Have you ever thought about what happens to small children when a parent has cancer? What about a sister or a brother? I know what happens, and it’s heartbreaking. My children are still carrying the scars of what they went through with me. When a child watches a parent fight cancer, life as she knows [...]
Have you ever thought about what happens to small children when a parent has cancer? What about a sister or a brother?
I know what happens, and it’s heartbreaking. My children are still carrying the scars of what they went through with me. When a child watches a parent fight cancer, life as she knows it is over. Our children are the casualties of our battles with life threatening illness, and support for them is sadly lacking.
I want to change this! It’s not even something that would be hard to do, but it is urgently needed.
What I’m talking about is a play group for children whose parents are facing life-threatening illness. What it would take is a place, a child therapist, some grownups who care, some art supplies and toys, and children. For kids, other kids are the most important part.
What happens to a child when mommy, daddy, sister or brother is sick?
First of all, complete disruption of established routines, which every child needs. Suddenly the house is full of people who seem very concerned. Mommy or Daddy can’t take care of them as usual, so others come in to care for them.
If people are bringing meals, the usual food and eating rituals are disrupted.
Children are frightened, but everyone is so absorbed in the care of the ill parent or sibling that these fears may go unacknowledged. Suddenly there is very little attention available for them. If their primary caretaker is ill, the abandonment and fear is terrible.
They are afraid, but they know that everybody is worried so they may keep their fears and concerns to themselves.
When I was fighting my cancer, I got my children into therapy. It wasn’t nearly enough but it helped. They both wanted me desperately, but I was busy fighting my disease, and often too ill to care for them. Others had to help me, but my children wanted me. I held onto the nightly bedtime ritual to try to maintain some kind of normalcy. I only missed bedtime lullabyes three times. If I did nothing else, I did that.
Several things stand out in my memory of this time, about my children.
First, a kind teacher at my children’s school took them under her wing and taught them to knit. My second and fourth grader gave up their recesses and lunch breaks to knit me a pink hat and slippers. I asked my daughter what that meant to her. She told me that it showed her that somebody cared. Other than Mrs. Tanamachi’s kindness, my daughter felt invisible. She felt that she was in another world, one that no one understood.
I know that feeling. When my father was dying, I remember a brilliant Seattle day when the sun was bright, the water sparkling, and the air fresh. It was all wrong. My father was dying. My girl described this same feeling to me. How can everybody go about their business when her mommy was sick and could die?
At this same school, two mean twins taunted my daughter that her mama was going to die. Kids can be so cruel.
There was a child in my daughter’s class who had survived leukemia. His mother told me that her son preferred to be with my daughter, because she “gets him”. There was some kind of well of compassion that my daughter had, that helped this boy.
What could be more therapeutic for these suffering children than other children?
If you’ve ever been on Planet Cancer, you know that it feels as if you are alone in a strange world. Our children feel this even more keenly. Just having children in a space together would be hugely life-changing for them.
What I want to create is a space for children to be together and know that they are not alone. I believe that every facility that treats life threatening illness should offer this component. My first thought was for children who have loved ones facing cancer, but other illnesses have similar impact. It wouldn’t be difficult. Someone just has to believe it’s important enough.
Will you help? I don’t want money or your signature on a petition, or anything like that. What I want is for you to pass the word to anyone you think could help make this happen.
This week I am going to discuss this project with my local cancer care facilities. What I am committed to is that someone who can make it happen will take it on.
If my children had been able to get this kind of support, they would have experienced being supported through a rough time instead of it being the most terrifying time of their lives.
If you have any ideas, resources, or suggestions to help me with this project, please contact me at email@example.com. We can make an impact on a child’s life that will last a lifetime.
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 [...]
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!
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? [...]
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!
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 [...]
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 [...]
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!
