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. 

Seizures and Showtunes 

Thursday evening, right before our potluck was supposed to begin, I went into my bathroom to get ready. 

The first indication that something was wrong was when I couldn’t move my right leg. The second was when my right arm, which hadn’t been working well, raised up over my head, and wouldn’t stop flapping. I fell onto the toilet, and tried to call for help, which I think sounded more like bleating. Reil came in and said “You’re having a seizure!”

So, yes. My first, and hopefully last, seizure.  Once I knew what it was, it became much less scary. Not so much for Reil, because he could see me frothing at the mouth. But I was alert the whole time, could watch my husband’s face, and just relax into it.  I couldn’t talk.  I couldn’t move, but ass deep in the toilet seemed as good a place to go with it. 

The paramedics got there in no time, and since they weren’t sure whether it was stroke or seizure, rushed me in the ambulance to the hospital, following stroke procedures.  CT scan, some observation, an increase in steroids, new anti-seizure mess, and I was home in just a few hours. 

One of the hospice nurses came over that night, and ended up being extremely comforting and helpful. 

The week since then has been a mixed bag. Lots of sleep.  Meeting my regular hospice nurse from Kaiser. Fatigue. Waiting for my arms to work again (Monday evening, mostly).

Most of my frustration has come from not having energy.  The days before the seizure I was sleeping 16-18 hours a day. Since then it’s slowly gotten better, but there’s never enough energy. 

My hope is that I can go a few weeks without any crises, and to be able to count on having enough energy most days to be creative in the morning, take a nap after lunch, and be awake when my family gets home in the afternoon.

Today gives me some hope for that. Molly and I were able to go see Wicked in San Francisco tonight. It felt like a little slice of extra special normal.  It gave me hope for much more from life than just laying around in bed all day. 

My first quilting goal this year was to make quilts for my husband and my kids.  Not the wall hangings that I usually make, but something larger that they can wrap themselves up in my love. 

My second goal was to do the same for my siblings.  I’ve almost accomplished those goals. Most are coming home from the quilter tonight. 

And now, once again, I’ve got that lazy/dumb/crippled arm.  It’s really affecting all my limbs, but mostly my right arm.  I feel worried that it’s not just exhaustion, that it’s progression of the brain mets. That I’m never going to get use back.  Because that means no more quilting, no more being creative in that way that means so much to me. 

I wasn’t planning on that. I hope it doesn’t come to that. 

In the meantime, I’m sleeping a lot. I can’t do much else. Everything just drags. It’s to the point that I don’t move from room to room if I don’t absolutely have to. 

I started on Kaiser hospice today, and I got a hospital bed. It’s not very comfortable when flat, but with head and knees up, it is nice. I’ve ordered a pad to go on top of the mattress. 

I feel like I’ve been a bear lately. I’m grumpy. I can’t remember words and that’s frustrating. I just want to be not so exhausted. 

Ups and downs

I remember when I was in my 30’s, with two young kids, reminiscing about how easy it was to stay up all night in college. Last Thursday I couldn’t fall asleep at all. I did get some rest, but no sleep. 

Three days later, even with sleep in the meantime, I’m dragging more than Friday, and wishing I had the bounce back of a healthy 30 something, let alone a college student.

What worries me that my limbs are all exhausted, like before the steroids kicked in, but not quite as severe.  I do think it is mostly exhaustion, as I did a lot yesterday, too. 

Mostly this reminds me to live to the moment.  Not to worry, but to just take care of myself right now. Nap, rest, eat good food.  Take my meds and vitamins. Use the oxygen. 

I also got the news that I’ve been accepted into the willed body program at UCSF, so that’s one more thing taken care of. 

I’ve still got an SSI disability snafu to work out. Later. 

Right now I’m going to make a list of letters to write.  As long as I can stay awake. 

What a difference a week makes. Thursday morning I could barely control my legs, and didn’t have the strength to walk more than a step or two, if that. My right arm was pretty much useless, and my left arm tired.

Now, after a week back on the full steroid regimen, I can walk straight, though painfully, I have full strength in the left arm, and nearly the same in the right. Hallelujah!

I’m continuing the quest to make life easier for myself. And, seriously, my favorite new thing is the bedside commode. If I weren’t already married to the love of my life…  

I ordered some wheelchair accessories – cup holder, gloves, two little side packs where I can keep wallet, phone, glucose stuff. It’s easier than a purse.  I’ve also been reading about wheelchair hints, which came in handy yesterday and today. 

Yesterday, I got to practice in Target. Getting around was good exercise, and the nice wide aisles were easy. Today, Reil dropped me off downtown, where I met a friend for shopping.  When we got to the dressing rooms, of course someone able bodied was in the wheelchair accessible room!  Grr.  

Later, when I went to the restroom, some old guy started pushing the chair for me. While I had my hands on the wheels!  Not good manners!

Overall, though, it was amazingly refreshing to be out of the house, getting around on my own, and feeling like a real person.  If this is life on hospice, bring it on!