Saturday, November 15, 2014

Declining Chemo Does Not Equate to Giving Up

At some point, I had thought I would no longer do chemo. It was "easy" to say then, as things weren't looking "too" bad. My tumor marker had been at its highest since diagnosis about 2 months ago. I went away for several weeks, hoping for the same kind of experience I had physically last year, and that my tumor marker would be lower when I returned.

Unfortunately, I came back to an even higher tumor marker number.

I went to the doctor, and thought I might have to walk away from doctors all together - at least for now. I did not want to do a scan, and did not want to do chemo. When I went to the doctor, he pretty much reacted like, "what is the point?!"

As much as I do not want to do chemo, I have not been able to rule it out all together. I wish I could. But I can't. But I also do not want to include it in my life experience at the moment. Apparently there could come a point of "no return," but I am probably not there at the moment, but only the "all-knowing" scan would say for sure.

When I tell people that I do not want to do chemo, I get told, "Don't give up." For some reason many think that I am giving up by not doing "typical" treatment. There is nothing in what they say that acknowledges what I go through when I am chemo-fied. But there is no way that anyone could really know what that is. They just know what they hear. And they just know what they fear.

I was scared before I went to the doctor. I wanted certainty of what I would do. I wanted certainty that what I had done had done me good. But, unfortunately, there was none to be had.

I was amazed how I felt when I got the news. I was emotional, but ultimately I was also "eerily" calm. Why wasn't I more scared? Why wasn't I more upset? Why was I mostly calm?

I never got THE answer; but I suspect it had something to do with the fact that I was probably doing the right thing for myself. I know it defies what most think is right or best. And there is a part of me that wonders if I know what I am doing.

But what I do feel is calm and clear - just like I did when I chose to take my trip, despite the scare tactics. And I am still here.

I - more than ever - want to prove the doctors wrong. I know many want to do that, and there are many who only wind up proving them right. But there are also those who DO defy what the doctors think they know. I really hope to be one of the latter group.

I don't want to go anywhere just yet. But there is no way to know what will happen. I think of Anita Moorjani's tale of being in the end-stage of her cancer experience and in a coma. She came back to life, and is now healthy (Dying to be Me).

I believe there is more to life than we realize or know. Unfortunately, that does leave a lot of unknowns and uncertainty.

In the news was the story of a woman who was dealing with ovarian cancer. She spoke of beating it. She spoke of having a future and a family. She died.

When I hear stories like that, I so hope that that will not be my story. I feel like I can make this work somehow. I am loving my confidence and optimism at the moment.

Yesterday I checked my account balance, and I have about a month of money left. I could have really have been upset. Instead I found myself dancing, singing, smiling and laughing. I had such a good day. I was incredibly grateful for the amazing people I have met in the last couple of days. I was grateful for the excitement I feel about so many things.

It is difficult to feel excitement and fear simultaneously. Actually, perhaps ironically, some say it is the same physical expression in the body.

A part of me feels I should share all of this publicly, but at the same time, I find myself questioning it. I get concerned that people think I will die, and they will run - or avoid me even more. I find myself wondering if I appear to be OK and/or happy if people will realize how much of a need I still have. I often think I appear too good to be someone "deserving" of help.

It really sucks.

I mentioned in a previous blog post that Jay had written me an email about how he felt about me, my life and cancer. This is what he said, "I DO believe I will see you again. Your strength and fight amaze me. If anyone can beat it, you can. And to be honest, when you left last year, I didn't expect to see you again. You've already exceeded my expectations,  so I am not going to sell you short again."

He spoke to the "elephant" in the room. I am sure many people think a similar thing. But no one wants to say it to me. It is no wonder that people who are diagnosed with cancer want to keep quiet with what they are dealing with. I don't blame them one bit.

The fact is I am still here. The fact is that I have NOT given up. The fact is that I will seek to continue to do what I can to listen to myself and do what I can to as fully and completely live for as long as I have. When I have told people that I am declining chemo, there have never been the words, "I am giving up." No one has ever heard me say those words. I might have come close a few times, but I have never said it in current tense.

Since I have not given up on me, I would appreciate you not giving up on me, either. I would also appreciate it if you would be a bit careful about any assumptions you make about me, my decisions and my situation.

(I bet others in your life wouldn't mind that approach with them, either. :P)



  1. Another beautiful piece of writing. Elizabeth, your spirit in the face of all of this is truly inspiring to me.

    You are in my thoughts ... and in my heart ...

    Much love,


    1. Thanks. I appreciate your comments - and support. You have been awesome during these challenges.