Needing prayers.

#5,652
#5,652
82_VOL_83 said:
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!!!!
Click to expand...

Ha. Thanks man but I’m sure I’ll keep getting my own back. Glad to hear your wife’s treatment went well
 
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#5,653
#5,653
Wow....you are a miracle and continued prayers for healing and recovery.
C-south said:
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!
Click to expand...
 
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#5,655
#5,655
Say one for my mom. She was having a bad headache, and BP was really high. Dad took her to quick care, and they shipped her to the ER. They did a ct scan, and told her she didn't need to leave, that she needed to stay, and they were having a neurologist do a video call. That little hospital doesn't have one there all the time. Haven't heard anything else yet.
 
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#5,656
#5,656
joevol33 said:
Say one for my mom. She was having a bad headache, and BP was really high. Dad took her to quick care, and they shipped her to the ER. They did a ct scan, and told her she didn't need to leave, that she needed to stay, and they were having a neurologist do a video call. That little hospital doesn't have one there all the time. Haven't heard anything else yet.
Click to expand...
Praying, Joe. 🙏
 
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#5,657
#5,657
They were afraid she was having a stroke, but thank God she wasn't. It appears she has a pinched nerve in her neck causing the pain, headache, and BP to be that high. They got it down, but it's still high, appreciate it guys.
 
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#5,658
#5,658
joevol33 said:
Say one for my mom. She was having a bad headache, and BP was really high. Dad took her to quick care, and they shipped her to the ER. They did a ct scan, and told her she didn't need to leave, that she needed to stay, and they were having a neurologist do a video call. That little hospital doesn't have one there all the time. Haven't heard anything else yet.
Click to expand...
Prayers up!
 
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#5,659
#5,659
The way my wife looked at me on Tuesday, I know she didnt know who I am.

She fell this morning, and the nh took her to the er. She has had another stroke. The glioblastoma tumor has regrown.

The plan is to keep her comfortable.

Please keep my family in your prayers.
 
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#5,660
#5,660
GordonC said:
The way my wife looked at me on Tuesday, I know she didnt know who I am.

She fell this morning, and the nh took her to the er. She has had another stroke. The glioblastoma tumor has regrown.

The plan is to keep her comfortable.

Please keep my family in your prayers.
Click to expand...
I'm sorry man, we're praying. If you need to vent, reach out.
 
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#5,666
#5,666
GordonC said:
The way my wife looked at me on Tuesday, I know she didnt know who I am.

She fell this morning, and the nh took her to the er. She has had another stroke. The glioblastoma tumor has regrown.

The plan is to keep her comfortable.

Please keep my family in your prayers.
Click to expand...
Brother, I don't know what to say other than prayers up. She and you are in my heart.
 
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#5,668
#5,668
We appreciate the prayers, Zoners
I have never seen anything like this glioblastoma......ever....E.V.E.R.
It is still surreal
The tumor is larger than it was in March, and further surgery is not an optional
She's had no cognitive baseline in months....I do not want her to suffer any more, so I've told them whatever it takes to keep her comfortable
 
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#5,669
#5,669
GordonC said:
We appreciate the prayers, Zoners
I have never seen anything like this glioblastoma......ever....E.V.E.R.
It is still surreal
The tumor is larger than it was in March, and further surgery is not an optional
She's had no cognitive baseline in months....I do not want her to suffer any more, so I've told them whatever it takes to keep her comfortable
Click to expand...
I’m really sorry Gordon. I know words don’t mean much but all I can offer is continued prayers for peace and comfort.
 
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#5,671
#5,671
GordonC said:
We appreciate the prayers, Zoners
I have never seen anything like this glioblastoma......ever....E.V.E.R.
It is still surreal
The tumor is larger than it was in March, and further surgery is not an optional
She's had no cognitive baseline in months....I do not want her to suffer any more, so I've told them whatever it takes to keep her comfortable
Click to expand...
So sorry to hear this news and prayers for your wife, you and your family.
 
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#5,672
#5,672
My Stepmother Betty had a heart attack in rehab but she came through it and is doing ok back in rehab and please keep her in your prayers and also I heard some heartbreaking news about a friend of mine, he is on life support and his wife will be saying her goodbyes, so I am praying for this family
And all prayers are appreciated.
 
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#5,673
#5,673
Vjcvette said:
My Stepmother Betty had a heart attack in rehab but she came through it and is doing ok back in rehab and please keep her in your prayers and also I heard some heartbreaking news about a friend of mine, he is on life support and his wife will be saying her goodbyes, so I am praying for this family
And all prayers are appreciated.
Click to expand...
Praying
 
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#5,674
#5,674
GordonC said:
The way my wife looked at me on Tuesday, I know she didnt know who I am.

She fell this morning, and the nh took her to the er. She has had another stroke. The glioblastoma tumor has regrown.

The plan is to keep her comfortable.

Please keep my family in your prayers.
Click to expand...
I am so sorry. Praying for all of you.
 
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#5,675
#5,675
Vjcvette said:
My Stepmother Betty had a heart attack in rehab but she came through it and is doing ok back in rehab and please keep her in your prayers and also I heard some heartbreaking news about a friend of mine, he is on life support and his wife will be saying her goodbyes, so I am praying for this family
And all prayers are appreciated.
Click to expand...
Praying V.
 
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