Not Alone

I’ve known Jeff and Jane since we were back in the big hair days of high school together. Jeff was a swimmer and I gave competitive swimming a shot during my junior year. There were things I liked about it, but in the end, I didn’t have that level of athleticism. But because the solitary nature of competitive swimming pushes self-discipline to the front of one’s character, it carried me through collegiate level athletics where I was the manager for the Naval Academy’s swimming and water polo teams, experiences that cost me academically, but enriched me in other ways.  I may not have graduated with the best of grades, but the fact that I’m in great physical condition says it was time well spent and a discipline well worth fostering. It may very well have saved my life. Jeff was a classic swimmer guy – obviously very athletic, very quiet and to himself, and as I remember, pretty smart, too. Had I stuck with the team, I think we’d have been pretty decent friends and I’d have had a far less rebellious senior year!

Fast forward a few years to the first high school reunion I attended. It was a typical reunion where we’re sizing each other up and Jeff has a beautiful young lady on his arm – his high school sweetheart - who had somehow managed to maintain that twinkle in her eye and a genuine smile. Her cheerleader pedigree offset his brooding swimmer introversion, one that I still have, even if I don’t get to swim all that often anymore. I enjoy being around people, but I recharge my batteries in solitude. I’ve gravitated to physical activity that I can do alone or with others – hiking, cycling, and skiing, for example. Yeah, I’m a classic introvert, but you’d never know it by how I can walk into a room and talk up a storm with everyone. Just ask the nurses!

Fast forward another decade and I find myself looking at pictures of a strong young man who is following in his father’s footsteps, except that he has some added weight he's tugging through the water - he has cancer. I was amazed at how people came from out of the woodwork to actually give support and make donations. It’s the sort of thing that restores your faith in humanity amid the crazy polarization that politicians and talking heads keep trying to drive us toward. When I moved home to Utah about a year later, I was shocked to find out their son Stephen lost his battle. It would be only a few weeks later when I received my own diagnosis of another kind of blood cancer – leukemia – and receiving Jeff and Jane in my own hospital room.

The button kinda says it all. The night it was given to me,
I didn't fully appreciate just how true it was!

Jane, somehow managing to keep me smiling throughout the visit, put a button on the table next to my hospital bed. It read “No One Fights Alone.” Jeff and Jane were the tip of the iceberg. The outpouring of support I, myself received, overwhelmed me.  It stretched literally around the world and it took nothing for me to tear up with a kind of gratitude that I just couldn’t grasp. I think it embodies that thing we attempt to call unconditional love. People have just been there…because. And thankfully, many, many still are. How cool is that!

That night was almost four months ago.  It’s inconceivable that I’m still dealing with this, these months later, yet cancer is not something where you can take a course of antibiotics and get a check-up in a couple of weeks.  It takes several weeks to smack it down into remission and then there is the actual treatment to get it out permanently. It takes time, it takes patience, and it takes a whole lotta pharmacological fun! You ain't seen nausea and icki-ness until you've tried this stuff!

I’ve been really amazed and gratified in that I’m finding that I’m not alone in other places either.  It seems that everywhere I go anymore, there’s someone who is a cancer survivor or connected first-hand to one. In the middle of nowhere in particular, I’ll get instant best wishes and offers of support and people whom I met remember me. Walking through the Utah Arts Festival last weekend, it wasn’t the tell-tale cue ball head, but a mesh sheath around someone’s left arm that was the flag. I’d recognize a PICC line anywhere! In no time, we were comparing scars, the quality of the mesh sleeve material, and the kinds of lumens on the catheter. All I can say is that the VA has hooked me up! I have a really nice mesh sleeve that protects my PICC line, but she clearly won the scar competition, so it was a draw. I think she was still jealous!  We had a good laugh and it was nice to bring a smile to another cancer compadre!

Seriously...look at the fuzzy hair and the
salt-and-pepper goatee! Problem is
I sound more like Nicholas Cage. Not
quite the crooner am I?!

