The End of a Tough Year

"Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man." -  Benjamin Franklin

15 important things I've learned this year:

1.) Focus on the positive.  We spend too much of our day focused on the negative.

2.) You can only appreciate the highest of highs if you experience the lowest of lows.

3.) We get through life moment by moment.  Be sure to live in each one.  You never know which moment will forever change your life.

4.) Life is WAY too short.

5.) Your family is the highest priority. 

6.) This too shall pass.  (I can't tell you how many times a day I say that to myself.)

7.) Have people in your life that love you for everything that you are.  People that are there on the bad days AND on the good ones. It's easy to love and be there for someone that is hurting, but what about loving and being there for the person that is happy and content...?

8.) Commit to a cause - Please help support One Shinning Light : )

9.) Be sure to say, "I love you," and "I'm sorry," as many times as they are needed.

10.) You are what you eat.

11.) There is always a silver lining.

12.) Your mind and body are stronger than you think they are.  Give them a little credit.

13.) Focus on the outcome. 

14.) It's okay to cry and it is okay to be weak.

15.) LAUGH

Unspoken

"If I can do it over, I would trade, give away all the words that I saved in my heart that I left unspoken."

I have something tugging at my heart and I thought I would share it so that someone else could possibly benefit from it as well.

You see, we were given a mouth for many things.  We can use it as a weapon or as a gift.  Many other times we don't use it at all and remain silent.  I have the tendency to run at the mouth, but that doesn't mean that I always say how I'm truly feeling or use my mouth as a gift.  Later, I'm filled with regret. 

Losing someone you love without telling them how much you loved them isn't always the worst scenario.  What about all of those that you care for that are living?  Someone in my life took a brief moment last night to wrap their arms around me and tell me how much I meant to them and how much they loved me.  It put missing pieces of my heart back.  It was 5 minutes of their life, but probably one of the greatest gifts that I will get this year.

I don't have material things to give this Christmas, but I have a mouth and a voice.  Maybe there is someone that you feel needs to hear how important they are to you.  Maybe you think it's to late for them to hear it.  Maybe they won't respond.  Maybe it will heal their heart.  Maybe it will heal yours.  Maybe it will build a bridge.  Maybe they are only here today and this is your only chance.  Maybe it can help you both say goodbye without regret because you gave it your best shot.  Maybe it's been 20 years that you've needed to say it.  Maybe you tell them all the time, but you want them to hear it again.  Whatever the reason, this Christmas, give the unspoken words of your heart.   

CHEMO...WHATEVAH!

"During chemo, you're more tired than you've ever been.  It's like a cloud passing over the sun, and suddenly you're out.  You don't know how you'll answer the door when your groceries are delivered.  But you also find that you're stronger than you've ever been.  You're clear.  Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception.  Previously, it has taken you weeks, months, or years to discover the meaning of an experience.  Now it's instantaneous. "

I have to remind myself numerous times a day that, "chemo" is a word, not a paragraph.  Many days, as the well known quote says, it at least feels like a sentence.  Luckily, I have a very easy sense of humor.  That doesn't always help, but some days it does.  I'm reading a great book about a woman that went through chemo and decided to write about all her funny experiences.  She also talks about how chemo can get her out of almost anything.  I wish I could say that I use chemo as an excuse from time to time, but I haven't found a time that I wasn't telling the truth.  Chemo is kicking my butt.  Plain and simple.  I don't know a better way to put it.  I'm still pondering the idea of how they put poison into your body to kill something that is killing you.  Someone, please make me understand that?!  Is there a doctor out there?  I could really use a 10-4!

I have jokingly, but not so jokingly, been telling people how I have mastered the art of starring at ceilings.  It has become my past time on the bad days.  For anyone that has gone through any type of chemo, I know you will appreciate my details of this one day that I'm about to describe.

