Something to look forward to
I see a lot of new people on the site, scared and desperate for some encouragement. I am still afraid to make any bold statements, but just to give people going through the treatment something to look forward to, here is a short comparison of where we were two months ago and where we are now.
May 11 (6 weeks after the end of chemo-radiation, 5 days before MIE):
- 149 pounds
- Still having nausea, but not throwing up all the time
- Still not much appetite
- Scaring from radiation causing difficulty swallowing, but no feeding tube
- Manage to gain 2 pounds back (under the threat "eat or j-tube")
- General weakness
- Emotionally and physically exhausted
- T3N1M0
July 11 (8 weeks after MIE):
- 154 pounds
- All tubes out, incisions healed, but still taking precautionary blood thinners, heart pills and pain meds for occasional back pain
- Got used to sleeping on the wedge
- Walking to the park with the dog as we used to
- Going out for dinners as we used to
- Eat anything, including deserts, very enthusiastically (I have to watch that he does not overeat)
- Back to working on his projects (he is an architect)
- Not yet back to driving (still taking meds), but managed a 9 hour ride on the bus from upstate NY, where we went hiking, fishing, BBQing, and enjoying fireworks
- Going to see U2 next week
- Laughing a lot and having good time
- So far NED
Olya and Tom
Tom, 37 y.o.,
Diagnosed Dec. 8 2010, T3N1M0
Chemo: cisplatin + irinotecan + 28 radiations
MIE May 17 2011 at MSKCC
Comments
-
Thank you!
Olya,
Thank you for taking the time to write this post about Tom. You are right, there are a lot of newly diagnosed on here, we are on of them. My husband is in week 4 and like many others we are anxious of what lies ahead. It is so encouraging to see that the two of you are working on returning to normal. I know that my life will never be the same, and I know Jeff will need to work on his new normal both physically and emotionally, but I love hearing that you are back to doing things you did before EC. So happy to hear that Tom is NED, I hope and pray for many many many more years of health ahead for both of you.
Again thank you for outlining what lies ahead
Niki0 -
Life is never the sameNikiMo said:Thank you!
Olya,
Thank you for taking the time to write this post about Tom. You are right, there are a lot of newly diagnosed on here, we are on of them. My husband is in week 4 and like many others we are anxious of what lies ahead. It is so encouraging to see that the two of you are working on returning to normal. I know that my life will never be the same, and I know Jeff will need to work on his new normal both physically and emotionally, but I love hearing that you are back to doing things you did before EC. So happy to hear that Tom is NED, I hope and pray for many many many more years of health ahead for both of you.
Again thank you for outlining what lies ahead
Niki
Niki,
Life is never the same for better or worse. But every day and every experience makes us richer, and there is always something to look forward to to keep us moving. Of course we are very worried about everything ahead of us and how many more NEDs Tom will get, but I think it is important to enjoy what you have and appreciate it.
I probably sound like my grandma sharing the wealth of knowledge, but these things are all true and real
It's sad that we start to appreciate these banalities only when something bad happens.
Olya0 -
Great reportArchTB said:Life is never the same
Niki,
Life is never the same for better or worse. But every day and every experience makes us richer, and there is always something to look forward to to keep us moving. Of course we are very worried about everything ahead of us and how many more NEDs Tom will get, but I think it is important to enjoy what you have and appreciate it.
I probably sound like my grandma sharing the wealth of knowledge, but these things are all true and real It's sad that we start to appreciate these banalities only when something bad happens.
Olya
And love the little dog, too!0 -
Thank-you!
Olya and Tom-
Thank-you for the hopeful post. Good news is what alot of us need to hear on this site! I think some of us joined during a stretch where there may have been more bad news than normal.
Good luck with your next 200 scans!
I am finishing up week five of my chemo/rad (Taxol/Carboplaten)...managing to hold my weight...my eating seems to be getting better...working, playing golf, and trying to keep busy.
I can imagine how every activity would take new importance. My wife and I have never been closer, and if we are fortunate enough to get through this, we have already agreed to make some big changes in our lives!
