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....
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