Not Just An Academic Exercise

There are only so many ways to say, “Cancer Sucks,” but it doesn’t change the facts about the illness and it doesn’t change how I got mine and it doesn't change who else will find themselves dealing with all the less-than-fun aspects of “The Emperor of All Maladies.” With some exceptions, it just seems so random. Having been on the cancer battle lines most of the year, there’s just no getting around it and it seems like everywhere I turn, people I know are battling with me not simply as someone who is encouraging me in my own fight, but as someone who now has entered the fray with their own cancer. It's kinda like all of a sudden noticing the model care you just bought when before they were all invisible.

I gotta say though for me, it’s a truly helpless feeling to witness someone’s processing that they have cancer, but all I can do is be candid in offering what I have gone through and be a source of encouragement, hope, and empathy to others who are now in the fight…and that’s provided I’ve been invited to be part of that discussion.

 

The aspect of cancer I haven’t been able to move past is the obvious – cancer kills. Academically, in my mind, on paper, I get it. Naturally, that’s one of the first places I went when I made the connection that leukemia is a blood cancer. What were the statistics that I would survive? Wasn’t it enough that the hem/onc doctor in front of me pronounced a death sentence on me of 90 days? I just couldn’t wrap my head around it all. Shoot, I didn’t even know the questions to ask. My prognosis was pretty positive with a bone marrow transplant, but even with that, I almost died twice in the space of a week. And yes, I still haven’t wrapped my head around that either. I just haven’t quite come to terms with it except that’s what people have told me. It has been a purely academic exercise, yet it really happened.

Then there are those who really, no-kidding, don’t make it.

Twice this week, I’m facing that situation and I’m truly at a loss for words, but I can’t avoid it. You see, walking into the MTU, it’s not unlike being a big family.  The caregivers and the patients alike are all part of something bigger than ourselves and we have a good idea of how everyone is doing. We can’t help but get emotionally attached to each other. People knew more about my situation than I did when I emerged from the MICU and eventually into outpatient status. Many of us stay at the same extended stay hotel and we swap stories and ask after one another. Earlier this week, I met up with a caregiver outside the laundry room who was commenting how good I looked. I asked after her husband and she was rather candid in that he wasn’t doing so well as he was out of remission and rather disappointed because of where that put him in the transplant process. Somewhere inside of him, he knew there was more to the picture and even said that he might die. She, rather matter-of-factly acknowledged as much that it was a possibility, not knowing that the next day, she would be getting the news that he, in fact, was no longer a good candidate for a transplant, which essentially translated into him being now a terminal patient with just a couple of months left on this blue ball. I was just outside the MTU moments after she received the news.

What do you say?

I sure don’t know…except to go with my gut and simply be honest. It’s a tough thing to face death, but I have to say that now having done exactly that, it gives me a sense of peace, but clearly others aren't where I am. I can't impart how I'm feeling to someone else and things can change, too. Shocking, end-of-life news is something everyone processes differently. I’ve said it many times and I’ll say it again, I have a lot left to do on this earth before I meet my demise and I honestly hope I get to do it all. But just like the caregiver I refer to above, the possibility that I may die before then is a possibility.

But I don’t know. I really don’t, so I asked a couple of nurses on the MTU how they've handled the situation over their tenures. Both have been working in transplant for years and it wasn’t all that long ago that the kinds of conditions that call for bone marrow transplants weren’t as successful as they are today. Advancements in pharmaceuticals have saved countless lives, but the nurses had to be the one to get families together to say their good-byes many times as the doctors either couldn't or wouldn't. In their experience, it again came down to being honest with the patient. They said that more often than not that the patient already knew things were pretty bad before it came to the point of ‘the talk’ and getting the family to a point of releasing their loved one with their blessing to move on.

Death and dying aren’t topics that people enjoy talking about, but evading them can be insensitive at best. Having come close to dying, myself, I can appreciate how important it is to make final arrangements so that those who are left grieving don’t have to second guess me, so yeah, I think it’s vitally important that people know what I think both in the legal and personal constructs. It’s not a morbid topic, unless of course, I were to dwell on the topic. With the experiences I’ve had this past week with incurable forms of cancer striking people I know as well as a couple of others where others are now starting their dance with the big “C,” I’m scratching my bald chemo-affected head a bit more than usual. Suffice it to say, there just seems to be no element of fair play, but then again, when did anyone say that cancer ever plays fair?

