Call me crazy, but I actually thought that a week after chemo ended I would be on the road to feeling better. Clearly that was naive thinking. And probably has something to do with the fact that they conveniently don't tell you many of these things up front. It's not that they're lying to you exactly, but I guess they don't want to overwhelm you with small details like it could take MONTHS and maybe YEARS to start feeling like normal again. Oh, they tell me this now with a smile on their face that says, "you poor sweet girl, thinking this would all go away," but I hadn't considered that two weeks after chemo was over I'd still feel like crap. UGH!
Because I'd love for others not to be surprised by this, here is how I currently feel (or at least, what annoys me the most):
(1) I am pretty sure that I have aged TWENTY YEARS in these past 20 weeks. No joke, I feel like an old lady. Watch me start walking after sitting/standing for a few minutes and you will believe me.
(2) I am tired. All. The. Time.
(3) I am up 13-18 pounds from my pre-chemo weight. It depends on which weight you're comparing to...the first day of chemo weight or the summer weight before all this started. Either way...SUCKS! I have one pair of jeans and of course some great sweaters (which don't work so well with this unusual heat wave we've been having) that fit. Oh, and my pajama pants. But that's it. Keith has offered to loan me some of his soccer referee shorts...classic.
(4) I think part of this 13-18 pounds is water weight/edema. Dear God, my skin is tight everywhere: toes...arms...of course, legs. Ick. And this is normal. And no one is concerned. (Well, I am, and I'm starting to do something about it...shhh!) There is only about 20 minutes when I first wake up in the morning where I don't feel stiff and sore because of this. And do you know what they say to do to help with this? Don't stand for long periods of time. Sit with your feet elevated. Walk. Hmmm, call me crazy, but doesn't walking require standing for a period of time?
(5) My hair is growing back and I'm now a blonde. This is not bad, just weird!
(6) I will probably die of a heart attack before the cancer kills me. Okay, that's a little doom and gloom, but is a reality. The specific chemo I had damages your heart and you can only have so much of it in your lifetime. I've already hit my maximum dose. And when I walk up the stairs or lift boxes of Pantry Packs I am sure that I am having that heart attack.
(7) Chemo brain + me = stupid. Enough said.
(8) I can't remember what I was just going to type here. See #7.
(9) Oh yes, that's right, I was going to mention that I probably have half of my taste buds back. Which is GREATLY improved over having NONE, so I will not be complaining about this. I just had my first mocha since before Thanksgiving. Miracle. We ate at Dick's over the weekend and I could taste that cheap tarter sauce that you can smother your french fries in...and the french fries. (If you comment here about eating healthy, you will no longer be my friend).
(10) The neuropathy is getting better. I can feel my fingers most of the time (they do go numb intermittently still). My face is rarely numb, and I think that my shoulders are back to normal. So, only walking around on numb feet is still weird.
(11) I have NO temperature regulation. Can you say chemo-induced menopause? Oh yeah, this is a winner. And might be permanent. Because of my "age" there's no way to know for sure. Oh goodie.
(12) Pain, pain, and more pain. Yep, it's pretty constant. Not a sharp, shooting, someone stabbing me with an ice pick pain. But kind of a consistent, dull roar type of pain. All over. More fun.
(13) Will there ever be a day when I'm not DYING of thirst? Today, I was watching a tennis match at school. I had 2 bottles of water, 1 bottle of green tea, and 1 bottle of some weird flavored water. In 2 1/2 hours. Because I was sure I was going to die if I didn't. I've been typing this post next to an empty glass of water thinking my husband will be dead if he doesn't refill it soon.
(14) I've learned what "hitting the wall" really means. Because I've hit it. And when you use it in sports to discuss you're performance, you are not using it correctly. Because hitting a wall actually means HITTING. A. WALL. And not being able to go one baby step farther. I've done it a few times these past few weeks. I walked down the street to the neighbors' and thought I'd have to spend the night. I carried a cooler filled with water bottles across a soccer field and basically died in the stands. If only I was kidding.
(15) I'm TIRED of being a patient. And I'm starting to be a bad one. And I don't care.
That's all I can think of right now. Jealous, right? Fingers crossed that these get better some day...
I'm sorry, Shauna. You're most definitely not stupid, and certainly courageous and shining despite your discouragement and hitting a wall. Thanks for sharing all of this with us. Your humanity shines and we are all rooting with you. I'm sorry for the daily minute to minute suffering that no one really quite understands or needs to withstand. :(
ReplyDeleteOh my dear friend! In the big scheme of things you are just minutes away from the end of your chemo. It WILL GET BETTER!!! I promise! I have come out the other side (please God, let it be the other side!) and have lived to tell you that you will feel better! You will! Okay, maybe not soon, but you aren't doing the thing that was causing all the symptoms. Dick's french fries don't lie! And really, remembering stuff is just SO overrated! Hang in there, girl! I am a GREAT cooler carrier/expiring walk victim rescuer, so lean on me, baby! But seriously, did you really need to do all this just for the blonde hair?!? (Next time, let me introduce you to my friend Clairol...)
ReplyDeleteBy the way, CURLY HAIR ROCKS!!!! Can't wait to see it!
Sending you love, light and random moments of clarity!
Cheryl