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    I just posted at Everyday Health about what I learned that affected my everyday behavior.  Yes, it did!  Knowing that we are not as far along as I thought when it comes to preventing recurrence and metastasis scared me even more than I already was.

    We lost another in our blogging community.

    What to do….what I can to stay well, and what I can to end it.

    Here’s the post at Everyday Health.

    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….

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    Is yoga therapy?

    For me it is. It is good for me in a number of ways. It was good before I got sick, and it is good for me now whenever I take the time to do it. It was especially helpful after I had surgery. My doctor was delighted and amazed at how back I got my range of motion! At this time there is no difference in how I can move my left arm (the one affected by surgery) and the right. There is also very little difference in strength, although I have some lymphedema in the left arm. The lymphedema occurred for the first time when I got distracted and neglected my practice of yoga.

    Here is why it’s good practice:
    1. It is meditation, for folks who are challenged to meditate. The poses require concentration to do properly, and the breathing is very settling. I believe that yoga provides the same benefit for me as sitting for meditation. It is true also that the practice of hatha yoga is said to make the body comfortable for meditation. Either way it is a win/win.

    2. Yoga brings my full awareness into my body. I am more aware of all of me, my spirit inhabiting my body and everything going on it it. I am more likely to take care of issues before they start if I am doing yoga.

    3. Yoga is just plain good for me. It is one more expression of valuing myself. My balance, flexibility, and strength are improved when I do yoga regularly. The benefits are more than the sum of their parts!

    4. When I am doing yoga regularly, I suffer fewer odd aches and pains. When I feel rotten in general I get paranoid and off center, fearful of the beast coming back. This is something that survivors deal with all the time. The fewer odd aches and pains I am subject to, the less anxious I am! I think also that the awareness I have will make me notice sooner if there is really anything amiss.

    5. Yoga, practiced vigorously, is good for your heart. It qualifies for the type of exercise survivors need to decrease the likelihood that our cancer will recur.

    6. Yoga makes me sleep better. It also makes me require less sleep. Now that’s efficient!

    There are yoga centers everywhere, some good some not so good. It’s important to feel confident and at ease with the person you are learning from. There are also a lot of great videos out there. I mostly taught myself and then go to classes every so often to make sure I’m doing it right. I also love the yoga program on my Wiifit!

    For now I’m going to follow my own advice, and sign off so I can do some yoga before I go to bed!

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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.

    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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