and we had done our prayers, hugs, and kisses before she took the kids home. I gave my three kids a special talk, lots of hugs, kisses, tears, and prayer, and said goodbye as they le[ for the night before my surgery. The morning of the surgery I said goodbye to my Dad and brother as I was being wheeled down the corridor towards the operaIng room. They told me some friends were keeping a vigil and would be waiIng outside. We said a prayer and I was whisked away into the operaIng room.
There were at least four or five people in the OR and they wheeled me up to the operaIng table. I slid across onto the narrow operaIng table and the anesthesiologist explained what was going to happen to put me out for the surgery and that he would be there to monitor the situaIon. My surgeon asked if I had any quesIons and then they asked me to count in my head. I began a final prayer before the procedure, and I do not remember if I completed it.
I woke up in the neurosurgery post-operaIve room where I had a nurse beside me conInuously. They asked some quesIons and although I was groggy, I seemed to be able to think and move which was an answer to my prayers. A[er several hours I was able to see my Dad and ask how the surgery went. I was told that they were able to remove all the tumor they could see which was great news. My Dad and brother were keeping my family and friends up to date and everyone was relieved that I had made it through the surgery.
I was in the hospital overnight and the first night was not pleasant. I was in a room with four other people that included some troubled souls. One of the nurses checking on me kept trying to give me morphine over and over again that I did not want as the Advil and Tylenol were working fine. The next day I heard the neurosurgeon come in and speak to each of the other paIents in the room. He let them know their surgery had gone well and they would be on the mend. When it was my Ime he came into my curtain area to tell me the bad news. It was definitely, Glioblastoma MulIforme and although the surgery went very well, and they were able to remove all of the tumor they could see it is a terrible diagnosis. I asked how long I had. He said with treatment including radiaIon and chemotherapy I would have about a year of median survival. As a single Dad this
news was devastaIng. I would miss my kids’ life stages and accomplishments from High School GraduaIon, University or College, their weddings, and any grandkids. I would not be there to help them in life and felt I was failing them. I remember tears at this point. I asked if there was anything else, I could do? There were maybe a few clinical trials but there was nothing that had good possibiliIes. As he walked away I knew I had to do all I could to fight this disease so I could be there for my kids, family, and friends. I would be able to go home as long as I could get a few things accomplished. I had to be able to go for a short walk on my own, I had to get cleaned up and dressed and go to the bathroom on my own. Shortly a[er seeing the doctor, my family came to the hospital to see me and take me home.
When I arrived home, I would be sleeping with a family member right beside me every night to ensure I was okay and there were no effects from the surgery that the hospital had asked us to watch. I began researching immediately. I was searching for everything I could find about GBM and what the next steps were.
The next day which was one day a[er being released from the hospital my brother Jamie had asked a friend of his to come by and speak to us about the Keto diet as a possible opIon to help with cancer. His name is Kevin Dornan and he made Ime for us immediately to get me started on the Keto diet for which I am very grateful. His Dad (who is a doctor) was baQling cancer and when my brother’s friend had looked into Keto in great detail over many months he found that the Keto diet may help fight the cancer. In their case, it had incredible and unexpected results. I began to follow the diet the next day. In hindsight I was doing the diet I am on today incorrectly for the first 20 days – but it was a start in the right direcIon. Part of my miracle in the making.
Everyone was looking into different opIons and while I had found and was reading the book “Keto for Cancer” by Miriam Kalamian others were looking at alternaIves. You should watch my episodes on Keto for Cancer – a link to the book is on my website under Recommended Products. My son found a possible treatment opIon that looked the most promising of all the opIons we had found to date and we began the process of looking into this possibility. It was called Gama Knife by Dr. Duma. Part of this process entailed going back to the hospital where I had my surgery to pick up two CDs with MRI scans on them. One had the pre-operaIon
and the other had the post-operaIon MRI. We le[ almost immediately for the hospital which was about 40 minutes away.
