Today, is national PTEN awareness day. July of 2016, is when we finally had Genetic testing done to officially see if I had Cowden syndrome. More than likely we knew that the results where going to come back positive because when we went down the the list of criteria. I marked off almost every signal one.Hearing the news was sad but at the same time it also brought answers to my entire health history. Life with Cowden syndrome is very stressful because there are many doctors appointments, scans, and surgeries. People with Cowden syndrome also have a lifetime risk of developing different types of cancers.

For me, they wanted to start early screening for breast cancer because I already had my thyroid taken out at the age of 18 years old. Due to having many nodules and a very large gourder. Sadly, during this time I ended up discovering a lump on my left breast. I didn’t know if it was cancer but I did have this feeling that I need to get this lump checked out. I eventually diagnosed with early stage of breast cancer known as DCIS in both of my breasts at the age of 25. Let’s say there was a mixture of different emotions when I was told the news that I had breast cancer. Sadness because I was young, happy that it was caught early before it can turn into invasive DCIS and then anger because the medical staff first told me “it’s a fibroid, very commonly seen in women your age”. They also would also say “you do not have cancer”. Even before and during the process of getting my biopsy done.

When I think about my life with Cowden symptom, I see power, strength, and determination. Along with the strength, I do honor the scary moments that this rare condition comes with but I do not let it take over my life anymore.


Feeling Comfortable 🏥

Most people are scared of the hospital, doctors, blood and maybe even the site of needles. All of this is quite common to be scared of, for me, it’s a huge part of my life. There is something comforting about the hospital. I know that I’ve talked about this before and I truly see the hospital as a second home and I am okay with that. Yes, it sounds completely strange to say that but when you get to know more about me and my story. It totally makes sense that I would feel this way. I do not want to be there, I do not want to have MRI, thyroid levels checked or constantly seeing doctors. It’s all part of my life journey with cowden syndrome, epilepsy, and Lhermitte–Duclos disease.

Northwestern Hospital is my Home, my community of amazing doctors, nurses and staff. I’m so happy that we made the decision to follow my neurosurgeon to Northwestern three years ago. All of my doctors, genetic counselor, and epilepsy social worker have done such an amazing work, they always check up on me(even on their days off/late nights), they even communicate with each other/talk about me and my care. This is why I feel so comfortable and relaxed at the hospital because I not only accept this hard life journey with many complicated medical conditions. I also love challenging my medical team and keep them on their toes. Lastly, I’m very interested in the medical(world) so I want to learn as much as I can and ask any question about my medical care. Even though these feeling of comfort at the hospital and around doctors is strange. I have even been told, “that’s so wearied”. Yes – but not for me and my life. I have also been told multiple times by a variety of different doctors “we do not get patients like you”. Well, I think that’s it for this blog post because now I’m just rambling on.

Just checking in

On my way to work, I find this very interesting. Yesterday when I was leaving for work I saw on the forecast that there might be rain or a mixture of snow and rain. Either way, I knew I had to bring my umbrella.

Today, I did the same thing. Checked the weather and saw rain/mixture of snow was going to happen. For some reason, I completely walked out of the house with out an umbrella and the wrong shoes to get wet. Remember that umbrella might come in handy wasn’t untilI was a few blocks away from my house. I could of turned back but then that would make me late for work. I was just like, really Kaitlyn. You were all prepared for the weather yesterday but today is a different story. I know this was not exciting at all, I have to get off the bus very soon. So I have to go.