Not Going Gently Into That Good Night

OK, let me just say up front that supernatural and paranormal flicks have always been a bit of a guilty pleasure with me from the time I saw the black and white images of Bela Lugosi as the quintessential Dracula. As a young kid, it was a treat to stay up late on Friday nights for Nightmare Theater. When 11:30 rolled around, Fireman Frank, the guy who hosted the local morning cartoon show for us kiddies on Channel 4, would don his spooky alter ego, turn up the reverb, and do the voice-over to introduce the old Universal and RKO horror flicks. Yeah, the vampire thing goes back a few years. Suffice it to say, when the remake of Bram Stoker’s Dracula came along in 1992, I was delighted. It was scary, horrifying, and engaging. As an adult, I still like a fun scare, but the gratuitous gore so many current movies depend on is a big turn-off for me, so my current guilty pleasure is vampire flicks or TV series. Being Human, True Blood, and Moonlight are the ones I’ve taken to as of late and I even liked the story behind Twilight saga even if the acting couldn’t keep up with it.

The inimitable Bela Lugosi

There are so many parallels to the vampire mythos as I enter this next phase of my treatment. I joked that with all the blood that was being drawn from me that I’d be sparkling like the vampires in the Twilight series. Prior to coming to Seattle, I’d been infused 11 times.  I was advised yesterday morning that before the transplant process is complete, I will have received about 40 more units. It’s a good thing I had donated blood so many times when I was on active duty! With all those deposits to the blood bank, I guess you might say I’m liquidating that IRA. The clincher that puts me on the marquis of Le Théatre des Vampires is the sensitivity to the sun following my transplant.

No bursting into flames, but anti-rejection drugs will make me vulnerable to sunlight as it has a tendency to activate something called graft versus host disease (GVH). In some extreme cases, it can be lethal. Long sleeves, wide brimmed hats, sunglasses, and sun block are essential to my well-being for the foreseeable future. Time to make it part of my persona and own it.  Being of Scandinavian descent and living at high altitude, I’m pretty conscious of what the sun does to us fair-skinned folk and I even keep sunscreen in my trunk, but this is ratcheting things up a notch or two…or five. I’ve made a trip to the mall and REI to get some long-sleeved shirts and I found a fun wide-brimmed hat at the Pike Place market, so we’re on the right track.

For someone who is very active outdoors, this newly imposed sensitivity is a tough pill to swallow, but again the alternative is, as I’ve pointed out before, pretty dire. I’ve been advised that life as I knew it doesn’t go away, but rather some new habits to protect myself simply have to be incorporated. It means ordinary things like driving will require me to have sun block and my exposure to sunlight while skiing or cycling (my two favorite sports activities) will have to be in smaller increments and again involve sun block. In my meeting with the doctor yesterday, he cited an example of a cyclist who turned to riding at night. Bottom line: you do what you have to do in order to stay safe, sane, happy, and alive!

My appointment was intended to be a consent meeting for paperwork, but it got cancelled at the last minute and I met with the attending physician. He went over all the ugliness that could possibly happen much like those interminable pharmaceutical advertisement warnings, except this time, I paid attention because it was about me and all the fun will begin on August 14. The subsequent seven days will be what is referred to as the conditioning regimen. It will entail some pretty awful stuff and I’ll lose the hair I just grew back. Hair today, gone tomorrow. Right? It will also make me feel pretty damned sick. All the nausea and vomiting I’ve missed out on by being healthy the vast majority of my adult life will all visit en masse and the new brand of toxic chemical goodness will also do away with the mucous linings that make it possible to eat with any comfort. It will change the way my food tastes and at some point, I’ll get my meals through the PICC line in my arm. If I manage to eat during my stay, I’ll be the exception. I had attended a social gathering hosted by the Utah Cancer Action Network where someone had suggested I get a personal chef to ensure I got proper nutrition during my chemo. I was just a little bit taken aback...but keeping that in mind during my meeting, I asked the nurse what role nutrition played in my healing.  The nurse said (and I’m not sure how serious she was), “Some people see the hospital food as supplemental,” suggesting that I may want to bring in my food from outside. I’ll get my pad Thai after all…now to find a way to get it down and keep it down! I'll be meeting with the dietician soon and those questions will be answered.

