Published in "Survivor", The Post-Journal, October 30, 2010

My Story

I don’t know or remember where I heard this in reference to being a “survivor” but the gist was that you don’t know you’ve survived cancer until you die from something else.  A pretty morbid thought, isn’t it?  And sad, too.  Hearing this took away something I valued a lot-hope, and reinforced the Fear.  Fear has become my shadow and is akin to someone you don’t particularly like, but have to put up with.  Fear is there every minute of the day; greets me first thing in the morning and haunts my dreams.  Fear whispers, “It might come back, you know”. Fear is something that every single person that has had any type of cancer knows intimately.

I wasn’t afraid in the beginning, which always seemed odd to me.  I was determined to win the battle and “it” was not going to stand a chance.  Looking back, I don’t know where I found the strength to go through what I did with such hope and well, attitude.  None of it seemed to weaken me, or my resolve to survive.  I do know now, there were many, many times that I faked this good, positive attitude for someone else’s sake.  There were times of emotional confusion for me that I couldn’t even explain to myself.  The only one that truly saw the heartbreak, the sadness and the grief for what I had lost was my significant other, Kevin.  When my hair started to fall out, he cried for me.  But, bald or not, I was his and he stood by me through it all. 

I went through the chemotherapy easily, if you can say anything about chemo is ”easy”.  I never got sick from it and felt fairly normal most of the time.  Until I looked in the mirror of course.  I remember wondering, “Is this stuff even working?” because I ,like all of us, heard the horror stories about chemotherapy.  Well, it was working and in August 2008 I had a bilateral mastectomy.

I remember that day so well.  I was taken down to the surgical holding area and left there alone for about two hours.  My family had no idea where I was or what was going on.  I am glad that I had that time.  I remember I crossed my arms and held each breast in my hands.  I felt their weight, their warmth and I said good-by.  Memories of that first time my mom made me wear a bra were there…the first time they were touched …hugging my son to them…all there.  I said good-by to my breasts.

Before the reconstruction, I would often “feel” them-the weight of them.  It was a strange feeling, which I think was very similar to the phantom pain that amputees feel.  Each time it happened, I felt sad for a few minutes, remembering what was. I still feel a sense of loss.  My “new” ones are nice.  Or, rather will be when all the surgeries are done.  But, they aren’t the same.  They are cute and perky and always will be unless insurance companies are willing to pay to have reconstructed breasts “aged”.  I laugh a bit, thinking about being my grandmother’s age (95) and having nice firm tata’s. 

Cancer took much away from me-friends, my self-esteem, and at times, it took my life because “it” dominated every minute of the day if I let it.  I faltered at times, but I tried to be strong for myself.  I believed.  I believed in myself, in the power of love and mostly, I believed that I was strong enough to win.  I still believe that.

So, I truly AM a survivor! 

Sadness, but not loneliness

I've had some time lately to reflect on all that has happened in the last few years.  I know that many say it all happens for a reason, and they're probably right.  What the reason is, most of the time, we don't know.  Would we want to? 

I don't think I appreciated my mom and dad enough, until the cancer came and they were there for me 100%. I always knew they would be there, but I guess none of us realize just how much family will sacrifice for you until it happens.

If I had not gotten cancer, would I have the true friends I do now? Would my best friends include Kevin's step-children? Some of Chalan's friends became our friends as well.  The changes that happened in my life, and Kevin's too, were a direct result of our illnesses.  Believe me, I am not grateful for our health problems, nor that of my parents, but I am grateful for the friends, family and the good changes that came into our lives because of them.  Though life seems so difficult for so many of us at times, if we look for the magic, it's there.

I miss Kevin terribly, each and every moment of the day but I am not lonely.  This cabin was so much ours, that I don't think I'll ever feel completely alone here.  There's too much of him, of him and me here.  I walk outside and see the three big rocks we rolled out of the woods-him laughing at me falling on my face when it finally took off downhill.  I look at the "trinkets" I have all over the porch and remember how he'd sigh, roll his eyes a bit and say "whatever makes you happy, sweetie pie".  The fairies, candles, witchballs, dragonfly ladies, the hickory woman and such, just fit here, and always have.  Just like we did, together.

I still have all of his things around me and probably will for quite some time.  I need the comfort of his essense right now and that's okay.  It's part of the grieving process.  I won't make this cabin a shrine to him, he would get hightly pissed off if I did that!  We had plans of things to do inside and outside, and I'll do my best to do them as I can.  Even though over time, the cabin will become different, it will essentially always be the same in many ways. It will always be mine and Kevin's home that we created together.  Nothing can change that.  As Bob Dylan's song The Ballad of Frankie Lee and Judas Priest says, “It’s not a house . . . it’s a home”. 

Am I doing okay?  I think so.  But, we all know our perception of our behavior and what the world sees are often two different things.  I don't get lonely, like I said, and there are a lot of things that I want to do.  I have to admit, some days, I don't "do" anything.  I don't have to. If that is considered depression, I believe I differ in opinion.  I feel that, on days like that, I am subconsciously making a plan for the future, thinking, reasoning, etc.  I am not one to be put down for long.

Some days I feel very sad and almost disoriented.  You know, the something (or someone) is missing feeling?  Today is a sad day.  I'd like to just hide away in the woods away from the world, but I know I can't, nor is it healthy to do that.  So, I will leave these enchanted woods (as I always called them) and go out into the world as we know it.  But I'll be back, and be welcomed home.

I'll be just fine, I know that.

Remembering II

My best friend, lover and biggest champion died last week. Oh, we knew it was going to happen and that was a kind of gift in many ways, as odd as that seems to sound.

We had the time to talk, to plan, to cry. I remember Kevin telling me many times “I need you to stay close to me.” I did. Never a really demonstrative person, he became one. I often wondered if he was comforting me or himself, but it didn’t matter. The hugs, the kisses…they were so bittersweet and precious. He held me so tight as I cried a few months ago, my heart breaking...knowing what was coming. 

Kevin became somewhat romantic knowing the end of our life together was coming. He made sure he told me how much he loved me, how he respected me, was proud of me…oh so many things in the last months. One of his favorite songs that he had me play over and over again was by Lionel Richie, “Stuck On You” and listening to the words many times, I think he was trying to tell me how lucky he felt to have me in his life. Can you understand how my heart rejoiced and broke at the same time? I have attached a link here. Listen and you’ll understand.

Stuck On You

Kevin and I had a relationship based on respect, love and friendship. Oh, we had our times when we fought, just like anyone else. I was usually devastated when he was mad at me and would apologize first (even when I knew I was right). I just couldn’t take it when he was disappointed in me or upset with me. He always said that disappointing the people you supposedly care about, and that care about you, is the worse thing you can do to someone. He did always admit when he was wrong (which wasn’t often damn the stubborn Swede) and admitted mistakes that he made.

I’m sure there are many people in our lives that were disappointed and are upset that Kevin wouldn’t change to suit us. I have to admit, I am one. I know I am not alone…his son, his mom, friends…all of us. We wanted him to stay alive-he wanted his own life, his one way. One thing sticks with me, however. Kevin always journeyed on the “road less traveled” for most of his life. Why did we ever think he would trudge down some well worn path at the orders of someone else? His path was predestined from the beginning. And didn’t that non-compliancy attitude, that cockiness, make him exactly who he was? Would any of us have wanted to change him, the essence of what made Kevin…Kevin? I don’t think so.

Kevin could analyze people almost immediately and just simply know their nature. I can’t remember a time that he was wrong. It took years at times, but ultimately his perception of the person was right. Don’t think that wasn’t irritating at times…

All in all, Kevin was a wonderful person. He was kind, very giving, generous and yes, tough, opinionated, tempermental, brutally honest, and a real pain in the butt at times. We loved him because of that. Earning a smile, kudos or praise from Kevin Williamson was a big feather in anyone’s hat because he expected the absolute best from all of us.

Kevin always felt he had been born in the wrong century and I believe that he did live in another time when men were men, so to speak. He had great admiration for the mountain man, the first cowboys and the renegade. Being somewhat of an outlaw himself, he understood the need to go your own way, to break your own trail and live life to it’s fullest embracing and enjoying the adventure along the way.

Did he have regrets? A few. Don’t we all? He regretted hurting Sarah. He regretted friends he lost and the life he wasn’t going to have. He regretted the things we would never do together. The things he would never be able to do with Chalan.  He regretted the words he never said to his mother, his son, my son, his stepchildren and his friends.

And leaving us…yes, he regretted that the most.

