New Beginnings

It's been awhile since I blogged.  I've been feeling well and life is busy.  I have booked up every week end in July and into August as well.  I'm making up for 3 lost summers.   Those were summers that I was struggling to survive and not really living.  '
I'm fat.  The injury, surgeries, cancer drugs etc. etc.  After three years of not being able to work out property or even engage in life in any sort of real way I am left with too much fat, not enough energy and a bit of a road ahead of me to get back my "pizzazz".
On July 4th I joined Weight Watchers.  I have fitness goals, in addition to weight loss goals.  33 pounds.  Cancer has taught me how to keep going in spite of how difficult it is, or how impossible it seems.  That 33 pounds is a foregone conclusion as far as I am concerned.  I'll succeed.  I expect it to take the better part of a year, however.  I have to do it safely, without compromising my treatment/immune systems.
Currently I am swimming 1 miles 5X a week and going on 2 bike rides per week.  A mile in the water feels like a long way.  I am a slow swimming.  It takes me an hour.  It does feel good though!  Bike rides?  Easy.

So, there is is.  New beginnings for me.   In a year I will edit  this blog post to include before and after pics.  

Havoc In My Head

I have been living with cancer for 12 years.   This past year was the worst.  It was the Black Hole in my life.  I seem to have come out the other side, intact and happy.  And Oh So filled with Gratitude.

Last September  things got ugly.  I began to have to odd sensation in my head.  I can only describe it as the feeling that the lower section of my brain was floating away.  I would lose focus, become dizzy and lose balance entirely.  Vertigo.....nausea.....suicidal thoughts.  I could not walk without help.  The first time it occurred I thought it was a stroke, or perhaps a tumor in my brain.  Bill asked if I wanted to go to the hospital and I told him I preferred to die at home.  (Yes, i did believe it was my last day on earth),  Eventually it subsided and I spent the night on the bathroom floor with blanket and pillow.
This scene was repeated dozens of times over the next  months.
I began to lose my hearing during this time.
I saw and ENT in addition to my oncologist.  Later I was referred to an audiologist.   Brain Cat Scans,  MRI.   No one could figure it out.
Meanwhile I began wishing for the end to come.  I wanted OUT.  I came to understand why people give up and choose to die.  Quality of life matters.  When you are unable to lift your head off the pillow or even open your eyes with out becoming nauseated, it is time to make a decision.  I was so there!
Then something wonderful happened.
March 6th I went in for my Cat Scan and Oncologist appt.   The tumor had grown.  The chemo wasn't working.
March 6th, the last day I took Votrient.  March 6th, the last day I felt my brain floating way, my legs giving out beneath me, and the extreme nausea that comes with vertigo.   The last time I swallowed those 4 pills was the last day that I thought I was dying. Damned Votrient was creating havoc in my head!!! Cancer drugs are serious business and side effects are not always predictable or easy to understand and identify as such.

I am on immuniotherapy now.  It worked for Jimmy Carter.  It can work for me.  And I feel GREAT.  I will scan on June 21.  I have high hopes.  In the meanwhile I am enjoying life....enjoying my grandkids...the rain, the sunshine and whatever else comes my way.  The Black Hole is behind me.  My hearing loss is most likely permanent.  I'll be followed by my audiologist for the next year.  No worries.  Hearing aids work great and I've got my life back.   And to all of those who chose to withhold  judgement while  I was struggling, my eternal gratitude.
This will be the best summer ever.

Facebook and other Confusion

I have shut down my facebook for now, or forever.  It can sometimes be a brutal environment.  On sick days, which have become all too frequent,  I am all too vulnerable.  Right now I surround myself  with those who understand the difficulty of this disease that I live with...

One More Day, a Warrior

It's been a dozen years, or so, since I began this journey with cancer.  I'm tired.
Every day  I wake up, I have to make the decision again. Do I keep trying?  It is the first decision of the day.  The answer  used to come  easily.  Of course I'll keep trying!   The alternative was considered briefly and then quickly discarded.  These day, however, surrender tempts me.  I am oh so tired of the fight.   The thought of surrender is beginning to feel like an act of accepting peace.  The thought has been sneaking up on me bit by bit for the past year. I think of closing my eyes and drifting off to that place where the struggle is over.
Today, I found some energy somewhere and went to the gym.    I spent 65 minutes on the treadmill,then I got into the swimming pool for some laps.   This is what a long term cancer warrior must do. Without maintaining my strength I may not survive the next  tumor, the next surgery or the next treatment.  It is not an option.  I get my tired old ass out of my chair and I work at being the best warrior that I can be to fight this shitty, impossible disease of mine.  
This is how I have survived 11 years beyond my original prognosis.   It's not magic.  It's hard frickin' work.  And....did I mention that I'm so very  tired of the fight?!!

I'll most likely get up tomorrow and do it again.  I'm not completely ready to toss in the towel.   When that day comes, though,  don't call me a quitter or accuse me  of giving up too easily.  When the day comes that I decide not to fight any longer,  rest  assured that I've given it a great deal of thought and that I am at peace with the decision.  I hope that everyone else will be at peace with it as well.

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