Needing prayers.

[508mikey]

Well.....when Betty was being transferred to the rehab center, Dad fell in the hospital on his face and he is hurt, please pray for him

Pray that he is ok keep us posted

 

[joevol33]

Well.....when Betty was being transferred to the rehab center, Dad fell in the hospital on his face and he is hurt, please pray for him

Praying for him

 

[Vjcvette]

Praying for him

Thank you and thankfully nothing is broken, he had a CT scan and it looked good so he is at home watching football now, so it is an answered prayer.

 

[Vjcvette]

Pray that he is ok keep us posted

Thank you so much, his CT scan looked good so he is at home watching football now, it is an answered prayer.

 

[Behr]

Speaking of prayer, and thankfully they do get answered. I meant to post last night. I know I said she was okay, but this is Addison, she's doing great. My buddy sent this, can't imagine how scared her parents were View attachment 682673

What a little cutie.

 

[VolNExile]

Well.....when Betty was being transferred to the rehab center, Dad fell in the hospital on his face and he is hurt, please pray for him

 

[Vjcvette]

Thank you @VolNExile , he is good now, we are watching UT play and I am so thankful that he did not break anything, I think that his nose took the brunt of the fall, that and his hands....

 

[Behr]

Thank you @VolNExile , he is good now, we are watching UT play and I am so thankful that he did not break anything, I think that his nose took the brunt of the fall, that and his hands....
View attachment 684321

You both have kind eyes.

 

[Vjcvette]

You both have kind eyes.

Awwh Thanks @Behr

 

[Sgt_Nick_Fury]

Praying for all those still without power or working roads as this cold front hits East TN And the Western Carolina mtns. Son and team tonight were freezing their butts off at baseball practice, and I kept thinking about what it must be like there now in affected areas. I beleive there is snow forcast tonight for some of the areas.

Going to look and see if there's any local group collecting clothes. My dad always made a big deal about getting functional survival wear. I got tons of wool I can't wear anymore....

 

[Vjcvette]

My Stepmother took her first steps a few days ago in rehab since all of this first happened about a month ago and I am so thankful for how far she has come, answered prayers are wonderful.

 

[65YearsAVol]

Praying for everyone on this prayer list and praises to all that have been healed. May God protect all the volunteers for the storm victims and may He comfort those in need. May he guide the lost to seek salvation so that they may know the power of the Holy Spirit. God bless you all. Amen.

 

[C-south]

I’ll take them if you got them. I think I’ve mentioned a time or two in another thread about being diagnosed with cancer last year. I’ll share it and feel free to read it if you want.

Last year at some point I started having a cough. I didn’t think much about it at first but after some time I noticed it just wasn’t getting any better. I had a follow up appointment with my doctor the first week of October about some meds and while there I told him about the cough. He listened to my lungs and all that good stuff and did a chest xray. About an hour after I left my doctor called and said the radiologist saw a mass on my lung and based on where it was at he believed it was some type of cancer. It was a Friday and actually my daughters birthday and we was having a party the next weekend so I didn’t say anything until about a week and a half later.

So it was obviously bad news and it took over two weeks to get a ct scan and see an oncologist. Obviously the scan wasn’t good and when I saw the oncologist based on the scans they thought I had stage 4 lung cancer. Thinking it’s lung cancer they said the first place lung cancer spreads is to the brain. That day they set up a brain mri which came back clean but it was an awful experience. So now we need to get a biopsy.

Now I go to a pulmonologist and do some tests. I have a mass on my lung but he’s now saying I have asthma . The first biopsy attempt was a simple bronchoscopy. We do that and it doesn’t yield enough tissue to come up with anything. Now we do another procedure where they go in my chest and try to get a lymph node but all they get is necrotic tissue so that’s no good. They went ahead and put my port in at this time. The next biopsy was where the put a series of needles anchored on my chest while looking at the ct and pulling tissue from the mass. After this they get some tissue but still not enough to get a full diagnosis. At this point my oncologist rules out lung cancer and believes it’s lymphoma. He starts using words like “curable” so we get a little excited about that. But now they want to another biopsy to be sure. Because the tissue is necrotic with viable tissue kinda spread throughout they decide to do a vats procedure. They make a few incisions on my side and go into my lung with a camera and some tools to get tissue they can use.

Uggghh. I had typed a lot more but it got wiped out. I’ll finish the rest if anybody want a me to

 

[Vjcvette]

I’ll take them if you got them. I think I’ve mentioned a time or two in another thread about being diagnosed with cancer last year. I’ll share it and feel free to read it if you want.

Last year at some point I started having a cough. I didn’t think much about it at first but after some time I noticed it just wasn’t getting any better. I had a follow up appointment with my doctor the first week of October about some meds and while there I told him about the cough. He listened to my lungs and all that good stuff and did a chest xray. About an hour after I left my doctor called and said the radiologist saw a mass on my lung and based on where it was at he believed it was some type of cancer. It was a Friday and actually my daughters birthday and we was having a party the next weekend so I didn’t say anything until about a week and a half later.

