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    Every year as October approaches, I feel the thrill of autumn and the dread of Pinktober.

    It’s not that I don’t value all the work that goes into raising funds for breast cancer awareness and research.  I won’t bore you with yet another rant on this topic!  Anyone who has checked into this blog periodically knows how irate Pinkwashing and retail opportunism in the name of charity makes me.

    The fact is, I always have mixed feelings during this month.  I am thrilled to be alive, and sad for my sisters who aren’t.  It is annoying and inconvenient to be constantly reminded of breast cancer when most of the time I don’t think about it too much any more.  It is not the center of my world, and that’s how we all want it.  For women who face breast cancer, for a long time we can hardly think of anything else.  For the unfortunate ones who have disease progression instead of successful first treatment, it is always top of mind.  For women who have recurrences it is top of mind.  For those of us fortunate enough to be NED, we can blessedly enjoy a day, a week, or a month without thinking about breast cancer.

    Not so during October.  My daughter put it succinctly.  “Most of the time I don’t have to remember that my mom almost died!”

    If there is anything I can accomplish during this month, it is to gently and persistently tell the true story of breast cancer, so people like my mom who are terrified for loved ones don’t hear “Breast cancer?  Don’t worry, she’ll be fine.  They cure that now.”.  That was pretty tough for her to hear while I battled a disease that statistically was more likely to kill me than not.  It makes for a lonely journey.

    I am relieved that I don’t have to deal with the clerks at my local Safeway when I opt out of the “donate to breast cancer” option as I check out my groceries.  I don’t participate because last year I asked a clerk where that money went, she had no idea.  Neither did the manager.

    I donate year round, to organizations that give money to funding research, so we can have a world where my daughter doesn’t have to be afraid.

    Last week, one of my massage therapy clients was diagnosed with breast cancer.  She is terrified, as we all are when it happens to us.  I suspect that October will be a little extra rough for her in years to come.

    I’m so glad November is around the corner!  My birthday is in a few days.  I’m so glad it is not mixed in with Pinktober!  I can still love autumn when November comes.  I’ll be 52.  Damn pleased to be 52!  When I was 45 I wasn’t sure at all that it would happen.

    As the years pass, I am embracing who I have always been, a wellness professional.  For awhile I almost felt that I couldn’t claim that anymore, because I had faced cancer.  I, who was the picture of health and good habits…how could it be?  I know so much more now.

    Now I know that no one is exempt, no matter how “right” they do everything.  I am true to my profession because I used everything I know to beat it.

    You can check out my new website here.  I will never stop caring about the women who face breast cancer, or the people who face any cancer.  I see it every week when I go to work at the hospital.  I see it in the mirror when I look at my chest.  And, I am committed more than ever to health and healing in the forms I know best.

    Happy November!

    Thanks all who took my survey, thank you thank you!

    I have been noodling over the book, and got bogged down in how long it got. I put that one on the back burner, and what wants to be on the front burner is this one:

    Vitality from the Inside Out: 9 steps to personal congruence

    Why congruence? Because this is what I instinctively did when I received my diagnosis in 2007. I knew that I had to get 100% of me behind staying alive and thriving past my diagnosis. I wanted to raise my children. I knew that only a life that I was really excited about would be worth the fight I had in front of me. So, I set out to heal my whole life. I was seeking congruence.

    This is a word that’s been at the heart of my value system for a long, long time. It feels great to name it and look at the future through that lens. This first e-book will get my toes in the waters of e-book and internet land. Then, I’ll write some more.

    I have a few titles in mind to help my sisters who are entering Planet Cancer, and for their families. I wish I could snap my fingers and write them all at once, and have them ready tomorrow!

    My son made a powerful observation about Maurice Sendak and Dr. Seuss. I commented that both of these children’s authors lived long, productive lives. My boy quipped, “that’s because their lives were full of peace and purpose”. What a kid. Pretty world smart for a boy of nearly 15.

    Peace and purpose is what a congruent life looks like.

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    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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    And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I was diagnosed, I had been a full time professional Massage Therapist for nearly 20 years. I knew all about complementary therapies, but I had been neglecting myself, badly. I wasn’t just a wounded healer. I had been limping for a long time. I had just emerged from an awful divorce, huge work stress (the hospital where I worked was downsizing, and the pressure was on!), and my children were suffering. They were 7 and 9. I knew something had to give, but I didn’t really know how to get out of the quicksand I was in.

