diagnosed with lymphoma

Taking a camera with you might work for copying your records quickly and easily.
 
shoe said:
Nords if they ever catch you doing that you could be labeled a "difficult" patient....just like Elaine and Uncle Leo.:whistle:
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During my submarine sea-duty days we used to have to pass nuclear-weapons inspections whose success (or failure) depended on the quality of the medical records. I quickly learned the attitude of "trust, but verify".

If a doctor is offended by inquisitive patients then I move on.

Our neighborhood clinic is filled with residents. I'm only there once or twice a year and I don't think I've ever seen the same doctor twice. They're usually very very good with patients, and they almost never try to pretend that they're omniscient or omnipotent.

The specialists and the older guys, however... but I can understand how they'd burn out.
 
Under the privacy provisions of HIPAA people have the right to copies of their medical records and most records of their minor children. There are some exceptions, for example, your minor children's records for treatment which does not require parental consent, psychotherapy notes, and if seeing the records would endanger your life or someone else's life.
 
Martha said:
Under the privacy provisions of HIPAA people have the right to copies of their medical records and most records of their minor children. There are some exceptions, for example, your minor children's records for treatment which does not require parental consent, psychotherapy notes, and if seeing the records would endanger your life or someone else's life.
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This was in 1986-87 and when I asked why I couldn't have copies of the actual records I was told that he had given me all the info he was required to by law.

My son was 2 and the new pediatrician found that he had an undescended testicle and was referring us to a pediatric urologist. The previous pediatrician had never mentioned anything about it. Also, my son was full-term but only 4lbs. 1 oz at birth (insufficient placenta) and the nasty pediatrician accused me of smoking through the pregnancy and lying about it. I've never smoked. He was just awful.

I voted with my feet, found a wonderful doctor and both my kids stayed with him until age 18.
 
No one has refused any record I have asked for, some are more accomdating than others and the records contain information which they never tell you because to them it is not pertinent. For instance in my type of cancer being HPV positive can cause the cancer. The main cause of the cancer is smoking and drinking combined. Since I smoked and drank they never bothered to test me for HPV. The rub is that survival rates for HPV positive persons is higher. I have since requested that the test be done. Also for anyone that dosen't know there is a vaccination for young girls before they become sexually active which can prevent HPV and I believe some cervical cancers. I also heard today that a vacination will soon be available for young boys and prevent probably what I have absent the drinking and smoking. I had my daughter vaccinated years ago.

Freebird and Martha I printed out the sections you cited just in case anyone gives me grief.

Rich I tried twice to sign up for the google heath profile and both times I could not activate the account and it kept expiring. Perhaps they are experiencing some glitch. Sounds cool though and I'll try again.

I can't thank-you enough for the continued interest. Everyday I come to the forum to see whats new with the posts. I'm slowly becomming interested in what brought me here in the first place.
 
Ratface...thanks for keeping us up to date.....I hope this week is fantabulous and that you stay in good cheer :)
 
Was probably the bacon flow chart. I think I could win the Wednesday weigh-ins now as i lose about three pounds a week. Was at the primary Doc yesterday and the nurse says get on the scale. She weighs me and says "OH look, you lost ten pounds, how wonderful" I politely told her it wasn't all that wonderful. Had a nice long talk with my primary to the point where I said your other patients are going to get pissed to which he replied, "They know some day it will be their turn, let them wait." The guy opened up and shared some pretty personal deep stuff with me. We were talking about the book. "Why bad things happen to good people" I've yet to read it but may order it today? any opnions?
 
I bought a copy of the book, Why Bad Thngs Happen to Good People many years ago and gave it to a dear friend who had suffered a huge loss. I believe it was a little part of how she was able to go on.

IMO, it's really going to depend on what frame of mind you are in when you read it.
 
ratface said:
Was probably the bacon flow chart. I think I could win the Wednesday weigh-ins now as i lose about three pounds a week. Was at the primary Doc yesterday and the nurse says get on the scale. She weighs me and says "OH look, you lost ten pounds, how wonderful" I politely told her it wasn't all that wonderful. Had a nice long talk with my primary to the point where I said your other patients are going to get pissed to which he replied, "They know some day it will be their turn, let them wait." The guy opened up and shared some pretty personal deep stuff with me. We were talking about the book. "Why bad things happen to good people" I've yet to read it but may order it today? any opnions?
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So nice to have a good rapport with your primary doc. :) It makes all the difference in the world.
I have not read the book.
Just an idea...is adding a weight gain type shake to your diet an option for you?
 
ratface said:
Was probably the bacon flow chart. I think I could win the Wednesday weigh-ins now as i lose about three pounds a week. Was at the primary Doc yesterday and the nurse says get on the scale. She weighs me and says "OH look, you lost ten pounds, how wonderful" I politely told her it wasn't all that wonderful. Had a nice long talk with my primary to the point where I said your other patients are going to get pissed to which he replied, "They know some day it will be their turn, let them wait." The guy opened up and shared some pretty personal deep stuff with me. We were talking about the book. "Why bad things happen to good people" I've yet to read it but may order it today? any opnions?
Click to expand...

Hey, look on the bright side. This is not the best way to lose weight but it does work :) I've lost 10 pounds also, and it's about the only way I've found to lose weight.

Glad you can talk to your doc on that level, that's pretty unusual these days, and I think it's helpful for recovery. It's good to feel that you and your doctor are in this together for the fight, that you're not alone. Best of luck with your continued treatment, just visualize that you may be having a bad day, but those cancer cells in your body are having their worst day ever!
 
ratface said:
. Everyday I come to the forum to see whats new with the posts. I'm slowly becomming interested in what brought me here in the first place.
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It must be the ever changing avatars ! I've read the book "When bad things happen to good people " . It was okay . I'd get it from the library rather than buying it .Have you read any books or articles on the stages of grief ? Most patients I cared for with Cancer went through the stages of grief and it helps to know it is normal and ways to deal with them . By the way You are really doing great with the treatments .
 
ratface said:
Had a nice long talk with my primary to the point where I said your other patients are going to get pissed to which he replied, "They know some day it will be their turn, let them wait."
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Ratface,

This is indeed the reason I don't get annoyed when I have to wait extra long in the examining room. I know people in the other rooms may be living in fear and pain, and need extra time. "We are all 'temporarily abled,'" as a person who worked for me used to say (she had been partly disabled at age 27 by a stroke...)

How much longer is your chemo period going to last?

Amethyst
 
My initial weight loss was from depression. Now it's from soreness of swallowing and just overall burning when anything touches my mouth. Milk shakes and icecream are still pretty tolerable. Appetite is fairly low because everything taste like salt water to me. I was talking to the Radiation nurse and she said another patient had said that beer tastes like bananas? Sounds like the book isn't that good. I will check the library. I took a course many years ago on death and dying and I clearly remember the stages of grief. What a weird class, we took a trip to a cemetary once. Well I'm rambling. Meet with the chemo Oncologist today after my RAD treatment. Tomorrow is my second 21 day course of Cisplatin. Sit down, hook up and drain away. Mouth is taking a beating and I have 26 of these left. Talked a fellow who told me his tonsils are now only stubs. Saturday we drive the young son back to college for his first time living off campus. I'm going to miss him as the house will be to damn quite.
 
Ratface, glad to see you are checking in regularly with updates. Hopefully in 5 years time you will be dragging this thread back to the top to remind us that you have been in remission for that long. Hang in there, I know it can't be easy, but once you come out the other side it will all have been worth it.
 
You may want to try different flavors of popsicles, puddings and jello. You might be able to tolerate applesauce as well. Try soaking cereal in milk until it's soft and suck on mints/hard candies to keep your mouth moist.
 
I'm telling you, pistachio-flavored pudding from Jell-O! It's awesome (if you're into fake pistachio flavoring and green food coloring, which, apparently, I am)!

Or, you could cruise for the best milkshake in town.

This too shall pass, and you'll have a line on top-notch milkshakes to amaze and astonish your friends with. ;)
 
Urchina said:
I'm telling you, pistachio-flavored pudding from Jell-O! It's awesome (if you're into fake pistachio flavoring and green food coloring, which, apparently, I am)!

Or, you could cruise for the best milkshake in town.

This too shall pass, and you'll have a line on top-notch milkshakes to amaze and astonish your friends with. ;)
Click to expand...

Glad to see I'm not the only one into green food.:) A little whip cream on top and your good to go. I know there has to be some here that's into whip cream.;)

Thanks for all the updates Ratface. Looks like you are handling the situation very well.
 
Looks like the chemo always knocks me to my knees. Just a long day. Radiation first so I don't barf in the mask and then the 4 hours of infusion with the cisplatin. No barfing yet but nausea and just constant fatigue. Appetite horible again. I've been stocking up on the puddings, jellos, and icecream.Then Saturday driving from Chicago to Urbana and back with the usual shopping for stuff and helping out with the college apartment for DS. Last knight the neighbors were fighting in a language I don't understand around 3 AM and I got up at 5 am to start the college trek. I wish I at least knew what they were so mad at. Time for a quite night I hope?
 
If you share your jello with them, maybe that will make them happy and forget the reason for fighting. :)

I hope you get a good night's sleep darlin'....
 
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