Home sweet home


5 days in the hospital – most of them just boring

We’re home now from hospital stay #2. Five days this time, which began from a massively low (3.4, then 4.0) hemoglobin count. So low, that as he stepped from the car to the oncology office’s door, Kevin collapsed on the pavement. I and two guys helped him up, and an hour later he was getting transfusions. He was swollen from Decadron – a super-powerful steroid we would soon hate as just about anyone with brain mets will. So immediately the task at hand was to find out where and why he was bleeding to make his blood counts drop so fast.

The club

“Mets” – metastasis. That’s right. We’re into the jargon now. We know where all of the hot blankets are and where the nurses keep an apple juice stash for patients. I know how to turn the beepers off of an IV unit, what all of the CNAs and nurses are named, and how to record input/output for fluids. Kevin knows how to waltz with two IVs – one in each arm.

The status

We are happy to finally be in a place where there are no constant beepers going off, where we own our own remote, and can sink into a soft, comfortable bed with quiet lights and a fan.

This has been a confusing few days. Kevin sleeps a lot – we’re not sure if this is from cancer, coming down from steroids (and sleep deprivation), or still low hemoglobin (now at 7.6 after 5 units of blood). He’s eating well. After chatting a bit with Kristin, who met us at the door, he ate some pancakes and slept. We’re also seeing some effects from prior radiation therapies beginning to manifest – a very frustrating thing for Kevin.

Options

We find out Friday what the options are. Kevin will need to be stable to meet the criteria of the clinical trial to be accepted. That means no active brain metastasis requiring radiation. No steroids. And he must be sufficiently healed from intestinal surgery, which may be another 2-3 weeks. This is a very small window of opportunity, but there’s still a chance. I was thinking I might start a petition to Merck to accept Kevin for compassionate use for Anti-PD-1. This would spare him the clinical trial rules. By the way, Anti-PD-1 has a new name now: nivolumab.

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A quick look back tonight

I still get inquiries for Tish&Kyle portable walls, and I got such inquiry tonight. Most emails I simply answer with some vague excuse, like saying production is on hold for now, but I answered one tonight for the heck of it. Just to pretend, I suppose.

It allowed me to briefly imagine it was a normal day with Kevin working on CAD drawings in the living room as I answer inquiries. I sent the information to the interested prospect. It felt good for a moment to pretend, even though I know we will never fulfill this order. I re-watched our homemade instructional video, and marveled at our innocence and utter delight of actively living a dream.

Looking back I see many days where we were basking in the glory of a fabulous idea, so enthusiastic about its promise. We’d drive long distances talking about how we’d market this or that, or how to improve the products. The hat he wore in a part of the video was during his birthday last year. We delivered and installed the walls – this was only weeks after Kevin’s scalp surgery.

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It was then that we splurged on a fabulous, Memphis southern-style blues hat for him, and later toasted survival with dangerously good, dirty martinis. It’s so bittersweet to think of these innocent days, knowing cancer was there – unbeknownst to us, as we chatted about happy things and had really fun times. Little did I know as I photographed his curly hair blowing in the summer breeze as he held a level to one of the walls, that insidious, betraying brain mets were growing.

Here’s a look at the video, if you’re interested: 


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One thought on “Home sweet home

  1. Give Kevin my love. I still have a small carving he gave me on one of our many neighborhood romps. What a wonderful time it was. Memories are all around. Tootsie called one day and asked if her boys where down here. I told her Tootsie you only have one boy. That was not really true. the Johnson boys my sons and Kevin belonged to all of us and we loved and enjoyed all of them. Love to both of you. Pat Ortega

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