Up and Down Days

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

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

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

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

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

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

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

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. 

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.

(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.

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

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.

What’s The Score?

I really lost count. I think the race counted as about 1000 points for me, so who knows where we are now? But I scored a few more this week. 

As you know, I started chemo on Tuesday. The day passed without a lot of fanfare. We arrived to check in at 8AM and were sent directly to the third floor, where the infusion clinic is. (This is after two more people, probably the seventh and eighth persons total at this point, got confused by my “I Give Cancer the Bird” t-shirt. Maybe I should just write in the word “bird”—the little yellow bird does look at bit like a chick, but really, what the heck would “I Give Cancer the Chick” mean anyway?). The check-in desk at the infusion clinic is set against a huge photographic mural of some low-lying swampy area in North Carolina, with cypress trees growing out of the water and framed by blooming dogwoods and azaleas. I’m telling you, the new cancer hospital is gorgeous. If you have to have cancer, it’s a nice place to have to spend a lot of time. I gave my name at the infusion check-in and the woman’s face lit up like it was Christmas. “Oh, it’s your first day, isn’t it?!” Why, yes it is, and I hadn’t anticipated being treated like a celebrity, but OK. She explained what the regular process would be when I checked in, told me that I’m allowed one support person in the back (this was a little disappointing, as I’d imagined bringing several members of my posse at once on at least a few occasions…), that we can eat or drink whatever we want back there, and so on.  (And then two nurses standing behind the desk both looked at my shirt and got it immediately—maybe you just have to be down with the oncology hipsters to get it.)

Courtesy of stupidcancer.org

A kind nurse named Mary took Ed and me back into the infusion center, which is basically divided into dozens of wide 4-chair unit pods with walls that go only about halfway to the ceiling, so you can see the three people in your pod (arranged in a square) and you can also see over the wall to the person behind you in the next pod over, giving the feeling of a pretty big open space divided up into smaller spaces, kind of like an office with cubicles. Each 4-chair pod is usually attended by one infusion nurse, and each chair in the pod has its own IV pole, vital signs equipment, TV overhead, and collection of magazines. We were told before we went in that we had to turn our phones to airplane mode because something about the frequency of the wireless phones can interfere with the pumps delivering the drugs (although I’m not sure how much they enforce this rule, since the guy catty-corner from me spent half the day saying, “Hello? Hello?” into his phone to a person trying to get the other person to hear him). Mary did a little mini-lesson about my port, explaining how they would access and de-access it for each treatment and telling me that I could get a prescription for EMLA cream (topical lidocaine) to use 45 minutes before each treatment to numb up the skin for the needle stick. She said I could put the cream on at home and then cover it with a little Press-N-Seal to keep it from getting on my clothes. I told her I was already well-versed with Press-N-Seal! After all the needle sticks I’ve had, I don’t know that I really need numbed skin, but you know what, I’ll take it anyway. 

I settled in a little bit and took out all the paraphernalia I’d brought with me. I had framed photos of both babies, which we set on the counter on my left. I had my iPad and laptop, my own cushy pillow from home, and the camera to take a few photos. On the advice of several folks who’d done this before me, I’d worn a tank top under my t-shirt so my port would be easy to access, and then I brought a zip-up sweatshirt to keep my warm without disturbing all the tubing. I’d also brought along a giant bag of Jolly Ranchers, also on the advice of veterans, to suck on during the pushes of the medications and the flushes of saline, which can apparently taste nasty. 

The next nurse to introduce herself got a bit of a surprise. She came up, told me her name was Cheryl and that she’d be my nurse today, and just as she asked me to verify my name and birthdate, I caught a glimpse of the keychain hanging around her neck and immediately burst into tears.

Not only was it a turtle, but I bought the exact same keychain when I was pregnant with Hudson, after we’d decided to call her the Turtle. I bought the same keychain for Ed this past Christmas. We both carry this keychain with us everywhere now. The nurse was understandably taken aback, and I had to put my hand on her arm right away and say, “It’s OK… I’ll explain as soon as I can get my breath.” It was honestly one of the most astonishing things that has happened to me since Hudson died. There have definitely been times when I felt her presence through one thing or another—dandelions, sea birds, certain songs on the radio—but this was one of those times where even the most skeptical of skeptics that lives somewhere in my mind could not help but be mind-boggled. It was my very first day of chemo. There were probably two dozen nurses on infusion duty that morning and she was mine. And not only was she wearing a turtle keychain, she was wearing HUDSON’S turtle keychain. It took me a very long time to get myself together enough to even explain to her what had set me off. For the rest of the day, I kept shaking my head and smiling in utter disbelief.

