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.
Turning 50 was rather cool.
I was diagnosed at 45, so getting to 50 was a double milestone. I am one month away from that magic number, five years from diagnosis.
The truth is that breast cancer can and does recur after five years. It just doesn’t happen as often. I also read recently that late recurrences have a better prognosis than earlier ones. It’s all good. After having a bunch of tests done and coming back normal, I am breathing a great sigh of satisfaction and relief. I didn’t really understand how much I had been putting on hold.
One thing I am amused by is that suddenly I am not in denial about being in menopause. It was as if some tiny part of my mind thought that maybe my period would come back! Now that I am at the age when my mom had hers, I can go right ahead and have a midlife crisis. I’m having fun with mine.
First, I went with my daughter to get her contact lenses and decided that it was time for me as well. So, last Thursday I saw my own eyes right up close for the first time in twenty years. Cool! Right along with that I got to see the wrinkles and dark circles that my funky blue eyeglass frames were hiding. Hmmmm. Then there were the gray hairs…
Yesterday I went to Lady Foot Locker and bought myself a really good pair of running shoes. I was feeling nostalgic for the good ol’ days, when I lived in Seattle and ran Greenlake regularly. I have very fond memories of runner’s high. I surprised the sales guy by asking him, “which shoe would you put your mom in?” It was a great question and I got a clear answer, so I went out and ran in them this morning and it felt great.
If 50 is the new 30 (really?) then it’s downhill from here. One advantage to having so many tests and scans is that I have seen with my own eyes that I have wear and tear on my hips and low back. My doctor says that it would be strange not to have these things at my age.
So I’m an old fart. That’s ok. Beats the alternative, it’s true. All the same, I’d like to slow it down a wee bit.
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 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!
Here’s some bad poetry to celebrate the pause after the madness:
‘Tis the day after Christmas, and now I can rest.
The hoopla is over, and I’ve done my best.
‘Twas joyful and happy, my family’s content
Now that it’s over, myself, I am spent!
The world, it went on while the holidays roared
my children concerned with the stuff they have scored.
The season has hijacked commitments and causes.
I now am glad for the end of these pauses.
My blogs are neglected, my house is a mess
farewell has been said to the family and guests.
My friends fighting cancer are breaking my heart.
2012 a new year of advocacy will start.
Soon another year comes, a new chance to give
every sweet day a new chance to live.
Soon five years will have passed since they named my disease,
now I move forward with e’er greater ease.
A new year is coming, may this be the best!
For you and for yours, may we all get some rest!
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.
I honestly love happy racket.
Right now my heart-daughter and grandbaby are asleep downstairs, my daughter is on my bed harassing me instead of making the coffee I want, but she will eventually…
My son’s best friend, my extra kid, poked his rascally head in my door this morning to wish me happy birthday. We’re all tired and silly, because last night was opening night of “Annie Warbucks”. Tom plays the stuffy butler, Miss Peach a rascally orphan, HD (heart daughter) helped with the stage crew, and the baby (“Bubbeeee…”)kept me company as I herded children (as a chaperone) backstage. It was a little odd not being on the stage, but I have enjoyed the long quiet afternoons when Tom and Miss Peach were at rehearsal. Tom and Peach are in the Big Apple cast, so they have two more shows to shine in their big parts.
Today I am taking the day off, because it has always been my habit on my birthday to take some time for reflection. The last four birthdays this has been especially so. I am always so overwhelmed with gratitude for another year. I am keenly aware of how fortunate I am. This awareness is bittersweet today, because this last week I lost another IBC blogsister, Ashley Warrior Mom. Her IBC battle lasted two years. Two other blogsisters are fighting like hell. I know that each day I get to spend here on this delicious planet is a gift, and each year I get to have a birthday I think about how to make the most of the year coming.
One of the little things that makes me happy is that I have never had a bald birthday. I know that may sound like a little thing, but somehow it makes me feel like I got away with something. For my 45th birthday I had hair, and was blissfully ignorant of the thief that had snuck into my house and was preparing to wreak havoc. By the time my 46th birthday rolled around, my hair was back, thick and wavy, I was feeling much better, the herceptin was tolerable and I was NED. I had hope, and I could see a future. I guess each birthday that passes now is anchored in to that triumphant time.
What’s ahead? Enjoying my children, more time at Lucille Packard, more writing, perhaps more theater (when another villain part comes up for a soprano I’m all over it), gratitude, more advocacy, scrapping for the end of breast cancer by 2020. My beautiful daughter is twelve. I want her and her beautiful friends to grow up in a world without the fear of breast cancer.
Oooh, Bubbee is up. Time to be Grandmama…
This last weekend was amazing, not just for what I learned but who I learned it with. There is really so much to be done to change public policy and perception about breast cancer!
Like so many newly diagnosed, when I first learned I had breast cancer I thought that all I had to do was take a deep breath, face my fear and get on with it. I had been affected by awareness blitz of the last decade that has inadvertently convinced a generation of women that mammograms and education had gotten the upper hand over breast cancer. To be told at diagnosis that my disease was serious (and read between the lines that it could very well kill me) was not what I expected.
This weekend I learned why breast cancer is such a ferocious, still underestimated foe. I learned how breast cancer outsmarts treatment, and what is being done to outsmart breast cancer. I am heartened by how much we have learned, and frustrated by how far we still have to go.
The biggest takeaway of all is that the divisions that exist between breast cancer survivors and advocates really don’t need to be there and are counterproductive. Breast cancer is a sneaky beast. It puts out little migrating cells very early in the process, which means even early stages of disease are at risk for recurrence. In my mind, it doesn’t matter if we are NED, metastatic, or haven been treated for “just” DCIS. It’s all breast cancer, and regardless of the diagnosis we join the prevalence statistics. That’s right. In evaluating the prevalence of disease in the U.S., I count as someone with breast cancer, even though at the moment I am NED. “Cure” is actually a misnomer when it comes to us. No one knows if we’re really cured once we’ve been diagnosed.
So what about Deadline 2020? What does “cure” mean?
It means that:
1. We stop being diagnosed, as in we prevent it from ever happening in the first place.
2. Women whose cancer has metastasized have weapons in the arsenal that will not only prolong their lives, but eradicate their disease for good and go on to live normal lives.
We are a long, long way from these. I believe that if we focus, we can apply this focus in the same way other major milestones have been achieved, we will achieve this one, but not without a lot of people working together.
My buddy Donna (what a thrill it was to finally meet my cyberbuddy!) and I were noticing that it was an extraordinary sort of woman who attends these things, who wants to be an advocate. Are all people who get this stinky disease amazing people? Is the disease that smart?
No. It is that some of us respond by wanting to do something about it. The rabble rousers, action takers, loudmouths, women who have had enough…it’s the “uppity” ones who come to join the fight for the deadline. We are the NED, the Metastatic, the DCIS, the supporters, the educators, the researchers, all represented in that micro community this weekend. We can do it if we work together.
Contrary to what we may think divides us, we are all in the same boat. We have all been affected by breast cancer and we’ve all had enough.
The day after tomorrow I will get on board a train and go to Seattle for another advocacy training. While the pink ribbon campaign plods along (the month is getting old, after all) and the hoopla continues, women put one foot in front of the other and plod forward, in advocacy or in treatment.
The blogosphere has been busy lately. Fallen sisters, survivors speaking out against pinkwashing, daily breast cancer facts, metastatic breast cancer awareness day. Today two amazing warrior women are telling it like it is.
Susan Nibur is a scientist, a mom, an advocate, an activist, and a simply wonderful human being. While she struggles with metastatic cancer, she has taken the time and energy to write a post about the realities of her life with metastatic IBC. Her in-depth, honest, complete account is a labor of love. Please read her story if you want to get past the pretty pink and know what we’re really up against.
Likewise my other friend “down under”, who today wrote a post about facing death. This woman continues her commitment to getting her university degree while coping with treatment side effects, and somehow having the presence to pursue her studies while keeping a “my funeral” file. Read her story and get a good look at real strength.
These women, and other amazing women like them, occupy my cyberworld and lift me when I want to whine. Today I am refreshed from my backpacking trip and have immediately managed to overcommit myself. I have writing deadlines, packing, momming, and a bizillion other concerns before I leave for Seattle on Wednesday, and I could easily just spin out on adrenaline. I don’t want to do that. I want to be mindful, aware every day of how precious each one I have is. I am so, so lucky that I don’t have to live my life under the burden of toxic treatment to keep me alive. I am so fortunate to have the stamina to overcommit myself (sometimes) and get away with it.
What I can do now is go learn some more, and put that knowledge to good use in every way I can. I also continue to write what I know for whoever needs it. I just published another article for getting through chemotherapy, this one specific to
managing the effects of taxol. My IBC article has made it’s way past Associated Content into Yahoo News, and that makes me happy.
Susan and J, your stories are where my commitment comes from.
This last weekend, we had beautiful weather until it was time to leave. The sound of rainfall on our tents got us up and moving. We packed in a fine mist, and then as we prepared to leave we were gifted with the most beautiful rainbow. I have it on my desktop now to remind me to keep on keeping on, and believe that breast cancer can end by 2020.
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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This blog is a labor of love, and it has to fit into the nooks and crannies of my crazy, busy, wonderful life.
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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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