What happened/where have I been? (Karen’s cancer)

Good question, why so few entries here, why so many on Facebook. Some of it is because Facebook is a bit artificial, just capturing moments and not really the feelings of what’s gone on, where you were, where you are, and where things are heading. Perhaps a lot of that is because the last part, where you are heading, that’s kind of scary lately. Just don’t know how things are going to turn out with my wife’s (Karen’s) cancer. Statistically she’s got about the worst you can get, metatastic Stage IV breast cancer that’s metaplastic as well. Just words, but behind those words you have something that’s not possible to attack with targeted therapies. Karen’s cancer doesn’t have receptors that you can target a payload of cancer-poison to like most. Stage IV means that it’s on the loose.

Yet there are some, many actually, who somehow have turned what she’s got into a longer-term condition, something manageable, and that’s what you pin your hopes on.

There’s also been positive progress. 3-4 weeks ago, she couldn’t get out of bed, she couldn’t speak, was constantly out of breath and coughing. She was so weak that the doctor had cancelled treatment, and without treatment, there’s no hope. The Oncologist suggested that it was a roller coaster ride, but frankly, we weren’t seeing any change in a positive direction, just a continuous downward trajectory. But then things really changed, finally for the better, when she had her visit with the pulmonary interventionist, a specialist at Kaiser’s Oakland facility. In one day, one single day, she went from barely able to walk, barely able to squeak out words, to having some color in her face again, talking like she’d been storing words up for weeks, and dramatically reduced coughing.

It’s hard to figure out where we are on the roller coaster. To me, I see her as so much better than she’d been. To her, the pain and fatigue from the nausea are things she thinks there ought to be an outright fix for, a medication not yet tried, because none of what she’s had yet has completely done the job. I wish she could see a video of what she was like just 3 or 4 weeks ago, but honestly, I have none to show, because it seemed so morbid at the time to record what seemed, back then, like it could have been her final weeks or even days.

And that’s another reason for why more Facebook posts and nothing here. Time with Karen. It’s hard to justify spending uninterrupted quality time with a computer vs with Karen. And updating my feelings, writing stuff here, that’s not something I can do “on the side.” It doesn’t take a lot of time doing this, but it does take a lot of thinking, not something you can do while also handling other things. Nobody expects, nor would they be likely to read, something long and philosophical and, well, perhaps even boring, on Facebook. Light & quick & entertaining. Updates. Photos. Yes, photos, which are so much more easily done on a phone with a camera than on a desktop computer.

A week from Monday we go back to that same specialist in Oakland, the Dr. whom, it feels like, gave Karen back her life. Karen can’t wait. Truthfully, she’s looking for another miracle, a hope that somehow, the clipping and snipping of the airways he’ll be clearing in her left lung, somehow that’s going to alter the future in a long term way. Basically surpassing the initial miracle which felt like rescuing her from something imminent and dire. I’m a bit more realistic. I’m hoping for her to stay healthy enough that treatment can continue, that she can stay alive long enough that some brilliant doctors come up with a new therapy with miraculous, favorable impact on Karen’s cancer.

Because I’m not ready for life without her. I don’t know that I ever will be, so I have got to do everything I can to not have to face that.

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