Saturday, December 24, 2011

The Christmas Gift

Have you ever had life kick you in the ass to remind you that your life isn't so bad? That happened to me today. I've been in a terrible funk the last few days because I didn't get a job I really, really wanted. It's been "Merry F***ing Christmas, Life sucks" since I got the news. Then, tonight as we were closing the shop, a customer we have known for the past 7 months, who is battling cancer, stopped in because she was in need and felt she had nowhere else to turn. She was just informed that she has 6 months to live and that this will be her last Christmas. She had no gas, no medicine and no presents for her grandchildren. Community Green opened the entire shop to her and told her to shop for whatever she wanted/needed. This generous woman makes baby blankets for children's hospitals and we had previously donated material to her to assist in her project. Tonight we provided her money for gas and medicine, Christmas gifts & decorations, along with a bag full of material for her blanket project. She said she just wants to spend the time she has left making baby blankets. With a lump in my throat and tears in my eyes, I suddenly felt very ashamed of my whining and bad attitude. I should consider myself extremely fortunate as I have my health as well as good friends and family.

Ironically, the tarot card of the day on Thursday (when I received what I call the "Fuck you very much & by the way you suck" rejection letter) was the World card. The World could be thought of as a time of rest, the time between death and life where the soul awaits reincarnation in the material world and - for the briefest of periods - becomes one with the universe from which it came. All the lessons learned have been put to use. All the tasks accomplished have born fruit and brought prosperity. Every cause has had its effects and all of the diverse threads of effects have been woven into a tapestry of your life as you have lived it. Now is a time to enjoy your wisdom, savour your prosperity and admire the personal artwork you have created, for soon you will start it all over again. The journey may have stopped for the moment, and it may have transcended the plane on which you started, but the journey of the soul never ends.

A new beginning is found in the end, the pieces are in place for a new journey to start, and after that one is completed, another will surely commence. After a glimpse of the Divine you return to manifestation, sure of your convictions and in your ability to someday see the face of God again. The cycle is as endless as the wreath that surrounds the scene, tied together by the ribbons of Divine force, and spiraling around the universe until the end of time. The World card marks a time in your life in which one cycle is over and the next is just beginning. It represents the final achievement of all your worldly expectations and desires, and the imminent approach of new desires to follow and new goals to peruse. The World itself remains the ultimate goal, because it is an affirmation of life and an arrival at a perfect state of harmony and bliss. This is the confirmation of success and the reward for all your trials and ordeals. With the coming of the World comes assured success and material well-being, as well as emotional fulfillment, and growth in the spiritual sense.

In the material world, this card's energy often manifests as a promotion to a higher position or an initiation to a new level of knowledge that was only dreamed of before. But this time of rejoicing and happiness, this peak of ecstasy, merely gives us a glimpse of the next mountain on the horizon. So once again you must step up to the cliff and leap off, ready to start a new Fool's journey and find what secrets lie in this new level of existence. The cycle of the Major Arcana begins where it ends and ends where it begins; start and finish are no longer the ends of straight line, but coincident points on the circumference of a circle that encapsulates your life. The present is now. The future is now. Eternity is now.

I can't help but think it mean the end of my career in domestic violence. If my experience tonight isn't a sign, I don't know what is. Perhaps I am supposed to be focusing all my energy on Community Green?! I have found it extremely difficult to give up that part of me that devoted 25 years toward ending violence against women. It's like giving up a part of myself. But it might just be time to let it go. So Merry Christmas everyone and please take time time this holiday season to cherish the ones you love.

Tuesday, December 13, 2011

18 & 8

I'm a little pensive tonight as today is Hannah's 18th birthday. [Happy Birthday, Hannah!] While I have been preparing for this moment since the day she was born, I'm still not ready. I lost a few years of her growing up after Mike's accident and just as we were getting back on track, the cancer hit. I fear she had to grow up way too fast. Life has taken us on a journey we could not have expected. Luckily she has adapted and faced it head on. She has become a beautiful young woman with a good head on her shoulders. We are extremely proud of her.

And today's tarot card was the Eight of Cups. The lesson the Eight of Cups gives us is this: the past is gone and it cannot be changed, so you might as well make the most of the future. You cannot go backward and you cannot stay where you are, and the time has come for you to move on. This is in many ways a card of self-discovery, urging you to pursue your true path and find something better. An old ambition may have to be abandoned but a new one will certainly arise. Recognizing when it is time to move on, away from difficult times, is the primary theme of the Eight of Cups. So, is this talking about Hannah's growing up or my employment situation? I did have an interview today so we'll soon see what comes of it.

Another type of energy stagnation illustrated here is simple lethargy, the lack of motivation and desire to achieve. Such apathy generally manifests as complaining about how good the past was and how bleak the future looks. I try not to dwell on life before Mike's accident because there is no going back. That life was good and I miss it. Tying into the theme, and usually fitting with the card's symbolism, is the notion that physical sacrifices must be made for spiritual growth to happen. The card show the man walking away from his eight golden cups, neatly stacked, to the barren wasteland ahead. This represents a search for higher truth when the everyday truths of the material world are no longer sufficient to satisfy the soul. In many ways the Eight of Cups is tied to the Hermit and the Hanged Man, who give up their friends and their freedom, respectively, to seek wisdom. The sacrifice intended on the Eight of Cups comes from the heart, but the wisdom earned fills the void that is created. Geez, what more do I need to give up? My marital relationship, my life's work, a car, a house and one breast are gone. I'm not sure there's much left to give. Spiritual enlightenment had better come soon!!!

Monday, December 5, 2011

Just call me Pariah

"I have to say that life has gotten so much better since I have arrived in Santa Cruz. It is truly a magical place, the beaches have healing powers and there is something to be said for eliminating those who bring negative energy into your life. My friend, Tami Tunnell, says negative energy is like a cancer that eats away at your soul and body and as a cancer survivor, I believe her. I suggest - cut them out, get alone with your on thoughts, closer to God and take care of your body, mind and soul. And never forget to honor and support your family and TRUE friends emotionally and spiritually. You never know, you might be the only positive loving voice they encounter in a day. Peace!!!! "
~ Dawn Fridrich

Ok, so I'm thinking about changing my name to Pariah, because that's what I'm feeling like! I was turned down for yet another job today. (It's hell to be unwanted!) And to top it all off, I was told by someone who just met me for the first time today that I needed to get my priorities straight. Excuse me?! I'm fascinated by those who can judge me without having any idea about me or my life. Maybe I should have asked exactly what I should do differently? But I am not willing to hang on to the negative energy. Reading what Dawn posted yesterday on Facebook was just what I needed.

Have you ever had a similar conversation or incident that left you upset for a day or two? How can you release that negative energy? One easy way is to simply brush it off. When people often offer this well intentioned advice, they aren't speaking literally - but here I am. Literally, take one hand and brush your arms, legs, head, and back. Understand that energy literally sits around us so wipe your body clean, like you were removing a layer of dust from your skin. You'll instantly feel better as the cloud of bad energy is brushed from your immediate surroundings. It's best to do this outside and ideally in nature (like on the beach).

Another technique is to shrug it off by shrugging your shoulders, literally. Energy, especially the energy of resentment, which is the feeling that someone has done something wrong to you, often sits in our shoulders - along our gallbladder meridian. By shrugging your shoulders up and down several times, you're helping that energy move and when it moves, it can be removed - instead of sitting stuck inside you. Blowing it off is yet another technique that can help and again, literally. Breathe deeply and exhale quickly and forcefully through your mouth. This will help remove the poor energy from your internal environment.

I think that, short of joining my friend Dawn in sunny Cal-i-forn-ia, my priorities are in order. And while I was offended and discouraged, I do recognize that I am blessed with family and good friends, Community Green and roller derby. Dawn's post was the perfect reminder that no matter what, my friends are there. It's nice to know that someone still loves me!

Wednesday, November 30, 2011

Blue Stars All Around (or Why I Love Roller Derby)

Tonight the 'Paign got together to enjoy some sushi and great company. I made some homemade caramels and white chocolate "blue stars" for everyone. I wanted to bring something homemade from the heart so my teammates and coach know how much they mean to me. It is always so much fun to get together outside of derby because we truly like each other. On the drive home I was thinking about how tight this team and league are and why that is. This is what I came up with:

Playing roller derby is like being part of a cult. At first, it seems innocent enough. I will get in shape! I'll meet new and interesting people! I will wear funny socks! And once roller derby has her little tenterhooks in you, that's when she starts to reel you in. Your family sees you less and less, unless you are trying to sell tickets for an upcoming bout. You work out to get stronger. Your sock drawer will no longer close. For me, roller derby is a way to just be my own person out in the world with an awesome group of women. It's athletic and a fun way to get exercise and move my body. I love that roller derby girls are tough as nails. After all, the game we play involves dashing around an oval track on roller skates, intentionally colliding into opponents and oftentimes sending them careening off the track. Bruises and other injuries are common. Roller derby can certainly be about testing one's stamina, patience, balance, strength, fortitude and overall athletic ability, but it is about so much more, from creating a common bond with others to discovering things about one's self, as well as being involved with the community.

You know your attachment to roller derby has reached the level of "love" when you've given up all forms of normal life: you no longer watch prime-time television, hell, you dumped cable because you don't have time to watch t.v. anymore. You haven't been out with your significant other in months (unless they are also involved in derby) because date night usually occurs on Friday or Saturday night, and you have derby - every weekend. A small corner of your house (or car) smells like a decomposing body, because that's where you air out your gear. You find yourself frequenting bars advertising drink specials because you need your cash to buy new knee pads. And it's why your Facebook friend requests are multiplying faster than a communicable disease.

There is an instant kinship among derby folks. That's not to say all of us are lovey-dovey with each other (although I do love you all), or even that we all get along all the time. There is certainly some "trash-talking" between teams and individual skaters but nothing serious. There is a camaraderie among the derby world, even when we are each others opponents. I suppose derby is unique in this aspect, and much of it stems from the fact that the roller derby resurgence began just as much, or more, as a cultural scene as an athletic one.

And we offer up this support system because we all recognize how unique the roller derby experience is. This is an exclusive club: not one of those douchey clubs where the people inside are wearing sunglasses, talking crap on everyone who walks in that they don't know and only drink imported beer. This club is exclusive because there is a true obsession reverberating through us all: WE LOVE ROLLER DERBY!


Sunday, November 27, 2011


"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather is one of those things that give value to survival."

- C. S. Lewis

The Thanksgiving theme continues. Today's tarot card was again the Nine of Cups, which was appropriate, as I was still feeling quite satisfied and content. It has been a wonderful Thanksgiving holiday. And as you can see, I was again wearing my Elf hat and decorating the Christmas Tree. [And those ornaments are all for sale] Today was a day of reconnection. I ran into a former colleague (from ~12 years ago) and it was great to have a chance to reconnect. Then later this evening, I ran into another former colleague and got to catch up with her, too. Plus, my mother came down for Thanksgiving and spent the last 3 days helping out at Community Green, which was fun.

And as a reminder to leave nothing unsaid, my childhood chum, Debbie, reminded me of an essay I wrote in elementary school. We were asked to write about the person we admired most and I chose Debbie. I gave that essay to Debbie once the teacher returned it. Debbie confided that if she felt down she would read it and it would give her a much needed boost as she got to see herself through someone else's eyes. Now, I don't remember what I wrote but I do remember that Debbie was a good friend and she, along with her grandparents, mom and brothers always treated me like family. They often took me on vacation with them which was the only time I got to go on vacation because my family certainly couldn't afford it. They only asked that I bring souvenir money as they covered the rest. I never forgot their generosity and always did the same whenever we invited one of Hannah's friends along on vacation. I am pleased that I gave her that essay and that she re-read it when she needed it most. I am grateful that she shared that memory with me as it made me feel really, really good. I smiled at the thought of my younger self being so kind hearted. But then again, my friends have always been extremely important to me.

So a great big thanks to Debbie for sharing the memory and much love to all my friends, who help make life worth living!


Saturday, November 26, 2011

The Nine of Cups

If any of you saw my Facebook status earlier today, you know that I was at Community Green, wearing an Elf Hat and playing Christmas Carols on the radio. I think I was even singing at one point! Since I was feeling especially cheery, I thought I'd see what today's tarot card was. As it happens, it was the Nine of Cups. One of the most positive and uplifting cards of the entire deck, the Nine of Cups shows satisfaction on all levels - emotional, physical, sensual. It is little wonder that most Tarot readers refer to this as the Wish Card, and its appearance is often taken as a sign that, whatever your heart's desire is, it shall be granted in the coming days. It may not be granted exactly as you expected but you can rest assured that you will get what you want. The Nine of Cups usually refers to an emotionally fulfilling situation. It shows that joy and happiness are certainly within your grasp, and that you probably already have them. It is a sign to enjoy the abundance of life for as long as it lasts. Feel each of your emotions as if you had never felt any of them before. Take some time to value every person you love - and all those who love you back. See the perfection all around you.

On a more physical level, this card signals delight and pleasure, contentment with what you have and a steady foundation for the future. Your worries are all in the past, and you can look forward to a bright future. The Nine of Cups shows excellent health, though when badly dignified it can often point to an overabundance of physical pleasure that can lead to intoxication and illness. But this is really the only caution of the Nine of Cups: enjoy life and enjoy living but don't take it too far, because pleasure without regard to the consequences is rapidly lost. It is rare that the Nine of Cups refers to a sense of spiritual bliss, since the cards of the spirit are the Swords. But with the Swords suit so full of strife and danger, the Nine of Cups would look out of place anywhere else but in the Cups suit. And if you think about it this makes sense, because when the pleasure and contentment of the physical plane is transferred to the spiritual level, it becomes inner peace and harmony with the Universe. The Universe is, after all, the source of all the love and pleasure that flows through the Nine of Cups into our lives. It only makes sense that we can sometimes follow that river to its source.

The Nine of Cups card further suggests that my power today lies in satisfaction. I have the self-respect, space or esteem that I need to "bartend" my resources or to live large emotionally. I am confident in and gratified by expressing what is close to my heart or in sharing my happiness like a buffet of joy. I take pleasure and pride in the new order I have created by clean sweeping emotional clutter or in honoring what has meaning. I am empowered by recognition and my gift is contentment. It's been a while since I felt content.

Thursday, November 24, 2011


Happy Thanksgiving everyone. It's been a lazy day. I have lounged around in my pj's all day, watching the Arrested Development marathon on IFC and eating too much! And what's this about stores opening up even earlier for Black Friday? A 5am opening isn't good enough anymore? I abhor Black Friday and all its craziness. Luckily, I have to work at Community Green tomorrow. As a matter of fact, that's where I've done most of my Christmas shopping. We get some nice things at the shop!

Thanksgiving is one day set aside for giving thanks, but researchers are finding that a daily dose of gratitude promotes health, happiness and social relationships. Researchers are finding that gratitude is a key element of human well-being. It’s getting increasing attention from psychologists, especially those within the growing movement known as positive psychology, which studies well-being. They are finding that grateful people are optimistic and energetic and deal better with stress and illness. Cultivating an “attitude of gratitude” has been linked to better health, sounder sleep, less anxiety and depression, higher long-term satisfaction with life and kinder behavior toward others. Gratitude, in short, can make you happier. Socially, gratitude builds connections.

One way to "practice" gratitude is to start with "gratitude lite". Keep a journal listing five things for which you felt grateful, like a friend’s generosity, something you learned, a sunset you enjoyed. Just one sentence for each of the five things — and done only once a week. So what am I thankful for? Two years ago at this time, I had just started chemo, having recovered from surgery. Today, I’m truly blessed to be in good health. I’m thankful for all of my family and friends who supported me through these past two years. And I’m so fortunate to have my derby family —my team, league-mates, coaches and refs, who were all there for me during that trying time.

When all else fails, remember the Monty Python mantra of the Black Plague victim: “I’m not dead.” It’s all a matter of perspective.

Monday, November 21, 2011

Breast Cancer Is Not A Pink Ribbon


Scars all over my body
To remind me of my battles

Scars all over my mind
To remember all the trauma

Scars all over my heart
To feel the losses

Scars all over
Healing along the way
But never disappearing.

