How do David Byrne, Lyft, R.E.M. and the New York Yankees (including a couple of players) all intersect in one day? Easy. It is a day in the life of dealing with #cancer.
PART I
There's a city in my mind
Come along and take that ride
I am starting a drug trial shortly. Today I had to go Memorial Sloan Kettering in NYC for four appointments. EKG. Blood Draw. Meeting with members of the drug research team. And, of course, a CT scan. No day is complete unless I have imaging of some kind or another involved in my day. Taking photographs at ballgames or photos of my insides. It all counts.
I decided to take a Lyft to the appointments. I booked the ride yesterday using “schedule ahead.” I tried to pick a time that would get me there a bit early based on what I thought traffic would be at the time.
Though the surgery and radiation have seemed to start reducing my back pain, I am not pain free. If I miss a pill by an hour or two, I feel it.
Additionally, I have a regime to follow when I get into a car. It involves making sure I time taking the drugs so that they are starting to “hit” at a certain point. There is also a small increase in the dosage for one of the drugs. It generally has been working for car trips of about 15-20 minutes, 2 hours of whatever needs to be done at MSK, and then the trip back home. But today was going to be longer.
About an hour before my scheduled Lyft pick-up time, I received a text that I should be ready to be picked-up at 9:15. So I started keeping a careful eye on the clock to time things. When to put on clothes and shoes, which are still can be tough. Also, of course, when to take the pills.
I received a text at 9:05AM that the driver would be picking me up in 12 minutes. Perfect. Right after I received that text, I received a text from the driver.
Driver: Are you going to NYC?
Me: Yes
At 9:07AM another text from Lyft. A new driver. Would be there in 13 minutes. Which was still in the pick-up window.
At 9:10AM a text from Lyft. We found you a different driver (Driver #3). Will be there in 7 minutes. Still within the pick-up window. So I put my shoes on, took my backpack, went out to the driveway, closed the garage door.
I looked at my watch. 9:16AM Perfect timing. Started to look to see if I could see the car. Message alert. Lyft found me another driver, Driver #4. Arriving in 27 minutes.
At the 37 minute mark Driver #4 had not shown up. But they had not yet been replaced by a Driver #5. I figured that perhaps there was traffic. That is understandable.
I did not receive any further updates, such as Driver #4 being 5 minutes away. At the 38 minute mark, I received an alert that Driver #4 had arrived. Went to garage door opener, opened the garage door. I then scrambled, as much as I can, to get shoes on. Not a great job, sort of half on. Kind of.
As I am trying to get outside, received a notification Driver #4 is about to leave and I was going to be charged a no-show fee. Made it to the driveway, waved, got into the car and we headed into the city.
A nice guy. Had fun talking. But, as what often seems to happen, the directions from devices sometimes seem to be a bit creative. I mentioned one way to get to the GW. The driver thanked me. The way that the directions gave him was going to send him out onto the Thruway which he said he saw was incredibly backed-up when he passed it to pick me up.
We got on the Palisades Interstate Parkway. I eventually started having pain and became rather uncomfortable. I began to squirm around. (When I first got into the car, I mentioned to the driver that I have cancer. I wanted to let him know that any coughing or moving around is not Covid or bizarre thing happening with his passenger. I could just imagine how it would appear if I had a coughing fit while twisting around andcursing ;)) I then realized that between the delay in the pick-up times and the amount of time I had spent in the car, I was was probably due for additional pills. I usually take those about a 1/2 hour or so after the first set of drugs. So I took those.
We crossed the GW and got to the split which would head to the FDR (left) or Amsterdam (right). I checked my watch. Traffic was light and there was still a good chance that I would make it on time. But then the direction gremlins stepped in. I figured he would go to the FDR since I had mentioned the route. But he turned towards Amsterdam. I asked "Amsterdam not FDR?" as we approached another chance to get to the FDR.
I thought FDR was correct because that is what I am used to, but he said the directions had Amsterdam. He asked me what to do. I said perhaps there was an accident or traffic, so maybe the directions knew something I didn't. I did not want to make the wrong call. So we got off at Amsterdam. Then the driver made a right. Which was north. We were around 170th Street. MSK is at 74th. That is south.
After some more confusing directions that had us going in circles, I said, just keep heading south and east until we can get to the FDR. We made it. Shortly thereafter I saw the sign "Now Entering Road To Nowhere, Rd." Yup. That made sense at that point. Started humming the song. Got to MSK only 1/2 hour late even with all the delays.
PART II
Well, we know where we're goin'
But we don't know where we've been
Despite taking the pain medications, my back was squawking at MSK. To the point that if you were too close to me, there would have been a chance you may have heard a bad word. Or two. Or more. But I kept it down. I was pacing and doing anything to try to get comfortable.
I got into the chair for the EKG. The tech leaned the chair into a reclined position and it seemed the pain stopped. I was happy. I thought it broke the pain cycle broke. Been there, done that. All good. But eventually I had to sit back up. Pain was not gone.
They had to take another EKG. Though I was put back into the reclining position, the pain did not abate. I then waited for blood draw.
