Words of wisdom for the newly diagnosed

A dear friend of mine asked me to compile a list of things to know when facing a cancer diagnosis. A friend of hers is newly diagnosed with breast cancer, and so my friend turned to me for advice for her friend. While I am by no means an expert, I have walked a mile or two in the pink shoes, so here’s my list. Readers, please chime in with your advice.

1. Don’t panic. I know, easier said than done. Hearing the words “You have cancer” is scary, no doubt about it. No matter where you are in life, it’s the one thing no one wants to experience, and yet more and more people are finding their lives turned upside-down by cancer. The American Cancer Society estimates that more than 200,000 women in the United States will face a breast cancer diagnosis each year. Looking at your diagnosis, treatment, and surgery options may seem overwhelming, so break it down into manageable pieces.

2. Keep a notebook. Being a cancer patient is a full-time job, and like many other jobs, it involves a lot of paperwork. Get a 3-ring binder and some divider tabs and set up an organized system to track your pathology reports, insurance statements, notes from doctors’ appointments, and research. Ask for copies of everything from your doctors. Like it or not, you need to become your own advocate.

3. Figure out how much information you’re comfortable with and go no farther. I’m an info junkie and have a deep-seated need to know as much as I can about my cancer. I ask lots of questions at my doctor’s appointments and want to look at the ins and outs of all the issues. I watched videos on youtube of the different surgeries I would have (bilateral mastectomy with tissue expanders then DIEP reconstruction and several revisions to the reconstruction.) While a deluge of info works for me, others may prefer to work on a “need to know” basis and to take sips instead of gulps when it comes to the facts & figures of cancer. Decide what level you want and don’t venture beyond that unless you’re comfortable doing so. Also figure out how much of your story you want to share. I didn’t set out to write a blog, but found it to be the best way to update my peeps on my status. Once the cancer morphed from the star to more of a supporting role in my life, I realized that blogging about it is incredibly therapeutic for me. That’s a personal choice, however, so don’t feel that you need to broadcast your status.

4. Educate yourself so you can be the decision maker, then follow your gut. This is your show, for better or worse, and you must be the one to run it. While it’s perfectly acceptable to solicit opinions and to ask your docs what they would do if in your shoes, ultimately the decisions that must be made are yours. And there will be a lot of decisions to make. I remember wishing there was a manual for this part of the cancer “journey” that would tell me what to do. Alas, no such manual exists, so it was my job to weigh the facts when deciding on surgery and treatment. The decisions (lumpectomy vs mastectomy, chemo or no chemo, Tamoxifen for 5 years to reduce recurrence odds or roll the dice?) are big, and the stakes are high. Do your homework then trust your instincts.

5. You gotta love your doctors. Or at the very least, you gotta respect them. Even if your personalities aren’t aligned, you want to feel confident that he/she is the best at what they do. If you don’t love him/her or feel unsure about his/her abilities, keep looking. Ask for recommendations from people and doctors you trust, but then decide for yourself if it’s a good fit. One of the oncologists I visited came very highly recommended; everyone and their brother had been to this guy and respected him to the moon and back. I wasn’t crazy about him, though, and didn’t relish the idea of a long-term relationship with him. And his office was depressing — morose decor and outdated, muted colors that dragged me down every time I was there. This made me realize that I needed to look at the whole picture — does the office make me more nauseated than the proposed chemo? are the front office staff members courteous? does the waiting area suggest chaos or tranquility? what is the average time spent waiting to see the doctor? how responsive is the nursing staff to your phone calls, questions, or concerns? what system is in place in the event that my doc is unavailable? Remember that they work for you, not the other way around, and if you’re not getting the care you feel you deserve, you have every right to speak up.

6. Avail yourself of another set of ears. As much as I hated being dependent on others (see number 8 below), it was crucial to take someone with me to my doctors’ appointments. In the beginning, especially, there’s a ton of information being bandied about, and most of it is very emotionally-charged, technical, or hard to process (or maybe all 3); having someone else there to listen and take notes was a must for me. Even now, 2 1/2 years later, I still take my trusted sherpa with me to my checkups and often have to text her after the visit to confirm what the doc said about a particular issue. My brain gets very full very fast with all the cancer business, so I need my sherpa to lend me some of her brainpower, and my memory took a beating from the stress & strain of all the cancer fallout. Having someone else along to recall all the little details makes a big difference.

7. Talk openly with your kids, if you have them. They’re more observant–and resilient–than you think, and conversations about cancer will dominate your life at first, so trying to hide it from them is a bad idea. Explain it to them according to their age and ability to understand. My kids were 8 and 10 when I was diagnosed, and I told them that my doctor found a cancer in my breast that needed to be removed with surgery, but that once the surgery was over, the cancer would be gone and I would be around for a long, long time to harass and embarrass them. I said that I would need to lay down and rest a lot, but that it was temporary and once I healed, I would be ok. My 8-year-old accepted that as fact, while my 10-year-old asked repeatedly if I was sure I wasn’t going to die. He needed more reassurance, so I took him to my breast surgeon, who explained the same thing I’d explained, but hearing it from her, in a more clinical setting, reassured him.

8. Let people help. Man oh man this one was so hard for me. I don’t like depending on others, and I don’t like accepting help. However, I learned real fast that I needed to let go and get comfortable with delegating and giving orders. It was hard, hard, hard for me. But I realized that many people wanted to help, and that because they felt powerless in many ways, allowing them to bring a meal or pick up my kids allowed them to participate and made them feel good for helping. For those who are the ones wanting to help, a little piece of advice: don’t ask what you can do to help, and don’t say, “Let me know if you need anything.” I was so bamboozled by all things cancer that I didn’t know what I needed some days. Volunteer something specific, i.e., I’ll come walk your dog, or I’ll drive you to your doctor’s appointment, or I’m coming over to vacuum your house and fold your laundry.

9. Nix the pity party. Another great piece of advice from my amazing breast surgeon. She allowed that there would be days in which I didn’t want to get out of bed, but she put a time-limit on it. She gave me 3 days of wallowing, and said if I felt like I needed more, to come see her and we’d talk. It’s tempting to wonder, and even ask, Why me? But the answer inevitably will be Who knows? so ya might as well get up and get on with it.

10. Limit your exposure to anyone in your life who is negative or not supportive. Trust me, people will come out of the woodwork when they hear through the grapevine that you “won” the cancer lottery. You will likely hear all manner of advice and anecdotes, most of which are neither helpful nor amusing. Also trust me that you do not need to hear about how your next-door neighbor’s brother’s boss’s wife had the same kind of cancer you’ve been diagnosed with, and she was sick as a dog and bald as an old man all through chemo and then died a year later. I repeat: you do not need to hear this kind of talk. Distance yourself from anyone who brings that kind of junk into your yard. I had to tell a few people flat-out that their diarrhea of the mouth was not helping me and that if they couldn’t think of something constructive to say or something banal upon which to comment, they could just keep on walking. You will learn who your real friends are, you will likely make some new friends, and you may even find yourself outgrowing some friendships along the way. All of this is ok. Don’t be surprised if you have friends who can’t be bothered to listen to you vent or who are afraid that your bad luck will bleed over onto them. Don’t be surprised if you have a friend who backs out of a commitment to help you in your cancer “journey.” The sad truth is some people are fair-weather friends, and cancer can be a blustery wind that uproots the seeds of friendship. The good news is that cancer can also bring people into your life just when you need them most. Two of my dearest friends are those I was merely acquainted with pre-cancer, but whose kind hearts and fine character led them to me in my time of need, and by my side they have remained.

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It’s not a gift, people

I ran into a woman at the gym who I hadn’t seen in a while. She didn’t know about my little bout with breast cancer, and when she asked what I’ve been up to, I told her. I told her the truth, that it was a simple cancer that was caught early and is highly treatable. The cancer was pretty simple, but the post-mastectomy infection was very complicated. I’m still dealing with the mess from that damned infection.

She asked a lot of questions, trotting out the usual suspects. I don’t mind the questions, and I don’t begrudge her curiosity. Here’s how the conversation went down: How did you know you had cancer? I didn’t. At my annual well-woman exam my OB-GYN found a lump that I never felt, even when she put my hand right on it. Why didn’t you do a lumpectomy instead of a mastectomy? Because I wanted to slash & burn each and every cancer cell in the area. Do you regret having chosen such a drastic surgery? Nope, not one bit. Turns out there was cancer in the other breast, that didn’t show up in any of the pre-surgery testing. Do you have a family history of breast cancer? Not so muchMy cousin Cheryl had it nearly 20 years ago, but my mom and her sister both died of different cancers. How old was your mom when she died? 67. Way too young, and not a day goes by that my heart doesn’t ache — some days physically but mostly it’s mental — from missing her, and while the grief certainly isn’t as raw after nearly 6 years, I don’t think I’ll ever stop missing her. How did you hide it from your kids? I didn’t try to but instead explained everything and reassured them that my cancer wasn’t going to kill me like YaYa’s killed her. 

It was a perfectly normal conversation — well, perfectly normal now that I’m among the 1 in 8 women who will contract this damned disease — and then she said it: the one thing that sets my teeth on edge, that makes me feel like steam is coming out of my ears, that makes me have to work really, really hard not to punch someone in the brain.

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She said, “It sounds like it’s been hard, but it’s so good to see you working hard in the gym. What a gift you’ve been given. Aren’t you so lucky to be so young and strong, and to have come out of this so well?”

I was speechless. I probably looked like a fish on a hook, mouth opening and closing, wondering what the hell just happened.

Of course I realize she was trying to say the right thing, and in all likelihood was even trying to compliment me with the “OMG, you look so healthy for someone who’s battled cancer” business. I know it’s a sticky situation, people, and that it’s hard to find the right thing to say. But really, is it that difficult?

I’m the absolute last person to look at a cancer diagnosis as a gift. It’s not. It’s a diagnosis of a terrible, terrifying disease. If you think cancer is a gift, kindly remove me from your list of people for whom you shop. I’m out. Yes, good things can come from a bad situation: new friendships blossom, existing relationships are strengthened, the depths of one’s character are carefully examined, yadda yadda. But at the end of the day, if someone tells me I’m better off for having had cancer, I call bullshit.

I recently read an interview with Melissa Etheridge about her breast cancer. She joined the pink ribbon club in October 2004, and has been quite outspoken about her “cancer journey.” I like Melissa Etheridge. I like her blatant feminism and her moxie. She displayed some rockin courage when she performed, bald, at the Grammys shortly after being diagnosed.

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Things like her bald performance are very good for cancer patients, no doubt. Her decision to not wear a wig forces people to see the harsher sides of cancer, and I applaud her courage in putting herself out there, even if seeing her bald head makes some people uncomfortable. Especially if seeing her bald head makes some people uncomfortable.

But she also talks about cancer about something for which she’s grateful. I guess that takes courage, too, but I have a problem with it. She says that when someone tells her they’ve been diagnosed with cancer, her reply is “Wow, great! Your body is telling you that you can’t go on like this and you have to change. You’ll look back on your disease and say ‘I’m glad that happened to me.’ ”

Well, guess what? There was precious little in my life that needed to change pre-cancer. I exercised 6 days a week, ate heathfully, drank lots of water, avoided toxins, and worked hard to have a balanced and healthy life. Cancer got me anyway. I certainly won’t look back on this — assuming it ever ends — and say I’m glad it happened to me. Uh uh. No sir. No way. I can’t imagine looking back on this and saying I’m glad it happened. That its was a gift. Not in a million years.

Listen, Melissa: someone who’s newly diagnosed — and most likely terrified, freaked out, and shocked — does not need to hear someone essentially say, “Oops, I guess you’ve been doing it all wrong and this is your fault.” I don’t care if you are a celebrity and a Grammy winner. Zip it. No one needs to hear that. And no one needs to hear that cancer is a gift, either.

Sheesh. I’m not even going to get into the whole mess of it’s easy for her to say that, she’s a star and has plenty of money/time/resources/help/clout. That’s a post for another day (even though it’s true). Let’s stick to the idea of how wrong it is to imply that the person with cancer is somehow at fault, that he/she did something or didn’t do something that caused their cells to go wonky and create a shitstorm in their body. Wrong, wrong, wrong.

I will never forget my sweet  breast surgeon Dr Dempsey looking me in the eye while holding both my  hands and saying, “This is not your fault. You did not cause this cancer.” Here’s that part of the notes that Boss Lady took for me that day (doesn’t she have nice handwriting?). I’m not a touchy-feely person at all, but Dr Dempsey is, and she did me a huge favor that day by looking me in the eye and telling me that this is not my fault. I’m all for accepting responsibility, but not here, not when it comes to cancer. It’s not my fault, I’m not glad it happened to me, and it’s not a gift.