Being discharged and pathology report

NikiMo

Hi friends,

Jeff is being discharged from the hospital today. The surgeon came by and said he is making good progress and if we felt comfortable going home he was ok with that decision. So we are waiting for the discharge papers!! Jeff's pain has gotten a little worse since they took him off of the numbing agent, but it isn't anything he can't tolerate. They are giving us pain meds to go home with. I am a little nervous to take over all of his care, but we have come this far together we can make it to the finish line.

Now for the very good news! We got the results from the pathology report. Our surgeon should not play poker ever, you can see his emotions all over his face. So when he came in after checking the report with a huge smile on his face I knew we were in for good news. Jeff had a complete pathological response! All of the cancer was killed in the esophagus and no evidence of cancer in the nodes...I did ask if they could tell if there had ever been cancer in the nodes and he said they didn't know that. I also forgot to ask how many nodes were removed, but we will see the report soon enough. We began crying immediately, for once they were happy tears!!

Our surgeon said that he always suggests follow up chemo, and our oncologist had said to expect to be put on more chemo. The surgeon explained that even though he had a great response, he is young and healthy and had a good response to the drugs before so more chemo would be like insurance. I think that with everything I have learned from this board, my vote was for more chemo. Ultimately Jeff gets to make the decision, I was surprised that as soon as the surgeon left the room he turned to me and through his tears he said "I am going to do the chemo, I haven't come this far not to do the chemo". I am so proud of my very brave and strong husband. He is my hero!!

Niki
Wife of Jeff T2N1M0
Ivor Lewis 9/6/11

TerryV

Oh wow.....
Niki,

I've got tears of joy for you and Jeff in this as well! How flippin' wonderful is that report? Absolutely amazing! What an incredible "Junior class" this has been

I am SO Pleased for you both! Get your booties home, relax a bit, have a day *without* the word cancer intruding into every conversation, and go about finding "your happy place" again.

CONGRATULATIONS!

Terry

Donna70

take the pain meds
Hi Niki,
Such happy news!!! I had the IL surgery and was in 2 wks and am amazed that Jeff is able to go home so soon. You do get the rib pain if they went in thru the ribs and that is when the oxycodone/contin really can help. It is such great news about no cancer in the nodes and all gone from the esophagus. I am almost 2 yrs out from surgery and had post op chemo and my dr said in my case one positive node but think he would have done it without the positive node and he called it my insurance. All clear scans for me so far and hoping so hard that Jeff is going the same way. It is overwhelming when you take the person home. My husband was a wonderful caregiver and even with my sister waiting for us, he was panicked when we walked in the house. But it all resolved. Just follow the eating instructions and tell him not to be discouraged from the sheer exhaustion taking a shower or maneuvering thru your house causes. Each day gets better. Home is always better than the hospital. I was 65 so I had a home nurse assigned to check me for the 1st 2 wks and set up the j tube feedings etc. Good luck and thanks for the great news. You have been a marvelous caregiver and advocate for Jeff.
Donna70

Joel C

Donna70 said:

take the pain meds
Hi Niki,
Such happy news!!! I had the IL surgery and was in 2 wks and am amazed that Jeff is able to go home so soon. You do get the rib pain if they went in thru the ribs and that is when the oxycodone/contin really can help. It is such great news about no cancer in the nodes and all gone from the esophagus. I am almost 2 yrs out from surgery and had post op chemo and my dr said in my case one positive node but think he would have done it without the positive node and he called it my insurance. All clear scans for me so far and hoping so hard that Jeff is going the same way. It is overwhelming when you take the person home. My husband was a wonderful caregiver and even with my sister waiting for us, he was panicked when we walked in the house. But it all resolved. Just follow the eating instructions and tell him not to be discouraged from the sheer exhaustion taking a shower or maneuvering thru your house causes. Each day gets better. Home is always better than the hospital. I was 65 so I had a home nurse assigned to check me for the 1st 2 wks and set up the j tube feedings etc. Good luck and thanks for the great news. You have been a marvelous caregiver and advocate for Jeff.
Donna70

You’ll be the best nurse ever Niki.
There is no nurse in the world that is going to take care of Jeff like you will, that I’m sure of. I’m so happy to hear things have worked out in the best way possible. I remember I couldn’t get out of the hospital fast enough. I would have jumped out the window if I thought I could get to the car quicker that way. But on a more serious note I agree 100% with the approach to do additional chemo even with the clean path. I also had a complete response and when I asked about follow-up chemo I was told it was not necessary. Well looking back that was a huge mistake. To Jeff’s point he’s come way too far to be stopped at the goal line.

You guys are great,
Joel

Ericalynn

Going Home
Niki,
I am so happy that Jeff gets to go home with a clean pathology report. I have a funny feeling that we will not be so lucky. The tumor was not gone (it had shrunk a little) but like your Jeff I am hoping that John will understand that he has come this far a little more chemo just one more "little" bump in the road to being CANCER FREE! This is the first time I have heard that EC patients get chemo even if path report is negative, I told John that if path report was negative chemo is over but I better update that discussion. Not today John is having a rough day small leak he is devastated. So happy that you get to go home and start the healing process and sleep in your own bed. You will be a great nurse and remember to reach out if you need help. Keep us posted!
Erica

TerryV

Ericalynn said:

Going Home
Niki,
I am so happy that Jeff gets to go home with a clean pathology report. I have a funny feeling that we will not be so lucky. The tumor was not gone (it had shrunk a little) but like your Jeff I am hoping that John will understand that he has come this far a little more chemo just one more "little" bump in the road to being CANCER FREE! This is the first time I have heard that EC patients get chemo even if path report is negative, I told John that if path report was negative chemo is over but I better update that discussion. Not today John is having a rough day small leak he is devastated. So happy that you get to go home and start the healing process and sleep in your own bed. You will be a great nurse and remember to reach out if you need help. Keep us posted!
Erica

Clean Path = No Post Op chemo @ Stoddard
Nick's oncologist said that he would see Nick in a month or two. There has been no mention of post-op chemo here. I haven't decided if that's a good thing or not. Joel C's reoccurance makes me rethink on post-op chemo.....

John's day *will* improve, Erica. and so will yours!

Terry

Ericalynn

TerryV said:

Clean Path = No Post Op chemo @ Stoddard
Nick's oncologist said that he would see Nick in a month or two. There has been no mention of post-op chemo here. I haven't decided if that's a good thing or not. Joel C's reoccurance makes me rethink on post-op chemo.....

John's day *will* improve, Erica. and so will yours!

Terry

What to do, what to do!`
Terry, WOW more research, nothing is easy is it! I know it will get better I am just sooooo tired so a little emotional, but you and everyone here are so supportive I know it will get better and we in the junior class are the lucky ones.

sangora

Ericalynn said:

What to do, what to do!`
Terry, WOW more research, nothing is easy is it! I know it will get better I am just sooooo tired so a little emotional, but you and everyone here are so supportive I know it will get better and we in the junior class are the lucky ones.

Congrats to you both
Jeff, you give all of us hope and Niki you will be a first rate caregiver. Prayers of thanksgiving to you both. Keep us posted on how things continuen to improve. Sam

ArchTB

Great news!
This sounds terrific! Congratulations!
Olya and Tom

AngieD

ArchTB said:

Great news!
This sounds terrific! Congratulations!
Olya and Tom

So happy for you!
Niki and Jeff,
I have tears of happiness in my eyes---and I just met you! That is such wonderful news!!! I think it's great that you're both on the same page and going forward with more chemo. Praying it will be a speedy and uneventful recovery.
Angie

