Unfolded Wings

“It is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings."

Whether it was my environment, situation, another person that didn't agree with who I was or my own thoughts about myself, I've never been able to allow myself to fly.  I've felt the tremendous need of flight tugging at my broken wings since I was a teenager. However, have always felt that I was a caged bird looking at the world through captivity.  Low self-esteem, insecurity, anxiety, choices, fear, hurt, doubt and bitterness have held me in my cage for 22 years.  I've never accepted or loved myself for who I am, and because of that, I thought I didn't possess the qualities needed to soar.

For the most part, I have NOT agreed with the statement that our mistakes make us who we are and brought us to where we've landed.  I've always been too filled with guilt and bitterness about my own mistakes, and mistakes of others,  to understand that in life we should always do our best, but we are human and to be human is to sometimes figure things out the hard way.  When someone would talk to me about, or speak on,  forgiving yourself, I immediately closed my ears and mind to it.  If I forgive myself that means I have to say that everything I did is alright...and to me, it isn't.  No, I didn't make the best choices at times and I have a mountain of mistakes behind me, but the biggest one is holding on to and counting them.  Due to that mountain of mistakes weighing my wings down, I've made decisions that were intended to, in some way, correct the wrong that I did. Only then, I seemed to make things worse.  It wasn't until this weekend that I was hit with this  enormous life epiphany that has completely rocked my world and made me look at life in a new and brighter light.

This weekend my ex-husband was in town to see the kids and take Emma to the Princess-Papa Ball.  It's a tradition that we started when she was little and I was very happy to know that she wouldn't miss it this year with him living out of state.  Nothing went right from the time that he walked into the airport in South Carolina.  With several flight changes due to weather and delayed planes, he finally made it to Dallas.  He was unable to get a rental car and I ended up having to spend the day with him and Emma trying to get everything done for the Ball.  It was a long day that ended up having many unexpected rewards.  My sweet princess made it to the Ball and I gained a mountain of closure.

When things hurt, like most people,  I try to avoid them.  My ex-husband is one of those areas in my life.  Being painfully honest, I was not looking forward to being in his company for that many hours.  Anxiety filled, I put my best mama smile and semi-big girl panties on so that Emma wouldn't be uncomfortable with the two of us.  It is sad that the presence of one person can cause such an unease and ache in your stomach.  Through the course of the day, it began to get easier.  It really had little to do with what he or I were doing or saying.  It had more to do with the fact that God was relentlessly speaking to my heart. The conversation went something like this:

God:  Jessica, why do you hate this man that you once said you loved and cherished, shared 13 years of your life and brought beautiful children into the world with?  

Me:  Really?  You really asked me that? *shaking my head*

God:  Let me restate my question.  Why do you hate him TODAY?  You can't control who he is or what he does.  You can't make him whole or be who you want him to be.  That's for him to decide.  Why do you hate him when, along the journey that you two shared together, you learned who you are and who you strive to be? 

Me:  I don't know who I am.  I don't like who I am.  I'm an over emotional, sensitive, anxious, impatient, empathetic hot mess that gets my feelings hurt at every turn and worries non-stop about what other people think or do.  I'm annoying at best.

God:  But you DON'T  know who you are, huh?

Me:  Maybe I've figured it out, but I don't like it.  

God:  You, my uniquely made daughter, were given those traits as gifts.  They were meant to help you love people when they were unlovable, build people up when they are down, speak to them when no one else notices them.  They were made to help you endure and forgive. They were given to you so that at some point when you stopped being able to see how beautifully made that you are, that you would forgive and love yourself.  You are exactly who I want you to be.  You are exactly where I want you to be. I've placed you in this spot in life, and you're happy!  You grew into this person that you are and while you were maturing and growing, I placed people in your life to help you learn what was right, what was wrong, what hurts, what makes you happy...you've learned what love is and what love isn't.  Let me ask you again, why do you hate him? 

Me:  I don't hate him.  He hurt me, broke me, made me less than.  In the process, I made bad choices.  I can't go back and fix it, I can't make it better...and I certainly can not forgive him or myself.  

