THE TALK
I think its all BS, Like Buzzard said, its not up to them its up to GOD!
Its been a rough day!
I did get my healing bag in the mail so thank you so very much Kay!
I just never expected this, dont know why, not like I am special or anything. I just thought I had my age on my side why that would make any difference, it just did to me. I am to young to have cancer, well thats what I was telling myself. Other then cancer I am healthy, now isnt that funny.
I have decided not to tell my daughter because I am going to do everything I can to prove them wrong. She is young (17) but she is bipolar and I dont think she could handle this kind of news.
Well going to go now and sit in my hottub and think about life.
God Bless
Comments
-
Thinking of You!
Dear Beth,
You are special, Beth. There are many stage 4 individuals on this site that are cancer free after many, many years of having procedures similar to yours. And, new protocols are being developed as we speak.
After you have taken a few days to regroup, focus on proving your doctor wrong. Your spirit and resolve is so much stronger than your disease.
Thinking of you and your family.
Hugs,
Kay0 -
So Sorry
Thats pretty much what the doctor told my husband, I am so scared for him and myself being left alone to live with out him is something i don't want to do. I just keep praying that he will get well but he dosen't feel that way. You never know things could change and the cancer could stay away forever. My husband has cancer everywhere no surgery just chemo but for you the cancer is gone for now and that is a positive thing I wish that was the case for my husband but it is not. I will keep you in my prayers .
MICHELLE0 -
You needed that statement to get the people at SS moving; just remember that. Doesn't mean you WILL be gone in 20 months, just tells the government people you will so you don't have to wait 20 months to get your file processed. Remind your onc of the fact that you appreciate the letter for SS, but you expect her to continue fighting as if the information in that letter were a lie, as you know it to be. I have never been given a time limit, but I was definitely told to get my affairs in order prior to my initial surgery and I did. I don't regret it, nor do I think "whew, now I can die". After my last surgery to remove my recurrent cancer from my ovaries along with various miscellaneous body parts, the statistics were that I would only have 17 months to live. Well, here it is 30 months later and I'm still here. I will be celebrating 5 years post diagnosis on 08/12/08 and am planning to have a BIG party! It certainly hasn't been an easy time, as many others here can attest to, but because I am still here, it has been worth it. I know my time will come at some time in the future, but it will come after I have given life everything I have to offer; possibly well into my 90s. Enjoy the soak, get your head back together, and put on your fighting gloves.
mary0 -
Stage 4, smage 4....
As many here on this board can tell you, especially those with stage 4, it's to only be used as treatment guidelines...it just means you have a greater chance than other stages to get it again, and need more treatment.
I was given 6 months to live. 4 years ago. Same 'get your affairs in order'. Which, BTW, is not a bad thing for everyone to do, having to manage my ex-hubby's death 2 years ago with no will, WHAT a MESS!!!!
To top it, I was only a stage 3!!!!! So it's not just stage 4 people that get to have all of the 'fun' of picking their heart up off the floor...
The longer you stay cancer free, the better. But, you know that...
SSA needs to think you are at death's door, so they will take a serious look at you...this letter should help, although, did you see the post recently from dixchi about ACS teaming up with SSA???
I'm wrapping my arms around you, dear soul!
Hugs, Kathi0 -
HA.
That just gives you a date to throw a party. I've found that the more things my mom has to look forward to the better her outlook is. My dad said the other day to my mom, "Next year is our 40th anniversary." My mom said, "Do you think I'll be here, the doctor said it's incurable." My dad replied, "It isn't up to him."
Give your worries to God. Wish I had a hot tub.0 -
Beth!
Big Huggggs, Beth! As I was reading your message, my heart dropped and that wave of panic went over me... it was as if I was going through this with you, AS you!! Although the radiologist on Friday didn't give me a date or "so many months", that is exactly the feeling I got from him and it put me in a total anxiety funk for 5 days after our visit.
I'm sure you can relate when I say, there is no thinking straight when you are in that panic, wave of fear that seems to start in the cheeks and hit big time in the chest, then down through the stomach and legs. NOTHING helps and all you can think of is what has been said or written. 20 months! 20 months! 20 months!
