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!

No matter where you go, there you are. ~ Buckaroo Bonzai

This has been a week of revelations for me, some for the better some not so much.

I had the distinct pleasure of going out on a date with my (second) best guy, my son Thomas. Last night was the Mother - Son Social at school. We got our Halloween costumes on and headed out. We had a lot of fun, until we got to the dancing portion of the night.

Thomas loves to dance and I love to dance. But I haven't danced or participated in any real physical activity for some time. The past couple of years have been rough, but I underestimated how low my stamina had gotten. A couple energetic dances in and I was done. It was a real eye opener. We stayed for a while and he did have a good time, I just wish that it had gone better on my end.

I have resolved to improve my physical activity, which with winter rolling in early, could be tricky. I will not allow my body to prevent me from spending time with those who matter most to me. I will not embrace the "Thin or Else" message we see in today's society. I will communicate with my children that my reasons are for the purposes of better health. I doubt any of that will be necessary, since they seem well grounded, but I over prepare.

In keeping with the message of self-love and being with my family, the past three weeks I implemented "girl time" with Kate, which has mostly been us doing each other's nails and hanging out for a bit. It has afforded us about an hour of time where we can sit down at a table together, share some physical contact of a nurturing king and talk about whatever. Today Kate told me she really likes doing this. I felt that little thrill of victory, knowing that in the years to come this closeness might ebb and flow, but at least for this moment I know I have beaten this particular level's boss fight.

Being healthy is not just a body or mind thing, it's a holistic and whole person kind of thing. I am happy with who I am on the inside, now I need to get the outside back up to par because there are more adventures waiting to be conquered!

Enjoy Maximized Empowerment!

Cancer Sucks, Part 1

October is Breast Cancer Awareness Month. Breast cancer, any cancer, strikes the fear in the hearts of people when they hear it. I have several friends who were all told at one time or another that they had breast cancer. Fortunately all of them are survivors. If there is one thing I have learned from my time as an oncology nurse and supportive friend, you can never love your friends enough, you never know how or when, but you do know you will never have enough time with them.

Two of my friends have been gracious enough to share their stories with me and you. I know both of these wonderful ladies from my time in the One World by Night gaming organization (old World of Darkness). Ironically, they both played Nosferatu.

First up, Mary-An Tedder of California.

GRP: Tell us a little bit about yourself and your gaming background. 

M-A:    Ah, the dreaded, "tell me about yourself" question... Well, My name is Mary-An, I'm a shy introvert who still wants social interaction and somehow ended up playing an extroverted harpy, among other things.  I love gardening, animals, reading, writing, music, cooking, creating things from silly paper snowflakes to ball gowns... and gaming.  When it isn't too full of drama, anyway.  

     What I like most about gaming is the social interaction and the acting.  For a shy person, that sheet of paper is a safety net, in a way.  It gives you a sense of both freedom and protection, because it's "someone else" that people see.  And then, later, when the paper goes away (as all characters do), the people around you are already people you know, who may or may not have character sheets that you also know.

     I have done RPing of various types for most of my life, but LARP was different.  Something my then-teenage son found that we went to check out, to see if we thought it was something he could do (he wasn't 18 yet).  We ended up making characters and staying, in addition to signing his permission slip.  And it was addictive.

     I am a massage therapist by trade, have been for many years.  My job is not a high-stress one most of the time.  This does not always apply to the rest of my life, though, and I am unfortunately just a bit too empathetic at times for my own good.

     MY cancer was a complete surprise.  I and most of the people around me had been ill with a flu that included swollen lymph nodes, so when I found a swollen node in my armpit, I wasn't surprised.  My partner had one, too, and was recovering, and my symptoms were lessening.  Then it suddenly went from the armpit to my right breast, swollen and warm.  Obviously this was not normal... so I went to the doctor.  She thought the flu had led to mastitis and sent me home with antibiotics.

     We decided to do a mammogram anyway, just to be safe, and the doctor wrote the recommendation in such a way that if needed, an untrasound or something could also be done.  When the mammogram showed a small mass but was inconclusive as to what type (it could have just been swelling or infection), the ultrasound was done.  It, too, proved inconclusive, and the tech asked if I wanted to go ahead and do an untrasound- assisted biopsy.  I agreed.  I still didn't think it would be cancer - after all, I mostly tend to eat very healthy things, I get over illnesses quickly, and all of that, right?

     Meanwhile, my poor partner has been waiting for hours, wondering and worrying that I haven't come back out.  Finally, someone told her that more tests were being done.  At which point, she claims she knew it was cancer, but hoped she was wrong.  Turns out she was right.  The biopsy came back positive for cancer.

     I was 45 years old, and I had breast cancer.  I was... less than thrilled.  This happened in May of 2010.  A lumpectomy was recommended, and I began chemotherapy against my better judgement (I react weirdly to most meds, and chemo meds are something I didn't want to have a freaky reaction to).  There was a great deal of pressure to follow the standard treatment, both from the medical profession and from family.

     Cancer itself wasn't actually that hard to live with - after that first week, there was no swelling, little pain, nothing. Until I started treatment..  That was hard, but only sometimes.  Several days, I couldn't get out of bed because my legs wouldn't work.  It was almost like I had MS.  Other times, I was fine.  I became afraid to make any commitments to anything because I never knew if I would be able to do anything.  My attendance at game (or anywhere) became spotty.

     On the other hand, when I called for a head-shaving and henna party, many of my friends from Game showed up to show their support (and to get henna tats).  I put Heather Pope on the spot, and she ended up doing intricate henna artwork all over my entire head after it was shaved (by my poor, terrified partner).  Actually, I kind of liked the way my head looked bald and covered with henna.

     My Nosferatu had a burned appearance, and most of the princes wanted all Nosferatu to look "presentable", so she tended to wear wigs and other such IC costuming.  Which means that any changes in my appearance from cancer didn't really fit with my Nos's appearance or were covered by her usual costuming.  At least, until I had a mastectomy (the lumpectomy didn't work).  Then, the uneven breasts did sort of fit the character concept.

     On the nights I was able to go to game, I enjoyed the time away from doctors all the more.  I did have to stop being an archon, because I couldn't be available enough of the time for it.  I NEEDED the time away, I needed the interaction that made me come out of myself because otherwise I tended to hermit away or become depressed.  (I swear hermit can be a verb!)  So gaming did help me.  I know I made a lot of people feel awkward, because they didn't know what to say, but they didn't ostracize me or anything (which in my worst moments I was afraid of happening).

     As of my last tests, I was cancer free, but it's time again to get them, and I have been having some symptoms again.  Hopefully those symptoms are only from the nerve damage the surgery caused me and not more cancer.  I am hopeful.  This whole thing is not exactly a battle with cancer, but often a battle with the insurance companies, who often try to get out of paying for expensive treatments, sometimes doctors and technicians (you really have to be your own advocate, or you will be treated like a statistic or a number if you're not careful).

     Here is a link to a song, "The Bald-headed Blues" by Saffire, that sort of fits my idea of this:http://www.youtube.com/watch?v=sNaW6FyiJRI&list=RD029lsKDrL2OmQ     

     Issues that still give me difficulty:  While I was unable to work from surgery recovery (which had a few minor complications that made the recovery take longer than usual), many of my massage clients found other therapists.  After a year of not being able to do massage because it is such a physical job, I had only a few clients left.  A few returned, of course.  So at a time when I needed all the money I could get to try to recoup all the money spent on treatments, I had a lessened income.  

     I suspect this is probably true of most people who don't have mostly sedentary jobs.  I had been told it would be only a few months recovery... until they heard what I did.  Then the time kept extending.  This of course means we got way behind financially, something we are still struggling with.

    A nerve under my arm was cut, leaving me with a large area of numbness under my arm, down my side and down my arm.  It feels heavy, often cold, and a weird tingly-numb semi-swollen sensation all the time that is just strange, but mostly doesn't actually interfere with doing anything unless I have actually overdone it and it really is swollen (as opposed to only feeling like it is).

