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

“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

5 Comments so far

  1. Dear Karen and Michael,

    Thank you for chronicling your story in such detail on your blog for many years, a wonderful thing!

    You never know when one little detail will make someone else pay attention to something that they should, while the doctor’s are focused on larger issues. Always be your own advocate.

    Here is to a wonderful 8th rebirthday!!!

    Lots of love this year and the next, and the next, and the next …
    Debbie

  2. Deborah Wade on December 2nd, 2018 at 11:55 pm
  3. Thank you for posting this, for saying all the things I would not allow myself to say but needed saying nonetheless. I love you.

  4. Karen on December 3rd, 2018 at 12:17 am
  5. Michael, you and Karen have traveled a road that we can not imagine nor care to explore. Thank you is offen used flippingly and an inadequate expression of what you have walked with my dear cousin so I will just hold the two of you in my heart. Linda

  6. Linda Pourchot on December 3rd, 2018 at 7:12 am
  7. What writers you both are!
    I got Bowie and r.u.s.h
    you often wonder why people say NO to a cure and your 5 year journey
    That you so eloquently write about is mind boggling to a bystander as to how
    You dealt with it all. I know the answer was one day at a time. One issue at a time. One doctor at a time but Christ! One question, did your taste buds ever come back to where you loved the foods you use to love?
    Hope you both have a wonderfully new normal holiday! Love you guys

  8. Dana on December 3rd, 2018 at 4:58 pm
  9. Thank you for your friendship all of these years. Thank you for your candor.

    I keep you both in mind often through the work I do.

  10. Heather on December 3rd, 2018 at 5:16 pm

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