Good day today :)

NikiMo
NikiMo Member Posts: 342
in Esophageal Cancer #1
Hi all,

Just an update on Jeff. This week we met with his oncologist (Tuesday) and then surgeon today. Both of them remarked that he looks very good for someone only three weeks out from surgery. Both also agreed that Jeff should keep his j-tube until after chemo, just in case, but they said he should try very hard to not rely on it for calories. So far we are just flushing it, he has lost six pounds, but gained two back since coming home from surgery. Our surgeon said he wants to call his office every week and let the nurses know what his weight is, and they want him to start journaling his food again just to make him aware and help him learn how to get all of his calories in. He also cleared him for a full diet. Jeff has three weeks to build his strength and then he will begin post op chemo. I am anxious about chemo this time around, he isn't as strong as he was the first time around but he is a trooper and we will get through this.

The reason I am having such a good day is that he laughed and he tapped his head and toe to music in the car on the way home from the surgeons. We also had to eat lunch out since we were two hours from home, he didn't appear to be anxious and actually said his crab cake tasted good. This probably sounds so stupid, but for me this was huge!! My husband always cracked me up before his diagnosis, he was so funny and he loved making me laugh. Ever since this surgery he had been a different person entirely, he is anxious all the time and looks around like he is mad at the world. I know he is in pain and I don't expect him to crack jokes all of the time, but I really started missing that man and to be quite honest I thought he was maybe gone forever. But, today I saw a glimmer of my guy, the happy go lucky goof ball that I love SO much. I know it will take time for him to feel 'normal' again and that is ok. I am sure chemo is going to be a major pain, and I do not look forward to having to deal with oxaliplatin again (that drug is just annoying, reactions to cold things). But, we are going for a cure here so I know we are blessed. I have renewed hope from just seeing a little bit of normal Jeff again.

Hope everyone is doing as good as can be expected, hugs to all,

Niki
Wife to Jeff T2N1M0
IL 9/6/11
Post-op chemo to begin 10/20/11

Comments

  • ritawaite13
    ritawaite13 Member Posts: 236
    #2
    Celebrate!
    Hi Nikki,
    Just smile and celebrate those good days!! I know I sure do when they happen. My husband is stage IV and suffered a stroke 11 days after his EC diagnosis. He still cracks me up at times too. I know what you're saying about the mad at the world thing though. I think there's just so much anger that comes with this nasty diagnosis that it's hard not to be angry. I'm so happy for you that he was able to have surgery and is looking forward to a cure. I'm sure you'll have him back to his old self in short order. Wishing you both all the best.
    Rita
  • Lynn_Paul
    Lynn_Paul Member Posts: 22 Member
    #3
    post op chemo
    Niki
    I'm thrilled you had a good day. Enjoy the little victories. Attitude is extremely important!
    I was really nervous about post op chemo for my husband. He did not handle the pre-op chemo that well. He had a reaction to the first treatment and ended up in the hospital for a week. He did really well after the surgery. His experience with post op chemo was much better than we had hoped for. He even went back to work while on chemo. What helped a lot was having something positive to think about. We bought a boat which was something he had wanted for a long time. It was our plan to get one after we had all three kids thru college. We decided not to wait. Turned out to be the best medicine ever. He and our son spent so many hours researching and looking on line for the boat of his dreams. They found it 1,000 miles away from where we live. We took a road trip and brought it home. It needed a little work, and we spent a lot of time looking for what we needed and planning where to go boating over the summer. Our oldest daughter moved back home after graduating from college in 2010. She decided she really wanted a puppy. (We already have 2 dogs). Adding a puppy to the mix was interesting and exciting and again something else to focus on. I wish you and your husband the best of luck.

    Lynn
  • mardigras
    mardigras Member Posts: 215 Member
    #4
    Fabulous new Niki
    Hi Niki,
    Thank you for sharing your wonderful news.
    There is so much anxiety and pain on here that to hear about what may seem small triumphs
    to other people was really great.
    I'm sure you told Jeff that he made you feel wonderful and that this is another milestone
    for you both. Long may it continue Niki and God Bless you both,
    We are only three weeks into our journey and I can empathise with the missing person syndrome. It seems like my Rob and his funny, lighthearted outlook on life is hiding.
    It made me feel good to read your post.
    Hugs and Prayers
    Marci x
  • JimboC
    JimboC Member Posts: 264
    #5
    Niki, I'm glad to hear Jeff
    Niki, I'm glad to hear Jeff is having better days. I had my surgery back on July 1st and I can say every day is a little better. I am one week away from finishing my post-op chemo. Unfortunately my counts are down so they took me off for a week so technically, I guess I'm two weeks away from finishing. I found my post-op chemo to be a little more difficult that pre-op. I've also seen people have it easier after surgery than it was before. I guess it depends on the person. Tell Jeff not to be discouraged if it is rougher. My oncologist tells me all the time, we're doing this in hopes of a cure.

    As for eating, it gets better too. I am at the point where I can eat just about anything I want but just in a much smaller portion. I'm also making plans for returning to work. It takes some time but things do get more "normal" after surgery. You guys take care and I'm so glad to hear things are improving.
  • Cora11
    Cora11 Member Posts: 173
    #6
    JimboC said:

    Niki, I'm glad to hear Jeff
    Niki, I'm glad to hear Jeff is having better days. I had my surgery back on July 1st and I can say every day is a little better. I am one week away from finishing my post-op chemo. Unfortunately my counts are down so they took me off for a week so technically, I guess I'm two weeks away from finishing. I found my post-op chemo to be a little more difficult that pre-op. I've also seen people have it easier after surgery than it was before. I guess it depends on the person. Tell Jeff not to be discouraged if it is rougher. My oncologist tells me all the time, we're doing this in hopes of a cure.

    As for eating, it gets better too. I am at the point where I can eat just about anything I want but just in a much smaller portion. I'm also making plans for returning to work. It takes some time but things do get more "normal" after surgery. You guys take care and I'm so glad to hear things are improving.

    good to hear
    such good news each step of the way Jeff and Niki. I assume little setbacks now and then, but sounds like you are really moving forward. Thanks for sharing as my husband will be finished with pre-op chemo in a few weeks and embarking on surgery in about 2 months. What made them decide to do post-op chemo ?
    Cora
  • jss2011
    jss2011 Member Posts: 132
    #7
    Cora11 said:

    good to hear
    such good news each step of the way Jeff and Niki. I assume little setbacks now and then, but sounds like you are really moving forward. Thanks for sharing as my husband will be finished with pre-op chemo in a few weeks and embarking on surgery in about 2 months. What made them decide to do post-op chemo ?
    Cora

    Hi Niki
    Hi Niki

    It is so nice when they do something "normal" you haven't seen for awhile.
    Hope the post op chemo goes well.

    Hugs,
    Julie
  • TerryV
    TerryV Member Posts: 887
    #8
    I was wondering about you two!
    Glad to hear that you're seeing glimmers of the old Jeff. I know exactly what you mean!

    Things will return to a "new" normal - not all that far off the old one. Patience is what we need now - the docs have given us time :)

    Prayers and blessings to you both!

    Terry
  • chemosmoker
    chemosmoker Member Posts: 501
    #9
    CELIBATE FOOT TAPPING AND CRAB CAKES ALL DAY!!!
    Niki (and Jeff),

    NOT A THING stupid about any of that! Hell, if he even cracks a slight smirk and eats crab cakes in the trunk of the car, nothing and I mean nothing is stupid about seeing a glimmer of hope and feeling that things are going up instead of down. It's always the smallest of things that can make the biggest of differences.

    I am so happy for you, for Jeff, and for a brighter future. Yes, chemo is going to be a nightmare and a **** all over again. THIS TIME no one can try to let you believe that it won't be THAT bad or that the side effects are manageable. Just continue to be there for him and know that he will know when enough is enough, or sail through it and finish with this round easily once and for all (yes that really does happen, too!). Either way, he is free of the surgery, on the other side, in the Junior class, and now just needs to do the mop up work and do the best he cam handle as much as he can, and get to the NED scan side of life.

    I wish you two all the hope, luck and success in the world. We will continue to pray for you both and send love, hugs, and energy as needed!

    God bless and good work. Celibate ANYTHING that feels good! THIS IS YOUR LIVES!

    -Eric
  • Joel C
    Joel C Member Posts: 174
    #10
    chemosmoker said:

    CELIBATE FOOT TAPPING AND CRAB CAKES ALL DAY!!!
    Niki (and Jeff),

    NOT A THING stupid about any of that! Hell, if he even cracks a slight smirk and eats crab cakes in the trunk of the car, nothing and I mean nothing is stupid about seeing a glimmer of hope and feeling that things are going up instead of down. It's always the smallest of things that can make the biggest of differences.

    I am so happy for you, for Jeff, and for a brighter future. Yes, chemo is going to be a nightmare and a **** all over again. THIS TIME no one can try to let you believe that it won't be THAT bad or that the side effects are manageable. Just continue to be there for him and know that he will know when enough is enough, or sail through it and finish with this round easily once and for all (yes that really does happen, too!). Either way, he is free of the surgery, on the other side, in the Junior class, and now just needs to do the mop up work and do the best he cam handle as much as he can, and get to the NED scan side of life.

    I wish you two all the hope, luck and success in the world. We will continue to pray for you both and send love, hugs, and energy as needed!

    God bless and good work. Celibate ANYTHING that feels good! THIS IS YOUR LIVES!

    -Eric

    Simple things are the best.

    Niki I’m so pleased to hear all is going well with Jeff. It’s really true the simple things are the best. It was winter when I returned home from surgery and I remember how great something as simple as sitting by the woodstove felt. Or going for my first real walk or taking Tammy out for a bite to eat, it was like a first date, you’re going to love it. Just wait until you see the flowers bloom next spring, you and Jeff will not believe how something so simple can be so beautiful.

    Keep up the great work,
    Joel
  • Donna70
    Donna70 Member Posts: 852 Member
    #11
    Joel C said:

    Simple things are the best.

    Niki I’m so pleased to hear all is going well with Jeff. It’s really true the simple things are the best. It was winter when I returned home from surgery and I remember how great something as simple as sitting by the woodstove felt. Or going for my first real walk or taking Tammy out for a bite to eat, it was like a first date, you’re going to love it. Just wait until you see the flowers bloom next spring, you and Jeff will not believe how something so simple can be so beautiful.

    Keep up the great work,
    Joel

    Niki happy for you
    Niki,
    So happy to see this happy update!!! Jeff will get thru the chemo especially since his drs seem so in tune with keeping tabs on weight and such. My motto has been I get much pleasure from small things, and it sounds like you have learned the secret of a happy life, be thankful for Jeff tapping to the music and love that he enjoyed his crab cake, Baltimore sure is the home of those. It was the first thing I really ate when I got home from surgery. Enjoy this time and just handle the post op chemo one step at a time, one day at a time. You can always ask for advice here, lots of us are enjoying many small and happy moments after going thru post op chemo. take care and thanks for sharing your joy with all of us.
    Donna70

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