I can’t believe I haven’t written in more than a month. True, the holidays were here and that consumed what very little extra bandwidth I possessed to be anything other than The Cancer Patient. Though it was a complete challenge many days, I did survive the holidays and the sometimes endless requirements (decorating, socializing, presents, worship) because it’s important to me that normal be our norm, as much as is possible.
My hair is completely gone. What we shaved down on Thanksgiving day (about 1/4″ of buzz) dropped out within a week. I stepped into the shower, made a pretense of shampooing my head, and as my hands passed over my skull, hair sloughed off into my palms like it was never attached. It was sad, and scary and dramatic, and Steve and Samantha are my saints for putting up with my angst during those couple of weeks.
I was right, by the way. One of the biggest concerns I had with losing my hair was that with an absence of hair, and the inability to make peace with a wig, I would stand out in a way that makes people wonder what’s wrong with me. I bought a small ton of beanies in different colors to coordinate with my clothes and they are comfortable and kinda cute, but there is no doubt that I have no hair beneath them.
Here’s what I’ve discovered about being hair-free:
1. My bare skull is cold, cold, cold. Except when I’m having my hourly hot flash. (Because the chemo I’m given puts me into early menopause. Hence the hot flashes and other unpleasantries.)
2. I would never, repeat never, take off and expose my bare head in public. It feels incredibly intimate and vulnerable to me, like being completely naked in a crowd. So my new biggest fear is that a strong wind will rip off my beanie in public and I’ll be naked for all to see. I carry an extra with me just in case.
So, what about the wig? Yep. The Wig. I know many women who happily wore a wig throughout their treatments. I envy them. I bought a great wig from a great shop, had it styled before I left there, came home and could not make it work. I’m one of these women who uses cosmetics not to fake or hide something on my appearance, but to enhance what’s there. The wig makes me feel artificial. It’s not real, so it’s not me. I mostly bought it for the few times I will be in front of an audience for work-related things, thinking that it would make me more comfortable and therefore make me a better presenter. But the fact is that most of the time, when I’m wearing my beanies, I completely forget I have them on. I just live my life. And it’s the same with public events.
I have to admit to feeling a little pride in owning my head. Having cancer is not my fault. It’s not a point of shame or guilt. Losing my hair is part of what I have to do to get completely healthy and while I choose not to show it to the world, I’m not embarrassed by it. (I should say the same thing about gaining weight from the steroids, but I am embarrassed by that.)
This week, I started a new chemo drug. My protocol is 4 treatments of AC every other week for 8 weeks total, and then 12 treatments of Taxol, once a week for 12 weeks. I’m on week 1 of Taxol. I hate it. The AC was hard enough. For a few days it was really hard. My last treatment on Dec. 27 knocked me on my ass for five days. I was nauseous all of the time and dizzy and grateful I didn’t have to work. But I knew it was only four treatments, with a week’s rest in-between.
When I finished the last one, I begged my doctor to give me an extra week before starting the Taxol. He said it wouldn’t be a problem. That week was so important to me. I was starting to feel like I was going to quit this whole thing, that I couldn’t take one more jab and stab. I started to feel normal again (because on chemo you’re really not ever normal until you’ve been off the drips for a few weeks is what I’m finding out), and girded my chemo port for the next assault.
So I love my nurses. I can’t say enough kind things about them. Ms. G. is too funny though. Her favorite descriptor for how Taxol would be was “tolerable.” Okay, so what the hell does “tolerable” mean? I couldn’t get her to give it to me straight. Me, a trained inquisitor, could not get her to budge from “tolerable.” I was getting worried. So I dug up a friend who is also an oncology nurse and asked her for the exact translation of “tolerable.” Her answer was that there may be some nausea and similar responses to the AC, but that it shouldn’t knock me flat. What I do have to watch for is neuropathy–numbness–in my hands and feet. Oh, goody. Since the chemo drugs accumulate in your system while you’re still taking them, these symptoms increase with time. Besides the Taxol, I received Benadryl, Zantac, Prednisone and fluids. It was another 3+ hour infusion. I slept through most of it, thank you very much Benadryl, and crawled home to sleep more. Until the night came and the steroids hit. Bye, bye sleep! But I got through the first couple of days without an issue.
Yesterday it hit. I was incredibly tired, partly from having a crazy work schedule this week, and I started getting leg spasms and nausea, but in a different way from the AC. With the AC I was queasy, but never felt like I would actually throw up. (I know, sounds weird.) The Taxol makes me want to chuck. And the spasms and twinges and sharp jabs throughout my body just make me feel like I’m battling tiny internal soldiers.
I hate this. I hate feeling sick. I’m tired of being sick. I’ve indulged in at least two crying jags in the last 24 hours because I’m pissed I still have 11 more weeks to do this. Yes. I know I can get through it. But I don’t want to. I want to feel normal and healthy. I want my frigging hair back! For that matter, I’d like my boobs back as well. And I want to stop swelling up like a blimp from the steroids. I can’t imagine what it’s like to be on constant chemo, as many people are. I feel so bad for these patients. I know I’m blessed by being mostly healthy and mostly able to lead a normal life. There are so many who are not in that position. But still, it sucks.
Tomorrow I’m going to Road to California. It’s our major regional quilt show and I haven’t been able to get there for two years. I will see lots of people I like and love and it will be fun. But I know my beanie-head will stick out and I will field a lot of questions and looks. I’m prepared. I will survive it.
These days the biggest gift I get is when I see someone and they don’t ask how I feel. I know that sounds snarky. It’s not meant to. I DO appreciate when people ask after me and I really don’t mind it. But I am so much more than this cancer. I am leading a full, rich life, despite cancer, and there are so many more interesting things to talk about than my nausea, treatment plan, upcoming surgery and anything else related to tumors and boobs. Yeah, cancer gets in the way a lot. I have to set limits on my activity and energy because of it. But mostly, life moves forward for my family and me and it’s a good thing.
I am not my cancer.
Sending love and prayers. Enjoy Road to California you deserve a good quilt show.
Wow Jake! This is all such a pisser for you. Wish I could take some of it over, so you could just be Jake for awhile. Glad you’re going to Road tomorrow. And the C & C bus is a nice safe place to just hang out with friends. Happy you’re making progress with the treatments, which is a step in the right direction.
Thanks for keeping us in the loop! Hugs and prayers! 🙏🏻
Love you…love you!
I wish you were not having to go thru this too. But you are an inspiration to all with your straight forward testimony and the way you continue to live your life thru all this hell thrust upon you. I admire your strength and candor and will continue to lift you in prayer and follow your journey. When it’s warmer and if you still need them, I make some awesome “do rags” for my friends. God bless and keep you.
Stay strong, cry when you need to and find ways to make yourself laugh because it’s good for you. And know that many of us are sending you daily best wishes and hopes for a speedy recovery (although I imagine you might have already given up on the “speedy” part because of what you’ve already gone through).
Thank you for the peek into the cancer world, and for keeping us up to date. Informative, and also revealing of a world that I know little about, thank God. Stay strong.
I want to fix everything you talk about. I want to somehow make it all better. But I can’t. You are doing a great job of expressing yourself which is good. You aren’t giving in to the treatments nor are you giving in to the cancer. It all sucks. Keep your head warm and try to see that 15 watt light bulb at the end of the tunnel.
I am glad you are getting out to Road. I keep sending you prayers and positive thoughts. And know that your jwillingness to share this journey is inspirational, sad and often funny. Thank you!!
Have some fun at your quilt show!
Thinking of you a lot. Even though I have only met you once at Hip Stitch, I know you and Melissa are dear friends and I have come to be good friends with Melissa, too. This past 6 weeks I have been buddy and driver and supporter to my friend Agatha who was diagnosed with breast cancer via mammogram, ultrasound, biopsy beginning in Nov. and past Wed. Jan. 18 had surgery. They recommended lumpectomy and took 2 small masses and 3 lymph nodes. Her cancer is called Mucinous carcinoma and rarely spreads from the breast, note the word rare. Anxiously awaiting pathology report. She has already been told she will need whole breast radiation but as for more, depends on path report. Thinking of you and still think you are one strong woman. And yes, you are not your cancer. Hugs.