The Other “F” Word

I went to see my oncologist for my six-month checkup yesterday. All was routine, other than my blood pressure being 131 over something when it’s usually in the 115 range, even when I see my family doctor. No anxiety there.

When he asked what had changed in the last six months, I told him about the endoscopy I had in December, which turned out to be normal. But what prompted it is something anyone whose had cancer faces whether you want to admit it or not (and I usually don’t)–fear. I was having stomach discomfort that went beyond what over the counter drugs could handle. I finally got worried enough to get in touch with my family doctor. Her practice has a secure portal, so I was able to email her and spew out all my fears.

Ten years ago I wouldn’t have shared my fears at all, so that’s a kind of progress. But 10 years ago, I didn’t appreciate how your body can turn on you. Thanks to early-stage breast cancer I do, and it’s hard for my mind not to immediately go to the worst-case scenario. I shared every cancer scenario that kept me awake at 2 a.m. and scheduled an appointment. 

When I came in for the appointment, she was wonderful. I did a brief recap of why I was there. She listened, then said, “Let’s put all that stuff you’re worried about over here,” waving her hand, “and focus on the symptoms.” Based on my situation and history she prescribed a stomach acid drug and endoscopy. I want to stress that she didn’t order the test because I was scared, and I wouldn’t want her to. She ordered it because it was medically indicated. I’m not a big hugger but I asked for a hug after that because her rational but respectful approach was just what I needed. I feel blessed to have her as my doctor.  

I feel blessed to have my oncologist too. When I told him about sharing a wheelbarrow full of fears with my family doctor, he nodded and said, “That’s what happens when you have cancer.” Then he paused and smiled and said, “It doesn’t help to be a cancer doctor either.” I said no kidding.

It reminded me of the “No Fear’ brand of clothing that came into vogue because of motocross. A few years back I spotted a young guy wearing a shirt that said, “Some Fear.” I laughed then, but it’s even funnier now.

The #BCSM (breast cancer social media) community has discussed this residual fear on their great Monday night tweetchat. If you feel like you could use (or lend) some support and you’re comfortable with Twitter, it’s a great chat. You can also visit their website. And they’re not snobs; some things, like fear, are universal, and people with other kinds of cancer have been made welcome there.

Tangled Up In Pink

(Editor’s note: This is a repost of something I originally wrote two years ago. Some things have changed since then; Lionhearted advocate Rachel Cheetham Moro, who was still using the pseudonym Rachel May in the blog linked here, died of breast cancer. Jody Schoger, a wonderful writer and thinker, and founder of the #BCSM tweetchat, learned her breast cancer has metastasized. But some things have not changed; October is no less pink, and we still have not found a cure.)  

I’ve always loved fall, particularly October, even though in recent years it’s become tinged with sadness. My mom died on October 1, 2003, and my dad’s birthday was October 13; this year, he would have been 80. But those bittersweet feelings seem in perfect keeping with fall. The glory of the brilliant gold and red leaves lies in knowing they can’t last. 

But now, thanks to the pink retail holiday that breast cancer has become, at least in the United States, the black cat and orange pumpkin of Halloween, the crisp blue sky and gold leaves of a perfect fall day, have all been crowded out by pink.

The crowding isn’t just visual. When you blog about breast cancer, October is a land mine just waiting to be stepped on. Do you jump on the pink bandwagon and blog about breast cancer awareness and support, as if it’s the one time of year you can talk about it? Or you resist, lamenting the avalanche of pink products and specials and events that have hijacked the month?

I knew this had become an issue when another blogger asked me if I had any big plans for October blog posts. The fact we were even having a discussion about this made me realize just how much Pinktober has gotten under our collective skin. LIke the pink ribbon itself, it’s a loaded symbol.

The truth is, I don’t have that much to say about Pinktober other than I’m already tired of it and don’t like feeling (self-induced) pressure to write about it. Instead, I’m going to give you a recommended reading list of the best things I’ve read so far.

I mentioned that the pink onslaught seems to be most intense in the United States. Read this wonderful post, “Where There Is No Pink Pandemic,” by Philippa Ramsden at Feisty Blue Gecko, to see how differently breast cancer is viewed in the rest of the world.

One of the best posts I’ve read about what a loaded symbol the pink ribbon has become comes from Jody Schoger at the wonderful Women with Cancer. In her most recent post, Upending Pink, she explains why October has made her uneasy for a long time, and includes some great links to recent news coverage of all things pink. But what touched me even more was her previous post, Left Behind, in which she talked about how the politics of the pink ribbon intruded on something as private as a funeral. (I’ve had similar mixed feelings when accosted by a basket of pink ribbons at a funeral, as I’m sure many of us have.)