You can imagine that I’m a bit bummed about watching a member of our MTU family head home to live out the remaining few months he has…but at least he has a couple of months left. It’s definitely not a glass-half-full moment, but there is something in that glass. I’m bummed that I’m hearing from people I know are finding they are now fighting cancer like I am. But I’m still filled with gratitude that I’m making it and that there’s hope ahead and that there’s always some modicum of hope for those just finding out they’re now enlisted in a battle they didn’t choose either. I still don’t know what to say to the dying except the honest truth from my own heart because it really isn’t some academic exercise.

It’s very, very real.

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

Music for the day from Craig David – Rise and Fall

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

I always said that I was gonna make it,
Now it's plain for everyone to see,
But this game I'm in don't take no prisoners,
Just casualties,

I know that everything is gonna change,
Even the friends I knew before me go,
But this dream is the life I've been searching for,
Started believing that I was the greatest,

My life was never gonna be the same,
Cause with the money came a different status,
That's when things change,
Now I'm too concerned with all the things I own,
Blinded by all the pretty girls I see,
I'm beginning to lose my integrity

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

I never used to be a troublemaker,
Now I don't even wanna please the fans,
No autographs,
No interviews,
No pictures,
And less demands,
Given advice that was clearly wrong,
The type that seems to make me feel so right,
But some things you may find can take over your life,
Burnt all my bridges now I've run out of places,
And there's nowhere left for me to turn,
Been caught in compromising situations,
I should have learnt,
From all those times I didn't walk away,
When I knew that it was best to go,
Is it too late to show you the shape of my heart,

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

Now I know,
I made mistakes,
Think I don't care,
But you don't realize what this means to me,
So let me have,
Just one more chance,
I'm not the man I used to be,
Used to be

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

As a post script, here are some thoughts on what to say to someone who is dying. It’s not the end-all, but it’s a good start.

A Day in the Life

When I got my diagnosis, I really couldn’t wrap my head around what leukemia was. I had no idea that it was a blood cancer, and I certainly had no idea that treating this bastard was such a long-term affair.  There have been of myriad of complicated, interrelated details that boggle the imagination, literally hundreds of medical and support staff rotating from one organization (within the VA system and other institutions), thousands of shiny, jagged pills, IVs, syringes, scans, probes, swabs, tests, biopsies, consults, and so much more. How does anyone keep track of it all? The simple answer is not that I have to rise to the occasion, but rather work together with them all and my caregiving team to make it work.  No one can do this solo. Just ain’t no way, my friend!

I thought what I’d do today is give you a guided tour of what a routine day is like to give you an idea of all the people involved as well as some context of what life is like. It’s very much like an inpatient day except that I get to leave when the doctors give me the OK that I’m still healthy and self-sufficient to be an outpatient at the end of each day. It’s obviously a big bonus for the little things like choosing what kind of food you want to eat, sleeping in a bed that is more comfortable and not getting awakened or interrupted by someone wanting to poke, prod, or otherwise molest you at any given hour! Yeah, big bonus there. Remember, I have a great soft spot for nurses, but checking my vitals at 1:00 a.m. when I’m actually sleeping? Ah, yeah, those were the days…and hopefully not to be repeated any time soon.

The bone marrow transplant process is nothing short of a chemical miracle in my mind. It’s hard for me to really grasp the significance of this little bag of someone else’s stem cells being infused into my arm being fruitful and multiplying into enough of a life-saving force to engraft to my own body and be formidable enough to fight off any remaining leukemia that might be in my system after that lovely toxic chemical goodness has done its good and perfect work on decimating my own immune system…yet it is and it has! It is a truly drastic and extreme life-saving measure and as I was told before I got here, I would be taken to death’s door and brought back. Once again, I was quite literally there and I’m back and working through the process toward restoration and healing. 

The transplant process here has a rough timeline that takes about 100 days, some more, some less depending on how one’s body reacts to all the pharmacopeia and of course the transplant itself – and there is a whole mess of it every day to keep on top of. Day 1 is actually the day one receives the stem cells even though the treatment begins before getting them.  There are variations on the transplant depending on who provides the stem cells. An “autologous” transplant, for example is where the patient provides his or her own stem cells for later use while those like me who needed a donor receive an “allogeneic” transplant. Then there are two subsets of each of these – a mini or a full myeloablative transplant. I had “the full monty” as people were calling it because of my younger age and ability to withstand the more arduous process. Trust me, it was indeed an arse-kicker, but there should be fewer complications down the line and I skirted the one key part of treatment that I just couldn’t reconcile: total body irradiation.
 
