Over the rainbow…

I read awhile back, if you happen to be struck with dementia, the music that stays with you most, comes from around your 12th birthday. I love to say, I’ll be an old lady jamming to Led Zeppelin, Elton John and Queen music when/if that day arrives. But, if I’m being honest, the songs most likely to stay with me are from my parents era; specifically the ones Dad played on the piano and insisted I (horrible voice and all) sing along to.

“Tea for two or two for tea…” was one of my dad’s favorites to murder with my voice. Another was Born Free, the Perry Como favorite about a lion cub. My favorite song was Sentimental Journey, by Doris Day, primarily because I thought this was my mother’s favorite song. Whether this is true or not, no longer matters. These popular hits from the 1940’s, I fear, will be with me ’til the end of time—which really isn’t as bad as they may have seemed; when I was twelve. Over the Rainbow, by Judy Garland has always been my Dad’s number one, second to none song (probably from the first time he heard/saw Judy in the Wizard of Oz, in 1939) In his later years, he gravitated toward Nat King Cole’s discography, most notably, The Very Thought of You (somewhere on YouTube or Facebook there’s a version with my brothers singing along with Dad, honorably, murdering the song). In the final days of his life, he would listen to Nat’s beautiful voice incessantly. On my last Saturday with him, I worked hard to find other music from his era to share and listen to, before eventually coming back to Nat King Cole.

Yet, his heart always belonged to Judy’s, Over the Rainbow. When the time came to plan his funeral mass, we knew we had to somehow incorporate the song. Thankfully, my niece Evelyn Maloney, opened the service, beautifully singing Over the Rainbow in his honor, while her cousin Benjamin Maloney accompanied her on the piano.

“Somewhere over the rainbow, way up high, there’s a land that I heard of once in a lullaby. Somewhere, over the rainbow, skies are blue, And the dreams that you dare to dream Really do come true

Someday I’ll wish upon a star And wake up where the clouds are far behind me Where troubles melt like lemon drops Away above the chimney tops That’s where you’ll find me

Somewhere, over the rainbow, bluebirds fly. Birds fly over the rainbow why, oh why can’t I? If happy little bluebirds fly Beyond the rainbow, Why, oh, why can’t I?

As Evelyn finished up the song and the tears that I tried to hold back fell, I realized, my Dad was now a happy little bluebird, free to fly over and beyond the rainbow. His troubles, like lemon drops, melted away. Free of earthly confines, his dreams of being reunited with his parents, sisters and not least of all, his wife, my mom, Joyce; came true.

****

Somewhere Over the Rainbow – The Wizard of Oz (1/8) Movie CLIP (1939) HD – YouTube

the nightingale…

“Besides the garden wall, When stars are bright, You are in my arms
The nightingale tells his fairytale, Of paradise where roses grew” Stardust by Nat King Cole

As many of you know, my hobby of taking bird photographs has grown to consume most of my free time. The hobby is a win win for me, of sorts. I can share my photographs not only on Facebook and Twitter, but also with those I join in companionship and even, on occasion, invite them along on my birding excursions. As such, I have way too many bird photographs clogging up memory cards and external hard drives. The joke being, someday, my kids will go through all of these drives looking for photographs of themselves throughout their lifetime and complain, “Why are there so many pictures of damn birds (and not of us)?

My Dad used to tell me, “Oh, you should write a book about birds…” and I would gush, then reply, “I really don’t know much about them…” which is true by the way, but he wouldn’t hear my reply, instead reinforce his idea, “These photos deserve to be seen–in a book.” The last time he broached this subject was the Tuesday before he died. I told him, “Instead of a book, how about I make you a calendar for next year…” He nodded and said, he’d like one, but, “Don’t give up the idea of the book!”

There are so many emotions that run through you when your parent passes away. In the early evening on June 12th, about 15 hours after my father died, I sat on my front stoop talking with my daughter, about the many facets life holds. “How are you?” she asked. “I’m okay…” I replied then quickly added. “This is different from when my mom passed away. Then I was pissed and upset and just plain mad. I wasn’t ready for her to leave yet. Eighty-two may sound old, but in many ways it’s not.” “How old is Grammy?” She asked. “Your Grammy Lewis is eighty-four…” I replied, referring to her father’s mother. Getting a sense of the age, she nodded. “In any case, my mom had been in pain, most of her adult life and though she learned to “live with it”, she struggled her final year and was tired of the fight. When the cancer diagnosis came in, it came almost as a relief. Not that she wasn’t scared or sad-mind you. But, she was tired and her faith in God, helped her accept her fate.

“But I wasn’t ready to let her go… I came home the night of her funeral and screamed and cried on this front stoop, not wanting to enter the house because doing so, closed the door on the day, on her life. Entering our house meant my mom was no longer here and I would have to learn to live with it… and I didn’t want to” I explained. “Now fifteen years later, my Dad followed his love and the feeling is one of relief and gratefulness he went peacefully in his sleep. No reason to scream, yell, or curse God for taking him.”

Of course, this hasn’t stopped me from crying, or feeling heartbroken over the loss of this great man in my life. But, I do not feel cheated either. God graced me with a wonderful, kind and loving father for fifty-seven years…one who checked off every box on his to do list; before he died.–even attending his own send off party.

