Lori Kuban's terminal brain cancer
Donation protected
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.
Christmas Day at our house 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 vomitted thinking I had the flu. My husband asked the kids to give me some space 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 that leads to feelings of invincibility, 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. Cancer to this degree is not operable, and therefore it remained as it does to this day. 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 with a life threatening condition 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 underinsured, 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, regardless of the risk to my health.
For the past 8.5 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 faced with another treatment decision. I chose chemotherapy and underwent 18 months of chemotherapy which was minimally effective. Recently after another MRI suspicious for progression, I was faced again with decisions. I opted for the use of a promising new, cutting edge treatment called Novocure/Optune. It is a noninvasive regional therapy that targets dividing cancer cells in the brain and generally does not harm healthy cells. It works by creating alternating, “wave-like” electric fields called Tumor Treating Fields (TTFields). TTFields travel across the upper part of the brain in different directions to help slow or stop cancer cells from dividing.
Treatment is delivered through 4 transducer arrays that are placed directly on the scalp to target the tumor. The transducer array placement is determined based on each patient's MRI results to maximize the therapy's effect on the tumor.
I have incredible swelling and edema, and the midline of my brain has shifted. Cancer is diffused throughout the entire right side of my brain. Including the vaccine trial and chemotherapy I have been in continual cancer treatment for the past four years. I am hopeful that this new treatment will be a positive turning point for me.
Along with Novocure and my healthy lifestyle I have attemped to stunt the cancer growth by the use of what is known as a cocktail approach which includes using a variety of re-purposed drugs that effectively target different cancer mechanisms. I currently take 13 different daily medications and supplements.
My goal as a mother has always been to allow my children to grow up untouched by my disease. This is difficult finanancially as we try to pay the typical costs involed in raising active and successful high school students including marching band fees, honors band and choir fees, sports fees, ACT exams, driver's ed, etc.
The cost of cancer is astronomical and can be devastating to a typical middle class family even with insurance. We drained our savings to pay for my past medical bills following my 2 diagnoses and care. The cost of 18 months of cross country travel and lodging for the clinical trial was entirely paid for out of pocket. The cost of chemo can be upwards of $5000/month. The cost of Novocure is $21,000/month. Supplements and medications cost nearly $1000/month.
Throughout my illness, I have continued to work. I have never missed a day of work with the exception of the few months I took off to recover from my craniotomy, regardless of how the cancer or treatment side effects effected me including peripheral neuropathy, or travel to treatment. No one works harder than I to hold it all together for my family.
I have been incredibly blessed to see my children, now 17 and 20, grow into amazing young adults, something I thought impossible 8.5 years ago. I am intent on being present for their upcoming graduations, weddings, and the birth of their children.
One of our cars has over 400,000 miles, the other has over 200,000 miles, and both are unreliable in getting me to my medical appointments and my family to work and other activities. We have one child in college, the other will begin college next fall. I would like to travel to other brain tumor centers in the country for consultations.
I will be happy to provide references, and MRI images for anyone interested.
Thank you for all who have been with us on this amazing journey; my husband and children, in-laws, friends, co-workers, my therapy/service dog Hobbes, and kind strangers who have seen a need and responded. We can use some continued support to battle this disease and it's effects on our family.
One of the postives I have been able to take from this experience has been that I have accrued an incredibile amount of personal experience (good and bad) at the hands of the medical establishment, gained a lot of information, and have become aware of many resources. As a librarian I am also skilled in searching medical journals and databases, and am quite comfortable with medical jargon. It is my pleasure to be able to share any and all of this information with those that find themselves in a new and disquieting medical situation. Knowledge is power, and finding reliable information is the key to being an informed consumer and patient and making certain and comfortable treatment decisions. Advocacy for oneself is vital. If there is someone who can benefit from this kind of help, I would love the opportunity to assist so please contact me. It is one way that I can happily give back as I have been so greatly blessed with support and concern.
