I often refrain from writing anything during chemo weeks because I am miserable and have poison running through my veins and I am worried about what I might say that I then might regret later. But I am also feeling so antsy and bored and restless in my own skin and worried that if I don’t write, my brain will just turn to complete mush from spending my days lying flat in the bathtub while watching Real Housewives.
A lot of cancer patients experience a sort of brain fog throughout their treatment, and sometimes long after. This is a very real fear of mine. My brain is pretty important to me. I’ve worked hard on making it a useful one and it has served me quite well. I don’t like the idea of becoming distracted, forgetful, unfocused. Unable to complete a task as quickly as I once could have before. I want to keep my brain sharp. I don’t want to let it down. Unfortunately, I don’t have much choice over the matter. I am exhausted and my thoughts are cloudy, at best. The idea of reading a book or even watching an intelligent movie just seems impossible at this time. Even writing a coherent email is getting to be a bit difficult, as I’m sure a couple friends can attest to who received one over the past few days. Is it the steroids? The chemo? The sleep deprivation? The fact that I sit alone most of the day with nothing to entertain me except my weird, usually morbid thoughts? I guess it’s all enough to make anyone go a little crazy. I just really hope none of this is permanent.
The feeling of wasted time has really started to weigh heavily on me. I wish that I could be using this time to do something productive, something great and meaningful. But that’s not how this works. Cancer treatment isn’t a fun vacation. At least mine isn’t. Lately I’ve started torturing myself by looking at vacation destinations online. Warm places with beaches where people are happy and not bald and not pale and not peeling and not bleeding. Last night, after a terrible few hours of being sick and weak and crying so hard I started hyperventilating and nearly fainted on my toilet, I even resorted to watching youtube videos of rides at Disney World, trying to remember the feeling of being a happy kid who just wanted to meet Mickey Mouse and didn’t even know about the word cancer. The Dumbo ride was my favourite ride when I was a wee one. All it does is go round and round and that’s about it. Do you know how badly I want to be sitting in one of those stupid elephants, flying through the air right now? You have no idea.
A couple days ago, I was looking through all the comments from this blog. A lot of times, people add comments long after I’ve made a post, so I imagine most people who just read my current posts never see these comments. But I see them all. And reading through them made me quite happy, especially all the people who don’t know me but seem to be my biggest fans, or the people who tell me I am helping them through their own illness. So I guess I have been doing something sort of productive, even though it is hard to feel that way sometimes. So thank you for giving me that and for reading and supporting.
I got some great packages in the mail yesterday including beautiful handmade cards from a bunch of kind strangers, pins, magnets, a blanket, a book. Last week I got a lovely robe from a friend of a friend that she sewed just for me and I have worn it every day since. I love these things so much. I know I keep expressing it over and over, but I want people to know that it is all so appreciated, even when I am just a big sad sack of moodiness and gloom like I am right now. Although I managed to muster up the energy to go to my mail box today and all that was there was junk mail and disability-related papers, so that was a bit of a letdown. Hopefully this means I will get double presents tomorrow. I have become super greedy with my expectations of receiving tokens in the mail. I have no shame admitting it. I have no shame admitting anything right now. Like the fact that moments ago, I attempted to sneak a candy bar from the top shelf of my cupboard by almost climbing on a chair, and then realized I would likely stumble off the chair and smash my head on the table, and the idea of dying that way after everything I have been through just seemed a bit ridiculous, so I abandoned the plan altogether.
Hey, look at that, my brain still works.
UPDATE: My mom just sent me an actual video of me on the Dumbo ride from many moons ago. I am very impressed that my parents figured out how to make a movie file from our old Beta footage. Thanks guys!
pass me another cupcake 
Steph, that video of you at Disneyworld is priceless! Also, if you are looking for more mindless reality tv I recommend RuPaul’s Drag Race if you haven’t already watched it.
High fives! You are awesome and I think about you often. I hope you are feeling more like yourself soon.
Steph keep writing ,keep angry,keep loving,keep caring,keep keeping track of all the people in your corner because my Darling you are going to have to buy 1000 thank you cards to send out to the many who love you and know you will be okay. .When you are ready to do let me know so i will take you and jacob up to a lodge north of toronto for breakfast by float plane,the pilot will be my baby son Jonathan and co pilot your uncle jack. We will pick a beautiful lodge in georgian bay to see the group of seven areas of their wonderful paintings and see the beauty that they saw and give you the meaning of life and the beauty that goes with the fight you are going through which you will win. Keep strong little one,love to you and Jacob. Uncle Jack[john]aunt Fran..
Wow you and your parents are amazing! I don t know how they got that video together but it’s just PRICELESS
Talented
Hi Steph== I don’t think that you need to worry about brain fog as your dialogue is brilliant and we all look so forward to the day when you are well, so that you too can look back and see how very bright you are even under these horrible circumstances. Thinking of you and wishing you continued courage in your difficult journey
I agree with Beth. You are one busy lady! Try not to br so hard on yourself. You are doing lots. Even when watching Real Housewives 😊you are resting your body and your mind. As much as I love it, tv doesn’t get much more mindless than that!
Keep checkin that mailbox! 📫
I love getting packages in the mail also, I think it helps be get through some of my days! Hopefully someone sends you some chocolate, so you don’t need to think about climbing chairs in the future!!!
