... listening to you play with a toy that sings "Old MacDonald" and hearing you say, "Wa-oo, wa-oo, wa-oo" instead of "E-I-E-I-O."
... watching you figure out how to stack rings on your ring stacker when no one has ever shown you how to do this.
... the fact that you can play independently and entertain yourself for long periods at a time with little or no direction from me.
... listening to you giggle as you read your books to yourself. I always wonder just what you are laughing at.
Wednesday, July 11, 2012
Sunday, July 8, 2012
I Love...
... to listen to you imitate sounds you hear, like the sounds of a fake bomb dropping in the song "You Dropped A Bomb On Me," which we heard in the car yesterday.
Tuesday, July 3, 2012
COMPLETE REMISSION!
More later, but my PET scan was clear and I AM IN REMISSION! Thank you all so much for the love, hope, prayers, and vigilance. It is a GREAT DAY TO BE ALIVE!
Sunday, July 1, 2012
On the Horizon
Love. Hope. Community. I will definitely need my superpowers these next few days.
Tomorrow I have a PET scan to determine whether or not I’ve had a complete response to chemotherapy after the first two cycles. If the scan is clear, then I only have to complete two more cycles (4 more treatments) of chemo in order to “mop up” any cancer cells that may not be visible on the scan. If the scan shows any remaining cancer cells, then I have to do two more rounds to achieve a complete response, then an additional two rounds of “mopping up” treatments, for a total of 8 more treatments.
The first scenario means that my final treatment will be on August 14, two weeks before classes start at my new job. It means that I can start teaching this fall. It means that I will no longer be in treatment the following month when I complete my triathlon with TEAM STRONGER. It means, in essence, that I am cured.
The second scenario is by no means the end of the world, or even a worst-case scenario, but it means two additional months of chemo, which I dread terribly, even though I have been incredibly fortunate in tolerating it so well. It means that while I will be able to start working this fall, I will be mostly working on projects from home rather than teaching, because my immune system would just be too much at risk in a law school where stressed-out students (especially the first-years) come to class even when they are practically dying because they fear missing anything. It means that I will still be in treatment by the time of the race, which will be OK (at least I think I’ll still be able to do it), but obviously not ideal. It means, of course, that I am not yet cured. Again, none of this is a worst-case scenario—it does not mean I won’t ultimately be cured. It will just mean that it will take more chemo than we’d hoped to get there.
Knowing what so many other cancer patients have to endure, many of whom can’t even hope to be cured, only to stay alive longer, it feels incredibly selfish to even be worrying about this. Four more rounds of tolerable chemo instead of two is just really not that bad.
But oh, how I want it to be only two. Oh, how I want to be cured already. Oh, how I want to get this disease behind me and get back to living a life worthy of my sweet Hudson’s memory.
Tomorrow is a big day. I am incredibly anxious about it. So in addition to my superpowers (and some Ativan, according to my PA), I need to remember my race tips from back before I started chemo:
1. Take one buoy at a time. I just have to get through this one scan. I will live through it no matter the results, and I’ll move on to the next thing, whether it’s a celebration or more chemo. There will be many more scans with many more fearful “night befores” in my future as we keep an eye on the cancer to make sure it doesn’t return. But I can’t think about those today. I just have to get through this one for now.
2. Think about what you can do in this moment. I’ll have to wait until tomorrow night or possibly even Tuesday morning to hear the results of the scan. I’ll have lots of waiting for results in the future, too. If I waste too much time worrying about these scans and the results, I will miss out on a lot of the good stuff that is my life, like the fact that when I get home from the scan tomorrow, I get to hang out with Jackson and maybe do some fingerpainting. That is the good stuff.
3. You are way stronger than you think you are. Two extra rounds of chemo? Please. I got this.
4. Hudson is always with you. Yes. I changed my profile picture on Facebook to the photo below tonight. It is the first time my profile picture has featured a photo of Jackson that did not also have Hudson in it (one of my side-by-sides). My observant friend Melynn remembered me saying long ago that I dreaded such a moment. And I have. And I thought about it before I posted this photo. But it felt like the right picture for right now. One of the three most precious loves of my life is sitting in my lap. My (purple) hair has thinned to the point that I just feel prettier wearing a scarf. Today is only the second day I’ve worn one. And the scarf is teal (I purposely bought it because it reminds me of Hudson). And I am wearing my Hudson necklace, like I do every day. But as I said to Melynn, I have to remind myself that no matter what picture I post for my stupid Facebook profile picture, or what I do to try to make sure she is part of it, none of that matters, because she is always with me. Always.
This photo is so full of two of my superpowers: love and hope. I share it with you tonight, because you are my other superpower. My community. And tonight, I need your love and your hope again. Thank you.
Tomorrow I have a PET scan to determine whether or not I’ve had a complete response to chemotherapy after the first two cycles. If the scan is clear, then I only have to complete two more cycles (4 more treatments) of chemo in order to “mop up” any cancer cells that may not be visible on the scan. If the scan shows any remaining cancer cells, then I have to do two more rounds to achieve a complete response, then an additional two rounds of “mopping up” treatments, for a total of 8 more treatments.
The first scenario means that my final treatment will be on August 14, two weeks before classes start at my new job. It means that I can start teaching this fall. It means that I will no longer be in treatment the following month when I complete my triathlon with TEAM STRONGER. It means, in essence, that I am cured.
The second scenario is by no means the end of the world, or even a worst-case scenario, but it means two additional months of chemo, which I dread terribly, even though I have been incredibly fortunate in tolerating it so well. It means that while I will be able to start working this fall, I will be mostly working on projects from home rather than teaching, because my immune system would just be too much at risk in a law school where stressed-out students (especially the first-years) come to class even when they are practically dying because they fear missing anything. It means that I will still be in treatment by the time of the race, which will be OK (at least I think I’ll still be able to do it), but obviously not ideal. It means, of course, that I am not yet cured. Again, none of this is a worst-case scenario—it does not mean I won’t ultimately be cured. It will just mean that it will take more chemo than we’d hoped to get there.
Knowing what so many other cancer patients have to endure, many of whom can’t even hope to be cured, only to stay alive longer, it feels incredibly selfish to even be worrying about this. Four more rounds of tolerable chemo instead of two is just really not that bad.
But oh, how I want it to be only two. Oh, how I want to be cured already. Oh, how I want to get this disease behind me and get back to living a life worthy of my sweet Hudson’s memory.
Tomorrow is a big day. I am incredibly anxious about it. So in addition to my superpowers (and some Ativan, according to my PA), I need to remember my race tips from back before I started chemo:
1. Take one buoy at a time. I just have to get through this one scan. I will live through it no matter the results, and I’ll move on to the next thing, whether it’s a celebration or more chemo. There will be many more scans with many more fearful “night befores” in my future as we keep an eye on the cancer to make sure it doesn’t return. But I can’t think about those today. I just have to get through this one for now.
2. Think about what you can do in this moment. I’ll have to wait until tomorrow night or possibly even Tuesday morning to hear the results of the scan. I’ll have lots of waiting for results in the future, too. If I waste too much time worrying about these scans and the results, I will miss out on a lot of the good stuff that is my life, like the fact that when I get home from the scan tomorrow, I get to hang out with Jackson and maybe do some fingerpainting. That is the good stuff.
3. You are way stronger than you think you are. Two extra rounds of chemo? Please. I got this.
4. Hudson is always with you. Yes. I changed my profile picture on Facebook to the photo below tonight. It is the first time my profile picture has featured a photo of Jackson that did not also have Hudson in it (one of my side-by-sides). My observant friend Melynn remembered me saying long ago that I dreaded such a moment. And I have. And I thought about it before I posted this photo. But it felt like the right picture for right now. One of the three most precious loves of my life is sitting in my lap. My (purple) hair has thinned to the point that I just feel prettier wearing a scarf. Today is only the second day I’ve worn one. And the scarf is teal (I purposely bought it because it reminds me of Hudson). And I am wearing my Hudson necklace, like I do every day. But as I said to Melynn, I have to remind myself that no matter what picture I post for my stupid Facebook profile picture, or what I do to try to make sure she is part of it, none of that matters, because she is always with me. Always.
This photo is so full of two of my superpowers: love and hope. I share it with you tonight, because you are my other superpower. My community. And tonight, I need your love and your hope again. Thank you.
Saturday, June 30, 2012
On Superpowers
Thank you all so very much for all the incredibly loving and supportive responses to Sunday’s post. I told one friend that the danger of Blogger Mobile is that it allows me to kind of throw my thoughts and feelings up here the moment I’m having them, whereas when I sit down to the computer, it’s usually after some time to mull on my thoughts and feelings and try to get some perspective on them. Of course, this is the gift that writing (and your responses—our “conversation,” as it were) gives me. The process of writing, and of reading your responses, helps me understand my own thoughts and feelings better—it has done so from the very beginning, in those dark days after Hudson died, and it has continued to be such a gift to me during this most recent experience with cancer.
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.
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
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