     I look older, and my hair came back in all grey and thin (a bit of a shock, since I wasn't gray before and have always had very thick hair), and has a completely different texture that I have a hard time styling.  My eyebrows still haven't really come back and are only half there.  And, of course, there are scars that sometimes hurt or itch.

     Mostly, in other words, I am still me, I'm still fine, and cancer has affected me in a lot of ways, but I have not been devastated by it.  I count myself as the winner in this.

GRP: What do people need to know about cancer or gaming?  

M-A: Well, when someone is trying to find their way through any kind of serious condition (cancer being only one of them), drama of any kind isn't helpful.  Telling them the things they "should have done" to prevent its occurrence (most of which I had done anyway, and some of which were kind of crazy), or the things they should be doing now to "get over it" doesn't help them, unless they ask.  Trust me, they've already heard it, most likely, and are already wondering whether or not doing just that one thing different might have made a difference.

    On the other hand, being there for them in any way IS helpful, as long as you let them rest when they're tired.  If you want to go over and help them, do so... but don't just hang around, unless that's what they ask you to do.  DO something.  Wash some dishes,  Take/make them a dinner (and make sure they aren't on a special diet, or if they are, make something that fits it).  Wash a load or two of clothes.  Mow the lawn.  Anything.  It may embarrass them, but it really does help.  

     I got help during chemo from a church and from friends, but by the time surgery came around, the church people were gone and many of the other people who'd been helping weren't able to help any more.  So when I needed it most after surgery, most of the help I was getting was gone.  Now, don't get me wrong; that doesn't mean that the help they had given before was any less helpful or that I blamed my friends for having lives, but maybe if it could have been spread out somehow instead of all at the beginning, it would have been easier for me... if not for them.  I don't like the way that sounds, because I'm not whining; I'm really trying to help the next person that might be affected.  Oh, well.

     Anyway... I hope that helps.

GRP: Thank you Mary-An for sharing your story with us. When the initial flurry of diagnosis is over, a lot of times people don't realize just what a long haul journey beating cancer can be. You have always been a great friend to me. Thank you for allowing me to celebrate your life!

"Hope is a waking dream" ~ Aristotle

I will be having major surgery at the end of this month. As such, I have to have blood work and doctor visits to verify that I am healthy enough to undergo said surgery. On Thursday I went to the lab for my blood draws and I met the most amazing woman. 

Our conversation started as they all do in my case, I share more information than strictly necessary and she shares in equal amounts. My phlebotomist, I will call her J, has had the same procedure I am having and we discuss how necessary it is and how great it will be once it's done. I mention that I do not want to remain in the hospital overnight on 23 hour obs. I will not need much and the thought of being in a hospital where there will be people who will really need their staff, I feel like I am an unnecessary burden that could be avoided.

J then shares with me that she feels very much the same way because while she has terminal brain cancer, she is still able to function fully.

Terminal brain cancer. I had to think about that. She appeared to be a fully functional and productive member of society. J was drawing my blood and holding a conversation with me. She then revealed that she had lived a full year past her original life expectancy and that during her year of very aggressive chemo she only missed 5 days of work. She stated that she could not leave her husband and children, she loved them too much to give in.

I was a nurse on an oncology unit for a year, I watched and worried for my patients as they underwent  treatments. I held them when the pain was too much, shaved their heads when more of their hair was out than in, I watched them take their last breaths and cried with their families after our last good-bye. 

J was all smiles and laughter. She made my day bright and left me with a spring in my step and the echo of the mantra "cancer sucks".  Not every person who discovered they have cancer perseveres with such success and grace. But J showed me that no matter how bad of a hand you are dealt, you get to play the cards the way you want to play them. Mind over matter can work, medical studies show test subjects who receive placebo report improvement too.

Hope is a waking dream, choosing to make your own path and make it successful is a maximized empowerment we are all born with. Find your inner power and use it to the best of your abilities.

Enjoy Maximized Empowerment everyone! And if you would, spare some warm thoughts for all the cancer survivors out there. 

"Know thy self, know thy enemy" ~ Sun Tzu

As I mentioned in a previous post, in order to help combat bullying aimed at my daughter, we are having some "girl time". With Halloween coming up, we did something actually "girlie" we painted our nails. I haven't painted my nails since before Kate was born, so it's been a while, but I realized that she may want to be the kind of girl who does that, so what the heck.

