New research reveals that chemo brain is real (yay, now I have an excuse for all my forgetfulness).
It also indicates that the condition is probably temporary (OK, maybe no excuses).
Read more: Evidence of ‘chemo brain’ verified by researchers
Raw October — Day 27 (Reconstruction Options Compared)
Raw October: raising breast cancer awareness — one fact, figure, feeling, and photograph at a time.
Thank you to the folks at Miami Breast Center for the following infographic, which details and compares several breast reconstruction options. I am not in the reconstruction loop at all, so I was not aware of the BRAVA + AFT method (see third column) — if you are in the know and have thoughts on this topic, please share.
Raw October — Day 15 (Not for the Squeamish)
Raw October: raising breast cancer awareness — one fact, figure, feeling, and photograph at a time.
There is nothing pretty about breast cancer, and CancerVacation blogger Julia Grim captures the disease in its raw form (click on this link, then Photos & Reports, then Photos). Her photos are not for the squeamish; they are for anyone who wants a peek at the realities — surgery, chemo, hair loss, weight gain — that cannot be tied up all pretty with a pink ribbon.
Here are the photos: http://www.cancervacation.com/home.html
Leslie Scored a Sleeve and Ditched Cancer
Leslie won the LympheDIVAs giveaway sleeve. Here, she shows off her new fashion (and function) statement and shares her breast cancer story.
I have been so fortunate and blessed in my cancer journey. My doctor received the “normal findings” of my annual mammogram, which was done in mid-May, with the notation that my tissue was dense. He called and said he would like for me to have an ultrasound done as an additional precaution. Early in June, I had the ultrasound and a small spot (4mm) showed up in my left breast. The radiologist recommended that although it was probably just a cyst, I should go ahead and have a core biopsy. This was done a week later, and 10 days postbiopsy, my doctor called to sadly inform me that I had stage 1 cancer. I was catching a plane to celebrate my father-in-law’s 95th birthday within a couple of hours after that call, so my husband and I decided that we would keep the news to ourselves for the long weekend while my doctor set up an appointment with one of our local surgeons for the following week. I must admit that I have felt from the beginning a sense of peace about this whole experience. I have never doubted that my Lord has been with me at all times, and I rest in His saving grace.
When I returned from our trip, I met with the local surgeon and told him that because my mom was a survivor of cancer in both breasts, I wanted to go ahead and have a double mastectomy. He agreed and was to process the schedule with the reconstruction plastic surgeon. In the meantime, I made an appointment for a second consultation with MD Anderson in Orlando. I met with both the oncologist and then the surgeon, and both physicians felt that I was being extremely aggressive in my decision for a double mastectomy based on the results of the biopsy and felt a lumpectomy was the appropriate course of treatment with radiation. But they would do whatever I decided. After researching the statistics and talking to my family, I decided to go with the breast conservation and had a lumpectomy done on August 2. Ironically, the lab reports that came back from that surgery, which included the sentinel lymph node, indicated that ALL the cancer had been removed by the initial core biopsy done in June, and there was no finding of any cancer in the site or at the lymph node!
I am now undergoing 16 days of radiation and will meet again with the oncologist to discuss hormone therapy. Through all of this, I have had minimal pain or discomfort and the only inconvenience is driving 50 miles to and from Orlando for my doctor visits and radiation treatments—no complaints on my end! So many wonderful people have been such a support to me—what a blessing. I have met numerous courageous women dealing with their cancer, been encouraged by an unbelievable number of breast cancer survivors, and have become an advocate for educating and encouraging women in my daily walk to be sure to get their annual mammograms, and if the findings are dense tissue, to seek additional screening such as the ultrasound. Had I waited another year for my next mammogram, who knows how large the tumor would have grown or how far it could have spread. Thanks to my doctor’s foresight, my cancer was caught so early that my prognosis is excellent.
During this journey, I had the pleasure of getting together with one of our business clients. My husband had told her what was going on and she told us all about her cousin Jacki Donaldson and her exceptional cancer journey. As it turned out, I was given a LympheDIVAs sleeve that my friend had won in a contest. When my girlfriend (who is an OT and is trained in lymphedema therapy) was measuring me for the LympheDivas sleeve, I showed her the design I had picked out. She wondered why I was going with the lacy look that will stand out instead of a neutral skin tone color. I told her I want people to notice and hopefully ask about it so I can promote LympheDIVAs and give the elevator version of my experience and how important it is for women to be informed and know about dense breast tissue.
Thank you for detailing your story, Leslie; I hope you get to tell it over and over again because it will make a difference.
LympheDIVAs Compression Sleeve (GIVEAWAY)
I have a compression sleeve. I just don’t wear it much—mostly because I’m not at high risk for developing lymphedema, but also, I think, because the thing is sorta scratchy, and it pretty much blends into the corner of my closet withs its flesh-colored boring-ness, and, so, I usually forget to wear it when I mow the lawn (which, to be honest, is rarely) or when I travel by plane (which I hardly ever do). I’ve got to tell you, though—I’m pretty sure times are gonna change.
I just received a new fancy, schmancy sleeve from LympheDIVAs—a small, family-run company that provides fashionable, medically correct compression garments for upper extremity lymphedema. Lymphedema in breast cancer patients is manifest as swelling that can occur when a sentinel node or a number of lymph nodes are removed or when the nodes receive radiation therapy. Having a sleeve on hand is key—it’s one of the tried and true therapies for lymphedema. Now that I have my newbie, I’m thinking it might become more fashion accessory than cancer-surviving burden.
There’s a great story behind LympheDIVAs: The company was founded in 2006 by three inspirational women, two of whom had lymphedema themselves. One of these women—Rachel Levin Troxell—pushed that hot, thick, itchy, beige compression garment option into the shadows by launching some comfortable, breathable, aloe-vera infused, and fashionable arm candy. Seriously, isn’t my arm beautiful?
Sadly, Rachel passed away in 2008, but her creation lives on, thanks to her dad and brother, who are working to fulfill Rachel’s mission to bring lymphedema awareness to the breast cancer community and beyond. Thanks also to Anna, the designer of all the beauty—the same Anna who is GIVING AWAY one sleeve and one gauntlet to one lucky reader.
Ready, set, enter to win:
- Browse the LympheDIVAs online shop and pick out your favorite pattern; leave a comment naming your fave.
- Leave your comment no later than 5:00 p.m. EST on Thursday, July 26, 2012.
- You may enter only once.
- Open to legal residents of the 50 United States and the District of Columbia, who are 18 and older.
- One winner will be selected in a random drawing via random.org.
- One winner will receive one sleeve and one gauntlet in the pattern of her choice. Gift valued at $153.
- Winners will be notified by email, so make sure to check next week to find out if you’ve won!
Tummy Troubles Linked to Chemotherapy
About a year ago, I went to see my OB/GYN for bloating, cramping, and pelvic pressure. I was sure I had ovarian cancer. I didn’t. My doctor sent me to a internist. She tested me for celiac disease. Nope, not that, either, although I did follow a gluten-free diet for a couple of months thinking maybe it would help. It did not. There were other tests I could have taken — one would track an egg moving through my body — but my tummy troubles subsided, and so did my pursuit of an answer.
Eventually, the discomfort came back, then it went away, and this has been the pattern for quite some time now. If I eat healthy, my stomach sometimes hurts. If I eat junky, my stomach sometimes hurts. Often, the pain is so great it makes me want to cry, and at night, I curl up in the fetal position and will myself to sleep. I usually feel better in the morning. To try to cure myself, I’ve played with what I eat and how I eat. I’ve found some recipes that soothe my system — my favorite is a brown rice cake with peanut better and sliced red grapes on top — and I’ve eliminated a few items I believe were twisting up my insides (lettuce). Still, although I can go weeks without symptoms, they always sneak up and cause me at least a day’s worth of sick. This is why I contacted the internist again. She referred me to a GI specialist. I saw her today.
