It's time for a new start
The toughest part of the past 22 months or so has been confusion that has landed me in a somewhat frozen position this last several months. When I first was diagnosed, the oncologists were definite and seemingly confident in their fervent recommendations; they still are. But I knew just a little bit too much to just go along. It's not like I knew enough to know what to do, however.
I landed at the Cancer Center for Healing but the lack of congruence in what I saw there, combined with my inability to ignore caution signs greeting me at every juncture, led me to "try" things and spend a ton of money, but I have never felt like I was on track to actually beat this. I have done things for a few months each, things like the Ketogenic diet, Salecinium IVs, Mistletoe and High Dose Vitamin C IV's, Chinese herbs and electrically charged waters, acupuncture, EVOX therapy, EMDR, Recall Healing, treatment by an intuitive chiropractor, tons of supplements. I struggle to find a consistent exercise regimen with the going back and forth between CA and CO. I spent time at Optimum Health Institute learning to eat raw vegan, tried the AIP diet (autoimmune paleo elimination diet) which was prescribed by a nutritionist after looking at my labs, and I tried to eat according to the Plant Paradox plan for awhile. Right now, I am eating whatever I want and only getting in about 1/2 of the supplements and herbs I should be taking. I still work with a doctor at the Cancer Center for Healing for some labs and help deciding when I need to take time off work, a naturopath in Boulder who specializes in cancer and has helped me zero in on the supplements and thyroid and hormone stuff, and a DO in CA that works with insurance when I need to get my port flushed or want to use IV therapies to boost my immune system.
I feel like I have jabbed at this illness, trying to see what gets a response, only to realize that I haven't believed any of it would actually beat this. For awhile I was checking my Circulating Tumor Cell (CTC) count through a lab in Greece but now my doctors don't believe those are accurate. Negalase tests aren't either. Of course, it doesn't help when the T-cell Lymphoma expert for CO starts the conversation with, "This is not a good cancer to get, you know." He wants me to get regular PET scans to monitor the cancer that "should take off any moment." PET scans use DNA damaging radiation - I'd really like to beat this and not have a new cancer down the road because of those scans so, to the oncologists' frustration, I'm aiming for no more than once a year.
I'm part of too many facebook groups - one for AITL patients going through conventional care, which is so so sad. They go through hell and almost always relapse. I met a woman in Denver with the same kind of cancer who has gone through most of the treatment but has had to stop because of the heart damage it has caused. She has so many of the side effects and takes a ton of drugs. We have met and I went to a Quantum Healing class with her which was interesting and solidified things I already know and need to keep working on. I am part of the Square One group by the Chris Beat Cancer (Chris Wark) followers with raw vegan, extreme juicing, and more. That group at least has success stories to share - lots of them. Of course, there is the occasional death reported. These people are Christian, for the most part, and positive. I've felt inept as I have not been able to follow their plan, even when seeing such success. I keep in touch with several people I have met with cancer during this journey. It's hard when we lose those people. Very hard. We also celebrate each others' successes and keep up with family members of those we've lost, who we came to love while spending weeks or months together in the IV chairs.
One of the greatest blessings was when a terrific lady from the Cancer Center for Healing needed a place to stay and we had a free bedroom. She stayed with us for almost 6 months and we absolutely love her and her husband. She and I are so in the same place - never feeling like we are doing enough, continuing to work and try to maintain lives we love, always battling the messages we've received from the conventional doctors and others that we are delusional in thinking we can do anything about our diagnoses without jumping into surgery, chemo, radiation, and bone marrow transplants.
I had an appointment to get a PET scan this Friday and see the T-cell specialist in Denver Jan. 2. I've decided to cancel these appointments because I just can't go his direction. When I asked him about ways to support the body while going through his 5 drug + 1 clinical trial drug chemo, he shrugged the question off. When I asked if he'd work with my naturopath on these things, he laughed with his colleague who was there to encourage us to jump into the clinical trial.
I've decided that I will choose between 2 pathways by Jan. 1 and will fully commit for 2019. I'm kind of an all-or-nothing person. My birthday is New Years Eve and January 1 has always been a very good day for me to make a new start.
The Chris Beat Cancer program is real although I find it very difficult (raw vegan with mega juicing). But, there are tons of success stories.
The other option is directed by an MD that seems to uniquely combine conventional and integrative oncology, Dr. Keith Block in Chicago. His book, Life Over Cancer, is dauntingly comprehensive. It seems to give me hope of actually overcoming this, rather that trudging along the way I've been. It's so hard, though, to be honest. As I read his diet plan, it is directly contrary to the Plant Paradox information that made so much sense to me: lots of "whole grain goodness." But, there is nothing to say that I can't go to see him and get his opinion on my case, and tailor my own diet, I suppose. He is pretty much vegetarian with some fish and only an occasional serving of meat. I just wonder if he could give me some hope of hitting this hard and actually overcoming it.
I yearn for that - to move forward and have hope of resolution rather than just management. I'm a sprinter, not a marathon runner. I just want to know what to do, do it, and move on. We will see.
I landed at the Cancer Center for Healing but the lack of congruence in what I saw there, combined with my inability to ignore caution signs greeting me at every juncture, led me to "try" things and spend a ton of money, but I have never felt like I was on track to actually beat this. I have done things for a few months each, things like the Ketogenic diet, Salecinium IVs, Mistletoe and High Dose Vitamin C IV's, Chinese herbs and electrically charged waters, acupuncture, EVOX therapy, EMDR, Recall Healing, treatment by an intuitive chiropractor, tons of supplements. I struggle to find a consistent exercise regimen with the going back and forth between CA and CO. I spent time at Optimum Health Institute learning to eat raw vegan, tried the AIP diet (autoimmune paleo elimination diet) which was prescribed by a nutritionist after looking at my labs, and I tried to eat according to the Plant Paradox plan for awhile. Right now, I am eating whatever I want and only getting in about 1/2 of the supplements and herbs I should be taking. I still work with a doctor at the Cancer Center for Healing for some labs and help deciding when I need to take time off work, a naturopath in Boulder who specializes in cancer and has helped me zero in on the supplements and thyroid and hormone stuff, and a DO in CA that works with insurance when I need to get my port flushed or want to use IV therapies to boost my immune system.
I feel like I have jabbed at this illness, trying to see what gets a response, only to realize that I haven't believed any of it would actually beat this. For awhile I was checking my Circulating Tumor Cell (CTC) count through a lab in Greece but now my doctors don't believe those are accurate. Negalase tests aren't either. Of course, it doesn't help when the T-cell Lymphoma expert for CO starts the conversation with, "This is not a good cancer to get, you know." He wants me to get regular PET scans to monitor the cancer that "should take off any moment." PET scans use DNA damaging radiation - I'd really like to beat this and not have a new cancer down the road because of those scans so, to the oncologists' frustration, I'm aiming for no more than once a year.
I'm part of too many facebook groups - one for AITL patients going through conventional care, which is so so sad. They go through hell and almost always relapse. I met a woman in Denver with the same kind of cancer who has gone through most of the treatment but has had to stop because of the heart damage it has caused. She has so many of the side effects and takes a ton of drugs. We have met and I went to a Quantum Healing class with her which was interesting and solidified things I already know and need to keep working on. I am part of the Square One group by the Chris Beat Cancer (Chris Wark) followers with raw vegan, extreme juicing, and more. That group at least has success stories to share - lots of them. Of course, there is the occasional death reported. These people are Christian, for the most part, and positive. I've felt inept as I have not been able to follow their plan, even when seeing such success. I keep in touch with several people I have met with cancer during this journey. It's hard when we lose those people. Very hard. We also celebrate each others' successes and keep up with family members of those we've lost, who we came to love while spending weeks or months together in the IV chairs.
One of the greatest blessings was when a terrific lady from the Cancer Center for Healing needed a place to stay and we had a free bedroom. She stayed with us for almost 6 months and we absolutely love her and her husband. She and I are so in the same place - never feeling like we are doing enough, continuing to work and try to maintain lives we love, always battling the messages we've received from the conventional doctors and others that we are delusional in thinking we can do anything about our diagnoses without jumping into surgery, chemo, radiation, and bone marrow transplants.
I had an appointment to get a PET scan this Friday and see the T-cell specialist in Denver Jan. 2. I've decided to cancel these appointments because I just can't go his direction. When I asked him about ways to support the body while going through his 5 drug + 1 clinical trial drug chemo, he shrugged the question off. When I asked if he'd work with my naturopath on these things, he laughed with his colleague who was there to encourage us to jump into the clinical trial.
I've decided that I will choose between 2 pathways by Jan. 1 and will fully commit for 2019. I'm kind of an all-or-nothing person. My birthday is New Years Eve and January 1 has always been a very good day for me to make a new start.
The Chris Beat Cancer program is real although I find it very difficult (raw vegan with mega juicing). But, there are tons of success stories.
The other option is directed by an MD that seems to uniquely combine conventional and integrative oncology, Dr. Keith Block in Chicago. His book, Life Over Cancer, is dauntingly comprehensive. It seems to give me hope of actually overcoming this, rather that trudging along the way I've been. It's so hard, though, to be honest. As I read his diet plan, it is directly contrary to the Plant Paradox information that made so much sense to me: lots of "whole grain goodness." But, there is nothing to say that I can't go to see him and get his opinion on my case, and tailor my own diet, I suppose. He is pretty much vegetarian with some fish and only an occasional serving of meat. I just wonder if he could give me some hope of hitting this hard and actually overcoming it.
I yearn for that - to move forward and have hope of resolution rather than just management. I'm a sprinter, not a marathon runner. I just want to know what to do, do it, and move on. We will see.
Dear Cathie - I admire you so much! I admire your faith and tenacity. I admire your capacity to handle and process so much information, treatment options, relationships, and work. I admire your ability to capture how you are feeling and write about it here in the blog. I admire your generous heart and compassion for others, even when you have so much going on in your life. There is so much I admire and appreciate about you. I pray for the clarity and direction you seek. I pray for continued strength for this journey. I pray for the hope and healing you need. I pray for you, my friend. We have an awesome God! He hears our prayers. ❤️
ReplyDeleteThank you so much, Steve. I hope you know I admire you deeply as well. I appreciate the encouragement, my friend. Have a very Metry Christmas. See you in Jan.
DeleteThank you for sharing your journey, your faith, your fears. You are so amazing Cathie and I hope you know that all of us reading your blog pray for your health daily. May our Lord Jesus Christ heal you dear friend ❤️
ReplyDeleteThank you, Andrea. So much. Your prayers, and those of so many others, sustain me. I am reminded that I am perfectly safe because of the One you pray to. And I am so blessed by the relationships he’s given me. Have a very Happy New Year!!!!
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