The Next Symptom
This post is in three parts. In the first part, I have some updates about my condition. In the second, I believe I received assurance that I'm doing the right thing, and should not alter course. In the third, I'll talk about my new favorite treatment.
The cocktail of medications I am on is still keeping me going. I'm in no pain, have the energy I need to do the things that are important to me, I'm able to sleep, and my nausea is under control. I know it's a Band-Aid. This won't last forever. I tell people we're holding it all together with duct tape and Elmer's Glue. It's working for now, but the first time it rains, it'll all melt. But I'm grateful for the time these medications are giving me. If not for them, I wouldn't be doing much.
I received no compensation for the two instances of product placement in the above paragraph.
I received no compensation for the two instances of product placement in the above paragraph.
My greatest risk, in terms of a catastrophic event that would compromise my quality of life is a spinal compression. Cancer has weakened the bones of my spine. That's where most of my cancer is. Many guys with my condition suffer from spinal compressions that paralyze them from that point down. This happened to a friend of mine. He spent the rest of his life in a facility where he could be cared for properly.
This is my greatest fear. Not dying from this cancer, but being paralyzed by it. Having to live the rest of my life in a hospice facility, instead of at home. So I asked my nurse this week if lifting heavy objects would increase my risk of a spinal compression. She said yes. She said I shouldn't lift any more than twenty pounds. Twenty pounds! I bought a case of bottled water this week that weighed more than that. That's emasculating. No more lifting speakers for me. No more jumping, either. Not that I've done much jumping lately.
But that wasn't the worst news she gave me. Recently, my wife has begun complaining about my breath. Once recently she asked if I'd forgotten to brush my teeth when I had just done so. When I saw my nurse this week, I asked her about it. I thought maybe it was the combination of meds I'm on. Or maybe my body chemistry is changing.
She asked if my diet had changed, or my oral hygiene. I said no. If it isn't bacteria in my mouth, which is the usual cause of bad breath, the most likely conclusion is that my cancer is making "fumes," as she put it, and they're coming out of my mouth when I exhale. I'm breathing out cancer fumes. I literally have death breath. This is my latest symptom.
I looked it up on the Google machine, and there are new studies that show a breath test can detect certain types of cancer. So cancer breath is a real thing, apparently.
It's almost funny. That thing I was so insecure about in middle school, bad breath, is now actually a problem. Of course, in middle school, I was self-conscious about my breath on the off chance I'd get close enough to a girl for her to smell my breath. Which rarely happened at that age. But now, in my sixties, I coach teenage singers and often have to talk to them in close quarters with a loud band playing. Now I'm self-conscious about exhaling my death breath on teenage girls! It's the ultimate Junior High nightmare! This should do wonders for my shrinking circle.
I'm trying to keep it under control with flossing, mouthwash, and breath mints. I know about parsley and other natural remedies. But if this is a medical condition, it will need to be addressed medically. Many people suffer from chronic halitosis because of a health issue. I know there are medicines for that, and my nurse is looking into them for me. I'll keep you updated on this and everything else, as always.
As longtime readers know, I refused chemotherapy. Chemo would not have cured me, or even given me significant time. I felt good about deciding against it in favor of pursuing my callings and passions for as long as I can. But there is what seems to be an impossible goal date ahead of me that I would very much like to accomplish; The Littleton Conservatory Of Rock summer show this year. Rehearsals would begin in June, and the show would be in August.
The winter show is in three weeks. I'm looking forward to it with great anticipation. I told the kids at our first rehearsal that this would have to be my last show, because of my declining health. I don't see any way I'll be able to do the summer show if we do nothing to treat my cancer. I honestly don't see myself making it to my 63rd birthday on May 7th under the present circumstances.
This being the case, I've been considering doing a round of chemo this February, right after the winter show, in order to try to be around for the summer show. It goes against what I believe in, but I was seriously considering it. I just wanted a few more months to follow through on some things.
There are private reasons I can't share here that would prevent me from doing this. A major change would have to take place for me to try to get more time. But had that change occurred, I was on the verge of going off hospice care in three weeks and going back into treatment.
And then, I found out that the one person on earth that I would trust to give me chemo no longer works where I would go to get it. There's no one else I'd let do that to me. Longtime readers know who I'm talking about.
As heartbroken as I am about this for my friend, I have to say that for me, it was a sign. God was saying, "Really? Let me take away your one trusted person, and see if you still wanna reverse the course I've set for you." I got the message. No chemo. Full speed ahead.
Also, because of this, I've made the decision to stop going back to my oncology team for my monthly consultations. I'll still go back and visit, but I will no longer be a patient there. I'm in my fourth month of hospice care. It's time I started seeing my actual hospice doctor.
If God wants me around for the summer show, he'll have to make it happen himself.
In my first week of hospice care, my social worker recommended a treatment called Reiki. She said it's used effectively for many dying people. She didn't really explain what it is, and now I know why. It's difficult to explain. It's sort of like a New Agey massage, only it's not a massage at all. It's just light touching on top of clothes, done in a specific way.
As both a Christian and a science guy, I've always been skeptical, if not hostile, towards anything New Age or based on Eastern philosophy. But at this point in my life, I'm more open than I used to be. After the intense experience with God I had more than two years ago, the hard edges around my Christian faith have softened. I now believe all things serve The One, whether they are intended to do so or not. All good things come from him. And I have found that Reiki is a very good thing, at least for me.
I decided to try it. With my heightened spiritual sensitivity, I would know immediately if this felt wrong. I am secure in my relationship with God. I've lived my life by following my heart, and I knew my heart would speak truth to me about this, one way or the other.
A volunteer named Terri arrived at my door for our first appointment last November. I liked her immediately, and both our dog and cat took to her like she had raised them. Good vibes.
As we had our introductory conversation, I found out Terri is also a Christian and a science person. She's an engineer with security clearance. She told me that many patients who were insensible and even hostile, not knowing she was there or what she was doing, would calm down when she treated them. Its supposed to be great for pain, which does not apply to me yet, thank God. It's also supposed to be good for stress. I do have a lot of stress. Dying is hard work. The stress of cancer has aged me.
In our first session, Terri had me lie down on my bed, and get some mood music playing. While I started the music, she proceeded to "get the room ready." This consists of a series of hand motions. I know, it seems a little hocus pocus to me too. The session takes about an hour. She touches me lightly for a few minutes in each area of my body, starting at the head, and going down to my feet.
The first time we did this, I felt nothing. It was nice lying down for an hour listening to soft music, and I liked Terri, but I didn't feel like Reiki had done anything for me. Terri asked if I wanted to try it again. I said sure, I'd be willing to give it another try. Maybe it was an off day for me. We set an appointment for about a month later, in mid-December.
When Terri came in December, she asked me to lay across the foot of the bed, so she could get behind my head. The first time, I lay with my head on the pillow at the head of the bed, like usual. So my head was against the headboard, and she couldn't reach properly. This time, Terri started facing the top of my head.
She placed her hands on top of my head for a few minutes, then the side. Or maybe it was the other way around. Her hands got very warm. I could feel this warm, energizing sensation. I don't really believe in chakras and New Age energies, but I felt something. I prefer to think of it as a physiological response. But whatever it was, it was powerful. Impossible to describe, but powerful.
Then she moved her hands under my head, and the sensation was overpowering. Tears began streaming down the sides of my face. Terri became emotional as well. It's now expected that, when that part comes, and her hands are under my head, we may both be crying. We keep tissues close at hand. Terri continued down to my neck and chest, and down my legs to my feet. She always asks if there are any areas of discomfort so she can spend more time on those areas.
Each time we do this, my dog, my cat, or both, are on the bed with me. They can't get enough of it. They huddle up against me to get some of that feeling, energy, or whatever it is. Once, when we were finished, Terri had excess Reiki to give, and dog, cat, and woman shared the last of it in one huddled group hug. It was a sight to behold.
After that second session, I felt energized for the rest of the day. I was sold. I couldn't wait for our next session. In an hour-long Reiki session, there's lots of time to talk. I told her about my work with The Littleton Conservatory Of Rock. Our rehearsals are four to five hours long for me, every Saturday. So Terri volunteered to come on Saturday mornings before I have to be at rehearsal, to help give me energy for the day. Emphasis on the word volunteer. Terri does all of this on a volunteer basis for dying patients. She, like all hospice volunteers, is an angel.
When Terri was here last Saturday before rehearsal, I told her I was having increased nausea and a muscle strain or knot in my back, which was very painful. She spent extra time on those areas, and when we were finished, the pain in my back was gone and I was hungry.
Terri has become a friend. She is actually moving into our neighborhood soon, walking distance from our house. This makes me very happy, and makes our pets even happier.
I suspect that many of my readers will struggle with this, the way many did regarding my medical marijuana use. All I can tell you is that I sense no spiritual aversion to Reiki at all. It's true that I don't buy into what those who practice Reiki believe about it, but all good things come from one place. I don't believe in taking lots of prescription drugs either, but here I am doing what I must. For me, the bottom line is, Reiki helps me live better. It helps me get through taxing days so I can do the things I love to do.
I wouldn't recommend Reiki to anyone who would be uncomfortable with it for any reason. But if you're open to this, I believe it would be beneficial to you.
She asked if my diet had changed, or my oral hygiene. I said no. If it isn't bacteria in my mouth, which is the usual cause of bad breath, the most likely conclusion is that my cancer is making "fumes," as she put it, and they're coming out of my mouth when I exhale. I'm breathing out cancer fumes. I literally have death breath. This is my latest symptom.
I looked it up on the Google machine, and there are new studies that show a breath test can detect certain types of cancer. So cancer breath is a real thing, apparently.
It's almost funny. That thing I was so insecure about in middle school, bad breath, is now actually a problem. Of course, in middle school, I was self-conscious about my breath on the off chance I'd get close enough to a girl for her to smell my breath. Which rarely happened at that age. But now, in my sixties, I coach teenage singers and often have to talk to them in close quarters with a loud band playing. Now I'm self-conscious about exhaling my death breath on teenage girls! It's the ultimate Junior High nightmare! This should do wonders for my shrinking circle.
I'm trying to keep it under control with flossing, mouthwash, and breath mints. I know about parsley and other natural remedies. But if this is a medical condition, it will need to be addressed medically. Many people suffer from chronic halitosis because of a health issue. I know there are medicines for that, and my nurse is looking into them for me. I'll keep you updated on this and everything else, as always.
A Sign From God
As longtime readers know, I refused chemotherapy. Chemo would not have cured me, or even given me significant time. I felt good about deciding against it in favor of pursuing my callings and passions for as long as I can. But there is what seems to be an impossible goal date ahead of me that I would very much like to accomplish; The Littleton Conservatory Of Rock summer show this year. Rehearsals would begin in June, and the show would be in August.
The winter show is in three weeks. I'm looking forward to it with great anticipation. I told the kids at our first rehearsal that this would have to be my last show, because of my declining health. I don't see any way I'll be able to do the summer show if we do nothing to treat my cancer. I honestly don't see myself making it to my 63rd birthday on May 7th under the present circumstances.
This being the case, I've been considering doing a round of chemo this February, right after the winter show, in order to try to be around for the summer show. It goes against what I believe in, but I was seriously considering it. I just wanted a few more months to follow through on some things.
There are private reasons I can't share here that would prevent me from doing this. A major change would have to take place for me to try to get more time. But had that change occurred, I was on the verge of going off hospice care in three weeks and going back into treatment.
And then, I found out that the one person on earth that I would trust to give me chemo no longer works where I would go to get it. There's no one else I'd let do that to me. Longtime readers know who I'm talking about.
As heartbroken as I am about this for my friend, I have to say that for me, it was a sign. God was saying, "Really? Let me take away your one trusted person, and see if you still wanna reverse the course I've set for you." I got the message. No chemo. Full speed ahead.
Also, because of this, I've made the decision to stop going back to my oncology team for my monthly consultations. I'll still go back and visit, but I will no longer be a patient there. I'm in my fourth month of hospice care. It's time I started seeing my actual hospice doctor.
If God wants me around for the summer show, he'll have to make it happen himself.
Reiki, Don't Lose That Number
In my first week of hospice care, my social worker recommended a treatment called Reiki. She said it's used effectively for many dying people. She didn't really explain what it is, and now I know why. It's difficult to explain. It's sort of like a New Agey massage, only it's not a massage at all. It's just light touching on top of clothes, done in a specific way.
As both a Christian and a science guy, I've always been skeptical, if not hostile, towards anything New Age or based on Eastern philosophy. But at this point in my life, I'm more open than I used to be. After the intense experience with God I had more than two years ago, the hard edges around my Christian faith have softened. I now believe all things serve The One, whether they are intended to do so or not. All good things come from him. And I have found that Reiki is a very good thing, at least for me.
I decided to try it. With my heightened spiritual sensitivity, I would know immediately if this felt wrong. I am secure in my relationship with God. I've lived my life by following my heart, and I knew my heart would speak truth to me about this, one way or the other.
A volunteer named Terri arrived at my door for our first appointment last November. I liked her immediately, and both our dog and cat took to her like she had raised them. Good vibes.
As we had our introductory conversation, I found out Terri is also a Christian and a science person. She's an engineer with security clearance. She told me that many patients who were insensible and even hostile, not knowing she was there or what she was doing, would calm down when she treated them. Its supposed to be great for pain, which does not apply to me yet, thank God. It's also supposed to be good for stress. I do have a lot of stress. Dying is hard work. The stress of cancer has aged me.
In our first session, Terri had me lie down on my bed, and get some mood music playing. While I started the music, she proceeded to "get the room ready." This consists of a series of hand motions. I know, it seems a little hocus pocus to me too. The session takes about an hour. She touches me lightly for a few minutes in each area of my body, starting at the head, and going down to my feet.
The first time we did this, I felt nothing. It was nice lying down for an hour listening to soft music, and I liked Terri, but I didn't feel like Reiki had done anything for me. Terri asked if I wanted to try it again. I said sure, I'd be willing to give it another try. Maybe it was an off day for me. We set an appointment for about a month later, in mid-December.
When Terri came in December, she asked me to lay across the foot of the bed, so she could get behind my head. The first time, I lay with my head on the pillow at the head of the bed, like usual. So my head was against the headboard, and she couldn't reach properly. This time, Terri started facing the top of my head.
She placed her hands on top of my head for a few minutes, then the side. Or maybe it was the other way around. Her hands got very warm. I could feel this warm, energizing sensation. I don't really believe in chakras and New Age energies, but I felt something. I prefer to think of it as a physiological response. But whatever it was, it was powerful. Impossible to describe, but powerful.
Then she moved her hands under my head, and the sensation was overpowering. Tears began streaming down the sides of my face. Terri became emotional as well. It's now expected that, when that part comes, and her hands are under my head, we may both be crying. We keep tissues close at hand. Terri continued down to my neck and chest, and down my legs to my feet. She always asks if there are any areas of discomfort so she can spend more time on those areas.
Each time we do this, my dog, my cat, or both, are on the bed with me. They can't get enough of it. They huddle up against me to get some of that feeling, energy, or whatever it is. Once, when we were finished, Terri had excess Reiki to give, and dog, cat, and woman shared the last of it in one huddled group hug. It was a sight to behold.
After that second session, I felt energized for the rest of the day. I was sold. I couldn't wait for our next session. In an hour-long Reiki session, there's lots of time to talk. I told her about my work with The Littleton Conservatory Of Rock. Our rehearsals are four to five hours long for me, every Saturday. So Terri volunteered to come on Saturday mornings before I have to be at rehearsal, to help give me energy for the day. Emphasis on the word volunteer. Terri does all of this on a volunteer basis for dying patients. She, like all hospice volunteers, is an angel.
When Terri was here last Saturday before rehearsal, I told her I was having increased nausea and a muscle strain or knot in my back, which was very painful. She spent extra time on those areas, and when we were finished, the pain in my back was gone and I was hungry.
Terri has become a friend. She is actually moving into our neighborhood soon, walking distance from our house. This makes me very happy, and makes our pets even happier.
I suspect that many of my readers will struggle with this, the way many did regarding my medical marijuana use. All I can tell you is that I sense no spiritual aversion to Reiki at all. It's true that I don't buy into what those who practice Reiki believe about it, but all good things come from one place. I don't believe in taking lots of prescription drugs either, but here I am doing what I must. For me, the bottom line is, Reiki helps me live better. It helps me get through taxing days so I can do the things I love to do.
I wouldn't recommend Reiki to anyone who would be uncomfortable with it for any reason. But if you're open to this, I believe it would be beneficial to you.
And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. (Romans 8:38)
Neither cancer breath nor the loss of my nurse, nor a treatment that may seem "out there" to some can separate me from the One who showed himself to me and changed me more than two years ago. My heart is for him, and like all things seen and unseen, I serve him. #waroncancer #bearingwitness
Neither cancer breath nor the loss of my nurse, nor a treatment that may seem "out there" to some can separate me from the One who showed himself to me and changed me more than two years ago. My heart is for him, and like all things seen and unseen, I serve him. #waroncancer #bearingwitness
Wow, this is an awesome post. Very gripping and so from the heart. You are a remarkable person, and I am so inspired by your approach to all of this "ugly" you are going through.
ReplyDeleteMay I share your experience with reiki on my wall? I’m a certified medical reiki practitioner and a volunteer at Denver Hospice. Your story is so Inspiring!!!
ReplyDeleteYes, by all means, share!
Delete