Counting The Cost

In 21^st century America, we live in a world of ease, of amazing luxury, and remarkable freedoms. A quick visit to any number of countries we label as ‘third world’ would make even the most squalid single-wide trailer – ahem, mobile home – appealing. We’ve seen the pictures in National Geographic, we’ve heard the emotional appeals from well-heeled celebrities, and for all the best of intentions and intense passions, we essentially live our lives oblivious to what those conditions are like. Reality is, we’re pretty much oblivious to most things outside of our suburban cocoon. We’ve come to take quite a lot for granted with little or no sacrifice.

I certainly wouldn’t begrudge someone a life of ease, but I wonder sometimes if we’ve been lulled into a state of complacency that numbs just enough to keep us from moving to any kind of response.  We move in a routine that would make Pavlov jealous, salivating for the next shiny object – unaware, unconcerned, or convinced that we’re somehow entitled. I’ve struggled with bigots, bumper-sticker patriots, and politicians who perpetuate their own version of a myth of hypocrisy, but the frustration I experience I can only relate to others who share my sense of idealism. And of course, idealism is fraught with its own shortcomings as well, I fully recognize!

I’ve been trying to reconcile how so many of us glibly go about our daily lives without giving a second thought to something as grave as Memorial Day. The day that was established to remember and honor our war dead has been essentially reduced to the day demarking the beginning of the summer vacation season. It’s now officially OK to wear white, to go to the pool, to throw a steak on the barbecue, or to take the kidlins to Disneyland. Now, again, none of these things are wrong, of course. It’s just that like the suburban cocoon we’ve constructed around ourselves, we’ve conveniently put the proverbial blood, sweat, and tears out of our consciousness and relegated our patriotism to a car magnet that says something about supporting our troops. For the low, low price of a car magnet, we can assuage any guilt we have for our life of ease and we can just pull the thing off when we want…or we can put something on our Facebook page for free. Convenience abounds!

I raised my hand and took my oath of office as a commissioned officer during the Cold War. We played global footsy with the Soviets and their satellites, never knowing if the ‘bubble would go up’ and start another world war.  When Mr. Gorbichev tore down the Berlin Wall and ushered in a new period of uneasy peace we came to know as Glasnost and Perestroika, some new challenges presented themselves. I remember some hairy periods on active duty which included a deployment to the former Yugoslavian republics in the early 1990s. My battle group was headed toward the Suez Canal to join the folks in the Persian Gulf, but was turned back at the last minute when things ended. I can’t say that I was disappointed about that, but like any other veteran, I wrote a blank check to the government – your government – that essentially said that it could cash it up to and including the value of my life if need be over the course of my eighteen years in uniform. Because I’m writing this little missive today, the amount of that check wasn’t fully cashed, but there are tens of thousands of soldiers, sailors, airmen, and Marines who did, in fact, endorse that check. And they are the ones that I think about today. 

I’ll admit I’ve never been to a veteran’s cemetery to lay a wreath or do anything we might otherwise consider traditional on a day like today, but as I’ve been taken care of by the Veteran’s Health Care System, those years in uniform are being lauded regularly by everyone I meet and it’s a sobering, humbling privilege I finally am faced with.  Up to this point, I shrugged it off as something akin to “Aw shucks, ma’am, I was just doin’ my job.” And honestly, I quite often reminisce back on those heady days in the cockpit, on the bridge of a warship, or in the blue lights of the Combat Information Center for the Destroyer Squadron as a rush. It was exciting. It is what I was meant to do. Bravado aside, it’s no less a calling than so many other professions.

Now that I’ve been out of uniform since 1999, I see the military for what it is – a privilege to serve. Perhaps the term, serve, isn’t in vogue, but service is exactly what it is. It’s tough, gritty, and demanding with lifelong rewards...and lifelong fallout. I have lost Naval Academy classmates to war and acts of terrorism and to aircraft crashes; I have friends and family who have borne the scars, both physically and mentally from combat experiences; and while there’s a pretty well-established link between cancer and radiation and certain chemicals, I’d do it over again. It’s what I was meant to do and from what I can tell from talking with many other veterans, there’s a shared camaraderie in that. It’s obviously not universal and when you’re in the thick of it, precious few of us are thinking lofty thoughts about service, but that 20/20 hindsight kicks in somewhere along the way.

I don’t want to be the buzz kill of the Memorial Day party and I wouldn’t want to tell someone to feel something they don’t, but my hope for our troops on the front lines is that they come home as soon as possible; that we as Americans stateside never, ever forget the sacrifice they’re making regardless of how we feel politically about our involvement overseas. For our war dead, may the memories of their lives be honored by us all as a nation, community, and neighbor, taking care of their families and in celebrating their lives, may we lift a glass in their salute and as a friend of mine puts it, “live the dream.” How better to prove a life well lived and given than to prove that it wasn’t offered in vain!

