Saturday, June 18, 2011

A Tough Day Emotionally

While there were some very enjoyable times for Meagan yesterday, there were also some considerable lows. The cancer books don't tell you too much about how to deal with these situations so you have to make it up as you go along, trust your instinct and hope like hell your response is helpful.

I used to think the two hardest general questions were:  "what is the meaning of life?";  and, "what is my purpose?".  Tolstoy, in his book The Three Questions, had it like this: When is the best time to do things? Who is the most important one? What is the right thing to do?".

Boy, was I wrong, and so was Tolstoy. I heard the two hardest questions yesterday,

"Is there any hope for me?"

"When can I be your partner again and not your charge?" Typically followed by, "do you still love me?".

Usually questions like these come from left field, so I am not fully prepared intellectually or emotionally to address them. I do think my instincts are pretty good, so my first reaction is to simply hold her, because an immediate answer is not aways required. The questions are clearly asked out of fear and insecurity and sometimes the best answer is to provide the comfort of being there and holding her to assure her she is not alone in this battle.

I hope you all know what my answers are. It's not necessarily the words that are important though, but the conviction and sincerity with which you say them. It's especially challenging when she is fragile due to her medication - no fault of hers at all. The easiest one to answer is the "do you still love me?" question. That requires a quick, certain, sure, forceful response. Along with a reassuring long hug. 

"Is there any hope for me?" is a little tougher - not because of my response ("of course there is hope") but because of the cognitive dissonance within me. If I answered, "I don't know", which is probably more along the lines of what I actually think (given what I know about this disease and it's typical progression and the best drug developed in decades for the disease which didn't work for her, and the metastasis to the brain), it would generate a response which, suffice to say, would not be all that helpful. So sometimes one answers with a response based not on what you might think, but what that person needs to hear - to keep them going, positive, hopeful and able to cope. That's when your role as a caregiver kicks in - to provide emotional support and not necessarily answer the question asked.

The other one is tougher. My response is that this is just a phase and our normal balance will be restored. The job of any partner is to support their significant other in sickness and in health - right? I tend to focus on the technical aspects - the medication schedule and tapering which will improve her cognitive ability, at least to post-stroke condition. And reassure her that notwithstanding the caregiving aspect, she is my partner and does provide me reciprocal benefits. I know she is frustrated at not being able to care for me or do the things that a partner does, and is trying to find ways to do it to the best of her abilities, such as making a list of all the movies we need to see this summer. But the reality of the situation does make it a tough question. It's been a year now since her first diagnosis of malignant cancer and ten months since her diagnosis of metastatic melanoma. And it has been a downhill slide the whole time (physically and cognitively), with no real end in sight. And the situations keep getting more and more severe. It's one thing to take her to a scheduled partial mastectomy, it's quite another to rush her to emergency and have her undergo brain surgery and come out with a loss of function. Our non-emergency days become focused on medication schedule and ensuring she gets them, future medical appointments, discussing scenarios (when is my next treatment and what is it), being her social secretary (although she is slowly trying to take that back), and making sure she is safe and cared for. And that does change the nature of the relationship. And I'm not sure it's really temporary. 

So this is another instance where you put the best interest of the questioner at heart. It's the right thing to do. But it's not the most satisfying answer internally and it raises more questions internally. While the advice I give her pretty consistently about the disease in general is sound (focus on one treatment at a time, live in the moment, enjoy life for what it offers today) - it's not always advice I can practice myself. So in the wee hours, I do spend a lot of time wondering where this all goes.

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