It’s been months since the psychedelic journeys and I feel as good as I’ve felt in 3 years. I’m engaging in activities just for the sake of themselves, I’m not battling or machinating over what the purpose of something is – I’m just being, doing, etc., even running outside on a regular basis, despite my blindness. I just do it. I manage to knock Alyssa up. She begins to have some morning sickness. Oddly enough I share in this, or what I feel at the time to be a “sympathetic pregnancy”. It’s a thing, it’s a thing I swear, even gotta term, couvade syndrome.

At first it seems like a joke. But Alyssa’s symptoms continue, and the pregnancy doesn’t last. This is our third failed pregnancy. Alyssa is demoralized. I don’t know if you’ve ever experienced one Dear Reader, but they can be traumatic and engender a complete sense of helplessness as you just have to wait it out and watch it happen. I believe it was quite traumatic for Alyssa to have to go through this for a number of reasons – a desire to have a baby, like anyone does, a sense of unjustified failure plus time pressure of her own age and my disease, We’ve planned to have a child whether I live or die. I’m good with it,..mostly. To my shame, it’s a combined feeling of despair and relief as I think to myself, “What if all of this (my disease) were to come back during a successful pregnancy?” How difficult it would be? This is part of what the psychological impact of the disease has been. I have this foreshortened sense of the future that no matter how much I try to ignore, always manages to creep in and create worry.

I feel so hopeless that I resort to just lying on the living room floor while Alyssa is on the couch as we both go through our own agony, hers more physically worse than mine, emotionally too. I feel time running out for us.

It takes several weeks, but Alyssa seems to bounce back and feel more like herself.

Strangely, however, my symptoms of nausea continue, along with headaches and increasing pain in my back and legs. This eventually leads to a new diagnosis of leptomeningeal disease (LMD). The melanoma had spread from my brain and recurred in a new form. This is a bad thing; most people tend to last weeks or months with an LMD diagnosis. Ask Google (or don’t).

I am terrified by this news. It feels ironic that as soon as I start to get back to living, bad things happen again. The pathogenic belief that I am to be punished for good fortune creeps up… I identify this monster and quickly toss it into the garbage bin of my psyche, I don’t buy into it… but I smell it.

I begin listening to Ram Das on repeat. Like 300 times a day. I listen to him over and over again, from the time I wake up until the time I go to bed. I don’t know what else to do.

At the recommendation of doctors, I elect to participate in a clinical trial which will require me to have another procedure in my brain to install an “Ommaya Reservoir,” this is a port through which I will receive immunotherapy treatment directly into my spinal fluid through the top of my brain. My scalp now has the look of a jigsaw puzzle. I’m the 10th person in the clinical trial.

The trial will require me to be in Texas for two months straight, then every other week for treatment. We set out across the southwest in our car on a Saturday morning from San Francisco to drive the 1,927 miles to Houston.

Despite the knowledge of why I am making this trip, I desperately want to make it a fun experience, more about a road trip with Alyssa, exploring. From the moment we decide to drive, I’m determined not to lose what I’ve gained through my work with Ivan. Determined to ignore the pull in my mind to mope, to ruminate, to wallow. Although I am committed to find joy, it is hard to resist the habit.

“I’m worried my leg is getting weaker.” I say after about an hour in the car, giving in. We’re just outside San Francisco at this point.

“I know honey. It’s ok. We’re going get you to a place where they’re gonna take care of it.”

“It’s not ok! It’s not.” I both hate it and am reassured when she tells me things are going to be ok. “What if it doesn’t work? They’ve done this shit with like 9 people! I’m literally number 10! It hasn’t worked with everyone, people have died, more than lived.”

“We just gotta believe that things are going to work out. You have to stay positive.”

“I know, but…” calming down some, “…it’s just, it’s just hard. I’m afraid.”

“I’m afraid too. But I know you’re going to be ok. I just know it.” Taking her right hand off the wheel, putting it on my leg. “I just feel it. I can’t explain it it. I just feel it so deeply, that you’re going to be ok. We’ve got a lot more years together.”

I’m staring out the passenger side window. Just staring off into space, hoping she’s right. The tumor in my spine has made my upper thigh completely numb so I can’t even feel her reassurance. I fight back tears at yet another reminder. Trying to just choose to believe, as Northern California gradually transforms into Southern California.

