Perception

I started 2018 being challenged with the idea of living victoriously (which I wrote about in my January blog post).  Counting the “too numerous” wonders that He has done has been my focus for these last 135 days.

However…

The month of March felt like April Fool’s Day.
Every.
Single.
Day.

In March, I found myself, rather abruptly, in an untenable job situation.  Never have I worked where I was unable to give adequate notice before resigning, but this situation required an immediate resignation.  And, within three days, from a completely different source, I was faced with accusations of performing a ‘breach of security’ and ‘violating the trust’ of (some) people.  Needless to say, the whole concept of living victoriously was put to the test.

~~~~~~~~~~          ~~~~~~~~~~          ~~~~~~~~~~

When you face the perceptions of people, you become the ‘whipping boy’ of their expectations.  When those perceptions come from those you’ve trusted, whether they be family, close friends, or even mere acquaintances, your character and your good name are forever impacted.  The challenge of dealing with people’s perceptions has been an ongoing struggle for my family and myself for some time.  The last ten years have been especially challenging for Football Fan and even though I have not shared specifics through my blog posts, there are some private battles that I have endured while dealing with cancer and all things cancer related.

No matter how many times I have tried to convey the impact that this illness has had on my whole person, there are some people who cannot and/ or will not comprehend that chemo brain is a real thing.  My ability to recall is challenged on a regular basis and it is enhanced by fatigue, stress, and unfamiliarity.  What this means is that when someone demands that I recall actions from many months ago (or even just yesterday), it’s going to take time.  If I can’t recall according to others perceptions/ expectations, patience is the protocol instead of varying forms of abuse.

Another impact of this illness is extreme fatigue.  In these last few months, I have been able to recognize and begin the healing process from this illness.  Approximately three and half years since my body, mind, and soul began the journey of physical, mental, emotional, and spiritual stress from three types of chemotherapy, six surgeries, forty radiation treatments, several weeks of physical therapy, multiple medications, surgically-induced menopause, and the removal of the societal standard of what constitutes a female, I am just now beginning the healing process!  My ability to function in normal society has been challenged severely.  What this means is that what I make time for is of no consequence to anybody.  I do what I can, when I can, because I am not guaranteed the stamina or mental clarity to do it later.   Whether I did it right or wrong, I took care of my blessed little family first and foremost.  After that, came what my family and I prioritized as necessary and important.  Just because we ranked those needs differently from others expectations does not imply anything other than we were (and are) doing the best that we could (and can) right then (and now), in that (and this) moment.  If I can’t perform according to others perceptions/ expectations, understanding is the protocol instead of varying forms of abuse.

As I heal from all things cancer, this includes the impact of other people’s perception/ expectations of ‘me and my shadow’ (because I am trying to insert a bit of humor into a weighty subject).   I will give you a very private tidbit about myself: I have never thought highly of myself, and this was before cancer!  This means that this illness has magnified this one aspect of ‘me’ by infinity (and beyond – again with the humor).  So when I am faced with other people’s perception/ expectations of ‘me and my shadow’ (see previous note), things will usually hit ‘my threshold’ of being a blubbering mess faster than the norm.

~~~~~~~~~~          ~~~~~~~~~~          ~~~~~~~~~~

Football Fan reminds me often of the passage found in Matthew 6:22-23, “The eye is the lamp of the body; so then if your eye is clear, your whole body will be full of light.  But if your eye is bad, your whole body will be full of darkness.  If then the light that is in you is darkness, how great is the darkness!

The concept that ‘perception is reality; therefore, reality is truth’ dominates our society, our family, and our minds, but we must guard against this mentality.

~ Just because we think it, doesn’t make it true. ~

Our Creator commands us, challenges us, and warns us through His perfect words to be mindful of what is in our hearts because it will always be reflected through our words, our actions, and our attitudes.

Live victoriously, remembering His truths. 

They are the foundation for His “too numerous” to count wonders that He has done.

Advertisements

Amazing Grace

As I started 2018, I was challenged with the idea of living victoriously (which I wrote about in my last blog post).  Counting the “too numerous” wonders that He has done has been my focus for these last 53 days.

Today, I want to talk about His amazing grace.

~~~~~~~~~~

When I was pregnant with our second child in 2005-2006, I spent about 28 to 30 of the 40 weeks being sick, being monitored, being watched because it was a difficult pregnancy.  A few days before my due date, it was discovered that the birth canal contained a varicosity (another term for varicose vein).  The doctor’s main concern was that a natural delivery would rupture the varicosity and that it would be medically necessary to stop the bleeding from that rupture.

The designated induced-delivery date was decided by my obstetrician, who had the bedside manners of a 2 by 4.  As I looked up to his approximate 6’7′ and 275 lb. frame and said, “But that’s my birthday…”  He gazed down at me with his ‘board’ bedside look and said, “Do you have a problem with that?

And so, on February 22, 2006, Football Fan and I arrived at the hospital at 6 am.  His mom was with us and his dad was volunteered to remain with Ukie Girl until a more appropriate time (and, I believe, a doughnut was involved too).  I was a bit of a fascination for some of the nurses because of the medicine prescribed to stop the inevitable bleeding of the soon-to-be-ruptured varicosity.  The discussion of an epidural was pondered by one nurse and she decided that since Ukie Girl came into this world without one that I would be fine without it.  (Uh, Mrs. Hindsight speaking here: “Don’t do it.  Just enjoy the benefits of an epidural when the word pitocin is involved.  Enjoy it, I say, enjoy it!“)

By 8 am, the nurses had introduced pitocin into my naive veins and the fun began!  I can’t remember if the midwife broke my water the first time or if it broke naturally, but the second time I experienced another break of water was a bit of a surprise to us all!  After that, I kind of lost all sense of being a humble, meek creature and became a pitiful, crazed woman who was clinging to the bed rail.  The midwife was telling me to practice my breathing techniques and I had no idea what she meant by the word ‘breathe’.  Football Fan was trying to console me and I vaguely remember whimpering, crying, screaming (what do words really mean?) “Don’t touch me.”  And then I needed to go, you know, like be excused to go to the bathroom, but nooooo, the midwife was like, its time to push and I remember thinking, No, I just need to go…

And she was here.  Princess I-Don’t-Care-For-Pink-Anymore had entered the world about 4 hours or so after I had been introduced to the not-so-friendly medicine, pitocin.  I was e.x.h.a.u.s.t.e.d. but the fun wasn’t over yet.

Ugh.
Double ugh.
Triple ugh.

Much later, in the privacy of my hospital room, the midwife began to describe a pregnancy that had been sustained by His amazing grace.  You see, my new little one’s cord had torn away from the placenta during birth.  That would explain why the fun wasn’t over yet: I remember very distinctly attempting to  crawl towards the head of the bed while the midwife was trying to manually remove the placenta from my uterus wall after I had given birth.  She HAD to ensure that everything was as it should be.  I felt like I HAD to get away from the pain…  As the midwife described all this to me, she also began to draw a picture of a normal vein/ cord system as a reference to my little one’s abnormal vein/ cord system.  She described how thin and spiderweb-like it had been, how fragile it had been, how amazed she was that it had survived throughout the entire pregnancy in its condition.

~~~~~~~~~~

Princess I-Don’t-Care-For-Pink-Anymore is one of His wonders in my life.  Every time I look at her, I am reminded of His amazing grace in my life.  Maybe sometime in another post, I’ll share with you how this particular wonder of His amazing Grace has taught my blessed little family some very important lessons.

Just an FYI: that destine-to-rupture varicosity amazingly never ruptured.
What a ‘wonder’!

~~~~~~~~~~

Many, O Lord my God,
are the wonders which You have done,
and Your thoughts toward us;
there is none to compare with You.
If I would declare and speak of them,
they would be too numerous to count.

– Psalms 40:5

Victoriously

As I sit here in my bedroom, typing, Ukie Girl, pronouced Eww-k-ee (formally known as Camo Kid) is watching a movie, Princess I-Don’t-Care-For-Pink-Anymore is on the couch watching a movie, and Football Fan is downstairs watching television too.  We have been fighting one form of sickness or another since at least December 15.  Ukie Girl and I are on the tail end of the yuckies; Football Fan and PIDCFP (see unabbreviated name above) have the energy of dehydrated noodles.  Fighting fevers for at least 48 hours seems to do that to big people and little people…

I hear the wind howling outside and I’m pretty sure the garage is colder than the freezer that is in said garage.  The dogs are stir-crazy for want of playing outside and yet when they go outside to do their thing, they end up doing a doggy style tippy-toe ballet.  Tutus for pittie pups?

Football Fan and I celebrated 22 years of marriage on December 16th, Christmas has come and gone and we didn’t get around to sending out Christmas cards.  New Years came and went and the sparkling grape juice is still in the fridge chilling.  And here we are on the 6th of January 2018…  It looks like a promising year so far!  (Yes, there is a smidgen of sarcasm in that last sentence.)

~~~~~~~~~~

This time 3 years ago, I was going through chemo and had lost most of my hair.  I was allowed the privilege to bear the burden of ‘all things cancer’ not knowing what that meant.  Even today, I am still learning what it means to carry that burden.

I still say that it’s 10% physical and 90% mental. 

I still battle the incompleteness that my deformed body presents to me.  I still battle the broken expectations of the future.  I still battle the side-effects that neuropathy, chemo brain, fatigue, and surgically-induced menopause so generously endowed me.

As I have been working through all of the above and even so much more, I want to share my focus right now.  In Psalms 40, David write this:

I waited patiently for the Lord; and He inclined to me and heard my cry.
He brought me up out of the pit of destruction, out of the miry clay, and He set my feet upon a rock making my footsteps firm.
He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the Lord.

 How blessed is the man who has made the Lord his trust, and has not turned to the proud, nor to those who lapse into falsehood.
Many, O Lord my God, are the wonders which You have done, and Your thoughts toward us; there is none to compare with You.
If I would declare and speak of them, they would be too numerous to count.

Sacrifice and meal offering You have not desired; my ears You have opened; burnt offering and sin offering You have not required.
Then I said, “Behold, I come; in the scroll of the book it is written of me.
I delight to do Your will, O my God; Your Law is within my heart.

I have proclaimed glad tidings of righteousness in the great congregation; behold, I will not restrain my lips, Lord, You know.
I have not hidden Your righteousness within my heart; I have spoken of Your faithfulness and Your salvation; I have not concealed Your lovingkindness and Your truth from the great congregation.

You, O Lord, will not withhold Your compassion from me; Your lovingkindness and Your truth will continually preserve me.
For evils beyond number have surrounded me; my iniquities have overtaken me, so that I am not able to see; they are more numerous than the hairs of my head, and my heart has failed me.

Be pleased, O Lord, to deliver me; make haste, O Lord, to help me.
Let those be ashamed and humiliated together who seek my life to destroy it; let those be turned back and dishonored who delight in my hurt. let those be appalled because of their shame who say to me, “Aha, aha!”
Let all who seek You rejoice and be glad in You; let those who love Your salvation say continually, “The Lord be magnified!”
Since I am afflicted and needy, let the Lord be mindful of me.
You are my help and my deliverer; do not delay, O my God.”

It is the noted bold passages that I am focusing my attentions on right now.
The wonders that He has done…  They are too numerous to count. 

Can you even imagine?!  

Some time ago, a godly couple whom Football Fan and I admire greatly encouraged me to live victoriously because of the work God was doing in my life.  I stared at her, stunned.  Victorious?  How does a person do that?  I had never lived a ‘victorious’ life.
I had lived a life of surviving, attempting to thrive.  
That’s what I do…

I adapt; I survive.
And I dream of thriving…

I survived not knowing my biological father.  I survived being sexually abused by my step-father.  I survived postpartum depression.  I survived a miscarriage.  I survived being ‘a pastor’s wife’.  I survived cancer.   I survived the heartache of broken relationships because I was trying to survive these things.  Through every step of surviving, He was there with me.  I was growing in my relationship with my God, my Creator; I was thriving.   Wasn’t that victorious living? 

Nope.

Victorious living is “Many, O Lord my God, are the wonders which You have done, and Your thoughts toward us; there is none to compare with You.  If I would declare and speak of them, they would be too numerous to count…  Then I said, “Behold, I come; in the scroll of the book it is written of me.  I delight to do Your will, O my God; Your Law is within my heart.”

Did you read that?  “I delight to do your will, O my God;”  And that my smiley (or non-smiley) friends is my focus right now.

What burden has He allowed you the privilege of bearing right now?

Will you join me in declaring and speaking the many wonders that He has done for us? 

Enter Title Here

I’m heading over to church for our weekly Wednesday night prayer meeting in about 20 minutes.

That’s what I do now: the next thing on the list.

~~~~~~~~~~

I am currently working as a lunch aide for a local charter school.  Previously (from September 2016 to April 2017) I was working 20 hours a week as an aide for a local state representative which became more than I could handle mentally and physically.  Now I get about 10 to 12 hours a week helping the lunch server wherever help is needed.  It’s just enough for me to manage mentally and physically and it also allows me to continue earning SSA credits in order to meet the credit qualification necessary to file for disability.  Twenty credits down, with 3 more to earn in 2018…

I tried to manage my pain medication with the recommended incorporation of ibuprofen in August/ September and ended up aggravating my previously radiated innards.  That was F.U.N.!  (Please note the sarcasm.)  The issue was resolved after about a week and a half of very bland food.

I have been dealing with new back pain and chronic headache/ lower head-neck pressure for the last couple of months.  If I don’t manage it proactively, it has the potential to feel like someone stuck a screwdriver into my eye-socket and ear.  I have completed a brain MRI that shows no metastatic lesions and the continued presence of mild Chiari malformation.  Tomorrow I will enjoy the radioactive qualities of a bone scan.  They say to let the technician know if you’re claustrophobic.  Great.  (Please note the sarcasm, again.)  The brain MRI was tons of fun…  (And again.) I need a cookie or two or twenty for being such a good girl.  Oatmeal raisin, please! (No sarcasm here.  Just cookies, please!)

~~~~~~~~~~

I do the next thing.  I get up.  I walk my dogs.  I start the girls on their school for the day.  I go to work. I come home and get the ‘house stuff’ done.  I rest for the rest of the day.  I forget to return your phone calls.  I forget to reply to text.  I take medicine to force me into a comatose state in order not to feel the discomfort of my spine and head.  And in all of this, I continue to learn the lessons of humility.

I spend many moments of each day humming bits and pieces of the hymns that my GREAT I AM brings to my heart.  I am reminded moment by moment to give thanks for His loving-kindness (“The Lord’s lovingkindnesses indeed never cease, for His compassions never fail.  They are new every morning; great is Your faithfulness.” – Lam. 3:22-23).  I learn not to lean on my own understanding or the understanding of anyone else because He is the only one who knows me, inside and out.

Here are my latest ‘bits and pieces’ of hymns from His heart to my heart to your heart:

Day by Day
– Carolina Sandell Berg
Day by day, and with each passing moment,
Strength I find to meet my trials here;
Trusting in my Father’s wise bestowment,
I’ve no cause for worry or for fear.

He Will Hold Me Fast
– Ada R. Habershon
He will hold me fast,
  He will hold me fast;
For my Savior loves me so,
    He will hold me fast.

It Is Well
– Horatio Spafford
When peace like a river attendeth my way,
  When sorrows like sea billows roll;
Whatever my lot Thou hast taught me to say,
  ‘It is well, it is well with my soul!’

~~~~~~~~~~

Do the next thing that you can do no matter what others may say.
Do the next thing for Him because you can.
Do the next thing with all the bits and pieces that only He can give to your heart.

Do the next thing.

Goodbye Breast Cancer Awareness Month:

Today is the last day of all things pink and I, for one, am grateful for that!

For each person who has or is battling any form of cancer, you know that a color doesn’t give you hope and that merchandise decorated with a color doesn’t pay the bills or hold you in the midst of your agony.  Sometimes, if the right group or the right company is led by the right person, then, and only then, do you actually benefit from the millions of dollars being donated.

Why do we need to make people aware of cancer? 

Why can’t the money being donated go for actual research or even as a means to help families bear up under the burdens of bills because of lost work and treatments? 

Awareness campaigns have become nothing more than a scheming industry where people earn hundreds of thousands of dollars in salary to promote a disease that everyone knows about.  

~~~~~~~~~~
This is what I would encourage you to be aware of as you donate money:
Be aware of the families whose lives are forever changed.
Be aware of the actual research that is being done in the name of colors.
~~~~~~~~~~

My Momma died of Metastatic Breast Cancer 17 years ago last month.
I remember much about her, but what I remember most is her last few weeks: my younger sister had just finished up her high school career about 2 months before and was enrolled in her first year of college and working to pay her bills.  My older sister was working full time as a teacher and taking care of her blessed little family all while coming home from her job and taking care of Momma in the evenings/weekends.  I was living 2 states away and working, learning to dread the ringing phone…

The day my older sister called asking me to come home was about three weeks before my mother’s death.  By that point, she was well on her way to a completely comatose state.  The cancer was everywhere in her body and she could not find relief.  During the day, hospice would come to bathe her and assess her.  Family and friends would come and sit with her as they were able.  But it was in the middle of the night when all was quiet that I would hear her groan in agony and despair, seeking relief from her torturous pain.

The keening cries of a tortured soul in the silent night can be deafening.

There was little we could do for her.  By that point, she had been given an IV drip that we could administer morphine by pushing the ‘button’.  There were days when we would watch the clock to see when we could give her the next allotted dose…  There were days when we would administer prescribed morphine suppositories because the IV drip was insufficient to give her relief…

We watched her continue to sink deeper into the coma as she lay in her hospital bed unaware of us but working diligently with her hands as if she were filing things away.  Occasionally we would hear her call out the names of people who had been gone from this world already.  We would watch her breathe waiting to see if if there was a next breath…  Hospice had taught us what signs to look for and so we knew that the end was drawing closer.  And as those who loved her were gathered near her, we saw the paleness of her skin become almost ethereal looking as she took her final shallow breath.  And then she was with us no more…

That is what Breast Cancer Awareness is all about for me.

Pink doesn’t hold me at night when I think of my own Metastatic Breast Cancer diagnosis.  It’s my husband’s arms or my children’s gentle touch that comforts me when I weep through the waves of grief that threaten to overwhelm me because of new pains that present themselves and new realities that are forced upon my body, mind, and soul.  It is my faith in Christ alone that gives me strength to even desire to continue onto the next moment and the next step.  I know what breast cancer is and I am fully aware of what it means.  I have seen it in action and I know what my fate will be…

Be aware of the people no matter what color of cancer they are enduring.

Momma

Today marks 18 years since my mother’s death.  

Eighteen years of missed:
birthdays
anniversaries
Thanksgivings
Christmases
phone calls
family gatherings
‘I love you’s’
hugs
Eighteen years of my girls never knowing their grandmother.

Eighteen years of missed everything…

Momma was an extremely talented woman with a gift for numbers, people, and hospitality.  Many knew her, but not many saw her for who she truly was.  They saw her size (she always struggled with her weight) and they saw her willingness to help anyone and everyone, but they didn’t see her zest for life, her hopes and dreams.  She wanted to be somebody, anybody, but she was relegated to being what was expected of her.  It’s been said that as a child she would try her hardest to get out of the expected ordinary tasks of life, but ultimately, she lived an obscure life with no accolades to boast of except her girls.

She could work magic on the sewing machine and could she cook, OH MY, could she cook!  Cleaning house was definitely NOT her favorite thing in the world, but she would get outside on the riding mower and you wouldn’t see her for a couple or three hours.  I remember her saying that she’d made a deal with the dust in her house:  She would leave it alone if it promised not to embarrass her in front of company.  And there were times when she’d whip out a sassy remark that would cause your jaw to drop to the ground in shock.   Oh boy, were they some doozies…

She poured all her hopes and dreams into her girls.  She was never allowed to go to college which meant that college was HIGH priority on her list for her girls.  To this day, my sisters are two of the most gifted women I know.  Anything they put their mind to, they achieve magnificently!

Gifted seamstress, educator, entrepreneur, chef, organizer/ administrator, and so much more – they can do it all!  They possess this innate drive to grab life by the ‘Oh, no you can’t‘ and redefine the meaning of ‘Who’s the BOSS now?’.  They are my heroes and the living embodiment of Momma’s zest for life, her hopes and dreams.

~~~~~~~~~~

Today marks 18 years since my mother died from metastatic breast cancer.
I wish my Momma and I didn’t have so much in common.

 

 

 

Year 1

On July 5, 2016 the doctor told me that the spread of my breast cancer, now consider metastatic breast cancer, gave me a life expectancy of 3 to 5 years.  That was, of course, after the 20 months that I had already spent moving my way through 3 types of chemotherapy, 30 sessions of radiation, and 5 surgeries.

I have made it through Year 1 which included 10 sessions of radiation and 1 surgery which has thrust me firmly into the grips of surgical menopause.  Again, I repeat from my last blog post that estrogen is a beautiful thing…
Embrace it.
Love it.  
Be grateful for it.  
For when it is gone, His grace becomes your life-line of daily hope for any and all mercy that is received and granted to all those in your path.

~~~~~~~~~~

As I reflect this Year 1 milestone, I ponder on just one particular thought despite so many blessings of grace and lessons of humility:

I am disconnected.

How do I begin to explain this thought?

I do not know how to re-integrate myself back into this world that continued to spin on its axis while I was forced to focus on all things cancer.
AND
I do not want to re-integrate myself back into this world that continued to spin on its axis while I was forced to focus on all things cancer.

I remember thinking the other day:  What in the world possessed me to agree to the ‘required’ first mastectomy?????? (Excessive question marks denoted my utter dismay.)  Would it not have been better to fight my cancer proactively in ANY other way than to amputate my body parts?????

As I attempted to articulate my horrified bewilderment to Football Fan, he reminded me that we did make informed decisions at the appointed times and he gently guided me to understand that, potentially, one of the reasons the doctors move you through treatments at an alarming pace is because getting caught in the ‘paralysis of analysis’ is a difficult place to be.

Making the decisions and living with those decisions are two different paths spread over fifty levels of difficulty.  That is the portrait of cancer, just as it is also the portrait of life: choices directed by beliefs.

I made the choice.

What was my belief???

Learning to live with those decisions while feeling like a foreigner to myself and the world around me is way past intense especially when you cannot even connect with what ‘intense’ feels like.

The only true thing I comprehend is that my non-sense meter for all nouns (people, places, and things) is elevated way past my normally extreme level of being the type of person who cares too much.

~~~~~~~~~~

Explaining this to you all could amount to many things.  Some will take it as an affront to their dignity, their rights,  In other words, offense.  Some will take it and pondered what in the world I am trying to convey.  Some will understand instantly, even though they may word my thoughts differently, because they have lived the spirit of experience through their own situations and circumstances.

I will say only this one thing, in conclusion:  What you believe determines what you choose.  I have many friends and family, but there is only one who has seen me as no other.  He is what I believe:

My Creator who knew me before I was a thought in my mother’s womb.

He who met me at my lowest point, broken and contrite in my sinfulness, and showed me His perfect Hope.  “Choose,” He quietly whispered to me, “Choose my perfect Hope which is full of perfect grace and perfect mercy.”

And even now, in the aftermath of all my choices, He continues to point me to the foot of that cross where His perfect Hope fulfilled the requirement to justify my sinfulness.  “There,” He points, “Lay it there.  Lay your uncertainty, your lack of care, your loss of sense and self, your disconnected life…

I, the only One who knows ALL of you, meet you there.

It is there I will remind you of my perfect love, my perfect grace, my perfect mercy, my perfect faithfulness.

All that you believe to be true.
All that you know to true.
All that is true because I AM.  

I am Alpha and Omega, the beginning and the end, the first and the last.’ (Rev. 22:13)  I am “the Author and Finisher” (Heb. 12:2) of what you believe, your faith.

I AM so that you may know how to choose to live with this imperfect condition in this imperfect world.”

~~~~~~~~~~

On to Year 2…

 

 

Greetings from the fish bowl:

My last day of work was April the 27th and today (June 1st of 2017) is the first day since my 2nd cancer diagnosis (MBC on July 5th, 2016) that I feeI like I am not completely overwhelmed.  Well, except for those upcoming homeschool evaluations.  Ugh.

I have finally come up for air in my little fishbowl of metastatic breast cancer!

Why a fishbowl analogy, you may ask?
Because I have the attention span of a goldfish or a squirrel or a 5 year old kid. (And since inattentive squirrels usually get squished and I’ve already been a 5 year old kid, I choose the life of a goldfish!)

~~~~~~~~~~

I had been working 20 hours a  week since the middle of September 2016 in order to earn disability credits and I was able to earn 5 of the 7 that I needed based on 2017 federal standards.  Hopefully, after the summer is over, as I am able, I will look for some ’10-12 hour a week’ job to fulfill the last amount of my 4th credit for 2017.  (You can only earn 4 credits a year.  Each new year changes the credit value (dollar amount) and resets your total amount of credits based on your age – Happy, happy birthday to you!  (I wonder what happens to Leap Year babies??)  Anyway, it really is fascinating information for the interested individuals; it ranks right up there with watching paint dry…  The federal standards for 2018 have yet to be set and so I will have to wait till then to know how to arrange my priority list for life!

How many times did you have to read that last paragraph?
Confused?
Overwhelmed?
Clueless?

Welcome to the land of social security where you become a disabled hamster in that big federal wheel!

~~~~~~~~~~

As for my current state of body and mind, I’m alive!  

My body:
Trying to recover after 30 plus months of cancer-related surgeries and treatments.

I have no breast, no ovaries, no uterus, and 30 extra pounds (since August of 2016).  On the flip side, I have life, liberty and the pursuit of happiness until a progressive group of someones get their way and chuck the Constitution.  Smirking is allowed…

Seriously though, I am tired.  Between recovery, loss of estrogen (surgically-induced menopause), and current medication, my plate is full and the flavor is less than desirable, except, of course, for the aforementioned extra 30 pounds.

Ladies, be thankful for estrogen.
Husbands, Just be thankful!

Estrogen is a beautiful thing that our Creator has granted us!

Without it (no supplementing estrogen for me since I have an estrogen-fed cancer), you get to experience the grace of God in abounding measure in multiple areas. (Follow this link if you wish to get the BIG picture.)

For now, my medication (Follow this link if you wish to continue that BIG beautiful picture.) is designed for post-menopausal women and has been causing me discomfort since about November.  Remember the hand/ wrist/ arm issues?  It’s the meds…  I’m wearing arm braces mostly at night while I sleep and about 43% of the time during the day.  The doctor says that the medication is keeping the cancer stable and that changing the medication will not guarantee a change in side effects.

So, live with the side effects, it is!

This is my course for now: taking medication designed to limit the growth of my cancer.  When it becomes evident that a particular medication is not working any more (preventing growth or severe reactions), the doctors will move me to the next medication till the same path occurs.  Etcetera,  etcetera, etcetera.  Over time, my body will not be able to endure/ combat the growing influence of the cancer.

My mind:
It’s somewhere out there.

I am a bit absent minded.  Focus is a growing issue.  Reading is for those very flighty birds.  Blogging is a struggle: focus, reading, typing, blah, blah, blah.  Conversation can be attained depending on the hour of the day and  I have acquired the proverbial ‘selective hearing’ without making an effort.  That could be a good thing: snickering…

The great Deceiver is working overtime with my ‘perception of reality’.  How I visually see myself continues to be an issue.  Battling the hormonal loss is not for the faint of heart.  Dealing with the enduring mental fatigue caused by pain is the pity party that I continually decline invitations.  Conversation with my Almighty Creator has to give Him a chuckle because keeping up with my ‘train of thought’ while having the ‘attention span of a goldfish’ would be akin to the loopiest roller coaster ride of all time!  (Feel free to define loopy as some have already decided to define my actions and attitudes based on their own perception of reality.)

All in all, I am moving forward and resting in Him, trusting in Him, and leaning on Him.  He is my great I-AM!  I am active and doing what I can, when I can, how I can, continuing to learn to live – day by day, moment by moment.  I do not live in bitterness or anger in regards to any aspect of my life: past, present, or future.  If you don’t believe me, then ask the ones who live with me 24/7: Hi Football Fan!  Hi Camo Kid!

~~~~~~~~~~

As a side note, I am off Facebook permanently.  If I remember correctly, there is a public group I had designated as No Smiling Allowed for those who wanted to follow my cancer journey via Facebook.  It may still be active and you are free to share my blog post there or wherever.  If you want to reach me personally, email me at nosmilingallowedATgmailDOTcom.

~~~~~~~~~~

Well, I’m off to swim because if you’re going to live in the fish bowl then you need to embrace the tepid water with your big beautiful eyes and your not-so-sleek, waterproof, goldish-colored body!

Till another gulp of air-
Keep that smile firmly placed in the right side-up position!

 

 

The Good, The Hard, And The Ugly

He whispers in my ear, “You aren’t even a woman. Look at those scars. No shape. No form. You’ve gain weight again…  Who would want you?”  He adds to my mounting insecurities as if he’s seen the reflection of my warped perception.

He sits on my sore spine, my burden shoulders, my swollen arm, my numb hands as if he knows exactly where to press his sharp talons on that one particular spot that makes me want to tear into the next person who says to me, “You look great!  How are you feeling?”

He reminds me of the friend who said to me, “Why haven’t you invited us to your house?” or the close confidant who often reminded me that “You make time for what’s important to you.”  He’s right there, flicking me on the side of my head, saying “How could you have forgotten that? You’re so stupid.  All you’re doing is failing.  You’re such a failure.  You can’t do anything right…”

~~~~~~~~~~

I haven’t written in a couple of months and to be honest, I don’t want to write even now for multiple reasons, but if you’ve walked the path that I am walking then you understand and if you haven’t walked this path, well then, words and time are insufficient to explain…

These last 2 months have been the hardest.  The mental battle wages fiercely and I have withdrawn to fight for every sane thought that allows me to go to my merciful and faithful I-AM and grasp at the hem of His garment just so that I move forward towards Him and away from the great Deceiver who is prowling, as he whispers my failures, waiting expectantly for me to let go.  I am exhausted mentally.  Physically, I just do the next thing: get up, move forward, do what needs to be done, rest, get up, move forward, do the next thing…

I grieve the loss of what was suppose to be.

