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

Gratitude - Ask A Nurse

After spending as much time in hospitals as I have this year, I’ve had a lot of conversations with nurses.  Nurses are great to talk with for a lot of reasons, not the least of which is that they’re in the trenches taking in more detail than any one body could ever possibly assimilate. They’re the complete package and if it doesn’t become glaringly obvious, I have the greatest respect for nurses of all stripes.

If you want to know what is really happening, talk to a nurse. A doctor will typically hedge around what’s going on rather than commit until a decision has been made. When joking about what is TMI (too much information), doctors will say, “You can’t tell us too much information,” while the nurses will open their eyes just a tad wider and mouth out, “Uh, yes…yes, you can.” Yeah, they still really do want to know everything from the color of your sputum to the consistency of your poop and they have a wonderful way of asking you about it!

I won’t idolize nurses here, but I will be very up front again in saying I hold most nurses I’ve worked with in the highest esteem. I can’t tell you exactly what makes a great nurse, but it just seems that the profession seems to attract the most amazing collection of attributes wrapped up in a heart of compassion that never stops amazing me with the limits it stretches. That’s not to say that there are people who shouldn’t be in the field and I’ve worked with them as well. In rare cases, there seems to be some sort of self-policing already in place and the conscientious nurses tend to shield the more sensitive patients from, shall we say the rare underachiever.

And that’s not to say the good ones don’t make mistakes. We all make mistakes. I had an instance where a nurse overlooked one small detail and even though it wasn’t serious enough to even register on a test, it required that I stay an extra day in the hospital. This person felt so bad about it that it brought tears and this person whom I honestly felt had it together couldn’t face me until the following day when there was an out-and-out apology. How many people do you know take on the importance of their job that fully and emotionally? Sure, you trust certain professions with your life and without doubt, medicine is one of them, but it would be just as easy to become jaded over time to emotionally protect oneself from the trauma of that responsibility.

After multiple inpatient stays involving many, many days with the kind of minute details with overlapping medical teams that have involved the complexity of leukemia not to mention the myriad of unexpected hitches along the way, there have been other mistakes, but they have honestly been minor and because I and those around me in caregiving roles pay close attention to everything that is happening, I’ve been able to get resolution on everything before moving forward – without exception. No nurse has given me a sigh about my questions. If anything, I’ve been cheerfully informed down to the most routine pill every time I’ve been handed one and encouraged to ask all manner of question right down to my relationship with that nurse - and that did come up in one instance early on, but again, not serious and not personal.

Unless you’ve been hospitalized for any length of time, you’ll not have experienced the acute loss of modesty and dignity that come part-and-parcel with anything debilitating.  Nurses have a way of stripping the embarrassment away and helping you just heal as best your body can. Some medications do funky things to you. They take away your ability to take care of basic bodily functions, make you say st-OO-pid things, and turn you into someone else for a time. I’ve experienced this quite a few times, but in extreme terms when I was in the MICU; the nurses there just smiled and helped me through it, especially when there were the foreign looking appliances you only see in medical supply store ads for the elderly.

And then there have been the most compassionate, sweetest things that elicit tears even today. Nurses actually saw me for who I was through my weakness. They listened to my kvetching or fear in the middle of the night when I couldn’t sleep or during those long chemo/IV sessions. A couple that stand out as examples were during my initial hospitalization in February and March earlier this year. I was struggling through this cancer diagnosis mentally and hadn’t really processed it. I mean, what do you say when you don’t even know the questions to ask? When a doctor gives you a 90-day death sentence, there’s not much more beyond the here-and-now. My guilty indulgence has been chocolate my whole life, so once every so often, I stop by my favorite coffee haunt and grab a mint mocha coffee which makes the rest of the day unassailable. I awoke in my mechanical hospital bed one morning to see a venti Starbuck’s mint mocha on my tray with “Don’t Give Up” written on the cup. I found out later a nurse had brought that in for me. Timing couldn’t have been any better. When I finally had my first emotional meltdown of this illness, it was a nurse in-training (the VA system calls them ‘health techs’) who brought me a warmed blanket, tucked me in bed with practiced gentle hands, and then let me regain my dignity back.

