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.

 

Fear Not

You’d have to be totally numbed to life to not have some fear about a cancer diagnosis.  Sure, every fiber of my machismo bristled at the thought that I was somehow infested with this thing that would try to take me out of the game on a permanent basis, but the real me – you know, the one who has feelings and kids and people who love me – that one was pretty damned scared. My military training was in full force in that I put on that brave face and tried to have it out with the doctor. Of course, if you’ve read anything that I wrote about that conversation, you know he pulled the trump card and won. That conversation went something like this:

   Me      I feel fine.  I don’t have any of the symptoms you listed.
   Doc     The pathologist was adamant that you have leukemia. You have 50% monoblast cells in your bone marrow. I want to admit you tonight.  This constitutes a medical emergency.
   Me      Let me get this straight. I feel fine.  I’m on my way to the gym and you want to bring me in here and give me chemicals to make me really sick?
   Doc     (trump card) You could leave tonight and I can pretty much guarantee you that within 30 days, you will be in the Emergency Room very ill and in another 60 days, you’d likely be dead. The choice is yours.

Insert discussion between mom and doctor here. 

   Me      Can I at least take my car home and put it in the garage?
   Doc     (not amused … and not wanting to let me leave to get an overnight bag. Kill joy!)

It was at this point, of course, my mind began to spin and I think there were some obituaries being mentally written at that point. But dammit, this was a VA hospital and I felt like cussin’ like a sailor, although admittedly, I really don’t have much of a potty mouth. This was one of those occasions my mom let the “F” bomb drop once we were on our way out to the car. I think I was in too much shock to let anything out.

A lot has transpired since that day. I’m past the 90-day mark that the doc told me would be my life expectancy if I didn’t get the chemo rolling and now still in the queue for a bone marrow donor. The transplant is a daunting procedure that will knock me for a loop, but I’ve spoken with a number of people who have been through it and are thriving now. The Leukemia-Lymphoma Society set me up to talk with a couple of guys who are survivors, one an eight-year survivor and the other a six-year survivor and I know personally two people who are about a year past their transplant dates. The common thread is that they’re alive and doing well. And that’s where my sights are set.

I harbor no illusions about sailing through it like I have the consolidation chemo treatments, but I’m hopeful it’s not as bad as I have shaped the process in my mind. I think we all tend to do that.  We build up this bogey man in our mind of what something is going to be and we live in that illusion of fear. Sometimes it’s downright debilitating. For me, I can’t tell you how many times I’ve built up the monster of an experience and while the actual event is not really pleasant, it wasn’t what I had imagined. I get through it and wonder why I had turned it into such a big deal. I can be my own worst enemy as I suspect we all can from time to time.

I think that’s why it’s so important to talk things out with others who have actually been through what’s in front of us. They not only help us navigate the mine field of our imagination, they can provide the real comfort we need. Cancer isn’t something any of us should fear. There are things we all can do to live a healthier lifestyle, but I’m living proof that even a healthy lifestyle of daily exercise and a decent diet isn’t going to deter this and I can’t say that genetics played a factor in my case. Everyone in my family lives to be pretty ancient and self-sufficient. Cancer just happens. When I’m on the other side of this, I’ll continue my daily exercise and balanced diet.  The “new normal” will certainly entail a bit more vigilance than before, but I’m going to be OK.

And today, I’m not afraid of tomorrow.  Yup, I’m a bit intimidated about the bone marrow transplant procedure as I do have this allergy to pain, but don’t we all? Actually, I have a relatively high threshold of pain, but I don’t like pushing it any more than the next guy. Truth be told, I’m really getting pretty tired of the needles. Maybe I shouldn’t have watched the Frontline presentation: Facing Death. That’s a laugh a minute, especially since two of the people they featured were dealing with failed bone marrow transplants. Actually, I watched it because of how I see death now. I’m not expecting to die, but I do have to face that eventuality and its possibility, no matter how unlikely, in my treatment. If I can face that ultimate fear, then everything else is pretty much gravy, right? (Nod your head here in agreement).

