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.

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Squaw

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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Beauty on the Beach

I should be finishing my French homework right now, but I’m taking a break. This week, we are assigned a movie to watch…Les Mis. And get this…it’s in French! I’m catching about one word per sentence at this point. I keep yelling at my iPad, “Slow down, you’re talking in a foreign language!” I am thinking if I have enough time, I should watch it in English too, so I sort of know what’s going on. But I’ll have to answer questions about it in French tomorrow night. It’s all good, though. It’s not like I have to pass the class to pass high school. I’m just working on a bucket list item. I enjoy it and I love the instructor and fellow students. (And I’m having a good year for bucket list items.)

It has been a month of highs and lows. I was called to Salinas, as I got word my dad was not doing well. We were headed to the area for Tristan’s graduation from CSU Monterey Bay on Saturday the 16th anyway, but I got there Friday night. Surrounded by 5 of his 6 children, he passed away on Saturday morning just before I needed to get Tristan out to the campus. It was an emotional day. Being there for my son, being so proud, and mourning my dad. I take comfort in the fact that I think he was ready to go to be with my mom. But it is never easy to say goodbye. They are together now. The two partners in the greatest love story ever. That was my mom and dad.

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A bittersweet moment

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How I want to remember them

His funeral was on the following Friday and  we gave him a good send off. The night before we shared many stories and I learned some new things about my dad that I hadn’t previously known.

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All of his grandsons

Once again, I had to shift gears. (I guess I love that term, since I drive a stick shift)  I said goodbye to my siblings and steered my little Fit to 101 south. I had to put my game face on. I had a marathon in two days. Friends Pete and Erin were already there in Ventura, and had a space for me in their motor home, affectionately named the ‘Ritz’. It worked out well that I drove down on Friday, because I could just relax on Saturday. We picked up my number at the Expo, played some miniature golf, ate an early dinner and then had plenty of time for me to suffer some heavy duty pre-race anxiety. I know now that that is normal for me. But it’s not getting any funner, if you know what I mean.

On Sunday we had an early morning wake up call at 2:45. I had a 4 AM shuttle to the start in Ojai. The course runs from there to Ventura and finishes on the beach.  I brought my oatmeal with me on the bus, because I can only eat so early. This time, I remembered a spoon! I didn’t have to eat it with my fingers like I did on the bus at SLO in April. Yay Kim! Erin was on the 5 AM bus but I found her right away at the start. Pete was running the half, so he was bused to another spot. While keeping warm in the Ojai post office, I wrote on my hand. This one was for my inspiration. The guy who started it all.

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And all of a sudden, it was 6 AM. Time to execute the game plan that Andy had laid out for me. In spite of feeling really nervous Saturday evening, I once again was able to focus and feel positive. Today was going to be the day. Goal = 4:10 or less. I figured I would probably need a 4:08 to actually get into Boston.

So, I ran. It felt good. I started out aiming for around a nine minute per mile pace. At mile 4, someone held a sign that said “San Diego 222 miles, Boston 22” I liked that. I thought, “yeh, that’s not that far!”  After the first 9 miles, the slight downhill on the course made an 8:45 pace feel easy, so I was able to maintain that for quite some time. Downhill in a good way, but not so much that my quads were on fire. I just kept going. I knew my goal was there, on the beach. But like Andy said, I would have to chase it, it wasn’t going to lay down for me. I felt like I was being pulled into it. I would glance at my left hand every so often, and think of my dad. And then I would hear Andy in my right ear, telling me emphatically that “I WAS GOING TO DO THIS!”

When I hit 20 miles in about 2 hours and 57 minutes, I knew that was two minutes faster than when I hit 20 miles in Boston 2009, my one and only sub 4 hour marathon. I wasn’t thinking PR. I was thinking how much cushion I had to meet my goal. This course evens out at about mile 22. There is no more downhill and I’ve been told it would feel like uphill. And I’m a “fader”. I’ve yet to meet the last 6 miles in a marathon, saying “My name is Kim and I really want to run 6.2 more miles!” As expected, I did slow down, but not as much as I had thought I would. I saw Pete at mile 23 and I know he was not expecting me at 3 hours and 25 minutes. It gave me a rush to know someone knew I was doing OK, as the last timing mat was way way back at the 10K point. At that point, it was about maintaining and not cramping up or tripping. I did slow down to 10 minute plus miles the last couple. But I have never had a race where I knew I could walk the last mile and still meet my goal. I saw the 25 mile marker at 3:45. I was tiring. But I KNEW I had it. That beach was BEAUTIFUL!

I crossed the finish line at 3:58:32. I missed a PR by only 57 seconds, and I got my BQ! It was 11 and half minutes faster than needed and my second sub 4 in 10 marathons! Check off another bucket list item. Elation doesn’t even begin to describe it…

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To add to the awesomeness,  Erin totally killed it with a 3:49 and change, and Pete posted a big PR in the half marathon with a 1:52!

Immediately after I stopped running, I collapsed into a cramping blob of painful muscles and so did Erin. But it was the most ecstatic agony I’ve ever experienced. We were trying to save ourselves by taking in electrolytes and massaging our muscles but the giggles were overriding the moaning and groaning.

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Eventually, we were able to walk. So, we did what we needed to do. At this marathon, you get to bang a gong if you qualify for Boston. Like a lot of things we do, we did it together.

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Getting another BQ is something I have thought about every day for the last three years. I came to Andy with this one goal in 2012, not knowing the bumps that were coming my way. I sometimes think that the road to this race has been paved with shards of glass.  As the medical adventure took on a life of its own, I googled all kinds of things about life after transplant, running and qualifying. I couldn’t find anything to support it being possible. But I didn’t find anything about it being impossible, either. So, I forged ahead, hoping for the best. I figured I would just have to write my own story. And this chapter has a very happy ending. Because, you know, those shards of glass sparkled in the sun. 🙂