Senate Health Committee - Jun 26th, 2013

Senate Health Committee - Jun 26th, 2013

About 20 minutes in a breast cancer survivor provides testimony of her support for affordable health care coverage. And then my friend Liz, also makes her compelling remarks.

http://thelizarmy.com/

2 Years

A young woman went online to research her disease and discovered my blog a few months after I started it. She friended me online and we shared our experiences with breast cancer. She was working, married and 29 at the time with a 2 year old, so we had a lot in common. She finished treatment and made blog posts of her own regarding her struggles with self-image, energy, returning to work and of course the anxiety of recurrence. 

A year went by and I noticed I hadn't seen her FB posts, and discovered I must have made her edit list for some reason. After visiting her blog, I learned that her cancer had returned and decided to settle in her brain. Obviously we didn't have so much in common anymore. Her “whole” brain radiation caused seizures and blinding pain and her family was hurting. It was hard to read those posts. I just checked in on it again today and learned she passed away in April.

Her story is a painful reminder of why I went through what I did. Research today suggests that breast cancer may be over-treated, and those opinions scare me. If I hadn’t performed a self-exam 2 years ago, or decided to wait and see, I don’t want to think of what my prognosis might be. When my oncologist gave me my statistics during our first consultation, I read her print-out that treatment only improved my odds of survival from cancer by something like 7% based on my age, sub-type and other statistics. I remember thinking what most people would: why would anyone endure additional pain and suffering from chemo and radiation for an extra 7%? 2 years later, I can see now that is 7% more people who got to stick around longer to be alive, be happy, accomplish goals, create memories, love more, and do more. People have conflicting opinions of Angelina Jolie, but I understand her decision to do everything she could to reduce her risk. Everyone should have access to genetic testing as well as the access to preventative treatment. It should not be a privilege to be alive and healthy just because you can afford it. But that’s for another blog… 

So as of June 8^th I am 2 years NED (no evidence of disease). But that does not mean cured, it only means I’m being watched, and so far… so good. My mom also celebrates another 10 years so far, and so far… so good. But it will always be a threat, and something to take seriously. So while I complain about my job, my bills, potty training, politics or the weather, it’s always a nice reminder that at least I get to be around to complain about life. 

Rest in peace Elisha.

Love Songs

Life update:

2 years ago, my results were in from my biopsy and I was officially in the IDC (invasive ductal carcinoma) club. But now I'm past that. I have an exciting new job as a contract analyst with a growing company and a 7 minute commute. My husband also started a great career as an account man in November and has weekends off! I have a year left of school, and I'll be done on my 35th birthday if I stick with it . I can also pull off a pretty sad excuse for a pony tail. As long as I get to be with Olivia, I really can't ask for more. I heard this song today and I realized that when I was a teenager, I related sappy songs and movies to my latest crush. Now all I do is think of my daughter and how much I love and miss her when we're apart. Unlike highschool, I'll love her like this forever. I am very blessed to be able to think about the future, and be with her when she has her first love, her first job, her first anything.

Amazing friends, a home, a family and halfway to my career goals. I'm happy, and my heart is full :) Very happy to have gotten this far!! Thank you for your support, love and encouragement.

Decoding Annie Parker

Coming soon is a movie based on the true story of a family's struggle with breast cancer and the discovery of the BCRA mutation. I did not test positive for the gene, but since my Mother did have pre-menopausal breast cancer, the Doctors still suspect a genetic link. There are thousands of genes yet to be discovered as a link to hereditary cancer. I hope Olivia never has to think about it.

http://decodingannieparker.com/

Your Evening Cry

Repost from Jezebel. Jill is beautiful.

Say What?

