Sunday, June 17, 2012


My hair. It’s still falling out. Often by the handful, especially in the shower or when I am trying to fix it (which now involves trying to comb the dwindling amounts on top over the pink bare spots up there). At last week’s team training in the pool, I took my goggles off once and pulled what seemed like a ton of hair out with them. Embarrassed and hoping no one would notice, I splashed my hands in the pool to disperse the stray hairs. Somehow it still manages to look pretty normal, as long as you aren’t looking down on it from above. But every time I run my hands through it or over it, dozens of little pieces fall out. I imagine after Tuesday’s treatment, it is going to get even worse.

I keep saying that it’s driving me crazy. It is always tickling my neck. It’s all over the floor, in the sink, in my comb, on the pillow. It’s everywhere. I had my first incident where a stray hair fell in my food the other night. I’m always having to tell Jackson not to pull on it. I keep saying I am going to just go ahead and shave it off. And I keep not doing it. I guess I keep hoping that maybe it will stay intact just enough to look OK and I won’t have to shave it after all.

I’ve been trying to figure out why I am so reluctant (other than the obvious, which is that I don’t want to be hairless). I’ve been anticipating it from the beginning. I’ve got cute hats and pretty headscarves to cover my head once it’s gone. And yet I just can’t pull the trigger and shave it off.

I’ve thought a lot about the days and months after Hudson died, when I so wished for some kind of external sign that I was mourning the loss of a child, like the black crepe worn by women in the Victorian era after a death in the family. I’ve been thinking about how cancer is the same kind of silent struggle—especially when I otherwise look and feel so young and healthy, no one would ever know that I have it, unless and until I lose my hair. A woman with a bald head screams “CANCER PATIENT!” In some ways, I’ve thought, like after Hudson died, wouldn’t it be nice for people to know just by looking at me that I am going through something awful, for them to know to approach me gently? Maybe, but as Jessica pointed out when we talked about it, there’s no way to turn this sign off. After Hudson died, I might have wanted a sign in some situations and not in others. But bald is bald, and headscarf or no, everyone who sees you knows you have cancer. There’s just no getting around it. So having this kind of external sign of my internal struggle isn’t really an incentive to shave my hair either—I don’t really WANT to go around looking like a cancer patient, especially when I don’t feel like one.

I think what is so hard about this is how out of control I feel—about my hair, about whether or not the cancer will go away or progress, about whether I will suffer any long-term effects of the treatment—all of it. The hair is just one in a string of things that make me feel so out of control. Should I go ahead and shave it or not? Will it keep falling out or will it remain salvageable but thin? One friend suggested that someone she knew went ahead and shaved her head just to feel in control of the process. This sounds reasonable, but I guess I feel wiser than that somehow. I know, just like I know that trying to cut Jackson’s food into minuscule pieces, that I have no control—doing these things only creates the illusion of control, which can certainly help sometimes, but it doesn’t change the fact that I can’t control a damned thing when it comes to what will happen to me or my family. Whether my daughter dies, whether I get cancer, whether my hair will keep falling out, whether my lungs will be scarred from chemo, whether I will really be cured. None of it. And it makes me angry. And it overwhelms me.

Last week, I had my first moment of what I would call real and acute fear of dying since we first learned that the lymphoma was early stage and highly curable. I remember crying with relief after that first conversation with the oncologist, who told me that my cancer was Stage I/II and that I had a greater than 90% chance of being cured. Since then, I’ve just been thinking about this thing as just one more hurdle I have to jump. I’ve been behaving as if by August or September, this will be a thing of the past. I haven’t been thinking too much about the possibility of relapse or long-term effects of treatment. I started training for another triathlon and raising more money for the Leukemia and Lymphoma Society as just another way to feel in control. 

And then I noticed I was feeling a little winded when walking the dog some days. We walk her on a fairly short route that has a deceptively steep incline at the end, and I would find myself a little out of breath as I turned around at the top of the small hill. And, as I tend to do over even the smallest things ever since Hudson died from what started out as the most routine thing ever, I started to worry. One day, while Jackson was napping, I started reading more about the side effects of bleomycin, one of the four highly toxic drugs that get pumped into my superior vena cava once every two weeks . It can cause damage to the lungs, including pulmonary fibrosis, a scarring of the lung tissue that can lead to death in a not insignificant percentage of Hodgkin’s patients (bleomycin is also part of the treatment for testicular cancer, and Lance Armstrong refused it because as a world-class athlete, he didn’t want to risk his lungs). Pulmonary fibrosis is the main thing I’m trying to avoid by not taking the Neupogen shots to boost my neutrophil count (hence, I remain highly susceptible to infection). Pulmonary fibrosis in advanced stages is terrifying—patients basically suffocate to death as the scar tissue in their lungs progresses and makes it impossible for them to breathe. I thought about my windedness while walking the dog. I imagined scar tissue wrapping itself around my bronchioles and rapidly moving outward like a crack in glass. I was scared. I wept while Jackson slept, feeling overwhelmed by the feeling that I don’t want to die.

The moment was long and frightening, but it passed. But still, I emailed the doctor to ask when we’d schedule another pulmonary function test to check for possible bleomycin damage (I did one as a baseline before starting chemo). He said that they don’t routinely do them unless a patient has symptoms. Because I live on the safe side now, I told him about feeling winded when walking the dog and having a harder time breathing than I used to when running. I disclaimed and disclaimed and disclaimed that all of this could just be that I am out of shape because I’d taken more than a month off from working out after my race, but thankfully, he wanted to be on the safe side too, and scheduled another pulmonary function test before my next treatment. So I have to go do that sometime tomorrow. At least I’m taking the test. Is this just another illusion of control? I can’t do anything about whether the drug has already damaged my lungs, but I can do something about keeping it from damaging them any more? I guess so.

I also have a very big PET scan coming up in two weeks. After Tuesday, I’ll have completed two of four cycles of chemo (two treatments in each cycle, so four of eight total treatments). On July 2, the day before I start my third cycle, we’ll do a PET scan to see whether or not I am in remission. If the scan is clear, then I will only have to do the remaining two cycles of chemo we’ve been planning all along to “mop up” any residual cancer cells. If it still shows any cancer, then I’ll have to do four more cycles of chemo, two to hopefully put me in remission and THEN two more “mop up” rounds. For a time, I’d been thinking that this wouldn’t be so bad. Especially after I felt pretty decent after the first round of chemo. I really am incredibly fortunate to be tolerating it so well, but make no mistake—it still sucks. I’ve started dreading treatment day so much that I sometimes get a wave of nausea just thinking about the horrible taste of the saline IV flushes they do between pushes of the drugs. And no, a saline flush doesn’t taste like salt in your mouth—it tastes like what I imagine drain cleaner tastes like. And although I’ve tried to cover the taste with watermelon jolly ranchers, now just thinking about watermelon jolly ranchers makes me feel sick. And again, I’m lucky that I don’t feel horrible nausea in the days afterward—the nausea medications make a tremendous difference—but I do generally feel just bad. My stomach feels off (though not all the way sick), I feel exhausted, I feel weak, and on top of all that, I’m supposed to avoid crowds and children because I am so susceptible to infection. It is no fun at all, especially when I have an active one-year-old with whom I could be out doing things. And on top of all that, if I have to do two extra rounds of chemo, I will not start teaching in the fall, because the risk of infection is just too high from working in a law school (where kids come to school sick ALL the time because they are too stressed to miss class). The law school has been amazing—they are still going to let me start working, mostly from home, on a variety of other projects, but I wouldn’t be able to start teaching until the spring.

So the PET scan is just looming out there. The doctor says I have a 75% chance of being in complete remission as of the time of that scan. But if you read here at all, you know how I feel about odds. I remember after my swollen lymph nodes didn’t go away, Jessica said that she just couldn’t fathom that they could be cancerous because how could another awful thing like that happen to me, and yet, she said, she also knew that I seem to have really rotten luck when it comes to things like this. I really, really, really want that PET scan to be clear, but I can’t help but worry that it’s not going to be. I don’t want to do four more cycles of chemo. I hate chemo. I want to get on with my life after cancer. But again, I have no control over these things.

Hudson. Cancer. Balding. Scarred lungs. PET scans. Relapse. Death. No control. 

As always, the only thing I have control over is how I deal with all of this. Today, I’m not dealing so great. Today, I am feeling really overwhelmed by it all. Hopefully tomorrow will be better.

Maybe I should just shave my damn head.     


  1. Mandy:

    Strength to you...and all our prayers that the scan will be clear and this will, indeed, be behind you. But if it isn't, and you decide to shave your head....may I recommend that scene from GI Jane where Demi Moore shaves her head. I always thought it was a little kick ass...even if it is Demi Moore and even if that movie was, well, not a masterpiece.

    We'll be routing for you as always....

  2. Dearest Mandy, I think you are dealing wonderfully, owning your feelings, acknowledging them, processing them... And, I know that so many of us wish that we could somehow have some control to make it better for and with you... and all we can do is continue to witness and send love to you. Onward, we all go. Sending you hugs,
    Rachel C.

  3. Reading along and thinking of you, Mandy. Sending you love and support.


  4. I stand in awe of you. Seriously. When I think back on my most hellish years-and I've had some beauts-I tell myself to SHUT THE HELL UP and quit whining, even to myself, because you are so gracious in the face of challenge.

    Sending huge hugs.

  5. Mandy,
    I'm sorry you're having a bad day. You WILL kick the ass of cancer!!! You will see it squirming on the ground beneath your feet! You will beat this!

    At the same time, I totally get where you're at...once you've been struck by lightning you know it can strike twice. Sending love, Em

  6. The only thing I can even offer the slightest modicum of advice on is the hair - can you just sort of give in to the head scarves and swim caps right now, without shaving it off yet? If you wear the scarves and swim caps, you'll have fewer incidents of hair falling when it is inconvenient - like, with the goggles or into your food or Jackon's hands.

    The scarves themselves will give people that "treat me gently" sign (at least some people; some will be oblivious) and they will sort of help you keep some control over where and when you deal with the handfuls.

    Scarves are probably better than hats, although I've seen very classic scarf and straw hat combinations that are just beautiful.

    Also, how about hair spray? Perhaps load your hair up with hair spray or some sort of gel, to sort of glue the loose pieces in place until you are again somewhere you can more conveniently deal with it.

    My Mom went thru chemo in her mid 40s - her hair got very thin but never completely fell out. She relied very heavily on hair spray to kind of cover the bare spots and keep the loose hairs from sprinkling out all day.

    One day at a time. Don't let yourself get too far down the road with your worries (yeah, easier said than done but you intellectually know it) - one day at a time. Then time will pass. That's one thing none of have any control over - time passes, and you'll soon be on the other side of this.


  7. Mandy, I am so sorry that you have to deal with so much uncertainty especially the side effects of the chemo treatments. I will be thinking of your important scan coming up and hoping and praying for complete remission. I will also be thinking of your lung function and hoping and praying that all be well with that.

    And you will look beautiful with any - or no - amount of hair. Seriously. Sending hugs and love from DC. Kate Z.