I don't spend a whole lot of time alone.  Let's just face it, that isn't safe.  However, one day this week I did.   I thought I would be brave and get in the bath about 10:30 that morning.  The bath sounded great, but I was nuts for even thinking I could do it alone!  I haven't taken a bath alone in 8 weeks.  It is amazing how little energy I have and how much just getting undressed and into the bath tub takes.  I should add, baths just don't seem right these days either.  I have a tube sticking out of my back that can not get wet, so I can't lay down and the water can only go so high.  I can't lay sideways because my port is on my chest and can't get that wet.  I have no hair, so there is nothing to shampoo, condition or shave.  I don't think I realized how therapeutic washing my hair was until I didn't have any to wash.  It is basically some soap and my spongy thing.  Yep, chemo brain can't remember what you call it.  Anyhow, once I was in the bath, I didn't have the energy to get out and I proceeded to sit there for 45 minutes because I couldn't do it.  Once I was able to get out, I could only get over to the bed and lay there.  Then, I spent over an hour trying to get enough motivation and strength to go back into the bathroom and put my clothes on.  I spent that time starring at the bedroom ceiling.  I'm sure I could tell you every curve, corner and crack.  FINALLY, I get my clothes on and manage to walk back into the living room and plop on the couch.  That is where I spent hours starring at the living room ceiling because I didn't have the energy or desire to reach for the remote about 2 feet away.  By the time I stopped starring at the ceiling, it was after 2:00.  I had just spent an entire day trying to bathe and dress, without knowing that the time had passed like that.  People, that is just scary!

They told me I could have nausea, "chemo runs", as I call them, sores in my mouth and G.I. tract, horribly dry skin, fatigue, bleeding at any nook and cranny...and worse.  On most days, I have at least three of those issues at a time. 

The point to this post, you ask?  They told me when I started chemo that I would only have time to be a chemo patient right now.  They were right, it has consumed my life.  However, I REFUSE to let it win.  You may make me bald as an eagle, puke uncontrollably, not be able to stand even a drink in my mouth...but you can not have my heart and my mind.  Those belong to me.

Let the NEXT journey begin...

"To get through the hardest journey we need only take one step at a time, but we must keep on stepping."

Tears, sadness, hope lost, anger, fear...they all came flooding back 8 weeks ago.  I'm still picking at bones with God, but I know he understands.  I also know that at the very end when I stand before him, I AM going to be able to say, "I gave it all I had!"  Life can try to beat me down and beat me down, but it doesn't know what all my 120 pounds brings with it. 

About 6 months ago, for those of you that don't know, I started having some issues with a lump on my right hip.  I had a lot of fun with the kids at Gatti Town and really thought that I had a hernia come up.  My surgeon didn't think so though.  He seemed to think my stomach muscles were weak from the surgeries and my intestines were bulging some.  I was happy with that and went along my merry way.  Who wants more surgery or something else wrong with them, right?  Later, in May, I started having some issues with my intestines being blocked.  I ended up in the ER, where they did a CT Scan, but they didn't find anything then either.  So, about 8 weeks later, I start developing another painful lump near my belly button.  My first thought was, "Yep, these are hernia's.  Guess I should get back in."  So, in August, I went back to see my surgeon.  At that time, he was able to better diagnose what was wrong.  I have Desmoid Tumors.  They are very rare tumors.  Only about 900 tumors in the United States a year, but I have four.  Only 15% of people with Gardner's Syndrome will get them and they are caused by the trauma of surgery.  I have one on a leg of my aorta, which is beginning to block my small intestine, one in the fatty part of my stomach, one on my back muscle and one that is blocking my uterer, so it isn't allowing my right kidney to drain into my bladder. 

There is no time to sit here and worry about how they missed them or why.  They just grew very fast and started to invade my abdomen and need to be treated immediately.  I have decided that one of the hardest things in the world is having a rare tumor.  It is also one of the scariest.  Doctors and people are already so uneducated on FAP and Gardner's Syndrome, J-Pouches, it just added one more thing to that list of unknowns.

My surgeon was uncomfortable treating them because he never has, so I found my way to M.D. Anderson Sarcoma Center in Houston.  After many more tests and doctors, they decided that the tumors are inoperable and chemotherapy is my only option.  I was given a 40% chance, which I've learned is a big percentage in the tumor world.

I started chemo last week.  I'm on DTIC and Doxorubicin, "red devil" or "red death", as they call it, and believe me, it is!  They were able to put a neuphrectomy tube in my kidney while I was in the hospital.  That is helping me keep my right kidney healthy for now.  We are hoping to try a stent again next week.  Pray for me, I want to get rid of this bag!  I think you all know how I feel about bags.  It would just be one less thing if they could do that.  It would also mean that the chemo is shrinking the tumors. 

