My thoughts about why cancer seems different than other diagnoses
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.
My best friend has a birthday this Wednesday- June 2nd- he’ll be 12. He’s my beagle Darwin. When I was a child I was dog obsessed- my first steps were taken trying to pet a neighbor’s dog. We had a few dogs during my childhood but my mother was… How shall I politely put it? …Difficult. She had no patience for children let alone dogs. The three dogs we had (a boxer, a poodle and a dachshund) never lasted with our family more than a few months. I absolutely adored the little black and red dachshund- Schroeder. He was miserable because he wasn’t allowed to be a puppy and not surprisingly he started getting a little neurotic. The best decision was to give him to a loving family where he would be allowed to be a dog. I loved him and to this day keep that love in my heart.
But nearly 12 years ago a dog entered my life who transformed my life. When we first met Darwin he was about 3 ½ months old. He was deep red with snow white markings on his chest, his paws and a white flame on his muzzle with soulful brown eyes. He was adorable. Clearly he had a little mischief in him but we fell in love with him immediately. It was a special day— Lee and I adopted Darwin on out tenth anniversary together.
He was easy to potty train, but that beagle nose got him into more trouble than I ever could have imagined- breaking a VCR, eating a package of English muffins, tearing up a sack of flour, the list goes on. But everything he did that drove me to distraction also drew him closer to my heart. I realized something; I loved him more than I cared about the control that had defined my life for decades. He had a way of messing up that ordered household that I painstakingly kept and if you know me, I am not really into mess. Darwin taught me to relax and I realized that a lot of the things I thought were important really weren’t. Together Darwin and Lee have taught me more about unconditional love and have helped me grow as a person than any therapist ever did.
I yell at him sometimes, especially after saying “off” to him a thousand or so times when he is persistently and stealthily trying to grab a bit of food from the kitchen counter or when he runs back and forth like a maniac in the backyard if he hears the neighbors in their yard. But the thing is- he doesn’t care. He wants to snuggle with me even while I am yelling at him.
He has been at my side when I have been sick, and I mean really sick. He’s lied in bed with me for days on end when I have had bouts of pneumonia or was going through Hepatitis C treatment. It is in no small part due to his love that I have felt well enough to return to work after 10 years. He probably regrets that now since going to work mean I’m not as home as much. I know he does because he howls about it quite often.
This past year has been a year of contradictions. I have had many professional successes and returning to work has been my goal since I stopped working in 2000. But I have also been on a difficult journey with Lee since late last year as we face his prostate cancer together and I have also watched Darwin grow old.
Last year Darwin was attacked by a pit bull in the dog park which tore me apart more than I could have imagined. More recently he has blown both of his rear ACLs. His red hair has given way to white and he sleeps more and more. I know our time together is drawing to a close – ideally measured in years, but I don’t know. He has forced me to face this inevitability. I have reconciled that when his health declines, I will let him go. I won’t force things on him just to keep him physically with me. Our hearts have a rhythm and I’ll trust that rhythm- after all that’s the gift he has given me.
I knew from those first steps as a toddler to pet Tippy that I loved dogs. But never did I imagine that a dog would mesh with my soul, would be part of my spirit, and part of my essence. Darwin is that dog.
So Darwin, on your 12th birthday (61 in dog years via the newest calculations of dog/human years), I want to wish you, my best friend, a happy birthday. You are my joy and you have helped define the family that Lee and I are together with you. You are a dog filled with personality, with stubbornness, guile and mischief. You are also the love of my life, only second to Lee. Thank you for all the lessons you have taught me and continue to teach me. Happy Birthday “Boober Dog”!
A few weeks ago our beloved beagle Darwin tore his anterior cruciate ligament (ACL). It seemed that he just went lame in his right hind leg. We did some research and a former PAWS board member colleague, who is also veterinarian, even diagnosed the problem from my Facebook post about it. Our veterinarian confirmed it when we saw her. In the week between his accident and when we saw the vet, Darwin was on aspirin and we started him on some chondroitin glucosamine. When we saw the doctor, we were told to take him off the aspirin for a few days before starting him on a non-steroidal anti-inflammatory. It was during this period that I had my moment of clarity.
Simply put, Darwin was miserable; he would barely move and didn’t want to eat his food. We were very concerned because the meds he would eventually need to take had to be taken with food (we found that he would scarf down boiled chicken but turned away from his regular food).
He would look at me with misery in his eyes and it broke my heart. But something unexpected happened too. Darwin is nearly 12 years old so I know he has only a few years left to be with us. This is a fact that I rarely think about it because it has been incomprehensible to think of life without him. Yes he is a dog and a pet, but he has captured my soul in a way that is impossible to explain. When I looked at him during those few days when he was in pain I had an epiphany of sorts. I thought about the real possibility that sometime in the next few years, we may have to make the decision to let Darwin go. For the first time I didn’t experience that dread and that knot I have had in my stomach when I’ve thought about this in the past.
Seeing my little guy in pain somehow gave me the understanding that when it is time for him to go, I’ll know it and letting him go will be an act of love that is, the ultimate act of love. When it is his time, letting him go will be my act of unconditional love. He has provided me with that sort of love for over a decade. He is the joy of my life.
I was surprised by this feeling inside of me. It felt peaceful and it made me realize just how much I love Darwin.
He is doing much better now. Because of his age, surgery was not an ordeal we want to put him through, so he’ll limp a bit, he can’t jump and run like he did (he tries- but we stop him). But he is back to his old self – being led into mischief by that amazing nose of his and cuddling with either me or Lee at every possible opportunity.
When it his time, I will grieve and I will have a hole in my heart, but I now realize that I’ll also have peace; peace from knowing that I give him the same gift he gives me- unconditional love. I didn’t know that I was capable of such selflessness. That too is another gift from Darwin.