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 six 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.
This is my little web sanctuary, offering help and hope to the weary I hope. Nice to see you.
This month is a milestone. It just crashed into my awareness on Sunday, as I was taking my daughter and her friend shopping. We were driving along, and saw a man on a bicycle with a little trailer behind him. There was a dog in it, and the sight was just so funny! We pulled up next to him to get a picture. Alas, my daughter has not sent it to me yet. I will post it when she does!
The man gave us a big grin. The man gave us a big grin.As we were having a good laugh, I had one of those “high on life” moments I get every so often. I get them a lot more these last seven years than I used to before that. I think I took everything far too seriously. What happened in 2007 was serious. Very little after that has been!
Seven years from tomorrow, I received the diagnosis of Stage IIIC Inflammatory Breast Cancer. My first thought was for my children. I was determined to see them grow up. I have done that, and what a wild ride it’s been! They drive me absolutely nuts many days, and I treasure it all.
The hard lesson that cancer taught me was to put myself FIRST. That goes against everything most of us were taught, especially people my age, the baby boomers. I’m right on the tail end of that wave. I remember June Cleaver and all those nice ladies who took care of everybody. I remember the Enjoli commercials.
“I can bring home the bacon, fry it up in the pan, and never never let you forget you’re a man!”
Oh good grief! Puh-LEASE! Nobody can do that and have any juice left. I call BS.
Self care is sexy! It means that I approach life on full, not on empty. I am convinced that I am alive today because I got the message. Not only am I alive, but I have a really good laugh most days, and I don’t sweat the small stuff. I do hope you’ll indulge a little motherly pride, as I post pictures of the offspring I was determined to raise. They are feisty, demented, gifted, amazing teenagers with larger than life attitude, and I wouldn’t have missed this for the world!
What always comes up when I feel full to overflowing like this is the continued commitment to giving back. I am deeply grateful for the opportunities I have to do this.
I just set up a new website for massage therapists, because I feel so blessed to have been doing this work for the last 23 years. I also know that massage therapists and other healers tend to give and give, as I did. I have a very different viewpoint now! You can check it out at www.thriving massagetherapist.com.
Every year as October approaches, I feel the thrill of autumn and the dread of Pinktober.
It’s not that I don’t value all the work that goes into raising funds for breast cancer awareness and research. I won’t bore you with yet another rant on this topic! Anyone who has checked into this blog periodically knows how irate Pinkwashing and retail opportunism in the name of charity makes me.
The fact is, I always have mixed feelings during this month. I am thrilled to be alive, and sad for my sisters who aren’t. It is annoying and inconvenient to be constantly reminded of breast cancer when most of the time I don’t think about it too much any more. It is not the center of my world, and that’s how we all want it. For women who face breast cancer, for a long time we can hardly think of anything else. For the unfortunate ones who have disease progression instead of successful first treatment, it is always top of mind. For women who have recurrences it is top of mind. For those of us fortunate enough to be NED, we can blessedly enjoy a day, a week, or a month without thinking about breast cancer.
Not so during October. My daughter put it succinctly. “Most of the time I don’t have to remember that my mom almost died!”
If there is anything I can accomplish during this month, it is to gently and persistently tell the true story of breast cancer, so people like my mom who are terrified for loved ones don’t hear “Breast cancer? Don’t worry, she’ll be fine. They cure that now.”. That was pretty tough for her to hear while I battled a disease that statistically was more likely to kill me than not. It makes for a lonely journey.
I am relieved that I don’t have to deal with the clerks at my local Safeway when I opt out of the “donate to breast cancer” option as I check out my groceries. I don’t participate because last year I asked a clerk where that money went, she had no idea. Neither did the manager.
I donate year round, to organizations that give money to funding research, so we can have a world where my daughter doesn’t have to be afraid.
Last week, one of my massage therapy clients was diagnosed with breast cancer. She is terrified, as we all are when it happens to us. I suspect that October will be a little extra rough for her in years to come.
I’m so glad November is around the corner! My birthday is in a few days. I’m so glad it is not mixed in with Pinktober! I can still love autumn when November comes. I’ll be 52. Damn pleased to be 52! When I was 45 I wasn’t sure at all that it would happen.
As the years pass, I am embracing who I have always been, a wellness professional. For awhile I almost felt that I couldn’t claim that anymore, because I had faced cancer. I, who was the picture of health and good habits…how could it be? I know so much more now.
Now I know that no one is exempt, no matter how “right” they do everything. I am true to my profession because I used everything I know to beat it.
You can check out my new website here. I will never stop caring about the women who face breast cancer, or the people who face any cancer. I see it every week when I go to work at the hospital. I see it in the mirror when I look at my chest. And, I am committed more than ever to health and healing in the forms I know best.
I got a note from a reader that one of my links was broken. I had a feeling, and I resisted figuring it out. Why?
Because several of my links are blogs, and the authors are gone. Some links still take readers to their websites, but the posts are old. I just checked my friend Donna’s site. A sweet message from her husband, about how much he misses her. I miss her too.
Following up on some other blogs, I notice that many of us sort of disappear after we get through the ordeal. That is, unless it isn’t over. Some of us fight cancer once, and we go one with our lives. We don’t like looking back, for the most part. I told myself I wouldn’t disappear, but I do sometimes, for weeks or months at a time. It’s to be expected. Life stops being about cancer, and that’s what we fought for, yes?
And, I remember my friends. Rachel at the Cancer Culture Chronicles. Gone. Susan at Toddler Planet. I just made a donation recently to the Inflammatory Breast Cancer Research Foundation in her name. That organization is run by a 20+ year survivor, who says simply, “I figure I’m still on this side of the grass, so I need to do what I can”. I feel that way too.
My friend in New Zealand, gone. She and Susan died last summer, within days of each other.
It can be hard to keep showing up here in cyberspace, when life is all about enjoying it. Simple, but true. My teenagers are both taller than I am, and that was the future I prayed for when I was fighting in 2007. Life is good. I figure, I have been given the gift, and my job is to be happy. That’s what the Dalai Lama says, and I agree.
My job is to be happy, and remember my sisters who have left. I appreciate every moment I have, so much. I got to see my kids grow up. I am blessed indeed.
If you have found this blog, please don’t take the silence in cyberspace for lack of survivors. We are here. We’re just kinda quiet, despite our best intentions to stay visible. It’s been six years now for me.
Thanks Olivia, for letting me know I had some housekeeping to do. Nice to be here. Really, so great.
My cast is coming off on June 11. It will be exactly 6 weeks and three days from when I injured it. If the doctor’s office was open on the weekend I might’ve made it six weeks to the day!
I decided when I injured it that I would be derailed for a short time as possible. Unfortunately, when you ask a doctor how to make it heal quickly all he usually have tell you is drink your milk and keep it immobilized. Not satisfied with that, I went online and did my research.
I learned that anti-inflammatories during the first week are counterproductive, because the inflammation response is part of the healing process. So, I took Tylenol instead, and got to work on my guided imagery. I have a whole crew of the little osteognomes in there, bridging the gap across the fracture, wielding huge knitting needles.
After the first week, the doctor was pleased and startled by how fast healing was underway, but dismayed that it had moved out of position just a little bit. He wanted to discuss surgery. I decided that those booms were going to move back where they belonged.
After a week of pulling my fingers, tapping on the bone where it wanted to move, supplementing with calcium, magnesium, and vitamin D, and lots of fresh food and rest, my doctor was startled again.
He thought perhaps that my wrist was aligned properly because the x-ray was taken at a different angle. I told him, “No I did that!”
That was May 14. We ditched the splint, put on a coolerriffic purple cast that lets me bend at the elbow, and he told me he’d see me in four weeks to have the cast removed. Woo hoo!
There is always more to a healing story than the doctors tell you. It felt great to take charge of my recovery. I’ll be back in business in less than three weeks.
17 days and counting!
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.
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
- Elizabeth on This Just In! Free housecleaning for cancer patients
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