Big scan day tomorrow. Results in a week.
Hi There,
It's been awhile.
Tomorrow is a big day. PET Scan day. I have opted to do only 1 Pet Scan annually, which is the only way to know if the lymphoma is growing or not (besides invasive biopsies). This scan could be a huge turning point. To be honest, I know the lymph nodes in my groin and neck are bigger. Sometimes I have terrible swelling behind my knees where nodes swell into hard balls, making it hard to walk normally. My hands and feet are almost always swollen but only hurt sometimes. I tend to blame myself for it all, thinking my imperfect diet is doing it but I have been unable to isolate what might be causing it. When the swelling is painful, my wrists and ankles hurt and one wrist appears to be permanently changed, looking as if I had a fracture heal badly. I was tested for Rheumatoid Arthritis but it came back negative. My tonsils appear to be very swollen but I think that is actually swelling from the lymph nodes in my neck.
I am in the middle of a cannabis protocol developed by a man named Rick Simpson. He found that large amounts of cannabis could turn cancers around. I have come to know several people over the past two years who are stoned out of their mind trying to get to and then take the 1 gram daily. I have found that doing it as a suppository leaves me with no high although I do think it makes me groggy during the day. I also take capsules of the crushed bud morning and night that is supposed to help with the inflammation. If cannabis isn't heated, it doesn't make you high so I have no effect from these capsules. After 3 months, people generally reduce to a maintenance dose of 1/4 gram once weekly.
I have been on Low Dose Naltrexone and Melatonin (30mg) nightly for awhile now. These have been shown to inhibit cancer growth and increase cancer cell apoptosis (death). They are easy to take but I have no idea of they are working for me. The melatonin is also for sleep that is so important for the immune system, healing, detoxifying...
I do an infrared sauna 1 - 2X/week and a super hot epson salt bath right after to hopefully draw out some toxins and heavy medals, which I have tested for but don't want to undergo chelation which could upset the apple cart in a negative way.
It has been really hard to do the full supplement regime but I've tried to keep up morning and night with the essentials.
Andy keeps fresh salads made, which I eat daily for lunch. He also keep my Essiac Tea made - a thick dirty tea resembling muddy water that has been shown to help with cancer. I shoot for 3-6 oz glasses a day. He also juices carrots, celery, beets, and ginger for me. I aim for 3 - 8 oz glasses of that daily. He could be in Colorado, which is where he would like to be. Instead, he is with me and does so much to keep me going. I'll never be able to thank God enough for him.
When we are in California, staying with our dear friends, I find doing coffee enemas difficult but I do them 1 - 2X / week when we are in Colorado.
I continue to work but it is a real challenge. I have no sick time so any time I take off for dr. appointments and such, I need to make up with very long days. To say I feel exhausted sometimes is just so inadequate. There are times when driving home at the end of the day feels almost impossible. And, I have serious questions about the health of the building I am in. We have water leaks and water stains in the ceiling tiles everywhere with terrible ventilation. I can retire the end of this year but will have no medical or life insurance. If I work another 2 years, I would have paid PPO medical insurance for Andy and I until we turn 70. I have serious doubts about my ability to do all I should be doing in my position at work and have offered to step into a position with less responsibility. We will see. I love my job and get pretty choked up whenever I think about that.
I haven't been meeting with the Recall Healing therapist because of scheduling conflicts. I've been really down, not able to see the positive in much, not feeling like I have much fight in me. I find it hard to pray and impossible to meditate. Tapping is a technique that can help me, especially with anxiety when it comes up. My therapist suggested Ly-Zyme Forte, a plant based form of lithium. Some testing I had done to look at drugs that could be good or bad for me said lithium is OK so I've been trying it. Can't say it has made much of a difference. I'm pretty typical in that I hate myself for feeling depressed but don't have the energy to pull myself out and keep myself out. And...talking to people about it feels futile and yes, embarrassing.
Depending on what happens with this scan, I may have to take more time off work to go see Dr. Keith Block outside of Chicago. He is an integrative oncologist who specializes in putting into action all that research and many years of experience show help a person more effectively and safely get through conventional treatment. We are considering applying for an Accelerated Death Benefit from my life insurance to help pay for that.
I was offered the clinical trial of CHOEP (5 chemo drugs) and Optivo by the T-cell Lymphoma specialist in Denver. I am so concerned that the raging Epstein Barr Virus I have going on, in combination with these drugs that wipe out your immune system, could be a very bad combination. If I go into remission, they would expect me to do a bone marrow transplant right away, although I have more than one friend that had so much heart damage, they couldn't do the transplant. It is a very dangerous procedure with 20% mortality rate. I have no idea what Dr. Block will think of any of this.
The world feels like a confusing place to me any more. What to eat or not eat has become confusing as has everything else (like politics and the general state of the world). I think something shorted out in me when I thought I had some things figured out and the doctor in Boulder asks me loudly, "You're not eating broccoli and spinach are you?!?" She is concerned that they are goitrogens and I have had thyroid problems including goiters. When spinach and broccoli are not safe, what is? Many of the alternative doctors believe in the ketogenic diet but I find so much against it. I find it very difficult to be vegetarian, let alone vegan. Then, I meet these people that were vegans who get cancer and bam, it takes away any sense of clarity. Yet, animal products are pretty universally considered bad for cancer. I hate protein shakes any more. I'm kind of a mess.
People are so kind to me. They pray for me, tell me I'm brave, encourage me. My husband, kids, grandkids, siblings and other extended family, and so many dear friends mean so much to me. This has all buoyed me through it all and for that I am so so grateful. At this point, I am sure of only one thing - if I am healed of this nasty disease, it will be by the will of God alone because I am thoroughly convinced that I can't do it. Maybe He will use conventional treatment. This next week, I am counting on him to show me though what's going on with my body.
Prayers are appreciated for the scan tomorrow; we will get the results a week later. I'll post the results and our plans from there. This feels big and I am praying for peace and faith through it all. And, I'm praying for you. Sorry I'm not very philosophical or chipper right now. I've been on this earth long enough to know that this funk won't last forever. Thank for caring and reading. Cath
It's been awhile.
Tomorrow is a big day. PET Scan day. I have opted to do only 1 Pet Scan annually, which is the only way to know if the lymphoma is growing or not (besides invasive biopsies). This scan could be a huge turning point. To be honest, I know the lymph nodes in my groin and neck are bigger. Sometimes I have terrible swelling behind my knees where nodes swell into hard balls, making it hard to walk normally. My hands and feet are almost always swollen but only hurt sometimes. I tend to blame myself for it all, thinking my imperfect diet is doing it but I have been unable to isolate what might be causing it. When the swelling is painful, my wrists and ankles hurt and one wrist appears to be permanently changed, looking as if I had a fracture heal badly. I was tested for Rheumatoid Arthritis but it came back negative. My tonsils appear to be very swollen but I think that is actually swelling from the lymph nodes in my neck.
I am in the middle of a cannabis protocol developed by a man named Rick Simpson. He found that large amounts of cannabis could turn cancers around. I have come to know several people over the past two years who are stoned out of their mind trying to get to and then take the 1 gram daily. I have found that doing it as a suppository leaves me with no high although I do think it makes me groggy during the day. I also take capsules of the crushed bud morning and night that is supposed to help with the inflammation. If cannabis isn't heated, it doesn't make you high so I have no effect from these capsules. After 3 months, people generally reduce to a maintenance dose of 1/4 gram once weekly.
I have been on Low Dose Naltrexone and Melatonin (30mg) nightly for awhile now. These have been shown to inhibit cancer growth and increase cancer cell apoptosis (death). They are easy to take but I have no idea of they are working for me. The melatonin is also for sleep that is so important for the immune system, healing, detoxifying...
I do an infrared sauna 1 - 2X/week and a super hot epson salt bath right after to hopefully draw out some toxins and heavy medals, which I have tested for but don't want to undergo chelation which could upset the apple cart in a negative way.
It has been really hard to do the full supplement regime but I've tried to keep up morning and night with the essentials.
Andy keeps fresh salads made, which I eat daily for lunch. He also keep my Essiac Tea made - a thick dirty tea resembling muddy water that has been shown to help with cancer. I shoot for 3-6 oz glasses a day. He also juices carrots, celery, beets, and ginger for me. I aim for 3 - 8 oz glasses of that daily. He could be in Colorado, which is where he would like to be. Instead, he is with me and does so much to keep me going. I'll never be able to thank God enough for him.
When we are in California, staying with our dear friends, I find doing coffee enemas difficult but I do them 1 - 2X / week when we are in Colorado.
I continue to work but it is a real challenge. I have no sick time so any time I take off for dr. appointments and such, I need to make up with very long days. To say I feel exhausted sometimes is just so inadequate. There are times when driving home at the end of the day feels almost impossible. And, I have serious questions about the health of the building I am in. We have water leaks and water stains in the ceiling tiles everywhere with terrible ventilation. I can retire the end of this year but will have no medical or life insurance. If I work another 2 years, I would have paid PPO medical insurance for Andy and I until we turn 70. I have serious doubts about my ability to do all I should be doing in my position at work and have offered to step into a position with less responsibility. We will see. I love my job and get pretty choked up whenever I think about that.
I haven't been meeting with the Recall Healing therapist because of scheduling conflicts. I've been really down, not able to see the positive in much, not feeling like I have much fight in me. I find it hard to pray and impossible to meditate. Tapping is a technique that can help me, especially with anxiety when it comes up. My therapist suggested Ly-Zyme Forte, a plant based form of lithium. Some testing I had done to look at drugs that could be good or bad for me said lithium is OK so I've been trying it. Can't say it has made much of a difference. I'm pretty typical in that I hate myself for feeling depressed but don't have the energy to pull myself out and keep myself out. And...talking to people about it feels futile and yes, embarrassing.
Depending on what happens with this scan, I may have to take more time off work to go see Dr. Keith Block outside of Chicago. He is an integrative oncologist who specializes in putting into action all that research and many years of experience show help a person more effectively and safely get through conventional treatment. We are considering applying for an Accelerated Death Benefit from my life insurance to help pay for that.
I was offered the clinical trial of CHOEP (5 chemo drugs) and Optivo by the T-cell Lymphoma specialist in Denver. I am so concerned that the raging Epstein Barr Virus I have going on, in combination with these drugs that wipe out your immune system, could be a very bad combination. If I go into remission, they would expect me to do a bone marrow transplant right away, although I have more than one friend that had so much heart damage, they couldn't do the transplant. It is a very dangerous procedure with 20% mortality rate. I have no idea what Dr. Block will think of any of this.
The world feels like a confusing place to me any more. What to eat or not eat has become confusing as has everything else (like politics and the general state of the world). I think something shorted out in me when I thought I had some things figured out and the doctor in Boulder asks me loudly, "You're not eating broccoli and spinach are you?!?" She is concerned that they are goitrogens and I have had thyroid problems including goiters. When spinach and broccoli are not safe, what is? Many of the alternative doctors believe in the ketogenic diet but I find so much against it. I find it very difficult to be vegetarian, let alone vegan. Then, I meet these people that were vegans who get cancer and bam, it takes away any sense of clarity. Yet, animal products are pretty universally considered bad for cancer. I hate protein shakes any more. I'm kind of a mess.
People are so kind to me. They pray for me, tell me I'm brave, encourage me. My husband, kids, grandkids, siblings and other extended family, and so many dear friends mean so much to me. This has all buoyed me through it all and for that I am so so grateful. At this point, I am sure of only one thing - if I am healed of this nasty disease, it will be by the will of God alone because I am thoroughly convinced that I can't do it. Maybe He will use conventional treatment. This next week, I am counting on him to show me though what's going on with my body.
Prayers are appreciated for the scan tomorrow; we will get the results a week later. I'll post the results and our plans from there. This feels big and I am praying for peace and faith through it all. And, I'm praying for you. Sorry I'm not very philosophical or chipper right now. I've been on this earth long enough to know that this funk won't last forever. Thank for caring and reading. Cath
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