The Weapons we Fight With!

In yesterday's post we shared about The Cost of this Pancreatic Cancer Journey...

Since writing that post, over 120 people have lost their battle with this beast.  120 Loved Ones have fought for their lives against a ferocious opponent... and lost... in the last 24 hours.

Pancreatic cancer does not play fair.

In that same time, 150 people have been devastated hearing the words "You have pancreatic cancer," and they are just beginning the fight.

The burdens are heavy for those walking this road.

The way I see it, there are 2 choices.

Give up.  Or Fight.

And I am not really Warrior material or anything... Fighting has never been my go-to.  I'm pretty much non-confrontational, you know, the peace-maker of the bunch. But when cancer came to call at our home, something rose up inside me.

For a solid year, we warriored harder than ever before.  Mom's pancreatic cancer diagnosis wrecked us... and we fought it like crazy people

We researched, we prayed, we pleaded, we sought 2nd opinions, we trudged through treatments, we tried alternative methods, we refused to give up.

This is what fighting a cancer diagnosis can look like.  And if you're here, then you already know that.  Everyone fights a little different.  We all pick up the weapons that fit best and here are some of the best we've found:

1.  Knowledge.  We've said it over and over... Knowledge is power.  Know your cancer.  Know your options.  The place to start is at one of these pancreatic cancer associations:

Pancreatic Cancer Action Network

Lustgarten Foundation

Pancreatica

2.  Gather your medical team... persevere until you find a doctor you trust... they will be holding the line for you when the chips are down.

3.  Know your Tumor.  Ask.  And ask again.  Badger your doctor if you must. But apply to have your tumor tested with the Know Your Tumor protocol.  Seek information on your tumor to find the most effective treatments.

4.  Explore Clinical Trials.  They are our best hope for finding a cure.  It just takes one break-through to change the course of this battle.

5.  Surround yourself with your people.  Loved ones, family, friends.  Let them help, lean on each other.  I can't say it any plainer... let love carry you through when the hard overwhelms.  For some this will be easy, for others not so much.  But find your tribe.  When you do, amazing things begin to happen...

    - Run, Bike or Walk to Support Pancreatic Cancer Research

    - Attend a Purple Light Vigil to raise awareness of Pancreatic Cancer... We Honor. Inspire. Remember...

    

    - Write a Cancer Manifesto... trust me, you'll want to read this Love Story from Jen Hatmaker!

    - Find a need and fill it... like ChemoCar or Developing an Early Detection Test for Pancreatic Cancer or maybe even finding a tiny place on a website to Encourage and spread Hope.  When your passion and your purpose collide, lives will be lifted up and forever changed.

    - If you are the Caregiver, then Be the Gift... you are a Meal Bringer, a Hospital Sitter, a Card Sender, an Appointment Keeper, Insurance Organizer, Attentive Listener, Kleenex Provider and Love Giver.  You are Blessing in this nightmare... never doubt your ministry over the Cancer Warrior!

6.   And finally, Just Breathe... take a deep breath and get centered.  Let Hope settle over you like the answer to prayer it truly is ... God's strength as He holds us close will always, always give Grace enough for the journey.

Warriors rise up... Choose the Fight... It is past time to end the terrifying reign of Pancreatic Cancer.

We do this in Honor of and in Memory of the Valiant Heroes in our midst...

The Cost of this Pancreatic Cancer Journey

Over these past years it has been the most humbling privilege to walk alongside so many extra-ordinary, amazing people on this journey....

We've shared their stories... often.  And always, I am reminded of the heart that beats behind every pancreatic cancer diagnosis.  It beats strong and, without fail, it bears testimony to the love that makes life so infinitely precious.

There is Julie... passionate, strong and inspiring!  After losing her father to pancreatic cancer just 35 days after diagnosis, she turned her grief in to action.  And the Marathon Goddess was unleashed!  She is well on her way to fundraise $1,000,000 to find a cure.

And there is Ted.  His story could be written by so many pancreatic cancer patients.  The diagnosis, the treatment, the wrestling with living life well in the shadow of a terminal illness.  And yet, he chose to be an encouragement to others in the midst of the struggle.

Here is Jeanne's story... A nurse, just like mom, Jeanne was a passionate advocate for the Pancreatic Cancer community.  To honor her memory, her precious family rode in Purple Ride Minnesota in her memory just one month after she passed.

Kathryn pegs the cancer journey perfectly in her interview; "Cancer is not for wimps."  And she is first and foremost a Cancer Warrior!  Her story is inspiration and hope for every pancreatic cancer sojourner.

Michelle honors her husband's memory with grace and love, as well as shares her thoughts on a sensitive topic at My Big PINK Soapbox.  She speaks to a deep place and I love her for it.

The Beauty of Gayle's story... and her Sweet Inspirations...  Gayle braved a horrific diagnosis with a confident joy that speaks volumes and just completely undoes me...

And I could not love Glenn and Cheryl more... theirs is the sweetest love story... losing Cheryl to this despicable cancer was a blow that still hurts..  And yet Glenn honors their lives together with a costly and steadfast faithfulness.  It is a true picture of grace in this journey.

There are so many more... Pancreatic cancer is just taking too many precious lives.  It has to be stopped.  Together we can be the most formidable foe pancreatic cancer has ever met.

Join hands with me?

We take a stand, united...  choose your weapon and let's fight until no one ever has to hear the words...

It is pancreatic cancer and there is no cure.

We warrior on... Together!

Frank Germano Survives Pancreatic Cancer

Frank makes me smile.

He is a lot like my Chemistry professor in college.

Straightforward, to the point and no-nonsense.

He has a website at FrankGermano that is more scientific than melodramatic (he is an Aerospace Engineer after all!)   And out of all his posts, there is one small entry about beating pancreatic cancer.  Hello?!  I've made a practice out of shouting such good news from the rooftops!  But that's just me... lol!

Would you like to hear what Frank has to say about cancer?  And how he treated his pancreatic cancer... the very deadly, most dangerously ruthless kind of cancer?

Me too!

Here is Frank's post, dated October 22, 2015:

"Here's a list of what I used in my battle with cancer.  Since so many are in need of this info, I'm making it publically available.

First off, I lost both parents to cancer, back in the 1990 and 1993 years, I watched them suffer through Chemotherapy as well as surgeries.  I also watched each take their last breath.  Not pleasant.  I've lost almost all relatives on each side die of cancer, 14 in total, so I knew cancer risk was high in my family.

In the late 80's, I had an emergency appendectomy which ended up being a tumor (malignant) surrounding the appendix.  That started this ordeal.  In 2008, I was diagnosed with thyroid cancer.  Surgically removed.

Just this past year, 2014, I'm rushed to the hospital with crippling pain in the abdomen, and I undergo emergency gallbladder surgery.  Then the fun starts... I get told there's a large mass under my right kidney.  It's diagnosed as malignant.  Another surgery.  At this point, I'm just agreeing with the doctors and saying ok to surgery.

With the kidney and the cancerous tumor, they diagnosed that as having metastasized from the Pancreas.  The tumor on the lower right kidney was removed surgically, as well as the margins.  Then the doctors informed me of first a single, then multiple tumors in the pancreas.  I was treated entirely at the West Los Angeles CA VA Medical Center.

Over the course of three months, from first being told of pancreatic cysts/tumors, cancer, I opted to not take Chemo, no radiation, and certainly no more surgery.  The items listed below are what I started taking.  The Third MRI showed no hot spots and a biopsy revealed previous tumors had been reduced to shells, with (so far) no further trace of malignancy and spreading.  Although in remission, is "cancer" ever really completely gone?  All I can say is I'm very, very happy to be alive.

Number one is getting your body alkaline vs acidic.  Lots of good sources for this, from the Kangen Water Machine, the John Ellis Water, which you can even get on eBay in gallon Mylar bags cheaply, or store bought.  Avoid all sugar.  Try to cut the starches.  Keep hydrated.  Do a Google search for "cancer diet" for lots of other smart food choices.  The list of what I added is below.  This came from research I did on Steve Jobs and his battle with cancer.