As one of the members of the "freshman Class", I appreciate the time you took to share!
Jeff0 -
Great words of encouragement
Your words are appreciated! I LOVE that you guys are going to U2 just 9 shorts weeks after surgery. That is WONDERFUL!
Live life to its fullest - and it sounds as though you both are. Glad to hear that Tom is NED and pray that it continues for all future scans.
Best of luck and please keep sending us the "positives". I'm another of the "freshman" class and I look forward to my husband's graduation.0 -
GREAT NEWS!TerryV said:Great words of encouragement
Your words are appreciated! I LOVE that you guys are going to U2 just 9 shorts weeks after surgery. That is WONDERFUL!
Live life to its fullest - and it sounds as though you both are. Glad to hear that Tom is NED and pray that it continues for all future scans.
Best of luck and please keep sending us the "positives". I'm another of the "freshman" class and I look forward to my husband's graduation.
So glad to hear how well you two are doing. It is wonderful
that life is starting to normalize. We need to share the
positives and give hope to others and YOU have!
Linda0 -
Great post Olyalinda1120 said:GREAT NEWS!
So glad to hear how well you two are doing. It is wonderful
that life is starting to normalize. We need to share the
positives and give hope to others and YOU have!
Linda
I agree that there can be lots to look forward to post treatment and Surgery. I was diagnosed last summer with 2B (T2N1M0) EC. Did six rounds of chemo (carboplatin & taxol) with 28 rounds of radiation. MIE was 11/18/10 and I have to say at 8 months out life is pretty darn good. I’m working full time, eating just about anything I want (just not as much) and exercising every day. My wife and I are doing the things we’ve always done. We just order tickets to a Red Sox game next week and I know that we’ll have a great time like we always have. We also hit the local craft brew pub once a week for a couple of beers and a bite to eat and again we enjoy that like we always have, maybe more. I bought a kayak a couple of months ago and have been having a ball going fishing and exploring. This is just a small example of how post EC can be the list goes on and on.
When I got my diagnosis last summer I thought I would never get back to where I am today. I thought this based on all the terrible things I read on the web and yes I know that those things can happen too but life can be good again. Jthomas mentions that he and his wife plan “to make some big changes in our lives”. I have to say my wife and I have done the same and are happy we have.
Hang in there my friends,
Joel0 -
We're all freshman!Joel C said:Great post Olya
I agree that there can be lots to look forward to post treatment and Surgery. I was diagnosed last summer with 2B (T2N1M0) EC. Did six rounds of chemo (carboplatin & taxol) with 28 rounds of radiation. MIE was 11/18/10 and I have to say at 8 months out life is pretty darn good. I’m working full time, eating just about anything I want (just not as much) and exercising every day. My wife and I are doing the things we’ve always done. We just order tickets to a Red Sox game next week and I know that we’ll have a great time like we always have. We also hit the local craft brew pub once a week for a couple of beers and a bite to eat and again we enjoy that like we always have, maybe more. I bought a kayak a couple of months ago and have been having a ball going fishing and exploring. This is just a small example of how post EC can be the list goes on and on.
When I got my diagnosis last summer I thought I would never get back to where I am today. I thought this based on all the terrible things I read on the web and yes I know that those things can happen too but life can be good again. Jthomas mentions that he and his wife plan “to make some big changes in our lives”. I have to say my wife and I have done the same and are happy we have.
Hang in there my friends,
Joel
Being the wife of a stage IVB, diagnosed in January 2011, I still feel like a freshman here, and likely always will. My husband is not a candidate for surgery or radiation, so good ole fashioned chemo is all we've got. He completed one round, and the doctor found that the tumours have shrunk, so we have been on a chemo holiday since May 14th. His eating has been overall very good, a few bad days here and there and he has had a lot of pain in his stomach area. We are debating returning for another round of chemo, but still, 2 months later are unable to make the decision. We've been debating the pros and cons, and I've posted several queries here. It's such a hard decision to make! I know many of you 'seasoned vets' have told me your stories, and there are pros and cons either way. We are seeing the doc next week, and hope that he can give us some more guidance and information.