He even mustered up the strength to comfort and console me, the day before he died.

*****

Every other Saturday for the past two years, I spent the day with my Dad. Somedays he would listen to his echo device while making rosaries and sing along. But in the last six months, that device became more like a best friend, playing his beloved music all day long. Toward the end, he became Nat King Cole’s greatest fan, listening to his music almost exclusively nonstop. Whenever the the song Stardust would end, he would ask, “Marsha, have you ever photographed a Nightingale?” “No, they are an old world bird, meaning, they strictly live in Europe”, I would reply. “I wonder what they sound like?” he would muse.

****

Over the years, I have found many videos of birds we both could enjoy together, particularly the ones made to entertain cats. When he began to muse about the Nightingale, I didn’t have to look far to find the perfect video for him. We both sat, mesmerized; listening and sharing in the delight of hearing the beautiful song from the Nightingale bird over and over again.

Singing nightingale. The best bird song. – YouTube

“Besides the garden wall, When stars are bright, You are in my arms
The nightingale tells his fairytale, Of paradise where roses grew” -Stardust by Nat King Cole

100 years…

Shortly after midnight, May 26, 2021, my younger brother Dan sent everyone in our family a group text, the Five for Fighting video, “100 years” along with the tag line, “He made it!!” My dad reached his goal to live to 100 years and we couldn’t have been more proud of his accomplishment. We all felt very blessed to see him reach this age and celebrate him accordingly. Little did we know, a short seventeen days later we celebrated his long life by saying goodbye to the best man, any of us will ever know. One hundred years and seventeen days to be exact.

****

I began writing this blog, shortly following my Dad’s birthday, May 26th, to celebrate and honor his reaching the century mark. The year before, one of his overnight caregiver’s, Louise, tried to arrange a motorcycle parade down his street, in celebration of turning ninety-nine. My sister Ann, casually mentioned the idea to a friend, who happened to be a veteran and the next thing we knew, the Veteran’s motorcycle motorcade led the parade.

This year, the Veteran’s group advertised the parade and invited the local media to come join the celebration too.Local WW II veteran celebrates a century around the sun in a big way (13abc.com)

While my dad loved the attention of turning 100, he was not a flashy fellow. When he came home from WW2, the last thing he wanted to do was celebrate his war service. In fact, like many of the men in the Greatest Generation, he chose not to talk about his experiences, preferring to keep that aspect of hell to himself. In the months leading up to his birthday, he suffered some PTSD, recalling some of his greatest fears and anguish from that era of his life.

But he loved the Veterans and the parade that came down the street. He enjoyed meeting many of the riders and did his best to impart wisdom to all who would listen… “Live your faith, love your family and your nation…” In addition to the Veterans, the parade brought political dignitaries. The mayor, Wade Kapszukiewicz presented him, the key to the city and our House Rep, Marcy Kaptur, gave him a flag that flew over the Capital building in DC, along with a few other mementoes. And, what’s a parade without local media? All three local television networks covered the parade and while looking to fill out their story, interviewed the veterans and some family members too. One station interviewed my nephew Jonathan, who mentioned that one of Dad’s pearls of wisdom included, Costco vanilla ice cream being the best ice cream on the planet.

A week later, a sell unit (2 1/2 gallons) of Costco ice cream arrived, wishing him a very happy birthday–from the vice president of Costco.

****

Over the years, many people would ask me “How’s your dad doing?” and my usual stock answers included, “Fine”, “Good”, “Holding his own…” In the last six months leading up to his birthday, my reply changed to “Ninety-nine has not been fine.”

But oh, one hundred, for seventeen days was wonderful.

.

There once was a girl, from Canyon, TX…

I have been blessed to have had, incredible conversations with two women, on the verge of their deaths. One was my mother and I’ve blogged about that conversation in the past. The other occurred August 17th, with my friend, Merrie Lib Kendrick, who passed away the following day. Seven years prior, I was hired by her children, to help ensure their mother would be safe and able to stay in her own home as she aged. When I began, Merrie was two months shy of her ninety-first birthday.

Who could have foreseen this would last seven, wonderful years?

Merrie began to show signs of significant decline two weeks prior to her death. Then she would rally, then scare me, then rally, then scare Samantha (her other aid) then rally again. I joked with her daughter, I felt like we were on a “Merrie-go-round”. But, my final two days with her, while not how I would have preferred to spend them, were still filled with laughs, hopes and then sadly, tears. But she still made me laugh, because Merrie Lib was a cheerful person who even while dying, made sure we were both smiling.

****

The night before she died, I asked my sister in law, Jean, to help me give Merrie Lib a bath because the day before I did a lousy job of cleaning her up, following an accident. Merrie Lib agreed, until bath time arrived, then she claimed she was too tired. Honestly, the way she had been breathing, she wasn’t trying to get out of the bath, (well maybe she was), she truly was too tired. But, I talked her into letting us clean her up by saying, “If you let us get you clean, I’ll tell you a bedtime story. She knew I wasn’t going to let this go, so she agreed, adding, “I wish you would…”

When I first began working with Merrie, her usual bedtime ritual had been to give herself a sponge bath, then brush her teeth, go to bed to read or do crossword puzzles, until she was too sleepy to continue. Over the years, this habit of staying awake late in the evening faded. Once we finished her bath, I asked, “Do you want to brush your teeth?” She responded, “I’m too tired, I’ll do that later…” So we helped her to the bedroom and as she climbed into bed, I said, “I’ll be back in a bit to tell you that story…” Then walked downstairs with Jean, to do some laundry and walk her out.

