It's Thursday, March 22. I've been tugging, pulling, and carrying supplemental oxygen tanks around EVERYWHERE for the past 7 months. It even has to accompany me to job interviews, and I know I've lost one possible opportunity because writing that company's manuals requires me to visit various job sites and record what happens. I just can't wheel or lug oxygen easily over rough terrain for a half mile or more, and we both realize it. Darn it!
However, I realize today that I feel stronger and can breathe a little easier. I think it's time for an experiment, so I remove the nasal cannula and go about my daily business.
I keep checking my O2 saturation levels every 30 minutes or so with a portable oximeter, and each time the numbers are over 90. Hallelujah! It might FINALLY be time to say adios to that meddlesome cannula.
Since my numbers continue to stay strong throughout the day, I'm hopeful that I'm through with the supplemental oxygen crud.
I keep using the oxygen at night because it's often harder to breathe while sleeping than while active, but everything still looks good; and I'm feeling stronger. Hooray!
Finally, after starting supplemental oxygen around the end of August 2011, the medical supply company comes and picks it all up--only about 8 months later! I'm just so thrilled to be rid of it.
The chemo I had as part of the bone marrow transplant is known to cause lung toxicities in some people. Because my lungs are already damaged and weak, I figured that those lung toxicities would, for sure!, affect my lungs and probably keep me on oxygen the rest of my life.
It's not so. Good-bye supplemental oxygen. I won't miss you. Hello, another tender mercy from the Lord!
Purple Everywhere
Daily Herald picture
Thursday, April 19, 2012
beginning of February 2012
So I feel disheartened, probably almost to the point of being clinically depressed. It seems like there are too many effects from fighting cancer and being alive. Why am I still here after 3 rounds of cancer when some people get cancer once and they're gone just a short time later? I'm trapped in a small pity party and am grasping for the light again.
It's Fast Sunday. As I'm pondering what hymns to play as prelude, I'm moved to play through several Sacrament Hymns. Why not? What could be more appropriate as a base for our testimonies than to remember the sacrifice of our Savior and His Atonement!
As I play, I'm silently singing the words to myself, and thinking about the Atonement in general.
It was our Stake's focus for all of 2011, so there's been lots of information on the subject presented in various meetings for the past twelve months. That's what I'm contemplating as I'm playing the prelude.
I know the Atonement can heal us spiritually. I know what a relief and joy it is to feel clean again after repenting and feeling the Savior's forgiveness. All of the former despair is washed away and the world seems brighter, the colors seem clearer. What a blessing!
I also know that the Atonement can heal us emotionally. Mental and emotional ugly black slashes, either deliberately or accidentally burned through our psyches, can be smoothed over; and we can feel and find worth and joy and love. I've found peace in that part of the Atonement as well.
So why does life seem so hard right now? The Atonement can cure any and every part of our life.
Suddenly, the burden of the past few weeks is lifted, and there is life again. I guess I'm a little slower than most people because it's taken a year of discussion for all aspects of the Atonement to sink in.
Silly Trish! You've forgotten about the most apparent and obvious part of the Atonement--the promise of being resurrected. Sure, my body is ravaged by the effects of various cancer treatments. Sure, it's harder to breathe and move and work than it is for most people. But, and this is the part you lost sight of momentarily, IT WON'T BE LIKE THIS FOREVER!
I will be resurrected. Because of the Atonement, I will have a perfect body with a working heart and lungs and be able to run and do everything I want to without physical restrictions. I'll get to bear and raise children. Even that blessing is not denied because of our Savior's wonderful sacrifice.
The sense of hope that I've been missing for the last few weeks is back. I just needed to remember our Savior and ALL that He's done for us. I know I need to share this joy and the Spirit is really prompting me to get up in Sacrament Meeting, but I'm too emotional. This re-discovery is too new and raw, and I don't trust myself to be able to convey all of this in a way that will make sense to anyone else. No, I tell myself, it's better to listen to others' discoveries and truths now.
I spend all of Sunday School marveling at how good life is, how simple and yet profound the gospel is, and how much hope I feel now compared to how I felt at the beginning of the day.
Then, as Relief Society is almost at an end, I'm on my feet, stammering "Darn it. I'm supposed to get up now" as I feel like the Spirit is pushing me to a standing position.
It's okay. I can share these thoughts now, hopefully, in a way that will inspire someone else and make their burdens lighter.
How Great Thou Art!
It's Fast Sunday. As I'm pondering what hymns to play as prelude, I'm moved to play through several Sacrament Hymns. Why not? What could be more appropriate as a base for our testimonies than to remember the sacrifice of our Savior and His Atonement!
As I play, I'm silently singing the words to myself, and thinking about the Atonement in general.
It was our Stake's focus for all of 2011, so there's been lots of information on the subject presented in various meetings for the past twelve months. That's what I'm contemplating as I'm playing the prelude.
I know the Atonement can heal us spiritually. I know what a relief and joy it is to feel clean again after repenting and feeling the Savior's forgiveness. All of the former despair is washed away and the world seems brighter, the colors seem clearer. What a blessing!
I also know that the Atonement can heal us emotionally. Mental and emotional ugly black slashes, either deliberately or accidentally burned through our psyches, can be smoothed over; and we can feel and find worth and joy and love. I've found peace in that part of the Atonement as well.
So why does life seem so hard right now? The Atonement can cure any and every part of our life.
Suddenly, the burden of the past few weeks is lifted, and there is life again. I guess I'm a little slower than most people because it's taken a year of discussion for all aspects of the Atonement to sink in.
Silly Trish! You've forgotten about the most apparent and obvious part of the Atonement--the promise of being resurrected. Sure, my body is ravaged by the effects of various cancer treatments. Sure, it's harder to breathe and move and work than it is for most people. But, and this is the part you lost sight of momentarily, IT WON'T BE LIKE THIS FOREVER!
I will be resurrected. Because of the Atonement, I will have a perfect body with a working heart and lungs and be able to run and do everything I want to without physical restrictions. I'll get to bear and raise children. Even that blessing is not denied because of our Savior's wonderful sacrifice.
The sense of hope that I've been missing for the last few weeks is back. I just needed to remember our Savior and ALL that He's done for us. I know I need to share this joy and the Spirit is really prompting me to get up in Sacrament Meeting, but I'm too emotional. This re-discovery is too new and raw, and I don't trust myself to be able to convey all of this in a way that will make sense to anyone else. No, I tell myself, it's better to listen to others' discoveries and truths now.
I spend all of Sunday School marveling at how good life is, how simple and yet profound the gospel is, and how much hope I feel now compared to how I felt at the beginning of the day.
Then, as Relief Society is almost at an end, I'm on my feet, stammering "Darn it. I'm supposed to get up now" as I feel like the Spirit is pushing me to a standing position.
It's okay. I can share these thoughts now, hopefully, in a way that will inspire someone else and make their burdens lighter.
How Great Thou Art!
end of January 2012
Okay, so all of this nitrogen mustard stuff has been ruminating in the back of my mind for a few weeks now.
Do you want to see the list of things that were caused by chemotherapy and radiation from when I was 7 and 8, specifically the nitrogen mustard?
Here goes. . .in no particular order:
* Shingles (Extensive case, leaving massive scars and no skin sensation across my left shoulder and neck. Because the virus was activated, I currently have to take Acyclovir day and night so I don't contract another case while my body is recovering from the transplant.)
* Tachycardia (Resting heart rate is about 100 beats per minute, which means my heart races constantly and is working harder than it should.)
* Stunted growth (Parents were on the taller side, one brother was over 6 feet, my sisters are in the 5'6"-5'8" range, and I'm stuck at 5'0".)
* Weak teeth (I could pull out all of my teeth on my bottom left jaw today. They move significantly from side to side and have roots that are smaller than baby teeth. I was told at age 7 that I'd lose all of my teeth by the time I was 25. I'm trying to hold on to them as long as possible.)
* No sweat glands or hair follicles under either arm (This, I actually count as a blessing. No wearing deodorant or shaving there for me!)
* Hypothyroidism (Thyroid was damaged and doesn't produce enough hormone, so I'm on a replacement thyroid hormone.)
* Mitral Valve Regurgitation (Heart was damaged, so it's having to work harder to overcome the leaking valve.)
* Gastro-Esophageal Reflux (The esophageal lining was weakened and is too thin, so I take medication day and night to prevent more erosion.)
* Sterility (MOPP leaves you sterile, so I was told from the time I was 7 that I couldn't have children. Then, all of my female organs failed when I was 34, so I had to have a complete abdominal hysterectomy, which cinched the fact.)
* Pulmonary Hypertension (My lungs are permanently scarred and have the capacity of an 81 year-old woman. No wonder I have such trouble breathing!)
* Aortic Valve Stenosis (This heart valve leaks a lot and is being closely monitored. I'll probably have to have open heart surgery to have it replaced in the next 2-3 years.)
* Severe Osteoporosis (This is why, when I tripped on the sidewalk a year ago, my forearm and wrist shattered into over 20 pieces. Now, I'm on a daily injected medication for two years to try and strengthen my bones as much as possible. Chemo robs bones of their calcium.)
* Severe Myopia (Near sightedness. Recently added to my list as a direct effect.)
Not to mention all of the scars covering my body. Shingles scars, scars on my neck and upper chest from ports and other blood catheters, two long scars on my abdomen from a laparotomy and splenectomy (no spleen) at 7 and hysterectomy more recently, ugly scars on my left forearm and hand from having a external fixator inserted from when it was broken, and a pair of dog-bite-looking scars on the top of each foot from two lymphangiograms when I was 7 (for diagnosis and treatment progress purposes). I tongue-in-cheek joke with Dale that he'll never have a problem identifying my body with all of its scars!
I know. I know. I know it could be much worse. I'm alive and can relatively do the things I want to do--as long as I carry that wretched oxygen with me. However, this list and my general weakness and fatigue and the fact that I'm still on oxygen after 5 months have just been weighing heavily on me. It feels like too much. I feel like giving up sometimes. What's the point if I have all of this to deal with? And who knows how much worse the effects from the latest rounds of chemo and radiation are going to be? I'm just sad and disheartened.
Do you want to see the list of things that were caused by chemotherapy and radiation from when I was 7 and 8, specifically the nitrogen mustard?
Here goes. . .in no particular order:
* Shingles (Extensive case, leaving massive scars and no skin sensation across my left shoulder and neck. Because the virus was activated, I currently have to take Acyclovir day and night so I don't contract another case while my body is recovering from the transplant.)
* Tachycardia (Resting heart rate is about 100 beats per minute, which means my heart races constantly and is working harder than it should.)
* Stunted growth (Parents were on the taller side, one brother was over 6 feet, my sisters are in the 5'6"-5'8" range, and I'm stuck at 5'0".)
* Weak teeth (I could pull out all of my teeth on my bottom left jaw today. They move significantly from side to side and have roots that are smaller than baby teeth. I was told at age 7 that I'd lose all of my teeth by the time I was 25. I'm trying to hold on to them as long as possible.)
* No sweat glands or hair follicles under either arm (This, I actually count as a blessing. No wearing deodorant or shaving there for me!)
* Hypothyroidism (Thyroid was damaged and doesn't produce enough hormone, so I'm on a replacement thyroid hormone.)
* Mitral Valve Regurgitation (Heart was damaged, so it's having to work harder to overcome the leaking valve.)
* Gastro-Esophageal Reflux (The esophageal lining was weakened and is too thin, so I take medication day and night to prevent more erosion.)
* Sterility (MOPP leaves you sterile, so I was told from the time I was 7 that I couldn't have children. Then, all of my female organs failed when I was 34, so I had to have a complete abdominal hysterectomy, which cinched the fact.)
* Pulmonary Hypertension (My lungs are permanently scarred and have the capacity of an 81 year-old woman. No wonder I have such trouble breathing!)
* Aortic Valve Stenosis (This heart valve leaks a lot and is being closely monitored. I'll probably have to have open heart surgery to have it replaced in the next 2-3 years.)
* Severe Osteoporosis (This is why, when I tripped on the sidewalk a year ago, my forearm and wrist shattered into over 20 pieces. Now, I'm on a daily injected medication for two years to try and strengthen my bones as much as possible. Chemo robs bones of their calcium.)
* Severe Myopia (Near sightedness. Recently added to my list as a direct effect.)
Not to mention all of the scars covering my body. Shingles scars, scars on my neck and upper chest from ports and other blood catheters, two long scars on my abdomen from a laparotomy and splenectomy (no spleen) at 7 and hysterectomy more recently, ugly scars on my left forearm and hand from having a external fixator inserted from when it was broken, and a pair of dog-bite-looking scars on the top of each foot from two lymphangiograms when I was 7 (for diagnosis and treatment progress purposes). I tongue-in-cheek joke with Dale that he'll never have a problem identifying my body with all of its scars!
I know. I know. I know it could be much worse. I'm alive and can relatively do the things I want to do--as long as I carry that wretched oxygen with me. However, this list and my general weakness and fatigue and the fact that I'm still on oxygen after 5 months have just been weighing heavily on me. It feels like too much. I feel like giving up sometimes. What's the point if I have all of this to deal with? And who knows how much worse the effects from the latest rounds of chemo and radiation are going to be? I'm just sad and disheartened.
January 2012--a few weeks later
A few weeks after my eye appointment, I received an issue of the Cure magazine. It's designed for cancer survivors and their caregivers. Almost immediately, the message from the editor caught my eye, entitled "New research, discoveries in Hodgkin lymphoma."
Allow me to ramble for a moment. Things have sure changed in my 36 years of dealing with cancer! When I was 7, it was called Hodgkin's Lymphoma. It seemed to be called Hodgkins lymphoma about 4 years ago, and now it's called Hodgkin lymphoma. If I sneak that 's' onto Hodgkins, you'll know why.
Anyway, back to the article. I was astounded to read that Hodgkins was one of the first cancers to be treated successfully, and it's the principles learned from treating Hodgkins that all modern cancer treatments are based on.
Hodgkin's initial cures can be traced back to WWI. That's when troops were first exposed to nitrogen mustard gas and began developing symptoms of marrow and lymphatic suppression. So researchers wondered what effect nitrogen mustard would have on lymphatic cancers--such as Hodgkins. And it worked pretty well! By the mid-1960s, MOPP (mustargen [nitrogen mustard], Oncovin [vincristine], procarbazine, and prednisone) increased the success rate in treating Hodgkins from about 20% to 80%!
Along I come, in 1973, and MOPP and radiation are still the standard treatment for Hodgkins, so that's what I'm exposed to.
Suddenly, facts are becoming even clearer for me.
No wonder my body is so screwed up! No wonder I'm dealing with such an extensive list of ongoing, chronic issues. My body was pumped full of nitrogen mustard--that terrible nerve gas that was used in WWI.
That realization is just adding to my slight depression in trying to recover from the bone marrow transplant. I'm so tired. I wish I could just go to sleep and sleep long enough for it all to go away. It seems like too much to recover from.
In fact, if I'm being honest, sometimes it seems a lot harder to fight to keep living than it would be to give up. And, I've prayed more than once, if it be Heavenly Father's will, that I be released from this life and be allowed to come home again. Alas, and thankfully--at the same time--it's not His will yet.
Allow me to ramble for a moment. Things have sure changed in my 36 years of dealing with cancer! When I was 7, it was called Hodgkin's Lymphoma. It seemed to be called Hodgkins lymphoma about 4 years ago, and now it's called Hodgkin lymphoma. If I sneak that 's' onto Hodgkins, you'll know why.
Anyway, back to the article. I was astounded to read that Hodgkins was one of the first cancers to be treated successfully, and it's the principles learned from treating Hodgkins that all modern cancer treatments are based on.
Hodgkin's initial cures can be traced back to WWI. That's when troops were first exposed to nitrogen mustard gas and began developing symptoms of marrow and lymphatic suppression. So researchers wondered what effect nitrogen mustard would have on lymphatic cancers--such as Hodgkins. And it worked pretty well! By the mid-1960s, MOPP (mustargen [nitrogen mustard], Oncovin [vincristine], procarbazine, and prednisone) increased the success rate in treating Hodgkins from about 20% to 80%!
Along I come, in 1973, and MOPP and radiation are still the standard treatment for Hodgkins, so that's what I'm exposed to.
Suddenly, facts are becoming even clearer for me.
No wonder my body is so screwed up! No wonder I'm dealing with such an extensive list of ongoing, chronic issues. My body was pumped full of nitrogen mustard--that terrible nerve gas that was used in WWI.
That realization is just adding to my slight depression in trying to recover from the bone marrow transplant. I'm so tired. I wish I could just go to sleep and sleep long enough for it all to go away. It seems like too much to recover from.
In fact, if I'm being honest, sometimes it seems a lot harder to fight to keep living than it would be to give up. And, I've prayed more than once, if it be Heavenly Father's will, that I be released from this life and be allowed to come home again. Alas, and thankfully--at the same time--it's not His will yet.
January 5, 2012
Okay, so I've got a few things that I need to write about; but it's been so long since some of events actually occurred. I've been feeling so neglectful of this blog that my solution has been to ignore it. Of course, that's not helping the problem, so I'm finally repenting.
While preparing a recent Relief Society lesson, I realized that Joseph Smith recorded the account of the First Vision in the Pearl of Great Price about 19 years AFTER it occurred. If he can record something so important, so vital that long after it happened, I ought to be able to record far less trivial things a few months after they happened and not beat myself up about the time disparity.
With that in mind. . .
In the first part of January (the 5th to be exact), I had an eye exam. No real news there. I've had terrible eye sight and been horribly near sighted since the third grade. When the ophthalmologist's assistant asked why my vision was so bad, I really didn't know. My only theory was that I read voraciously when I wasn't allowed to go outside (too many germs for an immune system compromised by chemo and radiation). I'd usually read with the book propped on my chest, so I theorized that my eyes simply got lazy and got used to that distance, leaving me extremely near sighted.
When the ophthalmologist came in, I asked him if there was any truth supporting my musings. He quickly shut my attempt at logic down and said that our eyes don't work that way. So I asked him why he thought my eyes were so bad. He shrugged at first, then slowly responded, "Didn't you say you had chemo when you were 7? That's what did it. I'm sure of it."
I'd never connected those dots before, and I didn't realize how pervasive the long-term effects of chemo are. Chemo ended when I was 8 years old. Less than a year later, I couldn't see the chalkboard at school and was diagnosed with myopia. My eyesight has just progressively gotten worse since then. Thankfully, it's still correctable even though I need quite a strong prescription.
That exam got me thinking and feeling even slightly depressed as I realized how much chemo continues to affect me today--not to mention what the other three rounds of chemo I've had in the past four years will present in the coming years!
This was back in January, when I was still easily fatigued and on supplemental oxygen 24/7. Just having to carry around the extra 10 pound canisters of oxygen left me weak and exhausted. Now we're adding other things on to the list of chemo-caused issues. Drat!
While preparing a recent Relief Society lesson, I realized that Joseph Smith recorded the account of the First Vision in the Pearl of Great Price about 19 years AFTER it occurred. If he can record something so important, so vital that long after it happened, I ought to be able to record far less trivial things a few months after they happened and not beat myself up about the time disparity.
With that in mind. . .
In the first part of January (the 5th to be exact), I had an eye exam. No real news there. I've had terrible eye sight and been horribly near sighted since the third grade. When the ophthalmologist's assistant asked why my vision was so bad, I really didn't know. My only theory was that I read voraciously when I wasn't allowed to go outside (too many germs for an immune system compromised by chemo and radiation). I'd usually read with the book propped on my chest, so I theorized that my eyes simply got lazy and got used to that distance, leaving me extremely near sighted.
When the ophthalmologist came in, I asked him if there was any truth supporting my musings. He quickly shut my attempt at logic down and said that our eyes don't work that way. So I asked him why he thought my eyes were so bad. He shrugged at first, then slowly responded, "Didn't you say you had chemo when you were 7? That's what did it. I'm sure of it."
I'd never connected those dots before, and I didn't realize how pervasive the long-term effects of chemo are. Chemo ended when I was 8 years old. Less than a year later, I couldn't see the chalkboard at school and was diagnosed with myopia. My eyesight has just progressively gotten worse since then. Thankfully, it's still correctable even though I need quite a strong prescription.
That exam got me thinking and feeling even slightly depressed as I realized how much chemo continues to affect me today--not to mention what the other three rounds of chemo I've had in the past four years will present in the coming years!
This was back in January, when I was still easily fatigued and on supplemental oxygen 24/7. Just having to carry around the extra 10 pound canisters of oxygen left me weak and exhausted. Now we're adding other things on to the list of chemo-caused issues. Drat!
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