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    The C word…

    Cancer, or cure? I have passed the five year mark, and my oncologist told me two years ago when she became my doc that she thought I was cured. “and, we’re keeping a close eye on you” she said.

    Technically, there is no cure for breast cancer and what I am is NED. I am in a remission that I hope will give me a lifetime, a normal lifetime if there is such a thing. I have already had the equivalent of the lifetimes of my friends Susan and Rachel. They didn’t make it to 40, but they did so much with their lives. To my new way of thinking, what I could have before me is a second lifetime.

    I am 50 years old, and I could live another 40-50 years if I am blessed and take care of this gift I have, my healthy, cancer-free body.

    There. I said it. Cancer-free. Have I jinxed myself? Do I dare say that what I write about is life after Inflammatory Breast Cancer?

    Do I believe in a kindly or cruel universe? Many ancient cultures believed that if you were too fortunate the gods would be jealous and put you in your place. I think I believe in a kindly Source who has held my hand all this time and has plans for me.

    Love or fear, which will it be?

    Today my life is richer than it ever has been. I live a designed life, that is becoming more and more the canvas that I paint on. I have the experience of facing cancer to thank for that, but truly cancer sucks. It does. I wouldn’t wish is on anyone.

    I don’t really get it. I’ll just continue painting.

     

    Back to the mat, this time to avoid having to take even half an Ambien!

    I’ve been reading the headlines with dread, the ones about sleeping pills causing death. A new study is all over the internet, terrifying millions of insomniacs, myself included. Fortunately I was able to stick with the subject long enough to investigate further, and this sleeping pill study everyone is upset about is seriously flawed. While the study authors controlled for some variables, they failed to establish that the link between sleeping pills and early death is actually causal. It could be that whatever caused the study participants to be insomniac in the first place was what predisposed them to dying prematurely.

    All the same, yoga is cheap, has no side effects, and best of all, helps me sleep. So yesterday I got started and last night I slept very well.

    I know that yoga is essential as well for me to manage my lymphedema. I am writing a lot these days, hence the somewhat sad neglect of this blog…been busy gearing up for the designed life I’ve been envisioning since I went through treatment five years ago now. That’s right, it’s been five years! I was diagnosed in February of 2007. I’m one of the lucky ones, and I don’t forget it.

    I’m almost afraid to call my blog “life after cancer” or something similar, for fear that I’ll jinx my good fortune. I know that’s silly. If the beast were to bite me again I could always call it something else. Right now, though, cancer is in the past. I am enjoying my work at the Children’s hospital, and some regular maintenance is keeping my arm from swelling up. I am starting to add more private clients, who just magically appeared after I said I was ready. I have been very busy writing for Yahoo, both on Voices and for Yahoo News. I actually get paid to be opinionated! I love that! Here are some links if you want to check it out:

    Complementary and Traditional Treatment Together to Beat Cancer
    What Your Insomnia May Be Costing You

    It’s the writing that makes my arm the most unhappy. All of it is really fun, and I have to really be committed to self care to make it doable. The yoga really helps.

    Oh yeah, there’s the mom job too. My offspring are now as tall as I am, and I am at the endless taxi driver stage.

    Life is grand.

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    I had forgotten how nice “no agenda” days are. Happy Presidents Day!

    I got up when I wanted to, and pretty much have done what I wanted. I had three teenage boys here, so I made them pancakes this morning, but not until I’d had my coffee. I’ve been puttering in “my studio”, which began as a shed that my husband built for me last year. I consider it my own little house, as well as my ongoing art project. Soon it will be an office.

    Nearly five years ago, when I was diagnosed with Inflammatory Breast Cancer, I automatically qualified for Disability. because I was either expected to die or to remain very sick for a long time. I didn’t die, and now, nearly five years later, aside from a slightly temperamental left arm, I’m not sick. My memory is even improving, dramatically in this last few months. My disability is ending, and I’m gearing up to go back to work in earnest. I’m telling myself that I can handle it, that I know how to manage myself so I don’t burn out. Days like today are good.

    I’ve been able to work part time and pace myself, as well as enjoy being a mom. I still have my rough days. All in all, I can’t complain. I’m fortunate that I have a skill that I can use the way it works for me.

    My days of full time massage therapy are over. An eight hour day would make my arm swell up like a tree trunk. I have been delighted to discover that I can tolerate working on kids really well, and I can do one or two of my good ol’ get in there and get it done massages in a day, if I elevate my arm afterwards. I’m so glad I still get to do that. It’s been 20 years doing this, and I love my work. I can do this and still do my mom thing. I’m lucky.

    I got my business license from the city, and starting in March I’m open for business. Woo-Hoo!

    Five years on Wednesday. Wow. Moving on with my life. Rock’n'roll.

     

    Last week was rough.

    We lost Susan Niebur on Monday, then on Tuesday Rachel Moro left us. It was a weepy week.

    And…..

    People who don’t like my writing on Yahoo occasionally can’t restrain themselves, and find me here to write their comments. I don’t think they even read my blog, so announcing that I spam these people doesn’t even help! Aaaaargh…

    I had a few things to say on Yahoo News about the Komen/Planned Parenthood mess. It was particularly irritating in the face of what’s really going on in the world of breast cancer. We haven’t won. Two of my friends died last week, and two others have lost their hard-won remissions. AND crazy right-wing nuts write to me on my website to tell me to shut up.

    NOT! I will not shut up. I will not desist, I will not be polite. I will not give up until I stop losing my friends to breast cancer.

     

    Susan, your passing brings such deep sorrow and so much gratitude for your life.

    I myself am speechless, so let others more articulate on the web tell the story.

    The world already feels more hollow without you in it, and a better place because you were here.

    http://www.care2.com/causes/susan-niebur-stargazer-fighter-and-friend.html

    toddler planet

    The Washington Post

    The WhyMommy Love Fest

    Dr. Susan Niebur

    Mothers with Cancer

    communities/the washington times

    I can say nothing to add to these stories, except that I was blessed to sit at “the blogger’s table” with her last may in D.C., and got to hug her. We knew each other through our blogs and our shared diagnosis. We traded comments and encouragement.

    She made an enormous difference in my life, and in the lives of so many, across so many paths: scientist, mother, IBC activist, advocate, friend. She was an extraordinary woman, taken from this world too soon, before she was even forty.

    Tonight I cry. I have made space for that this week. The world must stop for a time.

    Many of us in the cancer blogosphere are uneasily waiting.

    We haven’t heard a peep from Susan Neibur of Toddler Planet. She was diagnosed with Inflammatory Breast Cancer in 2007, and her road has been far more difficult than mine. It may be coming to an end. I can’t bear the thought. Her last post was before the hospice people came, on January 22. I hope against hope, waiting to hear that she’s rallied, she’s back in her chair with her little boys cozying up and making her laugh.

    Despite getting knocked down by recurrences over and over, Susan has been a scrapper in the world of advocacy, what a dear friend of mine would call a She-ro. She’s my hero, and if she leaves the planet I’ll call her my angel. She’s been an inspiration to me for as long as I’ve had the privilege to know her, which hasn’t been long enough. I’m profoundly grateful that I got to meet her face to face in D.C. last year, and actually hug her.

    Sending hugs and prayers Susan, waiting with hope to hear that you’re all right.

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    Well, the holiday hiatus is over. I went to one of my jobs yesterday, so I am gearing up for the routine.

    I worked on the break, but it was fun work, not scheduled work, and I could do it as I liked. I wrote some articles for Yahoo and had fun poking fun at politicians. I did a lot of reading, thinking, focusing.

    It was a tough time among my blogger friends. Sometimes when that happens I just drop out for awhile. That doesn’t help them and it doesn’t help me. What helps me is being engaged in making things better. As 2012 begins, I am again grateful that I am still healthy.

    What I was certain of when I emerged from cancer treatment in 2008 was that a life I loved would be the best medicine to get me well and keep me well. I am continuing to discover what that means exactly. Advocating for the cure for breast cancer is important, and I feel driven to do that. I also have realized lately that it isn’t enough. In a way I’ve lost track of the strategy I used to get well, the decision to really live a life that is joy to me in every way I can discover.

    Yesterday I went to work at the hospital for the first time this year. It was a difficult, sweet, rich, frustrating day. I can’t imagine doing anything else than what I did. I gave massage to four very sick children, and made a difference for them. They broke my heart and made it sing at the same time.

    A friend on an email list I follow asked us to state what we were creating in 2012. Here is what I’m creating:

    In 2012 I am doing more of what matters and less of what doesn’t.

    I am going to see my first e-book at work helping people.

    I am becoming a better and better writer.

    I am continuing my commitment to advocacy, and learning how to balance scrapping for progress with feeding my own soul and staying balanced. Donna, Susan and Jaydub, you are the winds I sail on!

    I will see my invention, which I’ve been sitting on for four years, come out of my brain and into the world. To see it and vote on it, go to quirky.com and search the Comfort Unibra. It costs nothing to join, and once you do you can vote. The inventions that get the most votes go to the next step. By the end of the year I want to see it in production. If it doesn’t make it this round, I’ll do what I need to until it does.

    I am posting on this website more often! When I was in treatment, I blogged to cope with what was happening to me. Life after cancer is a different set of challenges than life in cancer treatment. Blogging has to remain what I do for the love of it, not because I think I have to accomplish something. I’ve flailed around a bit in 2011 discovering this. My focus this year is on congruence, a life in which all of the parts are harmonious with the whole, and something new and wonderful is created.

    I am enjoying my family even more in 2012.

    Happy New Year!

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    Now the kids are putting the lights on the tree, with Christmas carols in the background. Cool!

    On Thursday night, we were at the ER with my son, who evidently could have had appendicitis. He had been throwing up for four days straight, and the docs were worried. When they told me to bring him in, I was worried too! It was a long night of IV fluids with anti-nausea meds, blood tests, poking and prodding, and preparing for a CT scan that fortunately was not needed. Phew! Anyway, the crisis has passed, and I am hoping that we can enter the season of holiday madness with some calm.

    I have lightened up my schedule a bit, as I said I would. I gave up one part time job that took me away from my children in the afternoons, so I feel easier going into the holiday season.

    My daughter just spilled sprinkles from the gingerbread house all over the floor. In text language, gtg!

    Life is good. Appreciating it especially since I’ve lightened my load, and superstitiously thinking that we’ve had enough excitement for a few months. Thinking tonight of my IBC sisters who are fighting, wishing them peace and sweet times with their wonderful families.

     

    So I’m a snuffly, achy mess, accomplishing very little at the moment and feeling guilty about it.

    Thanksgiving was lovely, and I’m back home now feeling like I should be doing a gazillion things but just wanting to be a snuffly bum and lay in bed, nursing my aches. I’ve been struggling with having stretched myself just a bit too thin, too many jobs, too many things going on at once. Feeling frustrated, conflicted about letting go of some of that overcommitment. After all, haven’t I learned better?

    My dear friend Susan’s post has brought my priorities back into sharp focus for me. She’s homebound, in pain, fighting metastatic cancer and having just enough juice for her beautiful family. Of course, that’s where the juice should be going!

    I always get a cold when I try to do too much. Type A-ness has snuck up on me these last couple of years, and I know better. I feel foolish now, squandering my healthy energy on what’s not strictly necessary, and not remembering what matters the most. I’m so fortunate it’s just a cold and a couple of bruised ribs. They’ll heal. None of us knows how many days we have. I want each day to be one that my children remember well, and that I feel good about.

    Can’t wait to get over these bumps and bruises and this cold, so I can get back to appreciating my health again and using it wisely. Next week will be a plate-clearing mission. Mine has become overstuffed.

     

    I totalled my car last Monday.

    The good news is that I’m fine, achy for a week, the only remnant now being some bruised ribs which will take longer but I’ll get there.

    Once I got past the shock of the realization that I’d been in an accident (airbag goo all over, as well as the remnants of my pumpkin spice latte) I had the happy thought that I was still alive, and that I’d seen worse.

    The fact that all of us (me, the driver and the passenger of the other car) got out of our vehicles and could reassure ourselves that everybody was ok makes it so much better than it could have been.

    I’ll miss my Eurovan. Her name was Alice and we loved her.

    Me? I’m guilty of a speeding brain. Bad habit. Gotta stop that.

     
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