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

Frequent Flier

In my previous professional life, I used to do quite a bit of traveling. I have a special portfolio of sorts where I keep all my frequent flier and hotel reward program cards. If you’re one of those road warriors, you know the drill when you check-in for a flight or a night’s stay at your chosen hotel chain. They see the gold or platinum colored card and they smile and thank you for your loyalty and give you the fresh baked cookies or other perk that goes along with the program. It’s kinda nice actually, especially if you have to be away from home for days on end.

"Just a spoon full of Starbucks helps the chemo go down....in
 the most unlikely way!" Starbuck's courtesy of my sister, Lynette
(big hugs). We won't be giving up our day jobs to be songwriters
 any time soon, but we do have the tried and true family warped
 sense of humor! My nurse of the day, Carol wearing the latest in
chemo blue fashionwear.

Now, if my calculations are correct, I have 31 days here at the Hotel California, one of the club ‘med’ chains where you can check-out when the doc says it’s OK, but you never really leave.  I keep coming back three times a week when I’m not inpatient and I’m bedding down on night number two for another one of those extended stays. My travel plans have me checking out Sunday morning if all goes well. I don’t know if that will put me over the line for the platinum level rewards yet. If I were to guess, I would say it does since I have the nice room, so they must have sent the special fru-fru card in the mail. No cookies on check-in though, but the room service is pretty nice. Once I finish up in Seattle, I’ll no doubt have the coveted black card! Not too many of us get that one…and honestly, who would want one?

There have been a lot of things I’ve wanted and when I got it, found it wasn’t all that it was cracked up to be. I can remember a quotation on Mrs. Van Rosendaal's (my 9^th grade health teacher ... impressed I remember her name?!) chalkboard that pretty much put that sentiment in a nutshell: Far better to receive not what one wanted than to receive what one wanted not.” That’s true on a number of levels. Very clearly, I didn’t want to be a ‘frequent flier,’ so to speak, at the hospital, but there have been a number of silver linings I’ll write about as I am able to list them out. The term, ‘pay it forward’ has been poignant for me as I’m seeing so many of the things I’ve done both in my recent as well as my distant past coming back to surprise me in so many wonderful ways that I continue to be astonished. People’s true colors have shone through – thankfully, most for good, but some have risen far above what I could have conceived. For lack of a better term, I feel truly blessed, especially considering the extreme circumstances.

Now that I’m physically attached to an IV pole that has the yellow chemo bag ensign only a few hours a day, I have been wandering about the hallways and tunnels connecting buildings in the Veteran’s Administration Healthcare complex. I’ve seen a lot of people who are in pretty bad shape and not all of our wounds are visible. Some of our guys are returning from war where the scars are in their minds, some are amputees, some are like me and battling a chronic or other long-term illness, some are traveling great distances to be here and just trying to get that ache taken care of. You can see it on the faces and that of their loved ones. And then there are those you don’t see.

Of the many evenings I spend here, weekends are generally when the patients who need a little extra attention or are en route to another facility show up in the acute care ward where I am. My first weekend as an inpatient was in a semi-private room and my roommate was an older gentleman who had broken his hip and was suffering dementia. Every single exhaled breath was a moan. I didn’t sleep well that night. I came back Monday for aggressive chemotherapy and that first weekend brought another veteran suffering dementia who didn’t have the presence of mind to use the nurse call, but rather shouted for help. Ear plugs were required for sleep that night. Again, last night, my next-door neighbor wasn’t suffering from dementia, but he could out-curse any sailor I ever met. I had heard him shouting for a nurse earlier in the day, but about 11:30 pm, he was at it again and even though my door was closed, he was shouting loud enough for me to make out every word, every epithet, and every threat. My naval officer training was pushing its way up and after about 30 minutes of his tirade, I was ready to walk next door and find out who thought he was the hospital’s most important patient, but about midnight, it finally quieted down.

Today, it has been mercifully quiet.  I can only assume that he has been given the extra milligram of the pain medication he had been demanding…or a lovely placebo. That, of course, makes me wonder truly what it was that he wanted: was he, like so many veterans here, alone and in severe need of someone to give some attention or was there some legitimate pain that needed relief? Or perhaps a bit of both?

Because so many people on staff know me by name now, it’s not uncommon for them to stop by and chat me up. One of the administrators who takes the brunt of people like the man who threw the temper tantrum yesterday has much more patience that I do with that kind of behavior (obviously the person for the job!) talked to me a bit today and put the event into perspective without going into any details. It drove the point home that this particular Club Med is for healing, even if sleep isn’t a high priority! It drove home just how compassionate and longsuffering the staff is. That’s something I knew already, but the people that are hard to understand, hard to communicate with, or hard to placate prove that there’s an unwritten part of the job description for the nurses and med techs that transcends mere compassion and extends to a kind of love for one’s fellow man that is nothing short of awe-inspiring. I’ve seen it, I’ve experienced it, and I’m grateful for it.

This isn’t something I asked for as a frequent flier, but it took being one to really grasp it both in the big picture and in its many nuances. It’s more than knowing someone’s name; it took sharing the vision of hope in a child; it took mingled tears of losing a patient, of surviving one’s own cancer, of the promise of retiring in good health; it took sharing a smile, of our mutual humanity. I can’t say that these difficult patients will understand the kind of commitment that the people who work in health care have for their patients and their career, but you can be assured it’s completely devoid of politics and completely full of the qualities that allow for healing and for a thriving and healthy community.

Today’s music is a blast from the past, but the lyrics seem to be both a tribute to my medical professionals here as well as a reminder to myself.  Argent’s Hold Your Head Up, originally released as a single in 1972.

And if it's bad
Don't let it get you down
You can take it
And if it hurts
Don't let them see you cry
You can take it

And if they stare
Just let them burn their eyes
On you moving
And if they shout
Don't let them change a thing
What you're doing