It’s hard to have a sense of humor about kemo (my daughter’s spelling – I’m going to stick with it). Once it’s happening, there’s no turning back. A path to wellness through more sickness. Maybe…
I have had problems with anxiety for as long I can remember. Racing heartbeats, stage fright, social anxiety, whatever… It’s always there. I have landed in the emergency room more than once. I’ve been through long periods of chronic episodes and single episodes that blindside me. Over time, I’ve gotten better at dealing with it. I’ve developed little tricks for dealing with anxiety.
“If it’s not causing me anxiety, it’s not worth doing.”
“13 second breaths. Slow down the breath.”
“Excitement or anxiety? Who can tell the difference?”
Friday morning, Barbara picked me up for an odyssey of a day at the MD Anderson Cancer Theme Park. Blood work, liver surgeon, nutritionist, lunch, and the spectacular Ambulatory Treatment Center (ATC) for Infusion Therapy. There were the usual SNAFUS. All of the appointments lined up back to back in the morning. Just a little late ourselves. Blood work ran a little late. The liver surgeon was an hour late. The usual.
Blood pressure 125/75.
The highlight in the morning was the liver surgeon. I want a bit of a swagger in a person that is going to be cutting on my liver. He arrived a little later than his assistant who was clearly stalling for his arrival. He came in, interrupted his assistant, and started explaining the printed liver diagram he had in his hand. He had drawn the tumor and some lines to indicate its extraction, but he really came to talk about my physical condition.
“You need to be strong for this surgery. You had surgery on…”
Assistant, “August 26th.”
“August 26th. You’re in pretty good shape now, which means you were in good shape before the surgery. You’re going to need to be in even better shape for this surgery. Your liver needs to be half its size, which means we need to get the fat out of the liver. Changes in diet, exercise… You don’t need to go lifting weights or anything…”
I said, “I’ll give you 20 push ups right now.”
No acknowledgement. He just kept going. “But you should be walking a lot. Eating better. This is a tough surgery. You need to be prepared. If you were at Sloan Kettering, they would insist on doing the surgery now, but that’s not how I do it. We’re going to give you four infusions of kemo over the next two months. Then I’m going to get you back in here for a cat scan. The kemo should reduce the size of the growth in your liver. Then we can go in and cut it out. This does two things. Maybe we don’t have to take the entire left lobe of your liver. You can live with as little as 30% of your liver, but I don’t want to take that much of it. I want to take as little of that left lobe as possible. Liver cells regenerate, but not like replacing what we cut out. The liver just gets bigger to handle the capacity. The other thing we get out of doing kemo first is that we get to see if the kemo is working. If we pull the tumor and send it to pathology, they can see how many of the cancer cells are dead. This tells us how effective the kemo has been on those specific cancer cells. But to do this, I’m going to need you 15 pounds lighter and that liver to have no inflammation. I think it’s a reasonable amount of time to lose that amount of weight. So what do you think? Do you have any questions?”
I’m sure we had questions. Barbara was scribbling notes furiously. I know we said something, but it all turned into a jumble. He was talking fast. He was inspiring and overwhelming. I wanted to get to work.
Lunch was lunch. It was good to hang out with Barbara for a while before the infusion. Just to get a breath and catch up. Of course, the ATC was already behind schedule by the time I arrived for my 1pm appointment, so the breather was a little longer. We didn’t get called back until around 2:30pm.
Blood pressure 135/77.
The nurse was great. She explained everything again. The explanation was thorough and caused my anxiety to stir. She started the IV through my newly installed Central Port and started infusing saline and Zofran (anti nausea medication).
I could feel my anxiety building as we waited for the first infusion to complete. There’s nothing to be done for this. I can’t believe I haven’t had a full blown anxiety attack already. Bleeding from my ass, colectomy, pain, looking for a job, getting familiar with MD Anderson, moving, anticipation of kemo, port installation… Here it comes.
“The next infusion will be the Avastin.”
She said a bunch of other stuff about Avastin that I already knew. That shit will either cure you, or it will kill you (in a very small number of patients). My anxiety was off, and I had no way of reeling it back in. No way to tell myself that there’s a small difference between anxiety and excitement. No way to tell myself it’s not worth doing if it doesn’t cause you anxiety.
“So I’ll be back in 15 minutes to take your blood pressure.”
I said, “It’s going to be a white coat reading. I’m pretty sure of that.”
From wikipedia: White coat hypertension, more commonly known as white coat syndrome, is a phenomenon in which people exhibit a blood pressure level above the normal range, in a clinical setting, though they do not exhibit it in other settings. It is believed that the phenomenon is due to anxiety experienced during a clinic visit.
“Oh wow. You’re just like me. Well we’ll see. I’ll come back in 15 minutes. We have to do it every 15 minutes for the 90 minutes it will take to infuse the Avastin.”
I did everything I know how to do. Breaths that take longer than 13 seconds. Focusing on something else. Asking other people questions. None of it worked. The nurse came back 15 minutes later.
Blood pressure 145/83
The nurse said, “Well it’s really the diastolic number that we’re concerned with.”
Barbara said, “Yeah he doesn’t need to know that.”
I said, “I’ll get to work on that diastolic number.”
15 minutes later, she returned. She casually put her hand over the readout on the blood pressure machine. But I was having none of that.
“What is it?”
Blood pressure 153/85
I laughed. I couldn’t help it. It was so predictable. There’s no way I was going to get this under control.
15 minutes later, she turned the machine around before getting the reading. I made her tell me anyway.
