I had my first chemo treatment on Tuesday, November 28th, so it’s been just over a week. I get tired more easily. I have had to change my eating habits. I’ve had to learn to be hyper-vigilant about self-care. Otherwise… all is normal.
Some nights I feel like I have a baby in the house – I’m up at least 2-3 times a night and wake up tired in the morning. Others, I’m up just once for a trip to the bathroom. Last night, I went to bed later and slept all night. As I learned this morning, this also has its drawbacks. More on that later. Either way, it’s going to be a l-o-n-g year.
Along with not sleeping, I’m back to having night sweats. From my head to my toes. The bad thing about waking up soaked is that when you get out of bed to pee, you’re freezing. I’m not allowed to get the chills. New practice: keep an extra night shirt next to the bed to put on when I wake up in the night. The only downside is more laundry. I can handle that.
As part of the chemo regimen, I’m needing to eat a lot more protein, a lot less carbs and sugars, and do this more often during the day. Thankfully, so far, I’m hungry and eating. I’ve noticed that my blood sugar will drop more often than it used to, so I need to make sure I have snacks available. Cheese sticks, protein bars, fruit, hard boiled eggs and peanut butter toast are all good. I’m feeling a little sad that I’m not interested in Twizzlers and Red Vines. Maybe I’ll make up for that with some heavily buttered popcorn. Hmm.
My body craves weird things when it’s missing key nutrients. For example, I crave ice and sweet things when I’m low on iron. Yes, ice. It’s called pica. Don’t read too much into it. Sometimes I crave salad dressing or pickle juice. On better days it’s apples. Since getting my iron back up to “normal,” I’m not craving sweets. Even when they’re in front of me, I’ll choose the cheese or other protein instead. This is good because cancer likes sugar, and I don’t like cancer so I’m going to starve my cancer to death. I’ll eat Christmas cookies next year.
There are days I wish I could make this go away by drinking wine and margaritas. I’ve never been one to drink alcohol while on meds, and I won’t start that now, but I don’t have to be a complete tee-totaler, either, which is good. Wine, beer or cider will be a “treat” on those days my stomach is behaving or when it will go really well with a great meal. FYI – I’m eating a LOT of great meals. Just not drinking like I am. :-\
Getting liquids in has been a challenge. I’m not a big juice or water drinker. Or I suppose I should say “wasn’t.” Not that I am entirely yet, but I’m working on it. The main problem has been my acid reflux. Pepcid wasn’t enough so I ended up going back on Nexium. So far, so good on that. The main issue with drinking is that nothing tastes good. There is a salty taste in my mouth that my brain is equating with ocean water, and I don’t mean the kind from Sonic. I’ve tried straws. They help a little. The real problem is that comfort drinks like Sprite or an herbal tea taste awful on chemo. There is hope for Gatorade and cranberry juice. It’s a work in progress and I’ll keep you posted.
Everything I’m taking has some sort of side effect. One of my meds is supposed to help create white blood cells. Common side effects of this medication are: bone pain, muscle pain, and headaches. Bone pain is an interesting way to describe it. I think I now understand what growing pains might feel like and I have a lot of sympathy for the kids that get them. Thankfully, this is manageable with Tylenol and Advil.
Pretty much EVERYTHING else causes either constipation or diarrhea along with fatigue, headaches and flushing. So great!! Now I don’t know if I’m having a bout of PMS, menopause or it’s the medication. I suppose that I could go by whether or not I want to tear you a new one if you look at me wrong. That should narrow it down to hormones of one sort or another. Isn’t this fun?
Chemo changes your body’s pH. I’m in for a while of trying to stave off what amount to canker sores in my mouth. Some of it can be done with diet. Some of it is controlled using mouth rinses and super-duper toothpastes. Some of it can be managed taking Lysine supplements. So one of those after effects of getting a full night’s sleep is waking up with a very dry mouth and a sore spot because it got too dry. Yay.
I have my moments when I’m really good at self-care and others when I’m really not. Seeing how I got here and what I wasn’t doing makes me realize that I have to get A LOT better at it and be A LOT more diligent about it.
My diet needs work. There. I admitted it. I don’t live on Cheetos alone, but I could certainly have stood to eat a few more salads in the past few years. While I like a good steak, red meat isn’t the first thing in my freezer. There’s a good lot of chicken and pork in there. What’s missing is green leafy vegetables. Kale, spinach, beans… And, there’s way too much sugar in my diet. The past 6 months especially. Back in the mid-80s when aspartame was becoming a thing, I had a psych professor who told me what it was doing to me and to not drink diet drinks. I took her word for it and stopped. I drank flavored waters (LaCroix or Canada Dry) and I started drinking a lot more tea. This works well because neither has a calorie in them when you don’t add sugar, and I don’t. My downfall is candy. Well, and the occasional cupcake. Oh, okay, fine. They’re more than occasional and there are usually more than one. Since starting chemo, no more.
I need to stick to an exercise plan. I was dumb. Back in the late 90s, I was in a relationship that I should never have been in and when it ended I was a mess. A BIG mess. Like 100 pounds overweight BIG mess. I fixed that. I dropped over 70 of those pounds. I rode an MS-150 and a half. When I got to Eastern Washington, I joined a new gym. I worked out with a trainer for a while. I found places to ride my bike. Life was good. Then… I met another guy. I wasn’t really ready for a guy. We did some walking and hiking together. He encouraged me to go to the gym. Life was good. Then we broke up and I knew I had some big issues to fix. That’s when I got really dumb. I knew that another guy would be a huge distraction, and I didn’t trust myself to say no to dating. So… when I moved from one side of the Seattle suburbs to the other, I stopped exercising. I quit the gym. I stopped riding my bike. I stopped walking. I let myself gain those 70 pounds back. I wasn’t particularly depressed this time. I just figured if I was fat, no guy was going to ask me out. Pretty much worked for that, but it’s taken a huge toll on my health. I snore, don’t sleep well, have reflux and a small hiatal hernia because of my weight. My feet and knees hate me. They have every right and I don’t blame them. When my oncologist approves it, another pair of knee surgeries are the next thing on my list.
I need to stop self-medicating with vitamins and supplements. My grandmother had Alzheimers and received B12 shots regularly. They helped some with her lucidity and memory. So when I found myself in a brain fog half the time, I figured I needed more B12 so I was taking B12 supplements along with a few others. I wasn’t paying attention to the fact that I was run down and completely exhausted half the time and it was getting worse. When your brain’s not getting oxygen because you have no iron, decision making gets a little suspect. Calves spasming? Take some magnesium. Feeling run down? Take some Airborne and vitamin C. Spending your days inside and not getting any sun? Pop a couple of vitamin D and calcium. Feeling a little plugged up? Maybe some fish oil will help. Good to go, right? Seems plausible enough? Yeah, not really. Feeling the way I did a month ago vs today, there is no argument for eating processed foods full of processed sugars, and definitely no more sugary snacks.
Stopping to enjoy the roses and the view are things I’ve always enjoyed. I take the moments when I can. Now, I’m strongly reminded that I need to make those moments rather than wait for them to happen. If I need a nap, I’m taking one and not apologizing for it. There will need to be planned mental health days in my future. Our brains need a break from all the stuff the rat race wants us to think we need to do. We need hobbies. We need things that aren’t anything like the work we do for a living to keep us from getting stagnant. Seriously, take a weekend to not look at your work computer or mail. Go to a museum, paint a picture, take a hike, read a book – and when you go back to work, pay attention to how much better you’re relating to your coworkers and solving problems. You’ll be shocked and surprised at how well this actually works.
Last but not least, there’s the emotional part of self-care. I didn’t purposely save it for last. It kind of fell there. Others may put it higher on the list. For me, I’ve noticed that some of my emotions are a little more raw and close to the surface. Some of that’s just simply the weight of what’s going on and some is probably the meds keeping me up at night. I’ll be getting some massages and some acupuncture to help with nausea and the tummy troubles. I’ll be doing more soaks in my tub with epsom salts. I’ll be firing up those lovely smelling candles that remind me of a house full of love, and snuggling in.
In my family we have sort of a joke that every now and then God picks you up, tips you over and checks your expiration date. If it’s not your time yet, you get put back down with a reminder that next time could be your time. I’ve heard of people falling 4000 ft out of a plane and living to talk about it, and I’ve heard of people getting nicked shaving and dying from that. This life comes with no guarantee that you’ll wake up to find you’ve survived another day. You have to live each day with some level of purpose. I find purpose in a lot of different things. ‘ve had other reasons in my life to face my mortality. I’ve been in situations that others would run from, and I’ve enjoyed things that would scare other people half to death. I’ve been scared half to death. I’m not afraid to die. I intend to continue living as if I’ll be here another 50. One way or another, I’m skidding in to my grave exclaiming, “Whew!! What a freaking ride!!”
All that said, there are days I need a little help from my friends. I am ever so grateful to have so many friends and people sending me prayers and good thoughts and care packages that I feel sometimes like my heart might just burst. During those tough moments in the middle of the night, I remind myself that there are forces in the world bigger than me and that I need to have faith that things will turn out all right. From my former church group in Houston, I received a very beautiful prayer quilt and a devotional to get me through this “Year from Hell.” I’ve also received a pair of really beautiful, and also handmade, prayer shawls. They make me feel closer to the folks that gave them to me and to my God, and there’s no price you can put on giving someone comfort, so thank you to you all.