Dear friends,
A memorial service will be held this Friday, November 30th at noon at St. Raphael's Catholic Church in Rockville, MD. We will celebrate her life and spirit together through music and community. Thank you for your love and support of my mom throughout her journey.
Love,
Erin (Chip) and Nick
https://www.collinsfuneralhome.com/reed-elizabeth-hayes
Betsy's Road Less Traveled
Sunday, November 25, 2018
Friday, October 26, 2018
I SING
"I sing because I'm happy........ I sing because I'm FREE!"
-- from the hymn "His Eye is on the Sparrow"
Well! -- I have made it to the end of the exit ramp. My journey along the Road Less Traveled is at an end.
This post was composed by me before my passing; at my instruction, a loving friend is sharing it with you.
Please do not grieve long, dear friends.
Instead, be happy for me that I have started down a new road -- one that is not fraught with pain, disease, immobility, ennui. No more lying in bed all day, fighting the pain, being waited on and cared for in what is often referred to as "the second childhood." No more coughing uncontrollably when trying to speak or sing.
I can now . . . once again . . . SING.
It may be that some of you cannot share my belief in the never-ending existence of the soul -- that we are not merely physical bodies that happen to be steered by a soul; instead, we are souls that are housed by a physical (and often imperfect) body. Our bodies are our "earthly tents;" our cocoons, the shells that house that butterfly, the soul. The soul never dies; it flits from dimension to dimension and steers our infinite journey.
Imagine that loop that has come to symbolize infinity. Imagine that as we travel from life to life and back again into other dimensions, we carry all of our memories and our accomplishments, our connections with other souls and the love that links us together on that loop. We may bump into one another as we come around the loop and re-connect once again at that lovely place where the loop intersects with itself.
Just as that loop of infinity never ends, our souls never die.
A beloved composer of children's songs, Natalie Sleeth, wrote an anthem that says it better than I can:
In the bulb, there is a flower; in the seed, an apple tree;
in cocoons, a hidden promise -- butterflies will soon be free.
There's a song (!!!) in every silence, seeking word and melody;
there's a dawn in every darkness, bringing hope to you and me.
In the end is our beginning; in our time, infinity (that lovely LOOP!)
In our death, a resurrection; at the end, a victory.
My family will be planning a memorial service; if you are able to come, you can share stories of crazy times together that we have experienced on the loop. Stay tuned to this blog for updates.
Keep the music going on your side of the veil, folks. And know this: we WILL meet again one day.
--- Betsy
-- from the hymn "His Eye is on the Sparrow"
Well! -- I have made it to the end of the exit ramp. My journey along the Road Less Traveled is at an end.
This post was composed by me before my passing; at my instruction, a loving friend is sharing it with you.
Please do not grieve long, dear friends.
Instead, be happy for me that I have started down a new road -- one that is not fraught with pain, disease, immobility, ennui. No more lying in bed all day, fighting the pain, being waited on and cared for in what is often referred to as "the second childhood." No more coughing uncontrollably when trying to speak or sing.
I can now . . . once again . . . SING.
It may be that some of you cannot share my belief in the never-ending existence of the soul -- that we are not merely physical bodies that happen to be steered by a soul; instead, we are souls that are housed by a physical (and often imperfect) body. Our bodies are our "earthly tents;" our cocoons, the shells that house that butterfly, the soul. The soul never dies; it flits from dimension to dimension and steers our infinite journey.
Imagine that loop that has come to symbolize infinity. Imagine that as we travel from life to life and back again into other dimensions, we carry all of our memories and our accomplishments, our connections with other souls and the love that links us together on that loop. We may bump into one another as we come around the loop and re-connect once again at that lovely place where the loop intersects with itself.
Just as that loop of infinity never ends, our souls never die.
A beloved composer of children's songs, Natalie Sleeth, wrote an anthem that says it better than I can:
In the bulb, there is a flower; in the seed, an apple tree;
in cocoons, a hidden promise -- butterflies will soon be free.
There's a song (!!!) in every silence, seeking word and melody;
there's a dawn in every darkness, bringing hope to you and me.
In the end is our beginning; in our time, infinity (that lovely LOOP!)
In our death, a resurrection; at the end, a victory.
My family will be planning a memorial service; if you are able to come, you can share stories of crazy times together that we have experienced on the loop. Stay tuned to this blog for updates.
Keep the music going on your side of the veil, folks. And know this: we WILL meet again one day.
--- Betsy
Thursday, June 28, 2018
The Exit Ramp
Since last posting, I have endured another 3 weeks of Gem-Zar, complete with wicked side effects. Also had a PT/CT scan and saw the oncologist yesterday. The scan report did not reveal any improvement; however, the oncologist thought that on viewing of the CT scan, she felt that the liver showed some decrease in activity. It is the oncologist's opinion that the chemo I have been undergoing has perhaps (?) had some effect on the advancement of the pain from the spinal tumors.
I told the doc that I did not want to continue with the Gem-Zar due to the extremely severe side effects. I needed to make a decision between going off of chemo altogether or trying another IV chemo option. I agreed to try a different one (Abraxane); but I am certain that, if I experience negative side effects, I will stop the chemo altogether and we will go into palliative care / hospice mode.
So the bottom line is that the cancer is advancing and my days here are numbered.
I finally pinned down my oncologist to give me a time-table. This is always a difficult question for patients to ask and for oncologists to answer. "How much time do I have left, doc?" I told my oncologist that I was well aware that I was "on the exit ramp." Could she possibly give me a ball park guestimation of when I might reach the stop sign at the end of that ramp?
Her response was, "Not years; not weeks; months."
Deep down in my gut I sort of knew that this was the case. I have been preparing; getting my ducks in a row. Friends and family have stepped up to help me prepare. Many have come to say their last good-byes. Shelves are being organized (thanks to my wonderful daughter), closets cleaned out, items being given away.
I have derived pleasure (some would call this perverse; but alas, it is the case) in planning the music for my funeral. As a church musician, I have sung and played for probably hundreds of funerals. It does not seem strange for me to be organizing my own parting ceremony; in this way, I will very much be a participant in saying good-bye to everyone.
I don't know if I will be making any more post entries to this blog. This latest news is as difficult to write as I'm sure it is for many of you to read. Thank you for accompanying me on this Road Less Traveled journey. I am grateful for all of the love and support my dear friends and family have spread before me.
My daughter has access to this blog as an administrator and will keep you all posted when I make my way to the end of the exit ramp.
Enjoy each day as a precious gift, everyone. Live with gratitude.
I told the doc that I did not want to continue with the Gem-Zar due to the extremely severe side effects. I needed to make a decision between going off of chemo altogether or trying another IV chemo option. I agreed to try a different one (Abraxane); but I am certain that, if I experience negative side effects, I will stop the chemo altogether and we will go into palliative care / hospice mode.
So the bottom line is that the cancer is advancing and my days here are numbered.
I finally pinned down my oncologist to give me a time-table. This is always a difficult question for patients to ask and for oncologists to answer. "How much time do I have left, doc?" I told my oncologist that I was well aware that I was "on the exit ramp." Could she possibly give me a ball park guestimation of when I might reach the stop sign at the end of that ramp?
Her response was, "Not years; not weeks; months."
Deep down in my gut I sort of knew that this was the case. I have been preparing; getting my ducks in a row. Friends and family have stepped up to help me prepare. Many have come to say their last good-byes. Shelves are being organized (thanks to my wonderful daughter), closets cleaned out, items being given away.
I have derived pleasure (some would call this perverse; but alas, it is the case) in planning the music for my funeral. As a church musician, I have sung and played for probably hundreds of funerals. It does not seem strange for me to be organizing my own parting ceremony; in this way, I will very much be a participant in saying good-bye to everyone.
I don't know if I will be making any more post entries to this blog. This latest news is as difficult to write as I'm sure it is for many of you to read. Thank you for accompanying me on this Road Less Traveled journey. I am grateful for all of the love and support my dear friends and family have spread before me.
My daughter has access to this blog as an administrator and will keep you all posted when I make my way to the end of the exit ramp.
Enjoy each day as a precious gift, everyone. Live with gratitude.
Saturday, April 28, 2018
Children -- Why do We Have Them?
There are probably as many answers to this question as there are children.
A lot of people have children as accidents of nature; maybe they never wanted any in the first place. Yup it happens. But more likely than not, once that child arrives, he/she is welcomed and loved and nurtured and celebrated. Amazing, isn't it? What we thought we didn't really want or need becomes the fulfillment of a dream.
Some may plan -- for years and years, sometimes -- to have a child. They crave the joy of holding that infant, changing that diaper, playing with that toddler in the backyard. The children come and that joy is fulfilled.
I am a mother. I have two children. I was among the "planners." I wanted the family, I welcomed it, I dove into the role headfirst. It was wonderful. I am lucky to have seen my children grow into successful adults, contributors to society and making a difference in the world.
I also have two terrific grandsons, the miraculous result of having a child who, in turn, wanted children. What a bonus!
Now.... here is the best reason of all to have children: They will reflect back to you what you have been to them -- they love you as much as you have loved them all of those years of growing up. Many jokingly refer to this as "payback."
Today I am calling this THE GREAT REWARD.
My children, Erin and Nick, are rallying around me as I go through my pain. They have descended upon me this weekend like teenage groupies on a boy band! Vacuuming, shaking out rugs, changing sheets on beds, sorting mounds and mounds of papers, sorting supplements and meds, food supplies, and clothing. My daughter is the queen of organization. My son has already done a yeoman's job, learning how to flush my PICC line with saline and Heparin, accompanying me to doc visits and medical procedures, applying "bio-freeze" to my aching back, figuring out how to download forms for handicapped parking tags. At the moment, he is scrubbing the bathroom floor as Erin continues to organize the kitchen and prepare food. When I "had" my children, I really had no idea what angels of mercy they would become.
Children -- why do we have them? They give us something to care for; and they care for us. They learn from us; and we from them. What better reason?
A lot of people have children as accidents of nature; maybe they never wanted any in the first place. Yup it happens. But more likely than not, once that child arrives, he/she is welcomed and loved and nurtured and celebrated. Amazing, isn't it? What we thought we didn't really want or need becomes the fulfillment of a dream.
Some may plan -- for years and years, sometimes -- to have a child. They crave the joy of holding that infant, changing that diaper, playing with that toddler in the backyard. The children come and that joy is fulfilled.
I am a mother. I have two children. I was among the "planners." I wanted the family, I welcomed it, I dove into the role headfirst. It was wonderful. I am lucky to have seen my children grow into successful adults, contributors to society and making a difference in the world.
I also have two terrific grandsons, the miraculous result of having a child who, in turn, wanted children. What a bonus!
Now.... here is the best reason of all to have children: They will reflect back to you what you have been to them -- they love you as much as you have loved them all of those years of growing up. Many jokingly refer to this as "payback."
Today I am calling this THE GREAT REWARD.
My children, Erin and Nick, are rallying around me as I go through my pain. They have descended upon me this weekend like teenage groupies on a boy band! Vacuuming, shaking out rugs, changing sheets on beds, sorting mounds and mounds of papers, sorting supplements and meds, food supplies, and clothing. My daughter is the queen of organization. My son has already done a yeoman's job, learning how to flush my PICC line with saline and Heparin, accompanying me to doc visits and medical procedures, applying "bio-freeze" to my aching back, figuring out how to download forms for handicapped parking tags. At the moment, he is scrubbing the bathroom floor as Erin continues to organize the kitchen and prepare food. When I "had" my children, I really had no idea what angels of mercy they would become.
Children -- why do we have them? They give us something to care for; and they care for us. They learn from us; and we from them. What better reason?
Never Say Never
When first traveling this road, I used to say "I will never take chemotherapy." Then two years ago, I went on IV chemo. Never Say Never? Once off of that (just last February), I decided to give the vitamin C a try. I wanted to say Never Chemo, Ever Again. But I didn't actually say it. I just thought it, hoping that my condition would improve.
Well, if the vitamin C infusions have helped, I will never know it. I have gone off of the C therapy earlier than I had planned and am back on chemo.
How did this happen?
I hurt my back. Or.... maybe I didn't actually hurt it myself; maybe the little "twinges" I was feeling in my lower back and hip were the cancer lesions in the bone and spine just waiting to grab me? In any case, they have REALLY grabbed me. I started feeling intense lower back pain the Monday of Holy Week (late March, when I had a lot of piano gigs!!). I went to see a chiropractor right away. She could only do minimal treatments for the back b/c of the cancer that is in my spine and ribs; she was fearful of breaking my bones. So I experienced some relief, but .... well, not really. Then my mid-back started to hurt -- BIG TIME; thought I might have pulled the muscles myself. But it is now almost a month, and the back pain is still so intense that I had to seek out pain med help from my oncologist.
PAIN can change so many things: hopefulness turns to hopelessness, joy turns to anguish. And the whole time you know it's just the pain, but you can't help it. You feel like it's the end, not the beginning. You can no longer "talk yourself out of" any funk you are in. The entire month of April was like that for me. I had a birthday; didn't care. Was finally doing Vitamin C therapy; didn't care. Spring was coming; didn't care.
So when (son) Nick and I met with the oncologist on Thursday seeking pain med assistance, she pretty much asserted that the pain was probably cancer-related, bone-related, spine/rib-related, maybe liver related. I had to face the music; face the reality; with pain leading the way -- time to go back on chemo. Never Say Never. The doc had suggested some different chemo therapies; I just picked one and said "let's go with it."
The heavy-duty pain meds the doc prescribed did nothing for the pain; and they made me nauseous. So I am back to square one with the big P. Nick is trying to find me a place to procure medical marijuana. If anyone can help us with that for the state of Maryland, please let us know.
Back to weekly chemo next week -- same as last time, three weeks on, one week off. One positive thing: they can use the PICC line I had surgically installed for my vitamin C infusions. No arm-pricking! Nice to find a silver lining.
I will seek out more silver linings; I promise. Meanwhile, I think I feel that I am on a downhill trajectory. It is inevitable. Not to be avoided. More on those little philosophies later. Keep praying this prayer: TAKE THE PAIN AWAY!!!
Well, if the vitamin C infusions have helped, I will never know it. I have gone off of the C therapy earlier than I had planned and am back on chemo.
How did this happen?
I hurt my back. Or.... maybe I didn't actually hurt it myself; maybe the little "twinges" I was feeling in my lower back and hip were the cancer lesions in the bone and spine just waiting to grab me? In any case, they have REALLY grabbed me. I started feeling intense lower back pain the Monday of Holy Week (late March, when I had a lot of piano gigs!!). I went to see a chiropractor right away. She could only do minimal treatments for the back b/c of the cancer that is in my spine and ribs; she was fearful of breaking my bones. So I experienced some relief, but .... well, not really. Then my mid-back started to hurt -- BIG TIME; thought I might have pulled the muscles myself. But it is now almost a month, and the back pain is still so intense that I had to seek out pain med help from my oncologist.
PAIN can change so many things: hopefulness turns to hopelessness, joy turns to anguish. And the whole time you know it's just the pain, but you can't help it. You feel like it's the end, not the beginning. You can no longer "talk yourself out of" any funk you are in. The entire month of April was like that for me. I had a birthday; didn't care. Was finally doing Vitamin C therapy; didn't care. Spring was coming; didn't care.
So when (son) Nick and I met with the oncologist on Thursday seeking pain med assistance, she pretty much asserted that the pain was probably cancer-related, bone-related, spine/rib-related, maybe liver related. I had to face the music; face the reality; with pain leading the way -- time to go back on chemo. Never Say Never. The doc had suggested some different chemo therapies; I just picked one and said "let's go with it."
The heavy-duty pain meds the doc prescribed did nothing for the pain; and they made me nauseous. So I am back to square one with the big P. Nick is trying to find me a place to procure medical marijuana. If anyone can help us with that for the state of Maryland, please let us know.
Back to weekly chemo next week -- same as last time, three weeks on, one week off. One positive thing: they can use the PICC line I had surgically installed for my vitamin C infusions. No arm-pricking! Nice to find a silver lining.
I will seek out more silver linings; I promise. Meanwhile, I think I feel that I am on a downhill trajectory. It is inevitable. Not to be avoided. More on those little philosophies later. Keep praying this prayer: TAKE THE PAIN AWAY!!!
Saturday, April 7, 2018
On the Road Again
Originally (and I know some of you have followed this litany from the first post in 2013) I began this journey taking the "off-road" track: starting with mistletoe, going to a clinic in Tijuana, rejecting chemo. Hence, my naming this blog the Road Less Traveled. Since then, I have taken many detours and most recently have subjected my body to several big pharma chemo drugs in my war on cancer.
On this most recent off-road track (the chemo track), my cancer has progressed.... sometimes slowly..... but definitely on the downward trend. After coming off of the most recent IV chemo drug (Taxol, the standard for breast cancer), a PET scan was administered. The results were not good: the liver lesions have increased in size and number. This helped my decision to get off of the Taxol -- not only to give my bowels (and my body in general) a break, but because it obviously was NOT keeping the cancer under control.
What to do? Well, ever since my return from the clinic in Tijuana in September of '13, I have wanted to re-try vitamin C IV therapy. Why? Because in December of '13 (I think I documented this more thoroughly in an early blog -- see archives), I saw a Bio-feedback practitioner who helped determine that the therapy that did the most benefit for me in Tijuana was (to my surprise, quite honestly) the IV vitamin C. Even though I attended the clinic in Tijuana for only 3 weeks, an amazing amount of progress was made on my very sore, swollen, and visibly inflamed breast; soreness was gone, swelling and inflammation were greatly reduced after only a week-and-a-half.
Why did I never try IV vitamin C after I learned this news of its success? Because evidently taking vitamin C can keep chemo from "doing its job." It is contra-indicated as a viable treatment when on chemo (per oncologist).
So now that I am off of the chemo, I am on IV vitamin C therapy. It was difficult finding any places that offer such treatment; I ended up going to NIHA (National Integrated Health Associates), a place I have always avoided.... had heard some good/some not so good about the place. I just grabbed the first place I could find b/c I wanted to get going on this ASAP. So after an arduous process of getting the whole thing in place, I am now on IV vitamin C therapy (alternating with hydrogen peroxide) three times a week. The schedule is grueling, the cost is astronomical (all out of pocket -- no more Medicare coverage).
I have 3 IV sessions per week, each one about 2-3 hours in length (almost twice as long as the IV chemo was). In order to save $$ on parking ($9 per visit!!!), I have been taking the Ride-On bus from Silver Spring to Friendship Heights (location of NIHA). Found out you can get an old-fart SmartTrip bus pass; bus trip costs only $1 during rush hour and it's FREE non-rush! (cool, huh? getting old CAN be awesome!)
Started all of this vitamin C-stuff on March 14. Plan is to go 12-16 weeks, then schedule another PET scan and monitor progress. We shall see what we shall see. Meanwhile -- pray, hope, and live each day to the max. Liver lesions or no, I am enjoying spring and music-making.
On this most recent off-road track (the chemo track), my cancer has progressed.... sometimes slowly..... but definitely on the downward trend. After coming off of the most recent IV chemo drug (Taxol, the standard for breast cancer), a PET scan was administered. The results were not good: the liver lesions have increased in size and number. This helped my decision to get off of the Taxol -- not only to give my bowels (and my body in general) a break, but because it obviously was NOT keeping the cancer under control.
What to do? Well, ever since my return from the clinic in Tijuana in September of '13, I have wanted to re-try vitamin C IV therapy. Why? Because in December of '13 (I think I documented this more thoroughly in an early blog -- see archives), I saw a Bio-feedback practitioner who helped determine that the therapy that did the most benefit for me in Tijuana was (to my surprise, quite honestly) the IV vitamin C. Even though I attended the clinic in Tijuana for only 3 weeks, an amazing amount of progress was made on my very sore, swollen, and visibly inflamed breast; soreness was gone, swelling and inflammation were greatly reduced after only a week-and-a-half.
Why did I never try IV vitamin C after I learned this news of its success? Because evidently taking vitamin C can keep chemo from "doing its job." It is contra-indicated as a viable treatment when on chemo (per oncologist).
So now that I am off of the chemo, I am on IV vitamin C therapy. It was difficult finding any places that offer such treatment; I ended up going to NIHA (National Integrated Health Associates), a place I have always avoided.... had heard some good/some not so good about the place. I just grabbed the first place I could find b/c I wanted to get going on this ASAP. So after an arduous process of getting the whole thing in place, I am now on IV vitamin C therapy (alternating with hydrogen peroxide) three times a week. The schedule is grueling, the cost is astronomical (all out of pocket -- no more Medicare coverage).
I have 3 IV sessions per week, each one about 2-3 hours in length (almost twice as long as the IV chemo was). In order to save $$ on parking ($9 per visit!!!), I have been taking the Ride-On bus from Silver Spring to Friendship Heights (location of NIHA). Found out you can get an old-fart SmartTrip bus pass; bus trip costs only $1 during rush hour and it's FREE non-rush! (cool, huh? getting old CAN be awesome!)
Started all of this vitamin C-stuff on March 14. Plan is to go 12-16 weeks, then schedule another PET scan and monitor progress. We shall see what we shall see. Meanwhile -- pray, hope, and live each day to the max. Liver lesions or no, I am enjoying spring and music-making.
Wednesday, January 31, 2018
Plan C -- Opting to Take a Break from IV Chemo
In my previous posts, I outlined Plan A (Ketogenic Diet) and Plan B (dropping the oral study drug, thinking that it was causing my bowel problems).
I have now been on the Ketogenic Diet and off of the study drug for 3 months. I am amazed at the change in my overall health due to the diet: I have lost 17 pounds, sleep is amazing, acid reflux is GONE, and energy is high. The idea is to go into ketosis, a state where the healthy cells in my body can utilize ketones and fats for fuel; but cancer cells cannot survive, as they need glucose to replicate and remain active. I have no idea whether the diet is working for that; time will tell.
I went off of the oral study drug because I was experiencing very severe bowel issues (the Big D, if you get my drift). At first, I thought that all was well in that department; however, the bowel issues still exist. This means that it is probably the IV chemotherapy (Taxol) that is contributing to this problem. This being the case, I discussed with my oncologist the possibility of taking a break from chemo altogether for a period of perhaps 3-4 months to see if my bowel problems might clear up. She agreed to this plan (which I am calling Plan C). So after this round of chemo (the 23rd month of this!!!! that's almost two years!!), I will stop treatment for a while to give my body a rest from the onslaught of poison that comes with chemotherapy.
The "psychology" of all of this intrigues me. For several weeks, I have been asking my oncologist the question: "So..... exactly how long will I be on this IV chemo treatment?" Her reply was always something like: "Well, you have been pretty stable on this; there have been no new occurrences of the disease"..... or "Well, this seems to be working for you." Not once has she even come close to suggesting that I could try going off of the treatment "just to see how my body does." In the world of oncology, they just keep you on whatever you're on; forever, if that's what it takes. If she even suggested that I could opt to stop the treatment, she might be subjecting herself to medical liability issues should I take that suggestion and then run the risk of my cancer getting worse.
So the decision was mine. Period. She gave me no guidance; she made no judgment whatsoever. I guess I should be grateful for this. I am flying solo. Who knows where I will land? Stay tuned....
I have now been on the Ketogenic Diet and off of the study drug for 3 months. I am amazed at the change in my overall health due to the diet: I have lost 17 pounds, sleep is amazing, acid reflux is GONE, and energy is high. The idea is to go into ketosis, a state where the healthy cells in my body can utilize ketones and fats for fuel; but cancer cells cannot survive, as they need glucose to replicate and remain active. I have no idea whether the diet is working for that; time will tell.
I went off of the oral study drug because I was experiencing very severe bowel issues (the Big D, if you get my drift). At first, I thought that all was well in that department; however, the bowel issues still exist. This means that it is probably the IV chemotherapy (Taxol) that is contributing to this problem. This being the case, I discussed with my oncologist the possibility of taking a break from chemo altogether for a period of perhaps 3-4 months to see if my bowel problems might clear up. She agreed to this plan (which I am calling Plan C). So after this round of chemo (the 23rd month of this!!!! that's almost two years!!), I will stop treatment for a while to give my body a rest from the onslaught of poison that comes with chemotherapy.
The "psychology" of all of this intrigues me. For several weeks, I have been asking my oncologist the question: "So..... exactly how long will I be on this IV chemo treatment?" Her reply was always something like: "Well, you have been pretty stable on this; there have been no new occurrences of the disease"..... or "Well, this seems to be working for you." Not once has she even come close to suggesting that I could try going off of the treatment "just to see how my body does." In the world of oncology, they just keep you on whatever you're on; forever, if that's what it takes. If she even suggested that I could opt to stop the treatment, she might be subjecting herself to medical liability issues should I take that suggestion and then run the risk of my cancer getting worse.
So the decision was mine. Period. She gave me no guidance; she made no judgment whatsoever. I guess I should be grateful for this. I am flying solo. Who knows where I will land? Stay tuned....
Thursday, December 14, 2017
Sweet Slumber
For years I have experienced problems with sleep: trouble getting to sleep, trouble staying asleep, sometimes lying abed half the night staring at the ceiling trying to calm the racing mind.
I have tried many remedies. The latest formula was Valerian (herbal supplement) and Coffea Cruda (homeopathic tablets); these helped often, but not every time I experienced insomnia.
Then I started the ketogenic diet. I think I threw my body into shock when doing this because I spent several nights in a row staring at the ceiling with that awake "monkey mind."
What to do?
One of my favorite on-line (AND in person) mentors is a wonderful chiropractor, Dr. Eric Berg. I went to see him (in northern Virginia) several years ago for some acupressure work and found him to be an amazing practitioner. He now has a huge on-line following. He has learned the art of reaching millions of people via the internet. Just look for him on YouTube and you will find incredible video blogs of all kinds. He also does a weekly on-line live call-in show via Facebook.
Dr. Berg is an expert on the ketogenic diet, not only for weight loss but for cancer. He and his wife offer a lot of incredible recipes for the keto diet. When I was having sleep issues, I found this amazing YouTube video outlining Dr. Berg's formula for dealing with insomnia: https://www.youtube.com/watch?v=cqbQAWpOJVE
If you view this, you will see that he talks about several possible reasons why insomnia takes hold of you on the ketogenic diet. I was particularly struck by what he said about intermittent fasting, lack of potassium and lack of vitamin B1. (In other videos, he discusses these three problems as separate issues.) So I began dealing with all three of these.
1) Intermittent fasting. I try to restrict my eating to 4-6 hours in a 24-hour period. At first it was difficult; but after a few days, I became accustomed to it.
2) Potassium deficiency. I remedied this by taking a shot of wheat grass daily. It tastes nasty but according to Dr. B, it's a great way to boost potassium intake. He has developed a powder that is not the complete wheat grass in dried form but the wheat grass JUICE in dried form; it's much more concentrated and more effective.
3) Vitamin B1 deficiency. This is alleviated by taking a spoonful of nutritional yeast a couple of times a day. Found this at My Organic Market. It's not very expensive and is easy to take; can consume it "straight" (has a lovely nutty taste) or sprinkle it on food.
4) Adrenal supplements. Dr. Berg has developed a couple of adrenal support supplements that I take to help "awaken" the adrenal response in the morning and "relax" the adrenals at bed-time. Just look up this topic on Dr. Berg's YouTube site if you need more info. It's all there.
After beginning the above protocol, I began experiencing AMAZING sleep. No kidding; I didn't know it was possible to sleep through the night! I consider this new-found information nothing short of miraculous. Dr. Eric Berg is terrific. Check him out: https://www.drberg.com/blog
I have tried many remedies. The latest formula was Valerian (herbal supplement) and Coffea Cruda (homeopathic tablets); these helped often, but not every time I experienced insomnia.
Then I started the ketogenic diet. I think I threw my body into shock when doing this because I spent several nights in a row staring at the ceiling with that awake "monkey mind."
What to do?
One of my favorite on-line (AND in person) mentors is a wonderful chiropractor, Dr. Eric Berg. I went to see him (in northern Virginia) several years ago for some acupressure work and found him to be an amazing practitioner. He now has a huge on-line following. He has learned the art of reaching millions of people via the internet. Just look for him on YouTube and you will find incredible video blogs of all kinds. He also does a weekly on-line live call-in show via Facebook.
Dr. Berg is an expert on the ketogenic diet, not only for weight loss but for cancer. He and his wife offer a lot of incredible recipes for the keto diet. When I was having sleep issues, I found this amazing YouTube video outlining Dr. Berg's formula for dealing with insomnia: https://www.youtube.com/watch?v=cqbQAWpOJVE
If you view this, you will see that he talks about several possible reasons why insomnia takes hold of you on the ketogenic diet. I was particularly struck by what he said about intermittent fasting, lack of potassium and lack of vitamin B1. (In other videos, he discusses these three problems as separate issues.) So I began dealing with all three of these.
1) Intermittent fasting. I try to restrict my eating to 4-6 hours in a 24-hour period. At first it was difficult; but after a few days, I became accustomed to it.
2) Potassium deficiency. I remedied this by taking a shot of wheat grass daily. It tastes nasty but according to Dr. B, it's a great way to boost potassium intake. He has developed a powder that is not the complete wheat grass in dried form but the wheat grass JUICE in dried form; it's much more concentrated and more effective.
3) Vitamin B1 deficiency. This is alleviated by taking a spoonful of nutritional yeast a couple of times a day. Found this at My Organic Market. It's not very expensive and is easy to take; can consume it "straight" (has a lovely nutty taste) or sprinkle it on food.
4) Adrenal supplements. Dr. Berg has developed a couple of adrenal support supplements that I take to help "awaken" the adrenal response in the morning and "relax" the adrenals at bed-time. Just look up this topic on Dr. Berg's YouTube site if you need more info. It's all there.
After beginning the above protocol, I began experiencing AMAZING sleep. No kidding; I didn't know it was possible to sleep through the night! I consider this new-found information nothing short of miraculous. Dr. Eric Berg is terrific. Check him out: https://www.drberg.com/blog
Tuesday, November 28, 2017
Au Revoir, Reflux!!!
My, my, this ketogenic diet has exhibited some surprising and delightful side effects.
In past posts, I complained of having acid reflux and heart burn -- a very common problem to many. In fact, I was blaming my chronic cough on this condition (LPR, or laryngopharyngeal reflux); I went off coffee and wine and worked on eating a low acid diet. I will admit that the change in diet "seemed" to help the cough initially. But it (the cough) has, sadly, returned with a vengeance; so I have been questioning my blaming it on acid reflux. And my hunch was right.
Since starting the keto diet, I have experienced NO (that's zilch, zero, nada, zip) acid reflux; no more problems with heart burn when trying to sleep. No more getting up at midnight and taking a Pepcid tablet. No more trying to sleep propped up on pillows.
I have even gone back to having one cup of coffee -- just one -- in the morning. This has not seemed to affect my cough at all, one way or another, nor my reflux problems. I have learned that this one cup of coffee actually has a positive effect on the intermittent fasting component of the keto diet; this is something I will discuss in a future post.
I am dumbfounded by this.
We truly "are what we eat." And more importantly, what we DON'T eat.
So this keto diet that I have embarked upon for fighting off hungry cancer cells has shown itself to have very demonstrably good side effects in other ways. Is it starving those *&+!!^($#@!!#$^ cancer cells? Hope so. Time will tell.
In past posts, I complained of having acid reflux and heart burn -- a very common problem to many. In fact, I was blaming my chronic cough on this condition (LPR, or laryngopharyngeal reflux); I went off coffee and wine and worked on eating a low acid diet. I will admit that the change in diet "seemed" to help the cough initially. But it (the cough) has, sadly, returned with a vengeance; so I have been questioning my blaming it on acid reflux. And my hunch was right.
Since starting the keto diet, I have experienced NO (that's zilch, zero, nada, zip) acid reflux; no more problems with heart burn when trying to sleep. No more getting up at midnight and taking a Pepcid tablet. No more trying to sleep propped up on pillows.
I have even gone back to having one cup of coffee -- just one -- in the morning. This has not seemed to affect my cough at all, one way or another, nor my reflux problems. I have learned that this one cup of coffee actually has a positive effect on the intermittent fasting component of the keto diet; this is something I will discuss in a future post.
I am dumbfounded by this.
We truly "are what we eat." And more importantly, what we DON'T eat.
So this keto diet that I have embarked upon for fighting off hungry cancer cells has shown itself to have very demonstrably good side effects in other ways. Is it starving those *&+!!^($#@!!#$^ cancer cells? Hope so. Time will tell.
Thursday, November 9, 2017
Plan B -- Bye-Bye, Study Drug!
If you are following the chronology via the archives, you know that I have a plan.
Plan B in my cancer treatment is STOPPING the oral chemo study drug (Alisertib) that I have been taking for 20 months. I tried to just leave the study altogether, but the study coordinator asked if I could stay on as part of the study, while no longer taking the drug. I agreed to this. Because I was stopping their drug, they insisted that I undergo CT and Bone scans within 7 days. So I had a CT scan this morning. Bone will be in a few days.
Why have I gone off the study drug? The primary reason is that beginning last February, my bowels began mal-functioning. I had the "loosey-goosies" or the big D (you know what I'm talking about, right?) beginning at that time and continuing to the present. Both the study people and my oncologist felt that this was probably due to the study drug, which is orally administered, and not the IV chemo.
And, in essence, I got tired of being a lab-rat. I ran into horrific billing issues with the scans that were administered early on in the study; in fact, those issues are still not resolved. I won't even go into that mess; it's too agonizing.
So I did agree to stay on the study (but not the drug) because they said that it would help them determine if, indeed, the bowel issues were due to their drug instead of the IV chemo. Part of any study for a new drug is determining what side effects are to be expected. You know those, right? That list of horrendous things that can happen to you that they list in those pharma ads on TV?
I will remain on the IV chemo for a while to see if the bowel problems will right themselves. Problem is, this new keto diet is pretty rough on the intestinal tract; it requires eating a LOT of raw veggies and greens and this, of course, tends to exacerbate poop problems. I am hoping that, as my body becomes more accustomed to the new diet, these issues will go away.
So, those who have been following for a while know that this sudden flurry of postings is rare, yes? That's because I have decided to stop being a passive guinea pig and start being pro-active! So the news bulletins will come with more frequency. If you want to receive email alerts when I add a new post, you can do so at the actual blog website, at the VERY bottom; there is a place there to sign up for email alerts. The site is http://betsyrlt.blogspot.com
Plan B in my cancer treatment is STOPPING the oral chemo study drug (Alisertib) that I have been taking for 20 months. I tried to just leave the study altogether, but the study coordinator asked if I could stay on as part of the study, while no longer taking the drug. I agreed to this. Because I was stopping their drug, they insisted that I undergo CT and Bone scans within 7 days. So I had a CT scan this morning. Bone will be in a few days.
Why have I gone off the study drug? The primary reason is that beginning last February, my bowels began mal-functioning. I had the "loosey-goosies" or the big D (you know what I'm talking about, right?) beginning at that time and continuing to the present. Both the study people and my oncologist felt that this was probably due to the study drug, which is orally administered, and not the IV chemo.
And, in essence, I got tired of being a lab-rat. I ran into horrific billing issues with the scans that were administered early on in the study; in fact, those issues are still not resolved. I won't even go into that mess; it's too agonizing.
So I did agree to stay on the study (but not the drug) because they said that it would help them determine if, indeed, the bowel issues were due to their drug instead of the IV chemo. Part of any study for a new drug is determining what side effects are to be expected. You know those, right? That list of horrendous things that can happen to you that they list in those pharma ads on TV?
I will remain on the IV chemo for a while to see if the bowel problems will right themselves. Problem is, this new keto diet is pretty rough on the intestinal tract; it requires eating a LOT of raw veggies and greens and this, of course, tends to exacerbate poop problems. I am hoping that, as my body becomes more accustomed to the new diet, these issues will go away.
So, those who have been following for a while know that this sudden flurry of postings is rare, yes? That's because I have decided to stop being a passive guinea pig and start being pro-active! So the news bulletins will come with more frequency. If you want to receive email alerts when I add a new post, you can do so at the actual blog website, at the VERY bottom; there is a place there to sign up for email alerts. The site is http://betsyrlt.blogspot.com
Wednesday, November 8, 2017
Plan A -- Ketosis
Sometimes the smallest step in the right direction ends up being the biggest step of your life.
Plan A -- The Ketogenic Cancer Diet
I know I need a plan to get more than a "stable" diagnosis from my doctor. I know that the chemo has had an effect but that it is not enough; after 20 months of treatment, I feel like I have stagnated, that I am treading water, in a holding pattern, just letting that little weekly injection keep me alive.
It just doesn't make sense.
As I said in my previous post, I always knew that cancer thrives and grows on sugar/glucose. But I didn't actually know how to kill those cancer cells until I learned about the ketogenic cancer diet. I learned about it from a young man named Daniel. He has been on the diet for various health issues and recommended it to me. I started looking into it. YouTube is awash with videos about this diet. Doctors and patients and just regular folks are out there trying this and many are finding it successful.
Very simply, the idea is this: nearly all the healthy cells in our body have the metabolic flexibility to efficiently use fat, glucose and ketones to survive; but cancer cells LACK this metabolic flexibility and require large amounts of glucose. Cancer cells CANNOT survive on ketones.
The ketogenic diet creates ketones in the body, which replace glucose as fuel. When deprived of glucose, cancer cells DIE. Healthy cells, on the other hand, have the ability to utilize protein to make glucose and to use ketones as fuel. Our bodies are truly amazing if we are shown how to help them work efficiently.
If you want to learn more, I recommend that you go to YouTube and type in Ketogenic Diet for Cancer. You will find tons of info. And plenty of science to back up the theories.
I started the diet on Saturday, November 4. It's not easy but I'm determined to make a go of it.
Plan A -- The Ketogenic Cancer Diet
I know I need a plan to get more than a "stable" diagnosis from my doctor. I know that the chemo has had an effect but that it is not enough; after 20 months of treatment, I feel like I have stagnated, that I am treading water, in a holding pattern, just letting that little weekly injection keep me alive.
It just doesn't make sense.
As I said in my previous post, I always knew that cancer thrives and grows on sugar/glucose. But I didn't actually know how to kill those cancer cells until I learned about the ketogenic cancer diet. I learned about it from a young man named Daniel. He has been on the diet for various health issues and recommended it to me. I started looking into it. YouTube is awash with videos about this diet. Doctors and patients and just regular folks are out there trying this and many are finding it successful.
Very simply, the idea is this: nearly all the healthy cells in our body have the metabolic flexibility to efficiently use fat, glucose and ketones to survive; but cancer cells LACK this metabolic flexibility and require large amounts of glucose. Cancer cells CANNOT survive on ketones.
The ketogenic diet creates ketones in the body, which replace glucose as fuel. When deprived of glucose, cancer cells DIE. Healthy cells, on the other hand, have the ability to utilize protein to make glucose and to use ketones as fuel. Our bodies are truly amazing if we are shown how to help them work efficiently.
If you want to learn more, I recommend that you go to YouTube and type in Ketogenic Diet for Cancer. You will find tons of info. And plenty of science to back up the theories.
I started the diet on Saturday, November 4. It's not easy but I'm determined to make a go of it.
Tuesday, November 7, 2017
Back on the Road
When I began this blog, I was truly on the Road Less Traveled. I used alternative therapies (among them mistletoe -- hence, the photo); I sought help from an integrative M.D. who steered me in the direction of good nutrition and supplemental support; I traveled to Tijuana, Mexico to receive therapies that are forbidden (or unknown) in this country.
I achieved some success. Inflammation decreased, numbers improved. But a few months after returning from MX, things started going south. For all of the details, just head into the archives; there, you can ready the story.
In a nutshell, I left that "road less traveled" and entered the world of allopathic standard of care: CHEMO. I have been on IV chemo + an oral chemo study drug for 20 months. Again, just read the archives for details.
I have always known that cancer cells LOVE sugar. Prior to being on chemo, I ate what I thought was a very healthy diet: for a while no dairy / no gluten / no sugar. But I was still eating a lot of carbs. When I went on chemo, I kind of "gave up" on the good diet thing; I guess I figured if I was pouring all of that poison into my body, what the heck? I might as well eat whatever I wanted to with wild abandon.
But I knew, deep down, that it wasn't right. And after being "stable" -- nothing really changing for months and months, cancer is still in my bone (and probably my lymph, although hard to tell on the scans). I started to ask myself, So this is it? I'll be on this poison that is keeping me "stable" for the rest of my life? I knew it was wrong -- deep down in my gut (where there is a lot of bad stuff going on, believe me!)
In my previous post, I shared this pearl of wisdom: "Hope is really belief coupled with a plan."
My plan is to get back on that road less traveled. I do have a plan -- a couple of them, in fact. Stay tuned for details.
I achieved some success. Inflammation decreased, numbers improved. But a few months after returning from MX, things started going south. For all of the details, just head into the archives; there, you can ready the story.
In a nutshell, I left that "road less traveled" and entered the world of allopathic standard of care: CHEMO. I have been on IV chemo + an oral chemo study drug for 20 months. Again, just read the archives for details.
I have always known that cancer cells LOVE sugar. Prior to being on chemo, I ate what I thought was a very healthy diet: for a while no dairy / no gluten / no sugar. But I was still eating a lot of carbs. When I went on chemo, I kind of "gave up" on the good diet thing; I guess I figured if I was pouring all of that poison into my body, what the heck? I might as well eat whatever I wanted to with wild abandon.
But I knew, deep down, that it wasn't right. And after being "stable" -- nothing really changing for months and months, cancer is still in my bone (and probably my lymph, although hard to tell on the scans). I started to ask myself, So this is it? I'll be on this poison that is keeping me "stable" for the rest of my life? I knew it was wrong -- deep down in my gut (where there is a lot of bad stuff going on, believe me!)
In my previous post, I shared this pearl of wisdom: "Hope is really belief coupled with a plan."
My plan is to get back on that road less traveled. I do have a plan -- a couple of them, in fact. Stay tuned for details.
Thursday, November 2, 2017
Hope in a Storm
The head nurse in the Infusion Room (I call it the "wig room") at my oncologist's office is a fireball of energy. His name is Aaron and he runs a tight ship. He is also a ray of sunshine and a breath of fresh air. He wears Dr. Seuss lab shirts ("One Fish Two Fish" is my fave). He has a quotation board on which he writes words of wisdom and encouragement for the patients to read while they are receiving their poison. I thought I should share one of his latest offerings -- it's one of the best so far:
"And once the storm is over, you won't remember how you made it through, how you managed to survive. You won't even be sure whether the storm is really over. But one thing is certain. When you come out of the storm, you won't be the same person who walked in. That's what this storm's all about." -- Haruki Murakami
Pretty heavy stuff, ay?
In my last two posts, I have reported that there is very little to report. The areas of cancer that still exist are considered "stable." That's the word they use. Stable. They never say, "You're getting better" or "I think we're making progress." The doc just says that everything looks stable and that stable is "good."
Ok. That's cool. I get it. The chemo has had an effect, but if I want to stay alive, I have to be on this for the rest of my life? No one actually says that; but it's certainly implied. Chemo is NOT a cure; it's a TREATMENT.
I would like a better prognosis. I am seeking other options. I'm pretty sure that if I want a respite from this chemo / study drug treatment (I am into the 20th month of this now!), I am going to have to take charge. I am going to have to formulate a plan; no one else will do this for me.
I now quote Dr. Robertson Ward, a practicing doctor in Illinois who has written a book about molecular cell biology (more on that in another blog, perhaps). In an introductory video on his website, he says this: "Some of you have been told, 'well, you're just gonna have to live with it.' And your level of hope has perhaps been shattered or diminished greatly. Hope is really belief coupled with a plan." I am seeking that plan. More to come as I seek and learn.
"And once the storm is over, you won't remember how you made it through, how you managed to survive. You won't even be sure whether the storm is really over. But one thing is certain. When you come out of the storm, you won't be the same person who walked in. That's what this storm's all about." -- Haruki Murakami
Pretty heavy stuff, ay?
In my last two posts, I have reported that there is very little to report. The areas of cancer that still exist are considered "stable." That's the word they use. Stable. They never say, "You're getting better" or "I think we're making progress." The doc just says that everything looks stable and that stable is "good."
Ok. That's cool. I get it. The chemo has had an effect, but if I want to stay alive, I have to be on this for the rest of my life? No one actually says that; but it's certainly implied. Chemo is NOT a cure; it's a TREATMENT.
I would like a better prognosis. I am seeking other options. I'm pretty sure that if I want a respite from this chemo / study drug treatment (I am into the 20th month of this now!), I am going to have to take charge. I am going to have to formulate a plan; no one else will do this for me.
I now quote Dr. Robertson Ward, a practicing doctor in Illinois who has written a book about molecular cell biology (more on that in another blog, perhaps). In an introductory video on his website, he says this: "Some of you have been told, 'well, you're just gonna have to live with it.' And your level of hope has perhaps been shattered or diminished greatly. Hope is really belief coupled with a plan." I am seeking that plan. More to come as I seek and learn.
Saturday, July 29, 2017
Blog Neglect
Alas, I am guilty of "blog neglect." I have not posted any news since February. Mea culpa. Forty lashes with wet noodle are due me.
To those of who you have checked.... and checked.... and checked.... and found nothing, I do apologize. I have started to receive emails, phone calls, cards in the mail. And today my old friend Susan Carr (visiting the old 'hood from Minnesota) actually pulled up to my house in her car wondering if I was ok!
Well, I am ok. There is actually very little to report since the last update. I am still on IV chemo 3 weeks on / one week off + oral chemo study drug. Still having CT scans and bone scans. I am now into the 17th month of this!
Yes, it is getting old. And so am I. This is good; means I am still walking the planet and breathing air.
Scans are still showing lingering signs of the disease, with some areas diminishing in size. Scans are just photos. Wish they could sit up and talk and say, "Look, chica! It's working!" Or..... "Forget it, chica! You're all washed up; why do you even keep trying?" But alas... all we can do is stare at the photos and make stabs in the dark. The oncologist says it's all good, because there are no NEW areas of cancer. Ok, I'll go with "good."
There was a rib that showed signs of the disease months ago; now that area is clear. But there are still "shadows" on the scapula and skull.
And so I keep on keepin' on. Side effects still occur: fatigue, loopiness, bad bowel activity (joy).
I will try to report more frequently, even if it's just to say, "same old, same old."
Sorry to have worried some of you. Thanks for asking; and for checking.
xoxox
To those of who you have checked.... and checked.... and checked.... and found nothing, I do apologize. I have started to receive emails, phone calls, cards in the mail. And today my old friend Susan Carr (visiting the old 'hood from Minnesota) actually pulled up to my house in her car wondering if I was ok!
Well, I am ok. There is actually very little to report since the last update. I am still on IV chemo 3 weeks on / one week off + oral chemo study drug. Still having CT scans and bone scans. I am now into the 17th month of this!
Yes, it is getting old. And so am I. This is good; means I am still walking the planet and breathing air.
Scans are still showing lingering signs of the disease, with some areas diminishing in size. Scans are just photos. Wish they could sit up and talk and say, "Look, chica! It's working!" Or..... "Forget it, chica! You're all washed up; why do you even keep trying?" But alas... all we can do is stare at the photos and make stabs in the dark. The oncologist says it's all good, because there are no NEW areas of cancer. Ok, I'll go with "good."
There was a rib that showed signs of the disease months ago; now that area is clear. But there are still "shadows" on the scapula and skull.
And so I keep on keepin' on. Side effects still occur: fatigue, loopiness, bad bowel activity (joy).
I will try to report more frequently, even if it's just to say, "same old, same old."
Sorry to have worried some of you. Thanks for asking; and for checking.
xoxox
Tuesday, February 21, 2017
Progress
I know it's been a while since posting, but there has been very little to report.
But progress IS being made, albeit at a snail's pace, or so it feels to me. Had another bone scan last Friday. Results are good: all "shadows" on skull, scapula, and rib (three areas of bone metastasis) are reduced in size. This is very positive news.
So although the cancer is still there, we are making slow and steady progress. Will it ever be gone? No one can assure me of that at this point. But if we are moving in a positive direction, then we must see this as a sign for celebration.
Onward, then, with the treatment. On the 29th of February, I begin Cycle 11 (that's 11 months!) of infusion chemo. I am still tolerating it pretty well; still taking a lot of extra supplementation to boost immune system. Mistletoe has always been at the top of that list; I inject it every other day. Neuropathy is under control with L-Glutamine, twice daily. Many other remedies are in the bag of tricks.
I am told by so many that I am being prayed for and for this, I am eternally grateful.
But progress IS being made, albeit at a snail's pace, or so it feels to me. Had another bone scan last Friday. Results are good: all "shadows" on skull, scapula, and rib (three areas of bone metastasis) are reduced in size. This is very positive news.
So although the cancer is still there, we are making slow and steady progress. Will it ever be gone? No one can assure me of that at this point. But if we are moving in a positive direction, then we must see this as a sign for celebration.
Onward, then, with the treatment. On the 29th of February, I begin Cycle 11 (that's 11 months!) of infusion chemo. I am still tolerating it pretty well; still taking a lot of extra supplementation to boost immune system. Mistletoe has always been at the top of that list; I inject it every other day. Neuropathy is under control with L-Glutamine, twice daily. Many other remedies are in the bag of tricks.
I am told by so many that I am being prayed for and for this, I am eternally grateful.
Saturday, December 10, 2016
Dem Bones
In the past three weeks, I have had two scans, a full-body CT scan and a full-body bone scan. The previous CT scan showed some improvement to "shadowy" tumor areas. However, previous bone scans have not shown any progress -- until now.
Get this, folks: the latest bone scan showed NO NEW areas of metastases; in addition, the report showed a diminishing (!!) of most of the previous bone shadows.
This....is.... great.... news. It means that we are on the right track in treatment protocols.
So.... although the tumor areas have not been completely eliminated, progress has been made. I will be continuing with chemo infusions. For how long? Can't say at this point.
I am tolerating the protocol pretty well. I do get tired and occasionally feel loopy, but am able to continue playing church gigs, singing, and teaching. I have begun experiencing some neuropathy in the left hand. It is possible my naturopath will recommend increasing my intake of L-Glutamine, which is the supplement that helps counteract the effects of hand and foot neuropathy.
Many have wondered how I have been able to tolerate 8+ months of chemo without experiencing extreme side effects. I credit my naturopath M.D., who has helped me manage a heavy course of supplementation to counteract the side effects of chemo. I actually take a supplement to "up" my white- and red-blood cell counts; and another to help lower blood pressure. I take six mega-multi-vitamins daily, vitamin D-3, black currant oil, melatonin, colloidal silver, calcium...... and on and on the list goes. I am even taking THC oil (cannabis oil). And, of course, I still give myself mistletoe injections every other day to bolster my immune system.
Living a relatively normal life -- in my case, this means making music and being with all my musician friends -- has been key for my survival. And, of course, prayers and plenty of good vibes from everyone have made an impact; of that I am certain. Thank you, all, for your support and love.
Onward.
Get this, folks: the latest bone scan showed NO NEW areas of metastases; in addition, the report showed a diminishing (!!) of most of the previous bone shadows.
This....is.... great.... news. It means that we are on the right track in treatment protocols.
So.... although the tumor areas have not been completely eliminated, progress has been made. I will be continuing with chemo infusions. For how long? Can't say at this point.
I am tolerating the protocol pretty well. I do get tired and occasionally feel loopy, but am able to continue playing church gigs, singing, and teaching. I have begun experiencing some neuropathy in the left hand. It is possible my naturopath will recommend increasing my intake of L-Glutamine, which is the supplement that helps counteract the effects of hand and foot neuropathy.
Many have wondered how I have been able to tolerate 8+ months of chemo without experiencing extreme side effects. I credit my naturopath M.D., who has helped me manage a heavy course of supplementation to counteract the side effects of chemo. I actually take a supplement to "up" my white- and red-blood cell counts; and another to help lower blood pressure. I take six mega-multi-vitamins daily, vitamin D-3, black currant oil, melatonin, colloidal silver, calcium...... and on and on the list goes. I am even taking THC oil (cannabis oil). And, of course, I still give myself mistletoe injections every other day to bolster my immune system.
Living a relatively normal life -- in my case, this means making music and being with all my musician friends -- has been key for my survival. And, of course, prayers and plenty of good vibes from everyone have made an impact; of that I am certain. Thank you, all, for your support and love.
Onward.
Monday, November 7, 2016
November Update
I'm sorry that my absence from posting has caused concern to some of my blog followers. There has really been very little news to report. I am about to begin Cycle 7 of chemo infusion treatments. So far, have had 18 IV infusions in addition to the oral study drug.
Thankfully, side effects are not bad enough to keep me from teaching piano, playing gigs, and singing. Some tummy upset and general fatigue come and go, but I do my best to slog through those times. Having NO hair -- anywhere!! -- is just plain weird. I was forewarned about the head-hair loss and have adapted with wigs and hats. But it's kind of freaky having no eye lashes, no eyebrows, and no NOSE HAIRS! I find it rather amusing to pinch my nostrils together and they just stay stuck in that configuration for several seconds. Gotta find humor where we can, ay?
My cough is almost totally under control, thanks to understanding the effects of acid reflux. The voice is not totally recovered, but I am happy to report that I am back to doing some singing.
Next scan is scheduled for November 15. Let's hope it shows positive results.
Looking forward to accompanying my grandson Jacob and his family to see a Penn State hockey game this Friday -- in honor of his 10th birthday!
xoxox to all....
Thankfully, side effects are not bad enough to keep me from teaching piano, playing gigs, and singing. Some tummy upset and general fatigue come and go, but I do my best to slog through those times. Having NO hair -- anywhere!! -- is just plain weird. I was forewarned about the head-hair loss and have adapted with wigs and hats. But it's kind of freaky having no eye lashes, no eyebrows, and no NOSE HAIRS! I find it rather amusing to pinch my nostrils together and they just stay stuck in that configuration for several seconds. Gotta find humor where we can, ay?
My cough is almost totally under control, thanks to understanding the effects of acid reflux. The voice is not totally recovered, but I am happy to report that I am back to doing some singing.
Next scan is scheduled for November 15. Let's hope it shows positive results.
Looking forward to accompanying my grandson Jacob and his family to see a Penn State hockey game this Friday -- in honor of his 10th birthday!
xoxox to all....
Monday, September 12, 2016
Scan Results
Went in for blood work this a.m. in preparation for another week of chemo. I was anticipating seeing my oncologist in two days to discuss results of last week's scan. But my study coordinator stated that the doc wanted to see me prior to my next chemo treatment, just in case we needed to change the protocol based on scan results. So in the late a.m., I was squeezed into my oncologist's schedule.
The report showed improvement (i.e., reduction in size of tumors) in several areas: breast tissue (original tumor site), lymph, and liver. All of those areas show little, if any, tumor presence. No new growth. There were still anomalies in some areas of the bone.... in scapula (no change from before) and in the lower spine (no change). A new "shadow" appeared on a rib fairly close to the original tumor area. I had felt some soreness there earlier in the summer, which had dissipated. But there now appears to be "activity" there. I had felt that I had bruised that area when doing some gardening a couple of months ago. The doc said that inflammation due to injury often looks the same as cancer activity on a scan; so it is possible that this area might not be cancer at all, but the result of inflammation due to bruising. Let's hope that is the case!
All in all, the news I got today was good. We are sticking with the present chemo protocol, especially since I am tolerating it pretty well. Cancer blood markers were drawn today; I will have results of those on Wednesday when I begin Treatment I of Cycle 6 of chemo.
Onward.
The report showed improvement (i.e., reduction in size of tumors) in several areas: breast tissue (original tumor site), lymph, and liver. All of those areas show little, if any, tumor presence. No new growth. There were still anomalies in some areas of the bone.... in scapula (no change from before) and in the lower spine (no change). A new "shadow" appeared on a rib fairly close to the original tumor area. I had felt some soreness there earlier in the summer, which had dissipated. But there now appears to be "activity" there. I had felt that I had bruised that area when doing some gardening a couple of months ago. The doc said that inflammation due to injury often looks the same as cancer activity on a scan; so it is possible that this area might not be cancer at all, but the result of inflammation due to bruising. Let's hope that is the case!
All in all, the news I got today was good. We are sticking with the present chemo protocol, especially since I am tolerating it pretty well. Cancer blood markers were drawn today; I will have results of those on Wednesday when I begin Treatment I of Cycle 6 of chemo.
Onward.
Tuesday, September 6, 2016
Scanning the Horizon
This will be a quickie post, just to check in.
I am chugging along with treatment and, so far, it's fairly tolerable. Last week marked end of Cycle #4. I have now had 12 infusions of chemo along with oral study drug. I will have results at my next oncology appointment... September 14.
This coming Thursday (September 8), I will have another full-body scan. My last scan (in July) did not really show any improvement, except for some change in right lymph nodes. I am not thrilled with having so many scans, but alas, I am now on this bus and I am not the driver.
So let's try to enjoy the ride!
I am chugging along with treatment and, so far, it's fairly tolerable. Last week marked end of Cycle #4. I have now had 12 infusions of chemo along with oral study drug. I will have results at my next oncology appointment... September 14.
This coming Thursday (September 8), I will have another full-body scan. My last scan (in July) did not really show any improvement, except for some change in right lymph nodes. I am not thrilled with having so many scans, but alas, I am now on this bus and I am not the driver.
So let's try to enjoy the ride!
Friday, August 12, 2016
"What you eat....
....could EAT YOU!"
This is another take on that famous bumper-sticker phrase: "You are what you eat."
Those of you who have been following this blog know that, in addition to the cancer that is trying to get me down, I have been suffering from a chronic cough that has been exacerbated by speaking. The voice has also been adversely affected, preventing me from doing solo vocal work. It's been a real bummer.
But after learning of LPR (laryngopharyngeal reflux) from my friend Carol, who has suffered vocal problems from this condition, I began to more carefully monitor what I was eating and drinking. The results have been dramatic. I have totally cut out coffee, wine, beer and most (but not all) teas from my diet. I have also learned which foods are alkaline and which are acidic; the goal is to "drop acid" (fun pun!). I am also drinking a ton of water and sipping apple cider vinegar mixed with honey and warm water throughout the day. Eating large meals is a no-no, especially close to bedtime.
The result of my dietary changes is that the cough, although not totally gone, is significantly less frequent. I am able to speak for long periods and do some brief snippets of singing with little or no coughing. I hope that, in time, my cough-ravaged voice will heal. After over a year of suffering with this, the relief I am feeling is monumental!
So.... hey out there.... if you know anyone who has a chronic cough, consider an acidic diet and acid reflux as a source of the problem. I cannot believe I suffered with this for so long and no medical professional seemed to have the answer. I have discovered that there are, indeed, doctors who know about this, but you have to know who those smart ones are.... alas.
Sidebar comment about chemo treatments: I am in the middle of a treatment-free week. I seem to be tolerating everything pretty well, thank goodness. Next Wednesday begins 10th chemo treatment.
This is another take on that famous bumper-sticker phrase: "You are what you eat."
Those of you who have been following this blog know that, in addition to the cancer that is trying to get me down, I have been suffering from a chronic cough that has been exacerbated by speaking. The voice has also been adversely affected, preventing me from doing solo vocal work. It's been a real bummer.
But after learning of LPR (laryngopharyngeal reflux) from my friend Carol, who has suffered vocal problems from this condition, I began to more carefully monitor what I was eating and drinking. The results have been dramatic. I have totally cut out coffee, wine, beer and most (but not all) teas from my diet. I have also learned which foods are alkaline and which are acidic; the goal is to "drop acid" (fun pun!). I am also drinking a ton of water and sipping apple cider vinegar mixed with honey and warm water throughout the day. Eating large meals is a no-no, especially close to bedtime.
The result of my dietary changes is that the cough, although not totally gone, is significantly less frequent. I am able to speak for long periods and do some brief snippets of singing with little or no coughing. I hope that, in time, my cough-ravaged voice will heal. After over a year of suffering with this, the relief I am feeling is monumental!
So.... hey out there.... if you know anyone who has a chronic cough, consider an acidic diet and acid reflux as a source of the problem. I cannot believe I suffered with this for so long and no medical professional seemed to have the answer. I have discovered that there are, indeed, doctors who know about this, but you have to know who those smart ones are.... alas.
Sidebar comment about chemo treatments: I am in the middle of a treatment-free week. I seem to be tolerating everything pretty well, thank goodness. Next Wednesday begins 10th chemo treatment.
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