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

Dude, We Be Trippin

Most Monday mornings start with an alarm clock and a commute. My Mondays for the past several months have involved a blood test at the Salt Lake City VA Hospital and physical therapy to recover from a particularly rough round of chemotherapy and to prepare what promised to be a particularly rough treatment regimen in Seattle. Suffice it to say, when the call from the Seattle VA Hospital came to let me know I had a bone marrow donor, I had a flood of mixed emotions. I was relieved that my wait was over, yet the actual treatment would be a tough one. I had been told by a number of people that the bone marrow transplant process was nothing short of a pharmacological miracle. It would take me to death’s door at which time the donor stem cells would be infused and bring me back from the brink. I was elated to get this second lease on life, but I wasn’t so stoked to be getting gravely ill.


My oldest son flew out to Salt Lake Saturday to drive up with me, so we made a regular road trip out of it, replete with junk food, jokes, and a touch of kitsch. It was good to catch up and get to know him a bit better during the drive. My younger son will be flying directly to Seattle next week and the three of us will use the next four months to make up for lost time and have some fun in the middle of what is otherwise a less-than-fun medication staycation.

Our first day on the road was spent crossing the Great Basin – the dramatic stark landscape of Western Utah and most of Nevada. We finished the day driving past Lake Tahoe and over Donner Pass. It was an amazing juxtaposition and reminded me of acquaintances I once knew who typically made dinner reservations under the name “Donner Party” <insert groan here>. The mountains were absolutely beautiful, but it became obvious just how arduous it must have been for 19^th century pioneers to cross over the Sierra Nevadas. Spending the night in the Sacramento area, we visited some friends and when we made it back to the hotel, we crashed thoroughly.

My son, Austin, near Shasta, CA.

Leaving Sacramento, we headed northward toward the Redwood Forest, driving through more mountains, arriving at the coast early in the afternoon. Having lived in the south part of the state, the coastline was strikingly different. The fog hanging over the ocean cliffs made for evocative pictures and it was considerably colder than the previous day’s drive. Crossing the Great Basin, we saw 100° to 105° most of the day, but on the coast, it dropped down to nearly 50°. Break out that jacket and turn on the heat in the car!

 

It's tremendously hard to capture just how big these redwoods are.  If you look at the right side of the downed tree, you can see my son for a size comparison.  These trees are just immense!

We arrived at Redwood Forest National Park about 4:00 and drove through the southern part of the park near the coast. I don’t think any picture can really do justice to the sheer magnitude of these immense trees! I took a few photos with my son in the picture to emphasize how big the trunks are, but looking up, they disappear into the overcast mist and with the forest so eerily silent, it may as well be a scene right out of Jack and the Beanstalk. The drive out of the forest reminded me of scenes from Snow Falling on Cedars. It’s no wonder that the area has brought forth so much out of the fertile imaginations of writers and artists. We ended the day in Eugene, Oregon. We both realized as we turned it that it was the second day we were just so wrapped up in the day that we forgot to eat dinner…but we were both very full.



A few sea lions inside the cave. This is usually an epic King of the Hill battle.

The final day of our road trip took us to Florence, Oregon, a small coastal town that is home to a sea cave that draws sea lions by the hundreds each year during their breeding season. My dad, who is normally pretty stoic when it comes to being a tourist, said that this was one of the places where he was glad he went.  Florence is about 90 minutes from Eugene, so we jogged back over to the coast and found the place. The visitor entrance sits on the coastal highway on a cliff nearly 300 feet above the water.  The scenery, once again, was breathtaking. Standing on the observation about 200 feet above the water, the rocky shelf below must have had nearly 100 sea lions bathing in the sun and making sounds that my son tried to imitate with every belch! His girlfriend is as impressed as his dear ol’ dad. A 200-foot elevator ride took us down into the cave itself.  We were able to get within about 75 feet of a few sea lions that had actually come into the cave, but most of them stayed outside.

Driving down the road, this vista demanded we stop and take a pic. This is just south of Florence, OR.

From there, we hit the road northward again. Austin had originally wanted to visit a couple of places in Portland, but he couldn’t find a specific address, so we’ll have to do that on an upcoming weekend.  Once we crossed the Colombia River, we started to see volcanic mountains off in the distance.  Mt Saint Helens was a figure that held some mystique and I was amazed just how big it seemed from the highway.  I had no idea it was so close to Seattle. That, also, will be a weekend excursion, to be sure.

Arriving in Seattle, it felt nice to see the end of the trip in sight…yet, in reality, it’s just the beginning of the next leg in a larger journey.

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

Today’s music is an instrumental – End of the Road by Umphrey’s McGee

 

Undaunted Courage

Every one of us has to face challenges from time to time. Some of them are personal, some are physical, some are moral, but they stir within us something that is greater than ourselves. One of the challenges I’m most proud of is completing the AIDS LifeCycle – an event raising money to care for people living with HIV and AIDS and the service organizations that care for them.  It involved training far beyond my then 49 year-old frame was prepared for. I thought I was at least a decent cyclist until I came across some of those nasty damned hills in Orange County. I had some days where I felt like I just had to pull over and throw the bicycle off the side of the road and call it quits, but I had a whole team-load of people encouraging me, cajoling me, prodding me, and teasing me to keep going. After all, I was training for an event that wasn’t about me.

