Final post. Land the plane

For the first time since August when I started this blog I am finding it increasingly difficult to write.  I realize from this exercise that I do actually like writing, but I now feel rather disingenuous perhaps?

The story I tell is 100% true.  There are no exaggerations about what took place, the timeline or the feelings.  However, I feel like I have to land the plane, and wrap this up.  Perhaps I will write more and keep it for myself and the original intended audience, my kids…so Will and I can share with them and remind them of what we all went through and accomplished together.  One day the four of us can read it and think “wow that was so crazy” or, “I didn’t remember that…”.

However, I feel I have to get this blog caught up, like right now, to the present day. I feel indulgent.  That is not a way I want to feel.  I feel guilty and I feel like my story sends the wrong message all of a sudden.  Never my intent of course, but perhaps reality just slapped a lot of people a bit too hard the second day of this new year. Perhaps it is because a wonderful man whom I can honestly say was universally loved or admired by anyone who knew him, spent ten minutes with me at a friends birthday party this summer, encouraging me and telling me how great my attitude was, and how he just thought that having this positive attitude was the best, and knew it would get me through this difficult time in my life and I would come out the other end stronger than when I started.

The horrible news, is as he was telling me this, he had a truly life threatening cancer growing inside him.  He just didn’t know it yet.  Once he found out a few weeks ago, he survived just under one month.

So how can I write about cancer.  About being a survivor.  I have survived my cancer but I don’t believe I earn the right to be called a cancer survivor.  I didn’t have to fight the way others do.  I didn’t suffer as most cancer patients do.  Mine, well, just sounded bad.

I don’t want my story to diminish anyone who has real cancer and is fighting for their life.  I don’t want to diminish the too many people we all know and loved so dearly who lost their battle to cancer.

I have real cancer, and will for the rest of my life.  There is no cure right now.  But I am not fighting to survive.  I was fighting to delay regrowth.  Hugely different ballgame.  I get a shot, a decent shot, at old age.

I feel perhaps that I have survivors guilt.  That despite how scary and awful brain cancer is, that mine sounds so much worse than what I have endured.  Brain cancer can be awful and we have two college friends now dead from this disease, and again the sweet dad in our daughter Sally’s class…all under the age of 50.  Brain cancer is horribly deadly. But I got lucky.  I got the break that if you don’t get, you have to fight for your life and depending on the type of cancer, there is often no chance of coming out the other side of treatment stronger than you were before.

It’s just not fair.

I named my blog Why Not Me…because I believe cancer touches everyone, doesn’t play favorites, doesn’t act out of vengeance to punish someone.  It just happens.

But now, instead of saying Why Not Me,  I am saying Why Me?

Why did I get so damn lucky.  I am no better, smarter, kinder, than any of the people I know who died too young. I am no more needed by my children and spouse or friends than any other.

Why me?  Why didn’t I go through the physical hell so many of my friends and family have, and survived.  I didn’t go through hell of almost intolerable pain from chemo and nausea that keeps you bedridden for weeks at a time.

I don’t mean to minimize what my family and I endured.  I have a different type of hell.  I worry about a recurrence.  I have to do multiple MRI’s each year for the rest of my life.  I have to see how my body takes it as I come off very intense anti-seizure drugs…and that titrating down will take almost a year.  I am not saying it has been easy and I don’t want to trivialize the suffering my illness inflicted on my family, or the worry it induced to you my family and friends.

I guess I am just restating what I have said from the start.  I got lucky.  And when you hear stories of someone who dies quickly after diagnosis, it reframes your narrative.  I got ridiculously lucky!

But I will never know why.  No one does.  However, I know I am grateful.  I thank God and my dad in heaven each evening, that I got to be one of the lucky ones.

It is January 3, 2019.  It is a new year.  No, I am not finished with my treatment.  I still have one more chemo round to go.  They typically want 12 rounds, but for various reasons (many of which are positive) they are stopping me at 6.  I am not complaining.

I made it through my Proton Radiation treatments and adore each and every person that works there.  Somehow someway I will make promoting and helping this amazing Center, as a sign of my gratitude for HOW they do what they do…so kind, so gracious.

I got to Cannon Beach, which was my focus and goal from day one, as a motivator to get this scary radiation part over with.  Thanks to our generous friends who invited us to stay at their beautiful, peaceful beach house…and the kids, my sister and some of her family…we all took long walks in the morning along the water on perfectly pressed sand.  We flew kites, we laughed…and at all times I was covered by a bandana, scarf or hat as I was bald about 3.5 inches wide and about 5 inches long across the center of my head.  This was to be permanent.

However, a small miracle, one that does not impact my prognosis whatsoever, but psychologically is hugely impactful to my personal well being, my confidence, the simplicity of moving on in life and having this be a part of my past, happened.

My hair grew back.  It continues to grow back as I type. Not just a little, but all of it.  All except the two W shaped scars across my skull from the craniotomy.  Some people tattoo something important that has happened in their life to remember it by.  They tattoo the name of someone they love or what they believe in.  Perhaps it’s a symbol of who they would like to be. Perhaps it is something they are proud of.

I don’t have a tattoo.  I have a scar.  Mine is a scar with  2 W’s….what it stands for or symbolizes is still unclear.  I have a few good candidates however.

U of W – the medical center that took such great care of me?

Will- my husband  my rock.  That one for sure

Ward, my maiden name?

Win, Winning and Won are also W’s.   I know I have experienced 2 of these 3 W’s.  And I believe that the last W is coming my way as well.

Wow.