NikiMo

Donna70 said:

take the pain meds
Hi Niki,
Such happy news!!! I had the IL surgery and was in 2 wks and am amazed that Jeff is able to go home so soon. You do get the rib pain if they went in thru the ribs and that is when the oxycodone/contin really can help. It is such great news about no cancer in the nodes and all gone from the esophagus. I am almost 2 yrs out from surgery and had post op chemo and my dr said in my case one positive node but think he would have done it without the positive node and he called it my insurance. All clear scans for me so far and hoping so hard that Jeff is going the same way. It is overwhelming when you take the person home. My husband was a wonderful caregiver and even with my sister waiting for us, he was panicked when we walked in the house. But it all resolved. Just follow the eating instructions and tell him not to be discouraged from the sheer exhaustion taking a shower or maneuvering thru your house causes. Each day gets better. Home is always better than the hospital. I was 65 so I had a home nurse assigned to check me for the 1st 2 wks and set up the j tube feedings etc. Good luck and thanks for the great news. You have been a marvelous caregiver and advocate for Jeff.
Donna70

Home safe and sound
Hi Donna,

Thanks for your kind words and encouragement! I certainly did not imagine I would be a caregiver at such a young age, and I really don't like that word that much, it implies that Jeff as not able to do anything for himself which is not true at all. I prefer to think of myself as his partner in crime. I knew the second he was diagnosed that we would go at this thing full speed. This is by far the hardest thing we have gone through together, but it has made us a better couple.

I will make sure that he keeps ahead of the pain, as I have read it can be hard to get a handle on once it takes over.

Niki

NikiMo

Ericalynn said:

What to do, what to do!`
Terry, WOW more research, nothing is easy is it! I know it will get better I am just sooooo tired so a little emotional, but you and everyone here are so supportive I know it will get better and we in the junior class are the lucky ones.

Post op chemo
Hi ladies,

So the reason the surgeon suggested the post op chemo for Jeff is because of those two suspicious nodes that popped up in the final scan. There is no cancer now, but they can't be sure there never was. The oncologist didn't think they were cancerous, and since they were in the range of the tumor he said to just get them removed. Our oncologist since the beginning said to prepare yourself for more chemo after surgery, it is because of the nodes, they are a pathway to spread the cancer. The surgeon also said if Jeff was older, or had problems the first time around with chemo he would not suggest doing it. Jeff was extremely lucky with chemo the first time, so we are confident he can get through another round. The other thing is that post-op chemo is at a lower dose so side effects should be less.

All I can say is that UofP and John Hopkins are both nationally recognized cancer institutes and the surgeon at Hopkins is an expert in this field. If they disagreed with each other it might leave me scratching my head, but I am very confident in their decisions! Again though this is for Jeff's case. The doctor's have both said there are no studies that prove the worth of post op chemo if the path report is clean. Of course if a node comes back positive I would scratch my head if they said no chemo.

Good luck with the path report Erica.

I couldn't have made this trip without the two of you!!

Niki

NikiMo

Joel C said:

You’ll be the best nurse ever Niki.
There is no nurse in the world that is going to take care of Jeff like you will, that I’m sure of. I’m so happy to hear things have worked out in the best way possible. I remember I couldn’t get out of the hospital fast enough. I would have jumped out the window if I thought I could get to the car quicker that way. But on a more serious note I agree 100% with the approach to do additional chemo even with the clean path. I also had a complete response and when I asked about follow-up chemo I was told it was not necessary. Well looking back that was a huge mistake. To Jeff’s point he’s come way too far to be stopped at the goal line.

You guys are great,
Joel

Thanks Joel
Hi Joel,

Thanks for the encouraging words, my nerves have calmed since we arrived home and I am back in my element. Just like you Jeff did practically run for the door...well he jumped into the wheelchair..haha.

Om that serious note, a large part of the reason Jeff was so quick to say ok for chemo was that I had shared with him your EC story. You are both the same age, same stage, same healthy state before diagnosis, and clear pathology report. I wanted to make sure he knew your story as I truly believe that folks out there should learn from what you are sharing with us. I didn't want to scare him, but he needs to know the reality of this cancer. He is 100% on board with more chemo, just like you said he has come too far too quit now. I am sorry that post-op chemo was not offered to you, from what I understand it is not normal protocol to provide more chemo with a clean path report. And while the cancer could still return even with more chemo, we have to at least be able to say we tried everything to beat this.