There are a lot of things in life that elicit fear – and I’m not talking about spiders, snakes, and small spaces. Watch TV for even 30 minutes and pay attention to the language: everyone’s trying to scare us into doing something. Advertisers want us to buy their product or else… and then there’s the danger lurking in our very own kitchen cabinets, details at 6:00… or the other political party is downright unpatriotic and dismantling our freedoms… or it’s just not safe to go to the (you fill in the blank). And the list goes on and on. We give these people even a moment of our attention and we feel threatened and moved to action as our fight-or-flight instinct kicks in.  Our blood pressure rises and we ask our doctor if this medication is right for us and we lock our doors, turn on our security system and become a high-strung hermit that has been scared right out of life, liberty, and the pursuit of happiness by the same system that was created by those noble ideals.

So…stop it!

Stop living in fear. Some of us will have bad things happen to us for no reason that makes sense. Some of us will have our houses burn down because of something that no one could have foreseen; some of us will lose loved ones to circumstances we couldn’t have imagined…and yes, some of us will get cancer. But we can’t live like we’re going to lose it all, but rather, may I suggest making the most of the life you have with those that mean the most to you…and that includes *you* today. And take care of yourself now and say the things you have in your heart to that special someone before you talk yourself out of it. Live your life with gusto and intention and make your decisions devoid of fear. Absolutely, weigh your options and consider the consequences, but don’t *not* do something out of fear.

Music for today - These Times by Safetysuit

 

These times will try hard to define me
And I'll try to hold my head up high
But I've seen despair here from the inside
And it's got a one track mind

And I have this feeling in my gut now
And I don't know what it is I'll find
Does anybody ever feel like,
You're always one step behind?

Now I'm sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will

And I know there's someone out there somewhere
Who has it much worse than I do
But I have a dream inside, a perfect life
I'd give anything just to work
It's like I'm only tryin’ to dig my way out
Of all these thing I can't
And I am
Sitting alone here in my bed

I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass,
They will pass
They will pass
These times are hard
But they will

These times will try hard to define me
But I will hold my head up high
Sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass

And I know there's a reason
I just keep hoping it won’t be long ‘til I see it
And maybe if we throw up our hands and believe it!
I'm telling you these times are hard
But they will pass
They will pass
They will pass
These times are hard
But they will pass

Talk Amongst Yourselves. I’ll Give You a Topic

No doubt, you, like I, have friends who are, shall we say, a touch indiscreet in how much of their personal life they ‘share’ with people. There’s some sort of need within all of us to vent, to talk about our problems, or more often than not, other people’s problems. As long as you include something like bless her heart, it’s OK, because you’re showing concern, right? Some of us just don't see any boundaries and then there are others who just bottle it up. Until recently, I fell into the latter category...where I am now is a matter of conjecture, but talking things out within reason has been a therapeutic thing. For those in the former category, Facebook is just the latest iteration of on-line over-share and anti-social behavior. About 20 years ago, electronic bulletin boards and chat rooms were the breeding ground of some pretty heated, juvenile arguments and sharing of information that would be clearly inappropriate in-person. Of course, the more things change, the more they stay the same.  I saw a particularly childish exchange over something really petty yesterday. Alas, some of us humans will forever be perpetual drama magnets.

Prior to our electronic presence, we all had our own venues of social networking captured forever à la Norman Rockwell. It seems to me that these places all centered on hair. Stay with me on this one.  Women shared the latest gossip at the beauty parlor and men gathered at the corner barber shop with the newspaper to do the same thing under some other more masculine sounding auspices. So, where does the guy who loses his hair to toxic chemical goodness go? You go to places where others who are rockin’ the cue ball do, right? Yes. So, that’s just what I did. UCAN (Utah Cancer Action Network) put on a little get-together, complete with a really nice breakfast and even some cool door prizes. I actually won not one, but two door prizes, which is nothing short of amazing for me, because I never win these kinds of things (OK, there was that time I won some lenses from my Minneapolis optometrist...way cool!).  I usually smile at the lucky winners with just a touch of envy because I want that thing I don’t really need, but want to win. You know you do, too...be careful what you ask for, grasshoppa!

