I wrote this string quartet posted above for you. It still needs work, but you should hit the play button. Imagine I wrote this for you because I did. I write something like it every day and post it for my Patreon subscribers. You should subscribe.
I had this whole idea about starting this blog post off talking about software development estimates, but I bored myself so much that I had to stop. I was having this conversation with Yolanda where I was telling her about a guy I used to work with. In response to questions about how long a project would take, he would say, “How long is a piece of string?”
I used to say something like that as well, “If the software were already invented, we would buy it. It would be cheaper. You might as well be asking how long it takes to invent something.”
Yolanda said, “You should describe this in your next blog entry.”
I saw a blog entry emerge in my head where I began with a fictional conversation between this friend and a typical customer. I started writing that blog entry. This hypothetical conversation works out like this:
“How long is a piece of string?”
“I don’t know. Show me the piece of string, and I’ll measure it.”
“That’s the whole point. If I had the piece of string, I would measure it myself, but I don’t have it. I would have to go cut it first. Then I can measure it. But if I had the piece of string already, I wouldn’t need to measure it.”
It was a way to illustrate that we didn’t know how long it would take to invent something. We would give them an estimate anyway, but it was a way to emphasize that we were only guessing. “I don’t know” doesn’t get a budget. Six months gets a budget. Better yet, “We need it done by a specific date.” The specific date gets a budget. We can get it done by that date. It doesn’t matter when it is. We’ll deliver 1.0 and then iterate through the bugs. It’s not ideal.
“How long will it take?”
“How long is a piece of string?”
“What does that mean?”
“When do you need it? That’s how long.”
“Best possible news. Mostly stable on all tumors.”
That was my Facebook post from early January. It was one of my most liked posts ever. I am guessing it was also one of the most misinterpreted.
“So, I heard the cancer is all gone. You’re all better?”
Far from it, but that is a funny take on it. Going into the end of the year, there were only two FDA approved treatments for colon cancer that I had not tried. Lonsurf and Regorafenib. Lonsurf has a 50% chance of working at all, and when it does work, it could keep tumors from growing for up to six months. Regorafenib has a 40% chance of working at all, and when it does work, it could keep tumors from growing for up to four months. Both have horrific side effects. I chose Lonsurf.
Lonsurf is administered with Avastin. As I’ve explained here in this blog, Avastin is a drug that prevents your body from creating blood vessel networks. This can starve the tumors of the blood supply they need to grow. I don’t know how Lonsurf works really. This cocktail is administered in a twenty-eight day cycle. On the first day, Avastin is administered intravenously. Lonsurf is taken by pill for five days. Then two days off, another five days of Lonsurf pills, two days off, then another Avastin infusion. Then two weeks off.
For much of the two weeks, I was puking, and then for a week afterward, I was puking and shitting. It’s horrible. Maybe the worst of the drugs so far. One week out of every month I was feeling okay. When the CT scan results came back in early January, I got the best possible news on this drug cocktail. The tumors hadn’t grown. They were still alive, and I was sick as hell.
Lonsurf is terrible for many reasons, but the daily psychological battle is the worst. On the first day, I would take the pills and feel mostly nothing until I took the second dose of pills twelve hours later. Then the nausea and fatigue would set in. By the end of the second day, I would start to take the anti-nausea medication.
On the morning of the third day, taking the pills was a psychological battle. I already felt bad, but the next dose would be where the illness really kicked in. I took the pills and the rest of the day was miserable. Hours before the second dose on the third day, I would be questioning whether I was capable of taking them. For the rest of the cycle, I would think about the next dose for hours before taking them. I would talk myself out of taking them. Then I would talk myself into taking them. Sometimes, I would start puking just thinking about taking them. I threw up a couple of doses. I skipped a couple of doses. Even with all of that, the drugs worked for a few months.
When the results of the next CT scan showed that the drugs weren’t working anymore, I was relieved. That relief was sickening. The truth is that I would endure ten years of side effects like that if it kept the cancer from growing. Yes, my life was limited, but I was still going to classes at Berklee online, making music, writing, and making time for my family. Each of those things was difficult to do, an act of will, but it is enough to live. I would continue taking it, but if it stops working, it also means that I don’t have to be sick like that. It’s an awful relief.
That leaves only one FDA approved drug left for me to try, Regorafenib. The description of the side effects sounds even worse than Lonsurf: dry, cracking skin; elevated blood pressure; changes in voice, hoarseness; weakness and fatigue; swelling of the lining of the mouth and bowels. For a 40% chance of working at all and only for a few months of inhibited growth.
“You can also see what is available in the drug trials again.”
