“And all the while the distance grows between you and me. I do not understand.”In the Blood of Eden, Peter Gabriel
The universe is expanding at an ever increasing rate. As we are looking at the stars in the sky, they are growing more distant from us. The universe is not growing into some space that already existed, the expansion creates space itself.
It’s hard to get a real grasp on what this actually means. I spend an inordinate amount of time thinking about it. Trying to understand the universe as a whole is just as difficult as it is to try to understand its parts. There is so much that is just unknowable. I get the sense that no matter how far we reach back in time through the observable universe, there will just be more questions.
I talked to my friend Jarred about this once in his office when we worked at Chesapeake. We were on the same development team. We were working on a geology application, a complicated tangle of data interpretations. Somehow, we got on the subject of the distance to stars and how long it took for the light from those stars to reach us.
“I don’t know why, but the concept bothers me,” Jarred said. He always had the door closed and lights out. It was always a welcome break from the noise of our hallway to sit in the dark talking about geology and then meander into dozens of other topics.
“What do you mean?”
“The light from a star in the sky takes years to get to us. Whatever we are seeing is not what is happening right now on that star.”
“Yeah. I guess that is weird. The star could have already blown up and be completely gone.”
“Yeah. I don’t know if that’s it, but I do know the concept bothers me.”
“Is it something to do with it being inaccurate?”
“No. I don’t think so. It just bothers me.”
Space bothers me like that. The universe is expanding. It’s like blowing air into a balloon. Imagine that whatever is outside of the balloon doesn’t exist. Then blow more air into the balloon. Where did all that space come from? Is it possible to overcome that increased interstellar distance? We can’t overcome that distance now. What would it be like to have to chase a star at ever increasing distances? Wormholes that open in one spot and connect to another, particles that can be transported, ions that pass through planets as if they weren’t there… Look at a topographical map and imagine that it is expanding in every direction at the same time. Where is anything if the universe is expanding?
I had an MRI of my brain just before Christmas. I had been feeling dizzy off and on for some time. Because the procedure caused me so much anxiety, I had to be completely anesthetized. They strapped my head down to a table with a mask, put ear plugs in my ears (MRI’s are loud), and packed my head with padding so I wouldn’t move. I don’t remember falling asleep. It was just over.
It’s a strange thing to wake up from anesthesia. I went to sleep in the MRI room and woke up in a recovery room. I had them call Yolanda to pick me up. She was waiting nearby. Because of COVID safety protocols, no one is allowed to bring visitors, unless the patient is a child or completely disabled. A medical assistant pushed me to the drop-off/pick-up area in a wheelchair. A couple days later, my mother asked about the results.
“I don’t know. It’s the holidays. I am just glad the MRI itself is over. I almost don’t care what the result is. If I had a brain tumor, someone would have called me by now.”
I was on chemo at the time. It was December 23. Then I was on chemo again on January 4.
“What number is this?” the nurse asked.
“What do you mean?”
“How many treatments have you had?”
“I don’t know. It’s somewhere in the upper 20’s.”
“You don’t look like you’re on chemo.”
“I’ve heard that a lot.”
“It’s true. You’re bloodwork doesn’t look like you’re on chemo either.”
“Well let me tell you, it certainly feels like chemo.”
Then I had a CT Scan on January 12, three days before my fifty-first birthday. The radiologist that performed the CT Scan was very nice.
“How long have you been getting treatments?”
“That’s a long time. How many chemo treatments?”
“I lost count.”
“So. The CT Scan calls for an anal contrast. Do you want to do that part?”
“Do I?” I asked with feigned excitement.
She laughed, “Did you have diarrhea after you had the Barium drink?”
“No. You know. I get asked whether I want to do the anal contrast every time I get a CT Scan. Do some people refuse?”
“Yeah. Sometimes. But I asked about the diarrhea because if the Barium drink causes diarrhea then there is no need to give you the enema because the contrast would have worked its way through your system.”
“Oh. I see. You’re trying to get out of it.”
She laughed and then shoved a tube up my ass. I had a zoom call the next day with McKenzie, one of Dr. Kee’s Physician’s Assistants.
“Dr. Kee has gone to inpatient duty now because of the pandemic. He won’t be joining us today.”
“Oh wow. So he’s dealing with the crisis now too.”
