It started in July of 2021. I had just qualified for Medicaid because my new business did not make money its first year. Previously I was paying an outrageous amount of money monthly for independent insurance and realized, with my new insurance I would be able to get a mammogram. I was going on two years of not having a mammogram because even with my private insurance, I couldn’t afford to get one. I also realized I had not done any self-exams in a while. No reason, I just hadn’t thought about it. So, I laid down and there it was…a hard lump that did not feel like anything I had ever felt before. I knew it was cancer. I knew I needed to get it checked out as soon as possible and that is exactly what I did.
Doctor appointments fell into place quickly and I had a mammogram scheduled in days. I had the regular mammogram, then stayed for the sonogram, then I waited to speak with the radiologist. She knew by the growth pattern it was cancer. Things moved quickly after that. I met with the surgeon, plastic surgeon, and oncologist. Surgery was scheduled in September. I had about a month to get ready. Before the diagnosis I had a plan for my business that year. I was marketing my tables at art festivals all over the area and had already paid for tent spots. This was supposed to be my last year doing the festivals. I was supposed to have enough business by the end of the year that I didn’t need to work them anymore. There was so much to think about. I have two children, two big dogs and a cat. I don’t have family in the area, but I do have friends. I knew I was going to need to reach out and ask for help. I did not know what sort of response I would get.
Testing was done on the tumor and it was Invasive Lobular Carcinoma. This type of cancer does not respond well to chemotherapy. As long as it was not outside of my breast, I would not need chemo. From what the doctors could see, the tumor size was on the border of needing a mastectomy or lumpectomy. I felt a mastectomy was best for me. I do not have the cancer gene, so I would only need a mastectomy of the left breast. I posted an announcement on Facebook explaining my situation and let everyone know I was going to need help. I had had surgeries in the past, but I had never had a part of my body amputated and that was difficult to wrap my brain around. I had no frame of reference for what was about to happen to me. But my friends rallied around me. I had support going to all of those initial doctor appointments.
I decided I wanted to document my body throughout my “journey with cancer.” I wanted to take pictures before surgery, after amputation and after I was healed. A friend took some gorgeous pictures to start the documentation. Covid -19 was raging at the time and my immune system was severely compromised. I felt like I needed to work as much as possible before surgery but going to art festivals was no longer an option. Friends bought some of my tables and asked me to work my magic on some of their furniture. This kept my mind and hands busy while preparing for surgery. A sign-up sheet filled up with friends that volunteered to bring me food and walk my dogs. I felt the care and concern from the people in my community and I was able to go into surgery knowing I would be looked after. The surgery itself went well. They were able to get all of the cancer out but the tumor was a little larger than was seen in the imaging. That was unfortunate but also made the mastectomy the best decision. The cancer had already spread to my lymph nodes, so I was graded at stage 3 and my treatment was going to be more extreme than we had originally hoped. I would need chemo and radiation. On the bright side, my plastic surgeon was able to reattach my nipple, which was a complete surprise.
During the next couple of weeks my friends stayed with me at night, helping me clean the two drains coming out of me, go to the bathroom and change my clothes. They came to drop off food, walked my dogs and cleaned my house. I had to have nitroglycerin gel put on my reattached nipple to stimulate blood flow and I needed help with that. I had a real hard time looking at myself while flat. I was flat for one week before they started filling in the spacer with saline. I wish I had documented that. I was supposed to start chemo pretty quickly so my plastic surgeon planned to fill the spacer a little more than usual each time so inflation would be done by the date chemo began. Friends came by and would help me go on slow walks but I had zero energy and was in pain all of the time. There were so many changes happening to my body it was difficult to tell what was considered a “normal” change and what was important enough to call the doctor after hours. Feeling awful was no longer an indication of a problem because I felt awful on a daily basis.
One day however, I had a fever. That was different, and though it did not seem possible, the pain was more intense. Any movement made the pain in my chest area hurt, even breathing. I ended up meeting my plastic surgeon at the emergency room. I was hospitalized for cellulitis and stayed in the hospital for around five days. I went home on 24-hour IV antibiotics and a home nurse checked on me every couple of days. Little did I know that this was just the beginning of complications and hospital stays. A month later I developed another infection and was back in the hospital. The spacer had started to deteriorate in my body and needed to be taken out and the implant put in. Chemo was postponed until this infection got under control and I recovered from another surgery.
At this point I was in total isolation. There were a few people I could be around that helped with day-to-day things, but my world was small and filled with pain. I couldn’t remember what it felt like to feel good anymore. So I reached out on social media. I knew I was putting my business out there, something I never wanted to do before cancer, but I needed something to help me get through those days. It helped to read encouragement and feel the love from all the people I could no longer see. It reminded me that once I was able to get out in the world again, I would still have friends.
Chemo began and that consumed my life. Getting treatments took all day. Each week was a different level of feeling awful until the end of the third week when it was time to go back for another infusion. I lost my hair quickly and my nails became discolored. Friends were checking on me, Smoothie King smoothies were the best when I could eat. It made me happy to watch my dogs get so excited when friends came by to take them for a walk on the V&E Greenline. I even had help wrapping Christmas gifts, which otherwise would have been given in the boxes they arrived. Treatments had to be postponed a couple of times due to health concerns but finally at the end of March I rang the bell. I had not been able to work in 7 months, so my friends asked to throw a fundraiser. Alchemy graciously agreed to have it in their space and many artists performed. It was amazing! I had been in isolation for so long it was wonderful to see everyone and feel their love. I still had radiation to get through and this gave me strength and encouragement to keep going. My community was there for me when I needed them, and I will never forget that.
More complications popped up in between chemo and radiation. A hole in my skin opened at the base of my breast. I was back on antibiotics and my implant was compromised. I needed another surgery. The implant was replaced, and I went home with another drain. When I woke up at my house the morning after surgery, I immediately knew something was wrong. Large clots were in the bulb when I was emptying the drain. That had not happened before. The size of these clots was scary, I knew the drain was going to get clogged from the inside. It was the weekend and I had had so many complications getting the on-call doctors in the past, the last thing I wanted was to have to call them. I called two of my friends who are nurses. They ended up coming over to use their skills to help unclog the drain. Unfortunately, nothing worked. I called the on-call doctor who was not fazed at all and told me I could wait till the next day to see my doctor. When I woke up the next morning, I was dizzy and could see the fluid had backed up into my chest and armpit area. No way could I drive. I called a friend to take me to my doctor appointment. While waiting to see the doctor I was so dizzy they had to get a wheelchair for me to make it down the hall. The doctor saw me and said we needed to go back into surgery to fix this. I was back in surgery the next morning with another friend coming with me.
Every time I would need another surgery that re-started the time I needed to heal before I could start radiation. I had a short window of time where radiation would be beneficial, and all of these complications were cutting it close. I would see my plastic surgeon every week to make sure this suture was holding. Unfortunately, it wasn’t. Every week she would use surgical glue and re-stitch the skin, then cover it up. I was wearing sports bras 24 hours a day; I couldn’t use my left arm and had to be extremely careful about any movement I made. The skin needed to be left alone to heal but it never did. This went on for weeks. The window of time for getting beneficial radiation was coming to an end. We decided the best thing to do was put a smaller implant in so there would be more skin to use to sew close. That worked and my skin began to heal quickly after this surgery. I was able to start radiation at the very end of that beneficial window.
I felt the effects of radiation right away. It felt like my skin was sunburned and the whole process triggered my migraines. Radiation was every day during the week. The sores and scabs started the first week of treatment and caused a lot of pain. Radiation treatment does not last as long as chemo and the side effects are different, but it can be just as intense. At the end of my month of radiation, I realized that since it was every day, I did not really feel the effects of it until after it was over. The upper part of my back was peeling where the radiation had gone all the way through my chest. The inside of my body felt like deep bruising as if I had been punched over and over. I would be talking to someone and would fall asleep mid conversation. Receiving radiation may be easier than chemo but the recovery can be just as hard.
At this point, it had been a year since I was able to work. Friends were ready to help again and put together another benefit at Dru’s Bar. I had enough time to recover from radiation and was able to visit with so many friends I had not been able to see in so long! It was just what I needed to wrap up my cancer treatments. My community showed up, one more time, to remind me of the love they have for each other. I never questioned whether I would survive this. When things got dark, I would post a message on social media and would get the encouragement I needed to stay strong for another hour, which turned to days, then weeks. I will be forever grateful to everyone that gave their time, love, energy, money and yes, thoughts and prayers. It took a village to help me get this far. Thank you, thank you, thank you all.
