Watch my Episode on the Karnofsky Tests for more informaIon. I have done well on these tests.
On December 02, 2018, my brother Jamie had organized a prayer vigil with family and friends. I found this to be excellent in my care and treatment. On one level it was a really important day to see so many people I love and those that love me and have many of them say a few words and some prayers over me. It was a chance to have everyone together and celebraIng life as we did not know how long I had le[ or what was to come. Some people from far away could not aQend in person; but, they parIcipated by sending video messages, audio messages, and wriQen messages. There were smiles, laughs, hugs, and tears. On another level as a ChrisIan, it felt unbelievable to have so many people praying for me and my family.
People from all over and those in aQendance all gave special prayers and offered love and support. Many of these people were delivering meals to our home for weeks during my diagnosis, surgery, and treatment. The love, care, and prayers li[ed us all up and provided spiritual healing and hope regardless of how my treatment went. It was helpful to my kids, my parents, my brother and his family, my friends, and my family. I cannot stress how important it has been to me to have this prayer vigil and the conInued prayers landing on my family and me. As I have said to everyone, we do not know what God’s plan is for us and we may not understand why things are happening; but, we can be at peace to know that it is a good plan. Thank you Jamie for making this happen and to everyone that contributed to making such an impact on my family and me during such a difficult Ime.
My radiaIon and chemotherapy treatments were to begin on December 04, 2018 (you can watch the Episodes on RadiaIon and Chemotherapy). I had gone in for my chemotherapy informaIon session about a week prior on what to expect and was amazed by the discussion. I believe in the future the teaching at such meeIngs will be quite different. They discussed how you need to stay hydrated and that they suggested sodas, ice cream, juices, and your other favourite drinks. They had a table out with many of these drinks as well as some snacks including cookies, donuts, and other sweets. I was a bit shocked because of all I had learned a[er reading the Keto for Cancer book and how important it was to avoid sugar at all costs. We can see that we must be our own best advocates and learn all we can about our opIons and possibiliIes as the Keto for Cancer diet is definitely not part of the standard of care as of yet; but, I feel it is so incredibly important. At this point and sIll today, I viewed these foods and drinks as a literal poison that would feed the cancer.
About a week before my radiaIon treatment was to begin I received a call from my radiaIon oncologist. He said that in order to treat the tumor area with the most benefit he was planning to increase the field of the radiaIon. He wanted to discuss this with me as it would mean there would be some consequences. He said that
we would increase the 3-dimensional boundary of radiaIon around the tumor cavity by an addiIonal 2.5 cenImeters in all direcIons. Although this would increase the chance that we would radiate any of the tumor cells that had escaped the surgery it would mean that there was a chance I could lose my eyesight in my right eye and a 100% chance I would lose the hearing in my right ear. This was yet more bad news and it choked me up. I found it difficult to speak. I answered that we would proceed with this new plan. It was more aggressive; but, it would give a beQer chance at eliminaIng as much of this aggressive cancer as possible and this was the Ime to act. As a single parent, I had to do all I could to fight this disease. I was out at the Ime with my Dad and we discussed it a[er the call and a[er weighing it out we agreed it was the best decision. My radiaIon oncologist called back and asked if we could come to his office for an appointment as he realized that this was a difficult decision. We went to his office and he usually does not do this but he brought us into the computer planning room for the radiaIon treatment and showed how the different beams would enter, hit the tumor cavity, newly selected addiIonal area, and exit my head. I would undergo the maximum of 60 Gy in 30 fracIons of radiaIon on the VMAT or Volumetric Modulated Arc Therapy machine.
I had also looked into another adjunct therapy which is a therapy that is used alongside the standard of care treatments. It is called Hyperthermia. I underwent the full cycle of this treatment and you can hear all about it in my Episode on Hyperthermia which I suggest you watch.
On New Year’s Eve, I was siWng at the table having dinner with my family and friends when suddenly my hearing became muffled. I could see everyone talking and could make out some of what was being said but it was dull. I covered one ear and then the other and could tell I could not hear in my right ear. Although I knew this was going to happen it was sIll a shock and it was strange that this would be my new normal. It was upseWng. I went through the evening and night doing my best to adjust to the hearing loss. That night I prayed even more intently that I would be healed and that my hearing would be restored. I woke up in the morning
and my hearing was miraculously back. I was so grateful and to this day I conInue to have my hearing which is confounding to the doctors. Another step in my miracle in the making.
I reacted very badly to the Chemotherapy. I experienced extreme nausea and had to take some anI-nausea medicaIon daily to keep the nausea at bay. During the month of December, my weekly bloodwork to test for the impacts of the chemotherapy and radiaIon conInued. Each week the bloodwork came back worse. The chemotherapy and radiaIon were destroying my red and white blood cells and also my platelets. Other areas of my bloodwork were also greatly affected. By early January my platelets had reached a criIcal level of 19 and I was taken off the chemotherapy by the hospital pharmacy. This was terrible news – it was one of only two treatment opIons and I was closing in on the end of the most effecIve Ime period for the chemotherapy and nearing the end of the radiaIon therapy. What I didn’t realize was how serious my blood work was. I went home and then was called by the hospital that I needed an immediate blood platelet transfusion as my platelets were at a criIcal level. The normal range is between 150 to 400 and mine were only 19. At a reading of 10, you can start to spontaneously bleed and since there is a +/- 10% in blood platelet test results it was imperaIve I get to the hospital as soon as possible. This was very distressing and involved many long sessions at the hospital while they tested my blood, secured the blood platelets and then I would have them administered via IV. Next, my bloodwork would be retested and it would be determined if my platelets were high enough to go home again or if I needed another transfusion. In all, I underwent five platelet transfusions over the next six weeks and today, more than two years later my bloodwork remains low and I am immune-compromised. My platelets have returned to about the 140 range but, my bloodwork may never return to normal levels. I did not know that this could happen and being immune- compromised and having low blood platelets causes me to modify my life, acIviIes and be extra vigilant about viruses, and other possible pathogens. This has been further heightened during the Covid-19 global pandemic.
I had also been told that due to the amount of RadiaIon in my brain while I was undergoing the radiaIon treatment I would need to go back on Dexamethasone which is a steroid. I had taken Dexamethasone the day I was told I had a brain tumor to reduce the swelling to bring comfort iniIally and reduce the swelling enough for the surgery. Now apparently, I would need to go back on dexamethasone to reduce swelling and pressure due to the RadiaIon Therapy. However, the doctor who administers the Hyperthermia treatments had suggested an alternaIve and a[er viewing the documentaIon with my family and my medical team I began to take Boswellia. I took it throughout my enIre RadiaIon Therapy and never had to go on the dexamethasone which was very rare. Watch the episode on Dexamethasone and Boswellia for more informaIon. I also have a study from the NaIonal InsItute of Health (NIH) on Boswellia on my website under the secIon called Resources and the sub-heading Research.
By January 20, 2019, I had completed my radiaIon therapy and we had to wait for the swelling to reduce over a period of months before we could do the next MRI to determine if the cancer had returned yet. I will explain that waiIng is a challenge. Because GBM grows so quickly, is so deadly, and is not easily detectable unIl later stages you tend to live your life between scans. It is a strange phenomenon and I have found that the building of worry and quesIons such as “What if it is back?” tend to creep into your psyche. I call it scanziety and I believe it is only human to feel some. I would recommend that you talk to others about this when you feel it and remember to try and stay posiIve as I believe this makes a difference in how well your body responds to treatments and how it fights disease.
By this point, I had been on the Calorie Restricted Keto for Cancer Diet for almost three months