05/06/2023
Hey Friends and Family,
"No news" has not been good news. Since our last big update (March), Cyndy has been generally unwell, but maintaining, with no real change until April, when she received her most recent set of scans. April 26th she received MRI results that showed extensive worsening of Leptomeningeal Cancer (attacking the three membranes that line the skull, vertebral canal, and enclose the brain and spinal cord). This has also metastasized around the liver, causing liver failure.
Cyndy's "normal" state has been extreme fatigue, full body pain, limited mobility, and sporadic nausea with poor appetite.
🩺 This past Wednesday, May 3rd, Cyndy felt very sickly, and had onset of chest pain with shortness of breath, bringing her to the hospital, where she was soon admitted. A small pulmonary embolism was located in the left lung, and her blood counts were low enough to warrant a blood transfusion. This level of anemia is typical with progressive cancers (as chemo causes drops in blood counts), and has most likely been the main cause of the ongoing extreme fatigue. 30% of cancer patients develop some type of clot during their battle. A heparin drip was started for a short time to get a start on the PE.
Thursday, Cyndy and Denton spent their wedding anniversary in the hospital, where an ultrasound ruled out further clots in the legs, and an echocardiogram got a good look around her heart. 🩸She received one blood transfusion (which takes about 4hrs per unit), and her counts came up and stayed up enough not to warrant a second transfusion, but not high enough to be great. Her coloring and outward condition improved greatly with the fresh hemoglobin and everything that comes with clean blood. This also improved the crushing fatigue, but not enough to mitigate it completely.
📋 The plan moving forward is staying off the oral chemo for a stretch, and receiving a weekly, lumbar-injected chemo into the meninges, to slow the "lepto" progression. She will self-inject a blood thinner daily in between the lumbar chemo shots. The lumbar shot and the blood thinner shot do not do super well together, so she will discontinue the blood thinner in the days just prior to the chemo and resume after the chemo is injected.
Friday evening, Cyndy got to go home, with a new at-home pain management plan, and an assigned palliative care team to move forward with her, and help her make decisions about her self care and pain management.
🏥 The experience of care at UPMC York has been top tier.
Everyone's foremost priority will remain Cyndy's pain management, comfort, and private time with family.
Do continue to support her with your love, prayers, pictures, and donations. Let's help her give it a fight 🥊
📣Team Cyndy
https://gofund.me/b68bfcf9