today is the day....

krystiesq

For second opinions. I'm taking my mom to a major cancer center today at 2. I'm both nervous and hopeful. Please pray for her today.

msccolon

your mother's second opinion
Kristi, you have done such an excellent job so far and you will continue to do so. It is awesome to watch you worry and care for your mother; you love her so and I am sure she can feel it and deeply appreciates it. Just picture yourself beyond the appointment, feeling good about your decision to go to a major cancer center for a second opinion, and armed with information about her diagnosis and coming treatment that you feel good about. Prayers that God wraps you in His arms for strength and comfort as you continue down this road.
mary

KathiM

Information is power....
Even if this center says the same thing, well, information is always helpful.

Write down the questions you want to ask, take them with you. Admit that you are nervous, that this is so important. Most doctors are very sympathetic, and will take the time to make you feel better about things. Write down the answers...lol...if you return to the first doctor, he/she will want to know (not that the people today won't also send a report, but, again, information and knowledge is power!).

Keep us posted, I'm sending good vibes...

Hugs, Kathi

kimby

Best Wishes
Kristi,

I'm sending you and your family prayers and good wishes today. Different opinions will give you options and the same opinions will give you peace that the treatment is the right one.

Believe in healing, Hope for the future, Rejoice in the love of your mother.

Kimby

krystiesq

Thank you all!
I'm confindent that today will be drenched with good news...either confirmation that we're on the right track or as you said above new options. We've got a lot to look forward to. Last year at this time (actually on the 2nd of Nov.) she was diagnosed. She missed out on halloween and her two grandkids trick or treating. Now this year she is able and will partake in the festivities, and she now has 4 grand daughters to enjoyin constume (and my hound who has a skunk costume)! Also, unbeknownst to her (and my father, he would tell her)...I am throwing her a surprise birthday party. She turns 60 years young and already teased my father that he has to buy her two presents because she was in the hospital last year for her birthday. She will be shocked. I also commissioned my friend who is a musician to come and play an acoustic set of her favorite songs. I'm getting my mind off today and focusing on beyond...thanks Mary, great advice. I'll be sure to update tonight or tomorrow.

be well & peace be with you.

rrob

Hope and prayers
Please know that you will be in my thoughts and prayers today. Please let us know what you find out. Your mother is so blessed to have you with her during this journey. I also was diagnosed around this time last year (October 26) and had surgery on October 30. I found myself very emotional and overwhelmed this weekend and finally realized that it was because of the time. Just a heads up--your mom may not have these feelings, but just in case. The birthday party for your mom is a great idea--celebrate her birthday and enjoy!!! She already has a wonderful gift-a very special daughter.

Rebecca

hopefulone

Good luck and sending prayers
Keeping you both in my thoughts and prayers. Keep us posted.
God Bless
Diane

krystiesq

2nd opinion
We went to the James Cancer Center in Columbus today. We got reassurance that her onc was following protocol and that she is on the right track and we have decided to transfer to this other doctor. The new team is testing her to see if she has an enzyme deficiency that would rule out the use of camptosar (which might explain why she reacted so harshly) and they are testing for the k-ras mutation & doing another CT scan. Basically I think they are more thorough, cleaner and more efficient than the treatment she was receiving at the previous facility of which we lost confidence. The doc did not make a bid deal about her thyroid having increased uptake on the pet scan and said it was probably a goiter and that they would look into it. So right now my mom is feeling ok about this 2nd opinion. Although she was discouraged when the doctor said she is not curable. I kept reminding her that stage iv is beatable and many have beat this disease into submission and have lived very long lives NED. So, that is my update. thank you for words of encouragement.

KathiM

krystiesq said:

2nd opinion
We went to the James Cancer Center in Columbus today. We got reassurance that her onc was following protocol and that she is on the right track and we have decided to transfer to this other doctor. The new team is testing her to see if she has an enzyme deficiency that would rule out the use of camptosar (which might explain why she reacted so harshly) and they are testing for the k-ras mutation & doing another CT scan. Basically I think they are more thorough, cleaner and more efficient than the treatment she was receiving at the previous facility of which we lost confidence. The doc did not make a bid deal about her thyroid having increased uptake on the pet scan and said it was probably a goiter and that they would look into it. So right now my mom is feeling ok about this 2nd opinion. Although she was discouraged when the doctor said she is not curable. I kept reminding her that stage iv is beatable and many have beat this disease into submission and have lived very long lives NED. So, that is my update. thank you for words of encouragement.

