However, it has one side effect I cannot overcome: It makes me neutropenic. That means my white blood count becomes quite low. I had to take a two-week break between cycles, because counts did not improve quickly. Ibarance is dosed on a 21 day cycle, then I take a seven day break, so that extra week was important. I couple the Ibrance with daily Letrozole, which prevents me from converting estrogen that feeds the cancer. I feel few effects from it.
But my break worked out for the best. I had a long-planned trip to see some friends in Savannah, Georgia. My host went out of her way to make sure I was comfortable, giving me my own bed and bathroom, and even finding a wheelchair to push me around in the more physically exhausting parts of our trip. Although I felt awkward, we were glad to have it -- all of us -- when we stood in long lines.
I was able to enjoy the trip in part because I was off the meds due to the neutropenia. I just had to protect myself from other people's germs, and monitor my energy and other levels to make sure I didn't overdo.
I've already had to miss many events (I'm deeply sorry, SB and NB) because of treatment and the illness. It is very disappointing each time. It was nice to be able to enjoy this one a bit more.
And while I'm not perfect, I'm making the best of it all. I can't hike or run or do very physical activity in any way. I have to avoid lifting things because my spine and hips are getting a little iffy. I have to be absolutely germphobic because I assume my counts are low.
Fatigue is a huge part of this drug. It's a different sort of fatigue: not tiredness so much is the inability to be physical. I want to be energetic but I run out of steam quickly. And it's a little harder to restore my fatigue. Sleep interruption is another big side effect I deal with everyday, er, night.
But there's lots I can still do. I can still ride in and drive cars and RVs, I can still enjoy food fairly normally but in lower quantities. I am doing ok. We are just crafting new adventures that are different from the old.
All of that is good, because we are traveling. We're planning to spend the entire summer here in Estes Park, Colorado. When the doctor changed my drugs, I did have to overcome lots of obstacles to follow through on this plan. I had to find a place to draw my blood here. I will have to travel back and forth more frequently than I wanted to or expected to when we first made them. And we are going to have to figure out how we can see beautiful things without expending huge amounts of energy
It's still worth it. It's still worth living my life as optimally as I can. And that seems a whole lot more optimal than before.
I will not be scanned until September. And that is fine. I plan to enjoy my summer.
I’m glad to hear that you get to spend your summer in beautiful Colorado and that your new medication has made you feel a little better. That’s wonderful news. <3 ~Debbie Kolnitys
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