Wednesday, January 24, 2018

Woman without a Plan

I've mentioned before that one of the most frustrating things about Stage IV cancer is the inability to plan your life. Every few weeks, everything changes and what we thought we might be doing is no more. For a woman who could map out practically her whole year at work, and for a hubby who works the logistics of every step, the frustration practically suffocates us.

After a lovely few weeks alternating between cold and decent weather in Texas, we drove the long drive back to Michigan for a week of doctor appointments and procedures. We knew it might turn into a longer visit, and it has.

It began with an MRI. Remember those spots on my liver? The PET scan didn't light anything up. After consulting with the radiologist, my onc (my regular oncologist) decided to order an MRI. Again if those spots -- there were two of them -- did anything, I'd get them biopsied.

An MRI showing lots of small white spots on a black background, a faint hint of the shape of the liver throughout.
This is someone else's scan, but mine looked
similar: Lots of little dots floating in space. 
Well they didn't. They are cysts. But, unfortunately, they found "there are multiple (>15) T2 hyperintense, T1 hypointense peripherally enhancing liver lesions consistent with metastases. "

The dreaded liver mets. Crap.

We never would have seen them without worrying about those cysts. It's a damn good thing my onc is so detail focused. So what's next?

First, we're going to deal with my chest. I haven't complained about it much here, but it remains the biggest, most visible pain in my...well, chest in this case...about this cancer. Aside from my perception that it remains the focal point of all the cancer -- all of it coming from one stupid tumor that woke up -- it really causes me daily concern. Redness, minor itching, weird nerve ending issues, bleeding and necrosis, and it just won't go away!! I consulted the amazing radiation oncologist and he's going to zap them into submission. Good. While I'm doing that, I'll have another round of the Xeloda.

I am disappointed about that. I was sure that this round of Xeloda was going to show progress. Unfortunately, that doesn't appear to be the case, but it is doing something. I'd be in much worse shape without it. Apparently, it works well with radiation. So we continue for now.

I also had some bloodwork drawn, and they are going to take some previous samples from past biopsies. They are going to a genomic testing lab that will look for mutations in my genes and in my cancer. This detailed genomic testing may help identify the best treatment, one that will really work. Their motto is "data driven treatment." Be still, my beating heart! You know how I love good data.

I do have to worry whether my insurance will pay the thousands of dollars it will cost, but it will be worth it. I'll borrow money if I have to. It's been frustrating that, to this point, we don't have enough data to target the cancer properly. This may be a big step. It's the new personalized cancer treatment you read about in the news. I'm pretty geeked. 

I will still get the much littler tumors in my liver biopsied. That's data too. Again, we still suspect HER2+ cancer -- this may provide the opportunity to see it. Or not. And that will determine the next step. More biologics, the new Tyrosine Kinase Inhibitors that work but make you sick, more chemo...what? The data will tell.

So what's my prognosis? Who knows? Yes, liver mets are kind of a big deal -- another progression. But they aren't interfering much with my liver yet, and the Xeloda may knock those tumors down the way it does with my skin. If we find the right treatment, I might have lots more time. The doctor is confident that I'm not in danger at the moment from much of anything for at least a year. She doesn't expect a cure, as we all know, but stability is a strong possibility. Given that my cancer isn't causing many symptoms like the treatments do, I guess that's a win.

We don't know when I can return to Texas, or visit some other location. There's a long list. Much depends on the next treatment. Another hermitage may be in the works -- the side effects from the biologics and chemos that come next may be strong. I may not be up to being social -- something that I had been working to reestablish. 

We just can't plan anything! Argh!