I have a rash on my chest. I think I remember feeling it there after a day of rehearsing, sometime last week. Dancing and sweating, dripping down my chest, noticing little bumps there later and not thinking much about it. It’s been a few days. More sweat today, three hours of dancing. Took a bath. [...]
I have a rash on my chest.
I think I remember feeling it there after a day of rehearsing, sometime last week. Dancing and sweating, dripping down my chest, noticing little bumps there later and not thinking much about it. It’s been a few days.
More sweat today, three hours of dancing. Took a bath. Rash looks kind of nasty and itches. Thinking….
Oh shit. This could be skin metastases.
I looked up some pictures. I looked closely. Yes, it could be that, but again it might not be. If it is, it’s early. Now that I’m aware of it, it seems itchier and redder.
My oncologist is away until Tuesday, my mom (my rock) is out of town. I called my husband in to look at the pictures and then look at my rash. He told me it looked like a sweat rash to him but that I should get it checked out right away.
So, a call to the oncology office tomorrow, and I will see someone else if not Dr. Canales. In the meantime, I’ve put Calendula lotion on it and I’m going to sleep tonight and hope for the best.
Fear of recurrence is a big deal for us IBC-ers (as we call ourselves I’ve noticed). It’s nearly four years out for me, so I have been holding on to the statistics in my favor, that say that most recurrences of IBC occur between the first 2-3 years. I read on one website that if nothing turns up by five years then it’s probable that we’re cured.
So, in addition to the yoga I do to minimize aches scaring me, and the neck stretches and acupressure I do to keep headaches from scaring me, if I’m lucky and this is just a sweat rash, I’ll add baby powder to my arsenal of things to keep other things from scaring me!
This first five years is so hard….
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 [...]
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!
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!
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.
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!
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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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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