Day +3619: There’s been a lot of pressure building…

Oct 28th, 2020 by

”…Clouds dark and static
From the silence you might never tell
But we’re in for a drama
Sci-clone…”

10/28/2020: I finally updated the Cytogenetics page today. The image above is a normal female human karyotype. More than three or four abnormalities are considered complex. My nine are discussed on the updated page. Complex karyotype indeed! 😱

Tag Line Update

Also, it’s been awhile since I did a tag line update. Except for the few otherwise noted, all remained unidentified by our readers.

  • Day +3400: Tag You’re It by Melanie Martinez (2015)
  • Day +3480: Back on the Chain Gang by the Pretenders (1982)
  • Day +3506: Insensitive by Jann Arden (1994)
    …Limbo Rock by Chubby Checker (1962)
    …Beds are Burning by Midnight Oil (1987)
  • Day +3520: One Less Day (Dying Young) by Rob Thomas (2019)
    …Doctor, Doctor by The Who (1967)
  • Day +3572: Free Fallin’ by Tom Petty (1989) IDed by Heather
    …Hotel California by the Eagles (1977) IDed by Heather
    …Little Boxes by Malvina Reynolds (1962) partial credit to Heather who recognized it as used for the Weeds theme song
    …Blowin’ in the Wind by Bob Dylan (1962)IDed by Heather
  • Day +3592: Gloom Despair and Aginy on Me by Buck Owens (1969)
    …Heaven Can Wait by Meat Loaf (1977)
    …Brother by NEEDTOBREATHE (2015)
    …Baltimore by Randy Newman (1977)
    …The Name of the Game by ABBA (1977)
  • Day +3594: I know you got the good feelin’… – Good Feeling by Flo Rida (2011) IDed by Dave
  • Day +3603: Just another Day by Oingo Boingo (1985) IDed by Dave
  • Poison by With Confidence (2017)
  • Day +3612: Poison by Beyoncé (2009)
    …He Ain’t Heavy, He’s My Brother by Kelly Gordon (1969)
    …Just Give Me A Reason by P!nk (2013)
  • Day +3615: The Time Warp from Rocky Horror Picture Show (1973)
    …OK Not to be OK by Marshmello and Demi Lovato (2020)
    …There Only Was One Choice by Harry Chapin (1977)
    …The Bones by Maren Morris (2019)
    …Brand New Key by Melanie (1971) IDed by Cathy and Dana

Day +3615: It’s astounding, time is fleeting…

Oct 24th, 2020 by

“… Madness takes its toll
But listen closely, not for very much longer
I’ve got to keep control …”

Chemo Cycle One completed – well, the doses of tactical poison have been injected into Karen’s stomach region. She calls it bee stings; well, maybe bloody Yellow Jackets – certainly ain’t no honey there. I simply tend to think of it similar to rabies treatments – well, the outcome is just as iffy for the moment. (Note 2: 93.6% of you noble readers just ran off for cover – that’s ok). The other 21 Vidaza cycles, both prior and post transplant, are like primordial swamp water oozing under the bridge, not totally irrelevant as the marvels of modern medicine mix in the minefield of human genetics spiked by a legacy of potential traps doors left by our friends Fludarabine, Busulfan and Cyclophosphamide (Cytoxan) during the transplant. Yes, the bleeding edge of science has advanced in phenomenal ways, but at times it also makes the gaps in the knowledge that much more frightening.

Me (Confined to parking lot) – “How are today’s counts?”
Mausi (Karen) – “CBC in – dropped a bit but not horribly”
Me – Scans text. Nucleated RBC 2.3 to 3.9. WTF a 58% increase in the “bad”.
Me – “Ok” Math pukes are like that.

The patient is ok. Joy be to the new normal of the day. Hmmm… really..?

“…It’s Okay Not To Be Okay
Feeling Like Your Life’s An Illusion
And Lately You’re Secluded
Thinking You’ll Never Get Your Chance…”

The water tastes metallic. Food – well, we ain’t mixin’ the force feeding milk / ice cream concoctions; but none of the food is right either or really appetizing. Energy running at a fantastic Two on a scale of Ten and Endurance controlled by a moment by moment by random number generator (obtuse?) – well it evaporates randomly; (better?) Sleep sucks as the all the joys, aches, pains and spasms of the Graft versus Host Disease issues haven’t disappeared just because of the relapse.
Relapse … Relapse… Relapse …Relapse … (Note 3: George Carlin could have had a 30 minute monolog on that word choice ( He was that comedian who did the thing about 7 words you couldn’t say on television in ancient times ) …Relapse …Fucking CANCER ..ok, I feel better.

