Positive or Negative

For this blog post I'm going to get all educational for you, so if science or learning has not been your cup of tea, I will excuse you from reading the rest of this post. Grab me a snack on your way out, For those of you that enjoy learning how things work (cough engineers cough), then this post is for you. So let's get educated.



We will start at the very beginning (Julie Andrews anyone?)...

I have a tumor in my left breast, it is roughly 1.5 cm which I like to compare to the size of a large blueberry. This blueberry is a ball of cells that really wanted to be normal, but with a little peer pressure from the wrong crowd, began multiplying out of control, making it more difficult for the normal cells to do their job. Much like the hallway of a local high school, this group of "bad kids" will keep recruiting more and more kids to join their "gang" until there are no good kids left.

This guy is a real jerk.


The good news is, every group of kids, or cells in this case, have a weakness, we just need to figure out what it is. Any time a breast tumor is identified, it helps to take a sample of the tissue to test for biomarkers, or receptors for tumor growth. If we can identify what type of receptor is feeding the growth of the tumor, we can hopefully turn it off, thus starving the tumor and stopping growth. It is really simple math. Oreos + my belly = muffin top. Take away the oreos, no more muffin top.

For breast cancer, there are three types of receptors doctors look for: Estrogen, Progesterone and HER2 (human epidermal growth factor receptor 2). If we can identify that the tumor has receptors for any of these 3 things, we can cut off the supply and at the very least, keep the cancer from spreading, if not eliminating it all together.

Estrogen and progesterone are two very important hormones in the female body, largely responsible for controlling fertility. They also can impact the growth of cells and in this case, the overgrowth of cells, leading to cancer. In addition, super smart scientists have also discovered the HER2 protein on breast cells and have linked higher levels of this protein to breast cancer. Enter stage left: the positive/negative game.

When I had my biopsy 2 weeks ago, they sent a sample of the tissue to a lab to test if I have any of these three receptors on my tumor. Eighty percent of women with BRCA2 gene mutations like me (this will be another future post entirely) have ER+ or estrogen receptors on their tumors. So naturally I believed I would be ER+, I would have surgery to remove my tumor, take an anti-estrogen medication to kill any remaining cells and go skipping off into the sunset because I have beat cancer. Mic drop.

Second Obama reference in a week? Must be an election year.

Unfortunately for me, I tend not to follow the curve.

Last weekend, I received the unfortunate news that my markers had come back and that I was ER-, PG- and HER2 equivocal, which is a fancy scientific term for "I dunno". They would need to run an additional, more specific test on my tissue sample to determine if it is HER2 positive or negative. The even better news (sarcasm) is that regardless of that lab result, my tumor is not the preppy-kid-who-ditches-school bad, its the smokes-behind-the-bleachers-and-robs-the-liquor-store kind of bad. The aggressive, fast growing, take no prisoners kind of bad. It just got serious.

That blueberry, he can be pretty mouthy too!

If I have an HER2 positive tumor, I will receive 3 medications to turn off the gene that creates the HER2 protein that is making my cells grow out of control. One of these medications is only approved by the FDA to be given prior to surgery, so if I am HER2 positive, I must have treatment before surgery. I will have 18 weeks of treatment, followed by surgery to remove all breast tissue, and then continue to get an infusion of one of the medications for up to a year. While all of this sounds pretty terrible, the good news is this treatment is very effective and can cure up to 50% of patients completely prior to surgery.

If I do not have an HER2 positive tumor, I am then branded as a "triple negative" breast cancer patient. Triple negative breast cancers are tough to treat because there are no known receptors for the tumor. We have no way of knowing exactly how to turn it off. For this reason, my oncologist is recommending we do chemo prior to surgery because then we are able to use my tumor as a barometer for how well treatment is working. Getting smaller? Good news. Not get smaller? Not good news. Since we don't know any receptors for this type of tumor, removing the tumor prior to surgery would make it more difficult to confirm that the medication I am getting is actually working on my specific tumor type. So either way we look at it, we are set up for chemo ASAP.

My oncologist assured us that the results of this second lab test would be back within a few days, so we would know by Wednesday or Thursday this week what my result should be. Once we know my result, then we will know which chemo plan we are going with and can start treatments. For reasons unknown to me, it's Friday and we still have no results. No positive or negative and now the waiting game continues.

