May 13th, 2009: In conversation with my friend Ruthann last night, I realized that a big part of my anxiety, sadness and weeping over the past weekend was grieving the loss of my hopes to become cancer free. Although that could happen, it isn’t happening right now, and this weekend helped me to face that fact.
I’m acutely aware of not knowing what will happen next. But that doesn’t mean that I don’t want to surmise or plan or make guesstimates. After all, one of my professional roles is to manage projects, and I see my health care as a project. Also, it's the time of year when I start ordering tickets for 2009 and 2010 local performances. Will I go to SF Opera next year? What about the ballet season? Should I get tickets for Mark Morris's The Hard Nut during the holidays? How much future can I image for myself? I need more information so that I’m not prey to the worst case scenarios of my fertile imagination. With that in mind, I wrote to Dr. Jahan this morning to set the tone for our next meeting. Here’s the letter:
When I last saw you on April 1st, you gave me the happy news that my pelvic sarcoma and the spots on my lungs had not budged in growth. We agreed to have me get a new set of scans on July 6th and then I would see you shortly afterward to read the results.
I am writing to say that I don’t have any specific health emergencies, but I am experiencing a serious degrading of overall comfort and ease. It feels to me like the pelvic tumor has grown and it’s now more uncomfortable. In the last month, I’ve adjusted my medication somewhat: I went from 100 mcg of Fentanyl to 150 mcg in mid-April and then, briefly, up to 200 mcg at the end of April. 200 mcg proved to be too much; I was woozy and exhausted so I dropped back to 150 mcg and am pretty comfortable at that level now.
My need for sleep has skyrocketed and I now sleep nine to ten hours a night plus an hour or two of afternoon nap. Perhaps this is normal for a person who has this many opiates in their system, but it is a new experience for me. It would be good to get more information on what’s “normal.”
I still go to work every day, and that continues to be a gift in my life. I can concentrate, be effective, not forget things, and I love the interaction with my colleagues.
However, in the past few days, I have been haunted by the probability that I am not getting better. It sure doesn’t feel like my tumor is going away. So I am checking in with you to ask, “Should we do the scans earlier?” If the tumor is moving and it feels like it is, then I want to know that sooner rather than later.
As a result of not feeling better, a host of questions have started to assert themselves about where this tumor goes. Does it just keep growing? Will this compromise my mobility? It would be good to have a better view into the future and that’s not something I can conjure because I have no background in what tumors do.
It would be helpful for me to see you before the scheduled scans in July. I’d be happy to organize my thoughts into a list of questions that I send to you in advance. That way, you could address my concerns.
Thanks for all your help with this,
It’s time to find out more about what’s going on in my body and what can be done to manage the tumor. I’ll keep you posted as I hear more.