“Yes. He’s stretched a little thin right now.”
“I’m sure he is.”
“So looking at your scan. It looks pretty good, but the largest nodules in your lungs have gotten larger and there are more.”
“Oh. How big is bigger.”
“Well the largest one went from six millimeters to one centimeter, and the second largest one went from four millimeters to six millimeters.”
“It’s really not a big increase, but there are more of them. As you know, the smaller ones are just too numerous to count, but they’re tiny.”
There isn’t much to be said in response to something like this. The reality is that there are colon cancer cells in my lungs. I knew they were there. They are hard to manage.
“What about the CEA?”
“Your CEA did increase back to your September levels. It’s at 16. It was at 7.3 in the beginning of December.”
“Well at least it’s not at 600 like it was in 2019.”
“Yes. It’s manageable, but we are going to have to go back to a tougher regiment. How’s the neuropathy from the Oxalliplatin.”
“The bottoms of my feet still tingle, but it’s not that bad. Very faint.”
“Very faint? Okay. Well. You do get about a maximum of twelve of those treatments that you should be able to handle, but we want to save it for later if you are still feeling the tingling.”
“It’s pretty faint.”
“The problem is that while it feels faint, as soon as the treatment starts, it will wipe out whatever healing has already taken place with your nerve endings. Then you’ll be right back where you started. So Dr. Kee and I talked about this. You are going back on the Irinotecan.”
“Well. That’s exciting.”
“Well that’s one way to put it.”
“It is what it is. It makes me sick, but I’m not dead.”
“Do you have any questions?”
“Yes. I got an email from MD Anderson addressing the vaccine and when it might be available for patients.”
“What did it say?”
“Oh. Haha… I don’t remember. Let me look it up… Okay. It says to talk to your treatment team about it. Haha…”
“Okay. Well it is not recommended that you would be getting the vaccine. The reason is that it has not been tested on people that are immunocompromised the way that you are.”
“Okay. So what does that mean.”
“Well. You are on chemo. The chemo attacks your immune system by damaging your bone marrow. So even if you developed the antibodies, we don’t know whether those antibodies would survive your next chemo treatment.”
“Oh. What about the people around me. Can they get the vaccine when it is available for them.”
“Yes. Of course. And it will protect you if the people around you get the vaccine.”
“Well that kind of sucks. I guess my son can get it as soon as possible and head back to school, but my daughter is too young to get it.”
“Yeah. How old is she?”
“Yeah. It’s hard, but that’s what is going on right now.”
“What about me with the virus? I mean. My numbers are pretty great with the bloodwork. The chemo doesn’t hit me as hard. My immune system looks like it would be okay. I mean, if I got the virus, wouldn’t it probably not hit me as hard as it hit other people on chemo?”
“Actually what we’ve seen is that even with your numbers as high as they are, your immune system is more damaged than it appears. Even with you looking as good as you do, people on chemo are really getting hit hard by the virus.”
“Yeah. I mean you could even go get the vaccine. It probably won’t hurt you, but there is no evidence that says it will help you at all. In fact, it could be just wasting a vaccine…”
“That could be used to immunize the people around me to protect me that way.”
I spent the rest of the day trading stocks. That’s been my new experiment. I can’t imagine going to work on Irinotecan. I can barely make it to the bathroom as it is. I am also imagining deadlines and meetings and commutes and all of the other things that go with it. So I took what little I had in my trading account and started reading everything I can. I have gotten pretty good at it, but I’m still learning. I make money. I lose it. At this point, it might as well be a pie in the sky dream like publishing a bestselling memoir on my experience with cancer or the novel that I am nearly finished with. At least all of these things give my brain something to do.
The news isn’t good, but it isn’t necessarily bad. I have lung nodules made of colon cancer cells. They are notoriously hard to get rid of once they are in the lungs. I have stage four colon cancer. It spreads all over the place. It creates space that wasn’t there between myself and the world and the universe of people that I care about.
“I don’t know what the fuck I’m going to do,” I was walking and ranting with Yolanda in Buffalo Bayou that night. “There is no end.”
“The end is coming. We just have to be patient.”
“No. It’s not coming for me. The kids have been home for a year. Nothing is working out. ‘Wait for the vaccine. It’s going to be okay.’ I can’t get the fucking vaccine. I don’t know what I’m supposed to do.”
