Day +3287: And all I ever needed was the one…

Nov 30th, 2019 by

“Like freedom fields where wild horses run
When stars collide like you and I
No shadows block the sun
You’re all I’ve ever needed
Babe, you’re the one…”

11/30/2019 I cannot let this rebirthday end without many thanks to my DNA sister, Mary Lou, for whom I’m enormously grateful every day. Without the precious gift of her healthy bone marrow 9 years ago, I would not be alive today. Now and always, she’s literally a part of me.

Much love, Karen

Day +2996: I know all there is to know about waiting…

Feb 12th, 2019 by

“Never mind a quick disintegration
Wind will carry you just like a leaf
Like a guide that’s broken captive from a string
So much to remember when the day ends
So much to forget when you’re afraid
After all the troubles and the breakage
I know all there is to know about waiting
Waiting, waiting, waiting….”

2/12/2019: Last week’s biopsy went smoothly – 5:30am arrival, 7:30am procedure, home by 11am, comfortably medicated and with instructions that included soft diet for two weeks. According to Michael, my surgeon was very happy afterwards. She thought everything looked good although there was a “mysterious blood spot” so she took an extra sample. And then, as usual, we waited…trying to remain optimistic for that difficult space in between biopsy and results.

Happily, we didn’t have to wait too long, just six days. Better still, all results are benign:

INTERPRETATION AND DIAGNOSIS: (lmr) 02/07/2019 @ 07:37 pm
1. RIGHT BASE OF TONGUE (BIOPSY): BENIGN SQUAMOUS MUCOSA WITH NECROTIZING SIALOMETAPLASIA AND FIBROSIS.

Since we had no clue what this meant beyond that all important word BENIGN, some quick research revealed:

Necrotizing sialometaplasia (NS) is a rare benign, ulcerative lesion, usually located towards the back of the hard palate. It is thought to be caused by ischemic necrosis (death of tissue due to lack of blood supply) of minor salivary glands in response to trauma. Often painless, the condition is self-limiting and should heal in 6–10 weeks. It occurs more often in men in the fourth decade of life. Although entirely benign and requiring no treatment, due to its similar appearance to oral cancer, it is sometimes misdiagnosed as malignant. Therefore, it is considered an important condition, despite its rarity.

We had a good laugh as soon as we saw RARE – yep, I’m still the outlier. We strongly suspect a connection with ongoing GvHD.

I close with another tagline, dedicated to Michael who has undoubtedly suffered way more than I have through this recent branch in our continuing journey.

“You’re the meaning in my life
You’re the inspiration
Wanna have you near me
I wanna have you hear me saying
No one needs you more
Than I need you…”

Love to all,
Karen

p.s. Next post will be tag line identification for this and several previous posts. Get your guesses in now.

Day +2988: The odds get even – you name the game…

Feb 4th, 2019 by

“The odds get even – the stakes are the same…
You bet your life…”

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If one were watching the documentary of life, this Episode is narrated by Marlin Perkins:

‘Here we see Jim wrestling with the lion, Maya, so that she could be safely relocated to the game preserve. Ouch! Those claws are sharp! Poor Jim! He quickly pulls one the three syringes of tranquilizer and expertly aims. Jim[Karen] injects the tranquilizer[antibiotic] in the jaws of the wily beast [Persian] Maya. She escapes and bounds across the savanna of the living room and launches behind the recliner! Ouch! Karen? Ouch?’

This existential moment of feline care is rudely interrupted by Fate and another toss of the dice.  Cut to commercial.

‘Budweiser not only makes great beer but also great Superbowl commercials.’

[Commentator] ‘One of those may be correct.’

Change channel – Cool, an episode of ER on at 3:00 PM

Karen and Michael are driving down 95 towards Baltimore.
Karen looks calm enjoying the sunshine – Sunday traffic is very light.
They turn left to park in the garage across the street and head to the 4th floor walkway over Orleans Street.
Karen stops midway and takes a couple of pictures of the hospital and traffic below.
The admissions clerk is friendly and polite, the process goes smoothly. All of the records are there already; within moments, it is on to triage.

