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

 

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?"