Holidays

Holidays are just not what they used to be.  I used to get keyed up, ready, happy, decorate, stressed but doing it.  now I don't actually even care.  I am just looking forward to feeling like things are routine, which will never happen, if the past years are any example.

A friend of Eric's is in the hospital with a failing liver.  Eric's aunt died of cirrhosis of the liver.  She drank herself to death.  There are too many of us who think that life is just handed to us, that we don't need to treat it like it is a gift.  I remember in college my friend - great of me, I don't really remember her name.  She was from Taiwan, I couldn't really understand her much of the time, and she seemed to really like me.  In perfect style, I didn't understand why she liked me so much ...

One night she said she wanted to make me dinner, so she made me this amazing Thai dish, something I never would have had in a restaurant.  She said she had never really cooked before, but whipped up this amazing meal.  Before, I stopped to get a coffee...  she said "why do you do that? you don't need that."  (it was just coffee, for gods sake!)  "treat yourself nice"  she said.  Your body is to be respected, treated well, ....  I take that a bit further now, and though I don't live it like I should - I understand that life is a gift.  life should not be wasted because it can be taken from you at a moments notice.  don't fuck it up. and that is what we do - we think we need things, we hide behind things, we avoid things, when we should be celebrating what we have.

harumpf

Terminal

The aftermath from the annual  Brock Halloween  party wasn't too bad.  a messy house, a broken skull, but all in all it could be worse. 

deserve

Guilt and the issue of 'deserve'

I’m not contributing to society in any meaningful way. I can only hope that my commitment to live a better, more thoughtful lifestyle, to exhibit an excessive amount of kindness in everything I do, and to set a good example for my granddaughter will help me get over this feeling that I really don’t deserve such abundant blessings.

The feelings of guilt are so silly, honestly.  Not that we don't all have them -- I felt guilty that I am still here, Melissa is not.  I feel guilty that I am not doing more for her daughter in her absence.  Melissa felt guilty that she was leaving her daughter.  She also felt those feelings of guilt when she was doing well, and thinking that things were going her way.  I watch carefully the things I say because I am not dealing personally with the struggles of a diagnosis, and feel guilty that I am healthy when so many others are facing so much more.

I think what I saw through this terrible time with Melissa is that the very LAST thing she should feel was guilt.  Everyone here "deserves" as much as they can get to help get through these times.  There are always things to learn but it is funny that we still feel that there must be some outside reason.  Is there really a reason to be contributing to society?  Isn't what we all really want just simply happiness and comfort?  Until we reach that within ourselves are we really able to give to others?

'deserve' eludes to things being out of our control... Is that really true?    It is like I should be in trouble if I do bad, praised for good.  we get what we deserve...  right?  not really.  it seems pretty random to me.

I took Maddy to a Mommy / daughter class last night.  it is about time she learned about ovaries, I guess.  She is definitely curious.  She has always loved babies...  She says she can't wait to have a family.

Sometimes I think that is the biggest complement -- is her wanting a family reflective of our family?  have we done a good job?

In the same moment, one of the questions that I asked her from the suggested list had something to do with "what scares you about growing up".  "I don't want to grow up, Mommy.  I am afraid to grow up."  Why, honey?  what scares you?  Growing up means dealing with death and being afraid.  Shit.  Life is a wonderful thing, honey.  It offers you a wide open canvas, where you can paint your life however you want.  There are opportunities and so much to offer.  At ten years old you shouldn't be worrying about death. 

Maddy spent a lot of time at the hospital, not as much as she wanted to - she wanted to be there with us.  She also didn't want to be there.  To be there meant she had to realize that her number 2 mom was leaving us.  She wrote that Melissa's skin was cool and soft, kind of clammy.  She wasted away to nothing and didn't wake up even though we were all hanging out in her room for so long.  The time there is a blur.  I went every day.  I couldn't not go.  

The night that Melissa died, we had been there.  We were finally home about 9pmish.  I still have the email that I sent to Jack so I know the time that Matt called.  He just said - We're done.  She's gone.  I get chills when I write that.  I am so sorry Matt.  I am so sorry. Thank you for calling me.  I am so so sorry... I still am.  not any fault kind of sorry - just sorry in a way that makes me sad, I wish our lives never took this turn.  I looked recently at her blog... she had started her own when she was diagnosed.  you can see it here:  http://hopingforsomegrace.blogspot.com/.  Then she was invited to write for the NLCP, and switched to a more formal audience... http://nationallungcancerpartnership.org/melissas_blog/index.php/about/.  Her original blog reminds me of her daily life, of which I was a daily part.  there are memories that flood me when I read a post, that I have put away so far, and just now am reaching back to feel again.  They hurt.  they feel good.  she was here, she was vital and terminally positive.  Now I know that that terminal positivity is another way of being desperately in denial.  

it's fucked. of all the things --- I can usually find some silver lining. not with this one.  nothing is worth it.  

A Summer Day

A summer day

I love the 70’s.  When I was young and growing up in the 70’s, I thought I was pretty cool with my bell bottom pants and my matching outfits.  My favorites were gold and purple.  The knee down was purple on one leg and gold on the other.  The knee up was the opposite.  I wore a mustardy gold colored shirt to match.  My hair was cut like Dorothy Hamil.  Or Toni Tenille.  My glasses were octagons. 

The best picture we have of my proud self in this outfit is of myself and our dog, Daisy.  We are standing in front of the gas pump. (we had our own, sticking out of the ground in front of the biggest cedar tree in the world).  I felt like I was looking pretty good.  It was before my parents decided we needed to kennel the dogs that would run in a pack through the neighborhood.  

The cedar tree later got a plaque, designating it as a historical big tree on the island.  Somehow even with a plaque to protect it, it was later taken down to make room for the bigger and greater houses that needed to have views of the small bay in the distance.  We spent hours playing under that tree.  The cedar fronds reached the ground and it was like the world’s most beautiful tent…  The trunk that stood at least 4 feet in diameter fed a branch that was itself as thick as a tree, that reached directly horizontal for a good 5 feet.  We hung a tire swing there.  And we would climb up and sit on the wide tree branch.  It could rain, it could be hot…  under that tree it was the perfect dry temperature and the ground was all soft needles.  It was better than any tree house.  Higher than that branch the tree split into two more trees.  We would climb and climb, like it was a beanstalk and we were looking for the golden egg. 

Another branch hung down in a perfect slide to the ground.  It ended in a nest of cedar fronds that gentle placed you on the ground.  The branch was worn soft by our butts sliding down and landing safely in that nest.   I never felt scared in the tree – it was a safe zone.  It felt like a big mother who was always there, and protecting us.  The fronds were hands that always surrounded us, providing a shield from anything bad.  I still can feel it - the comfort.  I think I have been working to get there as long as I can remember.  If I could visit the tree I would.  I don’t remember ever feeling as safe or as comforted as in that tree.  It was magic.  It was home. 

The first time we sat and watched this show = Stand up to cancer – you had just been diagnosed, and we all sat at your house on the couch and we cried, and we called and gave money.  I watch it now, and I want to see that there is so much hope.  There are the sad stories, the stories of a struggle, the kids who shine and show us how strong they are and make us all feel very small for being so scared.  But the hope I feel is a sad hope – I lost my hope a few years ago when you died.  The struggle – you didn’t let us feel it like you must have been feeling it.  I am sorry I wasn’t there in the trenches like I should have been…  I learned that my way of trying to follow your lead only left you trying to lead.  You should have been able to not lead at that point.  I know that I needed to be there to do whatever you needed.   But I should have said – I am taking you here.  We are doing this.  Instead I said – what do you want me to do. 

When you put on your pretty skirt and got ready to go back to the hospital, I couldn’t carry you to the car – I thought you were going to die right there.  The vision of you barely able to get down the stairs to the car so I could battle traffic to get you to the hospital.   I know you felt like it was hours …  I could never do enough.. .  I don’t know how to ever feel good about what part I played.  I could have flown you in a private jet to get you there and I will never feel like I did enough. 

Once a year?

It seems like I get around to finding this blog about once a year and thinking I need to recapture my thoughts. It usually comes on the tail of a discussion started somewhere else, where I would like to continue but it doesn't feel appropriate given the audience. I need to make my own audience, then I can wax on however I feel. Though that turns it very one sided, doesn't it?