Today’s music – I Remember You by Nat King Cole

Was it in Tahiti?
Were we on the Nile?
Long, long ago, say an hour or so
I recall that I saw your smileI remember you
You're the one who made
My dreams come true
A few kisses ago
I remember you
You're the one who said
"I love you, too, I do"
Didn't you know?
I remember too
A distant bell
And stars that fell like rain
Out of the blue
When my life is through
And the angels ask me to recall
The thrill of them all
Then I shall tell them
I remember you

 

Oh, The Places You’ll Go (with apologies to Dr. Seuss!)

This is my sixth hospitalization since I got the stunning good news that I was part of an exclusive club of cancer survivors.  It’s my understanding that the day you get your diagnosis, you are a survivor the same way you are an alumnus even if you don’t graduate.  That doesn’t sound so good, does it?  It applies nonetheless.  I’m both, yet of different institutions, I guess. So, I’m in the hospital for my third round of consolidation chemotherapy.  That keeps the cancer in remission and ready to receive my bone marrow transplant should an approved donor be ready to step up to the plate and pass on some stem cells to me.  According to the transplant unit in Seattle, that should be happening roughly within the next 5-9 weeks, but since this is the VA, it might take a bit longer. Suffice it to say, I’m really, really ready to get this process over and done with and return to some modicum of ‘normal,’ regardless of what that new normal looks like.  Simple things like going to work, enjoying a night out, and all the many things I took for granted would be really nice.  I’m still looking forward to seeing what’s on the other side of this tunnel as well. You don’t go through this kind of ordeal and not find the silver, gold, platinum, and other linings that have precious little to do with metals and everything to do with character.

I think it has quite a lot to do with patience and perseverance if my current experience has any bearing on the long-term. It would be far easier to put up with the endless needles, medications, inquiries into my bowel movements, institutional food, and the waiting if the weather was cold and miserable outside, but the spring has sprung, the temperatures are perfect, and well…I’m staring at the four walls of a pastel pea green hospital room. And when you’re looking at the same sorts of things day in and day out, your mind wanders to many places it wouldn’t otherwise go.

Oh, the places you will go!

If you’re a Dr. Seuss aficionado, you’ll recognize the allusion. I think it’s one of his finest books because it applies to both the young and old at heart.  I’ve given it as a gift to graduates and have treasured it myself because it’s not just the silly, whimsical pictures and rhymes, but a story of experience. So, while I have the luxury suite at the VA again – damn the bad luck! – I have done a lot of observation.  Now, without further ado, here’s the fun that I found out about room 2C16!

-          There is apparently a ghost haunting this room. I’ve been asked if I saw him since I tend to be awake in the wee hours of the morning…but alas, no, I have not seen anything other than the usual, although I have to admit, it would be pretty cool! One of my night nurses insists he has seen him and there are two other nurses, one of which is on a different floor and one that works this one that tell the tale of how the ghost moved a chair behind a patient who would have otherwise fallen while the attending nurse was getting the bathroom ready for the patient’s shower.  Side note: the ghost was attributed to monkeying with the nurse call in a locked room down the hall the other night (cue the spooky music). I’m tempted to throw on a sheet, take the walker off the wall, and after hitting the nurse call, just stand out in the hall until he sees me…just for shock value. Then again, it seems to me that he’d get the last laugh at my expense!

-          Although I am one of the very few patients who is up and around and walking, I was labeled a ‘fall risk.’ It was this pretty star outside my room and I thought I had been promoted to admiral, but alas, no.  The safety tsar was out and about and we were all fall hazards.  I found out if it’s a shooting star, you’ve fallen at some point during this hospitalization.  No special notation this time around.

-          Chemo has the same special property as asparagus and coffee:  can you guess?  OK, it makes your urine smell really foul. And I note that my average bladder capacity is 200 cc’s, maybe 250 if I’ve had to hold it.  When you have to empty the contents into your bladder for constant monitoring, you note these lovely details. Aren’t you glad you now know that?

-          The Salt Lake Tribune sells out about 6:00 a.m., earlier on weekdays.  If you want a paper at the VA after then, you are out of luck!  Note to the Trib: you could sell more papers, especially at the lobby where people are waiting to visit patients!

-          It doesn’t make sense to put salt on my food trays but to withhold ketchup. Ketchup and eggs, it’s what’s for breakfast!

-          My hair is starting to come back in on my arms, chest and moustache area.  I’m not sure if the hair on top of my head will look like Gollum or just be thin at first.  The jury’s out there. When I voiced this to my hem/onc, she said in her most diplomatic and matter of fact voice, “Well, it will probably fall out again.” How’s that for encouragement? And…she’s probably right.

And that’s where my mind has wandered during this rather quiet and medically boring week at the VA Hospital. The medical and hem/onc teams are both in agreement that I should be discharged in a matter of hours and I like it when everyone’s on the same page!  I had the great good pleasure to spend my time with my friend, Isaac, whom I met when I was inpatient during my last consolidation chemo.  He introduced me to his wild and crazy American Legion cohort and sparked a real desire to be around other veterans helping veterans.  It’s more than just a nice sounding slogan (and I honestly don’t know if it is or not), but rather it just feels right.  In chatting with each other, even though there is more than 20 years difference in our age, the patriotic values we could share were authentic and not the ones defined by bumper stickers. Although I’d far rather not run into him or other vets in the hospital, I was happy to run the course of my 3-hour chemo infusion with someone who shared my values devoid of politics and loaded words. With the Memorial Day weekend here, it meant all the more as I take a look around the hospital and see flags everywhere. It feels good to be a veteran and that, at least here, my service has stood for something real. That’s not to say that it doesn’t outside these walls, but here, I’m reminded of it daily and although I can think of almost any other place to be, I’m very, very grateful to be here.