A matter of symantics....
Cure, remission....who's to mind, as long as the beast is kept away....

You are SUCH a wonderful help to your mom! And confidence in the treatment team can make or break the good outcome!

I'm glad the new center is doing all the tests. I am constantly amazed at all the new 'gene/DNA' testing they are doing now....back in my time (only 4 years ago...lol) the only way they could tell if chemo would work was to TRY it...patient comfort be hanged!

Thanks for the update, give yourself and your mom a BIG hug...

Hugs, Kathi

tootsie1

krystiesq said:

2nd opinion
We went to the James Cancer Center in Columbus today. We got reassurance that her onc was following protocol and that she is on the right track and we have decided to transfer to this other doctor. The new team is testing her to see if she has an enzyme deficiency that would rule out the use of camptosar (which might explain why she reacted so harshly) and they are testing for the k-ras mutation & doing another CT scan. Basically I think they are more thorough, cleaner and more efficient than the treatment she was receiving at the previous facility of which we lost confidence. The doc did not make a bid deal about her thyroid having increased uptake on the pet scan and said it was probably a goiter and that they would look into it. So right now my mom is feeling ok about this 2nd opinion. Although she was discouraged when the doctor said she is not curable. I kept reminding her that stage iv is beatable and many have beat this disease into submission and have lived very long lives NED. So, that is my update. thank you for words of encouragement.

So glad
I'm so glad you were able to take your mom for another opinion. And it's great that you liked the new team. I pray you and your mom will both feel very peaceful and hopeful about the results.

*hugs*
Gail

CherylHutch

krystiesq said:

2nd opinion
We went to the James Cancer Center in Columbus today. We got reassurance that her onc was following protocol and that she is on the right track and we have decided to transfer to this other doctor. The new team is testing her to see if she has an enzyme deficiency that would rule out the use of camptosar (which might explain why she reacted so harshly) and they are testing for the k-ras mutation & doing another CT scan. Basically I think they are more thorough, cleaner and more efficient than the treatment she was receiving at the previous facility of which we lost confidence. The doc did not make a bid deal about her thyroid having increased uptake on the pet scan and said it was probably a goiter and that they would look into it. So right now my mom is feeling ok about this 2nd opinion. Although she was discouraged when the doctor said she is not curable. I kept reminding her that stage iv is beatable and many have beat this disease into submission and have lived very long lives NED. So, that is my update. thank you for words of encouragement.

Cure/Remission
There are two words I really hate when it comes to this nasty, nasty disease... and that is "terminal" and "incurable". When you have been given a diagnosis of cancer, both those words become very scary... and in days not so long ago, they literally meant a "death sentence". If you had terminal cancer or incurable cancer, then you knew death was around the corner... so is it any wonder when we hear those words a knife of fear goes through our, and our caregivers' hearts??

But, this is 2008, soon to be 2009. Those words are still around and still used as often as they used to be... but they actually have a whole different meaning. "Terminal cancer" means you have cancer and there is no way medicine can kill the cells and guarantee that it will never come back. Incurable cancer means, pretty much the same thing, although there's a twist to that word.... medicine can not kill off the cells guaranteeing no return, but the word itself can be broken down to:

IN - CURE - ABLE

What does that mean?? The "cure" is with"IN" your "able" self. If you are able to use the positive energy within yourself and take any and all positive energy given to you from friends, family and loved ones... combine that power with the help of modern medicine, then it's more than likely you will "Cure" your current diagnosis and throw yourself into Cure/Remission.

The other two words, which us patients DO want to hear is CURE and REMISSION. Personally, I think the two go hand in hand. Whether you are "cured" or whether you have gone into "remission" both physical states are the states you want to be in... and that's where our attitude and positive thinking, combined with the fantastic treatments that the doctors/researchers have come up with for this disease, will put us in that state.