--Rachel Baumgartner

My esteemed teammate, Polly Nator sent me a link about The SCAR Project. {Thanks so much, Polly.} Feel free to follow the link to be better informed. The SCAR Project is a series of large-scale portraits of young breast cancer survivors shot by fashion photographer David Jay. Primarily an awareness raising campaign, The SCAR Project puts a raw, unflinching face on early onset breast cancer while paying tribute to the courage and spirit of so many brave young women.

Dedicated to the more than 10,000 women under the age of 40 who will be diagnosed this year alone, The SCAR Project is an exercise in awareness, hope, reflection and healing. The mission is three-fold: raise public consciousness of early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens.

Breast cancer is the leading cause of cancer deaths in young women ages 15-40. The SCAR Project participants range from ages 18 to 35, and represent this often overlooked group of young women living with breast cancer. They journey from across America – and the world – to be photographed for The SCAR Project. Nearly 100 so far. The youngest being 18 years old.

Although Jay began shooting The SCAR Project primarily as an awareness raising campaign, he was not prepared for something much more immediate . . . and beautiful: “For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their femininity, their sexuality, identity and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them and the strength to move forward with pride."

I agree with Jay's statement above because my scar is my badge of courage. I have fought that battle and won! My scar is a part of me. I even made reference to it in my poem I Lost/I Found. The gallery of pictures is a powerful reminder of breast cancer's aftermath. It evokes a myriad of feelings within me that is hard to put into words. The pictures intrigue me as true courage and victory shines through. I personally have a long scar but it is rather light (a testament to the fine job my surgeon, Dr. Haynes, did). I also have a "breast mound" [affectionately dubbed "The Boobette"] that remains in case I ever choose reconstruction. My life does not revolve around the scar tissue. My scar is neither repulsive nor pleasing -- it just is.

Sunday, November 20, 2011

Nothing left unsaid

This is a picture I took at Hannah's senior photo shoot. She chose 3 locations: Trevett/Finch park (that awesome tree on the corner of Prospect & University), Kaufmann Lake (where this picture was taken) and the Boneyard Creek basin. She invited me and her Aunt Bert to tag along. {I certainly never invited my mother along, nor would I have even considered it!} I guess it means that as much as I embarrass her, I don't. And it was incredibly important to me to have been a part of it. Amy Scott from RAARS PhotographY was the photographer. I'm looking forward to seeing the proofs as she is an awesome photographer. Amy deserves special thanks for allowing me to "interfere" and do a photo chronicle of her photo session.

I was reading the VOICES column in today's News-Gazette, authored by Tim Sinclair. He describes an anticipated reunion between a father and a long-lost daughter that didn't happen because of a 3-hour flight delay. The daughter's flight landed in Champaign 48 minutes after her father passed away. Tim believes that they will eventually reconnect, in heaven. This story serves as a reminder to make sure nothing is left unsaid. So, if I'm yelling "I love you" across a crowded bar, it doesn't just mean that I had too much to drink, it means I want you to know how much I care. Or if I message you on Facebook to tell you I miss you, it means I need you to know that you are important to me (I don't allow douche bags in my life, so you must be pretty special). If I tag along on your senior photo shoot (I was invited after all), it's because you are the most important person in my life, although you may not always believe that.

I'm having a hard time believing that my baby is about to turn 18 and graduate from high school. Actually, her high school graduation is the first milestone I set for myself when I learned I had breast cancer so it will be bittersweet. I'll be happy to see her graduation day but sad to see her all grown up. I just don't think I'm ready to face the "empty nest" syndrome. And speaking of Hannah, she too, has a blog. Feel free to visit her blog at

Wednesday, November 16, 2011

All the right things

I know that I've spent a great deal of time bitchin' about all the insensitive jerks you have to deal with when diagnosed with cancer. And since my sister always likes to remind me to be grateful for what I do have, I would be remiss if I didn't recognize all of you who said or did the right thing at the right time. While there were many, these stand out most in my mind, but in no particular order:

  • My friend Karen, who, when I complained about all those people saying how brave I was, told me that you never know how strong you are until you have to be. I realized that what others viewed as bravery, I saw as necessity.
  • My colleague, Mike, who said upon learning my diagnosis, "Cancer doesn't know who it's messing with". He made me smile at a time I wanted to cry.
  • My friend, Steve, who was always willing to listen to my crazy ramblings and fears.
  • My friend, Deb, who simply said, "I'm here for you". I never felt so loved.
  • My sister-in-survivorship and leaguemate Coffey Break-Her, who immediately recognized me as a survivor and has been right there with me since day 1 in roller derby.
  • My leaguemate, Ghirley Manson, who told me to "Put on your big girl panties and skate". It was the best piece of advice I have ever been given! [much love to Ghirley]
  • Coach La, who always seemed to know when I needed those words of encouragement.
  • The 'Paign and Coach RAH for always having my back. It's like having my own personal, cancer-fighting army. I love you all and could never have gotten through this without each and every one of you. Go 'Paign!
  • My friend Mary Vita, who, when I had hardly any hair, said, "Let's go to lunch". She didn't care what others thought.
  • My daughter, Hannah, by whom I set those milestones to meet: her high school graduation, her college graduation, her wedding, meeting my future grandchildren...She's always believed that I would survive this battle.
  • My sister, Bert, who said, "Do what you have to do to get better; take all the time you need".
  • My mother, who was always here with me through those trying chemo days.
  • My co-workers at A Woman's Fund, who held down the fort when I couldn't.
  • The most awesomest roller derby league, the Twin City Derby Girls. You never let me wallow in self-pity and certainly never treated me like a cancer patient. You all saved my life by letting me be a part of something so great!

As I started to think about all the wonderful people in my life, I realized that I do have a lot to be grateful for. And if I missed anyone, I apologize, I'm old and suffer from CRS {Can't Remember Shit}. Hugs and kisses to you all.

Tuesday, November 15, 2011

Tell the bitch off

I saw this letter in today's Dear Abby column and was incensed by the response:

Cancer patient is stunned by woman's tasteless joke

Dear Abby:

I have been battling breast cancer and have been blessed to have a lot of support from family, friends and some awesome medical providers. My husband’s best friend and his wife socialize with us quite often, and the friendship is important to him. I recently celebrated a birthday and these friends had us over for a belated birthday dinner. They bought me beautiful flowers and a gift. The card attached made a joke about my “aging breasts,” which she found quite funny.

Abby, I had a mastectomy, which she knew about! To make matters worse, my hair has just started to grow back from the chemo, so I decided to have some highlights put in, and she told me she didn’t like my new hair.

I am hurt and dumbfounded by her insensitive behavior. Unfortunately, this isn’t the first time she has said things like this. How do I tell her I’m offended by her rudeness without compromising my husband’s friendship with them?

Harried Friend

Dear Harried Friend:

You nailed it. The woman is insensitive — but you said she has also made tasteless comments in the past.

For the sake of the friendship between your husbands, tune her out and spend less time with her one-on-one. It’s OK to tell her that her joke about your “aging breasts” hurt your feelings in light of your mastectomy, and that as your hair is growing back you thought you’d like to try something “different.” However, if you use the word “offended” she’ll probably become defensive, so avoid that word.

A final thought: Most people are terrified of cancer. People sometimes try to make jokes about things that make them uncomfortable in an effort to diffuse those feelings. This may be the reason the woman tried to joke about it, so don’t let it cause you to carry a grudge.

My advice

I take issue with Abby's response. My advice: "Tell the bitch off"! I found cancer to be very "freeing" and a good time to "cut loose" all of the insensitive jerks in my life. If your husband is really supportive, he won't mind and might even be relieved to do so. You don't need the aggravation. Save your energy to battle the cancer-your life is far more important than a "pseudo friendship". I agree that most people are terrified of cancer but it doesn't excuse their rudeness. As the old adage goes, "If you can't say anything nice, don't say anything at all". A so called friend/supporter should always take their cues from the survivor. If that is your type of humor, fine, if not, don't joke. A cancer battle is serious stuff. Some use humor as a tool, where others need a stiff dose of love & support at all times. Ditch the crappy friendship!

Thursday, November 10, 2011

Boob Squishing Day

Some of you might have seen my Facebook post earlier today about my mammogram. For the first time in 2 years, it was all clear! [Great big collective cheer here!] Even the spots they saw last year are gone! [Apparently the right boob does not want to become a boobette like the left one]. Perhaps the tamoxifen is working?! Tamoxifen helps prevent the original breast cancer from returning and also helps prevent the development of new cancers in the other breast. Tamoxifen (Nolvadex®) is a drug, taken orally as a tablet, which interferes with the activity of the estrogen. Estrogen can promote the development of cancer in the breast. Since I recently passed my 2 year cancerversary, my odds of recurrence have decreased slightly. Unfortunately, new research published in the Journal of the National Cancer Institute suggests that the risk of breast cancer relapse remains present even 15 years after a woman is initially diagnosed with the disease. {Damn, 2 down - 13 to go!}

And I learned this: Women with dense breasts are more likely to develop breast cancer, and their cancers may be more aggressive, recent research has found. Those who've already had breast cancer are more likely to have a recurrence if they have dense breasts. {I am so screwed}.

We know that being physically active is one of the best things you can do for your health. It helps you maintain a healthy weight and lowers your risk of heart disease, stroke and diabetes. Now, growing scientific evidence shows that it can also help lower your risk of developing or dying from breast cancer. Studies show that physical activity after a breast cancer diagnosis is associated with a lower risk of recurrence and increased chance of survival. Findings from one large study showed that breast cancer survivors who got between nine and 23 MET hours of activity a week (roughly three to nine hours of walking) had a 35 to 40 percent lower risk of recurrence compared to survivors who were less active. The largest study to date on physical activity and survival followed nearly 4,500 breast cancer survivors for more than five years. Survivors who got between three and eight MET hours (roughly one to two hours of brisk walking) of activity a week had a 40 percent lower risk of death compared to less active survivors. Women did not need to do intense exercise to get a survival benefit. Activity equal to a 30-minute brisk walk several times a week improved survival. Women who got more activity got more benefit. So, when I say Roller Derby saved my life, it really did!

Wednesday, November 9, 2011

Luminaria Ceremony

Tonight I had the opportunity to be the survivor speaker at UI's 2012 Relay For Life Kick-Off Luminaria Ceremony. Relay For Life is a fun-filled overnight event designed to celebrate survivorship and raise money for research and programs of your American Cancer Society. During the event, teams of 8-15 people gather the University of Illinois Track and Soccer Stadium and take turns walking or running laps. Each team tries to keep at least one team member on the track at all times. Relay For Life represents the hope that those lost to cancer will never be forgotten, that those who face cancer will be supported, and that one day, cancer will be eliminated. The kick-off was sponsored by UI's Chapter of Colleges Against Cancer (CAC). CAC is a nationwide collaboration of college students, faculty, and staff dedicated to eliminating cancer by working to implement the programs and mission of the American Cancer Society. With hundreds of chapters nationwide, CAC is showing the world that young people care and want to make a difference. I'd like to thank Alma, Christa and all the others for inviting me to speak.

My speech was as follows:

I lost
one breast
most of my hair
mental clarity
all sense of modesty
a few friends along the way
my life's work

I found
gray hair
tremendous respect for my family
true knowledge of who my friends are
new friends
a sisterhood with other survivors
a realization of how resilient I truly am
freedom to be my "true" self
roller derby

Two years, 1 month, 2 weeks and 5 days ago my life changed forever. I remember sitting in the doctor's office as the surgeon said those dreaded words, "You have cancer". I felt like I stepped into the middle of a silent hurricane. There was a roar and a rage that spun my life in a direction I had never anticipated. When you are told you have cancer, it amounts to being given a death sentence. All sorts of crazy thoughts run through your head. Mine were "Will I live long enough to see my daughter graduate High School? Graduate College? Get married? Watch my grandchildren grow up?". Next you realize that you have just set milestones to meet. Then you dive right into the self-pity. When you finally come up for air, you prepare for your recommended treatment. Then you vow to fight the cancer with all you've got and set out on your survivor's journey. And it can be a tough one. Your safety, security and optimism about your life and the future is shaken. The world is revealed as unfair. And with those three little words, I became a breast cancer survivor.

There is much discussion in the breast cancer world as to when you start marking the point at which you went from being an average Jane walking down the street to the "breast cancer survivor." Is it from the point of diagnosis? Is it from the point at which you had you surgery to remove the cancer? Is it when you are done with treatments? A "cancerversary" marks the annual recurrence of the date of a survivor's original diagnosis, although it can also mark any notable event in someone's cancer journey such as the date of the completion of treatment. Though these are all important milestones, for me the process of "surviving" began the minute I was diagnosed. If you are thrown into the pool and tread water for a while you don't count your journey from when you are pulled out of the pool, you mark it from when you were thrown into the water. Some days it seems like it has taken forever to get here and other days it seems like only yesterday.

September 21, 2009 is the day that my life as I knew it ended, and a new life began. Because no matter what the outcome, life is never the same after a cancer diagnosis. My cancerversaries feel rather momentous, partly because my life took such a dramatic change on the day I was diagnosed, but also because of the relief that I have made it through these past two years. I think about my cancerversaries with a combination of pride, dread, sadness, happiness, and relief. Sound schizophrenic? Welcome to the life of a cancer survivor. These past two years have been filled with ups and downs, good days and bad, and a lot of emotions. So what does one do to celebrate a cancerversary? Go out to dinner? Throw a party? Buy yourself something nice? My answer is this: you celebrate that you got to wake up this morning. And that's enough for me to want to pop a bottle of champagne. This may not be the life I ordered but it is the life I’m living. Today, I rarely think of the cancer, choosing instead to live life. While the diagnosis of cancer shattered the illusion that I was immortal, the most surprising side effect of cancer is that it has given me more courage than I ever thought possible. My life after cancer is more courageous, more honest and fuller than my life before. A cancer diagnosis encourages us to know both the fragility and the hopes of life, and with that knowledge to live as fully as possible. And like I always say, time flies when you're having cancer!

They then read this poem for the luminaria lighting:

I light a candle
A brightly shining flame
For all the ones who’ve gone before
Remembering each by name

And I light a candle
For those who live today
Who suffer with uncertainty
Praying one day for a change
And I light a candle

I light a candle for those who are still yet to come
That they will never face the pain when
The battle has been won

And I light a candle
For victories today
For survivors who have fought the fight
We celebrate today
And I light a candle

I light a candle
That every child will have the chance
To ride a bike, learn how to swim
Walk barefoot in the grass

And I light a candle,
That one day we shall light no more and
Offer up this simple prayer,
Praying one day for a cure
And I light a candle

Powerful stuff.

