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    (Originally posted on Yahoo Voices, 2012)

    Musings of a One-Breasted Goddess

    I’ve been a uniboober for nearly five glorious post cancer years, and I know that I won’t change it. How can I know?

    I appreciate so much that if a woman wants reconstruction she can have it, and insurance will cover it. That was not always the case, and that’s just not kind. Every woman who loses a breast should be able to do what she needs to do to recover and feel whole.

    The reason that I will not reconstruct is that right now I am whole. I am missing one appendage. I have sensation and movement in my whole body, and my pectoralis muscle is intact. I don’t have any foreign objects in my body. That to me is whole.

    It doesn’t make sense to me to chop and numb other parts to give me back a breast, one that isn’t even like the one I have. My new breast would not have sensation, would not feel or look the same, would not respond to a lover’s touch. Would I ever be satisfied with this?

    Maybe if it could be a real breast, I would be satisfied to lose sensation in my belly, have my skin stretched, distort my pectoralis muscle so that it could not move freely, and to re-injure my entire left side and once again lose sensation to my elbow, across my back, into my neck, and across my chest. Maybe it would be worth three separate surgeries, sacrificing pieces of my beautiful, sensate muscles, the risk of infection, scarring that disfigures the new breast, tampering with the healthy breast, the risk of silicone leaking into my system, and the further trauma to my body that could leave me vulnerable a cancer recurrence.

    Since any new breast I would get would not be the real thing, why would I want one?

    I understand that it would be convenient to never have to search for my prosthesis if I misplace it. I would have cleavage, which I do miss a little. Perhaps I would feel less fearful of a lover being put off by the scar across my chest. Fortunately I understand that I am still a woman without cleavage, and my partner loves both sides of my chest.

    What doesn’t make sense to me is that my journey and recovery has been all about reclaiming the parts of me that were lost. If I want no part of my heart and spirit to be numb, if I want to feel everything, what sense does it make to cut off sensation and movement from large areas of my body? I want to feel it all, enjoy it all, be it all, body, mind and spirit.

    And, can a deeper healing come from acceptance?

    Maybe providing the new appendage makes it possible to not feel the pain. However, I believe that true healing means to feel the pain, let it go, and claim another part, the part that was numb or hurt, until I feel all of me. I grieve for my beautiful breast that nursed my babies, quickened at my lover’s touch, and is gone forever. I feel the ache, and I feel my chest, my belly, my heart. I move my body joyfully and with gratitude.

    I think every woman must do what feels right to her, and I believe that every woman should be encouraged to think it through. These days it is assumed that every woman who loses a breast will reconstruct. What isn’t discussed at length are the disadvantages and the risks. Nearly one third of all reconstruction surgeries will have some sort of complication, or less than ideal outcome.

    I miss low cut dresses, shelf bras, and sexy matching underwear, but not as much as I thought I would.

     

     

    Well, here it is. Breast Cancer Awareness Month. Fortunately I am very, very busy, rehearsing for Narnia. Yes, I am the White Witch again! Five years ago, I was rehearsing. My daughter was 7. Now she’s 13, and playing the part of Susan. My husband, who I had just met in 2007, is playing Father Christmas. Five years ago I was a lot skinnier. My husband says I was scrawny. I was sporting the Annie Lennox look.

    Breast Cancer Awareness month is hard. While I so appreciate the funds that are raised for research, I detest the sea of pink and the pink labels on things so people will buy. It’s the good and the greedy all mixed together. My daughter confessed that she hates it as well. All during the month of October, she is reminded that she could have lost her mother. Two women on my support list announced that they are stopping treatment this week. It’s hard.

    All the dancing, writing, driving, working, has made my muscles sore. I am sore on my right side, and I noticed it just below my ribcage on the right side. I began to worry about liver mets. That happens every so often. An ache or a zing of some kind, and I worry. Someone on the list had a recurrence 6 years out. I don’t like hearing those stories.

    I stretch, I take care of myself, I watch the aches and pains, but mostly right now I’m having a blast. It’s family theater. The cuteness factor is extremely high, with little woodland fairies, animals, and cruelies, who are the witch’s minions. I have the most delightful little dwarf, my personal henchman, a ten year old named Amy. The adults in the show are there to do something magical with their kids. I appreciate all of them so much!

    If you want to see some great theater (really! We have fabulous talent directing this year), go to www.bayareaetc.org and get tickets to see the “Wardrobe” cast. We perform Friday night November 2, Sunday Matinee on the 4th, and Saturday November 10.

    When I started this blog, I came to know several other survivors in the blogospere. It is painful to me this October that they are all gone, all but one. At least the ones I knew well. I know it’s not because none of us survive. I know for myself that moving away from life being about cancer and into the next chapter tempts us to forget that people need to know we’re here. Many who make it get quieter, as life resumes. I have done that many times.

    For those at the beginning, know that I am one of many. It has been over five years. I’m still here. At the moment, cackling madly, turning little children to stone, singing fantastic music, and sharing the stage with my beautiful teenage daughter.

    Now, to bed.

    I have been in the middle of a five year crisis. I got a little off track. Fortunately, not far, just a little. I have course-corrected and I feel excited about life again.

    When I faced IBC in 2007, I felt deep in my bones that I would be all right. This wasn’t even logical, which fortunately I didn’t know. I just felt intuitively that the path to my survival was the path of total congruence. This is a loaded word for me. It means integrity, and by this I mean true. My life had to be the truest, more joyful expression of me that I could make it, or I wouldn’t make it. I felt deeply that I had to uncover all the joy in my life that I had been putting off until it was my time. In February of 2007, I knew that I might not get any more time. I had to make every piece of my world a reflection of what mattered to me. It was not only what I wanted to do, but it was what I had to do to get well.

    As I emerged from chemotherapy and surgery, I was back into my creativity full swing after having let it sleep for decades. I started making art, and had an art show at the Healing Store at the hospital where I was working. Some people bought prints. It was exhilarating.

    As I began my radiation treatments, I felt called to the stage after a 20 year absence. My daughter was doing theater that summer, and I found out that the main stage show was going to be “Narnia”. Waves of joy flooded through me and I knew I had to play the White Witch. It was glorious. The music was glorious, cackling and turning little children into stone was glorious, finding that my voice had continued to develop and mature without me paying an attention to it was glorious.

    Being fully self-expressed was my lifeline. I developed boundaries, much to the dismay of my children. I decided that if it wasn’t fun, if it didn’t make me happy, I wasn’t doing it. Most of all this applied to work.

    As the terror receded into the past, I began to realize that my commitment to self expression had waned as well. Hence, the crisis. I wasn’t bouncing out of bed happy to be alive as I did back then, just after being plucked from the lion’s jaws. In 2008, I was so happy every day that choosing the path to joy was easy.

    What if from the very beginning, each of us learned to express ourselves truthfully in every area of our lives? Would we even get sick? When I got sick, I hadn’t felt much but resignation and stress for a long time. I was a burnt-out massage therapist recovering from a soul-killing marriage and ugly divorce, with two hurting children. I didn’t see any light at the end of this dark tunnel.

    When I was told “you have cancer”, I knew I had to find it or die.

    Lately I’ve been busy writing, working at the children’s hospital, seeing private clients, and looking for the opportunities I may have been missing to be wildly creative. The book got back-burner’d for a little while as I stretched my freelancing muscles for paying clients, including some web pages for a silicon valley consulting company. Bay Area e.T.c. is doing “Narnia” again, and now my daughter is an accomplished thespian who could shine in any role she gets. She will audition for the part of Susan, and I am preparing to bring an older, wiser, slightly rounder, certainly more energetic White Witch to the stage. My husband is even planning to get in on the fun.

    A woman’s gotta do what a woman’s gotta do. What is it that you gotta do?

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    I truly can’t wait until next Wednesday…

    I have one foot in the school routine and the other in the last gasps of summer, and I say enough aready…

    My son started high school last week. So far, so good! My daughter starts the seventh grade next Wednesday, and at this point if I try to hold her to a sane schedule she accuses me of ruining her summer. Ah, the drama! No wonder we do theater together.

    What I want desperately is some sleep, and next week I shall have it.

    I have had a lot of ambition for these last few days, and have fallen miserably short of everything I wanted to get accomplished before Fall hits full swing. I am going to be busier this fall than I have been to date since I finished cancer treatment over four years ago. I am wondering if I will be able to keep it up, grateful for the chance. I am working more at the children’s hospital, the drama club will be resuming, and I have another part time job visiting elderly folks who need a bit of sunshine (this doesn’t feel like work at all). I also am determined to be a super organized mom (there’s a stretch) and may be in the next musical, not sure yet. My mom would caution me against trying to do too much.

    I kind of think “too much” depends on what the too much is. Is it something that drains me or feeds me?

    Am I excited about it?

    Can I recover my momentum if I have one of those crazy no sleep nights? What’s my recovery plan if I get too insanely overwhelmed? Will I miss out if I don’t do these things?

    Are my eyes too big for my stomach, as the saying goes?

    Better to stretch than to shrink, and I can handle it. My backpacking trip restored my confidence in my ability to take some lumps, so here goes. My kids are transitioning, and so am I.

    And, that iconic five year anniversary looms in the near future. I am almost superstitiously afraid and also contemplating a deep sigh of relief. Five years is not a promise, but it makes things look better and better.

    My daughter is at her dad’s tonight, and I am going to bed early!

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

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

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

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

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

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

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

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

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

    Hope to see you there!

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    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!

    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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    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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    My cancer was very hard on my children. The tough part about that was that I was not strong enough to give them everything I wanted to, to help them cope with it.

    Remembering the dream I had about Felicia crying and crying, a bottomless well of grief as it seemed, I really wonder what it is like for a young child. My son, who was nine at the time, went from irascible and boisterous to quiet and well behaved. He acknowledged to me later that he was scared out of his mind. My daughter acted angry all the time, and berated me,

    “Ever since you got cancer all you care about is yourself!” Her little seven year old soul found it easier to believe I was being selfish than to know how sick I was.

    Obviously, I had to take care of myself, or I could not hope to be around to raise them! It was heartbreaking.

    So, how can we support our children when we are coping with cancer treatments and everybody in the neighborhood is caring for them?

    I got my children into therapy, and I am glad that I did. I discovered that my children did not want to burden me with things that bothered them, because they did not want to cause me stress. Their father and I are divorced, and unfortunately, meaning well, he encouraged this. Therapy was a safe place for them.

    A friend of mine sent a book that was also helpful, by two sisters named Abigail and Adrienne Ackerman, called “Our Mom has Cancer”. My daughter read it over and over.

    What I did was hold on to our bedtime ritual no matter what else was going on. I have always been a working mom, so our bedtime was special. Each child had his or her own special songs. My son liked gentle nerve strokes on his back, and “one more shiny minute” (that meant two!). My daughter had different songs, and her own ritual.
    During the long months of treatment, if nothing else I managed the bedtime ceremony. The two times I was too sick to do it were the worst part of the journey.

    Now, three years later, I know they have been affected, but they continue to do well. They still see a therapist every so often. They are accustomed to me taking a rest in the afternoon if I need it. My daughter laughs now about calling me “baldy” during those hard days. Now, at 11, she is very kindhearted. My son is his old irascible self, and he still crawls in for a cuddle in the morning (don’t tell his friends!)

    I think it is important to recognize that maybe we can’t give our children all the support they need while we are engaged in fighting our cancer. There are resources out there. So much of dealing with cancer is saying “yes” to help, whether just for us or for our families.

    The goal is to survive to see our kids grow up. To do that we must take care of ourselves, and that includes accepting help to care for our children, both their little bodies and their precious spirits.

    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?

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