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

A Day in the Life

When I got my diagnosis, I really couldn’t wrap my head around what leukemia was. I had no idea that it was a blood cancer, and I certainly had no idea that treating this bastard was such a long-term affair.  There have been of myriad of complicated, interrelated details that boggle the imagination, literally hundreds of medical and support staff rotating from one organization (within the VA system and other institutions), thousands of shiny, jagged pills, IVs, syringes, scans, probes, swabs, tests, biopsies, consults, and so much more. How does anyone keep track of it all? The simple answer is not that I have to rise to the occasion, but rather work together with them all and my caregiving team to make it work.  No one can do this solo. Just ain’t no way, my friend!

I thought what I’d do today is give you a guided tour of what a routine day is like to give you an idea of all the people involved as well as some context of what life is like. It’s very much like an inpatient day except that I get to leave when the doctors give me the OK that I’m still healthy and self-sufficient to be an outpatient at the end of each day. It’s obviously a big bonus for the little things like choosing what kind of food you want to eat, sleeping in a bed that is more comfortable and not getting awakened or interrupted by someone wanting to poke, prod, or otherwise molest you at any given hour! Yeah, big bonus there. Remember, I have a great soft spot for nurses, but checking my vitals at 1:00 a.m. when I’m actually sleeping? Ah, yeah, those were the days…and hopefully not to be repeated any time soon.

The bone marrow transplant process is nothing short of a chemical miracle in my mind. It’s hard for me to really grasp the significance of this little bag of someone else’s stem cells being infused into my arm being fruitful and multiplying into enough of a life-saving force to engraft to my own body and be formidable enough to fight off any remaining leukemia that might be in my system after that lovely toxic chemical goodness has done its good and perfect work on decimating my own immune system…yet it is and it has! It is a truly drastic and extreme life-saving measure and as I was told before I got here, I would be taken to death’s door and brought back. Once again, I was quite literally there and I’m back and working through the process toward restoration and healing. 

The transplant process here has a rough timeline that takes about 100 days, some more, some less depending on how one’s body reacts to all the pharmacopeia and of course the transplant itself – and there is a whole mess of it every day to keep on top of. Day 1 is actually the day one receives the stem cells even though the treatment begins before getting them.  There are variations on the transplant depending on who provides the stem cells. An “autologous” transplant, for example is where the patient provides his or her own stem cells for later use while those like me who needed a donor receive an “allogeneic” transplant. Then there are two subsets of each of these – a mini or a full myeloablative transplant. I had “the full monty” as people were calling it because of my younger age and ability to withstand the more arduous process. Trust me, it was indeed an arse-kicker, but there should be fewer complications down the line and I skirted the one key part of treatment that I just couldn’t reconcile: total body irradiation.
 
So, 42 days of inpatient fun later, I was discharged to be on outpatient treatment. What, you may ask, do I do during these days post-transplant at the hospital each day? Let’s begin with my virtual tour from the fabulous Marriott Towneplace Suites in Renton, WA! The VA puts my sons and me up in a two-bedroom suite with a small kitchenette. It’s a comfortable space and the people here have taken good care of us, but you all know we’d rather be home…not a bad home away from home considering the circumstances.



I have always been squeamish about self-injections, but thanks to the high-dose steroids, my blood sugar is off the charts. So, four times a day, I have to check my blood sugar and inject myself on a sliding scale of insulin just like someone with diabetes.  My stomach isn't so pretty right now and for all the effort I have put in to trying to flatten my gut out, I'm actually rather grateful to have a bit of belly fat right now!  This is a temporary thing, thankfully, and as the steroids are tapering off, this will go away as well.  For the time, it's part of my daily regimen.

 

My day starts with taking care of one of the side effects of the high dose of steroids I’ve been prescribed – monitoring and correcting for high blood sugar. And no, dear ones, they’re not that kind of steroids.  If anything, they do the exact opposite and are eating away my muscle so I have to be mindful to be active. Someone had posted on my Facebook page that with all the weight I was losing and the steroids, I'd be ripped when I came back.  I can only wish.  But, in my case, just like a diabetic, I get to inject myself with insulin four times a day as the steroids throw my blood sugar through the roof. Before treatment, my blood glucose levels were absolutely normal. For now, I get to poke my fingers to test for blood sugar levels and then based on how high the numbers are inject myself with the appropriate amount of insulin before each meal and before bed. Lovely way to start the day, huh? I also check my blood pressure and temperature and I’m eating quite a bit differently than I might have otherwise. This is truly an education in nutrition and self-control as well as the medical side of things as we go along.

