Here We Go Again…

Long time no catch up on my running or my health. So here goes…
Last year I started writing a blog about my ‘running life in ruins’ that was never posted. Our move to the foothills had seemed to have a major impact on my training in terms of endurance and speed. I was blaming it on the big changes that had come my way and the lack of somewhat flat bike trails on which to train. My unpublished first draft ended in describing how I was on the upswing. I felt things were coming together. But that feeling was short lived. My second draft never left my head. It was an ongoing discussion with myself how things were truly not getting better. I joined a local gym and began doing a lot of running on the treadmill to supplement the neighborhood workouts that were all steep hills. After weeks of training, I ran almost my worst half marathon ever. I tried a local seven mile race and was very disappointed in my speed. On New Years Day I ran one of my slowest trail half marathons ever. I was discouraged, but I kept training. I was entered in Boston 2017 in April, after all. I ran some long runs in my ‘hood but decided to give that up when I realized I was in danger. There are no shoulders on the roads and I was battling deep ditches full of water and fast drivers not expecting runners on the road. I went full time to the gym and felt it was working. But it wasn’t. I couldn’t duplicate the paces I dialed up when I was out on the open road. In the meantime I started suffering severe anxiety attacks that seemed to come out of nowhere. I wasn’t sad, scared or nervous when they came on. It was just a horrible feeling that came over me for no apparent reason. But I made good on my plans to go to Boston anyway. It is such an honor to be there.
It was quite a rough trip as it turns out. The anxiety came on full force, and I felt trapped in a spiral of worry, even though I had long decided this marathon was one I simply wanted to finish. And that I did, just barely under the time limit, my worst 26.2 by almost an hour. I never felt like myself the entire day. I spent a good amount of time walking. But I did it, and although it was my worst marathon ever, I know I earned my medal. The best part of the day was finding my dear Erin at Athletes’ Village before the start. We had not been on the same bus and it was luck that we connected among the 30,000 runners there that day.

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I hadn’t wanted to make excuses, but at this point, I was beginning to realize there was something wrong unrelated to my training.
I need to back up to March. My local oncologist, Dr Sun, looking at the fact that my proteinuria had never been resolved, decided it was time for another bone marrow biopsy. There were some questionable findings and some additional tests, but in the end, just before Boston, he said things looked OK. He was leaving the practice and was handing me over to a new doctor for future visits. I was worried as I had a lot of faith in my doctor and would miss him. I had grown very attached to him and felt his care was the best.
In May, I met Dr. Choi, my new doctor. I liked her instantly and my fears of working with someone new were laid to rest. She quickly put me on a medication that put an end to my anxiety attacks. . She was very friendly but also very concerned and thought it would be a good idea to see my Stanford doctors again, and I was all too happy to do that. I was struggling with increased swelling and I had gained weight. I hadn’t changed my eating and up to that point, was still working out. I felt like I had no control of my body.
Before I knew it, I was off to see both Dr Liedtke the hematologist and Dr Lafayette the nephrologist again. Both concurred that my light chain numbers , which measure Amyloid production, were slightly high and that perhaps I was no longer in a solid remission. This could be causing my kidneys to keep leaking protein. Dr Liedtke recommended a newer drug called Daratumumab, an antibody treatment.
I’m fortunate to have the team at Stanford, who have always seen me quickly with any new development, and my insurance company, Cigna, which has approved all of these expensive treatments.
The protocol for Dara is to do the first dose over two days, then one dose weekly for 9 weeks. It’s given intravenously over a 3-4 hour period, and with blood work and pre-meds, it ends up being about a 5 hour appointment after the initial slower dose. Then every other week for 24 weeks, then monthly until disease progression. Yeh, until it comes back! Yikes! But I’m used to all that sort of doom and gloom by now! It doesn’t get me down.
Although I am receiving treatment in Pleasant Hill, my first two treatments were given at Stanford so I could be monitored carefully for reactions, which are most common on the first day. And react I did…a stuffy nose, severe cough and my blood oxygen levels plummeting. But it was over quickly as the nurses stepped in with oxygen and drugs, which provided smooth sailing from there on out.

Subsequent treatments have been uneventful and I’ve gotten into a routine. Each time I think I’m going to get some work or writing done and each time, the benedryl puts me out. I enjoy a nice nap. The other pre-med is my old friend dexamathazone, with tends to wire me up, although not until later on in the day, and then give me a ‘crash’ two days later. But it’s all good. I treat myself to a Jamba Juice on the way to each appointment and the nurses have been  absolutely wonderful.

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My light chains fell back to a normal level within two weeks. Swelling has still been a problem in spite of an aggressive rise in the amount of diuretics I have been taking. I had a recent 24 hour urine test and unfortunately the level of protein has reached an all time high yet again, 5500 mg, or 5.5 grams.
I received those results on the same day as a scheduled follow up with Dr Liedtke in mid October at Stanford. Although changes in the kidney typically lag behind light chain results, she seemed very concerned. After all, I’ve been waiting for four years for my kidneys to catch up and it’s never happened! She is wondering if perhaps other light chains, which are not showing up on the tests, are being produced. I will be starting a new drug called Carfilzomib very soon, that will be given IV as well, two days a week, for 3 out of 4 weeks, along with the Dara.
During all this time, I have let my workouts slide. Having no goals in mind and a feeling like the gym is too far away, have led me to get very lax as far as my fitness routine. I’ve done some hiking and kayaking but nothing on a regular basis and really no running at all. I’ve decided to take this time to perhaps let myself miss running. While I have always enjoyed having a goal, I’m taking time to relax and not be on a timeline, and I think it’s been very good for me at this point. When I come back, I’ll be ready. I’m hoping during this time, my kidneys will get a chance to heal.

My life is incredibly full. I love being home with my animals. I’ve jumped into hosting our little guesthouse on Airbnb. On my trips to the Bay Area to work, I visit with friends and shop at the stores that we don’t have here, because you know I don’t live in ‘civilization’ anymore. The kids are all doing great. Business is good. We are going to be opening up for pet sitting in a new area soon. I flew to New Orleans to attend the 2017 PSI conference and had a ton of fun of doing a presentation on chickens. I’m forever the ‘chicken lady’ now.

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Yep, it’s all good!

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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?

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(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.

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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!”

 

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(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!

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(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!