I feel like a_Circus Performer

This week/months I have been feeling like a circus performer, especially the ones that have to juggle while balancing on something small. August 11,2016 is when we finally heard from the genetic testing and even though we did have a strong feeling that I also had Cowden Syndrome. Truly hearing the positive results for PTEN gene malformation/Cowden Syndrome was quite hard.

Dealing with doctors, changing health insurances, looking/scheduling doctors appointments and overall figure out this entire process was very overwhelming. Right now, while I finish writing this blog post, I was up at 6am to get ready for a long morning at the hospital. I was able to get into North Western Hospital to see a breast specialist and to get an ultrasound down on a lump I found. My mom and I didn’t get out of the hospital by 12pm, then we had to rush home to clean the house and order food for a meeting at 6pm. Then on top of this, I’m applying for a job, finishing up a graphic design job and along the way making mistakes.

Now, it’s 10pm and a freelance graphic design job has been fixed and sent to the printer for the client and now I’m ready for bed but it’s so hot in our house. I have to keep telling myself, that’s I’m only human and there will be times that I make mistakes but I can’t get myself down and I just need to keep moving forward. This is definitely one of the hardest things for me because my mind keeps wanting to think of the mistake/people that I anger. That’s why I wanted to finish writing this blog post because this is a huge part of my life/mind/body and soul. Instead of keeping those thoughts in my mind from the mistake I did over the weekend, I want to write about it because it happened and not I can move on and learn from that mistake. This is another reason on why I have been feeling like a circus performer because when they are performing they also make mistakes and they can get angry at themselves and never perform again or learn from what went wrong so it will not happen the next time. Tonight/this weekend was my first performance(mistake) and now I have/will be learning from that mistake.

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1 Year_2nd Surgery to repair the Csf LeakĀ 

I know I talked about this in my last blog post but being today my 1year anniversary of my second surgery to repair the (CSF leak). All of sudden when I was taking heavy antibiotics through the PICC line in my right arm. I got very very sick and my head hurt all of the time. While I was relaxing and sleeping in bed, I felt in the back of my head where I had surgery to remove the tumor from my cerebellum. It felt like an egg, yes I said a large egg shaped bump. With out going into all of the details (check the last blog post). We ended up having to go through a 2nd surgery to repair a leak. The doctor originally thought stitches opened put but he informed us that something like that happens with in the fir few days and for me, it was weeks from the first surgery. Today is another anniversary (1year) from my second surgery. Once again I completely shocked the doctor and team because for some reason a whole formed right next to the area that I had surgery. When he came to visit my room, the next he informed us of this information and I asked “would this of happened because I was on the antibiotic??” He said, “I honestly not sure why that happened but don’t think to be on antibiotics would make a whole in your dura-layer. Once again, I was a complete medical mystery or as my doctor likes to say “you are very unusual”. I just wanted to write a quick update/celebration for my 1year anniversary from my second surgery.

Results_Cowden syndrome

Yesterday was the day when we finally received the call from the cancer genic counselor at North Western Hospital here in Chicago. Even though we knew that I might have Cowden syndrome but finally hearing result/outcome was hard. My mom and I were both definitely sad, angry and scared that once again I will be facing many more challenging and unusual obstacles but like what my mom said, “this does not mean it’s the end”.

I see my Cowden syndrome diagnose is only just the beginning of my journey, life, and future. Throughout my 24 years of life, I’ve been fighting and facing many challenging obstacles, not just with my health but also through education. There have and will always be those times where I want to give up or just have a break from this life but at the end of the day, I’m honored to live this journey and yes it’s extremely hard but I do believe there is a reason for God giving me this life/health/struggle/differences/epilepsy.

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