I want to say again how sorry I am for your recurrance, but I strongly suggest you check out the ACOR list. I believe Paul gave you the address to sign up, but I can PM you if you need it again. You can go on and read through the archives. You have been such a positive influence for me throughout this journey, I would just really like you to see another perspective about living with and going into remission after recurrance. I know the importance of being realistic, but I really believe the reality of this cancer is changing. Ultimately whatever you decide everyone will be behind you. I would just feel terrible if I knew about these other cases and didn't share that with you.

Again thank you for all of your encouragement, appreciated more than you know!

Niki

NikiMo

sangora said:

Congrats to you both
Jeff, you give all of us hope and Niki you will be a first rate caregiver. Prayers of thanksgiving to you both. Keep us posted on how things continuen to improve. Sam

Thanks for the prayers!
Sam, thank you for the prayers. You will be in my prayers as you being your next chemo cycle.

Niki

NikiMo

ArchTB said:

Great news!
This sounds terrific! Congratulations!
Olya and Tom

Thanks Olya and Tom
Hi guys,

I hope Tom is making progress in recovery and is feeling better everyday. I want to give you a special thank you because you shared with us your story about your suspicious nodes and the clean path report. I kept that story with me, and whenever I got anxious I would just remind myself of what you had said.

Hope you are enjoying taking your pup to the dog park, we have a dachshund as well...cool little dogs! Can't wait to get our guys back to the park.

Niki

NikiMo

AngieD said:

So happy for you!
Niki and Jeff,
I have tears of happiness in my eyes---and I just met you! That is such wonderful news!!! I think it's great that you're both on the same page and going forward with more chemo. Praying it will be a speedy and uneventful recovery.
Angie

Thanks Angie
Angie,

I know that feeling of reading the board and getting overjoyed when reading the good news of others, that is the main reason I shared. I understand that your husband in on Oxaliplatin and Xeloda, Jeff was on Oxaliplatin and 5-fu and radiation as you can see it worked very well for him. Just be careful with the cold stuff, Jeff once took a sip of cold water and said it felt like razor blades....yikes!! Hoping for the best for you two. I had not yet heard of anyone else on the same chemo regimen as us, I was starting to think my oncologist didn't know what he was doing....boy was I wrong!!

Niki

sandy1943

So glsd Jeffs report came
So glsd Jeffs report came back good! I had one positive node still after surgery, But after starting chemo I had complications and couldn't finish it. I felt I was given a death sentence. My followup scan showed I was NEd and after three years ,I thank God, I still am. Even without an active node I would still want precationary chemo. I've known too many that didn't have it that had reoccurance.
There is no greater joy than to get good reports. Now Jeff is on his way to his "new" normal self, which I might add, in my case ,is wonderful. It's different, but good. I'm so blessed!
Sandra

NikiMo

TerryV said:

Oh wow.....
Niki,

I've got tears of joy for you and Jeff in this as well! How flippin' wonderful is that report? Absolutely amazing! What an incredible "Junior class" this has been

I am SO Pleased for you both! Get your booties home, relax a bit, have a day *without* the word cancer intruding into every conversation, and go about finding "your happy place" again.

CONGRATULATIONS!

Terry

I actually am breathing easier!
Hi Terry,

Didn't know it was possible, but when the surgeon came practically running into the room I knew I was about to get that feeling you described. As soon as the words were out of his mouth I burst into tear and was laughing all at the same time. After the tears stopped the feeling of pressure lifted off of me. What a great feeling! Now I just need to pray every day for peace and no reoccurance!

Thank you for being there for me on this journey,

Niki

Heeran

Awesome
Awesome awesome news. I'm so happy for you guys. Another victory on the fight against EC.