Ok... you and I both need to take a deep breath... and another one. Let's look at this as objectively as we can.
1) Your surgeon did the lung surgery just the other week. If it was totally hopeless, there is no way they would go ahead with the surgery. Surgery is risky, costly and there are so many people needing surgery time, the surgeons/doctors do not need to make work for themselves. If you truly were on your last months, they would have not suggested surgery, let alone gone through with it.
2) Chemo for the rest of your life. Ok, you and I had a talk in private messaging... to take the chemo or not. Of course it is your decision, but I know myself, I would take it... anything to keep the cancer in submission. It's true... Stage IV is "incurable", meaning it could pop up at any time, anywhere in the body. So the fight includes keeping it under control... and chemo will help with that. Remember, chemo is "systematic", meaning when you are taking it, it goes through your whole system, not just the area that might be causing a problem. So if there are any pesky free-roaming cancer cells floating around in your system, the chemo will get them before they have a chance to land. THAT is why you may have chemo now... to keep you in a NED state.
3) Attitude/beliefs/fighting spirit. This plays such a huge role in continuing the fight. What these doctors who rely on medical stats/patterns don't realize is that every time they throw around the words "incurable", "will reoccur", etc., it breaks the spirit a little more each time. Once they've broken it to the point we don't believe there's any hope... then everything falls apart. And that's when we go downhill and can't climb back up.
The interventional radiologist I saw on Friday put me into a total funk because as he said, "I'm going to be very blunt here and I'm sure what I have to tell you does not come as a surprise." With that, he then explained about how he has to turn 50% of people who are referred to him away because he will only do the procedure if there's a possibility of a cure or it will "maintain a good quality of life"... of which he then said he knew that I knew there was not possibility of a cure for me since I was Stage IV. Well, that DID come as a surprise to me. Yes, I knew I was stage IV and yes I knew there was a possibility of recurrence... but as long as I'm willing to fight and do the treatments, then we could keep it at bay and possibly be NED. But he figures that the cancer will get me in the end.
After all that negative talk, he then offered to do the RFA on the two tumours (the others being too small to do anything yet). Once he realized I'm a fighter and despite everything he said, I WANT the RFA and I want it again if these small spots change... I felt a slight change in his attitude.
He agreed that, although I was a Stage IV, incurable and now have mets in my lungs, no one knows or can put a time limit on a life. He says that we may still be treating me when I turn 80... then again, it could take a turn for the worst in the next 12 months. He then told me and my friend who was with me that his sister was diagnosed with Ovarian cancer. She went through the chemo treatment and then they stopped it, said it was not doing any good anymore and basically gave her a couple of months to live. That was 3 1/2 years ago. She has not had chemo or treatments since and she is doing just fine right now... and still considered to have cancer.
So, do NOT let yourself go into a funk over this letter. Easier said that done, for sure. It took me 5 days to get out of my funk. But I was driving to the mall yesterday to try and finish some Christmas shopping and it suddenly hit me... "HEY! Yes, I have lung mets... but they are so small and growing so agonizingly slow that the docs are scratching their heads. My PET scans have been clean, except for these 2 spots. My CEA levels are below normal at 1.4. So just what is it that I'm suppose to be so upset about and believe that death is around the corner???" My "stats" are looking better than a lot of healthy people I know who don't even know... maybe they have cancer and just don't know it yet.
So take some deep breaths... and look at those words "20 months" as just technology to get the insurance started. Remember I told you my beliefs are how powerful our minds and thoughts are? And to be careful for what you put out there because you will get it back tenfold? Well, last week the problem was financial and how/what are you going to do about it. You knew from others stories that getting this SSA could take up to 2 years to get.. so I bet somewhere, maybe more than once, a thought has seriously gone through your mind, "What can I do or what do I need to speed this process up?? I can't wait 2 years to get financial help!!!" Well, the thought was put out there and the solution came back in the form of the ONC doing a letter for you and making it sound desperate. This will definitely move the process along... which is exactly the thought that was put out there. It does not mean that you ARE going to die in 20 months... it means that 20 months will move the SSA along because you needed something to get them moving.