Once all the shock of that wore off, we had to get down to business. Cheryl had to get my port ready to access for the first time, and in the process, she opened up this super-sterile package of materials. I sort of laughed about it and said, “You know, I’ve been washing this thing with some gauze and kitchen soap at home, right?” And she laughed, too, and said, “Yes, and that is just fine.” I asked her if they’d have to dress it while I was there getting the infusions, and she said yes, but when I explained to her my problems with the Tegaderm, she said she could easily find some other solution, and that after I went home that day, I didn’t even need to dress it anymore, just wash it in the shower and wait for the Steri-strips to fall off. Music to my ears. When she removed the makeshift dressing I’d done that morning and started rinsing the site with Betadine, I thought I was going to scream—my skin was still so raw from the day before (it still looks pretty fried today, too—still healing up from being shredded by the Tegaderm). She tried really hard just to keep the rinse on the Steri-strips themselves. (Really, she bent over backward the entire day to make me comfortable—I really think that any person who purposely associates herself with cancer patients just has to be a different and special kind of person.) She gently peeled off two of the Steri-strips, which burned, too, but that’s because the incision itself is still a little raw, and then cleaned underneath them. She brought over another nurse to spray some numbing spray on there before sticking the needle access in. This didn’t really work, but it did distract me enough that the stick was over before I was able to really howl about it. I am pretty sure Ed can vouch for the fact that I was squinting my eyes and gritting my teeth through most of this process, between the burning skin, the stinging incision, and the needle stick into already sensitive territory. Yowza. But then it was over and she fixed a nice, comfortable dressing over it and told me immediately that it was working just like it should.

She then explained a little bit about what would happen the rest of the day and it became clear that we were not getting out of there in 3-4 hours like we thought (maybe next time). The first thing they have to do each time is draw my blood and send it next door for a stat workup, mostly to see how my white blood cells, red blood cells, and platelets are doing. Assuming that all of these numbers are OK (and this workup can take 30 minutes or more, just depending on how busy the lab is), THEN the nurse can send my pharmacy orders down to the pharmacy so that they can mix up my chemotherapy drugs. The mixing and delivery can take up to an hour more, during which we just get to sit there and do nothing. On this first day, we had a variety of folks come talk to us and tell us about nutrition during chemo, what this particular chemo regimen will do, what the side effects are like and how to manage them, and I even got a special visit from my man, John Strader, the PA who performed the world’s easiest bone marrow biopsy, and also from my oncologist. It was good to see both of them, since it seemed like it had been ages since I’d seen them for the first time, even though that appointment was only three weeks before (a whole lot happened in those three weeks, huh?). During all this time, they also do a lot of flushing and pumping saline through the IV. On top of all the water I was trying to drink, I had to go to the bathroom four or five times during the 6 hours we were there. Cheryl also brought me my pre-meds: several tablets each of Zofran (an anti-nausea medication) and Decadron (a steroid that is also good for nausea). I downed them all with a swig of water and grimaced at their terrible taste. 

Here are some photos of me sitting around, waiting on the dumb old drugs.

My favorite, with my babies

Once the drugs finally got delivered, then Cheryl had to do a test dose of the bleomycin (the “B” drug in the ABVD), because sometimes people have allergic reactions to it. So she had to push a test dose of that first, after which we had to wait an hour before she could push the rest of it. But thankfully, she was able to do the other three drugs in the meantime. Of course, I was sitting there thinking the whole time, “How will I know if I’m having an allergic reaction? Does my chest feel a little warm right now?” I was fine, of course, and she kept on with the rest of the drugs. One of the pharmacists who’d visited with us while we were waiting for the drugs had told me that one way to prevent mouth sores from the chemo is to suck on ice while the drugs are being delivered. But I was thinking, “Wait, though, I have to suck on my candy while the drugs are being delivered! What am I supposed to do?!” Serious problems, I have, you see. I kept telling Cheryl to tell me when I needed to put my watermelon Jolly Rancher in—I wanted to be prepared. And ultimately, I tried to suck on a piece of ice and a Jolly Rancher at the same time. It was a very dissatisfying combination, but if the drugs tasted bad, at least I didn’t notice that part. The first drug is adriamycin, and it is administered as a push through a syringe. It looks like bright red fruit punch, which is a little disconcerting but also kind of cool, and it makes your urine pink for a day afterwards, which is totally bizarre. (Cheryl told me one guy had come in once drinking blue Gatorade hoping for purple urine—she was like, “Umm…”) We had to skip the bleo for now, so then came the vinblastine, which is also pushed in a syringe. And when I say pushed, I mean that the nurse has to sit there for about 15 minutes and push a tiny fraction of the medication at a time. Clearly, they do not have the same addiction to their smartphones that I do. Finally came the dacarbazine, which hangs in a bag and has to drip in over the course of an hour. It was not until I went to the bathroom with the dacarbazine hanging on my IV pole that I saw the stickers all over the bag of medicine that said, “DANGER! HAZARDOUS! HIGH-RISK DRUGS!” Only then did I realize why Cheryl was wearing so much protective gear when pushing all the crap into my port—it wasn’t to protect me—it was to protect her. Nice. And these DANGEROUS! HAZARDOUS! HIGH-RISK DRUGS! are just being pushed right into a giant vein directly into my heart. Lovely. Oh, well, what the hell. If they’re going to kill the cancer and keep the cancer from killing me, HAZARDOUS! be damned. Do your thing, drugs.

Once the dacarbazine was done dripping, the test time for the bleo had long passed, so she was able to give me the full dose of that as well. In between each of the pushes, they also do a flush, where they flush the drug through with some saline. 

Finally the last flush was done. Cheryl was on lunch break, so another nurse, Patty (with whom I exchanged stories of loss—she wears a necklace honoring her late husband), deaccessed me, slapped a bandaid on my port and sent me on my way. Frankly, aside from the turtle keychain incident, the whole day was so anticlimactic. Not that there’s anything wrong with that. 

Then all there was to do was go home and wait and see what happened. I felt fine, with the exception of being tired from being up early and all the sitting around and waiting. Jackson was napping when I got home, so I got on the phone and called some voters (Tuesday was Election Day here in North Carolina and I was calling people asking them to vote against the same-sex marriage amendment on the ballot. We lost. It was awful. But marriage equality is coming and we will all just redouble our efforts.) until he woke up. And once he did, we played some awesome Peek-A-Boo-Hide-And-Seek (you know, the kind where you hide somewhere and the baby tries to chase you and you peek out from the other side and surprise them—yeah, it’s rocking fun, especially with an almost-one-year-old). I felt fine the rest of the day and all day yesterday and all day today. I still feel fine, although my mouth is starting to feel just a touch funny for the first time—I imagine it is the beginning of some mouth sores.

It has been kind of hard waiting around for the side effects to kick in. I’ve said several times that it’s like waiting to go into labor the first time—I have no idea what to expect or when, how hard it will be, how long it will go on. Nothing to go on. I can read about other people’s experiences, but everyone is different. So I just keep trying to remember my Race Rule #2: Think about what I can do in this moment. And all I can do in this moment is enjoy it. The weather was so beautiful today that Jackson, Bess, and I went over to the dog park and playground at Southern Village and soaked up some rays and did some swinging. I reached my fingers up to my neck only to discover that my tumors are already shrinking—they are still there and still noticeable, but they are not protruding as much nor are they as firm as they were before. The doctor had told me to expect noticeable changes within a few days, but I did not believe him. Because it is unbelievable.

So much has been happening that I was shocked to look down at my watch to see today’s date. May 10. It had escaped me that today is May 10. Two years ago today is the day that I took Hudson to the emergency room and she was diagnosed with bacterial meningitis. I started thinking about it and realized that May 8/May 9 two years ago was when she first woke up with a fever. It was the beginning of the end of her life. May 8 of this year was when I first started treatment for my cancer—it was the beginning of the beginning of the rest of my life. The parallels are not lost on me. It is still so unfair that she is gone and I get to stay, that I get to fight and she did not, that she is not here helping “babysit” her little brother while Mommy is fighting the bad cooties. 

But it steels my resolve. I get to fight. And fight I will. For Hudson. And for me. 

Ready (or Not), Set, Go

Finally, three months after I first felt a swollen lymph node on the right side of my neck, almost six weeks after I was diagnosed with Hodgkin’s lymphoma, after selling one house and buying another, moving to North Carolina, and completing an Olympic distance triathlon, it is finally time to face the music. At 8 AM tomorrow, I start chemotherapy.

For all the time leading up to last weekend’s race, I could almost pretend that I did not have cancer. As long as I had the race to look forward to, the cancer was just another thing to deal with at some point in the future. As soon as the race was over, reality set in and I had to face returning home to be a cancer patient. 

It was not easy. Maybe it was all the hormones I was shooting into myself for the embryo freezing process, or the poorly timed and poorly worded message I received from someone right after we landed back in Raleigh, or the bad stick I got at the hospital an hour later getting my blood drawn. Maybe it was all of those things and more, but I cried at the drop of a hat just about that whole day. After my appointment at the hospital, Ed, Dad, Jackson, and I had lunch in the hospital cafeteria. I just lost it right there in the middle of the dining room and Ed leaned over and put his arm around me and said, “I’m sorry you had to come home and be a cancer patient.” 

The next morning, I reported back to the hospital to get my port placed. The procedure itself was pretty easy—they used conscious sedation for it, so I was “awake” but totally loopy and mostly unaware of what was happening. I felt some pressure now and then, but I really don’t remember much else except thinking, “Am I supposed to be awake?” The recovery from that procedure was much worse than after the biopsy, though (when I had full-on general anesthesia). I felt so groggy from the drugs and as soon as we got home, I laid down on the couch and fell asleep for a couple of hours (as compared after the biopsy, when I felt great). And when I woke up, I was in a fair amount of pain. They make two incisions for the port placement, one in the chest, where the port itself is placed, and one a few inches higher, just under the collarbone, where they thread the catheter into a giant vein into the heart. Both were very sore every time I moved (and if I thought I used my neck muscles a lot, it was nothing compared to how often I use my chest muscles—basically any time I move my arm). And unlike the biopsy, this time, I hadn’t received any meds—my discharge instructions said to call if I couldn’t control the pain with my “regular home meds.” Really? OUCH! So I stuck it out with over-the-counter stuff until bedtime, when I just took some Percocet leftover from the biopsy. 

Even worse was the realization that I was again on lifting restrictions for at least a week. So no lifting, scooping, grabbing up my little guy for the entire final week before I started chemo. I was so pissed off when I realized this. There was no reason to get the port placed this week—we made the appointment because I was originally planning to start chemo that same day. But then we decided to do the egg harvesting, which required us to put chemo off for one more week, but I just left the port appointment as is, not thinking about the fact that I wouldn’t be able to lift him or swim in the pool with him during the last week I got with him before becoming a cancer patient. I could have waited and had it placed right before starting chemo. Argh. I will say, though, that it was uncomfortable enough at night that I was ultimately glad that the pain would already be behind me by the time I started chemo.

