Always Be Yourself....Unless You Can Be a Pirate, Then Always Be a PIRATE

Yo ho ho, a pirate's life for me.

....inside my mind......

Week Three/Chemo + Radiation- Check!

Week Three is complete and with one more treatment we are exactly middle of the project.  

This week was tougher, as is expected.  Nothing drastic, just a little tougher as both radiation and chemotherapy are progressive.  The Pirate Husband was more tired but nothing that resting didn't kick.

Our mindset changed this week and we decided to declare ourselves on holiday.  We kind of overdid the whole eating out and partaking of all kinds of desserts, liver pate', breads, pastries, corned beef on rye....yeah, we blew it. But who the heck cares? Well, maybe our naturopathic doctor, she cares because she gave us studies proving sugar feeds cancer cells and she is such a wonderful woman, I hate to disappoint her.  We both agreed to cool it in the eating whatever we want department and get back to our mainly fruits and vegetables diet.  The Cleveland Clinic doctors are thrilled he is gaining weight.  They all say, "Any calorie is a good calorie."  We used that excuse every single day.  We don't live like that in normal life and we are not going to continue in the new normal life.  What was I thinking?

Well, I will tell you what I was thinking.  That if every darn day is lived with carrot, beet, apple, ginger juice and Ezekiel bread, that is a pretty boring way to spend life.  We might both be hit by a bus tomorrow and will I have been so strict as to smack the Amish biscuit out of the Pirate Husband's hand?  No.  

That annoying moment when someone tries to steal your food:  Say yer prayers, varmint!

There's a lot of nervous eating and cleaning going on at the Hope Lodge.  Some people bake.  Some are out there in the gardens weeding and watering (that'd be Marie).  These people are facing battles against death.  Sometimes a piece of chocolate cake can be just the answer.  It always melts away my troubles and I don't blame anyone dealing with the life and death trials of the cancer battle for sharing a dozen Krispy Kremes.  It is the same for the people who are constantly cleaning.  Good for them.  If it makes them feel better, have at it.  I have done that a few times there myself.  

About half of our newly made friends over the last three weeks left.  We are welcoming the newbies but it is not as easy as when we were new - just three weeks ago - and they all welcomed us.  They have left with our prayers, best wishes, and addresses.  I sure hope they make it.  I can't understand sending home folks at their weakest point and telling them to go home and get strong, come back in three months, and we'll let ya know if it all worked.  Gosh, I hate cancer.  

It irritates me to see the slogan, "March for the Cure"...what about marching against the cause?  Marie, our Amish friend, told me that four of the neighbors on her block have just developed cancer, and the next door neighbor has the exact same cancer as her husband.  What the heck caused that?  Are any of these doctors tracking where these folks live and why they may have developed certain types of cancer?  I mean, come on, have you seen the Cleveland Clinic?  It is a multi-billion dollar business that engulfs city blocks - blocks - and has campuses throughout the neighboring suburbs, not to mention clinics in other states and countries.  I don't know.  I better get off that soapbox because I am not Erin Brockovich.  But there should be more like her.

My oldest son says I need to ramp up my humor.  How?  I've got three jokes that I have been telling for the last forty years.  That's all I've got.  He said that laughter is a great medicine but the Pirate Husband is not an American, he doesn't find funny what we find funny.  Although, he is funny and we do laugh every day.  

Perhaps I have a negative outlook on life as I drive the highways of Ohio and see nearly a third of all the trees dead and without leaves.  What the hell happened?  What is going on?  Should I throw on some rose colored glasses and see the glass half full?  Two thirds of the trees are flourishing.  Whatever happened to that Erin Brockovich anyway?  

Lame Ass Offer

Week Two/Chemo+Radiation - Check!

Week Two:  One third of the way finished with the first leg of the protocol.  We are getting the hang of things living away from home during the week and finding our way around Cleveland pretty well.  

