Tag Archive | illness

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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cancerinmythirties.wordpress.com breast cancer thirties 30's 30s color weekly photo challenge daily post

cancerinmythirties@wordpress.com cancer breast cancer thirties 30s 30's twins

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.

The Devil is in the Details…and my Bed

Snapped this photo of a piece at the school district art show.  Not sure if I agree with the sentiment, but the flames are fitting at least!

Snapped this photo of a piece at the school district art show. Not sure if I agree with the sentiment, but the flames are fitting at least!

What’s that old saying, “The devil is in the details?”  That phrase has cycled through my head many times in the past couple of weeks.  Followed by silent conversations about how that’s not the devil’s only hangout.

The week or so before last was, to put it mildly, a week from hell.

The best way for me to explain what I mean is to just tell you what has been happening.

On Saturday, June 29, I asked my husband to come to bed at about 3:30 a.m.  This is around the time when he normally decides go to bed.  He is either on his tablet surfing the Internet or playing video games until the early morning hours.  Every night.  I honestly don’t mind the video games.  I really don’t.  But I don’t have the same feeling about the tablet.  When you are repeatedly told that “this tablet and the Internet are my life,” it makes it hard to see it coming into your bed at 3:30 in the morning when you are not feeling well and would just like to get into bed with your husband at a normal time and feel like there isn’t something more important in there between you.

This night was no different.  Except that when he brought the tablet up and proceeded to get into bed with it, I asked him if we could just have one late night (early morning) without it.

A few seconds before, he had taken the clean socks that were sitting on the bed half folded and shoved them all onto the floor.

As I bent over to pick them up and put them in the basket, I made the “Can we just have one night without it?” comment.

A split second later, I was seeing stars.  He had taken his pillow, and with a significant amount of force, was swinging it back and forth at me, smacking me in the front and back of the head.  The force was enough to knock me down.

My ears were ringing and I was in shock as I stood back up.

He looked at me angrily as he climbed into bed, turned the tablet on and put his headphones on, cursing at me all the while.

I was shaking as I thought, “It’s now or never.”  You see, I had decided a few days before that the next time he hurt me or one of the boys, I would get him out, come hell or high water.

I would have welcomed a flood that night.  But it was hell that came instead.

I have been asking him for as long as I can remember to leave when he flies off the handle.  But he always refuses, stating that it is his” fucking house” and that he is not going anywhere.   We bought the house together after both contributing financially because I had a pretty good job as well.  I worked really hard and had been saving since I was a teenager.  And in the past few years since he has been out of work and we have been running a small business together, it has probably been me who does the lion’s share of the work.  And, honestly, ever since his job loss and my cancer diagnosis, we have been swirling in debt together.  So even he, with his nasty comments, can’t convince me that the house is “his.”

Normally, I beg him to just let me stay in the house with the kids until I die, and to be left in peace with them.   I tell him I will take care of the mortgage.  And then he can have it when I’m gone.  Of course I don’t know how much time this will be, but given the details of my diagnosis, I know it can’t be forever.  So I think it sounds like a good deal for him.  I pay the mortgage and take care of the kids.  And then he gets it all in the end.  And no one has to know about how he’s been treating us.

But he says he would never let this happen.  That he’ll make sure I get nothing.  And he will not leave the house.  If anyone is to go, it will be me who has have to get out of his “fucking house.”

I know he feels he can wait me out and that he’ll get the house in the end anyway when I’m gone.  And I think he believes that the sympathy would end for him if he were to walk out the door.  He knows that no one would think he’s the doting and kind husband he has tried to lead them to believe if he were to leave and people were to know the truth about how he treats a wife who is not well and who has been through more surgeries and cancer treatments, complications and crap than I’d care to recount, even in a cancer blog.  So he has never left before.  Just created a path of destruction.  And I kiss his behind the next day because I just want peace.

But this night I was bound and determined.  I told him that I was done with being treated this way and with having the boys be treated this way.  I said that given what I had been through to just simply stay on this earth, I shouldn’t have to endure so much stress, or to live with the knowledge that the person I married doesn’t think I’m worthy of his kindness.  And that if he didn’t think I deserved at least this much, then he would do us all of a favor if he just left.  I told him I wouldn’t tell anyone what he had done if he just left.  And when nothing worked, I threatened would call the police if he didn’t leave.  He told me to go ahead, not believing that I’d actually do it.

