Day +2362: These bruises make for better conversation…

May 19th, 2017 by

“…Loses the vibe that separates
It’s good to let you in again
You’re not alone in how you’ve been
Everybody loses, we all got bruises
We all got bruises….”

IMG_20955/19/2017: Michael set me up with his vague, worrisome sounding post a couple of weeks ago. He said it would force me to do an update to let everyone know I’m fine. Has it really been nearly six months since my last post, and a year since a comprehensive update? Procrastinate now, my constant mantra. Now that I’m 6-1/2 years post transplant, we no longer keep the detailed diary of traumas and treatments to periodically review and pass along to others.

Life is good. At the same time, we’re never completely free from worrying about recurrence, especially after being hit twice. Things that seemed so inconsequential pre-cancer can now send me into an anxiety spiral of epic proportions. I’m private and hide it well, business as usual, cheery smile, but Michael KNOWS because he’s there, too. I suspect this is fairly typical of cancer survivors and their mates.

Once I passed my 5 year checkup and bone marrow biopsy, I was happily released by my transplant team permanently (unless the unthinkable happens). My plastic surgeon released me in October after some additional work on my breast reduction in September. I’m all finished there. The rest of my medical visits remain fairly constant: bi-annual bone scan, annual gynaecology with mammogram and PAP, as well as semi-annual dermatology, dental, ophthalmology, and otolaryngology. I travel to Johns Hopkins weekly for 15 minutes of UVA1 phototherapy which mostly controls my skin GvHD.

I’m supposed to see my hematologist and get blood work only every six months but something always seems to send me running to him by the 4th or 5th month. He’s the one doctor I trust totally and rely on to keep me healthy and sane. In August it was fatigue and several months with slightly elevated white count. He did a flow cytometry on my blood and determined it was reactive rather than monoclonal, most likely a byproduct of my GvHD inflammation.

Then I saw him in December because I’d had three respiratory infections in four months, each lasting a couple of weeks or more. He checked my gamma globulins, and they were ok. I’ve noticed since that there just seem to be a lot of different bugs being passed around this year. I got sick again in early March but took antibiotics right away instead of waiting and got over it much more quickly.

I was fine until mid-April, when I started having severe, deep pains in my arms and especially in my legs, worse at night. I noticed I bled more with minor cuts and bruised easily. I was determined to wait until my regular checkup in June but then woke up one day with petechiae and bruising on my legs, as well as swollen veins, and immediately scheduled an appointment. This is what prompted Michael’s last post. I was much relieved that my blood work was good other than my usual slightly elevated white count and newly elevated potassium (rechecked and in normal range this week).

We suspect most everything is related to my mild GvHD. I had been walking a lot more and doing a daily trek up and down our ridiculously steep driveway. I had also been taking a lot of naproxen (Aleve). Things have improved since I quit walking the hill and reduced my Aleve intake. I still have the pains in my limbs but not as severe. In my old pre-cancer life, I wouldn’t have thought twice about any of these minor annoyances. What has changed is Michael’s and my level of innocence about what they could portend. Most of the time, we’re pretty sure I’m fine, just ordinary aches and pains that go with aging and sedentary living but then there’s that tiny seed of doubt. I’ve never been much of a worrier by nature and don’t want to be now. But does any cancer (or other life-threatening illness) survivor ever feel quite as safe again?

I went for my regular six month checkup with otolaryngology Tuesday. Last time, back in November, we had a scare due to an enlarged level V lymph node. Michael was more frightened than I over that incident but an ultrasound confirmed that all was ok. Again, this was probably GvHD related.

This time, after doing the through-the-nose scope, and poking and prodding my mouth and tongue, she said everything looked great and suggested I should plan a huge party when I have my 5-year exam this coming November. I casually mentioned that my left ear had a sore spot that I could feel just inside at the base if I used a Q-tip (of course that’s a no-no but I am careful and never go too deep). Because of the location, it was difficult to angle the ear scope to see it but she finally located a small ulcer. She said she wasn’t worried but, “given my history….” (ah, those dreaded words), she wanted it looked at by an otologist and managed to get me a same day appointment. He wasn’t certain but said he thought it might have been a small sebaceous cyst that I scraped. The skin is so thin in that part of the ear, that a tiny spot of bone was exposed. He cleaned up the area which caused it to become actively painful instead of just sore and applied some sort of liquid bandage. I’m to keep it dry and return in a few weeks to verify it has healed properly. If not, he’ll try to do a biopsy. I told him I felt like I’d turned into a big baby, seeking medical attention over every little thing. He reassured me that I was not a baby at all, but very smart to be safe, especially “given my history.”

That’s about it for the medical update – oh, I did have cataract surgery on my right eye in November and am seeing much better. I still wear my PROSE scleral lenses and am thankful daily to have them. Without them, my quality of life would be awful. My left eye vision has not yet deteriorated enough for insurance to consider the cataract “ripe” – maybe by next winter it will be. I also need another crown on my teeth this summer. The cataract and crown are afterthoughts because they aren’t scary, at least not cancer scary.

I love being retired and a full-time crazy cat mom. We now have 8 indoor cats and another 2 half-wild ones outside in addition to the other wildlife.

Our youngest grandnephew is graduating high school in 10 days, an event I feared I’d never live to see. He was in 5th grade when I was diagnosed with MDS/AML. Life is honestly very sweet, very, very good. I suppose that’s why we worry so about the possibility of it being cut short.

As usual, when you don’t hear from us for months or more at a time, assume all is well!! We will let you know if anything happens to the contrary.

Love to all!

Karen (and Michael)

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.