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    Wow.  Hard to believe my last post was over a year ago!  This place must look like a ghost town.  Where does the time go?

    I have an interesting job these days, that I’ve been getting used to for the last six months.  It has created a very interesting perspective on my cancer experience!  What I do is screen massage therapists for an on-demand massage network.  I work for Soothe, interviewing therapists and accepting them into the network (or not).  The part that’s taking some getting used to is that the job includes receiving 30 minute practicals from candidates.

    Sure, it’s great to get massages every day I go to work.  It’s fabulous!  My office mates tease me about my tough job, lol.

    What I didn’t think about was how it would be explaining my contraindications at sometimes three times a day, up to ten times a week.

    Before I can proceed with having a therapist give me a massage, I have to tell her about my lymphedema, the tight fascia on my left side, and the neuropathy on my feet.  At first it felt a little weird.  Now I’m used to it. It takes the edge off after you say it enough times.

    I am 5’7″, have blue eyes, spend more time at a computer than I’m used to, and I have lymphedema.  Oh, and there’s no breast there on the left.  And the sky is blue.

    Technically, I still have breast cancer, and I’m in remission.  To me, I had breast cancer.  Once I had cancer that I could see and feel, I could watch it shrink, and after surgery I could joyfully believe it was gone.  NED, no evidence of disease, means that chances are good that it’s gone.  It’s been eight years now.  If I don’t think it’s gone, and that I had (past tense) inflammatory breast cancer, I could go crazy with worry and not live my life.

    I recently started downloading and editing the Caringbridge journals that I kept while I was going through it.  Soon I found myself drawn in, even though I’m just mostly downloading.  One night after getting lost in the journals, I became fixated on the risk of late recurrence and kept myself up all night noodling on the internet and worrying.

    It’s always there.  It’s probably good to just relegate it into another fact I recite to a massage therapist so I get a great massage.

    I feel a bit sheepish for staying away from here so long!  For every woman out there who’s just been diagnosed, I’m still here.  I’ll try to be here in my cyber room a little more often.

    Blessings,

    Elizabeth

     

    We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite.

    My last blog on Everyday Health generated comments from two survivors, one of 12 years, and one of five years. The five year survivor had story similar to what I posted yesterday. Still here, backwards treatment and all!

    We need to know you’re out there, survivors!

    Here’s the post over there at Everyday Health.

    I had a great day today. I gave a massage, did theater with some kids, and then went to the childrens hospital. Now my husband and my son are bugging me to get off the computer and go watch “V” with them. Life is good.

    Everybody deserved a life that makes her as happy as mine does me. Let’s make it happen by 2020.

    I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007.

    The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had it in 1995. She didn’t want me to take her picture or make a fuss. She was not into a fuss thanks, got stuff to do.

    What’s amazing about her story is that she’s alive, and the doctors who treated her botched it one way after another. She was diagnosed Stage IIIC IBC not before, but AFTER 2 botched surgeries where they took the wrong part of the breast! The third surgery yielded the proper diagnosis, MRM, only one breast, not bilateral because “we don’t do that”. Lots of dreadful chemo after (yes, after!) the surgery, which did not include herceptin of course because even though her cancer was Her2+ herceptin did not exist. Then, she did not get radiation either!

    Yikes! And there she is, cool as a cucumber, telling me about it!

    Go figure. Sometimes the best care in the world does not do what we want it to, sometimes the worst in the world doesn’t stop us from conquering. The happy medium is that these days, when women and doctors know more than they have ever before, and patients are full on players in their own story, more and more of us are going to beat it and get on with it, and decide for ourselves whether “making a fuss” is useful or not.

    So much for statistics, prognosis, or any other attempt to predict the outcome of anything!

    I guess what this reinforces for me is that always, always, anything is possible.

    I continue to make a big fuss, to help keep things moving forward in the right direction as much as I can, for all of those who can’t.

    My 15 year IBC survivor friend is quietly doing a whole world of good where she is. She is impacting the next generation, and I’m so glad that she’s still around, doing what she’s doing. She is someone I will run into frequently in my everyday life. Now every time I see her I have another reason to smile, and smile big.

    Here is the post that started the Army of Lego Princesses

    The Army of Strong, Brave Princess is growing. Go to Toddler Planet and follow the link to Annie’s blog, and believe that this world is full of good people!

    I ran into a friend today, one of my theater buddies. Our two daughters talked and played games on our cell phones while we had a good visit, a hard one too. She is terribly worried about a dear friend of hers, another mother fighting cancer. Felicia shared her ambition to involve her school in a massive fundraising effort for cancer research.

    We had stopped into a store earlier in the afternoon that is run by a breast cancer survivor. She’s got this cute little shop on B street in downtown San Mateo, dedicated to making a difference. You can find out more about her at www.livingpeacefullystore.com. I found out that Barb was a cancer survivor when I asked her about the “Cancer Sucks” bear she had on display. I used to wear a badge on my bucket hat that said the same thing! It made me smile.

    Felly and I got matching little heart necklaces with a peace sign inside. Hers is pink, mine is purple. After we visited the store, we got some frozen yogurt and she told me what she wants to do. She is envisioning car washes, bake sales, maybe a musical theater production, all to raise money for cancer research. I think she was inspired because the lady who runs the store has a son in Felicia’s P.E. class.

    How many of our children have been touched? How many want to do something, and don’t know who the others are in their community that also want to do something? I’m looking forward to seeing what happens.

    It’s a mighty good world, with good folks in it. Yes, there is all kinds of ugliness, violence, want, disease. And, joining together to do something about these things is such a deep satisfaction, such exhilaration, such hope. Today instead of being paranoid about my aches and pains (I have a spot at the front of my right hip that is bothering me, stretching like a nut so I can make it go away and stop worrying) I can focus on what I am able to do, and remind myself to take care of myself so I can keep doing it.

    Susan, what you inspire in others inspires me. The disease you face stinks and what your courage in the face of it draws from people is simply amazing and wonderful. Now that little lego princess is on my desk too, every time I turn on my computer.

    Rock on Princess!

    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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    Someone on my IBC support list brought this amazing story to our attention.  Megan Waldbridge Nelson had seen an e-mail about IBC, which had been circulating on the internet.  It had been years ago, but she remembered, and advocated for herself.  The knowledge that she had in her mental rolodex, and her decision to act on that knowledge was lifesaving.

    This morning I spoke about IBC to a group of nursing students at my local coffee shop.  I saw a woman in scrubs, wearing a pink ribbon.  I saw my opportunity!  I thanked her for wearing the ribbon, and asked her if she had ever heard of Inflammatory Breast Cancer.  She had not, and her classmates had not either, although they had already learned about breast cancer.

    Since I became part of the internet IBC community, it is clear to me that a lot of us are committed to getting the word out, but still the majority of women I speak with have no idea about Inflammatory Breast Cancer.  Nursing students didn’t even know!  Every one of us who can speak about it are needed voices.  Megan is my hero today because she used the opportunity to make her story public, so other women can save their own lives as she has done.

    You can see her story by clicking on the link:

    http://www.9news.com/rss/article.aspx?storyid=168708

    I’m having a hard time getting the link to work!  If you are too, just go to www.9news.com and search Megan Waldman.

    For women facing IBC, the support list is a hugely important and valuable resource:

    http://www.ibcsupport.org/

    for more information and the most current research on IBC:

    ibcresearch.org

    I am alive today because of research (which gave us herceptin, relatively new when I was diagnosed), doctors who were knowledgeable about IBC, and because I took care of myself.  More and more women are speaking up to make sure that women and men know to take care of themselves.  This is not just true of IBC, but of other cancers as well.  The work is never done, but we make progress, and keep on keeping on.

    Thanks Megan.  We’ll be watching you!

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    Today one breast cancer death is in the spotlight.  One high profile woman who advocated for breast cancer awareness, and fought for health care reform, has died before her time.

    Elizabeth Edwards was aware that she had resources that many women do not have.  She was deeply concerned for women who are uninsured, poor and under served by our health care system.  Each one of us who is currently dealing with breast cancer or who has had it, can feel the blow of one more who has left before it was time.

    Today I am mindful of the ones who I have come to love that I never met.  Today I mourn for Andrea, Jo, Susan, Modmom, J, Julia, Katie, Jen, Lisa, Manda, Amber, Renee, Sue, RivkA, others whose names I do not know and for Marianne, who I knew personally.  All of these women left before they were ready.  They were pathfinders.  Their journeys, and their passing, never leaves my awareness as so many of us work to get the word out about screening, diagnosis, and the research that will create a future without breast cancer.

    I am in appreciating of the women who are still here, doing what they can, working to help women get diagnosed, cope with treatment, and survive.  I am grateful to my friend Valerie, an IBC survivor who continues to push for more and better research about IBC.  Vicki Tashman, founder of PinkLink, is providing resources for a healthy survivorship and support for the newly diagnosed. There are many others.  I stumble on them during my meanderings on the webs.  They all inspire me.

    My fellow IBC bloggers, many of whom are battling metastatic disease, are relentlessly getting the word out, raising awareness, and coping with cancer with amazing grace and courage.

    I am sorrowful today, and I am committed.  I am part of the Army of Women, literally and figuratively.  Please join us if you have not.  I can believe in a world where my daughter doesn’t have to be a warrior, and needn’t grieve for the wounded and the fallen.

    Goodbye, Elizabeth.  We will miss you.

    Yesterday, I had the loveliest afternoon and evening.  I went and saw the Bodyworlds exhibit  with my husband, my dear friend Susan, and new friend Kit.  It was nothing less than amazing.  Bodyworlds is an amazing display of the human body in movement, health and also in disease.  The technology is plasticized  human cadavers donated to science.  They are beautifully and reverently displayed, and utterly fascinating.  Interspersed with the specimens were elegant displays of relevant information.  Susan and I are both massage therapists, so we were like little kids in a store full of chocolate, greeting the bones, muscles and nerves like old friends.

    After the exhibit, we came home and watched a fascinating movie called “The Living Matrix”, about what they called “Informational Medicine”.  The theory is that illness is scrambled information, and that by restoring the natural blueprint to the bodymind, health can be restored.  It’s a complex topic too big to go into here, but the nugget that got me thinking was the discussion about the Placebo Effect.  One doctor pointed out, if the placebo effect is documented to aid healing up to 30% of the time, why aren’t we using it?

    In my case, I don’t think that belief itself changed anything about my disease.  I think instead that the focus of my belief sent powerful messages to my body, which engaged my own healing response.  I am deeply grateful that my doctors, and my mom, used their own Informational Medicine.

    For whatever reason, I believed with all my heart that I would survive.  I don’t know exactly why I did.  The story I made up served me.  I believed for myself that if I got the lesson, the teacher would leave and not return.  I believed that what I was being asked to do was learn to really love myself, to open my own heart to me.  I asked for any karma I had coming to make it’s way to me right then, in February of 2007.  I decided to receive all that anyone wanted to give me.  I used every tool I knew of to heal my whole life.  This was and is my belief.  I believe that staying on this path will keep me well.

    What I did not know was that this story I was using to empower myself was fragile indeed.  Any doctor could have deflated it easily, with one thoughtless comment or practical observation.  The facts (the statistics) were not in my favor, the truth of which I was blissfully unaware.  How did this happen?

    It started with Dr. Borofsky.  She did not tell me what she thought I had.  She said that it was “very possibly” a cancer, and that we would know more when I received my full diagnosis.  I was scared out of my mind.  I asked her tearfully, “am I going to die?”  Now there’s a silly, loaded question!  Even bolder was her answer.

    “No.  No you’re not”.  She said it with a firm shake of her head.  I believed her.  If she had lied, oh well, I wouldn’t be around to scold her for it!  I believed her implicitly.  I asked her about it later, and she laughed.  She said that what she meant was,

    “no, not now, not on my watch!”  It was good enough for me.

    When Dr. Brown told me my diagnosis, she did not express dismay when she said the words “Stage IIIC Inflammatory Breast Cancer”.  It rolled off her lips like “it’s raining today, shall we eat inside?”  When I asked for a prognosis, she said, “we’re optimistic”.  That’s all I could get out of her.

    Dr. Metkus wouldn’t give me statistics either.  She said, “why do you want statistics?  What good would they be?  No one has ever studied Elizabeth Danu before.”  My friend Flo told me that she had mentioned me to Dr. Metkus, and that the doctor had observed, “she’s a survivor”.

    My mom totally censored the information she sent my way.  The 25-50% survival rate for Inflammatory Breast Cancer never reached my ears.  Instead, she sent me snippets of things that gave hope, and posts from long term survivors on the IBC support list.

    My doctors, and the people who love me, conspired to keep me in the dark about what might frighten me, and they fed me what gave me strength and courage.

    Never worry about giving someone “false hope”.  No hope is false!  There are exceptions to every statistical curve.  This is why I read and re-read “Remarkable Recovery”.  It was full of stories about people who disproved the statistics, and did what they knew would heal them.  A basic principle that I learned years ago is, it’s true if it works!

    My paradigm worked for me, and I am so grateful that the healers in my life supported my belief.  This is the Placebo effect at work, deliberately.

    This site is about Informational Medicine Power.  Take what gives you strength, makes you laugh, brings hope, or whatever else you want, and disregard the rest.  Reality is overrated!

    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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    The day of my cancer immersion (Monday) I was talking with my new friend Norine, and she expressed frustration that she was not feeling better faster. She acknowledged that she felt “a bit blue”. I understand this so well!

    After the heroics, there is the plodding back into life as usual, except that usual is not what it was before. The hordes of supporters get back to thier own lives, and the well-wishers relax a bit, seeing that you’ve successfully weathered the storm. It is not uncommon for the blues to set in, as we adjust to our post cancer lives.

    So why is this up for me right now? Maybe because the process continues to be cyclical. There’s the first bounce back, after treatment is over. Then, settling in to survivorship. After settling into that, I now find myself back into the world of cancer awareness, advocacy, research, other people’s stories, and suddenly the thing I hardly thought about at all is constantly on my mind. Concerning myself with educating people about IBC is bringing me back to how I was snatched from the lion’s mouth myself, thanks to a truly excellent team of doctors who had IBC on thier radar. The last few days I have been grappling with the fear of recurrence, as my brain is steeped in the statistics I so successfully ignored when I was being treated. Suddenly I’m worried about blood tests maybe I should be getting that I’m not. Every little ache and pain takes on huge significance. As I write this, I am remembering my last freak out, which was certainly more warranted, because I was in the riskiest time. Dr. Brown practically had to give me a shake, as she said with a chuckle and some exasperation, “Relax! All your doctors are very happy with your test results!” My pathological report was good, my scans were clear, and I was gripped with terror. IBC is known to bite back, and to do it quickly.

    So why the freak out now, nearly four years later?

    The better my life gets, the more there is to lose. Silly perhaps, but there it is. Many hard knocks in the past have taught me that just when things get good, something bad happens. When I was diagnosed, I decided deep in my bones that this was the last time I was seriously getting hit hard upside the head. This was Persephone’s LAST trip to the underworld dammit, I’m coming out now and staying! At the time I was diagnosed, I was blessed with a very deep faith that all would be well. I didn’t know where that came from. I am convinced that I was simply carried by grace. I told myself that if I got the lesson the teacher would not have to reappear. I don’t know if that was strictly true in the logical sense, but my heart and soul believed it, and I think my body listened. As a result of that decision, my life today is vastly different from what it was. I do things that matter to me. I let my heart direct where I spend my time. I have made the decision not to just leave IBC in the past and forget about it, but to have compassion on those who have yet to be diagnosed, and do my part to see that as many as can be will be diagnosed in time to have a real chance at survival.

    So maybe, because my life is so beautiful to me now, I distrust the changes that I have made, and have backslid into fear. My life used to run on fear. My home was full of fear, my past was full of fear, I was afraid for my children, afraid for me. Fear is an old habit that dies hard. To get well I chose love instead.

    I have to continue to remember what a powerful choice that was. I need to keep choosing it every day, because this day is all any of us have really.

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