A 1 AN A 2

A friend of mine – incidentally, my daughter’s father in-law – is on the tail end of his dance with acute leukemia. He sees, that despite leukemia being a really bad actor, that the experience with it was a dance of sorts. Make no mistake, the dance with leukemia is still the very much a dance with death, but like so many other dances on life’s card, there are some numbers you just don’t get to sit out. It took some time for me to warm up to that metaphor being in the middle of my own battle, but I get it. So, as for me right now? Well, I’m the guy you feel sorry for out on the dance floor, unable to quite figure out which foot goes where, but I will make the most of that performance and try to smile through it, nonetheless. After a while, I might even figure it out and occasionally, I actually look like I belong. The key is getting out and dancing, even when it feels awkward, tiresome, or downright silly. 

After many stumbles, I’m catching on to this little number called cancer, but if it’s all the same to the viewers of American Bandstand (yeah, I'm really dating myself there, huh?), I’d really like to try something else…something with a beat and easy to dance to!

The night the Titanic hit the iceberg, people were dancing. Some were dressed in their finery and others in their workaday clothing; some danced a waltz and others a folk dance. Style didn’t matter. Everyone came together to celebrate life in their way. They were told that this huge ‘unsinkable’ ship couldn’t be taken down. It’s fair to say that even though the ship had struck the iceberg, a good number of people continued to dance, oblivious to the fact that the compartmentalized design of the ship wouldn’t be enough to save it. As the ship listed and its crew started abandon ship procedures, things became real and the music stopped. Some of the people would obviously never dance again and the survivors would find their steps tragically altered.

Yet, they would have to find a way to keep dancing.

In a very real way, a cancer diagnosis is hitting that iceberg. It doesn’t just crunch in the bow of the ship, it rips open the side and unless some serious damage control takes place, the ship is going down mighty fast. For me, every day has been an exercise in damage control and thankfully, most of those days are pretty manageable. I have been so grateful for a wide network of friends and family, that I haven't really experienced a lot of pain or felt sick. Most of the side effects from the meds I do take are either offset by other meds or I can chalk it up to being relatively young, in decent physical shape, and genetics. Even the inconvenience of having to spend quite a bit of time around hospitals and doctors is bearable, albeit rather tedious after a while. I can pretty easily compartmentalize these things.

After a few chemo cycles, I know how my body reacts to the drugs and on what days in that cycle where I need to take extra precautions. I’ve learned to ‘listen’ to my body so I can be productive or when I need to back off. Sometimes that means that I’m up in the middle of the night working through problems and sleeping in the middle of the afternoon. Cancer doesn’t work on a time table and quite clearly, neither do I for a while. That can be pretty inconvenient for a social life or scheduling meetings, but it is reality. And it’s a good exercise for the ‘new normal,’ because up to this point, I played by the rules the Navy taught me: compartmentalize! Before cancer, I just pushed through pain or ignored the discomfort. I always got through it, whatever it was. Suffice it to say, leukemia is not something I can just put in a box and push through.

The difficult part is when a number of these small things happen in tandem or at the same time. It is then that inconveniences, procedures, or pains that would normally only register a 1 on a scale of 1 to 10 start to add up and then these otherwise inconsequential things grow from a manageable hole in the bulkhead into a gash that floods several compartments and the dance starts to look more like a seizure or fit as my figurative ship starts to go down. Having people to help right the ship and get me back to my feet has been crucial and of course, while that doesn’t translate into me sinking, boy can my stern drag!

During my first hospitalization, I felt that way a number of times, but as this adventure has progressed, I don’t find myself in extremis very often. That bulkhead keeping out the big ol’, bad ol’ icy cancerous waters seems to have been reinforced, boosting my threshold of pain a bit,. It doesn’t equate to meltdown moments being a thing of the past, just fewer and farther between. The dancing may look a bit better, but there’s still a lot of activity below decks to keep the ship afloat.



Lawrence Welk and one of the first
vanity plates from way back when!

