If y'all see Rich roaming the halls

Prayers are with you ETLS. It the setbacks that drive you crazy. Hoping all goes well with the lymph node removal. :thumbsup:


All is well with that removal, but I've lost some feeling across the left shoulder blade up to the armpit. My blood pressure is running low with the latest reading being 98/64 pulse 90 bpm and oxygen saturation @ 91%

I'm still running a fever 100.1,
 
Since nothing positive from blood cultures, they've determined it is malignancy related. It has advanced all across the roof of my mouth with just a small fraction of gums/teeth uncomsumed. I have always felt this was the case.

In the beginning I didn't have much fever at all. As it has progressed it's more prevalent than before. They're trying different antibiotics but so far nothing has slowed the fever nor the advancement of this massive "growth". Once it has consumed/transformed my upper palate, what next? Where does it go from there?

Certainly it isn't going to come to a halt and say, "Well boys, that was a fun trip."

I don't have a clue. I believe it may be spreading to my tongue. The left side hurts, but there is a lower tooth in that area so that may be a contributing factor.

I just went to do my morning routine and looked at my tongue, it was covered in a film that reminds me of bentonite clay, so I brushed the hell out of it and most is gone. I went as far back as I could but there remains a slight bit more.

Maybe the ENT will get by today and give it a go.

I'm certainly tired of being here, my arms are bruised up and down, some of my veins are hard as a brick and protruding from where they inserted an IV that got bent. How can I NOT bend both arms when I have to remove and clean my cannula, or during a feeding tube session.

The level of care has greatly diminished in quality. I understand I'm not the only tumor in town, but when I push the call nurse button and it takes almost a full hour before it gets answered, seems kind of slow. To answer, then tell me "I'll send your nurse down" but she never shows, what is up with that?

I used to get my vitals checked once every 4 hours, the past 36 hours have just been a fever check. They cannot discharge me until I've maintained a normal or below temperature for xx period of time.

Another day in the life...
 
At noon I'm going in for lymph node extraction from my left armpit. Doc said I may lose some feeling in my arm. That certainly doesn't sound like much fun.
Due to neuropathy, both legs from toes up to me bum are numb. Both arms from finger tips to shoulder are numb. I mean completely numb.
You adapt. You go on.
 
Robert,
It is distressing to learn more about your situation. I know from experience the frustration of slow response from care givers and the tedium and helplessness of extended hospital stays. I truly wish we could do more for your situation than pray, but that’s all I’ve got from here. We ARE with you in spirit. Try to keep that positive attitude of yours. And vent here as much as you need to. We are listening. Praying for healing, grace and mercy.
Bob
 
Since nothing positive from blood cultures, they've determined it is malignancy related. It has advanced all across the roof of my mouth with just a small fraction of gums/teeth uncomsumed. I have always felt this was the case.

In the beginning I didn't have much fever at all. As it has progressed it's more prevalent than before. They're trying different antibiotics but so far nothing has slowed the fever nor the advancement of this massive "growth". Once it has consumed/transformed my upper palate, what next? Where does it go from there?

Certainly it isn't going to come to a halt and say, "Well boys, that was a fun trip."

I don't have a clue. I believe it may be spreading to my tongue. The left side hurts, but there is a lower tooth in that area so that may be a contributing factor.

I just went to do my morning routine and looked at my tongue, it was covered in a film that reminds me of bentonite clay, so I brushed the hell out of it and most is gone. I went as far back as I could but there remains a slight bit more.

Maybe the ENT will get by today and give it a go.

I'm certainly tired of being here, my arms are bruised up and down, some of my veins are hard as a brick and protruding from where they inserted an IV that got bent. How can I NOT bend both arms when I have to remove and clean my cannula, or during a feeding tube session.

The level of care has greatly diminished in quality. I understand I'm not the only tumor in town, but when I push the call nurse button and it takes almost a full hour before it gets answered, seems kind of slow. To answer, then tell me "I'll send your nurse down" but she never shows, what is up with that?

I used to get my vitals checked once every 4 hours, the past 36 hours have just been a fever check. They cannot discharge me until I've maintained a normal or below temperature for xx period of time.

Another day in the life...
I have had health "Care" like yours. It is borderline malpractice in cases. But that is not very helpful at this distressing time.

I feel for you. I suppose no way of going somewhere else ??

Hang in there. Its darkest just before the light. You will kick this thing to the curb. Keep the faith.

Frannie
 
Rob, have they checked you for an autoimmune disease? Also, deep vein thrombosis can also manifest an unexplained fever as can bacteria or fungi. Those don't normally show up in typical blood cultures. An unexplained fever that is non viral can be a tricky diagnosis
 
With that "fever" you are experiencing, there def is an infection that indicates that the immune system is doing its darndest to cope with all that has been thrown in the medical fray. Then, introducing antibiotics in the hope of dealing with the main malignancy may be causing secondary infections as evidenced in your mouth. My thoughts are at best...guesses.

It's a delicate balance to get the chemical situation under control, as evidenced by the ramifications that you are experiencing.

My heart goes out to you a this time with your ongoing struggles, and I admire you for the positive attitude that you continue to share at this troubled time.


My prayers go out to you, sir. You are a benchmark of both strength of character and sharing total doggedness as you endeavour to deal with your ailment!

God bless,

Q
 
They booted me from the hospital hem my Medicare limit hit. I'm home, very weak, and most of my time is sleeping. I'm fighting like hell. Maybe when the weather gets better and the Oncology center opens again, things might improve.
 
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