I have a 30 minute commute to work every morning, and since I ran out of money to pay for XM radio, I've decided to start listening to NPR. In the last week they have broadcasted two separate stories claiming that early stage breast cancers should probably not be treated as radically as they have been lately. They claim overdiagnosis is causing too many women to undergo unnecessary surgery, chemotherapy and radiation, which would not change their survival or recurrence rates. They elude to a conspiracy of the healthcare industry making money off of naive patients.  The first UCSF article even claimed that some early stage cancers probably would have resolved themselves over time (Alvarado, Ozanne, and Esserman,  e41). At first listen I felt my face flush wondering if I had made the right choice.... did I go through suffering and misery and mutilate myself for no reason other than simply listening the good advice of Kaiser Permanente? I decided to google further and was once again assured that I did make the right choice.  Recurrence is real. Breast cancer, if left untreated can decide to migrate into other vital organs and ultimately cause death.  Upon reading these articles, I do see a valid point, that late stage cancers seem unaffected by breakthroughs in early detection, but that shouldn't have a weigh in on how early stage cancer is routinely treated. Patients should still be entitled to options. 10% this and 2% that doesn't say where Peggy Sue will end up in 10 years.
Today's NPR article quoted co-author of the new study, Monica Morrow as saying "I have seen young women who leave the office having signed up for lumpectomy," Morrow says, "and they call back the next day and say, 'Well, I was on the Internet or I was talking to my friends and they said I'm a young mother, don't I want to do everything I can to be there for my child? I think I want a double mastectomy.(Knox, 2012)" What sticks out to me in this quote was the reference to young women. Where are the factors indicating that young women who opt out of mastectomy have no recurrence? I can list 3 women in my circle of contacts who have opted for lumpectomy and have still had a recurrence. It seems way too early to make that call and point the drastic finger to "young women." Young women are the ones who can catch cancer early and stop it before it spreads. A study telling women to opt out of mastectomy and/or radiation unfortunately sends a message that they probably shouldn't worry about cancer too much at all. Even though they are two completely different statements, they are read between the lines the same way to someone who has not had to experience a biopsy or be read a path report. If I had never had cancer I would have come across these two studies and probably thought..... hey cool, even if the lump is small, these media releases tell me it's probably no big deal, right? WRONG. Early detection is key and making a treatment decision is up to the patient, the doctor, the family AND a second opinion! EVERY case is different and should never be classified for treatment based on early stage or tumor size etc.

OK, rant over.

http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2012/zds00112000e40.PDF

http://www.npr.org/blogs/health/2012/11/28/166064484/more-women-choose-double-mastectomy-but-study-says-many-dont-need-it

Dystrophic Calcifications

Dystrophic Calcifications OR (as I heard it in my head) Catastrophic Complications

I was hoping to post great news for my "Cancerversary," this month that my MRI and Mammogram came back clean. Alas this news was delayed as they took a gazillion pictures of me by smashing my boobs and making them glow blue and still didn't like what they saw: tiny little scattered unknown tissues slightly near but separate from my old tumor site. It wasn't a normal shape and it was in a weird spot, blah blah blah.

They naturally want to biopsy it. My first response? "No thanks, can I go now?" After much convincing I agreed to let them have another piece of me for piece of mind. The alternative is a mammogram every 6 months or do nothing and take the cancer spreading gamble. Really? After all that cutting, poisoning and burning it could come back in less than 6 months? Apparently sometimes, yes.

Ahhh, technology, so advanced yet, not? I was able to try a new ride in radiology this time: the Stereo Biopsy. It's a mammogram and needle core biopsy in one! Oh joy. I lied on my belly while a robot (yes a robot) used something like this on my already mutilated boob.

I dare you to google it. They even had an animated version of what was happening on screen for me to watch. A drill -like, hollow needle whirled in and out about 20 times to make its way through and take what it came for. I was not a fearless and brave woman. Even though I was numbed up, I boo-hood the whole entire time, but they were all very patient with me. All the tissues I could ask for. No stiff drinks though.

So, back on the ice pack and Tylenol regimen. After a little Chinese food and TV, I was back to work the next day. But the good news is that it was benign!

I was convinced that what happened was my fault for not diligently massaging my scar tissue, but the Dr. assured me that it is very common after surgery and radiation to have calcium deposits and it had nothing to do with anything I did or didn't do.

So, one year later, I am proud to say I am officially part of the NED club :) Happy Cancerversary to me!

Also, my husband turned 40! I had a Bender cake made for him and we had the party at his favorite spot, The Streets of London Pub :) Here are some pics: