What I did on Spring Break

Did you ever have to write one of those reports in school, like "What I Did on Summer Vacation"? Mine consisted of something like this:

We went outside barefoot every morning before the grass dried, and squealed if one of the cats had left a grass snake on the carport. We made houses for our Barbie dolls out of pine needles and filled our doll dishes from the spring near the swamp. Our lunch was peanut butter and jelly sandwiches with grape koolaid, served as a simple picnic on a blanket spread on the grass -- but we pretended it was our ship on a vast blue ocean. If I was very lucky, I spent the afternoon on the swing set reading the latest double-novel installment from the Nancy Drew book club. Otherwise, we spent the afternoon running foot races and pretending to solve mysteries. After dinner we would go back outside to catch lightning bugs in a jar, only to let them go because there was something so sad about them trapped inside the glass, still blinking, longing to soar again among the shadows of the darkening yard. Occasionally we caught a glimpse of fireworks at the fairgrounds on the other side of the swamp -- bright, booming lights against a Carolina moon. Way past dark, we took a bath, put on our pajamas, and slid under cool, clean sheets to drift off to sleep.

As a child, I always felt like my report was inadequate, because it seemed so ordinary compared to other students' summers. Now I realize it was nothing short of paradise ...

Fast forward to now: Here's what we accomplished on our spring break this week: 7 dental appointments - 7 eye exams - 4 doctor's appointments - 2 haircuts - 1 learner's permit -1 trip to the oncologist - AND 1 stomach bug -- yahoo!

But you want to hear about the oncologist visit, not my long-lost childhood or my hectic schedule, right? Okay, here's the new plan: Don and I are going to attend a leiomyosarcoma conference, called a "Hugfest" in Pennsylvania/New Jersey later this month. While there, we will meet the researchers and learn about the latest treatments for LMS. In the meantime, my oncologist is going to send my records to a sarcoma specialist at the City of Hope near Los Angeles. Josiah is making arrangements for my case to be reviewed by experts there.

We are hoping to get an appointment there this month. If that is not possible, we will pursue Plan B: I will see my oncologist again in 4 weeks, on May 2nd. By that time, we should be able to tell for sure if the last chemo has worked. If it has, I will go back on the single-agent treatment (not the combo!) -- adriamycin. It would be administered on an outpatient basis, every 3 weeks.

In the meantime, I will contact the neurosurgeon at Vanderbilt to schedule the cyber-knife type treatment for the largest brain met. The others, which are too small to treat right now, will be monitored by tests every three months.

I really don't want to do the adriamycin again if it's not working -- but I don't want to NOT do it if it IS working. After this, we move into the territory of trial drugs/off-the-shelf drugs, which aren't actually as scary as they sound. Off-the-shelf drugs are approved for other cancers but MIGHT work on leiomyosarcoma. Drug trials are done in phases. (This, of course, is a very unscientific explanation by a cancer patient, not a professional.) Phase 1 is basically testing to see the toxicity level of various doses on a small group of people. If no one's head falls off and no one's skin turns green, they move into Phase 2, which fine tunes the most effective dose, determines which types of tested cancers respond or don't respond to the chemo, and notes any adverse side effects. Phase 3 rolls the drug out on a broader scale to more patients of the cancers that responded well to Phase 2.

I don't know that I would ever consider doing a Phase 1 trial (to me that is guinea pig territory), but a later phase trial might be a possibility. It's often a struggle to get off-the-shelf drugs approved by insurance companies, but trial drugs, along with careful monitoring, are provided by the drug manufacturer.

So, there it is! It's not perfect, and yes, it wastes another chunk of precious time, but I feel better now that we have a plan in place.

:-) Sharon