Cancer is Not Cancer; The Agony of being Dependent.

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This was written when I was still quite sick a number of months ago.  I was too low at the time it was written to post it.  I’ve decided to post it now.  I  share it to truth-speak about how painful cancer can be. Sharing what it was for me, as a way of being a voice for those who have not words to share.  This rant of sorts is not an attack on any one person, but a broad-brushed painting of the reality of what it is to be sick and dependant on others.

Cancer is not cancer. It’s not breast cancer or thyroid cancer. It’s strokes, heart attack activity that isn’t, doctors treating you like a hypochondriac while functioning slips away.  It’s skin that peels, clothes that don’t fit anymore, potassium levels so low that legs throb through the night.  It’s not recognizing yourself in the mirror.  Foggy mind half the time not remembering what I’ve said, what you’ve said, what we were talking about.  It’s family sweet as can be, and condescending sometimes too.  It’s having to listen to people “Oh you look like you’re feeling better” while the entire left side of body is numbed out, can’t hear from the left ear, do laundry for five minutes before having chest pain and doctor saying “you’re heart is in great shape”.  It’s your little six year old daughter telling you that you get first place for being the meanest one in the family.  The mean mom that gets tired of the denigrating remarks when trying to get kids to do their chores, one by one the entire family decides they are going to be sicker than Mom today – until their pals come over and off they race across the yard, Nerf and laser guns a-blazing, and once again, when they return to the house, asked to pick up coat, or feed the dog, the sudden illness takes over and death is at the door. 

It’s the doctors passing their job off to another doctor.  Oh it’s the endocrinologists job, no the oncologists job, no the primary care, … .on it goes, while the mystery symptoms that take away my ability to take walks, swim, drive, to care for my kids get worse.  The computerized diagnosis is last word, with physical problems all hovering in the “rare” category, no one bothering to dig deeper while symptoms hold me in place, so much piling up around me, and I must be still. 

Cancer is having all the kind persons who have pitched in to help become judgmental of the way my life looks, judgmental of what happens in this house, condescending of who I am.  It’s having to receive help from others who don’t respect me because they are incapable of helping and empathizing at the same time.  The most empathetic person is the world can flip a switch when doing another a good turn.  It’s watching them lose respect by the day – each and every act of kindness they provide decreases the peer to peer relationship – me having no alternative but to receive it. 

Cancer is not a surgery and missing body part.  It’s the loss, week by weakening week of clients, and eventually a career.  The destruction of a business.  The death of a dream.  It’s not rosy and romantic.  It’s ugly – creepy … the stopper of life.  And I’m stuck between.  Alive and not at all.  Stuck receiving support, care, favors, errands, driving kids to school, with bitterness in the doer, irritation of the helper, and shame at being the taker. 

The part of cancer I can do quite well is walk into the hell hole of the chopping block.  I can tolerate physical pain.  I can usually manage being mangled.  I can’t handle the shame I feel receiving assistance – the baring all – the inside scoop on our junk, irritably of the one doing all the favors due to their superiority and my shame. 

Cancer could be the most ideal way to go if it weren’t for all that.  Known outcomes, time frames, managed symptoms until death.  What makes it awful is loss of dignity (relationship) with people I care about most due to my neediness at the end, and their inability to give and maintain respect for the person they are giving to.  A few of us can give without shaming – most of the time, a few can receive without feeling the shame, but most can not.  We call it being “stewards” of our time and money by nosing into others lives when a need arises.  ‘If she hadn’t let herself go, he’d have never looked elsewhere.”  “There are consequences to slacking on the job”.  “Live and learn”.  We have all said things like this – or thought them.  It’s obvious it’s wrong to give cash to a meth addict.  We take this reasoning further and do harm – judge – while extending a helping hand.  I tell you from the receiving end, it helps more to not help but maintain a relationship of respect then to help with judgment.

Most of us have ZERO BUSINESS being involved in another’s crisis, because crisis is a HOLY PLACE.  It’s where God hovers.  It is SACRED.  Anytime we have all the answers, we do harm.  Anytime we can’t give without judgment, we harm.  Anytime we get inside the disaster of each other’s life and can’t set judgment aside, we hurt each other.  I’m getting to feel it, first hand.  No one means to harm.  They just want the system to work better.  Just want routines in place that make things better, but that’s not how it feels to the one is on the receiving end.  If I ever get beyond this cancer mess, I vow to God and to others that I will NEVER HELP SOMEONE UNLESS I CAN HAVE A SOLID CHECK ON MY ATTITUDE. 

Do I resent helping my kids with things they need help with? 

