*Consider going paid for only $30/year ($2.50/month)
CLICK HERE FOR JOURNAL #1 OF ‘THE CANCER DIARIES’
It’s Monday again. Mid-May already. As always: The incessant movement of Father Time. I’m back home in Lompoc. Yesterday was quite a nice Mother’s Day. Britney and I got up mega-early and drove a la Highway 154 to meet her mother and her stepdad where they were camped at the lake to do a hike. It ended up being four of us actually hiking: Myself, Britney, her mother and her mother’s best friend, plus her mother’s best friend’s 12-year-old black Lab, Pluto. (Very sweet dog.)
Britney had said it was a mellow little walk “with a little up and down” but it turned out to be a legitimate hike, six miles from the campground to the Cachuma Dam. (I’ll include some photos.) Her mom and her mom’s best friend—though in their late fifties, early sixties—pumped along at a very fast clip. I loved this. I prefer to hike fast. People often say: Don’t you want to “enjoy” the landscape? Stop and smell the flowers, as it were? The answer is: Yes! I Do. I just like to do it while also walking fast. So this was a fun hike for me. It was a hot, sunny day with clear blue sky. The Santa Ynez mountains looked glorious in their jutting, jagged levels and layers rising up green and brown and gray above the perfectly calm blue lake.
After, we said goodbye to everyone—her mom and mom’s best friend but also her stepdad and her mom’s best friend’s husband, and Pluto, of course—and then headed south to Santa Barbara, still along 154. Highway 154 is a beautiful, snaking, wild, dangerous road. There must be fatal accidents there all the time, I’m sure. The fog became thick not long after we left the campground and the car ahead of us totally forgot how to drive. The foggy, mysterious road reminded me of my brief time living in Santa Cruz when I was a wee lad of 22, and of course of living in Ocean Beach, San Francisco circa 2008, 2009.
Once in S.B. we picked up sandwiches for the two of us and my mom; I’d texted her about getting food. (My father, sadly, cannot eat by mouth, due to his Myasthenia Gravis condition.) My father looked tired, more than anything else. He was in bed, as always. In bed in the room he now exists full-time. His cheeks were a flushed, piqued pink-red. I don’t know why. I’ve seen this a few times now. (He’s still on oxygen assistance so he’s getting plenty of oxygen.) I asked him how he felt. He said, “eh,” shrugging. His big, wide blue eyes looked at me and then away. I’d clutched his arm when we first arrived.
My mom was happy to see us. She looked sad. She wore some makeup for Mother’s Day; eyeliner. We’d brought her a bouquet of white roses and a gift. She hugged us and seemed thrilled that we’d thought of her. We handed her the flowers and the card. All my life I’ve never understood the meretricious nature of cards. Cards seem to be a symbol in my family: We ignore the deep and sincere and cherish the superficial and fake. Someone in my family will not be there for you in your darkest moment…but they’ll give you a card for your birthday. This, in my family, and probably in many others, is seen as healthy and normal. Thus I have grown up loathing the silly superficiality of cards. And yet: I know they hold meaning for other people. Such as my mom. My sister. My father. My fiancée. Basically everyone minus me. And this isn’t about me.
The three of us sat in the room with my dad—ogling him awkwardly—eating our sandwiches (I got the “Italian Stallion” sandy) and chips. Britney always says later how uncomfortable she feels eating in front of my father because he can’t eat anything by mouth; all he can do is take protein shake liquid through his peg-tube. This is grotesque for anyone but especially for a man like my father who loves, and has loved all his life, to eat. She also feels guilty when we discuss our lives, things we can do and are doing, experiencing. She says it seems like my cat, Lucius, who’s solely indoor, when he’s outside within the gated confines of the “catio” and he sees her cat, Klaus, as he rolls around proudly and condescendingly just inches away, outside, totally free.
Britney is right, of course. I feel the same shame and guilt. And yet: What can we do? Dad wants to know what we’re doing; he wants us to congregate and eat with him; he wants us to be genuinely happy. It’d be worse if we ate away from him and silenced our conversation around him anytime it had to do with walking, eating, experiencing all the things he currently cannot. It’s sort of like being a meat-eater and complaining about animal cruelty. If you eat meat—and I do—you’re supporting animal cruelty. Just the nature of the beast. It’s the way things are. My dad is on his way out. He doesn’t want US to stop living our lives because of that. He wants us to be happy and laugh and to eat and be merry.
And yet, at the same time: Of course my father is depressed and having a very hard time. Yesterday was a testament to that. Usually he smiles a little and asks questions and participates at least a little bit. But yesterday he seemed exhausted and grim, frowning, unhappy and uncomfortable. His blue eyes searched around the room seemingly aimlessly. A few times as my mom talked I caught his eyes gazing straight up oddly at the ceiling. It was almost as if he were saying, in his head, God, take me now. Maybe he was. Who knows. Yet: He’s still mentally sharp. Still no physical pain.
They have a zoom appointment today with the oncologist to discuss the next dose of immunotherapy, which is tomorrow. This dose could wreak more havoc on his lungs and other areas a la worsening Myasthenia Gravis, but if we don’t do the dose then the cancer might just take over his lungs entirely. Truth is this might be happening right now as we speak anyway. Both my dad and mom for some reason feel that a fresh lung scan is pointless at this point, which personally I don’t understand. Why not see what’s there? But every time I’ve brought it up my mom waves it away and says, “What does a lung scan matter at this point?”