 

So, I gave up what I had of a social life and trained on Saturdays and as the event got closer, other days of the week as well. I put up with the blowing sand near Solana Beach and saved a bundle on that microdermabrasion treatment I wasn’t considering, I learned how to change flat tires, and I learned a lot of humility and life lessons along the way. I won’t say that I didn’t have just a little trepidation about doing this 545-mile ride, but I was determined. I had supporters, both financial and physical that made it possible and I had beneficiaries, some I’d visited in training, some I’d heard about as a teammate carried their names on military-style dog tags around his neck, and some I’d met on the side of the road thanking us for remembering their loved ones.  It was profoundly moving because it wasn’t just an ego investment in riding my bicycle a long distance. It forced me to take my eyes off my poor achin’ bod and keep these very real people ever before me. I was inspired, I was moved to tears many times, and I was never the same afterward. My very much daunted and intimidated self was forever changed in the course of a week.

 

I had registered to ride this same event this year and had I not been saddled with a bit of a medical setback at the Salt Lake City VA with an IV pole, would have crossed the line at the Los Angeles VA amid the cheers of the thronging multitude.  No, really…it is a crowd that will make you cry no matter how macho you think you are. I followed my teammates via Facebook as they rode down the coast with pride and envy. They really became an extended family of sorts and I broke out my orange beanie in solidarity with Team OC this week. I can’t say that I’ll have the strength to ride in 2014, but I’m going to do my best to see them off or greet them at the finish line next year…and depending on how my health is the following year, I’ll be looking at making my way down the coast in 2015!

Despite the physical and mental demands of something like this, I did it! (Read about it here if you like). I overcame my doubts, my physical limitations and stretched beyond. In the process, I changed. It made me into someone else. I had someone equate the event to a religious experience, and I guess in a way it was. I think that any major challenge will touch your spirit in some way and you have to rise to that occasion or be destined to repeat the lesson some other way. Suffice it to say, a cancer diagnosis is one of those things that steers your eyes at things that you wouldn’t otherwise look. I’ve written about a number of those things, but it’s fair to say that there are yet many of those lessons in humility, life lessons, and opportunities to face my fears and overcome them.

I believe you can face your own fear with undaunted courage without having to face your mortality. Maybe in my case, that’s the only way for me to stop tending my many irons in the fire long enough to take care of myself for a change.  Maybe not.  I’ll be able to look back at some point and say with some certainty what that is. My hope is that I don’t doom myself to repeat the lesson by ignoring what’s in front of me. I’m still a bit spooked about the future, but I’ve spoken with enough people to know that I can do this. I may falter along the way; I may feel like pulling over and chucking the IV pole out the window; I may feel like my courage just isn’t enough to carry me through, but just like my Team OC compadres, I need you, dear reader to be alongside me.  This, like the commitment to ALC I made, is a long-term deal.  I’ve been told by every survivor that it takes a good year, post-transplant, to feel 100%. I don’t anticipate being sick very much of that time, but healing isn’t a short-term process and it’s not something I can do solo. I need you – all of you.



This is my extended SoCal family - Team OC (Orange County)
at the end of a long, hard, week, yesterday - June 8, 2013.
You can't manufacture those smiles!

I'm sharing a couple of things from this year’s ALC, which ended yesterday, mainly my teammates who gave me the courage to keep going under some pretty rough conditions that included an evacuation by the Red Cross on day 2. Hypothermia for all my friends (and me, too) as well as a video that was shot during last year’s event. It is this kind of support, this kind of pushing through the discomfort, this kind of looking past the here and now to the hopeful future that keeps me going some days. I also want to challenge you to face your fear with undaunted courage and to cheer others on who are giving their all as they plod up a steep hill in their own journey. It’s OK to have reservations, bad days, or even tears, but with people alongside you, you can rise up, get back in the saddle, and succeed…and become a different person in the end.

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

Today’s music:  Don’t Give Up by Peter Gabriel

In this proud land we grew up strong
We were wanted all along
I was taught to fight, taught to win
I never thought I could fail

No fight left or so it seems
I am a man whose dreams have all deserted
I've changed my face, I've changed my name
But no-one wants you when you lose

Don't give up 'cause you have friends
Don't give up you're not beaten yet
Don't give up I know you can make it good

Though I saw it all around
Never thought that I could be affected
Thought that we'd be last to go
It is so strange the way things turn
Drove the night toward my home
The place that I was born, on the lakeside
As daylight broke, I saw the earth
The trees had burned down to the ground

Don't give up you still have us
Don't give up we don't need much of anything
Don't give up 'cause somewhere there's a place where we belong

Rest your head
You worry too much
It's going to be alright
When times get rough
You can fall back on us
Don't give up
Please don't give up

Got to walk out of here
I can't take anymore
Going to stand on that bridge
Keep my eyes down below
Whatever may come
and whatever may go
That river's flowing
That river's flowing

Moved on to another town
Tried hard to settle down
For every job, so many men
So many men no-one needs

Don't give up 'cause you have friends
Don't give up you're not the only one
Don't give up no reason to be ashamed
Don't give up you still have us
Don't give up now we're proud of who you are
Don't give up you know it's never been easy
Don't give up 'cause I believe there's a place
There's a place
Where we belong