“You can do a lot in a lifetimeRush, Marathon
if you don’t burn out too fast”
“Your CEA is a little high. Not too high, but in October and November it was hovering around 5 and 7, then in January it went to around 15 and stayed there, relatively stable, but this last one…”
I interrupted, “I saw it. It’s at 30 now.”
Makenzie nodded, “Yes. It’s not too high, relatively, but it seems to be establishing an uptrend.”
“Yeah. It’s not the 600 that I started with, but it’s moving in the wrong direction.”
“And your CT Scan shows something in your liver. It could be what we’ve been looking at for some time, but it could be disease progression. Your lung nodules are stable but not getting any smaller either.”
“And with the rise in CEA, it’s likely that the liver thing is what’s producing it.”
I started to say something else, but Makenzie interrupted me, “I did have something else I wanted to talk to you about. About a week ago, we received an email from the Clinical Center for Targeted Therapies. They did a search in the database for your tumor’s genetic profile and you came up. They want to put you in a clinical trial.”
I had prepared a whole list of things that I wanted to discuss with Makenzie. I forgot all of them.
“I don’t know if you are interested, but it sounds good. There is another patient in the trial that had your exact mutation in the TP53 gene that saw a 25% reduction in tumor size. It’s still in phase 1 clinical trials, so these are early results. It’s up to you.”
“So what exactly happened? My tumor has been genetically mapped, and it’s in the MD Anderson database, and this team just looked it up because someone else has been having success in this trial with the exact same genetic profile?”
“That about sums it up. I totally understand if you don’t want to try it.”
Some of the original list of questions came back to me, “Well, I saw the bloodwork in MyChart before I came in. We’re in a stalemate with the lung nodules, and now it seems, from the CEA and the CT Scan, that something is growing. I was going to ask if there’s something we can do, like ablate the lung nodules or something like that.”
“That’s not really an option. There’s too many. Even if we could, you wouldn’t end up with much tissue left in your lung.”
“Ah. That isn’t going to work.”
“We do know that the chemotherapy will just stop working at some point as well. Not that we think that will happen right now, but it’s something to think about.”
“I don’t think it’s a question of whether I will do the drug trial or not. My point was that I was going to ask if there was something else we could do, and you’re telling me that someone just called out of the blue with an idea.”
“Yes, and you can end your participation in the trial at any time and come back to chemotherapy. A lot of times, we’ve seen that taking a break and trying a different therapy can work to weaken the cancer cells to the chemotherapy drugs. It’s almost like they forget what the chemotherapy is.”
I can vouch for this concept. It is indeed easy to forget about chemotherapy. There is something in all suffering that wants to be forgotten when it’s gone. It’s just really intense. Irinotecan is a tough drug. It took months of negotiating with antiemetics to stop the vomiting. My chemotherapy, every two weeks, started with four antiemetics. Each nurse would list the drugs like a deranged poet.
“We’re going to start with…”
I would often interrupt because I didn’t like the basic assumption that I didn’t know what was about to happen to me, “…Emend, then Zofran, Ativan, then the steroid, Dexamethasone, then fifteen minutes of Avastin, Atropine to prevent the stomach cramping before the Irinotecan, which will take about ninety minutes. Then you hook me up with the bag of Fluorouracil to take home for forty-eight hours.”
There is something about reciting this that made me feel like I was in control of something. The nurse is just visiting. I am the one that is going home with the bag of chemicals and the standard issue, hazmat cleanup kit, each mouthful of food and water its own puzzle. Will it stay down? Will this be the weekend that I give up and go to the emergency room for dehydration? For months, I puked through the whole weekend as we tried different pills at home: Zofran (8mg pills and 4mg lozenges), Compazine, Atropine, Ativan. I like to play with the generic names as a diversion from my roiling stomach: odansetron is a selective 5-HT3 receptor antagonist, prochloperazine is a piperazine phenothiazine and first-generation antipsychotic, atropine goes by the same name and reduces salivation and bronchial secretions and can be used as an antidote for mushroom poisoning, lorazepam is used to treat anxiety and certain seizure disorders that often has the opposite effect on me. Olonzapine finally gave me some relief, but it came at the expense of coherence. The three doses I took on the first, second, and third nights of the chemotherapy weekends left me slow and quiet from Thursday until Tuesday morning. It’s not that I think the nurses don’t care. The nurses are wonderful, but they are at work. I’m not reading a script for a chemotherapy regimen. This is my life.
“What are the side effects?”
Makenzie shook her head, “This isn’t a question for me. You’ll have to ask the treatment team.”
