Thursday, April 5, 2012

Sideways World

If you are a fan of the series “Lost,” you know what I mean by “sideways world.” There’s one world where everything is real and happening in real time, and then there’s the sideways world, where everyone is in some sort of in-between world after death but before moving on to something else. That is kind of how I feel right now, except my sideways world is the one where I have cancer. 

It’s just too surreal. Yesterday, Ed and I went to the hospital for what we thought would be the surgical biopsy of one of the swollen lymph nodes in my neck. As it turned out, I had miscommunicated with the patient coordinator and we actually only had a consult with the surgeon (the biopsy will be tomorrow morning in the operating room under general anesthesia). When we were leaving the clinic, we crossed the pedestrian walkway to the parking deck. We passed a young woman, probably in her twenties, holding on to the arm of someone who looked like her dad as they walked past us. She looked thin, a little frail, actually, and she was wearing a head scarf. She was obviously a cancer patient. Our eyes met and I smiled at her, not a big smile, just a little one. 

I thought to myself, “That is going to be me in a few months. How is that even possible?” 

How is that possible? This morning, I swam almost a mile in the pool and ran almost seven miles. The whole time, I was thinking, “How is it possible that I have cancer?” 

This afternoon, I got a call from the Leukemia and Lymphoma Society, offering to hook me up with basically a cancer mentor, a person close in age and gender with a similar diagnosis to me, to offer me support and answer questions, etc. I asked her if I could get back to her. Honestly, I still don’t even know where to begin to know what to think, what to ask, what kind of support I might need. Part of this is because there’s still so much we don’t know—what type of Hodgkin’s I have, whether it has progressed beyond the lymph nodes in my neck (again, I fear the pressure I am feeling off and on in my chest is more than just stress—it is very typical for Hodgkin’s to spread to the lymph nodes in the sternum)—but it’s mostly because I am still having such a hard time grasping that it’s really real. I’m here in the real world, training for a triathlon coming up in three short weeks, making plans with our architect to start the renovations on our new house, looking forward to spending a magical summer with Jackson as he becomes more and more engaged with the people and the world around him. But over there in sideways world, I have lymphoma. I’m having a lymph node removed from my neck tomorrow, a procedure requiring general anesthesia (which scares me more than just a little bit) and which will give me a scar on my neck and keep me out of the pool for at least a week just when I’m supposed to be starting to peak in my training. I’m staring down numerous medical appointments over the next several weeks that will take me away from Jackson. I am coming to terms with the fact that I will not be able to breastfeed him through his first birthday, both because I won’t be with him for much of the time and because once I start chemotherapy, my milk will be toxic. We’ve got some milk in the freezer but not enough to get us all the way through May. I am just beginning to read about others’ experiences with chemotherapy, trying to figure out whether I could possibly still attend a legal writing conference at the end of May with my future colleagues, whether it will even be possible for me to start my new job this fall as we had planned, whether we need to hire a nanny rather than putting Jackson in school because I will be so immune-compromised, and whether I will want to wear a wig or just a head scarf.

How the hell did we get here? How did this become my life? And how horribly familiar it feels to be asking these questions again, questions that we just asked not even two years ago when Hudson was so cruelly taken from us. 

And yet, in spite of it all, I somehow still feel positive and hopeful. I am afraid of lots of things to come, for sure, mostly of what it will be like to go through the chemo, but I am making plans as if a year from now, this will be mostly behind us, with the exception of a lifetime of screenings to make sure the cancer hasn’t returned. I feel very well physically, which I can only hope bodes well for my ultimate prognosis. I am continuing to train for my race, working under the assumption that I’ll be able to complete it (and I just read about a study that showed that vigorous physical activity resulted in better outcomes for lymphoma patients and that it is safe and effective even during chemo!). I am treating this cancer almost like it is a corporeal being, talking trash to it all the time and warning it to get going before I and my entire posse (which is a big freaking posse) have to chase it out of town.

The real world and sideways world are going to converge pretty soon. And although I have no idea what it’s going to be like, I feel prepared to face it head on with the help of my family and my incredible friends and all of you. Somehow, I feel prepared. I think it must be another gift from my little girl.


  1. It is a gift. But also you're just an incredible person, Mandy. Hugs and prayers from Austin, tomorrow and always.


  2. Praying for safe surgery tomorrow, Mandy, and that it will yield hopeful information.

  3. I am honored to be just one tiny part of your "big freaking posse." You are such an incredible person, and I truly admire your ability to keep on keepin'-on. You are amazing.

  4. I'll be thinking of you tomorrow. You are one of the strongest people I 'know'.

    Hugs to you.

  5. Sending prayers your way...hope your surgery goes well tomorrow. I'll be thinking about you and your family.

  6. Mandy,

    Ever since I heard this news I have been bursting with ire over this news. I constantly find myself nodding "no" while struggling to find the right words to say - that we love you, we are here for you, that if anyone can kick cancer's ass it's you, but that you so so so shouldn't have to.

    Can't wait to give you hugs soon.

    Alex and Olivier

  7. I've kind of gone back and forth on sending this on, but my high school classmate was diagnosed at 32 with breast cancer when her son was 2 months old, after years of mentioning this "weird lump" in her breast. She will be OK in the end-- and YOU will be OK, too-- but her journey is full of sadness, joy, beautiful love notes to her boys, and a lot of just dealing. If you want to read along, go to
    We love you... Melissa

  8. Mandy, the breastfeeding will work out, I know it's important to you. You have done an amazing job of feeding him so far and giving him the best possible start. Am praying for peace for you and Ed, for all to go well with the biopsy and great results from all the appointments and tests. Will be thinking of you all this weekend. Take care.

  9. Mandy, I am a stranger to you, but I consider myself a lifetime member of your big freaking posse. I am cheering you on, part of the chorus of people echoing your trash talk to this cancer.

    Of all the people in this world, you deserve smooth sailing, and I'm sorry you have yet another trial ahead of you. I know that part of what you are struggling with is having one more thing to distract you from thinking about and being with Hudson, but I feel certain that her spirit will be closer to you than ever as you fight and beat this. I am not a religious person, but I am having prayerful thoughts for you this morning as you have your biopsy and throughout the whole thing, that you should make a full recovery, that you shall live a very long, healthy, and happy life with Ed, Jackson, your future children, and Hudson always with you.

  10. Thinking of you today, Mandy, and sending love and good thoughts. ~Stacey

  11. Great post, very inspiring. Thinking of you! You can get through anything.

  12. How full of hope and inspiration! They should ask you to mentor others, not the reverse! Praying for your treatment and resilience during this time.

  13. Mandy, by the time you are reading this comment, the biopsy will be most likely over. I am crossing my fingers, holding my breath and begging the universe that this flipping disease is at an early stage.

    This might be a different summer than you imagined but you will still move in your new house and plan together with your architect. Jackson will be fine, with or without the breast milk, he had a great head start. And there is no doubt in my mind that you are going to be healthy again, sooner than later.

    Kick that beast in the butt, you can do that!
    Stay strong and keep your chin up!