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Mike
dav1965
Member Posts: 26,540 ✭✭✭
If you would send me a list of the e-mails of people who harass you. I would really be interested in that.
Hope all is doing good. Let me rephrase that i hope things are going the best they can for you under the circumstance.
Hope all is doing good. Let me rephrase that i hope things are going the best they can for you under the circumstance.
Comments
How much Morphine ER do you take at a time and day? Also how much Oxycodone do you take in a day?
Oxycodone 30 mg is a little much to be taking at 1 time. I would break it down and then you have more hours with pain medicine in it. Or cut it in 1/4 and you have 4 pills 7.5 mg a pill.
However i do not know how much pain you are in and if this is a good idea or not. It just depends on how bad you hurt.
Why are you having withdrawls? Did the doctors say you do not need any more pain meds or did you?
I will tell you now that you are probably going to be in pain the rest of your life. I had Cisplatin for chemo and it messed up all my joints. Now i am getting ready to have both knees replaced. I go Wed to get the date for the surgery.
Hopefully i am wrong and you do great.
If you can call me tomorrow at 252-343-9471 I have some ?s i would like to ask you.
If they did not give you anything i will go to UNC and get some for you.
Also i had massive radiation almost 2 times the recommended dose. Thats why they killed my saliva gland, thyroid gland and my pituitary gland.
Underneath my chin is hard as a rock. They told me that i was supposed to massage it so it would break up everything.
If you need the slave let me know.
As long as you hurt you are ok. When you take them to get high or feel good then you have a problem. I sometimes will skip a day just to see how bad i feel.
Prayers asked for you and yours.
Prayers David
I looked through a couple pages and i did not see anything about so i thought i would ask.
Prayers from here. David
He told me the book would be about 1 inch thick with so many variables it would be useless.
After about 18 months my cancer doctor asked me if i would talk to some patients about what to expect. I sat down with 2 surgeons and they told me how to word things and coached me some about 2 hours worth. I talked to about 15 patients and everything was good.
Then i had a 2 patients out of 3 that refused treatment. I had less than 10% chance of making it. At least 8 surgeons turned me down to operate on me. I found a 32 year old at UNC that would do it.
He told me the only thing i had going for me was that i was in great shape. Everything else was bad. When i would ask for odds on making it he would not even look at me. He would look at the floor.
The people that refused treatment 1 was a stage 2 patient about 60 he could have made it i think but he would not try.
The other was an out of shape stage 3 alcoholic and he would not take treatment either.
I took it personally and blamed myself for them not trying and dying. If i would have painted an easier picture they might have tried to make it.
I told them that every treatment is different and that they were lucky that they were caught early. I told them a little of what to expect.
The doctors told me later that they refused treatment before i talked to them and that i was the last hope they had.
It was to much for me. I did not want to lie to patients and tell them it was a piece of cake when they were getting ready to go to HELL and back. So i just told them i could not do it any more.
I just do not understand someone not fighting to live. I have never quit anything so i never thought of quitting.
So Mike what i am trying to say is help all you can but understand no matter how hard you try you do not have control of anything. Also you need a release to let some pressure out.
About 18 months after i was diagnosed with cancer i talked to a psychiatrist about 6 times. I was having a hard time with my wife working and me sitting at home doing nothing. I felt like a burden on my family. I was used to working 60 to 100 hours a week and now it takes me 1/2 a day to vacuum the house.
It was like cancer eating me alive again. All of it was just in my mind. My family could care less if i worked or stayed home. I just felt like i was a bum because i was raised to take care of my family.
So if you need to talk to someone there is nothing wrong with it but you will need a relief valve because no one can beat what you are going through and help others in the process without letting some pressure out.
It is better than keeping everything in because you sure do not want to get grouchy and take it out on your loved ones. They will understand and not say anything but they are going through as much as you are and maybe more.
I know for my wife and i that she had it harder than i ever did.
Prayers for you and yours and if i was not so far away i would come and dance with the little lady. Prayers asked for her and her family also.
Merry Christmas to you and yours.
Too quiet. I know things are terribly difficult and I worry as do others. Give us an update whenever you're up to it. We care!
LIVE!
Have you tried Carnation milk or shakes as they are called. It is worth a try.
I just plain stopped eating. When i got wore out my wife would hook me up to a feeding tube while i was sleeping.
People do not know what it means to throw up for 5 or 8 hours at a time. Day after day. Your stomach feels like it has been hit about 20 times with a bat.
You are laying on a pallet that your wife made for you to keep you as comfortable as possible.
All you can think is if i do not eat or drink maybe i can get some rest or sleep.
You love sleep because when you are sleeping you do not hurt as much.
From my understanding of platin based drugs it seams to be hard on hearing and tinnitus.
My tinnitis did not come on until after i finished my chemo so i am praying for the best for you.
Prayers asked for you and yours.
When they operated they did that first then chemo/radiation then 4 or 5 more operations.
During my first surgery 15 hours they cut a nerve in my neck and got the cancer off of it and then reconnected the nerve or they scraped the nerve. I can not remember which.
Anyway about 3 times a week it would feel like a flash of lightning in my neck and ear. No pain medicine would ever touch it. I would have the worst earache ever. Pain would last up to 1 hour or 1 minuet you never knew.
I hurt so bad i prayed to God to please let me die. I even wished i could kill myself. If i killed myself would i get to heaven?
I went to my cancer doctor 3 times in a week before he did the ct scan and found the problem.
Medicine did not help the pain but made the nerve heal itself a little faster.
I take 60 mg of Morphine ER in the mourning and 30 mg at night. During the day i take between 30 mg to 60 mg of Oxicodone. It depends on how much i did yesterday how much pain medicine i need today along with what i am doing now.
I have been to 4 doctors and they all say that there is nothing they can do but give me meds.
Am i addicted maybe i take my morphine everyday but i try and not take all my Oxycodone everyday.
If i am doing yard work then i take more. I can only work 2 or 3 15 minute periods a day. If i do more then i will be in bed for 2 or 3 days.
I also go every month to get shots in my butt, 4 in my back, 1 in my upper neck or lower head, and when they will give it to me in my knees.
I also take 3 different meds for depression and anxiety. About 1 time a year or 2 my wife will tell me my meds are not working and tell me to go to the doctor and get them changed or raised.
When i am having a really bad pain day my wife can tell and she will just do her own thing and let me relax.
I do all the house work except dishes and cooking. We use a dishwasher and i unload it. I just piddle around all day and take my time.
You seem to be on low dose medicine. I wonder if you need something stronger.
I try and keep my pain a 4. That is my goal. I never get a buzz from taking pain medicine. I just hurt a little less.
I hope they can get your pain under control that and nausea meds are the most important things you can do.
Oh 1 last thing pay attention to chemo side effects like hearing or what ever your chemo might have.
I was lucky enough to get tinitus out of it.
After that you will start getting better. How much better depends on something i do not understand. 7 years after my cancer i might be 30% of what i was before cancer.
You will have to figure out on your on what you need to do. It is important to push yourself during this time.
All of this will get you to your new normal. My new normal is about 30% of what i was maybe a little less.
When i went to sleep/passed out my wife would just plug me up to a machine and feed me. I could feed myself but i had to be sitting up. With the machine i could lay down and eat.
My doctor gave me pills to gain weight. I got to 225 pounds and the doctor asked me if i still take it and i said yes. She asked me why and i told her you keep giving me prescriptions for it so i take it. LOL She told me to not take anymore.
I weigh 195 now. Sadly its not all muscle anymore.[:(]
Mike 1st thing please stay on top of your pain with meds. Hurting does not help healing it does the opposite.
I am not suggesting taking enough to get high. Just enough to keep your pain at a 4. My goal is a 4 yours may be higher or lower.
Also do not get upset or annoyed if you are not getting well fast enough. Everybody has a different healing process. Believe it or not its going to take longer than you want or think it should.
I am 7 years out and i can work 45 minuets a day. Work 15 and rest 1 hour. I can do that 3 or 4 times a day. Thats it. When i over do it i am in bed or the recliner for 2 or 3 days and the pain is barely bareable.
Push yourself but not to hard and do not expect things to happen very fast. You are using a different clock now. Your body and mind has been through more than you ever thought was possible.
Why dont you ask the physical therapy for a few exercises and start on them at home. They should be willing to show you or print you off a paper on how to do it.
If you can go up just 1 more time every week you can see improvement. Just do not go crazy with it. If they do not want to show you anything try different things at home and increase gradually. You are not in a sprint race you are in a marathon.
Ask Makilia for advice. She knows more than us. Sorry i messed up her name. My memory sucks now.
Prayers asked for you and yours.
LIVE!
When i was in my teens and early 20s i would fight at the drop of a hat just for fun.
Going through cancer was by far the hardest thing i ever did. Not counting all the pain, throwing up for days at a time. Sleeping on the floor next to the commode. I had over an 80% chance to die.
What hurt more than anything was laying in bed and my grand kid asking why i do not want to play with him anymore. When my wife saw my tears she rushed him out of the room. They had a talk with him then. He was 5.
Then there was more than a few times i woke up and my wife was not in bed and i would wobble into the living room and she would be in their crying. That killed me when i would catch her crying. I had never seen her cry before that and i was with her when her Mom die.
And then their is my daughter. On the way to the hospital when i was having my first surgery that was 15 hours and 4 surgeons i was in a coma for a few days my wife told me Mandy my daughter was lost and she would be here in a little while.
Come to find out over 2 years later i found out she was in a wreck and totaled her car and nobody wanted me to be worried or upset.
For someone to say such things about a death squad when there are at least 2 people up here that i/we know of that are fighting for their life is beyond comprehension to me.
However i do not wish what we/you are going through on ANYBODY even people i do not like. I would love to be in the same room and try and beat them into understanding though.
From your post i know you do not mean what you said. You were upset and everyone knows that. You are in a tender and tough place now.
Prayers asked for you and yours. If you ever need someone to talk to that has walked in your shoes give me a call. It can be anything from guns to cancer i do not mind. Post up here and i will give you my phone number.
Brother all you can do is take one day at a time and fight like hell and pull the cart that was given to you. How you pull the cart in life is what matters.
When i die i know my friends will say that i was a great friend and one of the hard headest and toughest son a bitches they knew.
When all is said and done i did it my way. Right or wrong i lived by one rule. I asked my Dad one time for advice and he said life was easy.
When faced with any decision there is right and wrong life is easy do whats right. He told me that is all i need to know about anything. Just do what is right.
How can you go wrong with that?
This pain meds work for me. We had to go through a few different trials to find what worked.
I can get any pain med i want without a problem. For example i tried Dilauded. I can not stand that. When i take that it makes my heart race and i feel funny and i do not like that feeling.
Ask them to try and change your pain meds. They will not be mad just tell them what you are going through with them.
I can not tell i am on pain meds until i forget to take them in the mourning and then i am miserable.
Talk to your doctors.
You are in a tender spot right now. Do not let one or two (THINGS or PEOPLE) bother you. You have bigger problems than what some person think.
I have never seen you put anyone down or say anything bad about another person up here.
Do not give them the satisfaction of running you off.
Prayers asked again for you and yours. You need to stay focused on your next goal.
Also i do not care what anyone says about me. I have been like that my whole life. However they will not say that to my face. LOL
If i can give you or anyone else any advice that makes 1 day better for you or anyone else it is worth it.
If you would rather discuss this in private tell me you sent me an e-mail because i do not check my email every day. I have over 35,000 unread e-mails. I just dont check them. Everybody i know just text me.
Actually i like helping someone who needs it. Kind of like you helping the kids that are on the same journey you are.
Also i think after you get done with this ordeal you will help other people going down the same road you went down.
I had radiation in my head and neck and under my chin is hard as a rock because i did not massage under my chin and break it loose.
Also on days when you do not feel like eating try carnation or ensure breakfast drinks. I lived on them for about a year.
I bought mine through the cancer place and it was 8 dollars for 24. I could not eat or drink i had to use a port that went in my stomach.
As always prayers for you and yours.
I am 7 years out and things are fading. I can not remember all of the details now. If i think hard about it i can remember most things. I had forgot about the tatoos until you mentioned it the other day.
I did not walk across the finish line i crawled or was dragged. It does not matter how you get across the finish line as long as you get across.
