Jump to content
RemedySpot.com

Update

Rate this topic


Guest guest

Recommended Posts

Great job !!!!!!!!!!! Donnada6bearz wrote: Good Morning All,I finally got to onederland a couple of weeks ago and I got down to 195 and just stayed there. I'm 9 weeks out tomorrow and finally when I got on the scale this morning I'm down to 192 that's 45 pounds since surgery and 65 pounds since orientation. Wow I feel good. I did do a bad thing the other day. My husband had fixed some baked beans and I didn't think but I took a bite and boy did I feel yucky a few minutes later. Duh I said to my self.....he used real brown sugar. I just did not even think about it but I know that feeling if there's too much sugar in something. I just feel light headed, my heart flutters a little and I just feel plain yucky. I know I'll be watching it

from now on.I went to the doctor last week and he said I looked good and was doing good and he didn't need to see me back for 2 months yeah! But he wants me to loose 20 pounds by then. I don't think that will be a problem. I will be glad to.....Orientation 257Surgery 237Now 2/7/06 192Donna JordonDSJordon@...

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

Link to comment
Share on other sites

Great job !!!!!!!!!!! Donnada6bearz wrote: Good Morning All,I finally got to onederland a couple of weeks ago and I got down to 195 and just stayed there. I'm 9 weeks out tomorrow and finally when I got on the scale this morning I'm down to 192 that's 45 pounds since surgery and 65 pounds since orientation. Wow I feel good. I did do a bad thing the other day. My husband had fixed some baked beans and I didn't think but I took a bite and boy did I feel yucky a few minutes later. Duh I said to my self.....he used real brown sugar. I just did not even think about it but I know that feeling if there's too much sugar in something. I just feel light headed, my heart flutters a little and I just feel plain yucky. I know I'll be watching it

from now on.I went to the doctor last week and he said I looked good and was doing good and he didn't need to see me back for 2 months yeah! But he wants me to loose 20 pounds by then. I don't think that will be a problem. I will be glad to.....Orientation 257Surgery 237Now 2/7/06 192Donna JordonDSJordon@...

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

Link to comment
Share on other sites

  • 1 month later...
Guest guest

Randy You are handling everything so well. I'm sure there's really hard times, but the better you handle things and exercise and look out for what Randy needs and stay as strong as you can with your thoughts the better things will turn out. I have had years of dealing with cancer through out my family. Every kind of cancer, I had 3 step sisters die of cancer. Plus it runs in our blood family also, my mom had 13 brothers and sisters, her and 1 brother is all that's left. Also let me say my husband's step mom, they said she won't make it 6 months, it's 4 years later. Yes she battles, but she doesn't give in and she enjoys all she can when she can. I also have another step sister who has fought cancer for 14 years, but many good years and she should of only made it no more than 3 years. So there's not true answers to all this and it's not an easy thing to go through, and very difficult for others around you to handle,

sometimes even more than handling all that you are yourself. They are just so worried, and reaction come and are hard to handle, especially crying. I hope you stay strong, it doesn't make the pain or illness go away but it will help you work through all you need too. I am saying prayers for you every day, I truly hope you're one that you live many many more years than they say. Take care. Donna Jordonjackpoint_94401 wrote: Hi folks - I've spent most of the last few days at doctors - well, that's how I spend almost all my days now. I had my fist visits to UCSF, whre my radiation therapy will be done. I was screened at the oral medicine clinic by an MD/DDS - quite a combo, that! - who tells me that I will need two teeth pulled before radiation can start. This is actually

good news, because I knew I was going to lose the tooth from which I lost the big filling on Christmas, which I just had patched instead of capped because I didn't want the possibility of a post-oral surgery infection to delay my roux-en-Y - and, of course, they pull the matching tooth in the upper jaw to prevent malocclusion and jaw strain. So two was the best I could hope for, and that will happen on Tuesday. The latest MRI and PET scans show my cancer to be growing quite fast, with new spread to the right lymph nodes for the first time. The primary tumor in my throat is now almost twice as large as estimated in the first CT scan, partly because the MRI and PET scans have better resolution, and partly, of course, because it is growing. So, they want me to get started with radiation and chemotherapy as soon as possible, probably around the 28th of March (my tooth extractions have to heal before they can begin, and they

have to do measurements and simulations to aim the radiation, and they have to make a mask to fit my face, head, and shoulders to keep me immobile during treatment (and what a relief to have less weight on my diaphragm when I lie flat on my back!). While I still feel great and work out quite vigorously almost every day, my voice is increasingly altered. The doctor at UCSF says that they call my way of speaking "hot potato speech." Even though my breathing does not seem to be affected, they are seriously considering doing a tracheotomy on me before they start the radiation, just to be sure I have an airway. I continue to try to slow my weight loss ahead of the radiation and chemotherapy, to little avail. My metabolism makes me lose weight more rapidly when I am exercising, and this is a fair tradeoff - I may not keep the weight up as much, but I will be stronger and healthier from the exercise. I have been trying to slow

my weight loss to about 2 1/2 pounds a week, but I am already down to 245 from 281 at my surgery date of 2/2. Lately I am thinking that it will not be so strange to return to a more typical mode of post-bariatric eating from my current indulgences - I'll be so happy to be able to eat, period, that what I'm eating won't much matter. Of course, the fact that most head and neck cancer patients lose their senses of taste for as long as four years after the radiation, and most never wholly regain it, will also make the issue relatively unimportant. I have spent a fair amount of time in the last week having conversations with friends and family - before the voice gets impossible to understand, or before I have the tracheotomy, which will make phone conversations very difficult. And of all the things I am dealing with, these conversations are the hardest. It is very emotionally draining to deal with people's reactions, and when I

have the odd duality of feeling wonderful but knowing I am about to enter a living hell, talking about my health and prospects seems almost unbearably self-indulgent. RandyDonna JordonDSJordon@...

Yahoo! Mail Use Photomail to share photos without annoying attachments.

Link to comment
Share on other sites

Guest guest

Randy - you have to be one of the strongest people I know. I will

keep you in my prayers and pray God will give you the continued

strength.

PEGGY

>

> Hi folks - I've spent most of the last few days at doctors - well,

> that's how I spend almost all my days now. I had my fist visits to

> UCSF, whre my radiation therapy will be done. I was screened at

the

> oral medicine clinic by an MD/DDS - quite a combo, that! - who

tells

> me that I will need two teeth pulled before radiation can start.

> This is actually good news, because I knew I was going to lose the

> tooth from which I lost the big filling on Christmas, which I just

> had patched instead of capped because I didn't want the

possibility

> of a post-oral surgery infection to delay my roux-en-Y - and, of

> course, they pull the matching tooth in the upper jaw to prevent

> malocclusion and jaw strain. So two was the best I could hope for,

> and that will happen on Tuesday.

>

> The latest MRI and PET scans show my cancer to be growing quite

> fast, with new spread to the right lymph nodes for the first time.

> The primary tumor in my throat is now almost twice as large as

> estimated in the first CT scan, partly because the MRI and PET

scans

> have better resolution, and partly, of course, because it is

> growing. So, they want me to get started with radiation and

> chemotherapy as soon as possible, probably around the 28th of

March

> (my tooth extractions have to heal before they can begin, and they

> have to do measurements and simulations to aim the radiation, and

> they have to make a mask to fit my face, head, and shoulders to

keep

> me immobile during treatment (and what a relief to have less

weight

> on my diaphragm when I lie flat on my back!). While I still feel

> great and work out quite vigorously almost every day, my voice is

> increasingly altered. The doctor at UCSF says that they call my

way

> of speaking " hot potato speech. " Even though my breathing does not

> seem to be affected, they are seriously considering doing a

> tracheotomy on me before they start the radiation, just to be sure

I

> have an airway.

>

> I continue to try to slow my weight loss ahead of the radiation

and

> chemotherapy, to little avail. My metabolism makes me lose weight

> more rapidly when I am exercising, and this is a fair tradeoff - I

> may not keep the weight up as much, but I will be stronger and

> healthier from the exercise. I have been trying to slow my weight

> loss to about 2 1/2 pounds a week, but I am already down to 245

from

> 281 at my surgery date of 2/2. Lately I am thinking that it will

not

> be so strange to return to a more typical mode of post-bariatric

> eating from my current indulgences - I'll be so happy to be able

to

> eat, period, that what I'm eating won't much matter. Of course,

the

> fact that most head and neck cancer patients lose their senses of

> taste for as long as four years after the radiation, and most

never

> wholly regain it, will also make the issue relatively unimportant.

>

> I have spent a fair amount of time in the last week having

> conversations with friends and family - before the voice gets

> impossible to understand, or before I have the tracheotomy, which

> will make phone conversations very difficult. And of all the

things

> I am dealing with, these conversations are the hardest. It is very

> emotionally draining to deal with people's reactions, and when I

> have the odd duality of feeling wonderful but knowing I am about

to

> enter a living hell, talking about my health and prospects seems

> almost unbearably self-indulgent.

>

> Randy

>

Link to comment
Share on other sites

Guest guest

WOW Randy

Quite a lot to deal with. I am sending all the positive thoughts and

wishes I can your way.

At least here, you use your fingers for your voice. So use them to

vent scream cry or laugh with us...we are here for you.

Huggles

>

> Hi folks - I've spent most of the last few days at doctors - well,

> that's how I spend almost all my days now. I had my fist visits to

> UCSF, whre my radiation therapy will be done. I was screened at

the

> oral medicine clinic by an MD/DDS - quite a combo, that! - who

tells

> me that I will need two teeth pulled before radiation can start.

> This is actually good news, because I knew I was going to lose the

> tooth from which I lost the big filling on Christmas, which I just

> had patched instead of capped because I didn't want the

possibility

> of a post-oral surgery infection to delay my roux-en-Y - and, of

> course, they pull the matching tooth in the upper jaw to prevent

> malocclusion and jaw strain. So two was the best I could hope for,

> and that will happen on Tuesday.

>

> The latest MRI and PET scans show my cancer to be growing quite

> fast, with new spread to the right lymph nodes for the first time.

> The primary tumor in my throat is now almost twice as large as

> estimated in the first CT scan, partly because the MRI and PET

scans

> have better resolution, and partly, of course, because it is

> growing. So, they want me to get started with radiation and

> chemotherapy as soon as possible, probably around the 28th of

March

> (my tooth extractions have to heal before they can begin, and they

> have to do measurements and simulations to aim the radiation, and

> they have to make a mask to fit my face, head, and shoulders to

keep

> me immobile during treatment (and what a relief to have less

weight

> on my diaphragm when I lie flat on my back!). While I still feel

> great and work out quite vigorously almost every day, my voice is

> increasingly altered. The doctor at UCSF says that they call my

way

> of speaking " hot potato speech. " Even though my breathing does not

> seem to be affected, they are seriously considering doing a

> tracheotomy on me before they start the radiation, just to be sure

I

> have an airway.

>

> I continue to try to slow my weight loss ahead of the radiation

and

> chemotherapy, to little avail. My metabolism makes me lose weight

> more rapidly when I am exercising, and this is a fair tradeoff - I

> may not keep the weight up as much, but I will be stronger and

> healthier from the exercise. I have been trying to slow my weight

> loss to about 2 1/2 pounds a week, but I am already down to 245

from

> 281 at my surgery date of 2/2. Lately I am thinking that it will

not

> be so strange to return to a more typical mode of post-bariatric

> eating from my current indulgences - I'll be so happy to be able

to

> eat, period, that what I'm eating won't much matter. Of course,

the

> fact that most head and neck cancer patients lose their senses of

> taste for as long as four years after the radiation, and most

never

> wholly regain it, will also make the issue relatively unimportant.

>

> I have spent a fair amount of time in the last week having

> conversations with friends and family - before the voice gets

> impossible to understand, or before I have the tracheotomy, which

> will make phone conversations very difficult. And of all the

things

> I am dealing with, these conversations are the hardest. It is very

> emotionally draining to deal with people's reactions, and when I

> have the odd duality of feeling wonderful but knowing I am about

to

> enter a living hell, talking about my health and prospects seems

> almost unbearably self-indulgent.

>

> Randy

>

Link to comment
Share on other sites

Guest guest

Randy

I am going to pray for you. I will keep you in mind on a daily

basis. Keep up the faith.

Cecilia

>

> Hi folks - I've spent most of the last few days at doctors - well,

> that's how I spend almost all my days now. I had my fist visits to

> UCSF, whre my radiation therapy will be done. I was screened at

the

> oral medicine clinic by an MD/DDS - quite a combo, that! - who

tells

> me that I will need two teeth pulled before radiation can start.

> This is actually good news, because I knew I was going to lose the

> tooth from which I lost the big filling on Christmas, which I just

> had patched instead of capped because I didn't want the

possibility

> of a post-oral surgery infection to delay my roux-en-Y - and, of

> course, they pull the matching tooth in the upper jaw to prevent

> malocclusion and jaw strain. So two was the best I could hope for,

> and that will happen on Tuesday.

>

> The latest MRI and PET scans show my cancer to be growing quite

> fast, with new spread to the right lymph nodes for the first time.

> The primary tumor in my throat is now almost twice as large as

> estimated in the first CT scan, partly because the MRI and PET

scans

> have better resolution, and partly, of course, because it is

> growing. So, they want me to get started with radiation and

> chemotherapy as soon as possible, probably around the 28th of

March

> (my tooth extractions have to heal before they can begin, and they

> have to do measurements and simulations to aim the radiation, and

> they have to make a mask to fit my face, head, and shoulders to

keep

> me immobile during treatment (and what a relief to have less

weight

> on my diaphragm when I lie flat on my back!). While I still feel

> great and work out quite vigorously almost every day, my voice is

> increasingly altered. The doctor at UCSF says that they call my

way

> of speaking " hot potato speech. " Even though my breathing does not

> seem to be affected, they are seriously considering doing a

> tracheotomy on me before they start the radiation, just to be sure

I

> have an airway.

>

> I continue to try to slow my weight loss ahead of the radiation

and

> chemotherapy, to little avail. My metabolism makes me lose weight

> more rapidly when I am exercising, and this is a fair tradeoff - I

> may not keep the weight up as much, but I will be stronger and

> healthier from the exercise. I have been trying to slow my weight

> loss to about 2 1/2 pounds a week, but I am already down to 245

from

> 281 at my surgery date of 2/2. Lately I am thinking that it will

not

> be so strange to return to a more typical mode of post-bariatric

> eating from my current indulgences - I'll be so happy to be able

to

> eat, period, that what I'm eating won't much matter. Of course,

the

> fact that most head and neck cancer patients lose their senses of

> taste for as long as four years after the radiation, and most

never

> wholly regain it, will also make the issue relatively unimportant.

>

> I have spent a fair amount of time in the last week having

> conversations with friends and family - before the voice gets

> impossible to understand, or before I have the tracheotomy, which

> will make phone conversations very difficult. And of all the

things

> I am dealing with, these conversations are the hardest. It is very

> emotionally draining to deal with people's reactions, and when I

> have the odd duality of feeling wonderful but knowing I am about

to

> enter a living hell, talking about my health and prospects seems

> almost unbearably self-indulgent.

>

> Randy

>

Link to comment
Share on other sites

Guest guest

I'm keeping you in my prayers, Randy. It sounds like you are doing

everything you can to come through this as well as possible.

When you wrote about talking to friends and family, I had a flashback

to when my father was getting ready to go into the hospital in 1989

for surgery. He wasn't in very good health, since he'd had ongoing

health problems, but at my sister's birthday party I set out a tape

recorder and got him talking about his childhood and his family and

so on. . . A week later, a few days after surgery, he had a stroke.

He lived for another two years, but his voice and much of his memory

were severely affected.

That tape was the most wonderful blessing for all of us, because he

opened up and talked about things that he'd never really shared

before. If we'd waited to do it later, Dad wouldn't have been able to

remember much of what he told us that day. And years later, it was so

wonderful to be able to pull out that tape and listen to his voice

again! But more than anything else, what I remember was just sitting

there and listening to him talk, and knowing that it was important to

him to share those memories with us while he still could.

It's not self-indulgent to talk with others about your feelings right

now. You need to do it, and you are giving others a chance to do

something for you, which helps them as well. They can't take away

the cancer or do much else, but they CAN listen. Let them do that

for you and don't feel guilty.

Cathy C.

>

> Hi folks - I've spent most of the last few days at doctors - well,

> that's how I spend almost all my days now. I had my fist visits to

> UCSF, whre my radiation therapy will be done. I was screened at the

> oral medicine clinic by an MD/DDS - quite a combo, that! - who

tells

> me that I will need two teeth pulled before radiation can start.

> This is actually good news, because I knew I was going to lose the

> tooth from which I lost the big filling on Christmas, which I just

> had patched instead of capped because I didn't want the possibility

> of a post-oral surgery infection to delay my roux-en-Y - and, of

> course, they pull the matching tooth in the upper jaw to prevent

> malocclusion and jaw strain. So two was the best I could hope for,

> and that will happen on Tuesday.

