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    I had visits with two women today who had to push for an accurate diagnosis.

    I drove into San Francisco to meet Valerie, who was diagnosed with IBC just a month before I was. Several doctors told her it was an abscess. She had numerous mammograms that showed nothing, and her breast was turning red and swollen before her eyes. She pushed until they knew what it was, and then she searched until she found someone who understood Inflammatory Breast Cancer. She told me that I was the first IBC survivor she had found who was diagnosed promptly and accurately. It was a full morning, and she gave me lots to think about. If you do a Google search on Valerie Fraser, you’ll see what a pioneer she is. She didn’t wait for someone else to give her the last word on her disease.

    As I become more and more connected into the cancer advocacy world it is becoming clear that far too many people are not getting diagnosed promptly, and the story I keep hearing is that people know something is wrong. They know, and their doctor tells them not to worry, to wait. I naively thought that this was most common with IBC, and that other cancers were diagnosed more quickly.

    After having breakfast with Valerie I headed back to San Mateo to teach my kids. Then it was to California Cancer Care to stand with my dear friend Anne for her second appointment with her oncologist. While I was waiting, I ran into another cancer traveler. I recognized her by her “fuzzy head” and we had a lively conversation. She had known something was wrong. She waited five months for a proper diagnosis! She wonders if her ovarian cancer would have been Stage 1 instead of Stage 2 if the doctors had taken her concerns seriously.

    I would love to think that this stuff doesn’t happen anymore, but it does.

    The problem is that none of us wants to believe we have cancer, so it can be the path of least resistance to not worry when deep down we know something is wrong.

    I really don’t know where I’m going with this rant. I’m expressing frustration. Can the “average Joe” know all about stuff the doctors are supposed to know? It is also true that doctors are human and can make mistakes, but I take issue with a doctor who decides what a problem is before eliminating every possibility.

    It still comes down to advocating for ourselves, knowing our bodies well, and taking charge of our medical care.

    And, scary as it is, squirmy as it makes people, I still tell every woman I meet.

    It’s been a long day.


    Wow, what a long strange trip it’s been!

    I started the Caringbridge site when I was just about halfway through my four months of chemotherapy.  I wish I had begun much sooner.  Blogging helped me through, but more importantly, I didn’t have to talk on the phone to wellwishers while I felt rotten, and I didn’t feel guilty about it because I knew they could check up on me.  On those days when I felt really abysmal, I would look through all the good words in my guestbook and feel better!  Since that first blog, I posted 408 entries totalling 136 pages.  Most of these were written before 2009.  I also had over 15,000 visitors.  Now that’s support!  You can find the link to Caringbridge to the right of the page.  It’s super easy, it’s free, and if you’re walking the tough path right now, it will help you in more ways than you know.

    So here’s a bit of history from the archives.  I’ll publish the good ones as I go through my old journals.  I’m getting ready to shut down that site, to make way for someone who really needs it.

    April 11, 2007

    Well folks, it’s full speed ahead!

    My white blood cell counts are so good that Tim (nurse) is going to ask Dr. Brown about cutting my neulasta shot dose, which will make this round easier for me. Huzzah, 4 of 4 down!

    Today is wierd Wednesday. I always feel strange on Day 1, kind of racy and disoriented, running hot and cold, just odd. But it’s not bad, just disorienting. By Friday I feel rotten, but this time maybe not so bad if the shot is not full strength.

    The infusion went fine. I was blue at first, annoyed that I have to deal with a cold on top of chemo, but then my ray of sunshine arrived (Flo, of course) bearing Jamba Juice, a sweet, buttery goodie and a big smile. That made things better! It got better still. I made a new friend, Avis, who came in for her infusion, took the chair next to mine and beamed at me the way I like to beam at people. She had a friend visit too, and the four of us passed the time in very good spirits. It even got a little bawdy…the topic of breast reconstruction set that off… where else do people have a good laugh about that stuff?

    Laughter gets me through… Thanks Avis and Company, thanks Terry (my impov teacher) who said, “It’s so hard when your body feels so bad, but your heart is so wide open!” So true, and she knows. She went through it four years ago. I feel this opening getting wider every day,opening into full flower like the intoxicating roses in my garden.  Thanks Steve, for making me laugh this morning, and putting the picture on my website. Thanks Cindy, for the yummy lentil soup I’ll be noshing on while I’m hunkered down these next few days. And thanks Terry, for the Trader Joe’s run today for the stuff I forgot!

    So now I settle in and take care of myself. My only job at this moment is to rest, heal, get well…thank you all for your prayers and good wishes. I truly could not do it without you!

    Love,

    Elizabeth

    Current time postscript:  neulasta was the stuff that you get to instruct your bones to make more white blood cells, so your counts don’t get low.  It made my bones hurt, a lot. I used guided imagery to tell my bones to produce white blood cells, so I ended up getting half the neulasta.  That fourth infusion was much easier.

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    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….

    One of the problems with our current, new age influenced culture is the idea that we create everything that happens to us.  If we believe that, we can un-create it, or so the wisdom goes.

    Even if you don’t necessarily believe that, a lot of folks do, and it can make it hard to be gentle on yourself.

    I have always been health concious, although I have not always done what I know to be best for myself.  I certainly pointed a finger at myself at first when I was diagnosed with Stage IIIC Inflammatory Breast Cancer.  If only I had been more consistent with exercise.  If only I had eaten more vegetables, if only I had left a stressful marriage years before, if only……

    I got over that and got committed to surviving.  I had some strong beliefs about what would work, and fortunately for me I survived.  Did I survive because of the acupuncture, the massage, the therapy, the healing touch, my health shakes, my self inquiry?  Or did I survive because Dr. Brown knew what sort of cell type I had and that she expected the cancer to respond to the big guns she fired at it?  Was my fantastic response to chemotherapy a result of my holistic East/West approach, was it luck, or the wonderful, compassionate and thorough team of doctors who treated me?  In any case I was blessed.  If I had a setback whose fault would it be?

    Nobody’s!  I repeat, nobody’s.

    I had a friend in my art and imagery support group who had faced an aggressive breast cancer.  She believed strongly in the approach she had taken.  When her cancer recurred, she was certain that she had failed.  It was hard to watch her beat herself up about it, and I was certain that her self flaggelation was not helping her body to stay strong.

    I believe very strongly that self love helps us to be strong.  Love strengthens and heals.  Whatever beast has intruded on your life, self blame will only give it power.  Self blame is a useless, counterproductive activity.  Now don’t blame yourself for indulging in self blame!  Enough already if you are doing that!

    Cancer happens.  It sucks.  Sometimes it happens again.  Cancer happening again does not mean the end.  I asked my oncologist what would happen if the cancer I beat once were to return.  Her response was that we would beat it again.  She’s a research specialist among other things, and in the cancer world new stuff is coming to light all the time.  It is true that people still die of cancer.  That does stink.  However, it is also true that more people don’t die than do on the whole.

    Setbacks can be anything.  They can be chemo effects that don’t go away as fast as you want them to.  A minor or major recurrence can be a setback.  I viewed my lymphedema, which surfaced nearly two years out, as a setback.  At first I was annoyed at myself for not being more careful.  I got over that.  It was just a setback, and now my lymphedema is very well controlled.  Hey, I’m still here!

    If you are reading this today, you are too, and that’s what matters.

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    I was in Sedona for the Christmas of 2008.  I declared myself AWOL because I was there alone, accountable to nobody.

    My children were with their dad for Christmas, my fiance was working a lot, and I knew that by the following Christmas my children would be with me and their new stepfather.  It was one of those sudden, undeniable urges that I’ve learned to listen to.  It was everything I wanted it to be and more!

    I blogged on my caringbridge site, I hiked, I sought out the famous energy vortexes, I gleefully took myself out to a nice dinner on Christmas eve.  I enjoyed my own company, with no one to entertain me but myself.

    The last time I had enjoyed such a long period of solitude was in 1988, when I rode my loaded bicycle down the Pacific Coast alone.  It was an amazing, transformative trip.  Solitude and self determination have a way of peeling away layers, revealing what really nurtures my spirit and what I want the most in my life.  It was the perfect thing to do to settle into the next stage of my healing, when I would no longer be receiving any chemicals at all, when I would try to move forward into my post cancer life with excitement and not fear.

    The first 2-3 years are the most critical after IBC.  What’s good and bad about it is that if it bites again, it tends to do it quickly.  My challenge was to not be distracted by the awareness of this, to have faith that I would continue to get stronger.  My mentor, Jean, said “the trick is to act as if you have control while realizing that you don’t.”.  Not easy certainly, but necessary.

    It has now been nearly four years since I was diagnosed in February of 2007.  I think I need to go AWOL again soon!

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    I always look twice when I see a woman with very short hair.  I wonder….

    When I was wearing my bucket hat with the “cancer sucks” button on it, I was occasionally approached by survivors who wanted to encourage me.  I appreciated that every time, especially the ones who had finished with treatments some time before who looked healthy and well.  When I’m in an environment where I know it’s ok, I do that as well and it is well received.

    When it seems so but I’m not sure, I don’t ask but I want to.  I want to know if she’s part of the been to planet cancer club.  I’m not sure why I want to know but I do.

    The cancer experience changed me irrevocably.  I would not have chosen such a method to create such deep change, but my life is very different and much better.  People sometimes ask me if I am glad it happened.  If I had a guarantee that it wouldn’t bite me again, my answer would be an unequivocal yes, even though I am missing an appendage and wear a compression sleeve on my left arm.

    It is so hard to explain how this is so to people who haven’t had to face it, and it’s an experience I wouldn’t wish on anybody.

    That handsome woman there with the chic, outrageous short hair might just be another member of the club I never wanted to join, and she might not…

    I guess I’ll never know.

    I just posted a blog about Inflammatory Breast Cancer.  Why?

    It’s a rare cancer, so it may not be relevant to a lot of people.  But for those who want to know, it is more than relevant, it is extremely important and unbelievably scary.  Why?

    Stinkin’ statistics!

    When you or someone you love is diagnosed with cancer, it is tempting to look for hope in statistics.  The problem with that is that many statistics are irrelevant by the time they’re published.  Sometimes you’ll find different statistics in different places.  If the statistics are on your side, maybe it helps to look at them and maybe not.

    When I was waiting for my cancer diagnosis, my mom was going crazy on the internet, looking up all kinds of breast cancer and trying to second-guess her fear.  What I had sounded alarmingly like IBC.  She told me she said to herself, “oh please God, not that one!”  Everything she read about it sounded terrifying, the statistics not the least.  She didn’t tell me any of it.  When Dr. Brown gave me the diagnosis of Stage Three Inflammatory Breast Cancer, her tone of voice and facial expression told me it was breast cancer, period.  She told me that I had an aggressive cancer and that we would treat it aggressively, and she was optimistic because she was confident that I could handle the treatments.

    I responded to her optimism with my own.  I was very blessed to have her and the other amazing docs on my team taking care of me.  I didn’t know that I had the bogeyman of breast cancers until later, after  my “phenomenal” response to chemotherapy.

    So, if you or anyone you know is facing cancer, forget about statistics if they aren’t great.  If they are, so much the better.  Each of us gets to choose where to direct our energy, and for me the pursuit of my own happiness and well being was the most important task on earth in 2007.

    I still try to remember that. When Mama’s happy, everybody is happy!

    Have you or someone you know been diagnosed with Inflammatory Breast Cancer?

    Maybe you have been researching, and have found some pretty scary stuff on the internet.  Perhaps you are more worried than you were when started looking, because those statistics are pretty alarming, and if you read “rare, aggressive and deadly” one more time you’re going to punch somebody. What good news could there possibly be?

    Actually, a lot.  Most importantly, that it is survivable, and those dire statistics are anywhere from two to five years old.  A lot has changed in the world of IBC, and Planet Cancer in general.  Many of the articles you may have seen online were written several years ago.  Sometimes the information presented is just plain inaccurate.

    Is IBC scary?  Yes.  It is rare, about one to five out of a hundred breast cancers.  It is aggressive, but so are the treatments used to fight it.  Deadly?  It can be, if it’s not diagnosed properly.  There’s no doubt it’s a nasty cancer, and it does kill. And, many times, it does not.  I am an Inflammatory Breast Cancer survivor, and I know of several others.  There are twenty year plus survivors out there.

    When survival rates enter the dialogue, five years is the usual measure.  This means that people who were treated even three years ago don’t factor into those figures.  When I was treated for IBC in 2007, huge strides had been made in treating my disease within the previous two years.

    First, let me clear up some misinformation I’ve found out there.  IBC is not always diagnosed at Stage 4.  It is never diagnosed at Stage 1 or 2, because the aggressive nature of the beast is that by the time you know it’s there it’s at Stage 3 or more.  That may sound scary, and it is.  But Stage 3 holds the possibility of emerging on the other side of it cancer free.  Stage 4 breast cancer isn’t even what it used to be.  People beat that too.  Those stories don’t get much press, unfortunately.  IBC is not “a new kind of breast cancer” either.  It has been around for decades, just missed a lot until some savvy doctors picked it up on the radar.

    People survive this disease more and more because a lot has been learned about it, new drugs are being developed, and the treatment protocol is somewhat different now than for other breast cancers.  It’s a tough protocol, but I rode that wave and you can too.  I’ll address ways to do that in another post soon.

    There are long term Stage 4 survivors around as well.  I have a friend I met in the “chemo salon” three years ago who had been surviving for two years when I met her.  She’s still there, three years later, getting her weekly herceptin (thank you Genentech!) and still having her life.

    So, the gloom and doom is old news.  The good news is that there are more and better treatments than ever before for facing down Inflammatory Breast Cancer, and we survivors are legion.

    Hang in there!

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