The Darkness Within

ms1 01-28-13 The Darkness Within.

I, I am poison, the enemy within
Death, hiding in life
A faceless adversary lurking in molecular darkness
I live in bone and flesh
I live in blood and cells
Stealing light, stealing laughter, stealing time
The most precious thing of all
I feed on toxins and chemicals
The food you eat, the air you breathe
I feed on innocence and purity
Young and old, weak and strong, beggars and kings
But even the strongest tremble when they hear my name
I am the ultimate mirror
I rip away the lies and the trivial worries
The burdens that don’t count, the arguments that didn’t matter
I leave you naked and weak
Viewing the world in a whole new light
Look me in the eye and know yourself for who you truly are
Human. Fragile. Mortal
In my arms mundane things becomes precious and precious things become irrelevant
I conquer my victims cell by cell
And those I touch live a different time
When every minute counts and every word matters
And every day above ground is a victory against me
But there is a way to freedom for those who would defeat me
A path through the darkness for the strong and the brave
A pound of flesh may buy your life
Or a draught of poison, to fight fire with fire
Be strong
When I have drained you
Be brave
When I have taken your courage
Be honest
When you want comforting lies
I am a dealer of death
But to some I give the gift of life, lived to the fullest
Those who defeat me learn the true value of time
And those stolen hours seem cast in gold
That wisdom, the enlightenment snatched from the grave
That wisdom is my only gift to you

© 2013 Morgan Sylvia. All rights reserved.
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Four Years, and counting ….

I considered celebrating this Anniversary with Cancer with a party and inviting all my relatives and friends that had been with me through all the ugliness.    I know people who do this type of celebration, and part of me would like to and I can respect why people do it.

But the more I planned for it, the more hesitant I became…..I felt that I was inviting the Devil to a dance.   I felt that in the ‘Celebration’ that I would be daring my fate and I just wasn’t ready to do that.

I don’t know why I am still alive, with the odds that they gave me.   My brother, the doctor, now tells me that I was stage 4 at diagnosis.   I will never forget all the sad faces after the surgery and the results of the biopsy.   I have known so many women this past year who have died, probably more deserving to live than me in many ways.

But, here I am.  Praising God every morning for this day He has given me.  Loving those around me.   Living every day, this present day, to do it well, to honor Him.

I am in love with nursing school, and everyone in the program around me.   I look at those around me, and just praise God that we are all there together.  I praise God when I meet our patient/clients, and again for my teachers.

My life is not perfect.   There are financial struggles, constant bills from hospitals – still years later; emotional struggles with people that I love that I thought I could depend on.   We do the best we can, one day at a time.   Every ache or pain, every one, I fear what it might mean physically for my body.   Yet most problems become quite trivial when looked at with the telescope called ‘Perspective’.

Many people might look at my life and see that I have no financial or economic stability, my marriage is struggling and my health is a big question mark; they may wonder how I make it through each day.   But I know that my God is greater than all of this, and though I love all of this daily life and turmoil, I love Him more.  And I give it to Him.

“Cancer victories are not won by personality types, but by a combination of doggedness (choosing the best physician, getting the right diagnosis and treatment), responsibility (doing your own research and taking care of your overall health), and plain old luck.”

http://www.nytimes.com/2012/12/12/booming/taking-on-cancer-again-this-time-with-the-wisdom-of-age.html?_r=0

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Inspiration

I started nursing school today.  I am in a good place… the Lord has brought me here.   It is so exciting to look at the young man next to me; we are both so excited to be here that we are vibrating.    Mike said to me, ” I have been waiting my whole life to be here.”   I laughed, I was thinking the same thing.

I haven’t shared with anyone there about my walk with cancer.   I’m not ready yet…and I don’t think they are either.

I do know that as I look back over the past few years and I recognize and honor the wonderful doctors that I had.   But the nurses…they saved my life.   When everyone around me was crying (including my doctor), my nurse Ana looked at me and said, “you are going to beat this.   You will be okay.”   she was with me for every surgery, all four, and when she stopped into the store this last summer, and I shared with her that I was going to nursing school and that she was my inspiration, she cried.

Ana, thank you.  You saved my life.  You believed in me.

 

“The minute you alter your perception of yourself and your future, both you and your future begin to change”   Marilee Zdenek

“Thank You Lord, that You have me in the place You want me just now….Thank You that I can safely commit my location and situation to You….Thank You that I can trust You with my future places.”    God is good.

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Insurance – the necessary evil. Part 1

Insurance….I haven’t mentioned it much.   This blog will take more than one, so it will have to come in parts.

There are so many bills from hospitals, doctors, labs… it is so confusing and so difficult to keep track of, let alone considering that you are on medication that is designed to numb the brain.   Most of the time, I would receive a summary first.    At the top in bold letters – THIS IS NOT A BILL    This summary would get sent to the insurance company which would usually deny all or part or most of it.   Then the hospital or doctor or lab will begin sending you bills, actual bills …or not.

Because it was so confusing, I saved everything.    Well, everything that I thought I should save, which is most everything.    There were moments of lucidity, when I felt brave enough to tackle this growing stack of bills.    I would find the THIS IS NOT A BILL and attach it to the insurance denial of reimbursement.    In a certain mood, it is actually quite amusing.

In August 2009 I felt clear headed enough to balance the checkbook – of which it is embarrassing to admit that hadn’t been done for months and months.   At the time, we were fortunate to have enough ‘cushion’ that it wasn’t critical. (of course that has all changed due to the 2009 depression and our business and medical problems).

But back to August.   I was confused, because I could see that my insurance company, Assurant Health was automatically debiting my monthly payments – not once, but twice and for different amounts.   My husband and I had an individual family policy – we hadn’t had insurance through an employer for over 10 years.

So I called them.    The lady on the phone was shocked and had no explanation.  Looking back through my records, I could see that in April 2009 – in the midst of my chemo treatments – Assurant Health had issued me a new policy.   Everything was the same, everything was the same….except for the policy number and the amount due.   So, instead of cancelling and reissuing, I had two policies.   Great.

They promptly cancelled one and refunded me the money.   Now, my son-in-law accuses me of being a conspiracy theorist, of which I deny.   But, in this instance, I am guilty and do believe it was deliberate.   If I had missed a payment – bingo bongo, they would have cancelled my policy.    There are many instances of insurance companies cancelling policies on breast cancer patients, too many to count, but the horrors came to light during the health care debate.

So, what was even more inane, is that now all my hospitals, doctors and labs were being denied because “I” had cancelled the policy.   Here we are almost four years later, and there are still unresolved bills out there, of which I only recently learned of.

I have a primary care physician that is currently researching the true costs of healthcare. I have given him all of my records of bills from insurance and providers – there are over 137, and I may not have all of them, I am now learning.   This man is educated and not doped up, and it has taken him weeks to sort through – and I had everything organized by date and gave him a timeline of my procedures.   On the telephone, discussing all the bills, he shared with me that he wished he had another patient like me that was as compulsive and meticulous, for comparison.   Hilarious.

His website is www.truecostofhealthcare.org

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Clinical Trials

When I first met my cancer doctor, Dr. G, he told me all about clinical trials and their great virtues.

Wikipedia explainsClinical trials are a set of procedures in medical research and drug development that are conducted to allow safety (or more specifically, information about adverse drug reactions and adverse effects of other treatments) and data to be collected for health interventions (e.g., drugs, diagnostics, devices, therapy protocols).”

In an earlier post, I mentioned a man – Mr. Johnson – who was in a clinical trial.   I had met him during a chemotherapy treatment.   His cancer had not responded to conventional treatments, so he had entered into a clinical trial and was hoping the therapy protocol would help.    He was so positive about it, explaining to me, that he really had to do this.  In the research trial, they don’t tell him what he is getting – could be a new medicine, or 50% or a placebo, but he may benefit and future cancer patients will benefit from what the research learns.

In the beginning, when uncertainty reigns about how your body will respond to treatment, the doctors want to keep this door open.    For me, the treatments worked, but after the mastectomy, fearing lymphedema, my doctor tried to enroll me into a clinical study that would have given me free care but I was not acceptable.    In my situation, I had chemotherapy first, then surgery, then radiation, and that order of treatment disallowed me from the study.    Each clinical study has different requirements to meet before you are accepted.    Fortunately, I haven’t gotten lymphedema.

This week I have finished a clinical trial regarding acupuncture and it’s benefits for the after effects of cancer treatment and to encourage sleep.   I had learned of it from Dr. Susan Love‘s foundation Army of Women.

I received 6 weeks of acupuncture – twice a week.    I had to wear an activity watch – it monitored my sleep and activity.   I had to give blood and saliva samples and take some computerized tests.   And then, they paid me.

so, the trick is that the acupuncture may be authentic, or it may be sham.    I haven’t figured out how sham acupuncture would work and they can’t say, of course.   It certainly felt real to me.    We were asked if we thought it was real and I said I was 95% certain I received the real acupuncture.

My aches and pains are gone – I mean gone.   I am sleeping better, because the pain in my hip and back aren’t waking me up anymore.   It is amazing.    I am more focused and reflective and better attention, less forgetful (probably due to the sleep).   I won’t find out until the study is over whether I had the real or sham – I will share what I learn.

My Doctor would be so proud of me.

 

National Cancer Institute Clinical Trials

Army of Women

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Hope doesn’t walk alone…

A friend of mine is in his second year of active cancer treatment; he left his wife of 25 years a few months ago.   She is bewildered.  Not certain where he is staying, he has told her three different stories.   Relationships are complicated.

In my friend’s situation, she is getting by, though she doesn’t know how.  And he is hurting, in pain physically and emotionally.  This cancer, it tries to consume the patient, but it also tries to destroy the family and loved ones, and too often succeeds.

It is a wild and often lonely ride, fighting the cancer beast.   A friend sent me this video last week and it hit me in my gut.   The Wildest Ride on Earth

I have heard of cancer patients blaming  spouses for their illness.  I also know of a man who killed his girlfriend in the midst of her breast cancer treatment and not an accidental overdose.

The last night my father was mobile, before he fell into coma from battling lymphoma, the nurses caught him trying to pack up and leave; he had been hospitalized for over two months and he just wanted to go home.   They restrained him and medicated him.    We all came as quickly as possible, my mom and brothers and sisters and I, fearing the worst.   We were told he may only survive another 24 hours, but he lived for three days, and we surrounded his bedside the entire time, telling stories and laughing and crying.   On Sunday afternoon, surrounded by love and Light and laughter, my father stopped breathing.  It was so beautiful.

And I remember what  Christopher Reeve said, “Once you choose hope, anything is possible.”

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Surviving…and thriving

Two years, 5 months and 15 days out of active treatment.    Three years, 2 months and 25 days from diagnosis….Every Day Counts.  Every day I think, make it count.

And I am healthy…so very healthy that my oncologist asks me what am I doing….whatever it is keep doing it.   I am now on a 4 month leash, I only have to see him every 4 months.    Keeping the tiger in the closet….(imagine a tiger living in your home, we have cornered this one into a closet and hoping to keep him there).

so what am I doing?

I exercise….I swim, walk and ride my bike.   I eat healthy.   I take care of myself.

I am back in college, hoping to earn my degree.   I applied for nursing school, I will find out in May.  I love school and I love learning.

We now have 4 grandchildren, Michelle and Matt have three – Lincoln, Stella, and Jack; and Kirsten and Andy have baby Isla Eden, born late December last year.    Lincoln starts preschool tomorrow – new adventures.

We sold our barbecue company – Mark continues to work for them and is in Thailand most of the time.   Not perfect, but he has a job and the company is growing forward.

Silk Road continues to grow.    We added local artists’ work to the fair trade products, and this year we have added yarn and knitting classes.   We continue to evolve and grow.    Here is the website  www.silkroadalameda.com    and our facebook page is https://www.facebook.com/marcopolosilkroad

I try to live in the moment with my Master, the Hope of Glory.

I feed the birds.

One of my biggest problems is my lemon tree, that is so productive I can’t give the lemons away fast enough.    So I have begun to make Meyer Lemon Marmalade and it is incredible.    When life gives you lemons….make marmalade.

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