Tuesday, November 8, 2011

Things I wish someone had told me

I’m so sorry you have cancer. You deserve better.
Now that you have been diagnosed, lots of people are going to give you advice and sympathy for the next few days. Most will never understand what you’re going through, but they will try to make you feel better. You’ll hear lots of things like “You'll beat this” and “I’ll be praying for you” and “Never give up!”.
But most people won’t tell you what to expect, because they just don’t know.
I’m here to tell you what the next few days, weeks, months, and years will be like. And I promise not to lie to you.
First things first. You’re about to go through some of the suckiest experiences of your life.
There are not enough words to describe how much this truly sucks.
  • It sucks that this happens.
  • It sucks that it happens to nice people.
  • And it really sucks that it is happening to you.
Life isn’t fair. No honest person has ever told you life was fair. That you got cancer isn’t fair either. But there it is.
And it isn’t anyone’s fault.
Let’s get that part out of the way right now, shall we?
Everyone tries to blame something or someone for cancer. Because it’s really hard to stay mad at something that is growing inside of you. It’s easier to be mad at environmental factors or at yourself for not living “right”.
But it doesn’t really matter what caused or triggered it, does it? Doesn’t change a damn thing and you can’t turn back time and live differently. You can’t go turn off the industrial smokestacks that are bellowing out tons of toxins into our air everyday, and you can’t go back 15 years ago and never eat a cheeseburger either.
Besides, new research seems to indicate that viral infections are the cause. So, remember that really bad flu virus you had that winter? Yeah, that was probably it. Or not. Who knows?
So, get over it, and stop blaming yourself or the world for it. Focus on what’s important right now. The next few weeks and months are the only important things you need to be concerned with.
Here’s what you can expect in the immediate future, so that when it happens, you won’t be shocked.
Stages of Cancer Treatment (From the patient’s perspective)
First is the Education stage. This is the part where everything you could possibly read about cancer will be all you think about. You’re going to try and learn everything you can in hopes of conquering it with your willpower and brains alone.
That’s good. That’s healthy. Knowledge is good. Go for it and get it out of your system.
And then, listen to my first piece of advice…
1. Trust your medical team. They know what they are doing.
Your doctors and nurses have your best interest at heart. They have years of medical experience dealing with this disease, and they want you to get better. They want you to live. If for no other reason, they want you to live because it makes them look good.
So, when they tell you which treatments are advised for your medical condition, do your research if you must. Learn whatever makes you more comfortable with the wisdom of your doctors. Then trust them and do what they think is best for you.
Which brings me to #2:
2. Be patient with the “armchair physicians”
They will attack you in droves now, thrusting out their lotions, potions, and magic drinks that claim to be the “secret cancer cure” no one knows about.
It will be a challenge for you when 100 people approach you with 100 completely different “cures”. They mean well, even though they are being less than helpful.
Try to remember that they believe in their nonsense, and because they believe it, they are trying to be your healer. They think they are going to save your life by telling you all this.
They care about you, but they are dangerous. Thousands upon thousands of people die each year because they fear doctors so much they are willing to forgo actual tested treatments in favor of untested root chewing.
Learn to nod gently and say “Thank you. I’ll look into it”.
3. Be patient with your friends and family when they tell you “let me know if you need anything”, but then disappear completely.
It isn’t easy for them to know what to do for you. They feel helpless. You remind them of their own mortality, and it scares them.
So, understand that if you want help, you have to sacrifice your pride and actually ASK for it. Lean on them whenever possible. Call them and ask them to help you with housework, groceries, dinner, etc. Give them some busy work. It’s good for you and good for them too.
Let yourself rely on your family and friends. You don’t need to be tough all the time. Rest your head on the shoulders of your family who has always loved you, no matter what. They need to be there for you. Let them.
Do it because if worst comes to worst, this is their one chance to make great memories with you. If you die and you didn’t let them help you, they will feel guilty the rest of their lives.
So, don’t be a jerk. Give them stuff to do.
4. You are going to die, but not today
I don’t mean to be morbid here, but you need to remember that just because you have cancer doesn’t mean you know how you’re going to die. You could still get hit by a bus tomorrow or fall in the shower and split your head open on the faucet.
If you remember this, and remind yourself of it often, you will find that you will fear death less and enjoy life more.
Enjoy the moments. Take extra time to do the things you always meant to do “someday”, and do them now. None of us have a clue when our expiration date is, but we behave as if we’re immortal, always procrastinating, always putting off the fun stuff until “later”. Pretend you are dying tonight and do TODAY what you would do if this was your last day on earth. Trust me. Your life will be a lot more interesting!
5. You aren’t helpless to anything.
Although you cannot control what happens TO you, you absolutely can control how you react to it. That is 100% yours. So, do whatever you need to do to kick cancer’s ass. Do your treatments. Take your meds. Take lots of naps. Give your body a chance to fix itself.
Which brings me to #6
6. Laugh.
  • Laugh at yourself.
  • Laugh at the absurdity of the situation.
  • Laugh at bad jokes.
  • Laugh during comedy sitcoms.
  • Laugh at stupid YouTube videos.
  • Laugh as often and as loudly as you can.
It will keep you brave.
Once your treatments are all finished, and you can start growing your hair back, and more importantly, start living your life again, there are some things you need to know.
The next few years will be weird for you.
Every headache will make you think “Oh God, it’s metastasized to my brain!!!” If your back hurts, you won’t be able to stop yourself from worrying that it has moved to your bones. It’s scary as hell, because just when you think it’s over…it isn’t.
Try not to worry too much about it. Get back to your life. Enjoy whatever life you’ve got left. Show up for every doctor’s appointment and do your follow up exams.
But don’t stress too much about whether or not it will be coming back again.
If it does, worry about it then and start the whole treatment process again.
But if it doesn’t, make sure you celebrate each day you have on this earth, ok?
Because from the first moment you were diagnosed with cancer, you felt like you were handed a death sentence. And because you were brave enough to go through all those treatments, you survived it, didn’t you?
That means that every single day you live past your original expiration date is an amazing blessing. You need to enjoy it.
That means you need to LIVE with as much joy and fierce determination to survive as you possibly can.

Tuesday, November 1, 2011

The Moon Card

Today's tarot card is the Moon card. The ordeal of the Moon is that you must travel in the dark, not knowing for sure if your path is the right one. There is no sunlight to guide you, no distant landmark in the hills to direct your steps, no one to travel alongside. This is a journey that must be made alone, in darkness and without a map or a compass. You must learn to rely on your own inner light to lead you along the true path. Any hesitation, any doubt, and that light will be extinguished forever. But if you believe, your light will shine forever, as brightly as the sun that will inevitably rise once this night has passed. The Moon's appearance in a reading almost always means that something is not as it appears to be, and that vigilance and perception will be necessary to find that which is hidden before it is too late. In a generally good reading the Moon shows that not all is as wonderful as you would think. You may be idealizing the situation, and ignoring the fact that potential for failure exists among success. A negative reading that includes the Moon often shows that you are letting your imagination run away with you, and that things are not nearly as bad as they seem. In both cases you must open your eyes and see what it really going on.

This card can also show times when you are not sure of your destination, or even of the path you are traveling - but you travel nonetheless. It's quite possible that you have lost your way, and are stumbling around in the dark. If you wait until the sun rises again the path may have changed and the opportunity could have been lost. So what should you do? The Moon is a card of intuition and psychic forces, so let go of your conscious mental blocks and let your intuition guide you. Not only will the way forward be revealed, but in a lot of cases you will learn lessons about yourself that will be valuable in later journeys.

I'm always amazed at the timeliness of the cards as I have been desperately feeling like I need to find a "real" job, not just my volunteer position. As much as I love Community Green, I fear that it won't become a paying job before my unemployment runs out. Or maybe that's the paranoia that comes along with cancer. I once wrote that I didn't know if my paranoia was caused by the chemo drugs (which mess with your brain) or the cancer itself (because it makes you feel like "less" of a person). There have been more than a few instances where the paranoia has gotten the better of me. I think it has to do with the fact that cancer somehow makes you "less" of a person. It's hard living with the paranoid demons in my head that say, "uh oh, your head hurts, must be a tumor" or "uh oh, your body aches, must be the cancer". Believe it or not, it was sometimes hard to live day-to-day once I was diagnosed with cancer. Although there really is no other way to live once you are diagnosed with a life threatening illness. Whether the outlook for recovery is good or not, the days go by, one at a time, and you must learn to live each one. It wasn't always easy. Each person must work through individual feelings of possible death, fear and isolation in her/his own good time. It is hard to overcome these feelings if they are never confronted head on, but it is an ongoing struggle. One day brings feelings of confidence, the next day despair. Many people find it helps considerably if they strive to return to their normal lives. I tried to do so, but lost my job in the middle of all of it, causing yet another blow to my self-esteem. Battling cancer was hard enough but to then have to give up your life's work? Nevertheless I did learn a lot about myself and my priorities shifted. And I have yet to discover where this journey will take me.

Saturday, October 29, 2011

Ten of Cups & Ten of Swords

Yesterday's tarot card was the Ten of Cups. The Ten of Cups refers to cycles completed, journeys finished and lives well lived in the company of others. Serenity and peace are in the air, and for a moment you can simply forget about all of the material troubles of the world around you. Nothing material matters here, just the eternal happiness that has been earned through trials and obstacles. This success is not a fleeting or temporary one, but a lasting peace and harmony that can truly be enjoyed. There are no regrets over the past, no concerns for the future, so you can live in the moment and seize the day. The only caution of the Ten of Cups is to not squander these precious times that have been given to you. Don't take your happiness for granted or it will only slip away. Don't let this time stagnate, but rather keep it in a constant state of growth and rejuvenation. Don't go looking for problems, just sit back and enjoy what you have.

