Healthy Michele

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The wall that separates healthy Michele from sick Michele must certainly be infinitesimal. It seems like only seconds ago, my wife and I were driving to the store complaining about our 1999 VW Jetta and lamenting about our financial woes.

She wore a chestnut colored stitched wool blazer and her hair spilled down the front of it like a frozen amber waterfall. There she was, squinting her eyes from the sun, determined to make a point while the day illuminated her porcelain finish seemingly from the inside out. All was fine that day, coffee was shared, laughter was had and feelings were hurt. She was healthy and by all the standards of marriage we were happy.

Today we find ourselves in an earnest struggle but not against cancer, not AGAINST anything really. We try not to waste our energy on such things. The struggle is for normalcy. It’s for Michele’s appetite and strength to return, for her body to heal and for her mind to relax. We can pray for those things and we do. We can think good thoughts and we do that too.

Cancer didn’t come here to take my wife away or to frighten my family. Cancer doesn’t care how Michele and I feel, it just IS. It’s a weight on the family that is only made lighter when all of us lift together in unison. When one of us gets tired, the other one holds it up until we can resume again.  It’s really a thing of beauty to behold. As it turns out, we are almost exactly the same family we’ve always been with the only difference being that all that lifting seems to have made us stronger.

We have seen the challenge and begrudgingly accepted it because the only moment we have, is the one sitting right here in front of us. The line between today and yesterday, tomorrow and a hundred years from now is imperceptible. It’s the blink of an eye, a dazzling streak of lightning against a cobalt sky and then smoke. We are and always will be our moments, the good ones, the bad ones and everything in between, stitched together like Michele’s brown blazer.

I don’t want our stitches to be made of fear anger or regret, I don’t want to waste my time forecasting all the things that could happen or have happened all the while missing out on what IS happening. I am this moment now, scary and unpredictable but I don’t think it should change who I am or who my family and friends are. Michele could spend all of her days asking why she had to get cancer. She occasionally does ask the mirror or the television or her glass of ginger ale but when nobody answers back, she moves on, stitching her moments together because what else is there.

She is a superhero, more courageous than Christopher Columbus more dauntless than Evil Knievel. I have personally watched her brazenly go through procedures that would have made the Rock tap out. There have been tears too, plenty of them, there is uncertainty and endless questions that pile up like too many dirty dishes, but through it all we have each other, we always have.

We also have all of our amazing friends and extended family and their friends and even their families. We have generosity that flows to us from the mouths and hearts of  strangers in the form of comforting words, food, and insight. It’s amazing.

Before long, we will once again cross the threshold of this thin wall that separates us from our many yesterdays and life will return to normal. We will complain about our crappy Jetta, be aggravated over the price of gasoline, and Michele will be perfectly healthy.

Still we will have gained something, something precious, the ability to contrast the everyday inconveniences and aggravations against what this moment has shown us, a gift that is far greater than gold and a lesson so profound that it fills my heart with love as I write this.

There are terrible, scary things out there in the world, things that would make even the great and powerful Chuck Norris want to run and hide. Should this keep us from stealing a kiss from our beautiful wives or husbands? Should we not go to our kid’s graduation because there are questions that we can’t answer? Who knows how big our life’s blanket or blazer will be or how long we will be able to keep on stitching. I certainly don’t, but I intend to keep good company and enjoy it so long as I’m still holding crochet needles.

Hair, Luxurious Hair

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All the same, I tried to emotionally prepare myself to lose my hair. I also figured by doing that. It wouldn’t hit me so hard. After all, I’ve never been all that preoccupied with how I look. Sure, I’m like any Cuban-Brasilian, I do care. But…I don’t need to break out the Sunday finest to go to the grocery store.

My hair loss was insidious. It started shedding a week before my second treatment. It seemed a little more than normal but hey not too bad. A day before my second treatment, I started noticing some clearly defined thinning at my crown. But, it was still workable. Not too shabby. So why worry.

It was after the second treatment where it started falling out in droves. And it gets everywhere. As a woman, you think you shed like a Yeti as it is. But when you’re losing all your hair, it’s incredible how much hair there is. It probably would’ve made quite a number of squirrel nests. I wish I would’ve thought to hook up the squirrels in my neighborhood.

The good thing about my husband being a hairdresser is that he’s been able to cut and style my hair so that I could keep it as long as I could. But, the day finally came, over a month later where I couldn’t ignore it anymore. There was no amount of hair covering magic that was going to work.

So, we cut my hair Rachel Maddow short as Josh calls it. And, let my hair continue to fall. I couldn’t bring myself to shave it. The finality of it; it’s too much for me to deal with.

I still have more hair than Jason Voorhees had when he was a kid. Sooo, I guess that’s something. I also have two kick ass wigs. One is a half wig made from my hair and Vanessa’s.

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I wish I could rock the bald look proud. But, I’m not there. Seeing myself with hair, helps me see myself as I was. It helps me feel closer to when I was healthy.

Sometimes, when I wake up or when I walk by a mirror, I’ve forgotten and am taken back by my Darth Vader after his mask gets taken off look. Then I remember, man, what a bummer.

As annoyed as I could get with my Cuban-fro, my bangs that never behaved, my hair’s love of frizz, I miss my hair.

Second Opinion – MGH Wins

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After my experience at Dana-Farber, I started doing some research. I felt that the team at Dana-Farber was fantatstic. But, as a consummate researcher with journalistic training, I knew that I had to have a second opinion.

MGH was the second institution on my list. I work with a few breast cancer survivors at my job. I reached out to one of my co-workers knowing she had been treated at MGH and that she was also part of the program for women under 40 diagnosed with breast cancer.

I can’t say enough how helpful it is to talk with someone who has had the same experience. It didn’t hurt that she was able to reach out to the team she worked with.

As it so happened, rather quickly, I was able to meet with the breast surgeon Dr. Michelle Specht first. She’s amazing. She answered all my questions and has extensive experience with nipple sparing mastectomies. The type of surgery I will end up having is highly dependent on how my cancer responds to tumor. So, if having a mastectomy is on the table. I’d like to keep as much of boobs as possible. In the grand scheme of things, stuff like keeping your nipples doesn’t seem as big a deal as being alive. But, hey I’m attached to those suckers. Sooo, it’d be nice to keep them if it’s possible.

After my experience with Dr. Specht, I figured I’d be switching to MGH no matter what. The deal was totally sealed after meeting Dr. Steven Isakoff, my medical oncologist. I could tell he was tired and had had a long day. Despite this, he spent over an hour talking to Josh and I about my tumor, my prognosis, the types of treatment available. He didn’t sugarcoat anything and was able to give me a clear picture of what I was looking at. I was sold.

It doesn’t hurt that commuting to MGH is way easier for me. And the views of Beacon Hill from the Yawkey Building are incredible.

So there you have it. I picked MGH and I picked a recently approved regimen called TCHP. TCHP stands for Taxotere, Carboplatin, Herceptin and Pertuzumab. Depending on how I respond to treatment will determine my surgery. I’m hoping for a lumpectomy, a lot.

But, I have to wrap my head around the concept of mastectomy especially if it reduces my risk for a recurrence later down the line. Eh, I’ll think about that sucker later.

For now, I’m going to revel in the fact that I found my team. It’s flippin awesome.

Freezer Baby

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As if having breast cancer wasn’t a kick in the boob to start with, you’re forced to examine your life choices all at once. When you’re first diagnosed, you start struggling with that old chestnut which is mortality.

Then as a 34-year-old woman who hasn’t had kids yet. You have to deal with the fact that your fertility will be compromised by the treatments that are supposed to save your life.

In my situation, I always thought I had more time. For the last ten years, Josh and I have been helping raise his daughter Lily. She’s twelve now. We figured maybe in the next couple of years we could give her a brother or sister. We just needed to get our finances under control. We’re also of the mindset that helping raise one kid is hard enough. The older she is the easier it would be to not be overstretched and give her the attention she’s needed during the really important phases of her life. Our choices aren’t for everyone, but it felt right for us.

Now this whole cancer diagnosis, it made me feel like maybe I fucked up. Now, my choices are limited. So, in the middle of dealing with having cancer, we started the merry-go-round that is an IVF cycle before chemo.

To be honest, it felt weird like I was an imposter. Here I am starting an IVF cycle because I have cancer. Some of these couples in this waiting room have been struggling with infertility and dealt with the ups and downs of what that means. I felt like I was thrown into a process without having a clue of what I was getting myself into. And it was true. I had no idea; I was just preserving my ability to have a choice.

So, we started the 2x daily injections. I didn’t turn into a hormonal psycho so that was good for both me and Josh. I was given medication to make sure that my estrogen levels stayed low throughout the process. Since my tumor is estrogen and progesterone positive.

We both sucked it up and drove to the hospital at the butt crack of dawn for the vaginal ultrasounds and blood work. Not the type of fun I would expect so early in the morning. It was exhausting, but I guess not as bad considering we were hoping to do this once. I didn’t produce as many follicles as the doctor was expected. But, it wasn’t too bad. I had 8 follicles to work with.

After 11 days, it was finally go time. I was having my egg retrieval. That procedure involved twilight sedation. Being wheeled into the day surgery room, I’m not sure why but I was totally unprepared for the heavy-duty yellow and black stirrups. It looked like something out of Aliens or Prometheus. Stupid on my part, right. How else are they going to take these eggs out?

The procedure went well. The pain wasn’t that bad. I did have some issues with my blood pressure being low so that sucked. It meant spending a longer time recovering. But all in all, not that bad especially considering what a wimp I am. I don’t like needles or surgeries or any of that. I wasn’t meant to be a nurse or doctor and I’m OK with that.

While I was recovering from the sedation, we got the news that the doctors highly recommended doing a procedure called ICSI where the inject the sperm directly into the egg. They said it was the best course of action and considering my cancer diagnosis, the $2,000 procedure would more than likely be covered by insurance. Sounded reasonable, sure I was pretty drugged up at the time.

The next day, I woke up with tonsillitis. Lucky me, right. You can’t make this shit up. While at the MGH Urgent Care clinic, I learned that of only 5 eggs were retrieved. Of the 5 retrieved, only 3 were mature enough to be fertilized. Of those 3, only one egg was fertilized.

Considering all the work and everything we had gone through, it was a big letdown. One embryo. Just one. Damn!

So, it just goes to show you. Life never goes as planned. Not that I’m constantly expecting sunshine and lollipops, but I just figured dealing with cancer was hard enough. Then I’m thrown into the whole fertility circuit; it seemed like it should have gone a little better.

Josh, the absolute funny guy that he is and positive person. He’s decided that the nickname for this embryo is Neo. Because, despite all this shit, this embryo is the one.

First Opinion

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Well, the waiting was finally over. On November 22, 2013, I finally had my first appointment at Dana-Farber.

It wasn’t easy getting that appointment. It required a myriad of calls to insurance companies, the nurse manager at the health clinic, and Dana-Farber.

I wasn’t really sure what to expect. I knew I’d be meeting with the breast surgeon and the oncologist. I figured it’d be a couple of hours. I would learn exactly what was going on. The appointment was more of a whirlwind of meeting including the surgeon, oncologist, nurses, research coordinator, and genetic counselor. I learned a plethora of information but no real particulars since the pathology on my biopsy samples were not complete and genetic testing was needed to determine treatment.

Before the appointment, still in some denial, I was in the hoping for the best mode. I figured I would definitely have to have a lumpectomy and maybe, some radiation. It came as a shock to me that my tumor was considered too large to be removed via lumpectomy.

Instead, choice #1 was to start with chemo to see if the tumor shrinks enough for a lumpectomy, if not, mastectomy it is followed by radiation and lastly, hormone therapy. Choice #2 was to start with a mastectomy, then chemo followed by radiation and top it off with hormone therapy.

I wouldn’t know about the exact type of chemo until the pathology of my biopsy sample and the BRCA 1, BRCA2 genetic testing were complete. The genetic testing was an extra fun waiting game added on. If the test is positive, your risk for cancer in the other, unaffected breast goes way up along with your risk for ovarian cancer. It means that you have to make a decision on whether to do a bilateral mastectomy, followed by another whooper of a decision on whether to have an oophorectomy before you turn 40. Talk about a shit sandwich.

So after an incredibly long appointment, you just realize how much getting cancer sucks. It’s great that we live in a world and a country in which you have options. This is great because you get to do the whole staying alive bit.

But, you soon realize cancer treatment is really a matter of choosing the least shitty option. Because your life and your body as you knew it is not going to be the same. Neither are you.

I decided to go the chemo first route. I figured it would be nice to see if lumpectomy could still be an option.

So, I would have to wait, you got it, another two weeks. At the end of the two weeks, I would have to do the scans and tests to make sure the cancer hasn’t spread past my lymph nodes. The day after those tests I would find out the results of the genetic test and what type of chemo I would be getting.

In the meantime, because chemo does a number on your ovaries and I haven’t had children yet. The next step is meeting with a infertility specialist. Hooray for more appointments.

Waiting in Line

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You would think after being diagnosed with breast cancer. You would be immediately thrown into a whirlwind of appointments. Maybe picture a super-dramatic meeting with a doctor whose awe-inspiring words include “we’re going to save your life damn it.” You know something like the spanish telenovelas I grew up watching. Noppppe. That didn’t happen in my case at all.

Instead, I felt like I was waiting in a two week line for a kiddie roller coaster. A long line for a ride you don’t want to be on.