The conversation I talking about is here: http://cancergrace.org/topic/survivor-storiesmember-status-updates-forum-title/page/2/#post-1245562. I have so much more to say...

 Double Trouble - I wish most people could understand and talk in frank terms as she does. and as many of the GRACE community do.  it is refreshing.  and her discussion:

 Most of us don’t survive, and perhaps if more people understood that they would be more inclined to do something about it. I don’t think we should imply otherwise. I don’t use the term.

I don’t like the idea that I’m “fighting a battle” either. In the end it would imply that I didn’t fight hard enough to win. I think we give all we’ve got, that none of us could work any harder than we do to stay a step ahead of the inevitable. I’m okay with “living with cancer.” Like “living with AIDS.” You don’t ever hear the term “AIDS Survivor.” 

...nails it on the head, I think.  A friend of mine who I was discussing this discussion with suggested the same thing - "living with cancer", as an apt description.

I recently spent a bit of time with a friend of a friend who's daughter has juvenile diabetes.  I find myself just pelting her with questions, because I am so curious and because I want so bad to understand why anyone is dealt a hand of disease in their life.  I then apologized for so many questions and she said: "no - I love it.  most people are afraid to ask".  I would feel the same way.  but most people who aren't dealing with something so similar in their lives are afraid to ask.  It is not easy to know the right questions, and they are fearful they will somehow say the wrong thing.  that leaves those dealing with disease feeling alone and like no one wants to hear or know about the bad.  Only the good.  Like 'Surviving'....


Dr. Weiss also rightly points out that viewing patients as being on borrowed time is not right either.  Survivor is an overused term - but when you strip all of that away, it is a very positive, bright word.  it is full of hope and promise, and the continuation of a life being well lived.  but like many things in our lives, it has been taken for marketing and used to draw people in who are fearful of these unknowns.  But they are the ones that somehow need to understand that (we) can't do it alone.  Meaning funding, or just dealing with any disease.  We need more than just those dealing with disease to help - whether it is funding for a place like GRACE to continue, or it is a bigger animal, like funding for trials, or even bigger - allowing our government to support research and then allow our people to all get the same care by supporting a healthcare system.   Enter the marketing world who sugar coats and draws people in on the goodness of their heart.  Plays on their guilt.  Fundraising is an interesting arena.

In more ways than one, the patient is the battleground - a great analogy... the docs and the cancer are the ones fighting out and trying to win, that patient is just hoping for the positive outcome.  this is from the thread  by jimmieruth,

 But that battle is between the doctor and the cancer. Survivor. Well, hopefully, the doctor survived. The poor patient is just the battle ground. 

Jack mentions hollow marketing efforts, getting back to the overuse of the term 'Survivor", but when you are dealing with a scared general public who have shown themselves to be more comfortable with shiny pretty things than the reality of life and the possibilities of disease and death, how else do you get them involved?  If people would rather watch trainwreck reality tv where the biggest problem is a miscoloring of your fingernails (I clearly don't watch), how can you expect them to give money or want to fund scary things like cancer research or eradicating other diseases?  we dumb it down in the marketing world because we need these people to listen - and the quickest path to those pocketbooks is to make them feel good about their shiny happy words.  but are we just spiraling into more and more see no/hear no evil?  if we don't force people to be smart?
 I agree also that people should use what terms work for them ...  I tend to overthink.  And for me words really hold so much feeling and color.   Dr. West mentions hollow marketing efforts, getting back to the overuse of the term 'Survivor", but when you are dealing with a scared general public who have shown themselves to be more comfortable with shiny pretty things than the reality of life and the possibilities of disease and death, how else do you get them involved?   It is a struggle on many levels.  until it becomes personal, people don't know what to do.

It is refreshing to hear so many discussions on what these terms mean to everyone.  I had many good discussions with Melissa, but not nearly enough.  I wish we could talk now - without the heaviness of her daily attempts at normal (there is   that word again).  I find people tip toe around me a bit sometimes -- still.  for fear that they are bringing up a loss that I would rather not think about.  But I do every day, and being able to talk about it and other stories really makes me feel good, honestly.  not bad.  sometimes sad - but sadness isn't always bad - it reminds us of what we had, and those memories are something I never want to lose