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Sunday, August 30, 2015

High, higher, even higher hurdles

In my last post I summarized my recent health maladies. In some sense, getting through these was a lot like a long hurdles course. Maybe more like one of those old Wide World of Sports obstacle courses. When I was a kid we loved that show, and often lamented the fact we didn't have something like this in our back yard.  I say it was like hurdles, but it was more like hurdles where the hurdles get higher the farther in to the run you get.

There's an odd sort of symmetry to these hurdles, because this is basically also the order in which we received the diagnoses.

  • Kidney stone in right kidney.

  • Renal cell carcinoma in left kidney (discovered "by accident" during biopsy).

  • Multiple Myelmoa

We received these over a few days after that "get to the ER now" phone call. These were not like hurdles at all. Getting these was more like falling down a hole, finding a handhold, then having that crumble and falling down farther. I'll write more about this later.

The hurdles were basically like this, most of which were surgeries of varying seriousness. They involved 3 hospital stays over the course of about 7 months time, each of varying duration. I included a few "bonus" surgeries which were "minor", but did involve cutting and placing catheters into my major blood vessels near my brain and heart, so I feel like they count. I included links to some of these procedures. If you're like I was up until a year ago, you have never heard of these, of if you have, gave them only casual consideration.

  1. Surgery to remove kidney stone in my right kidney.

    1. [bonus] Insert emergency catheter for hemodialysis and plasma pheresis.

  2. Surgery to insert peritoneal catheter for PD dialysis.

  3. Surgery to remove my left kidney.

    1. [bonus] Insert another catheter for hemodialysis (first one was gone by then).

  4. Autologous stem cell transplant to put Myeloma into remission.

    1. [bonus] Insert central line (not PICC line) for chemo and stem cell return.

I did not count all the IV lines and inordinate number of "sticks" that come with hospital stays and follow up visits. I would also mention the three bone marrow samples I have given over the past year. They're not surgery, per se, but do involve digging bone marrow out of your hip bone with an auger-like device. It's an unpleasant procedure, but worth doing to see what's really going on in your bone marrow.

When I look back on this I'm frankly amazed that I've made it this far. Not because I'm some kind of hero, but because I am not: I'm just a regular guy. I wouldn't want to do any single one of these things, nor would I wish any one of them on anyone. When you line them all up like this, it seems insurmountable. If you showed me this a year ago, I wouldn't believe myself capable.

These hurdles were not insurmountable as it turns out. I was extremely lucky to have a support system in place, including my wife (thank God for her), family, church, friends, neighbors, my employer and our insurance. Let's not forget my doctors and nurses. I, for one, do not take for granted all the superior miracles enabled by the best medical minds in the world. All of these things put together enabled me to get through.


Friday, August 14, 2015

Day One

O Fortuna (O Fortune)
velut luna (like the moon)
statu variabilis (you are changeable)
semper crescis (ever waxing)
aut decrescis; (and waning;)
vita detestabilis (hateful life)
nunc obdurat (first oppresses)
et tunc curat (and then soothes)
ludo mentis aciem, (as fancy takes it)
egestatem, (poverty)
potestatem (and power)
dissolvit ut glaciem. (it melts them like ice.)

-- Carmina Burana

April, 2014. "You need to get to the ER now. Your kidneys have failed." These are words no-one wants to hear. These are words I did not want to hear. Yet I heard them about a year ago, delivered in a strikingly matter-of-fact tone over the phone. I was in a morning meeting at work. It's strange that I remember the tone of her voice so well. Shouldn't there have been some screaming or urgency there?

What do you say to that? I said, "what do you mean my kidneys have failed?" She said something like, "your creatinine level is above 10 and you are in kidney failure." Up til a month ago, I'd never even heard of creatinine. Well. I was stunned to say the least. I called my wife and we made our way to the ER.

About a month before, I was in for my routine physical. In the words of my Physician's Assistant, my kidney numbers "looked a little funny". That meant that my creatinine level was about 2, which is about twice what it should be. She ordered a kidney ultrasound, some new medicine for my thyroid (whose function was also low).

That initial ultrasound did not detect anything, and after, a 24-hour collection of urine and more blood tests were ordered.

There are a lot of things you don't want to hear, and "your kidneys have failed" is one. Another is, "you have a kidney stone which
requires surgery to remove". Another is, "you have a cancerous mass in your left kidney." And another yet is, "you have Multiple Myeloma, a cancer of the blood cells." Unfortunately, I heard all these things.

Getting to that final Myelmoa diagnosis took a long and unnerving several days about one year ago (May 2014). Things progressed from my yearly physical, having some kidney numbers that "look a little funny" to this. Welcome to the Club. The "C" club. No-one wants to be in it, but I am. My family is. It's simply not fair, but it's my new life.

Thus began my most life altering odyssey, ever. So far. I say "so far" because one thing I've learned over the past year is you don't know what's coming. Not that we should live our lives looking back over our shoulder, but I have joined that club no-one wants to be in. In a short span of time, beginning one year ago, my life was re-organized in a ruthless way.

My body is well looked after, we are blessed to live in an area with outstanding medical care and cutting edge research. My physical life is permanently changed, however. I have a cancer for which there is nothing considered to be a cure, I have lost a kidney to another cancer, and I'm on dialysis every night because of the damage caused by the myeloma. My feet suffer from constant neuropathy which is an odd combination of numbness and tingling pain. It's an unfortunate side effect of a life-saving chemotherapy which will hopefully one day go away.