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.
Sunday, May 27, 2012
Thursday, May 24, 2012
Happy First Birthday, Sweet Jackson
Jackson at one year
My dearest little boy:
Today is your first birthday, my sweet boy. Earlier today, I was feeling so tired from my treatment on Tuesday that I thought maybe I would wait until tomorrow to write this to you, but as I have learned the hardest way of all when we lost your sister Hudson, there may not always be a tomorrow, so I always have to make sure that you know you are loved today. It’s true that we can’t always live like we have no more days to spend together (although that could be fun in some ways, couldn’t it? Eating birthday cake every day and not just for birthdays?), but we also can’t live like we have endless numbers of days together, because we know that is not to be. There has to be a good middle ground in there somewhere. Although I hope we have many, many, many days together, until I am very, very old and you are old enough to be a grandpa, it is still so important that I always tell you how much I love you, because I don’t ever want a day, or a moment, to pass when you don’t feel that love.
And not only will I tell you all the time, like I do already, but I will show you, too. I will show you in little ways and big ways that you are loved every moment. I will always, always accept you for who you are. I only ever want you to be you, Jackson. I want you to be the best you that you can be, but I only ever want you to be you. And I want you to always know how much I enjoy you. I read something the other day that really spoke to me. It said that one of the most important things a parent can say to her child is, “I love to watch you play” (or read, or sing, or whatever it is that you decide to do). This particular mom shared how much she felt like this took the pressure off of her kids and allowed them to just enjoy their activities and not feel like they constantly have to do something new to please their parents. So I just want to say that to you now: I love to watch you play. Even though your dad and I are like all eager parents of a kid your age—we can’t wait for you to walk and talk and we love watching you do all your little tricks—we also try hard not to push you to do things you aren’t ready for, and most importantly, we try to make sure that you don’t have to please us in order to earn our love and respect. You earn our love and respect just by being our child. We love you and we respect you as your own person just because you are you, and that will never change.
I am nearly certain there will come times when you and I don’t like each other very much, times where you need your space and I don’t want to give it, or times where I have to be firm about something that you think is unnecessary, or lots of other situations where we just don’t see eye-to-eye. I don’t know anything about what it will be like to parent an older child, but having been an older child and teenager myself before, I remember what it was like to feel like I hated my mom. I always knew I didn’t really hate her, but it sure felt like it sometimes. And I’m sure you will feel that way one day, too. And I hope that when those times come, we can weather them without too many hurt feelings. I know it’s hard not to get our feelings hurt, especially when the other person is doing something that is really hard for us to understand or accept, but as I’ve told you before, the best that we can do when those kinds of times come is just try to explain our feelings and to listen and understand each other as well as we can. And in case I forget to tell you one day, I am sorry if I hurt your feelings. I don’t ever mean to. Ever.
It’s hard for me to explain to you just what you have meant to my world in the past year, Jackson. The last time I wrote to you, before you were born, I wanted so much for you to understand that it would never be your job to take your sister’s place or to fill her shoes. I felt so very sorry that you were being born into a world without a living big sister to help you figure out how all this craziness works out here, and I still feel so very sorry about that. It will never be right. She should be here now, getting ready to help decorate your birthday cupcakes and help you eat your penguin smash cake. I am just so sorry, for you and for all of us, that she isn’t here.
And I am sorry that even though it will never be your job to fill Hudson’s shoes, you were born into the world with an unfair burden just the same. We were all so very sad when you sister died—sometimes, it was hard to think we could ever be happy again. And then you came. And all of a sudden, so many of the places in our hearts and our lives that had been so very dark since she died began to feel light and warmth again. Your beautiful, loving little soul, so quick with a kiss or a snuzzle or a smile, has stretched its long tentacles into corners that we weren’t sure even existed anymore. And while our lives, yours, your dad’s, your grandparents, mine, will never be complete without our sweet Hudson, they are and will forever be filled with utter joy because you are in them. And for that, we just couldn’t be more grateful, dear boy.
It was an unfair burden for you to be born with, but my how well you have shouldered it. Every time my eyes fall on that sweet face, whenever I hear that precious grunt of pleasure from your mouth when you see something or someone you love, whenever you grab the sides of my face to hold me still for a kiss, whenever I watch that brow furrow in concentration as you try to figure something out, I burst with love and with gratitude, and I know as fully as any person can that although I have had to shoulder some terrible burdens of my own, I have also been blessed with some of the most wonderful gifts in the world.
You are one of those gifts, my dear Jackson. And I am eternally grateful. I love you, sweet one. Happy first birthday.
Love,
Mommy
Wednesday, May 23, 2012
Lately
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.
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.
Thursday, May 17, 2012
TEAM STRONGER: Sweetening the Pot
So I’ve already heard from several folks that they are registering with TNT for the Wilmington YMCA Triathlon or checking out TNT in their home states. Including my big sister, who is 46 years old and has never done a race of any kind in her life. I am incredibly excited about what I am going to call “TEAM STRONGER” and I hope even more of you will sign up!
In case you need some more inspiration, I’ve decided to have purple wristbands made that say “Screw Cancer/One Good Thing” to mail to anyone who signs up with TNT this summer. So if you decide to sign up and would like a bracelet, please send me an email (see sidebar) with your name and address and let me know which event you have signed up for (so I can tell everyone else!) and your address so I can send you a bracelet.
During my cancer treatment, I am taking a hiatus from my regular Hudson-teal toes and instead keeping them purple (the color for Hodgkin’s awareness and TNT). I think she’d be OK with that.
