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    From the monthly archives: November 2010

    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!

    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.

    Friday, April 13, 2007 11:58 AM, CDT

    The sun is out, and it’s what I usually call Bleak Friday, but I am not at all miserable, in fact I feel quite well! Just a little queasy, and the solution for that is simply to nosh all day. Not a bad job, considering.

    This is great. The first half is supposed to be the worst, and this is it. Smooth sailing now? !!

    I didn’t get outside yesterday, it was cold and windy. Lovely out today, though. Time to putter in my garden, just a bit!

    Spoke with my family in Seattle, and the kids are having a fabulous time. Martin is with his second cousin, Damien. Those two have been fast friends since they were 3, and no matter how much time passes, they meet again as if they haven’t skipped a day. This left Felicia with Auntie Andrea and Uncle Paul all to herself. Her Royal Highness had a manicure and pedicure ( she described her blue toes with flowers on them, with great glee ), sushi for dinner, and then dessert at the famous Dilletante Restaurant (it’s all about chocolate… and such chocolate!). Today Felicia is with Grandma Anne, perhaps going on a ferry or some such adventure.

    I spent yesterday lounging, reading “The Other Boleyn Girl” (thanks again, Andy!) and reveling in my good fortune to be feeling so relatively well.

    Never will I take my health and energy for granted again! When I am through with chemotherapy I will gleefully fill my body with all the nutrition it can hold, and spend my energy in celebration of health. While I am on chemo, I cannot take herbs, or large amounts of antioxidants, because chemo is believed to work best in an oxygen rich environment. When chemo is done, my body is mine again!

    Then, after surgery, the cancer will no longer be my constant companion. It is hard, living with it, feeling it in my body, always aware of the size of it, even as it shrinks. I am so looking forward to Dr. Metkus wrapping it up in a neat little package and taking it away.

    Today I am going to ignore it, because it’s days are numbered, and I’m halfway through the worst. Thanks Steve, for getting pictures of the rugrats on my website, and for calling me every morning on your way to work. It starts my day right, rain or shine.

    Love and Blessings,
    Elizabeth

    As I have become more and more overwhelmed by what I want to do and more serious about it, I have been noodling all over cyberspace.  What I have discovered is that there are tons of wonderful resources out there!  The trick is finding them.

    What I do is go to a blog I like, then go to a blog she likes, and another, and so on.  It’s a wide world in cyberland, and a wonderful community of serious bloggers who are giving hope, educating, and dealing with cancer with courage and grace.  Today I found Being Cancer Network.  The blog was conceived by a two time survivor who beat the odds, and is now facilitating a blogger network to help people cope with any diagnosis.

    What I am finding is that there is a vast, amazing flow of information and inspiration going on, and all the ideas I have floating in my head about what will be helpful are already being implemented!  That is just SO amazing and fantastic.

    My vision of this site is expanding and coming into focus.  All of this great stuff I’m finding will be traceable from here!

    I found Survivor Profiles.  I’m sure I will add some of my own, but there are some already out there that I can link to.

    The blog network is inspired.  I didn’t think of that one at all!  What a great resource!

    I would like to profile supporters as well, or find supporter profiles so that people who are walking with a loved one on the cancer journey can find wisdom and support as well.

    I think that the most important thing I have learned, that I feel is hugely important to my thriving into the future, is that passion is life force.  I have had many occupations, both paid and unpaid, that mattered to me.  When I was a single mom with a huge responsibility to (in my mind) sacrifice creative passion to practicality, I failed to thrive.  With lack of passion, and with constant, relentless stress, my body was too depleted to fight the beast when it invaded.

    Today, the day after Thanksgiving, I enjoyed time with my daughter, her friend and her friend’s dad.  We saw “Tangled” which was just delicious!  I enjoyed it immensely, and when I got home I happily greeted my computer, ready to roam around looking for good stuff, and ready to talk about it.

    All work and no play is no fun and not good for anyone.

    The perfect work is the one I’m glad to leave play to come home and do!

    If any of you, my readers, discover another gem, please tell me!  I can’t wait to post about it right here.

    I have always loved Thanksgiving.  It’s a welcome pause to stop and enjoy my family and my many blessings.

    Thanksgiving of 2007 was poignant, and each one after that is a benchmark.  I am another year older, and then there is Thanksgiving!  The focus is the turkey, the festivities, family, or perhaps loneliness and hardship, which good hearted people try especially to ease at this time of year.  What’s great about this whole hoopla is that we are reminded to give thanks, and our churches, workplaces, schools  and communities build gratitude into business as usual.

    What if gratitude IS business as usual?

    My whole perspective on this has changed considerably.  I am grateful that my children are little stinkers and made me so mad I wanted to tear my hair out this morning.  Why?  Because when Thanksgiving came three years ago, I was still weak and sick.

    When I was undergoing extremely aggressive treatments for an extremely aggressive cancer, my little pistol of a boy was exquisitely well behaved.  That was because he was scared out of his mind.  That he is an irascible 13 year old is simply beautiful, and I am so grateful for that!

    When I had my 36th birthday, my baby boy was five months old.  His godmommy had played with him earlier in the evening, and as I rocked him in my rocking chair, singing him a lullaby, he anointed me with all the churned contents of his little tummy.  I laughed, got us both to the bathtub and got us washed off, and reflected on what a gift I had just received for my birthday!  I had miscarried before this beautiful boy had come into the world, and the privilege of little baby barf was just perfect.

    Having faced the very real possibility of not having the privilege of getting old, I am grateful for my wrinkles, my occasional aches and pains, and that I get to be around children a lot.  I am grateful for the smell of rain.  I am grateful that I can write, that I can sing, that I can be taxi service for my 11 year old socialite daughter.

    All of us grumble.  It’s human, and it’s comfortable.  Gratitude has not always come naturally to me, but now it does.  Not a day goes by that I don’t give thanks for my life, and every beautiful thing in it.

    Every day on this earth is a gift.  None of us know when our time is up.  We could be called home at any moment.  The lingering memory of my cancer experience ensures that I am keenly aware of this.  I am grateful for the exalted and the mundane, the frustrating and the outrageous.  Sometimes the joy is so huge I feel that I can’t contain it, nor would I want to.

    I am grateful even for suffering.  I know what I can endure, and I have a glimpse of how much love my heart can hold.

    The Sufi Master Hazrat Inayat Khan said, “God breaks the heart again and again and again until it stays open.”

    Blessings to you and yours this Thanksgiving!

    As I am settling into the blogsphere, I am being initiated into unfamiliar territory, the slimy underbelly of comment spam.

    These spammers are so crafty!  They have their canned complimentary comments that they inundate me with, hoping that I will post their comments along with links to their sites.  The clue I get that they are spam are the following:

    They are highly complimentary without being specific at all.  “I could not have found the information you have provided anywhere else”  or “I really love your blog and am now suscribed, keep up the good work!”  Ah, the proud blogger is pleased until noticing that these exact comments are coming in from multiple sites.

    They indicate a problem which it is imperative that I solve, by publishing their comment.  “Your feed does not seem to be working, is it your site or my computer?”  Answer:  I have subscribed to my own feed on all three browsers and I know they work, thanks so much!

    Another approach is to try to get me riled up.  “Can I place some of your post on my website if I link back to your site?”  No, duh, it’s copyrighted.

    Or, my favorite:   “I have submitted several comments which have not appeared here, is there something wrong with your spam filters?”  Dude, I am the spam filter!

    Why is this relevant you may ask?  Well, actually, pondering why I am so annoyed made me think of how spam gets into my life, and why I hate it.

    Spam can be annoying communications that require a response, which are a waste of precious time that is better used for other things.  Do you have any of this in your life?  I do, although a lot less than I used to.  Spammers use any method they can think up to get your attention, so you’ll buy something, do something for them, or provide a way for them to get what they want.  Do know any people like that?

    What this reminds me of is the importance of valuing my time and energy, whether anybody else does or not.  Of course the irony of this is that the more I value my time and energy, the more others will value it.  The spam filters work better as they identify what is spam.

    My personal spam filters:

    Guilt and shame indentifiers.  If guilt and shame are present in the communication, I’m not playing.

    Resisting snap decisions.  When someone wants me to do something and they want it right now, I insist on taking time before deciding, and I tune into whether I really want to do what I am being asked to do, and why.

    Willpower!  Just because I would like to spend hours noodling around on the internet doesn’t mean it is the best use of my time.

    Supportive people in my life.  These people remind me what healthy, mutually respectful relationships feel like.  I gauge other interactions by this positive experience.

    Caring for Me time.  The more rested, balanced and centered I am, the better the decisions I make about anything in my life.  I make time for real sustenance, not spam.

    Real food is good for you, spam will make you fat and lethargic!

    Real food is friends, creativity, meaningful work, walks on the beach, children (insert your real food here).  A steady diet of real food, with minimal spam, keeps me strong, healthy, and loving life.

    Just say no to spam!

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    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.

     

    You can find all kinds of information on the web, and in your doctor’s office, about what chemicals you are being treated with and what they might do to you.

    Chemotherapy at first struck dread into me, thinking about what it would do to my body.  I wanted to do the things I had always done, to try to minimize the harm and keep my body in balance throughout, at least as much as I could.

    Wrong!

    Chemotherapy is a wild, crazy wave, and my job was to ride the crest of it until it broke.  Certainly I wanted to protect my healthy cells, but I wanted those chemicals to knock the %*@!! out of the cancer that was threatening my life.  It was a battle for control of my body.  It was a game of chicken between those purple ewoks and wookies and the angry little bald man.  My body was the stage for this drama.  Never mind balance, that didn’t apply here!

    I understood that uninterrupted treatment was the key to my survival.  By the fourth infusion, I finally understood that to stay on that wave I had to be as comfortable as possible.  Steroids with the infusion, ativan at night.  Pain killers, anti nausea medicine, laxatives, stool softeners, all my normal bodily functions had to be slapped around to keep me on that wave.  I had a vicious cancer, and one delayed treatment for whatever reason would give it a chance to bounce back.

    When I finally understood that this was the way of it, my strategy became very clear.  Stay on the crest of that wave, don’t fall off, support my body under the onslaught, and let every ounce of energy I had be harnessed to assist the treatment.

    The first big breakthrough was, pain and discomfort leads to stress, which weakens the body more.  By the fourth infusion I was taking all the meds they gave me, at the first hint that I might need them.  The more comfortable I was, the more my body could use the energy I had to fight the beast.

    I conserved my energy for the same reason.  I did things I loved, like walking, improv, reading, puttering outside.  Things that were an energy drain I declined, and people who were toxic to me I kept out of my space, sometimes with help from others.

    I said yes constantly, as I have discussed in another post.  When people wanted to pray, bring food, take care of my children, or tidy my home, I welcomed it all.  I also said no, just as consistently, to anything that would use my precious, limited energy for something that was not important to me.  Saying yes opened my heart.  Saying no taught me to trust myself.

    I used complementary therapies to minimize side effects, and to protect my healthy cells as much as I could.  I used imagery to protect my heart, to watch the tumors shrink, to build white blood cells and hemoglobin.  I never had to miss a treatment because of low blood counts.

    Dr. Brown told me to “eat what looks good to you” and I did that.  I also developed my once a day nutrition shake to make sure all the bases were covered.

    I took advantage of every resource.  My colleagues gave me massage weekly (I remain so grateful for this!), I received acupuncture, and I had a Healing Partner who provided Healing Touch for me every week for 6 months.

    I wanted to be sure I was really showing up for all this.  I wanted my whole being to know that I was engaged in my life, that I was passionate about it.  I took advantage of the counseling that was available at Healing with Hope.  I blogged like mad at Caringbridge, and celebrated life.  I painted my room purple.

    Do you have to do all this to weather the chemo storm?

    No, not at all.  Do it the way you do it.  Just keep three things in mind, if they seem good to you.

    1. Use all the medications they give you to be comfortable.  This is not the time to be stoic!  A comfortable body heals better and faster.

    2.  Do the things you really love with the energy you have.  That way you actually get some.

    3.  Let people help.  It blesses them just as much as it blesses you, if not even more.

    If this is you right now, know that my thoughts are with you, and you will get through it!

    We interrupt our regular blog program today for a moment of grief, as your chronicler just read a story that was painful and sweet beyond bearing.  As I have been emerging from my cave of recovery and joining the world I see stories that break my heart, and I know how blessed I am to be alive.

    I just read through a blog by and about a 37 year old mother,  who died of Inflammatory Breast Cancer in July of 2008, 14 months after she was diagnosed.

    I am so sad that I never met her.  I am so sorry for the ache remaining in the hearts of her six children, who still open cards written for them in the months before she left them.

    She was breastfeeding her youngest child when her symptoms began.  She waited too long.

    Damn, damn, damn.  It hurts. She was one of too many on a list on the blog I was reading.  I read their stories.  They were all mommies.  They all left children behind.

    Survival is bittersweet sometimes.

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    Thursday, April 12, 2007 10:35 AM, CDT

    Things are looking up! Today is better in general, because I got a really great sleep last night. Amazing how the busy little people dont encourage sleep. They don’t want to go to bed, but they’re ready to go bright and early. I slept in this morning, what a joy!

    Neulasta at 10:00, ONLY HALF, HOORAY! The neulasta is what causes the most misery to me. It’s a growth hormone, and it gives my bone marrow orders to crank out large quantities of white blood cells. The day I get the shot I feel all kinds of churning going on in there, and then my bones start to hurt. By the next day I feel as if I’m made of lead.

    This time I’m ready with everything I need to stay comfortable. I have been very resistant to taking all the medicine I am given for side effects, because I’m just not a medication person… I like to try to get things in balance first, and then try meds. I’ve had to turn that upside down and get proactive. I went through the list with Grace (Dr. Brown’s assistant) and I’ll take what I need in full, before I’m miserable.

    Maybe I’ll just sail through this one!

    It’s a beautiful day. I think I’ll play in the garden a little, after I have some on Donna’s delicious quiche for lunch. Donna, I was so motivated I ate two pieces last night! Thanks again, so much.

    Now there are some photos, courtesy of Steve mostly. I gave him my password and carte blanche to put what he likes on there. I haven’t deleted anything yet… thanks Steve!

    On to a quiet day, no need to push myself at all, just try and be comfortable and be grateful that my side effects can be managed. The less I resist it, the easier it is.

    That timely reminder came from my Uncle Dave, my father’s brother. My dad fought cancer and lost, many years ago, when he was 44. He had a vicious lymphoma that had metastasized by the time he was diagnosed. Dave has been in closer contact with me lately, in my court 100%. He’s a recoverd alcoholic with 20 years’ sobriety behind him, and quite a resource on putting one foot in front of the other.

    I told him that gratitude is what keeps me going, day after day. I asked him if this one of the things that kept him sober. He responded, yes indeed, and the other thing is acceptance. Good words. One can waste so much energy fighting what is! I am learning to conserve my energy to use to heal myself. It is frustrating to be weak and sick, but it’s what is right now. I accept it as neccessary to send my cancer away for good.

    Peace to all, and thanks. It’s going to be a decent day. A decent day during a round of chemo is a fabulous thing.

    Love, E

    Current time Postscript:

    This was in fact the easiest infusion for me, and the ones after were also easier in general although the cumulative effects of the chemotherapy got worse.  There’s a science to this!  More tomorrow….

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