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    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!

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    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!

    http://www.lotsahelpinghands.com/

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    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.

    Sunday, April 15, 2007 7:56 AM, CDT
    Good Morning, it’s a beautiful bright Sunday.
    Last night Steve, Alex and I watched the original “Godzilla”, filmed in Japan with clumsy dubbing and a star performance by Raymond Burr. What a hoot! Katryna was with her gaggle of girls at her birthday slumber party, so we just had Alex. Very sweet.

    I sing lullabies to my kids, and Alex likes them, so I offered. His dad requested Schubert’s “Ave Maria”. What a nice way to end a peaceful day. even with the remnants of a cold in my head.

    In the wee hours of the morning, I dreamed of Felicia. She just wanted to be held and held. She doesn’t understand this as well as my son is able to, and she’s scared. I’m glad that when I pick her up on Monday I wont be so sick, and I can handle it if she soothes her rumpled little soul by calling me “baldy”.

    It’s cruise from here, yippee… at least until the next chemo. I’ll be more relaxed when I know what that’s like, after I get past the unknown and through the first Taxol/herceptin infusion.

    When it started, this journey just looked like such a long, arduous, potentially endless trek…It’s so good to have passed one landmark. Now I can feel that this path has a beginning, steps, and an end, in sight. I don’t ever have to see those particular chemicals again, nor some of the medicines I had to take with them.
    On to the next thing, and further along the path. Yes!

    Steve got me a tomato plant. I’ll put it into the ground today, and it will bear me fruit after these chemicals are all done!

    Happy Sunday!
    Love,
    Elizabeth

    * * * * *

    Current time postscript: it does me a world of good to look back here and see how I didn’t doubt. I wonder if that had something to do with it working? I assumed that I would never see Adriamycin and Cytoxan again, and I saw progress towards the goal.

    One thing I struggle with is fear that my deep confidence is testing an unkind universe to strike me for my hubris! I know that’s crazy, but it’s that old “waiting for the shoe to drop” kind of thing. I don’t dare consider myself triumphant yet I feel as if I have won, am strong, and have work to do. I have to hold on to my belief in a benevolent higher power, who would never strike me down for believing the best.

    If my cancer were to recur, would I have failed?

    Do I not hold on to the belief that I have overcome, because it makes me feel strong, or do I humbly hold the jury to be out on that one?

    A minister friend of mine dared to prophesy that I would grow old, and hold my children’s children in my arms. He told me that I have overcome.

    Of course I fear recurrence, now that I am acutely aware of how much it happens. I have to make the choice not to let that fear distract me.

    Right now I’m here, and determined to make the very most of the time I have.

     

    Yes, Yes, Yes!

    Contest Winner:

    Pass this along please, to women everywhere!

    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

    Posted by courtney • December 14, 2009 • Printer-friendly

    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!

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    Someone on my IBC support list brought this amazing story to our attention.  Megan Waldbridge Nelson had seen an e-mail about IBC, which had been circulating on the internet.  It had been years ago, but she remembered, and advocated for herself.  The knowledge that she had in her mental rolodex, and her decision to act on that knowledge was lifesaving.

    This morning I spoke about IBC to a group of nursing students at my local coffee shop.  I saw a woman in scrubs, wearing a pink ribbon.  I saw my opportunity!  I thanked her for wearing the ribbon, and asked her if she had ever heard of Inflammatory Breast Cancer.  She had not, and her classmates had not either, although they had already learned about breast cancer.

    Since I became part of the internet IBC community, it is clear to me that a lot of us are committed to getting the word out, but still the majority of women I speak with have no idea about Inflammatory Breast Cancer.  Nursing students didn’t even know!  Every one of us who can speak about it are needed voices.  Megan is my hero today because she used the opportunity to make her story public, so other women can save their own lives as she has done.

    You can see her story by clicking on the link:

    http://www.9news.com/rss/article.aspx?storyid=168708

    I’m having a hard time getting the link to work!  If you are too, just go to www.9news.com and search Megan Waldman.

    For women facing IBC, the support list is a hugely important and valuable resource:

    http://www.ibcsupport.org/

    for more information and the most current research on IBC:

    ibcresearch.org

    I am alive today because of research (which gave us herceptin, relatively new when I was diagnosed), doctors who were knowledgeable about IBC, and because I took care of myself.  More and more women are speaking up to make sure that women and men know to take care of themselves.  This is not just true of IBC, but of other cancers as well.  The work is never done, but we make progress, and keep on keeping on.

    Thanks Megan.  We’ll be watching you!

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    Calling all night shift workers!

    Army of women has a new study that is investigating the possibility of a connection between erratic sleep and breast cancer.  300 subjects are needed.

    If you work at night, have no history of breast cancer, and want to help uncover the causes of breast cancer, please, please sign up for this study!

    You can learn more by following this link:

    http://www.armyofwomen.org/current/view?grant_id=335

    It will take an army to eradicate breast cancer.  Men can join also.  It will take an army, but I believe it can be done.  Please join us!

    Today one breast cancer death is in the spotlight.  One high profile woman who advocated for breast cancer awareness, and fought for health care reform, has died before her time.

    Elizabeth Edwards was aware that she had resources that many women do not have.  She was deeply concerned for women who are uninsured, poor and under served by our health care system.  Each one of us who is currently dealing with breast cancer or who has had it, can feel the blow of one more who has left before it was time.

    Today I am mindful of the ones who I have come to love that I never met.  Today I mourn for Andrea, Jo, Susan, Modmom, J, Julia, Katie, Jen, Lisa, Manda, Amber, Renee, Sue, RivkA, others whose names I do not know and for Marianne, who I knew personally.  All of these women left before they were ready.  They were pathfinders.  Their journeys, and their passing, never leaves my awareness as so many of us work to get the word out about screening, diagnosis, and the research that will create a future without breast cancer.

    I am in appreciating of the women who are still here, doing what they can, working to help women get diagnosed, cope with treatment, and survive.  I am grateful to my friend Valerie, an IBC survivor who continues to push for more and better research about IBC.  Vicki Tashman, founder of PinkLink, is providing resources for a healthy survivorship and support for the newly diagnosed. There are many others.  I stumble on them during my meanderings on the webs.  They all inspire me.

    My fellow IBC bloggers, many of whom are battling metastatic disease, are relentlessly getting the word out, raising awareness, and coping with cancer with amazing grace and courage.

    I am sorrowful today, and I am committed.  I am part of the Army of Women, literally and figuratively.  Please join us if you have not.  I can believe in a world where my daughter doesn’t have to be a warrior, and needn’t grieve for the wounded and the fallen.

    Goodbye, Elizabeth.  We will miss you.

    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!

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