It has been a difficult couple of weeks for Mama Marian and for us all. After the positive MRI results at the beginning of the month, we hoped that the pain in her leg would begin to subside with physical therapy and medications. Unfortunately, things went the other way. Mom's pain increased over the days and weeks that followed and she has found little relief or comfort for the spasms and cramping since.
On the 10th of this month Mama Marian had a serious fall between the headboard of her bed and the dresser in her room. She had been wanting some fairly minimal privacy to get dressed, use the bathroom, etc... at times and had asked her home health aide, Beth, to wait outside the door while she changed that morning. Beth heard her cry out as she fell and called the ambulance when she saw that Mom had hit her head. Fortunately, it was just her face that was bruised and she was released that afternoon after some x-rays and pain medications. May was, as always, amazing and canceled her plans to pick Mom and Beth up from the hospital upon discharge. Coordinating the details of such things can be difficult from several hundred miles away and it was such a relief to know that she was in such good care.
The following Monday, Dad and I tried to find some inpatient physical therapy/rehabilitation for Mama Marian, as she was unable to continue out-patient treatment with her pain and fall risk. The doctors felt that the PT might help relieve her pain and help her re-establish some movement and coordination, but it became near impossible to do it safely or without terrible discomfort. We called a couple of places in Connecticut and emailed with the Nurse Practitioner (NP) at Dana Farber. Abby, the NP, explained that she is concerned about Mom's quality of life, despite the tumor's reduction in size, as evident on the recent scan.
Although the tumor is taking up less blood this does not necessarily indicate that it is, in fact, smaller or less invasive. So, regardless of improvements seen in the MRI, the symptoms continue to worsen. Abby suggested that we consider the possibility of discontinuing the Avastin so that Mom could enter hospice care for comfort and pain management. She also mentioned some pain management clinic options that we could pursue closer to home in Connecticut if we wanted to continue the Avastin. This was the first mention of hospice as an option and it was repeated during Mom's follow-up visit to Dana Farber the following Thursday. Mom and Dad left the hospital after her infusion feeling somewhat confused and taken aback. How and why would we want to give up the treatments that have been so effective in shrinking her tumor? Avastin has been the only thing that has worked so far!
So, we arrived at Chincoteague Island this Friday with heavy hearts. The trip took over 11 hours for Mama Marian and Dad, as they hit horrible traffic on the dreaded New Jersey Turnpike. I arrived earlier, around 7pm, after spending the past couple of days taking care of Jody post-surgery and trying to get some last minute things in place before I left. The sun set over the beach house that evening right as a rain shower passed through. Mom and Dad got to the house about 11pm that night.
We took Mama Marian to the beach on Saturday after she had breakfast and took a nap. Her pain seemed to be getting worse and she was exhausted from the Percocet, muscle relaxers, and anti-seizure meds that she continues to take. However, it was a beautiful afternoon on the beach and we were able to get Mom a free pass for the beach and for all the National Parks because of her disability. The Kiwanis Club offers beach wheelchairs for use and we were able to borrow one for a couple of hours to get Mom onto the beach.
When we returned to the house, Jeff, Dou, and Lorien arrived. We all went out to dinner at the Sea Shell Cafe and took Lorien to see the ponies across from the restaurant. Afterward we went home and Mom was so exhausted she went right to bed. Uncle Al and Aunt Beth arrived shortly after 9pm but were not able to say "hello" until the next morning.
Sunday was a difficult day for everyone. Mom was up for a lot of the night on Saturday after we all went to bed and she had some fairly severe leg pains early on Sunday morning. We managed to get out for lunch and ate at The Crab Shack outdoors on the porch. Although we planned to go to the beach afterward, Mom asked to just go back to the house. She was so tired and was starting to have some more pain in her leg. Aunt Beth stayed with Mom while she rested.
That evening before dinner we were able to sit down together on the screened-in porch. We talked about the last several months, Mom's diagnosis, and the latest from the doctors at Dana Farber. It was very, very difficult for all of us and I felt the lump that had been sitting in my throat all week begin to ache as Mom told us that she doesn't want "to go" but doesn't want to be in this much pain either. We had been grieving the changes for months... acknowledging that Mom would most likely not get back on her bike again, would not be able to cook Christmas Eve dinner, or even terrify us behind the wheel of her Subaru as she swerves for mailboxes. But this was harder. We listened through our tears as she told us that if the pain is not under control soon she cannot continue to fight the cancer for long. The decision would be hospice unless something was able to alleviate the pain in the meantime. Mom also wanted to talk with the doctors at Dana Farber one last time.
Late Sunday night/Monday morning Mom woke up with intense, shooting pains through her leg and foot. She told me when she had never been in such horrible pain. Throughout the day on Monday Mom slept and was only awake for an hour or so at a time. At one point she got up and was singing in the bathroom, putting on her makeup, and getting ready to go out on the town. After an afternoon nap, we decided to get everyone together and go out for some seafood. However, about 20 minutes after getting to the restaurant and ordering Mom wanted to go out to the car. We took her to the car but she was in a lot of pain and wanted to leave so Jeff and I drove her back to the beach house. Her pain continued to intensify and when we got back to the house she couldn't get out of the car, so we took her to the hospital.
The hour-long drive to the hospital was excruciating for Mama Marian. Jeff defied the laws of physics and the limitations of the station wagon with 85 mph speed and I did my best to crawl over the front seat to massage some of the pain out of Mom's foot.
As we waited for the Physician's Assistant (PA) to get to Mom's room in the ER, the cramping in Mom's leg became unbearable. Despite our efforts to help steady and relax the muscles, her right foot started to shake uncontrollably and she was screaming in pain, begging for some relief. At that point, Mama Marian was very clear in her thinking and in her speech. She was finally given an IV of Dilaudid and Valium and, as it began to take effect, Mom told us very simply and honestly that her decision was now clearly to move ahead with Hospice. Dad, Dou, Lorien, Beth, and Al had all arrived about a half hour after Jeff and I. After four more injections of Dilaudid Mom's pain level was down from a ten-plus to a three or a four. Dad and I left at about 3am after the PA agreed to admit her to the hospital.
Two days later, here we are on the 5th floor of Peninsula Regional Medical Center in Salisbury, Maryland. Mom has had another couple of rough nights. No pain... but confusion, agitation, and delirium from the heavy narcotics. She is unsure of where she is and why she is here. Last night after we left the hospital she was moved to a private room close to the nurse's station because of this. This morning they started her on a non-narcotic pain reliever, Toradol, and discontinued the Valium, in hopes that the cognitive side effects would subside. They did momentarily afterward, but this afternoon brings increased confusion and disorientation for Mom.
We are working on getting Mama Marian a flight from Maryland to Dana Farber in Boston. She cannot travel again by car, as the trip is too long and uncomfortable for her. At this point, we are trying to get a flight through Angel Flights. They would transport her by private plane or jet at no cost to us. The logistics are still being worked out, however, and we continue to wait on the results from Mom's CT scan this morning.
I will continue to update as I am able. Words are hard to find these days and putting them on "paper" seems even more difficult. Please keep Mama Marian in your thoughts, prayers, and minds and know that we are so grateful and so delighted to have so much support and love through all of this.
