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Monday, April 30, 2012

Before and After

I find myself constantly thinking of "before" and "after", usually when things are time stamped, like photos or emails or even projects at work. I think about where I was,who I was,and how I viewed life when that picture was taken or that email was written,and how different my life is now. At first I would think about life before diagnosis and life after diagnosis, then it was before the stem cell transplant and after the stem cell transplant and now it's before the blood clot and after the blood clot. Each time something life altering as happened, I wistfully look back in my past and think, "I was so lucky then" (even though at the time I certainly didn't think so) and it makes me wonder...will I look back on today and think I was so lucky now when the next bad thing happens to me?

I don't want to be a pessimist and I try to stay positive but with my history, I feel like I'm constantly looking over my shoulder. And it's interesting to think about my life pre-cancer and how I interacted with the word cancer on several occasions but never really gave it much thought...

Example 1: I signed up for the Be A Match donor registry in 2001. I was a sophomore in college and don't even remember signing up, I probably did to get a free t-shirt or a slice of pizza (life was so easy then...or so it seems now, it certainly didn't seem so then). I didn't think about the registry in terms of possibly saving someone's life one day. I had heard of bone marrow donors but I never knew what a transplant was, what it meant and how intense it is. In 2011 when my doctors were looking for a donor for me, I received a letter in the mail from Be A Match telling me that I matched up with someone and I could save a life. Yes, I matched with myself. The irony was not lost on me as I logged on to the website and asked to be taken off of the registry. Who would have thought that I would sign up for something that I would then need ten years later?

Example 2: After college I moved to New York and interned at an ad agancy where I worked on the Bristol-Myers Squibb account. I was sad that I wouldnt be working on a fun beauty account, instead a boring old pharmaceutical account....because health and medicine is boring, right? Well I had the opportunity to work on the launch of a new breast cancer medication. I produdly put this on my resume,showing future employers that I had been an integral part of the team that launched the ad campaign for a new medication. I forgot all about that experience until I was cleaning out files the orhter day and came across a resume from 2004. The word "cancer" jumped out at me and it was crazy to me that it was typed so cavalierly at the time. I never thought about the lives that medication would save, I just thought about how it would help me get a real job.

Example 3: The infamous yellow Livestrong bracelets. Everyone knew the story of Lance Armstrong and his history as a cancer survivor and soon everyone I knew was rocking the yellow Livestrong bracelets. Ross had two bracelets when I met him in 2004 and I remember stealing one from him and wearing it on and off for about a year. Then when it wasn't "in" anymore, I threw it away. I didn't wear the bracelet to honor anyone, I didn't wear it in memory of anyone, I wore it simply because it was a trend.

Part of me is sad about these examples as a time when cancer was something that happened to other people. I was probably like most people now who haven't experienced cancer first-hand themselves or through a close family member, you know cancer sucks, but you really have no idea. It's not like I didn't worry about it happening to me, I did, but I still was part of the healthy, "normal" world. You take everything for granted until you don't have that luxury anymore. "Before" I was carefree and somewhat naive, "After" I'm a constant worrier and I live with fear everyday of the future. Because I always wonder what will be my next before and after.

Saturday, April 21, 2012

To eat or not to eat...

That is the question. I torture myself constantly about what I am putting into my body. Because often I wonder if something I consumed triggered the cancer cells. Doctors have assured me that isn't the case (it wasn't Splenda that caused cancer although I've stopped eating it just in case) and despite what I read online, spinach won't cure me. But that doesn't seem to stop the intense guilt I feel after consuming fast food on an occasion, because I wonder what those chemicals are doing to me. Especially after the constant ups and downs, I keep wondering, "what can I do???"