I have some thoughts on this weekend that have precious little to do with fashion sense and the official opening of the community pool. In the meantime, I hope you’ll take some time and find a veteran or the family of one and thank them for their sacrifice. I can tell you that it means the world to have someone remember you. My sincerest thanks, gratitude, and sympathy go to the families of servicemen who have made the ultimate sacrifice.

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

The YouTube video today is an interpretation of Dr. Seuss’s Oh, The Places You’ll Go. It’s from Burning Man 2011, so it’s a bit avante garde, but I like it.

 

You can look at this one, read by John Lithgow from the original book.

You Don’t Have to Find Out You’re Dying to Start Living

I originally wanted to title today’s post, You’re So Vein because my veins have been getting smaller and scarred with each successive stick. Jason, the very skilled nurse that installed my PICC line today now has a certain Carly Simon song of the same name that has effectively embedded itself in his cerebral cortex thanks to yours truly. So, I’m now sporting my shiny new PICC line awaiting chemo and all the other fun-ness that goes along with it. But, I do want to take a serious turn at this point, so don’t mistake my humor for irreverence. If you’ve read anything prior to this post, you know I have a streak of flippant humor that has helped me cope through the seriousness of what it is I’m working through.

I have acute myeloid leukemia – a form of cancer that affects my blood production. The day I was diagnosed, I was given three months to live if the cancer went untreated.  That three month mark is today and I’m very much alive and I feel as good. Today is also the beginning of my third cycle for chemotherapy or what I so affectionately call toxic chemical goodness. I was admitted this afternoon and barring any unforeseen circumstances, I’ll be heading home on Sunday and will resume the waiting game for a bone marrow donor. Because of my relative young age and insistence on keeping physically active, I’ve really been doing rather well.

This is the sixth hospitalization since I found out I had 50% cancerous cells in my bone marrow and was living on borrowed time. Looking back over the past three months, I’ve obviously learned a tremendous amount about cancer and leukemia in particular; I’ve learned a lot about human kindness as well as human nature; and I’ve learned quite a bit about myself.  Looking at yourself through cancer-colored glasses, the pretense falls away and you see yourself for who you are. You also see others much more clearly. The honesty is, in many ways, brutal, but it can be refreshing and bring you peace if you take in the whole picture rather than keeping the focus on yourself. In that way, cancer really is a gift. Just like any gift though, we have to be willing to receive it – accepting both the responsibility as well as the benefit for its ownership. There is no re-gifting of this bad boy.

Cancer has a way of forcing you to confront reality, to see things for what they are. Barriers drop and when smiles come, they tend to the real deal. Pretense and pity find no stronghold and your priorities become pretty apparent. For some, there’s an overwhelming, “why me?” In my case, I’ve found that cancer has intensified my sense of gratitude and even the small things that I had otherwise taken for granted now assume a whole new character and meaning. I can’t say that impending mortality is what drives this heightened awareness, but in the grand scheme of things, it’s fair to say that when faced with a life-threatening illness, there’s an element of time that pulls it out. I’ve said it in different ways in past postings, but in honor of Zach Sobiech, who passed away today at the ripe old age of 18, I’m using his words: “You don’t have to find out you’re dying to start living.”

A friend of mine from Minnesota had posted a music video on Facebook that Zach had made and I used it as my music of the day on my posting on April 3. In the same way I use writing and humor to cope and to express myself, he uses music. I felt an instant connection in that Zach was dealing with a cancer and his attitude was positive and contagious. And that was just from the video clips I saw. In his case, he has a bone cancer called osteosarcoma. I found out the sad news today that he went down today in his fight, but you can be assured that Zach Sobiech did not lose. While he had some very bad days, he had some very good days as well, and from what I could see, his impact was felt far and wide and for an 18 year-old, he leaves an incredible legacy. He fought his battles with such grace and good humor and we could all learn a thing or two from him.

It’s another variation on the theme: “I don’t control life, but I control how I react to it.” It doesn’t mean simply allowing life to happen, but rather living life. I am saddened that Zach’s life was as brief as it was, yet he packed a lot in those eighteen years! I don’t know how many more years I have. I may have a few or I may end up outliving my grandfather’s extraordinary 99 years. Who can say? What I can say is that the years I do have remaining are going to be even more fruitful and extraordinary than the ones I’ve lived; and I’ve done an awful lot.

It doesn’t take a bucket list to do what’s important before we die. It just takes the will to really live. Don’t wait for someone to tell you that you have an expiration date. But don’t take my word for it, listen to the wise-beyond-his-years Zach Sobiech in this video.

 
Click here to see the celebrity video from the song he wrote.  You can see part of it in the video above.