Note:  I'm not a doctor.  All of "this" came from my own research, and the info is available all over the internet.  What I can say is that something worked in my case, and I obviously still have my pancreas and did not opt for any further surgery.  Here's the list -

Turmeric and Black Pepper (1 tsp ea mixed with Olive Oil and add to water or any drink)

Neuroquell - Use Neuroquell PLUS as there is 37% more potency vs the Neuroquell and use 6 drops added to any drink or smoothie.  This stuff was designed to eliminate all pain topically so it's also great if you have discomfort or pain associated with cancer, anywhere.  Read up on it and decide for yourself.

Mangosteen and Graviola capsules

Wormwood (Artemesinin) capsules taken with a good iron supplement.

Lei Gong Teng (Google this, and find a supplier.  It's a Chinese remedy, and simplest to find in a tincture)

You can get these at Vitacost or most online herbal sources."

And that is Frank's post on pancreatic cancer.

Who says a Story of Love has to be all mushy with emotion?  Thanks Frank for sharing Hope for the Journey!

ChemoCar and the Bolster Story

Paying it forward!

This Story of Love begins with a pancreatic cancer diagnosis and turns in to a beautiful tribute that renews our hope in the resilience of the human spirit ...

When Zach Bolster's mom discovered she had pancreatic cancer, their whole world was turned upside down.   And it quickly spiraled out of control as her health deteriorated and she subsequently passed away just 5 short weeks after her diagnosis.

Zach shares that his mom, Gloria, was the glue that held his family together.  As soon as he heard her news, he left his job in New York City and returned home to North Carolina to be with her.

For Gloria, the journey began with a pain in her shoulder.  She thought it was a pulled muscle, but the truth was so much worse.

Although they had no idea how long she had left, they knew it wasn't a good prognosis. But, 5 weeks... it wasn't nearly long enough.

While home with her, Zach, his wife and other family members went with Gloria to all her appointments and chemotherapy treatments.  It was during these trips that Zach made a disheartening discovery.

"My family was shocked by how many cancer patients had difficulty getting to their chemotherapy treatments.  We soon realized what a huge financial and family burden transportation can be during cancer treatments.  Some patients resorted to riding the bus, others, unfortunately, missed their treatment altogether."

In an effort to make a difference, Zach began volunteering as a driver for patients who needed help getting to treatment.  He and his family soon realized this was a cumbersome task at best, his older sister joking that offering the patients Uber rides would be so much simpler.

Zach had to agree she was right.

And ChemoCars was born.

Using their own money, Zach and his wife started ChemoCars.  It uses software that integrates with Uber and Lyft to arrange safe, on-demand rides for cancer patients to and from their treatments.  They also work with cancer treatment centers to identify patients who might need this helping hand.

Currently it is available only in Charlotte, NC and Amarillo, Texas.  The company is growing and hopes to someday be available nationwide.

It is a gift born from their deepest sorrow.  I know that Gloria must be so proud of her family.

And the beautifully poignant part of this story is that when you call for a ride from ChemoCar, you are calling his mom's old cell phone #.

You, Bolster family, are paying it forward in the most beautiful of ways!

When our Cancer Journey Doesn't End with Happily Ever After...

Just months before mom's pancreatic cancer diagnosis in 2010, a brave, young woman was sitting in a doctor's office receiving the very same diagnosis.

Her name was Dayna.  And she, too, decided to start a CaringBridge site to keep family and friends updated on her progress.

For weeks, months and now years, we have been following the cancer journey of this beautiful soul...

Dayna shared her heart with sweet humor and breath-taking candor... One of her signature sign-offs was to list "3 Things I Loved about Today."  She had a gift for gratitude that simply overflowed, despite the most difficult of circumstances.

On August 13th, 2014, we read her husband's last entry on their CaringBridge site...

"Forget the strong man; this one is about the strongest woman I have ever met.

She was told she had merely a few months left with us and went on to live a few months plus four years.  Later, after 7 different types of grueling treatments, she was again told to get things in order.  Told she likely had a few days, she stretched those few days into months.

Ultimately, cancer picked the year, the month, maybe even the day; but our darling Dayna picked the moment to let go.

Just days before her passing Dayna wanted me to post on Facebook and CaringBridge that she was in the hospital again.  However, after comparing herself to the boy that cried wolf, she asked me not to once again tell everybody that this was "it."  Instead, she said I should "just tell them I am on a teeter-totter."  I promised I would post for her.

My intent was to do so sooner.  Please forgive my tardiness; I was busy loving and enjoying her 24/7 until Friday morning, and busy loving and mourning her since.  As she requested, I will give you a brief account of her last days, but first something to make you smile.

When Dayna asked me to write on her blog she said to write it in my own style, but "be sure not to forget the poo and the pee, you know, the good stuff."  That left me with a bit of a dilemma, as those are not subjects that I am very comfortable talking or even thinking about.  All the same, I will share a moment that I think shall suffice.

Rick, Dayna's hospice nurse came to the house one day not long ago to check up on her and see if we were in need of anything.  As he sat down on the ottoman and began the barrage of questions that are routinely thrown at patients, he asked:  "Dayna, how are your bowels moving?"  Without hesitation and in a sincere tone, Dayna answered: "good, and how are your bowels moving Rick?"  Looking to the ceiling while contemplating, he took a few seconds and then answered Dayna "pretty good.  You know, in all my years on this job, nobody has ever asked me that question before."  "Hmm," she replied with a shrug, "It only seemed polite to ask."

And that was classic Dayna: quick, witty, sincere, caring, funny and controlling the room with that signature smile throughout it all.  A combination that always put a smile on the faces of those who luckily shared time with her.

At 7:50 AM on Friday, Dayna and her smile moved on to a place I like to believe is gentler, kinder and more peaceful (with a lot of dancing).  The Saturday prior she had trouble breathing at home and needed an ambulance to bring her to the U of M hospital.

There she spent a couple days highly sedated and in a breathing mask that enclosed much of her face, completely surrounding her nose and mouth.  She didn't eat and would periodically drink through a straw when we quickly unhooked the mask and pulled it to the side.  Worst of all, she could hardly communicate:  her mind was jumbled from the high dosage of medications to suppress her shortness of breath, and the mask itself, which actually forced air into her lungs, made it difficult to be heard and really frustrated her when she tried to communicate.  She resorted to writing things down.  She persevered, and managed to get all the things she wanted organized and carried out communicated to her girlfriends, family and myself.

A beautiful thing happened halfway through her nearly one week stay:  we found a high flow nasal canula that allowed Dayna to remove the big oxygen mask.  It freed her mouth and allowed her to be heard when she spoke and she began eating.  Like always, I began thinking she was on the mend and we started looking for breathing devices to get her home again.  I even sketched up my own high-flow system to be made at home after the medical supply store told us that there wasn't an at home option.

With her breathing seeming stable and her will to converse with visitors we opted to lower her meds to find a sweet spot where she was lucid as possible without having panic attacks from the shortness of breath.

We found that spot for a couple of days, and she was still hoping to make it back home to her own bed.  However, the disease was still doing its thing and it was eventually realized that going home would no longer be an option.  Bravely, politely, she asked only to be moved to a bigger room where more people could comfortably visit her.  They made it happen.  Happily.  And perhaps with a nudge from wonderful Dr. Lou Emil.

On the transport from one room to the other she had a terrible panic attack that took some time and meds to calm.  It was horrifying to watch and no person should ever have to endure such fright.  This is the true pain that I am happy and grateful that she will never again be faced with.

Thankfully, that evening was nothing short of beautiful.  Friends and family came to visit.  I drove home and brought her back a surprise.  Stella licked every salty inch of Dayna's face and arms, and Dayna smiled and sobbed with tears of joy.

