As I've come to know what to expect...mostly...from when we have a treatment weekend, I thought I'd go a little different and type up what's going on while sitting in the chair. So, greetings from Beth Israel Medical Center's Shapiro Center's Ninth Floor.
Man that's a mouthful.
Treatment Fridays are one of the ultimate definitions of "hurry up and wait." Because of the length of my treatment, I really have no choice but to take a morning appointment so that everything can be done before the floor closes down. So, for anyone thinking "well at least he gets to sleep in a little on treatment days," forget it. The alarm goes of at the same time, and with the traffic around the Longwood area I almost spend the same amount of time in the car that I do heading to work. This week also saw the complication of snow for the first time, a real danger of the timing of my treatment. The good news is that the storm that hit the east coast did so during the evening, and by the time I woke up it had warmed up and turned over to rain.
Let me tell you, the moment I walked up to my car to see the only snow left on it was on the windshield was one of the best moments of my day. For those of you that haven't had the pleasure of cleaning snow off of your car, it can be an exhausting process. First off it requires the investment of a snow brush, and depending on how good that brush is can significantly impact how much work you have to do. When it's only on your windshield AND you remembered to leave your wipers up so they don't freeze to the glass, you've got yourself a good start to the day.
The day at the hospital ends up being basically the length of a work day. I check in on the Ninth floor at 8 am, and walk to the treatment area to get my vitals and have the line installed into my port. The nurse then grabs three vials of blood to be sent down to the lab for testing. They can test for just about everything, but mostly they are looking at blood cell counts, liver function, sometimes testing the cancer marker, all that fun stuff. The blood draws make sure nothing is in the danger zone and can affect what they do with the treatment.
Once the draw is done, it's back to the waiting room just to be called back to an exam room to speak with my Oncologist and the NP he works with. I mostly deal with the NP, who is great. We chat about how I feel, any new symptoms that popped up, and just get a general feel for how things are progressing. She's easy to talk to, which helps considering the type of cancer I'm dealing with leads to a lot of frank stuff you don't talk about in polite company. Those conversations so far have ended with no surprises. She then grabs the oncologist, who checks over the results, talks a little more big picture about where we are, and is responsible for ordering the medicine I'll be treated with during each round.
Remember the blood draw? Today's showed some issues with the liver function, which led to a discussion about whether I've added a medicine to the mix or increased my drinking. As I'm only taking what has been prescribed save for some heartburn medicine that they are aware of, and my alcohol intake has been one drink on the non-treatment weekends, then it's pretty clear that the issue is the chemo. The good news is that they've been very aggressive with this treatment, which means they've left themselves some room to dial things back and still get the same result. Thus, today's treatment of the main 5FU drug will be scaled back slightly to avoid doing any more damage to that wonderful organ.
It should also be noted both the oncologist and the NP approve of the #KACA and #MAAGA bracelet. Both got a hearty chuckle when they saw it for the first time and approve of the message.
Once the visit with the medical team is done, it's back to the waiting room. By now, you're looking at around 10 AM and the room has pretty much filled up with folks waiting to be seen and treated. The wait is mostly to get all the medicine and treatment processed and assign me a chair. Eventually, the name is called again and I make my way back to the treatment area to sit at a station headed by a pink reclining chair.
Each station has a cart full of the supplies needed, the IV drip pole, and the reclining chair that is my home for the next few hours. My nurse will eventually greet me, talk about anything that changed over the last treatment, and then hook up the medicine into the line coming out of my port. They first put in some pre-meds to get my body ready, then one bag of chemo, then the second round. All told, once the medicine goes in it'll take about four hours for everything to be put in. These four hours will include multiple trips to the restroom as that is a lot of saline to put in your body with the rest of the drugs. It's not as easy as it sounds, as you have to unplug the drip pole from the power outlets and wheel that sucker with you to the restroom. You also have to take care to not pull any lines out while going through this process.
Once all that medicine is done, my little medicine pump is installed with the final round of treatment. The pump becomes my buddy for the next 46 hours, and again the goal is to make sure to not pull the line out of..anything...or to make sure to not damage the device that is providing this medicine to me. It's easy to forget when walking that you have this line just hanging off of you that can catch on doors, chairs, whatever. The nice thing is that, usually, I don't feel hamstrung in terms of energy while going through this process, and that means that Kat and I can take an outing on Saturday which helps us do something that feels "normal." This involves a visit to the grocery store for supplies, somewhere for dinner, and then a trip back home. It's not much, but it breaks the monotony of the weekend.
I've been lucky so far that during the weekend I get treated that I feel good enough to do some normal activities, but what stings is that I can't do more. For instance, this weekend Kat and I would love to go see "The Crimes of Grindelwald." However, as this is the treatment weekend I have to pass because a) you never know what might happen and you don't want to be in a theater if a wave of nausea or worse hits b) because of my cold sensitivity I can't really have a drink during the movie, which means I can't really have popcorn, and that, my friends, kills the movie experience for me. Anyone that knows me well knows I HAVE to have some popcorn at the theater. Yes, I'm that person. So, we'll figure out a way to see it next weekend.
After 46 hours I go back to BIDMC to have the pump taken off, the line taken out, and to have a Neulasta installed. You may have seen commercials on this device, basically it's a drug that helps lower the risk of infection during chemotherapy because, well, chemo itself can increase the risk of infection. It's a little device they put on your arm, and once activated it injects a tiny needle into your arm and sits there for 27 hours. At the 27 hour mark, it beeps and then takes 45 minutes to actually deliver the medicine.
Now, you may be looking at the fact that an electronic pump is attached to me for 46 hours, and then a little electronic device installed after that for 27 hours, and wonder, "Al, how do you bathe?" Excellent question, the answer is...I don't. The last shower I will take until Tuesday morning was this morning. Luckily, for Monday's I have a spray bottle for my hair, deodorant for the body, and a body spray for the rest so that I don't offend my co-workers. Needless to say that shower on Tuesday feels good.
That's a treatment weekend. It's not overly stressful, it just has its different levels of inconvenience. It's made easier having Kathleen around to help me out during different spots, and on the Mondays the Neulasta is installed I take a couple of hours off from work. From there, it's about recovering from the treatment and getting ready for the next one.
The last couple of weeks have followed with that recovery. It took until Thursday last week before soda tasted good again, and even though I am expanding my coffee palate, my system isn't used to drinking the stuff yet. So, I've been trying to drink the wonderful gifts provided but it'll take some time as I'm not quite used to it yet.
Anyway, now it's time to just sit back and let the medicine do its work. Hope everyone has a great weekend and a great Thanksgiving, and a small reminder, if you feel so compelled to help, there's a GoFundMe that's been set up for me, thanks to the wonderful Adam Pohl. Thank you, so much, for everyone who has already contributed. You have no idea how much it has helped me during a time when so much else has been going on. It's added a level of stability that is huge, so thank you so much.
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