Wait, won’t next week – week two be better; well actually probably worse. Counts tend to fall before rebounding. Bet on week three and four before the cycle repeats.

“… And I can’t help being frightened on these midnight afternoons
When I ask the loaded questions — Why does winter come so soon?…”

Quality of Life … well, kids that only means something to each one of us in our own terms. No generic application of standards will ever suffice or define this adequately. The drawback of entering a blog at the point of transplant, is that it glosses over the hard decisions of prior months – during that chemo phase. Timewarp. Is Vidaza working? How long will it work? The transplant can kill you, the transplant can cure you, where is a transplant in the equation now …wait, wait, – let’s give Vidaza a shot. TBD. The hematologist ponders which is a phenomenal plus; since the transplant team is MIA at this time. It’s just a nightmare go back to sleep love.

The patient is ok. Joy be to the new normal of the day. Hmmm… really..?

“….Yeah, the paint could peel, the glass could shatter
Let it break ’cause you and I remain the same
When there ain’t a crack in the foundation
Baby, I know any storm we’re facing…”

Moment by moment, step by step she perseveres. A smile for the staff.
Pool the energy together …let the phone ring an extra moment, then answer with the friendly “Hello World”.

Hide the tears, hide the fears, never show the toll on the body or the soul.

The patient is ok. Joy be to the new normal of the day. Hmmm… so….?

“….Well, I got a brand new pair of roller skates
You got a brand new key
I think that we should get together and try them out you see…”

So, if the mood or flavor of each blog eludes you, The key is often in the the song lyrics or title of the song that accent each section. Sometimes a song does get repeated. Live with it.

The patient is ok. Joy be to the new normal of the day.
….and she will make this entry pretty and correct, too.

Michael (Note 1: The cheery happy go lucky one – but you already knew this)
EOT

Day +3612: Slowly moving through my system…

Oct 21st, 2020 by

“…Breaking all of my defenses with time
You’re just like poison and I just don’t get it
How can something so deadly feel so right?
I’m not sure of what to do it’s a catch 22
cause the cure is found in you I don’t want it but I do
You’re just like poison…”

10/21/2020: Vidaza Cycle #1 (#22 counting prior treatments), day #3. I’m exhausted and am up to 9 “bee stings” on my belly but otherwise doing well. We decided to go for a walk afterwards but went only a short distance before I changed my mind, too tired to go further.

I saw my hematologist (Dr. B) briefly today, such a pleasant contrast to my transplant doc (Dr. J). We didn’t talk long since we’d already covered most everything via email and telephone. If Dr. B had a theme song, I imagine these as his words:

”So on we go
His[Her] welfare is of my concern
No burden is s/he to bear
We’ll get there…“

He’s kind and concerned and he ALWAYS asks how I’m feeling. He answers honestly any question I ask and never takes offense if I question his answers. He takes my concerns seriously. He’s up to date on research and an excellent physician in every respect.

On the other hand, a dialog with Dr. J. would go more like this:

Him – “I’m sorry I don’t understand where all of this is coming from. I thought that we were fine…Your head is running wild again and it’s all in your mind…”
Me – ”(Yeah, but this is happenin’)”

Enough said.

So, our next step is to determine the effectiveness of the Vidaza this time around before making further treatment plans. That will probably take 2-4 months. I’ll let you know if anything changes.

I finally got a copy of my cytogenetics report that confirmed the relapse. It appears I have all of the original complex issues plus some new chromosome abnormalities on 2 out of the 20 cells analyzed. The left sidebar Cytogenetics link is updated with specifics.

In the meantime, you have three more songs to identify from this post. 😉

xoxo, Karen

Day +3610: Is this poison?

Oct 19th, 2020 by

“(Are you where you want to be?)
Is this poison?
(Is it everything you need?)
Is this poison?
(Are you where you want to be?)
Is this poison?…”

10/19/2020: I restarted Vidaza treatments today, a familiar procedure for me after 11 cycles pre-transplant and 10 more post-transplant. Everything was pretty much the same as I remembered from 9 years ago. Only one of the same nurses is still there, Judy (my favorite). After check-in, tech Larry drew my blood and checked my weight and height for proper chemo dosage. He escorted me to my curtained chemo cubicle and fetched me a glass of water.

Nurse Jamie then talked to me at length about the treatments, what to expect, what to do. She was a great listener, too. My blood counts will decrease further before they start to increase; therefore, I need to be even more vigilant about avoiding infections and seeking medical attention soon if I spike a fever of 100+. After my first cycle in 2010, I contracted RSV pneumonia and wound up in University of Maryland Medical Center for Valentine’s Day…ah those romantic memories. I know the routine this time. “Expect to feel worse before you start to get better.” Covid-19 is already keeping me way more isolated than the first time around.

Jamie brought me lunch. My treatment nurse, Lisa, arrived while I ate and asked lots of questions about current allergies and medications. I added my recently acquired medical cannabis (now legal in Maryland) to the list of current drugs. Blood work results came back quickly. I was happy to see my platelets were up from 3 weeks ago and everything else had declined only slightly. As usual, my metabolics (CMP) were great. I was given 16mg Zofran for nausea prophylaxis, and the order entered for chemo prep.

After about 20 minutes, Lisa returned with 3 syringes (one more than prior cycles but the protocol changed so there’s less in each injection). All of the injections go into my belly flab – luckily I have plenty so it’s easy, and there’s generous space for the week’s total of 15 😃. #1 flowed back out a bit, #2 was without incident, and #3 bled a little, all in all quick and easy as well as practically painless. All done until tomorrow’s repeat. I was there about two hours. Tomorrow will be quicker, no blood work or preliminary interview.

I’m feeling well and enjoyed dinner plus ice cream nausea free. My injection sites are a little warm and swollen like bee stings. Based on prior experience, I’ll probably start to actually feel the chemo effects (especially fatigue) later this week and most of next. I’ll post again after I meet with my hematologist Wednesday but other than that, you can assume all is proceeding as expected if you don’t hear from me.

xoxo, Karen

Day +3603: I feel it all around…

Oct 12th, 2020 by

”I feel it in my bones…
My life is on the line
When I’m away from home
When I step out the door
The jungle is alive
I do not trust my ears
I don’t believe my eyes
I will not fall in love—I cannot risk the bet
‘Cause hearts are fragile toys—so easy to forget

It’s just another day
There’s murder in the air
It drags me when I walk
I smell it everywhere
It’s just another day
Where people cling to light
To drive away the fear
That comes with every night

It’s just another day…. It’s just another day
It’s just another day…. It’s just another day….
It’s just another day when people wake from dreams
The voices in their ears that will not go away

I had a dream last night:
The world was set on fire
And everywhere I ran
There wasn’t any water
The temperature increased
The sky was crimson red
The clouds turned into smoke
And everyone was dead

(But)
There’s a smile on my face…for everyone
There’s a golden coin…that reflects the sun
There’s a lonely place…that’s always cold
There’s a place in the stars…for when you get old

There’s razors in my bed
That come out late at night
They always disappear
Before the morning light
I’m dreaming again
Of life underground
It doesn’t ever move
It doesn’t make a sound
And just when I think—that things are in their place
The heavens are secure—the whole thing explodes in my face.

It’s just another day…. It’s just another day
It’s just another day…. It’s just another day….”

10/12/2020: Awakened by the phone this morning, results are in from my bone marrow biopsy. It appears my MDS has relapsed with the same complex cytogenetic abnormalities as before. I don’t have much additional information yet. My transplant team feels that they’ve caught it early and that the best course forward for now is Vidaza (azacitidine), the cytotoxic chemotherapy drug that put me into remission first time around. They don’t recommend a donor lymphocyte infusion (DLI) at this time due to my ongoing cGvHD (chronic Graft vs. Host Disease). Michael and I are still processing everything mentally. I scheduled an appointment with my hematologist for October 21, and we will keep you posted as we know more. Until then, daily ice cream!

Love to all, Karen

p.s. A single tag line song with full lyrics. Who can identify?
p.p.s. Just got a call from hematologist – Vidaza treatments start next Monday.