Does how you live influence how you die?

My "Crazy Cancer Club" is getting smaller.  It was a small club to start with, really just four of us.  Amy died in December after a 14 or so month fight with a relatively rare, very aggressive form of cancer.  Now, another member is making the transition, after a three year battle with ovarian cancer.  If I were to vocalize my gratitude for today, it would probably be "I'm grateful that I had breast cancer, given the other options out there."  Yep, that would be it, I think.  Breast cancer is not a walk in the park; it frequently causes death; it's also not as bad as many other forms of cancer.

Yet, the times I've visited this particular friend as she's been in hospice the last few weeks, over in the 18 months I've known her, I've learned a lot from S.  While the vast majority of us don't get to choose how we die, we do have the opportunity to lay the groundwork way before the inevitable event.  This is probably the biggest lesson I've learned from S. 

No matter what we've talked about, even with the inevitable conversations centered on the side effects of the drugs that we take to combat side effects (OK, I'll just be blunt here: when cancer endurers get together, we frequently talk about poop, too much, too little, too soft, too hard; it's a never ending battle) or if we talked about other indignities, S always, always, always remained upbeat.  Even when I visited her in the ER one night when her port was infected, before I could ask her how she was doing or what the medical plan was, she was asking me about me.  Did I manage to get my kid started on his homework?  Yes, two hours earlier I'd mentioned that one of my kids had procrastinated on his weekend homework and I'd have to be getting home to monitor that.  S had bacteria in her port, spreading through her body, making her ill, and she wondered if my son had started his study guide!  I don't think S had even met this particular child.  She doesn't have children of her own, yet her first thought was of my child. 

Today, I found out that S had 47 visitors yesterday!  I'm not sure I can remember the names of 47 people, let alone get 47 people to leave their warm homes on a gray day in late February when a winter storm is being expected.  Forty-seven friends and family members, though, trooped out, in dribs and drabs, to show their love for S.  They had no way of knowing if she was having a good enough day to even see them, yet they went.

I've now met two of S's siblings, sisters, and a high school age niece.  Even in these trying times, they are able to smile, laugh, and be supportive, not just of each other and S, but of others as well.

Many of us fear dying.  And why wouldn't we.  It's something we haven't done before, and unknown experiences are frightening.  Many of us claim to know what happens after death, but I don't think any single one of us can say for sure what the mechanism of "after death" actually entails.  Rightly so, then, dying is something we can justifiably look at with less than enthusiasm.  Even more than dying, though, I think many of us fear dying alone.  Hospitals and nursing homes are full of people who are in the process of doing just that.  Many times, we say things to the effect of, "It's sad he/she is alone, but he/she made that bed and now has to lie in it, sad as that might be."

In essence, we all do die alone.  It's a solitary endeavor.  No one can experience it for us.  The most that can be done is to help us alleviate discomfort and show us love.  The transitioning can be assisted, but ultimately, we transition by ourselves.  Yet, I can't imagine that no matter how we approach this transition it can't be made better by having others involved for support.

Throughout her life, S has made great connections to her family and community.  She's kind, caring, generous, and supportive of others.  My guess is that they way she has lived her life, for how many years she's been living it, she's been a good person. Oh, I'm sure she hasn't been perfect.  In fact, I've heard her say a few snarky things.  I'm sure that she and her siblings fought as children.  She's probably done some not nice things.  Every one has and does.  Yet, I'm also sure that S is leaving the world having made it a better place than how she found it.

There's no denying that personality and lots of other variables play a huge role in all of this conjecture.  I'd by no means want to be misunderstood:  we shouldn't be nice or good for selfish reasons.  However, I really do think that we can learn a lot by knowing people at the end of their lives.  Good begets good, some times.  Luck and circumstance certainly play a role, but S is not dying alone in large part because she's lived a good life.  We all are better off for having known her.  People who haven't had the opportunity to know her are better off for her having spent time on earth simply because others are better people.  Her nieces and nephews have that much more goodness within them because of the love she's showed them.  Her siblings now have the opportunity to share some of her goodness to others, whether they know it or not.

