Chef Trek

thegirlfriend

Chefdaddy said:

What's wrong with those Dutch lol
Hey kiddo,

Sicilian? Molto buono! I hope you have some good recipes I can borrow. lol

Alright, you have me on some of those items, like whoopie pies, shoo-fly pie, scrapple, rivels??(what the heck is that?) and pot pie with noodles?? I have no idea what that is. lol


Your very hungry friend

Mike

Scrapple
my boyfriend is from Buffalo, NY and so he is very familiar with many of those foods.
He told me what scrapple was just recently!! He loves to cook and has tons of cook books as well.

Kathy

thegirlfriend

Chefdaddy said:

Italian eatery!
Hi Sweets,

Well, it's obvious we need to open an Italian eatery! No Scrapple though! lol

I too had hundreds of cookbooks that were lost between divorce and moving. One that I especially miss was from the early 1800's and was written by a President's White House Chef.

I know what you mean about not being able to eat, but I cook meals for my kids and they are rather spoiled with my cooking. My brother, their uncle, cooks gourmet as well and has been doing it for nice eateries for many years.

Before becoming ill, I installed cooking and baking equipment for restaurants and bakeries. We would have to open one on the West coast though, I hate the cold! lol

Or, we could open one in Florida so we could cook up all that fish that John and Hondo are going to catch.

Thanks for the cooking lesson, I need more for those "foreign" foods. lol

Scrapple, what were they thinking? Some things just need to be tossed and not cooked.


Your friend

Mike

Yes in Florida!!
Mike,

my boyfriend and I are in Florida, we could come help eat when he actually starts eating!!!!
Mike, would you happen to remember any more on the cookbook name from the 1800s?

as far as scrapple, i guess that hot dogs are alot prettier considering whats in those!!
same as spam!! lol!

Kathy

thegirlfriend

cwcad said:

Beard no more
In a positive way of thinking the treatments burned my neck so completely that I now only have a beard above my jaw line. The heavy coarse hair on my neck is completely gone. Here is the positive thought. Prior to treatment I needed to use a fresh blade each time I shaved. Now a razor can last up to seven months. That is a considerable saving in my razor blade budget and I do not miss the neck hair one bit.

The neck is the only place that I suffered any hair loss. I didn't have much on my head to begin with since God only made so many good heads and the rest he put hair on them. LOL!

hair regrowth
you should see my boyfriend Pauls hair. His hair on his head is as fine and soft as it always was, but a little grayer. but his eyebrows are very dark and bushier, and his mustache is the same dark color, but the rest of his beard comes in gray!! how weird is that???

Kathy

Hondo

Daddy Mike
Its been a few days since you posted, hope you are doing OK, I know the treatment is getting really hard about now but everyday brings you close to the finish line. Take care my friend you are in my thought and prayers through out the day.

Chefdaddy

Hondo said:

Daddy Mike
Its been a few days since you posted, hope you are doing OK, I know the treatment is getting really hard about now but everyday brings you close to the finish line. Take care my friend you are in my thought and prayers through out the day.

Sorry
Hondo and everyone,

Sorry I haven't posted, not in very good shape.

It turns out that it was not bone chips trying to come through my gums, it is exposed jaw bone in several places in mouth. They are planning to do surgery but I have to wait until I'm done with radiation on the 29th and a week after that.The Fentynal isn't working.

They stopped all chemo now due to the mouth problems.

I'm extremely weak and fatigued, they finally found a canned food that doesn't have Iodine in it but I won't receive it for 10 days.

I need to rest again so I will try to check in a little later.

Your friend,

Mike

Pam M

Chefdaddy said:

Sorry
Hondo and everyone,

Sorry I haven't posted, not in very good shape.

It turns out that it was not bone chips trying to come through my gums, it is exposed jaw bone in several places in mouth. They are planning to do surgery but I have to wait until I'm done with radiation on the 29th and a week after that.The Fentynal isn't working.

They stopped all chemo now due to the mouth problems.

I'm extremely weak and fatigued, they finally found a canned food that doesn't have Iodine in it but I won't receive it for 10 days.

I need to rest again so I will try to check in a little later.

Your friend,

Mike

Thank Goodness
Mike,

So glad they've finally come up with a safer canned food for you. I don't want to think about how much more difficult this journey would be for me without the canned nutrition going in my tube right now. Having to wait another 10 days seems crazy, but at least you know it's coming.

Hate that you've met with yet another obstacle. Mike, I wish I could send you strength through the internet - you've showed us all here so much about strength and perseverance - wish there were a way for us to give you a physical boost. I know it's hard, and I've only experienced a fraction of the trials you have.

Keep knowing that there are a lot of us pulling for you and those kids. Like another survivor says, "When you're walking through hell, keep moving".

- Pam

Hondo

Chefdaddy said:

Sorry
Hondo and everyone,

Sorry I haven't posted, not in very good shape.

It turns out that it was not bone chips trying to come through my gums, it is exposed jaw bone in several places in mouth. They are planning to do surgery but I have to wait until I'm done with radiation on the 29th and a week after that.The Fentynal isn't working.

They stopped all chemo now due to the mouth problems.

I'm extremely weak and fatigued, they finally found a canned food that doesn't have Iodine in it but I won't receive it for 10 days.

I need to rest again so I will try to check in a little later.

Your friend,

Mike

daddy Mike


Sorry to hear about another problem that you don’t need, but I am glad to hear from you my friend. The 29th will be a celebration day in my book.

sweetblood22

Hondo said:

daddy Mike


Sorry to hear about another problem that you don’t need, but I am glad to hear from you my friend. The 29th will be a celebration day in my book.

i have had problems trying to bring up this site
mike, i am so sorry that you are in such pain. i am worried since you won't be getting that food for ten days. can you use resource boost breeze? it has sugar tho, i know some people don't do sugar, but i do not see iodine listed? it was on sale at walgreens, i ordered some two days ago. i know that at the height of my pain i really felt like that fentanyl was not helping. know that i am praying for you and the kids daily. i just want this to be over for you. sending you love and light. may you feel His presence and may God keep you in His tender care.

d

Kent Cass

sweetblood22 said:

i have had problems trying to bring up this site
mike, i am so sorry that you are in such pain. i am worried since you won't be getting that food for ten days. can you use resource boost breeze? it has sugar tho, i know some people don't do sugar, but i do not see iodine listed? it was on sale at walgreens, i ordered some two days ago. i know that at the height of my pain i really felt like that fentanyl was not helping. know that i am praying for you and the kids daily. i just want this to be over for you. sending you love and light. may you feel His presence and may God keep you in His tender care.

d

Mike
Sorry to hear about the exposed skeletal in your mouth. My gum tissue, also, took a major loss- but not as extreme as your's. My larger concern was the bottom of my mouth, behind my lower-teeth. I can see the white of bone all along the left side to just behind my lower-front right-side teeth, and did make an issue about it with all my Drs. It was my Dentist(!!!) who spelled-it-out for me. Mike, look for a PM from me.

You, Mike, are experiencing something we have all been at risk for, in regards to gum tissue, loss, and the going forward. I state, again, that this is what my experience tells me: it is the combo of chemo where the rad is done that takes one to the physical extreme; and the mouth was, in my case, most vulnerable to the negative, when the rads were done while I was getting accelerated Cisplatin and FU5 via pumps I carried for 96-hours. Just getting the rads was a minor negative- my mouth recovered while getting only the rads in weeks #7 and #8. And with the particulars of what I experienced, I do wonder if the Med/Cancer community isn't still trying to get a handle on the gum tissue thing. I expressed large concerns over this issue in prior threads, and the responses did leave me wondering if such is 1)something we're "not supposed-to talk about," or 2)something that is only experienced to the problematic level by few of us.

Again, Mike- look for a PM from me. You, my friend, are in all of our Prayers. Know it, and...