During our mani time, I dropped the words "geek" and "nerd" in some context regarding myself and her response surprised me. Kate said, "I don't like to use those words." So I dug deeper and asked her why.

"People use those words around me and they sound like insults," she replied. "But I don't know what they mean."

I saw the opportunity and took it. "Geeks and nerds are people who tend to like technology, science and math."

She jumped up in her chair and stated, "Well I like those things! I guess I am a geek and a nerd."

"Words are just words, Kate. No one can insult you if you own who you are and how you view yourself. There is nothing wrong with loving math and science and gaming and books. You can be whatever you like. Own what you are sweetheart, and no one can take that away from you."

We had a great time and now she has ladybugs on her fingernails.

Own who you are, don't let anyone else make it ugly or unbecoming. You are the best person you can be. Have a great week and enjoy Maximized Empowerment.

Mirror, Mirror on the Wall

Yesterday while my morning commute I heard this piece on NPR -
http://www.npr.org/blogs/health/2013/10/07/229164585/for-boys-with-eating-disorders-finding-treatment-can-be-hard
I invite you to listen to the piece, it's enlightening and frightening.

Once upon a time, it was thought that women didn't get "men's" diseases, like heart disease or lung cancer. And then women entered the work place and it became acceptable for them to smoke tobacco and suddenly, women were diagnosed with heart disease and lung cancer. Even now medical studies tend to exclude women from test groups because of hormonal differences. Men have hormone cycles too, they just cycle every 24 hours. Research has shown that medications work differently on men and women, so studies have broadened their scope to actually look at those differences so medical professionals can treat accordingly.

Now, the problem of body image crosses the gender gap in the opposite direction. While listening to the piece on the radio all I could think about is how this is so like the small number of men who get breast cancer. How hard it must be for them to have to go through a disease process that no one has really conceived as being a "guy" problem.

Body image issues have been a topic of conversation for many years which provoked mock ups of what Barbie would look like if she were "real", long, dangerously thin women who would not have enough room for all internal organs or able to stand up right; side by side images of celebrities in before and after airbrushing; even actress Keira Knightley was outraged at being given a bigger bosom for ads for movie "King Arthur".

I confess, I did not consider that the ever increasing photos of ripped men might begin to prey upon the minds and bodies of young men. As a women who is not by any stretch the "ideal" female, I have had to come to terms with my own imperfections, which I will not list here, I came to terms with them. I am going to share how I came to terms with them though.

I struggled with my weight throughout school, until one day I hit High School. My activity level went up and my eating went down because I found theater. I was on stage crew, which led to friends that I could hang out with and do things with. I began to lose weight without any true effort on my part because my metabolism cranked into high gear, as most teens' metabolisms do, who hasn't heard about the legendary appetites of growing children?

One evening at a music event, a young man that I had gone to school with earlier and I met up again, after he went to a different high school. He was astonished. At first he wasn't sure I was who he thought I was and then he said to me, "Wow, you lost a ton of weight. You're hot now."

In that crystal moment I realized that I was the very same person he knew a couple of years earlier and treated like crap and now he wanted to be my friend. The only thing that had changed was how I looked to him, on my outside. My inside still found him repulsive because of how he had treated me and I knew he had not changed on the inside either. I thanked him for the compliment and went forward in my life never giving much concern again to what my bathroom scale said.

This is not to say that I am saying anyone should eat until they cannot get out of their homes. My weight has taken it's toll on me physically, leading to medications for hypertension and surgeries for things that might have otherwise been unnecessary if I had not been overweight. But I have never hung my happiness on my waistline, it is what I carry in my heart and share with those I love.

I am sorry to see men fall into the same traps that women have been falling into regarding where they put their self worth. I hope that the broadening epidemic of poor self image is the slap in the face manufacturers, marketers and the population at large needs. We cannot continue to hate ourselves to death.

This week I challenge you to compliment someone every day for something other than how they look. I also challenge you to compliment yourself everyday for something wonderful about you.

Enjoy Maximized Empowerment!