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    Wow, has it really been over a month since I posted?!!! I’m shocked!

    I guess I hit the pause button for awhile. I’m actually full throttle into rebooting my family system. (Really!) I just posted over at Everyday Health about how cancer has affected my family. We are still dealing with it. My son is away at a Wilderness Therapy Camp, and we are engaged in doing everything we can to make sure that the courageous work he is doing up there in the Oregon desert is going to stick.

    So, I’ve been in Mom mode, guiltily ignoring all the goings-on in the cancer world, to focus on my family. There is a lot going on, lots that I have something to say about. I write long posts in snippets in my head. But alas, there is only one of me, so I have to focus on one thing at a time.

    One of my online buddies that I’ve never met has posted about this. I have had it up to my eyeballs with chemo-brain. I am trying to do my Mom thing, do my work, focus on my family, get things done. My family has been deeply affected by Mom fighting for her life in 2007. I am always grateful, every day, that I survived, and am still surviving.

    I’m not the same, and sometimes that really pisses me off.

    This last weekend I made a mistake at one of my jobs. I wasn’t on top of my game. In the past, I was known as someone who was pretty sharp, had it together. I could hold several big pictures in my mind at once, and fish in my brain for the vast databank of details. A boyfriend of mine used to call me “computerbrain” with great respect. No more.

    I lose details. I don’t remember routines that are new. My hands know how to do the things I’ve done for years, but yesterday’s instructions get lost in the muck. I make many more mistakes than I used to. I affirm to myself that I never make the same mistake twice, and mostly that’s true. When I discover that my overloaded hard drive missed something, I create a system externally (like a list, or an alarm on my phone) to make sure I don’t repeat an error. Unfortunately I make errors. Lots of them. This is not like me and I’m struggling with that.

    Other people really don’t get it. If I joke about having a mind like a sieve, I’ve heard, “I never had chemotherapy and my brain is like that too”. (Quitcher bitchin’, you’re just a ditz…)…

    It’s not the same. It’s frustrating. Other people think I’m a flake. One of my colleagues thought it would be great to make an example of me, so I can feel real bad.

    Cancer is the gift that keeps on giving. After you survive it, the treatments you had can give you a new one. Your brain may never recover. Your children grow up before they are supposed to. I feel guilty bitching about it, because I’m alive, which is more than many of my fallen sisters and brothers can say.

    It’s not black and white today, it’s gray. I can rejoice that I live, and mourn what I have lost. It’s gone, never to return, and that’s just the way it is. My left arm will not be strong again, my brain will not be sharp again, although both can work very well under the right circumstances.

    Tuesday evening I will get on a train and go to Albany Oregon, where I will see my son for the first time in three and a half weeks. He has been in the high desert with three therapists and five other boys. He has cooked for himself, made his own shelter, and explored his hurts bravely. I can’t wait to see him. I am so proud of him.

    And while I am feeling guilty for dropping out, I notice that my community is still here, the community of people determined to live well after and in spite of cancer, to help others to do it. I love to see my friend’s comments here. I have a guest post coming, waiting for me to catch up with myself and share another perspective. I’m honored that another cancer warrior wanted to offer her story on these pages. One more inspiring story, coming up!

    None of us are alone. If the rest of my world doesn’t understand chemo brain, at least my cancer warrior sisters do. Yes, they do.

    Onward…

    There’s still time to catch the show if you’re in the Bay Area! This coming weekend is the end. I’ve had a great time, and I’m glad to get my weekends and Monday nights back. All the same, I am going to enjoy every moment on stage and every blissful note I get to sing for the next four performances.

    Tom will be The Wiz one more time, on Saturday. Check out the Bay Area e.T.c. website if you want to see some really fun theater and a lot of really adorable kids!

    Tech week was insane, as it always is. Nine days in a row in the theater with late nights and life as usual. The house becomes a wreck, everybody gets cranky, and we hear songs in our heads in the middle of the night. I used to worry about the stress, the lack of sleep, forgetting my vitamins and my vegetables. Now I have come to the conclusion that having my spirit hum is every bit as good for me as some yoga or a green drink! When I sing, every cell in my body is joyful. That just has to be good for a person!

    So, on with the show, and back to normal on Monday.

    I saw my oncologist a couple of weeks ago and I feel very reassured. No causes for concern whatsoever.

    And the request on the right? I am going to D.C., and I am so stoked! My scholarship covers registration and lodging, but not meals and travel. So far I have received donations to cover half my airline ticket, for which I am so grateful! I didn’t have it to spend, but I spent it anyway because I have to go! My ticket is purchased on faith, and I still have to cover meals and other expenses. If 60 people donate $10.00 I’ll be there. Or, 120 people at $5.00. Thank you from the bottom of my heart to those who already have helped! I will report in depth on what I learn, and you can bet I’m going to use every bit of it.

    Now to organize my bizillion costumes for tomorrow!

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    I guess I’ve been resettling and regrouping. I’ve also been sick, which includes it’s own anxieties. I had a wisdom tooth infection, then a flu/cold bug that lingered, and lingered, and lingered, and now some back pain most likely from doing something stupid, but alas go wheels and cogs.

    I really am looking forward to feeling healthy again. It’s been weeks, and that’s just a bummer for anybody.

    I also took a break from all the “cancer stuff”. Sometimes it’s just so hard. I want to do everything I can to bring hope and positivity to a really rough journey, for whoever has to take it. Unfortunately I haven’t figured out how to do that and not get overwhelmed by the suffering of others. Yes, it overwhelms me. I don’t like it. Who does? Cancer sucks, yes indeed.

    I’m hoping I’ll learn more at the end of April, when I go to the conference in D.C. I’m thrilled that they awarded me a scholarship! Now I really have to go dig in, and figure out how to do that and keep myself sane and happy. This is something I really want to do.

    Recently I read “The Emperor of All Maladies”. I was deeply touched by the story of herceptin, and the obstacles that came up to getting it into mainstream medicine where it could save the lives of people like me. There was a woman, waiting on the edge of life, begging to be given the new drug. Genentech would not release it because all clinical trials had not been completed. The woman died.

    On the day of her death, activists, survivors, and patients drove their vehicles in an outraged demonstration onto the grounds of Genentech, over the lawns, through the parking lots, honking their horns and and waving signs in an uproar of protest.

    More compassionate and timely studies have emerged since then. That woman did not have the power to fight alone. Because of the rest who did, many like me are still here.

    My goal in the next few weeks is to actively and deliberately, with much inward work and outward resources, find a way to be a cancer warrior without having my life identified by cancer. I need to find a way to have days and maybe even weeks that I don’t think about it, because that is healthy survivorship. I need to pick the brains of other women I admire who manage to continue their healthy and happy survivorship and be the rocks that they are for others who suffer.

    So, onward, back to life, back to rehearsals. The Wiz is opening on March 25! It’s going to be a great show. I’m in all of them, since I’m not doublecast, but to see my husband rock as The Wiz, check out the Silver Slippers Cast! Tickets are available at www.bayareaetc.org.

    Hope to see you there!

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    I was tossing around, wondering what was going to happen on February 16. It had been nearly two weeks since I noticed the small, pink rash on my breast. Now the whole breast was red. My left arm ached constantly.

    I knew that tomorrow I would know. I would know if I should be really scared or not. I knew that most probably I would only know that much, and would have to endure several long days (it was the Friday before a three day weekend) before I really knew what I was up against.

    I hoped and prayed that it was nothing, while deep in my gut I knew something was terribly wrong.

    Four years ago tonight there was still a possibility of no odyssey into Planet Cancer. I still hoped, I still dared.

    The next day, I gave a massage on the second floor, walked upstairs to the Women’s Center on the third floor, and nothing would ever be the same again.

    Not the same. But after it all, it’s good. It’s good and it still is, and I am still here. God is good.

    Going to go have a peaceful sleep and give thanks.

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    I have a rash on my chest.

    I think I remember feeling it there after a day of rehearsing, sometime last week. Dancing and sweating, dripping down my chest, noticing little bumps there later and not thinking much about it. It’s been a few days.

    More sweat today, three hours of dancing. Took a bath. Rash looks kind of nasty and itches. Thinking….

    Oh shit. This could be skin metastases.

    I looked up some pictures. I looked closely. Yes, it could be that, but again it might not be. If it is, it’s early. Now that I’m aware of it, it seems itchier and redder.

    My oncologist is away until Tuesday, my mom (my rock) is out of town. I called my husband in to look at the pictures and then look at my rash. He told me it looked like a sweat rash to him but that I should get it checked out right away.

    So, a call to the oncology office tomorrow, and I will see someone else if not Dr. Canales. In the meantime, I’ve put Calendula lotion on it and I’m going to sleep tonight and hope for the best.

    Fear of recurrence is a big deal for us IBC-ers (as we call ourselves I’ve noticed). It’s nearly four years out for me, so I have been holding on to the statistics in my favor, that say that most recurrences of IBC occur between the first 2-3 years. I read on one website that if nothing turns up by five years then it’s probable that we’re cured.

    So, in addition to the yoga I do to minimize aches scaring me, and the neck stretches and acupressure I do to keep headaches from scaring me, if I’m lucky and this is just a sweat rash, I’ll add baby powder to my arsenal of things to keep other things from scaring me!

    This first five years is so hard….

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    Very few of us cancer survivors would be here at all without clinical trials. Every new drug that emerges as a possible weapon in the battle for our bodies is an unknown in the beginning. Before it even gets tried on people, it has to be determined safe. How do we find out the answers? Human beings. Pioneers, risk takers, people for whom the options have become fewer and fewer.

