First off, let me come right out and say thank you to all my friends who've called and emailed me with support and love. I can't tell you how discombobulated I have been feeling over these few weeks, hearing your kind words really helped center me a lot. I needed you at that moment, and there you were. It touches my heart to know that you care and want to share in the journey.
The roller coaster ride has calmed down a bit - I got the results of the PET CTscan I had on Monday and bloodwork - all normal. Phew. The intensity and "need to know NOW!!!!" is subsiding. I am cancer-free. Now, back to our regularly scheduled progamming - helloooooooo summer!
So now what? I had this extremely rare PEComa tumor removed. Where did it come from? How did it form? How does it work? Will it come back in another place? The unknowns go on and on here. Certainly my GYN, my physician, my new GYN oncologist, and the GYN oncologist expert at Johns Hopkins had no idea and had never encountered one before. My files have been sent on to a specialist at Sloan Kettering, he deals with wacky female tumors, and this week they are having a tumor panel about my case. How will they decide to treat me? Do I need to be treated? I'm hoping they decide to monitor me and no chemotherapy is involved, so there is still some angst for me. I'm all about what my husband calls "closure," so the "wait and see" factor is hard for me. I'm not sure when I'll hear the findings and recommendations.
Have you ever had a PET CTscan? I never had. It is more powerful than a CTscan. Before I went through the actual scanner at 11:20, I drank barium at 10:00, and then I was taken to small room with a chair similar to a Lazyboy but with more movement. There I was injected with saline and something radioactive. The lights were lowered, the technician was quick to get out of there and I was told I couldn't read or listen to music, I had to sit in there for an hour, quietly. Dear God. Leaving me alone with my thoughts as I was radioactive, I really couldn't handle that. If I had known ahead of time, I would have been emotionally prepared, but I wasn't. I wept and wept. It was awful. It didn't help that the lowered lights were right in my eyes and didn't encourage rest or peace. I don't know how long I quietly sobbed, it must have been 15 minutes. Then I told myself to buck up and calm down. How to do that? I started thinking about all the medical doings I'd had in my past that were worse, I remembered of all things the time I was being fitted for my Wilmington back brace when I was 15. The brace was a hard plastic shell that went around my entire torso, I used to call it my exo-skeleton, and I had two of them made over three years as I grew 2 inches each year. To get the correct measurement, I lay on a table and had a plastercast made of my torso. As it dried and got hard, I felt the chemical heat being trapped between my body and the cast, an odd feeling. When it was completely dried, a high-speed saw was used to cut me out of it. Believe it or not, the drill was attached to the ceiling above me (like a James Bond movie!), I just didn't look down while it was drilling, but I heard and felt it. Can you believe that the drill broke the first time? All the attendants left the room and I was lying alone on the table, in a full body cast, 15 years old. Eventually it was fixed and I was freed. I wasn't scared, though, I just accepted it. What choice did I have? Maybe Dad was right, I am stoic after all.
As I sat in the darkened room thinking about all the surreal medical experiences I've had, knowing I was currently having another one, I tried to pray. It didn't work at all, I hate praying for myself. Then I remembered that chanting always calms me, so I started chanting the Gayatri Mantra in my head. Immediately, it gave me something to focus on, something profound way beyond me. I covered my eyes with my hand to blot out the light and just chanted over and over. Here is the translation from Sanskrit: Om, I meditate on the radiant and most venerable light of the Divine from which issues forth the triple world - earth, ether, and Cosmos (Heaven). May the Divine light illuminate and guide my intelligence.