Then today's card was the Ten of Swords. This card usually symbolizes a sudden and unexpected failure or disaster, a power beyond your control that humbles you without warning or mercy. Karma, the law of cause and effect, has free reign in the Ten of Swords, so a past misdeed may indeed be the source of future trouble. Sometimes you will be able to change this outcome, but most of the time you will simply have to bear down and take the hit. The positive side is that the Ten of Swords is the final ordeal, and no more pain will come to you from that source. It is darkest before the dawn, and as gloomy as it looks, the sun will rise again. This card is the ultimate teacher, and it shows you how to learn from your mistakes and misdeeds so you never have to fall prey to the evil side of the Swords suit again. When this card appears after a painful situation, it is a signal to pick yourself up off the ground and start thinking about what happened to you and what you have to learn from it. Hidden deep beneath the surface of the Ten of Swords is the ultimate power of the Swords suit: the ability to analyze your ways and learn from yourself. True wisdom does not come from without, but from within. The Ten of Swords is a sign that what you have gone through was not without purpose. The great positive power within you can be used to learn from your pain and draw wisdom from defeat. This is the Swords ideal.

I can't help but think this has something to do with my employment situation. I'm very happy at Community Green, but since it isn't providing any income yet, I'm feeling the need to find a paying job. I had a job interview earlier this week, have another one scheduled in November and am hoping for a third one soon. But, I have decided that no matter what, I will not stress over it! If it is meant to be, it will be. If I am supposed to stay at Community Green, I will figure out how to make it pay. If not, one of the jobs will come through and Community Green will take a back seat. Stay tuned to find out what happens...

Saturday, October 22, 2011

The biggest fear

I saw my oncologist the other day for my quarterly checkup. All is well, except that my liver enzymes are elevated. That freaked me out a bit because I damaged my liver 15 years ago by taking too much ibuprofen (unfortunately more isn't always better). But elevated liver enzymes refers to any one of a number of conditions, and does not necessarily indicate any specific disease. It can be caused by any number of things, such as: too much alcohol consumption, diabetes, cancer drugs, high cholesterol and cholesterol medication and overuse of pain relievers (aspirin, Tylenol, Advil, Aleve, etc.) I felt like I was being lectured to about my recent alcohol over-consumption, although Dr. Chaudhry couldn't possibly know about that, could he? Me thinks I am potentially screwed here. But that wasn't so bad in the scheme of things. You see, my mother just found out she has pre-cancerous cells on her face. Like many cancers, skin cancers start as pre-cancerous lesions. These pre-cancerous lesions are changes in skin that are not cancer but could become cancer over time. They discovered it in plenty of time so it can be removed pretty easily. But that news just feeds my biggest fear - being diagnosed with another type of cancer!

I heard so much of that during chemo from my "Chemo Compadres". Beating one form of cancer only to then be diagnosed with another type. That fear is #1 on my list. For patients who thought they had successfully conquered cancer, a second diagnosis of the disease is just as devastating, if not more so, as the first, experts say. It is re-traumatizing. The trauma goes back to the shock and fear of being diagnosed again with a potentially life-threatening illness. When you've gone through a first diagnosis and treatment, time has passed and you gain greater confidence in your health. So when there is a re-experience of that diagnosis, all the same feelings of fear and uncertainty race to the surface even more quickly than before. It's like you thought you had left that in your past and all of a sudden it's part of your future again. There's definitely feelings of anger, which really represents frustration over a sense of losing control in your life, again.

One diagnosis of cancer can be overwhelming, but the effects are compounded psychologically with a second one. One of the common things upon diagnosis with cancer is that you go through a phase of insecurity, instability, not having faith in your body, feeling every little twinge and ache as a possible manifestation of a recurrence. So you're regaining your confidence and you get another diagnosis. Psychologically it's hard, you start to wonder if you're prone to cancer and/or if you'll die of cancer. I have learned that when someone has treatment for a primary tumour, on average there is a 30 to 50 per cent chance of recurrence, across all organs and all tumors. Recurrence is the term doctors use to describe when the primary tumour type has returned in the same or another site. The likelihood that an individual develops multiple tumour types in their lifetime is about 10 per cent. So the chance of that is not high, it's low, but not insignificantly low. But since we are now detecting tumors earlier, it opens the door to more people showing up with another primary tumor elsewhere. It's usually the prevalent cancers: lung, breast, colorectal or prostate.

Now, supposedly, the two diagnoses don’t compound your likelihood of death. They’re independent odds. So it’s a totally new fight starting all over again. The only way they would be related is if the treatment of one tumor limits how much treatment you can do for the second one, but biologically, the odds should be independent of each other. There is not yet a lot of specific information about how likely it is that survivors of specific cancer types will have second cancers. Current research shows that cancer survivors in general have an increased chance of developing cancer compared to people of the same age and gender who have not had cancer. This means that it is even more important for cancer survivors to be aware of the risk factors for second cancers and maintain good follow-up health care. A second cancer can appear at any time during survivorship. Some studies show that a common time for cancers to develop is from five to nine years after completion of treatment. However, because the exact causes of second cancers are not yet known, it is difficult to predict when they might appear. Lifetime monitoring by health care providers who are knowledgeable about survivorship care is recommended--even years after completing treatment for the original cancer.

Monday, October 17, 2011

October is also Domestic Violence Awareness Month

I would be remiss if I didn't mention that October is also domestic violence awareness month. But so far this month, this country has witnessed one of the worst killing sprees – prompted by a domestic dispute – and a legislative maneuver that used domestic violence victims as pawns in a budget negotiation in Topeka, Kansas.

In Seal Beach, Scott Dekraai walked into a hair salon and shot and killed his ex-wife and eight other people. Many reports say he had been violent towards his ex-wife in the past and was in a custody battle over the couple’s son. The Seal Beach community was shocked by the murders and residents wondered how something like that could happen in their neighborhood. Their grief and shock is understandable. Many people still aren’t aware that domestic violence happens in every community; it’s just that most of the time, it occurs behind closed doors. According to the Bureau of Justice Statistics, every year approximately 1,200 women are murdered by an intimate partner – defined as a current or former spouse or boyfriend. That represents more than three women murdered a day.

One in four women and one in thirteen men will experience domestic violence in their lifetime. While these incidents don’t typically involve mass murders and rarely make headlines, it is not uncommon for domestic violence to spill over to the workplace. According to a 2005 survey by the Corporate Alliance to End Partner Violence, 21 percent of full-time employed adults were victims of domestic violence and 64 percent said their work performance was significantly impacted.

We must remember the aim of Domestic Violence Awareness Month is to recognize the achievements made in reducing domestic violence and to recommit to the work still to be done. Yet, I am sitting here trying to understand why Breast Cancer Awareness gets more media attention and corporate sponsorship than Domestic Violence Awareness does? I know that 1 of 8 women will be diagnosed with some form of breast cancer. However, I am having a hard time trying to understand is why it seems to be favored (as if one could favor one personal disaster over another), over domestic violence especially when 1 of 4 women will experience some form of domestic violence in their lifetime meaning women are more likely to be exposed to domestic violence than breast cancer.

I mention this not because I think we should reduce the level of attention Breast Cancer Awareness’ initiatives receive because, after all, I am a breast cancer survivor. I see the interconnections and similarities between both issues and believe they should be addressed simultaneously. Maybe it is easier to be more aware of breast cancer than domestic violence because we often blame women for being domestic violence victims but we rarely blame her for getting breast cancer. Many breast cancer survivors are also abused by people who claim to love them, or who are responsible for their care. I am not just speaking about sexual partners or married couples. Most breast cancer survivors are elderly women who rely on their family (husbands, children or grandchildren) to care for them while they go through treatment. And many of these women, as they fight for their lives against an internal demon, have to deal with being abused as well. Elder abuse, financial abuse, emotional abuse... are all very real ramifications of this disease.

Now, I will be the first to say that dealing with cancer is hard. Very hard. It is stressful beyond belief and it takes its toll on the patient and the people who care for them. But abusing someone because you are incapable of handling and channeling your rage in a productive way... is not the answer. It is never the answer. Additionally, many breast cancer survivors end up losing their jobs for lots of reasons, which often leaves them financially vulnerable and dependent on their spouse or their children to help them manage the costs of treating breast cancer. Add to that the stress of being in a weakened economy along with all the stressors of day to day living...and it often leads to abuse. This is why I believe we should see a pink and purple entwined ribbon, attacking both domestic violence and breast cancer together.

Friday, October 14, 2011

Footprints on my heart

Some people come into our lives and quickly go... Some stay for awhile and leave footprints on our hearts and we are never ever the same. That's from a poem I have always liked, entitled Some People. It is so true. Tonight I spent the evening out with two friends who have definitely left their footprints on my heart. They are some of the best people I know, my friends Deb & Dawn. You see, Dawn is leaving tomorrow for California, embarking on a new phase of her life. She is relocating to sunny San Diego. I am both envious and melancholy. I'm excited for her but will miss her. Deb and I hang together once in a while but we only recently had the opportunity to reconnect with Dawn. I'm so grateful that we did. It seems that no matter how long we've been apart, we just pick up where we left off. We are kindred spirits.One line from the poem says, "They celebrate the true essence of who we are...and have faith in all that we may become." I am a better person for knowing them and having fought the good fight with them (working to end domestic and sexual violence).

Another friend, my awesome 'Paign teammate, Towanda Steel, recently took off for Australia. Although I have only known Towanda, a/k/a Kelly, for about 20 months, she too left her mark on my heart. I had no idea just how much the 'Paign would come to mean to me. Kelly, along with all my 'Paign teammates, was right there with me through the roughest time of my life, my breast cancer fight. What cancer does is force you to focus, to prioritize and realize what's important. Staring death in the face taught me just how much my family and friends mean to me. I prioritized just being with them. Being around the people I love made my fight bearable as I knew that they always had my back, no matter what. At times I wanted to give up but they wouldn't let me. They saved my life.

So I hope that both Dawn and Kelly know how much I love and miss them. I will be keeping them in my thoughts through their travels and new adventures. And Dawn better believe that Deb and I are planning that vacation as San Diego is my happy place!

Thursday, October 13, 2011

Too much pink?

Every year, people spend millions of dollars on items with pink ribbons on them – all because consumers have been led to believe that their purchases will help end the breast cancer epidemic. This is not necessarily the case. Companies know that aligning themselves with “breast cancer awareness” will improve the public’s perception of them and increase their profits. Often, people think, “between a regular product and one that has a pink ribbon on it, I’ll choose the pink ribbon product so at least some of my purchase goes to breast cancer research”. Unfortunately, we often have no idea how much these companies are raising or how it’s being spent.

I saw an article in yesterday's paper re: "pinkwashing", where a company does a breast cancer promotion but sells and profits from the pink-themed product. Has breast cancer become the poster child of corporate cause-related marketing campaigns? My suspicion is that the motive is not always entirely pure. For example, take Yoplait's offer to donate 10¢ to the Komen Foundation for every pink yogurt lid mailed to the company from September through December. Komen would get a bigger donation if consumers simply donated the 44¢ it costs to buy each stamp, not to mention the fact that donors would have to polish off 100 yogurts to come up with a $10 contribution--a formula that surely enriches Yoplait more than the breast-cancer cause.

Komen, which has raised $775 million for breast-cancer research, screening, education and treatment since it was established in 1982, makes a point of transparency about its pink campaigns, as do at least two other large charities: the Avon Foundation Breast Cancer Crusade and the Breast Cancer Research Foundation (BCRF), started by Evelyn Lauder. Komen, for instance, insists that partners in pink-ribbon promotions reveal what percentage of sales will be allocated to the charity and how the money will be spent. They do not, however, require corporate partners to divulge the profits from the products or the amount spent promoting them.

So what happens to the money that does make it to the cause? Is it doing anything worthwhile for women with, or at risk for breast cancer? Activists worry that the sheer ubiquity of pink-ribbon campaigns creates an illusion that all is well in the world of breast-cancer research and treatment. We think that the huge amount of pink ribbon fundraising helps contribute to a sense that the “problem is solved”, though this is clearly not the case. We may have raised awareness, but incidence rates are higher than they were 30 years ago. We don't know how to prevent or cure the disease, and more than 40,000 women still die every year. Donors may feel they have done their bit by buying pink but it's even more vital that we keep pressure on the Federal Government to adequately support the biggest U.S. funder of breast-cancer research--the National Cancer Institute.

So think before you pink or at least read the fine print!

Tuesday, October 11, 2011

Living somewhere in between

Lance Armstrong described cancer as being run off the road by a truck while riding your bicycle. One minute you are pedaling along and the next you are face down in the dirt. Your ride is an epic failure. It's a great analogy. The essential truth is that good, strong people get cancer and they do all the right things to fight it, yet they still die. I don't know why I'm still walking this earth as my prognosis was "not good". I did not actually learn that fact until after I was done with treatment. I never asked and my oncologist didn't reveal that nugget of information. He said that once he met me, he figured that cancer was no match for me so why scare me unnecessarily?! There is something to be said for blissful ignorance.

The uncertainties that cancer can cause do not end with treatment. While the immediate illness may be in remission, you find that your life has changed in unexpected ways. Many cancer survivors find that they feel unsure about many aspects of their lives. This is called living with uncertainty. Some survivors put the cancer experience in the past and choose to hardly ever think about it. The uncertainties that cancer causes do not bother them very much. Others might think about cancer often and find those thoughts to be overwhelming. They may live with a lot of fears about whether the cancer will come back or how cancer will affect the future. I live somewhere in between the two, with only a vague uncertainty.

Today, I rarely think of the cancer, choosing instead to live life. Uncertainty is not part of my daily routine. However, at times, I find that I am overwhelmingly faced with a lot of uncertainty. When looking for a job, I wonder if my cancer diagnosis precedes me. It used to be that cancer walked with me everyday even though I frequently chased him off. Other times I had conversations with death, trying to convince him it was way too soon to take me. I often found myself making deals with the devil, attempting to buy more time. It used to be that the only time I didn't have cancer was when I was asleep. But since I still have to see my oncologist every three months, recurrence does rear its ugly head from time to time. There are dark moments when those fears creep in, almost paralyzing me.

But I find that it is possible to live with a vague feeling of uncertainty about what tomorrow will bring. I think that before cancer, I had fewer doubts and unknowns in my life. Having cancer has made me more aware of uncertainties, because I never expected to get cancer in the first place.

Monday, October 10, 2011

I'm back...and with a guest blogger

Hi everyone! Sorry to be out of the blog-o-sphere so long but my laptop crashed and I just saved enough moola to get it fixed [Big cheer here]. I recently passed my 2 year cancerversary [even bigger cheer]. Part of the reason I have is because of the Young Survival Coalition so I thought it appropriate to celebrate that fact with an article from a guest blogger, my friend, David Haas. A big thanks to David for his insight. A link to his blog appears at the end of the article {just click on his name}. Happy reading!

Cancer Support Groups Celebrate Life Together

Cancer support groups inspire survivors to find healthy ways to cope with their disease. The resources, advice, and personal stories survivors share with each other are both practical and encouraging. One study of breast cancer patients who attended weekly support groups showed significant improvement in survival time. This is just as likely for those with thyroid cancer, mesothelioma, skin malignancies, and other forms of cancer. Even if life expectancy does not improve, quality of life surely does. 

Many cancer patients find it hard to talk about what is happening to them. It may be awkward, uncomfortable, or painful to talk about the disease, even to family and friends. Talking to doctors and nurses can be just as hard. It may seem easier to ignore the issue, but talking can help. While some cancers are curable and most are treatable, almost all survivors face an emotional crisis. Cancer can be the scariest challenge of someone’s life. Talking with others who are going through the same thing reminds survivors that they are not alone.

There is not a “right” or “wrong” to deal with cancer. Each person copes in his or her own way. But talking about it with other survivors, or writing about it in journals or blogs, is therapeutic. Knowing that other people are listening helps survivor’s better cope with the challenges they face.

Some people find it hard to reach out to others, especially if they think they have nothing to give in return. Many cancer survivors are surprised to discover how many people want to support them. Partners, families, and friends can be disappointing sources of support because they are dealing with their own emotions. Most healthcare communities and some churches have support groups, provided by people who simply enjoy helping others. Hospice teams offer support during the last months of life.

 An online group like the American Cancer Society “Cancer Survivors Network” is a valuable resource for cancer survivors. They celebrate life together by supporting each other and telling their stories. Discussion boards are a good place to meet other survivors and build friendships. Internet chat and instant messaging allow for real-time conversations. And cancer support blogs offer useful information and insight.

