Thankful for Leaves

http://www.youtube.com/watch?v=S9_YeNO6jL4&noredirect=1

I spent most of my day today in the car for work.  This song struck me and was one I wanted to share with so many people in my life.  There are so many leaves of my family tree out there supporting me.

In the fall leaves on trees provide us beauty.  Just as winter approaches we get this amazing burst of color.  Leaves can brighten the landscape- provide color to a bland brown hill.  There are many in my life who have provided color on dark days.

Leaves are where energy is converted for use by a tree.  Without leaves this conversion process does not take place and the tree withers.  Believe me there are many of you out there that have provided energy on days that I felt I could not take one more breath, one more step.

Leaves aid in water transportation and prevent dehydration.  There have been many dry days lately and so many of you have provided much needed moisture to my dry and cracking soul.  Leaves also provide shade for the tree and keep it cool.  There are so many times I have rested in your shade.

Finally, one cannot ignore the beautiful sound of wind rustling through the leaves in the mountains or the squeals of delight when children dive into a pile of leaves and feel its crackling cushion catching them.  Leaves can be a safety net.  Leaves can provide calm.  Leaves can signal us to incoming weather and help us prepare.

You are the leaves on my family tree.  Those of you who read, who respond, who send notes, who smile, who cry, who listen, who pray.  I'm so thankful for leaves today!

Fighting Darkness and the Heavy Weight of a Strange Guilt

I got quiet, speechless.  Lately it has been difficult to find words.  I search for them but don't find the exact ones that represent things I've been feeling.  I can think of one descriptor- dark.  It seems like I've been on my knees feeling around for a flashlight but as soon as I think I've located it it rolls away and the search begins again.  I won't abandon the search but it's been a trying few weeks.  These have been dark days.  There are definite moments when the skies break and I am bathed in light but the dark inevitably returns.  And, in the dark the words I seek disappear. The silence is eerily soothing.  I think I'm breathing and regrouping- going through a valley, about to make a climb toward the light. 

Several of the women in my support group have buried their husbands the past few weeks.  One just made a call to hospice and she and her husband have decided to suspend treatments and let the disease take its course.  They are busy making memories with the time that remains.  These women are incredibly strong.  They share their stories to light the way for those that may have to walk the same journey in the future.  They are flashlights in the dark world of cancer. 

I wrestle with their losses and their stories.  I have a sense of guilt.  Brett is doing well.  His side effects have been fairly manageable.  His treatment has a large chance of being successful.  He very well could be "cured" or at least achieve a lengthy remission.  I feel badly that they have suffered such losses and we are having a very different experience at the moment.  I know they don't begrudge me this hope.  I know they are truly happy that we are on a different side of the disease.  But, the weight of this strange guilt has been sitting on my chest today- been difficult to catch my breath.  And, honestly, there's fear because I want to stay on this side of the disease.  I don't want to follow them.  They display amazing strength, faith, and grace.  Would I in their shoes?  Sure makes me examine myself deeply. 

I took a night hike once at a teachers' camp in Wisconsin.  It was amazing.  We sat in the dark for a few moments allowing our eyes to adjust.  We really could see our way in the darkness.  Because we were in the quiet darkness we saw and heard beavers alerting our arrival with slaps of their tail on the water.  We startled a deer.  We didn't see the bugs and critters that would normally startle me.  It felt incredibly safe there in the dark.  I feel safe in my recent darkness and I'm letting my eyes adjust to the darkness and walking the path.  I don't want to fear the dark but I don't want this hike to last much longer.  Time to find the flashlight.  I'm certain I'll reach it soon. 

Communication is a Two Way Street

If you've ever driven down a one way street you know you're pretty lonely.  There's no one on either side of you to look at or greet.  Today, however, I began to think about two way streets which in my mind are the opposite- two lanes going against each other with plenty to take in all around.  Is this what we really believe about communication?  I understand the metaphor to represent that communicating has to go both directions to be successful but today I thought about this metaphor a little more deeply.  Do we really want our communication to be represented by vehicles going in opposite directions and simply passing each other at some point?  Do we really want communication to be represented by busy streets and traffic and honking?  I experienced some of that today on some two way streets as I traveled for work.

