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    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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    I thought I was done for this year, but no!

    I was inspired by a post by the woman who has influenced me profoundly in the brief time I’ve been reading her blog. She wrote a letter of thanks to Lymphediva’s, for making it cool to wear a compression sleeve. I concur, I love my lymphediva sleeves! I am convinced that having a fashion statement to wear on my arm actually means that I wear it, and so my lymphedema is very well controlled. I appreciated that she took the time to express what a difference this product has made in her life.

    So, how to express my appreciation to someone I’ve never met? All the same, we share a common trial and purpose, and she has shown me the way with grace and dedication.

    *****

    Susan,

    Your story and your commitment are an inspiration to me. What inspires me even more than these is how deeply you live these commitments, choices that you make for the betterment of our world. Your dedication to your children at all times reminds me to appreciate mine, the time I had with them before cancer, and every precious moment I have with them now. Your desire to be an advocate goes further than just your own words, you have engaged others to carry your experience further that other lives can be saved.

    I ask people about IBC and the majority know nothing about it. You are one woman sending ripples ever outward, inspiring, sharing, pushing, encouraging, struggling. All of your work, impassioned as it is, will not be enough to bring the awareness and resources for IBC that are urgently needed. Thanks to your powerful forward motion in the face of numerous setbacks, I know that each one of us that works to stop IBC from taking the lives of women will make a difference.

    I have pored over your blog posts to learn your history with IBC, and I am both amazed and terrified. You have weathered horrific trials with your integrity, purpose, and love for God and your fellow human stronger than ever.

    In a just universe, you would have a reprieve after all that you have faced,to move forward after IBC and leave it behind. In a just universe, none of us would have to face it even once. You faced it a second time and now you are still moving forward. I wish with all my heart, and am praying, that the Taxol that took it’s toll on you has done it’s job, that your future and amazing legacy will be secured, and your beautiful boys can be blessed by their mommy for decades to come. You have helped me to be less afraid.

    You are a scientist, an advocate, a wife, a mommy, a spiritual seeker and a powerful woman, and you manage to do and be all of this with cancer fighting you for your life. Bless you Susan. You have made a profound impact on my life, my survivorship, and my future.

    Wishing you peace, happiness, and health in the coming year,
    with great respect,

    Elizabeth,
    IBC sister and aspiring IBC awareness advocate

    *****

    Happy New Year!


    Read Susan’s blog at Toddler Planet

    So good to wind this one down. It was a good year.

    This was the year I moved forward out of cancer land, getting stronger, putting the experience behind me while looking forward to doing something good. I have heard it can take a good three years to start feeling “normal” again, whatever that is. Normal before was a woman 45 years young, now normal is middle age. It’s ok, it feels like at least I’m moving into an energetic middle age!

    While my personal journey is moving along, I continue to be amazed at how many people still have not heard of Inflammatory Breast Cancer. I’ve been talking to a lot of strangers lately, and not a single one knew what it was. The only one who had even heard of it was breast cancer survivor I met having tea with my girl. She had just had a recurrence 16 years later, and she was 80(-ish??) years young. I look around me and I see women everywhere getting the word out, and yet so few still know!

    And, I continue to see the cancer beast at work in the lives of children, when I go to work. I hate it. One of my patients today was a young woman with leukemia. I just read “The Emperor of All Maladies”, a fascinating book about the history of cancer and cancer treatment. I have a new understanding of this cancer, as well as a deep appreciation for the drug that only came into use just in time for me and my contemporaries. I am acutely aware that without the persistent efforts and numerous setbacks of many, many dedicated people, I would not be alive today. This young woman will likely recover, but she’ll have to fight, and fight hard. Research is what it takes, lots and lots, persist, test, develop, learn, while in the meantime so many are just trying to stay on the planet until the new breakthrough that could cure them. The work is never done and I hope 2011 shows me more clearly how I can do my part.

    Three years ago at this time I was just coming pack from an exhausting ordeal, breathing a sigh of relief while keeping my fingers crossed, knowing I would be challenged to stay in present time for the next three years, as I faced the major hazard period for IBC.

    Tonight, as I write, I am taking inventory of my body and it’s odd complaints and it’s aches and pains, hoping that I can truly say that I remain NED. February will be four years.

    I am not quite such a scatterbrain I think. Chemo-brain is giving way to just being middle aged. Not so bad. My energy is slowly but surely coming back. It has taken a long time! I was beginning to think it never would. I have learned that I can’t neglect self care, or I pay more dearly than I did before.

    I hope 2011 brings in more increase, in strength of mind and body, and in focus. I feel so unbelievably fortunate to be here for another flip of the calendar, another fresh new year to dream up.

    Another year older, another year I can thank God for.

    I cannot let the year close without appreciating the amazing women I have met as this year began it’s descent, when I picked up the proverbial cyberpen and began writing again. Susan, Donna, Valerie, Joanna, Julie and Jan, Vicki, and so many more who have touched me by their courage, grace, and activism. I am humbled to be in your company.

    May 2011 bring peace, health, and serendipitous blessings!

    This is a special time of year for me. Not just because it’s Christmas, but because somehow I managed to skip being sick at this time of year. The Christmas before my diagnosis was lovely, and then I was diagnosed in late February. By the time Christmas 2007 rolled around, I was sporting cool short Annie Lennox hair and feeling pretty good! I spent it in Seattle with my family, and I was high on life, grateful beyond words to be still around and not sick. My husband was a nice guy on the periphery of my world, and 2008 brought him right in. It was a wonderful time of joy and appreciation. Somehow that feeling is now linked permanently with Christmas, and each one since then has felt indescribably blessed.

    This Christmas is my third year after cancer, currently No Evidence of Disease (NED). As I am grateful and mindful of this, I am acutely aware of all the women I know who are still dealing with it. I am also acutely aware that this could change any time for me. Each day is a gift, and each Christmas of health and love is a priceless treasure.

    A woman on my support list who was dealing with a recurrence just had a clean scan for Christmas. Woo-Hoo! God is good.

    We just had our Christmas, because my daughter is with her dad now. So the madness occurred last night and this morning, and now all is calm (and the house is trashed!). It’s kind of nice to be in a quiet space while much of the rest of the world is still shopping madly!
    My husband, my son and I will go to bed early and be up before dawn to deliver meals to shut-ins tomorrow morning. We did this for Thanksgiving, and my husband got a call earlier this week asking for our help again, because they were terribly short handed. This surprised me! I guess folks don’t want to get up that early. Denny’s, here we come!

    I give thanks today for the light of hope and gratitude in my life. May your holidays be filled with every blessing!

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    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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    I remember those days.

    One day, during chemotherapy, I just couldn’t get comfortable. No matter what position I settled into, sleep eluded me, and wakefulness was no fun. I stumbled out of the bedroom and out into the kitchen where my boyfriend was puttering, and told him I just couldn’t take it! I was sick of it!

    He patiently listened while I told him what was bothering me. He didn’t try to fix it, he didn’t try to make it go away or tell me everything was going to be ok. He just listened. After that, I felt better.

    There were other times as well, many of them. I learned to keep a few tricks up my sleeve for those days. These are the things that kept me going, one weary step after another to the finish line.

    1. Distraction. I had several really good reads stashed. When I was on Taxol, my eyes would be really bad for a few days, and I remember affectionately being out with my dear friend Christy and buying another pair of readers to put on top of my regular specs. It worked! I looked funny, but I could read. Good movies are another welcome distraction. Funny ones are especially good, but whatever I could get lost in was great.

    2. Get support. Good ol’ Flo, my buddy, would get my tearful calls. She would commiserate (been there, had that stuff, yup, it does feel like Drano in your veins, it’ll ease off soon) and her husband Don would call out in the background, “This is TEMPORARY!” My mom was good for that too, although it was hard for her. Some folks weren’t. My significant other at the time would get frustrated that he couldn’t do anything about it. I didn’t call him. I let him do other stuff for me (like make me laugh) but not usually the “I’m so miserable” call.

