Thanks for visiting. This site is for anyone facing a cancer diagnosis, recovering from cancer, being treated or caring for someone being treated, and anyone else who needs a lift. I am still here five years after facing Inflammatory Breast Cancer, and life after cancer is different than it was before. It’s actually better, for me. Even with the inconveniences and remnants of my cancer fight, being here on the planet with my family is a blessing I never take for granted.
Comments are welcome, if they have to do with this site. Comments from upset people who have tracked me down from Yahoo to object to my political writing will not be published here! This is my little web sanctuary, offering help and hope to the weary I hope. Nice to see you.
I broke my wrist nearly three weeks ago. It has been quite an education.
About a year ago I became very concerned about the state of my bones. I have a friend who went through menopause at 35, and found out at 45 that she had osteoporosis. I went through menopause at 45, due to chemotherapy. Last year I asked my doctor for a bone scan, because I was concerned. I asked several times for a close look at my results, but was told that they were not significant.
Fast-forward to April 27. I was racing up the stairs to the Canada College Main Stage theater, in a big hurry because I had to braid my daughter’s hair. She was playing Tiger Lily in Peter Pan. I knew she would be stressed because I was late.
I tripped and fell forward landing on the stair. As I broke my fall time stopped, and I observed to my dismay that my wrist was bending in a way was never designed to bend. I knew I have broken it.
The ER department at Kaiser did an excellent job with my wrist. I was in and out in three hours, with my wrist reset and in a splint. One good thing that came out of it was that I asked the ER doctor to look at my bone scan. My suspicions were confirmed. I have osteopenia. Very mild, true, but present all the same.
What I think is cause for concern and what other people think is cause for concern often varies wildly. I love my oncologist. She’s wonderful. However, osteopenia is only relevant as it relates to osteoporosis. Even then, the question she asks is, is it time for Fosamax?
That’s not my perspective!
I decided at that time to take on my osteopenia. I also decided to use everything I know to heal this broken wrist in record time. So far my doctor has been startled by my progress. The cast comes off June 11, six weeks and three days after I broke it.
So what have I learned? Nobody takes your health is seriously as you do. Today’s doctors are wonderful at what they do, but their vision is often limited. My bone doctor. who is excellent at what he does, could only offer “drink milk and don’t move it” as instructions to heal fast. I found many more options than that!
And on the fun side? Using your non dominant hand creates new pathways in the brain. That’s been great for me. My ADD and chemo-affected brain seems to be far more organized, and my research shows that this is no accident. My left handed writing is legible and about as neat as that of a first grader!
I also purchased the Dragon dictation system. That’s how I can write this post even though my right hand is basically useless! I never would have done that if I had broken my wrist. I am finally at work on my first e-book, which has been on the back burner for years. What else is there to do?
When I broke my wrist, my massage therapy practice was in huge growth mode. This interruption was aggravating, but I am making the best of it.
For anyone going through cancer treatment, it is important to know that chemotherapy is rough on your bones. Early menopause also puts you at risk for osteopenia and osteoporosis. When I went through treatment, neither of these was my concern. I just wanted to survive. Looking back, I believe that part of why the treatment my was successful was because I was thinking about the future I was determined to have. I do wish I had known about my bones!
What have you done for your bones today?
Yes, I’m still here! I got caught up in the delicious madness of Narnia. We had a great run. My daughter made me proud, I found new levels of wickedness, and my husband was delightfully typecast as Father Christmas. He always is kid furniture, and for this show he was double kid furniture! Every moment backstage his lap was occupied. A wonderful time was had by all.
In November, I had a revelation. It has given me back my life and my future. It was suggested to me that I have my son evaluated for ADHD. As I went through the process, I was startled to discover that what I was hearing applied to me. I proceeded to get myself evaluated. At the age of 51, I was diagnosed with ADHD. I have had it all my life.
Imagine, the combination of ADHD and chemobrain! No wonder I felt like I couldn’t get any traction! Now I understood why I have spent so much of my life in overwhelm.
I was, strangely, not in overwhelm when I fought cancer. I went into hyperfocus, much the same way I did whey I bicycled the Pacific Coast by myself in 1988. I knew the goal and the path, and I had faith that I would get there. When normal life resumed and I had to juggle many interests and responsibilities, I was overwhelmed.
So, the diagnosis was a revelation. The most amazing part was that I stopped beating myself up for being a flake, undisciplined, and underachiever, blah blah blah.
No one begrudges a slower time running the mile to someone who has one leg shorter than the other. It’s a simple matter of brain chemistry. My frontal lobe doesn’t have enough available dopamine. Exit self judgment, enter partnership with my wildly creative brain. I love my brain. I love how creative and intuitive it is. I just lost some other stuff to have that. So, during December, after I got the formal diagnosis, I began to research. While I was waiting to see the doctor again, I learned all kinds of tricks to work with my brain. It has been extraordinary.
