Thursday, May 10, 2018

Lynparza -- Still Parsing!

It was quite a journey, this new medication! If it works (still no objective data) it will be so worth it, but it was a struggle reaching this point.

After about a week on the first round, I developed a fairly painful UTI, if you recall. Then my numbers took a nosedive: white counts down, red counts down, but especially a hemoglobin below 9.0, when the average is 11.0 to 13.0.  The good news was that my liver enzymes and calcium were both looking better. Calcium blood levels are a sign of cancer activity; I hadn't seen anything in the normal range for years.  After I got my UTI treated, and because my hemoglobin was so low, my doctor said "take a break." It took 2.5 weeks to recover sufficiently.

Two imposing walls of lava scorched stone line either side of Santa Elena Canyon. The Rio Grande reflects their image into its placid, green waters.
Santa Elena Canyon on the Rio Grande,
Big Bend National Park
Well, that was just fine, because I managed a trip without meds to Big Bend National Park. Ah-mazing, and the joy of being there with nature and beauty is still with me. I guess all of my trips to wonderful places create a space in my heart, and I treasure them in memory as much as I love being there.

It was hot there: 102°F. Yet somehow, I found that temperature to be fine. I couldn't hike far; I couldn't do much at all but drive or ride, but it felt comforting to be so warm, somehow. The third day was slated for a trip to Marfa, home of aliens and artists, but a haboob made the trip a bit fraught. We topped off the trip with a visit to San Antonio, but we ended up celebrating our daughter's birthday back at our Texas home, Cedar Park, enjoying Ready Player One at the Alamo Drafthouse. My appetite and energy were still a bit impaired, but all of this trip spent without major side effects. It was a mini-blessing.

As soon as I returned to taking the Lynparza, one week to be precise, the UTI hit again. In fact, for the next three weeks, I could tell you the exact location between my right kidney and everything that goes out the door from was all inflamed and painful. I visited the doc but she really pushed for me to stay on; my bloodwork was within parameters. That calcium and those liver enzymes looked so promising.

But three weeks of pain had me at that point I get to so easily these days: how much of this is worthwhile and meaningful? All of my issues so far seem to point to my medications, not my cancer, as their source. I am truly miserable at times, and this was another dance with the devil. My doctor had referred me to a urologist, though, so I had to hang out. I had to keep trying with the meds.

I began to doubt that I could.

Meanwhile, my bloodwork crashed again. Just as it did, I went out for a few hours one night, and came home with something bacterial. I was supposed to be traveling again that week, but the numbers were dropping even lower, except for the hemoglobin. I was in cystitial pain constantly. I had to make a decision: risk traveling 800 miles for a very important event for someone I truly loved, or hunker and nurse my condition, waiting for the urologist. I had just a few days to cancel without costing huge amounts for my hosts (I hope) and myself.

I gave up trying to travel. Instead, I connected via video during the reception. That helped me feel less piteous. But I was determined, as well. I could not live like this, long term. First, I began a hydration regimen: over 100 ounces a day. That wasn't very comfortable either, and definitely not conducive to travel.

Nerd that I am, I began to measure everything. I ordered a home testing kit. I watched my pH, and measured the nitrites (a sign of bacterial infections) and the leukocytes. Sure enough, I was off-the-chart acidic, with white blood cells present constantly. No wonder I was in pain. I took readings about four times a day, and recorded them with photos for the doctor. Yes, I am a nerd. Data rules.

I reached out to forum sisters: had you had this problem? Not too many, a rumor of one or two. No great ideas for handling it, except one, by a newbie with her spiffy packet they send you: call AstraZeneca. I began to adjust my meds on my own: instead of taking two twice a day, I took one every four. Hydration, rinse, repeat. The adjustment meant more time spent tasting metal, but less urgency and sensitivity.

I called AstraZeneca and talked to their pharmacist. My problem wasn't a common one. Adjusting my dosing schedule was better than not taking it. And while this was an unusual result (yeay, Josie and her side effects!) he had noted that other side effects encountered initially seemed to ease off after six to eight weeks. The conversation had the effect of a pep talk with me. I kept on. Baking soda water, meds, Pantaprazole again...and I kept adjusting.

And then, just in time to see the doctor: voila! Not so sensitive or painful. Still acidic, but not as bad. Bloodwork coming back up, at least a bit. (Yes, there was a correlation between bloodwork and pain. I have no idea why.)

Here's where the urologist was awesome: she looked at my data (along with an ultrasound and other data points) to make a diagnosis. We came up with a plan, and I am overall doing better. Less cystitis (although I'm afraid it may return, deep down) but still lots of fatigue. The fatigue is odd. I feel fine until I exert myself in anyway, then I get winded. I suspect the hemoglobin could be better, so I'm working on iron intake.

I am once again feeling more like a human being. Impaired and limited, but human. I still won't go out much, I lean away from sick folks, and I still won't have much of a party life (ha!), but I am not in constant discomfort. That's good.

We will learn if it's working in June. Fingers crossed.