The Odd Space Between

What a strange trip it’s been. The last three weeks have been a  recovery of sorts – from the flu and what I am going to attribute as a general freak out due to unrealized angst over the last year compounded by an adverse reaction to tamiflu. In some ways I feel that the dark place I visited was worse than when I had cancer – it was the realization of all that had gone, and how it was going to continue to echo into the future.

We have gone on a belt tightening regime. Happily, our last payment to preschool was processed this week. Our children were accepted into a Mandarin Chinese Immersion program at their public school in what we hope will be an amazing academic and cultural opportunity to make their little brains spongy and their neurons fire and connect. It certainly helps that we see it as a private school education at public school prices. But, one of my biggest challenges in facing that path was the recognition that I would need to be well enough to (a) manage what will be an entirely new educational experience and system for our family (b) ask that the children be willing to spend some time every day academically and (c) commit to learning basic Mandarin so that my children don’t talk in secret circles in front of me.

I don’t know I even admitted it to myself until late last week but it was fear that was influencing my decision on behalf of the children. It was fear that I wouldn’t be able to handle it – that I didn’t know our path and fear of returning to the survival mode of the last year.

It is ironic, then, that I return to surgery in just two weeks. After addressing the fear, after realizing the repercussions of cancer will effect us physically, emotionally, and financially for years, I go back into that scary world of surgeries, hospitals and procedures.

As I am literally flat, I will have expanders put in that will be pumped up over a series of months to stretch my skin. Here my youth will come in handy I hope and make the pain less. Once we have achieved desired fullness, swap out, detailing, and off I go into the future.

This time, right now, I prepare for a trip to Duke to talk about my journey and their programs. I have been asked by the Breast Cancer Resource Center to be featured at the Art Bra event to help them raise money so I prepare that script. )I finished my owl bra entry to raise money – Hooter is below). I get ready to leave the family for my trip to Durham, I cook and clean and work and plan. But there is much I cannot do because of the looming changes.

I have continued on my healthy habits – green smoothie each day, exercising three times a week at least, lots of water, less caffeine. But I can’t ratchet things up (tennis anyone?) because of what will come. I can’t buy new clothes – with the spending freeze actually not a bad thing – because I have no idea what size I will be when this all sorts. I work par ttime for an extraordinary group but know that I will be out of pocket for a couple of weeks and then with questions on my return – how much? how soon?

Oh and I turn 37 in the middle of it all. As the children have pointed out with their glee at learning new math terms – I will go from being even to odd. I feel quite a bit odd already.

Reflections During the Flu

It’s been a very introspective week. I blame my lack of activity due to the thorough drubbing the flu gave our family. I also will blame tamiflu which has listed as one of its side effects: anxiety. And, I will blame myself for fighting so hard to get back to the new normal that I didn’t give myself time to process and heal.

I finally worked myself up to researching the market for a memoir – after having written a few chapters. I typed in breast cancer memoir at amazon and got thousands of responses. The sad thing is, my story is not unique. My story is compelling but there are others even more so – the woman who emigrated from Liberia with one son only to discover she had breast cancer. The orthodox jew who struggled with her religious beliefs even as she struggled through rounds of chemo and surgery with young children.

On the one hand, it’s comforting to know I’m not alone – but I’ve always known that. On the other, my dreams of a Julie and Julia moment got a lot harder to reach. I even talked with a  publisher on Friday. He likes me, likes my writing, but basically said I need an angle – something to make 15,000 people want to buy my book, my reflections. His comment – unless you’re famous bookstores won’t even buy memoirs at all.

Which leaves me with a sigh of relief . The pressure to do something so big that it triumphed this last year’s adversity has been a pressure I have felt throughout. I know I have not been idle. I know I can publish a book. But until I decide what I want to say and how I want to say it, I can focus back on what matters: my family, my self.

To that end, I have now had three straight days of green smoothies – I have discovered that banana and kale and a little juice makes a banana smoothie that happens to be green. Even the kids drank it. I have been sleeping like a rock – and no longer have such a crash in the afternoons (but maybe that’s because I stopped drinking 23 Diet Cokes a day).

But, there is still a knot of anxiety. Will it be enough to help me on my journey to getting well? And what happens when I have my surgery in April? How will that effect my recovery?

I had a friend tell me recently that when we are confronted with a new reality it’s almost like we have to build a new way for our mind to handle it. Like a filing cabinet. When confronted with a new issue – oh, we have to decide on summer camps, it gets a file. But when confronted by cancer, the after effects, the finances, you get a whole new filing system. I now have tabs for health/wellness, family, finances, oh-god-will-it-come-back, and the good things that came out of this.

Each day I work to put my thoughts into their space and some days I do it better than others.

Cancer Doesn’t Make Cents (Only Dollars)

I’ve already crossed lots of thresholds and boundaries here – talking openly about bodily functions, losing hair, gaining and losing weight … gaining and losing body parts. Now another taboo will fall: finances.

I am motivated in part by an article I just read in Time magazine – their Special Report on the Bitter Pill of Health Care Costs. It went into nauseating detail on five different individuals and their financial travails in the health care system. Three of them had cancer.

When I first started the article, it talked about a man who was diagnosed at age 42 with non-Hodgkins lymphoma … and proceeded to MD Anderson to get the best and brightest treatment. I felt a sense of thrill – MD Anderson, part of UT, highlighted nationally for its cancer care. But then I realized this was no warm and fuzzy piece, it was an expose.

This gentleman was made to wait in the hospital while his check cleared as prepayment for the treatment he would receive. Over $90,000 of treatment. The article only got worse.

He and his wife were considered “under insured” – they owned their own business and therefore had some health care coverage but not much, and certainly not enough. In the article they also follow people with no health care coverage, or with Medicare – 60% of all personal bankruptcies in the US are health care related. But, lest you think that you are immune, let me tell you our story.

When we were headed to Dubai, I quit working. Davis has excellent health care coverage through IBM. We pay about $500 per month for coverage. We have a $10,000 per person out of pocket maximum and a $750,000 per person lifetime maximum. I am now pushing halfway on that. (Obamacare will make all insurance companies have no limit which in turn will drive all health care costs up BUT I’m not complaining about that … yet)

From February 13, 2012 – December 31, 2012 Aetna was billed $198,000 for my treatment. They paid $62,000 because of negotiated discounts. My claim statement (not the individual bills) includes almost 200 individual line items. One night with my surgery was billed $25K, outpatient surgery for my portacath was $12K, radiation treatments were billed at about $1500 per appointment for 30 appointments.

We blew past our out of pocket maximum in July. I just completed a deduction table for our 2012 taxes and we spent almost $19,000 on prescriptions, doctor’s visits, etc. So the good news is we will likely get a refund this year. But, think about it – we lost my salary for a full year, had to double up on nanny help, and paid that giant bill out of pocket. What do people do when they don’t have good insurance? When they don’t have friends and family and a nest egg for emergencies?

This also means that for the $500 we pay each month, Aetna actually was worth about $15K per month in 2012. That is a bargain at any price, and literally worth 20 years of the premiums for Davis at IBM. Crazy.