Sure, I ponder whether this ship that I’m driving is going to make it to port some days, but this isn’t the movie, it’s life. That port is the cure and there’s another iceberg field between here and there called a bone marrow transplant that I have to navigate. I’m counting on successfully avoiding any more holes or gashes in the side of the ship, but the harsh reality is that it’s going to be a tough, if not outright perilous, journey between here and the cure and it’s going to take some time. In the end, learning to dance on a rolling ship that takes on water from time to time, will put me in a position to help someone else gather up their courage to step out on the floor, and with more grace than me, dance among the stars.

Cue the music, Mr. Welk … a one an’ a two … or maybe Vega4 and Life is Beautiful instead.

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

Life is beautiful
We love until we die
When you run into my arms
We steal a perfect moment
Let the monsters see you smile
Let them see you smiling
Do I hold you too tightly?
When will the hurt kick in?

Life is beautiful
But it's complicated, we barely make it
We don't need to understand
There are miracles, miracles

Yeah, life is beautiful
Our hearts, they beat and breakWhen you run away from harm
Will you run back into my arms
Like you did when you were young?
Will you come back to me?
I will hold you tightly
When the hurting kicks in

Life is beautiful
But it's complicated, we barely make it
We don't need to understand
There are miracles, miracles

Stand where you are
We let all these moments pass us by

It's amazing where I'm standing
There's a lot that we can give
It's just ours just for a moment
There's a lot that we can give
It's amazing where I'm standing
There's a lot that we can give
It's just ours just for a moment
There's a lot that we can give

Destination Medication Staycation

This is not where I'm spending my staycation...but I am going there!

My previous job had me traveling quite a bit, so I had enrolled in the loyalty programs for a few of the major hotel chains and had even gotten to the ‘gold level’ on a couple of them. It was nice to show up and have reception greet you with that little extra. Checking in today, I didn’t get the deluxe suite at the lesser known Club Med’s Salt Lake City premier destination medication staycation location – the VA Hospital – but I did get greeted with that extra je ne sais quoi! No fresh cookies, but the coffee’s not half-bad. And no needles today! Yeah!

Throughout the day, I had visits from the people that know me and as usual, it’s like Cheers! where everybody knows your name.

This week, I’m getting round four of consolidation chemotherapy as many people are feeling that I’ll get the call from the Puget Sound VA to begin the bone marrow transplant procedure. As I’ve said before, I harbor no illusions (or hallucinations for that matter) that this is going to be anything but a rough few weeks up front, but if my body’s response to the induction and consolidation chemotherapy treatments are any indication, I’m hoping for nominal graft-versus-host (GVH) and a speedy return to a more typical lifestyle.  I’m shying away from the word ‘normal,’ because my new normal, I don’t think, is going to be too terribly much like it was before.  It should have some similarities, but mentally, I anticipate a completely different outlook and point of reference.  If I were one to invoke business-speak, I could call it a genuine paradigm shift, but I loathe that kind of talk even though this is the kind of context where it makes the most sense.

Suffice it to say, a staycation at a hospital is really a bit of an oxymoron.  It’s hardly a vacation. I don’t get a great deal of sleep because at night I’m getting awakened to get my vitals checked and if I take a nap during the day, I still get that squeeze on the right arm and the lovely tasting medication, none of which make you feel like you’re on a pharmacological getaway. Now, that’s probably a good thing because no one is inflicting any pain on me. I get another infusion of that toxic chemical goodness that kills all the badness that attempts to kill me, of course, and thankfully, I’m able to predict pretty well what is going to happen chemically within me so I can keep ahead of the unpleasant side effects.

I can say that the food isn’t bad, but it’s not something I will be writing to a cruise ship line and suggesting they adopt the recipes.  I’m pretty easy to please for the most part and I have to say the VA system has done pretty well when it comes to mass institutional food. My exceptions are corn on the cob (which I normally really like), Brussels sprouts and peas (which I normally really don’t like at all), and for the love of God, can I have some ketchup? I’ll even forego the salt. I feel like a schmuck wandering down to the cantina on the ground level and grabbing a handful of ketchup packets, but a man’s gotta do what a man’s gotta do, right?

