• Home
  • inflammatory breast cancer
    Currently viewing the tag: "inflammatory breast cancer"

    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!

    Tagged with:
     

    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.

    Is it yours?  Is it your family’s?  Does it belong to your kids, your job, your partner, is it hostage to dreams you have tucked away for the future until you could ransom them?  Do you value it?  Why?

    When I was diagnosed with IBC in 2007, my life had become unbearably stressful.  I was overwhelmed by the fallout of a horrible divorce, I was struggling to make ends meet, my children were hurting, and I came perilously close to losing my job which had been a labor of love for many years.  When the doctor who did my ultrasound and biopsy told me “this is very possibly a cancer”, my first thought was

    Oh no.  My poor children.  No.  This can’t be happening.

    I knew I had to survive for them.  Then I realized I had to survive for me.

    Four days later, I was at a restaurant waiting for my breakfast, passing time while my car was being serviced.  I got the call from Dr. Borofsky.  Yes, the mass in my breast and the lumps under my left arm were cancer.  I was sitting next to a couple having breakfast, and I tried not to call attention to myself.  After the call, my breakfast arrived.  I tried to eat it, but it tasted like sawdust.  As I was struggling with my breakfast, the couple got up to leave.

    The woman approached me and said,

    “Honey, you’re gonna be all right.”  I was speechless.  While I recovered, she continued.  I remember her face ever so clearly.  Big blue eyes boring into mine, red hair, her expression deadly earnest.

    “Do you have children?”  I nodded tearfully.

    “Well, this is their time to learn that you come first.  Nothing, and I mean nothing is more important than taking care of you right now.  Do you understand?”  by this time I was really crying.  She went on, “and when you get scared, you just feel around in you left back pocket, and I’ll be there, praying for you.”   I blubbered, “promise?”  and she did.  She meant it.  To this day I don’t know that woman’s name.  I never saw her again.  I will always be grateful to her.

    Later, my struggling seven year old daughter would tell me “ever since you got cancer, all you care about is yourself!”  That was hard, but self care for me was not negotiable.  If I gave my life away, how was I to love my life enough to tell my body to hold fast?  Whose life was I fighting for, if not for mine?

    It was tough at first.  I had to learn to pay attention to subtle signals from my heart and spirit about what I wanted to experience, what I wanted to do with the windows of strength and focus that I had.  Before my surgery, I painted my room purple so I would be enveloped in my favorite color while I recovered.  I rediscovered painting after decades of not even picking up a brush.  I made my Bay Area stage debut as the White Witch in “Narnia”.  I blogged on Caringbridge.  I accepted every offer of help I received, as a heart opening opportunity.  I went to my comedy improv class every Tuesday and laughed like a lunatic.  I made sure that even if I felt like crap, I saved some juice to sing my children their lullabies.

    Happiness and satisfaction made my body hum.  I chugged along through chemotherapy uneventfully without interruption, which was the goal.  Creating a life that fed my soul kept me engaged in doing everything I needed to do to get well.  Self care was not a task, it was love.  It was love for myself, love for the people who cared about me, love for my children, love for this beautiful world which I am still blessed to inhabit.

    Today my life looks very different.  I had been a professional full time massage therapist and teacher for nearly twenty years, and now I had a moderately gimpy left arm and not so much stamina.  So other things, things I loved, came to fill in the gap.  I provide massage for very ill pediatric inpatients at a children’s hospital, and I teach theater arts to children in an elementary school.   The art that began to emerge after my year of treatments was shown locally, and people actually bought prints!  I discovered through Caringbridge (which I highly recommend) that I loved blogging, so here I am blogging again!

    Having discovered who I’ve been hiding all these years, I brought her to light and my husband of just over a year found me.

    So, with all this ”me” focus, what happens to my kids?

    I laugh with them.  I nurture their dreams, and they get to see that I am nurturing mine.  I spend more time with them.  I do shows with my daughter.  My son just popped his head into my room and said something ridiculous, cracked me up, then left without a word.  I take them and their horde of friends to the beach.  When I have been taking care of myself, I have the patience of Job, which is quite an asset with a tween girl and a teenage boy.  Most of all I am still here, with them.

    That red headed woman was an angel.

    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!

    Tagged with:
     
    Content Protected Using Blog Protector Plugin By: Make Money.