Wednesday, September 9, 2009

September 9th, 2009:

Today has been all about taking care of business: get a smog check for Bianca (my car) and then off to a fun-filled round of scans, blood draws and more scans. The big lesson surrounding all these check-ins and check-ups was: Be willing to ask for help. Last weekend, when I told Ann about going to UCSF for an MRI at 7:00 in the evening, she immediately inquired, "Can I take you to that appointment? I'll be in town that day, and it would be no problem." I promptly turned her down. "No, it's easy for me to take a cab. But thanks for the offer." Why would I want to trap Ann in the waiting room of a hospital while I get scanned? She offered once more, "I can sit in the lobby and read magazines. I never get to do that. Really, it would not be a problem." And again, I put her off. Several hours later, I wondered to myself: why not accept Ann's offer? I'd get to visit with her. Clearly, she wants to help. Don't I need help? And that turned out to be the turning point for me: Why don't I need help? Because I don't deserve it? Because I have to be self-sufficient even as I become sicker and more debilitated? Fortunately, I changed my mind, contacted Ann and told her that I'd be happy to accept her offer for transportation to the MRI scan.

A couple of days later, same story, different circumstances. I was telling Gaetano about getting Bianca smog tested, and my trips to two hospitals for three types of tests all in one day. "Can I drive you?" he asked. Again, I deferred. "Oh, no, no. I can take taxis from here to there," I explained. When Gaetano proposed lunch, I wavered, then switched my position. I wanted to hear about his recent trip to New York. I wanted to catch him up on the avalanche of stuff that I was contending with. Twice in a few days, I changed my mind and let someone help me. I confess to being a slow learner here. I also want to state that it's my big learning curve over the next months. When I disburse my possessions, when I move into Maitri, when I let someone help me bathe, dress and eat if I become really debilitated, then that means asking for help. I can't do it alone, and I don't want to do it alone. Time to unlearn, unlearn, unlearn.

In the midst of this busy day of being helped, I stepped into an unexpected event that truly startled me. It happened toward the end of my afternoon of hospital visits. At 3 p.m. I was in the basement of UCSF at Mt. Parnassus getting a CT scan to assess whether I would be a candidate for radiation of my pelvic tumor. It was uncomfortable to lay flat in the scanner because my tumor has grown so large that I can't keep my right leg straight on the scanning platform. The lab tech and I worked to make me comfortable. He carefully fit me with a foam-filled pillow that would hold my position stable for the scan and potentially for the radiation treatments. Then, another tech came in and put tattoos on my pelvis and legs. I asked her what the tattoos were for, and she explained that they would position the radiation rays. Then, she handed me a card with an appointment for next Tuesday morning. "What's this?" I asked. "It's for your first treatment," she answered. "But I haven't agreed to any appointments. I need to talk to the doctor about what he plans to do based on these scans. He hasn't even looked at the scans yet. We just finished the CT. I have my MRI scans tonight." She looked at me very oddly and said that she'd get the doctor.

After a few minutes, the doctor arrived with a furrow between his eyebrows. "What's the problem?" he asked. "Well, I was just given an appointment for radiation treatments and I don't know what they will entail. I haven't agreed to be treated yet." The doctor replied, "I explained that to you during the first visit." I answered, "Yes, you explained the possible treatments and the possible impacts on my body. But that was an overview. I don't know what you actually plan to do. You need to tell me that. And you need to tell me when my advocate, Eileen Lemus is present. I need for you to look at the scans and summarize what your plans are so that I can agree or disagree based on risk to me."

By this time, the doctor was looking at me as if I was from Mars. "I've already gotten clearance from your insurance company to give you the biggest radiation treatment possible." I responded, "Thanks for talking with my insurance company, but you still have to talk with me. And Eileen needs to be present. I don't know what you plan to do, and I need to know before we move forward. For example, will you radiate just my upper thigh or will you radiate the entire tumor?" "Oh, I'll radiate all the tumor," the doctor assured me. "I would never radiate just a part of the lesion." "OK," I summarized. "That's new information, and I am not having any treatments until Eileen and I have heard the entire plan and agreed to it."

Making an effort to contain himself, the doctor tersely agreed, "Then we have to have another meeting. And we have to do this quickly. There is not a lot of time." I couldn't wait to end this negotiation. It infuriated me that our original agreement to discuss the scans had been completely overridden by the doctor's agenda. What would happen if I caved in and simply agreed to his medical wisdom? Would any damage that I incurred during the treatments be answered by, "I told you so?" Truly, it was a frightening encounter during the middle of a long day. Still, I felt good about defending myself and insisting that Eileen be present when the scans and my tumor and his plans were all laid out as a final assessment. Also, I felt like I barely dodged a bullet.

No comments: