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  It also allows blood to be withdrawn directly as well, which makes it essentially painless for daily lab blood count and chemistry draws.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.

Inevitabilities

Denial is not just that river in Egypt.  Denial is one of the steps in grieving a loss and as much as I wanted to deny life as I knew it came to an abrupt end, it wasn’t. It’s not a permanent change, of course, but for the foreseeable future, my ‘routine’ is anything but. And to be sure, there are some things I will just have to be mindful of for the rest of my life, many of which I don’t know about yet. Considering my rather heretofore happy-go-lucky approach to my health might have landed me in the morgue instead of the hospital, I’ll have to be more attentive to the little things and actually see a doctor more frequently rather than shrugging things off.

I think I’ve been in a bit of denial about this whole leukemia thing even though I’ve certainly been in some serious discomfort thanks to the chemo. On the one hand, the only thing that has been an indicator of my condition has been a series of lab reports; on the other, not believing them and continuing on as if nothing were wrong would be to literally put my life in peril. It’s hard to reconcile the two, but at the end of the day, I can be grateful that some pathologist was insistent and that she made her case to an attentive hematologist, who in turn, laid out the facts before me in such a way that cut past the bravado and got me into treatment right away. There’s really no way to know just how much time I had before things got really ugly and I don’t even want to conjecture as much, yet…I really would rather be doing the routine things that we all take for granted without a surgical mask and with a full head of hair and all those things you just don’t give a second thought to.

I finally gave in to the hair loss.  It had been coming out in clumps and then it just stopped.  I had patchy areas that made me really look awful, so I figured I’d clip it all down to about ¼”, but when I put on knit caps, it was really uncomfortable. It pushed those stubbly hairs back and it bordered on painful, so yesterday morning, I took my razor into the shower with me and started shaving it all down clean.  I didn’t realize just how much hair I still had, but once I finished up, it was so much more comfortable to put on a cap, especially at night. I can’t say my appearance is that much better, but I’m not uncomfortable any longer. While my hair was falling out, I could rub my face and see clumps of whiskers fall away, so I did the same thing and shaved my face for the last time and I suspect I won’t need to buy a razor blade for some months to come. The rest of my body hair is just kind of doing its own thing.  I suspect that it may or may not fall out at this point, but since I’m getting repeat rounds of chemo, I think it’s fair to say that we’ll see another round of hair loss.  It’s not as uncomfortable, but just plain weird.  It’s not as obvious as head hair though, so I don’t really care as long as it’s not uncomfortable.  I’ve only shaved my legs down as a cyclist a couple of times and I there’s obviously no competitive edge – real or imagined – to shaving down here, so I don’t care to invest the time.

I’ve said many times how overwhelmed I have been by the outpouring of support and love, but I was totally surprised by my brother’s solidarity in shaving his head yesterday as well. It’s not something I would have suggested and he actually asked if it would be OK prior to his putting his own head on the chopping block, so to speak. He and my sister in-law, Tara, brought me a t-shirt and a coffee mug from their cruise (and yes, I am going to go back to sea with them after this is all said and done!). But what surprised me was the stirring tribute on his facebook page (note: I am not dying or going anywhere, but I’m nonetheless justifiably touched!).

There are a lot of inevitabilities in this life, most of which we think we know, but take us by surprise. We will all face crises at some point, whether it’s with someone else or ourselves. This crisis in my own life has taught me so much already and while I’m not keen on some of the lessons, I can certainly expect that I will come across many more before my time in the hospital is over. I can only hope that I continue to meet these lessons with the optimism and grace that I’ve been able to thus far. I honestly don’t feel like I have it together some days and my patience, as you may have picked up on, grows rather short some days. In the meantime, I’m trying to smile and continue to keep everyone, most importantly myself, smiling. On the flip side, we’ll all face successes, which try our character as strongly as crises do. While a personal disaster will test our personal courage and have the unique capability of bringing out the best in us, successes have the unwitting effect of testing our integrity. Failing that test is far more painful than falling down from an injury as those unseen wounds will continue to fester.

My hope is that you realize enough success to make you happy and when your successes multiply, that your character meets the challenge…and when you find yourself battling your own crisis that you find the courage to beat the hell out of it!

Music du jour: U2’s Beautiful Day.

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

Round 2

Yesterday marked the official beginning of round 2. I got to be on the receiving end of a large needle into my spinal cord, but thankfully, my hem/onc doc is really good at this particular kind of intrathecal chemo and with the help of a little happy juice, felt no discomfort at all. She has earned my trust with some of these less than pleasant procedures. And I got to watch her go toe-to-toe with another hem/onc doctor from the Huntsman. I know she’s got my back…even if she’s putting a needle in it. It’s not the same thing as being stabbed in the back although it sure looks like it! I got the ok to floss my teeth and shave until my numbers dip again. Since my hair hasn’t fallen completely out, I trimmed it down, but it’s uncomfortable to wear a knit cap. It has this way of pushing the hair stubble against the grain as the cap is settling in. I’d rather wear a knit cap while sleeping instead of a ball cap since there’s the brim, of course, but hey, I’m working through the fun.  My whiskers had been falling out as well, but since things have come to a halt on the deforestation, I shaved them all off and I suspect I won’t have to pull out a razor for some months to come.

Today, I got a heavier dose of the Cyterabine. I get a concentrated dose every 12 hours and then I’m free of the IV pole. The goal here is to drive my white count back down to nutropenic levels and then when my neutrophils recover, then I go home until either the bone marrow donor is ready or my next 28-day cycle starts.  So, it really comes down to how my body responds to the chemo and recovers. Suffice it to say, I am hoping that I’m back in my own digs VERY soon. Yeah, I do like the people here and the food is pretty good, but I’m kinda partial to my own four walls instead of these institutional ones.

My transplant application has been forwarded to Washington, DC and my name is now officially on the radar in Seattle, so it’s now the official military “hurry up and wait” game. From my standpoint, I just want this over and done and since I’m pretty white bread Caucasian, my wait time will probably not be too long, but I’ve been advised that it could be a matter of months, so I’m weighing the realistic with the part of me that just wants this to be done.

I had the same nurse with the twisted sense of humor today and that kept me smiling. She had an assistant whom she was training, whom I found had spent some time in France, so it looks like I’ll have someone with whom I can practice my fragmented French. Language is something you remember like riding a bike, but if you don’t use it, you get rusty.

The quiet, boring day is a good one, medically, but of course I’m itchin’ to be productive and involved. We’ll get there and thankfully, I’m able to work with my company to stay involved. Thankfully, I have some things that I can work on and stay a part of things.

That tonight’s entry is rather short is a good thing. You can be sure that something will arise to keep things interesting, but for today, it’s mercifully boring.  And that’s a good thing! Today's music video is another throwback to the 80s when music videos were in their infancy. Hold On by Kansas.

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

It is what it is…but it’s not where I want it to be

It is what it is. It’s something I find myself saying a lot, especially in situations where it looks like I really can’t do anything about it. But it has unfortunately become something that a lot of us – myself included, of course – say when it’s too easy to shrug our shoulders and move on instead of finding the answer. Lindsay, one of my med techs at the VA amended that little ditty the other day and it stuck with me. She said, “It is what it is, but it’s not where I want it to be” in completing a thought of mine. You see, there’s this little thing called chemo brain, which is a real thing, by the way, that is akin to what we all euphemistically call ‘senior moments,’ ‘brain farts,’ or whatever. You get the picture.  So, she asked how I was doing that day and in my eternally optimistic way, said I’m doing ok even though I was really not feeling so terribly swell and catching on, she said what we all do, “It is what it is.” I responded, “Yeah but…” and she completed my thought, “…but it’s not where you want it to be.” That’s when the light bulb went on for me and that little boost actually made me feel just a bit better.

My hair is coming out in massive clumps and my pillow looks like a barber’s floor. It’s not that this is an unexpected surprise, but it’s still a bit dismaying nonetheless.  I don’t know that I want to take the clippers and make a bigger mess.  I’m kind of liking the leisurely shower method of hair deforestation. Yeah, I’ll be buying a bottle of drain cleaner or two to clear up the mess, but it’s a small price to pay. After all, I won’t be buying hair or shaving products for a while. Weigh the pros and cons on that one…ok, I’d rather buy the stuff than look like a sickly ol’ guy. I’m at the in-between stage where I look like hell, but feel ok. When it all falls out, I’ll look like a bona fide cancer patient, but right now, let’s just say, I won’t be posting any pictures.  I could scare small children and pass for a zombie if I had the right mannerisms. It’s another ‘it is what it is’ kind of thing for me. It’s happening and it’s not something I can do anything about other than accelerate the process.  But as I wander through my own thoughts, I find there are a probably a lot of things that can add that ‘but it’s not where I want it to be’ part that I can do something about it.

The thing is, most of those 'it is what it is' things are insidious little details that when piled up, turn into a pattern of apathy or laziness. It’s not who I am, yet those little shrugs of the shoulders, those decisions for what seem like pettiness end up becoming piles of stuff that just never get done or end up taking extra time later when I’d rather be doing something more fun or productive. I felt that way this morning as I was wading through the prodigious pile of mail that had arrived during my hospital stay.  While I had scheduled payments and taken care of some things ahead of time, the paper trail took some time to go through and find out what was important and what wasn’t.  It took the better part of the morning to get through it all and I still have a few piles of stuff that I just need to find a place for. Maybe it’s just my own version of spring cleaning that needs to happen. Now, before you wag your finger at me for even thinking about overexerting myself in a flash of white tornado fury to clean, rest easy. I’m still in recuperation mode. Besides, when it’s officially the first day of spring and there is snow flying, “spring cleaning” just doesn’t quite seem right. This here ground hog is waiting for the end of winter.

I’m finding, too, that the ‘it is what it is’ is an attitude. The same med tech that  inspired this little post loaned me a little book called Anatomy of an Illness that I started last night. I can see that the gist of the book is the role of the patient in healing. The author’s optimism, laughter, and positive attitude was the key to his healing of a life-threatening illness.  I can’t cite the details as I’m just beginning, but it struck me that the ‘it is what it is’ is akin to throwing in the towel and just letting things happen.  If you’ve read any of my posts to date, you’ll know that my stance has always been to fight this leukemia with positive attitude, optimism, and a dash of crass humor. It’s not because of a book, not because of some idealism, but it’s just who I am; and why should I languish as a victim, even though I had nothing to do with this? I’m convinced that half of my healing is due to the talent of the medical staff and the alchemy of pharmaceuticals that are being prescribed, but that other half is all the soft stuff – your continued prayers, positive ju-ju of all varieties, and support that all contribute to my own attitude. Hey, I’m home nearly a week early.  Don’t ever doubt that what you do has an impact on others. I don’t!

I continue to be grateful for each and every one of you. Yeah, it is what it is…but it’s not where I want it to be. And together we’ll move it to a better place!

I wanted to find the 'official' video to Journey's Don' Stop Believin', but there really isn't one. I don't like live really. Journey was one of my favorite bands. When this hit came out back in 1981 when I was in high school, music videos were in their infancy and MTV actually showed music videos full time. Anyway, it's my chanson du jour. Sois sage et appréciez!

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

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!