Time passes way too quickly. It's remarkable to think it's been almost a month since I updated you all on how things are going. Part of that comes from the fact that there was the two + week recovery between the end of chemo and the beginning of radiation, so my body was just trying to heal. The other part is once the new routine began, I wanted to make sure I was set in my routine before I gave an update.
It's fair to say the last chemo treatment was the toughest. It absolutely left its mark in several ways: my feet decided to alternate between being hurt for one. There were a few days where my ankle hurt and I used my other foot more to compensate, then the ball of that foot would get overly sore right as the ankle recovered. I had been dealing with that on and off since the end of chemo, but the oncologists weren't really worried, just saying that during the process my body's healing ability wasn't going to be what it was. Still, it lingered, and that became a concern this week. I'll get to that in a minute.
Otherwise, there are some lingering effects that are more annoying than anything: the taste buds are still zapped and my hair is still pretty thin. There are a couple of other things, but as this is a public blog and I already flirt with TMI on here, I'll leave that alone.
The taste bud thing is the most annoying, really. The best way to describe it is that a metallic taste is hanging around my body, and when I try to eat or drink something, the flavor is affected. Really, it's something I've been dealing with since the beginning, but during the majority of chemo the effect would go away, and I would be able to eat normally. Now it's really just a matter of trying to be patient and work around the odd tastes. I've been told this isn't permanent, but since I'm taking a small form of chemo with my radiation I suspect it's going to hang around for a while.
The hair thing is annoying, but at least I still have some to work with. It's almost like an accelerated version of what happens as you get older, hair just comes out and you have less cover your shiny noggin. That one was a result of the Ironotecan, which will no longer be part of my treatment so the hope is that eventually my scalp realizes this and starts growing back what it let go. So far, that hasn't happened, but from what I understand that process can take a little while. It's allowed me to stretch out my haircuts at least, so that's been a positive.
I would say the other thing that happened since you last heard from me is that Kat and I decided to have a celebratory night out to mark the official end of chemo and the beginning of radiation. We hoped that two+ weeks at least would be enough to get myself as close to normal as possible so that we could enjoy a meal at perhaps our favorite chain: Texas Roadhouse. Back around Christmas, I bought a gift card for my Sister-in-Law down in Texas. As a reward for buying a gift card, the restaurant gave me a gift card back that would cover a good chunk of a meal, and we finally got a chance to treat ourselves to one with the benefit of staying in a hotel room instead of our apartment. It's fun to get away, even for a night, to disrupt the routine and try to enjoy life a little more. It was a great way to go into the next phase.
Monday saw another appointment with the oncologist to confirm everything was good, and then the first radiation treatment. Things were running a little behind, but luckily I was able to get the first treatment in, and get an 8:30 appointment set for every weekday from now until March 14th, with the exception of President's Day because here in the Northeast, they recognize that day and a lot of people get it off. I won't, of course, but other people do. Monday was the first day that my new daily routine started...and it's a lot of fun.
It starts with the alarm and doing what most people do after a full night's sleep, emptying your bladder because nature does its thing. The difference here is that I immediately drink two glasses of water after finishing. Why? Well, where they are actually aiming the radiation is also in the area where the bladder could get in the way and accidentally get shot unless it's full. When it's full, they can see it and it also kind of pushes itself out of the way. Thus, when most people are at their emptiest I have to refill.
So, I take my shower after those two glasses, clean up, get dressed, and get breakfast. I've never been much of a breakfast eater, but as part of this treatment I'm taking chemotherapy pills. A much smaller does of what I was taking by IV, but it's still five pills that have to be ingested twice a day, and the recommendation is that it's taken after a meal with a full glass of water. So, I have a modest breakfast to get food in my system, a can of coke so that I can have a pleasant demeanor, and then I down another glass of water along with the five chemo pills. Then, for good measure, I drink another glass of water just to make absolutely sure I have a full bladder. The last glass is taken about 45 minutes before my appointment, and I've found this works.
I then drive over to Beth Israel. The hospital has a special lot for everyone getting radiation treatments, with a temporary permit it allows you to park at the hospital for free which is a Godsend. during chemo, I was paying $7 each day I went. Doing that once every two weeks isn't bad, but doing that five days a week? Yeah, that'd add up. The only odd thing is that there's no direct entrance to the radiation department, so I have to walk up to the main entrance and, essentially, back from where I came to get to the elevator to go down one floor. At least I'm getting steps in, I guess.
Once at the department, I say hi to the absolutely wonderful people at the entrance desk, who seem to make it a point to smile at you and say hello when you come in. I then take a card that's been assigned to me and scan it at the desk, which lets them know I've arrived. I then immediately head to the changing rooms.
Here's where things get fun.
Now, where my cancer is, one would assume that they would want you to wear the gown open in the back, so they would have easy access. Nope. For reasons that haven't...fully...been explained to me, because I'm laying down on my stomach for the treatment they want the first gown I put on to be open in the front. Then I put on a second gown in reverse so that, you know, I don't flash everyone in the waiting room.
