Tuesday, April 07, 2009

here goes nothing. -from Rebecca

So I am a week into chemo. I am doing better, i.e. I have more energy and doing more. The house is filled with family. I generally do not have a voice. Sometimes it comes and I use it, sometimes it goes. My voice problem seems to be coupled with a reduction of esophageal motility. That means my esophagus does not work. It is like someone took an axe and hacked at my neck. My head is still attached (despite what my parents said), but my vocal cords in my windpipe and my esophagus don’t work very well. It has been hard literally having my voice taken away from me. This blog is something I am doing to cope with it. Luckily, I can type. I hope you will not regret that.

This is a bit scary to talk about, but I am trying to take the elephant out of the room. I am dying. Very slowly, bit by bit, but it is happening. It is going to be a while till I am dead, but its gonna happen most likely before I am 50. We do not know if it is going to be 6 months, 4 years or what. My healthcare (chemo included) is aimed at prolonging my life, not making the cancer go away. It is just as hard to watch you all worry about me as it is for you to worry. I know this is strange sounding. But it is ok that I die.

Don’t get me wrong, I am not on my death bed. It is still going to be a very long haul. Another one of the reasons I am telling all of you this is because for those of you who are being a physical help to my family and want to continue to, pace yourselves. I may still be dying for years. No one knows. I am starting to understand the depth of the not knowing. Sometimes I think it would be easier to know, even if it meant dying sooner. It is the not knowing that can be so hard, from the diagnosis time to the learning to live without waiting.

This process has really gotten me thinking about purpose on earth and all. I have found a great deal of comfort in the Buddhist teachings. I am going to try to start talking to everyone about this to open some doors for communication and to share this amazing journey I am on. I am not talking to my kids in these terms though, and I would appreciate it if you did not either. They are on the journey with me and we are all working it out, day by day. That is enough for them.

Buddhism talks about impermanence. That nothing is permanent. I am very aware of that right now as I am slowly losing functioning of bits of my body. I don’t know when or if I will get my voice back. My esophagus thing is simply annoying, not life threatening. Who knows, maybe it will go away, or maybe it will be another thing that just stops working. I am breathing better than I was a couple of weeks ago… With all of this impermanence, I am learning to appreciate what I do have. I have so much it is crazy. I remember feeling like that when I was first off of radiation 8 years ago. I got to go to work. It was so exciting. Everything in life was grand. I think that lasted almost a year. I am slowly getting it back in reverse. As I lose things, I see how much I have.

I have never been afraid of death. Being dead is easy. It is getting there that is the hard work. I am watching people be afraid for me, sad for me… I am not the one who is going to be sad when it is over. I’ll be dead, much easier. I want to give as much as I can before I die and help everyone I can before I die. That is also how I got to the whole spiritual path thing. I have done the ‘running around in circles caring for people’ thing and that is great, but never ends. The list never shrinks and people are still needy of things. The more you give the more they need (not that I mind, it just does not seem to help). I can no longer do that and I do not believe that the actual acts of giving were the things that helped them. It was the love behind the acts that helped, deep down. So now I am just skipping the acts and going straight for the love. I am learning how to love everyone, slowly but surely. Why not love every little thing? It can only make more happiness. I am testing this theory. So far so good. I am happy when I am loving. The ones I am loving are also happy when they are getting my love. I am learning not to meddle, not to nag, not to force the ones I love into doing what I think is right. I am learning to love them right where they are. It has been hard for me to let go and let that happen. Instead, I have pissed people off who I have tried to ‘help.’ Some of you may not know this about me, especially looking at my house, but I am a control freak.

I have a bad cough. There is a 40% chance that the chemo will shrink my cancer 50%. We do not know how long that is going to take or how long that will last. My original (8 years ago) odds were 30% that I would be alive in 5 years. So who knows. It is all statistics that keep on changing.

So that is the scoop. And I really am open to talking to everyone about this stuff. So let the floodgates open. Love to you all.


Nancy said...

Rebecca - what a powerful set of thoughts you have put down to (digital) paper. I am awestruck by your clarity and by the generosity and courage behind these words. As one who has been touched (and in comparison to your "journey" it was truly just a touch, a light brushing) by cancer, I can sense the power behind your words and, oddly, the strength you are gaining as you travel down this path.


Karen said...

Hi Rebecca, I am an old friend of Andy's from Lotan days. We haven't seen each other in 18 years. It's a life time ago. We actually friended each other on facebook not long ago and he posted a link to your blog which I opened today. I just wanted to let you and Andy know how amazing your journey is. Death and dying is not a comfortable topic for most of the human race but your frankness and openness to share is an amazing gift you are giving us. I have very fond memories of my time on Lotan and with Andy and am not surprised that Andy has found a life partner that can touch souls through thoughts and words. I want to thank you for sharing and for letting me learn through your journey. Please send Andy my love, My troughs and prayers are with your and your family,

Karen Antwarg Shiffman

Rachel said...

Rebecca, thank you for being so honest and open about your experience. I'm awe-struck by your bravery and your wisdom. By the way, your practice of loving-kindness must be working because I can feel it all the way over here in New Mexico.

Besos y abrazos,


Jim Offel said...

Hmmm....I must have been in Nancy's account when I put that thought in, which in turn must have seemed confusing to you. Anyways, the "Nancy" comment was from me (Jim).

Denise Wolf said...

Hi, sweetie. I love what you wrote, and where you are emotionally. I'm especially touched at your comparison of the bounty you feel now, as you are losing things to how you felt after radiation, when life returned to you in more energetic form after its hiatus during treatment. You are my guide, sister. I'm glad you are using this blog as your voice when your physical voice fades in and out. Even should it come back to stay, I hope you will continue to use this blog this way. I find that writing in a forum like this and speaking in person are complementary but not at all equivalent. There's no redundancy in doing both.

Much love,
d (who goes for a bone marrow aspiration tomorrow to look for you know what...my marker went up again, further. consider me a sister in suffering, and hopefully enlightenment as well.)