Longish non PD update about stuff and things

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WomanInterrupted

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Longish non PD update about stuff and things
« on: February 15, 2020, 04:14:34 AM »
Things have been going pretty well with my treatment - I haven't gotten sick, the indigestion is kept down to a dull roar with Omeprazole (generic Prilosec, on a temporary basis) and my mouth stopped feeling like 10,000 paper cuts, once I figured out eating hard ginger snaps is a REALLY bad idea.  :doh:

As it is, I can barely manage a piece of soft bread with melted cheese and butter - I can't really taste it, and lately it's been feeling more like eating a Brillo pad, so my mouth is mainly used for swallowing liquids and meds.  My actual nutrition comes from my PEG tube - and those supplies come from Amazon, of all the places.   8-)

Yeah, hip to this:  you have a PEG tube installed and your insurance pays for it but they won't pay for formula unless you buy plastic goods and supplies for that tube, because they don't believe you actually had a tube installed unless it needs regular supplies and not just formula.

This might explain a few things about health insurance costs in the US.   :roll:

I have lots of creams, potions and lotions for my mouth, throat and skin - but I'm really not in that much pain.  It's more like discomfort and a constant state of dry-mouth, but I DO wish I'd stop burping and farting rotten lettuce - my formula is plant-based, so I've basically gone vegetarian.   :P

I'm kind of surprised my entire body didn't go into some kind of catatonic state, if you want the truth - but then again, if you put a plate of meat in front of me, I'm just going to cry because I can smell it - but I can't taste it and the thought of chewing it...no.  That's not going to happen for at least 3 weeks.

I have 2 more weeks of chemo (on Wednesdays) and radiation (daily), then I meet with "Doug" the Chemo Guru on the 28 and then?

I really don't know!  ;D

I think I have a PET scan in the middle of May, and I'll be followed by my ENT too, but I really have no details except I'll be counting the seconds until my taste buds start to come back and then food?  It.  Is.  ON!   :evil2:

The importance of the PEG tube and the formula are to keep your nutrition level and weight stable - but closer to the end of treatment, while I'm waiting for my mouth and buds to come back online, I  plan on losing a bit of weight (no more than 5 pounds) because I have no idea what's going to happen when I can start choking down Pu Pu Platters, chicken wings and blue cheese, BACON, rare red meat, chocolate, and all manner of other things that aren't exactly healthy or good for me (but I don't CARE).

What's being treated (radiation-wise) is one tiny spot on the left underside of my jaw, midway between the back of the jawbone and the front, and on the right, the entire thing from my jaw to my clavicle, just kissing where the thyroid is.

And what that means is I have to find a primary doctor (I have one picked - DH's - and I just didn't want to throw her in, in the middle of this mess!  I'd rather have her come in at the end and only have to worry about tracking down paperwork) to have my thyroid checked often.  :yes:

And thankfully, the doctor I've chosen is NOT a Big Pharma fan, so she won't be shoving a bunch of pills at me, without asking me to have a holistic or naturopathic consult *first.*  :yahoo:

This is the thing that cracks everybody up, once it comes to light - I've been a holistic pet practitioner for over 30 years, and I get stuck with all the nastiness of chemo and radiation.

Totally figures, right?  :phoot:

Things were going very well,  but Jackie Cat, 14, who has had liver disease of unknown etiology for over 5 years, started doing poorly, and I thought it was just one of those things - like it usually is.  Get her hydration straightened out, force-feed her a few meals, keep up her supplement regimen and she'll be right as rain.

Except this time, she wasn't.  I've known her kidney numbers are up, too (it often comes with the territory, when liver disease is involved), and it became pretty clear to me last Saturday that this was the end.

Jackie passed away at around 1:15 in the morning, and I *thought* I was going to be okay - until Louis, 16, who'd also been doing his semi-usual "stomach thing" (diarrhea and vomiting for NO reason anybody can figure out - takes a few days of hydration and force feeding, but he's always been fine)  wasn't actually doing his stomach thing - he was exhibiting the same signs of kidney failure that Jackie was showing, and passed away Sunday night around 11PM.

I've lost plenty of pets over the years and had two that came 14 days apart, but never had two pass within 36 hours of each other. 

I'd been handling Jackie's passing okay -but Louis?  I wasn't fit for public consumption, had NO time to process it and here I had to be at radiation and chemo, when I'd rather be hiding under the covers.

Thankfully, people understood and mostly left me alone to grieve in peace - and not one person asked me why I'd put Louis in the freezer.

For those of you who don't live in a  frozen place - we do.  And my DH had left for a trip earlier that day.  I couldn't dig a hole - well, not a deep enough hole for a grave.  I know some people are okay with putting deceased pets in the trash - and that's okay - but it's not something I'm comfortable with. 

And yes, I avoided that freezer for the entire week except to face my fear, look in it and be certain Louis really was gone when I placed him there.  My mind was trying to play tricks - I let facts and reason shut them down, and when DH came home today, he dug a proper grave.  :'(

We had a small service, just like we did for Jackie, and DH is kind of marveling at how the Residents act like nothing is wrong.

Hell, I've been here all week and they haven't broken a sweat - I think they knew long before we did that something was wrong, and the Brave New, New World probably feels like *relief* to them.

So we're down to 7 cats - and that's the thing that hurts most of all.  Jackie and Louis won't be here when they tell me I'm cured - but I'm also starting to wonder if they had a talk and said, "Let's get the hell out of here while we know they're going to be okay!"   :bigwink:   :stars:

DH  had a mole on his jaw that just showed up one day as a dark blotch, about 15 years ago, and the blotch kept spreading - in the past several months, it turned into a bump that was sticking off his face and getting bigger by the week, so I asked him to go to a dermatologist and he kept blowing me off until I got a bit testy and said, "Do you REALLY want to go through all this bullshit, or would you rather hit the EASY button, have the thing removed and Bob's your uncle?"   :ninja:

DH had it removed - and parts of it are pre-cancerous.  The dermatologist wants him back in a few weeks, just to be sure the margins are good and nothing else has to come off.  :thumbup:

The site looks good to me - and DH actually thanked me for getting on his ass.  :kisscheek:

Currently, I'm just practicing good self-care and nesting - not accumulating, but cleaning, repairing and decluttering.  :)

I finally got rid of all those VHS tapes we thought were so important, but haven't actually watched since the early 2000's, and have boxes for Goodwill - and a parrot rescue in the next city.   8-)

I started putting all the supplies for my projects in the same place and I'm actually mortified to say I have HOW many rolls of sisal rope, because I kept forgetting I had it and ordering more - I probably have enough to turn our entire dining room - table, chairs, buffet, walls and all -  into a rope-covered cat tree!   :aaauuugh:

I might donate a few rolls to the parrot rescue - I found an old cage and cage parts I'm going to deliver, because it's a LOT cheaper than shipping (and there's a cat rescue I like, not far from them.  I wouldn't mind paying them a visit.)  :)

Yeah - my mind wanders to adoption, not as a  sign of disrespect to Jackie, Louis or any of those who have gone before them, but as a sign of respect, gratitude and love - love can't just be shut off and closed up in a box, shuttered away to languish in the dark.

It doesn't work like  that - love begats love, and love is the answer.

The answer will take time to find, but we're prepared to look. 

In a few weeks, I'll be shot out of the wormhole, back into my own life  - well, more or less.  I still have quite a bit of hair to regrow, but at least the pelt is starting to come back, if you know what I mean and I think you  do!   :rofl:

And my eyebrows have stopped falling out -always a plus.   :thumbup:

Oh!  And in the middle of all this, the nursing home called to let me know they're moving Ray to a semi-private room.   :roll:

I said, "Good luck with that..." - and figured I'd start getting weekly  calls, at which time I was going to advise the social worker I was blocking their number because I have more important things to be worried about, but mercifully, it's been quiet  - and that was about a month ago.

Ray doesn't know about any of this - I don't know what Ray knows anymore, but I DO know it's nearly a month from his 4-year anniversary of being pulled out of the house (Mar 29) and that he's not over there, adding more stress to  our lives with his constant demands and unbearable selfishness.

That alone makes everything *much* easier.  I can  focus on what's necessary instead of a bunch of superfluous bullshit and Ray screaming to look at  HIM.

I'm going to be cured -  and I'm going to come out of this with what's left of my sanity intact.   :)   :elephant:

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Andeza

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Re: Longish non PD update about stuff and things
« Reply #1 on: February 15, 2020, 04:35:22 AM »
You have my sincerest condolences on the loss of your beautiful fur babies :'( We have four. I get it. May you find the perfect new residents to love in the course of time.

Very glad to hear you are making progress and expecting a full recovery. May you find time for Netflix or whatnot covered in snuggling kitties. It's the best thing ever. Purring is good for the soul, and I fully believe, it helps us heal. :yes:

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practical

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Re: Longish non PD update about stuff and things
« Reply #2 on: February 15, 2020, 09:00:45 AM »
Happy to hear you manage to keep your spirits up and still have some black humor remaining. Good for you for getting DH to see a doctor in time. So sorry about the loss of your two cats :hug: . Hang in there :bighug:

The importance of the PEG tube and the formula are to keep your nutrition level and weight stable - but closer to the end of treatment, while I'm waiting for my mouth and buds to come back online, I  plan on losing a bit of weight (no more than 5 pounds) because I have no idea what's going to happen when I can start choking down Pu Pu Platters, chicken wings and blue cheese, BACON, rare red meat, chocolate, and all manner of other things that aren't exactly healthy or good for me (but I don't CARE).
I think this is extremely good for you, because looking forward to something gives you lots of positive energy, and after all those tube-veggies, you are owed at least a years supply of whatever you want to eat, and if it is chocolate sundays for breakfast, lunch and dinner  ;)
« Last Edit: February 15, 2020, 09:05:07 AM by practical »
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Amadahy

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Re: Longish non PD update about stuff and things
« Reply #3 on: February 15, 2020, 09:08:40 AM »
Thanks for the update, WI!!  Iím very thankful for your progress and prognosis!

Cats are king here, too, and Iím sorry about the crossing over of yours. They have their own way of doing things, for sure, and Iím sure theyíre cheering you on from the catnippy celestial realms! 😻

Healthcare in the US leaves lots to be desired and Iím thankful you have supplemental woo woo ways and means! (Not making fun - I am very woo woo, soul sister.) May your continued healing be smooth and speedy and may your first meal be wildly divine!

Much love 💕 💕💕
« Last Edit: February 15, 2020, 09:28:18 AM by Amadahy »
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SunnyMeadow

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Re: Longish non PD update about stuff and things
« Reply #4 on: February 15, 2020, 10:20:12 AM »
I'm sorry about the passing of your two sweet kitties. I can tell you're a loving and deeply caring pet parent. You're all lucky to have each other.

Thanks for the update on your cancer treatment. Sounds tough to deal with but knowing your strong will and strength, you've got this! I appreciate you explaining the real truth of what it feels like. And tube veggies,  :o .... hopefully that'll be done asap and you can start enjoying all the food you've missed.

I always think of you when I visit OOTF and appreciate your update!  :hug:

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Bloomie

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Re: Longish non PD update about stuff and things
« Reply #5 on: February 15, 2020, 10:34:36 AM »
WI - Thankful for this update. Been thinking of you and wondering how your treatments are treating you. Seems like you are in the home stretch and looking forward to reintroducing yummy foods and your body returning to full health.  Chocolate.... YES!!!

A sad loss of your two fur babies. I am sorry. :hug:

What a close call with your DH's 'bump'. Good to have that removed and the follow up in place to watch that area.

Count me another one who is glad you are progressing so well and expecting a full recovery. Healing, strength, blessings and care sent your way!
"You can understand and have compassion for someone and still not want a relationship with them."
Amanda E. White, LPC @therapyforwomen

Bloomie 🌸

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Spirit in the sky

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Re: Longish non PD update about stuff and things
« Reply #6 on: February 15, 2020, 11:15:15 AM »
Woman Interrupted

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Because I know you love an emoji  :aaauuugh:

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lkdrymom

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Re: Longish non PD update about stuff and things
« Reply #7 on: February 15, 2020, 12:29:02 PM »
I am so sorry you are going through all of this.  And then to lose two of your babies during all of this.  I don't know how you are managing.   I lost 4 cats in 2018...one to old age, one to an illness...then we adopted two that ended up having FIP.  I never want to go through at again. Our 'herd' is back up to 5 again.  We adopted three kittens from a litter last year and out daughter moved out taking her cat.  The babies just turned 1 this week. They make the house a home.

Doesn't it figure, you are going through all of this and you get a Ray update.

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appaloosa

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Re: Longish non PD update about stuff and things
« Reply #8 on: February 15, 2020, 01:43:41 PM »
I'm glad you are doing well, and nearing the end of chemo, but so sorry about your kitties. That must have been a very tough stretch. I have 3 cats (down from a high of 12 I think, at one point--kids kept giving me theirs) and 3 dogs, and it's never easy, despite the many many euthanasias and deaths over the decades. Happy your hubs got that mole off too! xoxox

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sarandro

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Re: Longish non PD update about stuff and things
« Reply #9 on: February 15, 2020, 04:55:56 PM »
Hi, WI...
It's good to hear you're healing, I'm sending you a hug through the ether XXX
I'm so sorry about your beautiful cats, you've been through a hell of a lot of challenging stuff....DH as well.

Hopefully it won't be too long before you can eat what you like, without any pain.
Wishing you a trouble free recovery and lots of love

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Riggo199

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Re: Longish non PD update about stuff and things
« Reply #10 on: February 21, 2020, 07:48:21 PM »
Just putting a shout out to let you know I am thinking about you and wishing you a lot of love!  I rarely post, put do read this site constantly.  You have helped so many people!!

You got this!!  We are rooting for you!!   Whoop, whoop!!  :)

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WomanInterrupted

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Re: Longish non PD update about stuff and things
« Reply #11 on: February 22, 2020, 02:20:13 AM »
Thanks everybody!   :yourock: :grouphug:

Six weeks down and one more to go!!!!!!!!!   :yahoo:

But this was the *worst* week - all that radiation I've had?  Well, my neck is now red, peeling copiously, hurts like hell, and is quite swollen.  I was advised to put a cool compress on it, but only if it's in a plastic bag and the bag has been cleaned with rubbing alcohol, so I don't get any kind of weird skin infections.   :aaauuugh:

I also have to keep my neck lubed with Aquaphor (or the Amazon equivalent of Solimo, at 1/4 the cost), lidocaine lotion for pain, and I have Silvadene cream for anything that I even suspect is becoming infected.

I took the compress thing one step further and took a bag of frozen green beans, put it in a gallon freezer bag, cleaned that off with rubbing alcohol, then tied the thing under my chin and up against my neck with one of those useless scarves unBPD Didi used to crochet, thinking she was doing some kind service for the world.

She gave me a bunch and I didn't dare refuse them, even though they're ugly, not long enough, and being crocheted, not warm - but they DO hold my beans in place, and I'll hopefully be able to keep all the swelling at bay during the week.  ;D

Oh, Didi would be SO pissed to know that she's being helpful in any way.  :banaaana:

Surprisingly, my throat really isn't that sore BUT  I can only swallow liquid reliably - the inside of my mouth is too swollen for food, and I'm hoping that rectifies itself - all of this does! - pretty quickly after the 28th because I would love to eat something and be able to taste it.  :yes:

I'm typically not an eat-out person, but I've been making lists of not-exactly the best food for me, but stuff I want - like pho from the restaurant I discovered is only a few blocks away and gets great reviews - and they have soup  dumplings, too!

When I have taste buds, it is ON!      This is me vs ALL the food! ---->   :hoovering:

My DH still has to eat, and a part of me did think of telling him to fend for himself, but I really  *love* cooking - it's been one of those things in my life that's always been there for me.    When things turn to crap, I can cook my blues away and think - or not think - as much as I want or need to.  :)

This is no different - it's just that I have no taste buds and have been relying on memory.  Occasionally, I'll ask DH if I can borrow his, since he's the one I'm making meals for.  :kisscheek:

The worst "criticism" I've gotten is, "Needs more salt..." - which is the *best* possible answer.  :thumbup:

My spicing is on point because I know what flavors go together and can accurately guestimate how much of this, that or the other go into a dish of X size, which surprised the hell out of me!  ;D

I guess I do know what I'm doing, after all!   :phoot:

Just one more week to go, and this will be behind me - and I feel a lot better knowing my weird compress system actually works in holding my frozen veggies to the worst of the burnt, swollen areas.

I love creative solutions to weird problems - and I love knowing unBPD Didi would be just about beside herself, screaming that's NOT what a scarf is for - especially one of HER scarves, which should be set on a plinth  and gazed upon in breathless wonder.   :roll:

Yeah - that's not gonna happen!   :evil2:

But what WILL happen is I'll put this behind me and life will go on.   One day, this will all be in the land of, "Well, that happened..."

I haven't been shot out of the wormhole back into my own life yet - but that day is getting closer and closer.

 8-)

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Spring Butterfly

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Re: Longish non PD update about stuff and things
« Reply #12 on: February 22, 2020, 10:17:46 AM »
So glad your treatment is nearly over and so so very sorry about losing your fur babies. Surely a food party is in order at the end! The whole thing sounds miserable and glad you're holding up well with a good attitude. Sending thoughts for peace your way.
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SunnyMeadow

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Re: Longish non PD update about stuff and things
« Reply #13 on: February 22, 2020, 11:15:06 AM »
One more week!!!  :banana:

You have a lot of friends here doing the one week countdown.  :yes:

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looloo

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Re: Longish non PD update about stuff and things
« Reply #14 on: February 22, 2020, 11:52:54 AM »
So happy youíre almost there!  Btw, have you heard that song, ďAlmost ThereĒ from the Disney movie The Princess and the Frog? I thought of it after reading your post.   ;D

Iím laughing about the new use for the scarf!  What a great solution!  :applause:

Hope you get to enjoy your first yummy 😋 meal soon!
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