As Princess Pink so adequately stated, “I just want us to be a normal family.”  We all grieve the loss of what was suppose to be…  We’ve made arrangements for the girls to have the opportunity to express their grief to a counselor.  At the first meeting, the counselor asked Princess Pink what she wanted from her,  her response: “I want you to take cancer away.”  Sitting there weeping, all I could feel was my failures of not being able to protect my blessed little family from… my cancer.

Who do you know that is grieving the loss of what was suppose to be?

My blessed little family lives in the bubble of isolation right now…  We share our burdens with each other, but there is no one else in our circle of people who knows exactly what we grieve.  We long to have someone with whom we can sit in the safety of their embrace and weep out our grief completely.  Someone who will not tell us that everything is going to be okay…  Just someone who will love us, shelter us in the comfort of their embrace and say, “I’m here.  Just cry…”

~~~~~~~~~~

I go for a routine CT scan on Friday.  This is what I will do for the rest of my life: a scan every 6 months or so checking to see if my cancer is stable or progressing.

In February, I had 2 MRI’s to see if my hand/wrist/arm issues were cancer related or something else.  Except for formally diagnosing me with mild Chiari Malformation Type 1, there is no definitive answer for the issues that I have been dealing with since the middle of November.  The best guess they could offer was neuropathy from the chemo treatments in 2015.   Mild lymphedema has set in on my left arm from the lymph node dissection in 2015.  I am not able to wear my wedding rings on that hand.  I continue to take sleeping medicine to combat the insomnia and lessen my awareness of the hand cramping and numbness/ tingling issues that wake me from my sleep.  I take pain medicine at night all the time now and if the night was more difficult than usual, I end up taking a dose of pain medicine during the day.

~~~~~~~~~~

There are good days.

There are hard days.

There are ugly days.

But ALL those days are His days and so I hide in Him because…

He is my refuge.
He is my Comforter.

He is my I-AM.

And as I cling to Him, He teaches me to trust Him…
not past tense trust,
not future tense trust,
just present tense trus
t: NOW.

~~~~~~~~~~

Do you trust Him?

Out Of Touch With Reality

Yes, I am.

I am out of touch with reality.
With your reality, that is…
My reality is on a tremendous learning curve right now.
~~~~~~~~~~
Christmas of 2016 was interesting because when you’ve been told 5 1/2 months earlier that you have a cancer that will never go away, a cancer that will end your life, you tend to look at things differently.

Things like, will I have the opportunity to celebrate another Christmas with my blessed little family?

Life goes on for you and everyone else, but your version of ‘life goes on‘ looks a lot different than someone else’s ‘life goes on‘.

I am learning how to suffer graciously.  I am learning how to answer comments and inquiries graciously.  I am learning how to act graciously in environments that have no idea what cancer and its treatments do to a person on an internal level.  And I am learning, at this moment, to be honest, with you, regardless of how much I love all things smiley… or how much I am out of touch with your reality.

Being out of touch with ‘reality‘ is the hard part though because I’m barely treading water in my own reality right now…

Work.
School.
Football Fan and the G’s.
(That’s what I call my girls, Camo Kid and Princess Pink, as a unit!).

This is what my energy level and physical capabilities can manage right now.  Friends?  Family?  Most days, they seem like just a memory.  There’s a handful that make the effort to inquire no matter if I get back to them or not.  The rest, well, I’m learning not to dwell on what I cannot accomplish.  It doesn’t mean I don’t care.  I just… can’t.

And that is exactly where I’m suppose to be…

I can’t.

It’s a very lonely place to be.  I can’t be who you want me to be.  I’m empty.  My blessed little family doesn’t even get the best part of me anymore; they just get the tired wife and mom.  Even now, I am avoiding going to bed…  Most nights of sleep have to be accompanied with sleep medicine in order to combat the pain and/or the insomnia.  Since November, I have been having hand/wrist/arm issues in addition to all my other cancer-related issues.  It could be anything and it could be nothing.  I just know that at nights, when I lie down, it’s not conducive to good sleep and that, with the ever present spinal issues, makes for long nights and slow mornings.  And long nights of non-regenerative sleep make for even longer days… and several ‘longer days’ make for ‘I really can’t’.

Have I been honest enough?

Here, let me be just a little bit more honest then:
Can’t is okay.  
In fact, it’s perfect.

I think I might’ve just put the oxy in the moron
Nothing better than a perfect can’t!
~~~~~~~~~~
It’s when you’ve reach can’t that you are ready to learn… and if what you believe determines what you choose, then folks, that’s where the process of learning to empty yourself of you and fill yourself with Him begins.

Welcome to my reality!

It is the perfect place to be…