I started by asking lots of questions about what the problem was, and what the options were. I said I wanted to protect my sleep and quality of life. At first, he said that, in order to get enough of the antibiotics in my system to do any good, I would need to do the IV at least 3 times a day, and maybe 4. After some rounds of questions, and me feeling concerned I was being a difficult, nagging patient, my doctor thought through more of the options and concluded that the med option that was least likely to be effective was continuing the IV med that I am currently on. To my surprise, he had the nurse take out my PICC line a few minutes later, and he gave me a prescription for antibiotic pills to take, instead of the IV. He explained that there is a chance the infection will come back. If it does, it will probably be accompanied by fevers and headaches. There is that chance with any of the treatment options. But I was delighted with the freedom of being able to move my arm easily, and not being tied down with the IV process. Unexpected freedom!
A couple months ago, I made plans with my son for the two of us to leave tomorrow for a trip to New York, for him to look at colleges there. I've been looking forward to this time with him so much. But, two weeks ago, as I was dealing with the IV meds, and constantly checking for spinal fluid leaking our of my head, we decided that we would change the plans and have Jenny go with Isaiah to NYC instead of me.
Now that I'm free from the IV, I feel sad to be missing out on that time with Isaiah, but still clear that it is better for Jenny to go instead of me.
For Christmas, Isaiah gave me an essay that he wrote about what it is like to have a dad with brain cancer. In his conclusion, he says, "I get sad, and angry, and I think that’s okay. I think two things my dad has taught me are, how to truly feel things and how to take life as an adventure. I’d like to keep finding new joy and meaning with him and feel the lows of cancer too."
Following isaiah's lead, this week I'll be feeling the sadness of missing out on the New York trip, and also feeling from a distance the the joy of Isaiah soaring as he explores possibilities in the big city. I'll also be enjoying the freedom of easy arm movement as I stay home and try not be too eager about helping Grace with her history day documentary. The ways my kids both accompany and release me into the lows and soaring of life with cancer keep showing me how I want to both release and accompany them on their adventures.