And then came the dressing changes. Because the port mechanism goes directly into the heart, it is critical to keep it extremely clean until it heals over completely (in about 2 weeks). I left the hospital with sterile gauze and Tegaderm over the two small wounds (which are closed with stitches and Steri-strips), with instructions not to touch it for the first two days, and then to replace the gauze and Tegaderm every day thereafter. If you’ve never seen Tegaderm, it’s kind of like a sterile version of the stickiest Saran Wrap in the world. It adheres to the skin and basically seals everything out. The problem is that it sticks so well, it peels a layer of skin off when you remove it. Imagine trying to take off the stickiest Band-Aid in the world, and you will see what I mean. And there’s no ripping it off, either, especially when it covers 12 square inches of skin. I did OK for the first several days, but when I went to change it this morning, my skin all around the incision sites was just as raw as if I had second degree burns. It stung so bad that it brought me to tears and I knew I could not put the stuff back on again today. I called the nurse and asked what I should do—she said that plain old paper tape would be OK as long as I kept the wounds covered and dry. I couldn’t find the paper tape, so I did some Googling and learned that some folks had success with Press-N-Seal plastic wrap, and what do you think I walked out of the house with this morning? Gauze covered by Press-N-Seal. I MacGyvered that hell out of that dressing, thank you very much. Screw cancer. Anyway, the nurses will have to look at it tomorrow when they access my port, so hopefully they can give me a better solution for the next several days until the skin is completely healed over. Here’s a photo of the two incisions on the third day after the surgery—it still looks the same now, but I have no idea what it looks like under the Steri-strips. And you can see already where the Tegaderm was starting to leave its marks. Once everything is healed over, it will look like I have a triangular-shaped lump under my skin. Weird triangles under the skin, turning radioactive for hours at a time—having cancer is a bit like being an alien.

I spent the rest of last week trying to unpack as much as I could of the stuff we can use while staying at Dad’s house until our renovations are done (not until the end of the year, at the earliest, I think). Mostly clothes, toiletries, kitchen goodies, and the like. And every other day, I went in for monitoring at the hospital as they tracked the growth of my ovaries. Each trip to the hospital meant an ultrasound (of the now-infamous transvaginal kind—although I definitely believe no woman should have to endure that before having an abortion, it was also the least bothersome of pretty much anything that has happened to me so far as a cancer patient) and another blood draw. All the needle sticks made me gladder than ever that I’d decided to get the port, even though I’ve hated dealing with the port site all week. Finally, on Friday, the fertility docs said I was ready for my trigger shot (remember that I’d been giving myself three different shots every night for the past two weeks—my heart really goes out to women who have to do this multiple IVF cycles in a row—it absolutely stinks), which I gave myself on Friday night. This shot triggers the ovaries to release the eggs that have been growing so that the docs can go in and retrieve them. That procedure took place Sunday morning, exactly 35 hours after the trigger shot (seriously, the science behind IVF is absolutely astonishing). Another conscious sedation deal, and the weird part about this one was that I DON’T really remember being awake much, but I DO remember several points where I cried out in pain. (I won’t gross you out with the details of this procedure—you can look it up if you want.) Thankfully, I haven’t had much pain after the procedure—I just felt crampy and bloated. But once again, I came home, crawled into bed, and slept for three hours while the sedation meds wore off. Boy, even though general anesthesia is more dangerous and requires a breathing tube, I’d really almost prefer it to the conscious sedation. But in the end, hopefully all of that craziness will be worth it. We had a fair number of eggs fertilize (8 out of 14, not all of which were mature), although we have to wait a few more days to see how many of the embryos make it to the freezing stage. Science is truly amazing, y’all.  

Also on the agenda was my pre-chemo hairdo. In the vast majority of cases, folks taking ABVD chemo lose their hair. There are exceptions, of course, but I’d rather have low expectations, prepare for the worst, and be pleasantly surprised than go into it thinking I’ll be one of the lucky few who get to keep their hair. So I decided I would go ahead and cut most of it off ahead of time. I did it for a few reasons, I think. One, I’ve read too many disconcerting stories about people who run their fingers through their hair one day and it just starts pulling out in clumps. No thanks, especially with a busy baby boy who is constantly pulling at my hair. I’d really rather not look down and see a big fistful of my hair in his mouth. Also, I figured I’d try a short do again (I had one about 10 years ago) to see if I liked it, knowing that it will be gone in few weeks anyway. And finally, I think mentally it seems a little easier to go piecemeal—chop it all off first and get used to that before going completely bald. I’m really not all that attached to my hair (I spend about 5 seconds on it every day with a quick comb-through and maybe, just maybe a little bit of product, but I almost always leave the house with it wet), and it will grow back, so the idea of being bald doesn’t bother me all that much. But I still figure it will be slightly less shocking to go from super-short to bald than from long to bald. Here are the before and after photos:

Still haven’t figured out the wig and scarf thing yet. The cancer hospital has a class called “Look Good, Feel Better” once a month—the May class is the day before my second treatment, so right around the time my hair will start to fall out. They have loaner wigs and teach tricks with makeup (doubt I’ll be doing much of that, but you never know), so maybe I’ll learn some good stuff just in time. 

As far as the baldness goes, it looks like once I lose the hair, it will be a while before I get it back. I mentioned in an earlier post that I was still deciding on what course of treatment to pursue: chemo+radiation or chemo+clinical trial. Ultimately, I decided I wasn’t comfortable with the risks of either. Any radiation would involve at least a small amount of breast and lung tissue, even if it were mostly concentrated on the nodes in my neck region, greatly increasing my chances of breast or lung cancer 10 or 20 years from now.  And the risk, even as tiny as it is, of suffering a rapidly degenerative and usually fatal neurological disease as a result of the clinical trial regimen was still too much of a risk for me. Perhaps if I were ten years younger and had no kids, the lure of only two months of chemo and a very low-risk clinical trial to avoid radiation would be worth it. But quite frankly, no risk of leaving Jackson and Ed within the next six months is worth it to me. Particularly when there is a tried-and-true cure for Hodgkin’s. So I talked to the doctor about doing chemo only, and he said it’s definitely a viable option. He sent me a study that was just released that found the overall 12-year survival rates (the max length of the study’s follow-up period) for people with my very low risk profile to be 98% for both those who did ABVD only and who did ABVD+radiation. I was sold. The only downside is that it means I’ll have to do at least 4 rounds of chemo (before, we thought it would be only 2) and possibly 6. But again, I’ll take 6 months of feeling not-so-hot if it means I’ll be cured and will live a very long time. In some ways, it was a very hard decision, but in some ways, it was a no brainer.

So tomorrow, it begins. I have some idea of what to expect from the day itself and for the next two weeks until the next treatment, but it can really vary from person to person. At a minimum, I imagine I will feel a bit like I have the flu for the next 4-6 months, with a wide variation between good days and bad days. From everything I’ve heard, I’ll have a lot more good days than bad days, so I’m optimistic that I can still have a really fun summer with Jackson. 

After the race, I wrote about how determined I was to finish the run without walking, in part because I was trying to prove to myself that I had the internal fortitude to handle what is in store for me the next several months. The more I thought about the race, the more it became a metaphor to me for making it through my cancer treatment. I remember the night before the race, one of my coaches mentioned that although the swim course looked scary, the buoys were about 100 meters apart, and that we should just think about the swim in 100-meter increments. All we had to do was make it to the next buoy. And that’s exactly what I did—I just swam from buoy to buoy, concentrating only on making it to the next one, and not thinking about having to make it all the way through the swim course at once. Coach Ted said that in every triathlon, something is going to go wrong, and instead of panic about it, all you can do is think about what you can do in that moment. That advice came in really handy on the bike when I realized I hadn’t really prepared my nutrition strategy to account for coming out of the long swim. I had to rethink the strategy midstream, and ended up taking one gel right at the beginning, and then splitting the second one into two halves during the second two-thirds of the bike course. And then there was the run, which I knew before the race even began would be nothing but a test of my will. And it taught me that I have more guts and more mental strength than I realized, even after everything else that I have been through.   

And through the whole race, of course, there was Hudson—in my One Good Thing bracelet, written on my arm in black ink, smiling that giant grin in images that flashed through my head, in the dozens of seabirds that made their way through my race path, in the little girl at the end of the race, grinning and wearing Hudson’s bumblebee dress. She was with me all along, and she’ll be with me through this, too.  

So a little recap: 

1.  Take one buoy at a time. 
2.  Think about what you can do in this moment. 
3.  You are way stronger than you think you are.
4.  Hudson is always with you. 

To remind me of all of this, I’m taking my St. Anthony’s Triathlon water bottle with me to chemo tomorrow.

I continue to be grateful beyond words for all the love, care, and support that keep flowing our way. The universe may have given us a ridiculous amount to carry, but it sure gave us a lot of shoulders to help us carry it. 

Bring it on, chemo. And get out of the way, cancer—I’m about to run right by you. 

Bubbles for Our Girl

It is May again. A month of extreme sorrow as we mark yet another year without our sweet Hudson. A month of extreme joy as we mark Jackson’s first year on the planet with us. 

In a twist that I don’t know whether to describe as beautiful or cruel or both, the anniversary of Hudson’s death falls on Mother’s Day this year. I will also be five days into my first chemotherapy treatment, and I have no idea how I’ll be feeling. 

But I know that no matter what, I will look forward to one thing, something we’ve been looking forward to since last May 13: blowing bubbles for our sweet Hudson. Last year’s celebration at the Arboretum, and the bubble celebrations of Hudson’s life all over the world, were such an incredible testament to the power of our precious girl’s spirit. As I mentioned last year after seeing all the photos of bubbles blown in Hudson’s memory, I imagine each one carrying just a tiny bit of the joy and love she brought to all of our lives out into the world to someone who needs it, much as I imagine the same thing whenever I see a dandelion blowing in the wind. 

And while we are so sad that we will not be able to visit Hudson’s bench in the Dogwood Collection at the National Arboretum on this second anniversary, we know that all who visit there that day and every day will carry a little bit of her spirit out with them, too, whether they know it or not.   

As we did last year, we would love to invite anyone, big or small, to join us in blowing bubbles in Hudson’s memory anytime on Sunday, May 13. A lovely way to celebrate Mother’s Day, too, I would think. And if you are able to take photos and share them with us, we’d love to see them and will try to post all the photos here on the blog soon thereafter. You can either email the photos to me or share them on the Bubbles for Hudson Facebook page. 

