First the good news…

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!

Bonus: 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

I 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.

In 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.

Stuck

What happens when the old ways of tricking yourself into action no longer work? I promised my writing group that I’d send them a new piece by the end of this month. I had been feeling stuck and needed some deadline, however fake, to get myself writing again. It usually works.

Not this time. I can see too easily through the ruse, having tried it too many times, I suppose. Or maybe this time I’m up against some questions I cannot avoid and still hope to get unstuck.

One: Do I really want to be writing? True, I have enjoyed five years of it. I like it as a means to express myself, to get my thoughts together and out in front of some people (a few, anyway). On a good day I can even convince myself that it is doing some potential good, helping people, teaching, healing wounds.

I like the craft and the challenge of it, and I can see myself improving. People seem to like my writing, unless they are just being nice, and I think that I actually am becoming a pretty decent writer. But, as with the visual art I used to do, I have never felt like it is something I am so driven by I could not stop doing it. Do I keep on? I’d like to.

The next question, one that has really got me stuck, is this: What do I write about? I am thinking in terms of writing fiction, mostly, and that has usually been about making stories out of my lived experience—more specifically, my love life. Those were the stories I wanted to tell. I could never figure out what else to write about, and could never understand how some writers seem to have a magical ability to write of things completely outside their lived experience. I am in awe of that skill. I don’t seem to have it. Not yet, anyhow.

This brings me to question whether I have anything new to say or any desire to make up new stories. And it makes me realize, slightly shockingly, that I have almost no interest anymore in the stories I’ve been working on for the past few years. They don’t seem to matter much. This feels suddenly not so much about my writing, but about my life.

The thing is, sometime in 2015, I stopped being interested in my romantic life. I stopped dating, stopped pursuing relationships, stopped caring if I was single, stopped getting crazy over sexy boys, stopped having sex, stopped even thinking about it, any of it. It just all went away.

This is partly a good thing. A big part. My obsession with being in relationships, in having a boyfriend, in having sex, had been a constant in my adult life from the time I came out more than 30 years ago (and there were quite a few torturous years before that as well). For all that time, I remained aware of my status as single or partnered, getting some or not, of keeping my body in shape, of pursuing constantly, of doing crazy and risky and ridiculous things, and judging myself for all of it.

What a heavy thing to carry for so long! Upon discovering I’d put that burden down somewhere along the way—not sure where or when exactly—I felt immense relief.

So much of my happiness and sadness had been tied up in the question of my coupling, and it became clear I had been living with a lot of mental pain for almost all of that time. Sure, I was happy in the moments things seemed to be working great, but those were fleeting. How much did I invest in the pursuit; and worse, how much in the trying to hold onto or recapture something good?

I came to realize the most basic of truths: This was not a source of happiness for me. It just wasn’t worth it.

Thinking back, I can remember starting 2015 with the idea in mind that it might be the year I gave up sex and romance. This was at a time I was still ostensibly happy seeing someone I liked a lot, mind you. It wasn’t about that. For some strange reason, I just got the idea in my head that it no longer mattered. It wasn’t important. I’d had a good run, and now I might want to stop working at it. Maybe forever, maybe for a while. It was not a concrete goal, just an idea, and I didn’t share it with most people.

I did joke with a friend that I should have a going-out-of-business sale, and that showed I was maybe not so ready to give it up after all. But I didn’t announce the sale, or the plan, if there even was one; I just gradually stopped thinking about the same old things.

A few big things happened last year that no doubt supported this wish I’d planted in my own head—losing that guy, having big health problems, making huge leaps on my spiritual path—and it kind of happened without effort. It’s easy to not have sex, a lot easier than needing to have it.

I’d certainly entertain the idea of dating or partnering with or just having good sex with someone, and chances are I will do at least one (maybe two, probably not all three) of those things again someday; I’m just not willing to put in the effort. I don’t care that much. I like not caring about it, I really do.

Which brings me back to the writing. I find that I don’t care about my characters. Their problems seem relatively meaningless. Stay together, break up—I don’t care what they do.

A wise teacher once said to take the thing that is stopping you from writing, and make the writing about that. Well, I guess that’s what I’m doing right here. How this translates to my fiction, I’m not quite sure, but I am starting to form some ideas. I’ll send this to my writing group and see what they say.

 

I forgot

As 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.

It’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

AT 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.

How 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?

