My mom told me that while I was sitting with her today. I caught a flight from Texas this morning and arrived in Payson late this afternoon amid a drizzling chill rain and imminent threat of snow. She smiled when she saw me and held her arm out wide for a big hug, which I was glad to both give and receive. I love being here with her; all of this seems manageable when I'm here with her. A dear friend and surrogate mother of mine texted me earlier this week and said, "Hi Angie, just wanted you to know I was with your mom this morning, and it was amazing. I love her so much. The amazing spirit and peace that is all around her is so tangible I can almost see it with my eyes and taste on my tongue. Once again Sara is teaching me how to do a very hard thing with dignity and courage. She is and always will be my friend, my sister and my hero."
I'm telling you this now, jumping so far ahead in the narrative, because I want you to feel the peace and know the positive as we go through this next part of the story. I can't say any part is really the hardest, because we haven't been through the whole of it yet, but I've been avoiding writing about after she had surgery.
When the med techs brought her out of the operating room she was very disoriented and frankly quite alarming to look at. But she was there, and we hurried to be near her. They took her to the Neuro Shock Trauma ICU and set her up with a room and a med tech to stay with her the whole first night. It wasn't a very comforting room, but it likely wasn't designed with comfort as a primary goal. There was a large pillar in the center with electric outlets from which hung many cords and dark monitors in varying colors of charcoal and cream. The walls were blank and windowless, and the shape of the room felt strange and disjointed because of walls that stuck out and cabinets in odd places and everything was pale grey or stark white. Add to all that the weird lighting of flashing computer panels and the ambiance of tension from the gravely ill or severely injured and the place felt like nothing so much as the wampa cave on the ice planet Hoth.
My mom was anxious and still mostly under the anesthesia. She continuously grabbed my father's hand over and over and repeated, "You stay. You stay." We reassured her as best we could that yes, he was going to stay. I couldn't tell what was surgical damage and what was surgical trauma at this point, but it was getting late and I had a flight back to Texas incredibly early the next morning. I would need to wait and get news from other sources.
I made it back home without incident and updated my husband. Then I went to sleep. Over the next several days I called and texted and video chatted my sister, my brother, my aunts and my dad to get more news from them about my mother and everything the surgeon had said. He had removed every cancerous cell he could find with this microscope. Good news. The center line of her brain had shifted. Bad news. They were able to place the entire glio-wafer (targeted chemo) in the empty space where the larger tumor had been. Good news. She couldn't see out of her left eye. Bad news. She couldn't turn her head to the left. Bad news. She had total left side neglect. Bad news. She would likely never regain the use of her left side. No walking. No standing.
No way. My mom had, for months now, been getting weaker and saying that food was not her friend. Ciera learned that one of the first things cancer attacks is your appetite, trying to prevent you from ingesting enough calories to keep your body strong and functional. Ciera told my parents this interesting fact, and from then on we reinforced that cancer was lying to her and food was necessary. She made a valiant effort and started eating more. She was exhausted all the time and the physical therapy they wanted her to do was incredibly difficult and disheartening. Bryant, my brother-in-law, gave her what has affectionately become known as the "cowboy up" speech, and I hope if I'm ever in a situation like she is that someone will care enough to talk to me like this. "You fight this, Sara," he said, "you fight this every moment of every day. When they bring you food and you don't want it, you remember that's cancer lying. When they take you to do your physical therapy and you don't want to do it any more, you take another step because you are a fighter. You can beat this, because you can do anything."
It was much longer, and completely from the heart, but that was the main theme. It is worth pointing out that Bryant has been my brother-in-law for more of my life than he hasn't been, so although he technically is my brother-in-law he is more brother than in-law. And the speech was very effective, because afterwards whenever my mother finished her entire breakfast she would have my dad take a picture and say, "Tell Bryant I'm fighting," Or when I was assisting her in her initial physical therapy (which was both difficult for her and those assisting her) she would pause for a break and then say, "Just one more step. I'm fighting."
After some difficulty getting the insurance companies and the hospital and the Acute Inpatient Rehab facility on the same page, my mom was transferred from ICU to the 4th floor (for Christmas, as described in the previous post) and then to the Acute Inpatient Rehab on the 3rd floor of the hospital. This was my favorite of all the places she stayed, because the staff and those in charge of her treatment seemed to be the kindest and most willing to answer questions. This was also the place where the most changed for her, and for all of us after the initial diagnosis.
She had 3 kinds of therapy 5 times a day. Physical, occupational, and speech therapy all covered very distinct aspects of daily life: standing and walking, activities of daily life, and thinking and cognitive skills were all covered. The physical therapist team was my favorite. In addition to helping her regain strength and control of her body, they also gave instruction and classes to each of us who were going to be helping to take care of her. Their job, as they explained it to me, was to prepare her to go home.
She wanted to go home. We all wanted her to come home. But there was a small problem; my parents' house, although excellently and tastefully decorated, is THE WORST for anyone with physical limitations. There are stairs everywhere, including to get into the house. There are two bathrooms on the second floor and a third in the basement, but none on the main floor. Even the main floor is separated into two separate parts with stairs dividing them. Mom could either be on a floor with a bedroom and a bathroom, or be on a floor with access to food and water and the outdoors.
One of the many things we'd discussed during the Christmas vacation when we were all together was the possibility of building an addition on the main floor of my parents' house. It was all the rage in their neighborhood anyway- two neighbors had already built large additions to their houses and a third was in process, and that was only on her street. Doing more seemed easy. The six of us (three siblings and three spouses) debated and designed a brand new ground floor master suite for my parents, and I sent the design on to an uncle who was a general contractor by profession.
This idea stalled out somewhat when I asked her surgeon if he thought it would be a good idea. He hesitated, and then recommended against it. He again indirectly referred to the answer to the last question none of us had asked by saying we should hold off on doing anything, because it would take too long.
No, I didn't ask him how long would be too long. I thanked him for his recommendation and moved on. And I suppressed even the possibility of what he was suggesting. So far everything had been positive, time with my siblings and my family had been fun, and we had enjoyed our time together.
We drove back home after Christmas break so the kids could start school again and I could go back to work. Or at least try. Monday was all right, but Tuesday I went to work early. I felt fine getting ready, and fine going to work. Once I got to work that morning my boss pulled me aside and started to go through with me all the issues and problems that'd come up while I was away. My stomach started to hurt. Then it hurt more. There are always issues and problems at my work that are my responsibility to manage, that's my job security. But in about 3 hours of being at work that Tuesday I had gone from feeling completely fine to feeling so ill I abandoned them all and went home.
I arrived home just in time to run to the bathroom and grab a bowl and then proceeded over the next half hour to purge my body of everything I've ever eaten. I'll spare you the details, but between weighing myself Tuesday morning and weighing myself Thursday morning I'd lost ten pounds. Once I'd finished in the bathroom, my most excellent husband cleaned me up and put me to bed where I slept the rest of the day.
That night I got a phone call from my dad, where he asked me to go and get Will. This, for any of you who don't know, is a very bad sign. Good news they will tell me immediately and leave it to me to pass along to my husband. Bad news they give him first to prepare him, and then call me and make sure he's with me.
My parents that morning had spoken with the hospital social worker and the neuropsychologist. I'd wanted her to talk to the neuropsychologist much earlier in all this, because part of his responsibilities at the hospital were to help patients with terminal or potentially terminal diagnoses understand their care and options. Better late than never, I guess, or so I've been told.
He had outlined their options for treatment and the likely result of each. My mom had been laboring under the assumption that she had no say in her care and treatment, but that she just had to do whatever the doctors said and take whatever medication they prescribed. The neuropsychologist let her know that no, this was her treatment and she could choose what she wanted. My mom had been dreading the chemotherapy and radiation because she HATES feeling nauseated (see previous posts). The neuropsychologist explained that with chemo and radiation she would probably have five months, maybe six left, but she would feel sick all the time with not a high probability of success. Without chemo and radiation she would have maybe three months, but she would be herself. Although it would be uncomfortable at times, she would feel well for most of it.
Five months of the thing she hates most in the world or three months of being herself, and they chose the latter. That's what they were calling to tell me, that my mom had decided to forgo the chemotherapy and radiation to fight the cancer growing in her brain. That was the reason her surgeon had said the addition to the house would take too long. No doctor can predict with accuracy how long someone has left in these situations, but we needed to start preparing ourselves for the reality of my mom passing away. People survive cancer; people even survive glioblastoma multiforme stage IV. But not usually, and not without treatment.
This was the post I've been putting off, the one I've been trying to deal with. Every prayer, every miracle thus far had been about getting her better. Every blessing, every moment of peace had been feeding that belief that she was going to get better, to be okay. Every one except the very first one I'd had; that first Saturday in December when I'd gone to the temple and prayed about her the entire time and gotten three separate and distinct impressions. 1. Everything is going to be okay. 2. Everyone will have peace. And then 3, He needs her. Every time I reflect on that last one the emphasis gets stronger. He NEEDS her.
Which is understandable- we all need her. Have you met my mom? She's amazing. And the most incredible thing about her is how is always deflects the credit to someone else. She never wants to be in the limelight or the center of attention. My mom wants everyone to feel good about themselves all the time, to spread the accolades and to make sure everyone else feels LOVED. That's been her whole life, focused outward in service and reluctant leadership.
Now she isn't in charge of anything, and none of us know how long we have left with her. The hospital says 3 months. Her surgeon, when I finally swallowed my heart back down into my chest and talked to him about it, said that without the surgery she would already be gone. We still aren't up to current in the story; we need to talk about the rest of her time in physical therapy and what we all learned there. We need to talk about her roommate and what changes we made to the house before she got home, and the most important pieces of advice the head physical therapist told us before we left. We've barely begun to talk about all the things we've learned and questions we've had answered. There is still plenty of the story left to go.
This part is important because this is the moment where everything changed. The pivotal point where, "What's it going to take to get her better," became, "How are we going to say goodbye?" I wrote a whole other paragraph after this, but I deleted it because it was just a little too much of a personal pity party. She's still here. She will always be my mom. Life isn't going to happen the way I expected, and that's going to hurt because I love her so much. The pain then is part of the happiness now, as C. S. Lewis said. She's dealing with all of that too. She hates when people come to see her and cry. It makes her feel both awful and self conscious. She hates being the center of so much attention. And she hates thinking how much she's going to miss us, and how she's going to make everyone so sad.
But it isn't over yet, not for any of us. We still have time with my mom now because of the promise that surgery was the right choice at the right time. And I still have almost a month of events to catch you all up on. So remember, as my mom says, everything will turn out okay in the end, and if it's not okay, it's not the end.
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