I guess I’ve been resettling and regrouping. I’ve also been sick, which includes it’s own anxieties. I had a wisdom tooth infection, then a flu/cold bug that lingered, and lingered, and lingered, and now some back pain most likely from doing something stupid, but alas go wheels and cogs.
I really am looking forward to feeling healthy again. It’s been weeks, and that’s just a bummer for anybody.
I also took a break from all the “cancer stuff”. Sometimes it’s just so hard. I want to do everything I can to bring hope and positivity to a really rough journey, for whoever has to take it. Unfortunately I haven’t figured out how to do that and not get overwhelmed by the suffering of others. Yes, it overwhelms me. I don’t like it. Who does? Cancer sucks, yes indeed.
I’m hoping I’ll learn more at the end of April, when I go to the conference in D.C. I’m thrilled that they awarded me a scholarship! Now I really have to go dig in, and figure out how to do that and keep myself sane and happy. This is something I really want to do.
Recently I read “The Emperor of All Maladies”. I was deeply touched by the story of herceptin, and the obstacles that came up to getting it into mainstream medicine where it could save the lives of people like me. There was a woman, waiting on the edge of life, begging to be given the new drug. Genentech would not release it because all clinical trials had not been completed. The woman died.
On the day of her death, activists, survivors, and patients drove their vehicles in an outraged demonstration onto the grounds of Genentech, over the lawns, through the parking lots, honking their horns and and waving signs in an uproar of protest.
More compassionate and timely studies have emerged since then. That woman did not have the power to fight alone. Because of the rest who did, many like me are still here.
My goal in the next few weeks is to actively and deliberately, with much inward work and outward resources, find a way to be a cancer warrior without having my life identified by cancer. I need to find a way to have days and maybe even weeks that I don’t think about it, because that is healthy survivorship. I need to pick the brains of other women I admire who manage to continue their healthy and happy survivorship and be the rocks that they are for others who suffer.
So, onward, back to life, back to rehearsals. The Wiz is opening on March 25! It’s going to be a great show. I’m in all of them, since I’m not doublecast, but to see my husband rock as The Wiz, check out the Silver Slippers Cast! Tickets are available at www.bayareaetc.org.
Hope to see you there!
I was tossing around, wondering what was going to happen on February 16. It had been nearly two weeks since I noticed the small, pink rash on my breast. Now the whole breast was red. My left arm ached constantly.
I knew that tomorrow I would know. I would know if I should be really scared or not. I knew that most probably I would only know that much, and would have to endure several long days (it was the Friday before a three day weekend) before I really knew what I was up against.
I hoped and prayed that it was nothing, while deep in my gut I knew something was terribly wrong.
Four years ago tonight there was still a possibility of no odyssey into Planet Cancer. I still hoped, I still dared.
The next day, I gave a massage on the second floor, walked upstairs to the Women’s Center on the third floor, and nothing would ever be the same again.
Not the same. But after it all, it’s good. It’s good and it still is, and I am still here. God is good.
Going to go have a peaceful sleep and give thanks.
Well, I just posted a rant over at Everyday Health. It’s important information.
Please, go check it out! And Susan G. Komen, shame on you!
After I posted last night, I thought hard about it and then looked up heat rash.
This morning it was better. If it was skin mets my calendula cream would do nothing for it! All appears to be well, and I am again so grateful. I never take anything for granted anymore, or try not to! Sometimes I slip and start to forget just how precious my life is to me. Then another little scare puts it all into perspective.
We all get scared sometimes. It felt good last night to write about it. In fact, the last phrase came out with a simultaneous sigh of comfort. Sometimes just acknowledging what’s so makes it less so. Strange how that works.
I remember one day during chemo, not quite three years ago. It was my third Adriamycin/Cytoxan infusion. It was the weekend. I had chemo on Wednesdays, and Fridays were usually the worst days. Saturdays were a little less bad, and by Sunday I was breathing a sigh of relief that another one was done.
This particular Saturday, I was at my boyfriend’s house. This became our pattern on chemo weekends. I’d just hang there, he’d take care of me, and we did mellow things. On the alternate weekends we both had our kids, and the four of them got along famously. We did mostly normal things (me less vigorously, but we still did) and that helped me remember what normal felt like. I tried to take a nap on this particularly miserable Saturday, and just couldn’t get comfortable. I was overwhelmed by my multiple discomforts. They were more than the sum of their parts. Finally I gave up and came out into the kitchen, where my boyfriend was busy just doing his household things.
I looked at him and started to cry. He was a real trooper that day. He dropped what he was doing and listened to me. I complained that my stomach was queasy, everything hurt, I was desperate to sleep and every time I started to drift I had to pee, because that wretched red devil Adriamycin is a bladder irritant. I spilled it all. I whined. I expressed how tired of it I was and I still had five more to go. He just listened. After I dumped it all out and looked at it, I picked myself up, went back to the bed and went to sleep for awhile. I felt better when I got up later.
Last night when I was in a panic the thought occurred to me to just say it. Just look at it, tell the truth about it, and sit with that. Yes, I was spooked. Yes, this is part of survivorship. After I freaked, then I could face what was scaring me and look at it closely. I found some pictures of heat rash and it sure looked like that to me!
I went to bed last night just as chipper as I could be.
After that awful 3rd A/C infusion, it was not until the following Wednesday morning that I felt human again. Did I mention that I had a sinus infection as well? That the A/C had a nice antibiotic piggyback on top of it? That my head felt like it was going to blow up? What I remember most was the sheer joy of waking up on a spring morning and feeling good. I was so happy I just wandered around the apartment singing at the top of my lungs for happiness. I must have kept it up for at least an hour. Mozart, Faure, Puccini, smatterings of my favorite operas and show tunes, reveling in the high notes, drawing in great breaths of life.
I feel a little bit like that today.
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….
And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I was diagnosed, I had been a full time professional Massage Therapist for nearly 20 years. I knew all about complementary therapies, but I had been neglecting myself, badly. I wasn’t just a wounded healer. I had been limping for a long time. I had just emerged from an awful divorce, huge work stress (the hospital where I worked was downsizing, and the pressure was on!), and my children were suffering. They were 7 and 9. I knew something had to give, but I didn’t really know how to get out of the quicksand I was in.
When I got the diagnosis, I knew I had to fight and fight hard. I decided that I had an opportunity to heal my whole life, and that embracing that task would give me the best chance to survive. I sought healing of body, mind and spirit, and most importantly to mend the rifts between them. The word “congruence” was my operative word, and still is. So, my take on complementary therapies is really an approach rather than just a list of modalities. having said that, I pretty much used them all!
My practices for myself:
1. Say “yes” when anyone offered help. Accept with gratitude. Believe that I deserved the help and that giving it was a blessing to the ones who offered.
2. Put myself first, for the first time ever in my life, no matter who it upset. I was fighting for my life, and I knew it. A total stranger told me to do this, and I believed her.
3. Actively and deliberately sought my own happiness. It took awhile to figure out what that looked like.
4. Made a decision to stop beating myself up, period. Nothing was gained by my perfectionism, and I was beating myself down. Now I question my tendency to self blame, and if I find something that needs to change, I take note and move on.
I had to rely on #1 a lot, because I was not in a financial position to pay for everything I received. Still, I accepted it, and it all helped, more than the sum of it’s parts. Here’s my list:
1. Massage Therapy. I received a massage once a week while I was receiving chemotherapy. My colleagues at the hospital did this for me voluntarily, on their own time. I will always be deeply grateful for this.
2. Healing Touch. I received this through a Stanford University study called Healing Partners. I received one session per week for six months.
3. Acupuncture. My mom offered to pay for this because she knew it would help. I was a struggling single mom when I went on this journey so I did not have the funds to do this. I received acupuncture once every two weeks.
4. Guided Imagery. I believe this had a huge impact on my treatment. I used it to keep my blood cell counts up, to maximize the effectiveness of my treatments, and for healing after the treatments were over. I’ve already written a short article about that on the pages for Complementary Therapies. Excellent Guided Imagery CD’s and MP3 downloads are available from Health Journeys.
5. Support: I went to an Art and Imagery support group. This was a combination of Guided Imagery and using art therapeutically. It was very helpful. That program closed at the hospital and I really miss it. I also found my Caringbridge site to be a huge source of support.
6. Counseling. Fortunately for me, this was available through California Cancer Care where I received my treatments.
7. Laughter! I didn’t do “laughter therapy” (whatever that is…I haven’t tried Laughter Yoga but I have a friend who’s into it and loves it) but at the time I was diagnosed I had been attending a comedy improv class every week, and I made sure to continue. I timed my chemotherapy so I would be up for my class, and I didn’t miss a single one! Even after my surgery, I couldn’t play, but I could watch. I’m convinced that laughing my head off every week was very good for me.
8. Exercise is very important! I took advantage of the “Living Strong, Living Well” program at my local YMCA and did weights, cardiovascular exercise, and whatever else seemed like fun. I also did yoga at home, and some chi gong. I had a couple of videos and they worked well for me. I have a chi gong video that offers a 10 minute sequence for cleansing, called simply “chi gong for cleansing”. I am convinced that my complete recovery from surgery with my range of motion intact is because I did yoga.
9. Nutrition: My doctor told me, “Eat what looks good to you”. I wanted to be a martinet about what I ate, but I had decided to accept all help so I indulged in comfort food when it was offered. What I did do is create a smoothie that covered all the bases, and I had that every day during chemotherapy. Now I’m a bit more careful, but not super strict. I find the information on “Food for Breast Cancer” useful and I read the research they publish.
10. Cultivate hope, actively. I read everything I could get my hands on about recovering. The book “Remarkable Recovery” was my constant companion. I read the stories over and over, especially if I was feeling worn out by it all. The gist of what I got from it was that beating the odds was about doing it how you do it best, and it’s different for all of us.
11. Self expression and creativity. Everybody has her own way to do this. I found blogging, and loved it. I also got tons of support online, which was a huge help. I picked up a paint brush for the first time in 20 years or so. As I went through radiation, I was also rehearsing for a musical, again for the first time in 20 years. For you it may not be this sort of stuff, it may be something else, but whatever it is, it makes your spirit hum! If you’ve forgotten what that is, it’s time to discover it again!
12. Prayer. Whenever anyone offered to pray for me, I said yes, by all means please do! Acknowledging that my life was worth praying for, and allowing total strangers to pray for me (I was on a ton of prayer lists) was an important act of self love. There is research that supports the effectiveness of prayer, and I believe deeply that true self love sets all kinds of positive cellular happenings in motion.
13. Substitute “Feel Everything” for “stay positive”. I heard that stay positive stuff all the time from well meaning people. Being a Pollyanna does not help. Neither does denial. What does help is honoring what you feel, give it expression, and keep things moving. I didn’t elevate my lousy mood by pretending I didn’t have it. I blogged, “feel like crap, going to bed” and then later absorbed the messages of hope from my friends on my guestbook. I cried my way through a few infusions, and then felt better. After I cried I could make art or settle into my warm bed with some hot chocolate. Everything is allowed!
There’s my first stab at it ladies, for my dear IBC sisters and anyone else this may help. If you have any questions about what’s here so far, or want me to elaborate some more, please send me an email at firstname.lastname@example.org. What you tell me you want is what will be in Part Two. In the meantime, I am sleuthing out links and resources.
I hope this helps!
We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite.
My last blog on Everyday Health generated comments from two survivors, one of 12 years, and one of five years. The five year survivor had story similar to what I posted yesterday. Still here, backwards treatment and all!
We need to know you’re out there, survivors!
I had a great day today. I gave a massage, did theater with some kids, and then went to the childrens hospital. Now my husband and my son are bugging me to get off the computer and go watch “V” with them. Life is good.
Everybody deserved a life that makes her as happy as mine does me. Let’s make it happen by 2020.
I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007.
The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had it in 1995. She didn’t want me to take her picture or make a fuss. She was not into a fuss thanks, got stuff to do.
What’s amazing about her story is that she’s alive, and the doctors who treated her botched it one way after another. She was diagnosed Stage IIIC IBC not before, but AFTER 2 botched surgeries where they took the wrong part of the breast! The third surgery yielded the proper diagnosis, MRM, only one breast, not bilateral because “we don’t do that”. Lots of dreadful chemo after (yes, after!) the surgery, which did not include herceptin of course because even though her cancer was Her2+ herceptin did not exist. Then, she did not get radiation either!
Yikes! And there she is, cool as a cucumber, telling me about it!
Go figure. Sometimes the best care in the world does not do what we want it to, sometimes the worst in the world doesn’t stop us from conquering. The happy medium is that these days, when women and doctors know more than they have ever before, and patients are full on players in their own story, more and more of us are going to beat it and get on with it, and decide for ourselves whether “making a fuss” is useful or not.
