Matters of the Heart

People call me brave and strong and inspirational. Generally speaking, I don't believe these compliments. I am simply trying my best to live a normal life in the face of great adversity, and there are tens of thousands of other patients and caregivers doing the exact same thing every day all around the world. There are hundreds of my blog readers who are just as brave, strong, and inspirational - they simply choose to battle quietly.

Furthermore, I know that all of you who've not been touched by tragedy, when challenged, would behave much the same as I have done.

That said, this week I do feel awfully brave. I am proud of myself. This week I feel like a grown up. I am wearing my big girl pants.

It all started Labor Day weekend. I was having some girlfriends over for brunch and, like any hostess, was rushing around trying to get things in order. Everything had to be perfect, and I was down to the wire. I was rushing around hiding dog toys, putting away laundry, finishing a quiche, arranging flowers. Running these last minute errands, I was running up and down the stairs a lot, and I noticed I had to sit down and catch my breath after each trip upstairs. I felt weak and short of breath. I thought I was perhaps coming down with a flu.

Over the course of the next several weeks, the breathlessness got worse. Lying in bed at night, I would cough uncontrollably. Coughing would wake me up in the middle of the night and I could hear wheezing in my throat. I sounded like I was 90 years old. My dog looked at me with concern and sniffed my face after my coughing fits. Something was wrong.

Monday, September 17th I was due for my third infusion of this new drug cocktail - Herceptin, Docetaxol, and Pertuzumab, and we were getting wonderful news so far. This drug cocktail was working! Over the course of several weeks my tumor markers had fallen from 1,133 to 387 and from 8,813 to 2,762! I was optimistic and encouraged. I was losing my hair, I was coughing and wheezing and feeling sick, but all of this was totally worth it if it meant I was winning!

I expressed concern about my breathlessness to my doctor in the hopes that she would have some prescription medication she could give me to quell the cough. I had tried Vick's Vapo Rub, I had stood in a steaming shower and had taken eucalyptus baths. I was thinking of investing in a humidifier. Nothing had worked so far.

The cough that I thought was not a big deal, apparently could be a big deal, because the doctor got very serious, cancelled my Monday infusion, and booked me for a series of tests on my heart and lungs instead.
The next morning at 7am, I showed up for an Echo cardiogram (read ultrasound) of my heart. I have had Echos before and always passed with flying colors. I saw this as a precaution and was looking forward to receiving my miracle drug on Wednesday after passing this silly test. I drove myself to the appointment. I don't even think I told Big Man or mom about the appointment because I simply assumed it was a precaution. Boy, was I wrong.

Two hours later, I was in an ambulance being rushed to Brigham and Women's Hospital for emergency heart surgery.

The Echo technician told me I had fluid around my heart, also called a pericardial effusion. The fluid was pressing on my heart, making it difficult for my heart to beat, which explained my breathlessness and general fatigue. I was in a daze, more concerned about what was going to happen to my car that had been left at the Echo location than what was going on in my chest. I was strapped onto a guerney, and reluctantly asked the EMT to pass me my cell phone. I said to the EMT, "I suppose I should call my husband and my mom, huh? This pericardial whatever is going to take probably a few hours to handle, right?"

He looked at me like I had three heads and responded, "Yeah it's going to take at least all day today, ma'am."

"Really, all day? Are you sure? Because I really don't want to have to call in sick to work? I had a really full day."

The EMT looked around the back of the ambulance in the hopes of finding some help dealing with the insane cardiac patient. "Ma'am, you are being rushed to the hospital for emergency heart surgery. I think you need to take a day off work. You should probably call....everyone."

Emergency heart surgery? What in the world? I'm 29! I feel fine, I swear!

It wasn't until I started making phone calls that reality set in. As I spoke to Big Man and said, "You need to come to the Brigham. I have fluid around my heart." That was the moment when my voice cracked and I broke down. The EMT looked relieved.

Big Man fled from work, his boss agreed to dog sit (we love you, Bee!), my mom was booked on the next flight from Baltimore to Boston.

Just when we thought progress was being made in my fight against cancer, it turns out this sneaky beast had gotten right to the heart of the matter. My cancer has metastasized to my heart. Even though the drug cocktail was working on my liver so beautifully, it is possible for a drug to work on one organ and not on another. Doctors called this a "mixed response."I had been afraid of cancer for years, but never before had the fear struck so deeply, and felt so serious. I had cancer in my heart? I didn't even know that was possible!? My heart, the very thing that makes me this small, passionate, headstrong young lady. My heart, that beats so strongly when I get hugs from my husband. My heart that feels like its going to burst when I watch my niece Annabelle waking up from a nap. My heart....the door to my soul, my very essence, that thing that we just assume will always keep beating. My heart has cancer. Wow.

The doctors put a drain into my pericardium - the thin lining around my heart. They drained out 600 millileters of fluid. The young residents were in awe of me, "how were you doing yardwork and taking the dog for a walk with 600 mL around your heart? I'm surprised your still standing! Man, 600mL." The cardiac surgeons were more professional, "You had a 'rather large' pericardial effusion."

To make matters worse, during my heart surgery and the battery of tests before and after surgery, they saw a build up of fluid in the sac around my lungs - that would also need to be drained.

I had two surgeries and spent more than a week inpatient in the hospital. The whole week was a complete blur. I went into the hospital a "relatively" healthy 29 year old who had just spent Labor Day weekend sitting poolside in a bikini. I left the hospital with a clear plastic tube hanging from the right side of my abdomen. A permanent drain that was inserted into the lining of my lungs. It will clear out any more fluid from my heart and lungs that the cancer deposits there. I suppose I should load up on one-piece suits and finally part with those midriff baring cut-off t-shirts I have held onto since college!

I also left the hospital with a new appreciation for how I do NOT want to spend my last few months of life. I want to fight this cancer with all that I have. I want to exhaust every possible clinical trial and FDA approved drug. As long as I can stay in fighting form, I will fight with all the might my impaired little heart can muster, but I do not want to end up saying goodbye to my family from a hospital room, in a strange itchy bed with lots of beeping machines, fluorescent lighting, and no view from the window to speak of, where the only company is coming from Dr. Phil on the small tv screen in the corner. No, I want to say goodbye in the comfort of my own home, the home that I have fought so long and so hard to establish with my Big Man. My home that is full of my smells and my love and my sweat and tears. There is really no place like home.

I am home now and am so happy and content. You all aren't going to be getting rid of me just yet. I am getting comfortable with this Pleurx drain. I can empty it myself now and it doesn't hurt as much as when they first inserted it. More importantly, now that I am actively draining this fluid, I no longer get breathless or cough uncontrollably. I am starting to cook and clean and play with the dog as before. Also, oddly enough, even though my heart and lungs almost gave out on me  last week, my liver is functioning beautifully! I have been accepted into a clinical trial! We just started this week and I'm feeling really optimistic about the sounds of these drugs. More to come on that front as we learn more in the coming weeks, but just know that I am still fighting.

Next weekend is the 2012 Susan G. Komen Washington DC 3-Day. With the support of an incredible organization called Check Your Boobies, a non-profit organization I started working with last year that educates women about breast health in a frank, fun, and fear-free manner, I have reached my $2,300 fundraising goal! My mom, my younger brother, my uncle and cousins, my dear friends from Concord, MA, from Baltimore, MD, and from Florida, we are all walking together on team Million Dollar Babies, and come hell, high water, or even heart surgery, I will be walking with them! I leave this Wednesday evening for the DC walk. I get tired really easily as I am still recovering from the surgery, so I'll probably only walk a little bit each day, but I plan on crossing the starting line Friday and crossing the finish line every single afternoon, hand in hand with my family and friends. I'm still here, still fighting, still loving, laughing, and, above all, I am still living... fully.... with cancer.

As October begins, a new chapter in my cancer journey has also begun. Yet again I am humbled by this disease. Yet again, my journey has gotten even harder, and yet I've come through it and found myself back at home surrounded by love and comfort and I'm feeling good when I wake up in the morning. I don't know how or when this story will end, for a minute there in September I thought my story was over, but because of Pleaurx catheters and good doctors and clinical trials that all of you have made possible, I'm still hopeful. I still have a little more time. I'm not giving up.

I hope none of you give up either. If I can continue to cook dinner, work full time, and strive for a personal best on the Susan G. Komen 3-Day, surely each of you can do something with your day or with this month, or with the rest of this year that will positively impact the fight against cancer.

I can't wait to update you at the end of this month with good clinical trial news, because I know my heart is strong enough to fight the cancer that has taken up residence there. 

An Ode to My Mother

I have been MIA for the past few weeks, recovering. I had my swap surgery February 9th and started my Xeloda pills last week. My new "Girls" are looking pretty good, but it's hard to get excited about them when they are black and blue. Luckily, the new Victoria's Secret catalog came in the mail the very same day as my surgery. I treated myself to three new bikinis as motivation for falling in love with this new body.

On the chemo front of things, the Xeloda treatment is going well. I'm pleasantly surprised. I haven't had to call my doctor in a panic or get rushed to the hospital. So far so good, although I guess my previous medical dramas have set the bar kind of low!

I am definitely fatigued, but I can learn to fit fatigue into my lifestyle. There's nothing wrong with an 8pm bedtime; I've got nothing to prove. I also need to learn to live with a constant stomach flu. Most women my age have to remember to bring a change of shoes in their purse (heels for the office or the bar, flats or flip flops for getting around town) or they have a purse stuffed with technology: a work blackberry, a personal cell phone, a digital camera, an IPod, or the young mom carries a diaper bag stuffed with toys, snacks, pacifiers, wipes, and, of course, diapers. Not me. I can't leave home without making sure my Immodium is in my purse. I root through my purse at dinner to pull out, not lipstick or a mint, but those Xeloda pills that must be taken with a meal. I am not turning into my mother, like some women my age. I skipped that stage completely. I'm turning into my grandmother!

That said, my face may be suffering from the Xeloda even more than my tummy. The hives have retreated  everywhere but from my face. I have the face of a 14 year old now. This is not my face. I turned to the Big Man the other day as we were brushing our teeth and pointed in the mirror saying, "Who the Hell is that woman in the mirror? That is not the woman you married!" He, of course, told me I was beautiful, but later that evening he advised me against ordering dessert because the chocolate might aggravate my "rash." Don't be fooled, blog friends, the Big Man is not perfect!

I suppose this is typical of my cancer journey. I check off one item on the "Cancer To- Do List" and another To Do pops right up. Just when I  had finally gotten over the major self-esteem issue that was learning to love my post-mastectomy chest, I now have to learn to love my chemo-induced acne and nausea.

Like the Victoria's Secret shopping spree, I am now pondering a trip to a make-up artist. Do any of you Boston-area readers have a recommendation for where to go? I get nervous about the stands in the mall. I'm not looking to get "hot" for a night out at da club. I just want to look fresh faced for a trip to, I dunno, the grocery store.

So, I apologize for my absence, but I've been a little under the weather and also I haven't been too full of self-confidence. Blogging requires a bit of chutzpah. I'm letting it all hang out here on this website. I have to be in the right frame of mind to blog. I might wake up ready to take on the world, but when I look in the mirror these days, that attitude quickly disappears as my cancer-acne stares back at me.

Which brings me to my topic for today. I want to take this opportunity to praise my Mommy. She is truly the only person in the world who can help me at a low self-esteem moment like this one. My swap surgery was surgery number 8. In 6 years, I've had 8 surgeries. Mom has dropped everything and run to my aide for every one. After spending the last 3 weeks together, I've realized that I always proclaim my love for the Big Man and I really have barely mentioned the other major player in my life.

Oh, Mommy, How do I love thee? Let me count the ways:

Mommy and Bridge on my wedding day
Don't we look alike?

1) Mom is my biggest cheerleader. When I am feeling unattractive, she knows just the right thing to say. When I lift my shirt up above my head in the living room and say, "Mom, does the left one look slightly bigger than the right?" She takes my self-doubt seriously. She never tells me I'm being silly. She takes it seriously and she tells the truth! Mommy looks, critically, at both new breasts. She might even get out a measuring tape to take a closer, more scientific look. She asks me to turn to my left and turn to my right. Then she kisses me on the head and says, "They're perfect! I love them!"

2) She talks
and talks
and talks
and talks

When your life is a living soap opera, the best medicine is to forget about all the really huge life-changing stuff that's going on. People and US Weekly come in handy, but really the best medicine is a good, long conversation with mom. My mother will talk about anything. We talk about interior decorating and real estate, politics, and, of course, gossip.   My mother is like an elephant, she never forgets a face, a name, an occupation and marital status, or a child's name, occupation, and marital status. My mom loves to read the high school sports section of her local paper religiously. Why? She hasn't had a child in high school in at least 10 years. She reads the sports page because her friends and her neighbors have kids in high school. She likes to be able to personally congratulate them on their child's accomplishments when she runs into them in the grocery store.

You get the picture. Next to going out to dinner with the Big Man, talking to my mother is my favorite activity.

3) Last, but certainly not least, she does whatever needs to be done, no questions asked and with no expectation of repayment. Five years ago, I was bald as a baby's butt and just one week post-radiation. I wanted to move back to Boston to be closer to my boyfriend of one year. My mother not only allowed me to move, she moved me. I couldn't lift a thing. I was just a few months post-surgery. She drove furniture cross-country and then moved it all in for me. No questions asked.

Since that move, she has come up to Boston every three months to sit with me and hold my hand as I received my three-month scan results. She books flights. She books hotels. She takes me out to dinner. She takes me shopping and out for manicures to take my mind off my impending doom. She goes grocery shopping and cooks dinners that are frozen and ready to use after she leaves. All in all, she keeps my life running.

When I had my double mastectomy, Mommy moved to Boston for more than a month. She uprooted her life. She left bills and friends and the comfort of her own home. She found a long-term apartment down the street from my house and was at my disposal before I woke each morning until I fell asleep at night. She found a lovely B&B owned by an Irish couple that is three doors from my home that has become her second home. (if you ever want to visit Boston, I highly recommend it! www.aisling-bostonbb.com)  I owe my very life and all of my cancer fighting success so far to my mother's constant help. I couldn't have faced all that I have faced without her help.

Two Hot Girls on a Hot Summer Night

My mother is the ultimate portrait of a lady: graceful, selfless, smart, funny. She knows how to handle every situtation in exactly the right way, from talking to doctors to making career choices, from gardening to cooking & cleaning, from buying a house to renovating and decorating it. Mom has never steered me wrong and she is such a source of help, support and advice for me and for my three brothers. In fact, now that I mention it, how in the hell did she manage to raise four kids who were all a year and a half apart in age? Many women are exhausted by two, imagine raising four kids all under the age of five!

When I was growing up, my mother and I could barely speak without arguing; I believe it's because we were so much alike. We knew how to push each other's buttons and we couldn't help ourselves! I hate cancer, but I will forever be, on some level, very thankful for this nasty turn my life has taken. Cancer brought Mommy and me closer than we ever would have been otherwise. My mother is the port in this storm. This life would be unbearable and the situation would be untenable without her constant assistance. I can sleep soundly at night knowing that Mommy's got my back.

 Mommy can never be repaid. Saying "thank you" will never be thanks enough. Helping her move, taking her to dinner, remembering her birthday or Mother's Day, nothing I do could ever be enough repayment. This blog entry isn't enough. This ode could be a book.

The only thing I could possible do is take this opportunity to reassure her, to promise her, publicly: Mom, I promise never to put you into a retirement home. In fact, I think I owe you and all your best friends a very comfortable old age!

I'll close with my favorite version of a "Thanks, Mom" courtesy of Poet Laureate Billy Collins