Notes From Supergirl

My Diary from the Trenches
Browsing The Daily Record

The Fall

September6

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

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.

Summer Lovin’

July21

I suppose it would seem that I gave up on the blog since it has been so long since I have written. It’s often on my mind, but I haven’t had a lot of time or anything that seemed particularly noteworthy to report until recently. My recovery has been very much the same – which is a very good thing. Overall I feel very strong and have a decent amount of energy. The stomach problems that I was dealing with through the beginning of June have settled quite a bit recently. I still wake up daily with a new blotch on my face though. I’ve learned to not care as much. For a period of time I didn’t even want to leave the house because of the blotches. Now I’ve figured out the right combination of skincare products and topical steroids that seems to make it easier to go out in public. But I am eager to see what happens to my skin when I am finally off of all of my medications. My hair is growing back and it’s not nearly as curly as last time. It’s wavy and very thick and sort of any ashy color. I wouldn’t call it gray but it’s not blond or brown either. If you know my brother, I would say it’s the same color as his hair. We look very much alike right now.

Day to day life has actually been pretty amazing, almost in an overwhelming way. Life seems to have calmed down a little. The summer has been easy and casual, calm and restful. I only have to go to the hospital every two weeks now and I am almost completely finished with one of my immune drugs. As soon as I am finished with that, my doctor plans to begin tapering down the other immune drug. Thus far, my body has responded well (KNOCK-ON-WOOD!!!). There do not seem to be any signs of graft versus host disease, which is very reassuring. I am continuing to run and bike and add other activities as I can. Since the beginning of June I have cut 6 minutes off of my 4-mile time! I’m working very hard on getting faster for Iron Girl in August and truly enjoying every second of it.

The overwhelming part of all of it is two-fold. One, I am just overjoyed with how blessed my life feels right now. I feel like I can see the other side in vivid technicolor. I often forget about cancer and other bodily ailments and just feel normal. I’ve had multiple incidents in the past few weeks that have served to remind me of how lucky I am to be here at all. First there was a news report on Rock Center describing the desperate need for bone marrow donors and the fact that so many people that are matches do not show up at all to actually make the donation. I may have blogged about this before. But watching this story and seeing that there were people who have died simply because their donor never showed or because they never found a match was beyond heart-wrenching. Not only did I have two perfect matches, but I had one who was more than willing to go through the process of giving me her bone marrow that truly saved my life. A day doesn’t go by that I am not grateful for that.

A second incident which really hit hard with me was that I had to return to the bone marrow transplant (BMT) unit at University of Maryland two weeks ago. My doctor has decided to see his patients on the unit rather than in the cancer center clinic because he was concerned about the exposure to germs with the growing population of the clinic. Thus, each week that I go to the hospital now, I will have to revisit BMT. Walking through there the first time was nearly paralyzing. If you came to visit me, you know that there are two locked doors that you must go through to enter the unit. You pass through one, wait for it to lock behind you, and then you pass through the second door. Being on the inside of the unit again felt frightening. As much as I loved my nurses and the care I received while there, it certainly felt like I was imprisoned, locked away from the outside world. In returning, on the one hand I was happy to see my nurses and show them that I’m alive and well. On the other hand, I felt horrible passing by patients who looked so sick. I wanted to stop by each one and say “I was just like you a few months ago, it will be okay.” And for some of them it will be, hopefully for all of them.

In the waiting area within the unit, you now must wait with other BMT patients who are sitting right next to you. In the cancer center, you retain a certain level of anonymity because you never know what any one patient is there for. You can guess on a few of them, but for the most part it is very private. In this new situation, it is clear that anyone sitting there waiting is a BMT patient at some point in the transplant process. My first day there, I sat with another couple where gentleman was using a walker and wearing a mask and appeared to be a patient recently out of transplant or perhaps waiting for a transplant to happen. As it turns out, he was 53 years old and has been battling lymphoma for years, as his wife told me. We began chatting and he asked when my transplant was and I said December. Their mouths nearly dropped to the floor. His transplant was in August and he had faced a very grim case of GVHD. He ended up being allergic to the immune suppression drugs that we need to take and he needed to be put on very high dose steroids. The steroids essentially wasted away his muscles, thus leaving him wheelchair bound. In recent months they had come to my doctor to help with his care and felt that he had saved this man’s life. He is now able to use to the walker and his body is beginning to heal. They were in awe of how healthy I looked and couldn’t believe how well I was doing in just 6 months since my transplant.

