Today is day 1,000 since I was diagnosed back in September 2012, and so is as good a day as any for taking stock.
I am doing fine. I am living the Tamoxifen life with its pros and cons, mostly pros. I know it is keeping my cancer dormant. I get occasional leg cramps during the night. Ho hum.
Probably the biggest health bother is the neuropathy in my feet thanks to Taxol: my feet have felt cold and tingly ever since I took that drug, and occasionally, when I am really tired, I would say they hurt perhaps at 3 out of 10. It mostly bothers me when I am not being very active – I feel it less during the day. At night, when I am resting or reading I notice it much more. I am thinking about what can be done about it – more on that another time.
Overall, I am alive, fully functional, pain free and content.
I have a full-time job at MD Anderson Cancer Center which is a fulfilling job in itself. Beyond that I gain great satisfaction from working at a first rate cancer fighting institution, even though I don’t see patients or do research (anymore) myself: I serve those that do, and it is a rewarding role.
I have also been lucky in that I have had the chance to speak with others about cancer in panels, online chats and meetups and through social media. I have spoken on occasion to patients and at survivorship panels or conferences. I am grateful for the chance to share my patient experience. It adds another layer of meaning.
Here is a podcast of me speaking about the experience of being an employee-patient at MD Anderson. (It is part of MD Anderson Research Medical Library’s oral history project).
I try every day to remember the lessons that cancer imparts during the time when you are actively fighting it, and are most acutely aware of your own mortality. It isn’t (thankfully) possible to slip back into complete normality, post-cancer, but things do calm down. So it is important to remember the lessons: time is limited, make it count, smell the roses – those are the ones that mean most to me.
Occasionally new insights do present themselves – the most recent one for me during a survivorship panel that Irene and participated in featuring couples who had both had cancer. One of the areas that we explored was how cancer had affected the spousal relationship. And we were asked to impart advice to the couples in the audience – of course these couples did not all both have cancer, but mostly were one person with cancer and one caregiver.
When we were asked to give advice, my inner voice wanted to say to the spouses with no cancer: “get cancer!” Of course I didn’t, with my filter still working :-). I did say that the caregiver needed to accept that cancer changes everything. But why would I want to say that?
On the drive home and in discussion with Irene the whole thing fell into place. The hardest part for me, emotionally, of our cancer journey was the time when Irene was post-treatment and before my diagnosis. During these times Irene often dealt with the anxieties survivors feel: every headache could also be a brain met and a cough a lung met etc. She was, reasonably, down during those times, and for me this future of pervasive anxiety and fear seemed hard to bear, when we still wanted to do some living. Once I went through the same experience, and now of course share these same fears I both understand them better – they can be survived – and have complete understanding for her anxieties when they arise. And so truly, emotionally, things are better for me now, and hence the advice my inner voice wanted to give.
If only there was a way to give people the emotional experience of getting cancer, without the cancer itself.