Tag Archive | fatigue

I’m Sorry… An Open Letter to My Followers

 

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

Hello Dear Readers,

I can’t believe it has been so long since my last post.  I thought about writing to you.  Every. Day.  I began posts that I never finished.  I had things to tell you.  I took a notebook to my appointments and filled page after page with thoughts meant for you over these long weeks months (gasp!) apart.  But I just couldn’t.  Share them.  Here.

It’s difficult for me to admit that things have been just plain crappy.  I’ve had infection after infection (pneumonia, kidney, cellulitis).  Super antibiotic after super antibiotic.  And I have zero energy.  Just getting out of bed each day has been such a struggle.

I’m beginning to think that if I don’t tell myself repeatedly on a morning that I don’t have a choice, I may not be able do it.  I am no stranger to forcing my body and mind to push on when they are begging me to just rest.  But pleading is being replaced more and more by screaming on the part of my exhausted body and mind.  And sometimes I am met with absolute refusal.  There are times during the day, or especially in the early to late evening, when I am just hit with insurmountable fatigue and I must stop, wherever I am, and lie down.

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

 

This was happening before I was diagnosed.  In the months before I heard the words, “Everything we biopsied was malignant,” I was struck with fatigue like this.  The kind of fatigue that stops you in your tracks.  The kind of fatigue that lets you know that if you don’t find a place to lie down and sleep immediately, your body will find one for you, be it a bench or a chair or a carpet or a patch of grass.  Your body doesn’t care about the where.  It will drop you anywhere.

This happens about once or twice a day now.  It’s usually after I’ve been up and out for appointments, etc.  By the time the kids get home, have dinner, and I help with homework, it has already been creeping up on me.  And then I just hit a wall and cannot do “it” anymore — whatever “it” may be.  Not for another minute.  And I go to the couch, drop down, and cannot move again.  It takes a great deal of cajoling to get my body to take me upstairs for bed.  Brushing my teeth seems an insurmountable task.  I just need to crawl into bed after the exhausting trip up the stairs to my room, and fall asleep.

But it is happening earlier in the day, too.  A few days ago, I went to an appointment in the morning and had to lie down in the car afterward and cancel my afternoon appointment.  And when I finally made it home, I had to lie down and couldn’t move again until the kids came home and I convinced my body that it no longer had the luxury of resting time.  But after dinner, I had to lie down again.

I don’t know if I’ve told you this before, but this is not normal for me.  I can usually push, push, push, until everything is taken care of, everyone is in bed, the day is done.  And then I will lay awake for hours, waiting for sleep to come.  And it eventually will, but sometimes not until the birds are beginning to stir outside and I know that the faint early morning light will soon creep through my velvety merlot curtains.  And just a few hours later, it will be time to get up with the kids and for the school routine to begin before I head out the door myself.

Well, that “normal” is long gone…  This hasn’t been happening for months now.  Now, when I hit that metaphorical wall, I will drift in and out of sleep.  Sometimes just until the dead of night.  Other times it is until the dawn begins to break.  But I just can’t stay awake without a major effort.

I do wake frequently.

I was experiencing night sweats “before.”  During the worst of the chemos.  And then ever since my radical hysterectomy and salpingo-oopherectomy two years ago.  But the hot flashes and night sweats that spiked when I had to have my my surgery two years ago had begun to wane (well, somewhat, anyway — when I say “wane,” what I really mean is slip down to a more manageable number/degree, if there is such a thing) about a year ago.

And now… They’ve ramped up again with a vengeance and have become far more intense and overwhelming than what I had been accustomed to, even when they were at their worst.  They have been even more overwhelming and exhausting in the past six months than they were in the first year without my ovaries.  I am waking about three times a night now just completely drenched.   So much so that I need to change whatever I’m wearing each time.  And it doesn’t matter what I’m wearing.  Flannel head-to-toe pajamas — drenched.  A soft robe — drenched.  A cozy sweatshirt and sweatpants — drenched.  Yoga pants and a light top — drenched.  A thin t-shirt and undies — drenched.  Just the undies — drenched.  It really doesn’t matter.  I will often lay a blanket down in the bed to cover the soaked bedding and to give myself a fresh start for the night.  And then I’ll do this maybe twice more per night after each soaking.

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

I’ve tried everything I can think of to curb the frequency or intensity of the night sweats, but nothing helps.

And then every day I find myself breaking out into cold sweats.  My face is dripping with sweat.  Drops of sweat roll down my legs and arms.  And then I find myself shivering and needing to change my clothes because I am so, so wet.

Sure, this happened before.  To a degree.  Surgical menopause at 35 will do that to you.  Or at least that’s what it did to me.  But this, this is so much worse.  It doesn’t feel normal.  So far from it.

It’s concerning and exhausting, to say the least.   I’m hoping (I think?) this increase in frequency and intensity might have something to do with the fevers I’ve been experiencing on a now regular basis over the past six months?  But then, what is causing the fevers?  Sure, I’ve had lots of infections.  But I’ve been on antibiotics consistently, with breaks of only a couple of days, if at all, between.  So it’s unclear as to whether the fevers are linked to the infections.

Sometimes I’m glad I’m too tired to expend the mental energy to think about it!

Well, this has become more of an explanation post than an apology letter.  But I began intent upon focusing on the apology.  Because I do owe you an apology.  You’ve stood by me, reading, commenting, emailing, or sending messages in some other way.  And I haven’t been the best with the communication.  Okay, I’ve been downright shitty, really.  But it is not because I haven’t thought of you.

It is not because I haven’t appreciated you.

It is not because I haven’t wanted to reach out to you.

It is just because.

I wish I could say or do better than this.  But I will try my best to give you what I can, when I can.  And I sincerely hope you’ll continue to reach out to me as you have been.  Because it has meant so much to me.

Even when it doesn’t seem like it, I am listening.  And I am grateful to know that you’ve thought of me, even if it is just a fleeting thought.   Because sometimes that makes all the difference in the world…

Thank you…

p.s.  Because you know I love to stick photos wherever I can, I’m adding a few pictures that illustrate (at least I think so!) the theme of The Daily Post‘s Weekly Photo Challenge topic for this week.  This week’s challenge asks participants to show readers a “Room” or “Rooms.”  Here are a couple of rooms other than the hospital and Cancer Center rooms above…

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The rooms below are from a visit to “Give Kids the World” with my boys’ best friend and his family.

Give Kids The World

B has Duchenne Muscular Dystrophy and was granted his “wish” by the Make A Wish Foundation and “Give Kids the World” back when he and my twins were in pre-school.

We were fortunate to be able to return to “Give Kids the World” with B and his family recently.  I am good friends with B’s mom.  The boys and B’s brother and sister all get along so well.  And we like B’s dad, too.  So it was wonderful to have some special time with B and his whole family.

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These are a few photos from a visit to a series of special rooms on the campus where each child leaves a shiny gold star containing his/her wish behind…  The ceilings were covered with wishes.  What a moving experience.

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Okay, off to bed.  Thanks so much for visiting.  I hope life is being kind to you…

My warmest wishes…

 

Silence Isn’t Golden — and — Weekly Photo Challenge: Inside / Little Dog Inside Big Dog

cancer in my thirties breast cancer 30s 30's dog dogs

There have been times in my life when I have agreed with the title of that old song, “Silence is Golden,” by The Four Seasons.  But my silence here has not proven to be one of those times.  As the days following my last post crept to weeks and then to months, I couldn’t believe that so much time had passed.  But I still felt powerless to do much about it.

Call it the result of unrelenting exhaustion.  Call it the result of a muddled mixture of intense pain and a haziness induced by strong opioid painkillers.  Call it an inability to balance new/worsening symptoms with life and its demands.  Call it what you will, but whatever it was, I just wasn’t able to pull myself through “it” to find the energy and space to write to you.

I value our time together.  I value our relationship.  And I didn’t want to just pop in to do a quick, crappy post while I was in the midst of feeling as though I was caught in a tailspin.

YOU:    “So, is it over?  Are you better?  Is this going to be a terrific post that was well worth the wait?”

ME:      “No.  No.  And no.”

YOU:    “Aw man, I was hoping for something riveting and inspiring.”

ME:      “I’m sorry, this post will be neither.  But I figured that if I waited any longer, the gap would just widen and it would be even more difficult to return.  So I am here, for better or worse, with a crappy post just meant to let you know that I have missed you and that I do value our relationship — probably more than you’ll ever know.”

ME:      “And, given the nature of some of the emails I’ve received from some of you, I felt that some of you might be wondering if I’d gotten much sicker and perhaps moved on to the great blue yonder.  To be honest, I would wonder the same thing, especially because some of my “virtual” cancer friends (cancer bloggers or online breast cancer community friends) have disappeared in this way when they’ve died.  Silence.  Then, after a few days or weeks or so, a husband or best friend or mom will pop in to say, “Sorry, _______ died last month.  I know she’d want you to know.”

YOU:    “Well, I didn’t want to say it, but, um, yes, maybe “that” thought crossed my mind.  This is a cancer blog, afterall!”

Okay, all kidding aside, I wanted/needed to say hello.  I wanted you to know that you are still in my thoughts.  I wanted to respond to the kind emails and messages I’ve received.

And I wanted to apologize for such a long silence.

Sure, I’ve felt crappy.  Sure, I’m struggling to manage life and the boys and everything else while feeling so cruddy.  But you’ve come to mean a lot to me and I owe you more than this silence.  Plus, this is a cancer blog, so I should be blogging about feeling crappy and about the ins and outs and ups and downs of this whole experience.

I should.

I know I should.

But I wage this positive vs. negative battle with myself all the time.  In my day-to-day life, I try to be positive and upbeat because this is what is expected of me.  So it is difficult for me to give myself permission to be “Debbie-Downer” in my day-to-day.  And sometimes that cup runneth over to my blog, too.  If you’ve been reading all along you know that this doesn’t happen often — I usually don’t have much trouble “telling it like it is” and spreading some gloom here! — but it does happen sometimes.

I’ll try to elaborate a bit more on how life has been soon.  But for now I wanted to end the silence.  Close the gap.  Get back on the horse.

And I wanted to thank you for sticking by me.

I’d also like to know how you are doing…  During my silence I have not only been a bad blogger, but a lousy blog reader.  But it isn’t because I haven’t thought of you.  In fact, I enjoy reading your blogs far more than I enjoy creating posts for my own, so I’m certain I’ve missed you much more than you’ve missed me!  So if you have a moment, please drop me a line / leave me a comment to let me know how you are — and I promise to pop over to visit your blog soon.

And I will be back soon to fill you in.  Even if I just write crappy one paragraph posts.  I’ll shoot for “quantity vs. quality” rather than the “neither” I’ve been giving you!

p.s. For old times’ sake, I’ll include a few photos that happen to be in line with The Daily Post’s Weekly Photo Challenge.  Okay, “on purpose” rather than “happen to be.”  But you know how I like pictures!  This week’s challenge topic?  “Inside.”  Participants are asked to photograph “something” inside “something else.”  [There’s more to it than that, but I’ll give you the skinny version in case you are tired, too!]

You know how I love my dogs, so I’m giving you photographs of “Ginger Inside Kevin.”  Or “Little Dog Inside Big Dog,” because I refer to them as “Big” and “Little.”

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Kevin is a Heinz 57 rescue who we brought to live with us after my dogsoulmate, Mattie, my mini schnauzer, died of cancer in 2009.  Ginger was a “Christmas/chemo/mastectomy/more chemo/radiation/and still more treatment gift” my sister gave me after I’d had a bunch of chemo and my bilateral mastectomy, and then was then destined to go through more chemo and radiation and other treatments.  My littlest sister, Laura, thought she would be a wonderful snuggler and that she’d make it easier to get through the difficult days, so she wrapped her up for Christmas…  And what a wonderful gift she was/is.

Well, ever since Ginger/Little’s arrival, she has ruled the roost.  Though significantly smaller than Kevin, she is definitely the alpha.  From the very beginning, she would climb into or onto Kevin and he wouldn’t move a muscle.  To this day, if she climbs into his curled up body, he stays in this position until she is ready to get up — mostly because she’ll bark at him if he moves an inch!  And since they are coincidentally almost identically colored, it is difficult to tell where one ends and the other begins.  Most pictures of the two of them together look as though I’ve snapped a photo of Kevin with a small dog-like growth protruding from his neck or back.

A looong explanation for a few photos!:

breast cancer in thirties 30s 30's dog dogs ginger kevin

Can you find Ginger?

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breast cancer thirties 30s 30's dog dogs

Once in a while, Kevin builds up the nerve to *attempt* to knock Little off his chair. He is never successful…

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***Good night and thank you for visiting.  Thank you for helping me through the dark days, even when you don’t know you are doing this…***

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I’ve Missed You — and Weekly Photo Challenge: Object

gator breast cancer thirties 30s 30's owl john deere gator world cancer day postaday weekly photo challenge object young twins kids

Hello dear readers,

I realized weeks ago that I had not yet posted in the New Year, but was feeling so awful that I just couldn’t force myself to do anything about it.  I decided tonight that this had to change this!

First of all, I want to wish you all a very Happy New Year.  May 2014 be filled with peace, joy, and (hopefully) health.  As I welcomed the New Year this year, my thoughts turned to family and friends rather than resolutions.  Even when it feels as though the world is crumbling around me, I know that I am fortunate in that I have good people in my life.  And I count you in that mix of important people who make my life better.  How many bloggers are fortunate enough to have readers email or leave comments to make sure they are alright?  I’m grateful to say that I am that one of those lucky people.

There is much I want to tell you and much I want to share — but I’ve been so crippled by pain and fatigue that I’m just going to have to share things in bits and pieces.  I hope you will continue to bear with me!

Until my next post, I will leave you with a couple of photos of the boys and a school owl they were asked to take care of and write about for a weekend.  These photos are from an Autumn ago.  There is far too much ice and snow on the ground for grass or light jackets or John Deere gators in the yard right now!  But the memories are nice…

All my very best to you —

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p.s. If you’d like to see other Daily Post Weekly Photo Challenge photos, please click here or here.

my suns blog

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[A Title & Post Written by My Son, M — all by himself!]

My mom has cancer.shes bin acting really tired.but I understand because she

has cancer.

I like watching movies with her and all that…

AND I love  going on vacation too.

my favorite place to go

 is florida.

sometimes I want my mom to play video games with me but she says shes to tired to play.I miss the old days.  🙂