Not too long after I sit down they call me to the back where the machines are. I check in with my techs and show them my card, and they confirm who I am with a photo that was taken back when this process started. I then walk into the room and put down all my personal effects, take off my glasses, take off the second gown, and desperately clinch the front of the first gown for as long as I possibly can.
It must be a reflex at this point, or at least me trying to be polite about the fact that I would prefer to show them the lower half of my body as little as possible, because in the end the work is in vein. That's because I have to step up to the table where I will lie down, and that process is impossible to do while holding the gown closed.
Once down on the table, I lay my head on a triangle wedge (calling a pillow is being too kind), and look to my right while the rest of my body lies flat with my stomach in this spot on the table where it's supposed to sit. They raise my feet and put a wedge between them so I can be a little more comfortable, and then at that point I hold still. They start lining me up with the tattoos they put on my body, which includes them yanking on the sheet that covers the table to move me up or down, or shove me over as needed. I can't help them because I likely would move too much, plus I can't see the marks they are aiming for. So, I just lay there like a beached whale while they get me on the exact mark they need me to.
Did I mention I'm supposed to have a full bladder during this?
Once I'm at the mark, they leave the room and the process begins. The table slides to the machine, which is just this really big circle with a couple of arms that spins around slowly. It buzzes once in a while which I assume is the actual radiation being shot into my rear. That process takes maybe ten minutes, then the table slides back and the techs start removing the wedges.
Then I have to get off the table.
Just like it's difficult to keep the gown closed with one hand getting on top of the table, it's just as hard to do that getting off the table. I quickly hop down, just as quickly grasp the gown closed, and put the second gown back on. The techs tell me to have a good day, and I go off to change back into my regular clothes...after stopping in the restroom.
I can't imagine what this process is like for a woman having to get this for breast cancer, or a male getting treatment for testicular cancer. I get that the techs working in these rooms have seen all parts of the body and work in medicine, and thus they are completely desensitized to it. They are lovely people who are remarkably friendly as well as efficient. But you're still exposing yourself to another human being, and it takes some getting used to at a minimum. I try to keep that in mind through all of this, especially when this whole thing started with a camera going into my colon and three doctors feeling the tumor.
That's going to be my routine for the next month+. On Fridays the Radiation Oncologist comes down and we chat about how things are going. He'll look my skin over, checking for reactions, and making sure there aren't any adverse effects going on. Next week I also have a meeting with the regular Oncologist mostly to do the same thing. Once I'm done at the hospital, I head to the office to get six hours of work in. Thanks to my seniority and the lack of vacations I took leading up to this, I've got the time off built in to basically take two hours off each day for this treatment. Luckily work is understanding, and the job I have is one that can easily accommodate a modified schedule for the time being.
The routine was a little off during this week because of my right foot. After last Saturday's night out, I woke up on Sunday with it really sore after it being fine the night before. I attributed this to having to stand on it at an awkward angle for 40-45 minutes, due to the wait at the restaurant. The nurses at the hospital were worried about fluid building up or blood clots, so on Wednesday I ended up getting an ultrasound as well to make sure everything was good. In the end, it was just bruising and it got better each day. As I type this it's basically at 100%.
That's about the sum of things. As radiation goes on there's a likelihood I'm going to get, for lack of a better word, sunburned in the area they are treating which could make sitting uncomfortable again, and I have to be good about taking the chemo pills after morning and evening meals. I also can't drink while on the medicine, so no beers or bourbon to warm up during these cold New England Nights. I'm immensely thankful for having the Uber credits from my coworkers in case I wake up one morning for treatment and the weather is doing it's New England best, and we are taking advantage of the Blue Apron now so that's at least two nights a week I don't have to worry about picking up food. Despite the annoyances I'm reminded of just how lucky I am in so many ways, so my spirits are still good.
It hasn't all been peaches and cream, for sure. I outlined what's been annoying about the process so far, and the team of doctors have made it clear that there is a councilor I can talk to should everything get overwhelming. So far, though, I haven't needed it. This isn't modesty, a false bravado, or me trying to just "tough" my way through it. Things have gone so well in a lot of ways, between the good results and the lack of the worst of side effects, that it's provided a perspective that's allowed my spirits to stay up. I'm also keenly aware of people that are dealing with far worse: cancer plus family issues, or dealing with having kids, and so on. I'm able to get treatment, work it into my daily routine, and work like nothing is going on. That doesn't make me special or better than others, not at all. Each patient is a unique case with a unique treatment, and unique circumstances surrounding the treatment.
So with that, I just want to say thank you, again, for all of the support you've given so far. You may not think it's much, but anything to help keep the spirits up has been great.
I'll update this again in a couple weeks. I'll be well into treatment by then and we'll see if any effects start hitting. In the meantime, if you want something more specific or have questions, don't hesitate to reach out to me. I'm trying to let this be as open a book as possible.
