Difficult Decisions
On June 13th I had a phone call with Dr. Burt. She informed me of the potential findings of Leptomeningeal Carcinomatosis, as well as the traditional form a treatment for that, which is whole brain radiation. With difficult news oftentimes comes difficult decisions...and that's what we faced.
From the get-go, whole brain radiation has been something I wanted to avoid. I've come to understand the dangerous and debilitating side effects of chemotherapy and radiation. I'm not too keen on using those forms of treatment with my body. That being said, the targeted form of radiation seems to have minimal side effects on surrounding tissues and, because of that, I have been comfortable using that form of treatment. My biggest dilemma moving forward, if I do in fact have leptomeningeal carcinomatosis, is how to treat it. Keep in mind the following as you read through the two scenarios: the prognosis WITHOUT treatment is 4-6 weeks while the prognosis WITH treatment is 2-4 months. Not much improvement with treatment. Let me run you through my thought process..
Scenario #1: I have the disease and choose to treat with whole brain radiation
In this scenario, I would likely have to spend 5 days a week at the clinic in Salt Lake City receiving radiation treatment. This would likely last for 6-7 weeks. During this time, I would be away from my home, my wife and family, and my community. Furthermore, I would be dealing with severe nausea, vomiting, headaches, fatigue while going through this. On top of that, the possible long term side effects (assuming I last that long) of whole brain radiation are even worse: loss of vision, motor function, memory, the ability to understand complex ideas, inability to drive...the list just goes on and on. On top of that, my understanding through study is that this form of treatment is more palliative. In other words, it helps with some symptoms, but doesn't actually fight the cancer, especially since melanoma is resistant to radiation.
Scenario #2: I have the disease and don't treat with whole brain radiation
In my studying, I've found that traditional forms of immunotherapy, which is an option for me, has been shown to prolong life with this disease. The side effects of immunotherapy are very minimal, but can have positive effects with the cancer in my body overall, as well as in my brain. This may prolong my life for some time without needing to resort to whole brain radiation, which, by the account of Dr. Burt, is a last resort and generally doesn't improve prognosis much.
So these are my two options if I have the disease. Without the disease, obviously the scenario shifts quite dramatically, but I need to be prepared to make a decision. In order to help with this, I reached out for a priesthood blessing. I find comfort in these blessings. They provide additional guidance and counsel from the Lord and they help me quite a bit. I don't tend to share the entirety of my blessings because they are a personal, spiritual moment between me and God. That being said, one comment really stood out to me. I was told that no matter what I choose, I will be blessed. Wow. What a promise! But why?
Well... I've pondered on this for a while now. Why doesn't it matter what I choose? I think the more important question is about how I qualify for blessings. Blessings from the Lord aren't dependent on which course of cancer treatment I choose. Blessings from the Lord are predicated upon obedience to His laws and commandments. If I keep my covenants and strive to be obedient, I qualify myself for blessings from God. I think that all too often we agonize over which decision to make... Which college do I go to? Which job do I take? Where do we move our family to?
While it is essential that we include the Lord in these decisions a la prayer, scripture study, fasting, temple attendance, etc. and seek out His counsel, the decision is ultimately ours. In some instances, the Lord might nudge you in a certain direction. In some instances, there really might be a "wrong" choice, but I believe these instances are generally relatively clear. Let's say that I'm choosing between Utah and BYU for college. While there is clearly a wrong choice here...just kidding all of you BYU fans... So back to my decision between Utah and BYU. If the Lord nudges me toward Utah, but I miss the nudge and choose BYU, will the Lord withhold blessings from me because I didn't choose Utah? My belief is a resounding no. Heavenly Father desires to bless all of His children and, like I said, those blessings are predicated on living righteously. So even if I miss the nudge and choose BYU, God will still bless me and do all that He can to mold me into the person He needs me to be. Hopefully that makes sense... I don't believe there is only one path in this life for each of us. The paths are countless and we can be blessed no matter which path we walk, as long as we keep God involved.
So with this new understanding in mind, I went to the Lord with my decision. I have ultimately decided to forego the traditional form of treatment of this disease. I will not engage in whole brain radiation. It doesn't sit well with me. I believe I have a work to do in this life and I want to be as close to who I am as I can be.
In addition to this choice comes my belief that the cure for this disease isn't at a hospital. I believe the cure is in the natural world. I always have. It may seem odd to many of you, but when a doctor tells you that they can't cure you, you come to understand that their ability to help is limited. However, I believe God has provided us with all we need to survive and thrive in this world. In addition to starting immunotherapy, which began on June 20th, I still do my strict diet formulated by Dr. Budwig. I have also resumed working with the kinesiologist in Wales. We have also decided to add hyperbaric oxygen therapy (HBOT) to my regimen. The chain of events behind this decision is remarkable in my opinion. Let me explain...
When I was first diagnosed, we did extensive research into all forms of treatment. One that we came across was HBOT. However, it was difficult to access and didn't seem thorough enough. So, we dismissed it. While studying out our decision with whole brain radiation, we attended the temple last week. Shortly after arriving back home, I was in the kitchen making lunch. I decided to open up the Ensign and pick back up where I'd left off. The story I read was about a woman whose husband had been injured in a tractor accident and she ultimately testified of a self-reliance class that helped her build her own flower business. However, as she discussed her husband's injuries, she mentioned HBOT. It was in a short list of other treatments, but when I read the words I was overcome with the Spirit and those memories from September flooded back. Of all the stories to read... of all the treatments they could have done... of all the treatments they decided to list... Let's continue! So I told Kim. We both jumped online and started looking. One of the very first websites I went to talked about how HBOT improves oxygen flow to the cerebrospinal fluid. Uh...are you kidding me?! That's never come up in any research of mine for any alternative form of treatment. But here it was! Just what I've been looking for. We ended up finding a company out of California that rents out chambers and we began pondering on this decision. That very afternoon, while sitting at our booth at the pageant, a couple (I believe it was actually the very first couple to approach us) approached and took some wristbands. They began to tell us of a friend/relative that had dealt with breast cancer. After reconstructive surgery, she had an infection in her breast. To help treat this they used...can you guess? That's correct! HBOT! The Lord works in mysterious ways. Sometimes not so mysterious...but everything pointed to this therapy. It all seemed to just fall into place within a matter of hours. So we've decided to add HBOT to my course of treatment. Hopefully within the next week we will have a chamber set up in the house. Come say hi! haha
So briefly... There isn't much science into HBOT and cancer. It's not a viable form of treatment financially for big hospitals that fight caner. In order to get into clinical studies, you need to pour hundreds of millions of dollars in order to get FDA approval for it. That's why cancer drugs are so expensive. HBOT would have minimal returns and just isn't a viable option. Anyway... Back in the mid-1900's, Otto Warburg did a lot of research into cancer cells and how they function. His research indicated that cancer thrives in an anaerobic state and uses fermentation to grow. The theory, then, was that flooding cancer cells with oxygen would be detrimental to the cancer cell. What he found is that, if enough oxygen is given to the cancer cell, it can eventually push the cancer cell back to apoptosis, which is the cells natural way of self-regulating. In other words, the cancer cell would eventually kill itself, which cancer cells aren't programmed to do. HBOT also increases the flow of drugs and supplements to the body via increased oxygen. So, my immunotherapy drugs and supplements from White Sage should, theoretically, be more effective as a result. We shall see!
Anyway... Decisions can be difficult. These are some of the decisions that I've made. I feel good about them. Understanding my relationship with Heavenly Father and His desire to bless me helps me to move forward in confidence. I trust in Him. Please don't agonize too much about making wrong choices. God will still bless you. He loves you and wants you to succeed. Trust in Him and be willing to step into the dark, knowing that He will eventually provide the light needed.
Here are some pictures from my immunotherapy session...
From the get-go, whole brain radiation has been something I wanted to avoid. I've come to understand the dangerous and debilitating side effects of chemotherapy and radiation. I'm not too keen on using those forms of treatment with my body. That being said, the targeted form of radiation seems to have minimal side effects on surrounding tissues and, because of that, I have been comfortable using that form of treatment. My biggest dilemma moving forward, if I do in fact have leptomeningeal carcinomatosis, is how to treat it. Keep in mind the following as you read through the two scenarios: the prognosis WITHOUT treatment is 4-6 weeks while the prognosis WITH treatment is 2-4 months. Not much improvement with treatment. Let me run you through my thought process..
Scenario #1: I have the disease and choose to treat with whole brain radiation
In this scenario, I would likely have to spend 5 days a week at the clinic in Salt Lake City receiving radiation treatment. This would likely last for 6-7 weeks. During this time, I would be away from my home, my wife and family, and my community. Furthermore, I would be dealing with severe nausea, vomiting, headaches, fatigue while going through this. On top of that, the possible long term side effects (assuming I last that long) of whole brain radiation are even worse: loss of vision, motor function, memory, the ability to understand complex ideas, inability to drive...the list just goes on and on. On top of that, my understanding through study is that this form of treatment is more palliative. In other words, it helps with some symptoms, but doesn't actually fight the cancer, especially since melanoma is resistant to radiation.
Scenario #2: I have the disease and don't treat with whole brain radiation
In my studying, I've found that traditional forms of immunotherapy, which is an option for me, has been shown to prolong life with this disease. The side effects of immunotherapy are very minimal, but can have positive effects with the cancer in my body overall, as well as in my brain. This may prolong my life for some time without needing to resort to whole brain radiation, which, by the account of Dr. Burt, is a last resort and generally doesn't improve prognosis much.
So these are my two options if I have the disease. Without the disease, obviously the scenario shifts quite dramatically, but I need to be prepared to make a decision. In order to help with this, I reached out for a priesthood blessing. I find comfort in these blessings. They provide additional guidance and counsel from the Lord and they help me quite a bit. I don't tend to share the entirety of my blessings because they are a personal, spiritual moment between me and God. That being said, one comment really stood out to me. I was told that no matter what I choose, I will be blessed. Wow. What a promise! But why?
