Happy Spring! Yes, but where is it? There are a few rays of sunshine out today and it would be nice if it would stick around a while. (said by a woman that LOVES the rain)
Well I finally submitted to the scans to see what, if anything, was happening to the tumors. I also had the tumor markers taken and the results are mixed. While two of my tumor markers were normal one of them was elevated. The most "accurate" marker was once again normal which it has been four of the last five tests. I do attribute that to Protocel the supplement I am currently using. The serotonin was four times what it should be. The scans show some growth in two of the tumors, one in my liver and one in my stomach. The growth is 3mm, very small. There is also a new tumor in my neck that appears to be in lymph which isn't terribly surprising since we have known it is in my lymph system. Matt, the oncologist, says the Protocel isn't working. I am just not ready to say that yet, with the most sensitive marker being normal four times in the last eight months, so I continue taking the Protocel. I am having another MRI this week or next to have a better look at the tumor in my neck and to check the white spots they found in my brain over a year ago. The white spots are not "supposedly" related to the cancer.
While I am not willing to concede that the Protocel isn't working the news has spurred me to make our arrangements to go to India where we will locate (somehow) the nueroendrocine peptides that I can't get in this country. We have also made the decision for me to stay in an Ayurvedic Hospital for treatment. The nueroendrocine peptides and ayurveda are completely separate treatments. Ayurveda is the oldest medicine in the world and it is ALL natural. We have chosen the facility that I will be at and it is in Hyderabad, India. They have asked me to stay for 50 days to start with and I will do that. We have also found a western medicine doctor there that is trying to help us locate the peptides. I have sent the formula we are looking for and are waiting to hear back from them. Beyond that we don't have anything else in place. We are applying for visa's and trying to work out all the details of how to make this all happen. I do know that Jeff will be with me for part of my stay and Angie is going to join me for part of it also. The Ayurvedic facility lets someone come and stay with you for peanuts a day. I am very grateful for that. There are MANY MANY pieces to this complicated puzzle, that have been overwhelming at times, but I am certain it will happen. My hope is that we will make it there by the end of May. There may not be any reality to that time frame but I am shooting for it anyway. "God Willing and The Creek don't Rise".
I continue to steam, take Vit D and go to nuerofeedback (biofeedback of the brain). My Vit D plummeted from 80 to 61 last testing. I thought I was having a reaction to it, stopped it for only a week, then lowered my dose to 8,000 IU/day. What I had was Impetigo not a reaction to D. In that short period of time my D dropped markedly. The moral of the story is don't stop taking your D even for a week. I was surprised!
I have been meaning to tell you about the nuerofeedback I have been doing for over a year and keep forgetting. I have been seeing Bev Brashen for this specialty treatment. It is very much like biofeedback of the brain and helps to re-regulate the brains natural, healthy patterns. It has a fascinating history and great success with many disorders including epilepsy, depression, ADD/ADHD, anxiety, sleep and addictions just to name a few. It has helped me to regulate my life long sleep disturbance and bolstered my immune system. It also relaxes me deeply. I have loved doing it and am forever grateful to Bev for having suggested it. Naturally, it has been shunned from mainstream medicine because the pharmaceutical companies can't make any money on it and they can't control it. Do I sound bitter? I really am not. I have just learned more than anyone would want to know about how medicine works, or doesn't, in this country. That is NOT an indictment on the marvelous doctors that practice medicine to help people. We have encounter many such docs on our journey.
We all continue to be unemployed in our household but it has been quite a blessing, in disguise, of course. Jeff is still looking for work and I am glad he hasn't taken anything he hasn't felt really good about. Call me selfish, but I want him to go to India with me! I know he has been happy to spend so much time with Cole and me. Angie being willing and able to come to India and stay at the hospital with me, while observing the treatments, will be a wonderful addition to her education at Bastyr. Cole won't be going to India with us for many reasons. Maybe next time.
Saving the best for last... I want you to know I feel better than I have in two years. Most of my energy has returned and my mind finally seems to have been mostly restored. I can hold information for longer periods of time and my tracking has definitely improved. I am looking forward to trying to regain some of my physical strength and stamina. The plan is for things to keep looking up.
I will keep you posted as India unfolds and definitely from India.
Many blessings,
Mary
Well I finally submitted to the scans to see what, if anything, was happening to the tumors. I also had the tumor markers taken and the results are mixed. While two of my tumor markers were normal one of them was elevated. The most "accurate" marker was once again normal which it has been four of the last five tests. I do attribute that to Protocel the supplement I am currently using. The serotonin was four times what it should be. The scans show some growth in two of the tumors, one in my liver and one in my stomach. The growth is 3mm, very small. There is also a new tumor in my neck that appears to be in lymph which isn't terribly surprising since we have known it is in my lymph system. Matt, the oncologist, says the Protocel isn't working. I am just not ready to say that yet, with the most sensitive marker being normal four times in the last eight months, so I continue taking the Protocel. I am having another MRI this week or next to have a better look at the tumor in my neck and to check the white spots they found in my brain over a year ago. The white spots are not "supposedly" related to the cancer.
While I am not willing to concede that the Protocel isn't working the news has spurred me to make our arrangements to go to India where we will locate (somehow) the nueroendrocine peptides that I can't get in this country. We have also made the decision for me to stay in an Ayurvedic Hospital for treatment. The nueroendrocine peptides and ayurveda are completely separate treatments. Ayurveda is the oldest medicine in the world and it is ALL natural. We have chosen the facility that I will be at and it is in Hyderabad, India. They have asked me to stay for 50 days to start with and I will do that. We have also found a western medicine doctor there that is trying to help us locate the peptides. I have sent the formula we are looking for and are waiting to hear back from them. Beyond that we don't have anything else in place. We are applying for visa's and trying to work out all the details of how to make this all happen. I do know that Jeff will be with me for part of my stay and Angie is going to join me for part of it also. The Ayurvedic facility lets someone come and stay with you for peanuts a day. I am very grateful for that. There are MANY MANY pieces to this complicated puzzle, that have been overwhelming at times, but I am certain it will happen. My hope is that we will make it there by the end of May. There may not be any reality to that time frame but I am shooting for it anyway. "God Willing and The Creek don't Rise".
I continue to steam, take Vit D and go to nuerofeedback (biofeedback of the brain). My Vit D plummeted from 80 to 61 last testing. I thought I was having a reaction to it, stopped it for only a week, then lowered my dose to 8,000 IU/day. What I had was Impetigo not a reaction to D. In that short period of time my D dropped markedly. The moral of the story is don't stop taking your D even for a week. I was surprised!
I have been meaning to tell you about the nuerofeedback I have been doing for over a year and keep forgetting. I have been seeing Bev Brashen for this specialty treatment. It is very much like biofeedback of the brain and helps to re-regulate the brains natural, healthy patterns. It has a fascinating history and great success with many disorders including epilepsy, depression, ADD/ADHD, anxiety, sleep and addictions just to name a few. It has helped me to regulate my life long sleep disturbance and bolstered my immune system. It also relaxes me deeply. I have loved doing it and am forever grateful to Bev for having suggested it. Naturally, it has been shunned from mainstream medicine because the pharmaceutical companies can't make any money on it and they can't control it. Do I sound bitter? I really am not. I have just learned more than anyone would want to know about how medicine works, or doesn't, in this country. That is NOT an indictment on the marvelous doctors that practice medicine to help people. We have encounter many such docs on our journey.
We all continue to be unemployed in our household but it has been quite a blessing, in disguise, of course. Jeff is still looking for work and I am glad he hasn't taken anything he hasn't felt really good about. Call me selfish, but I want him to go to India with me! I know he has been happy to spend so much time with Cole and me. Angie being willing and able to come to India and stay at the hospital with me, while observing the treatments, will be a wonderful addition to her education at Bastyr. Cole won't be going to India with us for many reasons. Maybe next time.
Saving the best for last... I want you to know I feel better than I have in two years. Most of my energy has returned and my mind finally seems to have been mostly restored. I can hold information for longer periods of time and my tracking has definitely improved. I am looking forward to trying to regain some of my physical strength and stamina. The plan is for things to keep looking up.
I will keep you posted as India unfolds and definitely from India.
Many blessings,
Mary
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1 comments:
valerie said...
Mary, both encouraging and somewhat discouraging. As usual you continue to demonstrate a level of courage and optimism that is consistently defying the medical odds of your recovery. I am forever in awe of you. You go girl! Tea soon? Love you.