As humans, unless we are true hermits, we influence those around us.  The world is either a better or worse place because of our actions and inactions, whether large or small.  We all do make a difference.

In the case of S and her current transition, what goes around comes around.

And that's what I've learned from S.

Go in light.  Your light shall perpetually shine here.

Wrestling with Demons

I've not written much here lately, not because I I'm intentionally ignoring this blog, but because I'm wrestling with some demons, survivor guilt, and feeling overwhelmed by life.

It's not fair to burden others with this, but I'm going to blather on about it for awhile now.

Right before Christmas, one of the members of my Crazy Cancer club died, leaving behind a husband and three young children.  Shortly after Christmas, a friend who already suffers from a serious and life threatening illness was also diagnosed with a rare and aggressive type of cancer.  A third member of my Crazy Cancer Club had some bad reactions to chemo, ended up hospitalized, and has since quit treatment and called in  hospice.  And the husband of one of my oldest friends is, tomorrow, being biopsied to determine if the thing in his brain, a thing which is affecting his ability to walk and tend to himself, is indeed cancer and what kind.  Regardless of whether his tumor is benign or cancerous, it's nasty, deep, and going to have some significant impact. 

My friend recently said, "I now know what you mean by it's always with you.  I open my eyes in the morning and within seconds think 'this is my reality.'"  And yes, in general, I'm in darn good health.  The pain of neuropathy is mostly gone.  I occasionally, maybe once or twice an evening,  I'll get a shooting neuropathy pain, but it's short lived and they don't take my breath away like they used to.  I've got some lack of sensation in my feet and the very tips of my fingers.  I don't notice the stuff in my fingers, but the stuff in my feet is a constant reminder of what I am now.  I have to constantly, multiple times daily, work on range of motion in my arms.  I move like an old lady when it comes to shoulder rotation.  Again, this doesn't affect my life, per se, but it's a constant reminder.  The numbness of my skin and muscles in my left arm is annoying.  It's just another constant reminder.

It's just always here. 

So, a friend and I went to visit our other friend who just entered hospice.  Hospice means you are actively dying.  Sooner rather than later.  Yes, once we are born, we are all fated to die.  Yet, when you are in hospice, you are acknowledging that death is nearby.  She looks like she's dying.  She's lost a lot of weight.  Her skin is gray.  She's up, around, and bright eyed, but she's a little more distant.  And I imagine she'll get more and more distant.  Whereas I wake up and think about ME, while she's in the most me-centric stage of life (outside of infancy and early childhood), she wanted to know about my kids, my husband, my job, my health.

I don't know if I'd be able to be that way.  I'm too selfish, too ego-centric.

I can't even keep a blog entry focused on others.  In my survivor's guilt, I'm still ego-centric.

An unfamiliar position...

So, here's a sad and unfamiliar situation for me:

Some friends and I have formed a little support group. Some call it "Strong Women" some (OK, me) call it "Crazy Cancer Club."

One of our members is dying.

She is leaving behind a husband and children, young children.

As we do so darn well here in the Midwest USA (or maybe it's a Great Lakes thing), the community is doing its best to tend to the needs of the family. Meals are being brought in. Cleaning is taken care of. Christmas is being tended to. Teachers have been met with.

It's so incredibly sad. Heartbreakingly so.

During Cancer Club meetings, we've talked about some really intimate stuff. It's one time we can laugh about the indignities we've experienced. Some of them can be quite amusing. Some, out right funny--much of that has to do with chemo brain; some, in a warped kind of way--much of that has to do with chemo brain, or did I already say that? It's one time we can talk about how precious it is to be able to poop when you need to. We can laugh about losing hair. We can express frustration about fearing that every twinge is a recurrence. It's one time where "it is what it is" can really be what it is because we all have gone through it or may confront it. Some of us have "curable" cancers. Some might be on chemo off and on for life. But this is the first time one of us has died.

And I just don't know what to do.

My love language, apparently, is food.

Another member of the club and I took dinner to the family last week. And I could not stop making food. I made a frozen meal for some later date. I made two soups. I made Magic Mineral Broth. I could have kept going.

I understand my friend, who isn't seeing people these days, enjoyed the Magic Mineral Broth.

I'm not a close friend. We've shared intimate moments. But we've never otherwise socialized.

I understand my friend is in a lot of pain.

I suppose I fear that I soon will end up similarly.

But meanwhile, I feel very awkward. At a loss for words.

I know this journey, this transition, is one that is very individual and one that we all must undertake.

Yet, I wish I knew what I could do to make this easier for my friend and her family. I feel so helpless.

And so sad.

So very, very sad.

How do YOU want to die?

Of course, we've all had this conversation at one time or another. You know the one, "Would rather know the hour of your death or has it come as a surprise? Slow and lingering with time to make your peace or fast? Fire or ice?"

But that isn't what I mean today when I ask, "How do you want to die?"

I've been thinking a lot about Elizabeth Edwards this week. She knew years ago that her breast cancer was most likely going to be the cause of her death. Of course, she could have been hit by a bus or gotten pneumonia or been killed in a plane crash. However, when you are told that your cancer is "treatable but not curable" you can probably bank on it eventually killing you. At least when it is breast cancer that has metastasized to your bones and then your liver. Treatments--chemo and radiation--can only be used when one is strong enough to tolerate them. Since the treatments themselves are ravaging....well, some people endure a long time. Others not so long.


Yet, how do you want to die? Elizabeth Edwards seems to have done it the same way she lived, with grace and dignity. At least publically, at least as far as the press is presenting it. She's reported to have posted to Facebook a farewell message of sorts:

“I have been sustained throughout my life by three saving graces – my family, my
friends, and a faith in the power of resilience and hope. These graces have
carried me through difficult times and they have brought more joy to the good
times than I ever could have imagined. The days of our lives, for all of us, are
numbered. We know that.

It isn’t possible to put into words the love and
gratitude I feel to everyone who has and continues to support and inspire me
every day. To you I simply say: you know. With love, Elizabeth."

Ignoring stories of marital discord and harpy-ish behavior, because this entry isn't really about Elizabeth Edwards at all, those are pretty graceful words. It's even rumored she didn't write them Or that they were written a while ago and she was just waiting for the right moment to post them.

Whatever.

What would you post to Facebook just days before your death? Huh?

I'd like to think that I'd have the where with all to be as graceful. The reality, though, is that I'd be more likely to post something like "fuckedy fuck fuck fuck...this is so fucking unfair. Why me? Fuck, I'm pissed. Why isn't this happening to someone who deserves it?"

I imagine most of us die in the way we live, so my death will not be nearly as graceful. My life certainly isn't graceful.

If we die the way we live, I just might live forever because I'm the ultimate procrastinator. Here it is, 4:50 p.m. and I haven't gotten very far with dinner plans yet today.

I supposed this all means I need to make some changes in my daily life if I want to approach death with a right mind and right intentions.

I need to dwell on this some more. I don't want to dwell on death, but let's face it, dying is the only certainty in life. Maybe we should all think about it a little more.

How do YOU want to die?

Even more frightening than cancer...

...is the treatment.

Tomorrow, I go for my first radiation appointment. I'll have tiny tattoos made that will help the doctors line up the radiation.

Then they will make a body mold so that I lie in the same position for ever treatment.

Then they will run some simulations.

When they are convinced that they are ready to zap me just enough, but not too much, in just the right places and as minimally as possible in the wrong places--which could take anywhere from 1-3 days and practice runs--I'll start getting zapped daily.

The scary thing about radiation is that if they screw up, it will kill me.

And the thing is, there is no way to know if they are screwing up.

Until it is too late.