I think I hate Pinktober

I think I hate Pinktober and I feel kind of guilty about it. As a breast cancer survivor, shouldn't I be waving the pink flag and walking and running my feet off? Shouldn't I celebrate the fact that there's a whole month dedicated to breast cancer awareness? Instead, all month long I am filled with conflicting emotions. I'm grateful for every penny that is raised for research for a cure - but I'm so "aware" that it drives me a little crazy. Every single time I go to the grocery store during October, the checkout clerk asks me if I want to donate to breast cancer.  That's what they say, too. Not, "Do you want to donate to help find a cure?" Or, "Do you want to donate for breast cancer research funding?" NO - they say, "Do you want to donate to breast cancer?" And it takes all of my willpower to keep from saying, "No thanks, already donated a breast."

Don't get me wrong - thank goodness for the millions of dollars raised by pink-wearing NFL players, yogurt cups with pink ribbons and companies that give generously during Pinktober. It's just that I have a very strong emotional response to the flood of pink out there. I wish we could keep the message simple. Let's put those resources toward developing vaccines and treatments that don't make you feel and look worse than the disease itself.  Let's donate to fund research for a cure - because someday I'd really like October to go back to its original colors of red, gold and orange for Fall.

Risky Business

Remember when life was simple? Sure, maybe you were exhausted from taking care of the kids, or from working. Maybe your biggest worry was how to get rid of those extra 15 pounds that just wouldn't budge. Ahh, those were the days. Now we have to worry about weighing the risk factors of almost everything. Do I dare buy those non-organic berries even though the organic ones are 3x as expensive? How many supplements should I be taking to prevent a recurrence, and..... the mother of ALL worries - how do I determine whether the side effects of the medication are worse than the risk of not taking it?

Now I'm not talking about chemotherapy, because at this moment in time, the benefits far outweigh the side effects in the long run.  Those are the real statistics, folks. I'm talking about the other medications that so many of us are taking as follow-up prevention. Whether it's Tamoxifen, Tykerb (that's mine), Herceptin, Arimidex, Zometa (also mine) and a whole bunch more that I don't even know the names of, they ALL have side effects. By now you know that I'm the queen of talking about side effects.  Sure, my hair has completely grown back  - Hallelujah! - but all these drugs are powerful and they ALL have side effects.  Some of them slam you right from the start, some of them creep up on you over time, but read your package inserts people! They don't make that stuff up. It all comes from somebody somewhere reporting those symptoms.

So what do you do when your doctor says she thinks maybe you should stop taking DIHBIHM (DrugIHateButIsHelpingMe)? Perhaps it's time to consider the risks.  I hate considering risks. First of all, I don't have a good history with them. I had extremely low risk factors for having breast cancer, and we all know how that turned out.  Risk factors are statistics and I hate statistics. My husband loves them. He takes comfort in them and understands them.  Personally, I just see the small numbers and assume they have my name on them. What's a little heart trouble compared to going through chemo again? What's a little bladder spasm or horrific muscle pain among friends?

The good news is that you and your doctor really can make informed decisions that weigh the real risks of your side effects versus potential benefits. The information is out there and your oncologist knows the numbers and can help you navigate your choices.

TOP 5

1. Discuss exactly how debilitating your side effects are with your doctor. Don't sugarcoat it because you're afraid to stop taking the drug. Be honest.

2. Talk with your doctor about the real risks associated with stopping. Make sure you are comfortable that you've been given ALL the information.  Perhaps schedule a separate appointment where you can focus just on this so you're not feeling rushed.

3. Discuss your fears openly with your doctor.

4. Ask about alternative drugs. Sometimes there's an effective, but perhaps more expensive, alternative to what you're currently taking.

5. Don't assume that if you stop taking the drug, the cancer will come back.  You may be able to stop for a while and then go back on it, or maybe you've taken enough to get the majority of the benefits already. Once you've made the decision, don't be afraid to change your mind and revisit the question later. You're a woman - it's your prerogative to change your mind.

Thank you

I want to express my appreciation for the people who reach out to me after finding my blog. Your stories mean so much to me and I'm grateful I can offer even some small help for what you're going through. Thank you all for your kind words and I will continue to do my best to share what I have learned.

Cancer is Scary - no matter what stage or age

I recently spoke with a woman who told me she had been unsure about contacting me because she wondered whether her own experience with breast cancer was bad enough to warrant reaching out. She felt guilty about coming to me because she felt that she hadn't suffered enough compared to what I had gone through.  I felt sad hearing her describe how her age (over 50) and her treatment (lumpectomy and radiation) made it seem like she should be having an easier time or feeling lucky that she hadn't needed anything "worse". As though a lumpectomy and radiation are a piece of cake. HAH. Only if the cake is filled with burns and fatigue that makes you feel like you're wearing a lead suit and the icing reads: This may be your last birthday. Pretty messed up cake.

Where do we get these feelings? Sure, it could be worse. Does that mean we're lucky if it's not? Is any cancer victim supposed to feel lucky that their diagnosis isn't worse? These are things that well people say to us because of their own fear. It's their own need to rationalize and make it all ok. I actually had a "friend" tell me I was lucky I was bald because now I didn't have to deal with washing and styling my hair all the time. Are you kidding me?

Regardless of your diagnosis, age or treatment plan - cancer is terrifying. Period. You're dealing with something that isn't very well understood, and leaves you with great uncertainty about the rest of your life. All cancer treatments are debilitating in many ways. We read about mastectomy and chemotherapy and we accept those as being particularly awful to deal with, but that doesn't mean that other treatments are easy. No way. Lumpectomy is surgery. Surgery that changes a part of what makes you look like a woman. It doesn't matter how old you are or how good the reconstruction, or how small the scar - still life-altering stuff. Radiation knocks you down, no matter who you are or how well your skin heals. You have to go every single day except during the weekend and walk into that room. The password to get into my club is cancer. That's all.

Sure, you have to find ways to get through the day without feeling sorry for yourself.  Sure, you have to remind yourself of the positives, blah blah blah, but some days just suck and there's no way around it. Some days you just have to give yourself permission to whine and feel sorry for yourself, regardless of how other people expect you to act.

Top 5

1. When you feel the need to whine, accept it. Don't judge yourself. You're going through hell and if your friends or family don't get it or are tired of hearing it, find a support group or email me.

2. Set a time limit for wallowing. Don't let it overwhelm you. Though it's important to express those feelings, it's not helpful to let them take over. I will say to my husband sometimes, "Can I just whine for  10 minutes?" Then I go through all the crappy things I feel. All the pains (big and small), fears and whatever else is going on. His job is to just listen and then say something like. "Oh honey, that sounds awful." No offering advice. No tips on how to change my mood or fix anything. Just empathy.

3. Reach out to someone who can understand. Sometimes it really does have to be another cancer victim. Your regular friends and family may not be able to hear you during those moments because they hate to hear that you're suffering. They love you and want it to be okay. They need it to be okay and when it's not - its freaking scary for them.

4. Have a response ready for times when people say something stupid like, "You're lucky." Even if you don't say it out loud. How about, "I guess I feel somewhat relieved that I don't have to...."  Of course, what you really want to say is, "I don't think anyone who has cancer feels lucky, you idiot." That probably won't go over too well, though.

5. Understand that the people who know and love you are scared and sometimes overwhelmed too. Maybe tell them what you need from them - including sharing that it's really hard to feel like you're not allowed to have a bad day. It's too much pressure to feel like you're supposed to go through treatment and put on lipstick and a happy face all the time. It feels lonely to have to put on a cheerful face for the world when sometimes you just need to get under the covers and cry a little.

Cancer Survivor - What's in a name?

Recently I've been thinking about the words we use about cancer and cancer patients. They're words of war: battle, fight, survivor. On the one hand, we read that so-and-so is a 10 year survivor. On the other, we read of those who lost their 5 year battle with cancer. We engage in a fight against cancer, and people refer to themselves as pink warriors. As though the next President will land on an aircraft carrier in the middle of a hospital (see the absurdity of the metaphor?) and declare victory.

A friend of mine and I were recently commiserating about the term survivor, in particular. First of all, the word makes it sound like the battle or hardship is over. That we survived - emphasis on the "ed." Neither of us feels as if it's over and done with. I don't believe anyone who has had any experience with cancer ever feels like its truly over.

The whole fight thing really bugs me too. As though the cancer really cared about my personality. If it did, it wouldn't have dared to take up residence in my body to begin with. I think the flip side of the battle cry is the subtle hint of blame if things don't go well. Like somehow, if you're not smiling through the pain, wearing lipstick to your mastectomy, flying to Switzerland to try some experimental drug and meditating six times a day, you're not doing enough to "fight" your cancer. Guess what? Cancer doesn't discriminate. It affects the mentally strong and weak alike. It doesn't care if I take a nap or run a decathlon today. It's a sneaky sucker that will take advantage of anything it can, and when we throw something at it one way, it will morph and hide until it finds another way in. It is many different diseases with one name - and they're all out to get you and me, the vegans and the yoga instructors, the country singers and celebrities, the poor, and the rich.  That's just the ugly truth  - so please don't tell me that dressing it up in pink and calling me a survivor or a warrior or a sister is going to make one bit of difference.

Of course, we have to find some way to feel powerful in the face of an adversity that is mostly out of our control. I just feel that we haven't quite figured out the perfect words yet. My friend says she feels more like a cancer victim than a survivor. I get that.  Victims of a random act of violence. One that affects not just our bodies, but our families and friends as well.

Even Wikipedia recognizes that the term "survivor" is loaded: "The cultural ideal of a survivor may add to individual patients' distress if the patient is unable or unwilling to live up to the ideal. The ideal survivor is bravely committed to mainstream medicine and optimistic or even certain of a physical cure. He or she is open about diagnosis and treatment and becomes an educated, empowered medical consumer. The ideal survivor, like a superwoman who simultaneously manages her home, family, and career, struggles valiantly to prevent cancer from affecting loved ones by appearing, behaving, and working as much as possible. Once the immediate crisis is past, the person may feel strongly pressured to donate time, money, and energy to cancer-related organizations. Above all, the ideal survivor does not die of cancer. People who publicly conform to this ideal are given social status and respect."

That's a whole lot of pressure from two words. I mean, who doesn't want to be an "ideal survivor"? However, living up to that ideal, just like any other, is a losing proposition. So, I challenge everyone to find new words for us to use.

Here are my top 5 so far

1. Cancer Victim
2. Cancer Kicker
3. Cancer Endurer
4. Cancer Outlaster
5. Cancer Coper

The oncologist's waiting room

I'm sitting here in the waiting room of my oncologist's office trying not to stare at each person as they walk in. I can't help wondering what news each one will get today.  Good, bad? Status quo?

The woman who looks to be in her eighties is gaily dressed and smiling. She chats with all the nurses as they go by. They know her first name. One even gives her a hug and cups her face in her hands to say hello.  How long has she been coming here?  How long do you have to be a cancer patient to get a hug like that? I check in with myself. Do I feel encouraged by the sound of her laughter? Or am I disheartened, imagining myself so many years later, having spent countless hours in these leatherette chairs waiting for my doctor who is always an hour late? The truth is - I feel both encouraged and discouraged. Just a few more conflicting emotions that cancer brings to the table.

I hope to be a joyful 80 year-old woman wearing pink lipstick on a Monday morning; and I pray I won't have spent most of that time in the outer office of an oncology suite reading "Oncology Today". Okay, so I haven't actually seen a magazine with that title, but there probably is one.

The year following a breast cancer diagnosis is literally filled with doctor's appointments. It's all a person can do to keep up with each one. There's the surgeon, the oncologist, the radiation oncologist, maybe a naturapath or an acupuncturist, constant lab draws, and then all the regular doctors you have to see every year anyway. It's exhausting. Any day where you don't have to sit in a plastic chair feels like a vacation.

I tell people that having cancer is a full-time job. So if you're already working, now you have two jobs. And the pay for the second one stinks. The hours are grueling and the work environment is hazardous to your health. On top of that, even though you are forced to take your shirt off almost every day at this job - you can't sue for sexual harassment!

So,  my top 5 tips for dealing with the doctors visits:

1. Bring your own reading material. Seems obvious, right? Bring my book (if it ever gets published) or "People" magazine or anything else that may distract you from wondering about what will happen behind door number 2. Somehow we always assume there will be new magazines in the waiting room and there never are.

 2. Wear clothes that are easy to change into. You want to get out of there as soon as possible, so easy-on, easy-off. Particularly the shoes. Since one of the indignities is being weighed every single visit, I make sure I can get as close to naked as possible in 2 seconds.

 3. Assume you will actually see your doctor close to an hour after your scheduled appointment time, and then you can be pleasantly surprised when he's early. Build that extra hour or more into every appointment so you're not adding stress to your schedule by being held up. If, by some miracle, it all goes according to plan one day - you'll find yourself with a one-hour vacation. Grab a Starbucks or a quick walk. Stop and smell the roses.

4. Do not give any credence to the nagging feeling that you may get bad news today. That fear and anxiety is your new Siamese twin, but just because you are worried, doesn't increase the chance that something will be wrong this time. People only remember when those bad feelings ended in bad news; they somehow always forget all the times those feelings were absolutely false and misleading. The relief erases the memory.

5. Understand that once you have cancer, all visits to all doctors may induce sleepless nights and worry. Forgive yourself the fatigue that may follow. My oncologist recently told me that the reason I get so tired after every blood test is that my body became conditioned by chemo - so that every time my port is accessed, I respond as if I had chemo. Lovely. At least my hair follicles seem to have forgotten!

Should I trust my oncologist?

I've discovered something disturbing by lurking around in cancer forums and chat rooms. Many women are afraid to trust their doctors. They troll the Internet searching for clues to make sure they're getting the right information. It's a scary world out there, and sometimes what they see conflicts with what their doctors are telling them.  But how does an internet search stack up against a qualified physician? Let's take a look at how long it takes to become a medical oncologist:

Step 1 - 4 years of undergraduate work
Step 2 - 4 years of medical school
Step 3 - 2-4 years of residency
Step 4 - 2-4 years of Fellowship
Step 5 - Pass the certification test
Step 6 - Maintain education and get re-certified every 10 years

So, after 12-16 years of higher education and clinical experience, observation and testing, only then can you call yourself a board-certified medical oncologist.

Not even I spend the equivalent of 12-16 years researching on the Internet. Look, you have to be your own advocate, ask lots of questions, get second opinions and keep accurate notes on what you're told and what your diagnosis and condition are, but at the end of the day, you have to remember that your oncologist went into the field to cure people just like you. 

After one sleepless night spent reading about alternative therapies and the supposed miraculous properties of blueberries, I asked my oncologist about all the information I had found. She was very patient and went over each idea with me; and at the end she said something I have never forgotten. "Andrea, we are all working to find a cure and a cause for cancer. All of us in the field. Believe me - if there's credible new information out there - it's not going to be a secret.  We'll be yelling from the rooftops." The real problem is that nobody knows what causes cancer in some people and not in others. Nobody knows what your trigger might have been and nobody knows yet exactly what will flip the switch off in every single case.

We may find out 10 years from now that 12 cups of green tea, plus 4 pounds of blueberries, a shot of vitamin D, 4 sessions of acupuncture plus 1 hour of sun per day can prevent cancer - who knows? Or maybe it's something nobody has even considered yet. Right now your oncologist is most likely operating with the best information at hand. That said, if you feel like you are not being listened to - find someone else.

Being diagnosed with cancer is terrifying and it seems like the information changes all the time. We find it incredibly frustrating that our oncologists don't have all the answers. In my own experience, nobody is more frustrated by this than our own doctors. They want to heal us. They want us to keep our hair and our breasts and our sanity. They want to save our lives - and when things go wrong - they suffer too. Not as much as we (or our families) do, but they suffer.

So, my top 5 tips for finding the right doctor are:

1. Ask everyone you know for recommendations. I mean EVERYONE. Go to a support group in your area and ask everyone who their doctor is and if they like them. Ask your gynecologist, your dentist, your co-workers. Check out the local chapter of the American Cancer Society and ask for resources. When you start getting the same names over and over again - that's your short list.

2. Choose a doctor who specializes in breast cancer. If there's nobody in your area with that particular specialty, then ask what percentage of their patients have breast cancer. Choose someone with the most experience in that area.

3. Make sure you feel comfortable with the nurses and office staff of your oncologist. This is not your surgeon, whom you only have to deal with for a few months - your oncologist is going to be a huge part of your life for the next year or more, and how you feel in the office can contribute to how much you trust the care you're getting.

4. Get a second, or third, or fourth opinion. If you have any doubts, call around and see someone else. Even if the person you choose is supposed to be the best - if you have doubts, meet with another doctor and find out if his or her information is the same. Be warned: in some cases, there are different courses of treatment and you may have to decide for yourself (without the benefit of all those years of medical training) which is the best course for you.  If you get different opinions, discuss them with the doctors.  Keep your discussions open and without accusation. Your goal is to gather information so you can make the best, most informed decision.

5. Once you've made the decision you think is right - go with it. Don't second-guess yourself. It's pointless. Keep yourself informed and ask lots of questions, but try to remember that breast cancer is crafty and nobody has all the answers.  If they did - we'd all be cured by now and we'd be going on 3-day vacations instead of 3-day walks.

How Breast Cancer Changed My Life

I know, I know - so cliche. The thing is, though, last week I was interviewed by my local paper - The Santa Barbara News-Press and at the end of the interview, the woman interviewing me asked, "How has having breast cancer changed your life?" I answered,"In every single way."

I've been thinking about that for about a week, and it's true. Having breast cancer changed all of me: body and soul. It's not that I've changed my life. I still eat way too much chocolate, watch tv, read the same newspapers (including the News-Press - yes, I'm shamelessly pandering). It's more that I have been changed.

Let's start with the obvious - my body. I lost those pesky 7 pounds I'd been fighting for years. Nothing like a little chemo diet to get you started. And of course, the more obvious - I'm not only minus those 7 pounds, but a breast as well. No, my breast did not weigh 7 pounds - I wish! My hair might have though. It was pretty darn thick and luscious. As you know from my previous posts - not so anymore. Now it's thick and kind of like a poodle's. I also sport a Port-a-Cath in my chest near my collarbone for easy infusion and blood draw access. Yup - I'm very accessible. In addition, one of my toenails has never quite recovered from it's bout with chemo and at any given moment, I'm likely to burst into flame from the early medically-induced menopausal hot flashes. That's just the outside.

The less obvious - I slowed down. Almost every breast cancer survivor whom I've met has said the same thing. It's not that I changed my religion, or found yoga (in fact, I hate yoga). I didn't give up coffee or anything else, for that matter (except Diet Coke - my son made me do that). I just found that I can enjoy a slower pace now.  It's not exactly - take time to smell the roses, slower - but it's different. Life is short and that stupid, pink, ribbon-wearing elephant takes up a lot of room in my house and mind so there's less room for clutter.

When you undergo treatment for cancer, people always say, "You're so strong." Or, "You're so brave." The truth is, most of us are strong and weak, brave and absolutely terrified. And that's okay. We learn the truth about ourselves in those dark moments - and sometimes the truth about those around us.  I dealt with some of it well, and some of it horribly - just like everyone else. I definitely learned how to say, "I'm sorry." That and, "I have to lie down." Not entirely sure which one I said more.

So, when we moved to heaven - otherwise known as Santa Barbara - I could walk on the beach, collect sea glass, and be happy with that. For the first time, I didn't feel like I had to be outwardly productive all the time. It turns out quiet time is productive too, but it was during my year of nothing-but-cancer that I learned that. When your life is filled with doctor's appointments, blood tests, infusions, and side effects, you simply don't have the time to do everything you used to do. So you learn to do less, and that seems to stick.

Then there's the not-so-obvious. I became a writer. My first blog was on www.caringbridge.org and was just to keep my friends and family up to date on my treatment and progress. Then I realized that all the information I had gathered along my breast cancer road needed to get out there. I wanted to share all the tips and hints that the amazing doctors, nurses, survivors and my own research had taught me. Never in a million years did I think I could write a whole book. Turns out - I can. I hope it gets published and out to the women who need it some day, but at the very least, I learned I can write.

Cancer changed my family as well. I won't speak for them (because they hate it when I do that) but, without a doubt, we are all changed.

Day One - Shock of lifetime

Little discussed fact - it's often in the mammogram waiting room that you realize you have cancer. It's in the way the tech gets quieter and more gentle. It's in her voice when she tells you to please wait because the radiologist would like more pictures.  When I went for my mammogram and afterwards the nurse told me that the radiologist would like to do an ultrasound, I think you could probably hear my heart drop to floor. It landed and shattered like glass. Of course nobody says anything specific yet. It's just the big, scary pink elephant in the room with the word CANCER on it in bold letters.

So, the first thing I learned was never, EVER go to a mammogram alone. This is my mantra to women I meet. Get a bosom buddy. You just never know. Of course, you know this now. My dear readers, you know how your life changes in a second. Breast cancer is one of the only diseases where the patient comes in feeling quite well, but the treatment makes her sick.

In my book, I end each section with my top 5 tips. So, for dealing with the first shock of diagnosis, I offer the following TOP 5.

1. DON'T panic. I know, you're shaking your head right now but you really don't need to panic. You have to function - so you have to swallow and breathe and be smart.

2. Rally the troops. Think of anyone you know who may be able to help you navigate the next steps. You'll need doctors first and then maybe help with the kids, the house, the cooking and cleaning, time off from work. Start making a list of people to call. This is not the time to be a hermit.  I know that some people like to keep this information quiet, but here's the problem with that: Our medical system is set up so keeping it quiet may hurt you in the end. You need to know who the best people are, and you may need help to get in to see them because the best ones are busy. Yes, it matters, so name drop like a talk show host when you call the office to get an appointment. Ask everyone you know for referrals. The more support you have during this time, the better off you and your family are going to be. People will want to help if you ask them. Don't be shy. The first step, though, is to find the right doctors.  Do whatever you have to do.

3. Breathe - this is just the beginning. At this point, you may not know much yet. There are tests and more tests to come. You can do this!

4. STAY AWAY FROM THE INTERNET! Yes, I realize the irony of this statement, but aside from this blog - this is not the time to start researching everything that's ever been posted about breast cancer. The statistics are scary and they don't apply to you yet. In fact, this is good advice for the whole of your treatment. Not that I'm worried about the competition, but random chat boards can freak you out for no reason. Believe me, I know this from experience. I hold my computer responsible for many sleepless nights.

5. DONT PANIC! Yes, it's worth saying again. You CAN do this.

Breast cancer sucks but you can deal with it

I don't want to say "welcome to my blog" because if you've found my page you've either been diagnosed with breast cancer, know someone who has, or been sent by my mother.  Instead, I'll say "thanks for being here." I started my first blog in 2009, after I'd been diagnosed with breast cancer. It was my way of keeping all my friends and family informed of what was happening to me. I wrote through surgery, chemo and radiation. It was my boo-boo and boo-hoo report. I tried to explain what I was going through and what I was learning along the way. A year ago, cancer-free, I decided to turn what I had learned into a book. The how-to book I had tried to find when I was first diagnosed. The What to Expect When You're Expecting for breast cancer.

While my book, Bald is Better with Earrings - Your Breast Cancer Companion Book - looks for its publishing home, I wanted to make sure that I got the information out there. The tricks and tips that I learned through my experience to help get you through. Come back here often or sign up for updates so you know when I've posted new information. All my advice has been cleared by oncologists, so you know it's medically sound. I'll tell you about the surgery, healing, being bald, first day of chemo, how to protect your skin for radiation and anything else I can think of to help.

Here's the first thing you need to know - I'm here and I'm well.  Every stage is treatable and you CAN get through this horrible time in your life.