One of the best and most consistent critics of pink ribbon culture is Gayle Sulik, who wrote the book Pink Ribbon Blues. She will be blogging 30 Days of Breast Cancer Awareness and her first installment, the Inspirational vs. the Actual, looks great.

Rachel May at the Cancer Culture Chronicles sums up what’s wrong with the typical approach to awareness in Breast Cancer Awareness Jersey Shore Style! All outcomes are good, buying a pink pashmina passes for awareness, and there is nothing remotely related to her experience with metastatic cancer. Apparently, her particular “brand” of cancer is a tough sell. It’s a bit problematic figuring out which shade of lipstick works best with thrush.  

Debbie Woodbury at Where We Go Now used to like pink, and wants us to reclaim its power this October.

You’ll find plenty of thought-provoking reads in these and many other excellent blogs. And here’s wishing all of us a fast month.

Should We Rename DCIS?

Ductal carcinoma in situ was all over the news this week, after the Journal of the American Medical Association published “Overdiagnosis and Overtreatment in Cancer, An Opportunity for Improvement.” This is a good, and necessary, conversation. DCIS was front and center as one of the prime candidates for overtreatment, and the panel proposed renaming it Indolent Lesions of Epithelial Origin (or its evocative acronym, IDLE), to lessen fear and potential overtreatment.

I can speak with some authority on the subject, as I was diagnosed and treated for DCIS five years ago. After considerable discussion and two attempts at breast-conserving surgery that failed to get the desired clean margins, the treatment plan my doctors and I landed on was a (single) mastectomy with auxiliary lymph node removal to make sure some cells hadn’t escaped. Luckily, they had not, although the mastectomy uncovered still more cells lurking beyond what the earlier surgeries captured.

I won’t repeat what others have said, but here’s my take on it. You can call it whatever you want. Call it DCIS or precancer. Call it indolent or IDLE. Call it a cab, for all I care. But if I were diagnosed today, with the same circumstances, I’m willing to bet my doctors would make the same recommendation and I would make the same choice. My oncologist told me the odds of my DCIS becoming invasive were 50/50, and I didn’t like those odds. He also told me he would support me if I chose radiation instead. “Wait and see” was not an option then, and I don’t think it would be now given my specific situation.

The other point I want to make is related to that. My book, From Zero to Mastectomy, was reviewed last week on the Breast Cancer Consortium website. While I appreciate the thoughtful treatment Bonnie Spanier gave it and her overall positive review, I want to respond to one area. She said my trajectory took me farther away from the full spectrum of the disease as a precancer, and while she conceded that was understandable at the time, she didn’t feel I gave enough attention to the complexities of DCIS.

The book was not an academic exercise for me. I did not set out to write The Emperor of All Precancers. I felt, then and now, that the best way I could help other women was by sharing my experience.

Here are some links to recent and not-so-recent stories about DCIS.

If you read only one thing regarding the current debate, read “What’s In A Name?” posted on the #BCSM Community website. This piece, by Jody Schoger and Drs. Deanna Attai and Michael Cowher, is the best summary of the issue I’ve read.

Bloomberg News ran a well-balanced story on handling this confusing diagnosis, and I was one of the women interviewed.

CURE Today magazine ran the piece “Redefining the Word Cancer,” in which Debu Tripathy wisely said, “one cannot just declare a new system into existence.”  (Especially a belief system: See: Mammograms, Annual.)

The same point was raised in the New York Times “Well” blog, in its excellent “Scientists Seek to Rein in Diagnoses of Cancer.” My favorite part of this piece was when Memorial Sloan-Kettering’s Dr. Larry Norton said changing the terminology does not solve the problem of doctors not being able to tell patients which cancers will remain indolent and which will go on to kill them.

The best path we have remains the one we’ve always had: individual consultations between doctor and patient, based on individual physical characteristics and risk factors. I would also add levels of risk tolerance. I discussed it a bit in my Bloomberg News interview, and I’ve also written about women who opt for bilateral mastectomies after being diagnosed with DCIS. As the discussion about this poorly understood condition heats up again and the public opinion pendulum swings in favor of watching and waiting, let’s not stand in judgment of their choice.

Guilt 101

This image is from gr0wing.comThis is not a post about breast cancer survivor guilt. It’s about good old-fashioned, run-of-the-mill guilt.  I seem to be exceptionally good at it and if you are too, maybe I can serve as a teachable moment.

I had a bit of a health scare last month. I got called back for a mammogram and ultrasound because the radiologist thought she saw something on my regular mammogram. She didn’t, although I have to go back in six months as a precaution.

This is where the guilt comes in. I was trying to brace myself for what would happen if I had to start the cancer treatment cycle all over again (I opted for a single mastectomy for DCIS five years ago). One of the first things that popped into my head was, “Well, if I’m going through treatment again I certainly won’t have time for school.” That’s when I finally bought a clue and realized that I didn’t want to go back to school. Once again, the specter of cancer became a kind of tipping point.

I should pause to explain. Last year I decided I wanted to get serious about getting better at writing poetry, and was accepted into the MFA program at the University of Nebraska. It’s a low-residency program, meaning you attend residency, an intense “boot camp” of lectures and workshops, for 10 days and then study independently with a mentor for the rest of the semester. I loved residency last summer but cramming a 12-hour course load on top of a fairly demanding full-time job last fall was grueling. I decided to skip the spring semester but had every intention of going back next month for this year’s fall semester.

Yet I kept ignoring clues like the stressful dreams I was starting to have again, and other ways my tamped-down feelings started bubbling up. I went to a poetry reading in January, hosted by one of our program mentors. He said he hoped he’d see me in July and I said I would be there. After the reading as the hosts said goodbye at the door, I practically snapped at him, saying again, “I will be there in July!” A little defensive, are we? Who was I trying to convince?

It reminded me of when I was first diagnosed and trying to figure out my treatment options. I was planning a trip back to North Dakota to attend my  dad’s graveside service in May. (I had  attended his funeral in February, and as you might imagine, North Dakota is not big on graveside services at that time of year.) I kept thinking I would just work my trip back home into my suddenly filled appointment book. I was wrong. One oncologist had just recommended a mastectomy, which seemed pretty drastic, and I was trying to get into see a second oncologist. My emotions were churning so much that putting this consult on hold wasn’t the best idea. But because I felt like I had no choice, I kept saying “I’m fine, I’m fine, we have to go.” I was following the iron law of self-induced obligation and guilt.

The tipping point finally came when my husband Bruce and I were having lunch at a restaurant and I burst into tears, seemingly out of nowhere. He just looked at me and said, “You’re not ready for prime time.” And I wasn’t. I cancelled the trip. My brother and the rest of my family understood.

Now it’s deja vu all over again. I went from zero to obligation in 60 seconds, as if once I signed up for my MFA I was on deadline. I finally bought a clue and realized I have a choice. I choose to complete my MFA after I retire, instead of trying to do it in “my spare time” and turning something that is a source of great joy into a source of guilt and stress.

I felt guilty when I wasn’t putting enough time into my work, and I felt equally guilty when I decided to postpone getting my MFA. I dithered before telling my mentor, the program director and the friends I made last summer. But like my family five years ago, they supported and respected my decision.

So this basically proves I have all the self-awareness of a turnip and have learned nothing in five years. Well, I guess I have learned to read the clues a little better. The moral of this story, if there is one, is that if you’re like me and have an overdeveloped sense of guilt, stop for a minute when those guilt feelings start piling up. Read the clues in your own behavior like you would for anyone else. You might find there’s something you’re not admitting to yourself. Admit it, and trust your gut.

Angie’s Choice

I know, I know, we don’t need yet another blog post about Angelina Jolie’s decision to undergo a prophylactic bilateral mastectomy. She doesn’t need any more attention.

But that’s exactly what drew me to write this–she doesn’t need any more attention. She didn’t have to write that graceful and lovely piece for the New York Times. She could have gone on being one of the world’s most famous women without sharing her secret. But she chose to tell us about her medical choice, in the hope it would help other women.

As usual, people who know absolutely nothing about what it’s like to lose a loved one too young to cancer, who know absolutely nothing about being told you have a genetic time bomb ready to go off–87 percent chance, anyone?–decided to judge her choice.

I have a message for people of the judgmental persuasion. Until you know what it’s like to hear the words “You have cancer,” or to lose your mother or sister or daughter to it, you don’t get a vote. (Even then, you don’t get a vote; but you’re far less likely to want one.) Check the beam in your own eye, if you tend toward the Biblical. If you don’t, let me put it in language you’ll understand. Shut. The. Fuck. Up.

I said it in my 10 Commandments of Breast Cancer and I’ll say it again: Thou shalt not judge someone else’s treatment or reconstruction choices.

My own choice: I had no family history when I was diagnosed five years ago so I opted not to get genetic testing. I also opted for a single mastectomy for DCIS. I know of many young women who opted for the bilateral in that situation. They did what was right for their specific situation and risk tolerance; I did what was right for mine.

One thing I wish I’d seen covered more: Ms. Jolie mentioned how expensive the BRCA test is, more than $3,000; so did a couple of TV stories I caught, but didn’t mention why.

The reason it’s so expensive is because Myriad Genetics owns the patent to the gene, effectively preventing researchers from coming up with other, possibly less expensive alternatives. The case is before the U.S. Supreme Court right now, and I’ve read that the Supreme Court is skeptical of Myriad’s argument. I hope their skepticism translates to a ruling against Myriad.

What Do Chasing An MFA & Breast Cancer Have in Common?

If you’ve read my blog for awhile, you know I’ve compared breast cancer to everything from golf to riding a motorcycle. Pursuing a master’s degree in fine arts might seem like a bigger stretch than any of them, but as I enter the third week of my first semester, I’ve found more similarities than I expected.

1. Both can make you feel overwhelmed. When I was first diagnosed, my mind was spinning like a hamster on a wheel and I couldn’t sleep. While trying to figure out a treatment plan, I’d wake up in a panic wondering what to do. While trying to figure out a study plan during residency, I’d wake up in a panic wondering what I had done.

2. Both require stillness to achieve your goals. You have got to find that place of stillness to make the right treatment decision. I could tell I had made the right decision when the churning in my head stopped. You have also got to find that stillness in order to create a poem, a short story, a novel. You may need to take a break from all your frenetic activity, online as well as offline.

3. Both keep your brain humming along. The hamster wheel sensation is not pleasant; it’s a mind spinning with absolutely nowhere to go. As the date of my mastectomy approached, the churn in my head was replaced by a constant low-level humming, like a low-level caffeine buzz. Now my head is humming with poetry. It’s a mix of things I’ve read kicking in and ideas for poems and essays and yes, deadlines. But it’s my brain trying to find the patterns in what I’m learning, a far cry from anticipating very personal and very scary surgery.

4. Both are lonely endeavors. The loneliest I’ve ever been in my life was when I was coming to my treatment decision. Your doctors can’t make that decision for you. Neither can your family or friends. Staring at a blank screen or sheet of paper can also be a lonely feeling. Writing is a solitary activity.

5. Both have awesome communities. As I was putting in 12-hour days attending workshops and lectures and having conversations you’d have to be a poetry geek to get excited about, it occurred to me that I had found my tribe–again. I had many moments when my writing tribe reminded me of the sherpa tribe I’ve found in the breast cancer community.

The big difference is that MFA candidates are self-selected. We all want to be there. No one  volunteers to join the breast cancer community. But once you’re in it, you realize how wonderful it is and how much we help each other through.

Residency

I’m starting my first day of residency for an MFA in poetry writing through the University of Nebraska-Omaha, and it’s all breast cancer’s fault.   

I guess I should explain. I started pursuing my undergraduate degree in journalism 31 years ago and eventually got a degree from the University of Nebraska-Lincoln. During that time, I took a couple of poetry writing classes for fun. I had loved reading and writing poetry since I was a little kid. In college, I got a handful of things published and enjoyed it. One of my instructors said I should be pushing myself and going to graduate school.

But I went from coasting to drifting away from poetry completely. I never wrote it and barely read it. But when I was diagnosed with DCIS in 2008, poetry started speaking to me again. First I started reading it again, then I stared writing it. Now, as before, I’ve gotten a handful of things published or accepted for publication over the coming months. The difference now is I do want to push myself. I want to get better at my craft.

I can’t say I might not have arrived at this point without breast cancer, but I honestly doubt it. No matter how early stage it is when it shows up, cancer is a wake-up call. It makes you wonder what it is you plan to do with this life you’re so lucky to have.

Some of us in the breast cancer blogging community seem to have arrived at a crossroads. Katie is tired of fighting and of losing friends, and wondering just how much you can say about breast cancer. Marie is taking a medical break. I’m going to have to devote time to poetry, likely at the expense of my breast cancer social media activity and blogging (unless I can figure out how to give up sleeping).

It might feel like you’re giving up if you don’t continue to fight for the friends you’ve lost, and we’ve all lost too many. But I also feel very strongly that if we don’t live the life that matters to us, we’re doing them an even bigger disservice. We owe it to them to make every minute count.

I don’t plan to walk away from breast cancer advocacy completely. The community I’ve found online means too much to me. I may not be blogging as often and instead of focusing on breast cancer, I may want to share what I’ve learned in case anyone wants to try their hand at writing as therapy. My friend Pam was a big journaler and helped other women with cancer learn how to journal. Maybe the best thing I can do for her memory is to do the same with poetry.

Reverting to Form

I’m a fraud. Well, not in the sense of identity theft or anything like that. But for the past several months I’ve been worried that something’s wrong with me and I haven’t shared it with this wonderful online community I’ve found. Some of my online buddies have shared their fears of an upcoming oncology visit or blood test, and I’ve thought of reaching out the same way, but I can’t bring myself to do it.

I didn’t reach out to many people offline either. My wonderful surgeon asked how I was when I popped in to invite him to a wine event fundraiser three months ago. And if there’s one thing I’ve learned, it’s when a doctor asks how you’re doing, it isn’t just small talk. He or she really wants to know. But online and off, I kept my fears largely to myself.

What happened was my platelets were heading in the wrong direction in September and December, and as much as my oncologist and family doctor told me not to worry, I couldn’t completely banish it from my head. I have often said that telling us how we should feel about our diagnosis is like telling us we should be six feet tall or have brown eyes. The same thing can apply to worrying. Some of us are just wired that way, although there are things we can do to ease it.

I did my best to stay offline and not let my cyberchondriac tendencies get the best of me, but I didn’t like it one bit that my oncologist bumped me up from my regular six-month checkup to four months. I didn’t like it that I wasn’t acing my blood work, and I hated it that there was nothing I could do about it.

Somewhere in the middle of all this stewing, I realized I was handling this the same way I handled my DCIS diagnosis four years ago. I told very few people while my head was churning and I was trying to figure out what to do.

I wasn’t on social media then, but now I realize it probably wouldn’t have made a difference. As open as I like to think I am, I’m still private in a lot of ways. I still have trouble admitting when I’m scared. I’m more comfortable talking about certain things when they’re in the rear-view mirror. I say supportive things to others dealing with their particular brand of medical misery, and I mean them, but I have one hell of a time taking my own advice.

I’m not sure what point I’m even trying to make with this, other than to let you know that the way we act online isn’t so different from the way we act offline. And don’t be surprised if you also find yourself reverting to form when faced with another challenge, or as in my case, a what-if scenario.

There’s nothing wrong with me, by the way. My platelets are back to normal. I’m back to checkups every six months. I’ll have to find something else to worry about for now.

Do Patient Empowerment & Squeamishness Mix?

This post originally ran a year ago. I dusted it off because I was looking up medical terms online last night and encountered some photos that brought the old squeamishness back. -Jackie

 Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.

3 Words to Banish: Coulda, Woulda, Shoulda

2011 was full of news on the breast cancer front. One item that resonated with me was discussion of a new gene test that could pinpoint which women would be most likely to benefit from radiation for their ductal carcinoma in situ (DCIS), meaning they could also pinpoint who would benefit from a wait and see approach. By definition, DCIS is confined to the milk ducts. The question is will it mind its own business and stay there, or will it escape and start to spread?

DCIS is so new on the scene that it’s not well understood yet, and doctors would rather see their patients be safe than sorry when it comes to treatment. I went the safe route when I opted for a mastectomy over radiation (trust me, it wasn’t an easy choice, at least for me). So the obvious question is, what if I could have been spared either one? What if mine had been slower moving?

I’ll spare you the details of my decision-making process (they’re in my book, ahem) but I didn’t believe my DCIS was going to stay put, then or now. I realize there’s such a thing as cognitive dissonance (what most of us call sour grapes) but I don’t think that’s the case.

And besides, that’s not the point. Whether my belief system can handle this new information or not, we’re going to see a lot of this with breast cancer or any cancer. We also learned recently that perhaps they don’t need to remove so many lymph nodes to get a good feel for whether cancer has spread. I’m sure women with lymphedema are less than delighted by that news. Such is life. Such is medical progress. Imagine how we’d all feel if we had been operated on before they discovered anesthesia.

The point I’m trying to make is that cancer is no place for “Coulda, woulda, shoulda.” We do the best we can with the information we have at the time. Crystal balls are not retroactive.

Thinking about this also got me thinking about the “three words” concept for the start of the new year. A lot of people, including me, blogged about three words to focus on instead of making resolutions. I’d like to suggest that we also consider three words to banish from our thinking in 2012 and these three are at the top of my list. Not just for how I handled my cancer, but how I live my life.

Cancer can make you wonder what you want to do with this life you’re so lucky to have. Getting older does the same thing. 40 is called the old age of youth and 50 the youth of old age. I crossed over into the youth of old age just over six years ago. I do not intend to get to the end of my life thinking “Coulda, woulda, shoulda.” And I hope you don’t either.