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

 

Posted in What Else: About Life | 4 Comments

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.

 

 

Posted in What Else: About Life | Leave a comment

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?

Posted in What Else: About Life | 4 Comments

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!

Posted in What Else: About Life | 6 Comments

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.

 

Posted in What Else: About Life | Tagged | 4 Comments

The Space Ship Has Landed

Life with Mom

In her good-natured way, my mother tells me every day that she’s homeless.  I stopped telling her that she’s not homeless because it seems to upset her because she thinks that I don’t believe her or I’m not taking her seriously.  So, I now say that I know she’s homeless and that if she doesn’t have any place to stay “tonight”, she’s welcomed to stay with us.  She looks relieved every time I tell her this and just wants me to clear it with my husband.  So, I ask Brian if it’s OK that she stay with us each night, and he says only if her cat can stay too.  She gets that this is a joke and we all laugh.   My bother’s girlfriend heard me ask Brian one night if my mother could stay, and she was mortified that I actually “had” to ask him.  The girlfriend didn’t hear my mother ask me to clear it with Brian, and wasn’t aware that I really have to do this for Mom to be satisfied because she thinks she’s imposing.

She also asks quite frequently how we got here.  Sometimes I tell her we arrived by bus, train, or car, but the other night I told her we arrived by space ship, and that the space ship landed in the side yard.  She laughed and can’t figure out why I don’t give her a serious answer.    Often, I try to amuse myself while also trying to make her smile.  It works most of the time.

Sometimes, she just doesn’t know who I am.  She often asks me if I know Brian Sikorski (my husband) and when I tell her I’m married to him, she’s shocked because she thinks his wife is someone else.  She calls his wife Diane Sikorski. (I never changed my name when we got married 22 years ago).

Just last night, she told me that Diane Sikorski was married to Brian Sikorski.  So, to amuse myself, I began this conversation:

Me:  That Diane Sikorski must be one heck of a gal!

Mom:  She’s OK.

Me:  Is she beautiful?

Mom:  No…not really.  (Hahahaha…laugh to myself)

Me:  Is she smart?

Mom:  Kind of.  (Laugh again to myself)

Me:  Is she funny?

Mom:  Not especially.  (I couldn’t hold it in any longer…laughed out loud!)

Me:   That Brian Sikorski didn’t marry too well, did he?

The conversation ended because I couldn’t stop laughing.  She laughed along.

So, next time the space ship lands, I’m going to personally put Diane Sikorski on it and send her to the moon.

She needs a little vacation any way.

Mom and her big smile about a month ago.

 

Posted in Life with Mom | 4 Comments

Fellow Travelers

“Life with Mom and Living with Lymphoma”

I headed out to an Alzheimer’s Caregiver’s conference last week and didn’t get very far.  First, I was late leaving my house because my mother was having a mini crisis thinking that her teeth were disintegrating. I reassured her that they weren’t after conducting a thorough assessment (at least I made her think it was a legit assessment).  She was finally satisfied that she would be able to chew her lunch that day.  I left and made it about 3/10 of a mile away when my car broke down.  I ditched it and walked home.   On my way home, I had to walk past the plot of land where I spent nine years of my early childhood.   I stopped and looked at the enormous tree that was the focal point of our front yard and was flooded with memories of easier days filled with hide-and-seek, pogo sticks, cartwheels, and bug and butterfly hunting.  I got back home, grabbed another car and went on to my conference.  When I got there, I couldn’t find a parking spot for about 10 minutes (at least it felt like 10 minutes).  I finally found one and actually got there in plenty of time to hear the key-note speaker.

The day was filled with people who are directly touched by a loved one with dementia.  Some are daughters and sons, some are spouses, and some are brothers and sisters.  Some are dealing with their own health issues, or raising children, or live too far away to feel helpful.  All of us are trying to learn more about the cognitive diseases that we’re dealing with, how to best help the person with dementia, and probably most importantly, how to help ourselves in these times of enormous stress.

These last few weeks have been especially difficult for me because my mother seems to be ailing from issue(s) other than dementia.  In other words, there seems to be something physically/medically going on with her.  I’ve had her to see her doctor three times in two weeks and aside from a UTI (which, by the way, can completely throw a person with dementia off), nothing else was discovered.  She continued on with her increased confusion and fatigue for a few weeks after antibiotic treatment.

Yesterday, she told me that she was homeless and didn’t know where she would sleep that night.  She has mentioned this multiple times over the last few weeks, and although I know that reality orientation doesn’t work and shouldn’t be used, I do try to assure her that she lives here with me and she’s not homeless.  Yesterday, instead of trying to reassure her, I attempted to distract her by asking how in the world she ever raised five kids with the amount of worrying she does.  She told me that raising the kids wasn’t half as bad as the last 2 weeks she’s spent with me!   I never expected such an answer and laughed out loud.  She began laughing too, reached for my hand, pulled me down to her level, kissed me on the cheek, and told me she loved me.  I’m not sure what I’ll say next time she tells me she’s homeless, but I hope I have the wisdom and the creativity to distract her and turn it in to another moment that we can both enjoy.

The end of the conference was a 45 minute presentation from Dr. Joel Goodman, the founder of The Humor Project.  He told us about how he and his wife moved eight hours away from their home to be with his mother who had dementia.   He emphasized the importance of humor for both caregivers and the person with dementia, and to look for the little things that are in front of each of us every day that can be funny.   I was proud of myself when thinking of how my morning started.  I walked in to the building thinking about my mother’s teeth, my broken down car, and my difficulty finding a parking spot, and laughed to myself.  I realize now, that with a life threatening disease like lymphoma, and caregiving responsibilities for my mother, that these little things are not only things that shouldn’t rob you of peace of mind, but can also be hilarious.  My mother’s teeth are really intact, my car is being fixed, and I gained so much from being at this conference.

There was really never anything to worry or stress about.

Dr. Goodman left us with a philosophical and enlightening thought.  He wrote these words on newsprint for all to see, and asked us what we saw.   Because this is typed, I’m limited in the way I can present this, but he wrote it in such a way that people interpreted it differently.  He wrote:

Opportunity is nowhere.  You could read it like that, or like this:

Opportunity is now here.

The latter is the message I saw and hope to never forget.

Flowers from my old garden. Although there is still snow on the ground, spring is in the air. Planting time is fast approaching. More opportunities for joy.

Posted in Life with Mom, What Else: About Life | Tagged , | 6 Comments