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”

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 direction. 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

Day +3287: And all I ever needed was the one…

Nov 30th, 2019 by

“Like freedom fields where wild horses run
When stars collide like you and I
No shadows block the sun
You’re all I’ve ever needed
Babe, you’re the one…”

11/30/2019 I cannot let this rebirthday end without many thanks to my DNA sister, Mary Lou, for whom I’m enormously grateful every day. Without the precious gift of her healthy bone marrow 9 years ago, I would not be alive today. Now and always, she’s literally a part of me.

Much love, Karen

Day +2996: I know all there is to know about waiting…

Feb 12th, 2019 by

“Never mind a quick disintegration
Wind will carry you just like a leaf
Like a guide that’s broken captive from a string
So much to remember when the day ends
So much to forget when you’re afraid
After all the troubles and the breakage
I know all there is to know about waiting
Waiting, waiting, waiting….”

2/12/2019: Last week’s biopsy went smoothly – 5:30am arrival, 7:30am procedure, home by 11am, comfortably medicated and with instructions that included soft diet for two weeks. According to Michael, my surgeon was very happy afterwards. She thought everything looked good although there was a “mysterious blood spot” so she took an extra sample. And then, as usual, we waited…trying to remain optimistic for that difficult space in between biopsy and results.

Happily, we didn’t have to wait too long, just six days. Better still, all results are benign:

INTERPRETATION AND DIAGNOSIS: (lmr) 02/07/2019 @ 07:37 pm
1. RIGHT BASE OF TONGUE (BIOPSY): BENIGN SQUAMOUS MUCOSA WITH NECROTIZING SIALOMETAPLASIA AND FIBROSIS.

Since we had no clue what this meant beyond that all important word BENIGN, some quick research revealed:

Necrotizing sialometaplasia (NS) is a rare benign, ulcerative lesion, usually located towards the back of the hard palate. It is thought to be caused by ischemic necrosis (death of tissue due to lack of blood supply) of minor salivary glands in response to trauma. Often painless, the condition is self-limiting and should heal in 6–10 weeks. It occurs more often in men in the fourth decade of life. Although entirely benign and requiring no treatment, due to its similar appearance to oral cancer, it is sometimes misdiagnosed as malignant. Therefore, it is considered an important condition, despite its rarity.

We had a good laugh as soon as we saw RARE – yep, I’m still the outlier. We strongly suspect a connection with ongoing GvHD.

I close with another tagline, dedicated to Michael who has undoubtedly suffered way more than I have through this recent branch in our continuing journey.

“You’re the meaning in my life
You’re the inspiration
Wanna have you near me
I wanna have you hear me saying
No one needs you more
Than I need you…”

Love to all,
Karen

p.s. Next post will be tag line identification for this and several previous posts. Get your guesses in now.