Life can change in an instant
You will always remember the day, time and exactly what happened in a traumatic situation. The learning of a death, an accident or international tragedy...For example we all remember exactly where we were on 9-11, a diagnosis of illness to yourself or loved one, a surgery or seeing something horrible happen like a shooting, accident, etc. I remember everything tragic that has ever happened to me perfectly....too perfect maybe. Deaths of friends, family members, even those I never personally knew. 9-11, the LAS Vegas shooting and ugh the list goes on. :/ I remember them all and it can be so vivid it makes me burst out crying. Certain situations can be so traumatic it can cause PTSD and in my case it has happened and lately especially. It is not talked about a lot with cancer and most people have no idea the after effects. It wasn't just learning some bad news and then I would go in for a surgery, some treatments and then it will all be good and put in the past, right? NO. I tried that the first time and it wasn't as bad as it is now. Once a recurrence I think it gets way worse because you knew it happened once, twice and you will do anything to have it never happen again.
One day I remember so vividly and it's been non stop on my mind is November 16, 2017, 1 year from today. I went to UCLA for my routine MRI. I was going every 3 months but since I was in Portugal the whole summer getting married, celebrating my new marriage, my 32nd birthday and planning our honeymoon and fun future events AND since I had been "clear" for almost 2 years everyone agreed it would be ok to wait 5 months for this MRI...the previous was done June 20th (yes when you go through this you remember EXACT dates). Philip and I drove to UCLA and I had a high energy feeling that all was going to be 100% fine, not even a little nervous, I was fine, everything has been looking good so how could it change so fast, I was super confident. I had my list of questions which mainly consisted of planning the future of getting pregnant...by now you know, we cannot wait to one day have kids!!! :) I am on Keppra for seizure prevention and was concerned about the safety and side effects of getting pregnant while on it. Never did I think I had to question the safety of the hormones affecting me. All doctors knew I would one day get pregnant and never a word that is could possibly be a risk.
So, I go in for my MRI and then go directly to my appointment to meet with my Dr. and go over the results. In a matter of seconds my life forever changed. My tumor was back. After almost 2 years, it was back, and back bigger then when it was first found. It was the size of a large lemon and at first they suggested I could possibly start radiation and oral chemo temodar to try and shrink it down. I was in shock, upset, angry, sad and confused. How in 5 months did this happen??????!!!! I ended it there and said I would like to get a second opinion. The Dr. mentioned if we were really serious about having our own children one day we should look into freezing our embryos. We certainly do and then knew this would be something we would probably end up having to do. After the appointment we had plans to go to my Grandparents and I didn't want to not go. Like I said, everything can change in an instant and I didn't want to change our plans so we went. I did not tell them or anyone. Philip and I had our moment...remained calm and positive it was all going to be OK. I felt bad...we JUST got married, this is how we are going to start our marriage. I felt bad I had to tell my parents, I know it's not my fault but I just felt like F*** this sucks and is really gonna suck!!!!!! Before we went to my Grandparents I had to pull over and call my mom as she knew I was going for the MRI and text me asking how it went. After telling her and hearing her voice crackling, not wanting me to know she was crying I became numb and scared of what would really happen.
We made an appointment the next week at Cedars Sinai to meet with 2 doctors. I had heard they were some of the best so I wanted to see what they thought about everything. This Dr. at UCLA I had been working with seemed unsure, lacked confidence and the fact the tumor suddenly grew so big, so fast made me question everything the past 2 years so I was not going to trust his suggestions right away. To our surprise BOTH doctors confirmed after the 1st surgery Dr. Shafa only removed about 80% when he had told us it was a full resection and would require no treatments. Cedars said they would have suggested 5 weeks of radiation. Soooooo for 2 years I had 20% of my tumor remaining, growing and I and did nothing to prevent it from coming back!?!?!?. WTF. They also let me know there was no way I should do radiation and chemo now because the tumor was so big it would cause me brain damage so a second surgery was 100% necessary. Now I became livid. But no turning back now. I set it in my head OK, brain surgery #2, I did it before and I can do it again. Let's do this!! I heard their opinions and then decided to meet with another well known brain surgeon Dr. Linda Liau at UCLA and right away in my gut I felt she was the one. At this point I had already begun IVF to freeze our embryos and she asked "do you want girls or boys", I said "both", smiled, walked out and said I am going with her! I knew other people that had gone to her and spoke very highly, she was a woman and I felt she understood me, what I was going through and made me feel confident she would do an amazing surgery, which she did, and offered me hope for a long future filled with children.
So that was that, I chose Jan 9th for my surgery so I could enjoy the holidays, NYE and kick off 2018 with brain surgery #2. I still had kept all of this pretty much top secret except to my immediate family, in laws and friends I knew I would be seeing often and could not hide it from. We even hosted a friendsgiving with our best friends 2 days after finding all this news out. I just wanted to get through the holidays and for sure not have people feel sorry for me. It was all going to OK I was confident. I started researching deep into diet and holistic things I could do for tumor prevention. I joined support groups and I was sure I was going to get through this and NEVER let the tumor come back. I got to enjoy the holidays with friends and family, went on a family vacation to Las Vegas which was so fun and then rang in 2018 with no worry in my mind. My surgery was postponed until Jan 23rd because I came down with a bad cold and cough. The surgery went well! Dr. Liau was able to remove close to 85/90% BUT my tumor had progressed and changed to a grade 3 Anaplastic Astrocytoma which made it hard to remove more. The astrocytes spread and it makes it near impossible to remove without causing serious damage. Dr. Liau saved my hearing and eyesight by being careful and leaving behind what she felt was necessary. The option to rid of the leftover tumor cells was 6 weeks radiation with 42 days temodar followed by 12 months temodar. I started everything I could find to prevent the tumor from growing which can be found in my blogs and I also just finished my 6th and FINAL round of temodar this past October and the reasoning for that can also be found in my blogs.
So today November 16th is a touchy and emotional day. It brings back pain and vivid memories of finding out the devastating news of my future. A future I never in a million years imagined. But isn't that how it always is...you never think it will happen to you. You see it on the news, social media or know someone, heard about someone BUT never would it really happen to you. Well that is untrue and anything can happen to any of us at any moment. It is so scary and gives me anxiety but like all posts I do I will end it with positive vibes! I am going to be OK. YOU are going to be OK. Put what you want and believe out to the universe and believe it!!! Believe it can happen, it will happen. If you want it let the universe know! I believe and so should you. As we come into the holiday season and 2019 be thankful, be grateful and never for a moment regret. Take the good and bad. Life will be filled with them both. If you spend too much time worrying WHY ME you will go insane. I did, now I stopped. I suffer PTSD and am trying treatments to help and most the time it does. If you suffer PTSD reach out I would be happy to chat with you.
I will leave you with one last thing, a lesson I have learned. My greatest life lesson has been that life can change in a second. This is why it's important to ALWAYS live your best possible life and to do what you can for others. The whole #livingmybestlife hashtag annoys me because why all of a sudden do you think you should start doing this?? Did someone start this brilliant idea!?!? Like its a trend and if you don't # it, it doesn't count!!? Well whatever you do, do you and LIVE YOUR BEST DAMN LIFE EVER!!!!!!!!!!!!!!! Let's end 2018 with peace, love and positive vibes. XOXO