>

> The latest MRI and PET scans show my cancer to be growing quite

> fast, with new spread to the right lymph nodes for the first time.

> The primary tumor in my throat is now almost twice as large as

> estimated in the first CT scan, partly because the MRI and PET

scans

> have better resolution, and partly, of course, because it is

> growing. So, they want me to get started with radiation and

> chemotherapy as soon as possible, probably around the 28th of March

> (my tooth extractions have to heal before they can begin, and they

> have to do measurements and simulations to aim the radiation, and

> they have to make a mask to fit my face, head, and shoulders to

keep

> me immobile during treatment (and what a relief to have less weight

> on my diaphragm when I lie flat on my back!). While I still feel

> great and work out quite vigorously almost every day, my voice is

> increasingly altered. The doctor at UCSF says that they call my way

> of speaking " hot potato speech. " Even though my breathing does not

> seem to be affected, they are seriously considering doing a

> tracheotomy on me before they start the radiation, just to be sure

I

> have an airway.

>

> I continue to try to slow my weight loss ahead of the radiation and

> chemotherapy, to little avail. My metabolism makes me lose weight

> more rapidly when I am exercising, and this is a fair tradeoff - I

> may not keep the weight up as much, but I will be stronger and

> healthier from the exercise. I have been trying to slow my weight

> loss to about 2 1/2 pounds a week, but I am already down to 245

from

> 281 at my surgery date of 2/2. Lately I am thinking that it will

not

> be so strange to return to a more typical mode of post-bariatric

> eating from my current indulgences - I'll be so happy to be able to

> eat, period, that what I'm eating won't much matter. Of course, the

> fact that most head and neck cancer patients lose their senses of

> taste for as long as four years after the radiation, and most never

> wholly regain it, will also make the issue relatively unimportant.

>

> I have spent a fair amount of time in the last week having

> conversations with friends and family - before the voice gets

> impossible to understand, or before I have the tracheotomy, which

> will make phone conversations very difficult. And of all the things

> I am dealing with, these conversations are the hardest. It is very

> emotionally draining to deal with people's reactions, and when I

> have the odd duality of feeling wonderful but knowing I am about to

> enter a living hell, talking about my health and prospects seems

> almost unbearably self-indulgent.

>

> Randy

>

Link to comment
Share on other sites

Guest guest

Oh Randy, I can't imagine how hard all of this must be. I am sure the conversatoins with family are pretty draining. It's just not a fun or easy thing to deal with, anyway you look at it. I'm glad you are starting the radiation/chemo pretty soon. It will probably take it's toll, it won't be easy...but at least will shrink the tumor, and maybe anhilate the cancer altogether. That will certainly be my prayer. Remember to visual your healthy cells successfully fighting off the bad cells. Give yourself time to really mediate and visualize that successful battle going on in your body. If you have a hard time, and you ever need someone to help you, I know a hypnotherapist who is marvelous and has really helped me...and she might help you reach peace, and to turn on the mechanisms in your body that will help you be the victor in this battle. Let me know, and I will give you her name and number. She's a

really wonderful person, too. With your working out, I hope you are concentrating on weight lifting. You will need your muscle to help you get through without wasting away. The cardiovascular is really important, too. I'm sorry you have scary news to deal with...but you have not yet begun to fight...so gear up and remember that you deserve to triumph over this thing!! We love you, Robynncecilia wrote: RandyI am going to pray for you. I will keep you in mind on a daily basis. Keep up the faith.Cecilia>> Hi folks - I've spent most of

the last few days at doctors - well, > that's how I spend almost all my days now. I had my fist visits to > UCSF, whre my radiation therapy will be done. I was screened at the > oral medicine clinic by an MD/DDS - quite a combo, that! - who tells > me that I will need two teeth pulled before radiation can start. > This is actually good news, because I knew I was going to lose the > tooth from which I lost the big filling on Christmas, which I just > had patched instead of capped because I didn't want the possibility > of a post-oral surgery infection to delay my roux-en-Y - and, of > course, they pull the matching tooth in the upper jaw to prevent > malocclusion and jaw strain. So two was the best I could hope for, > and that will happen on Tuesday. > > The latest MRI and PET scans show my cancer to be growing quite > fast, with new spread to the right lymph nodes for the

first time. > The primary tumor in my throat is now almost twice as large as > estimated in the first CT scan, partly because the MRI and PET scans > have better resolution, and partly, of course, because it is > growing. So, they want me to get started with radiation and > chemotherapy as soon as possible, probably around the 28th of March > (my tooth extractions have to heal before they can begin, and they > have to do measurements and simulations to aim the radiation, and > they have to make a mask to fit my face, head, and shoulders to keep > me immobile during treatment (and what a relief to have less weight > on my diaphragm when I lie flat on my back!). While I still feel > great and work out quite vigorously almost every day, my voice is > increasingly altered. The doctor at UCSF says that they call my way > of speaking "hot potato speech." Even though my breathing

does not > seem to be affected, they are seriously considering doing a > tracheotomy on me before they start the radiation, just to be sure I > have an airway. > > I continue to try to slow my weight loss ahead of the radiation and > chemotherapy, to little avail. My metabolism makes me lose weight > more rapidly when I am exercising, and this is a fair tradeoff - I > may not keep the weight up as much, but I will be stronger and > healthier from the exercise. I have been trying to slow my weight > loss to about 2 1/2 pounds a week, but I am already down to 245 from > 281 at my surgery date of 2/2. Lately I am thinking that it will not > be so strange to return to a more typical mode of post-bariatric > eating from my current indulgences - I'll be so happy to be able to > eat, period, that what I'm eating won't much matter. Of course, the > fact that most

head and neck cancer patients lose their senses of > taste for as long as four years after the radiation, and most never > wholly regain it, will also make the issue relatively unimportant. > > I have spent a fair amount of time in the last week having > conversations with friends and family - before the voice gets > impossible to understand, or before I have the tracheotomy, which > will make phone conversations very difficult. And of all the things > I am dealing with, these conversations are the hardest. It is very > emotionally draining to deal with people's reactions, and when I > have the odd duality of feeling wonderful but knowing I am about to > enter a living hell, talking about my health and prospects seems > almost unbearably self-indulgent. > > Randy>

Link to comment
Share on other sites

Guest guest

Randy- i cant imagine all the feelings and thoughts that must be going through your mind. I think you have a good outlook on it and good spirits. I will be keeping you in good thoughts and my prayers for things to work well for you colleenjackpoint_94401 wrote: Hi folks - I've spent most of the last few days at doctors - well, that's how I spend almost all my days now. I had my fist visits to UCSF, whre my radiation therapy will be done. I was screened at the oral medicine clinic by an MD/DDS - quite a combo, that! - who tells me that I will need two teeth pulled before radiation can start. This is actually good news, because I knew I was going to lose the tooth from which I lost the big filling on Christmas, which I just had

patched instead of capped because I didn't want the possibility of a post-oral surgery infection to delay my roux-en-Y - and, of course, they pull the matching tooth in the upper jaw to prevent malocclusion and jaw strain. So two was the best I could hope for, and that will happen on Tuesday. The latest MRI and PET scans show my cancer to be growing quite fast, with new spread to the right lymph nodes for the first time. The primary tumor in my throat is now almost twice as large as estimated in the first CT scan, partly because the MRI and PET scans have better resolution, and partly, of course, because it is growing. So, they want me to get started with radiation and chemotherapy as soon as possible, probably around the 28th of March (my tooth extractions have to heal before they can begin, and they have to do measurements and simulations to aim the radiation, and they have to make a mask to fit my face, head, and

shoulders to keep me immobile during treatment (and what a relief to have less weight on my diaphragm when I lie flat on my back!). While I still feel great and work out quite vigorously almost every day, my voice is increasingly altered. The doctor at UCSF says that they call my way of speaking "hot potato speech." Even though my breathing does not seem to be affected, they are seriously considering doing a tracheotomy on me before they start the radiation, just to be sure I have an airway. I continue to try to slow my weight loss ahead of the radiation and chemotherapy, to little avail. My metabolism makes me lose weight more rapidly when I am exercising, and this is a fair tradeoff - I may not keep the weight up as much, but I will be stronger and healthier from the exercise. I have been trying to slow my weight loss to about 2 1/2 pounds a week, but I am already down to 245 from 281 at my surgery date of 2/2. Lately

I am thinking that it will not be so strange to return to a more typical mode of post-bariatric eating from my current indulgences - I'll be so happy to be able to eat, period, that what I'm eating won't much matter. Of course, the fact that most head and neck cancer patients lose their senses of taste for as long as four years after the radiation, and most never wholly regain it, will also make the issue relatively unimportant. I have spent a fair amount of time in the last week having conversations with friends and family - before the voice gets impossible to understand, or before I have the tracheotomy, which will make phone conversations very difficult. And of all the things I am dealing with, these conversations are the hardest. It is very emotionally draining to deal with people's reactions, and when I have the odd duality of feeling wonderful but knowing I am about to enter a living hell, talking about my health and

prospects seems almost unbearably self-indulgent. Randy

Colleen

Link to comment
Share on other sites

Guest guest

Randy

I pray for you for strength, peace, and endurance to fight the good

fight. Im sending all that I can offer to you to help you!

Big Huggles

>

> Just to let you know - my chemo starts tomorrow. Because my cancer

> is growing so fast, the doctors decided to use different

> chemotherapy agents, and as a result I will not have to have a

port

> surgically installed to drip in what they had been planning to

use.

> However, the agents they will use are toxic enough and have enough

> nasty side effects that I will be sedated, and I will also be

> getting some IV benadryl to combat expected side effects, so I'll

be

> pretty loopy. Same treatment next Tuesday, and then, if all the

> appointments and timing work out, I will begin the five-days-a-

week

> radiation treatments the following Monday or Tuesday, with chemo

on

> the first day, three weeks later, and on the last day.

>

> While I continue to feel pretty good (well, up to maybe 9:30

> tomorrow morning, anyway), and still able to eat without too much

> difficulty, there is no doubt that I can feel that the tumor has

> grown. It becomes increasingly difficult to swallow solid foods,

and

> my voice has become incresingly distorted and weaker. It's getting

> higher, which suggests to me that the air is vibrating in a much

> narrower passage (which I am calling the piccolo-versus-tuba

> theory). I hope I don't lose speech altogether, although it would

> surely only be temporary - there's nothing near my vocal cords or

> larynx.

>

> I have been doing all I can to keep the weight up, and I am now

down

> to 243, but I have stayed between there and 249 for almost two

weeks

> now, so I am fighting the good fight there. No matter how the

> radiation affects my ability to eat, though, I expect that I will

be

> down a hundred more pounds over the next three to four months.

That

> would be a loss of 50% of my body mass in just over five months -

a

> good bit faster and farther, I daresay, than most WLS patients.

When

> I look at weight loss that rapid while under the strain of the

> cancer and the therapies, I count every second I spent exercising

as

> having built a wall between life and death from cardiac

exhaustion.

>

> My 49th birthday is coming up on March 31, but since I may have

> started radiation by then, we decided to celebrate a few days

early,

> this coming Sunday. Here's hoping it won't be my last!

>

> Randy

>

Link to comment
Share on other sites

Guest guest

Randy I was talking to one of my step sisters yesterday and found out her daughter who had WLS also had a tumor in her throat. She told me they didn't expect her to make it, she was a year out of WLS when they found the cancer. The doctors also did this kind of treatment with her. It's a year later she is doing great. Thought you should hear this. My niece that had the WLS and had breast cancer is also doing great. So stay strong, times will be so hard and trying, but have faith. As far as the ports I'm glad you're not having them my husbands step mother and a uncle who had them fight infection with them all the time. So know we're here for you, Happy Early Birthday, and my my candle will be lite for you. Take care. Donna J.jackpoint_94401 wrote: Just to let you know - my chemo starts tomorrow. Because my cancer is growing so fast, the doctors decided to use different chemotherapy agents, and as a result I will not have to have a port surgically installed to drip in what they had been planning to use. However, the agents they will use are toxic enough and have enough nasty side effects that I will be sedated, and I will also be getting some IV benadryl to combat expected side effects, so I'll be pretty loopy. Same treatment next Tuesday, and then, if all the appointments and timing work out, I will begin the five-days-a-week radiation treatments the following Monday or Tuesday, with chemo on the first day, three weeks later, and on the last day. While I continue to feel pretty good (well, up to maybe 9:30 tomorrow morning, anyway), and still able to eat without too much difficulty, there is no doubt that I can feel that the tumor has grown. It becomes

increasingly difficult to swallow solid foods, and my voice has become incresingly distorted and weaker. It's getting higher, which suggests to me that the air is vibrating in a much narrower passage (which I am calling the piccolo-versus-tuba theory). I hope I don't lose speech altogether, although it would surely only be temporary - there's nothing near my vocal cords or larynx. I have been doing all I can to keep the weight up, and I am now down to 243, but I have stayed between there and 249 for almost two weeks now, so I am fighting the good fight there. No matter how the radiation affects my ability to eat, though, I expect that I will be down a hundred more pounds over the next three to four months. That would be a loss of 50% of my body mass in just over five months - a good bit faster and farther, I daresay, than most WLS patients. When I look at weight loss that rapid while under the strain of the cancer and

the therapies, I count every second I spent exercising as having built a wall between life and death from cardiac exhaustion. My 49th birthday is coming up on March 31, but since I may have started radiation by then, we decided to celebrate a few days early, this coming Sunday. Here's hoping it won't be my last!RandyDonna JordonDSJordon@...

Yahoo! Mail Use Photomail to share photos without annoying attachments.

Link to comment
Share on other sites

Guest guest

Randy- Thanks for the update, I am sure today is a mindful day for you thinking about all that is going on and will be happening. I am glad your doing your birthday early ! Happy Birthday hugs to you ! I will keep you in my thoughts and prayers as i have been and know that you have a good group of friends here colleenjackpoint_94401 wrote: Just to let you know - my chemo starts tomorrow. Because my cancer is growing so fast, the doctors decided to use different chemotherapy agents, and as a result I will not have to have a port surgically installed to drip in what they had been planning to use. However, the agents they will use are toxic enough and have enough nasty side effects that I will be sedated, and I will also be getting some IV

benadryl to combat expected side effects, so I'll be pretty loopy. Same treatment next Tuesday, and then, if all the appointments and timing work out, I will begin the five-days-a-week radiation treatments the following Monday or Tuesday, with chemo on the first day, three weeks later, and on the last day. While I continue to feel pretty good (well, up to maybe 9:30 tomorrow morning, anyway), and still able to eat without too much difficulty, there is no doubt that I can feel that the tumor has grown. It becomes increasingly difficult to swallow solid foods, and my voice has become incresingly distorted and weaker. It's getting higher, which suggests to me that the air is vibrating in a much narrower passage (which I am calling the piccolo-versus-tuba theory). I hope I don't lose speech altogether, although it would surely only be temporary - there's nothing near my vocal cords or larynx. I have been doing all I can

to keep the weight up, and I am now down to 243, but I have stayed between there and 249 for almost two weeks now, so I am fighting the good fight there. No matter how the radiation affects my ability to eat, though, I expect that I will be down a hundred more pounds over the next three to four months. That would be a loss of 50% of my body mass in just over five months - a good bit faster and farther, I daresay, than most WLS patients. When I look at weight loss that rapid while under the strain of the cancer and the therapies, I count every second I spent exercising as having built a wall between life and death from cardiac exhaustion. My 49th birthday is coming up on March 31, but since I may have started radiation by then, we decided to celebrate a few days early, this coming Sunday. Here's hoping it won't be my last!Randy

Colleen

Link to comment
Share on other sites

Guest guest

Randy...While it is good to be prepared for worst case scenarios, just focus on the fact that you will someday see your 70th birthday. Keep fighting. You are going to feel horrible at times during the chemo, be ready for that...and know that if there is ANYTHING we can do, please let us know...we can mobilize. the weightloss, while in some ways, is taxing on your system, and you obviously don't want to get too thin...at the same time, will take a lot of pressure off of your heart. Also, I think they probably gage the amount of chemo based upon your weight, in some respects...so you will have THAT much less toxin going through you. All of that is a good thing. Make sure that the person prescribing the dosage is aware of weight changes that may continue to occur. We are thinking of you and praying for you... Robynn Colleen Garner

wrote: Randy- Thanks for the update, I am sure today is a mindful day for you thinking about all that is going on and will be happening. I am glad your doing your birthday early ! Happy Birthday hugs to you ! I will keep you in my thoughts and prayers as i have been and know that you have a good group of friends here colleenjackpoint_94401 wrote: Just to let you know - my chemo starts tomorrow. Because my cancer is growing so fast, the doctors decided to use different chemotherapy agents, and as a result I will not have to have a port surgically installed to drip in what they had been planning to use. However, the agents they will use

are toxic enough and have enough nasty side effects that I will be sedated, and I will also be getting some IV benadryl to combat expected side effects, so I'll be pretty loopy. Same treatment next Tuesday, and then, if all the appointments and timing work out, I will begin the five-days-a-week radiation treatments the following Monday or Tuesday, with chemo on the first day, three weeks later, and on the last day. While I continue to feel pretty good (well, up to maybe 9:30 tomorrow morning, anyway), and still able to eat without too much difficulty, there is no doubt that I can feel that the tumor has grown. It becomes increasingly difficult to swallow solid foods, and my voice has become incresingly distorted and weaker. It's getting higher, which suggests to me that the air is vibrating in a much narrower passage (which I am calling the piccolo-versus-tuba theory). I hope I don't lose speech altogether, although it

would surely only be temporary - there's nothing near my vocal cords or larynx. I have been doing all I can to keep the weight up, and I am now down to 243, but I have stayed between there and 249 for almost two weeks now, so I am fighting the good fight there. No matter how the radiation affects my ability to eat, though, I expect that I will be down a hundred more pounds over the next three to four months. That would be a loss of 50% of my body mass in just over five months - a good bit faster and farther, I daresay, than most WLS patients. When I look at weight loss that rapid while under the strain of the cancer and the therapies, I count every second I spent exercising as having built a wall between life and death from cardiac exhaustion. My 49th birthday is coming up on March 31, but since I may have started radiation by then, we decided to celebrate a few days early, this coming Sunday. Here's hoping it won't

be my last!Randy Colleen

Link to comment
Share on other sites

  • 3 weeks later...
Guest guest

Ramona, I have a hernia too, and am hoping for a tummy

tuck with the repair. Let me know what you find out

there.

Sorry about the doggy situation, that has to suck. At

least you will have him back with you soon.

Laurie

__________________________________________________

Link to comment
Share on other sites

Guest guest

kaiser ok'd my hernias and tt....no clue why they turned you down....I am having it in a few months...unless they ok the upper surg 100%, then that is first bee __________________________________________________

Link to comment
Share on other sites

Guest guest

Randy... I sure understand that you are probably too tired to read everything. Thank you for the update. Little note about the hair loss...the cool thing is that everybody I know who lost hair through chemo has had it grow back in even thicker than it ever was before. this is good news for a guy, right? I'm sorry to hear about your jaw and the pain. Are they going to radiate the jaw? Is it not responding to the chemo at all? At the same time, great great news about your voice and the swallowing and alll of that. I continue to pray for you, to send positive thoughts your way. Big hug and kiss to you. Tell your girlfriend I think she's a very cool chick from everything you've said. Robynnjackpoint_94401 wrote:

Hi friends just a quick update after another chemo and my first week of radiation treatments. Since this was my third chemo, my hair started to fall out in huge clumps right on schedule. The next day I got a hair catcher for the shower drain at the hardware store, but by the next day I figured there wasn't much point, and I asked my girlfriend to trim my hair down to a stubble, so I don't spend a ridiculously disproportionate part of my life cleaning up my falling hair! Of course, she couldn't resist doing a Mohawk first and taking pictures...I have lost another six pounds or so, but I am claiming that four of that was hair!Aside from losing my hair, which should come back in three or four months, I am definitely feeling more effects, both good and bad, from my treatments. First, the good - my tumor is definitely

smaller, the swelling in my neck (mostly lymphatic fluids) is also smaller, and I have lost the "hot potato" voice and my voice is more or less back to normal. The bad - although the swelling in my neck is overall a good bit smaller, there has been some spread, over the point of my jaw for the first time, and the new swelling is painful and tender - I could not sleep on my left side because the [ressure of the pillow on my face was painful. I have nausea now most of the time, and I have already lost about 3/4 of my sense of taste. My stomach is more sensitive, and I cannot eat very spicy foods or most raw vegetables or fruit (not that I was eating that much of the latter two anyway). My energy is also very depleted. I am not able to keep up with reading and replying to every message, but I appreciate all the good wishes you all have sent.Randy

Link to comment
Share on other sites

Guest guest

Randy

Sending you all the good thoughts and strength that I can! I pray

that everything comes out well and you can begin enjoying new health!

>

> Hi friends just a quick update after another chemo and my first

week

> of radiation treatments. Since this was my third chemo, my hair

> started to fall out in huge clumps right on schedule. The next day

I

> got a hair catcher for the shower drain at the hardware store, but

> by the next day I figured there wasn't much point, and I asked my

> girlfriend to trim my hair down to a stubble, so I don't spend a

> ridiculously disproportionate part of my life cleaning up my

falling

> hair! Of course, she couldn't resist doing a Mohawk first and

taking

> pictures...I have lost another six pounds or so, but I am claiming

> that four of that was hair!

>

> Aside from losing my hair, which should come back in three or four

> months, I am definitely feeling more effects, both good and bad,

> from my treatments. First, the good - my tumor is definitely

> smaller, the swelling in my neck (mostly lymphatic fluids) is also

> smaller, and I have lost the " hot potato " voice and my voice is

more

> or less back to normal. The bad - although the swelling in my neck

> is overall a good bit smaller, there has been some spread, over

the

> point of my jaw for the first time, and the new swelling is

painful

> and tender - I could not sleep on my left side because the

[ressure

> of the pillow on my face was painful. I have nausea now most of

the

> time, and I have already lost about 3/4 of my sense of taste. My

> stomach is more sensitive, and I cannot eat very spicy foods or

most

> raw vegetables or fruit (not that I was eating that much of the

> latter two anyway). My energy is also very depleted. I am not able

> to keep up with reading and replying to every message, but I

> appreciate all the good wishes you all have sent.

>

> Randy

>

Link to comment
Share on other sites

Guest guest

WOW, I can really relate to what you are going thru.

I hope that you and your hubby can work things out and I pray for

strength for you while you struggle both with your relationship and

your health issues.

I can certainly relate. Im going thru some major major crisis at

work and it should come to a head today. We had to let some one go

at work and she is making a major major problem for

everyone..including stirring up the parents and inciting them to

picket this morning! She also has some personal information on me

that she tried to blackmail me with and I called her on it. Ive been

in so much stress the last week I wasnt sure I could handle it. But

Im coming through it and will be ok.

>

> Hi Everyone I just thought I would check in and let you all know

what is

> going on in my life. I have been dealing with a lot of stress

these last

> couple of weeks. My husband's diabetes has been out of control and

he

> finally went on insulin. He has been having a lot of mood swings

also.

> My relationship with my husband had been kind of deteriorating

lately. I

> wasn't to sure what was going on there I was really getting in to

a very

> big funk about it. I finally called Kaiser and got an appointment

with a

> new therapist cause mine went on maternity leave. It was the best

thing

> I could have done. After talking to her about all of my trials and

> tribulations and after we discussed it for a bit she told me to

call my

> Gyn. I am so glad that I did. I found out that I need some

hormones.

> Since then now I feel more on an even keel. Our communication

skills

> were suffering greatly and neither one of us were communicating our

> needs to each other. So that is something we have started to work

on and

> it seems to be helping. It really does help going to a neutral

party and

> talking about things. Then I went to see my PCP a day later and

now he

> tells me I have a hernia. He wanted to know if I wanted to be

referred

> to surgery to have it fixed.I told him to wait on the referral

because I

> want to drop some more of my excess weight. I told him that I

would like

> to lose an other 40 pounds before I even start thinking about more

> surgery. He said just to email him when I was ready. So all I have

to

> lose now is another 35 cause 5 are already gone. Someone said at a

> meeting that they weren't doing the tummy tuckes anymore if you

got a

> hernia. If any one knows otherwise could you let me know of a

tummy tuck

> friendly Kaiser surgeon in the Santa Clara area. So if that weren't

> enough then yesterday we get this notice from management that we

have to

> get rid of our dog Hennessey or move within the next 7 days. I am

so sad

> about that. We had him here for a year and they finally found out

about

> him. Oh well at least he went just to my nephew's house. Now we

have to

> move because I really became attached to that darn dog. We had been

> planning to move with in the next couple of months but now we hope

to

> move next month. So sometimes life just kicks you in the pants.

Ramona

>

Link to comment
Share on other sites

Guest guest

well not no cost as Kaiser is a ppo...200/day and yes the rest is free upper= boobs and arms...my boobs got smaller but not small enough,,, so need a reduct and lift...the arms are being negotitated as the two are killing my bck and neckLLLORY@... wrote: bee? what is an upper surgery? Are you having thehernia and tt at no cost?Thanks,Laurie__________________________________________________

Link to comment
Share on other sites

Guest guest

Hi Randy,

I have been so out-of-touch that I hadn't realized what challenges you

are facing. You will definitely be in my prayers.

I am so impressed that your spirit still shines through in your

writing. Four pounds of heair, indeed!

I'll keep this short cuz I know you're having a hard time keeping up

with all the postings. I'm sending you all the positive thoughts,

energy, etc. that I can.

All the best,

Kay (in San Leandro)

Open RNY Dec. 1, 2003

jackpoint_94401 wrote:

> Hi friends just a quick update after another chemo and my first week

> of radiation treatments. Since this was my third chemo, my hair

> started to fall out in huge clumps right on schedule. The next day I

> got a hair catcher for the shower drain at the hardware store, but

> by the next day I figured there wasn't much point, and I asked my

> girlfriend to trim my hair down to a stubble, so I don't spend a

> ridiculously disproportionate part of my life cleaning up my falling

> hair! Of course, she couldn't resist doing a Mohawk first and taking

> pictures...I have lost another six pounds or so, but I am claiming

> that four of that was hair!

>

> Aside from losing my hair, which should come back in three or four

> months, I am definitely feeling more effects, both good and bad,

> from my treatments. First, the good - my tumor is definitely

> smaller, the swelling in my neck (mostly lymphatic fluids) is also

> smaller, and I have lost the " hot potato " voice and my voice is more

> or less back to normal. The bad - although the swelling in my neck

> is overall a good bit smaller, there has been some spread, over the

> point of my jaw for the first time, and the new swelling is painful

> and tender - I could not sleep on my left side because the [ressure

> of the pillow on my face was painful. I have nausea now most of the

> time, and I have already lost about 3/4 of my sense of taste. My

> stomach is more sensitive, and I cannot eat very spicy foods or most

> raw vegetables or fruit (not that I was eating that much of the

> latter two anyway). My energy is also very depleted. I am not able

> to keep up with reading and replying to every message, but I

> appreciate all the good wishes you all have sent.

>

> Randy

Link to comment
Share on other sites

Guest guest

Hi - I'm Cheryl and I have posted a time or two - I just mostly read but I do have a question for the "veterans". What is your experience with Kaiser performing the "tummy tucks" and "breast reductions" when needed? I am scheduled for surgery on May 25 but have already lost more than 100 lbs. in the last four to five years and am already having problems with the excess skin and I am sure through the summer (if we get one) it will be much worse. I imagine I will need a breast reduction also because am still wearing the same cup size. Anyway, any info would be greatly appreciated. Thank you. LLLORY@... wrote: bee? what is an upper surgery? Are you having thehernia and tt at no cost?Thanks,Laurie__________________________________________________

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...