Hey Friends - I am feeling better! My Lumbar Sympathetic Nerve Block that I wrote about a month ago was a bust. I had a numb thigh for one day and that was it. I do not recommend that procedure to anyone!
What has been successful is my physical therapy. Rather then being an all out assault on my tender foot nerves, this has been a slow and gradual process. Light touch through a sock, light touch without a sock, and a little more distress as tolerated. I have had wonderful success with this and can now tolerate walking barefoot for short periods of time and sleeping barefoot (praise Jesus!).
Cymbalta is working well to keep my nerve pain in check and the anti-depressant aspects of the medicine have been a Balm in Gilead. I feel so much lighter, happier, and able to move forward despite my chronic conditions. I may need to add in Lyrica as my body gets used to these meds but for the time being things are stable.
What has happened is that my brain has been able to take the confused nerve input from my left foot and register it simply as someone or something touching that foot rather then as pain. My left foot feels as weird as ever, and it always will. It will never feel good to have someone touch that foot. But, my brain now registers these sensations simply as left foot "new normal" as opposed to left foot "pain alert". This is a tremendous blessing and an answer to prayer.
So, we are in a holding pattern. My ankle is showing signs of the tumor's return which is no surprise, but it will be several months before that is confirmed with an MRI. Thank you all for your thoughts and prayers as I have navigated these difficult months. I am finally feeling good and hopeful and I will just cross that next bridge when it comes. I am happy to enjoy my foot for these next few months as I am able.
Take care friends!
deck
Monday, February 10, 2020
Saturday, January 18, 2020
Shot in the Back
It's been a while and I need to update you all on how I'm doing. Last Friday I had my sympathetic nerve block in the lumbar region. Not fun!
First, this procedure happens at a special outpatient surgery center. Which is great if you are in a hurry but less great if you are afraid. Lots of people moving in and out of various waiting areas and operating rooms. It is early January so my day starts out by paying my full deductible up front. "I hope you take a credit card."
I am hustled into the back room where I do prep which includes nothing. I put a hospital gown on over my clothes and booties on over my shoes. Good look. The pain doctor comes to see me and draws with a marker on the side of my back we are doing. Then I wait.
"Someone is in there now so it will be 10 minutes."
I am alone and I am scared. I focus on my breath and relaxing and prayer. I ask myself what I am so afraid of. I am afraid that it will hurt and be scary. Ok, I tell myself. I can do it. Just relax.
The wheelchair brings a man back to the area next to mine, gets wiped down, and picks me up. We roll back into the operating room which is just as cold and foreboding as every other room I've been operated on in.
Everyone has big aprons and I ask why. Its because they will do x-rays and with x-rays all day they need to protect themselves.
They ask me to lay face down on the skinniest table ever and put my head into a little massage pillow. I make jokes about how much I paid for this and ask if they will be giving me a massage as well. Trying to be funny and trying to calm myself down.
I lay into this little pillow and look at nothing. Unlike the massage table there is no hole to see out of. I am so scared at this point. So very scared.
They pull up the back of my shirt and the nurse says "I'm going to pull down your pants". Great. She pulls them down half way and folds them over. It is freezing in this room and half my butt is on display. "just relax" yeah right!
Doctor comes in and tries to be friendly. First the numbing agent. "pinch and a burn" Oh GOD! I'm crying out in pain. Needle into the side of my lower back and it burns like Satan's fire. Son of a Biscuit!
OK, now pressure. The doctor begins pressing the needle closer and closer to my spine, deeper and deeper in my back. I don't know until later but he is coming in at a deep angle so he can hit the interior portion of my spine.
At this point I am in extreme pain and completely terrified. Everything I counseled myself about earlier is happening. This is literally my worst nightmare. I am face down into the pillow and trying to relax. I know my tense muscles will make it hurt more. I listen to my heart beat being projected loudly into the room and try to calm down.
Pain pain pain as the needle moves deeper and deeper. I can feel the table moving up and down as he asks for x-rays and tries to get into just the right place. I can't help but cry out "Oh God!" and "I don't like this" I can feel the pressure in the front of my body on the table, like he's hitting my ovaries or something.
Finally he starts to say, "we're getting close". The contrast dye goes in and finally, after about 10 minutes which feels like an eternity, the medicine goes into my back. And finally finally, the needle comes out.
I am so sad, and in so much pain. I look back over my shoulder and ask to see the needle. "Are you sure?" Its 12 inches long and they show me that it went in more than half way.
They ask me to climb off the table and I just want to die. I make a joke about a massage again and then say "just kidding, don't touch my back." I ask lots of questions as I get into the wheelchair. They do upwards of 25 of these a day from the sacrum to the neck. No thanks.
I'm wheeled back to the waiting area, stripped of my gown, told to take it easy and am sent home.
My Dad drove me so I look for him in the waiting area. We slowly make our way to the car and as we walk I ask if I can hold his hand. I am so scared, shaken up, and in pain. In the car I cry for awhile. Not fun.
On the whole, I would not recommend this procedure to my worst enemy. I could do it if you put me asleep. Wide awake it was literally torture. Plus, it didn't work at all! I had a numb thigh for a day and that was it. Thanks but no thanks.
It has taken a week for me to recover. Ice packs and sore back. But I have survived and am so thankful it is past now.
Other than this terrible episode on the whole I am doing well. Physical therapy has been a pleasant surprise, I will write on that next time. And we are four weeks into my anti-depressants. Which means I'm starting to feel like things will be OK. Even if I am in constant pain.
Blessings friends. And watch out for those shots in the back. Not recommended!
First, this procedure happens at a special outpatient surgery center. Which is great if you are in a hurry but less great if you are afraid. Lots of people moving in and out of various waiting areas and operating rooms. It is early January so my day starts out by paying my full deductible up front. "I hope you take a credit card."
I am hustled into the back room where I do prep which includes nothing. I put a hospital gown on over my clothes and booties on over my shoes. Good look. The pain doctor comes to see me and draws with a marker on the side of my back we are doing. Then I wait.
"Someone is in there now so it will be 10 minutes."
I am alone and I am scared. I focus on my breath and relaxing and prayer. I ask myself what I am so afraid of. I am afraid that it will hurt and be scary. Ok, I tell myself. I can do it. Just relax.
The wheelchair brings a man back to the area next to mine, gets wiped down, and picks me up. We roll back into the operating room which is just as cold and foreboding as every other room I've been operated on in.
Everyone has big aprons and I ask why. Its because they will do x-rays and with x-rays all day they need to protect themselves.
They ask me to lay face down on the skinniest table ever and put my head into a little massage pillow. I make jokes about how much I paid for this and ask if they will be giving me a massage as well. Trying to be funny and trying to calm myself down.
I lay into this little pillow and look at nothing. Unlike the massage table there is no hole to see out of. I am so scared at this point. So very scared.
They pull up the back of my shirt and the nurse says "I'm going to pull down your pants". Great. She pulls them down half way and folds them over. It is freezing in this room and half my butt is on display. "just relax" yeah right!
Doctor comes in and tries to be friendly. First the numbing agent. "pinch and a burn" Oh GOD! I'm crying out in pain. Needle into the side of my lower back and it burns like Satan's fire. Son of a Biscuit!
OK, now pressure. The doctor begins pressing the needle closer and closer to my spine, deeper and deeper in my back. I don't know until later but he is coming in at a deep angle so he can hit the interior portion of my spine.
At this point I am in extreme pain and completely terrified. Everything I counseled myself about earlier is happening. This is literally my worst nightmare. I am face down into the pillow and trying to relax. I know my tense muscles will make it hurt more. I listen to my heart beat being projected loudly into the room and try to calm down.
Pain pain pain as the needle moves deeper and deeper. I can feel the table moving up and down as he asks for x-rays and tries to get into just the right place. I can't help but cry out "Oh God!" and "I don't like this" I can feel the pressure in the front of my body on the table, like he's hitting my ovaries or something.
Finally he starts to say, "we're getting close". The contrast dye goes in and finally, after about 10 minutes which feels like an eternity, the medicine goes into my back. And finally finally, the needle comes out.
I am so sad, and in so much pain. I look back over my shoulder and ask to see the needle. "Are you sure?" Its 12 inches long and they show me that it went in more than half way.
They ask me to climb off the table and I just want to die. I make a joke about a massage again and then say "just kidding, don't touch my back." I ask lots of questions as I get into the wheelchair. They do upwards of 25 of these a day from the sacrum to the neck. No thanks.
I'm wheeled back to the waiting area, stripped of my gown, told to take it easy and am sent home.
My Dad drove me so I look for him in the waiting area. We slowly make our way to the car and as we walk I ask if I can hold his hand. I am so scared, shaken up, and in pain. In the car I cry for awhile. Not fun.
On the whole, I would not recommend this procedure to my worst enemy. I could do it if you put me asleep. Wide awake it was literally torture. Plus, it didn't work at all! I had a numb thigh for a day and that was it. Thanks but no thanks.
It has taken a week for me to recover. Ice packs and sore back. But I have survived and am so thankful it is past now.
Other than this terrible episode on the whole I am doing well. Physical therapy has been a pleasant surprise, I will write on that next time. And we are four weeks into my anti-depressants. Which means I'm starting to feel like things will be OK. Even if I am in constant pain.
Blessings friends. And watch out for those shots in the back. Not recommended!
Thursday, January 2, 2020
CRPS
As a result of repeated surgeries to my left ankle, I have unfortunately developed Complex Regional Pain Syndrome. This is a nervous system disorder and is my body's unfortunate response to the repeated trauma in my foot. This is why I am having such sensitivity and nerve pain.
The special pain doctor I am now seeing diagnosed the condition, and my tumor surgeon agrees. There is no way to know who will develop this secondary condition but it is most common in wrists and ankles. Just like with the Giant Cell Tumor I am in the unlucky minority.
I have all the classic symptoms of this condition. Extreme sensitivity and nerve pain, swelling and redness, shiny looking skin, dry skin, and a strange bruise like pattern. While my sensitivity is limited to my foot, my pain extends to my knee. For example, I can't cross my legs left over right because the pressure on my calf is too painful or I can't maintain child's pose in yoga because its too much pressure on my calf.
My left foot literally hurts all the time. My brain continues to send a signal that I have a burn or an open wound over the top of my foot and on my toes. Its not extreme pain but it is extremely distracting. Imagine the annoyance of a blister that never ever heals. My shoe is always bothering me and my sock is always bothering me but I can't go barefoot. The air literally bothers my foot. I need a sock to block out some of the sensation so I seek out soft socks without too big of a seam.
Meanwhile there is literally nothing wrong with my foot, its all in my brain and my nervous system which is really strange and hard to process. Its enough to drive a person crazy.
The primary medication for this is Gabapentin and we know that's not an option for me. My pain DR currently has me on Cymbalta which is for depression and then also helps nerve pain. It doesn't affect my sensitivity but it does alleviate the random jolts of electric pain I sometimes get. Depression is a side effect of this condition, so I guess anti-depressants are my new normal. As much as I have counseled parishioners to get on meds if needed, it has been a struggle for me to accept this as my only way forward. We may add Lyrica later, which has the same risks as Gabapentin but hopefully with a system full of Cymbalta I can do it. Who knows.
In a week or so I will go in for a sympathetic nerve block in my lumbar region. I am terrified of this as I hate back stuff but oh well, I hope it will help. Then I have three sessions of "de-sensitizing" physical therapy which will no doubt be painful. I'll write and tell you about all the ways I am being tortured.
This has been an extremely difficult New Year and I am really working on holding on to hope. That's my resolution. Keep hope alive.
I was joking with Lars about how awful this all is. The diagnosis is chronic pain and the plan is
1. we put you on meds so you don't go crazy
2. we stick needles in your back
3. we torture you repeatedly
4. surgery again
It can be hard to keep hopes up. Every time someone asks me if my foot is better I don't know what to say. People look so hopeful, and while I have recovered from surgery my foot is not better and not getting better. So, I usually resort to simply shrugging my shoulders, my foots ok. Right now I just keep going and am thankful the pain is simply an annoyance and not unbearable. I can power through my day and I can sleep most nights.
But I miss my old life . . . a lot.
The special pain doctor I am now seeing diagnosed the condition, and my tumor surgeon agrees. There is no way to know who will develop this secondary condition but it is most common in wrists and ankles. Just like with the Giant Cell Tumor I am in the unlucky minority.
I have all the classic symptoms of this condition. Extreme sensitivity and nerve pain, swelling and redness, shiny looking skin, dry skin, and a strange bruise like pattern. While my sensitivity is limited to my foot, my pain extends to my knee. For example, I can't cross my legs left over right because the pressure on my calf is too painful or I can't maintain child's pose in yoga because its too much pressure on my calf.
My left foot literally hurts all the time. My brain continues to send a signal that I have a burn or an open wound over the top of my foot and on my toes. Its not extreme pain but it is extremely distracting. Imagine the annoyance of a blister that never ever heals. My shoe is always bothering me and my sock is always bothering me but I can't go barefoot. The air literally bothers my foot. I need a sock to block out some of the sensation so I seek out soft socks without too big of a seam.
Meanwhile there is literally nothing wrong with my foot, its all in my brain and my nervous system which is really strange and hard to process. Its enough to drive a person crazy.
The primary medication for this is Gabapentin and we know that's not an option for me. My pain DR currently has me on Cymbalta which is for depression and then also helps nerve pain. It doesn't affect my sensitivity but it does alleviate the random jolts of electric pain I sometimes get. Depression is a side effect of this condition, so I guess anti-depressants are my new normal. As much as I have counseled parishioners to get on meds if needed, it has been a struggle for me to accept this as my only way forward. We may add Lyrica later, which has the same risks as Gabapentin but hopefully with a system full of Cymbalta I can do it. Who knows.
In a week or so I will go in for a sympathetic nerve block in my lumbar region. I am terrified of this as I hate back stuff but oh well, I hope it will help. Then I have three sessions of "de-sensitizing" physical therapy which will no doubt be painful. I'll write and tell you about all the ways I am being tortured.
This has been an extremely difficult New Year and I am really working on holding on to hope. That's my resolution. Keep hope alive.
I was joking with Lars about how awful this all is. The diagnosis is chronic pain and the plan is
1. we put you on meds so you don't go crazy
2. we stick needles in your back
3. we torture you repeatedly
4. surgery again
It can be hard to keep hopes up. Every time someone asks me if my foot is better I don't know what to say. People look so hopeful, and while I have recovered from surgery my foot is not better and not getting better. So, I usually resort to simply shrugging my shoulders, my foots ok. Right now I just keep going and am thankful the pain is simply an annoyance and not unbearable. I can power through my day and I can sleep most nights.
But I miss my old life . . . a lot.
Thursday, December 26, 2019
No Gabba Gabba
I've been putting off this post for awhile now as it is most difficult to write. Last time I talked to you I was beginning Gabapentin. When you get this prescription the print out warns that 1 in 500 people may develop suicidal thoughts on this medicine. It turns out that 1 in 500 is me.
At first the medicine was simply making me really emotional. But as the days passed I began to be more and more unable to control my emotions. I was crying at the drop of a hat, which isn't like me. Not that I don't cry at every "Dog's Purpose" ad, just that I don't usually cry during the day, all the time and for no reason.
Less than two weeks into the medicine I was having trouble sleeping and beginning to feel more and more sad. Then one day I just couldn't take it. I skipped lunch and just drove home from work. When I pulled into the garage my brain said, "We could just shut the garage door and leave the car running". I said no.
I came inside and just cried and cried. I had planned to wrap Christmas presents for the kids but I looked at the paper and just cried and cried. I am the queen of Christmas and I love to wrap presents, to say this was out of character would be putting it mildly. This was so far out of character it was bizarre.
Instead of wrapping presents I laid on my bed and sobbed. The voice in my head told me I should simply "pull all my hair out" or "stab myself in the neck." I sobbed and sobbed. And the thing is, nothing was wrong. There was absolutely nothing to be sad about. Yes, I was bummed my foot still hurt but my foot always hurts. Definitely not worth a two hour crying jag.
Finally I perked up a bit and looked again at my bottle of Gabapentin. I began to think maybe the medicine was making me sad. Right on the bottle it says to call the Dr right away if you have mood changes, sadness, depression, or fear. So I emailed my DR and said maybe I needed to get off the medicine, I was extremely depressed.
I made it through that day. It was frightening for me and for the kids. I just kept going even though it was so very hard. Imagine me crying while I was trying to make mac and cheese for their dinner. They didn't understand but I just said my medicine was making me sad.
The next day I heard back from the Dr. His nurse called and told me to titrate off that medicine. But she said the Dr thought that wasn't really a side effect of the meds, and that I needed counseling. Unbelievable! Not that there is anything wrong with counseling but it was so totally the meds! Drs should know the side effects of this stuff. I could have killed myself! How many people has he prescribed that to? I was angry.
I am off the meds now and am feeling completely back to normal. Thank God I survived that episode, took action, and kept myself safe. I have been referred to a pain specialist and have a new diagnosis for what's happening in my left foot. "Complex Regional Pain Syndrome". I'll write more about that and my new treatment later.
In the meantime, watch out for those meds! They really can affect your brain. Take those warnings seriously and listen to your loved ones if they are having a problem with side effects from medications. That stuff is dangerous and Drs aren't always paying attention.
At first the medicine was simply making me really emotional. But as the days passed I began to be more and more unable to control my emotions. I was crying at the drop of a hat, which isn't like me. Not that I don't cry at every "Dog's Purpose" ad, just that I don't usually cry during the day, all the time and for no reason.
Less than two weeks into the medicine I was having trouble sleeping and beginning to feel more and more sad. Then one day I just couldn't take it. I skipped lunch and just drove home from work. When I pulled into the garage my brain said, "We could just shut the garage door and leave the car running". I said no.
I came inside and just cried and cried. I had planned to wrap Christmas presents for the kids but I looked at the paper and just cried and cried. I am the queen of Christmas and I love to wrap presents, to say this was out of character would be putting it mildly. This was so far out of character it was bizarre.
Instead of wrapping presents I laid on my bed and sobbed. The voice in my head told me I should simply "pull all my hair out" or "stab myself in the neck." I sobbed and sobbed. And the thing is, nothing was wrong. There was absolutely nothing to be sad about. Yes, I was bummed my foot still hurt but my foot always hurts. Definitely not worth a two hour crying jag.
Finally I perked up a bit and looked again at my bottle of Gabapentin. I began to think maybe the medicine was making me sad. Right on the bottle it says to call the Dr right away if you have mood changes, sadness, depression, or fear. So I emailed my DR and said maybe I needed to get off the medicine, I was extremely depressed.
I made it through that day. It was frightening for me and for the kids. I just kept going even though it was so very hard. Imagine me crying while I was trying to make mac and cheese for their dinner. They didn't understand but I just said my medicine was making me sad.
The next day I heard back from the Dr. His nurse called and told me to titrate off that medicine. But she said the Dr thought that wasn't really a side effect of the meds, and that I needed counseling. Unbelievable! Not that there is anything wrong with counseling but it was so totally the meds! Drs should know the side effects of this stuff. I could have killed myself! How many people has he prescribed that to? I was angry.
I am off the meds now and am feeling completely back to normal. Thank God I survived that episode, took action, and kept myself safe. I have been referred to a pain specialist and have a new diagnosis for what's happening in my left foot. "Complex Regional Pain Syndrome". I'll write more about that and my new treatment later.
In the meantime, watch out for those meds! They really can affect your brain. Take those warnings seriously and listen to your loved ones if they are having a problem with side effects from medications. That stuff is dangerous and Drs aren't always paying attention.
Thursday, December 5, 2019
Yo Gabba Gabba!
Hey friends! Things are progressing and I am doing well. Monday I saw my doctor and got permission to remove my boot cast. I also got a prescription for Gabapentin. This is a drug commonly given for nerve pain. Boy is it helping! Praise Jesus I can sleep at night. After a month of not sleeping I was becoming a real monster.
The bummer with Gabapentin is the side effects: drowsiness, dizziness, blurred vision, etc. Basically it feels like a great big glass of wine. This is awesome if you are staying home all day to chill. This is less awesome if you have to go to work, write sermons, drive your car, make dinner, etc. I have been trying to find a balance. Yesterday I didn't take it so I could drive the kids to the Orthodontist an hour away. The problem was, my foot was killing me with nerve pain. By the time I did take it, it didn't really help. So . . . that plan didn't work.
Today I am trying to stay on it so it can help the foot. I don't feel as drunk as I did the first day I took it. (There was an $80 unintended Walgreens shopping spree that day) I think overtime I will adjust to it. I am so eager to be without the nerve pain that I am willing to be drowsy. And hey, what's wrong with being chill all day? Hopefully things will balance out in a few weeks.
In other news, my foot is dumb. I don't mean that as an insult I mean it as literally dumb. Defined by Merriam Webster as silent or lacking some usual attribute. Half of my left foot is not feeling. Draw a line from the tip of the toes down to the heal, length wise, and the inside half of my foot feels and the outside half doesn't. Its like walking on a foot that's asleep without the tingling. It's not a pleasant sensation. And it may or may not resolve over time. I told the DR and he said, "yup". That's what happens when you keep cutting in the same spot.
So my dumb foot and me just keep going. We walk the dog in the morning with our stupid looking limp but both her and I are so happy to be outside we don't care. Next week I will try playing the harp with this dumb thing. The pedals won't feel right but we'll figure it out.
I also talked to the DR about the next MRI. It will be late summer before we find out if this surgery worked or if my evil tumor is still in my ankle growing away. Until then, its me and my dumb foot making our way in the world. With the help of a Gabapentin high. Good times.
The bummer with Gabapentin is the side effects: drowsiness, dizziness, blurred vision, etc. Basically it feels like a great big glass of wine. This is awesome if you are staying home all day to chill. This is less awesome if you have to go to work, write sermons, drive your car, make dinner, etc. I have been trying to find a balance. Yesterday I didn't take it so I could drive the kids to the Orthodontist an hour away. The problem was, my foot was killing me with nerve pain. By the time I did take it, it didn't really help. So . . . that plan didn't work.
Today I am trying to stay on it so it can help the foot. I don't feel as drunk as I did the first day I took it. (There was an $80 unintended Walgreens shopping spree that day) I think overtime I will adjust to it. I am so eager to be without the nerve pain that I am willing to be drowsy. And hey, what's wrong with being chill all day? Hopefully things will balance out in a few weeks.
In other news, my foot is dumb. I don't mean that as an insult I mean it as literally dumb. Defined by Merriam Webster as silent or lacking some usual attribute. Half of my left foot is not feeling. Draw a line from the tip of the toes down to the heal, length wise, and the inside half of my foot feels and the outside half doesn't. Its like walking on a foot that's asleep without the tingling. It's not a pleasant sensation. And it may or may not resolve over time. I told the DR and he said, "yup". That's what happens when you keep cutting in the same spot.
So my dumb foot and me just keep going. We walk the dog in the morning with our stupid looking limp but both her and I are so happy to be outside we don't care. Next week I will try playing the harp with this dumb thing. The pedals won't feel right but we'll figure it out.
I also talked to the DR about the next MRI. It will be late summer before we find out if this surgery worked or if my evil tumor is still in my ankle growing away. Until then, its me and my dumb foot making our way in the world. With the help of a Gabapentin high. Good times.
Wednesday, November 20, 2019
The Nerve
It's been awhile since I posted. That's because I am really struggling and I don't want to talk about it.
This has been a difficult few weeks. It is good to put weight on the foot. I am still wearing a big boot but I am able to walk slowly without my cane. Plus, my scar is healing very nicely and I don't have too much swelling. So back to work full time and things look good.
But things don't feel good. I am having nerve pain. A lot of nerve pain. My whole leg below the knee is super sensitive to touch. And my pinkie toe is on fire. It feels like I've had a giant blister and all the skin has peeled off. Nothing is wrong with it of course, everything appears normal. But the pain is intense. Nothing feels good. If I take my sock off to let it breathe after 15 minutes I can no longer stand the pain of the air on my toe.
To make matters worse the pain is always changing. Some days I am ok during the day. Some days, like today, I get waves of pain in all my toes. Today it feels like someone is torturing me with electric shocks administered to my toes at random intervals.
There is no relief for this that I can find. Tylenol and Advil don't touch it. It's not like any normal ache or pain I have had. It is electric pain energy. During the day I just try to ignore it and keep going. During the night I can't sleep at all. I lie in bed and try to relax and accept the pain. It's all in my head right? But my body wants to escape the electricity so my legs just keep kicking. Not fun.
In other news, yesterday I was supposed to be installed as Moderator of my Presbytery. Only I wasn't supposed to be I guess, because I had to resign from that position. It is hard watching that moment pass. I know if it is God's will, I will have a chance again. But still, I am sad. I couldn't get to the Presbytery meeting, I can hardly get through my day. And I can't commit to any committees, I can't even commit to a family summer vacation. I don't know what's happening, when the next surgery is, or how long I will have my foot. The next few years are totally up in the air. So yeah, that touches a nerve too.
So, I haven't posted because I am upset. I know I should feel happy, I have my foot right? But I am really struggling with pain and disappointment and fear. What if this nerve problem can't be resolved? This is the exact brain mapping type pain that I read about when I was studying up on amputation. I am so afraid this will never end and then we will amputate and then this will be my phantom limb pain forever. This is so not the path I wanted to be on.
So yeah. I just keep going. I'm ok. This morning my husband pointed out I always say that, "I'm ok". I think that's because its the only thing I can say. Not being OK is not an option right now. If I keep telling myself I'm ok then maybe I will be.
This has been a difficult few weeks. It is good to put weight on the foot. I am still wearing a big boot but I am able to walk slowly without my cane. Plus, my scar is healing very nicely and I don't have too much swelling. So back to work full time and things look good.
But things don't feel good. I am having nerve pain. A lot of nerve pain. My whole leg below the knee is super sensitive to touch. And my pinkie toe is on fire. It feels like I've had a giant blister and all the skin has peeled off. Nothing is wrong with it of course, everything appears normal. But the pain is intense. Nothing feels good. If I take my sock off to let it breathe after 15 minutes I can no longer stand the pain of the air on my toe.
To make matters worse the pain is always changing. Some days I am ok during the day. Some days, like today, I get waves of pain in all my toes. Today it feels like someone is torturing me with electric shocks administered to my toes at random intervals.
There is no relief for this that I can find. Tylenol and Advil don't touch it. It's not like any normal ache or pain I have had. It is electric pain energy. During the day I just try to ignore it and keep going. During the night I can't sleep at all. I lie in bed and try to relax and accept the pain. It's all in my head right? But my body wants to escape the electricity so my legs just keep kicking. Not fun.
In other news, yesterday I was supposed to be installed as Moderator of my Presbytery. Only I wasn't supposed to be I guess, because I had to resign from that position. It is hard watching that moment pass. I know if it is God's will, I will have a chance again. But still, I am sad. I couldn't get to the Presbytery meeting, I can hardly get through my day. And I can't commit to any committees, I can't even commit to a family summer vacation. I don't know what's happening, when the next surgery is, or how long I will have my foot. The next few years are totally up in the air. So yeah, that touches a nerve too.
So, I haven't posted because I am upset. I know I should feel happy, I have my foot right? But I am really struggling with pain and disappointment and fear. What if this nerve problem can't be resolved? This is the exact brain mapping type pain that I read about when I was studying up on amputation. I am so afraid this will never end and then we will amputate and then this will be my phantom limb pain forever. This is so not the path I wanted to be on.
So yeah. I just keep going. I'm ok. This morning my husband pointed out I always say that, "I'm ok". I think that's because its the only thing I can say. Not being OK is not an option right now. If I keep telling myself I'm ok then maybe I will be.
Thursday, October 31, 2019
Re-Recovery
Yesterday I got my stitches out - all 26 of them. That's only 3 more than last year so I think that's good. They don't use any topical anesthetic to get the stitches out and I was in a world of hurt as some were extremely tight and embedded in my skin. Nothing like someone pulling on a stitch to make you yelp in pain! I was not prepared for this year's stitch removal to be so much more painful than last year's.
I'll spare you the pictures but my Franken Foot makes one hell of a scary Halloween costume!
I got some good understanding of my condition talking with the DR. He cut further down and higher up in my foot so he could see for sure the whole length of the tendon as he searched for the tumor. He did cut the sheath open to view the whole area. Last year's repair to keep the tendon in place did need to be cut but it was strong and he was able to reaffix it with a few stitches.
This time the tumor appears to have only grown back in the foot area and not up high in my calf which is good.
I also got a better idea about how they measure the tumor in pathology. You cannot cut out GCT like a regular cancer tumor which they remove in one lump. GCT is more diffuse and they cut it out piece by piece. That's why it is so hard to get it all and it often grows back.
To send the tumor to pathlogy they squish all the pieces together to make an aggregate measurement. So its not actual tumor size but its how much tumor you had. Last year my aggregate measurement was 8x7 cm. This year I am 4x3.5 so exactly half the size. I think this is good news, as that is a good example of one year's growth. Maybe if it does grow back we can wait longer for surgery? I for one am not eager to do this again.
I am in a boot cast for four more weeks and adding weight bearing as I can tolerate the pain (which isn't very much today). Then we will schedule physical therapy again (not looking forward to that).
In early December I return to the DR and we will discuss next steps and when we might do an MRI to see if the tumor is growing back. In the meantime, more rest and recovery.
I'll spare you the pictures but my Franken Foot makes one hell of a scary Halloween costume!
I got some good understanding of my condition talking with the DR. He cut further down and higher up in my foot so he could see for sure the whole length of the tendon as he searched for the tumor. He did cut the sheath open to view the whole area. Last year's repair to keep the tendon in place did need to be cut but it was strong and he was able to reaffix it with a few stitches.
This time the tumor appears to have only grown back in the foot area and not up high in my calf which is good.
I also got a better idea about how they measure the tumor in pathology. You cannot cut out GCT like a regular cancer tumor which they remove in one lump. GCT is more diffuse and they cut it out piece by piece. That's why it is so hard to get it all and it often grows back.
To send the tumor to pathlogy they squish all the pieces together to make an aggregate measurement. So its not actual tumor size but its how much tumor you had. Last year my aggregate measurement was 8x7 cm. This year I am 4x3.5 so exactly half the size. I think this is good news, as that is a good example of one year's growth. Maybe if it does grow back we can wait longer for surgery? I for one am not eager to do this again.
I am in a boot cast for four more weeks and adding weight bearing as I can tolerate the pain (which isn't very much today). Then we will schedule physical therapy again (not looking forward to that).
In early December I return to the DR and we will discuss next steps and when we might do an MRI to see if the tumor is growing back. In the meantime, more rest and recovery.
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