Knikki

Diagnosis

Breast Cancer

Physician/Team

Lindy Rosal, MD, FACS

Time to Talk Openly, Honestly, and Candidly about Cancer

I was far from home when I learned that I had cancer. Nothing can prepare you for a breast cancer diagnosis, but my journey was further complicated by geography, language barriers, and COVID lockdowns. I’m proud to share my inspiring story.

It was 2020, and while I was working in Kosovo, I decided to schedule a colonoscopy because of my family history with the disease. I was nervous about it, but I figured that since I was already driving to Macedonia for testing, I might as well get a mammogram, too.

After my colonoscopy, I went in for my mammogram appointment. I wasn’t worried. I had no family history of breast cancer at all. However, when the scans were done, the doctor came in, took one look, and said, “Oh, this is not good. This is really not good.”

Not good? Really not good?

The doctor went on to tell me that she was ordering a biopsy, but judging by the scans, she was certain it was cancer.

I was not, in any way, shape, or form prepared for that response. I started crying uncontrollably. The doctor was kind, and she kept telling me, “No, no, no, don’t – we don’t even know what kind of cancer it is yet. Let’s find out what kind it is before you get upset.”

And I thought, wait a minute, cancer is cancer, right? I didn’t realize; I’d never done any research. I understand more now what she meant. There are so many different types of cancer and so many different types of treatments available. I had been panicking.

Two weeks later, I went in for my scheduled lumpectomy. When I woke up, I found out the government had closed the borders due to COVID-19 restrictions. It was absolutely surreal. I had to get the US embassy involved just to get back into Kosovo. But the bigger question was how I would get my cancer treatment if the borders were closed. There was only one private hospital in Kosovo that was doing chemotherapy at the time.

Although I was allowed to leave the military base where I was working, I was given a driver to take me to and from my appointments to make sure I got there safely. It was the middle of lockdowns, and I still remember that on the way to my first chemotherapy appointment, we didn’t see a single other car the entire drive. It was like having cancer during a zombie apocalypse.

Luckily, once I completed chemotherapy and was well enough for radiation, the borders were open again. I was able to travel back to Macedonia since there was nowhere in Kosovo that offered radiation treatments.

I was, however, terrified of losing my hair. My hair had finally grown out. I was so proud of it. I loved it. Looking back, that was one of my first thoughts: “I’m going to lose my hair.”

When my hair started falling out, I grew more and more depressed. I messaged one of my good friends and said, “I’m going to cut my hair.” He told me I should cut it while singing karaoke to Fantine from Les Misérables.” I was in a COVID karaoke group, so I decided to do just that!

I got on the internet. I started singing very earnestly, and then I got a pair of scissors. As I started cutting my hair, I began bawling my eyes out. I didn’t expect to be so emotional, but it was just so raw. So epic. In that moment, I didn’t just cut my hair. I cut it on television while singing Les Misérables.

I still have that video, so whenever I need a reminder of what I’ve been through, it’s on the internet forever. Not to mention, I didn’t look nearly as bad as I thought I would with a bald head. It was the middle of the hot summer. Immediate bonus: I was cooler than everyone else. Showers only took four minutes, start to finish. There were benefits. Losing my hair was part of the whole process, and it turned out to be just a really neat experience.

Going through all of this in a foreign country and during COVID was really interesting. Overall, I do feel like I got the best care a person could get in the area. In fact, the doctors in the US said they would have put me through the exact same protocol, so I’m exceedingly grateful.

As for the lockdowns, I can’t say that it was awful because when you’re going through chemo and radiation, you’re isolated anyway. We were in the middle of a pandemic, so you’re not going out; you’re not socializing. And the fact that I was ill was my saving grace during that time because my family and friends were constantly reaching out.

When I arrived back in the States, I found an oncologist to check my levels and keep an eye on my recovery. I had been thinking about breast reconstruction, but every time I would go to the plastic surgeon, he would say, “Your skin is leather. Your skin is not healed. Your skin is…” And 3 years after the end of radiation, he said, “It’s not going to work. It’s not going to heal. We can do it. We can try it, but I’m telling you, it’s not likely to work.” We talked through it, and he said the best option for me was a deep flap.

Now I’m not super vain, but I won’t lie, the surgeon in Macedonia did not do me any favors with how he left me. Nobody else saw it but me, but reconstruction still felt really selfish. It’s interesting how we can place that on ourselves, but it’s how I felt.

