Tomorrow is the day when the real world starts up for me again. I have class tomorrow night and then work is supposed to start back up again on Wednesday. I know previously I’ve said I’m so excited for some sort of normalcy, that I want to get back into doing things that all normal people do, work and school. Truth is, I’m petrified to start a normal routine again. My chemo brain is still as bad as ever, and now with the added side effects of the Tamoxifen, I’m just afraid I’m not ready to dive back in head first, and I am truly diving back in. To take it all back before my panic set in, a few days after radiation ended I went to see my oncologist and I got the a-ok to start the new mediation the Tamoxifen. She told me to start taking it every other day for a week to see how I handle it and then if all was good to start taking it everyday. Not only am I not doing ok, the moments leading up to taking the Tamoxifen were not great either. I fought it with every bone in my body. Constantly asking the doctor if I REALLY need to take it. LIKE ARE YOU SURE?!?! Can’t we reconsider? Then instead of taking it the next day like I should have, I waited because I really couldn’t get myself to start taking this medication, the medicine I was going to have to pop into my stupid mouth for the next five stupid years every stupid morning. As you can see, I’m not a happy camper. I also feel crazy, so if this sounds like the drunk ramblings of an old man who lives at the bar down the block, I apologize in advance. Typing this out on the computer is making me realize how hard the next few weeks are going to be.
Anyway, I’ve heard so many different things about the side effects of Tamoxifen and since I didn’t fair well on the Exmestane this was my next option. I’ve heard some people have severe mood swings on this, which I’m not surprised about considering that this all fucks with your hormones. But don’t worry guys, there’s ANOTHER medication to help with that. Legit my worst nightmare to constantly take medicine to fix side effects, sounds actually stupid. I’ve also heard that you get tired, as if I’m not tired from everything else. So far I haven’t had these but I’ve had this strange foggy feeling that I can’t shake. I just don’t feel right. I am also a little more emotional than usual, for example last night I was finishing up the Handmaid’s Tale (since I finished all of Netflix I had to switch over to Hulu) and I was on the last episode. Now don’t get me wrong the Handmaid’s Tale is NOT an uplifting show, and it is totally not what I was expecting but it’s great but I have watched every single episode without shedding one tear and boom last episode and at parts I definitely wouldn’t have cried at a week ago, I was sobbing, hard ugly tears. So that was a sign that something was off, but listen I can handle some uncontrollable waterworks, but feeling like I’m constantly living a real-life video game or walking around a little drunk is definitely not something I’m ok dealing with forever. I called my doctor today just to see and they told me to just to stick it out for a few more weeks but still continue taking it every other day and just see how that goes. So, we’re left at TBD for now. I’ll do my best to try and continue to update you all with how my adventures are going, everything just feels so off lately it’s been difficult. But who knows, I’m going to be back IN classes tomorrow so you actually might be getting three new posts a week!
Today I went to my new physical therapist, who I really like and I not only got some physical therapy but also an actual therapy session. She deals with so many cancer patients that she could probably become a doctor, but she was letting me know that now that treatments are over this is usually the time that it hits people. That it actual settles in and you kind of realize what you went through. She’s not wrong. I knew it was coming but I didn’t really know when and it’s not that I’m this huge horrible WOE IS ME mess but I definitely sit and think once in a while and go SHIT that sucked. But truth be told, it really doesn’t feel like it happened to me. It’s almost impossible to sit back and think about four months ago or what it actually really felt like doing chemo or surgery, it feels like it almost happened to a long-lost sister who told me in incredible detail what it was like, but it doesn’t feel like it happened to me. I’m not sure if one day it will all hit me hard at once and I’ll have a mental breakdown and explode or maybe if it will happen in pieces but I know it’s coming and I’m going to need to have that long two-day cry session in the dark. I hope just as much as you that you’re all not around for that moment. I do feel different though, this whole experience has changed me. It’s hard to pinpoint exactly what though, like am I nicer? Meaner? Harder? Stronger? I’m truly not sure, I just know that I’m not the same person I was pre-cancer, or the girl sitting in the chemo chair, or even the girl who was laying on the radiation table. I’m different, I feel different. I barely even remember who I was before all of this happened. Maybe I’m just more aware that everything can change in an instant, and you truly don’t know how good you have it until shit sucks. I guess that’s not a terrible thing to get out of this whole experience. Don’t get me wrong, I’m not that person who’s like LIVE IN THE MOMENT, LIVE EACH DAY LIKE IT’S YOUR LAST, cause I didn’t almost die, I don’t think I’m about to (fingers crossed) but I think I do appreciate the good times more than I used to.
Something else I discussed with my physical therapist today was this weird point I’ve reached where it’s like, oh now what… Like I know I’m clearly supposed to jump back into some normalcy but besides for my fears of not being able to keep my head above water there’s this other irrational fear that I don’t think anyone is truly going to understand so I’ll try to explain it to the best of my ability, so here it goes. Since May, I have had weekly doctor visits to make sure the cancer is here, gone, boom done. And every week someone has somehow “checked in” on the cancer, felt it looked at it, listened to my side effects, whatever it may have been, there was a doctor in front of me, every week for the past 9 months. Now, my appointments are pushed to every month and even on those days I don’t always see my doctor. And as good as that sounds, it’s scary. I want them to take more tests, every day I wonder why they don’t want to take another CAT scan, or a bone scan cause really HOW DO YOU KNOW IF YOU DON’T SEE ME ALL THE TIME. How do we know it hasn’t spread or moved or the radiation messed me up or my arms are going to fall off or my head is going to fall off? WE DON’T KNOW IF YOU’RE NOT CHECKING ME! It sounds crazy but I feel safer in a hospital, which I think is the other reason I’m so excited to get my next surgery because I’ll be there for 3+ days, which sounds like it would suck but at least I’m there if something goes wrong, or if I feel a weird pain there’s someone to immediately tell. I know I’m not alone in this feeling, so many other people I’ve talked to feel the same way, like even as much as someone can sit there and tell you you’re fine, it’s just an uneasy feeling of NOW WHAT, YOU LEAVE ME? I just don’t feel safe not doing something about it, like I know it’s gone and I’m now taking this Tamoxifen, but I feel like why aren’t we doing more, why aren’t we taking more tests just to quadruple confirm that it’s nowhere else. I constantly hear horror stories like down the road, five years from now, boom someone has lung cancer or brain cancer or bone cancer. They always find it by weird chances again too; I had a cough that lasted over a month went in, had lung cancer, or I had a headache and boom brain cancer. So now what, I’m going to panic every time I cough? I think this is going to hit me harder than the actual how realization of everything I went through. I need a comfort blanket, and since my hair isn’t long enough yet, I still want my doctors to constantly tell me that “they’re doing everything they can.”
I promise I’ll try and update more, since I have to sit in front of a computer screen to pretend to do my homework I’m sure there will be more coming your way. It might have to be about normal life though since I am DONE with the “tough” part of treatment. Not that any of this was easy, although no one ever told me it would be.
As if I didn’t ask you people for enough, read my blog! DONATE! I am so demanding. Just kidding, and to those of you who didn’t know the Avon 39 is no longer happening, they have decided to do some other fundraising events next year, I wonder why. It’s also very disappointing that my donation page is gone from there forever so I can’t even look back to just marvel at the amount of generosity I received from all of you. Looks like I’ll have to start over in 2018 which leads me to…CYCLE FOR SURVIVAL. On March 3rd, me and some incredible people will be spinning to fight cancer. They’re teaming up with Memorial Sloan Kettering to raise money for rare cancers. I’m on a team with five other amazing people who have also been deeply affected by cancer and we’d like YOUR help to fight with us. Our goal is to get to $3,000 collectively so we can get a third bike to spin our hearts out even harder to fight this battle. I know you’re all asking WHEN WILL SHE STOP ASKING FOR MONEY, but I can’t and won’t stop until we beat this awful disease together. Any donation helps, maybe skip your morning Starbucks and donate the $6.50 you’d normal spend on your venti skinny caramel latte! It won’t hurt, I promise. Thank you to all those who have already donated and thank you again to everyone who donated to me before. If you weren’t able to donate last time, here’s your chance. The link to donate to me is here, and the link to donate to our team as a whole is here. Any donation helps!
I’ll be back soon, I promise.
Xx
Kim