Believe.

kcass

sweetblood22

sweetblood22 said:

i have had problems trying to bring up this site
mike, i am so sorry that you are in such pain. i am worried since you won't be getting that food for ten days. can you use resource boost breeze? it has sugar tho, i know some people don't do sugar, but i do not see iodine listed? it was on sale at walgreens, i ordered some two days ago. i know that at the height of my pain i really felt like that fentanyl was not helping. know that i am praying for you and the kids daily. i just want this to be over for you. sending you love and light. may you feel His presence and may God keep you in His tender care.

d

correction
for some reason i do not have the option to edit my last post. the boost breeze DOES have iodine in it. i stand corrected. sorry.

Chefdaddy

sweetblood22 said:

correction
for some reason i do not have the option to edit my last post. the boost breeze DOES have iodine in it. i stand corrected. sorry.

Hi my friends,
Thank you all
Hi my friends,

Thank you all for your prayers and encouragement. It does help.

Good news! We met with Make-A-Wish staff and we are going to Disneyland California. We were trying to go to Disney World, but my son wouldn't be able to handle that many hours in a seat while in flight. His spine has to many problems. They are either going to rent a small RV and we drive down, in this way he can lie down when he needs to, or, we might be taking the train with a private compartment with a bed. He and my daughter are very excited about going. We will probably be going in September after kids have gone back to school so there won't be quite as long lines and the temperature isn't quite as hot.

I did find out something pretty cool, Make-A-Wish has a private room with a bed at Disneyland for their kids to lie down if they become fatigued in stead of having to go all the way back to their hotel room.

Has anyone any input on this? I am concerned about the condition of my lower lip and the tip of my tongue. My bottom lip is burned so much that it is an open sore, bleeding all the time and swollen large. The tip of my tongue hurts constantly and burned as well. It feels like I have it sitting in a boiling pot of water all the time. My question is: Do they have me lined up right in the radiation machine? There is at least 3/4 inch slop from where my chin sits and the top of my head is to touch the mask. It depends on how they position me as to whether or not I will be touching the top or the bottom of the mask. This seems wrong to me.

I know they go by the tattoo mark on my chest, but why the lip and tip of tongue burns?

It makes talking very difficult.

Sweets, thank you about the Boost, I had already found out the hard way that it has Iodine.

I have to run off for more radiation, thank you everyone for your prayers and encouragement.

Your friend

Mike

Skiffin16

Chefdaddy said:

Hi my friends,
Thank you all
Hi my friends,

Thank you all for your prayers and encouragement. It does help.

Good news! We met with Make-A-Wish staff and we are going to Disneyland California. We were trying to go to Disney World, but my son wouldn't be able to handle that many hours in a seat while in flight. His spine has to many problems. They are either going to rent a small RV and we drive down, in this way he can lie down when he needs to, or, we might be taking the train with a private compartment with a bed. He and my daughter are very excited about going. We will probably be going in September after kids have gone back to school so there won't be quite as long lines and the temperature isn't quite as hot.

I did find out something pretty cool, Make-A-Wish has a private room with a bed at Disneyland for their kids to lie down if they become fatigued in stead of having to go all the way back to their hotel room.

Has anyone any input on this? I am concerned about the condition of my lower lip and the tip of my tongue. My bottom lip is burned so much that it is an open sore, bleeding all the time and swollen large. The tip of my tongue hurts constantly and burned as well. It feels like I have it sitting in a boiling pot of water all the time. My question is: Do they have me lined up right in the radiation machine? There is at least 3/4 inch slop from where my chin sits and the top of my head is to touch the mask. It depends on how they position me as to whether or not I will be touching the top or the bottom of the mask. This seems wrong to me.

I know they go by the tattoo mark on my chest, but why the lip and tip of tongue burns?

It makes talking very difficult.

Sweets, thank you about the Boost, I had already found out the hard way that it has Iodine.

I have to run off for more radiation, thank you everyone for your prayers and encouragement.

Your friend

Mike

Mask
Hi Mike, glad you got the Disney trip squared away. Hopefully you and the kids can enjoy a great day....

As for the mask, mine fit so tight that I usually had diamond welts across my forehaead everyday after treatment. I could barely open my eyes, my nose was squished and I could only open my mouth with clincehd lips...so in other words, my mask was extremely tight fit.