So, I won a haircut at what appears to be a swanky salon! OK, back up a few steps and remember my hair fell out thanks to a particular brand of toxic chemical goodness nicknamed The Red Devil (aka Idarubicin). Oh, the irony!

Suffice it to say, being the gentleman that I am, I stood with a smile and removed my English driver’s cap in salute and thanks to accept the kind gift. The room, seeing my nearly bald pate, erupted in laughter. There is no expiration date, so I will get that haircut as my hair is coming back in, despite the assurance of my hem/onc fellow, ever encouraging soul that she is, that it will fall out again! When I won the second gift, there was a low rumbling murmur across the room to see if it was something equally ironic, but alas, it was a really nice blanket.

What was really great about this function was that it removed several layers of small talk and allowed us to get to what we all needed to get off of our mental plates, and trust me, just the word cancer adds a heapin’ helpin’ of hard-to-digest goodies on that plate. That’s before you put a name to the type and stage and then there's the treatment. Deep breath...we can do this. What a group like this does is take a good amount of that hard-to-digest off of the plate with a little word: hope. It also by-passes the TMI (too much information) filter because we already know the awful details...and can generally laugh at them or collectively roll our eyes! No gossip here, we've all been there. Empathy truly abounds!

And the people that put the function on drove that point home both in allowing us all to talk in groups about physical, mental/emotional, and recreational needs. In more than talking, there were resource and advocacy groups as well as some service providers specific to cancer patients and survivors. When all was said and done, we all tied a little token embossed with the word hope on it with a ribbon and attaching it to a single dahlia bloom and then gave the plant to someone else as if to say, I’m giving you hope. It was more than just a gesture because in a real sense, the people there were making it. They were surviving and thriving and contributing. And they were happy and smiling and living decades after being diagnosed with stage IV cancers. Many conversations that used to include the words, get your affairs in order, are becoming more hopeful and providing new options for treatments and clinical trials.

Make no mistake, cancer is still a killer, but we’re making significant progress. I’m convinced the reason that we are moving forward so deliberately is because we’re no longer silent about it. We’re demanding to know how to fight this monster and we’re funding research and we’re winning!

And we need to keep moving forward. To put this in perspective, a 2012 American Cancer Society report projected 1.6 million new cases of cancer to be diagnosed last year; some 577,000 deaths were expected based on trends. When I was waiting for my blood test yesterday, I saw an article in Time about cancer research that indicated that 1 in every 2 men and 1 in every 3 women will be affected by cancer in their lifetime. That’s pretty sobering, but again, makes the point a bit more urgent to keep the research on the fast track…and we need to keep talking about it – lifestyle choices to reduce our chances of getting it or surviving it if there are factors outside our control like genetics.

I’ve felt the need to talk with other leukemia survivors because despite how good I’m feeling, I know that I’m far from being out of the woods at this point and have a rather long road to recovery ahead of me. Everyone is different in how well we tolerate treatment. Some people get horribly ill and others seem to sail right through. So, while there’s a basic course to the regimen, there is a bit of an art as each body reacts accordingly. The Leukemia-Lymphoma Society connected me with one such survivor who has been free of leukemia for nearly a decade since transplant, giving me yet more reason to hope.

The other common thread I’m seeing in talking with survivors is that this is very much a long-term illness and the people that are standing with me for the long-haul are truly more than fair weather friends. Actually, the kind of people that hang tough with you when the going gets this tough are the color picture in the dictionary next to the entry for friend. For those of you who have stuck with me from day 1, thank you for being a friend, a real friend, and letting me talk…amongst you! I’m no longer feeling verklempt!

