First the good news…

Me and Susan splitting a gut

Splitting a gut with Susan in England last summer

Chemo is over! I met with my doctor yesterday, and he has cancelled my last 3 chemotherapy infusion appointments. We’re done. I couldn’t be happier about that. The accumulation of drugs in my system had caught up with me, and the fatigue was pretty powerful. I’d expected the next few weeks to be even more debilitating since, why wouldn’t they be? So instead I get to continue returning to normal. I gave myself my last injection today.

But that’s not why we stopped therapy. The treatment had done what it could—a few very small nodules and enlarged lymph nodes that had shown up on my baseline CT scan had shrunk or disappeared entirely in this month’s scan. Just what those little things were, we can’t be sure of, but it’s nice that they’re gone. But they were not as important as a larger mass that was detected, and which is growing, meaning the chemo I’d been taking was not working on that particular thing. We don’t know what it is exactly, but chances are very good it is something like the tumor I had removed in December (though much smaller, thankfully). I expect another surgery might be in my near future, to take care of it, but that it will be nowhere near the seriousness of the last operation.

The exact course of action is not decided yet, and in any case, it is in the future, so I am doing what I seem to do so well and focusing on the good news (always first the good news), which is taking place in the present. I am feeling stronger and more energetic these last few days, and I expect that trend will continue—maybe not in a straight line, but generally in the right direction. I can make plans with a little more confidence that my body will allow me to follow through. I know the saga continues—as it may for life—but right now I am entering a good part of it. Thanks for being with me on the ride!

Me at Blue LagoonBonus: For those who like freaky coincidences, check out this, my very last (and I do mean last, maybe forever) shirtless selfie, taken at the Blue Lagoon in Iceland last summer. The weird smear across my abdomen, caused by blowing rain on the camera lens, is in the exact spot my tumor was growing at the time. Make what you will of it. :)

Catching up with me

Tommy Roe DizzyI missed my book club meeting tonight. It’s nice to feel some semblance of normalcy to my life, and that includes getting out once in a while and socializing. I’ve been lucky to be able to keep up with my pared-down calendar for this long; but now that I am smack in the middle of my chemotherapy schedule, it has become clear I can’t keep on doing it all. It’s caught up with me. I need to limit my activities, especially if they involve anything physical, and that is the new normal.

As I’m fond of saying, if this is as bad as it gets, I’m very fortunate.

So, fatigue is the main thing—no pain, no nausea, nothing horrendous, just a lot of sleep. I did have a health adventure last week pretty much unrelated to the chemo: extreme dizziness, which turned out to be Benign paroxysmal positional vertigo. Have you heard of it? Apparently, little calcium crystals live in our inner ears, and they can get stuck in the wrong position and impede the flow of the liquid in the semicircular tubes that tell our brain where we are in space. I was thrilled to be diagnosed for once with something beginning with the word “benign.” Better still, it was cured (!) by a simple physical maneuver that took all of 2 minutes to apply. Best medical success story since being told my liver would grow back in 6 to 8 weeks!

I’ve completed the first chemo infusion of Round 4, which, if you think of my chemo schedule as an LP—which, of course, I do—means I’ve just flipped the record and played the first song on side two. If I’d thought of this metaphor sooner, I’d have had time to explain the nearly week-long or two-week-long gaps between the songs, but I’ve got nothin’. The record is skipping? I’ll work on it.

Vertigo soundtrack coverIn any case, I’m now officially in the second half. Some say I’m on the homestretch. I appreciate the optimism, and am pretty optimistic myself, but that’s kind of like heading to LA on the I-5 and thinking you’re almost there when you pass that big, smelly cow ranch. I’ve got to practice patience more than ever and just know that even though it doesn’t feel like it, this is healing. And it will be over soon in the overall scheme of things.

There will be celebrating, to be sure—a big party for all the kind people who have helped me through this, at the very least. But for now, I’ll continue to take it a day, an hour, a moment at a time.