My doctor said to eat a healthy balanced diet that is low in carbs. I also started taking multi vitamins and met with a friend who is a nutritionist to see if there are other tips she may have. But it's hard to stick to a specific diet when no one can confirm that it will make a difference! I have started eating kale and I'm shocked that I actually like it, but eating is still a struggle everyday. I know part of it is society, every time I turn on the news there are more stories about "pink slime" in our meat and arsenic in our apple juice (thanks Dr Oz for freaking me out!) so I don't know what to think. As a society we're much more aware of our food and everyone is an expert on what the "right" diet is. Meat or no meat? Do I go vegan and eliminate meat and dairy? I know processed food is bad but it's everywhere! Yet I look around at friends and colleagues as they down these very foods all the time and appear to be just fine. I do try and cook at least twice a week and generally Ross and I are pretty healthy, but everyone has their vices (my recent one is s'mores). And when I think about it, when I was in the hospital recovering from the stem cell transplant, they had no problems feeding me bacon and cheeseburgers.

And it doesn't end with the food...there was an article in a magazine recently about the BPA chemical in plastics and the type of plastics you shouldn't have in your house and how they (could) cause cancer. Yikes, that's all I needed to hear, I went like a crazy person through our cabinets and checked the bottom of each plastic container. A friend also mentioned to me that getting a fabric shower curtain instead of a plastic shower curtain might be a good idea because of the heat during the shower combined with the plastic could release bad chemicals. I took a few chemical ridden showers before I finally gave in and bought a fabric one and now I instantly feel better. I'm also in the process of trying to only buy non-toxic cleaning supplies because I clean our apartment every Sunday and have no idea what stuff I am breathing in. Plus there's the controversy about non-stick cooking pans and how they are bad for you....I could just go on and on...

Now I know what first time mothers feel like when they worry about their newborn baby and the toxic world...I can barely handle my anxiety about myself, so I can't imagine what I'll be like with a child! I miss my blissful days of munching on french fries without worrying about the oil it was fried in.

I try to comfort myself by thinking of uber healthy people that were also diagnosed with cancer --like Lance Armstrong and Sheryl Crow -- they both are the picture of health and yet it still happened. So I guess for some people it just happens, no matter what you do. I was shocked and devastated when one of my idols, Giuliana Rancic was diagnosed with breast cancer. I've been watching Giuliana's reality show since the beginning and cried as she fruitlessly tried to have a baby because I worry so much about my own fertility after this cancer crap. Although we're nowhere near ready to be parents now, Ross and I do want kids one day and as my treatment is prolonged, it makes me think about it even more (actually all the time). I had an ovary removed in 2010 to preserve my fertility but the procedure is still very new and nothing is guaranteed. Plus it doesn't help that a lot of my friends are having babies now. Sometimes it's hard to feel happy for them when they're experiencing something so joyful and I'm still experiencing something so horrible. Then I feel like an awful friend for my jealousy and resentment. It's a vicious cycle and I can only hope that having a baby will come easy after everything I've been through.

Anyway, watching Giuliana's struggle made me relate so much to her because she couldn't get what she wanted either. And when I watched her say she had breast cancer on the Today show, my heart dropped. I mean really? Hasn't she been through enough?? Life just isn't fair. Yet she's another example of a healthy person, she's works out and eats a clean diet and she was still diagnosed with a fairly aggressive breast cancer. So I just want to throw my hands up and say it's in God's hands, because anything can happen, no matter what you do to prevent it.

Thursday, April 5, 2012

Encouraged

Ok, so here we go again! I had a PET scan this past week and I didn't tell anyone except my family because frankly I didn't want anyone to ask me, "how did it go?" before I even heard the results (I had the test on a Friday and didn't get the results until Wednesday, so that's A LOT of time for me to over analyze!) Scan time just sucks. It's a depressing cycle of anxiety, sadness, and stress and I wanted to alleviate as much of that as possible.

