Sunday, July 18, 2010

Live from Cancer-ville

Mom's diagnosis is the same. I appreciate that the doctors were so blunt with the worst-case-scenario from the outset of all of this. Stage IV lung cancer that has metastasized in the brain. Some doctor in the future will ask me about my family medical history for my medical record, and this will be my answer for how my mother died. That is awful to contemplate, so I don't. Not really.

She's started chemotherapy, though I'm not entirely sure that she really wanted it. I think Mom always knew that her endgame would go this way, and to prepare, she told each of her seven children -- in separate, one-on-one conversations -- that if she were ever diagnosed with a terminal illness, she wouldn't fight it with aggressive treatments. She said she'd just give into it and live the rest of her days as comfortably as possible.

Yet in our family meeting she said, "Let's do it," when asked if she wanted to undergo a round of chemotherapy. A family meeting, for the uninitiated, is an awful, medical all-cards-on-the-table meeting wherein the doctors inform loved ones, in the presence of the person who is ill, what the treatment options and recommendations are. I call it awful because it has all the hallmarks of a business meeting -- agenda, packets of information, next steps -- but the meeting is about your mother's life. So you hear numbers, percentages and time frames and things like that, but it's not about whether your company is in the black. It's about whether your Mom is going to make it to her next birthday.

But you can have an idea of how you want to handle these things and change your mind about it, right? When you're prepping to have a baby they tell you that you shouldn't firmly decide whether or not to have an epidural because you can't really know for sure how you'll feel when you're in the thick of labor. So I have to think this is true when battling cancer.

I suppose I'm mixed up about this because the lesions in Mom's brain are causing disorientation, forgetfulness, and things like that. So, for lack of a better way to put it, I don't know if Mom's agreement to undergo chemotherapy is HER decision, or the lesions'. I don't know that someone should be included on her medical decisions when she sometimes thinks it's 2003 and she's in the hospital for a heart attack.

Guess that's all water under the bridge, though, because she's completed her first round of chemotherapy.

Since she's done with that, she was discharged from the hospital. They were recommending that she go to an inpatient physical therapy rehab center. The Army of Brain Lesions have caused weakness and a lack of coordination, which caused her to fall at the house in the middle of the night last Monday, which in resulted in a banged-up knee that swelled to the size of a volleyball. All of this adds up to need to learn how to work the body she's got right now. But, Mom was desperate to come home, and Dad is desperate to do right by her and follow her wishes as best he can, so they selected an alternate option that the hospital outlined: discharge Mom to home care, and send a nurse and a physical therapist to her home three times per week, for an hour at a time.

This has my siblings and me very, very worried. My father is not capable of doing this on his own, and we of course want to help, but I don't know if we have the facility for this kind of thing. He has a decent chunk of change saved up, but I'm not sure if he can afford long-term 24/7 care, which, frankly, is the only thing that would ease my mind and would also satisfy my mother's desire to be home.

Today, we have another family meeting among the kids to divvy up responsibilities -- helping my father, getting Mom to-and-from appointments, making sure the prescriptions get filled, and things like that. I feel incredibly, outrageously lucky to have family -- my brothers, their wives, my sisters, my brother-in-law -- who can help with this kind of thing.  They are all such wonderful people, all with the best hearts.I appreciate this beyond all measure, really. 

I also feel very lucky to be geographically close to my mother. One of my sisters lives abroad, and it's crushing her soul not to be able to be here to see Mom, help her, talk to her. I recognize that our situation is better than most in terms of time, and money, and support. Cold comfort. It all still sucks though. A lot.

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