Notes From Supergirl

My Diary from the Trenches

Still Kickin’


I’ve taken a break for a couple of months and I just wanted to jump on to note a few things. I am now 1 year and 2 months post-transplant. I have not been to a doctor’s appointment for 4 full weeks! I have been switched to a monthly visit schedule and tomorrow will be my first time back this month. One of the beautiful things about this change is that I have so much more time to do things now that I’m not spending days driving back and forth from the hospital. Another truly beautiful thing is that I often forget about cancer. I seem to forget that it was so much a part of my life for so long. As much as I appreciate this, in a way, I also wish it wasn’t so easy to forget. I got my haircut the other day and hated the way that it came out. I went into an over-dramatic depression and crying fit because I was so disappointed with the way I looked. Yes, I was being a girl, but I had to keep telling myself that I should be glad just to have hair! Get over it! It’s moments like this that I find myself sinking into a period of self-loathing about my lack of appreciation for day to day life at times. The farther I get from my journey with cancer, the harder it is to remember some of the pain or the misery that I experienced. When I’m feeling sorry for myself over something silly like my hair or a pimple, I bring myself back by trying to remember a really bad day in the hospital. Usually it works.

I’ve noticed a lot of changes in my life in the past few weeks, which I am beginning to recognize as a sign I am healing and growing from the transplant. Physically, I have become much stronger, faster and have increased endurance. Things that I struggled with a few months ago seem a little easier. I have more energy and far less fatigue. I feel normal. I still notice things that remind me of my underlying differences. For example, I did a yoga class with lots of headstands and came home to notice petechia under my eyes. Petechia is when you see small, tiny dots of broken blood vessels which is a result of low platelets. I won’t deny that it triggered a little panic/anger episode, but I feel fairly confident that my platelets are just hanging at a low normal level and this is just something that is part of my life now. Of course, I do look forward to a little reassurance from a blood test tomorrow.

Elsewhere, this new “freedom” has left me in a state of uncertainty about what to do with my life now. My kids are in school full time and I am home with no medical concerns and long, beautiful, full days ahead. This leaves room for my career to now take center stage. It has, most certainly, been on the back burner for these past three years and a few years prior as I raised my young kids. I’m not quite sure where I want to be or what I want to be doing. I love my design work and plan to continue with that but I want to do something more. I feel it’s there and I just haven’t materialized it yet. I continually ponder the idea of a book and part of me thinks I should just start writing and see what happens. The other part of me wonders if it’s a waste of time. I guess, if nothing else, a book would ultimately be a story I could leave behind for my kids one day, even if never turned into anything else. There is no waste in that.

The last few weeks have also brought some sad news about different friends who are now facing their own health challenges. I want all of them to know that I am behind them all the way. They are all incredibly strong, beautiful women who I know will overcome what is in front of them.

Lastly, I wanted to share a little experiment that I am doing with myself this year. I have challenged myself to face a new fear each week. Fear is by far the biggest thing that holds me back in my life. Cancer shook quite a few fears but I still find myself paralyzed at times by fear of different things. It would take quite a lengthy post to elaborate on all of the things that I truly fear but I am able to to recognize them now which is a big step in getting over them. Some of these challenges are very personal and emotional, others may seem silly or minor. But here’s the thing – no matter how big or small a fear is, each time we overcome one, we feel empowered and stronger to tackle the next one. So I challenge you to try this for yourself. You may be amazed at the results!

Merry Christmas, Happy New Year and Happy 37th!


Today was a good day. As some of you heard (rather quickly from Facebook!), my biopsy results came back clear. I am in remission one year after my transplant and my chromosomes are normal. It was the greatest Christmas/New Years/Birthday gift I could have asked for and I am feeling immense relief and joy today as I savor in this news. I want to clarify that this does not necessarily mean that I am “cured” but simply that I am on a very good path right now. It will take a few years of remission before anyone would consider me cured. I do believe that day will come but for now I will enjoy every day for the gift that it is.

This is a huge period of transition for me. I will only have to go to the hospital once a month now and my life can really return to “normal.” I have many goals and dreams that I plan to focus on but I look at them in very different ways than I used to. With each aspiration, I consider what I really want to get out of each day. How do I want to feel when I go to sleep? Am I trying to accomplish something for the sake of accomplishment or does it really mean something to me or someone I care about? I know that one of my priorities is to find time to give back to others on this journey. In the past few weeks I have actually spoken to a couple of people who are either survivors or those just at the start of this process. The survivors inspire me and I want to inspire others to never give up. I want them to know it’s okay to question everything, feel like the universe has punched you in the face and want to roll into a ball and cry, but at the end of the day you must get up and fight. If you want to be here, you never give up.

I know it’s not nearly as easy as it sounds. I am heartbroken over the news that a friend of a friend of mine is in hospice in a terminal condition. I don’t have any doubt that she wanted to fight as hard as I did but wasn’t given the opportunity. When things like this happen, we wonder why? Why am I here? Why couldn’t she survive too? I don’t know why. But the only thing that I can take from this is that, as I always say, this horrible experience is a gift underneath the ugly surface. True or not, I choose to look at it that way because it motivates me to make something out of it. We all have bad things happen to us and we can either fall apart or use them to make us stronger, better people.

To completely shift course, I must thank Brian for buying me a Vitamix for Christmas! My green smoothies are about to get a lot smoother! I’ve been juicing almost daily for a couple of months now and I highly recommend it. I will admit that I may have turned my nose up to juicing a while ago but I do love how I feel after drinking my juices each day. I would like to think it’s also doing great things for my body. As speaking of great things, if anyone is looking for a terrific new cookbook featuring vegan/vegetarian food, I highly recommend Kris Carr’s Crazy Sexy Kitchen. I rave about Kris Carr all the time, but this cookbook is really terrific. I make recipes out of here almost daily and just add chicken or fish if I feel like it needs a little meat in it. The juices are great. Brian has even been making kale chips in the dehydrator!

As I close out this post, I just want to thank everyone who has loved, prayed for and supported me on this journey. There are big things to come and I wouldn’t be doing any of it had it not been for all of you helping to keep me afloat through the last 3 years. It has been a long road, but I believe it will have all been worth it in the end. For those just beginning their journey, look inside and you will find all that you need to beat this. Don’t be angry, be strong. Turn your fear into fight and trust that if there’s a will, there’s a way.

Happy new year! Bring on 2013!!!!

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No Hiding From Cancer


It’s been a couple of months since my last post and I wouldn’t even know where to begin as far as catching everyone up. I think about blogging all the time and never make the time to do it. I’ve let myself sink into a focus on work and productivity and less on the things that truly matter. It is a constant battle now – knowing that life is short and I should only focus on living in the moment versus feeling like I have all of these things to make up for that I missed over the last 3 years. I feel behind in my career, my skills, my production and as if I have things to catch up to. It’s ridiculous, I see that. Days like today bring it all into focus.

I’m fine, no bad news. I just had one of those days where I couldn’t escape cancer. There was really sad news from a friend about a mutual acquaintance who is in a dire situation. She is a lot like me – young and with two young kids. I thought about her all day today. I thought about her as I went to a doctor’s appointment in the same building where my mother was treated with cancer. Just going into that building makes my stomach turn. I know it is a good hospital but I feel like that is the place she went to die. I know that’s not true, but that’s how I feel. There were other small voices from cancer throughout the day but what threw me over the edge was a Facebook post from a leukemia survivor. He is 4 years in remission now and doing great. But someone who had a transplant at the same time he did relapsed last year, as well as another friend of his who was treated shortly after that. People ask me all the time what the success of my transplant means and I always say that it means that I’m here today. As far as what it means for tomorrow, I don’t know. Reading stories about people relapsing 3 years out from transplant is gut wrenching. They say that making it to 5 years is a sign of cure. I have four to go. And I’m realizing more than ever that I better make the most of every one of these days I am free from this horrid disease.

I got on here to blog because I needed to vent about all of this and I’m trying to suppress the urge to Google leukemia statistics. My life has been amazing – and NOTHING short of it – for the last few months. I feel alive, I feel healthy, I have energy, I feel NORMAL. I LOVE my life and everything about it. Yes, I still complain about my hair but it’s there and that’s a beautiful thing. I know how lucky I am and people who know cancer often remind me. I was lucky to be given more time.