I forgot

John_Travolta_Bubble_BoyAs you might have figured out even before I did, this ride ain’t over. The funny thing about it is, I always knew there was a chance—a good chance, even—I’d have to do some chemo, but I had really and truly almost forgotten. I was so fixated on healing from the surgery, and so excited to be putting my life back together and feeling good and weighing 140 pounds, I just forgot. I really did.

So, it’s not a setback or a disappointment (though to be told I would be fine without any chemo would have been fabulous), it’s just the next step in my recovery saga, a step I had temporarily forgotten about. I’d like to think that shows the power of my mind and not its feebleness. As I’m fond of saying, we get to choose our beliefs; so, I’ll go with “powerful mind.”

The routine comprises IV infusions of 2 drugs—one the first Tuesday, then both drugs the following Tuesday, then a week off. Each 3-week cycle constitutes a “round,” and I’m to do 4 to 6 rounds (probably all 6 if I’m tolerating things okay). This is mostly preventative, to wipe out any small traces that might have been left behind after surgery (even though all the margins tested clean post-surgery, you never know) and to ward off an emerging recurrence. Better safe than sorry.

These drugs are known for all the side effects you’d associate with chemo, and will leave me with a depressed immune system, so I need to be careful to avoid sick people and old food and germs, kind of like The Boy in the Plastic Bubble, if you’re old enough to get that reference. (Wasn’t that John Travolta’s first big film?)

Another part of my ongoing treatment will be periodic CT scans. I had my baseline scan last week, and it did seem to show some suspicious fragments, which just goes to show the doctor knows of what he speaks. I’m fortunate to have one of the country’s (if not the world’s) leading sarcoma specialists caring for me. My initial visit with him lasted 2 hours, which felt like a luxury. Great guy. I got a copy of the post-visit report he sent to my regular physician, and in it he called me a “delightful man.” Well, well. I feel delightful, but I don’t think I’ve ever been called it.

Deee-LiteIt’s not clear yet how this will affect my life for the next 4 months. I may be able to work on a reduced (more reduced than I already work, that is) schedule, or work from home, or maybe not work at all. I expect I’ll do pretty okay. I’m hoping to keep teaching at the meditation center on Mondays. My energy level is likely to drop, but I expect I’ll still be up for lots of visits and maybe out-of-house socializing as well. Lucky for me, I love lazing around on the couch reading and napping and welcoming visitors.

So, the adventure continues. I’m approaching it with a sense of curiosity and hope, not dread and doom (kind of like my approach to the presidential primaries, come to think of it). It’s what I’ve got to do.

Leap day

pool_closedAT SOME POINT, I’M going to have to admit that I have crossed the line between recovering from surgery and being a normal person. (Well, my normal.) How do I know where the line is and when I’ve crossed over? I feel like I have. Not in every way, but in most ways. I’m no longer in pain, aside from the near-constant muscle ache associated with rebuilding my sliced-through abdominals. (It’s amazing how much those muscles do for us! I never realized.) My stamina is good, not great. No swimming or yoga or long bike rides yet. My body is not the same as it was, but it will never be the same.

My stream of visitors wishing me well and bringing me food and flowers and driving me to appointments has dried up, as it naturally should, leaving me with boatloads of gratitude and friendships old and new that I’ll have to take an equal role in sustaining. Oh yeah, that. This is a good development. It means I have to start actively participating in my life again.

I’ve been passively social, you might say. For so long, I was waited on, pampered, treated so well, with no need to make plans or decisions for myself, with no calendar day holding more than one or two easy things to do. I was healing, and that was enough. Now, I’m not only tying my own shoes; I’m doing pretty much everything I need to do to get through my suddenly busy days. This is good, too.

GameOfLife1How did I get so busy so fast? I went back to work two weeks ago, a little sooner than originally planned. I was kept busy with a big freelance copy-editing job and studying for an exam. I sorted through a lot of medical bills. I did the laundry and cleaned my house. Life, in other words.

I’m done with the freelance job, and the test was taken last night, so I suddenly find myself with time opening up again on this, the “free” day we’re given once every four years, possibly to make more room for squeezing in the summer Olympics and a presidential election.