I joined an online support group for cancer caregivers.  I wanted a place to share where other people "get it".  I wanted to connect with people going through some of the same things in life.  But, honestly, I was worried about connecting with strangers and building open communication in an online forum (she ironically says in a blog).  I wasn't sure how we could carry on dialogue and support each other without directly speaking, without sharing our last names, where we lived, and other details that might identify us to each other.  I was skeptical.  What I have found, though, is that I have bonded with several other caregivers online.  I know them by "name" and we check in with each other nearly every day.  We can be real.  We can say the ugly things we bottle up all day.  We can talk about how angry we are at cancer and its many inconveniences.  We communicate so well.  Today I was pondering why it works.  I think it comes down to two reasons.  First of all, we are all on the same street.  We understand the terrain.  Second of all, we're going down the street side by side, not against each other in passing.  We post and take time to reflect and ponder before reaching out to each other.  I think it has created an atmosphere of communication that is a model for everyday life and my interactions with others.  When I "talk" with these new found friends I first read or "listen", then I contemplate and prepare my thoughts, and then I respond. 

All of this pondering of two way streets and communication was borne from a problem I am having communicating with someone.  I say things that are taken incorrectly and then the response is defensive and hurtful.  I don't think this person is intending this and I'm certainly not intending to be abrupt or hurtful.  We obviously are having a problem- our communication car has broken down on the side of the road and we need a tow truck desperately.  Today I was thinking about what works in the online support group and how it could apply to this situation.  Maybe I'm not truly listening before I respond.  Maybe I'm not establishing a clear direction.  Maybe I'm driving too fast for conditions and I need to slow down and carefully choose my words and responses.  This person and I are definitely on a two way street when it comes to communication.  We pass each other and once in awhile we make a brief connection but it doesn't last as traffic flows.  We need to find a way to go in the same direction.  I'm challenging myself to make a u-turn this week.  I'm also challenging myself to replace the two way street metaphor with a new one to describe how I think communication can truly be represented.  With all the road work and detours going on around my home town it is definitely time for a new metaphor.

It's a Numbers Game

I've always had a fascination with numbers.  Lately my life has become all about numbers.  We are hoping the odds are in our favor.  We are counting down treatments.  We are worrying about dosages- 120 mg versus 180 mg.  We have been supplied five year survival rates.  We have been supplied percentage of risk that cancer will return to the liver.  We count mileage for our taxes. We count two days out from treatments knowing when Brett will have his worst day and then get better.  We count money for bills and expenses.  We count hours during treatment and hours between.

I try to count good things.  I count blessings.  I count friends.  I count good days.  I count jogging mileage in hopes of increasing slowly and steadily.  I count days until summer break.  I count days until my daughter's wedding.  I count days until my son's first baseball game as a varsity player with great excitement for him. 

I am admittedly a bit compulsive with my counting and measuring.  For example, I drive Brett completely crazy with my dislike for odd numbers.  I won't stop running at 49 minutes- I'll go 50.  I won't walk 21 laps at the gym- I'll go 22.  I like even numbers.  I like things neat and tidy and divisible into two equal parts.  It's a part of my type A personality that reveals itself more and more to me these days.  I like control.  I like to be in the driver's seat.  This does not mix well with cancer.  Cancer has too many unknowns.

It is difficult to be a control freak type A person and watch someone you love go through cancer treatments.  The side effects are unpredictable from day to day and there is really little I can do to help.  It is difficult to be a control freak type A person and reconcile where faith must enter in to life.  Where do I end and where do true faith and trust begin?  This brings me to my favorite number.  One.

One mustard seed.  I need the faith of one mustard seed to move mountains.  That's not a lot.  It's more than I have most days but it's not a lot.  I'm working on it.  I'm striving for it.  One risen savior to celebrate this beautiful Easter.  One risen savior who knew what a control freak I would turn out to be and loves me anyway.  One husband picked just for me who understands me better than I do some days.  One beautiful and loving family that lives and laughs in a chaotic house.  One battle to face and one God to carry us through it all. One promise of a hope and a future.

I will continue to live this life one day at a time and find at least one thing to treasure about each day. Today the blessings are numerous;  sunshine , father and son playing baseball, soon to be husband and wife coloring eggs, a great run, new beginnings and the hope and promise of the Easter season.  One great day!

It's a Miracle!

