Dear Family and Friends,
I’m really feeling much better. It’s amazing how just one week post chemo treatment can make such a difference.
I spoke with a patient at the Royal Oak office of Cancer Care Associates yesterday. She was wearing a soft wrap around head scarf to cover her bald head, had no eye lashes to speak of, and yet I was immediately drawn to her bright eyes. I’d never met her before but saw her husband and recognized him as someone who had purchased a book at the signing event the prior evening. He told me his wife was in the office getting chemotherapy so I went back to meet her. We exchanged the pleasantries and she immediately asked about my cancer experience. Some times talking about my cancer brings back the tears as I mentioned earlier in letters to you but this time it didn’t. I was okay – just talking the ‘cancer talk’. Someday I’ll write about how breast cancer patients ‘talk’ to each other – it’s a different language. The outsider hears only the words however there is much more depth in the exchange going on.
This patient wanted to tell me what a warm and kind doctor David is and she wanted to share a particular story. The patient and her husband had been in an exam room early in her diagnosis listening to David talk to them about test results and a possible sequence of treatment options. The patient’s cell phone rang in the room and it was their 20 year old daughter calling from Europe where she is attending university. The daughter, frantic with worry, found being so far away from her mother almost unbearable. Somehow, the couple communicated this to David and in that little room he asked if he could speak with her. David took the phone, introduced himself to the young daughter, and proceeded to describe what was going on with her mother, the plan of action they were taking and provided the assurance and hope she needed to calm her worries and focus on a positive outcome. It was a beautiful story relayed to me and I was so proud that David just knew intuitively how to help the family through this crisis. In my mind it was so characteristic of David. There are not many oncologists like him out there.
This story reminded me of our own experience with Brian, Paul, Marc and Anne. As you know from reading the emails, letters and blog entries, we’ve been very open with our kids since we found out about my breast cancer. Despite the fact that telling them was one of the most difficult things I’ve ever done (I’m the mother…the caregiver…I’m supposed to take care of them, not vice versa!), they are adult children and deserved to be informed.
Early in the diagnosis, I thought I would be having surgery, radiation and some type of long term hormone-like therapy. I was pretty confident of that and told the kids – plus most of you – that was the course of action. Unfortunately, the Oncotype DX test results on the tumor tissue (Oncotype Dx is the only gene expression test accepted that can predict a patient’s benefit from chemotherapy as well as the risk of recurrence.) were in the mid-range which meant that my chance for recurrence was not low and not high but it was unclear if chemotherapy was necessary or if radiation and hormone therapy would be sufficient to reduce the risk of recurrence.
I found this out just days before I was going for a second opinion. Anne, our 24 year old, was home when we read the result and said, “You guys are sand baggin’! You’re not really telling us what is going on. You said that you wouldn’t need chemotherapy and now you’re saying you might. I don’t think you’re telling us everything!.” I was floored. Sand baggin’? My perception was that we were absolutely telling the kids everything. I told Anne that she should come to the second opinion appointment with us and listen herself and then she could share what she learned with the other kids. She agreed. When we arrived at the appointment with the oncologist, I introduced Anne to the doctor and said, “Anne is here representing all the kids. They are under the impression that we are not telling them everything. I want her to hear exactly what you are recommending”.
I found this very interesting. Anne thinks we are ‘sand baggin’ the information and I think we’re sharing everything we know up to the minute. As those of you with a history of cancer are aware, not all information about your cancer is revealed at the same time. It unfolds as you complete the tests, the biopsies, the surgeries, that interminable amount of time you spend waiting for the actual results. This scenario really showed me that children, no matter the age, process our disease and treatment in their own way. What might make sense to us as the cancer story unfolds may be perceived as withholding information to them.
As always, thanks for your thoughts and prayers.
Love,
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