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  • Writer's pictureTiffany Crowe

Is this thing still on?

Updated: Jun 14, 2021

It's been about a year and a half (530 days to be exact) since I last posted and a lot has changed since then. People have asked me why I stopped posting and to be honest, I really didn't have a good excuse but it's been really hard to find the motivation to sit and try to get this going again. I ask myself what's the point, who really cares about things I have to say, will anyone actually read this or will it be another overlooked facebook post....and many more. Then I TRY to ask myself why should I care if people read it, but I still couldn't convince myself to carve the time out of my day until now. It's 1pm on a Sunday and I am taking a break from cleaning my apartment which I have been doing for the past few hours to sit and give this a shot. My couch will feel nice to sit on for a bit :) So here it goes...

The last year and a half has consisted of many changes in my life but I guess I should start off with the most significant event which is directly related to the reason I created this blog in the first place. I was about to start my final month of oral chemo, Temodar, when I had an MRI that showed another tumor recurrence. I had my fourth (and hopefully) final surgery on my sweet sister's 30th birthday, August 18, 2017. I opted for another awake craniotomy which may sound crazy since I could have the surgery asleep, however, I was hopeful that I would be able to help out during surgery since this time I had functioning in my left hand. Unfortunately, I lost functioning during surgery (it came back after, no worries) so I guess you could say I had an awake craniotomy for fun? My idea of fun probably doesn't align with your idea of fun but hey, I think it helped recovery time. My favorite memory of this day was after surgery, I did NOT want to see anyone, my head hurt just a tad after all, but what I DID want was my pillow from home. My poor family had to be told that I didn't want to see them but that someone needed to go get my pillow for me. Sorry fam. & thanks for grabbing my pillow! Fast forward to recovery, I returned to work in October and continued my new role as Manager of Medicare Grievances & Appeals. I started this role in May 2017 and it has been a learning experience but I am so happy I made the change. I may not be the best yet, but I'm much further along than I was in May and can only improve as I continue to learn.

Anyways, back to the issue at hand, since the Temodar did not yield the results we wanted, I started a new oral chemo combination known as CCNU. This is a 6 week cycle regimen consisting of Lomustine & Procarbazine. The meds last for 10 days and require a pretty big change to my diet during the 10 days, plus some days following. When taking Procarbazine, it's important to avoid any foods that are high in tyramine which includes aged/fermented foods. Foods that fall into this category are almost all cheeses, spinach, raspberries, avocado, alcohol, picked foods, smoked foods...etc. This may not sound like a big change, but after my surgery I have been really trying to follow a ketogenic diet (high fat, low carb) in hopes that in combination with cancer treatment, the cancer cells will become more sensitive and weak, therefor dying. I think in the beginning I basically brain washed myself into thinking if I had bread/sugars then cancer cells would start growing in my head. I wish I was lying but I am not. When I was on my first cycle of chemo, I felt HORRIBLE with headache and nausea and knew bread/starchy food would make me feel better but due to my fear of carbs, it took a lot out of me to eat one piece of bread. On keto, I eat a lot of cheese, spinach, avocados, etc so when you have to avoid those things, your eating options are very limited if you think about it. Maybe it doesn't sound too bad but put yourself in my shoes for one day, trust me you will see. I have become a lot better and during chemo cycles (I'm on my 3rd cycle right now) I allow myself to eat more carbs and not-so-keto-friendly foods. Let me tell you, though, I ate some bread at a restaurant the other day and my body HATED me, so I still have to be careful and try not to yo-yo my diet too much otherwise I feel like garbage.

Due to the oral chemo and the medicine I take for nausea, my memory has been pretty shitty as of late. I'm sorry to anyone this is affecting. I may forget pieces of our conversation, I may think I have to tell you something but if I don't do it right that second then I forget, I may not respond to your text right away and if I don't, 9/10 times I forget, I forget words which is annoying in conversations...this isn't fun. I make lists at work all day long but I need to incorporate lists into my personal life - now I just have remember to start a list!

The last thing I want to include in this post is how thankful I am for all of the people who have been providing their support to me, family, friends, doctors... I couldn't imagine going through all of this without everyone around me. One person I want to call out is Lisa Scarpace. This woman is so great and is always so positive and supportive. Lisa I wouldn't know what I would do without you and this post is for you girl :) not only because you have been constantly encouraging me to post here or because thanks to you, Dr. Lee & Game On Cancer I have my own laptop to finally create this post, but just because you're the best of the best and you have the greatest heart.

Lisa Lisa My Girl

Ok just kidding, one last thing. Thanks to my aunt, I was granted a "Do It For The Love" wish. This organization provides tickets to a concert of your choice and tries to get you a personal meet & greet with the artist of your choice. I found this out late 2017 and have been waiting for my love to announce his tour. Guess what? George Ezra will be at the Royal Oak Music Theatre in April and I submitted for his concert and to meet him. This would be The. Best. Words can't explain how much I hope it works out and I am able to share with him how much his music means to me. I know I sound like a 13 year old Hanson super fan but he is incredible and "Waiting on Voyage" is always in the number 1 CD slot in my car. Send your positive vibes to me and keep your fingers crossed that I can meet him when he comes <3

I barely scraped the surface of changes over the last year & a half so I will be back soon. I have realized that writing here really does help me so I shouldn't waste my time and energy wondering if anyone cares. I care and honestly had a very hard time last summer coping with another recurrence. Maybe if I would have revisited this blog sooner, I wouldn't have gotten so much in my head and would have had a more positive experience through everything. Keeping a smile on your face only does so much, you have to figure out how to keep a smile inside and that is what I'm really working towards.


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