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    Today, so tired, weary to the bone, satisfied.

    I have been at the hospital today. So easy to forget that hospitals are full at this time of year, just like other times. Actually, more. This long, cold, dark season is the time when people die, more than the other 8 months combined. People eat and drink too much. People who are very ill hold on for one more Christmas. People who are lonely feel the loneliness more deeply.

    Today, my mind is filled with images. Images of a beautiful young woman on bed rest so she can keep her baby inside, where it is safe and warm, for as long as possible. A boy and his dad, looking at the train. The boy is about five, and he is bald. He is unconcerned.

    Another boy, dying. I could give him 45 minutes of peace, and that was all I could do. He has beautiful eyes. My heart breaks for his mother. He is not yet a man, but close. Likely the peach fuzz on his face will miss becoming a beard.

    My daughter wants everything right now. Her cell phone is malfunctioning. It is a crisis. We must go to Verizon now. The world is coming to an end.

    No, it is not, the leaves are such a beautiful color, we are all warm inside our house, no one is ill, I got to talk to my mom today, all is well, must we have drama!

    I am such a crankmonster….

    Today I pray for patience. I pray that I can remember to appreciate that small everyday suffering needs my care and concern as much as the devastating stuff. I pray for the small reminders that come from a benevolent higher power, reminders that life is sweet, and beautiful even when it is hard.

    What do I know of the story of the dying boy? His story is between him and God, and for all I know it is sweeter than I could imagine. My own story of suffering makes perfect sense to me. Perhaps his makes sense to him.

    Today I pray for reminders to enjoy the light that is always visible when the days are cold and dark. I pray that I may not be numb to the need that surrounds me during this season of festivity and celebration.

    Today I offer a prayer of gratitude to life, to love, to community, to having all that I really need. I pray for the ill, the weary, the poor, the hospitalized, the lonely. I pray for the caregivers, who must pace themselves carefully and not become bone weary.

    I pray for my rambling, weary pondering self to get it together and make dinner!

    Ah, the sweet challenges of life, what a blessing is each one.

     

    What a long, delicious day.

    I am now recovering from 5 hours of shopping with my girl, so grateful for this special time with her. We ran into friends while we were out, and there was plenty of squeals and hugs. Later, we ran into Felicia’s preschool teacher. She was flabbergasted! Felicia was taller than she was.

    The years fly by, so rich, so sweet. My fellow bloggers are posting about traditions, cherished time with family.

    So many women in different stages of treatment and survival. Stage IV NED, Stage III and IV in treatment, stage IV in remission, Stage IV and fighting, NED post treatment, mothers, grandmothers, daughters. My friend Floyd, after a recent heart attack, conversing with me about what a blessing life is.

    Yes. Every minute, every day.

    Yes, the economy sucks, I can’t spoil my children as I would like, but we are ok. I chatted with my girl about exercising and eating her vegetables. It’s light and warm at home and my husband and son are amiably crashing cars in cyberspace. Life is good.

    A few of my friends are taking a “chemo break” so they can feel good over the holidays. I wish them all the sweetness and love they can hold.

    During this dark of the year, let us enjoy the light in the darkness, the love that always sustains.

     

    I feel very reassured after seeing the surgeon, and full of questions as well. I learned some very interesting things.

    He assured me that the types of discomforts I’ve had are quite normal for someone like me, just in the early years of menopause. He clarified that yes, my odds of developing a cancer in my other breast are somewhat higher than someone else’s, but he expressed confidence that such a thing would not sneak up on me. We are being super vigilant, and anything that appeared would be caught immediately. It is also more likely that if I developed a new cancer it would be hormone responsive. IBC is less likely to hit my right breast and more likely, if it were to recur, to show up metastatic.

    In his experience, IBC is a pathological development that occurs when there is an existing breast cancer that has not been discovered. Sometimes this is referred to as the primary neglected cancer. That doesn’t mean it shows up on a mammogram. Often it does not, because it develops in nests or sheets. That doesn’t mean they are not already there before the inflammatory component appears.

    The tough truth I live with is that I had been remiss on my mammograms. I was overdue. It is also true that there was a lump, which I had not felt but my boyfriend had. He had been feeling it for two months and hadn’t told me, because “I figured you knew about it”. He felt terrible about it when he told me. I was angry. Yet, in all fairness, why would I not know about my own breast? Yet, many women don’t. A large proportion of breast cancers are caught by boyfriends and husbands.

    My cancer was Invasive Ductal Carcinoma, the most common cell type of breast cancer. If it had been caught early, it is the most curable. I will never know if my Inflammatory Breast Cancer was the “sleeper” kind that hides until it erupts, or just a neglected cancer that could have been dealt with.

    What I came away with this morning was relief that I will not be having any more surgery, confident that anything that shows up in my beloved and appreciated right breast will be dealt with quickly, and even more determination to get the 40% of women who don’t get mammograms to do it.

    And yes, check out your own breasts! I’m doing that now, even though I have faith that my husband will tell me if he notices anything. After all, it is mine, and the responsibility is mine.

    And, a reminder from Gaga for Ta-ta’s from Susan Komen for the cure:

    Tagged with:
     

    Hey, I won!

    The thing I sent to Pink Link means I’ll be getting a copy of “Laughter is the Breast Medicine” soon in the mail. I can’t wait to read it, and review it here!

    I think laughter is good medicine for anything. It’s a great strategy for dealing with teenagers, coping with any kind of stress, supporting your immune system, and beating the blues in general.

    I get my daily dose with the kids on every day but Wednesdays. I know I’m stressed if they don’t make me laugh at least a few times in 45 minutes! I have also noticed that if I can find something funny about something that’s really bugging me, it has less power.

    Here’s something therapeutic if your beloved cat is driving you crazy:

    http://www.youtube.com/watch?v=EKvNqe8cKU4oor

    For my way of coping with being a uniboober, check out my other blog at Everyday Health.

    Sunday, April 15, 2007 7:56 AM, CDT
    Good Morning, it’s a beautiful bright Sunday.
    Last night Steve, Alex and I watched the original “Godzilla”, filmed in Japan with clumsy dubbing and a star performance by Raymond Burr. What a hoot! Katryna was with her gaggle of girls at her birthday slumber party, so we just had Alex. Very sweet.

    I sing lullabies to my kids, and Alex likes them, so I offered. His dad requested Schubert’s “Ave Maria”. What a nice way to end a peaceful day. even with the remnants of a cold in my head.

    In the wee hours of the morning, I dreamed of Felicia. She just wanted to be held and held. She doesn’t understand this as well as my son is able to, and she’s scared. I’m glad that when I pick her up on Monday I wont be so sick, and I can handle it if she soothes her rumpled little soul by calling me “baldy”.

    It’s cruise from here, yippee… at least until the next chemo. I’ll be more relaxed when I know what that’s like, after I get past the unknown and through the first Taxol/herceptin infusion.

    When it started, this journey just looked like such a long, arduous, potentially endless trek…It’s so good to have passed one landmark. Now I can feel that this path has a beginning, steps, and an end, in sight. I don’t ever have to see those particular chemicals again, nor some of the medicines I had to take with them.
    On to the next thing, and further along the path. Yes!

    Steve got me a tomato plant. I’ll put it into the ground today, and it will bear me fruit after these chemicals are all done!

    Happy Sunday!
    Love,
    Elizabeth

    * * * * *

    Current time postscript: it does me a world of good to look back here and see how I didn’t doubt. I wonder if that had something to do with it working? I assumed that I would never see Adriamycin and Cytoxan again, and I saw progress towards the goal.

    One thing I struggle with is fear that my deep confidence is testing an unkind universe to strike me for my hubris! I know that’s crazy, but it’s that old “waiting for the shoe to drop” kind of thing. I don’t dare consider myself triumphant yet I feel as if I have won, am strong, and have work to do. I have to hold on to my belief in a benevolent higher power, who would never strike me down for believing the best.

    If my cancer were to recur, would I have failed?

    Do I not hold on to the belief that I have overcome, because it makes me feel strong, or do I humbly hold the jury to be out on that one?

    A minister friend of mine dared to prophesy that I would grow old, and hold my children’s children in my arms. He told me that I have overcome.

    Of course I fear recurrence, now that I am acutely aware of how much it happens. I have to make the choice not to let that fear distract me.

    Right now I’m here, and determined to make the very most of the time I have.

     

    Today one breast cancer death is in the spotlight.  One high profile woman who advocated for breast cancer awareness, and fought for health care reform, has died before her time.

    Elizabeth Edwards was aware that she had resources that many women do not have.  She was deeply concerned for women who are uninsured, poor and under served by our health care system.  Each one of us who is currently dealing with breast cancer or who has had it, can feel the blow of one more who has left before it was time.

    Today I am mindful of the ones who I have come to love that I never met.  Today I mourn for Andrea, Jo, Susan, Modmom, J, Julia, Katie, Jen, Lisa, Manda, Amber, Renee, Sue, RivkA, others whose names I do not know and for Marianne, who I knew personally.  All of these women left before they were ready.  They were pathfinders.  Their journeys, and their passing, never leaves my awareness as so many of us work to get the word out about screening, diagnosis, and the research that will create a future without breast cancer.

    I am in appreciating of the women who are still here, doing what they can, working to help women get diagnosed, cope with treatment, and survive.  I am grateful to my friend Valerie, an IBC survivor who continues to push for more and better research about IBC.  Vicki Tashman, founder of PinkLink, is providing resources for a healthy survivorship and support for the newly diagnosed. There are many others.  I stumble on them during my meanderings on the webs.  They all inspire me.

    My fellow IBC bloggers, many of whom are battling metastatic disease, are relentlessly getting the word out, raising awareness, and coping with cancer with amazing grace and courage.

    I am sorrowful today, and I am committed.  I am part of the Army of Women, literally and figuratively.  Please join us if you have not.  I can believe in a world where my daughter doesn’t have to be a warrior, and needn’t grieve for the wounded and the fallen.

    Goodbye, Elizabeth.  We will miss you.

    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?


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

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

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

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

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

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

     

    You may have noticed my new icon to the right, the link to Army of Women. This organization is the brainchild of Avon and Dr. Susan Love, and it’s purpose is to end breast cancer by learning how it starts in the first place.

    This is a question researchers have been asking, but finding people to participate has been the main obstacle. To find out the answers, researchers need no less than an army!

    If you have never had breast cancer, you are needed. If your mother, sister, grandmother, or any other close relatives have had breast cancer, you are needed. If you are fighting it you are needed. If you are a survivor, you are needed!

    We are all needed. Women, men (yes, men!) survivors and everyone else, the research that will answer the question will take an army.

    If you join the Army of Women, you will be invited to participate in research, but are in no way obligated. Being part of the Army of Women means that you stay up to date on what’s happening in the research world. You can be part of it at whatever level you want to be.

    I’ve joined the Army of Women. I’ve joined it without hesitation, for my sister, my friends, my mom, so many women and men that I love. Most of all I joined for my beautiful 11 year old daughter, Felicia. I am imagining a world where she can grow up free of the fear of breast cancer.

    For more information, click on the purple Army of Women link on the right. Please join us! You are needed!

    This may be a rant.

    I was roaming around on the internet, looking up Inflammatory Breast Cancer.  I am always curious, because there is a lot of useful information and a lot of misinformation.  I ran across an article by a doctor, entitled, “Inflammatory video about Inflammatory Breast Cancer”.  Her goal was to ease women’s minds, because the video was “exaggerated” and was causing “unwarranted” fear.  She pointed out that since IBC only affects about 3,000 women a year in the United States,  it is unlikely to be a concern for most women.

    I left her a piece of my mind!  Alas, I cannot find the thing again to cite it for you.  I think that’s a good thing.

    This doctor also pointed out that the symptoms were just like symptoms many women have that are usually nothing to worry about.  This was causing undue fear, she said.

    Lady, this is why that video on IBC is so bloody important!

    Nobody is saying that if you have a rash on your breast it is certainly IBC and you are going to die.  What women absolutely must know is that if such a thing appears and does not go away in a timely manner and as expected (for example, if a woman, or a man for that matter, has been given antibiotics for an infection) then it needs to be checked out A.S.A.P.  to rule out IBC.

    The woman I was weeping about the other night was nursing her sixth child when IBC snuck up on her.  She let it go because it was logical to have mastitis when she was nursing.  She didn’t know about IBC.  If she had, she may not have freaked out or she may have, but she would have had it looked at right away, and maybe she would be alive today.  I’m sorry I never knew her.  Reading her blog, I know I would have liked her.

    Does an “insignificant” number like 3,000 a year mean we can ignore it, because it probably wont touch us?  Given the statistics on IBC, this means that between 1,500 and 2,250 of these women will be dead, most probably within 2-5 years.  Is that “insignificant”????  Not to my children, it isn’t!

    Where did we get the idea that anybody suffering a little discomfort is a bad thing?

    World hunger makes me uncomfortable.  Shall I ignore it?  How about global warming?  How about stupid wars?

    Her2+ cancer is also less prevalent than hormone responsive cancer.  It’s a good thing that the doctor who developed herceptin thought it was important.  If he had not, I would not likely be alive today, neither would several of my friends ( most of whom I have yet to meet ).

    When fear may help you, it is a worthwhile experience.  Because children are taught to fear moving vehicles, they look both ways when they cross the street.  If women learn by whatever means to fear IBC, they will not take “no” for an answer when strange symptoms show up and don’t go away.

    Too many women today don’t fear breast cancer.  Such strides have been made that a huge percentage of women survive it.  We think we can relax on our mammograms, our breast self exams, etc.  When my mom would talk with her friends about my disease, several of them thought it was really no big deal.  I guess that was more comfortable for them.

    And when not to fear?   When it doesn’t have the potential of doing you any good.  I am so thankful to this day that when it was really critical, I was not afraid.

    Let both fear and faith be empowering.

     
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