God:  That marriage made you wise.  It prepared you for what was waiting for you.  All this time you thought your wings were broken, but they only needed to be unfolded. I gave you two wings, a left and a right.  When one was in pain, the other was your healing.  When one had sorrow, the other comforted.  When one felt no one cared, the other loved. Birds and butterflies can't fly without two wings.  Just like you can't fly with folded wings. I made you an eagle.  Only you have locked yourself in a cage, but you are meant to fly free above it all.

Later that night, I was quickly overwhelmed with emotion over what had happened that day.  Then, the  left wing began to unfold...and then the right.  I felt the weight of bitterness towards myself and my ex-husband be lifted.  Suddenly, I knew that tomorrow had great things in store for me because I'm not in danger of falling off the cliff.  I can open my wings and soar. For the first time in 37 years, I actually BELIEVE that everything has a purpose, a reason and a season.  I understand why there were tears, heartache and pain.  It happened so that when I came to this place, this happy place with my husband and children, I wouldn't miss it by being unforgiving and bitter towards myself or anyone else.  Instead, I can love and enjoy it with peace of mind and unfolded wings.

Mighty Warrior - Delicate Flower

"I don't think of all the misery but of the beauty that still remains."

Two weeks from today, it will be a year since I completed my last rounds of chemotherapy.  I can't even believe that.  It's amazing how it all seems just like yesterday, but at the same time, feels like it was another life.

I was told by everyone that has been through chemo that afterwards I wouldn't be the same mentally or physically.  You can't help but to be changed.  How it changes you is what is important.

A year ago I had lost my entire large intestine (colon, appendix, rectum, anus).  I had four large tumors and I still had two kidneys. My right kidney was not functioning on its own due to one of the tumors.  I had a line draining out of it into a bag so that it would stop swelling and would help with my tremendous pain.  Another tumor had liquefied and was causing all kinds of issues and pain.  I had a line draining it into a bag from the front.  I had a port-a-cath in my chest with lines hooked up to it so that I could get chemo, fluids and blood. I weighed right under a 100 pounds and I didn't have a single hair on my body.  The hair on my head, eyebrows, eyelashes, nose hairs, ear hairs...gone.  My toenails were falling off one by one due to the chemotherapy.  I couldn't taste food because of the effect on my taste buds.  I could barely eat anyway due to all the ulcers and the mess that it had made of my digestive system.  I was on constant antibiotics, nausea medication, pain pills, pain patches, anxiety medication, medication for depression, migraines and ulcers.  I didn't have a bit of energy or strength. 

I, unfortunately, did not have the support or unconditional love of an important person that was close to me at that time.  I felt the need to share that at this point because I need to speak about bravery.  Every single person with cancer is brave.  You are fighting for your life.  You fight for one more minute with those that you love.  I can't tell you how many times I prayed...begged and pleaded with God that he help me get through one more minute because I couldn't leave my precious babies yet.  Bravery is knowing that you are going to suffer for an undetermined amount of time, yet, you still show up every single day and go through it for a CHANCE at a longer life.  It is important to me that every person going through the agony of cancer and cancer treatment is thought of as a mighty warrior, yet treated as a delicate flower.

Today, I have one less kidney and four much smaller tumors.  The only medications that I need are something to continue to treat the ulcers and over the counter pain reliever. I have with great amazement watched my hair come back.  Daily, I can see more.  It's so liberating to see the growth.  I feel like with every single hair I gain something back - healing, dignity, courage, patience, happiness, forgiveness, caution, laughter, joy and time.  Today, I am in love, loved, enjoying the people in my life and cherishing every moment.

Cancer has taught me that life is too short to be afraid and too long to be angry and hurt.  It isn't life if you aren't living.  We weren't made to sit on the sidelines.  We are precious and we have a purpose.  I've learned that love is not something you are given, it is something that you give.  It's more than feelings, it's actions.  You can't say it too much, but you can show it too little.

Several people joke with me about some things that I've done since chemo.  Maybe it isn't the things that I've done, but my lack of fear...unless you're a bug.  My experience will never be far from my mind and I would be lying if I said that I'm not concerned every day that I'll have to live it again, but everything, all of the suffering that I have endured, brought me here.  I'm changed in every way.    

Lists

"Goals in writting are dreams with deadlines."