I was eating Jelly Bellies with Brett today after a nice long walk and talk.  We were sneaking them as sugar is his enemy but you've also gotta live and it's nearly Easter.  I hate buttered popcorn jelly beans.  Popcorn is one of my favorite snacks but it is absolutely not meant to be chewy.  I grabbed several Jelly Bellies and the last one was buttered popcorn.  I grabbed for a nice cinnamon one because the popcorn flavored one had left such a bad taste in my mouth.  

My last post left the same kind of bad taste in my mouth and I've been wanting to write again quickly and share a yummy flavor of life.  I'm not often good at liking myself but I do honestly like how I've aged at times.  I can be very down and negative but I let it go so much more quickly now at my advancing age.  I'm able to put it behind me- truly put it behind me- and move on.  Forgiveness is extended and life goes on.  I also have a better perspective and I really do find myself trying to see things from another's point of view.  Life isn't always about me and how I perceive things may not be how they truly are.  I've come a long way.  So, last week is over- hurts are gone and I'm all about fresh starts and new beginnings. 

I was born with a bad back.  As a child I was diagnosed with scoliosis and my hips were very uneven.  I remember the horrors of facing the start of middle school and wearing a lift in my shoe to even my hips.  The lift only fit in what seemed to me were the ugliest shoes available.  Needless to say, I didn't wear it faithfully.  In college a friend introduced me to running.  I found a release for stress and some thinking, praying, reflecting time.  I loved it.  In my late 30's I began to have many back issues.  Honestly, I've never had a back ache.  All of my problems were lower lumbar and I had left leg aches and pains, my old friend sciatica.  I ruptured a disc and had a laminectomy that held me for two years until I ruptured another one.  The first rupture was when I was playing with my dog and I jumped at her.  I felt it instantly.  The second was when I was in bed with a horrible cold.  I sat up and sneezed, looked at Brett, and said, "I just ruptured a disc".  All in all I have had 6 surgeries on my back and numerous injections for pain.  I had a lumbar fusion with brackets and six screws.  One of the screws was deep and began to hit a nerve so I had surgery to have the hardware removed.  I have the screws.  I put one on a chain to wear once in awhile under my clothes as a reminder of my journey.

Throughout my back struggles running was hit or miss.  I would try to get back to it but symptoms always put an end to it.  All of my nerve damage was related to my left leg and there were days that I did not know if I would walk from my bed to the bathroom.  I had numbness and pain and a drop foot.  I would get brief episodes of relief but full relief did not come until the hardware was removed a few years ago.  I felt like a new person.  I began to run.

On Sept. 11, 2010, I went out and ran 12 miles.  I am terribly slow so it took me an eternity but it felt so good.  I remember the sunshine, the song on my ipod when I hit mile 12, my steady breathing.  I was training for a half marathon and I was elated to have made it that far.  I finished, walked, and stretched.  Later that afternoon my knee felt a bit stiff.  By that evening I could not bend it and couldn't bear to put weight on it.  I did all the right things but days later I sought out a sports injury doctor in an effort to make the half marathon in October.  He was, and still is, a lifesaver.  He worked and worked with me and referred me on when he couldn't help any longer.  Last May I had knee surgery.  They didn't really know what they were going to find- MRI's were not clear as to the problem.  It was my medial plica (some people don't even have one).  It had become inflamed and was making the cartilage angry.  It was removed and the orthopedic doc told me that he usually tells a lot of patients to give up running after surgery.  In my case the knee looked very healthy and he saw no reason why I couldn't run.  I tried right away and the knee just did not want to cooperate.  I took the winter off running.

With Brett's recurrence of cancer I knew I would need some stress relief so I attempted to start running again.  I have been enjoying some great runs while he is sleeping during treatments.  This morning I ran a little over 3 miles to a local park.  With every step I was composing this blog entry.  What I discovered while running this morning is that I am a miracle.  I have had a total of 14 surgeries in my lifetime.  I have had screws in my back.  I have a two level lumbar fusion.  I had to rebuild the strength in my left leg so I was not lopsided.  I had to learn to walk again (twice!) without limping.  I have a muscle in my calf that shows no nerve conduction and I had to work to strengthen the others around it.  There were days I could not walk.  I can run.  I'm not fast but I never was.  I can run.  Wow!  I am a miracle.  Some might say I'm crazy and I won't dispute that butI am a miracle.  I used to rest in the fact that one day I was promised to "run and not grow weary" (that verse was written for me) but this morning I praised that I can run and get weary.  What a gift I have been given.  How blessed I am.