I know it’s not really an extra day, it’s just how we name things; but it can be fun to think of Leap Day as a freebie, just as we can celebrate that extra hour we get with Daylight Saving Time. Thinking, What will I do with my extra day? is a good way of reminding ourselves how precious our time on this planet as human beings is. I’d rather do that than treat it as just another day. Don’t we do enough of that already?

Leap-Day-CalendarSo, I’ve decided to use February 29 to get over the idea that I have no time for writing. I’ve been keeping my hand in it over the last few months, what with the Caring Bridge website and, okay, two blog posts on here and some writing in my journal and even some writing at work. I’ve also been reading a whole lot of good writing and sent a couple of short pieces out and edited my friend Alan’s novel.

All of it counts as something—inspiration or contemplation or learning or honing my craft—but the harsh judge within me feels like I’ve not done a lot of “real” writing in all this time, by which I guess I mean fiction. I’ve not worked on my novel or written any new stories. I’ve felt a little stuck in that sense. Maybe I need to find an online course.

But then I tell my harsh internal judge to shut the fuck up. (Applause.) I’ve been busy healing my demolished body, growing a liver, and gaining back (so far) 20 pounds. (More applause.) And nurturing the most wonderful connections with friends and family and my  cat, Emma, studying and teaching Dharma, vacuuming, and working in the yard. The weather has been wonderful!

How we spend our days—yes, this is life.

Sexploration

Do You Want to Sleep with Dave X Robb?I’VE BEEN ENJOYING my Writing from the Chakras course, which is now half over. As last year, I wanted to post something every week; also as last year, I have not kept up. But I will still post something from every week, every chakra. So, here is a belated sexploration from week 2 (and a link to last year’s), the Sexy Chakra.

In thinking about how I wanted to spend my time that week, I felt a bit overwhelmed, the good ideas spilling out of me, swirling in my head way faster than I could get them down on the page. It’s where my and my fictional characters’ deepest problems, worries, and longings reside. It is a place of celebration and joy, too, and I wanted to express that, to not get hung up on the negative side.

Both sides were important to me since I could see how both were embodied in the single idea of feeling so deeply in touch with my innate sexuality—the joy that it brings, groundedness in true connection, wild intimacy, and knowing another on a deep (maybe the deepest possible) level; and, at the same time, the immense sadness of having lost something so long ago, the sorrow of a long journey back to innocent loving, giving, pleasurable touch and understanding (and how that loss is echoed in the AIDS epidemic, no small thing). The incredible wastefulness of it all, the time lost, and the mental anguish endured still boggle me.

I have spent a lifetime trying to get back to that feeling where sex is all good, where there is no shame, no hiding, no deception, no trickery involved in pretending or fooling the other person into falling into what you both wanted from the start. Yet, even with all the thought (and writing) I had invested in this, the years of experimenting and experiencing, living and giving in the most loving, open, vulnerable, exposed way I knew how, I struggled still.

I am still working my way back to a time when there was no shame, no hurt, no judgment, no loneliness, no danger, no loss. I still look for that feeling—I’ve had glimpses of it—of completeness, of contentment and satisfaction in knowing that I am loved, I am seen, really seen, and that everything is all right.

Dave X Robb pretending to be deadDanger: Sex unsafe

Sex has always held an element of danger for me, whether it is the imagined danger of transgressing or getting caught or going to hell, or just of going somewhere I’ve never been before, a not knowing—there is some excitement in that kind of danger.

There is emotional danger, the risk of rejection and disappointment, of not getting that phone call back after what you thought was pretty good sex and a nice connection. The suffering of trying to repeat a happiness, combined with the suffering of trying to find it in the first place, can be enough to make even the strongest among us doubt the wisdom of trying at all. A lot of people give up.

Even during the happy time, it can be hard to banish completely worry over whether the happiness can be sustained. Like the erection I’m afraid of losing before the condom is out of the package and unrolled, these things can easily become self-fulfilling sadnesses.

