Fuck Cancer
Time for an Update
I really wanted to be better about logging my symptoms and feelings during this journey. But honestly? When you feel crummy, the absolute last thing you want to do is write about it.
Today, however, is a good day. We’ll get into the why in a moment, but first, let’s talk meds.
I was prescribed two different anti-nausea medications: Zofran and Compazine. Because they pumped me full of Zofran during my first day of chemo, I wasn’t allowed to touch it again for three days. During that waiting period, Compazine was my only option.
I actually have two different dosages of Zofran. I had 4 mg pills left over from my hospital visits, but the chemo care center gave me 8 mg pills. Until today, I’d only been taking the 4 mg doses because I wanted to use them up. The problem was, they weren’t even touching the nausea, so I was constantly supplementing with Compazine just to get by.
This morning, I changed tactics. I woke up at 5:00 AM and took the 8 mg Zofran right out of the gate. *Knocks on wood* So far, it’s working beautifully. For the first time since Wednesday, the nausea is finally under control, and I haven’t had to touch the Compazine all day. I am absolutely thrilled.
Of course, it’s always something. On Friday, I started dealing with loose stools, which has officially graduated into full-blown runs today. It’s definitely not my favorite thing in the world, but if I’m being completely honest, as long as I’m not leaving the house, I can handle this much better than the nausea.
The cancer center gave me Imodium, but I’ve only taken one dose back on Friday when I had to be somewhere. My mother always drilled it into my head that if your body is trying to get rid of something, it’s for a reason. In my mind, if my body is currently dumping dead cancer cells (I have no idea if that’s scientifically accurate, but let’s go with it), I’d rather they exit the building than hang around. But don’t worry, if it gets too bad, I promise I’ll take another dose.
My other major shadow has been a pretty constant headache. Now that I’m sitting here thinking about it, though… I’m wondering if it might just be dehydration.
On the bright side, I managed to do some minimal workouts on Friday and Saturday. I got through 45 minutes of cardio on Friday and about 30 minutes yesterday. It wasn’t my usual performance, but I was moving my body, so I’m chalking that up as a win. I could probably manage a little something today, too, but given my current need to be within sprinting distance of a toilet, I’m going to play it by ear.
Next week is my “rest” week for the chemo, and I am holding onto the hope that I’ll start feeling a bit more like myself.
I have to admit, I hit a really dark, depressed wall last night. It hit me that in just a week, I have to turn around and do this all over again. Those heavy, terrifying thoughts crept in: I don’t know if I can do this again… It’s especially daunting knowing they say chemo gets progressively worse with each cycle.
This whole process is so incredibly exhausting. Physically, mentally, and emotionally. To feel this drained when I’m only just starting makes looking down the road at the long haul feel completely overwhelming. I know I shouldn’t let my mind wander down that path this early in the game.
But damn, it is so hard not to.
Pump It Up!
Welp, I got the pump out an hour ago.
So here is my new regime for the next 12 weeks:
Monday – show up at the cancer center, get my five hour infusion, leave with my pump attached.
Tuesday – live my best live with a pump attached to Kuato on a shitty amount of sleep from not being able to fall asleep due to the steroid they gave me at the cancer center.
Wednesday – Feel a bit crummy all day, maybe take a nap because I woke up nauseous in the middle of the night and couldn’t get back to sleep. Go into the cancer center mid day and get the pump disconnected.
The next 11 days – try to heal my body for the next round of chemo.
Lather, rinse, repeat.
So other than some mild nausea and the shakiness, the only other symptoms that have been hanging out are a tingling in my jaw when I eat something for the first one or two bites. You know when you eat a really sour candy and it gives you that feeling in your jaw? Like that. Also my sleep hasn’t been the best, but I think that might be because I’ve been attached to the pump and I sleep light hoping it doesn’t fall off the bed or I choke myself out with the tubing.
Oh and the constipation fun started this morning. That was not pleasant but at least I was able to eventually go. I have some miralax that they gave me in the hospital if I need it, but I don’t quite dare to use it as one of the other possible side effects is diarrhea.
Such a fun entry this is!
Remembering to eat is now a thing. Given that I’ve been in a calorie deficit for the better part of five years, I NEVER thought this would be a thing. I’ve had food noise for the last four years or so and it gets pretty bad. I have joked that GLP1’s would do me no good because I would just eat right through that shit and I really thought I could/would, but now I’m thinking no.
Nothing sounds good to eat and then I get caught up in the cycle of being hungry and not knowing it so that causes even more nausea and so on and so forth. I’m trying to force myself to have small snacks all the time so there is a base on my tummy at least so I know if it’s starvation or actual nausea.
The nurse told me something today and I haven’t googled it to see if it’s true or not because I kind of want to believe it, even if it’s not.
She said that the next couple of days are going to make me feel really crummy because the chemo has gone through and killed a bunch of cancer cells and now my body is going to start dumping those dead cells and that is why I’ll feel icky.
I like the idea of thinking of me getting sick because those motherfucking cancer cells are dying. So even if it’s not true, that is what I’m choosing to believe. 🙂
It does feel good to not have the pump attached to me so we’re going to put that in the win column.
Please enjoy a bonus photo of Shilo with her tongue sticking out while she lays next to me in bed.
First Day of Chemo
Today was my very first day of chemotherapy.
Woke up and got an hour of cardio in (walking at a very high incline since my port still hurts too much to run/jump around.
Showered and then we were ready to go.
The chemo place is conveniently located in the business park that Rob works in so he drove me there, got me settled in my chair (he was only allowed to come in to help me settle in but no visitors are actually allowed in there for the chemo treatments) and away we went.
The thing that I have been most worried about is that somehow the chemo port wasn’t going to work correctly. They told me at the hospital that they tested it after putting it in and everything but I am not only a hypochondriac, but I also think that the worst is going to happen to me in any given situation, so you do the math…
I was prescribed some lidocaine cream for my port entrance to ease with the stick when I got there so I applied that before I left the house and covered it with saran wrap per their orders.
My appointment time was 9:30. I think it was around ten that they came by and hooked up my port to take some blood work. The way that they work is they have to check your labs before the chemo to make sure your body is ready to handle it. If the labs come back too low, they have to reschedule you to try again. Thankfully no issues since this was my first time.
My nurse walked me through everything she was doing and because she knew I was nervous about the port, she was extra careful to let me know every step of the way what she was going to do. Thanks to the numbing cream, I didn’t feel the needle go in and I’m ever so grateful for that.
Once she took the blood she ran it to the lab and we had to wait 30-45 minutes to get the results and since they were good, we were good to go.
The first things they gave me were a steroid, an anti nausea med and a shot to help stave off any stomach cramps or diarrhea. That took about 30-45 minutes, I think, it could have been an hour.
Once those were done I got the actual chemo. I had two 
different bags done at an hour and a half each. The second one is the one that is supposed to make me really sensitive to cold and I think I am feeling that a little just now because my room temp water in this house is kind of cold because it’s only like 65 in here so while I haven’t drunk it yet to see what happens, it made my fingers tingle a bit when I picked up the bottle. A little weird.
Around 3:15 they finished up the last bag and got me fitted for my pump. It’s basically a little fluid sphere that will pump out over the next 46 hours with no battery or electricity and then I go back at three on Wednesday to get it removed and my line flushed until the next round of chemo.
Things I noticed during the actual infusion:
I got twitchy.
My eyes will get twitchy if I’m over tired, stressed or both. That is typically the only time I notice that. And it’s usually one or the other. Both eyes got a little twitchy as well as my right index finger.
I got shaky.
This is ongoing and I noticed it a couple of hours in. I don’t get shaky usually so it was noticeable, like I when I forget to eat (which NEVER happens) but I had eaten plenty so I know that’s not it.
Mother of all hot flashes.
About a half an hour or an hour into the first chemo bag I got sweaty! Now, they have taken me off my HRT and I am currently on the 6th day (!!!) of spotting on my period (which as a sub-category, turned into a full blown period today during chemo) so I get that part of it was probably hormones but it lasted until I got home just now and got into less clothes and a cooler temperature house.
Dye Eyes.
This is ongoing as well, I got this towards the end, just very gritty dry eyes.
I’m just now starting to get the hints of nausea so I think I’m going to take some of my anti-nausea meds in a few minutes (not allowed to take the zofran for a couple of days as that is what they put in my IV this morning but I have something called Compazine I can take).
So that is the long and the short of my chemo session at the care center today. The pump is sitting in a mini fanny pack strapped to my chest as I type this propped up on pillows in bed.
They said the steroid might make it kind of hard to sleep tonight so we’ll see how that goes.
I’ll update if anything fun, icky or interesting happens. Happy First Chemo Day!!!
Updates and shit…
I guess I’m getting used to my port…
A little.
But it still freaks me out because it is a foreign object IN MY BODY that I can SEE THROUGH THE SKIN and that is NOT FUCKING NORMAL!
Blech.
It still hurts but I was able to work out a bit and do a small amount of running today so I guess it’s healing okay?
Had my education meeting with the chemo peeps on Tuesday and I think it went well. The NP was really sweet and kept telling us that no questions were stupid and never made us feel like we were being dumb or asking too many things. I didn’t feel as overwhelmed as I did the first time I talked with the oncologist so progress?
According to the side effects sheets, with my particular chemo cocktail, I’m either going to be constipated or shitting my brains out. Puking or nauseated. Mouth sores, which I kind of knew about from TV but also those sores can appear from any place along that track that goes from your mouth all the way to your anus (fun!). It’s possible I’m going to be allergic to cold things. Like not sensitive, allergic. The NP said her sister had this same ingredient and she had a sip of ice water once and her entire mouth and jaw froze up and she couldn’t talk for a couple of hours. She also got into a car once where the air conditioner was blasting and her eyes swole shut. The funniest one to me is that my bodily fluids (all of them!) are going to be toxic. I told my husband that I’m going to be toxic in more ways than just my personality now!
The thing that bothers me right now about the chemo is the unknown. I don’t know how my body is going to react to it so I can’t really plan anything.
Yesterday was my last day at work for awhile.
