As you may or may not know, I am a breast cancer survivor. It’s a big part of my life story, and on this day, the day that marks me as three years cancer-free, I thought I would share my story with you.
Back in February of 2015, I went in for a routine Pap. At the time, I was nursing my then 5 month old son, and I had noticed a lump in my left breast. I said something to my doctor about it, and she examined me. This was my second child, and I had been unable to nurse my first, and admittedly, I wasn’t really that knowledgeable about nursing and it’s related problems that can sometimes occur or how long it would take for them to clear up. Additionally, my baby had pretty severe reflux. No one was sleeping (well, maybe my oldest because that kid could sleep through a sonic blast), my baby was in pain all day every day and we were in the middle of trying to figure out what the best combination of diet, formula, and medicine was for him. As a result, he was the priority, and whatever nursing problem I was experiencing had to take a back seat. So when the doctor considered that I was young, healthy, and a nursing mother, and said it was most likely a blocked duct, I put it out of my mind. There was no instruction to call back in a few days or weeks if it hadn’t cleared up, just directions on how to try to relieve the blocked duct. Try as I might, my efforts were in vain. I thought maybe it was just there to stay and would clear up when I stopped nursing and the milk dried up. Again, I put it out of my mind so that I could focus on my baby.
Fast forward to July of that year. I had stopped nursing a couple months before, and now that I had allowed time for the milk to completely dry up and my lump was still there, I knew it was time to go back to the OB/GYN. We had finally gotten my son’s reflux under control and for the first time, coming out of that fog, I knew at this point it was NOT nursing-related anymore, and I firmly believed that it wasn’t benign either. I saw the nurse practitioner, who performed an exam, and was concerned enough to send me for an ultrasound. Those results led to a mammogram, which then led to a biopsy of my lump and a lymph node under my left arm. Then, The Call.
As we sat there in the breast surgeon’s office after she explained the biopsy results and gave me my official diagnosis, I looked at my husband and said, “well, at least you’ll get those bigger boobs you wish I had!” (a running joke between us because I was so small chested) I was officially diagnosed July 21, 2015 with ER+ PR+ HER2+ Stage IIb invasive ductal carcinoma, which was thankfully one of the most treatable kinds. (After my mastectomy, when they were able to see how big my tumor actually was and biopsy it, I was upgraded to Stage IIIa, yay me!)
I had a port implanted in my chest to make receiving treatments easier (a true miracle invention, that tiny little piece of plastic and tubing), and on August 12th, I started my 6-round treatment course of chemo: Taxotere, Carboplatin, Herceptin, and Perjeta, or TCHP as its know in the oncology world. I was to receive one treatment every three weeks. My first two treatments were pretty rough. I was pretty much bed-ridden the entire first two weeks of the first two cycles, with maybe only a handful of days that I felt well enough to venture outside of my house at all.
During this time, my oldest son, who was four at the time, had just started preschool. So it was no surprise when he brought home the flu one day. The whole family got it in turns. It wasn’t long after my second treatment that I came down with it. My white blood cells and neutrophils were so depleted from chemo that my husband rushed me to the hospital to find that my levels were so low that it was emergent. This meant about a week’s stay in the ICU, lots of antibiotics and antivirals prescribed by the infectious diseases doctor, many shots to bring my neutrophils up and boost my white blood cells, and catching C diff. Killer flu, anyone? Sorry, I have a dark sense of humor. Near death experiences will do that to a girl ;).
Once I recovered from that, it was apparent that my youth wasn’t working in my favor to keep my neutrophils up during the course of treatment, so my oncologist added the Neulasta shot to my treatment routine, which was a game-changer for me. I was still sick as a dog, but it lasted only 10 days, give or take, instead of almost the full three weeks. I was able to participate in my son’s first field trip and other firsts associated with school for him, and I was able to experience some of the firsts for my youngest, including his first birthday party, a Little Gentleman theme you can read about here. 🙂
Once chemo was completed, surgery was scheduled. I had a bilateral prophylactic mastectomy (which means both breasts were removed even though only one had actually had the tumor), and tissue expanders were placed so that we could start the reconstruction process. That process included a series of “fills” that started only a couple weeks after surgery. One of the funniest parts of this process was the look on my husband’s face as he watched the plastic surgeon literally pump up my boobs. Since it was a visible increase as the saline was injected, I’m pretty sure I had just made his day. At least we got something good out of all of this mess, considering I got to choose bigger boobs than the previous models haha.
When the fills were done, it was time to see the radiological oncologist to begin radiation. This was a targeted radiation that required me to be fitted for a mold that I would lay in during treatment and three tiny little tattooed dots on each side and the middle of my torso to ensure that I was always in the exact same position each day. I had typical burns and side effects of radiation, but honestly, not as bad as it could have been. So while I seem to have a perma-tan in the shape of an oddly proportioned rectangle across the left side of my chest, the surface side effects were pretty minimal. Although, when people ask me if I have tattoos, I’m never really sure how to answer them. Do I include the three tiny dots, or not?
Several months passed to allow the tissue to heal from radiation, then I went back under the knife for my final implants. Sadly, a few weeks after the surgery, while visiting family in Indianapolis for Thanksgiving (2016), I had a fever for a few days before redness started to appear around my left breast. A trip to the Urgent Care and a quick call to my plastic surgeon led us to the conclusion that I had an infection. Antibiotics were prescribed, but were ineffective. It was only getting worse. After truncating our visit with family to head back to Saint Louis, we met with the plastic surgeon that Monday morning and once again, I was admitted to the hospital. Do not pass Go, do not collect $200. He wanted to see if IV antibiotics would be able to quell the inferno. It’s worth mentioning that my port was removed when my final implants went in a few weeks prior. Also, because I had lymph nodes removed from my left arm, I can only receive needles in my right arm and I have super tiny veins. The antibiotics coursing through my vein at the IV site was so painful and ended up blowing the vein. They were unable to re-insert an IV, even though they tried and tried and tried and tried and tri…..you get the idea. It was all for nothing.
The next day, the plastic surgeon said that the left implant had to come out. I was devastated. I was questioning the wisdom of even trying to attempt further reconstruction. I pretty much had a melt-down on my poor surgeon, who I have to say was absolutely wonderful. We removed the left implant, then had a PICC line inserted for IV antibiotics at home. I walked around with a single boob for a while, then once there was no more sign of the infection, we discussed a second attempt at reconstruction. The tissue on my left side was so damaged by the radiation that there was no healthy tissue to adhere (not the right word, but I’m drawing a blank) the implant to, which was why the previous implant was rejected. If we wanted to pursue reconstruction, it meant a Lat Flap reconstruction, taking the latissimus muscle from the left side of my back, wrapping it around to the front, then placing the implant under it so that it has healthy tissue to adhere to. This is kind of a big deal, and was not the easiest surgery to recover from. It meant weeks of physical therapy and permanently limits me from doing some things, but thankfully, nothing essential.
Thankfully, the lat flap reconstruction was a success, PT restored strength and mobility to my left arm, and FINALLY I was done. Well, mostly. Now, it’s the #fightafterthefight. I had several lymph nodes removed during my first surgery, which has caused occasional flare ups of Lymphedema. If it gets bad, I have this super cool space suit I wear for an hour that will help pump the lymph fluid through my body. I take a daily medication (Femara) and receive a quarterly shot (Lupron) to keep my estrogen levels down even lower than most post-menopausal women, and those meds come with their own host of side effects that have really made me redefine “normal,” but what matters is that I’m still here. I’m able to experience those firsts with my boys and watch them grow up. I’m able to tell the ones that matter most that I love them every single day. And most importantly, I try to live each day to it’s maximum potential.
Cancer wasn’t all bad. I made some new friends; I made some cute cancer hats for myself; I received visitors from far away that I don’t normally get to see on a regular basis; I had lots of time to catch up on books; I got bigger boobs; and there was a huge outpouring of love and support from family and friends near and far.
If there’s anything I’ve learned from this experience, its the following. First, be your own advocate. Ask the questions and demand answers. Don’t settle for should-be-fine or I’m-sure-it’s-nothing. And take care of yourself, or you won’t be around to care for others. And second, live now, right now, this moment, because you just don’t know what tomorrow will bring.
PS: if you would like to get the full details on my experience, I kept an online journal / blog of sorts as a way to keep friends and family informed and to help someone else who may be going through the same thing. The first post can be found here. If it can help even one person, it’s worth baring it to the world.