Saturday, April 11, 2009

Post passover

The latest medical news comes from a dear doctor friend who has just recently joined Kaiser. Andy asked her to review my records and give us some insight into what is going on. SO. Boy did she help. Turns out that the ENT lied to us. I am really dealing with some anger around this. He said that I did not have vocal cord paralysis, when he put in my report that I do. One of the vocal cord nerves, for some reason, goes from the brain to the chest and back up to the vocal cord. Turns out my cancer is leaning on it. That is what the oncologist thought in the first place. I had a polyp too that did need removing, so that was done well. It has just been strange that I haven’t gotten my voice back. My throat also hurts, not at the top, but half way down my neck. The doctor said a while ago that is because I am straining muscles in my neck to talk. Those muscles need to rest. Ugh. I am not always patient and persevering in this. I get fed up too.

The other medical news explains my energy level going up. The cancer is leaning on the pulmonary artery that takes blood to my lungs. With that pressure, the lungs cannot get proper oxygen to my body and I get very tired. Since chemo, I have had more normal energy. That hints that the chemo is working and that the cancer is not leaning on the pulmonary artery so hard, so I can bounce off of the walls a bit, as Tiggers do.

Speaking of emotions. It is really easy to tell everyone how calm I am being through all of this. It is hard to admit being so scared. Especially because everyone thinks I am so brave. How do the brave get to show their fear without disappointing or scaring everyone. (If she is brave and scared and I am not brave, it must be really scary…people think) So I am going to tell you. I am scared right now. I am scared of losing bits and not getting them back. I am scared of the physical pain that this sickness is going to cause. I do not want to die on morphine, totally out of it, but I don’t like pain.


Richard Dale said...

Bravery/courage is facing difficulty in fear. If it wasn't scary, it wouldn't be brave!
Sending all love.

Bridget Wynne said...

Rebecca, thank you for your open conversation with all of us out here, including me. I am so sorry to hear that the ENT person was not honest with you. That stinks.

It makes sense to me that you are scared. Being totally brave seems impossible, as far as I can imagine. I think your most amazing bravery is in communicating with yourself and with others, and whatever the content is, as long as it's real, then that counts as bravery. So I suggest getting rid of the bravery measurement and replacing it with great admiration for yourself for reaching out and in.

I also want to say -- before we go to our 3rd seder in a few minutes -- that your explanation of love being the basis, and what you actually DO with people being not as significant, is truly deep. I've been thinking about it a lot for the past few days since I read your post.

I'm glad you are getting more energy and hope it continues.

I also hope that -- if you want it -- you've had some meaningful Passover celebration.

Sending love to you, Andy, Ze'ev, and Merav --


Bridget Wynne said...

I have been thinking about what I in particular might have to offer you, Rebecca, on your letting-go path, and have a couple thoughts.

The first is the offer of helping you write an ethical will, if you might like to do so. It's a Jewish tradition, but I'm sure it exists in other traditions, too, as it's such a basic idea. If you haven't heard of it before, it means communicating some of what you have learned -- wisdom, experience, beliefs, learnings, and so on -- for your family and other loved ones to have after you die. It may seem like a holding-on practice, but I think it could also be the opposite. Meaning, it can be a way of sharing some of what is truly important to you, so you know your loved ones will have it and that you have said it, and then you can feel at least some sense of completion about it. I hesitate to say "completion," since there could always be more, but hopefully you see what I mean.

I have taught about this and worked with people on it before, and would be glad to do so with you if you might be interested. It can be a beautiful gift.

The other idea I have is something I have thought of a number of times but never done. It is to have a gathering for a person who is dying at which they can hear all the wonderful stories about them and letters to them and so on that people usually would wait to share at their funeral. I have often led funerals thinking, "If only the person could be here to experience the amazing influence they have had, and all they have taught." I offered this to a friend of mine who had metastatic breast cancer for years, and she decided not to do it, but I know others who have done so, and it has been an incredible experience. I would be glad to organize this or help organize it or play whatever other role you might want if it sounds like something you would like to consider.

If neither of these sound like anything you want, but they inspire any other ideas of what I might offer, I would truly like to know of anything else that occurs to you.

Thinking about you a lot and sending love,


Molly said...

Love you, Rebecca.

Denise Wolf said...

Rebecca, it's ok to be scared. It is human to fear loss, and pain, our own and that of our friends and family. I hope you will always feel comfortable speaking your truth here and elsewhere. The truth does indeed set us free, because it flows through us like water instead of getting dammed up inside. Let your fear speak, cry, yell, plead. I think that makes more room for love and hope.

Michael Lerner talks about hope in his book 'choices in healing'. He says it is important at all stages in life, even when very close to death. He says that what we can hope for changes, but that hope is always important. So what you (and I) might have to work on is thinking through what new hopes can replace the old ones that no longer serve. I really need to give you that book, if you don't already have it. There's another I really like, which I lent to a friend from Commonweal with metastatic esophageal cancer, called Dying Well. That book gave me a lot of hope that such a thing is possible. It is full of vignettes, stories about people's dying process, and how much emotional and spiritual growth there can be at the end of life. It's by a guy (Byock?) who started hospice in this country. Once I get that back I'll pass it on to you as well if you are interested.


Rachel said...

"Courage is doing what you're afraid to do. There can be no courage unless you're scared."

~Edward Vernon Rickenbacker

Rachel said...

I believe your bravery comes in your willingness to talk about what you are experiencing in such an incredibly open and honest way, including the fear, the pain, the love, the insight...

The Whole Enchilada (as we say in Nuevo Mexico).

Sending back tons of love your way,


Jessica L. said...

I finally pulled my head out of the sand and read your blog. Dang! Can I stick my head back in the sand?

I love you.

PS I had a lovely Spring Break. Have heard nice things about your Seder. Happiness goes on in the midst of all this yuckiness.

Anonymous said...

I wrote a long e-mail reply (which I am glad to post here too if you prefer - plese advise, Andy) ...but in the meantime, my cc to Andy bounced back so not sure that I had the right address for anyone so Andy please do send me a quick e-mail just that I can know that I have the right address for you and that my electrons aren't being lost in the ether...Rebecca, I sent you an e-mail reply of your own. Hope it reached you. Much free association.



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