Fruit Fly Living

Before I write some thoughts about today, I want to announce the winners of the book “Live Like a Fruit Fly”.

Ferne and Donna!

I will be in touch with you ladies and will arrange to get the books to you.

Thank you to everyone for playing along and for taking your precious time to read my posts.

I spent the morning at the American Cancer Society’s Hope Club.  I was there for a session of NIA Dance, and then had an hour Reiki session with a very intuitive practitioner.  In between my appointments, I enlisted Miriam, who is a volunteer that sits at the front desk as a greeter, to be the official name picker from a bag of over thirty names to see who the winners were.

The Hope club is full of volunteers like Mariam, including the NIA instructor and the Reiki practitioner.   I’m so grateful for these people who donate their time, talents, and love to bring hope to people who are searching for a wholeness that they fear they have lost.

These morning activities grounded me and allowed me to be open-minded about a meeting I had with Hospice staff about my mother this afternoon.  Mom has been failing right along, but even more so since her hip fracture in September.  She’s not eating much and weighs a mere 82 pounds.  Hospice will begin their services today with Mom and will be extra sets of compassionate eyes, ears, and hands, and will provide an extra measure of attention.  It was a no-brainer to agree to having them as part of her care team.

My mother said many times to me throughout my life that she’s not afraid to die, she just doesn’t want to suffer.  We will do everything in our power to grant her this wish.

And knowing my mother, if I asked her how she lived her life, I believe she might say that she lived like a fruit fly.

 

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Posted in Heavenly News...and Other Nice Happenings, Life with Mom, What Else: About Life | 5 Comments

Remission

I’ve spent the last 19 months wondering if I was going to live or die from Non-Hodgkin’s Lymphoma.   The truth is, there’s never been a better time to have this diagnosis as the treatments just keep getting better and better.

I spent last weekend at the North American Lymphoma Conference in Brooklyn where the collective energy from the presenters and the conference-goers was palpable.  The front liners, AKA the physicians, researchers, and the staff at the Lymphoma research Foundation mentioned on several occasions that their mission is to eradicate lymphoma, and in the meantime, develop successful treatments that may lead to a cure or at least provide borrowed time for some who continue to wait for the magic bullet.    The conference goers brought just as much hope with their promising stories of success, their commitment to persevere, and their acceptance of the position they’re in.

I came home from this enlightening weekend to prepare for another PET Scan on Monday morning.  I met with my Hematologist yesterday morning about the results and was given good news.  Some people achieve NED (No Evidence of Disease) with their scans right after they finish chemo, but I have a persistent area that keeps lighting up and causing doubt.  This scan, compared to the two others I had when treatment ended (one in November, 2016, and one on April, 2017) shows a decrease in the size of the area and less uptake of the tracer used in the test.  This means that the area likely does not harbor lymphoma cells and is just scar tissue, which my body is actively absorbing.

I asked if I could consider this a remission and if so, when did it start.  I fell in to the “time will tell” category, and time has revealed that from a medical standpoint, I’ve been in remission for about a year, since my last chemo was given in November, 2016.

I have not put all my eggs in one basket during this year of recovery.  Although chemo and western medicine are invaluable and necessary, there are so many other things that can be done in conjunction with standard and conventional treatments.  For instance, I now have an Integrative Medicine physician who has made an enormous impact on me and my understanding of my disease and how to live well.   I schedule Reiki and massage appointments routinely through our local Hope Club run by the American Cancer Society.  I have a standing monthly appointment with a wonderful Reflexology practitioner, leaving each time feeling relaxed and centered.  I practice guided meditation every morning and before sleep.  I eat organic food, and drink filtered water.  I keep a group of people close to me who I consider my soul mates.  I ride my bike and often meet friends out for fun at an out-door music venue.  I keep on painting, which is a form of meditation, and I read books that inspire me.

In fact, I finished a book on the train back from NYC Sunday night called “Live Like a Fruit Fly”, by Gabe Berman.  In a funny and meaningful manner, he shares his thoughts and experiences about how short this life is and how important it is to live in the moment, forget about the past, and to consider the future only when it becomes the present moment.  The book doesn’t claim to cure disease, but it promises to illustrate how importance our choices are, and the impact they have on how we live each day.

