Tag Archive | death

$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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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.

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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…

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DP Challenge: I Wish I Were… Going to Live to See My Kids Grow Up

 

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I’m a little late to the party, but I just discovered The Daily Post and the blog’s weekly challenge for bloggers.

This week’s challenge is to finish this sentence:  “I Wish I Were…”

Thirty years ago I would have said, “I wish I were a farmer or a doctor or a scientist.” Twenty years ago I would have said, “I wish I were destined for greatness.”  Ten years ago I would have said, “I wish I were someone who could change the world in a positive and enduring way.”

Today I would say, “I wish I were going to live long enough to see my twins turn eighteen.”

Of course I know it is still possible.  “They” say anything is possible.  I just don’t think it is very likely.  No, I’m not one of the women on those TLC shows about ladies who have their first baby at age 70.  And, no, I’m not someone who believes in the Mayan Calendar doomsday prediction for next month.

I am just a mom in her thirties who was diagnosed with Her2 positive Stage IIIc breast cancer when her little boys were in kindergarten.  I now realize that to these young boys, I am a doctor, a farmer and a scientist.  To these little boys, I am great.  And if I can just stick around long enough to help them grow, I will be changing the world in the most positive and enduring way possible…

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*If you’d like to take the challenge yourself: http://dailypost.wordpress.com/2012/10/29/weekly-writing-challenge-i-wish-i-were/

I Want Out… Right?

As we were driving home the other night, I kept replaying the gas station scene from The Bridges of Madison County in my head.  You know, the one where Meryl Streep’s character is sitting in the car while her husband is pumping the gas.  She sees Robert Redford, the man who has asked her to run away with him.  Redford is also the man with whom she has had an affair and with whom she could have a completely different life.  She reaches for the door handle, almost prepared to pull it and to run out on her life to begin anew.  Almost. She can’t do it.  With tears in her eyes — because she knows what she is giving up — her hand drops from the handle when her husband returns to the car and they drive away.

It has been a long time since I last saw the movie and there were parts of it I didn’t agree with like, um, the adultery…  But that scene in the movie has stayed with me.  For me, though, Robert Redford would not represent a man I’ve slept with (because there haven’t been any since my husband), but he would represent an opportunity for a new beginning, a different life.

This is an odd topic for me to write about because I would never have expressed these thoughts before.  It’s kind of comical, almost like I expect angry black crows to fall out of the sky and to begin attacking me or that I think a fiery explosion might wipe  my whole family out in an instant, simply because I’ve allowed myself to wonder what it would be like to have a life that isn’t so difficult and, dare I say it, painful.

I never had these thought before.  I grew up in poverty and was teased for it right up until high school started.  I experienced important and traumatic losses at early age.  I grew up without a Dad — after living with a Dad who was abusive and drunk most of the time.  And blah, blah, blah…  The point is, I have never been a stranger to struggle or compromise or death or pain or loss.  But I never questioned my life or my choices or how other people’s choices affected my life.  I never looked at any of it with regret or disdain.  It was my life, for better or worse.  If there was something I didn’t like about it, I would work hard to change it.

I didn’t have any real regrets…  Until I was in the midst of a chemo combo that made me feel like I was inches from death.  I was so sick and needed to be nurtured and cared for and needed a partner to hold my hand — or, at the very least, someone who didn’t feel the urge to fight and argue with me or the kids all the time.  And then when I had the bilateral mastectomy and the hysterectomy, I tried to pretend these surgeries didn’t bother me and that I could roll with the punches.  And I did.  I just handled the pain and the immense sense of loss that accompanied losing these body parts, especially to cancer and especially at such a young age.  But inside I longed for a spouse who would hug me and tell me that I was still pretty, still a woman.  I needed someone to tell me that he loved me.  I kept thinking that for years I had weathered all of the ups and downs of our marriage, his deceit, his mood swings and so much more — and all I really wanted were a few kind words and to be hugged.  But I guess some things are just too much to ask for…

So as we drove home the other night and I thought about how stressful the previous 36 hours had been because of his bad temper and his unpredictable mood swings, I looked at the door handle and thought, “I am done with living this way and I want out.”  I wanted out with all of my heart…well, almost all of my heart.

But I couldn’t do it.  Especially when the only place I wanted to run to (other than Hawaii) was my home… to change the locks.  Now it would be just plain silly to jump out of my home-bound car to run home.  Right?

So I am still here…

With the same locks…

With the same husband…

Thinking about what it would be like to be dealing with cancer if I weren’t married to someone who was rooting for the cancer to win instead of me.

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4 Months…

So I saw my oncologist today for my 6-week check-up.  I was expecting it to be a nice little ‘here’s what’s happening’ and ‘goodbye & congrats’ session.  It pretty much was. I went through a rundown of my symptoms and she asked me questions and updated my profile in her computer.

Then she told me she had seen my abnormal EEG results and asked what my neurologist was doing as a ‘next step’.  I told her about the MRI I had at the end of last week and said that I had an appointment with the neurologist tomorrow and that I expected to discuss the results with her then.  Since my oncologist and neurologist share a hospital and a computer system, she was able to pull up a 1 sentence blurb taken from the full report.

It mentioned a brain lesion.  But I guess that could mean a few different things — and that it doesn’t necessarily mean that it’s a brain met (metastasis).  But thinking of this in the context of the abnormal EEG, my mind can’t help but “go there.”  For more detail, I’ll have to wait for tomorrow’s appointment.  I kind of wish she hadn’t brought it up.  But I’m sure she wanted to see what the preliminary report had to say at least.  You see, she was headed out on maternity leave after my appointment today and I won’t see her again until February.

So we finished the appointment with a quick exam and a discussion of who will be covering me and what her plans are for me during her leave.

I hugged her, told her (honestly) how happy I was for her, and handed her a card and a wrapped box containing a lovely little pink dress, a dress I had actually purchased for the baby girl I was hoping to have before all of this began.  Of course I did not share this last bit of information with her.  Nor did I not mention that she had become a part of my routine and that I am grateful for her role in killing my cancer.  And I certainly did not tell her that I will miss her while she was away.

And I did not mention the “what if” that crept into my consciousness as we hugged and I realized that I would not be seeing her for 1/3 of a year.  But I knew it was there.

I thought about a couple of women I had come to “know” through their posts about breast cancer.  They both learned that their cancers had returned a couple of months ago.  But they were still hopeful.

And now they are gone.  They died.  A few months ago they thought they were doing fine.  And mere weeks later, they are gone.

I wish I could say these lovely women were the first people I had heard of this happening to.  The first people who have had their cancers return or progress this quickly or aggressively.  But, sadly, I cannot.  Not at all.  You just never know with this disease.

I try not to think about the possibility of this happening in the context of my own life/death.  And most of the time I don’t.

But I am only human.  And at times like these, at times when I hear of sudden losses and the fragility of life hits me like a slap in the face, or when I can’t help but wonder if maybe that nagging pain or that headache that won’t go away is “something,” it is difficult not to let these thoughts creep in in the quiet space of a dark night.

As I walked out to schedule my next appointment, not with the oncologist I had come to trust and rely upon, but with one of her colleagues, I thought about how much could change in the 4 months she would be gone.

Of course a great deal will be changing for her.  She will be bringing a new life into this world, expanding her family, and doing and experiencing all of the things that are associated with that.

And I… Well, I will be trying not to die.

Happy Waving Guy

Easter Cupcakes 2012

Coming home from an oncology appointment one day, we were driving down the busy main street of our town and I noticed a man walking by the road.  He kept a good pace and carried his head high.  He was tall and slender with a shiny bald head, but the first thing I noticed about him was his smile.  He bore a gigantic grin, one reminiscent of Alice’s Cheshire cat, and he waved to us as we drove past.  My return wave was a reflex.  I looked at my hand and could feel a smile pulling up the corners of my mouth.  Here I was waving at this strange man who was obviously a crackpot.  And I’m sure that I, waving and smiling with my shiny bald chemo head, looked like a bit of a crackpot, too.

The weeks went by, and after each appointment or long day of chemo, I looked for “Happy Waving Guy” (as I affectionately named him).  And I almost always saw him.  I began to wonder who this man was and if he spent his days walking back and forth down the road cheering up the passersby.  You see, it wasn’t just me he waved at.  It was EVERYONE.  Every car that passed along the busy road would get a smile and a wave.  And, to my surprise, it wasn’t just me who returned the wave.  It appeared that most everyone returned his wave or honked their horn or did something of that sort.

It came to be that I expected to see him after a crappy day at the Cancer Center  or the hospital.  I expected his smile and happy wave to give me a little lift.  So one day when I was terribly sick and felt like I couldn’t make it through one more treatment, we pulled into the parking lot “Happy Waving Guy” was walking by and I shouted to him.  I remember thinking, “Who’s the nutcase now?”  But I didn’t care.  I wanted to meet this man and to thank him.

He was so pleased that we stopped and that I was grateful for what he was doing.  He was out there every day, walking and waving and smiling, and trying to bring a bit of happiness to everyone who passed.  He wasn’t crazy, he wasn’t a crackpot.  He was a humanitarian.  He said that not everyone was as fond of his activity, but that the people who were made it worthwhile.

It has been 2 years now since I first met “Happy Waving Guy” a.k.a. Bill.  He continues to elicit smiles from many of the people who drive by him on his daily walks.  We keep in touch via email and he has shared a copy of his book with me and has even invited us into his home.

I believe it was one of my kids — they don’t hold anything back! — who asked him if he was always happy.  While I don’t recall his words exactly, his response went something to the tune of ‘if you act like you are happy, you may just get there’.  I know I’m paraphrasing and I may have it all wrong, but there is a lesson in there.  If you exude positive energy, some of it is bound to stick — or to come back to you, at least.

I try my best to live by this philosophy and recently read the post of another cancer patient who is trying to do the same, so I know I’m not alone in my desire to be happy despite the pitfalls of life on this slippery slope.  As I await the results of the MRI I just had, I am trying to be positive and have vowed to continue to do my best to see the joy in each day, come what may.  Of course having a positive attitude doesn’t always help or work, and some days I think the theory is a load of crap.  But most days I think it is certainly worth it to try.  At the very least, it doesn’t usually make things worse — and some days that’s good enough!

Cancer and Cockroaches

So I have been having these dizzy/fainting spells and an episode or two that looked like seizures.  My neurologist wanted to do an MRI when I saw her last week, but I told her I didn’t think it was necessary.  So she opted for an EEG.

I had the EEG early Thursday morning.  It was pretty simple.  They scrubbed areas of my scalp and affixed leads.  Then they wrapped my head up with a gauze bandage to ensure that the leads wouldn’t move during the test.

I lay down in a hospital bed while they tested me with a strobe light, had me do a hyperventilation test, and then waited as I tried to fall asleep.

When I was finished, one of the technicians tried to wipe the blue gel out of my hair.  She told me that I could go to clean it out in the bathroom since my husband and son (home from school because he had a stomach bug) were coming to pick me up and we were going on to other appointments.  I opted to just skip the freshening up and walked out to the car to find my hair sticking up in places, with a visible sticky blue gel helping to create a familiar look for me–“the disheveled patient”.

The person conducting the EEG wished me good luck with everything and said the results would be forwarded to my neurologist next week and that she would likely call me after that.

I assumed the test results would be fine–and that I wouldn’t hear from my doctor until my next appointment with her in a couple of weeks.

But when I saw the hospital’s number in the Caller ID and then heard her message on Friday, I wondered how she had gotten the results so quickly.  She said that she had my results and that she would try to call again.  So I called her office, let her know that I would be home for the next hour (before heading to the cardiologist).  They didn’t expect her to get back to me that day since it was already late in the afternoon, so when she called back 10 minutes later, I was a bit concerned–though the bigger part of me still thought she would say everything was fine.

When the neurologist told me they found an abnormality on my EEG, it didn’t sink in right away.  She didn’t go into too much detail, but she said that they found “something” in my left temporal lobe.  Especially given my cancer history, it is troubling.  The concern is that the cancer has spread to my brain.  She said that she would order an MRI with contrast–and that I couldn’t object this time.

If this is metastasis to the brain, I will be so ticked off.  I made a deal with the cancer in the beginning.  Stay away from the brain and… well, I forget what the cancer was supposed to get out of the deal.  This arrangement reminded me of when I moved into my dorm room during my first semester at the University.  It was a school filled with many well-off kids (though I was there solely because of scholarships and students loans), so you can imagine my shock when I saw a couple of cockroaches emerge from my roommate’s television during that first week.  It wasn’t long before they took hold in the room.  I was dismayed, but made a “deal” with them.  “You can have the rest of the room, but stay off my bed and my desk,” I pleaded with them.

Things were going okay as I waited out the days until the exterminator was supposed to come to our dorm room.  Everything changed when I came home after a late night at the chemistry lab.  There they were on my desk, even on the phone, and darting through my photo frames.  It was ridiculous, but I was angry because the roaches had violated our agreement.  I called and requested that the exterminator come sooner and when that didn’t work, I actually moved to a new room where I never saw another roach.

I wish it were that simple with cancer…  That I could just move down the hall and never have to worry about it again…  Alas, it is not that simple.

Spread to the brain has been one of my biggest fears since my diagnosis 2 1/2 years ago.  I watched my grandmother die a painful death from brain cancer when I was a little girl and the experience scarred me for life.  She was one of the most special people in the world to me and she died when I was just 9 — a year older than my twin boys.

One of my biggest fears since that traumatic period in my youth was that I, too, would develop brain cancer and suffer the same fate as my grandmother.  Of course, if this is actually a tumor, it is likely a spread of my breast cancer and not a tumor that originated in the brain like my grandmother’s was presumed to be.  But the effects would be essentially the same, especially given it’s location in the left temporal lobe.  If my children have to watch me suffer in the way that my grandmother did, I think I would have to rethink my plan of fighting until the end.  I don’t think I could leave them with with the same images and experiences that have haunted me my entire life–because I know how it will end.

I hope it’s just a mistake and I hope I won’t have to worry about that…

 

*If you like this post, please visit this link & click “Boost” on my page. Thank you.  http://www.breastcancerblogs.org/blog/24423/cancer-in-my-thirties *

April 13, 2010 a.m. – Today is the Day

I have my appointment at the breast center this morning.

My sons’ birthdays are tomorrow.  (They are twins.)  I am thinking about a dear friend who died 2 days before the boys’ first birthdays, so five years ago yesterday.  She treated me as a daughter throughout my awkward younger years and until her death.  Her actual daughter was one of my two very best friends, so she often shuffled us from here to there and picked us up from school when we needed a ride.  This was almost every day for a time because her daughter and I ‘stayed after’ for numerous clubs and activities and sometimes just for a chance encounter with the boy we both liked.  [I am smiling as I recall this last bit and how silly we were!]  She never complained about having me in her home or minivan so often.  She said she enjoyed talking to me.  And I felt the same way.  She became close friends with my mother—they were the same age and both warmhearted gardening Englishwomen with gardening English mothers who were displaced from their homelands.  We remained very close.  I even lived with her for a year when I left college.  Oddly enough, the first house I bought was a side-split almost identical to hers–and just around the corner from her–and was a place where she planted some of the lovely lilies she bred.

She was diagnosed with breast cancer in her 40’s.  She was forever changed by it.  And not in the good way people sometimes talk about, but in a way that makes my heart ache for her.  It was painful and traumatic.  And at her young age, isolating, I’m sure.

We should have been celebrating together at my sons’ first birthday party as planned that Saturday five years ago.  Instead, I was at her funeral.

I glanced at some of the silk ribbons hanging on the closet door on my way downstairs this morning.  She had earned the awards for her prize-winning rabbits.  I could hear myself asking her to help me handle whatever happened today.