Sounds like a great segue for today’s music Thank You For Being a Friend by Andrew Gold

Thank you for being a friend
Traveled down the road and back again
your heart is true you're a pal and a confidant

I'm not ashamed to say
I hope it always will stay this way
My hat is off, won't you stand up and take a bow

And if you threw a party
Invited everyone you knew
You would see, the biggest gift would be from me
and the card attached would say,
Thank you for being a friend

Thank you for being a friend
Thank you for being a friend
Thank you for being a friend

If it's a car you lack
I'd surely buy you a Cadillac
Whatever you need, anytime of the day or night

I'm not ashamed to say
I hope it always will stay this way
My hat is off, won't you stand up and take a bow

And when we both get older
With walking canes and hair of gray
Have no fear, even though it's hard to hear
I will stand real close and say,
Thank you for being a friend

And when we die and float away

Into the night, the Milky Way

You'll hear me call, as we ascend

I'll see you there, then once again

Thank you for being a friend

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

Q & A, the Name Game, and Dancing into the New Normal

Today started out as one of those medically boring days, but at as the sun was setting, things got a bit exciting. I have made it a point to learn everyone’s name who comes into the room and takes care of me from those wearing white coats to the nurses and med techs to those who bring me my meals and empty the trash. I try to learn them all. Well, that good deed did not go unpunished today. While watching a DVD early this evening, a VA police officer opened the door and asked for me by name. Knowing who I am isn’t too terribly hard since I have a placard outside my door with my name emblazoned on it as well as a beautiful wrist band that I was warned I should shred when finished with it since it has my social security number on it. The officer asked me if I saw who it was who emptied the “sharps” bin today. My point in learning people’s names is to write a glowing letter of thanks to the VA for the wonderful care I’ve received since being here. Little did I imagine that the one who was emptying the trash was also salvaging the drugs out of the syringes and using or selling them.

My room is right next to the stairwell at the end of the hallway and most all of the medical staff comes in and leaves via those stairs and that’s how I found out that my remembering names was the key to quickly solving this problem. One of the techs came by and thanked me for positively identifying the person. Apparently this has been going on for some time and it doesn’t take a medical professional to tell you just how dangerous what this person was doing really is. I have to assume that this person is no longer employed, but may also be facing charges.

Maybe my good deed du jour was why there was a cookie on my food tray tonight. Nah, I bet everyone got one. Besides, the frequent fliers get the cookies when they arrive and they’re fresh, hot, and totally fattening! Anyway, I got my sugar buzz courtesy of my ma who brought a really good brownie in from her latest foray to Wendover, Nevada. With a little black coffee, it made for a great afternoon treat.

Learning the names of doctors has proven challenging because they typically rotate through different departments. This is compounded because there are two teams of doctors who attend me. There are the hem/onc (hematology / oncology) doctors which specialize in the treatment of the blood cancers and there is the medicine team, which is the group of doctors that administers what you might consider routine. They consult with the hem/onc doctors to make sure their treatment is consistent and they carry out the chemo orders prescribed as well. At least that’s my understanding of how the two groups work together.  The hem/onc doctors hold clinic at the VA on given days and then there are fellows who rotate through the Huntsman Cancer Center and other outpatient clinics as well as the VA on a monthly basis, so I’m actually on my third hem/onc fellow while the main doctor is the same one overseeing my treatment, oddly called “salvage.” The medicine group also rotates through but on different time schedules, so I’m on my third medicine team as well. The medicine team more closely resembles what you might see on “Gray’s Anatomy” where there is an attending physician, a resident, and a gaggle of interns, all taking notes and paying close attention. I probably don’t make it easy on them because I’m playing class clown and it’s this group who was entertained by my crass t-shirt and ‘no hair day’ beanie. Once I turned the subject to medical details, it was obviously a different story and it showed that the class clown was also paying close attention to what they were doing, even though my results were pretty low-key.

I used my one-on-one time with my hem/onc fellow today to drill him on specific questions I had. Trying to get information on the Internet, even from the most reliable sources, tends to be rather noncommittal and doesn’t address the kinds of questions I have.  I had also been visiting the Leukemia-Lymphoma Society bulletin boards and finding that the questions and answers there were typically geared toward children and more elderly patients. Much of what I read focused on relapse as well, which gave me a whole new line of questions to ask. Last week, I found out that the particular strain of leukemia that I was diagnosed with was referred to as “M5B.” This “staging” of my particular cancer has more to do with how well cells mature from my bone marrow than any severity of the disease. This was a relief as I had been thinking that the higher the number, the worse things were as it is with cancers with physical tumors associated with them. With the exception of the M3, they're all treated the same at the onset with rare exception. I also prodded him about prognosis, but he explained in a bit more detail than I got last week with my other hem/onc doctor that it comes down to how well my transplant goes and the reason that I had to get a transplant rather than simply getting chemotherapy since I had normal chromosomes. “Normal” chromosomes don’t make someone either high or low risk of relapse after induction chemo, but there are two additional mutational tests that are run in conjunction with the initial biopsy. One of these mutation tests made me low risk, but the other test came back positive and offset the first and indicated that without a marrow transplant, the leukemia would certainly come back.

So, on to the transplant. Once that happens, there will be inevitable graph versus host issues and that’s important.  The severity of that is staged on a scale of 1 to 4. With no graph versus host (GVH) issues, it is likely that the leukemia will recur; on the other hand, a severe case isn’t something we want either, but it does indicate that the new immune system is aggressively attacking the leukemia and of course, that is a good thing, so the hope is that there is a moderate degree of GVH. My big question had more to do with restrictions after getting back from the transplant and the good news is that my “new normal” is simply a matter of maintaining a frequent flier status with doctors and hospitals, but this kind of interaction wouldn’t be a lot of inpatient like it is now. It would also make it easy to see if there was a relapse very early and come up with a different treatment regimen quickly. As for getting physically active and traveling and doing the things I wanted to do, no restrictions. And that, my dear readers, was what I really needed to hear today!

So, we move toward getting this transplant done and getting to the new normal. You all know I have places to go, people to see, and I do have some perfect moments to discover!

My music selection for the day is Lee Ann Womack’s I Hope You Dance. I chose it as a nod toward a friend of mine who is on the downside of his own battle with AML.  He is my daughter’s father in-law and although admittedly cancer sucks, for him it was well...a dance!

I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance

I hope you dance
I hope you dance

A Day Without Rain

Utah is an arid state.  We have some of the most beautiful red rock deserts and the winter snow is the most powdery in the world (in my humble opinion...and that of the chamber of commerce).  The “greatest snow on earth” isn’t just a nice tag line for our license plates, it’s enough to get a certain circus upset at us because it sounds a bit close to another famous tag line!  The arid climate that produces the world famous powder has another effect in that we don’t get a lot of rain, so there are numerous reservoirs around the state to ensure we have adequate water. Back in 1983, there was so much snowpack in the mountains around Salt Lake City and so much rain in the springtime that the flood waters were diverted into some of the city streets. The Great Salt Lake got really close to the airport as it had no place to go. That is, after all, why it’s so salty. Despite the floods, enterprising people made the most of the flood and I can remember a picture in the newspaper of one restaurant with a sign, “you catch it, we cook it” on State Street, Salt Lake’s main drag.

State Street, Salt Lake City in 1983

I’m not really writing about water, but I use the picture to illustrate a day in the life, so to speak. I tend to be able to hold a lot in. Not much fazes me and it takes a lot to get me riled. Once I am, it takes a while to calm back down. If you treat each  of these trials or inconveniences I face in working through cancer as a rainstorm, you might say I’m very much like one of these larger reservoirs. It accumulates and it evaporates or flows downstream over time.  Not a big deal. The problem is that there are a lot of rainstorms lately and I’m finding that the reservoir is rather full and it doesn’t take much to overflow at this point.

