“Find your new normal,” they said. Well, life was anything but normal before my diagnosis and I’ve since discovered a whole new underground garage of not normal. I now wash my hands constantly, tell my sons to wash their hands constantly, not to cough or sneeze near me and I pretty much sterilize the house on a daily basis. My OCD has been magnified, with great reason. What most people can fight off, right now, I can’t. I’m in the throes of the rough stuff of chemo. This red devil has met the red devil of chemo and I am taking it like a champ. It does things, weird things to you, on top of lingering weirdness from surgery.
My husband wakes up before me and makes coffee every morning. My ass doesn’t leave the bed until a few minutes after I hear the whirr of the coffee bean grinder. Tuesday, it was like drinking warm water, blech. Second cup wasn’t any better. I thought he made a poor pot of coffee, which occasionally happens. So, after dropping the boys off at school, I hit Dunkin Donuts. More grossness. That too tasted like warm water. Thanks chemo for taking my taste buds for coffee. I have since decided to add more green grossness to my smoothies, in hopes of keeping me super healthy through cold and flu season and chemo. THAT I can taste. FU chemo.
I feel 95% like myself, aside from being tired early in the day. I’m done by dinner time and when I fall asleep, it’s fast and hard and there’s no getting me up. I actually sleep through the night aside from waking up a few times with the thirsties. And I’m always thirsty. I guess we could all use a little extra water for hydration but three liters a day seems to be my new normal. My eye balls may just float out of my head!
Hearing. Oh God Help Me. I have awesome hearing which now is magnified. Plus I have an auditory processing disorder. It’s sending me over the edge. Again, FU chemo. You suck.
I have almost full range of motion, mainly the right arm. Left arm is a little rough as that’s where the nodes were taken from. Part of that left arm and the entire arm pit are numb but sometimes itches. Seriously, it itches and I can’t scratch it because I don’t feel it. Lovely.
Traditions take a little bit of a hit as well. This year, instead of driving out for Thanksgiving dinner with family, we chose to stay home and hit a local place for their thanksgiving dinner buffet. Now I am lady in the streets but definitely a freak at the buffet!!! So much good food, relaxing night and no clean up. I’d say that’s winning! It was nice to go home and change into pajamas early…or was it?
Earlier in the day, I noticed a tiny red dot near my right arm pit, more towards the back. I covered it with a band aid so as not to get irritated by my dress. Irritated? It got angry!! It had more than doubled in size and looked all wrong. Normally, when something like that happens, I pop the life out of it. Nope. Can’t do that while on chemo. Instead I had to call the oncologist at 9pm on Thanksgiving night. “Might be nothing, could be something, might be fine by morning but could be major by then…” Off to the Emergency Room I went. Now that was an experience!!!
Luckily, he called while I was heading out. They processed me very fast and gave me a face mask to keep me safe. I went to sit where there was no one. Of course that meant that a large and loud family decided to sit near me and freaking cough and sneeze and talk about how they take antibiotics at the first sign of being sick because some doctor in New York prescribed a large quantity to the grandmother. Lovely. I moved. I did get to hear them all get reprimanded for trying to sneak four people in to see who they were visiting.
When I was called, I was put into an isolation room in the Emergency Area. I had no complaints about that! I had my own bathroom! Awesome! They took some blood to check my levels and came back to tell me my counts were all within normal limits. Holy shit, I bounced back pretty fast from the first round! The doctor came in and looked at my growing bubble of grossness and told me it looks like the beginnings of an abscess and was not going to be a big deal, just hd to lance it off and squeeze it out. When you’ve gone through what I have over the past 6 weeks, that is not a big deal at all. While he was cutting and squeezing, I called him doctor pimple popper. He had to stop because he was laughing. This whole time, I was hooked up for pulse, blood pressure and oxygen. Blood pressure and oxygen were fine. My pulse was through the roof. It concerned him so he ordered more blood work and a saline drip for hydration. I’ve become a human pin cushion. His thought was that sometimes an elevated pulse can be from being slightly dehydrated. I had three liters of water in me but ok.
