The results are in!
Updated: Apr 27, 2018
Overall everything went well!!! My biopsy and future treatments…..Not exactly what I expected. But are they ever…really?! Well good news is the surgery was a success. I am here safe and sound, recovering well with little to now no pain, had no changes in any of my cognitive functions and feeling good. I did have a set back after coming home from the surgery after 4 nights in the hospital and experienced excruciating unbearable pain but listened to my body and knew something was wrong so went back to the UCLA ER and thank God I did because they discovered I had gotten a blood clot in the back of my brain and needed to start treating it ASAP. I stayed another 4 days in the hospital on a heparin drip until my blood flow opened up and left with a plan of twice a day Enoxaparin Sodium stomach injections. These will continue until the clot is fully dissolved which can take months to years. Hoping for the months but also a goal is to transition from the injections to a pill form. The cause they determined was from a mix of the brain tumor, surgery, being female and recently being given a large amount of hormones which was from the IVF I had done the month before surgery. So that sucks but I am grateful I found it and that I did the IVF for the future family we are planning on starting as soon as I am given the OK! Now, for the craniotomy Dr. Linda Liau is positive she removed close to 85% of the tumor. Considering it was the size of a large lemon (7cmx2.5cm) 85% is a large portion and since a tumor can never be 100% removed, 85% is considered extremely good news! My tumor was cut into 4 pieces, biopsied and kept in the neurology lab freezer at UCLA. I specifically asked to have it frozen for the reason that if needed one day I can use it possibly for treatments that Dr. Liau is researching and soon starting trials. I also gave them the OK to use some of it for research purposes. Another great thing about UCLA is all the research they do and why I chose to do my surgery there.
Now for the biopsy details. If you know nothing about tumors then this part will probably be like reading a different language but if you do then you will understand how the change of tumor happened and that it is very common for a tumor to change grade and type over time. My first diagnosis in January 2016 after surgery was a Grade II Oligodendroglioma it then changed to a Grade II mixed Oligoastrocytoma about a year later and for the past almost 1.5 years has remained as a Grade II mixed Oligoastrocytoma and after that first surgery I did no further treatments. This type of tumor at the time was benign and slow growing and didnt seem to act very positively to chemo and radiation so I did nothing but follow up MRI's every 3 months like the Dr.'s told me to do. If I knew what I do now, that the tumor was still there, although small, it was still there and had a 90% chance of growing back and would eventually grow back then I would have of course started everything and anything holistic to try and stop and prevent this monster from growing back. Which it did and quicker than I ever imagined it would out of nowhere. To say I was and still am livid that I was not given proper information on my future with a brain tumor is an understatement but I have decided to stop dwelling on the past and what if's and move on to the now. Another huge reason I started this website and blog in hopes to prevent this from happening to anyone else!!
Currently my diagnosis and tumor has changed. I now have a Grade III Anaplastic Astrocytoma commonly referred to as an AA3. Although the change it is still considered slow growing so that is positive. Some more positives is that the entire tumor is not grade III but showed enough cells were III and because of the tumor type changing to a full Astrocytoma that is the reason for the updated diagnosis. I am also positive for the IGH1 mutation, 1p19q deletion, MGMT mutation and KI67 which is really good to have and also means the tumor will respond extremely well to the treatments of Radiation and Chemotherapy. So with all this news and meeting with my new NeuroOncology team at UCLA I have decided to move forward with the treatments of Radiation and Chemo. I begin March 15th. Radiation is 6 weeks long M-F and I begin Chemo at the same time. I will have to do the chemo for one year. It is in a pill form called Temodor and is tolerated a lot easier than traditional Chemotherapy through an IV. It is more mild, has less side effects and since it is pill form I will be able to be more flexible and get back to Portugal in July! :) My UCLA team is also working on putting together a Neuro team for me in Lisbon so when I am there I can do my scans and blood work which will be sent back to UCLA and we will all work together! At the bottom of the page there is a great video from my Radiation Oncologist Dr. Tania Kaprealian explaining how it all works in detail. Along with these treatments I will continue using all my holistic approaches especially the Keto diet, cannabis oil, frankincense oil, natural herbs and supplements. I will also continue to use all these approaches for the rest of my life!! These tumors are brutal and never want to leave and stop growing so forever I will be on a mission to keep shrinking it and not let the monster continue to grow!
Let me also get straight to point and question I think many have, have asked or don't want to ask…So does this mean you have cancer? Yes. Yes this means I have cancer, brain cancer and have had it since the day I found out in January 2016. I also have most likely been living with this slow growing tumor in my brain for possibly half my life. I wasn't informed correctly of my future and diagnosis after my first surgery and I guess really didn't want to accept the fact I do indeed have brain cancer. I was hopeful and wanted to just be that amazing story of a girl that found out she had a brain tumor, had it removed and it never came back again. Well in fact, it was never fully removed so since my first surgery I continued to have a slow growing tumor that wanted to grow back and it sure as hell did. Some other quick facts about brain tumors is that there is no cure so the tumor will never be 100% gone. So the fact there is no cure and they can never be resected 100% means I will most likely always have a brain tumor. The smaller that sucker the better and the main goal of all this is to keep the tumor small, stable and from growing. It wants to grow and it WILL grow so the main objective is to do EVERYTHING possible to STOP it from growing back. I can live with a small brain tumor. In fact, today, an estimated 700,000 people in the United States are living with a primary brain tumor, and over 79,000 more will be diagnosed in 2018. Brain tumors can be deadly, significantly impact quality of life, and change everything for a patient and their loved ones. They do not discriminate, inflicting men, women, and children of all races and ethnicities. The cause is completely unknown and that makes it impossible to prevent and once diagnosed extremely scary. Just stay aware of your own body and feelings and if something does not seem right then go to a Dr. and get it checked out! Always better to be safe than sorry. I am also here for you and want to help with any questions I can. Especially if diagnosed we are in this together and can get through it!!! I am positive, I am hopeful and I am going to kick this tumors ass!!! Thank you for following my journey! I will keep you up to date on my treatments once they begin and also do another blog soon on all my holistic approaches!! XOXO
What happens during a craniotomy? http://healthinfo.uclahealth.org/Conditions/Cancer/TestsProcedures/Neurology/92,P08767
Watch my Radiation Oncologist Dr. Kaprealian explain brain tumors and how my Raditaion treatment will work https://www.youtube.com/watch?v=9Y_AgxJvzZQ
UCLA Brain Tumor Center https://www.uclahealth.org/braintumor/about-the-brain-tumor-center