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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.

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

The Daily Post’s Weekly Photo Challenges

Weekly Photo Challenge: Lost in the Details

The Daily Post’s weekly photo challenge topic for this week is: Lost in the Details.

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cancerinmythirties.wordpress.com breast cancer thirties 30's 30s hydrangea flowers blue

cancerinmythirties.wordpress.com breast cancer thirties 30's 30s corning museum of glass lost in the details young

cancerinmythirties.wordpress.com breast cancer thirties 30's 30s corning museum of glass lost in the details young

To participate in this week’s photo challenge, please visit:

http://dailypost.wordpress.com/2013/03/01/weekly-photo-challenge-lost-in-the-details/

or

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

Thanks for visiting!

Weekly Photo Challenge: Forward — Boys at the Beach

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cancerinmythirties.wordpress.com breast cancer thirties 30s 30's beach kids forward young

cancerinmythirties.wordpress.com breast cancer thirties 30s 30's beach kids forward young

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.

cancerinmythirties.wordpress.com breast cancer thirties 30s young dog dogs illness

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And my boys…

cancerinmythirties.wordpress.com breast cancer thirties 30s sick dog dogs illness

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/

 

Weekly Photo Challenge: Illumination

Weekly Photo Challenge: Illumination

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

The Daily Post’s Weekly Photo Challenge

Weekly Photo Challenge: Illumination

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cancerinmythirites.wordpress.com breast cancer young 30s illumination daily photo challenge kids

cancerinmythirites.wordpress.com breast cancer young 30s illumination daily photo challenge kids

cancerinmythirites.wordpress.com breast cancer young 30s illumination daily photo challenge kids

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.

cancerinmythirties.wordpress.com breast cancer thirties 30s weekly photo challenge surprise motherhood mom young

Weekly Photo Challenge: Surprise

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/2012/12/21/weekly-photo-challenge-surprise/

Weekly Photo Challenge: Changing Seasons

A collection of photos for the changing seasons:

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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!

Follea’s Breast Cancer Wig Giveaway

cancerinmythirties.wordpress.com

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