The Gift of Normal

The view from the Alpine Visitor's Center at 11,500 feet, high up on US 34, Trail Ridge Road, Rocky Mountain National Park. The dirt road I drove to get there is to the left, a family of elk sits below.

It is easy to lose perspective with this disease. I, for instance, have forgotten what it feels like to be normal. For me, that meant a dancing, singing, traveling, working-two-jobs-in-one type of hardworking gal — that’s who I used to be. My family called me the Energizer Bunny. But that gal got left behind almost two years ago, next month.

Since I began the Stage IV experience, one treatment after another has robbed me of that energy. Sometimes, I felt like I was moving through jello. Other times, I felt like I would never fully wake up again. In this current treatment, I feel great on the couch but unable to walk up the stairs without depleting the little store of energy left in my remaining blood cells. Throughout all, I have become the nap queen. My thyroid meds have me all over the map, too, greatly contributing to the malaise.

Because of the chronic anemia, my oncologist moved me off the Lynparza for a few weeks until I cleared a few scans and labs. My bloodwork gradually improved, and I could stand up without bracing myself again. I was cleared to start again.

Because our world has been so crazy, hubby and I decided to make a trip to see a place that is dear to us: Big Thompson Canyon and Rocky Mountain National Park. In many ways, this area is our geographic center. We've come here since our youth. US 34 had had road work done, closing the whole beautiful canyon for months. It was recently reopened with new bridges and alignments. The announcement served as our call to return. So I took one more week off meds to drive out there and back. We flew the daughter in as well, just for a few days. The trip was a blessing in more than one way. 

It was great to see all of those sites. I certainly can’t hike the backcountry anymore, but I can drive the steep terrain with ease, using the same skill I honed as a young woman. And by the end of the week, I remembered what it was like to feel good. My spirit soared. I was with the family I loved; I felt wonderful. The feeling, so strange to me of late, grounded me. It was my gift: a week of normal. Normal eating, normal energy, normal joy in wonderful things. I began to plan my future with hope again. 

Meanwhile, Back on Earth

The week in the high country did my lungs some good: my groundglass opacities have cleared. My endoscopy showed inflammation but no infection. My CT scan for the lungs reconfirmed other findings; nothing new. Nothing new is good. 

But I am back on the Lynparza, at a lower dose. I do feel better on this dose, but I expect I’m going to return to anemia over time. I am still taking naps. I still have GI and U-tract issues, at a more manageable level. Importantly, my urologist and I have a plan to stay on top of developing issues, and I can treat them as they happen; I don’t have to wait.

I have an unexpected ally in my battle for the thyroid. As you recall, early studies suggest that one thyroid replacement hormone, known as T4 (Synthroid, Levoxyl) is encouraging my cancer cells to grow, and possibly blocking treatments by locking into the same receptors and giving those cells a boost instead of a kick in the rear. There is another version of the hormone that works similarly but doesn’t act that way with the cells. It’s called T3 (Cytomel, Liothyronine). However T3 alone has some risks, and it is usually prescribed only for brief periods when thyroids are scanned. But my endo is seeing more than one patient taking these “monoclonal antibody” therapies, and we are all struggling with our endocrine system. (Hey, we get to live long enough to struggle; that's something right there.) She believes that my wild thyroid status swings (from very hypothyroid to very hyperthyroid) will be improved by taking more T3 as well. We have crafted an entirely different combination that favors more T3 (a shorter acting agent) and less T4.

It is entirely possible that my system will be able to fight more cancer on the lower dose now. I’m excited at that possibility, even if I can’t find the energy to dance about it. Stay tuned.