Now... time to get some more thoughts out there. Healthy thoughts ... about what you are going to be doing 5 years from now. What are your goals? How about 10 years from now? What goals do you want to have accomplished in the year 2018? Too bad you didn't live closer... we could get together and put "Vision Boards" together... where you put pictures of how you see yourself, where you see yourself, what goals you see yourself doing... and give yourself a year, even a specific date as to when you want all of this to come true.
Huggggggs,
Cheryl0 -
You got the letter
I can of course understand your reaction. But I agree with 'mscolon' and others. The important thing is you got the letter. I would focus on the fact that they had to put something concrete (and probably something conservative/pessimistic) in the letter to get you the support you need. That (in my opinion) has nothing to do with you or your future. It is just a bureucratic (sp?) game.
This board is full of people who are beating the odds. And in the meantime, treatments keep advancing (both traditional and alternative). This fill me with hope. I'm stage IV (I guess -- I prefer not to use the term). This month is 6 years since my diagnosis (diagnosed as Stage III). I've had a few recurrences. But, I've already beat the odds in terms of official "textbook" prognosis when I was diagnosed. And I've seen my 2 young boys grow into 2 fine young men (well, still adolescents, but you know what I mean!). I am content to live with a "chronic disease model" -- doing some tx when I need to, enjoying the non-treatment times between as fully as I can. I have such great role models on this board.
Best wishes,
Tara0 -
Just thought of something...
I agree 100% with what Tara said... and she is living proof! What the textbook "says" and what the studies/statistics (which are 5 years out of date by the time they are published) "say"... there are way too many people DX at Stage IV, or DX'd at Stage III and then became Stage IV because they had a recurrence... that are still around to talk about it. That goes completely against what the "textbooks" say, so they don't mention it. After all, if more and more people are living with the disease rather than dying from the disease, it would mean they have to redo their stats and studies! It will be a good 5 years or more down the road before we see the stats change.
We all probably can remember when AIDS first surfaced. All the misinformation we had about it in the early 80s, but no one had any studies or stats, so the misinformation was what was used. It was a reality... if someone was infected with HIV, it WAS a death sentence and everyone died from it within 2 years of being diagnosed. That was the reality back then. But, drug treatments have changed, they now have a lot of different drug "cocktails" (whereas back then it was basically treated with one drug - AZT)... and people are LIVING with AIDS, not DYING from it.
Anywho... I digress... we aren't talking about AIDs here on this board but Colon Cancer and paperwork. So back to what I thought of while I was just in the shower... my Long Term Disability Insurance company would send out forms every six months that my doctor would have to fill out to explain why he/she thought I wasn't able to go back to work. It was a formality, but the forms had to be filled out, even though the "condition" hadn't changed. Well, the last time he had to fill out the forms was last April. I had just recently had my PET scan that revealed the cancer was in my adrenal gland and a spot on my lung. So, we were in the planning stages of scheduling surgery for the adrenal gland and then possible surgery for the lung (no talk of RFA) at this point.
It was my GP who was filling out the insurance forms and he said to me, "Cheryl... I'm going to use some words on this form that you are not going to like and they are probably going to scare you. I don't want you to pay any attention to them. I am not lying on the form, if I did, I would lose my license to practise, but I am going to be very blunt on the form and I can guarantee you the insurance company will back off once they see these words." He used the words "Advanced Colon Cancer, Stage IV", "Metasticized" and then something about the planned treatment which was surgery and possible chemo after surgery. That was back in April/08... sure enough, the insurance company hasn't bothered me since.
Now, my Employee Benefits case worker did send me an email the other day... but all she wanted to know was 1) how was I feeling and 2) was there anything she could do for me, did I have any questions, and was everything ok with my benefits (insurance, medical, dental, etc)? The last time I talked to her back in the spring, she had said that she wanted to bring up something that was a very sensitive subject. If ever the doctors give me the "6 months - 2 years to live" prognosis, then I could apply to one of the insurance benefits we have as employees and get a $50,000 payout to do with as we please. (The only catch to that is, I heard from another friend who was given that prognosis and she did take the $50,000 and she is still alive... past the 2 years, so now the insurance company wants the money back! LOL!! She says they can come and try and get it from her .
Soooo, doctors do know they have to play hardball on these forms, otherwise the patient gets nowhere with getting the insurance in place.
Geez, I sure can turn one thought into a heck of a long post, can't I???
Hugggggs,
Cheryl0 -
What a bunch of crock....
I am really trying to be ladylike, but it infuriates me when I hear things like this. First of all, no two cases are alike. Second of all, you are currently cancer free and what they did not tell you is that colorectal cancer is one of the cancers that responds very well to surgery. Yes, you may (or not) have other metastaces, but you will deal with those when, and if, it comes, and with the same determination and tenacity you have shown so far to beat this disease.
When I was diagnosed in January 2006, my doctor told me I had 6 months without treatment. Three chemos, 4 surgeries later, I am still here three years later and just celebrated my son´s third birthday. Each time something was surgically removed, something else showed up, but you just keep chasing it, if at all possible. I now have one met to the hip bone, one spot in the lungs, and 5 mets to liver (recurrence one year later). I just had my hip bone exablated, am looking at doing another liver resection of the liver, and am still pursuing removing the last spot to the lung.
What I am trying to say is that what the doctors are telling are based on statistics, and not on the person they are treating. They have to tell the truth as they see it, but it does not particularly mean that this will be YOUR truth. You go girl, prove them wrong. Monica0 -
Your RightKanort said:Thinking of You!
Dear Beth,
You are special, Beth. There are many stage 4 individuals on this site that are cancer free after many, many years of having procedures similar to yours. And, new protocols are being developed as we speak.
After you have taken a few days to regroup, focus on proving your doctor wrong. Your spirit and resolve is so much stronger than your disease.
Thinking of you and your family.
Hugs,
Kay
I am special, Special ED..LOL Just kidding. Thank you Kay and I got the healing and blessing bag, thanks so much, they are both just beautiful.
God Bless
Beth0 -
Thankstootsie1 said:*hugging you*
Doctors can only tell you their best guesses on these things. As you said, it's ultimately up to God. People are not guaranteed a certain amount of time here on earth, but the way they live it is up to them.
*hugs*
Gail
Thanks Michelle and Gail, I appreciate your posts and your kind words. I am going to fight and do all I can to keep this beast away. It has just been a rough few days.
God Bless
Beth0 -
Goal Accomplishedmsccolon said:You needed that statement to get the people at SS moving; just remember that. Doesn't mean you WILL be gone in 20 months, just tells the government people you will so you don't have to wait 20 months to get your file processed. Remind your onc of the fact that you appreciate the letter for SS, but you expect her to continue fighting as if the information in that letter were a lie, as you know it to be. I have never been given a time limit, but I was definitely told to get my affairs in order prior to my initial surgery and I did. I don't regret it, nor do I think "whew, now I can die". After my last surgery to remove my recurrent cancer from my ovaries along with various miscellaneous body parts, the statistics were that I would only have 17 months to live. Well, here it is 30 months later and I'm still here. I will be celebrating 5 years post diagnosis on 08/12/08 and am planning to have a BIG party! It certainly hasn't been an easy time, as many others here can attest to, but because I am still here, it has been worth it. I know my time will come at some time in the future, but it will come after I have given life everything I have to offer; possibly well into my 90s. Enjoy the soak, get your head back together, and put on your fighting gloves.
mary
Mary,
Your right and the letter did meet its purpose. SSA is now classifing my case as "TERI" which means Terminal Illness, which means they only have a few days in which to decide on my case. From what I have read and heard its pretty much a slam dunk as far as being eligible and the benefits started. But I was trying to get the back pay from when I first applied back in June 2007. Either way, is fine with me, if I get the back pay that would be wonderful, but if not at least the benefits will or should begin soon. So the letter did the trick you might say.
It and they just scared the heck out of me. Through all of this I guess I never thought dieing was an issue, why I dont know, just thought I had cancer, had to have surgery, radiation, and chemo and then it would be gone. Dieing never really entered my mind(well serious thoughts of it anyway) until yesterday. So it was just like a slap in the face, and it kept my head spinning for quite some time.
