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?

Somebody Else




 This blue jay used to light on his hand
earning its reward of a peanut. It was
a show he always enjoyed giving!
 

 

Today would have been my grandfather’s 100^th birthday. He was a great combination of wise soul, cantankerous curmudgeon, and if you pressed him, you might see an undercurrent of the compassionate ol’ guy as I remember him. The last few years of his life were marked with the typical maladies of old age, but from having spoken to those closest to him, the one that I think robbed him of his will to live was macular degeneration – he essentially went blind. The things he had grown accustomed to over his long, rich life were difficult if not outright impossible without his sight. I have no doubt that, had this happened to him even 10 years ago, he’d have found a way to ride that lawn mower in summer and clear the driveway of snow in winter. Last June at the incredible age of 99, his body and mind finally had a pow-wow and … well, I’m sure he just found something else to do in some other place. (Here are my thoughts from a year ago when he passed away).


So, although I’ve had anything but a medically boring day, my mind hasn’t been on me, but him. It has also been on the group of cyclists in Orange County, CA - Team OC - with whom I rode over 500 miles last June to raise money for HIV/AIDS. They’re coming down to the wire as I would have as well. Suffice it to say, I retired my number this year. Next year? I’m hopeful to be with them. My mind has also been on a former co-worker who dropped me an email over the weekend.  He just returned to full-time work after his own bout with a blood cancer, so it started my day off with great hope. Yup, my mind has been all over the map today, so what I’d like to do instead of comment on one of the topics that is on my list, I’d really like to hear from you…specifically:

-          I enjoy posting a music video that has a theme to what I’m going through, but the thing is this – music really affects me in a number of ways, the most poignant of which encourages me to look beyond the here and now. I have a few left in the hopper, but what I’m hoping you can do is send me a list of songs that lift you out of your own malaise.  I’m listing out the songs I’ve posted to-date.  Give me a holler if one resonates with you. I’d be interested in finding out the what and the why.

 

-          Perhaps you have questions that you might not otherwise ask. To put this in context, I went to a Team in Training Kick-off on Saturday. I’ve been chosen as one of five honorees – essentially the local face of leukemia so that the people training for half or full marathons can put a face to the disease they’re raising money for.  One of the other honorees is a little guy of about 4 or 5 years old, if that much. You can see him in the picture next to me.  He has had a rough bout with ALL, but he’s doing well.  His dad spoke to the group about their experience, but one thing that he did that stood out to me is that he wouldn’t use the word, “cancer” in his presentation.  In fact, the PowerPoint presentation had the word like this c$#*@ as if it’s a cuss word.  If you’ve read my postings, you know I won’t hide nor will I try to elicit sympathy, but rather face this monster head-on. With that in mind, ask me whatever.  If it’s something I can share publicly, I’ll write about it, respecting your privacy of course.

 

Leukemia & Lymphoma Society (LLS) Team in Training
Utah branch. These folks are running half or full marathons
to raise money for LLS to cure blood cancers. The little guy
in the middle with the purple jersey is an ALL survivor;
along with another woman hiding in the back in one of the

red shirts, we are five honorees for whom the team is running.
We're like poster children (you know I'm a big kid).

-          I’m still looking for entries in to my “Perfect Moment” contest. My investment has been in people my adult life and I’m reasonably sure that’s why I’ve had such amazing support from people out in cyber-land – because the majority of people who read this know me well enough that, had we been in the same geographical location, I’d see them on my doorstep. And actually, I have. They’re the same people I’d be visiting as well if the tables were turned. So, please, tell me about your perfect moments (see this posting for the details).

So, really, I’d like to hear about you today.  Take a few minutes and drop me a line either via email or if you like, a Facebook message (please don’t post it to my wall) as I’m as interested in you as you are in me. It’s how this works. When this is all over and I’m no longer a cancer patient wrapped up in medical detail, relationships continue to grow; and the best ones only use electronic media – they don’t stay there.

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

OK, since we're talking about a couple of athletic events to raise money for charitable organizations, both of which I'm personally invested in - one as a participant and the other as, well...a participant (different kind of course).  Today's music: Win by Brian McKnight from the movie, Men of Honor.

 

Dark is the night
I can weather the storm
Never say die
I've been down this road before

I'll never quit
I'll never lay down
See, I've promised myself
That I'd never let me down, so

I'll never give up, never give in
Never let a ray of doubt slip in
And if I fall, I'll never fail
I'll just get up and try again

Never lose hope, never lose faith
There's much too much at stake
Upon myself I must depend
I'm not looking for place to show,
I'm gonna win

No stopping now
There's still a ways to go
Ohh, someway, somehow
Whatever it takes I know

I'll never quit, no, no
I'll never go down
I'll make sure they remember my name
A hundred years from now

I'll never give up, never give in
Never let a ray of doubt slip in
And if I fall, I'll never fail
I'll just get up and try again

Never lose hope, never lose faith
There's much too much at stake
Upon myself I must depend
I'm not looking for place or show,
I'm gonna win

When it's all said and done
My once in a lifetime, won't be back again
Now is the time, to take a stand
Here is my chance, that's why I

Never give up, never give in
Never let a ray of doubt slip in
And if I fall, I'll never fail
I'll just get up and try again

Never lose hope, never lose faith
There's much too much at stake
Upon myself I must depend
I'm not looking for place to show,
I'm gonna win

Strong

It’s not a big surprise that cancer saps your strength. Being short of breath is one of the symptoms of leukemia in particular since the effect of the disease is to produce fewer mature red blood cells, the carriers of oxygen to the body. For me, that really wasn’t a symptom until I began treatment when anemia became pretty severe and it was all I could do to go up a flight of stairs. That’s not a wonderful revelation when you’re used to taking the stairs out of principle. I made it to the top and felt as winded as if I’d been running the length of a city block. But aerobic fitness isn’t the only place where I’ve found that my strength had ebbed.

I wrote last week about a comical fall I had at the car dealership where I had dropped off my vehicle for a factory recall repair.  The strength I took for granted to keep me balanced just wasn’t enough and I took a bit of a spill on to my gym bag that held my sweats. And then adding insult to injury, I didn’t have the strength to stand up with the two bags I had been carrying, so I had to put them down and stand up and pick each of them up one at a time. Yesterday, I went to physical therapy to see what I could do to maintain some muscle tone during my illness. Other than walking around a few city blocks or in the tunnels of the VA complex, it was the first time I had really gotten some good physical activity, let alone visited a gym since that fateful night - the night I received my diagnosis - I was kept from going to the gym in lieu of inpatient testing. It was also the first time I could quantify just how much strength I’d lost in the past couple of months.

Based on what I used to lift, it’s fair to say that about 50-60% of my strength has gone.

I honestly didn’t know where I would fall out on the spectrum, but it was hard to try to lift a weight and then finding I didn’t yet have the strength for that, pull out the pin from the weight stack and move it up a plate or two until there was an amount I could actually lift and then find the right amount I could do three sets with the physical therapist. My legs were the biggest surprise.  While I could ride the bike at a comfortable pace for quite some time, I’m sure I wouldn’t have been able to dial in much resistance to simulate a hill.  The once tree-trunk thighs and carved calves are a bit thin and rather than 300 pounds, I was pushing 130. My biceps where a PICC line had pierced were the biggest drop – a mere 20 pounds pushed my limit. Sure, it’s to be expected, but the male ego is a powerful force, even for a 50 year-old! I think the encouraging part of this is that I can get some supervised physical activity to perhaps stop the atrophy and perhaps even reverse it before going to Seattle for the transplant. The doc did say to stay as physically active as possible and I’m just glad I have a way to do that now.

After my exercise in humility, I did my regular blood draw. Today, I got to see them pull a sum total of, count ‘em, eight tubes of blood. Two of them were my regular three-times-weekly draw to monitor my blood count and chemistry. The other six were being sent to Seattle to begin the HLA-typing for my transplant. The nurse I spoke to today estimated another two months before I would be showing up there, even with a rush (which there apparently is). I think it’s fair to say, I’ll be spending most of the summer here in Utah and the fall in Washington state. Of course, things could happen sooner and I’m hoping they do since there are a lot of people who are on stand-by for “the call.” Truly, the hurry-up-and-wait is in full force with the VA. I have to believe someone on the other end of this process is also being pushed along and waiting for me.

Of course, strength isn’t limited to the body.  The spirit strong / body week analogy works here.  I have had physically imposing men that I respect tell me that I’m strong or that they couldn’t do what I’m doing. On the one hand, it’s not like I volunteered to do this; on the other, the struggle I fight truly is in my mind, so not only am I being weakened physically, I duke it out in ways that just can’t be seen with the eyes. I think that’s why people who survive a crisis of some sort tend to be different or transformed on the other end of their ordeal.  Their minds got a major long-term work out and you just know it when you meet one of these people.  They have a presence about them that belies the personal hell they walked through. You know someone has been educated the same way. This is just the post-graduate level of the school of hard knocks.  Cancer is definitely the PhD level and I think it’s fair to say you’re reading my dissertation.

So, my mental biceps may be looking good even if my physical ones have scars from PICC insertion sites; and my emotional legs may be paradoxically the strongest part of me (though I cry more these days more than I care to admit) while my physical legs look a bit scrawny. That’s because I’m walking through some tough stuff where you might not see it. Despite my outward appearance and personal expectations, I am, yes, strong.

Music for the day is another oldie from when I was a kid:  Simon & Garfunkel’s Bridge Over Troubled Waters

When you're weary, feeling small
When tears are in your eyes
I will dry them all
I'm on your side
Oh when times get rough
And friends just can't be found

Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

When you're down and out
When you're on the street
When evening falls so hard
I will comfort you, I'll take your part
Oh, when darkness comes
And pain is all around

Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

Sail on silver girl, sail on by
Your time has come to shine
All your dreams are on their way
See how they shine
Oh, if you need a friend
I'm sailing right behind

Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind