Friday I Meet With The RFA Doc!
Sooooo, I head out to the hospital which is about an hour's drive from my place (too bad he didn't work out of the hospital 6 blocks up the road from me), Friday afternoon. Dr. Halkier will be there for the CAT scan which he wants done a certain way, or at a certain angle or something different than the norm. After I've had the CAT scan, I get dressed and then I'll have my consult appt. with him. YAYAYAYA!! I love it that the two appts. (CAT scan and then Consult) are going to be done on the same day, one after the other, rather than have to come back after the weekend
It will be at this consult appt. that he will be able to tell me whether he thinks he can do the RFA and what the risks are, etc. I am soooo keeping my fingers crossed that he will be able to to it. Actually, that he will be able to do it 2-4 times if need be. I already know that if he's able to do more than one, then they will be separate procedures... but that's ok. This procedure is sooooo much less invasive than lung surgery!
Sooooo wish me luck that I will know, after I've met with him, that it will be a go for the RFA procedure!!
Huggggggggs,
Cheryl
Comments
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BIG HUGGS!!!
Lots of prayers, hugs and good thoughts coming at you. Just visualize that RFA going in and knocking the juice right out of those spots! We are pulling for you.
I know what you mean about appointments. I, too, am nearly an hour from both radiation and chemo, but they are right next door to each other. It sometimes takes a miracle to get my appts lined up so I don't have to go back and forth all day, or, heaven forbid, hang out in town because there's not enough time to go home and come back for the next appt. I get so tired on those days, usually Mondays. I have to say that the radiation team has been wonderful about shifting me when they can. It's harder with chemo, they are always a full house in the treatment room.
{{{{{{{{{{HUGS}}}}}}}}}}}}
Vicki0 -
Great!
That's really great, Cheryl. I love it when you can stack appointments and not have the back and forth. I am keeping everything I have crossed for you to be able to have the RFA. You're right--so much less invasive and a history of good results. I am praying for you!
Kirsten0 -
Sending Good Vibes!
Hi Cheryl,
Thanks for letting us know about your appointments on Friday afternoon. With all of our collective, positive energy passing over the border, you can't help but get good news!!! Getting to know the results so soon after your scans is also such a stress reliever.
Believing nothing but the best possible outcome for you.
Hugs,
Kay0 -
Fingers Crossed
I sure hope your a canidate, speaking from a lung surgery recoverer, its not fun and hurts a lot. So I am praying he can do this for you and it will be so much easier on you. My prayers are with you and all my fingers and toes are crossed.
God Bless
Beth0 -
Thanks everyone!dixchi said:Fingers Crossed
Somehow I feel positive that the RFA will work out and I agree they are described as
much easier than surgery but I have not had one myself. Hugs, prayers and positive
thoughts for a successful outcome.
I really do thank you all for your posts of support. I went in to both appts. today full of vim and viger and just assuming that the CAT scan will be no different than in August and that the RFA will take place, however many times we need it to. I am now home and having to absorb the information I got today. The way I see it, it's a good news/bad news sort of thing.
The CAT scan showed the two nodules/tumours that we were expecting... the largest is between 17-19mm (about 3/4" at it's largest), the second one was about 7mm (about 1/4"). There are also about 5 other nodules too small to determine size but all under 6mm.
Dr. Halkier said a few things that sort of have me confused. On the one hand, he explained that I had a bad cancer when it was first diagnosed and that I have now had metastastic disease (the spread of), so this means that I do have cancer cells in my body that are looking for a place to settle... and that some have obviously settled in my lungs, hence the nodules that we are now seeing pop up. He figures that there are 7 that he can find, with 5 of them being very small. There could be more but they just don't show up on the scans yet, which is very common with metastasis.
He then said that there comes a time when it would not be beneficial to me, as the patient, to be treating these nodules with surgery or RFA because more are popping up. He says that he gets many, many referrals for lung nodules to be treated with RFA but that he has to turn away 50% of the patients that are referred to him, because they have more than one or two nodules... once a person has multiple nodules then RFA does not become beneficial . He will only offer RFA if there is a chance of a cure OR that it will benefit them with maintaining a good quality of life. So I thought he was telling me all this info to break it to me that since I have multiple nodules, he has to say no to the RFA.
But, he then said that he is willing to do RFA on the two larger nodules/tumours... he didn't turn me down. He feels that the smaller nodules (under 6mm) are indicative of spread/mestastasis and at some point I will have to go on chemo.
So that's where I'm confused... if he thinks this is progressing, then why am I falling into his 50% of patients he is willing to do the RFA on? I know I have probably misunderstood something somewhere... and I blame that on when doctors talk about spread/incurable/etc. my mind goes into shock and can't accept that they are talking about ME... so I'm sure I missed something along the way.
Now, the next hurdle is going to be the actual procedure. You see, to do it, he needs to use the probe with the guidance of a CAT scan machine. Where there may be a bit of a problem is that I'm a full-figure gal and to do the procedure, there has to be enough room between the CAT scanner and my body for the probe and his hand. I asked him if this procedure was similar to when they did the biopsy on my adrenal gland and he said yes.. but apparently the probe/needle for the RFA is longer than the one for the adrenal, hence the need for leeway. So, do keep your fingers crossed (again) that this won't be what stops the procedure!
Soooo... I do have a question for those of you who have had the RFA procedure before. Did you have multiple nodules or only one or two when they decided you were eligible for the procedure? Debbie, you mentioned you have had both the lung surgery and RFA. I take it that this was done on two different lungs (surgery on one, RFA on the other?). Did you only have the two nodules or did you have more... and how are they now?
I guess what I'm really looking for is that someone had RFA (or surgery) and still had small nodules and what is the plan for them in the future.
Thanks!
Hugggggggs,
Cheryl0 -
Somehow I missed your post....CherylHutch said:Thanks everyone!
I really do thank you all for your posts of support. I went in to both appts. today full of vim and viger and just assuming that the CAT scan will be no different than in August and that the RFA will take place, however many times we need it to. I am now home and having to absorb the information I got today. The way I see it, it's a good news/bad news sort of thing.
The CAT scan showed the two nodules/tumours that we were expecting... the largest is between 17-19mm (about 3/4" at it's largest), the second one was about 7mm (about 1/4"). There are also about 5 other nodules too small to determine size but all under 6mm.
Dr. Halkier said a few things that sort of have me confused. On the one hand, he explained that I had a bad cancer when it was first diagnosed and that I have now had metastastic disease (the spread of), so this means that I do have cancer cells in my body that are looking for a place to settle... and that some have obviously settled in my lungs, hence the nodules that we are now seeing pop up. He figures that there are 7 that he can find, with 5 of them being very small. There could be more but they just don't show up on the scans yet, which is very common with metastasis.
He then said that there comes a time when it would not be beneficial to me, as the patient, to be treating these nodules with surgery or RFA because more are popping up. He says that he gets many, many referrals for lung nodules to be treated with RFA but that he has to turn away 50% of the patients that are referred to him, because they have more than one or two nodules... once a person has multiple nodules then RFA does not become beneficial . He will only offer RFA if there is a chance of a cure OR that it will benefit them with maintaining a good quality of life. So I thought he was telling me all this info to break it to me that since I have multiple nodules, he has to say no to the RFA.
But, he then said that he is willing to do RFA on the two larger nodules/tumours... he didn't turn me down. He feels that the smaller nodules (under 6mm) are indicative of spread/mestastasis and at some point I will have to go on chemo.
So that's where I'm confused... if he thinks this is progressing, then why am I falling into his 50% of patients he is willing to do the RFA on? I know I have probably misunderstood something somewhere... and I blame that on when doctors talk about spread/incurable/etc. my mind goes into shock and can't accept that they are talking about ME... so I'm sure I missed something along the way.
Now, the next hurdle is going to be the actual procedure. You see, to do it, he needs to use the probe with the guidance of a CAT scan machine. Where there may be a bit of a problem is that I'm a full-figure gal and to do the procedure, there has to be enough room between the CAT scanner and my body for the probe and his hand. I asked him if this procedure was similar to when they did the biopsy on my adrenal gland and he said yes.. but apparently the probe/needle for the RFA is longer than the one for the adrenal, hence the need for leeway. So, do keep your fingers crossed (again) that this won't be what stops the procedure!
Soooo... I do have a question for those of you who have had the RFA procedure before. Did you have multiple nodules or only one or two when they decided you were eligible for the procedure? Debbie, you mentioned you have had both the lung surgery and RFA. I take it that this was done on two different lungs (surgery on one, RFA on the other?). Did you only have the two nodules or did you have more... and how are they now?
I guess what I'm really looking for is that someone had RFA (or surgery) and still had small nodules and what is the plan for them in the future.
Thanks!
Hugggggggs,
Cheryl
I'm just sending my support because I'm a blind person and missed your post....lol!
I DO have a patient partner whose doctor is considering the same thing as yours. Metastatic colon cancer in the lung. Prior lung resection. He's nailing him right now with Avastin and (nuts! can't remember the other). BUT, for the bigger stuff, his doctor is still considering RFA....
I figure that it's 'balls to the wall' (sorry....) with this stuff, and destroy it any way you can...
Hugs, Kathi0 -
Another no RFA just supportCherylHutch said:Thanks everyone!
I really do thank you all for your posts of support. I went in to both appts. today full of vim and viger and just assuming that the CAT scan will be no different than in August and that the RFA will take place, however many times we need it to. I am now home and having to absorb the information I got today. The way I see it, it's a good news/bad news sort of thing.
The CAT scan showed the two nodules/tumours that we were expecting... the largest is between 17-19mm (about 3/4" at it's largest), the second one was about 7mm (about 1/4"). There are also about 5 other nodules too small to determine size but all under 6mm.
Dr. Halkier said a few things that sort of have me confused. On the one hand, he explained that I had a bad cancer when it was first diagnosed and that I have now had metastastic disease (the spread of), so this means that I do have cancer cells in my body that are looking for a place to settle... and that some have obviously settled in my lungs, hence the nodules that we are now seeing pop up. He figures that there are 7 that he can find, with 5 of them being very small. There could be more but they just don't show up on the scans yet, which is very common with metastasis.
He then said that there comes a time when it would not be beneficial to me, as the patient, to be treating these nodules with surgery or RFA because more are popping up. He says that he gets many, many referrals for lung nodules to be treated with RFA but that he has to turn away 50% of the patients that are referred to him, because they have more than one or two nodules... once a person has multiple nodules then RFA does not become beneficial . He will only offer RFA if there is a chance of a cure OR that it will benefit them with maintaining a good quality of life. So I thought he was telling me all this info to break it to me that since I have multiple nodules, he has to say no to the RFA.
But, he then said that he is willing to do RFA on the two larger nodules/tumours... he didn't turn me down. He feels that the smaller nodules (under 6mm) are indicative of spread/mestastasis and at some point I will have to go on chemo.
So that's where I'm confused... if he thinks this is progressing, then why am I falling into his 50% of patients he is willing to do the RFA on? I know I have probably misunderstood something somewhere... and I blame that on when doctors talk about spread/incurable/etc. my mind goes into shock and can't accept that they are talking about ME... so I'm sure I missed something along the way.
Now, the next hurdle is going to be the actual procedure. You see, to do it, he needs to use the probe with the guidance of a CAT scan machine. Where there may be a bit of a problem is that I'm a full-figure gal and to do the procedure, there has to be enough room between the CAT scanner and my body for the probe and his hand. I asked him if this procedure was similar to when they did the biopsy on my adrenal gland and he said yes.. but apparently the probe/needle for the RFA is longer than the one for the adrenal, hence the need for leeway. So, do keep your fingers crossed (again) that this won't be what stops the procedure!
Soooo... I do have a question for those of you who have had the RFA procedure before. Did you have multiple nodules or only one or two when they decided you were eligible for the procedure? Debbie, you mentioned you have had both the lung surgery and RFA. I take it that this was done on two different lungs (surgery on one, RFA on the other?). Did you only have the two nodules or did you have more... and how are they now?
I guess what I'm really looking for is that someone had RFA (or surgery) and still had small nodules and what is the plan for them in the future.
Thanks!
Hugggggggs,
Cheryl
Cheryl, I know you are excited to move on, but those damned doctors just have a way of being confusing... probably they think they are being helpful, but we know the truth of it! I have decided to take the tact that if it's positive, then i'm going with it and the other stuff is just fluff that doesn't need my attention. I am in the same situation as you; my metastatic disease is in there somewhere, trying to organize, just hasn't been able to get a large enough foot hold to direct anything of interest at it yet. When it DOES, I plan on attacking with RFA or whatever else comes my way! I DON'T, however, plan on doing the just in case chemo, at least not for now. The last time it only dropped my numbers by 2.5 and that just wasn't enough for the *&^% I endured! The fact that the doc is willing to ablate those two nodules is GREAT news, and I am sure you want him to get moving on it yesterday! I know that once you get a comfortable wrap around this with your brain you will be onward and upward. Keep us posted.
mary0 -
Just stuff in generalmsccolon said:Another no RFA just support
Cheryl, I know you are excited to move on, but those damned doctors just have a way of being confusing... probably they think they are being helpful, but we know the truth of it! I have decided to take the tact that if it's positive, then i'm going with it and the other stuff is just fluff that doesn't need my attention. I am in the same situation as you; my metastatic disease is in there somewhere, trying to organize, just hasn't been able to get a large enough foot hold to direct anything of interest at it yet. When it DOES, I plan on attacking with RFA or whatever else comes my way! I DON'T, however, plan on doing the just in case chemo, at least not for now. The last time it only dropped my numbers by 2.5 and that just wasn't enough for the *&^% I endured! The fact that the doc is willing to ablate those two nodules is GREAT news, and I am sure you want him to get moving on it yesterday! I know that once you get a comfortable wrap around this with your brain you will be onward and upward. Keep us posted.
mary
Yep, Mary... you pretty much hit the nail on the head. I'm doing a little better this morning after having slept on it (well, 5 hours sleep). I figure, the fact that he is willing to do the RFA on the two nodules that have lit up the PET scans, this is a good thing because it means he thinks they can be treated. So, if he can actually ablate them, then we will have to wait and see what happens with the other tiny nodules... that would leave 5 of them, of which 2 of them are potential scar tissue (not cancer), 1 is unchanged in size since March, 1 has grown slightly and 1 was new in Aug. So technically, we will be keeping an eye on all of them, but in reality, there is only 1, possibly 2 that are showing any signs of growth.
So, I'm bouncing back a bit now and saying... "Well, fergitaboutit!" We have a plan for the two that we know are growing (albeit slowly) and we will get them ablated. The rest, we need to watch to see what they decide to do, but chances are there's only 1, possibly 2 that may start growing.
As for the "Well, many, many more might pop up in the future" is probably right according to the medical profession... on the other hand, maybe no more will show up, so why worry about the ones that aren't in existence yet?? That's like telling someone who is perfectly healthy that EVERYONE has cancer cells in their body and some of them might actually settle somewhere and take root... and some of them won't... so is the healthy person really suppose to worry about what "might" happen vs what is happening today?
So, I'm happy. I think it's a good thing that he has offered to do the RFA. If he turns away 50% of the people who are referred to him for the procedure and he has agreed to ablate two of the tumours, then I would say that he at least thinks it would benefit me and that it's not a hopeless cause.
But boy, oh, boy do I hate the emotional roller coaster this ride turns out to be!
Huggggggs,
Cheryl0 -
Roller CoasterCherylHutch said:Just stuff in general
Yep, Mary... you pretty much hit the nail on the head. I'm doing a little better this morning after having slept on it (well, 5 hours sleep). I figure, the fact that he is willing to do the RFA on the two nodules that have lit up the PET scans, this is a good thing because it means he thinks they can be treated. So, if he can actually ablate them, then we will have to wait and see what happens with the other tiny nodules... that would leave 5 of them, of which 2 of them are potential scar tissue (not cancer), 1 is unchanged in size since March, 1 has grown slightly and 1 was new in Aug. So technically, we will be keeping an eye on all of them, but in reality, there is only 1, possibly 2 that are showing any signs of growth.
So, I'm bouncing back a bit now and saying... "Well, fergitaboutit!" We have a plan for the two that we know are growing (albeit slowly) and we will get them ablated. The rest, we need to watch to see what they decide to do, but chances are there's only 1, possibly 2 that may start growing.
As for the "Well, many, many more might pop up in the future" is probably right according to the medical profession... on the other hand, maybe no more will show up, so why worry about the ones that aren't in existence yet?? That's like telling someone who is perfectly healthy that EVERYONE has cancer cells in their body and some of them might actually settle somewhere and take root... and some of them won't... so is the healthy person really suppose to worry about what "might" happen vs what is happening today?
So, I'm happy. I think it's a good thing that he has offered to do the RFA. If he turns away 50% of the people who are referred to him for the procedure and he has agreed to ablate two of the tumours, then I would say that he at least thinks it would benefit me and that it's not a hopeless cause.
But boy, oh, boy do I hate the emotional roller coaster this ride turns out to be!
Huggggggs,
Cheryl
Cheryl, I rode the roller coaster for a month not knowing whether I was going to live or die and until I went to Vandy I rode the roller coaster...I was told that there was no lymph node involvement. All this being new to me I was running 100 MPH with all decisions to be made and Dr appointments to make. I finally said enough. I take whatever comes and plan my battles from there. I never expect anything to go the way I plan it to so I am never sideswiped again. Been there done that, not fun to have a rug jerked out from under you. I have let God take my burdens and carry them for me and I have nothing to fear. I know that He has the final say in it all and if he wants me then I am ready, if he has things for me to do here then I am ready for that also. Cancer will not take me, the Lord will take me. It won't take you either, you have miracles coming your way....keep your head up.......God Bless ya....0 -
SurgeryCherylHutch said:Just stuff in general
Yep, Mary... you pretty much hit the nail on the head. I'm doing a little better this morning after having slept on it (well, 5 hours sleep). I figure, the fact that he is willing to do the RFA on the two nodules that have lit up the PET scans, this is a good thing because it means he thinks they can be treated. So, if he can actually ablate them, then we will have to wait and see what happens with the other tiny nodules... that would leave 5 of them, of which 2 of them are potential scar tissue (not cancer), 1 is unchanged in size since March, 1 has grown slightly and 1 was new in Aug. So technically, we will be keeping an eye on all of them, but in reality, there is only 1, possibly 2 that are showing any signs of growth.
So, I'm bouncing back a bit now and saying... "Well, fergitaboutit!" We have a plan for the two that we know are growing (albeit slowly) and we will get them ablated. The rest, we need to watch to see what they decide to do, but chances are there's only 1, possibly 2 that may start growing.
As for the "Well, many, many more might pop up in the future" is probably right according to the medical profession... on the other hand, maybe no more will show up, so why worry about the ones that aren't in existence yet?? That's like telling someone who is perfectly healthy that EVERYONE has cancer cells in their body and some of them might actually settle somewhere and take root... and some of them won't... so is the healthy person really suppose to worry about what "might" happen vs what is happening today?
So, I'm happy. I think it's a good thing that he has offered to do the RFA. If he turns away 50% of the people who are referred to him for the procedure and he has agreed to ablate two of the tumours, then I would say that he at least thinks it would benefit me and that it's not a hopeless cause.
But boy, oh, boy do I hate the emotional roller coaster this ride turns out to be!
Huggggggs,
Cheryl
Hi Cheryl: It sucks when you go in so sure you will hear one thing and then get thrown yet another curb ball, but you certainly have the right attitude, and one I very much share. My doctors have been very consistent in telling me, over and over again, we just don't see how this will help you. And I always respond, I do. Will new nodules appear? Who knows. Are all of the cancerous? Who knows. Are you going to make the decision to sit back and do nothing? Absolutely NOT. I had 15 nodules removed, 9 which were cancerous. All I know is that I felt much better after they were removed. If your radiologist is willing to do the RFA, then absolutely go for it. You can deal with the rest when, and if, it comes. Follow your heart and your intuition. You know better than anyone what you can handle, and it sounds to me as if you are in fine fighting form. God bless. Monica0 -
General thoughtsMonicaemilia said:Surgery
Hi Cheryl: It sucks when you go in so sure you will hear one thing and then get thrown yet another curb ball, but you certainly have the right attitude, and one I very much share. My doctors have been very consistent in telling me, over and over again, we just don't see how this will help you. And I always respond, I do. Will new nodules appear? Who knows. Are all of the cancerous? Who knows. Are you going to make the decision to sit back and do nothing? Absolutely NOT. I had 15 nodules removed, 9 which were cancerous. All I know is that I felt much better after they were removed. If your radiologist is willing to do the RFA, then absolutely go for it. You can deal with the rest when, and if, it comes. Follow your heart and your intuition. You know better than anyone what you can handle, and it sounds to me as if you are in fine fighting form. God bless. Monica
The part that I can't seem to get my head around is why doctors seem to think that it's imperative they drill home that 1) this illness is very bad and 2) once it reaches a certain stage where there are signs that it is spreading, then one has to face the fact that it is incurable and is only going to get worse over time.
I sooooo don't believe that and what freaks me out is I don't know if it's just me being in denial and me being naieve or if I am right and all of them have been in involved with medicine for so long they can't see that there might be something else.
I know some of you, a lot of you actually, are very religious and are very strong in your beliefs. I am not religious in the traditional sense, but I do have very strong beliefs... and that is that the mind is a lot more powerful than we give it credit for. Unfortunately, we don't give our minds credit, therefore don't use them to our best advantage. The cliche sayings "mind over manner" or "be careful for what you wish for, you may get it" all are based on the truth of how powerful our minds are. So, if we believe that we are going to work our way through this and come out healthy, happy and strong, then there's no reason we shouldn't. If we believe everything the doctors say (that this is serious, get your affairs in order, although we can't specify an exact time we can say you have 6 months - 2 years left, etc), then guess what is going to happen? Our minds will do what we put out there, so it's very important that we are careful about what we think, absorb and put out there.
So, it really bugs me when I'm going on my merry way and feeling great, only to have yet another doctor point out how ill I am. HELLO?? Do I LOOK ill? No. Is my illness preventing me from doing anything I want to do?? No. So please define exactly what "You are very ill" means!!
I am human... so although I have my own very strong beliefs, when I'm constantly being told by the medical profession that there will come a time when they won't be able to offer procedures.. I end up starting to question my own beliefs. The same beliefs that have gotten me to where I am today.
So far, we are still on track. I remember back in March/08 while we were waiting for the results of my adrenal biopsy, when I asked what it would mean if they came back positive... I was told it would mean that the cancer had spread, making it a Stage IV advanced colon cancer and that would not be good. When I pushed for defining what "not good" meant, I was given the 6 months - 2 years talk. Sure enough, the results came back positive and I almost fainted right then and there... how could my belief in the mind and thoughts be so wrong?? Well, turns out that it was still working because it was decided that I would benefit from having surgery to remove the adrenal gland.. and when they did, they got that out cleanly with no areas around affected. Now we are able to focus on the lung nodules... and a new doctor is brought into the mix and once again he is trying to convince me that this is really serious.
Enough of the "This is serious!!" I know that!! Having cancer at any stage is serious. I'm not making light of this at all... but come on, give a girl a break! I have been working with combining traditional medicine/treatments/doctors with my belief system and one or the other or the combination of both has done me well so far. Can we not just agree that I have cancer but we are working on either getting it out of my body or controlling it so that I'm just living with cancer and not dying from it??
Sorry for the vent... but it just bugs me that I'm having to go through this fear each time a new doctor comes on board. One should only have to go through that fear ONCE.. when you are first diagnosed. Then you should be able to get on with healing and living.
Hugggggs,
Cheryl0 -
I am with youCherylHutch said:General thoughts
The part that I can't seem to get my head around is why doctors seem to think that it's imperative they drill home that 1) this illness is very bad and 2) once it reaches a certain stage where there are signs that it is spreading, then one has to face the fact that it is incurable and is only going to get worse over time.
I sooooo don't believe that and what freaks me out is I don't know if it's just me being in denial and me being naieve or if I am right and all of them have been in involved with medicine for so long they can't see that there might be something else.
I know some of you, a lot of you actually, are very religious and are very strong in your beliefs. I am not religious in the traditional sense, but I do have very strong beliefs... and that is that the mind is a lot more powerful than we give it credit for. Unfortunately, we don't give our minds credit, therefore don't use them to our best advantage. The cliche sayings "mind over manner" or "be careful for what you wish for, you may get it" all are based on the truth of how powerful our minds are. So, if we believe that we are going to work our way through this and come out healthy, happy and strong, then there's no reason we shouldn't. If we believe everything the doctors say (that this is serious, get your affairs in order, although we can't specify an exact time we can say you have 6 months - 2 years left, etc), then guess what is going to happen? Our minds will do what we put out there, so it's very important that we are careful about what we think, absorb and put out there.
So, it really bugs me when I'm going on my merry way and feeling great, only to have yet another doctor point out how ill I am. HELLO?? Do I LOOK ill? No. Is my illness preventing me from doing anything I want to do?? No. So please define exactly what "You are very ill" means!!
I am human... so although I have my own very strong beliefs, when I'm constantly being told by the medical profession that there will come a time when they won't be able to offer procedures.. I end up starting to question my own beliefs. The same beliefs that have gotten me to where I am today.
So far, we are still on track. I remember back in March/08 while we were waiting for the results of my adrenal biopsy, when I asked what it would mean if they came back positive... I was told it would mean that the cancer had spread, making it a Stage IV advanced colon cancer and that would not be good. When I pushed for defining what "not good" meant, I was given the 6 months - 2 years talk. Sure enough, the results came back positive and I almost fainted right then and there... how could my belief in the mind and thoughts be so wrong?? Well, turns out that it was still working because it was decided that I would benefit from having surgery to remove the adrenal gland.. and when they did, they got that out cleanly with no areas around affected. Now we are able to focus on the lung nodules... and a new doctor is brought into the mix and once again he is trying to convince me that this is really serious.
Enough of the "This is serious!!" I know that!! Having cancer at any stage is serious. I'm not making light of this at all... but come on, give a girl a break! I have been working with combining traditional medicine/treatments/doctors with my belief system and one or the other or the combination of both has done me well so far. Can we not just agree that I have cancer but we are working on either getting it out of my body or controlling it so that I'm just living with cancer and not dying from it??
Sorry for the vent... but it just bugs me that I'm having to go through this fear each time a new doctor comes on board. One should only have to go through that fear ONCE.. when you are first diagnosed. Then you should be able to get on with healing and living.
Hugggggs,
Cheryl
Cheryl,
I couldnt agree more. I love reading your posts, they are so insightful and inspiring to me. You have a great way of putting your thoughts into words. I share your concerns and fears. I too, like you have my own belief system. I dont go to church, but I dont believe that makes me any less of a christian or a believer.
I dont understand the doctors either, sometimes I think they think its their duty to tell us how serious our situations are if for no other reason then to keep a family member from coming back and sueing them for something or another. With my ONC, he hasnt been as bold as your doctors seem to be, he on the on the other hand expresses himself more through actions. I knew the minute he gave me a hug it was bad. He didnt have to tell me. I do love my ONC to death though, he is a man of little words, but big actions.
If I had a dime for everytime I heard "but you look so healthy, or you dont even look sick" I would be rich. Its kind of funny because when I am feeling sorry for myself I find myself asking those same dang questions. I find myself having so many questions and no answers to any of them.
Can I ask you, have you truly gotten over the question "why me?". How do you deal with the anger when it creeps up? There are days (like today) where I would just give anything to have one day of normalness (is that even a word..LOL) I feel like I am on a merry go round (one that is not so merry) just watching everyone else live their lives and I am just such going round and round and round not knowing when it will end and what will happen when it does stop? Will that be when I am dead? Will it be when the cancer is gone? I know I am sounding negative, guess just having one of those days. The holidays coming up dont seem to help.
Well I will stop whinning, dont mean to depress anyone, just venting too.
Thanks for listening
Beth0 -
prayers for youCherylHutch said:General thoughts
The part that I can't seem to get my head around is why doctors seem to think that it's imperative they drill home that 1) this illness is very bad and 2) once it reaches a certain stage where there are signs that it is spreading, then one has to face the fact that it is incurable and is only going to get worse over time.
I sooooo don't believe that and what freaks me out is I don't know if it's just me being in denial and me being naieve or if I am right and all of them have been in involved with medicine for so long they can't see that there might be something else.
I know some of you, a lot of you actually, are very religious and are very strong in your beliefs. I am not religious in the traditional sense, but I do have very strong beliefs... and that is that the mind is a lot more powerful than we give it credit for. Unfortunately, we don't give our minds credit, therefore don't use them to our best advantage. The cliche sayings "mind over manner" or "be careful for what you wish for, you may get it" all are based on the truth of how powerful our minds are. So, if we believe that we are going to work our way through this and come out healthy, happy and strong, then there's no reason we shouldn't. If we believe everything the doctors say (that this is serious, get your affairs in order, although we can't specify an exact time we can say you have 6 months - 2 years left, etc), then guess what is going to happen? Our minds will do what we put out there, so it's very important that we are careful about what we think, absorb and put out there.
So, it really bugs me when I'm going on my merry way and feeling great, only to have yet another doctor point out how ill I am. HELLO?? Do I LOOK ill? No. Is my illness preventing me from doing anything I want to do?? No. So please define exactly what "You are very ill" means!!
I am human... so although I have my own very strong beliefs, when I'm constantly being told by the medical profession that there will come a time when they won't be able to offer procedures.. I end up starting to question my own beliefs. The same beliefs that have gotten me to where I am today.
So far, we are still on track. I remember back in March/08 while we were waiting for the results of my adrenal biopsy, when I asked what it would mean if they came back positive... I was told it would mean that the cancer had spread, making it a Stage IV advanced colon cancer and that would not be good. When I pushed for defining what "not good" meant, I was given the 6 months - 2 years talk. Sure enough, the results came back positive and I almost fainted right then and there... how could my belief in the mind and thoughts be so wrong?? Well, turns out that it was still working because it was decided that I would benefit from having surgery to remove the adrenal gland.. and when they did, they got that out cleanly with no areas around affected. Now we are able to focus on the lung nodules... and a new doctor is brought into the mix and once again he is trying to convince me that this is really serious.
