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/AML 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.

Day +3594: I know you got the good feelin’…

Oct 3rd, 2020 by

”… Let’s get it, let’s get it
Gotta love the life that we livin’…”

10/3/2020: Just a quick note to let you know I’m doing fine. My bleeding stopped after Michael augmented the bandage Thursday evening. He removed the dressing last night to reveal my normal post bone marrow biopsy behind – small round wound from biopsy needle and big rash from bandage adhesives. My walking helped relieve the nerve pain in my leg. Today, I’m extra tired but all is good for the moment, and biopsy site is healing nicely. Now, we just wait and hope for good results. xoxo, Karen

Day +3592: Gloom, despair, and agony on me…

Oct 1st, 2020 by

“…Deep, dark depression, excessive misery
If it weren’t for bad luck, I’d have no luck at all
Gloom, despair, and agony on me…”


10/1/2020: Greetings from the continuing world of slightly wacky blood counts. Karen is ok; and will fill you all in on the continuing saga of the monthly monitoring adventure shortly. So, today’s episode along the path of “everything is ok, but let’s check approach” – was Bone Marrow Biopsy Number 14 ( plus or minus one). Karen was queued up for conscious sedation as lying on her belly required for the procedure is somewhat problematic when your body wants to play rounds of random whole body spasms. Best way to describe the procedure is %*$&@* painful. (Search the blog there are picture from previous ones or trust me.)

“…And all I’ve got is time until the end of time,
Well I won’t look back.
I won’t look back…”

The Hopkins Covid procedures resulted in me being banished to hide in the car in the parking garage… think they would have preferred the trunk, but let’s not get side tracked. A few hours passed and I got the text:

“I’m done with procedure. They will bring me down to where we parked”.

How did it go?

“Ok.”

The wheelchair showed up shortly thereafter, and we were on our way home. Next came the quiet comment: “She (Nurse Practitioner) hit a nerve. It happens.”

Karen described it like Sciatica, and the ride home was not pleasant. Once home, Karen tried walking around the deck for awhile and then – exhausted, she dropped into bed.

“…And when you call and need me near
Sayin’ where’d you go?…”

The napping downstairs was interrupted by a tiny voice: “Misch, I’m bleeding.”

Yup, dark red blood. Well shit, that is a new one for our biopsy game. So, a little augmentation to the hospital bandage was in order. One 4×4 and a quarter mile of paper tape! Got it. Alright, we’ll watch this carefully too. Hard to walk to ease the nerve pain and maintain constant pressure on the biopsy puncture.

“… Beat-up little seagull
On a marble stair
Tryin’ to find the ocean
Lookin’ everywhere…”

Hey, Karen is fine … fine … fine … fiiinnnne….
Just got to take easy for a few days, let the puncture heal, and sit on grenade pins a few days until the biopsy results make themselves known. Easy.

“…What’s the name of the game?
Does it mean anything to you?
What’s the name of the game?
Can you feel it the way I do?…”

Ok, since this is our blog, I threw in five sets of song lyrics.
I sincerely wish all the fellow travelers on this journey the best!!!

Note: If you’re having trouble following my ramblings and musings, just replace all the adjectives and verbs with a universal four letter word starting with ….may I have an ‘F’ please, Vanna.

Cheers,
Michael

Day +3572: I wanna write her name in the sky…

Sep 11th, 2020 by

“I’m gonna free fall out into nothin’
Gonna leave this world for awhile
Now I’m free (Free fallin’, now I’m free fallin’, now I’m)
Free fallin’ (Free fallin’, now I’m free fallin’, now I’m)…”

“Welcome to Medical Limbo,” the Devil says with a sneer.

“So you’re confused? Racked with fear, not sure an answer will lead you outta here!”

With the snap of a claw, a ruby red crystal sphere appears,
A flick of a paw, the sphere plummets down the vortex and disappears…

The mind in trance, the lungs just freeze, eyes grapple but can’t sieze.

A crystal crash echos from far below and just as sudden there is a glow…
It reappears, rising not quite so high nor does it seem so fully red,
The sphere dives again … it bleeds – you dread
Again…
Each bounce it goes lower, its journey slower…
No cracks appear, the surface is sound
It dives for another round…

It’s mesmerizing to watch its journey.