If you ask anyone that knows me well, they will tell you that in this life I have not yet learned how to fly by the seat of my pants.  I like schedules and plans and lists and organization.  I even had a conversation with someone recently and we were talking about how the lines in the floor, after vacuuming, are therapeutic and make us happy.

Lists are gratifying.  You fill them with things that you need done or want to do and then you check them off one by one.  Some of my lists still have empty check boxes, but when you finish a list, it is a major feeling of victory and accomplishment. Maybe that is why I do it.  Life can kind of wrap itself around your ankles and drag you around, but if you put your goals down on a piece of paper, it seems to loosen the rope.  It gives you a little control over what is next. Control - check.

I just started a new list.  It is titled, "Unknowns."  That list is already reaching 20 and I haven't been able to check anything off yet.  However, a very wise person that is aware of my need for lists and order told me that if I made a list of unknowns then that would be planning.  Magical words for those of us O.C.D.'ers.  My "Unknowns" list starts like this:

1.) Learn to fly by the seat of my pants. A MUST in a world of unknowns!  We never know what tomorrow may bring.

The best teachers in the world...kids.

"The trouble with learning to parent on the job is that your child is the teacher."


1. Try new things, even if you're scared.


2. If your sister hits you, don't hit her back.


3. Don't flush the toilet when your Mom is in the shower.


4. Never ask for anything that costs more than $10.


5. If you can laugh, you can get through anything.


6. Chocolate cake fixes almost everything.


7. When you want something expensive, ask your grandparents.


8. When you hear the word, "Uh-oh" it's already too late.


9. The best learning doesn't come from books.


10. Crayons and Scentsy do not remain solid on hot summer days.


11. Everyone needs a time out, sometimes.


12. Celebrate every first and every last.  No matter how big or small.


13.  Birthday's are special, no matter how old you are.


14. Honesty is always the best policy.


15. Every kiss is different.


16. Love unconditionally.  Even when it hurts.


17. A band-aid can heal skin and hearts.


18. Mom is ALWAYS right.


19. Don't touch the curling iron...period.


20. Don't grow up too fast.

Band-aids Needed

"Sometimes it lasts in love, but sometimes it hurts instead."


I write about every other break or healed piece of my heart, but not this piece.  Maybe, it was out of fear or hope...or a little of both.  


I know you'll read this, eventually.  I don't have much left to say, except this...This is me letting you go, the only way I know how.  I pray every day that I'm not bitter and that you will find what you want and need in the world. 

Butterfly on my Shoulder

“Happiness is a butterfly, which when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you.”


I have to start by saying, it is so nice to talk to people about their problems, again.  For almost a year now, most people felt like I had enough on my plate and wouldn't share their plate with me.  All the while, I was begging people to share with me because it makes your own plate of chocolate (mine ALWAYS has chocolate on it) look like carrots and peas.  Many times, helping other people out with their struggles, helps us figure out our own.  In the last several months, as I have learned of things that those dear to me and maybe not so near to me, have been going through, I have come to recognize the same constant in all the conversations.  Happiness.  That word should be a paragraph.  It says so many things.  We seek happiness, we long for it, pursue it, hope for it, pray for it, wish for it, need it, love it, fear it, don't know what to do with it, run from it. All the while, it is chasing after us.  


Happiness comes in waves or moments.  Maybe it is the butterflies that you get after a first kiss, maybe it is basking in the sun, the first time your son smiles at you, the way your daughter's hair smells. Maybe, it is from success at your job or in a sport.  We all have our own definition of the word.  No one can be happy all the time and no one can survive this world without a little bit of it at many different times.  No one can give it to you.  You can feel it with a person, but they don't define it for you.  Other times, happiness is letting go and letting be.  You can't buy it or bottle it, but you can decide to let it in.  Through all the crap that life serves, we can decide our own fate...happiness in the quiet moments, in the dark moments, in the joyful moments, in the busy moments.  It comes and it goes, but we can only make ourselves happy.  You can't reflect it onto someone else if you aren't glowing with it.


So, for a moment, come sit with me in this field of grass. Watch the beauty of the butterflies soaring around.  Leave your plate at home and just breath.  Quietly, a butterfly will land on your shoulder and sit a while.

Lack of Crisis

"Any idiot can face a crisis - it's day to day living that wears you out." 


