Seriously?

I’ve had the great good fortune to be attended by world-class doctors. My attending physician and the fellows during my stay at the VA Hospital in Salt Lake City were affiliated with the Huntsman Cancer Institute and I’m finding out the doctors here in Seattle are similarly affiliated with another very well respected cancer hospital, the Fred Hutchinson Cancer Research Center, or “the Hutch,” as I hear people call it. It turns out that the stem cell transplant procedure was pioneered there and my attending physician is a veritable rock star in the hem/onc world, often away on speaking tours. To say I’m humbled to have this caliber of people in my court would obviously be an understatement!

In larger-than-life people like this, you might expect to come across a doctor with the stereotypical “god complex,” but I honestly haven’t seen that. I only had one encounter with one who was a bit on the insensitive side, but we sorted out our differences and as far as I could tell, all was well with the world afterward. What I haven’t quite gotten used to, though, is the matter of fact way some pretty ugly facts can be communicated. Some involving the side effects of the treatment are really hard to process, others leave me shaking my head thinking, “Seriously?” Yeah, I know they all mean well and it’s all in a day’s work, but feelings sometimes get ignored when the greater issue is saving the life. In the grand scheme of things, that makes sense, but the flip side of that coin is that feelings really have to be taken into consideration, precisely when you’re talking about saving a life…it’s the life which is at stake.

That may sound obvious, but the heavy conversations with doctors can make me feel like I'm missing the forest for the trees, so to speak. It’s so easy to focus on a detail and zone out while the rest of the paragraph the doctor is speaking just flies over my head. That’s the best reason I can think of to have at least one other person with you as you are working through one of those difficult conversations. It made a world of difference when I got my diagnosis as I just wasn’t able to process the whole picture, let alone formulate questions.  

It has been interesting and challenging as doctors have attempted to communicate next steps and side effects to me. The more sensitive issues I’ve tried to bandy about with some humor to make the message a little less difficult or awkward, sometimes to the dismay of the one trying to impart said message, but…I am, without a doubt, the eternal class clown underneath my staid exterior. Recently, a friend of mine welcomed me home from the hospital after a round of chemo and told me in the same breath that he was now a member of the cancer survivor club. He can be a cut-up like me, but his doctors were far less amused by his repartée than my doctors have been with mine…he just needs more practice, clearly. While my doctors learn quickly that while I do pay close attention to everything they say, I will be quick with a pun, a double entendre, or a word play to keep things a little less dour. After all, you gotta keep it just a little on the light side when you’re talking about dark topics. Even checking in, I'm quoting Monty Python lines … I'm getting better. I think I'll go for a walk. I feel happy!

And then there are topics that you just have to learn to take in stride because it’s all part of the game that is cancer, like all the really interesting changes that happen to your body. One of my first hem/onc doctors very sweetly put her hand on my shoulder and said, “You know, you will lose your hair.” True to form, I retorted, “I know, I saw the movie.” About three months later as I saw my hair returning, I saw her in the hallway and told her with great delight about this discovery. She got me back from the first time. “Well, you know,” she said, “you’ll lose it again.”

Touché, madame doctor! Well played.

During a conversation with one of the docs last week, he casually said to me, “You know, it’s a good thing that when you get to be your age; body image is far less an issue than with younger guys.”

Seriously?

My age? Doesn’t he realize I’m the youngest guy in the ward? I know, I know, that means diddly! I’m 50 freakin’ years old. That is my age. Now, this doc probably isn’t too much older than I am, but surely, he must have had some of the emotional struggles as the gray starts encroaching in on previously uncharted territory and the skin is a little less taught, not to mention all the other lovely physical changes that are part and parcel to aging. But let’s not forget that recently recovered hairline is about to recede all the way off again and we can probably add a little puffiness from the steroids to stave off the GVH...oh and damn, thanks to the chemo weakening so many things all over my aging bod, I broke yet another nail! Sorry, doc…body image is a big deal.  I can only imagine how women going through this feel. When I lost my hair during the first round of chemo, some nice people said I looked rather academic and my brother even shaved his head as a gesture of solidarity, but… *sigh* there’s no getting around the body image issue. It’s just as hard for us middle-aged folk as it is for the young guys.

And making this even more fun, I got a call from the MTU pharmacy at the VA Hospital here in Seattle this afternoon as I was on my way out, asking me what color the lumens of my PICC line were. That was an entertaining discussion of course, but it was outdone by the next call from one of the nurses at the MTU at the VA Hospital asking the same question. Then, of course, I got the fun news that I would be admitted tomorrow night for pre-meds instead of Wednesday morning. Oh, let the fun begin a bit early, shall we?

Seriously, I go to bed tonight with a lot of trepidation. I know it's gonna suck and there's no turning back. I can kid around and make a lot of jokes about it, but in the end, it's a scary proposition. I've received a lot of rather long, well thought-out and heartfelt e-mails and well wishes in the past 48 hours which tells me that there are a lot of people sending their prayers, best thoughts, and love my way. Over the next few weeks, I'll need all the available "close air support" you can muster.

Be well, stay very strong for me, and mucho màs love to you all.

