Inner Monologue, Madness and Staying the Course

I have been in a dark place the past couple of days.  It's been very difficult to eat.  Not because of nausea, thank God, but rather because my taste buds are so fried that food tastes like ash or grit in my mouth.  I can take a couple bites of food and then I gag.  The rub is everything smells, looks and sounds great but then it enters my mouth and...bleck.  It is causing a significant amount of mental and emotional anguish.  I've bawled my eyes out on numerous occasions, tears flooding past my almost bald eyelids, throat sore and tight, "I can't eat," I squeak pathetically.  This happens about every mealtime.  It's so depressing to wake up in the morning with a growling stomach and then to realize that there is close to nothing that will pass this mouth without threatening to send me running to the bathroom.

After working last week amidst this minor crisis I came home Thursday night with a very sore throat, aches and chills.  By Saturday afternoon I was in the emergency room with a fever of 101.8 and all of the aforementioned symptoms.  They ran the works on me: complete blood count (CBC), urinalysis, EKG, and immediately wanted to take me in for a chest X-ray.  I refused this initially due to my diagnosis of Li Fraumeni, a mutated tumor suppressor gene which predisposes me to certain cancers.  (In my post Growing Gracefully and Knowledge of the Mutated Gene, I explain this in more detail.)  With Li Fraumeni it is often best to avoid exposure to radiation.  They said because I was complaining of flank pain they would wait to see if the infection causing this fever was urinary or kidney and then a chest X-ray would not be unnecessary.  When the urinalysis came back clear they were very concerned that I had a touch of pneumonia or bronchitis and were insistent that I go ahead with the X-ray.  So I did.  After a few hours of very excellent care at the hands of the staff in the emergency room at Presence St. Mary's Hospital I was sent home.  I had received half a liter of fluid as well as a dose of IV antibiotics while in the ER and was given more antibiotics to take for the upper respiratory infection they detected on my chest X-ray.

On the seventh day, I rested.

Last night I slept for about an hour.  As I lay there I wondered how I will survive the next two months on what little food I can get down.  Then I allowed myself to think ahead to a massive surgery that is also in my future.  I realized I was heading down a dark path and chose to turn my attention to the present in attempt to shrink things down to size.  I'm not sure it worked.

I asked myself.  "How do you feel?"
The first question I actually answered was, "how do I feel physically?"
My skin feels thin, as if a layer has been shed.  My eyelids hurt if touched; my fingertips are all smooth (my iPhone doesn't recognize my index print anymore); my tongue, throat and esophagus feel as if there is something growing in them which causes weird sensations and pain; and the inside of my nose also feels as if a protective layer has been removed.  I have persistent ear aches.  My digestive system lets me know where any amount of food, liquid or air is at all times.  My joints ache.  I'm hungry.  My system is overwhelmed.  I'm exhausted.

Then the question, "how do I feel emotionally?"
And I began contriving ways to tell my husband, friends, family and doctor that I was done with chemotherapy because this "crazy carnival ride" (as I've called it in the past) of being sick or just not-sick-enough to NOT get more chemo is driving me mad.  Not to mention I would be scheduling my surgery for late June rather than waiting until late August when my oldest son starts kindergarten and I want to ensure I don't miss his first day anyway.
I was writhing under the weight of the question.

"Silly me," I interrupted.
'Silly me' is something we say to each other in our family when we've done something funny, foolish or absentminded.  We don't use the word stupid.
Silly me.  While we were tucking our children in to bed just hours before this inner monologue began we had recited Psalm 23.  Our four year olds have it memorized.  This Psalm holds a few lines that are particularly prudent at this juncture:  

"The Lord is my Shepherd I shall not want.  He makes me to lie down in green pastures.  He leads me beside still waters.  He restores my soul...even though I walk through the valley of the shadow of death I will fear no evil for you are with me."

It wasn't until today, the day after the sleepless night full of inner monologues and madness, that I was really able to see things differently.  Not until after I started to pitch my plan to quit to my friend Cindy who probably thought I was mad but was kind enough not to come right out and say so.  Cindy took my three older boys for a walk while my little guy slept.  This gave me time for myself, time to read, time to think.  I called my mom to clue her in on my thoughts and plans.  She reminded me to "follow the peace" which has been a theme throughout her approach to addressing her breast cancer diagnosis.  She encouraged me to look for God's promises.

I read a post from a blog that I follow.  Lisa-Jo Baker posted about buying their first house.  What does buying a house have to do with seeing things clearly regarding cancer treatment?  Well, Lisa-Jo talked about her deep desire to be in a home of her own for the first time ever, with her husband of 15 years and 3 children.  It was when she shared about being at there point of "giving up" on her dream that it hit me...Quoting directly from Lisa-Jo's blog, these words spoke straight to my heart:

"And more than that, I deeply needed to believe that this answer was from God and not from the whims of the universe. I needed to believe that when we pray and we trust God with our hopes and we ask Him to protect us from the decisions we don’t know enough to avoid, that He answers us.

Because He is a good God. And I believe this. And I needed to believe the No was a loving act from Him and not just a matter of, “Well, that’s life.”

Because what is all this faith we talk about worth if in the moments of our greatest hurts or hopes it doesn’t count?"

http://lisajobaker.com

This caused me to remember that when treatment plans were first created I felt God's peace and presence.  I felt that He had led me to The Block Center and to those I would entrust with my care.  Even then I wasn't happy or excited about the prospect of chemotherapy.  But this treatment, this cancer journey, this life isn't about being happy, excited or even comfortable.  And since it isn't about all that, it makes this promise that came to my mind this afternoon all the more meaningful:

[Jesus said,] "Very truly I tell you, you will weep and mourn...you will grieve but your grief will turn to joy.  I have told you these things, so that in me you may have peace.  In this world you will have trouble.  But take heart!  I have overcome the world!"
John 16:20,33

And so, I take heart.  I will stay the course.  And I do have peace. 

Thank you Cindy for reminding me that I can't just "give up".  Thank you mom for reminding me to look back at the promises I've received in the past and to listen closely for new promises.  And thank you Lisa-Jo for posing the question "What is all this faith we talk about worth if in the moments of our greatest hurts or hopes it doesn't count?"  It made all the difference for me today, ladies.

Life in Paradox

I've started noticing the pink bumper stickers around town.  The ones that are in bold print, sometimes sport a pair of boxing gloves and proudly instruct, "FIGHT LIKE A GIRL".  When this symbol and phrase first caught my attention I was totally into it.  I thought, "that's right!"  Cancer is tough business no matter how you choose to address it.  While I didn't have catch phrases and logos the first time I was diagnosed with cancer, and never even knew the color of ribbon for osteogenic sarcoma until a few years ago (it's gold), I spent so much time at the hospital and with others of like age and diagnosis that I had a strong sense of community.

I've not been a ribbon wearing member of any group but I do understand the comfort and strength drawn from identifying with a community.  However, the more I think about the "fight" part of it, the more uneasy I have become.  In regards to the way I have chosen to approach this diagnosis and treatment, "fight" seems too combative. I would rather float.

Imagine this: it's a warm summer's day.  Looking out in front of you you see the sun's rays reflecting off the surface of a beautiful, crisp, clear, flowing river; shining like diamonds on the water.  You lift your face toward the sky, eyes closed gently and feel the warmth of the sun upon you.  The gentle breeze that blows keeps your temperature even and comfortable.  It's the perfect day.  The birds are singing their songs of praise.  The gentle lapping of the water matches the rhythm of your heart beat.  The scent of flowers in full bloom fills your mind with magnificent colors and images.  You breath deeply and as you do, you find yourself floating.  You are floating on the surface of the water and yet you do not get wet.  It is some miracle that carries you, effortlessly, freely, softly onward.  You float on your gentle way while in complete relaxation, complete peace, rest.

