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