Music for the day from Incubus - Drive

Sometimes, I feel the fear of uncertainty stinging clear
And I can't help but ask myself how much I let the fear
Take the wheel and steer
It's driven me before
And it seems to have a vague, haunting mass appeal
But lately I'm beginning to find that I
Should be the one behind the wheel

Whatever tomorrow brings, I'll be there
With open arms and open eyes yeah

Whatever tomorrow brings, I'll be there
I'll be there

So if I decide to waiver my chance to be one of the hive
Will I choose water over wine and hold my own and drive?
It's driven me before
And it seems to be the way that everyone else gets around
But lately I'm beginning to find that
When I drive myself my light is found

Whatever tomorrow brings, I'll be there
With open arms and open eyes yeah

Whatever tomorrow brings, I'll be there
I'll be there

Would you choose water over wine
Hold the wheel and drive

Whatever tomorrow brings, I'll be there
With open arms and open eyes yeah

Whatever tomorrow brings, I'll be there
I'll be there

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

 

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)

The Autumn Leaves – or – Hair Today Gone Tomorrow

If – and that’s one big honkin’ rhetorical IF – there were a honeymoon phase to this little soirée, it is officially over. Of course, there have been a rough past couple of feverish days, then there’s the body re-boot, and now that the first round of medical bills is showing. My new reality of not being able to really work like I had hoped has made long-term disability a necessity. Please bear in mind, I am not sending out pity party invitations or asking anyone for anything, but I include it in my discussion because when life becomes overshadowed by a long-term illness, nothing escapes unscathed. While I went into this with both eyes open, actually walking through it is another thing entirely.

My hematologist was so sincere and sympathetic as she put her hand on my arm as I began chemotherapy. She said, “You know, you will lose your hair.” I smiled and said back in an equally sincere tone, “Yes, I know. I’ve seen the movie.” Everyone here knows me well enough now to expect me to be forever cracking jokes. Humor is how I’m coping. We’ve all seen the movies, the traumatic clumps of hair in the brush, the horrified looks, and so on. What those movies don’t tell you is that it’s not just the hair on your head – it’s EVERY hair on your body and it’s anyone’s guess where it starts or if it’s even in an area at all.

I had an inkling it was beginning now a good three weeks into this gig. I figured when I ran out of shampoo, I’d run out of hair and I think that’s going to hold true. It’s not like you feel it come out and since I keep my hair cut short, I haven’t actually used a comb since 2009. Not using a comb or brush hasn’t encouraged the deforestation of my mane, but I did notice the suds in the shower drain grating had a darker, grittier look to it today and sure enough, it’s a happenin’, boys and girls. Suffice it to say, today’s shower was an adventure into body image and a farewell (albeit temporary) to the stuff that science uses as a criteria for us being mammals.  Adding to that, since my normal temperature has been running 94° to 96°, maybe I’m a different sort of life form altogether! Suffice it to say, I’m not reveling in how much money I’ll be saving now that I won’t be needing my monthly haircuts and all the accoutrement into mane-tenance! Yeah, there’ll be time for all that again soon enough. It does grow back.

I have a couple of the beanie / skull caps, a handful of ball caps, and a number of cycling caps, but as I’ve generally worn caps for function rather than for appearance, I’m not sure which route I want to take as I maintain my own persona but functionally keep my head warm. Granted, it’s very common nowadays to see men with intentionally shaved heads, but there’s a distinct look to someone who has lost his hair to cancer – no stubble and likely no facial hair. So, while I’m no fashionista, I’m neither trying to call attention to the baldness nor am I trying to totally hide it.  Basically, I’m trying to find the best way to roll with it and essentially make it mine for the time I’m holding this poorly-dealt hand. And the other thing I’m trying to navigate is other peoples’ reactions. I empathize with the discomfort that cancer evokes in discussion; but in person, it can be multiplied. 

Part of me wants to make light of it by becoming a caricature of sorts like Kojak with the fedora and tootsie pop. Maybe I could sport one of those nifty English driving hats…but in reality, I just want to be comfortable in my own skin and more to the point, I want that skin on my head to be comfortable while there’s no hair to shield it from the sun…and I would be dishonest if I didn’t attribute a little vanity there as well. It’s an abrupt, unwelcome change, so while there are a number of things I’m working through internally, this one is right out there and in my face, literally. That ‘man in the mirror’ has a familiar look to him, but wow, he looks like he has taken a real licking! … but, yes, still ticking.



I have to wear these wonderful little yellow masks any time
I leave my room.  I want to use a Sharpie and write something
on my masks to make people smile. Note the last time I will
be sporting a full head of hair for quite some time!

The steady stream of white coats today found I was a boring subject as I had no pain they could question, no fever they could investigate, and no infection they could study under microscope. Their consensus: boring is good! I would tend to agree with their pronouncement as it relates medically. Now one particular item that was anything but boring came about this afternoon as my run with my buddy Flo was over and I was free of infusion lines (I’ve named my IV pole after the waitress with the “kiss my grits” attitude on the sitcom Alice – double entendre intentional). My daughter, Dassi, has been in town to help out, so this afternoon, along with my mom, sister, and niece, we all ventured beyond the confines of Building 1. For me, it was the first time outside since being admitted. Sharing laughs with the feel of sunshine and fresh air was more therapeutic than the pills and infusions. Yeah, I still had to wear the surgical mask, but it was a small price to pay for a little piece of happiness!

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