Monday, May 27, 2013

The Indomitable Diva

Hey, if anyone is reading this, first, thank you. Thank you for remaining anonymous while you chuckle at my insecurities. Second, I'm all over the map. My most recent conquest has put me on the path of getting my black belt in mixed martial arts which includes Tae Kwon Do, Muay Thai Boxing, Kickboxing, Brazilian Jiu Jitsu and Filipino Arnis Escrima. It's a big curriculum but it is so much fun, largely because one of my instructors is this energetic ball of inspiration, who gives unconditionally to teaching his students and thrives off of their personal achievements. His personality is infectious and I am determined to match his energy joule for joule. That, and I like to hit stuff. At any rate, part of my black belt training requires that I keep a journal. I've given up on writing with a pen or pencil because I can type far faster than I can write. Plus, it's more fun for me. So...I've decided to make my blog, my black belt journal. After all, it goes with my theme of falling down and getting back up over and over and over....However, I do not wish to transform the Damaged Diva blog into a personal journal. If you are interested in my daily ramblings, you can find them at The Indomitable Diva . I'm sure there will be all kinds of personal drama there in my quest to manage survivorship with athleticism at the tender age of 46. Otherwise, I will continue to post to the Damaged Diva on ramblings different from my black belt quest.
And speaking of suvivorship, I will try to upkeep my personal webpage, The Cancer Diva, which I have conveniently neglected for six months. No, I'm not dead. Just lazy. I will post cancer updates there for anyone who is interested in that stuff. And speaking of cancer, if you are reading this and you are fighting Cancer, keep fighting. There are amazing experiences on your journey. Be open to them. I hope my story helps somehow. If anything, writing about it helps me, and that's how the whole thing started. Everyday, I am grateful for my awesome life and the people in it. I like to recognize them when I can (without spotlighting them on my facebook page....). Thanks for reading and enjoy the day. Today is the best you will every be.

Friday, May 24, 2013

The Day of the Fact

I wish my memory were better. 40 years of memories are hard to pack in to my tiny little brain especially a brain I soaked in alcohol for much of my young life and later other substances that do not enhance memory (i.e. chemo, diet drinks, and Red Bull). Now I must count on others and their rendition of what went down way back when. I've been walking down memory lane trying to piece together the good old days. So, I dug through the garage and found a bunch of old yearbooks and journals I had written. What I have concluded in this little exercise is I had waaaaayyyy too much fun in my younger years which probably explains the lack of memory of said events. I had multiple groups of friends that fell into categories of Ski Racers (local, national and international), Volleyball Players, Calculus classmates, drinking buddies, boyfriends (with and without carnal knowledge), Drill Team friends,  the Class of 1985, Kayakers, River guides, Colleagues of various jobs, and adopted family members. Admittedly, I used to order my life by boyfriend.  I was a serial monogamist (except when I wasn't which was only once or twice.... and worth it.) starting at the tender age of 11. I could tell which event happened when based on who I was dating at the time. This was a handy little memory tool and worked beautifully for years. Well, until I was around 26 anyway. That particular year, I met my soon to be husband.  Sadly, I have not made 20 years easy on him, but having tested his resolve, I can be completely certain that he must love me. Otherwise, he is a true glutton for rewardless punishment. Needless to say, the last 20 years have been difficult to organize given the lack of dramatic breakups and new infatuations.
Today, we celebrate our  20th anniversary of the "day of the fact." 20 years ago today, my husband and I went kayaking together after deviously being abandoned by a huge group of friends who schemed to get us alone together. It worked. Marek kissed me from his kayak on this day 20 years ago. We call it the "day of the fact" because we have some great memories "before the fact" and "after the fact." I celebrate today because it was the day heaven opened up and welcomed me in. While the day we committed ourselves to each other in marriage is also extremely significant, today has a special meaning. I staunchly refuse to forget how happy I was that day, not simply because I got kissed by a boy, but because I was loved for being me. I got to combine love with kayaking, and have ever since. How lucky am I to have found a life partner who allows me to be me, an unconventional brand of woman who likes to bomb down mountains and rivers and later throw on a dress and heels to dance the night away? He is durable....and patient. The years are starting to run together for me. So many great experiences, so few memory cells. Thank goodness for digital photography and facebook to jog my failing memory. We continue to add memories to the vault. Still a serial monogamist, I have taken it to the next level. Still monogamous after 20 years and grateful it's so easy and fun. Looking forward to more kissing on the river and days of adventure with the kids. One thing I do remember is there's never a dull moment.

Friday, April 26, 2013

Earning my Keep

Home. Park City, Utah is my original home. It is where I began, and the jumping off point of an incredible life. After looking into the abyss last year, I realized that I have not given Park City and the people I associate with it, enough of its due. I went to school and ski raced with some incredible people and many of them I have lost touch with. As my skiing career unfolded, my childhood friends began to fade into the background and only until I was under the ravages of chemotherapy did I realize that I truly missed them. As part of my journey through survivorship, I am taking stock of my life. I have lived an unbelievably incredible life and because it has been a whirlwind of great experiences, it has been some time since I have taken an inventory of the friends I have cherished a long the way. Luckily, social media has allowed me some relief of the guilt trip I started on long ago by allowing me to secretly delve into the lives of my friends from days gone past. Before cancer, I was not inclined to reach out, thinking that doing so may somehow disrupt the natural path of the universe. Everyone is busy chasing their dreams, raising their families or staying ahead of the curve. I was often worried that my attempt to reconnect might be viewed as troublesome or that perhaps I was not worthy of a reconnection, being too fat, too democratic, too non-religious, too self-righteous, etc. I still see people from my past through a young girl's eyes, and when I think of them, I think of them as young, fabulous and full of potential. Meanwhile, I see a 46 year-old mother and wife looking back at me from the mirror and worrying that my young, fabulous friends might not accept me into their young, fabulous lives. HA!
It turns out that they are all in their 40's and 50's too. They have jobs, careers, responsibilities and families. They have lived, loved and lost just as I have and postponing one more second of a chance to share that which has transpired in the last 30 years is merely one missed opportunity after another.
I've been to Park City many times on whirlwind tours involving skiing friends, alumni banquets, girlfriend's birthdays or friend's weddings. For some reason, I have traditionally avoided my high school friends, mostly because I've completely lost touch but also because of my own demons of not realizing the dreams I was so determined to achieve. I lay waste to my own set of relationships in the pursuit of an Olympic podium and when I didn't make it, I crawled into a hole, forsaking many people who were very dear to me. As time passes, it gets harder to reach out due to responsibilities, a few age-related changes, and in my case, a significant amount of guilt, having seemingly abandoned my hometown for my shiny, new, California life.

Cancer has taught me that this is simply crap.

Today, I am the best I am ever going to be because tomorrow is too uncertain and all my body parts have one more day to head south or be removed from my body completely. More than ever, I am genuinely interested in the direction of other people's lives, learning about all of their spouses, children, grandchildren, children's spouses, sports accolades, academic achievements, and their artistic propensities. It's a fascinating snapshot of Park City anthropology and has gripped me in unanticipated ways.

Today, I took a giant leap of faith.

This morning, I met an old friend from High School. 30 years ago, fabulously handsome and dripping with charisma, he was someone I admired. He was a bit of troublemaker from time to time in the interest of fun and playful treachery. However, despite his devilish proclivites, he was driven, focused, and steadfast in his ideals. He carried himself with integrity and held his friends and others around him accountable for their choices even in the tumult of teenagedom. He often flashed a devious smile and used it to melt the hearts of unsuspecting high school girls, of which I was neither in the line of fire, nor unsuspecting. I saw him coming a mile away and I ran for cover. While I had a transient crush on him in middle school, I steered clear of this then-heartbreaking menace out of self-preservation and pursued kinder, gentler relationships closer to my age group.  My friend would make a far better partner in crime and useful ally in my own path of destruction  and unbeknownst to him, I adopted him as a brother as he lay waste to fragile hearts on his own dogged path of goals and aspirations.

My high school friend and I are "friends" on facebook. He has a stunningly, gorgeous wife and many equally stunning, gorgeous children.  Our political and religious views do not harmoniously coincide although I was comforted to know that we found intelligent, common ground. Frankly, I don't care either way because I knew him before he had enough life between his ears to formulate such views. I respect him, and I know he can offer a great argument when I'm in the mood to be somewhat recalcitrant myself. I shared some stories that in his presence, made me a little misty, stories about the ER, ski racing, about my kids, my husband, and my cancer.  He hung with me during my illness with witty FB posts and an occasional, "hang in there." Today, I got to thank him, in person for that very small, yet enormously significant gesture that helped me rally when I was curled up on the floor fighting gravity. I got to hear of his career, his accomplishments, his tragedies, his shortcomings and witnessed the pure joy and love he has for his wife and children. We laughed, we reminisced, and we played a little "one-upmanship."
"My daughter's a phenom."
"My daughter is too."
It was rich and meaningful, and I felt so inspired to be genuinely decent the rest of the day, to be kind and equally inspiring to others, and to be grateful for the gift of friendship, all simply from a leap of faith that required nothing but the courage of a text or an email to plan a meeting. Upon leaving, we exchanged the usual pleasantries of "let's keep in touch," and "let's get together with our families soon."
I asked his advice about looking up someone else from "back in the day," and he gave me a straight, honest answer, despite breaking my heart with it. He is, after all these years, that true friend.

I cried  the entire way as I drove back home, wailing, salt water pouring out of my eyes, partly because I was so happy to have survived the abyss to have this opportunity; partly because I was relieved that another of my childhood friends has found profound happiness in life and appears safe in that happiness; and partly because I felt a deep sadness over the fact that the best way to love someone is to remain non-existent. Last year, my existence was challenged. I was faced with the idea that I would no longer exist to my family, my friends, to Park City or to this Earth, and with chemo and radiation, I ceased to exist socially, having no energy or desire to do anything but survive. The idea of selectively remaining non-existent borders on despair. I always thought there would be time, or that the time that eventually passed would heal all wounds and new and different opportunities for love and friendship would materialize given a little courage. Perhaps I am naive in this view and perhaps some people are just not ready to love universally. Depending on the status quo of another,  waving my own happiness in the face of others might be considered insensitive. I can respect that but either way, it stings a little. Full of life and joy, I just want to call everyone I know as if we were still in High School and say, "I'm here! I survived cancer! I love you or I'm sorry!" (or in certain cases both!)
I need to exist, but not at the expense of another. I'm convinced this wisdom is all that differentiates my 46 year old self from my 17 year old self. Well, that and the 10 extra pounds....
Survivorship is a time of renewal and the extremes of joy and sadness leave no middle-of-the-road emotions. It is an opportunity to dig into that well with valor and reorganize the memories, assumptions and suppositions of a high school girl with the maturity and patience of a woman in her 40's.
It is now that I reach into my soul for serenity, courage, and wisdom.... as the saying goes. Meanwhile, I return to the reason I am here which is to relive some of the joy from my High school years, by donning some trashy 80's clothing and heading to a Bon Jovi concert with my High School BFF. Looking forward to the classic rock station playing Pat Benatar, Quiet Riot, Heart, and if we are really lucky, Greg Kihn Band as we scream the lyrics at the tops of our lungs and revisit drill team bus rides, volleyball games won and lost, and dodged bullets of ex-boyfriends.
Life is short. People are not here forever. Your time is now. Make the most of it.
 

Friday, March 8, 2013

Hope and Promise

Today, was an emotional day. Last Monday, I had a a Bone Marrow aspiration to determine whether or not I would qualify for a study being conducted at UCSF. The study is to test a drug, that is already FDA-approved for another use, to document its effectiveness on preventing the recurrence of breast cancer. Anecdotally, they've seen a reduction in recurrence by as much as 20% but there's no hard data to support it. 20% is significant. I'd take the drug just to take it for those kinds of numbers, and the good news is, it's already deemed safe. 
My Oncologist informed me about the study last November. To determine the effectiveness of the drug being studied, you have to be a slightly higher risk for recurrence. The geniuses at UCSF figured out that there is a population of Breast Cancer survivors that have special cells in their bone marrow that puts them at higher risk. They are not cancer cells. They are best described as "non-bone marrow cells." These non-bone marrow cells could or could not be precursors to cancer cells. The significance of their presence in the bone marrow indicates a higher rate of recurrence although not all women with these cells will relapse. The drug that they are delivering for the study would have an impact on  these cells by strengthening the bone (the drug is given to prevent fractures in patients with weak bones) and reducing a patient's risk. 
I said, "sign me up!" I'll do this study. If I have the potential to reduce my risk of recurrence by 20% with very little risk to my personal health and an opportunity to strengthen my bones, that, my friends, is a no brainer. One of the things I worry about is Osteoporosis. Having been an athlete most of my life,  I have kept my body fat rather low. This produced a state of amenhorrhea (no menstruation) and put me at risk for Osteoporosis, and the chemotherapy and radiation therapy did not help. Weight lifting has helped to strengthen my bones but as I get older, bone-loading will be harder to sustain. While I plan to continue utilizing weight lifting in my training until I'm well into my 80's, the toll of overuse may play a part in my ability to continue on that plan. I've already replaced one joint, and my knees are not far behind. 
Back to the study.....So, the caveat to qualifying is that I have to have these "non-bone marrow" cells present in my bone marrow, and the only way to determine that is to have a bone marrow aspiration. This is not a comfortable procedure. They drive a skewer into your pelvic bone and suck out the middle. It's not pleasant and I've seen it done in my job as a nurse. People don't like it. It's painful and awful. But 20% is too compelling and worth a little pain. I had the procedure done. The physician, Dr. Li, did a fantastic job. She numbed me up with  prolific use of lidocaine, or marcaine, or bupivicaine or some caine that made me not care about the skewer. The hard part was the bone-marrow sucking part. You can't really do anything about this and having your bone marrow sucked out is painful. It only takes a couple of seconds and Dr. Li warned me well. Still, when she sucked out my bone marrow, I thought my head would cave in. Yeow. If I were to qualify for the study, I would have to have two more of these to measure the effectiveness of the drug. Not fun. But neither is chemo and anything that keeps me out of an infusion chair by a margin of 20% is worth a little bone-marrow sucking.
All of this was done last week. It takes a few days to run the assay and they are sucking a lot of bone marrow to find candidates for their study. I waited as patiently as I could. Here's the skinny: If I qualify, I get the drug. If I don't qualify, I still get a drug to prevent osteoporosis that reduces breast cancer risk by 10%, and by not qualifying, it means that I have relatively healthy bone marrow and a lower risk of breast cancer recurrence. Being a Stage III survivor, it's always in the back of my mind that there are cells in my body swimming around just waiting for an opportunity to build a tumor somewhere. My biggest fear was that they were in my bone marrow, a common place for metastasis or the spread of cancer from another area. This will always be in my mind which is why my current lifestyle is geared around beefing up my immunity to decimate such cellular uprisings. I have quit (cold turkey BTW) coffee and caffeine, aspartame or artificial sweeteners of any kind, and alcohol. Still working on the sugar. That's a tough one, but the reduction in my consumption of sugar is hopefully a step in the right direction. 
Today I got a call from my doctor. 
"Hello?"
"Yes, this is Dr. M from UCSF, is this Tori?" (he knows it is, but he has to verify due to HIPPA, the bane of all healthcare workers' existence....)
"Yes, this is Tori."
"Hi Tori, I have the results of your bone marrow aspiration. "
<compensatory pause>
You don't qualify."
<another compensatory pause, presumably awaiting reaction>
Silence.
"It's a good thing," he adds. 

As an athlete, anytime I've been told that I didn't qualify, it was usually a devastating blow because it meant I didn't get to advance or go to the next big race or make a team. It's almost Pavlovian to be disappointed to hear those words and I was at first. I don't qualify. Darn. Wait a minute.....
Tears of joy flooded out of my eyes. I don't qualify. I don't have the cells in my bone marrow, cancer or non-bone marrow, that predispose me to recurrence. For once, I am catching a break and I find myself so overwhelmed with emotion, I can hardly speak. 
These are the days I live for. It's like someone granted me all the wishes I made when I was sick. I remember pleading, wishing on the first star I saw every night for a year, please let me watch my daughters graduate High School. Please let me watch them grow and change into the amazing women I know they will become. Please let me watch my husband thrive and excel in his new job. Please don't take me away from these people that I love so very much. I will quit my job, I will be nicer to people, I'll help others, I'll cook more, I'll do anything. Please, just let me have a few more years with the incredible people in my life and an opportunity to reach out to all those I have lost touch with. I will do my very best to earn that privilege.
Today, that wish was granted, at least for now, and I intend to keep my promise to earn it. From tears of joy spring hope and pure, unadulterated happiness. I am elated to share this news and keep my promises. 