The dogs needed walking so Britney and I got them into my car and drove to the Mission and parked in the back lot and then walked up Highway 192 over the creek and through Rocky Nook campground and into a back area trail. It was fun after the Cachuma hike, getting in even more steps. The dogs enjoyed the exercise. They panted wildly. It was nice wandering amongst the tourists in the mission and along the Rose Garden. The trails were all hopelessly overgrown, except the one we used.
Britney scored major points but getting my mom a digital picture frame. Mom loved it. Dad did, too. It’s a little screen with a frame and you download an app onto your phone and you add photos and they show up within the frame. It’s actually pretty cool. Britney set it up for my mom and we played around with it for an hour, adding photos and watching them appear on the screen. Dad looked at the photos obsessively. It was a really good idea.
Then my mom revealed that her old iPhone 6 was screwing up, losing charge really fast. That’s the only point of contact for my father—all the home health aides and doctors and oncologists and O.T./P.T. specialists have only her number. So Britney and I decided to take her phone and get back in the car again and drive downtown to the Apple Store on State Street. An hour or so later—after some annoying technical issues—we came back to the house with a brand-new sparkling pink iPhone 13 mini, same number, all her data, etc. She thanked us profusely. We all chatted for a while longer. We’d started the day around 5:30am. Gotten to my folks’ around 11:30. It was now 5:30pm. We still had to drive back the 50 minutes north to Lompoc. It was Sunday. Britney had to work tomorrow.
So we hugged and said our goodbyes. My mom smiled, saying it’d been a really wonderful Mother’s Day. I was thankful and grateful for Britney, my fiancée and also a mother herself. I’d gotten her, her mother, and my mother each flowers and a card. Score, me. Britney had chosen the digital frame and it couldn’t have hit the mark any harder. Bullseye. My mom just this morning said that he’s still staring at that screen.
Dad is losing steam. Losing patience. Losing hope. He’s tired, down to his bones. He’s put up a hell of a fight. That tiny little blue flame is still there, but barely. I see it in his eyes. He’s detaching from us. He’s shifting slowly over to the other side, little by little. I don’t blame him one bit. It’s been such an incredibly draining journey. We’ll see what happens with the immunotherapy. My mom last week said she doesn’t think he should do another dose. Dad seems more in line with doing it, because really why not. The oncologist will probably be the deciding vote, and he’s almost guaranteed to want to do it. What effect will that have on his body a la the M.G.? I don’t know. What if they don’t do the therapy? The cancer will entangle whatever it can, and fast. Either way we’re not far. What does that mean? A couple weeks? A month?
Only Dad, or the cancer, knows. I had a harsh, bittersweet thought last night. Britney and I were discussing our future wedding, whenever that might be. It’d originally been planned for November of this year but, just like Morocco, we put plans for that aside for the time being. Too hectic and exhausting to plan a wedding while my father is slowly slipping his mortal coil. One thing at a time. But my thought was: Whenever that wedding occurs, Dad won’t be there. That hit me like a ton of emotional bricks. Ouch. My father. My brilliant, kind father, won’t be at my wedding. In fact, he won’t be at anything I do, ever again. He’ll soon be gone, permanently, never, ever to return. That’s the painful part of death, of saying goodbye; the total, brutal permanence. Like dropping a stone into the depths of the middle of the Atlantic Ocean; plop; just gone, forever.
Britney and I talked about my dad last night. She said something interesting and totally true. She said when he spoke there was something “special” about him, and that he seemed like he had an incredible character, that he was a genuinely good, kind, compassionate, thoughtful man. I nodded. Yes. This is true. My father is honestly one of the best human beings I’ve ever known. A truly wonderful man. It’s impossible to come up with anything in any way “bad” about my father, and that’s not me sentimentally cherry-picking because he’s dying. He’s genuinely that good. Simultaneously, I explained to Britney, he was in many ways not a good father. Those two things might seem contradictory, but they’re not. Another way of saying it might be: He wasn’t a very good father…to me. Because I was and am a very specific kind of person/human/man. (The intense, difficult kind.) I have my father inside me, no doubt, but I am much more my mother than my dad, and my dad could never tame my mother, nor really understand her, though he unquestionably loved her, and still does.
I’ll tell you one thing. I am a good man, but not anywhere near the kind of good that is my father’s character and nature. I have not always followed the rules, or the law. I am often angry, critical, hypocritical and judgmental. I can be a controlling, narcissistic asshole. I have a history of lying, cheating and stealing when I was still drinking. I was never great around women. I’ll never be half as good as my dad, and that’s just the way it is. I’m okay with that. There have been many lessons learned from my father. I suspect I still have many more lessons to learn from him still, and will continue learning them well after he’s gone. In my best moments I can be courageous and sincere, I can try to tell the truth as I best understand it. But I am a scared animal deep inside, afraid and anxious and both intensely independent and yet terrified of what YOU all think of me.
My father stands out to me as a bright shining star, an example of how to live a good life, be a good citizen, exist as a good, moral man. I don’t know if I’ll ever get anywhere close to the light he left behind, but I can always aspire to be greater.