So, 42 days of inpatient fun later, I was discharged to be on outpatient treatment. What, you may ask, do I do during these days post-transplant at the hospital each day? Let’s begin with my virtual tour from the fabulous Marriott Towneplace Suites in Renton, WA! The VA puts my sons and me up in a two-bedroom suite with a small kitchenette. It’s a comfortable space and the people here have taken good care of us, but you all know we’d rather be home…not a bad home away from home considering the circumstances.



I have always been squeamish about self-injections, but thanks to the high-dose steroids, my blood sugar is off the charts. So, four times a day, I have to check my blood sugar and inject myself on a sliding scale of insulin just like someone with diabetes.  My stomach isn't so pretty right now and for all the effort I have put in to trying to flatten my gut out, I'm actually rather grateful to have a bit of belly fat right now!  This is a temporary thing, thankfully, and as the steroids are tapering off, this will go away as well.  For the time, it's part of my daily regimen.

 

My day starts with taking care of one of the side effects of the high dose of steroids I’ve been prescribed – monitoring and correcting for high blood sugar. And no, dear ones, they’re not that kind of steroids.  If anything, they do the exact opposite and are eating away my muscle so I have to be mindful to be active. Someone had posted on my Facebook page that with all the weight I was losing and the steroids, I'd be ripped when I came back.  I can only wish.  But, in my case, just like a diabetic, I get to inject myself with insulin four times a day as the steroids throw my blood sugar through the roof. Before treatment, my blood glucose levels were absolutely normal. For now, I get to poke my fingers to test for blood sugar levels and then based on how high the numbers are inject myself with the appropriate amount of insulin before each meal and before bed. Lovely way to start the day, huh? I also check my blood pressure and temperature and I’m eating quite a bit differently than I might have otherwise. This is truly an education in nutrition and self-control as well as the medical side of things as we go along.

 

Yup...it's a typical Seattle morning - rainy and / or foggy! Our commute route takes us past one of the many, many, many Starbuck's shops. Austin, my chauffeur, knows them all and not so surprisingly, they know him!

 

 

 

 From the front of the Seattle VA Hospital - As much time as I spend here, it feels like home away from home...except that it isn't. It's actually quite the sprawling complex behind this façade.
 

After a quick shower, I run over to our hotel continental breakfast and grab a quick bite and take about 20 different pills for various things including liver, kidney, electrolyte, and immuno-suppressant functions. Anti-rejection drugs come along later in the day after my blood draw at the hospital.

Off to the hospital in the characteristic rain and we are typically on the surface route instead of the Interstate. The traffic going toward the city isn’t unlike my memories of SoCal, but not quite as many lanes to accommodate all the many cars.  I won’t take the time to criticize Seattle drivers, but I will say they’re a lot nicer face-to-face. Let’s leave it at that.


At the hospital, it’s back to the Bone Marrow Transplant Unit where it feels like a family and Cheers where everybody knows your name. There, we take our turns in the outpatient room, getting our routine blood draws and the IVs that are on our treatment plan. In the picture here, I’m getting my PICC line dressing changed. That’s a weekly occurrence, but it’s painless and it keeps me from getting stuck with a regular IV needle every time I come in, so while it really hurt going in, it has saved me a huge amount of discomfort over the months in getting blood draws and IVs otherwise.  Other patients get something called a Hickman port which is essentially the same thing I have except it is installed over the chest and has three “lumens” or ports instead of my two. Since I was an allogeneic patient, I didn’t need the Hickman. The amount of time we spend in the outpatient room can vary on the number of different treatments we need during the day. For me, it’s routinely two hour-long IVs, the blood draw, and occasionally, I get something else. By the time I’m done, it’s about noon.  The lab turns around the blood chemistry results pretty quickly and we’ve all been taught what to look for.



This is the Bone Marrow Transplant Unit where it all happens - 4th floor. Behind the doors to the left is the ultra-sterile environment where I lived in a fishbowl for 7 weeks (less my two unplanned excursions to the MICU) and where I go each day for my outpatient visits.



There are four of these comfy chairs that recline while we get our IVs (could be any number of things. Some patients get chemo, but since I had a full myeloablative transplant, I'm very much finished with chemo (the crowd roars ... or at least I do!) typically get a daily antibiotic and antifungal. Here, my nurse is doing a weekly PICC line dressing change.