Of course, there are those ubiquitous bald heads we all know so well from the movies! You can tell which of us are bald thanks to the toxic chemical goodness and those of us who have a maternal grandfather who had similar follicular challenges and have chosen to rock the look. It’s like seeing the car you just bought everywhere you drive, when before, you may have noticed one or two. There are a lot of guys out there who are able to make themselves downright studly sans-cheveux.  *I* dear friends, am not one of those guys.  I’ve been told that I have an academic look about me with my school boy spectacles, so it’s not necessarily bad, but it’ll never come across as Vin Diesel. Actually, I got called an “Eastern egghead” in a thick French accent at a swanky café on La Place Clichy in Paris, so there must be some smarty-pants vibe I give off. Truth be told, it wasn’t such a swanky place and after taking a good look at myself in the mirror at the hospital as I was shaving the other day, I wasn't so academic looking, but I do think my doppelganger is Billy Joel - moi, sans talent! In the meantime, I’ve accumulated some different hats in addition to the ball caps I already had prior to my induction to the cancer hall of fame.

All kidding aside – well, most, but not all of it – the single lesson I’ve learned is that you don’t have to know everything and you don’t have to even know the questions. That’s because when the chips are down, you’ll be amazed at who comes forward to stand with you, to be on your side, to be the one to pick you up, and pat the dust off of your hospital jammies. You are not alone, but you have to be willing to accept the help offered to you. It restores your faith in humankind and it births within you a sense of gratitude that just can’t be fully grasped until you’ve eaten a little dust.

No, you’re not alone…and that button Jeff and Jane gave me that says, “No One Fights Alone” is in plain sight to remind me of that fact. It’ll stay there until I can pass it on to someone else who needs that reminder. Hopefully, he or she will get that reminder in the flesh from many of those like me who have walked a mile in their shoes already.

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

Music for the day: Not Alone from Red.

Slowly fading away, you're lost and so afraid
Where is the hope in a world so cold?
Looking for a distant light, someone who can save a life
You're living in fear that no one will hear your cry
Can you save me now?

I am with you, I will carry you through it all
I won't leave you, I will catch you
When you feel like letting go
'Cause you're not, you're not alone

Your heart is full of broken dreams, just a fading memory
And everything's gone but the pain carries on
Lost in the rain again, when will it ever end?
The arms of relief seem so out of reach
But I, but I am here

I am with you, I will carry you through it all
I won't leave you, I will catch you
When you feel like letting go
'Cause you're not, you're not alone

And I will be your hope when you feel like it's over
And I will pick you up when your whole world shatters
And when you're finally in my arms
Look up and see, love has a face

I am with you, I will carry you through it all
I won't leave you, I will catch you
When you feel like letting go
'Cause you're not, you're not alone

And I will be your hope, you're not alone
And I will pick you up
And I will be your hope
And I will be your hope

Slowly fading away, you're lost and so afraid
Where is the hope in a world so cold?

From a Q-Ball to a Q-Tip

A figurative before and after shot.

During my first round of chemotherapy, my hem/onc doctor put her hand gently on my arm and said with as much compassion as I’m sure she could muster, “You know, you’re going to lose your hair.” I told her with a bit of an attitude, because that’s how I cope with crisis, “I know, I’ve seen the movie.” Even though I knew it was going to happen, waking up and seeing my hair unceremoniously spread out on my pillow and then later in the morning collected in the shower drain was a bit traumatic.  You can be only so prepared for that kind of thing. Chemo drugs target quickly dividing cells, which is why they work well for cancer treatment.  Cancer cells typically divide quickly and take over the body.  Unfortunately for our vanity’s sake, hair cells also quickly divide and one of the side effects of chemotherapy is that even healthy cells fall victim to the toxic chemical goodness – hair loss is collateral damage.