In case you need some more inspiration, I’ve decided to have purple wristbands made that say “Screw Cancer/One Good Thing” to mail to anyone who signs up with TNT this summer. So if you decide to sign up and would like a bracelet, please send me an email (see sidebar) with your name and address and let me know which event you have signed up for (so I can tell everyone else!) and your address so I can send you a bracelet.
During my cancer treatment, I am taking a hiatus from my regular Hudson-teal toes and instead keeping them purple (the color for Hodgkin’s awareness and TNT). I think she’d be OK with that.
(The toe ring, a turtle, of course, is a Mother’s Day gift from Jackson.
According to his card, all the cool moms are wearing them.)
Stronger
Watch this first if you haven’t already. I want you feeling really inspired before you read the rest. Because I am going to ask you to do something big.
(And sorry for the stupid ad.)
Now, Kelly Clarkson would not normally be my choice for inspirational music, but this time she (inadvertently), and these awesome kids on the hemoncology floor at Seattle Children’s Hospital (very intentionally) have hit the nail on the head. Just imagine these kids (and their parents and me) singing these words directly to their diseases as they battle to kick those diseases to the curb:
You know the bed feels warmer
Sleeping here alone
You know I dream in color
And do the things I want
You think you got the best of me
Think you’ve had the last laugh
Bet you think that everything good is gone
Think you left me broken down
Think that I’d come running back
Baby you don’t know me, cause you’re dead wrong
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter
Doesn’t mean I’m over cause you’re gone
What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
You heard that I was starting over with someone new
They told you I was moving on, over you
You didn’t think that I’d come back
I’d come back swinging
You try to break me, but you see
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter
Doesn’t mean I’m over cause you’re gone
What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
Thanks to you I got a new thing started
Thanks to you I’m not the broken-hearted
Thanks to you I’m finally thinking about me
You know in the end the day you left was just my beginning
In the end...
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter
Doesn’t mean I’m over cause you’re gone
What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
When I’m alone...
It may be cliché, clichés are clichés because they are true. What doesn’t kill us makes us stronger.
Feeling inspired yet? Good, because I’m about to ask you to do something big.
The first time I trained for a triathlon with Team in Training in 2005, I had no personal connection to the mission of the Leukemia and Lymphoma Society. I was training and fundraising in memory of my mom, who had died of pancreatic cancer. The second time I trained for a triathlon with Team in Training this past spring, I had no personal connection to the mission of LLS at the beginning. I was running in memory of Hudson and in honor of all children fighting blood cancers and their parents who are trying to save their lives.
This time, the connection is personal. This time, I am running for me and for all other people battling blood cancers right now who can’t train for triathlons.
You heard me right. I am going to train for another triathlon with Team in Training this summer, while I am still in treatment. Ed and I had already discussed the possibility that we might train to race as a relay at the Wilmington YMCA Sprint Triathlon in September, with him doing the swim, another friend doing the bike, and me doing the run. I figured training for a 5k would be pretty easy during chemo and would be a good way to keep myself motivated to exercise during treatment (vigorous cardio exercise has been shown to be very good for lymphoma patients in particular and is excellent in battling fatigue due to treatment). But then two things happened. First, my first week of chemo went incredibly well. I had hardly any symptoms at all except fatigue, and none that I could not manage very well with medication. And then I found out that Team in Training here in Raleigh is training for the Wilmington Sprint as part of its summer season.
I was sold. I decided I could manage to train to do a full sprint on my own, given that it is only half the distance of the Olympic race I ran last month (it’s a 1500m swim, but it’s with a current, so it’s the equivalent of about 1000m, a 12mi bike, and a 5k run). And I wanted to take a leadership role in TNT for the first time. So I emailed the triathlon coordinator to volunteer as a mentor. As it turns out, they already have two mentors for the season, but asked me if I would like to be an Honored Teammate for the team, and I agreed immediately. Honored Teammates are members of the team, either training or not, who are personally battling or have already survived a blood cancer. The Honored Teammate’s job is to remind participants about the real-life impact that their training and fundraising is having on real patients right now. Seemed like the perfect job for me.
So there you have it. I am training for another TNT triathlon this summer. The best part is that the race is on September 22. If all goes well with my treatment, I will have my last chemo infusion on August 14 and will be fully finished with treatment as of August 28. Which means that this race will be one giant celebration of being CURED OF CANCER! How much STRONGER can I get than that?!
So I said at the beginning that I was going to ask you to do something big after you watched the video. I hope you’re feeling inspired, because I want to ask you to consider doing an event with Team in Training yourself. If you live in the Triangle, I REALLY want you to consider doing the Wilmington Sprint Triathlon with me. There are other Triangle summer season events, including marathons/half marathons, century rides, and strenuous hike adventure programs, and it would be great if you signed up for any of those, too, but I am really hoping to recruit a few friends (including Ed) as teammates to train with me for this summer season. I can promise you that even if you think you can’t swim a lap, you will be able to swim a mile by the time the season is over. If you think you can’t bike a mile, you will be able to bike 20 by September. If you think you can’t run 10 feet, you’ll be able to run a 5k by the end of summer. And not only will you be able to do all of those things, you’ll be able to do them in a row. I’ve seen it happen. TNT provides you with coaching, mentoring, fundraising support of all kinds—they make it so easy for you and all you have to do is put in the time and the miles. I know the time isn’t easy. Really, I do. I was lucky enough (and will be again this summer) to not be working while training, so I don’t mean to poo poo those of you who have real work commitments. But I have also seen people who work full time AND have kids train for these races. And a sprint distance won’t require quite as MUCH time as training for an Olympic distance would—you don’t need to be able to run for an hour, so you won’t have to spend too much time in training trying to do that. But if you don’t want to commit to three different sports, definitely consider one of the other events that involves only one. And if you’ve ALREADY participated in endurance sports, then this is a no-brainer for you. Just do it! But this time, train with an awesome group of people and raise money for an awesome group of people and cause at the same time. And if you think you are too old (you know who you are and yes, I am looking at you), YOU ARE NOT! I got passed by women in their 60s and 70s out there on the race course. You are not too old. And if you think there’s no way you can raise $2000 or $3000, just trust me: you can. And TNT will make sure you can.
