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.

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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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Florida Fun

Fifteen months after the beginning of my Non-Hodgkin’s Lymphoma illness, with treatment and non-stop worrying, I finally felt good enough to take a trip.  Also with my mother now being cared for in a nursing facility, I booked a trip to Florida to visit my dear friend, Jill, the amazing friend who nursed me back to life last year.

Here are some fun highlights from my visit:

He’s a Miracle

And that’s also his name:  Miracle.  He’s a Pitt Bull/Terrier mix who’s endured inexplicable suffering with details that no one needs or wants to hear about.  And unless Miracle begins to talk, no one will ever know exactly what he’s been through.

It’s probably better that way.

This gentle soul was abused, mistreated, neglected and found nearly dead on the side of a road in Miami a few months ago.  The Angels gently scooped him up and have worked tirelessly to bring him to good health.  They have convinced him that there are good people in the world who love him unconditionally, and continue to work towards righting the wrongs that have been done to him.   The organization that attracts brave, loving, and committed people who make it their mission to save abused and abandoned dogs is called Everglades Angels Dog Rescue (EADR). 

Jill is the Volunteer Coordinator at EADR.  The group organizes response and mission teams, and networks with other local rescue organizations.   They gather in groups during early morning hours with the intent of freeing another dog from having to fight for their life, alone on the streets, farms, and dangerous forests and swamps.  They’ve learned that the Everglades are dumping grounds for unwanted dogs, a place that is inherently dangerous and filled with alligators.  A place that cowardly people use to discard helpless creatures, and somehow, turn around and walk away.

The lucky dogs that get to ride away from this horrible existence are vetted, fed, cleaned, and loved.  Some are fostered in private homes and some stay in comfortable and clean kennels at a local veterinarian until they find their new families, the one’s they deserved from the beginning.

Miracle’s left arm was so badly injured that it no longer works.  He’s been involved with extensive physical therapy, including pool therapy to determine if there’s any chance for reviving this paw, but there isn’t.  So, he’s scheduled for an amputation next week.  He’ll no longer trip on this useless leg.

I had the pleasure of meeting him and sitting on the floor with him.  He’s still apprehensive about people and their motives, but has come a long way.

There are only good things and people in this dog’s future.

The Angels will see to that.

These three EADR volunteers reminded me of Charlie’s Angels. Their willingness to devote their time during their busy lives is admirable. Jill, Morgan, and Laura.

Monkeying Around

It’s a bit of a secret.  The wild monkeys of South Florida.  They’re thought to have escaped or been released by a tourist attraction or a lab in the 1950’s and have formed an enduring colony in a mangrove forest.  And unlike the organized hunting of Burmese Pythons in the Everglades who were irresponsibly released, have procreated, and pose a threat to humans, the monkeys are not on the authority’s list for removal.  They are managed, though, and people are forbidden to feed or closely interact with them.   We parked our car near the forest and looked high and low for a tail, some fur, or a monkey face through the trees and brush, and shockingly, we looked up and found a monkey checking us out almost right above our heads.  It was a magical moment.

Party:  Southern Florida Style

Since Jill moved to south Florida almost 2 years ago, she’s visited many road-side stands and wondered about the taste of many of the interesting fruits that are grown in the south.  During my visit, she was scheduled to go to a party that friends were hosting and thought about using this opportunity to try several exotic fruits with her friends.  This would be her contribution to the gathering.  So, we went shopping and picked out things that were strange-looking and had unusual names.  We also found a pamphlet that listed several of them with descriptions, and we cut out each one and taped it to a toothpick and placed it with its fruit so we and the party-goers would know what we were eating.  It was fun picking them out, arranging them for the party, and tasting them.  Now, when someone asks “What does so and so taste like?”, we can answer with experience.

The Ancient Art of Kite Flying

Growing up, we had a huge field behind our house that was devoid of trees and power lines.  We’d get our rudimentary kites out, let out some line, and begin running as fast as we could to lift the kite in to the air while letting string out.  Sometimes it worked, but often, we had to engage in many launch attempts before the kite lifted and flew in the wind.

As I planned my trip to Florida, I thought how much fun it would be to fly a kite again.  So I ordered some kites through Amazon and had them delivered to Jill’s.  I was fortunate enough to get to the beach twice to fly, and was wonderfully surprised to find that I didn’t have to run.  The wind on the beach is perfect for kite flying, and all I had to do was raise the kite up as far as my arm extended, let go, and the wind took it.  I eventually got all of the string out and my colorful glider was flying high.  The little people we passed were mesmerized by the flying object, and if their mom’s allowed, they got to experience the magic of flying…with a little help from me.

We did a lot of quieter things too, like reading, walking, crossword puzzles and swimming in the pool.  A perfect escape.

 

 

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Mr. Mistoffelees

There’s never been a cat so brave,

As to sit in a living room chair.

He acts like he owns this place,

Which he did in yesteryear.

Then the dogs moved in to his house

And Mistofelles had to move on.

Now he’s back to reclaim his digs

And he hopes that he can call this his home!

“Oh, well I never, was there ever
A cat so clever as magical
Mr. Mistoffelees”

This cat, Dreyfus, reminds me of the Magical Mr. Mistoffeless from the Broadway show Cats.  He’s sassy and fearless, lovable and independent.  He came to live with my mother on September 10, 2005, the one year anniversary of my father’s death.   He was a stray kitten who showed up on my mother’s door step.  He earned the name Dreyfus because it was my father’s middle name.

When Brian and I moved in over 4 years ago, Dreyfus had to move out and into my mother’s in-law apartment.  The transition seemed easy for him because he was so connected to her.  He learned where his new front door was rather quickly.

