlos Santana’s album Marathon, a meditative piece called Aquamarine I came across back in high school.

 

Ignore the Numbers – Fight Like Hell

We all make a lot of decisions based on the numbers and for most things, we have to weigh what the numbers are telling us in order to make informed decisions. Most of those numbers are routine things – how much we can afford, how fast we’re driving, how much time it will take, etc. These things tend to be routine and the consequences for screwing it up aren’t typically a big deal. Then there are other decisions that involve a bit of fuzzy logic. They involve feelings, a lot of unknowns, and probabilities. Those consequences?  Well, they have more oomph to them and screwing them up can cost money, relationships, or in extreme circumstances, your life!

Yeah...this is what it feels like when you get the
heavy diagnosis...and that little gerbil's tachometer
is definitely in the red zone and then...he stops and
spins until the wheel stops.

When a doctor hands down a heavy diagnosis, there are far more questions than answers; there are far more decisions than possibilities; and there are far more feelings than facts. The prognosis for illnesses gets progressively more complicated with the ailment of course; and as the word survival enters the picture, we want numbers. The kicker is that the numbers we really want are the ones that are always the difficult ones to estimate.  After all, everyone is different.  Everyone reacts differently to treatment and comes into that treatment in different condition and with different histories, sensitivities, and attitudes.  There are just a lot of variables that come into play and not even the best doctors can hone the number accurately. It comes down to their past experience, the results of studies that have similar demographics and the art of guessing. It’s not always reassuring, but it’s reality.

When I got my diagnosis and I found out the particular type of leukemia and then the specific stage it was classified, I started researching what my chances of survival were, based on published studies that were broken down by age and race from both the American Cancer Society and the Leukemia Lymphoma Society. They were stark and honestly not very optimistic, but my hematologist was able to factor in a couple of other things that the studies were not: I was in pretty good physical condition when I arrived and my attitude was positive. When I asked for the numbers, they were far better than those published in the ACS and LLS studies. On the other hand, the docs were quick to point out that the transplant docs were in a better position to make that all-important educated guess and a lot was resting on how I responded to the transplant, which is yet to come. Even though I was introduced to some new terms like GVH (graft versus host) disease and TRM (treatment related mortality), I remain optimistic.

It has been almost four months since my diagnosis and as I’m sitting up in a hospital bed with a nurse connecting me with another dose of chemo fun, I’m feeling fine. These consolidation rounds are nothing like my first three weeks as an inpatient during my induction where I have never felt so sick in my life.  I know the chemo is working internally and my body responds like clockwork so far.

The big unknown for me is the transplant.  There’s the waiting, how I’ll respond, how long it will take to recover and so on. Suffice it to say, the unknowns play a huge part in how we respond to the tough words a doctor may give, but I’ve come to realize that despite how we base our routine lives on numbers, this is an instance where numbers be damned, we have to fight like hell for ourselves.

I just finished reading Lance Armstrong’s story of his early years – It’s Not About the Bike – which specifically discussed his battle with cancer as a world class cyclist and then beating the odds and returning to world class status and ultimately winning the Tour de France for the first time. Regardless of what you might think of the man today, the story is compelling and courageous, especially considering the fact that his testicular cancer had spread to his lungs and his brain. He fought a difficult uphill battle with his cancer, but he won.  It wasn’t until the end of the book after winning his first Tour de France where his doctor revealed that his chances of survival were a mere 3%! Perhaps had he known this, he may have given up; or maybe it would have given him even more reason to battle on. That’s another facet of the prognosis the doctor cannot know – our resolve to fight or resign to mortality.

I’ve unwittingly overheard one of those tough conversations about a man’s cancer taking the turn toward terminal and his gracious coming to terms with his inevitable demise; I’ve also made friends with someone who laughs at his own cancer in the face; and I’ve known someone who received an identical diagnosis as his own brother, one of which made his remaining months those of peace and enjoyment and the other going out fighting. And every one of those situations ignored the numbers and fought like hell for themselves.  You see, fighting doesn’t necessarily mean that you seek out the best doctors, the clinical trials when conventional treatment doesn’t work, but it can! 

It all comes out to determining what the best course of action is. It may, in fact, mean doing a lot of footwork to find the right second, third, or fourth opinion to get the right doctor that has the expertise you need…or it may mean fighting with loved ones to let you enjoy your remaining time on this mortal plane with dignity and comfort.  It may mean winning the fight within your mind to find the peace with whatever decision you arrive. Numbers may mean nothing or everything, but ultimately making the decision you can live or die with is the one that gives settles you. And that’s why, my friends, I say, “Ignore the numbers and fight like hell” … for you.

Music for today – Tim McGraw’s Live Like You were Dyin’

He said, “I was in my early forties
With a lot of life before me
When a moment came that stopped me on a dime

“I spent most of the next days, looking at the x-rays
Talking ‘bout the options and talking ‘bout sweet times”

I asked him when it sank in
That this might really be the real end
How's it hit 'cha when you get that kind of news?
“Man, what'd ya do?”
He said,

“I went skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin’ ”
And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

He said, “I was finally the husband
That most the time I wasn't
And I became a friend, a friend would like to have”

”And all of a sudden goin’ fishin’

Wasn't such an imposition
And I went three times that year I lost my dad
Well I, I finally read the good book
And I took a good long hard look
At what I'd do if I could do it all again
And then

“I went skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin’ ”
And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

Like tomorrow was a gift
And ya got eternity to think about what to do with it
What did you do with it?
What did I do with it?
What would I do with it?

Skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I watched an eagle as it was flyin’
And he said, “Someday I hope you get the chance
To live like you were dyin’ ”
To live like you were dyin’
To live like you were dyin’
To live like you were dyin’
To live like you were dyin’

Somebody Else




 This blue jay used to light on his hand
earning its reward of a peanut. It was
a show he always enjoyed giving!
 

 

Today would have been my grandfather’s 100^th birthday. He was a great combination of wise soul, cantankerous curmudgeon, and if you pressed him, you might see an undercurrent of the compassionate ol’ guy as I remember him. The last few years of his life were marked with the typical maladies of old age, but from having spoken to those closest to him, the one that I think robbed him of his will to live was macular degeneration – he essentially went blind. The things he had grown accustomed to over his long, rich life were difficult if not outright impossible without his sight. I have no doubt that, had this happened to him even 10 years ago, he’d have found a way to ride that lawn mower in summer and clear the driveway of snow in winter. Last June at the incredible age of 99, his body and mind finally had a pow-wow and … well, I’m sure he just found something else to do in some other place. (Here are my thoughts from a year ago when he passed away).


So, although I’ve had anything but a medically boring day, my mind hasn’t been on me, but him. It has also been on the group of cyclists in Orange County, CA - Team OC - with whom I rode over 500 miles last June to raise money for HIV/AIDS. They’re coming down to the wire as I would have as well. Suffice it to say, I retired my number this year. Next year? I’m hopeful to be with them. My mind has also been on a former co-worker who dropped me an email over the weekend.  He just returned to full-time work after his own bout with a blood cancer, so it started my day off with great hope. Yup, my mind has been all over the map today, so what I’d like to do instead of comment on one of the topics that is on my list, I’d really like to hear from you…specifically:

-          I enjoy posting a music video that has a theme to what I’m going through, but the thing is this – music really affects me in a number of ways, the most poignant of which encourages me to look beyond the here and now. I have a few left in the hopper, but what I’m hoping you can do is send me a list of songs that lift you out of your own malaise.  I’m listing out the songs I’ve posted to-date.  Give me a holler if one resonates with you. I’d be interested in finding out the what and the why.

 

-          Perhaps you have questions that you might not otherwise ask. To put this in context, I went to a Team in Training Kick-off on Saturday. I’ve been chosen as one of five honorees – essentially the local face of leukemia so that the people training for half or full marathons can put a face to the disease they’re raising money for.  One of the other honorees is a little guy of about 4 or 5 years old, if that much. You can see him in the picture next to me.  He has had a rough bout with ALL, but he’s doing well.  His dad spoke to the group about their experience, but one thing that he did that stood out to me is that he wouldn’t use the word, “cancer” in his presentation.  In fact, the PowerPoint presentation had the word like this c$#*@ as if it’s a cuss word.  If you’ve read my postings, you know I won’t hide nor will I try to elicit sympathy, but rather face this monster head-on. With that in mind, ask me whatever.  If it’s something I can share publicly, I’ll write about it, respecting your privacy of course.

 

Leukemia & Lymphoma Society (LLS) Team in Training
Utah branch. These folks are running half or full marathons
to raise money for LLS to cure blood cancers. The little guy
in the middle with the purple jersey is an ALL survivor;
along with another woman hiding in the back in one of the

red shirts, we are five honorees for whom the team is running.
We're like poster children (you know I'm a big kid).

-          I’m still looking for entries in to my “Perfect Moment” contest. My investment has been in people my adult life and I’m reasonably sure that’s why I’ve had such amazing support from people out in cyber-land – because the majority of people who read this know me well enough that, had we been in the same geographical location, I’d see them on my doorstep. And actually, I have. They’re the same people I’d be visiting as well if the tables were turned. So, please, tell me about your perfect moments (see this posting for the details).

So, really, I’d like to hear about you today.  Take a few minutes and drop me a line either via email or if you like, a Facebook message (please don’t post it to my wall) as I’m as interested in you as you are in me. It’s how this works. When this is all over and I’m no longer a cancer patient wrapped up in medical detail, relationships continue to grow; and the best ones only use electronic media – they don’t stay there.

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

OK, since we're talking about a couple of athletic events to raise money for charitable organizations, both of which I'm personally invested in - one as a participant and the other as, well...a participant (different kind of course).  Today's music: Win by Brian McKnight from the movie, Men of Honor.

 

Dark is the night
I can weather the storm
Never say die
I've been down this road before

I'll never quit
I'll never lay down
See, I've promised myself
That I'd never let me down, so

I'll never give up, never give in
Never let a ray of doubt slip in
And if I fall, I'll never fail
I'll just get up and try again

Never lose hope, never lose faith
There's much too much at stake
Upon myself I must depend
I'm not looking for place to show,
I'm gonna win

No stopping now
There's still a ways to go
Ohh, someway, somehow
Whatever it takes I know

I'll never quit, no, no
I'll never go down
I'll make sure they remember my name
A hundred years from now

I'll never give up, never give in
Never let a ray of doubt slip in
And if I fall, I'll never fail
I'll just get up and try again

Never lose hope, never lose faith
There's much too much at stake
Upon myself I must depend
I'm not looking for place or show,
I'm gonna win

When it's all said and done
My once in a lifetime, won't be back again
Now is the time, to take a stand
Here is my chance, that's why I

Never give up, never give in
Never let a ray of doubt slip in
And if I fall, I'll never fail
I'll just get up and try again

Never lose hope, never lose faith
There's much too much at stake
Upon myself I must depend
I'm not looking for place to show,
I'm gonna win