Embrace the Suck

Just when you think you have broken the code, they change the rules! After five inpatient stays at the VA Hospital in Salt Lake City, I thought I had things figured out. There are certainly parts of being hospitalized that don’t change, but the level of things for the bone marrow transplant here at the Seattle VA are ratcheted up a few notches with respect to keeping things über-sterile.  I’m now well into the process of killing my immune system off to make way for the new one, courtesy of “Hans,” my mystery donor. This is Spring Cleaning taken to a whole new level!

And to take Spring Fever to a whole new level, I settled into the new digs in the room at the end of the hall of the Bone Marrow Transplant Unit (MTU).  It has a lovely view and I don’t even have to walk to the window to see where I’d really rather be. My son and I had a quick intro to some rules of the road from the night nurse and he was off…I was not. I’ll be here for 3-4 weeks while I get my chemo and the life-saving transplant.

With that in mind, I set out to start learning the new slate of names of the medical and support staff that make up the MTU and to be sure, I want them to remember me. In the time prior to being admitted, I found a souvenir shop downtown Seattle with a metal sign that was intended for a bar that read name your poison. Being one to be literal when it suits me, I bought the sign, wrote Busulfan on the sign, and hung it on my door. Keeping things light!  I have a few other smaller things for the upcoming days. I’m intent on keeping people smiling so that when I feel lousy, they'll get me smiling again.

With my sign on the left and my new fancy dancing partner flashing her toxic chemical goodness for all to see. I'll bet you're *so* jealous! ;-)

Late in the day yesterday, I thought we might be getting close to one of those points where I’d need a little help smiling. PICC lines have been the point of infusion and blood draws for the past six months, the most recent of which was installed about 2½ months ago. Sometimes, these catheters migrate a little and can be difficult to draw blood from.  Such was the case yesterday, so after some contortions to see if the we could get a blood return and half a dozen unsuccessful sticks into my skin (peripherals), I ended up having to get a new line installed. While it’s not as painful as a biopsy, neither is it painless. Essentially, a narrow tube about 16” long is routed through a vein in my arm up to a junction just above my heart near the superior vena cava. To get to a vein big enough to support that catheter, the nurse has to use an ultrasound and get rather deep into my arm. It’s semi-surgical. I stay awake for the whole thing and get a local injection of Lidocaine. When I found out I’d be getting a new PICC line installed, I was less than happy. This is actually my fifth. One of the nurses who had been trying (in vein?!)  to draw blood earlier was watching the procedure and was actually rather quick to offer me something for pain. I’m tired of hurting, so I accepted. I actually have developed a rather high threshold of pain, but after this long, I’m ready to adopt better life through chemistry as my motto until this odyssey is over.

This is a PICC catheter going in and yes, that's me. The keyboard to your left goes to an ultrasound machine that helps the nurse/IV technician find the best vein. Inside the central line catheter, there is a little metallic piece that is picked up by the gray yoke/magnetometer on my chest so the exact location can be determined. After he positions the PICC, I get an X-Ray to confirm it is in the right place and they put a sterile dressing on the insertion sight. You can see the line going in my arm through a small incision.

Thankfully, the pain passes in a day or so and I get back to my normal jovial self. Even my favorite Brooklyn-born nurse told me I that I looked good today. I’m feeling good…for now. I know everything could change on a dime, so I’m doing what I can to enjoy the moment – carpe momentum! – or something like that anyway. By the time the late afternoon arrived, it was just the two nurses and me – from a pretty noisy day to a quiet ward. Suffice it to say, with no other inpatients, the nurses and I struck up a good conversation until sleep finally caught me.  I don’t know if it was the pre-meds, nerves, or something I ate, but I was back to my old hospital habit of staring at the ceiling in the wee hours of the morning.  Last night though, I was out cold.

I started chemo yesterday morning at 0-dark 15. It had to be started with near military precision so that blood levels could be measured at prescribed intervals. That tells the pharmacist how to adjust the dosage – something called pharmacokinetics. Say that 3 times fast! Since it’s impossible to reverse, I’m strapping in and holding on for the rough ride ahead. The transplant itself is less than a week away…hard to imagine that in six days, I’ll begin the process of coming alive.  So many parallels could be drawn at this point, but I’ll hold back until I actually have the new stem cells coursing through my veins.