I understand that ADHD kids get a medication vacation where they go off medication every so often.  I, on the other hand, get these period where I’m a pharmacist’s dream where I get to list off things that sound like another language all in one 24-hour period.  I get cytarabine of course, which is the chemo drug that keeps the leukemia nastiness in check, but I’m also enjoying the loveliness of dexamethasone and Zofran steroids that come with the chemo; Allopurinol, which is normally prescribed for gout, so in my case, it protects my kidneys from the chemo; Prednisolone eye drops which keep my eyes happy from the chemo as it also is eliminated from my system through tear ducts; Prochloroperzine, which keeps the nausea at bay (and does a nice job, I must say). When I leave, I get a lovely assortment of antibiotics including ciprofloxacin, an antiviral assortment of acyclovir, and a beautiful bottle of pinkness called fluconazole.  Isn’t that special?! When you stay at the ‘other Club Med,’ you only get the best in unpronounceable things. I will freely admit I prefer the aromatherapy candles and the New Age music, but the alternative isn’t really much of an option for me right now. 

 



Admit it...who doesn't fantasize about
being in a place like this?

I have resolved that a getaway to Hawaii is definitely in order when I have been given the green light to travel.  My frequent flier miles are burnin’ a hole in my statement and needing to be used to get me to the islands and that loyalty point balance should offset the lodging. My dreams (when I actually can sleep long enough to have them!) has a gentle breeze blowing sheer curtains and drawing me out to the balcony where I enjoy tropical fruits for breakfast and can listen to the surf gently crashing ashore below. “Dorothy, wake up!” yeah, time for vitals again.
 

Oh, and look at the time.  The nurse is in her pretty blue gown and has a bag of clear fluid that has, yes, you guessed it, toxic chemical goodness. And no, it has not even a vague hint of pineapple, mango, or coconut aroma to it! Damn!  Hook me up…and I’ll take the graham crackers and 1% milk with my chemo tonight, please.  This is room service at the ‘other Club Med’ where only the coolest of cucumbers come for their destination medication staycation – the premier location, of course!

Be well, stay strong, and much love to you all…and enjoy your gourmet graham crackers and milk!

Today’s Music is courtesy of Natasha Bedingfield – Pocketful of Sunshine

 

I got a pocket, got a pocket full of sunshine
I've got a love and I know that it's all mine
oh, oh, oh
Do what you want, but you're never gonna break me,
Sticks and stones are never gonna shake me
oh, oh, oh

Take me away (take me away)
A secret place (a secret place)
A sweet escape (a sweet escape)
Take me away (take me away)
Take me away (take me away
To better days (to better days)
Take me away (take me away)
A hiding place (a hiding place)

I got pocket, got a pocket full of sunshine
I've got a love and I know that it's all mine
oh, oh, oh
Wish that you could, but you ain't gonna own me
Do anything you can to control me
oh, oh, oh

There's a place that I go
That nobody knows
Where the rivers flow
And I call it home
And there's no more lies
And the darkness is light
And nobody cries
there's only butterflies

The sun is on my side
Take me for a ride
I smile up to the sky
I know I'll be alright

The sun is on my side
Take me for a ride
I smile up to the sky
I know I'll be alright

Q & A, the Name Game, and Dancing into the New Normal

Today started out as one of those medically boring days, but at as the sun was setting, things got a bit exciting. I have made it a point to learn everyone’s name who comes into the room and takes care of me from those wearing white coats to the nurses and med techs to those who bring me my meals and empty the trash. I try to learn them all. Well, that good deed did not go unpunished today. While watching a DVD early this evening, a VA police officer opened the door and asked for me by name. Knowing who I am isn’t too terribly hard since I have a placard outside my door with my name emblazoned on it as well as a beautiful wrist band that I was warned I should shred when finished with it since it has my social security number on it. The officer asked me if I saw who it was who emptied the “sharps” bin today. My point in learning people’s names is to write a glowing letter of thanks to the VA for the wonderful care I’ve received since being here. Little did I imagine that the one who was emptying the trash was also salvaging the drugs out of the syringes and using or selling them.

My room is right next to the stairwell at the end of the hallway and most all of the medical staff comes in and leaves via those stairs and that’s how I found out that my remembering names was the key to quickly solving this problem. One of the techs came by and thanked me for positively identifying the person. Apparently this has been going on for some time and it doesn’t take a medical professional to tell you just how dangerous what this person was doing really is. I have to assume that this person is no longer employed, but may also be facing charges.

