Seven-Hundred and Ninety-Three

How do you measure a life, a friendship, connected hearts?

-In all of the times spent laughing

-And the times spent crying

-In the times trading stories in the high school cafeteria

-During the times spent listening to music

-The times calling each other out of concern during an illness

-Or the times just being together during the many seasons of loss

-The sharing of times with mutual friends

Never considering that one day, the fun and magic will end.

Seven-Hundred and Ninety-Three is the number of text messages that Diane and I shared over the last three years.  The number of times we thought of each other under the swirling realm of cyber space.  The number of times we texted to each other, “I love you, Diana”.  The number of times we wrote “Nytol” just before falling off to sleep.  The number of times we traded funny emojis, sad emojis, bright and colorful emojis.  The number of times we supported each other, laughed on line, cried together, and just enjoyed our life-long friendship.

Diane was a year old and I was two when our lives joined.   

A relationship that began without consciousness. 

A life time of being tethered souls. 

We called each other Diana.

My life will forever be missing a piece that just was. 

I’ll miss you for the rest of my days, Diana. 

Let the music guide you and hold you in the light for eternity.

August 21, 1963 – November 10, 2023

         R. I. P. My Dear Diana

Chicken Teriyaki, Pop Tarts, and Dog Food

With what seemed like little effort back then, we planned, packed and piled into our vehicles with several days’ worth of food, shelter, clothing, matches, and burnable dinnerplates. And an abundance of anticipation, heading to Follensby Clear Pond in the Adirondacks to pick out our camp site on one of the three islands.   It was first come, first served.  We all agreed on which site was our favorite, but any site would do.  We just wanted to camp, be together, and have fun. 

We had a row boat with a little motor, several tents, coolers, and cookware.

We had tarps, many gallons of water, and a few axes.

We brought our dogs, fishing poles, and beer.

For a few days every summer, we lived like royal out-doors people.

Our days began with the best camp fire coffee ever brewed.

Camp fire bacon and eggs were next on the list along with toast browned to perfection by the coals and dancing flames.  We stuffed ourselves, took our seats in our little camp chairs, and gazed outward on the beauty of the forest, the soft organic ground, the shadows that changed with the wind and time, and the crystal-clear water of the pond.

Lunch was our next fun challenge.  It frequently consisted of cheese and crackers and other forbidden snack foods, and of course a beer or two.   After lunch, some took naps, some read books or did crossword puzzles, and some went fishing.  The dogs basked in the sun, always with one eye open for catching a glimpse of the chipmunks who were systematically stealing their kibble right out of their bowls.     

Late in the afternoon, the coolers opened again, and the ingredients for the chicken teriyaki stir-fry dinner were set out on make-shift tables, and dinner prep commenced.  Slicing and dicing onions, garlic, broccoli.  The chicken was always prechopped and frozen at home, ready for the frying pan.  My brother Paul placed himself in the position of head chef, and began the culinary process of putting this camp meal together for the whole group.  He never showed up without a bottle of Teriyaki sauce.  The rest of us were sous chefs and knew our roles exactly.  We had done this so many times. 

The gathering of twigs and downed, seasoned trees was the next group effort in preparation for an evening fire.  The sound of loons, the occasional hum of an 8 horse power motor, and the rustling of crispy leaves from tiny land-dwelling wildlife entertained us. 

A restful night’s sleep was always guaranteed.  Afterall, living in the wild required a lot of energy.  And the “outlawed” pop tart was always on our minds as the morning snack before the next round of restaurant style bacon and eggs. 

Paul was always the ring leader of our trips.  Nothing bad could possibly happen with these remote trips that Paul couldn’t fix.  We were always in good and safe hands. 

He died this past summer.   

Remembering our woodsy sojourns. 

Toto, I’ve a Feeling We’re Not in Kansas Anymore

After almost three decades of dreaming, talking, and planning a move to Florida, we finally did it.  Moving across town requires adjustment, so it’s only logical that moving 1500 miles away is going to be an adventure (adjustment), and at the same time, an exercise in fortitude for giving up the known and heading into the unknown, unexpected, and unanticipated. 