How does that make them feel? 

Do I resent making supper. 

Giving a gift and resenting the giving DOES HARM. 

Do I resent helping a friend, I HAVE ZERO BUSINESS HELPING UNLESS I CAN HELP FROM A PLACE OF EMPATHY. 

Cancer is not cancer. 

Cancer is everything else – but one thing. 

Cancer is not Boss, God is. 

God is the only one out there I know what manages disasters and love all at the same time. 

If i’m well enough to work again, I’m working for Him.

What Race are the Kindest of Doctors?

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I had a doctor once, slight of stature, brown kind eyes, practical wash and wear hair, nothing fancy about her, and the one who sifted through mountains of charts – two separate charts belonging to one giant medical system.  One chart spelled with an “e”, the other spelled correctly without.  Both charts mine – and she found them.  Bent over her desk.  Diligent she was. 

Discovered, out of dozens of notes that I have 2 MTHFR gene mutations.  This information was not found where one might expect.  She found it anyway, because she worked on my case.   From this information she realized I must not take Tamoxifen, a medicine used for breast cancer patients who are found to be estrogen positive.  A medicine that can cause a stroke for those with my gene mutation.  She suggested I not take it.  Diligent hunt.  Diligent follow-through. 

I had 6 miscarriages before the gene mutation was looked for and identified. 

The gene mutation that caused the miscarriages. 

A number of doctors did not check, though they knew my history.

One did. 

Brown kind eyes he had, too.

Found it. 

Treated it. 

And Butterfly was born perfect and alive.

“Miscarriages are not unusual. 

They are nature’s way of discarding what is flawed”

say lazy doctors everywhere,

brown and blue eyed alike. 

Those doctors who do not see the value in learning the cause of a problem

before using one-liner’s to shush up the likes of me.

My PCP, always respectful of me, when I mentioned how heavy my sheets felt on my neck at night while laying on my back, immediately stepped out of the tiny examining room, hurried down the hall and ordered an ultrasound.  There it was, thyroid cancer. My endocrinologist who hand checked my neck each and every visit paid no attention when I told him the same story.  One doctor listened. On doctor didn’t.  Taking little stock in what the person that lives inside the body might know about herself.

After the thyroid cancer diagnosis, my husband and I asked my oncologist if thyroid cancer might have been related to the breast cancer I had months before.  She said “no”.  The next visit, the same oncologist brought in research showing us she had been wrong.  Said that it very well might have been related. 

She didn’t have to tell. 

Didn’t have to admit she had been wrong. 

There are doctors who are sloppy, lazy, don’t read the fine print. 

Make mistakes because they don’t listen,

don’t trust,

don’t respect. 

And then there are the doctor’s who do.

Thank God for the gene testing doctor’s of the world.

Doctor’s who don’t take it upon themselves to social engineer other people’s lives. 

Doctor’s who don’t minimize another person’s need when it causes them inconvenience.

For doctor’s that hunt and read and listen. 

The doctor’s who set aside ego, and act accordingly.   

I am alive because of some good ‘work hard for another’s sake’ sort-of doctor’s.

Women,

Men,

Asian,

Puerto Rican,

Jewish

Irish,

Tibetan,

Middle Eastern,

African American,

German,

a mix of them all. 

Each of these good doctors have more in common with each other than language and country of origin.  Hard-working kindness is a culture of it’s own.  A race of kind hearts, and kind eyes. 

I look to a day when people will not be judged by the color of their skin,

but by the content of their character.

Dr. Martin Luther King Jr.

You’re Gone

DSC_0153Breast Cancer killed you.  It took and done way with you, my friend.  Tore your life away.  Now you’re gone.  We were both getting well to run a ridge together on some grand mountaintop.  Now we can’t. I can’t even believe it.  You’re gone.  You died this morning “quietly in her sleep”.  Quietly.  Right. That’s what happens when your very breath is choked out, your brain is eaten, you just die and I HATE IT.  I’m so so so sorry Wendy, that they couldn’t heal you.  Wonder why God said no.  So sick and angry that your life is gone.  I want you back.  Want to fb you once again.  Call you on the phone.  Want to get off my lazy ass and get an airplane ticket and fly out to your Ohio farm and hold your hand and command you “Get Up in Jesus Name” but I had my fears, was too lazy and I didn’t and you are nowhere to be found as you have died, and have been taken away, and are no more and I ache with Leif who is alone now, and for your beautiful daughters who had to watch cancer show its menacing teeth, ripping tearing at you until you disappeared but for ash and earth and a stone overhead.  I HATE CANCER.  You were alive, an active God fearing beautiful woman.  Another beautiful woman fighting thyroid cancer also young died few weeks ago.  I’ve been holding on by strands, and feel I’m slipping away with the rest of you have who have been taken.  You had breast cancer, she had thyroid cancer.  I’ve had both.  How am I to fare?  I needed you both to make it, and you didn’t.  Your families, they have their reasons to need you to live.  I have my own.  I want to live.  Why will I live when you don’t?  I can’t breathe.  Something on my chest.  And I gasp, while you stopped gasping.  And the fear overtakes.  A non-pretty blog for the ripping, tearing torment of a thing called cancer death.

Faded PJ’s

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This morning, through dawn light, sitting in the stillness of my early hour house, eyes yet to focus, I glance along the edging of my soft blue pajamas and I feel a smile creeping now.  Sleepy smile, I feel it spread about my heart and down into my bones.  The fade of pajamas blue hover about me all the day, and I whisper good things under my breath.  Hope that this newest pair of already faded pajamas will become faded, no, just straight ratty.  That they will grow very old until they are ribbons of happy nothing. 

Crisp new pajamas.  I’ve grown to not like them much.  They come to me to be placed in suitcase packed for a hospital every time.  Some of the hospital visits are beautiful.  Baby boy brought home, precious and perfect.  Pajamas that didn’t fit me before, and body too much a mess to wear after.  That pair stayed nice for years. To the hospital for another baby, this time, a perfect tiny daughter.  I’d not remembered to think of pajamas for me. She had arrived before I’d expected, a month early.  Hadn’t packed a thing.  Other than things for her.  Her cotton pink footie-pajamas were washed, folded, held close against my cheek, folded again.  Ready months before.  My friend had thought of me when I had forgotten.  She brought to the hospital a lovely nightgown of soft pink and white, smocked and pleated, buttons down front.  I loved that nightgown.  I wore it year after year.  Don’t remember whatever became of it.  I’m guessing it was loved into shreds and threads as I rocked and fed, made a lap for two babies, a lap for reading and holding and spit up and …. Another baby years later.  And another. Pajamas packed and used until they were no more. 

As of late, pajamas for the suitcase bound for harder hospital stays.  Visits of cuts and drains, blood draws, parts removed, another cancer, another procedure, another and another. 

New pajamas. 

No thank you. 

I want to see how long the fade will keep on fading. 

Will the blue of light seem more white than blue?  I’m hoping so.  I could buy new ones for no particular reason.  And then I wouldn’t be needing another special book for my son on how to build something from nothing.  I wouldn’t be needing running shoes for me, or another hydrangea for my gardener girl, wouldn’t need to save for a night out with my best friend. I’d be too cut off from life to be buying sheet of music to practice with my girls.  I’d be winding down to dead, and I don’t want that. 

I really love how faded these pajamas have gotten.  Their worn down look speaks to how long it’s been since I’ve made a visit to the chopping block.  Long enough to make new fabric old.  Long enough to grow some strength on the legs that wear these pajama pants.  Fabric fades faster than it use to, I think.  Or my machine has more gusto than it use to.  In any case, time has passed without another reason for new pajamas, and I’m hoping my healthy full life thins them down to nothing at all.  I’m hoping.    

Weight Loss

Summer and Fall 2013 179
The writer and butterfly.

I use to be who I am now

Fat and covered in cellulite

Always hiding sloppy me

I didn’t the match the girl inside

And as I prayed and struggled on

Appeared, one day, just what to do

A friend I’d make

The one I hate

And over time

The change it came

Inch by inch

and

Size by size

I finally matched the girl inside

The years went by

most all was well

And then a cancer came to tare

And ripped the breast from off my chest

And choked my trust

And froze my bounce

And once again the hiding came

I didn’t match the girl inside

And still I prayed and struggled on

Appeared one day just what to do

A friend I’d make

The one I hate

And over time

The change it came

I grew to love

the one breast me

18 months of

all is well

And then a cancer came again

This time to claim

my thyroid gland

And spill around throughout my nodes

And throw my body balance off

I use to be who I am now

Fat and covered in cellulite

And now I know just what to do

A friend I’ll make

The one I hate

And over time

The change it comes

I grow to love

the one breast girl

fat and covered in cellulite

And as I friend away the shame

The outside me

it starts to

match

the girl I’ve always been

Not Knowing

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Today a friend commented after having told her how I’m doing, “So, no changes,huh?” That is so depressing to me. At the moment, I’m setting up a counseling business because the last office I set up made me no money in 6 months. Will this one be a waste of time too, although I have a book keeper now trying to help me keep paperwork straight? As we speak, we are packing up a daughter for college. We are preparing to put the younger two in school, we are asked to decided whether we want to move to Salt Lake now, or in January, or Charleston now or later or stay here. As for staying here, we are told we can’t refinance unless we raise our house payments by a TON, and that our house has to be finished, which we haven’t been able to manage yet. Dealing with Adored Husband mentally teetering on the brink of crazy and genius as he always does when he’s inventing – the thing he does for a living.