After a couple hours of pure hell, I decided that if I didn’t do it now, I never would.  I told him that if he wasn’t willing to change his behavior, I had no choice but to call and I went for the phone.

He yelled, “If it shuts you the fuck up, I will go.”  He grabbed a bunch of things, including the tablet, and said he was taking the better car and leaving our older minivan with the flat tire and a mountain of problems behind.

He had been swearing at me the entire time and telling me how I was a bad mother and how my kids were going to be ruined by me.  He yelled all of the things that he knew would hurt me, along with plenty of “fucks.”

He said that I would get nothing, save for the ocean of debt we are swimming in.  He would take responsibility for none of it and would make sure I suffered.

And then he went outside to move the cars so he could get out of the driveway.  When he came back in, I started to back down, afraid of what would come next.  He continued to be nasty to me.  So I said that this had started because I made a normal request for the tablet to not come into our bedroom for that night.  And that, like every “night,” it wasn’t really night, but morning, when he was finally ready to get into bed with me.

He began to flip out all over again, shouting that he was the “fucking normal one” and that I had no right to ask him for that.  He told me to “Shut the fuck up” and threw the minivan keys at me and stormed out.

It was 6:00 a.m. when he finally left.

My mother had been staying with us for a few days at that point because she was in transition from her own divorce.  She heard everything from the next room (and from upstairs when we went downstairs), so when he left, she came to see if I was alright.  She said that she had wanted to call the police and had her cell phone in her hand the whole time.  She said she didn’t because she knew I would be upset if she did because she knows how I have tried to protect him over the 20 years I was with him and how I never thought I deserved the kindness plenty of observers over the years said I did.  I always stood by and protected him and his image.  And she knew that I wouldn’t have the heart to turn him over to the police that morning.  But she was appalled by the things she heard him yelling when our boys were just down the short hallway asleep (for part of the time, anyway).

I was sobbing.  And I never sob.

It felt horrible.  I felt horrible.

I was physically sick and just riddled with the fear of what his retaliation would be.  It was awful.  Almost as horrible as learning that I had cancer.

I will add more as I can.  Or maybe not?  I don’t know how much more I can bear.  I gave in and he is back in the house.  He vacillated between intimidating me and promising things would be so much better.  In the end, I couldn’t take the fear of what would come next any longer — I was physically ill — vomiting and shaking — and just felt so completely broken.  Plus I felt that I could give him one more chance.  I always like to give people the benefit of the doubt and despite everything, I wouldn’t have felt right about not giving him another chance when he made it sound like he was sorry and would change.  I have always been loyal to a fault.  [I still see the doctor who told me I was too young for breast cancer and whose office wouldn’t see me the next year when I’d lost my health insurance and was so sick because the cancer had now engulfed my breast.]   I felt like I had to give him another chance, despite what my gut was telling me.

It took a great deal of wrestling for me to share this or anything like it here, but I think telling you is the right decision.

Thank you all for reading and for helping me get through this without even knowing that you were…

National No Bra Day & Breast Cancer Awareness Month — OR — Please Put that Pink Can of Soup Down & Put Your Bra Back On!

My “Where I’ve Been” post is still forthcoming, but in the meantime, I realize that I missed the opportunity to post on “National No Bra Day.”

I am reposting an article I wrote back on the unofficial No Bra Day during Pinktober (October — Breast Cancer Awareness Month).  The “official” fake holiday was actually yesterday, July 9th.

I see that you left a number of lovely comments on my M.I.A. post.  I will respond, but wanted to say “thank you” from the bottom of my heart in the meantime.  I am also looking forward to catching up with your blogs and all I have missed in the past couple of weeks.

My warmest thoughts & thanks are with you all…

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Peter Griffin / Family Guy "What Grinds My Gears" Episode

Peter Griffin / Family Guy “What Grinds My Gears” Episode

I am not a ranter by any means and I have been pretty quiet about “Pinktober” and what has come to be known as “Pinkwashing” in breast cancer circles, but seeing October 13th advertised as “National No Bra Day” and as a “fun” way to support people with breast cancer has pushed me over the edge.

Are you kidding me?  How on earth could a day where girls and women are encouraged to walk around with their nipples poking through their shirts be “supportive” for women who are living with or who have died from breast cancer, or who have managed to ‘complete’ the arduous treatments and disfiguring surgeries required to put them into remission?

I think the answer is simple.  It is not.