You are still going to have really really bad days and you will think that you can not go on. However you will get through them days the same way you got through last weekend.
Just keep on fighting and putting one foot in front of the other.
There is nothing for you to be ashamed about. You are fighting for your life. So you can not do something for 4 or 5 days and need help to get through a week or weekend. There is no shame in that.
I swear i honestly believe if it was not for my wife i would have died. I only had 3 doses of chemo and radiation every day. My chemo was Cisplatnum.
Every time i got chemo i slept in the bathroom for about 5 days. After each chemo the bathroom stays got longer. I was so wiped out my wife would plug me into a feeding machine while i was passed out.
I refused to eat or drink because i did not want to throw up anymore. So my wife just plugged me into the port in my stomach when i was asleep or passed out.
You will get through this because you do not what your body will or can go through and survive.
However bad what i went through my wife went through what i went through and worse. Please let them know how much you appreciate their help and love them. It never hurts to let them know even in your darkest days you love them.
Prayers asked for you and yours. David
When i cancer the first thing they did was send me to the dentist to see what kind of shape my teeth were in.
They pulled 4 teeth and none of them had a cavity. That tore my nerves up. They told me that if i had to have a tooth pulled in the future it would be really serious because of my weekend jaw bone from radiation.
Then when my hair started coming out that bothered me also.
It makes no since except for vanity that losing 4 back teeth and a little hair bothered me more than cancer.
Prayers hoping you get better quick so you can have some fun before your next round.
As always prayers for you and yours.
Since i had head and neck cancer i was automatically approved all i had to do was wait 12 months.
Im guessing that might be a good idea for you to try.
Prayers for you and yours.
When cancer started i had over 95,000 dollars and now i have almost 6,000 dollars. Fighting cancer is crazy expensive if you have a job or some money in the bank. I am still paying IRS and NCIRS for getting my money out earlier. I am down only owing to 6600 dollars now.[V]
I had disability for exactly 3 years before it was cut off. After it was cut off i applied again with letters from 2 doctors saying i would never be able to work again.
I was denied again so i appealed for a hearing and hired a lawyer. We went to the hearing in front of the appeal lady and had about a 2 hour meeting.
The lady went over everything with me and told me that she does not think i will get disability from this hearing but appeal it and go to court and i would win. She told me the judges have more leedway to grant disability. Also she told me it would take 8 months to a year to get in front of the judge. So that would make 2 years waiting to get disability.
She told me that she can not approve disability and that she would have to bring the case to her boss and see what he said. My lawyer called the next day and i was approved.
It is a long road to get disability. It is easier for someone that has no skill than someone who has a degree. I was an electrician and they were saying i could get a lesser job like a wal-mart greeter.
Have patience and good luck.
You need to find a physical a physical therapist who treats vertigo.
My Mom has suffered from vertigo her whole life. She had 1 session and it fixed the vertigo.
They position your head several ways to put the rocks in the right place and it fixes everything.
They might have to wait until your treatment ends to give you that.
My Mom wishes she had it 40 years ago. I only found out about it in December.[:(]
You might have a chance to work again only 1 person or God knows and he is not telling.
I can still remember asking my cancer doctor my chances and he looked at the floor and said less than 10 percent. He would not look me in the eye and tell me it was that bad. Lucky for me i am a fighter. I just will not walk away from a fight. That is what you have to do.
There were more days than i care to tell that i laid on the bed and prayed to God to PLEASE let me die i hurt so bad.
I take 3 meds for depression and 1 for anxiety. It does not bother me that i do. I need them and i know it. I am depressed i can not work, i cant play softball or football. Everything i like to do is off limits.
When the kids come over for me to work on their cars i have to tell them what to do because it will hurt to bad for me to do it.
I think you need a little help with depression and if you are taking something tell them you need more or something else.
One thing i have never thought of hurting someone else or me. I am in the gray area if i hurt myself will i get in heaven.
I have been snappy or grouchy with my wife some and she will just tell me to take some medicine or to tell my doctors i need more medicine that what i am taking is not working.
However i never raise my voice or cuss at my wife. When i am frustrated i have a tone in my voice she says. I am very very lucky i have a great wife. She is better than i deserve anyway. I tell her every time i text her, call her, and at least once a day that i love her along with kissing her every day at least once.
Your girlfriend and niece knows what you are going through. Just tell them daily thanks for the help, and that you love them and try and be nice to them.
She knows dealing with patients that things are very hard for you right now but all ladies love hearing i love you.
Figure out your pain meds and depression and that will help you a lot. When i told my Mom and Dad that i had cancer and that it was bad we were sitting on the front porch of their house in rocking chairs.
My Dad asked me what i was going to do. I asked him what he meant. He asked me if i was going to quit or fight. I asked him if he has ever seen me quit. He told me no and that was all that he asked me that day. Mom already knew i had cancer i was just letting Pop know.
You will just have to live life the best that you can with the cards you have. Thats just the way it is.
So get the pain under control and work on the getting the depression under control and live the best life you can.
When i am in pain and in the public and people bother me or act stupid i have a very hard time not saying anything to them. That is something else you might try and be aware of.
Prayers for you and yours.
Then later in the day around night i will read for 2 or 3 hours or more. I have found if i take pain meds after 2 pm i have a very very hard time going to bed and just lay there.[:(]
You just have to figure out what works for you.
1 thing about listing to music it makes me feel closer to my dad. He would get his guitar and just play with the radio or his reel to reels.
No ones knows what the new normal will be because everyone goes through it differently. After i was through with my cancer i asked my doctor why he did not tell me about some of my side effects. He told me he could write a book and not list all of the side effects you could have.
At the time i was going through my cancer i was 45 and in super shape. Working 60 to 100 hours, running and lifting weights. Im 53 now and i am 40 pounds heavier than when i got sick and its not muscle. It is my new normal.
I beat cancer but now i have osteoarthritis, which caused me to have both knees replaced. I have it in my hands, back, neck, and left shoulder. Plus my knees still hurt. Also i have tinnitis and Addisons disease.
After you finish your treatments wait about 18 months and that might be your new normal. I will not lie to you it will suck. I was/am like you in that i think people on disability is wrong. I was raised to take care of my family not get handouts.
However like me, you are not playing the system to get something when you can work. When you can not fish for more than 4 hours and have to stay in bed for days afterwords you need to be on disability.
Mike if i am not mistaking you can apply for disability and go back to when you found out you had cancer. From when you had cancer add one year and you should get pay from then forward.
So you should get a nice check.
You did nothing to cause your situation it is just a part of life. I know where you are in your mind because i have been there. Its a mental hurdle that you HAVE to get through.
If you want to talk or e-mail post up here and i will give you my information.
You Won My Give a Way For the Mousepad
I would Like to get it to You
prayers For You Pal
Woody
At times i wished i never got married because of what i was putting her through. She would never say it bothered her but it hurt me to the core.
I too had to get fluid every day for about 3 months. Nothing would stay down. I would get 2 bags everyday or be put in the hospital. If i was to stay in the hospital my wife would sleep in a chair so i rode 2 hours a day to get my fluid.
On your pain medicine if you are still hurting see if you can get something every 4 hours. If you need it you need it. It is crazy to hurt when you do not need to.
When i was sick i had to go 1 year without any income before i could get disability. I lived on my 401k. I was stupid and invested 90% of my money in 401k instead of stocks. I never planned on getting sick and needing the money. Now i get to pay the IRS and NC IRS 249 dollars a month.
I also know how changing the new year sucks because in January my meds are around 275 a month and about September it drops to about 80 a month and thats nice.
Do not be ashamed of depression. I take medicine for it and its no big deal. Without it i get mad really fast. I take 3 different meds to get me right in the head.
I have never wanted to hurt myself or others i would just sit at home for 3 weeks at a time because i just did not feel like going outside. Its hard to describe how being depressed makes you feel.
My meds help a lot. My wife will tell me to talk to my doctors about me being moody, or short tempered when i think i was doing nothing wrong.
You need to accept that this is your NEW normal for a while. I understand you wanting to help others especially the kids. However their will be a time when you will just need to help yourself.
Please do not push yourself to hard when YOU need some rest. Take things easy and do the best you can.
I tried to lie to my wife and say i was not in pain but she could see it in my face. I would look in the mirror and would not see it.
