Saturday, March 31, 2012

The Day After

*Just want to warn you upfront that this post is rather littered with the f-word. Sorry, but as I’ve said before, sometimes it is the only word that works. This is most definitely one of those times. This post is also garbled, much like my mind right now.

First of all, thank you. Thank you so much. A million times over, thank you. One of the reasons I wanted to just go ahead and share our news, no matter how new or raw it might be, is that I knew that the “bucking-up brigade” (Downton Abbey fans out there?) would be right there, ready and waiting to start the bucking up. Because despite the purposely positive tone of yesterday’s post, I definitely needed, and need, and will need for a really long time, some bucking up. Make no mistake: I am scared. I am confused. I am angry (although I think I was a lot angrier at the guy who honked (and yelled!) at me in the hospital parking lot this morning because he thought I was going to hit his precious M6 convertible while I was backing into my space. I was nowhere near him. I so wanted to get out and scream into his window, “I got diagnosed with cancer yesterday. What’s your fucking excuse?!” I really wanted to key his car when I got back and he wasn’t in it anymore. Maybe my anger was a tad misdirected.). I needed the bucking up. Big time. And you all came through, big time. Thank you. Thank you. Thank you. 

Scared, confused, angry, yes. But right now, more than anything, I am still just stunned and disbelieving. As the past three weeks have unfolded, I have felt much like I did during those awful hours in the ER with Hudson before she was diagnosed. With each passing minute, it became clearer and clearer that at best, we were in for a very frightening experience, and at worst… well, we just couldn’t think about that at the time. All we could do that whole day was keep breathing and try, impossibly, to comprehend what was happening before our very eyes. It was a down-the-rabbit-hole experience if ever there was one. Reality just yanked us along, step by horrifying step, and we could do nothing except stumble along helplessly, waiting for someone to tell us what came next.

After I’d first noticed the swollen lymph nodes in early February and saw the doctor about them, they seemed to get smaller again, and we chalked them up to an infectious process of some kind. I forgot about them altogether for a few weeks. And then out of nowhere, I passed my hand over my neck again and there they were again (or still? I really don’t know, because I hadn’t been monitoring them, thinking they’d gone away). Over the next ten days, after a visit with the primary care doc, discussions with Jessica and my friend Nirav, a critical care doc at Maryland, and a visit to an ENT, it became clearer and clearer that it was time to get scared. When the ENT wanted a CT scan and a biopsy, I wasn’t surprised—in fact, I was relieved that we were going to get to the bottom of it as quickly as possible. But I was also in complete disbelief. I just couldn’t believe that the word “biopsy” was even on my radar. Was anywhere within 600,000 fucking miles of my radar. Even as I went through each day feeling as though it were simply impossible that the universe could possibly shit on us in such a terrible way again, I also grew more and more certain that that’s exactly what it was about to do. It was (and still is) an incredibly surreal time. I felt like I was in the mirror room at the fun house—turn this direction and life looks one way, turn another direction and it looks totally different, and every direction feels completely insane. In one breath, we were giddily discussing our crazy plans to renovate a crappy 1960s ranch house into a beautiful, light-filled bungalow that we’d live in until we died. And in the next breath, we were discussing the possibility that I might have cancer. 

So when the pathologist finished looking at the slides and came back over to the table and said, “We’ll still have to do confirmatory tests, but it looks like Hodgkin’s to me. I’m so sorry,” I was simultaneously shocked and unsurprised. I don’t know how that’s possible, but it’s true. I’d been nearly certain that’s what I was going to hear, and yet I was still in utter disbelief that this could possibly happen. How the fuck could this possibly happen? How. The. Fuck. And of course, right after that, WHY? Why is this happening to us? AGAIN?

I read my post from yesterday, and I mean it. I read the few responses I’ve managed to write to messages and Facebook posts, and I mean them, too. I am trying to think positive. I am trying not to think too far into the future. But in everything I say and write, I also recognize the same protective coating of utter shock that kept me alive in the days after Hudson got sick and died. I read what I write and I listen to what I say and I think, “Wow, I sound way more upbeat than it seems I should feel.” But I’m not doing it on purpose. At least I don’t think I am. Maybe my brain is doing it on my behalf, to protect me from the fear, from the confusion, from the anger. After all, it has lots of practice at this. 

And it’s a good thing, because in many ways, I feel the same today that I did the day after Hudson died. Obviously, nothing, nothing short of losing Ed or Jackson could ever be as bad as that, but the fear of the unknown future is the same. When Hudson died, I didn’t know how I would live. I knew I would live, but I didn’t know how. I had no idea what was in store for me, but I knew it would be awful. It might get better afterward, but it would be awful first. I just didn’t know how awful it might get. Today is the same. I know there is a dark night ahead of me, but I have no idea how dark it might get. I have that same feeling I had then that something is stepping right in the middle of my chest and won’t let up (but this time, I am terrified that it’s actually the cancer). And I am scared. And confused. And angry. 

But the shock works. And the bucking up works. And Ed and Jackson and Hudson work. I have no idea what lies ahead, but on this, another terrible day after, I’m just grateful for that protection.

Thursday, March 29, 2012

Life Is Both Cruel and Beautiful

Of course, I have known this truth for a long time, but I never really knew it until Hudson died. And the world grew so very dark. And we were surrounded and uplifted by so much love and light from literally all corners of the earth. And then Jackson was born. And the world grew brighter again. And all those corners of the world celebrated with us. 

Today, life showed me once again how terribly cruel and terribly beautiful it can be.

This afternoon, I was diagnosed with Hodgkin’s lymphoma. I discovered some swollen lymph nodes back in the beginning of February, and after getting them looked at and waiting them out and trying to treat them with antibiotics, I ultimately went for a CT scan last week and a biopsy today. The pathologist told me within minutes of looking at the slides that it appeared to be Hodgkin’s. They still have to do confirmatory tests, but it is all but certain that they will show what we already know, what I have been preparing myself for since I first felt the lump in my neck several weeks ago. 

Life is cruel.

Last night, we went under contract on a house in Carrboro that we plan to renovate into our dream home, complete with a 1-acre yard for Easter egg hunts and hide-and-seek and maybe even an at-home wedding for one of our kids one day. Today, I have cancer. This morning, I swam a mile as part of my triathlon training to raise money for the Leukemia and Lymphoma Society. This afternoon, I became a lymphoma patient myself. The irony is almost surreal. I can still barely believe I am even writing these words right now.    

There is still so much we don’t know. We suspect, and hope, for a variety of clinical reasons, that the cancer is still in a very early stage. Given that we are moving to North Carolina in a few weeks anyway, our plan is just to meet with an oncologist at UNC early next week and go from there. Hodgkin’s is very curable, even in advanced stages—cure rates are as high as 80-90% depending on the type and other factors. Despite my lack of faith in odds based on our experience with Hudson (the survival rate of her type of meningitis was also around 80-90%), I am obviously going to start from the proposition that I am going to be one of the lucky ones in that 80-90%. I am trying desperately not to even entertain an alternative. I am trying desperately not to think about all that this means for the rest of my life—whether I’ll be able to have more children, whether I’ll get to watch Jackson grow up, whether I’ll get to tend the garden I plan to plant for Hudson at our new home, whether I’ll get to spend many more decades with my dear Ed like I have planned and dreamed of doing. 

No. I will not think about those things. Not today.

Because life is also beautiful. 

Ed is unwavering in his love, his support, and his resolve that we will survive this. We. All of us. Will survive. He and Jackson and Hudson are my very reasons for being, and they are the most stunning, perfect, incredible reasons any person could ever ask for. I have amazing family and friends who will be there for us for whatever we need for as long as we need. I remain surrounded by love and light from all corners of the world (and thank you all for continuing to check in and read and think of us even during my long periods of silence). I have health insurance. I will get world-class treatment. I have a dream home just waiting to be uncovered and lived in and loved by us for many decades with our children who will grow up in it and forever return to it whenever they need an anchor. I swam a mile this morning. With cancer. 

One Good Thing about this diagnosis is that I am reminded, once again, that in spite of the ridiculously rotten luck that just refuses to leave me alone, I am still astoundingly fortunate. 

Life is both cruel and beautiful. I choose to focus on the beautiful. If there’s even a choice.

Saturday, March 10, 2012



One day this past week, the whole family overslept a bit, so our wonderful part-time babysitter ended up being the person who got Jackson dressed in the morning. When I saw his outfit, my brow furrowed in confusion. “What are those pants?” I said, even though I knew immediately what they were. “Did you get those out of the bottom drawer of the dresser?” Obviously surprised, she said, “Yes, was that OK?” I recovered as quickly as I could and said, “Oh, sure, it’s fine. Those are Hudson’s pants. All the clothes in that bottom drawer were hers.”

Her little brown corduroys. 12-18 months size, which is the size she was wearing when she died, along with some 18 months, too. They fit Jackson perfectly at only nine months.

I knew this day would come, the day when he started wearing that same size (of course, it has come sooner than I thought, because he’s such a big kiddo). Soon the day will come when I will buy bigger sizes for him than she ever got a chance to wear (the only 24 months sizes I ever bought were some jammies I picked up on sale after her first birthday—they were so cheap that I bought a few pairs for the following winter, and of course, they never got used). Soon he will no longer be able to wear any more of her hand-me-downs, because there are no more.

In only eight short months, Jackson will be older than Hudson ever got a chance to be. What remains so incredibly striking and awful about that is the recognition, if not truly the understanding, of how terribly short a time it was that we got to spend with her. He is already well past the halfway mark of her entire little life. How is that possible? He is just now starting to hit all those awesome little developmental strides that she started to hit right around this same age. He has so very much awesomeness left to grow into. Why did she never get that chance?

As I’ve said before, I’m working on not dwelling too much on future events and milestones, but it is so hard to imagine what it will be like to watch Jackson grow up when Hudson never will, to watch him hit every milestone she never did. Of course I don’t want Jackson never to grow beyond seventeen months and twelve days, but watching it happen will be hard nevertheless.

As we get closer and closer to the time very soon when we will leave the only home Hudson ever knew, I feel more and more the weight of the monumental shift in our lives that this move will bring. More so than ever before, I feel like we are moving on without her. Even though I know for certain that she will be with us wherever we go (how could she not be?), I still don’t want to leave her behind.

I am reminded regularly these days of the night we left her at the hospital. It was probably close to 11:00 by the time we had cleared everything out of her room. Ed and I walked out of the hospital with our friend Scott. The car was parked just outside the sliding doors. Ed and Scott started loading the car with all the detritus collected over a three-day stay in the PICU with a dozen friends and family members. I opened the front passenger door to get in and suddenly it hit me that we were leaving without our little girl. Forever. My legs buckled under me and I folded myself over into the seat and sobbed.  Sometimes I wonder why I didn’t run back inside, take the elevator back up to the PICU, and fling myself over her body to prevent them from ever taking her away. 

I see that moment in my mind’s eye over and over again every time I picture closing the door to this house behind us for the final time. It feels almost the same.  Part of me wants to fling myself across the threshold in that moment and refuse to leave without her. 

Part of me does not want to keep going on without her. Jackson will keep growing, I know. He has to. I want him to. But I also want endless hand-me-downs from his big sister for him to grow into.  And those I cannot have.