Certainly, there will be much to think about as my body starts succumbing to the toxic chemical goodness and I take a nose dive back into frailty. There will be a lot as well to build up on the recovery side. I took a tour of the all new Salt Lake City Public Safety Building just before I left for Seattle and I saw the particular members of the structure that made it capable of withstanding an earthquake. Much like that, I know that my own body will resemble that in a way. It may appear similar on the outside, but perhaps a bit different than I can conceive; and I know the rebuilding will be good as well as necessary and it will belie the inner strength that comes from a visit with death. You can’t not be changed when you stare death in the face, but neither should one be cavalier about it. The stakes are just too high and they are permanent. It’s gonna hurt and it’s gonna suck, but the cost of life doesn’t have a price tag. Time to embrace the pain; time to embrace the suck (see note below)

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

Music for the day from the Goo Goo Dolls - Better Days

And you ask me what I want this year
And I try to make this kind and clear
Just a chance that maybe we'll find better days
Cuz I don't need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

And it's someplace simple where we could live
And something only you can give
And thats faith and trust and peace while we're alive
And the one poor child that saved this world
And there's 10 million more who probably could
If we all just stopped and said a prayer for them

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again
Cuz tonight's the night the world begins again

"Embrace the suck" is actually a military term meaning: the situation is bad, but deal with it.

 

Drill, Baby, Drill!

Three times a week since I’ve been cut loose from the VA Hospital, my blood counts and chemistry have been monitored very closely. I’m now intimately familiar with WBC, RBC, HGB, HCT, PLT, ANC, and some other fun medical terms and drugs that I wish I didn’t know anything about. Since I have a central catheter (PICC) installed, getting a blood draw or an infusion of chemo, blood, or platelets are essentially painless procedures. They’re just time consuming. That became more of an issue as the weather got warmer and I became restless with being confined to the hospital. I got more of a case of cabin fever than anything else!

With a 28-day chemo cycle, my body's response was pretty predictable. That was the drill.

And then the call from Seattle came telling me that a bone marrow donor had been found and the routine changed. To be prepared for this new chapter, a bone marrow biopsy was required to ensure that I’m still in remission. I’ve had a lot of procedures, tests, pokes, and prods since this all began and honestly it hasn’t been bad.  More often than not, it’s a series of inconvenient truths that landed me in a hospital room and only when it became a cumulative thing did it really become what I would call bad. I would get something that, on a scale of 1 to 10, was a nominal 1 or 2, but when added to other 1s or 2s, it got worse and at some point, the group of small things overflowed and I would have my own personal meltdown.  A blood draw is not fun, but it’s barely a 1.  A headache is a 1.  Getting a PICC line installed is a solid 3, but those are really minor in the grand scheme of things because they pass rather quickly.  And let’s face it, a headache passes within 20 or 30 minutes after taking a pain reliever, so you can see that it hasn’t been too terribly onerous.

But there is one procedure I’ve had to undergo that has actually been pretty durned painful – the bone marrow biopsy.  There’s no getting around it – it hurts like a bear and makes you want to cuss like a sailor, but there’s no other way to test the marrow for cancer, so it’s a necessary thing.  Let me tell you how that works. The only way to get to the marrow is to get through the bone, of course. The site of choice is the pelvis and it’s closest to the skin in the small of the back.  If you reach behind you just above the waist line of your pants about 3” to either side of your spine, you’ll feel that special place where all the magic happens.

The nurse with that great combination of a smile and sympathetic look will introduce herself and bring in a cart full of goodies that would make Santa jealous. Then comes the doctor, replete with euphemisms and a packet covered in sterile white plastic with implements of torture that would make Torquemada jealous.  Remember, no one plans for the Spanish Inquisition, but they do schedule you for biopsies! This was my fourth…I know the drill, pun intended. The smiling doctor and the sympathetic smiling nurse then explain the procedure in a way that would sound no more unpleasant than a telemarketer calling during dinner (aka ‘pain in the ass’). Oh, the lies…they’re good at it with all the practice…and they smile all the while! I remember seeing a guy across the hall getting the briefing about a biopsy and I wanted to shout out to him, “It’s gonna hurt, get the drugs!” But the nurse closed the door. I never saw him again (insert frowny face here). Sure, it was because his procedure was done before mine and I was given some oral drugs for my chemo in my spinal cord, but we’re splitting hairs here!

Since this was my fourth biopsy, I asked the good doctor to spare me the euphemisms and move straight to me signing the release. I smiled and was polite about it of course.  I am a decent and polite guy, if not sporting a lively sense of humor with a touch of brashness at times, but hey, I know Santa Claus isn’t real and I know this is gonna hurt...bad.

Let the games begin!

So, I take my shoes off and hike my shorts down a bit and the good doctor starts to give me a sterilizing sponge bath on my back side. Isopropyl 2013? Open that puppy and let’s have a whiff of that lovely cork! Lovely bouquet with oaky undertones. Whine spectator gives it a 91! How many of you can say you’ve had that one, hmmm? It’s nothing special—it’s cold and you know you’ll have a questionable stain later. Yeah, it’s from the iodine, but people are just so suspicious! Alas, I digress.

Let the euphemisms flow effortlessly off the tongue!

“So, here’s that little bee sting” (translation – I’m giving you a shot to numb your back side so I can really hurt you). So, I feel the needle and the lidocaine expanding under my skin. My heart races a bit because I know what’s next.  At this point, she makes a small incision down to my pelvis, which I don’t really feel too much, but there’s some "pressure."  She tells me she’s numbing the bone, which I think is not something that is really possible, but it sounds good, doesn’t it? At this point, things take an ugly turn and I’m having flashbacks to Westerns where they give the cowboy with an imbedded bullet that needs to come out; and our unfortunate hero needs something to chew on.  In my case, I buried my face into the pillow and tried to grab on to something. For a lovely petite Asian gal, the doctor can wield an auger! I’ll be her forearms are shredded! Those white coats hide a lot, I’m sure. She takes a hand drill and pushes it into my pelvis and damn, it hurts.



For a petite lady, she sure could put some serious power behind that auger.  "And now, you'll feel some pressure."  Ya think? So, she drills through the pelvis and gets into the marrow. Where's that leather strap to chew on when you really need it?

Drill, baby, drill!

Once the drill has gone into the inside of the bone, she withdraws the bone core and draws out the marrow. Sucking that out also hurts like hell. She then withdraws the auger and puts a rather large Band-Aid on the wound and I’m done. She has me lay on my back for about half an hour and then I walk away. It takes all of about 15 minutes start to finish and I’m left with a dull throb.  My pain level spiked at a solid 6 or 7, but now as I walk out, it’s barely a 1…and I’m feeling a bit shaky. The nurse with the sympathetic look? Well, she's really looking the part now and the doctor has said, "sorry" about 8 times. She knows she hurt me.

You can see the doctor pulling out the aspirate marrow.  Lovely, huh?

I have a pretty high threshold of pain and I realize this is something I need to have done since AML is a disorder focusing on marrow and I of course, am getting a marrow transplant, but there has to be a way to alleviate the pain more than popping a couple of pills.  It’s not important that I’m awake for the procedure even. Alas I digress once again and I am not, by nature, a complainer or whiner and I don’t even take aspirin unless I have a helluva headache…but come on! I have a PICC line in my arm.  Would it hurt to put something to take the edge off in that little line?

Ah well, what doesn’t kill you makes you stronger, right? I guess I should be getting pretty strong.

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

Today's music - Broken by Lifehouse

 

The broken clock is a comfort
It helps me sleep tonight
Maybe it can start tomorrow
From stealing all my time

And I am here still waiting
Though I still have my doubts
I am damaged at best
Like you've already figured out

I'm falling apart
I'm barley breathing
With a broken heart
That's still beating

In the pain
There is healing
In your name
I find meaning

So I'm holding on
I'm holding on
I'm holding on
I'm barely holding on to you

The broken locks were a warning
You got inside my head
I tried my best to be guarded
I'm an open book instead

And I still see your reflection
Inside of my eyes
That are looking for purpose
They're still looking for life

I'm falling apart
I'm barely breathing
With a broken heart
That's still beating

In the pain(In the pain)
Is there healing?
In your name(In your name)
I find meaning

So I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you

I'm hanging on another day
Just to see what you will throw my way
And I'm hanging on to the words you say
You said that I will be okay

Broken lights on the freeway
Left me here alone
I may have lost my way now
I haven't forgotten my way home

I'm falling apart
I'm barely breathing
With a broken heart
That's still beating

In the pain(In the pain)
There is healing
In your name(In your name)
I find meaning

So I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you

I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you

 

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?

