As some of you already know, our incomperable mom, Sue Lewis, was diagnosed last Friday with terminal brain cancer, glioblastoma. After a few days in the hospital, she was released Saturday to come back home into the permanent full-time care of my incredible dad, Joe, and me and my brother, Eli, who landed Friday night from New Orleans.
To answer the most important questions immediately: no, treatment is not an option. She is not in pain, is mostly lucid, and her sense of humor is 100% intact. She is at peace with her diagnosis and is handling the situation the way you all know her: loving, generous, gracious, and resolute.
Food is taken care of for the time being, but more on that later. While her diagnosis comes as a shock and absolute devestation to us, it is actually one of the final steps in a months-long journey.
In July of 2020, Mom slipped while hiking and sustained a minor concussion. Brain scans were done at the time, nothing abnormal was found, and she was released the same evening. Doctors told her that concussion recovery varies from person to person and to expect some headaches.
She had a few headaches and was also having brief and rare moments of confusion. When these symptoms worsened, she and my dad began a series of doctors visits that quickly produced a diagnosis: temporal lobe epilepsy. It could've come from the head injury or developed on its own.
She has never had a physical seizure like most associate with epilepsy; hers have been moments of spatial disorientation or slipping up with words. Beginning in late Fall 2020, she also lost the ability to type clearly and use her phone effectively - that's part of why she has been incommunicado these past months.
After her epilepsy diagnosis, Mom began treatment via the recommended medications, many of which contained "headaches" as a primary side effect. She was also finishing a year-and-a-half-long orthodontic treatment, which caused occasional headaches.
As the months progressed and she searched for the right medication to control her condition, she could feel improvement in her seizures and occasional improvement in her headaches. She had another MRI in November, which came up clear.
Last week, before this final chapter began, we were all elated when she was finally given an appointment for an overnight stay at Harborview's epilepsy center, scheduled for mid March. That appointment will no longer be necessary.
Over the past three months, her headaches and confusion only escalated until finally she was taken to the emergency room last Thursday morning. After another round of MRIs and CT scans, they discovered a 3.5 inch fatal tumor.
My mom has told me many times as I've prepared this statement: she wants to make crystal clear to each person reading this that if anything here is a surprise or you hadn't heard about anything being wrong at all, know in your heart of hearts that you being out of the loop was nothing personal. Her decline has been very gradual, and as with most people, she didn't want to share something that we thought was under control and on the way to getting better. My dad, brother, husband and I have respected her wishes from day one.
COVID has made this whole process indescribably hard. From February 2020 to this past Saturday, I didn't come within 6 feet of my parents. We visited occasionally, fully masked, and had frequent video calls. My husband and I have been exceedingly cautious with our COVID precautions, have remained symptom free, and yesterday we made the choice to be with my family.
I hugged my mom. I hugged my dad. I hugged my brother. We sat, masked, for an evening together, processing.
(Any judgement about our COVID risk taking under these circumstances can kindly be kept silent.)
What happens now is this: we keep Mom as comfortable as possible and take things one day at a time. I am on leave from work and will help my dad and brother care for her. As of this posting, there is no clear path to the end, other than it is coming soon.
Many of you are expressing an interest in helping us and staying up to date about her status; we will add more information to this post soon. We will keep you aware of what is happening.
If you would like to reach out to my mom or my family, you can message me here on Facebook, text my mom, or call her. Her condition is dynamic, so you may just need to leave a phone message. Anything you write, we can read to her. She wants to respond to as many as she can. Her ability to respond digitally continues to diminish, so you may receive a garbled message.
She loves you all. To the many co-workers, friends, and loved ones she has grown to adore over the past decades of time together, she thanks you for who have been to her and our family.
Thank you to everyone who came to Sue's Celebration of Life event yesterday. It was joyous and heartening to experience the community of love that she built for herself. To those who could not attend, we received your good wishes and love and look forward to seeing you soon. We appreciate every one of you and will take heart knowing we can continue to share Sue with you in the weeks and years to come.
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