Woooahhhhhhh, I'm Half-way there! Quick, cue the Bon Jovi!
Woah, I am half way there!
Being half way done with my chemo treatments was the highlight of my week - I am so glad I am here. It's been a long slog so far, and knowing that with each week that passes the number of treatments I have left grows smaller than the number of treatments I have had makes my heart feel lighter. My officemate Brian R. would definitely be singing "Livin' on a Prayer" with me right now if we still worked together. Last week I couldn't stop thinking about all the nights of making phone calls to students when we would belt out that song back in our days in the PLU admission office.
It's been a while since I posted last and I apologize that I haven't given an update since I switched meds. Unfortunately the new med has been tougher on me than I had hoped and it's brought a lot of "fun" into my life lately. To be honest, it's put me on the struggle bus recently and I needed to process some stuff before writing about it.
The "fun" this drug has brought include a feeling of sea sickness/nausea, body and joint pain, lifting finger nails, and neuropathy. Of all of these things, I was surprised when neuropathy showed up in my my hands and feet on the first day of treatment. My doctor said told me to keep him updated about this side effect because he doesn't want chemo to mame me (!!). He then proceeded to say if the neuropathy continues and worsens my treatments would need to be cut short. This is because they don't want my extremities to become permanently numb making me unable to use my hands for things like buttoning shirts, grasping things, etc. YIKES! We're talking permanent damage already?! Dang. That's fun.
To combat the neuropathy I have been icing my hands and feet at each weekly treatment. I read that icing your hands and feet can help to reducing nerve damage to hands and feet. So I figured why not add this to my icing process? It wouldn't be too much more work, Tim was up for it, and it could help me stave off this really bad side effect if it worked. I imagined myself putting on some mittens and booties, kicking back, watching Friends or a baseball game for about 2 hours, all while Tim feeds me truffles. Just kidding about the truffle part... but he did feed me apples last week. Definitely deserves the Husband's lifetime achievement award because he's so awesome normally, and has been awesomely awesome as a caregiver through all of this.
Unfortunately Paclitaxel makes me extremely sensitive to hot and cold things. So it turns out that wearing the mittens and socks feels like I am touching a hot stovetop and walking on lava at times. I keep my hands and feet iced as long as I can and then take my hands and feet out occasionally to warm up for a hot second or to take a drink of water. I am also wearing light gloves and socks to add a layer of protection from the cold packs and to lessen the pain a bit. So thank you for all the fun socks I have been getting, I am putting them to good use! The layers and taking off the boots and mittens feels risky, so I try not to leave them off the ice for too long. So far, the neuropathy has not increased since my first dose - so that's a win and maybe my compromise is working.
The hair is thin but hanging in there, but it's all about hats and bandanas right now. Thank you for the awesome bandanas! I am thankful that I can still pretend that I am not going through chemo when I walk out the door even though my hairline has shifted. The eyebrows and eyelashes are getting thinner... so stay tuned... they may go on a permanent vacation here pretty soon.
Going into this adventure, I thought the medical field knew a lot about breast cancer and its treatment options. I've been told my cancer is "very treatable" and we can "beat it" because of the advances we have made in terms of therapies and understanding the makeup of the tumors. But a lot of these advances have come in the last twenty years which means there isn't a lot of information about long term patient outcomes, especially on younger people. Lately, I have been feeling like there are a lot of of decisions I have to make this year that are decisions between "bad or worse" options (surgeries, medications, nutrition and exercise). And due to the lack of information available for long term outcomes, I feel like I am jumping out of an airplane without a parachute when making these decisions.
Amid all of this "Fun" that I have been having I am also not feeling like myself. I love to exercise for stress relief but between fatigue and persistent body aches I don't get to do this very much. Additionally, when I look in the mirror I don't look like myself - there are scars, there is less hair, there are dark circles around my eyes, there is weight gain. Hello body image issues! I'd like to think that all of this is reversible once chemo is done - but surgeries and medications mean that it might not be reversible or at least the struggle to get back to my old self will be more of an uphill battle that it has been before. This feels shallow to be writing about, but it's where I am at right now.
Thank you for your calls, texts, notes and happy things you have sent my way. They do really brighten my days and I feel your care here in Texas! Many of you have asked about things I need, and really I just need laughs, good things to read, photos of nature, and cards or notes to let me know you're thinking of me. You're welcome to add to my fun sock or bandana collection if you want - I have a grey, a green, and a yellow bandanas currently. Any fun and sassy sock are always wonderful!
If you'd like to chat, I'd love to talk about what you have been up to or other things going on in the world around us. Those are the things that help take the focus off of the pile of "fun" that I have in my life right now. Questions like "what are you up to today?" or "what's new with you?" are nice and open ended. They allow me to approach the conversation from a more general place making the conversation feel more welcoming and less emotionally dangerous to me. Unplanned zoom or FaceTime calls are tough for me because I just don't like the way I look at the moment. But if you want to put something on the calendar that gives me a chance to put on some makeup, a bandana, and feel a bit like myself before we talk.
Thanks for hearing me out! I'll write again soon!
Best,
Nicole
