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    From the monthly archives: December 2010

    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.



    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,

    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!

    We all know we are supposed to exercise. I was doing well until the weather changed and my walking buddy started having trouble with her ankle. Every day I haven’t exercised has made me anxious! I know I’m supposed to be doing it. I have a gazillion excuses…

    It’s yucky outside. I don’t feel like it. I have so much to do, I’ll do it later, no, I’m tired, it’s dark, whine whine. Thanks to my dear ol’ mom, I have no more excuses!

    Seriously, exercise is really, really important. Study after study shows the benefit of exercise, both as prevention and to reduce the risk of recurrence. It’s also good for just about everything else. I’ve been doing a lot of research on the internet lately. Body mass index and survival are inversely related. The higher the BMI, the poorer prognosis statistically. Exercise also impacts insulin resistance, a factor that is becoming recognized as a contributor to the development of cancer. I have a love/hate relationship with exercise, as I’m sure a lot of us do.

    I do great for awhile, and my body, mind and spirit hum. Then something gets me off track, and the all or nothing gal that I am not only drops the ball, I roll it down the hill behind me!

    So, this technological device is worth its weight in gold to my way of thinking. I can choose from a number of clever games that are just that, games! I’m being a kid, throwing snowballs at my family or being chased by a dog on my bicycle, and I’m getting exercise.

    Not only me, but my children as well! My son is very competitive, and the thought of mom doing better than he does is intolerable, so he is now effectively weaned from passive video games in favor of exercise.

    Something else I am noticing, which seems an obvious metaphor. My husband, who is calm to the point of being aggravating to his high-strung wife and step kids, leaves us in the dust when it comes to balance games. Now, this is my focus. Balance! I will be a penguin on an iceberg, cruise down the rapids in a bubble, dodge panda bears and shoes with my head, and any number of silly games to achieve balance first. I feel calmer at the end of the day when I’ve been doing that.

    My journey into this world of advocacy and awareness has been startling, terrifying, and exhilarating. During my entire journey through cancer treatment I really managed to not know what kind of trouble I was in. I didn’t want to see the scary parts, I just wanted to plow on ahead in warrior mode, pass the finish line and be done with it. I blogged all the way through, and then when it was all over I got depressed.

    Then, I got scared. So many of my blogosphere friends dealing with metastatic disease, so many blogs gone because another woman lost her battle. Terrifying and humbling, this. I alternate between terror and survivor’s guilt. Today where I stand is committed and awake, painful as that has been to get to. I have combed the statistics. I have pored through women’s stories. I have faced the impact of my current choices, and improved them. Life is a gift I cannot take for granted, and I need to keep on fighting for those who can’t anymore, and for those who are gone.

    What am I fighting for? Awareness, a cure, and a future without breast cancer.

    And that crazy Wii? Thanks so much Mom. I’m not facing chemicals anymore, I’m creating my future without cancer to the best of my ability, God willing, and you’re still helping.

    I never could do it without you!

    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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    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.


    Wednesday, April 18, 2007 12:46 PM, CDT
    Feeling anxious and discouraged today. I guess I get to have a bad day sometimes… could be worse. I’m nervous about the next infusion, and I’m tired of it all. I’ll be getting infused every darned week, and I am not enthused.

    Improv was great last night! Worth saving my energy for. I was lucky to get to go, because the children’s father is out of town and he usually keeps the kids on Improv night. My wonderful neighbors, Becky and James, took over so I could go. Thank you, thank you! Improv is therapy. I’ll keep going even if I just watch! Fortunately last night I played.

    I’ll see Dr. Brown today, and maybe she can ease my fears. I just don’t know how my body is going to react to these chemicals. Once I have it behind me it will not be so bad… Flo says the anticipation is much worse than the real thing. I’m also discouraged because I will still get herceptin every 3 weeks after the rest of chemo is done, until it’s been a year. That’s next April! It seems like such a long time to wait to feel really well.

    There’s my whine for the day. I’m still lucky when I consider the alternative!

    My Aunt Darlene is coming today for a few days. No doubt she’ll cheer me up!



    Present time postscript:
    Dr. Brown confirmed at the time of this writing that the cancer was in retreat, which made all the difference. It was timely right now, after how I’ve had a fear recurrence, to be reminded of how well chemotherapy went well for me.

    I wonder, does the fear ever go away for good? I would like it to, because it is unproductive.
    Seeking the formula…

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    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:

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    I am going to see a surgeon tomorrow.

    No, no catastrophes, just some funny shooting sensations in my right breast, the one I have left. The one I chose to keep, a decision I have not regretted until now. Now I’m just wondering.

    I detest surgery, and I don’t want to wonder what could be hiding in my remaining breast, which is as dense as the other one was, the one that blossomed into a fiery inflamed breast in a matter of weeks. Did I make a mistake not having a double? I’ve been so glad these nearly four years that I still have one.

    Tomorrow I will discuss this with a surgeon, one I have never met. I had to switch insurance carriers after I went through treatment, because I lost my job. If it was my other surgeon, Dr. Metkus, I would not be afraid of the knife at all. I trust her. Tomorrow will tell if I trust the next one.

    I guess if I decide that more surgery is a good idea, I will make sure I feel good about the doc or I will seek until I find one I feel great about. Maybe the doc I see tomorrow will be able to reassure me that there are ways to make sure nothing takes me by surprise. That would be the best news!

    Or, maybe I will have another mastectomy, and emerge for the first time in my adult life not needing to wear a bra!

    Hey, there is a plus to just about everything if you look hard enough…

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