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I’m exhausted. Read my latest poem about my father/Mom here. It’s almost 1/3rd of the way through MAY! How did this happen? Time keeps ticking its nasty, brutish tock. That’s the thing about Time: It never ceases. The minutes and hours and days and weeks and months and years just keep on going. I suppose in 2020, during the Covid lockdowns, we all sort of globally got our Pretend Pause of Time.
Well, my dad is still alive. Still kicking. He’s bed-bound, of course. Yet actually he managed to get strong enough to walk, with his oxygen mask and long clear connected tubes leading to his mobile oxygen tank, into the old living room and sit down in his old large white comfy chair and look out the floor-to-ceiling window outside to Santa Barbara below, the high school and the football field, Highway 101 (those silent cars crisscrossing north and south), the ocean, Santa Cruz Island, the Mesa across the way, etc. What was he thinking sitting there in that chair, silently observing what lay beyond the window? Was he thinking how much he’d miss all this, the freedom of watching the outside world silently from inside his own home? Was he saying goodbye?
Overall he’d been, until a few days ago, doing significantly better. He was getting stronger. He’d started walking around the house a little more, for exercise. He even started doing exercises wherein he sat on the edge of his bed and then stood up tall and sat again, repeat; I witnessed him do ten of these in a row last week. Pretty shocking given how weak he’d been all those nearly-three weeks in the hospital. He’s now been back from the hospital almost as long as he was in. When the young O.T.—Occupational Therapy—guy came last week, we practiced my wrapping a belt around my father’s upper chest and holding it while Dad slowly stepped down two stone steps down to the outside area, pausing and then walking right back up and back into his room. Again: This was startling.
But a few days ago things shifted again. He started losing energy. The cough returned. (It never fully went away.) He began saying he was so tired he could barely leave his bed all day. It’s hard to say if this is the cancer in his lung or traces of the immunotherapy a la Myasthenia Gravis. (Or both.) Mom said every time she asks him questions lately he waves her away with his hand; he seems wildly tired and doesn’t seem to care about anything. She asked him something she’s asked throughout this process: If you start struggling to breathe again, do you want us to take you to the ER, or do you want us to just let things unfold naturally? He said he wants the ER. So there’s still some sort of fight in the old man. He hasn’t given up yet.
The problem is that we have his second immunotherapy dose scheduled for May 16th, in one week. The oncologist, who’s been with us from the beginning (July, 2021) volunteered to come himself to the house and give Dad the dose in his bed. But Mom feels bad about this, saying he won’t be getting paid for this and she feels uncomfortable having the oncologist—who admittedly is a very awkward man—in the house for an entire hour. Therefore she wants to take Dad to the clinic to do it, like he’s always done in the past. This requires getting my father down the stairs, into the car, to the clinic, and then back up the stairs and into bed. A major undertaking. The past few times we’ve done it it’s been myself and two neighbor men lifting him up in a loaned wheelchair. Perhaps, depending on his strength, I could help him slowly down the stone stairs and then, incredibly slowly, back up. Maybe.
The bigger concern here is obvious: What will happen to Dad physiologically after the second immunotherapy dose? M.G. effects are expected, and longer-term, as the oncologist explained, the biggest impact will be, ironically, on the lung. Where the cancer is. So his lungs will be weakening and dissolving while the cancer is trying to eat them. It’s a complicated, nasty game of cosmic whack-a-mole. If we ignore the cancer and don’t do the immunotherapy, the cancer will start entangling with his major organs and he’ll die very soon, and probably painfully. But doing the immunotherapy we risk M.G. and other issues with his already-compromised lungs.
The upshot is: He’s going to die either way (as we all are), it’s just a matter of how long it takes, which ugliness pulls him down into the depths faster, and how it all happens. We’re trying as best we can to mitigate his suffering. For all the intensity and sadness of everything: The man still has zero physical pain; his mind is as close to as sharp as a tack still; he is able to be at home in relative comfort with his loving wife of almost 50 years and to enjoy basic things like looking at the view, petting the dogs, and listening to audiobooks with my mom. Things could be worse. (They can almost always be worse.)