There is a trade-off here. One that I don’t think is fully understood until you have to think about it every day. I know that people have the best of intentions and their own lives, but the question that everyone wants answered is: When will you get better? The only truthful soundbite answer is, “Never.”
I have tried to finesse the answer to this question in this blog for some time, but I don’t think the subtlety is easily absorbed. I don’t think the hard answer is easily absorbed. I have stage 4 colon cancer. Yes, you know somebody, or heard a story about someone, that was treated for stage 4 colon cancer and they went into remission. This is also a misinterpreted word, remission. It means the cancer is not measurable in the body at this time. It’s still there. The mutations that created the tumors are still floating around in there. They just haven’t taken root in a measurable way. Some people stay in remission for years, perhaps for the rest of their lives until something else kills them, but it is still there.
I have a chronic illness called cancer, and it isn’t going to be cured. That doesn’t mean I am going to die today. You know people with diabetes. Cancer kills people. So does diabetes.
As Dr. Dumbrava said, “No one asks a person with diabetes when they will be cured. Cancer is a chronic illness.”
So, there is one more FDA approved drug. Regorafenib. I’d rather take my chances in drug trials. What happens when I run out of drug trials? I don’t know, but Dr. Dumbrava tells me that MD Anderson is currently participating in 250 drug trial. These drugs are not all for colon cancer, but there are plenty that are. Will one of these drugs put me into remission? I hope so. For now, I live by the numbers.
“One of the nodules in your lungs grew to 3.1 centimeters and another to 2.8 centimeters.”
“And there are still the uncountable number of smaller ones all growing by some small amount.” I was imagining how crowded it must be in my lungs. “And then there is the one in my liver that has grown by some amount. And all of the smaller ones in the abdominal wall.”
It’s overwhelming to think about all of those growths. I have always wondered what inoperable means, but I get it now. I have too many smaller growths to surgically remove. The obvious question, “Okay, why don’t they just remove the larger ones.” The benefit is outweighed by other factors. I would have to be off of all treatments to prepare for the surgery and then for some time after the surgery. Unchecked growth in the smaller nodules could mean that there is more spread during that time.
“What is your ideal life? Don’t take into consideration what you would do to make a living. Just think about what your daily life would look like.”
I asked this question of my kids when we were celebrating Iggy’s birthday. I have found that it is hard to separate geography and personal economics from the answer. I have been asking this question of myself and other people for years.
“Well, I don’t want to live in New York City. Too many people. It would be nice to be in the mountains somewhere, but how do you make a living?”
“I just don’t ever want to live in Britain.”
“No. Just what does your ideal life look like. What do you see when you look out the window? What does a typical morning look like?”
Lucy seemed to light up, “Some small town in Europe along the Mediterranean.”
“What would you do every day? Would you get up and go swimming?”
“No. I just want to look at it.”
“You used to say that you wanted to live in Prague after we visited in 2017.”
“I like Prague, but I don’t want to live away from the ocean.”
“I get that. I don’t want to be landlocked either. I figured that out when I lived in Albuquerque. I don’t like living that far from the ocean.”
I love Houston. Most of the people that I love I have met here. My family is here. I am lucky that I live in the same city with MD Anderson. There are so many people that fly from other countries or have to drive from rural Texas. I am at MD Anderson so often, I wouldn’t be able to keep up with treatments if I lived somewhere else. But there is nothing to look at outside my window. I would love to be able to walk to a café for a cup of coffee without being drenched in sweat by the time I get there, to have something interesting to look at along the way.
There are great museums, music performances, plays, some cool places to visit, but I hardly get out anymore since cancer and the pandemic. Everything feels a thousand miles away. I have lived in other places that were more interesting to be and felt homesick for Houston. Still, how do I answer the question of what would I like my life to look like?
I would get up and see things outside my window that were interesting to look at: mountains, beach, a beautifully walkable city. I would walk somewhere to get a cup of coffee. I would linger outside because it was pleasant to be there.
I think this question has become important to me again because I am wondering if that is a decision I will be able to make again in this lifetime. I am not sure that I will. My life is pretty ideal right now despite the cancer, but I like thinking about what I would like my life to look like.
I moved to Boston with my first wife, Lisa, in 1989 to go to Berklee College of Music. She was going to Emerson. We got married to emancipate ourselves from our parents for financial aid reasons, which you can’t do anymore. That and we were young and dumb and knew everything. I had not been accepted. I had barely turned the application in on time. I remember people asking before we left Houston if I had been accepted.
“No. But I’m going.”
My application was denied that summer. I called the admissions department and bugged them until they agreed to meet with me. I don’t remember what I said to make this happen, but I think it was something like, “Can I speak to an admissions administrator about this?”
