Breast Cancer

Pinktober

I used to think Breast Cancer Awareness Month was a good thing. We need to raise awareness…to encourage dialogue about breast cancer…to reaffirm our commitment to saving second base! That’s no longer the case.

Pink products and pink-themed fundraisers associated with Breast Cancer Industry Month represent money given to people and organizations that are not necessarily committed to finding a cure or helping those dealing with this disease.

Interested in buying a pink product? 

Here are my tips for how to think before you pink, as Breast Cancer Action implores!

  • Is the product a safe product? (A pink ribbon on a gun doesn’t change the fact that a gun is a weapon. Likewise, if there’s a connection between breast cancer and obesity, a campaign involving a pink tub of fried chicken doesn’t make a lot of sense.)
  • Does the product contain toxic ingredients linked to cancer? (These are especially common in bath and body products, including perfume, lipstick and lotion.)
  • Is it clear where the money raised from this product is going? Is a specific charity listed as the beneficiary of all funds raised? (Prior to my diagnosis, I bought checks and address labels with the pink ribbon on it. I have no idea which organization was the beneficiary.)
  • How much of the money goes to the cause? Is there a cap on how much the company will donate? Or, is this all just a smart marketing campaign to seem altruistic, while raising corporate profits?
  • Is there a guarantee that the money is going to the cause? Does this corporation have a successful cause marketing record in the past?

Apply a similar check list to Pinktober events designed to raise money for the cause.

  • When you buy a ticket to an event or make a donation to a breast cancer organization, how much of your money is going to what exactly?
  • Is the organization transparent and diligent with respect to its financial records and reporting?
  • For organizations focused on the rather nebullous “raising awareness,” what does awareness consist of?
  • How much money goes to event expenses, overhead and salaries?
  • Are there patients and survivors at these events as a testament to how the organization has directly helped them?

What are your thoughts about Breast Cancer Awareness Month? How do you decide which pink products to buy and which organizations to support? 

For more information before you buy pink or participate in a walk related to breast cancer awareness or research, check out Think Before You Pink! here.

Roya’s 1st Shoot with Uncle Moshe

I first heard about Moshe Zusman in 2010 from friends who were amateur photographers in DC.  They espoused the virtues of his talents, which are easily apparent when you see his work.

I met Moshe several weeks later at Fashion for Paws. I was surprised at how amiable he was. That was reaffirmed when he casually and humbly gave one of my friends advice while she took a photograph at the event. (He didn’t even tell her who he was or that he did this professionally!)

After I was diagnosed with breast cancer, Moshe and I went to lunch. We had an instant rapport with each other, but I have a feeling that I’m not the only one of his friends to say that! He offered to take photographs of me during chemo, which he did later that month. (If you haven’t seen those photographs, click here.)

Moshe managed to make me feel beautiful in the chemotherapy room, which was no easy feat! More importantly, he brought joy into my life at a time when I truly needed that. I fondly remember laughing so hard with Moshe and two of my best girlfriends during one round of chemo that we almost got in trouble with the nurses!

Even after Moshe put his camera down, he continued to be there for me…on my last day of chemo…after my double mastectomy…when I told him that I was expecting…and many days in between. There are those moments after giving birth that I’ll never forget and tearing up with Moshe when he saw me with Roya is among them. We've come a long way since the chemotherapy room!

Moshe took our first formal photographs of Roya when she was six weeks old. I hope that you love them as much as we do!

Thank you, Moshe, for these beautiful photographs! Far more importantly, though, thank you for treating me like I’m one of your family and for being Roya’s Uncle. We love you! 

I Can’t Breastfeed…Nor Would I Want To

“I wish I had gotten a double mastectomy so I would have had an excuse for not breastfeeding. I was in tears when Emily couldn’t latch, and the nurse kept forcing me to try.”

“Well,” I told my friend with an odd look in my eyes, “I’m very thankful that you didn’t have breast cancer or a double mastectomy. I just wish that there wasn’t such societal pressure to breastfeed and you hadn’t felt as though you were an inferior mother when it didn’t work.”

Since I announced that I was pregnant, I’ve received a lot of questions about whether I could breastfeed. I typically answer with a version of the following:

No nipples. No milk ducts. No desire.

If someone probes further, I let them know that even if I could have breastfed, it's far from ideal to pass more of my immunities onto my daughter. (I fully appreciate that there are proven health benefits to breastfeeding, but I don’t think women with my health issues were the subjects of any of these studies!)

Other factors that contribute to my views that the breast isn't always best:

  • Several of my friends who breastfed were exceptionally sleep deprived. That, in turn, played a contributory role in them suffering from Post-Partum Depression;
  • Since breastfeeding is the mother’s responsibility, I've noticed that the father often feels excluded or disconnected from parenting in the early stages. For numerous couples, that has led to resentments and relationship problems in the first months after having a baby;
  • Breastfeeding is linked to significantly lower libido in women; and
  • Quite a few friends found breastfeeding problematic because their children needed more milk than their breasts produced and/or their babies had trouble latching. They thus needed to introduce formula to supplement their breastfeeding while they were in the hospital. A desire to breast feed doesn't necessarily translate into the ability to do so.

(The above list is a collection of my observations from a dozen friends who have struggled with breastfeeding.)

Pediatricians recommend breastfeeding as the preferred option, but it concerns me that it's viewed societally as the only option. I don’t regard such absolutes as healthy, as they exacerbate the pressures of caring for a newborn in the midst of dramatic hormonal changes. A woman is not less of a mother if she doesn't breastfeed, and no one has the right to make her feel that way.

Throughout my pregnancy and since giving birth to Roya, I was never asked the simple question, “Are you breastfeeding, bottle feeding, or both?” Everyone assumed that I was breastfeeding. Telling people, even health care professionals, that I’ve had a double mastectomy tended not to resonate either. A double mastectomy isn’t a boob job! During a double mastectomy, everything under the skin is removed. Everything. I also didn’t have the luxury of having nipple-sparing surgery since I was diagnosed with invasive breast cancer. Despite the biological impediments to me breastfeeding, I still find it fascinating that people automatically presume that I would want to breastfeed.

Breastfeeding like so many other parenting decisions is a choice. Choosing to bottle feed should not be met with judgment regardless of the reason for doing so.  I’ll respect your choices as to what’s best for your family. All I ask in return is that you respect mine.

The T-Shirt That Made Me Cry

The Man describes me as a sentimental unsentimentalist. Or, maybe I’m an unsentimental sentimentalist? However you phrase it, he's right. When it comes to my personal relationships, I’m incredibly sappy. (Why, yes, I’m the girl who is tearing up in the card aisle at CVS after finding the perfect card for a loved one!) On the other hand, I view many things, including pregnancy, pragmatically. That is, until I put on a t-shirt.

“What t-shirt caused me to have tears streaming down my face?”

The Survivor T-Shirt for the Komen Global Race for the Cure.

Several of my friends and I have participated in the walk for the past several years. However, I haven’t raised money for Susan G. Komen since the Planned Parenthood debacle. My tolerance for linking the cause to all things pink has also waned. Nonetheless, I’ve felt it important to register and walk with my breast cancer sisters and other supporters of the cause.

This year’s walk was held on May 11th, which was a rainy day in Washington, DC. I deferred to one of my best friends who has lost far too much to this disease as to whether we would actually brave the walk or just meet for brunch after. She chose to bypass the rain and focus on brunch.

When I awoke on the morning of the 11th, I decided that I would walk my own 5K down to the National Mall for the closing ceremonies, then to brunch and then back home. I put on the survivor shirt that Komen sent me and went into the bathroom to finish getting ready. The walk happened to coincide with the week that my belly had finally grown past my boobs. As I looked in the mirror, I noticed that the first three letters in survivor hugged against my baby bump.

I proceeded to cry…hard. I cried for all that had transpired in the less than three years since my diagnosis. I cried for what I had lost, but far more importantly, I cried for what I had gained. I cried for the fact that not only had I survived, but I was giving birth in less than three weeks! Despite all the odds, my body was doing something normal and healthy!

I dried my tears, finished applying my makeup and headed down to the Mall. I found myself beaming and actually embracing my growing belly with pride. I lost count of the number of smiles, looks of surprise and comments that I received. My smile got progressively bigger with each "Oh My God!" and "Wow!" that I heard!

