HI, YOU CAN CALL ME ADELE NOW BECAUSE THIS IS HOW I FEEL.
I was admitted to the hospital on the morning of 10/23 (around 2:00am) and wasn’t discharged until the following Friday afternoon. I am free at last! I tried blogging from the hospital bed but this is as far as I got (I just found this entry under my “deleted posts” section): “I am writing this from a hospital bed. The same one I have spent 4 miserable nights in. As I await this GI consult (that I’m beginning to think isn’t coming)…” As you can see I was not in the best head space so I’m glad I didn’t finish that entry. At least I tried, right? More on the hospitalization later.
Aside from that attempt at blogging I haven’t been able to write a thing. It’s not because I haven’t wanted to, it’s because October was an insane month. We have a ton to go over. So many firsts in October- my first surgery, hospitalization, chemo, t-shirt campaign, spiritual overhaul. Lot of stuff going on. Because of the amount of information I have to give to you, I may break this post up into pieces so that you aren’t overwhelmed like I am. This post will be more about the facts and the next will focus more on how I have been handling all of this emotionally.
I’d like to start from where I left off (xanax+wine breakdown waiting for biopsy reports) but first I would like to say something about my very first Breast Cancer Awareness month as someone with breast cancer. If you don’t care about how I feel about this, feel free to skip the next few paragraphs. No one is judging you.
PEOPLE WITH BREAST CANCER HAVE A LOT OF OPINIONS ON BREAST CANCER AWARENESS MONTH. I had NO idea the amount of controversy there was surrounding this time of the year until I started on (what I had hoped) would be a blog post dedicated to educating people on where their money would be best spent for breast cancer. This was the beginning of that blog: “I’m not going to lie. This will be the first year that I notice breast cancer awareness month as being more than football players wearing pink and everything being tagged with a pink ribbon. I’ll totally admit that I while I thought it was great that people spread pink everywhere I had never thought to look into whether or not things like this generated money for breast cancer research. Don’t get me wrong- breast cancer awareness is great but is it really great if it doesn’t fuel positive change? Like, I think I speak for most of us when I say that we’re pretty aware breast cancer is a thing. We’re definitely aware that pink ribbons mean breast cancer. But does this fuel donations? Does the NFL donate? If there are donations being made, who are they going to? Are these organizations using money for what we think they’re using it for? As of today (9/15/2016) I have decided to devote some time looking into this so that when it comes time to donate (if you wish) this year, you know where your money is going and what it is going towards. Hopefully I’ll have this post up before October 1st so you can make some well informed decisions!”
Man. I did research, I sent e-mails, I interviewed fellow cancer ladies, I put in WORK. I did not finish. I actually didn’t even get past that first paragraph. I hope to in the future but I think I needed this first year to really swallow what breast cancer “awareness” means to women with breast cancer. Women are angry. I saw women organizing protests of the pink ribbon, organizing a month of wearing nothing but black, chastising their friends and family for buying them anything with a ribbon. I needed to see this because I had no idea this was a thing. Big business obviously profits off of women having cancer. Look at the percentages of money actually going towards research on some of these products (now look at how many of those products are full of carcinogens). It’s pathetic. I think a lot of my thinking came to a head when Nick and I were in San Antonio and we approached the Tower of Americas (where we were having dessert-priorities). I noticed the top of the tower lit up bright pink. I walked over to a woman near a pink tent and asked what was going on. She told me that this was a private event for breast cancer fundraising (later Nick and I joked if she would have been a little nicer if I had ripped my wig off and told her I knew thing or two about cancer). Anyway, the point is that I have no idea how much they earned that night or what organization the money was going towards but I know that seeing that bright pink tower made me light up. I felt honored. I felt heard. I felt special. As we went inside I pulled out my phone and wrote this down in my notes to the women who I see cuss out breast cancer awareness month online:
Breast Cancer Awareness month. Think of how many different colored ribbons there are for different diseases. Which is the most recognizable? Pink for breast cancer. How lucky are we? I’m not kidding. How lucky are we to have such an identifiable symbol that brings forth so much attention and support. Ladies, how about instead of spending energy picking it apart for everything it isn’t, let’s embrace breast cancer month for what it is- an opportunity. The opportunity to educate, empower, and raise money for others. Sure, maybe .06% of a profit goes towards research but quit shaming my family and friends for buying me a mug with a ribbon on it because they didn’t do enough research. Stop it. Thank them for acknowledging this shitty disease and then educate them. Let them know where to donate and where to look for opportunities to help. October doesn’t have to be a slap in the face to those who are fighting. October can be the boost we need for research to prevent more women from going through what we’re going through now. I am thankful for October and I am thankful for the exposure of my disease because I am willing to trade out a few a-hole big businesses in light of the ones who are truly making a difference.
So that’s how I feel this year. I am sure many women will argue and I’ll piss some people off. That’s okay. Every person has every right to feel how they feel about whatever situation they are in. I’m sure each person copes differently depending on where they are in their treatment, recovery, or remission period. I may feel differently in the future but for now, I am grateful and I am embracing the pink.
Can we move on now? Choppy transition in 3..2…1… Let’s update!
- My biopsy results returned and my tumor was triple negative. There are several reasons to believe it was actually the same tumor that just began to grow back when I was moved from AC chemo to Taxol chemo.
- Because I love Fall and this cancer reemergence sucks, we have dubbed this new ordeal #pumpkinspicecancer
- I had a lumpectomy on October 6th as well as a lymph node biopsy. The doctor removed a margin of tissue around the cancer tumor as well as 3 sentinel lymph nodes.
- THERE WAS NO CANCER IN MY LYMPH NODES OR THE MARGINS AROUND MY TUMOR!! This is fantastic news! This means (well there’s a 9% chance this could be wrong) that my cancer had not spread to anywhere else in my body.
- Surgery recovery was smooth besides a small seroma (fluid buildup) that needed to be drained. That part sucked and it happened on my mom’s birthday (sorry mom).
- I was advised that I would need to start back on chemotherapy to kill off any cancer cells that could possibly be floating around in my body.
- I went to my oncologist and her idea was to put me back on two more rounds of AC (the first chemo that kicked my butt). I was not comfortable with this. Like my new doctor explained to me (and what I had been thinking)- AC obviously did not work completely the first time or there would have been no cells to continue growing on Taxol. So instead of saying my tumor was chemo-resistent to Taxol, my tumor was in fact resistant to both therapies but to different degrees.
- After this appointment I talked with my mom, my husband, and a local breast cancer advocate, all who recommended a second opinion. At first I was hesitant because I didn’t want to hurt my first doctors feelings. We had gone through so much together! Looking back it sounds stupid but I was genuinely concerned that she would be offended if I switched doctors. Here’s the thing though. I wasn’t comfortable with her plan and I am SO GLAD I listened to other people because I think that getting a second opinion saved my life.
- My mom is the best mom in the world and basically staged a sit-in in the waiting room of my new doctors office for two days until they agreed to see me. My new doctor stayed late (we were the last to leave the building after my appointment) and I think she is saving my life. She initially came into the room and said “okay, so I see you just had a lumpectomy and you’re doing really well” and I said “Ha, oh no. I am 26, there’s no familial history I know of, I am BRCA2 negative, my tumor is chemo-resistant, I just had a lumpectomy, and my doctor is suggesting 2 more rounds of AC.” You should have seen the look on her face. Her entire demeanor changed from “Let’s talk options” to “Oh shit”. She grabbed a piece of paper and began rattling off studies from Japan along with numbers and different ways to attack my cancer. [Before this appointment I was given a bunch of options for my next steps. This may appear helpful or empowering but it sucked. Don’t ask me what I want to do. Tell me what I need to do!] This new doctor point blank told me that my cancer “is not the average bear” and gave me a plan. She looked determined and she looked serious. When I asked her if a mastectomy was the right choice for me (many people had told me it wouldn’t change my rate of survival) she looked me in the eye and said that because my cancer is so unpredictable and aggressive, we need to take every measure and I need these bad boys chopped off (she didn’t exactly word it like that but that’s what I heard). I wasn’t just another patient. I was a priority. At a follow-up last week one of her assistants actually told me “she has told us all from the very beginning that we are keeping a very close eye on you and she wants all updates on your case”. I feel comfortable in her hands. She also reminds me of my mother-in-law which is comforting and makes me smile.
- This is the piece of paper I walked away with and the plan that I think is going to save me. The plan: 4 cycles of Carboplatin & Gemzar (2 weeks on and 1 week off= a cycle) followed by surgery (mastectomy with expanders), possibly radiation (I’ll have more info after I meet with a radiation oncologist), 6 months of an oral chemo named Xeloda, and then reconstruction surgery. The most common treatment for triple negative is AC+T chemo as Carbo+Gemzar, and Xeloda are for metastatic disease. Even though I am not metastatic we are throwing everything we can at it in hopes that it kills whatever cancer is lingering around. I have been told that Xeloda is basically an insurance policy and has proven to be effective in preventing recurrence in triple negative patients. Put it on my tab!
- So what was I told to expect from Carbo+Gemzar…. I was warned that nausea, hair loss, small fevers, and flu like symptoms were to be expected. I was also told that it should be nothing compared to AC. I was prepared with my arsenal of prescription bottles at home to cover any side effect that popped up. My first infusion was on 10/21/2016.
So what the heck happened?! The actual infusion went as expected except when they began pushing the Carboplatin I immediately was overcome with nausea and had to ask for some extra medicine. That leveled out and I was feeling okay until around midnight on the the 23rd. I got into bed and began shaking. I’m not talking “the chills” shaking. I was violently shaking and I couldn’t stop. Nick held me and covered me in blankets but nothing was working. I asked him to go get a trashcan and about 30 minutes later the vomiting began. We woke my parents up and the next hour was filled with me trying to drink water, take medicine, lay down, etc. Nothing was working so mom called the doctor on-call and I was taken to the emergency room. I remember getting there and them taking blood samples and accessing my port so that they could give me IV nausea meds. My fever was around 101 at this point but no amount of medication was lowering the fever or keeping me from throwing up. I was in so much pain because while vomiting I was continuing to shake so everything hurt. I remember telling Nick it felt like my blood was full of razor blades. Something was wrong. I kept looking at my mom and saying “I’m going to be okay, I’m going to be okay” while I cried.
They admitted me and the next 6 days were filled with vomit, shaking, pain, and fevers up to 102.7. I don’t remember much. Apparently I had 5 visitors besides my parents and Nick but I don’t recall them being there. I don’t remember texts that were sent or movies that were watched. The only things I remember are the times I was getting bad news. When the IV meds weren’t touching my fever, when the nausea meds weren’t helping, when my potassium was so low I had to get infusions. My muscles ached and my stomach grumbled but I wasn’t allowed to eat a thing. I received two shots a day in my stomach- one to prevent blood clots and one to raise my white blood count. They ran tons of tests and I was even put under for an endoscopy which yielded no results. The only explanation was the chemo.
I went back to the oncologist on Monday hoping to get an updated game plan and to continue treatment. We decided to decrease my chemo going forward by 20% and load me up on steroids and other meds to help control the side effects. Unfortunately my white blood cell count and ANC (absolute neutrophil count- or my infection fighters) were down so I was not allowed to have chemo that day. They gave me a shot to boost my numbers and I was told to return Wednesday.
Here’s my post-chemo regimen. This is also supplemented with Compazine and Promethazine as needed for nausea.
Wednesday was my second chemo and so far, so good. No fevers and no intense nausea. I have been given a schedule for when to take which meds so that I can stay ahead of anything that may pop up. I have a follow up today (Friday) and then, hopefully, I can head back to Waco. I’ll have two weeks off from chemo before I start over again.
Until then, my new normal is lab work and pills, pills, pills.
That’s it. How do I really feel? I’ll save that for Monday. Too many feels for one post. I’ll touch on my new gratitude journal, meditation, and my outlook on relationships. Do I sound like a new, hip, woman? Um no, I had a Blizzard for dinner. Baby steps, people.
OH! Before I forget! We launched a t-shirt fundraiser! This was designed by a family member who did an awesome job. I think it’s fabulous because it’s Wonder Woman upside down, my initials (MM), and it also kind of looks like the Whataburger symbol (bless up). If you’re interested, here is the link to purchase:
It comes in a hoodie, tank, v-neck, and youth sizes as well. The campaign is only open for 8 more days but can be restarted if there is a need!
Another cool announcement is that my family member also bought the domain http://www.netflixandchemo.com which means no more having to type in or remember the .wordpress. part of the equation!
This last part is for everyone asking how my at home meds have been going since Wednesday- well here’s a pretty real update from early Friday morning:
Voice message from Maegan to Nick at 4:30am: “Hey babe. Man, these steroids are not letting me sleep. I am soOoOoOo tired. I wrote a blog, I watched an episode of Dateline Murder Mystery, and I just took a Buzzfeed quiz about what my Subway sandwich of choice says about me. You know I’m a Black Forest Ham girl so I thought I would be really boring* but I actually love to travel and meet new people**. On the other hand, it says I love sushi, so we’re going to have to talk validity about these quizzes tomorrow. Ok love you bye”.
*Why did I assume a Buzzfeed quiz would tell me I’m boring if I know I’m not boring?
**I already knew these things about myself.
So that’s how post-meds are going. I have a follow up today in Austin where I will talk to them about this but I have a feeling I’ll be told to take my steroids earlier and stay off Buzzfeed. They’ll probably encourage me to lay off the murder mysteries. UGH- a girl can’t have any fun around here!
As always, thanks for reading. Meet back here Monday for less facts and more emotions.