As promised, today my friend Laura Zigman has generously agreed to do a guest blog about her experience with breast cancer. We have been discussing this issue on the blog recently and I’m so honored that Laura is willing to share her experience, wisdom, strength and good-humored, no-nonsense advice with us. After reading her blog, you’ll no doubt want to check out her books, so click on her name above, and you will find them on her website. So, without further ado ……here’s Laura:
Photo by Greg Martin
Hi Everyone,
I’m so excited to be guest blogging today on Ann Leary’s blog. Ann and I met recently after hearing about each other for several years through mutual friends and we haven’t stop talking since. I love her blog, love her books, love her hilarious goofy humor and her enormous sense of compassion and sensitivity to others — and clearly I’m not alone. Every time she posts something new on her blog she gets a zillion comments from her loyal readers and I know she reads each and every one of them, because a week or so ago she told me that a few of her readers had recently been diagnosed with breast cancer. That’s when she asked me to guest blog about my experience with it. She knows a bunch of women who could have shared their breast cancer story — we all do, unfortunately, right? — so I was truly flattered that she asked me. But mostly I was amazed by her lovely and thoughtful idea. This – building a sense of community – is blogging at its best.
And so here we are. I’ve been thinking for days what I would write about; what I would focus on; what, as people say these days, my “message” would be. Whether it should be funny or serious, whether it would focus on medical issues or emotional issues. And I realized that the topic I want to focus on — how not to feel like you’re failing at cancer – is the most important message I can share. If I can keep one women from feeling like she’s doing something – if not everything – wrong when she has breast cancer, then I’ll feel like I earned my spot on Ann’s blog.
First, let me start by giving you the broad-strokes of my story:
Almost four years ago, at 44, I was diagnosed with DCIS in my left breast. It was caught after I had a routine breast MRI (at my request: my mother had a double mastectomy when she was 42). Because there were several spots of DCIS throughout the breast a lumpectomy wasn’t an option: a mastectomy was necessary. That was the bad news: the good news was that because it was caught so early – Stage 0 – I wouldn’t need chemo or radiation after surgery. I was also advised to consider having my second breast removed since women who have breast cancer in one breast are much more likely to develop it in the second breast. I was also briefed on the various kinds of reconstruction options: implants, or the “tummy tuck kind” (ßa farce! Keep reading and I’ll explain). Two months after my diagnosis, I had the surgery – a double mastectomy with simultaneous tram-flap reconstruction. I was in surgery for 12 hours, in bed for 4 months, and couldn’t get out of a chair without being pulled out of it by my husband for almost a year.
Feeling like I was “failing” at breast cancer – and to clarify, the feeling wasn’t coming from inside me, it was coming from outside me — started almost immediately and continued on throughout my entire experience. And whenever I experience something I always assume that I can’t possibly be so weird or so special that I’m the only one experiencing it. No matter what I did or said or chose, someone always had an opinion about what I was doing: or, to be more exact, that what I was doing was wrong – and I suspect most women feel that way, too. So what I decided to do is provide you with a map of The Breast Cancer Minefield. I hope you don’t end up needing it but if you do, unfold it and hopefully it will help you avoid these “You’re wrong!” pitfalls:
* Don’t feel like a complete hypochondriac if you are paranoid about getting breast cancer.
This falls under the No matter what you do is wrong! category. If you’re one of those women who is vigilant about getting mammograms and wants any available test for detection (like I was), do not change. This hyper-vigilance is a great thing. Ignore people who make fun of you for being such a breast-cancer nerd. Stand firm with your doctors when they try to talk you out of extra tests because you just had a clean mammogram or don’t have a family history of breast cancer. For one thing, mammograms are only 69% effective at detecting breast cancer, and for another, women who have no family history of breast cancer are only slightly less at risk than women who do have a family history of it.
* Don’t feel like a total loser if you haven’t been a complete paranoid hypochondriac about getting breast cancer.
A few years ago, one of the most famous advice givers in the world and a good friend of mine – Amy Dickinson, who writes the nationally-syndicated Ask Amy column for the Chicago Tribune – admitted to me that she was finally, in her late 40s, having her first mammogram. Besides sweating out the test results (she was fine), she was full of shame and embarrassment and humiliation because she’d waited so long to do something she knew she should have done years ago. I remember her emailing me from the waiting room and confessing her failure to take the most basic screening test for what runs in her family as if it were a sin and a crime. So. If you’re one of those women like Amy who hasn’t yet had a mammogram, do not don a hairshirt and self-flagellate. For whatever reasons you had for putting it off – fear, fear, or fear – you are human and you must forgive yourself. You must also, however, go get that mammogram now!
* Don’t feel like a complete idiot if you don’t (fully) understand your diagnosis.
One of the most ridiculous and almost comical parts of my story was that for the first week after getting the results of my needle biopsy and for almost an hour into my consultation with my surgeon (and head of the Sagoff Breast Centre in Boston where I live), I didn’t realize I actually had cancer. I’ll pause now so you can laugh, but I swear, when the radiologist first called to tell me that that I had DCIS – Ductal Carcinoma in Situ – she said, “Don’t let the word ‘cancer’ scare you – it’s not cancer. It’s pre-cancer.” I know she said that because I wrote it down, but as it turned out DCIS is cancer (duh) even though in my case it was caught so early it was deemed Stage 0 (I’d never heard of Stage 0 cancer.) Worse than telling family and friends that I had breast cancer was the embarrassment of having to explain why I’d told them I didn’t have cancer the first time around. My excuse? I was nervous and cancer is confusing.
* Don’t feel like a complete moron if you don’t know everything there is to know about breast cancer within a week of getting your diagnosis
One of the first things you’re told after you’re told you have cancer is to learn everything you possibly can about your disease. The non-technical term for this bossy order is to “self-educate” because apparently you’re expected to “know more than your surgeon” about treatment options without going to medical school for 20 years. As with any piece of advice, the nugget here is a good one: you should find out as much as you can as quickly as you can so you can understand what the hell your doctor is telling you (unlike me who got all confused) and so you can find out the best surgeons and hospitals for your particular kind of cancer. However, you’re only human. You’re not going to be able to Google your way to a career as a surgical oncologist. Failing to be as smart as your doctor – who is a doctor because they went to medical school – is not a failure. You’re just a (smart) person (with access to a computer) who got cancer. Act accordingly.
* Don’t feel bad about yourself if you choose to have a single mastectomy or a double mastectomy.
This one sounds weird, I’m sure – maybe it’s the word “choose” – but a lot of what happens when you have cancer is making choices about how you’re going to treat your cancer. There’s lots of conflicting research out there, but there’s one thing that’s a complete certainty: No matter what you choose, someone will think you’re wrong and crazy for choosing it. For instance, there was a spate of articles last year in the New York Times and other publications about how women were being “overly aggressive” in their surgical options for breast cancer. Mostly they were talking about women who choose to have a double mastectomy when cancer is only found in one breast and how that was verging on the ridiculous because women were clearly “confused” about prophylactic mastectomies reducing recurrences of breast cancer. The thing is: the research shows that if you have cancer in one breast you are more likely to develop it in the second breast (which has nothing to do with recurrence). Which means that choosing to have a double mastectomy is a valid option to pick. I’m not saying it’s the right option to pick – I happened to pick it for myself and as it turned out, cancer was found in my “healthy” breast in the final surgical pathology report that came back two weeks after my surgery – but either option is valid. Whether you choose to have a single mastectomy or a double is your choice. You’re not over-reacting if you have a double, and you’re not under-reacting if you don’t.
* Don’t feel bad about yourself if you’re not one of those people who think their breast cancer is “a gift.”
Please. Don’t get me started on this gigantic topic. This is the motherlode of cancer failure out there and it’s heaped on anyone who doesn’t have a 100% positive attitude 100% of the time. Barbara Ehrenreich, a brilliant writer whose most recent book is “Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America,” has a chapter in the book devoted to the notion of “enforced cheerfulness” when it comes to cancer. For some reason, lots and lots and lots of people will try to get you to believe that cancer is a “fight” and a “battle” you can “win” if only you have a positive attitude. Try telling that to the families of all our loved ones who died from their cancer – try telling them that their daughter or mother or sister or aunt died because…she wasn’t positive enough. Again, while there’s a great nugget here – be hopeful and optimistic in the face of adversity – everything around that nugget is a set up for an epic fail: unfortunately, we can’t control everything. And one of the things we can’t control is whether or not we will live or die from cancer. Walk for The Cure if you want to, Wear Pink and Buy Pink if you want to, think of your cancer as A Gift if you want to. But people should be allowed to have their own feelings about their own cancer. It’s normal to be sad or angry or tired or exhausted or negative or pessimistic when you have cancer. Don’t let people tell you how to feel when you have cancer. And don’t think there’s something wrong with you if you have days when you feel down. There isn’t. Feel your feelings. They’ll pass.
* Don’t feel bad if you don’t want to become part of the official “cancer community.”
People grieve in their own way, and people handle cancer in their own way. While sharing feelings and thoughts – like right here on Ann’s blog – is a fantastic way to share information and feel comforted by other people in similar circumstances – you don’t have to do it if you don’t want to. People kept telling me to join a support group but I didn’t want to because in my case, I didn’t really feel like I fit into a support group: most breast cancer groups were filled with women who were going through chemo and radiation and were dealing with all the side effects of those treatments. I wasn’t. Luckily. Group-sharing isn’t for everyone. Sharing just with close friends – or strangers on great breast-cancer websites like the one I used to write for, www.mybreastcancernetwork.com — is okay, too.
* Don’t (implicitly) trust female doctors just because they’re female.
OK, listen, If you pay attention to one thing in my long blog entry please pay attention to this one: just because your doctor is a woman doesn’t mean she’s giving you the best advice or that everything she says is true. I don’t know how to communicate how important this is because this is how so many women think. It’s how I thought! So when my female internist tried to talk me out of having a breast MRI (even though I had a family history of breast cancer) and when she tried to talk me out of having the BRCA test for the breast cancer genes (even though I had a family history of breast cancer and the test is free to Jews like me [because Jewish women have a higher rate of breast cancer] and to many non-Jews with a strong family history), I almost agreed. Because she was a woman and of course a woman would be on my side and have my best interests at heart! NOT. And when my fantastic and brilliant breast surgeon and plastic surgeon – both women – told me that the recovery time for the gigantically huge reconstruction surgery I was going to have was 4-6 weeks, I almost believed them. Because they were women and of course women would be completely straight with me! NOT. Question all doctors all the time – male or female. They may not intend to be manipulative or misleading, but they often are. I refused to take no for an answer on the MRI, but I believed the revised 6-8 week recovery time I was told when I questioned the original estimate.
* Don’t feel bad if you don’t want reconstruction.
These days, it’s almost a given that every woman who has a mastectomy or double mastectomy is going to have reconstructive surgery – either with implants or through the use of their own fat and muscle. And yes, this is terrific: modern medicine at its best. Plastic surgeons can do amazing things these days and often times the results of breast reconstruction are really pretty great. But I’ve often wondered since The Year I Spent in Bed After My Reconstruction Surgery whether or not I’d do it again. And I can honestly say this: I don’t know. I do know this, though: I would think about it a lot more than I did. At the time I spent all my energy deciding on what type of reconstructive surgery I was going to have — implants or the “tummy-tuck” version (which is far from the fabulous make-over procedure they lead you to believe it is). I spent zero time deciding on whether or not I was going to even have reconstruction. It’s a huge decision – in some cases, the reconstruction surgery is harder to heal from then the actual cancer surgery – so give it a lot of thought. Even though the results can be great, you don’t have to have reconstruction if you don’t want to.
* Don’t feel like getting breast cancer is a death sentence.
Because it’s not. You don’t have to run out and buy a Pink Panther suit and be bullied into cancer-cheerfulness, but you don’t have to think a breast cancer diagnosis is the end of your life, either. For most women, it’s just a phase, a stopover, a place on the map we find ourselves and hadn’t planned on visiting. For most women, it’s a place we’re just passing through.
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