They might be simple things otherwise considered ‘gestures’ by anyone else, but to me at that time, they were huge. They were what I needed at the time and these two were perceptive enough to pick up where no medical protocol would have prescribed anything. Perhaps it’s that compassion combined with intuition – that space between the symptom and the intangible – that makes a great nurse from someone pulling a shift. I still can’t say, but I know I’ve experienced some great nursing and I can say without a doubt that I have had some world-class care that without these incredible nurses, would be a very sterile experience.

I’ve made a point of dropping off gifties to the nurses stations I’ve been attended by, but there’s really no way to extend how genuinely grateful I am to nurses for the kind of care I have received – and continue to receive throughout my treatment. I’m pretty vocal about telling people to thank cops, firefighters, and veterans, but I’d be remiss if I didn’t add nurses to that growing list.

To all the nurses, health techs, and others that attend me and my host of infirm campadrés, my heart-felt thanks to you all. You deserve far more than you get and should be paid far more than you’re compensated.  You’re definitely worth your weight in gold.

Be well, stay strong, and much love to you all…and if you do find yourself un-well, I hope you see just how awesome nurses are.

Today’s music from George Michael – Heal the Pain

Let me tell you a secret, put it in your heart and keep it
Something that I want you to know
Do something for me, listen to my simple story
And maybe we'll have something to show

You tell me you're cold on the inside
How can the outside world be a place that your heart can embrace
Be good to yourself
'Cause nobody else has the power to make you happy

How can I help you? Please let me try to
I can heal the pain that you're feeling inside
Whenever you want me, you know that I will be
Waiting for the day that you say you'll be mine

He must have really hurt you
To make you say the things that you do
He must have really hurt you
To make those pretty eyes look so blue

He must have known that he could
That you'd never leave him
Now you can't see my love is good
And that I'm not him

How can I help you? Please let me try to
I can heal the pain, won't you let me inside?
Whenever you want me, you know that I will be
Waiting for the day that you say you'll be mine

Won't you let me in, let this love begin?
Won't you show me your heart now?
I'll be good to you, I can make this thing true
Show me that heart right now

Who needs a lover that can't be a friend
Something tells me I'm the one you've been looking for, oh
If you ever should see him again
Won't you tell him you've found someone who gives you more?

Someone who will protect you, love and respect you
All those things that he never could bring to you
Like I do or rather I would
Won't you show me your heart like you should?

How can I help you? Please let me try to
I can heal the pain that you're feeling inside
Whenever you want me, you know that I will be
Waiting for the day that you say you'll be mine

Won't you let me in, let this love begin?
Won't you show me your heart now?
I'll be good to you, I can make this thing true
And get to your heart somehow

Part of the Plan

There are two ladies who handle appointments at the Marrow Transplant Unit (MTU). They are amazingly efficient at directing traffic, they are calm under pressure, and they even remember my preferred name instead of simply referring to me as Mr. Park.  I watch the two of them and am amazed at their perpetual smiles and how efficiently they keep things moving. Considering the sensitivity of the work on the ward and that there are double the people (patients and caregivers) who are constantly coming and going, it’s actually rather noisy and even confusing, but these two ladies are cool customers!

After I left the hospital Friday afternoon, I got a call from one of these ladies. She told me that on Monday morning, I would be meeting with the doctors to determine my course of treatment – the next part of the plan. I was left with the impression based on the transplant date that I wouldn’t likely be seeing them until some time around the 12^th even though they would be probably meeting on Wednesday to discuss my case. My gut feeling from what I’ve been hearing is that I’ll be undergoing a standard myeloablative transplant rather than the “mini” (non-myeloablative). Because of my good physical condition and age, I’ve been told I can tolerate the rigors of this procedure. If this happens, I’ll be admitted on August 14 and begin a course of busulfin and cytoxan, two very powerful chemicals to decimate my immune system so that the transplanted stem cells will engraft when infused a week later.  There are apparently fewer complications for this procedure than the mini and it will put me on the road to recovery and subsequently home sooner, provided that everything works out well. The other plus – and it’s a big plus in my mind – is that I would not be undergoing total body irradiation. Like I posted yesterday, there are plusses and minuses to both procedures and the big minus to the standard transplant is that it will make me a whole lot sicker than the mini and I’ll be inpatient for about 3-4 weeks.

I met with the transplant coordinator on Friday as well and she advised me that my correspondence with my donor wouldn’t be possible for two years. There are some very strict privacy regulations with respect to donor privacy and my correspondence has to be very generic and can’t even include anything that would indicate the country in which I am living! That leaves things pretty broad, reminding me of the kind of letter a third grader writes to the fireman who visits the class for a super show-and-tell. While I understand confidentiality, HIPAA, and privacy, I have a profound sense of gratitude that generic greetings cannot possibly convey. I’m inclined to believe my donor came from out of the country as the waiting period is two years instead of one, the usual period for domestic donations. When the prospect of a transplant became a necessity back at the beginning of this odyssey, there was some discussion about Germany having a very robust bone marrow donor program. At the time, I joked about coming through the process with a German accent à la Hans and Franz from Saturday Night Live. All I do know as a matter of fact at this point is that my donor is male.  Even though I am genuinely grateful, I tend toward the irreverent (yes, it’s true) and I am inclined to believe my donor is foreign, so I am referring to my donor as Hans from this point forward. He has to have a name after all and I obviously have Northern European genetics. I do hope that I get to meet him face-to-face at some point. I’d very much like to extend my gratitude to him in person. Perhaps by zen, I’ll be talkin vis a German accent and very muscular – ve vant to pump you up!

Hans and Franz from SNL ... pumping me up with stem cells! 

One part of the plan at a time.

In the meantime, I’ve continued to terrorize Seattle as a tourist. The people I’ve met have been wonderful, all great ambassadors of the city. On the road, I’m less inclined to speak in glowing terms and that extends to the parking lot. So, today, instead of playing the alphabet game as I did during the last road trip I took with my sons, my ‘game’ was to spot the most egregious parking job. We came across three pretty good examples in short order. Being a tourist has been both bad and good.  Suffice it to say, anything to move me closer toward returning to life as I knew it, or at least as close to it as I can get, is movement forward. On the other hand, I’m facing some unpleasantness over the next few months, some of which will make me feel pretty durned sick. My sleep schedule will return to the erratic inpatient routine and I’ll get intimate with white-coated folks who are interested in how regular I am. This time, my middle-of-the-night conversations inside my head about mortality will have more gravitas, even though I have no intention of going down that path.

And yet…

There is much to be grateful for and much to look forward to and much to live for, even if it looks different than I had thought it would. It’s all part of the plan

Today’s music from Dan Fogelberg, appropriately enough, Part of the Plan

I have these moments
All steady and strong
I'm feeling so holy and humble

The next thing I know
I'm all worried and weak
And I feel myself
Starting to crumble

The meanings get lost
And the teachings get tossed
And you don't know what
You're gonna do next

You wait for the sun
But it never quite comes
Some kind of message
Comes through to you
Some kind of message
Comes through

And it says to you
Love when you can
Cry when you have to
Be who you must
That's a part of the plan
Await your arrival
With simple survival and
One day, we'll all understand
One day, we'll all understand
One day, we'll all understand

I had a woman
Who gave me her soul
But I wasn't ready to take it
Her heart was so fragile
And heavy to hold
And I was afraid
I might break it

Your conscience awakes
And you see your mistakes
And you wish someone
Would buy your confessions

The days miss their mark
And the night gets so dark
And some kind of message
Comes through to you
Some kind of message
Shoots through

And it says to you
Love when you can
Cry when you have to
Be who you must
That's a part of the plan
Await your arrival
With simple survival and
One day, we'll all understand
One day, we'll all understand
One day, we'll all understand

There is no Eden
Or heavenly gates
That you're gonna
Make it to one day

But all of the answers
You seek can be found
In the dreams that
You dream on the way

The "New Normal"