How am I holding up? Not great. Better today. It’s a few things. It’s funny, isn’t it, how things change and yet don’t change? The problems I had a year ago—crushing loneliness; no money; credit card debt; grief over losing NYC, etc—have all been resolved. I’m in love and have a fiancée. My debt is paid off. I have savings now. I’m once more making money. Though I miss NYC sometimes, hearing about the poverty, the crime, the politics makes me glad I’m no longer there. Especially when mentally unstable homeless people are harassing and attacking riders in the subway trains to a degree never seen before in history.
But there are new problems. For one: I feel trapped. Mainly because I desperately want to travel, especially internationally. I haven’t done this since 2018 when I went to Mexico City. After that it was NYC. Then Covid. Then Dad. Boom, boom, boom. Oh, and for much of that time it was also being broke. Now I have the money and the opportunity…but my dad. I need to be close by in case of emergency, which could honestly happen any time.
There’s also the fact of living in Lompoc. Britney—my fiancée—has lived here all her life. Most of her family is in the greater Lompoc area, or else Santa Maria, etc. (A few family members are scattered in other places, like Portland.) There’s nothing exactly “wrong” with Lompoc. It’s 50 minutes’ drive north of Santa Barbara. The surrounding hills are quite beautiful, covered in green and with exploding mustard plant, reminding me of my 500-mile trek across El Camino de Santiago in Northern Spain in 2016. We’re right by Highway 1 (PCH) and not far from Highway 101. There are trails and hiking nearby. Her family are all very kind people. She owns her house here. We live together in it. And, what’s more: The plan is to move into my house, which I currently rent out, in the Bay Area (El Cerrito, north of Berkeley) next year, summer of 2024, after her teenage son graduates high school. We’re both excited about this.
But it contributes to my nascent feeling of “being trapped.” I don’t feel trapped by her, Britney. But by circumstances. Lompoc, a town I don’t totally dislike, but nevertheless don’t want to live in. My father and his impending death. The lack of ability to travel, or even backpack for a night or two. I’m existing in this weird, strange middle-road, between the eye of the metaphorical storm as it were, wherein all I can really do is simply be here. I feel that desperate need for movement, for action, for change.
In one way the above sentence reads as: I want my father to hurry up and die. Yes and no. Of course I love my father deeply and wildly. (Read my tribute to my father here.) And I genuinely of course want him to stay alive as long as humanly possible, assuming his quality of life makes it worth it. But I also simultaneously feel like my life is “on pause,” is “in limbo,” in a very similar way to the Covid lockdowns in 2020. I can’t really do anything until this man dies. I’d be lying to myself if I didn’t say the obvious: I want to keep living my life. By waiting for his life to terminate, it’s as if, on a certain level, my life cannot go anywhere. I feel like a tire circling pointlessly in a muddy ditch. The damned thing is stuck and nothing can be done about it until the tow-truck arrives. The tow-truck is still on its way.
There’s another thing going on here, too, though. My O.C.D. is up. It’s ironic, because I just published a piece on my other stack about my “Harm O.C.D.” and mentioned how meds saved my life. And yet, here I am telling you that, about 6, 7 weeks ago I randomly, for really no good reason at all, stopped taking my Prozac. (Read the linked piece above to get the full history of my O.C.D.) Close to two months back, I had a bad cold and so I didn’t take the meds for a day. Then two. Then three. Etc. Before I knew it I’d gone a week, then two without them. I hadn’t done this since I started taking Prozac circa winter, 2019.
For roughly the first month off the meds I felt pretty fine. The O.C.D. intrusive thoughts were fairly mild, and easy to control. But about two-ish weeks ago I started noticing changes. The intrusive thoughts became harder to ignore, and they came to the surface more often, and they spent longer in my mind and took longer and longer to extinguish. Very old, intrusive, taboo harm-thoughts began rising to the surface which hadn’t had any air-time in a couple years. That really banged on the red alarm and got my attention. The thoughts started to feel more and more daunting, more and more exhausting, more and more uncontainable.
So, starting this morning, I took another Prozac. First in 6, 7 weeks. I took half my usual dose. I’m going to try doing 50%. Something, I figure, is better than nothing. Yes, I know: You’re never, ever supposed to just stop taking psychiatric meds cold-turkey. That’s exactly what they say NOT to do. What can I say? I’m an idiot. Or perhaps just too ambitious. Maybe it was fine 6, 7 weeks ago because my father was still in the hospital, safe, and I could move around and do things more freely. But now he’s home. My mom and I got into several big, explosive fights. As my stress level has risen, unsurprisingly my O.C.D. has followed along. The two go hand in hand. I’ll report back about my mental space as the days and weeks continue.
