The Whole Dying thing....

The whole dying thing is so trippy.   It's a real game changer when you finally absorb the fact,  with absolute certainty that it's not just something that will happen to 'somebody else'.  As silly as this sounds, there is a level of understanding that comes to the elderly....and the terminally ill.  It's a different level of understanding.  It's real.
In that moment in time when the full reality of death came to me, my body shook for hours, uncontrollably.   It was raw horror.  Some time later I reviewed my memory of this day in my life.  I was somewhat shocked to realize how emotionally divorced from the reality of death I had been.  That was 11 years ago.  The horror dissolved into a calm acceptance.   I am no longer  afraid.

 That day  was the beginning of what I now think of  as my "real life".   Everything before that moment now seems like a dress rehearsal.  It was only in my full embracing of the temporary nature of my existence  that I found the full value of my life.
I could write a book on all the ways in which perspective, priorities, my life has changed since that day.  I won't do that.   I will   just make note of it here.  Everyone will understand eventually....even if only for a brief moment before their own death.   It is an incredible experience and it leads to an end of so much of what we run from and fear.

Yikes! I did it!

Off treatment for 3 days , back on treatment 3 days.........and sick again  :(
It's become abundantly clear to me that I must either give up treatment or give up my job.  I've gutted it out as long as I can.  The time has come.  Today I resigned from my job.  My last day of employment on will be Aug 18th.  The nausea and fatigue have at last overwhelmed me and forced my hand.  I'm choosing LIFE.  I'm choosing to continue the fight.  I don't have the energy to both fight and work, so I willl fight.
I came home today  and had a good cry on Bill's shoulder after turning in my resig.   I've loved my job and the tremendous satisfaction it's given me over the past dozen years.  I love my co-workers and will most certainly miss their company.   I also love my life and I know that I do not get sufficient rest for someone fighting a disease like cancer.
And at this moment my husband is happy as can be that I have FINALLY agreed to relax and take better care of myself.

The dust is beginning to settle on this  and I'm growing more and more confident that I've chosen right.  I'm exhausted!

Belly aches and Heart aches

It's been one of those bellyache days.  I've spent most of the day in my recliner reading, meditating, studying & thinking.  Physical movement turns ache to nausea, so here I sit.  It's not so bad.  It's just not how I planned on spending my day.
I've reached the midway point of my "online retreat"  with Pema Chodron.  I'm loving it.  I do wish that I could have spent this time with a bit more solitude.  My life is exactly what I've made it...busy!!  So, I am catching my quiet moments as I can.

My heart leaps with joy at the recent Supreme Court decision to allow our gay community the joy of marriage.  It's a time of celebration for all the members of the community as well as for people like myself who care passionately about human rights.  I wish you Peace, Love and Happiness my gay friends.

But there is heart ache as well.  I feel a stab of pain in my heart each time the opposition throws a spear at the gay community, out of their misguided sense of moral superiority. I hurt when I see the FB postings that are clearly so judgemental.   I cringe to think of the pain that is and has been laid upon the homosexual community because some can not resist the temptation to project their own self loathing  upon  an entire sector of our society.  Why???  What purpose has it served, other than to hurt people?  When has hurting other human beings ever been anything but wrong?   How is this justified in the twisted reasoning of the perpetrators?  What kind of selfishness demands happiness for themselves, yet denies it to others?

At the end of the day, however, I am encouraged.  We have made another leap forward in the area of human rights.  Those who have sought to oppress have suffered another defeat.
God Bless America

Carry Me

Carry me, Sweet Death
into the presence of all I have loved.

Carry me to the rural fields of my youth
that I might drink, one last time,
the aroma of the earth
And sense the wind on my soul.

Carry me, Sweet Death
To each lesson I've learned,
It's cost to my loved ones
and it's enduring value.

Carry me to the places
of my children's birth.
Let me hold their little hands
and know that it has  been good.

Carry me, Sweet Death,
to each place of Peace
discovered and cherished
and let me remember for Eternity

JPJOHNS 4/3/15

One day at a time

I am into my 2nd week on my new drug, Votrient.  I became Ill on the evening of day 4 with extreme nausea and a nagging sick headache.   The following day I woke up with the strangest pain.  Ribs 8 & 10 (which I fractured last year, were aching in an odd sort of way.  Additionally  my left shoulder, the sight of my first met 11 years ago, was also aching.   My right femur,  the 10 inch scar from my nephectomy, as well as a dull ache in my flank...all tender and/or aching.  Lastly my scalp, every inch of it felt  tender to the touch.   I have vowed not to resort to pain medication until absolutely  necessary.  On Tuesday morning I broke.  I asked my Oncologist for a pain med script.  It got me through  the night comfortably.  24 hours later most of the pain was gone.   Today, Thursday, I'm fighting a profound fatigue.  Pain is minimal  and nausea  is mild and brief.  I have not returned to work.  I plan to resume my work schedule next Monday.  
The above is the extent of my side effects so far.  I am in pretty good spirits.   I find myself now yearning for Spring.  I'm longing for some sunshine on my face and the golf course.  I'm feeling optimistic  for now, hopeful of a good response to the Votrient.  The side effects have been manageable.....more  so than the S.E.s of Nexavar.   I'm glad to have the nexavar part of my life behind me.  It was hard. This is all for now....taking it one day at a time,

