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.