The Menace of HIV/AIDS

I'm sick of correcting people about Mr. Boy dying.  Oh, so he died of cancer?  Well, no, but cancer killed him.  He died of AIDS.  The kind of cancer he had is rarely fatal for those with "normal" immune systems, but the 2-year survival rate for HIV+ folks who get it (because of HIV) is 50%.  But we still don't like to say people died of AIDS.  A long illness, or the secondary cause of death does better, because then we can live in the illusion that AIDS isn't scary anymore.  We can live in the illusion that health care is good enough that as long as HIV+ people have access to it they will be healthy for an indefinite period, and it won't be AIDS that they die of, but something else, and we can protect ourselves from infection.  And we can live in the illusion that there's no longer a stigma about being HIV+.

Maybe it's that I've had a positive partner, or more than "my fair share" of people in my social circle who are positive, that makes me so sensitive to this.  In the US, 1.1 million people are HIV+.  There are more than 315 million people in the US.  1.1 million people represents about one third of one percent of the population.  About 20% of my social circle is positive, and this was also true before I knew Mr. Boy.  In 2010, more than 15,000 Americans died of AIDS.  In 2013, three people in my social circle (including Mr. Boy) died of AIDS.

But the stigma of AIDS is still prevalent in our society.  When I was read as a gay man walking down the street with Mr. Boy, the assumptions of AIDS on people's faces was easily readable.  And in news stories, the assumptions between the lines make me crazy.  There was recently an article in the New York Times shaming gay men for not taking Truvada as a preventative measure.  And the small piece about  Walter Reed blood samples getting mixed up and what Walter Reed is doing to try to find a positive patient is full of stigma.  In the article, the person is assumed to be infecting others through unprotected sex or sharing needles, because the author assumed the risk of having someone who has HIV and does not know it must be elucidated for the reader.  The biggest segment of new infections of the disease is actually the monogamous partners of males who are not monogamous, contracted through heterosexual sex.  Maybe the author knows more about the patient details than I do, but if so, the details should be put to help finding the patient, not toward creating a scare of one HIV+ person who does not know she is.  The CDC estimates almost 1 in 6 positive folks don't know.they are positive, totalling to almost two hundred thousand people.  If that's your story, make it your story, but otherwise, make the story about the inability of military hospitals and their private contractors to maintain accurate patient data.

Words of Wisdom from the Man I Married

Mr. Boy, dying, has made a number of recommendations to me for life after him.

1. Don't shave with a straight razor. You might be tempted, dandy as you are, but you're too clumsy.
2. You're a MacNeil now.  That means your motto is "To Conquer or To Die."  Conquering is always preferable, and is no longer meant only in a sense of conquering land or people. Spiritual conquering is the ultimate expression, these days.
3. Don't hang out with people who aren't stubborn; you have no capacity to interact with them well.  Stick with Jews and the Irish.
4. Laugh often.
5. You're better at being a good boy than a bad one; it's one of your best qualities.
6. Take time to mourn. Then move on.
7. Read the psalms.
8. No emotion exists that has not been properly captured by the Bard.
9. Being part of an Irish family means you can't ever get rid of them.  Don't try.
10. Add Irish to the list of languages you should learn.
11. Don't spend all your time remembering me, and when you do remember me, remember happy times and Hershey's kisses, not hospitals and vomiting.
12. There is an Indigo Girls song perfect for every occassion.
13. If people ask if you're Scottish, you say "Scots-Irish, by marriage."  Then they won't ask you any questions about your clan heritage.  But learn everything you can anyway.  Theoretically, you could owe fielty to Chief Rory.
14. Love.  Every person, every moment, every thing.
15. Don't try two days at a time. That's a recipe for disaster.
16. I will always love you. I don't know what happens after death (I'd like to think nothing), but if something does - I will still love you.
17. It will still be hard to be sexy while thinking of a red-nosed reindeer. Take comfort in the fact that some things will never change.
18. So I borrowed this one from my priest, but: Most of the time, what you think is a dementor is just a boggart.  And if it's really a dementor, eat chocolate.
19. Dream big; live bigger.  Life is always more amazing than your wildest dreams.
20. Though know'st 'tis common; all that lives must die,
Passing through nature to eternity.

Welcome to the last days - #FuckCancer

Yesterday Mr. Boy had unexplained pain.  When you have cancer, the doctors tell you what should hurt, and how much, and to tell them if your pain is not typical.  So he did.  And after tests, they saw that despite the aggressive chemotherapy, his cancer spread to his lungs.  In a "normal patient," they would advise continuing the chemo for the full cycle, as the full cycle is perhaps necessary for any effectiveness, but with an HIV+ patient with a very low CD4 count, it's too stressful on the body to continue the treatment.

What happens now is that the cancer will replicate, filling Mr. Boy's lungs until he can no longer breathe.  Without intervention, he may also suffer renal failure.  Mr. Boy does not want drastic measures, so the care he is receiving now is purely palliative.  The doctors say he has less than a week

I am in Toronto to be with Mr. Boy.  He's currently quoting Shakespeare, clearly using the time he has breath for its most exalted purpose.  He has to stop every few minutes to catch his breath.  I'm trying to be present, to enjoy the Shakespeare, to enjoy him before he's gone.

Drawing Strength from the Hardest Moments - #FuckCancer

Mr. Boy had methotrexate injected into his spinal column today, one element of his chemotherapy.  That process is painful and he'll be sore for a few days.  We're getting used to the routine of him being in cancer treatment.  We Skype before the doctors round on the patients, because after that, his day in the hospital is full of constant interruptions.  Sometimes we talk later, but we don't have deep conversations after 8AM.

It's hard to find the kind of support we're looking for.  Most support for cancer patients and their families focuses on hope.  What's important is that you have a positive attitude, there's a chance you could beat it, you could be one of the lucky ones if you just try hard enough.  What's important is that you think you have a chance you could survive.

Mr. Boy's cancer is such that the best hope is that he may survive for a little while longer and retain some quality of life, two years is a coin toss, five would be incredible - not good news for a thirty-one year old.  Our spiritual focus has been coming to terms with his death while trying to stay in the moment and enjoy whatever time we have.  The support focused on grief and loss seems altogether inadequate.  Not to say that it doesn't help, but grief is hard, and it takes time.  It takes time to let go of happily ever after, to let go of the possibility of children, to let go of dreams.  And incessant talk of death distracts from today.  Without knowing what Mr. Boy's quality of life after chemo will be, it's hard to make bucket list plans or even regular plans.  Taking joy in the now is

But we are finding strength from people who are share about their hardest moment facing terminal cancer.  People who have been told similar things that we have been told, or further along when the doctors tell them there is nothing more they can do.  One of the strongest stories that we grab on to is that of Superman Sam and his family.  A part of my extended camp community, Sam is an eight-year-old with AML now out of treatment options.  His parents blog at http://supermansamuel.blogspot.com about the experience of dealing with his cancer.  I've followed their story for a while, and Mr. Boy furiously caught up with it after his diagnosis.  We're members of Team Superman Sam, and we thank the Sommer family for sharing what's real about their experiences on a daily basis.  Sam is in our prayers, and we think he's incredible.  We hope he fills his remaining time with joy and love.  Mr. Boy hopes to do the same with his.