I'm sure I've eaten at least 6 pomegranate seeds for every year I've lived... now I'm watching my world careen back and forth between summer and winter. Enjoy the ride.
Academia, Again
Back in school. Class starts in half an hour, though, so I really shouldn’t be posting right now - too much to read, too much to write, etc. Taking two poetry classes, so there’s a lot of writing. Luckily haven’t had to workshop anything yet, but it’s only a matter of time. This school uses Blackboard a TON, which is completely weird for me, as is the fact that so many people take notes on laptops now. I feel old. I can’t even really write stuff on my computer - definitely not poetry - so I use my laptop when I need to, but I still handwrite all my notes and my poems before I type them up to submit online. Tried working on a poem using the computer the other day, but it just doesn’t work for me. Oh well. Papers might be different though - I used to start them on paper but once I got going I could switch to my computer relatively easily, so that might still work. We’ll see, I guess. Still catching up a lot because I started late, so it’s definitely time to stop wasting time.
Fundraising for young adults with cancer
If this post looks vaguely familiar, that’s probably because I already posted my Crowdrise link about a week ago with a brief explanation. Here’s the longer one:
On average, every eight minutes, a young adult (age 15-39) is diagnosed with cancer in the US. On average, one young adult per hour will die of cancer each year. There are 14 million cancer survivors in America; 10% of those people are under 40 years of age. Young adult survival rates have not improved at the same pace as those for cancer patients; our incidence rates have increased faster than those for any other group, and cancer is now the number one killer of young adults. We cannot afford to ignore this problem anymore.
When I was 26, my mother died, very suddenly and unexpectedly, of heart disease. She gave a speech in front of a roomful of people in downtown Washington DC, sat down, and collapsed. I hadn’t finished school due to an autoimmune illness that had yet to be accurately diagnosed, and had only moved out of my mother’s house three months earlier. Like my mother, I rarely went to the doctor unless I had to. I believe that hers was a preventable death. I was a physically active vegetarian, and doctors tended to take one look at me and try to get me out of their office as quickly as possible so they could use their time treating patients who might actually have something wrong with them. They did not believe that there was anything wrong with me.
I decided that I was going to get aggressive about my own health, that my mother would have wanted me to take better care of myself than she did. Two years and an endless stream of frustrating doctors’ appointments later, an allergist who was merely scheduled to give me a scratch test decided that something felt off and did a more thorough exam. She sent me to get a sonogram, which showed that I had a solid “nodule” that was approximately 2.9x3.0x3.2 cm. From there I went to a surgeon who took a biopsy of the tumor and left a message on my voice mail telling me that it was malignant; at my next appointment, he grew angry when I asked some questions and told me to find a new doctor. I didn’t even know how to do that.
So far, despite this, I am very lucky; my thyroid cancer is papillary, the most common type, and is very treatable, although of course my diagnosis has changed my life; I will always be on medication, and I can never allow my health insurance to lapse for 63 days. A lot of other people my age aren’t so lucky. Some of them can’t afford insurance or the huge bills that accrue even when you have good coverage. Some of them let their insurance lapse after college while waiting to get a job, or, like me, used up every last day of our parents’ COBRA. Those of us who are able to get individual insurance pay unbelievably high premiums. My insurance company has tried to drop me several times despite laws that say they aren’t allowed to. I’ve gone through several stretches of time during which I officially didn’t have insurance, only to have it reinstated retroactively, meaning I paid for the months when I’d kept myself from seeing doctors because I didn’t know whether the appointments would be paid for.
Young adults with cancer have to endure chemotherapy or radiation or painful procedures or terrifying waiting periods, and we have to do so under different circumstances from other age groups. We are too old or too far away for our parents to care for us; we are in school; we are new at our careers (if we’ve gotten that far) or are in our first jobs. We are living in strange cities, away from the network of family and friends we grew up with and went to school with, and those friends have scattered or will scatter as well. For those of us who do have good friends, significant others, or new spouses, we’re finding that they have no idea how to deal with our illness; in many cases, it is the patient who has to tell her friends how to react. We are discovering who our true friends are, and we are dealing with things that other people our age never have to think about.
Young adults with cancer have different needs from other age groups. Our experience of our illness is different from that of a child or an older adult. We are often in periods of transition; sometimes several at once. We often find ourselves knocked off the expected path with regard to our education and our careers and must find a way to salvage what we can, struggle through, or take a break and then find a way to resume our “normal” lives. After my diagnosis, I spent hour after hour researching my diagnosis, searching for information, always more information. I have no idea how I stumbled across stupidcancer.com , but it was a critical moment for me. All of the resources that I didn’t know existed were suddenly in front of me, along with information about my local chapter, and exactly the attitude I needed: irreverent, supportive, upbeat, and even angry when it was appropriate.
