Jerry's January 23 update

jgwright

Well, looks like I "jumped the gun" on my surgery date. February 16th is a pre-op meeting with surgical team in Seattle, including a CT scan, and surgery is actually scheduled for March 2. My doctor is a busy, busy guy. So. That's THAT news.

Finished the treatment course on the 17th, and now I'm just trying to eat and have food stay down. Yerf... As I said in another post, stuff tastes kinda "chemical" and it burns going past the tumor. Joy.

Oh well. Asked my oncologist about Marinol in an email, but haven't heard back yet. (Tomorrow, I hope...)

--Jerry

chemosmoker

Jerry,
Glad you are doing
Jerry,
Glad you are doing this with such gusto! You are a trooper and you will be one of the one's that makes it!!!



God bless

Eric

JReed

Hey Jerry!
It is wonderful to hear from you - we think about you everyday! Don is about two weeks behind you and he's doing pretty good - haven't reached the burning point (and I'm hoping he doesn't experience that).

So glad you are doing fairly well - the surgery will be a huge milestone and we are gonna be watching for news from you all the time. Does your wife post at all on here so we can get updates on you as you go through the surgery stage?

If you don't get the marinol script soon enough - find someone who tokes and take it from there - anything beats the burn, pain, and nausea. If you don't want to smoke it - read up on how to make butter with weed and then bake some cookies or use the butter in a food you can eat - you'll get the same effect. I would not make brownies with it - because that may be a little harsh to swallow - but the butter would be fine and the smoke is way better than that.

Hugs,
Judy

Unknown

This comment has been removed by the Moderator

jgwright

JReed said:

Hey Jerry!
It is wonderful to hear from you - we think about you everyday! Don is about two weeks behind you and he's doing pretty good - haven't reached the burning point (and I'm hoping he doesn't experience that).

So glad you are doing fairly well - the surgery will be a huge milestone and we are gonna be watching for news from you all the time. Does your wife post at all on here so we can get updates on you as you go through the surgery stage?

If you don't get the marinol script soon enough - find someone who tokes and take it from there - anything beats the burn, pain, and nausea. If you don't want to smoke it - read up on how to make butter with weed and then bake some cookies or use the butter in a food you can eat - you'll get the same effect. I would not make brownies with it - because that may be a little harsh to swallow - but the butter would be fine and the smoke is way better than that.

Hugs,
Judy

I Love My Wife but...
I can't get her to come on this board. Oh well. Howsomeever, I bought a little netbook that weighs only 2.4 pounds which I will be taking with me to the horsepistol. So assuming any brain activity at all, I shall be posting.

--Jerry

jgwright

chemosmoker said:

Jerry,
Glad you are doing
Jerry,
Glad you are doing this with such gusto! You are a trooper and you will be one of the one's that makes it!!!



God bless

Eric

Thanks Pal
I plan on spending the next couple of months writing a book for one of my classes. I know that the mind/body interface is super important, and so I try for positive everything. I'm so happy to see your post as well, my brother. Fake 'em all out. Live as long as you want, for you and Michelle.

--Jerry

jgwright

unknown said:

This comment has been removed by the Moderator

Various and sundry...
I'm not sure if it is a PET/CT scan or just the CT scan. As to food, it doesn't taste metallic. There are chemicals in most processed food, and I seem to be sensitive to some of them now. I can even smell them.

Peaches and greek (more protein) yogurt are edible. Jello too. Mushrooms.

The marinol will be showing up tomorrow. Spendy stuff. Even with my insurance paying for part of it, it is $175.00 Of course, this is a new year and so I have a $100 copay to start with, which means it's really "only" $75.00. And as for why?

Nausea. I was trying to eat some oatmeal this morning. Three small bites. Okay. Next bite... Rush for the bathroom. Not because it hurt, but because of overwhelming nausea that continued well after everything was gone.

--Jerry

JReed

jgwright said:

I Love My Wife but...
I can't get her to come on this board. Oh well. Howsomeever, I bought a little netbook that weighs only 2.4 pounds which I will be taking with me to the horsepistol. So assuming any brain activity at all, I shall be posting.

--Jerry

Netbook
Sounds like a plan, you know we all will be thinking of you everyday.

Hugs,
Judy

Tina Blondek

jgwright said:

Various and sundry...
I'm not sure if it is a PET/CT scan or just the CT scan. As to food, it doesn't taste metallic. There are chemicals in most processed food, and I seem to be sensitive to some of them now. I can even smell them.

Peaches and greek (more protein) yogurt are edible. Jello too. Mushrooms.

The marinol will be showing up tomorrow. Spendy stuff. Even with my insurance paying for part of it, it is $175.00 Of course, this is a new year and so I have a $100 copay to start with, which means it's really "only" $75.00. And as for why?

Nausea. I was trying to eat some oatmeal this morning. Three small bites. Okay. Next bite... Rush for the bathroom. Not because it hurt, but because of overwhelming nausea that continued well after everything was gone.