I remember those days. One day, during chemotherapy, I just couldn’t get comfortable. No matter what position I settled into, sleep eluded me, and wakefulness was no fun. I stumbled out of the bedroom and out into the kitchen where my boyfriend was puttering, and told him I just couldn’t take it! I was sick [...]
I remember those days.
One day, during chemotherapy, I just couldn’t get comfortable. No matter what position I settled into, sleep eluded me, and wakefulness was no fun. I stumbled out of the bedroom and out into the kitchen where my boyfriend was puttering, and told him I just couldn’t take it! I was sick of it!
He patiently listened while I told him what was bothering me. He didn’t try to fix it, he didn’t try to make it go away or tell me everything was going to be ok. He just listened. After that, I felt better.
There were other times as well, many of them. I learned to keep a few tricks up my sleeve for those days. These are the things that kept me going, one weary step after another to the finish line.
1. Distraction. I had several really good reads stashed. When I was on Taxol, my eyes would be really bad for a few days, and I remember affectionately being out with my dear friend Christy and buying another pair of readers to put on top of my regular specs. It worked! I looked funny, but I could read. Good movies are another welcome distraction. Funny ones are especially good, but whatever I could get lost in was great.
2. Get support. Good ol’ Flo, my buddy, would get my tearful calls. She would commiserate (been there, had that stuff, yup, it does feel like Drano in your veins, it’ll ease off soon) and her husband Don would call out in the background, “This is TEMPORARY!” My mom was good for that too, although it was hard for her. Some folks weren’t. My significant other at the time would get frustrated that he couldn’t do anything about it. I didn’t call him. I let him do other stuff for me (like make me laugh) but not usually the “I’m so miserable” call.
3. Nurture your soul. Whatever feeds your heart, deep down, will surprise you with the energy you have for it! I got out my paint brushes for the first time in 20 years. It was wonderful!
4. Give yourself a pep talk, and let others give you one too. Remind yourself of how far you’ve come. Even if you’ve only done one infusion out of eight, that’s one down and one less to go. Make little black boxes and check them off if it helps. Whatever it takes so you can see progress will keep you motivated.
5. Read, listen to or watch something really inspiring. I used to keep a copy of “Remarkable Recovery” under my bed, in easy reach. It was full of stories of people who had recovered beyond expectations, in a number of ways from a number of illnesses, including rare and aggressive cancers.
6. Be taken care of like you would care for your beloved child. Cozy blankets, hot chocolate in bed, whatever makes you feel nurtured, body and mind. Get a gentle massage from someone who is skilled and careful. Have someone who is caring for you make you something delicious.
7. Make plans for all the great stuff you’re going to do when you finish treatment! Daydream, make lists, whatever puts the future without feeling rotten within reach.
8. Have someone take you to a beautiful place that restores you, like the beach or a beautiful garden. Or, if you’re well enough, pack a picnic and take yourself!
9. Give yourself small rewards. I used to go get a Jamba juice after every infusion, if Flo hadn’t already brought me one!
10. Read all the loving messages you’ve received on cards, on the internet, and anywhere else. Let them remind you how supported you are.
11. Make your own list, and make it full of choices. Do it while you’re not feeling like you just can’t take it anymore! Include very easy things so there is always something to do that could make it easier to move one more step forward.
12. Pat yourself on the back often! This journey is not for the faint of heart! You didn’t choose to be on it, but you’re a trooper for staying the course.
Any more ideas? Send them on!
Chemotherapy is a task that can’t be done alone. It takes a lot of people, doing a lot of things, to help a loved one cope with cancer treatment and allow her or his body to cope with the treatments and heal. Community is essential. I became familiar with Lotsa Helping Hands when a friend [...]
Chemotherapy is a task that can’t be done alone.
It takes a lot of people, doing a lot of things, to help a loved one cope with cancer treatment and allow her or his body to cope with the treatments and heal. Community is essential.
I became familiar with Lotsa Helping Hands when a friend of a friend was diagnosed. I did not live very near to her, but I could be in communication, and everyone who was able to help her with all the gazillion things that needed doing had a way to keep it organized.