In January I saw the doc and she prescribed Wellbutrin. For me it is a miracle drug. The static in my head is much reduced, and often it’s not there. Instead of everything I have to do feeling equally urgent (prompting me to freeze) I know how to decide what comes first.
My original intention was to try medication so I could feel what a more functional frontal lobe feels like. After researching Wellbutrin, I found to my relief that it actually has some other benefits that feel good to me. Preliminary research in mice suggests that it may have cancer preventative properties, because it reduces inflammation. It’s all good. We’ll see.
Right now I am catching up on all the balls I have dropped in the last five years. Woo-Hoo!
If you have left a comment recently, please forgive me. I will moderate soon. I have some spam to sift through. Aaaargh!
Happy New Year!
Well, here it is. Breast Cancer Awareness Month. Fortunately I am very, very busy, rehearsing for Narnia. Yes, I am the White Witch again! Five years ago, I was rehearsing. My daughter was 7. Now she’s 13, and playing the part of Susan. My husband, who I had just met in 2007, is playing Father Christmas. Five years ago I was a lot skinnier. My husband says I was scrawny. I was sporting the Annie Lennox look.
Breast Cancer Awareness month is hard. While I so appreciate the funds that are raised for research, I detest the sea of pink and the pink labels on things so people will buy. It’s the good and the greedy all mixed together. My daughter confessed that she hates it as well. All during the month of October, she is reminded that she could have lost her mother. Two women on my support list announced that they are stopping treatment this week. It’s hard.
All the dancing, writing, driving, working, has made my muscles sore. I am sore on my right side, and I noticed it just below my ribcage on the right side. I began to worry about liver mets. That happens every so often. An ache or a zing of some kind, and I worry. Someone on the list had a recurrence 6 years out. I don’t like hearing those stories.
I stretch, I take care of myself, I watch the aches and pains, but mostly right now I’m having a blast. It’s family theater. The cuteness factor is extremely high, with little woodland fairies, animals, and cruelies, who are the witch’s minions. I have the most delightful little dwarf, my personal henchman, a ten year old named Amy. The adults in the show are there to do something magical with their kids. I appreciate all of them so much!
If you want to see some great theater (really! We have fabulous talent directing this year), go to www.bayareaetc.org and get tickets to see the “Wardrobe” cast. We perform Friday night November 2, Sunday Matinee on the 4th, and Saturday November 10.
When I started this blog, I came to know several other survivors in the blogospere. It is painful to me this October that they are all gone, all but one. At least the ones I knew well. I know it’s not because none of us survive. I know for myself that moving away from life being about cancer and into the next chapter tempts us to forget that people need to know we’re here. Many who make it get quieter, as life resumes. I have done that many times.
For those at the beginning, know that I am one of many. It has been over five years. I’m still here. At the moment, cackling madly, turning little children to stone, singing fantastic music, and sharing the stage with my beautiful teenage daughter.
Now, to bed.
Tomorrow is the audition workshop for the next eTc Mainstage show, Narnia.
Five years ago, skinny and rockin’ the Annie Lennox look (super short hair), I worked out my angst on stage singing amazing music, turning little kids into stone, and cackling madly. A week from tomorrow I will audition to reprise my breakout role as the White Witch of Narnia. I can’t wait!
The last time I played the White Witch, I was scrawny and exhausted from radiation treatments. It was still an absolute gas. My daughter will accuse me of being cocky, but I’m confident that I’ve got a pretty straight shot to do it again. This time I am not scrawny (alas, I could be a little scrawnier!) and I am tired from momming and working, but it’s a nicer kind of tired. I can work with this kind of tired. Pacing can be done!
Time to choose a song and a monologue…
A plague on stupid people with big mouths! Is it my imagination, folks, or do people with cancer just have “advise me!” signs on their backs?
I am on vacation at the beach in Yachats, Oregon. We were enjoying the local farmer’s market, and I overheard a man telling someone, “yes, people often get better results if they fast during chemotherapy” OMG. I had to stop and see what the deal was.
This vendor was telling a woman whose husband has Stage 4 esophageal cancer that her husband should fast. I wish I had gotten more upset. I was polite, so the man did not get what an absolute jerk he was being. Not only was that clueless, it was bad, destructive advice. Where do people get the idea that they’re qualified to give medical advice?
I wish I had thought of what my husband said.
“oh, did that work for you when you were on chemotherapy?” I wish I had thought to say this.
I spent quite a fair bit of time talking with the woman. She was really happy to talk with me. Cancer is such a lonely journey sometimes. Her husband can barely hold down water on a good day.