Last year, I went to OMG! Cancer Summit, an annual event made possible by I 2 Y - the I’m Too Young for This! Cancer Foundation, in New York City. There were seminars on the challenges of survivorship, fertility, dating, and any number of other topics. I was surrounded by other young adults with cancer diagnoses and their partners or caretakers. I met people who had founded organizations I knew or had contacted for help; I heard a talk given by a woman whose book I had read. I left that weekend feeling strengthened, energized, and hopeful.
Next year, the summit will take place in Las Vegas - the first time the organization has left its home city - and they need our support. We are using the website Crowdrise, which automatically enters donors into drawings for prizes (donate $29 by 1/15/12 to be entered to win an iPad 2; donate or raise $31 after 11 am EST and be the first to e-mail Crowdrise about it and you’ll get a free t-shirt. For a list of all current promotions, check http://bit.ly/9zmSWA ). Donations are tax deductible, and individuals and groups are competing to raise money - if I raise enough, the conference fee will be waived; more fundraising can get me special seating at conference events and similar rewards.
This is a really good organization that showed up when no one was even thinking about young adults with cancer as being a group with different needs from other age groups; before anyone really knew what those needs even were. They’re figuring it out now, and I want to be involved and active and turn my diagnosis into something that makes me stronger and more aware and more connected with my community. This organization has local chapters all over the country with regular happy hours and mini versions of their yearly conference where they cover only one topic instead of a half dozen. They are helping my friends and they are helping me, which is why I want to do my best to support them as they reach out to the people who, ready or not, are getting the scary phone call or the frightening follow-up visit, not knowing that their entire world is about to change, every 8 minutes.
If you can afford to donate any amount, please do so. If you can’t afford to donate, please repost this. If you can think of any ways I can creatively raise money - for example, if you can donate things that I can sell or auction off - please let me know. If you have friends who might be able to help who aren’t on this site, copy and paste this into an e-mail. If you know they won’t read the backstory, just send them the link, and ask them to send it on.
If you want any more information from me about my experiences, this organization, or anything else, please feel free to contact me directly. If you can edit this rambling mess into a coherent pitch for me to mail to family members or friends, let me know - I definitely might take you up on it. Remember that the organization I’m raising money for is still young; it is growing and expanding and even if the help they offer doesn’t apply to you today, one day they might be helping your friend or your colleague or your family member.
The following website will show you how my current fundraising is going and how you can use the site to donate money to my cause. It should be up and usable until the summit starts on March 30th, 2012, when with any luck I will be in Las Vegas. If you have any problems, their customer service is great. That also means that I will be fundraising on my birthday, so if you were considering mailing me a card or 5, save the money and send me an ecard telling me you just made a donation.
http://www.crowdrise.com/omg2012/fundraiser/StephanieLawton
Thanks!
Stephanie
PS I know my story isn’t the most heartbreaking or the most tragic or even the most interesting, but there are thousands of people in this country with stories that are, so feel free to pretend that you just heard one of theirs. Ask me for more information or about the people I’ve met. And finally, if you know a young adult who has cancer, send them to www.stupidcancer.com , and feel free to ask me for information about other websites, resources, or which books I personally found to be helpful.
Rabindranath Tagore
My Crowdrise 2012 OMG Cancer Summit Fundraiser 
I’m raising money to help support the I’m Too Young for This Cancer Foundation’s annual OMG Cancer Summit. I had the opportunity to attend this summit last year and found it to be incredibly incredibly helpful. Ask me anything if you want more information about the organization or my own involvement with it, and please please reshare this link - no donation is too small. If you follow the link you’ll find a little bit about my story and what this is - or I could post a more coherent explanation sometime when I don’t have to be awake in 5 hours. Thanks!!!
nothing much
I haven’t had anything to say in a long time. Things fell apart and I was too exhausted to rebuild them. Unfortunately life doesn’t really care how tired you are, so I’m going to have to figure them out pretty soon regardless. Luckily I am finding support and reminding myself that the last time I did this I was doing it myself even though it felt like I had someone helping me, which means I can do it myself again even though it doesn’t feel like I have anyone helping me now.
Logically I am pretty sure things have to get better. I am working on feeling like I know things are going to be good in addition to knowing it intellectually.
There’s just been a lot of shit all at once, I guess. My sister’s gone. My roommate’s leaving. Life is tough. Tiny tiny tiny violin. I’ll figure it out.
ultimate
Started playing frisbee again. I am regular out of shape but also clearly not healthy yet. I think a lot of it’s anemia, but I can’t really be sure. A lot of it is just joint problems. Some of it is probably thyroid. There is probably some other stuff. At least I’m playing, though. It’s something.
