Saturday, June 30, 2012
What I came to understand better as I read your comments here and on Facebook was that Sunday’s post was not about my hair, or even my disease. It was about my grief, my ever-present grief over the loss of my child. I had an inkling of it when I wrote it—as I said, the worst part of not having superpowers is that I have no powers to bring her back.
But what I realized is that I was suffering through another PTSD-like experience that took me back to those terrible days in the hospital, from the moment I watched her lay on the bed without flinching as a nurse stuck an IV in her hand to the moment after the doctor and nurse removed all the equipment that was keeping her alive, and I picked her lifeless body up off the bed and held her close to me and rocked her for the first time in three days. The total powerlessness I felt when that hair came out in my hands again just brought back in Technicolor the sheer powerlessness I felt during those long days that ran into nights that ran into days, as we learned that she had bacterial meningitis, as she was admitted to the PICU, as the doctors told us that children in her situation might suffer brain damage, as she began to have seizure-like episodes in the middle of that first night, as the nurse first noticed her pupils responding unevenly to light, as the first CT scan showed significant damage to her brain, as we waited for her to come out of the medical coma, as we saw her respond briefly and felt hope rising in our throats as she tried to rip her ventilator tube out, as we later learned that both her pupils were blown, as the second CT showed massive traumatic brain injury, as we waited to learn what would happen next, as I watched the nurses remove her ventilator to clean it and I saw that she was taking no breaths on her own, as the doctors told us about how the tests for brain death worked, as they performed the first brain death test and saw no evidence of brain activity, as we spent the next 24 hours waiting for the next test, knowing that if there was no change, the doctors would be required to remove all the life-sustaining equipment and we would have to say goodbye forever. My hair came out in my hands and all of that came barreling back to my mind as I remembered how incredibly powerless I felt as with each passing hour, I saw my girl slipping farther and farther away from us, knowing that ultimately she would never come back. How much I wanted to be able to do something to save her. That awful, hopeful moment when I stripped my shirt off to hold her, in a desperate hope that lying skin-to-skin with me would help her body temperature come up when her brain was failing to do one of its most basic jobs. Bringing her favorite music and books to the hospital thinking that somehow, if miracles happened, they might make a difference and bring her back to us. Lying next to her in the bed and talking to her in hopes that she could hear me and know that we needed her to come back. All that time, knowing, from the moment the doctors told us about the second CT and told us that IF she survived, she would not be the same child we knew before she got sick, knowing all that time that she was going to die. Knowing all the time that the music, the books, the talking, the lying close, the holding skin-to-skin, none of it was going to bring her back. Perhaps (and I hope with all my might that this is true) those things did something to help shepherd her lovingly and gently out of this life and into whatever journey came next for her, but I knew that it would not bring her back. I knew, in spite of everything I was doing, I knew nothing was going to bring her back.
And so it was with my hair. I could shave it into a mohawk and dye it purple and look like a badass and even feel like one for a while, but nothing could stop it from falling out. Nothing could stop me from having cancer. And of course, I knew that the entire time. Of course I did. Just like I knew that Hudson was going to die.
And that’s what Sunday’s post was about. It was about how our brains can know one thing with certainty and yet we still try to fight that certainty any way we can. It was about powerlessness. It was about a mother’s still-constant grief and lingering guilt over not being able to protect and save her own child.
But then I heard from you. And I gained perspective, as I always do. It’s true that I don’t have any superpowers that could save my child, or stop my cancer, or keep my hair from falling out after chemo. But you all helped me remember that I do have some pretty amazing superpowers at my disposal. LOVE is a superpower. HOPE is a superpower. I have these things in an abundance that I never knew possible, in an abundance that I imagine many people never get to experience, in glorious abundance in spite of everything that has happened. And on top of love and hope, I have COMMUNITY. I have a community of supporters, both in real life and virtually, that has kept me afloat when otherwise I might have drowned, that has kept me walking when otherwise I might have stumbled, fallen, and never gotten up, and ultimately, a community that has helped me learn to fly—in the face of the darkest tragedy, I have learned to fly. Community is its very own superpower, and I remain humbled and grateful for that incredible gift that you all have given me.
Love. Hope. Community. In the face of powerlessness, superpowers. Thank you, friends.
Wednesday, June 27, 2012
Monday, June 25, 2012
Sunday, June 24, 2012
My hair is still falling out. Despite the mohawk. Despite the purple. Despite the badass (the word I've heard repeated most often in the wake of my 'do) photos that make me look and feel tougher than I really am.
I am not a superhero. I think one small part of me, the magical-thinking part, looked at those pictures and read all your comments and thought, "You know? They are right. Look at me! I could stop a speeding train if I wanted to."
And then more hair came out in my hands this morning. Purple hair. Little sprigs of hair from the sides. Still falling out. Of course it is. Even badass purple hair is no match for the poison being pumped into my body to try to kill another poison already in there.
I have no superpowers. My hair is still falling out. I still have cancer.
And worst of all, this: Hudson is still gone.
Friday, June 22, 2012
But how it broke my heart when I realized that the younger daughter is three. Three. Hudson would be talking like this now. Unbelievable.
ETA: I only just realized that the embedded player does not work. You can click on the title of the piece to link to it on the PRX website. Sorry about that.
Thursday, June 21, 2012
Wednesday, June 20, 2012
I picked purple because purple is the color of Hodgkin’s lymphoma awareness, and it is the signature color for Team in Training, the fundraising arm for the Leukemia and Lymphoma Society. In case you haven’t already read, I’m training for another triathlon this summer, and I have talked 22 other people into doing TNT events all over the country. Together we are TEAM STRONGER, dedicated to the notion that what doesn’t kill us makes us stronger. So now I am a walking poster for Hodgkin’s awareness and TNT, and I love it.
Before I did this, I doubted whether it would really make me feel any more in control of this whole process than I did before (as I’ve recently written, I was feeling completely out of control). But to my pleasant surprise, it has. I feel stronger, tougher, and more in control than ever, even if that control is mostly illusory. And I feel grateful to be able to feel this way. I know not everyone going through this chemo or other chemos or other cancers gets to feel this way. I know not everyone has a greater than 90% chance of being cured.
I feel stronger today. I hope this last treatment has cured me. I hope that perhaps you’ll consider donating to the Leukemia and Lymphoma Society* today so that other patients out there will have the chance to feel stronger, too, so that other patients will have the chance to be cured.
*Everyone who donates will receive a beautiful purple SCREW CANCER/One Good Thing bracelet.
Monday, June 18, 2012
I’m not sure why the past few days have given me such a time, especially when we really had a very nice weekend and did lots of enjoyable things—nice bike ride with the team on Saturday, trip to Mapleview Farms Country Store for ice cream on Saturday afternoon, mini-date night with Ed on Saturday night in the form of the late showing of “Rock of Ages” where I laughed my ass off, gorgeous Father’s Day brunch sitting outside on the patio of a restaurant, music on the lawn of Weaver Street Market afterwards—it was a wonderful weekend full of the things I love best.
So I read what I wrote last night and think, “What the hell was THAT?” Because at the end of such a weekend, I want to feel grateful, happy to be alive, fortunate to have a curable cancer and to be tolerating the treatments so well that I can actually train for a triathlon. A key reason I began this blog was to stave off becoming a jaded and cynical person after one of the world’s worst things happened to me. I began this blog to honor my daughter’s life, and I don’t do a very good job of it when I whine in the face of a glorious weekend that many, many people, cancer patients or not, would do anything to experience.
So let’s have a do-over here. One Good Thing about going bald is that it will take ten fewer minutes to get ready in the morning. One Good Thing about my hair falling out is that by shaving my own head, I can maybe have a purple mohawk for about a minute (or maybe a day). One Good Thing about feeling a little winded when walking the dog is that it makes me slow down a bit and appreciate all the beautiful things that surround us on our walks. One Good Thing about having to endure PET scans and other scans off and on for the rest of my life is that there’s always an incredibly good chance that they will be absolutely clear. And One Good Thing about having these bad days sometimes is that I am reminded of how fortunate I am to be surrounded by love, light, and strength in the form of so many people, both known and unknown to be, who are helping me carry this. Thank you all for the words of support and encouragement after my post last night.
Part of today’s turnaround came from reading about another blogger (apparently a famous one?) who has been through a very awful and rare form of cancer. She lost her uterus, had several other emergency surgeries, and endured a treatment which sounds WAY worse than what I am going through. She wrote this at the beginning of her cancer journey:
“I’ve never asked “why me”….instead I’ll be glad it’s me. My mother said she wishes she could carry the cancer for me……that’s how I feel…..I’m glad I can carry it. It could be my child or my husband or another family member or friend. I’m tough. It will take a lot for it to bring me down.”
I won’t lie. I have asked, “Why me?” Not because of the cancer by itself, but Hudson’s death and the cancer together. I have asked. I wish I could say I haven’t, but I have. Not that I would want anyone else to carry it, but it’s hard not to wonder why we have to carry both, and so close together. But I don’t want to think that way. I know there’s no reason. In the same way that I know I have no control over any of this, I know that there’s no reason it’s me. It could be anyone. It could be someone else that I love. So I’m going to have to go with Ashley and be glad it’s me. Because as I have learned over the past two years, I am pretty damned tough, too. While I have confidence that most everyone could carry all of this if forced to (because like me, you would be totally amazed at what you can do when you have no choice), I am glad that most of you don’t have to.
Yet another One Good Thing for today.
And SCREW CANCER!
Sunday, June 17, 2012
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.
Saturday, June 16, 2012
Friday, June 15, 2012
Thursday, June 14, 2012
Wednesday, June 13, 2012
Tuesday, June 12, 2012
Every day, he does new and funny things that I want to remember, but I only just came up with a good way to do it: the blog. I am going to start writing quick little posts about all of Jackson’s silly mannerisms and other things I want to be able to look back on someday, including photos. Blogger now has a mobile app, so this should be pretty easy.
Inspired by this wonderful post by a mommy blogger (which is a must-read if you are a parent), I’m going to call these posts “I Love…”
To start with several things I’ve had on my mind the last few days…
I love to watch you determinedly follow Bess back and forth across the room six times in a row, hoping she’ll stop running away from you.
I love to watch you learning to use signs to tell me what you want, including the signs for “Eat,” “More,” and “Milk.”
I love to watch you gently hit yourself in the head when we get to the part in “Five Little Monkeys” where one falls off and bumps his head (and oh, how this reminds me of your big sister, who loved to do the very same thing).
I love the way you grab my face and pull me close for kisses.
I love how you used to refuse to try to walk unless someone was holding both your hands, and now you always insist on holding only one, working so hard on your balance with the other.
I love how when you play peekaboo, you put your hands over your ears instead of your eyes.
I love listening to you babble.
I love how single-minded you are when you are trying to do something.
I love you, my sweet boy. I hope that one day you will enjoy reading these posts as much as I enjoy the things that inspire them.
Saturday, June 9, 2012
Hudson will never have that. I will never have to lean my head over a booth and tell her and her friend to pipe down just a touch. I will never get to wonder just what she and that friend might be whispering about—boys already? Or just someone funny they saw walking by? I will never get to feel that motherly pride of being let in on the secret at some point or another, knowing that she trusts me enough to tell me something special.
I have been thinking a lot lately about how she seems so very far away from me these days. We live in a town and a house that was never her home, although she visited here from time to time. I wear my hair in a cut she never saw me with. We take walks on routes she never knew. Her little brother grows older and bigger each day, and soon I will no longer have the opportunity to mention her at almost every breath, because he will be older than she ever was and I will no longer have her as a point of comparison. I spend far too much mental energy thinking about cancer, wondering how much longer I will have to be in treatment, how it will affect my life, whether I will really be cured, how I will manage for the rest of my life the fear of the cancer returning. There is too much white noise. I feel like I am missing the essence of it all somehow.
I want more time. I want more time with her. I want more time for her. I want her. I want her.