November 8th, 2005

Book Cover

A Maze'ing Ramble!

Jeff and I met with the oncologist today. We both like and respect her. I requested "Shared Decision Making," so I now have a print-out of percentages. I sit with it, while Jeff feels strongly I have no choice - chemo is the way to go, and I sit with, if I understand it correctly, the fact that I improve my odds by 11% with chemo. That is a lot to go through for an 11% increase. On the other hand, that is an 11% increase. I suppose what most concerns me this evening is the probable loss of some cognitive ability with chemo. Again, it is a percentage loss. I just hate to lose anything. I feel like my cognitive abilities are already disappearing with all the stress of this. I don't have too much more to lose. : )

I know that how I respond to all of this is up to me. The oncologist knows that too. She asked me to just sit with it all until Monday. She asked me to trust my gut on it. My gut says chemo, and my mind is looking at the statistics, and feels a slight concern. I wanted what wasn't even given to me at birth. I want a 100% guarantee that I will be perfect in every way after radiation, chemo, and a hormone drug I absolutely am required to take. There are side affects each step of the way. There is no question on radiation and the drug. That is a given. The question is chemo, and I sit tonight considering what 11% means to me. I've never been a gambler. Dr. Love's Breast Book says it is a crap-shoot.

The oncologist says in another few years there will probably be a test that says whether or not the cancer has spread. We know it has metastized. Isn't that enough for me to just say yes to chemo? Yes, it probably is, but I sit tonight humbled with all of it. I think she is right in telling me to just let the decision go for a few days, and I will try and do that.

I meet with a highly recommended holistic practitioner tomorrow. On Thursday, I will go to a chemo training meeting so I better understand the experience of chemo. I guess it feels odd to go through something that I know now is four months, plus three to four more months of not feeling well, with possible extreme side affects for 11%. Again, Jeff says how could you even debate it, and, somehow - thank you all - this is my place to think - how could I even debate it - 11% - that is a lot, and though a lot is a piece of land and not a way to express amount, I will say it that way. It is my piece of land, for Goodness Sakes. I put down my stakes. I think I will take chemo in hand, and beat the odds, and keep what cognitive abilities I still have left.

It is just so odd to know so clearly I am a guinea pig, and yet guinea pigs are cute, innocuous, and adorable. I move from chicken to guinea pig and step out of my cage. Thank you for your help as I ramble through my maze.

Book Cover


Okay, since I am so good at math, Jeff is going to explain this for me and for you.

To start at the beginning, in the next ten years, I have a 3% chance of dying from something other than cancer, so, there is that.

All right, next step - Radiation is a given.

If I only do radiation, I have a 37 % chance of relapse and a 60% chance of no relapse.

If I do hormonal therapy in addition to radiation, I have only a 19% chance of relapse and a 78% chance of no relapse.

If I also do chemo, I have a 11% chance of relapse, and a 86 % chance of no relapse.

See why I am worried about losing my cognitive abilities? I struggle to understand. Jeff explains more.

If I look at the relapse numbers, then chemo almost cuts my chances in half, because it goes from 19% to 11%.

If I look at the survival chances, it goes from 78% to 86% which somehow seems like a smaller increase.

Okay, once again, I see that chemo makes sense. Thank you cognitive abilities.

On the other hand, what if I just went to Mexico, and became a beach bum. Jeff says that won't change the odds on whether or not the cancer is still in me. I believe my shock today is that I thought chemo gave me an even chance again. I somehow didn't understand that it wasn't a given that everything roaming around would be knocked out. I understand that all of this is new and no one really knows. So much of this depends upon my attitude, which I think until today has been pretty positive.

Another correction. I misunderstood also on that in two years they would be able to diagnose more easily. It seems that that may be in the oncologist's lifetime, and she looks young to me, so, I don't think I am going to be around for that.

