Day + 2117: “… paint a picture of yourself…”

Sep 16th, 2016 by

“…Let the images flash past…”

Today’s event is just side cleanup from the reduction surgery, nothing too difficult. The sides cannot easily be done at the same time as the front.

0400. “…from your alarms clock’s warning…”
0415. Black coffee
0430. Head to Hopkins
0520. Arrive
0540 – 0630. Pre-op and marks for incisions
0700. anesthesiologist
0725. Nap time!

0800. Status board shows the word incision – ok, whose bright idea is that? In the operating room, post op and recovery were good enough! TMI. Wonder if they ever post: ” Whoops” on the status board.

Just waiting….

GVHD is also a “gift” that keeps on giving. Yes – I’m not a morning person, why do you ask?

Karen will be great … Just waiting!

Noon. Home with naps for both of us. All is well.

Day +1997: I got it one piece at a time…

May 19th, 2016 by

“…and it didn’t cost me a dime.
You’ll know it’s me when I come through your town.”

5/19/2016: Been there, done that, got the t-shirt. When I took this selfie a couple of years ago, I had no idea just how true this statement would become. Mary Lou’s fabulous bone marrow was only the beginning, followed by weight loss, new wardrobe, new hair style, salon tan, massage therapy, lifted chin, contact lenses, sculpted breasts…all expenses paid. It all sounds very glamorous and decadent, doesn’t it? Let’s rephrase a bit:  perpetual nausea and dysgeusia for a year, permanent hair loss, sclerodermatic graft versus host disease, permanently numb neck with dual scars, lymphedema, ruined tear ducts, abraded skin….

Cancer. Twice. Hideous disease, miserable treatments. Nonetheless, I’m among “the most fortunate of the least fortunate.” [source of quote forgotten] I survived! Thanks to my generous donor, modern technology, skilled medical professionals at a nearby world-renowned facility, and awesomely supportive family and friends, life is fantastic. Thanks to our excellent dual health insurance coverage through Michael’s current employment and military retirement, our financial burden has been minimal for more than a million dollars of medical expenses. Insurance paid for nearly everything. What do uninsured/underinsured people do? Just die? I’m appalled at inflated medical costs and that health care availability and quality depends on a person’s wealth or insurance coverage.

“And points all her own sitting way up high, way up firm and high…”

Just over two months since my breast reduction surgery, and everything is healed and looking good – great, actually. GvHD trauma persuaded me to have this procedure but if I’d known how much I’d love the results, I’d have done it many, many years ago. I was apprehensive beforehand and talked to several women who’d already had reductions. Without exception, they told me it was the best thing they’d ever done for themselves. Now I understand and echo their enthusiasm! I feel better, I look better, my clothes fit better – there is absolutely no downside. If you’re contemplating the procedure for yourself and want more personal details, email me. My family and close friends know all too well (much eye rolling) how much I like to talk about my new breasts, ha ha. And, yes, the GvHD spots on my back and shoulders are completely healed. I’m continuing UVA1 therapy biweekly to prevent recurrence. I have one more checkup with my breast surgeon on June 17 with a follow-up in one year. Complete healing takes a full year but 95% occurs in the first three months.

In general, everything is delightfully boring on the medical front. I had a six month routine checkup with my otolaryngology surgeon on May 10. She examined me thoroughly manually and with the scope. Everything looks great. My annual checkup for the PROSE lenses is May 26, and I see my transplant team on June 16, possibly for the last time (fingers crossed).

“So tonight I’m gonna party like it’s [Day +] nineteen ninety-nine…”

In the meantime, I’m visiting my friend Laura in Minnesota for a week. We always have fun, totally relaxing time together. This evening, we’re attending her husband Ryan’s spring concert. I’m really looking forward to seeing and hearing him with his students!

Dear readers, you are way behind on tag lines – and three more songs in this missive. I’ll give you a little more time and post answers when I update the photo album sometime soon.

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