And let me just throw this last little bit in there: if I can do this right now, you can.
Basically what I’m saying is that any reason you can think of not to do it, I can think of a solution (well, except for childcare, which I know is also a huge impediment—hopefully if you have kids, you also have a really supportive partner like mine who is willing to carry a little extra load for just a few months). And as your Honored Teammate, it will be my job to help keep you motivated during the season so that you don’t end up scratching your head going, “Why I am doing this?” I will be there to tell you why.
You CAN do it. And I really hope you will. And if you do, once you come to the end, you won’t even believe what you’ve done. The feeling of real accomplishment is unlike many others you will experience in your life. And on top of that, you will have raised a couple thousand dollars (or more if you set your sights high!) to help people like me, and more importantly, to help kids like those in that video. And their parents, who spend every waking and sleeping moment wondering if their children will make it to their next birthdays. Even though I am doing this race for me, I am still, still doing it for them, too.
So if you think you are game, or if you at least just want to learn more, do one of a few things.
1. Go to an interest meeting and learn more about TNT and the summer training programs and events. In the Triangle, here are the dates:
* Sat, May 19th at 10:30am at Caribou Coffee in Raleigh
* Tues, May 22nd at 7:00pm at REI Raleigh in North Hills
* Thurs, May 24th at 6:30pm at Tyler's Tap Room in Durham
* Tuesday, May 29th at 7:00pm at Fleet Feet Carrboro in Carrboro
* KickOff Celebration - Saturday, June 9th at 9:30am at the Athletic Performance Center in
Directions to all these meetings, as well as info about meetings in the Triad, Charlotte, and Wilmington, can be found here.
If you are not in North Carolina, you can visit TNT’s website and put in your zip code to learn about the program in your area. And if there is no program in your area, or you really need flexibility, you can do the Flex option, where you can train on your own, but with total support from coaching staff virtually—they will plan an individualized training program for you and check in with you weekly on your progress, and then you will meet your teammates on event weekend.
2. Register NOW! If I’ve already convinced you, then just sign up here. If you sign up before Friday, you can use coupon code “ncfallfortnt” to receive 50% off your registration fee. After Friday it is still only $75 and this goes directly toward your fundraising minimum.
3. Share this blog with anyone and everyone you know and encourage them to do it, too.
If you have any doubts about Team in Training as a fundraising organization, I encourage you to read about its history and about where the money goes. Since its inception in 1988, Team in Training athletes have raised more than 1.2 BILLION DOLLARS to support research, patient education, and patient services for people with blood cancers. That number alone should tell you that this is an organization worth fundraising for.
And if I haven’t convinced you to participate (insert Charlie Brown teacher “wah-woh“ here), then you know I am going to ask you to give some money. I haven’t set up my fundraising page yet, but I have another way for you to give right now that is very personal to my own cancer treatment right this very minute. My fabulous PA, John Strader (the one who gave me a nearly pain-free bone marrow biopsy, remember?), is a candidate for the Leukemia and Lymphoma Society’s Man & Woman of the Year program. This is a fundraising competition where community leaders commit to using their personal networks to raise as much money as possible for LLS in a short ten-week period. John is himself a survivor of non-Hodgkin’s lymphoma, has run 18 marathons, at least half of which were after he was cured of cancer, and is just an all-around phenomenal person and medical professional. Basically, you can vote for him by donating money to his MWOY campaign here, and if he “wins” by raising the most money for LLS, some portion of the dollars raised come directly back to the UNC Cancer Hospital (i.e., back to me as patient!).
So there. I did it. A big ask. A really big ask, I know. But I hope you will think about it. If you need some more time to decide, just watch the video again. Another 3 minutes and 35 seconds ought to help you make up your mind.
What doesn’t kill them will make them stronger. What doesn’t kill me will make me stronger (don’t I know it?). What doesn’t kill you (and I promise TNT won’t kill you) will make you stronger.
If you don't do it, you may regret it. But if you do, you will never regret it.
Let’s all be stronger. Join me and TNT this summer.
(And sorry for the stupid ad.)
Now, Kelly Clarkson would not normally be my choice for inspirational music, but this time she (inadvertently), and these awesome kids on the hemoncology floor at Seattle Children’s Hospital (very intentionally) have hit the nail on the head. Just imagine these kids (and their parents and me) singing these words directly to their diseases as they battle to kick those diseases to the curb:
You know the bed feels warmer
Sleeping here alone
You know I dream in color
And do the things I want
You think you got the best of me
Think you’ve had the last laugh
Bet you think that everything good is gone
Think you left me broken down
Think that I’d come running back
Baby you don’t know me, cause you’re dead wrong
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter
Doesn’t mean I’m over cause you’re gone
What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
You heard that I was starting over with someone new
They told you I was moving on, over you
You didn’t think that I’d come back
I’d come back swinging
You try to break me, but you see
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter
Doesn’t mean I’m over cause you’re gone
What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
Thanks to you I got a new thing started
Thanks to you I’m not the broken-hearted
Thanks to you I’m finally thinking about me
You know in the end the day you left was just my beginning
In the end...
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter
Doesn’t mean I’m over cause you’re gone
What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
When I’m alone...
It may be cliché, clichés are clichés because they are true. What doesn’t kill us makes us stronger.
Feeling inspired yet? Good, because I’m about to ask you to do something big.
The first time I trained for a triathlon with Team in Training in 2005, I had no personal connection to the mission of the Leukemia and Lymphoma Society. I was training and fundraising in memory of my mom, who had died of pancreatic cancer. The second time I trained for a triathlon with Team in Training this past spring, I had no personal connection to the mission of LLS at the beginning. I was running in memory of Hudson and in honor of all children fighting blood cancers and their parents who are trying to save their lives.
This time, the connection is personal. This time, I am running for me and for all other people battling blood cancers right now who can’t train for triathlons.
You heard me right. I am going to train for another triathlon with Team in Training this summer, while I am still in treatment. Ed and I had already discussed the possibility that we might train to race as a relay at the Wilmington YMCA Sprint Triathlon in September, with him doing the swim, another friend doing the bike, and me doing the run. I figured training for a 5k would be pretty easy during chemo and would be a good way to keep myself motivated to exercise during treatment (vigorous cardio exercise has been shown to be very good for lymphoma patients in particular and is excellent in battling fatigue due to treatment). But then two things happened. First, my first week of chemo went incredibly well. I had hardly any symptoms at all except fatigue, and none that I could not manage very well with medication. And then I found out that Team in Training here in Raleigh is training for the Wilmington Sprint as part of its summer season.
I was sold. I decided I could manage to train to do a full sprint on my own, given that it is only half the distance of the Olympic race I ran last month (it’s a 1500m swim, but it’s with a current, so it’s the equivalent of about 1000m, a 12mi bike, and a 5k run). And I wanted to take a leadership role in TNT for the first time. So I emailed the triathlon coordinator to volunteer as a mentor. As it turns out, they already have two mentors for the season, but asked me if I would like to be an Honored Teammate for the team, and I agreed immediately. Honored Teammates are members of the team, either training or not, who are personally battling or have already survived a blood cancer. The Honored Teammate’s job is to remind participants about the real-life impact that their training and fundraising is having on real patients right now. Seemed like the perfect job for me.
So there you have it. I am training for another TNT triathlon this summer. The best part is that the race is on September 22. If all goes well with my treatment, I will have my last chemo infusion on August 14 and will be fully finished with treatment as of August 28. Which means that this race will be one giant celebration of being CURED OF CANCER! How much STRONGER can I get than that?!
So I said at the beginning that I was going to ask you to do something big after you watched the video. I hope you’re feeling inspired, because I want to ask you to consider doing an event with Team in Training yourself. If you live in the Triangle, I REALLY want you to consider doing the Wilmington Sprint Triathlon with me. There are other Triangle summer season events, including marathons/half marathons, century rides, and strenuous hike adventure programs, and it would be great if you signed up for any of those, too, but I am really hoping to recruit a few friends (including Ed) as teammates to train with me for this summer season. I can promise you that even if you think you can’t swim a lap, you will be able to swim a mile by the time the season is over. If you think you can’t bike a mile, you will be able to bike 20 by September. If you think you can’t run 10 feet, you’ll be able to run a 5k by the end of summer. And not only will you be able to do all of those things, you’ll be able to do them in a row. I’ve seen it happen. TNT provides you with coaching, mentoring, fundraising support of all kinds—they make it so easy for you and all you have to do is put in the time and the miles. I know the time isn’t easy. Really, I do. I was lucky enough (and will be again this summer) to not be working while training, so I don’t mean to poo poo those of you who have real work commitments. But I have also seen people who work full time AND have kids train for these races. And a sprint distance won’t require quite as MUCH time as training for an Olympic distance would—you don’t need to be able to run for an hour, so you won’t have to spend too much time in training trying to do that. But if you don’t want to commit to three different sports, definitely consider one of the other events that involves only one. And if you’ve ALREADY participated in endurance sports, then this is a no-brainer for you. Just do it! But this time, train with an awesome group of people and raise money for an awesome group of people and cause at the same time. And if you think you are too old (you know who you are and yes, I am looking at you), YOU ARE NOT! I got passed by women in their 60s and 70s out there on the race course. You are not too old. And if you think there’s no way you can raise $2000 or $3000, just trust me: you can. And TNT will make sure you can.
And let me just throw this last little bit in there: if I can do this right now, you can.
Basically what I’m saying is that any reason you can think of not to do it, I can think of a solution (well, except for childcare, which I know is also a huge impediment—hopefully if you have kids, you also have a really supportive partner like mine who is willing to carry a little extra load for just a few months). And as your Honored Teammate, it will be my job to help keep you motivated during the season so that you don’t end up scratching your head going, “Why I am doing this?” I will be there to tell you why.
You CAN do it. And I really hope you will. And if you do, once you come to the end, you won’t even believe what you’ve done. The feeling of real accomplishment is unlike many others you will experience in your life. And on top of that, you will have raised a couple thousand dollars (or more if you set your sights high!) to help people like me, and more importantly, to help kids like those in that video. And their parents, who spend every waking and sleeping moment wondering if their children will make it to their next birthdays. Even though I am doing this race for me, I am still, still doing it for them, too.
So if you think you are game, or if you at least just want to learn more, do one of a few things.
