Penelope has died – 09/03/09

This is John.

Penelope hated the terms describing when people died of cancer.

‘they fought bravely and lost the battle’

I think she got this from Assertive Cancer Patient but I could well be wrong.  Forgive me if I am.  Again possibly from the same source or just her own muse she preferred the mental image of dancing with cancer.  Sometimes you lead, sometimes it leads.  This time, cancer lead, she could not keep up, she stumbled, fell and did not get up.  But I will say she danced bravely.  But that does not mean without fear.  She was absolutely numbingly terrified.  But being brave is doing what must be done whether you are scared or not.  And that she did.  Dougie Mclean has a song with a refrain that you may fall, but must not lie down.  Well, she did not…until then end.  This time when she fell, she could not get up.  She does not need to get up this time.

I am probably going to butcher this summary, but Penelope knew I didn’t have a sense for time.  She had that.  I don’t.  The details mattered to her.  I loved that.  I can’t do that.  It’s ok.

Approximately 5 years ago she had a nasty melanoma removed from her back right shoulder.  Plus a handful of lymph nodes.

She danced.  She healed.  She stayed vigilant.

In June of 2008 she started having trouble with her right leg.  She had two melanomas in her brain, in the motor strip.  She had gamma knife surgery.

She danced.  She healed.  She stayed vigilant.

We had two clean MRI and CT scans.

In  February of 2009 a new met was found in her left lung.  It was removed with amazingly less fuss than I thought possible.

She danced.  She healed.  She stayed vigilant.

In April 2009 her right foot started to drop again.  Scans still looked out.  By June she was using a wheelchair.  Dancing was harder and more tiring.  Her right arm was less responsive.

Scans show massive flair in the old mets.  They were not killed by the Gamma Knife. Her right leg was paralyzed.

August 6, 2009, exactly 1 year to the day when she had the gamma knife surgery, she had open brain surgery to remove the mets.  She came out of surgery worse than she went in.  Both legs paralyzed and her right arm.

Over the next month she danced as she could, trapped in a bed, dependent on other people for her most basic need.  She cried huge amounts.  She was terrified.  She danced on.  As she would say, it isn’t anything special – you just do what needs to be done. Her right arm came back 40%.  By the time she left the hospital 10 days later she could push a little with her legs.  After two weeks in rehab, she could flex her ankles.

She danced.  She healed.  She stayed vigilant. She was scared.  She cried. She danced.

Four days ago she decided she was going to go to her daughter’s school assembly.  She decided.  It was going to happen. She danced harder than ever to be able to go.

Two days ago cancer, her dance partner for the past 5 years tripped her.  Bastard.  Fucking BASTARD!!!!!  SON OF A BITCH FUCKING RAT BASTARD!!!!!!!!!!

During a shower, she started having trouble breathing.  It scared her.  She finished up and she passed Logan and Cheryl (her sister how is helping I can’t say how much) in the hall to her room and  said ‘Hi Logan’.  A little time later the paralysis that had been plaguing her dancing this last month, but didn’t stop her, took hold of her diaphragm and she stopped breathing.

Cancer cheated.  But we knew he would if he could.

I have no more right now.

We, Logan and I, will go on.  It isn’t anything special.  It’s just what you do.  Giving up is the alternative.  No way.  You go on.

I’m not superman.

It’s just what you do.

There is more to life

So life here has been pretty stressful recently.  And I don’t post about the rest of my life so much on this blog.   So here is a little bit about the rest of my life for a change:

As I type my daughter is alternating between dancing and telling me what her next art project will be (which involves pointing to the computer screen where she will draw various items).  We have roses blooming everywhere even though I haven’t been able to be out and prune or deadhead them this year.  And our weather, after one miserably hot spell, has been cool and even rainy some days.

In all those respects, life is pretty good.  At eight years old, my daughter has grown up listening to Little House on the Prairie.  (There is a series of books about Laura, her daughter Rose, her mother Caroline, and her grandmother and great-grandmother, plus the Laura series is on audio book so we listed to it repeatedly as we drove.)  We talked about it last night, the various difficulties Laura goes through and keeps going through.  Maybe that’s how she’s managing to take all this in stride.  When I told her earlier this week that eight year olds shouldn’t have to do this, she answered that she was almost nine.  On the subject of being like Laura, I told her there were more chores she could be doing — she said “no”.  She’s not dumb.  :-)

We don’t watch TV in our house.  John and I stopped when we moved across the country ten years ago and there wasn’t any TV reception where we moved to.  I don’t know how we’d fit the time in now.  We read.  We cook.  (I’ve been reading crock pot cook books and cooking thing in a crock pot.  Some of the recipes amaze me — people actually eat that stuff?  The cook books are as entertaining as fiction!  Why does every recipe that calls for tater tots also call for canned green beans?  Why do some recipes pre cook every thing and then put it all in the crock pot for twelve hours  — just in case twelve hours wasn’t enough to get all the ingredients done?)   I can go on for ages about that stuff.  I can read cook books for ages.  I’m fighting the urge to pack cook books for our trip out of town.  Maybe I’ll pack one or two for airplane reading instead of fiction.  I’ll have audio books for airplane fiction, if  I can get to the computer that lets me put them on the ipod.

In past years I’ve gardened.  I’ve been less able to each year, and I miss it each year.  I think we’ll be moving in to the city, and I hope that next year I can have some small garden beds.  I wouldn’t mind some flower beds, if I didn’t have to do much to them, but I like vegetable beds.  I like going out and being able to pick salad, and zucchini and cucumbers and tomatoes.  Watching the first vegetables appear and grow and slowly ripen is wonderful.  I especially like to grow pumpkins and sunflowers.  I don’t have anything growing this year, which makes me sad.  I’ll be buying them when I see them at stores and farm stands in the fall.

We live in the midst of forest and pasture land.  I haven’t lived in a city since college, although I lived on the outskirts of one after college.  I can hear the birds and my metal and bamboo wind chimes as I type.  At this time of year the only time I’m likely to hear a vehicle is if it’s coming up our driveway.   I can see as many stars as I want to when I go outside at night.   As well as bats.  I love the bats.  I have deer and wild turkeys around my yard.  They ate my last garden.  (Fence problems.)  I talked to the dog about his job after that.

There’s a snapshot of my life besides cancer, the lighter side of it.  It’s not all fear and misery, this is just where I let that out.

Why Two Blogs?

For me these days it’s three if you count face book.  I gave in and joined them when someone from school invited me.  I keep things shallow there.   The main two are this one, and the one that has existed for family as long as I’ve known what a blog is.  We moved across the country away from family, and then had a child, so I worked on putting out information that the grandparents could see on the internet.  It’s read by them and a couple of cousins and aunts, plus a few local folks all pretty sporadically.  I think my mother is the only one who checks it daily.  Sometimes I don’t post for a month mind you, but still she checks.

This blog is for me to talk about cancer,  first and foremost.   Not my farm, my pets, what I’m cooking or how the plants are doing.  Those things may also appear, but I don’t set out to focus on them.  I focus of feeling frightened because my leg doesn’t work.  I focus on my anger at life with cancer — well, not so much on my anger, maybe that’s a post still to come.    I don’t write about that for family because they don’t get it.  My sister-in-law, who reads the other blog occasionally lives with, or is surviving, or is currently in remission from lung cancer, she’d probably get it.  The rest of them, my dad announced I was cured the first time I was in remission.  At the same time as announcing my mother’s chronic illness would be life long and there to stay.  I shook my head and cried.

The other blog does get the occasional mention of cancer, as well as of fibromyalgia, although they are both likely to be veiled under “chronic illness” as anything else.    I didn’t mention the gamma knife radio surgery there at all, although there’s a link to it in the side bar, password protected.  No one who didn’t already have the password has ever asked for it.  No one who originally read the other blog has been given the link to this one.  And I don’t rush around giving out that link either.