I kept on pacing, leaning, anything to get the pain down. Sitting was a non-starter. I would find something that would work for a minute or two, then the pain would start. I found one way to stand, leaning with my arms against a chair, that helped for a few minutes. That was good. By the time I got to the blood draw, nothing was really working. Wound up having my port accessed, and blood drawn, while standing up.
After I had the blood work, I checked my watch. It was going to be a long time before I could take any medicine. And I was hurting. I started doing the math. My CT was supposed to be at 1:15PM. But I still had to meet with research team before the CT. It was 12:45PM. Then my mind started trying to figure out when I could take more pain killers and how that would affect trying to get set up for the trip home. I could take them when they were next due, but that could possibly mean I would not be able to take what I needed for the trip home. Or I could delay the next round, deal with the pain and then try to make the trip home easier.
I went back to the main lobby and waited for my 11:30AM appointment with the research team. It was already 1:00PM. I was in pain. Finally at 2:00PM I took a pill. It was an hour later than I would have normally taken it. I figured I would try a half-dose later which would kind of put me in the ballpark for the ride home. Turns out there was no need to worry about that.
PART III
Takin' that ride to nowhere
We'll take that ride
When The World Is A Monster
Bad To Swallow You Whole
I started meeting with the research team. Between my standard treatments and drug trials, I have had 7 different "cocktails." So I am used to hearing about adverse effects. But for some reason this one is bothering me a bit more. It could be I am tired from the last three months. It could be how tough the last drug trial was. It could be that I am not sure how much this will really help.
The trial is for an immunotherapy combination, but basically my cancer does not respond to immunotherapy. They are working on it and one day they will figure it out. But this is a Phase I study. To get to Phase I there needs to be some indications that it can possibly work, but this one feels a bit nebulous to me.
Though some of the things that are in trials are boilerplate/required, this is the general purpose of this drug trial:
"This study will test the safety of the study treatment, a combination of the experimental drug MEDI9253 and durvalumab, to see what effects, if any, this treatment has on people with advanced or metastatic solid tumors. We will test increasing doses of MEDI9253, given on different dosing schedules, to find the best dose of MEDI9253 to give in combination with durvalumab. When we identify the highest dose that causes few or mild side effects, we will test the study treatment in new groups of study participants to find out whether MEDI9253 combined with durvalumab is an effective treatment for people with advanced or metastatic solid tumors. This study is the first to test MEDI9253 in people"
My cancer is incurable. That has has been clear for almost 5 years. The game is to slow things down. Better yet, keep things stable. If my cancer stopped growing right now, that would be fine. If the tumors shrink at all, extra bonus. There are so many exciting things happen with mRNA, virus, vaccines and the rest that there will be some amazing breakthroughs in the not so distant future.
We discussed many things during the meetings. I am not sure I feel that much more hopeful that it will work. On the other hand, I find that when I am not expecting much, I may be pleasantly surprised.
The one thing that did help was going through the adverse effects a bit more. Nothing is guaranteed. Nothing is promised. Every person is different and effects vary. But it seems that the MEDI9253 "flu feeling" seems to be the big one to expect. A lot Tylenol will be coming my way. Some of the other things that are of concern to me - lung inflammation, cytokine storms(?) and the others tend to be less of concern. Interventions for the more severe effects, such as steroids, are readily available.
Finished the meetings. At 4:15PM I was ready to start preparation for my 1:15PM CT scan. Three hours later than anticipated. Got my contrast drink. Usually there is about an hour between the drink and scan. Back to math. I figured I would be scanned about 5:00PM or so. It looked like I would be able to do my drug prep to get back home. Especially if I stopped for a coffee and waited a bit.
Takin' that ride to nowhere
We'll take that ride
Can't Get There From Here
(I've Been There I Know The Way)
Finished my scan. Then ordered a coffee. Then ordered a Lyft. At 5:38PM I received a notice that a driver (Driver #5 on the day) would be there in 9 minutes. You know where this is going, right? At 5:54PM the driver cancelled the ride. Driver #6 was up. Another great person. So even though I had issues with 4 out of 6 drivers, the two that showed were really good and made the day better.
Some final thoughts:
- I am not a doctor nor am I giving medical advice. I am relaying my general thought process in all of this. I think I explained things properly, but there is always a chance I can be off on technical aspects. I am human despite all the radiation I have received. Always double check things with doctors and other sources when dealing with medical matters.
- There are always going to be delays in life. It happens for a variety of reasons. Today, for instance, I was delayed by 1/2 hour or so. Which can cascade into my schedule and also affect everyone else. As a patient, I never feel like I am being rushed when I am being treated at MSK. My questions get answered. My concerns addressed. Making sure that is done properly for all patients is paramount. I much rather have patients treated like that. I always assume there will be delays. More so when multiple appointments are scheduled in a day.
- R.E.M. was two drivers away from being part of this twice.
- Between the standard treatments I have had, plus the drug trials, I have had 61* rounds of chemotherapy. The current drug trial does not have a chemotherapy component. So I am still officially at 61*. Just like the real single season HR record, set by Roger Maris. Until Aaron Judge breaks it later this year.
