One year ago in July, I was in New Jersey visiting family and friends, some of which I hadn’t seen in thirty years. In June of last year, I visited friends, a high school reunion of sorts, that I had also not seen in thirty years. For a long time, I had imagined these family and friends as within reach and easy to see whenever I wanted. What a difference a year makes…
I am really glad that I made that effort last summer, because I don’t know when that will happen again. My quarantine began last August when I went into St. Joseph’s with the bleeding emergency. I didn’t think of it like a quarantine at the time. My world just got a lot smaller.
Coming out of the chemotherapy in May, I thought that I would wait until my bone marrow and my immune system recovered, then I would be able to get around and see people. This has not been the case. I have been sequestered in my apartment, along with the rest of the world, watching the coronavirus continue to consume the world.
When I first landed my contract at BHP last October, the workload and project schedule left the impression that I would be employed through at least 2021, but the energy sector crash that accompanied the economic disaster eliminated the workload. My contract ended on June 30th along with everyone else that worked on anything related to that schedule. I have been sending out resumes and interviewing since then, but the process is slow and employers seem noncommittal. This story isn’t unique.
In a very broad sense, the whole world seems to be changing. The word that occurs to me around this is ‘seismic’. ‘Incremental’ has been replaced by ‘sweeping’. The ground moves beneath our feet, and there doesn’t seem to be a thing anyone can do about it. I am not about to write a persuasive piece about the state of the world and what I think should be done about it, or whose fault it is. Don’t get me wrong, I have some very strong opinions on the subject. I’m just not going to do that. I’ll be sure to indicate that I am going to write about politics in the title if I ever do that. But this piece is about cancer. My world started shifting last summer, and I can’t make it stop. One thing has piled on top of another until I am here, the summer of 2020, just before the one year anniversary of my cancer diagnosis, and the world seems unrecognizable.
There was a book written in 1970 called Future Shock. I read it a long time ago and I have retained very little of it, but I think about the basic premise often. The general gist of the book can be summed up in this quote from Wikipedia: “The shortest definition for the term in the book is a personal perception of ‘too much change in too short a period of time‘.”
Too much change in too short a period of time? That describes this entire year for everyone. In the past, I have thought of this concept, and the book, in relation to things like the internet or smart phones or 9/11. I’m sure I could come up with many more examples, but none of them come close to the changes we have all been expected to digest in the last six months. Of course, I appreciate that my perspective comes from a place of privilege. I was not a lifetime resident of Afghanistan in 2001 or Iraq in 2003. I am not a Syrian refugee, and even the problems of Syrian refugees have been compounded exponentially with the coronavirus situation. I have tried to imagine what it must be like to be a refugee and also dealing with a health crisis, but it is beyond my experience.
My apartment is very nice. I have resources to weather the storm, and family and friends to help me when I need them. I am a patient at the most successful cancer hospital in the world which happens to be located in the largest medical center in the world. The year is 2020 and stage 4 colon cancer is not an immediate death sentence. I benefit from the decades of cancer research and the experiments and trials of all of the people that come before me. In the two months between the end of my initial chemotherapy treatments and the scans and tests to determine the status of my cancer, I stayed at home and wrote and worked when I could, spent time with my kids, ordered groceries online, and walked for two hours every day in Buffalo Bayou.
But I am not unrealistic. I toyed with the idea of going from Stage 4 cancer to complete remission on my first run through treatments, but I knew that the odds of that occurring were very low. Dr. Tzeng even told me as much the last time I saw him. I was talking to him about the book I had written about my experience with cancer, and he said, “It would be nice to see a book about people living with cancer, because that’s most people with cancer. The cases where we treat the cancer and it just goes away are very rare. We usually treat it, and then we treat it again.”
Going to MD Anderson is a traumatizing experience. I wouldn’t have thought of this, but I took my friend Yolanda to one of her follow up visits for her breast cancer. She has taken me to many of my chemotherapy visits over the last six months. I knew she had follow ups coming. It totally made sense to me that I would take her, but she made a lot of noise about not needing anyone to help her.
Going anywhere in this pandemic is a project, but going to MD Anderson is always a project. With the pandemic, MD Anderson is just crazy. Sometimes it’s empty, sometimes it’s packed, but there are only a few ways to get in because of the new screening protocols, and none of them seem to be near parking.
I insisted on driving Yolanda to and from her appointment. When I picked her up, I recognized the relief, and they hadn’t even done anything invasive. It was just a consultation. MD Anderson is amazing. The people that work there are some of most professional and caring people I have seen in any medical facility, but they do things to you in there. You could walk in feeling fine, and you walk out feeling sick. It is always a relief to leave. I saw that with Yolanda. She wanted food, and coffee, and chocolate, and she was agitated. I recognized myself in her condition.
So when I went for my follow up bloodwork, I was more acutely aware of my state of mind. I had previously recognized my Pavlovian response when driving to the chemotherapy appointments. I would get nauseous as I got closer to the facility, but I hadn’t noticed how angry I would get. As we drove up to the drop off, I wanted to yell at people in traffic and the security personnel around the entrance. I wanted to instruct the screening people at the just inside. I saw the inefficiency in everything.
In the car, I put on my mask, took a deep breath and went in. There are two hand sanitizer stations on the outside of the sliding doors, so I used one of the stations to sanitize my hands. I went through the doors, and everything was chaos.
Before the second set of sliding doors, there was a security guard who yelled at me while pointing at the next two hand sanitizer stations, “Sir! Please sanitize your hands.”
“I just used did that outside.”
“Okay. You already sanitized your hands. Go inside to that lady right there.”
I stepped through the next set of doors to that ‘lady right there’. She was directing someone to do something. She turned around with a pile of masks in her hand and seemed surprised to see me, “Hello, sir.”
We stood looking at each other for a while, “Do you want me to change my mask for one of yours?”
“Yes sir. Could you sanitize your hands first?”
“I just did that outside.”
“You just sanitized your hands outside,” she said it just like the security guard, as if I didn’t know that I had just sanitized my hands outside. She held a mask out to me, “Please replace your mask with one of ours.”
I took the mask from her and replaced my own. She looked at the body temperature detector lights behind her, “Okay. Your body temperature is fine. Please step in line along the marks that you see on the floor maintaining a safe distance from the person in front of you.”
She walked away from and I followed her along the trail of red markers on the floor carefully spaced six feet apart. I stopped when I noticed that the marker I should stop at happened to be right next to the table where she was rummaging through piles of more masks and paperwork. I just stopped at the marker six feet from her.
She turned around and seemed to be surprised to see me again, “You can move up to the next marker sir.”
“That marker is right next to you, so I decided to give you some space.”
“That marker was right next to me sir. Here let me get out of your way.”
She got out of the way, and I moved into the slow moving line to get into the hospital. When I arrived at the screening window, I couldn’t understand why the line had moved so slowly. There were only five questions.
“What is your medical record number?”
“blah blah blah blah,” the medical record number. Will I ever really forget my medical record number at MD Anderson?
“Have you been out of the country in the last 30 days?”
“Have you been in contact with anyone in the last 14 days that has tested positive for COVID19?”
“Have you experienced any symptoms like fever, chills, cough, or shortness of breath?”
“Have you been tested for COVID19 in the last 20 days?”
I went on to get my bloodwork and my CT Scan. That was Sunday, July 26. My consultation with Dr. Kee wasn’t until Friday, July 31, five days later. On Wednesday, July 29, the bloodwork results were posted to the MyChart application on my phone. I went straight to the CEA numbers. My CEA was 23.5.
For reference, my CEA was 423 in September of 2019 and 581 two weeks later when I started chemotherapy. In May, my CEA was at 7.2. A normal adult that smokes has a CEA of less than 5. CEA is a protein that is present in the blood when there are colon cancer cells in the body or when a person is pregnant. I was pretty sure I wasn’t pregnant. 23.5 is nothing compared to 581, but I prepared myself for the news that I would be back on chemotherapy very soon.
Dr. Kee didn’t disappoint me. We had a Zoom meeting. His camera wasn’t working, but I imagined him closing his eyes whenever he spoke. He was able to share his screen, so he went over the CT Scan with me. The nodules in my lungs hadn’t gotten any bigger, but they hadn’t gotten any smaller.
“Because they are still there, and we don’t know what they are, we are just going to assume they are cancer.”
My father had an ex-ray 35 years ago that showed ‘spots’ on his lungs. I made a mental note to check in with him about these ‘spots’ and if anything had come of them. I have made this mental note several time, but I never end up doing it. I haven’t actually spoken to him in 27 years. We have exchanged texts. I even texted him that I had cancer. In response to the texts, he promised to call.
“Wow. That’s terrible. I am busy at the moment. Can I call you on Saturday?”
“Absolutely. I’ll be here.”
Saturday comes no matter what the subject and we don’t end up talking. He calls my brother if it’s really important.
“Larry has cancer?”
Question. Question. Question. Question. John answers as many of these questions as he can, then sums it up at the end.
“Why don’t you call Larry?”
Dr. Kee went on to the liver, “You see right here? There is a small spot at the margin.”
“Oh yeah. I can see that.”
“And with the CEA going from… What was it? 7.2 in May? To 23.5?”
“I’m going to recommend that we go back to the chemo for three months. Another six treatments.”
“Yeah I expected that when I saw the CEA.”
“How is the neuropathy? Any tingling, pins and needles, in your hands or feet?”
The Oxalliplatin causes neuropathy by dissolving the sheaths around the nerve endings. Most, or all, of that will heal over time, but it is annoying, and during the treatments, it makes consuming cold foods or drinks especially interesting. It’s like eating really strong pop rocks.
“The bottoms of my feet are still bothering me quite a bit. Just the heat and the cold make them tingle quite a bit.”
“Okay. Well I am going to cut out the Oxalliplatin this time. Instead of Folfox, we will do the Folfiri. That just switches out the Oxalliplatin for Irutucan. You won’t get the tingling or neuropathy, but it causes diarrhea in a lot of people.”
“So I’m switching out the neuropathy for the diarrhea?”
“Yeah so I will prescribe a couple of medications to deal with that.”
“Do you have any questions for me?”
“Yes. What is the prognosis around this? What do you think will happen with this spot? And the cancer?”
“Well. I think we should expect that you will be on some form of chemotherapy…”Dr. Kee struggled for words that were not “for the rest of your life” and came up with, “…from here on out.”
“I understand that.”
“Yeah. You had a pretty radical case of colon cancer. When it spreads like this, colon cancer is especially hard to eradicate completely,” he paused. I could see him closing his eyes. “But we can contain it. When there is a spot and the evidence is there that it has taken hold.”
“Back to chemotherapy?”
“Yes. It’s back to an intense chemotherapy like this. But there might also be smaller doses in between. We have to trade off toxicity with containment. Intense regimen. Recovery. Check it. Repeat.”
“Okay. Yes I understand that.”
The Zoom meeting with Dr. Kee ended. I exchanged some texts with my ex sister-in-law, Barbara, the pathologist.
“What was the number in October?”
“What is it now?”
“That’s a big difference.”
“Yes. It’s about containment.”
“Just try not to be anxious about it. I know. Easier said than done.”
“Yes. Easier said than done, but I am doing okay with it.”
I came away from this news with some disappointment, but it was really for my social life. It has been over a year since I’ve been able to visit with anyone normally, to go to a grocery store, to sit in a coffee shop… I resolved that I would check in with people that were being careful and visit with them. I haven’t seen my nephew Matthew and his wife Paige’s new baby, Jack. I’ve seen plenty of pictures. News travels fast in family. They called me to let me know they had heard the news from Barbara.
“Maybe I will come out to see you. I know Lucy wants to see that baby. She’s been to the wedding shower, and the wedding, and the baby shower. She really wants to see that baby,” I was thinking of Lucy through a lot of this. She’s 11 years old and very social.
Matt said, “Sure. I haven’t been in the office in some time. And the only people that come over are also social distancing.”
I talked to Elysa. She no longer lives in the building. She moved to Prairie on a couple acres of land with Nathan and the five kids they have between them that Lucy desperately wants to see, “We haven’t been anywhere in weeks. There’s a whole separate apartment that you can stay in. We can just see each other outside.”
“That sounds great. I will come out for a day or two next week.”
Of course, I haven’t seen my mother in months, so I made plans for us to drive out to see her. The next time I dropped off Lucy with Justine, I talked to her about my plans.
“Larry. I’m not going to tell you can’t see everyone, but I think it’s a bad idea. My roommate tested positive, and I didn’t test positive or have symptoms of any kind. I missed two weeks of work without pay, and I didn’t see the kids for three weeks. It’s the worst it has ever been here in Houston. I know the feeling. It can make you crazy, and you want to make plans. Like I said, I am not going to tell you not to do it, but it’s not a good idea.”
I took a deep breath knowing she was right, “You are right. It is a bad idea.”
“I’m not telling you that you can’t do it. It’s a trade off and you have been quarantined for some time.”
“Yes I know. And you could tell me not to. We are both raising these kids. It’s not just me.”
“But I’m not going to tell you. Just think about it.”
“No. I’m not going to do it. Thank you for talking me out of it.”
“It’s just a couple more months.”
“I actually don’t think it will only be a couple months. I don’t know how long it will be, but I can’t think like that either. It’s been a year for me.”
“No. It will only be a couple more months.”
Lucy watched this whole conversation with a silently awed expression as she watched her hopes for a social life disappear.
“I was thinking a little about Lucy as well, but we are just going to have to start scheduling things in Zoom meetings with family and friends so that she can see and interact with more people. Iggy is almost thriving in this environment as he doesn’t have to go anywhere.”
Justine said, “Yeah. Just a couple more months. Play games. I recently was invited to an online show and tell by a friend. Anything to have more social time.”
Will it be another couple months? Another year? Two? I have no idea. I can’t count on any timeframe.
When I was in the middle of the darkest of days over the last couple of years, Troy told me a story about some high ranking officer that was captured in Vietnam and was held in the same camp with McCain. He was imprisoned until the end of the war. He was being interviewed for a documentary or something, and the interviewer asked him how he got through that being tortured and starving.
“You make the best of it. You plan for what you have right now. There would be rumors going around the camps that we were going to be liberated soon, and some guys would live by that. But I always noticed that those guys would be the first to die. You have to accept where you are and find reasons to live under the circumstances right now.”
Another thing this reminds me of is a Warren Buffett quote from 2010 or 2011. I cannot find this quote when I search for it, so I don’t know if he actually said it or if I just made it up and attribute it to Warren Buffett.
At the end of a press conference, a reporter asked Warren Buffett, “Mr. Buffett. When do you think the recession will end?”
“When we stop expecting it to end.”
I have found so many places to use those thoughts. Don’t plan on being saved from the POW camp. Stop expecting your misfortune to end. The only way it will end is when I decide it is over. The cavalry isn’t coming to save me. I could be extremely disappointed every time I get this news, or I could just go on living.
When will we be able to see each other again? I don’t know. My immune system is about to go into the dumps again. I have a very tight quarantine circle. I might break that group to take the kids to see my mother, but each time I go out, I risk an infection that could kill me in the coming months. That could put Justine at risk with her Lupus. Or Yolanda who is still compromised from her own cancer treatments. Or Troy, who has already been incredibly sick but tested negative. So I am going nowhere for ‘another couple months’, or years, or…
When Alvin Toffler wrote Future Shock, he didn’t imagine today’s world. Or maybe he did, and that’s why the book was worth writing. I remember him talking about the cycles of change and how they would just get bigger and more rapid as technology progressed more rapidly. In 1970, how long would it have taken for a virus to get from Wuhan to Houston? Would we have even known it was coming? Before this current crisis is ended, what new mayhem will come our way? We have no idea, but I be it will be something.
So when I think about it, those trips last summer were golden. I saw a bunch of people that I might not see again in this lifetime. I’m not saying that like it’s a fact, but it’s a reality we all must face. The ground has shifted beneath our feet, and we don’t know what this new world means. So schedule those Zoom meetings, and those Facetime calls. Don’t assume this is all going to work itself out, and don’t call me with the expectation that I can eventually make plans in person, because I cannot.
I took the news of my chemotheraphy redux to the people that I owed a personal phone call first. The people that I consider within my quarantine circle. Then I have the wider world of family and friends that I care for and who care for me. This is the original reason I started this blog, to inform the people that would want to know. I know I will talk to a lot of you personally as well. I look forward to it.
This Friday, August 7, I will start chemotherapy again. I am not facing this new treatment as a setback. It’s the reality of my life. Soon enough, we will all be dead, but I will do as much living as I can without the despair and without looking to the horizon for the cavalry. I have it pretty damn good. I have a nice apartment, internet, food, musical equipment. I am writing another book (fiction), while editing the first. Life could be way worse than this, and for sure it already has. I lived through that as well.