It's been two weeks since I had a double mastectomy, and I'm thankfully continuing to recoup well. The pain is minimal enough that I was able to stop pain medications last week. I unfortunately still have two drains coming out of my armpits, and they are uncomfortable and limiting. I also find myself getting out of breath often and losing focus easily. I'm hoping to get the last two drains out on Monday and receive clearance to drive and walk my dog by Memorial Day. I feel very glad that my doctors and I decided upon this course of treatment, and I'm incredibly grateful that I'm able to do as much as I can. Progress, not perfection, right?

During a recent interview with Breast Cancer Answers, I was asked about my thoughts on dealing with an unsupportive partner during a health crisis like breast cancer. Here's what I had to say:

Have you or a loved one had to deal with this? What thoughts do you have?

Thank you to everyone for the outpouring of support over the past week!!!

I'm recouping well from my double mastectomies, and I'm thrilled to report that the surgery was infinitely easier on my body than chemotherapy. (Excuse me while I knock on wood in the hopes that my recuperation will continue as such.)

Earlier this month, I did a series of videos for BreastCancerAnswers.com. This video addresses how to process your emotions after being diagnosed with an illness such as breast cancer.

Do you have any advice to share with others?

As the youngest in my class in 5th grade, I watched a few of my friends get their first bras. One afternoon, I stuffed tissues down my shirt and giggled with my friends about what I would look like with boobs.

In 7th grade, I missed over a month of school due to health issues. When I returned to a reduced schedule, I was 5’3” and 75 pounds.

In 9th grade, I started filling out. I went from wearing a training bra to a C-cup seemingly overnight. I wasn't self-conscious about my curves, but I didn't fit in socially either.

When I moved overseas in my sophomore year in high school, I vowed to reinvent myself. My braces were off, my hair was longer, and I began to embrace my body. I wanted attention from the boys and invites to all the parties, and that’s exactly what I got!

Through that time, I began to associate my boobs and long hair with my power and sexuality. As my breast got bigger and bigger and my hair got longer and longer, that increased exponentially.

I wear between a 34F and a 34G bra right now. I am very attached to my tits. (If I could write that sentence 500 times in all capitals and bold letters, it still wouldn’t do my attachment justice.)

When I come to after surgery on April 25th, I will be an A-cup for the first time in 26 years.

I an angry at cancer.

I'm disappointed that I’m not eligible for immediate reconstruction.

I am sad that I have to go through this all without my mom. (She passed away from cancer in 1997.)

I am heartbroken that through chemotherapy and this upcoming surgery, I will have lost the physical attributes that I’m most attached to. My hair and my tits were my signatures. Cancer will have taken both of them from me.

I’m slightly concerned that even after mastectomies, I will still have a 5% chance of developing breast cancer in the left breast and 12% in the right breast.

And, I’m very disappointed that so much misinformation is out there for women wanting to learn about the process.

Do I have faith that I will get through this experience? Of course.

Will I live my life as though cancer is never returning? Yes.

Do I take comfort in making this experience about more than just me? Definitely.

Do I stress less, cry less and put up with less crap than I did before cancer? Sure.

Do I laugh less than I did before cancer? Yes…unfortunately.

Do I know that my worth and my identity are more than the sum of my physical parts? Deep down, I do.

Do I look forward to the day when this experience is a distant memory? Every. Single. Day.

What are you attached to?
 

“So, Doctor, how long should I expect to recoup after my mastectomies?”

“One month.”

I stare at my breast surgeon and give a slight nod of my head with a disconnected expression in my eyes.

“You should prepare to just putter around the house for a month and only leave to see the doctor.”

“How much help will I need at home?”

“I would say 24-hour nursing care for two to three days, and then eight-hour nursing care for two weeks or so.”

“This sucks,” I say without eloquence or pretense as I shake my head back and forth.

So, barring any unforeseen complications, what’s the timeline for my upcoming surgeries?

April 25th: Double Mastectomies

Until the surgery, my doctor won’t know if there’s enough viable skin on my right breast to create the new mound. (Four lumpectomies and a month of radiation have taken their toll.) If there is enough viable skin, then I’ll be released in one day. If not, and the surgeon is required to take muscle and tissue from my upper back, then I’ll stay in the hospital for three or four nights.

I’ll be sent home with two to six drains and a lot of pain medications. I’ll also leave the hospital with expanders inside my chest. As Johns Hopkins' site explains, “a breast tissue expander is an inflatable breast implant designed to stretch the skin and muscle to make room for a future, more permanent implant.”

The media tends to highlight the stories from women who are eligible for immediate reconstruction. I think it's easier for us to put our heads around that procedure sociologically and psychologically. However, the overwhelming majority of breast cancer patients who have needed or will need radiation are not eligible for this procedure. Immediate reconstruction also increases the risk of infection, and over half of the women who choose this option end up getting a second surgery at a later juncture.

May 9th: Pump ‘Em Up

Hopefully, the last of the drains will be removed when I visit my surgeon for the two-week follow-up. At that point, the doctor will inject saline into the expanders.

I’ll see the surgeon weekly for the next four to six weeks so she can expand my breasts to the desired size. (I'm assuming I'll end up with a DD cup, but we'll see.) I might need to post photos in a bathing suit top of the expansion so you all can see how they plump up!

Late June: Rest!

After the expanders are at the desired size, we wait for four to six weeks for the tissue to settle.

Early August: Implants Time!

I’ll have surgery to replace the expanders with traditional breast implants.

I’ll be in physical therapy to increase my mobility and upper body strength in the summer and fall. Once my breasts have healed, I’ll have my nipples reconstructed.

This sucks. But, like countless women before me and after me, I’ll get through it. I just keep reminding myself that this is worth it to reduce my risk of recurrence.

I’m scared, and I’m doing it anyway.

That was my response, when my friend, Lauree Ostrofsky, asked me how I’m feeling about my upcoming surgery. I didn’t hesitate to answer her with one of her trademarked catchphrases as a life coach and motivational speaker with Simply Leap. Lauree urges others to acknowledge their fears since that makes it easier for people to deal with them.

So, with that in mind, what am I scared of when it comes to my mastectomies on April 25th?

1. I’m scared of the pain. From mastectomies through reconstruction and physical therapy, this will be a minimum of a six-month process.
2. I’m scared of developing an infection or having a reaction. I’ve been told by many a doctor that my body is a medical mystery. I don’t react to medicines and surgeries like the average patient. On a few occasions, that’s meant that I’ve recouped faster than others. More often than not, though, I’ve experienced rare reactions and complications.
3. I’m scared of losing more friends. Yes, I’ve gained a lot of friends through my diagnosis and treatment, but I’ve also lost several old friends or seen friends’ true colors. I accept that not everyone is good in a health crisis, but prior to chemotherapy, I never imagined that four old and loyal friends would be cruel or unsupportive.
4. I’m scared of this affecting my relationship. We’re in a good place that’s drama-free. This surgery is a significant occurrence, especially for a couple that hasn’t dated for that long.
5. Most importantly, I’m scared that I will do this, and I will still develop cancer again. Mastectomies greatly reduce my risk of recurrence, but they don’t eliminate them. There’s still a 5% chance of getting cancer in my left breast, and a 12% chance in my right breast. As I’ve told my doctors, if I develop cancer again before I’ve adopted a child, I will not do chemotherapy again. (Yes, you read that correctly. I have fears, but death is not among them.)

For the next six weeks, I will work hard to face my fears and shower myself with reminders as to why I’m doing this:

1. My chances of recurrence are in the 30% range right now.
2. I wasn’t able to tolerate the recommended hormonal therapy treatment.
3. I’ve had 13 biopsies in 12 years, and I don’t want more.
4. The doctors believe my mom and I have a genetic marker for breast cancer that has yet to be discovered.
5. My other health conditions prohibit me from participating in vaccine studies.
6. This is the one thing left that I haven’t tried. There are so many unknowns in life, but that is known.
7. My entire medical team agrees that this is the best course of action.
8. There is so much more I want to do with my life. I want to be as healthy as I can be.

I’m scared, and I’m doing this anyway.

What are you scared of and doing anyway? What happens when you face your fears?

There’s a lot of misinformation about breast surgeons, mastectomies and reconstruction out there. Let’s separate some of the facts from fiction!

True or False:

1. You can’t see a breast surgeon unless you have breast cancer.
2. A majority of women only require one surgery for mastectomies and reconstruction.
3. Women can get mastectomies without having breast cancer and insurance will cover it.
4. If a woman gets mastectomies, her chance of developing breast cancer is less than 1%.
5. After mastectomies, a woman will have no sensation in her breasts.

Answers:

1. You can’t see a breast surgeon unless you have breast cancer.

FALSE. You can see a breast surgeon if you’ve found a lump, require a more thorough clinical breast exam than your gynecologist provides, or have a family history of breast cancer. I’ve been working with a breast surgeon since I was 26, even though I wasn’t diagnosed with cancer until the age of 37.

        2. A majority of women only require one surgery for mastectomies and reconstruction.

FALSE. Most require at least two surgeries. Doctors do not advise women who have had or will have radiation to obtain immediate reconstruction since radiation affects the strength of and blood flow through the skin and the tissue. Immediate reconstruction also increases the risk of infection and is more traumatic to the body. A majority of women who are eligible for immediate reconstruction end up getting a second surgery for aesthetics.

Women who are not eligible for immediate reconstruction can choose to stick with the results post-mastectomy or have tissue expanders placed on top of their chest wall. The expanders help gradually stretch the skin out to handle a subsequent surgery during which the expanders will be replaced with permanent implants.

        3. Woman can get mastectomies without having breast cancer and insurance will cover it.

TRUE. Women who test positive for BRCA-1 and BRCA-2 genes have a much higher risk of developing breast and ovarian cancer. These women can choose to be frequently monitored via mammograms and breast MRIs. Or, they can choose to obtain preventative mastectomies. Women who have also had breast cancer may choose to get mastectomies after they are cancer-free. Insurance covers mastectomies and reconstruction since companies know that these are not surgeries that women do precipitously.

        4. If a woman gets mastectomies, her chance of developing breast cancer is less than 1%.

FALSE. If a woman has never been diagnosed with cancer, mastectomies can bring her risk of developing breast cancer down to approximately 5%. If a breast cancer survivor gets mastectomies after she has completed treatment and is cancer-free, her risk of developing breast cancer again is between 10-15%.

        5. After mastectomies, a woman will lose sensation in her breasts.

TRUE. The nipples are removed during mastectomies, and with that, the nerves and sensation in that erogenous zone will also be gone. After a patient has recovered from the surgeries, she can elect to have nipples tattoed or reconstructed.

So, readers, how did you do on the quiz? Any questions?

* Lawyer-turned-Blogger Disclaimer: I am a breast cancer survivor and advocate, but I’m not a health care professional. I’m committed to conveying accurate health information, but please check with your doctor if you have any specific questions or health concerns.

I’m cancer-free.

And, I’m so thankful for that.

But, that’s not the end of the story for me.

I haven’t wanted to celebrate because I knew what was likely on the horizon. I haven’t been able to fully exhale since I knew that mastectomies and reconstruction were looming. They’re like this large, nebulous cloud overhead (or maybe two large, nebulous clouds).

My mastectomies are scheduled for April 25th. This is real. This is happening.

I had planned to schedule the mastectomies for the summer, but I shifted around my schedule to allow the surgery to happen sooner. I'm much calmer since I no longer need to wait five months.

It’s an interesting part of the journey to observe people’s confusion and reactions at the fact that being cancer-free doesn’t mean being done with cancer. Kind and well-intentioned friends and acquaintances want me to be healthy; they want my life back to normal. I get that, and I want that, too. But, that doesn’t mean that it’s a simple road from here to there.

On the chance that you’re wondering why I’m getting mastectomies now, here are the reasons:

1. I’m 38 years old, and I’ve had 13 breast biopsies and four lumpectomies. My breasts are fibrocystic and dense with a lot of calcifications. That’s why I’ve had so many biopsies, and it’s expected that I’d continue to have biopsies every year if I did not have the surgeries;

2. I was unable to tolerate hormonal therapies, which have been shown to significantly reduce a woman’s risk of recurrence. (When my doctors recommended lumpectomies in 2010, they assumed that I would be able to tolerate this class of medications);

3. I was diagnosed at 37, which means that I have a higher rate of recurrence than older women;

4. Because of my health history, I’m ineligible to participate in any studies for new breast cancer drugs or vaccines; and

5. The thought is that my mom and I have a breast cancer gene that has yet to be discovered.

A few hours after I scheduled the surgeries, a friend sent me the following quote by Vaclav Havel:

Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out.

I don’t believe that my breasts are killing me, and I could have the surgery and still get breast cancer again. But, I have a significantly higher chance of getting breast cancer again if I don’t get mastectomies. To me, this game of life is a numbers game. I’m playing my hand according to the probabilities.

In the super, amazing, epic news that’s actually epic column, I’m cancer-free! To say I feel thankful and grateful would be an understatement. After the doctor left the examination room, I put on my clothes and cried many happy tears.

It’s interesting that as elated as I am, I’m not in a celebratory mood. That might stem from the fact that I don’t look in the mirror and like what I see post-chemotherapy. Or, and more likely, I know – with 99% certainty – that my journey isn’t over.

If I take the doctor’s news and do nothing medically, I have a 30% chance of my cancer returning within four years. Typically, when cancer returns that quickly, it spreads beyond the area of original diagnosis. After those four years, I’d have a higher chance than the average woman of having breast cancer again. The genetics specialist believes that my mom and I have a gene that has yet to be discovered. (There is much talk of a Breast Cancer Gene, but there isn’t just one single gene that causes breast cancer.) And, I’ll need more biopsies based on the fact that I have fibrocystic breasts and many abnormal calcifications. In the past 12 years, I’ve had 13 biopsies. Eight of those were in the past four years.

When my breast surgeon recommended a lumpectomy over a mastectomy after my diagnosis, there was the assumption that I could tolerate hormonal medications after treatment. As it turns out, I can’t.

So, here I am…cancer-free…going to consultations about mastectomies and reconstruction. Tears of sadness and fear have replaced my happy tears.

Things I learned after meeting with the reconstructive surgeon:

1. 70% of women who get mastectomies with immediate reconstruction end up going in for a second corrective surgery. Out of the remaining 30%, the majority of women override their doctors’ recommendations to have a second surgery, instead choosing to live with noticeably disproportionate breasts.

2. The surgeon wouldn’t recommend me getting immediate reconstruction for several reasons:

a. I’ve had four lumpectomies over the years on my right breast alone. Scars impede blood flow to the skin. Immediate reconstruction would stretch the weak skin and jeopardize blood flood throughout.

b. I couldn’t get implants larger than a ‘C’ cup because the skin wouldn't be strong enough to support more than that. I haven’t been a ‘C’ cup since I was a teenager, and given my current size, I wouldn’t feel comfortable with that.

c. There would be an increased risk of infection for any patient, especially those with other health issues like me.

3. I will need more surgeries and the process will take much longer than expected. The general timeline is as follows:

a. Mastectomies – leave from the hospital with drains that I need to empty and clean myself and keep in place for two weeks. [Insert wincing expression here.]

b. Expanders – I will have expanders put inside my breasts that will help stretch the skin out to my desired size. Each week, I will go into the surgeon’s office, and she will inject saline into each breast to expand them. I will be awake for this. [Insert more wincing expressions here.] She estimates that it will take four-six weeks for this process. I'm larger than a DD now, but I feel like I'll be saying, "when," by that point.

c. Wait a minimum of four to six weeks for everything to settle.

d. Have another surgery to put the permanent implants inside.

e. And, once the scars have healed (in a relative sense), have surgery or an appointment with a tattoo artist to have nipples put on.

Because of my teaching responsibilities, I won’t be getting the initial surgery until May or June, and I won’t be getting the implants put in until December. The psychic saw more surgeries in my future, but said to view them as rebuilding and strengthening. I like that in theory, but I'm going to need some time to wrap my head around that.

I’ve said before that being cancer-free doesn’t mean being done with cancer. Last week exemplified that. The thought of the expanders evokes a visceral response from me. The thought of losing my big naturals saddens me. The thought of really being done with this in a year calms me. And, when those buoyant DDs are inside me, I’ll sigh with a fair amount of relief that I have only a 5% chance of getting breast cancer in the left breast and a 12% chance in the right breast…for the rest of my life.