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    I’ve had a few of those this month, but tomorrow is the one I’ve really been looking forward to. My boy, who has been away all summer at wilderness camp, is coming home. We are going to fetch him tomorrow. We fly to Portland, then travel to Albany, spend the night and get the boy on Friday. I’ve missed my teenager. I’ve really missed him.

    Then, the train home. I absolutely love the train, love it like a crazy train-traveling fool. I’d rather train than cruise, fly or anything else. Watching the world go by, being rocked to sleep as we travel through the mountains, eating in the dining car, I love it all. Tom and I will get to enjoy our boy for a leisurely 16 hours before we’re back into the city life. The poor kid starts high school in two days. I think he’ll probably go crazy for trees. The train will be his pause that refreshes, as well as mine. His sister will see him when he gets home. It is a bit unfortunate that she will be turning 12 on the same day he is done with camp, alas. Oh well, she gets two great parties, not bad for a tween!

    Lately a lot of things to write about are floating around in my head. Many of them have nothing to do with cancer. This site is a resource site first, and I have been floundering around now for nearly a year trying to figure out how to make it one. My sojourn at Camp Medicine Wheel brought some clarity to this vision, and I am actually eager for summer to end and the regular routine to begin so I can seriously get to work. All the same, if it were not for being committed to advocacy and hope, I could really forget about cancer most days. I am beginning to separate it from myself, as I identify more with being a mom, being a massage therapist, being a teacher, artist and writer, being someone who really, really enjoys my life.

    The thing is, for me I can be all that and in the back of my mind and spirit is the awareness that it can change. For so many it does. I don’t dwell on it, but I know it. Even if it were not so, the exhaustion of my days in treatment, the shock of my diagnosis, the monstrous game of chicken that was the battle between the treatments and the cancer, all of that is something that no one should go through alone, ever.

    So, my posts will likely change for now. Sometimes I will forget all about cancer. That’s a relief.
    Sometimes I won’t. There are too many people I care about who are dealing with it. Even if I want to forget about it, it’s in my face.

    But the rest of the site, the part that is not the blog? Never.

    And, I have to think that normalcy in itself is a fabulous message. I know that when I was bald and sick, normalcy was the hope I was holding onto as I pushed through.

    I’ll never take normal for granted again!

    P.S., just posted at Everyday Health about the healing power of the wilderness. I’m so appreciating that today!

     

    Fragile, Handle with Care, NOT!

    What a glorious thing to go backpacking and discover that the post-cancer me is not as fragile and weak as I thought! I guess it’s the fond memories of my childhood that translates into the satisfaction of “being a trooper”, which was my Dad’s way of describing someone who rolls with the punches. Do you remember getting so grubby and scraped up that it took a long shower and lots of scrubbing to determine what was dirt and what was scrapes and bruises? The delicious feeling of a well earned sunburn that brings to mind a satisfying day outside? Maybe I’m nuts, but the feeling of being a little beat up but happy makes me feel sturdy and alive.

    I met my dear friend Susan at her home on Friday, and we were immediately derailed by a late bus (to bring my godson Victor home). Nothing daunted, we drove to fetch him on the way. We were quite delayed then getting to our destination, but we were determined to get up into the mountains that very night, dark or no. Fortunately Susan’s brother Frank, nephew Ben, and another friend (new brother) Paul were already there.

    I had some trepidation about this trip. What if… what if….. what if I overwork my chemo-d heart? What if my arm swells up? What if we get lost? What if my brainfog makes me forget something important? Blah blah blah, off my brain went, but my tendency to blast forward no matter what won out, and I’m so glad.

    When I put the backpack on, I was oh, so discouraged. I was out of breath within the first 10 yards, no kidding. The straps cut into my shoulders. My heart was racing. I needed the trek pole that Susan had provided. We were at 6,500 feet, and I was not ready.

    Nonetheless, I know the only way out is through, so one foot in front of the other with frequent rests ultimately got us there. And was it ever worth it! The trek there was beautiful. It was only 3 miles, not too tough terrain, only a couple of hills, so for all my woes it was manageable.

    We spent Friday and Saturday night there. We had one whole day of nothing at all, just hanging out, visiting, exploring the magic of the place. Susan calls it Camp Medicine Wheel because there is a mountain at the compass points to the West, North and East. We entered camp roughly from the south. We camped next to a river, which lulled us to sleep each night. On Saturday, a thunder storm surrounded us on three sides, while the sky above us remained clear. It was nothing less than heaven.

    I did make a couple of relevant discoveries for cancer survivors who backpack. I was diligent about my “Alaska perfume” (bug spray), but my left arm was covered by a sleeve all of the time so I didn’t spray it. When I went to bed, I took the sleeve off. Alas, forgot to spray! After that, my friends called me Lumpy.

    It was so gratifying to hike back to the trail head with plenty of energy, having become accustomed to the altitude (and having eaten a lot of the food we carried up!), with a chipped tooth, lumpy arm, burns on both hands, lots of sunburn and bruises, and an ear-to-ear grin. No, not fragile. What a relief!

    Sunday ended perfectly, with a stop in Angel’s Camp to look at rocks (there’s an unbelievable store there) and a chance to drum. We actually stumbled upon a weekly open drum circle.

    I wonder if other survivors doubt their resilience after being beat up by cancer and the treatments we have to take to conquer it. Anybody? What about folks still in treatment?

    I know that when I was on chemotherapy it felt good to push myself a little, to walk to my radiation treatments, to do yoga, to find the edge. I had just forgotten. This weekend was a much needed, very therapeutic reminder.

    Planning the next one….

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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…

    I just posted my Everyday Health blog after losing an entire post to cyberspace. AAAAAARGH!

    I did this after taking my 13 year old son Christmas shopping. He hates shopping, but he liked it when I took him to dinner. Things are a bit tight for us, as they are for so many, but “the Bubbee” (their nephew, our grandbaby) is of course going to make out like a bandit.

    Drove up to Mill Valley to see Jean. Always feel plugged in to the Main Source after I see her. 3 hours total. It’s midnight, and I’m still busy, doing stuff, glad I can do it. I guess I’m slowly getting back to my old self again, even though I’m older and creakier. I’ve heard it can take up to three years. This is my third NED Christmas, one of many more I hope and have faith.

    Here’s a sweet picture to tweak your curiosity. I’ll tell you more of the story in another post! For now, let me introduce my wonderful mom and her friend Neville.

    Now, to get my happily pooped self to sleep!
    My son is watching videos of the Annoying Orange. Yes, it is annoying. So glad I’m going to bed.

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    Thanks for visiting! This site is for anyone facing a cancer diagnosis, recovering from cancer, being treated or caring for someone being treated, and anyone else who needs a lift. I am still here, seven years after facing Inflammatory Breast Cancer, and life after cancer is different than it was before. It’s actually better, for me. Even with the inconveniences and remnants of my cancer fight, being here on the planet, making my unique contribution and being with my family, is a blessing I never take for granted.

    So many of us blog while we are in it, and then, after the heroics, we breathe a sigh of relief and get on with our lives.  I have done that too, with a renewed commitment to my work and to my family, but I make sure to stick around here so y’all know I’m real and that I’m still well.  I know that’s so important when you first receive a terrifying diagnosis, to know that others have beat it.

    While it may seem like cancer occupies your whole world right now, you are so much more than cancer.  Being all that you are, and following your life purpose is how you make it through, for a little while or for years.  I have friends who still deal with cancer and are living longer and better than they ever expected.  Others of us remain cancer free as far as we know.

    And what is your life purpose?  According to the Dalai Lama, it is to be happy.

    If you or someone you know has just been diagnosed, please check out my video below. It’s three and a half minutes long, and could make all the difference. By the way, Martin is my 17 year old son.

    This is my little web sanctuary, offering help and hope to the weary I hope, and some encouragement with your practical information.  Nice to see you.

     

    As I read through that old post, I remember the feeling all over again, and wish I could always hold that same reverence and appreciation for my health.

    Painful experiences are soon forgotten, because we’re human, they’re a downer, and we want to get on with life.  The part of my painful experience of cancer treatment that I want to keep is tenderness toward my body, and appreciation of my health every day.

    I had great intentions of never taking my health for granted.  At the time, I couldn’t imagine doing anything else.  I would never fill up on sweets, burn the candle at both ends, forget to take my vitamins or skip eating  my veggies.  I  never intended to let my children know they were in trouble by using their full names either, but that’s another story!

    Guilty on all counts, alas.  Life gets going, ambitions reawaken, perhaps with a greater sense of urgency than they did before, and I forget how good my body has been to me.  My body rode the wild wave of chemotherapy without interruption.  My body has bounced back amazingly well.  I think of this and feel guilty for forgetting to do all the things I couldn’t wait to do.

    I have learned over the course of my tumultuous life that guilt is never a good motivator.  When I beat myself with the big shame stick, I only do more of that which I feel guilty about, because shame makes me weak, not strong.  What works better for me is appreciation.

    As I read through those words I wrote three and a half years ago, the feelings all come flooding back.  The amazement of feeling ok after chemo, the exhilaration of anticipating owning my own body again, the sense of accomplishment that I had made it halfway through and was on the downhill slope.  I remember those two months of watching my breast return slowly, the red hardness receding with each infusion, feeling deep in my bones that I was going to win.  The next four infusions were harder, but I knew that soon I would cross the finish line and begin the next stage of my 2007 Ironwoman triathlon. It was painful to get my breast back and then have to let it go.  I appreciate the one I still have all the more.

    I can get wildly off track and really neglect myself at times.   Then I come to my senses, take the time to feel wonder, sensation, the sensitivity in my fingers and hands that Taxol stole from me for awhile.

    So, the challenge and the reward is to still appreciate what I have while I am busy being and doing.  I don’t want the slow times I had during and after cancer.  Those times of space and reflection were perfect for me then, and the time for that is over.  Now it is time to learn how to move towards what matters, doing what makes me happy, but still appreciating the gift of all the things my body is able to do today, tomorrow, the next day.

    I still haven’t figured out exactly how to do that.  It’s inconsistent at the moment, still learning how to balance reflection with doing.  Maybe I need to put up signs.

    “Elizabeth, have you thanked your body today?  Are you being as good to your body as she deserves?  If not, take this moment, right now, to do something nice for your amazing, healthy body!”

    I am so grateful for my healthy body, and grateful that I still can cruise in the fast lane when it really matters.

    I have always loved Thanksgiving.  It’s a welcome pause to stop and enjoy my family and my many blessings.

    Thanksgiving of 2007 was poignant, and each one after that is a benchmark.  I am another year older, and then there is Thanksgiving!  The focus is the turkey, the festivities, family, or perhaps loneliness and hardship, which good hearted people try especially to ease at this time of year.  What’s great about this whole hoopla is that we are reminded to give thanks, and our churches, workplaces, schools  and communities build gratitude into business as usual.

    What if gratitude IS business as usual?

    My whole perspective on this has changed considerably.  I am grateful that my children are little stinkers and made me so mad I wanted to tear my hair out this morning.  Why?  Because when Thanksgiving came three years ago, I was still weak and sick.

    When I was undergoing extremely aggressive treatments for an extremely aggressive cancer, my little pistol of a boy was exquisitely well behaved.  That was because he was scared out of his mind.  That he is an irascible 13 year old is simply beautiful, and I am so grateful for that!

    When I had my 36th birthday, my baby boy was five months old.  His godmommy had played with him earlier in the evening, and as I rocked him in my rocking chair, singing him a lullaby, he anointed me with all the churned contents of his little tummy.  I laughed, got us both to the bathtub and got us washed off, and reflected on what a gift I had just received for my birthday!  I had miscarried before this beautiful boy had come into the world, and the privilege of little baby barf was just perfect.

    Having faced the very real possibility of not having the privilege of getting old, I am grateful for my wrinkles, my occasional aches and pains, and that I get to be around children a lot.  I am grateful for the smell of rain.  I am grateful that I can write, that I can sing, that I can be taxi service for my 11 year old socialite daughter.

    All of us grumble.  It’s human, and it’s comfortable.  Gratitude has not always come naturally to me, but now it does.  Not a day goes by that I don’t give thanks for my life, and every beautiful thing in it.

    Every day on this earth is a gift.  None of us know when our time is up.  We could be called home at any moment.  The lingering memory of my cancer experience ensures that I am keenly aware of this.  I am grateful for the exalted and the mundane, the frustrating and the outrageous.  Sometimes the joy is so huge I feel that I can’t contain it, nor would I want to.

    I am grateful even for suffering.  I know what I can endure, and I have a glimpse of how much love my heart can hold.

    The Sufi Master Hazrat Inayat Khan said, “God breaks the heart again and again and again until it stays open.”

    Blessings to you and yours this Thanksgiving!

    The day of my cancer immersion (Monday) I was talking with my new friend Norine, and she expressed frustration that she was not feeling better faster. She acknowledged that she felt “a bit blue”. I understand this so well!

    After the heroics, there is the plodding back into life as usual, except that usual is not what it was before. The hordes of supporters get back to thier own lives, and the well-wishers relax a bit, seeing that you’ve successfully weathered the storm. It is not uncommon for the blues to set in, as we adjust to our post cancer lives.

    So why is this up for me right now? Maybe because the process continues to be cyclical. There’s the first bounce back, after treatment is over. Then, settling in to survivorship. After settling into that, I now find myself back into the world of cancer awareness, advocacy, research, other people’s stories, and suddenly the thing I hardly thought about at all is constantly on my mind. Concerning myself with educating people about IBC is bringing me back to how I was snatched from the lion’s mouth myself, thanks to a truly excellent team of doctors who had IBC on thier radar. The last few days I have been grappling with the fear of recurrence, as my brain is steeped in the statistics I so successfully ignored when I was being treated. Suddenly I’m worried about blood tests maybe I should be getting that I’m not. Every little ache and pain takes on huge significance. As I write this, I am remembering my last freak out, which was certainly more warranted, because I was in the riskiest time. Dr. Brown practically had to give me a shake, as she said with a chuckle and some exasperation, “Relax! All your doctors are very happy with your test results!” My pathological report was good, my scans were clear, and I was gripped with terror. IBC is known to bite back, and to do it quickly.

