When I first met Justine in 1999, neither of us had a television. In fact, I spent most of my 20’s without a television. There were just so many other things to do with my time. One night, Justine and I were on Harwin near Hilcroft, and we stopped into one of the Indian food dining halls that were clustered in the area, all of which have been replaced with more upscale restaurants, the term upscale in reference to what is there now perhaps an indicator of the quality of the food served at that time. The food was cheap and served cafeteria style.
“Oh. I’ve been there, ” I said to Justine.
“I have too. They have a really cheap and delicious vegetarian plate.”
I stopped the car and we went inside fully intending to take advantage of the vegetarian plate special. The man behind the counter said, “We also have this goat dish. It is very good.”
I was hungry enough that this sounded good as well. Justine agreed and our vegetarian dinner special turned into a goat dinner special. We got our to-go cartons and took them to my apartment where we ate them. It wasn’t much later that both of our stomachs started to cramp then built into a mild nausea and a stinging sensation that continued to grow until both of us were sweating. We worried that something terrible was going to happen. I can’t remember the circumstances that convinced us that it was time to go to the emergency room at Twelve Oaks Hospital, but off we went, the pain rising in intensity on the way.
We parked in the empty parking lot near the emergency entrance and walked inside. I’m pretty sure that I ate a lot more of the goat dish than Justine did, so I was in pretty bad shape. As we approached the automatic sliding doors into the waiting room, there was a trash can. I picked it up in one hand, walked through the doors and the empty waiting room to the woman at the counter.
“Can I help you?” She asked while eyeing the trash can in my hand.
“Yes.” At this point something began to happen in my stomach, and I could barely talk. “I um…” I remember breaking into a drenching sweat. “I’m gonna… um… I’m gonna be sick.”
It’s very hard to explain the reaction the woman behind the counter had to my little speech. I guess the best way to describe it would be that she was like, “Okaaay…”
I stared at her for a second, turned and stepped back through the automatic sliding doors with the trash can still in my hand. I made it two steps outside when I dropped to my knees and projectile vomited into the parking lot. I felt like a tube of toothpaste being stomped. Justine used to imitate the sound I made in her extremely comical recreation of the event over the years. It might have been something like the sound a wood chipper makes when you drop a log into it. I came to my senses on my hands and knees. The parking lot had been empty when we arrived, but now there seemed to be a shift change happening. A crowd of uniformed hospital staff was filing around at a safe distance to get to the doors behind me.
We stuck around to talk to the doctor, but the conversation was anti-climactic, “I felt very sick, and then you know, I threw up. I feel much better. But I felt very very sick when I got here.”
The doctor played with his pen, clicking it open and closed over and over again. Looking back on this conversation, I think he was doing anything in his power not to laugh in my face. Later that night, still feeling bad but knowing at least that we wouldn’t die, we drove to the 24 hour Walmart Supercenter on Dunvale and purchased a television and a VCR and spent the rest of the weekend watching movies.
I have always had a hard time vomiting. I have had food poisoning three times, two of them while living in Hong Kong, the other just described; a couple of stomach viruses; drank too much alcohol; maybe done too many drugs a couple times. The point is that I can remember every time I have ever puked. There has always been a long uncomfortable build up, an event, and then it’s over. Until I had chemo…
I have always been uncomfortable with self-promotion. Self-promotion starts with the people around me: family, friends, and acquaintances. I also understand why this is often the place that promotion must be started. How can I promote my work if I don’t feel comfortable promoting it to the people that know me? On the other hand, I would rather tell those people anything else.
For example: I would rather give you an extremely graphic account of what it was like to bleed out of my ass at home, in the ambulance, and in the emergency room. How about a description of the floor of the stall in the emergency room after I took my pants off?
I would rather promote your blog or some random stranger’s blog that I don’t care about. I would rather create a career in something less meaningful and promote that. I would rather lie in the road with my nose stuck in the corner where the cement curb meets the asphalt with warm dirty gum stuck in my hair. But I guess I draw the line at dying from Stage IV colon cancer before promoting myself.