Chemotherapy is so rough on a person. Food in the belly and strength is necessary to stay on track. An empty stomach is a guarantee of worse side effects. Very few cancer patients can afford to lose weight. Getting food from the plate and into the belly of a cancer patient is hard enough.
This beanhead didn’t even have the grace to be sheepish or embarrassed.
I’m sure he meant well. I just don’t understand why people think it’s cool to give advice to cancer patients. What is it about this disease that invites potshot expertise? I just don’t get it.
When I was being treated for Inflammatory Breast Cancer, I had friends telling me emphatically that I should use complementary medicine exclusively, and another telling me that soy shakes could save my breast. That person is no longer my friend, and it makes me sad. Such advice was rubbing salt in my wounds, dangling my dearest wish before me in the most painful way. If I had heeded any of their advice I would be dead today.
My best friend figured out that she had been in the wrong and sent me a wonderful card, and remained my staunch supported through the rest of it. She admitted that she just didn’t want to see me suffer through those horrendous treatments. The problem is that I had no choice.
When you have to take a nasty pill, others telling you that you should not take it and take something else instead is not helpful.
For those of us in the trenches, we have to learn to tune out well meaning but foolish people.
My rant must end now. My children want me off the computer. I just knew I would feel better after I got this one off my chest.
Back to being on vacation…
Okay, so you’re starting chemo. It was more than five years ago for me, but I still remember. Here’s what I wish someone had told me:
This one is the hardest, because it’s unknown. Once this one is over, you will feel so much better, because you will know what to expect for the next ones. Each one will be a little harder than the last, because the effects are cumulative. The good news is that typically they don’t change. You’ll get a sense of how it goes after this one. I was vastly relieved that I didn’t turn green or blow up. That’s the irrational fear, isn’t it? The good news is that these folks really know what they’re doing. They’ve been doing it for a long time and they have it down to a science. You are in very good hands.
It’s great to have a buddy who’s been there. It’s not really helpful to know all the side effects that could happen, because many of them wont, or they wont be severe, or they will and you’ll deal with it then. If you have a buddy who’s been there, you can call her up and say “I feel like …..is that normal?” and get some reassurance. You probably at some point may need to whine a little. That’s totally ok. After a couple of days, it starts to lift, and you get to feel normal until the next one. My buddy told me that a Coca-cola would help me with nausea, and it did. Unfortunately I still associate Coke with comfort, alas!
Your body may feel strange to you. That’s normal. This is something new. Chemotherapy cured me of my panic attacks. I was experiencing a racy feeling that I knew were the steroids. I knew it was chemically induced, so I didn’t panic. No panic attacks since!
Please, take all the medications they give you to keep you comfortable. A stressed body does not have the resilience to cope as well as a comfortable, rested body. Stay comfortable!
Do you have people to take care of you? Do you have help? Do you have plenty of comfort items available to ride out those possibly uncomfortable few days? Show yourself how much you love you, by tending to your needs the way you would your dearest friend or your child.
Here are my notes on side effects, for my friend on TAC:
Either the Adriamycin or the Cytoxan is a bladder irritant. Cranberry juice really helps. Have some around!
I was terrified of the neuropathy that happens with Taxol. I’m a massage therapist and neuropathy was just too horrible to contemplate. I asked my oncologist’s assistance in desperation if there was any way to avoid it, and she told me that L-glutamine in mega-doses was helpful for some people. I found some powder that provided a gram per spoonful, and chugged it in water for 10 grams a day. My neuropathy was minimal, and not lasting. Talk to your doctor about this. I took 10 grams of L-glutamine for the five days around my infusion, and two grams a day for the rest of the time I was on Taxol.
Get some funny movies, and keep your sense of humor! Laughing is good for you white blood cells. You may even get to cut back on the neulasta shots, as I did.
Oh yes, don’t forget the Biotene! Magic mouthwash for sensitive mouths, keeps mouth sores at bay. Use liberally.
Be proactive. At the first sign of any form of discomfort, head it off by taking amazing care of yourself!
You can ride this wave, sister. Let nothing be more important than your self care, nothing. Side effects are worse with stress. Be good to you and know that you are on my heart. Sending you love this Wednesday.
I have been in the middle of a five year crisis. I got a little off track. Fortunately, not far, just a little. I have course-corrected and I feel excited about life again.
When I faced IBC in 2007, I felt deep in my bones that I would be all right. This wasn’t even logical, which fortunately I didn’t know. I just felt intuitively that the path to my survival was the path of total congruence. This is a loaded word for me. It means integrity, and by this I mean true. My life had to be the truest, more joyful expression of me that I could make it, or I wouldn’t make it. I felt deeply that I had to uncover all the joy in my life that I had been putting off until it was my time. In February of 2007, I knew that I might not get any more time. I had to make every piece of my world a reflection of what mattered to me. It was not only what I wanted to do, but it was what I had to do to get well.
As I emerged from chemotherapy and surgery, I was back into my creativity full swing after having let it sleep for decades. I started making art, and had an art show at the Healing Store at the hospital where I was working. Some people bought prints. It was exhilarating.
As I began my radiation treatments, I felt called to the stage after a 20 year absence. My daughter was doing theater that summer, and I found out that the main stage show was going to be “Narnia”. Waves of joy flooded through me and I knew I had to play the White Witch. It was glorious. The music was glorious, cackling and turning little children into stone was glorious, finding that my voice had continued to develop and mature without me paying an attention to it was glorious.
Being fully self-expressed was my lifeline. I developed boundaries, much to the dismay of my children. I decided that if it wasn’t fun, if it didn’t make me happy, I wasn’t doing it. Most of all this applied to work.
As the terror receded into the past, I began to realize that my commitment to self expression had waned as well. Hence, the crisis. I wasn’t bouncing out of bed happy to be alive as I did back then, just after being plucked from the lion’s jaws. In 2008, I was so happy every day that choosing the path to joy was easy.
What if from the very beginning, each of us learned to express ourselves truthfully in every area of our lives? Would we even get sick? When I got sick, I hadn’t felt much but resignation and stress for a long time. I was a burnt-out massage therapist recovering from a soul-killing marriage and ugly divorce, with two hurting children. I didn’t see any light at the end of this dark tunnel.
When I was told “you have cancer”, I knew I had to find it or die.
Lately I’ve been busy writing, working at the children’s hospital, seeing private clients, and looking for the opportunities I may have been missing to be wildly creative. The book got back-burner’d for a little while as I stretched my freelancing muscles for paying clients, including some web pages for a silicon valley consulting company. Bay Area e.T.c. is doing “Narnia” again, and now my daughter is an accomplished thespian who could shine in any role she gets. She will audition for the part of Susan, and I am preparing to bring an older, wiser, slightly rounder, certainly more energetic White Witch to the stage. My husband is even planning to get in on the fun.
A woman’s gotta do what a woman’s gotta do. What is it that you gotta do?
Thanks all who took my survey, thank you thank you!
I have been noodling over the book, and got bogged down in how long it got. I put that one on the back burner, and what wants to be on the front burner is this one:
Vitality from the Inside Out: 9 steps to personal congruence
Why congruence? Because this is what I instinctively did when I received my diagnosis in 2007. I knew that I had to get 100% of me behind staying alive and thriving past my diagnosis. I wanted to raise my children. I knew that only a life that I was really excited about would be worth the fight I had in front of me. So, I set out to heal my whole life. I was seeking congruence.
This is a word that’s been at the heart of my value system for a long, long time. It feels great to name it and look at the future through that lens. This first e-book will get my toes in the waters of e-book and internet land. Then, I’ll write some more.
I have a few titles in mind to help my sisters who are entering Planet Cancer, and for their families. I wish I could snap my fingers and write them all at once, and have them ready tomorrow!
My son made a powerful observation about Maurice Sendak and Dr. Seuss. I commented that both of these children’s authors lived long, productive lives. My boy quipped, “that’s because their lives were full of peace and purpose”. What a kid. Pretty world smart for a boy of nearly 15.
Peace and purpose is what a congruent life looks like.
I am working on an e-book, with the needs of the newly diagnosed in mind. Will you help me come up with the right stuff?
I can now approach my comments without terror, no longer having to sift through miles of spam to get to what my readers are really saying! Wow!
I confess, I am a computer moron. I am a dinosaur from another era, from the generation where there were geeks (who later went on to earn insane amounts of money) and the rest of us. In high school I remember being told by one of these geeks that the day would come when I would swipe a card at the grocery store and the funds would come from my bank account right then and there. I scoffed.
Now, we all have to use the computer or flail helplessly in the modern world. Facebook overwhelms me. Trying to set up a captcha made me want to take a nap.
Enter Strata…my computer goddess to the rescue!
Now I can do what I do, because she does what she does and will teach me how to keep it going. With my creative sparks free to fly, released from their technological drudgery and confusion, I can create this site to be what I want it to be.
Are You With Us?
- Elizabeth on What to Know Before Your First Chemotherapy Session
- Sheila Warren on What to Know Before Your First Chemotherapy Session
- Aunt Darlene on When everyone is an expert and they haven’t a clue
- Lisa Wucher on Appreciating My Teenagers
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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 directly to fund my continuing advocacy and for breast cancer research, particularly directed towards Deadline 2020 for the end of breast cancer. Blessings, Elizabeth
The book I drew strength from all the way through
My reprogramming goddess, Belleruth Naparstek
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