At a recent conference for Young Survivors, attendees to a session on fertility were told to expect that they would never get pregnant. Maybe they won’t. But, it’s worth spreading the word about organizations such as Fertile Action devoted to helping women preserve their fertility before they start treatment. And, it’s worth believing in miracles since they do happen despite all odds! The fact that my daughter is asleep in my arms while I type is proof of that!

50 Shades Class on The District Dish

I always have a great time being interviewed on The District Dish with Kate Michael of K Street Magazine! This month, I was featured on the show for my class on The 50 Shades Trilogy. I thoroughly enjoyed having the opportunity to speak at length abut the class and help debunk some of the misperceptions about sexuality studies and what I'm teaching. You can catch the full interview here:

 

 

I learned at the interview that I was the only guest to be featured on The District Dish three times! Some of you might recall my first interview as an anonymous relationship and sex blogger with my face pixeled out. Sixteen months later, I was back at The District Dish table talking about my breast cancer journey and the Komen Race for the Cure. My, how things have changed!

Hope you enjoy the interview!

Pregnant After Cancer

I’m not a fan of pregnancy websites.

I haven’t bought a single book about pregnancy or parenting.

I have little interest in receiving well-intentioned advice from my friends who are moms. Likewise, I'm not one for rejoicing or commiserating much with my friends who are pregnant.

With only three months left to my pregnancy, I only just started a registry.

People who don't realize how much experience I have with infant and child care misperceive my actions – or lack thereof – as denial or uncertainty. I don’t think it’s either.

I’m pregnant after cancer.

More accurately, I’m pregnant:

I’m charting my own unique path yet again. In doing so, I’m trying to navigate the joys and fears of expecting a baby after cancer.

The joys are numerous, and I recognize what a blessing and miracle this is! My body defied the odds to conceive naturally at my age following chemotherapy-induced menopause. And, I’ve thankfully had a great pregnancy thus far. The doctors couldn’t be happier with how she’s developing and how my health is faring. For the first time in my life, I'm hearing words like, "perfect" and "better than normal," in reference to my health!

I also find myself far less stressed than the overwhelming majority of my pregnant friends. I’m used to changes with my health, my weight, my activity level, and my sleep. Doctors’ appointments were already a part of my weekly routine, and I’m actually taking fewer vitamins now than before I was pregnant. Listening to my body, heeding my doctors’ advice, and restricting my schedule as needed have been my default modes.

The concerns that accompany being pregnant after cancer also seem more pronounced.  A cancer patient’s risk of recurrence drops noticeably after five years in remission, and I’m not even halfway to that milestone. I’ve had health issues since I was a baby, and three of my conditions have a genetic component. The doctors also believe that my mom and I carried a genetic predisposition for breast cancer with a gene that has yet to be discovered.

To add another layer to the mix, I am an only child. My daughter will be an only child. I lost my mom to cancer when I was 24 years old. I was diagnosed with cancer at the age of 37. (I could have easily titled this post, “Pregnant After Losing Your Mom To Cancer and Then Having Cancer.”)

I know that I will raise my daughter to be aware and proactive about her health. But, I pray that she doesn’t have my genes, as I simultaneously hope that medicine continues to advance with each passing year.

Those concerns exist, but they’re on my mind far less than the larger fear:

That my cancer will return and I won’t be around to watch my daughter grow up.

There, I said it. It doesn’t make the fear any less scary. It doesn’t mean that I have any more control over the situation. But, it’s one explanation for why I’m going to view pregnancy differently from most.

Yes, I’m grateful to be in remission. But, 30% of breast cancers return in a metastatic form. The women who must face a Stage IV recurrence have just as much fight and faith (if not more!) as those whose cancer doesn’t return.

After reading a post from Lisa Adams in which she describes talking to her teenage daughter about her metastatic breast cancer, I sat in front of my laptop and sobbed. I have the same reaction when I read Facebook posts from my friend with a Stage IV recurrence. She just wants to be with her children as much as she can for as long as she can.

I feel my fear when it hits me. I cry for a few minutes. I say a prayer and trust in God's plan. And then, I move on. There’s only so much emotional energy I can devote to the unknown…or a registry…or a pregnancy side effect. I don’t know any other way to be.

Looking for Another Word

Both my friend and I were diagnosed with early-stage breast cancer in 2010. We followed our doctors’ recommendations regarding surgery and treatment to a tee. In 2011, we both rejoiced over the scans that showed we were cancer-free. We had beaten breast cancer! We were survivors!

For over a year, I had worn the survivor badge with pride. I earned it after all, didn’t I?

As I became more active with the online breast cancer community, I noticed that many of the advocates I admire didn’t use the word, “survivor,” when referring to themselves. The documentary, Pink Ribbons Inc., provided some clarity regarding these women’s decision not to embrace survivorship.

In her review of the film, Brenda Sabo explains:

The cultural norm within pink ribbon implies that if one complies with treatment, if one battles hard enough or if one is strong enough cancer can be beaten. In essence, the message emerging from the promotion fails to achieve a balance between hope, understanding and the reality of breast cancer — it kills up to 59,000 women in North America every year.

For women with advanced disease the message is about personal failure, of losing the battle. As one woman stated, “You can die in a perfectly healed state.” Survivorship is a label, an unintended put-down of women and men who don’t survive, who were unable to beat the disease.

Advanced breast cancer, also referred to as Stage IV or metastatic, means that the cancer has spread beyond the breast and lymph nodes into an organ. Women who have Stage IV breast cancer have a 15% chance of survival after five years. Thirty percent of women with early-stage breast cancer will develop metastatic breast cancer. Despite those statistics, only 2% of the budget for breast cancer research goes to research to benefit patients with metastatic breast cancer.

Lately, I’ve been thinking a lot about Stage IV breast cancer. My friend is no longer in remission. Her breast cancer has returned and is now in her lungs and bones. She was told to get her affairs in order.

I pray for a miracle for her and for all those who are battling terminal illnesses. I pray for the day when there is a cure, and everyone can be a “survivor.” Until that day, though, I’m looking for another word.

Any suggestions?

What’s the Right Way to Deal with a Cancer Diagnosis?

Every month, I receive calls from women who were recently diagnosed with breast cancer. Almost all of these women ask me the following:

How should I deal with my diagnosis?

My answer is always the same:

There is no right or wrong way to deal with having cancer. Just do whatever you need to do to get through this. Friends of mine have been criticized for not talking about their cancer enough. I was criticized for talking about it too much. It’s easy for people to speculate how they will feel upon hearing that they have cancer or require chemotherapy, but no one really knows how they’ll react until it actually happens to them.

This advice isn't difficult to comprehend or heed in theory, but in practice, that's another story entirely.

As I continue talking to each of these women, there is usually mention of a loved one who is responding differently than she would have hoped for or expected. There’s always at least one person in her life that accuses her of using cancer to get special treatment. There’s that boss or co-worker who believes that treatment or surgery shouldn’t impede her from attending to all her work responsibilities at the same pace as before. There are those who don't understand why she isn't back to her old self immediately after treatment is over.

It should be enough to respond to these criticisms or comments with, "This is cancer! This isn't a cold!" But, it's not. The challenge in dealing with how others process our cancer is compounded by the fact that most of us have a natural inclination to try to please others. We want to do the best that we can in every role that we play. We want to make our loved ones and our employer happy. We try not to be selfish or self-absorbed.

With cancer, however, we need to focus on ourselves. We need to set boundaries and put our health first every minute of every day. We can’t worry about how other people deal with our cancer; we have enough to worry about in dealing with the disease ourselves.

As a final piece of advice, I remind the patient to go easy on herself. The average woman who contacts me is in her 20s or 30s. This experience is likely to be the most significant and difficult journey in her life up to this point. And, unfortunately, the overwhelming majority of people her age won’t have any frame of reference. Nonetheless, it’s important for her to talk about the experience when she feels comfortable doing so and asking for help from at least a few loved ones. There will be those people who don't get it, but thankfully, there will be some who do.

So, readers, what advice would you give to people newly diagnosed with cancer or a major illness? If you've had a loved one battle cancer, how did you show support?

Getting More Information

October 19-22, 2012

I headed off to North Carolina to relax with several girlfriends at lake house. I didn’t think much about being pregnant while I was away since I assumed that the odds of the doctors letting me try to carry to term were so miniscule.

When I returned to DC from the lake, I couldn’t avoid reality for any longer. As I spoke with my gynecologist, she indicated that I didn’t seem 100% comfortable with terminating the pregnancy.

“I guess that’s because I’m not,” I responded. “There are so many health concerns that I bring to the table! But…there’s this part of me that feels as though this is a miracle…that so many odds had to be beaten for me to even get pregnant…what if this is part of God’s plan?”

“Well, what do your oncologist and neurologist say about this?” the doctor inquired.

“I haven’t called them,” I admitted. “I just didn’t want to hear that this wasn’t possible from all these doctors since that would make this even tougher.”

“I think you need to get more information so you truly know what your options are.”

“You’re right. Thanks!”

On Monday, October 22nd, I spoke with six of my doctors.

I wish that I had video of their reactions at the news that I was pregnant at the age of 39 after chemotherapy-induced menopause. One of them cursed. One started to stutter. One of them was silent. And, not surprisingly, all of them were shocked!

It was my turn to be shocked, though, as my entire medical team ranged between neutral and excited about me trying to have a baby.

My oncologist informed me that previous research had discouraged breast cancer survivors from getting pregnant within several years of finishing treatment. However, a recent study indicated that pregnancy would slightly reduce my risk of recurrence.

“The researchers couldn’t say why that was the case in the women who were studied,” my oncologist continued. “It might be psychological, but no one really knows.”

My neurologist said that even though my migraines weren’t hormonal, pregnant women typically experience fewer migraines than when they’re not pregnant.

“Pregnancy could actually be good for you!” she surmised.

My internist has known me longer than any other doctor. He explained, "I think you could safely carry to term, but I’m more worried about how your health will be after you give birth. You would need a lot of extra support to ensure that your other conditions don’t get worse or that if they do, your baby would be well taken care of."

“I had figured that much. We know how my health is when I don’t get enough sleep, and newborns are the antithesis of a good night’s sleep!”

I hung up with my internist and felt both positive and pensive. The medical obstacles that I had thought would impede me from trying to carry to term were no longer.

Could this actually be possible? And, if it was, did I want this to be possible?

I had always planned to adopt because I never envisioned myself pregnant or parenting a newborn. The expression, “If you want to make God laugh, make a plan,” kept going through my head.

I had an appointment with a high-risk obstetrician in two days.  I had some time to formulate my thoughts, and I knew that I needed to hear hers.

To be continued…

As a PS, I won’t be exclusively writing about my pregnancy from hereon forward. I’m just trying to catch everyone up to the present day so that you know how I’m doing and how the pregnancy is going.

Taking the Test

Tuesday, October 16, 2012

I left my friend at Starbucks with one thing on my mind:

Chicken Wings from TGI Friday’s.

I couldn’t remember the last time I ate chicken wings or went to Friday's. As I walked to 2000 Pennsylvania Avenue, I realized that I had been craving a lot of different foods over the past few weeks. I couldn’t get enough tofu, egg salad and chickpeas, and yet, I was passing on the beef dishes that I normally loved.

I wondered for a moment if I could be pregnant and reviewed the miniscule chances of that in my head:

  • The average 39-year-old woman has approximately a 7% chance of getting pregnant in a given month.
  • I was in full chemotherapy menopause for over a year. Even though my periods had returned, I was still experiencing some menopausal symptoms.
  • Chemotherapy increases the risk of infertility and damages eggs, especially in women who are in their 30s and had high doses of chemotherapy.

I ordered my chicken wings from the carryout counter and went across the street to CVS.  It was easy enough to pick up a pregnancy test for the peace of mind.

Fifteen minutes later, I headed home with my chicken wing sampler and the test.

After eating two wings, I went into the bathroom. I began to count the requisite seconds and before I had even reached, "Five Mississippi," the test was positive.

I stared at the test and started to scream and sob hysterically.

“Noooooooo! Are you kidding me? What are you doing to me, Lord?!?” I looked up at the ceiling and yelled. “”Why are the odds of this? What kind of cruel lesson am I meant to learn here?”

Why, given my desire to be a mom, did I react this way?

Well, between my chronic migraines and highly toxic migraine medicine, the fact that I wasn’t even two years out of treatment for breast cancer, and my genetic health conditions, I couldn’t imagine that my doctors would give the green light for me to even try to carry to term.

As sad as I was, I did my best to dry my tears. I’d call my gynecologist first thing in the morning. I couldn’t do anything else at this late hour so I just tried to relax and get some sleep.

To be continued with a thankfully much happier tone…