I have a history of this kind of avoidance. I have been in several bands. I have recorded an album that I have since removed from the internet. I bet you could find it, but I’m not helping you. I have been writing fiction for forty years, but I haven’t even tried to publish any of it until a couple months ago when I started submitting it to literary journals. I have thought about publishing some of it here in this blog, but the idea makes my skin crawl. Recently, I have been consolidating all of my writing into one place, that means trying to remember the places that I have hidden my work on the internet. Sometimes I think that I have reached the end and then I find another site, another trove of work. There is a website that I found where I had hidden forty scripts from myself. I have a stack of hard disks on my desk that I keep foraging for content that I have hidden. Justine recently brought a gray plastic bin that I thought was full of her work. I delivered it to her apartment sometime this year. I have been moving that bin around for years. Whenever I opened it, I saw a couple of notebooks on the top with her handwriting. I closed it up and went about my business. She dragged it back over here a couple weeks ago, and I thought she had made a mistake. I opened it and it was full of my notebooks from the 90’s. Somehow a couple of notebooks of hers had made it in there on top hiding what was beneath. There is lot of really terrible writing in there, but there is a lot with potential. Apparently, I wrote a novel with a pen that takes up three notebooks. I don’t remember a word of it. My handwriting is almost indecipherable. I made a feature length movie a couple of years ago with my friend Troy and a whole lot of other people here in Houston. I wrote the script, bought some cameras, and went to work. Making the movie was an incredible experience. It’s edited. All I have left to do is the sound editing. I know what’s keeping me from finishing it. I’ll have to release it. Holy shit. I can’t even tell you what that does to my stomach. I’d rather do chemo. It’s a first movie. It’s supposed to be terrible. I knew that when I was making it.
So, I have a problem with self-promotion, but I also haven’t really believed in anything that I’ve done until I started writing in this blog in 2008. I started with stuff I called ‘music reviews’, but they were just stories about my life set to music. I stopped when I thought about evolving that writing into something more. Then I started doing podcasts with Troy, the Twisted Pop Podcast. Once again, I stopped when I thought about changing it. Then I started the cancer blog.
The cancer blog started as a way to update all of the people that I know about my condition without having an individual conversation with each person. I would just write about what happened to me and post the entry on Facebook. I still had the individual conversations but started at a different level. I wrote a lot more than the details of my condition. As I continued, I realized that I had a pretty decent book. I started looking into how to publish a memoir. It’s actually kind of a cliché out there in the publishing world that they don’t want your cancer memoir. It’s used as an example of what not to propose to a publisher. So, it’s funny that it’s the thing that I believe in enough to promote. I started the rewrite of the blog into a book. Then I started doing research on non-fiction book proposals, a part of which is showing a web presence, a blog with a following, site statistics and an email list, evidence of self-promotion. I conveniently had an idea for a novel and started writing it.
My nose has been bleeding for nine months. One of the chemicals in the chemotherapy cocktail is Avastin. It destroys the body’s ability to create blood vessels. This is useful in the treatment of cancer because cancer cells form into tumors and build blood vessel networks of their own. If your body can’t create blood vessels, the tumor dies. A side effect of that is the body can no longer create blood vessels of its own. The body is constantly healing; normal cell replacement, bruises, abrasions. Mucous membranes lose a lot of cells. The sinuses are constantly healing and building new blood vessels.
When I say that my nose has been bleeding for nine months, I mean that it has been sort of trickling and clotting for most of the day with three or four big bleeds that come at any time. Sometimes, I touch my nose unconsciously and the faucet starts. It takes a while to stop it.
Strangely enough, I have started a new relationship with Yolanda during this time. It seems the most unlikely thing to have ever taken place. I’m trying to imagine her perspective on the attraction.
“Hey. You’re fifty and kind of handsome – unemployed with stage 4 colon cancer. I’m in. Let’s do this.”
Yolanda is wonderful, and we have a good time with all of this. She has experience with her own bout with breast cancer and MD Anderson, so there is some common ground. Hers was caught early and she is in remission. She has become part of our small quarantine group which includes Iggy, Lucy, and myself. She has three grown kids that are off at school in the Northeast.
This round of chemotherapy was originally for six treatments spaced two weeks apart. I have already done those six treatments. I have another one scheduled for next week. I wanted them to do another two rounds since my tumor markers are down and it takes some time to build into really killing cancer cells. I wouldn’t even consider doing an extra two rounds if Yolanda weren’t here.
I have not been tolerating the new drugs in the chemotherapy regimen very well. The first treatment I vomited for two days and thought of little else. After the puking was over, I had ass-on-fire acid diarrhea for three days. I reported my experience back to the oncology team. They added another anti-nausea medication to the cocktail and told me to take Imodium. That resulted in an entire weekend of feeling nauseous but being unable to vomit. I’m not sure which was worse. The diarrhea was only slightly better. My complaints were met with yet another anti-nausea medication being added to the array of chemicals. They also gave me a different pill to take at home. These changes provided some real relief.
So, in keeping score, they give me four different IV’s of anti-nausea medications, then a steroid, then Avastin which destroys my blood vessels and makes me bleed, then irinotecan which makes me puke and have diarrhea, and then Fluorouracil which makes me feel generally ill. I take the Fluorouracil home with me in a pump that’s attached to my chest for 48 hours. When I say that the changes they made to the regimen ‘provide some relief’, I am not saying much. I am in pain for all of 72 hours after the time they start it on Friday. Then it still takes another day after that for me to really get up to speed.
Yolanda is here for the entire time making sure I am fed and comfortable. This means she is constantly experimenting with foods that I might be able to tolerate. This has resulted in a lot of wasted meals. Then she empties and cleans the red mop bucket that I use for vomiting because even after all that pharmaceutical intervention, I still vomit a couple times. I carry that bucket from room to room and then in the car on the way to and from MD Anderson when they disconnect the pump. I love that bucket.
My relationship with Yolanda started in the chemotherapy break over the summer. Perhaps Yolanda was a little too optimistic or maybe she just likes me a lot. There is the usual awkwardness of getting into a rhythm together, and the additional awkwardness of a kiss leading to the discovery of a nosebleed because she has blood on her face.
The other thing that happened with the new drugs is that I started losing my hair. I had already lost a good deal of the hair on top of my head due to balding before this whole thing started, but I like to joke that I have hair everywhere but the top of my head. If you were to see me naked in your yard at night, you’d probably call animal control. So, losing my hair has meant that I have a normal amount of body hair. Now you might call the police.
Losing hair due to chemotherapy is a ubiquitous concept. Synonymous with cancer, nearly everyone can recognize when a person has lost hair due to cancer. What they don’t tell you is how you lose the hair, that it is painful. The drugs attack the hair follicles beneath the skin often resulting in little bumps that can grow into larger sebaceous cysts. These hurt, especially on a pillow at night. I wasn’t worried about the cysts until I discovered one on my penis. That’s just fucking rude. The rest of the cysts were annoying. This one was worrisome. I exchanged a flurry of emails with the oncology team. I made jokes like, “I’d send you a picture but that would be a little weird.”
The cyst went away. Then I noticed that my eyelashes were falling out. They hurt and they itched and I hoped it would just pass. Then I got a stye on my eyelid. I assumed the blockage was from the chemotherapy and my eyelid but apparently there is no relationship. Now my eye is swollen like I’ve been in a fight. Well, maybe not that bad, but it’s annoying.
All of this, and I have been unemployed since June 30th. I have been putting myself out there. I am an expert at the remote interview. I have been in the final running for several positions but nothing has worked out. I have been in the grueling process for positions with Amazon Web Services four times. The pandemic has just made it more difficult. I almost don’t mind it with everything that I have described above. I could, and would, still go to work, but I am sick and uncomfortable often. I am blowing through my savings. Everything is month to month. I am doing my best not to panic. I am also trying to change my source of income.
About three years ago, Lucy started lessons at the Heights Violin Studio. Justine and I had separately put her on the waiting list for this studio when Lucy’s interest in studying music survived my pathetic attempts to teach her myself. Kaori Matsui is an exceptional teacher and human being. Lucy has blossomed under her tutelage, and it has been a wonderful experience for me as well since the Suzuki method is a family concept. I attend the lessons with Lucy, and I help her practice. When she doesn’t want to practice, I threaten to play her violin. This serves as a motivator because, apparently, I sound horrible.
Over this past summer, Kaori took some time off for maternity leave and recommended colleagues of hers to fill in for each of the students. We liked the teacher, but I decided to take a break as I knew the lay off date at BHP was approaching. I wanted to be sure to keep our spot at the Heights Violin Studio when Kaori came back to work. I worked with Lucy a lot through the summer, and she put a lot of work in by herself. She learned new songs from Suzuki for Violin Book 2 and spent a lot of time on bowing techniques.
At the end of the summer, the usual communications about schedules, tuition, and group classes on zoom flowed into my inbox. At the first private lesson, Kaori was a little worried about Lucy taking the summer off from lessons. In her experience, students lost a lot of ground when they didn’t have lessons. By the end of the lesson, she was super impressed and said so.
“Wow, Lucia. I have never seen a student take three months off and come back better than they were before.”
Lucy didn’t say anything, but I knew it was a big boost. She had been worried for weeks about what Kaori would think of her progress.
“I don’t know what you did, but everything is great. Your bowing is smoother. Your left hand is on the violin correctly. You even have a good cave. Very relaxed. Good job.”
The rest of the lesson proceeded, but toward the end, Kaori turned to me, “How are you?”
“I am back on chemo.”
“It’s all right. The doctors say I will probably be on some form of treatment for the rest of my life. There is the possibility of remission but with the cancer spreading that much, nothing is a guarantee. I am doing okay though. I really am. We took the summer off because I got laid off, but everything should work out.”
“I know. We know some people in the same position. It’s a tough time.”
“It really is, but something’s gotta give. I’ll figure it out.”
And I will figure it out. Don’t get me wrong, cancer is a fairly large setback. Stage 4 colon cancer is a big deal. The treatments are hard to recover from, and every one of them is its own odyssey. As I’ve said before, cancer changes everything, but I can only continue to be optimistic while coming to terms with reality. I will do the best I can to get things on track physically and financially. The last four years have been incredibly difficult: spouse sick, divorce, cancer, then the pandemic. Any one of these things is hard enough to deal with on its own, but back to back has been quite an ordeal.
Kaori sent me an email a few hours after that first lesson offering Lucy a scholarship to cover her tuition. I was stunned by that alone, but then she closed the email with more, “Another idea is, if you and Lucia feel comfortable, what do you think about having a benefit concert once the weather is cooler? I’m sure the studio would love to show their support.”
I would like to think that I have been a generous member of my community, wherever that happened to be, but I don’t think I have ever needed the generosity of a community more than I do now. In fact, without the efforts and generosity of family and friends, including my ex-wife, I don’t know where I would be right now. I certainly couldn’t take care of myself fully through the first round of surgeries and chemotherapy treatments. That being said, Kaori’s offer made me incredibly uncomfortable. As I’ve said before in this blog, I have rarely dealt with any problems in life that didn’t just require more hard work and discipline to overcome. This is not one of those problems.
My mother recently told me, in response to my discomfort with asking so much from the people in my life, “Part of being a member of a community is being able to accept help.”
It is one thing to be generous with your time and resources to help others, but it is another to accept that help when you need it, and I need it. I am already accepting some of that help from people that are close to me. Wouldn’t it be insulting not to accept that help from others? I thought a lot and then talked to Lucy about it.
“Oh no. I am extremely uncomfortable with that idea.”
“I know. I am too, but we kind of need it. And we are already accepting help from some.”
“I know. But…”
“All right. Tell me what you’re problem is with it.”
Lucy came out with this pretty quickly, “You aren’t dead yet. You aren’t even close really. I don’t want people looking at me differently at the school or always asking how you are. Or asking me how I’m dealing with it.” This last part came with a disgusted look.
“I know. We’re way more open and okay with my mortality than people usually are.”
“And I want to keep it that way. I don’t want to be afraid to joke about death and give you a hard time about being sick from chemo.”
She is my daughter, isn’t she? And she is right. In our home, there is a lot of psychological and spiritual levity around the subject of cancer and mortality. When Iggy or Lucy don’t do something that I ask them to do, I like to deliver lines like this in my best New Jersey accent, “Oh come on. I got cansa.”
I’ve used it enough that they like to dish it right back at me, “Always whining about cansa! Everybody’s pulling their own weight around here.”
We know that cancer is serious, but there is no use being sad about it all the time. I don’t want the word to have more power than it already does. Cancer needs to be knocked down a notch. I’ll do my best fighting it. Hope for the best. Plan for the worst. I tried to reassure Lucy, but she was having none of it. It took three conversations with Kaori to get her onboard. It was a conversation about her recital piece with Kaori that finally convinced her.
“I’m going to play the theme song to Spirited Away.” She told me after a meeting with Kaori. “You’re going to accompany me on the guitar or piano and we’re going to make a video.”
