Why do I sometimes embrace the pain of life without allowing myself the pleasure? When I was diagnosed, it had been 20 years since I had been on a stage. It had been longer still since I picked up a paint brush. I hadn’t taken a walk on the beach for months. Rediscovering these things [...]
Why do I sometimes embrace the pain of life without allowing myself the pleasure?
When I was diagnosed, it had been 20 years since I had been on a stage. It had been longer still since I picked up a paint brush. I hadn’t taken a walk on the beach for months. Rediscovering these things brought me back home to myself. In the weeks before my mastectomy, I painted my room purple, so I could bask in my favorite color while I recovered.
The day after surgery, I began a piece of art with a Sharpie. I thank my lucky stars that it was not my right side that was compromised!
Just after I began radiation treatments, I auditioned for the part of the White Witch in a local production of “Narnia”. I had very little energy, and I saved it for rehearsals. I worked out my cancer angst rampaging around and turning little creatures into stone, and cackling madly! Did I feel worse for it? No! It was SO MUCH FUN!
What’s the big deal about fun?
Pleasure and fun make me feel the thrill of being alive, and gratitude for it. Fun is exhilarating. Exhilaration means endorphins, the body’s own painkiller. It’s wonderful medicine.
Things that give us pleasure take us to that place where time stops, and we can become lost in what we’re doing, hypnotized, oblivious to pain or worry. When I’m doing mindless tasks that I don’t enjoy, the clock ticks away slowly, but at the end of the day I feel that time has slipped away between my fingers. When I am completely engrossed in something wonderful, every moment is timeless. I am utterly and completely in the present. This brain state is known to be a healing state.
I certainly felt that as I sought these experiences, I came back to a life I had forgotten I had, to joy that I had forgotten I could feel.
Where my life had felt like I was trying to climb out of quicksand, now it felt like my life was something worth fighting for.
Simple, physical pleasures can make pain fade into the background. When I was receiving chemotherapy, and my body hurt, I was blessed to receive a massage every week. I will never forget the generosity of my colleagues at Mills hospital who came week after week and gave me massage; Jim, Lee, Mike, and my dear friend Susan who came all the way from Pleasant Hill and gave me the comfort of touch. During the hour I received, the aches went away.
Cuddling with my children, reading them a story, or singing them a lullaby took my focus away from illness and brought it right into the stuff of life, right here, right now.
Even now, when the spectre of a life cut short is not so directly over my head, I notice that when I neglect these pleasures I don’t feel so well. I feel tense and stressed when I don’t make art, sing, or take a stroll on the beach once in awhile. When life feels like it’s all work and no fun, it’s time for an adjustment. Once I shift my priorities, I actually have more energy and am more productive.
I also believe that what is most satisfying is usually something of value that I can offer to the world. When each of us expresses most truly what’s unique to us, we find our niche, and the world is a better place for our being there.
What’s really good for me at the deepest level is a win-win for everyone in my world, and my cells know this.
My Caringbridge blog was good for me. I looked forward to blogging. When I stopped feeling that I had anything to write there, I slowly became susceptible to the blues. Picking up my blog again, in a new form, makes me happy.
What makes you happy?
Friday, April 13, 2007 11:58 AM, CDT The sun is out, and it’s what I usually call Bleak Friday, but I am not at all miserable, in fact I feel quite well! Just a little queasy, and the solution for that is simply to nosh all day. Not a bad job, considering. This is great. [...]
Friday, April 13, 2007 11:58 AM, CDT
The sun is out, and it’s what I usually call Bleak Friday, but I am not at all miserable, in fact I feel quite well! Just a little queasy, and the solution for that is simply to nosh all day. Not a bad job, considering.
This is great. The first half is supposed to be the worst, and this is it. Smooth sailing now? !!
I didn’t get outside yesterday, it was cold and windy. Lovely out today, though. Time to putter in my garden, just a bit!
Spoke with my family in Seattle, and the kids are having a fabulous time. Martin is with his second cousin, Damien. Those two have been fast friends since they were 3, and no matter how much time passes, they meet again as if they haven’t skipped a day. This left Felicia with Auntie Andrea and Uncle Paul all to herself. Her Royal Highness had a manicure and pedicure ( she described her blue toes with flowers on them, with great glee ), sushi for dinner, and then dessert at the famous Dilletante Restaurant (it’s all about chocolate… and such chocolate!). Today Felicia is with Grandma Anne, perhaps going on a ferry or some such adventure.
I spent yesterday lounging, reading “The Other Boleyn Girl” (thanks again, Andy!) and reveling in my good fortune to be feeling so relatively well.
Never will I take my health and energy for granted again! When I am through with chemotherapy I will gleefully fill my body with all the nutrition it can hold, and spend my energy in celebration of health. While I am on chemo, I cannot take herbs, or large amounts of antioxidants, because chemo is believed to work best in an oxygen rich environment. When chemo is done, my body is mine again!
Then, after surgery, the cancer will no longer be my constant companion. It is hard, living with it, feeling it in my body, always aware of the size of it, even as it shrinks. I am so looking forward to Dr. Metkus wrapping it up in a neat little package and taking it away.
Today I am going to ignore it, because it’s days are numbered, and I’m halfway through the worst. Thanks Steve, for getting pictures of the rugrats on my website, and for calling me every morning on your way to work. It starts my day right, rain or shine.
Love and Blessings,
Thursday, April 12, 2007 10:35 AM, CDT Things are looking up! Today is better in general, because I got a really great sleep last night. Amazing how the busy little people dont encourage sleep. They don’t want to go to bed, but they’re ready to go bright and early. I slept in this morning, what [...]
Thursday, April 12, 2007 10:35 AM, CDT
Things are looking up! Today is better in general, because I got a really great sleep last night. Amazing how the busy little people dont encourage sleep. They don’t want to go to bed, but they’re ready to go bright and early. I slept in this morning, what a joy!
Neulasta at 10:00, ONLY HALF, HOORAY! The neulasta is what causes the most misery to me. It’s a growth hormone, and it gives my bone marrow orders to crank out large quantities of white blood cells. The day I get the shot I feel all kinds of churning going on in there, and then my bones start to hurt. By the next day I feel as if I’m made of lead.
This time I’m ready with everything I need to stay comfortable. I have been very resistant to taking all the medicine I am given for side effects, because I’m just not a medication person… I like to try to get things in balance first, and then try meds. I’ve had to turn that upside down and get proactive. I went through the list with Grace (Dr. Brown’s assistant) and I’ll take what I need in full, before I’m miserable.
Maybe I’ll just sail through this one!
It’s a beautiful day. I think I’ll play in the garden a little, after I have some on Donna’s delicious quiche for lunch. Donna, I was so motivated I ate two pieces last night! Thanks again, so much.
Now there are some photos, courtesy of Steve mostly. I gave him my password and carte blanche to put what he likes on there. I haven’t deleted anything yet… thanks Steve!
On to a quiet day, no need to push myself at all, just try and be comfortable and be grateful that my side effects can be managed. The less I resist it, the easier it is.
That timely reminder came from my Uncle Dave, my father’s brother. My dad fought cancer and lost, many years ago, when he was 44. He had a vicious lymphoma that had metastasized by the time he was diagnosed. Dave has been in closer contact with me lately, in my court 100%. He’s a recoverd alcoholic with 20 years’ sobriety behind him, and quite a resource on putting one foot in front of the other.
I told him that gratitude is what keeps me going, day after day. I asked him if this one of the things that kept him sober. He responded, yes indeed, and the other thing is acceptance. Good words. One can waste so much energy fighting what is! I am learning to conserve my energy to use to heal myself. It is frustrating to be weak and sick, but it’s what is right now. I accept it as neccessary to send my cancer away for good.
Peace to all, and thanks. It’s going to be a decent day. A decent day during a round of chemo is a fabulous thing.
Current time Postscript:
This was in fact the easiest infusion for me, and the ones after were also easier in general although the cumulative effects of the chemotherapy got worse. There’s a science to this! More tomorrow….
