About Jackie Fox

I'm a writer and breast cancer survivor living in Nebraska with my husband and author of the book "From Zero to Mastectomy: What I Learned And You Need to Know about Stage 0 Breast Cancer." My day job is media relations and I read and write poetry on the side to feed my head. I developed a passion for breast cancer issues after I got up close and personal with it.

What Survives of Us

Pam and me at my book launch party, September 2010

(Editor’s note: Watching “Being Mortal” on PBS last night inspired me to repost this June 2012 post about my friend Pam. She controlled the end of her story.)

“What will survive of us is love.” -Philip Larkin

Pam broke the news on December 9th, over dinner at our house for an early Christmas celebration. She had stopped all her cancer treatment because her oncologist, who cried breaking the news, told Pam there was nothing more they could do for her. She was calm when she told us how she could feel her body shutting down. My brother-in-law Jeff, his partner Eddie and I cried. Bruce, my husband, did not, but he got a huge lump in his throat.

And then Pam did something I will never forget. She talked about how grateful she was for the life she had and for everything she had been able to do in 40 years. She talked about what a wonderful vacation we had together in Napa in October and about how much fun we were going to have that weekend.

And we did have fun. We went to the Old Market the next day and watched the Dickens carolers. We had lunch in our favorite French bistro. We sipped chocolate martinis in our favorite bar. We toasted being there, in that moment. Our standard toast two years earlier was “Here’s to getting to.” We had started counting toasts in Napa with ridiculous numbers; toast 4,205 or 5,622. We kept that going now.

In the breast cancer Twitter community we talk about being fearless friends. I am so far from fearless. I was scared for Pam all the time, and so was Bruce. We were afraid of what might go wrong when we were traveling together or she was visiting. Jeff was driving her somewhere one day toward the end and she suddenly went “Oh! Oh!” and scared the daylights out of him, but she had seen some fast food drive through she wanted to stop at for iced tea or a shake or something. What allowed us to be there for her was her incredible strength and steadfast refusal to let that thief cancer rob her of her joy in life. If she was tough enough to handle it, so were we.

She never stopped being interested in life. She wanted to know everything about our lives. She wanted to hear about school and work and food and wine. Bruce and I spent the weekend with her in her Kansas City home in early March, a month before she died. She said if you want to come, you should probably come sooner than later.

She took us shopping and to lunches, to a speakeasy and dinner with her parents. We got pedicures and she brought champagne in her tote bag. She cooked. She drove–like a bat out of hell. She hugged me so hard when we left it was like being hugged by my cowgirl cousin, who throws hay bales. I could feel her spine. When we called to let her know we got back to Omaha, she was at her son’s baseball scrimmage, in spite of pain that had kept her on the couch. None of us will ever know what all that effort cost her. When the hospice nurse started coming to her house, she told Pam she wasn’t taking enough pain medication, but Pam had to do this her way. She put off the shrinking of her world as long as she could.

After she went to hospice, she was talking to my sister-in-law Anita about something Anita had made for dinner and said, “I want that recipe.” She knew she was never leaving the hospice; she was tough enough to make the choice to go there. You need to know this isn’t denial. This is insistence on being alive.

One of my favorite stories about Pam was from the night of my book launch two years ago. She bought a carrot cake at the restaurant where we had dinner because I mentioned I liked it. (She was like that. If you liked something, she remembered it and you ended up getting it as a gift.) We brought it home after the party and she set it on the kitchen counter. Jeff and Bruce and Eddie and I were all dithering–too late, too many calories, blah blah blah. Pam didn’t say a word. She pulled five forks out of the silverware drawer, came back to the cake and stabbed all the forks into it. We mauled that cake.

That was how Pam lived her life, and how she faced death. Straight on, no dithering, no excuses. If I can be half the woman she was when my time comes, it will be because she taught me how to live with joy and light and love, and how to face death with grace.

Here’s to you, Pam. Toast 10,373 and counting. I’ll raise my glass to you for as long as I live.

Watching Cranes by Jackie Fox (Where I Live Poetry & Photography Series)

Jackie Fox:

Yes, I’m posting on this long-dormant blog. What does this have to do with breast cancer? Absolutely nothing. I’m trying to decide whether to repost old stuff, change the nature of this blog while keeping the title, or create a different poetry-themed one. Any and all thoughts and suggestions are welcome!

Originally posted on Silver Birch Press:

bruce_fox
WATCHING CRANES
by Jackie Fox

Like heaven’s beating heart
they arrive by the thousands,
until the swirling sky glides
to a stop.

They leap for sheer joy,
curtsy on black twig legs,
heads touched by God’s
thumbprint.

NOTE FROM THE AUTHOR: I wrote this poem after my husband and I spent the night in a private blind on the Platte River watching sandhill cranes a couple hours west of Omaha, Nebraska, where we live. (It’s a real bucket list experience!) Every spring about half a million sandhill cranes spend a few weeks where the Platte River runs through south central Nebraska to rest up before heading north. The cranes spend the days in nearby cornfields eating, and they roost in the shallow river sandbars at night. They talk all night; it’s like a noisy cocktail party. When they stop talking it’s because a predator is nearby. People come from all over the world to see them, and now…

View original 98 more words

525,600 Minutes

(Napa toastEditor’s note: Today is the second anniversary of my friend Pam’s death from metastatic breast cancer. This post originally ran in April 2013.)

This picture is from October, 2011, when my husband Bruce, his brother Jeff, and our friend Pam went to Napa. Pam’s hand is in the lower right in the picture. You can see how swollen it is in spite of the lymphedema sleeve peeking out from the bottom of the frame.

It was Pam’s idea to take the picture of our hands raised in one of our many toasts. She knew we were making memories to last the rest of our lives, in her case, six months. She gave framed copies to all of us for Christmas.

It’s been a year since she left us, a year filled with memories and disbelief that she’s actually gone. We started letting go of some things and hung to others as long as we could. Bruce still has a picture of Pam as his cell phone wallpaper. I swapped mine out a few months ago, but like him, saved her texts. When we went on our second pilgrimage to sleep with the sandhill cranes in March, we planned to laugh over the text messages she sent on our previous trip. We were both shocked to see her text messages had disappeared. It felt like she was being erased.

The song “Seasons of Love” from Rent asks how you measure a year, or 525,600 minutes. “In daylights, in sunsets, in midnights’–then asks “How about love?” and urges us to “Celebrate” and “Remember a year in the life of friends, Remember the love!”

525,600 minutes later it still hurts like hell, but we remember the love.

My other posts about Pam:

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.