Everything Is A Lot

My mother took my hand, as we were going to leave tonight, and she very deliberately, gently, and slowly pressed a kiss on the back of my hand. And at the look on her face, I clasped her hand back just as gently, but firmly, and I kissed her on her forehead. She smiled and let me go. 

Words are failing her. I find it ironic that the only way that I can process her now word-muddled existence is through my long practice with words. 

On November 13th, my sister and father did a video doctor's check with my mother. Their GP was so alarmed at her inability to truly respond to their questions made their primary doctor tell them that they had to go to the ER. That there was something seriously wrong with her and they had to get her looked at as quickly as possible. The three of them spend two horrific days in the over crowded ER at UCSD, in order to get the CAT scans and MRI that showed a very large shadow in her brain. 

This was while John and I were in Kauai. We heard the beginning reports as we were starting to pack up to go home, and as we went through our travel day things were getting more and more dire. By the time we got home, we started packing again, to leave on the Sunday evening after our Thursday night return. 

There is a young friend I have, who, unfortunately, has the same rage reactions that my sister and my father have when someone disagrees with them or their afraid of whatever might be coming, and knowing that I was going to have to deal with both of them for the next I don't know how long, I knew that I was going to go into my old ways and rip him a new one the next time he turned that rage on me. So I ended the friendship, with some stupid argument that he, as they would have, took as the whole reason why I didn't "want to be friends" with him. I knew I wasn't going to have the energy to be my best with him while I had to deal with them as well, so I needed him to be safe and well away from me. 

I don't think I'll forgive myself, but at least I know I won't hurt him even worse now. 

And so this could have started with the fact that I have often said, "There's a reason I moved 1200 miles away from my family." And there are. However, it didn't stop me from breaking down sobbing when I heard the initial takes that her tumor was so large that there is no way surgery could work. And knowing that it was only a matter of a few months that she got to where, as my sister put it, she's only talking in word salad, it was probably super aggressive. I hadn't thought I would be grieving so hard for someone I thought I didn't really like, but I am. And I have known for a while that I loved her, but I loved her more assuredly when I wasn't living with her. 

But with this breakdown of her capabilities, she's actually more willing and capable of expressing tenderness with that touch than she used to ever be able to be. She's hugging me now gladly. It's so odd that I don't remember her being this tender ever before, but I don't really... but it's amazing to me that all of this has now allowed her to be this way and for me to receive her care and reciprocate without any problems. 

When I was helping her with her bath, and I accidently turned out the shower as well as her bathing wand and we both got showered with cold water and she was yelling, "NO nononononono no!"  We were both shrieking and laughing like crazy together and it was so good in a way that it couldn't be without how bad we both know it was and how it might get. 

I'm jumping around on the timeline. I trust you'll be able to follow. 

John and I arrived on Sunday, the 17th, too late to make it for visiting hours at the hospital, so we went to El Indio's. He had the chili rellenos, I had a tamale, prepared, with tomatillo salsa. Comforting food. 

We spent the next week in and out of the Jacobs Medical Center. Mom had a biopsy on Monday. She had to recover from the surgery at the ICU for two days, and then was back in the hospital and had heart arrhythmia that kept her there longer until they gave her some heart medication to calm her heart rate. And it's possible that it was caused by the hospital stay. Most of the days at the hospital were in order to be there so that when the doctors appeared, we could talk with them, and they were so completely random about when they would come that it was insane. There was no telling when anyone would or wouldn't show up. The nurses that were in charge of my mom were great, always available and always coming in to check on her, and to do the tests that needed to be done, but it was exhausting. 

Dad is losing his second language, English. When someone speaks quickly, he cannot follow. So we were there to slow some folks down, and/or to reexplain things to him after a long, quick conversation so that he could catch up. His mind is fine. He just has a hard time getting input using English, but it really slows some conversations down. We had one language therapist come in who spoke both English and Mandarin as well as Cantonese, and that went much much better with Dad. 

The problem was that the interminable series of tests really enraged Dad. He was pretty much convinced that they were going to be made to stay forever, as the doctors kept saying that "they had to keep her another day" due to another test, sometimes about things that he thought were already fixed. The heart arrhythmia was supposed to be due to an imbalance in her thyroid mix, but he was convinced that was "already fixed" so why the hell were they keeping them for something that was already done?

The problem was that her thyroid levels were super low, and the hormone folks were, "Well, it could just be caused by her stay in the hospital." Which would only be prolonged if they recommended that she stay until her heart stabilized again. And they did an echo cardiogram and found that there was no evidence of it being a long-term thing. 

There was a part of me that wanted to ask of the afib was a problem that would actually make her quality of life worse if she only lived for four months, but I didn't want to jump to any conclusions and didn't want to alarm my parents. 

Part of the reasoning for the biopsy was due to the fact that Mom had had lung cancer before. There was a paper about an EGFR mutation in Asian Women associated with never-smoker lung cancer, which would lead to a possibility of treating the lung cancer with a genetically tailored solution, and because it was a virus delivered genetic treatment, some could slip past the blood brain barrier and actually shrink the tumor. Unluckily, the biopsy came back quickly, and it came back as a glioblastoma. 

By the time we were done talking with the endocrinologists, the nurse that was now in charge of Mom was also in on the crusade to get Mom discharged into Dad's care. By the sixth or seventh day, we were all convinced she needed to go home. The Physical Therapy and Occupational Therapy folks were all saying she could go to Home Care and didn't need Skilled Nursing, something Dad had thought she would go to for at least a few days before he could get their apartment ready to take her home. But because the assessments were so good, it would have been difficult to get her into the Skilled Nursing at Vi. 

He wasn't sure he could take care of her on his own. With us, however, he was willing to try. And John and he really got to work on finding home care help, both to do all the therapy, to manage her medications, and to just take care of Mom while Dad did what they needed to live. So with the extra days at the hospital because of the heart thing, we missed a few connections. 

Finally, on Friday, the 22nd of November, after eight days in the hospital and two days in the ER, Mom got to come home. It was such a relief for us all just to get her into the apartment, it was crazy. I got to help her wash the hospital off of her Saturday morning and we had our hilarity. Dad was grateful to find out that night time was just fine, and Mom could take care of herself. But being home also made it very clear that her week at the hospital had really set her back on what she felt she could do or should do, as well as making it starkly clear that she wasn't communicating with any reliability. 

We have been lining up the care so that we can experience it with Dad to get him to accept that he can use help. There are a bunch of oncology appointments early in the week and we'll know more of what's going on and what's possible and what's better for her quality of life.