Shannon is doing well. Almost too well. Though she hasn't regained any ability to walk, talk, or body function. She can eat, sleep, and survive without being hooked up to a machine. That's apparently the line she's stuck on, the hospice facility she wants to stay at wants to discharge her possibly Monday, since she's not actively dying fast enough for them. She doesn't want to go home so I'll figure something out.
She's sleeping most the day due to her medication. She sleeps so hard it's difficult to get her to wake. That's what counts as treating her seizures successfully, putting her in a half coma. We had friends drop by today, dropping off cookies. Was good for her to see someone besides me and doctors, and she actually remembered them later too, which is big. It helps they brought their cute kids along.
Some flowers from my aunt's arrived too, she likes the hydrangeas.
Tomorrow we'll be bringing her Thanksgiving and watching the game. We'll be rooting on the Cowboys, but mostly because they're not taking on the Broncos or Seahawks.
Shannon has made it to a hospice facility. It's something between a hospital and a hotel in feel.
I was worried Shannon would be lingering for a long time, but today she got a bit worse. She can still speak, eat, and move her left arm and leg, but she's having shortness of breath at times. She's miserable right now, I can only hope she feels a bit more comfortable as she settles a bit.
The staff is not as highly trained, but they're also not nurses, just caretakers.
The new medication makes Shannon groggy, which doesn't help her communicate at all. Hopefully it will help her sleep better.
Shannon decided today, and I doubled checked with her a few times, that she will not be persuing any further treatments for her tumors. The best that any doctor has offered is an extension of her current condition, which is not what she wants. She's at peace with her decision, as am I.
She doesn't want to go home, stubbornness I think, so we're finding a facility she can stay at and receive the care she wants.
All that being said, brain tumors are unpredictable, she may remain in her current state for months, she may get completely non-communicative, she may pass before I finish this blog. Though she's stubborn enough to make that not happen I think.
That's all for now, I'll be updating this when there's something new to report.
Shannon is back in the hospital from complications with her brain tumor. Over the last three weeks she's been having more and more issue. Her right side first wasn't responding then was completely numb. She stubbornly refused help the whole time. Last week we found out from another MRI the mass has increased and is also having other growths showing across the other side of the brain. We started steroids but they had little impact.
Over the weekend she got progressively worse, we were trying to get on a chemo but Tuesday I found Shannon hunched over on the ground where she could no longer get back up. Called an ambulance and got her to the hospital, a new one so they have a million questions we've answered a million times other places. Tuesday she was borderline unable to understand or communicate better than yes or no's.
She currently is a little better. She can feed herself with her left hand but her whole right side is still useless for her. She cannot stand and is exhausted rolling over. She can feed herself as long as it only needs one hand. If she's a bit better tomorrow we may try utinsels.
We are waiting results for an EKG. They want to see her siezures, and even though one saw it in person they want the test. Unfortunately they didn't get the alarm set correctly so the first two didn't get recorded, and since they fixed it she's been fine.
Shannon is tired, both physically and emotionally. Not being able to speak, read or write was difficult enough. Now not being able to take care of herself at all has her really down. She doesn't have a lot of hope that any treatments can be done to help her recover, and there's not a lot of options left. We are in the process of figuring out if she can or wants to go home, or if she needs to go to a care facility.
I'm doing fine, so quit asking. I know you all want to do something, but there's not much to be done right now. She cannot speak or read but if you wish to leave a message I'll see that she gets it.
I am happy to say that a couple months post by limited radiation treatment has made my brain tumor lazy! The largest thing about this MRI today was to see what had occurred in my brain since the latest radiation. The first round of MRI post radiation back in April by take-over-by-brain was swollen and not thrilled about what just happen to it for two weeks. Now, two months later, by tumor is still present, however, all the swelling that occurred previously has ended! In other words, the tumor was growing actively two months ago, but as of today, my brainy brain (say that ten times fast 😉) is not irritated tumor has just become a dormant volcano. In about two months another round of the same information gathered today will pop up again in a couple months. I'll take every couple months I can!
(My incredible husband is still awesome for editing by typing)
One good thing being now retired is that I can read/write now thanks to completion to my "only way to do this is through doing the only option in radiation to be stubborn with my brain". When a specialized doctors in brain-specialized really has been a pleasant position.
The end of everything thus far is both good and very crappy:
Good: The source of my regrowth as been identified! Bad: They are "well-crap" that my very aggressive is from part radiation treatment from the past.
Good: No need for me to walk down the street. Bad: Seizures have hit any where from a couple days every week. All it is vary annoying to me when I couple seconds "black-out". However, I am glad my seizure is a nice zone-out from forgetting thing could be a lot on the worth level; having a lazy brain is okay to me!
Good: I can now read/writing at about a 50/50 chance. Bad: I takes be about 2-3 minutes to read an sentence, but cannot remember in it my the end of it (my incredible husband is by read/writing buddy).
Good: My husband can read minds! He can figure out any missed from brain missing letters and numbers. Bad: To be able to say a full sentence as become by annoying to be. Talk to me about every science in second, but after two of three sentences I can't.
As a sign of my current skills for writing/reading/talking skills, I am now done with last typing of an hour and a half. If my current new brain tumor to the end of 2020, then a tattoo for the new rebelled tumor for as long as I can!
The other day Shannon and I spotted a classic car. While that's not incredibly unusual, what was more rare was the Montana license plate (Missoula)! I couldn`t get much on it, heavy traffic, but it was a maroon convertible, rounded shapes in the back and more flat in the front. It made Shannon very excited.
Shannon is on steroids, which have returned a lot of her functionality. She's even complaining about my proof reading, to witch I say byte mi! Anyways, you may see her liking or even short responses. She can usually get a short sentence or a few words at a time. Some days are better than others, but she's overall much more functional.
It is a double edged sword however, with her increased awareness of her condition she also is more aware of how far she has regressed. This can impact her mood from time to time. The bloating isn`t helping her self image either.
Radiation began this week. Shannon likes how quick and accurate it seems. She describes it though like the creepy robot-alien from lost in space (the new one). It apparently is only millimeters from your face as it does its work.
So far we haven`t had any serious complications, no noticeable swelling or neurological issues. The only current side effect is she can feel the heat on her skin like a sunburn. We've picked up some aloe, though if anyone knows something better let us know!
- PS - Murphy has replaced Shannon in judging my grammar:
