I Choose Love

CANCER is ominous, foreboding.  There is a feeling as though mortality hangs with uncertainty over my head.  The worst kinds of thoughts come rushing.  "Is the medicine to prevent the cancer from spreading worse than the cancer?  Am I still worth something when I feel like I can barely get out of bed and function?  Wasn't it enough to face this when I was thirty-four...why must I face it again?  HOW do I face it again?  The hardest one that hit me tonight when I was feeling physically awful, "When I die, will my husband still love me.  Can he forgive me for my faults and failings?

Tonight instead of allowing those swarming, ravenous, predator thoughts free rein, I CHOOSE LOVE!  I choose to remember the warmth of heart that generated a wall filled with beautiful cards with loving thoughts.  There is a card from Egypt, and a card from England.  Loving words from loving people. 

I choose to remember the beloved friend that understands that I feel awkward now that I have no breasts.  She understands so she sent me two gorgeous dresses that help me feel still feminine, still a woman.

I choose to look at the paper chains of brilliant colored hearts on my wall put together by a couple that I claim as an important part of my heart.  There are also flowers on my wall of different sizes and shapes made out of paper.  I can't be allergic to paper flowers. (I am allergic to most others).  They also brought us so many groceries that our fridge and cupboards groaned with joy.

There is a string threaded with multi colored butterflies that two of my great-nieces made for me.  Each butterfly dances in the breezes that move the air in my room.

I'm in a bedroom that is perfectly cool and comfortable.  Another friend insisted on purchasing a portable air conditioner so that I would not suffer ill effects from the heat.  It has been lovely to be able to control the temperature of the space where I spend most of my time lately.

I'm in a lovely room, just me, in a most comfortable queen sized bed, while our two beautiful daughters share a room.  They gave up the chance to have a bedroom to themselves when I moved in.  They treat me as though I'm royalty.  They have cared for me and about me throughout this entire process.

On my bed are two quilts.  One of them is quite old, almost 40 years old.  My Mama and I hand quilted it.  Over the years the quilted stitches came undone, so I quilted it again.  Mama chose the fabric, and I can see her working over it, pouring love into each and every stitch.  My other quilt?  My sister-in law stayed up most of two nights to create a beautiful quilt for me.  It has squares of beautiful fruits and vegetables with loving messages tucked in the quilt by stitching.

Speaking of loving, when my sister-in law learned of my 2nd bout of cancer, she brought her daughter, and two of her grand daughters (that I'm close to) and took all of us to the beach for a week.  It was life affirming.  The beach is healing to my soul.  I was born not far from the ocean in southern California.  The sound of the waves seems to make my heart beat more evenly.  Being in that lovely place, with beloved family, eating delicious food (that I didn't cook) was marvelous!
They stayed to help as I underwent a double mastectomy.

Meals were brought in to our family for a week from our church group.  Dear friends have taken us grocery shopping to make certain that we have nutritious food.  They cook a meal for us once a week.  A neighbor ordered pizza for us.

Both of our girls had the same marvelous teacher in grade school.  She sent us a card to get food from one of our favorite restaurants.  The food was extra delicious seasoned with such love.

Our girls bought me leggings to wear from a street vendor.  When she heard about my medical situation she donated an extra pair for me.  This woman didn't even know me.

I have been napping a lot lately.  Before this diagnosis I struggled with chronic fatigue.  I have reached a new level, sometimes walking from my bedroom to the bathroom is exhausting.  I awakened feeling self-pity.  When I came out to the living room there was a lovely fleece blanket made for me by another cancer survivor....a friend of a friend who heard about my situation.

I posted on a website for the women of my church group that I wished to borrow an 18 inch doll so that I could sew some doll clothes, while I'm healing, to give for Christmas presents.  The next thing I know four women volunteered to give or loan me a doll.  The amazing part was that one of the ladies had a daughter who had been given a special bald 18 inch doll when her sister battled with leukemia.  They felt that it was appropriate to pass on this very special bald doll to me as I battle on with cancer.  Another lady brought me patterns, and tons of fabric and notions to create lovely things with.

Many beloved people tell me that I am strong.  It is difficult to hear because I don't want to disappoint anyone by being weak.  Quite frankly, my body feels quite weak right now.  Yet, how can I possibly give in to the negative thoughts I spoke of in my first paragraph?  I have been celebrated, comforted, and cossetted with love.  Tonight I choose love, and ways that I can also return love. 

A Naked Emperor?

