During Thanksgiving I was able to go back home and spend time with my family and I didn’t have any radiation treatments! I was so excited to eat all that good food and watch some football!
After Thanksgiving I had to get on a flight to Houston, TX because I was invited to perform at The 2016 Holiday Soiree benefiting the Toys4Tots! This is a great organization that provides kids in need presents during the holiday season. We were able to donate a lot of toys to the organization and I was able to share my story with the people in the audience and let them know the appreciation of organizations like this and others that help anyone in need!
During the event we asked everyone in the audience to be a part of the #MannequinChallange and the video below is the finished product! LOL!
So I’ve moved to Boston, MA and I started Radiation Treatment on Nov.15 2016. The proton therapy team at Mass General is so nice. Everyone from secretaries to the nurses, the residents, and the radiology doctors are really great and give me all the information needed. This is a tough time for me, since I’ve always thought of myself as an intelligent and strong person since I did graduate from an Ivy League school with a Bachelors Degree and I work out 4 times/week. Some of the side effects of radiation scared me, things like headaches, short term memory loss while on radiation, fatigue, but with all these side effects I just kept telling myself that this will kill all the cancer cells and keep the healthy ones safe.
The radiation started and the first week was the toughest for me. I had uncontrollable headaches and some vomiting. It wasn’t a pretty sight. I couldn’t keep any food down and I just wasn’t hungry for at least 3 days. This was some of the worst pain that I’ve ever had in my life but somehow I got through it. When people talk about cancer all you really see is the loss of hair but most people don’t know about the other side effects so its good to keep it real and let people know that its not a fun time.
During my second week of radiation, I started taking it better, I wasn’t getting headaches or any nausea, I was actually starting to feel like myself again!!
I’ve finished my 2 rounds of chemotherapy and now I go on to the next stage of my treatment plan.
I’ve had the chance to meet with a few doctors to figure out what type of radiation would be the best for my condition. There are a few different types of radiation that you can get and I chose to go with Proton Radiation. The only problem is that there are only 22 proton radiation cancer centers in the U.S. and there are none in New York. The closest one to me was in Boston, MA, so i had to go meet with the doctors at Mass General Hospital to figure out my treatment plan there.
Proton Radiation Maschine
Yesterday, September 27th, 2016 I started my second round of chemotherapy. This time I need to stay in the hospital for only 2 days. I should be able to leave today! This time the chemo hit me harder than last time. From the minute I started receiving the chemo I started feeling nausea. My stomach started feeling funny, even tho they gave me the medicine that would take care of the side effects I was still feeling terrible.
As you can see from the video I look very fatigued. I’ve been sleeping all day, feeling nauseous all day. I walked around a bit in the hospital but nothing made me feel better. I tried drinking a juice with turmeric and ginger ale and nothing helped, I just told myself this is how it might be this time around. My blood levels looked good so no need for any transfusions. For right now I will just have to go home and rest.
I will be posting some more videos on my facebook page @SVETMUSIC. Follow me on there and everywhere else to see what’s coming up next for me! I will keep you all updated!
Since I’m doing a few rounds of chemo, I knew my hair would eventually start falling out. Most doctors say it takes 3 weeks for it to fall off, but they say it starts small and then a lot falls out at once.
To get rid of some of the anxiety of finding hair when I’m waking up I decided to shave my hair completely off. This was a big decision for me, my hair is a big part of me and my image. As a performer having a haircut as I did, people would always look it and wonder where I got the haircut from. From now I would have to get used having no hair for a few months. I didn’t dwell this moment, it took some strength but I talked myself into shaving it while performing a song on my violin and doing all of this live on Facebook.
The video turned out great and a lot of people watched. The big reason I wanted to do this is because I wanted to take control of this, I didn’t want to wait and see what happened. I knew what would happen so I took it in my own hands and now I feel better for it
My surgery lasted 3 and a half hours and consisted of the doctors taking out a small piece of my skull to open up my brain and allow some space for the CF fluid to move around. Then my surgeon dissected the tumor the size of an almond out of my cerebellum. Once they took out the tumor they stitched me back up and let me come out of anesthesia.
All week while I was in the hospital I was playing the video game FIFA with my brother and when I was coming out of anesthesia I thought that I was still in a game and I asked the doctors if I won the game. Of course they started laughing and told me that I’m coming out of the anesthesia. Then I was sent into post-op care to make sure there weren’t any infections or problems from my surgery. From the pictures below you can see the small tumor on the picture on the right, compared to the MRI from after surgery.
I then had to stay in the hospital for another 3 days until the wound healed and the doctors saw that I can drop the CF fluid pressure on my own. Luckily the doctors told me that I can now walk around and even go outside for a bit. I then decided to bring out my violin and see if I still had the same skills as I did before.
Then that video became viral and was picked up by the local news and also the national TV show ABC’s World News with David Muir.
I was so surprised and thankful from all of the support I was getting that I decided to create a GoFundMe page to help out with some of my expenses during my hospital stay.
All of the positive thoughts and prayers from my fans were with me! I could literally feel all of the prayers from people around the world! This is what pulled me through and helped me get better after surgery as quick as possible.
The next stage of my recovery figuring out what the tumor in my brain was, and I had another appointment with my doctor August 13th, to find out lab results. I finally got to go home and be with my dogs!
So I’m back in the hospital starting my treatment for my Medulloblastoma. I’m starting chemotherapy on September 5th, 2016. I have to stay in the hospital for 2-3 days so they see how I react to the chemotherapy.
