First of all, I've been working on this post for a month now so it might be a bit unorganized but I trust you can follow along. Everything leads back to the same point: Living with cancer freaking SUCKS (MAJOR understatement). I can't imagine a day where I don't have brain cancer consuming my life . In the documentary "Heal" , Actress Jamie Lynn Sigler suffered from lyme disease and now has MS. She said something to the effect of" I don't know a life without being sick" I cried the first time I heard it because of how powerful that statement is. To be honest... a "healthy life" freaks me out! My idea of a "Healthy life" is obviously cancer-free and not on any medications. A life where I wouldn't be nervous to make long-term plans, where I wouldn't be afraid of getting pregnant (or decide to try). Other than having brain cancer I live a pretty healthy lifestyle which includes my mental health. I try hard to manage it but still have my days, who doesn't? One day I'm laughing , the next day I could be crying or be tearful all day. I guess that's not too abnormal given the mental health issues we as a society are working to normalize. I'm no doctor but I assume anxiety and depression rates have drastically increased as a result of the pandemic. Try to make sure there are more good days than bad days. I get teary pretty much every time I'm at therapy (PT/OT). It's SO damn frustrating when you aren't able to do therapy exercises or even complete everyday tasks outside of therapy. Sometimes it's hard to decipher between happy tears and sad tears, like great.... why is Tiffany crying TODAY?? With that said, I've been having a hard time over the past month dealing with the reality of life as disabled. Even though it's been 2 years (12/9 was 2 years), I still don't feel like myself. I feel like I've lost myself and there are a lot of times that I don't even recognize myself. My left shoulder droops when I walk, my gait (walking pattern) is far from the "average person" I can only walk with my brace on and only have one pair of shoes that fit with my brace and the zipper on the left shoe is ripping, it's a daily game of russian roulette zipping that shoe and as soon as it busts off, i'm down to one right shoe. I ordered a new pair, same shoe, but different color a few weeks ago and they will finally be here this friday (UPDATE: They arrived!). If I need to dress up, my whole outfit goes to shit with the ugly shoes
I've been experiencing muscle fatigue on my right side, a side effect of chemo. I'm on a platinum based chemotherapy and my understanding is about 70-100% of patients on platinum based chemo experience many of the chemo side effects. Because of this weakness, I've been having a difficult time getting up from sitting, for example, getting off the couch and the toilet. I'm 33 years old and have to ask for help getting off the toilet which is super cool. Asking for help with that and other ADLs that I should be able to do independently such as dressing and bathing is humiliating. There are plenty of things people can do everyday that I struggle with or have to learn again.I get so hard on myself when I have a difficult time with everyday tasks . Prime examples: getting up from the toilet, getting up from the ground (I am not able to do this at all), getting dressed, putting jewelry on, etc.. I had a brilliant idea to practice getting up from the floor at my mom's with her and Greg(step-dad) right there spotting me but I ended up falling forward faster than anyone could catch me, busted my chin open and had to get stitches. I dented their floor if that tells you anything about how hard I hit. Again, this is something most people can do but I try it and eff myself all up. As a result, I had to take a break from treatment. Remember when I mentioned Avastin? That drug really slows down the healing process and puts me at a higher risk of infection. I had to take a break from treatment until my chin fully healed which took about a month. I was able to start again a few weeks ago.
One of the most difficult things about my cancer journey is moving from being 100% independent to now only about 50-60% independent. I’m very grateful that number isn’t 0 and I know it could be worse (I’m allowed to say that to myself but you aren't allowed to say it to me ). I still don’t feel comfortable staying overnight by myself, I have nighttime braces for my hand and foot that really require 2 hands to put on. If Todd travels for work I have to stay with my mom and Greg. I still ask for help with some things through out the day after trying to do it myself but I'm guilty of asking even if I can do it myself but it would take me a while. Sometimes it’s more efficient to just ask for help...for example it takes me about 20 minutes in the morning to get out of bed, get dressed and put on my brace. I don't know if i'll ever go back to work it’s really not feasible at this time for many reasons. My time for PT & OT would be very limited or non-existent, I typically have doctor appointments (weekly or bi-weekly) and hours of treatment on Fridays every other week.
I've definitely had to improve my level of patience. Sometimes I have to go back and forth for what feels like a million times. This morning I was cleaning off the coffee table and there were 3 things that needed to go to the kitchen, I had to take one thing at a time so I had to go back and forth, back and forth. At least I'm getting my steps in I guess. I should pull a bag out so I can transport multiple things in the bag rather than having to go back and forth. My point is, my patience has gotten better for things I can't control because I was forced to improve my patience for myself. I'm actually still getting adjusted to the fact that things take me longer to do, I need to remember to allow myself more time to get ready...it doesn't just take me an hour anymore, but like 12. lol it’s a good thing I’m not much of a makeup person so that saves time
Remember: try your best to be sure there are more good days than bad days. Try to have patience with yourself and with others (especially with others because you never know what someone is carrying that day). Try not to feel bad when you ask for help – it’s okay! Try to laugh loudly and even cry loudly … just because it helps sometimes. And… last… always make sure you have lots of pillows on the floor when practicing new exercises or therapies to avoid that trip to the ER.