Wednesday, July 27, 2011

"Do you still love me?", and other (more difficult) questions...

Meagan has always had a propensity to ask piercing and incisive questions. She reads me like a book, and she reads books well. So my answers need to be damn good, or else I'm in big trouble.

In the past, since the discovery of the brain tumors and the stroke, she has asked tough questions such as, "am I going to make it?". There were periods of time where my answer had to be positive (even though I wasn't sure) because that was what she needed to hear - she needed the hope to keep going because she wasn't mentally ready for the more accurate answer ("probably not"). So it was a sort of kindness on my part to bend the truth, because the goal was to keep her positive and motivated. It wasn't to have a completely open and candid relationship as a couple - because the roles had changed and my job as cabana boy and spouse was to care for her. We also had at that time, some clinical trial options that had some very low percentage of success (success defined as complete remission rather than life extension of some duration). So I could point to those as reasons for my response.

After her seizures and the closing off of the clinical trial options, and the concern by Kaplan over the neurological issues associated with any attempt to use aggressive immune system treatments  - information she was made aware of  - it became more appropriate to lead her into the deeper water and give her the more accurate answer. At that point it was information she was better able to deal with, even though it comes with a measure of grief.

As time has rolled on, and she has experienced the side effects of treatment (the radiation of the brain, anti-seizure medications, chemotherapy), there have been some other questions. Not too long ago it was, "am I losing my mind?". Well, there is no question she is suffering from cognitive deficits. Some are long term and not going to return, like the numbers and dates and time capacity. Others, like her short term memory are more problematic. They have waxed and waned, lately more waxed. It could be the Temodar (chemo) kicking in, it could be delayed onset of the radiation as the healthy brain tissue in the margin area they got dies off, or it could be the medications in general. My response though was swift and sure as it needed to be and as is justified by the facts - "no, you are not losing your mind". I remind her of the brain's ability to rewire itself, remind her of the likely short term nature of the effects, and then remind her of all the aspects of her brain which are unaffected, such as her personality, her ability to have conversation, her capacity for empathy and love, and all the qualities of the mind she has which have endeared her to so many. Her inability to write beautifully is a pain in the ass and frustrates her, but I keep reassuring her it will return in time with practice as her brain re-learns. Of course she is still sharp enough to retort that she hopes it happens before she kicks the bucket (evidence of her capacity to think and warped sense of humor).

Yesterday she hit me between the eyes with two questions, one easy and one hard. The easy one was, "do you still love me". Of course I do, and I told her about the depth and breadth of my love for her and how that was a foundation unshaken by the events. The next question was a doozy. "Do you love me more than just as a wife?". I think what she was getting at here were reassurances she needed over things like appearance and attractiveness and the quality of the relationship that make a scintillating partnership.

She is obviously distraught over a lot of the physical changes. Notwithstanding "Audrey", her smashing new wig, underneath she has lost a lot of hair from the radiation. She's patchy and bald in places, along with the rest of her hair which is a buzz cut. Whether that is permanent or not is unknown.  But women (and men) care about hair loss, and it is a self-perceived measure of her physical attractiveness. She has also put on some weight - some of it steroid driven, some of it because of her need after the stroke to eat high salt and fat foods - to prepare for what we thought would be a next difficult treatment. Her weight for 25 years has been around 103 pounds; she came out of the hospital weighing 93 pounds, and now at 111 pounds she is in treatment fighting condition and hardly overweight. But she notices the differences, has had to buy some new clothes which fit, and is not at all happy about the padding on her face. She has also had a lot of surgeries and has the scars to prove it; appearance altering badges of honor but she does see them. Lastly, as what one of our friend's terms her capacity for "aerobic worrying", she wants to still measure up as a good partner, one who can be interested and interesting, one who gives as much as she gets. And is still viewed as a hot mama by her beloved.

I'm no saint. Our relationship has changed. I am the caregiver and that definitely changes the relationship. It creates an imbalance in the relationship that isn't easily overcome, especially with cognitive deficits. In normal situations that is a temporary condition  - but when you are dealing with a stroke victim, it can be forever. Especially in her case, with the medications she needs and the likelihood that forever isn't that long. And then in responding to the question, it goes back to earlier days, what is the answer she needs to hear and what would be a kindness and reassure her, especially given where she is in terms of emotional swings and fears of impending death and worries about her boys and just making it through each day and week ahead?

In so many ways my love has deepened and I told her that - her ability to cope with this disease with grace and style, her continuing ability to reach out and care for others and express her love, and her desire and ability to create meaning and joy in her life notwithstanding the prognosis. She has exhibited remarkable qualities and those are ones that make me love her more than just as a wife. But I kinda, sorta side-stepped the underlying real question and thankfully she didn't pursue it. I do think I will be spending more time talking about and reminding her of the good times we have had as a couple when we weren't in parenting mode or crisis or caretaker mode. Reminding her about why I have loved her as more than "just a wife". And continue to do so, although internally it's for different reasons.

Just another example of how cancer affects more than just the person with the disease...

1 comment:

  1. This is honest and heartbreaking. As I read your post I'm taking back to the moments that those similar questions were asked of me. When he would look in the mirror and say his head looked like a bobble head because he was so swollen from the massive steroids. Just by reading this post, I can feel the love you have for your wife. We have a lot in common... I will be praying for you both. Jill Sizemore (wife of Eric - Stage 4 Melanoma)