Sunday, May 27, 2012

Up and Down Days

Life after losing a child and living with a life-threatening illness both make for really roller-coaster kinds of days. 

I spoke a little too soon on this week’s chemo treatment. While I have still been almost totally nausea-free (I’ve suffered a minor wave here and there usually remedied by a snack), the fatigue did get markedly worse and lasted longer than after the first treatment. For most of Friday and Saturday, I couldn’t do more than an hour or so of activity at a time without needing to lay down for a bit. My energy level today has been much better, but I am mentally trying to prepare myself for when triathlon training starts in earnest, and I am really hoping that the exercise is going to help me fight the fatigue. At worst, I may have to do 10 days on and 5 days off of training or something to that effect—honestly, the idea of going out for a training run during the last several days made me exhausted just to think about. But I am committed to doing it, and I really do think that once I get going in earnest and start training with the team, it’s going to make a big difference. [Speaking of TEAM STRONGER, we are up to fifteen members registered to do a variety of different TNT events across the country this summer. Completely amazing. If you have any questions or are still thinking about signing up, please don’t hesitate to email me.]

But today really has been better, and we took advantage by having lunch with some dear old friends and running some important errands, and then I did some major birthday party preparations before I go out of town for the week while Ed took Jackson on a little bike ride in his new trailer and then for a dip in Poppy’s pool. 

While we were out, I was sitting in the backseat with Jackson waiting for Ed to come back to the car from picking up some milk for Jackson to drink (we’d stayed out longer than we expected) and I watched Jackson pretend to bump himself on the head with his hands. He does this often, but it took me until today to realize that he was making the motions to “Five Little Monkeys Jumping on the Bed.” As I started to sing the song, he made the motion again when I said, “One fell off and bumped his head,” and then when I got to the part about how the doctor said, “No more monkeys jumping on the bed,” he pointed his finger and wagged it up and down. I was floored. I’d done this with him a few times, and I’m sure Ed had done it with him even more, since he is the one who usually does bedtime stories, but neither of us realized he’d taken all this in. I was delighted, as was Jackson, who clearly realized he was on to something good. And then immediately, I was overcome. I sobbed through my tears as I remembered Hudson’s own pride in learning these exact same motions to the exact same song. They are so similar, right down to the way they hold their little right-hand pointer finger, just a little bit crooked and bent over the thumb a tad. It was too much. Jackson continued to giggle as I continued trying to sing and smile through my tears. I really did feel like laughing and crying at exactly the same time. 

Later, after we got home, I went through my new purchases from my errands today: 2 cute carpenter caps and several head scarves. My hair is starting to fall out. In only small bits and pieces—no patches yet, just lots of hair on the pillow in the morning, in my hands in the shower and afterwards as I try to fix it. For now, nothing noticeable has fallen out, so I’m just enjoying it while it lasts. But I decided it was time to buy some head coverings because the inevitable seems nearby. Anyway, I was showing off my new scarves to Dad and Ed, remarking how pretty the colors were. A bit later we were sitting outside on the porch. Dad was in the pool and Ed and Jackson had just gotten out and were playing on the deck. I sat in one of my new carpenter’s caps. And suddenly I just got hit with one emotion: I don’t want to go bald. As I sat and thought about it some more, I got teary-eyed and said it out loud: “I don’t want to go bald.” By then Ed was already up with his arms around me and I was full-on crying. “I keep saying I don’t care about it, but I guess I do.” I don’t know why I care. It really is just hair and it will grow back. I know these things. I think I was just having a moment of feeling sorry for myself about all of it, thinking how sucky it is to have cancer. I try not to let myself indulge in this kind of thinking at all, let alone at length or out loud. There are just so many people who are way, way worse off than I am. In fact, just yesterday, Jessica told me that her 60-something-year-old neighbor was diagnosed with Stage 3 non-Hodgkin’s lymphoma and was given 3-4 WEEKS to live. 3-4 WEEKS. What the hell do you do with that kind of information? No, there is no room for me to feel sorry for myself when all I am facing is losing some hair on my relatively easy way to being CURED and living a long and joy-filled life. No. Room. At. All. But today, it just got me. It was over just about as soon as it started, and pretty soon, I was trying on the head scarves, seeing if I could figure out different pretty ways to wear them that don’t scream, “I’M A CANCER PATIENT.” It’s not very easy, but I’ll manage. 

Up and down days. That’s what these are. Up and down days.


  1. Mandy, there is room for all of it. It is okay to find this hard, it is okay to be pissed to all hell about losing your hair, it is okay. None of it makes you any less wonderful.

  2. Ditto. ALL OF IT.
    Sending love.
    Rachel C.

  3. Yup, what they said above...

    Your dear family, your friends, your i-friends...all love you no matter if you have hair or not. You are most certainly allowed a pity-party whenever you damn well feel like it. You are still amazing!

  4. Thinking of you on your up and down days and all the days in between. Bless you Mandy x

  5. So exhausting, trying to stay positive, isn't it? It's ok to feel sorry for yourself now and then. Lord knows you have every reason to do so. But glad that in the face of it all, you recognize all of your blessings. Sending love. Olivia

  6. Thinking of you daily. Yeah, some people are fighting scarier cancer battles, but it still sucks to have it in any form. Period. You're allowed to be angry, frustrated, and sad.

    I read this last night (wasn't able to comment) and thought of your sweet girls as soon as I woke up this morning. She is never far from my mind. I will never stop wishing she was here with you. Lots of love.

  7. You're still one of the most gracious people I know. Hair, no hair, cancer, no cancer.



  8. There is a lot of strength and hope to be found in realizing that others who are living with grace under so much more difficult circumstances than your own.


    However, I do also hope that you continue to leave yourself room for the grieving you have to do over the difference between the life that you hoped you would have (with Ed and Hudson and Jackson, no cancer, etc.) and the mostly wonderful but sometimes very hard life that you ended up with. It's ok to feel that pain and let it run through you. It's ok to let your perspective be blurry for a moment. It's ok to wallow for a little while if it helps you feel what is happening just below the surface.

    I will keep saying it: you are amazing. You are so inspiring. You are a wonderful mom. You are so strong.

  9. You are stronger than anybody should ever have to be, plain and simple. I cannot tell you how many times I hvae wondered, "How is this possible???" Screw cancer. I'm so proud of you. Lucky, lucky family you have.