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)

Passive-Aggressive

When I got my diagnosis, I felt like I was in that scene from Mel Brooks’s High Anxiety where he’s falling, spinning, screaming. Meanwhile, back in the sterile room, I was speechless, listening to the two hematologists from the Huntsman Cancer Institute explain to me the pathologist’s report and insisting I drop everything and get admitted into the VA Hospital right away. My life was about to start spinning out of control – specifically, my control – for quite some time. And the kicker was, no one really knows how long that period of time is.

“What would you do if this were your son,” my mom asked. The doctor said without any inflection, “Admit him and treat aggressively with chemotherapy immediately.”

Did he really say immediately? Why, yes he did. He repeated the pathologist’s finding that 50% of my bone marrow had some nastiness, something called monoblasts or promonocytes that shouldn’t be there. They should be maturing into full-fledged blood cells, but for some reason, they’re not. And that reason, crime-stoppers, is acute myeloid leukemia and he pretty much laid out the stunningly good news that if I did nothing, I’d be pushin’ up daisies in about 90 days. Be sure to invite this guy to your next party!

That night, I began the odyssey. I remember closing my eyes in the claustrophobic confines of the MRI tube mulling over the new reality that something inside of me that I couldn’t feel, see, taste, hear, or smell was trying to kill me. No sci-fi monster waiting to jump out of my chest, no parasite from an exotic destination vacation, no comeuppance from a life of self-abuse, just an anti-climactic lab report with some really bad numbers. Throughout that hour of solitary confinement, broken up by unpleasantly loud clicks, bangs, and weird noises, I realized that I didn’t even know the questions to ask. The only thing that went through my mind was, “What’s going to happen to me next?” Maybe that was a good thing as I broke the news to my immediate family because I didn't know the answers to the questions they had and I wouldn't have to prolong this awkward and quite frankly very disturbing conversation punctuated by gasps and pregnant pauses. In reality, what came next essentially was getting smart about what this leukemia thing is and what I can do (and not from the Internet which takes you from a commonplace symptom to death in about three easy clicks!). 

During my first week in the hospital, one of the hematologists came in and asked, “How are you doing today?” Trying to be friendy, I jokingly tossed back, “Well, I don’t know, you tell me!” The discussion that followed really drove the point home that he wanted my input, my involvement. He wanted to know the details from my vantage. It was in that moment, I realized that more than my positive attitude, I needed to really be engaged with my own treatment, not just cognizant of what was happening. Paying attention to what the doctors were prescribing, what the nurses were doing procedurally, and how my body was responding and feeling all became vital to my healing process.

I’ve stopped things from happening that weren’t OK, refused unnecessary medication, or prevented additional procedures that caused extra unpleasantries from being inflicted just by paying attention and asking questions. No doctor or nurse has yet to be offended. From what I’ve seen, they’ve used them as teaching points for me and it reinforces that I’m in good hands.  If they don’t know the answer, they’ve stopped what they’re doing and gotten the answer from someone else, but in the end, I’m still being taken care of very well. The bottom line is you know your body and what ‘normal’ should feel like. When you’re under the care of a medical professional, it’s important to communicate in a way that you both understand what’s happening and the nature of the discomfort or feeling you have that’s not quite right.  Here are some examples of things I brought up.



• My blood sugar showed an alarmingly high reading (>500) when it was normal every other day. I noted that during my first round of chemo, I was given a constant drip of something called D5-half (the “D” stands for dextrose, a form of sugar). This was given at the same time as the chemo drug. While an inpatient, I had my blood drawn every morning for something called CBC (where the types of cells are quantified, essentially) and chemistry. The blood is drawn through my PICC line – the same line where I get the IV and chemo.  If those other drips aren’t stopped, guess what gets mixed with the blood? A couple of days’ lab tests were skewed as a result and I had my fingers unnecessarily pricked on the hour to test my blood sugar, all readings being normal. My questioning the procedure stopped the finger pricking.
• I was beginning a session of chemo one morning and when the nurse flushed my PICC line, I could hear it in my ears, which was very odd. When the pump started, I could feel it in my chest, something in the many IV pushes I had never happen, so I stopped things right there. It wasn't uncomfortable, but it wasn't right. A quick trip to X-Ray showed the PICC line had diverted away from my heart and into my jugular vein.
• After three rounds of chemo, my body is pretty consistent in the way it responds. For example, at about day 10, my neutrophil count starts to plummet and by day 12, I’m in a neutropenic condition, meaning my immune system is pretty compromised and I have to take certain precautions. During my first round of chemo, I asked for prophylactic drugs to keep me from coming back through the Emergency Room. The hem/onc fellow at the time called me every day following my lab tests to let me know what my counts were and when to start taking the antibiotics / anti-virals. It worked great; the second round, not so much. I didn’t get the calls from the hem/onc that had rotated in and I ended up with a neutropenic fever that got me admitted for a lovely 4 days. Lesson learned: just take the meds when you know the numbers will tank. The new hem/onc fellow who rotated in agreed with me…and I’m doing very well even though as of yesterday my neutrophil count was a big goose-egg! No fever, feeling great!





This was right after the nurse had
exerted some serious pressure on
the hand.  You can see the beginnings
of what looks like a bruise.

• 

  

  Thankfully, it doesn't hurt as the
  nurse said it would. Just a little
  discoloration.

  This Monday, I asked to get a blood type and screen because on day 14 of the chemo cycle my platelet count falls to the floor and without sufficient platelets, you have this nasty tendency to bleed. My request was politely declined and as I was driving home, I got a call from the physician’s assistant I’ve been working with to come back for a – yes, you guessed it – blood type and screen because I’m critically low on platelets (4k/μL – normal is 150k-450k/μL). So, as instructed, I went to the lab to get it drawn. The lab folks are pretty damned good at what they do and have a way of keeping the needles from hurting.  I don’t know how they do it, but they do! The first stick didn’t work. My vein collapsed around the needle apparently. The second stick went in my left hand and he was able to get the sample. On my way home, I felt an itch in that hand and looked down and saw the top of my hand where the sample was drawn swollen about the size of a golf ball. It was really quite amazing. So, at the very place I had taken a U-turn to go back the first time, I made yet another U-turn and went back to the ward and asked, “Is this serious or will it go down by itself?” The nurse’s gasp said it all.  She escorted me to a chair rather quickly and put all her weight on the hand to stop the bleeding. I won’t say, “I told you so, but…” Here are some before and after pictures. I had the presence of mind to come back to the hospital, but I didn’t get a chance to take a picture of the swollen hand.

My point in these examples is not to accuse anyone. We all make mistakes and none of these are really serious even though it did cause me some discomfort and inconvenience. It just drives the point home that regardless of how small the procedure, no matter how trivial the detail, I have to pay attention and if I don’t understand something, I should ask.  I have to manage my care because it’s my body and it’s my life; and I’m responsible for it and I have others available if I'm not coherent to do the same for me. I trust the doctors and nurses to do their job of course, but I have to work with them to fully bring about my healing.

Note that I use the word healing rather than treatment. That’s because I see this whole adventure as more than something happening to me.  It’s beyond restoration to a previous state.  We’ll get there, of course, but the medical aspect of cancer treatment is only part of the big picture. And that’s where my involvement, as the patient, is critical.

You see, this isn’t happening to me although technically that is the case.  Something this big is transformational and it requires participation, my participation. I can’t be passive, but with the same urgency that the doctor who sat across from me insisting I be admitted that night, I have to be aggressive in my own healing.

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

Today’s music – Fix You by Coldplay

When you try your best but you don't succeed
When you get what you want but not what you need
When you feel so tired but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I

Tears stream down your face
I promise you I will learn from my mistakes
Tears stream down your face
And I

Lights will guide you home
And ignite your bones
And I will try to fix you

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

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

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

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

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

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

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

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

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

 

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