2 distinct options - no clear choice yet
Hi there. I had two people this week tell me that writing down my thoughts in the blog as I go through this thing has helped them or a family member. I feel a bit self conscious about it and the days are so full right now that it's hard for me to journal as much as I would like. The days feel like segmented, independent blocks of time; it seems I feel and think differently one day from the next. I wonder if a day will ever not be centered on cancer again; I hear this is normal.
When I called the blog, "When the Rubber Meets the Road," it meant two things to me. Is my faith real and, now that I have probably the biggest and hardest marathon of my life to face, will I put my faith in God or will I put my faith elsewhere out of fear or confusion or money or whatever. The other area is the concept of wellness. Do I believe the body is designed, to be healthy in the face of disease and chronic stress from our environment, or do I default to the belief that the 'experts' know best - even when they don't rely on this - they rely on synthetic, harsh, damaging methods without taking God or the body's own abilities into account.
God is God and I know that. He has been so faithful to lead me to 'green pastures' in my life. I had a glimpse last week of gratitude for this thing. I had prayed several months ago for help in balancing my life. I live frenetically and have been having trouble figuring out why and how to change it. I sense God knows exactly what I need to change - and he's got my attention. I also know that many others are going to be dealing with this kind of a diagnosis, and maybe the grappling I'm doing with all of this now will help them find their path and have the courage to stand on convictions, trust the leading of God, and to choose what they feel is right, not just what they are told.
To summarize where I'm at --I want to trust that I have found a way to fight this in the Cancer Center for Healing in Irvine combined with the Hoxsey Biomedical Protocol from Mexico. At the CCH, they put together dozens of therapies that strengthen the body; it's like finding a place with Dr. Axe, Dr. Oz, Sanjay Gupta, Deepok Chopra, Jack LaLain, Dr. Shaklee, ... all come together in one place. One of their tools is still chemotherapy, but they chose the drugs for the chemo by sending the patient's blood to a lab in Greece where they analyze it and test it against all the chemo drugs out there to see what actually destroys their particular cancer cells.
The experts at City of Hope want to use a protocol that they use with anyone presenting with this type of lymphoma. It's call CHOEP and they would want me to consider adding another drug for a clinical trial. CHOEP stands for Cyclophosphamide, Hydroxydaunorubicin, Oncovin, Etoposide, Prednisone. I can't remember the other drug they may want to add, that "could increase the toxicity." This regimen would be put into my veins for 3 days every 3 weeks for 18 weeks, along with 3 more "supporting medications" and 8 "outpatient medications" possibly used too . Toxic substances that "we know cause cancer" are invited to kill off everything they touch in the hopes that they will kill cancer cells enough that my body will then be able to fight - although they all acknowledge that the body is weakened to the point of wondering if it can recover. I will lose my hair and eye lashes and eye brows. The doctors say not to worry - that it will grow back. I just met a person the other day whose eyebrows and eye lashes didn't grow back. There is a joke in there somewhere, about turning into our parents - my mom drew on her eyebrows since I can remember and here I am, turning into her. I should also expect mouth sores and to lose weight and feel horrible.
If the cancer goes into remission (yes, I say 'if' here because this is T Cell Lymphoma - it doesn't respond as well as the more common B Cell Lymphomas), then they will give me a shot to accelerate my recovery over a 10 day period, take my own blood (hopefully - otherwise I need a donor), take out the stem cells they need and freeze them, and then slam my body with drugs again to destroy my bone marrow and, as one person described it - take you to death's door. Then, they reintroduce the stem cells in the hopes that those cells will grow into new bone marrow and never turn to cancer.This type of stem cell transplant may also be called high-dose chemotherapy with autologous stem cell rescue. ... It takes about 24 hours for your stem cells to reach the bone marrow. Then they start to grow, multiply, and help the marrow make healthy blood cells again. This procedure would warrant a 4 week stay at City of Hope. Then a 3 - 4 month recovery before returning to work. That adds up to a 9 month process that just scares the heck out of me.
The literature all warns that this is rare and they really don't have a good "Standard of Care" established. However, when the doctor considered the regional expert on this disease met with us, she reassured us that this is what she would be doing for herself or a family member. There is no doubt in our minds that she was being completely honest.
For me, right now, I seem to have a 2nd choice: trust the Hoxsey protocol of herbs, supplements, and diet combined with the other therapies suggested and provided by the Cancer Center for Healing. This still may involve chemotherapy drugs such as Cytarabine, MTX, and Fludarabine. These three drugs were shown in the tests they do at the lab in Greece, to work best on the cancer cells found in my blood. They also measure the amount of CTC's, Circulating Tumor Cells, in the blood. Mine is 6.4cells/ml which, for my age, puts me in an intermediate to high cancer load. They also found a high risk of migration-invasion (metastasis) and angiogenesis (new cancer cell formation). 0 CTC's would mean no cancer found. By the way, people come to this place to get their CTC's checked, just to see if they have cancer floating around in their bodies.
Using this chemo protocol would be combined with other 'natural' compounds the lab found beneficial for me, specifically. These include IVs of various naturally occurring substances like Vitamins C, D, and Curcumin. (there are many more). The side effects of this chemo are generally milder than those of CHOEP. But, the "experts" in the US aren't using this protocol. As I read the literature on PUBMED, I found fragmented studies on piece of all of this. Of course there are no studies I can find of actual patients with this same lymphoma using this alternative. On the other hand, the CHOEP (conventional chemo) gives a poor prognosis in the studies.
And then...the doctor asks what me want to do.
And I just can't grasp that reassurance that one is the better decision for me in this case. Back to prayer and I need to go start my daily morning regime of detox methods, exercise, and more (about a 2 hour process). I'll share the details on that fun later.
My advice, start juicing and exercising and get rid of processed foods and sugar that feed cancer. We swim in a pool of toxins - your body needs help to fight them. Hugs.
When I called the blog, "When the Rubber Meets the Road," it meant two things to me. Is my faith real and, now that I have probably the biggest and hardest marathon of my life to face, will I put my faith in God or will I put my faith elsewhere out of fear or confusion or money or whatever. The other area is the concept of wellness. Do I believe the body is designed, to be healthy in the face of disease and chronic stress from our environment, or do I default to the belief that the 'experts' know best - even when they don't rely on this - they rely on synthetic, harsh, damaging methods without taking God or the body's own abilities into account.
God is God and I know that. He has been so faithful to lead me to 'green pastures' in my life. I had a glimpse last week of gratitude for this thing. I had prayed several months ago for help in balancing my life. I live frenetically and have been having trouble figuring out why and how to change it. I sense God knows exactly what I need to change - and he's got my attention. I also know that many others are going to be dealing with this kind of a diagnosis, and maybe the grappling I'm doing with all of this now will help them find their path and have the courage to stand on convictions, trust the leading of God, and to choose what they feel is right, not just what they are told.
To summarize where I'm at --I want to trust that I have found a way to fight this in the Cancer Center for Healing in Irvine combined with the Hoxsey Biomedical Protocol from Mexico. At the CCH, they put together dozens of therapies that strengthen the body; it's like finding a place with Dr. Axe, Dr. Oz, Sanjay Gupta, Deepok Chopra, Jack LaLain, Dr. Shaklee, ... all come together in one place. One of their tools is still chemotherapy, but they chose the drugs for the chemo by sending the patient's blood to a lab in Greece where they analyze it and test it against all the chemo drugs out there to see what actually destroys their particular cancer cells.
The experts at City of Hope want to use a protocol that they use with anyone presenting with this type of lymphoma. It's call CHOEP and they would want me to consider adding another drug for a clinical trial. CHOEP stands for Cyclophosphamide, Hydroxydaunorubicin, Oncovin, Etoposide, Prednisone. I can't remember the other drug they may want to add, that "could increase the toxicity." This regimen would be put into my veins for 3 days every 3 weeks for 18 weeks, along with 3 more "supporting medications" and 8 "outpatient medications" possibly used too . Toxic substances that "we know cause cancer" are invited to kill off everything they touch in the hopes that they will kill cancer cells enough that my body will then be able to fight - although they all acknowledge that the body is weakened to the point of wondering if it can recover. I will lose my hair and eye lashes and eye brows. The doctors say not to worry - that it will grow back. I just met a person the other day whose eyebrows and eye lashes didn't grow back. There is a joke in there somewhere, about turning into our parents - my mom drew on her eyebrows since I can remember and here I am, turning into her. I should also expect mouth sores and to lose weight and feel horrible.
If the cancer goes into remission (yes, I say 'if' here because this is T Cell Lymphoma - it doesn't respond as well as the more common B Cell Lymphomas), then they will give me a shot to accelerate my recovery over a 10 day period, take my own blood (hopefully - otherwise I need a donor), take out the stem cells they need and freeze them, and then slam my body with drugs again to destroy my bone marrow and, as one person described it - take you to death's door. Then, they reintroduce the stem cells in the hopes that those cells will grow into new bone marrow and never turn to cancer.This type of stem cell transplant may also be called high-dose chemotherapy with autologous stem cell rescue. ... It takes about 24 hours for your stem cells to reach the bone marrow. Then they start to grow, multiply, and help the marrow make healthy blood cells again. This procedure would warrant a 4 week stay at City of Hope. Then a 3 - 4 month recovery before returning to work. That adds up to a 9 month process that just scares the heck out of me.
The literature all warns that this is rare and they really don't have a good "Standard of Care" established. However, when the doctor considered the regional expert on this disease met with us, she reassured us that this is what she would be doing for herself or a family member. There is no doubt in our minds that she was being completely honest.
For me, right now, I seem to have a 2nd choice: trust the Hoxsey protocol of herbs, supplements, and diet combined with the other therapies suggested and provided by the Cancer Center for Healing. This still may involve chemotherapy drugs such as Cytarabine, MTX, and Fludarabine. These three drugs were shown in the tests they do at the lab in Greece, to work best on the cancer cells found in my blood. They also measure the amount of CTC's, Circulating Tumor Cells, in the blood. Mine is 6.4cells/ml which, for my age, puts me in an intermediate to high cancer load. They also found a high risk of migration-invasion (metastasis) and angiogenesis (new cancer cell formation). 0 CTC's would mean no cancer found. By the way, people come to this place to get their CTC's checked, just to see if they have cancer floating around in their bodies.
Using this chemo protocol would be combined with other 'natural' compounds the lab found beneficial for me, specifically. These include IVs of various naturally occurring substances like Vitamins C, D, and Curcumin. (there are many more). The side effects of this chemo are generally milder than those of CHOEP. But, the "experts" in the US aren't using this protocol. As I read the literature on PUBMED, I found fragmented studies on piece of all of this. Of course there are no studies I can find of actual patients with this same lymphoma using this alternative. On the other hand, the CHOEP (conventional chemo) gives a poor prognosis in the studies.
And then...the doctor asks what me want to do.
And I just can't grasp that reassurance that one is the better decision for me in this case. Back to prayer and I need to go start my daily morning regime of detox methods, exercise, and more (about a 2 hour process). I'll share the details on that fun later.
My advice, start juicing and exercising and get rid of processed foods and sugar that feed cancer. We swim in a pool of toxins - your body needs help to fight them. Hugs.
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