Me & Mary's Health Issues

Dear Friends,

We have all experienced moments in which our life’s journey is forever changed. That day for us was June 1^st, 2022, when Mary was diagnosed with a “rare” autoimmune disease, Myasthenia Gravis (MG) for which there is no cure.

Below is a timeline starting on April 17^th, 2022, of what my amazing rockstar of a wife has experienced. She has handled her body misbehaving much better than I have.

All my best,

Sharon

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Around April 17^th, 2022, Easter holiday weekend, while visiting friends in New Hampshire, Mary mentioned her eyelid was drooping.

On May 13^th, 2022, Mary had a regularly scheduled appointment with her PCP. The drooping eyelid was getting worse. Her doctor, having previous experience with patients who were diagnosed with MG, ordered a blood-work panel specifically for MG. The doctor also ordered an MRI of the brain to rule out any brain damage that could display symptoms similar to the ocular version of MG.

On June 1^st, 2022, at an appointment with the neuro-ophthalmologist, Mary was positively diagnosed with MG. Mary’s symptoms included double vision and some eye drooping to start. It progressed to slurred speech, massive fatigue, and muscular weakness resulting in the inability to hold her head upright, or extend her arms to reach above her shoulders, or grasp things such as doorknobs.

On June 21^st, 2022, we traveled to NYC to see Dr. Susan Shin, a neurologist, at Mt. Sinai. We couldn’t get an appointment to see a neurologist here in Albany, NY until November 28^th. The clock was ticking, and she had no medication prescribed at that point. Her symptoms worsened every single day. While Mary was at Mt. Sinai, Dr. Shin ordered a CT scan (“to rule out a Thymoma”), and prescription to start Vyvgart (an intravenous medicine), and an oral medication called Pyridostigmine (a.k.a. Mestinon).

On July 7^th, 2022, Mary was diagnosed with a Thymoma, a “rare” form of cancerous tumor that develops on the thymus gland and occurs in about 400 MG cases per year. Mary’s tumor was large and sat precariously close to her heart and left lung. The necessary removal of this tumor required a high-risk surgery involving cracking open her chest (due to the size of the tumor), much like open-heart surgery.

On July 11^th, 2022, began the first of four weekly infusions done at our home, of a new drug called Vyvgart for the MG symptoms. (Each infusion cost $6,000 and was covered by Mary’s insurance, thank God).

On July 14^th, 2022, Mary met with her thoracic surgeon who would do the surgery to remove the Thymoma. He was so patient with us, as we had many questions regarding what was happening to Mary’s body.

On August1^st, 2022, Mary met with Cardiology for a pre-op sign off.

On August 8^th, 2002, Mary had a cardio-stress test from the August 1^st visit.

On August 10^th, 2022, Mary met with a local Neurologist here in Albany for a pre-op sign off.

On August 15^th, 2022, Mary had a Myasthenia Crisis (serious breathing issues) in which she ended up in the Emergency Department at St. Peter’s Hospital. After spending 18 hours in the ED, Mary was finally transferred to ICU. From there Mary went to a stepdown unit where she was administered a five-day course of IVIG (Intravenous Immunoglobulin). This is one of the treatment options for MG. She was released on August 19^th. When she came home, she was like a rag doll. It was hard to keep her upright. I was so afraid I was going to drop her.

From September 2^nd through September 6^th, 2022, Mary was administered IVIG (Intravenous Immunoglobulin) to build her up before surgery. Mary was given this five-day course at home.

On September 7^th, 2022, Mary underwent a 5-hour surgery. It entailed removing the tumor (which was the size of a baseball), a section of the pericardium which surrounds the heart, and a piece of her left lung. The tumor also wrapped itself around the left phrenic nerve, necessitating the severing of that nerve. The nerve controls that side of the diaphragm that operates the lungs. The right side of the diaphragm is now having to do double duty to make up for the left side being dormant.

On September 8^th, 2022, Mary was moved out of ICU into a step-down unit where she remained until her discharge.

On September 13^th, 2022, Mary came home. I was so very happy that she made it out of the hospital in one piece.

On September 15^th, 2022, Mary met with the Neurologist here in Albany for a follow-up on her Myasthenia symptoms since the surgery on the 7^th.

On September 20^th, 2022, the Visiting Nurse came to our home for a check-in regarding Mary’s recovery.

On September 26^th, 2022, Mary saw her surgeon. He was very pleased with how her body was recovery from her high-risk surgery.

On October 4^th, 2022, Mary met her Oncologist for the first time. He walked us through the protocol and procedures for her radiation treatments.

On October 11^th, 2022, Mary started outpatient physical therapy to address neck and back pain as part of the effects of the surgery, as well as movement restrictions to protect the sternum while it healed.

On October 19^th, 2022, she saw the Neurologist here in Albany for further follow-up.

On November 1^st, 2022, radiation measurements were made, and Mary got her permanent tattoos of five dots to identify the exact spot to radiate.

On November 2^nd, 2022, Mary started 33 radiation treatments. Microscopic cancer cells were left behind because of their proximity to the heart. As her surgeon said, if they’d taken that section, “We would have killed her.” We very much appreciated his wisdom and restraint. In an abundance of caution, the surgeon referred her to radiation oncology for a course of treatment to get those little buggers, before they could get organized into another tumor, though that would be some eight or more years in the making. The radiation treatments were definitely needed. One of the side effects could be some irritation to the throat since the radiation would touch the esophagus. Though the sore throats weren’t constant, liquid Lidocaine was prescribed to help with that symptom.

On November 7^th, 2022, Mary had an X-ray and saw her surgeon for another follow-up to see how her body was handling the healing process.

On November 21^st, 2022, Mary saw her PCP for her assessment of progress after Mary’s surgery.

On December 19^th, 2022, Mary finished her 33-radiation treatments. During those last five days the radiation dosage was amped up and concentrated on the key area. Up until then, Mary had little discomfort or side effects.

On December 21st, 2022, Mary started coughing and it was intense. Our concern with the upcoming Christmas holiday weekend was that she’d end up in the ED like she had in August. On Friday, December 23^rd, she had a Tele-med session with the PCP on-call. The doctor suspected bronchitis or possibly the flu. Mary was advised to take cough syrup and Mucinex. By that time, Mary ruled out COVID as she had already done two at-home tests. Both were negative.

On December 27^th, 2022, Mary met with her Cardiologist for the first time since the surgery for her regular yearly checkup.

On January 2^nd, 2023, Mary contacted the Oncologist on-call for the New Year’s holiday weekend because her cough was getting worse. His suggestion was to contact her PCP and to continue with what she was taking.

On January 3^rd, 2023, Mary went to her PCP. The recommendation was to continue with what she was doing with the cough syrup and Mucinex. There was no fluid in the lungs.

On January 10^th, 2023, after rolling through four bottles of cough syrup and three boxes of Mucinex, Mary’s Oncologist ordered an X-ray. Up until then, she had been referred to her PCP for diagnosis. There was no fluid in her lungs, and it was generally thought that she had bronchitis or something unrelated to the treatments. In another example of Mary’s medical uniqueness, Mary was diagnosed with a “rare” form of pneumonia called Radiation Pneumonia.

On January 17^th, 2023, Mary had a follow-up with her Oncologist to see how her body was healing with the Prednisone (a steroid) that was prescribed on January 10^th to eliminate her severe coughing symptoms from the pneumonia that began on December 21^st. We were told her recovery could take an additional six to eight weeks or even longer.

On January 24^th, 2023, Mary had a follow-up with the local Neurologist in Albany. The doctor listed more possible and serious symptoms from the MG that could happen at any point and what to watch for. We were stunned. We thought the worst was behind us.

On January 27^th, 2023, Mary had a yearly physical with her PCP. This is the doctor who thought Mary’s condition might be Myasthenia Gravis in an office visit on May 13^th, 2022. Thank goodness the doctor knew the symptoms of MG.

What Mary's future health issues look like is unknown and only time will tell how well her body recovers from all of this. As mentioned earlier, Myasthenia Gravis is a permanent condition, there is no cure.

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Maintaining Mary’s health insurance and our monthly expenses is crucial to help with the financial situation we are presently in. There is a GoFundMe account started for us by a Smith Alum friend of mine. Go to GoFundMe and search under my name, Sharon Fagan. Any help would be greatly appreciated. Thank you.

Witticisms I've Collected along the Way - Chapter 5

 

I cannot take credit for these wonderful witticisms. I’ve collected these from others who have written them.

 

·        Wi-Fi went down for five minutes, so I had to talk to my family. They seem like nice people. 

·        Sometimes I wonder what happened to the people who asked me for directions. 

·        Just once, I want a username and password prompt to say, “Close Enough.”

 

·        I think I may need professional help…a chef, a butler and a maid should do it.

·        They told me I’d grow out of my awkwardness after middle school. Still waiting.

 Don’t rush me. I’m waiting for the last minute.

 

·       It takes real skills to choke on air, fall up the stairs and trip over nothing. I have those skills.

 

·        No, I didn’t lose my mind. It got scared and ran away.

 

·        Common sense is not a gift. It’s a punishment. Because you must deal with everyone who doesn’t have it.

 

·        It’s not drinking alone if the dog is here.

 

·        Have you ever looked at your family and thought well aren’t we just two clowns short of a circus?

 

·        There’s no need to repeat yourself. I ignored you just fine the first time.

 

·        I’m a multitasker. I can listen, ignore, and forget. All at the same time!

 

·        Since there is only one of me. Does that make me endangered or a limited edition?

 

·        Make lies wrong again.

 

·        I thought about running away more as an adult than I did as a child.

 

·        People who wonder if the glass is half-empty or half-full miss the point. The glass is refillable.

 

·        Remember when we had to smack the TV because the channel wasn’t coming in clearly? I feel that way about some people.

 

·        Losing weight doesn’t seem to be working for me. From now on I’m going to concentrate on getting taller.

 

·        Some people need a shock collar, and I need the remote.

 

·        Underestimate me. That’ll be fun.

 

·        Sometimes I talk to myself, then we both laugh and laugh.

 

·        I have red hair because God knew I needed a warning label.

 

·        It’s not my fault you didn’t read the fine print. I came with a warning label.

 

·        I bake because punching people is frowned upon.

 

·        I do yoga, just kidding. I drink wine in yoga pants.

 

·        When you can find the sunshine be the sunshine.

 

·        My favorite sport is tracking my online orders.

 

·        My doctor asked if anyone in my family suffers from mental illness. I said “No, we all seem to enjoy it.

 

·        Always late but worth the wait.

 

·        FREE HUGS…just kidding, don’t touch me.

 

·        I’m sorry I’m so cranky. I’m in my terrible 60’s right now.

 

·        Hold on. Let me overthink this.

 

·        Who let me adult? I can’t adult!

 

·        I’m on a nut free diet…I avoid people who drive me nuts.

 

·        Accidentally went grocery shopping on an empty stomach. And now I’m the proud owner of Aisle 6.

 

·        That’s a horrible idea. What time?

 

·        I’m not getting old. I just can’t remember stuff because my brain is full.

 

·        Some days I amaze myself. Other days I leave my keys in the fridge.

 

·        THINK. It’s not illegal yet.

 

·    One minute you’re young and fun. And the next, you’re turning down the car stereo to see better.

 

·        I can’t. I won’t Don’t ask me.

 

·        I like to smile at people who don’t like me.

 

·        I used to be able to do cartwheels. Now I tip over putting on my underwear.

 

·        I may look calm, but in my head, I’ve punched you in the face three times.

 

·        No matter how bad it gets, I’m always rich at the dollar store.

 

·        Lazy is such an ugly word…I prefer the term selective participation.

 

·        A dog accepts you as the boss…a cat wants to see your resume.

 

·        Crazy cat lady? I prefer dedicated feline enthusiast.

 

·        My goal in life is to piss off at least one person a day. So far, I’m about four years ahead of schedule.

 

·        You can’t scare me. I’m a nurse and I worked through a freaking pandemic.

 

·        If I was a bird, I know who I’d shit on.

 

·        If you think I’m short, you should see my patience…

 

·        Being an adult is the dumbest thing I have ever done.

 

·        No, your right. Let’s do it the dumbest way possible.

 

·        Being a functional adult every day seems a bit excessive.

 

·        Mister Rogers did not adequately prepare me for the people in my neighborhood.

 

·        My favorite essential oil is bacon grease.

 

·        You think it’s bad now? In 20 years, our country will be run by people who were homeschooled by day drinkers.