My new doctor believes the culprit might be chemo drugs, which could have mucked up my system. Antigen was the word the doc threw around, and she has ordered a bunch of blood tests, plus a surgical procedure to take a biopsy of some of my intestines and stomach. I will also submit to another test, which will hopefully explain some issues that might be related to my big ‘ol babies (10 pounds, 9 ounces and 10 pounds, 2 ounces). They probably did a number on my pelvic health, my GI friend said, so this test will help investigate further.
I went to the doctor today hoping she wouldn’t just throw meds my way in an attempt to mask what’s going on. She didn’t. For that, I am grateful. She wants to locate the cause of my complaints — I like that. I also went to the doctor today in no way suspecting cancer treatment might come up the guilty party. I’m not surprised, though, because cancer never really goes away. It might not be threatening my life right now, but its presence is always with me.
Beating cancer is half the battle. Living with its aftermath is the other half.
Robin Roberts’ Bone-Marrow Disease Likely Caused by Breast Cancer Treatment
“Good Morning America” anchor Robin Roberts’ bone-marrow disease was likely caused by the breast cancer treatments she received several years ago. Now, she will have chemo to prep for a bone-marrow transplant. See, surviving cancer is not all that simple.
The Hair Hits the Road
It’s been on my head.
It’s been to Melbourne, Florida — twice.
It’s been to Akron, Ohio.
And off it goes now to Vienna, Virginia, where newly diagnosed Michelle will wear this wig once chemo takes full effect. Michelle, just now recovering from a mastectomy, is a married, working mom of two little boys, ages 1 and 4.
Michelle found me via this blog and reached out to ask some questions — several of which were about hair. She liked the look of my “underhair” — cotton on top, human hair around the sides, meant to be worn with hats — and she was thinking of getting such a cover-up for herself. No sense in that. I have a perfectly good one crumpled up in a box in my closet, I told her, and I pleaded that she let me send it to her. She accepted, so I shampooed, conditioned, dried, flat ironed, and topped with a bucket hat. Next, I’ll box it up and mail it off. She should have it in a few days, just in time to bring her some comfort before her own blond hair is gone.
Gosh, this hair tells such a story — I ordered it because I’d tried on a few traditional wigs, and the way they framed my face screamed, “She’s wearing a WIG!” Desperate to look like my own normal in the midst of cancer chaos, I loved the thought of a ballcap on top of hair that looked real. A hundred bucks (plus) later, I had in my hands a perfect solution — the not-scratchy, cottony-soft, blond-like-my-own-hair fix that was so believable a neighbor once commented on how great it was that I had not lost my hair. I attribute the facade to the human hair, the perfect shade of color, cut to just the right length, and looking fresh and clean and bouncy thanks to the recommended Frizz-Ease products.
This wig, which ironically looks nothing like my hair now (chemo can change the color and texture of hair), brought me peace when my world was crumbling.
I think it will do the same for Michelle.
And for whoever is in line next to her.
Surviving Cancer Not So Simple
When the cancer doc says, “you’re cured, go home,” it’s not the end of the story.
In about a year, roughly eight years out from my year-long, every-three-week Herception treatment that targeted the over-expression of a certain protein in my tumor, doctors will start monitoring my heart. Why? Because the same drug that may be saving my life right this very minute, also has the power to compromise heart function after about 3,000 days.
(oh, and the chemotherapy drug Adriamycin that I received via dose-dense infusion on four separate occasions can also cause heart damage.) (dose dense means given every two weeks instead of three.)
(oh, and the radiation that zapped the breast right over my heart every day for 30+ days can also cause heart damage.)
I choose not to think too much about these potential side effects.
Still.
My point:
Surviving cancer is not so simple.
Horrible Hair Day
To end the trauma of my hair shedding in clumps on my pillow, in the shower, every time I brushed it, I put it in four ponytails and cut it all off. Then Joey and I buzzed the rest until I was bald. It was one of the worst days of my life.