“Just stay home and wait.”
“The kids have been home for a year. What the fuck am I supposed to tell them. Iggy is in his senior year. He is going to have to go back at some point. Lucy is getting depressed. I don’t know what the fuck to do.”
“No. They don’t have to go back. Just be patient. I lived through the Iranian Revolution. I was a kid. We didn’t go anywhere for a year. Kids are resilient. They will get over it.”
“I don’t think you understand. I’m not looking for answers. I know what the answers are. It just keeps turning into more. I went into that visit with ten things that could have gone okay. Not one of them was a good answer. How are the CT Scans? The lung nodules are bigger and there are more. How is the CEA? It’s higher. Okay well at least I am doing better on this chemo. No you’re going to have to go back on Irinotecan. Okay. When can I get the vaccine? Never. What about the people around me? It’s good that they get it, but you still have to be careful because this virus will kill you. So I’m still left in the same boat. I can’t go anywhere. The kids can’t go anywhere. We’re all fucked. Everything is fucked.”
“I understand, but we just have to focus on now. That’s all we’ve got.”
Yep. That’s all we’ve got. Now. I was more settled with this concept when I was closer to death back in the staggering days of early treatment when every experience was life and death. I forget about chemo between treatments. Each evaluation of my current state is a shock.
Later that same night, Yolanda said, “Oh yeah. I bought you lunch last year after your birthday at that Thai place.”
“Yeah. I guess you did. How weird. That was right after my liver surgery.”
“No way. When was the liver surgery?”
“What? January sixth? There’s no way. Is that true? Did I make you go out to lunch a couple weeks after you had surgery on your liver?”
“Yes. But I was already at work.” I looked up the blog entry for my liver surgery. “Oh wow. Look at this. I walked home from work seven days after I had liver surgery. Four miles.”
I read my description of the events at the appointment with Dr. Tzeng on January 15th. He and the resident laughed at me when I told them I was walking eight miles a day. I am glad I wrote it down. It sounds absurd to me now. The singularity of colon cancer blew up my life. There was nothing but preparing and working out and chemo. It’s been eighteen months since I had half my colon removed. My thoughts have expanded into what my future looks like, but I feel no closer to it than I did before. There was something simpler about that kind of life. All I did was what was required for me to live another day, and that’s really all I can do today.
When Lucy was born, there was a lot of drama. She was premature, so there was a lot going on. Justine was in the hospital for seventeen days, Lucy was born, then she was in the NICU for twenty-four days. I was stretched thin, doing a lot of stuff at the same time.
On one of my many trips to the medical center, I was in the waiting room of one of the professional buildings for St. Luke’s looking over the Rice University campus. I could see the tops of the trees, and the Greenway Plaza and Uptown and part of the Downtown. I remember thinking that there were seven billion people out there in the world. In one hundred years all of them will be dead, and there will probably be seven billion more people to take their place. As important as our lives are to us at any given point, we are all just a blip in cosmic time.
I visited my mother around Christmas with Yolanda. We sat in her garden with masks on, six feet apart. It was good to see her, but I thought of how little time we all have and how much of that time has been eaten up in the last year with distancing and safety protocols. I have to remind myself that it’s still worth doing. I owe it to my kids to be around for as long as I can.
After we left my mother’s house, we had a little bit of a scare as she had been exposed to the coronavirus shortly before seeing me and didn’t find out until after we had left. The next day, I talked to her and she didn’t feel well. I didn’t either, but I could easily have chalked it up to allergies. Neither one of us would have thought anything of these symptoms had we not seen each other the day before.
She said, “With as careful as you have been, as I have been, up to this point, it would just be stupid for anything to happen now.”
“Yeah I know, but you wouldn’t be thinking about this at all if we hadn’t seen each other yesterday. You are worried about me getting it from you, but as careful as I am, I could have been exposed and given it to you. Justine is at work at a restaurant. I see her. I give it to you. It’s a lot to think about and every interaction is a risk and a new anxiety.”
“Yeah. Because after all that work, wouldn’t it be terrible if this interaction was the one that killed you.”
“I don’t know. If you think about it, we’re all almost dead in the cosmic scheme of things. Who cares?”
My mother is used to this kind of gallows humor from me. As much as I care about her and everybody, we’re all going to die. I don’t even entertain the idea that it is a cold way of viewing life. I don’t think any of us have time to be fucking around with that kind of guilt. It doesn’t take anything away from the way I care for the people in my life. That doesn’t mean that I’m going to start hanging out with everyone and not being careful or that I won’t do everything in my power to keep myself alive and beat this cancer, but I’m not going to let my worry get in the way of living no matter the limitations on my liberties. My world is pretty satisfying right now. I spend most of my time in my apartment with Yolanda, Iggy, and Lucy. My life could be much worse than that.
“Okay. So we’re going to make some adjustments to the Friday schedule because of the holidays.” It was sometime before Christmas, and I was talking to Dr. Kee. “If we keep the current schedule, you’ll end up with chemo on Christmas Day or New Year’s Day. I don’t even know if there will be anyone here.”
“Oh yeah. That’s not going to work.”
“So we’ll delay a week and do it on December 21 and January 4. How does that sound?”
“Sounds good to me,” I could barely contain my excitement about having another week between treatments. “So when do we switch back to the Friday treatments because I like that.”
“Well it looks like we could do it on January 15th.”
“Hey. That’s my birthday.”
“Oh we can’t do that either.”
“No that’s okay. I mean. Thirty years ago I’d already be dead.”
Dr. Kee looked at the ceiling then closed his eyes, “What is that? Thirty years ago? That’s 1990.” He opened his eyes and looked at me. “Stage four colon cancer thirty years ago. Yeah. You wouldn’t have made it a year. You’d be dead.”
“Well then happy birthday to me. Thank you. I’ll take the chemo as your birthday gift to me.”
Dr. Kee actually laughed, “Well. Let me tell you. My dad is going through cancer treatments right now. I have been taking him for the treatments. I am taking time off next week to take him. I didn’t realize how tough the treatments are really. I mean I have seen people, but seeing someone you know go through it. You guys go through a lot. That’s a tough treatment.”
“Well. Thank you. It is tough. But we do what we do for a little more life, and for that, I am grateful.”
It takes 250 million years for the sun to complete one orbit around the galaxy. In that time, the dinosaurs lived and died. Humans haven’t yet been around for even one million years. On a galactic timeline, we hardly exist. Hard to imagine all that has happened on Earth in one galactic year. Our individual lifetimes are a blip on that scale. We are all almost dead.
I wrote all of this at the end of January. I don’t know why I didn’t think of it as complete at the time. I have been a little withdrawn as the metrics begin to change: the world slowly opening, vaccines available to chemo patients, the kids going back to school. I have grown to like my time at home. It seems odd to even imagine commuting to work or driving the kids to school or even visiting friends and family. I miss everyone, and I love staying home. I am very close to finishing the first draft of a novel. I am still studying trading. I am almost good at it. I am still scraping by with bills and living expenses. I don’t even want to think about Iggy going to college. Even with scholarships and grants, he’s going to have a pile of student loans. I guess it is still going to have to be one thing at a time.
I had the second dose of the Pfizer vaccine about six weeks ago. I was hospitalized the following day with a fever and dehydration. Since then, the chemo has been rough. It has been hard to keep a good attitude when I have been sick so often. Two weeks ago, I had a really rough time. I puked during almost every waking minute. I am about to start another round. I am waiting in the clinic for nurse to get all of the drugs together. I started another anti-nausea drug last night, Olanzapine. It’s used to treat schizophrenia and bipolar disorder. If it doesn’t work, at least I get my bi-weekly core workout. My abs are really starting to shape up with all this vomiting.
I can count on about five days every two weeks of being completely incapacitated. This doesn’t leave me any time to work doing the things I was doing before. Especially with all of the other interruptions: dehydration, days of recurring diarrhea out of the blue, CT scans that take all day, follow-up visits every four weeks to adjust chemo and examine scans and bloodwork, adjustments to the port. I haven’t worked, outside of the stuff I have mentioned, but I swear I feel like I have a full time job. Each day disappears as quickly as it comes. As soon as I get to the point where I am getting my head above water, the next chemo regimen begins.
It is hard to face these visits with a good attitude with as sick as I get, but I find ways to amuse myself. Often when I am feeling nauseous but unable to vomit, I will sit on the edge of the bed and moan, “Ohhhh….”
