Of Bumper Stickers and Light Bulbs

Let’s get this out of the way first. I was in my favorite place when I wrote this post.  Lake Tahoe. The first one is across the street from Safeway, which is ALWAYS my first stop, to buy milk for the kids, of course. The second pic is Squaw Valley along my running route on Saturday. I just got back and I’m missing it already.



I wasn’t going to do it. I wrote a long blog post about all sorts of things related to dying and I changed my mind.

I didn’t want to get bogged down with that. I mean, “The sun is shining, the day is young, we’ve got our whole lives ahead of us and you’re worrying about a burned out light bulb?”

Oh, you probably wouldn’t get that…it’s from “How many dogs does it take to change a light bulb?”, and that’s the Golden Retriever’s response. I’m feeling like a Golden today.  Light bulbs, dying….that stuff can be put away for another day.

Oh, but I changed my mind again. That’s because I think it’s only natural to contemplate one’s mortality when one has lost several friends in rapid succession.

In addition to losing my dad recently, I lost a friend who had breast cancer. She was just 47. Then I lost a friend from my Amyloidosis support group.  She was 52 and had it in her kidneys like I do. That was followed shortly after by the death of Brad. I didn’t know him personally but I followed his blog. I thought of him as a friend. He was tough and strong. Until Multiple Myeloma took him out.

I’ve been existing in a pretty happy place for a while, where I have felt that I’m going to be OK for a long time to come. And I still am. But in light of these recent tragedies, I’ve been doing a lot of thinking about how I ‘should’ feel. Which is really ridiculous, because there isn’t ever any way anyone ‘should’ feel. But I’m caught in between wanting to have the most hope for the future and the reality that remissions do not generally last forever with this disease.  I want to live a normal life like everyone else, but I don’t want to be in denial.

These thoughts bring me to a bumper sticker I recall seeing a while back. “You cannot simultaneously prevent and prepare for war.” It’s a little gem from Albert Einstein and it makes sense to me. When I was first diagnosed and all kinds of thoughts were swirling around in my head, I thought about that concept, replacing the word ‘war’ with ‘dying’. I wondered if you could fight the good fight (so as to prevent dying) and at the same time have a calm acceptance that it might happen. I mean, would acceptance be giving up? Would you lose the ability to fight? Or could they coexist? My brain started to hurt. I was not used to getting all philosophical.

I decided that you could. You have to. Or, specifically, I had to. I knew I would always do whatever I could to fight. But it was when I felt I had an acceptance that I might die from this,  that I was able to move on and be happy again. It’s hard to explain unless you’ve been there, but I think it freed me up to be the person I was supposed to be, expiration date or not.

We all die. If not sooner, then certainly later. One of my favorite (?) expressions is that we can all get hit by a truck tomorrow. There are no guarantees. I can be taken out by a standard issue truck tomorrow like anyone else. But I also know there is a truck out there with my name on it. (It’s probably teal in color) And I can’t lie. That changes you.

I strive for the balance all the time. I plan to be around for a long time. I want to see my kids get married and have kids. I’m pretty confident I will. But when I think about the deaths of my friends, I see how things can change, and sometimes pretty quickly. So I try to live like I don’t have 30 years, even though I promised Howard I wouldn’t go anywhere for at least that long.  That’s not to say I’m going crazy. I’m not spending every dime I have to get out there and travel the world…yet…anyway. I’m just very aware that as things become doable, they should be done. (Hoping that trip to bike through France becomes doable if you know what I mean….) I find great comfort in the fact that I’ve been on the right track all along. The things I want now are very much the same things I wanted before, so I feel I have always had a clear perception of what is important to me.

And as far as how I am doing now, the answer is… very well. When I’ve brought up concerns to my various doctors lately, I have to qualify everything, as in, “Yes, my ankles have been very swollen and I’m retaining a lot of water, but I kinda sorta ran this marathon that went really well last month. You can put me at a 10 on your ‘quality of life’ scale that I know you have in the chart.” Yes, I am grateful. The joy from my last race has not exactly worn off. I know I’ve got it good. I don’t forget that for a second.

Speaking of ankles, I did get in to see the nephrologist (kidney specialist) at Stanford who is on the Amyloid team. I’m not going to have another kidney biopsy anytime soon. He just feels my high level of proteinuria (protein spill into the urine) may not resolve itself, although it is possible it still could turn around. About half of patients in remission continue with nephrotic syndrome (that’s what chronic proteinuria is called) and half of those go onto kidney failure at some point. I can go on diuretics to treat the symptoms if I like, but the one drug that might help control the spill will lower my (already low)  blood pressure too much. I’d rather not faint while out running. Thanks,  but no thanks.

So I didn’t hear what I wanted to hear. Discouraging? A little. Knowing this, and thinking about my friends who have passed away, is just a little reminder, that this thing that I have managed to store in the back of my head, is, in fact, something real.

But I keep in mind the bumper sticker. And the hope. And the sunshine. And how I’m not going to change any light bulbs today.

And how, if worse come to worse, hold onto to your kidneys. Because I may be coming after one of them!

Just kidding, I’m going after my long list of family members first. 🙂

But wait,

How many dogs DOES it take to change a light bulb?

Greyhound: It isn’t moving. Who cares?

Siberian Husky: Light bulb? I ate the light bulb. And the lamp. And the coffee table it sat on, and the carpet underneath the table…..

Pointer: I see it! There it is! Right there!

Irish Wolfhound: Can somebody else do it? I’ve got a hangover.

Border Collie: Just one. And I’ll replace any wiring that’s not up to code.

Cocker Spaniel: Why change it? I can still pee on the carpet in the dark.

Australian Shepherd: First you put all the bulbs in a little circle…

Poodle: I’ll just blow in the Border Collie’s ear and he’ll do it.

Rottweiler: Make me!

There’s more, but I think that’s enough for today. Carry on!

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