Spirited Away is a Studio Ghibli movie that has meant a lot to our family. Complex themes of greed, gluttony, and kindness in a fantasy world where commerce and the environment collide. It can be scary for little kids, and Lucy often talks about how terrified she is of some of the characters, as she did that night as we watched it together.
Over the following weeks, Kaori began exploring the event. She had seen some concerts that her neighbor, Margaret, had hosted on her porch, part of a series called “Tunes on Tenth” that she had started to provide a stage for the musicians in the neighborhood that were out of work due to the pandemic. When Kaori had the idea for the benefit, her vision was that it would take place on Margaret’s porch. Kaori contacted Margaret and she was excited to host the event. Then she sent an email to the parents of The Heights Violin Studio to announce the event and ask for volunteers. The response was overwhelming, and I should say, not too surprising, the parents of the Height Violin Studio are generous, kind, and self-organizing. The kids were also excited to perform to show that they cared. Community is an important facet of the Suzuki method, and The Heights Violin Studio certainly embodies that ideal.
I attended the first Zoom meeting about the concert. The parents were enthusiastic and had a lot of ideas. I sat back and watched. How exactly should I behave in a meeting to organize a concert intended to benefit me and my family? I said a few words at the end to express my gratitude, but I must admit that I felt my words fell a little short of what I was feeling. I was surprised to learn that a few of the parents had actually followed the link to this blog that was included in the email to read about my experience.
“I was really moved. I work at MD Anderson. It was really great to read about your experience. And it’s funny. I hope you are able to get it published as a book.”
The next day, at the start of yet another round of chemotherapy, one of the parents contacted me via text to express her support. We discussed community and books and the benefit concert. Another connection made out of the wreckage of cancer. I realized that this benefit was bigger than me, that I was just going to have to stand back and let them do their thing.
A few days later, Kaori told me that the Houston Chronicle was covering the benefit concert and they wanted to interview me. I talked to Lindsay Peyton last week. I don’t know when the article will be out. All of my procrastinating about rebranding my site to promote myself came back to haunt me. I might as well use the coverage to get more followers and help to land me a book deal. Perhaps this could all lead to something. I said as much to Lindsay Peyton.
“I have been reading your blog. You’ve been doing this a long time.”
“Yes. I have. It has had different incarnations over the years.”
“Yes. I went back and read some of the music entries. We have some of the same tastes in music.”
“Really? And you went back that far?”
“Yeah. I haven’t had time to read all of it because there’s a lot there, but I like what I’ve seen.”
“Well I’m trying to rebrand it and organize it to get everything in order. You know. You’re a writer. If you want to move forward with publishing, you always hear the same things. Build your web presence. Write regularly in a blog. Promote yourself. Build an email list. All of that is super uncomfortable.”
“Oh. I know. I know.”
“It may seem a little opportunistic, but I’m in trouble here.”
“No. Don’t think of it that way. It’s opportunity.”
I laughed, “I guess it’s only a couple of letters off.”
I have been writing a lot in the last couple of months, even more than I was during the first rounds of chemotherapy. For some reason, I can’t sleep past 5:30am. I write for a couple hours before everyone wakes up. I am writing a novel. I have written several short stories and submitted them to literary journals. I have been working on pitching the subject of the cancer blog as a memoir, but as I work on that as a pitch, I come across the usual advice for writers in the digital age: write in a blog and develop a regular audience; build an email list; develop a social media presence and following. So, many of you have seen my requests to ‘Like’ my Facebook page and join the email list on this blog. As uncomfortable as it makes me to post this stuff, I am going to do it.
This is a link to the GoFundMe for the benefit concert hosted by the Heights Violin Studio. From the page: “We will be hosting a masked and socially distanced porch concert on November 8th at 4pm at the corner of Waverly and 10th Street in Houston Heights.”
This is a link to Become a Patron! Patreon is a membership platform that makes it easy for artists and creators to get paid. I will be posting something in this blog every week from here on. Cancer Memoir, Fiction, Music, Essays, Book and Music Reviews. Whatever.
And of course, regardless of whether you give or become a patron, please join the email list. This isn’t a link for you to ignore. Put your email in my fucking email list. Maybe that’s what I’ll do to become more comfortable with self-promotion. I’ll resort to threats. Waterboarding?