And this week has felt like the times that “try men’s souls,” well at least my soul. And like the illustration above, it’s not that there has been one particular thing that has beaten me down, it’s just that there’s a lot coming hard and fast.

In talking with my hem/onc this morning, I don’t feel as restricted as I did, but there seems to be less certainty of anything. This is more about the art than the science because the lynch pin in treatment is the transplant, which is something, by his own admission, where he's not an expert. That expertise resides in Seattle. So, if it works as planned, then all the great statistics prove true and everyone will be clinking their glasses together with big smiles, myself the biggest of them all! Between here and the toasting is a series of big question marks. Part of it is timing, part of it is identifying a willing donor with as many matching HLA markers as possible, part of it is how my body responds to the new stem cells, and part of it is just plain dumb luck.

It’s difficult to comprehend this all in reality, not because it’s unknown, but because there are several uknowns. Yet, despite the stark language of lab reports, the non-committal verbiage of the reference materials, there are many, many survivors. And this is the silver lining to that big rain cloud: I seem to be coming across a lot of them lately, some of whom I didn’t realize were in my new exclusive club. And it’s not that I couldn’t talk with friends and family, but there’s only so far you can go with someone who hasn’t been where you are. And that’s a difficult place to be because you want to badly to be able to pull the closest people to you into that inner sanctum, but you don’t want them to have to go through what you are in order to understand it. Yet that is sometimes the only way to relate what’s going on in your chemo-brain addled, emotionally fragile, frightened mind! But neither would I consider paying someone to be my best friend, even if it were covered by insurance. Only someone who has walked a mile in these shoes can fully comprehend what it is that I’m feeling…and for me, face-to-face is the only way to communicate that much-needed depth.

The VP of business development where I work connected me with someone who has been in remission for about a year. I spoke with him this morning before my doctor’s appointment. The ease at which the conversation flowed reinforced that need and I will have someone I can talk with locally. When I checked in for my appointment, the nurse who took my vitals and I struck up a conversation and instead of the 5-minute perfunctory exercise in numbers, we chatted for almost 20 minutes and ended up crying and hugging each other as she was a survivor since 1992. Just before the doctor came in for my appointment, another nurse who was with me the day I received my diagnosis gave me a huge listing of resources from the Leukemia-Lymphoma Society. I stopped by their offices because I had an errand nearby and found that they have a program for exactly what I needed – another local leukemia survivor that the LLS matches specifically to me with whom I can just talk. They also listed support groups near my home.

For me, the flood waters aren’t extreme, but I’m still doing my best to be enterprising and positive (although I'm not cooking your fish...I'll help you eat it if it's a particular geometric shape though and dipped in beer batter). Again, that’s how I’m wired, but it’s a long rainy season ahead from everything I see. You can be assured that the jokes, the smiles, and the positive, if not offbeat, attitude will still be there amid the rainstorms, but if you’ve ever been caught in a cold rain, you know how miserable it can get…and how really comforting it is to be taken in to be dried off and warmed up. I can’t thank enough those of you who have opened your hearts and made a place by the fire for me. OK, so I mixed my metaphors a bit, but the point remains that this is tough, it’s going to be a long haul, but your continued love and support will make it bearable.

Today's music - Enya's "A Day Without Rain"

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

Bravery | Bravado

If you’ve read any of my previous postings, you’ve no doubt picked up that my outlook is pretty positive.  I try not to sugar coat things. After all, especially since becoming an unwilling member of the leukemia club, I have had some pretty challenging days, but in spite of them, I still tend to be one of those infernal glass-half-full kinda guys.  It’s just how I’m wired. It’s how I roll, even off a bicycle!