It wouldn't be fair if I only took the time to blog when I felt like what I had to say could be inspiring or refreshing. I looked up the definition of inspiring and it says, "To create a positive feeling in someone."  Everyone always tells me how inspiring I am...or how inspiring my writing is, but I don't always feel that I deserve that pretty title.  However, ANYONE that has been through, is going through, survived, conquered, barely made it out alive, from a disease, deserves to wear the title of "Inspiring." I agree.

When going through crisis - disease related, marriage related, addiction related, family related, LIFE related, we are all survivors.  Every day that we wake up becomes another notch on our survival stick.  Life is hard and messy and beautiful and long and short.  It's life, no one gets out alive.  Although, everyone is different.  Some of us, when going through trauma or crisis, put on a mask so that we can just simply survive.  We emotionally detach from our bodies.  Sometimes more is asked of us and sometimes we are allowed to let our guard down.  We have to be allowed to let our guard down.  Not only by those around us, but we have to give ourselves permission to feel.  Without it, we become numb.  Numbness is a dark, unhealthy place that we don't want to go.  It's a place that Inspiring, Fighter and Survivor go when no one else is looking.  When everyone goes back to living their lives and the immediate threat of danger isn't as near to us, we can go there.  We've just been hit by HUGE waves that nearly sank our boat, so you would think that thanking God for life alone would be the simplest of things, but it isn't.  We've dug a hole, jumped in, placed ourselves in fetal position and have decided to linger a while.

Today's blog is dedicated to those of you that have ever felt numb.  No one knows how long we may stay in that dry desert, but at some point, we will start looking for water.  That is our body's way of saying, "HELP!"  It is time to feel again.  Take the mask off, reattach your spirit to your body...eat, drink, sleep, cry, be mad, be happy, be sad...just feel.  It's alright.

Now, we have to start working after months, maybe years, of being in the desert.  We have to be a mother, a wife, a sister, a daughter, a friend, a co-worker.  We aren't just surviving cancer, we are surviving life.  All you need is a shovel, but you have to be the one to dig yourself out.  That doesn't mean alone.  It just means that you have to be the one to ask for help.  Most of the people around you probably don't even realize that your spirit has been on a trip.  Your body was here, but your spirit has been hundred of miles from home, lingering, waiting for the drought to be over.  I've been there, I'm there, but I've put the shovel in the dirt because I understand that living is brave.

Caretaking 101

"Hope is the feeling we have that the feeling we have is not permanent."


I figured that it was time to get on here and change my Easter theme.  I can't believe I've been silent this long.  I have always been a thinker, but since April, my thinker thoughts have been almost absent.  I was starting to wonder if they would ever surface again.  Amazingly, as I was  sitting on my couch this morning with a heating pad on my legs, 800mg of Advil in me, because I'm coming off all the pain medication after 10 months and my body HURTS, drinking my orange juice because I wake up with low blood sugar every morning now and my head feels like it might rattle right off, with my heart beating out of my chest...I finally had a writing thought.


My quality of life has changed.  At best, on a good day, I am 75/25.  I'm living without two very important organs.  That in itself is amazing to me, but also changes things and some days are tough.  Then, you add tumors, chemo or both into the mix, well, you have hard days.


I do have a point and it isn't, "Feel sorry for me, please, I beg of you."  It is this; we all have needs.  Some of us have more needs than others at different times in our lives.  Sometimes things happen and our needs become great.  I've been there.  I don't have to relive, revisit or rehash those days for you, you catch my drift.


First, I want to thank my own caretakers.  Your care for me is always seen, always heard and never will be forgotten.  I am blessed to have many of you.  I would also like to send the warmest of all thank you's to women and men that take care of a sick or needy child, parent, friend, spouse or sibling.  To the nurses and doctors that have made my day a little brighter with a smile, a touch, a laugh or a joke.  My heart is overflowing with fond feelings for all of you.  


I use to think it took something special within a person to be a great caretaker, but I am finding that you need only certain qualities and qualities can be learned.  


So, here is what I felt so compelled to write about this morning.  Number one; compassion.  My shoe isn't on your foot and your shoe isn't on mine, but with an ounce of compassion comes great understanding.  Along with understanding comes caring.  Whether it comes easy for you or you have to find it within yourself, you can do it.  