Cancer patients face similar fears and uncertainties. Support groups are important whether someone has treatable breast cancer, an unfavorable pancreatic cancer prognosis, or a short mesothelioma life expectancy and prognosis. Talking about cancer with people who understand is priceless. Support networks give survivors a sense of belonging and a safe place to vent. Group involvement is known to reduce stress and improve health, for a better quality of life. And that is something every cancer survivor wants and needs. Other online resources can be located at:
Caring Bridge

By: David Haas

Monday, July 11, 2011

Port removal

I recently had my bard port removed as I am done with cancer treatment (yes, a collective cheer is much appreciated). For those who aren't familiar, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". The port is usually inserted in the upper chest, just below the clavicle or collar bone.
A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.
They told me that it usually hurts more when its implanted versus when its removed. I didn't find that to be true. I was in more pain than anticipated (thank god for painkillers!) I was told that mine was starting to fray so it was a good thing it came out. I had debated whether or not to have it removed because, what if (god forbid) I needed it again?! But then I decided to think positive - I will never need it again!
Now the question becomes, due to the aggressiveness of the cancer, should I have the other breast removed? I originally wanted them to take both but surgery is hard on the body. And of course it would have to be done when roller derby season is over!

Saturday, June 18, 2011

A blue star, cancer news & the ten of cups

OK, so I know it's been a while since I last wrote. I've been incredibly busy with Community Green, getting a tattoo with my teammates (that's my blue star on my left wrist), looking for a "real" job, roller derby activities, etc...
On a quiet Thursday evening in May, myself and 5 teammates went for blue star tattoos. You see, in 'Paign-land, a "blue" star is the equivalent of a "gold" star. We award each other blue stars for a job well done. We had decided to go for the tattoos after our first win. I wanted mine to be where I could always see it and be reminded that I am a derby girl. When I'm ancient and tottering around the nursing home (which Hannah likes to remind me that she will be choosing) I will be regaling them all with stories of my roller derby days! Something to look forward to, huh?!
The cancer news is not my news, rather it is a status update on a couple of friends. They recently learned that their cancer has metastasized. Such is the double-edged sword of a breast cancer support group. Those that you've gotten to know and grown to love don't always get better, sometimes there is a downturn. That's why I originally avoided attending a support group. I had lost some "Chemo Comrades" in my year of treatment and was afraid to have that happen again. The pain and heartache of such loss was almost too much for me to handle and it just kept happening. Every time you lose a "comrade" you realize that it can happen to you while knowing that because it happened to them, your odds are better. [This is where that old catholic guilt really kicks in!] Before cancer, I never cried in public (exception: funeral/memorial services). Since cancer, I cried many times in the elevator at Christie Clinic on my way out of treatment. Unfortunately, most people didn't know how to react to the "crazy, almost bald-headed lady" crying in the elevator (oh, to have had a video camera!). But it's always good to be with people who understand exactly what you are going through, so much so that sometimes you don't even have to say it. What I wouldn't give to leave the emotional roller coaster of cancer behind. Actually, these days the cancer is no longer that monkey on my back and I sometimes even "forget" that I have it! It used to be that I only forgot about it when I was sleeping.
What is most interesting is how people deal with such news. Some are galvanized into action to fight for a cure while others retreat to spend time with those most important to them. I am most surprised at my own reaction, as I would have thought that I would've rushed headlong into the fight and devoted all my time and energy to the cause. But I chose to focus on me and mine instead. Sometimes I feel guilty for not doing more in the fight against breast cancer. It has been 21 months since my diagnosis; I have come to the conclusion that the subject still hits too close to home and the uncertainty of recurrence too much to bear.
The lesson I have learned from this journey is reflected in today's tarot card, the Ten of Cups. The Ten of Cups refers to cycles completed, journeys finished and lives well lived in the company of others. Serenity and peace are in the air, and for a moment you can simply forget about all of the material troubles of the world around you. Nothing material matters here, just the eternal happiness that has been earned through trials and obstacles. This success is not a fleeting or temporary one, but a lasting peace and harmony that can truly be enjoyed. There are no regrets over the past, no concerns for the future, so you can live in the moment and seize the day. The only caution of the Ten of Cups is to not squander these precious times that have been given to you. Don't take your happiness for granted because it can slip away. Don't let this time stagnate, rather keep it in a constant state of growth and rejuvenation. Don't go looking for problems, just sit back and enjoy what you have. The greatest power in the world is that of love, and through love we can get a glimpse of what is truly great.

Thursday, May 26, 2011

Still having fun

Last weekend the Twin City Derby Girls held our first bout of the season. My team, the 'Paign beat the McLean County Missfits 159 - 53. And I got to jam! Ok, so I was a bit of a spaz out there but we were so far ahead that I couldn't screw it up. I even managed to score some points! I enjoyed myself more than I can even explain. I played softball for many years and loved it but the rush I get from derby is so much greater. I think it is because of the cancer. All emotions are heightened now. Everything I get to do is a bonus. Fear doesn't stop me; I'll try anything! I "modeled" in the Derby Fashion Show and I continue to play roller derby. I started skating to beat cancer and continue to skate to keep the cancer at bay. The derby part is the bonus. I think the biggest bonus is my derby family. I don't think I could have made this journey without them. They made me strong and keep me grounded.

The resurgence of the extreme sports craze has helped roller derby make a comeback. Personally, I was tired of the "gym routine" and wanted something more exciting. The campy novelty of the sport was too much to ignore. Our derby names, boutfits and attitudes are all in fun. After all, if you can't make fun of yourself, who can you make fun of? Although the workouts are intense, it's still fun. Racing around the rink may look easy but it's not. It takes a lot of strength and stamina just to keep going. But it is the best workout you will find. Roller derby is a lot like life; it will knock you down but you get back up and keep on rollin!

A lot of the 'Paign decided to get tattoos once we scored our first "W". And tonight's the night. I think most of us are going to get blue stars, since blue is our color. I think I'm getting mine on my left wrist. I want to be able to see it at all times so I will always remember that I am a derby girl. Even when I'm 90!

Monday, May 2, 2011

Vitamin D deficiency? What the hell?

I saw my oncologist recently for my usual quarterly check-up. A week later I received a call from his office and they were in a panic. Seems my Vitamin D level was extremely low but I couldn't help but wonder why it was such a big deal? I didn't realize what all problems this could cause. Some health problems that Vitamin D deficiency can cause include heart disease, chronic pain, Fibromyalgia, hypertension, arthritis, depression, inflammatory bowel disease, obesity, PMS, Crohns Disease, cancer, MS and other autoimmune diseases. They wanted me to begin taking a high dose of Vitamin D immediately. Apparently vitamin D is of utmost importance for your body because its role is to help your body use the calcium and phosphorus from your food. It also regulates normal cellular differentiation thus preventing cancer and helps insulin secretion. Vitamin D is very important for the body, regardless of age or sex, but here is something about vitamin D deficiency symptoms in women - it is suggested that vitamin D is very important when it comes to cancer prevention in women; the types of cancers we’re referring to are breast cancer, bladder cancer, ovarian cancer and colon cancer.
One of the most common symptoms of a vitamin D deficiency is fatigue. This doesn’t just mean that you have to take naps throughout the day or that you are sometimes tired and have a hard time waking up in the morning. Instead, vitamin D deficiency fatigue is a near-constant feeling that you might fall asleep or are too weak to do everything from brush your teeth to even walk to bathroom. Folks with vitamin D deficiency fatigue have a hard time not only going to work but also doing such things like driving cars or talking to friends and family members. This symptom is one of the most commonly listed and one of the most debilitating. No matter how much a person sleeps, they may not be able to feel energized. A person’s professional and personal life is affected due to the vitamin D deficiency fatigue. I've been tired and feeling out of sorts lately but I thought it was just overdoing it trying to get Community Green rolling.
Also, pain in the bones or muscles, as well as poor concentration/memory and restless sleep are other indications of possible deficiency. [I have noticed a lot more leg and foot cramps lately and I'm lucky if I remember to get dressed in the morning!] Lastly, a more serious symptom of vitamin D deficiency is that one’s bones have become more fragile. This means that a simple trip could result in fractured or broken leg. This can be quite serious because fragile bones take long time and is hard to heal. [Great, I'd better be careful at derby practice!]
Vitamin D is found in many dietary sources such as fish, eggs, fortified milk, and cod liver oil. The sun also contributes significantly to the daily production of vitamin D, and as little as 10 minutes of exposure is thought to be enough to prevent deficiencies. Getting enough Vitamin D is important to good health!