Yesterday was one of those days when the other cells really took it in the shorts and it I was not so very happy about it.  I have in my left arm, something called a PICC line.  It’s a central catheter that allows the chemo to be infused directly into my blood stream just above my heart - a place where the chemical is taken in at a higher blood flow than in a vein in my lower arm.  It also allows blood to be withdrawn directly as well, which makes it essentially painless for daily lab blood count and chemistry draws. I’m seeing that as my treatment has progressed, my veins have become smaller and more difficult to access with a typical IV needle. I spiked a low-grade fever which meant that I would need blood cultures, which essentially checks for infection.  Under normal circumstances, that would be no big deal, but not all of the blood cannot be taken from my PICC line, meaning I get the needle in the arm.  OK, again, not a big deal, but my veins aren’t cooperating, which meant after two tries, it took someone with an ultrasound machine to find a vein and then anesthetize my arm enough to stick a very long needle and pull out enough blood for a culture.

At least they came back negative.  It was a pretty painful procedure, even with the local numbing agent.

Along with hair and veins, fingernails show signs of chemo as well.  I didn’t know this until someone pointed it out to me and as I looked at my nail beds, I could see a couple of lines that reminded me of tree rings.  I could see a couple of indentations that were likely the periods where I was infused in earlier rounds.  I think it’s time for a mani-pedi! I’ll bet there’s an aesthetician in a strip mall nearby who is up for a challenge.

But our bodies are amazing and despite all the horrific things that happen because of cancer, I’m recovering (even if only temporarily before my transplant). At some point during my last consolidation round, I looked in the mirror and noticed my whiskers had started to come back.  I saw as well that my arms and chest were being reforested as well, so I decided it might be time to let my head hair grow back in.  When it started falling out, it was February and it was cold, so I wore stocking caps a lot to keep my head warm.  It was amazing how cold I would get even with an otherwise warm temperature and how much a difference head hair made! I had initially cut it down pretty short, but our head hair tends to be a bit bristly and when I put my stocking caps on, it felt like I was pushing my hair back into my head and it was pretty uncomfortable, so I did what I swore I would never do: I shaved my head down to the skin. I wasn't exactly rockin' the do, but it was now comfortable.  I did get some complimentary feedback about looking rather academic and it even harkened back to an awkward conversation I had in the Place Clichy in Paris some years back about being an 'egghead' with a curious young French guy who overhead me talking with a shipmate.  Still, I’d have been happy looking normal with hair!  As my hair is growing back in, it’s starting out very much like baby hair – very fine and it feels more like fur than to what I'm accustomed.

I’ve been told that head hair often comes back after chemo in different colors and textures than before.  My hair just prior to all this was dark blond / light brown and pretty straight.  It looks a bit darker than before and honestly, it’s hard to know if it will be any different this early on, but other cancer survivors have told me that their hair came in wavy and grey at first and then often (but not always) went back to what it was like prior to the chemo.  I could do without the grey, but wavy would be fun, I think.  I’ve never been one to do a perm, but to have it this way would be interesting.  So, I went from having a cue ball head to having a Q-tip head. Great cocktail party story, huh?

I’m actually feeling pretty good, all told, even though I’m getting another dose of chemo as I write this.  I honestly can’t imagine what it’s going to feel like when I am no longer anemic since I’ve been operating this way for quite some time now.  What will it be like to have a good amount of energy again? Yeah, yeah, curb my enthusiasm, you say?  Nah, I’m stoked to be moving back into a more typical way of life as soon as possible and going out to climb mountains, cycle hundreds of miles, and just raise a little hell now and then!  Even this here grandfather of two still has a number of good hands left to play. One bum hand called cancer isn’t going to put me out of the game.  In fact, it showed me how to play the game of life even better.

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

Today’s music: Seal’s Prayer for the Dying

Fearless people
Careless needle.
Harsh words spoken,
And lives are broken.
Forceful aging,
Help me I'm fading.
Heaven's waiting,
It's time to move on.

Crossing that bridge,
With lessons I've learned.
Playing with fire,
And not getting burned.
I may not know what you're going through.
But time is the space,
Between me and you.
Life carries on... it goes on.