    3. Nurture your soul. Whatever feeds your heart, deep down, will surprise you with the energy you have for it! I got out my paint brushes for the first time in 20 years. It was wonderful!

    4. Give yourself a pep talk, and let others give you one too. Remind yourself of how far you’ve come. Even if you’ve only done one infusion out of eight, that’s one down and one less to go. Make little black boxes and check them off if it helps. Whatever it takes so you can see progress will keep you motivated.

    5. Read, listen to or watch something really inspiring. I used to keep a copy of “Remarkable Recovery” under my bed, in easy reach. It was full of stories of people who had recovered beyond expectations, in a number of ways from a number of illnesses, including rare and aggressive cancers.

    6. Be taken care of like you would care for your beloved child. Cozy blankets, hot chocolate in bed, whatever makes you feel nurtured, body and mind. Get a gentle massage from someone who is skilled and careful. Have someone who is caring for you make you something delicious.

    7. Make plans for all the great stuff you’re going to do when you finish treatment! Daydream, make lists, whatever puts the future without feeling rotten within reach.

    8. Have someone take you to a beautiful place that restores you, like the beach or a beautiful garden. Or, if you’re well enough, pack a picnic and take yourself!

    9. Give yourself small rewards. I used to go get a Jamba juice after every infusion, if Flo hadn’t already brought me one!

    10. Read all the loving messages you’ve received on cards, on the internet, and anywhere else. Let them remind you how supported you are.

    11. Make your own list, and make it full of choices. Do it while you’re not feeling like you just can’t take it anymore! Include very easy things so there is always something to do that could make it easier to move one more step forward.

    12. Pat yourself on the back often! This journey is not for the faint of heart! You didn’t choose to be on it, but you’re a trooper for staying the course.

    Any more ideas? Send them on!

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    When I look back at the entry I posted yesterday, I am reminded of the amazing way that so many people stepped in to support me as I went through treatment. What’s interesting to me now is that I don’t recall anyone actually asking me what I would like them to do! I was blessed in the extreme. Very seldom did a need pop up that wasn’t met before I even asked.

    What everybody did was perfect. It was not usually what I might have expected, but it was what each person did best and it was always wonderful.

    The Charge Nurse on the 5th floor at Mills (where I had been giving inpatient massage once a week) organized a meal sign up for my family. She put out the call, and many of my co-workers signed up to bring meals. All I had to do was tell her when the infusions were, and when the worse days would usually be.

    Several of my colleagues in the Massage Therapy department took it upon themselves to see that I got a massage every week while I went through chemotherapy. One of the therapists chose to make soup instead. Every Friday she came over with fresh, delicious soup and a little visit to cheer me up.

    My friend Becky, who went to comedy improv class with me, heard the news of my diagnosis and announced, “give me your address. I am going to send you a wonderful healing card”. And she did. Again, and again, and again, pretty much once a week. These were not just cards. They were wild, wacky, exuberant, sometimes soft, always beautiful amazing works of art. Even the envelope would make me smile.

    My boyfriend, Steve, would call me every day on his commutes, and make me laugh. He also helped me get through it knowing I was still a beautiful woman. On rotten weekends he would take care of me, and on good weekends, our four kids and the two of us did normal things. That was all so important. He stayed with me for most of the journey, and we parted friends.

    My mom, who was far away in Seattle, surfed the net for information and hope, and passed all the good stuff to me and kept the scary stuff to herself. Poor mom. That was a heavy burden, and she bore it without complaint, or even letting me know there was anything but the good stuff.

    Other parents took my kids to school. Flo, my #1 sidekick and all around support person, recruited her husband Don and they took the children out regularly, and helped me get them to bed. When I would call Flo up and complain of how miserable I felt (she knew about it, she’d been there) Don would call out in the background, “remember to tell her it’s TEMP-O-RA-RY!” and I would sigh and take heart.

    Several dear friends and family members flew down from Seattle, or ventured across the bay, to stay and take care of me during the yucky chemo days. Susan (I’ve known her since 6th grade. The kids call her Auntie Pickle), Christie, my mom, my sister, Holle, Aunt Ding Ding (Darlene, Ding Ding since we were babies), my sister in law Andrea, they all took their turn.

    Terry took me to Filloli gardens once lovely spring day. It was perfect.

    My brother set up a Netflix account so I could watch funny movies. The night after my surgery, my mom and my sister howled as we watched “the 40 year old Virgin”. Mom hired me a cleaning lady at the very beginning, and kept her until I was strong again.

    My friend Melissa made me the most wonderful collection of delightful, wacky hats that I had the audacity to wear frequently. They always brought a grin when I went to the infusion center with one of those on my head!

    So many people watched my Caringbridge journals, and left wonderful messages in my guest book. I would go and read them when I felt really rotten.

    If someone you know is facing cancer, don’t stress about what you can do to help. Do what you love to do, do what feels natural. You will certainly be a blessing.

    Looking back, I am again amazed and in awe of my army of angels.

    Why do I sometimes embrace the pain of life without allowing myself the pleasure?

    When I was diagnosed, it had been 20 years since I had been on a stage. It had been longer still since I picked up a paint brush. I hadn’t taken a walk on the beach for months. Rediscovering these things brought me back home to myself. In the weeks before my mastectomy, I painted my room purple, so I could bask in my favorite color while I recovered.

    The day after surgery, I began a piece of art with a Sharpie. I thank my lucky stars that it was not my right side that was compromised!

    Just after I began radiation treatments, I auditioned for the part of the White Witch in a local production of “Narnia”. I had very little energy, and I saved it for rehearsals. I worked out my cancer angst rampaging around and turning little creatures into stone, and cackling madly! Did I feel worse for it? No! It was SO MUCH FUN!

    What’s the big deal about fun?

    Pleasure and fun make me feel the thrill of being alive, and gratitude for it. Fun is exhilarating. Exhilaration means endorphins, the body’s own painkiller. It’s wonderful medicine.

    Things that give us pleasure take us to that place where time stops, and we can become lost in what we’re doing, hypnotized, oblivious to pain or worry. When I’m doing mindless tasks that I don’t enjoy, the clock ticks away slowly, but at the end of the day I feel that time has slipped away between my fingers. When I am completely engrossed in something wonderful, every moment is timeless. I am utterly and completely in the present. This brain state is known to be a healing state.

    I certainly felt that as I sought these experiences, I came back to a life I had forgotten I had, to joy that I had forgotten I could feel.

    Where my life had felt like I was trying to climb out of quicksand, now it felt like my life was something worth fighting for.

    Simple, physical pleasures can make pain fade into the background. When I was receiving chemotherapy, and my body hurt, I was blessed to receive a massage every week. I will never forget the generosity of my colleagues at Mills hospital who came week after week and gave me massage; Jim, Lee, Mike, and my dear friend Susan who came all the way from Pleasant Hill and gave me the comfort of touch. During the hour I received, the aches went away.

    Cuddling with my children, reading them a story, or singing them a lullaby took my focus away from illness and brought it right into the stuff of life, right here, right now.

    Even now, when the spectre of a life cut short is not so directly over my head, I notice that when I neglect these pleasures I don’t feel so well. I feel tense and stressed when I don’t make art, sing, or take a stroll on the beach once in awhile. When life feels like it’s all work and no fun, it’s time for an adjustment. Once I shift my priorities, I actually have more energy and am more productive.

    I also believe that what is most satisfying is usually something of value that I can offer to the world. When each of us expresses most truly what’s unique to us, we find our niche, and the world is a better place for our being there.

    What’s really good for me at the deepest level is a win-win for everyone in my world, and my cells know this.

    My Caringbridge blog was good for me. I looked forward to blogging. When I stopped feeling that I had anything to write there, I slowly became susceptible to the blues. Picking up my blog again, in a new form, makes me happy.

    What makes you happy?

    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.

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