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Help "Doc" fight lymphoma

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So g'day WWIIOL peeps. I'm still hanging in there, but it's gotten pretty ugly. Hopefully the bottom out has occurred and we'll start to swing back from here. I'm confined to my house unless it's a critical reason to leave (like treatment) because my infection risk is at its maximum while my blood and immune system have reached a critical low. Last review the said I'd lost 20% of my muscle mass. I do feel like a 2 day old kitten with respect to strength and endurance. My blood condition is below the basement, it's low enough I may require full transfusion to get it started again come review time. The first phase of treatment is now completed. When a month has passed clear of the radiation and chemo we begin the analysis and diagnosis stage of phase 1 and that's when I'll see how my progress has come along. They say I won't be fully clear of the consequences and in "rebuild" mode until 4 to 6 weeks after the close of treatment, given the cancer is in complete remission. In a couple of weeks I'll know if I have to endure more of this mind bendingly awful treatment or not. There were a few moments I didn't think I was going to make it, but they did warn me my treatment plan was the worst most debilitating treatment program schedule they could create. It makes success more likely but enduring it much more difficult. I'm not able to eat or drink normally (orally) and that  may be the case for some time to come. Feeding, hydration and nutrition is all via hardware installed into my gut. Not pretty and requires constant attention. However ... I am optimistic right now as the last day has been the easier than the last 3 months of this nightmare and maybe we are turning the corner as I head into review status late next week. Lot's of scans and biopsies to do once review begins. Thank you for all the support it has meant more to me than I can ever express. I'm impatient for some normalacies to return but the medico's tell me to hang on and wait. It may be months before I can be even slightly normal given the treatment has done the job. I kind of knew I wouldn't be in "mend" mode until the end of summer but as usual I am in a hurry to be rid of this fugging nightmare. I know now I shall never experience anything with this level of suck ever again, so by the end of the year maybe I'll be the happiest [censored] that ever lived. We shall see. < !S! >

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On 4/21/2019 at 0:12 PM, jwilly said:

I once dated a woman who had experienced an odd closed head injury in an auto accident that damaged the sensory nerve bundle from the face to the brain. She was slowly recovering her impaired sense of taste, but more slowly for the tongue based sensing ability than for aroma sensing based in the nose. So, she tended to add extra salt, sugar and pepper to prepared foods to strengthen those aromatic flavor experiences. She also liked hot food because it has stronger aromas.

I gather than your tongue is impaired by your treatment. How about your nose?

I cannot eat by mouth because my throat is completely FUBAR right now. From tests earlier when it was still possible, the level of pain was just part of the issue ... everything tastes like poison and I want to throw up it's so nasty. Not sure about the nose aspect. I graduated to limited oral passage of "creamy" stuff just today (yogurt) and after the weekend hope to be able to take on soup. Real solid food is going to take a bit longer because just trying to chew it enough to get through my throat I begin to have a gag reflex causing me to throw up. This is going to take awhile.

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So many of us are rooting for your success in kicking this thing's ass, Doc. Keep up the good fight. No doubt, you are one of the best at pressing through and fighting hard as needed. S! 

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Yogurt is a good start though in regard to straightening out the population of gut bacteria, which is probably haywire like everything else.

There's increasing research these days that the gut bacteria affect mood and other elements of psychological and physical health other than the obvious nutritional connection. 

For instance: http://isiarticles.com/bundles/Article/pre/pdf/154209.pdf

Quote

everything tastes like poison

That sounds like probably your sense of smell is haywire, too. Maybe at some point soon it'll be time to begin re-exposing your smeller to "good" smells, sanitized rather than from the outside world because of your hobbled immune system, and not necessarily in conjunction with things you're supposed to eat but just to get that sensory functionality up and running so that when you're ready for it, it's ready for you.

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go Doc! S!  you should post your diet in OT - sounds a  lot like the stuff those guys are trying. 

 

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It's a very though match, but you will win this Doc. You're a winner!

!S

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So apart from all that, you’re not too bad.  ;-)

It’s a long road, but it’ll be worth it in the end.  

 

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Thanks for the update Doc....I have thought of you and how your doing...looks by the way things are going you are ready to start the climb up to good health.  Hang in there bud! S!

 

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On 5/24/2019 at 3:07 AM, DOC said:

I cannot eat by mouth because my throat is completely FUBAR right now. From tests earlier when it was still possible, the level of pain was just part of the issue ... everything tastes like poison and I want to throw up it's so nasty. Not sure about the nose aspect. I graduated to limited oral passage of "creamy" stuff just today (yogurt) and after the weekend hope to be able to take on soup. Real solid food is going to take a bit longer because just trying to chew it enough to get through my throat I begin to have a gag reflex causing me to throw up. This is going to take awhile.

This sounds rough, but you've shown yourself to be tough . . . and attitude matters a lot.

My brother had a break from his stage 4 colorectal cancer for a couple months.  The docs mistook his dehydration and near kidney failure for the ill effects of the chemo and so stopped his treatment prematurely.   Hydration brought his kidneys back, but now he's got lesions in his liver and his lungs.  The docs have since apologized to him for stopping the treatment . . . cold comfort.  He had a brain MRI this past week and his brain is in the clear so far, and the new round of shunt-fed chemo is working.

He's determined to fight and I am witnessing that his determination is making a difference.  He's asked for the highest dosing he can get and he's getting it.

Being able to eat yogurt after not being able to eat at all . . . is a victory.

Let's hope there is soup for you next week!  ;)

 

 

 

 

 

 

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He's waiting on oncology to set the review of the recent scans. Treatment is on hold until after review. It's bloody nice to be free of radiation and chemo and to experience side effects diminish rather than get worse. First time in 6 months it hasn't been worse being awake than asleep. Still a long way to go but am optimistic that we might have beaten the cancer (so far) but we still have to win the recovery ... which is mooted to be a hard road as well. I am being well advised and trying to not get ahead of myself. My hearing unfortunately ... the loss that they originally said would be temporary has been diagnosed last week by the hearing specialist as permanent. The tests they ran pinpointed all the frequencies I have lost, and they are all the ones you need for clarity and ... most importantly to me (as a musician) harmonic detail. That was a major blow. I'm still very depressed about that.

I'll be getting some more detail about other "side effects" that may or may not be permanent damage as a result if the treatment. I'm hoping the food thing isn't in that category because as it stands right now there is no joy in tasting anything, I'd almost rather keep doing the hardware ingestion process even though it is ugly and awful and has to end ... but it is at least not like eating poison. I guess if I'm complaining about the loss of being able to detect flavor other than poisonous garbage I must be in a better place, eh ! So you'll never enjoy a steak again, big deal right ? (excuse my being facetious)

Well anyway ... here's to a good result when the review comes in (2 weeks away) and now to tackle life without missing the things the treatment has taken from me that I will maybe never enjoy again. The recent news that these losses are probably permanent severely knocked my optimism down to the ground. My well being doctor (they have those) told me that I was entering the phase where I might again have a life, but that the toughest part of that good news is I might have to find a reason to want to live it without the joys I once couldn't imagine living without. He said this was what did most survivors in. They survived the disease but they couldn't cope with what it took away as being what they had left to go forwards with. I get where he's coming from. I hope we beat the disease (I feel like we have but it's not confirmed) but miss the music and the simple taste of good food so much that to never know them again is going to be very depressing. Trying to stay positive. Bankruptcy isn't helping either. 

I am trying to lay this out without pride or fear of revealing things I would normally keep private. Maybe it will help others to see inside what is happening here, even if it's just a glimpse. I'm not seeking sympathy. Lord knows I've had mountains of that. It's been a humbling experience. I'm going to fight on but I fear for how I'll be feeling  as the days unfold even if we do beat it. That's just the honesty in me talking. I totally understand why those who can no longer live a life  they enjoy ask the world to let them die in peace. The things that made them laugh and smile still exist outside of them, but the sadness in between that they carry for the loss of the simple pleasures, the ones that make up most of our lives ... just squashes their motivation like a bug under a boot. I can't imagine no more musicianship and for basic nutrition to always taste like ... well it's hard to describe but it tastes awful. Where sitting down to eat because you can't survive without food, is like ... enduring pain or something similar. Where eating is not enjoyable. My well being doctor says "well congratulations because that's exactly what you might have to do."

Before today I thought the hard part was surviving the treatment. It's amazing how the goal posts shift while you're moving down the ground thinking you're gonna kick some goals.

 

Edited by DOC

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