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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: Color

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I love The Daily Post’s Weekly Photo Challenge theme for this week — Color.

Though you’d never surmise it from my clothing (my wardrobe consists primarily of 3 hues (if you can call them that!) — brown, grey and black)), I love color.

I have a difficult time imagining a world without it.  I have often thought that of all the senses to lose, I would likely miss sight the most.  Of course losing the ability to taste during chemo made me question the theory I developed during my dismal ‘what if’ game.  But, in the end, I reverted to my original thought — that it would be more upsetting to live in a world without color.

Its presence lift our spirits.  Its absence brings us down.  It is powerful and beautiful.

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As always, thank you for visiting.

If you would like to participate in this week’s photo challenge, please click on one of the links below:

Weekly Photo Challenge: Color

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Weekly Photo Challenge: Forward — Boys at the Beach

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

http://dailypost.wordpress.com/2013/02/22/forward/

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

Thanks for visiting!

Weekly Photo Challenge: Love

Well, I have returned from my first adventure…but things have been far too hectic and I have been far too exhausted (and ill with cellulitis) to write about the experience yet.  But it is a post I am looking forward to sharing!  In the meantime, I thought I would return with a photo challenge post.  Thank you so much for all of the likes and comments on my last post — and for being there to cheer me on…

These may not be the greatest photos, but to me, they are wonderful representations of this week’s photo challenge topic, “love.”

There were many contenders, but I am far too tired to add them all (and I don’t want to bore you!), so here are just a few.  I may come back to add more at a later date…

Thank you for reading!

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It was Christmas and my littlest sister decided that after all of my chemo and surgeries, the best gift she could give me would be a little companion to help me weather the remainder of my cancer treatments.  So she chose this sweet little mini dachshund and presented her to me with a red ribbon around her furry little body.  Ginger has spent many hours snuggling with me and giving me comfort in the two years we have been together.  And she is a wonderful reminder of the special kind of love sisters sometimes share.

Image

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Another Christmas photo…  I was sick and so tired.  And my sweet miniature schnauzer, Mattie, snuggled up next to me.  I had so much to do to get ready for a busy day of making our Christmas rounds that day, but I couldn’t resist the opportunity to lay there with my special girl.  And I am so glad that I did because she died suddenly of cancer a couple of months later.   She loved me unconditionally and I miss her as much today as I did when she first died.

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And my boys…

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Weekly Photo Challenge: Love

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

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

http://dailypost.wordpress.com/2013/01/25/weekly-photo-challenge-love/

 

The Daily Post: Weekly Photo Challenge: Surprise

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It was April 12, 2012.  It was the anniversary of terrible surprises.

I won’t name them all.  Just a few.

It was the anniversary of the day I was certain that my unborn babies and I would die in the hospital.  It was the day after Easter.  I had been hospitalized with preeclampsia since the week before when I had gone to my check-up and was told that I needed an emergency induction.  I was sent next door to the “best” hospital in our region.  The hospital with the Level III NICU.  The hospital that people traveled across counties and hundreds of miles for.  I had been in active, induced labor for 4 days by April 12, 2004.  By then, the preeclampsia had become severe.  I was so sick.  I was shaking.  I was bleeding (from a yet-to-be diagnosed placental abruption).  I was being pumped with high doses of pitocin to keep me in active labor — and competing doses of magnesium sulfate because my blood pressures were so dangerously high.  And I had gained an inconceivable almost 100 lbs in edema weight since my admission into the hospital.  My organs were shutting down.  I was hearing Christmas music when there was no sound.  I was dying.  And my babies were, too.

Fast forward to April 12, 2005.  One year later.  Two days before my babies’ 1st birthdays.  The day the woman who was like a second mother to me took her life… a woman who also had breast cancer young (but for her, her diagnosis came in her 40’s)… a woman who was also the mother of one of my two very best childhood friends.  I had known her for what felt like my whole life.  I had lived with her during a rough patch in my life.  And now she lived around the corner from me in a house matching mine.  And she had reached out to me and asked me to spend more time with her…but I was so wrapped up in my own traumas and exhaustion that I didn’t see her as much as I should have.  I thought there would be more time.  And then the call came on April 12 that I was too late.  We all were.

And fast forward ahead again to April 12, 2010.  This was the day before I learned for sure that I had breast cancer.  Nuff said.

But…

I had to put these difficult/horrible memories the back burner because April 12, 2012 was 2 days before my twin sons’ birthdays.  It was also their Spring Recess from elementary school.  So we wanted to do something special and make some happy memories for their birthdays.

We packed up the car the day before and set our sights on Philadelphia.  I never been there, but we had free passes for the nearby Adventure Aquarium in Camden, NJ.  Since it was “only” about an 8 hour drive and we had heard the aquarium was something special, we couldn’t pass the opportunity up.

April 12, 2012.  After a struggle with traffic and an almost unsuccessful quest to find cheap parking, we arrived at the aquarium much later than I had planned.

And I was already exhausted.  You see, only a couple of weeks before I was lying in an operating room while my gynecologic oncologist was performing a radical hysterectomy and oopherectomy on me.  I was 35 and wanted another baby.  But what all of the breast cancer crap would have made unwise and extremely difficult, large masses that we were all certain would come back as ovarian and pelvic metastasis, made perfectly impossible.

surprise the daily post weekly photo challenge cancerinmythirties.wordpress.com breast cancer feeding the stingrays philadelphia camden, nj Adventure Aquarium thirties 30s mom motherhood family sting ray tank touch wadingDespite this, I entered the crowded aquarium in a wheelchair and with a twinkle in my eye.  I was planning to enjoy the day with my boys.

It was when I was handed a map at the admission desk that I first saw it.  There was something special going on today.  At precisely something-o’clock (I don’t remember when the something was!), a few lucky aquarium goers would be selected from the crowd for a special stingray encounter.  Now this wasn’t your average aquarium encounter.  This was an opportunity to wade into the large stingray pool to hand-feed the rays!

I was determined to be one of the lucky few.

But there were a few major issues with my plan.

  1. My plan wasn’t a plan.
  2. I generally don’t win things.
  3. The place was packed.  And I mean packed.  Everyone with kids on Spring Break clearly had the same idea as we did.  It seemed like the whole east coast was in the aquarium.  There was no way I would be able to get anywhere near the stingray tank, let alone in it.

Nevertheless, I told my husband and my boys that I would be in that tank that afternoon.  My husband told me to give it up.  There was no way.  So we visited the other exhibits and made our way through the aquarium.  We were looking at the hippos in a giant tank filled with hippos, fish and hippo poo when I said, “Oh no, it’s 5 minutes til something-o’clock!”

Unable to run because of the surgery and my post-chemo fatigue, I asked my husband to push me over to the exhibit, an exhibit located almost all the way over on the opposite side of the aquarium.  He told me that it was impossible to get there in 5 minutes and that even if I did, I would never get near the tank and I would certainly never be chosen.

No matter.  I called in all of my favors and groveled, something I never ever never do with him.  I was determined.  So we weaved in and out of the crowds and crowds of people and finally made our way around after what felt like an eternity.  When we arrived near the entrance of the giant stingray room and pool, I emerged from the wheelchair and we left it outside.  I walked into a densely packed room filled with children and adults alike.  It was chaos.

And we were late.  They were asking the audience 4 questions.  4 people who were given the opportunity to answer the questions and who answered correctly would be invited into the tank.   The selection process had already begun.  I had already missed question 1.

Question 2 came and at least 50 hands shot up in a crowd of many more than that.  The tank-keeper wouldn’t even see me.  She selected a child in front and, with the assistance of her dad, the girl gave the correct answer.  Question 2 came.  50 or 60 more hands.  She chose a teenager in front who also answered correctly.

The final question came.  “What kind of seastar is this?”  I knew the answer.  My hand shot up with about 1,000 others.  She asked a child.  Wrong answer.  She asked an adult.  Wrong answer.  I was so buried in the crowd that she would never see me.

But then she pointed in my direction.  “The young lady with the longish red-brown hair.”

“Oh, that’s not me,” I thought.  “I have ugly short not red-brown ‘I’ve had lots of chemo’ hair.”