‘What brings you in today?’
Karen with a smile: ‘High spiking blood pressure, dizziness.’

[Nurse for BP, Bloodwork, EKG, CT scan….second review with PA, back out front to the general waiting area.]

< Cut to Super Bowl Pre-game show >
< Cut to ER waiting room: daytime drama – the People Watching Show >
< Cut to National Anthem >
< Cut to three hour vital signs check >
< Cut to ER waiting room: nighttime drama – the People Watching Show Season II >
< Cut to Super Bowl halftime show overlaid with People watching Show Reruns and two identical sound tracks with a 2.5 second delay betw..betwee…between them >
< Cut to the starving wife/patient – brought to you by Subway roast beef sandwiches for your emergency needs >
< Cut to Michael wolfing down a pepperoni pizza in the main hospital >

‘Karen give me that remote / call button.’

< Room 29. 9 PM. Gown, socks, heart monitor – check. >
< Room 29. 9:30 PM. Vitals … 192 over 94. >
< Room 29. Buzz nurse. ( Ok audience, you go to the bathroom with a heart monitor! )>
< Room 29. Chair and pillow acquired!>
< Room 29. Episode 2. The exam! >
< Here we see the intense young resident doctor, Nick, asking probing questions about Karen’s medical history, recounting the current episode, and trying to be unobtrusive about checking for signs of stroke.>
< Karen politely counters with a few select questions about BPs, causes, symptoms, blood clots, and other coffee room chatter, and a good time is had by all.>
Nick states the asymptomatic nature of high blood pressure except in extremely rare cases cancer of the adrenal gland that may manifest in a high BP. ‘Highly unlikely.’
< Cut to hysterical laughter from Michael and a short discussion of the curse of Mausi’s (Karen’s) Medical Mathematical Mayhem >
< Nick would like to do work in the international community and has a keen interest in music, and stroke and heart attack are ruled out.>
< Cut to Super Bowl victory celebration >
‘Ok, ready to go back to the bathroom, yup I unplugged the monitor wait I need to take the saline too! ‘
< 00:30 AM BP 146/72 … cool >
< Room 29. Episode 3. The exam! Supervising Doctor (Play episode 1 for details) >
‘Did you get his picture?’
‘Nope, busy playing Legendary’
< Room 29. Episode 4. The underachiever exam >
‘So a critical point for your age is a BP of 150 over 90; however, we would not force a decrease in blood pressure unless there were signs of major organ damage.’
‘I’ll provide you a referral and then we will see if we can get you out of here.’
Karen asks if Michael got her picture.
‘Yes’
< Cut to a very somber Dr. Nick >
Nick asks ‘What did they tell you?’ Karen looks alarmed. ‘What do you mean…’
‘I mean it is all good news’

< Cut to the wild Maya >
Maya is picking at her food, but eating.

Karen is exhausted … the Hopkins protocol for treating patients with neurological symptoms is a nine hour phased approach with EKG/Vitals/Blood collection at the three hour marks.
We are home after an 11 hour dance at the ER.

< Cut …Hey the Twilight Zone is on 6 February >

Here is the preview:

< Rod Serling announces the recap of our last episode of  “You get all of this and new normal, too.”

< Recap of last month’s spine tingling highlights >

< Last Month: John Hopkins Outpatient Center, 6th Floor >
Christine manipulating the scope in Karen’s nose to highlight the area of the small ulcer, explaining to Michael that it is probably caused by her viral URI or reflux and nothing to worry about.
Christine and Karen chat about the ragdolls, and ‘if it still bothers you in a month, come back’

< Last Week: Tuesday, John Hopkins Outpatient Center, 6th Floor>
Young resident inquires ‘is it better’
‘No, but it is different.’
‘So it is worse.’
‘No, just different.’
‘But is it better or worse?’
‘Neither, just different.’
Christine zooms in on the right side near the base of tongue after Karen explained about nerve pain and general soreness originating from that area.
‘Looks a little enlarged’
Speaking matter of factly – ‘doesn’t look like cancer’
< Karen and Christine chat a bit and the path is determined: Schedule an MRI. >
On the way out, ‘For good measure, let’s do a biopsy under sedation…’

< Wednesday, Phototherapy as usual, with intermittent scheduling calls >

< 11 PM Friday, MRI finished, Pre-op done, Time for the Weekend and a little relaxation!>

< This ends this broadcast >

Everything is routine; the worry and fears are quick to jump out ahead of any confirmations. The hard part is not getting a diagnosis…diagnoses come with plans. The waiting and not knowing is the hardest.

In the meantime, day at a time, moment at a time.

Karen and the cat crew are relaxing at home.

Sidenote: Karen and I joke about some of our medical staff being underachievers, meaning they are top performers in their field, and perfection seems to come easily.

~Michael

This ER visit was in sharp contrast to Day +1806 at Upper Chesapeake. Everyone at Johns Hopkins was incredibly kind and sympathetic, professional but friendly, and extremely thorough.

p.s. Maya is very easy to medicate, never fights it and is too old and slow to get away.

“Anarchist reactionary running dog revisionist
Hindu muslim catholic creation / evolutionist
Rational romantic mystic cynical idealist
Minimal expressionist post-modern neo-symbolist
Arm chair rocket scientist graffiti existentialist
Deconstruction primitive performance photo realist
Be-bop or a one drop or a hip hop lite pop metallist
Gold adult contemporary urban country capitalist…”

~Karen

Day +2939: You and me…

Dec 17th, 2018 by

December 17, 2018: Feeling especially happy and grateful today. This is one of my favorite scenes and songs from my favorite movie with three of my favorite actors. It makes me think of two of my favorite people in my real life. Can you identify all of these?

Day +2924: First you get hurt, then you feel sorry…

Dec 2nd, 2018 by

“There comes a time in a short life…

Turn it around, get a rewrite…”

This entry was actually written on Karen’s 8th rebirthday, 30 Nov 2018, where she expressed in simple eloquent form her gratefulness to be alive. And that is the overarching message – enjoy each day with eyes open.

I don’t know if any other travelers actually still look at the blog but that in itself is really not important – it is intended to remind Karen and me of the journey.

  • We are not at the edge of crisis waiting to see if engraftment is going to occur while watching the blood counts plummet and disappear.
  • We are not hitting trigger for the next measure of dilaudid to suspend reality while mucositis ravishes the entire digestive system – tip to tail.
  • We are not enthusiastic about having the energy to go the bathroom – sort of on your own or celebrating the victory of swallowing a mouthful of ice water.

For those travelers at the start of this journey…

  • We wish you the best that science can offer – take the damn meds! Live to be a hero tomorrow!
  • Let family, friends, or strangers comfort and take care of you – but you know you best!
  • May your inner strength, Karma, faith, the Sunday comics, and luck sustain you! In the fight for your life, anything that adds a measure of hope is a win – fears require no coaching.

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But…

  • when the counts finally pick up and seconds cease being eons…
  • when the scrutiny of doctors and nurses weans from minutes to hours…
  • and the next visit and (blood) draw changes from hours to days then eventually weeks…

Congratulations, you are a survivor! – now, the journey to [new] normalcy begins again…

“Ch-ch-ch-ch-changes

Turn and face the strange

Ch-ch-changes

There’s gonna have to be a different (wo)man…

Time may change me…”

At the five year mark, you’re statistically branded “cured”.
The masks and gloves are all in the trash now – except for the box in the back of the cupboard. The sanitizer is around the house, but no longer is every visitor doused with it upon entry. The day to day routines are reestablished – back to work, to back doing what it is you do. Family, friends, coworkers, and the mass of humanity find comfort in “you’re cured” … Normalcy.

