Monday, December 16, 2013

An Unexpected Calm

I am sitting here, fiddling. Fiddling like I do when I start to zone out, but not enough to get up and go to bed. It seems as though I am perhaps meant to write this while it is still quasi on my mind. Maybe. At least that is what I will tell myself as I slightly trance-like stare at the screen while I type.

Today was such a mixed bag. As I said earlier, it was going to be my last visit at this particular facility. Well, as it turns out, I may have one more. It may take as much as a month after my new insurance is registered with them to get me moved over. As a result, I am not able to get my next Avastin treatment at the new place when I am supposed to, in about three weeks.

I was saying many good byes today. Now it seems it may be a long good bye. I feel like I am losing some friends. Some said it was more like I was gaining some new ones. Perhaps I would feel more that way if I had contact with those I know there outside of the environment. Maybe after today I will, who knows?

More than one person said something to me about "knowing you," I would find a way to make this transition into something great. It was something I was even considering on my own. Maybe there are people I need to meet elsewhere that I won't get to meet any other way. It sure seems like a pretty sizable inconvenience, but I have to believe it is in some way not only worth it, but necessary.

I also met some very wonderful people. It is always what happens when I speak to those around me. I was giving out the postcard that I created for the event I recently attended. While it is a marketing/advertising piece, it is also a piece of art with a beautiful message, so I was leaving a "piece of me" with those I have enjoyed knowing there.

Then there was the "BIG" thing: my tumor marker.

I had hoped, given the way I felt, that the news was going to be good. In the back of my mind, I wondered if it might not be as good as I might hope for, but I certainly wasn't feeling like it would be "bad."

Well. I was not exactly right. I saw the oncologist without knowing the marker reading, and we spoke a bit about what the possibilities would be, depending on what the number was. I had an expectation that it would be good, although, interestingly, when they drew blood through my port, I had them leave the access in - just in case I was going to get Avastin. I truly did not anticipate getting it, though.

But then, I was told that the number was not only higher, it was outside of the "normal" range. I was so sure I wasn't going to get the treatment that I did not know how to respond. I basically said I wanted to go to my other appointments, consider it, and then decide.

I started to feel like I would do it, but I wanted to percolate on it just a bit. By the time I was done, I felt OK about the treatment. I wasn't anxious. It didn't upset me. My body felt like it would be OK, and because it felt that way, I decided to proceed.

It is only a 30-minute treatment, but it took forever for them to get what they needed to get things going. Then, about 20 minutes into it, the nurse handed me paperwork that included my blood work. I went to look at the tumor marker section and was shocked to see a different tumor marker number - for breast cancer! It was a little high outside of normal, too.

What the heck?!

I immediately called the nurse. I asked if she could pause the treatment. I wanted to know what the CA-125 number was, not the one listed. And did the one listed mean something to me? Did it mean something about breast cancer? Was it a mistake? Was it supposed to be someone else's blood work? I was confused. I was also hopeful. Was it possible I could have a lower number than previously thought? Is it possible I was getting the treatment for no reason?

I looked online and saw that the marker listed can sometimes be affected by someone who is dealing with ovarian cancer. When someone came to explain things to me I was told that both markers have to do with hormones, and that if one was elevated, the other one likely was, too. I was offered the CA-125 number tomorrow. But I wanted it, like everything else, today. I had made a decision for treatment based on information that was potentially inaccurate, and I wanted to know if I should continue.

It was supposed to take half an hour to find out. I think it wound up being much longer. I say "think" because I really did not notice the time. It just kept getting later and later.

At some point the nurse returned, and told me the number. I think it was 29.something (about 10 below what I was told it was with the other marker reading). It is the highest it has been since my hysterectomy. Back in July it was 24.something. It has been fairly constant, and in two months it barely budged - even as I travelled and was off treatment. But in the last month alone it jumped about 10 points.

I decided to finish the treatment. I wasn't particularly happy about it, but it felt "OK" to my body to do. It would be inconvenient with a pending move, and with how it zaps me of energy, but it did feel like the right thing to do at that moment. I had gone there pretty much absolutely certain I would not go back on it, but given how OK it all felt, the change of course felt like the right thing to do.

It is one thing I definitely learned on my trip. One moment I would think and plan something, only to have it uprooted by what came in the next moment. I have learned that it is quite possibly unlikely that the something I think I know in this moment will be what I will choose in the future and it has made it a lot easier for me to roll with the changes and unexpected glitches.

I have to say that for as much as it made me a bit emotional and upset, I was mostly calm today. I even took the mistake in markers mostly in stride. It felt pretty empowering to ask the questions I did, and to make the decisions I made - not on a doctor's stern suggestion and say-so, but from a place within myself. It was a place that I even felt peaceful about, even as I wasn't exactly happy about the choice I was making.

It was kind of surreal really. I feel like I could have, perhaps, should have, been more upset. More worried. More concerned. More, oh no! But I wasn't there. I was just present, and I rolled with the "punches" that came my way.

Deep down inside of me I keep feeling like things are looking up, and looking good. In some way I am unable to fathom the news I got today. It wasn't "supposed" to go that way.

I posted on Facebook about what happened in very short form. I am so appreciative of the incredible support of those who posted a response. I normally wouldn't necessarily be as appreciative of "cheerleading" in the face of something that I felt devastated by. But the thing is, I did not feel devastated. This feels like a bump, and it feels to me like the things people are saying fit me and what is going on right now. At the moment, what could potentially at another time be seen as "cheerleading" feels more like validation for me.

I feel like I can be here for a good long while. That feeling at times feels so strong. I suppose it could be wrong, but it just feels so right, I can't even imagine it being wrong.

If this is a test, I so want to pass. If this is a test, I am wondering if I already have.

I am sticking my tongue out at you cancer with my fingers in my ears and my other fingers waving. My body and me, we have no time, nor desire, for you. Thank you for your contribution to the cause. Now please just be on your way. I want to be here. I need to be here. I need to be heard. I need to do so many things before I leave this place. Please understand that you just need to go now to make room for the person who is healthy and capable of being all that she is meant to be in the world touching, and being touched by, others.

Na, Na, Na, Na. Despite everything I am still here and I have lasted this long. You've done your job, and I am truer to myself than I have ever been. I have said things I would have never said before. I have taken risks I would never have taken. I have been a person I never imagined being. Everything you tried to do to stop me has failed. Your attempts were valiant. They were bold. They caught my attention, my time, my energies.

What you did worked. I say thank you with a smile. I appreciate life more than ever. I am more alive than ever.

Please just go now.

Pretty please, with sugar on top?

(We all know how much you just love sugar!)

Thank you.


  1. You are very strong and very brave for sharing your journey with the world. I don't think I could share it if it were me but then again I'm not in the situation. I am sure other people in battle are finding a lot of encouragement in your honest words! Bless you!

  2. You are very brave. Thank you for sharing your story :-)