Oh, how we miss her, but we are so grateful both for our precious memories with her and for all the love that continues to spread through the world because she was with us for a sweet and all-too-short-time. 

The Race

In spite of everything—the Hodgkin’s diagnosis, the interrupted training because of my surgical biopsy and bone marrow biopsy, the crazy travel back and forth from DC to NC during the last month before the race, the move to NC five days before the race, the cold I caught four days before the race, the last-minute threat that I might not be able to race because of the stupid hormone injections—in spite of it all, I raced in the St. Anthony’s Triathlon on Sunday. And I finished. And not only did I finish, I met my one goal for the race: I didn’t walk during the run. I ran the whole way—a very slow run, indeed, but I did run. Altogether, my time was only a minute off of my time in my only other Olympic distance triathlon, the one I did with Team in Training in 2005. Seven years, two pregnancies, and one cancer diagnosis later, I’m only a minute off? I’m pretty happy with that (even though my swim time in the 2005 race was long because of a very long run to transition, so when you shave that off, I’m probably more like a five minutes off of the 2005 time. But still.). When I saw Ed as I came out of transition onto the run course, I ran up to him and said, “Guess what? I have cancer!” I could barely believe it.

It was such a fantastic weekend—I really could almost forget that I have cancer. “The race” had been out there in the distance for so long, and after the diagnosis, it was like I became manically obsessed with completing it no matter what. When the IVF nurse emailed me four days beforehand and said the doctors were concerned about me racing with the drugs I am taking (they make my ovaries swell, which in turn puts me at risk for ovarian torsion, where the ovaries twist on themselves and cut off their own blood supply—the risk is increased with strenuous activity, but no one mentioned this to me at the beginning of the cycle), I completely lost it. It somehow felt even worse than when I was first diagnosed. For the first time, I felt really beaten down and unsure of how much more I could take. It seemed like every time I got past one hurdle, another one popped up in front of me. I was feeling really done. What was the point in trying to stay so positive if it wasn’t making any difference?

But a long conversation with the reproductive endocrinologist the next morning convinced me that the risks were very low, and I knew that I would regret forever not doing the race, so off to Florida we went. The best part of the weekend (other than finishing the race without walking) was finally having a chance to spend some time with my teammates. It was so difficult to do during the season—with a nursing baby, I was always trying to get back home to nurse or pump after every group practice, and I could never get away to join the team for evening happy hours and fundraisers. So it was awesome to finally get a chance to see them in regular clothes, eat a few meals together, and share some nervous energy as Sunday morning approached. It made me sad that I hadn’t been able to spend more time with them during our long months of training. Saturday night’s “Inspiration Dinner” was special—all the Team in Training participants and their families from all over the country met and ate together in one of the hotel ballrooms, where we listened to a young Hodgkin’s survivor (who is now a TNT triathlon alum many times over) tell us about why what we were doing was so important. Of course, I already had rare perspective about this very thing. At one point, the event director asked everyone who was a survivor of a blood cancer or currently in treatment to stand up and be recognized as honored heroes—as awful as it is to be diagnosed with cancer, I truly did feel honored to be in that group. Afterwards, at a team meeting for our chapter, I finally got to thank my teammates in person for everything they were doing to fight blood cancers, for everything that they’d done and continued to do for me and people like me all over the country. I felt so grateful for them and privileged to be racing with them.

Our Sunday morning team meeting came early (4:30AM!), but thanks to my incredible swim coach, Caroline, who gave up her room so that I could sleep in a bed by myself the night before the race (instead of risking being up half the night if Jackson decided to wake up), I had gotten close to six hours of sleep. Those next two and a half hours practically flew by as we walked the long walk to the race area, got body-marked, and set up our transition areas. By the time all of this was done, the sun still hadn’t risen. The water temperature was 76-something, so the race was wetsuit-legal, but after my open water swim in my wetsuit with the team on Friday afternoon, I had decided I wasn’t going to wear mine—it felt too tight around the neck and made it harder for me to breathe. We made our way over to the swim start, where I found Ed, Jackson, and Ed’s folks, who had flown down to cheer me on and visit some family in the area. I was feeling incredibly nervous, if not downright scared, about the swim. I don’t know why—I knew I’d feel better once I was out of the water and on the bike, but 1500 meters just seemed so much longer when it was strung out from buoy to buoy across open water than it ever did just swimming laps in the pool, when you know you have a wall to touch every 25 yards. Before I knew it, it was time for my wave to start at 7:05. This was a very early start time. My wave started just after the pros and elites—in most triathlons, the fastest groups usually go first so that those people don’t have to pass so many slower folks on the course, but for some reason, this race was organized differently. Originally, our whole team registered in age groups, which would have meant that I would not start until 8:20, with the women 35-39. But when I found out that three of my friends on the team had switched to the Athena category (for women 150+ pounds) just to get the early start time at 7:05, I wanted to switch, too. At the time, I was underweight—the training and the stress of the last several months had me at my lightest weight since Hudson died—but I just crossed my fingers that I’d be able to “make weight” at check-in. To be on the safe side, I drank two quarts of water before the weigh-in, and between that and wearing my clothes and shoes, I had no problem. This was a very good thing, because I knew that the heat would likely be one of my biggest obstacles in finishing the run without walking, so the earlier I could get off the course, the better off I’d be. Plus, I really wanted to start with my friends and have some chance of seeing them out on the course.

