Day +3506: How do you slow your blood…

Jul 7th, 2020 by

“The expression on your face that told me
Maybe you might have some advice to give…”

Stats are a lot like statistics. If that leaves you a little puzzled, that’s ok; this blog entry is by Michael. There, the disclaimer out of the way.

After the bone marrow transplant (BMT), Karen’s blood counts never really did level out to what would be technically normal for the statistically average person. But as you might remember from almost ten years back, having counts for reds, whites and platelets at all is a bit miraculous (insert George Carlin with a Buddy Christ here). The counts, although a bit A. B. Normal, settled into a comfortably predictable pattern. Periodic blood work would always receive a gold star by the doctors or techs delivered with that “A Okay” smile. Any indicator of this or that being marked H or L (high or low), was professionally examined and declared ok for you too! All right the platelets are bit tiny and over-plentiful, too. Yes, a bit of generalization, since nobody is interested in the …cytes or …phils….; but I digress.

We often talked that once life runs over you with a bus with cancer in the driver’s seat, the illusion of immortality is crushed. Karen and others continue on, but as a survivor, the walk down the sunny road of life is forever draped in the shadows of uncertainty. So little things like periodic blood counts do more that indicate a state of current health. They provide a little emotional boost and reassurance to face the rest of the world and those trivial nuisances that a BMT presents along with the gift of life.

So Karen, yes you know her, the computer scientist and mathematician. Well she studies her blood work in detail – all patients should; but that math gene also causes her to track trends and here is where a bit of anxiety popped up. About six months ago the counts started trending downward still within the “ok” range. A consult with the Transplant doctor went as predictable – you’re ok! No worries! Don’t misunderstand, we have great faith in his technical expertise; but farting rainbows and roses seem be a “bedside manner” flaw in his patient interactions. The counts are mostly normal, but have been dropping unexpectly? What does that mean? Hey, you’re ok!

“…Limbo lower now..
…Limbo lower now…
…How low can you go?…”

It’s the human thing; uncertainty results in the mind latching onto the worst possible scenario – relapse or for a twist, Lymphoma. Ok, that was me.

Karen, on the other hand, called her hematologist and her routine appointment was moved from August to today. Karen spent an hour with her hematologist. Simply, he is a straight shooter. We trust him implicitly, but Karen still makes him explain the whats and whys of his diagnosis. Blood work check. Cells scanned under the microscope. Flow cytometry panel pending …I hate waiting.

“…. How do we sleep
While our beds are burning…”


“…How can we dance
…When our earth is turning…
…How do we sleep…
…While our beds are burning..”

How to eat a chocolate covered cockroach, oops wrong chapter.

So, why not cancer? Because if it was a relapse your counts would have tanked. What is causing the downward trend? Could be a myriad of things. Ok, so going to do monthly bloodwork for awhile again and see if this is just a switchback in the road.

If you find this a little less than reassuring remember it’s Tuesday.

Karen perseveres. She is ok.

Sometimes this is as good as it gets.
Michael

p.s. As usual, three songs for you to name.

Day +3480: What hijacked my world that night…

Jun 10th, 2020 by

“To a place in the past
We’ve been cast out of? oh oh oh oh
Now we’re back in the fight
We’re back on the train
Oh, back on the chain gang…
A circumstance beyond our control, oh oh oh oh
The phone, the tv and the news of the world
Got in the house like a pigeon from hell, oh oh oh oh
Threw sand in our eyes and descended like flies
Put us back on the train
Oh, back on the chain gang….”

6/10/20: My first encounter with the outside world in nearly 3 months happened today, a blood draw for CMP and CBC. I was fine going in, masked and sanitized. Coming out, I felt inexplicably sad, not even sure why. I went to the nearer White Marsh lab instead of my usual Express Testing lab at East Baltimore Hopkins. I missed the busy but friendly staff. I don’t know if it was location or masks or Covid-19 but today seemed very cold and impersonal, only two staff members and 3 other patients, no friendly exchanges. With the temperature in the 90s, I gained new sympathy for people who object to wearing masks for extended periods. It was very uncomfortable even though I wholeheartedly support the directives to continue wearing them until we all can feel more reassured about not catching the virus or perhaps worse, unknowingly transmitting it to others.

I am filled with compassion for everyone who has suffered illness, social isolation, financial disaster, or any of the myriad of other life changes that came so abruptly and unexpectedly upon us. However, although initially racked with crippling anxiety over the potential of not being able to get any needed medical attention due to the pandemic, the past couple of months, I settled into a new reality where my life felt very safe and normal, not plagued by waiting for results from my next scan or blood work, not wondering if I’ve relapsed or have developed some new scary condition. Just enjoying my “boring” pre-cancer life, sleeping when tired, waking when I want, eating on my own schedule, working on my photo journaling, enjoying the kitties and wildlife, daily walks, just BEING. We’re extremely fortunate that, so far, we haven’t been impacted in any major negative way medically, financially, socially, or otherwise. Too many others have not been so lucky.

