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Tuesday, May 22, 2012

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!

Saturday, May 12, 2012

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.

Wednesday, May 2, 2012

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 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.