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 [...]
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.
Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it. When I received my diagnosis, I called her up and told her “the [...]
Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it.
When I received my diagnosis, I called her up and told her “the scoop”. She did not in any way blow the whistle on herself, she did not in any way indicate how she felt about this news. She asked for Dr. Brown’s phone number so she could talk with her personally, and later called me to tell me that she felt “very reassured”.
I was perfectly happy to let my mom be the keeper of scary information. I figured she would tell me what I needed to know, and she did. I focused on managing the treatments and keeping my momentum, because I understood that this was what I had to do. I took care of myself, blogged, let people help me, and attached myself to fellow survivors and patients that inspired me.
I looked into IBC a little more after my surgery. I freaked out a bit then for a few weeks, and then decided that it was a waste of my precious time. My self care program continued to be my focus, and the weeks and months passed.
Now, nearly four years later, I am surfing the net for fellow survivors. I am finding women who were not so lucky as I was, women who waited too long to be diagnosed through no fault of their own, or whose cancer was just that much more of a cussed animal than mine was. I am aware that although I am past the highest risk period, there are no guarantees. I must use every day to good purpose. This is of course something I want to do anyway.
This dose of reality is something I can cope with now. Not so much before, when I just had to keep my eyes on the prize, the chance to see my two beautiful children grow up! Now that the worst of it is over, I am more than ready to focus on doing all I can so that others are spared. Getting the word out about IBC has become an obsession. Finding hope and sharing it has become my life’s work.
Sometimes emulating an ostrich is really not such a bad strategy!
Inflammatory Breast Cancer is very rare, and very aggressive. I am alive today because I went to the doctor right away for something that looked like nothing. The doctor who did my ultrasound knew about IBC, so I had a needle biopsy that day and from biopsy to chemotherapy was ten days. It wasn’t a minute too soon.
IBC is survivable, but timely (and that means FAST, folks) diagnosis and treatment is critical. If you or someone you care about has any of the following symptoms, get to your doctor and persist until you know exactly what it is. This information is directly from the IBC research site that I have posted in my links.
One or more of the following are Typical Symptoms of IBC:
- Swelling, usually sudden, sometimes a cup size in a few days
- Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
- Ridges and thickened areas of the skin
- Nipple retraction
- Nipple discharge, may or may not be bloody
- Breast is warm to the touch
- Breast pain (from a constant ache to stabbing pains)
- Change in color and texture of the areola
If you suddenly develop a lump or mass, have it checked immediately. We have one reported case where a 9x8x5cm lump developed in only three weeks.
Use caution when relying on the interpretations and reports of the mammogram or ultrasound! Inflammatory breast cancer usually grows in nests or sheets, rather than as a confined solid tumor. IBC may not be detected using either mammography or ultrasonography. Increased breast density compared to prior mammograms should be considered suspicious. Remember: You don’t have to have a lump to have breast cancer. (end of import from IBC site)
My own experience was that a quarter sized rash became a raging hot red breast with an inverted nipple, all in the two weeks it took to get from GP to ultrasound. When I had my scan it showed a sheet that was 11(!!!#&*) centimeters in diameter. I was lucky. Too many women are still losing the battle with IBC because no one shared this information with them.
Maybe talking about breasts with someone makes you uncomfortable. Sometimes women get uncomfortable when I share this information. Never mind. If she’s the one to five in a hundred breast cancers that is IBC, she will thank both of us for saving her life.
Please tell everyone you know!
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 [...]
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 [...]
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.
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 [...]
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!
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 [...]
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 [...]
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 [...]
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?
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!
About The LIberation of Persephone/ElizabethElizabeth Danu started this blog to provide a postive and useful resource for people facing cancer and thier loved ones. She is now a ten year survivor of Stage IIIC Inflammatory Breast cancer, enjoying her post-cancer life as a mom, blogger, speaker, wellness consultant and unquenchable optimist. She also sings and performs regularly with her a capella quartet, Curious Blend.
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DO NOT DUPLICATEAll text and art found on these pages belong to Elizabeth Danu, Copyright 2008 - 2014 unless otherwise noted. All rights reserved. Unauthorized use of any material on this site is strictly prohibited. For permission to use anything presented here, please contact me directly. Elizabeth Danu
Disclosure:My intention with this website is to provide an oasis of hope for those facing a fierce diagnosis. Any proceeds from this site go towards building this resource and for breast cancer research, particularly directed towards Deadline 2020 for the end of breast cancer. Blessings, Elizabeth
My bedside companion in 2007
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