Tom's chemo started today at the u of chicago

oriontj

We were both glad to see his Drs..Villifor and Campbell...they spent a lot of time with him as did the nurse in charge...explaining side effects etc...good they handed him the sheets...cause who knows what he remembers..me everything..

He has a brother to taxol and carboplatin....Dr. Villifor said due to his excellent response way over a year ago...she's really hopeful. That the biology of his tumor seems such that it responds...time will tell. But she did say many times in the first round of chemo the tumor continues to grow even with chemo and radiation.

I talked privately with Dr. Campbell to find out if he needs to be closer to home a different dr...not the one we saw last week...that I told you all about. He said definitely...so I now have his name on the back of Dr. Campbell's card with all his numbers including the pager...which he has on his pillow so not to wake the entire house.

I told him neither of us were comfortable with the other dr at all...and I told him exactly why...breach of confidentiality, not knowing which ec he had...and the dismal chemo room...and the arrogance of the chemo people saying..He WILL have a port. Needless to say the IV therapy nurses had no trouble hitting a vein...first try. Experts at doing this of course. He was stunned when I told him this...and the name he gave me is the other dr's boss...ha...I like to plan ahead for the "just in cases"...cause there are always those down the road.

Like to have those ducks in a row..I know...there's always a few that don't want to stand in a row...but we try. If worse comes to worse, I have my shelties to help herd those ducks.

He was comfortable in the setting...I was a gofer...for cofee...ice etc...he played with his new MyTouch 4G...and I can't count the times I had to put down my Kindle to bail him out when something didn't do what it was suppose to. I think he has magneto hands..honestly..Mine works perfectly...mainly because I learned how to use it...I'm always trying something new...today I sent a picture to our son in Maine of his Dad getting chemo...they had a blizzard today.

When he was finished...hit the casino boat for a polish sausage sandwich...which is what he wanted...

I was the driver home...pitch black and snowing..he's lucky I will drive or he'd be at Munster...my friends won't drive in Chicago...

After all of this do you think there was a thank you? Nope...just as always...

That gets old the very first time it happens.

He has schedule for blood work etc..and doesn't go back for 3 weeks if blood tests are ok..they are now.

Been a long day...and we didn't start chemo until 3:30 pm..yawn..

jan

Callaloo

Thank you
I am reminding myself to thank my dear husband who has suffered with me as I went through treatment. I can't honestly say I have said it, or if I've said it enough, but my gratitude for his help is constantly in my heart. Maybe that's the case with your husband. Caregivers never get enough thanks.

I'm glad for you and Tom that treatment is finally underway.

Lu

Tina Blondek

Hey Jan
Thanks for your
Hey Jan
Thanks for your recent update. Do not think you are alone with the "thank yous" My dad was the same way, most of the time. Just a guy thing, I think. Dad did not communicate his true true feelings for mom and I until I suggested we start writing in a family journal. It was wonderful, mom and I still write in one. There my dad told us how much he appreciated all that we did for him. How greatful he was. He told us what a great job we were both doing. Your husband knows it, he realizes it, he just does not know how to express it. Maybe a journal would be good for him as well. Hang in there girl...those ducks are almost in that row! Hugs to you both.
Tina in Va

oriontj

Tina Blondek said:

Hey Jan
Thanks for your
Hey Jan
Thanks for your recent update. Do not think you are alone with the "thank yous" My dad was the same way, most of the time. Just a guy thing, I think. Dad did not communicate his true true feelings for mom and I until I suggested we start writing in a family journal. It was wonderful, mom and I still write in one. There my dad told us how much he appreciated all that we did for him. How greatful he was. He told us what a great job we were both doing. Your husband knows it, he realizes it, he just does not know how to express it. Maybe a journal would be good for him as well. Hang in there girl...those ducks are almost in that row! Hugs to you both.
Tina in Va

You think as long as we've been married
Whether it's a guy thing or not...I just say get over it...we excuse a lot of guy behavior using those words and it's simply a way of letting them get away with it...so says our parish priest and other professionals.

So it doesn't fly around here. Three knee replacements for 2 knees always a thank you.
People who are taken for granted stop doing things for those that take them for granted quickly..and I'm no exception. Put up with it long enough...and I don't any more. That's definitely a girl thing..VBG. So he gets the picture or he will be getting things for himself...no need for me since he can do them and he doesn't have to be undying grateful, just a thank you will do.

If I don't take a stand...I'll be a doormat, been there done that and don't do it any more in any way shape or form...My sanity is worth more than that.

