This is about chemo side effects. I don't think my essential health has changed (although I'm hoping that the tumors are being eaten up by the chemo), but I had a rough day today. As I start to write this, I worry about whining, but I also want to share some of this, because I know I'm not alone in experiencing side effects from the chemo.
The oxaliplatin makes me sensitive to the cold. Today was warmer than it's been, reaching almost 50 degrees F in Boston, so my long johns (under my pants), and long coat and hat and scarf and gloves made me feel and look overdressed for the weather. And, I confess, I was hot underneath all of those layers this afternoon. But, I had to keep the scarf over my mouth and nose because the chemo is making them super sensitive to the cold. My nose feels like it's 10 degrees out, with a biting wind, and every nose hair is freezing. But it was 49 degrees F when I walked to the train this afternoon!
In the elevator as I was leaving my office building, a secretary from our floor (but not my office, where everyone knows I'm on chemo) looked at me bundled up and said, puzzled, "It's warm outside." "I know," I responded, "but I'm on chemotherapy, and a side effect is extreme sensitivity to cold. That's why I'm bundled up." I felt that her comment had just confirmed for me how bizarre I looked.
The cold sensitivity makes me unable to drink even "room temperature" water. Do you know how uninteresting warmed, unflavored water tastes? I know I'm not drinking enough, as a result. My tea doesn't taste that great in the morning, and coffee is tasting too strong. What to drink so that I don't get dehydrated?
(A next day note on the beverage point: After I wrote that, I started to wonder what would make my tea taste better, and decided to add a little sugar and some milk, making the tea taste like what Mom would fix for me when I was sick as a child. It seems to be doing the trick, and I've had more liquids in the last 12 hours. Still, if anyone has great tips on what to drink to stay hydrated when only tepid or warm liquids can be consumed, and everything tastes yucky, I'm open to suggestion!)
The Xeloda can give me "hand-foot syndrome." I'm noticing already that my hands and feet have "hot spots," like I've been hiking and I'm developing blisters. Makes me feel like I should spend tomorrow sitting and grading those papers that are still waiting from the weekend. And I have decided that I'll work from home and not go to the city - I don't teach Wednesdays - and not have to deal with whatever weather tomorrow brings.
[A brief interlude for another voice within me: "These side effects aren't that bad. Lots of people have it a lot, lot worse." My inner response: "Yes, but they are my side effects. And besides, I don't want to compare my experience to other people. It's my experience."]
All right, there's more, but enough already. I still have my hair, I'm not vomiting, I can eat and keep food down, I can function well enough to work. I know lots of people have worse side effects than I'm having. But, with treatment that's essentially experimental with gallbladder cancer, and which may or may not be having an impact on my tumors, I have to keep asking myself if the benefit outweighs the problems. It's about quality of life as well as quantity. I'm not having a CT scan until March 5, and that's when we'll learn what's happening inside. And as each day passes since the oxaliplatin infusion, the side effects should lessen, and I should be able to drink milk shakes at night, and eat ice cream, and drink cold beverages. And I should be able to breathe the air outside, whether it's 10 degrees or 55, or even 80 (in St. John, in a little more than two weeks!) On this hard day, I just felt like I was fighting a losing battle, walking uphill into a storm, or some such metaphor for things being tough. So, I share this even though I know it's just a snapshot of one day in my journey through cancer world.
Tuesday, February 20, 2007
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Thank you, Lynne. It's good to know you're out there. I am sending you warm thoughts. Keep writing.
Lynne- Challenging days are going to happen, just keep your humor and positive attitude!! Try sipping beef or chicken broth. It may have more flavor for you. We are thinking of you, Patty and the children. Take care.
It's also good to know you are human, Lynne!!! Of COURSE you should vent!! Why not??? Jiminies! I vent and have absolutely nothing to complain about in comparison!!!
Hmmm....room temperature drinks, eh? Does red wine count?? ...JOKING!
I actually DO drink warm water...I actually like it ! ( stop laughing!) I like it with a little honey....and lemon sometime. How about some juice mixed with plain soda water for a little zip?
hmm...I'll keep thinking.
As for overdressing...again...don't feel out of place. There is a place for EVERYONE in this crazy, mixed-up world. I personally have been in long johns since November...and yes... I KNOW it's been mild...but personally...I'd rather strip layers than be freezing. Whatever makes you feel good..! It's not about how you LOOK...it's how you feel...and NOBODY likes to feel cold! This is where my hot flashes have been working in my favor!
Ok...my longjohns are my friend...as well as my scarf. Laura found a great way of wrapping your scarf around your ears/head and then around your neck for quite a fashionable look...and it keeps you toasty too!!
Ok...that's my note from the farm....LAAAA!
Would the visuzl make you smile if I told you that Taz the stinky goat wove himself in and out of his hut doors until he was hopelessly stuck.Being the gracious goatherdess that I am, I painstakingly led the less-than-bright creature back through each and every opening of the hut until he was finally free...he then took off and clotheslined me and I fell kerplopp like a sack of potatoes!!?? He really is not a very gracious animal!!
Tomorrow will be better....and if not..not to worry....I'll still be here for you!!
oh lynne- i'm wrapping you in my heart to keep you warm- it sounds like the chemo side effects are getting you down and they do- sometimes it's only your spirit that keeps you afloat, huh ????
so the tests on march 4th will be very telling- i think you have such a difficult set of choices to make- if the chemo is working, that makes these side effects easier to bear- if not so much, then you will be thinking about quality of life, yes- so hang in there and hang on and i know you are hanging on and you will be hanging on !!!!
meanwhile, i'll be wrapping you up in my heart and keeping you warm !!!
Oh, Lynne....Just know that so many of us are sending WARM-ing thoughts to you. Envision the warmth of St John and "intend" for it to help you THESE days, anticipating your wonderful family trip in the weeks ahead....Tea with honey has a way of warming and soothing the soul...as well as (MY favorite) a warm bath(OK, for ME, as HOT as my skin can tolerate until those hot flashes creep up!!), with candles, my favorite magazines, aromatherapy, and my "bath music" (hydrotherapy) of ocean waves accompanied by soft guitar sounds, and soft wooden flutes. It seems to restore my soul as I escape the stresses of the day and gives me a sense of well-being. OK, so SOME days I stay there ALL day!.....Thinking of you, Patty and the kids. Love, Jamie
I'm so impressed at how you can hang in there. Thanks for sharing.
Lynne – I’m a fan of warm cider or hot cocoa when I’m feeling chilly. And like others have mentioned, the warmth of water is both soothing and relaxing. Don’t worry about whining...I think you are simply being honest as you share this journey and the variety of physical and emotional responses that come with the diagnosis and treatment. Dealing with this takes a lot of courage and grace. In you, I see an abundance of both. I posted this on Leroy’s blog awhile ago, but I will share it again with you....
“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying – I will try again tomorrow.”
- Mary Anne Radmacher.
Hang in there friend!
much love, Sandy
Thank you for your honesty, Lynne. I wish I could offer some assistance about how to drink things - but I still can't taste much of anything I drink. I had the opposite problem during my treatment - couldn't handle anything warm. Now the temp doesn't matter, but since there is not any recognizeable taste, water and milk are it. When my treatment effects were at their worst, I just pretended I was at my grandma's house, held my nose and swallowed. (Grandma's little town had the worst water I have ever tasted - like someone had boiled eggs in it!)Keeping hydrated usually helped keep other side effects in check.
Thinking about you while I crochet in the evenings - Teri
I agree with adding honey or lemon to warm water: I like warm water with lemon. I also wear long johns and have three comforters on the bed in July! Just ride the elevator with me, I look like I'm about the rob the place as I have a face mask on to keep my large, Italian nose warm. That way, those underdressed folks would look like the odd ones out.
Don't worry about making a fashion statement. Anyone who takes the time to give you a look or make a remark or even think a remark isn't into the "don't judge a book" thing! Whatever you do, don't look at the students on campus who are running around in their T-shirts, shorts and flip-flops! Hang in there. Hope the side effects subside really soon.
Love and prayers to you, Patty and kids.
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