Even a blind pig gets lucky once in awhile……

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On Tuesday night I knew I was dying.

I was frightened for the first time in a long time- Had I done enough for the people I love? Do they know how much I love them? Will they be alright?

Apparently, my ER nurse shared my concern.

After stabilizing me, she silenced the alarms, dropped everything, grabbed my hand and spoke in calming tones- I have no idea what was said, only that it was soothing.

For 45 minutes she gave me courage I couldn’t summon.

I have since come to realize she sensed a need in me and left the room in silence to afford me an opportunity I have been dreading.

Amid the pain and confusion, I had a “conversation” text or voice, I can’t recall, – with someone I love dearly to tell her “goodbye”- from my hospital bed 3900 miles away.

I didn’t keep it together- I was a mess.

So, yes, I have a precious little secret who has changed my life in ways I couldn’t have imagined.

On a beautiful October evening last fall in the Palm Court at the Plaza in NYC, I met a most exceptional British woman who has transformed my life. She has given me hope, stuck by my side and supported me with no expectation in return.

In other words, I met my soulmate.

It was the first evening of my “Hail Mary” clinical trial where I still maintained hope and chance of killing the cancer bastard that has stalked me for the last five years.

I was hopeful with tempered expectations.

Little did I know I was going to meet my match- she is very private, wicked smart, professionally successful, funny, kind, generous without an ounce of pretense.

Her American friends don’t understand the attraction to a sick old American redneck as they refer to me. I don’t either, but I’m not complaining.

Maybe this was the fight I was supposed to win. I have certainly craved the intimacy and love, proving that staying positive has its benefits.

Despite her living outside of London, we have been fortunate to spend some time together and we are in touch daily thanks to technology.

Not ideal but we have made it work for us.

My diagnosis scared away several potential female partners and I was resigned to living the rest of my life alone- not anymore.

I have fought for my life, fought to remain positive and find the silver lining in everything- Clare is my blessing.

Those who follow this blog know that Washington Irving’s quote on tears speaks volumes for me.

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.“

In the wee hours Wednesday I was blessed with a little clarity for reflection and time for real tears.

I have no adequate words for the importance of this woman in my life- unspeakable love is a close as I can get.

Oh yeah, in case you don’t believe in an almighty power, I went from bedridden Tuesday to a walker on Wednesday to a cane on Thursday to walking unassisted today.

Random thoughts from the ER on a Tuesday evening…9.1.20

Two years ago I began to write – some was decent, other garbage…

In reflection, I share the following snippets that have proven true over the ensuing years.

  1. A cancer diagnosis makes you sit up straight and pay attention.
    You focus your energy and thoughts, time becomes precious- there is none to waste.
    You reflect on the past, live every single minute of the present and pray hard for the future. You laugh, cry and love in new and different ways. Greetings are more joyful and taking one’s leave becomes increasingly difficult.
  2. I find that laughter really is the best medicine and tears the rawest, truest expression of emotion. Lately, in private, the tears have come easier and more often. Excuse me if they become more public.
    “There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.“
    -Washington Irving
  3. Life is going to throw a lot of things at you and the worst thing you can do is try to carry them alone.
  4. I’m really not afraid of dying, I’m afraid of letting you down.
  5. Tears are words the heart can’t say.
  6. If you don’t learn to bend, you will break.

Medical Update 8.10.19

Since my last post here, I have been all over the map with medical treatment and battles with Afib.

I simply don’t tolerate medicines very well.

The Afib has stopped for now. The new cancer medication had side effects that were unacceptable to me.

Along with my oncologist(s), I have decided to stop all cancer treatment.

This was not a hard decision for me because I am not me right now.

Thanks again for the thoughts and prayers!

Quick Update 6.13.30

I returned Tuesday night after 10 days of radiation in NYC to my back and skull to try and shrink my tumors which impaired my vision and balance.

On Thursday I ended up in the ER with arrhythmia and was admitted to the hospital. I was discharged home yesterday afternoon. Trying to control heart with meds.

I’m sorry I could not respond to everyone but I was busy….

My plan is to transfer my care to Greensboro and hope for no new events…

My treatment will include one more medication that has a 50/50 chance of slowing the cancer- of course I have to fight insurance to be approved.

Again, I appreciate the thoughts, encouragement and prayers!

Update 6.7.20- thoughts on Sunday

I started this blog as an outlet for coping with/expressing my emotions while I fought cancer. I needed to express myself and serve others by detailing the struggle, volunteering valuable education, real world/real time experience and inspiration -I hoped others could relate it in handling their own struggles.

I am constantly learning and refining my thoughts.

II’ve observed, listened and spent many hours in reflection hoping to take a big, negative, overwhelming event and find something good and positive in all of it.

For what it’s worth, I found my voice.

I hope I’ve made you think, laugh and cry and reflect on what is most important to you.

This time has clarified some very essential elements for me:

Choice- we always have a choice, make good ones

Hope- hope sustains us at all times

Kindness- Costs nothing to bestow and ripples thru those around us only to be returned in ways we never expect.

I hope to be able to share a little more when I get home.

Medical Update 5.30.20

Due to the pandemic my treatment in NYC has been delayed about 3 months and we finally decided that I needed to make the trip regardless of the covid risk. Since it is a clinical trial, I did not have another option outside of NYC without potentially longer delays. I flew a circuitous route to the city on 5.28.20.

I was having a rough few weeks preceding the trip, losing some visual acuities and suffering dizziness and balance issues along with crippling pain in my spine and hips.

I was anxious to get checked out.

A series of covid delayed events kept delaying local interim scans and blood work so I was flying blind in a manner of speaking.

My gut was telling me something.

On the morning of the 28th I did not feel good about boarding an airplane or navigating my connection but I asked my brother to drive me to the airport and boarded my flight with apprehension.

By the time I reached my gate in NYC I was asking for a wheelchair to get me to the cab stand.

I did manage to check into my hotel but something was nagging me but I convinced my self I could make it until the morning.

Bear with me, I do have a point here.

After an unsuccessful attempt to nap I ended up in the urgent care at MSKCC (my primary hospital) and I presented with a fever which started a covid protocol and was promptly tested and isolated. To these medical professionals credit, the work up on me never stopped.

I was covid negative which did speed things up.

Morphine stopped the screaming pain and I was able to relax thru all the commotion.

At 2:43AM, the resident on duty informed me that I had a mass in my brain it was the likely culprit for my visual and balance issues.

I was surprised but not stunned- a January 17th brain CT showed nothing but I had sensed something for a while.

As I was processing all of this, they began prepping me for surgery- paperwork and physically- there was a neurosurgery team coming to meet me. They were waiting on the results of one final MRI scan and a consult with the radiation oncologist.

At this point I was alert enough to ask “why the urgency?”.

The answer was that the mass had a bloody halo around it and the fear was the bleeding would worsen increasing the pressure/problems.

I swear there is a very important point and an ending here… be patient!

Thru my morphine haze I recalled a conversation from 3 years ago with my Oncologist where we discussed metastasis of my cancer to my organs. He informed me that usually that was not the case except with very late stage events. Plus we discussed the mets in my skull specifically and he warned me that it was far more likely to have issues with a bone tumor pushing on the brain than actually penetrating the tissue. So I asked the question of the resident in charge which pumped the breaks.

The result was an order for another detailed MRI of the brain- which was completed early this morning.

Mercifully I am coming to the close….hang on…

In summary, it appears the tumor is not in the brain tissue, it is in the bone and can be treated with targeted radiation, not whole- brain radiation, or surgery (both of which have greater potential for complications).

True to form, a team, led by a radiation oncologist, is currently mapping treatment plans for radiation to my spine and my skull- we have been communicating regularly around the clock and I start treatment Tuesday for 5 days of radiation. Steroids and morphine have reduced the swelling and pain to buy me these next two days. As long as there are no “events” I will be here thru June 8th or 9th.

Finished! Ta Da! my points are:

1. Listen to your gut/body

2. Don’t try to be cowboy- ask for help

3. Take control of your medical and challenge advice/opinions that appear incongruent or just plain wrong.

4. Pick your medical team and trust your team- and every team has to have a coach and a damn good one- mine is excellent.

Special thanks to my long standing friend (it actually autocorrected to fiend- hmm Siri is a sneaky girl) and Davidson classmate Dave Lennox and his wife Leslie for coming to my aid yesterday and rescuing my worldly belongings and checking me out of my hotel. You guys saved me a lot of useless anxiety.

So, I’m not sure exactly what lies ahead- I have been warned that it may worsen before it gets better but I will continue to fight on.

It is Saturday morning and if you have a spare prayer lying around, I could use it about now.

As usual I have received a lot of lovely thoughts and notes- Thank you and Love to all!

Medical Update 3.4.2020

Thanks for the messages, I am a little tardy with this update…

My medical oncologist, radiation oncologist and my neurologist are in agreement that my headaches are not being caused by the tumors in my skull and the risks associated with radiating the brain are not worth the potential benefits at this stage.

I completed my fourth course of treatment in the clinical trial on Friday and so far, so good.

My interim scans show that my lymph nodes have shrunk and there appears to be no progression of the bone tumors.

My marker is my PSA and it is fluctuating which is puzzling but not too alarming at this point.

Again, thank you all for the thoughts and prayers! I will continue to fight with all I’ve got!

Medical Udate 1.26.2020

I recently completed the 3rd cycle (of 6 planned) in my clinical trial.

My progress is mixed and recurrent headaches prompted the doctor to order a brain scan.

The scan showed all the squirrels were in their cages but I have several tumors in my skull on the sides and at the base. The tumors have reached a size where they have started to cause mild swelling of the brain.

I am working to schedule appointments with my radiation oncologist to see if the spots can be safely zapped by external radiation.

A piece of good news is that the testing of my cancer genes shows a lack of a certain marker which should make me a candidate for a new class of drugs that is expected to be approved by the FDA by year end.

As always, thanks for the kind messages and prayers!

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.