If you’re facing cancer treatments and are willing to say “yes” to all the help that people want to give, you might benefit greatly by forming an online community. You don’t even need to be computer savvy. Just the person you put in charge, and I highly recommend that it not be you!
If you are someone who wants to support a loved one and don’t know how to go about it, once again an online community can be a huge help. The patient lets everyone know what is needed, and the community fills the gaps.
The benefit of this is not simply logistics. It is also support. My Caringbridge journal provided me with this, and I had Susan Moore Rodgiguez (5th floor charge nurse and resident angel) organizing food delivery, and I was able to organize child taxiing and care.
It is deeply healing just to see how many people are willing to jump in and help! You wont know unless you ask. If people are given a way to find their helping niche to show their love and care, they are happy to do it.
Lotsa Helping Hands is a great resource. I’ve included the link here. You can also simply set up a mail list (someone other than the patient in charge!) or, I’ve seen Caringbridge sites used in this way as well.
Most of all, don’t be afraid to ask for, and receive, all the help that people want to give. It’s good for them, and will make all the difference for you!
My cancer was very hard on my children. The tough part about that was that I was not strong enough to give them everything I wanted to, to help them cope with it. Remembering the dream I had about Felicia crying and crying, a bottomless well of grief as it seemed, I really wonder what [...]
My cancer was very hard on my children. The tough part about that was that I was not strong enough to give them everything I wanted to, to help them cope with it.
Remembering the dream I had about Felicia crying and crying, a bottomless well of grief as it seemed, I really wonder what it is like for a young child. My son, who was nine at the time, went from irascible and boisterous to quiet and well behaved. He acknowledged to me later that he was scared out of his mind. My daughter acted angry all the time, and berated me,
“Ever since you got cancer all you care about is yourself!” Her little seven year old soul found it easier to believe I was being selfish than to know how sick I was.
Obviously, I had to take care of myself, or I could not hope to be around to raise them! It was heartbreaking.
So, how can we support our children when we are coping with cancer treatments and everybody in the neighborhood is caring for them?
I got my children into therapy, and I am glad that I did. I discovered that my children did not want to burden me with things that bothered them, because they did not want to cause me stress. Their father and I are divorced, and unfortunately, meaning well, he encouraged this. Therapy was a safe place for them.
A friend of mine sent a book that was also helpful, by two sisters named Abigail and Adrienne Ackerman, called “Our Mom has Cancer”. My daughter read it over and over.
What I did was hold on to our bedtime ritual no matter what else was going on. I have always been a working mom, so our bedtime was special. Each child had his or her own special songs. My son liked gentle nerve strokes on his back, and “one more shiny minute” (that meant two!). My daughter had different songs, and her own ritual.
During the long months of treatment, if nothing else I managed the bedtime ceremony. The two times I was too sick to do it were the worst part of the journey.
Now, three years later, I know they have been affected, but they continue to do well. They still see a therapist every so often. They are accustomed to me taking a rest in the afternoon if I need it. My daughter laughs now about calling me “baldy” during those hard days. Now, at 11, she is very kindhearted. My son is his old irascible self, and he still crawls in for a cuddle in the morning (don’t tell his friends!)
I think it is important to recognize that maybe we can’t give our children all the support they need while we are engaged in fighting our cancer. There are resources out there. So much of dealing with cancer is saying “yes” to help, whether just for us or for our families.
The goal is to survive to see our kids grow up. To do that we must take care of ourselves, and that includes accepting help to care for our children, both their little bodies and their precious spirits.
Yesterday, I had the loveliest afternoon and evening. I went and saw the Bodyworlds exhibit with my husband, my dear friend Susan, and new friend Kit. It was nothing less than amazing. Bodyworlds is an amazing display of the human body in movement, health and also in disease. The technology is plasticized human cadavers donated [...]