After about 3-4 weeks inpatient, I’ll continue my treatment as an outpatient, commuting to the VA Hospital, replete with a chauffeur (my older son) and a nurse at the hotel to hook me up to an IV (my older son) and personal shopping assistants (my sons) and all-around good guys (my sons). OK, so I’m biased, but just a bit.

While the strain on my body for this procedure is a bit more rigorous than the mini-transplant, there are apparently fewer complications and less chance of relapse. Recovery time is also shorter, so provided everything runs smoothly, I’m focused on heading home the first week of December. I’ll have to return to the MTU at the Seattle VA for routine check-ups both for the leukemia and for two clinical studies.

So, there are a few more days of classes for my son and me to attend and a fun day and then the transition to the ‘dark side’ begins. No sparkly sunshiny vampire remarks. My restrictions are more like those of Mick St John's in Moonlight anyway…now I just need the supernatural powers. Yeah, I know, not gonna happen. But hey, you gotta admit the being brought back from the edge  of death thanks to someone else's blood parallels things pretty closely.


Alex O'Laughlin playing Mick St. John, a private investigator
 who also happens to be a vampire. It seems that every series
has some unique twist on the myth. In this TV series, he can be out
in the sunlight, but only for a short while. Stakes in the heart only paralyze.

Oh, I should point out that silver won't do me any harm, but a stake in the heart will still most certainly do me in permanently. Suffice it to say, I’ll steer clear of them as well as the sun.

Be well, stay strong, and much love to you all (seriously … or I’ll bite your neck because I may need your blood!)

Today's music is from Laura Branigan - Self Control

Oh, the night is my world
City light painted girl
In the day nothing matters
It's the night time that flatters
In the night, no control
Through the wall something's breaking
Wearing white as you're walkin'
Down the street of my soul

You take my self, you take my self control
You got me livin' only for the night
Before the morning comes, the story's told
You take my self, you take my self control

Another night, another day goes by
I never stop myself to wonder why
You help me to forget to play my role
You take my self, you take my self control

I, I live among the creatures of the night
I haven't got the will to try and fight
Against a new tomorrow, so I guess I'll just believe it
That tomorrow never comes

A safe night, I'm living in the forest of my dream
I know the night is not as it would seem
I must believe in something, so I'll make myself believe it
That this night will never go

Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh-oh-oh
Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh-oh-oh

Oh, the night is my world
City light painted girl
In the day nothing matters
It's the night time that flatters

I, I live among the creatures of the night
I haven't got the will to try and fight
Against a new tomorrow, so I guess I'll just believe it
That tomorrow never knows

A safe night, I'm living in the forest of a dream
I know the night is not as it would seem
I must believe in something, so I'll make myself believe it
That this night will never go

Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh-oh-oh, oh-oh-oh
You take my self, you take my self control
You take my self, you take my self control
You take my self, you take my self control... 

Give a Little Bit

I’m finding myself really weepy lately.  It doesn’t take much to get me teary eyed these days. I can say pretty confidently that it’s not from being sad or depressed, but more often than not , it's just being really appreciative, grateful, or that I perhaps I'm just feeling things I wouldn’t under ‘normal’ circumstances. In picking out a song for these little missives, I can usually tell if it’s the right one as I get that familiar choked up feeling and so begins my inspiration for the day, but not always. My inspiration, today, is not so much the song, although it fits. It’s the video that accompanied it. I saw it posted to Facebook a few months ago and it got me then as much as it does now. It’s the message that was paired with the song that hit home and it’s one of the few times an advertisement got it right.

The song itself is Supertramp’s Give a Little Bit (the link at the left is to a video for the whole song). The video is Coke’s Super Bowl ad and it captures the best in us in a very short time … as captured by security cameras.

The thing that brought it to mind today was a conversation I had with my two sons yesterday.  My oldest son had a birthday a couple of weeks ago.  He turned 23 and is coming of age in a way that brought back a lot of memories for me as we had a really good conversation over the phone on the day after he celebrated his birthday. 