In any event, after the pros and elites had shot off through the swim course, and one other wave for people raising money for certain charities, it was our turn. Athenas and women 60+ (I’m telling you, the organization of this race was crazy) gathered in our hot pink caps in the staging area for the swim start. I was with my teammates and friends Laura, Kim, and Ali, all of whom had been so good to me in so many ways during the season and particularly since the diagnosis. We hugged and wished each other good luck and waded out into the water to wait for the horn. By the time I got out to the starting buoys, I didn’t feel nervous anymore. The water was cold but not too cold—I’d made the right decision on the wetsuit. The course seemed long, but now I could see every buoy and I knew that I would just take it one buoy at a time like my coaches had reminded us the night before. The horn sounded and we were off—I started at my regular slow and steady pace, sighting on one orange buoy after another, always surprised when I reached the next one faster than I’d expected. It was a bit frenzied at the beginning, with bodies swimming all over each other—I got thwacked in the head multiple times—but eventually, I had some water to myself. We swam parallel to the shore for a while and then turned away from the shore. At this point, not only did it start to get choppy, but I was also starting to get passed by the age group that started behind us (this is why you should send the fastest groups out first, but that ship had already sailed). I was fighting the waves sloshing over my head and trying not to get submerged by all the swimmers coming from behind. I had only one tiny moment where I started to feel a little overwhelmed, so I just rolled onto my back and looked at the sky for about three seconds, took a deep breath, relaxed, turned back over, and started swimming again. Unfortunately, the waves stayed with us for the rest of the swim course, so I just had to keep plowing ahead and trying not to feel panicky. Finally, the last buoy and the exit stairs were in front of me. I was happy to get out of the water, but I felt good about the swim— even though I hadn’t swum particularly fast, I had stayed relaxed and in control (most of the time, at least). I climbed the stairs out of the water with the hordes of other people and started running back to the transition area. I heard Ed call my name from somewhere behind me and turned around just in time to see him waving at me. I also caught a glimpse of my swim coach screaming my name and waving. I waved at both of them enthusiastically—I was feeling great.

I trotted back into the transition area, where I probably could have been a little faster. I was especially concerned with making sure I had sprayed enough sunscreen back on to replace what I washed off in the water. (Who knows? Maybe I could have beaten my Chicago time if I hadn’t been so worried about the sunscreen!) I ran my bike out of transition where I saw Ed again—he must have sprinted from the swim finish over to the bike out to catch me as I headed out. The bike was long but mostly flat with a few very slight grades (the kind that you think are flat and so you’re wondering why you are having to pedal harder to go the same speed). It also took us through some beautiful spots, including past a gorgeous lake full of sea birds of all kinds. My legs were tired, and I was definitely feeling the several long bikes I missed during April. I decided not to push myself too hard because I really wanted to save something for the run (not for speed, of course, but just to be able to finish without walking)—as a result, my bike was my worst leg of the race (whereas last time, in 2005, it was my best). My plan for fuel also got thrown off a little, because we’d never practiced a long swim before the bike, so I hadn’t been anticipating needing some fuel at the beginning of the bike. I’d practiced taking a gel at the 8- and 16-mile points, which had worked well during practices, but when I felt myself needing some food towards the beginning of the bike, I worried about taking too much in and then stitching up on the run. So everything was just a little bit off, and I just had to go with it. The bike course is where you really notice how silly it is to let slower groups start in front of faster groups. Guys on $5000 and $10,000 bikes and wearing aerodynamic helmets, really serious triathletes who compete in the age group categories, were whizzing by me constantly. I don’t mind getting passed (definitely used to that!), but I felt bad that they had to pass me at all.

My legs were definitely feeling all the missed training when I got off the bike. Whereas during lots of our March bricks (bike-to-run practices), my legs felt fresh and fairly fast off the bike, they felt heavy and tight during the race. I practically shuffled out of the transition area and prepared myself for a rough run. I was hoping that at some point, I’d be able to loosen up and relax into a longer, faster stride, but I just never got there. It was also starting to warm up considerably by this point (about 10AM). My dear Ed was waiting for me as I came out of the transition area, and I went over and gave him a high five, and then as I rounded the first turn towards our agreed-upon cheering spot, he had sprinted over there and was waiting with Jackson, and his folks—they were all holding big signs that said, “Go Mandy!” on which Ed had drawn pictures of turtles, penguins, and Tar Heels. It was awesome. And a little farther out on the run course, I saw another sign he had planted in the grass that said, “Go Mommy!” with a sweet turtle drawn on it. The run was long and very, very hard. I had told Ed that morning that if I made it through without walking, it would be by sheer force of my will, and I was right. At each water station (around every mile marker or so), I grabbed two cups of water, inhaling some water from one and dumping the other over my head, groaning as I contemplated how many more miles I had to go. I tried to keep my head up, though, and still cheered whenever I passed or got passed by someone in purple (one of 225 fellow TNT participants in the race). There were so many moments when I wanted to stop, but I just kept saying to myself, “I did not come this far, I did not get over all these obstacles in order to race here today, just to quit running because it hurts.” I said it over and over and forced my legs to keep moving. The irony, of course, is that had I let myself walk a little bit, I might have been able to run a little faster in between, and it’s possible that my overall time would have been faster. As it was, I ran the whole way and still only beat my Chicago run time (where I walked quite a bit) by three minutes. But by that point, it wasn’t about speed for me. It was about not letting myself quit, about not giving up on my only goal for the race. It was about trying to prove something to myself, testing my own mettle as I prepared for cancer treatment. Somehow, I made it to the halfway point, and then to four miles, and then five (Ed had placed another sign somewhere near mile 5, but I missed it, likely because of my absolute concentration on not letting my legs come to a stop), and soon, the end was in sight. I just had to get there.

The last straightaway seemed to go on forever, and I couldn’t really see where the turn was to the finish. But at last, I reached it, and as I turned left to enter the lane into the finish, I saw my little Jackson sitting in his stroller holding up a sign in front of his face that said, “Go Mandy!” I could see him gnawing on the corner. It was too adorable. I was still a few hundred yards from the finish line and just kept making my legs go, although I didn’t have much left to make them go faster for a nice sprint to the finish. Ed ran most of the way with me, for which I will love him forever (well, I was already going to love him forever, but this was yet another mark in his favor). I crossed the finish line and stumbled to a walk, so grateful to be done. A race volunteer threw an ice-cold towel over my shoulders, and it felt amazing. Another person put some Gatorade in my hand, and yet another stopped me to put my finisher’s medal over my head. I remember giddily saying “Pin me!” to her. I was a little delirious. Ed met me on the other side of the finish and hugged me and then went to get his folks and Jackson. I wandered out of the finisher’s chute and started to head back over to the TNT tent to check in.

And then I was stopped in my tracks. There, a few feet away from me, was a chubby little girl, a toddler, wearing a green collared dress with tiny white polka dots, embroidered with little flowers and bumblebees. I recognized it instantly as one of many little two-piece Carter’s outfits I’d bought for Hudson at Costco her first summer, when she was between 6 and 9 months old. I couldn’t see if the little girl was wearing the matching bloomers, but I immediately saw them in my mind’s eye—they were the ones with the big yellow and pink bumblebee appliquéd across the bottom.

This wasn’t the only time I’d felt Hudson with me on the course. There were several points on both the bike and the run where I was feeling tired and low and discouraged, and all of a sudden a sea bird or several sea birds would fly by me or alight just in front of me—there were pelicans, gulls, egrets, and cormorants. At a few points, I almost had to laugh in disbelief at how pointed a message they seemed to be giving me to just keep going. I was so grateful each and every time to feel her presence in a tough moment, thinking back to our visit to the beach with her at the age of nine months, when she cooed a delighted “Ooooh! Ooooooh!” every time she saw birds fly by.

But it wasn’t until I saw this little girl wearing Hudson’s dress that all the emotion, the stress, the anticipation, the dread, and most importantly, the yearning for Hudson that I’d felt over the last few months came to a head. I burst into tears—I couldn’t help myself. I cried my way over to the TNT tent, got myself together enough to check in, and then sat down and cried some more. I wished Ed was there right at that moment, and I was so grateful when I saw him walking up with the rest of the family. He came over and put his arms around my shoulders where I was sitting and I just buried my head into his stomach and sobbed. I hadn’t realized how much I’d needed to do that until that moment.

I spent the next few hours waiting for teammates (who had started in later waves than I had) to arrive at the finish line and had so much fun cheering them in, along with everyone else wearing purple. Being a part of Team in Training is kind of like being a Tar Heel. It doesn’t matter where you are or whether you know each other or not—when you see a teammate, you cheer. You can’t help but get caught up in the camaraderie that you share just by virtue of the commitment you each made to fighting blood cancers and completing a really difficult endurance event. It’s just a great community to be part of.

Once it was all over, the reality of what comes next for me started to settle in, but that’s for another post.

As always, I am at a loss for words to thank everyone who supported me financially, emotionally, physically, and spiritually throughout this long training season and especially since my cancer diagnosis. On top of every other amazing aspect of having completed this race, I also raised $11,140 for the Leukemia and Lymphoma Society, putting me in the top ten fundraisers nationwide for the St. Anthony’s Triathlon. I remain ever in awe of the incredible capacity for human kindness and generosity that continues to reveal itself to me over and over in the acts, large and small, of people everywhere, both known and unknown to me. The triathlon may be over, but my real race has just begun, and I am so grateful to know that the same love and support will be there to carry me through my battle with cancer, too. Thank you all.

The National Capital Area Team!

Inspiration Dinner-Jackson was inspired by the video!

Pre-race breakfast

Heading over on race morning

Getting body-marked

Heading to the swim start

My boys in their turtle shirts

For Hudson

My TNT girls

The swim course

Athenas in hot pink!

Hitting the water

Coming out of the swim

Heading out on the bike (trying to hit my lap button)

At the beginning of the run

Between miles 5-6: I look way happier than I felt here

Cutest cheerleader ever

Final turn into the finish

Into the chute

Finisher!

With my biopsy scar.  SCREW CANCER!

Greatest cheer team on earth

My inspiration