As an unapologetic optimist, there are a lot of things I won’t do:

• I won’t hide the fact that I have leukemia. It’s a type of cancer and while I won’t intentionally play on people’s sympathy because of this particularly bad hand I’ve been dealt, neither will I not say the word, “cancer” as if it doesn’t exist. I will face this thing head on and deal with it.
• I won’t pretend to be happy when I’m not. There are days I just feel lousy, sick, tired (and yes, sick and tired of this whole experience), frustrated, impatient, and weepy for no reason. I think after all these years, I understand PMS! I will do my best to stay optimistic, friendly, and keep the puns, jokes, and an edge of attitude coming.
• I won’t be evasive because a procedure is uncomfortable or downright painful; nor will I not disclose a symptom that it could land me in the hospital instead of my own comfy bed. I’m positively paranoid about my health now and I’d rather have a contest of TMI with the doctor than end up in the ER for being stoopid!
• I won’t forget to show genuine gratitude to the people who have been there from the moment of my diagnosis to tucking me in with a warm blanket during a particularly emotional meltdown, to the ones that bring me my meals or empty my trash, to the one that helps me in through my front door when this is all done.

This roller coaster of a journey is damned hard, it’s scary, and it’s not something that can be done alone.

The common thread in all this is simply one of being honest – honest with the medical staff, honest with those who are taking care of me (especially when I cannot care for myself), and of course, honest with myself. Being honest at this level is more than not rounding up on your 1040 or selectively telling the truth where it might be a bit uncomfortable, nor is it something that is that annoying kind that demands driving 30 minutes back to the store to return the pack of gum your kid innocently walked out with. This is something that is authentic and requires something most people don’t understand in today’s culture. It requires bravery.

I don’t want to confuse bravery with bravado.  Bravado is something we all see and find rather amusing on the surface, but really at its heart, distasteful. It’s just a show and it’s loud and abrasive. It’s the trash talk before the fight. It’s the self-righteous sound bite from an uninformed citizen who clearly isn’t thinking and is just repeating someone else’s drivel. Bravado is essentially another form of dishonesty. Bravery, on the other hand is, more often than not, subtle and quiet, yet incredibly potent and has the potential to make big changes. It’s like the picture that takes your breath away, worth several thousand words! When you see bravery, you know it even if you didn’t think it was ever there. It’s the kind of thing martyrs don’t realize they have until they are looking into the whites of death’s eyes.

And bravery is something I feel I sorely need as I prepare for this bone marrow transplant. I’ve spoken to a lot of people about this and I’m going in with eyes wide open, so it’s not so much the fear of the unknown as much as it’s now getting very, very real.

I received the official approval letter from the VA in Seattle along with a phone call from the transplant coordinator there. The search for the donor is underway and the next phase of my treatment could happen in a few weeks or a few months. Because of my good physical condition, I will be getting a full transplant or what the very intimidating literature calls a “matched, unrelated myeloblative transplant.” The web site is very thorough as is the book that I received in the mail in explaining things.  It’s actually a bit overwhelming. Up to this point, I’ve been told things piece-meal as new developments in my condition arise. Thankfully, my face-to-face meetings with people to discuss the transplant procedure have been far less daunting and just like the VA here in Salt Lake City, the only thing I’ve heard about the people in Seattle is the incredible level of expertise and once again their level of compassion. I don’t think you could ask for a better combination when it comes to the people who will work their medical magic and vanquish the leukemia from my mortal shell!

That said, it’s still a pretty damned scary prospect and while I’m not necessarily looking at the whites of death’s eyes, the abbreviation TRM (treatment-related mortality) has become part of my reading and of course, that drives the point home, doesn’t it. I’ve said before that I have no plans on checking out and the odds really are against me losing this battle, but repeating what I said above in this post, I am facing this and dealing with it head-on…even if my hands are shaking and my voice is quavering. Others have defeated the cancer monster and I’m going to be one of them. I just have to follow in their footsteps…and I have to be brave.

So, appropriately enough, this is today’s music from Josh Groban - Brave

You wanna run away, run away and you say that it can’t be so.
You wanna run away, run away and you say that it can’t be so.
When you stand up and hold out your hand
In the face of what I don’t understand
My reason to be brave.

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