October 31, 2008

Q13 Fox Series Part Four: Early Diagnosis Is The Key

Angela King, Q13FOX News

October 31, 2008

Breast cancer can kill. Every year, it does - more than 40,000 in 2008.

And if it doesn't conquer you, Katie Hogan says," I like a radio that's on in your head all the time that you can never turn off, and the best that you can hope for is try to turn down the volume as much as you can to give yourself a break."

But what about your children?

"How do I talk to her? How do I explain what's happening to me without scaring her?" says Nicole Taylor. Of all the distractions - the dark moments - this is the most difficult. Just ask Anna Schumacher.

"You stop fearing for your life. You start fearing your child is going to grow up without a mother."

It's a revelation Niicole knows all too well. She lost her mother to a brain tumor at age six. Now, a dose of déjà vu, except this time, it's Nicole's turn to be the calming force.

"We get these difficult questions from our kids: is your cancer never coming back or are you cured mommy? It's a difficult answer because the truth is we don't know."

But while questions are Nicole's quandry - confirmation is Courtney Preusse's heartbreak.

"The increase in estrogen that would be created by a pregnancy would make the cancer come back without a doubt," says Courtney.

This has not been an easy conclusion for Courtney to accept. She wants to have children and she could chance it.

"So that's where my mind toys with my heart and i think maybe it won't come back," says Courtney.
And that's where Andrew comes in. He says," It doesn't do anything for me to gain a child and lose my wife."

"If I bring a child into this world and I die five years later - it's a fact. I've been to my friends' funerals. Women my age die," says Courtney.

But the option of surrogacy is breathing new life, into the Preusse's dream of becoming three.

For those still fortunate enough to have children, cancer still has it's repercussions and it's questions.

Nicole once asked, "How do I get my son in his car seat when I'm not supposed to lift five pounds for six weeks after surgery. These women said 'jelly beans'. That's what worked. I had a pocket full of jelly beans for a year and a half and that's what got him in and out of his car seat."

So It's the little things, and each other, that help these young survivors get through. For Anna, it's the love of her little one.

"He shaved his head when my hair started coming out last week. He thought if mom's going to have a shaved head, then I have to have a shaved head. Then he also put my lipstick on, and I'm like -- we got to start slowing this down!"

And these ladies are in no mood to rush the moment. Family means so much.

"These wonderful milestones that other people take for granted," says Anna.

And yes - cancer has taken many lives and too many friends. It kills. It can crush your spirit and consume your every thought. But if there ever was a case study in love and support --the perfect example of what it means to be there for someone -- cancer's not the conqueror. These women are.

Members of the Young Survival Coalition and the Northwest Young Women Survivors say early diagnosis is the key. They urge women (men too) to perform those self examinations regularly, and have those mammograms.

Q13 Fox Series Part Three: Breast Cancer: Taking A Toll On Your Body.

Angela King, Q13FOX News

October 31, 2008

October is National Breast Cancer Awareness month. Each year, more than 11,000 women under the age of 40 are diagnosed with the disease.

All month, we've been introducing you to an extraordinary group of young breast cancer survivors.
They are members of the Young Survival Coalition and the Northwest Young Women Survivors. Each one lives in the Seattle area. All are tied together by common hopes and fears.

In Part I of our four part series, we met members who are suffering from the final and worst phase of breast cancer - Stage 4 metastatic. In Part II - it was women who have streamlined their professional lives to help fellow survivors.

This time, we discuss a topic all of these young survivors can relate to - the toll the disease takes on your body, and how to deal with what you look like after chemo or a mastectomy:

"The day I was diagnosed, I didn't believe I would be here."

It's been said cancer is one of the scariest words in the English language, especially if it runs in your family.

"On my mother's side, I'm the fourth generation to have breast cancer. My father's side, I'm the third generation," says Beth Morris.

But what if you don't run that risk.

Nicole Taylor says,"There's only 20 percent that's actually genetic so 80 percent of women do not have a genetic history."