We realized very quickly that we weren’t in “Kansas” any more.

This realization was never more obvious than for the witnessing and experiencing of the driving culture here in Southeast Florida.   We quickly learned that stop signs, speed limits, red lights, and common courtesy are all optional.  Law and order doesn’t exist on the roadways here.  It’s very necessary to adopt these ridiculous habits or get run off the road or run over.  I see people on bicycles and motorcycles (no helmets!) and can’t believe their bravery.  I often don’t even feel safe in my SUV.

So now, I have a very recent history of running red lights, rolling through stop signs, and rocking the gas pedal. But all in the name of safety and survival.  I recently witnessed someone driving up on a side walk to make a right turn in a small town square area. He was able to make his right turn 2.5 seconds faster then if he stayed on the road. This took place while a group of us were sitting in a drum circle a few feet away. 

One night, I was forced to go around someone who thought they owned the road.  I had the right-of-way and was already committed to continuing when I had to go around him. He apparently didn’t like the fact that I didn’t yield for him and he followed me home.  I drove past my house and turned a corner, parked and turned off my lights. I could see that he stayed at the top of my street, and backed out and left the neighborhood when he figured out that he either lost me or saw that I knew what he was doing.    

But there are also so many wonderful things here in Southeast Florida.

The 330 days of sunshine and warm temperatures.

The wildlife is interesting.

The Everglades are very close and are an incredible eco system.

Notice the alligator just upstream.

The beach. This goes without saying.

So, although we are under an interesting life transformation, some good, some not so good, we’re always finding interesting scenes and things to do. All with an abundance of sunshine, sandals, and a trust that we made the right decision.

When I was young I’d listen to the radio…..

I had my very own big brown radio when I was really young.  It was in my bedroom and it hummed constantly, but you could still hear the songs over the hum.  I’d be so happy when Tom Jones’ “She’s a Lady” or “My Sweet Lord” by George Harrison came on.

Then, Don McLean’s Bye, Bye Miss American Pie came out and I’d sing it for hours while swinging in the back yard.   As my elementary school years advanced, “Leaving on a Jet Plane” sung by Peter, Paul, and Mary came out, and all of the girls on the school bus sang it every morning as loud as we could until the bus driver threatened to quit.  We thought he was enjoying our chorus.  We were wrong.

I took violin lessons in elementary school, guitar lessons in middle school, and always wanted to play the piano.  (Maybe in my next life)  I joined the middle school chorus where we made two albums.  A few years ago, I tracked down my chorus teacher and he converted them into CDs for me.   Then I converted the  CDs into MP3’s and play them in my car.  Recently, I’ve been taking drum lessons, and just ordered a ukulele which I hope to learn to play with a music teacher friend who plans to teach us remotely.

My mother played the piano and the accordion, and was a terrific singer at home and in church.   She used to play the Roger Miller album and got us hooked on the song “King of the Road” where we would all sing and dance in the living room.

When she was in the nursing home, I arranged to have a music therapist visit her often.  The therapist played the guitar and sang Mom’s favorite songs.  She brought along a slew of other instruments and engaged my mother by encouraging her to play along.  It was a highlight for Mom and me, and I never missed a session.

Mom died last summer after contracting an upper respiratory illness.    Two hours before she died, the Chaplin Rabbi at her facility came into her room and played the guitar, and we all sang her favorite songs.  I hope she heard us singing in her honor.

Today is her birthday.  Although I miss her kindness, her sense of humor, the love she shared for her family and friends, and her never-ending bravery for facing life’s challenges, I’m glad she is not here during this catastrophe that we’re fully engulfed in.  I’m not sure how the universe would have kept me away from her at her facility.  I’m glad I don’t have to find out.

I celebrate her today and thank her once again for the motherly love and guidance she gave so selflessly.

I like to think that I’m handling this uncertainty the way she would.

With acceptance and hope.