Just say die,
And that would be pessimistic.
In your mind,
We can walk across water.
Please don't cry,
It's just a prayer for the dying.
I just don't know what's got into me.

Been crossin' that bridge,
With lessons I've learned.
Playing with fire,
And not getting burned.
I may not know what you're going through,
But time is the space,
Between me and you.

There is a light through that window
Hold on say yes, while people say no
Life carries on
Ohh! It goes on

I'm crossing that bridge,
With lessons I've learned.
I'm playing with fire,
And not getting burned.
I may not know what you're going through.
But time is the space,
Between me and you.

There is a light through that window.
Hold on say yes, while people say no
Cause life carries on
It goes on, It goes on.
Life carries on.
When nothing else matters.
When nothing else matters.
I just don't know what's got into me.
It's just a prayer for the dying.
For the dying.

Ignore the Numbers – Fight Like Hell

We all make a lot of decisions based on the numbers and for most things, we have to weigh what the numbers are telling us in order to make informed decisions. Most of those numbers are routine things – how much we can afford, how fast we’re driving, how much time it will take, etc. These things tend to be routine and the consequences for screwing it up aren’t typically a big deal. Then there are other decisions that involve a bit of fuzzy logic. They involve feelings, a lot of unknowns, and probabilities. Those consequences?  Well, they have more oomph to them and screwing them up can cost money, relationships, or in extreme circumstances, your life!

Yeah...this is what it feels like when you get the
heavy diagnosis...and that little gerbil's tachometer
is definitely in the red zone and then...he stops and
spins until the wheel stops.

When a doctor hands down a heavy diagnosis, there are far more questions than answers; there are far more decisions than possibilities; and there are far more feelings than facts. The prognosis for illnesses gets progressively more complicated with the ailment of course; and as the word survival enters the picture, we want numbers. The kicker is that the numbers we really want are the ones that are always the difficult ones to estimate.  After all, everyone is different.  Everyone reacts differently to treatment and comes into that treatment in different condition and with different histories, sensitivities, and attitudes.  There are just a lot of variables that come into play and not even the best doctors can hone the number accurately. It comes down to their past experience, the results of studies that have similar demographics and the art of guessing. It’s not always reassuring, but it’s reality.

When I got my diagnosis and I found out the particular type of leukemia and then the specific stage it was classified, I started researching what my chances of survival were, based on published studies that were broken down by age and race from both the American Cancer Society and the Leukemia Lymphoma Society. They were stark and honestly not very optimistic, but my hematologist was able to factor in a couple of other things that the studies were not: I was in pretty good physical condition when I arrived and my attitude was positive. When I asked for the numbers, they were far better than those published in the ACS and LLS studies. On the other hand, the docs were quick to point out that the transplant docs were in a better position to make that all-important educated guess and a lot was resting on how I responded to the transplant, which is yet to come. Even though I was introduced to some new terms like GVH (graft versus host) disease and TRM (treatment related mortality), I remain optimistic.

It has been almost four months since my diagnosis and as I’m sitting up in a hospital bed with a nurse connecting me with another dose of chemo fun, I’m feeling fine. These consolidation rounds are nothing like my first three weeks as an inpatient during my induction where I have never felt so sick in my life.  I know the chemo is working internally and my body responds like clockwork so far.

The big unknown for me is the transplant.  There’s the waiting, how I’ll respond, how long it will take to recover and so on. Suffice it to say, the unknowns play a huge part in how we respond to the tough words a doctor may give, but I’ve come to realize that despite how we base our routine lives on numbers, this is an instance where numbers be damned, we have to fight like hell for ourselves.

I just finished reading Lance Armstrong’s story of his early years – It’s Not About the Bike – which specifically discussed his battle with cancer as a world class cyclist and then beating the odds and returning to world class status and ultimately winning the Tour de France for the first time. Regardless of what you might think of the man today, the story is compelling and courageous, especially considering the fact that his testicular cancer had spread to his lungs and his brain. He fought a difficult uphill battle with his cancer, but he won.  It wasn’t until the end of the book after winning his first Tour de France where his doctor revealed that his chances of survival were a mere 3%! Perhaps had he known this, he may have given up; or maybe it would have given him even more reason to battle on. That’s another facet of the prognosis the doctor cannot know – our resolve to fight or resign to mortality.

I’ve unwittingly overheard one of those tough conversations about a man’s cancer taking the turn toward terminal and his gracious coming to terms with his inevitable demise; I’ve also made friends with someone who laughs at his own cancer in the face; and I’ve known someone who received an identical diagnosis as his own brother, one of which made his remaining months those of peace and enjoyment and the other going out fighting. And every one of those situations ignored the numbers and fought like hell for themselves.  You see, fighting doesn’t necessarily mean that you seek out the best doctors, the clinical trials when conventional treatment doesn’t work, but it can! 

It all comes out to determining what the best course of action is. It may, in fact, mean doing a lot of footwork to find the right second, third, or fourth opinion to get the right doctor that has the expertise you need…or it may mean fighting with loved ones to let you enjoy your remaining time on this mortal plane with dignity and comfort.  It may mean winning the fight within your mind to find the peace with whatever decision you arrive. Numbers may mean nothing or everything, but ultimately making the decision you can live or die with is the one that gives settles you. And that’s why, my friends, I say, “Ignore the numbers and fight like hell” … for you.

Music for today – Tim McGraw’s Live Like You were Dyin’

He said, “I was in my early forties
With a lot of life before me
When a moment came that stopped me on a dime

“I spent most of the next days, looking at the x-rays
Talking ‘bout the options and talking ‘bout sweet times”

I asked him when it sank in
That this might really be the real end
How's it hit 'cha when you get that kind of news?
“Man, what'd ya do?”
He said,

“I went skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin’ ”
And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

He said, “I was finally the husband
That most the time I wasn't
And I became a friend, a friend would like to have”

”And all of a sudden goin’ fishin’

Wasn't such an imposition
And I went three times that year I lost my dad
Well I, I finally read the good book
And I took a good long hard look
At what I'd do if I could do it all again
And then

“I went skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin’ ”
And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

Like tomorrow was a gift
And ya got eternity to think about what to do with it
What did you do with it?
What did I do with it?
What would I do with it?

Skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I watched an eagle as it was flyin’
And he said, “Someday I hope you get the chance
To live like you were dyin’ ”
To live like you were dyin’
To live like you were dyin’
To live like you were dyin’
To live like you were dyin’

Destination Medication Staycation

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

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

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

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

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

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

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

 



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

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

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

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

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

 

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

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

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

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

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

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

The Fellowship of Suffering

My last month on active duty in the US Navy was a very quiet uneventful one…except the night I decided to find something different to do and on one cold January evening the very day before I was due to be discharged, I decided to go ice skating. The rink was practically empty and I enjoyed myself. I’m not an accomplished skater – I’m merely passable, capable of holding my own without looking too much like the one waving his arms about to maintain some sort of balance. Well, that wonderful evening, I was standing near the entrance to the rink when the skates went out from underneath me and I was flat on my back. I would find out that the fall had actually broken my leg, albeit a rather minor break. Because the fracture was on the outside, I was somehow able to walk on the leg, leading me to believe it was just a sprained ankle. You can imagine the chagrined look on the corpsmen’s faces when they realized they had me walking on a broken leg. Suffice it to say, they got me off my feet in no time and wanted to put me in a cast. Driving a manual transmission car with my toes was a challenge, but I was determined!

I got over the novelty of the cast pretty quickly and was none too disappointed when the day came to get it removed. I remember sitting in a waiting room with a collection of other walking wounded people awaiting their own removal of multi-colored casts. The waiting room was quiet enough to hear a pin drop. The silence was broken by a good ol’ boy from Tennessee whom we would all find out had in his young life, sported casts on many places on his rather large frame.

“Boy, but don’ it itch!”

