For New Member - "TomsGirls"
Please welcome, TomsGirls...here is her story:
Thanks Craig for the response. I fill so overwhelmed and alone. I never imagined life could be so hard, but very difficult it is.We find out on the 19th how things are going for Tom, ct, mri, xrays, His doctors have repeated to us, to live this next year to the fullest, and how can we do that, Tom is receiving Social Security but all that goes to pay for cobra insurance, for I am self employed, but trying to find another job. To sum up our lives, I was diagnosed on March 20, 2007 with Stage 2b Hodgkins Lymphoma-6months of treatment, then Nov. 2007 diagnosed with Stage 2 Thyroid Cancer, then December 17, 2008, 4 inch mass detected by PET scan on the top of my heart so at the age of 38, I had open heart surgery and removed the 4 inch mass along with another 1 inch mass, however, these 2 masses turned out to be side effects of chemo.We thought that those 2 years were the worst, but my husband was my biggest supporter. Our 3 grils are 14, 11, and 7 and Nov. 2010 Tom was diagnosed with stage 3 rectal cancer, and the doctors was so positive all would be fine. Here we are and now he has underwent chemoradiation, left wedge liver surgery, 11 hour total right liver removal with vats to left lung and and lots of wedges and 1/3 of right lobe removal on Oct 28, 2011 only to be told ONE WEEK LATER, there were more lung nodules. His last ct exam in Feb. showed 2 quarter size lesions in liver 2 new small ones, multiple new lesions in both lungs along with growth to existing ones. I am so angry, I dont understand why. Our family has already been thru the cancer life with me, and now Tom, we have been honest with our girls, but all they know is cancer.I dont know how we will make it.I cry so often, and to think of our future, I dont know how we will be able to survive. Our girls have lost so much of their childhood to cancer and to loose their daddy too, along with how am I going to provide for them, without having to work multiple jobs. I know the cancer Tom has is so aggressive, he is kras mutant, was suppose to have temporary ileostomy with reversal, now when his rectum leaks out dark mucas the doctors just change the subject, tell him chemo is knocking stuff loose, but he has the urge to go to the bathroom which depresses him with this nasty leakage along with blood sometimes. I know I have said alot, but there is so much, and I juist dont have anyone to talk to. Ik dont want to be a widow, I dont want to loose my best friend, husband or daddy, but each day I see how weak he has gotten. I dont want him to suffer, but I dont want to loose him.I keep praying for a miracle but after Toms seizure in January I think that was the moment I lost myself and any strength that I was once had. I am tired of the doctors asking me why do you continue to cry, you know that we were only trying to prolong his life. I wish we could go back and have a do over, and went to MSK instead of the 2 hospitals we went to, one being the biggest cancer hospital, wish we offered an HAI pump, but instead jhust chemo and surgury. Dreading what the hospital tells us next week, praying my prayers will be answered, and the team of doctors will just be amazed at Toms health. Peace to you. thanks for listening. TG
Comments
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TG
TG - Your story is heartbreaking and brought tears to my eyes...I can feel the pain and sorrow in your words...your family has indeed been through alot and enough should be enough.
I know we often times look back and wonder "what if."
Sometimes, it is good to do that as it provides us with the moral compass to try and not repeat the same things we did before. But, it can hurt you too - brings you too much guilt about what you did or didn't do at the time.
The bottom line is you did the best that you all could do - at the time that you had to do it. Nobody here can ask anymore from you - or ourselves. I've made a couple of major blunders in my journey that put me in a bad position - and could have been fatal if it had gone unchecked.
I use those experiences to remind myself to not go that route again...but mistakes are made not only by us but by our medical teams - nobody really means to do it, it is an imperfect science.
You've been through the wringer...it's only understandable that you would both be upset with feelings of depression...if I were your husband, I would be feeling the same thing, no doubt. It's the hope that keeps us going - and when we lose sight of that - we lose sight of ourselves - and that can be a scary place to be - a place where you all find yourselves at right now.
All of your feelings are just calling out to me right now - I'm having to dry my eyes as I write you - I don't think there is anything that I can say that will heal your wounds...BUT, you always have me to talk to when you need to...plenty of other fine folks here too that will lend you a shoulder and an ear.
Nobody wants to lose what they've got - what they've worked so hard for - what they spent a lifetime building their lives around. So, your thoughts on losing your husband and what you and your family face are all real and valid concerns.
I'll certainly be interested in what the doctors tell you next week..."Prepare for the worst - but hope for the best." That sounds corny and frivilous but sometimes when that is all we have - that is all there really is.
We can't go back - we can only move forward - armed with what we've learned and a plan of action of some type, either proactive or palliative.
Lastly, I know you're angry - you're angry at what you cannot control - and what life has thrown at you - and how you will deal and cope with the issues you find at your doorstep. No easy answers for sure...your daughters, while they may have lost some childhood innocence will undoubtedly end up as strong women from what they have learned from both of you.
That kind of lesson is priceless, though it comes at with a high price to pay. But, they will have undergone a transformation that many of their peers might not have - and that puts them to the head of the classroom for 'real-life' applications.
With a heart full of sorrow, I wish I could give you more guidance and direction. I'll just stop here for now until we know more. I don't want to put the cart before the horse...you may need to talk again at a later time.
Thanks for sharing your thoughts and feelings - they are very touching and poignant - we try and see cancer in all of its abstract forms - but when you drill down past that and get to the people - then that's where it gets much realer - and where it hurts the most.
Sending you best wishes for your consult next week...
-Craig0 -
TGSundanceh said:TG
TG - Your story is heartbreaking and brought tears to my eyes...I can feel the pain and sorrow in your words...your family has indeed been through alot and enough should be enough.
I know we often times look back and wonder "what if."
Sometimes, it is good to do that as it provides us with the moral compass to try and not repeat the same things we did before. But, it can hurt you too - brings you too much guilt about what you did or didn't do at the time.
The bottom line is you did the best that you all could do - at the time that you had to do it. Nobody here can ask anymore from you - or ourselves. I've made a couple of major blunders in my journey that put me in a bad position - and could have been fatal if it had gone unchecked.
I use those experiences to remind myself to not go that route again...but mistakes are made not only by us but by our medical teams - nobody really means to do it, it is an imperfect science.
You've been through the wringer...it's only understandable that you would both be upset with feelings of depression...if I were your husband, I would be feeling the same thing, no doubt. It's the hope that keeps us going - and when we lose sight of that - we lose sight of ourselves - and that can be a scary place to be - a place where you all find yourselves at right now.
All of your feelings are just calling out to me right now - I'm having to dry my eyes as I write you - I don't think there is anything that I can say that will heal your wounds...BUT, you always have me to talk to when you need to...plenty of other fine folks here too that will lend you a shoulder and an ear.
Nobody wants to lose what they've got - what they've worked so hard for - what they spent a lifetime building their lives around. So, your thoughts on losing your husband and what you and your family face are all real and valid concerns.
I'll certainly be interested in what the doctors tell you next week..."Prepare for the worst - but hope for the best." That sounds corny and frivilous but sometimes when that is all we have - that is all there really is.
We can't go back - we can only move forward - armed with what we've learned and a plan of action of some type, either proactive or palliative.
Lastly, I know you're angry - you're angry at what you cannot control - and what life has thrown at you - and how you will deal and cope with the issues you find at your doorstep. No easy answers for sure...your daughters, while they may have lost some childhood innocence will undoubtedly end up as strong women from what they have learned from both of you.
That kind of lesson is priceless, though it comes at with a high price to pay. But, they will have undergone a transformation that many of their peers might not have - and that puts them to the head of the classroom for 'real-life' applications.
With a heart full of sorrow, I wish I could give you more guidance and direction. I'll just stop here for now until we know more. I don't want to put the cart before the horse...you may need to talk again at a later time.
Thanks for sharing your thoughts and feelings - they are very touching and poignant - we try and see cancer in all of its abstract forms - but when you drill down past that and get to the people - then that's where it gets much realer - and where it hurts the most.
Sending you best wishes for your consult next week...
-Craig
I read your story and was also deeply moved. We are just at the beginning of our "journey" (my husband was diagnosed 11/2011), so I unfortunately have no advice for you but share many of your fears. All I can do is send my thoughts and best wishes all the way from germany...
hugs
Petra0 -
TG your story has justSundanceh said:TG
TG - Your story is heartbreaking and brought tears to my eyes...I can feel the pain and sorrow in your words...your family has indeed been through alot and enough should be enough.
I know we often times look back and wonder "what if."
Sometimes, it is good to do that as it provides us with the moral compass to try and not repeat the same things we did before. But, it can hurt you too - brings you too much guilt about what you did or didn't do at the time.
The bottom line is you did the best that you all could do - at the time that you had to do it. Nobody here can ask anymore from you - or ourselves. I've made a couple of major blunders in my journey that put me in a bad position - and could have been fatal if it had gone unchecked.
I use those experiences to remind myself to not go that route again...but mistakes are made not only by us but by our medical teams - nobody really means to do it, it is an imperfect science.
You've been through the wringer...it's only understandable that you would both be upset with feelings of depression...if I were your husband, I would be feeling the same thing, no doubt. It's the hope that keeps us going - and when we lose sight of that - we lose sight of ourselves - and that can be a scary place to be - a place where you all find yourselves at right now.
All of your feelings are just calling out to me right now - I'm having to dry my eyes as I write you - I don't think there is anything that I can say that will heal your wounds...BUT, you always have me to talk to when you need to...plenty of other fine folks here too that will lend you a shoulder and an ear.
Nobody wants to lose what they've got - what they've worked so hard for - what they spent a lifetime building their lives around. So, your thoughts on losing your husband and what you and your family face are all real and valid concerns.
I'll certainly be interested in what the doctors tell you next week..."Prepare for the worst - but hope for the best." That sounds corny and frivilous but sometimes when that is all we have - that is all there really is.
We can't go back - we can only move forward - armed with what we've learned and a plan of action of some type, either proactive or palliative.
Lastly, I know you're angry - you're angry at what you cannot control - and what life has thrown at you - and how you will deal and cope with the issues you find at your doorstep. No easy answers for sure...your daughters, while they may have lost some childhood innocence will undoubtedly end up as strong women from what they have learned from both of you.
That kind of lesson is priceless, though it comes at with a high price to pay. But, they will have undergone a transformation that many of their peers might not have - and that puts them to the head of the classroom for 'real-life' applications.
With a heart full of sorrow, I wish I could give you more guidance and direction. I'll just stop here for now until we know more. I don't want to put the cart before the horse...you may need to talk again at a later time.
Thanks for sharing your thoughts and feelings - they are very touching and poignant - we try and see cancer in all of its abstract forms - but when you drill down past that and get to the people - then that's where it gets much realer - and where it hurts the most.
Sending you best wishes for your consult next week...
-Craig
TG your story has just overwhelmed me with emotions. I have been battling this for over 6 years and my wife is the one I fear for the most. I can't imagine having children to worry about as well. I wish there was more that I could say but you and your husband are in my prayers and please keep us posted.0 -
TG I'm so touched by knowing your story........janderson1964 said:TG your story has just
TG your story has just overwhelmed me with emotions. I have been battling this for over 6 years and my wife is the one I fear for the most. I can't imagine having children to worry about as well. I wish there was more that I could say but you and your husband are in my prayers and please keep us posted.
That is frustrating to me that all I can offer you is my deepest friendship ,share your fears and pray for you and all your people!
God bless you TG from Barcelona.0 -
Thank You for the support.Sundanceh said:TG
TG - Your story is heartbreaking and brought tears to my eyes...I can feel the pain and sorrow in your words...your family has indeed been through alot and enough should be enough.
I know we often times look back and wonder "what if."
Sometimes, it is good to do that as it provides us with the moral compass to try and not repeat the same things we did before. But, it can hurt you too - brings you too much guilt about what you did or didn't do at the time.
The bottom line is you did the best that you all could do - at the time that you had to do it. Nobody here can ask anymore from you - or ourselves. I've made a couple of major blunders in my journey that put me in a bad position - and could have been fatal if it had gone unchecked.
I use those experiences to remind myself to not go that route again...but mistakes are made not only by us but by our medical teams - nobody really means to do it, it is an imperfect science.
You've been through the wringer...it's only understandable that you would both be upset with feelings of depression...if I were your husband, I would be feeling the same thing, no doubt. It's the hope that keeps us going - and when we lose sight of that - we lose sight of ourselves - and that can be a scary place to be - a place where you all find yourselves at right now.
All of your feelings are just calling out to me right now - I'm having to dry my eyes as I write you - I don't think there is anything that I can say that will heal your wounds...BUT, you always have me to talk to when you need to...plenty of other fine folks here too that will lend you a shoulder and an ear.
Nobody wants to lose what they've got - what they've worked so hard for - what they spent a lifetime building their lives around. So, your thoughts on losing your husband and what you and your family face are all real and valid concerns.
I'll certainly be interested in what the doctors tell you next week..."Prepare for the worst - but hope for the best." That sounds corny and frivilous but sometimes when that is all we have - that is all there really is.
We can't go back - we can only move forward - armed with what we've learned and a plan of action of some type, either proactive or palliative.
Lastly, I know you're angry - you're angry at what you cannot control - and what life has thrown at you - and how you will deal and cope with the issues you find at your doorstep. No easy answers for sure...your daughters, while they may have lost some childhood innocence will undoubtedly end up as strong women from what they have learned from both of you.
That kind of lesson is priceless, though it comes at with a high price to pay. But, they will have undergone a transformation that many of their peers might not have - and that puts them to the head of the classroom for 'real-life' applications.
With a heart full of sorrow, I wish I could give you more guidance and direction. I'll just stop here for now until we know more. I don't want to put the cart before the horse...you may need to talk again at a later time.
Thanks for sharing your thoughts and feelings - they are very touching and poignant - we try and see cancer in all of its abstract forms - but when you drill down past that and get to the people - then that's where it gets much realer - and where it hurts the most.
Sending you best wishes for your consult next week...
-Craig
Thank You for the support. It really mens a lot to find a place to talk where everyone knows the pain, fears, and anger I seem to be having non stop. I try to take one day at a time, but that is easier said then done, for I can't help but to think what will our lives be like this time next year and will Tom be with us. He is being so strong for all of us and for himself too right now. He is on Folfori currently and has had 5 infusions, has his up and downs so far. Doctors have yet to add avastin to this regimen but he is receiving neulasta shots after 48 hour pump removed. Neulasta seems to give him lots of leg pains/cramping,however,thats the one pain Tom has had since being diagnosed has been leg pain. Anyway, thanks again for welcoming me and I will post when I can but am trying to get acquainted with all the members here. Warmest wishes to all, TG0 -
Wow, that sure is a lot totomsgirls said:Thank You for the support.
Thank You for the support. It really mens a lot to find a place to talk where everyone knows the pain, fears, and anger I seem to be having non stop. I try to take one day at a time, but that is easier said then done, for I can't help but to think what will our lives be like this time next year and will Tom be with us. He is being so strong for all of us and for himself too right now. He is on Folfori currently and has had 5 infusions, has his up and downs so far. Doctors have yet to add avastin to this regimen but he is receiving neulasta shots after 48 hour pump removed. Neulasta seems to give him lots of leg pains/cramping,however,thats the one pain Tom has had since being diagnosed has been leg pain. Anyway, thanks again for welcoming me and I will post when I can but am trying to get acquainted with all the members here. Warmest wishes to all, TG
Wow, that sure is a lot to deal with. Craig sums it all up pretty well for you, he's been at this battle a long time, and has a lot of "words of wisdom". This disease makes me so angry and sad!!! Keep us posted on how it's going and feel free to vent.0 -
TG, I understand...tomsgirls said:Thank You for the support.
