Thursday, December 11, 2014

What happened was this….

I've really had some major issues these last few months.  They stem from some things that happened and didn't happen and I had an opinion about those things.  It basically started as having a few trust issues.  I felt myself pull away from wanting to be a part of my community.  I know this is vague- it's going to stay that way.  When all of these feelings were added to August 7th (that's what I call it, the day we learned too much at the Mayo Clinic) I just wanted to disappear.  I usually do disappear for processing the bad information and everyone has always given me the grace to do that.  But, to put it quite bluntly, this time the end seemed closer than fighting could take me.

During this darkness I expressed to Tim that it's time to start making some memories as a family.  Of course we've always made memories.  But I meant the BIG memories that would just last forever because of their BIGness.  I don't want to be attempting to make memories when I am so sick I can't actually participate-you understand?  When I am at that point, you guys get to come to me to make memories, but that time will be more private.  Now to be clear, I am not close to that place right now, like I thought I was on August 7th.  My current chemo is working, I feel pretty good, the chemo is not very harsh and it didn't cause my hair to fall out!

So what I wanted to do to make memories is go to Disney.  We've only been once as a family and I was pregnant with Jay so he sorta missed it.  My idea was to go for Christmas, relax and let that be our gift.  I started looking into it, pricing it, looking at what we have for bills and such and just got so disappointed.  A $5,000 was just not happening, memories or not.  So I just kinda gave up on that one.  Then this Groupon came to my email.  A vacation club renting their condo's for CHEAP!  I am a good bargain hunter and this was some bargain.  5 nights for under $600!  Yes I am serious.  So now I have to figure out the airfare and the days that are the least expensive to fly…. Weeks later flights for under $200.  Yes I am serious.  However there's still the cost of the parks- oh my!  No way around that one really.  So I gave up again.  I told Tim we'll just have to do a few weekend things while the kids are home….. On his way to work that night he called me and said that we needed to just do this.  Book it all and we'll figure the rest out.  I was so awestruck that he felt the importance of this memory making like I did.  Although it hurt my heart that he understood.  That night moved us into longer, harder but important conversations.

So, maxed out AmEx, here we come.  Disney here we come!  We leave Tuesday-Sunday.  On Monday before we leave I have my Avastin medication which really had no affect on me physically.  The day after we return I have chemo.  It's crazy and oh so wonderful.

So back to the trust issues.  Well I realized that I was having an attitude problem at least for some of it and decided that I needed to work on getting rid of that.  So I have been, while following the most amazing blog and story of courage and grace called Mundane Faithfulness.  I've posted it a couple of times and yes it is a very difficult blog to read but I feel so validated and understood at a level only someone in our position can completely understand.  Not like any difficult situation really.  Her book is really good.  Grace is what she is after and chasing with every breath she takes, every test and every next step.  Her next steps suck. Her name is Kara and I am obsessed with following her at the moment. Quite frankly, there just isn't time for attitude problems so I'm quitting them.  I've been given this grace to live each day I have for a purpose, and it's to continue to point people to Jesus.

So God's hand and feet- that's whoever you are- gave us a package of grace and blessing.  That's what happened.  2 nights ago we were ding dong ditched, except there was a twist.  My normal reaction is to fly out of the house running cuz I simply want to play too.  But something kept me calm.  I even gave them getaway time (altho the car was a bit noisy).  I went to the door, the front door, and there was this package with a Mickey Mouse silhouette on it.  Very interesting.  Ok I admit it, I opened it!  But then rewrapped it so that the kids could have the same reaction.  I think it's important for them to have to figure out what just happened.  Love just happened.  In abundance from your hearts to overflowing in ours.  The blessing was money for our trip.  I don't know who started this or why, but I am going to just say thank you.  Thank you for giving so much to our family over the last 6 years.  Thank you for your tears, hugs, prayers, and hugs.  Thank you for always asking.  And thank you for making my kids wonder about goodness and love.

I've decided I will not try to figure this one out.  I don't want to steal anyone's joy.  Just know we are so thankful, very humbled, and feel very loved.  This was a very unexpected, undeserved, and beautiful gift to our family.

Vicki and family

Friday, November 21, 2014

How to choose

My beautiful Grandma died on Nov. 4th at the age of 97.  97!  My dads mom died at the same age.  This Sharpe/Browne/Leatherman/Barth family have good genes.

My sister Sarah had been to see her a couple of weeks earlier, and Laura and I were heading there the 5th.  Mom called early on the 4th, and I took off right after Paul's funeral.  I've never packed so fast or driven to Chicago so quickly.  Mom and Dad left before me, thank God because they arrived in time to say goodbye, to hold her sweet hand, talk and watch her leave with a smile.  My mom missed that with her dad and brother.  My mom really needed that.  My cousin told Gram, the nurses told Gram, everyone told Gram that mom was on the way.  She waited, I know not by what power, but somehow she waited.  I got there about 2 hours later, but that's ok. I just wanted to be with my mom.  She is the teacher of toughness and independence, but at that moment, tough needs to be trampled.
We spent the next day making the arrangements and shopping and it was good.  The next we spent doing some shopping, hanging out with my cousins, the cousins who really took such good care of Gram. Then we spent an evening making grams 2 famous recipes for deviled eggs and orange jello.  I now know how to make it….. But I need an old Tupperware jello mold.