Her daughter Cathy and I were talking via text and for a moment there, a decision had to be made, send Merrie Lib to the hospital-alone, or stay home. We both held reservations, because, I could not stay the night. In the morning, I was moving my daughter to college for her freshmen year and due to the Covid-19 pandemic restrictions, Merrie Lib would have been sent to a hospital alone, where she might not have understood what was happening to her. In the meantime, I kept Samantha abreast of the situation. In an act of desperation, I think on both Cathy and I decided to take another pulse/oxygen level score from her, to see if she were better off staying home until the morning.

While attempting to take her pulse and oxygen level–which had been very weak, the past two days, I accidentally woke Merrie and though she looked very weak and tired, nonetheless, she remained awake and talkative.

*****

Have you ever been a part of something where you felt the hands of God intervened? I’ve participated in many Christ centered retreats over the years and thought I had. But, that evening, I know Jesus assuaged all our fears with that pulse/ox reading. Every measurement I had taken earlier during the day showed a decreasing oxygen level and pulse rate. Now, at this crucial moment, she scored a 91 heart and 67 pulse, which not only fell within normal rhythm, but had also been the best, all day. In all honesty, I believe God stepped in and said, “Stop worrying, she’s safe in my arms now…” to which Cathy came to the same conclusion and Merrie remained home.

*****

Maybe because I had had that last conversation with my mother, or maybe the Holy Spirit took over or maybe a combination of the two, I decided to record Merrie Lib sending out some love and a prayer to Cathy via some voice texts. Once those were sent off, I said, “Now, I owe you that bedtime story… ” and thus began our final conversation.

“There once was a girl from Canyon, TX, who wanted to be a rodeo star…” I began. Her eyes were closed, but she was amused because she added, “Well that would be kind of difficult, because she’s afraid of horses…” So I added amended the story, “There once was a girl from Canyon, TX, who wanted to be a rodeo star, but sadly, was afraid of horses…” Then Merrie interrupted me again and said, “Though, there is a picture somewhere here of me sitting atop a horse.” I leaned in and asked, “Did you lose a bet?” and she chuckled then replied “Maybe..

*****

During my first interview with the family for this job, Merrie Lib was resigned to needing the help saying, “I’m of the age that if I’m ever in an automobile accident, I’ll be the one at fault.” Her daughter had also made it clear, her name was Mrs. Kendrick and this was how I was to address her. I began coming to see her twice a week and within the first month, she corrected me saying, “My name is Merrie, not Mrs.” so from then on, she became Merrie, then later, Merrie Lib to me.

*****

“There once was a girl from Canyon, TX who wanted to be a rodeo star, but was afraid of horses–even though, she had lost a bet and got her photo taken atop of one…” “That’s better…” she replied. “Being afraid of horses curtailed her want for the rodeo, so she pursued another route to finding happiness. After attending the demonstration school on the campus of West Texas’ college campus for ten of her twelve primary school years…” I continued, before she interrupted me again. “Don’t forget, the William F Ray school…” She said and I corrected, adding, “with the exception of her 2nd grade school year in Chicago, while her father pursued his masters degree…”

She smiled in approval.

“…She entered into the dietician program and with the exception of a few classes at other colleges, and an internship at a Jewish hospital in New Jersey, she received her Dietician Degree”. “Don’t forget at the hospital she was as much an oddity to them, as they were to her…” She added, no longer listening to this as a bedtime story, but rather as an episode of “This is your life”; the abridged version. I continued, “Her love for her country, drove her to join the army as a second Lieutenant, and was stationed in the Podunk town of Clinton, IA as a dietician, where she attended to wounded soldiers recovering from their war experiences. It was here, in this one-horse town, where she met the love of her life, her “Sugar” if you will..” Merrie smiled at the reference. “After a brief romance, they married, eventually moving to his hometown of Toledo, OH and while Clinton, IA on first glance held no promise for her, the town eventually found a place in her heart, for bringing her and Fred together…” “Yes, you’ve got that right,” she said.

I could see she was growing more tired, so I began to wrap up the story…

Once in Toledo, together, they prepared for their future, first welcoming Michael, nine months and one day following their wedding date, then Dion ten months later, then Kevin a year after that… then a year or two after that, their darling daughter Catherine.” “Yes…” she interjected “And though she never became the rodeo star of her young dreams, she did find happiness and love, with her family and all the many friends she made throughout her long and beautiful life..” I finished.

She nodded slightly, looking like she was falling back asleep. I rubbed her shoulder, to give her a kind of hug, then added, “Merrie Lib, I’m so blessed to be one of those friends, I love you…” She perked up and replied, “Thank you! A bushel and a peck and a hug around your neck too…mmm” Holding back the tears, I said, “Now, you get some rest, I’ll see you later”, then stood, turned off her bedroom light and walked out of her bedroom for the last time.