I believe in blessings and I believe in miracles.  I have experienced both in my lifetime.  I know healing is possible.  I have lived it.  I know Brett can also experience healing and that this long journey can have a very welcome and exciting finish line.  I just needed to go for a run and remember my own journey.  We've been carried through so much and we'll continue to be carried along. Heck, maybe we'll even break into a jog from time to time.   

There, that tastes much better!

A Coffee Cozy and a Kick in the Teeth

This post has been brewing in my mind for days.  I process things by writing about them but I have been feeling quite raw and did not know what to do with my emotions and thoughts and didn't feel like being open and human and vulnerable.  I follow a young lady who has struggled with cancer and her parents shared a video on her site. The video is a man sharing his story of losing his daughter.  It is raw and accurately described so many things I've been feeling lately.  It isn't pretty or beautiful yet it touched something inside of me and was exactly what I needed to hear.  It brought me healing to hear someone else share the ugly.  I needed the raw and honest and humanity tonight.  Then it occurred to me that others may need that, too.  After much prayer and reflection I am going to share the ugly and beautiful that is juxtaposed within my life these days. 

They tell you as a caregiver to ask for help.  I hear this repeatedly.  I read this repeatedly.  I'm not good at it.  After all, asking for help shows weakness.  Even though I believe that to rob someone of any opportunity to help robs them of the joy they receive, I still hear the small voice inside of me that says it makes me a burden to them.  I rarely ask for help.  Last week I found myself at the end of my rope ( a perfect metaphor because I felt like I was dangling off a cliff about to tumble into the abyss of insanity).  I just wasn't handling life well.  I needed to ask someone for help.  I agonized over it for days. Finally, I worked up the courage to ask.  I had no other option.  I asked.  I received the socially expected response for someone in my situation.  "Of course, anything!".  This was a request of someone I considered a friend whom I deeply respected.  To say that this person did not honor my request would be an understatement.  They actually, probably unknowingly, made the situation much worse and added to my stress.  I was injured.  I was so sad.  I was disappointed.  I tried to put it into words for Brett.  Finally, I told him it was as if I had been kicked in the teeth.  Yes, that's exactly what it was like.  Wow, it hurt.  It caught me by surprise.  Having had extensive dental work I know that when teeth are shifted and replaced your entire bite changes and you have to adjust how you chew and even how you talk.  This experience is causing me to adjust and heal and change.  I had to exercise forgiveness.  I had to move forward.  I'm working on putting it behind me.  I'm trying to get over the gut reaction.  I said I'd be human and raw- if someone kicks you in the teeth you really want to kick them back even harder.  It's a human reaction and I had it.  It didn't last but I had it.  I believe I used the word "assault" a few times.  I'm in the process of healing and learning to move on.  I'm also trying not to be bitter and closed off.  For several days I have really not wanted to interact or talk with anyone.  I think I've been afraid my emotions would flow freely and I'd never be able to reign them back in.  I expected the tidy request/response scenario.  It didn't happen.  I expected this person to know me well enough to realize I would never ask for something unless it was absolutely necessary and I was very serious.  They did not.  They played upon my vulnerabilities and loyalties and made my situation much worse.  Even as I write this it is hard to say that I will ask for help again any time soon. I worry that people think I'm seeking pity.  I worry that it somehow diminishes my efforts to help others.  I worry that people just get tired of hearing about cancer and its struggles.  It's a downer. That's just honesty and humanity and I'm trying to own it, put it out there, and work through it.

I do believe that life is always about balance.  To balance my life and my post I have to share another event this week.  In the midst of the hurt and anger and bitterness and sadness a dear friend came to my office (even though I didn't want to be with anyone and I'm ever so glad she did it anyway!).  She asked if there was anything she could do.  My friend is a knitter.  Earlier that morning I had watched a young woman at Starbucks refuse a cardboard sleeve for her coffee cup and pull the cutest knitted sleeve out of her pocket to slide around her cup.  I coveted it.  So, I told my friend I needed one of the cool coffee things.  She was quick to oblige and presented me with a beautiful coffee cozy.  A cozy- it hugs your coffee cup.  At the risk of sounding corny- every time I use it I feel like I'm getting a hug, too.  In the middle of one of the worst weeks of this journey something small provided such warmth and restored my faith in humanity. 

It's been a tough few weeks.  Today was a weekly chemo treatment and we had a balance of good news and bad news.  I am weary.  My heart is heavy.  This is not a journey for the faint of heart.  I'm needing to "re"- rebalance, refocus, rejuvenate.  A long road lies ahead.  I'm trying to get back to seeing the blessings.  I'm trying to remember the amazing friends we have who want to help.  I'm trying to remember that all of this- even the ugly- happens for a reason and growing and changing is often painful.  Life can be ugly.  I'm trying to give myself permission to feel that way from time to time. This is just one on of those times and this, too, shall pass. 

Pity Party

A pity party is not a party at all- there are no balloons, no loud music, no decorations....  After an exhaustive (5 minute) search I have not been able to locate the origin of the name of this event.  I have found some creative definitions and I can personally confirm that feeling sorry for yourself does not involve festivities.  In fact, it brings isolation.

Last week I had myself a pity party.  I think the reality and brevity of our situation really sunk in on so many levels. The long road ahead felt endless.  Bills began to pour in and I don't really think that is a metaphor as one day the mailbox was filled to overflowing and a few literally poured to the ground.  Side effects from chemo medications arrived- we knew they were coming, they still took me by surprise as if we would somehow be immune to them.  I did what I know I should not do and read medical journals about metastasized colon cancer and treatment success and recurrence rates.  Those are numbers, we are humans.  My head knows this, my heart has a difficult time rationalizing it.  Then, of course, I get angry- as if a five year survival rate is something to be celebrated- what are they thinking?  Five years is but a drop in the bucket.  Where are those 20-30 year survival rates?  Why aren't they publishing and celebrating those?  Who cares about five years- give me the 40 more we want.

Suddenly, I was five years old- stomping my feet (literally and figuratively) and rolling up in a ball and feeling oh so sorry for myself.  To show my advancing age and to quote my mother, "Nobody loves me, everybody hates me, I'm going to eat some worms."  I'm going to have to investigate that one further, too.  Who eats worms, other than gummy worms, when they are sad?  But, I think if someone had told me they'd make me feel better I would have eaten a bucket full.  These types of behaviors and moods and feelings don't make anyone want to be around so they lead to isolation.  This further feeds the pity- I began to feel very alone.

I know you are hoping for some beautiful clean wrap up to this painfully honest confession but I don't know if I have mastered how to avoid the pity party- turns out I'm quite an events planner.  What I do know is that yesterday, in the midst of my husband's birthday marathon chemo treatment, I turned a corner.  I had been praying- doing lots and lots of praying.  Lord, please restore my balance, my hope, my faith.  He never answers with a lightning bolt- drives me crazy.  In fact, this is probably going to offend someone out there but I believe we see God's image in that of our father on Earth and I fully believe God finds great humor in me.  He sees what is unfolding, I see what is right in front of me at the moment.  I bet I crack him up when I stomp my feet.  I think God laughs and I think I bring him great joy these days.

I have been so focused on my amazing pity party that I wasn't even seeing what was going on around me.  God decided to stop laughing at me and step in and help me out in a gentle loving way; A random text from a friend, an email from another, a friend of Brett's showing up to take him to lunch in the nick of time, a t-shirt I can't wait to order (I'm with the bald hottie), mountain views, baby calves chasing after Mama, sunshine, walks, laughter.  My son's baseball sponsorships falling into place so quickly- he raised $600 of the $1000 he needs in a matter of days this week.  My daughter's wedding materials all over my spare bedroom like a wedding whirlwind hit.  A new son-in-law that we adore who puts up with our craziness somehow.  He's definitely a keeper.

And, a birthday!  Brett had a birthday!  Yesterday it finally hit me how monumental that is.  We were blessed with another year.  Brett's initial cancer diagnosis was extremely serious.  I could have lost him three years ago.  Brett's recurrence was extremely serious.  I could have lost him a few months ago.  We had a birthday yesterday!  Wow, no pity party- how can you feel sorry about that? It's all a matter of perspective.

So, pity parties are not at all festive.  They are ugly and sad and useless.  I'll have more but I'll try to make them shorter so I can move on to celebrate the important things in life that truly deserve a party.  In fact, I'm thinking of throwing an impromptu "Glad to be Alive" party soon.  Time to celebrate.