The journey has ended

Our beautiful, wise and very brave daughter left this world at 1:15 this morning. It was not an easy exit. But it is a beautiful summer solstice morning - a good day to start a new journey. We hope she finds peace and light and we can only be grateful for an end to pain.

I'll write more later -

Eileen's Mum

I am writing this for Eileen as she is no longer able to communicate. She is in hospice now - has been for the last three weeks. She has not been able to post again and the last one was difficult for her - obviously the loss of privacy and dignity is uppermost in her mind right now. However, she is no longer able to use the lift so is confined completely to her bed. She is sleeping much of the time and eats very little. This is a terrible process and her insurance company dragged it's feet in providing the necessary equipment until she was beyond any benefit it could have provided. However, her care givers here are unfailingly kind and try their best to keep her as comfortable as possible.

The hospice Eileen is in is lovely and she has big sunny room with views of the gardens and birds feeding their chicks in a birdhouse outside her window. She has had many visitors coming to give her hugs and to tell her how much she has meant in their lives. She says to send her love and gratitude to all of you who have given so much of your support over these past years - it has done so much to make her last journey bearable. If you leave comments I will try to bring them to her.

 And thank you so much from me too for being there for her.


Eileen's Mum

Cancer and Dignity

This part is difficult to talk about, but I did promise honesty.  If you want to leave yourself with a more dignified or romantic idea of me in your mind, you probably don't want to read this bit.

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 I have come very suddenly to a condition that is not only painful, but excruciatingly humiliating - of the two, the humiliating lack of dignity and privacy is much more difficult for me to deal with than the pain.  The people here are lovely and kind, but that gives me no relief, no privacy, no dignity.  To know that things are only going to get worse instead of better is horrible.  

They don't talk about this sort of thing in movies.  They don't warn you about this sort of thing in the doctors' offices, either.  You expect pain, you sort of know that you are going to end up wearing adult diapers - you know you are  going to end up being wiped up a bit on occasion, that you might end up wetting your bed.  I cried the first time I stood in the middle of the kitchen, unable to stop the little flood of fluid that poured and spread across the floor.  

Cancer does not care about your dignity.  

When you have cancer, you end up having to take all sorts of medications, many of which are constipating.  So you have to take laxatives and/or stimulants to make sure that you have at least one bowel movement a day, or things get very uncomfortable very quickly.  Keeping track of that sort of thing is a pain, but it's better than the alternative...

When you have the kind of cancer that causes paralyzation and numbness, things get worse.  You can't feel what is happening, and you don't have the muscle power to get what is down there out on your own.  You have to take medicines that soften things as much as possible - both oral meds and the sort that require other people to physically interfere.  And then when you sit on the commode, people have to physically interfere again.

There are all sorts of concerns in this situation.  First of all, of course this is a very intimate and humiliating sort of process.  And you don't get a choice about who performs this service for you - you take who you can get, which for a woman means that sometimes this involves strange men. It is difficult to be brought to a state of infantile dependence on other people for such an intimate process.

Cancer does not care about your privacy.

In order to use the commode, especially if you are paralyzed and cannot get to it on your own, you have to be hoisted by a lift, which has to be managed by at least two people.  The process is physically painful, as they end up having to use slings and straps to lift you up and set you down, which presses your limbs all together tightly as you are hoisted through the air, and your clothes get bunched up under you and have to be pulled out from around you in order to get them out of the way when you are on the pot.  This pulling about is painful and humiliating in and of itself, but not as bad as the next part, which requires these relative strangers to physically assist in either insertion or abstraction of material - and yes, finally I have reached the point of Too Much Information and I will pull a merciful curtain on that particular issue, relying on your imagination to fill in the details.  

But the fact is that at that point you often end up having to wait for minutes or many hours for meds to do their job.  There's no nice schedule to let you know when urgency is going to hit.  So first of all, you are dependent on your helpers to show up with a lift, which then takes time and a lot of fussing around to get you up and on to the commode, and it might be too late to prevent a mess by that time.  And then the process itself, and the cleaning up, might take a great deal of time, might need to be repeated a short time later, etc.  Which means that all visitors need to be shoo'd out of the room, and of course they know what is going on, and it's very inconvenient for them and for you.  Not to mention humiliating and painful.  

Cancer does not care about your pain.

Pain and Kindness

I found this one -

My adventures in hospital have been a mixed bag, in that I've had quite a bit of pain in my leg and hip and sitzbone - and unexplained swelling, which has been difficult to resolve - and we had that trouble with the Nurse of Doom.

On the other hand, the support staff - the social workers, nurses and nurses' aides, palliative care people, physical therapist and occupational therapists, the people from the hospice program - have been absolutely fantastic.  During a time that has been chaotic, rushed, confusing, full of unknowns and unknowables, full of demands for attention and fears of loss... we've been surrounded by people who obviously have a real Calling.  They have been incredibly gentle and kind, consistently helpful in the face of our confusion and dismay and fear, and unfailingly patient with our anger and sadness.

To top things off, they did their best to mitigate the damage done by the Nurse of Doom; instead of leaving us at the brink of a holiday weekend with nowhere to go, they went out of their way to help us with making arrangements for the next stage of this journey; it's such a comfort to know that when I leave this hospital, I will actually have a place to go.

If you have the need to go to a hospital in the Twin Cities, and you have a serious illness, Abbott Northwestern is definitely a good and caring place to be.  I am told by my nurses that it is also a good place to work.

Pain and Not

My adventures in hospital have been a mixed bag, in that I've had quite a bit of pain in my leg and hip and sitzbone, and unfortunately the standard treatments don't seem to be working for yours truly, and an important treatment has been misplaced and unfortunately now will probably be both important and unavailable in the future - and then there's the unexplained swelling in my leg/foot, which has been difficult to resolve.  And of course we had that trouble with the Nurse of Doom.

You'd think that would mean that we'd be unhappy with the hospital, or the hospital staff.  But you would be wrong.  The support staff - the social workers, nurses and nurses' aides, palliative care people, physical therapists and occupational therapists, the people from the hospice program - have been absolutely fantastic.

During a time that has been chaotic, rushed, confusing, full of unknowns and unknowables, full of demands for attention and fears of loss... we've been surrounded by people who obviously have a real Calling.  They have been incredibly gentle and kind, consistently helpful in the face of our confusion and dismay and fear, and unfailingly patient with our anger and sadness.  At all times they have been mindful of my desire to be treated with dignity - not an easy thing with someone who is entirely dependent on others to do not only bathing, but to assist with such intimate issues as cleaning after using the toilet.

To top things off, they did their best to mitigate the damage done by the Nurse of Doom; instead of leaving us at the brink of a holiday weekend with nowhere to go, they went out of their way to help us with making arrangements for the next stage of this journey; it's such a comfort to know that when I leave this hospital, I will actually have a place to go.

If you have the need to go to a hospital in the Twin Cities, and you have a serious illness, Abbott Northwestern is definitely a good and caring place to be.  I am told by my nurses that it is also a good place to work.  One of the social workers told me that if she was sick, she would crawl 30 miles over broken glass to get here - I think that probably is what would be considered a positive sign.  I'm not big on glass in my knees, but I understand what she meant.

Oops, they are here to get me and whisk me off to the next station on our journey.  Will report when able - wish me luck!

What Turns Out Not To Be Next

Today we had a visit with someone we've never met before, a nurse practitioner who was theoretically standing in for Dr. Bouncy.  Unfortunately she left my mother in tears and a degree of maternal distress that was very difficult to see.  I have to admit that she also left me in a degree of internal distress that was somewhat difficult to experience, as well...

For one thing, she made it clear that Dr. B either misinformed us or had changed his mind without consulting us in any way; the option for clearing my meningeal lining of cancer cells has been vetoed, will-we or nil-we, as has any other treatment options than kicking us unceremoniously out of the hospital as soon as I no longer have a condition that they are legally required to treat.  In other words, as soon as my current course of radiation is through on Friday, we're out of here unless I literally cannot move - if, for instance, I have a heart attack or my organs fail or I am completely incontinent due to radiation damage to my intestines (not an entirely unlikely scenario).

This, in spite of the fact that it will be a holiday weekend, with the attending short staffs and unavailable rooms that usually accompany said weekends.  That is, according to the Nurse Practitioner of Doom, our problem and not theirs.  We should have had our ducks in a row and our papers all in order, in spite of the sudden and unexpected onset of my crisis.  After all, we've had at least a week to adjust...

Speaking of adjustments.  Today's radiation treatment, intended to be a two-parter with one treatment in the morning and one in the afternoon, turned out to be a single.  One of the radiation machines went on the fritz.  Again.  Which was possibly a blessing, as the a.m. treatment was once again very painful, and unfortunately the condition of my leg and foot and back has degraded since then.  I am having intestinal issues already, my leg and hip and foot are more swollen and painful than they have been in a long time, and we are now slated for two treatments tomorrow, instead of today.  My team is asking me to make decisions about pain meds, but I have no idea what was working on Tuesday that is so clearly not working today.

So.  Tomorrow is another day.  Let's hope maybe somewhat better - good news on the housing front would be nice, for instance, and less pain and swelling in the leg and hip and back would be better still.

We'll see......

What's Next

This is the beginning of the end.

I promised I'd be honest on the blog, so I'm getting down to some areas that might count as Too Much Information for some readers. What posts I can manage to write from here on in will sometimes be dealing with physical information that may be more graphic than sensitive people might be comfortable reading.  Some posts may be more emotionally difficult to read, for those who have either befriended me over the course of this journey, or those who tend to empathize deeply.  I'm not sure how much I'll have the energy or time to write, or whether I'll be able to focus enough to make sense at all times, but I will do my best.  

There are some signs that I may have cancer cells in the fluid of my meningeal lining.  We will need a lumbar puncture to find out, and then if it is positive for cancer cells and if I want to treat it, they would put chemo in the meningeal lining - theoretically not a lot of side effects, and if there is cancer there, that could be causing some of the muscle weakness and numbness, and the chemo could help maintain what is left of function there.  Or I may have subtle tumors in my spinal column that aren't yet big enough to really show up on the scans yet, and given my sensitivity to subtle changes in my body, I could be reacting to them earlier than most people would.  More on that in a bit.

What does show are a couple things.  One is that the hip tumor has gotten a lot bigger in the last month, and the other tumors are either stable or growing.  Another is that there are small but important tumors blocking the nerve sheaths in the bottom of my spinal column - from my lower back to the bottom of the tailbone.  Basically L5 is an issue.  This is what controls the legs from the knee down in the front, and most of the back of the legs, plus the 'saddle' area - all the area that is covered by a bikini bottom - so it would affect the bowel and urinary continence stuff.  All of which has become an issue for me.  Doesn't affect the upper stuff that I am also having issues with (thus the 'subtle tumors'/meningeal lining questions), but at the moment these are less of a concern than the continence and being unable to walk/stand.

So.  Unfortunately the hip tumors/lymphedema/DVT issues masked the cause of the foot drop on the left side, because once the paralysis has been well established, it cannot be reversed.  However, radiation can (if the patient is lucky) reverse the paralysis if caught in the first few days.  So they are hoping that radiation to that area of the spine will allow me to keep enough strength on the right side that I will be able to stay continent for at least a while, and be able to get to a commode/bathroom on my own or at least with reasonably minimal assistance.

It is unfortunate that we did not have this information prior to making the decision re Gamma Knife - certainly I feel that some of my fatigue and lack of focus, and perhaps even my balance and weakness issues, comes from the Gamma Knife treatment, and if Dr. Bouncy is correct with my timeline, I don't think the prognosis would be significantly different had I not had it.  And even if it had, in terms of that little bottom tumor swelling up and causing massive organ failure, it might have ended up being a quicker and kinder death than that with which I am now faced.  

There are, of course, issues with the radiation.  One is side effects.  With radiation there is always the fatigue factor, which varies from patient to patient.  I didn't have too much fatigue with my first round of radiation (to my hips), but I was taking Low Dose Naltrexone at the time, which gave me a lot better pain tolerance and much more energy than I have now. I'm already having a lot of fatigue - and thus also less strength/more weakness - just from the cancer, so adding to this is a big consideration.  This would be my second round of radiation, so my guess is that to some degree these things tend to be cumulative, even if there isn't a lot of overlap between the radiation to the hip and radiation to the spine.  Since this is the lower spine, there may be some overlap in my case.  More complicating factors, in my experience, equal more side effects.

Another consideration is that with the lower spine, there is lower intestine exposed to radiation, and the lower intestine is an area very prone to radiation damage - so there could be a continence issue for a week or so after the 5-course/5-day radiation program they are suggesting.  Bedpans cut right into the hip tumor, making them a messy and a painful option... and 'adult diapers' would be lymphadema-inducing and not great for the skin, along with not being the most pleasant and dignified option in the world.  

If we did the lumbar puncture/spinal chemo option, it would have to be after the radiation was done, so between them they would take up a couple weeks of treatment.  They would, however, count as palliative rather than curative treatments, so they can be done while counting as a hospice patient - which in our case means access to more equipment and services being made available by insurance.  Whether I get the lumbar puncture will probably in part be determined by what sort of improvement I do or do not see after the radiation treatments.

All of this is very complicated as far as trade-offs, because according to Dr. B, I've probably got somewhere between 4 and 8 weeks left on me.  And of course, although we can't know for sure exactly what is going to happen, some portion of those weeks will be pretty much spent comatose/sleeping, and some portion will be spent actively suffering and dying.  Once I'm out of the hospital, most of those weeks will need to be spent in a hospice or nursing facility, due to the more extensive nursing/caretaking needs that this paralysis and weakness are causing.  

I would prefer a hospice facility if at all possible, due to them generally having more experience with the palliative and emotional needs of younger patients with cancer-caused symptoms and death - which are often significantly different than the needs of those dying with the symptoms connected to old age.  

It would have been helpful to get more info from Dr. Bouncy, which we were told we were going to get this afternoon, but then the world sort of exploded in clouds of doctors and therapists all at the same time, all demanding priority time and none getting to give me anything near a full accounting, and Dr. B somehow never showed up for our consultation... and the first radiation dose is happening early in the morning, since waiting any longer to start treatment would make the damage more likely to be irreversible.  

Unfortunately, the radiation machine turns out to be excruciatingly painful.  I had about 10 minutes on it today while they targeted it, and ended up crying from the pain of my leg and hip/sitzbone tumor... the table has NO padding, and they have to twist my legs up in what turns out to be a joint-and-tumor torturing position that I am afraid I will not be able to endure for the 30-minute treatment they are promising me each day.  I haven't cried for any of the other chemo or radiation treatments, even the chemical burn or the mis-screwed head/faceplate.  This was really serious pain.  They are going to try to see if they can find some sort of pain killers that will help, but we aren't too sure what will work...

So I have decided to try the radiation treatment, at least for one dose, in hopes that keeping some limited mobility and strength on my right side will improve my quality of life for the following few weeks.  Assuming that we can actually do it, given the overlap issue with the previous radiation treatments.  Hopefully I will have more time to talk to Dr. B and the radiation specialist between the first and the next doses, and also a better idea of whether the pain factor can be limited a bit better somehow.  

Again, these issues are in part due to the swiftness with which this end stage often hits those with metastatic breast cancer.  It is axiomatic that it is more common than not that people start hospice care preparations too late to be able to take advantage of what hospice care has to offer - and certainly I would consider myself to count among this population.  It is very difficult to make life-and-death decisions and preparations in the midst of a fast-moving crisis, especially one in which there are a number of variables and unknowns, and a fair number of people whose lives will be affected by the outcome.  

I will report more tomorrow, I hope.  I have dozed off several times during the writing of this post, and it is late, and I have an ordeal to look forward to in not too many hours.  

Wish me luck.

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.