Winkyduck Update

winkyduck

TYVM Morgan William!!!
#1
I spoke to JK today and am now doing this. I have no idea if/when I will be back here but I wanted to post this:


Hello All.
I juuuuuuuuuuuuust got home from the Hospital. I am posting this before I go back to bed.
I am on a BRUTAL 24-WEEK stage to beat this.
I go in for about 5 days and get blasted 24-7 non-stop with bags of Chemo. The last 3-ish days all I have done is sleep, which is not good. I have eaten very little - only enough to be able to take medications requiring food to be eaten with it. I am awake a few hours a day during which time I answer text messages (easiest way to communicate with me since what little energy I have is not wasted talking.
I am now going to be home for 3 weeks until I go back for my 2nd run of Chemo blast.
I know Week #1 is the worst because it is a 100% different way of living life than I have at any time in my life before. Right now the desire to take a sleeping pill that will cause me to go to sleep for the rest of my life is rather appealing. I know what I just said, too. I also know from speaking to all medical professionals this is nothing new and that eventually this will go away.
I have too much to live for. I have a family that is far better than I deserve. I have friends who are far better than I deserve.I know what doing what I think about doing would crush people and for that reason I will not do it.
The one thing that I could really use is an outflowing of support. NOW! It would mean more than any of you will ever know to receive as many cards as you can send......knowing I will not be able to individually acknowledge each and every card you send but deep down it would mean the world to me and help me get thru something I am still not sure WTF is going on and so many more questions I am unable to answer: The mailing address to send me any correspondence is: Better Value/18030 Brookhurst #583/Fountain Valley/CA/92708.........USA
 

John Kelly

Born Gambler
Staff member
#11
I spoke to JK today and am now doing this. I have no idea if/when I will be back here but I wanted to post this:


Hello All.
I juuuuuuuuuuuuust got home from the Hospital. I am posting this before I go back to bed.
I am on a BRUTAL 24-WEEK stage to beat this.
I go in for about 5 days and get blasted 24-7 non-stop with bags of Chemo. The last 3-ish days all I have done is sleep, which is not good. I have eaten very little - only enough to be able to take medications requiring food to be eaten with it. I am awake a few hours a day during which time I answer text messages (easiest way to communicate with me since what little energy I have is not wasted talking.
I am now going to be home for 3 weeks until I go back for my 2nd run of Chemo blast.
I know Week #1 is the worst because it is a 100% different way of living life than I have at any time in my life before. Right now the desire to take a sleeping pill that will cause me to go to sleep for the rest of my life is rather appealing. I know what I just said, too. I also know from speaking to all medical professionals this is nothing new and that eventually this will go away.
I have too much to live for. I have a family that is far better than I deserve. I have friends who are far better than I deserve.I know what doing what I think about doing would crush people and for that reason I will not do it.
The one thing that I could really use is an outflowing of support. NOW! It would mean more than any of you will ever know to receive as many cards as you can send......knowing I will not be able to individually acknowledge each and every card you send but deep down it would mean the world to me and help me get thru something I am still not sure WTF is going on and so many more questions I am unable to answer: The mailing address to send me any correspondence is: Better Value/18030 Brookhurst #583/Fountain Valley/CA/92708.........USA

I'll drop a note in the mail tomorrow, Wink.

Be strong.

#WinkyduckStrong
 
#13
So Jesus answered and said to them, “Have faith in God. 23 For assuredly, I say to you, whoever says to this mountain, ‘Be removed and be cast into the sea,’ and does not doubt in his heart, but believes that those things he says will be done, he will have whatever he says. 24 Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.
Forgiveness and Prayer
25 “And whenever you stand praying, if you have anything against anyone, forgive him, that your Father in heaven may also forgive you your trespasses. 26 [a]But if you do not forgive, neither will your Father in heaven forgive your
 

Bucky

EOG Dedicated
#14
Well said Mr. Railbird! My support wishes as well. ChiTownJoe's idea of listening to an inspirational speech is a great idea.

But, I am worried about your nutrition. I know nutrisystem is expensive, however, it is quick and delivered right to your door. Maybe, it is a non issue if you have family and friends dropping things off to microwave. Stay hydrated - keep your strength up with food.

#WinkyduckStrong
 
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bomzee

EOG Dedicated
#15
The courage and strength and attitude you need will come to you and overwhelm you with the determination to really heal.Your Loving Family will solidify your determination. and strength. You will win for your family and for yourself and that is truly your only choice. My best wishes to you while you are going through the awful pain that will enable you to be healthy again.
#WinkyduckStrong
 

winkyduck

TYVM Morgan William!!!
#16
I am home. I am up from my afternoon nap. For now. Feeling a tad better now but still very tired. Using crutches to walk is still how I get around. I am exhausted all of the time. I need to build up energy for when I go back for another week of Chemo sometime in the next week, or so.

I am only getting thru this with help from my family who are too amazing for words
 

winkyduck

TYVM Morgan William!!!
#23
Nothing much to update

Week 2 of "rest" after Chemo. Not as tired with the Chemo wearing off some. The plan is for a week of Chemo then 3 weeks off then back for more Chemo. But when I go back is 100% dependent on my Blood Cell count so the "break" could be more or less than 3 weeks. Just a hunch.....won't shock me if I go back next week, a week earlier. I'll know more Wednesday when I see my doc.

