Today I had to rant.
I have a cold, which is no fun. Whine whine. Then I checked my e-mail and got a little overwhelmed by the IBC world, and quite pissed off. So I ranted over there at Everyday Health! I hope the editors don’t get upset at me.
And what’s cool? Tom, Felicia and I are going to be in the Wiz together. Tom gets to be The Wiz, lucky guy. And alas for me, there are very few great soprano villains, so I defer to my fantastic buttery voiced friends Tina and Harini, and content myself with a frumpy dress, and apron, and a ballad. Aunty Em, here I come.
Very few of us cancer survivors would be here at all without clinical trials. Every new drug that emerges as a possible weapon in the battle for our bodies is an unknown in the beginning. Before it even gets tried on people, it has to be determined safe. How do we find out the answers? Human beings. Pioneers, risk takers, people for whom the options have become fewer and fewer.
One of the first women to take herceptin was at death’s door. She was invited to be part of that study but declined, having had enough of treatment misery and thinking she had accepted her fate. She was invited again, after tests confirmed that her cancer was overexpressing the Her2 protein to a very large extent. That woman is still cancer free, alive and well in a small town in Washington State. She braved an unknown chemical, with unknown side effects or outcome, in the hope for another chance to beat cancer. Because of her, and the other women in that study, I and many other women with Her2+ cancer cell types are alive. We are perhaps 25% of breast cancers, and our prognosis used to be grim indeed. Herceptin, and the brave women who were human guinea pigs, changed all that.
The prognosis for Inflammatory Breast Cancer is statistically still grim. However, today’s statistics don’t include a huge number of us treated in recent years, after major advances have been made in treating our disease, advances that were tested before they were put into practice. My treatment protocol, with herceptin used with adjuvant chemotherapy, was approved for that use only a mere three months before I was diagnosed. I am so grateful that my doc was a trailblazer! She predicted that dose-dense chemotherapy would become standard for aggressive, locally advanced cancers, and I am seeing that come to pass.
This is on my mind because my friend Susan begins a clinical trial today for a new combination of chemicals, in the hopes of knocking the —- out of this latest, fourth manifestation of cancer, now in her lungs. I can’t imagine the fear and the hope she must be experiencing today.
I remember my first chemotherapy infusion. I was scared to death. I didn’t know what these chemicals would do to me, or even if they would work. By the fourth infusion I was not afraid, because I knew about Adriamycin and Cytoxan. What they did was nasty, but no surprises.
The first Taxol infusion was scarier, because of all the disclaimers and warnings I had to sign! When I didn’t turn green or blow up that was a relief. Feeling like I’d been hit by a truck and then flattened by it was nasty, but I knew that it would ease off over time. It also helped that I could see that the mack truck I’d been hit with was knocking down my cancer.
I also knew that trial and error had evolved these treatments to the point of the least danger for the most benefit. This was available to me because of the brave women who had risked before.
Today, I am hoping that Susan will find the least suffering for the most benefit. I am praying that this battle will end the war and see her triumphantly resuming her life, tending to her sweet family and doing what she loves.
And, asking once again for all who can to join the Army of Women! When we know what causes breast cancer, we can reduce the suffering on the other end.
I just read a story about the youngest breast cancer survivor, a little three year old girl. She is now four, and already and activist!
This is the name of a kid show that my daughter watches. Once again I am up when I it would be better for me to be in bed. I just have this Type A streak that will never reform! I’m not upset about it. I don’t mind being a Type A if it is about something that makes me feel alive and passionate, something important.
What made me think of “random” is the phenomenon of survivor’s guilt. That’s been a hot topic on one of my discussion groups, and it is something I struggle with sometimes. When I read a story like the one I just wrote about for instance. Some women go through chemotherapy and it is not effective, and they try something else, and nothing works. For some it works well, for some marginally. I have a new friend I’ve never met, and we both posted to another about the fear of recurrence that plagues all of us. Right out of treatment, we all wonder if we’ve really dodged the bullet. The fact is there’s no knowing, and predictors don’t always tell the story. My friend Kelly, whose cancer presented in a much more complicated way and responded to treatment poorly in the beginning, is still here, as am I. We are, as we have discovered, part of the “Class of 2007″. We are discovering that there are a lot of us! Quite a few of us it seems have busted the statistics.
Now, what about the early stage cancer, the one where treatment went smoothly, margins were clean, plenty of options, and the nasty beast comes back and wreaks havoc? It’s just not fair! When I read about a young mother who lost her battle after a 14 month fight, I stand in amazement and gratitude. I don’t feel guilty most of the time, but I feel unbelievably blessed.
What cancer does is just so random. It is unpredictable, capricious, unfair. Part of living after and surviving well is learning to live with uncertainty!
What I know is that since I am still here, it is my gift and privilege to continue to advocate on behalf of those who cannot, and to do my part for those who will be diagnosed.
It’s not guilt anymore, exactly. It’s a sacred assignment that is mine because I am alive. Since I am alive, and have this assignment, it is imperative that I safeguard my future and present as much as I can.
Now, to bed, because my body is telling me it wants rest.
I’m going to be nice to my friend and take her to bed! Follow the link to “My Body, My Friend” at Everyday Health.
It happens all the time. I follow a link, to another link, and another, and get drawn in to a woman’s story. I laugh and cry with her until the posts end. Sometimes I know what happens, sometimes I don’t. So many women with IBC who I will never meet, who have touched me deeply.
The story I was reading at this late hour was of a woman diagnosed with Stage IIIB triple negative IBC. Her treatments started in May of 2009. She was likely set up for a protocol similar to mine. In December of 2009 she was finally having surgery. Her first chemotherapies were unsuccessful. The tumor grew. It hurt. The chemo made her very sick. I was so sad.
I found some good news later, a good path report after surgery. After 2009 I did not find any more entries.
Did she get tired of blogging, or did she leave us? I’ll never know.
She said in one post that she had taken a break from her blog because cancer was becoming what defined her life, and she wanted to remember that she was herself, not cancer.
I pray tonight that her silence is the silence of one who has picked up her life where she left off. I hope….
I picked up this image from one of her entries. I’ll call her IBC sister in my heart and wish her well. I hope she won.
Like the conscience in old cartoons, My Own Death sits on my shoulder, reminding me to pay attention and treasure my life.
I was noodling around this evening as I often do, looking for cool juicy stuff on the internet, and my meanderings brought me to an article written by a Palliative Care nurse. She writes about the common regrets she hears from the dying. I was deeply moved by the article, because what happened to me is that I got a second chance, so every regret that she listed was a change I had the opportunity to make in my life.
Everyone who faces life threatening illness and survives gets a second chance if they choose. I am so grateful that my second chance came while I was still young enough to have more years to enjoy my children, and to follow the passions that I had forgotten on the back burner for so many years.
The little annoyances and aches and pains that make me afraid are the reminders of my commitment to myself. None of us knows how long we have. Am I doing what I want to be doing, what matters most to me with each day that I have?
Susan said in her blog, “please don’t pity me. I have work to do”. I am certain that the passion she has for this work of the heart that she does will keep her alive. I feel deeply that my passions keep me well, and feeding them is a smart survival program.
Today I joined my daughter and my husband for the audition workshop for “The Wiz”, the musical that Bay Area ETC is doing this spring. Part of me thinks I don’t have time, and that I have other important things to do. This article was a timely reminder that doing what I love is the most important thing I can do, and the fact that I get to do it with my sweet family makes it all the more ridiculous not to do it. So, this week I’ll be warming up the pipes, practicing my cackle and hoping the director can see my diabolical side!
Well, here she is again fighting the beast. Damn.
My friend who I have not met, Susan, has learned that she is facing cancer a fourth time. She is gearing up for yet another hard fight. And what was she doing before she found out about this? Advocating, of course.
She has worked out a partnership with Lymphediva’s and Crickett’s Answer, a nonprofit in memory of Crickett who died of breast cancer. For details about this, go to Toddler Planet and read Susan’s last two posts. I could write about it, but I’d rather sozzle on Susan’s Story.
Once again our Heroine is facing another Dragon, sent by the Gods to test her strength and her courage. Each one develops another skill that she will need in order to do the work that her Spirit Guardians have sent her here to do. She is tested again so that she can give even more hope when she has conquered. She does not know that they are watching her every moment, and they are pleased and proud.
Her struggle is catalytic to others who are tempted to do less than they can.
Her latest diagnosis is an opportunity for God to do a Great Work and prove again that prayer works, and love conquers.
She is the Great and Powerful Priestess facing the obstacles to the Four Directions, one challenge in each quarter, and this is the last gate to Victory.
I love making up stories. Susan’s latest post asks for support, but not pity. I am not even tempted! When I was fighting, a friend shared with me that another old friend had made the comment, “well, if anybody can do it, Eddie can!” Eddie meant me by the way. It’s along story…
If anybody has the wherewithal to face this again, she does, and I’m sure it really pisses her off that she is doing it again. It pisses me off too. It’s time for her to get a break!
So, what’s the story?
What if the meaning in this story is the magnitude of one woman’s impact, and the impact of love on one woman? Let’s show her.
Please, think a good thought for my friend, send her prayers, send her love. She has done so much for so many.
When I was diagnosed, I made a very specific request to God. I said,
“Dear God, if I have ever done anything worthy, if I have ever made a positive contribution to someone’s life, earned any good karma, done a good deed, if there is any positive kickback that I have earned in this universe, please, PLEASE send it NOW! This is when I need it”.