Friday, February 15, 2013

Welcome back Mojo

Did that just happen?
I was worried about who I might be after all this cancer fighting and hip replacing. I thought, I'd probably be some version of my parents and muted, a fate I was not particularly excited about. However, in recent weeks, I have experienced an upsurge of life. Energy levels have not only returned to normal but they are better than they have been in 8 years. I feel extreme amounts of joy and want to write everything in CAPITAL LETTERS because I am so darn excited to have myself back! For the first time since my children were born, I actually have as much, and perhaps more, energy than they do which has proven to be a little bit troublesome because they have 8 and 10 year-old bodies while I have a 46 year-old body. It's nice that I have forgotten this very important fact but unfortunately, the muscle aches and joint pain associated with trying to do 18 year-old activities with a 46 year-old body are a little more prevalent these days and brought forth new and profound limitations.
I may have mentioned before that up to  now, I haven't really gotten that "eye of the tiger" feeling where I feel like going out and pushing through my lack of fitness or muscles that have bathed in chemotherapy agents for the previous year. Well, now I have that "eye of the tiger" feeling, so I'm out running and jumping and dancing and doing situps and going to kickboxing class and martial arts class! I'm just so DARN EXCITED that every other day, I reverse the entire success of my feeling good by making myself so darn sore from all the activity that I end up giving up an entire day just to rest. Whew! It's a good thing my athletic-training friend (and former Olympian), Eva Twardokens does not live near me or she would bitch-slap me just about every other day. I'm like a new puppy. You gotta rub my nose in it a few times before I get it, and if I get distracted (SQUIRREL!), we are starting all over.
Everyday I jump out of bed, excited, energized, completely infatuated with my life and the people in it. In fact, I think I have scared one or two of them with my newfound love and zest for living. (Who is this woman we haven't seen in X years?) I've lost 15lbs, my heart rate is back to it's usual 50's and I am MOTIVATED. The difference is like night and day and the relief that I am back is intoxicating.
The best part is my sex drive is back. This old friend has been gone for quite some time and on the heels of menopause, I thought was gone for good. I was bracing for a boring and conjugal sexual relationship with my husband for the rest of my life, which sadly was not the way our relationship began. I was clearly NOT the girl he married and this was really sad for both of us. Then, one recent glorious morning, I woke up and went "ROWRRR." (Note the all capitals!!!!) This is probably the most significant sign that I am healthy although my poor husband doesn't know what hit him... Remember those people that I have scared? My husband is NOT one of them and he is making up for lost time. And after a year of hip surgery and breast cancer and all he has done to keep our family on the map....he's excited to see the girl he married reappear in his bedroom.
The worry of what my life will be like after all this is fading. Suddenly, it's not hard to make that kale smoothie or avoid that chocolate-covered Acai berry (my new weakness) because I feel good without it. My diet is easy to follow. My exercise regimen is fun and I've taken up kickboxing which allows me to kick and punch stuff. I cannot put into words the exhilaration of being able to fly at a bag and beat the crap out of it with vigor. The resulting tension release is extremely satisfying and I am working out at least a couple years' worth. You can imagine that I feel just a wee bit lighter. Again, my husband is happy to not play this part (punching bag) anymore, which is good for both of us.
The experience of survivorship has metamorphosed once again. What is interesting is today marks the one year anniversary of my last chemotherapy. It has taken exactly a year to process all the poison, the radiation, the adjuvant therapy, the new medication and perhaps the psychology of my circumstance. It's okay to live and survive and appreciate the path that got me here. I now have the energy and desire to reach out and kiss every single person who got me to this moment. So if you see me coming, get ready......the tiger is back.