Since my mother moved out to the nursing facility over 3 weeks ago, he figured out right away that he was alone and insisted on being with us.  Little by little, he has forged his existence with us and our two dogs in the house that was originally his.  Over the last four years, our dogs have only seen him prowling around outside and have chased him many times from inside the fence, where Dreyfus learned that they could never catch him.

So I give Dreyfus an enormous amount of credit for fearlessly coming into our house, sleeping with us, and prowling around inside despite the presence of the dogs.  The dogs still go in to prey drive if Dreyfus moves too fast, but he never gives up.  I think his desire to be with people after the 12 years of love and attention he received from my mother is what motivates and sustains him, even if he has to put up with monsters chasing him and barking at him at times.

Brian and I went out for dinner tonight, and when we got home, we found Dreyfus in the living room with the dogs…Dreyfus was on his own chair…but in one piece.  Progress, and eventually love all around, I hope.

Ladies and gentlemen
I give you the magical,

Marvelous,

Mr. Dreyfus!

PS:  I found a letter my mother wrote to my father after he died.  She mentioned how much she missed him, etc., and at the end, she thanked him for sending Dreyfus to her.  How could we not take him in and love him, if just in her honor, knowing how much the cat meant to her?

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Three Short Stories

A full and busy mind, with many things that also require lots of footwork can affect one’s ability to see and share things creatively.

So I’m just going to tell about three recent and unfolding stories in a matter-of-fact manner.

Story Number One:

I had a PET Scan on April 26th as a 3-month follow-up from the last one at the end of January.  I had an appointment with my Hematologist on May 1st, and while in the waiting room and then the exam room, trying to manage a whirlwind of emotions, including fear, uncertainty, acceptance, peace, and hope.   He told me to come back in three months, that everything looks stable and even a slight bit better.  I still have an area that lights up, but it seems like it’s a combination of calcification, dead cells, and other non-worrisome junk.   I can’t describe the relief and gratefulness I feel from this news.

The next story has resulted in the same feelings that this story did:

Fear, uncertainty, acceptance, peace, hope.…and gratefulness.

Story Number Two:

Yesterday, my mother moved into a skilled nursing facility.  It hit me like a lightening bolt less than two weeks ago that she needed to be where there’s more care, attention, and opportunities for socialization, and I need the same.   It was a difficult day for both of us, but we’re both adjusting.  The staff think she’s cute and sweet.  And for her first full day, (today) she attended an activity where the main attraction was a pink pot-bellied pig named Bacon Bits.  I was lucky enough to be at the pig event too.  After a while, I asked her if she wanted to go take a nap and she said “no, not until the pig leaves.”

I knew at that moment that this was the right decision.

He really is pink under his sweater.

Story Number Three:

I bought a bicycle!

I pick it up next week and plan to pedal down the river and through the woods, and leave my cares behind for a while!

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Hate~~~Love // Love~~~Hate

~Living with Non-Hodgkin’s Lymphoma that is Hopefully in Remission~

I think of hate and love as being very separate and different.  But I’ve also heard many times that someone has a love/hate relationship with someone or something.  It seems illogical to have feelings that are opposing about a thing or a person, but they really go together and seem to create a balance.

Without studying Yin and Yang to any great degree, I have thought about this seemingly unusual relationship of opposites as it related to love and hate.

Here’s my list of Hate and Love that’s been going through my mind lately:

My Hematologist: 

-I really hate him.  When I think of him, my first thought is that he is the barer of bad news.  He has actually called me on my cell a few times and never has anything good to say.   He walks into the exam room and tells me I have cancer or that my scans and biopsies are not normal.  I HATE him!

-But I really love him too because he has told me on a few occasions that he has thought of me and my complicated and puzzling case over periods of days which leads me to believe that he wants to help me in the best way he can.  He was the one who arranged the treatments for me and wrote on the care plan that the goal was for cure.  I LOVE him for giving me hope in my darkest hour.

Chemo:

-There’s nothing scarier than coming to the realization that Chemo poison will be poured in to your body.  The stories of the immediate side effects are enough to trigger a pity party, and God knows what all of the late term side effects can be.   I hate that we even need Chemo and can’t just eliminate the beast, cancer!

-But, Chemo can also be life-saving or prolonging, and as it turns out, the side effects are not as bad as they used to be, and can be managed very easily.  I love having Chemo as a weapon in the arsenal against cancer.

Testing, Testing, and more Testing:

-I hate all of these tests!  It sometimes feels like a full time job scheduling tests, preparing for them, and then waiting for the results. Waiting is the worst.  Anxiety provoking.

-But these tests are absolutely necessary and can be life-saving.   With lymphoma, the tests are so refined that they can usually isolate one kind of lymphoma from about 80, which helps with treatment decisions.  Without extensive testing with precise outcomes, prognoses can be less than favorable.

Cancer:

-It’s obvious that cancer is hated.  A no-brainer.  An unplanned and uninvited guest.  A challenge that no-one wants to face.   We all HATE it.

-But I’ve read time and time again that having cancer has been an enlightening experience for so many as it has brought in to focus what’s important.  It’s also sent many people on to important tasks of research, writing, and developing important programs that support others in their personal battles.  I don’t think I’ve ever read or heard anyone say they LOVE cancer, but I have heard that they wouldn’t trade the experience for anything.

I’m not sure I’m there yet, or will ever be there for that matter.

This diagnosis has changed me, but I’m just not exactly sure about all of the ways yet.

Enlightenment doesn’t happen overnight.

I can wait patiently to learn of all I’ve gained from this, hopefully including having a better understanding of the meaning of life.

I’m sure it’s worth waiting for.

I have a love~~~hate relationship with this “work of art”. I really hate the finished product, but I love the technique and can see myself trying it again, maybe with a better focus and plan.

 

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