You're Doin' It Dude!

I went to Denver this weekend and got to spend some time with my First Descents family. They threw the most amazing 80s ski party & around 700 people came out decked in neon attire and raised a ton of money for a great cause. While in Denver, I joined a great group of FD alums and supporters who were running in the Denver Rock 'n' Roll marathon. I ran with 3 awesome ladies in the relay & had a blast!! I did pretty well considering that I am not used to running at 5000 feet above sea level.

It was great to meet many more members of the FD fam & I continue to be inspired & encouraged by all of them!!

Into the After After Land

There is this great abyss between treatment and finding your “new normal.” When treatment ends and you start to wonder what is next, you fall into this abyss, and you just sort of float around and try to latch on to pieces of your former self. As you are trying to adjust to checkups instead of infusions, I found it was sometimes possible to forget that I was bald only months before. I’d hang out with friends and laugh, and in those moments, the burden of being constantly aware of your condition was alleviated. Quick enough though, someone would complain about their monthly visit from Aunt Flo, and I would be reminded that I won’t be seeing Aunt Flo for 3 more years. When my eyeglasses fog up at the bottom because heat is radiating from my cheeks, I remember that I am a survivor. It is these small constant daily reminders that make you more aware that you are in the “after after” period of your survivorship. After diagnosis, after treatment. People give you all kinds of advice about the stages of diagnosis and treatment. Well in my “after after” – in my abyss – where is the advice for that?

So far, I’ve found that you make it up as you go along. I find myself making constant gut checks. I think about where my head is…. How am I feeling today about where I am in my survivorship? Is my internal compass pointed in the right direction? Am I being fulfilled in my life? The answers to those questions and the many others I ask myself vary from day to day, but I can say as a 26-month survivor that every time I take a reading of my state of mind, I find another piece of the puzzle that makes up my “new normal.” Yes, the fear, the worry, the isolation, the anger, and the wondering that are present deep in the abyss, creep back into my mind when I allow them to be explored. And as survivors, we should explore them, and seek direction if we need to, because I know that my “new normal” puzzle is far from complete.

I started a clinical trial in February, and despite the lactose intolerance that the pills cause, my body has adjusted rather well to the side effects. The best side effect of all is a tiny bit of peace of mind. Strange to think that being on treatment again brings comfort, but it does because it provides an element of structure again in the chaos that is the abyss. I do occasionally worry about the day 6 months from now when I have to stop taking the pills, but for today, I am going to keep gathering my puzzle pieces. I hope that in the coming months, I will have enough of the pieces of my “new normal” gathered and tucked away in my mind that I won’t be fazed one bit by letting go of my pills and floating back into the abyss.

Tick Toc

Sometimes it is really really hard to stop viewing your life in the increments between scans and checkups. I know exactly when my 3 months are up and it is time to go back to the doctor for bloodwork. Every 6 months, I get a mammogram. Well, two weeks ago, I had a pretty big "oh crap!" moment. I went in for my mammo and while I was waiting to speak with the radiologist and hear that everything was A-OK, the mammo tech comes up to me and says, "Hey, I need to get a few more pictures."

Screeeeeech!

My worst nightmare. Hearing those words. I was fozen. Oh crap. What the heck does that mean?!? She told me that they saw something on my films so that warranted taking close-ups of my cells. Ugh.

After a few more pictures, I was shown my films and the white spots that appeared in the area where my cancer once was. Uh oh. What is that!?!

They told me I could wait 3 months and come back for another mammo to see if the spots had changed, or I could biopsy it. The only way to know for sure is a biopsy. No way I was waiting 3 months. So, I went in to have a biopsy. Waiting for that appointment was agony. I was instantly flung back into that period of infusions and scans that I thought I was starting to finally put behind me. The biopsy itself was pretty painless, although it did sort of feel like getting your ear pierced, except ya know, they didn't stick the needle through my ear.

Four days later I got the results. I noticed that I had a missed call and a new voicemail from my doctor. The waiting was killing me and I wanted to know if I was going to be able to move forward in the new direction I have charted, or if I was going to be stuck back in the past two years again. As I started to listen to the voicemail, I swear my heart stopped beating. I was completely still as I listened to the best words a person can ever hear from their doctor. She said "You don't have to call me back...."


Whew! Great news!

Spreading the First Descents Love in Texas!

Last weekend in Dallas, I had the honor of attending and speaking at a First Descents dinner party. If you haven't heard of First Descents, check them out! I had the experience of a lifetime at the Wisconsin kayaking camp in June 2009.

FD volunteers Scott and Anna Ritter hosted the dinner party to promote the FD message. We gathered at the beautiful home of Art and Linda Alexander. About 45 FD friends and family gathered for dinner and wine to discuss the FD programs for young adult survivors. FD Founder Brad Ludden and Board Member and Executive Director Joel Appel were there to provide details on the FD mission and programs, and guests got to view part of the new documentary about FD called The River Ward. (Click here to view The River Ward trailer)

I am attending the Vail kayaking camp at the end of August, and I can not wait to get back on the river! This year I am going to get my roll!!

To my First Descents Family

I was diagnosed with cancer in 2008 when I was 27. When I first met with my oncologist to discuss my treatment, I saw the chemo drugs had a long list of side effects. My doctor told me that they had ways to manage those side effects. By the end of treatment, I had a gigantic tin full of pills, and I was completely numb to what was happening to me. The endless string of infusions, tests, scans, blood draws had beaten me down. Gradually, as I began to "thaw out" and realize what was happening to me, I experienced some additional side effects of treatment.... how am I supposed to manage the side effect of isolation? Does my doctor have a pill for that?!?

How do I manage the loss of self identity when I look in the mirror and don't recognize myself? How do I begin to forgive my body for betraying me? How do I manage to move forward when all I see is a bald head, puffy steroid face, and body that is 25 pounds heavier? How do I manage the loss of control over my life that was once so intensely focused on a 10-year plan? Pretty hard to do when the only timeline you hear is one of 5-year survival rates.

For me, all those emotional side effects were managed by chance when I decided to attend a First Descents camp. While I was googling every medical term I heard to try to better understand my treatment, I stumbled on a blog post about a kayak camp for young adults with cancer.

Before my year of treatment was even over, I found myself in Wisconsin at an FD camp. It is hard to describe exactly what goes on at camp. Without saying a word, I was instantly connected to all the other campers simply because of our shared experience of cancer. I guess the easiest way to describe it would be a week of discovery that you are not your cancer; it's the realization that you will not be victim to a word. The survivors that I met at camp showed me how to use this brush with mortality as a catalyst for creating a better self. There is an internal calm that comes from seeing that you are not alone and that these other survivors are moving on and living their lives beyond cancer. First Descents was the best treatment for my emotional scars. I came out of that camp with a renewed passion for life. As survivors, our reality challenges us to dig deeper. I decided then that I was going to control what I could control -- my recovery.

When I look down at that tin of pills now, all I see is a way to numb the pain, not move past it. The truth about survivorship is that the people who have the kind of support that First Descents gives have better survival rates. Medical science is just starting to catch on, and studies are showing that there is more to surviving cancer than pills and infusions. In my mind, Brad and the First Descents staff are so ahead of the game when it comes to cancer treatment. As campers, we use our experience in order to further evolve physically, spiritually, mentally, and emotionally. My oncologist killed my cancer, for which I am grateful, but my First Descents family showed me that I am not confined to the constructs of a label, and they encourage me daily to get busy living.


I love you all!

OMG! Summit for Young Adults in NYC

On Sunday, May 23, I attended the 3rd OMG! Cancer Summit for Young Adults in NYC. I had an amazing time being surrounded by other young adults. We had candid conversations and nothing was off limits. That's how we YAs like to do survivorship. I can't wait for next year!!

Counting Down to Two

I am beginning to think that there is something to the two-year mark. As I've mentioned before, a friend of mine (a 2x stomach cancer survivor before 30) said that surviving cancer is like walking away after being in a horrific car crash, and you turn around as you walk away and take a look at what you just went through and you can't believe that you made it out. I am just now starting to understand what he meant. I am emotionally thawing out.

In my 19 months as a survivor, I have progressed from seeing a psychologist while going through treatment to needing a full-blown, med-prescribin' psychiatrist. One of the first things he told me that is finally starting to sink in is that I have PTSD. Gee, I thought I just had chemo brain, but I've since discovered that memory loss and cognitive dysfunction are some of the most common symptoms of PTSD. He first put me on Effexor, but that only delayed the emotional healing I need to do because it kept me completely numb. So now, I see him weekly and I spend most of the hour crying....but despite all that sadness and anger, knowing that I am running straight toward my problems and not away from them gives me hope.

One thing that angers me most is that other people do not understand that cancer-free does not mean free from cancer. Some people I know think that since I am done with chemo that I am completely well. I can say unequivocally that I am not well. But I think the further away I walk from the car crash of my life that is breast cancer, the scars and bumps and bruises will heal, and I am hopeful that when I turn around and look at that crash, I will no longer feel as if I am waiting for the next one.

I Did It Myyyyy Wayyyyyyy....

Every once in a while, in moments of stillness, my mind will come upon a memory of something that happened to me during treatment. This seems to be how I am able to reflect on what treatment was like for me since I can't seem to remember events in chronological order.

Last night, while in bed right before sleep, I remembered the intense inner outburst I had while preparing for radiation treatment. I was so overwhelmed by the fact that I didn't have complete knowledge of the entire process that when they told me I was going to have to be tattooed, I burst out in tears. In that moment, I didn't want one more mark on my body because of cancer. I already had scars galore and the thought of my first and only tattoo being from cancer was too much to take.

When the radiation tech told me I had to have the marks permanently put on my skin, I said why?? She responded that it was because they needed to align the radiation beams the same way every day and it couldn't be off. Hmmmm..... so that required permanently marking my skin? Um, no. My first tattoo was not going to be on account of treatment. I could not stand the fact that I would have to look down at my torso every day and see black dots that represented a time in my life I would rather forget.

I told her I know there must be some other way to mark my skin and cover it up for 7 weeks of radiation. She went to confer with my radiation oncologist and soon returned with the simplest solution I had ever heard. Mark my skin with a sharpie and put clear sealant dot stickers over it. Like duh. I left extremely annoyed that they insist on tattooing people just to save some effort on their part. The tech instructed me that if they rubbed off that would be a major pain for them and they would have to start the alignment process all over again. Boo hoo. Really?? I assured her that I would take good care of my marks and redraw them and put new stickers over them every day if necessary. I didn't have a single issue with my dots the entire 7 weeks.

Looking back, I know it wasn't just about the black dots. It was about exerting some sort of control over what was happening to me. I couldn't control cancer, but dammit, I was not going to get tattooed for the first time on its account. Since then, I have been in conversations with other survivors in which they make remarks about these black dots they had to get put on their skin. I say, you didn't have to get them put on. I didn't. The looks of confusion were somewhat priceless..... I said, you don't have to do anything.

Even though they are just little black marks, last night I realized how glad I am that they are not there. For me, it is about going through the process your own way. Everyone deals with treatment and survivorship differently, and for me, questioning the standard protocol was just me doing survivorship my way.

Note: The picture is an example of the dots I am talking about. So thank you to whomever posted this picture on the internet :)

No Cryaking Allowed!

GET EXCITED! First Descents, an organization that provides FREE outdoor adventure programs for young adults (18-39 years old) with cancer, opened applications for its 2010 programs.  If you or someone you know is interested in attending, please visit www.firstdescents.org/programs or email info@firstdescents.org with questions.


I attended the Wisconsin trip to BearPaw last summer and it changed my life. I never thought I would be able to kayak in white water, but I did it! I highly encourage other survivors to apply.


Go First Descents!!!!

Anxiety, Sleeplessness, Memory Loss, Oh My!

So a few weeks ago my psychiatrist told me I have mild PTSD. I had read somewhere in all of my research about cancer that sometimes survivors get PTSD, but I don't think I really took note of the symptoms.

Anger
Flashbacks
Fear
Dread
Hyper-Vigilence
Intimacy Issues
Memory Loss/Cognitive Dysfunction
And the list goes on....

Oh those look mighty familiar. Through my weekly therapy sessions, I would say that I have encountered some of each of those. Ugh. So cancer is the gift (hardy har har) that keeps on giving!

The effectiveness of our memory banks is determined not by the total number of facts we take in, but the number we wish to reject. ~Jon Wynne-Tyson

Apparently, memory loss, the inability to "think straight," the feeling that one is lost in a fog -- these are the most salient features of PTSD, the most common complaints. I've been saying for months that I feel like my brain is a hard drive that needs to be defragged. I am sometimes unable to locate information in my brain. I know that I know it... I just don't know where I put it in my brain. No wonder the past year and a half are but a blurrrrrrrrrrrrr.

Happy New Year!

Of all the alternatives, running away is best. ~ Chinese Proverb

Time sure does fly when you are thinking about the future and trying to run away from your past. When I was diagnosed, I had a friend (who twice survived stomach cancer) tell me that surviving cancer is like walking away from a horrible car crash. As you walk away from the event, you turn around to take a look at what you have just been through.... and you say to yourself, "How did I come out in one piece?"

Physically, I am in one piece. Emotionally, I am in as many pieces as I have compartments in my head. I've always been a great compartmentalizer. Before cancer, I thought I needed therapy because I had relationship issues. After cancer, I needed (and still need) therapy because I would wake up crying after having dreams that I had gotten completely different types of cancer. The good news is I have managed to contain my crying outbursts to my one hour a week session with my psychiatrist.

I look back on my life the past two years in flashes of memories. While going through treatment, I measured the passing of the hours, days and months by when my next treatment, injection, blood draw, or scan was. In retrospect, those days are a blur now.

I am 19 months N.E.D.

Depressingly, I discovered that an old friend of mine was diagnosed with Stage 4 colon cancer in August. I e-mailed to ask him how he was doing, and after his response and an apology for the delay getting back to me, I responded:

Hey, no apologies - ever - for not wanting to talk about this crap. Some days I felt like it and others I didn't. Some days, I felt like I had to tell everyone I came into contact with about what I was going through so I would feel a little less alone. Other days and weeks, I wouldn't want to leave the house because I didn't think I could take listening to one more person bitch about some idiotic problem that wouldn't matter tomorrow.

I always appreciated people's concern for how I was doing, but I rarely wrote back because writing back would force me to think about it, and I couldn't put on the strong, happy face that people expected to see if I was thinking too much. People would say things to me like, "I don't know how you do it...." Um, excuse me? How do I do it? You just do it.

Even though I came to the profound realization that nobody could help me through this besides myself, I also realized I was not alone. I know that is only a small comfort, but nobody can understand this unless you have been there.

The words just flowed, and I cried while thinking the thoughts that enabled me to write them. I hardly think I am in a position yet to offer real perspective on survivorship, but I am getting there.

Over the past year, I have met some incredible survivors, who make me feel less alone. I can be in a room with any one of them and feel like I am instantly connected because of our shared life experience of cancer. Oh the gifts that come in the form of I'm Too Young For This! Cancer Foundation, First Descents and Planet Cancer.