I don’t know if I deserved it all, but I got back more than I ever expected.
I hope Susan’s good karma is rushing now at her in a fantastic wave of grace.
Today was such a good day.
In the back of my mind, when I was very sick from the treatments that I was banking on to save my life, I had the thought that at least I would better understand the patients I work with after I get well! Maybe I take this silver lining thing just a bit too far, but it works for me. I have heard more than once that people who find meaning in their illness tend to do better in the long run. I have quite a story I made up about mine, and just because I may have made it up doesn’t mean it isn’t true!
Years ago, I learned a principle from shamans:
“Effectiveness is a measure of truth”. This is a fancy way of saying it’s true if it works!
The meaning that I attached to my cancer was that I was going deeper into my own healing journey so that I could be of greater help and service to others. My cancer gave me the opportunity to clarify what is important to me, and my ability to tolerate more suffering than I ever thought I could taught me that I’m stronger than I ever thought I was.
I learned that expressing my creativity and seeking and making beauty in this world is good for my health, and the love of my friends and family taught me what a difference love and care makes to all of us.
Today I was blessed to walk into a room where an adolescent girl was moaning in distress, and hyperventilating because she was so scared. I was blessed to walk in there because I understood. After I spent a half hour with her she was calm and breathing normally. Her mother appreciated it so much! Every one of my massage therapist colleagues could have made her feel better. Being the one to do it today was a blessing to me because understanding her fear and her suffering made the experience richer for me. I appreciated perhaps more deeply what an impact I had been able to make.
I am blathering. How to express the inexpressible? How to give words to the satisfaction of giving comfort after having needed comfort deeply? Now I understand better what my friends received from tending to me, while I feel also that I am deeply in their debt.
I do remember what a ray of hope it was to have someone speak to me who had been through the same ordeal I was facing. Remembering this, I shared with a fuzzy headed young man recovering from a stem cell transplant that I had faced cancer. He was wildly curious about it. His mother was too. She was especially impressed by the thick knot of hair that I had in a gazillion clips to keep it out of my way.
I keep my hair long now, and it’s still growing. I do this because every inch is more distance from my diagnosis, and is representative of the length of my survival. It also has meaning attached to it, given by me. I had a vision once, when my dear friend Deborah was doing her healing work with me, of myself strong, sinewy, older, more wrinkled, with long brownish hair streaked with gray. I decided that this was prophetic. I take comfort in this vision as my hair grows. I am going to be an old, strong lady with lots of hair, full of gray ones that I earned. At least I choose to believe this, and act as if.
As Jean says, acting as if I have control while accepting that I do not.
One thing I do have control of is the story I embrace as my story, and the meaning I attach to it.
Today my story is one of blessings and great healing.
And the day’s end? Painting my daughter’s nails bright pink. Life is grand!
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!
The new year is upon us, and I feel that I hardly skipped a beat. Where did all that downtime go? What downtime?
Kids are back in school, and once again I am trying to decide what to do first each and every day. Always several too many choices. This is the downside of a “composite career”. Or, as Jean says, “a beautiful patchwork quilt”. This is my work and home life, patched together out of the things I find most meaningful.
I had kind of a down day today, because I am frustrated by the remnants of chemo-brain that still make it hard to juggle the many interests that I do. I like things like this. This is my dream life, really. Some work at the hospital, some theater, some massage therapy, doing my mom thing, blogging, advocating, learning, researching, attending to my own evolution. It’s satisfying, it’s interesting and well….
It’s complicated! Too many details to keep track of, too many things to forget. My smartphone was stolen recently, and my whole house of cards fell apart! I had hailed my droid as the solution to my organizational woes, and it is, as long as I don’t lose it!
I got an email from my supervisor at the hospital about some details I didn’t get right, and I felt crushed. I had far more of a reaction than I would consider appropriate for a couple of wrong stickers and a missing form. I think I just had a “poor me” moment. Chemo brain, dammit. Then it was a “you loser” moment, from ‘way, way back. Truly, I know better than that.
Dropping a ball or two, or forgetting to cross a “t” is only an issue if I do the same ones again. Part of coping with chemo brain is learning how to back things up so I don’t have to rely on my memory. So I guess some new checklists are in order, and a back up system for my smartphone. I resent having to adjust to having “a brain like a sieve” to quote my kids. I used to have a memory that never failed. I used to have a strong left arm too, but oh well. I’m still here, and I guess I get to gripe once in awhile. Griping is cathartic if I don’t make a habit of it.
Going to take my cranky self to bed now, and pray for my friends who have worse things to complain about.
I thought I was done for this year, but no!
I was inspired by a post by the woman who has influenced me profoundly in the brief time I’ve been reading her blog. She wrote a letter of thanks to Lymphediva’s, for making it cool to wear a compression sleeve. I concur, I love my lymphediva sleeves! I am convinced that having a fashion statement to wear on my arm actually means that I wear it, and so my lymphedema is very well controlled. I appreciated that she took the time to express what a difference this product has made in her life.
So, how to express my appreciation to someone I’ve never met? All the same, we share a common trial and purpose, and she has shown me the way with grace and dedication.
Your story and your commitment are an inspiration to me. What inspires me even more than these is how deeply you live these commitments, choices that you make for the betterment of our world. Your dedication to your children at all times reminds me to appreciate mine, the time I had with them before cancer, and every precious moment I have with them now. Your desire to be an advocate goes further than just your own words, you have engaged others to carry your experience further that other lives can be saved.
I ask people about IBC and the majority know nothing about it. You are one woman sending ripples ever outward, inspiring, sharing, pushing, encouraging, struggling. All of your work, impassioned as it is, will not be enough to bring the awareness and resources for IBC that are urgently needed. Thanks to your powerful forward motion in the face of numerous setbacks, I know that each one of us that works to stop IBC from taking the lives of women will make a difference.
I have pored over your blog posts to learn your history with IBC, and I am both amazed and terrified. You have weathered horrific trials with your integrity, purpose, and love for God and your fellow human stronger than ever.
In a just universe, you would have a reprieve after all that you have faced,to move forward after IBC and leave it behind. In a just universe, none of us would have to face it even once. You faced it a second time and now you are still moving forward. I wish with all my heart, and am praying, that the Taxol that took it’s toll on you has done it’s job, that your future and amazing legacy will be secured, and your beautiful boys can be blessed by their mommy for decades to come. You have helped me to be less afraid.
You are a scientist, an advocate, a wife, a mommy, a spiritual seeker and a powerful woman, and you manage to do and be all of this with cancer fighting you for your life. Bless you Susan. You have made a profound impact on my life, my survivorship, and my future.
Wishing you peace, happiness, and health in the coming year,
with great respect,
IBC sister and aspiring IBC awareness advocate
Happy New Year!
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.
- Click here to try a free sample of the most effective pain relief cream on the market.
Share the Love
This blog is a labor of love, and it has to fit into the nooks and crannies of my crazy, busy, wonderful life.
The few ads, affiliate links and other goodies help me enjoy getting my blog groove on here without feeling like I'm playing hooky, since I have dependents and I'm supposed to be at work! I also share the love with my favorite breast cancer research organizations.
Thanks so much!
- after treatment (21)
- Breast Cancer Awareness (4)
- chemotherapy (18)
- children (2)
- Complementary Therapies (4)
- Deadline 2020 (6)
- Feelgood (8)
- Getting Through Treatment (1)
- Guided Imagery (1)
- Guided Imagery (3)
- Humor (6)
- Inflammatory Breast Cancer (12)
- Life (4)
- Living well (7)
- Lymphedema (1)
- metastatic breast cancer (1)
- nutrition (3)
- prevention and diagnosis (7)
- recurrence (5)
- research (8)
- Resources (2)
- self care (32)
- statistics (4)
- Support (11)
- surgery (2)
- Survivorship (31)
- Uncategorized (69)
- Elizabeth on Inflammatory Breast Cancer
- Allan Birmantas on Inflammatory Breast Cancer
- Auntie on Contact Me
- Elizabeth on What to Know Before Your First Chemotherapy Session
- Sheila Warren on What to Know Before Your First Chemotherapy Session
- September 2016 (1)
- September 2015 (1)
- August 2014 (2)
- April 2014 (1)
- March 2014 (1)
- February 2014 (1)
- October 2013 (1)
- August 2013 (1)
- May 2013 (2)
- January 2013 (1)
- October 2012 (1)
- August 2012 (2)
- July 2012 (2)
- May 2012 (4)
- April 2012 (3)
- March 2012 (3)
- February 2012 (4)
- January 2012 (2)
- December 2011 (2)
- November 2011 (3)
- October 2011 (3)
- September 2011 (7)
- August 2011 (9)
- July 2011 (3)
- June 2011 (1)
- May 2011 (5)
- April 2011 (3)
- March 2011 (2)
- February 2011 (7)
- January 2011 (11)
- December 2010 (26)
- November 2010 (29)
- October 2010 (9)
Tagsadvocacy appreciation army of women breast cancer breastcancer breast cancer awareness month cancer cancer statistics cancer treatment Caringbridge chemotherapy chemotherapy 101 deadline 2020 diagnosis Elizabeth Danu gratitude guided imagery happiness healing IBC imagery inflammatory breast cancer liberationofpersephone media medication metastatic disease neulasta nutrition pink ribbons preventing breast cancer relationships research self care sleep statistics survival survive survivor survivors survivorship theliberationofpersephone.com thrive time management white blood cells yoga
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
- The Liberation of Persephone is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com. Every item listed with this program has been personally used and valued by the author.