Even though, at that point, I knew I had breast cancer. I had no other information. I didn’t know what stage or how bad it was. I tried to refrain from using the information trove of the Internet. I figured the only thing it was going to do was scare the shit out of me. It’s usually you have a cold or cancer. Since I already had cancer, I figured the only other thing I’d found out is that I’m dead. Sooo yeah, I didn’t want to spend two weeks shitting a brick.

What I found interesting is that in those two weeks, despite not knowing what’s going on or having any treatment underway, it was easy to fall back into a false sense of what life before cancer was like.

Even in those two weeks, the time I had to spend telling people I had cancer; for the folks I did tell, I felt like I was dissociating myself from the self that has cancer. It’s difficult telling anyone you have cancer. It makes it more real. It bums the other person out. It also feels like hey, everyone, look at me. I want attention; I have cancer. Followed by the holy crap, I have cancer. What the hell. I can’t believe this. It’s a merry-go-round of the stages of grief.

As much as not knowing or being in treatment isn’t great, those two weeks didn’t suck as much as they could have. The seemingly endless doctor appointments, tests and scans were about to start.

Dx-Day

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Josh and I after a long ass climb to the summit of Stone Mountain in Georgia.

Ah, Tuesday, November 12, 2013, that was the day I officially found out I had breast cancer. Finding out you have cancer sucks. It also sucks extra hard when you’re at a conference that you’ve been REALLY looking forward to. It’s hard to be super dorky and enjoy the Confab Conference when you’re struggling with shit like “there’s malignant cells in your lymph node. But, we don’t have any additional information about stage.”

This whole thing started a year ago. I found a lump in my left breast, also known as Lefty. I made an appointment to see my PCP for a physical, it was December 2012. I mentioned the lump, and she examined it. There was nothing to worry about. So, I didn’t. It would hurt periodically, but eh, I figured it was normal. After all, a doctor had taken a look at it. They do all those years of medical school.

Fast forward to October 2013. I was sick with a cold. I started having more pain in Lefty and having a burn sensation across my chest into my armpit. I also noticed a lump in my armpit. I figured the lump in my armpit had to do with being sick. After all, I had a cold. I remember when I was a kid that would happen sometimes. Having asthma and a cold, to play it safe, I made another appointment.

Little did I know, that appointment lead to a diagnostic mammogram and ultrasound. In the waiting room, before the diagnostic tests; I was in denial. I was looking forward to going to that conference. I figured it couldn’t be that bad. The lump in my breast was maybe a cyst or at worst, a benign tumor. The lymph node in my armpit had to do with being sick.

I tried to keep a positive outlook. Even though, there was a woman in the waiting room crying. I looked at her and felt bad. I thought, wow it must suck to be her. I wondered why she was freaking out. This is just the testing part. None of the pieces were clicking. Yup, I must be that stupid or woefully ignorant.

Looking back, it just seems like hey I’m too young. After all, I’m 34. I didn’t have any of the signs you see on those breast cancer awareness pamphlets; I have no known family history.

After the ultrasound, the radiologist said that it was suspicious and I would need a biopsy. They could do the biopsy right now. After that, the whole situation was surreal.

Thank you modern technology. I could find out that shit was about to get real for me via ultrasound and use google hangouts to talk in real time with my sister, Vanessa and my husband, Josh. I let them know it’s not looking good, I probably have cancer; they want to do a biopsy immediately.

Of course, technicians can’t officially tell you that you have cancer. Sure, they went to school to be able to tell the difference. But…they’re not doctors. They just do the imaging or take the samples.

But, they didn’t have to say anything; I had a pretty good idea. You know it’s bad when people are already acting like you have cancer. Very sweet people, doing the best they can. It’s impossible to know bad news like that and act normal. I did get some consolation juice and cookies. So, hey, it wasn’t all bad.

For the next few days. I knew but I didn’t. I packed, hopped on a place to Atlanta and tried to act and live as normal as possible. Josh and I enjoyed the Southern hospitality and continental buffets. We decided to visit Stone Mountain Park.  It  had some touristy parts. But, they have lovely park grounds, and we really enjoyed it. There’s also a freaking mountain smack dab in the middle of the park.

We decided to climbing the one mile up Stone Mountain which is 1,686 feet above sea level. Sure, one mile sounds easy enough. Nope, that sucker seems easier but it is all uphill. Sooo.

While walking/hiking, Josh and I talked about the impending diagnosis. I can still appreciate the cheesiness of us climbing a literal mountain while facing the prospect of dealing with breast cancer.