Heroic

Being a frequent flier of the Veterans’ Hospital, I have come across a great many men who have been to the edge of hell and back. Some bear scars on the outside, but just as many still nurse wounds inflicted on the inside. Some things just can’t be unseen, some things just can’t be undone, and some experiences just too unimaginably traumatic to be dulled by the passing years. Ball caps, decorated with bright embroidery cover the receding hairlines of gray and shade the eyes that once saw the unthinkable. Makes me wonder if Danté was a vet!

The eyes I’m seeing more frequently are getting brighter and the hair is far from gray, but the wounds are just as traumatic. One such young wounded veteran and I became friends after crossing paths at the hospital a number of times and sharing a lot of time together connected to our respective dancing partners – that would be our own IV poles—at the ‘other’ club med. When he told me the story of how he lost his legs in Iraq, the only thing that came to my mind was that I had met “the real deal,” replete with medals and a story of saved lives under fire. Yet in talking with him, he refuses to be labeled a hero. His attitude is simply that he couldn’t live with himself had he not done what he was trained to do. He harbors no bitter feelings and doesn’t feel like the world somehow owes him.

My friend, Isaac. He has a fancier IV pole that I do, but trust me, I'm not at all jealous!  He's getting a cocktail of all kinds of things post-surgery.  I'm getting another dose of toxic chemical goodness (aka chemo). He and his very beautiful wife are keeping me company. His scar looks amazingly like the Continental Divide. Yeah, aside from war stories, that's what we share -- we compare scars! He wins that one...I have no fancy scars to show off except that my arms make me look like a drug addict and my one time PICC line sites. Move on, nothing to see here, folks!  

My look of incredulity wasn’t the first he has dealt with. People see him in his wheel chair or on his prostheses and want to connect with a bona fide hero, but he’s not interested in being the center of that kind of attention. It struck me that he just wants what I want: to be treated as normal and enjoy the same life as everyone else and while we can’t get away from that thing that brought us together in the hospital, neither do we want to be owned or defined by it. I think the best way to put it is that there’s simply a profound sense of patriotism that frowns on the bumper stickers, but sticks to what’s genuine.

I don’t mean to paint the kind of picture where there’s some sort of “Aw, shucks, ma’am. I was just doin’ muh job” kind of exchange, but in a real sense, it’s just what we do and who we are. Professions where those routinely putting their lives on the line like police officers and firefighters are very much the same. They accomplish the heroic on a daily basis, they incur the same kinds of external and internal traumatic injuries, and they most certainly deserve the same respect as our returning armed forces veterans.

Translation:  Courage isn't falling, but getting up each time you fall. 
I put up the French version since it's Bastille Day

But there are other kinds of heroic acts where any one of us ordinary people rise to the occasion and do something that impacts or saves someone else’s life. We read about these people in the paper or on our social media outlet of choice that restore our faith in humanity - that our world isn’t full of inept or downright corrupt politicians, selfish and willfully ignorant followers of demagogues, or powerful people who wield their influence only to increase their wealth. What those heroic acts consist of are pretty subjective of course, but for the person who is on the receiving end, it means everything and sometimes it means a saved life.

It’s that kind of heroism that is quite literally saving my own life.  Earlier this week, I received a call from the Veterans’ Administration Health Care System in Seattle. The nurse on the other end of the line informed me that a bone marrow donor had been identified and that I would begin the next phase of treatment for my leukemia on July 25. The waiting is over…for now. The first two weeks will be for evaluation. At the end of these two weeks, I’ll find out what kind of transplant I’ll be undergoing as that hasn’t been decided yet. That much, at least, is news to me. At that point, the really ugly preparation begins and my immune-reboot process begins in earnest. It’s an exciting prospect of course, but it also rendered me officially freaked out. Things have become very real in short order.

Regardless of the machinations going on inside my own brain, some young man who will be unknown to me for at least a year, has done one of these heroic deeds. His decision to donate his stem cells will give me a second life. That sounds so very simple and perhaps a touch hyperbolic; and while it’s difficult for me to think about it in those terms, it’s unquestionably true.

I think the really difficult part for me to wrap my head around is that I’ve never had any outward symptoms to where I could point my finger.  All the things the hem/onc doctors asked me about were never part of my experience.  I felt like a million bucks one day and was quite literally on my way to the gym – bag packed – and the next thing I knew I was being poked, prodded, and tested ad nauseam in a hospital bed. After months of lab tests which, to me, are nothing more than numbers on a page, I’m going to be taken to the brink of death and an anonymous hero is swooping in at the last possible minute and giving me an infusion of his blood and I will rise from the (near) dead and be restored.  Comic book aficionados or people with a spiritual background probably see a number of parallels there and to be sure, they’re not lost on me. The whole process is nothing short of a pharmacological miracle, really!

So, to my unnamed donor (as of today anyway), my deepest and most sincere thanks for you doing something heroic, even though you may not see it as such.  May you receive in return, many times over, the good will and kindness you have extended to me…and may you never know the need of a stem cell infusion in your own life. And of course, may that life be long, fruitful, and filled with much joy.

To the rest of my support network – both near and far – thank you for hanging with me for what has been a rather long trip.  We have another four months or so to go, some of which may get pretty rough. I’ll need you more than ever during that time. Stay tuned…and of course, you all need to be well and stay strong where I may have some challenges there and know that you are loved very much!

Today’s music: Hero by Chad Kroeger featuring Josey Scott

I am so high, I can hear heaven
I am so high, I can hear heaven
Oh, but heaven, no heaven don't hear me

And they say that a hero can save us
I'm not gonna stand here and wait
And I'll hold on to the wings of the eagles
Watch as we all fly away

Someone told me that love would all save us
But how can that be? Look what love gave us
A world full of killing and blood spilling
That world never came

And they say that a hero can save us
I'm not gonna stand here and wait
And I'll hold on to the wings of the eagles
Watch as we all fly away, oh

Now that the world isn't ending, it's love that I'm sending to you
It isn't the love of a hero and that's why I fear it won't do

And they say that a hero can save us
I'm not gonna stand here and wait
I'll hold on to the wings of the eagles
Watch as we all fly away
And they're watching us, they're watching us
As we all fly away
And they're watching us, they're watching us
As we all fly away
And they're watching us, they're watching us
As we all fly away, whoa

Destination Medication Staycation

This is not where I'm spending my staycation...but I am going there!

My previous job had me traveling quite a bit, so I had enrolled in the loyalty programs for a few of the major hotel chains and had even gotten to the ‘gold level’ on a couple of them. It was nice to show up and have reception greet you with that little extra. Checking in today, I didn’t get the deluxe suite at the lesser known Club Med’s Salt Lake City premier destination medication staycation location – the VA Hospital – but I did get greeted with that extra je ne sais quoi! No fresh cookies, but the coffee’s not half-bad. And no needles today! Yeah!

Throughout the day, I had visits from the people that know me and as usual, it’s like Cheers! where everybody knows your name.

This week, I’m getting round four of consolidation chemotherapy as many people are feeling that I’ll get the call from the Puget Sound VA to begin the bone marrow transplant procedure. As I’ve said before, I harbor no illusions (or hallucinations for that matter) that this is going to be anything but a rough few weeks up front, but if my body’s response to the induction and consolidation chemotherapy treatments are any indication, I’m hoping for nominal graft-versus-host (GVH) and a speedy return to a more typical lifestyle.  I’m shying away from the word ‘normal,’ because my new normal, I don’t think, is going to be too terribly much like it was before.  It should have some similarities, but mentally, I anticipate a completely different outlook and point of reference.  If I were one to invoke business-speak, I could call it a genuine paradigm shift, but I loathe that kind of talk even though this is the kind of context where it makes the most sense.

Suffice it to say, a staycation at a hospital is really a bit of an oxymoron.  It’s hardly a vacation. I don’t get a great deal of sleep because at night I’m getting awakened to get my vitals checked and if I take a nap during the day, I still get that squeeze on the right arm and the lovely tasting medication, none of which make you feel like you’re on a pharmacological getaway. Now, that’s probably a good thing because no one is inflicting any pain on me. I get another infusion of that toxic chemical goodness that kills all the badness that attempts to kill me, of course, and thankfully, I’m able to predict pretty well what is going to happen chemically within me so I can keep ahead of the unpleasant side effects.

I can say that the food isn’t bad, but it’s not something I will be writing to a cruise ship line and suggesting they adopt the recipes.  I’m pretty easy to please for the most part and I have to say the VA system has done pretty well when it comes to mass institutional food. My exceptions are corn on the cob (which I normally really like), Brussels sprouts and peas (which I normally really don’t like at all), and for the love of God, can I have some ketchup? I’ll even forego the salt. I feel like a schmuck wandering down to the cantina on the ground level and grabbing a handful of ketchup packets, but a man’s gotta do what a man’s gotta do, right?

I understand that ADHD kids get a medication vacation where they go off medication every so often.  I, on the other hand, get these period where I’m a pharmacist’s dream where I get to list off things that sound like another language all in one 24-hour period.  I get cytarabine of course, which is the chemo drug that keeps the leukemia nastiness in check, but I’m also enjoying the loveliness of dexamethasone and Zofran steroids that come with the chemo; Allopurinol, which is normally prescribed for gout, so in my case, it protects my kidneys from the chemo; Prednisolone eye drops which keep my eyes happy from the chemo as it also is eliminated from my system through tear ducts; Prochloroperzine, which keeps the nausea at bay (and does a nice job, I must say). When I leave, I get a lovely assortment of antibiotics including ciprofloxacin, an antiviral assortment of acyclovir, and a beautiful bottle of pinkness called fluconazole.  Isn’t that special?! When you stay at the ‘other Club Med,’ you only get the best in unpronounceable things. I will freely admit I prefer the aromatherapy candles and the New Age music, but the alternative isn’t really much of an option for me right now. 

 



Admit it...who doesn't fantasize about
being in a place like this?

I have resolved that a getaway to Hawaii is definitely in order when I have been given the green light to travel.  My frequent flier miles are burnin’ a hole in my statement and needing to be used to get me to the islands and that loyalty point balance should offset the lodging. My dreams (when I actually can sleep long enough to have them!) has a gentle breeze blowing sheer curtains and drawing me out to the balcony where I enjoy tropical fruits for breakfast and can listen to the surf gently crashing ashore below. “Dorothy, wake up!” yeah, time for vitals again.
 

Oh, and look at the time.  The nurse is in her pretty blue gown and has a bag of clear fluid that has, yes, you guessed it, toxic chemical goodness. And no, it has not even a vague hint of pineapple, mango, or coconut aroma to it! Damn!  Hook me up…and I’ll take the graham crackers and 1% milk with my chemo tonight, please.  This is room service at the ‘other Club Med’ where only the coolest of cucumbers come for their destination medication staycation – the premier location, of course!

Be well, stay strong, and much love to you all…and enjoy your gourmet graham crackers and milk!

Today’s Music is courtesy of Natasha Bedingfield – Pocketful of Sunshine

 

I got a pocket, got a pocket full of sunshine
I've got a love and I know that it's all mine
oh, oh, oh
Do what you want, but you're never gonna break me,
Sticks and stones are never gonna shake me
oh, oh, oh

Take me away (take me away)
A secret place (a secret place)
A sweet escape (a sweet escape)
Take me away (take me away)
Take me away (take me away
To better days (to better days)
Take me away (take me away)
A hiding place (a hiding place)

I got pocket, got a pocket full of sunshine
I've got a love and I know that it's all mine
oh, oh, oh
Wish that you could, but you ain't gonna own me
Do anything you can to control me
oh, oh, oh

There's a place that I go
That nobody knows
Where the rivers flow
And I call it home
And there's no more lies
And the darkness is light
And nobody cries
there's only butterflies

The sun is on my side
Take me for a ride
I smile up to the sky
I know I'll be alright

The sun is on my side
Take me for a ride
I smile up to the sky
I know I'll be alright

Frequent Flier

In my previous professional life, I used to do quite a bit of traveling. I have a special portfolio of sorts where I keep all my frequent flier and hotel reward program cards. If you’re one of those road warriors, you know the drill when you check-in for a flight or a night’s stay at your chosen hotel chain. They see the gold or platinum colored card and they smile and thank you for your loyalty and give you the fresh baked cookies or other perk that goes along with the program. It’s kinda nice actually, especially if you have to be away from home for days on end.

"Just a spoon full of Starbucks helps the chemo go down....in
 the most unlikely way!" Starbuck's courtesy of my sister, Lynette
(big hugs). We won't be giving up our day jobs to be songwriters
 any time soon, but we do have the tried and true family warped
 sense of humor! My nurse of the day, Carol wearing the latest in
chemo blue fashionwear.

Now, if my calculations are correct, I have 31 days here at the Hotel California, one of the club ‘med’ chains where you can check-out when the doc says it’s OK, but you never really leave.  I keep coming back three times a week when I’m not inpatient and I’m bedding down on night number two for another one of those extended stays. My travel plans have me checking out Sunday morning if all goes well. I don’t know if that will put me over the line for the platinum level rewards yet. If I were to guess, I would say it does since I have the nice room, so they must have sent the special fru-fru card in the mail. No cookies on check-in though, but the room service is pretty nice. Once I finish up in Seattle, I’ll no doubt have the coveted black card! Not too many of us get that one…and honestly, who would want one?