Yesterday, I had the loveliest afternoon and evening. I went and saw the Bodyworlds exhibit with my husband, my dear friend Susan, and new friend Kit. It was nothing less than amazing. Bodyworlds is an amazing display of the human body in movement, health and also in disease. The technology is plasticized human cadavers donated to science. They are beautifully and reverently displayed, and utterly fascinating. Interspersed with the specimens were elegant displays of relevant information. Susan and I are both massage therapists, so we were like little kids in a store full of chocolate, greeting the bones, muscles and nerves like old friends.
After the exhibit, we came home and watched a fascinating movie called “The Living Matrix”, about what they called “Informational Medicine”. The theory is that illness is scrambled information, and that by restoring the natural blueprint to the bodymind, health can be restored. It’s a complex topic too big to go into here, but the nugget that got me thinking was the discussion about the Placebo Effect. One doctor pointed out, if the placebo effect is documented to aid healing up to 30% of the time, why aren’t we using it?
In my case, I don’t think that belief itself changed anything about my disease. I think instead that the focus of my belief sent powerful messages to my body, which engaged my own healing response. I am deeply grateful that my doctors, and my mom, used their own Informational Medicine.
For whatever reason, I believed with all my heart that I would survive. I don’t know exactly why I did. The story I made up served me. I believed for myself that if I got the lesson, the teacher would leave and not return. I believed that what I was being asked to do was learn to really love myself, to open my own heart to me. I asked for any karma I had coming to make it’s way to me right then, in February of 2007. I decided to receive all that anyone wanted to give me. I used every tool I knew of to heal my whole life. This was and is my belief. I believe that staying on this path will keep me well.
What I did not know was that this story I was using to empower myself was fragile indeed. Any doctor could have deflated it easily, with one thoughtless comment or practical observation. The facts (the statistics) were not in my favor, the truth of which I was blissfully unaware. How did this happen?
It started with Dr. Borofsky. She did not tell me what she thought I had. She said that it was “very possibly” a cancer, and that we would know more when I received my full diagnosis. I was scared out of my mind. I asked her tearfully, “am I going to die?” Now there’s a silly, loaded question! Even bolder was her answer.
“No. No you’re not”. She said it with a firm shake of her head. I believed her. If she had lied, oh well, I wouldn’t be around to scold her for it! I believed her implicitly. I asked her about it later, and she laughed. She said that what she meant was,
“no, not now, not on my watch!” It was good enough for me.
When Dr. Brown told me my diagnosis, she did not express dismay when she said the words “Stage IIIC Inflammatory Breast Cancer”. It rolled off her lips like “it’s raining today, shall we eat inside?” When I asked for a prognosis, she said, “we’re optimistic”. That’s all I could get out of her.
Dr. Metkus wouldn’t give me statistics either. She said, “why do you want statistics? What good would they be? No one has ever studied Elizabeth Danu before.” My friend Flo told me that she had mentioned me to Dr. Metkus, and that the doctor had observed, “she’s a survivor”.
My mom totally censored the information she sent my way. The 25-50% survival rate for Inflammatory Breast Cancer never reached my ears. Instead, she sent me snippets of things that gave hope, and posts from long term survivors on the IBC support list.
My doctors, and the people who love me, conspired to keep me in the dark about what might frighten me, and they fed me what gave me strength and courage.
Never worry about giving someone “false hope”. No hope is false! There are exceptions to every statistical curve. This is why I read and re-read “Remarkable Recovery”. It was full of stories about people who disproved the statistics, and did what they knew would heal them. A basic principle that I learned years ago is, it’s true if it works!
My paradigm worked for me, and I am so grateful that the healers in my life supported my belief. This is the Placebo effect at work, deliberately.
This site is about Informational Medicine Power. Take what gives you strength, makes you laugh, brings hope, or whatever else you want, and disregard the rest. Reality is overrated!
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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Thanks so much!
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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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