I wanted to give you all an update on my sweet mother. Thank you for your thoughts and notes over the past few days. I truly appreciate your concern!
I flew to Florida last Sunday, as I was blogging, then spent the week with her attending doctor’s appointments, PET scan (sugar was perfect!), and helping her organize papers and files. We got to visit with some friends while we were in Orlando between two doctors, and again at her church on Friday for a fish fry as well as southern gospel concert by The Pickerings (they have been singing gospel music since their parents started the group in 1944). It was quite a toe-tapper, and we needed the lift after a long week.
We spent all day at Moffitt Cancer Center on Thursday. It is a two hour drive from her home, so quite a long day! She saw the oncology surgeon first. He specializes in melanoma. He walked in, sat down, and gently patted my mom on the arm, not saying a word for the first few minutes. He confirmed the inability to perform surgery for at least six months, as the cancer will first need to be shrunk. She has “lots of disease” he said, as he looked at her scalp. He didn’t think it has penetrated the skull, so that was good news. He was very patient and had a concerned affect. He seemed to genuinely want to help, but unsure when he would be able to help her. He didn’t even want to go into the details of the surgery as it is uncertain whether she will ever be a candidate. His quick overview indicates an all day surgery removing half of her scalp, all the affected lymph nodes in her neck, folding over the other half of her scalp, and applying skin grafts and all. I’m putting that image on the shelf until a day we need to pull it back down.
Then he appeared to have an “aha” moment, practically begged mom to wait, and darted out of the room to see if they could fit her in with the medical oncologist. They were able to work her in, and so we went to Starbucks downstairs until the next appointment later that afternoon. He said it would be worth the wait, please don’t leave, but of course we waited.
He referred her to the medical oncologist for assessment and systemic treatment before we can consider surgery, so we saw him later in the day. His resident, who asked lots of questions and took a thorough history, preceded the oncologist. They were both encouraging and once more I learned a lot. I’m sure I forgot a lot as well. They neither one wrote anything down for us to look at, so being the visual person I am it made listening and following difficult. But I think I understand where we stand.
They want to test for the BRAF mutation, which is a gene in about 50% of all melanomas, only recently discovered. He indicated that even at her stage, her cancer can be curable. That’s right. CURE-able. If it is positive for BRAF mutation, they have developed two drugs in 2011 that can stop the spread of the disease, even shrink it so the surgeon can remove it. It is effective apparently, so while we are not overly optimistic, this was encouraging news. I have always heard melanoma is not curable (even her regular oncologist said this), and perhaps they will not be able to cure her. But there is hope.
I remembered the first visit Tim and I had to my oncologist, who talked about treatment versus cure, and wondered how my mom was holding up during all of this. But she is a strong woman, and seemed to be doing well.
The slides from her previous biopsy did not show whether BRAF was present, so they took another biopsy in Moffitt to have their own pathologists look at it rather than waiting for the other slides to confirm. She won’t get those results for two weeks, so she will take another trip to Tampa on the 30th. If it is not positive for the BRAF gene, there is no medicine.
The jury is still out on metastasis below the neck.
The PET scan is complex. She is a difficult case because she has CLL and Melanoma. The PET showed hot spots on the hilar lymph nodes around the lungs as well as in the femurs. CLL could create hot spots in the lymph nodes, but not as likely in the bone. However, they are still unclear whether the melanoma has spread below the neck because of the CLL. First step is to try for BRAF. They can also ask a pulmonary doctor to do a biopsy of the lung lymph nodes if the BRAF is not present or medicine does not work. If it is determined to have gone below the neck, or if it is negative for BRAF, she will not likely live beyond twelve months.
So it is still a waiting game but the good news is she is now working with a team of doctors who are looking at the whole picture, and on the cutting edge of cancer research endorsed by NCI. We feel confident in these doctors and she is in good spirits.
We have also had the opportunity to complete legal documents and insurance claim forms, so it was a very productive visit. She is prepared for end of life and has a positive outlook on her eternal destiny. In the words of the first doctor, “by looking at you you’d never know you had this nightmare. You look like a happy little person sitting there.” We laughed quite a bit…and cried some too.
I flew home on Sunday and my brother stayed with her for a few days as well. She will follow up with Moffitt in two weeks. I may fly back down for that. I’ll wait and see how she is doing between now and then but I am thankful I have a portable job!!
À la prochaine (Until next time) …