But then I remembered that I was wearing my lovely wig.  It was me.  She was asking me.  “A chocolate chip seastar,” I shouted!

It was the right answer and I was invited to come out of the crowd to get ready for my encounter.

It was incredible.  I changed out of my winter boots and into the crocs they offered me and we walked up the ramp to be debriefed.  We would be given dead fish parts to hold between our fingers and the rays would glide across our hands and take the carcasses into their mouths.

I could barely contain my excitement.  I had never done anything like this before.

cancerinmythirties.wordpress.com thirties 30s stingrays sting ray weekly photo challenge surprise hysterectomy twins aquarium camden, nj philadelphia mom motherhood infertilitySo I waded into the tank and began feeding these beautiful creatures.  It was an incredible experience.  And I made a new friend, a giant ray who seemed to want to climb into my lap like one of my dogs.  He didn’t take the food from me, but let me pet him as he slid up my shins and splashed me.

When it was over and we were washing our feet off and changing our shoes in the little prep room, I was so overwhelmed with the beauty of the experience that I felt the need to say something to the tank’s keeper.

I told her that I was surprised to have been chosen.  Shocked, actually.  I told her that this was such a special experience for me because for the past 2 years I had been battling breast cancer.  She told me that I was so young and she gave me a hug.  She said that she was a 10 year breast cancer survivor.  She said that though they caught hers early, she still looks over her shoulder, wondering if it will return.  But she said that it also makes her grateful for every day that she is here.

I thanked her with tears in my eyes and we parted.  She felt good about her choice.  And I felt grateful for this once in a lifetime opportunity to wade with the stingrays.

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Weekly Photo Challenge: Surprise

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

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Weekly Photo Challenge: Delicate

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PowerPort (port) through which chemo and other medicines and fluids can be administered. Also great for lab draws and scans for which I.V. contrast is necessary. I was reluctant to have the port placement ‘surgery’ back on May 7, 2010. But I am so glad I wasn’t given a choice & was ‘forced’ to do it — it has been a lifesaver!

Weekly Photo Challenge: Delicate

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

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

http://dailypost.wordpress.com/2012/12/14/photo-challenge-delicate/

GUEST POST: A Holiday Season With Cancer

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*Just so there is no confusion, this is me (NOT Heather)*
Christmas 2010

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I am pleased to introduce guest writer Cameron Von St. James.   I was honored when Cameron approached me to ask about posting an article here.  After reading a little bit about what his family has dealt with, I was also moved and inspired…and I thought you would be, too.  With a new baby to care for and the holiday season just beginning, Cameron’s wife, Heather, was diagnosed with malignant pleural mesothelioma, an aggressive form of cancer.  Their story is both heartbreaking and heartwarming.

Please join me in welcoming Cameron Von St. James…

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A Holiday Season With Cancer

The holiday season has always been near and dear to my heart. It was always a time when my family came together to practice our holiday traditions and give thanks for all that we have in life.

In 2005, I was especially excited for the holidays, as my wife Heather had just given birth to our first child, Lily, and we couldn’t wait to establish our own traditions with our new family. Those feelings of giddiness were stamped out completely when we learned, three days before Thanksgiving, that Heather had cancer.

Our daughter was only three and a half months old when we learned that Heather was suffering from malignant pleural mesothelioma. I knew enough about the disease to be concerned for our future. The anger I felt was overwhelming, and I found myself preparing for the worst.

I dreaded the holiday celebrations that year, during which Heather’s family came to stay with us before she headed off to a treatment center in Boston. During dinners that should have been about seasonal togetherness, we discussed how her family could come to terms with Heather’s deadly disease. We talked about the future of our finances and childcare options for Lily. We made plans to pay for Heather’s expensive treatments, and to my embarrassment discussed how her family could help us stay afloat financially.  Heather and I both worked, but with the new baby money was already tight, and with expensive treatment and travel looming, on top of the fact that we would soon be down to one income when Heather started treatment, we were going to be in real trouble. Heather’s family helped us figure out what we could liquidate for cash, and how much they could afford to pay for. I was mortified and embarrassed, and it would be years before I could look back on that conversation with anything but shame.

cancerinmythirties.wordpress.com breast cancer malignant pleural mesothelioma story stories thirties 30s young mom mother kids holidays Christmas

Mesothelioma
Image courtesy of http://www.mesothelioma.com

I was so awash with negative emotions that I couldn’t see what I now see today. I realize now how mistaken I was to look at this time so negatively.  What I see now is that I was being so firmly supported by our family – people who came from afar to be with Heather, Lily and me during our moment of need. They were willing to help us in any way possible, they offered to make incredible sacrifices of their own for our well-being, but I was so weighed down with guilt and fear that I couldn’t see that clearly.