So thankfully he's off playing cribbage and I'm heading for Joann's and Borders...I could spend a day in our Joann's super store and not see everything..my therapy.

jan

Callaloo

chemo
Jan, I can't remember what Tom had as his original chemo. Are you saying he's taking the same drug combination again (except for the Erbitux). And is there a medical reason he's not taking the Erbitux, or is it just that the insurance won't pay for it now that he's no longer in the trial?

I hope things are going well for you.

Lu in Oregon

sandy1943

oriontj said:

You think as long as we've been married
Whether it's a guy thing or not...I just say get over it...we excuse a lot of guy behavior using those words and it's simply a way of letting them get away with it...so says our parish priest and other professionals.

So it doesn't fly around here. Three knee replacements for 2 knees always a thank you.
People who are taken for granted stop doing things for those that take them for granted quickly..and I'm no exception. Put up with it long enough...and I don't any more. That's definitely a girl thing..VBG. So he gets the picture or he will be getting things for himself...no need for me since he can do them and he doesn't have to be undying grateful, just a thank you will do.

If I don't take a stand...I'll be a doormat, been there done that and don't do it any more in any way shape or form...My sanity is worth more than that.

So thankfully he's off playing cribbage and I'm heading for Joann's and Borders...I could spend a day in our Joann's super store and not see everything..my therapy.

jan

Hi Jan,
I wish I could
Hi Jan,
I wish I could remember if I said thank you when my husband did so much for me. There is no way I could ever let him know how much he means to me. I do know, if the shoe was on the other foot, I would want to thank him for letting me care for him. I don't expect to be thanked for showing my love to anybody, especiaaly my husband. I'm sorry if I'm coming across strong, but having been the patient and having my body destroyed with the drugs, I didn't remember to have my best manners all the time. My husband understood,but kept loving me anyway. Yes, the caregiver does have to have outlets, and to walk away sometimes when it's getting rough. That is needed for you to stay healthy for the cancer patient.

This is a very hard road to travel, My prayers are with you both,
Sandra

oriontj

sandy1943 said:

Hi Jan,
I wish I could
Hi Jan,
I wish I could remember if I said thank you when my husband did so much for me. There is no way I could ever let him know how much he means to me. I do know, if the shoe was on the other foot, I would want to thank him for letting me care for him. I don't expect to be thanked for showing my love to anybody, especiaaly my husband. I'm sorry if I'm coming across strong, but having been the patient and having my body destroyed with the drugs, I didn't remember to have my best manners all the time. My husband understood,but kept loving me anyway. Yes, the caregiver does have to have outlets, and to walk away sometimes when it's getting rough. That is needed for you to stay healthy for the cancer patient.

This is a very hard road to travel, My prayers are with you both,
Sandra

I'm smiling
My need for sanity has nothing to do with my husband...not at all. My need to stay healthy is not for him either. I'm glad you have been blessed with a loving spouse...not all of us have. For those of us that haven't...this is particularly a rough road. I have had many talks with our parish priest...he knows the story and he has told me time and time again...only do what you can do and what you feel you want to do. Don't feel guilty if you aren't able to be a saint...not many of us are. That may sound cruel to you but you aren't living my life and be glad that you aren't. It isn't very pleasant. So as Father said...do what you have to do to keep your own sanity and leave the rest to God. That's much better than hearing...oh oh you are a bad person for sure and heading for Hell's fires...no he said there is a special place for people who have put up with I have for many years.. He told me there is no way he will ever change and nothing I can do will change that...I have forgiven him but he told me never to forget what has happened. It's called Forgiveness with Protection. You can shake your head and say oh boy that sure is horrible person...so be it. I'm not...but I cannot give what I don't have to give him...that has been gone a long time and he knows why..has known for a long time. He refused to do anything to help the situation and know he reaps what he has sown.
So think of that before you say what you did...the cancer patient believe it or not is not the most important person in the world...other people are also involved and have their own concerns and if it isn't cancer, it doesn't mean it's not extremely important.

Enough on this topic...manners never go out of style...ever...

jan

oriontj

Callaloo said:

chemo
Jan, I can't remember what Tom had as his original chemo. Are you saying he's taking the same drug combination again (except for the Erbitux). And is there a medical reason he's not taking the Erbitux, or is it just that the insurance won't pay for it now that he's no longer in the trial?

I hope things are going well for you.

Lu in Oregon

Tom's original chemo
Taxol and Cisplatin and Erbutux...it was a clinical trial...and one of the qualifications was no previous chemo treatment.