This loss, this choosing to wait to die until her daughter was there, just took me right back to Brittany Maynard and her decision to end her life.  People missed a lot of beauty in the journey of dying with purpose.  I'm not sure what dying with dignity is supposed to mean.  No adult diapers?  I don't know.  I do know that this journey of Grams had a purpose.  It's obvious to me…. but maybe not to others.  But the point is in the end, the very end, Grams CHOOSE to wait for her daughter.  Whether God gave her the will or that it was just the plan is unknown.  The beauty of it cannot be taken lightly.  I understand Grams circumstances are quite different than Brittany's.  I totally understand that.  Some journeys end after long and horrible and heartbreaking battles, leaving those left behind broken.  But broken is not always bad.  Broken is sometimes the only way we can be made whole again.  Going thru these earthly traumas is a part of our lives.  No one will be able to escape trauma.  Seriously, if God can't escape it, why do we expect to.  And as for a choice of when we get to escape because our journey will be hard and ugly on us and others- that's not a choice for us to make.  The choice is how to travel.

I choose to travel with lots of baggage (meaning friends, family, help).  Not everyone knows everything but you know just about everything.  And I will share absolutely anything.  And while there are many hard choices I am going to have to make along the way, the date of my death will not be one of them.  There is a spiritual tenderness and love in helping and watching someone you love more than anything leave this rotten earth and step thru those gates of Pearls.

My Gram was really special.  Her husband died, then a year or so later her son was diagnosed with Multiple Sclerosis.  She cared for my Uncle until the day her died, in her house, often by herself.  She taught us how to love even when my Uncle was in a vegetative state.  We learned to include, to talk about Cubs baseball, since that is all that mattered, and we learned to be sad, and mad and to ask questions.  My Uncle Darwin died at the end of his journey, from pneumonia often caused by MS.  It was horrible.  My Grams had to bury her son, my mom her brother, my cousins their father.  There's a pain there I cannot understand.  Hero's they all are.

Choices are hard to make, and we can make bad or wrong choices.  Some matter, some don't.  The right choice can affect any number of people in different ways.  I come from a long line of family who are able to make good choices during the hard of life.  That same line also make the most ridiculously stupid choices also.  Humans…. We all are.

It's sad that Brittany and her family and friends were not given a chance to walk the hard journey of her life.  It's sad that they can't respond to her strength of choices of treatment or of living life in spite of knowing she's dying.  There are a lot of blessings in those moments, for both the living and the dying.  I have proof.  The proof will be in the comments below I hope. (on blog page please)

I live differently now.  I forget more, but I care more.  I love more, and I protect much more.  I'm not afraid of speaking my mind much anymore; not afraid to argue.  I didn't necessarily have a ton of strong opinions 10 years ago.  I'm not afraid to take on teenagers!  It's not my favorite, but I'm not afraid. And I am definitely not afraid to stand up for what it morally, ethically and biblically right to do.  And it seems Gram may have taught me some of that.

If the choice is right, is within God's will, and will do no harm, it's probably a good one.  Take a chance and make a choice.  Make a decision.  But always choose life.  It was given to us as a gift, from a father who sacrificed his own son for us.  For Him we can endure anything.  Because of Him we can endure anything. In Him we can endure anything.  Not always smiling, not always understanding, and often not without anger.  He understands all of that because he felt so much more than we can ever imagine.

I have long periods of needing to process new, bad, or complicated information.  I know I need to be able to sort thru and understand my options, my truth.  My medical team understands that and is careful to give me the truth.  I can't get thru my head if I don't have truth.  In talking with my oncologist today I mentioned how it's necessary for 'us' to go to the dark places because they are a strong possibility or reality.  I said we just have to in order to process so that we can deal so that we can fight.  A right mind, and right spirit, and right attitude is half the battle.  IT IS.  Now matter what the battle.  Hard is hard, no matter what your hard is, the process is similar.  It is getting progressively more difficult for me to process at a fast pace.  But until it's processed, this girl makes no decisions.  And this drives my peeps nuts although they understand.  I'm sure I'd feel the same if the roles were reversed.  I expect that this trend will continue-me needing more time to process.  Given that time however gives my heart and soul time to reconnect with God and to believe in winning.  It's that simple.  I just wish Brittany would have known that and the strength and determination and beauty that can come from a spirit filled with divine fight.

To Grams, for her strength and steadfast faith.  For praying for us.  For knowing how to love us, and showing what real love is by sacrificing her life for the lives of her husband and son.  She wouldn't have seen it as a sacrifice but as her parental duty, her natural instinct to protect and nurse her son to health.  Who of us wouldn't do that?  My mommy does it every month for me.  So when you wonder how I can do this, now you know.  It's in my genes.  I got some of the best ones available!

Polly on the rise.

Saturday, October 18, 2014

About TIME

The song begs you to believe that time is on your side.  Gotta love songs.  Their lyrics and melodies bringing truth and life to your heart and soul.  Some lyrics giving you permission to act a certain way, to do certain things, to love the one you're with.  I can remember events just by hearing a song; takes me right back to the moment and the feelings.  Oh the 80's….

I hear people say so often that they can't wait until they get to heaven; how they can't wait until they leave this earth and are with Jesus.  I don't know if I am just not a strong Christian or what is wrong with me, but I am not in a hurry to leave this earth.  I really enjoy living here, in my house, with our trees and deer, with my babies and the love of my life.  I don't want to be away from my family and friends, my neighbors or my long distance friends.  I like Earth.  It's so big and I've done so little.

Time, it's not on our side.  Time keeps on slipping into the future.  Time slips away constantly.  That is it's purpose.  It's a countdown to something special, something important, something life changing.  It's the tune on the piano as you walk down the isle, step by step until you reach the alter and your beloved.  It's the minutes counting down the contractions until the baby is born.  It's putting aside a CT scan so you can go across the ocean to a country you've never been to so you can concentrate on the mission you are on there.  And sometimes time has to be stolen for an awesome family vacation to Disney, because for over 6 years of time, vacations have been close to impossible.  Cancer stole my time.

