Silent Night

Penned in 1818, this is my all-time favorite Christmas carol. The Silent Night is a time to celebrate the birth of our Savior and a time to stop and take stock of our blessings.

As a child, it was a time for presents- evidenced by gifts left by Santa. As an adult, it is a time for reflection and remembrance of those who have left us and a time to honor those who remain central to our lives.

Those of us touched by cancer or chronic disease have a different perspective on life; it is unavoidable.

We mourn friends we’ve lost along our journey and we welcome new friends who walk beside us. We can’t afford to overthink everything; we must trust in others to move forward and sustain hope.

Hope is central to survival.

Little gestures take on great meaning and seemingly random events become puzzle pieces which slowly mesh to reveal something far bigger and brighter for the future.

I am thankful for my friends, new and old and my family and for all the kind words shared throughout this year.

I wish you all a Merry Christmas and many blessings in 2020!!

Just a few thoughts heading into Thanksgiving…

Some years back I read a book written by Bill Shore which profoundly influenced my thinking. The title is “The Cathedral Within: Transforming Your Life by Giving Something Back”. If you have not read it, I highly recommend it.

Although the book inspired me, life got in the way and, like every good procrastinator, I made half-hearted attempts at action.

I began writing this blog as a way of coping with a life changing cancer diagnosis- specifically I wanted to share my story to educate and inform others and share some personal experiences that shaped me and honor the people I love.

Said more simply, I wanted to do something positive in the service of others.

You know- leave the world a better place than I found it.

Along the way I discovered I needed a little work on my spirituality. More specifically, I wanted to be able to express its importance in sustaining me in my journey.

My writing has been interrupted by the effects of my treatment but as my mind has cleared, so have some of my thoughts and I want to share a few of them.

Recent events have moved me in a healing way- healing as in my spirit- I leave the physical issues to the doctors. I do as I’m told and go on about my life as best I can- I am what they label as “treatment compliant”- not sure why I find that amusing- but I do.

The most important thing I would like to share with everyone is this:

It is God’s timing as to when and how I leave this world- it was true on the day I was born and nothing changed on the day I learned I had incurable cancer.

It was always beyond my control and will remain so.

I work to keep my heart and mind open to a miracle while focusing on trying to help others in ways that I can.

I refuse to be consumed by my disease.

Almost daily I learn of friends and family of friends who are facing devastating illnesses and I have learned that by sharing our journeys and our fears we make each other stronger.

One thing has been made crystal clear to me over the last four plus years and it is that there are no coincidences- things happen and people enter our lives for a reason. We may not know the reason immediately but eventually it becomes clear.

I met an impressive young man, sitting on a porch, smoking cigars (yeah I know, no need for comment). Our conversation drifted to his occupation and, since I’m nosy by nature, I started asking questions.

He was clearly a man with a mission and had passion and conviction for his work.

Our connection was immediate.

He is the Executive Director of Freedom House, a Greensboro, NC based non-profit.

In a nutshell, Freedom House serves women who struggle with addiction and their children and it is Christian based.

The program is unique in its structure, their success rate far exceeds the norm.

If you follow my blog, you know I have struggled with addiction since I was a teen.

I know what broken, hopeless and helpless feels like.

Freedom House’s beliefs, mission and message align with mine better than I could ever hope for.

A light switched on in my heart and soul.

I was intrigued and have since met the founder and another leader in the organization, visited their new campus and offered to volunteer my time and financial support.

As long as they will have me, I’ve chosen a way to give back- to do my part in building the cathedral.

If you want to be inspired visit http://www.helpfreedomhouse.org and listen to Ann’s message.

I will be traveling on Thanksgiving for a check up but that’s OK, I have already had a wonderful Thanksgiving.

Who I Am Today

Not so long ago I swiped an Instagram post (my bad) without proper attribution so here it is:

The post was especially timely and meaningful to me.

Somehow I’ve managed to find my feet after each stage of my treatment but the recovery from my last chemo has proven challenging. Somewhere depression crept into my world and it has been a tough battle. My mind wouldn’t work properly.

I’ve mentioned the PM’s I receive and some of them are so beautifully written that I encourage the writers to be more public- I haven’t had the success I’d hoped for….. The messages are poignant, life affirming and show the wisdom we have earned.

God knows our world could use a huge dose of wisdom and plain old common sense.

I have reconnected with many college mates thru FB and this blog. Their messages are enlightening, kind and show deep thinking. I responded to a thoughtful and encouraging message from a friend the other day telling her that it is a shame it took a life changing event for me to find my feet, my voice and define how I really want to live.

To paraphrase something I heard recently:

“You are the person you are today, not the person that you were yesterday or any day in the past.”

To which I would add:

“Forgive yourself and remember that you have choices, new choices, every day- so choose wisely”.

The last few months, going thru chemo and trying to recover, have made it difficult for me to think clearly and to some extent, feel anything- high or low. Very frustrating. I survived by surrounding myself with the people I care about and focusing on doing  something to better other people’s lives.

This is who I am today.

My goals are very short term and specific.