We hit our first overnight stop in Palm Desert approximately 9 hours after setting out from San Francisco. It’s a stylish, swanky, modern, chic place with a funky restaurant and bar that Alyssa says is “well appointed.” It’s such a cool hotel that it makes me wish all the more that I was there for a different reason. Before we get out of the car to check in, I get Alyssa to cover my Ommaya stitches with gauze so I can put a hat on, before wobbling on with my cane while she carries everything. I feel ghastly. It’s hard not to feel constantly humiliated at my weakened condition. It doesn’t matter that Alyssa tells me I shouldn’t. We check in smoothly enough and I make my way past the pool, then push myself up the stairs, noting the decreasing strength in my legs. It’s frightening to literally feel yourself declining. I keep it to myself, this time.

In the hotel room, I take my medication right away in order to start the “one-hour no food clock” so that we can eat dinner at a reasonable hour.

“You want to go to the restaurant?” Alyssa asks.

“Yeah.” I say. Though I actually feel more like moping in the room, I keep it to myself again, resolving instead to try to be a guy she would want to be with at this swanky hotel restaurant-bar. But that no longer feels like me. I’m no longer that guy, and the whole dinner to me, feels like an affair she’s having with someone else.

Dinner goes quietly, quickly, but in the end I’m glad I went rather than just sitting in the room. I begin to believe that I have more and more control over my mental state of being, and part of that control involves simply engaging the world, even when I often don’t want to. I’m more empowered. The next day, we’re up early to get on the road.

“I’m taking the last of my steroids.” I say, swallowing my 1mg dexamethasone pill.

“Ok, good.”

“We’ll see how this goes. The doc said to watch for any sort of resurgence of symptoms as I ween off the ‘roids.”

“Ok, we’ll just be on the look out.”

“I also just got a message that I’m not starting the immunotherapy this week. I have to do all the pre-treatment MRI scans etc. so they can get a baseline on me, before they start pumping me full of the new drugs.”

“Really? I thought you were getting started that first week, right when we get there?”

“Nope, and I’m kinda worried because I’ve stopped my cancer meds like they asked. That means I’m gonna be on nothing for nearly two weeks. Not the tumor meds and not the steroids. Climbing without a rope. There’s going to be nothing keeping the shit at bay.”

“Ok, You need to call them or send them a message about that. Let’s call Sarah. She’s in charge of coordinating.”

“Ok.” It’s amazing to me that I hadn’t thought to make that simple call, but I hadn’t. Under all this stress and dread, your mind just stops functioning effectively to save you.

Ultimately, I call Sarah and explain my issue. She tells me to go back on my meds for the rest of this week, says I’ll go back off them 7 days before I start the immunotherapy. Simple.

We eat a quick breakfast and get on the road, headed now for Tucson, Arizona. While I’m in too deep a state of constant dread to say I’m excited, I am at least interested. I’ve never been to any of the Southwest parts of the United States. The scenery quickly becomes beautiful rocky cliffs and various clumps of impressive cacti.

“I want a turquoise ring. Like the Indians make down here.” I say.

“Ok, let’s get you a turquoise ring.”

“Where can I get that, Arizona or New Mexico?

“I’m not sure, probably both.”

Time melts away through an air conditioned window and we arrive late afternoon to our hotel in the shadows of the Catalinas, one of four mountain ranges outside of Tucson. Once again I’m presented with the option to engage in life, or to not.

“Do [ I ] want to go for a dip in the swimming pool?” My immediate knee-jerk reaction is to say “No, I’ll stay in the hotel.” I’m ashamed of my body, of every way I look, of all the weight I’ve lost. The ghastly stitches, the dried crusted blood on my head from the Ommaya surgery. The pull to hide is very strong. “Yeah, let’s go.” Most people aren’t tall enough to see the scars on top of my head, but I expect to be in the pool where everyone can look down at me. I solve this problem by wearing my hat in the pool.

We arrive at the pool and much to my vexation other guests are already there. Hastily, I enter the pool to cover myself as much as possible, leaving my hat on. I feel slightly uneasy, especially because I expect, knowing Alyssa, we are going to have a fairly extensive conversation with these people. Ultimately, these two guests seem to have more to hide than I do, as I suspect they are having an extramarital tryst. Some of my trepidation dissolves in the face of this new theatre.

Fairly quickly, these guests leave and make their way down to the hot tub while Alyssa and I have a beer in the pool. The sun was slowly setting. It was beautiful. Alyssa spends 10 minutes chirping with the birds. We then decide to go get dressed for dinner.

A storm was coming in.

At dinner, we encounter three couples. One straight Mormon couple celebrating their anniversary. One gay couple doing the same. And the extramarital tryst “couple” doing… “something.” My amusement continues as the female participant of the tryst carries on flagrantly with the rouse in the most obvious way, repeatedly informing staff and guest alike that they are “just friends” and that her real boyfriend would be there soon enough. He never did arrive. The phrase “Thou doth protest too much” played on repeat in my mind. It was like an Amy Winehouse video but with bad music.