So misfit that I am, while the rest of the world rejoices at re-entering society, I was in tears (figuratively since I can’t produce real tears anymore) by the time I emerged from the lab. I longed for my pre-cancer life from 11 years ago that I ironically glimpsed again due to the quarantine, possibly even better now because I’m retired and have Michael, now happily retired, to share it. And the newer normal post-pandemic reality seems harsher and scarier than my prior new normal that I thought I’d adapted to reasonably well. This, too, shall pass…right?

I’m resilient and a late blooming optimist so soon cheered by the simple act of stopping at a nursery and heading back home with the car overflowing with flowers as well as fresh tomatoes and strawberries. I’m back in my comfy recliner eating fudge brownie Ben and Jerry’s, watching our groundhog contentedly crunching dog food. Our cats are purring. Michael is playing on his iPad while munching a sandwich. We have no appointments until next Tuesday.

Life is good.

xoxo
Karen

Day +3400: Tag, you’re it, tag tag, you’re it…

Mar 22nd, 2020 by

3/22/2020: Time for a long overdue tag line update!

(not IDed unless otherwise noted)

  • Day +2375: Hot Legs by Rod Stewart (1977)
  • Day +2548: I’m Free by The Who (1969) (IDed by Deb)
  • Day +2562: Ordinary World by Duran Duran (1993)(IDed by Chris)
    …Bohemian Rhapsody by Queen (1975) (IDed by Chris and Leslie)
    …Two Fine People by Cat Stevens (1975) (IDed by Leslie)
  • Day +2624: We Are Alive by Bruce Springsteen (2012) (IDed by Michael)
    …The Highwayman by Jimmy Webb (1977)
  • Day +2812: Where Have All the Flowers Gone by Pete Seeger (1955)
    …Arkansas Traveler by Michelle Shocked (1992)
    …Guardian by Alanis Morissette (2012)
  • Day +2886: When I’m 64 by The Beatles (1967) (IDed by Deb, Dana, and Heather)
    …Blue for You by Men at Work (1983)
    …Happy Birthday by Patty and Mildred J. Hill (1893)
  • Day +2922: Handlebars by The Flobots (2008) (IDed by Cathy)
  • Day +2924: First by Cold War Kids (2014)
    …Changes by David Bowie (1972) (IDed by Dana)
    …I’ll Stand By You by The Pretenders (1994)
    …Human by Rag’n’Bone Man (2016)
    …Tears by Rush (1976) (IDed by Dana)
  • Day +2939: You and Me by Henry Mancini (sung by Julie Andrews and Robert Preston in Victor/Victoria (1982) (IDed by Chris and Dana)
  • Day +2988: You Bet Your Life by Rush (1991)
  • Day +2996: All About Waiting by Dhani Harrison (2017)
    …You’re the Inspiration by Chicago (1984) (IDed by Chris)
  • Day +3287: The One by Elton John (1992)
  • Day +3368: Pirelli’s Miracle Elixir by Stephen Sondheim (from the musical Sweeney Todd: The Demon Barber of Fleet Street) (1979)
    …911 by Cyndi Lauper (1986) (IDed by Dana)
    …Wild World by Cat Stevens (1971)
  • Day +3399: Memories by Maroon 5 (2019)

Day +3399: Here’s to the ones that we got…

Mar 21st, 2020 by

“Cheers to the wish you were here, but you’re not
‘Cause the drinks bring back all the memories
Of everything we’ve been through
Toast to the ones here today
Toast to the ones that we lost on the way
‘Cause the drinks bring back all the memories
And the memories bring back, memories bring back you.”

3/21/2020 Today, I post very wise words from fellow caregiver and dear friend, Deb. I honestly feel like I owe her and her husband, Mike, my life. He was my inspiration. I don’t think Michael and I could have made it through my transplant without his paving the way and all of the great humor, encouragement, and practical advice from both of them. Deb lost Mike to a virus two years ago. They’ve both been at the forefront of my mind as we navigate this overwhelming shift in our “new normal” in terms of the current pandemic. As always, Deb’s words are practical and comforting, helping gain perspective in a time of uncertainty. Much love to you, Deb, and to Mike’s memory. Please heed Deb’s words. We’re all in this together.

Sponges, toothbrushes, hand towels, these are just a few items that can hold a virus or bacteria. We all need to be smart, really smart to stop the spread to those at risk. I did not learn this a week or two or four weeks ago. I learned this 10 years ago. Nothing new for those who have a compromised immune system, it all comes back, like riding a bike.

I’m not panicked or overly worried, I’m been there too often and for a long time to be freaked out. I remember when ‘going out’ was retreating to the newly finished basement for a change of scenery, we were the lucky ones. I think there is a lesson to be learned from all of this, whether it be medically or financially, never diminish the struggles of others. Over the years I’ve heard people tell me they did not get the flu vaccine, too busy, heard someone who got sick, got the flu after the vaccination, etc. You do this for others! This is so important. A vaccine does not mean that nobody will be infected, it attempts to reduce the spread and the negative outcomes.

