Into The Deep

When you get to this part of life, one of the hard things is feeling like you are going to disappear... as though you are slipping down into deep waters with only a few temporary ripples to mark your place.  And the fact is that life does go on without us.  Kids keep on growing, people keep on working and playing and sorrowing and rejoicing, just as they did before.  

Of course that is a good thing.  I suppose a few of us might not mind too much if everyone else wandered around beating their breasts and shedding ashcloth everywhere, mourning us forever - it takes all sorts.  On the whole, though, I imagine that would make for a pretty dreary neighborhood.

But it's hard not to feel left behind.  And it's hard to feel that you might have been rather superfluous, that you didn't accomplish the things you intended, and you didn't leave something of real meaning to mark your passing through the world.

I can't say that I've resolved these fears and feelings for myself,  or that I have anything of wisdom to impart.  All I can say is that when it all comes down to the end, what we are talking about is trying to find immortality not of the body, but of something more meaningful.  And setting the matter of personal spirituality aside for a moment, I can't help but think that the answer lies somewhere between how people remember us and how we touch those people's lives.

It would be easy, perhaps, to glibly say that of course people remember us fondly, and that should satisfy... but I'm not sure it is enough.  After all, fondness is fairly easy for many of us, and ease tends to rob things of meaning and value.  It's meaning that we're looking for, and that requires something extra.  It requires us to invest enough of ourselves in something or someone that we make a difference - that our touch causes something to happen that wouldn't have happened if we had behaved differently, or if we hadn't been there.

The hard thing is that for many - perhaps most - we don't get to see that change of direction, if it happened at all.  So unless we are the sort of person who gains fame or notoriety by our actions, we are largely unaware of our degree of influence in the world.

I suppose that's another type of faith we have to cultivate, along with whatever religious beliefs we hold dear.  The faith that all the little investments we make in our friends and family, along with the (sometimes accidental) investments that we make in our workplaces and our clubs and our neighborhood schools, that those investments will make some positive difference in the world, and that they will continue to make that difference long after we are gone.

We can only hope... and keep investing for as long as we can.  

Trying To Breathe

Things are looking no better at the moment, so we're trying to find some balance between panic and foolish denial.

Some combination of the cancer and the drugs are certainly not helping.  There are a ton of things that need to be done - gathering of information, organizing, prioritizing, putting information together in a way that makes sense for my husband, etc.  Not to mention the need to gather my thoughts together enough to write something meaningful down for my various loved ones, so that they have some little bit of me when I am gone.

Unfortunately, just the gathering of info and organizing has become impossibly challenging.  I spend hours staring at the same pile of papers, moving them around, trying to force them to make sense enough to deal with them... it's very frustrating, because I know that what took me five hours yesterday (and I still haven't really dealt with them, just sort of tried to figure out what I would do with them later on) would have taken me five minutes last year.

The stresses of having to deal with my needs and his own feelings has left my husband hardly more functional than myself.  His body moves like my focus - just vaguely wandering from one place to another, looking at whatever catches his attention and then putting it down wherever he loses interest. The result being that after hours of fretful activity, either very little gets done or things actually end up worse.

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Well, that was written a few days ago, and then I got distracted (are you surprised?), and then we lost internet ability until now.

We lost it because by necessity I moved to my parents' house, and in order to make room for me they had to unplug their office stuff, including the router.  But today a very nice man who belongs to this Club of ours that nobody wants to be in (people who either are dying of cancer or who have lost a beloved family member to cancer) came in and set everything up for us.  So I'll get a couple more posts out to you, I hope.  But probably not many.

In a few short days I've lost the use of one foot completely, it's a useless thing that flops or folds over agonizingly when I try to drag it along with me.  I am halfway on the way to losing the other, and feel the beginnings of loss in the hands.  First things go numb, then painful pins and needles along with numb - and at that point they are gone, useless.  Every day I am feeling things slipping away, right as it happens.

I promised I'd be honest, so here goes.  That is not the only stuff that is going numb, and losing muscle power.  Front and back, the abdominal areas are starting to go bad, too.  And the stuff that is connected to the abdominal areas.  At the current rate of deterioration, I won't have many days (maybe tomorrow?) before things are going to get very unpleasant, and very difficult.

Well, things are already unpleasant and difficult, but everything is relative.  There's unpleasant and difficult.  And then there's unbearable.

I'm at the tipping point here.  Every day I can literally feel my functions slip away.  My poor right leg will not hold me up very much longer, I think.  A day or two, maybe?  If I don't end up at the hospital this weekend, I will probably be going there or to a hospice residence fairly soon after that.  I don't know if I'll be lucky enough to go fairly quickly after that, or if (it seems more likely) I will have a very ugly period in which I am somewhere between being in very awful pain and being drugged up to the point of a coma (if they can manage it, given how badly I react to just about every drug ever made).

The cruel thing is that what is so obviously the only humane thing to do for our suffering beloved cats and dogs is a mercy that we will not allow our human loved ones.  When our kitty started really suffering, we were able to hold her and pet her and let her know that she was loved, she was able to be comfortable and comforted, and then she just went to sleep... just a few short peaceful seconds, and she was gone.  She didn't have to get to a point where she was in terrible pain, she didn't suffer the indignities of losing her basic physical and brain functions.  She got to be herself, she got to say goodbye, she got to feel our love.

It's a terrible thing that I am facing, and a terrible thing that my loved ones have to face.  

But we have no choice.  It's the one area where I'm afraid we will never agree with those who feel that their personal religious beliefs should be prescribed into law/government for all.  In this case, we have a division of church and state except that for some reason other people's religious beliefs are in charge of my life, and my own feelings and beliefs don't matter one bit.  We have fits over whether our kids see Santa wandering down school hallways, but it's okay for other people to decide the manner of my passing from this world into the next... I am forced to suffer terribly, whether it's right or not, whether it's MY life or not.  Scott and my parents will have to pay for it, both emotionally and financially, even though none of us want it - hospice care in a facility costs upwards of $9,000 per month AFTER insurance pays their bit.  If you are lucky enough to have insurance - or to be eligible for Medicare, which I am not.  Unfortunately I am not alone there, and some people don't have insurance or kind relatives to help out - imagine someone in my position, but they are homeless.  Not a nice thought... and not a nice thing to experience.

So I am lucky in one way - but still, it's hard to look at my present or my future and feel that way.

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Life and Death

When we drove here, I knew that it was the last time I was going to really feel fresh air on my face, the last time I was going to see the city skyline against the blue sky, the last time I was going to see the purple and white iris exploding with riotous exuberance in their garden plots.  I knew it was the last lovely thing I would share with my beloved.  It was beautiful, and it was bitter.

This morning I woke up to the sound of birdsong.  I lay still for a few minutes, my eyes closed, and for that few minutes I felt... like me.  Normal.  As though I could get up and take a walk in the morning's tender light.  As though I was going to live to see my son and baby granddaughter grow up, and celebrate holidays with my beautiful and loving family, and share romantic getaways with my husband, and make colorful soft textiles with my once-clever hands, and laugh with my friends.  It was beautiful, and it was bitter.

Cancer Is A Stupid Hobby

It's been a really bad week.

The scary thing is that we don't know why, since the Gamma Knife treatment seems to be shrinking the brain tumors we worked on a couple weeks ago, and the PET/CT scans look as though the body tumors are relatively stable or somewhat less active (although there are a couple more in the liver and lungs, they don't seem to be affecting me much per se).  They were able to get to the little tumor in the back of my head on Wednesday, and the neuro guy says that the tumors are small and there is little-to-no swelling in the brain.

So why the vertigo, the nausea, the weakness, the falling, the misery of a foot that not only won't hold me up or obey my commands, but is pulling the muscles of my foot and leg in such a way that they are cramped up, frozen, and 'asleep' all the time?

I can't get up to our house any more - at the moment, that's the big issue.  I am going to need to move to my folks' house in order to go to doctor appointments - and in order to do that, I need to move my hospital bed and various sick-person's accoutrements to their house.  And they don't have a real guest room, so we're forced to stick me in their living room - a terrible amount of trouble and loss of privacy and fearful amount of work for them and for me.

Will the trouble itself force me into hospice care?  I don't feel anywhere ready for that yet, in spite of the pain and debilitation... but there are all sorts of questions that accompany these decisions.  If I get better for a while, would I be able to move back home for a bit?  Would moving me back and forth be more bother for my folks than all the work  and sacrifice that caring for me entails, or less?  Are my folks both physically and emotionally strong enough to deal with my needs? For how long? Am I emotionally strong enough to deal with all the various changes that my condition and my living quarters are forcing on us? 

Will I essentially be forced to quit treatment and abandon all hope of a bit of extra time, all because of a relatively short but unfortunately steep set of stairs between me and my doctors?  At the moment, that's how I'm feeling.  I'm being put down by a set of steps...

Quiet Day

Both visual and mental focus extremely fuzzy today, and I fell asleep last night before taking my last dose of pain meds, so it's going to be a challenging day comfort-wise.

I've decided that I am going to have a Quiet Day, in hopes that it will minimize the pain and aggravation.  And in hopes that it will leave me in better shape to face tomorrow.

So today is dedicated to knitting and listening to historical documentaries on Netflix Streaming.  I'm going to avoid the phone, and doctors, and paper forms, and any other useful employments.

I know that there are tons of things that need to be decided and done, and that I already do not have the time and/or ability to get them all done before I shuffle off this mortal coil.  I know that taking 'time off' will mean getting even fewer of these things done.  I feel badly that this will inconvenience my loved ones at some point in the future - I feel badly that this will inconvenience ME in the not-too-distant future.  But the inconvenience is inevitable, so I might as well just accept that as a given.  What I can hope for is that giving myself a little island of calm today will give me a bit more energy to deal with all the Stuff I'll have to deal with tomorrow.

So that's the hope.  Wish me luck.  And a lack of phone calls. And success in my next expedition to the bathroom and kitchen (ironically my two big projects for the day involve fetching fluid to put into me so that I then have to do what is necessary to get fluid out of me).

Things Are Different...

Hmm... Blogger is looking very different, and now is not a good time for things to get all different on me. Why do things get more complicated right when the brain is getting beyond figuring out new things?

Frankly, the brain is getting beyond figuring out old things.

Here is what has been happening:

The smallest of the brain tumors turned out to be further down and back in my brain than they thought, and so they were not able to treat it with the Gamma Knife treatment along with the other two tumors.  At the time, they spoke of trying other treatments in May... either a different targeted treatment or whole brain radiation.  Or of course the choice of letting the tumor grow untreated - a quick and unpleasant death to follow.  The plan was to do another brain scan mid-May, which might give us a better idea of what options would be available.

In the meantime, we found out that the steroids that keep brain swelling down also interfere with the effectiveness of the chemo treatment that I am taking.  A PET/CT scan last week showed a mixed pattern of tumor growth and regression.  I also have been suffering from a great deal of pain in the foot and hip, some of which is due to side effects from the chemo, and some of which is due to lymphedema in the hip and leg and foot (which is worsened by the steroids).  Unfortunately because of the huge tumor in my hip, it turns out that I have very few options in treating the lymphedema, which is interfering with both comfort and mobility. So we decided to minimize the steroid as much as possible, and to skip doses of chemo on occasion in order to give my foot and hip a bit of recovery time, while still hopefully getting some slowing of tumor growth from a lower dose of the chemo.

Unfortunately, this past Saturday I woke up with severe dizziness, nausea, vertigo, vomiting - and when I tried to get to the bathroom, I fell and found that I could not walk.

Subsequently, I have been off the chemo for a week and on three days of intensive steroid treatment.  Things have improved somewhat, but I am now using a walker and still suffering from dizziness and nausea, and the combination of chemo and steroid I am now on probably pretty much cancel each other out in terms of effectiveness.  We are definitely in Experimentation Territory at this point.  Dr. Bouncy and I are neither of us happy with the situation, but there are no clear roadmaps as to what would be the best tactics to use, so we are just guessing and compromising and hoping for the best.

In the meantime, we are still not sure what caused the sudden problems described above.  It could be a reaction of brain tissue to the Gamma Knife treatment.  It could be quick growth of the untreated tumor.  It could be a combination of the two.  Or perhaps something else.

The neurologic radiation specialist has (in consultation with another radiologist) decided that our best bet is to treat the smallest tumor via Gamma Knife on the 9th of May.  They will do a scan just before the treatment, which should tell us if part of the trouble is tissue swelling and/or bleeding from the prior treatment, but they feel that the most important thing right now is to try to keep that little tumor from growing any more than is necessary, and that Gamma Knife is our best bet for doing that.

So that is the story at the moment.  Frankly, I feel that so much of this is basically a matter of flying blind and guesswork.  There are so many unknowns, and so many decisions to be made on a dearth of information.

At the same time, we are trying to make a lot of decisions about my living situation and treatments in the near future, also largely to be made on a dearth of information - my quality of life, side effects, treatment effectiveness, insurance and financial situations, all seem to change rapidly and without warning.  None of these decisions are made easier by my brain function and emotional situation being messed up by the various meds and tumors and who knows what else...

So.  I apologize for the lack of focus and clarity in this post.  I hope that things will get a little better with a lowering of steroid dosage, although I cannot make any promises on that front.  I will try to update you as things go along, assuming that I am able to understand anything that is going on, myself!

Pink Ribbons, Inc.

The movie "Pink Ribbons, Inc." may be coming to a theater near you - and if it is, you should go see it.  An excellent description of the movie, the reasons to see it, and a link to a list of places it will be 'coming soon' is available at the wonderful blog "ihatebreastcancer".  Check out the info, and while you are at it, read a few posts while you are there, you'll be glad you did!

Holding Pattern

I'm having a lot of trouble with symptom management - in part because we aren't sure what symptoms are due to the cancer in my body, what are due to side effects of medications, and what are due to the brain tumors.  This makes treating the symptoms somewhat difficult, because different meds use different pathways to treat various issues.

For instance, one sort of steroid works well for brain mets, because it treats cerebral swelling well, while another might do better for chemo-caused inflammation and symptoms.  Unfortunately the steroid I am taking - which treats cerebral swelling - I recently found out decreases the effectiveness of the chemo treatment I am taking.  Since we suspect that at least some of the very worst of the symptoms are caused by the chemo drugs, having to double the dosage in order to get the same effectiveness one would expect from the dosage that is already causing problems... well as you can imagine, it's not optimal.

Another steroid might not have that problem of lowering effectiveness, but would not treat any symptoms that might come from the tumors in my brain (perhaps most especially the one that could not be treated and thus not slowed down, whose low position near the brain stem makes brain swelling a major concern).

As you can imagine, this is causing concern and consternation to all concerned.  I have an appt. with my palliative care specialist tomorrow, and she has consulted with the neurologist and my oncologist, so hopefully we will figure out some course of action... but she tells me that they may not be able to alleviate my symptoms to anyone's satisfaction, and it may all just be an exercise in trying to balance the horribleness in a way that I can sort of grit my teeth and bear it at least part of the time, rather than getting me to a place where I am functional or comfortable.  In other words, I may get to choose which symptoms are most awful (do you want excruciating pain and manageable nausea, or manageable pain but lots of dizziness and vomiting?), but I don't get to choose not to feel awful.

In the meantime, my condition is putting us under a lot of pressure to make decisions about end-of-life care that are difficult to make with the relative dearth of information we have - we don't have a timeline that lets us know what and when my various needs will be, and this causes a lot of practical planning problems.  I am under the pressure to get a lot of things done, but I'm not in a condition that lends itself to doing things that require either physical or mental exercise.

All of this is what takes up my time, most of which is spent in bed.  Well, that and watching television, which is the only recreational activity I'm capable of at this point.

And that is why I haven't had a lot to say in the last week or two.  I'll let you know if I catch a break for a while...

Reporting In... And Out, Apparently

It's evening, and I'm awake enough to type, so here's my report (so far):

The halo thing was more unpleasant than hoped for.  This is partially because I have a bad reaction to one of the local anesthetics used, so they had to do without... and evidently it's a significant omission in terms of pain control.  The first attempt to screw the thing to my head was agonizing, they were literally crushing whole areas of bone that weren't even attached to the areas being screwed.  Eventually they believed that I was not just being a whining crybaby and took the thing off and started over again, after shooting me up with a lot more novocaine.  The second attempt was still painful, but within bearable levels, so that one stayed.

They got me in to treatment a lot earlier than they thought they would, which is good.  The reason they did this is because they couldn't get at one of the tumors, which is bad.  Among other things, they were afraid that if they did the procedure now, it would flood the areas between it and the other two tumors with too much radiation, and damage too much brain tissue.  They hope that giving the rest of the brain a few weeks to recover might minimize the more serious potential side effects.  The other choice would be whole-brain radiation, but I have to say that I'd rather avoid that if at all possible.  I will have to go in for another scan in six weeks, and if the tumor has grown enough that they think they can get at it, they will do so with a different machine and different process, at a different hospital.  I think the other process is less exact, probably more risks... but this is evidently a very badly placed tumor, very low and deep in the brain, so it's not giving us as many options.

The tumors they did treat, the two larger and higher ones, were somewhat complicated, as well.  But they feel they got them, and no other tumors showed up on the scans, which is good.  The next concern is the next 10 days or so, where the short term side effects tend to show up from brain swelling and bleeding, nerve damage, tumor swelling and toxin release, etc.  Pretty much a 'wait and see' deal.

After that the concerns are long-term side effects, which are largely the same as the short term ones but can show up unexpectedly months or even years later (not that I have to worry about that last part).  Oh, and in a decade or two it can cause you to get other cancers in your brain - but of course when the nurse said that, I just laughed...

Just before treatment they gave me a largish dose of steroids to help keep the brain from swelling during/after the radiation.  There was some concern when I threw up immediately after taking the steroids... but it was soon enough that they were a bit reassured that they didn't see any actual pills, so we are hoping that will turn out okay.  The treatment itself was weird feeling and uncomfortable in terms of all the manipulation of the halo and head and shoulders, but once  you are settled in it's pretty quiet and easy.  They put a wet washcloth over my forehead and eyes to help with the nausea, which also meant that I didn't see the halo around my head and face - probably more restful that way.  They played my cd (Thanks, James Taylor, you are very relaxing) and by the time it was over I was ready for the second tumor to be treated, and by the time the cd played again, I was ready to have the halo taken off.

That part wasn't more than uncomfortable, not too bad.  Then they put on a bandage that keeps your skull under pressure for a while - it makes me look like a wounded soldier from Valley Forge, I wanted to know where my fife and drum were hidden - this is to keep your skull from depressurizing too quickly and causing rebound brain swelling, etc.  We'll take this off tomorrow morning, treat the holes where the screws went into my skull with a bit of antibiotic lotion, and try to fend off infection for the next week or so, until the holes close up.

I went home to bed as soon as I got home, with migraine and pain in the pressure bandage around my head (normal, I guess), and depression from the Ativan.  Slept for most of the afternoon, although Scott says that I did talk a bit in an Out Of It sort of way.  Currently have a moderate headache and nausea, but not anything too desperately awful... I'm typing this up and then we're going to watch something light and stupid and then back to bed.

As Scarlett says, "Tomorrow is another day..."

It's Been A Hard Day's Night

... or something like that.  It's been physically and mentally a difficult couple weeks.  The news from various doctors has not been encouraging - pretty much a menu of choices that all involve very unpleasant results and then more unpleasant choices.

I've clearly reached the point in terminal cancer that is pretty much all the terminal and not much of the other stuff.  And I can't say that I feel ready for it.  I don't feel ready for the process, I don't feel ready for the ending.  None of this was voluntary, and I'm feeling a bit resentful of being Drafted without my permission.

But here I am, no real choice about the matter, just a sort of vague hope of dragging things out a little bit longer.  And today is a big day in the 'trying to drag things out' process - the Gamma Knife procedure, whose only offered benefit is the possible potential to slow the rapid march of the brain tumors down a bit... an attempt, as the neurologic surgeon puts it, 'to bring the battle back to the body'.  A battle that my body clearly is losing relatively quickly at this point, but that might buy me a few extra weeks or months with my loved ones.

So.

Wish me luck with the battle - that the procedure itself won't be as unpleasant as one fears in the wee small hours of the night, that the side effects will be minimal, that it will work and buy me that bit of extra time, and maybe a smidge more functionality and less pain for a while.  Every little bit counts at this point.

I need the luck...