I was completely humbled by the encounter. I felt horrible about what the man had been going through. I didn’t know what to say and tried to downplay some of my success by simply saying that I had been blessed to have a perfect match. He responded that he, too, had had a perfect match! They were incredibly kind and said that it gave them hope that he would be that healthy soon. Later, as I walked out with his wife, she described how difficult these past three years have been for her husband and how he has two kids and it all felt so unfair. I completely understood.

When I was finishing up my appointment, my nurse told me that the couple had commented on how nice it was too meet me and what an inspiration I was to them. I just began to cry. All I could think about was how petty I have been to feel bad about my hair or my skin these past few months. How often I have lost sight of the big picture and focused on superficial things that I know don’t matter. I am alive and that’s all that matters. And for whatever reason, I have been given this gift and this opportunity to be here a while longer (hopefully a long, long while!) and I should never lose sight of that.

There have been a couple of other things that have come up since then that have further made it clear to me how beautiful my life is and how lucky I am. I don’t want it to sound as if I haven’t been grateful this entire time because I have. As I said, I feel like everyday I see a miracle or experience a miracle. But when the universe seems to be sending you neon, flashing signs as a reminder of my good fortune, that is where I almost have to stop and catch my breath.

True to old patterns, I often let these moments of joy become tainted with fear – the fear of when will this all go away? I think, “this can’t last forever, right?” “When will the shoe drop?” I even had a dream a week or so ago about being told I needed to go through chemo again and I woke up in a cold sweat after saying absolutely not!

It will be a long time, a few years, before I am considered “cured.” I pray I make it to that point. I feel nothing but optimism about it, but there is that occasional twinge that pops up to remind me that nothing is a guarantee. But I also recognize that it is a waste of time and energy to live with fear and that life is short regardless of cancer. But some days, I admit, I have to push myself a little harder to fight the fear. I look forward to that feeling going away at some point.

In other great news, I have been spending a lot of time working on things for Team Inspiration. I am close to launching their new website which I couldn’t be more excited about. I will be sure to share it here when it goes live. I have also been busy working on other projects when the kids are in camp. And I actually made the time to read an entire book and get myself back to book club. The book was wonderful and I highly recommend it: Shelter Me by Juliette Fay. What I’ve realized is that you can make time for the things you want to do. We often make the excuse that we don’t have enough time for things, but we can make time for things if they are important to us. Sometimes it means getting up at 5 am or going to bed at 1 and other times it just means being more efficient. For me it means all three, but I’m happier when I can fit things in and do the things I really enjoy.

I go back to the doctor this week and am curious about who I will see if the waiting room. Rather than dread it, I’m going to try to look forward to it and remind myself how happy it made me to see patients who were thriving when I was in-patient myself. The greatest gift when I was there was to meet survivors who were living normal, healthy, happy lives. They were my inspiration.

2 Years and Still Here!

June3

It is funny that June 1, 2012 came and went and it wasn’t until today that I realized it has been 2 years since I began this journey! My oversight of the passing of the date should give you a sense of how little I think about cancer these days, which is awesome. It is obviously still very much a part of my life, but I no longer focus on or think about the days as I used to. I am in the nebulous aftermath of the transplant and there is no definitive finish line and nothing left to do but live and hope. I’ll take it.

