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.

 

 

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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.

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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

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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*

 

 

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The Final Disappearing Act

The story goes that Merlin’s tail saved him.  He was born in South Carolina, and just before his move to the Northeast, he lived in a cage in a barn with a bazillion other unwanted dogs.  A dog rescue worker had been through the barn and made a list of the dogs she wanted to pull and send to rescue organizations.  Merlin was on another list.  The list for dogs to be euthanatized.  He wasn’t even a year old.  We don’t have the story about how he ended up there.  I imagine that he was a handful and just wasn’t wanted.  But the rescue worker noticed something about him that she couldn’t ignore.

His tail never stopped wagging.

He was hungry for attention and made it known that he was really a good boy despite his youthful energy and inability to pay attention for more than 3 seconds.    She said to herself “I’m not leaving without this dog” as she was finally convinced of his good nature.

She was right.

He was a good and smart dog.

We named him Merlin.

He performed his final disappearing act today.

We’re aware of how lucky he was that day in South Carolina.

We’re also aware of how lucky we were to be part of his act for the last ten years.

“There is no pain so great as the memory of joy in present grief.” – Aeschylus

 

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When a stranger says “I Love You”

I was leaving a patients house a few months ago (I’m an Occupational Therapist working in Home Care) and yelled to the patient’s husband:  “Bye, husband”.  I couldn’t remember his name.  He yelled: “Bye, I love you!”  I was a little shocked, but in a good way.  How could my day get any better than when a stranger tells me he loves me, and within ear shot of his wife?  His wife, my patient, and I laughed, and both commented on how funny he was.

A short time before that, I was leaving another patients home for the last time when she hugged me and told me she loved me.  I loved her back.  She was one of those people who was easy to be around, and seemed to take her somewhat grave situation in stride.  She and I happen to share the same oncologist.    We had “Doctor” stories.

Yesterday, I was discharging another patient who I really connected with.  She was 90 years old, funny, spiritual, and accepting of her situation, and seemed to be happy with the way she lived her life.  When I was saying my final good-byes, she told me she loved me.  I loved her back.

A few weeks ago, a bunch of us were out having a good time.  We were seated near a woman who I came to know as Andrea, who had her tiny service dog with her.  He was wearing his “work” vest.  Before the music started, she allowed me to feed “Jerry” some leftovers, which he loved.  The live band started to play and the general concern from our group, and I’m sure people around us, was how assaultive the noise must be to this little angel.  I had hoped that Jerry was deaf.  He was old.   Andrea was staying at a local hotel, and after a while, she said she needed a ride, and was going to call a cab.  She was tipsy and tiny herself, so I offered to give her a ride.   (a friend rode with us just in case…)  In the parking lot at the hotel, Andrea hugged me and told me she loved me.  I’m sure it was partially the drink talking, but it touched me just the same.   I loved her back.

In our society, those three words are usually saved for families and for people who are romantically in love.  But love goes way beyond that.   As my brother’s friend was dying last year, he told my brother to tell me that he loved me.  I already knew this.  Perfect love (love itself is always perfect) need not be verbalized.  And when it is, it’s usually not a surprise.  It’s just surprising when someone you barely know says those three words, but often, deep down, you share the same emotion and about them.

I recently had a plumbing issue at my house.  When Gus the plumber was finished, I told him that I loved him in a fun tone.  I wanted him to know that I really appreciated his service and honesty.  He bent over laughing, but I think (I hope) I made his day.  He helped me, and did it in such a sincere and skilled way, that yes, I loved him for it.

As I’m writing this, I realize that it’s February, the month that Love is celebrated.  Since love goes way beyond romantic situations, and can mean endearment, fondness, warmth, adoration, loyalty, etc., and it can be with friends, family, or complete strangers, we have an opportunity and a special invitation to spread the goodness that lives in all of us.

I love you all!

Diane

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Walk Towards the Sun

I took a public health course in college several years ago.  I don’t remember much about the specific lessons, but one concept still invades my mind as a citizen and community member.   We were discussing drinking and driving and the campaigns that surround the efforts of the public health professionals to convince people not to drink and drive.   There’s a lot of psychology that goes in to advertising, and what was discovered was that ads like “DON’T DRINK AND DRIVE” were processed by the average brain as “DRINK AND DRIVE”.  Spelling out the directive “DON’T” was not recognized by the average person, and statistics showed that the number of drunk driving incidents went up.

Now, when I see a public service announcement of any kind, I first scrutinize it for its content rather than it’s intended message.  Then I hope I don’t get too hung up on the psychology and am able to receive the intended message, as I’m sure it’s meant to enhance our lives and keep us safe in some way.

In a conscious effort, I try to apply this psychology to myself and the way I live my life.  It doesn’t work all of the time, but I keep trying.

Here’s a beginning list to myself about “What to Do”.  As an exercise to get to the meaningful lessons, I had to first write what I “Don’t Want To Do”.

-Don’t waste time.  Seize the moment, day, month, year.  Engage in meaningful activities.

-Don’t accept or believe the blame people put on you.   Know that your actions, past, present, and future are sound and well-meaning. 

-Don’t second guess your intentions.   Live with the best purpose in mind, always.

-Don’t criticize yourself.  Recognize your strengths and live freely.

-Don’t work your life away.  Take a vacation and enjoy the moments of  disconnect from your job and your responsibilities.

-Don’t put too much emphasis on money.   Spend some money on conveniences and experiences.

-Don’t hoard things for yourself.   Give possessions away if they no longer serve you, or if you see someone who needs them more.   

-Don’t try to manipulate people or situations.  Let things unfold naturally.

-Don’t treat your dreams for the future as impossible.  Believe in your imagination.

-Don’t rush through life.  Practice mindful walking, eating, driving, etc.

-Don’t think your life is indestructible.  Recognize the fragility of life and live as though your life is a gift…because it is. 

-Don’t dwell on the past or spin future events.  Live in the moment while learning from the past and fostering hope for the future.

This painting is not turning out the way I had envisioned.  And instead of saying to myself “Don’t give up”, I’m thinking that “keep trying” is a better way to think of moving forward.

Painting after artist Chrysovalantou Mavroudis from Australia.

Happy New Year to all.

May 2018 bring fun surprises, unexpected blessings, and the best of health and happiness.

Diane

 

 

 

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