Former “Survivor” contestant Jennifer Lyon died on Tuesday night. Breast cancer. She was 37.
And this is exactly why I can work myself into a tizzy about the disease: because very young and otherwise healthy women die from it, and since I’ve had it, and there’s a chance it will come back, it’s pretty hard to not get all worked up about it. Mostly, I have hope, though, and I’m pretty sure I will survive for the long haul. I figure if I have more hope than worry, then life will be a whole lot more fun.
More about Jennifer: According to PEOPLE.com, the reality TV star, who placed fourth on “Survivor: Palau” in 2005 and passed away in her home in Oregon, was first diagnosed with stage-three breast cancer a few months after her “Survivor” season ended. She had a modified, radical bilateral mastectomy, then chemotherapy, then she took Tamoxifen. (Tamoxifen is a drug used to prevent recurrence for those who qualify for it. I don’t.)
Jennifer apparently found something suspicious in her right breast in the summer of 2004, but she chalked it up to scar tissue related to breast implants, and she let it go — for a long time.
Don’t do that, people! Don’t let anything go — if you find something, find a doctor. Right away. Then demand a mammogram, an ultrasound, an MRI — just don’t self-diagnose. The results can be tragic.
If you can remember just one thing about breast cancer, make it this: if caught early, this disease can be stopped. It doesn’t have to grow and spread and take over other organs. Small tumors can be removed, your body can be treated, and you can survive. Really, you can. So check your breasts (forget those who tell you self-exams are unnecessary and mammograms can wait) and report anything — anything — that just doesn’t feel right.
Side effect of cancer treatment: limited range of motion in my left arm
I do have my breast. And I have a fairly good prognosis. My lump was removed and measured 1.1 cm, which is small. My lymph nodes were negative for cancer, although four were removed for biopsy purposes. My margins were clear, and there was no apparent spread of cancer. My cancer is considered stage 1. And that is good. I have two incisions, one in my armpit where lymph nodes were taken and one underneath it, on the side of my breast. They are both about 3.5 inches long. Besides a bad skin reaction to the tape I was bandaged with, everything went well. There are minor inconveniences right now. As my incisions heal and my skin tightens, it’s harder to lift my arm. So I have exercises I must do each day. Because of the missing lymph nodes, I may have trouble with swelling in my arm so I have to watch for that. I have not been able to shave my armpit since my surgery on December 3.
And now I await the next step in this battle. I will begin receiving chemotherapy in mid-January. This will last for three months. I will go for treatment four times, once every three weeks and will have a combination of drugs sent through my body via IV. The purpose of chemo is to kill rapidly growing cells, and cancer cells are rapidly growing. Unfortunately, all rapidly growing cells are killed, like hair cells and bone marrow cells. The chemo should kill any cancer cells that floated away from my breast, if any did. I don’t know how I will react to this process, as each person responds differently. At the very least, I hear I will be tired at times during each three-week time frame. I may also be tired from the radiation. This will begin three weeks after chemo ends. NOTE: It didn’t happen exactly like that: Instead of receiving chemo every three weeks, I had it every two weeks — it’s called dose-dense chemo, and if the patient can tolerate it, it’s thought to be more effective. Did I tolerate it? Well, I survived, but I was hospitalized twice because it was so hard on my body.
I will receive radiation every day for 6 weeks. The purpose of radiation is to zap the actual area where the cancer was found to prevent it from recurring. Many women take a drug after chemo and radiation to prevent recurrences. The drug (usually tamoxifen) is taken for five years. My body will not respond to this type of drug due to negative estrogen receptors (if they are positive, the drug can be taken) so chemo and radiation will be my only two real treatments. NOTE: Radiation went just fine. It was a breeze compared to chemo, and my skin didn’t burn too badly. The biggest hassle was the drive to and from the appointments. And while it’s not such a big deal, my left arm has limited range of motion due to the combo of surgery, scar tissue and radiation. See photo above — my right arm touches the ground, but my left arm won’t.
