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.

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.

Breast Cancer and Disability Benefits

(Editor’s note: This guest post is from Molly Clarke on behalf of the organization Social Security Disability Help. It is not affiliated with the Social Security Administration.) 

Breast cancer and its treatment effects can make it impossible to work. The resulting loss of income and medical insurance can cause a significant financial burden. If you find yourself facing these circumstances, you may be eligible to receive Social Security Disability (SSD) benefits.

The Social Security Administration (SSA) governs two programs that offer financial assistance to people who can no longer work due to an illness or disability.

Social Security Disability Insurance (SSDI) is funded by the FICA taxes that most workers pay into the system. Eligibility is based on an applicant’s work history and the amount of taxes they’ve paid throughout their career. The SSA assigns “work credits” to each quarter an individual works and pays taxes. See if you meet the work credit requirements for SSDI here.

Supplemental Security Income (SSI) is a needs-based program that provides financial assistance to disabled, elderly, or sick individuals who have very little income. Unlike SSDI, SSI is based on financial standing. It is a good option for people who may not have earned enough work credits to qualify for SSDI. Learn more about the financial requirements for SSI here. In some cases, individuals may qualify for both SSI and SSDI.

Breast Cancer Criteria

In addition to the technical requirements listed above, applicants must meet certain medical requirements. The most basic requirement is to meet the SSA’s definition of disability. Essentially this means that you must have a serious health condition that prevents you from working for at least a year.

Although breast cancer can be debilitating at any phase, the SSA has very stringent requirements to qualify for SSD with breast cancer. Unfortunately this can make it very difficult—but not impossible—to qualify with early stage breast cancer.

Typically, applicants’ conditions and symptoms are analyzed by the SSA in accordance with their official guide of disabling conditions known as the blue book. The blue book listing for individuals who have breast cancer requires that your cancer is a carcinoma that has advanced locally, including metastases in your breasts, chest wall, skin, and/or lymph nodes. You may also qualify if your cancer is recurrent and does not go into remission despite receiving appropriate treatment.

Requirements are stringent because cancers that meet these standards are expected to last at least 12 months—satisfying the SSA’s definition of disability. However, if you do not meet these specific requirements, you may still be able to qualify if you can provide medical proof that your cancer and cancer treatments are expected to last at least a year and keep you from working

If it has been determined that your breast cancer is inoperable, unresectable, or has distant metastases, you may qualify for compassionate allowance processing. This program allows individuals with particularly serious conditions to be approved for disability benefits in as little as 10 days. There is no separate application for the compassionate allowance program. The SSA will determine whether or not you qualify and will expedite your claim accordingly.

Starting the Application Process

The SSA requires that applicants provide documentation of their education, employment history, financial history, and most importantly their medical history. You should collect documentation of your diagnosis, laboratory tests, treatments, reaction to treatments, history of hospitalizations, and even personal notes from your doctor and submit them with your application.

It is important to have documents ready prior to beginning the application process so that there are no delays. Once you are ready to begin the application process, you can do so on the SSA’s website or in person at your local Social Security office. If you decide to complete your application in person, schedule an appointment in advance to avoid delays.

The SSD application process can be extremely difficult to navigate. If you find yourself overwhelmed or confused, it may be in your best interest to retain the services of a qualified disability attorney or advocate. He or she will have a thorough understanding of SSD benefits and will be able to guide you through the application process to ensure that you don’t make any mistakes.

Appealing a Denial

Many applications are denied due to lack of medical evidence or small technical errors. If your initial application is denied, do not panic. You are allowed to appeal this decision. It is important to remember that no matter how difficult it may be to be awarded disability benefits, these programs exist to help you. Do not give up. Once you are awarded benefits, you will be able to focus on your health instead of your finances.

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.