Cowboys get to be heroes. They get to wear white hats and sling guns and shoot the bad guys to make them disappear. In some cases they get to save peoples' lives. But not always.
So the laser doctor, who I will now refer to as "the cowboy", called and asked to talk to me on Tuesday night. He told me that he had talked to the radiologist who read my mom's MRI and that there were 100 plus tumors in her brain. He said that further treatment did not make sense in this scenario, and that the next step he would consider is hospice. He said he could connect us with some hospice options, and that if I liked I could come in and see the scan and talk to him about it.
Firstly, I was in shock. 100 plus tumors? On October first her head MRI showed that the 10 small tumors had shrunk from the all over head radiation she'd received, and that the laser had destroyed the 3 biggies. How can a brain disease spread so fast?
I left the conversation feeling like it was now my job to tell my mom, and to get hospice set up. I knew I needed wise advise so I called my mentor/friend/boss Barb and talked to her about it. The first thing she said was "get the doctor to tell her, it's his job". I realized she was right, but I wondered if I could do it better than he could? And also he certainly didn't directly offer to talk to her, so it wasn't sitting in my head as an option. I decided after talking to Barb and to Francesca that the wisest choice was to sleep on it and figure out how to approach it in the light of day.
After not sleeping much, I got up at 5 and called the American Cancer Society to cancel a ride my mom had set up to take her to chemotherapy on Thursday and Friday. We hadn't used the service before, but thought it would make my life easier. And if the cowboy was telling me it was hospice time, why would she need to get chemotherapy? She also had chemo scheduled for that afternoon so I realized I was going to have to tell my mom something. I spent time with my constantly awake companion, baby Maureen, on the couch watching a Comedy Central (got the DISH for mom!) movie while I waited for the clinics to open so I could call the cowboy and the oncology office.
I talked to cowboy at about 9, and asked whether it made sense to him that she continue chemotherapy. He said it did not. I said I wanted to come in with my mom and talk about the scan. I had left him a message earlier saying that I didn't know how to talk to her about this and needed some help with it. He set us up for an appointment that afternoon and asked if I could pick up the hard copies of the scan at the hospital to bring to him.
Shortly after that I got through to the Nurse Practitioner at the oncology office who has seen my mom many times and who we both really like. She's warm, attentive and good at giving information clearly. She said she had just talked to the cowboy and that she was surprised and disappointed that the brain cancer had spread because my mom had been doing so well with chemo. Her lungs and liver had been looking wonderfully responsive to the treatment. She also said that she'd just talked to the cowboy and that he didn't think chemo should continue and also had suggested hospice. She offered to talk to my mom about not continuing chemo if I wanted her to. I said I may call her back, but that obviously I would need to tell my mom something about all this because my mom was expecting to go to chemo that afternoon.
Finally, I got the kids set up in front of the TV and went down with my constant companion to talk to my mom. My plans was to give her a little information and then let her has questions. I said that cowboy had called and said that he wanted to see us to talk about the MRI. She asked me if it looked bad. I said yes. We cried together, she mostly cried when she brought up her mom. It seems her biggest worry in all of this is that her mother will not be cared for when my mom is not here anymore. I said that Mike and I would take care of grandma and that she didn't need to worry. Then she said she didn't want to miss chemo today, and I said that the NP said she didn't need to get it today and that meeting with cowboy was more important. (Dear readers: please forgive me for my lies. I'm an awful lie-teller, and I was really making this up as I went along). She said that she really didn't want to miss any chemo, so I said I would call back the NP and have her answer mom's questions.
When the NP called back I was in the middle of kid-lunch, so I took the phone to my mom and went back upstairs. I felt like I should stay with her, but this is my life: I am only able to be in one place at a time whether more is desparately needed of me or not. When I came back down, my mom was sitting on the bed crying. Only one word came out of her mouth: Hospice.
We cried and hugged, I rubbed her fuzzy head where her hair is starting to grow in again. She talked about how she'd tried, and that is all she can do. She said she keeps hearing the voice of some guy she knows whose wife died and who told my mom to "never give up. don't take them (the medical professionals) too seriously". She said "we'll just see what Dr. (cowboy) says".
So Tim came home at noon and mom and I made the trek to his way out past the suburbs office. We went in and the receptionist seemed to know us immediately even though we had not been there before. She took the films from me and we waited to be called.
Dr. Cowboy came and personally brought us back to his office. He commented to my mom on how well she looked. We sat down and he pulled out his tablet and started taking notes.
We talked about how much radiation she'd had up to now. He calculated the units on his paper. We talked about her current symptoms : dizziness, staggery-feeling, new writing problems and a new twitching in her left leg. He asked if she lost consciousness during the twitches, she said no. Brain tumor patients are prone to seizures, and these may be the beginning of them for her.
He then took us to look at the scans. We looked at 10/1/04 and 11-30-04. They were very different. The previous scan showed a few small spots scattered through the brain. The new scan showed blobs of different sizes throughout. There were too many to count.
We then went back into the exam room, and I knew it was time to get down to business. I was glad that my mom had already talked to the NP and that she was somewhat prepared.
Then coyboy proceeded to give my mom a COMPLETELY DIFFERENT schpeel than he had given me the night before or that morning. He said that there were several options. 1. Hospice, which gives her 1-3 months. 2. an new drug that is used more often with non small cell cancer 3. further radiation to the head 4. a combo of the treatments. He then said that he would choose the last option.
I was shocked. I was dismayed. I was confused. And I had an instinct to fly across the room and throttle him.
Not surprisingly,my mom chose what he said he would choose, and today we are going to start more head radiation and to then talk to the regular oncologist who works with the NP as it is his job to look at the whole picture. And his job to prescribe the wonder drug that the coyboy offered my mom yesterday.
So as we left the coyboy's office, he advised us that we are now working with the new radiologist who will do the all-over-brain-frying radiation, but we can give him a call any time. My mom later said to me, "you know he meant that!" As we left he shook my hand, gave me a big smile and said "hang in there".
More to come, but it is time to take my mom to radiation.