I am nine days away from my transplant anniversary. I have been waiting for this day and I am so happy about that I cry every time I think of it. Of all the races I trained for and all the finish lines I envisioned crossing, this is by far one of the most important ones. I am so insanely giddy about Christmas this year and actually being home with my family that words cannot express the emotion of it all. This time last year I was packing my bags to go to the hospital and not knowing if I would be back for Christmas. So I savor this time. But I’m also feeling a great deal of anxiety about my upcoming biopsy. I haven’t had one since the spring. I know it SHOULD be okay, but you just never know. Living in ignorance is truly bliss sometimes.

Alright, I’m done with the negativity. I must talk about one of the best things that has happened in the last few months. My cousin Kenny and his awesome gal Lynn put together a fantastic event to celebrate the 10-year anniversary of their winery and donated the proceeds to Team Inspiration. Roseann and I went out to California, along with my dad and some great friends, to partake in the celebration. Their was skateboarding, there was wine making and drinking, great food and lots of merriment. At the end of it all they raised $10,000 for TI!!!!! That money will help fund the Cancer Walking and Exercise Program at the University of Maryland that will begin in January. Roseann and I are simply speechless and incredibly humbled by all of those. Most importantly, we are grateful. I cannot wait to walk the halls of the cancer unit with other patients that I hope to inspire to get out of bed and not let this horrid disease get them down. Thanks to Kenny and Lynn and their very generous friends, Roseann has great plans for 2013.

I must run. It’s time to decorate the house, cuddle with kids and watch Christmas movies. I hope to have good news to report in a couple of weeks. Stay tuned.

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The Fall


Fall has always been my favorite time of year. I know that New Year’s is supposed to be the time to kick-start changes and start fresh, but for me, I’ve always felt that way about September. I suppose it’s because that’s when school starts and I’ve always looked at that as an opportunity to redefine myself, to refocus and dive into the year ahead. I got married in September, on the 22nd, the day of the Autumnal Equinox, specifically because I truly honor the start of this season. Yet, as I start this year, I’m fighting off the memory of the last two falls that haven’t been all I hoped they would be, to put it mildly. Last year was particularly hard because I had been full of optimism and was nearing what I thought would finally be the end of chemo and the beginning of freedom. My oldest was starting at a new school, with all new friends and new parents for me to meet. And my youngest was beginning his second year someplace he had always been happy. And then came October. There were so many disappointments and fears wrapped up into one little microscopic broken chromosome.

I have no interest whatsoever in dwelling on any of that now. I’m just trying to figure out how to silence the voices that whisper occasionally. While other parents carpool and take their kids to soccer practice without a second thought, for me it means everything. And because of that, it makes everyday meaningful but also stirs up worries about this being temporary. This IS the gift. Being able to drop my kids off, have lunch with a friend, go to my book club and work are things that I celebrate, everyday, all day long.

In the last couple of weeks, I’ve learned about a couple of people that have passed away who seemed to be doing well for a while and then had a recurrence of their disease. That, in combination with the PTSD-like feelings about the last two years, have brought on these unsettling feelings. What I’m focusing on is that just on the other side of October is December and the one-year anniversary of my transplant. I am so lucky to have gotten where I am today, not only to be alive but to be healthy, active and re-engaged in my life. Even those who have had successful outcomes have often dealt with more challenging months post-transplant than I have. And that is one of the tricks about being a “survivor.” My friend Jessica wrote a beautiful piece about how hard it is to feel like the lucky one when those around you are struggling. And as she so eloquently states, that is why we never stop fighting. We fight for the ones who can’t fight for themselves. We are all in this together. I hope I will be given the gift of a long, long life so that I can fight for them for as long as possible.

To lighten things up, I wanted to say an enormous thank you to a beautiful group of women I met over Labor Day weekend. I was ecstatic to be able to go to my cousin’s wedding in Boston. It was an amazing weekend and I had more fun at the wedding than I have had in a very long time. It was perfect. But one of the most special parts about it was that the night of the rehearsal dinner, I was introduced to several of my aunt’s friends who have been following my story from the beginning! I was so humbled after meeting the first friend and then one by one, more friends and family introduced themselves. I was really overwhelmed with emotion and an incredible sense of love. All of these women said that they feel like they know me, my family and my story so well after following the blog. I don’t think I really comprehended the reach that this is having until that moment. But what really touched me was they all said that they had been praying for me. To know that these amazing women who had never met me had the kindness in their heart to follow me and pray for me and my family left me speechless. So to my incredible posse from Boston, THANK YOU!!!! I am so grateful to have gotten to meet you and I look forward to seeing you again!

Lastly, I got a haircut – the first one in 2 1/2 years! I don’t think too many other people would even notice but, in a weird way, it felt like a step forward. I cut it so that it would have a little more style and help it grow out more nicely. I guess I’ve always hesitated to cut it in the past because it felt temporary. As silly as this sounds, cutting it now feels like I “own” this hair now. I know how silly it sounds, but it was very cathartic! Once again, it’s the little things :)

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Iron Girl 2012


Yesterday was the day I have been training for since I was able to run again in February. I finally had the opportunity to put it all to the test for my 3.5 mile run on the Iron Girl course. Again, I was blessed to have the opportunity to run with Roseann and we powered through the course as fast as my legs would take me. I crossed the finish line in 34 minutes, knocking 8 minutes off of my time from last year! My hope was to have my average mile time be under 10 minutes per/mile, which I’ve never done before for more than 2 miles consecutively. So it was a bit of a reach. However, I almost made it, with an average page of 10:04/mile. I’ll take it. Next year the goal will be for 9 minute miles :)

Aside from a great race, I was honored to receive the Athleta “Power to the She” award. Those of you on Facebook have probably seen some of the videos that Brian posted. Here is the roundup in case you wanted to see them:

Athleta presenting the award >>

A video of me getting to say thank you >>

And my favorite video of all, a fantastic video about what Team Inspiration represents. If you’re not following us on Facebook, please check out our page and follow along.

Last, but not least, for my 15 minutes of fame, here is the post on the Athleta blog >>

I got a feature on the homepage of the blog, which is nothing short of overwhelmingly awesome. I am awe-inspired by the athletes that Athleta features and to have an opportunity to be featured among them is quite an honor.

I’m having a hard time coming up with words to talk about all of this. I’m honored and greatly humbled. Most of all I’m grateful to have the chance to show people that cancer doesn’t have to destroy you, that there is something great that can come out of it. During the event yesterday I met so many others affected by cancer. I was so saddened to hear the stories of those who have been given terminal diagnosis. The swimmer on my relay team has two close friends, both in their 30s who are facing stage IV cancers. One friend has melanoma that has spread to her bones, spinal column and possibly brain tissue. She also has an 8-year old son. There is virtually nothing that can be done now to reverse her fate and she is in such great pain that fighting feels too hard. I was at a loss for words when I heard this story. I try always to be a voice of optimism and encouragement even when facing the worst of it, but there was nothing I could say that would make her situation look or feel any better to my teammate who was heartbroken over the imminent loss of her friend. I wanted, more than anything at that moment, to be able to draw on something from my experience that would make sense and might give a glimmer of hope and the best I could come up with was “never give up because you just never know.”

There were so many other cancer patients there, from a 5-year old girl with a brain tumor to another brain-cancer patient on her way to the World Iron Man Championships. This was her greatest dream and through the support of friends and  strangers all over the world, she was given a slot to go to Hawaii and fulfill her dream. It may be her last opportunity.

All of these stories left me feeling almost ashamed that I won the award. Was my fight really that hard in comparison? I only ran yesterday but what about the triathletes that suffered through three brutal legs of the race and faced far greater challenges than me? I admit that it took a little pep talk from Roseann and Brian to get me over the feeling that I wasn’t worthy of the honor. What Roseann said that helped immensely was to seize this as an opportunity to help others. For whatever reason, I now have a platform to share my story and to help someone else. Maybe that’s my purpose in all of this? I choose it to be. There has to be something positive to come out of the darkness that the past few years have brought.

As far as where I am on my own journey, medically speaking, things are going well. I am tapering down my second immune medication and my counts look good so far. My doctor gave me a gentle warning that I still need to be cautious in my activities. He did ask me not to attend a concert last week with Brian due to the crowd. He emphasized that the smallest thing (exposure to the wrong virus, too much sun, a food infection) were all things that could trigger a graft versus host response. The most important thing is for me to try to stay as healthy as possible over the next year while my body heals and the new immune system takes over. It generally takes about 2 years for the body to fully adjust. I’m 8 1/2 months in, but am getting there. As my doctor always reminds me, it is a small investment to pay to gain a lifetime.

So before I go, here’s a pic from Iron Girl. This is what a moment of pure happiness looks like!

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