Wednesday, March 10, 2010

The Latest

I had treatment on Monday, and treatment days mean I see my oncologist. This was the first time I had seen him since my scan results came in three weeks ago. He said the results were 100% positive and that we would continue on this path indefinitely: treatment every three weeks with scans every nine weeks.

When asked if he now believed a cure was possible, he said that, in his experience, Stage IV cancer could not be cured. This is simply because, even when it looks like it is all gone, it is often lurking, too small to be seen. So, you can never assume you have a cure, even when it looks that way. However, he also acknowledged that we were "playing football with United States rules on Mars" so, in other words, he has no idea what to expect from T-DM1 because he doesn't not have any history on this particular drug. I suppose anything is possible, but it is nothing he has seen so far. So, what we are hoping for, rather than a "cure", is an extended period of NED.

He expressed hope that we would have the problem, come 2014 or so, of deciding whether to continue virtually forever on the drug or risk what might happen if we stop it. That, in his opinion (and ours too), would be a mighty nice problem to have given where I started. His recommendation was that I not allow anyone to pry this medicine out of my hand now that I have it. I am in complete agreement, although the practical thought of going through treatment every three weeks in perpetuity is a bit exhausting.

As far as potential future surgery goes, he is now of the opinion that, depending on the next scan results, a lumpectomy followed by radiation might suffice rather than a complete mastectomy. This was a very pleasant surprise to me, as I had never even considered it as a possibility. In fact, the last time was had talked surgical options we were discussing double mastectomy and the removal of my ovaries as well, so this is a huge leap from there!

So, needless to say, the news was all positive. I am not sure, then, why I have been a little sad ever since our visit. I suppose the reality of this being with me for the rest of my life is hitting me. Given my initial rapid death sentence, I feel like such an ingrate for being even slightly disappointed with where I am now. Any month I am given is a gift, and I am acutely aware of that. Nonetheless, I am realizing now that the initital "I am going to die soon" fear is abating, that I am never going to be the same again, and that is hard to accept. I think this must be true of any major change in life (even run-of-the-mill aging, really!).

But, accept it I must, and accept it I will, and I will gladly hustle my tush down to UCLA for treatments, blood draws and scans 6 times a month with a smile on my face and a prayer of gratitude for every time I am able to go. And in the meantime, I will be hoping that the yet-to-be-written rulebook for Mars will be to my advantage.


Tiffany Hayes said...

You inspire me! I am sure the rule book on Mars we be to your advantage. As far as all the other emotions, well, let me say this journey you are on can only be submursed with a wide range of emotions. You will overcome, it will all be good!

With love,

Sarah McCormick said...

Dear Friend,
I think I can...I think I can...
I know you can! I am your biggest fan, Love, Sarah McCormick

Jason Schalow said...

I don't think you are an 'ingrate', just,well...human.

And as much as that probably seems like a disability to you, the rest of us are glad to have you counted amongst our number, as you're certainly a better advertisement for the continued meritoriousness of the species than most of us (self included).

Annie Bizzi said...

Just wanted to add, if anyone can come away from this looking as good as you have, believing that this miracle is "in progress" will have to get you through to that NED party--I'm a believer, and I am sure there are many, many others!

anna lisa said...

Hi Suzanne,
At times when I'm feeling down, or that I'm losing heart in any way, I'll have that "Aha!" moment and realize that this pain, simply lifted up is POWERFUL...For you, the ones you love and the whole world. Especially for those who don't know about the meritoriousness of uniting their pain with the cross of Jesus. Indeed, when struck by this reality, I often smile and find that the "yoke" is sweet again...
You walk a special path. I can't wrap my brain around it. He has chosen you, hand picked you among many to accomplish this. You will embrace other children in heaven that you helped "give birth to". Rest in His heart,