That evening the guests left and my parents took Stella back home.  Dayna's father, George, and I remained.  She asked me to pull up a seat on her right hand side, and her dad sat in the recliner on her left.  We shared some cupcakes the nurse so kindly brought us, and Dayna chatted and chatted, refusing to let either of us go to sleep.  I didn't want to anyway; it was the most lucid she had been since being admitted.

The three of us held hands until around 6:30 AM.  "My two favorite men in the while world," she affectionately said at one point... It was so magical that I should have known it couldn't last.

The fact that she was so lucid probably had much to do with the fact that the infused drugs were losing a bit of their effectiveness, and because of such they were not able to do their job at suppressing her shortness of breath.  She had another breathless panic attack, and ultimately had to be put back in the restrictive full-face mask.  Once again, the horror of her panic attack is hard to put into words.  After some time of quiet thinking, she made it known that she could not face further days of breathless torture.

What happened in that last hour is very personal.

She chose to remove her oxygen mask.

We held her hand and whispered kind words.  And at one point she told her father and myself  "thank you guys.  I know this isn't easy for you."  Thinking of others right till the end.  It was awesome and awful.  And I am so thankful that I was with her through it all.  I am also very thankful that her father was there as well.

In the next hours we made contact with family and friends and a few came to say goodbye.  After breaking the news to one of Dayna's dearest friends, she asked me to whisper a message into Dayna's ear.  I did.  And then I sat back up and just stared towards the window.  Suddenly, something tapped me in the back of the head.  Startled to the bone, I looked around but nobody was near me.  I looked up and down.  Nothing had fallen.  There was some force that bumped my head.  Maybe it was the non-coincidental sign I asked her to give me.  Maybe it was her letting me know I didn't need to whisper to a broken down vessel that no longer confined her.  But it was Dayna.  No maybes in my mind. 

Now to end it with a smile.  Going back to right before they transferred her to her larger room.  She sat at the edge of her bed, excited about hermove, and evidently even more excited about seeing Stella.  It had been five days since she had last had a dose of puppy love.  I carried the second load of belongings to our new room down the hall and walking back into the small room I saw Dayna throwing her hands over her eyes, and holding that smile that seemed to grow by the second.  

"What are you doing, Silly?" I giggled.  "Wait, wait," she said.  "Do you like games?  Let's play a game."  Hands still firmly over eyes and smile big as every she asked, "Who are you?  Do you have hair all over your body?"  (Um...some but not all over)  "Do you like to lick me all over the place?" (Dayna, I think...)  "Is your name Stella Bean!"  She tore her hands from her face and looked around for the dog.  Laughing, I explained to her that I only left for two minutes and the very minute they moved her into her new room, I would quickly go home and get her Stella Bean.  And they did; and I did.  And seeing how ecstatically happy both Stella and Dayna were when they were reunited was pure beauty to behold.  Exactly, I bet, what it is going to be like when Dayna and myself reunite too.  I can't wait.

There was a moment that day, either when being silly about guessing if Stella was visiting or just making the nurse smile like she always did, when Dayna said, "Isn't it fun talking about serious things in a silly way?"  I know she thought it was fun.  That was what made her journal entries such a joy to read for everybody.  I know that all her CaringBridge fans helped her get through the rough times and helped her celebrate when the days were great.  On behalf of Dayna, the strongest person I ever knew, and myself, thank you all for being part of this wonderful Circus.

Three things I love today:

1.  Realizing that I could never again be scared of death, knowing she is waiting for me.

2.  That she left Stella Bean to watch over me for the time being.

3.  The love and support of family and old friends and all the amazing friends and family I gained through Dayna.

I love you Dayna.  Smile down on us today  :)"

Sometimes our cancer journey doesn't end with that Happily Ever After... Sometimes we fight endless battles only to lose the war.  It will never be fair.  Never be right.

Dayna's Story of Love has touched me and stayed with me in ways I could never explain.   Perhaps it was the way her husband shared he could never again be scared of death, knowing she was waiting for him... It is a haunting grief framed in the most beautiful of love stories...

Thank you Dayna for being a beacon of hope on this dark journey.

You have been a Priceless Gift...

Sunday Inspired ... Hope

Living Proof!

I love the giving spirit of so many of our Cancer Warriors.  After going through the most horrendous of journeys, they are quick to share encouragement and hope with their fellow sojourners.

Billea is one of our favorites.  She shares her story on our Whipple Testimonials with humor and honesty and a big dose of that Fighting Spirit!

"Every once in a while I check in on the pancreatic whipple world.  I do this just to sort of check in and see what's up.  I don't do this often, because usually I just get freaked out more than it does any real good.

When I first started this journey, I couldn't read enough about it.  But there weren't many (hardly any) positive stories.  Mostly gloomy doomy.  The kind that scare the crap out of you more than anything.  So that's why I'm writing my story.  I want there to be at least one more story that has some good news for all of you out there that are either getting ready to have a whipple or still very early into healing from one.

For me this all started with a kidney stone.  At the time I thought it was really bad, but with hindsight now love that kidney stone more than just about anything.  From that we found out my liver was enlarged, and from that I found out that I had a neuroendocrine tumor at the head of my pancreas.  I was beyond lucky.  Finding mine by total accident.

I am a 41-year old mother of five.  Two of my own, three I am lucky enough to call mine after I re-married, and Nana to six.  I worked full time and considered myself pretty healthy.  And now I'm being told I have cancer.  It's a lot to take in in a short amount of time.

I had my whipple surgery on December 1st, 2015 at the OU Medical Center in Oklahoma City.  I spent three days in the ICU, and then five days in a regular room.  When I first woke up from surgery, I had a tube coming out of my nose, two coming out of my right side, and a catheter.  Not exactly comfortable to say the least.  But I had great nurses and a team of doctors that took really good care of me.  After they took the tube out of my nose, I started throwing up, so we had to put it back in for a little longer.

Of course, they want you up and moving and you have all this crap attached to you so it takes forever just to get out into the hall.  But it did get better. And I started losing all of the attachments one at a time.  I didn't have any complications.  No infections or blood transfusions.

I did find out after the surgery that it had spread to two lymph nodes.  This was a blow, because we were really hopeful that we got it all with the surgery.  So I was told that I would be doing chemo.

I lost my mother earlier in the year to cancer.  I had seen first hand the struggles she went through with chemo and radiation.  I was really upset at first, but then I just remembered how brave my mom was.  So I pulled myself up by my boot straps and decided okay, if this is what I've got to do, then by gosh, let's do it.  By my last night, my arms were pretty shot from the potassium in the IV's.  But other than that, I was doing really good.

Once I got home, I did drop some weight, but got it back pretty quick.  Then, on December 23rd (just in time for Christmas) I had a check-up with my surgeon.  Found out that I wasn't going to have to do chemo.  I was off work for three months.  And by the end of it, I was ready to go back.  To get back to normal.

And so, here I am almost five months out from my surgery.  About 95% back to normal.  A few changes, but under the circumstances, they are tiny.  No more alcohol of any kind...ever.  But, hey, that I can do.  A little more gas than before.  Some really nice new scars for my brag book.  The other 5%??  Well, I don't think you can ever be 100% normal after something like this.

I have to get checked every six months.  I know that there is a chance it will come back.  I know that I may have to do chemo in the future.  Life is a little bit more uncertain for us, but if I were honest it never really was before anyway.  Even if we like to think it is.

My hope is that whoever reads this, whether it's for yourself or someone you love going through it, please stay positive and don't give up. There can be a happy ending.

I am living proof of it."

Yes, Billea, you are honest-to-goodness living proof of the power of staying positive and never giving up!  You are our Happy Ending for today!

Sharing your Story of Love puts a smile on our face every time!

Love and Prayer and Blessings in Abundance,
In Grace, Always,
                       Jane