For now, I am trying to keep life simple. Joey and Danny help me do that. Joey knows I am frequently going to the doctor for a “boo-boo” I had in my “booby” and he has been very attentive. One day after a doctor appointment, he said, “Mommy, you need to go home and rest. I’ll bring you a banana.” He is almost four years old. Danny, at 19 months, does not seem to know anything is going on and it’s my hope that he never has any recollection of this path our lives are taking. I will never forget it, though, and that’s OK. I will take this experience and make it matter. A friend sent me a breast cancer bracelet inscribed with trust your journey. I do. I trust that I will be fine in the end. And I trust that I was given this fight so I can help others. That is why I have written this. I hope everyone who reads about my journey is affected in some way. Perhaps it will increase the amount of women who do self-exams. Maybe it will arm others with information to help loved ones who are affected by this common disease (about 1 in 8 women will get breast cancer at some time in their lives). Maybe it will spread hope. At the very least, writing helps me. And for now, that is enough. NOTE: Writing still helps, five years later.
Sending out some well wishes to a few friends — Carmen, who, on her second run with breast cancer, is recovering from tram flap surgery. And Lynea, she’s navigating the murky waters that come flooding in after a new breast cancer diagnosis. Also, Stacie, sporting a newly-shaved head as she fights her way through the burden of chemotherapy. Genne, too. She is healing from a mastectomy and reconstruction, and the whole ordeal has challenged her to the core.
If you are somewhere along the path of cancer survival and would like a wish sent your way, please leave a comment and tell me what’s going on in your world.
Gotta love a new breast cancer breakthrough. This one just in: “A new targeted cancer drug has been shown to shrink tumors in women with metastatic breast cancer after an average of seven other drugs, including Herceptin, failed,” says Charlene Laino for WebMD.
The new drug is called T-DM1. The T stands for trastuzumab (that’s scientific for Herceptin), and the DM1 comes from an old chemotherapy drug called maytansine that was abandoned several decades ago after it was found to be too toxic for patients, according to Dr. Ian Krop of the Dana-Farber Cancer Institute in Boston.
Well, isn’t it still too toxic? Nope, because Herceptin only zeroes in on cancer cells that express HER2, says Krop, and DM1 is delivered only to those cells. “The cytotoxic drug goes right to the cancer cells, so it’s not floating around and causing other problems,” he says. “And Herceptin still does all the things that Herceptin does.”
Herceptin is a drug used to fight HER2-positive cancers — tumors that have too much of a type of protein called HER2. Herceptin, a man-made antibody, binds to and blocks the HER2 receptor that appears on the surface of some breast cancer cells. It was one of my drugs, and it seems to be working — I’m alive five years after my diagnosis. But metastatic breast cancer (the kind that has spread to other organs) can become resistant to Herceptin, which is why researchers have been searching for new drugs to attack HER2.
With this new drug, tumors shrank in one-third of women studied (they all had breast tumors for an average of three years). In another 12 percent, tumors stopped growing for at least six months. The women had previously been treated with therapies including Herceptin, Tykerb and Xeloda, and each had failed.
“This is the first study looking at women who have failed so many other treatments,” reports Krop. He thinks the results (presented at the San Antonio Breast Cancer Symposium December 9-13) are as good as he’s ever seen in such a sick population. And researchers expect T-DM1 will perform even better in women with earlier-stage cancer.
The following was written by Julie Hurvitz, on behalf of Quintles and ClinicalResearch.com
It’s wonderful to know that approximately 89 percent of women with breast cancer will be there to tell bedtime stories to their children this year. This number is much higher than it was 20 years ago due to early detection and improved treatments. As a daughter of a breast cancer survivor myself, I’m thankful for every single day my mother and I have together and every telephone call that is made and received. Medicines and procedures such as chemotherapy, hormone therapies and targeted biologics slow cancer down and keep it from coming back. And these victories are all due to advancements in medicine made possible by clinical research.
Today, I’m proud to introduce you to www.ClinicalResearch.com, a new resource that provides important facts about clinical research, encourages more people to become champions of clinical research and builds excitement for the promise of tomorrow’s medicines!