Thank You for the support. It really mens a lot to find a place to talk where everyone knows the pain, fears, and anger I seem to be having non stop. I try to take one day at a time, but that is easier said then done, for I can't help but to think what will our lives be like this time next year and will Tom be with us. He is being so strong for all of us and for himself too right now. He is on Folfori currently and has had 5 infusions, has his up and downs so far. Doctors have yet to add avastin to this regimen but he is receiving neulasta shots after 48 hour pump removed. Neulasta seems to give him lots of leg pains/cramping,however,thats the one pain Tom has had since being diagnosed has been leg pain. Anyway, thanks again for welcoming me and I will post when I can but am trying to get acquainted with all the members here. Warmest wishes to all, TG
I lost my husband in 2000 to cancer - mesothelioma. And I understand the desperation and feelings that you are having - the "what if's" and "if only's." I am not saying you are going to lose your husband because there is always hope. But what I do want to say to you, for your sake as his wife, is to please stop questioning decisions you made in his treatment early on - every decision you and your husband made was thought out and made based on information and resources available to you at that time. Every decision you made was the right one. And all of you have tried valiantly to beat this thing down, you are still trying. I hope you can go forward with no regrets in this journey.
I know it is hard, but if you can just try to live in the moment and not think of next year or even next week, it might help. You can even allow yourself a little denial - it's an effective coping skill. Don't let this cancer have your every waking moment. You are doing all you can now to fight it, so let yourself off the hook. You might even try to spend some time with some friends or family away from your husband and have a huge pity party and just cry and wail. Sometimes we need this release. And then you can get back to your life and family and husband and just try to enjoy your time together.
I understand the tears, the anger and frustration, the anticipatory grief. It's just not fair. I have some issues myself - I am a 55-year-old experienced RN and my only child, my precious 33 year old daughter with a new baby, her first child, has stage IV colon cancer. How could I not have known? What could we have done differently? How did I take care of other people while this was going on in my daughter's body? We just can't go back, we can only go forward, and try to give them some normalcy back as much as we can.
I do feel your pain and have lived it. There's no easy answer. Just know that you have the support of everybody here and this is a great group of caring people. My heart goes out to you.
Sandy0 -
Dear TG
I don't know what state you live in but you might want to check and see if it has a catastrophic insurance pool. Some do.
Also it sounds as if you and your family could use some counseling to help you through. Your local American Cancer Society, your family doctor or your local hospital should be able to put you in touch with someone or a group which can offer you local emotional support for cancer patients and their families.
Unfortunately for us all, there is no way to undo what has already happened. Our only option is to move forward as best as we can.
Most doctors hate to have to deal with the tears and emotions exhibited by patients and/or their families, as they can't afford to get emotionally involved. Cry when you need to, come here and rant and rave when you feel the need. We understand.
It is easy for me to say...make the most of each day...but you and your family are living very long hard days right now. But I do ask that you and your family take some time each day to be together enjoying some activity, building special moments. You and your husband also need time alone, not covering medical issues or fears, but sharing moments of love and caring. If the worst happens you and the girls will have these times to remember, but more importantly if the best happens you will have begun a family tradition for drawing close and sharing time each day.
Please stay close here and let us help as we can.
Prayers for you and your family,
Marie who loves kitties0 -
TG, Welcome to the board...
TG, Welcome to the board... Your post was very emotional for me since my Rick and I have been in this battle for close to to 2 1/2 yrs. and I can feel all too well what you're experiencing. I'm find myself typing this through tears, so I'll keep this short, but I wanted to say hello and let you know that we're here for you when you need support.
All my best,
Cynthia0
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