I just wanted to say..... KEEP DOING WHAT YOU ENJOY!!! Lee and I just got back from a week in Vegas, and are looking forward to visiting a cottage on the lake in a couple weeks. He is enjoying spending time with friends and eating out, and gardening. We are trying to do all the fun things we can think of. While we were in Vegas, he was feeling lousy, but still pushed himself to go to 6 shows, and walk the strip (in 110 degree heat! Keep in mind we're Canadian, and wilt easily) and even accompanied me to get a tattoo. (gulp!) He ate very little the whole time and had a lot of emotional moments..... but still, he managed to enjoy a lot of it, and we were able to have some wonderful moments together. This is the most important thing, and one that I'm sure we all wish we were more aware of earlier..... enjoy every moment, don't let life slip you by! Why do we spend so much time doing nothing? Then all of a sudden disaster strikes and we have regrets and should have, could haves. Lets all get out there and just live and enjoy every moment with our loved ones.... BEFORE DISASTER STRIKES!
Glad to hear that so many of you are feeling good, and doing well with your treatments. For a while there, there was nothing but terrible news posted here. There is hope, especially for those of you eligible for surgery and radiation. Keep fighting, and especially for all of you being the caregiver, trust me I know how hard and emotional that is. Sometimes I wonder if it's harder for us to watch our loved ones suffer than it is for them, going through it.
Oh, one quick question.... what the heck is magic mouthwash? Since I was away all last week, I'm still trying to catch up on everyone's postings, but have yet to find anything. Lots of you have mentioned it recently.
Take care, have a wonderful fun week!
Chantal0 -
My husband and I have talked about exactly thisDaisylin said:We're all freshman!
Being the wife of a stage IVB, diagnosed in January 2011, I still feel like a freshman here, and likely always will. My husband is not a candidate for surgery or radiation, so good ole fashioned chemo is all we've got. He completed one round, and the doctor found that the tumours have shrunk, so we have been on a chemo holiday since May 14th. His eating has been overall very good, a few bad days here and there and he has had a lot of pain in his stomach area. We are debating returning for another round of chemo, but still, 2 months later are unable to make the decision. We've been debating the pros and cons, and I've posted several queries here. It's such a hard decision to make! I know many of you 'seasoned vets' have told me your stories, and there are pros and cons either way. We are seeing the doc next week, and hope that he can give us some more guidance and information.
I just wanted to say..... KEEP DOING WHAT YOU ENJOY!!! Lee and I just got back from a week in Vegas, and are looking forward to visiting a cottage on the lake in a couple weeks. He is enjoying spending time with friends and eating out, and gardening. We are trying to do all the fun things we can think of. While we were in Vegas, he was feeling lousy, but still pushed himself to go to 6 shows, and walk the strip (in 110 degree heat! Keep in mind we're Canadian, and wilt easily) and even accompanied me to get a tattoo. (gulp!) He ate very little the whole time and had a lot of emotional moments..... but still, he managed to enjoy a lot of it, and we were able to have some wonderful moments together. This is the most important thing, and one that I'm sure we all wish we were more aware of earlier..... enjoy every moment, don't let life slip you by! Why do we spend so much time doing nothing? Then all of a sudden disaster strikes and we have regrets and should have, could haves. Lets all get out there and just live and enjoy every moment with our loved ones.... BEFORE DISASTER STRIKES!
Glad to hear that so many of you are feeling good, and doing well with your treatments. For a while there, there was nothing but terrible news posted here. There is hope, especially for those of you eligible for surgery and radiation. Keep fighting, and especially for all of you being the caregiver, trust me I know how hard and emotional that is. Sometimes I wonder if it's harder for us to watch our loved ones suffer than it is for them, going through it.
Oh, one quick question.... what the heck is magic mouthwash? Since I was away all last week, I'm still trying to catch up on everyone's postings, but have yet to find anything. Lots of you have mentioned it recently.
Take care, have a wonderful fun week!