There have been a lot of things I’ve wanted and when I got it, found it wasn’t all that it was cracked up to be. I can remember a quotation on Mrs. Van Rosendaal's (my 9^th grade health teacher ... impressed I remember her name?!) chalkboard that pretty much put that sentiment in a nutshell: Far better to receive not what one wanted than to receive what one wanted not.” That’s true on a number of levels. Very clearly, I didn’t want to be a ‘frequent flier,’ so to speak, at the hospital, but there have been a number of silver linings I’ll write about as I am able to list them out. The term, ‘pay it forward’ has been poignant for me as I’m seeing so many of the things I’ve done both in my recent as well as my distant past coming back to surprise me in so many wonderful ways that I continue to be astonished. People’s true colors have shone through – thankfully, most for good, but some have risen far above what I could have conceived. For lack of a better term, I feel truly blessed, especially considering the extreme circumstances.

Now that I’m physically attached to an IV pole that has the yellow chemo bag ensign only a few hours a day, I have been wandering about the hallways and tunnels connecting buildings in the Veteran’s Administration Healthcare complex. I’ve seen a lot of people who are in pretty bad shape and not all of our wounds are visible. Some of our guys are returning from war where the scars are in their minds, some are amputees, some are like me and battling a chronic or other long-term illness, some are traveling great distances to be here and just trying to get that ache taken care of. You can see it on the faces and that of their loved ones. And then there are those you don’t see.

Of the many evenings I spend here, weekends are generally when the patients who need a little extra attention or are en route to another facility show up in the acute care ward where I am. My first weekend as an inpatient was in a semi-private room and my roommate was an older gentleman who had broken his hip and was suffering dementia. Every single exhaled breath was a moan. I didn’t sleep well that night. I came back Monday for aggressive chemotherapy and that first weekend brought another veteran suffering dementia who didn’t have the presence of mind to use the nurse call, but rather shouted for help. Ear plugs were required for sleep that night. Again, last night, my next-door neighbor wasn’t suffering from dementia, but he could out-curse any sailor I ever met. I had heard him shouting for a nurse earlier in the day, but about 11:30 pm, he was at it again and even though my door was closed, he was shouting loud enough for me to make out every word, every epithet, and every threat. My naval officer training was pushing its way up and after about 30 minutes of his tirade, I was ready to walk next door and find out who thought he was the hospital’s most important patient, but about midnight, it finally quieted down.

Today, it has been mercifully quiet.  I can only assume that he has been given the extra milligram of the pain medication he had been demanding…or a lovely placebo. That, of course, makes me wonder truly what it was that he wanted: was he, like so many veterans here, alone and in severe need of someone to give some attention or was there some legitimate pain that needed relief? Or perhaps a bit of both?

Because so many people on staff know me by name now, it’s not uncommon for them to stop by and chat me up. One of the administrators who takes the brunt of people like the man who threw the temper tantrum yesterday has much more patience that I do with that kind of behavior (obviously the person for the job!) talked to me a bit today and put the event into perspective without going into any details. It drove the point home that this particular Club Med is for healing, even if sleep isn’t a high priority! It drove home just how compassionate and longsuffering the staff is. That’s something I knew already, but the people that are hard to understand, hard to communicate with, or hard to placate prove that there’s an unwritten part of the job description for the nurses and med techs that transcends mere compassion and extends to a kind of love for one’s fellow man that is nothing short of awe-inspiring. I’ve seen it, I’ve experienced it, and I’m grateful for it.

This isn’t something I asked for as a frequent flier, but it took being one to really grasp it both in the big picture and in its many nuances. It’s more than knowing someone’s name; it took sharing the vision of hope in a child; it took mingled tears of losing a patient, of surviving one’s own cancer, of the promise of retiring in good health; it took sharing a smile, of our mutual humanity. I can’t say that these difficult patients will understand the kind of commitment that the people who work in health care have for their patients and their career, but you can be assured it’s completely devoid of politics and completely full of the qualities that allow for healing and for a thriving and healthy community.

Today’s music is a blast from the past, but the lyrics seem to be both a tribute to my medical professionals here as well as a reminder to myself.  Argent’s Hold Your Head Up, originally released as a single in 1972.

And if it's bad
Don't let it get you down
You can take it
And if it hurts
Don't let them see you cry
You can take it

And if they stare
Just let them burn their eyes
On you moving
And if they shout
Don't let them change a thing
What you're doing