I Finished this blog post late on Friday night. On Saturday morning at 5:30 am, Dad knocked on our bedroom door and told us to call 911. Mom was having a seizure. Here at the emergency room now. She is responsive and seems like herself right now. Alarmingly, she did not right after on the stretcher on our doorstep. She's getting a brain CT and other tests now and we should be able to see her again soon.This week has been full of ups and downs. A few short days ago, we hit the lowest point since Mom's diagnosis. And then Thursday, we somehow caught a warm current and are now rising back up.
Mom spent the majority of Monday in bed, asleep. On Tuesday, she had a rough morning, so Nathan and I went to her appointment with Dr. Carrillo while she rested at home. Instead of administering her intrathecal chemotherapy, which we had already decided to skip, he met with us. He was very generous with his time, and spent about 45 minutes discussing Mom's condition. He agreed that she should not have either chemo while she is this weak, and somewhat hesitantly admitted that her new symptoms could be caused by the chemo administered directly to her spinal fluid through the port in her head. There is no hint deceptiveness in his uncertainty. Rather, I think it is hard for anyone, no matter their training or expertise, to really pinpoint why she has had such a dramatic decline in her mobility. There are just too many variables.
When we returned home, Mom was awake; a good sign. She remained awake the majority of the afternoon, while she watched a KCET special on Italy (Rome! Venice!) and I tried to tidy and unpack. Their boxes have filled the garage, and are spilling out into the dining room. Because she has lost her taste, appetite and ability to keep food down, I tried very hard to offer her something small to eat every hour.
I would be grateful if I had a husband who was okay with Mom moving in. Instead, I have a husband who suggested it, and I will never forget that. It is amazing waking up and knowing she is just across the hall, and that this priceless gift is possible because of him. As I was trying to get her to eat every hour, I realized there is no way I would be able to offer this level of support and care if she didn't live here. And as making this situation possible makes me love him even more, he told me he is falling more in love with me because he sees me nurturing and caring for her. Other guys would be inconvenienced, annoyed, or jealous of the time I'm spending with her. Instead, he finds it attractive.
After our tidying and tv watching, I took her out to the patio in the backyard where all of her potted plants are and she held the hose to water them. She could tell the screens were dirty and gave them a good spray, and then watched while Nathan took them off and I windexed the windows. It wasn't high tea on the Queen Mary, but it was an activity we were able to do together, and she enjoyed feeling the sun on her back. She also started her physical therapy. Someone came to our home and had her do several exercises such as standing up from a seated position and, while holding on to the piano, briefly lifting one leg, and then the other.
On Wednesday, she had her gamma knife surgery (fifth time!) and it was a success. After getting the metal frame attached to her head, and an additional MRI she was "only" in the machine for 1 1/2 hours. She had some confusion, which is new, and asked me how work was even though I had been with her the entire time. We had the appetite stimulation prescription filled, and thankfully, she did start eating a little more.
Each day she was a little better, but Thursday brought the most improvement. It was around 5pm and my Dad was getting ready to go back over to their apartment to clean and move more items out. Mom announced I want to walk. Nathan, who has an alter ego named Hans that helps Mom walk, said Okay - where do you want to go? To the car, across the street! And across the street she went. We steadied her, and her steps were very small, but she did it! I left to take my Cat Isis to my friend's in Hollywood with a smile on my face almost the whole way. I called his Mom, excited to share the good news.
And that brings us to today. With those big gains yesterday, I was hoping for more. But, we always want more. More time, more dinners out, more vacations, more money, more...stuff. But this disease is teaching me that it isn't always about more. Yesterday, I was reminded that you can have just as good a time with simple pleasures and activities. Like helping Mom shower. We had a laugh when she asked me why I wasn't taking a picture, to post on facebook. When I retold Nate later, he exclaimed Mama DeWitt's back! and she smiled and pumped her fist in the air. I need to remember how she was just days ago and be thankful for the small improvements she's had, that she is now living with me, and that my husband not only loves her, but he loves me that more for loving her.