The past week started with getting a port implanted inside the body. For those of you unfamiliar with what I mean, basically when it comes time to deliver chemotherapy, there are a couple of options, but for most it's a direct entry into the blood stream. Instead of forcing you to take an IV every time, the doctors can install a device inside your chest that gives them direct access.
Think of it like Tony Stark's electromagnet in his chest, only...not quite. But same idea, a device installed for easy access and to help save your life.
The doctors wanted to implant the port this past Thursday, give me a day to recover, then start the chemo on Friday. The upshot of this was that I had to shower twice-once on Wednesday night and once on Thursday morning-and it would be my last shower until Sunday. Why two showers? Well to implant the port, they have to actually, you know, cut you open. To help make sure I was sterile, I showered with a special antibiotic soap around the incision area on Wednesday night, then did it again Thursday. You have to be careful when you do this, too, as the whole point is to reduce the chance of infection, so you have to have clean towels, clean clothes, etc. Not exactly easy in a small Boston apartment, but luckily I had planned for this last weekend and set aside the clothes.
The surgery at BIDMC was easy. The port was coming at a good time as they had to go into my hand for the IV. After getting you wired up, you are wheeled into this room with a long flat table and a HUGE monitor. Turns out to implant the port, they look at this live X-ray to make sure it gets implanted in the right spot. The monitor was turned to my head so I could actually see this as it happened. I had just enough medication to where this was cool to me. I guess it helped that it looked like an X-ray, black and white, instead of like a live look inside my body. But I could see my ribs, heart, lungs, and where the port came to rest. The nurses, techs, and doctors were all wonderful. They joked with me, we chuckled about the day, being the first patient of the day, and they made sure I was comfortable as the surgery occurred. They also made sure that if I showed any sign of feeling pain, they gave me some more anesthetic.
The bad part of all this was that I had to go home with a big gauze package on my left side, and could barely move my neck. It was annoying, and I had some mild pain, but they were nice enough to send me along with a prescription for some oxycontin. Only 6 pills, not enough to get hooked on, and they stressed that Tylenol would work just as well. I split the difference but using the Tylenol during the day and the narcotic at night to help me sleep as Friday would be a big day. The dressing also meant no showers until it could be fully removed, which meant Sunday. Ugh.
We got to "sleep in" as the first meeting wasn't until 9:15, which took a little bit of the stress off that morning. The first meeting showed immediately why the port is such a nice thing. First off, they took off the dressing and the stress on my neck was instantly better, and then to get the bloodwork they were able to instantly access the port. So much easier than trying to ball up a fist and getting another needle stuck in you!
We then sat down with our NP who was going to be the quarterback of this process. If I could stop and tell you one thing right here, it's ask questions. These are medical professionals, and there is no question that is out of bounds. Since last Wednesday I had had a couple of things pop in my head that I wanted some clarification on, and she was able to answer them clearly. We discussed all the potential side effects, and once again it was pointed out that they are in the realism business, not the false hope business. With that said, they were again very optimistic about where things stood with me. She noted the only blood marker that was above normal was the one they expected, the marker indicating a rectal tumor. This was a good thing and meant we were in a good place.
Next up was the chemo. The process is multi-layered. My process is one where a couple of drugs are put in at the hospital, in the chair. Once those are done, they then set me up with the slow drip pump that I go home with. This week only required a couple of hours at the hospital, but they are going to add another one in the next round that will take longer. As it was explained to me, the new drug is only meant to try to make sure I have bowel function once the surgery is done. If I don't take to the medicine or the side effects are too severe, we'll sacrifice it in lieu of the drugs to kill the cancer.
So, the two hours passed by pretty quickly. We were really lucky in that we managed to get a room to ourselves. While the drugs were going in, my doctor came by to talk. He apologized for not seeing me sooner but explained he had a procedure that took longer and it held him up. After explaining to him that I understood I was not his only patient, he sheepishly said that he still felt bad that he couldn't be there at the beginning of my first chemo.
Man, I like this guy.
After talking over my nausea meds, he also wrote me up a script for a nerve medicine. Basically, he's concerned that while this is ongoing, I'll have trouble sitting for a long period of time, and this new RX should help numb the nerves in that area, allowing me to function a little better. He then said good-bye by looking over my blood work, remarking "You wouldn't know you have cancer by your blood work. Everything looks so good, I really think we're going to get this thing!"
Not long after he left, The alarms rang and it was time for the pump to be installed. Five minutes later, I'm walking outside with my new accessory. We're calling it Al's Ass-tchel.
I was shocked at how relatively good I felt. The only annoying thing was I had to pee. A lot. I wasn't until the third time that I realized that they had used a ton of saline to put in with the medicine, and well, all that salt water has to go somewhere. Luckily we didn't have to worry about grabbing lunch because they actually serve you sandwiches on the floor. The nurses on the floor were so bright and cheerful, friendly, just the attitude you want for people getting treatment.
And yes, I represented the Hurricanes in Boston. They won that night, thank you very much.
Lesson 1 learned: I can drive back and forth for treatment from here on out, or at least I'll try to. $7 for parking as opposed to $30 for two rideshares is very appealing.
We got back to the house to a couple of packages waiting for us. One, a great looking recipe book that one of our friends sent on. It'll be good to plan for future treatment weekends. The other...an amazon box which was a surprise cause we usually don't have stuff sent to our apartment. Inside?
The note inside "We heard you had a port installed, so you need a ship for it. And when you have a ship, you need a captain's hat."
Did I mention I have good friends? The lego is in the box still, saving it for a weekend where I don't have anything to distract me.
The rest of the weekend was about the pump. I had to carry the damn thing for 46 hours, which mean until 12:30 today (Sunday) that thing was literally attached to my hip. By Friday evening I wasn't feeling wonderful. Not nauseous really just a little worn out. We ordered some Japanese in, as steamed chicken dumplings and tempura fried sweet potato sushi rolls sounded good. I ate all the food, watched the Canes beat Columbus, and then went to bed to finish watching Boston beat NY in game 1. Insomnia to a certain extent bit me on Friday as I was attuned to just about every new feeling, and was also fearful of pulling the tubing out of my chemo pump.
I did ultimately get a decent amount of sleep on Friday night, and Saturday passed mostly in a haze. I didn't eat a lot, some peanut butter filled pretzels, cheese toast, chicken strips, and had some wonderful chicken pho for dinner. We even got out and walked around the local Wegman's just so I could get up and out. Kathleen was able to get out for a swim which helped her out, but for the most part by the end of the day I was done. I decided I needed to sleep, so I took another painkiller, and by 10 PM I was out like a light.
I slept 10 hours, and woke without any pain, and almost restless. I assured Kat that I was good for her to go to work, and when the time came I drove over to BIDMC to have the pump removed. Again, the nurse was friendly, said everything looked good, and also gave me a sticker to where I was able to park there for free! So hey, as long as I can drive over, the transport should at least not be as expensive as we thought.
Overall, for a first weekend it couldn't have gone much better. There was some unexpected shoulder numbness, the back of my throat didn't like cold liquids for a period of time, I had a tooth that decided to bother me yesterday, and ultimately laying down for so long messed me up. After having such a long night of sleep, I've been battling some restlessness today, but I blame that more on the heavy night's sleep and two of my teams having some hellacious games today. I also feel a ton better as I got a nice 30 minute shower at 4:30, my first shower since 7 AM Thursday morning.
We'll see how it goes from here. I've been warned that sometimes side effects will hit a few days after, and some people end up being really tired for a day or two after the end of the treatment. The plan right now is to go into work like normal, as the job does not require a lot of physical exertion. They are of course understanding if I need time, but to be able to just get back to a routine is something I'm looking forward to. Hell, this week will be my first normal one in the past three, and in a weird way I'm eager to just have a straight 40-hour week.
So, again, let me take some time to say "Thank You." The positive messages that have been given to me as I go through this have been awesome. To have so many people care about you, to take time to reach out, it means the world to me. Every bit of positive force will help.
I'm also going to take some time to do something I didn't want to do. Adam Pohl, one of my wonderful friends who was in my wedding and is a fraternity brother, started a Go Fund Me for me. I told him it wasn't necessary, as costs/etc weren't something we weren't going to worry about now, but so many people wanted to find some way that they could help, and for them it feels good that even if they can't be there, they can add some money to this fund.
So, I share this not because I'm asking you to contribute. I share this because I know a lot of you want to help and you just don't know how. Adam has given you an outlet. There is no minimum, and if you aren't set at a point in your life to where you can, don't worry! I've been there! There are so many people out there asking and deserving of help that I understand if funds are tight. I, of course, thank each and every one of you who have contributed so far. It means the world to me that you just want to help. Even if you can't contribute, if you want to share the link with someone who does, it would be wonderful.
Here's the link: https://www.gofundme.com/66g9ulc
Thank you so much for all of the positive energy you all have been providing. Keep it up, and direct some over to my better half as well. On top of taking care of a cancer patient, she's still focusing on Nursing school and working part time. She's been remarkable in how she's handled it, as well as keeping as much off my plate as possible. She's been an angel in my corner, and I don't know where I'd be without her. So while you think of me...think of her, too.
Onward to the next round!
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