Tag Archive | hospital

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.

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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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Weekly Photo Challenge: From Lines to Patterns — Prelude to Toplessness

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As I was assembling photos for this week’s photo challenge, I stumbled across a file filled with photos from September 2010.  It was three years ago this month.

It’s safe to say that the dusty manila icon on my computer screen stopped me in my tracks.

It was filled with good memories from our trip to Florida with jme and my mom.  It was an important trip for many reasons.

I learned that I had cancer that April and had been having a horrible time with chemo ever since.  So when I finally had a break from the Adriamycin, Cytoxan, Taxol and Herceptin, we found some supercheap last minute plane tickets and I threw our clothes in a suitcase.  We were off with just a day or two’s notice.  This was my attempt at finding the spontaneity I’d been told The Big C endows you with.

I remember being supersick but grateful to be there.

Especially because of what was looming over my head.  Other than the cancer thing, of course.  What loomed, large as life, was the fact that I would be returning home the day before the surgery I had been anticipating since April.  It was time for my bilateral mastectomy and complete axillary node dissection.  My tumors had finally shrunk enough to make my formerly “inoperable” cancer “operable.”

I’m explaining all of this because I looked at the shots of superbald me smiling next to my family in Treasure Island, Florida, and I was filled with the same sense of dread that plagued me on that trip each time I stopped to consider my reality.

And then I skipped ahead one image too far and saw myself in the hospital bed.  Days after my surgery.  Showing my bruised body and bandages and blood-filled drains to the camera with a vacant look in my blue eyes.

For all the time I’ve spent in hospitals, there aren’t that many photos of me within their walls.  But I recall thinking that it would be important for me to have some photos from my weeklong post-surgical stay — in case I ever wanted to document my experience in some way.  There are only a handful of photos, but there are enough to make me swallow hard.  Pictures of me with bandages, and some without, as I look at my incisions for the first time.

Fast forward three years and here we are.  I have this blog, this platform, and I think I am ready to share.

But not just yet…

I still need a day or so to wrap my head around what I am about to show you before I post the images.  And, who knows, maybe I won’t be able to post all of them?  Maybe it will be too much for typically modest me?  I truly hope not, because I think this is an important part of my story.  An important reality that needs to be shared to blow a hole in all that pink frilly nonsense that makes breast cancer seem less serious, less deadly, less disfiguring.

So please bear with me as I summon the courage to post this pivotal piece of my story.

In the meantime I will lighten the mood with this week’s challenge photos.  Titled “From Lines to Patterns,” this challenge tasks us with interpreting lines and patterns through the camera lens:

“We see lines and patterns in the world around us, in nature and things man-made. Sometimes we don’t realize they’re there: on the street, across the walls, up in the sky, and along the ground on which we walk.  So…grab your camera, get outside, and snap a great shot of shapes or lines that you stumble upon, or a cool texture or pattern that catches your eye.”

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My little W

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“Under Construction” — Spring 2007 — I’m wearing the same clothes I was wearing in this photo right now! (But the pants are tighter!)

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The beginning of Autumn at the Christmas tree farm

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M climbing the giant web

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Stripes and patterns: Max, our Leopard gecko, was a gift for my 20th birthday. In her younger years she was a vibrantly-colored patterned beauty (for a reptile, anyway!). This was her last picture — she died of old (15 years!) age later than night.

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My Mam’s “Fancy Jell-O”

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NYC

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Thank you for visiting, for looking at this hodgepodge of photos, and for standing by me as I share my story.  I am a grateful girl.

See you soon…

P.S. To participate in The Daily Post’s Weekly Photo Challenge, just click here or here.

Man of Science, Man of Faith

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If you were a Lost fan and saw every episode (as I did), you might recall an episode titled “Man of Science, Man of Faith,” (S2, E1).

It was the first episode of season 2 and the episode where Jack, a surgeon, meets his future wife.  She is brought into the E.R. after a devastating car accident that leaves her paralyzed.  Jack plans to operate but tells her that the possibility of regaining function is almost nonexistent.  Jack’s father, a senior surgeon, witnesses this exchange and chastises his son for squelching his patient’s hope.  Jack barks that her spine is crushed and that any hope he’d be giving her would be false hope.  He performs the surgery to the best of his ability, but she is so damaged that he believes she is still paralyzed and that he was unable to fix her.  When he goes back to apologize and tell her she will never have feeling below her waist, she begins wiggling her toes.  Jack, who was previously only a man of science, realizes that science and faith merged to create a miracle.

