The good news for the day is mom is holding steady. She has been moved to a regular inpatient room, and they are working to move her to rehab. Previously, we hoped to bring her closer to home for rehab, but because her stay in the hospital has been longer than anticipated, and because the cancer is more aggressive than expected, we are now trying to have her rehab at the hospital so we can start her radiation and chemo while she is doing her rehab.
Today was a quiet day in terms of visitors. Our cousin came up to visit and help with the baby, and my father, brother, DH and I were all there for a few hours today. DH and I showed up first around 12:15 (we had to take Maya for her 2 month checkup this morning - she did well, weighs 10 lbs 2 ozs, measured 22 1/2 inches, got 2 shots and an oral vaccine). My cousin came up to visit shortly thereafter, followed by my father and then my brother. My mom was a lot of fun today - cracking jokes and acting just like herself. She kept telling DH that she'd break his fingers if he stole her food (she makes fun of him for eating so much). I love watching her "hassle" the nurses about giving her the shots and not letting her eat good food. We talked to the nurses about getting permission for her to see her grandchildren, and we are hoping that in the next day or two they will allow us to take her off the floor and to a location where we can bring the kids for a visit. I think that will do more for her than any medicine. She has been in great spirits, and is resolved to work hard to get better. DH and I only stayed until 4 because we had to get home to relieve the nanny.
In the past 2 days, she has had physical therapy, occupational therapy and speech language pathology evaluations. All have concluded that she would benefit from rehab. Physically, she is weak on the left side of her body, and she has a problem called hemianopsia - it means she has lost the left half of her vision in both of her eyes. The combination of vision loss and weakness has been affecting her balance (it is also possible that the tumor affected other balance centers, but we are hopeful it is just due to the vision loss and weakness). She will need physical therapy to build up her strength and work on her balance.
Occupational therapy will help her with safety awareness and coping mechanisms for handling her vision loss and her weaker arm/leg. She may need to learn new techniques for opening things, and techniques to maximize the use of the good vision that she has. There may also be technologies that can help her cope.
Finally, speech language pathology has concluded that there are no issues with her speech...but she is facing some challenges with language and cognition. Sometimes, she is slow to recall the proper words for things. Her more complex cognitive functions are a bit slower - things like remembering multiple step directions or repeating items on a long list are a bit harder for her right now. Therapy should help rebuild and sharpen some of those connectors.
We've been told that right now, her brain is like a computer...when you have too many programs open, it can sometimes slow it down. We have been encouraged to limit the distractions when she is trying to focus - so if she is eating, turn the tv off or limit conversation. When she is talking to people, turn off the tv and try to limit side conversations. We are supposed to allow her to focus on one thing at a time so she can maximize her capacity.
So...one more hurdle cleared. Next step - building her strength up so she can handle chemo and radiation. Let's hope she has enough time to get there.
On a side note, while I sit here trying to be positive...I'm still really ANGRY. I can't stop thinking about all the "what-ifs." My mom always tells me that the "what-ifs" can make you crazy, but...what-if? What-if the first hospital had caught the tumor and we could have done this surgery and started chemo before she lost her ability to walk and see? What if 3 months ago, the cancer had not penetrated as much as her brain and surgery could have removed 90% of the tumor, making her eligible for the chemo wafers? What if we started attacking this tumor before it became so aggressive? What if catching it earlier couldn't give her a single extra day of life, but it could have given us more time to enjoy the time she has left, or better quality of life? What if getting a diagnosis in May prevented her from thinking she was crazy for 3 months? Being sick without a diagnosis took a horrible toll on my mother, and she was frustrated that she couldn't do anything about it. Every time I think about that, I get angry. Angry that the first hospital released her without a diagnosis. Angry that the unexplained nausea did not trigger a CT scan sooner. Angry that the ophthalmologist who examined her eyes in June, and again in July and August didn't recognize that the changes he was seeing as intra-cranial pressure and send her to a neurologist. Angry that no one picked up on her weakening left side. Why is it that these medical professionals missed it for so long? I have to think that catching it earlier could have given my mom more of a fighting chance - removing more surgically, taking advantage of the chemo wafer protocol, starting radiation and chemo before the tentacles of this tumor spread and burrowed deep into her brain...more.
As my mother always says, that and $.50 will get you nothing. But...what if?
18 months in review
2 weeks ago