Chemo ages you.
I’m convinced of that.
Just over one year ago I was walking a mile every day to work, and sometimes another mile between offices during the day.
Yesterday, I had done one load of laundry, one load of dishes, made lunch for Michaela and Ken, and then lunch and tea for myself, and after than my legs were heavy and my feet were in pain.
It amazes me to think that a mere 14 years ago I was stomping all over London and the British countryside for 10 weeks, and I was rarely as tired as I am right now.
When I was receiving the chemo dose of taxol at the halfway point, my oncology nurse commented, “You’re at the top of the mountain!” Looking back on that, I can see now that she meant we were at the zenith, so to speak, of my chemotherapy regimen with taxol, and I could begin the countdown to the last one. Which is something to celebrate, even though I still had 6 more weeks to go, and nothing had changed about my situation at that moment.
At the time, I was thinking “Yay! All down hill from here!” Never having climbed to the top of a mountain, I of course knew nothing about what it actually might take to come down off the mountain. I was all about “Yes! We made it to the top!” Little did I consider that coming down the mountain is just as hard and treacherous as climbing up. Perhaps more treacherous, as you are moving in the same direction as gravity coming down, and your chances of falling on your ass increase as a result. Still, I’m no quitter, so I’ll just keep on truckin’ cause I sure do want to get off this freaking mountain. I didn’t want to climb it in the first place, but I got chased up here by that damn tumor, so it was climb or perish and here we are. Now I get to pick my way down, oh-so-carefully, and I already know I will not reach the bottom unscathed. I have quite a collection of bumps, bruises, and boo-boos already, and the big finale still to come.
Just when I learned to take certain things for granted, like putting on or taking off a shirt over my head.
One week out from the port removal procedure, and things seem to be healing just fine. I had a good cry last week after I had it done. I don’t know if it was left over from the sedative they give you, but that whole next day I was a bundle of tears. First I cried because I couldn’t believe the chemo was over. Then I cried because the radiation was done. I cried because for the most part, the heavy stuff is over with, and it’s all recovery from here (which we know is heavy stuff all on its own). I cried over Ken’s procedure, and volunteered to have my own baby making equipment put out of commission. I told him I would do it because I was used to it. He just laughed, of course. And of course he was fine on Friday, and every day afterwards.
This morning he’s picking up the school auction catalogue and taking the kid to school. I’m home looking for socks to wash, which is a treasure hunt/obstacle course, as Ken hides them from me. Not really, but I’m not kidding, it’s like an Easter egg hunt looking for peoples socks in this house. Especially if they’re dirty, and the wearer is out of clean socks.
So I’ve been looking for his dirty socks to wash, as I have no idea how long he’s been running without a clean pair – he doesn’t tell me, he just finds a pair of not-too-dirty socks and wears those. He mentioned he took his shoes off at the doctors office on Friday, and put them right back on again, because his socks were not clean. I felt bad about that, sending him out the door with dirty socks. He works hard, and has been running around like a crazy person for weeks chasing down content for that auction catalogue. The least I could do is keep him in clean socks and underwear, right?
Which is why I’m poking around here this morning, on a mission to find socks. I found a few, and I’m not sure they all match one another, but into the wash they go. He’s got a big day today, and the man deserves clean socks to wear why he goes out to conquer the world.
But now I’m exhausted from hobbling around here, and all of the stooping over, and looking in hampers and under dirty clothes on the floor. And it’s not even 9am.
Port is coming out today!
After 20 weeks of chemo, 6 weeks of radiation, and a few weeks rest break, my beloved little purple port is coming out today.
Tomorrow will be 5 weeks since my last infusion.
During my 8-week course of the dose-dense A/C, I gained an additional 14 pounds, on top of my already 50 pounds of excess baggage. That was in spite of feeling so much like crap that I rarely ate. After two weeks off from chemo, I noticed I was losing almost a pound of weight per day, so that by the time I started the weekly paclitaxel infusions, I was back to my starting weight.
Then the scale crept up, up, up, again, until I was an additional 27 pounds. I didn’t worry much about it. I thought it would start peeling off again when I was through with the paclitaxel. I couldn’t wear my wedding ring, and I can’t wear most of my clothes, but hey! It’s temporary, right? Hmm. A two week break from paclitaxel, and no downward movement on the scale. I don’t think I can blame all this weight gain on the steroid any more, and I said as much to my chemo nurse when I went back on the paclitaxel.
However, today, despite not having changed a thing, my weight is down. Not by a lot, but it is definitely trending downward. Despite Halloween candy, eating WAY too many of the cranberry bliss cookies I made last week, and my love affair with cream cheese, the scale is moving ever so slowly (I’ll take it!) downward.
I’m still fat, I still can’t wear my wedding ring, and most of my clothes still do not fit – but we’re making progress, and it’s progress that I can see. At last.
We are about 24 hours post final paclitaxel infusion. Final infusion was a lot better than the week before. Last week I left absolutely drained. I’ve never felt that poorly afterwards, not since the dose dense A/C cycle. Maybe the premeds didn’t have enough time to take effect, but I felt like I had always expected a cancer patient to feel. So worn out, I was ready to cry. I couldn’t even look at people, I just followed Ken to the elevator, to the car. Once in the car, I was very upset. My hands tingled so much (I think I wrote about this last week) I was frightened, sure I was having some kind of horrible reaction. So I was worried going into this last one. Granted, I felt kind of loopy from the Benedryl, but not so completely worn out as the last time.
Later that evening, watching Halloween Chopped with the husband and child, I was so tired I could barely keep my eyes open, and so uncomfortable, I shifted in my seat and moaned and whined for 45 minutes or so. Ugh. By the time Ken shut off the television at midnight (the kid was already tucked in for the night), though I was ready to go to bed, I was WAY too restless to sleep. Ken was in his office, checking for work email and putting on his computer, so I got up and went back to the family room to read. I’ve been obsessively reading Phillippa Gregory historical novels, so time passes more quickly than I realize, and soon it was after 3am. Still I was not sleepy, and kept reading. Finally, I got sleepy and went to bed after 4am. At 6:30am or so, the kid woke me up. And for once, I was not bitchy and ”hung over” from lack of sleep.
So here I am on 2 and one half hours of sleep, and relatively speaking, I feel pretty great. Granted I’m not super active, I have only done one load of laundry, one load of dishes, and finally folded the towels that have been sitting on the couch for the last three days. I was in my pajamas until after 2pm, and am still wearing warm-up pants, rather than jeans, so while I’m clean (I showered), I’m still basically wearing pajamas. I hope I can get my jeans washed and dried before we have to leave for the craft store. I have only two pairs that fit me right now. Did I mention that I was 40 pounds overweight before I started this process, and I’ve gained another 27 since I started the paclitaxel. And no, I can’t blame this all on the steroid, though it isn’t helping. Ugh.
So why do I feel so good on 2.5 hours sleep, when on 4-5 I’m usually groggy and pooped out? Maybe it’s the fact that we’ve eaten a proper dinner the last two nights, complete with lean protein and a vegetable. Holy crap, how’d I pull that off two days in a row? Never mind, I won’t ask questions, I’ll just go with it…
Maybe it was the hazelnut syrup my husband brought home for me last night, and cleaning the espresso machine, so I could make my favorite Friday morning treat, a hazelnut latte (Thanks honey! XOXO).
Or maybe I’m still buzzing off that half box of Dilettante Café Creams truffles I ate last night (oof, now you know why I have gained 27 pounds!). Maybe I’ll crash by 6pm tonight – who knows! I’ll take a good day, and not spend too much time wondering why, and how to recreate it. Because one thing I’ve learned, whatever my status is at any given moment – feeling good, feeling like crap, bone tired – things are bound to change, and probably soon.
Now I think about it, my eyes are starting to feel a little heavy. Time for cup of tea, or possibly another mocha truffle…
Just back home after completing infusion number 11. Riding down in the elevator at SCCA, for the first time in a long time, I FELT like a cancer patient. So drained, and my hands tingling like they were shot full of the anesthesia they give you at the dentist…
And for the first time EVER, I had a moment when I wanted to call my doctor and tell her I don’t want to do the final infusion. My hands were so numb, it scared me. I kept thinking how I wanted to take a nap, but I was afraid to go to sleep, as I might be having an allergic reaction. Up to this point, I’ve been taking the paclitaxel like a champ. But the side effects are cumulative, so perhaps an allergic reaction could still happen, even though I’ve had no issues on that so far. Driving home with Ken I was having visions of ending up in the emergency room this time, and was considering calling the oncologist to tell her “I can’t do this again.”
Thankfully, the feeling has passed, and my hands and feet feel as they normally do during this process. Tingling and numb, but well controlled while I am taking the L-glutamine. And in no way frightening. Just annoying.
But I’ll let her know what happened, and how long the effects lasted, and let her do what she does best. Because she is awesome.
So my hair is growing, which is good.
However, a couple of weeks ago I got a bee in my bonnet to wear eye makeup, and found out just how much you NEED eyelashes, just to keep the powdered shadow out of your eyes. Most frustrating, as I had about 3-5 lashes total on each upper eyelid. Yikes! And don’t even get me started on how difficult it is to line up false eyelashes without the marker of your real eyelashes to guide you, or on how to know where to stop with the highlighting shade, when you have no eyebrows. Freak show potential here!
Now, fast forward to today. My upper eyelids, and I hope I’m not jinxing myself here, have a profusion of tiny, short lashes growing out and filling space. Whoo, hoo! Oh my gosh, I hope my whoo, hoos are not spoken too soon…
My eyebrows are a maybe, at least on the left. Short dark hairs seem to be growing in. Not so much on the right. Did I tell you I got fed up with them and shaved the rest off?
Two more infusions to go, so I may yet lose all ground I have gained here in the last couple of weeks. Sucker…
Its been quite a while since I have written here. I think part of my coping system is to normalize as much as possible when there isn’t some kind of decision or change coming.
Once we hit chemo and Tina was doing well with it. I just integrated it into the schedule. Monday Work, Tuesday Work, Wednesday Work, Thursday Chemo and Italian Sub at SCCA cafeteria Yumm!, Friday work. Weekend.. be mostly unproductive [Repeat].
I am close to caught up with work and we have a bit of a break from routine with the two week chemo pause. I want to have the discussion of what is the benefit of the next 5 treatments vs the long-term risk. I had painful planters warts that I thought were calluses this last spring and for a few weeks walking more than a hundred yards would become very painful. Once I realized they were warts and used the Freeze stuff. They were easy to treat and go away. But now I worry about Tina’s hand and feet and the real live affect of pain and numbness.
Walks in Paris and London, Exploring Yellowstone and Manhattan all the things I would like to get back on to to-do list for the coming years. Then there are hands, for beading, writing and knitting. The things that bring joy and relaxing to Tina. I worry that in a rush to just get it done… Or throw the book at stray cancer cells that might not even exist.. will have costs that are pretty high.
So as this round has brought on increasing pain and affects I have been falling out of the routine more and back into worry and crisis. As Tina mentioned I have have more nights of poor sleep.
Understand we love our current oncologist. The moment she walked in I saw it, she was a Geek.. that is compliment… I read her bio before we chose her and meeting her I got that vibe of someone who is immersed in her field of expertise and cares about getting it right and learning more for the patient. Not just BEING RIGHT.. Geeks know their stuff BUT are constantly learning and adapting to new info. Geeks take knowledge and turn it into a living art no matter the subject.
So I want to have the conversation about value vs. risk this week when we go back in to start the last five infusions of TAXOL. but once I frame the conversation.. I totally trust the Geek magic and her passion for this medicine to make the final call.
This is one of those things that you really don’t notice much, until it’s part of your life. If you take even an hour to study what is going on around cancer and the medicine, the vast majority of people are kicking its butt and surviving. The average 5 year survival rate is over 60% across ALL CANCERS. Lung being one of the worst but, breast is 90%+ and prostate is at 100%. There are some really bad cancers and stage IV is always a fight.. but people are winning those fights too.
However, anytime a lazy TV writer even on shows we love that usually have great writing like “Suits” on USA. [This may be the best show on TV right now.*] The plot device for killing off-screen characters with pathos is to have them die with cancer. Really people?.. Those of us out here fighting the beast are winning. But you wouldn’t know it from the mass casualties of fictitious off-screen wives, brothers etc. who just die from cancer to create a moment of pain to show how the characters can feel.
I have to say when I hear “My BLANK is dying of cancer” then see a hug to create emotion between two characters, its starting to piss me off.
So you have a tough character with a hard emotional shell, like a Harvey Spector (Suits) you need to show some emotion, really is it cancer, death or nothing? Get creative people surprise us!!
Yes, I want to get through one season of one drama or even ”a very special” episode of a sit-com.. without the LAZY ASS writers killing someone with cancer.
*If you haven’t watched Suits (USA Network), get on-line, rent the DVDs, whatever and start with season one and watch. This show has the best cast chemistry and writing IMHO since West Wing but is a lot more fun with some real solid emotional moments.
Feet feel a LOT better today. Nail beds of the fingers still a little touchy, makes it not fun to type this.
Toe nail beds feeling better. Still don’t want to clean my house, though.