Chemo was horrible.  I think I allowed myself too much credit because it was not as easy as I made it in my head.  I had my last round from Thursday to Monday of last week (72 hours).  I'm starting to feel a little better today.  The nausea has eased and the fatigue isn't near as bad, but the sores in my mouth and GI tract are keeping me down.  My spirits started to be better this morning, so I'm hoping for a much better weekend.  I guess you start to feel better before they hit you with it again.  I will start my next round of chemo in the next 10 days.  We are just waiting for my white blood cell count to be back where we need it. 

Thank you to everyone that has helped my family in some way.  No matter if it was emotional or physical support, I am grateful and in debt for life to you.  The journey has only just started, so I know that I'm going to need you all over the next many months and I feel so incredibly lucky and blessed to be surrounded by the people that I am.  You are all one in a million in my book!  I love you!         

Silence is Golden

"Silence is sometimes the answer."

It's 8 o'clock in the morning and for the first time in a while it is only me in the house.  It will be a while before that happens again with summer starting tomorrow.

I was just sitting here catching up online when, out of the blue, I was emotional and I knew exactly why.  Isn't it amazing how in the silence we are forced to listen?  This blog post isn't about the answers that came to me this morning, but about the listening.  I treasure these moments that I get every now and again.  I think the saying should be, "Clarity is golden."

86,400

Imagine there is a bank account that credits your account each morning with $86,400. It carries over no balance from day to day.


Every evening the bank deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course?

Each of us has such a bank. It's name is TIME.

Every morning, it credits you with 86,400 seconds.

Every night it writes off as lost, whatever of this you have failed to invest to a good purpose.

It carries over no balance. It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day.

If you fail to use the day's deposits, the loss is yours. There is no drawing against "tomorrow."

You must live in the present on today's deposits. Invest it so as to get from it the utmost in health, happiness and success!

The clock is running!! Make the most of today.

To realize the value of ONE YEAR, ask a student who failed a grade.
To realize the value of ONE MONTH, ask a mother who has given birth to a premature baby.
To realize the value of ONE WEEK, ask the editor of a weekly newspaper.
To realize the value of ONE HOUR, ask the lovers who are waiting to meet.
To realize the value of ONE MINUTE, ask a person who just missed a train.
To realize the value of ONE SECOND, ask someone who just avoided an accident.
To realize the value of ONE MILLISECOND, ask the person who won a silver medal at the Olympics.

Treasure every moment that you have! And treasure it more because you shared it with someone special, special enough to spend your time with. And remember time waits for no one.

Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present.

One Year

"The more you praise and celebrate your life, the more there is in life to celebrate."

Here I am!  I landed on one year of recovery!  I, absolutely, can not believe I made it through 365 days.  The first thing Bill said to me this morning was, "I know it's an important day today, don't be sad."  SAD!  No way, not in a million years!  I've mourned the loss of my colon for 364 days.  So, on this 365th day, I'm celebrating this milestone!  I'm celebrating my life.

I'm still on this journey and we are about to start Ashton's, but we are going to stop so that we can acknowledge and celebrate every small victory.  To me, ever step that you take with F.A.P. is a HUGE victory!

I'll close with this - today, April 21, 2010, I'm letting my pink light shine!!

The Spring Season of our Lives

"So glad to see you smiling, so good to hear your laugh.  I think that you've found you even missed yourself."

March of last year is when we set my surgery date.  Everything sort of became a fog after that for me.  I feel like I missed Spring, Summer and Fall for sure.  Winter starts to become a little clearer. 

It's been a challenging and changing year for my family.  Not only because of the health issues, but my marriage and my family have endured and survived circumstances that some don't.  I think it's called grace.  I don't like that we've had to go through it and that we are still pushing on through it, but it has been such a learning time.  I wish that someone on the outside could step in for a minute, not to walk a mile in my shoes (or lack of, I don't care for shoes that much), but to feel the wounds healing.  To feel the hope that I have for our lives.

I've talked so much about pain, suffering, loss and sadness.  Now, I feel like I can begin to talk about hope, healing, miracles, grace and love.  What I didn't know until I arrived at this certain place, is that without one you can not have the other.  Life happens and life can be down right brutal, but God is good and He is good ALL THE TIME! 