1. Go to an interest meeting and learn more about TNT and the summer training programs and events. In the Triangle, here are the dates:
* Sat, May 19th at 10:30am at Caribou Coffee in Raleigh
* Tues, May 22nd at 7:00pm at REI Raleigh in North Hills
* Thurs, May 24th at 6:30pm at Tyler's Tap Room in Durham
* Tuesday, May 29th at 7:00pm at Fleet Feet Carrboro in Carrboro
* KickOff Celebration - Saturday, June 9th at 9:30am at the Athletic Performance Center in
Directions to all these meetings, as well as info about meetings in the Triad, Charlotte, and Wilmington, can be found here.
If you are not in North Carolina, you can visit TNT’s website and put in your zip code to learn about the program in your area. And if there is no program in your area, or you really need flexibility, you can do the Flex option, where you can train on your own, but with total support from coaching staff virtually—they will plan an individualized training program for you and check in with you weekly on your progress, and then you will meet your teammates on event weekend.
2. Register NOW! If I’ve already convinced you, then just sign up here. If you sign up before Friday, you can use coupon code “ncfallfortnt” to receive 50% off your registration fee. After Friday it is still only $75 and this goes directly toward your fundraising minimum.
3. Share this blog with anyone and everyone you know and encourage them to do it, too.
If you have any doubts about Team in Training as a fundraising organization, I encourage you to read about its history and about where the money goes. Since its inception in 1988, Team in Training athletes have raised more than 1.2 BILLION DOLLARS to support research, patient education, and patient services for people with blood cancers. That number alone should tell you that this is an organization worth fundraising for.
And if I haven’t convinced you to participate (insert Charlie Brown teacher “wah-woh“ here), then you know I am going to ask you to give some money. I haven’t set up my fundraising page yet, but I have another way for you to give right now that is very personal to my own cancer treatment right this very minute. My fabulous PA, John Strader (the one who gave me a nearly pain-free bone marrow biopsy, remember?), is a candidate for the Leukemia and Lymphoma Society’s Man & Woman of the Year program. This is a fundraising competition where community leaders commit to using their personal networks to raise as much money as possible for LLS in a short ten-week period. John is himself a survivor of non-Hodgkin’s lymphoma, has run 18 marathons, at least half of which were after he was cured of cancer, and is just an all-around phenomenal person and medical professional. Basically, you can vote for him by donating money to his MWOY campaign here, and if he “wins” by raising the most money for LLS, some portion of the dollars raised come directly back to the UNC Cancer Hospital (i.e., back to me as patient!).
So there. I did it. A big ask. A really big ask, I know. But I hope you will think about it. If you need some more time to decide, just watch the video again. Another 3 minutes and 35 seconds ought to help you make up your mind.
What doesn’t kill them will make them stronger. What doesn’t kill me will make me stronger (don’t I know it?). What doesn’t kill you (and I promise TNT won’t kill you) will make you stronger.
If you don't do it, you may regret it. But if you do, you will never regret it.
Let’s all be stronger. Join me and TNT this summer.
Sunday, May 13, 2012
Two Years: A Letter to My Girl
Oh, my girl. I have been dreading sitting down and writing this letter to you. Not because I don’t love sharing this special time with you—I love it very much. When I write to you, I almost get to feel like you are here with me, that I am laying down in the bed with you, stroking your hair or rubbing your back as you are trying to fall asleep while I tell you how much I love you.
No, the reason I have been dreading sitting down to write it is because you are not here. I don’t get to lay in your bed curled up around you stroking your beautiful hair and face or scratching your back like my mommy used to do for me when I was a little girl. Instead, all I get to do is write you letters on these sad anniversaries and other days and hope that somehow, somewhere, you can still feel my love, still feel the caress of my hand tracing the slope of that precious little nose or drawing an “H” on your back for you to guess which letter. All I can do is write these letters and hope that by sharing them with others, everyone else will come to know how wonderful you were so that your spirit can keep growing and spreading love in the world. Because I know that’s what you would have done if you were still here. So as much as I love talking to you in this way, it is also an all-too-vivid reminder that you are not here, and that is so very hard.
Today, we have survived without you for two whole years, my precious girl. Two years. So much longer than we had you with us. How very wrong that is. And today, fatefully, is also Mother’s Day, not only the day that is set aside for us to celebrate each other and what we mean to each other as mommy and daughter, but terribly, also the day that you first got sick two years ago, before we knew how very sick you were. Although I know I will never be able to fully let go of the trauma associated with this day, the passage of time and the birth of your amazing little brother do help take out some of the sting, making it a little easier to remember how incredibly fortunate I am to be your mommy, how incredibly fortunate I am to have carried you inside my body for nine months, to mother you here on this earth for 17 months and 12 days, and to carry you in my heart for the rest of my life. As time passes, what everyone had hoped for me has begun to happen—with each day, I am able to remember more and more of the sweetness of how wonderful it was to have you with us. And while it does not take away proportionally from the pain of how awful it is to be without you, it does help. I am so glad to be able to talk about you and remember you every day, all the time, to share you with others without feeling stabbed in the heart over and over again. I still feel stabbed, like I am feeling right now, but I don’t feel it every time I think of you, and that has to be good. And I think it has to be a gift from you.