He knew years ago, unconsciously that he would not live to be an old man. He always knew that. How, I don’t know. But he did.

A friend of mine told me that we are put on this earth for a preordained amount of time with certain tasks to fulfill before our time is up. Did he fulfill those tasks?

I think so. He taught so many of us to be stronger than we thought we could ever be, to push ourselves just a bit farther and to never ever give up yourself to someone else. “Don’t lose what makes you uniquely you” he used to tell me. He taught us to look within, to find the essence of ourselves and make it brighter so that we could shine.

He died listening to his favorites: Gordon Lightfoot ,Nat King Cole, Elton John, Cat Stevens, Bob Dylan and Chalan…always Chalan.. He taught Chalan to play guitar initially but always said Chalan took it to a higher level, one he himself didn’t achieve or need to. Once again, the “old man’s” wise words pushed, prodded and pissed many of us off enough to become what he always knew we could be and to be strong enough to go on without him and be who he knew we always were.

I had made him the promise that he would die in his cabin in the woods and he did. He could see the sky, hear the birds and hear the songs of his world, which wrapped around him and took him home.

I’m mighty glad I stayed.

Remembering

This is a photo of Doc and Kevin taken at Chautauqua Gorge in April 2000.  I have always loved this photo because it is Kevin at his best and you can see the love these two had for each other.  Doc was so proud carrying his own backpack, too.

I do have to say something though, hoping that whomever reads this takes note and thinks before they say or do this.  It isn't fair and is very sad when it happens.  It has happened to my dad and now to Kevin, too.

A friend of ours wife came to see Kevin a week ago or so and made the comment that she was upset with her husband because he didn't tell her how bad Kevin was.  Okay, that's understandable.  But, what she said next is not.  She said she wished she hadn't seen him because she wanted to remember him when he was well.

Excuse me!  Your memory suddenly  goes defunct all of a sudden because you see someone ill?  What this women in essence really is saying is that it hurts HER too much to see Kevin sick.  I don't really care about HER feelings.  By staying away from friends that are sick because YOU don't want to feel bad has got to be the most selfish, self serving thing I have ever heard or seen.  Isn't part of being a friend to be there even during the tough times?  I have heard the phrase :"fair weather friends" and it seems that many of Kevin's friends, and mine too, were or are that. 

Well people, the storms are raging so go home and cocoon in your little bubble of comfort.  We, on the other hand are facing the thunder and lightning and yes...raging back!

One day at a time I guess

Well, Kevin and I finally have some help!  His doctor made arrangements for Hospice to come in and help us.  It was very sad and hard to accept this.  In fact, on Monday when the woman was supposed to come, I cancelled it because I felt sick to my stomach.  I realize now that I was simply trying to postpone having to deal with it.  I usually deal with things head on, but this time I just couldn't.  Lynn Austin was the initial contact and she was very kind and understanding of what I did and the heartbreak I felt.  She told me it was not unusual to do this.  Naturally, me being myself, I felt guilty about it but she comforted me and let me know I was not alone in my reaction. 

I think watching someone you love in pain has to be the hardest thing a person has to do.  My Dad is also going though major life changes and now has had to accept that he is going to lose his other leg.  I am very proud of my Mom and how she is handling this.  And my Dad, too.  I can't imagine coping with that but you do what you have to do to stay alive.  Life will be different, but there will still be life! 

Kevin and I have often discussed quality of life issues.  He, for one, would not be able to make the decisions that my father has had to.  I know that Kevin would choose death over amputation and that is each person's individual choice.  Myself...I'm pretty sure I would fight to live like my dad is.  Plus, he'll have a cool motorized chair to buzz around the neighborhood in!   I know that my father will make the absolute best of what he has been dealt and so will my mom. 

People have often said that I am a strong person.  Well, who do you think I got it from?  My mother and father. 

I am still having difficulties with our decision.  Hospice made arrangements for some items that will help Kevin and to be honest, I did not react well to them yesterday.  For one thing, they showed up without calling and luckily Sandy was here while I was at work.  I know they are things that we will need down the road but it pissed me off.   But, as I tell myself-this isn't about me is it?  So shut up and buck up.

Oh yes, I smack myself around on a regular basis.  I guess I figure it's better I do it than wait for someone else to.   Brilliant theory, I know.