During this time as well, and more to the point of why we come in each day is to see the attending physician and his coterie to again, make sure I’m on the up-and-up and moving along according to plan. These visits are essentially identical to ‘rounds’ that these same doctors do if I were inpatient. He has with him, the most current hem/onc fellow, a staff pharmacist, the outpatient nurse, nutritionist, and a few others that don’t identify themselves.  They pepper me with questions on how I’m doing, check my mouth for sores, listen to my lungs, check for edema in my legs, and make some small talk. At this point, it feels very cordial, but it’s not unusual after these sessions to get a call to adjust medication by a little bit or to get additional appointments to ensure peripheral issues aren’t surfacing. They also interface with other departments to ensure everyone is on the same page. It’s actually pretty amazing all that happens between everyone.

At some point during this process, I get “discharged” to go home again. There’s a collective sigh and exodus by all of us outpatients when it happens as it is a legal sort of thing. If we leave early, it’s essentially something called “AMA” (against medical advice) which is obviously rather serious for a cancer patient under active treatment and everyone gets their hand slapped rather hard. It’s not unusual for us to be held back awaiting medication changes, so we’ve waited several hours. Hey, I’m not sleeping there, so I’m quite all right with it. I try to see others while I’m there to make the best use of our time.  They also have a cantina in the basement that makes some pretty good sandwiches for cheap. My son and I have found them to be excellent!

If we can get back on the road by 3:00, we can make it back to our hotel room in decent time without the traffic and will find some way to get out and exercise, even if it’s to walk the mall. Seattle really is a rainy place and I’m cognizant of the sunlight restrictions, so the mall is a good place to get some walking in, at least during the week days.  My immune system is such that I need to avoid large crowds, so the weekend when the mall is crowded can be problematic for me.

Evenings are spent with my two sons, although we often tend to be three bachelors in the same room. We are all electronically engaged, but somehow in the moment together. I’ve been trying to make sure we do *something* together each night while I’m connected to my evening IV. We have a completely stocked nurse’s station that has occupied the kitchen table in our apartment as you can see in the photo, replete with three separate IV pumps, syringes for insulin, chemo-safe gloves, saline flush syringes, and a panoply of meds to keep my monster box of pills fully stocked. The fun just never ends…but then again, that’s why we’re here.

Behold the Nurse's Station replete with IV pumps, monster pill box, chemo safe gloves, syringes for all occasions, alcohol wipes, and a stack of documentation to tell us every possible side effect there is on all he meds.
 

Somewhere along the way, I start to crash, so I give myself my final injection for the evening and get into bed, only to sleep for about 3 hours at which time I find myself reading for another few hours and try one more time to get a bit of a nap in before starting over. 

It’s a highly-regimented day, so you can imagine how a ‘normal’ day will feel…mostly because you’re living it. We’re about halfway through the 100-day cycle and hope that when December 2 rolls around that the car is headed eastward on dry roads back to Salt Lake with some happy guys singing campfire songs (or at least along to the stereo!), so think happy thoughts about my treatment that it continues to go well and without any hitches along the way. We’ve had enough to last a lifetime!
So for now, one day at a time…hope you enjoyed my abbreviated (even though this was a bit long today) virtual tour of what I’m doing these days.

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

Music for today – Home Life by John Mayer

I think I'm gonna stay home
Have myself a home life
Sitting in the slow-mo
And listening to the daylight
I am not a nomad
I am not a rocket man
I was born a house cat
By the slight of my mother's hand

I think I'm gonna stay home

I want to live in the center of a circle
I want to live on the side of a square
I used to be in my M-Z now
You'll never find me cause my name isn't there

Home life
Been holding out for a home life
My whole life

I want to see the end game
I want to learn her last name
Finish on a Friday
And sit in traffic on the highway
See, I refuse to believe
That my life's gonna be
Just some string of incompletes
Never to lead me to anything remotely close to home life

Been holding out for a home life
My whole life

I can tell you this much
I will marry just once
And if it doesn't work out
Give her half of my stuff
It's fine with me
We said eternity
And I will go to my grave
With the life that I gave
Not just some melody line
On a radio wave
It dissipates
And soon evaporates
But home life doesn't change

I want to live in the center of a circle
I want to live on the side of a square
I'd love to walk to where we can both talk but
I've got to leave you cause my ride is here

Home life
You keep the home life
You take the home life
I'll come back for the home life
I promise

 

Walkin’ the Green Mile

I ain’ committed no crime, yet I’m on death row in ‘cell #6,’ waitin’ ta walk the big ol’green mile. I’ve been given six lethal infusions that are systematically killing my capability to produce blood. Without intervention, I will surely die. This is by design of course, but it is nonetheless, very much factual. Let me pause while I swallow the very big lump in my throat. This latest infusion packs a pretty big wallop. I’m feeling a bit lightheaded, my ears are ringing above authorized levels, and I have this funny sensation in my sinuses. I have developed rashes in the crooks of my elbows and knees and I had a rather bad day of “shake ‘n bake” (chills and fever) and I don’t feel well enough to eat without throwing it up again.