 

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

I'm the Guy

"Ultimately, it’s up to you, Mr. Park.” The doctor was looking at me with a cross of expressions – one that was sympathetic and the other of impatience.  As much as I wanted to leave the shrinking four walls of the hospital, leave the pain of the endless missed sticks into my shrinking veins, and of course my shrinking patience, I’m no doctor and the reason I came to the emergency room Thursday morning was in compliance with my discharge orders and there were dire precedents for doing anything less than what I did.

Flash back just 24 hours, one of the more senior hem/onc doctors and I had resolved what had been a rather terse exchange from the previous day. He was of the opinion that I should remain in the hospital until my neutrophil count exceeded 500; the medicine team stood by their opinion that 48 hours without a fever or positive blood cultures while treating with broad-spectrum antibiotics was sufficient. I felt like  I was backed into a corner where my decision would pit one group against the other and when I added the pain of having yet another IV blow out and the nurse missing on reinserting a new IV needle, I was at the edge of tears again. I'm a tough stick right now and I know that, but any way you slice and dice this one, a needle stick just plain hurts. I wouldn’t leave against medical advice, so I told the doctors to work it out and present me with their combined counsel and I would go with it…and the doctor gave me exactly that and still made me choose what to do.

This has become more and more what cancer has done
to me...or for me. I'm responsible...I'm the guy.

I elected to go home.

At home, I had oral antibiotics, antivirals, and antifungals; and I would be clear of coughing orderlies and hallways of sick people; and I would be free from the needle sticks! It was my call. I’m the guy who is ultimately responsible for my own treatment.

On Wednesday, I met with the assistant to the hem/onc who has been overseeing my care since diagnosis. My white count was in the normal zone and she was happy with my recovery.  She pointed out that one of the aptitude tests that indicated my suitability for transplant had to do with waking time out of the bed; 0 with the most, 5 the least. Even at age 50, I’m still among her younger patients and she confirmed that being physically active was a major factor in leaving the hospital as quickly as I have. Having gone through three rounds of chemotherapy, my immune system has reacted with some regularity, so working directly with the physician’s assistant today, we were able to come to agreement on when to start the oral drugs at home and prevent another unplanned visit to the ER. Once again, I’m the guy. I’m responsible. It was because of taking charge that I had preventive drugs at home after my first consolidation round of chemotherapy. I asked about it and within an hour, I had a sack full of big, white horse pills with a foul aftertaste.

It’s far too easy to relinquish the many decisions to someone else who is the expert, but when push comes to shove, it’s my body. I have no desire to go through years of medical training, but I absolutely want to understand what’s happening to me in terms that I can understand. When the doctor in the sterile white coat told me I had leukemia, my mind couldn’t process that pronouncement other than, “this is bad” and it had something to do with white blood cells.  Since then, I’ve read a lot from books people have given or referred to me, looked at a lot of Internet research, and asked a whole lot of questions of nurses, doctors, survivors, and other subject matter experts. Without a doubt, it is the firehose method of learning.  Then again, when it’s happening to you, that otherwise impossibly steep learning curve becomes scalable and even the complicated words become relevant and their pronunciation is now possible.

Now, when a doctor tells me he’s prescribing a medication of any kind for me, I ask the name of it and what it does as well as the side effects. On the same note, I tell the doctors everything. We discuss what’s going on because I’m the guy. I won’t tell them how to do their job, but I’m ultimately responsible for my well-being, so if there's any input, I'm going to make it and I have to be willing to make decisions as well. Part of that responsibility is communicating to others my expectations. The major bone of contention I had with the doctor with whom I had a bit of a row was a lack of communication. I had not been told that my blood counts had fallen to the point I needed to be taking the medications I was prescribed. Had I known, it’s very likely my visit to the ER and all the other unpleasantness that went with it would have been totally unnecessary. I can’t say that with all certainty because I’m not a doctor, but during the previous cycle when I had a call each day after my labs were processed, I knew when to start the antibiotics, so I had many, many medically boring days-a good thing! Today, I received one such call to tell me my blood counts were in the normal range. It took less than a minute and while no catastrophe was averted this time, I was comfortable knowing that I was OK all around. It definitely takes some pro-active involvement and from everything I’ve been told, no one minds the questions.

That’s also why I am bent on physical therapy at least three times a week. I want to be in the best possible shape when it comes time for my transplant. There’s no secret it will be an extremely demanding procedure, so I need to be strong. I’ve been pretty vocal about being upbeat and positive because everything I’ve read and heard tells me that attitude plays a very important role in how well and how quickly our body responds in healing as well. I have to do whatever I can to get strong and stay there, mentally and physically.

This cycle is coming to a close and I go back in for round 3 of consolidation chemotherapy on Monday. I was feeling too good and enjoying the sunshine too much to have this fantasy last too long! This entire round has been rough. It was a painful inpatient stay and I felt like I had some emotionally taxing days in between, notwithstanding this latest visit to the ER and being admitted afterward. It was filled with a lot of life lessons in the meantime, many of which I’d really rather not learn…or re-learn. I have one of those passive-aggressive streaks and I have a way of shutting down when emotions engage. Unfortunately, cancer has been chipping away at that too. What kind of unhealthy coping mechanism am I going to be able to resort to if those are gone? Nothing about this is fair, is it? Ah well, I am the guy and I am responsible, after all. Gotta stand up and face it head on.