“Do you want me to put them in touch with you?”
“Great. You don’t have to participate. Just talk to them. We’ll follow along in your chart. Dr. Kee and our team are still your treatment team. If you have any questions for us, just send us a message. You can stop the study at any time and go back to chemotherapy.”
I have struggled with this blog entry for weeks. Do I name the doctors or the drug? How do I talk about the struggle between hope and despair? How do I talk about the mixed emotions that come with two months of no chemotherapy?
A lot has been happening in my life in the last few months. I finished the first draft of a novel, a difficult accomplishment given the chemotherapy regimen. I have a lot more to do before the story is complete, but the bones are there. About the same time, Iggy graduated from high school and Lucy finished elementary school. I was approved for social security disability insurance, which really helped but was no small task. It was difficult to admit that I was no longer capable of working and that my family needed me to stay home.
The biggest change was the end of chemotherapy. I had no idea how regimented my life had become. I was sick for six out of every fourteen days, that’s nearly half of my life. The next round of chemicals always on my mind, those precious eight days of feeling relatively well were focused and productive. The one thing I didn’t anticipate was how much time I would have to worry and anticipate.
In the dream, I am walking into a house with Yolanda, Iggy, and Lucy. It is not a house that I am familiar with but I know that it is my house and that we live there. The door opens on a hallway that runs between a sparsely furnished dining room to the left and a kitchen with black marble countertops to the right. We stopped in the dining room, but Lucy continued on down the hallway to the living room and took a right toward the bedrooms in the back of the house. She returned quickly, the color drained from her face, “There is someone in the house.”
Lucy pointed down the hallway, “Down there by my bedroom.”
I walked off toward the living room, but a man turned the corner heading toward me. He was a few inches taller than me but also incredibly obese, clothes a couple sizes too small with his belly hanging out over his pants, black curly hair.
I stood in his path, “You have to get out of here, right now.”
He didn’t acknowledge that I had spoken, didn’t seem to be aware of my presence. His eyes were just completely blank. I tried to push him toward the door, but I didn’t even change the direction he was walking. I tried to push him hard with no effect. I punched him in the head, still nothing. I was starting to panic, and the world started to fade as I woke up. I can’t tell whether I was awake for the next part or still in the dream, but I made a decision to kill him. A short knife appeared in my hand, and I stabbed him. This also did nothing, no blood. Nothing. Then I was awake.
I thought about this dream for a long time. The man seemed to be a metaphor for cancer, blindly ravaging my body (the house) with no regard to the damage he was doing. I was aware that I was reading details into the dream, there being no damage to the house that I could see, but his obesity suggested a ravenous appetite much like a tumor, which often hijacks the body’s glucose system to obtain fuel for its unchecked growth. I didn’t like my first attempt to remove him from the house. I thought that I should have been ready to fight more readily and criticized myself for negotiating with him too much. At the same time, I was aware that it was unrealistic. I stabbed him within fifteen seconds of meeting him. How more ready to fight should I be? When the solution doesn’t work, there is always second-guessing, like the Monday morning sports analysts after a football game in the losing city. This whole line of thinking made me more aware of my thinking around cancer, the default modes that are always there.
What if the drug doesn’t work? Don’t think like that. You need a positive attitude, that’s what everyone says, there are (uncited) studies about how positivity helps you beat the disease. But what if the drug doesn’t work? What if the chemo doesn’t work? What will Lucy do? I have to plan for the worst. No! Stay away from the negative thinking. You aren’t going to die. You have to believe that. But I am going to die. Eventually, I am going to die, just like everyone else. Why can’t I think about it? You aren’t going to die. You can’t think like this. How exactly does one keep from thinking about a thing? Especially when that thing is one of the outcomes of cancer, which I happen to have.
Between the spiraling despair and the desperate hope for miracles, real life takes place. Lucy and I are moving to Yolanda’s house in the Heights at the end of the summer. Justine is moving to Austin to take care of her parents. I will drive Lucy up there on weekends as much as I can, but it makes me think about the upheaval in Lucy’s life if I don’t make it, living with me and Yolanda in the Heights, then does she move to Austin or does Justine move back? I can’t think about that for too long. It tears me apart.
Iggy is going to Loyola in New Orleans in one month. While Yolanda is in Philadelphia seeing her youngest off to his first year of college, Justine, Iggy, Lucy, and I will stay together in an AirBNB for a few days in New Orleans. This is a big milestone for all of us. Justine and I can stay in a house together for a couple days to see him off. I don’t even know how to write about this stuff. Lucy and Iggy are close. They express this in public with a little comedy insult show.
“I hate that show,” Lucy says with a face.
“That’s because your dumb. I’m so much smarter than you.”
“That’s because I’m better than you.”
We’ll have a room for him to stay when he comes back, but it’s all new. Everything is new and keeps changing. For the last four years, every few months, I feel like the stage crew comes running into my life and changes the set. Change is a constant, I understand that, but I always felt like I could provide at least a little continuity. I know Iggy and Lucy are closer than their banter. Where does everyone go if I am not there? What happens to the violin lessons and practice and tuition? How exactly do you recover from your parent dying when you are twelve, eighteen, fifty? Will they be able to continue with their current goals? How exactly do you prepare kids for your death?
But you’re not going to die.
It’s exhausting, and when I hear stuff like: “Eventually the chemo will stop working.” There’s no way to not think about death. Will this new drug work the way it worked for the other guy with colon cancer? I have no idea, but I don’t think there are many other options with as much promise, and with the level promise currently available in my prognosis, that’s not much.
The TP53 gene is responsible for producing a protein that suppresses tumor growth. Unfortunately, it is the most common gene mutation in cancer.
“It is the police officer of cell behavior.”
Dr. Dumbrava was described as wonderful and brilliant by her staff as I met each of them on my first visit to the Clinical Center for Targeted Therapies at MD Anderson. They weren’t wrong. There is some quiet determination about her that makes me believe in her mission. I don’t know that I expected a cold and distant researcher, but I certainly did not expect her to be so warm and caring. She has a way of explaining complicated concepts in simple terms that I can appreciate.
“There are two main mutations in the TP53 gene. One that covers over 99% of these mutations.”
She drew a circle on the whiteboard and explained that the trial drug finds no way to enter this variant as the molecule just bounces off of the round shape.
“But in about 1% of TP53 mutations, it mutates on the y200c sequence and the shape is more like that of a bean with a little indentation where the molecule from the trial drug fits perfectly.”
“That is the mutation that I have?”
“Yes. Of the other eight people in the study, we’ve seen mixed results. I don’t know the details of all of them because there are other hospitals that apply for the slots available in the study, but in one case, there is a patient with advanced colorectal cancer with your exact TP53 mutation on the y200c sequence that has responded very well. His tumors have shrunk by almost 30%.”
“How does it work? Does it correct the gene mutation?”
“No. It’s more like stabilizing the mutation, effectively fixing a switch that is broken in the off position.”
I thought for a while and then asked, “So, how do you feel about this?”
I didn’t expect her to be so reflective with her answer, “Me. Personally, I have been doing this a long time. You work very hard for such little progress. I can’t say that it will work, but it is exciting. I am hopeful.”
“What are the side effects?” I had asked this question of everyone I had met. I knew that Dr. Dumbrava would give me the same answer, but I wanted to hear her say it.
“There is one side effect. The bilirubin blood test has been high, something about the way the drug interferes with the test, but when we send it over to the Texas Children’s lab, it shows that it is normal.”
“I have heard everyone say this, but it sounds so unreal to me. No nausea, no diarrhea?”
“No. Not yet. There haven’t been that many people that have taken it, so you may display some side effects that we haven’t seen yet.”
“I can guarantee that you wouldn’t find eight people on the planet that wouldn’t get very sick on Irinotecan.”
Dr. Dumbrava smiled, “That’s probably true.”
I have a scene in my head of a beach, not a Texas beach with the outrageous heat and the mud. Just a beach with clear water, not anywhere in particular. I don’t want to do anything there. I just want to be able to go there and stay for a good long while. I am not a fan of the heat, so I don’t want a tropical beach. It doesn’t have to be sunny. I could surf from time to time, or fish. I could watch the sky for birds, stars, clouds, airplanes, satellites, the International Space Station, aliens…
There are so many things to worry about right now: kids, goals, moving, money, dentists, doctors, life and death. This beach is where I go when I think of what I would do if and when those worries are solved, or at least mitigated for some finite period of time. In my miraculous future, I don’t have the immediate threat of disease progression. I will live stream from this beach as I write with my toes in the sand. I won’t be on a restrictive diet. I’ll swim and walk for hours each day.
I wake up every morning at 8am and take four pills. I don’t know if they are working. On chemotherapy, I had no time to think about whether it was working or not, everything was preparation for the next round of chemotherapy.
Twenty years ago, a paper was written by people I don’t know about the TP53 mutation. What was I doing twenty years ago? What were you doing twenty years ago? What kind of research is being done right now that may be used to treat you for a malady you don’t even have yet? That paper was read by some medical researchers who did some experiments on cells in a petri dish. Then they took their idea to a group of people that gave them some capital and they elected a board of respected leaders to govern the direction of their research. They developed some molecules that might affect this particular gene mutation. They gave cancer to some small mammals and tried to treat it with these molecules. They iterated through ideas until something worked. They repeated the results many times. They presented results to the FDA which sent them back for more data. They collected that data and presented to the FDA again. The FDA approved a certain number of slots for a phase one clinical trial.
Phase one clinical trials are all about toxicity. How much of the drug can a human tolerate? They know how much a mouse or a rat or a monkey can take, but they have no idea if that will translate pound for pound to a human being. In phase one there are no placebos for blind control groups like there are in phase two or three. I am taking the drug. It has no side effects. I could measure what a drug was doing in chemotherapy by how sick I was. I feel nothing which has caused a whole lot of anxiety. They were able to start me at a higher dose because they know the lower doses didn’t kill the other eight people. I am a drug experiment. I have been practicing my whole life for this. It’s a chance to be a part of history, if only to be the shoulders upon which later cancer patients stand.
Every Friday, I go to MD Anderson for them to check my blood and take EKG’s. Apparently, the FDA wants EKG’s in phase one, and they get a lot of them. My heart is in great shape. The first couple of Fridays are grueling twelve hour days. They take blood and an EKG, then give me the pills and take more blood and EKG’s every hour on the hour all day. I am down to one blood draw and an EKG now.
At just over two weeks into the study, I was in the MD Anderson emergency room with an anxiety attack. I texted Dr. Dumbrava on the way. She called me back two minutes later. She called the ER doctors to brief them on my condition. Bloodwork, IV fluids, nothing wrong, they sent me home with Yolanda at 4am. Dr. Dumbrava texted me the next morning to see if I was all right.
“I just needed to make sure that what I was feeling was not connected to the drug, and it wasn’t. Next time, I’ll just take an Ativan.”
“Go into the ER if you have to.”
Sometimes that’s all the anxiety wants, the encouragement to get what I need. A couple weeks later, I was back in her office for the weekly blood draw. I explained some of the anxiety to her.
“I know it’s all in my head. We really won’t know anything until the CT Scan on July 29th.”
“I really think you’re doing far better with all of this than you give yourself credit for.”
Perhaps that’s true. I have no way of knowing. I have always done things the way that I do them. Though some of the bloodwork had not been returned, Dr. Dumbrava said that it was okay to continue on the drug. Later in the hallway, leaving yet another appointment, I ran into her again. She looked worried.
“Your CEA came back. It’s 59.7.”
I can’t say that I wasn’t disappointed, but I also know there are caveats, “Okay. Well, that’s not all bad. If my liver enzymes were up at the same time, I would be worried.”
She said, “I’m not worried. We see this a lot of the time. The CEA continues on an upward trend even as the tumors are shrinking.”
“Oh yeah. Like when the chemo first started working or when they removed the liver tumor.”
“Yes. Please try not to worry.”
I really appreciate her care. She is concerned about my physical as well as mental health. That whole team is really great.
But what if there is reason to worry? How can I not? Putting all of this into words has been difficult. I have been thinking about this blog entry for weeks. I still don’t know that I’ve said a quarter of what I wanted to say, but I wanted to get something out before the CT Scan on July 29th. Part of me wanted to just wait and tell the whole story after the scan, but I realized that part of the journey here in this blog is being as honest as I can be. There is no way to avoid the flood of thoughts and emotions that are the anticipation of that scan. It might not be as conclusive as my worried anticipation makes it out to be, but I need to record it if for no other reason than the record I am leaving my kids. It doesn’t matter if I am alive or dead at the time that they become interested enough to read this account, I want the full story to be here.
I forget what she was anticipating, but Yolanda was talking about something that Lucy and I would be doing in the coming months or years as we were driving away from getting coffee at Antidote.
I interrupted her, “I have to say that every time you start talking like this, I have a refrain in my head that adds ‘if I am still alive’ to everything you say. It’s in my head all the time right now. I can’t stop it. I am open to the miracle of beating this thing, even to the idea of living with it in check for decades, but right now, I just can’t stop that tape.”
Yolanda listened, then waited to digest the information before saying, “I have the same thing happening to me. I wonder what I’ll do if the worst happens, but I can’t bring it up like you can. It’s not my place to do it.”
“Oh. You’re right. I didn’t even think about that. If I bring it up, I’m just expressing myself, but you can’t really do that without it sounding negative.”
Yes. I’m hoping. Even with all this negativity battling inside me, I have hope.
A few nights ago, I was talking to my mother. I said, “I have something I have been wanting to ask you. You always have something to say about a doctor’s visit or a current malady. I was wondering how you deal with that, each thing has got to be a reminder of end of life. I hate to even bring that up, and you can tell me to stop. But I have to ask you: Do you get into your own darkness about end of life and the loneliness that comes with it? I mean, I know that I do, as much as I love companionship, and I am so glad to have a partner, believe me, Yolanda is so great to have by my side. It has dramatically improved my life, but late at night, and you know I am often up when no one else is awake, I stumble into that darkness and it’s lonely. We all face death alone. I just wondered if that happens to you. Do you get caught up in your own internal conflicts about end of life? How do you deal with it?”
“It’s totally okay for you to ask me anytime. You know how I feel about death, and I feel totally callous sometimes because I feel that life goes on for others after we’re gone. We have to move on. I have always been a big believer of that. I am aware that I am nearing the end of life years and all that. I have my moments, but I have to say Larry, I am not dealing with what you’re dealing with. You still have kids that depend on you. I would be petrified. Even when I was in my fifties and I had that hip replacement that got infected…”
“Oh yeah. We were all too busy with work in our late twenties to come see you regularly, but that says it all right there. We were taking care of ourselves.”
“Yes. I have no way of relating to that experience. Those kids…”
“I know. I am still most of their day. Lucy in particular keeps me up late at night. I am most of her day. But I shouldn’t leave out Iggy either.”
“Because he isn’t going to tell you what’s wrong.”
Yolanda told me the same thing at the end of our conversation when I reminded her that her breast cancer could come back at any time, “But it isn’t the same. I don’t have a twelve year old. My kids are all in college, their tuition is paid for. They’ll be fine.”
It’s a circle that I can’t get out of. I could die, but I can’t die because my kids need me. I want to be there for them. But I guess I have to go back to those first couple weeks in St. Joseph’s hospital when I despaired for the same reasons. I remember thinking that my worry left no room for what wonderful people they are. They can handle the world. They will be all right. I will do everything possible to keep myself alive and in this fight, but it is going to be all right because it has to be. Iggy and Lucy will be fine either way.
In my stock market trading studies over the last year, I was having a conversation with Yolanda about some particular stock, when she said, “Well, the price will either go up, go down, or stay the same.”
It took only a moment for me to find the humor in this, and now we use it as a running joke. When speculating about how a meal might turn out, “It might taste good, bad, or just okay.”
The CT Scan is on July 29th. It might mean nothing. It might change everything for better or worse. The tumors could get larger, smaller, or stay the same.
18 responses to “uncertainty and the long hello”
Enjoyed reading this. Well done.
Thank you, Kelli.
You are quite a wordsmith, sir. I look forward to the novel.
Thank you for sharing. <3
Thank you. Eric. On to the second draft of the novel.
Definitely think you should keep your pod participants informed so that we can support you according to individual MO’s….am also jumping on that novel publication bandwagon….HOPE….
Hope… Thank you.
I want to get my spot in line for an autographed copy of your novel.
I save a spot in line.
I’m so happy I got this today – we were wondering how everything was going – I’m hopeful you are going to receive your miracle……You’re ‘Larry F’n Lines’ …….remember that –Jersey strong <3
Thank you Sherry.
I am praying for you always and I hope you can feel the positive vibes all the way from RI. As one if your reader/friends above…I too wish for a signed copy of this amazing novel. Your blog leaves nothing to the imagination. Let the boogie man out at the beach…maybe during Shark week.
Thank you Abbie. Always good to hear from you.
It’s a lot to write about and You do it so well. We’re there with you .
Thank you. Love you both.
thank you for sharing this Larry. I just love the way you write. I’m praying for you on the 29th.
Thank you Mike. This means a lot to me.
I’m not able to relate to most of what you say on a first hand basis. But you inspire me. You inspire me to make the most of the time I have. To appreciate my health though it’s far from perfect. To work harder to be healthier. To be the best version of me.
I’m not sure I’d be as strong as you are if faced with the same fate. But I’m glad I’ve been able to follow the words you share so freely and so honestly. Thank you.
Thank you, Shawn. I am happy that I inspire you. That is a huge compliment. I don’t feel that strong, and I’m sure you would do better than you think you would in a similar situation, maybe you are strong in things you are dealing/dealt with already and you just don’t feel it. Who knows.