Christmas Day at our house 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 vomitted thinking I had the flu. My husband asked the kids to give me some space 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 that leads to feelings of invincibility, 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. Cancer to this degree is not operable, and therefore it remained as it does to this day. 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 with a life threatening condition 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 underinsured, 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, regardless of the risk to my health.
For the past 8.5 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 faced with another treatment decision. I chose chemotherapy and underwent 18 months of chemotherapy which was minimally effective. Recently after another MRI suspicious for progression, I was faced again with decisions. I opted for the use of a promising new, cutting edge treatment called Novocure/Optune. It is a noninvasive regional therapy that targets dividing cancer cells in the brain and generally does not harm healthy cells. It works by creating alternating, “wave-like” electric fields called Tumor Treating Fields (TTFields). TTFields travel across the upper part of the brain in different directions to help slow or stop cancer cells from dividing.
Treatment is delivered through 4 transducer arrays that are placed directly on the scalp to target the tumor. The transducer array placement is determined based on each patient's MRI results to maximize the therapy's effect on the tumor.
I have incredible swelling and edema, and the midline of my brain has shifted. Cancer is diffused throughout the entire right side of my brain. Including the vaccine trial and chemotherapy I have been in continual cancer treatment for the past four years. I am hopeful that this new treatment will be a positive turning point for me.
Along with Novocure and my healthy lifestyle I have attemped to stunt the cancer growth by the use of what is known as a cocktail approach which includes using a variety of re-purposed drugs that effectively target different cancer mechanisms. I currently take 13 different daily medications and supplements.
My goal as a mother has always been to allow my children to grow up untouched by my disease. This is difficult finanancially as we try to pay the typical costs involed in raising active and successful high school students including marching band fees, honors band and choir fees, sports fees, ACT exams, driver's ed, etc.
The cost of cancer is astronomical and can be devastating to a typical middle class family even with insurance. We drained our savings to pay for my past medical bills following my 2 diagnoses and care. The cost of 18 months of cross country travel and lodging for the clinical trial was entirely paid for out of pocket. The cost of chemo can be upwards of $5000/month. The cost of Novocure is $21,000/month. Supplements and medications cost nearly $1000/month.
Throughout my illness, I have continued to work. I have never missed a day of work with the exception of the few months I took off to recover from my craniotomy, regardless of how the cancer or treatment side effects effected me including peripheral neuropathy, or travel to treatment. No one works harder than I to hold it all together for my family.
I have been incredibly blessed to see my children, now 17 and 20, grow into amazing young adults, something I thought impossible 8.5 years ago. I am intent on being present for their upcoming graduations, weddings, and the birth of their children.
One of our cars has over 400,000 miles, the other has over 200,000 miles, and both are unreliable in getting me to my medical appointments and my family to work and other activities. We have one child in college, the other will begin college next fall. I would like to travel to other brain tumor centers in the country for consultations.
I will be happy to provide references, and MRI images for anyone interested.
Thank you for all who have been with us on this amazing journey; my husband and children, in-laws, friends, co-workers, my therapy/service dog Hobbes, and kind strangers who have seen a need and responded. We can use some continued support to battle this disease and it's effects on our family.
One of the postives I have been able to take from this experience has been that I have accrued an incredibile amount of personal experience (good and bad) at the hands of the medical establishment, gained a lot of information, and have become aware of many resources. As a librarian I am also skilled in searching medical journals and databases, and am quite comfortable with medical jargon. It is my pleasure to be able to share any and all of this information with those that find themselves in a new and disquieting medical situation. Knowledge is power, and finding reliable information is the key to being an informed consumer and patient and making certain and comfortable treatment decisions. Advocacy for oneself is vital. If there is someone who can benefit from this kind of help, I would love the opportunity to assist so please contact me. It is one way that I can happily give back as I have been so greatly blessed with support and concern.
Organizer
Lori Kuban
Organizer
Waukesha, WI