Maybe my good deed du jour was why there was a cookie on my food tray tonight. Nah, I bet everyone got one. Besides, the frequent fliers get the cookies when they arrive and they’re fresh, hot, and totally fattening! Anyway, I got my sugar buzz courtesy of my ma who brought a really good brownie in from her latest foray to Wendover, Nevada. With a little black coffee, it made for a great afternoon treat.

Learning the names of doctors has proven challenging because they typically rotate through different departments. This is compounded because there are two teams of doctors who attend me. There are the hem/onc (hematology / oncology) doctors which specialize in the treatment of the blood cancers and there is the medicine team, which is the group of doctors that administers what you might consider routine. They consult with the hem/onc doctors to make sure their treatment is consistent and they carry out the chemo orders prescribed as well. At least that’s my understanding of how the two groups work together.  The hem/onc doctors hold clinic at the VA on given days and then there are fellows who rotate through the Huntsman Cancer Center and other outpatient clinics as well as the VA on a monthly basis, so I’m actually on my third hem/onc fellow while the main doctor is the same one overseeing my treatment, oddly called “salvage.” The medicine group also rotates through but on different time schedules, so I’m on my third medicine team as well. The medicine team more closely resembles what you might see on “Gray’s Anatomy” where there is an attending physician, a resident, and a gaggle of interns, all taking notes and paying close attention. I probably don’t make it easy on them because I’m playing class clown and it’s this group who was entertained by my crass t-shirt and ‘no hair day’ beanie. Once I turned the subject to medical details, it was obviously a different story and it showed that the class clown was also paying close attention to what they were doing, even though my results were pretty low-key.

I used my one-on-one time with my hem/onc fellow today to drill him on specific questions I had. Trying to get information on the Internet, even from the most reliable sources, tends to be rather noncommittal and doesn’t address the kinds of questions I have.  I had also been visiting the Leukemia-Lymphoma Society bulletin boards and finding that the questions and answers there were typically geared toward children and more elderly patients. Much of what I read focused on relapse as well, which gave me a whole new line of questions to ask. Last week, I found out that the particular strain of leukemia that I was diagnosed with was referred to as “M5B.” This “staging” of my particular cancer has more to do with how well cells mature from my bone marrow than any severity of the disease. This was a relief as I had been thinking that the higher the number, the worse things were as it is with cancers with physical tumors associated with them. With the exception of the M3, they're all treated the same at the onset with rare exception. I also prodded him about prognosis, but he explained in a bit more detail than I got last week with my other hem/onc doctor that it comes down to how well my transplant goes and the reason that I had to get a transplant rather than simply getting chemotherapy since I had normal chromosomes. “Normal” chromosomes don’t make someone either high or low risk of relapse after induction chemo, but there are two additional mutational tests that are run in conjunction with the initial biopsy. One of these mutation tests made me low risk, but the other test came back positive and offset the first and indicated that without a marrow transplant, the leukemia would certainly come back.

So, on to the transplant. Once that happens, there will be inevitable graph versus host issues and that’s important.  The severity of that is staged on a scale of 1 to 4. With no graph versus host (GVH) issues, it is likely that the leukemia will recur; on the other hand, a severe case isn’t something we want either, but it does indicate that the new immune system is aggressively attacking the leukemia and of course, that is a good thing, so the hope is that there is a moderate degree of GVH. My big question had more to do with restrictions after getting back from the transplant and the good news is that my “new normal” is simply a matter of maintaining a frequent flier status with doctors and hospitals, but this kind of interaction wouldn’t be a lot of inpatient like it is now. It would also make it easy to see if there was a relapse very early and come up with a different treatment regimen quickly. As for getting physically active and traveling and doing the things I wanted to do, no restrictions. And that, my dear readers, was what I really needed to hear today!

So, we move toward getting this transplant done and getting to the new normal. You all know I have places to go, people to see, and I do have some perfect moments to discover!

My music selection for the day is Lee Ann Womack’s I Hope You Dance. I chose it as a nod toward a friend of mine who is on the downside of his own battle with AML.  He is my daughter’s father in-law and although admittedly cancer sucks, for him it was well...a dance!

I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance

I hope you dance
I hope you dance