…they that wait upon the Lord WILL renew their strength…

I’m told to keep moving forward. To act as if I’m going to put the kids in local school. As if I will have a dozen paying clients in my new office in a week, moving forward.. not knowing – yet moving forward. I don’t do that well, which means I’m not doing well. Last year – today – I had a breast removed in an effort to keep cancer from spreading through me. That was the day I wondered if the cancer was taking me or moving on. I had to adjust to one on, one off. The crisis gone, why does life feel so off and so hard and so confusing? I don’t know. All I know is that I love to see my kids learn and grow. I love to work with clients, even when I’m not getting paid. I love my friends in WA, and my house. I love the mountains in Salt Lake, and the sunshine. I don’t love anything about Charleston because it’s too far from my kids… but if I was forced to, I’d learn to love life there as well. I love my guy, always curious about life  – despite his swings. And so I toss the stress back at God…. and move forward, not knowing.  Teetering forward, haltingly forward, hoping as I move along that God will direct these stressed out steps of not knowing.

Holy Underthings

The drive to Nordstroms to meet with the plastic part fitter, I’m a mess.  Want to go alone, but find no way of doing so.  Butterfly is along, chatting happily from back seat, asking me random questions.  “What are we doing after we go to the mall, Mom?  Are we going back home?  Is Sis going to be home by then?”  Our college beauty-girl is coming home for Christmas break.  I meet her at the airport tonight.  She hasn’t been home in months, and the house is all a buzz. The kids and I put everything together just right, but day before college beauty-girl arrives I fall apart and cry the entire day.  I have put off getting a prosthetic four months now.  I want more than anything to have a Merry Christmas with our kids.  I’m so lousy at faking.

Grey drizzle, wipers going, butterfly and I make our way down the interstate corridor.  We play Christmas Music.  It’s hard singing with a throat lump.  She is still chattering as we make our way out of car, Butterfly and I.  We are in the store, weaving through the bustle of the season, the escalator up, up toward sparkling Christmas trees.

Another bit of a walk and we are in the lingerie department.  There’s a line.  I wait behind one beautiful lady after another.  I think I’m the only one here today not buying lace and satin because I’m lovely enough to show off for my man.  I hate the gouge in my chest, numb and not belonging.  No matter how much Adored Husband tells me every day he finds me beautiful, I feel like trash. Butterfly’s warm hand swings mine.

“May I help you” says another gorgeous lady.  “I have an appointment” I say.  She rushes to the back room and in time Kind Eyes greet me.  “Hi” She takes my hand, tells me her name.  She smiles and talks to Butterfly.  We walk past the panties and satin gowns, down a narrow hall of mirrored doors, walls papered in flowers, soft carpet.  Christmas tunes playing as key unlocks room at end to the right.  We pass through the door. In the fitting room there are the preliminaries.  The measures.  The questions.  Cat rarely gets my tongue.  I can’t find much to say.  Slow at answering Kind Eyes questions.

I sit there in a fluffy overly turquoise robe and wait a while longer as she rushes away only to return with the loveliest girlie things I’ve seen in a long time.  Beautiful things.  Things I had thought would never be part of my life again.  The prosthetic is completely hidden.  I can’t stop looking.  I look like me.  I feel the shock.  It warms me.  I turn to look at her.  She’s busy loosening each, one by one, from their hangers.  Even the hangers are pretty.  Somehow industrial undergarments are all I can imagine will hold a prosthetic.  These are nothing of the kind.  No-one can ever tell from sight I’m missing a breast, that I’m wearing an engineered pillow that fits in a pocket.

This lady probably doesn’t know it, but she works for God.  Her calling is holy.  I think of the designers of these bras.  They must be God’s agents, too.  The engineers who make the best prosthetic they can, thinking of everything from comfort to heat transfer – ministers, all of them.

The song playing overhead  “… till He appeared and the soul felt its worth.”  I leave the holy place of lingerie, Butterfly and I.  We weave past the sparkling Christmas trees, down the escalator and out into the grey.  “…a thrill of hope, the weary world rejoices, la, la, de, daah….”