Notes From Supergirl

My Diary from the Trenches

Iron Girl 2012

August20

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!

8 Months Post Transplant

August12

I have been so eager to blog for the last few days and finally took a moment to try to escape the screaming children and do so. The summer has been fun, but as with most moms home with the kids, I am starting to get eager for them to go back to school. Camp is over which leaves long days for them to fight with each other and complain about not being entertained enough. I do love them dearly, but a few hours of quiet will be a welcome treat. Can you tell they are screaming right now?!?!

In any case, I have a lot of great things to report. First and foremost, I have completely finished with one of my immune suppression drugs and begun tapering down the second one. My blood counts were excellent last week – all NORMAL – and one of my t-cell counts is just shy of a level they consider normal for transplant patients. It isn’t exactly “normal” but it is high enough that I am out of a high-risk zone and will no longer have to take one of my antibiotics. The other T and B cell numbers are following closely behind and working their way up. As I continue to taper down the drugs, these counts will continue to come up. And thus far there have been no signs of GVHD. My skin has improved quite significantly as well. It’s not so much a visual change, but I have had very intense itchiness for the last few months and that has subsided which is an enormous relief.

I have also been training hard for this year’s Iron Girl race which is on Sunday. I am so excited to have the opportunity to run it again on a relay team with my nurse Roseann. And for the cherry on top, I just found out that I won the Athleta “Power to the She” award for the Columbia race. Athleta sponsors Iron Girl and they select a woman for each city’s race who inspires others. I had submitted my story past the deadline on a whim and thought nothing of it. There are some phenomenal stories of the women from other cities who have won this award. Well I got word yesterday that they selected me! I was completely stunned and honored. I will receive the award at the race and my story will be featured on their blog next week (I believe). I’ll post a link when it is live. I’m really over-joyed about it all and having the opportunity to share my story in a national forum. I hope that it might inspire some other woman going through a similar experience to keep fighting. I know that so many of the stories I have read have done that for me.

Another really awesome thing that I got to do recently was a radio show for the Ulman Fund promoting the Half Full Triathlon that I participate in in October. I went on with the race director and another survivor to talk about what the race means to us and why others should want to support this great cause. The show aired on a couple of local stations over last weekend and will air again in September. I happen to be out of town last weekend so I missed it :( I’m going to try to get a digital copy or just hold out for the next time it airs. It was a very fun experience and an honor to be asked by Ulman to talk about the race.

I’ve also been busy with work and looking forward to a lot of fun things that are coming up in the next few weeks and months. I’m feeling really energized, strong and empowered. It’s a good feeling.

Before I go I just wanted to share something I’ve been doing that has really made a difference in my life lately. I got the idea from a book and it’s changed the way I see things. The book was about someone going through an incredibly difficult time in life and not being able to see to the other side of it. Someone pointed out that there are miracles that happen every single day, all the time, and we just don’t open our eyes to see them. The idea is to find those miracles and celebrate them. In the beginning you might just see one or two things, but as the days go on, you start to see so many things that you might have missed before. Yes, going through cancer for two years makes everyday feel like a miracle to begin with. But there are days it’s easy to forget that and get wrapped up in stress and petty things. I realize this little “trick” sounds cheesy, but trust me, it works. Try it for a few days and you’ll get over a slump much faster than usual.