Late 2019, I found a lump in my right breast. I called my doctor, but we decided to wait until my yearly exam in February of 2020.
Come February the lump felt bigger, but my doctor was not concerned about it and said to me “it doesn’t feel like cancer, so it is up to you whether you would like to do a mammogram”. I was not worried about it when she reassured me. You see, I am a Type 1 diabetic so, we just assumed it was scare tissue where my omnipod was inserted in me most of the time. But ultimately since I was 40, I decided to go ahead and just have a mammogram, to at least have a baseline.
I will never forget that day, I started the mammogram and after I was completed, they sat me out in the little waiting area (they didn’t let me go). Then, called me back in to look at something a little closer. Same as before, they sat me back in the waiting area. Then, after a little bit of time, they brought me back do an ultrasound. I was starting to get nervous, but never did I worry about it being cancer. After the ultrasound, a gruff older gentleman came into the room (keep in mind I am by myself) sat down and just stated “you have cancer, any questions”. Did I have questions??
I couldn’t even wrap my head around it; he went on to tell me I have all 3 markers and a biopsy would be next. I held it together until I got in the car and then cried all the way home, it was the worst Friday afternoon and weekend, especially trying to keep a happy face for my kids. All the worst-case scenarios spun around in my head.
After the biopsy things were starting to be put into place. Keep in mind, COVID is just ramping up. My first meeting was with my oncologist, because Covid guidelines were just being set, I could not have a support system with me, or on a call with me. It was so much information to process and then try and regurgitate over and over to my family. It was like learning a new language.
There was a ton of lag time, so my oncologist was upset that I still hadn’t heard from my surgical team. Everything was taking longer than expected because of COVID. My oncologist was great, and we had about 3 different scenarios on my
treatment, depending on what surgery times and hospitalizations looked like because of Covid. I finally got to meet the surgeon (alone again), we decided on lumpectomy and radiation. This was a quick decision and hard to make without anyone else hearing or supporting my decision currently.
My situation becomes much more complicated in the coming weeks. We always knew it would be harder with Type 1 but throw Covid in the mix and now the surgery board has to meet to see what cases they will allow. In the meantime, I am going into the hospital a lot by myself, and it is eerily quiet and a lot of protocols to follow. It would make anyone nervous.
April 14th is another day that really stands out to me. I got on a zoom call with my geneticist and found out I carry the Check2 genetic mutation. This changed everything. So, back to all my doctors (alone) to make more life changing decisions. There were several decisions made in those coming days. I would now have a mastectomy on my right side and not do the left until later. This decision must be made this way because of Covid and my Type 1 diabetes. They are only doing necessary surgeries currently.
So, I knew I now had At the very least, 3 surgeries ahead of me, just for my breasts. Everything was changing minute by minute and trying to make those life altering decision in the midst of a pandemic all by yourself is hard. Check2 is rare and they are just studying it, so most of the decisions were left up to me and making those in a 30-minute appointment alone is hard.
The day finally came for surgery on April 29th. It was an interesting day. It had been up in the air if Darrell (my husband) could take me and see me. Ultimately, that morning the hospital decided he could do pre-op with me and then see me for about 2 minutes after surgery while they wheeled me to recovery. He could not go to my room or be with me for support. I had never had surgery before, so I was terrified of being by myself for a couple of days in the hospital. Surgery went well and after a couple of days I was able to see my family again when they picked me up curbside.
The next journey for me was Chemo. In covid times, this even looked different. I was extremely nervous. You could not have a support person. My mom dropped me off and I walked in all by myself again. I was supposed to start my regimen that day. They hooked me up, put my cold cap on, and started the chemo. No more than 2 minutes in, I started having an allergic reaction and began to go anaphylactic. It was the scariest moment I have ever had in my life, lots of people working on you, not being able to breath, and to be all alone with no one I knew with me.
They were able to get me back stable and then about an hour later wanted to try again now that I had tons of steroids etc in my
system. Reluctantly, we tried again and immediately went back into an allergic reaction again. We quit for the day, and they sent me on my way alone to go meet my mom waiting to drive up and get me. She didn’t even know what had happened to me. Needless to say, it took me a couple of weeks to recover, not only physically but mentally.
A few weeks later the doctors wanted to try again with a different type of chemo. I was so scared. I was still going to all my appointments alone and it was hard for me to advocate for myself. I then decided that if we had to try again, I would only do it with a support person. The hospital gave some push back, but thankfully my oncologist pushed hard enough that they then agreed.
We would just have Covid precautions put into place. Even with a Yes, it was hard to get Darrell into the hospital, upon what was already stressful and terrifying, I was not going to go in without him. Finally, after some time, we got it figured out and tried again. It was the same result as before; it just took a little longer to react. Thankfully, Darrell was there with me and calm me back down. I had a lot of residual effects for the coming weeks. I also ended up with fevers and UTI due to the side effects-try being hooked back up to an IV in a room where you have gone anaphylactic 3 times, it was not easy-again all alone. Chemo was now off the table; they were worried it was doing more harm than good.
Next up, my left side. I made the decision to prophylactically have a mastectomy on that side due to the genetic mutation. Again, all this decision making is in office, by yourself. So hard to process all the data and make a quick decision alone. Surgery and recovery went well, and another expander was put in.
I just finished reconstruction and am doing my monthly injections, taking medications, and will be removing my ovaries in the next month. We are watching closely with the genetic component; I will have a lot more screenings.
I am just now starting to process my journey. With Covid, there were no support groups at first and now most are zoom. I am working on finding the joy in each moment and am trying to spend as much time as possible with my family. Please remember to do your monthly checks, and no matter your age, please follow up with a mammogram, we could have caught mine earlier.