So much for statistics, prognosis, or any other attempt to predict the outcome of anything!
I guess what this reinforces for me is that always, always, anything is possible.
I continue to make a big fuss, to help keep things moving forward in the right direction as much as I can, for all of those who can’t.
My 15 year IBC survivor friend is quietly doing a whole world of good where she is. She is impacting the next generation, and I’m so glad that she’s still around, doing what she’s doing. She is someone I will run into frequently in my everyday life. Now every time I see her I have another reason to smile, and smile big.
The Army of Strong, Brave Princess is growing. Go to Toddler Planet and follow the link to Annie’s blog, and believe that this world is full of good people!
I ran into a friend today, one of my theater buddies. Our two daughters talked and played games on our cell phones while we had a good visit, a hard one too. She is terribly worried about a dear friend of hers, another mother fighting cancer. Felicia shared her ambition to involve her school in a massive fundraising effort for cancer research.
We had stopped into a store earlier in the afternoon that is run by a breast cancer survivor. She’s got this cute little shop on B street in downtown San Mateo, dedicated to making a difference. You can find out more about her at www.livingpeacefullystore.com. I found out that Barb was a cancer survivor when I asked her about the “Cancer Sucks” bear she had on display. I used to wear a badge on my bucket hat that said the same thing! It made me smile.
Felly and I got matching little heart necklaces with a peace sign inside. Hers is pink, mine is purple. After we visited the store, we got some frozen yogurt and she told me what she wants to do. She is envisioning car washes, bake sales, maybe a musical theater production, all to raise money for cancer research. I think she was inspired because the lady who runs the store has a son in Felicia’s P.E. class.
How many of our children have been touched? How many want to do something, and don’t know who the others are in their community that also want to do something? I’m looking forward to seeing what happens.
It’s a mighty good world, with good folks in it. Yes, there is all kinds of ugliness, violence, want, disease. And, joining together to do something about these things is such a deep satisfaction, such exhilaration, such hope. Today instead of being paranoid about my aches and pains (I have a spot at the front of my right hip that is bothering me, stretching like a nut so I can make it go away and stop worrying) I can focus on what I am able to do, and remind myself to take care of myself so I can keep doing it.
Susan, what you inspire in others inspires me. The disease you face stinks and what your courage in the face of it draws from people is simply amazing and wonderful. Now that little lego princess is on my desk too, every time I turn on my computer.
Rock on Princess!
I am continually noodling around, looking for other sites, other survivor bloggers, other IBC warriors, other resources. I love it that I can spend hours looking, and find tons of stuff, and read other people’s stories. It’s hard, too. So many of these stories frighten and inspire me.
I want to send out a massive war cry, and tell every one of the women whose blogs I have discovered that I am scrapping. I will continue to scrap, as long as I have breath, as long as I have the health that I never, ever take for granted any more.
For the women I haven’t met, who are dealing with metastatic disease, who are fighting to stay alive, I was to shout from every high place that that we who can fight for a cure are determined, and we’re not giving up.
There was just too much lousy bad news this week! Too much!
I can also go rummaging around and find inspiration and good news, people who survive all kinds of cancer, people who continue to make the world a better place advocating, telling their story, looking after others who are fighting cancer and others who will in the future.
I found a link today, the Annie Appleseed Project. It’s a website developed by a breast cancer survivor, and it is all about complementary and alternative therapies. I believe deeply that using CAM to support my body during the aggressive treatments I had was very, very helpful. I understood that the goal was for me to withstand the treatments, and taking a comprehensive approach helped me to do that. I’ve added the link to Annie Appleseed under “Resources”.
Another great thing about the internet is that none of us are alone. I was stunned and delighted to discover that my rant over at Everyday Health got a huge response, and a man from Germany wrote to tell me that his wife is a 12 year IBC survivor.
That makes my day!
We live during exciting times. The world is getting smaller. If we want to badly enough, cancer can become a thing of the past, like diptheria or other diseases we don’t even remember the names of.
I for one want it really, really badly, for all those women I have never met, who are my sisters in the IBC family we never asked to be a part of.
I just got news of a four day conference this spring in Washington D.C. and I want to go. I asked my husband if they could do without me for a week. He told me no, but they would have to, because I’ve got to go! I just realized that I can’t because “The Wiz” is running right at that time, and I don’t have a double.
That’s ok, there will be more. And I am going.
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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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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