Monday, January 30, 2012

The Big Role Reversal

Mama and Me
As a good Jewish daughter, I knew that one day I would care for my mom. But we didn't expect that day to come for another 15 to 20 years (figuring by then I'd move her into an in-law unit with her own nurse wherever I lived with my future husband and children... ahhh dreams).

That all changed when we got her diagnosis last Spring and I became the single parent for my single parent. I had just reluctantly moved home out of financial necessity and it was quickly clear that it was meant to be. A mass residing in a quarter of her brain was so shocking a diagnosis and the side effects so crippling, my mom needed immediate care. At first doctors told us it was almost positively a benign tumor. Perhaps this was best to get us through the surgery. Luckily, my mom was in the best health of her life pre-surgery. A feisty tongue and a passion for Venice, Italy propelled her healing.

So... Dude, WTF?
Just as she was bouncing back from the surgery, came the bad news... the pathology results. It wasn't benign. Anaplastic Hemingiopericytoma ― a rare brain cancer. Little is known about it, which is perhaps why the doctors wouldn't admit it was cancer at first. (It's not that we wanted it to be cancer; an honest diagnosis was needed not only for trust in the doctors, but also to receive cancer support and services.) My mother was a real trooper through six weeks of daily radiation treatments. One of her biggest peeves is not being able to drive for most of the last year. The cumulative effects of the radiation persisted for many months, but my mom was just starting to feel better.

We were going to see a new oncologist (aka cancer doctor) to try to get some straightforward answers when she started acting funny. It was a nightmare trying to convince the doctors something was wrong. It turned out to be a small ischemic stroke next to where the tumor was removed and it caused seizure disorder and hallucinations. For several very long days, I wondered if my mom would ever come back to me. I am thankful for the support and prayers of our friends and family who receive our online caring community updates (we use LotsaHelpingHands.com). My strong-willed, sweet little Jewish mother came through and we now talk about when she woke up ― her brain frantically trying to piece together reality with lingering and remembered hallucinations. I'm just glad she recognizes me again.

Mama and Me at the end of a relaxing vacation a few years ago
Healing is a slow process; something we must continually remind ourselves. My mom is considerably better than she was in the hospital, but she still needs a lot of home care. So we are once again forging the big role reversal. It is not an easy job physically or emotionally, but there's no question of caring for my mother. We've always been close. She raised me as a single mother back when single parenting was lacking in couth. We've conquered great challenges and enjoyed wonderful adventures together with all the inside jokes and finished sentences to remember. And now I am more than just her daughter; I am my mother's caregiver, her patient advocate and care coordinator. And I look forward to the role reversal dance continuing on to more joyful adventures.

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