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.

The sniffles

Shannon had a day full of napping, followed by watching a video a few of her friends put together, then a bit of football. She especially enjoyed the video of her friends and their kids and pets who were determined to make their presence known. The "mommy is the best jungle gym" made me laugh too.

She isn't eating as much, she picks her favorite parts of the meal and ignores the rest. She even turned down apple pie (I ate it, she wasn't missing much). Her scoliosis isn't helping her comfort much, she shifts alot due to the back pain. I have to keep telling the staff her pain levels:

1-3 - "I'm Okay"

4-9 - "I'm Fine"

10 - *goes cross-eyed and hisses*

Other than that she was snotty today from allergies. Apparently there is no escaping them in Texas. Not even the cold weather, cold being relative of course.

Meds meds and more meds

Shannon continues to do alright. Not much changing. She continues to confound the staff, working her bedpan out when they were convinced that couldn't happen, trying to stand to go to the bathroom when she cannot even sit up.

They cut back on some of the worst sedative drugs, she was able to stay awake most of today and enjoyed a call from her uncle yesterday. 

I am noticing more paralysis in the right side of her face, she mumbles a lot more and is harder to understand. She's still having the petite seizures, she's had those for over a year now so that's nothing new. 

Her memory and comprehension are still good when she's fully awake, but her ability to express herself gets worse. The tumors progression seems determined to make her miserable. Still, we watched some TV today and she laughed at some of the jokes.

Not homeward bound

    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.

Hospice hospitality

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.

Time

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.

Back to the hospital

Hi all, Rock here -

      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. 

Still being stubborn

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)

I live!

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!

                               

Montana's in Texas! (Not just us)

     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:

Sudden development...

Shannon felt it necessary to let everyone know one of her fingers she cannot close fully and it twitches open if she thinks about it. To keep a sense of suspense I will not tell you which one. But should you see her, she's not trying to be rude, it's just how it is.

Seven doctors walk into a bar . . .

(Many thanks to my incredible husband for typing, lettering, driving, etc.  Please contact him to contact  me . . . my finally round of brain has made it literally impossible to read/writing/talking skills are headed off to bite the dust - Shannon)

        Things are not good for Shannon right now. Over the past two months she's had to quit teaching (the Texas school system is a nightmare to begin with), cannot drive, and her memory is becoming sketchy. Perhaps the worst part is her ability to communicate is being affected. She cannot read, write, type, or speak clearly. Most of the time she can understand words spoken but its about 90% right now. She`ll not be able to read or write this blog.
        Last Monday we met with our first doctor to try to assist with her cognitive issues, November she was able to teach, January she couldn't reliably form a sentence. A regime of vitamins and supplements were added. I noticed a small improvement, mostly in her memory, but her speaking became better as well.
 Early Wednesday we met with a small heard of doctors, assistants and others. We had an MRI done, followed by labs, then finally the consultation. One of the doctors-in-training did neurological tests upon Shannon, including testing her ability to speak, read, and move her limbs. Despite doing better than she had been, in my opinion, she started to have a mental breakdown during the exercises. I think she had been denying her condition to herself, but after failing so publicly, without me being able to cover for her it hit her.
        The MRI results are bad, we didn't take a picture, but not only is it growing in new areas, there are little spots that are also growing away from the primary tumors. The one growing in her language center has slowed, but it is again greatly displacing her brains shape. The doctors at that meeting were less than optimistic, their best seemed to be do radiation and take pills. Neither of which have had a track record of great success. The one good thing that did come from that consultation was getting Shannon on steroids to reduce swelling. That has improved both her cognitive functions as well as her ability to read and write. She was able to write the first paragraph with only some help. Lastly they recommended seeing another doctor for radiation assessments.
       Friday we met with the radiologist, the doctor did recommend a course of radiation, it has been several years. I have my doubts, they didn't seem to do much before, and this would be a significantly less powerful version. We also wanted to speak with a surgeon, the tumor on the MRI seems predominately on the outer side of the brain.
       Later Friday we saw a surgeon who was, to our surprise, not on the autism/Asperger scale. She was very nice, friendly and empathetic. She also did not recommend surgery as the first option. I was a bit disappointed, I had hoped that they could do some testing to see how much her left side is actually doing, and see if a large scale removal would be possible. Neither are, not without very significant risk. She did however suggest that after radiation, they would see if any areas are still growing, and if possible they will use surgery to remove the ones not responding to the radiation. 
       So the plan is radiation, followed by avastin pills, many more MRI's and possibly surgery. 

       Shannon is not doing well mentally. She`ll deny it, but with realizing how bad her condition has degraded, having 2/3 doctors be less than positive about a prognosis, and not having the energy to fight has made her emotions very irregular. She's afraid, and there's lots to fear.

       Doctors didn't give much reason to hope, she could be gone in the next few years, or it could be the next few months. I`ll try to keep everyone updated, but I`m already taxed being both brains. Shannon is also exhausted frequently, cannot read, and doesn`t trust herself to speak. If you call and she doesn`t answer leave a message. Otherwise I`ll try to read any messages to her.