Blood work was scheduled for 12:30pm, and was uneventful. Easiest part of my day. My oncology appointment wasn't until 2:15pm, so my Mom and I killed sometime by hitting up the hospital cafeteria, and by that I mean Druxy's. This place makes the most magical salads ever - next to Freshii of course. Yummy! I also came prepared for this long day at my second home, by bringing reading material. Sometimes I'm such a genius it's unreal! Right now, I'm reading 'Eat, Pray, Love". Read it people. It's really good.
3:00pm: I finally get to see my oncology team. Nothing really super exciting to report there. I did get tons of compliments on my shirt!!! The woman at the front desk of the brain centre said to me: "F---Cancer? What is that?" I replied "it's exactly what it says it is, it's self explanatory!" Isn't it obvious?? Then one volunteer said: "How about fun, or fabulous?" Has this lady been drinking? Heavily? Cancer is a lot of things, but it sure isn't fun or fabulous! Oh, another funny tidbit. My chemo drugs comes with a stack of reading material, and in there it says, don't touch the chemo pills, don't handle them, wash your hands, if you've handled the pills, don't rub your eyes or touch anything. I find this absolutely hysterical. So lemme get this straight, I'm allowed to ingest it, but I am absolutely not allowed to touch the drugs, and I must wash my hands immediately. It's like car battery fluid or something. The package also says, I can't give my pills to my friends, even if they have the same symptoms as me. Sorry guys, I know you're disappointed, but no chemo drugs for you.
In both my previous cycles, I had this super weird rash. It usually appeared during day 3 or 4 of my cycle, was aggravated by heat, and disappeared about 4 or 5 days after I was done with chemo. I thought it was a chemo rash. No big deal. I was told today, however, that it was actually the anti-puke meds. So my oncologist prescribed me an anti-histamine. More drugs...I think I'm up to 35-40 a day? But who's counting. But then, get this, the anti-nausea pill that was causing my rash was discontinued, haha, hilarious.
I also tried to get my license back. First let me be clear that I would never drive if it was unsafe, and I was not at all demanding that I get my license back that day. Since my license was officially suspended, I haven't been able to get any clear answers at all. My oncology team was telling me no driving for a year, and the Ministry was saying that all I needed was a letter from my oncologist. Huh??!! Ridiculous. All I wanted was some answers, an explanation. I kept telling them that I've only had 2 seizures, pre-diagnosis. Key word here being PRE. Their answer was total bullshit. They kept telling me I have brain cancer, as if I hadn't read that memo. So I asked more questions. They told me I'm at a higher risk for seizures (ok fair, that's a given), and that I can be seizure-free for years and then have a seizure. What about epilepsy patients? Aren't they at equal risks for seizures if not more so than I am? Couldn't they go years without having a seizure, and then have one?? It doesn't make sense. After I explained what I was trying to say for 15 minutes, we decided to wait a little longer and make sure my disease stabilizes. "We will revisit the issue Sarah". Ok, fine, whatever. At least I finally had some sort of answer.
The other thing that made me angry was every time I go into that place, I get a different story about what's going on in my brain. And the truth of the matter is, they don't know. At first they told me the tumour has been fully resected, and there was cancerous activity still in the brain, and so hello chemo. Then they told me today that these types of tumours are never fully resected and there are always tumour(s) present in my brain. Well what the hell does this mean? Obviously this is some cancer dialect that I haven't learned to speak yet. Lingo aside, there is some serious lack of open dialogue going on. The only open dialogue we had was joking about my oncologist's recently acquired dry cough, which he said was due to hormonal changes. Hormonal changes??!! HAHAHAHA pal, we're just joking!! These oncologists are waaay to uptight. Try some tequila. That ought to do to the trick. Hahaha, hormal changes. That's awesome.
I also tried to get my license back. First let me be clear that I would never drive if it was unsafe, and I was not at all demanding that I get my license back that day. Since my license was officially suspended, I haven't been able to get any clear answers at all. My oncology team was telling me no driving for a year, and the Ministry was saying that all I needed was a letter from my oncologist. Huh??!! Ridiculous. All I wanted was some answers, an explanation. I kept telling them that I've only had 2 seizures, pre-diagnosis. Key word here being PRE. Their answer was total bullshit. They kept telling me I have brain cancer, as if I hadn't read that memo. So I asked more questions. They told me I'm at a higher risk for seizures (ok fair, that's a given), and that I can be seizure-free for years and then have a seizure. What about epilepsy patients? Aren't they at equal risks for seizures if not more so than I am? Couldn't they go years without having a seizure, and then have one?? It doesn't make sense. After I explained what I was trying to say for 15 minutes, we decided to wait a little longer and make sure my disease stabilizes. "We will revisit the issue Sarah". Ok, fine, whatever. At least I finally had some sort of answer.
The other thing that made me angry was every time I go into that place, I get a different story about what's going on in my brain. And the truth of the matter is, they don't know. At first they told me the tumour has been fully resected, and there was cancerous activity still in the brain, and so hello chemo. Then they told me today that these types of tumours are never fully resected and there are always tumour(s) present in my brain. Well what the hell does this mean? Obviously this is some cancer dialect that I haven't learned to speak yet. Lingo aside, there is some serious lack of open dialogue going on. The only open dialogue we had was joking about my oncologist's recently acquired dry cough, which he said was due to hormonal changes. Hormonal changes??!! HAHAHAHA pal, we're just joking!! These oncologists are waaay to uptight. Try some tequila. That ought to do to the trick. Hahaha, hormal changes. That's awesome.
I also read about the newest clinical trial. They are looking at my exact tumour type. There are three groups: 1) Radiotherapy alone, 2) Radiotherapy + chemo, and 3) Chemo alone. They are doing the study because they don't know which treatments are better. The study will take 6.5 years, and the results will be ready in 15. I was so enraged by this, I had tears in my eyes. Even though I'm not formally part of the trail, I look around the room, and half of the patients might not have 15 years. 15 years?? Are they serious??!! 15 years is precious, precious time to a cancer patient. I understand that clinical trails are a must in order to further medicine. I get it. The scary thing about cancer is that they actually just don't know. I read all the crap about the study, and all I could think about was, this is bullshit, they are gambling with people's lives. It's just a bunch of fluff, and at the end of the day, it's not good enough, and this time it's personal. And even though I'm not officially part of the trial, I have this exact tumour, and I'm taking chemo only. I am in group 3, and so they are gambling with my life. I'm 25 people. I think what if one of these people loses a loved one because they didn't get the best treatment regime? "Um yeah, so we found that radiation and chemo is the best treatment, sorry about that everyone." We're all guinea pigs. And maybe some people have different opinions about clinical trials, and I'm all for research, but it's different when it's personal.
To the last part of business. My blood counts are so so. My neutrophils and white blood cells tanked. For those of you who don't speak cancer, that basically means I don't have an immune system. I need to get myself a bubble. So my oncologist had to reduce my dose. Let's just be clear here, since they botched my weight last time I was there, they overdosed me, so that's why my levels plummeted. Such brilliance, it boggles the mind. But I got cleared for round 3...so here we go again. Then we waited for what seemed like an eternity at the hospital pharmacy. I have filled a prescription there before, twice to be exact, and it still takes 2 hours. They have like 20 people back there, and we're at Princess Margaret, the cancer mecca of the world, it's a jackpot for chemo drugs!! I have half my brain missing, and I swear to god, I could have done it faster. And by 5:30, I was finally on my way home.
I also just want to give a shout out to everyone that has been following my journey and reading my blog. I know some posts are a little on the long side! :) Thank for all the love and support. You keep me strong. Love to all. xo