There haven't been any huge signs of side effects except fatigue, which of course, the Pirate Husband denies vehemently.  He is also experiencing dizziness and a wee bit loss of balance.  Currently he is attributing this to lack of water (which most likely isn't the cause - he drinks almost a gallon a day).  This began yesterday and the lab tech who drew his blood brought him out in a wheelchair.  He promptly ordered me to push him down the nearby flight of stairs when I couldn't manage to untangle our wheelchair from an empty wheelchair sitting in the full waiting area.  His excuse to the crowd, "Women drivers."  My excuse: hands full of purse, notebook, water bottle, his lightweight jacket, and nervous worry seeing him in a wheelchair.  We ditched the wheeled contraption and he walked himself back to see the nurse.  Walked himself?  He strutted like a peacock.

Uh, hell no...not joining this club yet.

My persistent question this week is "why"?  That is probably every cancer family's question.  This week has been an internal struggle with the "why" and the fear.  But I have to say with some prayers answered I have a better handle on peace anyway.  Learning lessons and walking beyond the fear.

Jaa Karhu at Hope Lodge from Ivan

As we live in our group home setting we can't help but become involved in the lives of the other folks living with us.  

Near and dear are Linda and Sam.  Same age as the Pirate Husband, enjoying retirement, Sam is an associate pastor and retired marine, woke up one morning a couple of months ago with a brain tumor.  When we left yesterday he had been hospitalized.  Prayers for Sam.  He was so weak and Linda was devastated.  

Also cherished are Dave and Marie.  Oh my word, talk about cuteness and spunk.  They have been married for 49 years and Dave woke up one morning feeling like he had the flu but it was a type of blood cancer.  They are Amish from Geauga County and we usually sit with them during dinner.  

Dave and Marie

Then there is Carmen...I might as well call her Carmen Electra!  She is a beautiful sassy gal from El Salvador.  Well, when she met the Pirate Husband, she nearly swooned.  Ha ha ha....it's true.  I LOVE her!  She said to him in her honeyed Spanish accent, "Ooooo, yo' eyes are sooo blue!" She wanted to hear the story (again!) of how we met and she even jumped in at the right time and shouted, "And THEN you keeesed her in the elevatorrr!"  She is the caregiver (I call her an angel) to her grown daughter who had bone cancer in her hip and had her leg amputated.  Brave lady, Laurita, brave and strong.  Carmen arranged for her son-in-law who was coming for a visit from El Salvador to bring glorious coffee from her sister's coffee bean farm!  

Coffee with the LORD at Hope Lodge

Come and gone was Vicky who was a sweet lady that I shared Bible study notes with; Mike and Sherry battling the tumor in his lung with a clinical trial; and about four or five more couples who headed home.  But the waiting list is always full for our Hope Lodge and new couples arrived.

We try to walk twice a day around the Little Italy neighborhood of Cleveland.  The Pirate Husband isn't going to just lay around in bed even through high doses of chemotherapy and radiation.  No way.  That is not his style. So, we go on adventures and spend most of the time laughing along the way.  That's right, he's not only handsome and charming, he can be quite funny!

First Time Bingo Player...yes, we sure did!

Three Time Bingo Winner - Oh, Yeah!!

This week we discovered Presti's Bakery, darn it.  I say darn it because it is fabulous!  We had first ventured into a bakery spouting, "Leave the gun, take the cannoli," but the atmosphere fizzled before we even ordered.  Out the door we went and entered into a crowded, take-a-number and wait fifteen minutes, bakery and deli....always follow the crowd when it comes to Italian bakeries.  We devoured chicken caprese with fresh mozzarella and basil, thickly sliced bruschetta burdened with melted cheese, and the Pirate Husband partook of a meat stromboli.  I mean, come on - there is no need to worry that my man is going to waste away of cachexia.  And we didn't stop there.  No, we went all the way.  He had a custard filled cream puff and I had a double stuffed cannoli, actually we shared our entire meal and dessert.  

Presti's Bakery Little Italy Cleveland, Ohio 

How many weeks of treatment do we have left?  Is it enough time to sample these?!

