Two weeks today
It is so surreal and I donít know where to start, but I feel compelled to get back into this community. Iíve really struggled with sharing this here, but I know one thing for sure, there are a lot of good people here who are going through their own struggles, so I decided it was time.
On October 8th at 11pm, I lost my wife Karen to hepatocellular carcinoma, or primary live cancer.
Karen had not been feeling quite right for the last year, but it was subtle. She had back pain that would go away with a massage or two. She had tests done that saw polyps in her abdomen, but they were benign. They also saw irritation, so they treated her for gastritis but she still complained that she didnít feel right, so they did an ultrasound and discovered a large tumor on her liver. This was mid-July.
They scheduled an MRI with contrast to determine if it was malignant, which it was, so off to the oncologist for bloodwork and a pet-scan. After analysis and confirmation at the Mayo Clinic, it was determined that she had many Ďhotí spots throughout her liver, her uterus, a kidney and lymph nodes and her spine, the worse part was that it was very aggressive. They had seen changes in just 2 weeks time.
We were told she could try a very toxic chemo treatment that might gain her a couple of months, and radiation to help with back pain. We decided against that unless they could get her strength up.
She wanted to know more about clinical trials, but they told her she needed to get stronger in order to consider it.
We were referred to the head of Palliative care at Maine General and started to get meds for pain and nausea, which did not work at all. She couldnít ingest water, let alone morhine, adavan, haldol, etc.
After numerous calls to the doctor, I made the decision to stop all meds and called the doctor about home health care or hospice. Karen was very frank and direct that she knew the inevitable and wanted to skip to the chase. After a lot of discussion about navigating the logistics, I called 911 and had her transported to the local hospital with the intention of taking her to the area hospice house the following day.
I canít say enough about the facility, Androscoggin Hospice House in Auburn, Maine and the wonderful staff there. It was calm, homey and peaceful; exactly what Karen was looking for. Each room had a beautiful view with bird feeders right near the window. There was live music being played almost every day, and the nurses/doctors were spot on. There was a nurse practitioner who went way beyond her duties with Karen and sat numerous times with the family to discuss things with us. Her biggest concern, as Karen had told her, was the care for my father-in-law who is 93 and has dementia among other issues. This NP was aware that I had promised to continue taking care of him at home, which Karen and I have been doing for 3 years now. She offered help and advice on many occasions, which I am very grateful for.
Karen spent 31 days there. She had only fluids for 36 days. I am still awed by her strength.
I am glad she isnít suffering anymore but I will miss her dearly for a very long time.
I am not posting this for sympathy, but for awareness. This whole ordeal has made me aware of a situation in our State about a legislative bill which is in the petition stage to allow terminally ill patients to die with dignity. I see a need for this bill to pass. In Karenís case, she literally starved herself to death. I know she didnít weigh more than 50 lbs when she finally passed. She spent many days at the hospice house very sick, frustrated and depressed that she couldnít have it over with; even with the heavy doses of very strong meds.
Please take the time to reach out in your area and thank the hospice workers; they deserve a special place in heaven. Also, check what your State has for laws and be an advocate for those suffering with terminal illnesses. Itís unfortunate that it is so common these days.
Thanks for taking the time to read this and allowing me to vent a little. I'm doing okay, just taking it day by day, minute by minute. This Saturday we are having a celebration of her life with family and friends, which will be hard but helpful knowing how many people loved her.