Tuesday, August 16, 2011

How is it that bad news is good news?

when it is better than the terrible news you were expecting.

Frankly, what Meagan expected going into today's visit with Dr. Kaplan was that she would have untreatable cancer in the spinal column and that her life expectancy was greatly diminished. We based this in part on the call we got last Thursday night from Dr. Kaplan giving us the preliminary results of the CT scan. He told me then, small tumors at the base of the spine - treatable with radiation, and tumors in her spinal column - untreatable.

When we got there today, his tune was a little different. Yes, there are small tumors at the base of her spine, thus causing the pain. We are heading to Swedish Radiology and they will be doing a Cyberknife radiation treatment of those. She has a detailed MRI tomorrow and then the "zappage" will follow. The hope is the radiation treatment shrinks the tumors and the pain goes away. That part we expected.

The part that is different is the identified tumors on her spinal column. Yes, those exist. They are distributed up and down the column in the epidural space. But they are not untreatable. Kaplan said he has a few other tools in the toolkit he can employ - in time. They are different chemo regimes that are direct infusions into the spinal column. But that can't happen until her brain calms down from her most recent brain radiation treatment, which was last Friday. The wait interval is 2-3 months. So for now, we watch and wait. And hope that the current chemo she is on, Temodar, has some effect. He also said those spinal tumors would not cause anything imminent. So that was a huge relief for Meagan. For two reasons. One, it gives her more time. Two, at least having some tools that can be tried is better than being able to do nothing.

What we learned is that it is really bad to have any expectations or to make predictions - especially about timelines. We don't know how the disease will continue to progress and present, and Kaplan would not and could not give us any indication of what might happen in the spinal column and when. The emotional roller coaster of having one set of expectations and then have a different outcome (even though positive) is completely draining. So after the meeting we agreed the most sane way to proceed - is to live it day to day, deal with the symptoms and treatments as they emerge, and don't get into predictions, prognoses or timelines. It isn't helpful and can be downright debilitating.

No comments:

Post a Comment