Before I got my chemotherapy I had to do a spinal tap. This is a long needle that goes into the middle of your back and it has to stay there for 2 minutes until spinal fluid is released. This fluid is then taken in for lab work to see if I had any cancer cells in my spine. The doctors showed me the results of the spinal tap and full body MRI as well as my blood work. Everything looked okay, I had no other problematic areas, just my brain contained blue cells which are the medulloblastoma cells.
This was a great sign! With this treatment I’m hoping for the best! Once I started chemotherapy I started feeling drowzy right away and I felt a lot of fatigue.
I was given medication for nausea and vomiting and I felt fine other than being very tired. I tried to stay up the first night to watch a movie but I just couldn’t.
The second day of chemotherapy I only had to take 1 of the 3 chemo medicines over a span of 30 minutes, which was a lot easier to take than the first day of chemo. I didn’t have too many side effects while I was in the hospital but during both of these days I made sure that I was still sticking to my diet and trying to drink as many fresh juices and as much water as possible.
Chemotherapy breaks down the immune system, and I was trying to build it up before it was going to break down so I bought a few supplements that help out with being in chemo such as
- Barley Grass Extract
- Reishi Mushrooms
- Asparagus Root Extract
- Black Seed Oil
- Flax Seed
I mix some of these in my food, and in my juices and these help out my immune system as well as bringing the white blood cell count up.
The first few days when I came back home from chemo were kind of a blur, it felt like I was sleeping 18 hours per day and when I was up I wasn’t overly motivated to do anything. 5-6 days after I had chemo I started feeling a lot better and I actually went to the gym to get some exercise. I started feeling normal again!
Once I was in the emergency room, I told the doctors about my constant headaches and they sent me in for an MRI.
A little bit of backstory…I’ve been healthy all my life. I work out 4 times/week, I eat healthy, never been a smoker or a big drinker and was always athletic and into sports. Other than having to wear glasses when I was young (and now contacts) I’ve never been to the hospital for more than an hour and now the hospital staff was telling me I had to stay overnight so they could observe me. I had no idea what was going on as I’ve never been in a situation like this.
Then the results of the MRI came back and took me by surprise like I was in a haunted house. The results showed that I had *Hydrocephalus in my brain and that I was born with and had a **Chiari Malformation. The doctor’s then told me that I couldn’t go home and that they would have to do brain surgery on the same week. The doctors were surprised that I had not had any worse side effects and told me that if I went home I had a chance of stroke.
As you can imagine this was not the news I wanted to hear. I was healthy as can be one day, and then the next they tell you that you need brain surgery.
So they told me they would have to take a small piece of my skull to allow the CF fluid to move around without any problems. I didn’t know how to react, was my brain going to be exposed, am I going to be able to play sports like I used to, am I going to be able to play the violin like I do. I hoped for the best and put it in the doctors hands. The doctors then scheduled me for another MRI to get a closer look at my brain because along with the *Hydrocephalous and **Chairi Malformation they also saw another problematic area in my brain that they would need to look at closer.
The second MRI showed that I had a small tumor in my brain. They told me that they would have to take it out and send it to a lab to see what it could have been. My doctor said that he was surprised to see an brain MRI and see 3 different problematic areas, but he said that I will get through this.
I had one of the best surgical teams at Strong Memorial Hospital . Dr. Silberstein along with his team talked me through the whole procedure and the post-op care. They told me I would have to have a valve placed in my brain after my surgery for 2 days to see if my CF fluid is at a normal rate and then they would be able to take it out. This scared me because they said that if the CF fluid did not drop properly than I would need a permanent valve in my brain. The doctors team told me this would be 50% chance that I would need the valve in my brain. I was just hoping for the best and praying that I would still have the same cognitive and physical abilities I do that I had before.
*Hydrocephalus is a condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) within the brain. This typically causes increased pressure inside the skull.
**Chiari malformation, is a malformation of the skull. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow.
I received my lab results from the tumor they removed in my head and I got some news I didn’t think I would be getting at this age of my life. I found out that the tumor was a type of CANCER called Medulloblastoma. They gene typed my cancer as the SHH Medulloblastoma which is only found in 1 out of 2 million cancers.
Medulloblastoma () is the type of pediatric malignant primary brain tumor (cancer), originating in the part of the brain that is towards the back and the bottom, on the floor of the skull, in the cerebellum orposterior fossa.
A week ago I didn’t know what medulloblastoma was and now I have it in my brain…my mind was going so many places but I was glad this was happening to me and not to someone in my family because I don’t know how I would be able to deal with that. I never once thought ‘Why me” or “this is unfair”… I always say life is life, and things will happen that you won’t ever understand, they say “Fair is a place they judge pigs” so there is no reason to dwell on what has happened but find ways to deal with it.
I stared doing my own research on cancers and what causes it, but there are so many different opinions that you don’t know where to look. I asked my doctors how I could have gotten this disease, ‘did I eat something’ ‘is it because I hit my head?’ but all they could tell me is that ‘I was unlucky’. Either way, I changed up some of my diet. I started eating less sugars and no more red meats. I started juicing, making fresh juices with kale, apples, ginger. All these things seemed to help a bit and if anything they definitely gave me more energy.
My doctors went over my recovery plan and it consisted of
2 rounds of Chemotherapy (3 weeks apart)
30 rounds of Radiation (15 minutes every day)
Then the doctors will take another MRI of my brain to see if there is still anything visible and if there isn’t then I will not need any more rounds of chemotherapy. So in a span of 1 month, I was healthy then out of nowhere I had brain surgery, a tumor was taken out of me, and I would have to start chemo.
On top of that my 30th Birthday was on September 3rd and my chemo would be starting September 5th. I got to celebrate my Birthday with some friends before my tough road ahead.