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An Update on Frank and Nancy

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Do you remember Man of Science, Man of Faith, a story about my friends Frank and Nancy?

Frank was diagnosed with a recurrence of his cancer last month.  He was given 3 months to live.

It hasn’t been a month yet.

Three weeks ago, Frank and Nancy were still kind of hopeful.  Even I am not quite sure what I mean by this.  Maybe just that they believed Frank had some good time left and that he would surpass the three month expiration date he’d been given?

Exactly three weeks ago (a couple of days after learning about Frank’s updated diagnosis), I stood in my kitchen chopping vegetables and browning chicken for homemade chicken soup.  I was making it for Frank.   When the people I care about are sick and I feel helpless, I am compelled to make chicken soup and bring food.  I certainly felt helpless when I heard about Frank’s stomach metastasis, so out came the big soup pot.

A few hours later, when the soup was finished and packaged in big, blue glass bowls, I walked next door to Frank and Nancy’s house.  I dragged my husband along so he could deliver the large bag of organic fruits and vegetables I had picked up at the grocery store for Frank and Nancy.

I knew that Nancy would understand my response to her husband’s illness.  I knew this because she has showed up on my doorstep with food a number of times since my diagnosis.

Nancy accepted the big red bag full of produce.  But she did not want me to leave the soup.  She said that three families from her church had dropped off three different kinds of soup that weekend.

I insisted that Nancy keep the soup.  I said that they didn’t need to eat it, but that I had made it just for them, so they could freeze it or toss it, but I wanted them to have it.  I needed them to accept it.  I’m usually not this forceful, so I surprised myself with my insistence.  But they had to take it, for my sake, because I had to help in some small way.

A couple of hours later, Nancy called me to tell me that she hadn’t wanted to say anything, but Frank was only eating soft foods.  She said that he had tried the other soups but couldn’t eat them (or didn’t want to).  She told me that he tried mine and enjoyed it, including the soft vegetables and mushrooms it contained.  She said that he had even managed to finish a bowl.  She was so happy that she had to call.  And I was so touched that I felt a hard lump develop in my throat.

So two weeks ago when Nancy said that the soup was gone and she asked me to make more, I was delighted.  I was just getting over pneumonia and was so tired that it took me most of the day (with rests in between!), but I was honored that Nancy had asked.

This time I decided to roast a whole chicken.  I stood in the kitchen dressing the chicken, thinking about poor Frank and Nancy.  As I placed rosemary sprigs and a freshly cut lemon into the chicken, I recalled that day two summers ago.  Nancy had arranged a surprise 50th birthday party for Frank.  As I rubbed the herbed butter I had just made onto the chicken and under it’s breast skin, I remember how excited Nancy was.  She wanted everything to be perfect.

Nancy even went so far as to plan the party in a large and lovely space in the new town hall building — in another town a half hour away.  She didn’t want him to suspect.  She told Frank that the party he was going to was a graduation party for a girl they knew.

I was now chopping vegetables, placing them in the roasting pan beneath the chicken, and dousing them with olive oil and salt and pepper.

When Frank walked into the party room, we were all there.  His closest family and friends.  Nancy had even flown Frank’s brother and sister in from out of state.  So when he walked in and saw the fake graduation girl and noticed his own friends and family behind her, I think he was just as shocked as when everyone shouted “Surprise!”

I opened the oven and slid the roasting pan in.  It was time to start working on the soup now.

Frank was clearly surprised.  So surprised and touched that he wept.  Frank is a very tall man, so to see this tall man with a commanding presence stop in his tracks and begin crying was a moving sight.

I filled a large pot with water, chicken stock and salt and pepper, and I began washing and chopping more vegetables.

It was a great day filled with smiling and laughter.  Genuine happiness.  Nancy had done a beautiful thing for Frank.  Though she didn’t have a lot of money to spend, she made the party seem like she had a large budget to work with.  She worked hard on this day and she asked people to pitch in where they could.  She knew it was an important day.

It would come to be more important than she ever could have realized.

I gently dropped vegetables into the pot and added a touch of olive oil and seasoning to the stock.  Soon I would take the golden brown chicken from the oven and add juicy chunks of chicken and tender, roasted vegetables to the stockpot.  And then I would walk next door to Frank and Nancy’s house with my pot and with the hope that Frank would be able to eat my humble offering.

That was two weeks ago.

One week ago, Nancy said that Frank was now only able to drink the broth.

And things got progressively worse this week.  I remember hearing the distress in Nancy’s voice whenever we talked.  She was tired from worry and from caring for Frank around the clock.

And when Frank and Nancy’s son came over in need of a ride to school on a couple of the mornings (because he had missed the bus so he could help his mom take care of his dad), he was noticeably quiet.

Nancy was having trouble keeping Frank hydrated.  She was using a syringe to wet his lips and mouth.  I took Pedialyte popsicles over so she could melt them down and replenish some of his electrolytes.  But we knew they wouldn’t make that much of a difference.

Despite her vigilance, Frank had also developed a bedsore.  Nancy said that the nurses had’t been caring for it, so I took a special cream over that would help to soothe it and form a barrier.  But I was afraid that it would get infected and I knew that it must be causing pain.

Early Thursday morning, the phone rang when it was still dark outside.  It was Nancy.  She said that Frank was unresponsive and that he had wet himself.  I tried to conceal how upset I was to hear this, but it was no use.  I talked to Nancy for a little while and told her I would bring some adult diapers over.  They had given me these when I was hospitalized for my hysterectomy last year and had been hemorrhaging and pads were not enough.  I was sad when I realized that I had no idea back then that they would be going to Frank.

Frank came around again that morning and was able to talk to Nancy and his kids, but I knew that these things were signs that he would be gone soon.  My guess was that day.  Frank and Nancy’s son came over for a ride to school after he helped his mom clean and diaper his dad.  He was visibly shaken.  It was heartbreaking.  He is a good kid and a good son.  I was upset that he had to experience this.  His prom was the next night and instead of worrying about what kind of corsage to get his date like his friends, he was worrying about losing his father to cancer.

The day went on and night came.  At 2 a.m., the phone rang.  I knew it was Nancy.  I picked up the phone and heard a small voice on the other end.  It was Nancy telling me that Frank had just passed.  She sounded both upset and relieved.  His pain had ended and his suffering was over.

Cancer claimed another life.

Frank was just 51.  He is survived by his loving wife, son, daughter, brand new (5-month-old) granddaughter, and a large group of friends and family who loved him.

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?

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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…

Weekly Photo Challenge: Resolved — In Memory of Julie

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Julie (left) & Me

I missed last week’s photo challenge, but when I saw this week’s topic, I had to pull out my old photo albums.

The photos you see here embody my New Year’s resolution for 2013.  What is it?

***To appreciate that life is sometimes too short — and to fulfill some of my bucket list wishes.***

The photos I’ve chosen are from a defining point in my life.  Why was this little window of time, this blip in my life, so special that I feel the need to highlight it here?

Because the girl in the photos with me is my friend Julie.  She was one of my very best friends growing up.  I loved her like a sister.  We laughed together, cried together and reached many a milestone together.

These photos of Julie and me are from a once-in-a-lifetime trip we took together.  I know, I know, people say “once-in-a-lifetime” but they don’t always know that for sure.  Sometimes they just say this to be dramatic.

But I am saying it because I know it is true.  I know that Julie and I will never take another trip together.  In fact, we will never laugh or cry or meet another milestone together again.  Ever.

Because Julie is dead.  She was killed in a car accident 5 years ago when we were just 31.

It still takes my breath away when I remember that she is really gone, but I often find myself smiling as I think of the time we spent together.

Though Julie’s death was tragic and horribly sad, her life was the opposite.  Julie exuded warmth and beauty.  She was positive and sweet and lived her life to the fullest.  She was courageous and didn’t let anything stand in her way…

…including me.  You see, I didn’t want to go on that trip.  I had never done anything like that before.  I wasn’t adventurous.  I didn’t think I deserved the opportunity to get on a plane.

It was about a month before our high school graduation when Julie proposed the idea.  Her exchange student for our senior year, now like our new sister, would be returning home to Mexico just after graduation.  What if we went to Mexico to stay with her over the summer?

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I was not the adventurous type and I opted to stay home and work until we started college in August.  Plus, I needed to be home to help care for my little sisters.  And I had never done anything just for me before.  How could I start with something so drastic?  No, I would not go.

But it wasn’t really up to me.  Julie would not listen to my protests.  She jokingly threatened to unfriend me (we had been very good friends since we were kids) if I didn’t commit to going.  She said she knew what was best for me (and I admit that she often did).  So, on one of the many evenings I spent at her house, she made a final plea.  Again I refused.  We were munching on her delicious homemade chocolate chip cookies when she picked up the phone and called the airline (this was before you could use the internet to book your tickets).  She pretended to be me and booked my tickets while I stood in her kitchen.  Though I halfheartedly protested and though I feigned anger, I was secretly delighted.  I knew I would enjoy this special time with Julie.  And I knew I was going to miss Judy (her exchange student), who was now a dear friend and that this was my chance to see where she lived and to say a real goodbye.

This was going to be my first real adventure, my first and last hurrah before heading off to university (20 minutes away – another story!) in the fall.

So we graduated from high school, Judy left for her home in Mexico, and we embarked on our adventure 8 days later.  Before stepping off the plane in Tucson (and driving the 4 hours across the border to our friend’s house), I had been a shy straight-A student who hung out in the teachers’ lounge after school because I could always relate better to people older than me.  Between sophomore & senior year, I took every single Advanced Placement class (and there were a lot!) our high school had to offer — and aced them all.  I was voted “Class Introvert” and could get A’s on Calculus tests without studying.  I thought A.P. Physics and Chemistry were fun.  I had been babysitting since I was eight and got my first “real” job the moment I was old enough to get a work permit.  I balanced school and mountains of homework with two afterschool/weekend jobs.  I volunteered a ton — you name a volunteer activity and Julie, jme and I signed up for it.  I had a resume filled with achievements.  I had a full scholarship to Cornell University and scholarships to a number of other prominent schools for Engineering or Biochemistry/Pre-Med waiting for me and I had every intention of continuing to be that people-pleasing, old-before-my-time nerdy girl…

I thought that maybe before college I would do something crazy like cut my long hair or start wearing lipstick.  I had no idea how this trip was going to change me.

It was an incredible 3 weeks.  Because Julie and I were staying with Judy and her family, we “lived” in the heart of a non-touristy part of Mexico where I was the only person with blondish hair for many, many miles.  We got a taste of what it was like to grow up there.  What an amazing way to see another culture.  Our many adventures included a 28 hour (total) roundtrip escapade on an old, steamy, smelly, jam-packed bus.  We were headed to see another friend (Juan–also a former exchange student) in Mazatlan.  The bus trip came complete with dirt roads, middle of the night stops by gun-toting “bandits” in the midst of nowhere, and people who were so scary that we slept in shifts because there had been a number of recent American kidnappings on buses just like ours.  As the only Americans who had probably set foot on our bus in a very long time, we figured we were targets, which made it that much more exciting for my friends (and nerve-wracking for straight-laced me).  When we stumbled off the bus, though, I realized that it was all worth it.  The area was the most beautiful place I had ever seen.  The days were amazing — swimming in the ocean, drinking pina coladas in the pool, parasailing and so much more — things I never dreamed I’d be doing.

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Julie parasailing in Mazatlan

And the nights were even more incredible.  More things I never dreamed I’d do.  All of a sudden quiet, shy me who hadn’t really dated much was dancing on tables at these gorgeous open air bars, forgetting about all of the responsibilities waiting for me back home, and getting kissed by older guys in their 20s (Mexicans & Americans alike) who could have stepped off movie sets or off the pages of GQ.

On the bus ride back to Judy’s city, I felt like a new person…  All of a sudden I had gone from being a cornerstone on the math team to someone who had 25 year-olds competing to spend a few minutes on the dance floor with her.  It was fascinating and exciting.

Our next stop was a lovely little town on the Gulf with mountains in the background.  Here we had more adventures with sangria, late-night swims, and mechanical bull-riding.  Then Julie’s older brother (who was in a band & lived in San Francisco) asked us to take a couple of days out of our Mexican adventure to come to see him.  Julie hadn’t seen her brother in a while and she had a huge crush on his roommate, so it was a quick yes from her.  All we had to do was drive to San Diego & he’d have tickets waiting for us at the airport.  Along the way we stopped to visit Judy’s cousins in Tecate (right next to the Tecate beer factory) for another wonderful night filled with yummy food & drinks and happy people.  No matter where we went (with the exception of on that bus to/from Mazatlan), I never heard a word of complaint or saw a frown.  Regardless of what everyone did or didn’t have, the people we met/lived with were warm, welcoming, generous, and positive.