I use to think that you couldn't really be honest with God about ALL of your feelings.  You couldn't tell Him that you were angry or disappointed or upset...with Him.  Although, He knows our hearts anyway.  You don't have to speak it for it to be so.  One day, my Father said to me, "Jessica, I didn't want this for you.  I don't want you to suffer or be in pain.  I don't want you to feel unloved or not cared for.  I'm crying with you, I'm feeling your pain as if it were my own.  I feel your fear, but do not fear because I am with you.  You couldn't feel me beside you because I was holding you in my arms."  He carried me through the pounding rain and the heavy winds and he continues to carry me through each break in the storm. 

I am a hopeless, hopeless romantic...bless Bill's heart!  I'm a tough cookie to deal with in that department.  The good thing for me is that God is too.  He can see the romance and beauty in everything and in every circumstance.  He not only believes in us, but he knows that our Spring season is just around the corner.  The flowers are blooming, the sun is shinning and skies are blue.  The rain that falls will help the flowers grow and the grass turn green.  My prayer today is that God's rain will be refreshing when it hits your skin and helps you grow from the ground towards the sunny, blue sky.  However, when our season changes, He will be there helping you weather the changes until your Spring comes around again.     

Oh February, I love you...

"Love never fails."

February is my most favorite month!  Not just because I have a birthday during the month (That's definitely not it, as I move closer to 40.), a wedding anniversary (#9 this year) and Valentine's Day, I love it because I am filled with the cuteness of love for the whole month leading up to it and the month after.  To me it is like Spring coming after the Winter.  It's refreshing and fun.

This year we are trying some new things.  With everyone struggling financially, we have decided to pick our chins up and get creative.  Not only do we need it as a couple, our kids need it too.
That leads me to Valentine's Day.  This year, instead of buying an expensive gift, try these creative ideas to show that special someone how much you love them.  You'll be surprised at how much they enjoy the fun gestures.  I know I plan to try a few...or all of them.  Happy almost February!

#1 Go somewhere there is sand (or snow).
Write 'I Love You' in big letters in the sand.
Then, while crouching next to it, have someone take your picture. You can have the picture blown up and framed for your loved one.

#2 Get some rose petals. Spell out 'I Love You' in rose petals on your bed. Women love this one.

#3 Leave a message on your loved one's voicemail with a poem, and don't forget to say I love you at the end.

#4 Have a T-shirt made by Cafe Press or Zazzle that says, "So and so loves So and So!" Insert your own names, of course!

#5 Place little love notes, cartoons, and racy sayings around the house where your loved one can find them.

#6 Make a little coupon book for your loved one that has things they like such as massages, having a bath run for them, manicures or pedicures, anything that you know they would enjoy! Then when your sweetie really needs one of those things you can either do it for them, or pay for someone to do it.

#7 Buy a large clear jar with a lid at the dollar store. Fill it up with slips of paper, each one detailing another reason why you love your loved one. Then give it to your sweetheart on Valentine's Day.

#8 Write out I love you in Cheerios on your kitchen table the morning of Valentine's Day.

#9 Take a moonlit walk, just you and your loved one. Hold hands and walk slowly. This is one of the coolest ways to say I love you.

#10 Draw a heart somewhere your loved one will see it. Fogged up mirrors and windows seem to be favorites! However, if you have a board that you write chores or lists on, this can work just as well.

Find more information on Familial Adenomatous Polyposis here. http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis

Good news brings joy to my soul!

"You would look so much cooler if you added a blue streak to your hair Mom." - Ashton

I don't know, I may rock his world and show up at school one day with a flashy blue streak in my hair and see how "cool"  I really am. ha!

Ashton's results came back with no cancer.  Another 6 months without surgery.  Most people would say, "WOW!  6 months, that's nothing."  However, that is music to my ears.  As I said before, I need some time to think and he needed a break. 

I have also decided to get a third opinion.  I can do that by just forwarding his medical records.  He doesn't have to go, so that helps.  I don't think it ever hurts to be overly educated on anything, especially this disease.


Find more information on Familial Adenomatous Polyposis here. http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis