Whirlwind

For those of you who don’t know I was diagnosed with breast cancer on December 10, 2009; specifically triple-negative breast cancer. This type of breast cancer does not respond to the hormones estrogen (ER) or progesterone (PR), or to the protein known as HER2. Other characteristics of this type of cancer are that it tends to be extremely aggressive and has a high rate of reoccurrence. My cancer is in my left breast, on the lower right side, approximately 3.5 cm from the center. It is a hard (very hard) knot about 1.5 cm in diameter.

Once I received my diagnoses, Cody and I decided that I must get to MD Anderson (aka MDA) in Houston for treatment. It is the “best in the world” – if you can get in. After spending an anxiety and cursing filled week I finally received an appointment, thanks to the herculean efforts of family and friends.

I soon found out that getting into the hospital was the easy part, now for every test imaginable. In four days I had a repeat mammogram (Gumby boobs), repeat ultrasound complete with a lymph node biopsy (ouch), blood draw, chest x-ray, CT scan (complete with barium solution and irradiated iodine), bone scan (more irradiation), and an echocardiogram. The bone scan and echocardiogram were kind of cool since I could watch the exam on my own screen; Cody got to watch the echocardiogram.

December 29, 2009
After the initial mammogram and biopsy on December 28th and 29th I met with my surgical oncologist – Dr. Isabella Bedrosian. She is a tiny woman, full of energy, exuding confidence, and I really like her a lot. She was very straight forward and let me know exactly what course of treatment she thought best, and most importantly why it was the best course of treatment. I learned that my cancer had spread to at least three lymph nodes. After meeting with me she called Dr. Gonzales, now my medical oncologist, and persuaded her to come into the office on Tuesday and see me. Once the appointment was made I began my dash around MDA taking almost every test imaginable.

January 5, 2010
Cody and I met with Dr. Ana Gonzales-Angulo; another tiny woman with tons of energy, radiating confidence and positive energy. She let me know that my cancer is Stage II, and has not spread to other parts of my body. This is good. She also asked me to be part of a clinical trial that is helping to develop more treatments for triple-negative breast cancers. This type of breast cancer has only been identified within the past few years and there are few targeted therapies and treatments.

So far I’ve completed two clinical trials, and am taking part in another. The two that I have completed involve using saliva or blood to identify breast cancer, before it can be detected on a mammogram. I got to chew gum and spit into a tube for five whole minutes. When else can you chew gum and spit for 5 minutes? The other test involved more blood, but heck what is 2 more tablespoons??

Yippy!! My insurance allows me to participate in the clinical trial investigating treatment options. In the trial I will receive the “standard care” drugs, in addition to the investigative drug (if I get randomized by the computer for the study drug), additional tests for monitoring my treatment progress, and my own research nurse – Julia. Julia is great. She is there to help Cody and I not only navigate the maze of treatments, side effects, etc. but also is there to help with access.

The clinical trial (aka CT) involves the investigation of RAD001 (not a real drug name) and its ability to effect the signaling pathways of breast cancer tumors identified as triple-negative. The drug was recently approved by the FDA for use in renal (kidney) cancer, so I’m not trying a drug that is untested. In order to see if the drug is working they have to take another biopsy of my tumor before I start chemo, and then another biopsy of the tumor 48 hours after my first chemo treatment.

January 6, 2010
Time to start the study – I’m going to be a trial human, someone who may help someone else down the road; but first I have to get through another needle and another biopsy. Cody and I drive back to MDA in the early morning. I take 1 mg of Ativan for my nerves on the way and check-in for my test. Julia meets me in the waiting area in the back and I’m assigned to a room. After all of the pre-biopsy stuff, my tiny room fills with doctors – there must be at least 5 of them, all wanting some of my cancer cells. My cancer is hard as a rock, seriously like hard candy, and they have to stick me repeatedly and move the needle in and out to get any cells. Have I mentioned how much I HATE needles?? This is by far the worst thing yet, but the doctor holding my hand (I’m in the big time, no nurse for me!) is helping me concentrate on my breathing, ala Lamaze, and it is over before I know it. Now for another blood test…and my veins have collapsed…finally get the blood out of the other arm.
Cody and I have had enough of the hospital for now, we hop on the train and head to downtown Houston and meet my mother for a tour of her office and lunch. On the way back from the hospital we stop at the Houston Museum of Natural History and check out the Faberge exhibit.
Back at MD Anderson the waiting begins. I really want to receive the study drug, but am worried that the computer will not pick me; so much has not gone my way in all of this. I’m a nervous wreck as I check-in for my first “infusion” therapy session (aka chemo); and my orders are not there – strange. Then I get a phone call from Julia. She has been waiting 2 hours for the results from my pregnancy test, and it is negative – good. I also got randomized into the study drug group – YES!!! This means that for the next 12 weeks I will receive 6 pills of RAD001 in addition to the standard therapy dose of Paclitaxel (aka taxol). Cody and I are lead back to the treatment rooms – like a mini hotel room with a TV, DVD player, bed, chair and table, sink, and room service. Yes they have room service, free with no tip. The nurse has a really hard time finding a vein, mine are really small, she finally gets one but has to use a 24 gauge needle (the smallest that they have). After the 2 hour treatment Cody drives me home. I feel okay, just a little car sick, and my body hurts.

January 7, 2010
We are staying in Houston. No appointments at the medical center, but I feel like I’m getting the flu and Cody is really tired. In the afternoon we head out to HEB and by the time I get home it feels like I’ve flown around the world – time for a nap.
The Longhorns lost. Oh well. I was only able to stay up for the first quarter anyway.

January 8, 2010
You know you have spent too much time in a place when you go to check in and the receptionist greets you by name. My last biopsy for 6 whole weeks! I’m so excited I can’t stand it, even with the Ativan I’m having a hard time containing myself. I let Julia know about how difficult it was for the nurse to find a vein on Wednesday, and she makes a few calls – determined to get a port placement. A port is a devise placed under the skin that will allow instant access to my veins, and allow me to save the poor veins in my extremities. It is placed under anesthesia, but is less painful than being constantly stuck! Once again doctors descend on my room en masse. The same doctor holds my hand, but this time they only have to stick me once. My cancer appears to have responded to the treatment by softening up a little. Good news to end the week.

January 9, 2010
Today I’m cutting off my hair, and if I can donating it to Locks of Love. Karissa is going with me.