I’ve had other blogs that are separate from the family blog in the past.  I often feel better having a place to express myself that is not obvious to folks I’m immediately related to.  One went defunct when the person who owned the server ran in to hard times — I still own the page, I think I even have access to it again, but there was about a year when I didn’t, and now it’s been three or so.

I guess it’s compartmentalizatiion.  It’s working for me.   No one here says “oh you’re handling this so well” or “you have such a hard life”, or any of those other greatly helpful and well meant things that I’ve heard.  That makes this a safer place to whine and complane and be frightened, to talk frankly about things that are bothering me.  I try to put in positive things too, or at least not to only whine and complain.  There is more to my life.  I just have to remember to post it  here.

Now I’ve Fallen

So the rented wheel chair doesn’t fit through the doorway of the last room before our downstairs bathroom. I can wheel up to the door, then use the walker to get to and into the bathroom. Not too bad.

I got back to the doorway and was at the point of turning myself and the walker around so I could sit in the wheelchair when my foot snagged on a dust mote. And as I stood there working on how to move my hip to get my foot to move, I got dizzy.

I’m almost never dizzy. If it hadn’t been for the foot or the dizzy I think I would have been ok but together was to much. I warned Logan I was having a problem — she says I told her I was going to need her help. Then I fell over and ended up leaning on the corner of the stereo cabinet. Logan and I agreed later that I was graceful about it. I told her I wasn’t hurt and to get Papa but tell him it wasn’t an emergency.

So we just had to get me up. Sounds like a plan. But we just hauled me up two nights ago, and my fibromyalgia flare kicked in, so everything we tried hurt me a hell of a lot.

John says we tried things for half an hour or so before we gave up. We tried calling one nearby friend, who wasn’t home. Then we broke down and called 911.

They sent out three beefy guys who discussed things with John, rolled me on to a nylon oval with handles and lifted it. Once my hips were at hip height instead oh floor height I put my arms around John’s neck and my feet down and pivoted to sit in the walker.

And said thank you and goodbye. Time to work on my thank you note skills too.

I’ve left out the screaming and crying I did on the floor. It’s a given. We canceled the dog’s appt and the vets office thinks it’s because the dog fell despite what John told them. (like he couldn’t pick up the 80 lb dog after lifting me! I know, I know. I’m not married to most people, I happened to marry Superman)

We’re all shaken up. I need this to stabilize. I need a little time off. And I can see I need to make consessions to dignaty to make life easier. Blah

Sleep? Nah

I’d like to be sleeping. The dogs shoved out through the screen door at 1:30, knocking over the grate that’s supposed to keep them from doing that. John came to see if I wanted to go to the toilet then. I’ve been worried about walking without the brace on my foot and can’t put it on myself. Except I was really groggy and not coordinated and opted not to go.

So I spent the next two hours waking up thinking that I should have gone / needed to / didn’t have help to walk, and so on. At 3:30 I decided just to go on my own. And I walked pretty well until the last couple steps when I had to find a way to shove my right foot into a position where it couldn’t roll.

So much fo my independence.

So I called for John, quietly, trying to avoid an emergency adrenalin wake up. He suggested we put the brace and my shoes on to get back to bed. Made sense — I hadn’t thought of it.

So now I’m back to bed. I hope John’s back to sleep. After this I’ll write some more in another place, see if my phone will give me current news, and if I still can’t sleep start reading blogs from the phone. Insomnea from frustration. This is what my cancer treatment has done. The net result of what cancerhas done.

Still voting for scartissue

I had physical therapy today — PT intake, etc.  I like the therapist.  She does not like my plastic boot — and has ideas about what it should be, although whether insurance will pay for #2 so soon after #1 is  debatable.