I loved the book so much, I ordered two more copies and would love to give them away.   Leave me a message either on this Blog post, on Facebook under this post, or email me at:  merganserscrossing@gmail.com, and on November 1, I will pick two names and send copies to the winners.  You can always order your own book.  It will be a sound investment, I promise.

As I close this post, I’m reminded of something I read last year from a fellow Lymphoma survivor:  “Remission, I couldn’t wait for it, then I got it….its like being in the Witness Protection Program and someone is always trying to still kill me.”

Although this thought is completely normal, and I fully understand it,  I will do my best to leave worry out of my life.

And when I find my self worrying, I’m committed to remembering to “Live Like a Fruit Fly”.

A painting I did of my cousin’s house. I added some flowers, a bird bath, a cat, and a Adirondack chair. Artistic license, as they say.

 

Posted in Heavenly News...and Other Nice Happenings, What Else: About Life | Tagged | 9 Comments

OMEGA Magic

Last year, while going through treatment for Non-Hodgkin’s Lymphoma, I read a book called “Radical Remission”, written by Kelly Turner, PhD.  I heard about it on one of my Lymphoma Facebook Groups.  It promised to be a good read and bring hope to people with cancer.  It proposed that there are other valuable things to focus on while trying to get well, and that although conventional medicine is relevant and many times necessary, there are things that can be done individually and without a prescription or doctor’s order that have shown to have a positive effect on healing and curing, many times, against all odds.

Dr. Turner and her husband, Aaron Teich came to the Omega Institute in Rhinebeck, NY this weekend and presented a weekend-long workshop on the principles that she discovered during her research.  She had traveled the world with Aaron to interview people who continued to live, and live well even when medical science said they wouldn’t.  She found that there are nine key factors that these people engaged in or kept in focus after given a grim prognosis.

In my own words, here they are, and in no particular order of importance (they’re all equally important):

  1. Having a reason(s) to live.
  2. Taking personal control of your health.
  3. Making significant changes to your diet.
  4. Herbs and supplements
  5. Fostering positive emotions
  6. Identifying and letting go of suppressed emotions
  7. Recognizing and following your intuition
  8. Embracing social support
  9. Spiritual connections

The information from the workshop will take a while for me to process.  It wasn’t really learning new things, especially since I had already read the book, but to reflect on the in-depth discussion of each area, what each concept meant to me, and how the people in the workshop processed the information.  We all shared a lot with each other.  Most of us have or had a cancer diagnosis of some sort.  Some were there as a support to a friend or family member, and some were there out of interest.  It was an exceptionally enlightening weekend.

The Omega Institute was a magical place.  No matter where you went on the 250 acre campus, there was a feeling of support, love, and wellness, and an urging to be creative and to discover.  There were comfortable places to sit quietly and read, a lake with a nice beach to enjoy, hiking trails, and little treasures “hidden” all over.

The first day, near the meditation sanctuary, I came across theses stones which were arranged to spell out DIVINE LOVE.  Two days later, the words were eliminated and the pile of stones were inviting anyone who wanted, to arrange their own message.

I came across this interesting creature during one of my wooded walks.

The story about this is if you ask the Green Man to guide you, he will.  You can leave an offering in the little metal container.  All I had was a little metal clip.  I dropped it in and walked away knowing that if I ask, I will receive.

Before dinner one evening, I spotted this Adirondack chair under the illuminating yellow tree, and took up residence in it to read a while.  On one of the arms, “capture life’s moments” was messaged for anyone who sat for rest.

I was walking through the grass when I spotted something yellow on the ground.  And this is what I found.

This beautiful pathway leads to the dining hall on one end and Guest Services on the other.  A path well traveled.

The Omega beach from my kayak.

A quick painting on the beach.  The hammock defies physics, but it was so much fun to do.

There were other workshops going on at the same time, including a Women and Power Retreat which drew 500 participants.  So, there was no room for loneliness.  If being alone was something you wanted to do, it was easy to escape into the woods, catch a hammock on the beach, sit quietly in the meditation room or the Ram Dass library, or retreat to your dorm room.

