Breast Cancer

Health Advocacy Found Me

Shortly after I was diagnosed, one of my doctors said:

I hope you don’t take this the wrong way, but out of all of my patients, if one of them had to get cancer, I’m glad it was you. I don’t worry about you not being able to handle it.

I laughed out loud, as I understood her thought process. I've been advocating for my own health since I was a teenager. I knew the system and how to interact with doctors, and I could use those skills to my advantage as I battled cancer.

I’ve become a Subject Matter Expert in health advocacy because I had to.

My first memories are of being in the hospital as a toddler. During one stay, my mom and I were both in the hospital at the same time.

At 16, one of my lymph nodes was sent to medical facilities from California to Boston to Minnesota to be studied. I would later be accepted at NIH for a study related to this condition.

I started to go paralyzed at the age of 20.

My mom passed away from cancer of unknown primary origin when I was 24.

I had unexpected complications from neurosurgeries in my early 30s. Those complications have caused me to have repeated concussions and Post-Concussion Syndrome.

I’ve been in physical therapy 10 out of the past 12 years.

Since the age of 26, I’ve had 13 breast biopsies. I was diagnosed with breast cancer in 2010 at 37.

My health has always been unique, and doctors are typically fascinated by my body. Managing my health is a full-time job. But, most importantly, I’m still standing! I have so many blessings in my life, and health insurance, a wonderful support system, and a great team of doctors are high on that list. And, despite everything that I’ve been through, I’ve never – knock on wood – thought I wasn’t going to survive.

Over the course of my life, I’ve had more than 25 MRIs. I must admit that the one on Monday was slightly stressful, though. As I type, I’m staring at my telephone, trying to will it to ring with a call from the doctor with the results. I just keep telling myself silently,

I’m cancer-free. I’m cancer-free. I’m cancer-free.

As I was on the table during the test, I realized that all of my life experiences brought me to this point for a reason. I needed to be an advocate for myself so that I could be an advocate for others. This is where I’m meant to be, and I’m thankful that I’m here in every sense of the word to do that.

It’s a New Year. Please be on top of your health, self-exams and annual doctors’ appointments. Please. xoxo

What negative have you turned into a positive?

2011 Wrap-Up

To paraphrase Charles Dickens, 2011 was the best of times and the worst of times for me.

Lessons I wish that I didn’t have to learn this past year:

  • That chemotherapy, the accompanying medications and low blood counts cause you to forget a lot of things that happened during treatment
  • That two people I considered close friends would belittle my cancer and judge how I handled it
  • That the hardest part of treatment is when it’s over because you don’t suddenly feel better – inside or out
  • That during menopause you: 1) are hot all the time; 2) can’t sleep well; 3) can’t get wet, even when you’re turned on; and 4) are moody and irritable
  • That Philly Matt not only didn’t have my back when the chips were down, but wasn’t an authentic friend or boyfriend
  • That not all charities and advocates are truly about the cause
  • That there was an expiration date to realizing that Best Boy was right about the fact that we'd be a good couple
  • That I have a long way to go before I look in the mirror and like what I see post-cancer
  • That the side effects from hormonal therapy for breast cancer can outweigh the benefits of taking the medication in the first place
  • That hearing about how great my short hair looks causes me to cringe because I didn't choose this
  • That far too many people have encountered the same feelings and reactions that I have during and after treatment

What I’m thankful for over the past year:

  • My amazing friends
  • Teaching, my students and my university. The joy I experience from teaching has been a huge unexpected blessing for me in 2011!
  • Not having to worry about a roof over my head, the clothes on my back, health insurance and food in my stomach
  • Best Boy and a dating life that's interesting without much drama
  • My doctors
  • My health
  • The comfort I get from my faith
  • Feeling like I’m doing just what I’m meant to do with respect to this site, my charitable endeavors and my advocacy work

Despite so many blessings, I can't wait to ring in 2012. I wish that I didn't learn so many hard lessons this year, but I know that in the long run, I'll look back on this year as one of huge personal and professional growth. For now, though, I can't wait for 2011 to be over, and I'm praying for a peaceful and healthy 2012.