 

 

 

The Bravehearts

I always wonder where the ideas, energy, and the sense of the immense importance comes from when people who are faced with adversity come up with programs and plans that offer support, encouragement, and fun to others in similar situations.  The Bravehearts, an oncology camp for women, is a perfect example of the mystery and strength of the human spirit.

Way back in 2001, a group of adventurous and enterprising women decided that facing a diagnosis of cancer is not something people should have to do alone or without having fun and enjoying life.   They knew all too well that shifting the focus from the dreadful characteristics of having a cancer diagnosis can be life-changing and sustaining.  Camp Bravehearts was launched with these ideas, giving women a place to go to find support, learn a new skill, encourage others, and to practice and master the art of being brave.

I found my way to one of the camp gatherings last month at Double H Hole in the Woods in Luzerne, NY.  Double H, founded by Paul Newman and Charles Wood, is a camp for children facing life-threatening illnesses.  The camp has allowed the Bravehearts to use their comfortable and magical wooded and lake setting to create camp memories that last forever.

The waterfront at Double H Hole in the Woods.

My roommate Beth, whom I had never met before, is now considered a dear friend.  We found that we have so much in common ranging from the kind of foods we eat to our desire to play an instrument.  We also both love to golf and dabble in art.  It turned out to be a perfect match.

Beth and I both signed up for music classes.  Our music teacher, Alan, as it turns out, has the patience of a saint as he guided us through learning a few chords on the Ukulele and some Taiko drumming patterns.  Somehow, very magically, he had us all playing like a band of rock stars.  It was so much fun!  Alan volunteers his time and gifts as a musician and instructor to the Bravehearts several times each year.  He packs his car with a bunch of ukuleles and drums, drives several hours, and creates a fun and supportive classroom environment for learning music.  To support his love of music and teaching, he has been found at public work sites asking for scraps of sewer pipes to turn into drums.  He makes the drums and the drum sticks and believes anyone can play music.  He proved that at this camp.

Taiko Drumming on a “custom-made-by-Alan” drum.

My roommate Beth, AKA Queen B, and Alan, our music teacher.

The Braveheart committee arranged to have live music on both Friday and Saturday nights.  Dr. Pezz and the Barkeaters played on Friday evening.  Pezz is an employee of Double H and an accomplished musician.  He and his band entertained us, and we were so thankful for their music.

Dr. Pezz and the Barkeaters. I was lucky enough to see them for the 1st time at Camp Chingachgook in September at Women’s Weekend. I sketched them there, and then heard that they were going to play at Camp Bravehearts. So I brought the sketch and painted it there. I handed it over to Pezz.

On Saturday, an enormous black bus pulled in carrying Flame, a gifted and unbelievably talented group of people with disabilities, who live a few towns away.  Flame have been together as a group since 2003 and have performed at the Rock and Roll Hall of Fame, appeared on Good Morning America, and have been featured in People magazine.  The story of their existence is so amazing, and can be read about on the above link.  They closed the curtains after playing many songs that night, only to open back up with all the band members wearing Braveheart shirts.  The love and support they showed the Bravehearts was so special.

The amazing group, Flame!

The weekend was full of meaningful activities ranging from art sessions, wellness and support groups, sidewalk chalk competitions, and high ropes activities.  Our entire group drove to Lake George on Sunday morning and spent several hours on a brunch cruise on the Lac Du Saint Sacrement dancing the day away while sharing the “Ship” with newlyweds and their wedding party.

At camp, I met an old friend and co-worker, Dave, who I hadn’t seen in at least 25 years.  He is one of the many volunteers who spend the weekend with the Bravehearts creating opportunities for joy and support.  Dave and I spent some time on Saturday afternoon sitting at a picnic table reminiscing about the old days.

My old friend, Dave and I at our Halloween party Saturday night.

The weekend ended with a closing ceremony that enveloped the essence of the entire weekend.   Pezz read the poem “Love Letter to the world”, and Karen, one of the founding members emphasized that we are stronger together, and will hold each other up forever.

To quote a sweet friend of mine who is dealing with cancer and all of the physical and emotional issues that come with it –  “Who knew that having cancer could be so much fun!”