About Mom and the ending of life

I recall the exact moment when Mom chose to stop fighting her debilitating disease.   There had been a big family reunion, more elaborate than previous years.   It was a wonderful success and most certainly the fulfillment of one of Mom's wishes.    As the last car pull away afterwards, I watched her close her eyes and drop her chin to her chest for a moment of reflection.  I sat quietly with her, careful not to disturb.   When she raised her head I saw something different in her eyes.  The fear and exhaustion I had grown accustomed to seeing over the past year was replaced with a look of resignation and peace.   Even though I understood perfectly well what it meant, I found it a relief.  That reunion was her good bye to her family.  It was a wonderful goodbye.  It made her happy.
The biggest surprise at this time is that my father understood as well.  I had never thought him to be particularly in tune with, or observant of Mom's emotional needs.  I have to say that he came through for her when it meant the most.   He redeemed himself in my eyes (and perhaps hers as well) in that moment of clarity when he understood.
Mom lived another 3 months after this day.  These were high quality months in terms of our relationship.  I learned things about her that I did not know about her.  I'm left to wonder if this was because she had become more willing to share her inner self or whether I had at last gained enough maturity to listen in a way that she needed me to listened.  That remains an unanswered question.  It was during these final months that I learned how deep Mom's faith in God was.  It was most certainly a comfort to her at the end of her life.  I find comfort in knowing that she was at peace as the end drew near for her.  I hope I can leave this life with the same degree of peace and dignity.

A bump in the road.

I suppose that an update is in order now that my scan results are complete.  Of greatest concern is a mass in my pelvic area, more specifically my psoas muscle.   My oncologist has also expressed concerned about growing lung nodules.  I'm questioning his accuracy on this, at the moment.
Obviously the Nexavar is not effective on muscle based tumors.  It's time for a new drug and a new approach. On Monday my new drug, Votrient will be available to me.   First dose will be bedtime Monday night.  The side affects appear to be quite similar to Nexavar.  Ill soon find out if that is the case for me.
Emotionally, I am doing reasonably ok.  It's another bump in the road, but I'm still full of fight.  I will battle the beast with as much enthusiasm as I have in the past.
Lastly I need to comment on the impact that cancer has had on my relationships.  In observing people's reactions to my illness, I have learned a lot about the quality of my relationships with them.  There is a fairly long list of individuals who messaged me after scans inquiring about results.   There are some who have yet to indicate any interest.  My kids rallied around me and lifted me up during the time of shock after receiving awful news.  There are others whom I counted on in the past who are conspicuously absent.  And it's fine.  I'm afraid I've been oh so guilty in the past of asking more of certain people than they really wished to give.  Somehow I have managed to grow enough personally that I'm no longer experiencing pain or disappointment over these things.  It is what it is and people are who they are.  I have come to accept the death of these relationships.  I am at peace.
As I am still reeling a wee bit, emotionally, this blog entry may reflect that some.  More later, after the dust settles.

The Lessons of Cancer

The human mind can make peace with anything, even the ending of one's life.  The initial terror at diagnosis fades to nothingness, replaced by a quiet, almost comforting acceptance of this fact of life.  It ends, for all of us.

Our material possession have NO value beyond their functional purpose during life.  A home has no value beyond it's function of shelter.  Time invested in acquiring a bigger, better whatever is time squandered. The only things of any value are the people we share are lives with, the joy and tears, the experiences of our lives and their lessons.  It is a fool who invests their time in acquiring more material items.  It is a fool who puffs out their chest in pride over these things. These things are meaningless.

There will be some who abandon you after diagnosis.  It's a reflection of their own fears and shortcomings.  Forgive them and move on.  They are no longer meant to have a place in your life.  Do not waste precious time mourning the loss them from your life.

Live today.  It is all there is.  Wake up each day determined to fill it with something of value.   My happiness and satisfaction in life increased tenfold after diagnosis because I learned the lesson of "today".  Wake up every day with an expectation of joy.  Joy comes easily when it's allowed.  It takes a simple leap of faith and a belief that life is about joy.

Everything we need for that last journey, the experience of death is already within us.  We need not go chasing after a new church, a more enlightened spiritual leader or some book that we believe may hold the answers to life's biggest mystery.  We hold it within us already.  The answers is ours if we have the courage to look.

Those awful times

What do I do with those awful times when it doesn't seem worth it? I get so tired of feeling awful.  Never ever is my stomach completely at peace.  There are days when the war makes me weary and so low on determination and will.    Sometimes I envy those warriors who have already passed.  They are free of the burden of a sick body.
10 + years I having doing this.  I'm tired of the fight today.  An accounting of my journey would  be a lie if I didn't admit to the experience of despair from time to time.   This is the part that nearly everyone chooses to invalidate, ignore or to try to convince me I am not entitled to experience.   I am alone on these day because people can't seem to bear the truth of my reality.  It's ugly alright, but it is as real as the experience of good days.  
For the most part I believe we are culturally messed up on the subject of death.  How many die alone because those closest to them can't handle the "hard parts"?