Day +2812: Where have all the flowers gone, long time passing?

Aug 12th, 2018 by

“Where have all the flowers gone, long time ago?
Where have all the flowers gone?”

We are well.

Winter snow turned into Spring rain into the Summer monsoons.
Nope, we did not move.

“Hey farmer when you gonna fix that leakin’ roof?…
…Ah stranger, when its rainin’ it’s too wet to fix it …
..and when it’s dry it’s just as good as any man’s house…”

Entropy – not just for physics anymore.

The roof is patched …for now.
Lawn – definition: anything in the yard that is green, including poison ivy.
Benjamin the groundhog living under the hot tub doesn’t seem to mind.
The Trash Pandas – other people’s term for our masked kids outside …ten on the deck last night are placing orders for Alpo and cherry danishes.
The crow and squirrels prefer sunflower seeds and peanuts.

The cats follow Karen around the house… everywhere … singing in mews and meows:

“I will be your keeper for life as your guardian…
…I’ll be your warrior of care your first warden…
…I’ll be your angel on call, I’ll be on demand…
…the greatest honor of all, as your guardian…”

Karen still goes to photo therapy weekly for GvHD.

Life is pretty normal …. thanks to Mary Lou.

Greetings from the distant edge…
Wishing all the travelers the best…

Love,
Michael and Karen

Day +2,624: Let your mind rest easy….

Feb 5th, 2018 by

“Sleep well my friend
It‘s only our bodies that betray us in the end…

…We are alive
And though our bodies lie alone here in the dark
Our souls and spirits rise…”

Transplant Comrades

(Michael) Mike Orlowicz
May 7th, 1952 – January 17th, 2018

All words are inadequate … or maybe it is the author; so the tag line is from Bruce Springsteen’s “We are Alive” from the Wrecking Ball album.

So now a step back in time…

“…Day +31 Happy New Year (2010)…
Happy New Year and a new beginning, hope food is becoming more tolerable
Hugs
Debbie and Mike +91 …”

Early in the blog, I likened the whole bone marrow transplant to being a lot like standing on the edge of a cliff…the fear involved depends on the view and if you have to take the next step.

The “+91” was Mike’s day count after his stem cell transplant at Sloan Kettering, and he and Deb were blazing the path, stumbling along, and meandering through this medical miracle towards a life we all hoped would just be normal.

60 days may not seem like a lot, but when you’re looking for blood counts to go from zero to anything, it was Mike’s journey that showed hope and glimpse into a possible future. The scary stuff is always there, and a simple comment from Deb made it easier to deal with the crisis of the moment – the lifeline to be woven into the rope bridge to get beyond the cliff.

As the blog was the primary connection for our parallel journeys, a note here and there was valuable beyond measure and often eased or answered worries of our own. Over the years, as we struggled towards the place called normality, it was easy to lose yourself in yourself. As the Rebirthdays started to add up, the occasional note served to reassure. Then Mike relapsed and underwent the second stem cell transplant. The turmoil on our end was almost paralyzing; Mike was battling for his life again and Deb rededicated as the primary caregiver – What would we do if it happened to Karen? … it’s a question we had the luxury to ponder, the answer is entirely to obvious if one is facing the consequence.

Mike’s spirit and Deb’s love and support let them move on – and to our joy, Karen was extremely pleased that they visited for her fifth Rebirthday, and we all were able to meet for the first time outside of the virtual world.

This is the best memory and the picture to hold in our heart.

Never to be forgotten, you stepped beyond the cliff of the mortal realm and journey outside the twisted tangled paths of time. Farewell until we meet again.

“Across the universe divide,
And when I reach the other side
I find a place to rest my spirit if I can.
Perhaps I may become a Highwayman again
Or I may be a single drop of rain
But I will remain….”

Thank you, Mike and Deb.

Love,
Michael and Karen

Year Seven: But I won’t cry for yesterday…

Dec 5th, 2017 by

“There’s an ordinary world
somehow I have to find
and as I try to make my way
to the ordinary world
I will learn to survive…”

Thank you Mary Lou!

Day by day the years have slipped away; Karen is doing well and enjoying life. The house is chaotic and full of cats… Maya, Desmond, TabiBeth, Brian, Jake, Elwood, Minerva and Maxine fill it with joy. Maybe it is a survival mechanism to focus on the mundane and ordinary, and it is a luxury we have based on Mary Lou’s gift, Karen’s zeal for life, and small army of medical staff that our lives have intersected with on this journey. So the things to worry about: … will we get cable at the house (14 years and counting) …Is it going to snow? Where is the groundhog? Did you feed the raccoons? …Retirement? New Glasses? Did I really buy that many gems for that game? Leggings! Cataract surgery?

