Final Days?

Lisa Bowes is moving toward death after almost 2 1/2 years of showing us how to live every day to its fullest.

She is withdrawn, sleeping most of the time and has stopped eating.  She is confused and agitated often but medication helps.  All of this is to be expected.  She expresses that she is ready to die and her family supports her.

Lisa is under care of Hospice of Kaiser and is also supported by ResoultionCare in Humboldt County.



A hard day’s night 

This has been a pretty hard couple of weeks. I’m having a really difficult time concentrating and putting words together to make sense.

At Molly’s graduation I asked Jacob why one of the kids in his class wasn’t in the choir. He looked at me like I was crazy because that kid was in his eighth grade class, not Molly’s. This morning I asked Reil for “scrambeggs.”

My words are not always coming out correctly. Luckily I can mostly make sense especially if people are patient.

I have a difficult time reading and writing. It takes a long time for me to put words together, whether writing or speaking.

On the physical side of things, my legs are weak and mostly can’t move on their own. I’ve been dozing most of the time and, in general, I need help moving around.

I currently have thrush in my mouth which makes eating and talking very painful.

I’m looking forward to Jacob coming home from Germany where he has been for almost two weeks.

That will round off my three major goals: Molly’s graduation, Jacob’s trip and missing my 30th class reunion.

Shitty Day

I’m crushed. 

My nurse wants me completely off my legs.  This means no using the toilet or commode. Not being able to transfer outside. Only being able to get into me my wheelchair by means of a large lift which will take much of my room. 

I’ll need diapers. And while I can picture myself sitting in my pee for most of the day, I can’t picture the same with my shit.  And I have a hard time expecting those who have been caring for me to wipe my ass. 

I’m worried about the cost of care, and how long I’ll need it. I’m not in any pain, which makes it all worse to me, since it feels like I’m just going to have to go through this longer.

Not that I want to die.  I just don’t want to live like this.

I’m hoping to go to bed tonight and find some calm and clearness. I don’t see it. 

I’m pissy

I’m not very happy with the state I’m in. I’m still struggling with the food and mouth issues. I eat very little and my mouth tastes disgusting the rest of the time. 

I tried walking more around the house, and I’m hoping that is the reason I haven’t been able to lift myself from the commode by myself this week.  The lack of strength and independence frustrates and scares me.  Taking steps backwards instead of forewords scares me.

I’ve also got a sore on my ass, and they haven’t yet gotten me anything to help with it. So that makes me even more cranky. 

Milkshakes, Rattle, and Roll

My new, skinnier wheelchair arrived last Monday, and boy does she make a difference.  I can move myself from my bed all around the house. It takes energy, but it can be done!

Last Tuesday, I had another seizure. This time I was in the new wheelchair, reaching for my phone.  When I couldn’t get my hand to go where I wanted, I realized a seizure was coming on. I had Reil rush me into my bed, where I shook it out. It was comforting to be able to recognize what was coming. 

Over the weekend I took my first trip outside. We used the stair lift to get me down to street level through the garage, the wheelchair to the car, and then took a quick trip to McDonalds drive thru. Next time maybe a quick picnic at the park. 

Food is a little hard for me. I’ve got dry mouth, and lots of foods don’t taste right or leave nasty after tastes. Sometimes I take a bite and that’s it, other times it’s all good. Never know. And the fact that some of the foods that I want to eat make my blood sugar even higher doesn’t help. Ugh. 


I feel like each of my posts or days may be more full of self pity than the last.  My brain seems a little more clear – when l’m not sleeping.  But still not quite enough to rouse me into doing anything.

I feel trapped in my body.  There’s not much strength. I can’t get around much without others – no autonomy.

I sat in my wheelchair in my room today, and organized a few things on the table which is too tall for me to use. My arms and hands might not be strong enough anyhow.  But I got to see a different view for a little while. And there might be another table to use.

I think that next Friday I’ll receive a new chair which is not so wide and will go through my door, and give me access to the whole house.  I wouldn’t feel so trapped.

Of course none of this matters if my body won’t stay awake. Or if I can’t find motivation, which somehow seem related.

The last few weeks

Earlier this week I was trying to remember the exact reasons why I had gone into hospice. So I went back to read over my blog and found that I had forgotten going through radiation on my legs or my head. I couldn’t remember if my seizure came first or if going to see Wicked came first. These losses in my memory were scary and overwhelming.
But it’s scary and overwhelming as that may be it’s really quite understandable. I’ve been going through so much with each week or even part of the week bringing up some sort of crisis some sort of “one thing after another”. Between all that I was dealing with emotionally and then having drug interactions with my body I just couldn’t take anymore. At some point in April everything just crashed – body, mind, soul.

I shut down. I didn’t talk to anyone. I had thoughts of self harm. I cut off all my hair instead. I call them my black weeks – about two weeks of just feeling nothing, not able to cope with anything. I did have a lot of help with Reil and my family and hospice coming in daily.

I still don’t have a timeline really of when every thing happened but I know that after my black weeks I had a little bit of time and then had my cancerversary celebrating two years of my diagnosis. It was a very nice get together, though tiring.

Two nights after the party, I took fall at night when I was trying to go to the bathroom. That’s changed everything, because hospice and everyone wants me to have someone with me at all times. It’s been kind of a drag because I’m a person who likes to have a lot of time alone. However I also recognize I don’t have the strength to be walking around the house by myself or even to get to the toilet by myself.

My fall didn’t really hurt me except for a slightly pulled muscle in my back, however it did take most of my energy. I’ve spent most my time in bed trying to get energy back. It’s been a pretty boring journey since then but I am now able to walk into my living room but with help, it’s always with help. And those journeys into the living room also cost me a lot of energy. So I’m still working on it but I have faith that I’m going to have energy again and get it out of my bedroom more often and out of the house.

So that’s what’s been going on physically in my life. I have had a whole lot of emotional stuff going on too, but I’m finding that as I get stronger physically, Much of the emotional stuff is kind of working it’s way out and I’m very glad about that. 

More later. 

Brain games

I’m going through lots of ups and downs.

My brain doesn’t work like it used to.  Language is a struggle. Today I was able to to recall the words “pulled  a muscle” for the first time since I fell on Monday. Score one for word recall. But it’s not all been that easy.  The frustration has been growing. I’ve recognized that I like nuanced language, but can’t manage it, so I have to accept other things will have to work. People will understand me. 

I over did myself on Thursday and have have really had to cut back. I feel more energy today but it’s still going to be a few more days of nothingness. 

For any sort of reference, this sort of post takes me about 8-12 minutes to write  – at least twice what it used too. 

It seems like  a one note tune here sometimes – how do we keep up every little or big thing going on. 

After my seizure,  I started on anti-seizure medicine, and tried to get back to normal.  However, two weeks ago today, it became clear that the med (Keppra) wasn’t going to cooperate.  I was hit by depression and thoughts of self harm. Reil and the hospice team jumped right in.  

The social work team was there every day helping me work through some of /most of my immediate emotional issues. The doctors and nurses getting me through the medical ones. 

We are are in the process of changing the anti-seizure medicine to Depacote, but had to wait til that hit full strength before reducing the the Keppra. The combo of the two meds was very fatiging.

Luckily I am starting the decrease of the Keppra, and I feel more energy every day.   But I I also notice more issues with my brain  – probably due to my metastases – slower thought process etc. Whatever.  Just trying to work with it. 

I did take two falls this week end, so my nurse and I  will talk about that today    and I think that has to be the end of this post now.