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Nick - One Year, One Month after Diagnosis - Gone....

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Nick has had recent dizziness, and facial weakness. A CT brain scan on 05/11 showed a tumor on the cerebellum. The MRI on the 18th showed 2 others and a host of "tumor dust" and Leptopmengial disease (cancer in the spinal fluid). In order to control the dizziness, lessen the seizures and give Nick a quality of life for the summer, the doctor has prescribed 15 WBRs. Please don't tell me how scary - I already know. He would have nothing without them though, so forward we move.....

My "poster boy" is now Stage IV and I believe has a very short time with us. This is SO Hard to believe as now under seizure meds, he is back to "normal" Nick.

ARGH!!! I'm stunned, incrediably saddened, and at a loss. I'm searching for the impossible and I know it. But it doesn't make it any more possible to stop searching for "hope". Dammit, dammit, dammit!

Love & Hugs to everyone. Sorry to bring this news.

Terry
wife to Nick, age 49
dx T3N1M0, 05/19/11
2 weeks inpatient Cisplatin/5FU, 26 Rads
THE 09/08/11
NED until 05/11/2012

Court_Ren
Posts: 28
Joined: Feb 2012

Oh I am so sorry to hear this. I wish it wouldn't have come to that. Damit is right. You have every reason to feel that way. I say the same thing every day. My husband's cancer seems to be to smart or it's own good. He is now on his third line of chemo, cause we can't seem to find one to slow it down. People always ask me what kind of cancer he has and I say " Fast, smart, and lethal. damit anyways. Stay strong hun. I will pray for him right now. God bless, and I hope that you have had a nice weekend with your family. :)

BobHaze's picture
BobHaze
Posts: 155
Joined: Sep 2011

Oh Terry – I’m so sorry for you and Nick to hear this terrible news. You and Niki and I got active on this board around the same time and of course Nick and I had our surgeries within a couple of weeks of one another, so I’ve always felt a particular closeness to you guys as we’ve moved along on our journeys. I’m so sad that this has happened at all, but especially so soon after all that you’ve both had to go through – why couldn’t you and he have had more time to enjoy life even if this did have to happen eventually?

All I can think to say is that I’ll be thinking of you guys a lot, and I hope the medical folks are able to keep Nick “with it” and pain free for as long as possible. I’ll hope upon hope that a miracle happens and he’s able to somehow pull through this latest awful setback.

Damn this beast!!!

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Terry, I can't express how sorry I am to hear your news this morning. I'm sick that Nick has had this terrible re-occurrence. I know that you must be reeling. Please know that we are praying for Nick and for you. You will be in our thoughts and prayers every day. This can happen to anyone of us at any time. We all know it and live with the thought in the back of our minds. It is still hard to accept that someone like Nick who's fought so well can have this happen.

Dave

BMGky
Posts: 666
Joined: May 2010

How sad!! How angry it makes one. You did everything you were supposed to. This is such a terrible disease. I agree with your "Dammit!"s I understand your searching for "Hope." Of course, I want to ask all the wrong questions: How did this happen? What went wrong? Why?

Prayers for you and a snuggy, huggy hug. Wish I could do more BMGky

paul61's picture
paul61
Posts: 1090
Joined: Apr 2010

Terry,

I am so very saddened to hear of Nick's recurrence. It seems he was doing so well after surgery. This it almost impossible to believe. You and Nick will be in my prayers daily. I know you must be still reeling from this terrible news. I am glad the seizure medication is helping his quality of life.

With great sadness,

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

Guigna
Posts: 71
Joined: Feb 2012

It is so terribly frightening to watch our beloveds get wrecked by this terrible cancer.
Enjoy your good moments.

bingbing2009
Posts: 179
Joined: Feb 2011

Terry,

I really hated to see this news. What a shock! I know you are devastated and wish there were something I could do to help or change things, but I know that's impossible.

I will keep you and your family in my thoughts and prayers. Just keep holding, loving, and enjoying each other as much as possible.

Sending you lots of hugs,
Melinda

DX October 2009: T3N1M0
November and December 2009: chemo (Cisplatin and 5 FU) and radiation
February 2010: Ivor Lewis surgery

GerryS's picture
GerryS
Posts: 237
Joined: Aug 2010

Not the news we wanted to read. My thoughts and prayers are with you my friend and neighbor.

Gerry

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

That IS just rotten. You guys are so great. But bad stuff keeps happening. Our love and prayers go with you. I know what it's like when chemo fails and cancer starts reoccurring. Obviously, we are all on your side. Take care.

--Jerry

hopefulsurvivor49's picture
hopefulsurvivor49
Posts: 32
Joined: Apr 2012

Terry,
I'm pretty new to these postings. I'm so very sad to hear your news about Nick. Maybe many of you feel the same way I do -- every time I hear another diagnosis it's like hearing the news of my own cancer all over again.

Sending you and your family strength.

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

I hate to hear this shocking news! I can't tell you how it pains me to read what you have gone through to fight the beast and it rears its hideous head again! Just know that we are all praying for Nick and your whole family during this very difficult time.

Love, Steph

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

Terry,
I have no words except to say I love you & Nick!
Please know that you both are loved!
Erica

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Terry:

I will send you a private message.

Sending you so much love and hugs and prayers,
Judy

NikiMo's picture
NikiMo
Posts: 343
Joined: Jul 2011

Terry,

I have read your post several times now trying to find the words to respond. I am still unsure of what to say except that I am so sorry that you and Nick have been dealt this news. My heart sank when I saw the subject line. We have been on this journey together since almost day one. I am so sorry my friend that this is happening. Please know that I am always here as a shoulder to lean on, you have far away friends that are always thinking of you both and praying for you.

Niki

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Oh, Terry, I am SO sorry to hear this news! You and Nick and the kids are certainly in my prayers. You two have done everything right and been such a help to the rest of us. This cancer is truly a demon. Dammit, dammit! I am wondering one thing: What about Cyber Knife instead of WBR? I keep reading about that being the recommended method now, but not all facilities have it yet. (??)
Hugs,
Angie

ABC321's picture
ABC321
Posts: 52
Joined: Oct 2011

Hi Terry,
...im so sad to hear this news. You guys are the best. Always so supportive and positive. I wish i could do something for you both. Im sending my love and hugs across the ocean....
xx
steve & family.

monica_sss
Posts: 57
Joined: Dec 2011

I'm so sorry to read of Nick's reoccurence. I hope that Nick and your family have a quality summer -- with many lasting memories.

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

I am so very sorry to hear such awful news..... My thoughts and prayers are with you as you face this new hurdle. There are just no words to say how badly I feel for you. Enjoy every moment that you are granted with Nick, and treasure every memory.
Chantal

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

This is so disheartening. Your heart surely must be breaking. Not to fret WBR. It sounds terrible, but my SIL underwent 10 round WBR and is just fine. 9 tumors. All but 1 are gone and the 1 left keeps shrinking. Fear not! Love a lot! Fight on, dear one, fight on.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

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 Ann

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

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

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

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 10/24/11

annalan
Posts: 149
Joined: Jul 2011

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

sangora
Posts: 218
Joined: Mar 2011

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 journey

Lynn_Paul
Posts: 22
Joined: Sep 2011

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.
Lynn

Freida
Posts: 191
Joined: Nov 2011

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 xx

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

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

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

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,
Judy

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

It's a dark place you are, but just remember the love. Hold on to love. We are here for you.

Freida
Posts: 191
Joined: Nov 2011

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 x

paul61's picture
paul61
Posts: 1090
Joined: Apr 2010

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!

Altra's picture
Altra
Posts: 27
Joined: Apr 2011

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!

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

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

Altra's picture
Altra
Posts: 27
Joined: Apr 2011

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. :-(

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

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

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

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---
Angie

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Oh Terry,

You and Nick are in my thoughts daily.

Lots of love and cyber hugs sent your way!

Lee Ann

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

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! Erica

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

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 best

llamp0922
Posts: 40
Joined: Jul 2010

Terry,
I am so sad to hear your news. I pray for strength for you-being a caregiver can be even harder than being sick. Take care of yourself while taking care of everyone else.

Jimbo-I am glad to see that you are doing well. I hope that the FOLFOX continues to work. Hope is what you have, along with faith and love. Without hope, there is nothing else.

Take care,
Lisa

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

I lost Nick at 7:46 AM on June 19th - one year and one month to day after the initial endoscopy that brought us to you. We are saddened that it happened in the hospital, but he was comfortable (most important) and surrounded by family.

Thank you everyone for your care, your concern and your love!

Terry
PROUD wife to Nick, age 49 1 month and 6 days

minikit
Posts: 24
Joined: Nov 2011

Oh Terry - I am so sad to read your post.Sending you and yours lots of hugs.
kit

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Praying that you find comfort during this difficult time. So sorry for your loss.

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

There are no words to say how very sorry I am to hear your news. This is such a difficult time for you and your lovely family, I wish you strength to get through the next minutes, hours,days and weeks. My heart breaks for you Terry, and my brain just can't comprehend that this beast has taken another fantastic man, way too soon. Let your family and friends support and hold you up during the hard days to come. Let your body rest and please always remember that my thoughts and prayers are with you.

so sorry,
big hugs
Chantal
wife of Lee
deceased Nov 8, 2011

paul61's picture
paul61
Posts: 1090
Joined: Apr 2010

Terry,

I am so sorry to hear that Nick has left us. I am glad that Nick was surrounded by the love of his family at the end. May you find support and peace with your friends and family during this difficult time. My deepest condolences.

Sadly,

Paul Adams
Grand Blanc, Michigan

BobHaze's picture
BobHaze
Posts: 155
Joined: Sep 2011

Oh Terry – like everyone else I’m so sorry this has happened to Nick and your family. To say it’s not fair doesn’t even begin to touch the depth of what has happened. I know you know the love and support of all of us who have come to know this beast are with you as you continue your journey without Nick. I hope you are able to find some solace from that. I also know you will, but please reach out to us if you need to shout or cry or whatever – we are always here for you. I can only echo your, “Dammit, Dammit Dammit!

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

I am shocked how quickly this cancer took Nick from you and so very, very sorry for your loss. I want to express my deepest sympathy for your family.
Big hugs, and lots of love,
Stephanie

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

Hi Terry,
I'm so saddened to read your post. I rarely check this discussion board anymore but I just wanted to check in on you and some of the others who were so helpful to me when my husband was battling this beast.
I know the days ahead will be a whirlwind of emotions and activity. Know that you are thought of so fondly by so many on this board.
There are some of the gals from this EC board who now have a group on Facebook. We are very caring and supportive of each other. We all "get it". I know you will remember many of them. Some of them have young children, some are childless and some are empty nesters like me but we've all lost our mates in the past year to EC. At some point if you're interested in joining us just let me know. I know Chantal would also help you.
In the meantime, my prayers are with you and your kids.

Hugs
Rita

Wife of Greg
DX July, 2011
Entered eternal life Oct 2011

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