“Is this real life? …is this just fantasy? … Caught in a landslide. … No escape from reality…Open your eyes, look up at the sky and see…”

Seven years … the Rebirthday is still magical. So let’s remember to celebrate Life!

After 25 years, we got to witness Susanne and John renew their wedding vows – probably will not erase missing the original; but it was perfect! We lost our friend Dick this week after his eight year fight with Lymphoma. No, there are no gentle transitions. Karen’s fellow bone-marrow transplant recipients are writing the stories of their lives moment by moment. Like Laura and Ryan, who were able to adopt a beautiful baby girl. Life goes on moment by moment.

Every now and then I need reminded what reality is …not the new job! So wrapping up this “family Christmas letter from the edge”.

So to end with another song…

“I love you, though the stars may fade
And the mountains turn to sand … I love you…
’Til my body changes to an old man. I love you.”

Merry Christmas and Happy Holidays

Karen and Michael

p.s. Technically, we’re in year 8 since my 7th Rebirthday has passed.

Day +2548: I’m free, I’m free…

Nov 21st, 2017 by

”And freedom tastes of reality….”

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11/21/2017: Just a quick update to wish everyone a Happy Thanksgiving and to share some good news. I had my 5-year checkup with the otolaryngologist a week ago on November 14 and was declared to be cancer free, i.e., CURED. My hematology appointment on September 12 went equally well – nearly seven years after my bone marrow transplant. We have much for which to be thankful!!!

Wishing everyone a safe and happy holiday!

xoxo,
Karen

Day +2375: Hot legs, wearing me out…

Jun 1st, 2017 by

June 1“Hot legs, you can scream and shout.

6/1/2017: I saw a new doctor today, orthopedic specialist Dr. Raj Yalamanchili, to try to find out why my legs hurt so much, especially at night. After examining my knee x-rays, poking, pressing, and manipulating my legs, and asking lots of questions, Dr. Y said he thinks I have shin splints, and definitely arthritis in my knees. However, “given my history” (those words again!), he took another set of x-rays that included my full tibia and fibula. He showed me thickening on the front edges of the bones that can be indicative of shin splints, nothing else out of the ordinary. He advised that I reduce my activity level, take Tylenol for the pain every 6 hours (ibuprofen or naproxen would be better but are contraindicated after my incident with the bruising and petechiae), and take 1000 mg. each of Vitamin D and Calcium daily. If not better in four weeks, he’ll order an MRI.

For the arthritis, he recommended taking glucosamine for six weeks and then quit. If I notice a difference, resume; if not, discontinue. He also said if it turns out Tylenol isn’t sufficient to control the knee pain, he can do cortisone injections. In reply to my question about potential liver damage from Tylenol, he said based on my limited alcohol consumption, it shouldn’t be a problem but to get a liver function test (LFT) in addition my usual blood work at least annually.

I’m so glad I went – my anxiety level is greatly reduced, and I’m pleased to have found a new specialist whom I like very much.

Hope everyone has a great summer! Remember, if you don’t see any postings here from Michael or me, assume all is well.

Tag Lines

Leslie wins this round!

(not IDed unless otherwise noted)

  • Day +1858: It’s Time by Imagine Dragons (2013) (IDed by Leslie)
  • Day +1859: Photograph by Ed Sheeran (2014) (IDed by Leslie)
  • Day +1927: I’m Coming Out by Diana Ross (1980)
  • Day +1928: Watching TV by Roger Waters (1992)
    …Stuck in the Middle by Stealers Wheel (1972) (IDed by Cathy)
  • Day +1997: One Piece At a Time by Johnny Cash (1976) (IDed by Leslie)
    …Night Moves by Bob Seger (1976) (IDed by Dana)
    …1999 by Prince (1982) (IDed by Dana and Leslie)
  • Day +2117: Paint a Picture of Yourself (Michael) by Harry Chapin (1977)
  • Day +2192: Happy Together by The Turtles (1967) (IDed by Guy, Dana, and Leslie)
  • Day – today: I Just Dropped In by Kenny Rogers & the First Edition (1968)
  • Day +2362: Bruises by Train (feat. Ashley Monroe) (2012)
  • Day +2364: Comfortably Numb by Pink Floyd (1979)(IDed by Dana)