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.

 

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

Too Much Ahead Not To Fight

The sheer trauma of facing the “big C” seems to be less daunting as the reality of what the treatment entails comes out. Treating any cancer isn’t something you can simply prescribe a standard drug regimen or operation. It’s a complicated, messy, painful process that dances the fine line between art, science, and intuition. I’ve spoken with two other AML survivors and their treatment is similar to mine, but because our age, physiology, and details differ, there are different stories.  I’ve had two survivors of other blood cancers visit me thanks to the transplant social worker here at the VA who have shared their experience with me and while their histories were much more severe than mine, they had as well more remarkable survival stories.  It gives me great hope that, given my own situation, that I have both reason to be optimistic and to take this thing very, very seriously.

I was given a bit of a setback this morning as I took my IV pole for a walk.  The fancy yellow bag that all the toxic waste gets disposed in, flagged a nurse in the oncology ward less than 100 feet from my door.  He unceremoniously told me to go back to my room and chewed out my nurse for having the gall to let me walk outside my room. That escalated things in no time flat and I got an immediate apology from my nurse, who has been SO wonderful that there was some protocol that apparently prevents me from going outside my room with anything chemo-oriented. She apologized for the way this other nurse treated me and escalated it to someone else who escalated it further and I was visited by the head of safety, who brought things back into perspective.  She came in and didn’t do anything but introduce herself and make sure I had everything I needed. She listened. She didn’t draw out the instance, but I did bring it up in a way that allowed her to take care of the situation without making a case out of it. I think between the two of us, this unpleasantness won’t happen to another patient. While I absolutely want to observe protocols and the safety of others, I’m an inpatient, not an inmate. I think that drove the point home. Suffice it to say, she did it right.

So, it looks like I will be doing 10 push-ups every time I go to the bathroom instead of walking around the floor. That’s partially due to the Leukemia Weight Loss Diet Plan® not exactly working.  I’m up another pound, so they put me on a drug to make me urinate more frequently.  Lovely, huh? I suppose that wouldn’t be such a big deal except that I have to unplug the drug metering devices that push the medication through the IV into me every time I get up out of bed. It’s pretty inconvenient, all told.

As Friday afternoon descends on the hospital, you hear the typical things you would at any other workplace.  Co-workers wish each other a good weekend and it strikes me that I’m on what I used to call “perpetual Saturdays.”  It really doesn’t matter what day of the week it is for me.  I’m here.  Weekends were not made for Michelob in the hospital.  They are quiet, eerie places where the walking wounded rest. Thankfully, I have a retinue of visitors lined up for fun and games and I even have a junior slinky on my hospital tray I can play with.  I’ll bet you haven’t seen one of those bad boys in years, huh?

So, we’re now moving into the stage of things where it appears to be the classic military, “hurry up and wait” phase.  My nurse brought in a trend of my labs and it’s fascinating to see just how off my numbers are and yet I’m feeling just fine.  It makes me wonder just how good I’d feel if they were where they should be – yet another reason that I am the eternal optimist. 

A rather new acquaintance asked me essentially what I wanted to do when I got through this ordeal.  I started making a bucket list of sorts back when the movie of the same name came out, but nothing firm.  My goals had a lot to do with simply getting back to Utah for so many reasons, the least of which being, it is where I just feel I belong. But, as I pondered that simple question, one of the first things came to mind was to complete a century bicycle ride (100 miles) for Team-in-Training, a charitable organization that supports the Leukemia & Lymphoma Society.  I had supported a high school classmate who ran marathons for the organization and I guess now it makes sense for me to give back to an organization that is out there for me as well.  I’d really like to ride another AIDS LifeCycle, but this year, I think it’s safe to say that’s not likely going to happen. I don’t have a formal ‘bucket list’ even though mortality had its sites on me.  So, I told my new friend that I had “too much to live for, too many unspoken desires, too many things yet to do, too many stolen kisses yet to claim, too many mountains yet to climb…just too much ahead not to fight.” And so it seemed that if there were any other motivation, that was it – too much ahead not to fight. As if there were any other option.

Game on!

Thanks again to you all for fighting with me.