Like so many women–and men–who have faced this disease, I have lost my breasts to cancer.  Though I had a terrific surgeon, it was a physically and emotionally disfiguring surgery.

The cancer had gone so deep and was so extensive on my left side that it was at first inoperable.  Even after months of chemo, my surgeon took as much tissue and skin as possible and went deep into my axilla (underarm area).  The cancer had metastasized to my lymph nodes and had invaded them to such a degree that they broke open to allow the cancer cells to go beyond the walls of the nodes.  Because of how invasive the surgery was and of how much nerve damage, etc. resulted, it was not only extremely painful then, but continues to be a source of pain and phantom sensations that affect my entire upper torso even today.

I required over a year of physical therapy just to be able to raise my arms again and I still don’t have full function or range of motion.  And, because of pain, swelling, conspicuous compression sleeves and gloves, I am constantly reminded of the lymphedema that resulted from the surgery and loss of my lymph nodes.  Oh, and the life-threatening infections that forced a couple of hospitalizations and four months of massive doses of antibiotics this summer (almost 2 years after my original surgery), are also a little reminder of some of the things that the bilateral mastectomy and lymph node surgeries have left me with.  And there is so much more…

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So the thought of seeing bra-less women flaunting two body parts that I have lost to cancer — more than I already see this on a regular day — does not feel all that supportive.  In fact, it feels quite the opposite.

I consider myself to be an open-minded person.  I do my best not to judge others or their beliefs and ideals.  I have a pretty good sense of humor and am usually the first to poke fun at myself.  And I make light of breast cancer and my struggles, treatments and their side effects, lack of breasts, fear of death, etc. fairly frequently.  It is how I cope.  But, given what I have been through, I think I have earned the right to joke and make light of how this terrible disease has affected me.  But if you haven’t been there or taken care of someone who has been there, then you should think twice before you publicize a day that jokes about putting the first body parts we usually lose to this disease “out there” on display even more conspicuously and then labeling it as an activity that helps our ’cause’.

We live in a society that makes a huge hoopla about breast cancer while at the very same time trivializing the seriousness of the disease.  How can we be so contradictory?

While I am beyond thrilled that breast cancer is no longer a taboo issue and that people are talking about it, the commercialism has gotten out of hand.  There is nothing pink and rosy about breast cancer, yet it has been pink-washed to death.  It is a serious disease that kills.

And while I do think we need more awareness and education (about metastatic disease, about how young women CAN develop breast cancer, about how women (young and old) DO die from this disease, about the importance of research, etc.), I don’t think we need the kind of awareness that buying a jar of salsa with a pink ribbon on it brings.  While I hardly ever see “awareness” products addressing the topics above, I can’t go anywhere without seeing pink products.  Heck, I just have to look out of my front window to see giant pink garbage totes.  Pink-Cart---cut

The stores are filled with pink as companies try to make a buck off breast cancer.  If you look carefully at these products, you’ll find that some of them don’t even donate a cent to breast cancer awareness, support, research, etc.  And oftentimes those that do make a very minimal donation–and not always to organizations/programs where the money is well spent.

What is most unfortunate is that well-meaning people are willing to buy pink products, even pay a little extra, because they think they are helping to do something to “cure” breast cancer or to provide “hope” to breast cancer patients.  Why is this sad?  Because those dollars spent on pink flowers, pink shirts, or a pink box of crackers or spaghetti sauce could be going to research, our only real “hope” of beating this horrible disease.

So please put your bra back on, put down those pink garbage bags (unless you really like pink that much!), that pink “awareness” pepper spray keychain, and that pink breast cancer “awareness” vibrator and dildo (yes, I’m blushing and yes, these are real things that their merchandisers say will “help you raise breast cancer awareness” — though they are shipped discretely in plain, unmarked boxes so no one knows what you purchased) and send a few dollars to an organization that devotes their fundraising dollars to research.  You just have to do a bit of homework or read the labels on those pink items to see where your money is actually going.  Or, if you don’t like homework, here are a couple of great ones:

StandUp2Cancer.org: Our mission is to fund collaborative, translational cancer research to bring treatments from the bench to the bedside faster, and save lives now.  Since Stand Up To Cancer was founded in May 2008, we have granted $161 Million Dollars to ten Dream Teams of scientists and researchers, one international translational research team and 26 high-risk, high-reward Innovative Research Grants.  100% of public funds go directly into research grants. A portion of the funds that are raised from major donations and third-party fundraising go towards administrative expenses and overhead.

Metavivor.org:  From support groups to funding vital research, our programs sustain the power of hope.  Passionately committed patients ourselves, we rally public attention to the urgent needs of the metastatic breast cancer (MBC) community, help patients find strength through support and purpose, and make EVERY dollar count as we work with researchers to regain longevity with quality of life.

…or consider a group that helps actual cancer patients and their families cope with their illness.  For example:

CancerIsAJerk.org  — This is a charity my dear friend jme set up to help families touched by cancer.  You can make a financial donation  or  if you’d like to have a tangible something to wear to show your support, you can purchase a “Cancer Is a Jerk” t-shirts with all proceeds going to help actual families touched by cancer.  You can also contact jme through the charity if you’d like to sell shirts as a fundraiser with all proceeds going to benefit cancer family applicants in general OR designate a specific family of your choosing.

And don’t underestimate the value of local organizations.  My local Breast Cancer Coalition is a perfect example.  The Breast Cancer Coalition of Rochester‘s mission is to make the eradication of breast cancer a priority through education and advocacy; to empower women and men to participate fully in decisions relating to breast cancer; to provide support to those coping with a breast cancer diagnosis; and to focus research into the causes, prevention, treatment and cure of breast cancer.

Also local for me is The Karen Carson Crane Foundation.  Founded by Karen’s siblings after she died of breast cancer, the mission of the Karen Carson Crane Foundation (“the KCC Foundation”) is to provide support and financial assistance for individuals affected by breast cancer; to encourage breast cancer patients to have the strength, courage and passion to overcome their disease; to support local organizations that assist breast cancer patients; and to donate a portion of its fundraising dollars to organizations that research and promote alternative cancer treatment methods.  

There are many other great organizations and groups out there — these are just a few.

And if you can’t help with a financial donation, consider volunteering your time or talents.  Perhaps to local cancer patients — bringing a meal or knitting a chemo cap or scarf, or sending a cozy blanket are examples of ways to show your support.   I remember when a small box of craft supplies was left on my doorstep when I was first going through chemo — what a gift that was — my kids loved it and it kept them occupied for a little while when I was really ill!  Or consider volunteering at a local cancer center or for a local American Cancer Society chapter.  There are many ways to show your support that don’t require $$.

And, of course, don’t forget to go for your regular mammograms and to feel your breasts when you can (and report any changes to your doctor) because doing these things IS important.  It — what I can loosely call a self-breast exam (but really just washing myself in the shower) — is how I found my own lumps, about 17 years before I was due for my first mammogram (according to the recommended screening age back in 2009).  If I had ignored my lumps and waited for that first screening mammogram, I can safely say I would have been long dead!  So please pay attention to your body and your breasts.  While the vast majority of lumps are benign, I still believe it’s always best to bring your breast changes to the attention of your doctor.  Thanks for reading…

I will leave you with a picture that I think is my best advertisement for National No Bra Day and Breast Cancer Awareness Month.

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5 Days Post Bilateral Mastectomy and Complete Axillary Lymph Node Dissection (ALND)

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Side note:  The ACTUAL National No Bra Day is July 9th annually.  Someone had the great idea to do a braless day during October — Breast Cancer Awareness Month — to support “the cause.”  Adding insult to injury, the day they chose — October 13th — is actually the one day out of the whole year designated for Metastatic Breast Cancer Awareness.  Sadly, I’ve seen far more No Bra Day awareness advertising circulating around the web than I have Metastatic Breast Cancer Awareness Day info.

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The Dream

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I realize it has been over a week and a half since my last post.  Since I am too tired to muster the energy for a proper post, I thought I’d leave you with a short story — a dream, really.  

I promise to be back soon.  School ended for the boys on Thursday after 4 half-day sessions.  And the weekend was filled with their soccer games and errands in 90+ degree temperatures.  I thought being out in the heat  and hot sun all weekend would tire them out, but it’s actually me who seems to be having trouble!

Thanks for understanding.  I’ll “see” you soon…

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The Dream

Nina awoke in a panic.  She had been up well into the early morning hours again.  The last time she recalled looking at the clock, the bright blue numbers read 5:13 a.m.  She remembered getting up to go to the bathroom — again — and that was it.  She must have fallen asleep soon afterward.

More often than not, this was about the time when her eyes would finally close for the last time each night.  She was in pain all day, but the nights were in a class by themselves.  It was as if she kept herself so busy throughout the day that she managed to distract herself from what her body was feeling.  But at night there were no distractions.  It was just her body and her thoughts.

And she didn’t like either these days.

When sleep finally came, it was a deep sleep.  The kind that encourages dreaming.  She didn’t usually remember her dreams.  She was okay with this because there had been times in her life when her dreams had come true — and they were never the “good” dreams.

She thought of this as she remembered the dream she’d just had.  When she slept that morning, she found herself running from an assailant wearing a dark sweatshirt and black sneakers.  She was out of breath and panting as he came upon her.  He had the same shape as her husband and the same dark hair.  She couldn’t see his face.  But his scent was familiar.

She saw something shiny in his hand.  It caught the light from the streetlamp just right.  She recognized the object now.  It was a long kitchen knife.

Panic set in as she tried to run faster.  But it was too late.  He grabbed her from behind.  She tried to scream.  Tried and tried.  But no sound emerged.

She was still straining to scream when she woke suddenly.  Her heart was racing.  She was dripping with sweat and shivering because she was so wet that she was cold.  It had seemed so real.  And even in her groggy state she realized that she’d had this “dream” many times before.

She rolled onto her back and saw her husband’s dark eyes staring at her with a look of disdain.

“You woke me up,” he said, angrily.

She apologized and started to tell him that she was having a nightmare.  He cut her off and said he knew this because she was whimpering and saying “No” in her sleep.

She said “Sorry” again, but he didn’t care.  He never cared.

When Maroon 5’s “Love Somebody” interrupted her pathetic apology, she was glad.  It was 7:30.  Time to get the kids ready for school.  Time to put her game face on.

Her husband rolled over, positioning his back to her.  She caught a whiff of his musky odor.  And it was then that she recognized the scent from her dream…

Weekly Photo Challenge: “The Sign Says” I Have Cancer

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*WARNING:  The last image on this page is pretty disturbing — and gross — so be careful as you scroll down the page if you don’t want to see it.*

I am writing this post in response to The Daily Post’s Weekly Photo Challenge topic “Signs.”

While I know this isn’t what Sara at The Daily Post had in mind, taking the post in this direction is what feels right to me.  Rather than compiling a handful of hysterical sign photos (I do have a few!), I have decided to abandon my first inclination and leave funny at the doorstep.  Instead of happy and light, I’ve opted to share a few photos that capture my physical state just months before my diagnosis of Stage 3C breast cancer.

Now, before you run off in the other direction, I’ll tell you that I won’t go as far as posting photos of my breast with its visible lumps.  But I will post more benign shots that really were not benign.

I was 33 in these photos and had lost about 10 – 15 pounds without changing my eating or exercising habits [I didn’t exercise].  It may not show, but I was thoroughly and completely exhausted.  I had been tired before, but this was the first time I would hit a wall where I couldn’t, regardless of how hard I tried, force myself to keep going.

I was so sick.

I had infection after infection.  Bronchitis.  Pneumonia.  Eye infections.  Etc.  Etc.

My lymph nodes were swollen.

My skin was dull and grey.  I was breaking out in rashes and developed acne-like bumps.  I had sores in and on my mouth.  My lips were peeling and cracked, swollen and often bloody.

I had been growing my hair for ages so I could again donate to Locks of Love, an organization that provides wigs for kids going through cancer and chemo (and other serious illnesses). But I was afraid they wouldn’t accept it this time because it was so dry, dull and lifeless.  And it was falling out.

And I was falling.  On one of the occasions when I blacked out and fell down the stairs, I hit my back and head so hard that I ended up in the emergency room.

I was experiencing a constant tingling throughout my left breast, similar to the “let-down” feeling I remembered from nursing my twin boys.  But the pain in the breast, from the surface to somewhere deep inside my chest was just as concerning.  The pain in my armpit was also making me wonder.

And there was more.  But why bore you with the details?

I knew something was gravely wrong.  And I knew that if I didn’t find out what it was soon, it would kill me.

And I was right.

While these photos are not pretty or well done, they are real.  They may not look like much if you didn’t know me before all of this, but for me these photos illustrate clear signs that cancer had engulfed my breast and lymph nodes and that it was trying to go further.  I just wish I had recognized them for what they were.  I wish I had paid attention to the signs sooner.

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The two photos that follow were taken on Christmas Day, 2009, just under 4 months before my diagnosis.  I was so ill and had been for a while.  And other than pneumonia and very swollen and sore lymph nodes and these recurrent infections in my mucous membranes, etc., no one knew what was wrong with me and why I couldn’t leave these infections and illnesses behind.  These were two of the rare photos I was in that Christmas:

breast cancer thirties 30's 30s death illness young photos

Just a warning:  the disturbing photo is coming after the photo below.  Last chance to turn back!

breast cancer thirties 30's 30s infections young illness death stage 3c

You probably thought I would share a photo of my breast or axillary lymph nodes here, but I promised I wouldn’t do that to you!  The disturbing photo I am sharing is of my eye, my skin, and my swollen (and bloody — though you can’t see the blood here) lips.  Both of my eyes looked like this quite often near the end.  They were as painful as they looked and were infected over and over again.  I knew something was seriously wrong with me because this wasn’t normal.  But no one sought to get to the bottom of my symptoms — I’m sure having no insurance at the time had something to do with this lack of action.

breast cancer thirties 30's 30s young eye infection infections red bloodshot lips

Thanks for making it to the end.  Even though this photo montage isn’t pretty, I think it is important to my story and I appreciate everyone who was willing to see it through.

And I promise that the next photo challenge post I do will be filled with beautiful images of people or places I hold dear…

If you’d like to participate in The Daily Post’s Weekly Photo Challenge, just click here.

Palliative Care at 30-Something : What Does it Mean? (Part II)

This is a long overdue post, so I will have to backdate it…  I’ve actually been back two times since!

Photo Credit: pcdsys.com

Photo Credit: pcdsys.com

See Part I here.

Part II:  [April 13, 2013]

First Visit:

So I had my first visit with Palliative Care a few days ago. This Palliative Care department has been touted as a great group. They are located in the Cancer Center at the largest and most lauded hospital in our region, so I had high hopes.  I was both nervous and excited about the appointment because I had also heard the director of the department speak at a breast cancer conference a year or so ago.  It was a refreshing talk and I figured that if everyone shared his attitude, this was going to be an informative appointment at the very least.  And, at most, it could change my life in some way.

It got off to a slow start.  The specialist took a good look at my medical record — every last bit of it is available through the hospital’s online database.  Then he asked a series of questions to ascertain what my life quality is like these days.  We discussed the ‘why’ behind my oncologist’s referral.  He did a physical exam and then talked with me about a treatment plan.

Before you read on, I will let you in a little secret.  I used to be what my past doctors referred to as “medication non-compliant.”  I did not (do not) like to take drugs — especially painkillers — unless I REALLY needed to.  And I would just go off pills just because I didn’t want to take them anymore [despite those yellow and black warning labels that said scary things like, “Do not discontinue abruptly,” or “Do not skip a dose of this medication.  Serious complications could occur.”]  I may have pretended to be a good patient, but I was not.

This newsflash may be a little/lot surprising when you look at the list of medications I am currently — and dutifully — taking.  Since the two hospitals and the independent cancer center I go to all share the same electronic charting database (e-Record), a complete list of all of my meds is available in my virtual chart.  And every time I sit down with any of my doctors, that list of meds is reviewed and I am asked if I am taking everything as prescribed and a box is ticked to indicate my answer for each. There is nowhere to hide.  And they print this list for me every time I walk out the door, so it’s easy for me to just whip it out to count the number of prescriptions I’m on.

The back corner of my kitchen counter...

The back corner of my kitchen counter…

21.  I just counted 21 different prescriptions.  That is a lot of pill bottles for someone who doesn’t like to take drugs. And a lot of pill bottles to open a few times per day. But life has changed in every way in the past three years.  Taking pills I don’t want to take is just par for the course. But I still haven’t given in to the painkillers entirely.  I say that I take them as prescribed.  But I don’t.  And I’m sure my oncologist has figured that out.  If I took the percocet as prescribed, the 180 pills she writes for each month would only be enough to get me through 2 weeks.  But somehow I always manage to stretch them all the way to our next visit… I’m sure she’s noticed that.

