First I want you to know my reasons for writing this blog.
I want to some day make a memory book or use this as memories for my children when I have passed away.
Also, I am always asked about the alternative treatments I try and am constantly researching them and asking others questions about the way they eat and the reasons for it. So, I wanted to use this to post any of the crazy diets and alternative treatments I try, use, or have heard about. Please do not use this blog as a medical reference, consult your doctor before trying anything I have listed on here. My doctor knows about the things I am doing right now and I have a list that I keep adding to of questions for him about different alternative treatments I have heard about, to get his take on them and/or permission to use them.
My husband and I have been together for 16 years, married for 13 years. We have a 23 year old daughter, Faith, whom my husband adopted 9 years ago. And 3 sons, Josh (13), Zach (11), and Ben (9). We also have a 6 year old Puggle (Pug/Beagle mix) named Honey (that was the first thing we did on our bucket list).
On November 20th, I had a seizure in the early morning and was rushed by ambulance to the ER where after a cat scan the doctor told us that I have a mass in my brain. Then an MRI confirmed the cat scan showed a 5cm mass, about the size of an egg in my right frontal lobe.
The next morning I had surgery to do a biopsy, which came back inconclusive, because the surgeon completely missed the tumor as he wasn’t a “tumor” surgeon and only a neurosurgeon who mostly operated on the spine, but he happened to be the doctor on call for the hospital and we knew nothing at the time.
A Neurosurgeon from the hospital came into my room and said I have a Glioblastoma (stage 4 brain cancer), which would give me 14 months to live. That gave us a good scare, but thank God, that doctor was wrong! From there my husband sent my MRI images all over the United States and started researching for a doctor. We found one at UCLA and had a surgery on December 14, 2011, which much to our disappointment only removed half of the tumor (again not a “tumor” specialist, but a general neurosurgeon. This time we got an accurate pathology report. I had a stage 2 Astrocytoma mixed Oligodendroglioma.
On the drive home from the hospital, I looked around and said we could get into a car accident and die right now, no one knows the number of their days, at least I know I have 3 to 8 years (according to the doctors, although truly no one really knows and I am not a statistic).
Since only 40 percent was removed, we started to look into our options and did some doctor shopping. We had the choice between 2 years of chemo and radiation (but had heard so many bad things about radiation that we we scared of it). Back at UCLA with a Neuro-oncologist, we we told that another surgery would be the best option. When we went to see the surgeon, we knew that she and a team had invented a vaccine against brain cancer.
When we asked her about it she said it just became available for my grade of tumor (previously it was only for higher grade tumors). We were so happy after the disappointment of only half being removed before, and we were very hopeful with this surgeon as she only does surgery on tumors like mine (unlike the first two surgeons).
My third surgery on March 1, 2012 was successful and everything visible on the MRI was removed (or so we thought, after a PET scan in October 2012, we learned that there were a few “hot” spots still left). There was also enough tumor left to make a vaccine out of. Then the vaccine process began. I had to give blood for a leukapheresis transfusion where they filtered my white blood cells out and converted them to dendritic cells to use for the vaccine.
When I got the vaccine, I received it every other Thursday for a little over a month and had to be up at UCLA every other Thursday and Friday for the vaccine and tests.
It was a 2 hour drive up to Los Angeles for the few times we made the trip, but it was a nice time for my husband and I to have some time alone together to talk. For the past year before this happened, my husband and I have tossed around the idea of renting an RV to drive across the country and as soon as this happened, we realized that now was the time.
When we saw the cost of renting, we decided to buy a used RV. This is the story of our time on the road and throughout our journey fulfilling our bucket lists (since there is no one I would rather do it with) and some of the day to day stuff we go through as a family dealing with my terminal cancer (since there is no cure for brain cancer).
Join us on our journey of fun and struggles as we try to live through this together….
I have since had another surgery with a different surgeon, at Cedar Sinai.
In June 2013, my oncologist at UCLA said my tumor had grown by 10%, then in September the surgeon at UCLA said it hadn’t grown, but that there was still some in my brain and that the best option was for another surgery. She also said there there was no additional growth.
With the thought of another surgery, we decided to doctor shop again and really liked Dr. Keith Black from Cedar Sinai and he did my 4th brain surgery. He believes that he removed everything visible on the MRI, and after discussing my case with the tumor board, they believe that I should start chemo, so I have and will be on it 5 days during every 28 day cycle for much of 2014.
You can read more about it on this blog, during the months of November and December 2013.