If meeting people from all over the world was your thing for a while, there was no shortage of far-away guests.

Hawaii, Oregon, Illinois, New Mexico, California, Australia, Africa….

 

 

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Kicking it up!

I got a call on the Saturday of Labor Day weekend from a nurse at my mother’s facility telling me that she fell, but seemed OK except for a few skin tears.  The next day, the phone rang again with new information:  Her hip was broken.

I whispered to myself “Here we go!”

I know all too well what that means for her future, and then for the immediate moment.    It was a holiday weekend.

Mom languished for 3 days in the hospital on morphine before a surgeon could operate.  She was restless, confused, in pain, not eating much, but being well cared for by my observations.  She needed a “sitter” because she kept trying to get up.  She had no idea that she broke her hip and that she was in line for surgery.

Mom finally had her surgery and was sent back to her facility two days later.  Now in a wheelchair, she goes to physical and occupational therapy every day, and has amazingly improved with her walking, although not to the level she was before the fall.  And I know in my heart that she will never rise to her previous level of movement.  I knew this injury would spell out a new life for her, one that is smaller than the previous one, which began the day she moved in to the facility almost 5 months ago.   By small increments, her life was fading away any way.  Her dementia is mostly responsible for that.

I took her to the orthopedist the other day as a follow-up from her surgery.  We had some interesting conversations that convinced me that her reality is so different that her real life.  She told me that she had to find a place for Grandma to live (her mother).  Her mother has been deceased since 1979, and would be over 120 years old now.  She couldn’t figure out why the x-ray people in the doctor’s office never mentioned Grandma.

She also told me that her husband is deceased (my father), which is true, and that she’d like to find someone to “Kick it up with.”  I asked her if she meant she wanted a boyfriend, and she said “Yes.  I’m in pretty good health, and it would be fun to have someone to do things with.”  I was thrilled to learn that at least for that moment, she had hope and plans for her future.

I was cleaning some things out of her apartment today.  I found a small scrap of paper with her hand writing.  It said:  “He taught us how to live and now he taught us how to die.  That rainy day is here.”  Maybe this is written in scripture somewhere.  Maybe she saw it in something she was reading.  Maybe she made it up.  There’s no date on it, so I can’t match it up to a time in her life when she may have been assessing her status and future.  But it does give a clue about how she was thinking on the day she wrote it.

This all makes me wonder if it’s better to be able to contemplate life, death, and everything in between?

Or is it better to think that you’re OK when you’re really not, and have no capacity for anticipating the unpleasant things that the future holds?

I’m not sure I would know the answer if the questions were about me, but as my mother’s daughter, I’m comforted knowing that she has an alternate reality than the one I see for her, and according to her, she plans to have some fun.

This was Mom almost 5 years ago when we first moved in with her.

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Mama Bear

Almost four months ago, I gave my mother up and moved her in to a facility.  “Gave her up” is what I feel like I did, meaning I could no longer be her caregiver.  I feel in some ways that I’m a failure, but know for a fact that I’m not.  But that feeling creeps in every now and then, and I have to remind myself that what I did was necessary for her and I alike.  As my friend Madeline said to me recently:  “You are now free to be her daughter again.”  And that’s the truth.  And although I still manage her care, it’s on a different level which allows me to work, have some fun, and most importantly, be my mother’s daughter again.

My mother has made this transition so easily, really.  She has always been someone who understands that life is full of beauty and challenges, and how we accept the things that come our way will dictate how well we live.  Even with her dementia, her natural personality still shines through.  I know this because I see her smile when she’s resting with her eyes closed.  When she’s asleep, she smiles the moment she awakens, brightening up her surrounding atmosphere.  She dances a little with an arm in the air while hanging on to her walker with her other hand when a staff member interacts with her.  And when I hear people in passing saying things like “She’s so cute, I can’t stand it” or “Look at how beautiful she is” or “I just love her!”, I know she’s still her, sharing her best with others.

Her facility had a Luau today.  I found her in her recliner smiling with her eyes closed.  I got her to her feet, donned our straw hats and leis, and we went to the festivities.  She ate almost two plates of food, played some games, had some cotton candy, and bet on a stuffed animal pig race and won.  Then she had a rainbow sherbet and settled in to listen to live Hawaiian music.

