I know it's important for everyone to hear about the state of things for Heather, and it's always hard when the news starts coming from the caregiver and not directly from the patient, but it's now that time in Heather’s journey.
During July and August, the oral treatment that Heather started after chemo began to show some promise, but lost its effectiveness after eight weeks. This was an all too familiar pattern. After over two years and treatments that included 13 different cancer drugs, oral and infusion, it became clear to Heather that further treatment would do little to stop the progress of the disease or add to her quality of life.
At their appointment on September 11th, Heather’s oncologist agreed with her to end treatment for her disease. This was an incredibly difficult decision, but also crystal clear to her.
We were immediately referred to home hospice services, and while it has been a whirlwind couple of weeks getting things going, we appear to have hit a bit of a rhythm at our home. The hospice folks have been very informative and attentive, and all services and equipment are received at our house in short order. It’s an exceptional program.
I am on family medical leave from my work as of Thursday the 24th, so I am at home full time as primary caregiver for Heather. After two weeks out of treatment, she is still able to get around the house, but her fine motor skills and her balance give her trouble, so she needs someone with her around the clock to help her and ensure her safety and comfort. She is using a walker to get around the first floor, and has oxygen to assist her when she is exerting herself.
Heather spends most days resting in bed. Her pattern this week is getting up around 9:00 or 10:00, hospice workers of various sorts coming and going from late morning to mid-day, and family and friends visiting in the afternoons -- though not too many. She is up for 20 or 30 minute visits, just some time to chat, listen to stories, or sit in caring quiet. Evenings are spent with the girls after their school and sports. The girls are both close and tender with Heather and me. We are a tight team.
For those who would like to share their wishes and caring with Heather, please note that I am reading her the texts and emails that she receives each day. Cards are welcome, and she enjoys having them around. I will be regularly posting to Heather’s blog to keep information moving, but I will also ask for patience in all matters as care giving will always be my priority.
Heather and I thank you for your thoughts and prayers, and we send our best to you and your loved ones. Take care of one another.
-Byron
