Wednesday, August 17, 2011

The Back Story...

A double entendre...

This has been a particularly troubling last 5 days. Physically as well as emotionally. To recap, a week ago Monday, Meagan complained of some pain in her lower tailbone area. We got in to see Kaplan right away, and while he couldn't feel anything in the indicated area, he recommended a CT scan and bone scan. So the CT scan was scheduled for Thursday morning (11th) and the bone scan for following Monday morning (15th). Obviously the concern was spread of tumors, since we know that the disease has been essentially unchecked and we have been fighting the main battle up in her brain. To top it all off, on Friday (12th) she underwent Gamma knife radiation treatment for her two discovered brain tumors.

She had the CT scan on Thursday the 11th and we got a call from Kaplan that night. First he talked to me - and told me two things - tumors in the tailbone area causing pain, and treatable with radiation; and tumors in spinal column, untreatable. Then he asked the phone be passed to Meagan. I guess he wanted me to be sure I got the clear message, since we both are aware of Meagan's cognitive challenges. She talked to him for quite a while. After hanging up, she described the presence of tumors near the tailbone and how those could be treated with radiation, but said nothing about the tumors on her spinal column. Now this was pretty late, for us, and at that point I made the decision not to press the issue about what else he might have said to her. This is one of those cabana boy tough calls - balancing kindness and comfort with clarity and precision. I have also been in this position before where her recall has been different than my recall of a conversation even when we are in the same room and I usually lose out on those because even if I'm right, I'm wrong. Because precision doesn't really lead to anything but grief and sadness and doesn't change the overall outlook. Knowing she had a tough day ahead of her with the Gamma knife treatment the next day was a factor as well. So I held my tongue and we went to bed.

The next day was pretty much consumed with the Gamma knife and she had some Avastan which made her sleepy and out of it. So between the procedure and downtime when she napped there was no time to talk and when we got home she napped most of the afternoon. Of course I was busily googling about metastatic tumors of the spinal column. On Friday afternoon I also informed the boys as I had previously committed to them to not withhold information from them, even if it was withheld from Meagan. They also agreed not to tell her about the spinal tumors.

It wasn't until Saturday that we had a chance to talk more about the overall situation and the new news about the tumors discovered on the CT scan. In an oblique way I asked her what she remembered about her conversation with Kaplan and she confessed to not remembering much. It was throughout the day that we also realized she was indeed having side effects from the Gamma knife radiation treatment (fuzziness, memory issues, speech difficulty, a little physical instability). So I spent most of the day caring for her and sitting on the horns of a dilemma - do I tell her what I heard from Kaplan or not. Is blissful ignorance better (knowing the truth will come out on Tuesday) than knowing the "facts". If I tell her, it becomes a situation of "he said, she heard" - and I didn't have any information about where the tumors were or impact or anything - because the call with Kaplan had been brief and we were seeing him Tuesday. So I emailed Kaplan and said essentially, she didn't get the same message  you told me, but I am not pressing the point and will leave it to you to give her the full story in person, He got back to me quickly (this is Saturday remember) and said he has fine with that.

Well, my intuitive wife must have sensed there was something else going on. Because when we went to bed Saturday night she asked me if there was something else Kaplan had told me that she was not aware of. Gulp. So I told her. You can well imagine the reaction. I really had nothing to add to help her process it  - other than to indicate that to me untreatable was a big difference between treatable. But that we would have to wait until we saw Kaplan to understand what it meant.

So for the next two days, Sunday and Monday, Meagan sort of leapt to the conclusion that her days were numbered, life was short and that she better get busy. These were highly emotional days. I did email Kaplan and told him that Meagan now knew what I knew and that he should be prepared and he acknowledged that. So we walked into the appointment yesterday (Tuesday) expecting not just bad news, but terrible news.

As I outlined in my post of yesterday, the message in person was a little different. The facts were not different - the existence of the spinal tumors is undisputed. The extent of the spread was greater than I imagined. But his suggestion that he still had some treatment options was a different message than he told me over the phone (surprise!) and offered a ray of hope to Meagan, something she desperately wants. The hope is that she has more time than expected (these tumors don't cause imminent death) and there at least some treatments to try (versus none). So she walked out of there with a palpable sense of relief.

The problem (or one of the many problems) is that this swing in emotions from utter hopelessness and fear of imminent demise to one of a sliver of hope and thinking you have a bit more time is extreme. And that swing is almost paralyzing. She was in a daze most of the rest of the day - almost a state of shock. She couldn't think straight and was near tears. It was literally all she could do to just sit there and eat and eventually take a bath and then fall asleep. For her, an emotional person already, this kind of extreme volatility of emotions, is overwhelming. And that is why we concluded, in those times we could talk yesterday, that the setting of expectations about timeframes, progression, outcomes is just not productive. It's likely to be wrong, this disease is a moving target with little certainty of intermediate steps (even though she knows that in the long term it's going to get her) and therefore it's better to set no expectations than be run through the emotional wringer when the outcome is different one way or the other.

Of course I second guess myself. Should I have lied to her on Saturday night? If I had, she would have had two good days and the meeting with Kaplan as it turned out would have been ok. But I didn't know he was going to give her different information that he gave me. So if he had told her what he told me, would it have been better to have her prepared?

This whole scenario is another reason this job completely sucks.

But I have to buckle up the straps and be prepared to support her for another day. She has a 4:45pm MRI appointment today that will take about 4 hours - detailed looks at her spinal column in preparation for the Cyberknife treatment of the tumors near the base of her spine. My understanding is the tumors in her spinal column in the epidural space are not treatable with radiation. So we do have to wait to treat those via Kaplan- and a lot can happen to them in the 2-3 months we are waiting. And whether the possible treatments will have any effect is probably low - but it's not nothing.

At least it's sunny out...

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