 

·        My heart says chocolate and wine but my jeans say, "For the love of God woman, eat a salad!"

 

·        Common sense is not a gift. It’s punishment. Because you must deal with everyone who doesn’t have it.

 

·        SCIENCE doesn’t care what you believe.

 

·        I’m not sarcastic. I’m just intelligent beyond your understanding.

 

·        I don’t always roll a joint, but when I do it’s my ankle.

 

·        I meant to behave but there were too many other options.

 

·        Not bossy. Aggressively helpful.

 

·        You know that little thing inside your head that keeps you from saying things you shouldn’t? Yeah. I don’t have one of those.

 

·        I disappear into books what’s your superpower?

 

·        Some people are like clouds, once they disappear it’s a beautiful day.

Miss Gracie's Gotcha Day!

 I woke up on the morning of July 2, 2019, not knowing I would be the proud owner of a Sheltie puppy by 3:15 that afternoon. Miss Gracie came to me at 8-weeks old and weighed in at whopping 3.6 lbs. What a bundle of joy!

She was full of mischief and destruction all wrapped up in one furry package. I said “No” so often that I’m was afraid she would grow up believing her name was “No Miss Gracie!”

For your entertainment, here is a list of hi-jinx that warranted a “No.”

·        Don’t chew on Mommy!

·        Don’t bite the wheels on the vacuum!

·        Don’t chomp on Fast Eddie’s tail!

·        Don’t eat the carpet!

·        Don’t eat the leg on the coffee table!

·        Don’t eat the pine cones! 

·        Don’t eat the wood off the closet door!

·        Don’t pee on the…carpet!

·        Don’t pee on the…floor!

·        Don’t pee on the…rugs!

·        Drop it!

·        Stop digging up the mulch in the flower garden!

·        Stop eating the fringe on the oriental rug!

·        Stop eating the wall!

·        Stop licking the electrical outlets!

·        That’s not yours!

This was what our daily life was like in the beginning. And, we are so blessed that she came into our lives when she did.

Until the next time…

Not at Our Capitol

Random thoughts that have been running through my mind since the takeover and sacrilege of the United States Capitol on January 6, 2021:

We’ve become a third-world nation,

 Domestic terrorists live among us,

Desecration of our Capitol,

The need to hold Trump accountable for his lies and misinformation regarding Charlottesville, Ukraine, and recently Georgia.

Social Media – Trump’s lies, his belief in fake news, the hateful things he says about people who are not aligned with his mindset. His willingness to be associated with QAnon. All of this and more he willingly shares on his Twitter and Facebook accounts.

Per Wikipedia “QAnon is a disproven and discredited far-right conspiracy theory alleging that a cabal of Satan-worshipping pedophiles is running a global child sex-trafficking ring and plotting against US President Donald Trump who is fighting the cabal.”

* * * * * * * * *

Since watching our Capitol being attacked, I have had the need to write about my feelings which means it ends up in my blog. I have been so close to crying my eyes out, yet a stronger feeling has been stopping me. I feel shattered, that any American could be a part of the desecration of a symbol of democracy here in the United States. These people who participated in this heinous act are domestic terrorists and not Americans.

* * * * * * * * *

This is a Facebook posting from a friend. “Since yesterday's armed insurrection in our nation’s capital, I've seen several friends trying to reconcile that event with their Republican friends and family.

I've seen posts claiming that not all Republicans condone those actions and that we shouldn't judge all Republicans by a small group of extremists. To those friends I have this to say. You are incredibly naive. If your friends and family voted for Trump in 2020, they voted for a man who claimed even before the election that if he lost it would be due to "massive voter fraud".

They voted for a man who fanned the flames of insurrection over the past four years at his rallies. They voted for a man who, in the first televised debate of 2020, not only refused to denounce white supremacy, but called out a white supremacy group by name and told them to "stand back and stand by".

Trump voters tacitly condoned the actions in our nation’s capital yesterday. They were completely comfortable with white supremacy, children in cages and the deaths of over 380,000 Americans because the Republican administration refused to organize a national response to the pandemic after declaring a state of emergency in March. Stop trying to defend horrible people.

 

* * * * * * * * *

What is democracy? 