Just as you were so generous in life, my sweet Hudson, so are you incredibly generous in death. All the time, little pieces of the world make themselves known to me, and I just feel that they are you, letting me know that you are there, that you are here with me. Your Aunt Jess sends me texts every couple of weeks telling me about our special little deer friends who visit in her backyard, or a rainbow she saw on the way home from work, or a song she heard just at the right time, and I always text back and say, “She is always there when we need her.” Just this morning, in fact, she sent me a text wishing me a peaceful day and hoping I would have some quiet time with you. Then she went and turned on her Pandora radio and was just starting to think about how Pandora’s downfall is that you can’t pick a particular song at any given time. And yet, as soon as the music started, the version of “Somewhere Over the Rainbow” that we all think of as “yours” came on. Was that you, sweet girl? We love to believe it was. Last week, when I started my first chemotherapy, my nurse was wearing your keychain—your keychain, my dear one. Was that you? I almost think it had to be. The week before that, when I had just come home from my race and was feeling really down about facing my cancer treatment, I was heading out to one of my many doctor’s appointments. Lots of times, I will turn on the radio, and I will think, “OK, if one of our songs comes on, then I will know it’s Hudson trying to tell me something.” It doesn’t ever work. Except that day, it did. I turned on the radio, feeling like I needed to hear from you, and “Under Pressure” by David Bowie and Queen was on—it was almost as if you knew that I needed to hear that particular song right then, so that I would know I would be OK, that the pressure would get better, that the enormous love that is present in my life, from you, from your daddy, from your brother, from our whole family and all the people out there in the world who love us—all that love would make it OK. And during the race itself, the beautiful sea birds who kept flying with me… was that you? I just have to believe it was, my sweet Hudson.
But here’s the thing, my dear girl. The most beautiful thing about it all. Even if those things are not “you” in the sense that somewhere in the realm beyond what we can see and know with our senses, you are pulling some strings to make these things be (your Aunt Jess and I joked one time that if our loved ones can pull so many such strings, why can’t you just come back and be with us?)—even if those things are not “you” in that way, they are still you. They are still you because it is because of you that I notice them. It is because of you that when I pass a dandelion or a field of dandelions, I stop and notice them and take in how dazzling they are, how beautiful a little weed can be. It is because of you that when one star shines brighter in the sky than all the rest, or the moon is particularly beautiful one night, I stop and notice it and appreciate how amazing it is. It is because of you that when the wind blows in just the right way, whispering through the trees and bringing a gentle breeze on a warm day, I stop and notice it and feel touched by it. It is because of you that when I hear a song that I really needed to hear, I feel lifted in love and grace, even when it is something as silly as “Dancing Queen” by Abba.
It is because of you, my sweetest, most glorious Hudson, that I can stare a life-threatening illness down in the face and still feel the exceptional beauty that surrounds me each and every day. It is because I get to be your mother that I also get to know how astoundingly precious every second of our lives is, even the seconds that terrify us as they bring us face-to-face with the reality of our deaths. As I have said so many times, I would trade all of this wisdom back in a heartbeat if it meant just one more day with you. But I know that is not to be. And so again, today, two years after we said goodbye to you, I am reminded of your lesson, and I weep with gratitude for the gift that you continue to be in my life every single moment of every single day. Thank you, again, for being my One Good Thing.
You are gone but you should not be. But, following your lead, I will cherish what is— that your dad’s and my lives, and so many others, are changed forever because you were in them. Your smile, joyful laugh, mischievous ways, sweet voice, and wise countenance are indelibly burned on my heart-- I would do anything to hear you say “Mama” just one more time. You are gone but you should not be. Thank you for helping me cherish what is. I love you.
I love you, my girl, my heart.
Love,
Mommy
No, the reason I have been dreading sitting down to write it is because you are not here. I don’t get to lay in your bed curled up around you stroking your beautiful hair and face or scratching your back like my mommy used to do for me when I was a little girl. Instead, all I get to do is write you letters on these sad anniversaries and other days and hope that somehow, somewhere, you can still feel my love, still feel the caress of my hand tracing the slope of that precious little nose or drawing an “H” on your back for you to guess which letter. All I can do is write these letters and hope that by sharing them with others, everyone else will come to know how wonderful you were so that your spirit can keep growing and spreading love in the world. Because I know that’s what you would have done if you were still here. So as much as I love talking to you in this way, it is also an all-too-vivid reminder that you are not here, and that is so very hard.
Today, we have survived without you for two whole years, my precious girl. Two years. So much longer than we had you with us. How very wrong that is. And today, fatefully, is also Mother’s Day, not only the day that is set aside for us to celebrate each other and what we mean to each other as mommy and daughter, but terribly, also the day that you first got sick two years ago, before we knew how very sick you were. Although I know I will never be able to fully let go of the trauma associated with this day, the passage of time and the birth of your amazing little brother do help take out some of the sting, making it a little easier to remember how incredibly fortunate I am to be your mommy, how incredibly fortunate I am to have carried you inside my body for nine months, to mother you here on this earth for 17 months and 12 days, and to carry you in my heart for the rest of my life. As time passes, what everyone had hoped for me has begun to happen—with each day, I am able to remember more and more of the sweetness of how wonderful it was to have you with us. And while it does not take away proportionally from the pain of how awful it is to be without you, it does help. I am so glad to be able to talk about you and remember you every day, all the time, to share you with others without feeling stabbed in the heart over and over again. I still feel stabbed, like I am feeling right now, but I don’t feel it every time I think of you, and that has to be good. And I think it has to be a gift from you.
Just as you were so generous in life, my sweet Hudson, so are you incredibly generous in death. All the time, little pieces of the world make themselves known to me, and I just feel that they are you, letting me know that you are there, that you are here with me. Your Aunt Jess sends me texts every couple of weeks telling me about our special little deer friends who visit in her backyard, or a rainbow she saw on the way home from work, or a song she heard just at the right time, and I always text back and say, “She is always there when we need her.” Just this morning, in fact, she sent me a text wishing me a peaceful day and hoping I would have some quiet time with you. Then she went and turned on her Pandora radio and was just starting to think about how Pandora’s downfall is that you can’t pick a particular song at any given time. And yet, as soon as the music started, the version of “Somewhere Over the Rainbow” that we all think of as “yours” came on. Was that you, sweet girl? We love to believe it was. Last week, when I started my first chemotherapy, my nurse was wearing your keychain—your keychain, my dear one. Was that you? I almost think it had to be. The week before that, when I had just come home from my race and was feeling really down about facing my cancer treatment, I was heading out to one of my many doctor’s appointments. Lots of times, I will turn on the radio, and I will think, “OK, if one of our songs comes on, then I will know it’s Hudson trying to tell me something.” It doesn’t ever work. Except that day, it did. I turned on the radio, feeling like I needed to hear from you, and “Under Pressure” by David Bowie and Queen was on—it was almost as if you knew that I needed to hear that particular song right then, so that I would know I would be OK, that the pressure would get better, that the enormous love that is present in my life, from you, from your daddy, from your brother, from our whole family and all the people out there in the world who love us—all that love would make it OK. And during the race itself, the beautiful sea birds who kept flying with me… was that you? I just have to believe it was, my sweet Hudson.
But here’s the thing, my dear girl. The most beautiful thing about it all. Even if those things are not “you” in the sense that somewhere in the realm beyond what we can see and know with our senses, you are pulling some strings to make these things be (your Aunt Jess and I joked one time that if our loved ones can pull so many such strings, why can’t you just come back and be with us?)—even if those things are not “you” in that way, they are still you. They are still you because it is because of you that I notice them. It is because of you that when I pass a dandelion or a field of dandelions, I stop and notice them and take in how dazzling they are, how beautiful a little weed can be. It is because of you that when one star shines brighter in the sky than all the rest, or the moon is particularly beautiful one night, I stop and notice it and appreciate how amazing it is. It is because of you that when the wind blows in just the right way, whispering through the trees and bringing a gentle breeze on a warm day, I stop and notice it and feel touched by it. It is because of you that when I hear a song that I really needed to hear, I feel lifted in love and grace, even when it is something as silly as “Dancing Queen” by Abba.
It is because of you, my sweetest, most glorious Hudson, that I can stare a life-threatening illness down in the face and still feel the exceptional beauty that surrounds me each and every day. It is because I get to be your mother that I also get to know how astoundingly precious every second of our lives is, even the seconds that terrify us as they bring us face-to-face with the reality of our deaths. As I have said so many times, I would trade all of this wisdom back in a heartbeat if it meant just one more day with you. But I know that is not to be. And so again, today, two years after we said goodbye to you, I am reminded of your lesson, and I weep with gratitude for the gift that you continue to be in my life every single moment of every single day. Thank you, again, for being my One Good Thing.
You are gone but you should not be. But, following your lead, I will cherish what is— that your dad’s and my lives, and so many others, are changed forever because you were in them. Your smile, joyful laugh, mischievous ways, sweet voice, and wise countenance are indelibly burned on my heart-- I would do anything to hear you say “Mama” just one more time. You are gone but you should not be. Thank you for helping me cherish what is. I love you.
I love you, my girl, my heart.
Love,
Mommy
Saturday, May 12, 2012
A Nearly Perfect Day
For someone who received her first chemotherapy treatment four days ago, I am living pretty good. Still no significant side effects, with the exception of some additional fatigue and a mildly sore mouth (imagine that raw feeling after having eaten one too many fireballs and you’ll get the gist of the feeling, but it doesn’t even bother me that much—I can only occasionally feel it when I am eating). The nausea meds I am taking (Compazine on a very regular schedule—i.e., I set my watch to remind myself every eight hours, including for 6:00AM—and Ativan at night only, mostly to help me sleep) must really be doing their job, because I’ve really only felt a wave or two of nausea at all, and honestly, I think it was because I didn’t have enough food in my stomach because I’ve been afraid to eat!
So I have been going about my business pretty much like normal with the exception of a few extra naps during the day, which I usually try to time with Jackson’s naps, so not only do I get some much-needed snoozing, I also get some much-needed snuggling. See exhibit A below:
Today truly was a nearly perfect day, certainly not one where I felt like a cancer patient. We got up early and went and had breakfast with friends at Weaver Street Market (a neighborhood co-op that is only 1 mile down the road from our eventual new house whenever it’s ready), watched our kids crawling and playing, and then went over to Ed’s sister’s house (also about a mile from our new house) so Ed could help her move some big limbs.
Then we went home for lunch and then took Jackson and Bess to Fearrington Village across the way from my dad’s house, where we wandered the nature path down to the goat paddy and fed several brand-new baby goats some yummy grasses and clover, just like we’d done with Hudson almost three years ago exactly, when she was about 5 months old.
After a leisurely hike along the trail a ways, we went back to the Village and stopped for a beer (Ed), a bottle (Jackson), and a Coke float (me). The weather was perfect—75 degrees, sunny, just a touch of humidity, no real mosquitoes yet. It was almost perfect.
Almost.
On our way out of the Village, a very kind older couple stopped us to coo over Jackson. The wife asked me how old he was, and I told her he would be one in just under two weeks.
“He’s ready for a little brother or sister!” her husband said jovially. His wife chided him a touch, knowing that this was a rather personal suggestion in any event, NOT knowing that he’d just dropped a giant emotional bomb.