Now that I am feeling better, I am not as upset. I just have to do whatever I have to do to get rid of this beast. Im not going down or anywhere without a fight.
Thanks for your support.
God Bless
Beth0 -
Only God Knowskrystiesq said:HA.
That just gives you a date to throw a party. I've found that the more things my mom has to look forward to the better her outlook is. My dad said the other day to my mom, "Next year is our 40th anniversary." My mom said, "Do you think I'll be here, the doctor said it's incurable." My dad replied, "It isn't up to him."
Give your worries to God. Wish I had a hot tub.
I agree with your dad, only God can make that call, and when he does then he does, but it will be God that takes me not the cancer and again I believe I am quoting Buzzard. I wanna hear all about the 40th anniversary party next year, and hear about the big smile on both your parents faces as they celebrate!
God Bless
Beth0 -
PANICCherylHutch said:Beth!
Big Huggggs, Beth! As I was reading your message, my heart dropped and that wave of panic went over me... it was as if I was going through this with you, AS you!! Although the radiologist on Friday didn't give me a date or "so many months", that is exactly the feeling I got from him and it put me in a total anxiety funk for 5 days after our visit.
I'm sure you can relate when I say, there is no thinking straight when you are in that panic, wave of fear that seems to start in the cheeks and hit big time in the chest, then down through the stomach and legs. NOTHING helps and all you can think of is what has been said or written. 20 months! 20 months! 20 months!
Ok... you and I both need to take a deep breath... and another one. Let's look at this as objectively as we can.
1) Your surgeon did the lung surgery just the other week. If it was totally hopeless, there is no way they would go ahead with the surgery. Surgery is risky, costly and there are so many people needing surgery time, the surgeons/doctors do not need to make work for themselves. If you truly were on your last months, they would have not suggested surgery, let alone gone through with it.
2) Chemo for the rest of your life. Ok, you and I had a talk in private messaging... to take the chemo or not. Of course it is your decision, but I know myself, I would take it... anything to keep the cancer in submission. It's true... Stage IV is "incurable", meaning it could pop up at any time, anywhere in the body. So the fight includes keeping it under control... and chemo will help with that. Remember, chemo is "systematic", meaning when you are taking it, it goes through your whole system, not just the area that might be causing a problem. So if there are any pesky free-roaming cancer cells floating around in your system, the chemo will get them before they have a chance to land. THAT is why you may have chemo now... to keep you in a NED state.
3) Attitude/beliefs/fighting spirit. This plays such a huge role in continuing the fight. What these doctors who rely on medical stats/patterns don't realize is that every time they throw around the words "incurable", "will reoccur", etc., it breaks the spirit a little more each time. Once they've broken it to the point we don't believe there's any hope... then everything falls apart. And that's when we go downhill and can't climb back up.
The interventional radiologist I saw on Friday put me into a total funk because as he said, "I'm going to be very blunt here and I'm sure what I have to tell you does not come as a surprise." With that, he then explained about how he has to turn 50% of people who are referred to him away because he will only do the procedure if there's a possibility of a cure or it will "maintain a good quality of life"... of which he then said he knew that I knew there was not possibility of a cure for me since I was Stage IV. Well, that DID come as a surprise to me. Yes, I knew I was stage IV and yes I knew there was a possibility of recurrence... but as long as I'm willing to fight and do the treatments, then we could keep it at bay and possibly be NED. But he figures that the cancer will get me in the end.
After all that negative talk, he then offered to do the RFA on the two tumours (the others being too small to do anything yet). Once he realized I'm a fighter and despite everything he said, I WANT the RFA and I want it again if these small spots change... I felt a slight change in his attitude.
He agreed that, although I was a Stage IV, incurable and now have mets in my lungs, no one knows or can put a time limit on a life. He says that we may still be treating me when I turn 80... then again, it could take a turn for the worst in the next 12 months. He then told me and my friend who was with me that his sister was diagnosed with Ovarian cancer. She went through the chemo treatment and then they stopped it, said it was not doing any good anymore and basically gave her a couple of months to live. That was 3 1/2 years ago. She has not had chemo or treatments since and she is doing just fine right now... and still considered to have cancer.
