Mayo Day 1

Dear friends,

Day 1 at the Mayo Clinic started early.... after about 4 hours of sleep, we headed for the Clinic to report at 7 a.m. I had forgotten most of what they had told me on the phone and if I wrote it down, I lost the paper (this is my story these days, alas!) but I remembered "Gonda Building" and fast. So, I skipped breakfast and then, the check-in woman recommended that I continue fasting until I saw the doctor at 9:45. So, it was a hungry, tired me that waited for the doctor to come in. The cool thing, though, was that I was the envy of all the other people there because while we waited, Jenn gave me a massage on my arm to alleviate that pain. I'm so lucky -- I get to travel with my own personal physical therapist!! :)

The doctor was a young, nice woman who interviewed me about all my symptoms and then went over the scans with us. Even though we had done this with Forscher, it still was unnerving as she described where the masses were. One on the spine, wrapped around the nerves that come out of the spinal column, one on the lungs, somewhere in the mediastinum, close to my heart, one on the side of the lungs ...... so many, I thought, so many of them ..... and I had no idea that they were growing, or for how long they have been inside me.

After going over the scans and answering our questions, the doctor said that she would need to go and discuss the case with her radiation oncologist and surgical oncologist colleagues, so she left us for about 20 minutes, during which Andre and I both rested, and Jenn wrote down a million questions to ask.

She came back and said that the radiation oncologist thought that radiation would only have a 50% chance of success and that there was possibility of nerve damage that would make the pain permanent, so they are recommending chemo first. This is different from what Forscher has in mind, but we still have to meet the radiation oncologist at Cedars Sinai next week.

She then pulled up their standard recommended chemo treatment for osteogenic sarcoma. I asked if they were sure that that was what it was. She said that the indicators are pretty strong but that they will do a biopsy tomorrow morning (another fasting day for me!).

As she pulled the treatment up, we inundated her with questions. She was very nice and open to all of them, which I appreciated. We asked her if the Mayo did chemo-sensitivity testing, something we had heard about in another clinic, where they test the lowest dosage of chemo that you can tolerate that is still effective by a blood test. She said that the Mayo did not and we had a discussion about that, and she agreed that while that might be the trend in the future, it's still not mainstream enough. We also asked about immune boosting and she responded that she wasn't sure what that would do. Looking at my blood test, she said other than my being anemic, my immune system was fine. To which, I replied with some asperity, that it was obviously wasn't or I wouldn't have cancer. She let that go ... a touchy response from a frightened cancer patient, good judgement on her part.

It was the next thing that happened that was the most painful part of the visit. I had asked about fertility preservation options -- Andre and I have long wanted another child, I have wanted to the joy of experiencing pregnancy again. When I saw the recommended regimen -- a 42 week treatment with different chemo drugs each week, many of which are known to have weakening effects on the ova, I asked again.

She turned away from the computer, faced me and pulled back her chair.
"Let's back up for a minute," she said. "You have to understand that even with this treatment, your cancer might not be curable."

I looked her straight in the face, unflinching, even though her words went straight to my heart and twisted it. Uncurable ... isn't it funny that suddenly those six words were going to be what I would remember about this visit, what would replay in my mind over and over again.

Dear friends, I cannot describe to you the anguish I felt. I have been thinking about death for a while, saying to those I have spoken to that it would be a release from this physical existence, from this pain that wracks my body, that I have ignored for so long while I pushed and pushed my body to do my will. And now, suddenly Death was in the room, leering at me from a corner, saying that my wish might come true.

And I felt furious. I didn't even understand why. It was Andre, who also felt angry at that time, who explained it to me later at the hotel. "Uncurable", he said later, "that's not even true .. all she can say is that with their treatment, they can't do anything." All I knew was when Jenn interjected afterwards that we had been talking about death, I declared in my most determined voice that I knew that if I decided to live, I would live, that I just hadn't decided yet.

And I am very grateful to the doctor for clarifying that for me. Because in that moment, I felt very determined that I shall not let a doctor or anyone else for that matter tell me when I am going to die or how -- I shall make that decision myself. And I honestly believe that if I choose life and I fight for it with all my will and strength, then I shall not just survive, I will thrive.

As Jenn remarked, the doctors are good for one thing -- my perverse nature reacts well to them. Till now, Andre, my friends, were all saying that they understood my thoughts on death and that they understood that it was my choice and they all hoped that I would want to live, but that they knew (wise people that they are) that I needed to come to that decision myself.
One doctor today suggests that I might die, and all my melancholic brooding gets instantly converted to pugnacity!

Still, Andre and I walked away shell shocked. Jenn held us as I cried and was such a loving support. She insisted on talking to the doctor about getting me a sleeping aid so that I can actually sleep 8 hours instead of the 3-4 hours that I have been getting these past several weeks. And the darling that she is, she just came in and worked on me for an hour before I go to bed.
I am surrounded by such wonderful friends.

I've taken the sleeping aid, so I better hie me to bed... tomorrow is the biopsy and we will finally know for sure. And now, we have the Mayo's treatment plan. But Andre and I know that what we will do is think very carefully about all the options and determine the best one for us.

Good night! Sleep well.