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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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    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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    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

    We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite.

    My last blog on Everyday Health generated comments from two survivors, one of 12 years, and one of five years. The five year survivor had story similar to what I posted yesterday. Still here, backwards treatment and all!

    We need to know you’re out there, survivors!

    Here’s the post over there at Everyday Health.

    I had a great day today. I gave a massage, did theater with some kids, and then went to the childrens hospital. Now my husband and my son are bugging me to get off the computer and go watch “V” with them. Life is good.

    Everybody deserved a life that makes her as happy as mine does me. Let’s make it happen by 2020.

    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.

    Here is the post that started the Army of Lego Princesses

    The Army of Strong, Brave Princess is growing. Go to Toddler Planet and follow the link to Annie’s blog, and believe that this world is full of good people!

    I ran into a friend today, one of my theater buddies. Our two daughters talked and played games on our cell phones while we had a good visit, a hard one too. She is terribly worried about a dear friend of hers, another mother fighting cancer. Felicia shared her ambition to involve her school in a massive fundraising effort for cancer research.

    We had stopped into a store earlier in the afternoon that is run by a breast cancer survivor. She’s got this cute little shop on B street in downtown San Mateo, dedicated to making a difference. You can find out more about her at www.livingpeacefullystore.com. I found out that Barb was a cancer survivor when I asked her about the “Cancer Sucks” bear she had on display. I used to wear a badge on my bucket hat that said the same thing! It made me smile.

    Felly and I got matching little heart necklaces with a peace sign inside. Hers is pink, mine is purple. After we visited the store, we got some frozen yogurt and she told me what she wants to do. She is envisioning car washes, bake sales, maybe a musical theater production, all to raise money for cancer research. I think she was inspired because the lady who runs the store has a son in Felicia’s P.E. class.

    How many of our children have been touched? How many want to do something, and don’t know who the others are in their community that also want to do something? I’m looking forward to seeing what happens.

    It’s a mighty good world, with good folks in it. Yes, there is all kinds of ugliness, violence, want, disease. And, joining together to do something about these things is such a deep satisfaction, such exhilaration, such hope. Today instead of being paranoid about my aches and pains (I have a spot at the front of my right hip that is bothering me, stretching like a nut so I can make it go away and stop worrying) I can focus on what I am able to do, and remind myself to take care of myself so I can keep doing it.

    Susan, what you inspire in others inspires me. The disease you face stinks and what your courage in the face of it draws from people is simply amazing and wonderful. Now that little lego princess is on my desk too, every time I turn on my computer.

    Rock on Princess!

    This is the name of a kid show that my daughter watches. Once again I am up when I it would be better for me to be in bed. I just have this Type A streak that will never reform! I’m not upset about it. I don’t mind being a Type A if it is about something that makes me feel alive and passionate, something important.

    What made me think of “random” is the phenomenon of survivor’s guilt. That’s been a hot topic on one of my discussion groups, and it is something I struggle with sometimes. When I read a story like the one I just wrote about for instance. Some women go through chemotherapy and it is not effective, and they try something else, and nothing works. For some it works well, for some marginally. I have a new friend I’ve never met, and we both posted to another about the fear of recurrence that plagues all of us. Right out of treatment, we all wonder if we’ve really dodged the bullet. The fact is there’s no knowing, and predictors don’t always tell the story. My friend Kelly, whose cancer presented in a much more complicated way and responded to treatment poorly in the beginning, is still here, as am I. We are, as we have discovered, part of the “Class of 2007″. We are discovering that there are a lot of us! Quite a few of us it seems have busted the statistics.

    Now, what about the early stage cancer, the one where treatment went smoothly, margins were clean, plenty of options, and the nasty beast comes back and wreaks havoc? It’s just not fair! When I read about a young mother who lost her battle after a 14 month fight, I stand in amazement and gratitude. I don’t feel guilty most of the time, but I feel unbelievably blessed.

    What cancer does is just so random. It is unpredictable, capricious, unfair. Part of living after and surviving well is learning to live with uncertainty!

    What I know is that since I am still here, it is my gift and privilege to continue to advocate on behalf of those who cannot, and to do my part for those who will be diagnosed.

    It’s not guilt anymore, exactly. It’s a sacred assignment that is mine because I am alive. Since I am alive, and have this assignment, it is imperative that I safeguard my future and present as much as I can.

    Now, to bed, because my body is telling me it wants rest.
    I’m going to be nice to my friend and take her to bed! Follow the link to “My Body, My Friend” at Everyday Health.

    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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    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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