I asked Dr. Villor since Erbutux is a targeted treatment if he was tested prior to the trial...she said no...the results are mixed on Erbitux...some do well and some don't...and the test didn't predict who would do well and wouldn't...so they don't know if that was the drug that helped or not..

So now it's a form of Taxol and Carboplatin...and she thinks it will respond to it...we'll see in a couple of months...if he doesn't drive me crazy by then...

Any wife out there have a T Mobile MyTouch4G...our newest gadget...mine was up and running within an hour. I had it all set up and personalized and no I have never had an Android smartphone before just one that made calls.....I flew around it with no trouble..meanwhile there was my husband, what do i do next and if I showed him...no just tell me...these phones are not something you tell someone how to work...they are extremely intuitive and all you need to do is play with them to learn how to use them...oh no...that would be too much work...I want to take his back and get an easy one for him..or hide it or give it to our son...the phones are both mine so I just may do that.

Erbitux is extremely expensive and the trial paid for it...something like $30-40,000 a pop...certainly nothing we would be paying out of pocket for...ever..especially since it isn't know if that was the drug that did the trick...

jan

Callaloo

oriontj said:

Tom's original chemo
Taxol and Cisplatin and Erbutux...it was a clinical trial...and one of the qualifications was no previous chemo treatment.

I asked Dr. Villor since Erbutux is a targeted treatment if he was tested prior to the trial...she said no...the results are mixed on Erbitux...some do well and some don't...and the test didn't predict who would do well and wouldn't...so they don't know if that was the drug that helped or not..

So now it's a form of Taxol and Carboplatin...and she thinks it will respond to it...we'll see in a couple of months...if he doesn't drive me crazy by then...

Any wife out there have a T Mobile MyTouch4G...our newest gadget...mine was up and running within an hour. I had it all set up and personalized and no I have never had an Android smartphone before just one that made calls.....I flew around it with no trouble..meanwhile there was my husband, what do i do next and if I showed him...no just tell me...these phones are not something you tell someone how to work...they are extremely intuitive and all you need to do is play with them to learn how to use them...oh no...that would be too much work...I want to take his back and get an easy one for him..or hide it or give it to our son...the phones are both mine so I just may do that.

Erbitux is extremely expensive and the trial paid for it...something like $30-40,000 a pop...certainly nothing we would be paying out of pocket for...ever..especially since it isn't know if that was the drug that did the trick...

jan

You are so funny
Jan, you're smiling, and you make me smile too. Thanks.

Lu

sandy1943

oriontj said:

I'm smiling
My need for sanity has nothing to do with my husband...not at all. My need to stay healthy is not for him either. I'm glad you have been blessed with a loving spouse...not all of us have. For those of us that haven't...this is particularly a rough road. I have had many talks with our parish priest...he knows the story and he has told me time and time again...only do what you can do and what you feel you want to do. Don't feel guilty if you aren't able to be a saint...not many of us are. That may sound cruel to you but you aren't living my life and be glad that you aren't. It isn't very pleasant. So as Father said...do what you have to do to keep your own sanity and leave the rest to God. That's much better than hearing...oh oh you are a bad person for sure and heading for Hell's fires...no he said there is a special place for people who have put up with I have for many years.. He told me there is no way he will ever change and nothing I can do will change that...I have forgiven him but he told me never to forget what has happened. It's called Forgiveness with Protection. You can shake your head and say oh boy that sure is horrible person...so be it. I'm not...but I cannot give what I don't have to give him...that has been gone a long time and he knows why..has known for a long time. He refused to do anything to help the situation and know he reaps what he has sown.
So think of that before you say what you did...the cancer patient believe it or not is not the most important person in the world...other people are also involved and have their own concerns and if it isn't cancer, it doesn't mean it's not extremely important.

Enough on this topic...manners never go out of style...ever...

jan

Hi Jan, You're right, I
Hi Jan, You're right, I havn't walked in your shoes, and we are so blessed to have the relationship we have. It hasn't been a bed of roses for 48 yrs.. We "both" had to work at it. It does take both and if one doesn't do that, then I do understand the distance that can grow. I could and would not except a situation like that unless I really loved him.

Cancer can become a center point in the lives of a cancer patient and their family. In our situation we learned to appreciate each other more. My family grew very close and it is a time we'll never forget because it makes one realize the importance of each day and never to take it for granted. I have so many good memories that out weigh the bad- the times we were together, caring and loving the moment, because we didn't know what the next day would bring. We as a family realize more than ever how much we mean to each other. My cancer was a learning tool and yes, for a while, it was the focal point of our lives and it wasn't by choice.