    When I got the diagnosis, I knew I had to fight and fight hard. I decided that I had an opportunity to heal my whole life, and that embracing that task would give me the best chance to survive. I sought healing of body, mind and spirit, and most importantly to mend the rifts between them. The word “congruence” was my operative word, and still is. So, my take on complementary therapies is really an approach rather than just a list of modalities. having said that, I pretty much used them all!

    My practices for myself:
    1. Say “yes” when anyone offered help. Accept with gratitude. Believe that I deserved the help and that giving it was a blessing to the ones who offered.
    2. Put myself first, for the first time ever in my life, no matter who it upset. I was fighting for my life, and I knew it. A total stranger told me to do this, and I believed her.
    3. Actively and deliberately sought my own happiness. It took awhile to figure out what that looked like.
    4. Made a decision to stop beating myself up, period. Nothing was gained by my perfectionism, and I was beating myself down. Now I question my tendency to self blame, and if I find something that needs to change, I take note and move on.

    I had to rely on #1 a lot, because I was not in a financial position to pay for everything I received. Still, I accepted it, and it all helped, more than the sum of it’s parts. Here’s my list:

    1. Massage Therapy. I received a massage once a week while I was receiving chemotherapy. My colleagues at the hospital did this for me voluntarily, on their own time. I will always be deeply grateful for this.

    2. Healing Touch. I received this through a Stanford University study called Healing Partners. I received one session per week for six months.

    3. Acupuncture. My mom offered to pay for this because she knew it would help. I was a struggling single mom when I went on this journey so I did not have the funds to do this. I received acupuncture once every two weeks.

    4. Guided Imagery. I believe this had a huge impact on my treatment. I used it to keep my blood cell counts up, to maximize the effectiveness of my treatments, and for healing after the treatments were over. I’ve already written a short article about that on the pages for Complementary Therapies. Excellent Guided Imagery CD’s and MP3 downloads are available from Health Journeys.

    5. Support: I went to an Art and Imagery support group. This was a combination of Guided Imagery and using art therapeutically. It was very helpful. That program closed at the hospital and I really miss it. I also found my Caringbridge site to be a huge source of support.

    6. Counseling. Fortunately for me, this was available through California Cancer Care where I received my treatments.

    7. Laughter! I didn’t do “laughter therapy” (whatever that is…I haven’t tried Laughter Yoga but I have a friend who’s into it and loves it) but at the time I was diagnosed I had been attending a comedy improv class every week, and I made sure to continue. I timed my chemotherapy so I would be up for my class, and I didn’t miss a single one! Even after my surgery, I couldn’t play, but I could watch. I’m convinced that laughing my head off every week was very good for me.

    8. Exercise is very important! I took advantage of the “Living Strong, Living Well” program at my local YMCA and did weights, cardiovascular exercise, and whatever else seemed like fun. I also did yoga at home, and some chi gong. I had a couple of videos and they worked well for me. I have a chi gong video that offers a 10 minute sequence for cleansing, called simply “chi gong for cleansing”. I am convinced that my complete recovery from surgery with my range of motion intact is because I did yoga.

    9. Nutrition: My doctor told me, “Eat what looks good to you”. I wanted to be a martinet about what I ate, but I had decided to accept all help so I indulged in comfort food when it was offered. What I did do is create a smoothie that covered all the bases, and I had that every day during chemotherapy. Now I’m a bit more careful, but not super strict. I find the information on “Food for Breast Cancer” useful and I read the research they publish.

    10. Cultivate hope, actively. I read everything I could get my hands on about recovering. The book “Remarkable Recovery” was my constant companion. I read the stories over and over, especially if I was feeling worn out by it all. The gist of what I got from it was that beating the odds was about doing it how you do it best, and it’s different for all of us.

    11. Self expression and creativity. Everybody has her own way to do this. I found blogging, and loved it. I also got tons of support online, which was a huge help. I picked up a paint brush for the first time in 20 years or so. As I went through radiation, I was also rehearsing for a musical, again for the first time in 20 years. For you it may not be this sort of stuff, it may be something else, but whatever it is, it makes your spirit hum! If you’ve forgotten what that is, it’s time to discover it again!

    12. Prayer. Whenever anyone offered to pray for me, I said yes, by all means please do! Acknowledging that my life was worth praying for, and allowing total strangers to pray for me (I was on a ton of prayer lists) was an important act of self love. There is research that supports the effectiveness of prayer, and I believe deeply that true self love sets all kinds of positive cellular happenings in motion.

    13. Substitute “Feel Everything” for “stay positive”. I heard that stay positive stuff all the time from well meaning people. Being a Pollyanna does not help. Neither does denial. What does help is honoring what you feel, give it expression, and keep things moving. I didn’t elevate my lousy mood by pretending I didn’t have it. I blogged, “feel like crap, going to bed” and then later absorbed the messages of hope from my friends on my guestbook. I cried my way through a few infusions, and then felt better. After I cried I could make art or settle into my warm bed with some hot chocolate. Everything is allowed!

    There’s my first stab at it ladies, for my dear IBC sisters and anyone else this may help. If you have any questions about what’s here so far, or want me to elaborate some more, please send me an email at elizabethdanu@rocketmail.com. What you tell me you want is what will be in Part Two. In the meantime, I am sleuthing out links and resources.

    I hope this helps!

    Love,
    Elizabeth

    I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007.

    The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had it in 1995. She didn’t want me to take her picture or make a fuss. She was not into a fuss thanks, got stuff to do.

    What’s amazing about her story is that she’s alive, and the doctors who treated her botched it one way after another. She was diagnosed Stage IIIC IBC not before, but AFTER 2 botched surgeries where they took the wrong part of the breast! The third surgery yielded the proper diagnosis, MRM, only one breast, not bilateral because “we don’t do that”. Lots of dreadful chemo after (yes, after!) the surgery, which did not include herceptin of course because even though her cancer was Her2+ herceptin did not exist. Then, she did not get radiation either!

    Yikes! And there she is, cool as a cucumber, telling me about it!

    Go figure. Sometimes the best care in the world does not do what we want it to, sometimes the worst in the world doesn’t stop us from conquering. The happy medium is that these days, when women and doctors know more than they have ever before, and patients are full on players in their own story, more and more of us are going to beat it and get on with it, and decide for ourselves whether “making a fuss” is useful or not.

    So much for statistics, prognosis, or any other attempt to predict the outcome of anything!

    I guess what this reinforces for me is that always, always, anything is possible.

    I continue to make a big fuss, to help keep things moving forward in the right direction as much as I can, for all of those who can’t.

    My 15 year IBC survivor friend is quietly doing a whole world of good where she is. She is impacting the next generation, and I’m so glad that she’s still around, doing what she’s doing. She is someone I will run into frequently in my everyday life. Now every time I see her I have another reason to smile, and smile big.

    Like the conscience in old cartoons, My Own Death sits on my shoulder, reminding me to pay attention and treasure my life.

    I was noodling around this evening as I often do, looking for cool juicy stuff on the internet, and my meanderings brought me to an article written by a Palliative Care nurse. She writes about the common regrets she hears from the dying. I was deeply moved by the article, because what happened to me is that I got a second chance, so every regret that she listed was a change I had the opportunity to make in my life.

    Everyone who faces life threatening illness and survives gets a second chance if they choose. I am so grateful that my second chance came while I was still young enough to have more years to enjoy my children, and to follow the passions that I had forgotten on the back burner for so many years.

    The little annoyances and aches and pains that make me afraid are the reminders of my commitment to myself. None of us knows how long we have. Am I doing what I want to be doing, what matters most to me with each day that I have?

    Susan said in her blog, “please don’t pity me. I have work to do”. I am certain that the passion she has for this work of the heart that she does will keep her alive. I feel deeply that my passions keep me well, and feeding them is a smart survival program.

    Today I joined my daughter and my husband for the audition workshop for “The Wiz”, the musical that Bay Area ETC is doing this spring. Part of me thinks I don’t have time, and that I have other important things to do. This article was a timely reminder that doing what I love is the most important thing I can do, and the fact that I get to do it with my sweet family makes it all the more ridiculous not to do it. So, this week I’ll be warming up the pipes, practicing my cackle and hoping the director can see my diabolical side!

    go here to be reminded.

    Well, here she is again fighting the beast.  Damn.

    My friend who I have not met, Susan, has learned that she is facing cancer a fourth time.  She is gearing up for yet another hard fight.  And what was she doing before she found out about this?  Advocating, of course.

    She has worked out a partnership with Lymphediva’s and Crickett’s Answer, a nonprofit in memory of Crickett who died of breast cancer.  For details about this, go to Toddler Planet and read Susan’s last two posts.  I could write about it, but I’d rather sozzle on Susan’s Story.

    Once again our Heroine is facing another Dragon, sent by the Gods to test her strength and her courage.  Each one develops another skill that she will need in order to do the work that her Spirit Guardians have sent her here to do.  She is tested again so that she can give even more hope when she has conquered.  She does not know that they are watching her every moment, and they are pleased and proud.

    Her struggle is catalytic to others who are tempted to do less than they can.

    Her latest diagnosis is an opportunity for God to do a Great Work and prove again that prayer works, and love conquers.

    She is the Great and Powerful Priestess facing the obstacles to the Four Directions, one challenge in each quarter, and this is the last gate to Victory.

    I love making up stories.  Susan’s latest post asks for support, but not pity.  I am not even tempted!  When I was fighting, a friend shared with me that another old friend had made the comment, “well, if anybody can do it, Eddie can!”   Eddie meant me by the way.  It’s along story…

    If anybody has the wherewithal to face this again, she does, and I’m sure it really pisses her off that she is doing it again.  It pisses me off too.  It’s time for her to get a break!

    So, what’s the story?

    What if the meaning in this story is the magnitude of one woman’s impact, and the impact of love on one woman?  Let’s show her.

    Please, think a good thought for my friend, send her prayers, send her love.  She has done so much for so many.

    When I was diagnosed, I made a very specific request to God.  I said,

    “Dear God, if I have ever done anything worthy, if I have ever made a positive contribution to someone’s life, earned any good karma, done a good deed, if there is any positive kickback that I have earned in this universe, please, PLEASE send it NOW!  This is when I need it”.

    I don’t know if I deserved it all, but I got back more than I ever expected.

    I hope Susan’s good karma is rushing now at her in a fantastic wave of grace.

    For more about what she’s been up to, check it out:

    Today was such a good day.

    In the back of my mind, when I was very sick from the treatments that I was banking on to save my life, I had the thought that at least I would better understand the patients I work with after I get well! Maybe I take this silver lining thing just a bit too far, but it works for me. I have heard more than once that people who find meaning in their illness tend to do better in the long run. I have quite a story I made up about mine, and just because I may have made it up doesn’t mean it isn’t true!

    Years ago, I learned a principle from shamans:
    “Effectiveness is a measure of truth”. This is a fancy way of saying it’s true if it works!

    The meaning that I attached to my cancer was that I was going deeper into my own healing journey so that I could be of greater help and service to others. My cancer gave me the opportunity to clarify what is important to me, and my ability to tolerate more suffering than I ever thought I could taught me that I’m stronger than I ever thought I was.

    I learned that expressing my creativity and seeking and making beauty in this world is good for my health, and the love of my friends and family taught me what a difference love and care makes to all of us.

    Today I was blessed to walk into a room where an adolescent girl was moaning in distress, and hyperventilating because she was so scared. I was blessed to walk in there because I understood. After I spent a half hour with her she was calm and breathing normally. Her mother appreciated it so much! Every one of my massage therapist colleagues could have made her feel better. Being the one to do it today was a blessing to me because understanding her fear and her suffering made the experience richer for me. I appreciated perhaps more deeply what an impact I had been able to make.

    I am blathering. How to express the inexpressible? How to give words to the satisfaction of giving comfort after having needed comfort deeply? Now I understand better what my friends received from tending to me, while I feel also that I am deeply in their debt.

    I do remember what a ray of hope it was to have someone speak to me who had been through the same ordeal I was facing. Remembering this, I shared with a fuzzy headed young man recovering from a stem cell transplant that I had faced cancer. He was wildly curious about it. His mother was too. She was especially impressed by the thick knot of hair that I had in a gazillion clips to keep it out of my way.

    I keep my hair long now, and it’s still growing. I do this because every inch is more distance from my diagnosis, and is representative of the length of my survival. It also has meaning attached to it, given by me. I had a vision once, when my dear friend Deborah was doing her healing work with me, of myself strong, sinewy, older, more wrinkled, with long brownish hair streaked with gray. I decided that this was prophetic. I take comfort in this vision as my hair grows. I am going to be an old, strong lady with lots of hair, full of gray ones that I earned. At least I choose to believe this, and act as if.

    As Jean says, acting as if I have control while accepting that I do not.

    One thing I do have control of is the story I embrace as my story, and the meaning I attach to it.

    Today my story is one of blessings and great healing.

    And the day’s end? Painting my daughter’s nails bright pink. Life is grand!

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    Is yoga therapy?

    For me it is. It is good for me in a number of ways. It was good before I got sick, and it is good for me now whenever I take the time to do it. It was especially helpful after I had surgery. My doctor was delighted and amazed at how back I got my range of motion! At this time there is no difference in how I can move my left arm (the one affected by surgery) and the right. There is also very little difference in strength, although I have some lymphedema in the left arm. The lymphedema occurred for the first time when I got distracted and neglected my practice of yoga.

    Here is why it’s good practice:
    1. It is meditation, for folks who are challenged to meditate. The poses require concentration to do properly, and the breathing is very settling. I believe that yoga provides the same benefit for me as sitting for meditation. It is true also that the practice of hatha yoga is said to make the body comfortable for meditation. Either way it is a win/win.

    2. Yoga brings my full awareness into my body. I am more aware of all of me, my spirit inhabiting my body and everything going on it it. I am more likely to take care of issues before they start if I am doing yoga.

    3. Yoga is just plain good for me. It is one more expression of valuing myself. My balance, flexibility, and strength are improved when I do yoga regularly. The benefits are more than the sum of their parts!

    4. When I am doing yoga regularly, I suffer fewer odd aches and pains. When I feel rotten in general I get paranoid and off center, fearful of the beast coming back. This is something that survivors deal with all the time. The fewer odd aches and pains I am subject to, the less anxious I am! I think also that the awareness I have will make me notice sooner if there is really anything amiss.

    5. Yoga, practiced vigorously, is good for your heart. It qualifies for the type of exercise survivors need to decrease the likelihood that our cancer will recur.

    6. Yoga makes me sleep better. It also makes me require less sleep. Now that’s efficient!

    There are yoga centers everywhere, some good some not so good. It’s important to feel confident and at ease with the person you are learning from. There are also a lot of great videos out there. I mostly taught myself and then go to classes every so often to make sure I’m doing it right. I also love the yoga program on my Wiifit!

    For now I’m going to follow my own advice, and sign off so I can do some yoga before I go to bed!

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    The new year is upon us, and I feel that I hardly skipped a beat. Where did all that downtime go? What downtime?

    Kids are back in school, and once again I am trying to decide what to do first each and every day. Always several too many choices. This is the downside of a “composite career”. Or, as Jean says, “a beautiful patchwork quilt”. This is my work and home life, patched together out of the things I find most meaningful.

    I had kind of a down day today, because I am frustrated by the remnants of chemo-brain that still make it hard to juggle the many interests that I do. I like things like this. This is my dream life, really. Some work at the hospital, some theater, some massage therapy, doing my mom thing, blogging, advocating, learning, researching, attending to my own evolution. It’s satisfying, it’s interesting and well….

    It’s complicated! Too many details to keep track of, too many things to forget. My smartphone was stolen recently, and my whole house of cards fell apart! I had hailed my droid as the solution to my organizational woes, and it is, as long as I don’t lose it!

    I got an email from my supervisor at the hospital about some details I didn’t get right, and I felt crushed. I had far more of a reaction than I would consider appropriate for a couple of wrong stickers and a missing form. I think I just had a “poor me” moment. Chemo brain, dammit. Then it was a “you loser” moment, from ‘way, way back. Truly, I know better than that.

    Dropping a ball or two, or forgetting to cross a “t” is only an issue if I do the same ones again. Part of coping with chemo brain is learning how to back things up so I don’t have to rely on my memory. So I guess some new checklists are in order, and a back up system for my smartphone. I resent having to adjust to having “a brain like a sieve” to quote my kids. I used to have a memory that never failed. I used to have a strong left arm too, but oh well. I’m still here, and I guess I get to gripe once in awhile. Griping is cathartic if I don’t make a habit of it.

    whine…….

    Going to take my cranky self to bed now, and pray for my friends who have worse things to complain about.

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