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. 

The Ol' Ticker

It's time for an update everyone! Do you have on your big girl pants?

So the most recent drama in Bridget-world revolved around my heart. My beautiful, loving, humongous heart. My heart is probably the organ I love the most because it conspired with me to make the best-wedding-ever a reality and it brought The Big Man, as he shall be known on this blog, into my life.  That's The Big Man and me in Rockport, MA. See....isn't he friggin' tall?? Totally deserving of The Big Man title.

So, The Big Man and I both really like my heart. I think on a day to day basis I work out the ol' ticker pretty regularly with all the love that I send everyone's way. But, unfortunately, the chemo is not kind to my heart.

Five years of chemotherapy can take a serious toll on one's body. That is one of the many downsides of having metastatic breast cancer which makes it so difficult to treat and to beat. I will never forget the moment in 2005 when my mom, dad and I went to visit my mother's long time thoracic surgeon. This was shortly after the devastating cancer diagnosis and we were having a pow wow to decide the plan of action. Understandably, my clan was in full on fighter mode.

After making us wait for more than an hour, we were the only patients left in the waiting room. Here's a life lesson for all of you, if the doctor wants to make sure the office is cleared before seeing you, it's going to be a long and difficult evening. After a cursory exam he brought us into his office. He seemed flustered, also not a good sign. He sat down behind his desk. His office was the typical dark mahogany with framed diplomas everywhere, except there were stacks of patient records on every clear surface available. It must have been a defense mechanism that, after we left, all I could talk about was how I wanted to get in there and clear up his clutter; but I digress.

So he sat us down and launched into a long winded monologue. I don't remember much about the monologue except two phrases. The first, "This cancer is incurable." The second, "I want to be wrong, but I would be surprised if you lived to see 30.  Yes, I could give you some drugs that will bide you some time, but I want to you to know that each drug might give you only an extra year or two."

The world started spinning. The only thing I knew to do was cast a side glance at my father. I will never forget the pain on his face.

I took a deep breath and started asking questions about clinical trials, surgeries, different hospitals with specialists. I pride myself on staying informed and educated. After my diagnosis I did the only thing I knew to do, I started reading books and medical journals. I wanted to stun this doctor with my knowledge. I wanted to challenge his hypothesis so that we could come up with a plan. But every possible solution or comeback I had, the doctor seemed to have an answer for it already. 20 minutes into this horrible conversation, Dad spoke for the first time.

"Hold on a second here. What do you mean, Incurable?"

I will never forget how his voice cracked and how he reached for my hand, but the distance between our two mahongany chairs was simply too great to grab hold.

In the past five years, I have learned so much.

Here's what "incurable" means. Once breast cancer is metastatic, it has spread to the bones, lungs, liver or brain, and no treatment or combination of treatments will be able to completely eradicate the disease. Although it may respond well to a given treatment, metastatic cancer will, in almost every case, develop resistance to that treatment and eventually grow back and spread. That is why a cure has been so elusive. Cancer is friggin' smart and over time on a certain drug, the cancer cells remaining in the body will figure out how that drug is working and find a work around. It's like encountering a traffic jam. The cancer gets stuck for a bit, but then the little wench reprograms it's GPS and goes a different route. There are so many millions of cancer cells in my body, eventually one of those teeny tiny little suckers is going to grow. When you catch cancer earlier, there are fewer cells to kill, so you have a higher survival rate. In the case of breast cancer, early breast cancer has more than a 95% five year survival rate. For metastatic breast cancer, the five year survival rate is less than 20%.

So, when the cancer progresses, another treatment is tried, and then when that treatment fails, another is tried and so on.  This is referred to as "lines" of treatment. The metastases themselves and the different lines of treatment all cause side effects. I've been through several "lines of treatment", but I know there will be more lines to come. I plan on living a long life, but it's going to be a tough one.

It's been long enough that now, not only do I have to deal with the treatment and the cancer, but I also am starting to deal with the side effects of years of treatment.

In January, I found out my heart was failing. Good heart function is considered about "60% EF" or higher, whatever that means. The drug I am on, Herceptin, is known to cause Congestive Heart Failure, so they scan me regularly for trouble. For years my "EF" was around 60%. Then, in January, they scanned my heart and saw my heart function drop. My doctor called at 6pm on a Friday, never a good sign, and immediately ordered I stop my drug regimen. We wanted to see if my heart function would bounce back after a break. I got another scan of my heart earlier this month and my heart did not get better.

Which brings us to this blog post. This week I went for an echocardiogram and had a meeting with my new Onco-Cardiologist.

What is an Onco-Cardiologist you say? Well, Brigham and Women's Hospital and Dana Farber Cancer Insitute have teamed up to start a cutting edge department in their cardiology division, aka the division that treats hearts. This new program is looking at the toxicity of chemotherapy and studying how to prevent toxicity in the first place, how to detect it earlier, and how to treat it once the heart is affected by treatment. Exciting stuff!


The Echocardiogram

An Echocardiogram is really a fancy pants name for an ultrasound of my heart. Most women get ultrasounds when they are pregnant. It's fun and exciting and you get a print out of the baby for your fridge. I have never had one of those ultrasounds (I can practically hear The Big Man breathing a sigh of relief!) but I have had many ultrasounds of my boobies and my lymphnodes.

As of this week I was an Echocardiogram virgin. Now that I have had my first, I would say the Echocardiogram is the most like the pregnant ultrasound, which made me sad. They turn on the machine's sound so you can hear your heart swish swishing. I wish the swish swishing I heard this week was a little baby's, but alas that is not to be at the moment. Instead the goal is to keep me alive long enough to have little babies and hear their hearts on this ultrasound machine!


The Echo lasted about an hour and they pressed this wand all over my chest. I just had a mastectomy about 3 1/2 months ago so The Girls are quite tender, and by quite I mean really, really insanely tender, so the Echo was really not fun.

I then met with my new Onco-Cardiologist whom I love a) because he's easy on the eyes and b) because he's young and clearly brilliant.  I am a huge fan of young doctors. When you are surrounded by elderly patients, it is refreshing to converse with someone in your same generation. I also find that younger doctors tend to treat me more like a peer than a patient.

My Heart Doc says that my heart isn't amazing, but it is functioning at an acceptable level.

Everyone, on the count of three, take a deep breath and then let it out with a smile!

I don't need any heart drugs quite yet, but my new heart doc does want to see me every three months and I have to go for an echo every three months too. I'm not too thrilled because the echo hurt, and it sounds like Heart Doc thinks my heart function might eventually get to the point where I need Heart Drugs. So I plan on exercising like woah to try to delay that moment.

Maybe one day my heart function will return to normal. Maybe it will be like a Lance Armstrong-style heart beat. When that day comes, I plan on getting a print out from my ultrasound and pasting it to my fridge.


**disclaimer, the echo pic above is not actually my echo. It's courtesy of Google Images. I'm saving my heart pic for the day when my heart gets better!