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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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My understanding is that cochlear implants get better all the time. There's quite bit of info online regarding persons with CIs that have returned to being musicians, commercially or for fun and aesthetic satisfaction. That's something you could consider for the future.

Your doctors are the experts, of course, but I've been told that individual taste bud cells are replaced much more frequently than most other cell types, and most patients who experience loss of food taste and "chemo taste" do get normal food taste back, beginning quickly and completing in a few weeks to a few months.

Not in any way to make light of the travails you're going through, of course. 

Edited by jwilly

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Best of luck doc, music and food (and drink) my favs too.

As I age, is both sad and happy, but also grateful to be alive as long as I have.

Kinda surprised there isn't more information about learning how to age well, given so many people have aged.

Or, maybe I just haven't found it.

Life seems much more fragile as I age, I ponder more often now.

 

PS hope you still can enjoy the game now and then.

PS2 if ya in Palm Springs area, stop by, drinks and meal on me :)

 

Edited by delems

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Said a prayer for you DOC. Hang in there and fight the good fight. I really enjoyed your post, I felt it is what I mean. Please keep us posted more often.

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Yeah. Keep on, Doc.  Cochlear implants as mentioned can do wonders - helped a friend of mine a lot in the new world of his recovery. And I have to say I thought Stanky's words were 'hang in and fight the food fight' - which may be exactly what you need.  S! Prayers as always. 

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3 hours ago, sorella said:

Yeah. Keep on, Doc.  Cochlear implants as mentioned can do wonders - helped a friend of mine a lot in the new world of his recovery. And I have to say I thought Stanky's words were 'hang in and fight the food fight' - which may be exactly what you need.  S! Prayers as always. 

I was given an option for ear implants but didn't pursue it as it is WAY WAY WAY beyond my means. They didn't define them as "cochlear" maybe they are more affordable than what I was offered. I have a lot more research to do in this area.

I haven't worked since this began back in January and am kind of unemployable for a little while longer. As a result I am just fighting to keep a roof over my head. Savings are almost gone. Finding a path where I can afford to keep looking after myself (living alone without family as I do) is a huge challenge. None of the "assistance" schemes operated by the county or other statuary bodies have elected to qualify me for financial help. Of course, affording insurance right now is laughable. So i'm hoping the taste thing isn't permanent but the doctor in charge of that cautioned me to not be overly optimistic. I think my particular issue is that the 50 radiation passes they made at my head and neck destroyed the tissues concerned, and that is causing me to suffer these losses now. It's not a chemo taste thing, I actually had my taste buds destroyed by radiation, although I'm sure the chemo destroyed stuff too. Same with the hearing ... the nerves have actually been burned away by radiation. At least, that's my limited understanding so far. Chemo had more to do with the hearing damage though they did say that was not unheard of. Like everything, just have to hope for the best over time, and hope that the time isn't impossibly depressing. ;)

Haven't been given the all clear yet so there's that to to happen before any of this other stuff matters. I want to thank you all for your stellar help in getting me to this moment, as difficult as it is I wouldn't have made it without that help. No thanks can ever adequately express my gratitude.

 

Edited by DOC

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Well it sounds like the doctors have laid out the hand you have been dealt. To me it seems like you got three options.

1) Fold - no coming back from that one. Sounds like the doctors have seen more than few that settled on that option. 

2) Play the hand you are dealt - work on appreciating music with what sensory abilities you have left. Others have gone before you into this. Learn from them. 

                                  Tips for musicians with hearing loss

                                 Programming hearing aids for musicians

                                 Association of Adult Musicians with Hearing Loss

3) Find other outlets to learn about and appreciate. Hiking, Sculpting, Woodworking, Exercising. There are a lot of experiences I wish I had time to do. Maybe once my kids fly to nest and I retire... I can dream...

Making no decision is basically choosing option 1. You're going to need something to look forward to and keep you motivated. 

As for food. That's a hard one. If I could not enjoy the taste of food but obviously had to keep eating I think I would make the decision to just eat healthier. If steak taste as bad as say cabbage...cabbage is cheaper and healthier. Taste depends a decent bit on smell too. Did you lose any sense of smell? I know that doesn't help bring back the enjoyment of food. If I couldn't enjoy the taste of it you might as well give me a Soylent Green nutrition cube to swallow at that point.

                                   

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DOC;

It is entirely possible that the radiation "destroyed" your taste cortex in the brain.  My wife had an identical reaction to the radiation for her brain tumors.  I don't want to give you false hope, but her taste did come back to some level after a year.  If it wasn't for the Metastatic Breast cancer, which there is no surviving past a certain point, it could've come back completely.

VR

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Best wishes man ... really pulling for ya. Setup a patreon account and i'd be very happy to slip you a few bucks every month to put towards the roof over your head part. Every bit helps. Hang in there and fight on.

Edited by ch0ad

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On 7/18/2019 at 2:16 AM, DOC said:

I think my particular issue is that the 50 radiation passes they made at my head and neck destroyed the tissues concerned, and that is causing me to suffer these losses now. It's not a chemo taste thing, I actually had my taste buds destroyed by radiation, although I'm sure the chemo destroyed stuff too.

Just sort of making conversation here...you have all the expertise considering what you experience, and I'm just some internet guy:

Anyway...from an engineering and biomedical perspective, I think if your taste buds and nasal receptors were truly done and non-functional, you'd get no taste sensation at all. Instead you're getting lots of bad taste sensation. That means that something is working. Not very well, and not at all how you want it to work, but sensory action is occurring.

Maybe I don't know what I'm talking about, and maybe you've been told otherwise, but it sure sounds to me more like chemo taste or radiation damage than permanent radiation destruction.

That, it seems to me, might be seen as very encouraging, because it means the mechanisms for improvement over time aren't ruled out. If taste buds are damaged, that maybe is temporary, because they renew even in normal circumstances. If nerve fibers are damaged, they can mend.

I met a woman a few years ago that had been in an auto accident that caused an odd concussion-like closed head injury in which her nasal and tongue sensory nerve bundle was almost severed. No other lasting injury, but she was struggling with slow recovery of the abilities to taste and smell. Recovery was occurring, though. Each bit of recovery was a small victory.

https://www.gofundme.com/f/help-doc-fight-lymphoma/donate

Edited by jwilly

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Ok quick addition to let you know I had a bit of an epiphany regarding the music thing. I'm not going to seek a replacement hobby because music (and my relationship to it) won't let me. Instead ... I'm going to take these magnificent guitars I built (you didn't know that I put together rather nice partscasters ... did you ?  :cool:  )  and employ my new hearing to develop my unique musical voice ... since I don't hear frequencies the same as others around me any more I might end up with a tone that is way more interesting than I would have if my hearing was normal. Kind of like speaking a different language than the one I grew up with ... my accent will be a little strange. Not sure if I'm explaining this well, but I have renewed motivation to be "that guy that sounds different" on the instrument. Being as what I hear ISN'T what my audience hears ... it might actually be a blessing in disguise. 

Nothing else to report (so far) but I'll let you know where my head is at as it comes to me. Even if it's half way up my own arse. :huh:

PS: it's going to be a slow process. I'm slightly incapacitated in several ways right now, but I think I'm turning some kind of corner. A lot of what I need to do I am unable to for a little longer. It can't last forever.  :popcorn:

Edited by DOC

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