Number two; moments change.  I don't live my life by days or hours or minutes anymore.  I think any person that is sick in a longer than temporary fashion would tell you that their life comes in moments.  Moments change and moments are important.  They can be good and they can be bad.  They can feel well and they can be down right horrible.  So, in the bad moments, you have to decide, does this person need to hear it is going to be alright...things will get better, it isn't forever?  Do they need a big fat pity party?  Those are very important and must be allowed.  Usually they include heavy tears, snot, loud sobbing, uncontrollable irritation and sometimes bad words.  Join in that pity party, please, it is important.  Tell us what we want/need to hear...this is terrible, it isn't fair, why, why, why?  Sometimes our pity party moment turns into many moments and we need someone to rush in and save us from it.  Maybe we need a hug, kind word, realistic word...in my case it involves a new coat of nail polish on my toe nails...preferably in a salon where they use hot rocks.  Go ahead, laugh, it's alright by me.  In the good moments, rejoice with us.  On our bad days, we long and search for the good one's.  


Number three; for those of you that are in situations where you care for someone full or part time, be sure to make some of this about you.  You know why?  Because it is affecting and changing your life too.  Illness is hard on anyone and everyone that it touches.  Take a moment and pat your own back, take time for you.  Not everyone becomes bitter, but I have seen it and it is ugly.  I know people have to take care of people out of obligation to their situation sometimes, but these same things apply to you.  Don't let it make you bitter.  Talk to someone, talk to the person you are caring for if you need to.  We know we aren't an island all to ourselves, most of the time.  Don't suffer alone, because you aren't alone.  However, you are very important, loved and appreciated.


I could go on all day, but for me, those three things are on the top of my list.  It only takes an ounce of compassion...   

Words

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that frightens us most. We ask ourselves, 'Who am I to be brilliant, gorgeous, talented, and famous?' Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that people won't feel insecure around you. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in all of us. And when we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”


Most of the time, when I sit down to write I already have something on my mind that I want to say.  Today, I was pulled to sit down and write, but I don't really know what words are about to follow.


I've had five rounds of chemotherapy since September.  I'm getting ready for round six next week.  I prayed that round one was the magic number, then round two, then round three, then round four, then round five, now round six.  I've finally come to terms with the fact that my magic number will come when it is time.  In these 117 days that I've been waiting for my magic number to come, I've come to truly understand the meaning of certain words and the roll that they play together.


Tumor:  An abnormal growth of tissue resulting from uncontrolled, progressive multiplication of cells that serves no purpose.


Oncologist:  The branch of medicine that deals with tumors, including study of their development, diagnosis, treatment and prevention.


Patient:  One who receives medical attention, care or treatment.


Fear:  To be uneasy or apprehensive about something.


Cry:  To sob or shed tears because of grief, sorrow or pain; weep.


Chemotherapy:  The treatment of disease using chemical agents or drugs that are toxic to the causative agent of the disease.


Family:  A group of individuals derived from a common stock.


Friend:  A person whom one knows, likes and trusts.


God:  A being conceived as the perfect, omnipotent, omniscient originator and ruler of the universe, the principal object of faith and worship.


Faith:  Confident belief in the truth, value or trustworthiness of a person, idea or thing.


Strength:  The power to resist attack.


Fight:  To strive vigorously or resolutely. 


Pain:  An unpleasant sensation occurring in varying degrees of severity as a consequence of injury, disease, or emotional disorder.


Life:  The physical, mental and spiritual experiences that constitute existence.


Journey:  The act of traveling from one place to another.


They may only be words, but they describe my journey.  Some days it is sunny and 72 degrees.  Some days it is below freezing.  Some days there are high winds and it stirs the dust around.  Some days there are storms with thunder, hail and lightening.  I've been told that after a huge storm, there is a rainbow, so I keep walking along this dirt road where sometimes I have to hide in the ditch to stay safe from the storm, sometimes I have to start a fire to stay warm, sometimes I get to smell the flowers because the sun is out and shinning on my face.  I'll keep walking down this road through all the weather until I find my rainbow.  Instead of anxiously looking for a pot of gold, I will be looking for my life where everyone that I love is waiting to embrace me because I fought vigorously and won.

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

A crowded room.