I’ve written in a previous post that that “normal” should never be the goal, but that we should be re-defining normal and actually living with intention. Having had two extended stays at the “other Club Med”, the ordinary things in life became rather intense for me today in a good way. I went to bed about 8:00 last night since I hadn’t gotten much sleep at the hospital; and I slept uninterrupted until my usual 5:30 at which time I got up, took my vitals on my own (yes, doctor, I am just as paranoid about my health and have no desire to be camping out in the ER!), took a nice shower, made some coffee, and cooked up my own breakfast.  Now, breakfast for me usually is a pretty low-key affair consisting of fruit and yogurt, but I was hungry, really hungry, so I made some potatoes with bacon and onions and a couple of scrambled eggs. Admittedly, this is still a pretty non-eventful breakfast. Unless, of course, you’ve been eating from a tray in a hospital room for about a month all told. Then, the smells, the texture, the very details about each bite just became intensely satisfying. It literally made me cry…and why? I can’t say exactly. I mean, I am a pretty good cook, but not that good. Why it would elicit tears is beyond me.

I’m sure gratitude plays prominently into the mix, but without digressing into the paralysis of analysis, it just comes down to redefining what ‘normal’ is. Normal used to take pretty much most everything for granted, including the simple act of drawing an uninhibited breath. Today, I found not just breakfast, but so much more to be vibrant and downright fascinating. I found myself smiling a whole lot more than I might have otherwise. I was also appreciative of both the good and the bad side to wearing a surgical mask in public.  So many people are a bit scared seeing someone wearing a mask that they make eye contact long enough to register the mask and look away very quickly. They won’t talk to you, but in making my grocery run, two workers at Smith’s (my local grocery chain) made a point of greeting me and engaging me a bit. That hasn’t happened before when I've been behind the façonable yellow mask.  In fact, when my daughter was here, the only people that would talk to me on my walks around the block were panhandlers.  Everyone else, including the family with small children made haste to run away, literally.  Run away from the guy with the skull cap, glasses, and mask. See if I give out candy next Halloween…and all this time, I thought it was the fancy hair-do! Go figure.

'Normal," today, isn’t just something I’m having to redefine because of what I can and cannot do thanks to temporary physical or medical limitations. It’s something you and I both have the choice of discovering and it’s a product of outlook, of attitude, of refusing to be defined by circumstances or expectations. It’s accepting that perfect will never be something we can achieve. And that’s not something advertisers and retailers and a host of others want us to believe, but let’s be clear about this: perfection is the harbinger of death. You can perfect a technique, you can perfect a look, but when you get to that stage of being perfect, you stop trying. The act of struggling is what keeps us alive and, for better or worse, it brings us together. To struggle, to strive for achievement and productivity is to find meaning and to live. Is it any wonder that when people retire, they find something to keep themselves engaged? Those who don’t find some way to continue participating in their culture or family languish and fade away to their demise. I look at my own grandfather who taught himself computer skills and to self-publish; and well into his 90s, translated Turkish literature, selling it on amazon.com. (Click here to see the list of titles that with the able editing help of my grandmother, you can still enjoy.) He wasn’t into making money on it, but he was active, lucid, and contributing. Had his eyesight not given out, I seriously have to wonder if he’d have made it to 100. He was just that kind of guy and one whose positive example I want to emulate.

Of course, the other part of the new normal is a bit of attitude. I used to be so sober-minded that people called me, “Your Seriousness.” Where’s the fun in that?  So, part of my new ‘normal’ attitude has an edge and is a whole lot of fun.  Here I am “pole” dancing, replete with my admirers stuffing dollar bills into my waistband. Not exactly what you thought pole dancing was all about, was it?  And just imagine the kind of coordination and lack of inhibition that took!

 

And here’s something that just came in the mail today to poke fun at myself. I think I’ve found my sideline business for those of us afflicted with the side effects of chemotherapty, but haven’t lost our sense of humor.

So meet the new ‘normal.’ It’s going to look different tomorrow than it does today, but one thing for certain, it’ll be a whole lot funner than yesterday!

Today's music:  "Good Life" by OneRepublic.

Oh this has gotta be the good life
This has gotta be the good life
This could  really be a good life

 

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

Making history or histrionics?

“Join the Navy, see the world,” was one of the advertising campaigns for the US Navy when I received my appointment to Annapolis back in 1981. Over the subsequent eighteen years, I would visit 35 countries and receive orders that would take me to 14 commands where I would meet thousands of people, many who became acquaintances, and a good number who I counted as friends. After leaving active duty, I’ve lived in three major metropolitan areas and because of volunteer work and my cycling, I’ve only added to that number. Throughout the years, some of those friendships wax and wane of course, but thanks to social media, I, like so many others, have reconnected with those acquaintances and friends as well as alumni from high school and college. The numbers are amazing when you think about it. But, even there, we all recognize that we have “facebook friends” and “real friends.” In my case, the vast majority really are people I know and interact with from time to time – on-line, by phone, and in person.

I can tell you that’s true from being on the receiving end of a flood of so much good will, it’s hard to wrap my head around it all. Now, that good will has been more than a simple “like” on a posting. Take for example the day I left the hospital.  I arrived with a gym bag of three sets of sweats and enough underwear and sleeveless t-shirts to last me a week. I had a toiletry bag as well. I brought my laptop bag for business and I had a sac with some crossword puzzle books and a novel to read.  When  I left, I had two potted plants, six (6) grocery bags FULL of snacks and goodies, a really nice little treasure chest full of Starbucks and Godiva, three books, and more.  Most of this came by mail from east and west coast and by visitors, some of which I don’t know all that well, and one who drove a full day from Southern California. If that’s not love and true friendship, I can’t tell you what is. But there’s more.

The Houston contingent of my
fan club I didn't know I had!

I felt like I had my own cheering section from the Philippines when I saw a video posted to my timeline from one person I knew as a facebook friend, never having met in person. There was a group of people whom I’d never met wishing me well.  And then there’s another facebook friend who organized a blood / bone marrow donation drive. I was utterly delighted to see my cycling buddies from Team OC on a video. Social media kicked into high gear and people did something.  I’m just one person who happened to get a bad deal and I got the kind of overwhelming support that is genuinely humbling.  Then there are the people that I know here locally that have rallied around me. The nurse’s station has had to play the role of traffic cop on occasion, but they don’t seem to complain about it. I’ve had a steady stream of visitors that I am certain contributed to my early release.  Something tells me the nurses know the score on that one!

It really doesn’t matter if you think Facebook is the great time-suck of our time. I’m here to tell you that, in my case at least, it has been a tool to let people know in my own way what was going on without issuing an invitation to a private pity party and that message went, well...viral in a way. The people that mattered responded and I, for one, am so very grateful to have spread such a wide net in my life of friends that, whether they’re into the social media thing or not, elected to hang with me in this tough time.  You can be sure that where I’m able, I will continue to keep in touch and build relationships. The dividends are just too high not to invest! And I’ll be there where I can. Facebook, LinkedIn, and other networks are just platforms, not substitutes; but they are often the springboard to doing something tangible and making a real, tangible difference. Just like any tool, it can be a waste of time or a springboard for something great. It’s what we make of it. Look no further than the wasteland of “reality TV” and then switch the channel to something really phenomenal that transports you to another place and time, educates you, or inspires you to do something really meaningful. It all comes back to us as individuals. We can either use technology as a way to numb us from reality like any other illicit drug or we can harness it to be great.

If the few examples I cited above for this one person with a cancer diagnosis can inspire a few people, imagine what you can do to inspire yourself … and who knows how many others.  If my small network of family, friends, acquaintances, and on-line buddies can make a few things happen, those of you with substantial influence in the social media world have incredible potential to make positive changes far beyond commercial gain. Think about it. How many people in your network do you know? More importantly, how many people in your network do you influence for good? Use a little math and you quite literally have the power to change history…or you can be satisfied to like the kitten pictures and fun videos.  I know, I’m the pot calling the kettle black some days, but using a little critical thought, a bit of fact-checking, and harnessing that inner drive and passion we’re all so stoked about during interviews, there is no limit to what you can do.