My perspective on time has changed so very much since I became a person living with cancer.  I don't like to call myself a survivor, altho I have survived 5 times!  I'm more of a fighter.  God didn't make me an Aries for no reason at all.  My Ovarian Cancer will never be cured, unless God performs a miracle, so I have to learn to live with it.  It's been a long learning process.  I really dug in March 2011 when I went to Chile with my 2 oldest children.  Once I understood that they could come with me I literally decided with in 5 minutes that we were going.  I knew God wanted us there.  Tim has no desire to travel so he was going to help pay for it by working over time.  God had it covered tho.  We raised all the money we needed plus I got to help the team by donating money from my business.  It was so awesome!  I took some control over when my next testing would be.  I was due for a CT scan before I left to see if my cancer was still in remission.  I am one of those people that likes to know ALL of the facts, but I also knew myself well enough to know that if I had that test done I would be no help at all in Chile because I would be a blubber of worry.  So, I chose to do no testing until I got home.  I told TIME that it wasn't in charge of me for 10 days.  Ha, I told time how much time it had….


Aug. 7, 1993

Sometimes you just have to be a clown.
And sometimes the red won't wash out of your hair for weeks.

In spring of 2013 Abbi graduated.  My cancer had returned yet again and chemo was on the springtime schedule-or so they thought.  There was no way I was going to be ill for her graduation day or her party, so I told TIME I wasn't having chemo until after all of that.  Her party was on a Saturday and chemo was on Tuesday.

Then there's this year- what a year.  Two visits to the Mayo Clinic and another recurrence.  But this time the news was much worse.  Tumors, ascites, no clinical trials for me, but chemo just around the corner.  That was the beginning of August.  Everyone deals with bad news in different ways.  I need time to digest, learn and understand as much as possible.  The pressure to start chemo right away was pretty heavy.  I wanted to wait until the kids were in school.  I let TIME rule, and pressure, and scheduled for the 3rd week in August.  But God….turns out that He does know me.  I ended up with an extra week due to a test I had to have before beginning my new chemo treatments.  GOD told TIME it had to wait.

So now, life is back to the chemo schedule.  Thankfully this chemo is not as rough on me.

Time…It's not on your side.  Take time to make time, make time to be there…..  What is your there?  Is there something  you want to do but feel as if there is a certain amount of time that needs to pass before you can?  Waiting until the right time to move?  To go to college?  To get engaged or married?  To travel?  To have a baby?  Why wait?  (Well wait to have the baby until you are married, please-and wait to have sex until you are married, please:)

I don't have time to waste.  For me it's a fact of health.  For others it's just a fact of life.  None of us know when our time is up.  So live well.  If you know, that you know, that you know God is in charge of the 'thing' then do what He says.  There's no time requirement on anything.  God doesn't say we have to wait a distinct amount of time to get engaged or married, or to have babies.  There's no time requirement.  If God says yes, then do it.  Just do it.  You'll feel empowered and obedient all at the same time.

I have a different take on time… time is precious and I'm choosing to use it for precious people doing things, going places, visiting, forgiving, asking for forgiveness, accepting, helping, walking with others, who are precious to me.  Cancer may have taken some time from me, changed how I can live my life physically, but it can't take my will or my faith or my Jesus from me.  Oh it's tried-and won once or twice.  Thank you Lord for forgiving me.  Thank you for the TIME I have here on Earth.  And thank you for the time I will someday have with you.

Revelation after writing this:  Nothing can take time away.  Our day is our day.  My day is my day.  I simply have to learn how to live out my time differently than I thought I would get to.  So careful listening to Him and responding and doing what He says.  First thing… vacation!  Time well spent.  A whole new blog just waiting to be written.

click to watch a video.  I'm the bald one, doing what I had to do….

Wednesday, August 27, 2014

F5, we're gonna die!!

As the debris flew across I 275 on our way to the first Cross Country Race Barby and I were, well, just a wee bit concerned.  I was looking at this awesome cloud formation, the kind where each cloud is going in a different direction and they were just layered on up into the sky until they met the boss cloud.  If that wind had moved in just the right way…. Hence my 'F5, we're gonna die' comment.  We laughed, until we got off the interchange and I looked at Barby and asked if it was windy.  I knew what the answer was because the trees were, shall we say, doing some yoga.  She said yes, as a box blew to the car and we crushed it, debris from who knows where just kept flying by.  We waited for a cow, but we were in the city so…..  By the time we do get to the park the meet is basically cancelled.  Awesome.  So we drove home, in much calmer weather.  I should add we weren't  acting hysterical in the scared sense but we were laughing a lot.  Well, until she almost hit the downed branches/trees.  Dead trees half way across the road.  'Teri! Tree!!!'  Swerve, miss.  LOL because I called Barby Teri.  It was kinda a fun death defying experience all in all.

So I got to thinking, which is a good thing since I've been so very numb since coming home from the Mayo Clinic a few weeks ago, that truly that drive could have ended tragically.  We saw many accidents that did.  It just helped me to see that there are a lot of different tragedies in life, I don't own them.  I've got one.  Many people have so much more.

I know you all want to know about the Mayo visit at the beginning of the month.  It was highly tragic and it was an F5 tornado that ripped though our entire beings.  Shelly and Teri came with me this time. I had my blood work done and my CT done in the morning then saw Dr. Worwora in the afternoon.  A lot had changed since May.  One area by my stomach was double in size, I had a lot of growth and new areas throughout the peritoneum and I also had ascites, which is fluid around your organs caused by the cancer.  All of this combined puts me into the category of Stage 4.  I didn't qualify for any trials.  And I truly lost all hope.  I know what ascites means. I've read so very much on this.  I felt like I was 9 months pregnant because of the fluid build up, so very uncomfortable.  I hadn't been able to eat more than a couple bites at a time.  Energy level non existent. Could go to church because I just couldn't.  I can't really put words to that one.  We record what the doctor says, but I haven't been able to listen to it again-yet.  Then to learn that I probably need to move on to the second line chemos.  I mean each sentence was blow to the heart.  Thankfully he could see that I was misbelieving some things.  He flat out said he disagrees that this is the END as I called it, and that the 3 meds I get to choose from have great results.

Side note: I understand the meds can have great results. I also understand that you're on them forever, whatever that is for you.  I have much doubt in my physical ability to make my forever long.  I was rejecting God into any scenario which could clearly be seen by the rolling of my eyes!

The next morning the Dr called me!  He called because I asked him the question I ask many doctors, just in case they aren't seeing me as a real live person who still has a family to raise.  I asked him if I was his wife, and this was her situation, which of the 3 meds would you want her on?  Shelly doesn't think he's ever been asked that.  It took a moment and he said the Doxil because like me she would want to be able to do things with the kids and live a somewhat normal life.  I said ok then that is what I will do.  So he called because he spent the evening making sure there was not a new trial that I could fit into and he was making an appointment for me to have my ascites drained.  There is a trial, but unless I move to Minnesota or they allow my care team here to perform it I can't really do it.  I really don't want to be in Minnesota in the winter!  But I don't have the final answer on that yet.

I went to see my nurse the next week, gave her copies of all the info and we talked, a lot.  She confirmed the end is far from this moment.  She agreed with the Doxil and Avastin combo, which is a usual next step.  The problem with the Doxil is that it can take up to 4 treatments before scans and numbers change.  But that's ok.  I'm sure it'll be working and I'll be feeling a bit less full of cancer than I  do right now.

So I scheduled for Aug. 22.  Only 2 weeks after finding out all of this information.   Not nearly enough time to do, learn, clean, prepare the way I know I need to before chemo starts.  I hadn't even gotten out of the pit yet.  I was so sad and shocked and pissed and broken hearted I couldn't process, or move off my chair.  Yes you could def say depressed.  And yes, I get that it's ok.  Don't you worry about whether or not I believe something is ok!!  When they called to cancel it because I needed an Echo on my heart to be sure it's working well before I take this med (comforting) I was so relieved!  It was the first time it felt like God was back into knowing me.  I've come super far this week.  I mean I'm not having a party, but I don't roll my eyes when I hear his name.  I may not be able to sing but I'm listening.  I may scoot out early but its just because….. I don't know what to say any more than you do!  And what I have to say really should be said elsewhere, if you know what I mean.

So now I go in on the 29th, if my echo is fine. It took me a few days to settle on a day but I did it.  I think that if I start Friday I'll be able to still drive to school the first day, be able to go to curriculum nights for the boys and at least know a little bit about their schooling for this year.

So I will be very honest and tell you the last few weeks have been harder than any other part of this journey, even finding out I have cancer.  All that bad news rolled into one hour was too much for me and the girls because we were not expecting so much to be so bad.  So if I seemed off, I was, and I will be.  I may catch a glimpse of you, but that may be all I can handle.  I'll have to be careful of germs again which means no hugging.  Really?  That's just torture.  I can't commit, which is now my way of life when it used to be the opposite.

So, one more day of feeling like half crap then an unknown number of days to feel unknown!  Awesome.  See, hard to get a grip when you have no idea what is coming.

Me and God, we're tussling.  I have my faith but I'm not gonna lie that it falters very often lately.  I do a lot of eye rolling, but my head knows the truth.  And the only reason I am so scared is family and friends.  I suppose the different endings with me as well, but truly there is only one ending.  And who knows, it could be an F5, not cancer….. I'm not really as smart as I think I am…..

Thank you all for caring so much.  Please keep praying.  Also, share this blog if you'd like to.  Maybe we can help someone.  Ovarian Cancer is so overlooked, under researched, so unknown.  Help spread the word.


Thursday, July 24, 2014

For Me?

My sister  came home to Port Huron for the PH to Mackinaw sailboat race.  It's the biggest thing that happens in PH.  Especially when the Sharpe girls are in town.  But we didn't even get to go out that actual boat night.  We did get to see fireworks tho, and downtown carnival Port Huronites.

On Friday morning we went downtown to see some boats and we ended up walking the sidewalk sale. Well downtown PH doesn't really have shops anymore so vendors were set up along the middle of the street.  I'm not normally a vendor gal, but we walked a bit and I stopped at a jewelry vendor (duh).  I was looking at the charms and mentioned that the Autism heart was pretty and that I had a severely autistic nephew, but I noticed they didn't have any teal ribbon charms.  But they did and the vendor got one for me to see.  Nice bracelets, nice jewelry that can tell your story with in numerous charms.  I let her know I wasn't much of a jewelry gal and she understood and was so sweet.  I filled out the form for a chance to win a free bracelet which was beautiful, but as I was filling it out I was saying that I wouldn't have a party….

So, coincidently Abbie, the vendor, has a child with Aspergers, on the genetic line of Autism.  He has had cancer but is cured now.  Her family is riddled with both breast and ovarian cancer.  In fact when I asked about the teal ribbon, for ovarian cancer, I said that it was my cancer, and she said she had it 8 years ago.  I looked at her long hair and healthy looking body and asked if she had been cancer free since than and she had been.  She was 32 when diagnosed.  32!  They did catch it early which is the biggest blessing that can happen with cancer.  However, she is positive for the BRCA gene, which brings her risk of breast cancer WAY up.  Up so high so can have a double mastectomy based soley on the gene presence.  She is having it done.

She home schools her 5 children and her husband is in the service.  They just decided to live summers in PH and the winters at their home in Arizona.  Pretty cool.  So we talked a bit, my husband called and I ended up walking away so I could hear and talk to him.  After we hung up my mom walked up next to me and gave me a teal box.  Inside the teal box was a pretty teal trinket holder and inside was a bracelet, with a teal rim and a heart shaped autism charm and a teal ribbon.  Teary yet?  Me too.

