This weekend is shaping up to be a Big Girl Pants kind of weekend, and this weekend is one of the reasons I started this blog. Today I will be heading in for my first set of scans since October. Scans are at the heart of the metastatic breast cancer journey. The fact that I need scans every three months is what it means to not have a cure. My doctors do the best that they can. My doctors are the best in this field. As one of my favorites put it, "we carpet bombed you" with chemo. We do the most aggressive surgery. We consider all options. And then, we wait and we watch.
The hardest part of scans is not having my morning coffee. As soon as I get out of that tunnel I make a beeline for Starbucks! I have to starve myself for 4 hours before the scan. The other annoying part is the sheer time I must devote. I have to arrive 90 minutes before my actual appointment time. I've never understood why they don't just schedule the scan for the hour when I have to arrive, but I'm not in health care. There must be some bureaucratic explanation.
When I arrive 90 minutes early, I am given a lovely little cocktail of Crystal Light and Barium. They are so nice as to ask my preference- Iced Tea or Fruit Punch. I've tried Barium with any number of things and unless its a stiff alcoholic drink strong enough to overpower the metallic taste of the medicine, it is no difference. I sit there for 90 minutes and drink three whole bottles of this stuff intended to coat my insides with "contrast". The Barium tastes like a mixture of metal and dirty feet. It's not so offensive as to make you get sick, but there is a gag reflex.
Now you may recall, I was diagnosed as a senior in college. While some may think that is incredibly unfair, I actually see that timing as a gift from God. Why you may ask? Well...I bring my college drinking skills to the table at scan time!
While all the other old ladies are sipping their contrast with straws, I take a deep breath and throw that baby back. The nurses tell me my nauseousness after the scan is over would be better if I sipped, but I'm young enough to still have my eyes on the prize. I'm 26, I'm allowed to throw caution to the wind when it comes to thinking about the end results of my actions. And so I chug. I want to go to Party City one day and find a pink beer bong and bring it with me to my next appointment. I can picture it now, I am going to be going down on one knee in my gorgeous hospital robe holding the beer bong up high and downing that Crystal Light in two seconds. Then I'll teach the rest of the waiting room!
After 90 minutes of waiting, you would expect the actual scan to be a big deal, but it is actually like that roller coaster ride at the amusement park. You wait hours in line and then the experience is way underwhelming and only lasts for .3 seconds. I have timed the CT scan, and it is never more than 10 minutes long.
But then the real waiting begins.
At the beginning of my cancer journey, when I first moved to Boston in 2006 and began going to Dana Farber, I would spend a whole day at the hospital. I had my scan in the morning, break for lunch and then go see the doctor for results in the afternoon. But then one time, the results came back bad. I had probably only been in Boston for 3 months. My hair was just sprouting. I was joyfully cavalier that I had beaten it. This cancer thing was just one year of my life. Just one horrible year. And then, the scans. I came to the results appointment alone. That was the last time I ever spent scan-time alone.
Since my journey has been so unpredictable and outside of the usual realm of cancer patients, my doctors tend to get creative with my treatment plan. Many doctors weigh in on statistics and treatment options and then my doctor and I get together and usually end up with a plan that is some where in the middle of the whole spectrum. I really enjoy being a partner in my care and knowing all of the options and all of the pros and cons. Well that first recurrence back in 2006, they saw the tumor in my liver grow. My doctor had just gotten the results minutes before my appointment and she came in unsure of how we would proceed. She had not had ample time to think about a game plan. It was an all around unpleasant experience because the news was bad enough but leaving without a game plan is enough to send me over a steep cliff. I must always have a game plan. Knowing that I have options keeps me sane.
So now, I get the scans on Friday and get the results on Monday. It makes for a difficult weekend, but my mom flies up to play with me and we fill our time with all sorts of fun things. This weekend, mom is teaching me to garden. We are also going to get the usual mani-pedi action. We have a list of shopping we need to get into on Newbury Street. The Big Man and I will take Mamma to our favorite restaurants. The days with mom fly by and I find that I forget about the impending appointment that could potentially take this beautiful life and throw it all to pieces again.
I don't remember until I'm sitting in the waiting room.
So everyone, enjoy this weekend for me. Get out there and take a brisk walk. Go to a party. Go to a hip restaurant. Dance. Have an amazing weekend. Love Life. Because on Monday, my life could change. I will of course update everyone as soon as I know anything.
Showing posts with label wellness. Show all posts
Showing posts with label wellness. Show all posts
Friday, March 26, 2010
Wednesday, March 3, 2010
How Are You Doing?
Think about the phrase "How are you doing?" Everyday, in every city across the globe, hundreds of people are asking that very question. Mothers ask sons over phone calls, girlfriends ask over a glass of wine, long lost friends connect over coffee, doctors ask patients as they give a pat down.
Sometimes, like during high school reunions, people don't really care about the answer. Instead of listening to the answer, the questioner simply prepares for when the same question comes back her way. But every once in a while this simple question is posed in such a way that makes the heart sing.
I notice a lot when people ask me how I am "doing" because I never quite know how to respond. When I answer the, "How are you doing" with the expected, "Fine, thank you and how are you?" I am almost always lying.
Five years ago, on June 3, 2005, I was diagnosed with Stage IV breast cancer. I was 21 years old. It was two weeks after my college graduation. I had no family history of the disease.
Five years ago, some people started to dread asking me 'the question'. Five years ago, some people I have never met and may never meet started asking how I was doing. And five years ago, for the first time ever, I noticed how wonderful and liberating it can be when someone asks, "how are you doing?" and really, truly wants to know.
As my new blog title implies, life with Stage IV breast cancer requires a pair of Big Girl Pants. If you're going to enter my world, you better put on a pair of your prettiest party pants and buckle them up tight, because my answer to "How are you doing?" is always long winded!
My long winded answers are what prompted this blog. For years, I've been filling people in on my latest adventures in cancer over coffee or dinner, at cocktail parties or in mass emails. I bring people up to speed in 500 words or less. Over five years struggling with recurrences, I am slowly realizing that my life will never be normal enough to sum up over dinner. Instead, life with Stage IV cancer means that every day major news is happening. Every month a new hurdle pops up. Every week a new drug is tried. Every evening we pray.
Sharing my story over dinner, over coffee, at weddings, is unfair for my friends and family and it is a disservice to the huge hurdles that I overcome every single day. I plan to use this blog to share those day to day struggles.
I plan to update this blog everyday, or at least once a week, with reflections on where I've been, updates on where I'm headed, and general thoughts about life and about facing down death.
In an ideal world, people will actually read this and share it as well. I am also giving birth to this blog because I want to raise awareness about living life with breast cancer. Not beating it, not surviving it, not closing that door, but truly, happily, sadly, thoroughly and completely living with it.
I joke sometimes about being scary. I really am not joking.
My story scares people, especially fellow cancer patients. I am the worst case scenario.
I was diagnosed way late. By the time someone sent me for a mammogram five years ago, the cancer had traveled from my breast to my liver. One doctor gave me a 16% chance of celebrating my 30th birthday. Over the past five years, I have had three recurrences and 5 surgeries. I have been on nine different types of drugs. My cancer just won't quit. The doctors can sometimes be quite grim about my "prognosis"
But I am living well. I am living fully. I am happy. I am one of the happiest people I know. I just got married in August (best wedding ever!!) and some days I call my husband in the middle of the day to just thank him for the amazing life that we have made together. I created a song that I sing (way off tune!) while cooking dinner about how much I love my little life. I think these facts can help people, even though my situation might scare you.
It is this happiness that keeps me motivated when life isn't very happy. This day to day happiness makes me a fighter.
So let's kick off this journey by sharing one of my most favorite-est pictures ever. This is me with Stage IV cancer.
Do I look sick to you?
Does it look like I might feel sorry for myself?
Now I'm off to a doctor's appointment and will update everyone shortly! I hope there will be someone reading.
Sometimes, like during high school reunions, people don't really care about the answer. Instead of listening to the answer, the questioner simply prepares for when the same question comes back her way. But every once in a while this simple question is posed in such a way that makes the heart sing.
I notice a lot when people ask me how I am "doing" because I never quite know how to respond. When I answer the, "How are you doing" with the expected, "Fine, thank you and how are you?" I am almost always lying.
Five years ago, on June 3, 2005, I was diagnosed with Stage IV breast cancer. I was 21 years old. It was two weeks after my college graduation. I had no family history of the disease.
Five years ago, some people started to dread asking me 'the question'. Five years ago, some people I have never met and may never meet started asking how I was doing. And five years ago, for the first time ever, I noticed how wonderful and liberating it can be when someone asks, "how are you doing?" and really, truly wants to know.
As my new blog title implies, life with Stage IV breast cancer requires a pair of Big Girl Pants. If you're going to enter my world, you better put on a pair of your prettiest party pants and buckle them up tight, because my answer to "How are you doing?" is always long winded!
My long winded answers are what prompted this blog. For years, I've been filling people in on my latest adventures in cancer over coffee or dinner, at cocktail parties or in mass emails. I bring people up to speed in 500 words or less. Over five years struggling with recurrences, I am slowly realizing that my life will never be normal enough to sum up over dinner. Instead, life with Stage IV cancer means that every day major news is happening. Every month a new hurdle pops up. Every week a new drug is tried. Every evening we pray.
Sharing my story over dinner, over coffee, at weddings, is unfair for my friends and family and it is a disservice to the huge hurdles that I overcome every single day. I plan to use this blog to share those day to day struggles.
I plan to update this blog everyday, or at least once a week, with reflections on where I've been, updates on where I'm headed, and general thoughts about life and about facing down death.
In an ideal world, people will actually read this and share it as well. I am also giving birth to this blog because I want to raise awareness about living life with breast cancer. Not beating it, not surviving it, not closing that door, but truly, happily, sadly, thoroughly and completely living with it.
I joke sometimes about being scary. I really am not joking.
My story scares people, especially fellow cancer patients. I am the worst case scenario.
I was diagnosed way late. By the time someone sent me for a mammogram five years ago, the cancer had traveled from my breast to my liver. One doctor gave me a 16% chance of celebrating my 30th birthday. Over the past five years, I have had three recurrences and 5 surgeries. I have been on nine different types of drugs. My cancer just won't quit. The doctors can sometimes be quite grim about my "prognosis"
But I am living well. I am living fully. I am happy. I am one of the happiest people I know. I just got married in August (best wedding ever!!) and some days I call my husband in the middle of the day to just thank him for the amazing life that we have made together. I created a song that I sing (way off tune!) while cooking dinner about how much I love my little life. I think these facts can help people, even though my situation might scare you.
It is this happiness that keeps me motivated when life isn't very happy. This day to day happiness makes me a fighter.
So let's kick off this journey by sharing one of my most favorite-est pictures ever. This is me with Stage IV cancer.
Do I look sick to you?
Does it look like I might feel sorry for myself?
Now I'm off to a doctor's appointment and will update everyone shortly! I hope there will be someone reading.
Labels:
breast cancer,
cancer,
chemo,
health,
inspiration,
medicine,
survivor,
survivorship,
wellness
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