Tuesday, December 1, 2015

Six Year Treatment Anniversary

Tomorrow is my chemo day and my second infusion of Kadcyla/TDM-1. Tomorrow also marks six years since I've been going in.  It is my treatment anniversary.

December 2nd, 2009 was my first-ever chemotherapy infusion. I remember sitting in the treatment room for the first time, nervous about the chemo I was being given and wondering how my body would react, and feeling like it was all so strange.

I got used to going in over time, it even felt familiar, like a second home.  Yet of course, I looked forward to the end of therapy.  As I finished my original treatment, the nurses gave me a certificate and they all congratulated me.  I took a deep, happy breathe and walked out, thinking I would never have to go back and my butt would never touch a barcalounger again.  I was grateful to be done.  And just three months later, mets were suspected, confirmed in May - and I went right back to the infusion room and that ugly chair.

What "seemed" endless at the beginning turned out to actually be endless.

I have learned how to live with an incurable illness: with the fear, the pain, being sick, losing parts of my life bit by bit.  I've learned that all that really matters is the people in your life, and I have learned that most people are incredibly kind.

Still, there are many who cannot see past themselves. They are too needy to help you or hear you. Some ignore you and disappear.  Some brush off what you say.  Some tell you what to do or what not to do as if it is some sort of talisman that will protect them from your fate.  Many will not extend the type of kindness to you that you need or ask for; and they are unable to understand the hard place you are in, they can only see themselves.  They can't understand the difficulty in learning to face your own death - your obliteration -  or understand that you are living with real suffering beyond what they may know.   What feels like a lack of caring and dismissal hurts more than it would if you were healthy and not experiencing your impending death, because you know there is no time for change or understanding. It feels hopeless, and so rather than try to explain or continue on, we must let go for our own mental health.   One wants to imagine that somebody will wake up and understand, but the reality is that they will not - even after you have died.  Their own viewpoint is the only one they can see.  Many people go through life that way, with blinders on, not only unable to see you, but unable to see anybody.

But this makes the ones who do try to understand, who are generous and humble and kind, who try to learn, so much more special.  And if you reading this, you fall into that category, and I'm grateful for you.

When I originally started my blog and my facebook page, I did it because I wanted to let people know that it was possible to get through cancer treatment and to the other side. I had no doubt that is where I would be.   I am a normal person, nobody special, had no amazing life, was a school secretary and a mom.  If I can do cancer treatment, anybody can.  So I described the tests, the mastectomy, chemo, biopsies - I wrote about what it was like from my perspective, to demystify cancer treatment for anybody who came along and wanted to know what it was like.

When I -shockingly- found out that death would be my outcome, I decided to keep it up.  We need to demystify death in this country too - we are so far away from it. So now I write from the point of view of somebody who will not survive cancer.  And many people can accept that, and some - well, they cannot.

I am still here, six years later.  It is increasingly unlikely that I will be here in another six years.  Even six months seems iffy these days, although I am early into my latest chemo and I can be lucky and have it shrink my tumors.  I imagine I will find that out in a couple months.   But now my life is harder, and full of pain.   I don't want this blog to be a litany of complaints, but I also want it to be true.  They say that when it is in your liver it isn't very painful, but mine is now across my abdomen and in the lungs.  So there is certainly pain that I am having difficulty controlling.

There is no doubt that the end feels much closer than it used to, but that may be the pain talking.   I don't think dying of cancer is a very easy thing to do.

Remember, what we Stage 4 metsters want most is understanding, so if you know one of us, the kindest thing you can do is just listen.  

Happy Anniversary to me.