Before I left on my trip my brain was swollen. I still begged my doctors to to let me go on a safe trip with good healthcare. She was hesitant and asked me to bring steroids for brain swelling - just in case. I was starting my new at-home chemo pills (Xeloda & Tykerb) when I got home. When I’m scared about something - adjusting to a new treatment, a new dose, recovery, surgeries - I like to do something big.
Jeff and I ended up going to Mexico and *sigh*. Can someone leave me there next time? Drinks, food, sun, books, swimming. Room service, swim out rooms, cheesy beach photo sesh. This time, Jeff and I chose to have no schedules. If we didn’t want to go for breakfast we ordered in. We didn’t rush to the beach at 8AM. We watched movies, took naps, and ate a ton of ice cream. I lucked out. No steroids needed. My brain was behaving! It made my winter bearable. I wasn’t sad or depressed this year. I can’t believe I’m saying that about Winter, it’s been so many years.
Unfortunately once I came home, I started my new chemotherapy. I was really sick. I was throwing up, my stomach felt like exploding. I couldn’t eat. One day, I woke up in the middle of the night and blacked out: I fell - hard - onto the ground on my broken arm, right side. Jeff ran to me, I had no memory. I was sure my arm was broken. I couldn’t feel my hand and foot. I rushed to emergency only to find out - all along - the swelling in my brain was taking over. They put me on steroids (what’s sleep? Why am I always angry? I make anal retentive lists for Jeff and he just.. puts up with it. I never, ever say sorry. I am always right!!!). While I have PTSD now when I hear I have to be on them, they’re a necessary evil. I felt better in three days. I can only shuffle on my right foot. I’m painfully slow. At the hospital yesterday, I got asked if I was okay repeatedly. Here I am though, able to move around, even if if I need some help when it gets too steep, putting on my boots and getting into the shower. Snuggles with Mav are always welcomed though - to say we spend a lot of time together is an understatement!
When I treated my brain, the chemo nausea was gone right away. That’s when I was able to look at my true side effects and took notice; I lost my sense of smell and taste! My doctor acted like it was not a big side effect in the big picture but.. but. I love to eat!!! This is greatly affecting my quality of life!!
The stomach and gastro problems are less with a lowered dose of chemo, with some chance of these weird side effects to lessen or disappear. At this point, I’m so confused with my body. Who knows what it’s caused from - my brain? The chemo? Your guess is as good as mine.
I waited a while after this emergency visit, to let my brain surgeon, chemo oncologist, and brain radiation doctor chat.
This morning, I had an appointment with my brain surgeon.
I love when a doctor is confident and has a plan, so although I’m nervous and scared I’m relieved.
He told me that I was an emergency case. I had a lot of swelling. The good news was, the second he takes it out the cause of the swelling is gone. I should have immediate relief.
Since it’s an emergency I go in TUESDAY. As in, 5 days from now. He wanted me tomorrow but they’ll be closed for Easter! So happy weekend to me (and please, oh please, let me enjoy my cheesy broccoli without my full taste).
Even though I’m admitted Tuesday, it could take place that day, Wednesday or Thursday. It is based on if anyone with a bigger “emergency” comes in to tend to. For now, I feel ok. I like that I have a timeline and it makes the potential of waiting less frustrating.
This time I’ll be more prepared. Snacks (although I’m starting to like hospital food *facepalm*), my own pajamas, pillows, toothbrush, downloaded Netflix (did you know it’s banned at the hospital?).
Side note : THEY GOT ONE OF THOSE AUTOMATIC ICE CREAM MACHINES! Looking for the little silver linings because...
I’m gonna be awake this time. I have a friend that did her whole surgery awake, and she said although it was long they keep you drugged enough that it feels like no time has gone by. My surgeon (whom I love and trust), said that to make sure I don’t lose function and mobility he will let me listen to music, ask me questions, make sure my hands and feet are responsive. So even though it feels daunting - I feel calm. I’m not nervous, which is shocking. Maybe I knew it was coming since my trip, so I had time to think about it.
When I have the surgery, I’ll stay in the hospital for 3-5 days.
There’s one thing I should mention. My surgeon was the first person to confirm that my new chemo crosses to the brain. I had heard this, although no one had ever confirmed it. He was really hopeful and wants to do an MRI before I even go in because if it’s shrunk, he doesn’t want do the surgery at all. This is VERY optimistic thinking. I’m making this comment but NOT hopeful. I can say I “completed” six weeks, but in reality I haven’t been able to take a full week without a break. I don’t think I’ve consumed enough to see a difference, working or not.
Since my trip I got to see Ariana Grande in Montreal (had to save my energy for that one!), but sadly had to miss My Favourite Murder live podcast and a trip to Toronto to see the Dear Evan musical with my sister. The end of Winter and the beginning of Spring has been a challenging, weird season for me.
When you order your fave and it end up being gross AF with your new tastebuds
I should also say - because right now I’m treating it as a future Sam problem - I have two spots in the back of my brain where they’ve already radiated. He said I don’t have much “retail space” left back there so he can’t remove it without doing more damage. So, hopefully.. this next chemo works! There isn’t a lot of options otherwise. One thing at a time though. I’m choosing not to think about it yet.
Right now I’m passing all this time..
- Binging books. Currently reading “Becoming” by Michelle Obama.
- TV (duh). Killing Eve, The Voice, MTV, my guilty pleasure - Star. All the good shows, you know?
- Scrapbooking. I realized recently I was thinking a lot about what people wanted from me and it was crippling. My therapist asked me what makes me turn off and forget about the world around me. I love sharing, so I likely will with this hobby, but I also don’t care if one page takes me four hours. Or if my edges aren’t cut straight. I’m an 80% > 100% girl anyways. This is my time to listen to music and create something for me.
I think a lot of the time about what I’ll leave or do for others, and I quickly realized that not only was the pressure stressing me out, that isn’t the point for me. I have all of this unexpected time to use to focus on me - weird questions like why I’m here, why do things happen the way they do... and also why is Adam Levine still on The Voice?
So having some me time to contemplate is very important.
Anyways! I hope everyone gets to enjoy their Holidays in their own little way. Whether it’s Beyoncé’s new Netflix doc, working to the bone in retail to make sure others enjoy their day, or a family dinner celebrating at home. Every holiday is special to me now.
Thank you for reading and all of your love in advance! Is it presumptuous of me to say that? Ah well.
See you on the other side!!
Sam
(I have no idea where these are from so if you know.. link me so I can give credit!!)