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

Music for the day is Stand by Rascal Flatts

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you've lost your fight
But you'll be alright, you'll be alright

‘Cause when push comes to shove
You taste what you're made of
You might bend ‘til you break
‘Cause it's all you can take

On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, then you stand

Life's like a novel with the end ripped out
The edge of a canyon with only one way down
Take what you're given before it's gone
And start holdin' on, keep holdin' on

‘Cause when push comes to shove
You taste what you're made of
You might bend ‘til you break
‘Cause it's all you can take

On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, yeah, then you stand

Every time you get up
And get back in the race
One more small piece of you
Starts to fall into place, yeah

‘Cause when push comes to shove
You taste what you're made of
You might bend ‘til you break
‘Cause it's all you can take

An Open Letter to Patient Liaison - Salt Lake Veterans Health Care System

I had some terse words with a doctor yesterday. When he made rounds today, I was happy to be able offer feedback as to exactly why I was angry with him. No doubt, there was disappointment in not going home in the 48 hours I was initially promised, but at the heart of the matter, hearing without listening and simply spouting off medical protocols won't win the day with me. This same doctor did me a great favor my first week of treatment by insisting I get engaged, making this an interactive process. It shaped the way I interacted with everyone since. When I pointed that out and told him that was what I needed yesterday, I think I made my point and he thanked me as he left. And while I was genuinely angry, and honestly still feel a bit steamed about the whole thing, I consider that a success because at the end of it all, we're working together.
 
It's far too easy to complain and unfortunately, fixing even the appearance of a wrong too often eclipse the positive efforts that result in a stellar performance. Feedback for people who really do things that are genuinely praiseworthy seems to be glossed over - it may come across a bit less...sexy to pat someone on the back than to solve a problem and far too often, the people that are going above and beyond the call of duty continue soldiering on without the recognition they deserve because that's just who they are.
 
When I've come across someone who is doing a great job, I do what I can to make sure they know it from me directly. Where possible, I've sought out their supervisor to make sure that person knows that they have a superstar working for them. It's how I roll! With that in mind, it should come as no surprise that I've been pretty vocal from the get-go about how impressed and humbled about how well I've been treated at the SLC VA Hospital, but to put the rubber to the road, I'm naming names and am hand-delivering the letter at the bottom of this post to Patient Liaison (with copies to the places where I hope those who have made such a notable difference will get the recognition they deserve from those in a position to do so within the VA system here in SLC).
 
The nursing staff is the impetus for my letter and I didn't work with some who may not be listed because of restrictions on who can administer or be near chemotherapy drugs and I don't have a list, but I want to give a special thanks to these awesome nurses:

- Ward 2 East (Acute Med): Carol, Hazen, “KJ," Marc, Stephanie, Tammy, and Tara
- Ward 2 West (AMU/Hematology-Oncology): Brenda, Carlyn, and Trevor (also in the ER); Nyna was the first person with whom I had any real contact after my diagnosis. She had the right amount of ‘bedside manner’ and the facts I needed. She has also been my point of contact for my bone marrow transplant and despite my being her first transplant case, been tireless on pushing the bureaucratic cogs in the machine.
- Blue Clinic: Kathy
 
Quite often, the health techs were the ones who found a way to keep me smiling when I just didn’t have it in me. The many, many details they take care of often were the ones that made me feel human. And let’s face it, it takes a special skill to do that when taking vitals in the wee hours of the morning. These folks are on their way toward their RN/LPN and I want to give them a special shout out as well:
 
- Ward 2 East (Acute Med): Dani, Greg, Lindsay, Lizzie, Nikki, Robert, “TJ”, and “TK”
 
I would be remiss if I didn't recognize other people who made my many days here a bit better:
 
Lab (Blood Draw)
- Rob, Roxanne, and Walt

Physical Therapy
- Charlie, Dayna, Dana, Pablo

Connie has helped me so much in navigating within the system and directing me where I should go when I just needed answers. Between paperwork and emotionally working through a life-changing diagnosis with a lot of open-ended possibilities, she has been the bridge to sanity on some days where I was just overwhelmed

Yeah, there will be many, many more thank yous in the days to come, but for today, I want to give my sincere heartfelt thanks to these people by name. Take the time to thank people...you may just make their day!

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

H. J. Harrer
Patient Liaison
Salt Lake Veterans Health Care System
500 Foothill Boulevard
Salt Lake City, Utah  84124

Dear Mr. Harrer:

I am writing to you directly rather than filling out a survey card because there have been many people who have made an incredibly positive impact and a card wouldn’t be adequate.  Having been an inpatient five times so far since February 21, I can tell you that the level of service has far exceeded anything I could have hoped for. Certainly the VA staff provides genuinely kind and compassionate care, but I also felt that there was a concerted effort to involve me in my own healing process rather than just a passive participant. Sure, I’d expect anyone who works in the medical field to have some degree of caring in their character, but after 40 inpatient days so far, I have come to know quite a few nurses, health tech, clinicians, phlebotomists, and therapists throughout the hospital and have been truly impressed.

When I received my cancer diagnosis, I was overwhelmed with information with less-than-pleasant sounding names and ferried off to endless tests, pokes, and procedures, some of which were downright unpleasant and painful. I may have an engaging if not offbeat sense of humor, but I was more than just a little scared underneath the repartée. Everyone with whom I met during those crucial first days in the Acute Care Ward answered the many questions my family and I had; and they treated me with such kindness that it brought me to tears. When that inevitable first meltdown happened, there was no shame imparted. I was comforted with a warmed blanket and my much needed dignity was very much intact. I went through a lot those first three weeks where a high degree of competence and professionalism would have sufficed, but the gentle hands and personal interaction from the staff here gave me solace and comfort when I needed it most.

I would appreciate the opportunity to tell you in-person and at any level of detail you would like specific instances of the staff going beyond routine. I’ve been vocal to everyone – both inside and outside the VA system – how pleased I am with the care I have received, but I want to ensure the people who have attended me and so many others get the proper recognition for what can only be described as love for their patients and their life’s calling in medicine.

 

Very Truly Yours,

 

Todd Park
SLCVHCS Patient, Ward 2 East
Former Lieutenant Commander, US Navy

cc: Human Resources | Acute Care | Ambulatory Medicine | Laboratory Services | Physical Therapy

Welcome to the Hotel California or Who Stole My Neutrophils?

OK, sing it with me, you children of the 60s and 70s…

And still those voices are calling from far away
Wake you up in the middle of the night
    just to hear them say
Welcome to the Hotel California
Such a lovely place

I’ve been awake in bed since about 3:00 (as usual), staring at the ceiling, going through all the news that’s fit to post on Facebook, and taking my turn on Words with Friends. The difference between today and yesterday is that a neutropenic fever landed me in the Emergency Room yesterday morning. I got lots of attention, lots of needle sticks and people sorting through just about every testable bodily fluid (thankfully they spared the spinal fluid!). Then, they took me to a special room for people with platinum level frequent flier cards and invited me to spend a night or two. Isn't that special?

What is neutropenic fever you might ask?  OK, let’s start with what neutropenia is.  The toxic chemical goodness that is chemotherapy is designed to kill off the fast growing cells. That would be the cancer cells. You’ve all seen the movies and likely had friends or acquaintances that sport the ultra-low maintenance hair do.  The system that produces hair is typically one of those fast-growing cells as well, as I understand it, which is why the shiny pate and smooth look over the rest of our bodies is an alarming side effect – thankfully not painful, but for better or worse, it sure gets people’s attention. In my case, it’s a patchy thing, so if I let it grow back on my head, about 15% of it will show up and I’ll end up looking like Gollum from LOTR…and at about 1/8” it starts to get uncomfortable with the beanies, so I am doing something I thought I would never be doing: shaving it back down to the nub.  I’m not good at it, so I almost always wear a hat of some sort.

One of the other predictable things that happen is that my blood chemistry goes haywire. My platelets and whole blood need to be replenished by transfusion; and by design, my white blood cell count goes down for the count as well. It got down to 0.01 per/μL. I was told that the results were delayed because they were barely detectable. Lovely, huh? Now, there are a few different kinds of white blood cells, but without going into all the differences, just think of the ones that are important to me specifically in this case are called neutrophils. Neutrophils make up a fraction of that total white count - and it varies. When the total neutrophil count goes below 0.5 per/μL, then that condition is referred to as neutropenic.

It’s expected, but during this time, I need to be a hermit and when I do go in public, I’ll be looking like a misplaced surgeon and scaring small children. The part of the 28-day chemo cycle where my numbers tank is called the ‘nadir’ for obvious reasons.  I take antibiotics and antivirals as a preventative and there are other precautions I have to observe during this time as well. For example, I can’t have fresh produce unless it’s inside the peel (bananas, oranges, etc.), no fresh cut flowers, soft-bristle toothbrush, no blade shaving, and I obviously can’t be around anyone that is sick. About this time, my immune system turns the key and starts up again and my counts start climbing. Any remnant of cancer cells should be dead and my immune system keeps me healthy.

I also have to watch for a fever of anything at 100.3 or higher. Just like any infection we have when leukemia is not in the equation, a fever is a symptom of something the body is trying to fight off, but in my case, my warrior white blood cells have been wiped out by chemical weapons, which makes even a little infection possibly devastating.  That’s a long way around to bring neutropenic fever into context and why it’s a big deal.

So, yesterday, I woke up in the wee hours of the morning as usual and checked my temperature. It was 99.3 as it had been all week.  I got up, took my meds, and read a while, waiting for the sun to come up. Ever since my first active duty command, I enjoyed having the watch or a flight that was pre-dawn. Sunrise and sunset have always been one of those things that are just cool to me.  The colors, that these cycles of the sky ‘center’ me, the sense of permanence, I don’t know, maybe it's that nautical part of me that knows where I am based on celestial movements above...or simply that I just feel good when I take the time to watch dawn or dusk, but especially dawn – it’s quieter! After a light non-dairy breakfast (can’t have dairy within 2 hours of taking one of the antibiotics…unless you’re vegan, try working that into your menu!), I was able to take a nap, but woke up with a 101.7 fever – clearly over the line. I took a shower and tried taking my temperature again, but it was still there.  Time to take a trip to the ER. *sigh*

                Last thing I remember
                     I was running for the door
                I had to find the passage back
                     to the place I was before
                “Relax,” said the night nurse (uh…man),
                     “We are programmed to receive
                You can check out any time you like,
                     but you can never leave”

Yes, The Eagles Hotel California is today’s music…too appropriate, even if it's really the last line that resonates. I check out every day, but I never leave! Being tied to a place that is full of unpleasant procedures makes you weary, yet I can be truly grateful that the people there offset every bit of pain, suffering, and annoyance. I even ran into a nurse in the ER that attended me during my last transfusion. We had matching cycling jackets, which is kind of like you seeing every other car just like yours on the road and we had a six-hour long conversation which helped me feel more normal. He was headed out to the Boston Marathon the next day. I don't need to tell you how relieved I was to see him uninjured!  Pretty telling that even in other parts of the hospital, people know me. The guy who took my blood this morning came up from the lab and who would it be, but the guy who drew it Wednesday on my last scheduled visit. For me, although it’s an errand I’d rather not make, it’s like Cheers, where everybody knows my name…and if you’re in a position that requires critical and extended care like I am, there’s no better feeling than to walk in the room and have the nurses, the phlebotomists, the health techs, and yes, even the guy who empties the trash, look up and smile and call you by name! Yeah, more often I feel like this is the Hotel California (again for the last line of the song only), but the people? Well, it's Cheers...they’re awesome.

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

 

Post Script - My white count from the lab is back for the day: 0.8! (normal is 4.3 - 10.8 per/μL). We're making progress. Hem/Onc sez I can go home after 48 hrs with no fever or negative blood cultures). So, barring any unforeseen nastiness, that means Saturday afternoon. 

Post Post Script - Hem/Onc's boss changed the rules and won't let me out until my numbers completely recover to above that 500 mark on the total neutrophil. I am *not* a happy camper. In fact, when the doctor who shall not be named came to explain himself, if was clear he wasn't listening, just spouting medical jargon. At that point, I read him the riot act and dismissed him. It wasn't an argument I would win. The normally stoic guy winced. *sigh* I don't get riled easily and I hate coming off as a jerk (which I'm sure I did), but good grief! I hate when people don't talk to each other and honestly this whole hospitalization could have been averted had certain groups of people just communicated. Alas, we won't go there, but should said doctor come back today, we will discuss in detail so he doesn't just hear me, but actually listens and does something that shows responsibility. It's a beautiful day in the neighborhood!

Detours

Thanks to the phenomenon that is ‘chemo brain,’ I have resorted to sticky notes.  I have them all over my desk – my next grocery list, things I need around the house, and a list of topics on which I want to write, among others.  I use the lined sticky notes because my handwriting gets worse in proportion to my blood chemistry.  How many of you can say that? Then again, how many of you keep such close track of the little numbers? When I get one of those ‘eureka’ moments, I write down the gist of my idea and repost the sticky on the hutch next to my computer monitor. I actually have five topics, which is unusual. I’ve typically been staring at the ceiling at 3:00 am or watching the wall late at night hoping that inspiration will jump out of the paint and seduce me like some ethereal muse. Suffice it to say, I had planned on sitting down and fleshing out the ideas after dinner tonight before turning my brain off with a TV series on Netflix (I loathe commercials, so Netflix is my chosen alpha wave inhibitor … except at the Super Bowl, then it’s the only part of the program I watch. Go figure!).

I had arrived home after some physical therapy and a routine blood test and had finished writing out a paragraph of one of those five topics when to my annoyance, I got a call from the hospital asking me to come back right away because my platelet count was now low enough for me to require an immediate transfusion. One of the side effects of both leukemia and chemotherapy is that platelet count drops precipitously. That’s a problem because platelets keep you from bleeding to death. Normal platelet counts vary from 150,000 to 450,000 per μL. My count was just under 6,000. Sigh…OK, let me finish my lunch and I’ll come back. Another needle stick in the lab to ‘type and screen’ my blood (fourth time doing this) and then an IV in the AMU (ambulatory or outpatient ward) and another enjoyable time looking at the four walls searching for inspiration. They also made an appointment for me to come back the following day for whole blood and do this all over again, minus the ‘type and screen.’ From the time the blood products arrive, irradiated, platelets take about an hour; blood takes up to six hours. It can happen faster, but I didn’t have my PICC line in and that’s quite all right! On the plus side, every time I come back to the VA, it’s like Cheers. Everybody knows my name. I even get to choose my phlebotomist more often than not. Then again, all of these people are really well-practiced and I barely feel it…but hey, Walter is the man! Face it, we have our favorites. How many of you have favorite phlebotomists? Anyone? Yeah, didn't think so.

The outpatient rooms are set up with recliners or a couple of beds.  I figure if I’m going to be there, I want the bed in case I get sleepy, which is often these days. Since most people are in and out, they typically choose the recliners. Taking a bed, I don’t have to be exposed to someone else’s TV selection and I can read in quiet or just listen to music with my headphones with the lights out. Let’s make this as pleasant as possible! When I returned for my blood transfusion on Tuesday morning at 7:00, I got my blood chemistry and count at the lab and then up on the ward, got the same room; I took the bed closest to the window again and began the waiting game. About 10:30, they began the transfusion and by that time, one other patient had gotten his dose of chemo and a second was getting hooked up. I dozed a while and was awakened when the privacy curtain between the two beds was drawn. They brought me a lunch tray, so I took my headphones off and noshed a little.  I had been feeling a little tired because of the anemia of this stage of the chemo cycle and didn’t feel like eating all of it, so I put the tray back and read a while. It was at this point that the privacy curtain was anything but private and the conversation was one that I couldn’t avoid, no matter how I tried.

I assume it was a social worker rather than a doctor because no medical terms were used, yet this was the conversation I’d heard about. NPR’s Talk of the Nation.  The advertisement about conversations with patients about death on my local station, KUER, (shameless plug to my member station!) caught my attention, but I was a bit reticent to listen to it...yet, like a train wreck, I had to and now I was actually hearing one of those conversations through the curtain, dealing with quality of life issues, determining whether the side effects of the chemo were worth it, when to have hospice come to his home and when to begin palliative care. It was a very sobering conversation, to be sure, but the thing I noted from the person who was giving information, there was never anything that was less than hopeful and positive. I was impressed not only with the conversation, but in that I was even more at peace with and even hopeful about his and my own mortality both.

To illustrate these difficult decisions, my dad tells me a story of two friends he had known since childhood -brothers who, a few years back, received the identical diagnosis of terminal esophageal cancer, both given the same prognosis of six months to live. One elected to cash out his retirement and live out the rest of his life, doing what he had always wanted and spending time with loved ones. He died almost exactly six months to the day; the other fought the cancer to the bitter end with chemo, radiation, and surgery. The second, whom I remember as a young boy (pictured above with me as a 3 year-old), received his diagnosis just before his brother's death and won only three additional months, but spent a lot of that time in a hospital bed.

I also found out that I’m among a number of people who use a blog to get how we’re feeling out on the table, to talk about (and I’m paraphrasing, but it’s so accurate in my own story) trauma of painful exams and the nasty side effects of chemo, anxiety, funny and raw photos, and the love for our caretakers and admiration for medical professionals (Here’s the story from NPR – Why Patients Should Blog About Illness and Death ). It should come as no surprise that with the events this week my attention has been drawn to the full spectrum of life – from the day-to-day quality of life to its end.

There are lot of directions life takes us, and often it takes us on a wild detour that we couldn’t possibly foresee.  I sure didn’t anticipate the fork in the road that took me down the Leukemia Interstate Highway, but I’m cruising in the middle lane on a destination that I know will take me through Seattle.  Much beyond that, I don’t know. I get to spend a lot of time with people that I wouldn’t otherwise and meet still more incredible folks that would not be part of my circle. While it’s not fun spending as much time in the hospital as I do –both in and outpatient-it truly is like Cheers. Everyone knows me and they smile when I come in and it makes it that much easier to go through it all. I’m finding that a lot of people I didn’t know were friends have come forward and been present when I needed someone to just be there and hold my hand and others who have just faded away; and I’ve found just how very fortunate I am to have the extended family I do, and so much of it local! I wish I didn’t have to come to see everyone’s true colors and so vividly through the tears of leukemia, but…it’s what I have. Take a look-see at the people around you and see who just needs you to be there. Don’t wait for something catastrophic. What’s the worst thing that could happen? You get detoured off on some tangent and cement a really good friendship in the process.

Be well, stay strong, and much love to every last one of you!

Today’s music from Nickelback – If Today Was Your Last Day

My best friend gave me the best advice
He said each day's a gift and not a given right
Leave no stone unturned, leave your fears behind
And try to take the path less traveled by
That first step you take is the longest stride

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last
Leave old pictures in the past?
Donate every dime you had, if today was your last day?
What if, what if, if today was your last day?

Against the grain should be a way of life
What's worth the price is always worth the fight
Every second counts 'cause there's no second try
So live like you're never living twice
Don't take the free ride in your own life

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you had?

And would you call those friends you never see?
Reminisce old memories?
Would you forgive your enemies?
And would you find that one you're dreaming of?
Swear up and down to God above
That you'd finally fall in love if today was your last day?

If today was your last day
Would you make your mark by mending a broken heart?
You know it's never too late to shoot for the stars
Regardless of who you are
So do whatever it takes
'Cause you can't rewind a moment in this life
Let nothing stand in your way
'Cause the hands of time are never on your side

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you had?

And would you call those friends you never see?
Reminisce old memories?
Would you forgive your enemies?
And would you find that one you're dreaming of
Swear up and down to God above
That you'd finally fall in love if today was your last day?