As I enter a clinical trial for another phase of my cancer treatment, I am praying the cognitive issues will continue to resolve and I can get back to my life. I will follow the protocols and hope for the best but my goals have nothing to do with treatment, they have everything to do with survival to experience some very important milestones.

What you may not know about me is that in addition to my son, I have several other “children” who I love dearly and are very important to me- not actually children- but young adults. They are all experiencing milestones in their lives and I need to participate. One couple welcomed a son in June, another will welcome a son in a few days and my “Spirit Daughter” (she doesn’t like the label) will graduate college in December. My son continues to thrive in his career.

I have held Harry; I will hold William and I will see my “daughter” receive her diploma.

I could not feel more blessed than I do today!

 

 

Medical Update 10.26.19

I cleared the hurdles to get into the clinical trial and was randomized to the study group (I am receiving the new medicine).

Actually received the first treatment yesterday and, knock on wood, all is good today.

1 down, hopefully 5 to go!

Prayers answered, challenge accepted- here we go!

Update 9.14.19

As some of you know, the IV chemotherapy did not work for me and caused me a great deal of problems with side effects from which I have yet to fully recover. There is a second chemotherapy which is standard protocol and I have declined it- the cost in terms of quality of life doesn’t equal the possible benefit (at least for me).

I have signed up to participate in a clinical trial for PSMA therapy but there are several hurdles to get in and even if I get into the trial, there is a 1 in 3 chance I will not receive the medicine being studied (ie- get put in the control group).

Concurrently, I will have a lymph node biopsied to study the genetics of my cancer and determine if there might be another alternative.

I have been absent for a while because my brain was fogged but I’m improving slowly but surely.

Thank you all for the kind words and thoughts, I may not have acknowledged them but they are very meaningful to me.

Some Random Thoughts….

It is sickening to watch tragic events being politicized- these are humanitarian issues and know no politics.

The mass shooters are no different from the food lickers- guns and food are not the problem. The problems started long ago. There is underlying callous disregard for others which, I my humble opinion, is a result of the breakdown of our moral fabric at a most fundamental level- in the home, in our schools and in the media.

Why?

Where did it start?

Some of it is the result of unintended consequences (every kid needs a cell phone for safety reasons, right?) some of it is the breakdown of our sense of community.

It starts at home and at school in the environments where we raise our children. The media and entertainment industries are major contributors. Our kids are slowly desensitized to the graphic and sensational violence which dominates the news and the entertainment industries. It’s OK to shoot a bunch of people or blow them up because all you have to do is hit reset and the world returns to normal.

We’ve changed our parenting styles and habits. Good intentions- disastrous results. Only now are we learning the dangers of “screen time” and the far-reaching impact of social media. We took bullying off the playground and gave it a 24/7 forum in our children’s lives. There is a reason the leaders in the technology industry limit their children’s screen time and access to electronics.

We’ve taken discipline out of our schools and created a culture of disrespect. Listen to the lyrics in popular music.

We’ve erased references to God from our public places- references which might stimulate a discussion with a young mind. We may not share a common vision of God, but most cultures recognize something greater than the individual.

Who wants to hurt someone they don’t know? I’m sure the psychologists can answer better than I but it seems to me that these individuals feel isolated and powerless- invisible to the world.

We are so focused on trying to not to offend anyone that we are endangering everyone.

Update 6.14.19

First, I want to acknowledge and say “Thank You” for all of the kind messages and thoughts- public and private- I simply can’t express how life affirming and sustaining they are.

I have to call a few of you out…

Laila, one of my NYC treatment buddies (actually the wife and supporter of my friend Sam), checks on me most every day. To paraphrase one of her last messages, she told me to get off my behind and start writing- even if it isn’t perfect (read “any good”).

Lisa, my therapist and an active runner, suggested I get off my behind and start moving, no matter how far or fast or how much- just get going and get out of my head.

Stuart, my close friend and a competitive Cross-Fit athlete, sent a copy of the well-known poem:

Invictus

-William Ernest Henley – 1849-1903

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

The poem suggests too much credit for my efforts, but the message is consistent with the others- time to let go of my fears and apathy, get up and take control of what I am able.

I may not determine my fate, but I will captain my journey.

 

Where I’ve been…

For me to write, my emotions must be stirred to a high level. Love, laughter and feelings that evoke tears motivate me. Lately, I have been mired in apathy, anger and maybe depression. Not sure what depression looks like in me but not leaving the house, sleeping all the time and isolating myself from my friends certainly isn’t the healthiest approach.

My fear of this type of chemo (IV- taxane based therapy) and its side effects have come to fruition, perhaps of my own making, but the physical and mental toll is real. My memory, critical thinking ability and attention span are decimated for all but a few days of each 21-day cycle.

I’ve been whining and it’s time to stop.

I’ve lost friends to this disease and encountered many people fighting this disease and, to a person, they endure more than me by miles and miles. I admire our service men and women who have fought back from horrific injuries to reclaim control of their fate- I am grateful for their service, inspiration and example.

To underscore my point, I have a friend who has been fighting bravely for many years in surgery this morning who took time to message me encouragement from pre-op early this morning.

My dear, my prayers are with you! You have certainly been a role model for me.

 

Where I am….

I am currently undergoing an established taxane based (Docetaxel/Taxotere) intravenous chemotherapy designed to extend my life. Initially the plan was for 6 treatment cycles spaced 21 days apart. We have a tentative modified plan to extend it to 10 cycles.

As I have stated before, no two cancers are alike- so my treatment plan and results are unique to me.

My marker/progress indicator is my PSA (a simple blood test). The initial goal of this chemo was to knock it down by at least 50%. I exceeded the goal with my first two treatments. The third treatment yielded a very minor reduction and I am waiting on test results from yesterday (4th treatment).

 

Where I’m going…..

I have discussed and agreed with my Oncologist that if my PSA has plateaued, I will complete the 6 cycles as originally planned and decline to extend to 10 cycles. If my PSA is significantly lower, I will find the strength and courage to extend to 10 cycles. To extend with no apparent benefit has too much negative impact on my quality of life.

Fortunately, I am not out of options for disease management or out of the game for some of the emerging immunotherapies which are showing promise for metastatic prostate cancers which have shown resistance to standard protocols.

I’m ready to be done with this treatment phase, see my friends again, and plan my next adventures.

Liz and the lessons you left us…

Yesterday I lost a personal role model and inspiration to a rare cancer diagnosed about 5 years ago. A young man lost his mother, a mother lost a daughter and a wide circle of people lost a dear friend. Despite the overwhelming sadness, it is important to know she set an ambitious goal to see her son graduate high school. Her prognosis was very poor, yet she surpassed her goal by leaps and bounds in terms of her disease. Not only did she attend graduation but lived to help him settle into freshman year at college.

How?

Thru goal setting and a fierce, sheer will to succeed.

To succeed, and she did succeed, she endured 18 different chemo therapies, a 12-hour surgery, an 8-hour surgery, a third surgery as well as numerous other medical procedures, all with prolonged recovery periods and a smile on her face for all to see- there isn’t a single picture without her big smile.

In my heart and mind, I continue to be awed by her attitude, strength and determination.

Despite the sadness, her closest friends understand how difficult and trying her efforts. Liz will be sorely missed but live on as an example for everyone who crossed her path including her surgeons, medical providers, caregivers and friends.

Her ordeal confirmed a few truisms; we never really walk alone; life isn’t fair, and you play the cards you are dealt the best you can. Most importantly, setting goals is imperative and hope and faith are paramount.

The world lost an exceptional woman and, as the grieving process continues, her precious gifts will inspire me and everyone whose life she touched.

Liz, it may not feel like it to all of us now, but you won- you earned your freedom from this earthly suffering with grace and dignity, rest in peace. Thank you for showing us the way to live in the face of adversity.

Medical Update 3.31.19

I returned from Italy on 3/10, flew to NYC on 3/11 for tests and meeting with my oncologist and a nuclear medicine doc to begin radium therapy.

Unfortunately, the scans showed aggressive growth and, after consulting with the oncology group, I accepted the recommendation to start standard chemo.

I had my first treatment on March 21st. Unfortunately, my white blood cell count plummeted and I am stuck in the hospital for a few days.

Thanks for the calls, texts and messages- I just don’t have the energy to answer everyone.

Hopefully I am out of here soon!

The Road Not Taken

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

 

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

 

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

 

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

 

-Robert Frost

 

I discovered The Road Not Taken as a child, it resonated then as it does now, albeit differently. Young, cocky and bulletproof has yielded to reflection and gratitude for the opportunities afforded me. While I have regrets and doubts, I have never chosen to live a life of regret and doubt and I am not about to start. Regret and doubt are a waste of time and energy- time and energy which becomes more precious every day, time and energy I can ill afford to squander.

Did my choices lead me down a more challenging path?

Maybe.

The paths we choose are written in the lines on our faces. If my foibles help guide others in their decisions, I’m good with it.

Have I had it easier than some?

Definitely.

I can’t claim to have been disadvantaged in any way but I’m proud of what I have worked to accomplish. I’m not rich or famous but I have made tremendous positive impact on a lot of lives.

Do I wish my life had been different?

Nope.

Material things don’t interest me, experiences captivate me. Pleasant or unpleasant every experience is an opportunity to learn and grow as a person.

Can I make better choices moving forward?

Yep.

I pay close attention to the impact of my actions, on how I greet people and who I spend my time with. I have a passion to see people thrive- especially young people.

Can I win this fight?

I hope so.

I pray for a miracle every night and not just for me, for everyone who is part of my life- past, present and future. All of us have challenges that others know nothing about.

What happens if I lose?

I will be at peace knowing I gave my best effort and took advantage of every opportunity along the journey.

I am sitting in a beautiful villa perched high on a mountainside overlooking Lake Como this morning- the view is stunning, and I can’t help but smile and be thankful for this time with my son and close friends.

If you read my blog, you have seen the public comments. You have not seen the host of private messages I receive every day. People are amazing and their stories unique. If I can make a wish, it is that these amazing, wonderful, courageous people will speak and share more publicly- your words are inspiring and your point of view important. You can make us all better.

If you ask, you will be surprised what you receive- I am constantly surprised and awed and thankful.