******

The decision to have Merrie remain home was made easier when Samantha volunteered to stay with her for a few hours that evening, then return very early in the morning. To be honest, I’ve never been more grateful. I was spent. The next day, after my daughter was moved into her dorm, I made plans to relive Samantha and spend the night, so Merrie wouldn’t be left alone. But, she had other plans.

*****

This month alone, I’ve lost five people I’ve known and cared about, due to varying forms of illness, but none as close as Merrie Lib. What started out as employment seven years ago, turned into true admiration and love for one another. Every morning, when she greeted me at her door, I’d say, “Good Morning Darlin’, how are you?” and she’d reply, pulling me into a side hug, “We are all in our places with sunshine smiling faces…” then laugh, adding, “Much as usual, how are you?” Then we’d sit and discuss much the same as we discussed the day before. It really didn’t matter, we were both in our places with smiles on our faces.

Everybody’s girl….

When I picked my doll up from school (probably for the last time) in early March, I thought about writing this blog and naming it, “My Sharona-Corona Virus”. But when I sat down to start, I fatefully scrolled through my Facebook page first and found three different friends had thought of that name too. I guess I need to find a different song for my hand washing playlist.

Any suggestions?

Last night I began working on a 750 pc puzzle, hoping to entice other family members to help me. But alas, they were busy with their own isolation plans. The one thing I miss the most, since my cancer interlude last year, is music. I can’t seem to find any joy in new songs, old songs, new genres, classical, instrumentals… nothing.

But sitting in silence is boring and while I do enjoy the Moth radio show or GaslitNation podcasts (among many others), after a while all that talking gives me a headache. So, while I searched for puzzle edge pieces, I listened to some old music stored in my computer’s library and came across this song, Everybody’s girl, By Jen Foster and her title seemed to fit. The lyrics… not so much.

I am a child of God

I am a strong female

I am a gay ally

I am catholic

I am happily, a companion to the elderly

I am a mom

I am a wife

I am a daughter

I am a friend…

I am a fan girl…

I am a sister….

A cancer survivor…

A sometime blog writer with lousy editing skills…

See….

I am everybody’s gal….

Be honest, are you really adhering to the quarantine order?

I’m not, I’m essential!! Makes me sound kinda special, huh?

Mrs. K’s daughter lives in California, so she has no one here to keep her safe except me an another aid-who has promised me she’s safe. I trust her, tho I still worry one of us will interact with the wrong fucker that dooms us all. Her daughter informed me the other day, if she absolutely needed to come to Ohio, it would take two days to fly in AND then she would have to quarantine for two weeks at a hotel, before she could even see her.

In addition, I assist my father and another Mrs. K, all the while, trying my best not to cause more harm than good.

Yet the real crazy thing, is seeing the amount of other “essential” personnel on the roadways and or inside Kroger’s shopping, standing next to one another and acting as if this is just another day in the life.

********

For the last year, I’ve ignored everything and concentrated on surviving cancer. I sit here and think God wouldn’t have had me defeat cancer, only to die by this new BS… right? Then again, free will is and always will be, the downfall of man.

********

Thursday, I woke up early and drove to the Ottawa National Wildlife Refuge and utilized their hiking trails. All told, a beautiful day unfolded before me and I walked about 5 miles. Looking out over the various pools, I saw Lesser Scaup, Mute Swans, and Canada Geese among many others. What I did not see, with much frequency anyway, were humans. When I arrived, there were four cars in the parking lot (including mine) which, as you might guess, allowed for wide open spaces between me and the other guests. By the time I left, there were about fifteen cars… plenty of people trying to get past this quarantine by exploring nature.

I kept thinking to myself, every time I lifted my camera to snap a photograph, the birds just were not cooperating with the 6’ social distancing order. Funny how envy crept in as well.

After a few short hours, I came back to this hyper world, and went back to wondering if I was following every rule to the letter? Was I really behaving as hyper careful as I’m supposed to, or have I made one mistake that will chuck me into the fuck it all, “Geronimo-ooo!!!” bin? I mean, last year, when I had a pick line in my arm, I became a germaphobe and took serious steps to keep that line as sterile as sterile can be. Now the goal is to keep my overall body as sterile as sterile can be, and for the life of me, I can’t stop touching my face.

Why????

********

This afternoon, my siblings and I attempted to do a zoom conference call. I was spending the day with my dad and used my IPad, to allow him to participate too. His only complaint? He couldn’t hear a damn thing anyone said. I informed, “No one could hear what was being said either they were all too busy talking at once…” My brother Tom likened the experience to chaotic Christmas Eve, where we’re all standing in the kitchen talking over everyone else.” Despite all that, the experiment was a success. Seeing everyone again, presumably healthy and well, was a huge blessing.

I notified my son Dylan, all these grocery stores were hiring stockers and Shipt-type clerks to which he reminded, “You are aware we are experiencing a pandemic, right?” I nodded. “And you want me to expose myself to the virus?” He added. “Not particularly, but I would like you to find a job and this seems like it’s easy pickings right now…” I said. “If I didn’t know better, I’d think you are trying to kill me…” He returned, before going back to ignoring me, per his norm.

Yet, there is some validity in what he said. Take for instance my doll, who works for Target and has been getting plenty of work hours, due to the virus. Will she run into the wrong person during a shift and bring it home to me? Will all our measures to stop the virus from coming into our home fail regardless?