And with most women being diagnosed well after their 40th birthday - another warning: youth doesn't always work in a woman's favor. Just ask Tammy Tillingham.

"The doctor told me I had a benign tumor. She said I was too young, so I actually waited a year until I went back and it had grown from three centimeters to nine."

"I think if I would have been monitored since age 30, I'd only be stage one instead of stage 3 where it's in my lymph nodes," Nicole says.

These are some of the worst "what if's" any woman could contemplate. How different would my chances be had I been diagnosed sooner? How nice it would be to have my body back the way it was.

"I didn't have reconstructive surgery, so every time i look in the mirror I see scars. I'm lopsided. It's difficult sometimes, but what can you do," says Tammy.

And what do you do if *you* are only part of the equation?

"Whether you're dating, you're married or you're breaking up, because that often happens through cancer treatment," says Anna Schumacher - a breast cancer survivor.

Heather MacMillan says," I had that moment on the couch like, how can i ever hold onto this? And of course, my husband looked at me and said, 'Are you crazy!' "

But what if you don't already have that steady partner by your side?

"I think all the women who are single and have gone through this have some fear," says Beth
Anna agrees. "Little things like, do I tell them in the beginning that I've had breast cancer or that I've had a lumpectomy or mastectomy? What do i tell them? Do I wait? What will happen?"

But there's no question - these are pros when it comes to optimism. Just leave it to these ladies to find purpose in one of the most devastating disfigurements a woman can suffer.

Beth is already married, but she says other survivors, "have found it to be a really good way to test the mettle of the men they've dated. It's helped them get down to brass tacks very quickly and extract themselves from the ones they're not going to have a future with."

And these women know what a gift the future is. The "what if's" here are not necessarily fraught with fear thanks to family, friends, and each other. It's funny how things can sometimes add up.

"It's like you're a transformer," says Anna.

Beth says her daughter thinks her scar is entertaining.

"My son thinks women with two breasts are really weird, so he's going to be very disappointed," says Anna.

But disappoint - these women don't.

Next week, we will bring you the fourth and final part of our special series. The topic - how do you break the news to your children, and keep your family calm while you're trying to do the same.

Q13 Fox Series Part Two: Life Continues On...

Transcription of the second interview Q13 Fox did of young breast cancer survivors --

Angela King, Q13FOX News

October 24, 2008

What do you do when you learn your life will never be the same?

"Within two hours, I knew I had breast cancer. They told me right then," says Nicole Taylor.

Every three minutes, a woman will face that very moment.

Carrie Sieberg says," You can picture the room, the doctor. You can picture everything. I don't think I'll ever forget that. It was horrible. It was horrible.

Washington state has the highest rate of breast cancer in the country. While mastectomies and chemotherapy are not always required, there's no way to get around the initial fear.

Carrie says, "We're the only ones who really get it."

But to get it while your in your 30's like Carrie and Nicole is not the norm. Most women won't be diagnosed until well after their 40th birthday.

"We have to deal with what older women don't have to deal with. Maybe they have a husband who's retired or grown children who can take care of them. For me and a lot of women, we still have to work," says Debbie Cantwell, a breast cancer survivor.

"I cleaned toilets when I was going through chemo," says Debbie.

Carrie had to continue on too. She's a physical therapist. Nicole was diagnosed when she was a kindergarten teacher. But just as that day they were diagnosed - a change. Simply working to pay the bills was no longer enough.

"I knew I wanted to do something for the cause. Something for the heartache, the anxiety, and the anger of watching so many of us being diagnosed and losing 18 friends in the past two years to breast cancer all under the age of 45," says breast cancer survivor Nicole Taylor.

So now Nicole works at Susan G. Komen For The Cure. It's the world's largest network of cancer survivors and a leading supporter of breast cancer research. Carrie is still a physical therapist, although her focus now is helping fellow survivors feel better.

Carrie says," Women feel like pain is part of the deal."

Patients in recovery often suffer from tightness and scarring following breast cancer operations. Muscles can be weakened by the radiation.

Things like Chemo - that you leave feeling worse. But when you leave physical therapy, you feel better and they're aren't a lot of places you can go when you have cancer where you can leave feeling better," says Carrie.

As for Debbie - she's feeling much better now. She's still not a big fan of housework. But the copyrighter by profession has made compassion her expertise.

"I've sent fully prepared meals to families so when they come home from the hospital it's easier."

Debbie is the founder of Breast Cancer Sisterhood.com - a charity helping survivors with day-to-day living when the daily discomforts of cancer make it difficult to do basic chores.

Debbie says, "I have to help these women ... I have to do something ... I have to make life easier."

And life continues on - not the way these women planned, but what else can you do? They can hope and help those who've yet to make it through - the women worried about today and the uncertainty that accompanies tomorrow.

And who better to guide them or to understand their fears than the one's who have been there, and who are still here.

"I'm just grateful I went through the experience and came out the other side doing alright," says Debbie.

Q13 Fox Series Part One: Young Breast Cancer Survivors Tell Q13 FOX Their Personal Stories

Q13 Fox News Online Staff

October 17, 2008

October is National Breast Cancer Awareness month.

According to the Young Survivor Coalition more than a quarter-million American women under the age of 40 are living with breast cancer.
And each year, more than 11,000 women under the age of 40 will have to face the devastating diagnosis.

Over the next few weeks, Q13 FOX is introducing you to an extraordinary group of young breast cancer survivors, all from the Seattle area, and all tied together by common hopes and fears.
More than 4,000 women in our state will be diagnosed with breast cancer this year. Nearly 800 of them will die.

Jill Cohen, breast cancer survivor recalls, “It took me months to get used to the fact that my cancer had come back and it was everywhere. In my bones .. from my skull all the way down to my knees.”

Jill Cohen has stage four, metastatic. Jill says, “having stage four disease is like having a merry-go-round where you're always on it. Sometimes you're on the pony going up. Sometimes you're on the bench hanging out but you never get off.”

Jill, along with Katie Hogan and Kristen Haugen, are holding on. In fact, they're living. Thanks in part to a life-line ... on-line -- the Young Survival Coalition and the Northwest Young Survivors who meet twice a month at Gilda's club on Capitol Hill.

Katie says, “we finally get to meet women in the same age group ...with the same condition because sometimes it's less common for young women to advance into metastatic.”
Seattle has the highest rate of breast cancer in the country, the entire state ranks third.

Katie says, “we represent the dark side because we are in the place that women don't want to find themselves.”

Jill adds, “but when the sun is shining ... You can forget for a few minutes that you have this thing growing inside your body.”

The women have been kind enough to open up ... They 'are' complicated ones ... and not just because of the disease but what about motherhood? What their bodies look like after surgeries ... and how that affects their psyche ... their husbands - how do they bring the subject up?
They'll tell you first hand throughout the month

Next Friday, we'll take a look at how some of these ladies are helping each other through their careers and work.

Done with drugs

Yesterday I finished the two week stint of intravenous antibiotics, which I self-administered through my port-a-cath. No more staying up until midnight, waking up early and being home at 4 PM just in order to shoot myself up.

Actually, as these things go, it was rather uneventful. My port stayed accessed, limited discomfort there. The antibiotics gave me some loose stools but thankfully the pain meds are constipating, so they kind of evened each other out.

The home health care nurse came by at 8:15 AM to de-access my port, and was able to take back some paper and styrofoam boxes to be re-used. Since according to federal law, medical supplies cannot be returned to the provider after being dispensed to the patient, I would like to donate the sealed medical supplies to a medical charity doing work overseas. Any leads?

October 28, 2008

2 weeks with the port accessed

Today is the two week mark for my port being accessed. The home care nurse is supposed to come over today to de-access it and then re-access it for the remaining few days I need to take IV antibiotics. I gather that the protocol is not to leave a port-a-cath accessed for longer than 14 days. Thankfully Swedish Home Health Care sent along lidocaine so that any pain could be minimized.

It's been a royal pain in the patoot to administer the IV antibiotic every 8 hours. Since I prefer to stay up late rather than wake up early, I've been on the 8 AM - 4 PM - midnight schedule. But staying up until midnight has it's own risks and it turns out to be hard to wake up in time to give myself the 8 AM dose. I've become a fan of late night TV (Frasier, Family Guy, Sex and the CIty when I can find it). It helps keep me awake. The other night I fell asleep on the couch and woke up at 12:15 AM with the certain notion that I had forgotten to do something.

I hope more or less on time is more or less okay.

October 25, 2008

Q13 Fox series on young women with breast cancer

You may recall that a few weeks ago I was part of a series on Q13 Fox about young women with breast cancer. Q13 continues to air more segments; there will be four total.

If you click on Q13 Fox's home page, you'll see a video box. Search breast cancer or scroll through the video titles for "Young Women Coping With Breast Cancer Part 3."

October 22, 2008

The unexpected hospital stay, day 3

After being woken at 5 AM for another dose of antibiotics, I was able to get back to sleep. Then the usual -- shower, breakfast, clean clothes and lots of time on my hands with nothing to do. I was REALLY bored Thursday until the afternoon, when I the second parade of people began, this time of doctors.

The hospitalist who admitted me on Tuesday had handed me off to her colleague for the rest of my stay. What is a hospitalist? One site defines it as follows --

A hospitalist is a medical specialist who provides quality medical treatment to individuals while they are in the hospital. Because hospitalists don’t maintain a private outside practice, their time is devoted solely to caring for hospitalized patients.

Hospitalists are based in the hospital and specialize in all aspects of a patient's care - from admission until discharge. To do this, hospitalists manage and coordinate the entire inpatient episode of care, working closely with the patient's primary care physician and/or specialists involved.

Not only do hospitalists offer the patient on-site and around-the-clock access to a physician, but also afford themselves an in-depth understanding of and commitment to, individual patient needs. Hospitalists are also familiar with key departments and individuals within the hospital, allowing for prompt connections with other healthcare personnel.


So. The second hospitalist had warned me on Wednesday that I would be staying another night. On Thursday I saw the infectious disease specialist she had called in on my case. He said I could go home that afternoon but would need to continue intravenous antibiotics for two more weeks. Well, that was fine with me if it meant I could sleep in my own bed next to my husband with my dog curled up at our feet. I was discharged around 6 PM with several prescriptions and a lead to Swedish Home Health Care, who would provide the IV therapy at home.

I wish I could say that my discharge was as smooth as my admission. Unfortunately the whole thing ended on a sour note. We packed up all my stuff and stopped at the pharmacy on the way out. It was almost 6:30 PM, I was looking forward to breathing some fresh air and Rik and I were both hungry. The pharmacy stop should have been quick and easy. But the clerk couldn't find my prescription (called in an hour earlier). Then she wanted me to wait 30 minutes while the pharmacist made it up. It's a tube of ointment in a box, what's to make up? I asked if I could transfer the prescription to a pharmacy closer to home. Sure, says the surly clerk. Just have the pharmacy call us. This woman was not terribly interested in customer service and my fuse was a little short. We made the call, the Rite-Aid near us was happy to help, and we left. Fresh air at last!

After a quick dinner out, we stopped at the drugstore to pick up the prescription. Bonus! Because I had transferred the prescription to them, I received a $30 voucher good on any merchandise in the store (except prescriptions, but what can you do?). At 8 PM we were home and by 9:30 I was in bed snoozing. Three very long days.....

The unexpected hospital stay, day 2 continued

The rest of the morning was slow. I watched part of a movie, read my book, looked out the window. I couldn't go for a walk down the hallway because I was in isolation due to the staph infection. However, the afternoon was a constant parade of visitors. A and A, G and her daughter R, C, then Rik. It was lovely to be able to visit with people, to take my mind off the infection, and to not be bored out of my gourd.

Rik got us both some dinner from The Mediterranean Kitchen, one of my favorite places on Broadway. And after dinner members of Dunava, my choir, came over to sing. You should have seen the four women clad in yellow isolation gowns and trying to turn pages of music while wearing rubber gloves. We closed the door and tried to sing quietly. Our leader Dina asked us each to choose favorite songs to sing and M brought cupcakes from Trophy for our snack. Despite the room's terrible acoustics, we were able to hear one another clearly. It was a delightful evening for me and I am so grateful that they were willing to bring our rehearsal to the hospital so I could participate.

After the Dunavites left I watched the rest of The Phantom of the Opera (a much better film than stage show in my opinion) and fell asleep around 11:30.

The unexpected hospital stay, day 2

On Wednesday morning I got up and ordered breakfast, saw a nurse, met the pharmacist, and even got to take a shower and wear my own clothes! There's little I hate more than being stuck in a hospital gown, even though I had asked for pajamas, which were promptly supplied. In my experience, women are hardly ever offered pj's while in the hospital. Who cares if they are sizes too big and inches too long? Pajamas do a better job of covering your butt than open-backed gowns.

Speaking of the pharmacist. I take a number of prescription meds and had the presence of mind to ask Rik to bring the original containers to me. On Tuesday night, a nurse offered me Zocor, a drug I do not take. So I refused to take it. I did take all my regular meds from my own bottles. The next morning the pharmacist explained that hospital practice was to dispense meds to patients from the in-house pharmacy and would I go with the flow, so to speak. I told him about the Zocor mixup and he told me it was their substitute for another drug I take that Swedish doesn't stock. (Why hadn't anyone told ME this?) Well, I didn't see any reason to try a new drug with unknown side effects for only a few days, so I told him I'd rather take my own.

Then the pharmacist told me that the nurse would have to dispense any drugs I take and watch me take them. The nurses would observe that I was taking lovastatin from my own supply and double check the bottle. I asked about pain meds. I had a low fever the day before and it took 90 minutes to get some tylenol for a headache. We negotiated that I would ask the nurse for pain meds if I needed them and that I would wait a more reasonable 20-30 minutes for someone to bring it to me. If it took longer, I had his permission to take from my own supply.

Oy. All this before breakfast!

The unexpected hospital stay, day 1

I think I posted that last Tuesday at 2:30 I saw the physical therapist, who told me to call my doctor; at 3:30 I saw my doctor (who graciously squeezed me in between previously scheduled patients); and by 4:15 PM I was in an isolation room at Swedish Medical Center. That's the way our health care system is supposed to work. When you get sick, all the players and pieces work together to get you the care you need.

It took several hours after my admission to the hospital to actually get my port accessed and start getting the intravenous antibiotics. From 4:15 PM to 9 PM, to be precise. Given the five hour wait, I am glad that I wasn't sicker, although I would imagine that if I had had a sudden collapse they would have speeded up the process. I actually got to eat dinner with Rik (oh that yummy hospital food!).

While waiting, I made numerous phone calls to find someone to take care of the dog. I guess because it was the middle of the afternoon, no one was answering their phones. Rik had taken the bus home and he fed and walked Pumpkin, reached our friends the G's to see if they could watch the dog in the evening, and found someone to drive him to the hospital. (I had the car. Not only did I have the car, when I parked it in the hospital parking garage, I carefully noted where I had parked and wrote directions on how to find the car for him. Am I organized or what?)

So RIk and I ate dinner together, and my friend D dropped my for a visit. We chatted until almost 10 PM, she left me a DVD to watch, and I went to sleep. End of day one.

Home antibiotic update

I have been feeling fine and "shooting" myself up with intravenous antibiotics every 8 hours through my port since last Friday night. It's going well, although unfortunately antibiotics continue to produce their usual side effect of loose stools/diarrhea. Thankfully my pain meds have a constipating effect, so I am able to minimize the impact.

Every 8 hours for me means that I don't want to get up at the crack of dawn, so I stay up late -- 8 AM, 4 PM, midnight. It's definitely interfering with my sleep!

We had a very busy weekend, what with our annual sukkah party on Saturday afternoon, a 75th birthday party for Rik's "other" mother S, overnight house guests, a trip to the airport and the ever-present antibiotics.

October 17, 2008

Cellulitis

I am home now after spending the past three days at Swedish Medical Center inpatient with a staph infection. It will take at least two more weeks of IV antibiotics to clear and we don't know if it entered my body through my portocath or another way.

The infection showed up Tuesday in the wee hours as hot, red, tender blotches on my lymphedema arm. At 2:30 PM I went to the physical therapist, who recommended I see my primary care doc. At 3:30 PM Dr. K said "I remember what happened last time*. This looks like cellulitis, so let's admit you to the hospital. No, you may not drive home and get Rik. Your job is to get yourself up to the hospital right away." By 4 PM I was walking in the door to Swedish and by 4:15 they had me in an isolation room. I was hooked up to IV antibiotics by 9 PM and discharged Thursday at 6 PM.

MayoClinic.com defines cellulitis as follows:

"Cellulitis (sel-u-LI-tis) is a common, potentially serious bacterial skin infection. Cellulitis appears as a swollen, red area of skin that feels hot and tender, and it may spread rapidly.

Skin on lower legs is most commonly affected, though cellulitis can occur anywhere on your body or face. Infections on the face are more common in children and older adults. Cellulitis may affect only your skin's surface — or, cellulitis may also affect tissues underlying your skin and can spread to your lymph nodes and bloodstream.

Left untreated, the spreading infection may rapidly turn life-threatening. That's why it's important to seek immediate medical attention if cellulitis symptoms occur."

I will post more as time permits and I get caught up with the rest of my life.

*BTW, the last time means after my lumpectomy in 1999 when the surgical drain left in my axilla (armpit) became infected and developed into toxic shock syndrome. Luckily it was identified by an infectious disease specialist just as it became life-threatening. So you can see why my health care providers take the risk of infection seriously.

October 13, 2008

Metastatic Breast Cancer Awareness Day

Last year the Metastatic Breast Cancer Network declared October 13 to be Metastatic Breast Cancer Awareness Day. (I'm not sure why, but why not?) In the past year they have had a number of cities around the country join on.

In that spirit, here are some statistics I found on metastatic breast cancer --

• No one tracks how many US women live with metastatic breast cancer.

• The American Cancer Society says that 27% of female breast cancer diagnoses are stage IV (metastatic) disease. (source)

• The five year survival rate for women diagnosed with metastatic disease is 27%. (source)

• National Cancer Institute (NCI) research for breast cancer has been flat or reduced since 2003 (source)

• Only 29% of all NCI breast cancer research goes toward treatment. (79% goes toward everything else – prevention, early detection, causes, biology, survivorship) (source)

• As of 2006, of the roughly $5 billion NCI funding, only 1% goes into research pertaining to metastasis of any kind, much less breast cancer metastasis. (source)

• NCI projects 40,080 women will die of breast cancer in 2008, and that 450 men will die of breast cancer in 2008. (source)

Cancer trump card


My friend W also blogs about living with metastatic breast cancer on The ABC Cancer Diaries. Like my blog, hers is mostly for family and friends. She gave me permission to use the cancer trump card she created. Here is what W has to say about it --

"What IS a Cancer Trump Card (CTC) you ask?

It’s that card that makes everything okay, that trumps everything because — well, I’ve got cancer. That simple, no explanation needed. All the little annoyances of life — like waiting on line, or having to stand in the subway during rush hour or wait extra long for that darn G train.
Although life isn’t fair, (I learned that one years ago, see exhibit A — me having breast cancer at 33 years of age), sometimes you just wish that when you have a life-threatening illness for seemingly no reason (other than my genes) that you can just have some other things a little easier.
I guess it’s sort of like having my own personal cancer genie. You know — the toilet overflows and you’re on your way out and you’re running late. ***POOF*** I just wave my CTC and like magic it’s fixed!!

But, oh no. Life just doesn’t work like that. Instead of things getting easier, they just get more and more complicated.

Well, I don’t really need a CTC, since I am doing just fine, though some days are better than some. But just for fun, it might be fun to make one just at that moment when things start to get a wee bit hairy.

POOF! My CTC!"

October 10, 2008

Things people say to cancer patients

I hope you find this as funny as I did. A friend found it on the internet....

Things people say to cancer patients

(Get ready...)

"It might turn out to be a blessing in disguise."

Really? It's a freaking BRILLIANT disguise then. Because right now this blessing looks a lot like the second leading cause of death in the world today.


"We could all get killed crossing the street tomorrow -- you never know."
I agree that we have no idea how long we've got. But I'm pretty sure that cancer is a little more life threatening than crossing the street. Which would you rather face when you wake up tomorrow? Cancer or crossing the street ten times? I thought so.


"Breast cancer? It's a good one to get I've heard -- one of the better ones."
Good. Then let's hope you get it too. This is like telling you that it's good that it was your youngest son who got permanently disfigured because you liked him the least! Yes, there are worse cancers. But there are no good cancers.


"You'll be a better person for having gone through this."
Which means I'm an arsehole right now does it? I was actually quite happy being a cancer-free arsehole, thank you very much.


"You could step off the curb tomorrow and get hit by a bus."
Not a good analogy, it's like I already got hit by the bus and now its backing up over me.

"You gotta think positively."
OK, I'm positive I had cancer, and I'm positive it wasn't fun.

"You'll be fine."

"So, you're fine now, right?"

"My grandmother died of that."

"God gives you what you can handle."


"Can I see what is going on under that hat?"

"If anyone can beat it, it's you."

"If it's not your time, it's not your time."

Then why bother with the surgery and treatment?

"Life is not fair."
Thanks for the heads up.

"Every cloud has a silver lining."
Huh?

"It's just a bump in the road."
Living with a cancer diagnosis, losing your hair, getting chemo, radiation, gaining weight, having hot flashes, being depressed and anxious is not a bump in the road -- it's a major mountain.

"Don't worry."

"You're lucky you didn't lose weight on chemo."

"Remember Lance."

"You gotta be like Lance."

"Lance beat cancer."

"Just look at Lance."

"You look good bald."

"So, was the cancer bad?"

No, I had the good kind, remember?

"This is a treatable disease."
Have they found a treatment for your insensitivity yet?

"It's just hair."
It's only "just hair" when it's not yours.

"You know you can eat (fill in the blank), it's supposed to kill cancer cells."
Great tip, thanks.

"You'll be fine, you have a great attitude."
If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. What does that mean?

"If you really want to live, you will. Just never give up. When people give up, they die."

"How do you know if it's working?"
If it doesn't work, I die.

Young survivors interview

Here is the link to the young survivors interviewed on Q 13 Fox. It will be up for one week only.

I give kudos to the producer and management of this station for understanding not only how important it is to talk about the impact of breast cancer on young women, but for also getting how hard it can be to live with advanced disease.

October 08, 2008

Baking the onion cookies

Tonight begins the fast of Yom Kippur, the holiest day of the Jewish year. My father used to make a special family recipe every year -- onion cookies -- which we ate to break the fast. This morning my sister called to say that she had the first batch in the oven and she couldn't tell if she teared up from cutting the onions or from the memories of our dad. I felt the same way when mixing up my half-batch.

Food is, after all, the great ice-breaker. We bond over family meals. Sharing a hot cup of coffee or tea and talking with a friend brings us closer. And we welcome guests by extending our table figuratively and sometimes literally (you should see the card table next to the dining table in our house).

Thanks, Dad, for teaching us how to cook and to enjoy doing it, for getting the recipe from your mother Mary z"l, and for setting such a good example of making people feel welcome with food.

For the rest of us, may we be sealed in the book of life for a good year: g'mar chatima tova.

Q13 Interview update

I just heard that the interview taped yesterday for Q13 Fox will run on Friday, Oct. 10 during the 7 AM and 8 AM hours. It will also appear on the web site for one week.

October 07, 2008

Interviews

Today I participated in a group interview of young survivors for a series of features on breast cancer on Q13 Fox. The first one should air on Thursday, October 10 sometime during the 7 AM hour and again during the 8 AM hour. It will appear on the web site as well for a week.

There were two other women with metastatic disease and we had our own, semi-private interview where we got to talk about living with chronic cancer. I think it went well.

We three also applauded the reporter and producer for having the courage to talk about "the darker side of pink," metastatic disease. The producer told us that his manager was adamant that they needed to include our story since it so often is ignored in reporting on breast cancer. Now that's someone who really gets it!

Maybe best of all, no one wore pink.

October 06, 2008

People Don't Die of Breast Cancer - They Die of Metastatic Breast Cancer

I loved this article about how important it is for doctors and researchers to treat women with metastatic breast cancer as though they are living with a chronic disease, even though it can be a deadly one.

October 03, 2008

Fabulous Feature Friday

I've been discovered (again). AngiDe found me in the blogosphere and asked if she could profile me in her weekly feature of a cancer survivor. Thanks, Angie, for helping to spread information about living with breast cancer.

October 02, 2008

Croatia Fest

Dunava sings at Croatia Fest this Sunday, October 5, from 4:30-5 PM at the Seattle Center's Center House. Catch my high notes!

October is here: Think before you pink

October has arrived again and you know what that means -- the pinkness of Breast Cancer Awareness Month. Don't get me wrong, I think it's terrific that we have news coverage of breast cancer and that more people's attention will be directed to this issue. But so much of the pinkness is geared to early detection and not to treatment or research for metastatic disease.

The whole pink marketing thing bugs me tremendously. Why do people need to lick and mail in yogurt lids, buy merchandise, wear pink ribbons. If you want to support research into treatments for metastatic disease or for a cure, the best thing to do is GIVE MONEY. Your donation, in any amount, will go directly to the charity and their projects. No need to buy that pink Kitchenaid mixer, English muffins or Barbie doll unless it's something you want anyway.

Here's food for thought -- "if shopping could cure breast cancer it would be cured by now."

Breast Cancer Action urges you to ask some critical questions before opening your wallet for pink-ribbon campaigns:

How much money from your purchase actually goes to the cause?
What is the maximum amount that will be donated?
How much money was spent marketing the product?
How are the funds being raised?
To what breast cancer organization does the money go, and what types of programs does it support?
What is the company doing to assure that its products are not contributing to the breast cancer epidemic?

In other words, Think Before You Pink. If shopping could cure breast cancer it would be cured by now. The breast cancer movement needs action from people like you to create real change, the kind that will create a better future for women with, and at risk for, breast cancer.

Still bandaging

I got a new gizmo last week from the physical therapist. It's an under-sleeve, designed to be worn under a new type of compression garment. This under-sleeve is apparently made with lots of lycra. The PT asked me to try sleeping with it, so I did on Monday night. Unfortunately the thumb hole was too tight and the swelling backed up into my hand again, after it had measurably moved up my arm to my shoulder. Aargh!

I tried it a second night without putting my thumb through the hole and although it was awkward, it was more comfortable for sleeping than the bandages. Unfortunately, it doesn't seem to be providing enough compression. So I bandaged last night and drugged myself to sleep, will do so again tonight.

I see the PT again on Friday and hope that this lymphedema flare up will be more under control after another session of manual lymphatic drainage.

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I dance with cancer. Oy!