 

Yup...it's a typical Seattle morning - rainy and / or foggy! Our commute route takes us past one of the many, many, many Starbuck's shops. Austin, my chauffeur, knows them all and not so surprisingly, they know him!

 

 

 

 From the front of the Seattle VA Hospital - As much time as I spend here, it feels like home away from home...except that it isn't. It's actually quite the sprawling complex behind this façade.
 

After a quick shower, I run over to our hotel continental breakfast and grab a quick bite and take about 20 different pills for various things including liver, kidney, electrolyte, and immuno-suppressant functions. Anti-rejection drugs come along later in the day after my blood draw at the hospital.

Off to the hospital in the characteristic rain and we are typically on the surface route instead of the Interstate. The traffic going toward the city isn’t unlike my memories of SoCal, but not quite as many lanes to accommodate all the many cars.  I won’t take the time to criticize Seattle drivers, but I will say they’re a lot nicer face-to-face. Let’s leave it at that.


At the hospital, it’s back to the Bone Marrow Transplant Unit where it feels like a family and Cheers where everybody knows your name. There, we take our turns in the outpatient room, getting our routine blood draws and the IVs that are on our treatment plan. In the picture here, I’m getting my PICC line dressing changed. That’s a weekly occurrence, but it’s painless and it keeps me from getting stuck with a regular IV needle every time I come in, so while it really hurt going in, it has saved me a huge amount of discomfort over the months in getting blood draws and IVs otherwise.  Other patients get something called a Hickman port which is essentially the same thing I have except it is installed over the chest and has three “lumens” or ports instead of my two. Since I was an allogeneic patient, I didn’t need the Hickman. The amount of time we spend in the outpatient room can vary on the number of different treatments we need during the day. For me, it’s routinely two hour-long IVs, the blood draw, and occasionally, I get something else. By the time I’m done, it’s about noon.  The lab turns around the blood chemistry results pretty quickly and we’ve all been taught what to look for.



This is the Bone Marrow Transplant Unit where it all happens - 4th floor. Behind the doors to the left is the ultra-sterile environment where I lived in a fishbowl for 7 weeks (less my two unplanned excursions to the MICU) and where I go each day for my outpatient visits.



There are four of these comfy chairs that recline while we get our IVs (could be any number of things. Some patients get chemo, but since I had a full myeloablative transplant, I'm very much finished with chemo (the crowd roars ... or at least I do!) typically get a daily antibiotic and antifungal. Here, my nurse is doing a weekly PICC line dressing change.

During this time as well, and more to the point of why we come in each day is to see the attending physician and his coterie to again, make sure I’m on the up-and-up and moving along according to plan. These visits are essentially identical to ‘rounds’ that these same doctors do if I were inpatient. He has with him, the most current hem/onc fellow, a staff pharmacist, the outpatient nurse, nutritionist, and a few others that don’t identify themselves.  They pepper me with questions on how I’m doing, check my mouth for sores, listen to my lungs, check for edema in my legs, and make some small talk. At this point, it feels very cordial, but it’s not unusual after these sessions to get a call to adjust medication by a little bit or to get additional appointments to ensure peripheral issues aren’t surfacing. They also interface with other departments to ensure everyone is on the same page. It’s actually pretty amazing all that happens between everyone.

At some point during this process, I get “discharged” to go home again. There’s a collective sigh and exodus by all of us outpatients when it happens as it is a legal sort of thing. If we leave early, it’s essentially something called “AMA” (against medical advice) which is obviously rather serious for a cancer patient under active treatment and everyone gets their hand slapped rather hard. It’s not unusual for us to be held back awaiting medication changes, so we’ve waited several hours. Hey, I’m not sleeping there, so I’m quite all right with it. I try to see others while I’m there to make the best use of our time.  They also have a cantina in the basement that makes some pretty good sandwiches for cheap. My son and I have found them to be excellent!

If we can get back on the road by 3:00, we can make it back to our hotel room in decent time without the traffic and will find some way to get out and exercise, even if it’s to walk the mall. Seattle really is a rainy place and I’m cognizant of the sunlight restrictions, so the mall is a good place to get some walking in, at least during the week days.  My immune system is such that I need to avoid large crowds, so the weekend when the mall is crowded can be problematic for me.

Evenings are spent with my two sons, although we often tend to be three bachelors in the same room. We are all electronically engaged, but somehow in the moment together. I’ve been trying to make sure we do *something* together each night while I’m connected to my evening IV. We have a completely stocked nurse’s station that has occupied the kitchen table in our apartment as you can see in the photo, replete with three separate IV pumps, syringes for insulin, chemo-safe gloves, saline flush syringes, and a panoply of meds to keep my monster box of pills fully stocked. The fun just never ends…but then again, that’s why we’re here.

Behold the Nurse's Station replete with IV pumps, monster pill box, chemo safe gloves, syringes for all occasions, alcohol wipes, and a stack of documentation to tell us every possible side effect there is on all he meds.
 

Somewhere along the way, I start to crash, so I give myself my final injection for the evening and get into bed, only to sleep for about 3 hours at which time I find myself reading for another few hours and try one more time to get a bit of a nap in before starting over. 

It’s a highly-regimented day, so you can imagine how a ‘normal’ day will feel…mostly because you’re living it. We’re about halfway through the 100-day cycle and hope that when December 2 rolls around that the car is headed eastward on dry roads back to Salt Lake with some happy guys singing campfire songs (or at least along to the stereo!), so think happy thoughts about my treatment that it continues to go well and without any hitches along the way. We’ve had enough to last a lifetime!
So for now, one day at a time…hope you enjoyed my abbreviated (even though this was a bit long today) virtual tour of what I’m doing these days.

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

Music for today – Home Life by John Mayer

I think I'm gonna stay home
Have myself a home life
Sitting in the slow-mo
And listening to the daylight
I am not a nomad
I am not a rocket man
I was born a house cat
By the slight of my mother's hand

I think I'm gonna stay home

I want to live in the center of a circle
I want to live on the side of a square
I used to be in my M-Z now
You'll never find me cause my name isn't there

Home life
Been holding out for a home life
My whole life

I want to see the end game
I want to learn her last name
Finish on a Friday
And sit in traffic on the highway
See, I refuse to believe
That my life's gonna be
Just some string of incompletes
Never to lead me to anything remotely close to home life

Been holding out for a home life
My whole life

I can tell you this much
I will marry just once
And if it doesn't work out
Give her half of my stuff
It's fine with me
We said eternity
And I will go to my grave
With the life that I gave
Not just some melody line
On a radio wave
It dissipates
And soon evaporates
But home life doesn't change

I want to live in the center of a circle
I want to live on the side of a square
I'd love to walk to where we can both talk but
I've got to leave you cause my ride is here

Home life
You keep the home life
You take the home life
I'll come back for the home life
I promise

 

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.

 

Gratitude – Family and Friends

I think it’s fair to say that a stare-down with your impending demise will bring out some stark honesty in facing who you are. I’d like to think that the disparity in who I think I am and this brutally high-res reflection in the eyes of death isn’t too far off, but who am I to gage? What I can tell you is that the kinds of things that have come out of my mouth when I’ve been at my weakest and most vulnerable haven’t been too terribly embarrassing or compromising, at least from what people have told me. It has been mostly ordinary and routine stuff. with an occasional venture into the non sequitur thanks to the lovely pharmacopeia coursing through my wasted veins. Not too terribly surprising. It’s good to know there’s nothing to hide, no deathbed confessions to get off my chest, and no buried treasure to pursue...nor any money hidden between the mattresses (sorry, kiddos!).
 
If anything, I’ve found myself tearing up a lot in gratitude to people, about reaffirming my deep-seated values and letting people know how much they mean to me, whether it has been someone taking care of me in scrubs or in civvies or simply keeping the fires of friendship and kinship alive.  Perhaps I talk about things, maybe a touch more freely and personal that I probably would otherwise, but I hope it's not uncomfortable for others. It’s like a brick to the back of the head. I never feel the tears coming. I’m smiling and talking about something perfectly ordinary and the next thing I know I get that catch in my throat and the waterworks come on like one of those programmed sprinkler systems. No rhyme or reason. It just happens. It’s probably a bit therapeutic for this staid former naval officer who was taught to compartmentalize feelings to the point of being called, your seriousness.
 
