Nick - One Year, One Month after Diagnosis - Gone....
Comments
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I've been away for a few weeks from the board
Your message was the first I read. So very sad to read your update on Nick. Please know you, Nick and the children are in my heart and prayers.
Lee Ann0 -
Thank you everyone for the support
I'm finding "round 2" so much harder to deal with - both emotionally and physically. This cancer really takes a toll on both the patient and the caregiver.
Your never ending support for us both lifts my heart. Nick is taking radiation well and I hope against hope that we have a shot at remission. I'm not counting on it, but I have asked in prayer for something that we can fight, something that we can beat.
I've wondered about CyberKnife as well, but believe the Leptomeningeal puts that out of consideration. Another friend suggested Proton Radiation, but I haven't seen that mentioned as an option in my research on this latest development. I believe our hopes (and fears) must rest with God for this one. Local docs have as much to offer as major centers this time around.
Again, we appreciate your prayers! It's the one thing that keeps me going each new day.
Terry0 -
Can't really add anything
Can't really add anything that hasn't already been said but want you to know how very, very sad I am to read about Nick. My heart goes out to you as I pray for a miracle.
Ann wife of Alan
Dx Sept 2009, T3N2M0
Ivor Lewis March 2010
Lost his battle Jan. 20120 -
So sorryTerryV said:Thank you everyone for the support
I'm finding "round 2" so much harder to deal with - both emotionally and physically. This cancer really takes a toll on both the patient and the caregiver.
Your never ending support for us both lifts my heart. Nick is taking radiation well and I hope against hope that we have a shot at remission. I'm not counting on it, but I have asked in prayer for something that we can fight, something that we can beat.
I've wondered about CyberKnife as well, but believe the Leptomeningeal puts that out of consideration. Another friend suggested Proton Radiation, but I haven't seen that mentioned as an option in my research on this latest development. I believe our hopes (and fears) must rest with God for this one. Local docs have as much to offer as major centers this time around.
Again, we appreciate your prayers! It's the one thing that keeps me going each new day.
Terry
Hi Terry,
I don't check this board as often anymore but just wanted to tell you how sorry I am to read your post. You and Nick have been such troopers throughout this whole ordeal. Always so positive and upbeat even though you had your struggles to deal with. Remember this; where there is life, there is hope. Never give up hope. Prayers and hugs to you.
Rita
Wife of Greg
Diagnosed Stage 4 7/09/11
Entered Eternal Life 10/24/110 -
So Sorry Terryannalan said:Can't really add anything
Can't really add anything that hasn't already been said but want you to know how very, very sad I am to read about Nick. My heart goes out to you as I pray for a miracle.
Ann wife of Alan
Dx Sept 2009, T3N2M0
Ivor Lewis March 2010
Lost his battle Jan. 2012
Over the last 2 years you have been such a steady support for me. I am so sorry that after surgery and all that recovery requires this has happened. As a stage IV who is nearing the end of the journey I want to encourage you and your family to take every day as a gift and be thankful for the moments you have together. I will pray for you and your family and especially for Nick. Sam stage IV still on my journey0 -
One day at a time
Terry
I'm so sorry to hear it's back. My husband was 8 months post op when his came back too. First it was just one tiny spot. Surgery didn't work so he had chemo and radiation. Just before the pet scan to determine if he could have surgery again, he started having back pain. They moved the pet scan up. It showed a mass in the pelvis. Again more radiation was tried. Two months later, which was 2 months ago, the pet showed the cancer was all over. He passed away 9 days ago. He said he was going to do as much as he could for as long as he could. He did. We took several trips with our three children, and family and friends. We made the most of each day. We talked about everything. We started dating as teenagers and were happily - very happily married for 30 years. He never complained through the 21 months since the first diagnosis. In recent months, he had many pretty good days and some not so good. Everything changed in one day. He woke up with really bad pain. We went to the hospice center to get the pain under control and 19 hours later he lost the battle. My suggestion is to call hospice NOW. We had only contacted them the week before. If we hadn't, we would not have been able to go to the center when we needed it so unexpectedly. I know you have children also, which makes deciding where to be at the end more difficult. It's a very personal choice, but I am somewhat relieved it didn't happen in our home. I am also grateful he got his wish and the "end" happened very fast. The hospice nurses said he did in minutes and hours what can take days and weeks. They also said the way a person lives his life affects the way they approach death. Paul did everything fast. Now we know why. I will sadly tell you this is something you cannot prepare yourself for. Don't waist your time now. You can't get it back.
Lynn0 -
Terry
I am sorry I have not
Terry
I am sorry I have not posted earlier, but we were away in Galveston for my daughter's wedding and did not have internet at the beach house.
I am so very sorry to hear your news about Nick. I wish I could think of something profound to say as you have been one of the most comforting and supportive people I have encountered since we began this horrid journey. But all I can say is I am so, so sorry. Dammit indeed, this cancer just sucks.
Huge hugs my friend. Praying for a miracle.
