Mary’s Story

Site created on November 10, 2021

Welcome to our website for updates. This website is strictly for updates, if you are wanting to donate please visit our Go Fund Me page, there is a link in the "ways to help" section of this page. Thank you all so much for your support and love throughout. We appreciate you all so much looking for updates and keeping in contact with us. We have had so many messages and so many people who love and care about Gram that we decided it would be easier to keep everything in one place for updates. Thank you all again, your support and prayers and noticed and felt.

Newest Update

Journal entry by Joanne Stemska

Here is the latest update on Mary. A lot has happened since the last post. Mary's Lumbar Puncture confirmed that the majority of Mary's cancer was the kind with the EGFR mutation. That is the mutation that her medication (Osimertinib) attacks. Shortly after getting those results, Mary started doubling the dose of her medication per her doctor's recommendation. The hope was that by doubling the medication it would help to prevent further disease progression for about 3-4 months. Unfortunately, Mary did not tolerate the double dose. She had a significant increase in symptoms and was doing quite poorly. Dr. Kwiatkowski (Thoracic Oncology) felt that Mary had Osimertinib toxicity, thus she went back down to the single dose. Her symptoms have improved since decreasing the dose. In addition, Dr. K suggested three possible treatment options moving forward. The first option was high dose Chemotherapy. The second option was Proton Beam Radiation at Mass General Hospital. The third option was Palliative care/Hospice. Mary had a consult with a radiation oncologist at Mass General regarding the Proton Beam Radiation. This type of radiation essentially sterilizes the cerebral spinal fluid and can be quite effective in the brain as well. However, this treatment requires significant stamina to tolerate, and can result in some very severe symptoms, such as increased fatigue, nausea, vomiting, anorexia, and possibly being bed bound. The symptoms often last long after treatment. In addition, this is a new treatment for Leptomeningeal disease, so insurance approval would likely be an issue. The Radiation Oncologist offered an alternative approach of localized radiation to a specific area in the brain where the cancer is causing the most symptoms. Mary ultimately decided not to pursue either radiation treatment. Mary and Bernie did have an informational phone conversation with Wentworth Hospice, but decided they are not ready for Hospice yet, as she does not wish to discontinue treatment. Mary wishes to continue taking the Osimertinib for the time being. Despite the cancer becoming resistant to the medication, it may offer a partial benefit of slowing disease progression. During her visit with Dr. K, it was also discovered that Mary had developed a large blood clot in her lung. She was placed on a blood thinner for the blood clot. Unfortunately, Mary has become quite unsteady on her feet. And despite Bernie being by her side at all times (to the point that she calls him her shadow), Mary sustained a pretty good fall recently. Mary was in the kitchen when her legs gave out, causing her to fall. She sustained a pretty large cut on the top of her head. Mary went to Wentworth Douglas Hospital. She had two Cat Scans, which showed that there was no bleeding in her brain. She received 15 staples to her head and was discharge home. Since the fall, Mary has become progressively weaker. She is having more difficulty walking, and relies on the wheelchair most of the time to get around. Mary has a follow up appointment with Dr. K tomorrow. Despite the medical challenges, Mary had a nice Christmas. She went to a small gathering hosted by Kim (her niece), where she had some great food and laughs with family. She wants to thank Kim for the amazing prime rib and wonderful company. She spent Christmas with her immediate family at my house. She wishes to extend thanks to Lynn Olden for one of the best chicken vegetable soups she has ever had. She wishes to thank her son-in-law, Matt, for the muffins and meat pie. She said that she is very thankful for all her family and friends and loves you all very much.

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