Things are obviously and thankfully different these days!
 
I’ve learned how to let the watertight compartments inside communicate some so I can become the class clown I was in high school. Yes, believe it. Deep down, I’m a cut-up. But in reality, that kind of thing doesn’t happen without people who believe in you, who give you a safe place to be yourself, and who protect you when that weak underbelly is showing. I think that’s why nurses have found their way into my heart as firmly as they have. There’s an innate level of trust based on their profession, but even more so as they do their job and I get to know them on a personal level. What is more to the point on this post are the countless other people – family, friends, and acquaintances who have been rooting in my corner from the time I found out I was part of an exclusive survivor’s club for which I didn’t apply. It's because of you all that I'm more than surviving, I'm thriving and now amount of thanks can really account for the difference. It really is no small thing.
 

Using Facebook as a gage, I have just over 450 ‘friends,’ 21 of which are family. I don’t typically ‘friend’ people I haven’t had some history with, so you can add a bunch of high school and college classmates, cycling buddies and professional colleagues and acquaintances that I actually know and I find my network actually pretty big.  It took the advent of social networking to prove that to me. But it took a life crisis to prove that the phenomenon that includes Facebook, LinkedIn, and other networks of choice actually have some teeth to them. I’ve been amazed by the outpouring of support and actual hands-on care I’ve received, literally from across the globe. It’s nothing short of humbling. Unless you’ve been there, you have no idea how much a kind word or cheer of support goes when you’re laid up in bed feeling as awful as I have. It’s huge. It really is.
 
People that have actually visited me in the hospital or at home when I’ve been convalescing have raised my spirits and kept me upbeat when my energy and enthusiasm have lagged and trust me, as much as I try to keep the humor and smiles, the big "C" has a way of just beating you down and depleting every bit of emotional and physical reserve you have. Again, you make the difference there.

Then there's the element of the human touch. It is totally underestimated. I joked about my first week home in March when I was bundled up, complete with surgical mask. It scared off parents with small children and it protected me in my immuno-suppressed state from getting an unwanted trip to the ER, but being the guy no one wants to touch is wearing. People see the tell-tale bald pate and assume the obvious, but tend to keep away even though cancer is not communicable. Hugs come across as pretty ordinary these days, but they impart so much when people otherwise will keep their distance. Cancer patients may be frail at times, but the ones I come across are pretty damned strong. That said, we all still need you ... and please, yes, we need a hug from time to time. We may be temporarily broken, but we won't break.
 
This has been a roundabout way of thanking you for being you – to give you a little context and for giving in whatever capacity you have. There were a few weeks for me where things were truly touch-and-go and I know a lot of you were sending your close air support as I used to call it (prayer, positive energy, best wishes, etc.). I’m on the mend and getting stronger each day. Even the stairs are coming along…never fast enough for me, but I can’t push this. And as you well know, this is quite the marathon rather than any sprint, so I thank you all the more for sticking with me over the months.
 
Be well, stay strong, and much love to you all.
 
Classic music from the Beatles today - With a Little Help From My Friends
 

 
 
What would you think if I sang out of tune
Would you stand up and walk out on me?
Lend me your ears and I'll sing you a song
And I'll try not to sing out of key
 
Oh, I get by with a little help from my friends
Mmm, I get high with a little help from my friends
Mmm, gonna try with a little help from my friends
 
What do I do when my love is away
Does it worry you to be alone?
How do I feel by the end of the day
Are you sad because you're on your own?
 
No, I get by with a little help from my friends
Mmm, get high with a little help from my friends
Mmm, gonna try with a little help from my friends
 
Do you need anybody?
I need somebody to love
Could it be anybody?
I want somebody to love
 
Would you believe in a love at first sight?
Yes, I'm certain that it happens all the time
What do you see when you turn out the light?
I can't tell you but I know it's mine
 
Oh, I get by with a little help from my friends
Mmm, get high with a little help from my friends
Oh, I'm gonna try with a little help from my friends
 
Do you need anybody?
I just need someone to love
Could it be anybody?
I want somebody to love
 
Oh, I get by with a little help from my friends
Mmm, gonna try with a little help from my friends
Oh, I get high with a little help from my friends
Yes, I get by with a little help from my friends
With a little help from my friends

 

Gratitude - My docs

You can buy "Utah Lottery Tickets" just over the border in Malad, Idaho. That is to say we don’t have one in the Beehive State. Now, there was that little kiosk in the Shell station outside of Seattle where I bought gas last weekend and for the low, low price of $2, I could try my luck at having all my financial woes resolved for life. Once in a while, I'll get a little good luck come my way, but shall we say à la Hunger Games that the odds were not in my favor. Suffice it to say, I didn’t win the lottery last night. Ah well, I and how many other countless millions can rip up our worthless lottery tickets and try, try again, right? 

I will say that my good fortune has paid off handsomely in other places where it really counted – specifically in my medical care. I’ve focused on nurses because they’re the ones to whom I’m closest on a daily basis, but the fact remains that the doctors at the helm in bringing me away from outright dying are nothing short of world class. And that term really isn't exaggeration. Read on, dear one!

But I can’t start there. I have to begin with conscientious basic medicine that found my leukemia to begin with and unlike every other post I’ve written, I want to publicly thank by name those who have been so instrumental in quite literally saving my life and keeping me around to enjoy many years to come.

Set the clock back to December 6, 2012 for a simple blood test that would save me 10% on my health insurance premium at my new job. The screen, I’m sure was set up to encourage people toward healthier choices and to screen for things like high cholesterol. I was in great health, exercising daily, skiing the black diamond slopes, eating well, and losing about a pound a week as a result of my better health choices already, so why not save a little coin in the process? I had also scheduled a routine appointment with the doc at the VA hospital to transfer my records from Long Beach VA to the local Salt Lake City VA. I was able to cut through the bureaucracy finally and see a general practitioner in early January. I met with Dr. Richard Rose who spent nearly 40 minutes one-on-one answering my questions about turning 50 and reviewing in really great detail every health concern I had. How many doctors would do that? When we were about done, I showed him the results of the insurance screening blood test. My cholesterol was actually down 40 points from the last time I had it tested, so I thought I really was moving in a good direction. He looked at it all and agreed I was in a good place.

Except one.

He looked at the white blood count and thought it was a bit high. The Salt Lake Downtown Alliance had a New Year’s celebration over a number of venues within walking distance of my new home and for someone who rarely gets sick, I caught a cold. He thought that may have been the source, but asked that I take a local blood test to be sure. Long story short and five blood tests later, my white count hadn’t changed and he sent me over to hematology. I didn’t make the connection until I got a call asking that I come in for a biopsy.

Biopsies are not a pleasant procedure (you can see pics and read about mine here), but I went through with it and a week later, I met my first oncologist, Dr. Ahmad Halwani from the Huntsman Cancer Institute, who in no uncertain terms told me that I was going nowhere except inpatient for testing in preparation for aggressive chemotherapy to put this thing called acute myeloid leukemia into remission. Was it that bad? Really?  Apparently it was and he was indignant that I would have the unmitigated gall to suggest I garage my car first. He was that concerned about my condition. I actually did take the car home and get some of my own clothing instead of the lovely hospital gowns much to his chagrin!

Over the next four months, I would be overseen by Dr. Halwani and four great fellows – Dr. Shivan Patel, Dr. Danielle Nance, Dr. Zach Reese, and Dr. Tsewang Tashi and a tenacious PA, Tiffany Pyle. I was able to work with these people to keep me out of the hospital between rounds of consolidation chemo. They answered my questions until I got to the point where they ventured into the transplant territory where it was outside their area of expertise. I never felt like I was being snowed by medical jargon or protocol from these doctors, nor did I ever fall under the cloud of the proverbial ‘god complex.’ I got nothing but the utmost professional courtesy and again world-class care. Ironically, these great doctors are referred to as “salvage.” I hardly felt that was the appropriate term.

Then came the call.

In July, I received a call from the Seattle Veterans Hospital that a suitable marrow donor had been identified and the next phase of my treatment would begin. And enter another new staff of doctors to take over where the salvage team had left off. Headed by Dr. Thomas Chauncey, I was not only educated about the process very carefully by Dr. Ed Wu and my most recent fellow, Dr. Melinda Biernacki, I was brought into what felt like a family. The level of care has been even more personal and intense than I underwent in Salt Lake City, gratitude doesn’t begin to describe how I feel. The bone marrow transplant process was actually pioneered in Seattle at the Hutchinson Cancer Center, so again, who could ask for a better team?

There have been a tremendous amount of heroics involved in the medical side of cancer, yet it’s a quiet sort of thing that truly belies the magnitude of the act of saving one person’s life. In reality, it’s not one person’s life a doctor is saving in bringing the cancer to long-term remission, but a family and a network of friends. No doubt, a cancer diagnosis will stop everything in its tracks, but with the able hands and knowledge of a cast of doctors, it only slows and for a time before something almost miraculous occurs and it is as life re-boots. Regardless what label you choose to ascribe to this process, it's awesome.

I’d be remiss in not naming more docs I’ve come across because there are so many others that played into my treatment because of side effects and complications, but the endless trail of white coats of physicians who enter my room, introduce themselves a time or two and leave made it difficult if not impossible to establish a relationship long enough to remember names. With that in mind, let me thank them by what they did and names as I do remember them: MICU, Respiratory and Pulmonary – notably, Dr. Towne, Infectious Diseases, the various Medical Team docs in the SLC VA system – especially, Dr. Amy Osborne. I know there are more.

Thank you all. I only have an idea the kind of long and odd hours a doctor has to put in to be good, let alone world-class. You inspire me to be a better version of myself, even if it’s going to take some time to get back there. Attitude and focus are just the beginning. The journey is far from over, but stopping a moment to take stock of where I've been and to recognize all the incredibly talented and dedicated people that got me here is something I find more than just a little necessary. It’s not the drama of a TV show, but the lives you save are real. Thank you for making me one of them.

Music for today...who else, but the Thompson Twins - Doctor, Doctor!

 

 

I saw you there, just standing there
And I thought I was only dreaming, yeah
I kissed you then, then once again
You said, you would come and dance with me

 

Dance with me, across the sea
And we could feel the motion of a thousand dreams

Doctor, doctor, can't you see, I'm burning, burning?

Oh, doctor, doctor, is this love, I'm feeling

 

Ships at night give such delight

We all leave before the morning light

Please don't go, no please don't go

'Cause I don't want to stay here on my own

 

Oh Oh

 

Doctor, doctor, can't you see, I'm burning, burning?
Oh, doctor, doctor, is this love, I'm feeling?

Doctor, doctor, can't you see, I'm burning, burning?
Oh, doctor, doctor, is this love, I'm feeling?

 

Fever breathe your love on me
(Breathe your love)
Take away my name
(Take away)
Fever lay your hands on me
(Breathe your love)
Never be the same

 

Oh Oh

Doctor, doctor, can't you see, I'm burning, burning?

Oh, doctor, doctor, is this love, I'm feeling?

Doctor, doctor, can't you see, I'm burning, burning?

Oh, doctor, doctor, is this love, I'm feeling?

Come with me and make believe

We can travel to eternity

It’ll Kill Ya

One of the many things that I’ve experienced thanks to my stint in the hospital during this year is a major disruption to what was a solid sleep schedule. Shoot, within a few minutes after pulling the covers up, I was out like a log and woke up a few minutes before my alarm would ever make a peep. It was a beautiful thing. With all the pharmacopeia swimming in my blood now, it’s anyone’s guess when and if I’m going to sleep, so I’ve spent a lot of time staring at the ceiling, reading, dorking around on Facebook, and just plain ruminating in the wee hours of the morning.

Suffice it to say, when you’ve been diagnosed with a fatal illness, your thoughts tend to wander off into territory that was otherwise uncharted before and considered the purview of people like clergy and philosophers. Well, just like foxhole conversions, these kinds of situations turn everyone into metaphysical novitiates of sorts. We all have opinions and I’m no different. It’s just that my opinions were now flavored by real possibility instead of just conjecture and casual conversation or actual study.

I really didn’t even want to go down this street.  I mean, who wants to talk about death seriously? There are a lot of people who talk about death and dying for a lot of different reasons. You obviously have the funeral and end-of-life industry folk who make their living off of this transition and then there are the people who actually are serious in their metaphysical and spiritual in their discussions, and then the people who talk about it as some sort of intellectual topic or ideal. Me? I dunno. I’ve not come to any real conclusion except that I’m at peace with the whole thing. It’s not like I’m ready to go as I’ve written before, but in a sense, I’m OK with it in that I’m not afraid. There is no fear because I was so close to it and didn’t realize it. Maybe there’s the ‘ignorance is bliss’ element to it. I will say up front, the process kind of unnerves me still. I’m really over the pain and discomfort thing as you might imagine.

It’s funny, in a sense, that as we age, there seems to be barely any cognizance of even the concept of death. We’re immortal as youths! Nothing can touch us. The rise of so-called extreme sports is more technological than anything else, but that attitude has been around forever. It’s exhilarating, it’s awesome, it’s amazing…and it challenges death in the face. The degree of difficulty, the bungee jumping, the Red Bull jump from the edge of space and so on thrill us and we see death pushed farther away from us.

And then we get older.

Our hair lines recede, the six-pack ab is relegated to our younger brothers, and the guy we see in the mirror looks more like our dad than ourselves. And…then there are the softball games, nights out steamin’ with the boys, and other things we used to do without thinking that now take a while longer to catch up. That bungee jump is looking more like a mid-life challenge to overcome the mini-van than adrenaline rush now.

You know the drill. We all have our list of things. The real irony for me is that over the past few years, my endurance has shot through the ceiling. I’ve participated in some very long bicycle rides for charity that I don’t think I would have been able to complete as a younger man. And it was at my apex of participating that I was faced with my own mortality: you, son, have acute myeloid leukemia.  You have 90 days to live unless we treat this aggressively.  Yeah, that’ll kill ya.

It wasn’t the short thing I had for cigarettes as an 18 year-old.

It wasn’t the hazardous career I had as a navy pilot.

It wasn’t the high-stress job I had on the road with less-than-optimum nutrition.

It wasn’t the possibility of getting taken out while cycling by some distracted teenager texting on her new iPhone.

It was a totally-out-of-the-blue diagnosis unrelated to anything I could have imagined – leukemia.

So, it’s back to laying in a motorized hospital bed thinking. There are a lot of complications in treating this rather nasty cancer I’ve got. It’s not like I have a tumor that you can feel and that causes pain, but it’s in my blood and is every bit as insidious as a physical tumor – perhaps more so. The chemicals do their job and then there are the side effects to these chemicals that make me feel oh-so-lovely, so I get more chemicals to offset them. I have the mother of all pillboxes to manage them plus a written grid/guide to keep them all well-organized and on-schedule. And I now get to give myself subcutaneous injections to keep my blood sugar leveled out (another side effect) each night. So, between the massive weight gain/loss and the injections, I will be extra sensitive to women who suffer PMS and diabetics…but whether it’s this cancer or either of these conditions would make me want to die outright.

You know, there are just too many things the media would try to scare you about. But life is too good, and at the sound of being cliché, too precious to ignore or to pass of as for granted, regardless of one’s age. As we age, even though it may seem so, life isn’t ethical, it just is. I’m 50 years old and while I’m more at peace with my own mortality, it’s no less a precious thing to me than when I was in my 20s.

A lot of what I find myself writing has to do with different perspectives on similar elements. I come again to mortality not because I’m morbid or that I even face it in a real way, but rather find myself full of gratitude for the little things and hope that you don’t have to go through what I have in order to come to some of the things I’ve seen and felt. I won’t suggest being a hedonist, but rather making the most of what you have. Live your life without regret, without fear, without ulterior motive. You just don’t know what might happen tomorrow. After all…it’ll kill ya.

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

Music for today from Phil Collins – True Colors

You with the sad eyes
Don't be discouraged
Oh, I realize
It's hard to take courage

In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small

But I see your true colors
Shining through
I see your true colors
And that's why I love you

So don't be afraid to let them show
Your true colors
True colors
Are beautiful like a rainbow

Show me a smile then
Don't be unhappy
Can't remember when
I last saw you laughing

If this world makes you crazy
And you've taken all you can bear
You call me up
Because you know I'll be there

And I'll see your true colors
Shining through
I see your true colors
And that's why I love you

So don't be afraid to let them show
Your true colors
Your true colors
Are beautiful like a rainbow

Can't remember when I last saw you laughing

If this world makes you crazy
You've taken all you can bear
You call me up
Because you know I'll be there

And I'll see your true colors
Shining through
I see your true colors
And that's why I love you

So don't be afraid to let them show
Your true colors
True colors
True colors are shining through

I see your true colors
And that's why I love you

So don't be afraid to let them show
Your true colors
True colors
Are beautiful like a rainbow