And keeping it quiet seemed to work. In the past, in the days leading up to a PET scan I constantly think, "By this time next week I'll know" or "By this time tomorrow I'll know" and I freak out, making bargains with God like he's Santa Claus ("if it's a good scan, I'll never yell at Ross again about leaving his socks on the floor, I swear!). I usually cry, pray and hope that I'll get good news. This time I was a little more zen about it and didn't cry until I was actually in the room, waiting to have the test. Unfortunately I've had a lot of PET scans at a lot of different facilities and each one is different (I've changed each time I changed doctors and my current doctor just switched from NYU to Columbia). In one place I was allowed to read magazines as I waited (you drink a nasty substance that has to flow through your system for an hour before the test), in another facility there were no mags, but I could watch TV. The last test center I went to, no mags, no TV but a radio to listen to. This new test center...nothing! Just me and my thoughts alone in a quiet room. Seriously? I never want to be alone with me and my crazy thoughts. So I started to get a little emotional and then fell asleep (as I usually do!) and was totally groggy when it was time to go in the room with the machine. The fact that the process is different at each PET scan center bothers me the same way the TSA at the airport bothers me (in New York I can walk through a regular detector if I asked to, in Miami I had to get a pat down because I refused to walk through the new see-through-your-clothes machine and was denied access to walk through the regular detector when when I said it was for "medical reasons" Argh!). That's a long drawn out example, but basically nothing is consistent! And that's just at PET scan centers in NYC. When I look online at other cities, I also see that the process is different. I guess in my case it doesn't matter because across the board, each test has always shown disease present in my body.

But anyway, so the news was good, or "encouraging" as my doctor said. He came in with his usual friendliness and said that beautiful four letter word, "good" and my heart was able to climb back into my chest. Thank God! I told the nurse who also came in to take my blood pressure to wait a second because I was sure my BP and my heart rate were through the roof! The rest of the team came in with smiles on their faces as my doc explained the test.

It's all complicated and as I've learned these damn PET scans aren't a perfect test (clearly, given the difference I've seen in how the test is executed). You could get a false positive if you ate carbs before the test or worked out. You could also have very very small disease that isn't detected by the test. But what they usually look for is the size of the lymph nodes and whether they have grown or shrunk and the SUV (standard uptake value) level. Naturally, a higher level is usually considered bad, but when I asked what was "normal" SUV I was told it's different for everyone--so once again, nothings perfect. In my case with this recent scan, lymph nodes had decreased in size but the SUV levels had increased in some areas--however, my doctor feels that this is not necessarily a bad sign. The drug I am taking, Revlimid, increases your red blood cells and makes them better fighters against the bad cancer cells, so the theory is that growth of the red blood cells (aka the good cells) would show an increased level of SUV. This goes against what I always thought (high SUV= bad) but my doctor is incredibly smart and when he explained it, it made sense. However (here I go being a Debbie Downer), the true test will be my next PET scan because hopefully by then, the SUV levels will have decreased. Another encouraging fact is that my ESR ( a bloodtest used to determine how much inflammation is in the body) has decreased, and that is a great sign. I feel like a scientist with all this info (and I'm probably saying half of it wrong because I can only know so much or i start to go crazy)

Given my history of good PET scans when I first start a new treatment and then not-so-good scans afterwards, I'm not ready to pop champagne yet (incidentally I do have a bottle of champagne that my BFF Danielle gave me in Nov '09 when I thought I beat cancer the 1st time...it will be popped one day!) I do want to be positive though. The good thing is that I feel great! I almost feel as good as I did pre-diagnosis and my doctor said that is one of the most important factors. If I felt bad and was losing weight, he would be more concerned. But I'm feeling good and living an (almost) normal life. Case in point: Ross and I were walking down the street the other day when I saw the bus that I needed to take to get back to work and I ran after the bus to catch it before it drove off. Now, I normally don't run after buses I think people look silly running through the street and this past year I literally couldn't even think about running! But that day I needed to catch that bus or I would spend 20 minutes waiting for the next one, so I caught it and when I sat down, I texted Ross to tell him I was sorry I just ran off and didn't really say goodbye. He said no problem, because he remembers a time when I couldn't run, so it was fine. And I remember when I couldn't run either, so for once I didn't care if I looked silly because I could run! So for now I would say things are good. :)