She says, however taht this isn’t just “foot drop” but right leg er the word she said sounded like Paralysis without the “l” — but paralysis fits pretty well.  It’s progressing above my knee, which is why I’m loosing stability there.

I checked in with the MD, she checked in with the MD.  The MD called me back herself and said she couldn’t reach the radiation oncologist or the neurologist and wondered if ordering an MRI asap would make any difference.  I said I’d thought about that one too, but I’m due to go out of town monday nigth (rotten timing!) and I continue to be voting for scar tissue, only that it’s scar tissue that’s not done forming.

My rational, the tumor in that area shrank a lot from one MRI to the next, which it can only do if it has tried to grow.  (I don’t fully understand this, but it’s what the doctor says and John the scientist understands it, so I accept it.)  I believe that  that area of my brain also tried to grow — ie  refresh itself, replace cells, etc.  And discovered that the radiation they’d used back at the gamma knife surgery time had caused a problem there the same as for the tumor.  Wa La, scar tissue forms.  My brain fusses and fumes and gets annoyed, and there I am — Annoyed Brain Syndrome stopping me from walking — oops sorry that’s my own shorthand

So my theory is that the scar tissue isn’t done forming.  Because I like that one better than the theory that there’s a new tumor developing in the same area that was too small to see at the last MRI but is developing fast enough to screw things up this badly.  Part of that is that the scar tissue flare showed at the MRI, while no new tumors did, and it was a high res MRI.

Waiting for the next MRI to find out more sucks.  Not melting down and panicking sucks.  Having to travel to FL and pack up my (deceased) mother in law’s house in the miserable heat and humidity for two weeks, away from home, sucks.  I’m frightened by a lot of this.  But mostly I’m doing my best to ignore it and go with the scar tissue theory, because I’m done with cancer for now.  Sometimes it’s easier to say that then others.

I have a rented wheel chair, which helps.   I don’t want to have to use a wheel chair all the time.  But I really don’t want to fall.  The idea of falling   scares me a lot.

On top of everything else, our geriatric dog has been doing worse and worse.  He has good days, but they are mixed.  He’s taking several medications, and they all help some, but not fully, and the time seems to have come to just let him go.  Especially since we’ll be out of town for two weeks and he’s unpredictabley doubally incontantant, although less so with medications.  And his back legs slide out from under him — but so do mine.  I made an appointment to have him euthanised tomorrow, but I keep wondering if it’s really the right thing.  I think so.  I think his quality of life isn’t so good — he spends more time putting his food beside his bowl rather than sucking it down like a vacuume cleaner.  I’ve never taken a dog still moving under his own power to be euthanised though, they’ve all be at an obvious too sick point — kidney failure, cancer, broken back from a car.  This one’s hard.

I didn’t fall

I still ended up stuck on the bathroom floor while we figured out what to do.

Haveing gotten a shower with my nice new hand-me-down shower chair (what a life saver!) the next trick is how to get me out. And how we did it last time is never quite clear. Not using the muscles in my right leg leave it getting progressively weaker, so I can’t just swing it over our high tub wall as I once did. Someone lifts the bad leg out for me and puts it on a step in the appropriate place so we can shift my weight on to it from the good leg and John can help me step out of the tub. Except this time that just didn’t work.

In what ended up feeling like about twelve steps John, Logan and I went from me standing in the tub to sitting on the bathroom floor. John had to lift me to get my good leg out because I could not manuver. I didn’t end up with any scrapes from the tile edges, or at least none showing last night, but I wouldn’t have been surprised if I did. Tub door tracks and glass tile weren’t made for this.

Once I was actually out and couldn’t fall we all caught our breaths and I had water and OJ and we started figuring how to get me off the floor.

I should say, John is a big strong guy. And its a damn good thing he is. I mean strong as in he lifts heavy weights for fun because carrying 100 lbs of feed or 150 lbs of beans across the farm wasn’t enough for him. So the past six months he’s gotten into serious weight lifting — proper technique etc. Ak of which he used hauling my (steroid assisted) fat butt up off the floor to a standing position, so we could pivot me to sit in the walker. At that point, even with the brace on my foot, my knee had decided not to play well with others and I didn’t trust any of my joints to stay in the places I expected.

After all that I walked, holding on to John, and Logan moved the walker. Then I sat. When I tried to stand again to walk to the table, my right knee buckled. I was holding John to stand up with so I just (just) ended up down on one knee holding on to John. He hauled me up to standing and Logan switched the chair for the wheeled walker and I was wheeled to the next room so we could eat.

Logan and I are sleeping downstairs tonight. I’m supposed to wake her to go get papa so I can go to the toilet at some point. The dog and I have been discussing that point for about an hour now. He’d like to go out and I’m not jumping up to let him. I hate the lack of independance, but there’s no way I’m going to try to stand up on my own right now. I wore out too many muscles.

I’m worried this is all too much for an eight year old, even one as tough as mine has been. Logan says she’s almost nine.

I’m expecting physical, occupational therapies and home health care to help with this stuff. The set up folks called Monday or Tuesday and said the rest would be in touch in a few days. It’s not their rush. Not their butt on the bathroom floor.

Today thursday is a marathon MD appt day. And i’ll look at renting a wheelchair cause I’m not up to so much walking today. Insurance is debating with the Dr over whether I need one. After last night, some days, evidently I do.

I’d like it known that I object.

Plastic Boot

I got my AFO boot.  It  stops my foot from trying to turn itself over which is wonderful, since I turned my ankle three times in three days before getting it, despite wearing a lace up brace to stabilize it as much as I could.  It took two hours for the tech/specialist/whatever-she-was to fit it to me, and she still didn’t believe that it rubbed on the bottom of my foot where I felt it, but she added some padding anyway.  The relief of not having my ankle twist is worth it.

I have a picture of what the boot looks like, but I can’t figure out how to get wordpress to let me put it here this time.  I’ll add it later if I can work it out.

The reason for all this.  Well, the doctors still aren’t saying.  The “tumor board” discussed me this week.  My GP says that means they don’t know what’s up.  It could be scar tissue.  It could be tumor the can’t see yet.  Oh joy.  My vote is scar tissue.  It makes sense to me.  Especially since the last MRI was high res.  But they’ll do another one in mid July and check for changes.

This mobility thing

I’m doing ok getting around with a walker, and I understand better what happened to cause the need for it, but it’s all damn inconvenient.

The cancer started it.

The same place in my brain that the tumors set off swelling in last summer, got hit by the radiation on its way to killing one of the tumors.  It wasn’t the focus of the radiation, it was just somewhere that got passed through.  And then that same place has been hit by more swelling off and on as the tumor in question died.  At some point this spring my brain decided it was time to repair and regrow and discovered that there was all this poor beat up area, and started putting in some nice scar tissue to fix it.

Boom there goes my leg from the knee down right off the map.

I haven’t seen the radiation oncologist to confirm this.  This is based on talking to my own pet scientist at home (what use is being married to a scientist if you don’t make use of him?) and what the neurologist mentioned that there could be scar tissue.  I see the radiation oncologist at the end of July.  Between her schedule and mine that was the soonest available, and y’know it’s not like I’m going somewhere with this.  If it resolves itself first great, but I’m thinking more in terms of years at this point, and that seeing her in six weeks isn’t a problem.  She’s not going to pry open my head and give me a definitive yes or no for whether it’s scartissue or something else.  If she’s going to look at me and say “you have encephalitis” then I’ll say that someone else should have caught that one already, but I’m not expecting that.

So I’m looking at long term changes.  Sutff I’d never have thought of in with more obvious things.

I can’t get up easily from a lot of our furnature — I can’t even un recline the recliner because it takes strong pressure from both legs, and it sits deep and low.

