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On cancer, waiting, and walking away

Walking into my cancer center waiting room is one of my most sobering experiences. I enter this room -- jam-packed full of men, women, and children -- every three months for a breast cancer follow-up. It never gets easier. It always startles me, stirs my emotions, makes me realize how so many people are touched by such a treacherous and all-consuming disease. The fact that I sit in this room, that I am one of these many people, still doesn't seem real.

It's been almost three years since I got a phone call from a surgeon declaring, "You have cancer." I didn't believe it then. Even after all I've been through -- surgery, chemotherapy, radiation, and more -- I hardly believe it now. But it's real. I have scars and new hair and a whole new set of worries to prove it.

Walking into that waiting room proves it's real. There's nothing like it. There's also nothing like walking out, with a clean bill of health and the promise of three more months.

Warm that watermelon for an antioxidant boost

If you're in the mood for upping your antioxidant levels -- antioxidants can cancel out the cell-damaging effects of free radicals, thus lowering the risk of cancer -- here's one quick and easy tip for you: keep your watermelons warm.

Research shows that watermelons stored at room temperatures have much higher levels of antioxidants (beta-carotene and lycopene) than those kept chilled in the fridge. Warm watermelons are even better than fresh-picked melons.

One caution: once cut, watermelons must refrigerated. So try to enjoy your watermelons as soon as you slice and dice them. Then keep your leftovers cool.

Source: Good Housekeeping, July 2007

Thought for the Day: See how the flesh grows back

I'm in another hospital lobby -- this time waiting while my three-year-old son has surgery to repair a hernia.

So I'm back to reading a magazine. This time I brought my own not-so-outdated publication -- The Oprah Magazine, April 2007. And as I sit here flipping and turning the pages, there is so much I want to tell you.

I'll be back with more. But for now, think about this:

"...see how the flesh grows back
across a wound, with a great vehemence,
more strong
than the simple, untested surface before.
There's a name for it on horses,
when it comes back darker and raised: proud flesh.
as all flesh
is proud of its wounds, wears them
as honors given out after battle,
small triumphs pinned to the chest."


Jane Hirshfield, From What Binds Us

I have a few small triumphs pinned to my chest -- they show in the form of surgery scars and radiation tattoos and puckered skin where a port once lived. Proud flesh. Stronger than the once untested surface. My honors for having survived a battle.

Florida Gator victory sparks vivid cancer memory

I often note the passage of time according to events. My husband does it with songs -- if he hears Cheap Trick's I Want You to Want Me, for example, his mind takes him back to a buddy's basement in Jersey where he played pool with a bunch of other 10-year-old boys.

Music just doesn't do it for me. It has to be some sort of happening for my mind to travel back in time -- something like the Florida Gators SEC victory over Arkansas on Sunday.

Last year, the Gators were also SEC champs. And the year before that too. And I think I'll know the status of this team at this same time every year for as many years as I survive cancer -- because two years ago, I sat cooped up in a University of Florida hospital room trying to recover from the effects of chemotherapy and the only real excitement piped into my cubicle of a room was the thrill of a big Gator win.

It was the same kind of win the team repeated the following year -- the win that marked my first year of survival. And now, the Gators win again. And so do I.

While the defending National Champions celebrate their accomplishments and head into the first round of NCAA tournament play in New Orleans, I celebrate my accomplishment -- surviving cancer for two years. And when the Gators play in whatever game comes their way next March, I will be reminded of that same hospital room, that same dark and dreary time in my life. And then I will marvel at the power of time and the unlikely collision of cancer and college basketball.

And then I will pause, reflect, and head straight into my third year of survival.

Go Gators!

Chemo is tough stuff

Chemo is tough stuff. That's what my oncologist told me the day I tracked her down on the phone and told her how awful I felt. I was weak, dizzy, pale, and as close to incoherent as I'd ever been. I was so out of sorts I was convinced I would jump out of my skin at the very moment this doctor implied all I needed was a firm grip on reality.

"Do you have enough support?" she asked. "Yep," I replied. I told her my mom lives right around the corner, my sister just a few miles away. I told her friends were delivering meals and my husband was coming home from work whenever I called for him. Help was just a phone call away, and I had plenty of it. What I didn't have was medical guidance about how my body was tolerating chemotherapy. That's why I needed her.

I hung up the phone that day having accomplished nothing. And I woke up the next morning barely able to walk. I crawled into my kitchen, grabbed a banana, sprawled out on the floor, inhaled some nutrition, and called my mom. I told her I needed to have my blood examined.

My mom transported me to my oncology clinic -- we had a genetic counseling appointment there anyway so it was convenient timing -- and before long, I was hand-delivered a mask and was swiftly escorted to my very own hospital room where I stayed for five days.

The day I was admitted to the hospital, my white blood counts were 700. My body was not tolerating chemotherapy. And I'll never know why my oncologist didn't know this, didn't call me in for an evaluation when so many signs were presenting themselves, didn't offer me more than her steadfast declaration that "chemo is tough stuff."

Yes, chemo is tough. And there are all sorts of expected side effects of the dreaded treatment that patients must endure. But there are many effects patients should not have to suck up, effects that warrant immediate medical attention and can be alleviated with the right intervention.

It took days of antibiotic treatment and a blood transfusion for my body to recover from its chemotherapy attack. I often wonder what would have happened had I toughed it out at home. I suspect the outcome could have been tragic.

If I ever have the occasion to preach about the dangers of chemotherapy, which is what I am doing here, I offer a firm warning about how difficult the treatments can be, how anyone with any string of worrisome side effects should seek medical help immediately, how any oncologist who doesn't respond to an outright cry for help should be fired.

I learned many lessons from my chemo crusade. I learned how to better help myself, and I learned to report right to the emergency room the second time my blood counts plummeted. I learned to demand the care I deserve, and I found an oncologist who is a warm and caring partner in my pursuit of health. And I learned that chemo is tougher than I ever imagined, too tough for some -- like me -- to go it alone.

Sunday Seven: Seven bits of hope sent from a survivor

A friend of mine with breast cancer just sent out an update e-mail to friends and family. She began her message with an apology for her recent lack of communication. But she assured us all that she's been out of the loop not because she's felt sick or tired. It's because she's been too busy with normal life. And that's a good thing, she says.

This friend wasn't so sure how she would fare -- both physically and emotionally -- when she was first diagnosed with cancer. But she seems to have done a champion's job of rolling with the punches. Sure, she's had ups and downs. But she is overwhelmingly positive and hopeful. And jumping off my computer screen as I read her e-mail were at least seven bits of hope that tell me she is doing just fine despite all that is unbelievably hard about breast cancer.

My friend just had her first infusion of Taxol. A breeze, she calls it. One. So easy on her body -- two -- that she headed right out and took her daughter communion dress shopping. Her little love looked beautiful, she wrote. Like a mini-bride. The mother of the mini-bride then -- three -- turned a sad moment into a comforting one when her daughter asked, "Mommy, who do you think will bring me wedding dress shopping?"

"Me of course, why?" responded my friend.

"Well, you know, if that thing that we don't want to happen happens and you die, then who would bring me wedding dress shopping?" this little girl asked her mom.

Holding back tears, mom reassured daughter she would definitely be the one taking her wedding dress shopping. She'd be dancing at her wedding too, she declared.

My friend also shared in her correspondence -- four -- that she plans to walk, and maybe run, in her local American Cancer Society Relay for Life event in April. And she has already rallied a bunch of support -- five -- and is thrilled to have a group of co-workers, and even the principal at her school, forming a team in her honor.

"I am so lucky to have such a wonderful school family," wrote my friend who plans to raise oodles of hope -- six -- when she begins collecting funds for Relay for Life.

What inspires me most about my friend's e-mail is the light and happy manner in which she spouts off all the good in her life -- seven -- when there is so much at this very moment that is downright difficult, like entire days spent in an infusion room, plummeting red blood cells, aching bones and joints, and tingly fingers and toes.

I think my friend knows this phase of her life is temporary, that she will overcome all obstacles, that she will really fare just fine both physically and mentally throughout this ordeal. And this must be what powers her through the days she amazingly calls -- normal.

Hospice allows pet to stay with owner

A poodle named Lucy refuses to leave her owners side and has become very popular with the nurses and visitors. The patient Maggie Bellamy is staying at the hospice while she is undergoing cancer treatments.

Lucy likes to snuggle up on the rug near Maggie's bed and goes for short walks around the grounds. Ms. Bellamy said "I thought it was incredible when I was told that Lucy could come and stay with me in the hospice. She frets over me, but is very well behaved and everyone fell in love with her. She is good therapy for other patients too."

Lucy is the only dog you will see at this hospice. Dogs belonging to Pets as Therapy also pop in with their owners to visit patients.

Fraser Meek, manager of the hospice in-patient unit, said "We are happy to welcome a patient's pet to be bought along either for a visit, or to stay in the room where possible. Visits from gentle pets help the patients relax and add to the homely atmosphere of the hospice".

What a nice story!

Breast cancer cluster closes ABC studio in Australia

An ABC news team in Australia abandoned its Brisbane radio studio yesterday after an investigation revealed there is something about the workplace causing breast cancer.

It's not clear what the cause may be, but the five-month-long investigation concluded a breast cancer cluster is related to the office environment.