In spite of the odds against her, Heather eventually beat mesothelioma. This holiday season I want to take the time to give thanks for everything that I have; I know how much family means because of how close I came to losing the most important person in my life. I am so thankful for my little Lily’s continued health and growth and for all the people who helped us through our dark times. Thank you so much! You’ve all given me a reason to look forward to celebrating the holidays.

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Special thanks to Cameron and his wife for sharing their story…

Would you like to be featured here?  

If you have something to share, please send me an email:

cancerinmythirties@yahoo.com

                        

Thank You & Happy Holidays!

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

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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*

Follea’s Breast Cancer Wig Giveaway

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Me During Taxol — just before beginning radiation — January 2011. This is a wig! I had a shiny bald head underneath this lovely hair.

The post below was left as a comment on my blog.  I wanted to share it with all of my followers who have cancer — or who know someone who is receiving treatment.  Share your story (or your friend’s, sister’s, daughter’s, mother’s, wife’s, etc. story) and you could win a lovely new wig or sleep cap…

I won’t enter myself because I have hair now, but I hope you will consider entering…

Best wishes!  🙂

And thank you to Follea, Lisa Elia and Candice Cousins for sharing this info!

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Deadline for Submissions 11/18: Follea’s Breast Cancer Wig Giveaway – 6 Winners Will be Selected

Dear Cancer in My Thirties,

We believe you and your followers may be interested in Follea’s Breast Cancer Wig Giveaway on Facebook. Participants who share their inspirational story will have the chance to win a Gripper-2 wig, a beautiful Tres Chic wig or a super-soft bamboo sleep cap. To view the Follea video “A Woman’s Spirit is Unbreakable: A Tribute for Breast Cancer Awareness Month”, visit
http://www.youtube.com/watch?v=bhD75zYz92M.

Here are the Follea Breast Cancer Wig Giveaway instructions, which can also be viewed at http://www.facebook.com/follea:

1. There are two different ways that a woman with breast cancer can be submitted for a chance to win these prizes:

• A woman with breast cancer can create and submit a short video about her journey with breast cancer, how it has affected her life, and how she is dealing with it.

• A friend or family member of a woman with breast cancer can submit a video about how their loved one who has cancer inspires them.

2. Submit video by Sunday, November 18, 2012 at 11:59 pm PST.

3. All winners, including grand prize, second place and third place winners, will be determined based on the number of votes a contestant receives, in comparison to their competitors. Voting closes Friday, December 14, 2012, at 11:59 pm PST. :

• The grand prize winner will receive her choice of either Follea’s Gripper-2 Sport or the Gripper-2 Cool, from Follea’s innovative and luxurious 2012 Gripper-2 Collection. The winner will select from one of five standard sizes and available standard color and length specifications.

• five second place winners will receive one of Follea’s beautiful, short-style, premium European-hair Tres Chic MM6 wigs.

• 50 third place winners will receive one of Follea’s super-soft bamboo sleep caps.

4. Follea will announce the winners on December 17, 2012 at 12:00 pm PST.
Also, every Friday through December 14, Follea will conduct a random drawing of all of the contestants’ names, giving all participants the chance to win one of Follea’s bamboo sleep caps every week.
About Follea: The company’s 2012 collection includes wigs and hairpieces that are specially designed for women with little to no hair such as the Gripper collection, which is light, breathable and stays securely in place with affixed medical grade silicone tabs. Follea has ICARe representatives and ICARe salons around the world, so women can get hands-on help choosing just the right wig or extensions to suit their needs.
Would you like to receive any additional information?
Best regards,
Lisa Elia
Lisa Elia PR
310-479-0216