Presti's Deli Side

So, maybe the last couple of years have been a huge adjustment to living apart.  I have praised the Pirate Husband's achievements along the way but I have had my tear-filled bitter moments that my life has been lived without him by my side.  I didn't ask for that, neither did I want that.  All his own choice.  Now here we are thrown together in a tiny room, 24/7 with zero down time by ourselves.  More adjustments.  Pirate Husbands are nothing if they are not Mr. Command Man (See the section on Mr. Command Man:  "Created To Be His Help Meet" ) so I adjust my sails and become the "yes man" to the captain of our ship.  This is in addition to the Pirate Husband giving up tobacco the day before treatment began...and we still manage to live and breathe and actually laugh.  

Second Floor Library

More than two years of my childhood was spent living in an orphanage.  Even though the Hope Lodge is super nice I just can't help but get the same deserted feeling when I stay there.  Maybe it is Cleveland.  I was born there and the orphanage is in a suburb of Cleveland.  And in the midst of all this upheaval a birth sister contacts me on facebook.  I mean, seriously?  I have enough already.  I have enough. It is enough to face the ugly reality of cancer and fight it with the Pirate Husband.  It is enough to worry over him with every chemo and radiation treatment.  It is enough to say goodbye to my home and family every Sunday evening to move to Cleveland for the week.  It is enough to leave my own life plans and put everything on hold just to survive.  All the fear and anger and questions and frustrations and adjustments - it is enough.  Someone said, "Oh, you will walk through this with the grace and kindness you always do."  Well, I don't feel like that.  I don't feel like being gracious or kind or giving.  But neither do I want to fail - fail God, or the Pirate Husband, or those who count on me. On Thursday I even closed my Bible, not looking for any answers from God and mad at Him for not arranging a detour around this scenario.  But then that evening came the Mennonites from Huron Valley....

With a warm - delicious - meal (yes, after the Presti's binge!) they were gracious and kind and giving - what I should be but needed.  They invited us all to hear them sing of God's love and the pastor gave a very short message assuring us that God does love us and He will carry us if we turn to Him and trust Him.  Just what my soul needed.  Just what my heart needed.  We all sang the old hymns, "Trust and Obey" and "It Is Well" - 

"Trust and Obey"

"It Is Well With My Soul"

Then there is just that tragic story of Horatio Spafford, the writer of "It Is Well".  He lost everything but he didn't fail.  He didn't fail God and neither did he fail his integrity.  I think I would have been inconsolable in his place.  Here is his story:  Horatio Spafford's Story, No Why, Just It Is Well


What am I whining about?  Came home to this:

Home, Sweet Home

Boy came tearing through the house, shouting for Granny,
then threw himself in my arms, and kissed my whole face.

Week One/Chemo+Radiation - Check!

Week One: So far, so good. The Pirate Husband faced the chemo and radiation with the same fearless aplomb that he does anything else. But that is just who he is.

I, on the other hand, have got to pull myself together. We are being lifted up in prayer by so many people - some we have never even met.  This is not the path that I have chosen but I will walk it every step with the Pirate Husband -by the help and grace of God.  I can only trust that the Heavenly Father loves us and is answering all those prayers:

The LORD Bless You and Keep You

Our new normal is different but nothing we aren't adjusting to rapidly.  We spend Monday through Friday living in a "group home" with other cancer-fighting families near the Cleveland Clinic and then recharge our batteries at home with the family on the weekends.

Hope Lodge Cleveland, Ohio

Week One Daily Walk in "Finnish Park"

Sisu Mies = I WILL Man!

Our family loves us. We couldn't make it without them.  Finnish side is calling, sending emails, videos, Skyping, and love and hugs from far away.  USA side is taking care of the yard, house, 4.5 pound Chihuahua, and meeting us at home on Saturday nights for family dinner.  Their love lifts us up, bears our burdens, and carries us through. Their prayers and great care mean more than anything. How much I love them all and am grateful beyond words.

Last night we were showered with hugs and love and presents and dinner....and maybe really strong margaritas. The daughters-in-law prepared a tasty and light Mexican dinner while the sons prepared the margaritas - woooo!!!!  Still smiling this morning. I know we can make it through another week.

Jose Cuervo....uh, yes, please! 

Lucille Ball, "Oh, wonderful, wonderful, wonderfullllll...."

He is Everything to Me

I Could Not Ask For More

Lying here with you

Listening to the rain

Smiling just to see the smile upon your face

These are the moments I thank God that I'm alive

These are the moments I'll remember all my life

I found all I've waited for

And I could not ask for more

Looking in your eyes

Seeing all I need

Everything you are is everything to me

These are the moments

I know heaven must exist

These are the moments I know all I need is this

I have all I've waited for

And I could not ask for more

I could not ask for more than this time together

I could not ask for more than this time with you

Every prayer has been answered

Every dream I have's come true

And right here in this moment is right where I'm meant to be

Here with you here with me

These are the moments I thank God that I'm alive

These are the moments I'll remember all my life

I've got all I've waited for

And I could not ask for more

I could not ask for more than the love you give me

'Cuz it's all I've waited for

And I could not ask for more

I could not ask for more

April Showers

May 2, 2015..."Starship Enterprise.....Space, the final frontier.  These are the voyages of the Starship Enterprise. Its five-year mission:  to explore strange new worlds, to seek out new life and civilizations, to boldly go where no man has gone before."

Starship Enterprise Intro

Just read the notes out of my April planner to the Pirate Husband.  The month that changed our lives.  

• Passover
• Opened a new business
• Flew to Jacksonville for spring break with the P.H.
• Drove home to Ohio from Florida with the P.H.
• Celebrated our anniversary 
• The Pirate Husband alerted me that he wasn't well
• Family Doctor visit
• Drove back to Florida from Ohio
• Put his boat, Sixteen Tons, up onshore
• Heard the P.H. say to his boat, "Oh, I love you, baby."
• Drove home to Ohio from Florida
• Tradeshow in Indianapolis 
• Death of a dear friend
• Bought a new car
• Family dinner - very blessed
• Contacted by an unknown birth sister 
• First Cleveland Clinic appointment
• Tests, tests, and more tests = stage III colon cancer
• Overnight trip to the Cleveland Clinic 
• More tests, two additional Cleveland Clinic doctors

It's ironic how that quote from "Star Trek" came to mind. We are certainly going where we haven't been before - not confident of how boldly, however; we are truly seeking out life, exploring the strange, new world of radiation and chemotherapy, and the lead doctor did promise five more years.

For the record, five more years - pfft...yeah, right.  That Pirate Husband owes me at least fifteen more of his original promise, as well as two additional years for his time away on his "life journey"/boat adventure.

When your life is on the line, who do you trust?  The guy in the white coat?  The studies from online medical journals? The testimonials of people who chose surgery, followed by super healthy lifestyle?  The Cleveland Clinic, a multibillion dollar company (business is good)?  Suzanne Somers? Clinical trials of immunotherapy at Johns Hopkins?  The information on the Internet?  Disinformation on the Internet?  Whose statistics can you believe?  

The plan is neoadjuvant therapy.  Five and a half weeks of hard-hitting chemo and external beam radiation.  Then an eight week "rest" - recovery.  Surgery.  Four and a half additional months of chemo.  Since the Pirate Husband may someday read this blog post, I will forego the description of my greatest chemo fears.  He knows I am against chemo but his hope is that it will destroy all the rogue cancer cells once and for all.  My hope and prayer is that it doesn't destroy him; that would destroy me.

Our family has a very deep faith in the LORD.  He carries us. He also allows us to make our own choices.  He still carries us.  

I cannot say that I don't have peace; I do.  But I cried those April showers....what will May bring?  Week one:  ten appointments at the Cleveland Clinic - just in week one.