Yet, it fades each fall until only a lonely drop remains.

The Devil smiles and snatches it and stops the refrain.
“Just playing, you see. Blood work? Go down that hall.”

So, since the last update the downward trend in the blood counts has continued. It would be unfair to say our esteemed doctors are disinterested. I mean only that one really doesn’t want to be an interesting case in the world of oncology.

Karen’s hematologist recommended additional blood work and bone marrow biopsy under the purview of the transplant team. This all sounds very logical on the surface; however, it meant dealing with two medical facilities, University of Maryland and Johns Hopkins, with two doctors who don’t talk to each other. Just getting the bloodwork scheduled was a Herculean feat. Yes, Karen is looking for bone marrow biopsy #14. In short, the procedure on a good day sucks – but it can provide the most definitive answer. Getting the result of the blood work to both doctors may require re-parting of the Red Sea of Bureaucracy and probably walking the results to each doctor on a tablet. This newly ordered round of blood work was completed a couple days ago and results are trickling in. We are not willing to bet that both doctors had seen the last two sets of blood work during consults with Karen. Such is the nature of the integrated medical record. The bone marrow biopsy was rescheduled for October (a point I will address in a moment).

“Last thing I remember
I was running for the door.
I had to find the passage back to the place I was before.
‘Relax,’ said the night man…
‘We are programmed to receive.
You can check-out any time you like.
But you can never leave!’”

I was going to quote the Oncologist but decided that would be a bit unfair, and I’m positive in his mind the protocol that Karen is now meandering down is the best path forward. The list of tests include LDH, Coombs, haptoglobin, retic count, antiplatelet antibodies, flow for LGL, and chimerism. Hence, the biopsy which the CRNP had scheduled in September is being postponed until October (a birthday present I’m sure).

The other gem to highlight is the assessment that a relapse of Leukemia at the ten year mark is almost unheard of. Besides it’s only 30 days; I mean how much stress could there possibly be waiting for that little time for an indicator of where one is on the scale of: “Fine: New Normal — to — Soon to be Dead”
Now add in an exponential factor for the assessment of highly unlikely of recurrence. Each time we heard that, Fate came back to haunt us with …wow, Karen is the outlier. More bloody stress from a feel good curve ball without data.

Karen rarely voices her frustration, but I am going to quote her here:

“…He has zero empathy for the stress of being left in limbo for patients and their caregivers. We are intelligent, educated individuals who clearly understand there is not always a definitive diagnosis, and without such, no clear path for thinking about any potential treatment; however, it goes a long ways toward peace of mind to have awareness of and/or rule out various possibilities.”

Yes, we are extremely grateful to our medical and support staff professionals. Yes, we trust them with our lives; but with all the great discussions and protocols building a care and medical support team around the patient, it would be nice if now and then it was remembered that the patient is a human being. We also acknowledge that it is Tuesday – (if you haven’t picked up what this means in the running of this blog an option is to watch 15 Seasons of ER).

“And they all get put in boxes, little boxes all the same
And there’s doctors and there’s lawyers
And business executives
And they’re all made out of ticky tacky and they all look just the same…”

So one pastes on a smile to walk among the vanilla people for awhile, for we dare not share the dark we may feel for fear that for most it is far too real.

Is Karen ok? Well….

“The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind…”

Michael

p.s. from Karen: A four song post – is anyone still playing?

Day +3520: And I’ve seen my friends fall away before their time…

Jul 21st, 2020 by

“…And I’ve been afraid that I may follow in their light
So I drink and love and whisper all the things I know are right
Someday I will leave this world but maybe not tonight…”

7/21/2020: Now that Michael has entertained you with the big picture, I’ll fill in some boring medical details. Remember, boring is what we want! I’ve spent a lot of July catching up on medical appointments that had been deferred since mid-March. Results are in, equivocal but good enough for now.