I definitely concur with everything the other posters have written, and I agree, you seem pretty darn busy to me. But I have an idea for you with something that might provide some distraction, some play and, as you’re hoping, to keep your mind as sharp as possible. My mom is worried about Alzheimers’ disease, so she signed up for Lumosity online. It’s games, but they deal in math, remembering names, sense of direction, and lots of other things. Please know I’m not a spammer, but I tried it myself during a time when I was severely depressed, having stayed for a month in hospital to support my aunt in palliative care. (Chair-sleeping, I’m sure your hubby can attest, does not good rest make, though it’s nothing compared to your struggles. But, it was also a month of not being able to do anything but sit there, while she was not conscious, but clearly in pain.) Anyway, the games were not hugely challenging, which might be good for the bad days, but it also shows your progress (if you pay for a subscription, which also unlocks plenty of different games.) I don’t know if this is of any interest to you, but you might give it a try – there’s a limited access free version to check it out first.
Whether you check it out or not, please know that I’ve been reading your posts with interest, empathy and prayers and if you ever are ready to really make the bookworm’s dream vacation, I can share plenty of ideas and information with you…I’m one myself, mostly travel books of late. There’s an excellent light memoir called “Paris, My Sweet” which you might want to check out – it’s all about chocolate and sweet treats in Paris and Manhattan….and cupcakes have a chapter all to themselves!
I can also send chocolate…that you won’t need to climb on any chairs to obtain. Let me know…
Suz
Of course your mother found & converted this video, she is one amazing woman after all. And apparently the apple doesn’t fall far from the tree! Gotta say I wonder if your Dad would have gone for the chocolate….
All true, but it was actually her fabulous father who did the finding and editing.
Funny the juxtaposition of self impressions and how others view us. I’ve thought you very productive. Here’s a list of your accomplishments:
1. Healing your cancer. It’s full-time.
2. Studying cancer/physiology/medicine/alternative healing programs. It’s full-time, too.
3. Writing a blog, which includes taking the time to have the experience about which one’s writing, the editing, publishing, and staying current with feedback. Pretty full-time, I think.
4. Watching and analyzing daytime programming/internet sites/and other mass media that hasn’t been studied prior to your new schedule. Perhaps not quite a full-time endeavor, but surely part-time.
5, Then there’s commuting to various appointments, the time-consuming task of opening gifts and cards, and eating delights, and receiving loving messages, family chats, rubs from the hubbs.
It’s a full-time-plus packed schedule extravaganza, to us out here. And you keep it together with a pluckiness that’s wonderful, and a big-brained wit that encompasses the experience, digests it, and then composes prose so that the masses may have a taste. You’re doing great work and it matters.
wow, thank you beth for this comment! it is hard to remember all that stuff when i’m sitting around feeling like a useless log. it is hard not to be hard on myself. thanks for saying such nice things and making me tear up a bit, in a non-depressed way for once 🙂
You are not useless. You are opening my eyes to what it’s like
Love the video! A 30 minute wait for Dumbo was a pretty good deal!
oh, you always manage to make me ‘literally’ laugh out loud. The last line was not expected but hysterical. Much Love from RI!! XO
Great post! I can’t remember how I found your blog and I also couldn’t remember if I had commented on any of your funny posts. I spent some time looking to see if I had but got too bored looking. How’s that for chemo brain? Chemo brings on ADD as well. It’s that hurry up to wait syndrome. I can identify with your boredom. It’s so hard to adjust to when you actually had a life before diagnosis. Days go by so slowly and I long for 7 pm when I can take my sleeping pill so I can fall asleep and start all over tomorrow. A friend reminded me today that we had a life prior to diagnosis and we will after. It’s hard to imagine that when we feel like crap but it gives us hope and strength to keep fighting. No other way to describe this journey we are on but to say that it royally sucks. Hang in there. Keep posting because it is so helpful to people like me who can relate to your so called life. Thank you for the momentary interruption of my reality! Michele
glad to help, thank you for the comment! it is very hard to remember having a life before, for sure… but i like the idea of having one again so i will try to think about that part!
So glad to get a post from you. I figured the silence meant you were going through another bad patch, but not only is your brain still working, so is your sense of humour! You don’t know me, but I feel I know you, and care about you so much since I discovered your blog a week or two ago (and read every post from the beginning). I am a coach, and if you ever want to just unload to someone different for a change, I would feel privileged to be an ear, or just company or whatever… especially in those crappy lonely times… Just write me ( as you will have my email) and I’ll write you back with my phone number, or write you and ask for yours).. By the way, my understanding is that chemo brain goes away. You can’t keep a good brain down and yours is an exceptional one!! You are an amazing young woman and I wish you good and lasting health (with a trip to Disney World and other exotic lands thrown in) soon!
thank you so much!
I love your blog, and have so much admiration for your courage and courage with humor while you are going through chemotherapy. May God bless you and lead you quickly to better health. I laughed out loud when I read about how you opted not to stand on the chair for a candy bar 🙂
it was a hard decision, but ultimately my inability to climb the chair won over my desire for chocolate that might not have even been on the shelf. thanks for your good wishes.