New PET Scan results. Time to tune up my regimen.
Yesterday felt like a watershed day. After the normal frustrations of records not being sent to the right doctor (nothing goes smoothly at the Cancer Center for Healing), we met with Dr. Virginia Von Shaefer to hear the verdict. It does feel that way - like you are walking into a courtroom to see if all of your efforts are going to be rewarded or if life could take a more difficult turn.
What we crave as patients and loved ones is some certainty. As usual, the reality is that there really isn't any.
The report from the radiologist states that there is some mild (my word) progression of disease from about a year ago when I had the last PET scan. I am relieved because a year ago the City of Hope expert in T-Cell Lymphoma and the pathologists there determined that the cancer was doubling every 34 days, which it clearly is not. I so wish I could forget her parting words, "You can wait to start chemo - but don't wait too long." Ugh. What does that mean?
Dr. Virginia went into the science of what she believes is the best option. I've heard it all before but it was important to me that Andy hear it all. I can't always fully explain what she says once I leave the room. And, this is a marathon when we desperately want it to be a sprint with a finish line. It can wear on us and can cause feelings of futility and frustration.
The way integrative medicine looks at cancer (I'll attempt to accurately sum this up).
1) By removing toxins from your life as much as possible and using methods to remove toxins from your body, you are giving your body a fighting chance at regaining health because these toxins tax your resources.
2) By eating foods that support health, reduce acidity, and lower the stress during digestion on your body, you again help your body have what it needs to heal and thrive. (I've learned that any special diet seems to work for only about 1/3 of people. There is no magic diet for all. Some people thrive on the Ketogenic diet, some raw vegan, some macrobiotic, some extensive juicing, some fasting, others - depending on cultural factors - can be very different.) This is a challenge because our culture is so food oriented - so pleasure oriented. This has been a very big challenge lately.
3) By reducing stress and negative emotions by various therapeutic, stress reduction, and emotion release strategies, you reduce the negative neurochemical cascade of hormones that tear your body (immune system) down and increase the positive hormones. I am using a system called Recall Healing right now, and of course - prayer.
4) By taking supplements and herbs that are indicated for you by tests like the Nutrieval and other means, (the herbalist I go to uses energy medicine / muscle testing as a way to ID needs) you are giving your body what it needs to fight and thrive. This is a very challenging area. If I am perfect, I am taking handfuls of supplements, droppers and capfuls of horrible tasting herbs, drops under by tongue, powders, and suppositories - every hour or so. I'm having trouble keeping up with it all.
5) By identifying common factors of cancer/diseased cells and disrupting processes unique to them (versus healthy cells), you weaken them to the point that your immune system can overcome them (hopefully).
A few examples:
a) Cancer cells have many more glucose receptors than normal cells. There are treatments like Salecinium IV (Orosal is the oral version), which fools the cell into thinking it is taking in sugar but it actually is attached to some ring of something that disrupts the cell's ability to survive or replicate. This is also why you don't want to spike your blood sugar by eating or drinking sweets on their own and limiting sugar intake in general (you're feeding cancer cells that uptake the glucose faster than normal cells).
b) Cancer cells have 400 times the need for iron as normal cells. There is a substance called Gallium Malfolate which disrupts the uptake and utilization of iron which I will restart taking.
c) Cancer cells also have many more electrons than normal cells. I take a group of substances, especially one called Acepton, that is made from seaweed, that is shown to strip electrons from abnormal cells, weakening them and making them more susceptible to the immune system.
Other things:
-Cannabis has been shown to actually fight cancer, not just the symptoms of chemo as most of us think about. To get enough of it in to treat cancer is a challenge, however. I have found that using it rectally gives no psychoactive effects while giving me the chance to get enough into my system. A drawback is that the literature states that when it has effectively cured or controlled cancer, the patient must keep up with a maintenance dose. It's small but it has been a challenge for me to use cannabis at all when I'm traveling or staying with friends (it's a pain to make the suppositories). It is easy to let it go for chunks of time, which could be bad. Does that mean I shouldn't use it at all? It depends on who you talk to or who you read.
-Since the beginning of this journey, I have known people are praying for me. There are just those people who will say they are - and I know it - I can feel it. It means everything to me. We are all so busy and have so many needs to pray for. It is so deeply touching for me and it makes me remember that God is really at the helm. He hears and answers prayer.
Also, I have found a doctor I will consult with June 18 in Boulder, Colorado. Dr. Kirsten West is a naturopath (doctorate in naturopathic medicine) who did an oncology residency with Cancer Centers of America (conventional with naturopathic support). I am hoping she can give me some unique perspective and connect me with good professionals in Colorado that could help me when I'm out there. When I meet with Dr. Virginia in Irvine, I leave there confident in what we are doing. Sometimes I wonder if she is too myopic, however. It bothers me that she does not consult with any other doctors that are treating similar cases. She figures things out on her own and she is brilliant. But wouldn't it be better if all these practitioners were working together and comparing notes? It isn't happening. And...I have absolutely no statistics or testimonials or anything to help give confidence that these ideas actually work for anyone, let alone with the rare T-cell lymphomas.
I remind myself - I am not trusting these doctors. I am trusting God as I ask him to lead me through this long journey. When I'm focused on him, I can actually sing and dance as I pass through. When I start to focus on the perceived dangers, I can get pretty dark and scared. He calls me back to focus on him and I am OK again.
One last thought - about twice a week I have someone fervently plead with me to call "their guy." It's a chiropractor, energy worker, friend that had cancer or who studies it a lot, ... Or, someone will talk to a pharmacist or other practitioner about something I'm doing and they will call me with a stern warning that something I'm doing is wrong or dangerous. I absolutely hate to disappoint people or hurt feelings. It is hard for me to explain why I wouldn't immediately jump to respond to the information.
It is such a natural thing that we trust who we know and I know that everyone is trying to help me. I am up to my neck in this and sometimes one more suggestion makes me feel like I am going under - I can't breathe. I share this primarily to help me remember in the future what this is like - to help me be understanding when people don't take my suggestions or referrals.
We are all on our own path and one of the most challenging parts of this is to learn to trust ourselves as God leads. I don't want to be closed off to new ideas. But I do need to be OK with my decisions and take in suggestions and new information as it is right - for me. And I pray that I will be able to give others the same space to make their own decisions, as needed.
What we crave as patients and loved ones is some certainty. As usual, the reality is that there really isn't any.
The report from the radiologist states that there is some mild (my word) progression of disease from about a year ago when I had the last PET scan. I am relieved because a year ago the City of Hope expert in T-Cell Lymphoma and the pathologists there determined that the cancer was doubling every 34 days, which it clearly is not. I so wish I could forget her parting words, "You can wait to start chemo - but don't wait too long." Ugh. What does that mean?
Dr. Virginia went into the science of what she believes is the best option. I've heard it all before but it was important to me that Andy hear it all. I can't always fully explain what she says once I leave the room. And, this is a marathon when we desperately want it to be a sprint with a finish line. It can wear on us and can cause feelings of futility and frustration.
The way integrative medicine looks at cancer (I'll attempt to accurately sum this up).
1) By removing toxins from your life as much as possible and using methods to remove toxins from your body, you are giving your body a fighting chance at regaining health because these toxins tax your resources.
2) By eating foods that support health, reduce acidity, and lower the stress during digestion on your body, you again help your body have what it needs to heal and thrive. (I've learned that any special diet seems to work for only about 1/3 of people. There is no magic diet for all. Some people thrive on the Ketogenic diet, some raw vegan, some macrobiotic, some extensive juicing, some fasting, others - depending on cultural factors - can be very different.) This is a challenge because our culture is so food oriented - so pleasure oriented. This has been a very big challenge lately.
3) By reducing stress and negative emotions by various therapeutic, stress reduction, and emotion release strategies, you reduce the negative neurochemical cascade of hormones that tear your body (immune system) down and increase the positive hormones. I am using a system called Recall Healing right now, and of course - prayer.
4) By taking supplements and herbs that are indicated for you by tests like the Nutrieval and other means, (the herbalist I go to uses energy medicine / muscle testing as a way to ID needs) you are giving your body what it needs to fight and thrive. This is a very challenging area. If I am perfect, I am taking handfuls of supplements, droppers and capfuls of horrible tasting herbs, drops under by tongue, powders, and suppositories - every hour or so. I'm having trouble keeping up with it all.
5) By identifying common factors of cancer/diseased cells and disrupting processes unique to them (versus healthy cells), you weaken them to the point that your immune system can overcome them (hopefully).
A few examples:
a) Cancer cells have many more glucose receptors than normal cells. There are treatments like Salecinium IV (Orosal is the oral version), which fools the cell into thinking it is taking in sugar but it actually is attached to some ring of something that disrupts the cell's ability to survive or replicate. This is also why you don't want to spike your blood sugar by eating or drinking sweets on their own and limiting sugar intake in general (you're feeding cancer cells that uptake the glucose faster than normal cells).
b) Cancer cells have 400 times the need for iron as normal cells. There is a substance called Gallium Malfolate which disrupts the uptake and utilization of iron which I will restart taking.
c) Cancer cells also have many more electrons than normal cells. I take a group of substances, especially one called Acepton, that is made from seaweed, that is shown to strip electrons from abnormal cells, weakening them and making them more susceptible to the immune system.
Other things:
-Cannabis has been shown to actually fight cancer, not just the symptoms of chemo as most of us think about. To get enough of it in to treat cancer is a challenge, however. I have found that using it rectally gives no psychoactive effects while giving me the chance to get enough into my system. A drawback is that the literature states that when it has effectively cured or controlled cancer, the patient must keep up with a maintenance dose. It's small but it has been a challenge for me to use cannabis at all when I'm traveling or staying with friends (it's a pain to make the suppositories). It is easy to let it go for chunks of time, which could be bad. Does that mean I shouldn't use it at all? It depends on who you talk to or who you read.
-Since the beginning of this journey, I have known people are praying for me. There are just those people who will say they are - and I know it - I can feel it. It means everything to me. We are all so busy and have so many needs to pray for. It is so deeply touching for me and it makes me remember that God is really at the helm. He hears and answers prayer.
Also, I have found a doctor I will consult with June 18 in Boulder, Colorado. Dr. Kirsten West is a naturopath (doctorate in naturopathic medicine) who did an oncology residency with Cancer Centers of America (conventional with naturopathic support). I am hoping she can give me some unique perspective and connect me with good professionals in Colorado that could help me when I'm out there. When I meet with Dr. Virginia in Irvine, I leave there confident in what we are doing. Sometimes I wonder if she is too myopic, however. It bothers me that she does not consult with any other doctors that are treating similar cases. She figures things out on her own and she is brilliant. But wouldn't it be better if all these practitioners were working together and comparing notes? It isn't happening. And...I have absolutely no statistics or testimonials or anything to help give confidence that these ideas actually work for anyone, let alone with the rare T-cell lymphomas.
I remind myself - I am not trusting these doctors. I am trusting God as I ask him to lead me through this long journey. When I'm focused on him, I can actually sing and dance as I pass through. When I start to focus on the perceived dangers, I can get pretty dark and scared. He calls me back to focus on him and I am OK again.
One last thought - about twice a week I have someone fervently plead with me to call "their guy." It's a chiropractor, energy worker, friend that had cancer or who studies it a lot, ... Or, someone will talk to a pharmacist or other practitioner about something I'm doing and they will call me with a stern warning that something I'm doing is wrong or dangerous. I absolutely hate to disappoint people or hurt feelings. It is hard for me to explain why I wouldn't immediately jump to respond to the information.
It is such a natural thing that we trust who we know and I know that everyone is trying to help me. I am up to my neck in this and sometimes one more suggestion makes me feel like I am going under - I can't breathe. I share this primarily to help me remember in the future what this is like - to help me be understanding when people don't take my suggestions or referrals.
We are all on our own path and one of the most challenging parts of this is to learn to trust ourselves as God leads. I don't want to be closed off to new ideas. But I do need to be OK with my decisions and take in suggestions and new information as it is right - for me. And I pray that I will be able to give others the same space to make their own decisions, as needed.
🙏💜🙏💜🙏
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