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.

 

Medical Update 1.25.19

My medications appear to have stopped working and there is some tumor growth in my bones and lymph nodes. The good news is the growth does not appear to be very aggressive.

My docs are trying to find a way to biopsy a tumor to check for mutations that might offer more treatment options, I will know more next week.

I am being offered a clinical trial that is a combination of therapies and I will consider it over the next month.

Despite how this sounds, I was encouraged based on how I have felt lately. I’m ready for the chemo fog to lift and my energy levels to rise.

Thanks for your thoughts and prayers!

Life, Cancer and God

I expect to pass through this world but once.

Any good therefore that I do, or any kindness that I can show

to any fellow creature, let me do it now.

Let me not defer or neglect it,

for I shall not pass this way again.

-Stephen Grellet

 

When I left New York to cross the Atlantic by ship on January 3rd, I was both excited and ill at ease.

I’ve been absent for a bit, my peace disturbed, and I have struggled to understand why. I’m working on finding my center and I will finish what I started but I needed time to sort things out.

Sitting on a ship in the middle of the North Atlantic is peaceful and inspiring, yet you can’t help but feel a sense of how insignificant we are in the grand scheme of this world. The forces of nature are beautiful, terrifying and more powerful than anything man has created.

I was struggling on two fronts; questioning my faith in people and my faith in God. Not long ago two significant and seemingly unrelated events occurred. The first involved allowing a toxic person back in my life and the second involved a simple act of kindness; a gift. Both events were show-stoppers, awakenings of significance.

In the first case with respect to my faith in people, I am reminded that despite my best efforts and intentions, I can fail spectacularly.

For a long time, my ego wouldn’t allow me to acknowledge it. Realizing I can fail despite my best efforts and commitment is a humbling lesson. Loving someone cannot make them love you nor can it change their behavior. More importantly, I realize continuing to love someone who is incapable of returning the affection, is not a continuing failure on my part, it is my choice. For the time being, I’ve made my peace with it and accept the consequences of my choices.

All of which brings me to the more significant event which occurred one evening not long ago.

After a nice dinner with friends, in the restaurant parking lot, a friend casually reached into his car and handed me a copy of When God Meets Cancer by Lynn Eib. I was immediately intrigued by the title since God and Cancer are rarely mentioned together in a positive discussion. Usually it involves an old tired argument concerning the existence of God which, in oversimplified terms, postulates that cancer in children (or the innocents) is proof that God doesn’t exist (or worse, God is not a kind and loving God but rather a vengeful God). Having spent many hours in a cancer hospital observing children from the ages of 2 to 20, I have a very different belief and experience. I’ve watched a two-year-old sit peacefully in his father’s lap for over two hours, never squirming or tugging at the tubes dangling from his tiny body. I witnessed a sixteen-year-old girl who had lost her hair and was all skin and bones make the rounds in the waiting room encouraging other children and adults with kind words and offers of assistance. There is a peace and sense of trust in every child I encounter- God is most certainly present in their lives.

Lynn Eib’s book sat untouched on my coffee table for weeks. My head trash told me I was going to read some good old-fashioned admonishments about committing my life to Christ in order to be “saved”. Since I am not overtly religious in any traditional since, I was put off by the title- maybe even scared that I would discover a fundamental flaw in my belief system and in my plans and intentions for how I want to live the rest of my life. As usual, I was wrong; dead wrong.

Lynn Eib is a recognized Christian author, married to a pastor, and has a commanding knowledge of the bible. She is also a cancer survivor and works in an oncology practice and is charged with spiritual counseling of the patients in the practice. She also runs a prayer group in her spare time. Lynn can quote scripture verbatim while I struggle to remember a single verse in its entirety. In the end, I discovered that we are of like mind and despite my ignorance of bible verses, we a share a common belief that, with the proper attitude and perseverance, cancer can never defeat you.

Whether you live or die, is not the measure of success- how you choose to live is.

A win could be as simple as reconciling with an estranged family member or telling your child that you love them and having them understand or learning that your friends are going to welcome a new life into the world.

I found myself nodding in agreement as Lynn summarized what she believes is necessary to battle cancer and win. There are three critical elements: the heart, the mind and the soul. The heart needs the proper attitude which she calls acceptance; defined as dealing with life with reasonable expectations. The mind requires peace- the negative loops need to be broken and trashed, not recycled. The soul needs hope- hope in the face of whatever circumstance you find yourself. Having hope does not mean you have unrealistic expectations, it means you have faith in something greater than yourself. Hope sustains the soul above all else and offers light in the darkest of times.

Lynn’s book is inspiring. She cites multiple examples of people who beat the odds and survived well beyond expectations or found joy or peace at the end of a troubling life. She does not “preach”, nor does she hide her faith and beliefs- one of which is that everyone facing cancer (or any serious illness) needs to be part of a “congregation” or prayer group. She is an absolute believer in the power of prayer.

At first glance, I came up short on having a congregation and a prayer group. I am woefully ignorant of scripture, I do not attend church and I am not a member of any “congregation”, much less an organized prayer group. I do believe in a powerful and loving God and I try to follow the basic principles espoused in the bible and I am firm believer in the power of prayer.

I am sure there are enough billable hours in this single issue for Lisa to acquire a new beach house, but when I finished Lynn’s book, I realized I have been living my life in the manner she advocates despite my ignorance of scripture and inability to apply it directly in my challenges. The reality is I am constantly reminded I do have a congregation of people who pray for me. I had to open my eyes and my heart to see that we do, in fact, reap what we sow, and I am very grateful for all of the support I have been given.

As you may have noted, I tend to deflect. I struggle to accept anything from anyone. I find more satisfaction in giving than in receiving. I will suffer before I allow anyone or anything to suffer. It is in my DNA. What I have come to understand, with the help of Lisa, is no matter how selfless this may appear, it is actually selfish. There is a time and a place for allowing people to care about you and for you- the decision isn’t mine to make and never was. Just like the little boy sitting in his father’s lap, I am surrounded by family and friends who love me- this is where my peace is. The most disturbing part of this circle is that I allowed one person to disrupt the most important and supportive relationships in my life.

I came to the end of my voyage with a better appreciation for the way God works in our lives and more confidence in the daily choices I make in how I live my life and spend my time and efforts. I made a mistake and it cost me my peace for a while but I’m ready to get back on the horse and ride.