Well... I've pondered on this for a while now. Why doesn't it matter what I choose? I think the more important question is about how I qualify for blessings. Blessings from the Lord aren't dependent on which course of cancer treatment I choose. Blessings from the Lord are predicated upon obedience to His laws and commandments. If I keep my covenants and strive to be obedient, I qualify myself for blessings from God. I think that all too often we agonize over which decision to make... Which college do I go to? Which job do I take? Where do we move our family to?
While it is essential that we include the Lord in these decisions a la prayer, scripture study, fasting, temple attendance, etc. and seek out His counsel, the decision is ultimately ours. In some instances, the Lord might nudge you in a certain direction. In some instances, there really might be a "wrong" choice, but I believe these instances are generally relatively clear. Let's say that I'm choosing between Utah and BYU for college. While there is clearly a wrong choice here...just kidding all of you BYU fans... So back to my decision between Utah and BYU. If the Lord nudges me toward Utah, but I miss the nudge and choose BYU, will the Lord withhold blessings from me because I didn't choose Utah? My belief is a resounding no. Heavenly Father desires to bless all of His children and, like I said, those blessings are predicated on living righteously. So even if I miss the nudge and choose BYU, God will still bless me and do all that He can to mold me into the person He needs me to be. Hopefully that makes sense... I don't believe there is only one path in this life for each of us. The paths are countless and we can be blessed no matter which path we walk, as long as we keep God involved.
So with this new understanding in mind, I went to the Lord with my decision. I have ultimately decided to forego the traditional form of treatment of this disease. I will not engage in whole brain radiation. It doesn't sit well with me. I believe I have a work to do in this life and I want to be as close to who I am as I can be.
In addition to this choice comes my belief that the cure for this disease isn't at a hospital. I believe the cure is in the natural world. I always have. It may seem odd to many of you, but when a doctor tells you that they can't cure you, you come to understand that their ability to help is limited. However, I believe God has provided us with all we need to survive and thrive in this world. In addition to starting immunotherapy, which began on June 20th, I still do my strict diet formulated by Dr. Budwig. I have also resumed working with the kinesiologist in Wales. We have also decided to add hyperbaric oxygen therapy (HBOT) to my regimen. The chain of events behind this decision is remarkable in my opinion. Let me explain...
When I was first diagnosed, we did extensive research into all forms of treatment. One that we came across was HBOT. However, it was difficult to access and didn't seem thorough enough. So, we dismissed it. While studying out our decision with whole brain radiation, we attended the temple last week. Shortly after arriving back home, I was in the kitchen making lunch. I decided to open up the Ensign and pick back up where I'd left off. The story I read was about a woman whose husband had been injured in a tractor accident and she ultimately testified of a self-reliance class that helped her build her own flower business. However, as she discussed her husband's injuries, she mentioned HBOT. It was in a short list of other treatments, but when I read the words I was overcome with the Spirit and those memories from September flooded back. Of all the stories to read... of all the treatments they could have done... of all the treatments they decided to list... Let's continue! So I told Kim. We both jumped online and started looking. One of the very first websites I went to talked about how HBOT improves oxygen flow to the cerebrospinal fluid. Uh...are you kidding me?! That's never come up in any research of mine for any alternative form of treatment. But here it was! Just what I've been looking for. We ended up finding a company out of California that rents out chambers and we began pondering on this decision. That very afternoon, while sitting at our booth at the pageant, a couple (I believe it was actually the very first couple to approach us) approached and took some wristbands. They began to tell us of a friend/relative that had dealt with breast cancer. After reconstructive surgery, she had an infection in her breast. To help treat this they used...can you guess? That's correct! HBOT! The Lord works in mysterious ways. Sometimes not so mysterious...but everything pointed to this therapy. It all seemed to just fall into place within a matter of hours. So we've decided to add HBOT to my course of treatment. Hopefully within the next week we will have a chamber set up in the house. Come say hi! haha
So briefly... There isn't much science into HBOT and cancer. It's not a viable form of treatment financially for big hospitals that fight caner. In order to get into clinical studies, you need to pour hundreds of millions of dollars in order to get FDA approval for it. That's why cancer drugs are so expensive. HBOT would have minimal returns and just isn't a viable option. Anyway... Back in the mid-1900's, Otto Warburg did a lot of research into cancer cells and how they function. His research indicated that cancer thrives in an anaerobic state and uses fermentation to grow. The theory, then, was that flooding cancer cells with oxygen would be detrimental to the cancer cell. What he found is that, if enough oxygen is given to the cancer cell, it can eventually push the cancer cell back to apoptosis, which is the cells natural way of self-regulating. In other words, the cancer cell would eventually kill itself, which cancer cells aren't programmed to do. HBOT also increases the flow of drugs and supplements to the body via increased oxygen. So, my immunotherapy drugs and supplements from White Sage should, theoretically, be more effective as a result. We shall see!
Anyway... Decisions can be difficult. These are some of the decisions that I've made. I feel good about them. Understanding my relationship with Heavenly Father and His desire to bless me helps me to move forward in confidence. I trust in Him. Please don't agonize too much about making wrong choices. God will still bless you. He loves you and wants you to succeed. Trust in Him and be willing to step into the dark, knowing that He will eventually provide the light needed.
Here are some pictures from my immunotherapy session...
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