My friend Lexi over at Jeans Cream asked me to write a guest post for her blog and I did. It published today. Here it is: http://bit.ly/9BOMdJ
Archive for the ‘Diagnosis’ Category
What Helped Me Move Forward
Thursday, May 20th, 2010Peeking in at Breast Cancer: Lynea
Thursday, April 1st, 2010Lynea was diagnosed at age 39 with breast cancer following a “baseline” MRI. She’d had a mammogram 8 weeks prior, and her OB/GYN’s office pushed for a MRI due to family history, just so she’d have records to look at years from now. Forget years from now — the cancer was already there! Lynea is stage I, triple negative, and her treatment plan includes 4 dose-dense AC and 4 T. No need for radiation. Here is a snippet of her story:
First day of chemo, 2/2/10
I came up with the idea of taking pictures at the beginning of my treatment, at mid-point and at the end. I joked that presidents have their pictures taken to show how old they got, so why shouldn’t I have pictures to prove how bad it has made me look — or how well I did!
Halfway done with chemo, 3/30/10
I think so far, I don’t feel like I look much different, although, unfortunately, I have found some weight due to the lovely steriods they give me, but I figure there is always time to worry about my weight later.
Just think, Lynea: one day, that tree will be covered with leaves, and your head will be covered with beautiful hair!
Second Opinions Matter
Friday, March 19th, 2010
Photo: cjc4454, Flickr
My darkest hour arrived while I was cooped up in a hospital room with chemo-induced fever and other mystery symptoms. I was bald and bloated and beyond hope when a well-respected attending oncologist swung by my room with a crowd of med students and announced it could be another cancer causing my illness. Probably leukemia or lymphoma. A bone marrow biopsy would determine my fate, this doc told me, just before he casually strolled away from my despair and moved onto his next patient.
It wasn’t a biopsy that greeted me a few days later. It was a new doc, starting a new rotation. A second cancer wasn’t even on his radar. Rather, he was convinced my dose-dense chemo (given every two weeks instead of three) was to blame. Nothing some heavy-duty meds couldn’t fix.
A few days later, I was home, healthy, and once again, hopeful.
That was five years ago, and it was not the first time I was misguided by a well-meaning doctor, which brings me to this very important medical conclusion:
Second opinions matter.
I’m living proof.
“Survivor” Jennifer Lyon Dies of Breast Cancer
Wednesday, January 20th, 2010
http://jennlyon.com/
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.
OK?
OK.
Pointers for Pampering the Princess
Wednesday, December 30th, 2009
www.treatherlikeaprincess.com
If you have breast cancer, consider yourself a princess. Well, if you’re a girl, anyway. If you’re a boy and you have the disease (it happens), let’s go with “prince.”
For the purposes of this post, I’ll focus on the gals, because heaven knows they are the chosen group for this hated disease — the American Cancer Society estimates that 192,370 new cases of invasive breast cancer will be diagnosed in women in 2009, compared to 1,910 men.
OK, so you’re a princess, and you deserve to be treated like one, and that’s why Denise Hazen is doing what she’s doing. She’s spreading the word for loved ones of breast cancer patients about how they can help. First, she’s got a book called “Treat Her Like a Princess,” where she spouts out wisdom on the following topics: planning for meals, scheduling help with kids and pets, hospital care, post-surgery support and celebrating friendships. She also lists helpful resources and a glossary of common terms used during breast cancer treatment.
That’s not all. Denise also has a rockin’ website, where survivors can tell their stories, you can order your own book, read rave reviews and more.
For additional information, feel free to contact Denise herself at denise@treatherlikeaprincess.com — I’m pretty sure she’ll do anything to help a princess out.
Wishing You Well
Saturday, December 19th, 2009
SuperFantastic, Flickr
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.
