Remember when I wrote a post in the beginning of 2019 about how I was going to crush it finding the best tacos in Pittsburgh? I began the year by publishing my taco ranking system and working on data entry for ranking each Pittsburgh taco I have had the pleasure of eating. I was on a roll until something very big took precedence over everything else.
I am now at a point where I am ready to share with my taco loving friends what I went through this past year when I wasn’t eating tacos. I want to start by saying that 2019 was NOT my year and it really gave me a fight for my life. I was extremely emotional New Years Eve, as I stared at the countdown for 2020 on TV. Tears filled my eyes because 2019 was by far my hardest year both emotionally and physically.
Even though the hardest parts are behind me (hopefully!), as the New Year begins, certain dates and emotions are now cycling back. Some dates will be forgotten down the road, while other days will be celebrated. Let’s start with January 4th, 2019.
On January 4th, I did a self breast exam before going to bed. I found a tiny little pea-sized lump and immediately began to cry. I thought there is no way this could be the worst case scenario at the age of 29. But something inside me told me to get it immediately checked, especially since my mom survived breast cancer. My mom’s breast cancer was not genetically linked, but I did not want to take a chance, so I called my doctor.
Within two weeks, my doctor ordered me a breast ultrasound and mammogram. Both ruled out a cyst because it was not fluid-filled. I was then ordered an ultrasound-guided biopsy of my left breast. On January 30th, I got a call from my doctor stating that I had cancer – invasive ductal carcinoma, strong estrogen and weak progesterone driven. I broke down completely. The word invasive scared the crap out of me and I had no idea the severity of the stage, tumor size, or if it had spread. My entire world seemed to be shaken within seconds. I will never forget where I was standing when I got the call or where I phoned my best friend screaming “why me?”. I was so scared I would lose myself and identity in the following months. My mom and close friends provided vital support during the news stage. They reassured me we would get through it together. Although my head was spinning out of control, I tried my best to just focus on getting more information.
On February 8th, I got an MRI and the results came back the very next week. I cried in joy when I found out the cancer was predicted to be stage 1 with the same tumor size that was seen on the biopsy. As a warning, breast MRIs pick up everything and an oval lesion was found on my opposite breast from the tumor. It turned out to be nothing after a second MRI. I celebrated small victories during each phase of my battle. Actually, I remember getting tacos that night at Jose and Tony’s for National Margarita Day.
The next thing I had to determine was if there was a genetic link to my breast cancer, since I was diagnosed at such a young age. On February 18th, I got the results back from genetic testing. I do in fact carry the BRCA2 gene, which was the cause of my cancer. I didn’t really know what I wanted the test results to be. If they were negative, it would have been scary not knowing what really caused the cancer. Many thoughts went through my head. Could all the tacos I’ve ate over the years be a contributing factor? Maybe the environment or stress were linked? Also, the decision to do a lumpectomy vs mastectomy would have been harder to make, if the test resulted negative.
When I got the call from my genetic counselor that I was a BRCA2 carrier, I sobbed. I cried because I knew what surgery was ahead of me, if I wanted to reduce my chance of recurrence in the future. I was not mentally ready for a double mastectomy with immediate reconstruction at the age of 29.
At this point, all of my background tests were completed and I now had to put trust in my breast surgeon and plastic surgeon to get the tumor out of me and safely carry out the planned procedure. My 8 hour intense surgery occurred on March 8th.
After my surgery, my breast surgeon reassured my family that everything went well. However, my plastic surgeon came out of the OR in a frantic state. He told my mom and dad there was a chance my left implant would not hold. During the entire month of March, I learned more about wound care than I ever thought I would need to know. From use of a pico vacuum, bacitracin, nitropaste, medihoney, to proper wound dressings and surgical drain care. This was a difficult time for me, as I battled skin necrosis for an entire month. Unfortunately, on March 27th, I had to go back into the OR and have my left implant removed. Despite another OR trip, I did have one good piece of news from my breast surgeon; my cancer did not spread to my lymph nodes and the margins for tumor excision were clear. This was great news! I was cancer free! However, I was not able to celebrate the good news for very long. On March 18th, I got my results back from my Oncotype DX test, which based on many factors, rated my risk of recurrence as high. I now had to get adjunctive chemo to lower my risk of recurrence and to make sure no cancer cells broke off and were laying dormant in my body elsewhere. I quickly began the process of learning about drug side effects and how to make myself feel normal during chemotherapy.
You may know this by now, but I am an extreme planner. By the next day, I wrote five pages of notes on how to tackle chemotherapy and prepare myself for treatment. Below are some of my To-Do Lists from my research:
- Things I had to take care of prior to chemo: order products listed in #2 I researched from reading many blogs, schedule a dentist visit, make appointment to have eyebrows microbladed, get a hair trim, understand and reach out to Penguin cold caps about using cold capping to save my hair, research wigs as backup, start IVF therapy, schedule a port placement surgery date, pick a chemo regimen with my oncologist.
- Products I ordered: Sojourn moisturizing shampoo, Sojourn detangler, Amica leave-in conditioner, Lavish Lash eyelash and brow serum, fake eyelash kit with glue, Sephora face nourishing moisturizer, Farmacy makeup remover, natural deodorant, Cerave body lotion, silk scrunchies, satin pillowcase, wide-tooth comb, Biotene toothpaste, soft bristle toothbrush, Anastasia Brow Wiz eyebrow stencil pen.
- Chemo day tips: wear comfy clothes, drinks LOTS of water (I used an electrolyte packet in some of the liters I drank), put emla numbing cream on port one hour prior to use, bring an electric blanket, make and use a baking soda and salt mouthwash rinse.
I told you I did a TON of research. However, one part of the process I had little time to investigate was in vitro fertilization (IVF). I do not know if I want kids in the future, but I did know that I didn’t want breast cancer to make that decision. Any time I had a chance to take control of the situation, I sure did.
Little did I know, IVF consisted of 2-3 injections into the abdomen daily, blood draws and ultrasounds every other day for 2 weeks, and another OR visit April 15th for egg retrieval. Oh, and horrible stomach pain and bloating for over a week straight after retrieval.
Another part of preparing for chemo was getting a port placed in my arm, which occurred on April 30th. My cancer center treatment team did not like the idea of an arm port because there was an increased risk of an extremity blood clot, but I strongly stood by my decision to have the port placed in my arm, instead of my chest. I DID NOT want another scar on my chest, nor the risk of a needle lung puncture with a chest port. I did have a swelling scare towards the end of my chemo treatments, but the swelling was caused by trauma from at least 30 blood draws in my right arm from the beginning of April.
On May 7th, I started my two drug chemo regimen. I underwent four rounds of chemo, with the last treatment occurring on July 15th. After each round, I endured flu-like symptoms, blurred thinking (“chemo brain”), hot flashes, altered taste (don’t worry, none of the tacos I blogged about were around treatment days), severe bone pain, liver enzyme elevations, and hair shedding (but not loss!).
Side note: this is what the cold caps look like. With my rental order, I got four caps, four headbands, two black straps, one gold strap for my thick hair, thermometer, timer, and gloves. Each cap went on at approximately -33 deg C and had to be exchanged out for another cap every 25 minutes over an 8 hour period! The capping process was followed during each of my four visits for infusions. In between treatments, I followed a very strict hair regimen.
After I finished adjunctive chemo, I had to give my body a month to recover. I am currently still suffering from chronic fatigue that can last up to a year after completion of treatment.
After giving my body some time to heal, I underwent another major surgery on September 6th, at Johns Hopkins in Baltimore. I sought out a new plastic surgeon during the chemo months because I could no longer trust my previous surgeon. My ex surgeon’s plan for the next surgery did not match what the doctors from UPMC and John Hopkins suggested. Also, my ex surgeon told me to shave my head because capping wasn’t going to save my hair. He told me I would have life long discomfort and pain if I went with the latissimus dorsi flap reconstruction surgery at Johns Hopkins. He told me I could not wear a backless wedding dress because I would have a 7 inch scar across my back with the lat flap reconstruction. He was a bully and I’m glad I found the inner strength to stand up and tell him off.
After having the failed surgery in March and dealing with the previous surgeon, my mother and I had a hard time trusting another doctor. Because of this, I questioned one of the most experienced doctors at Johns Hopkins. Even the scheduler thought I was nuts, as she said people all over the country seek out the surgeon I had at Johns Hopkins.
Nevertheless, I went ahead with the surgery at Johns Hopkins. I cried in my mother’s arms in the preop area when the surgeon’s resident started to put marker on my body to show a general idea of what was going to happen in the OR. I was absolutely terrified to go through a second major surgery. I knew I would have to go through the post-op pain, slow recovery, and surgical drains again. Just hopefully no necrosis.
My new plastic surgeon was a miracle worker. I had one last major surgery December 11th and will have one more surgery sometime in 2020. Although my body will never be the same, my doctor made me feel as complete as physically possible.
Because of the loss of back muscle from the latissimus dorsi flap reconstruction, I now undergo many hours of physical therapy to gain my range of motion back on my left side. It took me over a month after the September surgery to even sit comfortably.
After the surgery in September, I was placed on an oral medication to keep me disease-free for the next ten years and a monthly injection for ovary suppression for the next 5 years. The needle is freaking huge for the monthly injection. It is way worse than the needles used for IVF. Although these medications are crucial to prevent recurrence, it has been hard on me to accept the changes to my body, at this age, without having as much estrogen now. I constantly have hot flashes, which my oncologist and I are trying to manage. Additionally, being a BRCA2 gene carrier puts me at a higher risk of ovarian, skin, stomach, and pancreatic cancers, which requires a lot of monitoring.
To help prevent recurrence, I also tried to clean up my diet throughout the year. You may see more vegetarian tacos in my posts, but nothing will stop me from treating myself to any taco I want in the future.
As I continue my recovery, I’m still dealing with some pain points. In December, I developed pain in my wrist and elbow which is from lymphedema. I am now working on managing those pain flare ups, in addition to gaining my strength back from the six OR visits in 2019.
During my journey over the last year, I learned many valuable lessons. I learned to take one step at a time, to get multiple consults, trust your gut, ask for help when needed, and accept assistance when offered. A lot of the decisions I had to make were not easy, but I knew if I wanted to get the most out of this life, I had to roll with the punches (and my 9 new battle scars).
I also want to take the time to thank my friends and family for being my backbone throughout the year. My mom came to almost every appointment (I had up to 6 appointments a week). My mom, Hillary, and aunt cooked many meals for me post surgeries and rounds of chemo. Hillary vamped up my house cleaning supplies, helped cap during chemo, and came to almost every surgery. Hillary’s husband, Mark, assisted me with anything needle related, including IVF injections and Neulasta patch removal. Alexis, Steve, and my Mount Washington neighbors came all the way to my parents house multiple times to keep me busy when I was stuck in bed. My coworkers sent me baked treats and gifts, and Robert, Melissa, Erin and Wendy took me out to lunch several times throughout the year. Ben and my dad drove my mom and I to long distance appointments. Carolyn answered my calls during break downs. Julia’s blunt words of wisdom and care packages made my days. I had endless cards and prayers sent by friends, family, and coworkers the entire year. I cannot stress how important it was to have a support team. I had the best crew in the world.
This post is quite long and detailed, but I wanted to share my journey for two main reasons. The first is awareness. I was only 29 years old when I was diagnosed. I was active, healthy, and young, but it happened to me. I cannot stress the importance of self checks enough. Do them! The second reason is for guidance. Just like with the taco blogs, I went into extreme detail here because I want to help people who are just as stumped as I was when I was first diagnosed. I turned to many blogs for guidance, so maybe my detail will help someone out there. I already helped another survivor who sees the same oncologist save her hair!
Now what does 2020 have in store for me? Good health, multi-day backpacking trips, bicycling trip to Maryland, family trip to Poland, girls trip to San Antonio, Pittsburgh Relay Marathon, Race for the Cure, work as pharmacist, one last OR visit, and, of course, lots and lots and LOTS of tacos.
With much love from your Pittsburgh taco lover and breast cancer survivor,