I had visits with two women today who had to push for an accurate diagnosis. I drove into San Francisco to meet Valerie, who was diagnosed with IBC just a month before I was. Several doctors told her it was an abscess. She had numerous mammograms that showed nothing, and her breast was turning red [...]
I had visits with two women today who had to push for an accurate diagnosis.
I drove into San Francisco to meet Valerie, who was diagnosed with IBC just a month before I was. Several doctors told her it was an abscess. She had numerous mammograms that showed nothing, and her breast was turning red and swollen before her eyes. She pushed until they knew what it was, and then she searched until she found someone who understood Inflammatory Breast Cancer. She told me that I was the first IBC survivor she had found who was diagnosed promptly and accurately. It was a full morning, and she gave me lots to think about. If you do a Google search on Valerie Fraser, you’ll see what a pioneer she is. She didn’t wait for someone else to give her the last word on her disease.
As I become more and more connected into the cancer advocacy world it is becoming clear that far too many people are not getting diagnosed promptly, and the story I keep hearing is that people know something is wrong. They know, and their doctor tells them not to worry, to wait. I naively thought that this was most common with IBC, and that other cancers were diagnosed more quickly.
After having breakfast with Valerie I headed back to San Mateo to teach my kids. Then it was to California Cancer Care to stand with my dear friend Anne for her second appointment with her oncologist. While I was waiting, I ran into another cancer traveler. I recognized her by her “fuzzy head” and we had a lively conversation. She had known something was wrong. She waited five months for a proper diagnosis! She wonders if her ovarian cancer would have been Stage 1 instead of Stage 2 if the doctors had taken her concerns seriously.
I would love to think that this stuff doesn’t happen anymore, but it does.
The problem is that none of us wants to believe we have cancer, so it can be the path of least resistance to not worry when deep down we know something is wrong.
I really don’t know where I’m going with this rant. I’m expressing frustration. Can the “average Joe” know all about stuff the doctors are supposed to know? It is also true that doctors are human and can make mistakes, but I take issue with a doctor who decides what a problem is before eliminating every possibility.
It still comes down to advocating for ourselves, knowing our bodies well, and taking charge of our medical care.
And, scary as it is, squirmy as it makes people, I still tell every woman I meet.
It’s been a long day.
Here is the continuation of last Saturday’s post. As you can see, there was a crash! Wednesday, April 11, 2007 5:45 PM, CDT later…. blech, blech, blech. Thanks mom, for letting me bellyache and whine when it gets miserable. This one came on top of the first 3 with a cold and some antibiotics for [...]
Here is the continuation of last Saturday’s post. As you can see, there was a crash!
Wednesday, April 11, 2007 5:45 PM, CDT
blech, blech, blech. Thanks mom, for letting me bellyache and whine when it gets miserable. This one came on top of the first 3 with a cold and some antibiotics for good measure… I feel truly rotten. I keep telling myself, it’s the last of this one!
I hope Steve is right, that since the bad part started sooner, maybe it will be over sooner, especially since I may have a less fierce shot tomorrow, and I don’t have my energetic little sidekicks to take care of.
Thanks so much for caring, everyone. I’m going to take my weepy little self to the sofa, and…
just got the knock, dinner arrived, thank you Donna, you have no idea what a difference this makes. I have to eat to make the nausea subside, but it’s hard to get motivated. Thank you! I look forward to seeing what’s in the bag.
And in the mailbox, Becky’s weekly “healing card”. Oh Becky, your timing is impeccable.
one day at a time…
Postscript, present time:
This fourth infusion was in fact the second worst(!), but it was bearable with help. I look back on it and wonder where I would have been without all the wonderful people who helped me. Healing cards once a week like clockwork, others managing my energetic children, food appearing at my door…I often wondered during those times what people did who didn’t have people to help them.
After this experience I had a new appreciation of how we humans really do need each other, and for how much a difference something that seems small can make.