There is a childhood story that I always found entertaining.  It's about an Emperor that pays more attention to his fashion sense than he does to the needs of the populace.  A tailor comes in to town that convinces the foolish ruler that he is making a suit so beautiful, so spectacular that there has never been anything like it.  The king proudly wears his new suit in a grandiose parade.  A child has the honesty to point and say, "Mommy, why does the king have on no clothes?"

Battling cancer for the second time sometimes leaves me feeling chagrined and naked.  Granted, I am not anybody's ruler.  I am also aware when I have on no clothes, so this is not the perfect analogy.  On the other hand, with this invader in my body I feel as though the world can view my weaknesses, my imperfections.

On the other hand, I don't wish anybody to believe that I am wondrously strong, an example for everyone to see.  I had a miserable day today.  I felt distinctly camel like.  (As in the straw that broke the camel's back)?  The straw was the way that health crap leaves you needing twice as much money, with no ability to earn it.

Now some of you may be scratching your heads thinking, "WOW...she thinks she's a ruler AND a camel?"

My entire life has been shaped by one medical challenge after another.  When I became an adult I realized all the chaos that had been in our family because of my medical needs.  Even in 1956, continual medical need cost a great deal of money.  As I grew older, there were better medicines to give me a better quality of life.  Unfortunately, the new medicines cost a whole lot of money.

Then...many car accidents, multiple falls, damaged back, bad knees, fibromyalgia, and two breast cancers later...sometimes I feel like I'm cobbled together with bills, pills, and ills.  The other two rhyming words are trauma and drama.  On days like today....I felt naked, like everyone in the world could see my foul mood and my pity party.  The reality is, if they didn't before, reading this they will.  (Disclaimer, very few people read this blog).

Why the venting.  Somehow putting my emotions into words on a page helps me to sift and sort through them.  I don't want tomorrow to be as bad as today.  What made today so horrid was my attitude about it.  Granted, I don't believe there really IS a very positive attitude towards cancer, or other health problems on an everyday basis.  As a great singer once sang, "Sometimes you're the windshield, sometimes you're the bug."  I felt mostly bug like today.  (OK, now I'm ruler, camel, AND bug)?

One of the best things in life is that we are given fresh starts, over, over, and over again.  I look forward to a new day. 

The good, the bad, and the phantom pain???

Years ago, a movie came out with the title, "The Good, the Bad, and the Ugly."  I never watched the movie.  It looked like the kind of thing that I do not enjoy, gritty, dirty, and violent.  UGH.  On the other hand, I've made use of the brilliant title on a number of occasions.  This is one of them.  Please note that I did substitute a couple of different words for "Ugly."  I believe they are quite synonymous with ugly.

Today was mostly good.  It did not start out that way.  I had a very rough night last night.  I felt terrible.  I'm still battling with an infection.  It causes pain and general misery.  I couldn't sleep, even though I was exhausted.  In the dark, my mind raced into and around every possible negative scenario that can happen when a person battles cancer.

When I finally got up I went about performing the little chores that constitute living in our day and age.  Every little thing is exhausting right now.  I can't explain how much energy it takes just to turn on my side in bed.

I have been very worried about the extra heavy load our girls are carrying in working, and trying to care for their ill mother.  They never complain, they are two of my greatest blessings in life.  I simply can't imagine how I would manage without them.

The next thing I know, one friend has purchased us a weeks worth of groceries.  Another friend hands our daughter a substantial amount of cash.  If one must face cancer having a loving support group helps to take out some of the sting and suffering!

The bad?  Facing myself in the mirror.  I'm sixty-two, have given birth three times, (our little boy passed), nursed two babies, and my breasts were far from perky.  (If that is TMI....sorry, just being a bit real for a moment).  It's one thing to look at your own old lady crests and quite another to see lines of sutures marching across your chest wall.  I tried to prepare myself for this eventuality before I had my double mastectomy.  I'm not certain that anything can prepare you mentally.  Actually, I guess my bad, can also double as my UGLY!

Phantom pain?  Sometimes my breasts itch.  I reach to scratch the itch...THERE IS NOTHING THERE TO SCRATCH!  The worst though, is when I get the same old miserable pain in my nipple from radiation during my first bout with breast cancer in 1991/92.  One should not have to endure nipple pain that severe, when one no longer has a nipple!!!

I do understand that my brain is still receiving signals from the nerve endings in the affected area.  This means that whether you have lost a foot or an arm...your brain still tries to convince you it's still there.

