Course Adjustment
Prior to this whole journey beginning, many of you know that Kim and I had been on a health journey that had taken us down many different roads. This journey is what greatly influenced our initial response to my diagnosis. After being diagnosed, we spent many hours researching possible treatments and, after fervent prayer and fasting, we decided to pursue treatment via the alternative route. While not a lot of people agreed with our decision, we felt good about it. That being said, I think we took our "feeling good" too far. As I've reflected on those initial days, I've come to realize that I took things too far and became, in a sense, arrogant. I wanted to prove people wrong, especially the medical industry. The first oncologist that I met with scoffed at the idea of anything but the drugs he had to offer helping me fight my cancer. I, however, knew better. If I could change one thing about those first several months, I would have kept in contact with an oncologist and had regular scans to keep tabs on the spread of the cancer. I knew it was spreading around my body, but I had no way of knowing it had spread to my brain and would lead to two emergency surgeries and two months of painful healing.
Now, I want to make sure that my confession of relative arrogance isn't confused for me saying that I made the wrong choice in pursuing the alternative treatments that I pursued. I did see those treatments help my cancer and keep it from spreading as much as it could have. I've also come to understand that those involved with modern medicine have no desire to discuss healing and curing me, they only want to prolong my life. I have, however, seen many individuals cured of my type of cancer by going the alternative route. I will never fully abandon the alternative treatments offered in this world.
So where are we at right now? Well, after being humbled greatly by my brain surgery, some serious reflection took place. We ultimately decided that some combination of modern medicine and alternative/holistic treatment was merited. What I was doing was helping, but it wasn't helping enough. After meeting with an oncologist, Dr. Voorhies, at the Huntsman Cancer Institute, we decided on a course of treatment that included a couple different aspects. First, we needed to address all of the tumors throughout my body. My melanoma has a genetic mutation that about 50% of cases have. This mutation has been exploited by researchers and, with the help of some pills, can be manipulated to essentially kill the cancer. This mutation is referred to as the BRAF mutation and the pills that I take are known as BRAF inhibitors. I take one pill of Mekinist each morning along with two pills of Tafinlar in the morning and the evening. Within days of taking these pills we noticed a significant decrease in the size and number of tumors throughout my body.
Unfortunately, these pills have a decreased effect on tumors in the brain. Prior to my brain surgery, I had ten tumors in my brain. Two of those were removed during surgery. The other eight, at the time, posed no immediate threat to my health and were left there. To address the eight tumors and two cavities, it was determined that I would undergo what is known as Stereotactic Radio Surgery (SRS), also referred to as targeted radiation. Traditional radiation, or whole brain radiation, would pump low doses of radiation throughout my whole brain. The downside to this approach is that the long term side effects are significant. They include short term memory loss and the inability to connect ideas and really comprehend complex ideas. The thought of that terrifies me and, I assume, would force me to ultimately leave my profession as a programmer. Targeted radiation, on the other hand, is much more efficient. Multiple radiation beams are sent from different angles into my brain and are all focused on one particular location. The level of radiation is low enough that it has no impact on the tissue it passes through, but once all beams are focused on the same location, the level of radiation is high enough to destroy what it is focused on. The side effects are normally minimal and are typically short term. Prior to the tumors dying, they swell. As they swell, they can cause headaches, tingling, numbness/paralysis, and a few other side effects. The biggest risk is necrosis, or death, of tissue in the brain immediately next to the areas treated. To fix this, surgery is done and the dead tissue is removed. The chances of this, however, are very small.
On February 20th, I went in to have my mask made for brain radiation. In order to ensure that the radiation hits its mark, a mask is made that will hold your head to a table and keep you from being able to move. The mask is made from a few pieces of plastic and a large mesh piece that holds them all together (a few pictures are below). The mask is made to be very tight on your face to keep you from being able to move your head. For each session of radiation, they place your head inside of the mask and attach the mask to a table. My first session of radiation was on March 1st. They treated 3 areas and my session lasted about an hour. My second session was on March 4th. They treated 4 areas and my session lasted about two hours. My final session was on March 5th. They treated the final 3 areas and it lasted about an hour and fifteen minutes.
I'm not sure that words can fully explain what it's like being in that mask for that long. The two hour session was by far the worst. The first 30 minutes aren't too bad, but then the mask starts to have an impact. It's so tight against your head that the pressure starts to build and become too much. The hard part is that you can't move your head...at all. Nor can you really move your body. There are people watching you throughout the entire session and they can tell when you are in need of a break. I made it through the first session without needing a break, but I needed two breaks the second session and one break the final session. There's a picture below that shows just how tight the mask is on your face. You can see the impact the mesh has on my forehead as it continually pressed against my head. It was really difficult to deal with, but it's worth it knowing that over the course of about four hours my brain was treated.
On March 14th, I went back in to prepare for targeted radiation on my spine. They are going to do five 45 minute sessions of low dose radiation on the area in my spine where the tumor was removed during surgery. Radiation will begin on March 27th and will be every other day. These should be much more manageable than the brain radiation sessions. They used a large bean bag to mold my back. I will lie down in the bag for each session and they'll use a plastic bag and a vacuum to hold my arms and lower body in place. Other than that, I just have to hold my upper body still. Much easier and less painful than the mask. To make sure my body is where it needs to be, they placed two dots on the side of my bag and tattooed a dot on my chest. They use a laser to make sure all three dots are lined up where they need to be. The technology that is involved with these procedures is incredible. I'm sure learning a lot.
So other than the radiation, I'll continue my BRAF inhibitor pills until the oncologist tells me they aren't doing their job anymore, which is usually between six and nine months. At that point, I will switch over to traditional immunotherapy to continue fighting.
From a holistic standpoint, I have started a new diet. The diet was designed by a doctor named Johanna Budwig. She was a German scientist who found that "highly unsaturated essential fatty acids (like those found in flax oil), when combined with high quality protein (which makes essential fats easily soluble), will counteract toxic and poisonous accumulations in all tissue" (cited from "The Oil Protein Diet Cookbook by Dr. Johanna Budwig. Found on page v. Copyright 1994). The diet consists of eliminating all processed foods and eating a healthy amount of fruits and vegetables. The main course, so to speak, of the diet is a mixture of flaxseed oil and quark cheese, a German cheese. This is the oil and protein combination referenced in the above quote. There is a chemical reaction that takes place when these two items are mixed that has an impact on the body. Twice a day I have a dish made of flaxseed oil, quark cheese, ground flaxseed, milk, fruit, and honey. I also have a salad, steamed vegetables, buckwheat, a juice, fruit, and a soup throughout the day. I've noticed a difference in my energy since starting this diet. Dr. Budwig used this diet to heal many terminally ill patients, including those with melanoma. We are hopeful that this diet, in conjunction with my pills, will give me a great chance to beat this and ultimately be declared cancer free.
This has certainly been a journey of learning and growth. I've been humbled as each hurdle has presented itself and, while I have always believed modern medicine has its place in society, I've come to understand the need for balance in my course of treatment. We've had to make some adjustments on the way, but we feel good about where we are at and the direction we are headed.
Now, I want to make sure that my confession of relative arrogance isn't confused for me saying that I made the wrong choice in pursuing the alternative treatments that I pursued. I did see those treatments help my cancer and keep it from spreading as much as it could have. I've also come to understand that those involved with modern medicine have no desire to discuss healing and curing me, they only want to prolong my life. I have, however, seen many individuals cured of my type of cancer by going the alternative route. I will never fully abandon the alternative treatments offered in this world.
So where are we at right now? Well, after being humbled greatly by my brain surgery, some serious reflection took place. We ultimately decided that some combination of modern medicine and alternative/holistic treatment was merited. What I was doing was helping, but it wasn't helping enough. After meeting with an oncologist, Dr. Voorhies, at the Huntsman Cancer Institute, we decided on a course of treatment that included a couple different aspects. First, we needed to address all of the tumors throughout my body. My melanoma has a genetic mutation that about 50% of cases have. This mutation has been exploited by researchers and, with the help of some pills, can be manipulated to essentially kill the cancer. This mutation is referred to as the BRAF mutation and the pills that I take are known as BRAF inhibitors. I take one pill of Mekinist each morning along with two pills of Tafinlar in the morning and the evening. Within days of taking these pills we noticed a significant decrease in the size and number of tumors throughout my body.
Unfortunately, these pills have a decreased effect on tumors in the brain. Prior to my brain surgery, I had ten tumors in my brain. Two of those were removed during surgery. The other eight, at the time, posed no immediate threat to my health and were left there. To address the eight tumors and two cavities, it was determined that I would undergo what is known as Stereotactic Radio Surgery (SRS), also referred to as targeted radiation. Traditional radiation, or whole brain radiation, would pump low doses of radiation throughout my whole brain. The downside to this approach is that the long term side effects are significant. They include short term memory loss and the inability to connect ideas and really comprehend complex ideas. The thought of that terrifies me and, I assume, would force me to ultimately leave my profession as a programmer. Targeted radiation, on the other hand, is much more efficient. Multiple radiation beams are sent from different angles into my brain and are all focused on one particular location. The level of radiation is low enough that it has no impact on the tissue it passes through, but once all beams are focused on the same location, the level of radiation is high enough to destroy what it is focused on. The side effects are normally minimal and are typically short term. Prior to the tumors dying, they swell. As they swell, they can cause headaches, tingling, numbness/paralysis, and a few other side effects. The biggest risk is necrosis, or death, of tissue in the brain immediately next to the areas treated. To fix this, surgery is done and the dead tissue is removed. The chances of this, however, are very small.
