Through x-rays, ultrasounds, super ultrasounds, an MRI, and too many doctor appointments Mama Marian has finally found some relief for her leg pain. And yet there are still so many questions, hypotheses, and a variety of non-encompassing theories as to why it is there in the first place. The MRI suggested a muscle tear, the PT thinks it may be the way Mom has been compensating with her hips for what her right leg can no longer do, and the neurologist believes it may be all of the spasms she has been having.
It was quite a process, but Mom left Dana Farber on Thursday fully infused and with a prescription for Percocet. Although I can most certainly appreciate the concern and caution surrounding the prescription of narcotic pain killers these days, getting them when you really need them can be a daunting task... apparently even for someone with a terminal illness. Mama Marian continues to try and take Ibuprofen during the day so she doesn't get so sleepy, but the Percocet is there when the pain is too great and to help her stay comfortable through the night. She also continues to have focal seizures that are short and localized on her right side, but often leave an aftermath of exhaustion and depletion of what was, even seconds beforehand.
The doctors continue to work on finding the right level of medication to reduce and minimize the seizure activity in her brain. For the most part, though, Mama Marian is not alarmed or frightened by it anymore. She is tired of being sick, of course, and tired of being tired, but continues to delight in all that has brought her pleasure in the past.
So Aunt Beth is enduring the journey/maze and is putting on the many hats we have become accustomed to wearing these days... caretaker, nurse, advocate, medication administrator/pill counter, driver, call center operator, relayer of information, and chief investigator/detective of all things new, concerning, and symptom causing. When I think about it, it's no wonder people automatically consider parental caregiving "role reversal"; it's really just a glance into what it must be like to be a mother or a father.
Through all of the changes and through all of the grieving that continue to be so prominent in our lives, I continue to find the advice of others so true through experience and reflection. What family, friends, co-workers, neighbors, and even strangers have said about this process sometimes doesn't make sense or feel right until much later when I find that I am relaying it to myself or recognizing its truth in the moment. When Mom was first diagnosed and I could not seem to find solace in much of anything, many people told me that she will always be here, even after she dies; that she will always be my mother and that a part of her will forever be with me. This didn't make much sense to me at the time, but I heard it again at Tracy Sigman's memorial last month and suddenly the little seed that was planted long ago began to take root. Ben said simply at the end of the service, "I've learned that it's not that I loved my mother... it's that I love my mother" (or something similar... sorry Ben if I've misquoted you!)
At first, it was painful to recognize how much my mom is a part of everything that is life for me; at times it still is. It sometimes feels like a slow tearing of my heart. Yet, on beautiful summer mornings like today I smile at how much of her is in me taking joy in the world around me.
When I was growing up I would roll my eyes at how seemingly "over-talked" and "over appreciated" the smallest things would be in my house. Mama Marian finds delight in what often gets overlooked or taken for granted... a light wind, a red cardinal on a tree branch in the yard, the warmth and comfort of her own bed, a smile on a dog. Over the years, I've learned to love this and find it endearing and even inspirational. Every now and then, I get a glimpse of that in me and it makes me laugh. I realize how much we are alike and how much of me is really her and I am grateful for that; I am comforted and warmed by knowing how much has not changed and cannot be taken away.