I doubt we will have a vaccine for this new virus by the fall and if we do how effective will it be. We do not need to panic, we need to stay vigilant, be compassionate towards others and always look up. I always wonder why people think a nation can survive with fewer people at the bottom?? Not a student of bees, but what happens when the worker bees diminish? Lots to think about.

~Deb Wade

xoxo, Karen

Day +3368: “Twas Pirelli’s Miracle elixir…”

Feb 19th, 2020 by

“That’s what did the trick, sir
True, sir, true
Was it quick, sir?
Did it in a tick, sir
Just like an elixir ought to do
How about a bottle, mister?
Only costs a penny, guaranteed”

2/19/2020 Greetings 2020, Can I see clearly now? Well, maybe not, but an update is a little overdue.

Karen is well, life moves along on its own pace. This year’s Super Bowl was not watched in the ER as a year ago, nor did we spend Valentine’s day in the ICU watching shock trauma choppers land on the roof next door as in 2010. All in all a wonderful new normal life. Well, those pesky annoyances post transplant as attributed to chronic Graft versus Host Disease (GvHD) do pop up at the most inconvenient times – yesterday, today, and tomorrow. However, as stated, life is good!

Early last year Karen’s blood pressure started acting up, and through a few visits to the Hopkin’s resident clinic, our lab rat, to her great disappointment, was put on a minimal dose of HCT. She can update y’all on the slew of regular and routine appointments.

“I’m dialing up 911
I’m on the brink of trouble again,
If you could change the time, a little,
Then everything would
fine, fine, fine.”

So, post transplant, Karen has been dealing with muscle spasms and cramping. Mostly, it is an inconvenient spasm, such as in the hand which then looks like one of those road signs in the middle of nowhere pointing haphazardly in all directions. Nome: 3211 miles that way, Seattle: 1400 miles 90 degrees out, Tokyo: 4 months 3 days swimming on the opposite, DC: 90 miles sorta south, and Baltimore: well, just straight down. You get the picture. Unlike us males, cramps are also nothing new to women; hence, let me supply an updated definition:

Hmm, 1) Cramps, like muscles knotting and the arms not really working. Yup, you had those too?
2) Cramps and spasms so that you can watch the pretzel reform itself repeatedly while trying to elevate and depress the bed to some position for sleep. Old hat you say, just drive on – well, ok.
3) Spasms shooting up both sides, inability to walk, labored breathing… feeling like being drawn and pulled apart by horses with no one crying mercy to put one out of her misery.

Well, if you had those too, then you bloody well wound up in the ER like Karen despite assurances by her of “I’ll be fine, fine, fine,” and fears that the doctor on duty also moonlights as a barber on Fleet Street. (The escalation of pain meds and muscle relaxants during this buildup was omitted so as not to cloud dramatic effect – or they didn’t do a damn thing.)

Bloodwork, IV, observation…slightly low sodium? Hey, she’s ok again. I mean fucking really?!? Sorry, forgot to bleep that.

“Oh, baby, baby, it’s a wild world
It’s hard to get by just upon a smile
Oh, baby, baby, it’s a wild world
I’ll always remember you like a child, girl”

So, Karen had this idea to try adding Pedialyte to her daily routine. Ok, 9 parts salty tasting crap and 1 part cranberry juice – result palatable? (Yes, it does come in obnoxious flavors for the brave). Wow, significant decrease in all the spasms and cramps. Of course the blood pressure meds and Pedialyte don’t complement each other, and Karen did another couple rounds with the Residents Clinic to get the meds changed.

The part in all of this that really strikes home and is continually the most frustrating is simply the lack of aftercare for post transplant patients. The journey continues, and there is just a lot of hit and miss in post transplant care. After all, the miraculous and statistical five year mark – you are cured; well years ago so… YES! Grateful to be alive, but are there so few that gathering the lessons are not considered valuable? Well, maybe that is just the problem – not a horrible markup to be had on measured salt and sugar water. (Not important – but discovery learning: Pedialyte does screw with a low carb diet).

So, looking forward….

Thank you!

First and Foremost to Mary Lou … the gift of life, doesn’t get better then that.

The doctors, nurses, technicians, clerks, general staff, et al that make the medical profession move forward, step by step…and yes, it is Tuesday every day.

The fellow travelers and your families – share the lessons, trials, and tribulations.

Finally to Karen, Mausi the lab rat. 97 – 35 love.

Finally, thank you for enduring the excerpts from the diary of just another mad man.
As normal, for fun ..three sets of song lyrics embedded above.

20:20 …far sooner than the mind attempts to plan a cloudy future, the past will be Picasso clear.

Michael