It took a lot of phone calls and showing up at the admissions office. I don’t even know if this would work now. I don’t know how it worked then, but someone eventually agreed to meet with me. A very nice woman read questions from a piece of paper. It was some kind of interview process. I must not have been the first person to attempt this.
I interrupted her, “These seem very formulaic.”
“They are. It’s just some standard questions we ask people in your situation.”
I didn’t really understand what my situation was, “I’m sure the questions are all really well thought out, but I’m just going to keep applying until I get in.”
She laughed. She kept asking the questions and writing the answers down, but she looked at me when she was talking. She also kept stifling a laugh between questions. Two weeks later I got an acceptance letter. I don’t know whether what I said helped. Later, I found out that it wasn’t that hard to get in to Berklee. At least that was the word among students, but my high school transcript was pretty bad. I dropped out and got a GED. I also never had any formal music training at all. My audition was a train wreck. The fourth guitar lesson of my entire life was at my first day of school at Berklee.
I have always had an inner soundtrack. Sometimes that music is stuff that I love that just plays in my head, but more often than not, it is just original music. In early childhood, it was just there. I played guitar and sang when I was three. There are Super 8 videos of this. Unfortunately, there is no sound. I have been told that I would make people listen to me. At family gatherings, I would stop playing and tell people that they had to stop talking and listen. Then I would start again from the beginning. A couple months ago, I watched the Nina Simone documentary. In one clip, she stops playing and tells some people to stop talking. I’m no Nina Simone, but I thought it was funny thinking about a four or five year old me telling everyone to stop talking while I played.
When I got more serious about music as a teenager, I paid more attention to the original music in my inner soundtrack. I wanted to translate that music to my hands on an instrument, but I was incapable of doing that. It wasn’t until I got to Berklee that I started learning the tools for getting that out.
I started writing everything down on staff paper. I bought binders and punched holes. Often I wasn’t sure how a piece would sound, so I would find a student that played that instrument. I was lucky to live in a building that had musicians from New England Conservatory, so I had access to orchestra players and jazz musicians and rock players. I embarrassed myself quite a bit. I had a work-study job in the guitar department. I found out that they had ensembles of just guitarists. The professors gladly had my music played as there just aren’t that many pieces for ten guitars.
After two and a half years, I burned out and took some time off. I didn’t expect it to be thirty years. I kept writing music for a while, but I realized that it was never going to be played. So, I stopped writing. Over the years, I tried using sample packs to orchestrate the music digitally. It never sounded right. I would lose interest. That and I had a career and kids. That will slow down your creative impulses.
With cancer, I can’t work. I qualified for disability, so I stay home. Now that I am in drug trials, I don’t have much control over my schedule. Two weeks ago, I had two procedures done under anesthesia. One of them, a biopsy of the tumor in my liver, I found out about the day before it happened. There is no way I could fit any job around this schedule, but I can squeeze online classes and homework into it.
Now I am creating music every day. The sample packs for all instruments have gotten so much better. Sometimes, it’s hard to tell that they are samples and not real strings. For an hour every day, I write and record something. I send it out to all of the Patreon subscribers at any subscription level every day. (Yes, I’m selling the Patreon subscription a bit here. You should join. I’ll send you music every day.) I am in a string quartet phase right now like the piece at the beginning of this blog entry, but I also have other pieces like this one.
A couple entries back, I talked about how a paper was written fifteen years ago about a proposed treatment for cancer that involved genetic mutation suppression. That led to a drug trial that I was involved in last summer that didn’t work. I found out recently that they figured out that more of the people involved in that study are showing good results at a dose nearly triple the one that I was on, which at the time was the highest dose they were giving.
What were you doing fifteen years ago? Thirty years ago I was struggling to find a way to get my music heard. Some projects take a long time. If someone had told me that I would be in my 50’s before I would be even close to satisfied with any of the music that I produced, I think I would have given up. To a twenty-two year old, fifty-two is nearly dead.
The drugs that I am on right now are an immunotherapy. I did an immunotherapy at the end of last summer. It didn’t work at all. I knew it wasn’t working from the beginning of that trial. This is a monoclonal antibody that marks the cancer cells as a target for the immune system. I feel this one doing something, at least for now. There is no way to know until the scans at the end of May. I am excited and skeptical.
How long will it take for science to develop a cure for my combination of mutations that make up my case of colon cancer? How long will it take for me to develop the skills and find the tools necessary to bring my inner music into the world? How long will it take for me to find a publisher for this book? How much longer do I have left to live? How long is a piece of string?
I told Dr. Dumbrava, “We are just buying time. Maybe something will work for a while, and something else will work for a while, and something else will fail and the tumors will get bigger, and then something will work for a while. Then something will actually work and put me in remission for a while.”
“Yes. That is the goal.”
How long is a piece of string?