The evening becomes even more interesting to me as I get to experience for the first time one of the southwest’s thunderstorms. This has the effect of canceling out all of the other couples except for us. We finish dinner and as we leave the restaurant I identify a change in the smell of the air. Alyssa informs me that this can be described as “petrichor,” and it makes me joyful to know there is even a name for the earthy scent that is produced when rain falls on dry soil. It is the smell that is of the beginnings of new life.

It’s nice to appreciate little things again.

At the room, we decide to open the back door which views the terrain so that we can continue to experience the petrichor. Within seconds, we both feel surrounded by desert bugs rushing in to escape the storm that has resumed. It’s worth paying this price of admission to feel excited and consumed by moment, and I forget why I am there to begin with. Quickly we close the door to prevent further infestation, turn out the lights and climb into bed. However, we notice a spider bigger than the size of my hand crawling across the ceiling that neither of us could possibly allow to stay over. Alyssa freaks out, jumps out of bed and safely transports it back outside.

The next morning we’re on the pavement before the sun is. During the drive, I start noticing billboards that read “The Thing.” I become enthralled with these.

It is self-described as a museum, and I know that it is just a tourist trap, but I find it amusing. It’s blatant, it’s garish, and it beckons me.

The drive continues to be pleasant, although I find it hard not to fall into worry about my weakening leg and the increasing numbness I feel in it. Sometimes I can keep this worry to myself and talk about something else, but sometimes I can’t.

Please understand, Dear Reader, it’s not that I feel like I can’t talk about what worries me, or that someone should not talk about things that are troublesome…I think there is a point to all of this. I also think there is a point beyond which it becomes fruitless rumination and I am trying to continue to learn to balance it.

At some point we see the exit sign for The Thing and I request Alyssa to take me there in my Galactic Eggplant steed. Alyssa reminds me that our car is actually the color “Galactic Aqua.”

“Whatever” I say, “Bring me there.”

The Thing roadside stop consists of a plethora of bad souvenirs and a few pretty cool local and regional handicrafts, and a room in the back of the building in which lies “The Thing.” I am most interested in a large turquoise ring, and begin looking for the biggest, most badass one to fit my forefinger. Alyssa gets the woman behind the counter to help me try several on before we find the perfect fitting ring, which is Zuni-made, and consists of bright turquoise, small pieces of coral and onyx. And it is the perfect ring for me:

I find my curiosity about The Thing is waning, and it wanes even more when I learn there is a $5 entrance fee to the back room to see it. I tell Alyssa, “What a bunch of bullshit” and she says, “Oh, I just slipped back there when there was nobody manning the entrance and there was nothing in there but some dinosaur and alien figures and weird old western paraphernalia.”

“Let’s get the fuck outta here.”

Like Thelma and Louise, we bail out of that tourist trap and head to El Paso. It’s 118 degrees outside.

We pull into El Paso in the immediate aftermath of a mass shooting.

It dawns on me that as I am going through all of this, life is carrying on for everybody else in the world, including other people’s personal tragedies and losses. It’s the kind of information I’ve been trying to avoid for weeks out of the feeling that I can’t tolerate one more thing besides what’s going on with me.

Bad things happen to everybody every day, all of the time, and in some way, this connects us. Thinking about this reduces my self-importance and makes be contemplate that there is nothing special about any single tragedy. We all suffer tragedy amidst our day-to-day existence, much of it senseless. I can’t stop my cancer from spreading any more than I could have known about or stopped this shooting.

Anderson Cooper, along with other notable media figures, are staying at our hotel to cover the shooting. Alyssa sees him in the restaurant while I’m on a call in the room with a patient. She tells me she is aware of quelling her feelings of fandom in light of the terrible situation.

All I know is that even when I learned the shooting had happened, one of the things I longed for was to watch someone else’s tragedy without having to worry about my own. Voyeur, not Participant. This makes me feel guilty and selfish.

What can I tell you about the drive from El Paso to Houston? It is one fraught with the danger of roadkill and not a lot else. It’s not scenic. Just long. Like nearly 14 hours long.

During this longer, desolate drive, I find myself worrying about me, the mass shooting, the state of America. I dip into a darker place. I start experiencing a little more pain, numbness in certain parts of my body, and a discernible rash has developed around my abdomen. By the time I roll into Houston, I’m not feeling so good. The cumulative effect of all of my symptoms are starting to weigh on me. The knowledge of all of this creates anxiety because I know the first full week in Houston is all about pre-treatment testing instead of actual treatment and I fear the absence of action to fight this disease.