So of course I went back, to a vendor, who I will not have a party for because I don't wear jewelry….. I just hugged her and thanked her for blessing me.  She said she cried the whole time she put it together.  So we talked a bit more. Oh how her story breaks my heart.  She has a daughter, 19.  I have a daughter who is 19.  She was just diagnosed with ovarian cancer.  SHE'S 19!  She was away with her boyfriend/fiancee at that moment figuring out what to do about children.  Lord, have mercy.  Abbie had to really push to make sure her daughter got the correct testing.  Luckily again it is caught early.  But the heartbreak.  Her story is incomprehendable.

Coincidence: never have believed in it.  Abbie is a Christian woman with a Christian family and found a church to go to in PH while they summer there.  And it's my sister in laws church!  God had a plan for that day, and it happened just as he planned.  I hope I did what he wanted.  I'm blessed that she did. God let me meet a survivor of a disease with few survivors.  A carrier of the gene mutation I will be tested for again, and a 19 year old daughter already diagnosed.  You know where mine is heading when she gets home from Germany….

Coincidence is just a word people who can't fathom a God that loves and gives grace and hope to those suffering use when they are given moment of peace and joy and understanding.  God brings the incidents to us, when needed, when necessary.  Not all incidents are good- that's that.  But they aren't accidental in any way.

My journey keeps giving.  It may keep giving me cancer, but it keeps giving me stories to tell, awesomely, unbelievably loving and faith filled people to touch my heart.  Sometimes I get to be that person.  It seems recently that more and more I have been the receiver.  I want to be that hope  but I've been so unsure of so very much lately- not just health- just normal life stuff.

I'm so blessed to have met Abbie, to pray for her daughter.  I look forward to contacting her, about having a party! Origamiowl jewelry.  God's so funny.  Good thing I love to have a party!

Pray for Abbie's daughter, Lauren I think.  And look for those coincidences and be sure to go to them.  Don't run from them.  They are for you and for the other person.

Coincidence, a meeting of people under certain conditions that people believe are random, but Believers know are orchestrated by the God of all Masterpieces.

I'm so glad to be so confused so often.  Maybe that helps me to keep seeing the truth that coincidence is non existent.

Much love,

Monday, May 12, 2014

By your side

Why are you striving these days?
Why are you trying to earn grace?
Why are you crying?
Let me lift up your face, just don't turn away 
Why are you looking for love?
Why are you still searching as if I'm not enough?
To where will you go child?
Tell me where will you run, to where will you run? 
'Cause I'll be by your side wherever you fall
In the dead of night whenever you call
And please don't fight these hands that are holding you
My hands are holding you 
Look at these hands at my side
They swallowed the grave on that night
When I drank the world's sin
So I could carry you in and give you life
I wanna give you life 
And I'll be by your side wherever you fall
In the dead of night whenever you call
And please don't fight these hands that are holding you
My hands are holding you 
Here at my side wherever you fall
In the dead of night whenever you call
And please don't fight these hands that are holding you
My hands are holding you 
'Cause I, I love you, I want you to know
That I, yeah I love you, I'll never let you go
No, no 
And I'll be by your side wherever you fall
In the dead of night whenever you call
And please don't fight these hands that are holding you
My hands are holding you 
Here at my side wherever you fall
In the dead of night whenever you call
And please don't fight these hands that are holding you
My hands are holding you
Here at my side
My hands are holding you- 
Tenth Avenue North 
I'm sure I've heard this song more than a few times, but hearing it at a funeral of a friend I never got to meet sent me into a great place in my heart.  I can't imagine what is going to go thru your head as I write, but I've never admired and smiled about someone I've never met before.  Deb and I were FB chatters.  She is good friends with two of my friends, one her nurse, and one a friend from church.  I went to the funeral for my friend but also so that I could know her more.  And I learned so very much about her.  We would have been friends.

This song reminds me of how I became Polly Pocket- do you remember?  Pretend to be small like a polly pocket, settle into the palm of God's hand and stay put- don't jump out.  That's the short story.

Don't fight these hands that are holding you.  If I could make my own video a part of it would show me pushing His hands away, turning myself away and walking into a forest.  Why a forest?  Because if you don't have a compass, don't know where you are and get in there far enough you'll be lost.  I can assure you, it doesn't take long to get lost, and to plead for His compass.  

Look at these hands at my side
They swallowed the grave on that night
When I drank the world's sin
So I could carry you in and give you life
I wanna give you life

God's hands are by His side, He was buried and placed in a tomb, while on the cross He was given vinegar to drink which represents our sin, all so He could rise from the dead and give us eternal life, carrying us to Him, to our home in Heaven.  The video I watched showed Thomas touching His side.  Oh the doubt.  Doubt is such a slippery slope, an overly wooded forest of fear of the unknown.  

To learn about Deb, to listen to the words written about her, to listen to the songs she chose for her funeral, to hear about how she dealt with finding out she only had a month or so to live… To learn all that taught me about courage.  Courage not found anywhere except in a heart of a Jesus lover.

So I'm heading back onto the path of courage.  Real, true courage.  Along that path I am making a pit stop: at the Mayo Clinic in Minnesota.  We leave tomorrow.  I'm going to have tests and find out if I qualify for the study.  And even if I don't I'll have a very good second opinion.  Fear is rearing it's ugly head in rising numbers and chemo on the back burner.  Plus it's May, so it's just the same story different year.  I should be used to it, but that fear always creeps up on me.  So although I know hardly anything about what will be happening in Minnesota, I know I will have a CT scan and a lot of testing, and get to talk to a couple of doctors.  So that is exciting.  More information is better for me!  Having some choices is always nice too.

I'll have to thank Deb for her courage, for showing it and sharing it.


Friday, April 4, 2014


Proverbs 27: 19  As water reflects the face, so one's life reflects the heart. 
I have a tendency to take friendship very seriously.  I know why I do.  It's because I have screwed up so many good friendships.  I screw up even now.  I wish to be perfect, but it just isn't going to happen. My childhood friendships were great and exactly what they should have been.  I don't think I started screwing up until high school.  You may or may not know that I rather disliked my husband in High School.  It's soooo true.  But I didn't mess that one up (just like now, it's never me::))
Proverbs 27:6  Wounds from a friend can be trusted, but an enemy multiplies kisses.
To be honest I started to be selfish in HS.  I thought I wanted to be 'popular' but now I know differently.  I've learned that even as a teen, I liked a lot of different people-according to HS classifications!  I had some hilarious relationships with some popular people, some awesome friendships with some banders (of which I got to be a part of for one year), and the jokes between the burnouts and me were so funny.  I wasn't stupid, I made sure I had my back covered by strong fighters just in case someone wanted to fight me.  That didn't happen.  It did to my sister, but that's for another day…..

I have figured out why I can't stand the word 'clique'.  I hate it because it basically puts people in a box and if you're in a box, you can't grow and mature.  I was the girl who made sure that when the mentally disabled boy in our neighborhood wanted to play with us he was welcomed.  I was the girl who went on a date with a guy whose speech no one could understand.  He was wheelchair bound and I believe he had MS. I could understand most of what he said because my dear uncle Darwin had MS and we all learned to understand and 'speak' that language.  I had a heart for him because I could see all the looks on others faces when he'd try to ask a question in class.  I helped translate.  I've just have never been afraid to approach someone just because they are different.  I'm not afraid to say that I didn't quite understand what they just said could they repeat it…. I'm not really afraid to say a whole lot.

So I guess I hate the word 'clique' because I never got to be a part of one.  That's what I mean by selfish.  One friend, who lived so close to me, we just drifted apart.  No issue, we just went different ways. Other friends were the lets get the party going friends.  I really needed them because I was stuck in a really unhappy relationship and at that time in my life wasn't strong enough to stick up for myself.  When I saw a blue VW Rabbit a few weeks ago I laughed out loud.  That was my car-a car used for sneaking into drive in movies, cruising around downtown and throwing cinnamon gummy bears at Harley Dudes, and racing around in general.  I'm glad cars can't talk.

So on to college and a couple of really great roommates.  I had too many friends that I talked to.  Too many that I shared my heart.  And at least once I hurt a friend deeply.  The one I'll focus on is the one that still haunts me.  While there is a reason for what I did, it is irrelevant.  I told someone else something I wasn't supposed to tell, and it ruined her reputation, our friendship, and my friendship with our mutual roommate.  I've still to this day never felt so badly about causing so much pain to someone I loved.
Proverbs 17:9  Whoever would foster love covers over an offense, but whoever    repeats the matter separates close friends.
Which brings me to being an adult.  I have been blessed with friends. I have many friends from many different areas of life, many different kinds of people because I love different kinds of people.  I'm not sure what normal is, but I can assure you I haven't a normal friend in the bunch!  I've learned, thru some very hurtful circumstances to be very particular about who I let IN.  And while I understand that I share a lot of who I am on these pages, these pages do not have a personality.  They aren't me.  But you do know quite a bit about me.  I have 3 friends I trust with my heart.  I truly believe that no one should have too many people who know their hearts desires.  People are just not trustworthy.  I have these 3 friends because of God.  I know that God brought them into my life, to be, or do for me when I can't.  I know God brought Bethany and I together because we didn't like each other at first!! In fact, our mutual friend made us go out one night together to 'The Flats' in Cleveland.  It's impossible to not have fun in The Flats.  We dressed 'to the 9's' for that night and we learned that we really had a lot in common and a TON not in common.  It's been 25 years, and 22 of them have been long distance.  We are able to not talk for weeks and know that nothing has changed between us.  It's awesome.  God brought Shelly into my life when I was teaching Kindergarten.  I know that was from God because she totally intimidated me because she was such an awesome teacher.  I wanted to be like her.  It took us a bit to get close, but when we were pregnant together with Austin and Micayla, there was no breaking us apart.  We fought over the bathroom almost daily, I watched her drink her Vernors every day and be sick everyday.  We ran after 'runaways' often (please take a moment and picture that-we weren't small pregnant women!)  It's been 20 years.  And Teri- totally a God thing, via Facebook!  I messaged her that I thought we should meet because she knew a few of my friends, one from church and others from Romeo.  So I just had to meet her.  I stalked her comments to learn more about her.  She actually said yes to meeting and here we are today.  She has only known me post cancer.  Talk about a roller coaster ride.  I've been downright crazy, depressed, hyper, hopeful, hopeless….That's how she knows me.  It's been 5 years now.
Proverbs 27:17  As iron sharpens iron, so one person sharpens another.
God has quite a bit to say about friendship.  I wanted to share it because I know friendship can be hard and hurtful.  I think the most important part of friendship is honesty, even when it hurts.  If we can't say what we mean then why are we talking?  Being honest brings growth to both parties.  It teaches us more about each other's hearts and why they work the way they do.  In fact in just the last 2 weeks I've done a lot of learning and begun to understand quite a bit.  Mostly, God chooses friends really well for me.  That I am fiercely loyal and protective of those relationships and will not give up on them because I know that God brought us together.  I will never stop learning how to be a good friend. (BTW, the same rule applies to my marriage.)
1 John 4:11  Dear friends, since God so loved us, we also ought to love one another.  No one has ever seen God but if we love one another, God lives in us and his love is made complete in us…  Anyone who loves God must also love their brother and sister.
Proverbs 27:9  Perfumes and incense bring you to the heart, and the pleasantness of a friend springs from their heartfelt advice. 
Having an issue with a friend?  Have you said or done something, been dishonest, been gossiping?  Then fix it.  Don't explain it away.  Don't blame them.  Don't give up.  Go, in love, and talk.  If you're in a box, get OUT and broaden your base of friends.  Get out of your box and love differently, love the way they need love.  Jesus did.  He even called Judas his friend at the moment of deception.
2 Peter 3:14  So then, dear friends, since you are looking forward to this, make every effort to be found spotless, blameless and at peace with him.
Job 2:11-13  When Job's three friends, Eliphaz the Temanite, Bildad the Shuhite and Zophar the Naamathite, heard about all the troubles that had come upon him, they set out from their homes and met together by agreement to go and sympathize with him and comfort him.  When they saw him from a distance, they could hardly recognize him; they began to weep aloud, and they tore their robes and sprinkled dust not heir heads.  Then they sat on the ground with him for seven days and seven nights.  No one said a word to him, because they saw how great his suffering was.  
Thank you for loving me, even when you don't know me well.  Thank you for loving me the way I need, because sometimes I don't even know what I need for love.


Wednesday, March 12, 2014

For Sheri

Today I said goodbye to a friend I have known for less than 2 years. I didn't get the courage to say this at her funeral today, so I'll say it here, on a piece of 'paper' where I can delete my mistakes, my stammerings and the look of horror on my face when I am in front of people.

I am not a good friend of Sheri's, but our daughters are good friends.  We know each other because of them.  We knew our families were both Christian.  We knew each other because we both had cancer.

When I learned about her diagnosis about a year ago I was devastated.  Not for me, please understand.  For her family, for her daughter Haylee that I just adore.  Because cancer has been a way of life for the last 6 years of my life I have a tendency to get in contact with people I know who are newly diagnosed.  It's just part of what I do.  Sheri and I texted.  I learned the name of her rare lung cancer, knew its stage, and knew it wasn't good.  About a month later we saw each other at the Newsboys concert.  I gave her a hug and we chatted a bit.  She said something extraordinary that day.  It never left my brain (amazing as that sounds, it's true)  She said she is believing her body is healed already and that whatever she has to do for treatment is just insurance.  She believed she was healed.  She was right.

I learned so much about her this week.  I think her favorite color was pink.  She liked M&Ms and Hersheys.  She loved vacations.  She adored her family.  She has the best adoption story ever.  She was scared.  She loved.  She was loved.  Her husband is incredibly strong in his faith, as are her children.

The funeral was a celebration.  It was upbeat.  Everyone knows where she is and how whole she is.  Everyone knew of her faith.  Distraught was not the emotion of the day.  While sadness and heaviness were present, no one seemed to have lost their heart to complete brokenness.

But that is not what I was going to say.  I was going to say that Sheri is an Esther. She was ready for such a time as this.  She wasn't afraid of facing what may kill her because she knew that her God would be there for her, no matter what His will was.  I was going to say that she knew and accepted that healing may come in life after death.  Remember how long it took for me to get thru that?  I'm not entirely sure I am completely thru it but at least I understand it better.  It's a wonder why that ending is regarded as the worst, when the reality is that it is the best; for all of us. Why do I spend time scared of Heaven?  Ridiculous.  Of course it isn't really being scared of Heaven, it's being scared of leaving family and friends.  It's being scared of their grief and missing the future you've always dreamed of having with them.

During the funeral I had thoughts about what I didn't know about Sheri and how we weren't really friends, but shared life when we needed or wanted to.  I wasn't feeling guilt about that and I think that was because I did what she wanted.  She had a great friend and church and family base and wasn't in need of more support like that.  But we understood that we both had a small part in each others lives, if only to love each others daughters, and occasionally complain to and encourage each other.  I kid you not, during the talk the pastor said there were some gifts people could give to Sheri now, and one of them was to let go of 'shoulda, woulda, coulda' and just be.  I don't know how freeing that was for some people but I know it had to be freeing for some.  Regrets are haunting.  Regrets about someone who has died must be absolutely horrifying.  I can hear myself saying to people 'I wish I coulda….' and I've heard so many others say the same.  If you have one of those moments, then do it!  Just freaking do it.  I think that will be one of my new goals; to move, do, go when those feelings come to me.  I understand that there are times in life when we can't do- especially in mine and we need to give ourselves a break at those times. When we have no excuses, when our heart says do, pay attention to that prompting of the Holy Spirit.  Maybe the regrets are because we didn't listen to our God.

Today I learned that Sheri and I had a lot in common, an awesome family, friend and church base that are supportive and loving in so many ways, and an intense love of pink and chocolate.  I think we coulda, woulda, shoulda been better friends, but I have no guilt because she was so loved.

And so am I.  Thank you so very much loving well.

Tuesday, February 25, 2014

On almost 6 years

I've been spending the last 2 days updating my blog with my old entries from my LHH.  I've been wanting to have the 'whole' story all in one spot, mostly so I don't loose it!
Looking back at some of the entries I actually remember writing them.  I remember the feelings of being scared, of waiting, of all of the firsts.  I remember being scared to write and share!  I shared so many boring numbers with you-but I was sharing and that was HUGE for me.  Hard to believe now, but sharing wasn't and still isn't a strong suit of mine. Quite a bit has changed hasn't it.
Remembering my hair falling out and the whole wig debacle! Such a very bad day that was.  I remember being so self conscious about being bald.  Now I just walk around bald and don't feel weird about it.  I remember the looks I got from people, the lack of eye contact.  Now it just doesn't bother me and see it as their issue, not mine.  However I will talk about it when asked.
It's been almost 6 years friends!  So much has changed.  My fear level still lurks around my brain but it doesn't have complete access.  And the fear I have intermittently is not based as much on not knowing. It's more about being worried about the future, or about getting breast cancer, or about the month of May, or about traveling while the kids are here, or about making memories.
I've heard myself wish for, complain about and wonder why I don't get the miracle of healing.  It's very evident that since I am alive today, I have gotten a miracle.  Not many of us make it past 5 years.  So Dear Lord, thank you.
I've learned a lot about food and eating better, exercise although it isn't something I like, vitamin C and hyperbaric treatment.  Right now I'm still exhausted so very easily when energy is exerted because… well for pete's sake it's only been 2 months since my last chemo, and those 5 rounds were very difficult on my body.  Gotta love the cumulative effect. I've learned to just be, to enjoy, to live as normally as possible.  I did get a bit of good news last week tho, my CA125 only rose 4 points and that is just such a relief.  If you remember what the plan is, when my number raises to a certain point (yet unknown, but we'll pretend it's 170) I'll have to have a dose of chemo, just one, then wait again for the number to rise…repeat, repeat, repeat hopefully for many years!  As crazy as all this sounds, it's a relief.  Why is this more doable in my mind?  I truly have no idea.  I have no idea when I'll have to be 'dosed', I'm just waiting…. And I'm ok with that.  Growth?  Gosh I hope so.
I'm feeling like I can make plans for the future.  That's freedom right there.
I'm feeling like the bone pain will go away when I can move!  Hurry spring.
I'm feeling like I can help again.
And I have some serious spring cleaning issues right now.
I'm feeling like I can hope again, believe more fully, and build my relationship with Jesus back up.

Thank you for praying for me.  I'm feeling again, which is better!

Tuesday, January 7, 2014

Go away 2013

After a year of being on some sort of medicine or chemo for this chronic disease of mine I am very ready to face a new year with better understanding of it, of me, and of living within the boundaries of love and acceptance, faith and hope and belief.  It's been a trying, difficult, painful, numbing year, yet somehow amazing slipped in and out throughout it all.
The highlights?  Well having Barbara here with us, Abbi graduating and her party, Austin getting his varsity letter, Jayson's birthday party that was 4 months late, and being able to chat on FB with my Chilean daughter, Nellely.  My family and friends who did what they could to help me through my storm, our storm.
I have watched more TV than I care to tell, let my kids be on any electronic device more than I ever thought I would allow, done less cleaning- just done less than ever.  I call it resting and recuperating.  I don't really know how to negotiate what that looks like, what the line is between less stress, exercise, keeping life real, being overly tired and overly out of shape along with overly steroided, causing some weight gain.  That just makes me super mad!
Tim and I got to spend an hour with Dr. Hicks last week.  We got so much information, perfect timing I must say.  There is a lot to tell you.  First of all I get to take a break from chemo.  My CA125 is 41- where it's been hovering for the last few months.  That will be my new normal and that's ok.  I kinda had that figured out.  For the next several months my Dr. will be tracking my CA125 monthly so that he can figure out what my plan of action, my maintenance schedule will be.  It's going to take some time, and some roller coaster rides, but in the end, a PLAN!!  To know me is to know I like to at least have a little bit of knowledge about what is next for me.  Playing these last few months as 'wait and see' was hard- I know it was hard for you too.  Basically the plan will reveal itself in the numbers.  When my CA gets high then I'll have a treatment and it will go back to it's new normal.  Yes probably only one treatment, probably 4-6-8 months apart; it is another 'wait and see' until my pattern is established.  For today, I am so happy and relieved about it.  One treatment every few months- piece of cake.  I get to recover then live life.  More good news is that I am still on the first line of defense chemo, I have no symptoms, and people can live like this for 20+ years.
Not only will we have a plan, but we have his blessing to go and see what other places are offering.  This is almost too hard to explain, but some institutions my have found a protocol that has proven to work and is approved for those specific doctors in that institution to use as a standard of care- but the information about those approaches do not have to be shared or approved by FDA or NCI….. So some investigations will also take place.  He's totally open to it! As long as treatments aren't' harmful he's all for them.  I love my doctor.
2013 tested me and my head and my heart to the core.  It shook me, it taunted with my beliefs, it played games with my head and heart daily.  I have been unable to read much, because my head can't concentrate, but that includes reading God's word or books about him.  I am hoping that I can truly do some resting in his hands while I leave my health in the hands of my doctor (and me), trusting that God is in the middle.  I have great hope that once my body and mind recover from the chemo poisoning that I will be able to once again concentrate- on anything else but me.  I'm so over me.  I want to concentrate on others again.
So the new year begins and I need a resolution- I don't really.  I never really got into that simply because they never seems to happen.  A suggestion was to choose a word that you would like to become better at displaying, or living as….

I've had these tiles for years, in my 'Christian Kitchen'.  They've been there so long I forgot what they said.  I was thinking about what my word could be, having little to no luck and then I remembered these.  I re-read them and decided that Victory, with it's definition is definitely how I need to be walking each day.  Then I read trust; do I even need to re explain how little trust in the Lord I have had?  Cast…. Again, many of you know that 'casting' isn't a strong suit of mine.  I've gotten much better but who on earth doesn't need to do that better.  Then Jesus: he's the same yesterday and today yes and forever.  In my recent life, in this battle, He hasn't seemed the same.  He's seemed distant many times, stingy with the healings being prayed for, dare I say seemingly uncaring. (This is about me and my messed up 'ness')  My head knows so much more than this heart can understand, which is good.  I know none of those are true about Jesus.  I know he is kind and loving and that the prayers are being answered.  I selfishly want, for my myself and others, the miracle of healing here on earth.  Like 4 years ago.  So I will work on seeing Him as the same, always.  I will take some time and identify His characteristics so I can speak them when I see them.
So here's how I'll word it- completely backward…. Jesus who is always for me, always loves me, wants me to cast all anxiety's on Him because He cares.  I will trust Him with all my being so that I can walk each day in the victory that belongs to Him, and because I belong to Him, it belongs to me.
For now, that is my update, my life change, my commitment for growth.

Thank you all for your love and prayers. Here's to 2014.

Much love,