So, do NOT let yourself go into a funk over this letter. Easier said that done, for sure. It took me 5 days to get out of my funk. But I was driving to the mall yesterday to try and finish some Christmas shopping and it suddenly hit me... "HEY! Yes, I have lung mets... but they are so small and growing so agonizingly slow that the docs are scratching their heads. My PET scans have been clean, except for these 2 spots. My CEA levels are below normal at 1.4. So just what is it that I'm suppose to be so upset about and believe that death is around the corner???" My "stats" are looking better than a lot of healthy people I know who don't even know... maybe they have cancer and just don't know it yet.
So take some deep breaths... and look at those words "20 months" as just technology to get the insurance started. Remember I told you my beliefs are how powerful our minds and thoughts are? And to be careful for what you put out there because you will get it back tenfold? Well, last week the problem was financial and how/what are you going to do about it. You knew from others stories that getting this SSA could take up to 2 years to get.. so I bet somewhere, maybe more than once, a thought has seriously gone through your mind, "What can I do or what do I need to speed this process up?? I can't wait 2 years to get financial help!!!" Well, the thought was put out there and the solution came back in the form of the ONC doing a letter for you and making it sound desperate. This will definitely move the process along... which is exactly the thought that was put out there. It does not mean that you ARE going to die in 20 months... it means that 20 months will move the SSA along because you needed something to get them moving.
Now... time to get some more thoughts out there. Healthy thoughts ... about what you are going to be doing 5 years from now. What are your goals? How about 10 years from now? What goals do you want to have accomplished in the year 2018? Too bad you didn't live closer... we could get together and put "Vision Boards" together... where you put pictures of how you see yourself, where you see yourself, what goals you see yourself doing... and give yourself a year, even a specific date as to when you want all of this to come true.
Huggggggs,
Cheryl
Cheryl,
I was in a major panic, had all kinds of emotions none of which I can explain. Like I had said in another post, I had never even really thought this would kill me, much less in 20 months. I know all of this came up because of needing that letter, but I never expected it to hit me as hard as it did. I just turned 40, to me my life is just starting, my daughter is married and out of the house, I am very stable in my career and relationship, its the time in my life that I thought would be all about having fun and really enjoying my life for the first time in my life. I spent all of my years working and doing all I had to do to get to where I could say I was comfortable and now this???? Talk about being mad!!! Doesnt do any good to say life isnt fair, but come on its just NOT FAIR!
I like the points you made in your post. I agree I dont think they would have done the surgery either if I was a loss cause. As for doing Chemo for the rest of my life, now thats a different story for me, but its not a decision I have to make right now, so I will leave it alone, dont need the extra stress. Attitude is everything, so I am doing my best to get a better one and get back on track.
I see my ONC tomorrow and have lots of questions for him and hopefully I will get some good answers. So I will check in tomorrow.
Thanks for all of your support from you and everyone here on the board. You all are GREAT!
God Bless
Beth0 -
2 suggestions
Hi Beth,
Are you familiar with Kris Carr's cancer journey? Her story is quite hopeful. She has incurable cancer and has prolonged her life. Check her out. She wrote Crazy Sexy Cancer Tips and has a website too.
The other suggestion is Spontaneous Healing by Dr. Andrew Weil. Also a great read and inspiring.
The letter has its work to do to help you financially but don't allow it to rob you of your peace of mind so you can focus on your healing. I agree with Cheryl.
I didn't do any chemo with Stage III and I am here 7+ years later. Someday you'll be saying.....I was dx'ed 7 years ago blah blah blah!
peace, emily
jeremiah 30:170 -
No Way
Dear Beth,
I have thinking and thinking of what to say to you. What I've come up with is simple. Don't buy into it. You are a survivor and you prove your onc wrong! Yes, it's always good to take care of business, because we don't know if we'll be run over by a bus. However, you don't have to take anyone's message as reality. You CAN build your own reality, and you need to build your survivor reality. I know the message was a blow. I cried, too. But then I thought that just 20 years ago, most of us would have been goners, but here we are. Find resources, find ways.
Hugs and prayers,
Kirsten0
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