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

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)

Day +2364: Is there anybody in there…

May 21st, 2017 by

“Just nod if you can hear me.
Is there anyone at home?
Come on now.
I hear you’re feeling down.
Well, I can ease your pain.
And get you on your feet again.”

Greetings! We just heard from a few friends that they didn’t receive notification of our recent blog postings on May 8 and May 19. I’ve attempted to fix the problem, and am posting this test, a photo of Michael and me at our Mother’s Day family gathering last weekend. The weather cooperated, and we had a dozen people including ourselves, a very pleasant day, despite missing my mom.

Michael and Karen

Have a great summer!

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)