How do you "feel"?

LeeinLondon

Hi everybody;

I have a question for you.. how do you "feel" most days? Pain aside, do you feel normal, sickly, weird? Lately I've been feeling really sick every day and I wonder if it's my liver acting up. I choke a lot which is unpleasant, and am finding it really hard not to just sleep the day away (which ruins my night sleep)... so... how do you "feel"?

Lee

chemosmoker

How I "feel" and then some...
Most days, I can relate to exactly how you feel. I have a general feeling of malaise, sickness, of not being okay. Just a weird cloud of 'there's something wrong' so if I had never been to a doctor, I would KNOW instinctively that there is something amiss inside of my body. Knowing what is wrong, I know what the feeling comes from, but it still doesn't fit the feelings most days. My pain may be around the area the tumors are pressing on nerves and vessels, and my lower back can hurt like I have a spinal injury most days, I know the palpitations are due to the tumor in my esophagus that has entangled itself around my aorta. I burp and belch all the time. Until I was diagnosed, Michelle started to think I had lost ALL of my manners I believe! The burping helps tremendously. I love a good burp, but sadly I always taste blood when I do burp, unless it is after eating. My tumors are malignant and I am loosing blood from my stomach. I am anemic and try to take iron. That hurts, and helps. Otherwise I am hot/cold all the time. It can be 90 in here and I am shivering, or 65 inside and I am sweating.

I find I do BEST when I am distracted by doing things, like taking a hike or a walk, or into a project, as those are the ONLY times I feel "normal". Otherwise I haven't felt normal since shortly after being diagnosed. I will now ramble about all the other things not in your direct question, to explain further:

I get nausea at random times after taking a full dose of pain meds. It is just the meds reacting with my stomach. It passes or I eat handfuls of Cheerio's or anything salty to get past that. I have not had any vomiting nor have I ever taken the Ondancetron that they prescribed for me in the beginning. Having done NO chemo or radiation, I have had no changes in taste, no mouth sores, no tiredness beyond what I describe as the cancer's metabolism robbing me of mine. I eat almost everything I used too still. Sandwiches for lunch, eggs and ham and cheese for breakfast, the normal three main meals, although smaller portions as my stomach is 1/3 tumor now, then I eat about five (or more) smaller "meals" with cereals, lasagna, stir-fry, lots of yogurt, tons of cottage cheese, cheesecake and cheese fridge pies with fruit and freezer pops like they are going out of style. I do NOT watch my diet, my sugar intake or anything of the sort. I am eating to stay alive, literally. With no feeding tube, it is up to me and my mouth to do the job! I am trying to at least KEEP my weight the same week to week, or go up whenever possible. It is a workout as I can eat 6000 calories and not gain a pound. I have avoided dry bread, steak, and things that I have eaten and had any problems with. Watermelon is on the "no-fly" list as we jokingly call it. I add to the list as I need to, but I haven't had a problem swallowing since early July. I chew VERY carefully and eat the same comfort foods for the most part, although the list is long. I avoid anything spicy like chili or spaghetti and the like. I also do NOT eat at least an hour or more before laying down, lest I pay for that dearly with acid reflux from hell.

I sleep at night, some, trying to be normal but it is rarely like it used to be. With the reflux and pain, I am up too much and never get past 4-5 hours on a good night, and THAT is with a wake-up every 1.5-2 hours on average. I sleep better during the day, when I CAN nap. That's when I catch up, usually when my body gets tired enough, and I will lose from several hours to most of a day to sleep then. I sleep better on the couch in the living room than I do trying to sleep at night in the bed. I still "go" to bed every night, between 12-2am, but as above, it is not restful. I wake up feeling horrible if I ever sleep more than 4-5 hours at night I have learned. And that's with the wake up every so often. I am up early. I have gotten used to that now.

As for how I "feel", there is NO way to state it OTHER than pain. I am constantly "dosed" on Oxycontin and Oxycodone. I take a baseline of about 240MG of Oxycontin daily (80MG every 6 hours now) and then 30MG fast-acing Oxycodone as needed, which has been as much as 6 times a day on a bad day, and 2-3 times a day on a great day. Waking up, taking a shower, those are the times I take it without fail with breakthrough pain.