So, 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.

No rush

LET’S START WITH A quick update: I’ve spent the last couple of months, and especially the past month, dealing with a big health challenge. To those I’ve not yet had the chance to fill in, well, surprise! It all happened fast, a few days from diagnosis to hospital to surgery. A giant sarcoma was removed, and with it around 70% of my liver. I’m healing well, and have been home for a bit over a week now. (Anyone wishing to follow the play-by-play can join at http://www.caringbridge.org/visit/daveshealingteam.)

Of all the elements of my healing, in my mind I was most fixated on gaining weight. I felt like if I could get my body back to where it used to be, it would feel and function as it used to. Not a bad theory. And I’m sure that vanity didn’t figure into it at all, haha. Seeing my totally transformed torso with its massive “Mercedes Benz logo” (without the circle) scar and patchwork chest hair, the loss of virtually all muscle tone, the straight line extending from my back to the back of my legs, where an ass used to be, now flat and with folds like old theater curtains, was, I have to admit, a little shocking.

I had been fighting at every meal to push myself a bit past full, to considerable discomfort, toward fulfillment of my goal. I thought that I could stretch my stomach back out to normal size. And it seemed to be working: I had gained almost 2 pounds. As I stepped on the scale yesterday morning to collect my 5th post-surgery data point in what I hoped would be a continuous upward arc, slowly working toward completion of the neat parabola begun many months ago (when exactly, I’m not sure), I was met with the unexpected: not just a blip in my trajectory, but my lowest weight yet.

“Oh no,” I said out loud as I moved my cheap-ass Big Lots scale to different spots on the floor trying to get a different reading (which sometimes works, but not today). It wasn’t a doomed, tragic “oh no”; it was the arrogant “oh no” of “I don’t think so—this so does not fit in with my plan.”

I didn’t want to be stuck in a negative mindset (who does?), so I went searching for the lessons. First, that all disappointment of this sort comes from unrealistic expectations. What was I thinking? Second, I need to be patient. Third, discouragement is useless.

I asked my doctor later that day about the problem of weight gain, and he confirmed that I can’t push it, I just need to eat as well as I can and it will all come with patience. (I also confirmed at his office that my cheap scale is accurate.)

My meeting with Dr. Hassoun was wonderful. I got to ask him the question every one of my visitors has brought up: what’s the deal with liver regeneration? He said in my case, I should expect my liver will regenerate to 80% or so of its original size over the next 6 to 8 weeks. Weeks!!! I was floored. And his advice about eating has me convinced I need to back off a bit and just do the best I comfortably can.

I’m eating. I’m alive. There is no rush. There can be no rush.

In the wind

If you can believe it, I’m still playing my record collection in reverse chronological order. I should be done by now, but I’ve slowed way down. It has been fascinating to wander back through the 1960s, a time before I was collecting records or listening to Casey Kasem (who started in 1970), or making much of any musical memories of my own.

My older sister got her first 45s for Christmas 1968—”Hey Jude,” “Wichita Lineman,” “Little Arrows” and “Les Bicyclettes de Belsize” among them. Prior to that, the only records I recognized from the time were those my parents had. Though I haven’t asked, it seems clear they each had their style and bought their records separately. Mom liked Englebert Humperdinck (Tom Jones must have been too racy) and the Lennon Sisters, and before that, the Ray Conniff Singers and Andre Kostelanetz’s orchestra. Dad bought Herb Alpert & the Tijuana Brass—Herb, my first celebrity crush—and Peter, Paul & Mary. (Granted, Mom is a couple years older than Dad.)

Currently on the turntable: Peter, Paul & Mary’s In the Wind. I’m so moved by this album, and I’m only now realizing that this trio was my very first musical influence. A quick glance at the album cover shows three attractive, hip folk musicians running around the West Village and performing at the 1963 March on Washington. Bob Dylan wrote the liner notes and three of the songs, including the song that I’m now using to describe my last relationship, “Don’t Think Twice, It’s All Right“; and, of course, “Blowin’ in the Wind.”

Civil rights and Vietnam were the subject of protests back then, a hopeful time when real change seemed possible, so I gather (I don’t remember much about it), just before the assassinations started. The songs are earnest in a way that might seem quaint to us now if they weren’t asking the kind of simple questions we are still asking today. Especially today, when the world seems completely out of control. And the answer is the same: Love each other.