Wednesday, May 23, 2012


This past weekend, we went to a crawfish boil that one of our friends hosts annually. The last time we went was in 2009, when Hudson was almost six months old. Three years ago, a number of our friends had also recently had babies, and at one point during the afternoon, we were all sitting in a circle with our babies in front of us, chatting and watching them interact to the extent that 3-9-month-olds will do.

I’ve had so many of those moms mention that day to me since Hudson died, what vivid memories they have of meeting her that day, how happy and calm and laid back she seemed.

As we prepared to go to this year’s crawfish boil, three years later, with our sweet Jackson and without our sweet Hudson, I tried to steel myself against how hard it would be to see all of those babies three years later when Hudson would not be among them. Frankly, this is the one of the only things I will not miss about being in DC—even though I love every one of them to bits and will still watch them grow up on Facebook, I think watching all of Hudson’s friends grow up in person would have been incredibly painful on a regular basis, and if I am being totally honest, I am glad I don’t have to do it.

Saturday’s experience only confirmed those feelings. While I was spared the entire entourage of babies being there, two of the babies in the original baby circle were there, and one in particular just took my breath away. She was so tall and lithe and lean and beautiful. At one point, she asked her mother to help her get onto a pogo stick (obviously meant for the adults to use), and as her mom held it for her, she climbed on and giggled, “It’s not stable!”

“Stable.” A not-quite-three-and-a-half-year-old using the word “stable.” I was reeling thinking of what kinds of things Hudson, three months older than this child, with very talkative and encouraging parents, would have been saying. What would she look like now? Would her hair finally have started to grow long? Would she be lithe and lean by now or would she have her precious little apple cheeks still lingering from babyhood? What would she have looked like dancing around to the New Orleans-style band, twirling a Mardi Gras parasol?

I longed for her, as I so often do. All I could do for much of the afternoon was keep my eyes cast down on Jackson for fear that my tears would betray my sadness on an occasion not really meant for sadness. It was hard.

In treatment-related news, I had my second chemotherapy treatment yesterday (2 down, hopefully only 6 to go). Still no major side effects except more tiredness these first few days after the treatment. As I mentioned during my first post about treatment, they check my blood counts each time I go in to make sure that I can receive treatment that day (if certain numbers go too low, there’s a chance they won’t treat that day). Unfortunately, my counts yesterday showed that I was severely neutropenic, meaning that my absolute neutrophil count was extremely low (average ANC is above 1500, anything below 500 puts you at significant risk of infection—my number was only 300!). Neutrophils make up the vast majority of your white blood cells and are basically the first responders when you get an infection. Neutropenia, even severe neutropenia, is not uncommon for someone undergoing chemotherapy. Oftentimes, they will delay treament and give a drug called Neupogen to boost the white blood cells before going ahead with another round of chemo. But the Neupogen can have some pretty devastating effects on the lungs (especially in combination with the bleomycin I am taking for chemo) and I really did not want to have to delay treatment in any event. Fortunately, Jessica’s friend Christina, a Hodgkin’s survivor, had shared with me a study that her oncologist had shared with her showing that it is safe and effective to proceed with full doses of regularly scheduled treatment without the Neupogen injections. I talked with my doctor about it and he said that would likely be the plan anyway for a young and otherwise healthy person like me. So fortunately when the nurse paged him with my counts yesterday, he said it was OK to go ahead and give me treatment. So yay for treatment on schedule and no Neupogen.

On the flip side, being severely neutropenic is no joke. If I got some kind of infection in this condition, it would mean an immediate trip to the ER and likely a hospital admission. So I am having to take some pretty serious precautions against infection, including wearing a mask in public (grocery stores, etc.) and not eating any raw fruits or veggies that can’t be peeled. Next week, I am supposed to travel to a conference in California, so I will have to wear a mask for the entire flight and if I’m really being on the safe side, I will wear one during the conference as well.

Wearing the mask is hard. I’d pretty much come to terms with losing my hair (which still hasn’t happened yet, but who knows when it might). There’s probably no way that I can get around looking different. But what I don’t want to look is sick. On Monday, my good friend from high school, Laurie, went with me to a workshop at the hospital called “Look Good, Feel Better” sponsored by the American Cancer Society and a bunch of cosmetology associations. I went looking for good tips about wig use and how to tie a head scarf in a bunch of different ways, which they covered a little bit, but mostly it was about how to apply makeup, especially if you have no eyebrows or eyelashes, or if you have skin blotches from the chemo. Now, I am not a makeup wearer. The only makeup I have ever worn is mascara, and when I was younger, a little bit of concealer to cover the dark circles under my eyes. I gave up on mascara after Hudson died because I would inevitably cry it off at some point during the day, so it seemed ridiculous to keep putting it on in the morning. So I have basically been au natural for the past two years and have really just gotten used to it. The few times I have put on mascara for a special occasion or a photo, I almost feel like a vamp. So you can imagine how I felt after a full face of concealer, foundation, blush, eyebrows, eyeshadow, eyeliner, and lipstick (all of which I got to keep for free). Laurie said it looked totally natural, and it’s true that I didn’t look as Tammy Faye as I thought I might with all that on. I still poo-pooed the idea that I would ever wear all the makeup, especially during treatment, but then I started thinking about what I will look like when I lose my hair. I started thinking about how I would look with no hair AND nothing on my face for color, and it occurred to me for the first time that I can deal with losing my hair, but I don’t want to look sick or frail or pale. So maybe I will wear some of that free makeup I got after all if my hair actually does fall out.

But that’s why wearing the mask is hard. I just don’t want to look like a sick person, especially when I don’t feel sick or frail. I feel fine, if not strong and vibrant. I chase a one-year-old (tomorrow is his birthday, by the way!) around all day. I just happen to have cancer is all.

In the grand scheme of things, wearing a mask is obviously not a big deal. I certainly don’t care enough about it to risk GETTING sick from not wearing it. Wouldn’t that be another terrible irony?  

So wear it I will. I love how Jackson just kind of takes it all in. I cut off all my hair—he didn’t miss a beat. I was wearing a mask while we ran errands today—he looked at it with interest and then just smiled. In his eyes, I’m just Mommy.

And that’s all that matters, really.  Really. 


  1. Really. You are a wondrous woman, Mandy, and a phenomenal mother. I wish so hard you didn't have any of the burdens that you do. xo

  2. Mandy--Wow, you are dealing with so many contradictions these days....I just wanted to drop in and let you know that I'm still thinking about you all the time, as always. And, from an avid make-up wearer (who likes to think she still looks natural when she wears it!), I say give it a shot. I think it might surprise you in its ability to help you avoid looking sick/frail/pale (although pale IS the new tan...but that is a different story for a different day). If you don't end up using it, then can I at least call dibs on all of this alleged free makeup that you have in your possession that would otherwise be going to waste? ;) <>
    sending love and light,

  3. So glad that you've been feeling relatively good.

    Happy early birthday to Jackson!


  4. Just thinking of you and admiring how you deal with so many obstacles. Stay strong!

    Best Jana

  5. Tears and hugs Mandy. You are awesome and beautiful...mask, wig, full make-up or au naturale. Olivia