Our baby was only sixteen weeks when he died inside me.  I had a D&C (medical procedure where they remove all the pregnancy related tissue in the uterus).  For a full year afterwards my brain kept telling me that I was pregnant.  I kept feeling the baby move.  I would repeat over and over, "You lost the baby.  You're not pregnant...and yet I would still feel him move within me.  That was most distressing.  Each time I had those sensations it was like losing him all over again.

I did not write this blog to depress anybody  Life is filled with hard, challenging, of all types and dimensions.  Many times it would be easiest to just give up.  The song says, "What doesn't kill you makes you stronger."  Sometimes...hopefully only temporarily...it might turn you into charcoal.  You know the lump of coal BEFORE the pressure turns it into a diamond.

From birth I had severe allergy asthma.  I was born in a time when the only treatment for asthma was to give oxygen and pray that the attack would subside.  I spent many times in a hospital in an oxygen tent.  As I grew a little older, my Mama would stay up with me all night.  I would lie in our recliner because I could not lie flat in a bed.  I couldn't breathe at all if I was flat.  After a long night of just struggling to breathe Mama would say, "Oh listen?  The birdies are singing.  We've lived through another night."

I have known all of my life without a doubt that life is precious.  Even in that awful extremity (it is miserable when you can't breathe) I knew that there was a validity in fighting.  I will not give up now.  I will fight on...please do the same!  

Medical Technology - Greed and Gouging

My great grandma was diagnosed with diabetes in the 1930's.  It was a terminal illness.  She went blind first.  My Mama was 10 years old when she came in the house one day and found her beloved Grandma lying sprawled on the floor amidst broken bottles of tomatoes.  Her vision had failed and she had tripped and fallen.

Before the disease, she was a community midwife, mother to twelve children, she churned the butter, made the cheese, grew an enormous garden, bottled her own fruits and vegetables to tide them over the winter, sewed their clothes, cooked three meals a day, cleaned, and was beloved by friends and family.

After the disease took her vision she would sit in a chair and crochet all day.  At the end of the day her daughters would take out the stitches and the next day hand her the yarn to crochet all over again.  At least she felt that there was something she could do.

It seems impossible in the year 2018 that less than a hundred years ago diabetes was a terminal illness.  Now it is a treatable illness.  Many people live a normal life span.  The discovery of artificial insulin has saved the lives of countless people.

My husband had diabetes 26 of the 27 years that we were married.  His health became so complicated that nobody would insure him. (Yes, there was a time that having poor health made you uninsurable).  He went without insulin many times over the years .  His blood sugar would rise as high as 700.  Having your blood sugar this high leads to diabetic ketoacidosis.  When this happens it thickens your blood.  When the blood is thickened it can't move through the human body in the way that is necessary to sustain life.

 After around twenty years of living with diabetes, he found out that because of all of his medical expenses, there was a company that would pay for ALL of his diabetic supplies.  It was far too little, too late.  He had to have laser surgery for the bleeding in his eyes.  He developed a diabetic ulcer in his big toe twice.  He died at the young age of 54. 

I recognize that we live in a capitalist society.  It does not horrify me to see people in medicine make a profit...but at what point does profit move into price gouging?  Here is an example.  In one of many of my husband's hospitalizations he received an itemized hospital bill.  There was a charge that we did not understand.  It was for, "independent mucus retrieval system."  HUH?  When we called to determine what this $8.00 charge was?  It was a box of kleenex.  The box was in the room when he arrived.  I think the next time he had to hospitalized I got rid of their "independent mucus retrieval system," and brought him a box of kleenex from home.

This type of charge is gouging....charging far and above a rate of reasonable profitability.  Often patients will be too ill to even notice bogus charges on their hospital bill.  Often insurance companies will be given a deep discounted price, and then the patient is charged full price.  This means that the  patient winds up paying for the insurance companies discount.

How ludicrous that we proudly speak of American's wonderful medical system...but people are still dying because they can't afford life saving items, such as insulin?  Visiting the UK, we stayed with friends.  The husband had diabetes and other diseases.  All of his care and medication is paid for.  In other words, he never runs the risk of having to go without life saving medications.  Perhaps we should not try to pigeonhole profit into medicine.  Just a random thought, maybe we expect medicine in this country we're proud of (and I am) to be a RIGHT, not a PRIVILEGE.

Pharmaceutical companies do help the desperately needy with some of their medications.  They still make billions of dollars in profits.  One of my husbands medications literally cost $15.00 for one pill.  I know for a fact that the company could have profited if they charge $1.00 a pill.  Is there no oversight, no accountability for these greedy gluttons of pharma?

Many of the hardest hit by health insurance and prescriptions are America's middle class.  They may work two or three jobs to try and pay for living expenses.  They do not qualify for any assistance They also have to pay a lot for medical insurance, and also have a huge out of pocket expense before they can recoup any medical expenses.

It is truly unbelievable that we have some of the greatest medical technologies in the world today, but only the very rich are able to receive that type of care.  The very poor sometimes can finesse through the system to get almost adequate medical care.  Actually, if you want primo care, commit a crime.  In the jails they provide all types of medical attention.  What you don't want to be is a hard working middle class American.

Tears and Fears

I shouldn't have done it.  I really do not want to know what may lie ahead for treatment with cancer.  Google can make it far too easy to look towards possible treatments.  How many people in my position would be thinking....HOORAY, cancer treatment for possibly a year, or the rest of my life, treatment that can make me deathly ill, and possibly kill me? I like to think that most people are rational enough to understand that is NOT a pleasant prospect.

I like to be positive.  There are so many wonderful things about this life.  Right now I'm listening to the best sound in the world to me, our two beautiful girls in the kitchen creating a meal for our family.  They joke, laugh, sing, dance, and create food that is very nourishing.  I hear their father in their voices, their laughter, and he lives on.

I prefer to be positive for it is pretty certain that I will only live this life once.  I would prefer to live once and done, and then move into an eternal forum without the many difficult challenges of this part of our forever existence.  If I can live this life once, it impels me to look beyond the dark dreadful of drama and trauma.

There is a bittersweet quality to cancer, to chronic illness, to disability, and even death.  The bitter is very obvious.  The sweet is more of a surprise.  In the middle of hard, love seems to gain a shimmering brilliance.  Caring comes in most unexpected ways.

While my husband lay in a hospital bed dying our neighbor called and asked if she could do anything.  She was a busy mom with a darling toddler, and a loving husband.  I told her that we were fine. An hour later she was with us in  hospital room with hot cocoa and cookies.  She explained that she was going to be cleaning my kitchen.  When her father had died, their neighbor had cleaned her mother's kitchen.  It was a simple act.  Yet great love passed from friend to friend.

 It is very easy to give in to fear for the future right now.  I mean, I'm staring cancer straight in the face to see which of us will blink first.  My dear Papa taught me that courage is NOT the absence of fear.  True courage means facing the hardest things.  He taught me through his excellent example.  He battled with cancer for five years.  He fought very hard, for life was truly precious to him.  Thanks Papa for teaching me how to continue living in the face of hard!

I will continue to do my very best to be positive.  Sometimes I may have to squeeze and shake the sweet out of that bitter.  If you see me somewhere shaking and squeezing...well you'll know what I'm doing.  

   

Post Surgery

A double mastectomy constitutes major surgery.  The process impacts most functions in the human body.  I've had two breasts since 1968.  My body had become extremely comfortable with their existence.  Then?  Having them both excised is traumatic on every single level. 

Physical?  The hormones that created these creations have now caused them to become a threat.  After the mastectomy it was discovered that I have FOUR tumors, not just the two already seen.  In addition it appears that it has begun to spread into a lymph node.  This raises a new type of alarm.  Has it also spread beyond this part of my anatomy?  Tamoxifen will stop the spread of estrogen into my lack of breast tissue.  It will not kill any existent cancer cells.  So, chemo?  Radiation? 

Emotional?  I have reached a point in my life when  feel happy to be shaped in a feminine way.  I love to feel pretty, stylish.  There are not curves any more, just lumpiness.  What if this is the beginning of a journey that will end in my death?  What can I do to ready myself if that is an eventuality?  How do I find joy in my days, even if my days are filled with pain, infection, complications?

Spiritual?  This is the one area that I feel most confident.  This is my second battle with cancer.  I have over a lifetime developed a life philosophy that usually serves me well.  I lost my beloved husband 6 years ago.  I know that he lives on, and being with him again is inviting.  I KNOW that life continues after death.  I know that God lives.  I've never doubted that knowledge for one moment of my life. 

Financial?  How is it possible to earn money when my weary body dominates my radiant spirit's ability to earn money.  I can barely contribute to our family dynamic.  If I die, well we can't afford to have me die.  There is no money for final expenses. 

I look at all of these fears and constraints.  Yet I am lifted by the love that has been shown to me with abundance since this newest attack of BIG C!  I let the love flow through me, around me, and I reach out in loving return.  That love, often considered abstract, feels very real to me.  I am grateful for all of that love.  I will use it as a great wind to lift my broken wings.  I will use it to carry me past hard, disease, cancer.