Peeking out at the world

Andrew Wyeth - Christina's World

Well, I had my appointment for biopsy results  and discussing next steps (and I had my second opinion, too).  Even though the news was not unexpected, it kind of knocked the wind out of me.

I am now a stage IV cancer patient.

Sigh.

It's weird because I went into the appointment fully expecting this.  It's been a slow build up of clues from the pain, to the continuing and worsening pain, to the not ruling it out bone scan, to the highly suggestive of cancer PET-CT, to the fact that they wanted to biopsy, to the fact that no one called me quickly with a good report from that biopsy (usually bad news gets the quick calls, but in a case like this with an appointment upcoming, I would have expected a quick call for good news not bad).

I knew what my oncologist would say before my husband and I even entered the room and still it shook me.  Shook me hard.

I'm not an out of control kind of person, I cry at very sad or very happy stories, pictures, commercials, but I'm good in a crisis.  And I was my very in control self.

True to form, I listened to my oncologist, took notes, and asked questions.  I talked with the clinical trial coordinator about the exit kit for the clinical trial I was on but am no longer eligible to continue now that I have metastatic disease, and got some information about a new clinical trial just opening up.  I chatted about the weather and my not-so-easy veins with the technologist who drew my blood, and sat calmly going over a side effect list with the nurse who gave me my first dose of Xgeva (an injected medicine that makes it harder for the cancer to continue to eat away at my bones).

I think, outwardly, I really pulled it off.

But, the truth is, it's a damn good thing I took notes because I don't remember a whole lot about those conversations.  My oncologist called me yesterday to see if I had any questions about the new trial for stage IV patients that she thinks I would be a good fit for.  I had read the materials after the appointment and thought I had a handle on it (and was leaning against it), but on the call (a week after the appointment) she (very patiently) explained why all the things I had thought the study materials had said weren't actually what they had said.  She was kind enough to say several times that she could see how it was confusing, but the thing is I reread the materials last night and they were pretty darn clear (and sound like something I do want to be part of).  The problem wasn't them, it was me.  I swear I thought I was functioning mentally, but clearly there were some serious gaps.

My mind doesn't seem to want to deal with this at all, and I've become at once obsessed with reading all about this and at the same time pathologically afraid of dealing with it.

I've told people about the cancer only when I felt I really had to tell them or risk making things worse by my ongoing silence.  I've avoided Facebook, forums, and the telephone.  As you may have noticed, I've been keeping away from my blog.

I wonder if this part would have been easier if I had been more emotional from the start?  Maybe I would have gotten it all out and been ready much sooner to move on and adjust to my new identity as the new stage IV me?

The good news is I'm starting to feel more together.  Look, I'm even blogging!  I've been telling myself and the people who love me how many people with bone mets can go on like this for decades, but now I'm actually starting to hold that message in my own heart, as well.

I don't know what the future holds, but for the moment, I'm starting to be willing to just keep my head down and keep trying while I wait to see.  I believe just like this stage IV diagnosis was a slow build up of multiple results that more and more strongly suggested the outcome, that when my cancer evolves around first one treatment then another and another, there will be time to understand that fact before the full reality of what it means actually happens.

It may end up differently, but I just can't see a way to make life work and do the things I need and want to do if I'm constantly telling myself that the end is neigh.  Especially because there's a decent chance it won't be (see what I just did there?).

For now, I'm banking on having some years to go and hoping science will come up with new treatments faster than my particular cancer comes up with ways around them.  And beyond that, I realize that none of us ever get to live forever, but I'd really like to be here long enough to see a cure so I can damn well die later of something completely different.

So do not worry about tomorrow; for tomorrow will care for itself. 

Each day has enough trouble of its own.  Matthew 6:34