The thing that amazed me most of all was that I didn’t have to organize or delegate at all. People did what they were moved to do, and each time it was perfect.
Now when I am in a situation where I could help someone, I ask, and if they let me, I do.
Reading that old Caringbridge entry reminded me again of how grateful I am to my strong, resilient body. It took such good care of me for so long. I was under duress for so many years, I really can’t blame my precious body for letting in that intruder. I met him in a dream, and he was wild. Not smart, but crazy, aggressive, and scary as hell. He was in my house, waving a broom to bludgeon me with. He was only in the front hall. He hadn’t made it upstairs, into the living room, or the kitchen. In my dream, I ran outside in terror to get reinforcements. I knew I couldn’t get him out myself, but I knew that the four men outside would come in and carry him out.
I had that dream in the morning on the first day of chemotherapy. I hadn’t had my PET scan yet, but after the dream I was confident that I was safely at Stage III, only locally advanced. Steve suggested that I attack the wild man with fierce little monkeys. Always ready to run away hand in hand with my imagination, I decided that I didn’t even want to see the scary bald man with the sharp teeth in my house. I imagined him in a vast, empty white space, being slowly put to sleep until he was in a coma.
Then, I changed the image to a beautiful landscape, vast and green, with dozens of little waterways running through it. Marring this scene was a huge, ugly gray slag heap, with two smaller ones next to it. As the Adriamycin and Cytoxan entered my veins, an army of busy little purple Ewoks, chattering and busy, marched in and went to work on those slag heaps. I decided that they needed some bigger, stronger help, so I called in the Wookies. It was a busy scene there! They loaded up the mess that came off the heaps into barges, which were carried away. Every time I had an infusion, there would be a couple of days when my breast would flush, and be extra red. Then it would subside and the sheet in my breast would feel softer and smaller. These tumors went from 11 centimeter and 2 plus centimeters to half a centimeter and less than a millimeter by the time I had surgery. This was the AC. I came up with different visuals for the Taxol and herceptin when that time came.
I was of course concerned about white blood cells. I watched another man get sent home, unable to have his treatment, because his white blood cell count was low. I knew that I could not allow that to happen to me. I could not give the aggressive cancer I was fighting any opportunity to regroup and become resistant. Not one bad cell could survive! So I needed those white blood cells and I needed plenty of them.
Oh, they were so beautiful! I love my white blood cells. They emerge from the rich brown earth (my bones) and take shape in pairs. They are strong and powerful, a male and a female sent out into the world of my body to keep it safe. They look like greek gods, dressed in tunics of white and gold. They are very tall, and they have wings. They are noble, and they are relentless. Any intruder is destroyed immediately with a beam of gleaming light like a thousand suns that comes straight from their hands. If two of them are not enough, they communicate telepathically to other pairs of guardians, until there are enough to surround the threat completely. I still to this day am aware of, and grateful to these majestic and fearsome protectors of my body.
By the fourth infusion, my neulasta dose was cut in half. When I started Taxol and it was neupogen (a slightly different medicine) I needed a reduced dose of that one as well.
I met my objective. My treatments were uninterrupted. My body stayed the course, and I will always appreciate my body for it’s loyalty and patience. I admire it so much for not allowing that terrifying breast cancer past my lymph nodes to escape into my organs and bones. I am amazed and grateful that it withstood years and years of relentless stress before succumbing to a persistent invader. Even then, my body was still there for me, and I finally learned how to be there for her.
My beautiful white blood cells are still there, protecting me.
Wow, what a long strange trip it’s been! I started the Caringbridge site when I was just about halfway through my four months of chemotherapy. I wish I had begun much sooner. Blogging helped me through, but more importantly, I didn’t have to talk on the phone to wellwishers while I felt rotten, and I [...]
Wow, what a long strange trip it’s been!
I started the Caringbridge site when I was just about halfway through my four months of chemotherapy. I wish I had begun much sooner. Blogging helped me through, but more importantly, I didn’t have to talk on the phone to wellwishers while I felt rotten, and I didn’t feel guilty about it because I knew they could check up on me. On those days when I felt really abysmal, I would look through all the good words in my guestbook and feel better! Since that first blog, I posted 408 entries totalling 136 pages. Most of these were written before 2009. I also had over 15,000 visitors. Now that’s support! You can find the link to Caringbridge to the right of the page. It’s super easy, it’s free, and if you’re walking the tough path right now, it will help you in more ways than you know.
So here’s a bit of history from the archives. I’ll publish the good ones as I go through my old journals. I’m getting ready to shut down that site, to make way for someone who really needs it.
April 11, 2007
Well folks, it’s full speed ahead!
My white blood cell counts are so good that Tim (nurse) is going to ask Dr. Brown about cutting my neulasta shot dose, which will make this round easier for me. Huzzah, 4 of 4 down!
Today is wierd Wednesday. I always feel strange on Day 1, kind of racy and disoriented, running hot and cold, just odd. But it’s not bad, just disorienting. By Friday I feel rotten, but this time maybe not so bad if the shot is not full strength.
The infusion went fine. I was blue at first, annoyed that I have to deal with a cold on top of chemo, but then my ray of sunshine arrived (Flo, of course) bearing Jamba Juice, a sweet, buttery goodie and a big smile. That made things better! It got better still. I made a new friend, Avis, who came in for her infusion, took the chair next to mine and beamed at me the way I like to beam at people. She had a friend visit too, and the four of us passed the time in very good spirits. It even got a little bawdy…the topic of breast reconstruction set that off… where else do people have a good laugh about that stuff?
Laughter gets me through… Thanks Avis and Company, thanks Terry (my impov teacher) who said, “It’s so hard when your body feels so bad, but your heart is so wide open!” So true, and she knows. She went through it four years ago. I feel this opening getting wider every day,opening into full flower like the intoxicating roses in my garden. Thanks Steve, for making me laugh this morning, and putting the picture on my website. Thanks Cindy, for the yummy lentil soup I’ll be noshing on while I’m hunkered down these next few days. And thanks Terry, for the Trader Joe’s run today for the stuff I forgot!
So now I settle in and take care of myself. My only job at this moment is to rest, heal, get well…thank you all for your prayers and good wishes. I truly could not do it without you!
Current time postscript: neulasta was the stuff that you get to instruct your bones to make more white blood cells, so your counts don’t get low. It made my bones hurt, a lot. I used guided imagery to tell my bones to produce white blood cells, so I ended up getting half the neulasta. That fourth infusion was much easier.
That is the question… Is it more important to stay on the straight and narrow with diet, exercise, good health habits etc. or do you get to goof off because that is good for your soul? I think that a balance between the two is essential. All work and no play makes Elizabeth a dull [...]
That is the question…
Is it more important to stay on the straight and narrow with diet, exercise, good health habits etc. or do you get to goof off because that is good for your soul?
I think that a balance between the two is essential. All work and no play makes Elizabeth a dull girl. When the three tween girls who have been negotiating their spoil bring me some, I am delighted. Reese’s peanut butter cups, yum!
Sometimes people ask me, “did your cancer diagnosis make you change your diet?” Of course the implication was that it was probably rotten before. Actually, it wasn’t. One of the toughest parts of living another woman’s nightmare is that she wants to make sure it will not happen to her, so she has to figure out what I did wrong so she can reassure herself that she is safe. That’s a whole different topic for another day!
Back to straight and narrow…
How is it that some folks do everything right, eat very well, exercise, practice yoga, meditate, don’t eat red meat, drink moderately if at all and still get cancer? Others do all the wrong things and live to be 90. Go figure!
Yesterday I saw a video of the oldest concentration camp survivor, named Alice. She’s a pianist. She is 107 years old. She survived because she was a famous concert pianist, and the prisoners who could make music had something to offer their captors. What struck me most about her was that she is happy. She plays the piano every day, still.
How much health value does happiness provide? How do you break down food made with love into bad or good?