I will look forward to gathering with my Braveheart Sisters again in the coming year.

My Cherished Friend

She went out of her way to include me.  Promised to wait for me so I could join her, her mother, and her two friends for dinner.   This single moment revealed her true nature.  Her Name is Francesca.

We met at the Annie Appleseed Conference in March of this year in Florida.  She was there with her mom gaining as much knowledge as she could to stay alive.  We soon discovered that we were at the Radical Remission conference together last Fall at the OMEGA Institute.  We shared so much in our quests to live.

My young friend transformed into another life a few days ago.  She was 34 years old.  She has a husband and two young children and many friends and family members who I imagine are trying to regain their footing from this terrible loss.  And, after reading all of the messages of despair, support, and wishes for peace that have been sent to her family, I’m even more convinced of what a special person she was.  The great girl who waited for me for dinner has been sharing her generosity, her hope, and her genuine love for humanity with the world.

With the idea that death is not the opposite of life, but is the loop closing on birth for human beings, Francesca has only withdrawn from her physical body, and lives on in a mysterious and wonderful way which many of us struggle to understand.

I hold her family gently in my heart with the promise of love, peace, light and acceptance.   All qualities of faith that make life bearable.

And Faith was her middle name.

 

 

This Guy!

When I became ill two years ago, I initially avoided googling my disease because I was so frightened and didn’t want to read about my impending demise.  Little by little, tiny rays of hope were being tossed my way, and I finally gained enough courage to begin my investigation and learn as much as I could about Non-Hodgkin’s Lymphoma so I could cultivate hope and learn about strategies to combat the disease.  I became committed to getting well and creating an environment in my body that would not support such an unwelcomed defect, or any other disease for that matter.   I admit that I wasn’t completely convinced that it could be done, but I had nothing to lose.

The tiny rays of hope came in many forms.  I had no shortage of friends and family members supporting me.  Oncology workers, doctors, hair and wig stylists, massage therapists and reiki practitioners came to my rescue too.  On-Line chat groups and Facebook groups with members just like me were life lines.

A couple of months ago, a post from a guy named Scott Baker showed up on my news feed from one of the FB groups I belong to.  It caught my eye because it mentioned the YMCA LiveSTRONG program.   For reasons I’m not sure of, I had a feeling that he was local.  I messaged him, and I was right.  We became FB friends.  I noticed on his page that he wrote a book called “No One Rises Alone:  What Almost Dying Taught Me About Living”.  The book is a detailed account of his experiences with four bouts of Non-Hodgkin’s Lymphoma, two of which included Primary Central Nervous System Lymphoma.  The disease went to his brain, and he suffered significant cognitive impairments as a result, not to mention the worry that he and his family experienced about his prognosis.  I just finished reading what was an honest and comprehensive account of his struggles and victories surrounding these health issues, and am profoundly moved by his description about how almost dying has changed him.  I’m also in awe that he recovered so well from the disease and the cognitive issues, and was able to put such a well written story together.  His hope, commitment to getting well, and his newly found and self-imposed mission to help others fueled his recovery.   He’s been free from disease for five years!

Scott knows the value of receiving help in many, many forms and wants to give hope and reassurance that the people he meets, either in person or in cyber space, know they’re not alone and that there’s hope.  I was a beneficiary of his good will last month as I was anticipating my upcoming scan and MD appointment.  He put my mind at ease, and my worries about the appointments diminished significantly.  The results of my scan were good.

I haven’t met this friend in person yet, but am looking forward to shaking his hand, giving him a hug if he’s open to it, and thanking him for sharing so much of his life in his book.

I saw this quote last week and thought of Scott and how it describes him to a tee:

 “I think of a hero as someone who understands the degree of responsibility that comes with his freedom.”

—Bob Dylan [Robert Allen Zimmerman] (born 1941)
Singer, Songwriter

The freedom he has experienced from working so hard to regain his health has come with a sense of responsibility to help others.

And as it turns out, he’s a natural and powerful instrument to all who have the pleasure of knowing him, either in person or from reading his book.

Thank you, Scott.