That is the place my mind takes me when I think too hard on fighting.  It's almost like, I can't.  Not that I give up, I don't give up.  I keep going but not in a forceful way, in a gentle way.  It must be gentle or I can't.  I know some people get pumped up with the call to fight and I even have my moments when I feel a sense of pride at the color pink or when thinking about how tough a person has to be to deal with an illness or disability and to thrive within it.

Often and lately people have been telling me how strong I am, how tough.  All I can say is I don't feel like it at all.  I feel weak, vulnerable and sad.  In the same respect I feel hopeful and resilient; I am filled with gratitude for all of the blessings in my life.    It's a wonderful life.  A husband the like of whom I never would have thought to ask for for myself.  Four beautiful boys who are healthy, happy, smart and loving.  Healthy and present parents, a friend who would do anything for us at anytime, a sweet little house, a dependable vehicle, a career I enjoy, food in the refrigerator and so much more...

I'm learning it's okay to live in a constant state of paradox.  Weak, vulnerable, sad + hopeful, resilient, grateful, blessed.  I'm a warrior princess but in the most calm and gentle sense of it.  I keep going and don't stop.  I'll do whatever it takes, but I can't think of it as fighting, I must think of it as floating.  

I've been so emotional of late, easily overwhelmed.  I've taken to reading very short devotionals, bite size pieces of encouragement.  Sometimes I have to read the same one a few days in a row because my mind and heart can't hold the full truth of it the first go-round.  So it was with the entry I will share here.  I read it after being home for a couple days after this last treatment.  Feeling totally depleted physically, emotionally and spiritually these words from the book Everyday Prayers & Praises lifted me:

Hope and Healing
My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever.  Psalm 73:26 NLT
Your body is amazingly resilient, yet terminally fragile.  Fashioned by God's lovingly creative hand, it was not designed to last.  But you were.  That's because you are so much more than your body and your soul.  Even if your health fails, He will not.  He is near.  He hears every prayer, even those you hesitate to pray.  Call on Him.  His hope and healing reach beyond this life into the next.

Amazingly resilient and terminally fragile.  Sad and hopeful.  Life in paradox.  I'll continue gently on and won't stop.  I won't stop.  I'll fight like a girl and float.

Stability and another Day One Done

The last two weeks have been among the most emotional that I've spent in some time.  I was crying about everything and anything but at the core is this deep grief over the loss of health, strength, energy and stability.  In times such as these the stability of family life is impacted, the stability of self, the stability of faith, all of these are tested.

I posted on Facebook that I was having a very difficult time preparing emotionally and mentally for this round of chemo.  It each of my previous two treatment have been rough rebounds and just when I'm feeling more like myself I find it's time to turn around and do it again.  It's a crazy carnival ride!  This round and round was truly testing the stability of self.  Could I make myself keep up with this?  I joked with Pete that he would have to tranquilize me and carry me in for chemo.  (I was only half joking at the time.)

During the last treatment my parents came to watch the fellas at home then took them on a road trip to visit their cousins in New Jersey.  So I didn't see my babies for a week and 3 days.  While I was in bed, weak, couldn't even SEE the housework that needed to be done and went back to work half days so I could go back to bed all afternoon, I still missed those children like mad.  I could see the absolute impact on the stability of family life that this illness and subsequent treatment invokes.

In some ways I was glad the boys didn't have to be there with me in bed all the time telling them to "go play" or "lets watch (another) movie" because that's all I could have mustered those first couple weeks after treatment.  They had a blast with their Mimi and Papa and getting to go to see Lillian, Maggie, Uncle Jake and Aunt Jeannine.  The joy those little boys bring to me cannot be measured and the healing produced in the midst of joy and love is boundless!  I was so happy to have them home at the end of it!  And I was starting to feel better, so that served to improve the time we would have together until the next treatment.
I worked on Monday and struggled.  I didn't struggle with work but with focus and clarity.  It was like my lifeline, the one strung between my heart and the heart of the Creator God, our heavenly Father, the Great Physician, was washed over by a wave of confusion and doubt.  The lifeline was all jammed up!  I was in the midst of a crisis of faith and I knew it.  But God provides.  He speaks to us out of the darkness, through the chaos.  He speaks in dreams, in nature, in Scripture and in the voice of a friend.  As part of my work day I was having computer issues, as we sometimes do in our workdays, and this required a meeting with someone I knew would not only assist me with my computer issues but someone I could talk to about my stability of faith issues too.

I've been known to say that "Faith does not call for certainty, it calls for hope and trust.  It calls for moving forward, one step at a time, regardless of whether or not the next foot hold is in view."  (From my last post "Dreams and Promises").  So I know that a faith crisis simply serves to deepen our faith through struggle and determination, resulting in a peace that no one can understand because it is simply Divine.  I was not afraid of this faith crisis, but I knew I needed to seek wise counsel in the midst of it.  Shannel had provided me with a shot-in-the-arm, faith-filler conversation at another point in my life when I needed it and here she was, on my schedule due to computer issues and I knew it was a Divine appointment that day.

Shannel reminded me to be open to God, to pray that whatever I might be thinking or feeling that it would not block the blessing that God had in store for me.  I applied that truth to the jammed up lifeline too.  I didn't want my fears and frustrations to block my path to God.  I wanted fear and frustrations to simply serve as reminders to look for grace and that Divine, unimaginable peace in the midst of them.  My friend reminded me that our view is so limited but God sees the big picture (how many times will God have to send friends in my path to remind me of this?!)  I shared my dreams with Shannel and began to recount God's faithfulness and provision in my life.  It was such a nice conversation of hope, healing and praise even in the midst of my faith crisis and Shannel's most recent loss of a loved one.  We know our heavenly Father is caring for us.  I left feeling uplifted and encouraged.

Tuesday we had a bit of a rocky start.  We didn't get out the door when we anticipated and the departure wasn't a smooth one with 4 boys wanting to go in 4 different directions.  I knew I was in for it when between our house in Kankakee where it was sunny and a balmy 70 something and the 11 miles to Cindy's house where the kids would be dropped off and staying for a few days the temperature dropped about 15 degrees (and falling) with a steady rain.  I had left my new spring jacket, yes rain resistant, on my bed because the weather report had said 70-80 some degrees for the next few days, so I packed accordingly!  I had based this on a weather report for Kankakee.  By the time we had said our good-byes (with tears shed by me), I had borrowed a raincoat from Cindy, and we had driven another 20 miles north the temperature was still dropping.  It dropped to 57 degrees by the time we reached The Block Center.  I was wearing sandals, linen pants and a short sleeve tee.  I was the picture of summertime.  Doctor Penny Block even made mention of my attire "looks like you're ready for spring" when she first saw me.  I wanted to borrow her overcoat!  I cried tears over my new coat that would have worked perfectly in such a time and temp as this.  Of course, those tears were not for the coat.  Here I was, about to "do it again".  This crazy carnival ride that just doesn't make sense, here I was hopping on for another go.  So, I posted on Facebook "Prayer support appreciated" and I must say, I could feel the prayers.  I know there are many friends and family who are praying for me and I have said it before that I feel lifted by those prayers.  It is true, always true.  I am so very grateful for those who pray, send cards of encouragement, share Scriptures and love and hope with me.

Today, another Day One, done.  It was a good day.  I was able to catch up briefly with a couple I met last time through my mom.  They asked about her and we talked a bit.  It was nice to have more familiar faces to see.  My nurse Jessica is just amazing anyway, but she always brings a smile, shares part of herself with me, and makes me laugh.  I think we have similar senses of humor.  It's just nice.  God chose the perfect nurse for me!  The PA, Jen who is as cute as a button both in looks and personality was such an encouragement for me today.  I had a breast exam for the first time since starting chemo and Jen confirmed what I already knew, the tumor has shrunk so much it is no longer palpable, neither is the one lymph node that could be felt at one time.  Such good news!  The treatment and the prayers are working!  Another thing discovered during my exam was that I have a hernia.  I had my suspicions ever since having William 20 months ago!  I had been having trouble breathing at times when trying to lift things so I was wearing the fancy little belly support bands that they give you after a c-section and using it to support my abdomen where I was feeling the strain.  Jen told me that was a really smart thing for me to do.  (I didn't know I was being smart, I just knew it felt better if I wore it!)  So she expressed that the type of reconstruction I'm considering for my surgery later this year (more on that later) would probably help to fix that, along with learning more yoga/pilates to strengthen those abdominal muscles that have been compromised.  I felt so validated and encouraged after that exam!

Cindy knew pictures of my kids would be just the thing to cheer me and so she sent pictures of their adventures throughout the day.  Each one made me smile. It's also such a blessing to know how well my kiddos are being looked after while we are here and they are there.

The next bit of encouragement I was to receive throughout the day was this post on Facebook, coming from a mama who is going through some kind of struggle I can't even imagine:  Joshua 1:9 "This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” This is their family's verse during a difficult time of seeking the health and healing of their young son.  She shared it in hopes of encouraging others.  It encouraged me today.
There have been so many who have left cards for me to find at my house (Cindy) and words of encouragement on Facebook, or sent cards, provided meals, all to show care, concern and support.  It is acknowledged and appreciate more than words can express.  And speaking of more than words can express...

My husband has been such an encouragement to me since this all started. Pete is/has been a cheerleader, a coach, a patient partner and hard worker both at home and in his career.  He shared this prayer with me at the beginning of our day, I shared it on Facebook but would like to share it here as well.  It is entitled "Let Your Healing Light Shine" from Richard Foster's book, Prayers from the Heart:

Let Your healing light shine, O God.
Give doctors unusual skill in the healing arts.
Give researchers success in curing diseases.
Give counselors insight and healing love.
Give pastors discernment and tender compassion.
Give social workers courage and boundless love.
Let Your healing light shine, O God.
Amen.

I go to bed (finally!) with a heart that feels stable.  I have received my "daily bread" as we ask for it in The Lord's Prayer.  And tomorrow I will need to make that request again.  But for now, I'm thankful that another day one is officially done.

Dreams and Promises

I've had two very vivid dreams in the last week.  Since I believe that God can speak to us in a variety of ways, including dreams, I've been thinking and praying on these particular dreams.

In the first dream I knew there was someone in my life who had had a baby that they did not think they would be able to care for and wanted to allow the baby to be adopted.  I had such a deep sense of love for this baby and determination that this baby would be a part of our family.  I was crying in my dream and stressing that this child was ours.  Even though the details hadn't been worked out yet I already knew it would all come together and the baby already WAS part of our family.

Birth in the context of a dream can symbolize a number of things.  Of course many pregnant women do dream about their babies before birth.  I, however, am not pregnant.  Birth can also symbolize something new in life that will cause a great change.  Since I consider life precious and every birth a miracle, I am really excited to have a dream such as this and see what miracle or wonder is in store!  I've been praying to be open to what God would have for me and would be aware of this new work that He is doing in my life.  And I pray that Pete, my partner in all of this life, would also have eyes to see where God is leading and what He is doing in our life and family.

There have been no clear changes as of this moment.  But there is ALOT going on in our family right now and this dream of birth has at the very least increased the measure of hope I hold in my heart.  It lead me to revisit the Scripture that was my theme verse during my first experience with cancer in 1991-92.  I have referenced it before but will reference it again here:

Jeremiah 29:11 

" 'For I know the plans I have for you,' declares the Lord. 

'Plans to prosper you and not to harm you. 

Plans for hope and a future.' "

The second vivid dream I had week has truly touched me to the core.  I'd like to give a little back story before sharing this dream.  In one of my previous posts "Growing Gracefully and Knowledge of the Mutated Gene" I explained results from one of the genetic tests I've taken since being diagnosed with my second primary cancer in just 22 years.  I tested positive for Li Fraumeni, a genetic syndrome that has to do with a mutated cancer-suppressor gene.  I am still learning more about it and would encourage you to google it should you be interested in learning more.  The long and short of Li Fraumeni is my risks for developing cancers is more than the average person.  Sometimes substantially higher.  Since learning of this mutated gene it has been an emotional and intellectual roller coaster for me.  I've told myself, "this is simply information that will inform the future of my medical treatment and care."  Intellectually that makes sense and is true.  Emotionally, I've felt as if I'll be chasing my proverbial tail (cancer) for the rest of my life!  And since it is genetic, there's a 50/50 chance each of my children may carry the gene and I can't even begin to imagine what that will mean for my family and the future of each of my children.  I'm so grateful for my faith that reminds me that I do not hold the future, but I know Who does!  Faith does not call for certainty, it calls for hope and trust.  It calls for moving forward, one step at a time, regardless of whether or not the next foot hold is in view.

This next dream of mine I'm still praying on, but let me say that I get chills every time I recount it.  In my dream I was driving a car (not my mommy mini van!) and it seemed to be indoors for some reason, but there was a sidewalk beside the road.  I passed an orange (my favorite color) tricycle on the side walk.  I noticed it but didn't think much of it.  Then moments later I saw it again further down the road.  At that point someone said to me, "Sarah, would you look?!"  Obediently, I stopped the car, got out and was looking more closely at the tricycle.  The voice instructed again, "Sarah, look!"  When I looked up I saw a vehicle further on past the tricycle.  It was a black vehicle and I instinctively looked into the back seat.  On a leather seat a pretty elderly lady was sitting there and when she saw me she smiled and said, "Sarah, do you understand?  Do you know who I am?"
Immediately I began to cry (in my dream and in reality) and nodded my head.
"Yes, I understand," I replied.  That old woman was me!
Since being diagnosed with breast cancer in February I've not asked God for reassurance that I will be here to watch my boys grow up or to celebrate a silver anniversary.  While I understand the gravity of this cancer diagnosis I have tried not to look too far ahead, as that can be greatly overwhelming.  I'm simply hoping to get a good sleep tonight, I don't have the energy to worry about what tomorrow will bring.
I am learning to have more faith for myself but also more faith for others when I pray on their behalf, impatient to see my expectations met.  (More on that later.)  In my heart it is clear that healing does not always come on this side of heaven.  Answers are not always given here on earth.  Sometimes God wants us to wait and talk to Him about it in person.  So, whether these dreams are direct messages from the God whom I trust or merely thoughts for me to ponder, I choose to put my hope in Him and continue to praise him.  I will keep my eyes on Him and will not be shaken.  I read this today and it blew me away.  I pray this brings encouragement and hope, a refill of faith, to all who read it:

                 Psalm 16:5-11 NIV

Lord, you alone are my portion and my cup;

    you make my lot secure.

The boundary lines have fallen for me in pleasant places;

    surely I have a delightful inheritance.

I will praise the Lord, who counsels me;

    even at night my heart instructs me.

 

I keep my eyes always on the Lord.

    With him at my right hand, I will not be shaken. 

Therefore my heart is glad and my tongue rejoices;

    my body also will rest secure, 

because you will not abandon me to the realm of the dead,

    nor will you let your faithful one see decay.

You make known to me the path of life;

    you will fill me with joy in your presence,

 with eternal pleasures at your right hand.