We all let out variations of bemused sighs, all nodding in agreement. Everyone began sharing how long they had worn their cast and how they managed to get injured. The place practically turned into a religious service, everyone bearing testimony on their suffering. Can I get an ‘amen,’ brother? When I lived in Minnesota, there was a common suffering of the intensely cold winters. If it got above 0° any time in the month of January, it was cause for celebration and when it crested 15°, I, no kidding, saw shorts. When you live in Minnesota, you revel in complaining about the weather. It’s just what you do.  Once I put the frigid temperatures behind me in living in Southern California, I did more than store my lovely Norwegian sweaters with cedar blocks in plastic boxes under my bed never to be worn in the eternally warm weather. Arriving in November, I was greeted by shivering Californians wearing fur-lined parkas in the ‘new’ frigid: 50°(yes, really)! In SoCal, the new fellowship of suffering was the hellish traffic. Just as in Minnesota, we all acknowledged the extreme weather, in SoCal, we all acknowledged the traffic and once again, we reveled in how bad it was. It required no explanation, perhaps just how much time we spent in it. Now that I’ve arrived in Utah, it doesn’t get really all that cold and the traffic can’t compare to Southern California, I laugh out loud at anyone who complains at either!

My new fellowship of suffering seems to come rather often now with other people who are suffering from chronic illnesses and most especially with other cancer survivors. I spend quite a lot of time at the VA Hospital getting routine blood draws and because I’m there so much, staffs in many places throughout the hospital know me by name. I still have my PICC line in, so I don’t get stuck with a needle for my lab tests this round – I know I heard an “amen” from the back of the room – so I go to the Ambulatory Medicine Unit (AMU). The AMU has a number of rooms with a few recliners and IV poles. People who get outpatient chemotherapy, blood products, or infusions for other chronic conditions can pull up to the pump, get serviced (oil changed, windshield squeegeed, and a fragrance of their choice all complimentary of course) and be on their way. For those of us with PICC lines or ports, it happens a bit faster.  It’s as easy as unscrewing a cap and connecting the IV. No muss, no fuss, no pain – we all win…and we get an extra punch on our frequent customer card along with a cup of coffee and a packet of graham crackers. What a deal!

This morning, the nurse took all of about 2 minutes to come in and take a blood sample from my PICC line and the rest of our time, we spent just chatting. She flushed out my PICC line and it struck me that it was not fair that I gave blood and she just gave me water…isn’t blood thicker than water? Yes it is, but that’s the arrangement. So, she took my test tube sample off with a smile (and left no graham crackers) for the lab to run their chemistry and count and while I was waiting for the results, I got two roommates. And just like the good ol’ boy from Tennessee, one of us started talking and we all just laughed through our own shared suffering of sorts. We were all veterans and had long-term conditions – one had Parkinson’s and the other had rheumatoid arthritis. My numbers came back really good and I left with new friends and a bit of a spring in my step.

The nurse "flushing" my PICC line with a saline solution.
I do this at home every morning, but she's getting ready to
draw blood and then change the dressing around where
the actual catheter enters my the vein in my arm. You can see
the greenish donut where the purple line disappears. This
line goes into the vein and it feeds through my chest to just
above my heart. Pretty cool, huh? Well, it keeps me from
getting needles in me on a regular basis!

I’ve found that as much as I don’t ever want cancer or illness to be the first thing about me, there are times I need to be able to talk to people who know what I’m going through. It’s far easier to talk with two complete strangers about what I’m working through than my loved ones. I think that’s mostly due to the fact that I just don’t want the relationship to change. I don’t want them to treat me differently. I want and need that stability that regardless of the awful things that I’m walking through, for the important people to be there, to be unchanged is critical.  My life, my world may be shaking underneath, but the ones who are my foundation stand in front of me, holding me steady as my feet wobble from the quake. I can’t make them understand what it is that makes me unsteady the same way they can relate to heavy traffic or nasty weather…and I guess the truth is, I wouldn’t want anyone with whom I’m depending on to have to empathize fully because I wouldn’t want anyone else to go through what I am.

That said, I really do want to be able to be there for others who find themselves in the dark with a new cancer diagnosis and unaware of what to do next. I’m not a medical expert and I don’t want to be a source in that department, but I know those who have meant the most to me have given me the simplest of human needs – a simple touch by holding my hand when I hurt, hugged me when I felt unattractive as my hair thinned and fell out, smiled at and with me or told me jokes when I just wanted to cry, brought me a cup of real coffee when the chemo made breakfast smell putrid…and so on. Every little message of love and support pushed me one day closer to healing and whatever I can do along the way and after the only thing left from my cancer experience is PICC line scars, then that’s what I do.

That’s what the fellowship of suffering grants – authentic empathy and a responsibility to ease other’s pain. It’s not a group I had endeavored to join, but as I’m wearing the accoutrement of its membership and with so much pain around me, it feels right to smile and laugh with those who hurt.  Funny thing happens in that process – I make new friends…and I find myself feeling better.

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

Today’s music – a classic from Bill Withers in 1973: Lean on Me

Sometimes in our lives
We all have pain
We all have sorrow
But if we are wise
We know that there's
Always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things
You need to borrow
For no one can fill
Those of your needs
That you won't let show

You just call on me brother
When you need a hand
We all need somebody to lean on
I just might have a problem
That you'll understand
We all need somebody to lean on

 

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

You just call on me brother
When you need a hand
We all need somebody to lean on
I just might have a problem
That you'll understand
We all need somebody to lean on

If there is a load
You have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

Call me
If you need a friend
(Call me)

Fear Not

You’d have to be totally numbed to life to not have some fear about a cancer diagnosis.  Sure, every fiber of my machismo bristled at the thought that I was somehow infested with this thing that would try to take me out of the game on a permanent basis, but the real me – you know, the one who has feelings and kids and people who love me – that one was pretty damned scared. My military training was in full force in that I put on that brave face and tried to have it out with the doctor. Of course, if you’ve read anything that I wrote about that conversation, you know he pulled the trump card and won. That conversation went something like this:

   Me      I feel fine.  I don’t have any of the symptoms you listed.
   Doc     The pathologist was adamant that you have leukemia. You have 50% monoblast cells in your bone marrow. I want to admit you tonight.  This constitutes a medical emergency.
   Me      Let me get this straight. I feel fine.  I’m on my way to the gym and you want to bring me in here and give me chemicals to make me really sick?
   Doc     (trump card) You could leave tonight and I can pretty much guarantee you that within 30 days, you will be in the Emergency Room very ill and in another 60 days, you’d likely be dead. The choice is yours.

Insert discussion between mom and doctor here. 

   Me      Can I at least take my car home and put it in the garage?
   Doc     (not amused … and not wanting to let me leave to get an overnight bag. Kill joy!)

It was at this point, of course, my mind began to spin and I think there were some obituaries being mentally written at that point. But dammit, this was a VA hospital and I felt like cussin’ like a sailor, although admittedly, I really don’t have much of a potty mouth. This was one of those occasions my mom let the “F” bomb drop once we were on our way out to the car. I think I was in too much shock to let anything out.

A lot has transpired since that day. I’m past the 90-day mark that the doc told me would be my life expectancy if I didn’t get the chemo rolling and now still in the queue for a bone marrow donor. The transplant is a daunting procedure that will knock me for a loop, but I’ve spoken with a number of people who have been through it and are thriving now. The Leukemia-Lymphoma Society set me up to talk with a couple of guys who are survivors, one an eight-year survivor and the other a six-year survivor and I know personally two people who are about a year past their transplant dates. The common thread is that they’re alive and doing well. And that’s where my sights are set.

I harbor no illusions about sailing through it like I have the consolidation chemo treatments, but I’m hopeful it’s not as bad as I have shaped the process in my mind. I think we all tend to do that.  We build up this bogey man in our mind of what something is going to be and we live in that illusion of fear. Sometimes it’s downright debilitating. For me, I can’t tell you how many times I’ve built up the monster of an experience and while the actual event is not really pleasant, it wasn’t what I had imagined. I get through it and wonder why I had turned it into such a big deal. I can be my own worst enemy as I suspect we all can from time to time.

I think that’s why it’s so important to talk things out with others who have actually been through what’s in front of us. They not only help us navigate the mine field of our imagination, they can provide the real comfort we need. Cancer isn’t something any of us should fear. There are things we all can do to live a healthier lifestyle, but I’m living proof that even a healthy lifestyle of daily exercise and a decent diet isn’t going to deter this and I can’t say that genetics played a factor in my case. Everyone in my family lives to be pretty ancient and self-sufficient. Cancer just happens. When I’m on the other side of this, I’ll continue my daily exercise and balanced diet.  The “new normal” will certainly entail a bit more vigilance than before, but I’m going to be OK.

And today, I’m not afraid of tomorrow.  Yup, I’m a bit intimidated about the bone marrow transplant procedure as I do have this allergy to pain, but don’t we all? Actually, I have a relatively high threshold of pain, but I don’t like pushing it any more than the next guy. Truth be told, I’m really getting pretty tired of the needles. Maybe I shouldn’t have watched the Frontline presentation: Facing Death. That’s a laugh a minute, especially since two of the people they featured were dealing with failed bone marrow transplants. Actually, I watched it because of how I see death now. I’m not expecting to die, but I do have to face that eventuality and its possibility, no matter how unlikely, in my treatment. If I can face that ultimate fear, then everything else is pretty much gravy, right? (Nod your head here in agreement).

There are a lot of things in life that elicit fear – and I’m not talking about spiders, snakes, and small spaces. Watch TV for even 30 minutes and pay attention to the language: everyone’s trying to scare us into doing something. Advertisers want us to buy their product or else… and then there’s the danger lurking in our very own kitchen cabinets, details at 6:00… or the other political party is downright unpatriotic and dismantling our freedoms… or it’s just not safe to go to the (you fill in the blank). And the list goes on and on. We give these people even a moment of our attention and we feel threatened and moved to action as our fight-or-flight instinct kicks in.  Our blood pressure rises and we ask our doctor if this medication is right for us and we lock our doors, turn on our security system and become a high-strung hermit that has been scared right out of life, liberty, and the pursuit of happiness by the same system that was created by those noble ideals.

So…stop it!

Stop living in fear. Some of us will have bad things happen to us for no reason that makes sense. Some of us will have our houses burn down because of something that no one could have foreseen; some of us will lose loved ones to circumstances we couldn’t have imagined…and yes, some of us will get cancer. But we can’t live like we’re going to lose it all, but rather, may I suggest making the most of the life you have with those that mean the most to you…and that includes *you* today. And take care of yourself now and say the things you have in your heart to that special someone before you talk yourself out of it. Live your life with gusto and intention and make your decisions devoid of fear. Absolutely, weigh your options and consider the consequences, but don’t *not* do something out of fear.

Music for today - These Times by Safetysuit

 

These times will try hard to define me
And I'll try to hold my head up high
But I've seen despair here from the inside
And it's got a one track mind

And I have this feeling in my gut now
And I don't know what it is I'll find
Does anybody ever feel like,
You're always one step behind?

Now I'm sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will

And I know there's someone out there somewhere
Who has it much worse than I do
But I have a dream inside, a perfect life
I'd give anything just to work
It's like I'm only tryin’ to dig my way out
Of all these thing I can't
And I am
Sitting alone here in my bed

I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass,
They will pass
They will pass
These times are hard
But they will

These times will try hard to define me
But I will hold my head up high
Sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass

And I know there's a reason
I just keep hoping it won’t be long ‘til I see it
And maybe if we throw up our hands and believe it!
I'm telling you these times are hard
But they will pass
They will pass
They will pass
These times are hard
But they will pass

Undaunted Courage

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

 

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

 

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

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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