So when I decided that I would be completely honest and tell these doctors what I actually take, I figured it would be a painful appointment. But it wasn’t. Dr. H thought that continuing with the Percocet (Oxycodone) I finally surrendered to taking two summers ago was a good plan.  But he said that it would be important for me to begin taking the dose actually prescribed. He also said that rather than waiting until the last possible moment to take a dose, I should be on a regular schedule of every 4-6 hours.  The premise is that keeping your pain under control is a much healthier way to live than chasing the pain and poorly managing it.  It is apparently much easier to keep pain under control than it is to get it under control. But I knew all this from the countless times it had been explained to me in appointments, after surgeries, in the hospitals, etc.  This was just the first time I was really prepared to listen.

Dr. H also asked that we increase my Neurontin (Gabapentin) prescription from 300 mg to 600 mg per dose. 3 times per day and at bedtime.  This would help with my nerve pain and issues (left over from Taxol chemotherapy and a left-sided radical mastectomy — I did have both breasts removed, but the mastectomy on the right side was far less invasive).  It might also help with the hot flashes and energy-sucking night sweats I have been experiencing since an emergency hysterectomy / salpingo-oopherectomy last year at the age of 35. Dr. H said that we would do this for a few weeks until I had adjusted and then we could increase.  He also said that when I returned, we would discuss the addition of methadone or morphine to the schedule.

Whoa.  What was that?  Methadone or morphine?  Really?  From what I’ve heard of this group, it’s difficult to get drugs out of them, so I have to say that hearing this was a bit of a shocker.  Dr. H stepped out to get the Director of the group.  I figured Dr. Q would set the record straight and take the morphine and methadone off the table.  I mean, I am 30-something years old, I shouldn’t be preparing for a life on these drugs, right?

Photo Credit: Stinkin-Thinkin.com

Photo Credit: Stinkin-Thinkin.com

Then my doctor’s boss came in, reviewed my chart, and gave his take on what the treatment plan would be.  It matched up identically.  Even the morphine/methadone part.  They seem to feel it is time for this and that there is no point in suffering needlessly anymore.  That was a sobering thing to hear.  I will have to do some research for next time because all I know of methadone has to do with recovering heroin addicts lining up to get their methadone so they can cope with the drug withdrawal. I’m hoping they have something a little different in mind for me?!

In the meantime, I am going to work on getting on the prescribed schedule and on being a decent patient!  Something tells me that I may have to add a column with my name to the sticker chart I keep to help the boys behave.  Maybe if I take all my meds as prescribed I can get a Hot Wheels car, too!

Weekly Photo Challenge: Changing Seasons

A collection of photos for the changing seasons:

cancerinmythirties.wordpress.com breast cancer winter photo challenge changing seasons illness

Fall Becomes Winter
“Winter Through the Window”

cancerinmythirties.wordpress breast cancer weekly photo challenge changing seasons swan

Winter Becomes Spring

cancerinmythirties.wordpress.com breast cancer breast cancer changing seasons beach bald

Spring Becomes Summer

cancerinmythirties.wordpress breast cancer weekly photo challenge changing seasons leaves stoneybrook park autumn

Summer Becomes Fall

If you would like to take part in the challenge, please visit:

http://dailypost.wordpress.com/2012/12/07/weekly-photo-challenge-changing-seasons/

http://dailypost.wordpress.com/category/photo-challenges/

Thank you!

$50 Straws AND How Cancer Changes Everything

cancerinmythirties.wordpress.com breast cancer mastectomy  hospital port

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.

————————————————

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…

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Oh No, I’ve Been Robbed! Did Cancer Steal My Compassion?

cancer in my thirties young 30s hospital

Cartoon by Robert and Donna Trussel http://donnatrussell.com/cancer-cartoons/

So I spent Thursday night through Friday morning in the E.R. with one of my sons.  I was reluctant to go in, but his 106.2 degree fever and listlessness made it necessary.  Though no one likes the emergency room, I have a developed a particular and overwhelming distaste for the whole hospital scene.  And, sadly, this hospital overnight prompted me to realize how “jaded” I’ve become when it comes to the severity of symptoms and illnesses in general.  Call it another side effect of being a cancer patient.

What I am afraid to admit out loud — and even really hesitant to share in this, my somewhat anonymous blog, is that I am beginning to wonder if cancer is interfering with my ability to be the kind of parent and person I want to be (and the kind of parent/person I used to be).