This is the day I brought my son home.

He has arranged to come out to Seattle to be my official caregiver while I’m undergoing my bone marrow transplant.  He’ll be seeing the best and worst of me and we’ll be having more of those good conversations, I’m sure.  We’ll also be making plans to do some wild and crazy things before he settles down (do any of us really ever settle down? Well, some of don't!) He’s not just giving a little bit; he’s really giving a lot to be with me during this time. That’s who he has always been. He is the quintessential strong and silent type, although when he gets talking, it’s debatable...and he's generous to a fault!


He's now 6'-3" and running (half marathon
here). You'd never know he has worked
through open heart surgery ... twice!

One of the things he talked about was spending time with his younger brother who is finishing up his first year of college. Both boys…uh…young men are asking a lot of questions and we’ve found a way for the two to be together: they can both come to Seattle. Yesterday afternoon, we were all able to get on the phone at the same time and talk through the details and it looks like it’s a go. So, it’ll be all the boys together this summer during my treatment and convalescence and this way, everything won't fall on to my oldest son even though there will be others coming over the course of the summer. We’ll all be giving a little bit to each other as we’re all navigating the next stage of our lives.  We all need what each other has and it proves that no matter how big, old, or tall the cubs get, the papa bear will always need to do papa bear things … and I’m really looking forward to having my cubs around … although admittedly the circumstances could be better!



My two sons last summer.

I had breakfast with my dad this morning, the first time I have eaten out since my adventure in toxic chemical goodness began nearly two months ago. In his way, he was giving his ‘little bit’ to me and I commented to him again how so many people had given their little bit to make this ordeal less intense. If little things bring me to tears of gratitude and joy, you can imagine how often the waterworks have been active these past couple of months with so many doing their own little bit,.

When I think about it, this really isn’t a stop-and-smell-the-roses sort of appreciation. The roses have always been there and I really am one to take in those kinds of things, but rather this is a stop-and-appreciate-the-thorns thing. And you can’t overlook the petals that have fallen to the ground or the earth itself and the bees and … and so on. It’s an appreciation of all the little bits.

Another of those little bits happened during my blood transfusion on Wednesday. I noticed that when the nurse that attended me arrived, he was wearing the same cycling jacket as I do, so we talked bicycles most of the day and he told me where I could ride as well as recommending a bike shop he trusted. He's more of a triathlete than a cyclist, but since he qualified for the Boston marathon, he's clearly an awesome athlete and he may just be running the big marathon on Monday. If I don’t see him when I go in for my last stab-me-in-the-back chemo, I’ll know why. A few of the medical staff are veterans, but not many.  He happened to be one, so we could swap stories about our time on active duty as well. On the down side, he was unable to find a vein that hadn’t been reduced to nothing as a result of my chemo. He and one other nurse turned me into a voodoo doll, so my arms are looking getting track marks and bruised as a result (yeah! fun!). I can be appreciative for the folks in the lab who seem to find the elusive place to draw blood and do it amazingly without hurting me.  I can’t figure out how that needle goes in and I don’t feel pain, but the lab folks do it. Whoda thunk the prick of a needle would be something to be grateful for? Believe it!

One last little bit: my new friend with the fun t-shirts was an inpatient this week while I was getting my transfusion and we got to swap more stories and chat since I was the inpatient last time and he stopped by my room. I didn’t recognize him at first as he was wearing the hospital jammies instead of his jeans with the oversized belt buckle and the obnoxious t-shirt that makes you chuckle. But once he spoke, I knew it was him and we were already on the way to keeping each other smiling. 

I share a few of the mundane little things with you from my week because every little thing you do makes a difference to someone else – for good or ill. An encouraging word, a hug, a phone call, a joke, a smile to a stranger, doing your job well, whatever – all of these things make a difference even if you don’t see the end result. Can I encourage you to be that person for the one who needs a smile? I can tell you first-hand that it means the world...and if they need it like I have, it just may make them a little teary-eyed with joy.

Be well, stay strong, and much love to you all…and make someone else smile today! J