Last updated: 6/19/16
It is on Christmas Day that I celebrate 9 years since my brain cancer
CHRISTMAS MORNING, 2006 was the day that forever changed my life and
that of my family's. It was the day I was diagnosed with brain
cancer. and I crossed the threshold from the life I knew into the
life I had not chosen yet was about to live.
It started out with much excitement and anticipation. Our kids, then
8 and 11, burst into the room of my husband and I with the unbridled
joy unique to Christmas morning. I awoke feeling ill. I had a
crushing headache and was dizzy and nauseous. I got out of the bed
and vomited thinking I had the flu. My husband asked the kids to give
me a moment and they left to look under the Christmas tree. When I
returned to bed I spoke to my husband and he said, "Lori you are
slurring your words I think I should take you to the emergency room".
"The hospital on Christmas morning, no way!" was my response and it
was the last thing I said before going into a grand mal seizure. The
kids called 911 and soon an ambulance, police car, and several fire
trucks descended upon our quiet suburban cul de sac. The ambulance
whisked me away from my typical middle class family existence and the
innocence of the young (I was 35 years old) that leads to feelings of
invincibil ity, into a new world. A world not of my choosing but one
that I was to enter, none-the-less.
I underwent many tests that day and was later told I had a brain
tumor and needed a craniotomy. Two days later I had brain surgery and
only a part of the tumor was able to be removed. The cancer was quite
diffuse, insidiously insinuating itself into healthy brain tissue.
Following surgery I was in the ICU and my family did their best to
bring Christmas to me and we celebrated in the hospital room that
which we had not the prior days.
Several days after I returned home from surgery I found myself with
chest pains and shortness of breath. I was adamant I not return to
the hospital for fear of disrupting our lives once again. Not able to
stand the pain any longer I relented and my husband carried me out to
the car for a return trip to the hospital. Back in the hospital after
yet more tests it was determined that both lungs were filled with
blood clots. My family and I were faced with a second life
threatening diagnosis. Another frightening stay in ICU ensued. This
hospitalization lead to a diagnosis of a rare blood clotting disorder
that puts me at high risk for heart attack and stroke. Two life
altering diagnoses later I began the new year and a new life.
We were now faced with tens of thousands of dollars in medical bills
from neuro-surgery, radiology, pulmonary emboli and 2
hospitalizations in the ICU. These past bills along with being
under-insured, I was often forced to choose between paying my
mortgage which would maintain the family life we had worked so hard
to obtain, and paying for past medical bills and life saving MRIs and
tests to monitor for clots. I often chose the mortgage and I went
without necessary care as I was so desperate to protect my children
from the fall out of my brain cancer. I have always been passionate
about allowing the kids the innocent and carefree childhood all
children deserve, and I did all within my power to do so. The
financial toll this disease has taken on our family has been
enormous. (hence my Go Fund Me page; www.gofundme.com/lorikuban
For the past 9 years I have had MRIs every three months, every 90
days facing the possibility of a life changing reading, a new time
stamp on my life.
Immediately after diagnosis I did much research into traditional and
complementary medicine. Adopting a lifestyle of raw vegan foods,
daily vegetable juicing, and exercise, I was determined to help my
own immune system battle this disease. I began participating in
triathlons and completed my first half and then full marathon. I was
able to remain relatively stable for 5.5 years. After this amount of
time, when comparing current scans to previous years' scans, it
became clear that the tumor had progressed and it was perhaps time
for traditional treatment. I enrolled in a brain cancer vaccine
clinical trial in Pittsburgh, PA. This involved my husband and I
travelling from WI to PA every three weeks for treatment. Arranging
for unpaid time off of work, transportation for my kids to their
various school and social activities, setting up meals for them, and
dealing with unforseen situations from across the country was
difficult. We lived this way for 18 months. I was dropped from the
clinical trial due to more concerns about tumor progression. I was
then faced with another treatment decision. I chose chemotherapy and
underwent 18 months of Temodar which was minimally effective.
Recently after another MRI suspicious for progression, I was faced
again with decisions. I opted for the use of Optune.
I also employ a cocktail approach which includes using a variety of
re-purposed drugs that effectively target different cancer
mechanisms. I currently take 11 different daily medications and
supplements. I used DCA for 5 months last year until severe
peripheral neuropathy became an issue.
When I was diagnosed my kids were 8 and 11. They are now nearly 18
and 20 years old. I have been blessed to have witnessed many of their
milestones including homecomings, proms, band and choir concerts,
school plays, cross country meets, my daughter's high school
graduation, her acceptance into and move to college, in a few months
my son's high school graduation, his move to college, moving my
daughter into her first apartment, and hopefully within a year my
daughter's college graduation. I have been tremendously blessed.
Hopefully my story will provide some hope for those especially newly
diagnosed that there is life after diagnosis!
Merry Christmas, and the best to all on this brain tumor journey.
Lori (44 years young)
Dx: 12/25/06 oligodendroglioma rt parietal lobe, grade II (grad mal
Sx: 12/27/06 subtotal resection, 1P19Q deletions, IDH1 mutation,
Complications: 1/18/06&2/14/08 pulmonary embolism; 1/15-1/31/06
severe Dilantin reaction
Recurrence: Noted gradually over time when comparing MRIs from date
of diagnosis to current date
Tx: 9/15/11-2/1/13 UPMC recurrent low grade glioma vaccine clinical trial
Tx: 4/29/13-4/14/14 Temodar (5/23 sched.)
TX: 1/1/15-present Metformin, Lansoprazole, Celebrex, Chloroquine,
Melatonin, Vit. D, CBD, PSP, vit. B, Alpha lipoic acid (DCA
TX: 8/21/15-present Novocure
Also: anti-cancer diet, daily veggie juicing, triathlons, marathons,
Concurrent diagnosis: FVL (rare blood clotting disorder)