Enough of the "This is serious!!" I know that!! Having cancer at any stage is serious. I'm not making light of this at all... but come on, give a girl a break! I have been working with combining traditional medicine/treatments/doctors with my belief system and one or the other or the combination of both has done me well so far. Can we not just agree that I have cancer but we are working on either getting it out of my body or controlling it so that I'm just living with cancer and not dying from it??
Sorry for the vent... but it just bugs me that I'm having to go through this fear each time a new doctor comes on board. One should only have to go through that fear ONCE.. when you are first diagnosed. Then you should be able to get on with healing and living.
Hugggggs,
Cheryl
Cheryl,
I, too, somehow missed your first post about this, so I'm sorry not to have offered support earlier. I have not had as much heavy news as you have had to absorb, so I can only imagine what it is like. What I do know is that I DO believe in God very much, and I know He will wrap His arms around you every day, no matter what that day brings.
I'll be praying for you, and one of the things I'll be praying for is that nothing ever takes that positive, perky attitude away from you. I LOVE your spirit. Tell the doctors to quit trying to rain on your parade!
*hugs*
Gail0 -
The journeytootsie1 said:prayers for you
Cheryl,
I, too, somehow missed your first post about this, so I'm sorry not to have offered support earlier. I have not had as much heavy news as you have had to absorb, so I can only imagine what it is like. What I do know is that I DO believe in God very much, and I know He will wrap His arms around you every day, no matter what that day brings.
I'll be praying for you, and one of the things I'll be praying for is that nothing ever takes that positive, perky attitude away from you. I LOVE your spirit. Tell the doctors to quit trying to rain on your parade!
*hugs*
Gail
Thanks Beth and Gail...
Gail, I realize you and many others here do believe in God very much and I don't doubt that this brings much comfort and I would never take that away from someone. If it's something you feel comfortable, and better yet, feel you can turn to in a time of crisis or need, then more power to you! Myself, I can't believe in something that is not tangible that is all built around having "faith that it is". But hey, this is not a criticism, it just explains me... I don't have blind faith So that's when others post that they are praying for someone, or will include them in their prayers, you don't hear that from me... you will hear "I'm sending you positive, healing thoughts" because with my beliefs, what you put out there will be received tenfold, likewise, will come back tenfold. I see prayer as being parallel to thought... when you pray for someone, you are actually sending your thoughts to God. When I send my thoughts, they are going out to the Universe. For all we know, God and the Universe are all one and the same thing, it's just that we, as individuals, disseminate the information differently in our brains
Hahaha... ok, I didn't really mean to go off on a tangent there because I know there are two things in life one should never discuss... religion and politics . Whether you are a Democrat or a Republican, whether you believe in God or something else... the two will never agree with each other's beliefs So the discussion would go on forever with no one changing sides and no solution to be found
You know... I have read here on the boards, and of course, articles in magazines, newspapers, etc. where people have multiple illnesses. They may have diabetes and are on insulin, osteoarthritis, neuropathy, kidney disease, heart disease and a cancer... and they are being treated for all their ailments and no one is telling them there's only so much we can do. Then you get someone like me who's only complaint is arthritis in my knees and of course, the cancer. I have no symptoms from the cancer, although you will hear me cursing my knees in the mornings ... and yet my doctors seem to think I need to be told we'll try this and that, but you know...
I am NOT going to die. I am 53 years young, I have so many wild and crazy friends who are all out to support me, I am active in various theatre groups, I have this huge Letters To Santa project that we do every year (thereindeerbarn.com for any of you with little ones) with volunteers from around the world and I still have so many more things to accomplish on this earth. I think I told you that back in October my friends had a big old Celebration of Life and Friendship party and 21 of them put on a wonderful Tribute show in honour of me. A video was made of the show and I have already given a copy of it to my GP and I will be giving a copy of it to my oncologist (who I adore)... and it's just a reminder to doctors everywhere that we are people. People with full lives, loves and friends/family who love us. We are not just a patient chart number... a case that follows standard protocols. Sometimes I think they need this littld nudge/kick to remind them that patients are people too... and if they have a different belief system than the doctors, then that should be respected.
I admire and respect doctors and specialists diagnosis', prognosis' and treatment recommendations... but a lot of that is based on opinions... and that is something we all have! Opinions are not necessarily based on fact. So, I respect their and anyone's opinions, and likewise, would appreciate that they respect mine. If I say I'm not going to die, and we are going to do every treatment known to mankind to beat this monster into submission, then I don't think there should be any argument or discussion to try and have me change my opinion.
I'm not saying any of my doctors have tried to do that... but sometimes it's just a feeling I get. I think that they are so washed in the medical school training/dogma that it's almost impossible for them to let go or ease up on how/what they've been taught and be open to not everyone follows the same path.
Cheryl0 -
I believeCherylHutch said:The journey
Thanks Beth and Gail...