 

 

Crossing Bridges

~Living with Non-Hodgkin’s Lymphoma in the Rear view Mirror~

 

I crossed a bridge today that had a clearer path in front of me than the many bridges I’ve crawled across during these last 2 years.  Yesterday was the two-year anniversary of waking up in the middle of the night with excruciating pain that led me across what felt like a wobbly and swaying branch that was not fit to hold me up.

I had a six month CT Scan last week and met with my oncologist today for the results.  The report was good.   There’s still an area that shows up but it’s a little smaller than it was six months ago, and a lot smaller than a year ago.  This indicates that it’s likely that there’s no active disease.

My doctor wants me to have one more scan in six months, and if it goes as well as these last few scans have, he said I will be deemed cured.  I’m not going to argue with that, but I will remain realistic knowing that I had this disease for some unknown reason, and because it’s unknown, there’s no way of knowing if it’s really gone or will be triggered again.

If I’m smart, I will never forget my bridge adventures, but will also not live in fear.

My ordeal reminds me of a quote by Joseph Campbell:

“The cave you fear to enter holds the treasure that you seek.”

My treasures are too numerous to count or name here as a result of my diagnosis.

I’m assured that my wandering during these trying times was really an era of enlightenment.

I have so much to celebrate, to be thankful for, and to cherish.

I bow before the universe for how well I’ve been taken care of.

Message to self:  Carry on, Diane.

The Golden Years

We cheered Mom tonight as she endured a day full of balloons, cards, smiles, kisses, and happy birthday wishes.   Although she needed many reminders about what this day was,  she remained graceful and grateful which was evident by her smile when she saw her kids, the kindness she showed her baby doll, and they way she pet her new cat.

She turned 81 today.

And I’m certain she believes she’s still living the idea of the Golden Years.

“Some day you will be old enough to start reading fairy tales again.” – C.S. Lewis

Let us in. Please.

The cancer wagon pulled in to the secured entrance of Hippocrates Health Institute in West Palm Beach (WPB).  It was not anticipated that to enter the grounds, the driver’s identification would need to be shown.  Our driver complied, but not before someone in the car said to the guard “We all have cancer.”  Another voice was heard saying “This is the cancer wagon.”  The car filled with laughter while the guard looked a little mortified.  He ushered us in after seeing the license of the driver.

I was one of the lucky passengers in this vehicle.  I was attending the annual Annie Appleseed Conference in WPB a few weeks ago, learning about the many pathways to health.  I ran in to some people I had met last fall at the Omega Institute in Rhinebeck, NY at the Radical Remission conference, and another “friend” who they had hooked up with at this conference.  The galaxies must have been perfectly aligned for all of us to come together.   And although we all come from different areas of the country, different religions and backgrounds, and different cancers, we all had a couple of things in common.  We all experienced or are experiencing what it’s like to live with a diagnosis of cancer, and we are resourceful and understand that our own health needs to be managed first and foremost by ourselves, while gathering knowledge, friends, and a diverse team of people who will support our endeavors in healing and living well.

My friends decided to go to Hippocrates for dinner one night and invited me to go along.

My friend John who writes and posts interesting things on his Blog, Raining Iguanas has launched a “mysterious” bottle program where he attaches clever notes, adds a flower, and drops them off at various locations around town.  He happened to see a painting I did that had the words “Hope Grows Here” which I painted at our local American Cancer Society Hope Club, with our creative art teacher, Debbie.  John pulled an interesting bottle out of his stash and made one for me with the message of “Hope Grows Here”.  I brought it to the conference with me to remind me that Hope is everywhere.  It went to Hippocrates that night to as a way of sharing the hope I have been cultivating since my diagnosis of Non-Hodgkin’s Lymphoma.

As the conference ended and we all prepared to step through the doorway to continue our lives with new information and a sense of support from the many presenters, I left knowing that these people, my friends, who I hardly know, have my unwavering respect, my undying love, and my never-ending wishes for enduring hope and wellness.

My friends Francesca, Bud, and Violet.

*Hope * Grows * Here*