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 My unpublished first draft ended in describing how I was on the upswing.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.
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.
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.
Yep, it’s all good!