Day + 1928: Did we do anything after this?

Mar 11th, 2016 by

“I have a feeling we did.
We were watching TV,
Watching TV…

0730 Wake.
0830 Drive to Hopkins.
0920 Drop off Karen out front.
0930 Park.
0935 – 1200 Pre-Op.
1200 – 1230 Pre-Op art work.
1305 Off to surgery.
… Lots of time to wait … An episode of House on the left side, Nancy Reagan’s funeral on the right. …Not exactly stuck in the middle with you….

Karen's time in surgery is the longest green bar.

Karen’s time in surgery is the longest green bar.

My hospital routine is all too normal, too easy to fall into. So, we’ve addressed quality of life once or twice in the blog; crises take over on the moment, even if they only last the split second, but quality of life is more defined by the things that shape the ‘day in’ and ‘day out’ of life. Karen continues to deal with the GvDH, and so the road has led to today’s surgery.

The surgeon talked about the procedure, the side effects – no rattlesnake bite analogies were used but the concept of nipples falling off did come up. They talked about the strategy and branches the surgery might take, and after looking at the scar tissue on her back, I think the surgeon and Karen are in sync on the plan.

Time to wait.


1735 Surgery Complete – so far so good –  Post op cycle…..

2133 Home! (Stopped on the way home for Chopstix dinner 😉.)

Day +1927: There’s a new me coming out…

Mar 10th, 2016 by

“And I just had to live
And I wanna give
I’m completely positive…”

3/10/2016: Hello and happy almost spring! We saw the terrific musical, Motown, this week, and it occurred to me this is a good time for a brief blog update. (That’s a hint for the tagline, too.)

Motown at the Hippodrome

January flew by quickly for the most part although I had a bit of a scare on the 28th. While carrying one of our cats down the stairs, still in his carrier, for temporary isolation after he was neutered, I slipped and fell. Luckily, because it was our spiral, I was able to grab the rail on one side and hang on as I screamed for help instead of falling the whole way down – good thing Michael was home. I hung on, lying upside down on the stairs and having an extreme panic attack. Michael got hold of me and talked me into letting go after he let me know the cat was ok. He coaxed me one step at a time, still upside down on my butt, down the metal steps until I got to the floor, face to face with Elwood the cat, still in his carrier. After the shock wore off, I got up – no visible injuries except bumps on the back and top of my head and a scrape on my foot plus muscle spasms everywhere from being so tense. I didn’t even bleed (although the scrape is not quite fully healed after six weeks). I am never, ever hysterical about anything but this time I totally freaked out, during and afterwards. Perhaps it was realizing how badly I could have been injured. The funniest part was later Michael said when he heard me scream, first thing he thought was a raccoon had gotten into the house and I was fending off an attack against Elwood. It was all laughable in the end.

February marked a full year of wearing PROSE scleral lenses, and they have made a remarkable improvement in my quality of life. I also had routine six month dermatology and hematology appointments in February, both of which were delightfully boring. My doctors both say I look better than they’ve ever seen me look. My bloodwork is great, and biweekly UVA1 phototherapy treatments are keeping my skin GVHD and seborrheic dermatitis under control. Depending on calibration of the machine and age of bulbs, each 50 Joule session went from 15 minutes/9 seconds up to 18 minutes/30 seconds and then back down to 12 minutes/49 seconds. It’s surprising how long a few minutes seems when standing in one place. I pass the time by doing my neck stretches.

I had my six month dental checkup and cleaning this week, also delightfully ordinary. The fluoride treatments are doing their job.

After a year of contemplation and completing required physical therapy and consultations, and receiving the health insurance stamp of approval (i.e., medical necessity), I’m having my breast reduction surgery tomorrow. I’m a little nervous about the procedure but am very much looking forward to the results and further improvements to my quality of life. Perhaps Michael will entertain you with tag lines and laugh lines while he does his waiting routine at the hospital (Johns Hopkins, as usual).

Day +1859: We made these memories for ourselves…

Jan 2nd, 2016 by

“Where our eyes are never closing
Hearts are never broken
And time’s forever frozen still.”

1/2/2016: Finally! With the addition of a bunch of photos for years five and six, including a sub-album for Karen’s Rebirthday party, our blog is completely up to date.

Michael & Karen

Remember – if you don’t hear from us, no news is good news. We’re hoping for a boring year. 😀

Much love,
Karen & Michael

Day +1858: It’s time to begin, isn’t it…

Jan 1st, 2016 by

“I get a little bit bigger but then I’ll admit…
I’m just the same as I was …
Now don’t you understand …
I’m never changing who I am…”

1/1/2016: Happy New Year Everyone!

Karen has outlined the medical adventures in summary fashion – another year wrapped up in a page of progress and procedures. Uncertainty is certain; all else is the moments upon moments that build the memory of a year.  So Cheers! Here’s to life,  …to Karen …to Mary Lou … to all the travelers on this and yet their own road  …to each and every one of you!  Happy NewYear!

Tag Lines

(not IDed unless otherwise noted)

  • Day +1517: Hold Your Head Up, Argent (1972)
  • Day +1519: Money, Pink Floyd (1973) (IDed by Chris)
    Dark Side, Tim Minchin (2005) (IDed by Chris)
  • Day +1551: I Can See Clearly Now, Johnny Nash (1972) (IDed by Heather)
  • Day +1763: My Type, Saint Motel (2014)
    Birthday, The Beatles (1968) (IDed by Dana and Leslie)
  • Day +1780: Oh Very Young, Cat Stevens (1974)
  • Day +1785: Rolling in the Deep, Adele (2010)
  • Day +1806: 911, Cyndi Lauper (1986)
  • Day +1833: If Love was a Train, Michelle Shocked (1988)
    Casey Jones, Grateful Dead(1970)
    Young Frankenstein quote (1973)
    The Morning After, Maureen McGovern (1971)
    Victor/Victoria quote (1982)
  • Day +1835 : Where Everybody Knows Your Name, Gary Portnoy (1982) (IDed by Leslie)
  • Day +1837: Taking It All Too Hard, Genesis (1983)
    Nine in the Afternoon, Panic! At the Disco (2008)
  • Day +1856: Dreidel, Don McLean (1972)

Day +1856: I feel like a spinning top or a dreidel…

Dec 30th, 2015 by

“The spinning don’t stop when you leave the cradle,
You just slow down…”

12/30/2015: First the main news – all test results are in from my 5-year post bone marrow transplant exam and 12th(?) bone marrow biopsy on December 10. All is good! I’m still 100% donor with no evidence of disease. Thank you again, Mary Lou, for sharing your amazing marrow!

The day started out ordinarily enough – traditional Hopkins selfie, 5 vials of blood drawn, saw doctor and nurse practitioner. 5-Year ExamI expected them to tell me not to return but they want to see me in six months to keep watch on my GVHD. I was called for my biopsy and overjoyed to see my favorite NP, Don, had not retired and would do the procedure. Instead of the usual tiny, cramped room, they’d moved to a spacious room up on 5th floor. Ah, everything should be much easier!

This procedure is usually uncomfortable, even painful, but only for about a minute or two at most. Of the six different NPs and one MD I’ve had, only one was inept which, in turn, caused a traumatic and painful time for me. Don is by far the best – he’s fast and efficient and always gets a good sample for the lab. This would be my fourth biopsy with him, so I wasn’t worried as I lay face down on the table, sweats pulled down just far enough to grant access to my pelvic bone.

As Don anesthetized my behind with a huge syringe of lidocaine, I got one of my random lateral back cramps, the first hint that all would not go smoothly. I asked Michael who, at my request, was busily photo-documenting the procedure, to come and rub my back so I could remain still for Don. The cramp subsided but Don was having difficulty getting a sample and kept moving the needle around. He must have hit a nerve because it hurt badly. I remained quiet but Michael peered over the mask he wore to protect others from his cold directly into my wide, pain filled eyes. Suddenly, he exclaimed, “It’s hot in here,” and disappeared from my view. I called to him, “What’s going on?” Don said, “He’s taking off his jacket and sitting down.” BiopsyNext, I heard a horrid raspy, groaning, choking sound I don’t even know how to describe and female voices, “He’s out – is he coming around? Sir, can you hear me? Are you okay? Do you know where you are?” He replied, “Yeah, I’m fine,” but he sounded not so good. Don was still working on me but my pain was forgotten as I heard more voices, “What’s his BP?”  “Call for a gurney.” “Sir, we need to get you to the ER to make sure you’re all right.”

Don was finally finishing with me as the gurney arrived. I sat up and said, “I have to go with him,” and was told I shouldn’t get up so soon after my biopsy. I insisted, so they got me a wheelchair, and our mini convoy wound its way through the hospital to the ER, escorted by security.ER
Thus began the game of “Who’s the patient here anyway?” Between the two of us, we kept the doctors, nurses and other staff entertained for the next several hours while they tested him thoroughly – blood work, EKG, physical exam – and gave him IV fluids. They finally decided he probably passed out due to a combination of cold medicine, mask, heat, dehydration, and lots of stress, and sent us on our way.
Our drive home from the city was uneventful – we were both ravenous by then so stopped on the way for dinner at our favorite Indian restaurant, Sizzling Bombay, a happy ending to yet another strange day.

p.s. Everyone at the busy Johns Hopkins ER was super caring, thorough, and attentive, a huge contrast to our experience at Upper Chesapeake on Novermber 7 (see Day +1806).