--Jerry

Hi Jerry
It is nice to meet
Hi Jerry
It is nice to meet you and welcome to our EC family. I was a caregiver for my dad, Ray. He was a stage IV ec patient, inoperable, had 6 weeks of chemo and radiation, tumor shrunk...he went into remission...made it a year from dx...a month later the beast reared his head in my dad's liver bile duct. Had stent put in esophagus and liver bile duct....then the beast decided to take over my dad's liver. End of journey. Dad suffered for 3 mos and passed away peacefully on March 9, 2010. You, my sir are lucky to be able to have the surgery. Surgery is the way to remove that tumor! Sorry you are having trouble with the nausea. There are anti nausea pills available, just have to make sure you take them daily before the nausea sets in. I agree with William, who by the way is one of the most wonderful guys here! The marinol will help to increase your appetite, not stop the nausea. Hmmmm....something to think about. Glad you only had to pay $75 for it! Hope it helps. Greek yogurt is a great way to get more protein. Will be thinking positive thoughts and praying for your upcoming surgery. Keep in touch. Tell your wife she is missing out on meeting some of the greatest people in the world! Take care and take it one day at a time. We are always here for you.
Tina in Va

jgwright

Tina Blondek said:

Hi Jerry
It is nice to meet
Hi Jerry
It is nice to meet you and welcome to our EC family. I was a caregiver for my dad, Ray. He was a stage IV ec patient, inoperable, had 6 weeks of chemo and radiation, tumor shrunk...he went into remission...made it a year from dx...a month later the beast reared his head in my dad's liver bile duct. Had stent put in esophagus and liver bile duct....then the beast decided to take over my dad's liver. End of journey. Dad suffered for 3 mos and passed away peacefully on March 9, 2010. You, my sir are lucky to be able to have the surgery. Surgery is the way to remove that tumor! Sorry you are having trouble with the nausea. There are anti nausea pills available, just have to make sure you take them daily before the nausea sets in. I agree with William, who by the way is one of the most wonderful guys here! The marinol will help to increase your appetite, not stop the nausea. Hmmmm....something to think about. Glad you only had to pay $75 for it! Hope it helps. Greek yogurt is a great way to get more protein. Will be thinking positive thoughts and praying for your upcoming surgery. Keep in touch. Tell your wife she is missing out on meeting some of the greatest people in the world! Take care and take it one day at a time. We are always here for you.
Tina in Va

Marinol and nausea
Hi, Tina!!!

According to my research, Marinol is a specific against post-chemo nausea. So I'm curious as to why you think it won't work. The standard anti-emetic, prochlorper, doesn't work for me, and y'know, it can have some horrific side effects as well as being a drug used to treat schizophrenics. (The voices in MY head tell me that it's not working...)

So, having some strawberry yogurt this morning, and thinking of you all.

--Jerry

sandy1943

Glad the surgery will be
Glad the surgery will be soon. My wait from the end of chemo until surgery was very good. I felt almost well. The anti nausea drugs worked for me. I was one of the fortunate ones.
Hope the Marinol works for you, Sandra

TerryV

jgwright said:

Marinol and nausea
Hi, Tina!!!

According to my research, Marinol is a specific against post-chemo nausea. So I'm curious as to why you think it won't work. The standard anti-emetic, prochlorper, doesn't work for me, and y'know, it can have some horrific side effects as well as being a drug used to treat schizophrenics. (The voices in MY head tell me that it's not working...)

So, having some strawberry yogurt this morning, and thinking of you all.

--Jerry

Pot & Nausea
Jerry,

My Nick is a "recreational" pot smoker. Has been since his teens. We didn't get marinol, but I do know that the pot DID help his nausea issues post-chemo/post-rads. He still gets occasional nausea 4 months past surgery. And yes, pot still helps.

William mentioned marinol and mental agility. In my observation, marijuana will calm an excited person, but it will NOT dumb down the smart ones Like all meds, there is a period of "getting used to" the med. You may notice more lethergy initially, but is that really a problem right now? You need rest to mend and prepare for surgery.

Congratulations on getting a surgery date! I'm anxous for your good updates. It's lovely to have such an upbeat person such as yourself posting here.

Love & Hugs to both you and your wife

Terry

JReed

jgwright said:

Various and sundry...
I'm not sure if it is a PET/CT scan or just the CT scan. As to food, it doesn't taste metallic. There are chemicals in most processed food, and I seem to be sensitive to some of them now. I can even smell them.

Peaches and greek (more protein) yogurt are edible. Jello too. Mushrooms.

The marinol will be showing up tomorrow. Spendy stuff. Even with my insurance paying for part of it, it is $175.00 Of course, this is a new year and so I have a $100 copay to start with, which means it's really "only" $75.00. And as for why?

Nausea. I was trying to eat some oatmeal this morning. Three small bites. Okay. Next bite... Rush for the bathroom. Not because it hurt, but because of overwhelming nausea that continued well after everything was gone.

--Jerry

Marinol, Marijuana
I talked with Don's radiologist this morning regarding his thoughts on marijuana. He said he does not prescribe it but has no objection to use. He said it will do three things:
1. Stop nausea 2. Increase appetite and 3. Calm a person down. He also said like with any drug - it may not work the same for everyone but in general those are the benefits.

He said that at this point they just don't want the patient losing weight and anything that helps is fine with them. He said there are a lot of drugs for different things and they can prescribe those as needed but he is fine with the fact that if Don wants to smoke weed - go ahead and try it. They will prescribe marinol if wanted and needed. So far the ativan is working for Don - but like I said before, if and when he feels he would benefit from marijuana - we are definately good with at least trying it (I already know I like it!)

The radiation doc said it is also normal to begin to eat better at three weeks after radiation because likely the tumor is shrinking and then at about week 5 - the burning begins to kick in and sensation of hot and cold are noticeable. He said it's like a very bad sunburn only on the inside of you and just like when your skin gets badly sunburned - a hot bath hurts as well as an ice cube is extremely cold and causes shivers. Makes sense to me and again he stressed that not everyone has these experiences but it can be normal.

Their main concern is to get rid of the cancer and have the patient maintain or gain some weight at every possible opportunity because surgery takes a lot out of you and naturally there will be some weight loss for a period of time after that.

Hopefully, Jerry - your symptoms will be gone in a week or two and you can begin to eat again and get 'stocked' up before surgery. Keep on keeping on - we're all behind you !

Judy