She will come home some days and say you have a bad headache dont you. I would say yea but how can you tell. She just knows me so well.
Prayers asked for you and yours.
Ros
Prayers for you and for your care givers. A lot of people do not realize that the care givers go through as much as the person thats sick if not more.
Prayers for you and yours Mike.
may all your enduring during this time will have a good out come for all
Back in the late 1990's my dentist noticed a white patch on the right lateral part of my tongue and had me see a specialist about it. It was surgically removed at the time. They called it Leukoplakia.
Ever since then I've been going back for check-ups a couple times a year. They worried about it becoming cancerous someday. The doctors sometimes took small pieces out under local anesthesia for the lab to look at. The pathology reports always came back saying it was either mildly, or moderately, or severely deformed cells. Ominous news huh? Sometimes they would electro-cauterize the area to kill anything bad off. Have you ever watched and smelled smoke coming out of your mouth? It tends to sound a bit like bacon and smell like burning hair. Sometimes they fried it off with a laser. Same smell.
This went on for a decade or so.
On Dec 27, 2010 they took another little piece for a biopsy. Dec 29th the doc called with the results. Cancer. My world changed.
On Jan 12, 2011 it was cut out with good, clear margins. I went back to the every couple months follow-up routine again.
In a little over a year it came back.
On April 9, 2012 it was cut out again. This time they went deeper; maybe a golf ball's volume of my tongue was removed. My tongue is now connected to my lower jaw on the right side. I have lost some flexibility with it but can still play trombone and trumpet with my school bands. Once or twice I caught a glimpse of my wife (an RN) crying or breaking down to a friends when she thought I wasn't looking. That hurts me more than the biopsies do.
On February 17, 2015 there was another biopsy. It showed nothing "bad". I was told to come back in two months.
I've been doing that ever since. Now the intervals have been stretched out to four months between check-ups. I just saw him again last week. Doc says it all looks as good as he's ever seen it. Vigilance is still our watchword. Life goes on.
But sometimes it feels like a time bomb is still ticking. . .
Prayers sent.
You know this disease too well. You know me too well and you know what constantly runs through my mind just as I know what runs through the mind of others touched by cancer, you included. This is why we each feel so deeply for others touched by this horror.
You're so correct. Here I am in pretty good shape but every twinge or new pain rings the alarm. Every little pain could signal the beginning of the end. I try not to dwell on the subject but it's always there. What's worse is knowing what I'm doing to those I love and being helpless to make things better.
Appointments with my doctors are stressful beyond description. Each appointment is literally a life or death situation. Will I remain in remission, or is my run of luck over? I attempt to be a good patient but it would be easier to face a firing squad. At least there would be finality. Somehow I think those not walking this path cannot comprehend that I'm telling the truth.
You mention stages. I have to wonder. Is it better to be going through hell with at least a slim chance of recovery, or is it better to be temporarily feeling pretty well, but with no chance of being cured? I don't have an answer to that one.
Then the other part of this disease... Whether terminal or curable the appointments, the tests, the procedures, the surgeries, and the stress will never end until we end, be it because of the disease or because we won the battle and reach old age. Cancer will always be that sword dangling by a mere thread above us.
Mike, I can't tell you to fight or continue to do battle as neither term really fits. Maybe it's more correct to encourage you to continue to deal with the situation as it arises. When one thing fails to work or the disease presents yet another problem, then you must somehow figure a way to overcome. You eat when you can't eat. You hydrate when you can't hydrate. You overcome the pain even when it's gone far beyond pain. You do this or you die.
Then again, who am I to give you advice? My road has been easy. All I know for sure is that there were others in chemo at the same time as I who for whatever reason weren't able or didn't force their bodies to do the very things that seemed so abhorrent at the time. It's not easy to force food down a body screaming to reject it. It's not easy to swallow one more glass of liquid than a body can reject. Either one's mind wins and forces the body to accept or the body wins and thereby kills itself.
Mike and others here, I stand in awe of all of you. How you've coped and how you've won your individual battles is inspiring to say the least. Every time I feel sorry for myself, all I have to do is look toward the many of you and realize how easy I have it. Thank you all.
LIVE!