In the meantime, we will stay busy. My mom flies in today to move into our basement for an undetermined period of time. If I catch her sleeping during the day and playing video games all night, she's gettin a job! We have date night planned for tonight and a lot of playing with kiddos for the next two days until my appointment at the cancer center Monday morning. Hope you all enjoy your weekend and I'll update again on Monday!
My sidekick at work on Thursday





The waiting game



Well friends, a lot has happened in the last two days, let me recap.

Tuesday, 11 am
I received a call from the oncology office asking if I could be available at 2:15 that afternoon to meet with my new oncology doctor, because they had a cancellation. Yay! Of course I could be available!

Tuesday, 2:15 pm
Mitch and I arrive at the oncology office and immediately I'm blown away by how much older everyone is in the waiting room. Like decades older. This immediately adds to my anxiety but I shove the lump that's in my throat back down to my belly and walk up to the receptionist to check in.

Tuesday, 2:30-3:15 pm
I fill out a ton of paperwork  and commence waiting in the waiting room, which is packed with people. Continue to watch people be called back behind the magical door of mystery while we wait.

Tuesday 3:15-3:45 pm
We are still in the waiting room and now an hour past our appointment time. Mitch and I are both starting to get tense, so we break the tension by playing on snapchat.



Mitch LOVES giraffes, he actually gasped out loud when he found this filter.

Tuesday, 3:45 pm
It's my turn to enter the magical door of mystery only to discover a scale, blood pressure cuff and several exam rooms. After doing the usual height, weight and measure, we are put in an exam room to, you guessed it, WAIT SOME MORE.

Tuesday 4:00ish pm
Jay, Mitch's brother, challenges me to look in Mitch's ears with the otoscope. Never one to turn down a challenge, ear check complete!



As I mentioned before, there is a lot of science that I will explain in a future post about breast cancer and how it is treated, but for the sake of this post, here is a very high level summary of what we know and what we learned.
  • We still need one more test back to determine what chemo plan I will need to kill this unwelcomed visitor in my left breast. We took the opportunity at this appointment to briefly discuss each plan
  • I will definitely need chemo prior to having surgery, so I will need a port (a little button that is inserted under my skin that feeds in my vein to allow for easier IV infusions of chemo) and an echo (an ultrasound of my heart, because chemo drugs are hard on heart tissue so they want to make sure my ticker is good and strong before they poison it with medications). This should happen sometime this week.
  • We will follow up on Monday with the Nurse Practitioner to discuss what chemo plan we are going with. After some baseline labs, she will provide us with a ton of education on what medications I will receive, how often, side effects, etc.
  • Once I have my port and insurance has approved my plan, I will get my first infusion, so we are likely looking at that happening sometime next week.


We finally left the appointment around 4:45 and headed home to pick up the girls. Honestly, it was a whirlwind of a day and I was left feeling unsettled for most of the night, I didn't connect with my oncologist like I had hoped, probably due to the fact that we waited 2 hours to see her. She comes very highly recommended so I'm going to set aside our first impressions and hope that our next encounter is a bit more positive.

The good news is I rounded out the night talking with Sarah, my bestie from college, for an hour an a half, a lot about cancer, our kids and a little bit about medical marijuana. It made me laugh, it helped me vent and it gave me a positive end to my night, which is what I really needed. 

Photo stolen from Facebook circa 2010-- don't worry, we still look this young and rested.
Wednesday, 10 am
Oncology office calls, port and echo (sounds like a fine wine or something) are scheduled for tomorrow at 11 am/2 pm. Sweet, let's get this over with.  I text Mitch (he is in training all week for work) and start to figure out a plan.

Wednesday, 12:30 pm
Mitch calls me back and we decide that he should attend training tomorrow and I can have a friend stay with me for placement and take me home (they give me the good drugs so I can't be trusted to drive or be home alone for at least 12 hours). I get everything lined up and we are good to go.

Wednesday, 4 pm
My phone rings, caller is UNAVAILABLE, which means two things, daycare or doctors. I tentatively answer the phone to find out that Evelyn has a fever and cant go to daycare tomorrow.

Wednesday, 4:01 pm
$#^%$&#&^%*^%#*^#%*^*^%*^&*(#%^*%#

Wednesday, 4:30 pm
I wrap things up in my office to go pick up our kid, who looks and acts completely fine (seriously, this kid gets kicked out of daycare ALL THE TIME, she's a master manipulator). The older one on the other hand has a massive tantrum on the way out of daycare because she doesn't want to leave. I bribe her with Shopkins and get her in the van.


Wednesday, 7:00 pm
We get tomorrow figured out, crisis averted for now. Enjoy playing with the girls and take this time to laugh with them.



And now, here I am, Wednesday, 10:30, summing up my day for you. Tomorrow, I will take my first big step in transitioning to full on cancer patient, which really blows. But, I gotta play the cards I've been dealt. There will be a time when I will look back on this and remember it as  simple bump in the road, but for now, it feels like a mountain. At least I've got a good crew to push me to the top. Much love and sweet dreams!


Birthday cake

So, tomorrow is Mitch's birthday and although we don't usually make a big deal about birthdays around here, we at least use it as an excuse to eat some cake. Mitch's favorite cake is spice cake, so this morning, Kate and I set off to the store to get everything we would need to make a cake.

Normally I would be all Betty Crocker and make it from scratch, but I simply didn't have the energy for that today so Duncan Hines had to pinch hit (who can turn down pudding in the mix?). We were all pretty down with the news we received yesterday so I woke up this morning with a new attitude that we were going to have a good family fun day. I wanted to have some special 1:1 time with Kate, so off we headed to the store with her shopping cart in tow. I will let the pictures tell the rest of the story...


Please note, exhibit A: 3 year old wearing Anna dress with unbrushed hair to the local grocery store. If this doesn't scream independent pre-schooler, I don't know what will.


Into IGA we go, she is a very focused shopper.


First stop, butter for cream cheese frosting. She said Elsa was crying and didn't want to be in the cart. 


Her baby has settled down and now its time for cake mix, the real star of the show.


Good thing the sugar is toward the bottom of the display!


We couldn't leave without the macaroni! Her words, not mine...


Time to check out! She unloaded the entire cart herself.


Loading into the van and time to head home. Our shopping trip is complete!

In all seriousness, this morning lifted my spirits so high and spending this quality time with my girl made me so happy. Not to mention, she is awful darn cute! Now its time to make some cake!

It was the best of times, it was the worst of times



So, over the past week, among the half million people that I have talked to, someone mentioned to me that we will encounter a series of highs and lows throughout my diagnosis. Let's take a look at just how accurate this has been so far:

My week, in summary:
Monday:
Low, get diagnosed with invasive ductal carcinoma (for all my medical friends), breast cancer for the laypersons in the crowd. Although I felt "prepared" for this phone call and the possibility that I may have cancer, it still sucked to hear it.

Tuesday:
Low, wake up to the head cold that Evelyn has had for the last 2 weeks. I swear slimer from ghostbusters has slowly been making his way out of her nose. It's gross. And now I have it.
High, MRI gets moved up to Wednesday.

Wednesday:
High, I survived my MRI without a total mental breakdown (piece of advice, when they ask you if you feel claustrophobic in small spaces, the answer should always be yes. Thank goodness for headphones and pandora). Got the results this afternoon, no new tumors and lymph nodes were clear.


Even Obama was pleased with my results. Raise your glass, Mr. President.
Thursday:
Low, our air conditioner breaks on the HOTTEST DAY OF THE SUMMER. Because its the hottest day of the summer, the technician will not be able to look at it until tomorrow. Cue Vlaminck sleepover in the basement. Have you ever willingly gone to a sleepover with a 1 and 3 year old? Yeah, didn't think so. Luckily, they both slept through the night.

Friday:
High, air conditioner is fixed, temp in the house maxes out at 88*. By midnight, its a cool 74*.
Second high, we hung out with our close friends and played several hilarious, and slightly inappropriate, rounds of Telestrations. If you have not yet played this game, stop reading this blog and head to amazon right now. Better yet, here you go. You can thank me later when the clue "appendicitis" turns into "kidney avalanche".


Love.these.people.

Saturday:
Low, Meeting with the breast surgeon (Dr. M) and plastic surgeon (Dr. J). Both were wonderful, patient and kind, answered all our questions and gave us a lot of notes and resources. The low to this 2 hour meeting was that my tumor markers came back last night and it isn't what we had hoped. I have a lot of science that I can explain in another post, but ultimately I have a tumor that will require chemo before surgery. 18-20 weeks of chemo, IV infusions (which means I will need a port) every few weeks for several cycles.




I have tried to prepare myself for the likely need for chemo, but hearing it today gave me the realization that I'm not ready. Not ready to feel sick, not ready to lose my hair, not ready to be a cancer patient for 5 months. Today has been a low my friends, but that momentum has to be carrying us up to our next high. Til next time...