Thank you for your support for my crazy day yesterday. I appreciate the prayers, positive thoughts, email messages, texts, care for my children, and the many other ways that you helped me to get through the day.
The bottom line is no surprise: the tumors have grown, so I will go back on chemo starting either this Friday or on Tuesday. But that wasn’t the hard part.
In case you want a little window into the day, I’ll share this story with you.
My schedule looked like this:
10:15 blood draw
11:30 CT scan
2:00 Palliative care appointment (to deal with the pain)
4:00 Oncology appointment (to discuss CT scan results)
Of course, things don’t run exactly on time so I basically planned to spend the day at Dana Farber.
The blood draw and scan went fine, though they always leave me feeling a bit “off.” With this “off” feeling, I made my way to palliative care. Though I had a wonderful palliative care doctor at Mass General, this was my first time at Dana Farbar palliative care.
A nurse greeted me and it was apparent that she would be taking care of me, not a doctor. Okay.
Palliative care involves a lot of listening, so I assumed that she would need to get to know me first. I outlined some aspects that I felt were important, including the fact that I have a high pain threshold and avoid pain meds as much as possible. Only in the past week, I began taking two regular strength Tylenol at night for the pain, so that I could sleep. I outlined the thinking behind my strong emotional resistance to taking painkillers.
She asked me a lot of personal questions that she read from a sheet, which I figured were required, questions such as did I ever smoke, drink, smoke pot or do heroin.
Then she asked whether I had a health care proxy, where and under what circumstances I might like to die, when was the last time I discussed this with my health care proxy, and how were my children with all this. These questions felt a bit personal, especially given that I didn’t come here to discuss that and I didn’t have a relationship with her. I also wasn’t prepared to discuss them and she did nothing to pave the way into that conversation, so my head was spinning.
But she plowed forward, and I did nothing to stop her. Her next questions revolved around how I would feel when the doctor tells me that there are no more chemo options. What?
I explained that I try to take everything one step a time, and I assume that we will handle whatever comes up.
So she asked me again.
By now, I was feeling exhausted and small. Something about her way of being made me feel really beaten down. We eventually got around to discussing painkillers. I took the narcotic prescription she gave me and walked out.
I won’t fill the prescription, because I won’t be able to take those meds. First of all, I feel like there MUST be something between regular strength Tylenol and narcotics. But also, those pills will remind me of this conversation, which is not healing.
Thankfully, the meeting with my oncologist was more upbeat. Given that he was telling me that I had tumor growth and would be going back on chemo, that is saying something!
I hope your interactions are going well today. Thank you for always lifting me through your interactions. It truly keeps me going.