    One of the first women to take herceptin was at death’s door. She was invited to be part of that study but declined, having had enough of treatment misery and thinking she had accepted her fate. She was invited again, after tests confirmed that her cancer was overexpressing the Her2 protein to a very large extent. That woman is still cancer free, alive and well in a small town in Washington State. She braved an unknown chemical, with unknown side effects or outcome, in the hope for another chance to beat cancer. Because of her, and the other women in that study, I and many other women with Her2+ cancer cell types are alive. We are perhaps 25% of breast cancers, and our prognosis used to be grim indeed. Herceptin, and the brave women who were human guinea pigs, changed all that.

    The prognosis for Inflammatory Breast Cancer is statistically still grim. However, today’s statistics don’t include a huge number of us treated in recent years, after major advances have been made in treating our disease, advances that were tested before they were put into practice. My treatment protocol, with herceptin used with adjuvant chemotherapy, was approved for that use only a mere three months before I was diagnosed. I am so grateful that my doc was a trailblazer! She predicted that dose-dense chemotherapy would become standard for aggressive, locally advanced cancers, and I am seeing that come to pass.

    This is on my mind because my friend Susan begins a clinical trial today for a new combination of chemicals, in the hopes of knocking the —- out of this latest, fourth manifestation of cancer, now in her lungs. I can’t imagine the fear and the hope she must be experiencing today.

    I remember my first chemotherapy infusion. I was scared to death. I didn’t know what these chemicals would do to me, or even if they would work. By the fourth infusion I was not afraid, because I knew about Adriamycin and Cytoxan. What they did was nasty, but no surprises.

    The first Taxol infusion was scarier, because of all the disclaimers and warnings I had to sign! When I didn’t turn green or blow up that was a relief. Feeling like I’d been hit by a truck and then flattened by it was nasty, but I knew that it would ease off over time. It also helped that I could see that the mack truck I’d been hit with was knocking down my cancer.

    I also knew that trial and error had evolved these treatments to the point of the least danger for the most benefit. This was available to me because of the brave women who had risked before.

    Today, I am hoping that Susan will find the least suffering for the most benefit. I am praying that this battle will end the war and see her triumphantly resuming her life, tending to her sweet family and doing what she loves.

    And, asking once again for all who can to join the Army of Women! When we know what causes breast cancer, we can reduce the suffering on the other end.

    I just read a story about the youngest breast cancer survivor, a little three year old girl. She is now four, and already and activist!

    Enough is enough!

    We all know we are supposed to exercise. I was doing well until the weather changed and my walking buddy started having trouble with her ankle. Every day I haven’t exercised has made me anxious! I know I’m supposed to be doing it. I have a gazillion excuses…

    It’s yucky outside. I don’t feel like it. I have so much to do, I’ll do it later, no, I’m tired, it’s dark, whine whine. Thanks to my dear ol’ mom, I have no more excuses!

    Seriously, exercise is really, really important. Study after study shows the benefit of exercise, both as prevention and to reduce the risk of recurrence. It’s also good for just about everything else. I’ve been doing a lot of research on the internet lately. Body mass index and survival are inversely related. The higher the BMI, the poorer prognosis statistically. Exercise also impacts insulin resistance, a factor that is becoming recognized as a contributor to the development of cancer. I have a love/hate relationship with exercise, as I’m sure a lot of us do.

    I do great for awhile, and my body, mind and spirit hum. Then something gets me off track, and the all or nothing gal that I am not only drops the ball, I roll it down the hill behind me!

    So, this technological device is worth its weight in gold to my way of thinking. I can choose from a number of clever games that are just that, games! I’m being a kid, throwing snowballs at my family or being chased by a dog on my bicycle, and I’m getting exercise.

    Not only me, but my children as well! My son is very competitive, and the thought of mom doing better than he does is intolerable, so he is now effectively weaned from passive video games in favor of exercise.

    Something else I am noticing, which seems an obvious metaphor. My husband, who is calm to the point of being aggravating to his high-strung wife and step kids, leaves us in the dust when it comes to balance games. Now, this is my focus. Balance! I will be a penguin on an iceberg, cruise down the rapids in a bubble, dodge panda bears and shoes with my head, and any number of silly games to achieve balance first. I feel calmer at the end of the day when I’ve been doing that.

    My journey into this world of advocacy and awareness has been startling, terrifying, and exhilarating. During my entire journey through cancer treatment I really managed to not know what kind of trouble I was in. I didn’t want to see the scary parts, I just wanted to plow on ahead in warrior mode, pass the finish line and be done with it. I blogged all the way through, and then when it was all over I got depressed.

    Then, I got scared. So many of my blogosphere friends dealing with metastatic disease, so many blogs gone because another woman lost her battle. Terrifying and humbling, this. I alternate between terror and survivor’s guilt. Today where I stand is committed and awake, painful as that has been to get to. I have combed the statistics. I have pored through women’s stories. I have faced the impact of my current choices, and improved them. Life is a gift I cannot take for granted, and I need to keep on fighting for those who can’t anymore, and for those who are gone.

    What am I fighting for? Awareness, a cure, and a future without breast cancer.

    And that crazy Wii? Thanks so much Mom. I’m not facing chemicals anymore, I’m creating my future without cancer to the best of my ability, God willing, and you’re still helping.

    I never could do it without you!

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