    So why the freak out now, nearly four years later?

    The better my life gets, the more there is to lose. Silly perhaps, but there it is. Many hard knocks in the past have taught me that just when things get good, something bad happens. When I was diagnosed, I decided deep in my bones that this was the last time I was seriously getting hit hard upside the head. This was Persephone’s LAST trip to the underworld dammit, I’m coming out now and staying! At the time I was diagnosed, I was blessed with a very deep faith that all would be well. I didn’t know where that came from. I am convinced that I was simply carried by grace. I told myself that if I got the lesson the teacher would not have to reappear. I don’t know if that was strictly true in the logical sense, but my heart and soul believed it, and I think my body listened. As a result of that decision, my life today is vastly different from what it was. I do things that matter to me. I let my heart direct where I spend my time. I have made the decision not to just leave IBC in the past and forget about it, but to have compassion on those who have yet to be diagnosed, and do my part to see that as many as can be will be diagnosed in time to have a real chance at survival.

    So maybe, because my life is so beautiful to me now, I distrust the changes that I have made, and have backslid into fear. My life used to run on fear. My home was full of fear, my past was full of fear, I was afraid for my children, afraid for me. Fear is an old habit that dies hard. To get well I chose love instead.

    I have to continue to remember what a powerful choice that was. I need to keep choosing it every day, because this day is all any of us have really.

    Today I realized that I had neglected my self care. I knew this because I discovered that I had become out of touch with myself. This discovery came when I took the time to settle in again.

    Self care is not something I do because it is the right thing. I don’t do it because I am terrified of recurrence, which is of course a legitimate fear. I don’t do it because somebody wags a finger at me and says, “please take care of yourself!” It certainly is a challenge to do it. I do forget, lose track, neglect my own needs for something I feel to be more important, like an idea that has run away with me, handling some kind of family upheaval (my children are at each other’s throats again) or omigod so much to peruse on the internet that can’t wait until tomorrow.

    So why? Why is self care so important, if not for the reasons I have just stated?

    Some months ago, some of my survivor friends and I were discussing self care and why it is so hard to do, why we fight against ourselves to do it. All kinds of reasons came up for not doing it. We were all aware that it was vitally important if we wanted to stay well. We decided to do some guided imagery. We entered into our heart space to explore. What came out of that journey is the picture I’ve included in this post.

    For me, self care is love in action. When I care for the temple that houses my spirit, my spirit is happy. When my spirit is happy, I will expand, take risks, be creative, give back. When my heart is open I will find my own treasures there, and share them. When my body is rested, well fed and tranquil, my mind is not so cluttered and I can be patient and focused. In this way I have more to give to others and to myself. In this way everything I give to others is mine also.

    “self care is the key to the treasures of my heart”

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    I was in Sedona for the Christmas of 2008.  I declared myself AWOL because I was there alone, accountable to nobody.

    My children were with their dad for Christmas, my fiance was working a lot, and I knew that by the following Christmas my children would be with me and their new stepfather.  It was one of those sudden, undeniable urges that I’ve learned to listen to.  It was everything I wanted it to be and more!

    I blogged on my caringbridge site, I hiked, I sought out the famous energy vortexes, I gleefully took myself out to a nice dinner on Christmas eve.  I enjoyed my own company, with no one to entertain me but myself.

    The last time I had enjoyed such a long period of solitude was in 1988, when I rode my loaded bicycle down the Pacific Coast alone.  It was an amazing, transformative trip.  Solitude and self determination have a way of peeling away layers, revealing what really nurtures my spirit and what I want the most in my life.  It was the perfect thing to do to settle into the next stage of my healing, when I would no longer be receiving any chemicals at all, when I would try to move forward into my post cancer life with excitement and not fear.

    The first 2-3 years are the most critical after IBC.  What’s good and bad about it is that if it bites again, it tends to do it quickly.  My challenge was to not be distracted by the awareness of this, to have faith that I would continue to get stronger.  My mentor, Jean, said “the trick is to act as if you have control while realizing that you don’t.”.  Not easy certainly, but necessary.

    It has now been nearly four years since I was diagnosed in February of 2007.  I think I need to go AWOL again soon!

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