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!

Day +3506: How do you slow your blood…

Jul 7th, 2020 by

“The expression on your face that told me
Maybe you might have some advice to give…”

Stats are a lot like statistics. If that leaves you a little puzzled, that’s ok; this blog entry is by Michael. There, the disclaimer out of the way.

After the bone marrow transplant (BMT), Karen’s blood counts never really did level out to what would be technically normal for the statistically average person. But as you might remember from almost ten years back, having counts for reds, whites and platelets at all is a bit miraculous (insert George Carlin with a Buddy Christ here). The counts, although a bit A. B. Normal, settled into a comfortably predictable pattern. Periodic blood work would always receive a gold star by the doctors or techs delivered with that “A Okay” smile. Any indicator of this or that being marked H or L (high or low), was professionally examined and declared ok for you too! All right the platelets are bit tiny and over-plentiful, too. Yes, a bit of generalization, since nobody is interested in the …cytes or …phils….; but I digress.

We often talked that once life runs over you with a bus with cancer in the driver’s seat, the illusion of immortality is crushed. Karen and others continue on, but as a survivor, the walk down the sunny road of life is forever draped in the shadows of uncertainty. So little things like periodic blood counts do more that indicate a state of current health. They provide a little emotional boost and reassurance to face the rest of the world and those trivial nuisances that a BMT presents along with the gift of life.

So Karen, yes you know her, the computer scientist and mathematician. Well she studies her blood work in detail – all patients should; but that math gene also causes her to track trends and here is where a bit of anxiety popped up. About six months ago the counts started trending downward still within the “ok” range. A consult with the Transplant doctor went as predictable – you’re ok! No worries! Don’t misunderstand, we have great faith in his technical expertise; but farting rainbows and roses seem be a “bedside manner” flaw in his patient interactions. The counts are mostly normal, but have been dropping unexpectly? What does that mean? Hey, you’re ok!

“…Limbo lower now..
…Limbo lower now…
…How low can you go?…”

It’s the human thing; uncertainty results in the mind latching onto the worst possible scenario – relapse or for a twist, Lymphoma. Ok, that was me.

Karen, on the other hand, called her hematologist and her routine appointment was moved from August to today. Karen spent an hour with her hematologist. Simply, he is a straight shooter. We trust him implicitly, but Karen still makes him explain the whats and whys of his diagnosis. Blood work check. Cells scanned under the microscope. Flow cytometry panel pending …I hate waiting.

“…. How do we sleep
While our beds are burning…”


“…How can we dance
…When our earth is turning…
…How do we sleep…
…While our beds are burning..”

How to eat a chocolate covered cockroach, oops wrong chapter.

So, why not cancer? Because if it was a relapse your counts would have tanked. What is causing the downward trend? Could be a myriad of things. Ok, so going to do monthly bloodwork for awhile again and see if this is just a switchback in the road.

If you find this a little less than reassuring remember it’s Tuesday.

Karen perseveres. She is ok.

Sometimes this is as good as it gets.
Michael

p.s. As usual, three songs for you to name.

Day +3480: What hijacked my world that night…

Jun 10th, 2020 by

“To a place in the past
We’ve been cast out of? oh oh oh oh
Now we’re back in the fight
We’re back on the train
Oh, back on the chain gang…
A circumstance beyond our control, oh oh oh oh
The phone, the tv and the news of the world
Got in the house like a pigeon from hell, oh oh oh oh
Threw sand in our eyes and descended like flies
Put us back on the train
Oh, back on the chain gang….”

6/10/20: My first encounter with the outside world in nearly 3 months happened today, a blood draw for CMP and CBC. I was fine going in, masked and sanitized. Coming out, I felt inexplicably sad, not even sure why. I went to the nearer White Marsh lab instead of my usual Express Testing lab at East Baltimore Hopkins. I missed the busy but friendly staff. I don’t know if it was location or masks or Covid-19 but today seemed very cold and impersonal, only two staff members and 3 other patients, no friendly exchanges. With the temperature in the 90s, I gained new sympathy for people who object to wearing masks for extended periods. It was very uncomfortable even though I wholeheartedly support the directives to continue wearing them until we all can feel more reassured about not catching the virus or perhaps worse, unknowingly transmitting it to others.

I am filled with compassion for everyone who has suffered illness, social isolation, financial disaster, or any of the myriad of other life changes that came so abruptly and unexpectedly upon us. However, although initially racked with crippling anxiety over the potential of not being able to get any needed medical attention due to the pandemic, the past couple of months, I settled into a new reality where my life felt very safe and normal, not plagued by waiting for results from my next scan or blood work, not wondering if I’ve relapsed or have developed some new scary condition. Just enjoying my “boring” pre-cancer life, sleeping when tired, waking when I want, eating on my own schedule, working on my photo journaling, enjoying the kitties and wildlife, daily walks, just BEING. We’re extremely fortunate that, so far, we haven’t been impacted in any major negative way medically, financially, socially, or otherwise. Too many others have not been so lucky.

So misfit that I am, while the rest of the world rejoices at re-entering society, I was in tears (figuratively since I can’t produce real tears anymore) by the time I emerged from the lab. I longed for my pre-cancer life from 11 years ago that I ironically glimpsed again due to the quarantine, possibly even better now because I’m retired and have Michael, now happily retired, to share it. And the newer normal post-pandemic reality seems harsher and scarier than my prior new normal that I thought I’d adapted to reasonably well. This, too, shall pass…right?

I’m resilient and a late blooming optimist so soon cheered by the simple act of stopping at a nursery and heading back home with the car overflowing with flowers as well as fresh tomatoes and strawberries. I’m back in my comfy recliner eating fudge brownie Ben and Jerry’s, watching our groundhog contentedly crunching dog food. Our cats are purring. Michael is playing on his iPad while munching a sandwich. We have no appointments until next Tuesday.

Life is good.

xoxo
Karen

Day +3400: Tag, you’re it, tag tag, you’re it…

Mar 22nd, 2020 by

3/22/2020: Time for a long overdue tag line update!

(not IDed unless otherwise noted)

  • Day +2375: Hot Legs by Rod Stewart (1977)
  • Day +2548: I’m Free by The Who (1969) (IDed by Deb)
  • Day +2562: Ordinary World by Duran Duran (1993)(IDed by Chris)
    …Bohemian Rhapsody by Queen (1975) (IDed by Chris and Leslie)
    …Two Fine People by Cat Stevens (1975) (IDed by Leslie)
  • Day +2624: We Are Alive by Bruce Springsteen (2012) (IDed by Michael)
    …The Highwayman by Jimmy Webb (1977)
  • Day +2812: Where Have All the Flowers Gone by Pete Seeger (1955)
    …Arkansas Traveler by Michelle Shocked (1992)
    …Guardian by Alanis Morissette (2012)
  • Day +2886: When I’m 64 by The Beatles (1967) (IDed by Deb, Dana, and Heather)
    …Blue for You by Men at Work (1983)
    …Happy Birthday by Patty and Mildred J. Hill (1893)
  • Day +2922: Handlebars by The Flobots (2008) (IDed by Cathy)
  • Day +2924: First by Cold War Kids (2014)
    …Changes by David Bowie (1972) (IDed by Dana)
    …I’ll Stand By You by The Pretenders (1994)
    …Human by Rag’n’Bone Man (2016)
    …Tears by Rush (1976) (IDed by Dana)
  • Day +2939: You and Me by Henry Mancini (sung by Julie Andrews and Robert Preston in Victor/Victoria (1982) (IDed by Chris and Dana)
  • Day +2988: You Bet Your Life by Rush (1991)
  • Day +2996: All About Waiting by Dhani Harrison (2017)
    …You’re the Inspiration by Chicago (1984) (IDed by Chris)
  • Day +3287: The One by Elton John (1992)
  • Day +3368: Pirelli’s Miracle Elixir by Stephen Sondheim (from the musical Sweeney Todd: The Demon Barber of Fleet Street) (1979)
    …911 by Cyndi Lauper (1986) (IDed by Dana)
    …Wild World by Cat Stevens (1971)
  • Day +3399: Memories by Maroon 5 (2019)