Recall that my blood counts have been quite stable for the past 9 years since bone marrow transplant. In particular, my new platelet normal has been consistently 100k-150k above the standard reference range but normal for me, the persistent outlier. So when they dropped 100k between September and December, I noticed. February blood work showed another 100k drop but still within reference range. At this point, I’d ordinarily have contacted my hematologist, Dr. Bahrani, for reassurance but I also had a miserable urinary tract infection, with symptoms persisting after my urine tested clear, so decided to wait until that was resolved. A subsequent ultrasound on March 13 revealed changes in a pre-existing cyst on my right kidney. Primary care wasn’t terribly concerned because “benign cysts are common in older folks” but given my history ordered an abdominal MRI for March 20. By then, everything was pretty much locked down here due to COVID19. However, I feared the unknown more than the virus so kept my appointment. Results that should have been reassuring left me with more questions:

1. Right renal 5.5 cm Bosniak type II cyst; benign.
2. Pancreatic body 5 mm cystic lesion, suggestive of a sidebranch IPMN, without suspicious features.

WTF? A pancreas lesion!?

“Do you think it’s time that I made out my will?
I’ll leave everything to you to pay my bill
Just how long is there to go
Please tell me I want to know…”

Primary care said nothing to worry about but I looked up IPMN, and I worried: “An intraductal papillary mucinous neoplasm (IPMN) is a growth in the main pancreatic duct or one of its side branches. IPMN may be precancerous or cancerous. Depending on its location and other factors, IPMN may require surgical removal.” Now I really want to talk to Dr. Bahrani but we’re in full quarantine mode. All of my doctors had called and cancelled my appointments – they were taking emergencies only. I knew my condition wasn’t emergent. I needed to wait. COVID19 didn’t make me panic because I could avoid contact but my anxiety grew wildly as I wondered what I would do if I couldn’t get timely medical care for other issues because of the pandemic. To top it off, something totally new, my navel got infected. 🙄

Fortunately, my routine primary care appointment was only a couple of weeks later in April, accomplished via telemedicine. The doctor and I had a good talk, and she took the time to confer with the pathologist about my results and put in an order for another scan within the coming year. She also prescribed an antibiotic ointment for my belly button (it worked), estrogen cream and a urogynecology referral for ongoing vaginal and urinary discomfort, a referral to physical therapy for problems with leg and back pain, and an order for repeat blood work. The labs and referral appointments had to be postponed, and there was nothing else for me to do. My anxiety abated, and my cautious optimism returned. Michael and I enjoyed our leisure time at home, grateful that we were safe and comfortable and able to get out for daily walks in the country.

Fast forward to June blood work results…

My platelets dropped another 100k since February and were now slightly below the bottom of the normal reference range. In addition, my red blood count dropped slightly below normal, and my lymphocyte percentage was high plus a few other changes from my usual. Panic returned with a vengeance! I emailed both my transplant “farting rainbows” doctor and my trusted hematologist with copies of my results. The former replied, “All is well. I am not in the least concerned by these counts. Counts bounce around and lots of things, like viral illness, can make them go down a little. I know that once you have cancer you are always worried about it returning, but it is almost 10 years….” He always seems a bit condescending. Dr. Bahrani, however, took my concerns more seriously, “I will have the office call you and move up your appointment. It will be the first week of July as I am off until end of June. Please have hopkins fax me your MRI result.”

Michael summarized my visit with Dr. Bahrani in his post a couple of weeks ago. My counts were about the same as last month. My blood looked fine under the microscope, and my flow cytometry came back good ten days later. I’ll continue monthly labs for the next six months, hoping my counts have stabilized again. Watch and wait. We may never know what caused the drop. Such is the life of a cancer/BMT survivor. I went into the appointment fearing a death sentence and emerged on parole. Life is good once again.

xoxo, Karen

p.s. I also had a telemedicine pulmonary appointment in June plus a mammogram and two pelvic exams (urogynecology specialist and annual gynecology) first week of July. Pulmonary recommended routine LFTs (lung function tests) sometime this summer. Both gyns recommended continued use of vaginal estrogen cream and more fiber in my diet. My mammogram was good. My PAP showed atypical cells but my HPV test was negative so I’ll be retested in one year. This was a bit worrisome until I read:

Atypical squamous cells of undetermined significance (ASCUS). Squamous cells are thin and flat and grow on the surface of a healthy cervix. In the case of ASCUS, the Pap smear reveals slightly abnormal squamous cells, but the changes don’t clearly suggest that precancerous cells are present. If no high-risk viruses [HPV] are present, the abnormal cells found as a result of the test aren’t of great concern.

Don’t forget to name the two songs in this post and the three in Michael’s post!