I used to be able to catch on to any gadgit. I don't even try anymore. I don't have the patience to learn. My husband is the same way, so we're not trying . Give me the simple things. Love to read. Was thinking about getting a kindle, but I don't know if it's for me. I've been told they are great. Maybe one day I'll give it a try.

Prayers, Sandra

oriontj

sandy1943 said:

Hi Jan, You're right, I
Hi Jan, You're right, I havn't walked in your shoes, and we are so blessed to have the relationship we have. It hasn't been a bed of roses for 48 yrs.. We "both" had to work at it. It does take both and if one doesn't do that, then I do understand the distance that can grow. I could and would not except a situation like that unless I really loved him.

Cancer can become a center point in the lives of a cancer patient and their family. In our situation we learned to appreciate each other more. My family grew very close and it is a time we'll never forget because it makes one realize the importance of each day and never to take it for granted. I have so many good memories that out weigh the bad- the times we were together, caring and loving the moment, because we didn't know what the next day would bring. We as a family realize more than ever how much we mean to each other. My cancer was a learning tool and yes, for a while, it was the focal point of our lives and it wasn't by choice.

I used to be able to catch on to any gadgit. I don't even try anymore. I don't have the patience to learn. My husband is the same way, so we're not trying . Give me the simple things. Love to read. Was thinking about getting a kindle, but I don't know if it's for me. I've been told they are great. Maybe one day I'll give it a try.

Prayers, Sandra

Not a center point here
I have always known the importance of each day...others not so much. We haven't been married as long as you have but have been separated a few times...like this time...so it's no wonder I sure would love to be anywhere else but here. My patience with him is about zero..and if I roll my eyes one more time, they may end up on the floor...in response to something stupid he just did....it never ends.

Now, I have my own life and will do what I can if I choose to. Been on the other end of that before and survived. I would feel differently if it was one of my children...they are true family, blood lines.

So that's where it stands and it won't change or get better...

Patience for some times I have...gadgets, painting, knitting...all require patience...but you see the results...patience for ungrateful people well...not at all.

sandy1943

oriontj said:

Not a center point here
I have always known the importance of each day...others not so much. We haven't been married as long as you have but have been separated a few times...like this time...so it's no wonder I sure would love to be anywhere else but here. My patience with him is about zero..and if I roll my eyes one more time, they may end up on the floor...in response to something stupid he just did....it never ends.

Now, I have my own life and will do what I can if I choose to. Been on the other end of that before and survived. I would feel differently if it was one of my children...they are true family, blood lines.

So that's where it stands and it won't change or get better...

Patience for some times I have...gadgets, painting, knitting...all require patience...but you see the results...patience for ungrateful people well...not at all.

Hi Jan, I understand where
Hi Jan, I understand where you're coming from.

About the gadgits---Use to love new things-not anymore. I told my DIL to pick me out a simple new phone on line. She did and I didn't even see it until I got it. I can call- text and receive pitures. It is considered a phone for senoirs. It is so simple.I like it now, but knowing me, next one I'll probably want the works and then somebody like you better be around to show me how to use it.
Sandra

oriontj

sandy1943 said:

Hi Jan, I understand where
Hi Jan, I understand where you're coming from.

About the gadgits---Use to love new things-not anymore. I told my DIL to pick me out a simple new phone on line. She did and I didn't even see it until I got it. I can call- text and receive pitures. It is considered a phone for senoirs. It is so simple.I like it now, but knowing me, next one I'll probably want the works and then somebody like you better be around to show me how to use it.
Sandra

As long as it isn't 12 inches long
it'll work fine..my old phone did nothing...so it was time for all the bells and whistles..back in the olden days, I learned how to do websites writing the htlm text for everything...loved it..now programs do it in a snap...

I also have a Kindle and I love that also...take it along when I go with Tom...in the process of downloading music to my phone...I have it all my MP3 player which caused me more trouble than this new phone...

They are so easy to use...if I asked for DIL to pick me a phone, it would of been an iphone for sure...this one is even better being an android.

Everyone is happy here..Chicago Bears won this afternoon and I won $$$ at the casino boats after dinner...all's right in the world for sure...Also it was Sunday and we all went to Mass before the game..

I keep thinking those poor saints and God and Jesus and Mary must be saying..OH no more prayers from her...my ears are tired...VBG...and I can actually kneel easily on two knee replacements...superior surgeon did a good job.

Have a good week,

jan