Famous People Fighting Cancer
Saturday, December 12th, 2009
Kathryn Joosten, Dana Delany and Heather Tom / En Vacances, Flickr
One quick spin through the online pages of PEOPLE magazine, and I turned up a whole bunch of celebrity cancer news. I guess I’ve been letting famous folks fall of my radar (I do love a little Hollywood gossip), because I had no idea that Bryant Gumbel is being treated for a malignant tumor in his lung or that Kareen Abdul-Jabbar has leukemia. Then there’s musical superstar Andrew Lloyd Webber — he’s got prostate cancer, “Desperate Housewives” actress Kathryn Joosten is fighting lung cancer, and Melissa Etheridge is in the news, too — she’s speaking up about the mammogram controversy. “Survivor” alum Ethan Zohn has good news about his cancer, and holy cow, where I have been that I didn’t catch that famous journalist Leroy Sievers died of cancer in August 2008? I followed Siever’s NPR blog posts faithfully when I myself was fighting cancer. But then I got better, and, well, I got busy with more than just following who had the disease and how each person was faring.
With every passing day, I’m losing track of cancer (and celebrities, too, apparently), which just fine by me. I mean, while I still plan to keep educated on the breaking cancer news of world, I tend to think my time is best spent on other things — like, braving boys!
Beautifully Benign
Tuesday, November 24th, 2009
matze_ott, Flickr
Five years ago, on November 24, I was diagnosed with breast cancer. And today, on another November 24, I learned that my recent MRI, showing some suspicious little nodules, is nothing to worry about. The news comes from my surgeon, who offered me a second opinion. The first opinion, by the way, was that I probably had nothing to worry about, but now it’s official:
“Your MRI is fine, the small spots represent fibrocystic disease, a benign condition.”
Whew!
Flashback: November 24, 2004
Tuesday, November 24th, 2009
alanclarkdesign, Flickr
My phone rang at 10:00 a.m., and the doctor who did the biopsy said the pathology report was back already. He said that unfortunately, cancer cells were found. He said I would need a lumpectomy (surgery to remove the lump), radiation, and possibly chemotherapy. He told me to buy a book called Dr. Susan Love’s Breast Book. I got the book that day.
Somehow, I made it though the Thanksgiving weekend, with my thoughts jumping from the hope that this would turn out OK to the fear that I would not see my boys grow up. My mind wandered and worried about surgery and what treatments I would have. I wondered if I could have more kids and whether or not I would lose my hair. I cried and lost sleep and was hopeful, too.
I learned a lot from reading my new book. I learned that many women do go on to have kids after cancer, but I also learned that chemotherapy in young women could cause early menopause. I learned that I have an 85 percent survival rate, and also that I will get tiny little tattoos surrounding my breast to aid in the proper delivery of radiation. These permanent tattoos will also alert any future doctors that my breast has had radiation because I can never have it again in that same area. The book helped me feel positive about this journey, but it also helped me face reality.
Note: My survival rate turned out to be more like 93 percent for five years. And here I am — at five years.
No Mammograms at 40, No Self-Exams at All
Tuesday, November 17th, 2009
feelyourboobies.com
While I find it pretty odd that the task force of 16 declaring women don’t need mammograms starting at age 40 anymore does not include any oncologists — what? — I won’t spend too much time arguing about this topic. I just don’t have the tools to determine whether or not this is a good recommendation. I mean, I tend to think not, but I see the point that over-testing does lead to false positives, anxiety and unnecessary biopsies. A mammogram did not find my cancer, after all — I did. Which brings me to the point I am going to argue.
This same panel says women should stop conducting breast self-exams, and they should no longer be taught how to perform them. Seems they are not all that effective in turning up cancerous tumors, and there is no difference in mortality rates between women who perform them and women who do not. Uh, not so fast — there’s no doubt in my mind I’d be dead right now had I not been examining myself in the shower five years ago yesterday.
OK, so I’m just one woman, but isn’t that enough? And what exactly is wrong with doing the exam? Maybe it’s ineffective and doesn’t work — but is it hurting anything to do it, just in case? Why tell women to stop? Why not just tell them to not rely heavily on the outcome?
Here’s what I’m saying: Keep feeling your boobies! When you come across something that feels funny, go to your doctor and let that person determine whether you should worry or not.
Just be safe.
Not sorry.
Slim Down to Cut Your Cancer Risk
Monday, November 16th, 2009
cohdra, morgueFile
This isn’t always true, because I was not overweight prior to my breast cancer diagnosis (which means something else caused my unfortunate turn of events), but carrying around extra fat on your body is definitely linked to an increased risk for developing the disease. My friend, nutritionist and author Jonny Bowden says so — “Researchers estimate that extra body fat causes 33,000 breast cancer cases a year,” he says, and guess what? Probably 21,000 cases of endometrial cancer and more than 13,000 of colorectal cancer are caused by too much weight. Scary stuff, isn’t it?
There’s good news: You can reduce your risk by losing as little as 10 percent of your current body weight. (Well, if you are overweight, that is. No need if you’re currently maintaining a healthy number on the scale.) Here’s a bunch of tools to get you started. Oh, yea, and if you’re in the market for breast cancer treatment, be prepared to pack on some pounds. It happens (I was in the 10-pound club myself) — who knows why (the drugs, maybe) — but you might very well need to shed some skin after the fact. So these tools may come in handy down the road, even if you don’t need them now.
What Breast Cancer Looks Like: Julia
Thursday, October 29th, 2009
www.cancervacation.com
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.”
Mammogram Bus Rolling Through Puerto Rico
Wednesday, September 16th, 2009
Ruta Pink mammogram bus
With early detection often leading to a 98-percent survival rate, mammograms are essential for women over 35. Unfortunately, millions of American women are uninsured, and don’t have the means to afford an annual mammogram test. But in Puerto Rico, uninsured women are turning to a new program for help.
Last year, Doral Bank in Puerto Rico partnered with Susan G Komen for the Cure and launched “Ruta Pink” (Pink Route). Ruta Pink is a pink mobile mammogram clinic that stops through various towns in Puerto Rico, offering women (and even men!) free mammograms, but also biopsies and referrals. These healthcare services are offered free of charge, for both sexes, whether they insured or uninsured.
In addition to providing direct health care services, Ruta Pink is also running free educational seminars about breast cancer prevention. The sessions also address self-esteem and healthy living tips for breast cancer survivors.
Since launching in June of 2008, Ruta Pink’s medical team has performed over 2,000 mammograms. And Doral is also committed to helping the Susan G Komen foundation by offering contributions every time a woman opens a “Pink” account with the bank.
With breast cancer awareness month (October) just around the corner, Doral Bank in Puerto Rico is leading the way for breast cancer prevention and education with its innovative, award-winning Ruta Pink initiative.
For more information about the program, you can contact the program’s exclusive hotline at (787) 625-5830 or visit their website at www.RutaPink.com. You can also watch their videos on YouTube at www.youtube.com/rutapink
Patrick Swayze Dies of Cancer, Maura Tierney Has Surgery for It
Monday, September 14th, 2009
Photo: amazon.com
I should be working — editing nine posts for That’s Fit so they can publish tomorrow — but I’m too sad at the moment, because I just heard that 57-year-old Patrick Swayze has died of pancreatic cancer. He battled the disease for 20 months, which is a lot longer than many folks get (the survival rate for this type of cancer is just 4 or 5 percent for five years), but still, 20 months is not good enough. And so my mind is scattered by the news of his death, and the realization (again) that cancer is a nasty and evil opponent. And while I’m lucky that my chance of surviving breast cancer is 93 percent (November 2009 = five years), I feel more vulnerable right now than I do on most days.
Doesn’t help that I also just read that former “ER” actress Maura Tierney just had surgery for breast cancer and has dropped out of NBC’s new show “Parenthood.” The star’s spokesperson says that 44-year-old is “deeply disappointed” not to be participating in the show, and that “Ms. Tierney and her doctors remain confident that the outcome of her treatments will be positive.”
I’m confident too, because really, my hope is a lot stronger than my fear, and so I just need a bit to recover from the sadness. Then I can get to work.
Why Hispanic Breast Cancer Patients Fare Worse
Wednesday, June 17th, 2009I learned today that while Hispanic women don’t have the highest incidence of breast cancer, they do fare worse after diagnosis than many other women. Here’s why.
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Hannah has breast cancer
Friday, April 24th, 2009
I’ve never heard anything like it and apparently, not many people have, because the parents of this sweet little girl are at a crossroads over how to treat their 10-year-old daughter, who was just recently diagnosed with breast cancer.
Hannah Powell has invasive ductal carcinoma, Stage IIA.
Here’s the dilemma: What type of treatment should a child with an adult disease receive? Hospitals that deal with breast cancer usually do not treat children, and children’s hospital do not have facilities for treating breast cancer. Hannah’s family posts on their website, “We have two options at this point; (A) Hannah goes to a breast center that does not have the experience in children or (B) she goes to a hospital that has more pediatric care but not so much in the breast cancer area.”
Hannah’s family is searching for answers, and if you have any information that might help them, please stop by their website and let them know. Do you know of any very young breast cancer patients? Do you know of any doctors who have treated very young breast cancer patients? Even if you don’t know how to specifically guide this family, I know your well wishes would help. So pay them a visit when you can.
Every Six Months
Friday, April 17th, 2009
You’d think the days would get easier after four whole years. But still, nearly 1,600 days after my breast cancer diagnosis, it still makes me nervous to sit in an exam room every six months, in my pretty blue gown, waiting for my oncologist to reveal whether or not he feels anything suspicious in my breasts and other body parts, whether or not he finds anything wacky in my blood work and whether or not he’ll report that I am still healthy and apparently cancer-free.
The days don’t get easier, because even though my chances of survival increase with each year that passes, there are still people out there who are re-diagnosed after the exact amount of time that has elapsed for me. A woman who visited our garage sale a few weeks ago told me that on the very day she celebrated five years of survival, she was told her breast cancer had returned and was spreading. She was given three to five years to live. Crap. I haven’t even made it for five years. Clearly, this could happen to me.
Will my oncologist tell me on Monday at 8 a.m. that my cancer is back? I really don’t think so. But I really don’t know, either. And that’s why I’m nervous.
Have wig, will send it
Saturday, March 14th, 2009
Today, I shampooed, conditioned and combed my old wig. It sits drying on my bathroom counter. When it’s all done and pretty, I’ll mail it off to my friend Carmen, who just the other day had her first chemotherapy for breast cancer.
This is not Carmen’s first experience with chemo, and it’s not the first time I’ve sent her my wig. This is her second dance with the breast demon, you see, and so she’s had chemo before, she’s lost her hair before and she’s worn my wig before. She’s not happy she must do it all again. I’m not either. I am happy to help, though, and that’s why I’m eager to get my hair to her, so she can be ready when everything comes tumbling from her scalp for the second time. Hopefully, for the last time.
Dear Carmen,
Best wishes to you. I know life must seem crappy and uncertain right now, but there is one thing you should know for sure: You will look so much better wearing this wig the that styrofoam head wearing it right now. Your eyes are more sparkly, your skin is more radiant and your nose is so much prettier (what the heck happened to that thing?). You are beautiful, my friend — hair, no hair or fake hair. And when you get all your new parts, you will be one hot momma.
Hang in there, Carmen — your battle might be new, but your fierceness is not. Fight with all your might, and you will again emerge from the darkness. And remember these words, because if cancer ever invades my body again, I want you to throw them right back at me.
All my love,
Jacki
25 Things About Me
Thursday, January 29th, 2009
1) I have two beautiful boys who made big entrances into the world: One was 10 pounds, 9 ounces and the other was 10 pounds, 2 ounces. No C-sections. Just lots of drugs, lots of a pushing, a vacuum and two whopper episiotomies.
2) My big boys left me with big tummy skin. Five years after the second baby arrived, I had a tummy tuck. I must say it was one of the best moves I’ve ever made. Something about sitting down and not having a roll of skin flop over the top of my pants is quite liberating.
3) My biggest boy (Joey, he’s 8 years old) won’t stop growing. The kid wears my same shoe size, is something like four feet nine and weighs well into the 80s. His doc thinks he may be six feet six when he “grows up.”
4) A tummy tuck is not the only surgery I’ve had. Before kids, I had a breast reduction and lost 4 pounds of dense, heavy tissue. I went from a 34 DDD to a 34 C. Another great move.
5) My reduction may have saved my life, because 8 years later, a cancerous tumor showed up in my left breast. Had all that tissue not been removed, the mass could have been buried deep inside, detectable perhaps only at a late stage.
6) My breast cancer was caught early (I found it while taking a shower). It was stage I, with no spread to lymph nodes. Still, it was aggressive and so my treatment was quite harsh.
7) Being bald was the toughest thing I’ve ever had to endure.
8) I am a licensed cosmetologist. Thought I didn’t want to go to college, so I did a vocational program in high school. Then realized I did want to go to college and spent the next seven years there.
9) I got my undergrad degree from Kent State University and my grad degree from the University of Florida.
10) I was born in Ohio and lived the majority of my years there. Yet Florida seems more like home, maybe because my mom and sister live here.
11) Someone I know thinks my mom, sister and I look exactly alike. I guess that means I look 62 or my mom looks like she’s in her 30s. I’m going with the latter.
12) For 30-some years, my sister and I were never told we looked alike. Then my hair grew back brown instead of the blonde it had always been, and it’s like we’re twins or something.
13) I have very poor vision. What someone with perfect eyesight can see from 400 feet, I can only see from 20 feet. I hid my glasses in my bedroom closet for the whole year I was in first grade. Wonder if that made things worse.
14) It took me 37 years to learn how to eat well. I figure a healthy lifestyle is my key to surviving cancer so no red meat, alcohol or sweets for me. I only drink water (although not enough, I’m pretty sure) and try to consume lots of fruits and veggies. I watch calories and fat but sometimes go overboard on the bad carbs. I just can’t resist restaurant bread.
15) I’ve been known to exercise obsessively (to maintain my weight and stay healthy too) but am sad to report that I’m just not feeling the motivation lately. Burnout, maybe.
16) I’m a neat freak but not a clean freak. I don’t clean once a week or anything, just when I notice the dust piling up. But everything must be in place at all times.
17) I traveled to Europe just after graduating from high school and for the whole month I was away, I wanted to be home. I never want to go back.
18) I hate to travel. I hate packing, driving or flying long distances, living out of suitcases. I was miserable on a flight to Hawaii many years ago, and while traveling from Ohio to Florida as a kid, I could will myself to sleep for almost the entire drive.
19) My boys have never seen snow but can’t wait to see it. And I can’t imagine ever getting them to a snowy location, because it will require travel.
20) My boys want a baby sister. I don’t want another baby.
21) I miss my grandma, who died three weeks after my second guy was born.
22) I love candles and silence.
23) I love when my boys are really happy. My heart breaks when they are really sad.
24) I have been married for 13 years. John remembers exactly what I was wearing the day we met. I remember that he complimented me on my cute toes.
25) I’ve worked at a hair salon, a yogurt + tanning salon, as an RA at Kent State and a judicial officer at UF, as a college administrator, a preschool assistant teacher and as a server of booze at Blossom Music Center in Ohio. My favorite jobs, though, without question: Mommy and writer.
Breast cancer, go away
Wednesday, January 21st, 2009
My friend Carmen just had surgery yesterday.
A double mastectomy for her second fight with breast cancer.
Here’s hoping it’s her last.
Photo courtesy of S.³ on flickr
