Day – today: … I tripped on a cloud and fell-a eight miles high…

May 8th, 2017 by

“…I tore my mind on a jagged sky…
…I just dropped in to see what condition my condition was in…”

Hi everyone,

Yes, we are still here… ok, truthfully all we care about is Karen! … and the cats, … and the raccoons, squirrels and nephews and nieces (note in the same breath as the squirrels) …
a lack of updates means “new normals” are just normal with an oddity which warrants exploring now and then.

So near term is another set of symptoms and another check up – insert Alfred E. Newman’s line here.

Karen is ok, but in the trapeze of life she will always be working without a net.

Wishing all the travelers well.

May 8, 2017

Day +2192: Imagine me and you, I do…

Nov 30th, 2016 by

“Me and you and you and me,
No matter how they tossed the dice, it had to be,
The only one for me is you, and you for me…”

Mary Lou and Karen

11/30/2016: Six years since my rebirth! Michael has written a poem in honor of my marrow donor. 😍

Mary Lou

Miraculously a chance was given…
Anonymously and without expectation…
Rewards never sought…
Yours is the gift that carries on…

Life – no other way to state it….
Our gratitude is without measure…
Ultimately – a gift of love, hope replacing exit.

Thank you, Mary Lou!

Much love,
Michael and Karen

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 😉.)