For more reasons then I want to type out here, I’m going on disability on Monday when I start my chemo. I don’t really want to talk about it right now, but I want to chronicle everything so I’m putting it in here.
My brain is not a great place to be the last couple of days.
Chemo Ports and Birthdays
Today I got my chemo port implanted in my chest/neck.
This was probably the procedure I’ve been most scared of (other than the actual whipple surgery) because they are actually putting a foreign object into my vascular system but it turned out to be the easiest so far.
I showed up at the hospital around 7:30, signed in and was taken back almost immediately after sitting down in the waiting room. They took me to a room in radiology that had about six beds lined up, three on each side, all curtained off. I was given a personal items bag and a wrist band (I’m really getting quite a collection on both of those) and of course the ever flattering hospital gown that opens in the back. I was told I could keep my bottoms on but everything above the waist had to go. Before I could change, the doctor came in and explained the procedure to me.
He had a little book with a physical example of the port and how it would look and feel under the skin, which while it gave me the wiggins, I found helpful. He explained that they would be implanting it in my right side because that has been proven to be the most efficient and that goes into my chest and has a tube that goes into my neck (vein?). I didn’t know about the neck part and that really started to freak me out.
He left and I changed and laid down. The nurse came in and started my IV and it was the most painless one I’ve had put in since this whole journey started so I was very grateful for that. Once she was done it was about a 10 or 15 minutes of waiting that felt like forever because I could hear every little thing that all the other patients in the room were going through and since I’m very empathetic I was starting to get more anxiety from what they were going through as well.
Finally, a nurse came out and wheeled me into the room where the magic was going to happen.
I had initially been told when I had the meeting with my oncologist that I would be knocked out for this surgery but that was not the case. Turns out it was more of a relax/twilight kind of situation and I wasn’t a fan of knowing that I was going to be awake when they cut into me.
They gave me some antibiotics, anti anxiety medicine and finally fentanyl through my IV and suddenly I no longer cared if I was going to be awake or not. I just sort of drifted for the next 20 minutes or so and then they were done. I was wheeled back to the room I started in and left to sleep it off. I was probably out for like a half an hour or so when the nurse came in and asked if I wanted to eat.
They brought me a tray with scrambled eggs, some potatoes and a small thing of raisin bran which I ate all of because I think that fentanyl might give you the munchies…
Once I ate and was a little less groggy, they came in and explained my aftercare. Bandage on the port stays on for three days but the bandaid on my neck can come off tonight. I’m allowed to shower because the bandage is supposedly waterproof but if I notice it getting wet underneath I’m just to remove it altogether. Under the bandage there is some purple glue that will start to flake off once the bandage is removed and might take a week or so to come off completely.
No lifting above ten pounds. No exercise where I move my arm over my head too much but I was told running is okay. It should take about 30 days to heal completely but I can probably start exercising with arm movement in about a week.
That was it, I was told to get dressed and I got walked out to Rob where he drove me home.
I was still quite groggy/high on the way home and promptly passed out when I got to the house.
So there we are.
It’s starting to hurt a bit now, more like a muscle soreness than anything. They didn’t give me any pain meds but I still have some from the last two procedures and I haven’t had to use them yet, Advil has been keeping things cool so far.
Tomorrow, if I’m still feeling okay I will go back to work. I will leave early for an “education” appointment at the oncologists office where they will teach me all about the chemo and then I start that next Monday. So things are really moving and shaking on this here cancer train now.
That’s really all I have on that subject.
I had a good birthday on Saturday. I wasn’t into it at first, I was having a really bad headspace day, crying most of the morning. But I headed over to Rob’s dad’s and we had our group celebration (Rob’s Bday was earlier this month, mine was Saturday and his dad’s is today). I got a lot of cancer related presents and Rob’s sister made us these amazing red velvet cupcakes and homemade ice cream that has been making me very happy ever since.
After that we headed over to my work for dinner (none of us were very hungry as we didn’t eat lunch until two) and a show. The nephews had helped us out with advertising the current show “You’re a Good Man, Charlie Brown” and so they were comped dinner and show tickets for their time. The show was great and the kids had an absolute blast though they had a hard time sitting still all that time. Josh was fanboying hard for Snoopy and then got really shy when we went to introduce them after the show but we were able to get their picture taken with him so they were really happy.
I got to see a couple of my theatre peeps I hadn’t seen in quite a while so that was nice. I was glad I didn’t bail on the day because although it was tiring and my brain wasn’t in the best space, I feel like it fortified me and made me feel loved which I kind of need right now.
Okay, that’s really all I have now. If I learn anything I feel worth documenting tomorrow at the education appointment, I might update tomorrow night, otherwise it will probably be after my first chemo session on Monday if I’m feeling up for it.
Please enjoy the following pictures of the presents my husband and my sis in law Liz and the nephews got me. Not pictured are the amazing red velvet cupcakes and homemade ice cream that my sis in law Laurie made because they are long since put away in my belly. 😀
Liz made me this chemo bag with items a friend who had recently been through it recommended.
I am a 50 something married woman living in California.
I enjoy music and traveling, watching crap movies, snuggling with my two adorable dogs and trying to be a good person.
