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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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    Any of you boomers out there remember the song, “What a drag it is getting old”  by the Rolling Stones?

    Nowadays when I think of getting old I get so psyched about it!  I was young when I got cancer, truly.  I was only 45, and I felt as if I was in my prime.  I had made a lot of really great, important changes in my life and it felt like a renaissance of sorts.  I had plenty of stress to deal with, but I also had possibility.  I felt that I had the youth and stamina to start over after a nasty divorce.  I was re-creating myself.

    I didn’t know that I was just shedding some skin.  The real re-creation happened later.

    My youth ended in 2007, and I am now squarely settled into middle age.  Cancer treatment brought early menopause, and the loss of a breast cured me of equating my value with being “hot” as my boyfriend at the time thought I was.  This is not at all a bad thing, although it took some getting used to.

    The most important thing for me about getting old is that I get to do it!  My life could have ended in my youth and strength, and I have been blessed to have the opportunity to get older and complain about it.

    Sometimes I attribute things to lingering side effects of treatment that really belong in the “getting old” category, and vice versa.  I guess it doesn’t really matter.  I have to pay attention, I have to write things down, I have to get enough sleep.  It’s kind of nice, not being under pressure to be the firecracker that I was.  I made people tired just watching me!  I don’t do that anymore, although the 2nd and 3rd graders would probably call me a little crazy, and all they know about my age is that I’m older than Jeremy and Kari.  If I go home and take a nap after playing with them so be it, no one’s the wiser.   Naps are nice.  I like to take them.

    I was older when I had my children.  Tom was younger.  He’s 50, I’m 49, and we have five children between us.  In our home there are two children (mine, now ours) and every so often we get to see his eldest daughter, who we are very close to,  and our delicious grandbaby.  My kid have a nephew at 11 and 13!  I have another daughter to love and a beautiful grandson.

    Sometimes I complain about leftover cancer treatment stuff, like achy joints, fatigue, my brain that resembles a sieve, etc.  He tells me, “That happens to me too, honey.  We’re just getting old!”

    My dear friend Anne is 87 years old.  She has a sister in her 90′s, who is still going strong.  Anne walks with a cane (she calls it “my friend”) and she is four feet ten inches of pure piss’n'vinegar.  She wins bets against me because “I know and you don’t”!  She still does the things she loves to do.  She cooks a mean rack of lamb!  She is a wise lady and a blessing to me.  She is not done with her dear husband of 55 years, Glen.  She’s not done with the people in her life that she loves. Glen and I are thrilled that her early stage lung cancer can get a big zap one time, with new technology and precise measurements, and her cancer will be gone and her lung will be spared.

    Anne is just not done getting old!

    One thing I especially enjoy about getting old is my new habit of  going  more slowly, so I enjoy things more.  Once, in my wild youth, I rode a bicycle from Seattle Washington to San Diego, California.  I saw the entire amazing, beautiful Pacific Coast at about 10 miles an hour.

    It just doesn’t get better than that.

     

    As I reflected on the caringbridge entry I posted yesterday, I remember vividly making a very deliberate decision. When I was diagnosed, I sat myself down and told myself that I would make a practice of saying yes to whatever anyone wanted to give me during this undertaking. I would do so whether I thought I needed to or not.

    It seemed to me that I could use some practice allowing others to help me. I knew I wasn’t very good at it, and I knew I didn’t even have a clue what I needed.

    I just decided to say yes, just to get used to saying it.

    What happened was beyond amazing, it was exhilarating, it was heartbreaking, it was more deeply healing than I could ever have imagined. I had to open the doors of my heart as wide as they could open to keep saying yes. The more I stretched, the more blessed I felt, more tearful, more in awe, carried by a wild, rushing wave of grace.

    Now, three years and seven months since that wretched infusion, I smile and remember. I try to remember the feeling now, when my life has resumed, my kids are growing, my focus scattered most days. I almost feel nostalgia for the suffering, because, in Kahlil Gibran’s words, “the deeper that sorrow carves into your being, the more joy you can contain.”

    During that period of deep suffering I felt some of the most indescribable joy I have ever felt, joy that made me sing and cry at the same time, overwhelmed by the breeze on my cheek and the smell of a rose.

    To have a heart that open is unsustainable, and it is paradise.
    Saying yes still, today, helps me remember.

     

    Hello Out There! Are you a cancer survivor, or do you know a cancer survivor?
    I have a project I am obsessing about, and I really think it can help a lot of people. It’s the Victory Rooms project, and you can see that the page is already up there and ready to go!

    What I have in mind is virtual rooms full of survivors, one for each diagnosis.

    When I was going through treatment, I was the only person with Inflammatory Breast Cancer I knew. Now, because of our fabulous internet, I know quite a few. We’re a global community now, so a few people in one spot becomes a multitude when everyone is in one place, even in the cyberworld!

    What if, when I was first diagnosed and my mom was freaking out about statistics etc., we had been able to open a page, see photos or images representing survivors, and could just keep scrolling and scrolling and scrolling?

    Clearly this has to be a collective effort. Will you help?

    What I would love is:
    *your name, first only or full name, pseudonyms are ok too as long as relevant information is accurate
    *an image or photo, happy photos especially wonderful, an image if you don’t want to go public
    *Your birthdate, date of diagnosis, diagnosis particulars(ex: 2/07, Stage IIIC Inflammatory Breast Cancer, Her2+)
    *Your current status i.e. in remission, NED, metastatic (I met a woman recently who had been surviving well for 17 years
    with advanced metastatic BC)
    *anything else (feeling fine, ran a marathon, skipped town and joined the circus, ambassador for IBC awareness)whatever we
    might want to know that would give hope and bring a smile. By the way, those are real examples!

    If you would like to inhabit the pages of the Victory Rooms (oh please say yes!) kindly send all of the above to my personal email address, elizabethdanu@rocketmail.com. I am hoping to be inundated!

    We’re all in this together. Thanks for reading!

     

    I secured my first Thriver story today.  My wonderful postman, Douglas, has agreed to tell me his story so I can post it as my first Thriver Profile.  My plan is to present these profiles of real people beating cancer on a regular basis, around once every two weeks for awhile.  I have at least twenty people on my list!

    Douglas and I were talking today about what a morass the internet is when you’re newly diagnosed.  There is so much information, and a lot of it is very valuable.  Some of it is contradictory.  Some of it is outdated and scary.  I suspect a lot of us, like my friend Douglas, will flail around out there for a couple of weeks and then “just put it away”.

    I want to offer something different here.  For every cancer, there is somebody who has prevailed against it, and it is those people that cancer patients need to know about!  If you’ve just been diagnosed with colon cancer, Douglas’s story will give you hope.  If you’ve been diagnosed with Inflammatory Breast Cancer, read my story and take heart, because that is why I tell it.  If you are facing Ovarian Cancer, then you can be uplifted by my Aunt Joan’s story and my freind Avis’s story, if they will let me tell them.  I haven’t asked yet!  :)  These two amazing women have both conquered two separate cancer diagnoses.

    I know people who have faced and prevailed against colon cancer, throat cancer, Lymphoma, and Triple Negative Breast Cancer. I know people who were diagnosed at Stage Four and today are cancer free.  I also know people who are in remission and going about their lives, coexisting peaceably with their metastatic cancer. A friend of mine has a brother who has survived over 15 years after a belated diagnosis of Breast Cancer.  All of these people are on my list, and if they say yes, you will read their stories.

    As this site develops, I am getting a clearer and clearer idea of what I want it to be.  This is a place to find tools you can get your hands on with great strength, tools and inspiration to keep your chin up.  Sometimes keeping your chin up is the most important, and maybe the only thing you can really do today.  I’ve had plenty of days like that!

    You don’t have to have cancer in your present, future or history to welcome a boost of some kind.  I hope anyone who wants one can find it here.

    Second thing:  I need to adjust my tagline.  I don’t want just “resources for during and after cancer”.  What can I add to this line that expresses what I’m really doing here?

    Please, comment away, I need your input!

    P.S.  Are you seeing popups on this page?  I you are, I am going to kick some —.  I hate popups and I am getting them on my admin page.  Please let me know!

    P.P.S.  I just updated “my story” with photos.  It’s kind of a long story….

    Some days are just like that.

    Today I accompanied a dear friend and her husband to her first appointment with her oncologist.  They have been married for fifty five years.  She has Stage I lung cancer.

    It was a hard afternoon.  One of the rotten things that cancer patients have to accept is that the treatments are usually hard, and the good (#@&!!!) part about getting it when you’re young is that the treatments can be more bearable and less dangerous.

    I remember when I was going through it and I was told untold times, “stay positive!”

    Rubbish.  What does “stay positive” mean?  If it means smiling all the time and caring for everybody else, forget it.  What it means for me is to feel everything, make it as comfortable as I possibly can, and not fall prey to helplessness or hopelessness.  Stay positive for me means be real, and have people around that are totally ok with that.

    A friend of mine wore a “chemo whore” t-shirt.  Her husband wore one too!

    I wore my “cancer sucks” button on my bucket hat.

    Today it really sucks because it has intruded into my dear friend’s old age.  Other times it sucks because I see it affecting the young, and causing suffering.

    Other times I don’t give it a thought at all, all day, all week, all month.

    For that I am grateful today, even as I feel a bit sad.  I didn’t think I had it in me to post today, but as always, to write is a blessing to me.

    Thanks for reading.

     

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    I posted about an hour ago and the post appears to have been lost.  Yikes, what a lot of bugs!

    I am soliciting comments from folks about what you all would like to see here, in addition to what I plan to place here.  My hope is that many people will find resources for living well on this page, whether or not they are facing cancer.  Living well is a laudable task whether the lesson was learned the hard way or not!

    so….articles, book recommendations,  whatever else I can think of.  It’s all fair game.

    What I am wanting especially is for people who are feeling discouraged to find help and hope.

    Thanks for visiting!

     

    Julia Roberts said that, when she won an award.

    I think that being shamelessly filled with joy is a most honorable pursuit. This is my third attempt (third time is the charm, they say) to continue the blog that I started with Caringbridge. It is time. It has been over three years since I was diagnosed with Inflammatory Breast Cancer. At this time three years ago I was approaching the finish line for Elizabeth’s Ironwoman Marathon.

    Now it’s about Thrive Medicine, for anyone who can use it!

    Cancer is not the only tough as hell journey that folks go through. I have faced others. There are amazing resources available for the pursuit of deep satisfaction, spiritual growth, and putting the life we have to good purpose.

    So, this work begins and will continue to be a work in progress, to be fleshed out over time.

    Stay tuned!

     
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