Cancer Crazy
Sometimes I wonder if I should write about every little cancer thought that runs through this head of mine, because what if confessing everything makes me seem a little wacky to the millions (OK, hundreds) of readers who stop by each day. I guess that’s the point, though, isn’t it — to spill out every ounce of crazy so others can relate, connect, and realize they are not alone. There is always someone out there experiencing a very similar set of circumstances, and the challenge is to find that someone. Well, if worrying is your game, then you’ve found the right girl — me.
My concern of the day — fatigue. Unexplained, can’t-keep-my-eyes-open weariness. Now, I’m not talking major issue here. I’m in the early stages of feeling tired (translation: yesterday was my first day), but knowing that mysterious sleepiness sometimes registers as a symptom of cancer has got me thinking. I’m thinking it is so strange that while talking to my mom on her back porch yesterday afternoon my eyes were so heavy like lead that I quickly returned home, where I confessed to my family, “I have to sleep!” and headed right for my bed. I was out in an instant and slept for nearly three hours. You’d think I’d have trouble sleeping that night, but I didn’t — I was out cold for nine hours.
Nothing leading up to my extreme fatigue was strenuous, and I didn’t even exercise yesterday, so I can’t blame physical exertion. There was some emotional elementary-school drama throughout the week, a good amount of boy bickering, and the usual work and home balance challenge. Still, I can’t remember when I was so beat I couldn’t function. That’s what worries me.
I’m hoping this is all a fluke, and I’m just waiting now to see how the next few days measure up. (I won’t judge today, though, because Danny and I did walk 16 dogs at the Humane Society in 90-degree Florida heat, and I know the wiped-out feeling settling in my bones is completely justified.) Chances are I will not be back complaining about my worn-out state. This is probably just a moment of cancer panic, sure to pass, making me look a little looney for even giving it a second thought. But that’s what my cancer head does — it spins what’s likely just normal stuff into “what if?” woe. Same thing happened with a headache that lasted for six days, a bump inside my mouth, and a dozen other symptoms that have led me to doctors, dentists, and always … this blog.
Fellow cancer survivors, this confession is for you. Let it serve as a reminder that you are never alone.
Pray for Emily
She is only 16.
And she’s fighting leukemia.
If prayer is a part of your life, please say one for Emily.
This morning I had the realization that I am pumping poison into my own body.
Poison that can cause hair loss, sickness, joint pain, kidney problems, blood clots, bruising, chest pain, mouth sores, eye problems and much more.All of this is in order to save my life.
My precious little life.I’m just a kid who has not even begun to experience all that there is.
I’m waiting.
Waiting to explore, experience and live. LIFE. My life.Sounds melodramatic, doesn’t it. It’s not. It’s my reality. Mine and thousands of people like me. Which is the saddest thing.
That’s why this blog is so amazing to me.
Knowing that I have hundreds of people fighting with me, every step of the way is just incredible.So lets keep on fighting!
Hair Loss: How Did You Handle It?
Photo: "passamanerie", Flickr
It’s got to be one of the hardest things about cancer — hair loss! And I know my friend is hating the idea of being bald, just like most of us do, but still, she is handling it with such grace. Her technique: she cut her very long hair very short in anticipation of the big fallout. I like her approach, which is so totally different than mine.
I kept my very long hair around until the very last moment. I think I wanted so badly to not lose it, that I fought back by making not one single preparation. Silly me. The docs and nurses and every other breast cancer survivor I’d met told me it would happen, plus pretty much exactly when it would happen (about day 11-16 after the first chemo treatment), and still, I crossed my fingers tight and hoped like mad that I’d be the exception. And on the day of my second chemo dose (day 14), I wore a hat on my head to hold each hair in its place — it was starting to fall out in clumps, wash away in the shower, and it was pulling so hard on my head it hurt — when I should have accepted the inevitable and surrendered. I did surrender that night — cut off three ponytails, and handed the clippers to my husband and 4-year-old, who shaved while I cried — but only because I could no longer hold onto the hair I so desperately did not want to lose.
My friend has accepted the inevitable, and I love that about her!
How did you handle your hair loss?
Grateful, Plus the Curse of Cancer Treatment
Photo: LaserGuided, Flickr
I’m a grateful girl. Really, I am. In fact, I can’t even put into clear and concise words how very thankful I am for the breast cancer treatments that have kept me alive for five years. If I even try to put my thoughts into words, I promise you tears will stream down my cheeks. I’m about to turn 40 on Sunday, and WOW, I wasn’t sure I’d make it to that age, what with birthday No. 34 followed by such fear and uncertainty.
Just so we’re clear: I am so. very. happy. to be alive and writing this. I’m simply amazed by what medicine has done for me.
I’m amazed by what medicine is doing to me, too. Five years later, and it finds a way to make me a little bit miserable. Right now, actually, a lot miserable.
I’m covered in red, itchy, drive-me-crazy bumps on my shoulders, chest, back, and areas around my armpits. It happens every year, and it’s called something like UV Recall. Years after treatment, the sun reacts with my skin and the poisonous drugs, and the remnants of radiation, and sunscreen (I’m not sure about what order this all follows or if it’s one or several of these factors), and my skin pays the ultimate price. You’d think I’d have figured it out after all this time, but I haven’t, because sometimes (like last year at the beach), nothing bad happens. I find a sunscreen for sensitive skin, lather it from head to toe, and I’m just fine, maybe even a tiny bit tan, which is a treat for a fair-skinned gal like me. Other times (like this year at the beach), I find a sunscreen for sensitive skin, and, well, the bumps begin — just a few here and there, then some more, until they’ve climbed all over my body, making me more and more wacky by the day.
“Are you not so happy?” Danny asked me today.
Gosh, how I’m trying to be happy, plodding along through these summer days like everything is fine. But it’s not. I’m itchy and scratchy, showers hurt my skin, clothing bothers it, too, the Florida heat (it’s been like 100 degrees here lately) agitates every inch of me, and well, no, Danny, I am not so happy. (Add head cold to the equation, and you might imagine how poorly I really feel.)
The end is near, I know. The bumps will dry up and slowly disappear, and I will do what I always do — slink into the shadows at the pool, sit under an umbrella at the ocean, hide under the bimini of a boat. It’s no fun to be the mom always seeking shade and avoiding fun in the sun. I guess that’s why, year after year, I keep trying to jump waves, and find sea shells along the seashore, and splash in the pool — because I want to think cancer treatment won’t keep plaguing me. But it does, and it probably always will. And that’s just how it is. The very thing allowing me the pleasure of birthdays is torturing me, too.
OK, I’m getting a grip here. This skin ordeal is short-lived. It will consume about a week of my life (couple more days to go), and then I’ll move on. Maybe I’ll even be free and clear by Sunday, when I blow out 40 candles and celebrate another year of life.
See, I’m grateful. Really, I am.
Note: If you caught this post just as it published, you got a glimpse of what I look like. But the photo I put up at first has been taken down. It’s just too icky, and while it’s definitely educational, I decided to shield you from the yuck. And me, too. Looking at the mess in the mirror is enough. Online is just too much. And so I give you: flowers, pretty flowers.
Cancer Survivor Rebecca Needs Your Vote!
Vote right now! And thank you!
My new two-time-cancer-surviving friend Rebecca needs your vote. You see, she is trying to get a charity called Hair 4 You off the ground. It’s a great one, and the goal is that it will provide free wigs for kids and teens with medical hair loss. In order to make it all happen, though, Hair 4 You needs to become an official non-profit 501(3)c, which means Rebecca needs some funds.
No, she doesn’t want your money, just your vote (voting is absolutely free and requires only an email address and password).
So, can you pretty please stop by the Pepsi Refresh Challenge website and cast your vote for this 24-year-old, who would really love to win a $25,000 prize. Imagine what she could do to brighten the worlds of young people who just want to feel normal. And hey, you can vote once every day, so start now, then keep voting through June 30.
Rebecca thanks you.
I do, too.
Also, you should consider becoming a Facebook fan of Hair 4 You. This way, you’ll get updates on how Rebecca’s cause is coming along.
Time Heals My Wounds
Photo: tanakawho, Flickr
Time may not heal all wounds, but in my case, it definitely blurs them. Let’s talk chemo, that horrible thing from which most of my breast cancer wounds developed.
For each of my four dose-dense infusions of adriamycin and cytoxan, my sister delivered lunch to the pink pretend-leather recliner I called home for hours at a time. There was a yummy gyro, a delish tuna sandwich, a great turkey sub, and I can’t remember the fourth one — which is exactly my point: I can’t remember. Time has erased my memory of the food that so repulsed me I couldn’t eat it for years. Years!
It’s been five years since my chemotherapy ended. And just now have I realized that the thought of these foods does not make me want to vomit. They actually sound pretty appetizing.
All it took was time. The same time that has allowed my hair to grow back, my surgery and port scars to fade, and my fear of recurrence to morph into something almost unrecognizable.
Yes, my wounds have healed — not completely and entirely, but mostly.
I love that.
Surviving Cancer — and Its Side Effects
Oncology: a branch of medicine that deals with tumors (cancer).
I went for another cancer check-up this morning, the first since my 5-year cancerversary. Mostly, everything is A-OK — so well, in fact, that I now get to see my favorite doctor once a year instead of every six months.
But with the happy hooplah of surviving cancer for a good amount of time comes the fact that I need to start thinking about surviving the side effects of cancer for a good amount of time. There are certain issues that come with life after cancer. For me, it’s mostly heart stuff.
Three things that might affect my heart: the chemo drug Adriamycin (I had four doses), radiation (it was delivered right on top of my heart) and Herceptin (the wonder drug I received for one year). All three of these life-savers can compromise heart function over time. “You should be so lucky to get heart disease in 20 years,” someone once told me, “because it means you will have survived cancer for 20 years.” Yea, that doesn’t make me feel so relieved. In fact, it’s apparently cause for a consultation.
Someone is going to contact me soon to discuss survivorship issues, says my doc, and this person will notify my primary physician of potential concerns, too, so he can monitor me appropriately. I’m not overly concerned about this, really. I’m basically just thankful to be alive, with a heart that today is very strong. For now, that’s just enough.
Second Opinions Matter
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.
Jeans Cream Soothes Radiation Skin: Giveaway
jeanscream.com
My skin did pretty well during radiation. For weeks, nothing at all happened, and then at the very end of my 30+ days of treatment, a mild burn showed up. No blistering, though, or peeling, or anything else that made me horribly uncomfortable.
You (or those you know who are getting zapped) might not fare so well. Lucky you (actually two of you!), because right here, right now, you can enter to win a free tube of Jeans Cream. It’s a natural and revolutionary product that soothes and protects skin with high-potency vitamins and botanical extracts. And it’s not made by just anyone — creator and founder Jean is a two-time breast cancer survivor, and so she knows first-hand that this stuff really works.
Jeans Cream is good for more than just radiation-affected skin, it can effectively treat eczema, sunburn, diabetes-related skin issues, contact dermatitis, wound care, and you can even use it for daily moisturizing.
What are you waiting for? Leave a comment, and you just might score this valuable gift!
- Leave a comment and share why you need this cream!
- Leave your comment no later than 5PM ET on Wednesday, February 10, 2010.
- You may enter only once.
- Open to legal residents of the 50 United States, and the District of Columbia, who are 18 and older.
- One winner will be selected in a random drawing.
- Two winners will receive one 7-ounce tube each of Jeans Cream (valued at $45 per tube).
- Winners will be notified by email, so make sure to check next week to find out if you’ve won!
Cancer Books – 6 of the Best