In the world of transplants, medical experimentation and drugs … the procedures from five years ago (or more) – whole marrow, T-Cell, haploid, radiation, induction chemo, radioactive antigens, Cytoxan, Fludarabine, Vidaza – may be suddenly archaic; however, no matter the nature of the treatments and cure which allows the celebration of another day – life, there is a price, and it is often only known or felt by you.

“So if you’re mad, get mad, don’t hold it all inside,

Come on and talk to me now.

Hey there, what you got to hide?

I get angry too, well, I’m alive like you.

When you’re standing at the cross roads,

And don’t know which path to choose,

Let me come along, ’cause even if you’re wrong …”

Acute – Chronic
Emotional – Physical
Side effects

Labels we hang on to define the new normal you?
You’re healthy, mentally agile, strong, working, loving, living!
After all you’re cured!

You climbed five flight of stairs on the way to the show or ran miles last week.
You can’t get out of bed? Lazy!
You chatted with friends, debated the merits of this or that – your mind racing with the possibilities.
Now you sneeze and freeze? Panic? Really?
The family wants supper, the pets need food… you only think of yourself – just rude!
The spouse, friend or acquaintance spout about the trauma of the hangnail of the day…
You just want to scream and tell them to go away? Selfish!

Ok – maybe the poetic license above needs review, but…
Waltzing away from the brink of destruction does leave its marks. The positive ones – like being alive – are easier to accept and deal with.

“I’m only human after all…
Don’t put your blame on me
.
Don’t put your blame on me.
Take a look in the mirror

And what do you see…”

You survived a transplant which at the genetic level is a sledgehammer treatment with a little eternal stray voltage sparking around from chemo and/or radiation (Karen lucked out skipping radiation, but got extra chemo), and few side effects from the sustaining good medications (never read their brochures). Then it was time to train this baby immune system and watch it hum…Whoa! Graft versus Host Disease (GvHD)?!? – better slow this baby down a little…

Dry skin, dry eyes, dry mouth, digestive sensitivity, just little pin pricks to the liver and lungs.
But you roll this into the new normal and routine of the day.
Can’t freeze in panic – can’t live life that way.
Spams, hot/cold flashes, neuropathy, photosensitivity – the roll of the dice – what will it be (today)?

The perception of health is shaky – you’ve got a cause and a right to worried – to be a little paranoid about routine illness; symptoms mask symptoms after all. Your boogeyman came out from the shadows and will never really go way again… Colds linger longer and flu strikes fear to the core – the problem is to keep immune system on target and not on overdrive, survive.

So you go to the doctor to keep tabs on your system, to get the reassurance of the day – the problem is they can’t look past the parts and pieces to everything else that is at play.

Some days putting two thoughts together is a challenge; the recall fuzzy – it’s ok. Chemo brain is ever present. A random trigger rules the moment and the mind – the body may seem suspended in time. These is no reason, logic or predicting when it may appear.

The hair is gone. The skin is splotched. Sex? Tears can’t fall; and all of this and more is the new normal after all.

So, the point is that your world has changed, and at times it is ok to feel scared, angry, emotional, selfish, tired or crazy without reason, cause, justification or apology. You pick yourself up, put on a face for the world and live your new normal and manage to smile and enjoy life.

Everybody is different. It is a thing that amazes and scares me a little in the perspective of all cancer. In my non-medical mind, it is the most individualistic and incestuous disease that attacks a person at the core fabric of what makes them human.

So, again we are thankful for life. Karen mostly can do what she chooses to do; but the point of this little motivational blog entry (note: sarcasm) was that the complex treatments and methods, doctors, donor, and staff which facilitate a cure are hailed and highlighted by the world (rightfully so) – unfortunately the post treatment concerns and issues are all too often relegated to the unsexy research closet in the basement or left to the patient to deal with on their own.

“What would touch me deeper…

Tears that fall from eyes that only cry?

Would it touch you deeper…

Than tears that fall from eyes…

That know why?…”

In tradition, there are song lyrics in our Blog entries. Sometimes they capture the mood better than the narration.

Best wishes to all the travelers.
Michael