Obviously I don’t go crazy on red meat or skimp on vegetables. I walk most days. I tend to my health. The most important thing about that is the message I send to my soul. I strengthen the connection between body, mind and spirit by being committed to caring for me. This is self care from love, not fear.
If I am terrified of an occasional hamburger, or if I am awake nights because I ate a peanut butter cup, then my self care is motivated by fear. Fear is hard on the body and weakens it. Love strengthens it.
When I was very sick, one of the nurses I worked with organized a food delivery sign-up so that I would not have to prepare food for my family. I never worried about whether that food was vegetarian, how much fat was in it, or anything else. I was so grateful to other people for showing they cared in this way. We ate it all, with gratitude. Gratitude is the best nutrition there is.
This Halloween eve, as I sat in the kitchen drinking tea with my friend, I got such a kick out of those girls negotiating for their favorite candy. When all three of them came and plopped a bunch of peanut butter cups in front of me I was delighted, not so much about the candy, but by the spirit in which it was given.
So, I continue to be committed to my health, my happiness, my art, my dear husband and children, and to bold, outrageous naughtiness whenever I get those special opportunities.
Here’s to your naughtiness this Halloween!
I was in Sedona for the Christmas of 2008. I declared myself AWOL because I was there alone, accountable to nobody. My children were with their dad for Christmas, my fiance was working a lot, and I knew that by the following Christmas my children would be with me and their new stepfather. It was [...]
I was in Sedona for the Christmas of 2008. I declared myself AWOL because I was there alone, accountable to nobody.
My children were with their dad for Christmas, my fiance was working a lot, and I knew that by the following Christmas my children would be with me and their new stepfather. It was one of those sudden, undeniable urges that I’ve learned to listen to. It was everything I wanted it to be and more!
I blogged on my caringbridge site, I hiked, I sought out the famous energy vortexes, I gleefully took myself out to a nice dinner on Christmas eve. I enjoyed my own company, with no one to entertain me but myself.
The last time I had enjoyed such a long period of solitude was in 1988, when I rode my loaded bicycle down the Pacific Coast alone. It was an amazing, transformative trip. Solitude and self determination have a way of peeling away layers, revealing what really nurtures my spirit and what I want the most in my life. It was the perfect thing to do to settle into the next stage of my healing, when I would no longer be receiving any chemicals at all, when I would try to move forward into my post cancer life with excitement and not fear.
The first 2-3 years are the most critical after IBC. What’s good and bad about it is that if it bites again, it tends to do it quickly. My challenge was to not be distracted by the awareness of this, to have faith that I would continue to get stronger. My mentor, Jean, said “the trick is to act as if you have control while realizing that you don’t.”. Not easy certainly, but necessary.
It has now been nearly four years since I was diagnosed in February of 2007. I think I need to go AWOL again soon!
I always look twice when I see a woman with very short hair. I wonder…. When I was wearing my bucket hat with the “cancer sucks” button on it, I was occasionally approached by survivors who wanted to encourage me. I appreciated that every time, especially the ones who had finished with treatments some time [...]
I always look twice when I see a woman with very short hair. I wonder….
When I was wearing my bucket hat with the “cancer sucks” button on it, I was occasionally approached by survivors who wanted to encourage me. I appreciated that every time, especially the ones who had finished with treatments some time before who looked healthy and well. When I’m in an environment where I know it’s ok, I do that as well and it is well received.
When it seems so but I’m not sure, I don’t ask but I want to. I want to know if she’s part of the been to planet cancer club. I’m not sure why I want to know but I do.
The cancer experience changed me irrevocably. I would not have chosen such a method to create such deep change, but my life is very different and much better. People sometimes ask me if I am glad it happened. If I had a guarantee that it wouldn’t bite me again, my answer would be an unequivocal yes, even though I am missing an appendage and wear a compression sleeve on my left arm.
It is so hard to explain how this is so to people who haven’t had to face it, and it’s an experience I wouldn’t wish on anybody.
That handsome woman there with the chic, outrageous short hair might just be another member of the club I never wanted to join, and she might not…
I guess I’ll never know.
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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My bedside companion in 2007
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