It is so odd. At times, I feel that my life has been so full that I could easily move along, but somehow now, when I am right up against this, and in the cancer area of Marin General which is quite nice with lovely artwork - a snazzy mobile, and a ladder of stairs you climb one step at a time - well, I just feel like I am in pre-school and people keep telling me it is just a few days until Christmas, and yet, each time I move another step along, it really is a month, or maybe there is no Santa at all. You see, I really am down, because no one knows for an absolute fact that Santa exists more than I.

I'm not sure this blog is the best way to do this, and yet, I know I don't want to discuss this any other way. I am just putting this out there to get it out of my head, and I really don't want to talk about it. The oncologist told me to wait until Monday to make a decision, and I think that is exactly what I will do.

Great care to you all!! I hope you each are enjoying each and every precious moment. All is still fine with me. I am just a wee bit disappointed that chemo didn't mean I had a 100% guarantee, and I understand there are no 100% guarantees. I feel like a spoiled child tonight. I apologize for my tantrum.

Ah, the clouds just parted to show me the moon. All truly is well with me.

A new note - Jeff is now depressed over the 3%, and the realization that is hitting us both. You won't believe this, but we now both realize that the odds are 100% that we are going to die, and this dopey little graph makes that very clear. I say I am deciding that I will dress as a clown and parade through the depressing oncology department. Jeff says that then I will definitely end my life as part of the 3% because someone is going to take that stupid artwork ladder with its positive message of "one step at a time" off the wall, and hit me over the head with it. We are now in laughter mode, as I hope are you. The ladder is actually lovely, and I commented on how much I liked it when I walked up the stairs this morning, and that is when I thought chemo was a given, and in reality, it still is. The oncologist would do chemo if she were in my shoes, which actually are very cute - a wonderful brand - and so, I will do what she would do, recognizing that as has often been said, offering someone a choice is often just a curse. We sometimes want to be told just what to do.

So, it is getting time for bed. Sweet bed-time stories to all, and a deletion of this update of the blog.

The moon is now out in full light - a half - resting joyfully on its side.

Love to you all,
Book Cover

moving along -

So, I forgot to mention that all those statistics are for "alive and without cancer for ten years."

I think what happened today was that I was clear on doing chemo. Then, she seemed to offer a carrot by saying that of women doing radiation, "60 out of 100 women are alive and without cancer in ten years." I jumped at that, thinking, wow, I don't need to do chemo. I can be one of the 60%. Then, as we went down the bar graphs, I really started to wonder since it seemed like there wasn't enough benefit being gained, but we all talked about it tonight. Isn't it worth doing it even for a 1% chance? And the truth is I am going to do just fine at this, and be around for another 30 years and you are all going to be sick of me and my blog!

Sleep tight!

Book Cover

Evening -

As the moon moved across the sky tonight, we all sat and talked, Steve, Jeff, Chris, Mandu and I. I realized that today was the first time I have felt anger about this whole thing. I have been so engrossed in the receiving of so much support and love that there was no place for anger.

There was a young woman there today with her husband. She looked very sick and her head was wrapped in a turban. I think her image is what has most stayed with me today, and may be what so upset me. I thought the people there today would be older, but there are young people. Perhaps that is what I found the hardest.

I have lived a good life, and I have 30 more years to go. I feel for the young people who are going through this. That is hard to understand. I think now of Alicia who writes her story for the Chronicle. I want our young people well.

Anyway, I feel myself back to contentment tonight. I continue to say and feel that in the moment my life is just fine, and that is the lesson I know is in all of this, and I worry about our young people and why they need to be ill.

I continue well!

Take care!!

Sleep fully,

I wrote the following poem this morning. It has been quite the day. The tree outside the oncologist's office had eleven leaves left on it today. I will see it go from bare to full hair, just like me.

This Morning

one friend says her defenses are falling
and I see the tree losing its leaves
to expose the trunk
lifting branches to offer sky
a place to sit in birds and rest -

another sends a photo of a waterfall -
a match lighting the dark -

I feel myself dropping
like water
like leaves
to open form
with only the opening
and closing of breath -

the fire in the night