There are so many joyous things that I feel these days mixed in with a lot of junk and negativity that are partially from normal life and partially from being a cancer survivor. When I start to hit a lull, I’ve learned to pick myself up a little faster and I’ve learned to turn more quickly to yoga or running or meditation or good friends as a way of reminding myself that nothing is worth fretting over, as long as it’s not cancer. So for this two-year post, I thought I would write one of my trademark lists as a reminder to myself about how far I’ve come and how blessed I am. It is a way of expressing enormous gratitude to the universe and my friends and family for helping me get here. And hopefully some inspiration for others on their journey to never give up hope. It does get better.

In preparing today’s list, I thought I would go back and reread my very first post on Day 1, June 1, 2010. I have to say I was surprised by what I read because I would have expected some scary, sad details, but instead this is the last part of that short post:

So rather than give you the gory details of Day 1, I’m leaving you with the top 5 positive things I can say about this experience … so far:

1. I have been overwhelmed by the amount of love and support I have received from friends and family. With this team behind me, it makes it easy to get up everyday and fight. I can honestly say that I feel like one of the luckiest people in the world – my beautiful, healthy children; my loving family and my amazing friends. These are gifts that will last forever, long after this hiccup has passed.

2. I’m facing one of my greatest fears – and surviving. I’ve always had a fear of doing things for fear of getting hurt or sick or dying. They always say fears like this are really a fear of living. It is a gift to be able to face this fear early enough that I will make everyday forward a day of living fully.

3. I’ll be the only one who doesn’t need a wax during bathing suit season (what, too graphic?)

4. I’ve gotten to see a pretty impressive side of my husband. He’s not so bad afterall.

5. A lot of people have already joined the bone marrow registry which means that my bump in the road may save one or more lives in the future. Thank you to everyone who joined!

So here’s the awesome news, guess who will need a wax this bathing suit season??? Not going there, but it made me laugh! And that bone marrow registry probably just saved MY life so big yeah to that! Overall, in rereading my initial thoughts about this whole experience, I can say I feel really good about where I am now. I have learned a lot of lessons and taken a lot of positive out of this negative experience. My world and eyes have opened to things I never saw or understood. And that has made life richer.

I beat myself up now and again when I am not feeling so enlightened. When I am irritated by the kids or in a terrible funk over my hair, I hardly feel like someone at peace with the world. I feel superficial and bitter. The good news is that I recognize it for what it is and I move on. I’ve let go of a lot over the past two years. I don’t let most things anger me and I don’t care about a lot of things if they’re really not that important. I care about my family and friends and I care about the relationships I have with people. I’m disappointed that I don’t look the way I want to or run as fast as I hope to, but I know in time I’ll get there. The greatest thing I’ve learned is that believing in yourself works. I’m not sure it will cure cancer, but it sure makes like richer. It makes the critics look like fools and it makes us feel like superheros when we set our minds to a goal and defeat the odds to reach it. There is nothing more empowering.

So here is today’s list of Top 10 Ways My Life is Better After Surviving Cancer:

1. I faced one of my greatest fears and beat it – nothing else is nearly as scary now.

2. I learned who my true friends are.

3. I have no doubt that the love I have for my children is the reason I’m here today.

4. I believe in myself in a way I never could have before. I don’t doubt my abilities – I know I can accomplish anything with the right mindset and enough hard work.

5. I understand what my mother experienced in her own battle with cancer. I always loved and admired her, but I now have a much deeper level of understanding and am grateful to have inherited her strength.

6. I see a new path for myself in life that is richer, deeper and more fulfilling than what I saw before. I will make a difference.

7. I’m not afraid to be honest anymore, with myself or anyone else.

8. I know what’s important in life. I know that I’ll look even better with a glow on my face than with an expensive pair of shoes (though the occasional splurge is ok ;) )

9. I’ve reached an entirely new spiritual understanding of the world that finally makes sense to me. It’s personal, but it’s peaceful.

10. Getting older feels really great! Each birthday is one to savor instead of look at with dread!!!

There you have it. As for the life of this blog, I plan to keep going until December 2012 – the one year anniversary of my transplant. I would like to start 2013 completely cancer-free and on with the rest of my life!

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