Tomorrow, things change forever. Or you so might think.            

I’ve already begun an infusion of an anti-rejection drug called Tacrilimus so that at some point tomorrow, I will receive stem cells from Hans, my mystery donor. Those cells will immediately go to the ‘iCells’ and become the ‘0’ required type I need.

The day those cells that look little more than ketchup push into my veins, many consider my new “birthday.” So, while I will have walked that green mile, I will also have found a new life after considerable struggle. My new ‘birthday’ turned out to be pretty nonchalant, but it presented a new chance at living. It was a very quiet 10-15 minutes, yet powerful in significance.

So, why ponder on the details of a procedure that is considerably uncomfortable and one that has mortality figures attached to it? Because life, at the risk of coming across as a wee bit glib, is important and those of us who have threatening situations should recognize that in truly the starkest of terms. It sucks, it hurts, and there’s no fun involved at all, but I will survive. I’m profoundly grateful to you all for your best wishes, your kind smiles, gifts to my family, and for all the small details that (I guarantee you I don’t miss attention!). In truth, I didn’t realize that anything I did had anything to do with those of you who had offered up your own well wishes until I had emerged from my own ‘hovel’ of sorts. After all, this all seemed liked it was most assuredly, all about me! Even though that was true to some extent, I was about to learn that wasn’t quite true.

There are a lot of people at different stages of their treatment shuffling through the MTU each morning, but only about half a dozen inpatient rooms as most of the transplant procedure actually takes place outside the hospital. It makes things overall easy to keep track of everyone. Once I went inpatient for my actual transplant, I lost track of a lot of my compadrés going through this loveliness with me. Much like my first hospitalization, I lost my strength and just felt like watching the birds when they happened to cross my path. Still, part of my daily regimen, is to take a walk. On returning back, I met up with a wife of of a guy going through an “auto [providing one own’s stem cells]. The two of them had just been home for a couple of weeks fishing and had recently returned back to the MTU to finish the deal. Each regimen has its plusses and minuses, inevitably leaving you with the “I couldn’t do that!” expression on your face. In this case, it was full body irradiation.  That was the hurdle I struggled with, yet for their relationship, that’s what he would do for her.

I think that’s when it struck me. It isn’t all about me. In her very simple, pleading voice, she explained to me about her husband sleeping in one of the adjoining suite of rooms. She told me, “I can only imagine what he’s going through, but it’s the least I’d do for him. That’s what love does for one another. So, at that little alcove at the end of the hallway, I saw it wasn’t about a single person. Going through the extreme sacrifice of cancer treatment is as much for others as it is for oneself.



The day before leaving for Seattle, we all gathered for a BBQ in Park City. A large version of this picture hangs at the foot of my bed at the hospital, reminding me that I have a lot of people I am living for and a lot of people who love me. This is only a fraction of the who' fam damily!

We walked each other back to the MTU where her husband was asleep and I had some new things to think about. The day before I headed out from Utah for this grand adventure of healing, this pic was snapped and deemed “Team Todd 2013.” It has most of my local family and it was blown up to poster size so it can look down on me during some rather lonely nights. I am without a spouse and my children live on the other side of the country, so the poster is significant. My children and indeed those smiling down on me from the solitude of Team Todd 2013 are those whom I have to garner the strength to keep living and fighting for. It is indeed not just about me. Happy new birthday, sure…but it means so much more, especially to those who walk with me. The only crime I will have committed will be the one of supreme selfishness to ignore this birthday.

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

Today's music:  Magia de Amore by Vitorio Grigolo

 

Te recorro lentamente por la piel
Te acaricio tiernamente las mejillas
Y mis manos se enloquecen al llegar
Lentas en tierras perdidas
Suaves colinas dormidas
Y mi boca que no deja de besar
Y se pierde en las arenas atrevidas
Y tu playa se confunde con mi mar
Anchas, ondas compartidas
Sabias, gaviotas amigas
Magia de amor
Juego inocente
Loca ilusiòn que escapò entre la gente
Y que vuelve a mi lado
Sin otra intenciòn que vivir
Sin pedir un por qué
Ni olvidar el perdòn
Me fascina tu manera de querer
Y me entrego a tus malicias decididas
Me abandono a la conquista de tus pies
Bellas palomas prohibidas
Fiesta de miel escondida
Magia de amor
Juego inocente
Loca ilusiòn que escapò entre la gente
Y que vuelve a mi lado
Sin otra intenciòn que vivir
Sin pedir un por qué
Ni olvidar el perdòn
Que vuelve a mi lado
Sin otra intenciòn que vivir
Ni olvidar el perdòn
Sin pedir un por qué
Ni olvidar el perdòn

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.

