I thought I was done for this year, but no! I was inspired by a post by the woman who has influenced me profoundly in the brief time I’ve been reading her blog. She wrote a letter of thanks to Lymphediva’s, for making it cool to wear a compression sleeve. I concur, I love my [...]
I thought I was done for this year, but no!
I was inspired by a post by the woman who has influenced me profoundly in the brief time I’ve been reading her blog. She wrote a letter of thanks to Lymphediva’s, for making it cool to wear a compression sleeve. I concur, I love my lymphediva sleeves! I am convinced that having a fashion statement to wear on my arm actually means that I wear it, and so my lymphedema is very well controlled. I appreciated that she took the time to express what a difference this product has made in her life.
So, how to express my appreciation to someone I’ve never met? All the same, we share a common trial and purpose, and she has shown me the way with grace and dedication.
Your story and your commitment are an inspiration to me. What inspires me even more than these is how deeply you live these commitments, choices that you make for the betterment of our world. Your dedication to your children at all times reminds me to appreciate mine, the time I had with them before cancer, and every precious moment I have with them now. Your desire to be an advocate goes further than just your own words, you have engaged others to carry your experience further that other lives can be saved.
I ask people about IBC and the majority know nothing about it. You are one woman sending ripples ever outward, inspiring, sharing, pushing, encouraging, struggling. All of your work, impassioned as it is, will not be enough to bring the awareness and resources for IBC that are urgently needed. Thanks to your powerful forward motion in the face of numerous setbacks, I know that each one of us that works to stop IBC from taking the lives of women will make a difference.
I have pored over your blog posts to learn your history with IBC, and I am both amazed and terrified. You have weathered horrific trials with your integrity, purpose, and love for God and your fellow human stronger than ever.
In a just universe, you would have a reprieve after all that you have faced,to move forward after IBC and leave it behind. In a just universe, none of us would have to face it even once. You faced it a second time and now you are still moving forward. I wish with all my heart, and am praying, that the Taxol that took it’s toll on you has done it’s job, that your future and amazing legacy will be secured, and your beautiful boys can be blessed by their mommy for decades to come. You have helped me to be less afraid.
You are a scientist, an advocate, a wife, a mommy, a spiritual seeker and a powerful woman, and you manage to do and be all of this with cancer fighting you for your life. Bless you Susan. You have made a profound impact on my life, my survivorship, and my future.
Wishing you peace, happiness, and health in the coming year,
with great respect,
IBC sister and aspiring IBC awareness advocate
Happy New Year!
So good to wind this one down. It was a good year. This was the year I moved forward out of cancer land, getting stronger, putting the experience behind me while looking forward to doing something good. I have heard it can take a good three years to start feeling “normal” again, whatever that is. [...]
So good to wind this one down. It was a good year.
This was the year I moved forward out of cancer land, getting stronger, putting the experience behind me while looking forward to doing something good. I have heard it can take a good three years to start feeling “normal” again, whatever that is. Normal before was a woman 45 years young, now normal is middle age. It’s ok, it feels like at least I’m moving into an energetic middle age!
While my personal journey is moving along, I continue to be amazed at how many people still have not heard of Inflammatory Breast Cancer. I’ve been talking to a lot of strangers lately, and not a single one knew what it was. The only one who had even heard of it was breast cancer survivor I met having tea with my girl. She had just had a recurrence 16 years later, and she was 80(-ish??) years young. I look around me and I see women everywhere getting the word out, and yet so few still know!
And, I continue to see the cancer beast at work in the lives of children, when I go to work. I hate it. One of my patients today was a young woman with leukemia. I just read “The Emperor of All Maladies”, a fascinating book about the history of cancer and cancer treatment. I have a new understanding of this cancer, as well as a deep appreciation for the drug that only came into use just in time for me and my contemporaries. I am acutely aware that without the persistent efforts and numerous setbacks of many, many dedicated people, I would not be alive today. This young woman will likely recover, but she’ll have to fight, and fight hard. Research is what it takes, lots and lots, persist, test, develop, learn, while in the meantime so many are just trying to stay on the planet until the new breakthrough that could cure them. The work is never done and I hope 2011 shows me more clearly how I can do my part.
Three years ago at this time I was just coming pack from an exhausting ordeal, breathing a sigh of relief while keeping my fingers crossed, knowing I would be challenged to stay in present time for the next three years, as I faced the major hazard period for IBC.
