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 [...]
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 [...]
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.
Just Call me Mom By: Heather Von St. James On November 21, 2005 I was not only a new mother to a 3-½ year old baby girl, but also a cancer patient. A million things were going through my mind. In particular, who was going to care for Lily?? Thankfully I come from a wonderful [...]
Just Call me Mom
By: Heather Von St. James
On November 21, 2005 I was not only a new mother to a 3-½ year old baby girl, but also a cancer patient. A million things were going through my mind. In particular, who was going to care for Lily?? Thankfully I come from a wonderful family and my amazing parents came to my rescue. They live some 600 miles away from us, but as soon as we asked them to come, they got in their car and drove out to be with us. My sister and brother in law also came to help and together we all made decisions as a family.
One decision we all made together was to have Lily live with my parents in their home, while my husband Carmen and I went to Boston to figure out how to save my life. My surgery was scheduled February 2, 2006. My mom flew out to Minneapolis the week before my surgery to help us prepare, then she and Lily were going to fly to her home the same day Cameron and I flew to Boston for the next step of my crazy journey.
The X-ray showed a liter of fluid around my lung. I was sent to see a thoracic specialist to have the fluid drained and to figure out what was causing it. The A.C.T scan showed a mass in the lower left portion of my left lung. I was immediately scheduled a biopsy for the following morning. The results showed that I had malignant pleural mesothelioma, a rare cancer caused from asbestos exposure.
In a matter of seconds our world came crashing down around us. How could this be? We just had a baby; this was supposed to be the happiest time in our lives. How could I have a cancer diagnosis? We went from the highest of highs to the lowest of lows in a matter of months.
We were given a few different options for treatment, the most radical being the route we chose. I was scheduled to see a Dr. David Sugarbaker, the worlds leading specialist on this disease. In order to save my life and raise my baby, Boston was the only option for us. I was a candidate for a risky, but groundbreaking surgery called an Extrapleural Pneumonectomy, which included an inter-operative heated chemotherapy.
My surgery started at 7:30 a.m. on the 2nd, which turned into a 71/2-hour procedure that luckily had very few complications. I was in the hospital a grand total of 18 days. Everyday my husband would check my e-mail for pictures that my mom would send of Lily’s adventures with her grandparents. He would print off 5 or so photos a day in black and white, this is how I saw my baby’s 6th month of her life through grainy pictures. However, she gave me the strength and determination to get through each day. Lily was the reason I had to get home!
I left Boston on March 2nd, one month to the day of my surgery. I lived with my parents for 2 more months because there was no way I could take care of Lily on my own. As I grew stronger and recovered Lily and I got to know each other again. She had to remember that I was mommy! Through all of this, Lily and my parents still have such an amazing bond together. I pray that this is something that last for life. Finally I was able to care for both my daughter and myself. I moved back to the Twin Cities at the beginning of May to reunite my family. I beat the unbeatable. Just call me mom.
P.S. by Elizabeth
I asked Heather what she attributed her successful outcome to. She answered unequivocally that the desire to see her child grow up was hugely motivating. I also was struck when reading this post by the fact that EVERYTHING went on hold in order to fight. Sometimes it’s hard to say no to everything else while saying yes to life, as loudly as it can be said, shouted even. Lily missed some months, but she got her mom.
Thanks Heather, for an inspiring story! For more information on mesothelioma, go to mesothelioma.com.
Fragile, Handle with Care, NOT! What a glorious thing to go backpacking and discover that the post-cancer me is not as fragile and weak as I thought! I guess it’s the fond memories of my childhood that translates into the satisfaction of “being a trooper”, which was my Dad’s way of describing someone who rolls [...]
Fragile, Handle with Care, NOT!
What a glorious thing to go backpacking and discover that the post-cancer me is not as fragile and weak as I thought! I guess it’s the fond memories of my childhood that translates into the satisfaction of “being a trooper”, which was my Dad’s way of describing someone who rolls with the punches. Do you remember getting so grubby and scraped up that it took a long shower and lots of scrubbing to determine what was dirt and what was scrapes and bruises? The delicious feeling of a well earned sunburn that brings to mind a satisfying day outside? Maybe I’m nuts, but the feeling of being a little beat up but happy makes me feel sturdy and alive.
I met my dear friend Susan at her home on Friday, and we were immediately derailed by a late bus (to bring my godson Victor home). Nothing daunted, we drove to fetch him on the way. We were quite delayed then getting to our destination, but we were determined to get up into the mountains that very night, dark or no. Fortunately Susan’s brother Frank, nephew Ben, and another friend (new brother) Paul were already there.
I had some trepidation about this trip. What if… what if….. what if I overwork my chemo-d heart? What if my arm swells up? What if we get lost? What if my brainfog makes me forget something important? Blah blah blah, off my brain went, but my tendency to blast forward no matter what won out, and I’m so glad.
When I put the backpack on, I was oh, so discouraged. I was out of breath within the first 10 yards, no kidding. The straps cut into my shoulders. My heart was racing. I needed the trek pole that Susan had provided. We were at 6,500 feet, and I was not ready.
Nonetheless, I know the only way out is through, so one foot in front of the other with frequent rests ultimately got us there. And was it ever worth it! The trek there was beautiful. It was only 3 miles, not too tough terrain, only a couple of hills, so for all my woes it was manageable.
We spent Friday and Saturday night there. We had one whole day of nothing at all, just hanging out, visiting, exploring the magic of the place. Susan calls it Camp Medicine Wheel because there is a mountain at the compass points to the West, North and East. We entered camp roughly from the south. We camped next to a river, which lulled us to sleep each night. On Saturday, a thunder storm surrounded us on three sides, while the sky above us remained clear. It was nothing less than heaven.
I did make a couple of relevant discoveries for cancer survivors who backpack. I was diligent about my “Alaska perfume” (bug spray), but my left arm was covered by a sleeve all of the time so I didn’t spray it. When I went to bed, I took the sleeve off. Alas, forgot to spray! After that, my friends called me Lumpy.
It was so gratifying to hike back to the trail head with plenty of energy, having become accustomed to the altitude (and having eaten a lot of the food we carried up!), with a chipped tooth, lumpy arm, burns on both hands, lots of sunburn and bruises, and an ear-to-ear grin. No, not fragile. What a relief!
Sunday ended perfectly, with a stop in Angel’s Camp to look at rocks (there’s an unbelievable store there) and a chance to drum. We actually stumbled upon a weekly open drum circle.
I wonder if other survivors doubt their resilience after being beat up by cancer and the treatments we have to take to conquer it. Anybody? What about folks still in treatment?
I know that when I was on chemotherapy it felt good to push myself a little, to walk to my radiation treatments, to do yoga, to find the edge. I had just forgotten. This weekend was a much needed, very therapeutic reminder.
Planning the next one….
Wow, has it really been over a month since I posted?!!! I’m shocked! I guess I hit the pause button for awhile. I’m actually full throttle into rebooting my family system. (Really!) I just posted over at Everyday Health about how cancer has affected my family. We are still dealing with it. My son is [...]
Wow, has it really been over a month since I posted?!!! I’m shocked!
I guess I hit the pause button for awhile. I’m actually full throttle into rebooting my family system. (Really!) I just posted over at Everyday Health about how cancer has affected my family. We are still dealing with it. My son is away at a Wilderness Therapy Camp, and we are engaged in doing everything we can to make sure that the courageous work he is doing up there in the Oregon desert is going to stick.
So, I’ve been in Mom mode, guiltily ignoring all the goings-on in the cancer world, to focus on my family. There is a lot going on, lots that I have something to say about. I write long posts in snippets in my head. But alas, there is only one of me, so I have to focus on one thing at a time.
One of my online buddies that I’ve never met has posted about this. I have had it up to my eyeballs with chemo-brain. I am trying to do my Mom thing, do my work, focus on my family, get things done. My family has been deeply affected by Mom fighting for her life in 2007. I am always grateful, every day, that I survived, and am still surviving.
I’m not the same, and sometimes that really pisses me off.
This last weekend I made a mistake at one of my jobs. I wasn’t on top of my game. In the past, I was known as someone who was pretty sharp, had it together. I could hold several big pictures in my mind at once, and fish in my brain for the vast databank of details. A boyfriend of mine used to call me “computerbrain” with great respect. No more.
I lose details. I don’t remember routines that are new. My hands know how to do the things I’ve done for years, but yesterday’s instructions get lost in the muck. I make many more mistakes than I used to. I affirm to myself that I never make the same mistake twice, and mostly that’s true. When I discover that my overloaded hard drive missed something, I create a system externally (like a list, or an alarm on my phone) to make sure I don’t repeat an error. Unfortunately I make errors. Lots of them. This is not like me and I’m struggling with that.
Other people really don’t get it. If I joke about having a mind like a sieve, I’ve heard, “I never had chemotherapy and my brain is like that too”. (Quitcher bitchin’, you’re just a ditz…)…
It’s not the same. It’s frustrating. Other people think I’m a flake. One of my colleagues thought it would be great to make an example of me, so I can feel real bad.
Cancer is the gift that keeps on giving. After you survive it, the treatments you had can give you a new one. Your brain may never recover. Your children grow up before they are supposed to. I feel guilty bitching about it, because I’m alive, which is more than many of my fallen sisters and brothers can say.
It’s not black and white today, it’s gray. I can rejoice that I live, and mourn what I have lost. It’s gone, never to return, and that’s just the way it is. My left arm will not be strong again, my brain will not be sharp again, although both can work very well under the right circumstances.
Tuesday evening I will get on a train and go to Albany Oregon, where I will see my son for the first time in three and a half weeks. He has been in the high desert with three therapists and five other boys. He has cooked for himself, made his own shelter, and explored his hurts bravely. I can’t wait to see him. I am so proud of him.
And while I am feeling guilty for dropping out, I notice that my community is still here, the community of people determined to live well after and in spite of cancer, to help others to do it. I love to see my friend’s comments here. I have a guest post coming, waiting for me to catch up with myself and share another perspective. I’m honored that another cancer warrior wanted to offer her story on these pages. One more inspiring story, coming up!
None of us are alone. If the rest of my world doesn’t understand chemo brain, at least my cancer warrior sisters do. Yes, they do.
After I posted last night, I thought hard about it and then looked up heat rash. This morning it was better. If it was skin mets my calendula cream would do nothing for it! All appears to be well, and I am again so grateful. I never take anything for granted anymore, or try not [...]
After I posted last night, I thought hard about it and then looked up heat rash.
This morning it was better. If it was skin mets my calendula cream would do nothing for it! All appears to be well, and I am again so grateful. I never take anything for granted anymore, or try not to! Sometimes I slip and start to forget just how precious my life is to me. Then another little scare puts it all into perspective.
We all get scared sometimes. It felt good last night to write about it. In fact, the last phrase came out with a simultaneous sigh of comfort. Sometimes just acknowledging what’s so makes it less so. Strange how that works.
I remember one day during chemo, not quite three years ago. It was my third Adriamycin/Cytoxan infusion. It was the weekend. I had chemo on Wednesdays, and Fridays were usually the worst days. Saturdays were a little less bad, and by Sunday I was breathing a sigh of relief that another one was done.
This particular Saturday, I was at my boyfriend’s house. This became our pattern on chemo weekends. I’d just hang there, he’d take care of me, and we did mellow things. On the alternate weekends we both had our kids, and the four of them got along famously. We did mostly normal things (me less vigorously, but we still did) and that helped me remember what normal felt like. I tried to take a nap on this particularly miserable Saturday, and just couldn’t get comfortable. I was overwhelmed by my multiple discomforts. They were more than the sum of their parts. Finally I gave up and came out into the kitchen, where my boyfriend was busy just doing his household things.
I looked at him and started to cry. He was a real trooper that day. He dropped what he was doing and listened to me. I complained that my stomach was queasy, everything hurt, I was desperate to sleep and every time I started to drift I had to pee, because that wretched red devil Adriamycin is a bladder irritant. I spilled it all. I whined. I expressed how tired of it I was and I still had five more to go. He just listened. After I dumped it all out and looked at it, I picked myself up, went back to the bed and went to sleep for awhile. I felt better when I got up later.
Last night when I was in a panic the thought occurred to me to just say it. Just look at it, tell the truth about it, and sit with that. Yes, I was spooked. Yes, this is part of survivorship. After I freaked, then I could face what was scaring me and look at it closely. I found some pictures of heat rash and it sure looked like that to me!
I went to bed last night just as chipper as I could be.
After that awful 3rd A/C infusion, it was not until the following Wednesday morning that I felt human again. Did I mention that I had a sinus infection as well? That the A/C had a nice antibiotic piggyback on top of it? That my head felt like it was going to blow up? What I remember most was the sheer joy of waking up on a spring morning and feeling good. I was so happy I just wandered around the apartment singing at the top of my lungs for happiness. I must have kept it up for at least an hour. Mozart, Faure, Puccini, smatterings of my favorite operas and show tunes, reveling in the high notes, drawing in great breaths of life.
I feel a little bit like that today.
And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I [...]
And for Linda, and for Pat, and others who have asked. It’s so hard to know where to start with Complementary Therapies! My first thought when I was diagnosed was that I would use all the big guns my oncologist recommended, and all the big guns from the Complementary Therapies arsenal. At the time I was diagnosed, I had been a full time professional Massage Therapist for nearly 20 years. I knew all about complementary therapies, but I had been neglecting myself, badly. I wasn’t just a wounded healer. I had been limping for a long time. I had just emerged from an awful divorce, huge work stress (the hospital where I worked was downsizing, and the pressure was on!), and my children were suffering. They were 7 and 9. I knew something had to give, but I didn’t really know how to get out of the quicksand I was in.
When I got the diagnosis, I knew I had to fight and fight hard. I decided that I had an opportunity to heal my whole life, and that embracing that task would give me the best chance to survive. I sought healing of body, mind and spirit, and most importantly to mend the rifts between them. The word “congruence” was my operative word, and still is. So, my take on complementary therapies is really an approach rather than just a list of modalities. having said that, I pretty much used them all!
My practices for myself:
1. Say “yes” when anyone offered help. Accept with gratitude. Believe that I deserved the help and that giving it was a blessing to the ones who offered.
2. Put myself first, for the first time ever in my life, no matter who it upset. I was fighting for my life, and I knew it. A total stranger told me to do this, and I believed her.
3. Actively and deliberately sought my own happiness. It took awhile to figure out what that looked like.
4. Made a decision to stop beating myself up, period. Nothing was gained by my perfectionism, and I was beating myself down. Now I question my tendency to self blame, and if I find something that needs to change, I take note and move on.
I had to rely on #1 a lot, because I was not in a financial position to pay for everything I received. Still, I accepted it, and it all helped, more than the sum of it’s parts. Here’s my list:
1. Massage Therapy. I received a massage once a week while I was receiving chemotherapy. My colleagues at the hospital did this for me voluntarily, on their own time. I will always be deeply grateful for this.
2. Healing Touch. I received this through a Stanford University study called Healing Partners. I received one session per week for six months.
3. Acupuncture. My mom offered to pay for this because she knew it would help. I was a struggling single mom when I went on this journey so I did not have the funds to do this. I received acupuncture once every two weeks.
4. Guided Imagery. I believe this had a huge impact on my treatment. I used it to keep my blood cell counts up, to maximize the effectiveness of my treatments, and for healing after the treatments were over. I’ve already written a short article about that on the pages for Complementary Therapies. Excellent Guided Imagery CD’s and MP3 downloads are available from Health Journeys.
5. Support: I went to an Art and Imagery support group. This was a combination of Guided Imagery and using art therapeutically. It was very helpful. That program closed at the hospital and I really miss it. I also found my Caringbridge site to be a huge source of support.
6. Counseling. Fortunately for me, this was available through California Cancer Care where I received my treatments.
7. Laughter! I didn’t do “laughter therapy” (whatever that is…I haven’t tried Laughter Yoga but I have a friend who’s into it and loves it) but at the time I was diagnosed I had been attending a comedy improv class every week, and I made sure to continue. I timed my chemotherapy so I would be up for my class, and I didn’t miss a single one! Even after my surgery, I couldn’t play, but I could watch. I’m convinced that laughing my head off every week was very good for me.
8. Exercise is very important! I took advantage of the “Living Strong, Living Well” program at my local YMCA and did weights, cardiovascular exercise, and whatever else seemed like fun. I also did yoga at home, and some chi gong. I had a couple of videos and they worked well for me. I have a chi gong video that offers a 10 minute sequence for cleansing, called simply “chi gong for cleansing”. I am convinced that my complete recovery from surgery with my range of motion intact is because I did yoga.
9. Nutrition: My doctor told me, “Eat what looks good to you”. I wanted to be a martinet about what I ate, but I had decided to accept all help so I indulged in comfort food when it was offered. What I did do is create a smoothie that covered all the bases, and I had that every day during chemotherapy. Now I’m a bit more careful, but not super strict. I find the information on “Food for Breast Cancer” useful and I read the research they publish.
10. Cultivate hope, actively. I read everything I could get my hands on about recovering. The book “Remarkable Recovery” was my constant companion. I read the stories over and over, especially if I was feeling worn out by it all. The gist of what I got from it was that beating the odds was about doing it how you do it best, and it’s different for all of us.
11. Self expression and creativity. Everybody has her own way to do this. I found blogging, and loved it. I also got tons of support online, which was a huge help. I picked up a paint brush for the first time in 20 years or so. As I went through radiation, I was also rehearsing for a musical, again for the first time in 20 years. For you it may not be this sort of stuff, it may be something else, but whatever it is, it makes your spirit hum! If you’ve forgotten what that is, it’s time to discover it again!
12. Prayer. Whenever anyone offered to pray for me, I said yes, by all means please do! Acknowledging that my life was worth praying for, and allowing total strangers to pray for me (I was on a ton of prayer lists) was an important act of self love. There is research that supports the effectiveness of prayer, and I believe deeply that true self love sets all kinds of positive cellular happenings in motion.
13. Substitute “Feel Everything” for “stay positive”. I heard that stay positive stuff all the time from well meaning people. Being a Pollyanna does not help. Neither does denial. What does help is honoring what you feel, give it expression, and keep things moving. I didn’t elevate my lousy mood by pretending I didn’t have it. I blogged, “feel like crap, going to bed” and then later absorbed the messages of hope from my friends on my guestbook. I cried my way through a few infusions, and then felt better. After I cried I could make art or settle into my warm bed with some hot chocolate. Everything is allowed!
There’s my first stab at it ladies, for my dear IBC sisters and anyone else this may help. If you have any questions about what’s here so far, or want me to elaborate some more, please send me an email at email@example.com. What you tell me you want is what will be in Part Two. In the meantime, I am sleuthing out links and resources.
I hope this helps!
We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite. My last blog on Everyday Health generated comments [...]
We lost one on the list today. One of my IBC sisters could not stop the relentless forward march of this stinkin’ lousy disease. No matter what was thrown at the beast, it just kept on keepin’ on until it’s host could fight no more. Stupid parasite.
My last blog on Everyday Health generated comments from two survivors, one of 12 years, and one of five years. The five year survivor had story similar to what I posted yesterday. Still here, backwards treatment and all!
We need to know you’re out there, survivors!
I had a great day today. I gave a massage, did theater with some kids, and then went to the childrens hospital. Now my husband and my son are bugging me to get off the computer and go watch “V” with them. Life is good.
Everybody deserved a life that makes her as happy as mine does me. Let’s make it happen by 2020.
I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007. The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had [...]
I was about business as usual today, having to do with my offspring. Discussing what they had experienced, I shared that I had faced IBC in 2007.
The woman I was talking to said, “I had that”. Whoa! She was sitting across from me behind a desk, looking just as fine as you please, had it in 1995. She didn’t want me to take her picture or make a fuss. She was not into a fuss thanks, got stuff to do.
What’s amazing about her story is that she’s alive, and the doctors who treated her botched it one way after another. She was diagnosed Stage IIIC IBC not before, but AFTER 2 botched surgeries where they took the wrong part of the breast! The third surgery yielded the proper diagnosis, MRM, only one breast, not bilateral because “we don’t do that”. Lots of dreadful chemo after (yes, after!) the surgery, which did not include herceptin of course because even though her cancer was Her2+ herceptin did not exist. Then, she did not get radiation either!
Yikes! And there she is, cool as a cucumber, telling me about it!
Go figure. Sometimes the best care in the world does not do what we want it to, sometimes the worst in the world doesn’t stop us from conquering. The happy medium is that these days, when women and doctors know more than they have ever before, and patients are full on players in their own story, more and more of us are going to beat it and get on with it, and decide for ourselves whether “making a fuss” is useful or not.
So much for statistics, prognosis, or any other attempt to predict the outcome of anything!
I guess what this reinforces for me is that always, always, anything is possible.
I continue to make a big fuss, to help keep things moving forward in the right direction as much as I can, for all of those who can’t.
My 15 year IBC survivor friend is quietly doing a whole world of good where she is. She is impacting the next generation, and I’m so glad that she’s still around, doing what she’s doing. She is someone I will run into frequently in my everyday life. Now every time I see her I have another reason to smile, and smile big.
Today was such a good day. In the back of my mind, when I was very sick from the treatments that I was banking on to save my life, I had the thought that at least I would better understand the patients I work with after I get well! Maybe I take this silver lining [...]
Today was such a good day.
In the back of my mind, when I was very sick from the treatments that I was banking on to save my life, I had the thought that at least I would better understand the patients I work with after I get well! Maybe I take this silver lining thing just a bit too far, but it works for me. I have heard more than once that people who find meaning in their illness tend to do better in the long run. I have quite a story I made up about mine, and just because I may have made it up doesn’t mean it isn’t true!
Years ago, I learned a principle from shamans:
“Effectiveness is a measure of truth”. This is a fancy way of saying it’s true if it works!
The meaning that I attached to my cancer was that I was going deeper into my own healing journey so that I could be of greater help and service to others. My cancer gave me the opportunity to clarify what is important to me, and my ability to tolerate more suffering than I ever thought I could taught me that I’m stronger than I ever thought I was.
I learned that expressing my creativity and seeking and making beauty in this world is good for my health, and the love of my friends and family taught me what a difference love and care makes to all of us.
Today I was blessed to walk into a room where an adolescent girl was moaning in distress, and hyperventilating because she was so scared. I was blessed to walk in there because I understood. After I spent a half hour with her she was calm and breathing normally. Her mother appreciated it so much! Every one of my massage therapist colleagues could have made her feel better. Being the one to do it today was a blessing to me because understanding her fear and her suffering made the experience richer for me. I appreciated perhaps more deeply what an impact I had been able to make.
I am blathering. How to express the inexpressible? How to give words to the satisfaction of giving comfort after having needed comfort deeply? Now I understand better what my friends received from tending to me, while I feel also that I am deeply in their debt.
I do remember what a ray of hope it was to have someone speak to me who had been through the same ordeal I was facing. Remembering this, I shared with a fuzzy headed young man recovering from a stem cell transplant that I had faced cancer. He was wildly curious about it. His mother was too. She was especially impressed by the thick knot of hair that I had in a gazillion clips to keep it out of my way.
I keep my hair long now, and it’s still growing. I do this because every inch is more distance from my diagnosis, and is representative of the length of my survival. It also has meaning attached to it, given by me. I had a vision once, when my dear friend Deborah was doing her healing work with me, of myself strong, sinewy, older, more wrinkled, with long brownish hair streaked with gray. I decided that this was prophetic. I take comfort in this vision as my hair grows. I am going to be an old, strong lady with lots of hair, full of gray ones that I earned. At least I choose to believe this, and act as if.
As Jean says, acting as if I have control while accepting that I do not.
One thing I do have control of is the story I embrace as my story, and the meaning I attach to it.
Today my story is one of blessings and great healing.
And the day’s end? Painting my daughter’s nails bright pink. Life is grand!
About The LIberation of Persephone/ElizabethElizabeth Danu started this blog to provide a postive and useful resource for people facing cancer and thier loved ones. She is now a ten year survivor of Stage IIIC Inflammatory Breast cancer, enjoying her post-cancer life as a mom, blogger, speaker, wellness consultant and unquenchable optimist. She also sings and performs regularly with her a capella quartet, Curious Blend.
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DO NOT DUPLICATEAll text and art found on these pages belong to Elizabeth Danu, Copyright 2008 - 2014 unless otherwise noted. All rights reserved. Unauthorized use of any material on this site is strictly prohibited. For permission to use anything presented here, please contact me directly. Elizabeth Danu
Disclosure:My intention with this website is to provide an oasis of hope for those facing a fierce diagnosis. Any proceeds from this site go towards building this resource and for breast cancer research, particularly directed towards Deadline 2020 for the end of breast cancer. Blessings, Elizabeth
My bedside companion in 2007
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