My blog says I haven't written since 2013. I wish I could go back to that year and not have lived this one, except if I did that I'd have to start 2015 over and do this all again. No thank you. I'm writing this post and the several following with the permission of my family members and with the intent to share what we've experienced; some of it awful, some of it spiritual, some of it silly, most of it sad. This is not to convince or testify or lay blame or persuade. You may not be able to relate. I hope you can't. But I know so many of you care so deeply that either a) knowing that we're hurting and not knowing why is hard, or b) you know why and you want to know more and check in every day but you also don't want to be annoying.
Or someone just linked you this blogpost and you have no idea what's going on. You may want to quit now.
I had this really strange dream a few months ago. One of those really vivid, ultra real dreams like I'm not supposed to have anymore now that I'm on my maximum dosage narcolepsy medication. In my dream I was in the front passenger seat of an SUV and my mom was driving. We were traveling on a narrow road with a steep drop off on the driver side and a flat sheer cliff face on my side. The view in front of us and to the left was spectacular; it looks like all of those postcards you see of Bryce canyon with the strangely rounded columns of rock sticking up out from the ground like enormous chess pieces. My mom was gesturing and pointing to things she wanted me to look at, and I kept telling her to watch the road. Just look straight ahead. Just keep your eyes on where we're going. I felt really concerned about this, but my mom kept wanting me to see all the amazing things all around us. And then she drove off the cliff.
She didn't do it on purpose; I'm not even sure how it happened, whether she missed a turn or we just got too close to the edge. But we were free-falling, miles down, spinning through the air in the car. I was panicked-I was terrified-but in my dream all my fear was for my mother. And then I felt the voice. Not heard a voice; even though the words were very clear it was very much a voice I felt. All the voice said was, "I've got her," with the image of two hands together in a cupping shape.
The speed at which everything was happening changed. We were suddenly falling in slow motion, but I could still react at normal speed. I felt impressed to open the car door, and we climbed out of the car as it was falling. The moment we were outside the car it returned to normal speed and crashed below us. It landed on the canyon floor with shrieks and groans of twisting metal and shattering glass. My mom and I were still falling in slow motion, and reached out one hand each and grabbed the nearest pillar of rock. Then we climbed down as easily as one would climb down a very sturdy ladder.
At the base of the rock there was an old wooden barn. It wrapped around the stone so the only way to get to the ground was to go into the barn. Once inside and on the ground, I tried everything I could think of to escape. Everything that is, until my mom said, "Did you try the door?" It was not locked. We opened the door, and went outside into the bright sunlight.
After that my dream got indistinct and blurry and abstract, in the way of most normal dreams. The next day at work I kept getting poked in the brain with the thought I should tell my mother about the dream. I am not the most subtle or immediately obedient of creatures, so it took until nearly lunchtime before the poking got annoying enough for me to take action. I went on break and called my mom, who listens to me patiently and asked me about all the other parts of my life. I think the only comment she made about the dream itself was something to the effect of, "Oh, that's nice."
I think the dream must've happened in April or May. It was warm but not hot outside, and more relevant we hadn't gone to Wyoming yet. We had a family reunion in Green River in early June where my sister and brother-in-law live. We went camping, hiking, 4-wheeling, boating, and horseback riding, and for the most part, it was glorious. Until my mom broke her back falling off a horse.
It wasn't the rider's fault or the horse's fault or the fault of the deer that spooked it, just one of those things that happens in life when the horse goes one way and the rider goes the other, and my mom fell off hard onto a slope and came to rest on an ant hill.
She broke her L2, among other lesser damage. She couldn't walk and was in a great deal of pain. After several ER trips and one excruciating drive we got her back home to Payson. My wonderful husband and fantastic boss arranged it so that I could stay with her there and take care of her for the first two weeks, making sure she got her medicine and food and water in the appropriate amounts and times and tried to keep her engaged and occupied until she could get up and move around on her own.
Then in August my parents were in a car accident. Not a small one, but one that totaled their minivan and refractured her L2 and left her with disc herniation of C6 and damage everywhere in between. More ER visits, more back pain, more physical therapy to try and get back some normalcy. I wasn't around for any of this one, but heard about it extensively from family in the area.
My amazing mother recovered somewhat and went back to most of her daily routine. Thanksgiving rolled around and I, still being in Texas, called my parents to wish them a happy holiday and connect with those for whom I am grateful. On the phone, I mentioned to my mom that she sounded a little strange, like she was having trouble pronouncing certain words. There was a long pause, and then she admitted that the left side of her face was drooping. My sister-in-law had noticed and commented on it at dinner earlier that day. My sister-in-law being an excellent and intelligent person also did some quick testing to see if my mother had perhaps had a stroke, but that did not seem to be the case. My mom decided it was likely Bell's Palsy, and ignored it for a few more days.
That Saturday, though, she went to see her doctor. He was concerned and sent her to the hospital in Payson for an MRI, thinking that the imaging would show she had, in fact, suffered a stroke. But that wasn't what they found.
Lesions. It's an ugly word; it sounds both like open wounds and attacking armies. The MRI said there were several lesions in the right temporal and right parietal lobes of her brain. No sign of a stroke. But the lesions (that word again, I hate that word) were large enough and concerning enough that the transferred her to Utah Valley Regional Medical Center that day. They ran blood tests and urine screenings and CT scans, all of which came back with either negative or inconclusive results. Suddenly we were tossing around words like "tumifactive MS," "Metastatic disease," and "cerebrospinal fluid." They did a lumbar puncture the next day, Sunday, which was coincidentally also her 59th birthday, and she told me later that everyone in the hospital flinched every time they had to scan her wristband with her name and birth date.
By the time they did a brain biopsy I had reached my limit of calm and burst into tears at work, the kind of harsh, gasping sobs that burn your throat as they come out. My boss, who is a psychologist and an incredible human being, got out of me what was going on. Within an hour he and his wife had gotten a plane ticket for me to go out to Utah and be with my parents.
I arrived...honestly I don't remember what day. Sometime the first week of December. My mom was weak and pale and thin and laying in bed, but she was very much still HER. I looked around the room and immediately started reorganizing things to make it more convenient for her to reach her glasses or her water bottle and to charge her phone and iPad and phone case and cleared out everything that was irrelevant or in the way. Then I brushed and braided her hair, most of which was as long as ever except one small area above her right ear. Then I held her hand and layer on the bed next to her.
That became a pattern over the next several days, where I would bring her food and water and help care for her and we would talk and share and watch HGTV together. I bought her new clothes, because she'd lost almost 40 pounds. Her left hand was weak and shaky after the surgery, so I would open bottles and help her put on her reading glasses. Her left leg started feeling weak, so we would walk around the bedroom and the top floor of her house together. She seemed to be getting stronger and eating more.
She was given a priesthood blessing that promised her the upcoming Monday would be "Good news," and that her body would be healed. She was very comforted. This wasn't the only blessing she'd received that promised she would be all right.
I flew home Friday the 11th of December to see my family and take care of some things I'd committed to do, and came back Sunday night the 13th. I'd been gone less than 48 hours. She, however, was much worse.
She could barely walk or use her left hand at all. She hadn't been eating as well and stopped taking the anti-inflammatory medications and her skin was pale with grey undertones. I made her warm food and made her eat it, and helped her shower and get clean clothes on again. Then to all our surprise my sister showed up! She had driven down from Wyoming to be with my parents for the next few days, to help and be supportive and supported.
Then came December 14th. It was this day, this Monday, that was my parents' 38th wedding anniversary. It was also the day of the follow up appointment with the neurosurgeon to get the biopsy results. Historically in our family these sorts of things always go the same way; something goes haywire, we get a bunch of testing done, we go to get the results of the final test and the doctor/specialist says, "Well, the tests are inconclusive so we don't know what caused your seizure/collapse/intense allergic reaction, so go back home and let us know if the symptoms get worse."
So that's what I was expecting. My mother had gotten so weak that I asked a hospital tech to find a wheelchair for us so my mom wouldn't have to walk from the parking lot into the office. When the neurosurgeon finally met with us and saw her he was visibly upset. "You've gotten a lot worse since I saw you last," he commented. I tried REALLY hard and kept my mouth shut over my snarky comment. But they didn't have the results yet from the biopsy; they were still with a specialist in Salt Lake.
The neurosurgeon called the other specialist and told them to send us the results immediately. Then he sent one of his two assistants to wait by the fax machine and to call every 10 minutes until the results came. In the meantime, he sat with us and asked questions about how she was doing and what had been happening. This was his introduction to me, with my manic organization and memory and research skills. I had a list of about 25 questions I thought we should have answered.
His assistant came back with the fax, and he sat and read it while we watched him. Stared at him. I left my chair and went to sit on the floor next to my mom and hold her hand and rest my head against her knee, like I used to do when I was little and sleepy or afraid.
The doctor looked up. "This is not good news," he said. "I don't know of any way to make this better for you. Dr. Palmer at the University of Utah has looked at the biopsy and studied it closely for days now, and she is certain that you have glioblastoma multiforme stage IV."
We kept staring at him. None of us changed expression; I don't think any of us moved. "It's the most aggressive form of brain cancer," the doctor continued. "And stage IV is the final stage." He went on talking about tumors and surgery and chemotherapy and radiation and treatments. And how this was going to be the thing that killed her. He said that five or six times in different ways to the point where I wanted to scream at him.
But I didn't. We all stayed quiet. Then he left to see about getting her admitted to the hospital right away, and took his assistants and left us in the room.
In my head, I call that the first day.