Blood pressure 179/100
“I knew I could get that number up. Yes!”
“I’m just going to turn this machine off. I’ll tell you when you’re having a stroke.”
“Seriously. You’d have a lot of other symptoms if you were having a stroke.”
This was the right move. A lot of the time, I can just meditate and everything will be fine. But sometimes, I can’t tell myself anything. This was one of those moments. I just needed to forget that blood pressure was a thing.
4pm came and the shift change happened. It was the new nurse’s last day at MD Anderson. She was going to Texas Children’s. She showed me how to wander around the Ambulatory Treatment Center. I took this as a cue. I didn’t need to sit there with all that energy. I wandered around with my nest of tubes attached to an IV pole. I went to the bathroom.
I looked at all of the people in much worse shape than me. And there are. People that can’t even lift their heads. I wanted to know their stories (as I always do), but it was definitely the wrong moment.
A couple hours later, I wandered back to my room. Barbara reading. I watched the Astros in Game 1 of the ALDS on my phone. They were doing well.
Sidebar: What the hell with the cable contracts at the two hospitals I’ve been to. Neither one had an Astros game the entire time I was there. St. Joseph’s is two blocks from the stadium. You’d think people would snap that this is a pretty good distraction.
The nurse came in to tell me that the doctor had ordered Ativan for me to stay calm. By this time, I was fine. There’s only so much adrenalyn in the human body. Mine was spent. I told her I didn’t need it.
I distracted myself by asking the nurse about her new job. She’d always wanted to work with children. She had only been at MD Anderson for five months. I’m sure the Ambulatory Treatment Center was an intense job.
I feel like an anomaly even though I really don’t have a good sense of ordinary. In this case, I don’t know what the normal cancer story is all about. I know how I’m handling it. I don’t feel any different from any sort of measure of how people handle such things. I’m just doing what I do, and I don’t like being told what to do. Irreverence is an easy place for me to go with an attitude like that. Sometimes I think that it’s possible that I’m somehow screwing the cube with my approach to life. It’s hard to not be superstitious with the human disposition towards superstition, spirituality, and reverence. We are meaning making machines. Perhaps there’s a real reason for that. That isn’t the reason I refuse to walk that path. It just brings me no comfort. If I have a reflex that way, I always back away. The world is too vast and beautiful on its own without the unseen phantoms. I always feel like a veil of mysticism takes something away from that beauty.
I have a deep respect for faith. When examined, I really feel like there is little difference between my faith that there is no God and the faith of those I know that believe in a God. In both cases, there is a deep reverence for what is believed. I am in the minority. I don’t actually mind that, but I do notice that my lack of faith seems to trigger others into believing I think their faith is stupid. I don’t. I just don’t understand it. How can I expect those with faith to understand me. So I just try to avoid the subject. Accepting prayers is no skin off my back.
In three blog pieces on the subject of cancer, I have hit this topic twice. It makes sense. Mortality leads to reflection. I don’t know what’s going to happen. It’s this sense of the unknown that causes anxiety. It’s in this reflection of the infinite – in questioning a young nurse about her professional prospects. It was in understanding her motivation – in my compassion and empathy for her story that I found comfort.
The nurse left.
Barbara looked up from her book, “Are you okay?”
“Yes. I’m really grateful you came with me. I can’t even believe you’d take a whole day off just to come down here and spend it with me at MD Anderson. It’s remarkable. It’s like having my own private pathologist. I feel so privileged.”
“I’m just grateful that you allowed me to be a part of it.”
Allowed me to be a part of it? Yes. That’s it. I’m grateful that I’ve been allowed to be a part of it. This miracle of life and the infinite. I really was okay. No matter how this turns out, I was allowed to be a part of this.
The nurse came back to give me the last bag of Folfox before I left with a pump for 48 hours of dripping. I sat with the bag dripping. The Astros game over. Hours and hours past the time that we should have left,a taste came to my mucous membranes. Oozing through my pores. A taste and smell that I have escaped only rarely since that moment. Airplane glue and burning tires.
Barbara drove me home. She came inside to hug her niece and nephew. My friend Troy was waiting for me. Barbara gave Troy a bunch of documentation that she told him not to let me read. She gave him a hazmat kit in case the pump spilled chemicals on the floor. “Blah blah blah… Don’t let it touch your skin. Get the children and animals outside. Blah blah… two layers of gloves.”
Troy gave me an unmistakable look, “This shit is in your veins?”
“Straight into the jugular asshole.”
Troy spent the night on the couch. It’s a pullout couch that I acquired from my friend Elysa to accommodate overnight guests stay with me after the infusions. My kids shouldn’t be alone to deal with any of my emergencies. We watched youtube videos about animation and the making of the Dark Crystal series. He kept interrupting my cancer stories. Fucking jerk. Troy is even more of a contrarian than me. He didn’t pull the couch out. He’d sleep on a rock just to make your grandmother shit blankets and pillows.
In the morning, my brother John came to spend the rest of the weekend. He helped organize the house from the move. Cleaned up the house several times. Made sure I ate. Made sure the kids ate. To his frequent inquiries about how I was feeling, “I’m all right. It’s all airplane glue and burning tires.”
And as it has been since I got out of the hospital, Justine has been here when it’s quiet and everyone else has gone home. She’s spent the last two nights here with the kids. Anticipating things that I’ll need. Grocery shopping. Making sure I’m all right. We made a pact to be friends and raise our kids together separately. What a strange mess we’ve made of this life.
So many pieces. So many things to think about. So much hope and despair. And gratitude… I get to be a part of this.