The one update that is something massive: Towards the end of 2018 I looked into getting a new healthcare policy to save some money. I was unable to do so.

BEST (NON) MOVE I EVER MADE!

My coverage is expensive BUT it covers EVERYTHING with a minimum out of pocket expense. It is nice to know that for the rest of 2019 whatever I get done will be FREE......as long as I use an "In Network" doctor or facility. I cannot put into words what a massive relief this is.

Last time at the Hospital I would look at the massive bag of Chemo and see it dripping the fluids. Every time it dripped I would say "FUCK YOU" scared at how much money that drip was costing me and my family. Knowing that is not the case has made me more ecstatic than words can describe.

I thank all who have text or sent me a card. It is more appreciated than you know. It might not mean much to you BUT IT MEANS EVERYTHING TO ME

I AM TRULY SCARED!

I have been told I got the "best" form of Cancer to beat. Great. But right now I am so scared of everything

I also know that when all is said and done I face a good 2-3 months of rehab and PT. ALL of the muscle I had before - GONE! My leg looks like Olive Oyl. It is sad to look at but I am with it the way it is because I know it is the way it is because of the Chemo - which is helping save my life. I walk with crutches and need help doing that. Just getting out of bed takes 15+ minutes.

I feel like such a burden to my family. Because I am. If I did not have any family and it was just me I would have already ended my life since there is no way I can get by this on my own.

I need help bathing.
I need help eating - as far as food has to be made for me and brought to me at the table.
I need help getting into bed at night.
I need help having my "pee urinal" emptied once I use it during the night so I can stay in bed

I have to eat bland food because my stomach cannot handle anything else. Might be why I have lost at least 20 pounds and why my family is trying as hard as they can to make sure my weight doesn't go from 190-195 to any lower than the 170-ish it is now. I am going to start lifting 5 pound weights so I can do something with my arms. My brother got me an Annual Pass to Knott's for Xmas. I cannot use it because now I can't go and by the time I am able to walk again it might be 2020.

I have to make sure foods I eat are low in sugar. You have no idea how badly I want some of the "Cookie Dough" ice cream in the freezer- that I bought just before my diagnosis. I sooooo wanna go to the local Wing Stop on Monday/Tuesday when boneless "wings" are 60-cents and I can load up on Hawaiian ones. I soooooooooo wanna go to Blaze Pizza and have one. Or some rib place and devour many. Or......................... I know I have to suffer now but when all is said and done.......................

TYVM to all who have passed along their best wishes. I need it. Please keep them coming.
 

winkyduck

TYVM Morgan William!!!
#31
Feeling decent today. Going to see the Doc on Wednesday and I have a hunch my "counts" will OK me coming back for Round 2 earlier than we planned on. I can only hope so because knowing I need 6 Chemo stays at Hoag, getting the next one out of the way as soon as I can should mean one step closer to the successful end of this entire process.

I am eating a tad more than usual and that is great.
 

jimmythegreek

The opening odds start here
#32
Eating a little more is a positive sign, and hopefully will build up your strength. One step at a time. Difficult not to be scared but the road shortens with each day you get by. Stay strong and God bless.
 

winkyduck

TYVM Morgan William!!!
#33
Eating a little more is a positive sign, and hopefully will build up your strength. One step at a time. Difficult not to be scared but the road shortens with each day you get by. Stay strong and God bless.
I know things might radically change after the next 2 Chemo treatments. While they will only be 2/6 and 3/6 the feeling we all have is that the next 2 should have a massive impact because they will help shrink the size of the issue thus reducing the pain in that area as well as how many pain pills I have to take every day.

RIGHT NOW I am a full blown: Opioid addict

No way to phrase it any other way. The pills I take are ones I MUST take to alleviate the pain. The thought/hope is that as the mass is reduced so can the number of pills I have to take. I WILL not be an Opioid addict by the time all of this is done. It might be very difficult but when I am done I will be back to taking only OTC Allergy medicine and an occasional Tylenol/Advil.
 

winkyduck

TYVM Morgan William!!!
#35
That chemo is bad shit. Takes out the cancer but still kills you in the process.
It takes out the Cancer. So that is good - as you said. But it just zaps me of any desire to do anything but sleep. I know the 5-ish days I will be at Hoag once the Chemo starts coming into my body my desire to do anything but sleep will be non-existent. I was done with Chemo on my last visit around 11:59P on Sat Feb 16. It took me about a week to be somewhat ack to normal and have enough Chemo flushed out of my body to resume a more normal lifestyle than sleeping.

Chemo is brutal but it does what it has to do
 
#38
Winky, don't worry about being an "opiod addict" right now, you got bigger fish to fry.

At this point it's expected that someone at your level of pain is going to be addicted.

You couldn't bear it otherwise.

One fight at a time please.
 

winkyduck

TYVM Morgan William!!!
#40
It's so powerful that a caregiver is not supposed to touch the pills without medical gloves. That is powerful shit.
First off - NO.....radiation. Doc says Chemo is the only option (too long to explain why)

The point about pills/gloves is DEAD ON! Whenever I am given pills the nurse breaks open the pills and places them into a small cup to hand to me all at once.

Patrick: I am not really thaaaaaaaaaat worried about Opioid dependency. Like you and others have said, I have far more important things to worry about than that.

I am soooooo appreciative of all of the great messages and thoughts extended my way
 
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