It reminds me of a They Might Be Giants Song, “LMNO”. I’ll sit there moaning for a while. Then I will start the song, “LMNO, L, M, N, OOOOOOOO, LMNO.”
If Yolanda is nearby, I’ll get a smile out of her. If I am talking about how much time this takes from me, I also have to acknowledge that Yolanda is in that boat with me weathering this time. I can not imagine navigating this storm without her. The first ten rounds where I had a different friend or family member spend the night with me are nothing compared to this. Not that my friends and family wouldn’t do it, but through the pandemic quarantine, it could no longer just be anyone filling that role. I try to make it amusing, but I know that it is stressful.
I have let a bit of negativity get into my thinking around these treatments, but it doesn’t last long. I just get tired of being sick all the time. It’s hard work.
With those scans in January showing that the nodules in my lungs were getting bigger, I allowed myself to do some research on my own to see how I could aid the process of treating my cancer. I have decided to put aside the research on heartworm medications for dogs. I am not quite that desperate. The dragon tears look like an adventure with a concentrated THC syrup that is about one thousand times more potent than a single joint. I imagine after thirty days of THC doses of that size that the cancer cells would be so high that they wouldn’t care. Even if it didn’t work, it might be good just for the story. Then there is the center in California that offers medical oversight of extended fasting, up to twenty days on water. This can reset your immune system. In the case of cancer, it is possible to starve the tumors. There is good science to show the effectiveness of this method, but it is not in my budget right now.
Then there is a book that my good friend Tracy recommended, Keto for Cancer, written by Miriam Kalamian. (Yolanda was quick to point out that Miriam is a fellow Armenian. You can tell by the end of their last names, -ian. I had no idea.) I have read a lot of diet books because the way my metabolism works is that if I am not doing something to control my weight, I am gaining weight. I have discovered that many diets work if you stick to them. I have also discovered that it is hard to stick with almost any diet because I get bored. I read diet books to get the gist of it, then I do my best for as long as the diet can keep my interest. I have also discovered that most diet books take about thirty minutes to read because you can get everything you need to know about the diet from the first couple of chapters. Most of these diets would be better off being one long blog post with a bunch of follow up posts with day menus and recipes. Keto for Cancer is different.
I bought the book when Tracy recommended it in October of 2019. I didn’t read it because I chose to go vegan to prepare for my liver surgery. It turns out that this was the right decision for preparing for liver surgery. Lowered fat intake and a strict workout regimen made for a very clean liver. Dr. Tzeng mentioned this several times after the surgery.
With the results of my CT Scans in January, I decided to at least read the Keto for Cancer book. It is unlike any diet book I have ever read. Miriam Kalamian got into cancer nutrition when her young son developed a brain tumor. Her interest developed into an obsession, so she went to get her master’s in nutrition. The book is dense with descriptions of cell metabolism and then goes into even more elaborate descriptions of cancer cell metabolism. Apparently, many types of cancer cannot metabolize ketones or oxygen and because they can’t process glucose normally, they derive most of their energy by fermenting glucose in the cytoplasm of the nucleus of the cell. This requires a lot of glucose. There have been no clinical trials of this method, but it has been shown to be effective in mice. Because it is not a pharmaceutical approach, private companies won’t be doing any research on this method. There are two professors leading the way, one at Boston College, the other at the University of South Florida. I looked up some papers that address this approach on the government’s National Institute of Health website, and it looks legit. I found one paper that summarized the results of all studies done on different types of cancer cells. Ketosis was shown to be antitumor specifically in my cancer, adenocarcinoma.
After reading the first couple of chapters, I was convinced it was something worth trying even with the warnings from the book about liver damage. Having had liver damage from cancer and then surgery, I am at higher risk of further damage from a diet with a higher fat content. My oncology team was not too concerned when I brought it up with them.
“The damage won’t show up in your bloodwork for at least a couple months. We’ll just keep an eye on it.”
The oncology team would never recommend such an approach. All of the results are pre-clinical. But they also did nothing to discourage me, unlike the supplements discussion where they brought in a pharmacist to discourage me from some hokie sounding supplements, none of which I was considering trying.
Yolanda has been a perfect partner where this is concerned. We started weighing every ingredient to get the macronutrient proportions perfect by the end of the day. I have not been able to maintain the ketosis through the chemo runs. My stomach needs stabilizing high glucose carbohydrates. I am hoping the new medications that I am on will make ketosis an option, but we will see.