“When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.”

I know you have all heard the expression, "Feeling alone in a crowded room."  That is how I feel when it comes to this disease.  Especially, when it comes to Ashton.  Making choices for me isn't easy, but at least I am making them for myself and I don't really allow myself to think about if it is right or wrong, I just concentrate on what I feel is best.  It isn't so cut and dry when it comes to making huge life decisions for your child.

You know, if it was a cut knee, I could put a bandaid on it.  As mothers, we just want to fix things.  When facing a problem, our first thought is, "How do I fix it?"  With FAP, you don't have a ton of options and you can't really ever "fix it."  Most days that is just not acceptable to me.  It's hard and I struggle and my heart aches.

Ashton had his second colonoscopy/endoscopy this week.  In January, he had 20 polyps in his colon, total.  They removed all of them.  It has been 11 months and he now has many.  They stop counting at 50, so he has 50 plus.  They removed 8 of the larger ones to biopsy and we should get those results back in a week or so.  We pray that there is no cancer at this time.  His doctor felt good about those that she removed though.  However, we had to have that talk that I've been dreading.  At this point, it's timing.  The clock is ticking and we are now gambling.  For some reason, for me, this has been just like finding out the first time...all over again.  "Lord, I'm not ready."  He's telling me to get ready though and I don't like it.

We've decided to wait for the biopsy results and if there is no change, we will wait 6 months for his next colonoscopy.  That gives him a break from it and it gives me time to think.  The goal is to get Ashton through high school before surgery is needed, but if he starts having any symptoms or a polyp changes, we will do what we have to do.

On our way home from Ashton's procedures Monday, Ashton asked me if he could give this disease to his kids.  It was such a smart question for his age and I was so glad that he was thinking that far ahead, yet I found myself really sad when I had to answer him.  I gave him the facts - his children have a 50/50 percent chance of having the disease.  However, I gave him the positive side of it.  There are so many new medical discoveries every day, there are ways of changing genetics and testing for those things and there are other ways of having a child.  Imagine being 14 years old and already having to wonder if you will have to make those decisions one day.  Through my insecurities in all of this, my goal is to make him BRAVE!

Information about Familial Adenomatous Polyposis at:
http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis

Not yet defeated...

“It is inevitable that some defeat will enter even the most victorious life. The human spirit is never finished when it is defeated...it is finished when it surrenders.”

This post will be mainly for those of you with F.A.P. and for parents of children with F.A.P.  Also, I should add, this is only my opinion. 

Please, please make sure you get a second opinion and that you talk to your gastroenterologist and a surgeon.  I suggest talking to several doctors before speaking to your surgeon and making a surgical decision.  You truly want to have ALL the information beforehand. 

A few things that you might want to ask, that I did not, are:

1.) Can I get polyps in my J-Pouch, K-Pouch (or whatever you might have) after my large intestine is removed and my pouch is created? 

2.) If you have stomach polyps, what TYPE of polyps do you have and what are your chances that those polyps will turn into cancer?  F.Y.I. - the second leading cause of death in anyone with F.A.P. is stomach cancer.

3.) Is F.A.P. in every cell of my body?  The correct answer should be yes.  This means that your skin and bones can also form tumors.  Any of you with Gardner's Syndrome understands that is true already, but just ask the question anyway.  You need to have your liver and thyroid checked on a regular basis and, if you are a woman, your reproductive organs.

These are questions that I did not ask and now I wish I did.  Would it have affected my decision making process?  Maybe, I can't look back now.  Something that I want everyone to understand, is that this disease does not wait for you to decide it's time.  It is an aggressive disease that isn't understood completely by doctors, so you have to stay on top of it.  They do not know what causes the gene to mutate and they still do not understand how to prevent it or cure it.  So, having said that, please understand how important it is to stay one step ahead of it.  I'm only one person, but I hope to find a way to educate more people about this disease.

Having said all that, Ashton goes for another colonoscopy/endoscopy soon.  Please keep him in your prayers.  We had our first dental visit today after finding out that Ashton had Garnder's.  He does have several problems with his teeth, but the dentist is hopeful and optimistic that we are ahead of the game and everything is able to be fixed.  Right now we only have two teeth to be concerned with.  YAY!  Next step, braces!

Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis