Tuesday, October 27, 2009

My Lighthouse.

Lily is eight months today. She changes hourly so my arrival home from work cannot come soon enough. Thankfully she called me yesterday afternoon, to pull me through the rest of the day. She panted, screeched and giggled - I could just see her happy drool, squinted eyes and crinkled nose. I could picture her attempt to chew on the phone. She is amusingly animated and though she has no vocabulary, yet, she is an exuberant, loud, communicator. As difficult as it has been to miss her during the days, she is the most wonderful little person, truly my guiding light - and it is she that makes time away that much more rewarding when I'm home. Nearly crawling, she takes pleasure in banging objects together, enjoys dropping things from elevated levels, is charmingly vain in front of a mirror and possesses an overall happy spirit. She was sick for the first time last week with a fever that has since grown into a cold and despite her congestion she is energetic and excited by all that surrounds her. I suspect that she caught her bug from Barnes & Noble - a wonderful indoor playground but a petri dish as well. We went there on a rainy weekend and stalked other children. Lily does love a good board book but she is drawn to other kids and cannot contain herself at the sight of another child. She is an extrovert around children under seven, curious, chatty and engaging. So instead of reading "Go Dog Go" she chose to hit on a Cheerio eating boy named Max near the SAT prep books. She also shook hands with two young boys and had a staring contest with a girl who said she was two, three, four years old. It was a grand social hour, and I guess we brought some of it home with us. Hopefully her congestion will dissipate, enough so that she need not come up gasping for air after every four gulps while nursing. Poor thing needs a snorkle. Maybe tomorrow will be a dryer day. Regardless, her disposition remains sunny.

Alan said to me at our wedding that I carried him, through the days, and as I struggle to adjust to this step back into the working world it is Lily that carries me. Holding her in my arms has almost curative powers. When she gently contemplates the rings that dangle from a necklace that Alan gave to me, I sense that she is aware of him - there is a peacefulness that comes over her as she examines them and with that, what feels like his awareness of us, washes over me.

Sunday, October 25, 2009

Search for a cure.

I actually read the front page of the paper today, drawn to it because of an article on MD Anderson - a mecca of sorts for cancer patients. Part of me was excited to read it, to learn of it's hopeful research and treatment, and part of me was fearful I'd learn of something experimental for hemangiopericytoma's that we had missed out on. In our research we heard mention of MD Anderson when we pressed for places that might have something experimental that was promising and while we wanted no one else to be plagued with the same disease, when it comes to a rare cancer, misery loves company - only for the simple reason that with disease, numbers mean funding and research. We knew MD Anderson had multiple cases of hemangiopericytoma (He - man - geo - peri - cy - toma) and that alone made it an alluring destination for a fresh set of eyes and ideas. But it wasn't an option. We had phoned them, I had a list of all of the reports and scans needed, but you cannot go unless you're a certain number of months between treatments and you cannot go while on any sort of regimen. The most excruciating aspect of the actual fight against cancer is the obvious: Time. And when you're fighting for your life, the thought of refusing treatment in order to attempt something else further down the line is a gamble with death. Pure and simple. I had spoken to the NIH, had information on trials, we went to Dana Farber in Boston for an opinion and MD Anderson was on my wish-list. Forget about the question of what you'll do about work, where you'll live or how you'll go back and forth to Houston, the concept of what might be there was worth it. The article was inspiring because it's entirely devoted to all things cancer, and they are at the forefront of critical research. It was also devastating because it acknowledges that there is yet no cure and positive results often mean extending one's life by months.

I was desperate to find a cure for Alan's illness. I would have gone to the ends of the earth to stop it's progression. And that is another struggle - you become obsessed with research and the quest for an answer and it occupies every sleeping and waking moment. Just the other day I used a purse I hadn't used in over a year and on a piece of scrap paper inside, was the name of a drug. Obviously I had read about it somewhere and written it down - the kind of note taking that becomes second nature when you're searching for any port in storm. When I came across it for a moment I worried I had neglected to look it up, to find out about it's potential for Alan - but I let it go, trusting that had it been an option, it would have been explored. Whether Alan would have benefited in Texas or not, I'll never know. Thankfully, what I do know, is that doctors talk. They exchange notes, share findings, and gather at conferences - Alan had excellent doctors thinking out of the box so I have to rest assured that no stone went unturned. We ended up at MSK because we were told that there was technology there that he needed that Columbia Presbyterian did not yet have. It took a selfless doctor to admit that, but thankfully, he did. Sadly bureaucracy and funding can limit even the finest hospitals.

I remember Alan cracking a joke during a visit to the radiation oncologist, having to do with Ted Kennedy being able to sail and live largely while top doctors scrambled to provide him with ground-breaking therapies. As it happened, they both ended up on the same chemo, and the Senator's prognosis (though a different tumor) wasn't any gentler. But it is exhausting navigating an uneven and poorly run health care system, insulting to consider that money or lack thereof could influence the length of one's life, and bottom-line, unfair. Health care is discriminating and Alan had strong opinions about it. He was furious at one point when we decided to move him to a private room because the nursing care was so poor on his floor - he felt it was unfair that he had that option. And yet he also felt it was fair for doctors and hospitals to charge what they did - the system had to pay for itself. But even with excellent insurance, Alan was cheated many times. He was repeatedly denied scans when he desperately needed them, hospital stays had to be fought for and when he did get scans the angst that went into getting them approved added insult to injury. Most of the time I was the one showing desperation, not Alan. He was the one with the sentence but it was I who openly and frantically sought the answers. He showed up to every treatment, surgery, scan and follow-up, he went to work and came home and loved and lived and did it all over the next day. That's the most admirable fight I can think of. So when I read of the patient who has shown up for sixteen, week-long stays within a nine month period, on the front page, my heart is glad she's getting some recognition from others beside her family and friends. And I hope she has years ahead of her.

Saturday, October 17, 2009

Moving Forward.

I am going back to work. For the first time in over a year, I'll be rejoining the masses heading to a daily destination, and leaving Lily at home in the hands of a doting grandmother and a nanny who loves her. Despite the watchful eyes on Lily I miss her already and have my own set of anxieties surrounding my return to the position I held for many years until Alan passed away. It will be the same room, same desk, and I will be facing the same photo from our wedding of Alan and me together with my employers, arm in arm, on the happiest day of my life. I know from the occasional part-time days I worked during my pregnancy that the phone will ring and I'll jump inside, thinking for a split second that it's Alan on the other end. My Alan. That was the routine - my employers are also Susan and Alan - so when my Alan called and I couldn't get to the phone in time, my employer would. And I can just hear her calling me from the other room, "It's Alan! Your Alan...". I can hear his deep, rich, soft voice in my mind, "Hi Sus" he'd say, and then he'd maybe suggest getting theater tickets for a show we'd read about, or fill me in on his office's politics or have an idea about where we could meet for drinks or dinner after work. Or perhaps he was planning on cooking that night or he'd fill me in on a doctors appointment. Sometimes it was just to check in. How I miss his reassuring voice and his level headed perspective, his calm balance to my dramatic inclinations. His warmth always brought a smile to my face and my employer never missed telling me that he had called if I had been out. She knew how important he was to me, and there were also many hours spent, waiting to hear back from him if he'd gone to treatment without me. I was, and still am, a worrier, so if too much time lapsed between appointments or calls my heart would race until I heard from him. And there were plenty of calls when I could hear in his voice that something wasn't right - a headache too strong, a dizziness, or a sharp pain - and though he'd play it down, I'd rush home, knowing that in a few hours most likely we'd be in the ER. It wasn't a regular occurrence, but each and every visit was one too many.

I'm getting better at catching myself in those brief moments - whether it's a phone ringing or a silhouette in a window. But the fantasy still remains. Just yesterday I had a daydream where I envisioned telling my Super that Alan was back. Explaining to him that there had been some mistake and that Alan was still here, and he had returned, and he too agreed that there was something wrong with the radiator. It was a fleeting thought, but a wish that resonates. The heat is now back on, with the usual photos of Alan and us arranged lovingly on top.

A woman I spoke to one early morning at the swings said she thought it was harder for the mom who's been with her child for seven or eight months to return to work, than for the mom who's time is up at the typical three months - the thought being that at the seven month mark you've been watching your baby develop and discover and grow in tangible ways. They're well beyond the baby "lump stage" and are evolving before your eyes - so the child you must now leave seems more human, and the connection deeper. And I understand that thought - because every day Lily is closer to crawling, her balance is less off kilter, her mannerisms more calculating. She is waving, feeding herself little Os, chugging from a sippy cup, and connecting mental dots. She knows that cups hold water, Spot isn't in the closet or under the bed - he's in the basket, that people come through the door, that music is fun to move to. She talks to her animals and knows that when she makes noise, she is heard. I find that when I'm not with her and I hear a baby cry, for a second it sounds like Lily. Once again someone is on my mind 24/7, and I'll have to go for hours without seeing her. Most moms do it, and I'm sure - I know - it's no easier for them. Makes me long for Italian hours - long lunches at home and siesta. How nice that would be. But I know I'll handle it, Lily makes everything worthwhile - and when I sit down at my desk next week I'll place her photo right next to the others and look forward to our twilight hour together, before she goes down to bed.