And what if it does work out and I get a relationship going? Do I take the risk of talking about difficult things or do I instead avoid rocking the boat of my good fortune, thereby all but ensuring the relationship’s demise? Is there anything more demoralizing than a breakup?

Then there are, of course, physical dangers. It occurred to me some decades into my sexual life that I almost always choose partners with bodies smaller than mine. How’s that for a control issue? I chalk it up to not ever wanting to be in a situation I can’t get out of (and no handcuffs or ropes either, thanks, unless I know and trust you). Similarly, I seem to always be aware of the location of the nearest exit in a relationship.

Dave X Robb's first California IDThere is the physical danger of AIDS. Having come to the party a little late, my sexual awakening coincided perfectly with the national shutting down of sex. It felt like one of those big, heavy metal doors being rolled down over the front of a shop, and I’m left there standing on the sidewalk with my coupons.

I shouldn’t complain really. I’m alive today because of it. It’s not so hard to adapt to safe sex when you’ve not yet had the experience of full-on gay sex without the barriers. That and seeing people dropping dead all around me made it reasonably easy to adopt safe sex.

I understood the logic of the ubiquitous prevention messages and knew I could, through sheer force of stubborn will, adhere to them like a straight-A student; yet I always felt uncomfortable with the admonition to use a condom every single time, to always assume your partner could be positive. Yes, it was practical, sound advice from a public health perspective at a time when literally half of all gay men in the city were HIV-positive. It was a simple, easy-to-understand guideline that made rational sense.

Dave X Robb fictionBut it doesn’t take a big stretch of the imagination to see how this might all come across as unappealing, albeit necessary, advice to a young gay man just coming to terms with and learning to celebrate his fierce gay pride. To see my lovers as potentially deadly, as ticking time bombs just waiting for a moment of weakness in my safe-sex resolve to explode in my ass, constituted a turn-off to say the least.

It was not so much that I wanted to have sex without condoms, those literal barriers between us, though I didn’t like them and I could imagine I might be missing out on something pretty fabulous, having heard as much from those who had experienced such a thing. I was not even particularly afraid of the virus, by which I mean I trusted condoms to do their job and trusted myself to use them properly and consistently, good student that I was.

It was this: I didn’t like assuming my partners were lying.

That was the part I could never get used to. I didn’t like being told to treat every partner as someone who could be, through malevolence or selfishness or just plain ignorance, putting my life at risk. I didn’t like always coming from a place of distrust and fear. I thought, We are better than that.

xoWe are in a different time now, and a lot of people seem to be having a hard time wrapping their heads around it. In an era where condoms aren’t the only safe sex choice, where you are safer fucking an HIV-positive man on treatment and undetectable than practically anyone else, where preventative treatment has been shown to work, and where—let’s just be honest and say it—HIV is nowhere near as scary as it once was, it might be time to consider what safety means and to reevaluate our risk tolerance and our approach to safe sex, each of us in our own way.

Nobody is saying to throw safety out the window, though you would never know it from reading the claims of screeching op-eds to the contrary. But the game has undeniably changed, hard as it may be to take that in (understandably—we’ve been living with the same safe-sex messages for 30 years, after all). That said, it has always been the case that you don’t need protection if you’re having sex with someone you know to be of the same status, positive or negative, as yourself. If you trust that person and are sure of your own status, then you have a choice.

Where You From You Sexy ThingIn my book, trust is necessary to intimacy, and intimacy is necessary to good sex (and good sex is just, well, if not necessary, at least important). Sometimes I choose to trust. I’m not stupid about it. With guys I know and love and trust, though, I have chosen to lay down my fear. That doesn’t guarantee that I will never contract HIV by mistake, but the odds are on my side; and in a world full of uncertainty—where HIV matters, but so do other things—it is a minuscule risk I find worth taking.

And yes, sure, sex without condoms feels better—my older gay brothers were not lying—but more than that, it feels way better mentally. It’s what I was missing.