Chantal
Hello Chantal
Your comment
"Sometimes I wonder if it's harder for us to watch our loved ones suffer than it is for them, going through it."
is something that my husband and I have discussed at length. He and I agree with you for the simple fact that as the patient, he is actively doing *something* to correct/contain/decrease this awful disease. As the caregiver, I can only watch and wait to help when needed/wanted. It's that lack of active participation that I am so frustrated by. I like to "fix" things. I'm not often one to sit by the sidelines and wait, but I guess that's my role now. That and shoulder to cry on as needed
Best wishes to you both!0 -
caregiversTerryV said:My husband and I have talked about exactly this
Hello Chantal
Your comment
"Sometimes I wonder if it's harder for us to watch our loved ones suffer than it is for them, going through it."
is something that my husband and I have discussed at length. He and I agree with you for the simple fact that as the patient, he is actively doing *something* to correct/contain/decrease this awful disease. As the caregiver, I can only watch and wait to help when needed/wanted. It's that lack of active participation that I am so frustrated by. I like to "fix" things. I'm not often one to sit by the sidelines and wait, but I guess that's my role now. That and shoulder to cry on as needed
Best wishes to you both!
This is a quote from the book I'm reading, it's not related in any way to cancer, but it totally sums up the feeling we caregivers have.....
"I can bear pain myself, he said softly, but I couldna bear yours. That would take more strength than I have."
(Diana Gabaldon, Outlander)
It is so hard to watch our loved ones suffer, and horrible to not be able to do anything to 'fix' it. It's a helpless, scary feeling. Wishing strength and wellness to all...
Chantal0 -
Exactly it!Daisylin said:caregivers
This is a quote from the book I'm reading, it's not related in any way to cancer, but it totally sums up the feeling we caregivers have.....
"I can bear pain myself, he said softly, but I couldna bear yours. That would take more strength than I have."
(Diana Gabaldon, Outlander)
It is so hard to watch our loved ones suffer, and horrible to not be able to do anything to 'fix' it. It's a helpless, scary feeling. Wishing strength and wellness to all...
Chantal
Thank you for sharing the quote. That hits it square on the nose.0 -
This comment has been removed by the ModeratorTerryV said:Great words of encouragement
Your words are appreciated! I LOVE that you guys are going to U2 just 9 shorts weeks after surgery. That is WONDERFUL!
Live life to its fullest - and it sounds as though you both are. Glad to hear that Tom is NED and pray that it continues for all future scans.
Best of luck and please keep sending us the "positives". I'm another of the "freshman" class and I look forward to my husband's graduation.0 -
Will need to discuss this info with hubbyunknown said:This comment has been removed by the Moderator
We haven't met with Dr. Kollmorgen since the placing of the medi-port and J-Tube. I'm certain that Nick will want to discuss his options with Doc as we have a great comfort level with him and the entire team.
Requesting a SECOND from Mayo isn't possible while Nick is in PreOp care due to the daily regime of radiation at Stoddard and the 4 hour one way drive to Mayo. Those two things aren't compatible.
Also, due to proximity of our family support system, Nick is hesitant to travel for medical care. Not sure that even an MIE will sway that, but we'll see. Discussion of alternatives may be challenging even as he has elected to follow an "I'll do what the doctors tell me" rather than an "investigate on my own" route.
Perhaps hearing from our Doc that MIE at Mayo could be an option would give him the confidence to pursue that alternative.0 -
PMs & Question for youunknown said:This comment has been removed by the Moderator
Corrected
Your statement - "So I placed a call and talked to his nurse who advised me that he ONLY performs the "Transhiatal" Esophagectomy. That would be the one with one large incision in the front and a smaller neck incision. While not as invasive as the two large cuts that the Ivor Lewis method requires, it is still very invasive."
I'm seeing Internet information on OPEN THE and LAP THE. How different is the LAP THE from an MIE? The expected hospital stay and time to from surgery to eating as stated by our surgeon during intial consultation compares favorably with what is recorded for the MIE. I'm guess from that - but will doublecheck with the doc - is that our surgeon performs LAP THE.0
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