While procedures and blood draws and surgeries and medications and side effects and…(well, you get the picture) have become the norm for me, they are not the norm for everyone.  And, fortunately, they are not the norm for my children.  But I sometimes lose sight of the fact that everyone hasn’t spent what amounts to months (when you add up all of my time as an inpatient and outpatient since my cancer diagnosis in April 2010) in hospitals and cancer centers for surgeries, life-threatening infections, chemo, radiation, appointments, monoclonal antibody infusions, port blood draws, tests and procedures.  Or that not everyone is waiting to find out if that lesion in their brain is malignant or if their liver function and lab values are so poor because the cancer may have metastasized to a vital organ.

cancerinmythirties.wordpress.com breast cancer thirties 30s funny medical cartoons I see my new perspective reflected in my everyday life.  Someone will tell me about a symptom they’re experiencing or about their cold or papercut and I try to be supportive and kind.  In my mind, though, I sometimes find myself wandering off to thoughts of how upsetting it might be for them if they had to have their breasts cut off and their lymph nodes dug out, if they faced each day with a constant headache, if they had to manage life with lymphedema, or if they lived their lives with unrelenting neuropathy (a leftover gem from the chemo) that gets so bad that it interferes with their ability to concentrate/type/hold a glass.

Or when I hear a pregnant woman my age talking about heartburn or swollen ankles and I am consoling on the outside, but inside I am thinking about how the large masses in my pelvis and ovaries prompted two painful surgeries and the loss of what remained of all but one of my female parts (in case you are wondering, it rhymes with bagina).  And then I drift off to a mental picture of the baby girl I will never get to hold in my arms because:

a.) You need a uterus to have a baby — and ovaries and Fallopian tubes and a cervix lend something to the process, too.  But all of these things filled my gynecologic oncologist’s specimen jars and were sent off to a lab and probably a garbage bin somewhere.

b.) Who would allow someone with my medical history to adopt a baby?  As much as I would love to be here to raise a new little baby, let’s face it, I am clearly a flight risk.

I thought of a “c”.

c.)  I know surrogacy has gained popularity.  But that’s not even an option for me because my eggs were stolen.  Okay, they weren’t stolen.  But it feels like they were.

And I have that heartburn and those swollen ankles (and legs), too.  Two years of chemo and Herceptin messed up my kidneys and made edema a big problem for me.  And I have my dusty bottle of Nexium for my acid reflux disease, but I stopped taking it because I take so many pills that I’d rather look at those pretty purple capsules than ingest them.

cancerinmythirties.wordpress.com breast cancer thirties 30s funny medical cartoons

Cartoon Credit: Robert & Donna Trussel
http://donnatrussell.com/cancer-cartoons/

The bottom line is, even though I want to feel sorry for you because you have a cold, inside I am dreaming of what it would be like if a runny nose and congestion were my biggest medical problems.  Not so deep down I am wishing I could just take some NyQuil, hop into bed, and wake up the next day and be all better.

This is NOT me.  This is NOT who I am.  I am was a kind and thoughtful person before cancer left my spirit beaten and bruised.  Even if I felt like I like was dying, I would put your illness ahead of mine.  I would comfort and take care of you.  I would ask what I could do to be there for YOU.  Even if I had just had surgery myself, I would gladly and altruistically chop vegetables and brown chicken for your homemade chicken soup.  And I would do it without a second thought.

Though my ovaries weren’t technically stolen, I feel like the deeply compassionate person I used to be was.

While this isn’t great news for most of the people in my life, it is worse news for my twin 3rd graders.  I fear that there will come a time when I devalue their medical experiences, their illnesses, their scrapes and bruises, their throat cultures and their trips to the doctor for a flu shot or a blood draw, or the sessions with the nebulizer to that help with their asthma.  And that’s just not good.

cancerinmythirties@yahoo.com breast cancer thirties 30s mom hugging roo baby hysterectomy death dyingSo I am trying my best to undo some of what the cancer has done.  I am making a conscious effort to put the severity of some of my experiences aside to look at things as they are for other people and to avoid comparisons.  I am trying to give my boys the special hugs they need for their scraped knees and to talk them through their fears of having blood drawn or shots given.  And, as was the case this week, I am putting my own exhaustion and pain and sickness aside (as much as I can, anyway) to care for these boys who need me.  Case in point — even though my brain shouted, “Don’t do it!” because I am leukopenic and neutropenic, I climbed into my son’s hospital bed to cuddle with him because he was worried about what was going to happen to him… While I can’t guarantee that it always will, my heart won this time.

I am really trying to do what counts for my kids.  But I may still look at you with envy when you tell me you have a cold.

*Special thanks to Donna & Robert Trussell for allowing me to use their fantastic cartoons*