I have a Type A personality. I always have a plan, and a back-up plan. I keep 2 paper calendars up to date — one has the kids’ schedules, and one with our whole family’s plan laid out for months at a time. Usually this is full with potential conflicts– my husband and I may be scheduled to work the same weekend, so who will watch the kids? Or, I might have an overnight shift, so what would happen if my husband (who is a surgeon) gets called into an overnight emergency? We always have an emergency backup. We have lots to look forward to on the calendar, too– visiting friends, nights out on the town– I keep it full so that nothing gets lost.
Immediately after my diagnosis, everything on my calendar was uncertain. I had no idea how quickly or slowly things would get figured out– It was the first time in my life that all my planning and back-up planning was thrown out the window. We had plenty of help to take care of the kids, so I didn’t need to worry about that– the only plan I had to focus on was getting myself taken care of.
After that initial time of uncertainty I was able to get my bearings back, feel like I was on more solid ground as my treatment plan was laid out. The kids were in camp with predictable schedules. Instead of my shifts at work, my calendar was full of appointments- physical therapy, occupational therapy, lab draws etc., etc. BUT, I had a plan laid out and it felt much better.
This past week my schedule was thrown for another loop, and I have realized that my plans may never be certain again. Last week we had some friends in town and were going to spend a day on the Oregon coast. We haven’t been there all summer, and I was really excited to be able to relax and enjoy a day in the sun with my family.
Unfortunately we could not go to the beach because my platelets were at a critical low. Normal is >140 and mine were…. 13. Not enough, and I was noticing lots of bruises. So, instead of going to the beach as we had planned, I went to get a platelet transfusion at a local infusion center.
This was my first time at an infusion center and hopefully it won’t be a frequent thing. I was sitting in a big room with probably 10-15 other patients who also were getting IV medications for different reasons. I put a headset in and tried to keep my head down without looking around too much. Being in a room full of super sick people isn’t good for anyone’s mental well-being.
The following day my platelets had improved to 44– not normal, but no longer critically low. Unfortunately they were not high enough for me to start my third round of chemo on time… and, it still hasn’t started because my platelets haven’t reached 100– the magic number needed to start. Delaying chemo means that the following rounds will also be delayed– and who knows if my platelets will cooperate then anyway. Now my planning is all subject to change, depending on all of these factors that I cannot control. I know that no back-up plan will be able to solve these issues other than time– which means waiting, rechecking, trying to plan again.
I’m still not used to this constant level of uncertainty but I’m getting better at handling it. The most important thing is that I keep moving forward, even if the way that happens is not how I expected. I probably won’t stop planning, but I may need to start filling my calendar in with a pencil.