Breathe easy

After about three days of Shannon having difficult breathing she's able to relax a bit more now. Some medicine to reduce saliva and the occasional suction has kept her in relative comfort.

Her eyes are open, but she seems unable to focus on anything or anyone. She is concious enough to smile when I tell a joke or too. I keep reminding her she was going to get a tattoo if she made it to the new year. Just a few hours now. 

     As fun as it would be to have a tattoo artist in here, something tells me it would be problematic for many reasons. I think I'll order one of those press-on tattoos. For those that didn't know, she wanted a pink and the brain tattoo, though she never got a design or anything put together before being unable to communicate.

    It's a surreal world we live in right now. I hear several news reports that some funeral homes have to turn people away. They cannot process bodies fast enough. Trying to get final arrangements made during a pandemic is about as difficult as you'd imagine, or worse, have had to do yourselves.

    Shannon wanted her body donated to science, apparently two universities have programs for that. I wonder if she'd get a priority with her very rare tumor.

Rise and fall

     Shannon has taken a downward turn. Yesterday she barely ate (one fishstick and two bites of cake) and slept almost constantly. Today she hasn't even awoke to any degree. They have upgraded her care level because of that and her breathing.

     For going on nine years I have been watching her breathe. If you didn't know she's a deep sleeper and often holds her breath for several seconds between. I lost count of how many times I would awake and have to watch her very closely to see her rise and fall. Woke her up a few times when I couldn't tell. It's been a real fear that I would wakeup one day and she'd be gone, brain aneurysms are much more likely with brain tumor and surgeries. Honestly that's a fear I could live with, at least she'd go peacefully.

        Now I sit and watch her struggle to continue to breathe. She isn't in a coma, but she's not really here either. When she chokes on her spit she coughs and they have to suction her mouth, her eyes open but there's no recognition in them. She's in the perpetual limbo between awake and asleep and cannot get to one or the other. I think sometimes she dreams, her eyes move under her eyelids, I wonder what she dreams. Probably about teaching.

       I hope the end isn't far. She's had to suffer through all this, all I can ask for is peace for her and myself. 

When!

Merry Christmas everyone. Shannon is still doing about the same. She got a lot of sweets for Christmas and I was able to stay overnight. I can stay overnight anytime, but my spine has only recently forgiven me. 

Had a breakthrough yesterday in the 'When' department. In the evening she kept asking again, finally I got her to respond asking if she wanted to know when I was going to leave. Then she wanted to know when I would be back. She then asked again, and again, and several more times. Eventually it set in.

When...

Shannons vocabulary is down to two words. "No" and "When", she has a few other vocalizations, but those are the only real words that come out. I have no idea if when is her trying to say a different word and failing, or she's trying to ask about something in the future or past. I exhausted all the options I could think of. She eventually went to sleep though not before kicked her blankets off, then wanting them back a few times.

Right now the only when she needs to be concerned with is when she goes to the bathroom. She's been backed up for a long time, six days. They say she's not compacted or blocked, but they're also going to have to do some more work to keep her functioning normally.

I know her words got worse the last time she was backed up as well. Hopefully those getting cleared will help her as well.

The grinch stops by

Shannon is okay. Not as loopy or sleepy as over the weekend. Yesterday she told me she was bored, there's not much for her to do and TV only does so much. I've never been much of an entertainer, working on that, but her attention span doesn't work for a D&D game.

She had a coughing fit after having medication go down the wrong tube. The numbness in her right side probably playing a large part in that. For nearly an hour she almost vomited due to coughing. They got more anti-nausia meds in her and she was able to eat dinner. I still don't know why they don't use her IV. 

They did come by with a bit of holiday spirit. A surprisingly good Grinch, whom played the part excellently, even with the slouch and the walk. Shannon was too stunned to say no to pictures.

The cruel joke of the human body

Shannon is still doing okay. However she is now having a much harder time even forming word. Getting a yes or no has become difficult. She seems to be unable to form the words. 

The good news is she still enjoys her Mt. DEW and Judge Judy. I'm curious about the covid vaccine roll out. She technically is in a long term care facility, but I don't know if hospices will count. 

Today she had bad pain in her legs, which is the only thing she can feel in her right side. Seems unfair, but that's just one more cruel prank if the human body. They gave her pain meds and she is feeling better. 

Soul mind and body

      Shannon is doing fine. In no major pain or complications, she occasionally has some heavy breathing then it resolves. 

     She occasionally gets frustrated and it causes her to have emotional breakdowns. Especially when she knows what she wants to say, but the words do not come out or what does come out is incomplete and I cannot guess it. She cries and there's little I can do but hold her and let her cry it out. 

      I feel she's in an odd place, her body is mostly healthy, her heart, lungs and organs are all in good shape. Her mind is there too, but it is disconnected from her body in fundamental ways. She remembers things, experiences and stories. Her soul is the hardest for me to judge. Even now she's stubborn and proud, refusing to express emotions until they overtake her and she has a breakdown. Has been one of the worst parts of our marriage. 

      Her soul is pained, of that I am certain. She is stuck in a body she cannot control, with a mind she cannot trust. I feel she doesn't want to die, but she can see no way to live a life.

They moved a new person in next door just a couple of days ago, maybe Monday. Today when me and Shannon's sister's mother-in-law were waiting outside while the nurse gave her a bath the new person was put in a body bag and taken away. I suspect they must have passed much earlier. There were no grieving relatives, no emergency alarms or sad music. Just a nurse directing a person to collect the body. Felt very surreal.

English is hard enough

Shannon's speech and strength are getting worse. Saturday she had a treatment to help her breath easier, it seems to have good lasting effects. She was having a lot of struggles to breath deeply and had a few times she was actually letting me know she was having trouble, which is big for her. 

Physically she's become much weaker, a lack of exercise and movement I suspect has added to that. She can still operate a spoon or fork, at least once the food is on it. She's better just grabbing the food and putting it in her mouth, which is what she tries regardless of the finger food status or not.

Her speech has become raspy and less intelligible. It's hard for even me to get an answer from her. By the time I ask her a second time she's forgotten about it. She has memory but refuses to remember any new ways of communicating. She starts with a slurred sentence, then drifts off and cannot finish. I try to guess from context, but I've gone from 90% to about 20% accurate.

English is hard enough without a brain tumor, boreline impossible with it.

The long dark tea-time of the soul

Shannon is doing okay. I have started sneaking her Mt.Dew, she takes from lunch to dinner to sip it.

She's largely unchanging. However yesterday she was having trouble breathing twice. The second time I got the nurse, who suggested morphine, which apparently helps. She then got distracted and forgot to get it. By the time she came pack Shannon had returned to normal. She's still having heavier breathing but she isn't feeling like she cannot get enough air.

I'm not a doctor, and unfortunately the location doesn't have blood oxygen monitoring. Which I find bizzare as every doctors office and hospital has them, they don't seem expensive or complicated. It may be because of her laying in bed for a long time, it may be a new symptom. Either way she's still going.

PS - Bonus points if you're nerdy enough for the title. 

Nostalgia

Apparently the tumor has not impacted the nostalgia part of Shannon yet. She's had an old friend visiting the last few days and has enjoyed catching up with her and what's she's been up to. It's been nice to have someone other than myself to talk to Shannon, me and here have been side by side almost 24 hours a day since her radiation treatment in April, so we don't have a lot to talk about. 

Shannon has settled into the regular care wing, they have her meds in decent shape so she's not sleeping all the time and is able to speak a bit more. 

Health wise she seems unchanged. She's not getting worse, but not recovering enough to take care of herself entirely. She seems comfortable but could just be her putting on a face.