So it was obviously bad news and it took over two weeks to get a ct scan and see an oncologist. Obviously the scan wasn’t good and when I saw the oncologist based on the scans they thought I had stage 4 lung cancer. Thinking it’s lung cancer they said the first place lung cancer spreads is to the brain. That day they set up a brain mri which came back clean but it was an awful experience. So now we need to get a biopsy.

Now I go to a pulmonologist and do some tests. I have a mass on my lung but he’s now saying I have asthma . The first biopsy attempt was a simple bronchoscopy. We do that and it doesn’t yield enough tissue to come up with anything. Now we do another procedure where they go in my chest and try to get a lymph node but all they get is necrotic tissue so that’s no good. They went ahead and put my port in at this time. The next biopsy was where the put a series of needles anchored on my chest while looking at the ct and pulling tissue from the mass. After this they get some tissue but still not enough to get a full diagnosis. At this point my oncologist rules out lung cancer and believes it’s lymphoma. He starts using words like “curable” so we get a little excited about that. But now they want to another biopsy to be sure. Because the tissue is necrotic with viable tissue kinda spread throughout they decide to do a vats procedure. They make a few incisions on my side and go into my lung with a camera and some tools to get tissue they can use.

Uggghh. I had typed a lot more but it got wiped out. I’ll finish the rest if anybody want a me to

Praying for healing in your lungs

 

[VolNExile]

I’ll take them if you got them. I think I’ve mentioned a time or two in another thread about being diagnosed with cancer last year. I’ll share it and feel free to read it if you want.

Last year at some point I started having a cough. I didn’t think much about it at first but after some time I noticed it just wasn’t getting any better. I had a follow up appointment with my doctor the first week of October about some meds and while there I told him about the cough. He listened to my lungs and all that good stuff and did a chest xray. About an hour after I left my doctor called and said the radiologist saw a mass on my lung and based on where it was at he believed it was some type of cancer. It was a Friday and actually my daughters birthday and we was having a party the next weekend so I didn’t say anything until about a week and a half later.

So it was obviously bad news and it took over two weeks to get a ct scan and see an oncologist. Obviously the scan wasn’t good and when I saw the oncologist based on the scans they thought I had stage 4 lung cancer. Thinking it’s lung cancer they said the first place lung cancer spreads is to the brain. That day they set up a brain mri which came back clean but it was an awful experience. So now we need to get a biopsy.

Now I go to a pulmonologist and do some tests. I have a mass on my lung but he’s now saying I have asthma . The first biopsy attempt was a simple bronchoscopy. We do that and it doesn’t yield enough tissue to come up with anything. Now we do another procedure where they go in my chest and try to get a lymph node but all they get is necrotic tissue so that’s no good. They went ahead and put my port in at this time. The next biopsy was where the put a series of needles anchored on my chest while looking at the ct and pulling tissue from the mass. After this they get some tissue but still not enough to get a full diagnosis. At this point my oncologist rules out lung cancer and believes it’s lymphoma. He starts using words like “curable” so we get a little excited about that. But now they want to another biopsy to be sure. Because the tissue is necrotic with viable tissue kinda spread throughout they decide to do a vats procedure. They make a few incisions on my side and go into my lung with a camera and some tools to get tissue they can use.

Uggghh. I had typed a lot more but it got wiped out. I’ll finish the rest if anybody want a me to

I'm sorry, that sounds like a total nightmare to go through, on top of the nightmare of the original diagnosis.

I can see you've had a lot of diagnostic tests and procedures! Have you had a PET (positron emission tomography) scan?

Sending up some prayers for you, as well as for your family and your treatment teams.

 

[C-south]

I'm sorry, that sounds like a total nightmare to go through, on top of the nightmare of the original diagnosis.

I can see you've had a lot of diagnostic tests and procedures! Have you had a PET (positron emission tomography) scan?

Sending up some prayers for you, as well as for your family and your treatment teams.

Thank you and the other person. I’ve had a couple pet scans. I’m gonna finish up where I got cut off on my previous post. Things get a little worse then a bit better.

 

[C-south]

I’ll take them if you got them. I think I’ve mentioned a time or two in another thread about being diagnosed with cancer last year. I’ll share it and feel free to read it if you want.

Last year at some point I started having a cough. I didn’t think much about it at first but after some time I noticed it just wasn’t getting any better. I had a follow up appointment with my doctor the first week of October about some meds and while there I told him about the cough. He listened to my lungs and all that good stuff and did a chest xray. About an hour after I left my doctor called and said the radiologist saw a mass on my lung and based on where it was at he believed it was some type of cancer. It was a Friday and actually my daughters birthday and we was having a party the next weekend so I didn’t say anything until about a week and a half later.

So it was obviously bad news and it took over two weeks to get a ct scan and see an oncologist. Obviously the scan wasn’t good and when I saw the oncologist based on the scans they thought I had stage 4 lung cancer. Thinking it’s lung cancer they said the first place lung cancer spreads is to the brain. That day they set up a brain mri which came back clean but it was an awful experience. So now we need to get a biopsy.

Now I go to a pulmonologist and do some tests. I have a mass on my lung but he’s now saying I have asthma . The first biopsy attempt was a simple bronchoscopy. We do that and it doesn’t yield enough tissue to come up with anything. Now we do another procedure where they go in my chest and try to get a lymph node but all they get is necrotic tissue so that’s no good. They went ahead and put my port in at this time. The next biopsy was where the put a series of needles anchored on my chest while looking at the ct and pulling tissue from the mass. After this they get some tissue but still not enough to get a full diagnosis. At this point my oncologist rules out lung cancer and believes it’s lymphoma. He starts using words like “curable” so we get a little excited about that. But now they want to another biopsy to be sure. Because the tissue is necrotic with viable tissue kinda spread throughout they decide to do a vats procedure. They make a few incisions on my side and go into my lung with a camera and some tools to get tissue they can use.

Uggghh. I had typed a lot more but it got wiped out. I’ll finish the rest if anybody want a me to

Part 2

So we do the last biopsy and I’m
In the hospital for about a week. At this point I’m not doing that great. We’re hopeful to get a quick diagnosis and get treatment going but the pathologists are taking their sweet time. We keep calling and sending messages but my doctor can’t do anything because it’s taking pathology forever. The last biopsy procedure was late November and it’s approaching Christmas.

Christmas Day comes and still no word. I’m hanging in there. The day after Christmas is when things start going really bad. I’m home alone and I’m up for a bit and all of a sudden I can barely breathe. I start gasping for air. I kind of panic and call 911 barely able to speak. I get to the hospital and I’m on oxygen, breathing a little better but still not great. I hadn’t had time to call anyone or was really able to but they eventually show up. Shortly after my oncologist and NP show up. After some discussion with other doctors they decide the only option is to put me on life support.

I was on life support a little over two weeks. I don’t remember much except having crazy dreams. During that time they finally came to a conclusion as to what I had and administered my first chemo while on life support. I have a pretty rare lymphoma. It’s called gray zone lymphoma, kind of a combination of Hodgkins and non hodgkins. The chemo is essentially what saved my life at this point. While on life support I had a feeding tube put through my nose, a tracheotomy, and put on a respirator. During this time I suffered from extreme critical illness myopathy and lost roughly 50 pounds. In October I weighed 225. At the ER I was down to 195. When I woke up in icu I was 144. I was essentially a paralyzed bag of bones. I had a tiny bit of movement in my hands and feet and my lips but that was it. Trying to get people to read my lips was a travesty but I won’t get into that. Anyway, I spent almost another week in icu and was moved to another facility to start recovery and a bit of rehab.

So I go to a restorative care facility. There I start improving slowly. They take me off my oxygen. Soon after that I’m off the respirator and breathing good on my own. I still can’t move much but start making baby step improvements with movements in my hands and feet. It started coming back kinda from the outside in albeit at a very slow pace…but it’s progress. I get a painful nerve test to see if I have nerve damage. Neurologists like to scare you. I go for a ct scan that shows some shrinkage in the mass. Next the feeding tube and trach come out. My voice is extremely weak as is my swallowing. They put me on a crappy minced/moist diet that sucked. I’m breathing on my own, eating a little, talk a little, but still can’t move much at all. I can’t sit up. I can’t hold myself up. Can’t feed myself (although before I leave I can use one hand to guide the other and eat on my own). They really don’t rehab me much like we were told. Most of my rehab was me trying to move body parts that wouldn’t move but you would be surprised at how much it helped. That and trying to squeeze a stress ball. My next step is going to a more extensive rehab center with the goal to get strong enough to resume my treatments.

It’s right before valentines at this point and I’m at a new facility with a strict and rigorous rehab regimen. I’m honestly looking forward to it. I still don’t move much except my feet, hands, and arms a little. Still can’t sit up. They pushed me hard. I had 1.5 hours of PT a day., 1.5 hours of OT, and 1 hour of speech. I wont get into too much detail here but from the expectation of leaving in a wheelchair I leave on a walker in mid March. I think march 14.

I’m still far from 100%. Very weak but moving around and able to start treatment up again. We get that going less than a week later. So the initial chemo was ABVD. When we start up again he has me set up for r chop. I guess we kind of start over and do 3 infusions with 3 weeks in between then do another scan. During the treatments I must say I felt like I was getting better but the scan wasn’t great. It showed bit of improvement in one area but was worse in another. They ruled this as progression so we go another route. Now we’re gonna do epoch which is essentially being admitted to the inpatient oncology unit and doing a week long constant chemo drip with a blood transfusion thrown in for good measure. This is right before Memorial Day. So I get out the day before Memorial Day and I’m feeling ok. On the 2nd day it hits me hard. I’m weak, struggling to breathe, no appetite. I get in touch with them and go in to do some blood work thinking I may need another transfusion but it comes back ok. We do another scan and there’s no change. He then sets me up with another oncologist in a different medical facility just to get another set of eyes on things.

I go see my other oncologist. She has dealt with one other case like mine. She decides to do immunotherapy but first she wants to do another biopsy and pet scan just to be sure about things. This one goes pretty smooth and I start treatment right away. I do the first treatment then of course I run into an insurance hiccup. That sets things back a couple weeks but my doctors say it isn’t a big deal and we resume things. We do 2 more infusions and do a pet scan. Finally some good news. To be honest I don’t look at the results I let my fiancé and the doctor handle that. This time there was significant shrinkage in the mass. The deauville grade was the worst it could be but my oncologist was happy with the scan and said the radiologist was wrong about the grade so I’m taking his word. I’ve had a couple more infusions since then and next step is a stem cell transplant but of course I’m having to deal with insurance about that but we’ll get it worked out. As for my current condition: I still have general muscle soreness and pain in my major joints (knees, hips, shoulders). That said I’m getting stronger. My weight is back up to 2 bills and I think my hair is thicker. I appreciate any prayers and make sure to take care of yourselves!

 

[joevol33]

I’ll take them if you got them. I think I’ve mentioned a time or two in another thread about being diagnosed with cancer last year. I’ll share it and feel free to read it if you want.

Last year at some point I started having a cough. I didn’t think much about it at first but after some time I noticed it just wasn’t getting any better. I had a follow up appointment with my doctor the first week of October about some meds and while there I told him about the cough. He listened to my lungs and all that good stuff and did a chest xray. About an hour after I left my doctor called and said the radiologist saw a mass on my lung and based on where it was at he believed it was some type of cancer. It was a Friday and actually my daughters birthday and we was having a party the next weekend so I didn’t say anything until about a week and a half later.

So it was obviously bad news and it took over two weeks to get a ct scan and see an oncologist. Obviously the scan wasn’t good and when I saw the oncologist based on the scans they thought I had stage 4 lung cancer. Thinking it’s lung cancer they said the first place lung cancer spreads is to the brain. That day they set up a brain mri which came back clean but it was an awful experience. So now we need to get a biopsy.

Now I go to a pulmonologist and do some tests. I have a mass on my lung but he’s now saying I have asthma . The first biopsy attempt was a simple bronchoscopy. We do that and it doesn’t yield enough tissue to come up with anything. Now we do another procedure where they go in my chest and try to get a lymph node but all they get is necrotic tissue so that’s no good. They went ahead and put my port in at this time. The next biopsy was where the put a series of needles anchored on my chest while looking at the ct and pulling tissue from the mass. After this they get some tissue but still not enough to get a full diagnosis. At this point my oncologist rules out lung cancer and believes it’s lymphoma. He starts using words like “curable” so we get a little excited about that. But now they want to another biopsy to be sure. Because the tissue is necrotic with viable tissue kinda spread throughout they decide to do a vats procedure. They make a few incisions on my side and go into my lung with a camera and some tools to get tissue they can use.

Uggghh. I had typed a lot more but it got wiped out. I’ll finish the rest if anybody want a me to

We'll be praying for you, sincerely hate that you're dealing with this. Thank you for reaching out, and allowing us to help you pray.

 

[vollygirl]

Part 2

So we do the last biopsy and I’m
In the hospital for about a week. At this point I’m not doing that great. We’re hopeful to get a quick diagnosis and get treatment going but the pathologists are taking their sweet time. We keep calling and sending messages but my doctor can’t do anything because it’s taking pathology forever. The last biopsy procedure was late November and it’s approaching Christmas.

Christmas Day comes and still no word. I’m hanging in there. The day after Christmas is when things start going really bad. I’m home alone and I’m up for a bit and all of a sudden I can barely breathe. I start gasping for air. I kind of panic and call 911 barely able to speak. I get to the hospital and I’m on oxygen, breathing a little better but still not great. I hadn’t had time to call anyone or was really able to but they eventually show up. Shortly after my oncologist and NP show up. After some discussion with other doctors they decide the only option is to put me on life support.

I was on life support a little over two weeks. I don’t remember much except having crazy dreams. During that time they finally came to a conclusion as to what I had and administered my first chemo while on life support. I have a pretty rare lymphoma. It’s called gray zone lymphoma, kind of a combination of Hodgkins and non hodgkins. The chemo is essentially what saved my life at this point. While on life support I had a feeding tube put through my nose, a tracheotomy, and put on a respirator. During this time I suffered from extreme critical illness myopathy and lost roughly 50 pounds. In October I weighed 225. At the ER I was down to 195. When I woke up in icu I was 144. I was essentially a paralyzed bag of bones. I had a tiny bit of movement in my hands and feet and my lips but that was it. Trying to get people to read my lips was a travesty but I won’t get into that. Anyway, I spent almost another week in icu and was moved to another facility to start recovery and a bit of rehab.

So I go to a restorative care facility. There I start improving slowly. They take me off my oxygen. Soon after that I’m off the respirator and breathing good on my own. I still can’t move much but start making baby step improvements with movements in my hands and feet. It started coming back kinda from the outside in albeit at a very slow pace…but it’s progress. I get a painful nerve test to see if I have nerve damage. Neurologists like to scare you. I go for a ct scan that shows some shrinkage in the mass. Next the feeding tube and trach come out. My voice is extremely weak as is my swallowing. They put me on a crappy minced/moist diet that sucked. I’m breathing on my own, eating a little, talk a little, but still can’t move much at all. I can’t sit up. I can’t hold myself up. Can’t feed myself (although before I leave I can use one hand to guide the other and eat on my own). They really don’t rehab me much like we were told. Most of my rehab was me trying to move body parts that wouldn’t move but you would be surprised at how much it helped. That and trying to squeeze a stress ball. My next step is going to a more extensive rehab center with the goal to get strong enough to resume my treatments.

It’s right before valentines at this point and I’m at a new facility with a strict and rigorous rehab regimen. I’m honestly looking forward to it. I still don’t move much except my feet, hands, and arms a little. Still can’t sit up. They pushed me hard. I had 1.5 hours of PT a day., 1.5 hours of OT, and 1 hour of speech. I wont get into too much detail here but from the expectation of leaving in a wheelchair I leave on a walker in mid March. I think march 14.

I’m still far from 100%. Very weak but moving around and able to start treatment up again. We get that going less than a week later. So the initial chemo was ABVD. When we start up again he has me set up for r chop. I guess we kind of start over and do 3 infusions with 3 weeks in between then do another scan. During the treatments I must say I felt like I was getting better but the scan wasn’t great. It showed bit of improvement in one area but was worse in another. They ruled this as progression so we go another route. Now we’re gonna do epoch which is essentially being admitted to the inpatient oncology unit and doing a week long constant chemo drip with a blood transfusion thrown in for good measure. This is right before Memorial Day. So I get out the day before Memorial Day and I’m feeling ok. On the 2nd day it hits me hard. I’m weak, struggling to breathe, no appetite. I get in touch with them and go in to do some blood work thinking I may need another transfusion but it comes back ok. We do another scan and there’s no change. He then sets me up with another oncologist in a different medical facility just to get another set of eyes on things.

I go see my other oncologist. She has dealt with one other case like mine. She decides to do immunotherapy but first she wants to do another biopsy and pet scan just to be sure about things. This one goes pretty smooth and I start treatment right away. I do the first treatment then of course I run into an insurance hiccup. That sets things back a couple weeks but my doctors say it isn’t a big deal and we resume things. We do 2 more infusions and do a pet scan. Finally some good news. To be honest I don’t look at the results I let my fiancé and the doctor handle that. This time there was significant shrinkage in the mass. The deauville grade was the worst it could be but my oncologist was happy with the scan and said the radiologist was wrong about the grade so I’m taking his word. I’ve had a couple more infusions since then and next step is a stem cell transplant but of course I’m having to deal with insurance about that but we’ll get it worked out. As for my current condition: I still have general muscle soreness and pain in my major joints (knees, hips, shoulders). That said I’m getting stronger. My weight is back up to 2 bills and I think my hair is thicker. I appreciate any prayers and make sure to take care of yourselves!

First off, can I just say thank you for typing all of that out for us. That is quite the journey you've been on.

Praying for continued healing, and for knowledgable and caring doctors and nurses.

 

[Vol since 77]

Part 2

So we do the last biopsy and I’m
In the hospital for about a week. At this point I’m not doing that great. We’re hopeful to get a quick diagnosis and get treatment going but the pathologists are taking their sweet time. We keep calling and sending messages but my doctor can’t do anything because it’s taking pathology forever. The last biopsy procedure was late November and it’s approaching Christmas.

Christmas Day comes and still no word. I’m hanging in there. The day after Christmas is when things start going really bad. I’m home alone and I’m up for a bit and all of a sudden I can barely breathe. I start gasping for air. I kind of panic and call 911 barely able to speak. I get to the hospital and I’m on oxygen, breathing a little better but still not great. I hadn’t had time to call anyone or was really able to but they eventually show up. Shortly after my oncologist and NP show up. After some discussion with other doctors they decide the only option is to put me on life support.

I was on life support a little over two weeks. I don’t remember much except having crazy dreams. During that time they finally came to a conclusion as to what I had and administered my first chemo while on life support. I have a pretty rare lymphoma. It’s called gray zone lymphoma, kind of a combination of Hodgkins and non hodgkins. The chemo is essentially what saved my life at this point. While on life support I had a feeding tube put through my nose, a tracheotomy, and put on a respirator. During this time I suffered from extreme critical illness myopathy and lost roughly 50 pounds. In October I weighed 225. At the ER I was down to 195. When I woke up in icu I was 144. I was essentially a paralyzed bag of bones. I had a tiny bit of movement in my hands and feet and my lips but that was it. Trying to get people to read my lips was a travesty but I won’t get into that. Anyway, I spent almost another week in icu and was moved to another facility to start recovery and a bit of rehab.

So I go to a restorative care facility. There I start improving slowly. They take me off my oxygen. Soon after that I’m off the respirator and breathing good on my own. I still can’t move much but start making baby step improvements with movements in my hands and feet. It started coming back kinda from the outside in albeit at a very slow pace…but it’s progress. I get a painful nerve test to see if I have nerve damage. Neurologists like to scare you. I go for a ct scan that shows some shrinkage in the mass. Next the feeding tube and trach come out. My voice is extremely weak as is my swallowing. They put me on a crappy minced/moist diet that sucked. I’m breathing on my own, eating a little, talk a little, but still can’t move much at all. I can’t sit up. I can’t hold myself up. Can’t feed myself (although before I leave I can use one hand to guide the other and eat on my own). They really don’t rehab me much like we were told. Most of my rehab was me trying to move body parts that wouldn’t move but you would be surprised at how much it helped. That and trying to squeeze a stress ball. My next step is going to a more extensive rehab center with the goal to get strong enough to resume my treatments.

It’s right before valentines at this point and I’m at a new facility with a strict and rigorous rehab regimen. I’m honestly looking forward to it. I still don’t move much except my feet, hands, and arms a little. Still can’t sit up. They pushed me hard. I had 1.5 hours of PT a day., 1.5 hours of OT, and 1 hour of speech. I wont get into too much detail here but from the expectation of leaving in a wheelchair I leave on a walker in mid March. I think march 14.

I’m still far from 100%. Very weak but moving around and able to start treatment up again. We get that going less than a week later. So the initial chemo was ABVD. When we start up again he has me set up for r chop. I guess we kind of start over and do 3 infusions with 3 weeks in between then do another scan. During the treatments I must say I felt like I was getting better but the scan wasn’t great. It showed bit of improvement in one area but was worse in another. They ruled this as progression so we go another route. Now we’re gonna do epoch which is essentially being admitted to the inpatient oncology unit and doing a week long constant chemo drip with a blood transfusion thrown in for good measure. This is right before Memorial Day. So I get out the day before Memorial Day and I’m feeling ok. On the 2nd day it hits me hard. I’m weak, struggling to breathe, no appetite. I get in touch with them and go in to do some blood work thinking I may need another transfusion but it comes back ok. We do another scan and there’s no change. He then sets me up with another oncologist in a different medical facility just to get another set of eyes on things.

I go see my other oncologist. She has dealt with one other case like mine. She decides to do immunotherapy but first she wants to do another biopsy and pet scan just to be sure about things. This one goes pretty smooth and I start treatment right away. I do the first treatment then of course I run into an insurance hiccup. That sets things back a couple weeks but my doctors say it isn’t a big deal and we resume things. We do 2 more infusions and do a pet scan. Finally some good news. To be honest I don’t look at the results I let my fiancé and the doctor handle that. This time there was significant shrinkage in the mass. The deauville grade was the worst it could be but my oncologist was happy with the scan and said the radiologist was wrong about the grade so I’m taking his word. I’ve had a couple more infusions since then and next step is a stem cell transplant but of course I’m having to deal with insurance about that but we’ll get it worked out. As for my current condition: I still have general muscle soreness and pain in my major joints (knees, hips, shoulders). That said I’m getting stronger. My weight is back up to 2 bills and I think my hair is thicker. I appreciate any prayers and make sure to take care of yourselves!

I believe I've told you this before, but in case I haven't, Hang in there man! My father has beaten lymphoma twice in the past 7 years and has been cancer free the past 2. His journey has been very much like yours with the scans, testing, chemo, infusions, etc. Keep your spirit high and fight with everything you have! We'll be praying for you

 

[C-south]

First off, can I just say thank you for typing all of that out for us. That is quite the journey you've been on.

Praying for continued healing, and for knowledgable and caring doctors and nurses.

Thanks I truly appreciate it. I’m definitely grateful for the awesome medical team I have.

 

[C-south]

I believe I've told you this before, but in case I haven't, Hang in there man! My father has beaten lymphoma twice in the past 7 years and has been cancer free the past 2. His journey has been very much like yours with the scans, testing, chemo, infusions, etc. Keep your spirit high and fight with everything you have! We'll be praying for you

Thanks and I remember you saying something about it before. I’ve prayed for him as well. Things have definitely taken a turn for the better.

 

[VolNExile]

Part 2

So we do the last biopsy and I’m
In the hospital for about a week. At this point I’m not doing that great. We’re hopeful to get a quick diagnosis and get treatment going but the pathologists are taking their sweet time. We keep calling and sending messages but my doctor can’t do anything because it’s taking pathology forever. The last biopsy procedure was late November and it’s approaching Christmas.

Christmas Day comes and still no word. I’m hanging in there. The day after Christmas is when things start going really bad. I’m home alone and I’m up for a bit and all of a sudden I can barely breathe. I start gasping for air. I kind of panic and call 911 barely able to speak. I get to the hospital and I’m on oxygen, breathing a little better but still not great. I hadn’t had time to call anyone or was really able to but they eventually show up. Shortly after my oncologist and NP show up. After some discussion with other doctors they decide the only option is to put me on life support.

I was on life support a little over two weeks. I don’t remember much except having crazy dreams. During that time they finally came to a conclusion as to what I had and administered my first chemo while on life support. I have a pretty rare lymphoma. It’s called gray zone lymphoma, kind of a combination of Hodgkins and non hodgkins. The chemo is essentially what saved my life at this point. While on life support I had a feeding tube put through my nose, a tracheotomy, and put on a respirator. During this time I suffered from extreme critical illness myopathy and lost roughly 50 pounds. In October I weighed 225. At the ER I was down to 195. When I woke up in icu I was 144. I was essentially a paralyzed bag of bones. I had a tiny bit of movement in my hands and feet and my lips but that was it. Trying to get people to read my lips was a travesty but I won’t get into that. Anyway, I spent almost another week in icu and was moved to another facility to start recovery and a bit of rehab.

So I go to a restorative care facility. There I start improving slowly. They take me off my oxygen. Soon after that I’m off the respirator and breathing good on my own. I still can’t move much but start making baby step improvements with movements in my hands and feet. It started coming back kinda from the outside in albeit at a very slow pace…but it’s progress. I get a painful nerve test to see if I have nerve damage. Neurologists like to scare you. I go for a ct scan that shows some shrinkage in the mass. Next the feeding tube and trach come out. My voice is extremely weak as is my swallowing. They put me on a crappy minced/moist diet that sucked. I’m breathing on my own, eating a little, talk a little, but still can’t move much at all. I can’t sit up. I can’t hold myself up. Can’t feed myself (although before I leave I can use one hand to guide the other and eat on my own). They really don’t rehab me much like we were told. Most of my rehab was me trying to move body parts that wouldn’t move but you would be surprised at how much it helped. That and trying to squeeze a stress ball. My next step is going to a more extensive rehab center with the goal to get strong enough to resume my treatments.

It’s right before valentines at this point and I’m at a new facility with a strict and rigorous rehab regimen. I’m honestly looking forward to it. I still don’t move much except my feet, hands, and arms a little. Still can’t sit up. They pushed me hard. I had 1.5 hours of PT a day., 1.5 hours of OT, and 1 hour of speech. I wont get into too much detail here but from the expectation of leaving in a wheelchair I leave on a walker in mid March. I think march 14.

I’m still far from 100%. Very weak but moving around and able to start treatment up again. We get that going less than a week later. So the initial chemo was ABVD. When we start up again he has me set up for r chop. I guess we kind of start over and do 3 infusions with 3 weeks in between then do another scan. During the treatments I must say I felt like I was getting better but the scan wasn’t great. It showed bit of improvement in one area but was worse in another. They ruled this as progression so we go another route. Now we’re gonna do epoch which is essentially being admitted to the inpatient oncology unit and doing a week long constant chemo drip with a blood transfusion thrown in for good measure. This is right before Memorial Day. So I get out the day before Memorial Day and I’m feeling ok. On the 2nd day it hits me hard. I’m weak, struggling to breathe, no appetite. I get in touch with them and go in to do some blood work thinking I may need another transfusion but it comes back ok. We do another scan and there’s no change. He then sets me up with another oncologist in a different medical facility just to get another set of eyes on things.

I go see my other oncologist. She has dealt with one other case like mine. She decides to do immunotherapy but first she wants to do another biopsy and pet scan just to be sure about things. This one goes pretty smooth and I start treatment right away. I do the first treatment then of course I run into an insurance hiccup. That sets things back a couple weeks but my doctors say it isn’t a big deal and we resume things. We do 2 more infusions and do a pet scan. Finally some good news. To be honest I don’t look at the results I let my fiancé and the doctor handle that. This time there was significant shrinkage in the mass. The deauville grade was the worst it could be but my oncologist was happy with the scan and said the radiologist was wrong about the grade so I’m taking his word. I’ve had a couple more infusions since then and next step is a stem cell transplant but of course I’m having to deal with insurance about that but we’ll get it worked out. As for my current condition: I still have general muscle soreness and pain in my major joints (knees, hips, shoulders). That said I’m getting stronger. My weight is back up to 2 bills and I think my hair is thicker. I appreciate any prayers and make sure to take care of yourselves!

That’s an amazing journey! Thank you for sharing it. I’d hate to be matched against you in a stubbornness contest!

Prayers for your continuing recovery and returned good health!

(And of course the insurance company is trying to interfere with your medical care. )

 

[C-south]

That’s an amazing journey! Thank you for sharing it. I’d hate to be matched against you in a stubbornness contest!

Prayers for your continuing recovery and returned good health!

(And of course the insurance company is trying to interfere with your medical care. )

Thanks. I’m thankful to be where I’m at now. I’m thankful having worked for a great company and for all my doctors and nurses. I can’t say how awesome the company I now use to work for has been. They paid my premiums and held my job as long as they could and went above and beyond with many other things. We knew I would eventually transition to Medicaid and tried to get a jump on it early but these people are complete and utter morons. It’ll get worked out though.

 

[82_VOL_83]

Part 2

So we do the last biopsy and I’m
In the hospital for about a week. At this point I’m not doing that great. We’re hopeful to get a quick diagnosis and get treatment going but the pathologists are taking their sweet time. We keep calling and sending messages but my doctor can’t do anything because it’s taking pathology forever. The last biopsy procedure was late November and it’s approaching Christmas.

Christmas Day comes and still no word. I’m hanging in there. The day after Christmas is when things start going really bad. I’m home alone and I’m up for a bit and all of a sudden I can barely breathe. I start gasping for air. I kind of panic and call 911 barely able to speak. I get to the hospital and I’m on oxygen, breathing a little better but still not great. I hadn’t had time to call anyone or was really able to but they eventually show up. Shortly after my oncologist and NP show up. After some discussion with other doctors they decide the only option is to put me on life support.

I was on life support a little over two weeks. I don’t remember much except having crazy dreams. During that time they finally came to a conclusion as to what I had and administered my first chemo while on life support. I have a pretty rare lymphoma. It’s called gray zone lymphoma, kind of a combination of Hodgkins and non hodgkins. The chemo is essentially what saved my life at this point. While on life support I had a feeding tube put through my nose, a tracheotomy, and put on a respirator. During this time I suffered from extreme critical illness myopathy and lost roughly 50 pounds. In October I weighed 225. At the ER I was down to 195. When I woke up in icu I was 144. I was essentially a paralyzed bag of bones. I had a tiny bit of movement in my hands and feet and my lips but that was it. Trying to get people to read my lips was a travesty but I won’t get into that. Anyway, I spent almost another week in icu and was moved to another facility to start recovery and a bit of rehab.

So I go to a restorative care facility. There I start improving slowly. They take me off my oxygen. Soon after that I’m off the respirator and breathing good on my own. I still can’t move much but start making baby step improvements with movements in my hands and feet. It started coming back kinda from the outside in albeit at a very slow pace…but it’s progress. I get a painful nerve test to see if I have nerve damage. Neurologists like to scare you. I go for a ct scan that shows some shrinkage in the mass. Next the feeding tube and trach come out. My voice is extremely weak as is my swallowing. They put me on a crappy minced/moist diet that sucked. I’m breathing on my own, eating a little, talk a little, but still can’t move much at all. I can’t sit up. I can’t hold myself up. Can’t feed myself (although before I leave I can use one hand to guide the other and eat on my own). They really don’t rehab me much like we were told. Most of my rehab was me trying to move body parts that wouldn’t move but you would be surprised at how much it helped. That and trying to squeeze a stress ball. My next step is going to a more extensive rehab center with the goal to get strong enough to resume my treatments.

It’s right before valentines at this point and I’m at a new facility with a strict and rigorous rehab regimen. I’m honestly looking forward to it. I still don’t move much except my feet, hands, and arms a little. Still can’t sit up. They pushed me hard. I had 1.5 hours of PT a day., 1.5 hours of OT, and 1 hour of speech. I wont get into too much detail here but from the expectation of leaving in a wheelchair I leave on a walker in mid March. I think march 14.

I’m still far from 100%. Very weak but moving around and able to start treatment up again. We get that going less than a week later. So the initial chemo was ABVD. When we start up again he has me set up for r chop. I guess we kind of start over and do 3 infusions with 3 weeks in between then do another scan. During the treatments I must say I felt like I was getting better but the scan wasn’t great. It showed bit of improvement in one area but was worse in another. They ruled this as progression so we go another route. Now we’re gonna do epoch which is essentially being admitted to the inpatient oncology unit and doing a week long constant chemo drip with a blood transfusion thrown in for good measure. This is right before Memorial Day. So I get out the day before Memorial Day and I’m feeling ok. On the 2nd day it hits me hard. I’m weak, struggling to breathe, no appetite. I get in touch with them and go in to do some blood work thinking I may need another transfusion but it comes back ok. We do another scan and there’s no change. He then sets me up with another oncologist in a different medical facility just to get another set of eyes on things.

I go see my other oncologist. She has dealt with one other case like mine. She decides to do immunotherapy but first she wants to do another biopsy and pet scan just to be sure about things. This one goes pretty smooth and I start treatment right away. I do the first treatment then of course I run into an insurance hiccup. That sets things back a couple weeks but my doctors say it isn’t a big deal and we resume things. We do 2 more infusions and do a pet scan. Finally some good news. To be honest I don’t look at the results I let my fiancé and the doctor handle that. This time there was significant shrinkage in the mass. The deauville grade was the worst it could be but my oncologist was happy with the scan and said the radiologist was wrong about the grade so I’m taking his word. I’ve had a couple more infusions since then and next step is a stem cell transplant but of course I’m having to deal with insurance about that but we’ll get it worked out. As for my current condition: I still have general muscle soreness and pain in my major joints (knees, hips, shoulders). That said I’m getting stronger. My weight is back up to 2 bills and I think my hair is thicker. I appreciate any prayers and make sure to take care of yourselves!

Hey C-South, good to see you improving. Your journey has been long and arduous. My wife went through 6 rounds of infusions with 3 weeks between and fortunately had excellent results. Hoping and praying that you continue to improve and good to see that weight come back. If you need some extra, I have plenty to share!!!!