Sooooo... when we hear those words -- "You have terminal cancer" or "Your cancer is incurable" -- don't look at this with fear (although, easier said than done). Know that it means medicine alone can't lick the beast into submission, we also have to bring out the heavy guns of positive attitude, positive thinking, and that all depends on your beliefs. Believing in God is positive for those who rely on their faith, prayer is positive thoughts being sent out; positive thinking is... well, positive thoughts being sent out... and positive attitude beats a negative attitude any day of the week

Huggggggs,

Cheryl

PS: You don't have to believe me, this is my opinion... BUT, look at how many on this board have reported that they were diagnosed as a Stage 3 or 4, some with more than one bout of primary cancer... and they are still here to tell us about it... and their attitudes and personalities are so positive. It doesn't take much to put 2 + 2 together and go hmmmmmm

KathiM

CherylHutch said:

Cure/Remission
There are two words I really hate when it comes to this nasty, nasty disease... and that is "terminal" and "incurable". When you have been given a diagnosis of cancer, both those words become very scary... and in days not so long ago, they literally meant a "death sentence". If you had terminal cancer or incurable cancer, then you knew death was around the corner... so is it any wonder when we hear those words a knife of fear goes through our, and our caregivers' hearts??

But, this is 2008, soon to be 2009. Those words are still around and still used as often as they used to be... but they actually have a whole different meaning. "Terminal cancer" means you have cancer and there is no way medicine can kill the cells and guarantee that it will never come back. Incurable cancer means, pretty much the same thing, although there's a twist to that word.... medicine can not kill off the cells guaranteeing no return, but the word itself can be broken down to:

IN - CURE - ABLE

What does that mean?? The "cure" is with"IN" your "able" self. If you are able to use the positive energy within yourself and take any and all positive energy given to you from friends, family and loved ones... combine that power with the help of modern medicine, then it's more than likely you will "Cure" your current diagnosis and throw yourself into Cure/Remission.

The other two words, which us patients DO want to hear is CURE and REMISSION. Personally, I think the two go hand in hand. Whether you are "cured" or whether you have gone into "remission" both physical states are the states you want to be in... and that's where our attitude and positive thinking, combined with the fantastic treatments that the doctors/researchers have come up with for this disease, will put us in that state.

Sooooo... when we hear those words -- "You have terminal cancer" or "Your cancer is incurable" -- don't look at this with fear (although, easier said than done). Know that it means medicine alone can't lick the beast into submission, we also have to bring out the heavy guns of positive attitude, positive thinking, and that all depends on your beliefs. Believing in God is positive for those who rely on their faith, prayer is positive thoughts being sent out; positive thinking is... well, positive thoughts being sent out... and positive attitude beats a negative attitude any day of the week

Huggggggs,

Cheryl

PS: You don't have to believe me, this is my opinion... BUT, look at how many on this board have reported that they were diagnosed as a Stage 3 or 4, some with more than one bout of primary cancer... and they are still here to tell us about it... and their attitudes and personalities are so positive. It doesn't take much to put 2 + 2 together and go hmmmmmm

Ummm, let's see.....does that make 5????
Or what????

(I had stage 5....stage III rectal + stage II breast...lol!)*

(ROFL)

Hugs, Kathi


*betcha though I couldn't add, huh?

CherylHutch

KathiM said:

Ummm, let's see.....does that make 5????
Or what????

(I had stage 5....stage III rectal + stage II breast...lol!)*

(ROFL)

Hugs, Kathi


*betcha though I couldn't add, huh?

Stage 5!!
Hahaha Kathi!! There you have it!! You are a Stage 5 Survivor!! And are still here to tell us about it, to laugh and to let us know all about the trip you are about to take... TURKEY of all places!!

When I was told at the time of diagnosis, I was a Stage III, I went into denial. Then I started saying to myself, "Welllll, Stage III isn't as bad as Stage IV and we all know that Stage IV is the last stage, and well, I don't have that, so this is a good thing!!" Of course, when the first PET scan after I had finished my treatments proved that the cancer had actually spread to my adrenal gland and there's indication in my lungs, that sort of blew my theory that Stage III was not as bad as Stage IV right out the water

And yes, I think it was about this time that I started falling apart. My poor information loaded brain just couldn't cope with any more information, and certainly no information about such things as "the cancer has spread", "the statistics for colon cancer that has spread is not good". HELLO??? This is me we are talking about!! I could not even begin to think that I might be in a spot of trouble here... let alone a heap of trouble. But reality kind of sucked... all these kind doctors were treating me like I was a patient that needed a lot of treatments or whatever because this was not something to take lightly... so I think that's when I started cracking. And that's when my GP (family doctor) stepped in and said, "Well, we have to put a stop to this... we can't have you living the rest of your life, no matter how long it is, in a state of terror." And that's when he put me on the anti-anxiety meds.

I guess I was on them for about 7 days or so until my next onc appt... and it was at that appt. that she said she had taken my case to case conference and we now have a plan. The word "plan" is my mojo... as long as we have a "plan", I'm a happy camper! I immediately perked up and said, "A plan??? An honest to goodness plan to move forward?? We are not at the end of our options, but you have a PLAN??" Yes, Cheryl... and honest to goodness plan, but it's one I have to talk over with you because you must totally understand any plans we are going to ever do and agree to them. We are not going to do anything that you don't agree with.

But, I was just so darn excited that we had a plan... which involved surgery for the removal of the adrenal gland and then surgery to remove the tumour from the lung. Sounded like a darn fine plan to me

Well, we did the adrenal, but it was just recently that my lung surgeon said he'd rather we try something else, like chemo, to get rid of the small spots that are on both lungs before doing the surgery for the tumour we were going to remove. Oh oh... it appears my plan has met a barrier.

Cheryl is not a happy camper when she doesn't have a plan. She gets nervous... and anxious. So, back on the anti-anxiety med until I had the PET scan done and then a week wait to see my onc to get the results of the PET scan. When I went to see her, I was a bit nervous... what if she said that chemo wouldn't work... THEN what?? But no!! That wonderful lady said, "Cheryl, I have another PLAN!" The plan now is to figure out if I am a good candidate for the lung ablation, which, if I am, then we can get rid of the small spots by ablating them and I won't need to do the chemo before surgery. If I'm not a candidate for it, then fine, we will do the chemo and then the surgery. So again, I'm a happy camper because even though the original PLAN has change, we still have a PLAN!!

Soooo what I'm getting at here... it really doesn't matter if you are a Stage 1, 2, 3 or 4 (or in Kathi, your case, a 5! ), the important thing is that you have a plan in place... and if you are not comfortable with your plan, then you talk to your doctors/oncs about a possible change to the plan.

I now look at the Staging as just numbers to depict what sorts of plans they have to come up with

Huggggggs,

Cheryl

Kanort

krystiesq said:

2nd opinion
We went to the James Cancer Center in Columbus today. We got reassurance that her onc was following protocol and that she is on the right track and we have decided to transfer to this other doctor. The new team is testing her to see if she has an enzyme deficiency that would rule out the use of camptosar (which might explain why she reacted so harshly) and they are testing for the k-ras mutation & doing another CT scan. Basically I think they are more thorough, cleaner and more efficient than the treatment she was receiving at the previous facility of which we lost confidence. The doc did not make a bid deal about her thyroid having increased uptake on the pet scan and said it was probably a goiter and that they would look into it. So right now my mom is feeling ok about this 2nd opinion. Although she was discouraged when the doctor said she is not curable. I kept reminding her that stage iv is beatable and many have beat this disease into submission and have lived very long lives NED. So, that is my update. thank you for words of encouragement.

Plans!
Great news, Krystie! It sounds as though your mother's new team has several plans for your mother's treatment. Give your mother a birthday hug....the party sounds fantastic!

Keep us posted.

Kay

kj1017

Kanort said:

Plans!
Great news, Krystie! It sounds as though your mother's new team has several plans for your mother's treatment. Give your mother a birthday hug....the party sounds fantastic!

Keep us posted.

Kay

healing bag
I read one of the posts where they said you had something called the healing bag and to get one all we had to do was email you..

Please let me know if you need anything else...my husband has colon cancer stage 4

Buzzard

krystiesq said:

2nd opinion
We went to the James Cancer Center in Columbus today. We got reassurance that her onc was following protocol and that she is on the right track and we have decided to transfer to this other doctor. The new team is testing her to see if she has an enzyme deficiency that would rule out the use of camptosar (which might explain why she reacted so harshly) and they are testing for the k-ras mutation & doing another CT scan. Basically I think they are more thorough, cleaner and more efficient than the treatment she was receiving at the previous facility of which we lost confidence. The doc did not make a bid deal about her thyroid having increased uptake on the pet scan and said it was probably a goiter and that they would look into it. So right now my mom is feeling ok about this 2nd opinion. Although she was discouraged when the doctor said she is not curable. I kept reminding her that stage iv is beatable and many have beat this disease into submission and have lived very long lives NED. So, that is my update. thank you for words of encouragement.