On February 20th, I went in to have my mask made for brain radiation. In order to ensure that the radiation hits its mark, a mask is made that will hold your head to a table and keep you from being able to move. The mask is made from a few pieces of plastic and a large mesh piece that holds them all together (a few pictures are below). The mask is made to be very tight on your face to keep you from being able to move your head. For each session of radiation, they place your head inside of the mask and attach the mask to a table. My first session of radiation was on March 1st. They treated 3 areas and my session lasted about an hour. My second session was on March 4th. They treated 4 areas and my session lasted about two hours. My final session was on March 5th. They treated the final 3 areas and it lasted about an hour and fifteen minutes.
I'm not sure that words can fully explain what it's like being in that mask for that long. The two hour session was by far the worst. The first 30 minutes aren't too bad, but then the mask starts to have an impact. It's so tight against your head that the pressure starts to build and become too much. The hard part is that you can't move your head...at all. Nor can you really move your body. There are people watching you throughout the entire session and they can tell when you are in need of a break. I made it through the first session without needing a break, but I needed two breaks the second session and one break the final session. There's a picture below that shows just how tight the mask is on your face. You can see the impact the mesh has on my forehead as it continually pressed against my head. It was really difficult to deal with, but it's worth it knowing that over the course of about four hours my brain was treated.
On March 14th, I went back in to prepare for targeted radiation on my spine. They are going to do five 45 minute sessions of low dose radiation on the area in my spine where the tumor was removed during surgery. Radiation will begin on March 27th and will be every other day. These should be much more manageable than the brain radiation sessions. They used a large bean bag to mold my back. I will lie down in the bag for each session and they'll use a plastic bag and a vacuum to hold my arms and lower body in place. Other than that, I just have to hold my upper body still. Much easier and less painful than the mask. To make sure my body is where it needs to be, they placed two dots on the side of my bag and tattooed a dot on my chest. They use a laser to make sure all three dots are lined up where they need to be. The technology that is involved with these procedures is incredible. I'm sure learning a lot.
So other than the radiation, I'll continue my BRAF inhibitor pills until the oncologist tells me they aren't doing their job anymore, which is usually between six and nine months. At that point, I will switch over to traditional immunotherapy to continue fighting.
From a holistic standpoint, I have started a new diet. The diet was designed by a doctor named Johanna Budwig. She was a German scientist who found that "highly unsaturated essential fatty acids (like those found in flax oil), when combined with high quality protein (which makes essential fats easily soluble), will counteract toxic and poisonous accumulations in all tissue" (cited from "The Oil Protein Diet Cookbook by Dr. Johanna Budwig. Found on page v. Copyright 1994). The diet consists of eliminating all processed foods and eating a healthy amount of fruits and vegetables. The main course, so to speak, of the diet is a mixture of flaxseed oil and quark cheese, a German cheese. This is the oil and protein combination referenced in the above quote. There is a chemical reaction that takes place when these two items are mixed that has an impact on the body. Twice a day I have a dish made of flaxseed oil, quark cheese, ground flaxseed, milk, fruit, and honey. I also have a salad, steamed vegetables, buckwheat, a juice, fruit, and a soup throughout the day. I've noticed a difference in my energy since starting this diet. Dr. Budwig used this diet to heal many terminally ill patients, including those with melanoma. We are hopeful that this diet, in conjunction with my pills, will give me a great chance to beat this and ultimately be declared cancer free.
This has certainly been a journey of learning and growth. I've been humbled as each hurdle has presented itself and, while I have always believed modern medicine has its place in society, I've come to understand the need for balance in my course of treatment. We've had to make some adjustments on the way, but we feel good about where we are at and the direction we are headed.
Using lasers to make sure I'm lined up where I need to be
The two people that did all three of my sessions
Strapping me into the masking
Attaching me to the table
The dreaded mask...
Positioning me prior to beginning radiation
All sorts of machines in this room!
The doctor had to come in and okay everything prior to beginning radiation
These two were great to help me out throughout the entire process
Before the pain begins...
This is the position that I would lie in the entire time.
Another angle...
This is what the mask did to my face. This should give you an idea of the kind of pressure it puts on you. That's what I dealt with for at least an hour each day.
Another view...
This is the mask. The dots on there indicate where radiation beams need to be sent.
The machine that did the radiation
My bottle of Tafinlar. I'm the only one that can touch it with my bare skin...
The Tafinlar pills
God bless you, Ryan. Your faith and courage are an amazing example. Our prayers are with you and Kim and your kids. Thanks, Ryan.
ReplyDeleteRich & Diane Green