My friend Nancy has known about my cancer since the beginning.  She watched me barely make it through harsh chemos.  She visited when I was giving myself daily injections of Neupogen as my white blood cell counts plummeted.  She came to say goodbye on the eves of major surgeries.  She brought dinners over to feed my children when I had I.V. bags full of fluid running into the Powerport in my chest and was vomiting so much that I could barely hold my head up.

She watched me spiral downward into a deep well of cancer.  And then she watched me slowly claw my way up to the surface again.

And somewhere in the midst of this, she came to my door with both fear and hope in her eyes.  She told me that her husband, Frank, had something show up on his CAT scan.

I knew that Frank’s hadn’t been feeling well.  I knew that he didn’t look well.  And when I last saw him, the yellow tint in his eyes did not go unnoticed.

She said that he was scheduled for surgery, but that God was good and that he would be fine.

As you may have guessed, Nancy is very religious and is outwardly so.  She has no qualms about sharing her beliefs.

Nor does she have any trouble with telling others to have hope and faith.  She has done this with me many times since my diagnosis.  She has even gone so far as to tell me in a roundabout way that when I am not doing well, it is because I am not trusting in God and not being faithful enough.

It is always a difficult thing for me to hear, especially during the times when I have felt my worst.  I’d be lying if I said the idea that I am responsible for the cancer for any reason is a tough pill to swallow.

But I listen and nod my head because I know Nancy is not saying these things to hurt my feelings.  I know she says them because her faith is so strong that she can’t see these situations from any other angle.

Frank’s surgery revealed a small tumor.  It was malignant.  They also found a small amount of cancer in one lymph node.  The good news was that the surgeon managed to get clean margins.

I was noticeably concerned, but Nancy reminded me that God is good and that the cancer was small and her husband would be fine.

Frank is a doctor and a man of the cloth.  Frank is both a man of science and a man of faith.  Usually.

When Frank started chemo, Nancy did her best to make healthy foods that Frank could tolerate.  She took care of him and they prayed together regularly.  They both had faith that everything would be fine.

Frank had a really difficult time with chemo and eventually decided that he’d had enough because it was making him so sick.  They repeated his scans and everything looked good.  So they both said “God is good” and made the decision to stop the chemo.  Frank was so sick from the chemo that he and Nancy thought it wasn’t worth continuing, especially when his scans were good and he had God protecting him.

I was reeling over this decision.  I insisted that Frank should continue to pray, but that he should also consider finishing the chemo.  I repeated that he would be horribly sick during chemo, but that he would feel better when it ended.  I said that it would be worth it in the end because it would give him the best shot at life.  I pleaded with them then — and many times since.

But they insisted that they were going to let God take care of it.  He didn’t need the harsh chemo.  He just needed to be faithful.

So time passed.  His scans were still good.  I insisted that he go back and finish, though.  But my friends told me that it wasn’t worth the side effects and that God was healing him.

And then he didn’t feel well.  He was having trouble eating.  He didn’t look good.  He was losing weight.

A few weeks later, Nancy said Frank had collapsed and they were going to the hospital for dehydration.  It was the second time in a month.

I suggested that she look into home I.V. hydration so he could avoid these hospital stays.  And I also pleaded with her to reconsider the chemo decision.  She said that it wasn’t open for discussion.  Frank did not want to get sicker with chemo and she wasn’t going to push it.  She still insisted that he would be fine.

He had to go back into the hospital last week.  Again for dehydration.  But this time the scan revealed something.  But she didn’t tell me about it.

She called tonight during dinner.  She asked about the times when I had home hydration because the hospital was giving her a hard time.  They told her that he would need to enroll in hospice and sign a DNR before they would start home I.V. hydration and was this what I had to do?

I told her that it wasn’t at all.  I signed a few forms at the Cancer Center and then a few more when the delivery truck and my nurse showed up at the door.  But it wasn’t hospice related.  And there was no DNR to sign.

The conversation haunted me.  Then I learned that Frank was no longer going upstairs.  Nancy was giving him sponge baths in the living room.  And a hospital bed had just been delivered.

I was sick to my stomach because I had been through this with loved ones before and I knew what it meant.

Nancy said that the latest scan revealed that the cancer had metastasized to his stomach.  That he has 3 months to live.  3 months.

They are scared.  And rightfully so.

And my heart aches for them because I love them both and I don’t want this disease to take Nancy’s husband.

I do believe in God and I do believe in the power of prayer.  But I also believe that modern medicine exists for a reason.

I  wish they could have found a way to balance medicine and faith.  I wish he had finished the chemo.  And I’m sure they do, too.

 

Palliative Care at 30-Something. What Does it Mean?

Palliative Care Integration Model cancerinmythirties.wordpress.com breast cancer thirties 30s 30's death dying hospice

Palliative Care Integration Model
Image Credit: University of Alabama School of Medicine

If you’re like me (until fairly recently, anyway), when you hear the words “Palliative Care,” you think HOSPICE.

Hospice is a scary word in the cancer world.  At least that’s been my experience.  In Cancerland, nothing comes after hospice.  That’s it.  Game over.

So when you are a 30-something-year-old and you hear your oncologist tell you that she wants you to see a Palliative Care specialist, your heart might skip a beat.  I know mine did.

For me, I think it is because I was there as my grandparents went through cancer and treatments and eventually ended up on their deathbeds.  I was there when hospice began for them.  And the fact that the start of hospice coincided with the start of their palliative care was not lost on me.  So it’s only natural for me to associate one with the other, right?

Things were different years ago.  My grandmother suffered with her shiny bald head marked with surgery scars and radiation tattoos and burns from the treatment for her brain cancer.  She suffered with no relief until her poor shiny, wounded head lost its luster.  She suffered until hospice started.

The hospice folks came into her home, set up a hospital bed in the dining room, and they began her palliative care, finally, with some heavy duty drugs.  But she suffered until that point.  And even afterward because the pain control wasn’t great.  It was almost a relief when she slipped into a coma and finally died because it was so painful to watch her suffer and to hear her moan in her sleep when we knew that all hope was lost.

My grandfather’s scenario was different.  I’ve blocked out the length of time he actually suffered with lung cancer.  I was there, so I should know.  But it is too difficult to remember how long the cancer actually took to kill him.

What was different about his experience?  When he was ready for hospice, they didn’t come to us.  We moved him to a hospice.  This was where his palliative care began.

But it only lasted for a day.  We moved him to the lovely hospice home, they started him on morphine and gave me special swabs to keep his cracked lips moist.  The volunteers were warm and comforting and did their best to keep my grandfather pain free.  He died that night.

So it’s likely that my ideas about palliative care and hospice are rooted in my experiences.  I learned that palliative care was end-of-life care. But this is not true.  At least not anymore. So what is it, exactly?

From the Cancer Center’s brochure:  

Palliative Care is medical care focused on relief of the pain, symptoms and stress of serious illness.  The goal is to help people live comfortably and to provide the best possible quality of life for patients.

Patients struggling with the uncertainty of serious illness need comprehensive care and support.  They need to know they aren’t alone.

What Can You Expect from Palliative Care?

  • Relief from distressing symptoms such as pain, shortness of breath, fatigue, loss of appetite, difficulty sleeping
  • Improved ability to carry on with your life
  • Improved ability to tolerate medical treatment
  • Better understanding of your medical condition and medical choices

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Doesn’t sound so bad.  Sounds good, actually.  So I’m far less apprehensive (and maybe a little excited?) about my appointment at 8:30 this morning.  And I feel pretty lucky to be going to the Cancer Center at the best hospital in our area to meet with a specialist on their team.  Of course I’d feel luckier to not be 30-something and in need of their services, but I’ll take what I can get at this point.

I will let you know how it goes…  Though Percocet (Oxycodone) has been a faithful friend for a long while now, I’m hoping there might be something that works a little/lot better — and that’s less liver toxic — in my future.

We shall see…  Good night…

$50 Straws AND How Cancer Changes Everything

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A different day. A different place. In a less hospitally-looking reclining chair at the Cancer Center.

This will probably seem like an odd post, but I’m going to present a snippet of my afternoon from two different perspectives for no other reason than “just because.”  Thanks for indulging me.

Scenario 1:

Across the room, a girl sits in a recliner with a small table beside her.  She is sipping a large cup of tea.  The tea bag tag dangles gently over the edge of her cup. The girl stares off into the distance and a smile crosses her lips.  What is she thinking about?  Perhaps she is remembering a lover from her college days?  Maybe she is picturing a basket of puppies?

Wait… judging from a frame most would describe as thin and a belly that is unmistakably large and rounded, it’s clear that she must be pregnant — she must be thinking of the baby growing in her womb.  Yes.

Her eyes light up as she thinks of the “baby duckling yellow” paint color she and her husband chose for the baby’s room this morning.  “It’s not too masculine, not too feminine, and it will be easy to paint over if we decide to change it when the baby gets a bit older.”  She bites her lip as she wonders how she is going to wait for the next three months to meet her new baby.  She has slipped her calendar out of her purse and is making a list of baby names now.  It’s the same list she and her husband have been coming up with every night before bed.  But she thinks she might have a revelation and “the one” might pop into her head today.

She continues her list.

She is mostly alone as she relaxes in the large open room filled with beds and curtains and chairs just like hers.  Mostly.  She has a number of visitors over the course of the next hour.  Each one stops by to chat briefly with her.  She laughs and talks with them individually.  And then her visitors move on, one by one.

She continues to sip on her unusually large cup of hot tea. Her final visitor is dressed in white and bears the name of her grandmother.  Her hands are full, but with what?  It’s hard to say.  The visitor dressed in white sits across from the girl and then leans toward her for an unusually long time.  She holds what looks like a long, shiny pin or needle in her hand.  Odd.  But when she stands up to walk away, her hands are empty and she and the girl are both smiling.  She now has something pinned to her chest — a flower perhaps?

Just as her name is called she looks at her list.  She is clearly pleased with her accomplishment and is excited to share this new name with her husband.  It was her grandmother’s name.

She slides gracefully out of the chair (well, as gracefully as a pregnant woman can) to meet the woman who beckoned her.  They walk happily down the hall together and slip into a room nearby.  The door closes behind them.

When they emerge, they are smiling and walking again.  The girl is stroking her belly, as if to comfort the baby inside.  She returns to her chair as the lady in white brings her a cocktail with one of those cute little paper umbrellas poking out from the rim of the glass. She relaxes for a bit longer before rising from her comfy chair, bidding adieu to her friends and walking out to greet her waiting husband.

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cancer in my thirties cancerinmythirties.wordpress.com breast cancer 30s cartoon

Cartoon Credit: chibird.tumblr.com

Scenario 2:

I am sitting in a large, sterile room.  Across the way, I see a girl…or a woman, really.  She looks biologically young, but I can tell she has been weathered by experience.  Something tells me that she probably still thinks of herself as a girl in the quiet morning hours when everyone else is asleep.  So I will indulge her and call her “a girl.”  It’s the least I can do.

The woman, uh, girl, is sitting in a reclining hospital chair.  Beside her is a small table where alcohol swabs and some medical paraphernalia sit. She holds a large, lidded Styrofoam cup, the largest one I have ever seen, in her hands.  Dangling on the side of the cup I see a tea bag tag.  She looks at the bit of wisdom the tag has to dispense, rolls her eyes, and takes a sip from her straw.  Odd that she is drinking hot tea through a straw.  Maybe she’s one of those women who don’t want to stain their teeth so they drink their tea and coffee through straws?

Just then a nurse walks over to her and asks her to sign a form stating that she understands the risk of drinking this tea.  WTF?

Well, it’s not your average tea.  It’s tea that has been infused with a radiocontrast agent.  Is it radioactive tea?

The girl stares off into the distance and a smile crosses her lips.  She is thinking of a sandy beach in a warm place far away.  “If this is more cancer,” she thinks, “I am moving to that beach.”

She puts her hand on her protruding belly and secretly hopes one of the nurses will ask her if she is pregnant when she signs the next consent form.  It’s an odd thing to hope for, almost masochistic, really.  She pictures what she would say in response to the question.  “Of course I’m not pregnant.  I’ve been gutted.  Every part that makes me a woman (except the “V” one) has been stolen from me.  I am empty inside.  Dead inside.  And, oh, this?  It’s edema.  My belly is swollen with fluid.  No baby.  I’m here to see if it’s cancer in here, not a baby.  My fate was sealed at 33 when those lumps in my breast were written off as nothing.”

Of course no one asks her if she is pregnant.  They all know the answer.  They all know why she is here.

And she wouldn’t have the guts to say what’s on her mind, anyway.  She wouldn’t want to hurt or bewilder anyone.  She wouldn’t want to ruin anyone’s day.  So she thinks about what she would really say.  “Nope, just fluid.”