So, tell me, how are you going to harness that power in your fingertips? Will you make history or histrionics?

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

Gratitude – Little Things Mean SO Much

It’s a quiet evening at the Salt Lake City Veteran’s Hospital. Normally, I leave the door ajar for ideal people-watching vantage.  Of course, that works both ways, not that I’m a particularly pathetic specimen for anyone to see…yet. With the PICC line in my upper arm, I thought it would be more convenient if I went shirtless this morning to make things easier for access to the lines when the nurses took lab blood or when it was time for chemo.  The intern this morning commented, “You look like most of the guys in the VA now.”  I had to laugh and I noticed he was right when I took my IV pole for a walk. I haven’t seen any women here and most of the men do indeed go shirtless in their rooms. In a place where we just want to be comfortable, it feels good to just forego the hospital gown fashion (although I favor athletic warm-ups anyway, and certainly when I’m of the room). It’s a small thing, but then again, the small things sure seem to mean a lot all of a sudden.

The hallways are eerily devoid of the gaggles of doctors, nurses, orderlies, and other people that make this place hum during the day.  The only noise I hear right now is the guy with dementia next door who is rather vocal. I get some work done during these hours and I also have some time to watch something on Netflix or reflect. I find that every time I come to a hospital – this time included – I find that there is something that for which I can be truly grateful. It’s not schadenfreude, but rather a profound reality that regardless of the state I am in, there are those who are working through something more challenging.

One of the nurses who attended me during my testing last week invited me to come down the hall and have a pizza lunch with the rehab patients since I would be on the ward for at least a month.  I got to meet up with a handful of other veterans who were experiencing an extended stay as well. We got to exchange a war story or two and the socialization was a welcome change to the usual. They have fun stuff going on over the weekends when this place empties out so, it’ll be a welcome change…and although the food here has been great, Domino’s hadn’t tasted so good. My dad ‘smuggled’ in a venti Starbuck’s mint mocha in for me today, so I was doubly spoiled.  As you might imagine, the Leukemia Weight Loss® plan is not yet working on me.  I was up 1.6 pounds and the nurse was suggesting that I get a drug to make me drop some liquid weight. Nope…not gonna happen! I was cheating.

I finished my third of three rounds of the Idarubicin (“red devil” chemo) and am mercifully feeling good still. I did a little reading on the Internet and found this is the stuff that causes hair loss and changes urine to a dark red color.  I’ve got about a week left of my full head of hair, so I’m enjoying not doing anything with it. I also understand that *all* of my hair will find itself rejected by my chemically altered body, including a welcome break from shaving. I’m somewhat prone to ingrown hairs, so I get a break from that! I had a survivor of ALL (really bad leukemia) who had a great big Western moustache that matched the size of his belt buckle talk to me about his experience yesterday since the topic of bone marrow transplant came up.  He told me that when he lost his hair, he essentially picked his moustache right off of his face!  I’m clean-shaven these days, but the temptation was almost palpable to let enough facial hair grow in to do something like that. I think I’ll pass on that opportunity.

All in all, today was rather tame compared to yesterday, but as my dinner was placed courteously on my bed this evening, I teared up and realized just how really good I’ve been treated. Every little detail flooded back to me over the course of the day from getting a lovely hot shower that was far from the “navy” soap up and rinse off 2-minute shower I took for granted while serving at sea to the smiles and genuine kindnesses each and every single person from the VA gave me while attending to my needs to my company sending over an IT guy to make sure I had what I needed to make my work more efficient to the calls, text messages, and hugs from loved ones made sure they knew how much I mattered…and then the flood of well wishes from literally around the world from so many places I’ve lived and loved. Every little thing added up to reinforce that I’m so very much held up by countless hands—seen and unseen. I was overwhelmed in an instant in knowing and feeling such an incredible bubble of a palpable love, it just overflowed.

Gratitude is such a shallow word, yet it’s what I have right now. I know I’ll make it thanks in no small part to the many, many healing hands – things small and great that bear me up where I just don’t see or feel or know that I need.

Thank you. Thank you, everyone for giving me what you have.