On Wednesday June 13th I started the drug, Taxol, which is the drug I will be taking for my four final cycles of chemotherapy. With AC, my appointments started at 8:45am, and sometimes I’d be out of there before 11am. Nice and short! This time however, the administration of Taxol is significantly longer. In the first administration specifically, it can take even longer. The reason the drug takes longer to administer is because there is a chance people can have an acute allergic reaction to the drug, as the body tries to reject it. Because of this, I had to have two injections of steroids to help my body cope with the Taxol (described by the nurse as “the steroids tell your body that the soldiers coming in are good soldiers, not bad, and to leave them alone” – layman terms are necessary sometimes), along with an injection of Benadryl to hopefully ward off any allergic reaction. When I was given the steroids I felt like my eyes were WIDE open all of a sudden. It gave me a serious boost in my awareness. I probably was crazy eyed for a while until the Benadryl hit and my body was probably like “WTF?! Are we awake or asleep?! Figure it out!”. The Benadryl made me very drowsy although for some reason the steroids gave me restless feet so I’d be dozing off and every 10 seconds my left food would spaz and I’d be alert again. It was a confusing 45 minutes of all of this, you can imagine.
Even after the steroids AND the Benadryl, the Taxol drug still had to put in my body extremely slowly, due to risk of reaction, so the drip can take about 4 hours. I arrived at the hospital at 11am and didn’t escape out of there until after 6pm – LONG DAY! Thankfully, I had no reaction to the drug so after about 10-15 minutes I was in the clear, thank goodness (mini victory!). If I had reacted to the drug, they would have had to flush me out and then start over with more Benadryl and an even slower drip. So you can imagine how much longer my day could have been! Since the day was so long though, I unfortunately had to make multiple trips to the bathroom, so me and that darn pole became quite close friends by the end of it. At one point there was a line for the one bathroom so I walked myself and the pole to the next one, only to find a longer line, so I doubled back. You can't walk fast with the pole (although that would be quite a hilarious sight), so it took me forever. I'll be SO glad to be rid of that pole once and for all!
I was SO relieved to not have the Red Devil this time. When the Red Devil would go in, I would start feeling the hangover feels almost immediately – dazed and confused and just straight up blah. This time with the Taxol, I felt fine. I went home and continued to feel fine and even had a great sleep met with another “good” feeling day. I wasn’t expecting the “good” feeling to last, but it’s nice to not feel so shitty right away! With Taxol, I’m expected to feel some joint and muscle pain along with tingling/numbness in my fingers and toes. Additionally, I still have to take my shot of Neulasta (to boost my white blood cell count), so that can add to the body pain unfortunately.
While AC side effects were crappy, they were also manageable to deal with, likely because I’ve had many (too many) hangovers in my life that I have pretty much mastered the art of it. I can’t say I’ve been viciously beat up before though, so handling body pain is likely not my forté. Maybe someone who does pro wrestling or boxing would be able to master Taxol. I have T3’s to use in case it gets bad, but taking those comes with a whole slew of other issues, so I’d rather not have to resort to that. It’s nice to know they are available though!
Day 2 went well with minimal side effects other than a consistent headache which seemed to follow me everywhere. I felt slightly tired but otherwise totally fine. A day like that gives me this useless hope of “I will defy the odds!!!!”, unfortunately that never seems to be the case, but it’s a nice thought at the time. Later that night I felt some discomfort but very mild, although the weirdest feeling I got was pain in my fingernails. Yes, you read that right – fingernails. My thumbs and pointer fingers were really sore, almost as though I had accidently dropped a heavy object on them. My fingers themselves also felt sore too – the feeling you get when you’re trying to open a bottle of beer that you later find out is not a twist off, so now your poor hand and fingers are burning. Ps. It is strictly a coincidence that I keep using drinking references to create analogies. They just fit so well and let’s be real – we can all relate.
Day 3 was a progression of the body pain. I got the full body bruise feeling I had with the prior 4 rounds which is related to the Neulasta shot. It basically feels like my skin is bruised, so touching my chest, arms, legs, back, anything really – feels like a bruise. Unfortunately this means that hugs hurt! Which is a bummer because I love hugs. Later into the day though I was feeling the other body pain. All of a sudden I was getting aching pain everywhere (knees, torso, arms, back, hips, etc, etc.). The best way I have described it to people is this; you know when you go travelling, let’s so you go to Europe, and you spend the WHOLE day walking everywhere, sight-seeing, going up and down stairs, carrying bags if you went shopping – The whole sha-bang. Then you get back to your hotel and you just CRASH. You’re whole body aches. That is pretty much what it feels like, except it has lasted for 3+ days straight. Thankfully I haven’t had to resort to my T3’s yet, but I have been taking quite a lot of extra strength Tylenol. I’ve been taking them every 4 hours and once it gets to about 3.5 hours, I can feel the pain creep back in. It sounds terrible, but it’s been manageable. Like yes, it totally sucks, but am I going to wallow about it and not get out and seize the day for 4-5 days straight – absolutely not.
I was incredibly thankful that on Saturday (Day 4) I was in good enough shape to go to a close friend’s wedding. I was so worried that Day 4 was going to be even worse than Day 3 (which it was, but not so much worse that I wasn’t able to go!). To think there was a chance I’d have to stay back and have a depressing day in bed while missing such an important/fun day. No thank you!!!
When I was getting dressed and ready for the wedding I was noticing that my eyebrows and eyelashes have become much less full – proving that they really are falling out. I was hoping I’d get off easy on that one. I feel like at this point I could probably count the eye lashes and eyebrow hairs that are remaining. Thank goodness for eyebrow pencils and powder – what a life saver! That part is easy. The not-so easy part is the eye lashes. As much as I truly did feel beautiful once I put my dress on, my make-up and my wig, it still wasn’t “me”. It’s hard to look at pictures of myself and see a different person staring back at me. There are so many different definitions of “beautiful”. I feel beautiful simply when I am “me”, although that thought hadn’t occurred to me until now. Just the ability to even recognize myself when I look in the mirror or when I see a photo. Perhaps I now need to get used to a new “me” and the old “me” isn’t coming back. What a thought. A sad thought – for now anyways.
While I was really excited to be able to go to the wedding, I was also nervous. It would be my first event with my friends where we’d all be together, dressed up, excited, and I’d be held back with not feeling well, not being myself, and not being able to drink and participate in the fun. Coming from being someone who is always deep into the fun, it is extremely hard to coach myself through situations like this. It hurts my soul to be held back. It’s so unnatural to me and while I know this is all just “temporary”, it has been such a hard concept for me to overcome. As the night goes on I continue to be sober and I feel my body ache while everyone around me is on a different level, a fun level. Halfway through dinner Mark took his dress shoes off and replaced them with some bright pink flip flops he found. He proceeded to wear them for the remainder of the night – he definitely keeps my laughing at a constant level which I am very thankful for – minus the fact that my boyfriend is wearing pink flip flops with a black suit.
On days like Saturday, it takes all my effort to even keep up a conversation or to stand for an extended period of time. And forget about the dance floor – It made me exhausted just to watch everyone dancing (soul crushing! The dance floor is my favourite). For anyone who knows me, you would understand how desperately I need to be right in the thick of it ripping the Dfloor! Despite all of this looming in the back of my mind though, I was truly so thankful that I could be a part of the celebrating that day! Regardless of the effort involved that day for me to be there, I would never have had it any other way. By the end of the night my mouth hurt because I was smiling and laughing so much! Safe to say I had “Cancer Diana” fun. I’m hoping that when all of this is said and done I can actually get back to having some “Diana” fun.
Today is Day 6 and I’m still feeling pretty exhausted. It’s crazy the power headaches can have over your entire being! They inhibit you from thinking, they demotivate you, and they cloud over any enjoyment you might be having. I’ve been trying to fight through them, but it’s hard when day after day they have a constant presence. I’m PRAYING that things turn around for me this week. I would just love to get back out on my bike and take a long ride down by the waterfront. My 7 wonderful days of feeling good during the first four rounds of chemo were what got me through. I would be heartbroken if I don’t get any good days for these next 4 rounds. It’ll certainly be a LONG 8 weeks to get through if that is the case. Here’s to hoping!
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