Gail, I realize you and many others here do believe in God very much and I don't doubt that this brings much comfort and I would never take that away from someone. If it's something you feel comfortable, and better yet, feel you can turn to in a time of crisis or need, then more power to you! Myself, I can't believe in something that is not tangible that is all built around having "faith that it is". But hey, this is not a criticism, it just explains me... I don't have blind faith So that's when others post that they are praying for someone, or will include them in their prayers, you don't hear that from me... you will hear "I'm sending you positive, healing thoughts" because with my beliefs, what you put out there will be received tenfold, likewise, will come back tenfold. I see prayer as being parallel to thought... when you pray for someone, you are actually sending your thoughts to God. When I send my thoughts, they are going out to the Universe. For all we know, God and the Universe are all one and the same thing, it's just that we, as individuals, disseminate the information differently in our brains
Hahaha... ok, I didn't really mean to go off on a tangent there because I know there are two things in life one should never discuss... religion and politics . Whether you are a Democrat or a Republican, whether you believe in God or something else... the two will never agree with each other's beliefs So the discussion would go on forever with no one changing sides and no solution to be found
You know... I have read here on the boards, and of course, articles in magazines, newspapers, etc. where people have multiple illnesses. They may have diabetes and are on insulin, osteoarthritis, neuropathy, kidney disease, heart disease and a cancer... and they are being treated for all their ailments and no one is telling them there's only so much we can do. Then you get someone like me who's only complaint is arthritis in my knees and of course, the cancer. I have no symptoms from the cancer, although you will hear me cursing my knees in the mornings ... and yet my doctors seem to think I need to be told we'll try this and that, but you know...
I am NOT going to die. I am 53 years young, I have so many wild and crazy friends who are all out to support me, I am active in various theatre groups, I have this huge Letters To Santa project that we do every year (thereindeerbarn.com for any of you with little ones) with volunteers from around the world and I still have so many more things to accomplish on this earth. I think I told you that back in October my friends had a big old Celebration of Life and Friendship party and 21 of them put on a wonderful Tribute show in honour of me. A video was made of the show and I have already given a copy of it to my GP and I will be giving a copy of it to my oncologist (who I adore)... and it's just a reminder to doctors everywhere that we are people. People with full lives, loves and friends/family who love us. We are not just a patient chart number... a case that follows standard protocols. Sometimes I think they need this littld nudge/kick to remind them that patients are people too... and if they have a different belief system than the doctors, then that should be respected.
I admire and respect doctors and specialists diagnosis', prognosis' and treatment recommendations... but a lot of that is based on opinions... and that is something we all have! Opinions are not necessarily based on fact. So, I respect their and anyone's opinions, and likewise, would appreciate that they respect mine. If I say I'm not going to die, and we are going to do every treatment known to mankind to beat this monster into submission, then I don't think there should be any argument or discussion to try and have me change my opinion.
I'm not saying any of my doctors have tried to do that... but sometimes it's just a feeling I get. I think that they are so washed in the medical school training/dogma that it's almost impossible for them to let go or ease up on how/what they've been taught and be open to not everyone follows the same path.
Cheryl
When my oncologist answered that question that I stupidly asked and I got the incurable, 2 1/2 years, etc., I was absolutely devastated. I went home, cried a river, got up the next morning, called his nurse and explained that I was back on my feet and that I was going to be their victory. Every time I see my doctor, I remind him of the people I know who have beaten this at stage iv and let him know I'm going to around for a long time. I've almost taken it as my personal challenge to make him believe. It drives me crazy that we're all supposed to fit in this cookie cutter mold. I plan on being here until the cows come home--and since I don't have any cows, they won't be coming home anytime soon! Don't know if that made any sense at all, but I'm having a colonoscopy at 7:00 in the morning and the prep may have rattled my brain (along with some other things)!!
Rebecca0 -
You go girl!!! And I'm coming with you!!! I don't have any cows either, so we both will be here until the cows come home... and if one day we both move to a farm and have cows, then we'll stick around until politicians see eye to eye!!! Ok, maybe that would be too long , because that will NEVER happenrrob said:I believe
When my oncologist answered that question that I stupidly asked and I got the incurable, 2 1/2 years, etc., I was absolutely devastated. I went home, cried a river, got up the next morning, called his nurse and explained that I was back on my feet and that I was going to be their victory. Every time I see my doctor, I remind him of the people I know who have beaten this at stage iv and let him know I'm going to around for a long time. I've almost taken it as my personal challenge to make him believe. It drives me crazy that we're all supposed to fit in this cookie cutter mold. I plan on being here until the cows come home--and since I don't have any cows, they won't be coming home anytime soon! Don't know if that made any sense at all, but I'm having a colonoscopy at 7:00 in the morning and the prep may have rattled my brain (along with some other things)!!
Rebecca
You and I and all the rest of the Stage IV's on this board, are going to have to start planning our purchase of a dairy farm!!! But we'll always leave two cows out every night... just to be on the safe side
Huggggggs,
Cheryl0 -
cowsCherylHutch said:You go girl!!! And I'm coming with you!!! I don't have any cows either, so we both will be here until the cows come home... and if one day we both move to a farm and have cows, then we'll stick around until politicians see eye to eye!!! Ok, maybe that would be too long , because that will NEVER happen
You and I and all the rest of the Stage IV's on this board, are going to have to start planning our purchase of a dairy farm!!! But we'll always leave two cows out every night... just to be on the safe side
Huggggggs,
Cheryl
my mom has cows and they are at home and I'm still on this board and mom's still kickin.0
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