I was diagnosed with anal cancer earlier this week. This is the latest in a string of health issues that I’ve dealt with in my quarter of a century battle with HIV. Just one more to add to the list – AIDS, chronic Hepatitis C and now cancer.
The timing is particularly frustrating because it was just a few months ago that my partner Lee (who is HIV negative) completed radiation for treatment of his prostate cancer (he is doing fine and remains on hormone therapy for the next year) and because, after months of deliberation, I felt well enough to return to work after 10 years just 4 months ago. (By the way- I still feel well and have no plans to curtail my schedule anymore than is absolutely necessary).
It is also tinged with a little irony. I just completed writing a white paper about HIV and Aging in San Francisco for the San Francisco HIV Health Services Planning Council and the Mayor’s Long Term Care Coordinating Council with a set of recommendations for how the city might better prepare for dealing with a population that is older living with HIV (over 50% of PLWHA in SF will be over 50 in 2012), One chapter of the paper talks about the plethora of co-morbidities that develop among us older folk who have been living with the virus for decades and who have also been on antiretroviral therapy for a long time; among them are a variety of cancers- especially anal cancer. It feel like I am part of the charts and graphs in my paper. In other words my case is hardly atypical.
I am grateful beyond belief to have my work because it provides me balance, normalcy, and it allows me to spend my days doing something I love. I have no intention of having this newest wrinkle intrude more than it has to into the work I find so sustaining as Director of the San Francisco HIV Health Services Planning Council, Co-Chair of the San Francisco Mayor’s Hepatitis C Task Force, Board members of the CAEAR Coalition and the National Working Positive Coalition and my newest work with the National Quality Center Consumer Advisory Committee and Steering Committee. I also have no intention of letting this impede the other passions that Lee and I have in our life and that give joy to us.
I have learned a great deal by dealing with HIV for 25 years and I learned even more as I watched Lee deal with his cancer diagnosis with grace and resolve.
This newest diagnosis has brought out in me a level of resolve and determination that is fierce.
I am remarkably lucky that for nearly 22 years I have been able to share my life with a man who’s support and love helps me get through every challenge and with whom I am sharing a remarkable journey of life. I am also fortunate to have family and friends, especially my sister, who are remarkable sources of support. And of course- I work with amazing people. I know I can depend on my staff for support especially during those weeks where I will be undergoing radiation and chemotherapy and may be in the office a little less and have a little less energy. The entire community of colleagues and advocates who I work with provide me with not just collegiality but with friendship and support.
If anything, I hope to live this newest part of my life out loud, as I believe I always have. I hope that by knowing my life, others will see that AIDS is by far a disease that cannot be shelved – it deserves to be front and center and the needs of older people living with HIV must be addressed. Treatments have been helpful- but we don’t know about the long term effects. We are developing many diseases that are “non-AIDS” related because our bodies have been through an assault by the virus and the drugs we take for that virus for decades. And I hope that by knowing my life there may be one young man or young woman who will be reminded that this disease is still difficult before making a bad decision. AIDS isn’t as easy as taking a few meds a couple of times a day. It’s reach is long- a lifetime in fact- and its effects are profound.