I talked more with the plastic surgeon and asked him to make my breasts even. At that point, he referred me to Dr. Rosal at Virginia Cancer Specialists.

I scheduled an appointment with Dr. Rosal, and when we met, I was immediately comfortable with her. She anticipated most of my questions before I even asked them. She didn’t try to make any decisions for me. She didn’t try to pressure me one way or the other. She said, “Look, here are the options. Here’s what we can do. Here are the potential consequences of each. Here are the benefits. We will support what you think is best for you.”

I called the plastic surgeon and told him to schedule the reconstruction procedure. I had been on the fence about it, but after I spoke with Dr. Rosal, I knew that it was the perfect time.

After reconstruction, I was relieved. Feeling whole again has really changed my outlook on how I see myself.

Truthfully, Dr. Rosal was amazing from the day we met in her office. From my pre-surgery visit to the recovery, and then again in the follow-up, she walked me through everything. In a follow-up MRI, I was worried, but Dr. Rosal explained everything. She told me, “This is what you’re thinking, but this is what it actually means. This is normal, and this is what we’re going to look out for moving forward now that you can’t have mammograms.” Then she walked me through the plan for the next 10 years.

10 years! The fact that we can think and plan out 10 years from now is a revolutionary thought. When you get a cancer diagnosis, you start measuring life in moments. And now, we’re planning out 10 years, 20 years. It’s awesome.

“When you get a cancer diagnosis, you start measuring life in moments. And now, we’re planning out 10 years, 20 years. It’s awesome.”

Through it all, one thing that helped me process my diagnosis, treatment, and recovery was when I shared my journey on social media. People often want to hide when they’re ill, afraid they’ll burden others. But you know what? After posting, I’ve had people reach out from everywhere – people whose sisters or mothers have been diagnosed and they just want to know more.

I tell them the same thing that I learned over time: cancer is not an illness like anything else. The treatments and the doctors are absolutely amazing. Don’t lose hope, and don’t be afraid to open yourself up to the community that’s out there. One in eight women will be diagnosed with breast cancer within their lifetime. So I guarantee, you’re going to know somebody who will have cancer, or you’re going to know somebody whose family is going through it. Your experience can make a difference in their hope, and hope is crucial to recovery.

For someone who isn’t on social media, there are a lot of support groups that you can join with people who are going through the same thing you are. Being able to talk through your experience with somebody who understands is incredibly validating. With my support system and peers, we were able to talk openly, honestly, and candidly in a way that not everyone feels comfortable.

 “Being able to talk through your experience with somebody who understands is incredibly validating.”

So whether it’s on social media, whether you find a support group, whether you’ve got a group at church that you can meet with, just having that team is important. That team. I always called them Team Knikki because that’s how I felt. I felt like we all went through it together. This was definitely a community effort.

Ultimately, I think cancer gave me an overwhelming sense of gratitude for everything – for every day, for every person, for every contribution that people make to my life. I don’t take anything for granted now. No one thinks that going through something so incredibly life-changing can be a good thing. But cancer has absolutely changed how I live my every day.

“Ultimately, I think cancer gave me an overwhelming sense of gratitude for everything, for every day, for every person, for every contribution that people make to my life.”

After cancer, I tend to be a lot more spontaneous because I know every day is a gift. I’ve become far more open-minded. Actually, I went to a heavy metal concert, and I don’t even like heavy metal music! Yet, it was one of the most fun things I’ve ever done. We’re making every day matter. And we’re enjoying every second of it.

I understand it’s hard to tell people not to panic – but don’t panic. When I was diagnosed, I was panicking. I want to tell people to hang on. Let’s get all the information. Let’s see what the treatment options are. Let’s see what stage we’re at, and then let’s decide what the right course of action is. And if you want to panic then, okay. But let’s get the business out of the way first.

Everybody’s journey is unique, and everyone needs different things as they go through treatment. Don’t be afraid; let people be there for you. I think a big part of my journey now is finding ways to give back, finding ways to volunteer, finding ways to get out there on the message boards and talk to people who’ve just been diagnosed.

I’m available to them because sometimes people just want someone who will understand what they’re feeling in those scary moments.

I hope I can give back one fraction of the support and love that I’ve been given on this journey. And I’m never going to stop talking about it.