 

Point of No Return

Up until my meeting with one of the doctors at the Seattle VA Hospital yesterday, cancer was pretty much an academic exercise for me. Obviously, I took it serious enough to subject myself to some pretty nasty and less-than-pleasant procedures and pharmacological fun, but the severity of something that could actually kill me in the space of a few months? Nah, I never get sick. And I mean never, much to the annoyance of those around me. I didn’t need medication with the exception of an aspirin on rare occasion and until last year, I had never set foot inside a hospital except to visit or take one of my boys to the ER for a trampoline mishap (side note:  if it looks too fun to be safe, it probably is. Both boys got broken legs from a trampoline).

That all changed yesterday.



When the first sentence has the words you, diagnosed, fatal, the rest of it ain't gonna be an easy read. Breathe deep, grasshoppa.

The good doctor reiterated the protocol for the bone marrow transplant and gave me more paperwork to review and sign. This is in addition to the stack of papers I signed on Monday, which apparently only consented for participation in the Graft Versus Host (GVH) drug they’re developing and another academic study that is pretty much statistical. I feel like I’m at the closing on a house with the amount of small print I’m reading. There’s apparently a board that reviews the language to make sure it’s not too terribly academic, but you can’t dumb down words like cyclophosphamide. Much to my amazement, my spell check recognizes that!  Go figure.

He gave me a sheet that has the road map of my transplant for the time I’ll be inpatient.  If everything works according to plan, I’ll be coming in Tuesday for some premed dose of Phentoin, an anti-seizure drug. Seizure is a side effect of the type of chemo I’ll be taking. I’ll also be getting Allopurinol which is usually administered to treat gout, but in this case, it also protects my kidneys from the chemo. Finally, I’ll be getting a sulfamethoxazole-trimethoprim antibiotic cocktail. My rule, as of late, has been that if I can’t pronounce an ingredient on the back of a food label, I shouldn’t be eating it, but I’m getting good at these drug names. I guess I need to refine the rule a bit. On Wednesday, I will be admitted as an inpatient for more toxic chemical goodness that will officially be the point of no return. If I were to stop treatment at this stage, it would be fatal for me. If something were to happen to the donor at this point, I would die without another donor, period.

August 14 is Transplant minus 7 days. T-7 will be the beginning of four days of Busulfan and then on T-3 days, I start another chemo drug called Cyclophosphamide and the GVH test drug for a couple of days and I finish up on antibiotics and anti-seizure meds.

Then I get a day of rest.

All during this time my blood production capabilities are essentially being destroyed by the chemo, so I’ll be getting transfusions of red blood cells and platelets I will have absolutely no immune system and I will be feeling very, very ill. The drugs will attack all the fast growing cells which will include the obvious places like my hair, but it also gets my mucous lining throughout my GI track and that will make it all but impossible to eat, so I can anticipate getting my Nutri-fun through my PICC line. I’ve heard that people often can taste things when getting infused and I find myself often smelling something when my line is flushed with saline. Let me just say I’m putting in my order for crab cakes Benedict for breakfast and perhaps a filet mignon Oskar for dinner.  I figure if I’m going to feel like crap, my food should make up for it, right? A guy can dream a bit, right?  I’ll also get one of those insta-morphine buttons to stave off the really bad stuff.

Following the transplant infusion, I’ll be getting Methotrexate, another kind of chemo as well as an anti-fungal Voriconazole, and an anti-viral Acyclovir. During the next couple of weeks, the transplant cells will start to engraft into my marrow and at some point my new immune system kicks in. The other thing that the new stem cells do, as it was described to me, is go to the injury first. In this case, they go to the damaged mucous membranes in my GI track and I start to actually feel better and can eat again. Following closely behind that, the stem cells wake up in my marrow and the white blood cells that fight infection (neutrophils) start coming on line and doing their job. About 11-14 days after the transplant, I get discharged and begin the recovery process.

I’ll be going in for close monitoring regularly until the GVH is under control, I’ve recovered sufficiently, and am strong enough to have my follow-up care managed by the VA in Salt Lake City. GVH affects nearly every transplant patient and even though I may be getting a drug to stave that off, it will be something I have to manage carefully for a few years out and be cognizant of for the rest of my life.

Having that rather graphic picture painted for me, complete with real graphs on the white board, was informative, but a bit tough to take in, considering the details were painted out rather vividly for me including all the side effects, which included the words fatal, catastrophic, and death more than a few times. 

Reading these things in my consent packet was even more difficult. It’s not like I didn’t know that kind of thing was possible, but seeing it in black and white and me signing this stack of papers was hard. It made that academic exercise something real and in a few days it will be tangible. It will be happening. It will be the point of no return.

And even if there is no turning back and it’s going to be a taste of hell, it isn’t Dante’s Inferno. I don’t see a sign that says, “Abandon all hope, ye who enter here.” If anything, seeing such finality in signing these forms, I found myself mildly annoyed if not a bit in shock.  It’s tough to take in, it’s scary, and dammit, I have too much yet to do to be dealing with the business of dying.

So, screw the statistics and let’s beat this. I’m committed…no turning back. You with me?

 

I had tossed a few frogskins to a friend of mine from my writers' group in Minnesota who is participating in the Relay for Life for the American Cancer Society. I didn't give much thought to it afterward, but as the event was today, she did this for me. I've always been the guy raising money for others...being on the other side of the coin is humbling, but I so appreciate her thoughtfulness. Thanks, Malyssa!

 

Be well, please be strong for me, and again, much love to you all.

Today’s music is of course from Kansas, Point of Know Return (not a typo)

I heard the men saying something
The captains tell they pay you well
And they say they need sailing men to
Show the way, and leave today
Was it you that said, "How long, how long?"

They say the sea turns so dark that
You know it's time, you see the sign
They say the point demons guard is
An ocean grave, for all the brave,
Was it you that said, "How long, how long,
How long to the point of know return?"

Your father, he said he needs you
Your mother, she says she loves you
Your brothers, they echo your words:
"How far to the point of know return?"
"Well, how long?"

Today I found a message floating
In the sea from you to me
It said that when you could see it
You cried with fear, the Point was near
Was it you that said, "How long, how long
To the Point of Know Return?" 

Every Day is a Bonus

I’ve met a lot of people with cancer since my own induction into the NIHF (Nasty Illness Hall of Fame).  It’s like suddenly noticing that everyone is driving the same model of car you just bought. Sometimes you spot other survivors because of the awesome hairdo (i.e. lack thereof) or the PICC / port. Sometimes there’s just that vibe and you find yourself striking up a conversation with a perfect stranger as if they’re old friends. Those conversations aren’t at all uncommon and typically the people leave you feeling buoyed and encouraged from their positive outlook. After all, we’re all survivors and it takes a certain je ne sais quoi to keep breathing when the chemicals may be messing with your lungs.
 

 

Sometimes that positive attitude isn’t enough and the cancer takes a few fellow soldiers out. I’ve met two such people who were processing the news that their bodies weren’t responding to treatment any longer and I was on the other side of a curtain when a social worker was discussing palliative care options with someone who had just received that news. Just like the cancer diagnosis itself, just hearing the news of someone else’s impending demise stops you in your tracks.  It’s not so much a ‘there but for the grace of God go I’ sort of thing as much as it is reality when you’re battling cancer at all.  I don’t feel sick, but I know if I do nothing, I’ll be having that same conversation with someone with a practiced sad but efficient countenance. My doctor said as much on Monday. It’s powerfully sobering…and just like a good alcohol buzz, coffee doesn’t make this go away either, but it is, to be sure, the ultimate buzz kill!

I started writing this blog for two main reasons. Naturally, it’s a way of ‘controlling the message’ and letting everyone know what’s going on with a rather long-term, complicated condition I’m working through. The details are many and easily misinterpreted, so I try to use this forum to keep everyone who cares in the loop at the same time instead of saying the same thing over and again. That really gets emotionally taxing. But really, I write for me. Writing has always been a catharsis, a way of expressing how I feel and as a way of preserving some modicum of sanity in a situation where I feel like I’m held hostage to a situation that I did nothing to bring on and can do nothing to ameliorate. Admittedly, in the process of putting information out there, I tend to be a bit self-deprecating and flippant, but underneath it all, I can be one scared puppy on occasion.