She snaps out of her daydream when a second nurse asks to see the port in her chest.  They’ll need it later.

She slips her calendar out of her purse and tries to recall the appointments she has scheduled for next week.  Her fuzzy chemobrain has made it impossible for her to remember much these days.  She soon finds herself drawing seagulls and starfish in the margins.  “Oh, to have my toes in the sand right now and to be anywhere other than here,” she dreams.

She shifts gears and makes a list of everything she needs to do when she leaves.  Her 3rd graders — twin boys — will be waiting for her.  It will be dinnertime.

She is mostly alone as she sits in the large open hospital room filled with curtains on tracks and not rods, hospital beds and hospital reclining chairs just like hers.  Mostly alone.  A number of nurses stop over to check on her progress with “the drink” or to ask her to sign a form.  She smiles and makes small talk with each of them.  And then her visitors move on, one by one.  She continues to sip on her unusually large cup of hot tea.  Through a straw.   That’s probably so she doesn’t spill the giant cup of lukewarm possibly radioactive tea on herself.

Her final visitor is dressed in white and bears the name of her long deceased grandmother.  Nancy.  Her Nanna was one of her most favorite people in the world.  She watched her die a painful death from cancer when she was 8 through 9 years old. “My kids are 8, too,” she thinks.

The nurse sets up a tray with everything she needs to access the girl’s port.

She holds a long shiny needle and asks if the girl likes to hold her breath or if she applied the EMLA cream in advance to make it hurt less.

The girl laughs, “No, no need.  Just go ahead.”  She has been poked and cut so many times it’s not even funny.

The needle punctures her upper right chest skin and enters her port.  Now they will be able to push the intravenous radiocontrast agent through her chest.

The nurse dresses her port with a tegaderm and gauze.  With the little yellow butterfly clip sticking against the transparent tegaderm, it almost looks as though the girl has a flower pinned to her chest.  An ugly flower, but a flower nonetheless.

Just as her name is called, she looks at her list.  She is already tired, but smiles at the thought of being able to sit down with her kids when she is done.

She drags her body from the chair to meet the woman who beckoned her.  They walk quietly down the hall together and slip into a room nearby.  The door closes behind them.

When they emerge, they are smiling faint smiles and walking again.  The girl is doing that thing she does — looking dizzy and as though she is going to hit the deck.  She strokes her sore belly.  The nurse asks her to lie down until she feels better and says that people who receive the contrast through their ports need to wait 10 minutes for observation before they can leave anyway.  The nurse brings the girl a drink.  This time it’s plain cola.  Nothing added.  The nurse puts a bendy straw in the Coke.  The straw wrapper bears the name of a famous medical supplier.  “Yikes, a straw from a medical company!  It probably cost $50,” she thinks.

When her 10 minutes is up, she is so ready to leave that she walks out in her disposable drawstring hospital pants and stuffs her slacks in her bag.  It’s time to go home.

———————————–

So I was sitting in one of those recliner-type hospital chairs drinking oral contrast in preparation for my CT scan when I started thinking about perspective.  Of course the “girl” above is me…

Thanks for reading… Your comments and “Likes” brighten my life…

Grateful Am I…

oopherectomy hysterectomy breast cancer cancerinmythirties.wordpress.com 30s incision liver lab

After not posting for a week, I thought I would put my concerns about poor liver function tests, leg and abdominal edema, and the words of the medical professionals who urged me to “get myself to the Emergency Room” this week aside and return with a post focused on gratitude.

A fellow blogger has honored my little blog with an “Illuminating Blogger Award” and I’d like to take a minute to acknowledge how thankful I am.

Many thanks to http://theretiringsort.com/!

breast cancer in my thirties cancerinmythirties.wordpress.com 30s

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The rules for accepting the award are as follows:

  • Leave a comment on the original award site
  • Share a random fact about yourself:  My dream job would involve saving sea turtles.
  • Choose 5 bloggers to pass the torch to. Here they are:

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1.  http://bornbyariver.wordpress.com

2.  http://travelgardeneat.com/

3.  http://lesleycarter.wordpress.com/

4.  http://keepingitrealmom.com/

5.  http://clanmother.com/

Thank you, “The Retiring Sort!”  Thank you to the bloggers listed above (whose blogs brighten my days).  And thank you to everyone who takes the time to read and follow my blog!