While we were waiIng to be helped to get the CDs with the MRI Scans we turned and faced away from the nursing staIon and the elevator doors opened. My surgeon happened to walk out of the doors and we waved to him. He came over and asked us what we were doing there. We explained the possible treatment and he said do not go down that road. We said there really aren’t any opIons and what did he suggest. He suggested an Oncologist who thinks outside the box. We took the name of the Oncologist, picked up the disks of the scans, and made our way out of the hospital. This is a huge hospital, and the odds of bumping into my surgeon at the exact instant we were there was incredible. In fact, only a few months later they had constructed a wall in that exact area that would have blocked us from seeing my surgeon from our same vantage point. Another part of my miracle in the making.
Through a lot of tenacity and out of an abundance of grace, we were able to meet with the outside the box Oncologist and discuss my situaIon. His name is Dr. Klimo. He is an incredible doctor and has been such an important part of my journey.
Although there were no known treatments we would look for anything that may help. And having someone on our team that goes beyond the Standard of Care treatments was key. This incredible oncologist had come out of reIrement to help his paIents and he had agreed to take me on as a paIent. Another part of my miracle in the making.
We menIoned a couple of the potenIal therapies we had researched to date to the outside-the-box oncologist and he looked into each of them and gave us feedback and the results of his research. One opIon was Dr. Duma and the Gamma Knife which targeted the white pathways to potenIally hinder or stop the growth of GBM. Another one was a novel, but brand new technique being used in prostate cancer treatment called AcInium-225. UlImately, we had to decide about the Gamma Knife opIon as if we proceeded with that procedure I would not be able to follow the Standard of Care radiaIon treatment. We elected to follow the Standard of Care RadiaIon treatment. The AcInium-225 potenIal was not available and it
was not for GBM although it does look like a possible treatment for some cancers in the future. We were not going to leave any stone unturned.
My research had indicated that we should find out if I was MGMT Methylated or not. This is a leading indicator of GBM survival. We asked for a copy of the Pathology Report and picked it up. It said that I was MGMT Methylated. Please watch the episode on MGMT MethylaIon for more informaIon about this.
All my research on the Keto for Cancer diet had cleared up some of the quesIons I had about the diet and how to get it into pracIce. I had a video call with Miriam Kalamian to go over what I was doing and the quesIons I had for her. She was extremely helpful and we made some adjustments and set up my Cronometer App properly together. I suggest you watch my Keto for Cancer Episodes and download Cronometer. For ease, I have this on my website under Recommended Products. If you would like the free Cronometer App that is great and it works well.
During the month of November 2018 when I was recovering from the surgery, watch my Episode on Debulking to learn more about the surgery process and recovery. I conInued to do research every day and spend Ime with my family.
One a[ernoon I sat down to take a rare break. It was November 26, 2018. I sat down in my chair, turned on the TV and the last channel that had been watched came on and it was in the middle of the a[ernoon news. The news story came up on the screen and the announcer said a new cancer drug had just been approved by the FDA. It was called Vitrakvi or LarotrecInib. They talked about it very briefly and then the screen started scrolling with the various Cancer’s that the drug could potenIally be effecIve on. To my amazement, Glioblastoma MulIforme was listed. I hit record on the PVR, rewound the program, and watched it again. There had never been a drug that could potenIally treat GBM and here it was listed in front of me. If I had sat down a few seconds later I never would have heard about it. If the TV had been on a different channel I never would have seen it. This goes beyond random luck and I consider this to be divine intervenIon, a true blessing, and Part of my miracle in the making.
I dove into this potenIal immediately and found that there was only a 1% chance that I would test posiIve to potenIally go on this drug. It requires that you are either NTRK 1, 2, or 3 also known as NTRK A, B, or C. They geneIcally test your
tumorandifitisNTRK1,2,or3thenyoumaybeabletotakethedrug. Itoldmy family and presented the drug to my Oncologists. None of them had heard of the drug. One of them informed me about FoundaIon One for tesIng but it would be expensive.
My outside-the-box Oncologist Dr. Klimo said he would look into it right away. He iniIated some local geneIc tesIng that was unfortunately inconclusive so he arranged for a second geneIc test to get underway.
At various Oncology appointments, I would undergo some Karnofsky Performance Scale tests. These tests help doctors to determine on a scale how well you are doing physically and mentally and as another possible way to determine if the cancer is returning.