Only time will tell I suppose.

But to dwell on the “What if’s” is not productive for me or anyone else, for that matter. Living our daily (sometimes boring, quarantined) lives is our only answer. And for all the worrying and wondering this dumb virus has brought into my life, I cannot allow it to defeat my spirit—and neither should you.

I mean seriously, there are tons and tons of memes and jokes out there to make us laugh through this and as Reader’s Digest has known since time immortal, laughter really is the best medicine.

life is but a dream..

This past Tuesday, I received two pieces of good news. First, Dr. Hottie’s office sent me message informing me the MRI was “negative for issues“.

Whew!!

Then I received mail from my insurance company that said upon further review, they approved the need for the MRI and would cover 80% of the cost.

Double WHEW!!

Stay the course Marsha Mary, stay the course.  Today, largely due to your continued prayers for me, my path is clearer and the financial burden is lessened. Thank you!!

*****

Ten years ago this month, I began writing the Mean Mommy’s Memoir, as a way to chronicle my children’s lives. What started as a joke, because of my daughter’s dramatic reaction to a tooth ache in the school nurse’s office, quickly changed to become my treasure box, filled with memories and stories, good and bad, about my babies growing up into adulthood.

I used to pretend the blog blew up virally, not because my children’s antics were so unique or my wit in describing them, was special. Rather, because some of the stories contained herein are quite funny and mostly true. While doing some boring chore, like cleaning the kitchen; I’d imagine being interviewed an asked, “Why is this blog is so popular?” My answer would always be the same, “Because the dynamic between kids and parents is inherently funny and should be shared and celebrated”. Of course, many of the comedies we watch on television, revolve around family, so nothing new there. But my kids are and always will be special to me, so why shouldn’t some of my stories win over others (read: of Kitty and the doll)?

I tried my best to write every day and largely succeeded for about eight years, until the boy asked to no longer be included. My doll, never gave me the same request, but over time, I stopped. Not because she was less entertaining, rather, because my overall life became busier and I lost focus on my writing.

That is until, last year’s health problems took over the space.

There have been many changes in our lives over the past ten years and most striking to me is how fast everything went–even when some years seemed to last forever. I look back now and wish I had a way of recording every nuance, every giggle, every tear we shared. What stands out in memories as great moments to some, may be lost to others. I’m very thankful I had a blog to chronicle a some good days and a few awful ones. But overall to prove, love does conquer all–especially where tween and teenagers are concerned.

*****

Happy Birthday Doll…. at eighteen, you may be an adult in the eyes of the law, but you will always and forever be my baby doll.

 

 

 

 

the sixty thousand (or $600) dollar question…

“Tell me what I should do?” I said into my iPhone receiver. “Should I stay or should I go?” 

******

One year ago (Feb. 8), I slipped on some ice and did a complete “alley-oop” fall: feet flyin’ up in the air, while the rest of me went down: first-back, second-back of head to concrete connection. Honestly, what stands out most to me about that black ice episode, is the thought that ran through my head at the time…”Don’t let your head hit the…. Damn”. As we all know now, that fall touched off my crazy and intense year and journey through cancer. Crazy how even now, everything remains so crystal clear. It’s as if that knock on the head is what caused the tumor to wake up saying, “Hey, tried that benign route but now I’m gonna be crabby…” As much as  I’d love to blame the fall on why a usually benign salivary gland tumor went rogue, I’ll offer a more ethereal idea, that my mother (in heaven), put that black ice in my path, tempting me to pay closer attention to the little bump growing aside the left side of my jaw, in front of my left ear. 

******

A couple of weeks ago, I wrote a blog condemning my insurance company’s reserve to pay for an MRI, ahead of my quarterly check up with my surgeon. Regardless, I decided to see my surgeon  and was told the reason the insurance company declined the request was because my last MRI was merely four months ago. “How could anything go wrong in four months??”  During the appointment, my doctor asked if I was experiencing any pain and I replied, “No, nothing sustained like last year, but, I do have shots of pain and flutters across my face from time to time…” I explained. “When did you last experience this pain?” He asked and I replied, “This morning, I had shooting pain my left ear…” I explained and he replied, “We’re going to re-order that MRI because of the pain and flutters…” he said, then motioned to his assistant to do just that. “We can’t be sure this is strictly nerve pain, unless we can see what’s happening in there. Your tumor’s margins were close and we took extreme caution during removal and follow up treatments. But you never know, without concrete evidence, if we got everything..” 

A few minutes later, as I prepared to drive home, I had new date for an MRI and a new hope my insurance company would change their mind and help cover the cost.

******

Shortly after the original diagnosis, my insurance company assigned me a patient advocate I believe, so I had someone to complain to, even though they had little power to change a decision. Every few weeks or so I’d receive a phone call, asking how my treatment was going and if I had any questions. My advocate was a former oncology nurse, who, presumably knew how to keep someone like me from freaking out, when insurance struggled to agree with a doctor’s prognosis. As the treatments came to an end, the phone calls became less frequent until we decided to end our near year long conversation. “I’d rather we continued to talk until after my MRI at the end of January,” I told her and she agreed. Once the results came in and if the results were favorable, we’d talk about my future and then most likely, end our affiliation.