Tonight, as I write, I am taking inventory of my body and it’s odd complaints and it’s aches and pains, hoping that I can truly say that I remain NED. February will be four years.
I am not quite such a scatterbrain I think. Chemo-brain is giving way to just being middle aged. Not so bad. My energy is slowly but surely coming back. It has taken a long time! I was beginning to think it never would. I have learned that I can’t neglect self care, or I pay more dearly than I did before.
I hope 2011 brings in more increase, in strength of mind and body, and in focus. I feel so unbelievably fortunate to be here for another flip of the calendar, another fresh new year to dream up.
Another year older, another year I can thank God for.
I cannot let the year close without appreciating the amazing women I have met as this year began it’s descent, when I picked up the proverbial cyberpen and began writing again. Susan, Donna, Valerie, Joanna, Julie and Jan, Vicki, and so many more who have touched me by their courage, grace, and activism. I am humbled to be in your company.
May 2011 bring peace, health, and serendipitous blessings!
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.
When I look back at the entry I posted yesterday, I am reminded of the amazing way that so many people stepped in to support me as I went through treatment. What’s interesting to me now is that I don’t recall anyone actually asking me what I would like them to do! I was blessed [...]
When I look back at the entry I posted yesterday, I am reminded of the amazing way that so many people stepped in to support me as I went through treatment. What’s interesting to me now is that I don’t recall anyone actually asking me what I would like them to do! I was blessed in the extreme. Very seldom did a need pop up that wasn’t met before I even asked.
What everybody did was perfect. It was not usually what I might have expected, but it was what each person did best and it was always wonderful.
The Charge Nurse on the 5th floor at Mills (where I had been giving inpatient massage once a week) organized a meal sign up for my family. She put out the call, and many of my co-workers signed up to bring meals. All I had to do was tell her when the infusions were, and when the worse days would usually be.
Several of my colleagues in the Massage Therapy department took it upon themselves to see that I got a massage every week while I went through chemotherapy. One of the therapists chose to make soup instead. Every Friday she came over with fresh, delicious soup and a little visit to cheer me up.
My friend Becky, who went to comedy improv class with me, heard the news of my diagnosis and announced, “give me your address. I am going to send you a wonderful healing card”. And she did. Again, and again, and again, pretty much once a week. These were not just cards. They were wild, wacky, exuberant, sometimes soft, always beautiful amazing works of art. Even the envelope would make me smile.
My boyfriend, Steve, would call me every day on his commutes, and make me laugh. He also helped me get through it knowing I was still a beautiful woman. On rotten weekends he would take care of me, and on good weekends, our four kids and the two of us did normal things. That was all so important. He stayed with me for most of the journey, and we parted friends.
My mom, who was far away in Seattle, surfed the net for information and hope, and passed all the good stuff to me and kept the scary stuff to herself. Poor mom. That was a heavy burden, and she bore it without complaint, or even letting me know there was anything but the good stuff.
Other parents took my kids to school. Flo, my #1 sidekick and all around support person, recruited her husband Don and they took the children out regularly, and helped me get them to bed. When I would call Flo up and complain of how miserable I felt (she knew about it, she’d been there) Don would call out in the background, “remember to tell her it’s TEMP-O-RA-RY!” and I would sigh and take heart.
Several dear friends and family members flew down from Seattle, or ventured across the bay, to stay and take care of me during the yucky chemo days. Susan (I’ve known her since 6th grade. The kids call her Auntie Pickle), Christie, my mom, my sister, Holle, Aunt Ding Ding (Darlene, Ding Ding since we were babies), my sister in law Andrea, they all took their turn.
Terry took me to Filloli gardens once lovely spring day. It was perfect.
My brother set up a Netflix account so I could watch funny movies. The night after my surgery, my mom and my sister howled as we watched “the 40 year old Virgin”. Mom hired me a cleaning lady at the very beginning, and kept her until I was strong again.
My friend Melissa made me the most wonderful collection of delightful, wacky hats that I had the audacity to wear frequently. They always brought a grin when I went to the infusion center with one of those on my head!
So many people watched my Caringbridge journals, and left wonderful messages in my guest book. I would go and read them when I felt really rotten.
If someone you know is facing cancer, don’t stress about what you can do to help. Do what you love to do, do what feels natural. You will certainly be a blessing.
Looking back, I am again amazed and in awe of my army of angels.
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?
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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