“Yep! Yep!” I said, and beelined away from there as fast as I could. My mind was truly reeling. Was I really as upset as I thought I was? As it turned out, yes, yes, I was. I caught up to Ed, who’d dropped some things in the trash and blurted out what the elderly gentleman had said, and then punched my fist in the air as hard as I could and shouted, “YES! YES, HE IS!” realizing that part of me had actually wanted to punch that man in the face himself. And then I burst into tears.
In the span of a second after he said that Jackson was ready for a brother or sister, I thought, “HE ALREADY DOES HAVE A SISTER, GODDAMMIT! BUT HIS SISTER DIED, GODDAMMIT! AND I’M SUPPOSED TO BE PREGNANT RIGHT NOW, GODDAMMIT! BUT I HAVE CANCER, GODDAMMIT! SO JUST. SHUT. THE. FUCK. UP!”
Of course, I didn’t really want to punch the man in the face, nor did I really want to scream obscenities at him. Well, I did and I didn’t. He had no idea that what he was saying was so totally loaded or that it would make me seethe and burst out crying. He had no idea that my nearly perfect day was so completely and totally imperfect for the very reason that Jackson has no brother or sister or even one on the way. He had no idea that tomorrow, on Mother’s Day, we have to honor the second anniversary of Jackson’s sister’s death. He had no idea that I am 36 years old and have cancer. He just had no idea about anything.
On the way home, I composed a status post for Facebook. It said:
Would not have expected to spend this day hiking with my boys, feeding honeysuckle to baby goats, and sipping on a Coke float in the sun. How grateful am I today?
I started to cry as I finished it, feeling so grateful to be able to feel grateful even on such a totally imperfect day. And just as I hit “post,” Sound Opinions on NPR, which had been doing a show called “Songs About Mom,” began playing “This Woman’s Work,” by Kate Bush. And I was just overcome.
Give me these moments back. Give them back to me.
Give me that little kiss. Give me your hand.
I know you have a little life in you yet. I know you have a lot of strength left.
Yes. Yes. Yes to all of that.
So I have been going about my business pretty much like normal with the exception of a few extra naps during the day, which I usually try to time with Jackson’s naps, so not only do I get some much-needed snoozing, I also get some much-needed snuggling. See exhibit A below:
Today truly was a nearly perfect day, certainly not one where I felt like a cancer patient. We got up early and went and had breakfast with friends at Weaver Street Market (a neighborhood co-op that is only 1 mile down the road from our eventual new house whenever it’s ready), watched our kids crawling and playing, and then went over to Ed’s sister’s house (also about a mile from our new house) so Ed could help her move some big limbs.
Then we went home for lunch and then took Jackson and Bess to Fearrington Village across the way from my dad’s house, where we wandered the nature path down to the goat paddy and fed several brand-new baby goats some yummy grasses and clover, just like we’d done with Hudson almost three years ago exactly, when she was about 5 months old.
After a leisurely hike along the trail a ways, we went back to the Village and stopped for a beer (Ed), a bottle (Jackson), and a Coke float (me). The weather was perfect—75 degrees, sunny, just a touch of humidity, no real mosquitoes yet. It was almost perfect.
Almost.
On our way out of the Village, a very kind older couple stopped us to coo over Jackson. The wife asked me how old he was, and I told her he would be one in just under two weeks.
“He’s ready for a little brother or sister!” her husband said jovially. His wife chided him a touch, knowing that this was a rather personal suggestion in any event, NOT knowing that he’d just dropped a giant emotional bomb.
“Yep! Yep!” I said, and beelined away from there as fast as I could. My mind was truly reeling. Was I really as upset as I thought I was? As it turned out, yes, yes, I was. I caught up to Ed, who’d dropped some things in the trash and blurted out what the elderly gentleman had said, and then punched my fist in the air as hard as I could and shouted, “YES! YES, HE IS!” realizing that part of me had actually wanted to punch that man in the face himself. And then I burst into tears.
In the span of a second after he said that Jackson was ready for a brother or sister, I thought, “HE ALREADY DOES HAVE A SISTER, GODDAMMIT! BUT HIS SISTER DIED, GODDAMMIT! AND I’M SUPPOSED TO BE PREGNANT RIGHT NOW, GODDAMMIT! BUT I HAVE CANCER, GODDAMMIT! SO JUST. SHUT. THE. FUCK. UP!”
Of course, I didn’t really want to punch the man in the face, nor did I really want to scream obscenities at him. Well, I did and I didn’t. He had no idea that what he was saying was so totally loaded or that it would make me seethe and burst out crying. He had no idea that my nearly perfect day was so completely and totally imperfect for the very reason that Jackson has no brother or sister or even one on the way. He had no idea that tomorrow, on Mother’s Day, we have to honor the second anniversary of Jackson’s sister’s death. He had no idea that I am 36 years old and have cancer. He just had no idea about anything.
On the way home, I composed a status post for Facebook. It said:
Would not have expected to spend this day hiking with my boys, feeding honeysuckle to baby goats, and sipping on a Coke float in the sun. How grateful am I today?
I started to cry as I finished it, feeling so grateful to be able to feel grateful even on such a totally imperfect day. And just as I hit “post,” Sound Opinions on NPR, which had been doing a show called “Songs About Mom,” began playing “This Woman’s Work,” by Kate Bush. And I was just overcome.
Give me these moments back. Give them back to me.
Give me that little kiss. Give me your hand.
I know you have a little life in you yet. I know you have a lot of strength left.
Yes. Yes. Yes to all of that.
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