This past Wednesday, as I walked out of a Barnes and Noble in Columbus, OH, I answered the phone and Tina, my patient advocate from the insurance company asked me how the MRI went. “Well, it didn’t. The insurance canceled the test apparently because it ocurred too soon, following the last one. But, my doctor ordered an additional one to take place this afternoon. I haven’t heard whether it’s been approved or not, so I’m not sure what I’m supposed to do…” I replied. “Do you want me to connect you with someone who can tell you if it’s been approved?” She asked and I agreed. After a moment another voice came across, asked a few questions, then asked me to wait while he researched the issue. When he came back he said, “The current request is under “Nurse Reveiw” and won’t be decided until end of business today… If you have the MRI and we disagree with the reason, you will be on the hook for the full cost, aproximately, $600. If you wait for a decision, we may cover 80% of that cost”. 

ah, the crux of the matter… 

I called my husband Mike, and asked, “Tell me what I should do?” I said into my iPhone receiver. “Should I stay or should I go?” “Wait!! Start over, what?” My husband replied.

“Do I accept the $600 cost or wait to hear if it’s been approved (pay only 20%)? Do I keep the appointment or drive home? End of business in the insurance world is 5 pm EST. My MRI appt is set for 6 pm. So I Stay in Columbus and risk paying the full amount or go home and continue worrying about what the MRI might find, if given the chance?”

**** 

My cousin Fred, who years ago, was given a 1 in 4 chance of surviving throat cancer visited with me a few months ago, offering encouragement and support, signed me up with an Ann Arbor based support group for head and neck cancers.  This months’ headline is “The Financial  Burden of Head and Neck Cancer” which according to the US Medical Expenditure Panel Survey data, head and neck cancer patients had significantly higher annual medical costs, more than $2000 extra costs, leading also to high out of pocket expenses than patients with other types of cancer. And, of course my reply upon reading the article was, “Go big or go… %&$!@# hell!”

******

Of course there are pros and cons of both circumstances. If I follow the insurance rules, I’m not out the additional $600 that won’t be applied to my deductible. I’d simply have to wait until September to have the doctors tell me all is clear. But, if I follow insurance rules, and something crops up, am I’m screwed? Will saving $600 mean anything if I lose my life waiting? Is peace of mind worth $600 that we don’t have?

‘Tell me what to do…” I said into my iPhone receiver, almost desperate. I knew what I wanted, but I needed a voice of reason to help me figure this out. “You know, if this was a $60,000 question, I might be more reticent. But $600 for peace of mind seems pretty cheap? Go for it. Have the MRI and we’ll see if peace of mind can be bought for that amount.” Mike said through the receiver. 

I don’t think I’ve ever loved this man more, than in that moment. It’s not the money, well for me it is, but it’s not. It’s the wondering… and Mike just gave me the green light to continue moving forward, not looking over my shoulder and wondering if the road I now travel is filled with horrendous traps.

***

I had the MRI on Wednesday, regardless what my insurance decided. $600 in installments doesn’t hurt as much right? So now,  I’m anxiously awaiting my peace of mind. I have to say though, for the first time in my life, I was actually proactive with my health; opening my umbrella to stop the shit from raining on my parade…

 

 

 

 

anniversaries and pitfalls….

Some anniversary dates are better than others…

October 21st of each year marks the day Mike and I became engaged. We were married a year and a half later and this May, we’ll celebrate 30 years of marriage. Though neither one of us can recall the date we met or went on our official first date, we somehow have managed to remember these other two.

December 29th marks the date of my mother’s death in 2005, which set up the single worst day and week of my life (cancer included). The first year following her death, each day was hard to walk without her in my life. Mother’s day…totally sucked and I am a mother. November 7th, her birthday was actually a good day in that her first great grandchild was born, two weeks early no less. We figured she must have had a hand in his arriving so early. Then the month of December arrived and every day seemed to move as slow as molasses. It was as if each day couldn’t get over fast enough; something akin to someone ripping a Band-Aid off slowly and painfully.

Thankfully, subsequent years became easier to traverse, not because I missed Mom less mind you, but rather because I knew she would not want me swallowed up in a ball of grief. Instead she wanted me to be a good mother and to love my children and keep moving forward… so I did.

Which brings me to today…

Last year at this time, I was blissfully ignorant of the bump at the back of my jaw, in front of my left ear. Oh I knew it was there and was becoming more aware with each passing day.  But, I had no idea what kind of future that damn thing had in store for me. A year removed and I’m left looking back at my many ups and downs and I’m not sure how I’m supposed to feel.

Take for instance… If you were to approach me on the street and ask, “Marsha, how are you?” I’d probably respond, “I am well..” because I am. I am well, in so many regards. I feel good (though I need to eat better and lose some weight), I’m looking good ( eye of the beholder, baby) and I really have no complaints (say again?). Plus, I feel so darned blessed by all the prayers that have been said for me, how can I not be well?

Yet, there is always something lingering just underneath the surface…

*****

For the past month I’ve been preparing myself for an MRI and doctor follow-up down at OSU on Friday (24th) and trying to my best to stay out of my head, while doing so. It’s not because I don’t like MRI’s or am afraid of the process. To the contrary, I was once admonished for falling asleep during an MRI and snoring-not remaining perfectly still. My fears I suppose, had more to do with what that MRI might find as opposed to actually taking the test.

Then, yesterday morning I received a call from informing me, my insurance company had put the kibosh on the MRI. Now my mind has gone from being worried by what the MRI might find to being pissed off that if something is coming back, I no longer have the luxury of early detection. According to the scheduler for the doctors office, I’ll be scheduled for an MRI in September, exactly one year since my last one and there is nothing the doctors nor I can say about it. My argument however, is how could the insurance company spend so much money on my care and recovery last year, yet squash a test (that I’ll help pay for out of pocket) that pins hopes on early detection?

You know, as worried as I may have been about what possibilities that MRI might have found, at least I’d have the information and a clear path forward, instead of one I now find myself walking, filled with unknowns, uncertainties and invisible traps, waiting for me to step into.

****

I guess, if you were to catch me on the street today and ask, “Marsha, how are you doing?” I’d probably still respond, “I’m well”, because as far as I know I am. But I’m also pissed and a little nervous about possible unknowns.

SIGH

Much like when my mom died, my family doesn’t need to see me swallowed and messed up by fear of the unknown. Like I’ve done many times before, I only need to pick myself up and keep moving forward–praying that all those answered prayers continue to keep me safe.

Watch me go…

 

Thank you for your continued prayers,

 

Marsha

 

Holiday bliss

I feel compelled to tell all who will listen, that peace on earth is not so out of reach… if we can find grace, mercy and forgiveness, He has come to save, He is all of these, love is raining down on the world tonight, there’s a presence here I can tell, God is in us, God is for us, God is with us, Emmanuel…

-Casting Crowns

 

So this is…. New Years!?!

I tried to write a blog for Christmas, but finding time to think, let alone write during this busy season, has proven difficult. But I’m going to give this the old college try for New Year’s… so here goes…

It’ funny. As the holidays approached, I began to wonder which of the radiation therapists would be  working on Christmas and New Year’s day. Then I prayed for the unfortunates, who would be receiving treatment on these days. Then I said a prayer of thanksgiving, remembering my July 4th at OSU, which included “ten minutes of work” with techs Haley and John, before going out to dinner, and then retiring home to watch a Stranger Things marathon.  Yep, the only fireworks I was interested in was done by the radiation machine trying to zap any microscopic cancer cells they may have found. 

Anyways…

This is usually the blog where I look back over the year and lay out my plans for the future. Well we all know, the future is unwritten and unpredictable. Over the last thirty years, my brothers and I (party crasher) have gathered at our childhood home on New Year’s eve, to toast and be blessed that our father is still living,  to thank our ancestors for the love they instilled in their children who then passed it on to all of us. Of course it wouldn’t be much of a toast without well wishes to one another for a year of good health and happiness for a future filled with unlimited possibilities. Last year however, we couldn’t get our schedules to line up and instead, silently wished one another well and greeted the new year without our annual toast.

Well, we know how well this year turned out, right? Not wanting to jinx the new year too, I sent a pointed email to my brothers and insisted we get together this New Years Eve, so we could all toast to good health, thank our ancestors and enjoy the riches life has to offer… but most of all, to show and give lots of love to the world. Well, schedules are still skewed-end of the year deadlines and parties to attend among other fun stuff, tried to get in the way again. Seriously,  trying to wrangle all our schedules together is a little like herding kittens… 

*****

My friend Lynda gave me two bracelets the first time she visited me in the hospital, following surgery in April. One has the word “Blessed” carved into it, the other “Thankful”. I guess, if I were to really look back at this past year, those are the two words, that jump out at me the most.  

Much like Dickens’ A Christmas Carol, this year, while not being visited by three ghosts, I was visited by an ex pleomorphic, stage three tumor, who forced me to see my community, rely on prayers from so many others and see that I’m loved by many, many people. Of course, I should have known all this prior to that damn tumor coming into my life. This past year has been a very humbling experience… one I don’t recommend anyone else travel. Many of my friends who’ve undergone breast cancer treatments have told me, “This is the most transformative time of your life….God is showing you many things….pay attention”. 

*****

A text went out to my bros, to meet at dad’s around 5 pm to toast the new year and radio silence ensued. Whether the toast would include anyone more than my brother Bill and myself, was anyone’s guess. Yet, by 5:30 pm, our father’s kitchen was filled with laughter, as brothers and in-laws filled the room. My husband walked down the street bringing Dylan along too; which surprised me to no end. A short time later, my brother Dan mixed up some special sipping shots… Jameson Maloney’s… a mix of Jameson’s Irish Whiskey and Maloney’s Irish cream. Then we began toasting to our ancestors, to the year just past and the new decade set to begin.

We all took turns, from oldest to youngest and wouldn’t you know, I was the elephant in the room. Apparently, I put my family through hell this past year and heard many toasts referencing this. When it finally came to  me, I mentioned my regret that everyone focused too much on me. Yes, this past year was difficult, but by no means was I the only star in the show. So here is my toast for this new year, new decade… “If you find a lump, a bump, anything you can’t quite explain, don’t be like me and put it off until it begins to cause you pain. Get it checked out. I promise you, peace of mind wins out over the cost of the appointment. While I’m very thankful and blessed by all the prayers said on my behalf, living is a daily business. If you hear bad news, don’t let that steal your joys. Life is short enough and should be as joyful as possible. Plan on finding joy, even on difficult days and there is always a silver lining-you just have to be willing to look for one.

Then Dylan gave his toast, which floored the room. “I’ve noticed most of you focused on the year just past. But we are entering a new decade of life and my life has changed exponentially in the last two decades. These past ten years, I have grown from a child, to a man. I’ve witnessed my mother fight cancer and my grandmother change from being a strong intelligent woman to woman fighting dementia. Personally, I’ve changed from being the smartest kid in the room, to being lost among the sea of knowledge. I’m not the person I was ten years ago and ten years from now, I won’t be the same as today. In that, may these next ten years be filled with the riches of life and change be gradual, but good for all of us…” 

Yep, that’s my boy!

****

So, as we step into this new decade and look back at the year past, use rose colored glasses and skim over the difficult days. Focus only on the good ones. Please, do not harbor anger, hatred or disgust toward our fellow man. Pray for your enemies, pray for your friends and indoing so, may we look into the future with open hearts and hands, ready to receive all the blessings due to us. 

Above all, be kind to one another. You never know what a smile, a prayer, a hug or a shoulder to lean upon will do for another human being.

Thank you for all your prayers this past year… they have been answered.

Marsha 

 

 

 

 

 

 

 

 

 

\

 

 

 

 

Incredible act of ‘waking up’….

It’s crazy–take my word… it’s crazy.

I began using my new fangled, state of the art, “Dream machine” C-Pap-machine to curb my snoring and supposedly give me a good night’s rest. Though I was warned, the good nights rest may be in the waiting, as I become accustomed to the device mask. The first two nights, honestly I thought the mask’s purpose was to blow cold air in my face all night-to prevent me from snoring. After adjusting the back strap, I seemed to have fixed the issue and now cold air is pushed through my nostrils, into my sinuses, down my throat and out my mouth, forcing all snores to disappear.

All this would be wonderful if I hadn’t caught a nasty cold (with aid from cold air blowing in my face all night?) that moved into pneumonia. Every cough I had seemed to trigger an asthma attack, and well you can understand how fun this past week has been. After getting four hours of sleep over a 48 hour period, I made a doctor’s appointment, who put me on steroids and antibiotics, to help arrest this crap. Thankfully, as of today (Saturday, Dec. 14), while I still have a cough and am blowing out a lot of crud, I feel 100 percent better than I did on Tuesday–even though I’m still not at perfect health.

What’s interesting about all this is, everyone in my house caught the same cold. My husband’s voice became very deep and he struggled with sinus headaches. My doll, complained that her sinuses were at war with her senses and the boy, felt as though his throat was rejecting all swallowing. And while I had great advice for all of them, on how to get passed their colds, I glossed over their problems and became hyper focused on mine.

A moment of clarity came to me Friday, when I patted myself on the back for having the foresight to purchase a large block of facial tissues from Costco, a few days ahead of the cold outbreak–except I referred to the outbreak, as one that didn’t include any of them. “What great luck that I bought these tissues, before the pneumonia hit…” I said aloud to my husband. “Considering how many boxes of tissues I have gone through…” “Marsh, we all have been sick…” He commented. “So you say, but I had pneumonia…” I replied. “Diagnosed..” he responded with a terse voice, which gave me pause. “Wait, you mean I’m not the only one with this crappy illness?” I did not say aloud, but thought as it crashed down on me.

“When did I become so self centered”?

Well friends, let me tell you, it started back in March.

*****

One of the crazy things about this last year is, recovery. I’ve finally have gotten myself into a good frame of mind and belief system, that the bad is behind me and I’ll have clear skies from here on out. In addition, lately, I’ve felt “flutters” run across my left upper lip-reminiscent of the flutters that warned me of facial paralysis in March. Only now, they are telling me, the replacement nerves are beginning to “fire”. When coupled with my mouth exercises, I’m now able to open my mouth wider each day-making me feel more closer to “normal” than ever before. But then I caught a cold, that knocked me on my ass. Honestly, I haven’t had as bad a cold like this, in many, many years. So of course, it stands to reason, I convinced myself I became so sick, was not because this particular cold strain is freaking horrible, but rather was cancer related.  In fact, during my examination, I asked my doctor, “Could the veracity of this cold (being so nasty) be from my immune system not being back to normal yet?” She looked at me and said, “Marsha, this is cold and flu season. We’re seeing some really nasty bugs hit all kinds of people, not just those who’ve gone through cancer treatments this year…”

****

Okay, fair enough.

But I did go through cancer treatments which makes me more “fragile” than the rest of humanity, right? Right?!?

Wrong!

True or not, this is what cancer recovery has done to my psyche. 

******

You know, I thought I did a fairly good job of not putting too much emphasis on myself, even while I underwent treatment. I tried to stay out of my own head and simply focus on what needed to be done each day. So, I find this all fascinating and a bit surprising that after ten months of health scrutiny and focus from many others attentions, how easily I fell into this trap.

Recovering from cancer recovery, who knew there was such a thing?