Support Sharon and Mary During a Health Crisis

My name is Archer Meier. I'm a Smith College alum and am fundraising to support my former work-study supervisor, Sharon and her wife, Mary, in a difficult time. Below is a message from Sharon detailing their experience this past year:

Dear Friends,

We have all experienced moments in which our life’s journey is forever changed. That day for us was June 1st, 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 17th, 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 17th, 2022, Easter holiday weekend, while visiting friends in

New Hampshire, Mary mentioned her eyelid was drooping.

On May 13th, 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 1st, 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, extend her arms to reach above her shoulders or grasp things such as doorknobs.

On June 21st, 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 28th. The clock was ticking, and Mary 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 a prescription to start Vyvgart (an intravenous medicine), and an oral medication called Pyridostigmine (a.k.a. Mestinon).

On July 7th, 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 11th, 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 14th, 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 August 1st, 2022, Mary went to Capital Cardiology for a pre-op sign-off that her heart could handle the high-risk surgery.

On August 8th, 2022, Mary had a cardio-stress test from the August 1st visit. She passed with flying colors.

On August 10th, 2022, Mary met with a local neurologist here in Albany for a pre-op sign-off that her MG could handle a major surgery.

On August 15th, 2022, Mary had a Myasthenia Crisis (critical 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) to stabilize her MG symptoms. This is one of the treatment options for MG. She was released on August 19th. 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 2nd through September 6th, 2022, Mary was administered another round of IVIG (Intravenous Immunoglobulin) to give her body an extra boost before surgery. Mary was given this five-day course at home. Each infusion would last about 4 to 5 hours hooked up to an IV pole in our living room. I decorated the pole with lights to give it a stylish look!

On September 7th, 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. That nerve controls the left 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 permanently paralyzed.

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

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

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

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

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

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

On October 11th, 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 19th, 2022, she saw the neurologist here in Albany for further follow-up.

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

On November 2nd, 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.” I very much appreciated his wisdom and restraint. In an abundance of caution, the surgeon referred Mary to radiation oncology for a course of treatment to get those little creatures, before they could get organized into another tumor. The radiation treatments were definitely needed. One of the side effects could be some irritation to her 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 7th, 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 21st, 2022, Mary saw her PCP for her assessment of progress after Mary’s surgery.

On December 19th, 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 23rd, 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 DM. By that time, COVID had been ruled out as she had already done two at-home tests. Both were negative.

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

On January 2nd, 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 continue with what she was presently taking.

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

On January 10th, 2023, after rolling through four bottles of cough syrup and three boxes of Mucinex DM, Mary’s oncologist ordered an X-ray. Up until then, she had been referred to her PCP for diagnosis. 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 17th, 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 10th to eliminate her severe coughing symptoms from pneumonia that began on December 21st. We were told her recovery could take an additional six to eight weeks or even longer.

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

On January 27th, 2023, Mary had a yearly physical with her PCP. This is the doctor who thought Mary’s condition might be Myasthenia Gravis during an office visit on May 13th, 2022. Thank goodness the doctor knew the symptoms. During this visit, Mary mentioned the upsetting visit with the neurologist and the dire symptoms he had mentioned. Her PCP was not thrilled by what he told us. She told us she would search for another neurologist who wasn’t as doom and gloom as the previous one had been.

On February 3rd, 2023, Mary saw her new neurologist at Albany Medical Center. The doctor was full of hope regarding Mary’s MG after she examined her. She came up with a plan to help keep Mary’s MG in remission! We are so grateful there was a cancellation and that we got in so quickly to be seen by her.

Our plan for 2023 is to keep Mary healthy and for her MG symptoms to remain in remission. For the next three years she will be getting a CT scan every six months to make sure the cancer is truly gone. Hopefully, she won’t develop any more “rare” issues. Life is good!