“Democracy: “a) government by the people esp. rule of the majority b) a government in which the supreme power is vested in the people and exercised by them directly or indirectly through a system of representation usually involving periodically held free elections.”

 The opposite of democracy?

“Autocratic leadership is just the opposite of democratic. These leaders tell others exactly what they want done, and assume full responsibility for the results. There is no consultation. The leader speaks and expects absolute obedience.”

This last sentence sums up what happened. Trump told his supporters to swarm the Capitol in defiance of the election results. He was hoping for what? That they would hold members of Congress and Senate hostage? Or they would blow up the Capitol? Burn the electoral votes? Why? So, he could finally have complete control of our government and fulfill his desire to become a Dictator like his friend Putin.

The attack on our national Capitol will be a date that many will remember for years to come. Just as the events of Pearl Harbor, the assassination of John F. Kennedy, and 9/11, will live in infamy, so will January 6, 2021. 

What is Your Definition of Compassion?

 From the Webster’s Ninth New Collegiate Dictionary, the definition is “sympathetic consciousness of others’ distress together with a desire to alleviate it.” That sounds like someone spent many years in therapy to come up with that one!

Compassion comes out of personal pain and frustration. If you were one of the lucky ones who got a date for the prom, how would you be able to understand the pain of never being asked? 

Well, for some folks it comes naturally. They “get it” without living that moment of pain or frustration. For others, they never “get it” and this is what I am writing about today.

Barbara Sher (author and speaker), uses a term, “infant narcissist.” When we are born, we are all one of these. As a child, all our needs are taken care of. We are dependent on adults for our survival, but as we grow, we move past that. Our need for connection plays a part in caring and wanting to help others, meaning, it isn’t all about us. 

We’ve all known or have met a person who just doesn’t understand that everyone else’s life doesn’t revolve around his/hers. President Donald Trump comes to mind. The narcissist lacks the compassion to understand that we all need understanding from one another.

In essence, we should be grateful for all the pain and frustration we’ve gone through in our lives. Because of it, we gain connection with each other. Compassion equals connection, and without it, we can’t be the caring human beings that most of us strive to be.

I’ve made many mistakes in my life, and I’ve hurt a lot of people in the process, much to my regret. When I did, it was because I lacked the compassion to understand the harm I was causing. As I've gotten older, my ability to feel compassion toward others has improved. I'm so thankful for that.

Due to all the traumatic events that happened in 2020, many people lost their ability to be compassionate. Lets hope that changes in 2021.

Until the next time...

Our 2020 Christmas Newsletter written by Miss Gracie (the Sheltie)

 

Dear Friends and Family,                                                   Christmas 2020

     This year's newsletter is being written by me, Miss Gracie, the Sheltie. My ancestors come from Scotland! My mommies let Fast Eddie write the last one (in 2018), so now it's my turn! You didn’t hear from us last year because we were all very busy with me.

     I turned one this past May! Oh, you may be wondering where I came from. Mommy Sharon found me at a pet shop in July of 2019, when I was eight weeks old. She looked in my face and said, “Hello Gracie”, so she had to take me home. She had told her friends that she would “never, ever buy a dog from a pet shop.” Oops!

     Talk about drama. She got me without talking to Mommy Mary first! But Mommy Sharon had to make a quick decision or someone else would buy me. There was a woman in the pet shop who asked Mommy Sharon, “Could I hold her for a minute?” Mommy Sharon said “No.” She knew I was already hers.

     Mommy Mary was working out-of-state (Massachusetts) and was facing a big deadline that day, so Mommy Sharon didn’t call her until after supper. When Mommy Mary returned home the next night, she loved me right away. Who wouldn’t? She said I belonged to the mommies and Fast Eddie and there was no sending me back!

     Fast Eddie, my Puggle-brother, turned 14 years-old in October. He pretends he doesn’t care about me, but he does. If one of the mommies takes me out without him, he starts barking and won’t stop until I get back. He loves me!!! And I love him too. He’s an old man, but he is healthy, and he can still run. (He’s FAST Eddie, after all).

     We are still living in our apartment. It’s on the third floor. My mommies complain all the time that they want a house with a fenced yard so they could just open the door to let us out. But they also say they are grateful to be here.