The object isn’t to eliminate glucose but to eliminate the glucose spikes. The author quotes a doctor musing that your body will create glucose out of anything, even two rubber bands. Since tumors use so much glucose that they have to hijack the body’s ability to create blood vessel networks to feed themselves, which is why they have me on Avastin. That drug suppresses the body’s ability to create new blood vessel networks. It’s also why I bled from my ass. A cancer tumor needs a lot of blood to deliver all that glucose. The blood vessel network supporting the cancer in my colon ruptured and I hemorrhaged. Also, the steroid they have me on will raise my glucose levels as well. At some point, the cancer can hijack some processes and feed itself with glucose made from muscle tissues. But for right now, eliminating the glucose spikes can deprive a developing tumor of much needed glucose. It might not kill the tumor, but through a solid keto diet and intermittent fasting, I may be able to assist the chemo regimen that my doctor has me on by making the cells weaker. Hopefully, this will lead to slower growth, stabilization, or even reduction. I am not looking for magic. If I was, I’d be taking the THC Dragon Tears. I am just looking for any advantage that makes the clinical efforts more effective.
So that’s my life: cancer research, personal development, equities trading study, keto diet obsession, walking a couple hours a day when I can, writing at least one thousand words every day, hanging out with the kids as much as I can, and hanging out with Yolanda. The quarantine ending doesn’t look like it’s going to change anything much. I am going to see people as things get safer, but I am not about to jump into everything.
This past weekend, the four of us got a cheap AirBnb at Surfside Beach. I have been dreaming about the beach, the ocean, for months. It just hasn’t worked out even to take a day trip in the car. As the evening progressed on our first night there, it occurred to me that the last time I slept anywhere that was not my apartment or MD Anderson was September 29 of 2019, the last night in our house on Truxillo street. So much has changed since then. It was cold in Surfside while we were there. Despite the water being frigid, me and Lucy went in. It was so cold that my hands hurt during the shower afterward. It was worth it. I have been dreaming of a bathtub full of ice for some time, so this worked out for me.
This week I went for CT Scans again. I had a dismal experience that day with a botched attempt at an IV taken up by a rude nurse that kept dismissing my concerns about accessing my port. I finally told her I wouldn’t allow her to access my port. The technician that shoved the tube up my butt was really nice. It’s the little things.
I was really worried about this scan and the bloodwork. If the tumors in my lungs showed any enlargement, I knew that we were going to be moving on to more invasive procedures: ablation, radiation, massive doses of THC. I was kind of grumpy with everyone between the scan and the consultation with MacKenzie, the Physician’s Assistant.
“So I do have some good news, the bloodwork looks great. Your liver enzymes are normal, your blood levels are fine. It looks like the neutrophils are a little low. If they get much lower, we might have to do some bone marrow stimulation. Your CEA tumor markers came down to 15.3. It isn’t much, but it’s a move in the right direction.”
“Well that’s great. And unexpected.”
“Also, your blood glucose levels are way down. Two months ago they were pretty high, but you brought them down significantly.”
“That’s amazing,” I couldn’t help but be proud of our efforts at home to bring this number down and that the liver enzymes are more normal than before I started keto.
“The scans also look good. Everything is about the same or even smaller. It looks like there are less of the smaller nodules that can’t even be measured because they are too small and too many. The large two legions look like they are either the same or slightly smaller. We can say that they didn’t grow, but we can’t be sure if they got smaller because the measurements are so close to the last measurements.”
“Wow. I am really relieved. I thought for sure we were going to have a lot of bad news out of these scans.”
“Nope. Everything looks good. We just have to continue on this regimen for a while.”
“Wow. Thanks. It is tough to be so sick all the time, but it is good to know that it is effective. I can handle being sick if it is working.”
There is always something new in this life. Room for the unexpected. A year ago, I would have told you that I could never stay home for this long of a period of time, but I have done it. I have found ways of living that are so satisfying that I don’t want to leave my house. I want to see people. I want to get out there, but I just feel the distance growing. When will I find a way to get out and see everyone? How will the experience change? Will it be unexpectedly satisfying? For right now, I miss everyone and I’m in no hurry to see any of you.