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Brain Tumor Survivor: Lori

Lori

Last updated: 6/19/16

Lori

It is on Christmas Day that I celebrate 9 years since my brain cancer diagnosis!

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 seizure)
Sx: 12/27/06 subtotal resection, 1P19Q deletions, IDH1 mutation, Mythelated
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 neuropathy) cocktail
TX: 8/21/15-present Novocure
Also: anti-cancer diet, daily veggie juicing, triathlons, marathons, research...
Concurrent diagnosis: FVL (rare blood clotting disorder)


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