Sponsored by Quintiles, www.ClinicalResearch.com presents easy-to-use, comprehensive information for those who have little or no understanding of clinical research and the value it brings to healthcare. With a few clicks, patients who visit www.ClinicalResearch.com can identify ongoing or future clinical trials appropriate for their disease or condition and narrow them down to those that are geographically convenient. What else can ClinicalResearch.com provide?
The Web site puts you in touch with supporting information about clinical research
In order to win the fight against diseases such as cancer, diabetes, Alzheimer’s, viral diseases, heart disease and stroke, millions of people need to be aware of and participate in clinical trials and research. But more help is needed!
The clinical trial became the standard in developing drugs in 1962, and since then, the FDA has approved over 1,019 novel therapies. Virtually all the medicines used today are a result of clinical research, including all drugs for cancer, heart disease, depression, HIV, Alzheimer’s and asthma. Clinical research through clinical trials is arguably the greatest medical invention of the 20th century. It continues to deliver life saving medicines and treatments and gives hope to patients in need of better care and effective medicines. Need another reason to consider clinical trials? The research pipeline holds over 9,605 potential breakthroughs!
To hear patients and doctors tell their story about clinical trials, please click here.
Take a moment this afternoon to visit www.ClinicalResearch.com, browse around, and learn more about getting involved.
First, let me say that Julia’s website is not for the faint of heart. She admits it, with this statement on her blog: “CancerVacation.com features written material, illustrated artwork, digital artwork, and medically-themed photography that may contain nudity, blood, or other things that one might classify as ‘ooky’. If you are under the age of 18, if it is illegal for you to view this type of material, or if it was not your intention to visit this site, then please leave by clicking here.” (Julia heads you back to the Google search page when you click on her site.)
OK, you’ve been warned.
www.cancervacation.com
Now, even though the images you’ll see at CancerVacation might be a little raw, they are completely and entirely breast cancer real. They show surgery (Julia had a mastectomy, plus hysterectomy), hair loss, weight gain (yes, because being sick and bald isn’t quite enough!) and just about everything else central to the fight for life. There’s even some fun stuff, like paper dolls.
Basically, if you want an authentic look at breast cancer, Julia has the goods.
“When I first found out I had cancer I immediately went online to find out anything I could,” she writes on her blog. “The results were very disappointing. Nearly all of the photographs, especially, were deficient in multiple ways… usually the best you could find was a grainy, anonymous sort of ‘before’ and ‘after’ set. There is a very understandable reason for this; a lot of women don’t want to be photographed in any state of undress and especially not during a time when they’re vulnerable and scared. Most women don’t think, “Wow, I have cancer – I need to take some pictures of this!” Most people who have just been diagnosed with cancer are shocked and worried and have other things on their mind other than documenting the whole thing for other people.
So here was my opportunity to fix that. Sure, there weren’t easily accessible photos of what would happen to me during my mastectomy (and the following procedures)… but there will be for the next woman, right? This is something that (I think) I can fix.”
Photo courtesy of Jordan Pfaff, almost 5 years old
I’ve never really liked the curly hair I got post-chemo. Now, it’s not as curly as when it first sprouted, but it’s definitely wavy and full, and on a humid Florida day (that would be, like, seven days a week, mostly year-round), it grows really big. Thank goodness for the flat iron, because I use my pretty pink one every. single. day. no. exceptions. (Well, except for that one day I let my locks go natural and Joey greeted me after school with an enthusiastic, “What happened to your hair?”)
OK, so I overuse my flat iron, and the crazy-hot heat is damaging my hair for sure. So realizing my strands really needed a break, I had this hair-straightening procedure done two weeks ago. Here’s how it worked: My hair stylist washed my hair and dried it, rubbed and combed in this solution, dried it again and then flat ironed it all over. For three days — OMG, three days — I could not wash my hair (ewww!), supposedly so the magic could lock itself in and straighten my hair for up to four months. And now that I’ve been washing and conditioning my hair for a bit (with special no-salt products), I’m here to tell you what I think about what cost me $150 (plus tip, plus $30-ish for products).
The Coppola Keratin Complex Smoothing Therapy seems to have some merit. It has not worked miracles, and I still have a sort-of bend in my hair, and it’s not immune to the effects of weather, but my hair is smoother and straighter now than it was pre-expensive treatment. I can blow-dry it and leave it as is, if I’m OK with a tiny bit of fluff, or I can dry it and pass through a couple of times with the flat iron — which is what I’ve been doing. My ideal scenario would have been to pack away the iron entirely, but my hair is just not as poker straight as I’d dreamed it would be, so I use it a little — much less than before, though, so that’s a good thing.
When four months is up, or whenenver the effects wear off, I’m not sure I’ll do this again. Truth be told, the no-shampooing thing was really hard, mostly because I like to exercise and sweat every day (so hair washing really is a daily necessity for me) and also because my hair got heavier and greasier by the day, and that just basically grossed me out. I guess if after three days I was rewarded with perfectly super-straight hair, I’d take the plunge and empty my wallet again, but it’s just not. It’s an improvement. Just not dead-on straight — you know, like the hair I had pre-cancer, the hair I permed non-stop because I was sure I wanted curls forever. Well, I was wrong. I don’t.
I got my first port in April 2005. I was told I should probably get a port prior to chemo (for breast cancer), so I found a general surgeon who could perform the surgery ASAP. I only had to do four rounds of chemo, but I didn’t want to take any chances with ruining my veins. As it is, I only have one arm which can be used since I had lymph nodes removed on the other side. After I completed my chemotherapy, I went ahead and set a date to have it removed, since it was pretty much useless as far as using it instead of an IV for surgery and such. My general surgeon didn’t find it necessary to take me back into the OR to remove my port. Instead she did it right in her office, claiming it wouldn’t hurt. At the time I had it removed, only three months had passed. So when she took a scalpel and sliced through the original incision, she was cutting through a healing wound — and it hurt. The site never healed correctly after that. Scar tissue formed on top of scar tissue. But still, it wasn’t all bad.
In 2008, when my cancer returned, it was thought that I would have to endure chemo again. So when the breast surgeon went in to remove bits of my chest wall, she placed a port so I wouldn’t need another surgical procedure. It wound up unnecessary, as I underwent radiation instead. The port sat unused until April of this year. I was undergoing breast reconstruction surgery, so my plastic surgeon removed it. Not long after, as it was healing, I noticed some areas that hurt when I touched it. Upon closer inspection, I found that I had very small bits of nylon surgical sutures poking out of the scar. I couldn’t pull them out or cut them any closer to the skin. These stitches sticking out, along with scar tissue on top of scar tissue, made for a pretty uncomfortable area. When I found out that I would be having revisions made to one of my breast implants, I asked my surgeon if he could make it a little less sightly. He agreed to revise the scar for me as part of my procedure on Monday. I’m looking forward to being able to wear my seat belt and bra straps comfortably again.
For the most beautiful hair ornaments in the world, France Luxe is the place to shop. Headbands and barrettes are the specialty at Laurie Erickson’s store, but for those without hair, she’s got something pretty amazing, too.
Through her Good Wishes program, Erickson is donating silk headscarves to women and girls losing their locks to illness or treatment. Why? “Our goal is to provide a small bit of comfort and share the power of positive thinking and good wishes with these individuals on their path to healing and recovery,” says the company website.
Yes, you can score a scarf for free (value: $72-$94) if you are dealing with the crappy state of hair loss. Even better, you get to pick your print. Just call this number to request your fancy freebie: 888.884.3653.
Writer Abigail Thomas offers in her book “Thinking About Memoir” the following writing exercise: Write two pages (one post) in which a child comforts an adult.
That’s easy.
The child was Joey. The adult was me. And it happened in February, 2005, one day after I realized my hair was shedding from my scalp faster than I could say chemotherapy. It had been 13 days since my second treatment with the toxic breast cancer drugs Adriamycin and Cytoxan, and not a rubber band nor a hat could hold my wisps in place. My scalp was sore, each hair still attached to my head hung with a weight that was nearly unbearable, and it had become abundantly clear that the moment had arrived: It was time to shave my head.
“Don’t worry, mom, you’re not going to die,” announced my almost 4-year-old boy, who was taking his turn shaving away the last of my chemo-stricken hair. “It’s only a haircut,” he assured me.
Whether he knew it or not, Joey was absolutely right. It was only a haircut. I didn’t die. And while some of his comments during my years fighting breast cancer weren’t as comforting — “You look like an alien,” he revealed while visiting me in the hospital in March of that same year — this is the one that still brings tears to my eyes, because, well, it was innocent, it was real and most of all, it was damn comforting.
Deb is about to get a brand new, pink breast cancer bracelet in the mail, because she is the lucky winner of this pretty giveaway prize. Congratulations, Deb!
Thanks to Dawn at Out of the Blue Delivered for donating this bracelet, and for raising awareness about a disease that too many of us must fight.
The toughest part of my dance with breast cancer was losing my hair. Seems crazy, doesn’t it, that a tumor was living in my body, threatening to take my entire life away, and I was worried about my hair. Yea, crazy. I know that now that I’m alive, probably because the same drugs that left me bald also wiped out a treacherous disease. Still, it’s heartbreaking to lose a headful of hair. Even Farrah Fawcett, who is courageously fighting her own cancer battle, hung onto her famous hair for as long as she could, only succumbing recently to the toxic hair-stealing chemotherapy drugs.
The reality of cancer treatment is that many people will lose their hair. And lots of them, like me, will determine it a tragedy. That’s why the Look Good … Feel Better (LGFB) program exists — to help women face the challenge of a lifetime. LGFB (organized by the American Cancer Society) offers workshops to help cancer survivors feel better. I attended one, and I learned how to draw on eyebrows (yes, chemo takes those too), apply make-up on blotchy skin and cover my head with wigs and scarves. I went home with my very own cosmetic kit, matched to my skin tone, and I met a whole bunch of women walking in shoes that were much like mine. LGFB also offers one-on-one consultations, self-help materials and a 24/7 toll free information and help line — 1-800-395-LOOK.
Take advantage of LGFB if you can. And suggest it to any loved ones who might need it. And do you know of any survivors who deserve to win a trip to NYC (you, maybe)? Check out this contest. LGFB is celebrating its 20th anniversary by searching for five Women of Hope they can pamper with a complimentary make-over and a trip to the annual DreamBall, a black-tie gala and the program’s largest annual fundraiser.
By the way, that’s Nancy up top. She’s a LGFB participant. Doesn’t she look good?
Here I sit in a chemo chair in February 2005, getting dosed with the toxic drugs that are hopefully saving my life, while my mom sits nearby, holding my baby niece Jordan. This lovely man toured the infusion center on this Friday, singing a personalized song to each patient in my similar predicament. He sang about me, my mom and Jordan — the two girls who sat with me for every chemo session. Click on the photo to start video.
I haven’t been watching much of “Grey’s Anatomy” lately, but I do know that Katerine Hiegl’s character Izzie Stevens has cancer, so when I caught tonight’s episode, I was somewhat prepared for the storyline. What I wasn’t prepared for was my reaction to the end of the show, when Izzie pulls fistfuls of hair from her head.
She cried.
I cried.
I cried big, sobbing tears, because even though I am almost five years removed from that same helpless, hopeless feeling, it was still there, right in the pit of my stomach, waiting to be called up.
My cancer memories are vivid. Every one of them. But nothing is as vivid as the feeling that suffocated me the day my hair started falling out, when it washed from my head in the shower and gathered in the drain, and wound around my brush, and then covered my pillowcase when I woke up the next morning.
“That was the worst,” I told my husband as “Grey’s Anatomy” ended tonight and Izzie sat in a hospital bed with a completely bald head. “You survived it,” John said. Yes, I did. But I’ll never forget it.
A friend asked me the other day what I suggest she buy her neighbor who is in the midst of breast cancer treatment. I gave her three ideas. First, I suggested this inspirational book by Dr. Bernie Siegel. It’s all about exceptional patients, and it will convince you that the right attitude really does heal.
Then I recommended this book by Dr. Susan Love. I was once told it’s the bible on breast cancer, and now that I’ve consulted it for my every breast cancer question, worry and freak-out, I know that every breast cancer girl should have this book by her bedside. Dr. Love knows her stuff, and she explains it like she’s a trusted friend with all the answers.
And then there are socks — comfy, cozy, fuzzy socks. I got yellow ones in the mail (Thanks, Ginger!) when I was knee deep in chemotherapy, and they really saved the day. There’s nothing like feeling all warm and toasty when the world is crashing down around you.
Every time I look down into my kitchen sink, I see this breast cancer strainer drain. A mommy friend gave it to me, way back when I was knee deep in chemotherapy, not a hair on my head. This momma was one of many who dropped by meals for me and my boys, and along with the food she delivered on her assigned night, she brought me this.
If you’re looking for a simple, yet meaningful and not-so-expensive gift for someone touched by breast cancer, this just might fit the bill. Click right here to purchase your very own.
The first time they accessed my port for chemo. My chest is pretty flat because they haven’t filled my expanders with saline yet.
My sister cutting my hair. This was soooooo hard. My boys were watching. Very emotional time for me.
The finished shave. It felt really weird.
A big hug from 3 of my boys. They were very supportive, even though it was very traumatic for them, having to watch my head being shaved.
Post chemo. You can see that I’ve lost most of my eyebrows and lashes. My face is a little puffy from the steroids they put me on during chemo. This was a good day – I was waiting at the airport for my son to get off the plane – he was returning after 2 years on an LDS mission in Japan.
Want to show me what you think breast cancer looks like? Please send me a photo that captures the essence of breast cancer, and I will display it here. Email to jackidonaldson@gmail.com, make sure your shot is at least 450 pixels wide and tell me something about the photo. No blurry pics, please.
Iris says, “Much more than cancer, are friends with whom you can rely on during the most difficult stages of treatment, they do look as a beautiful field of lavender. I had the privilege of being supported by my friends, who planned for my an amazing visit to flower fields of lavender in Quebec after my last session of chemotherapy.”
Want to show me what you think breast cancer looks like? Please send me a photo that captures the essence of breast cancer, and I will display it here. Email to jackidonaldson@gmail.com, make sure your shot is at least 450 pixels wide and tell me something about the photo. No blurry pics, please.
Lisa says, “My mom is on her second fight with breast cancer. She was diagnosed this last time near Mother’s Day and I was getting married in September. Last June she had a bilateral mastectomy, then 18 weeks of chemo, and then 30 treatments of radiation. During her first appointment with the oncologist she told her doctors to do what they needed to do, but she was going to my wedding (in Vegas) in September. I offered to change the wedding and she didn’t want me to do that. It was right in the middle of her chemo and she said it was a goal she set in her mind to get to that point. She went and got her chemo treatment that morning before we jumped in the car to go. She had all her instructions and whatnot in case she needed to go to a hospital out of town. Nothing was going to stop her … through out everything she kept the most positive attitude. She is amazing.
My day was so wonderful and special. I married a fabulous guy, but also a lot of that was b/c my mom was able to be there. She is the rock in my family and I was so blessed that she was able to attend.”
Want to show me what you think breast cancer looks like? Please send me a photo that captures the essence of breast cancer, and I will display it here. Email to jackidonaldson@gmail.com, make sure your shot is at least 450 pixels wide and tell me something about the photo. No blurry pics, please.
. A mommy friend gave it to me, way back when I was knee deep in chemotherapy, not a hair on my head. This momma was one of many who dropped by meals for me and my boys, and along with the food she delivered on her assigned night, she brought me this.
