Cancer Sucks, part 2

As promised, I have sent questions to two gamers who are near and dear to my heart who were unfortunately diagnoses with breast cancer. Our second guest is the effervescent Madelyn Levine.

G-R-P: Tell us a little bit about yourself and your gaming background. 

Maddie: I am 33 years old and grew up in Lynchburg Virginia with my parents and younger sister. I was the yearbook photographer for 3 years in High School and went to Bridgewater College with a degree in History with a minor in Spanish. When I was in college I met my ex-fiance and he brought me to my first LARP. I have been playing in OWBN for 13 almost 14 years now and I have been loving it ever since. I think the thing that keeps me enjoying it is a refuse to be a Coord, a Council Member, or an ST. I like to think of myself as Dorothy, I pay no attention to the man behind the curtain and stay blissfully ignorant of the qualities that make people leave or enjoy the game less. 

I have played a few tabletop games but find them to be a little too math heavy for my taste. I enjoy playing Munchkin and Cards against Humanity. I also enjoy playing Cranium, Mahjong, Wise and Otherwise, Bethump'd, and Trivial Pursuit among other board games.

When did you first suspect you had beast cancer? 

On July 4th of 2009 I came home and felt a lump, probably the size of a lemon, in my left breast. I thought I had just bruised it rough housing in the pool with my friend's daughters. I left it alone for 3 months because I thought it was just a deep tissue bruise and needed time for the blood to get reabsorbed or dissipate.

When were you diagnosed? How old were you at that time?

I then had an appointment with my OBGYN in October and told her about the lump that I thought was a bruise. A week later I had an ultrasound. Then a week or two later I had an appointment with a breast surgeon and she just thought it was fat necrosis but ordered a biopsy anyway. I had one and it was kinda painful. I came back a week later, alone, because she made it sound like it wasn't anything too serious. She told me I had cancer. I was 29. Alone in the exam room and my world was crashing down. She let me borrow her office to call my Mom and my husband, Sooper. I then went for my first appointment with my oncologist, Dr. Felice. I had a PET scan and found out that it had metastasized to my liver, lungs, and spine.

How old were you when you started treatment? 

On December 8th, 2009 I had my port put in and on December 21st 2009 I had my first chemotherapy treatment. I had chemo for 10 months and then started having toxicity issues and stopped treatment for a few months, then started back on a different drug for 6 more months. Then on August 7th 2010 I had a lumpectomy. Then in October 2010 had radiation. Since July of 2010 I have been on Tamoxifen. 

How has breast cancer affected your day to day life? 

 I started feeling well enough to work for about 2 months in early 2012 and because the job was unrealistic in it's expectations I had to leave. I started using a representative with the Department of Rehabilitative Services but they weren't able to find anything for me. I will eventually go back to them again, hopefully at the beginning of 2014. 

I had a recurrence of cancer in my hips in 2012, had radiation, and still have pain in my hips that I think I finally have under control. Because of all the pain meds I've been on I was hospitalized for a week and a half in September of 2013 with severe vomiting for about 3 weeks and I hope that won't happen again. 

For now I am just trying to feel better and get back on a normal sleep schedule as the steroids I was on when I was on Chemo caused me to have insomnia, which I still suffer from even now. 

Your ability to game? You play Nosferatu, did you use your appearance in 

character in any way? 

 I did have times when I wasn't able to game due to nausea, or tiredness, or just generally out of sorts and I know I was missed and worried about.When I started losing all of my hair in clumps I eventually just shaved it down with my husband's beard trimmer. I never went so far as shaving it with a razor. Some of my friends as a show of solidarity shaved their heads and it made me proud and it made me feel loved. I mostly just lived in a bandana, a hat, or sometimes a wig when I was feeling adventurous, cold, or exotic. I eventually had my hair grow back and now it's just on my nerves. I had to relearn how to have hair, it being on my neck, the warmth of it, and putting it up so it isn't in my face. 

My Nos didn't really have any issues because the specific repugnant traits for her are tusks and elfy ears. It was easier to do the ears when I didn't have hair in the way.

How has the gaming community helped you through this time? 

My friends at game were the thing that spurred me on the most. They started a SooperMad retest and raised money for Sooper and I to function in our everyday lives. I look forward to playing weekly and still have little time that I leave the house during the week so most of my weekends are spent with friends and hanging out with them and gaming. 

Have you been determined to be cancer free? When did that happen? 

I was originally deemed to be in remission in June of 2011 but had a recurrence in 2012 so it's complicated. For now i'm stable nothing growing or changing. 

What issues still give you difficulty? 

Because the radiation weakened my bones a bit and the cancer in my spine is hard to treat I still have bone treatments monthly to strengthen my bones to keep the cancer from getting back in to them. Because my cancer is estrogen positive I also have shots to shut down my reproductive system so I have no estrogen created in my body. I am in chemically induced menopause and probably will be for the next few years. Breast cancer is said to have 5 year recurrence rate so I expect to be a few more years still in this process.

What, if anything, positive things have you been able to take away from this experience? 

One of the positives I have taken away from all of this is that modern medicine has come along way. Ten or more years ago my cancer diagnosis would have been more of a death sentence. Modern medicines, nutrition, radiation, and chemotherapy and how they interact, the research of how they work, and all the studies to get where we are today medically are very appreciated. Sometimes you just see people as awful human beings, stupid, violent, uncaring, and selfish. Another positive is that I saw the soft underbelly of humanity and the charity that raised some money to help me in my recovery journey. Scares That Care was always a charity I was involved with periferally but not directly. A lot of charities make money for themselves first and only really give a small percentage of that money to an actual cause. There are few genuine charities where 100% of the proceeds go to the recipient or recipients; Scares That Care is one of those charities. The people who run the charity are volunteers and make no money off of the donations and genuinely help 3 struggling families a year with various conditions yearly. 

What do you think others should know about cancer, gaming or in general? 

My advice is just to know your body. Whether you do it yourself, make it part of your sexual experiences, or have a doctor examine you, feel every part of your body, look at freckles and moles, evaluate if something you think might be a minor issue could be something more serious. Get a physical sometimes. Every year may not be possible but at least see a doctor a few times when you aren't sick to evaluate anything troubling, something that feels or looks wrong, or if you are coughing up, peeing, pooping, or excreting blood from anywhere. It could save your life or the lives of others if you see someone ignore something or ignore it yourself.

As for gaming you should at least once in your life play something that is the exact opposite of your personality and lifestyle. I'm not saying you should take up playing a racial supremacist with a penchant for necrophilia, just that if your a quiet or shy person you should play a loud person boisterous person just to see if you can.

Once again, October is Breast Cancer Awareness month. Please remember to complete your self-exams monthly and take the best care of yourself you can. 1 in 8 women (approximately 12%) will develop invasive breast cancer in their life time. Breast cancer isn't just a disease of women, approximately 2,200 new cases of breast cancer is diagnosed in men each year, about 1:1,000. 

You can find more information at the National Breast Cancer Awareness Month website http://www.nbcam.org/, the Susan G. Komen site  http://ww5.komen.org/, and the American Cancer Society website http://www.cancer.org/healthy/morewaysacshelpsyoustaywell/breastcancer?gclid=CMzq95iHuLoCFUyd4Aodb0kAmw

Enjoy Maximized Empowerment!