Even the drive up to the U.S. was an adventure.  And then we were off to San Francisco, a place I had always wanted to visit.  We didn’t do anything too exciting, but even a trip to the grocery store was fun with Julie.  And, as it happened, the roommate guy she had a crush on actually “liked” me.  Julie was very gracious about it and happily let me have my moment with him.  He was 25 and an engineer on a big naval ship — the U.S.S. Abraham Lincoln.  Though he was quite handsome, he was nerdy like me & we were instantly drawn to each other.  It was odd for me to realize that I had spent my teenage years feeling awkward and burying my nose in books — and all I had to do was take my hair out of my ponytail and throw a pair of jeans on (and talk to people 7 or 8 years older than me!) and voila…  Eric and I stayed up all night every night talking.  And then we all spent the days together seeing the sights.  It was a total departure from the “me” I knew, someone who had only had a few high school boys show any interest in her.  [Eric continued to send letters & call me (and my mother!) for years after this trip.]

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Julie in Spain — wasn’t she lovely?
(I didn’t take this photo — I never made it there)

Before I knew it, Julie, Judy & I were flying back down to San Diego and driving back into Mexico…  And shortly afterward, we made the long trek back to Arizona to catch our plane.  Judy’s family had a condo near the airport, so we spent one last night there — the 3 of us girls — laughing, talking & drinking more sangria in the hot tub (I hadn’t even been in a hot tub (or a condo for that matter!) before).  It was a wonderful way to end our trip.

That summer was — and remains — the best of my life.  After that I started college as a new person.  Still the old nerdy straight-A student who loved math on the inside, but with a new look and a newfound confidence on the outside.  I was always so grateful to Julie for that and so many things.

That trip was the last time I saw Judy… Until 5 years ago — for Julie’s funeral.  Julie was killed by a drunk driver in Spain, a country she loved so much.  The special young man she loved survived, but he was seriously injured — and he had lost the love of his life right before his eyes.  I was no stranger to loss or tragedy, but this was beyond anything I could wrap my mind around.  When jme, who had grown up with Julie from the age of 3, phoned to tell me what had happened, it was an absolutely heartbreaking call.  Jme got on a plane to come back home from Seattle.  And Judy flew from Mexico to stay at my house so we could be together to bury our dear friend…

Though her life was short, Julie’s impact was great.  She made everyone feel special and she touched lives here and across the Atlantic in deep and lasting ways.  The world was a far better place because she was in it.

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Julie (rt.) and me
Early morning somewhere in Sonora, Mexico

So, this year I resolve to be more like Julie.  I resolve to check some things off my bucket list (and to make a bucket list).  I resolve to just “go for it” more.  I resolve to work on living my life to the fullest (I’m sure it will take me a while to get there, but I vow to work on it).  And I plan to honor her memory by trying to find and nurture the little light that she saw inside of me when we were just girls on the edge of new beginnings.

In Memory of Beautiful Julie – 1976 – 2007

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Weekly Photo Challenge: Resolved

If you would like to participate in The Daily Post’s Weekly Photo Challenge:

The Daily Post’s Weekly Photo Challenge

Weekly Photo Challenge: Resolved

$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.

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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…

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

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*

what my 8~year old son has to say…

One of my sons asked if he could post something on my blog.  He wrote the title and what follows here all by himself!

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breast cancer mom kids boys mattie dog lymphedema mastectomy

From my 8-year-old son:

Cancer is a jerk of course every one nows.

my mom has CANCER  its bad because my mom can not do that much stuff.

I WANT TO DOODOO on cancer  🙂

I HATE IT I HATE IT I HATE IT.

thank you for following my mom readers

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

 

breast cancer thirties 30s motherhood death dying

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…

breast cancer thirties babies 30s death dying love

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

National No Bra Day Breast Cancer Awareness

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***10/9/2013:  I have been completely overwhelmed by the number of visitors this post has received in the past few days (over 130,000 at last count!).  I am not sure who first shared it — or who continues to share it — but I want to THANK YOU all for visiting, reading, and sharing it.  I think the realities of breast cancer are so often trivialized and “pinkified” so I am sincerely grateful to everyone who has taken the time to read or share my blog.  I am sorry to say that my story is just one of many, but with your help, we may just be able to do something to change that.  Please feel free to leave me a comment or to share your own story below — or send an email: cancerinmythirties@yahoo.com.   Thank you all. ***

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 post and share photos of their braless breasts and 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…

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 think of myself as 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 not so young) 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.  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. Case in point — during a recent trip to my grocery store’s pink breast cancer section, I found (after reading the small print) that the maximum per item donation to the breast cancer “cause” was $0.35. An abysmal $0.35 for a $25.00 plastic coffee mug!  And, guess what, once that $0.35 reaches “the cause,” a portion of it is lost to overhead, salaries and advertising costs.

One of the most unfortunate issues here 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 key chains, pink beer koozies, pink boxes of crackers and pink plastic water bottles could be going to fund research into metastatic disease, better (and less harmful) treatments, the elusive “cure” and, dare I say it, PREVENTION.

My intention is not to offend or to hurt the feelings of anyone who is genuinely trying to help, but I think it is important for you to know the truth.  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.  [There are pink products out there that do help to fund research, etc. — they seem to be in the vast minority, but they do exist.]

And, if you don’t like homework, here are a few great organizations — there are many others, but these are some of my favorites:

*** Metavivor.org ***:  [A terrific organization…]  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.

*** http://www.standup2cancer.org/ ***:  [Another great one — and it’s not just for breast cancer.  Note that your donation will NOT be BREAST CANCER-specific, but will be directed toward multiple cancers. Since you are reading a breast cancer-specific post I know this may or may not be in line with your philanthropic goals, but if it is, SU2C is an excellent choice.]  “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.

Other Important Organizations:

***A number of people diagnosed in my age bracket have emailed or commented about how Young Survival Coalition (YSC) has helped them.  This organization is the premier global organization dedicated to the critical issues unique to young women who are diagnosed with breast cancer. Founded in 1998, YSC’s mission is to serve the roughly 13,000 under 40 (often an under-recognized contingent of the breast cancer population) who are diagnosed with breast cancer each year.

YSC helps these young women by providing support and health information to see them from diagnosis to long-term survivorship. The nonprofit tackles issues specific to this population, like early menopause, effects on fertility, more aggressive cancers and lower survival rates. From YSC, “compared to older women, young women generally face more aggressive cancers and lower survival rates. More and more evidence tells us that breast cancer before age 40 differs biologically from the cancer faced by older women.”  Thus, the organization also advocates for increased studies on young women with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful.

***If you are interested in making a difference for through an organization specifically targeting Inflammatory Breast Cancer, I recommend http://www.theibcnetwork.org/:  Inflammatory Breast Cancer (IBC) is a rare and highly fatal form of breast cancer that is not typically discovered by mammogram and often occurs prior to standard breast cancer screening age recommendations. Our all volunteer board is focused on education and funding research for this 200 year old orphaned form of breast cancer. No Lump Still Cancer.

…or consider a group that helps 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 (or providing non-financial support) at/for a local cancer center, hospital oncology floor, or for an organization that helps cancer patients and/or their families. [If you need help with finding a place to volunteer, etc in your area, please email me with your town/city name & I will do my best to help…].  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 which was 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 believe is my best advertisement for Breast Cancer Awareness Month:

Me -- 5 Days post bilateral mastectomy and complete ALND (Axillary Lymph Node Dissection)
Me — 5 Days post bilateral mastectomy and complete ALND (Axillary Lymph Node Dissection)

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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And P.S. — because it seems that clarification is needed for some — this post is NOT about a woman’s choice to wear a bra or not wear a bra.  Those comments miss the boat completely.  And I do not need a lecture on the merits of going braless.  Wear a bra.  Don’t wear a bra.  That is your choice.  Just don’t choose to not wear a bra on one specific day and call it an effort to benefit breast cancer patients or to advance breast cancer research.  Raising BREAST AWARENESS you may be, but you are not “supporting BREAST CANCER” by leaving your bra at home.

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 10/10/13:  This post was written a year ago on National No Bra Day.  Please visit my latest Breast Cancer Awareness posts here (National No Bra Day: An Update) and here (Is It Really “All About the Titties” on National No Bra Day (a.k.a. Metastatic Breast Cancer Awareness Day?). And thank you all for your support and amazing comments!

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.

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…

 

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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.