Tag Archive | lymphedema

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.

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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…

 

Weekly Photo Challenge: An Eerie Feeling — Is it Cancer?

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When I saw the Weekly Photo Challenge for this week — Eerie — my first thoughts weren’t of Halloween costumes or fake blood or ghouls or goblins.  No, my first thoughts were of the sore spot and the “thickening” in my chest in an area that cancer once called home.

Since my bilateral mastectomy three years ago, I have been checking the area often enough. Monthly, I suppose?  Maybe less?  It’s often enough that I would notice a change.

5 days post mastectomy and axillary lymph node dissection for stage 3c breast cancer

While I rarely have trouble with my right side since the surgery, my left side has been a different story. Because of the depth/extent of my left mastectomy and the resulting nerve damage, I have been plagued with a range of unpleasant feelings, from numbness, tingling, itchiness and dull pain, to searing pain and what they term “phantom pain.”

You may have heard of phantom pain before.  Maybe you’ve known someone who has had a limb amputated.  Or you’ve watched an interview with a war veteran who lost an arm or a leg.  Or you follow Grey’s Anatomy and saw the episodes when Arizona was struggling after losing her leg in the plane crash. Or maybe you’ve never heard of it and just think it sounds kind of eerie.

Well, it is kind of eerie.  And not just because of its name.

“Sometimes after a body part has been amputated, it feels as if that part is still there. This is called phantom sensation. It…is not pain, but is a “tingly,” cramping, or itching feeling where the missing part used to be.

[Phantom pain, on the other hand, is painful.]  The pain feels as if it is in the part that is missing. Phantom pain…may feel like a burning, crushing, or stabbing sensation.”  [UPMC.com]

This is a roundabout way of explaining to you that despite the wide range of sensations I’ve experienced on the left side, none of these feelings have ever prompted me to pick up the phone and call the doctor because I’ve always accepted them as my new normal.

But what I’ve been experiencing recently does not feel like the pain or other sensations I’ve become accustomed to in the past three years.  It feels different.  It feels like the pain I felt before my surgery. Like the pain I was experiencing in my breast when my cancer diagnosis came 3 1/2 years ago.

Now maybe you are thinking that doesn’t really mean anything.  I don’t even have that (or any) breast anymore.  I was thinking this, too.  But then I reached under my shirt and felt the area.  In fact, I’ve repeatedly “checked” the area over the past week.

And it feels different.  Like a thickened “something.”

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At first I thought maybe it was swelling.  Swelling has been an issue for me since I received my first intervention — months of dose dense chemo meant to make my inoperable cancer operable.  When I was finally ready for surgery, it was a different kind of swelling.  Swelling in my arms from lymphedema.  And despite having surgical drains placed to collect excess fluid/blood that can accumulated following the surgery, in the space where the tumor was, there was a significant amount of swelling in my chest/underarm/shoulder area. While surgical drains are very common with this type of surgery, leaving them in for many weeks is not typical.  But there was so much fluid that it was necessary. Even still, I developed large seromas [a seroma is a collection of serous fluid in the dead space of post-mastectomy skin flap, axilla or breast] that necessitated trips to the surgeon’s office every 2-3 days so he could insert a long, wide needle and manually drain the fluid.

But it’s been a while since I’ve had a seroma or swelling in this particular area of my chest.  And it does not feel like swelling.  In fact, it doesn’t feel anything like what I’ve become accustomed to.

Normally when I touch the area where my left breast used to be, since the tissue and muscle are missing, I feel rib bones (or the spaces between them) through a thin layer of skin.

It’s odd, really, to go from feeling the squishy, rounded softness of your breasts, to feeling the hard, unforgiving rigidity of bone.

It’s a difficult adjustment to make.

And though you may con your brain into accepting the new “normal” day in and day out, your fingers never really forget.  Touching the area where your breast used to be is still just as jarring for your fingertips as it was in the beginning.

So when something is different…less chiseled…more flexible…softer, your fingers notice.

So it is easy to recognize when something is different or awry.

Maybe it’s nothing.  Maybe it will be fine.  It’s probably nothing.  It will probably be fine.  I haven’t even mentioned it to anyone in my life other than “you” because I’m almost sure it will be okay.

But the eerie feeling I had this past week each time my fingers were drawn to my chest was enough of an incentive enough for me to call the office of the breast specialist who diagnosed my cancer.  And it was enough to make me accept (and not cancel) an appointment for 7:30 this morning so I can find out for sure.

I will leave you with my “eerie” photos…

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Even more eerie than fake blood is real blood… These are my mastectomy drains.

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Kevin looks for ghosts amid the cobwebs this Halloween

As always, thank you for being here.  And if you would like to participate in The Daily Post‘s Weekly Photo Challenge, just click on this link.

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