Love and hugs
Freida xx0 -
Nick is holding his own
WBR isn't giving us the remission I've prayed for, but it is helping Nick "hold his own". Days are difficult, but I'm grateful for each day regardless.
Your support and virtual hugs are appreciated. I'll try to reach out to more of you when I can, but right now it's just tough. Difficult to think, difficult to talk, difficult to type....
Love & Hugs to all!
Terry
Loving wife of Nick, age 490 -
It is okay TerryTerryV said:Nick is holding his own
WBR isn't giving us the remission I've prayed for, but it is helping Nick "hold his own". Days are difficult, but I'm grateful for each day regardless.
Your support and virtual hugs are appreciated. I'll try to reach out to more of you when I can, but right now it's just tough. Difficult to think, difficult to talk, difficult to type....
Love & Hugs to all!
Terry
Loving wife of Nick, age 49
Terry:
I cannot even imagine what this must be like for you and the kids and Nick. Just know that you are in our prayers and thoughts daily.
Sending you tons of hugs and lots of love and prayers for strength.
Love,
Judy0 -
It's a dark place you are,TerryV said:Nick is holding his own
WBR isn't giving us the remission I've prayed for, but it is helping Nick "hold his own". Days are difficult, but I'm grateful for each day regardless.
Your support and virtual hugs are appreciated. I'll try to reach out to more of you when I can, but right now it's just tough. Difficult to think, difficult to talk, difficult to type....
Love & Hugs to all!
Terry
Loving wife of Nick, age 49
It's a dark place you are, but just remember the love. Hold on to love. We are here for you.0 -
TerryTerryV said:Nick is holding his own
WBR isn't giving us the remission I've prayed for, but it is helping Nick "hold his own". Days are difficult, but I'm grateful for each day regardless.
Your support and virtual hugs are appreciated. I'll try to reach out to more of you when I can, but right now it's just tough. Difficult to think, difficult to talk, difficult to type....
Love & Hugs to all!
Terry
Loving wife of Nick, age 49
Thank you for letting
Terry
Thank you for letting us know how things are going, but don't ever feel that you have to come here when other more pressing things are on your mind. Just know that when you need us, we are here for you, just as you have been here for so many of us.
I understand the feeling of difficult to talk and think etc. I felt like that when Bill was going through treatment and we kind of retreated into a little bubble of our own. Unusual for me as I am usually a bit of a sharing too much information type of person, but I just didn't want to talk to people at that time (one close friend was a little hurt, but she understood in the end).
You must just be reeling with this sudden turn of events. I wish there was something I could do, but you are in my thoughts every day.
Love and Hugs
Freida x0 -
oh no!
Terry, I am so sorry to hear this latest development. My dad (also Nick, and also orginally diagnosed as Stage III) passed away in March after a discovered reoccurance the month before. It was heart-breaking to receive that news- after he had gone through chemo/radiation and that horrible surgery the autumn before. Please know that I am thinking of you guys and hoping for the best. Please keep us updated!0 -
Thanks for letting us know how things are goingTerryV said:Nick is holding his own
WBR isn't giving us the remission I've prayed for, but it is helping Nick "hold his own". Days are difficult, but I'm grateful for each day regardless.
Your support and virtual hugs are appreciated. I'll try to reach out to more of you when I can, but right now it's just tough. Difficult to think, difficult to talk, difficult to type....
Love & Hugs to all!
Terry
Loving wife of Nick, age 49
Terry,
We appreciate the update, but don't feel that you need to come here when you don't feel up to it. I know when you are dealing with bad news and struggling with the life changes that come with it, some days it is all you can do to get through the day. Know that you are in our daily prayers and thoughts.
Best Regards,
Paul Adams
Grand Blanc, Michigan
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
Oh Altra!Altra said:oh no!
Terry, I am so sorry to hear this latest development. My dad (also Nick, and also orginally diagnosed as Stage III) passed away in March after a discovered reoccurance the month before. It was heart-breaking to receive that news- after he had gone through chemo/radiation and that horrible surgery the autumn before. Please know that I am thinking of you guys and hoping for the best. Please keep us updated!
I recall your first post. I remember your Nick and mine and both of them being Stage III and facing surgery at similar times. Dammit! I am SO Sorry! This truly is an unfair beast of a cancer.
Thank you for checking in on us and keeping us in your thoughts.
Terry
@Everyone - thank you for checking on me. I'm still here, still teary, still angry, still frustrated, and still scared. But it helps to know that I've got you behind me lending me your strength.
Love & Hugs to Everyone,
Terry0 -
I was just telling my momTerryV said:Oh Altra!
I recall your first post. I remember your Nick and mine and both of them being Stage III and facing surgery at similar times. Dammit! I am SO Sorry! This truly is an unfair beast of a cancer.
Thank you for checking in on us and keeping us in your thoughts.
Terry
@Everyone - thank you for checking on me. I'm still here, still teary, still angry, still frustrated, and still scared. But it helps to know that I've got you behind me lending me your strength.
Love & Hugs to Everyone,
Terry
I was just telling my mom about your Nick today. It's truly not fair that both of them had to endure chemo and that horrible surgery, only for the cancer to come back.
I remember my dad had a brief time in between his surgery and discovering the cancer had come back when he felt good. I remember him remarking one day that he was finally beginning to believe he would be around for a while longer. He was happily making plans for the spring and summer even... and then a month later, he was in the hospital being told the cancer had spread.
It's just not fair at all. :-(0 -
We have the same story....Altra said:I was just telling my mom
I was just telling my mom about your Nick today. It's truly not fair that both of them had to endure chemo and that horrible surgery, only for the cancer to come back.
I remember my dad had a brief time in between his surgery and discovering the cancer had come back when he felt good. I remember him remarking one day that he was finally beginning to believe he would be around for a while longer. He was happily making plans for the spring and summer even... and then a month later, he was in the hospital being told the cancer had spread.
It's just not fair at all. :-(
Nick's surgery was Sept 8th, 2011. It was easily late November before he really felt good. And once he felt good, we started feeling comfortable enough to make plans for the coming summer, remodeling options for our home, and vacation plans for the next 5 years. We promised the littles that this summer wouldn't be like last year - that we would have FUN this year. We planned for a lifetime, only to have a few months of quality before the beast returned. But quality trumps quanity, right? How many times do I need to repeat that to myself before I truly believe.....
No, Altra, not fair at all is right!
Terry0 -
Terry, thanks for theTerryV said:We have the same story....
Nick's surgery was Sept 8th, 2011. It was easily late November before he really felt good. And once he felt good, we started feeling comfortable enough to make plans for the coming summer, remodeling options for our home, and vacation plans for the next 5 years. We promised the littles that this summer wouldn't be like last year - that we would have FUN this year. We planned for a lifetime, only to have a few months of quality before the beast returned. But quality trumps quanity, right? How many times do I need to repeat that to myself before I truly believe.....
No, Altra, not fair at all is right!
Terry
Terry, thanks for the updates. Please know that you are all in my thoughts and prayers each day. Sending hugs and wishing there was more I could do---
Angie0 -
So good to hear from youTerryV said:We have the same story....
Nick's surgery was Sept 8th, 2011. It was easily late November before he really felt good. And once he felt good, we started feeling comfortable enough to make plans for the coming summer, remodeling options for our home, and vacation plans for the next 5 years. We promised the littles that this summer wouldn't be like last year - that we would have FUN this year. We planned for a lifetime, only to have a few months of quality before the beast returned. But quality trumps quanity, right? How many times do I need to repeat that to myself before I truly believe.....
No, Altra, not fair at all is right!
Terry
Oh Terry,
You and Nick are in my thoughts daily.
Lots of love and cyber hugs sent your way!
Lee Ann0 -
Not Fair for SureTerryV said:We have the same story....
Nick's surgery was Sept 8th, 2011. It was easily late November before he really felt good. And once he felt good, we started feeling comfortable enough to make plans for the coming summer, remodeling options for our home, and vacation plans for the next 5 years. We promised the littles that this summer wouldn't be like last year - that we would have FUN this year. We planned for a lifetime, only to have a few months of quality before the beast returned. But quality trumps quanity, right? How many times do I need to repeat that to myself before I truly believe.....
No, Altra, not fair at all is right!
Terry
Terry,
I hope that you can have some Quality time this summer, that you are able to take a little time and have some fun, I know what last summer was like for all of us and it's not FAIR! IT's so hot here in Florida & I am trying to get John to go away someplace but you won't believe this the Dog is sick (cancer) and he doesn't want to leave her. Well I'm trying to make some fun happen here in the heat. I hope Nick is feeling up to something fun! Love to you Both! Erica0 -
I'm saddened to read this news
I'm so sad to read this Terry. I know the sting of this diagnosis. We found questionable activity after my first post-op scan and was IV by the second. Third scan had me at IVB. Then I received a clean scan so go figure. I'm still waiting for my next one. Scared to death. I always thought it would be easier if I had a break between surgery and IVB but I think no matter when it comes, it hurts as bad. The doctor is hoping that I am in remission but as we know, with EC, it rarely goes into remission and when it does, rarely lasts long.
Have you been given any treatment options. I know so many say don't treat a stage IVB and my Oncologist was gently treating mine. He sent me to Duke U for a second opinion and the Oncologist at Duke said that even thought I was an IVB, I did not resemble any other IVB he had seen and there was no reason not to aggressively treat this disease. He offered some suggestions of Chemo and we ended up going with FOLFOX. Again, this isn't the standard of care for an IVB but it's working for me.
After starting the FOLFOX, I talked to a co-worker from a different office. He told me about one of his wife's co-workers. 13 years ago she was an IVB with EC and it went into remission and has remained there. Again I know it's the exception rather than the rule but still, it gives you some hope.
Take care and tell Nick to feel free to contact me direct if he would like someone to talk to.
All my best0
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