A good thrashing

John Cougar: Hurts So GoodI WENT TO THE BANYA the other day and got thrashed with branches. Have you heard about this place? Archimedes Banya, out Hunters Point way. It’s a great, fairly new facility that incorporates bathhouse traditions from many cultures (thankfully, excluding the distinctly American version of the sleazy gay bathhouse), with an emphasis on the Russian.

I rode my bike out there in the rain the other day for a friend’s birthday gathering, and even the ride was interesting, what with it being in a part of town I rarely find myself in. It feels like this place was dropped magically into the middle of nowhere.

What makes it special is not just the facilities — pools ranging from ice cold to very hot, impressive double-decker saunas and steam; the thrashings, scrubs, and massages on offer; and a nice restaurant with good, healthy food — but the fact that everyone, men and women together (yes, the whole place is co-ed), seems to be having a really good time. Don’t get me wrong, I like the Zen quality of places like the Kabuki Springs & Spa. Sometimes that’s just what you’re in the mood for. This, however, is a place where you can laugh and chat and carry on, naked or clothed — there are distinct sections for either option — with friends. It’s fun, in other words. And it feels really good.

In typical San Francisco style, there was a pretty good representation of ages, ethnicities, native languages, sexual orientations, genders, and body types in the mix when I was there, all coexisting perfectly nicely and non-sexually. Nobody was creepy.

Clothing required beyond this pointSome people I’ve told about it were put off by the gender-blending. I thought it was great. It felt very natural. But then, that’s me. I’ve always liked taking my clothes off, and now that I can’t really do the beach thing anymore, this makes for a pretty decent sunless option. (And for sun worshippers, they have a great rooftop deck with views of the Bay!)

So, back to these branches. This service where you get thrashed with scented leaves in a very hot sauna has a name: venik platza. And I loved it. I’m not sure if it was the heat or the flogging or the leaves themselves that did it, but I got a little high, in a very pleasant way. It’s hard to explain, but my friend who also got the treatment had the exact same reaction. So, that was something.

I also got some insight into S/M culture. Stick with me on this. You see, there’s something about lying there literally and figuratively naked, at the mercy of someone else, and not knowing what’s coming next — how or where on your body you’ll next be touched or whacked or whooshed by the hot wind — that put me in mind of the best of good sex…or massage, for that matter (or tickling, I suppose, though I don’t think I’ve been tickled in about 45 years, so I can’t quite remember).

That element of surrender and not knowing what to expect next, this platza thing being a new experience for me, was kind of thrilling. I used to go to a very good masseur many years ago, and no two of his massages were ever the same. It’s easy to get addicted to something like that. He’d also have me riding the edge between pleasure and pain, and this thrashing was like that as well, though discomfort or intensity would describe it better, since there was no actual pain involved.

So, I liked it, a lot, and part of what I liked was that it was uncomfortable…which just goes to show, you can choose to like or dislike your experiences. I also liked, in a strange way, getting all kinds of interesting medical procedures done last year, some of which were painful. Though I didn’t like the pain itself, there was something about the experience of exploring my limits around pain that I did like. And, being able to be present with one’s feelings makes them somehow more manageable, as I learned in a good talk by Jon Kabat-Zinn I went to last week.

Nike swoosh in the Roman Forum ShopsPlus there’s that endorphin rush. I think there are several elements at work here: abandoning control, trusting, vulnerability, and allowing oneself to feel in the moment; experiencing something new and unpredictable that works in a way you don’t understand; playing with our limits of pain or discomfort and extremes of temperature. All of a sudden, BDSM makes a little more sense.

On the other hand, I am not crazy. I dislike pain. I’ve always hated that stupid “no pain, no gain” thing, as does any personal trainer worth her or his salt. Pain in the context of fitness is just stupid. I think even Nike knows that — they probably meant to say discomfort, but the word didn’t test as well in focus groups since it doesn’t rhyme with anything. So, I won’t be getting publicly flogged at the Folsom Street Fair this year. Sorry. But, if someone there offers venik platza, we can talk.

Also reviewed on Yelp!