I hope that you all have a wonderful New Year’s Eve and that 2012 brings you much for which to be thankful!!! xoxo

My thoughts on People Magazine’s cover story

My heart goes out to Giuliana Rancic. I admire her strength in dealing with fertility issues and now breast cancer in a very public eye. I join her millions of supporters in keeping her health, recovery and hopes in my thoughts and prayers.

When I saw Giuliana on the cover of People Magazine, I felt her pain through her words and photographs. I also felt thankful that we now live in a society in which we can talk about breast cancer openly. There was a time not so long ago when that wasn't the case.

With those disclaimers, I had some problems with the medical information included in the article:

“That recovery [from a double mastectomy with immediate reconstruction] is expected to take two weeks.”

Two weeks?!? Two weeks? I’ve fought a cold longer than two weeks!

People Magazine, I realize that you’re not known for investigative journalism, but I still hoped for more accurate information from your publication!

Following a double mastectomy with immediate reconstruction, a woman is likely to be hospitalized for several days to a week. She may be sent home with drains coming out of her breasts. Depending on where the extra tissue came from (her back, underarms and stomach are all possibilities), she may also feel a significant amount of pain in other areas.

The recovery time for reconstructive surgery alone is six to eight weeks. That estimate is increased when mastectomies and reconstruction are done simultaneously because that’s a more traumatic procedure on a female’s body.

The surgical recovery time also fails to factor in the need that many women have for physical therapy once they are recouped. Mastectomies and reconstruction make it difficult for women to move their arms, stretch their chest and rotate their shoulders. Physical therapy might be required to assist with increasing strength and mobility.

And, what about the emotional recovery piece? We live in a culture that reveres breasts as symbols of femininity. Battling cancer and frequent hospital visits and surgeries can also take their toll on a woman’s peace of mind. An estimated 30% of women beat breast cancer and experience depression. Another 20% suffer from body image issues.

I also cringed when I read the statement in the article from oncologist Dr. Guiliano that “in some conditions…it [attempting IVF after surgery for breast cancer] is quite safe.”

I’m not a doctor, but it doesn’t take a medical degree to put the pieces of this puzzle together.

If a woman has breast cancer that tested positive for estrogen receptors, the cancer fed on estrogen and hormonal imbalances. About 75% of breast cancers are estrogen positive. IVF, pregnancy and childbirth cause dramatic fluctuations in the hormones in a woman’s body.

The decision to try IVF or get pregnant after battling certain types of cancers should not be a precipitous one. Women understandably look up to and identify with a public figure like Giuliana Rancic. People Magazine, it was worth throwing in a disclaimer that each woman’s experience with the disease and fertility is unique and that each woman should consult with her doctor to determine what is in her best interest.

Giuliana, I pray that your recovery is as quick and painless as possible.

People Magazine, I hope you recognize that you can empower women to be better health advocates and be more informed through your publication.

Readers, the year is almost over! What can you do to take care of your health more in 2012? Are there medical appointments that you need to be making?
 

A Blip

During my interview 14 months ago with Let’s Talk Live, I mentioned that cancer would be “a blip” in my life. By “blip,” I meant that there was a clear beginning, middle and end. I would beat it, and then I would be done. I wish I could be so blissfully ignorant now.

After I was diagnosed with cancer in June 2010, I didn’t start treatment for three months. My breast surgeon was on vacation the week I was diagnosed. I needed three weeks to get an MRI and receive four more breast biopsies. Then, I had my lumpectomy and another surgery to remove just the right amount of clean breast tissue. And, then, we waited for a lab in California to return with the results about what type of breast cancer I had. When the results came in, they differed from the results from a lab in Maryland so another test was run.

The waiting was annoying, but I had one of the best summers that year. My life consisted of boys, blogging, breast biopsies, minor surgeries, and bopping around between charity and social events. That summer was so wonderfully vapid!

In the summer of 2010, I would have easily responded to you with a list of loved ones who would be there for me if I needed chemotherapy. I never imagined that some of my closest friends wouldn’t be there for me. Those people are not among my close friends anymore. Either you are in or you are out when it comes to being there for those you love. I wish I didn’t know at such an early age who would be there for me when the chips are down.

In the past two weeks, I’ve encountered several people who I apparently met earlier this year, yet I have no memory of meeting. I’ve also heard three stories from friends about events that transpired during treatment of which I have no recollection. I appreciate that I was given medicines that can cause temporary amnesia, but I still find that disconcerting!

My doctors regard the success of my treatment based on how long I go without my cancer returning. Decades are obviously better than years, and years are better than months. If my cancer returns within five years, my oncologist would talk about odds and the difficulties of being diagnosed at a young age with an aggressive type of cancer. He might even mention my family history of cancer or my own unique health history. He wouldn’t understand my perspective.

If my cancer returns in the next few years, I would not feel as though my treatment was worth it.

If my cancer returns next year, I would not do chemotherapy again. Period. I believe that life is meant to be treasured and that we need to respect our bodies. But, life is also meant to be lived! I required three or four days of IVs for every day of chemotherapy. To me, that does not consitute living life to the fullest.

I trust that God has a plan for me. That doesn’t mean that I need to like every stage of this journey, though. In the meantime, I'll try my best to keep my tears and frustrations to a minimum. I'll try to focus on how all the blessings in my life and trust that all of the treatment worked. But, that doesn't mean that a day goes by in which I don't miss my long hair, my old body and how carefree I was before treatment started.

I hope and pray for the day in 2016 in which I'm so much wiser than I was when I was diagnosed, but with the same amazing hair flip!


 

Summer Session

I picked when I’m teaching next summer based upon when I might need to get a double mastectomy.

That’s one of those sentences that I never imagined typing.

Getting over cancer isn’t like getting over a cold. It’s unfortunately not that simple.

I pride myself on my ability to keep stress about “What ifs?” to a minimum. Life is filled with unknowns, and I’m not about to limit what makes me happy in the present because of a distant possibility in the future.

My health situation doesn’t fit neatly in that box, though.

The nurses suggested that I keep my medi-port in for at least a year.

My breast surgeon said that I’m a strong candidate for a double mastectomy given my health history, my mother’s health history and the fact that I can’t tolerate hormonal therapy. Getting a preventative mastectomy in the non-cancerous left breast would reduce my risk of breast cancer to 5%. Getting a mastectomy in the right breast where there was cancer would reduce my risk in half to somewhere between 10-15% of recurrence within five years.

From a cosmetic perspective, the breast surgeon noted that my breast were saggy. (Hey, big naturals aren't known for being perky.)

The breast surgeon recommended that we talk about mastectomies next year.

The subtext of the surgeon and nurses’ comments:

Let’s wait a year to see if your cancer returns or not.

I don’t like to assume what people are saying without asking them directly. When I inquired with my breast surgeon if that was where she was coming from, she nodded.

Me: You realize that you and the oncologist's office are on the same page, but everyone is assuming that I would do chemo again if this returns. I can't say that definitively. [My surgeon looks at me with wide eyes.] We'll cross that bridge if — God forbid — we need to.

I’m not about to approach my life any differently than I have in the past. (Well, at least with respect to my health…) Aside from my biopsy in July, I don't allow myself to give much energy to the thought that my cancer will return.

However, I do need to be cognizant of the fact that there is a strong chance that I’ll need several surgeries next year. I’d rather teach my class early in the summer and then have the flexibility to deal with this issue in July and August.

There’s a fine line between not stressing about “What ifs?” and being prepared for the “What is likely to be.” I’m straddling that line like it is a pommel horse. I try to allow myself a few minutes to feel angry, sad and confused, and then I let it go until the next time those feelings hit.

The next time you meet someone who has beat cancer, you might consider asking how he or she is really doing. Until that person has reached the five-year cancer free mark, the answer might surprise you.

Are you making any plans now for 2012? What things do you expect to occur in the coming year?

Visiting the breast surgeon

I am girly-girl in all the traditional interpretations of that stereotype. My love of pink has carried over throughout the decades. (The owner of Nido, a Georgetown boutique, has commented that she can't look at a pink purse without thinking of me.)

I don't know how I feel about people sporting pink in October in honor of Breast Cancer Awareness Month, though. What message does that color send to women about their gender and sexual identity? Does all that pink really translate into people taking more responsibility for their own health? Where does the money that is raised from the sale of pink ribbons and other similar items go to? There have been so many advancements in breast cancer research and acceptance about the disease. But, have we become to immune to how much more still needs to be done before there is a cure? Does pinkwashing lead to better preventative and early detection practices? Or, does it just dilute the message and the cause as a whole?

What are your thoughts on the pink?

Yesterday, I had to visit my breast surgeon. Here's why:

 

And here's what my breast surgeon said:

 

The pink don't mean a thing if you ain't feeling your boobies! If you'd like to read more about preventative mastectomies, here's some information from the Mayo Clinic.

I care. xoxo

Glass Half Full

Found out I’m in remission, but I’m not that happy.

When I saw those words appear in my Twitter feed, I immediately replied to my friend:

I’m grateful that you are done with treatment, but I get it. Call me if you want. Love you!

My telephone rang one minute later.

We talked about how people who haven’t been through it can only sympathize so much, despite their good intentions. I let her know that as someone who loves her, I am thrilled that she’s cancer-free. But, as a fellow cancer survivor, I appreciate all too well that her life doesn’t just return to how it was before her diagnosis.

Our perspectives have changed. Our priorities have changed. And, our relationships have changed.

We faced a "new normal" during treatment, and now, we're adjusting to another "new normal" with the end of treatment. Life is full of trials and tribulations like this but that doesn’t mean that they are easy to process or for others in our age group to understand.

I have always been cognizant of and thankful for the many blessings in my life. Even on my lowest days, my glass has been at least half full.

But, when your glass is half full, it’s also half empty. That analogy applies to how I feel like now that I’m done with treatment. I’m elated to be finished with chemotherapy, radiation and herceptin IVs, but the experience still looms over me like a dark cloud in the distance.

1. It’s a hairy situation. Chemotherapy causes the hair on your head to grow at a slower rate than normal. The chemicals also cause most women's hair to curl. Because of how thick and curly my hair is coming in, it’s growing up, rather than down. There’s also a curly, short femullet thing happening.

I have to do more to maintain my hair now than when it was down to the middle of my back. (Before cancer, I went for a blow out once a week, and that was it.) Now, I sit in the chair at the salon with sunglasses on so the other clients don’t see me crying.

I appreciate that to others with perfectly good intentions, the presence of hair on my head makes them more comfortable. But, to me, the presence of a never-ending bad hair day is a constant reminder of what has happened.

There’s also some irony that hair doesn’t return at the same pace all over. One friend and I were kvetching the other day about how we now have more hair on our legs than we've ever had before. And, my old aesthetician is baffled as to why my eyebrow hair is growing like a Chia Pet in some spots, but not in others.

2. Keeping everything in check. One friend was diagnosed with breast cancer in early 2010. She's been in remission for over a year, but she's still in the process of getting reconstructive surgeries. The idea that mastectomies and reconstruction are done in one surgery is false!

I’ll be seeing my oncologist, radiation oncologist and breast surgeon at four-month intervals. I’ll be getting one mammogram a year and one breast MRI a year. The reason for such vigilance is that when you’re diagnosed with breast cancer at a young age, there’s a greater chance of recurrence. I have between a 20-30% chance of breast cancer returning within five years. That percentage could be much higher, but it could also be lower. I can’t give much energy to a distant possibility, but I can’t ignore it either.

During my biopsy in July, my doctors commented that I have a lot of mass and fibrocystic breasts. I reminded myself then that only 2 biopsies out of 13 over the years came back as malignant (cancerous). However, it's highly likely that I will need more biopsies in the future. Being vigilant about health matters is empowering, but worrying about whether cancer has returned is very unpleasant.

3. The change. A year ago this week, I started hemorrhaging. By the end of the month, I was in menopause. I went out of menopause in late July, but my hormones now resemble those of the average teenage girl. I’ve had one period in a year. (For those of you who are wondering, I'm not pregnant. Thankfully.)

4. Ports Ahoy! My medi-port, the small device implanted under my skin through which the doctors administered medicine and took blood, is still in me. The nurses recommended that I keep it in for a while since my veins are so bad. It’s somewhat odd to think that the only reason the medi-port would need to be used is if my cancer returns. (Hey, cancer, go away! Don’t come near me! Better yet, don’t go near anyone anywhere! A girl can dream, right?)

My glass is still more than half full, but it’s a bit of a rude awakening that no longer having cancer doesn’t exactly translate into being done with cancer.

No matter what I go through, I’ve found peace when I focus on others and the cause as a whole.

With that in mind:

If you haven’t felt your boobies this month, please do!

If you find a lump, make an appointment with a breast surgeon!

If you haven’t gotten your annual gynecological appointment yet this year, please schedule one now. Make sure your gynecologist performs a clinical breast exam in addition to a pap smear during that appointment.

If you see any abnormal moles, please call a dermatologist.

Guys, feel your balls and look at your chest, too. Call the doctor if there are any abnormalities or pain.

I care. xoxo

The light

There’s a light bulb, brightly illuminating the room that represents my life.

When my mom died in 1997, that light dimmed. Permanently.

Everyone experiences grief and loss differently, but that’s how I see it. I still get excited about all that life has to offer, and I can laugh and smile with the best of them. But, my smile is slightly narrower and my laugh is just a touch softer without my mom in my life.

As I’ve reflected on the past 15 months, I've realized that I knew from early on in my diagnosis that I would do what I could to raise breast cancer awareness and funds for research, treatment and advocacy organizations. My diagnosis enhanced and enriched my life.

I didn’t need chemotherapy to fulfill that mission, though. Nonetheless, I was forced to receive six treatments and 20 more IVs to deal with the side effects.

I look in the mirror, and I still don’t see me.

“It’s a new you,” a friend told me.

“No, this isn’t me,” I replied.

It took me a few weeks to figure out exactly why I have such a visceral response to comments about my short hair. And, then I saw the light, or rather, the light analogy. The light in the room has dimmed again, and somewhat surprisingly, chemotherapy, not cancer, was the cause.

Three years from now, my long hair will be back, but I won’t regain what chemotherapy took from me.

“That doesn’t mean that life isn’t good, right?” a friend inquired.

“Of course it is! I’m thankful this was caught early. I’m grateful for all the blessings that I have. And, I know what I’m meant to do with my life and who my real friends are. I love the wisdom and the clarity piece, but I can’t go back to the person I was before,” I explain.

The logical side of my brain knows that everything happens for a reason. I am the person that I’m supposed to be at this time in my life. But, my heart and my vanity really wish I could have skipped this life lesson.

The light has dimmed again.

However, given the aggressive strain of cancer that I had, I will always be appreciative of the fact that the light is still on at all.

The chemotherapy drugs may still be coming out of my system, but when it comes to dealing with my cancer, it’s time to close that chapter of my life. There is still – and always – much to celebrate.

Thank you from the bottom of my heart for all your support. Your comments, Tweets and emails have meant more to me than words can adequately express. (Yes, I’ve said that before, but it bears repeating.) xoxo
 

A huge up and a bit of a down

Words can’t do justice to how elated I felt when I received the call from Sibley Hospital that my biopsy was benign! I don’t have breast cancer! I don’t have to go through this all again! All is calm on the breastern front!

A day after that call, I started taking a new cancer medication. This non-chemotherapy pill has been proven to lower the chance of estrogen-positive breast cancer returning. (For those who aren’t familiar with what estrogen-positive breast cancer is or are unaware of my horrid experience with the first medication I tried, click here.)

I had polled several of my doctors about trying a second drug that’s designed to block the estrogen in my body. Most of them agreed that it wouldn’t be a good idea, given my other health issues and how badly I reacted to tamoxifen, the first drug. My head oncologist implored me, though:

This medication [fareston] is metabolized in the body differently. I have a group of patients that can’t take tamoxifen and tolerate this well. These drugs are as important as chemotherapy in preventing a recurrence.

Me: I think you should know by now that I’m not most patients. [Pause.] I’ll try it out of spite. [He looks at me with wide eyes.] I’m guessing that I’ll last three to seven days on this drug before the side effects are too severe. I’d love if you’re right, though.

My doctor then began to examine me, as I continued:

I wish you could actually bet money with your patients because I would so be winning this bet! [He doesn’t say anything, but stares at me with a scared expression on his face.]

So, how did my body respond to fareston?

On only two doses of half of a pill, I noticed that I was really, really tired. I had trouble keeping my eyes open during the day, and I slept very deeply at night. No matter how much I slept, I didn’t look rested. It reminded me of taking Nyquil.

I thought about five years like that, and I had decided that if excessive fatigue was the only side effect, I would find a way to deal with it. The benefits outweighed the risks. Maybe the doctor was right about this drug after all?

On the third day, I felt a fair amount of pain in my low back, and my vision was slightly distorted like I had a few cocktails. My mood would also go from pleasant to volatile in one second flat! (Thankfully, I don’t believe that any of the tourists or other drivers heard me screaming at them from my car!)

By the fourth day, I was dizzy, nauseous and vomiting. When that persisted for more than 24 hours, I called my oncologist to let him know that I had seven of the side effects about which you’re supposed to immediately tell your doctor. The head nurse returned my call.

Head Nurse: Stop the drug.

Me: Thank you.

Head Nurse: The doctor told me that he wants you to try it again in a couple of weeks, but I told him that I bet you’re done with this.

Me [chuckling]: You know me well!

Head Nurse: I reminded him that your other health conditions might explain why you’re reacting the way you are.

Me: Probably! My other doctors and I are in agreement with you. I’m not spending the next five years feeling like this.

I tried. And, even without the drug in my system, I’m still tired, dizzy and getting sick. I’ve been making an effort to go out for charity events and to socialize, but everyone is saying how I look “off,” “exhausted,” and like I’m fighting “a bad cold.”

Within a few weeks, though, those problems should abate.

So, after the fareston is out of my system, what’s left?

  • Three more IVs between now and September 14th;
  • Getting the medical port taken out; and
  • Celebrating with you!

We’re long overdue for a blog party, don’t you think?

The Breastern Front

I’m so close to being finished with treatment that I can taste it.

My last IV is scheduled for September 14, 2011. I can get my mediport (the small, implanted device through which I receive medications) removed later that week. And, then, I’m done.

DONE.

Hopefully.

For the past month, I’ve had this feeling that something was off. I hadn’t felt any lumps, and both of my oncologists said that my Clinical Breast Exams were clear. I wondered if I was experiencing some anxiety or depression, as happens with 30% of breast cancer survivors out of fear that the cancer will return. Yet, that’s not normally how I react to health issues.

The last time I had this feeling was spring 2010 when I thought I had cancer. (And, we all know how that turned out.)

I haven’t written or told anyone that I sensed that there was a problem in Tata-ville because it just comes off as unnecessarily negative. I knew that I had a mammogram scheduled so I tried to remind myself that I didn’t need to stress about a concern that didn’t exist!

Yesterday, I had my mammogram. The technician took four films of my two breasts, and then I was sent to a small waiting room. (One of the many reasons I love Sibley Hospital is that they give you the results before you leave the Center. Most places send you home, and then you receive a letter or call to let you know whether the films look good or there’s an area of concern.)

The first woman in the waiting room received notification that all was quiet on the breastern front. She was free to go. One of the technicians then opened the door and signaled for me to come back inside.

Me [smiling with a slight laugh]: No! I know what that means!

Tech: You’re fine.

Me: I’m fine then?

Tech: Well, the doctor just wants more films.

Me: Exactly. I want to go out the ‘Exit’ door. Not in for more! [We laugh.]

In total, I was brought back into the mammography room four separate times so that my left breast could be photographed eight different ways.

My left breast.

For those of you who don’t remember, I had cancer in my right breast. If anything is abnormal in my left breast, this would be deemed an unrelated problem to what I’ve gone through over the past 13 months.

When the doctor finally came out to speak with me, she said:

You have enough calcifications in there to feed a small army. [We laugh.] Wait…is it okay that I said that?

Me: Definitely. I know that there’s a lot of mass there.

Doctor: Well, I can see an area of abnormal calcifications in the left breast that wasn’t there last year. I don’t want to put you through anything if it can be avoided, but I think that we should do a biopsy.

Me: I figured after the second time that I was brought back.

80% of all biopsies are benign or non-cancerous. Over the years, I’ve had 11 biopsies and only two of them came back positive. This is probably nothing.

I’m not sad or mad, but I feel numb.

I don’t want to deal with this again.

I want to be planning my party to celebrate the end of treatment, not contemplating:

What if?

I’m tired of my breasts looking like a patchwork quilt.

I want life to go back to normal.

My biopsy is scheduled for Monday, and I should have results a week from today.

It’s going to be benign. It’s going to be benign. It better fucking be benign.