Hydration comes with its own woes, when you’re hooked up to a bunch of things. Remember those three liters? What goes in must come out and now they’re adding more. I had to keep buzzing for a nurse to unhook me so I could use the bathroom, each time my pulse would jack up again. I felt good though. It was definitely a good thing to be in my own little suite where the bathroom was right there!!
A different nurse came in to draw more blood and I looked at the series of bottles and tubes she had and asked her if she was planning on feeding a family of vampires at the nurses station and to please leave a little bit left for me! All of that blood work came back fine. The doctor came in to see me and said if it were not for the heart rate, he’d be more than happy to release me but instead he was going to do an EKG. That was fine, the only thing was a rapid heart beat. Nothing funky. He looked at me and said “If we can’t get this under control, I need to keep you overnight in observation…3…2…1…and there it is.” My heart rate shot up again. FML.
I decided to try meditation on my hospital bed, normally works like a charm. My nurse walked in and I opened one eye and said “shhhhhh.’ She giggled and walked back out. Nothing was working and it was time to move me.
I decided to ask the orderly to please make vroom vroom and beeping noises while wheeling me around. After he stopped laughing, he said ok. Did I mention how wonderful everyone was to me there? Apparently my vampire nurse liked me and wanted to come along and she added to the car sounds. They totally rocked.
New floor, new unit, new nurses but no more needles!! They got me settled into my new isolation suite and hooked me back up to a bunch of stuff, including more saline (third liter of that now) and I got to wear a heart monitor over night so they could monitor me without disturbing me. Instead, I had to keep buzzing them. You guessed it, potty breaks!! I managed to get a whole hour of sleep! Go me.
The ER doctor ordered an internist and a cardiology consult for me in the morning. Breakfast came and then did the internist, she was amused with me. “you look outrageously amazing for someone 9 days out of AC chemo!" My pulse was slowing down and she was willing to say I was free, pending cardiologist. Time went on and no cardiologist. Suddenly I heard the clicking of heels down the hall with a loud voice and all of a sudden my oncologist came bursting into my room. She said she saw that I was in the hospital and it’s her day off but she needed to come see me anyway. She explained that sometimes, my particular chemo will send the heart rate racing and it comes back down within a month of stopping. THIS is my side effect. She was extremely pleased with all of the lab work and said the abscess and three medications will not delay my next round. She was then on a mission to get me out ASAP. Within 5 minutes, the cardiologist was in my room, armed with the knowledge from my oncologist. She spend quite some time checking me and listening to my heart and lungs. She said there was no reason to keep me and I was definitely good to go home with no worries. I was checked in at 9:30pm and left at 1:05pm. Freedom!!!
I raced home because I was tired, hungry, dirty and most of all, I missed my husband and kids so bad. I just wanted to be with my family. While I was in the hospital, my husband and cousin put together an epic Thanksgiving feast. My sons were thrilled to hang out with their cousin and I was excited to see them as well. Thanksgiving came to us on Friday and I am grateful.
I could choose to look at this as “ugh, they would not let me go no matter how I protested and told them I was completely chill,” and be all pissy about it. Instead, I know I am lucky. They would not let me go until THEY felt certain I was ok. My word was not good enough and I am cool with that. They are all experts in their own fields. I’m not. Should anything have happened, I was where I needed to be. Oddly enough, once it was decided I wasn’t going home, I gave up hoping to go and my heart rate came down a bit. Go figure.
This week will be round two of the red devil. I will be fifty percent done with the rough stuff as of Wednesday night. I am armed and ready to battle. I’ve got my electrolyte drinks and water bottles in my chemo bag of tricks. I’ll be starting my Claritin and now know that Milk of Magnesia should not be taken in a full dose after two days of eating prunes. No joke, trust me. That whole situation is not happening again. As I sit here and can still feel my hair, I know in a few days, that will be gone. I am not sure how I will react to seeing it fall out but I am prepared. I have a wig, chemo beanies and pretty scarves. .” A major part of all of this is being informed and prepared. Knowledge is power and I need to have some sort of feeling that I have a say in all of this. Chemo makes it hard to be a control freak, damn it!
I have a pink bob wig for the next few rounds of chemo in December. “On Wednesdays, we wear pink.” I look ridiculous in it. Good. It makes me laugh. Cancer took my boobs and chemo is taking my hair but neither of those bitches are taking my feisty spirit!
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