She’s still making the best of her life and accepting the good with the bad.  I continue to learn from her because she’s my mother and that’s what a mother does…she teaches.  And I know I can still learn, especially from someone one who I looked up to and admired my whole life.

So when Mom tells me that her mother sold her house and then it was demolished, and that’s why she has to live where she’s living, I don’t attempt to correct her.  I say things like, “Well, looks like you found a great place to live…” and I leave it at that.  It’s better for her and I both that she not really understand or remember the truth.   Sometimes, believing in alternate explanations is a good thing.

Posted in Life with Mom | 6 Comments

Keeping the Faith

In two days, a year will have passed since I crawled in to the chemo suite and begged them to start dumping poison into me with the goal to cure my disease.  That’s what the Doctor wrote –  “Goal:  Cure.”  I said to the nurse:  “He just wrote that because that’s what you write at the beginning of a treatment plan like this.”, implying that he didn’t really mean it.  I was in an awful state of mind.  She said he wouldn’t have written it if he didn’t believe it to be a strong possibility.  It gave me hope at a time when it felt like I would be dead in just a few short weeks if I didn’t get treatment.

Since then, I’ve joined a few Non-Hodgkin’s Lymphoma groups on FB and other sites.    These groups, for the most part, have been encouraging and informative, and promote a feeling of togetherness, or at least not feeling alone.  And I’m not one to write much on these sites, and especially not one to start a conversation, but reading about people’s experiences, recoveries, challenges, fears, hopes, and plans for the future has really helped me.

In addition to my cyber “friends”, I’m also so lucky to have a friend who had this disease who has been through so much, including a nine-year remission period with a relapse, and a few stem cell transplants.   I know it hasn’t been easy for him, especially since he has young kids, but he is so willing to share his experiences, both in emails and by phone, his eternal thoughts for hope, and also some tears with me as we both try to live each day with gratefulness and faith.

I saw my hematologist yesterday for my three-month check-up.  No scans this time, but blood work.  He told me that all of my results are back to within normal limits, and because I don’t have any tell-tale lymphoma symptoms, he has recommended three more months until another check-up.  So, another PET scan is in my future, and then a meeting with my MD.   I anticipate a restless week prior to my next appointment, filled with “what if’s”.  Scanxiety and scanticipation are two words that my cyber friends talk a lot about.  I understand their meanings all too well.

At the end of the emails that my friend sends me, he always writes; “Keep the faith.”  I’m forever indebted to him for his willingness to promote hope.  You see, my friend and I are not really “friends”.  We’ve never actually met in person, but we are connected in a way that meeting in person is not necessary to be pals.

He is my friend, and we’re both keeping the faith.

And that’s enough for today.

I went to a painting class at the Hope Club a few weeks ago, and this is what we painted. I’m signed up for the next class and can’t wait to see what the teacher has planned.

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My Three Wishes

Vincent and Jon with my mother on Vroman’s Nose in Schoharie County, 2013.

As Jon transitions into his new life, bright with the promise of eternal love, I’m flooded with nice memories of the last ten years.  The valuable wisdom he imparted by being authentic and unafraid to live life on his own terms is a legacy and a gift to me that will be cherished always.

His laugh and sense of humor was uplifting and contagious, and never at the expense of others.

He created comfortable and inviting surroundings, and welcomed friends from all over while making new friends along the way.

During his time of declining health and uncertainty, he lifted me up when I was afraid and worried about my future during my health crisis and diagnosis of Non-Hodgkin’s Lymphoma.

I consider him my brother and love him unconditionally.

I send him off with enduring thankfulness and the promise of seeing him again.

Jon making me laugh during a front yard wine and cheese party in August, 2015, about 3 weeks before his first MD appointment with his sore leg.

~My three wishes for you, Jon~

~~that the light which surrounds you illuminates your path so that you arrive safely to your destination.

~~that the warmth and generosity that you have shown others is given back to you in spades.

~~that you are immersed in the gentle peacefulness and well-being that you so enormously deserve.

I will miss you forever.

My friend and brother, Jon.

Jon Lorigan

11/09/56 – 06/19/17

 

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