They didn't use a tatoo for mine. I know everyday when the put the mask on they had some kind of an alignment going on, reading numbers to each other. If it was off more than a few milimeters. I'd have to get a new mask made, which they did twice I believe.

So if your is that lose, I'd question that it's hitting the exact same spot with radiation everytime.

They also did an X-Ray every Monday after I was bolted in to make sure that I hadn't lost too much weight and the mask was too lose also.

God Bless Brother.
John

Fire34

Skiffin16 said:

Mask
Hi Mike, glad you got the Disney trip squared away. Hopefully you and the kids can enjoy a great day....

As for the mask, mine fit so tight that I usually had diamond welts across my forehaead everyday after treatment. I could barely open my eyes, my nose was squished and I could only open my mouth with clincehd lips...so in other words, my mask was extremely tight fit.

They didn't use a tatoo for mine. I know everyday when the put the mask on they had some kind of an alignment going on, reading numbers to each other. If it was off more than a few milimeters. I'd have to get a new mask made, which they did twice I believe.

So if your is that lose, I'd question that it's hitting the exact same spot with radiation everytime.

They also did an X-Ray every Monday after I was bolted in to make sure that I hadn't lost too much weight and the mask was too lose also.

God Bless Brother.
John

Sorry about the complications
Mike
Sorry to hear about the extra troulble you are having. I wish you well. As John said my mask als was extremely tight with all the troulbe he mentioned. I was also aligned every Monday and if the rad/onc didnt like what he saw I was aligned again. I did have a new mask made after the 3rd week due to weight loss. If you have any movement just as John said I would get it refit. Best Wishes
Dave

Kent Cass

Fire34 said:

Sorry about the complications
Mike
Sorry to hear about the extra troulble you are having. I wish you well. As John said my mask als was extremely tight with all the troulbe he mentioned. I was also aligned every Monday and if the rad/onc didnt like what he saw I was aligned again. I did have a new mask made after the 3rd week due to weight loss. If you have any movement just as John said I would get it refit. Best Wishes
Dave

Lip, etc.
Mike- might be typical. My upper-lip only had one minor sore on it, but the lower lip developed a number of sores. Bleeding was not a problem, though. Rad Dr. said to just put the Aquaphor ointment on the lip sores. Swallowing this ointment was a concern to me, but by then I wasn't exactly ingesting anything by mouth other than H2O and chopped-up pills, and the liquid Morph.

As for the tongue- unfortunately, yes. I had flesh-colored stripes running lengthwise down my tongue, and my Onco called it "scalding." Most unpleasant, of course. The entire mouth area is in harm's way, and I would urge you to make sure your Drs. know about the problem, and that they provide relief.

As for the mask- I had a goatee when I was fitted for mine, and after I shaved it off a little extra room mighta resulted. Because of prior neck trauma, I had them cut away a little below the chin to help in swallowing during the rads. And, yes, I could move a little within the mask, and would before the zapping actually started the 20-place sessions, but once those sessions started I didn't really have any problems with movement. EVERYONE hates the mask, Mike. As I've noted before, I found that holding my mouth in an overbite position, with lips a little open, allowed me to breathe thru both my nose and mouth during the sessions, and made it a lot easier to get thru them. AND, I would typically take a 1/2-tab of Xanax about 1/2-hour before every Rad session, and that included the times of Morph after I got home from the Rad.

We're all Praying for you, Mike.

Believe.

kcass

Chefdaddy

Kent Cass said:

Lip, etc.
Mike- might be typical. My upper-lip only had one minor sore on it, but the lower lip developed a number of sores. Bleeding was not a problem, though. Rad Dr. said to just put the Aquaphor ointment on the lip sores. Swallowing this ointment was a concern to me, but by then I wasn't exactly ingesting anything by mouth other than H2O and chopped-up pills, and the liquid Morph.

As for the tongue- unfortunately, yes. I had flesh-colored stripes running lengthwise down my tongue, and my Onco called it "scalding." Most unpleasant, of course. The entire mouth area is in harm's way, and I would urge you to make sure your Drs. know about the problem, and that they provide relief.

As for the mask- I had a goatee when I was fitted for mine, and after I shaved it off a little extra room mighta resulted. Because of prior neck trauma, I had them cut away a little below the chin to help in swallowing during the rads. And, yes, I could move a little within the mask, and would before the zapping actually started the 20-place sessions, but once those sessions started I didn't really have any problems with movement. EVERYONE hates the mask, Mike. As I've noted before, I found that holding my mouth in an overbite position, with lips a little open, allowed me to breathe thru both my nose and mouth during the sessions, and made it a lot easier to get thru them. AND, I would typically take a 1/2-tab of Xanax about 1/2-hour before every Rad session, and that included the times of Morph after I got home from the Rad.

We're all Praying for you, Mike.

Believe.

kcass

Rough time
Hi Kent,

I had a rough time during radiation on Friday, I started choking and coughing on stomach acid as it went into my lungs. That broke a bunch of mucous loose in my throat and I was in trouble as I couldn't breathe and was still coughing. The technicians finally came in to see if I was alright and by that time I had coughed up something in the mask and could breathe again. I told them I needed to spit and clear my throat but they said I was half way through and they would have to restart the first part of alignment again if I got up. It was obvious they didn't want to do anything over so I went along with it but I shouldn't have as I had more difficulty towards the end.

My upper lip is almost as bad as my lower lip. The back of my neck is very burned and the skin is very dark, almost gray. It is covered with sores and scabs.

My tongue is very painful now, this morning when I woke up it was stuck to my lip and it was not pleasant getting them apart. I use the Lidocaine all through the day to try to ease the pain for a few minutes. I had to cut back on the Fentynal as it was making my to unstable to walk without the fear of falling down.


At what point do they bring in the baste? lol


I don't get any anxiety from having the mask on or being confined unless I can't breathe, either from coughing or from choking on the mucous. I usually fall asleep during the last half of the session.


I asked the technician about all the slop in the mask and he told me that the only place we don't lose weight is the top of the head. So, that's why they want my head to the top. I told him that once he lines me up and the top of my head is touching the top then I just slip back down to where my chin is touching, without my moving, it just happens. He said thats why they do the scan before they start so they can make the necessary adjustments.
I hope their "adjustments" are correct, my tongue and lips don't think they are! I told him that if I had something to put my feet against so I could keep myself at the top it would be better, but he told me they don't do that and he wants me to be relaxed during the procedure.

Trying to suck in air while you're turning blue is extremely relaxing, just as you pass out! lol


Thank you for the input Kent, and the prayers.

Your friend

Mike

Chefdaddy

Chefdaddy said:

Rough time
Hi Kent,

I had a rough time during radiation on Friday, I started choking and coughing on stomach acid as it went into my lungs. That broke a bunch of mucous loose in my throat and I was in trouble as I couldn't breathe and was still coughing. The technicians finally came in to see if I was alright and by that time I had coughed up something in the mask and could breathe again. I told them I needed to spit and clear my throat but they said I was half way through and they would have to restart the first part of alignment again if I got up. It was obvious they didn't want to do anything over so I went along with it but I shouldn't have as I had more difficulty towards the end.

My upper lip is almost as bad as my lower lip. The back of my neck is very burned and the skin is very dark, almost gray. It is covered with sores and scabs.

My tongue is very painful now, this morning when I woke up it was stuck to my lip and it was not pleasant getting them apart. I use the Lidocaine all through the day to try to ease the pain for a few minutes. I had to cut back on the Fentynal as it was making my to unstable to walk without the fear of falling down.


At what point do they bring in the baste? lol


I don't get any anxiety from having the mask on or being confined unless I can't breathe, either from coughing or from choking on the mucous. I usually fall asleep during the last half of the session.


I asked the technician about all the slop in the mask and he told me that the only place we don't lose weight is the top of the head. So, that's why they want my head to the top. I told him that once he lines me up and the top of my head is touching the top then I just slip back down to where my chin is touching, without my moving, it just happens. He said thats why they do the scan before they start so they can make the necessary adjustments.
I hope their "adjustments" are correct, my tongue and lips don't think they are! I told him that if I had something to put my feet against so I could keep myself at the top it would be better, but he told me they don't do that and he wants me to be relaxed during the procedure.

Trying to suck in air while you're turning blue is extremely relaxing, just as you pass out! lol


Thank you for the input Kent, and the prayers.

Your friend

Mike

Hi John and Dave.
I didn't
Hi John and Dave.

I didn't mean to ignore you guys, I'm not running on all cylinders right now.

I need to lie down so I will continue this later.

Your friend

Mike

Skiffin16

Chefdaddy said:

Hi John and Dave.
I didn't
Hi John and Dave.

I didn't mean to ignore you guys, I'm not running on all cylinders right now.

I need to lie down so I will continue this later.

Your friend

Mike

No Biggie
Glad you are still kickin...it's hard, but you've already gone through a lot.

You mentioned pushing down on something. When I had my treatments they had my push down on this board like contraptioon that had straps like a jump rope on it. I had to pull up on the straps and push with my feet so as to keep my shoulders pressed down during the treatment.

JG

Chefdaddy

Skiffin16 said:

No Biggie
Glad you are still kickin...it's hard, but you've already gone through a lot.

You mentioned pushing down on something. When I had my treatments they had my push down on this board like contraptioon that had straps like a jump rope on it. I had to pull up on the straps and push with my feet so as to keep my shoulders pressed down during the treatment.

JG

Hi John,
That's exactly what
Hi John,

That's exactly what I thought they should have something to help yourself stay in place.
They put a foam wedge under my knees and thats it!

They put small foam wedges under my back that go out to help hold my elbows up, but they usually get knocked off when the machine rolls around.

I was "kickin", now it resembles a muscle spasm in my toe! lol

I have eleven more treatments to go. Gulp!

Your friend

Mike

Kent Cass

Skiffin16 said:

No Biggie
Glad you are still kickin...it's hard, but you've already gone through a lot.

You mentioned pushing down on something. When I had my treatments they had my push down on this board like contraptioon that had straps like a jump rope on it. I had to pull up on the straps and push with my feet so as to keep my shoulders pressed down during the treatment.

JG

Mike
At your stage I was on Morph and ice, with the PEG fully operational. Sounds like you're a bit worse-off than I experienced, because of the upper-lip. Mike, I'm 16-month, had gained all my weight back some 8-months after the last Rad, and even returned to work a month after that last Rad. You are living the rough times, Mike. And your times appear to be a lot rougher than a number of others. You just gotta fight the good fight, Mike, and know beyond any and all doubt that you WILL win this battle. As I've recovered at the end of my battle, so will you. Weeks #2-6 were so wonderful for me that they culminated in my spending the first four days of week #6 in a hospital, getting Morph shot into the Port on an hourly basis, along with extreme antibiotics. Thing is, Mike, I turned the corner over the last two days I spent in the hospital- that's when my recovery began, even though I still had over two weeks of Rads yet to go thru. So it was with my battle. What you are living, Mike, is just your battle. As man, Mike, all one can do is have his shirtsleeves rolled-up, fists clenched, wear yourself a nasty grin, and Pray. Hey, you ever wonder what it woulda been like to step in a ring with a prize fighter? Happening now, Mike, and you are up to the task at hand. With me, my opponent didn't know I have a Floyd Patterson left hook. And, remember- you have some important players in your corner:

MAKE SURE THE DRS. KNOW HOW YOU'RE DOING IN THIS FIGHT- they are in this battle with you, as are the Nurses. Also, you must get your nutrition, Mike- this is a MUST. You have to give your body the ammo it needs to win this battle.

Believe, Mike.

kcass

Hondo

Chefdaddy said:

Hi John,
That's exactly what
Hi John,

That's exactly what I thought they should have something to help yourself stay in place.
They put a foam wedge under my knees and thats it!

They put small foam wedges under my back that go out to help hold my elbows up, but they usually get knocked off when the machine rolls around.

I was "kickin", now it resembles a muscle spasm in my toe! lol

I have eleven more treatments to go. Gulp!

Your friend

Mike

Daddy Mike


The 29th is not that far away anymore I will be counting down the days with you my friend.