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 firstname.lastname@example.org. We can make an impact on a child’s life that will last a lifetime.
F—#*!!!! CANCER! Every so often I go roaming the internet late at night. I followed the blog of my friend Anna, and ran into the devastating stories of more lives lost, to ovarian cancer. My support of Deadline 2020 for the end of breast cancer is something I am 110% behind because it’s time for [...]
Every so often I go roaming the internet late at night. I followed the blog of my friend Anna, and ran into the devastating stories of more lives lost, to ovarian cancer.
My support of Deadline 2020 for the end of breast cancer is something I am 110% behind because it’s time for the end of ALL cancer. Yes, that is ambitious, but it’s logical. The important pieces we learn about one cancer often leads to inroads into understanding other cancers. We will wipe out breast cancer when we understand how to prevent it, and how to stop metastasis. Do do that we need a major paradigm shift, because currently only less than 5% of research currently goes into the study of metastatic disease. People don’t die of cancer in the breast. They die of metastatic disease. What the @#!!! is going on here? When we understand this process and how to stop it, the treatments for many cancers will change. For more on what’s really going on in breast cancer research, check out the Deadline 2020 website.
I lost my father to Lymphoma when I was 19 and he was 44. I have several friends with metastatic breast cancer and I am reading all across cyberspace about more deaths, a tide that has to be stopped.
Fran Visco said this weekend that when we reach January 1, 2020, we will all be out of a job, because we will have accomplished our objective.
Not me. Not until it’s over for all of us.
Here is the post that started the Army of Lego Princesses 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 [...]
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 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!
I had to laugh when I saw this! I found this on the website, Planet Cancer. A laugh is good medicine! This is an excellent website, focusing on the needs of younger cancer patients in their 20′s and 30′s. However, this ol’ 49 year old lady can still relate! I actually remember my baldheaded days [...]
I had to laugh when I saw this! I found this on the website, Planet Cancer. A laugh is good medicine!
This is an excellent website, focusing on the needs of younger cancer patients in their 20′s and 30′s. However, this ol’ 49 year old lady can still relate!
I actually remember my baldheaded days with fondness. I finished chemotherapy in June of 2007, so the remainder of the summer was spent deliciously bald. The breeze on my head was very soothing. I didn’t bother to cover my head at home, and sleeping that way was soooooooo comfortable! If it hadn’t been for the circumstances surrounding my bald experience, I would have thoroughly enjoyed it.
I had an especially good time with it during my comedy improv class. There was always an opportune time to whip off the scarf, hat, or wig!
I must admit though, it got old when my daughter would get mad at me and call me “Baldy”. I was also annoyed that the hair on my legs was the last to go and the first to come back. Not fair!
Top Ten Reasons Being Bald Rocks
10. Topless tanning.
9. No hair in your soup. Or anywhere else, for that matter.
8. No haircuts, no shampoo, no styling – can you say low-maintenance?
7. No lice. Ewww.
6. When on the run from the police, you can hide out in the melon section of the grocery store.
5. Magic Marker skull tattoos.
4. On really hot nights, a cool satin pillowcase is better than sex. Like you’re getting any.
3. Low maintenance = more time on your hands = higher blood counts (Yeah, you know what I mean!)
2. You can join the Bald Hall of Fame.
1. Aerodynamics, baby!
* * * *
For anyone reading this post who is currently bald, here’s a riddle I made up when I was bald. I know, my funny bone is peculiar….
Q: What is a bad hair day on chemo?
A: When you can’t get your eyebrows to match!
Bald is beautiful!
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,
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.
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.
I secured my first Thriver story today. My wonderful postman, Douglas, has agreed to tell me his story so I can post it as my first Thriver Profile. My plan is to present these profiles of real people beating cancer on a regular basis, around once every two weeks for awhile. I have at least [...]
I secured my first Thriver story today. My wonderful postman, Douglas, has agreed to tell me his story so I can post it as my first Thriver Profile. My plan is to present these profiles of real people beating cancer on a regular basis, around once every two weeks for awhile. I have at least twenty people on my list!
Douglas and I were talking today about what a morass the internet is when you’re newly diagnosed. There is so much information, and a lot of it is very valuable. Some of it is contradictory. Some of it is outdated and scary. I suspect a lot of us, like my friend Douglas, will flail around out there for a couple of weeks and then “just put it away”.
I want to offer something different here. For every cancer, there is somebody who has prevailed against it, and it is those people that cancer patients need to know about! If you’ve just been diagnosed with colon cancer, Douglas’s story will give you hope. If you’ve been diagnosed with Inflammatory Breast Cancer, read my story and take heart, because that is why I tell it. If you are facing Ovarian Cancer, then you can be uplifted by my Aunt Joan’s story and my freind Avis’s story, if they will let me tell them. I haven’t asked yet! :) These two amazing women have both conquered two separate cancer diagnoses.
I know people who have faced and prevailed against colon cancer, throat cancer, Lymphoma, and Triple Negative Breast Cancer. I know people who were diagnosed at Stage Four and today are cancer free. I also know people who are in remission and going about their lives, coexisting peaceably with their metastatic cancer. A friend of mine has a brother who has survived over 15 years after a belated diagnosis of Breast Cancer. All of these people are on my list, and if they say yes, you will read their stories.
As this site develops, I am getting a clearer and clearer idea of what I want it to be. This is a place to find tools you can get your hands on with great strength, tools and inspiration to keep your chin up. Sometimes keeping your chin up is the most important, and maybe the only thing you can really do today. I’ve had plenty of days like that!
You don’t have to have cancer in your present, future or history to welcome a boost of some kind. I hope anyone who wants one can find it here.
Second thing: I need to adjust my tagline. I don’t want just “resources for during and after cancer”. What can I add to this line that expresses what I’m really doing here?
Please, comment away, I need your input!
P.S. Are you seeing popups on this page? I you are, I am going to kick some —. I hate popups and I am getting them on my admin page. Please let me know!
P.P.S. I just updated “my story” with photos. It’s kind of a long story….
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!
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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