So, yeah. It’s all a lot. Mom is understandably scared. She goes up and down but right now she’s frightened, because of the next immunotherapy dose in a week and the potential for M.G. effects and what that’ll look like. Dad’s oxygen levels are normal on 3-4% assistance. But even when he’s at a 97 oxygen level, he now often feels like he’s not fully getting enough air. Weirdly—or maybe predictably?—no one but me seems interested in getting a fresh lung scan. I’ve asked Mom repeatedly about it; she keeps shrugging and saying, What would be the point? Ditto the oncologist. Given that two months ago we saw a massive change from the lung tumor retreating to 2.5 weeks later the cancer expanding like Hitler into Europe circa 1939, it seems like checking on this would make sense. But I realize: Maybe the sentiment here is: It doesn’t matter. We’re doing maintenance at this point. So what if the cancer is still growing. Or shrinking. Either way, whether it’s the cancer or the M.G., he’s going to pass relatively soon. (It’s frankly shocking he’s even still here.)
Whatever it is, there appears, to my mind, to be a sort of denial going on re the lung tumor. This seems perfectly in line with how my family operates. Shove it under the rug; it’s not happening if you don’t see it; rewrite the family drama to reenact how you think it should be/wish it was. Maybe that’s what’s going on. Or maybe it just genuinely doesn’t matter. Or maybe the oncologist is waiting for more time to pass to get a more accurate picture of the tumor. But it’s been six weeks.
In the end, this is my New Reality. It’s all been slowly winnowing down to this moment. This experience. It’s been the better part of two years we’ve been on this journey with my father. All because of a nasty, year-long cough my father successfully ignored because he “felt fine.” Just like when he forced my codependent mother to use Flomax in his peg-tube a week ago and, despite her resistance because of tube issues, she did, and, what do you know: We had to take Dad to the ER because the little balls within the Flomax capsule bunched together and got stuck and we had to have the doctor remove the old peg tube and replace it with another. My father is an incredibly stubborn man. Where do you think I get it from?
My sister, brother-in-law and nephew (minus my niece who, after her second suicide attempt, was pulled out of the psych unit and sent to Hawaii with a friend; don’t even get me started on this) did come to see my father again, last week. This largely because of my mother’s angry, bitter email letter to them from a month ago saying they needed to come see my father more, after all my mom and Dad had done for them.
And, in a surprise, unexpected twist, my maternal uncle, his partner and our long-time 85-year-old family friend came up as a trio from LA a couple days ago and visited. (Mom wrote a book about her 1960s childhood including this family friend who’d been a cloistered nun for fifteen years, unexpectedly living with my 15-year-old mother in her home circa 1965. To read more, here’s my mom’s book.) Mom sent me some photos. She said after their visit the four of them, sans Dad, did a big group hug and cried by the car. My uncle used to be my alcoholic post-hippie black sheep hero. His partner and our family friend I’ve known all my life. They’ve been part of the family since the early 1960s. When my mom told me they hugged and cried I thought, This is the end of an era. My father is dying. MY father. They knew my dad before he was married to my mom. When they were all in their twenties.
Anyway. This is all to the good. I feel bad for Britney, because I know I’m moody and difficult and sensitive and emotional right now. I know to some degree I am projecting some of that onto her. We’ve been fighting more than usual lately. Or else I engage in long, deep silence. I avert my gaze from her. I feel like no one else can possibly understand. No one could possibly grasp what it’s like, being in the depths of this forest, this wilderness, lost and afraid and confused.
But of course people understand. This is as common as bread. Many have lost multiple family members, and sometimes much younger than me. I’m 40. Sober. I have a fiancée. Supportive friends. Some supportive family. My mom. I really have nothing to complain about. But of course there’s the never-ending breaking heart, the knowledge that this man, my father, the man I’ve known all my life, is dissolving. Soon he will be gone. And that’s okay. This is organic as it gets; normal; natural. No one gets out of this thing alive. We’re all a moment away from death.
But here I am.
We are all a moment away from death.
Yes.
This is a good line.
Good job getting back on the meds.