     Fast Eddie and I know there is this scary thing called “the pam-dem-ick.” Not sure I have that right. Anyway, it works out for us because the mommies are home all the time now. We love it!  We go out at least four times a day and sometimes even more. Mommy Mary is working from home so sometimes we have helpers to walk us.

     This year, Mommy Sharon is going all out decorating for Christmas. Last year, because I was still a small puppy, there weren’t so many decorations. They were afraid I would charge the tree or eat the ornaments. I don’t like it when things are moved or are different. Mommy Sharon says, “I have issues.” Especially when I chase birds and try to fly.

     We want to wish you all Happy Holidays and a wonderful happy, healthy, and prosperous New Year.

Mary, Sharon, Fast Eddie, and Miss Gracie

Woman with the "heavy" 30 lbs. Child (True Story)

 

This story is about an incident that I witnessed at my local post office this past week. Due to the mailing deadline set by the post office, there was a long line of customers. Everyone was being patient and respectful except for the woman with the 30 lbs. child.

She was ahead of me and I noticed two things. That she had a super-large shopping bag with gifts; and she was carrying a child (not a baby).

I did not give her further notice until I heard her raised voice. I looked over to the counter where she was. She had two packages wrapped in Christmas paper tied with red ribbon. No boxes and no brown wrapping paper within sight. She was shipping both out of the country.

There were labels to fill out and the postal employee politely asked her to move over to the empty window so that other people could be helped while the woman was filling out the labels. When she was done, she could come back to the window.

Scene 1: The woman said using a loud voice that she was being kicked out of line and she did not find that acceptable. At this point, she mentioned the 30 lbs. child and how heavy he was. She refused to move.

Scene 2: The postal employee again asked her to move to the empty window so that she could help others in line. The woman would not budge and started complaining of poor service.

Scene 3: The postal employee decided not to push it further and started the steps required for packages going out of the country even though the labels had not yet been filled out. As the postal employee was weighing the first package the woman turned the package around on the scale to get the address. Again, the woman mentioned the 30 lb. child she was holding and how heavy he was.  

Scene 4: The postal employee said she would no longer help her until what she needed from the woman was completed.

Scene 5: The woman said something to the postal employee that I did not hear. At this point, I heard the postal employee say, “You cannot talk to me like that.”

Scene 6: At this point things got a little crazy and the postal employee told her to leave the building and come back when she had the packages completely ready for shipping.

Scene 7: The woman said that no one in line was complaining. That was true, but I bet they all were in their minds, because I was having an entire conversation with that woman holding the “heavy” 30 lbs. child.

Scene 8: This was when I stepped up and said, “If I were arguing with the postal employee about the rules and holding you up, I bet you would have told me to move along.”

Scene 9: She looked at me like I was dirt on her shoes and said, “Stay out of this.” I gave her my best death stare that I learned from my own mother. She was not impressed.

Scene 10: The woman said to the postal employee, “Were you raised by wolves?” several times.

Scene 11: The woman said she was going to report her and asked for the postal employee’s name which she gave without hesitation.

Scene 12: Finally, after much muttering and head shaking, the woman left the building with her packages and her very heavy 30 lbs. child.

My Part 1: I got to the counter and asked the postal employee if she was okay. She said she was, but I could tell that she was shaken up about what had just happened.

My Part 2: We then proceeded to handle the mailing of my properly boxed package that was going to Massachusetts which was a lot less complicated than mailing internationally.

My Part 3: I do not know why I did this. When I left, I stopped at the entryway of the post office and I looked out at the parked cars. The woman was sitting in her car and not backing up. Was she cooling off? Or was she waiting for me?

My Part 4: So…I stayed put and waited. And waited… until she finally drove off.

My Part 5: As she drove off, I noticed that she was driving an expensive car. To my way of thinking, that explained one of the reasons she acted “so privileged” throughout the scene in the post office. I would not be surprised if throwing fits was her way of getting whatever she wanted.

My Part 6: Two days later (there was a snowstorm in between) I went back to the post office with a stack of Christmas cards and a small gift bag for the very harassed postal employee. I had included my contact information in case she needed a witness to the incident if the woman followed through with her threat to file a report.

It’s a tense time of year, especially this year. Choose to take a breath and realize everyone is just trying to do a good job. Don’t take your frustrations out on others.

Until the next time...