Not curable
OK, lemme get this straight..the doc says shes not curable....Hmmm, lemme see doesn't God have the final say about all of this ? Last I heard he did.....Secondly not curable, looking at that little announcement "not curable" is what my wife says of my ignorance, she tells me all the time that I am incurable, little does she know that I am using reverse phychology (sp) on her, I simply act ignorant to avoid all of the Honey dos that have accumulated over the last year. Nothing I can't handle , just making sure that they really need being done "immediately" as she says....LOL......
What was incurable yesterday may be curable tomorrow.
Something to keep in mind about incurables and curables...My sister died in 1954 of Polio at the age of 6. She died in an iron lung. Very sad time for my mother and father, my father never really got over it and suffered depression for a long time but lived with it. Do you know what also happened in 1954...............Yes, it was the same year as the vaccine for polio came to the aid of the countrys citizens.
Always be hopeful, there will be a cure for everything. I have considered that my purpose for being here is to advocate for cancer victims to ease their minds and also to be used as a "guinea Pig" so to speak in the learning of this disease so that in the future some Mom and Dad can look back in time and say these very words,"thank you Lord for the suffering that these people went through to save our son/daughter of this dreaded disease and for the cure that was found because of them ".......That is my soul purpose in life, to be one of many that are used to find that cure so that others will not suffer, some did it for us, we will do it for others as well..............God Bless you both

krystiesq

Buzzard said:

Not curable
OK, lemme get this straight..the doc says shes not curable....Hmmm, lemme see doesn't God have the final say about all of this ? Last I heard he did.....Secondly not curable, looking at that little announcement "not curable" is what my wife says of my ignorance, she tells me all the time that I am incurable, little does she know that I am using reverse phychology (sp) on her, I simply act ignorant to avoid all of the Honey dos that have accumulated over the last year. Nothing I can't handle , just making sure that they really need being done "immediately" as she says....LOL......
What was incurable yesterday may be curable tomorrow.
Something to keep in mind about incurables and curables...My sister died in 1954 of Polio at the age of 6. She died in an iron lung. Very sad time for my mother and father, my father never really got over it and suffered depression for a long time but lived with it. Do you know what also happened in 1954...............Yes, it was the same year as the vaccine for polio came to the aid of the countrys citizens.
Always be hopeful, there will be a cure for everything. I have considered that my purpose for being here is to advocate for cancer victims to ease their minds and also to be used as a "guinea Pig" so to speak in the learning of this disease so that in the future some Mom and Dad can look back in time and say these very words,"thank you Lord for the suffering that these people went through to save our son/daughter of this dreaded disease and for the cure that was found because of them ".......That is my soul purpose in life, to be one of many that are used to find that cure so that others will not suffer, some did it for us, we will do it for others as well..............God Bless you both

Thanks Buzzard
That made my day. Over the weekend my dad reminded my mom that their 40th wedding anniversary is next year. My mom asked if he thought she would be here and said you know the doctor said I am incurable. My Dad replied immediately, "It isn't up to him."

KathiM

krystiesq said:

Thanks Buzzard
That made my day. Over the weekend my dad reminded my mom that their 40th wedding anniversary is next year. My mom asked if he thought she would be here and said you know the doctor said I am incurable. My Dad replied immediately, "It isn't up to him."

I agree....
Remember, I was given 6 months to live, 4 years ago. I just feel that I'm not finished doing what I'm supposed to yet, that there are still things left on my list...He knows what they are, I don't.

Hugs, Kathi

P.S. 'Statistics are for racehorses, expiration dates for dairy products'.

kimby

krystiesq said:

Thanks Buzzard
That made my day. Over the weekend my dad reminded my mom that their 40th wedding anniversary is next year. My mom asked if he thought she would be here and said you know the doctor said I am incurable. My Dad replied immediately, "It isn't up to him."

Incurable
Incurable isn't a declaration, it's a DARE! I double dog dare her to be there for her 40th anniversary!

Kimby

Kanort

kj1017 said:

healing bag
I read one of the posts where they said you had something called the healing bag and to get one all we had to do was email you..

Please let me know if you need anything else...my husband has colon cancer stage 4

Healing Bag!
Hi,

Please email your mailing information so I can get a healing bag to your husband.

Thinking of you both.

Hugs,

Kay