Thursday, June 26, 2014

Lauren Ryan

I walked into the hospital room and locked eyes with Lauren. Neither of us changed the expression on our faces as I walked up to her, sat on her bed, and held her head with my hands. We stared into each others eyes with tears streaming down both of our faces. “What can I do Lauren?” I asked in vain. “You’re doing it”, she said in a soft whisper.  She wasn’t crying because she knew she was going to die soon, nor was it a result of the chronic intolerable pain that she had endured for weeks…years really. She was crying out of despair for knowing that she was going to have to leave her babies.  You can never make that ok, there are no words.

Lauren was a fighter, and as long as she had a weapon in her arsenal, she could focus on the victory dance. No matter how bad her scans were, we would work out a plausible scenario for keeping her alive long enough to try that next best drug.  She knew the odds were against her, but she could cling to the hope of being in that 8% like none other.  Lauren was such a fighter that she turned an invisible cancer into a living breathing opponent that she could actually take a swing at.  Everybody saw angiosarcoma for the first time, and all because of her.

She either didn’t fully comprehend, or was too humble to dwell on the fact that she transformed so many peoples lives. But with the help of everyone in our support group, she got it, completely, and when it mattered most. This is not the story of someone who died in obscurity only to be recognized years later for their greatness, this is the story of a legend who comprehended the magnitude of their life days before leaving this world. She smiled knowing that her babies would one day read all of the heartfelt testaments to her. She smiled because she knew that even in death, she could be a positive influence in their lives.

I held Lauren and we cried until we both smiled. We didn’t need words any more, I dried her eyes, and then I dried my own. The next morning, I blew kisses to her and she blew them right back. “I’ll see you next week my love” were my last words to her, “I love you” were her last words to me. 

We have some work to do friends, we need to finish this for her.

Tuesday, March 18, 2014

First Honeymoon

Ted and I were married across from a prison in a chapel with purple valor wall paper. Oy vey was the only phrase racing through my mind when we walked down the isle and heard what must have been the most Christian music ever composed.  Not that there's anything wrong with that, unless you're agnostic with Jewish parents who are two of the only witnesses sitting in the pews. We arrived ten minutes before the rehearsal ceremony which was ten minutes before the actual wedding. Clearly a lot of thought went in to the planning of this event. In fact, it took two calls, one to the chapel that we chose because it was on our way to our favorite rock climbing spot on the Obed River in eastern Tennessee, and the other to the hotel to reserves rooms. Ted bought me backpacking gear instead of a wedding ring. Best. Decision. Of. Our. Marriage. I still sleep warm on cold nights in the woods, take that ring lovers! We decided to put off our honeymoon, kind of like how we decided to put off planning for our wedding. At least we remembered to squeeze in the latter.
Before we had kids, we were out every weekend, doing something that could break body parts. We met at a drop zone packing parachutes if that's any indication. We swore that we wouldn't become those parents who give up their lives in order to wrap themselves  inside of a house with their sheltered babies. And to some extent we've stayed true to that. Our kids backpack, ski, and white water raft.  All without whining. Win!
Over the years, we've taken vacations and have had our share of getaways, but until last week, none of them felt like a honeymoon. We were hanging from a gondola between snow covered peaks when we decided that this was it.  "16 years in the making" Ted said to me. Putting off the honeymoon until now? Second. Best. Decision. Of. Our. Marriage.

Monday, January 6, 2014

Why I still ask for so much and all the time

I know I constantly bombard you with  requests for money. MONEY MONEY MONEY. I have a confession, I hate asking for it as much as you hate parting with it. I know that no one wakes up and decides they have too much of it. I also know it's annoying to get constant requests. In fact, I can almost guarantee that the majority of you reading this are annoyed right now, because you think I'm going to ask you for dollars at the end of this blog. I put myself in your shoes whenever I ask and think, what must it be like for them to see me drone on and on about how important it is to fuel this research. Inevitably, I come to the conclusion that you either get it completely, or you roll your eyes and ignore it.  If you are in the former group, I am indebted to you for more then just the financial contributions.  Even the tiniest donation means that you took the time to open the page (linked below), get your credit card out and hit send. A gesture like that makes me feel like you care about my mission to eradicate angiosarcoma. To me, that's huge. I can not overstate the significance that it carries. If you are in the latter group, why are you still reading this, you should be donating and restoring my faith in humanity! Please help me make this worth it folks, I have dedicated the last three years of my life to this fight, and I'm asking for your help to see it through.

Thank you!

Tuesday, December 10, 2013

What is that on our walls?

This blog is going to be focused 100% on clutter. Some history first though..
Ted was trained by the military to be clean clean SPARKLING clean. I was, am and will always be a helpless slob. Opposites attract right? Skip 15 years into the future and here we are, kids, animals, many jobs, even more hobbies, and the clutter. Next to my right hand is my phone, a pink blendypen marker with no cap, a kaleidoscope, a miniature picture of Charly that I was using to size for a locket, my sprint bill (which in and of itself deserves its own blog post), a computer screen and keyboard (there's no actual computer to connect them to), a picture of a rainbow unicorn, a tag from "new" clothes, a plastic rainbow dash and a hole puncher.
Ted and I try, honestly we do. Under this fresh smattering of clutter is a recently dusted desktop. Under the stack of books on the floor is a vacuumed area rug. We pick up all the stuff and move it to other places, but it never seems to go away. Apparently Ted has been keenly aware of this and has been patiently waiting for my awakening for years.
And it finally happened. I was walking to the bathroom and for reasons that still remain a mystery, I noticed a faded piece of pinkish construction paper taped to the wall. I walked up to inspect it, surely it was there for a reason. It must at the very least have a scribble or brandish some artifact of childhood. But it didn't. I think it was there for years. Was it there when we moved in?
I looked around and saw for the first time ever, my house. There were Christmas decorations left up from last year. Tis the season I guess. Maybe because I'm jewish I can claim that I didn't know on that one?
We began the process of decluttering. We took the taped art off the walls, we threw away bags of papers, old bills, notebooks from grad school, printed papers on topics I don't care about anymore. Although we tried, we made a tiny dent in the clutter. I want to throw it all away, I want a clean clean SPARKLING clean house! But it's getting late and I've had a long day. Maybe tomorrow....

Wednesday, October 23, 2013

For Robyn.

I asked the technician at Dana Farber if I could sip my contrast + crystal light in a little room separated from the rest of my unfortunate sippers. I didn't want them to see me fall apart while waiting for their own bad, good or stable news. Already emotionally charged as I waited for what would ultimately be good news about my own scans, I called Lauren. "She's gone" I whispered over the phone. We both sobbed, inconsolably for a length of time that doesn't have a unit of measure. Lauren was right there with Linda and me when we decided that we needed to save Robyn's life. So many people decided that we needed to save Robyn, that there really could be no alternative. It was going to be a beautiful story about how we all joined forces, doctors, families, friends, strangers, the entire world of science and a whole lot of hope, to create a bonafide miracle in order to save her. And we tried... so hard... all of us. And she tried even harder. Lauren and I wept together as we tried to process the magnitude of this loss, only to come to the conclusion that it's horrific. The end. Linda should have been here. The End. Robyn should have never been sick. THE END. In the words of her favorite doctor, "Let her rest. Such a brave girl. She is now safe with her mom. Away from this battle. Let her rest."

Sunday, October 20, 2013

Not Jaded at all

Last night I watched the Red Sox take the ALCS title away from the Tigers. Two things stood out as significant to me while watching. The first was how many times the announcers could query whether or not Pedroia's foul ball was reallllly to the left of the post and the second was the camera shot to the crowd of thousands of nail biting fans waiting to hear the ruling. It is really the latter that struck a cord with me. Countless people were caught up in the moment, sharing a collective anxiety, every heart in every human watching that game live or from the myriad of beer stained couches throughout the land was racing in unison as the referee's reviewed the shadow that the ball cast as it slipped away from a home run. 216 stitches flying through the air hit by a boy in tights. Humans desperate for the ball to shift by a couple inches. Despair as it sinks in that it was indeed foul, it wasn't an optical illusion, the ball really did cast a shadow to the left of the post. But the game went on and "we" eventually won the title. Hurrah, success, we should pat ourselves on the back. Today we all smile, we won! How comfy to be part of a collective, to know that we are uniformly striving for the same outcome, that together we will spend millions on tickets, beer, pizza and wings as we make our way to the World Series! Good job human's, it's nice to know that there can be a singular focus to galvanize us toward a victory of sorts....

Sunday, October 6, 2013

In the Nick of Time

I can usually keep it together pretty well. I am surrounded by pain and suffering and death everyday of my life, and the span of emotions that I encounter stretch my heart until it's almost flat. I've never lost my sense of humor, I cry when I want, I laugh when I want, but I'm usually in control of myself. But then Jen came in to our lives followed by Nick and ever since, my perspective on life has needed some readjustments. I've had to make room for emotions that are only on the good side of the spectrum, and as great as that sounds, it's not easy! What's so hard you might ask? Not turning into a fumbling little cry baby every time Nick lights up with a smile that starts inside of one ear and cuts right across to the other one. Seriously, his entire face is replaced by pure happiness. I also find it hard to reign in the tears when his mom starts screaming with glee as she sees them nearing the finish line. Every time she sees her son filled with so much joy, she feels it twice as deeply as he does, so you can paint the image of how big her smile is all by yourself with no help from me. Another stumbling point is watching my little girls fall in love with this experience. They get it, and I love them for that. My airborne army ranger gets misty eyed when he talks about running with Nick. Me, choking back the tears throughout it all. The span of emotions is so off kilter relative to the rest of my life, it's so infinitesimally small and condensed that it rips the tethers right off the moorings that have been steadfast in quartering me for the past three years. So there it is, possibly the hardest thing I've faced yet, happiness. I guess there's really no shame if I fail and give in to the tears, just make sure you carry some industrial strength tissues if you ever come watch them race with us!