Now, I wouldn’t try to start reading between the lines and wondering if I’m OK because that just opens up a new can of worms and if you’ve ever played with worms, you know how messy that can get! So, let me spare you the psychoanalysis and just come out and say that I’m OK. I will also say that while I accepted academically, a long time ago that I have cancer and am going to fight this son-of-a-bitch until one of us is the decisive victor, I struggle with the reality of it all. I have to trust a panel of test results that unequivocally, pathologically, and painfully say that I have acute myeloid leukemia even though I really have had no symptoms to speak of. Yet the facts point to a certain, untimely demise had I continued to live as if nothing were wrong. Hey, denial will only get you so far. Damn! So, I try to face it head on…but how do you process something you couldn’t see, feel, taste, hear, or smell? Highly experienced doctors and nurses all told me that the amount of blast cells in my marrow should have debilitated me, yet I was leading a very full life: working a job I really like, skiing black diamond slopes and hitting the gym every night. It didn’t make sense. And while I still can’t reconcile it at all, I’m not letting the lack of tangible evidence dictate my course. After all, my attending physician told me that my latest marrow biopsy was clear of cancer, but had something in it that indicated that left untreated, the leukemia would return and it would possibly be unresponsive to additional rounds of chemo.

The transplant is something I need in order to survive.

It’s easy to be a bit glib about being a survivor when there isn’t any discomfort, when there isn’t a tumor to be surgically excised or radiated, but it doesn’t change one iota the fact that without definitive, aggressive treatment, survival becomes increasingly unlikely. During the wee hours of the night, during my early hours in the morning before I’m around anyone, during the time I’m exercising, and during my conversations with other patients in the ward, I find myself pondering my mortality and profoundly grateful for each additional day. As my grandpa used to say, “Each day is a bonus.” He obviously said that as a way of recognizing his own morality and that his life was coming to a close. From everything I’ve been told and from everyone I’ve spoken with, it’s rather unlikely that my time is drawing nigh, as it were, but I still find myself with that same attitude: whether I have a few months or a few decades remaining in my life, every day is a bonus.

 

I don’t know when it was over the course of the past six months since my diagnosis that I found some peace with my mortality, with the possibility that I might not survive, but I did. There’s no fear or regret, but certainly a desire for more time to make a difference somewhere, somehow, in the lives of someone else perhaps – lots of someone elses. I’m sure that’s why I enjoy the charity bicycle ride events so much. But if, on the outside chance, that’s doesn’t happen, I’ll know I lived a wonderful and rich life. I’ve realized my childhood dream of being a pilot, I saw my children come into their own adulthood, and I knew what it was to “love and be loved in return.” I could list off a number of accomplishments, places I’ve seen, fun and off-the-wall things I got to do, but in the end, what matters most is the relationships I’ve had over the course of my life. Some of them, I got right and others were, shall we say, teachable moments, for this incorrigible big kid.

And maybe it’s now that I face death that I can say with some degree of certainty that I can live even more fully, both in the moment and out a few years. I’ll still look forward to learning from my mistakes, but the fact that I’m making them will reinforce that I’m alive and moving forward. No, I’m far from ready to be tossing in the towel, but I do want to make good on a vow I made to myself when I walked through my last big crisis. As I tried to reinvent myself, I came to the unavoidable conclusion that the woulda coulda shoulda game gets me nowhere but an invitation to other people’s pity parties and I tell you, I’m not going nor am I hosting one for myself. I vowed that I would live my life without regrets, that I would tell those I loved how I felt about them and that I would be happy in spite of my circumstances. I think I’ve done pretty well with that resolution and it has stood me well. That is, by the way, one of the reasons I end my blog posts the way I do. Regardless of how long I live, I want the last words you hear from me to be those of well wishes and kindness.

I don’t need to tell you that this story isn’t over. I have learned a lot of painful life lessons even in the past five months and those lessons will be refined a bit more over the immediate future as I walk through the proverbial valley of the shadow of death. I’ll get to see some pain and suffering, some tears, and some days that will just plain suck just because, but there are things left for me to do. I don’t have the faintest idea what they are, but I know I’m going to be busy for years to come.

I hope you’ll continue to stay alongside me for the ride. It’s going to be exciting, a little awkward and hard to watch at times, but exciting nonetheless. So be well, stay strong for me, and know that there is much love sent your way…every day.

Today's music comes from the opening of the movie Moulin Rouge, a variation of Nat King Cole's Nature Boy because "...the greatest thing you'll ever learn is to love and be loved in return."

There was a boy
A very strange, enchanted boy
They say he wandered very far, very far
Over land and sea

A little shy
And sad of eye
But very wise
Was he

And then one day
The magic day he passed my way
And while we spoke of many things
Fools and kings
This he said to me

"The greatest thing
You'll ever learn
Is just to love
And be loved
In return."

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...