So to try and state how I FEEL, without pain factored in (or out), would be impossible. I am granted a 1-3 on the 0-10 pain scale when the meds are working well-I count that as a miracle. Having run out of meds twice due to pharmacy/doctor issues, I KNOW what the pain is like when it goes untreated. The withdraw is 1000 times worse than the pain, so that is avoided. Since Hospice has been involved, that has not happened and I supposed it will not again, God willing.

Thanks for the topic, Lee. I am curious to see all the answers! That is how I feel. Most of the time.
-Eric

jim2011

I crave pizza
from Pizza Man. A big cheezy mess. Lots of sausage and onion. Unfortunately...that is out of the question for me and that sucks. I used to be able to eat a large with a coke and lay on the couch moaning and holding my belly. lol I now have some kind of milk allergy and cheeze is out.
So how I feel now? My situation is diff from yours. I have had the standard of care for stage III esophageal cancer including the surgery in April 2011.
Pieces of apple or grapes still get stuck but I can eat steak and veggies so thats good. I have back pain so I still take a lot of pain meds. Sleep with my upper body and head raised but with ambien its nbd.
I highly recommend a wedge to raise your upper body and another smaller one under your knees to keep you from sliding down during the night. Sleep and pain management are huge deals imho. If you find yourself waking up coughing then you need to make some changes. For sure dont eat 3 hours before sleeping and get your head up so gravity can be your friend.
Physical therapy and time will help my back pain and then we will see.
Energy levels are great in the morning and thats when I plan all my appointments. By the afternoon I am wiped out physically. During chemo/radiation I went from bed to the couch and then later back to bed so compared to then I am making serious progress.

jim2011

Sometimes its the meds talking for me
Its 8:15AM Central Time and I just took some vicodins and valium so until they kick in I may be feeling what reality is all about for me and I already know that I am far from normal. I looked up London, Ontario on the map and see that from my home in central Minnesota, I am closer to Red Lake, Ontario than you are. I fly into Trout Lake just east of Red Lake for walleye, northern and lake trout 2-3 times per season. I was not able to go this summer for the first time in 26 years. Maybe living with cancer is all about short term goals but I plan to be jigging for bigg pike when the season opens in mid May 2012. Thats the long term goal for me. The short term is to finish insulating my work shop and then building some woodpecker houses.
Jim

LeeinLondon

jim2011 said:

Sometimes its the meds talking for me
Its 8:15AM Central Time and I just took some vicodins and valium so until they kick in I may be feeling what reality is all about for me and I already know that I am far from normal. I looked up London, Ontario on the map and see that from my home in central Minnesota, I am closer to Red Lake, Ontario than you are. I fly into Trout Lake just east of Red Lake for walleye, northern and lake trout 2-3 times per season. I was not able to go this summer for the first time in 26 years. Maybe living with cancer is all about short term goals but I plan to be jigging for bigg pike when the season opens in mid May 2012. Thats the long term goal for me. The short term is to finish insulating my work shop and then building some woodpecker houses.
Jim

thanks..
for the feedback. Motivation certainly seems to be a big part of all this, I used to love to read now I have no interest, and my sweats/chills didn't exactly make summertime very attractive to me. Perhaps I'll take up judo..

oh, and thanks so much for the sudden pizza craving Jim ...hope that we can welcome you May 2012!

cheers,
Lee

Unknown

LeeinLondon said:

thanks..
for the feedback. Motivation certainly seems to be a big part of all this, I used to love to read now I have no interest, and my sweats/chills didn't exactly make summertime very attractive to me. Perhaps I'll take up judo..

oh, and thanks so much for the sudden pizza craving Jim ...hope that we can welcome you May 2012!

cheers,
Lee

This comment has been removed by the Moderator

mruble

jim2011 said:

Sometimes its the meds talking for me
Its 8:15AM Central Time and I just took some vicodins and valium so until they kick in I may be feeling what reality is all about for me and I already know that I am far from normal. I looked up London, Ontario on the map and see that from my home in central Minnesota, I am closer to Red Lake, Ontario than you are. I fly into Trout Lake just east of Red Lake for walleye, northern and lake trout 2-3 times per season. I was not able to go this summer for the first time in 26 years. Maybe living with cancer is all about short term goals but I plan to be jigging for bigg pike when the season opens in mid May 2012. Thats the long term goal for me. The short term is to finish insulating my work shop and then building some woodpecker houses.
Jim

Central Minnesota
Hi Jim --
My husband and I are in St Cloud so I'm guessing you aren't far from us. It's nice to meet someone else from the area, though I wish it would be under different circumstances. Another EC wife and I get together monthly - our own little support group of sorts. If your wife would be interested in joining us, she would be very welcome! It's our little safety zone where we can openly talk about our role as caregivers. If you like more information, please let me know.
Mary
Caregiver to Chad
Diagnosed IVa in Oct 2009 at 43 years old

Joel C

mruble said:

Central Minnesota
Hi Jim --
My husband and I are in St Cloud so I'm guessing you aren't far from us. It's nice to meet someone else from the area, though I wish it would be under different circumstances. Another EC wife and I get together monthly - our own little support group of sorts. If your wife would be interested in joining us, she would be very welcome! It's our little safety zone where we can openly talk about our role as caregivers. If you like more information, please let me know.
Mary
Caregiver to Chad
Diagnosed IVa in Oct 2009 at 43 years old

I hear you Lee
I use to read books all the time. Up until a year ago I would be starting a new book on American history every week or two. Now I can’t read a book or even a magazine article, I just have no interest.

In regard to how I feel I would say I never feel good, once in a while I guess I feel ok. In general I almost always have a feeling of being unwell. I still have significant pain from MIE but have gotten used to living with that. I hear people I work with complain about a sore foot or knee and I just smile and keep to myself and think if they only knew.
Joel

jojoshort

unknown said:

This comment has been removed by the Moderator

Sherri has a good point
Keeping interest in something, like building birdhouses or perhaps even a little artwork or even a particular series on TV--something to give you a sense of accomplishment and to take you away from thinking about the disease helps with daily quality of life.
Steve loved watching silly Addams Family reruns to help keep it light. It worked, and he worked on his painting always.
Push, yes.
Jo-Ann

jim2011

chemosmoker said:

How I "feel" and then some...
Most days, I can relate to exactly how you feel. I have a general feeling of malaise, sickness, of not being okay. Just a weird cloud of 'there's something wrong' so if I had never been to a doctor, I would KNOW instinctively that there is something amiss inside of my body. Knowing what is wrong, I know what the feeling comes from, but it still doesn't fit the feelings most days. My pain may be around the area the tumors are pressing on nerves and vessels, and my lower back can hurt like I have a spinal injury most days, I know the palpitations are due to the tumor in my esophagus that has entangled itself around my aorta. I burp and belch all the time. Until I was diagnosed, Michelle started to think I had lost ALL of my manners I believe! The burping helps tremendously. I love a good burp, but sadly I always taste blood when I do burp, unless it is after eating. My tumors are malignant and I am loosing blood from my stomach. I am anemic and try to take iron. That hurts, and helps. Otherwise I am hot/cold all the time. It can be 90 in here and I am shivering, or 65 inside and I am sweating.

I find I do BEST when I am distracted by doing things, like taking a hike or a walk, or into a project, as those are the ONLY times I feel "normal". Otherwise I haven't felt normal since shortly after being diagnosed. I will now ramble about all the other things not in your direct question, to explain further:

I get nausea at random times after taking a full dose of pain meds. It is just the meds reacting with my stomach. It passes or I eat handfuls of Cheerio's or anything salty to get past that. I have not had any vomiting nor have I ever taken the Ondancetron that they prescribed for me in the beginning. Having done NO chemo or radiation, I have had no changes in taste, no mouth sores, no tiredness beyond what I describe as the cancer's metabolism robbing me of mine. I eat almost everything I used too still. Sandwiches for lunch, eggs and ham and cheese for breakfast, the normal three main meals, although smaller portions as my stomach is 1/3 tumor now, then I eat about five (or more) smaller "meals" with cereals, lasagna, stir-fry, lots of yogurt, tons of cottage cheese, cheesecake and cheese fridge pies with fruit and freezer pops like they are going out of style. I do NOT watch my diet, my sugar intake or anything of the sort. I am eating to stay alive, literally. With no feeding tube, it is up to me and my mouth to do the job! I am trying to at least KEEP my weight the same week to week, or go up whenever possible. It is a workout as I can eat 6000 calories and not gain a pound. I have avoided dry bread, steak, and things that I have eaten and had any problems with. Watermelon is on the "no-fly" list as we jokingly call it. I add to the list as I need to, but I haven't had a problem swallowing since early July. I chew VERY carefully and eat the same comfort foods for the most part, although the list is long. I avoid anything spicy like chili or spaghetti and the like. I also do NOT eat at least an hour or more before laying down, lest I pay for that dearly with acid reflux from hell.

I sleep at night, some, trying to be normal but it is rarely like it used to be. With the reflux and pain, I am up too much and never get past 4-5 hours on a good night, and THAT is with a wake-up every 1.5-2 hours on average. I sleep better during the day, when I CAN nap. That's when I catch up, usually when my body gets tired enough, and I will lose from several hours to most of a day to sleep then. I sleep better on the couch in the living room than I do trying to sleep at night in the bed. I still "go" to bed every night, between 12-2am, but as above, it is not restful. I wake up feeling horrible if I ever sleep more than 4-5 hours at night I have learned. And that's with the wake up every so often. I am up early. I have gotten used to that now.

As for how I "feel", there is NO way to state it OTHER than pain. I am constantly "dosed" on Oxycontin and Oxycodone. I take a baseline of about 240MG of Oxycontin daily (80MG every 6 hours now) and then 30MG fast-acing Oxycodone as needed, which has been as much as 6 times a day on a bad day, and 2-3 times a day on a great day. Waking up, taking a shower, those are the times I take it without fail with breakthrough pain.

So to try and state how I FEEL, without pain factored in (or out), would be impossible. I am granted a 1-3 on the 0-10 pain scale when the meds are working well-I count that as a miracle. Having run out of meds twice due to pharmacy/doctor issues, I KNOW what the pain is like when it goes untreated. The withdraw is 1000 times worse than the pain, so that is avoided. Since Hospice has been involved, that has not happened and I supposed it will not again, God willing.

Thanks for the topic, Lee. I am curious to see all the answers! That is how I feel. Most of the time.
-Eric

eating
Lee, Do you find yourself eating more and more and sweating as the cancer metabolism demands foods and energy? I have eaten boxes of freezies and popcicles in an evening and still was losing weight. I would have a huge breakfast and then end up eating my lunch on the way to the office! Crazy thing. Sit and sweat while in an airconditioned house. As you may know, I did the chemo/radiation/surgery and felt like crap over the winter but I think the chemo really did help fight the symptoms to the point that the tumor shrank and died. I can eat just about everything now and am trying to cut the sugar out of my diet. I read your posts and find you to be a very smart and thoughtful guy. You are probably a type A personality type. I relate to your feelings of quality vs. quantity of life. You have thought it out and discussed it with people you love and love you back. I respect that. Between you and me and we have never met or even really related much on this board...I would like for you to reconsider chemo. There, I said it. I should mind my own business but anyway it is out now.
Personally, I feel guilty to lay in bed much past 6AM. I don't know why that is, as I can easily keep up with my little real estate deals and other agents who I know don't even answer the phone till 10AM. I am a strange person even when I am not on drugs. I thought that I was going to die last winter and sold my truck and my hoard of silver. lol
Jim

LilChemoSmoker

Joel C said:

I hear you Lee
I use to read books all the time. Up until a year ago I would be starting a new book on American history every week or two. Now I can’t read a book or even a magazine article, I just have no interest.

In regard to how I feel I would say I never feel good, once in a while I guess I feel ok. In general I almost always have a feeling of being unwell. I still have significant pain from MIE but have gotten used to living with that. I hear people I work with complain about a sore foot or knee and I just smile and keep to myself and think if they only knew.
Joel

Hoping there was a "fix" found today.
Lee,

As I sit here in concern for your symptoms along with this post and several other posts I have read from you, I can't help but wonder if the fix was found with your sweats, chills, edema, irritability, lack of tolerance to the sun, ect...ect... Though I wouldn't wish for you to have thyroid issues, all of these symptoms do fit hypothyroidism. Waiting to hear what the fix is for your symptoms.

Regards,
Michelle