Hats are for Amateurs and Other Tales of TMI

Every so often in the land of medical adventures, there are times when one has to pull out the TMI card. You know, more than you may have wanted to know. But having the choice between laughing and crying, I think you know where I fall on that one. And laughing alone isn’t as much fun as sharing it.

And such is the case, with the beloved 24 hour urine test. Fellow Amyloidosis patients know of what I speak, but I think this secret is too special to keep within the confines our select little group.

Back in 2013, when it was first discovered that I had high levels of protein in my urine on a “spot check” with a dipstick,  I was told that I needed to do this test. I was to collect all of my urine (OK, I’m just going straight to the potty talk here) OK,  pee, for an entire 24 hour period and store it in a jug to be taken to the lab. This is how they determine how much protein is spilled from my kidneys every 24 hours.  I was a little shocked. Drawing my blood was fine with me, but this…I found to be somewhat embarrassing, intrusive, and not what I had in mind to do when there were perfectly good toilets just about everywhere I looked!

But hell, I figured, I’m a runner, I’ve peed behind bushes out on the trails. This should be a piece of cake. I could do this once, right?

PeeJug

(Above, keeping my sample cool in the fridge, I just had to make sure my kids knew not to grab a swig out of this one.)

So, at the lab, they give you this handy little aid to catch the pee, so you can easily pour it into the jug. You put it on the toilet seat. It looks like a hat, so, what do you know, they call it a … hat!

The results of the first test showed what they suspected, that I needed to go see a nephrologist, the kidney specialist. I was then scheduled for a kidney biopsy.  The results of that were inconclusive at first. They called and cancelled my appointment to get the results, since they still didn’t know what was wrong. So to keep me amused, they had me do another 24 urine test. I didn’t think it was funny at all. But I needed a laugh, so I got a cool pic of me and my hat.

Hat

What I didn’t know was that they were using the extra time, 5 days,  to do a special staining with one called Congo Red, just to be sure it wasn’t Amyloidosis. But it was Amyloidosis. And that has sealed the deal on a whole lot more 24 urine tests in my life.

After about 3 or 4 of these tests, I managed to meet my ‘disease friend’ Kathy Koontz, online, and we started sharing the good times we have with all this testing stuff. By this time, I was feeling quite proficient at skipping the hat, the middle man, so to speak, and going straight to the jug.  So was Kathy,  having been diagnosed in 2013 as well. She told me a story of once when her husband caught her, shall we say, finishing up one of the procedures, at a time when the lab had forgotten to give her a hat, and let’s just say she coined the term “Hats are for amateurs.” That’s been one of my mantras now. In the voice of Forrest Gump, I can here myself saying, “It’s one less thing, ya know?”

I have enough stuff to carry around, you see. On long  work days, when I’m doing a test, I have to take the jug and keep it in a cooler in my car. The protein molecules are destroyed at higher temperatures and if allowed to get too warm, the test will not be accurate. Say what you want about this blog, but it IS educational! So, at Howard’s request, I use my own little cooler. Nope, I don’t think he wants his beer in THAT cooler anymore!

It definitely has gotten easier to have a rather casual attitude about the whole thing. Like my daughter’s schedule at UCSB, my 24 hour tests are now on the quarter system. If my kidneys would ever get their act together and go back to normal, like other good little kidneys, I could stop this nonsense. But for now, it’s every three months. I just finished my tenth one.

The lab usually gives me the jug ahead of time, so I can bring it in when I have my blood draw, a week before my doctor appointment. They give it to me in a bag. I don’t even bother with the bag anymore. It’s just an empty jug. I have, however, always returned the filled container in a plastic bag. I still have a little class, after all.

Until last time. I had no bag in the car. I needed to get my sample in, so the results would be ready in time for my appointment. I arrived at the building where my lab is on the second floor. It’s a pretty busy cancer center, but the lobby is often empty. What would be the harm of dashing in and running up the stairs with my jug?

I walked through the doors, only to discover they were having some sort of reception in the lobby, for about 50 people. I’m not sure how many were medical professionals, but I’m quite sure a few of them knew what I had in my hand. They were all dressed up, munching on yummy little appetizers, and I was weaving my way through the lobby with a jug full of pee.

As soon as I got that sprint of shame done and was in the stair well, it was almost too much. I was bursting with laughter by the time I got up to the second floor and met up with the receptionist at my doctor’s office.

I told her my new expanded mantra: “Hats are for amateurs, bags are for sissies!”

 

Jug Incognito

(I suppose one could come up with a clever disguise if they felt the need…)

As far as my results are going, well, I’m flunking the pee tests. My numbers started out at 2200 mg (2.2 grams) of protein in 2013 (normal is less than 150 mg) and have progressed steadily up to the 4000’s. I dipped to 3000 in June,  but was back up to 4000 in September.I scored a 4500 in December and just pulled off a 4300 this March. So, long term it has been trending up, although it would be better for my kidneys if the numbers started going the other way. I see the nephrologist at Stanford in a few weeks for a check up.

However, my light chain numbers look good. The Kappa Lambda ratio, an indicator of the producers of Amyloid, is something we watch and it’s looking great. My oncologist is going to let me get through April this year without a bone marrow biopsy! I’m pretty ecstatic about that. Now the only thing after my blood this next month is the IRS!

Scan_20160321 (5)

(I wanted to be cool like my friend Kathy, so I made a graph, but since I’m computer illiterate, I had to draw my own))

 

But overall, I’m a happy girl. I know how fortunate I am. I have a major move in my life coming up, which I will start talking about soon. I’m busy training for the Boston Marathon, my dream come true…that once in a lifetime thing I’m going to be doing for the 4th time on April 18th. I’m so excited to be going with Erin and Paula and our husbands, Howard, Pete and Mike. And since my next pee test isn’t until June, I get to pee in toilets the whole trip!

 

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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.

TrisGrad

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.

DaddyMessage

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…

KImM2B

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.

KandECrampingUp

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.

KandEGong

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. 🙂