I can’t get up easily from the computer chair — it is low (nice adjustable once,   but not any more) and it rolls away when I try to stand.  Oops!

Our couch and love seat have been too hard for a long time but they’re now also completely inaccessible due to the clutter in our house.  Clutter is on the list to tackle for a while.

Things that just happen, like the kitchen stool got moved to the middle of the room, mean I can be trapped because I can’t negotiate the walker around them well enough to reach to move them.  I feel very unsteady doing bending over things, so moving anything low on the floor is enough to just stop me when I’m tired.

I don’t even try to open or close the windows.  I can’t get to them at all with the walker, and there’s uneven flooring because of the fireplace hearth around them.

I can still do things like the dishes.  They’re easier if I set up the kitchen stool to sit on.  A second stool to prop my right foot on, since the steps on the kitchen stool are in a bad place and my foot falls off, and then lean to the side to put things in to the drainer.  If something falls to the floor it’s gone.  Our kitchen was built for us, tall long armed people.  Not for sitting movement impaired people.

I can iron my shirt for the day (I love cotton, except for that part).  With the stool is more comfortable because I don’t feel like I’m so wobbly.  And it goes a lot faster if someone else sets the iron up for me.

A lot of this would probably smooth out with some help from an OT person.  I see my GP Thursday to ask her to put in the orders for both physical and occupational therapy.  I need to learn how to move my foot for just things like getting dressed, because unless I get a trained monkey, shoving my foot in to my jeans every day at the moment takes orienting it with my hands, or someone else doing it.   There are times the trained moneky would be more helpful than the 8 year old too, although I can’t really blame the 8 year old.

Life’s been stressful.

I’ve got to find out what is required in this state for driving a car with hand controls.  I’ll start with with the GP for that too.  My car appears to be worth about $3300  by the bluebook on line.  What I’d like is a vaguely newer minivan with a sliding door on the drivers side so I could easily toss the walker behind that seat (I can hear the complaints now “but that’s my seat!”  *sigh*) and have it right there rather than having to hold on to the car and work my way around to the hatch back or trunk.  From riding with the O So Many friends who are transporting me, it’s easier to step up in to a vehicle than down.  I haven’t tried getting in and out on the driver’s side of a vehicle yet.  Hyundai van’s from a couple years ago don’t look bad, but I haven’t found any for sale yet.  Not like I’m going to walk out and buy one tomorrow anyway.

Do I sound like I’m whining?  I wrote a long “this is what’s going one” post on my blog for family, and got back a nice supportive “you’re doing well with this” and a “I’m sorry lifes so hard for you” response.  I wasn’t looking for ‘life’s so hard’.  I was trying to let people know what was up, nice and openly.  I’m keeping lots of my big pity rounds to myself.

This week, sometime, I should get an orthotic thing that will go under my foot and up my leg and stop my toe from being able to drop.  Trying to google it for a picture it isn’t coming up under the name I thought it had.  It looks like “foot drop splint” is the best one (duh, makes sense).  Mine is custom, with cool print on the brace itself (I didn’t see clear as an option actually, it would have made sense.  I have the universe.)  It will stabilize my ankle too, I hope. I hope, I hope.  If not, I’ll add duct tape.  :-)

8th Grade

Today the 8th grade at my daughters Waldorf school graduates. They’ve had a hard run of it changing teachers several times when the Waldorf ideal is one teacher from first through eighth. I don’t actually know ant of these students by name.

It’s the last class like that until the one starting next year. I’m planning to watch graduations through the class of 2017.

My daughter’s will be 2015.

And that’s not even high school. But if previous classes are any example these kids can be more ready to go out into the world than high school grads. Maybe some college grads.

It’s another piece of why we go to this struggling little school.

I’m going to cry today watching kids I hardly know. Par for the course I guess.

Oops, I was wrong.  I do know two of the girls now that I’m looking at them.   My mistake.  :-)