Twelve women who worked at the Brisbane Toowong office had been diagnosed with breast cancer over the past 11 years. Eight of these women worked in the newsroom. Most had been there for more than five years.

ABC managing editor Mark Scott would not move his staff earlier this year when 100 staff members walked off the job in July, demanding relocation. He said it would take evidence -- not just suspicion -- of a breast cancer cluster for him to agree to relocation. Now he has evidence.

The investigation report shows women who worked at this office reported breast cancer at a rate 11 times higher than the general working community.

In addition to the relocation, all female staff at Toowong office were offered free mammograms and free counseling services during the investigation. Yesterday, Scott extended the offer to women at other ABC sites in Australia.

Breast cancer cases keep surgeon busier than ever

My sister recently ran into the surgeon who removed my breast cancer tumor almost two years ago -- on December 3, 2004. He asked my sister how I was doing, recalled the unprecedented rash I developed from the latex and Tegaderm tape used during my lumpectomy, and then talked about how terribly busy he has been.

This surgeon -- who spends countless clinic hours with women whose breasts are somehow diseased and then spends day after day in operating rooms trying to remedy these diseases -- said he is amazed and at how many breast cancer cases are consuming his time. It's sad -- the amount of women showing up with breast cancer -- but there is a silver lining to this cancer cloud, because according to this surgeon, the vast majority of these breast cancer cases are early stage. This means they were caught swiftly and quickly. And for the women behind these cases, there is a good chance of long-term survival.

And so maybe all the pink and all the press surrounding breast cancer is working. Maybe it's inspiring women to pursue self-breast exams, clinical exams, mammography, and other screening options. Maybe all the persistence and passion about breast cancer is the reason for this early detection -- the key to a good prognosis.

My surgeon closed his chat with my sister by telling her to call him if anyone in our family ever needs anything. But he told her he hopes he never has to hear from us. My sentiments exactly.

Be aware of the side effects of the drugs you are taking

It can be a bit overwhelming and scary to read all the side effects on the sheet that the pharmacist gives with the medicine that has been prescribed by your physician. There always seems to be so many side effects that CAN happen. The thing is that most of the side effects are not life threatening and are mild. Some medications however do have severe side effects that if you are not aware of can prove to be deadly. This shouldn't happen of course if you are listening to what your doctor says and are being monitored closely.

It is important to read all the side effect information yourself and know what to look out for. In case something does happen that is abnormal, you will notice it sooner than later, and you can call or see your physician immediately.

In a report issued Tuesday, the Journal of the American Medical Association estimates that 700,000 people a year, especially the elderly, experience adverse drug events that lead to emergency room visits. In patients 65 or older, one-third of the drug reactions were caused by three medicines: Coumadin, a blood thinner, insulin and Digoxin, a heart medication.

The important thing to remember is to ask about any other drugs you are taking and the interactions with the newly prescribed drug. The report I saw on this issue mentioned that about 30 percent of us are taking around five pills every day.

So ask the nurse at the doctors office to explain the side effects and you can also talk to your pharmacist about the drug. I went and got a prescription filled the other day and the pharmacist asked me if I had any questions about that specific drug. I didn't this time, but I liked that he asked.

Some chemotherapy side effects warrant immediate attention

I was in the emergency room the other night with my three-year-old who was experiencing a mysterious leg pain that resulted from a bad case of strep throat. It wasn't serious enough to warrant swift movement from the waiting room to an actual room and we sat in a holding pattern with a crowd of other patients, some of whom were still waiting after Danny had been treated and released. I was told patients are served in the order in which they arrive but also according to the seriousness of their complaints -- which takes me back to the night I was in the ER with a fever, headache, sore throat, and sore gums. The night I was given a mask and was immediately escorted from the waiting room to a private room where doctors and nurses treated me for neutropenia -- a condition caused by chemotherapy and marked by a drop in neutrophil levels, a condition that puts chemotherapy patients at great risk for infection. This was the second time I went to the hospital for neutropenia. Both times I was admitted and treated for five days.

And so sitting in the ER reminded me about how serious chemotherapy side effects can be. And it makes me want to caution all chemotherapy patients to never dismiss the signs that the body is suffering -- to never tough it out with the hope that a good night's sleep or a few days rest will straighten everything out. Because it may not -- and the end result may be tragic.

All chemotherapy patients should be briefed by their medical teams about when to call for medical assistance. For me, a temperature of 100.4 was the magic call-for-help signal. And twice, I called for help -- once in the middle of the night. But any symptoms , and definitely a combination of symptoms, are cause enough for a simple phone call. So don't delay. Don't excuse warning signs that your body is struggling. Don't second-guess your decision to notify a medical professional about your symptoms. Just call. It could save your life.

Uninsured: the hard wind batters the brittle tree

Health care coverage for working Americans is like a brittle tree in a hard wind -- and the larger limbs are beginning to snap. Between the years 2000 to 2005, 6.8 million more people became uninsured according to the latest report from the U.S. Census Bureau's Housing and Household Economic Statistics Division. Current data estimates 46.6 million people are without health insurance coverage. As employer-based health insurance continues to fade, government programs are taking up the slack -- up to a point. But given the lack of funding, there is only so much that can be offered.

In a statement issued by the Center for American Progress, "These problems did not just happen: they resulted from flawed economic and health policies which force Americans to work more for less. When it returns after Labor Day, this Congress should act to mitigate these problems by passing a straightforward minimum wage increase and extend health funding for programs like the State Children's Health Insurance Program. Moreover, policy makers should recognize the need for major change, such as providing affordable health care to all Americans and taking action to address growing income inequality."

Some are calling for a government-based universal health care system that guarantees health care coverage for all Americans. Others are suggesting a mix of private and public health care coverage. What ever the solution, there certainly needs to be one.

We can start with a shift in perspective and change in expectation. If you are working full-time for a company, presumably your efforts are helping that company make a profit. Health insurance coverage should not be viewed as a luxury benefit, nor should the largest burden of health insurance premiums be shouldered by the employee whose earnings just meet living expenses. Yet, this is happening every day in this country. The hard wind continues to batter the brittle tree.

Personally, I am not sold on a government-run, government-backed universal health plan simply because I have covered too many horror stories about rationed care in other industrialized countries. It seems a combination of programs might be the solution but the government and our elected officials certainly need to be held accountable for implementing programs that insure all Americans.

American Public Health Association Georges Benjamin is quoted by United Press International as saying, ""This is the worst news we've had all year. Our nation is not secure if we're not healthy."

Living beyond the reach of cancer begins with one small port

And so the countdown begins -- 22 days until my port comes out. On September 15 at 9:00 AM I will report to the basement of Shands Hospital at the University of Florida where I will be doped into a semi-conscious state and wheeled into an operating room. Doctors and nurses will open the skin near my collarbone and while watching their own procedure on a monitor hanging overhead will remove my port and all connected tubing. They will close my skin, leaving an incision that will quickly become a scar -- and a physical reminder of the cancer than once settled into my breast and the drugs that ran through my veins in search of it. It will be my battle scar -- second in importance only to the marks that criss cross my stomach and mark the spot where two big baby boys stretched my skin to unimaginable proportions.

The state of my port has plagued me for some time now -- ever since I knew chemotherapy was fast approaching its end. I have wanted to keep it in place just in case I need it again. And I have wanted to get it out just in case I never need it again. And when it came down to making a decision, I decided taking it out was best. So I can move on. So I can move forward. So I can move away from cancer. I know I'll never move completely away from it -- and that's okay. I don't want to forget my journey. I just want to live beyond its reach. Beyond the port that pops out from under my skin. The port that if needed again, can simply be put back in place.

And so my soul searching -- chronicled in the following two posts -- is over. My port is coming out.

Simple moments are reminders of what cancer can't take

Right now -- at this very moment -- my two boys have turned our living room into a mess of blankets and pillows and stuffed animals. They put on their jammies and closed all the blinds and are pretending it's bedtime. But it's actually lunch time, so they have spread out paper plates and plastic silverware and bags of chips and boxes of crackers all over the floor -- on top of all their bedding. I delivered them their lunch platters and lemonade and there they sit, in the room next to me -- chattering away, stuffing their little mouths, full of life. And I am in awe -- of the simple joy that comes from a living room camp-out and picnic, of the beauty these children bring into my life. I am mostly in awe of the fact that no matter what cancer takes from me -- my hair, moments of health, my innocence -- it cannot ever take this very moment from me. And that makes today a happy day.

Sexual predator uses chat room cancer story to lure young girl

When you are in a chat room, belong to an email discussion list, or for that matter, read a blog, you cannot be certain all of the time the other person is who they are representing themselves to be, and on some occasions, they are frauds with evil intent.

When it comes to blogs in the cancer community, given time in reading the blog, I have found most people are who they say they are -- but when it comes to chat rooms, there is a higher probability that the identity of the participant could be different than the person is in real life.

In Leeds Today, a news story has been published exposing a pervert who pretended to be a boy named Ricky with cancer, for the purposes of luring a teenage girl into a sexual encounter. Ricky was really a 45-year-old married man named Glen Marwood. But the 17-year-old girl believed his chat room story and began to offer emotional support and encouragement as Ricky went through cancer treatment. She became attached to Ricky and felt the relationship was developing romantically. Which is what Marwood was hoping and had planned.

Continue reading Sexual predator uses chat room cancer story to lure young girl

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