Rickie's esophageal stretch

cher76
cher76 Member Posts: 292
in Esophageal Cancer #1
Well, we went for Rickie's esophageal stretch today. He decided to let our local GI doctor do it, so I didn't go into it feeling very good about the whole thing, but I have to let him do what he feels is best for him. As I sat there waiting, I started thinking how one year ago to the day Rickie had his first endoscopy. When the doctor came out and I asked how things looked, he asked me if I really wanted to know. (Why else would I ask?) When I said yes, he proceeded to tell me he had never seen anything like it before. Then I asked if he thought it was malignant and he said yes. And our life has never been, nor will ever be the same again. And here I sat waiting again, hoping and praying for the best. It took about an hour and then they took me back to recovery. When I got back there the first thing Rickie did was start coughing up blood. Needless to say it gave me quite a scare and I was doing all I could do to not totally break down and cry. I just could not deal with all that again. The nurse finally gave him a suction tube to suction it up, and we could see that it was slowly tapering off. He was in a lot of pain in the stomach area and they gave him both Demerol and fentynal through the IV. When the doctor came by he said that it had been very constricted and he could not get the scope through at first so he had to use the wire and then the dilators. He said there was some bleeding but he was able to get it dilated to about 14mm. He said he wants him to come back in 2 weeks so he can do it again. He must have seen the tears in my eyes because he again said he was just trying to get Rickie some relief and make it easier for him to eat. I am just concerned about the bleeding and the fact that this must leave scar tissue. Wouldn't that just make it harder to stretch again? Then Rickie asked him the question we were both anxious to hear. How did the tumor look as compared to last time in July? Well the answer was not what we hoped for. He said that it had grown both in the junction and in the stomach. So, that sounds to me like the chemo is no longer working. We knew this was a possibility as he has been on this drug combination for 6 months now, but nothing ever prepares you to hear it again. We already had an appointment with the local oncologist scheduled for tomorrow, so we will go and see what he has to say. Rickie has slept most of the afternoon so we have not really discussed anything. I know he is disappointed with the news, as am I, but I don't want him to see me upset. I have got to stay positive, and work to find out our next step. I think I need to call MD Anderson tomorrow and talk to our oncologist there. Rickie still has one more chemo treatment before we go up for scans, but if it is not working, why go through the chemo? Maybe we should just go up now. Usually we seen the local oncologist the day of chemo, and then a week later, which was last Friday, but at that time he told me he wanted to see him again in a week. I have been thinking there was something in the blood work he did not like or something that made him feel he needed to see him again, but I didn't question it because I guess I just didn't want to know, as I am sure many of you understand. So please keep us in your prayers as we begin the second year on this journey.
Cheryl
Wife of Rickie, dx EC stage IV, Oct. 2010

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    I am so sorry to hear that things did not go well
    Cheryl,

    I have been thinking about you and Rickie today and hoping things would go better with the stretch this time then they did last time. I wish the news had been better.

    I hope Rickie will be feeling better tomorrow and perhaps he can eat a bit better. It sounds like you need to talk to the folks at MD Anderson to define were things go from here.

    I will be praying that you both have a better day tomorrow and that the folks at MD Anderson have some good ideas about where to go next.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    3/14/2011 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • ritawaite13
    ritawaite13 Member Posts: 236
    #3
    Hi Cheryl,
    I'm sorry to hear
    Hi Cheryl,
    I'm sorry to hear your latest news. We are so new to this whole nightmare that I guess I didn't really realize all that the stretch entails. I thought it was a relatively simple procedure. Of course, I guess nothing about this disease is ever simple.
    I have to say that I was somewhat encouraged when I read that Rickie was diagnosed a year ago. My husband was diagnosed in July of this year and I pray that he, too, can have at least a year left. Unless, of course, he's just sick and miserable the whole time then I guess it becomes the quality of life vs the quantity of life question.
    I will pray for you and Rickie as you go forward.
    Rita
  • fredswilma
    fredswilma Member Posts: 185
    #4
    Hi Cheryl
    I am so sorry for
    Hi Cheryl
    I am so sorry for what you and Rickie are going through, hopefully the stretch even though painful will give Rickie some relief with eating and fluids.
    I will be thinking of you both as you find the next step of this journey.
    Ann
  • chemosmoker
    chemosmoker Member Posts: 501
    #5
    Hoping for better news...
    Cheryl,
    I, too am so sorry to hear that this has all been so negative for the both of you.
    I can only hope that MD Anderson has better hope for you.
    Please, keep us posted as to the progress and what they tell you.

    I will be praying for you.
    Nothing about this horrible disease is every easy to hear.

    God bless you and keep you,

    -Eric
  • jojoshort
    jojoshort Member Posts: 230 Member
    #6
    Hi Cheryl
    I can pretty well guess how you're feeling, but want to say "one day at a time". I like your idea to talk to the oncologist at MD Anderson before doing another chemo.
    I hope Rickie gets some relief from the stretch, and will be watching for your posts.

    Wishing you peace,
    Jo-Ann
  • jss2011
    jss2011 Member Posts: 132
    #7
    chemosmoker said:

    Hoping for better news...
    Cheryl,
    I, too am so sorry to hear that this has all been so negative for the both of you.
    I can only hope that MD Anderson has better hope for you.
    Please, keep us posted as to the progress and what they tell you.

    I will be praying for you.
    Nothing about this horrible disease is every easy to hear.

    God bless you and keep you,

    -Eric

    Sending prayers
    Hi Cheryl,
    I also hope you get some better news, that there is something else that may help.
    You and Rickie are in my prayers.

    Hugs,
    Julie
  • cher76
    cher76 Member Posts: 292
    #8
    Thank you everyone for all
    Thank you everyone for all the prayers and words of encouragement. The support here always lifts my spirits. So far so good, no bleeding since we left the hospital. Rickie has decided to take it slowly and will eat soft foods for a few day to allow for the esophagus to heal. I know we can get through this!
    Cheryl
  • Wpturner05
    Wpturner05 Member Posts: 114
    #9
    Prayers
    Cheryl,

    I hope today finds Rickie feeling better. Waht a difficult day yesterday must have been. Both of you continue to be in my thoughts and prayers today.

    Sincerely,
    Whitney
    wife of Kevin
    stage IVb
  • Donna70
    Donna70 Member Posts: 852 Member
    #10
    Wpturner05 said:

    Prayers
    Cheryl,

    I hope today finds Rickie feeling better. Waht a difficult day yesterday must have been. Both of you continue to be in my thoughts and prayers today.

    Sincerely,
    Whitney
    wife of Kevin
    stage IVb

    Cheryl so much to take in
    Dear Cher,
    Boy you had so much to take in and absorb yesterday between the bleeding after the stretch and then what the dr told you about the tumor. You are trying so hard not to let Rickie see you getting upset. I don't know if I could be so brave and strong. My thoughts and prayers are with you and Rickie and I hope that the drs do have another plan for his treatment. This is one heck of a road to go down, hugs to you, many people want so much for you both. take care,
    Donna70
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • TerryV
    TerryV Member Posts: 887
    #12
    Thinking of you both!
    Oh Cheryl! The sore spots on our tongues from biting down to keep our spouses from seeing - I get it.

    Bless you for being so strong for Rickie! Prayers and strength to Rickie as he heals.

    You are in our thoughts always.

    Terry
    wife to Nick, age 48
    dx T3N1M0 05/19/11
    THE 09/08/11
  • unclaw2002
    unclaw2002 Member Posts: 599
    #13
    cher76 said:

    Thank you everyone for all
    Thank you everyone for all the prayers and words of encouragement. The support here always lifts my spirits. So far so good, no bleeding since we left the hospital. Rickie has decided to take it slowly and will eat soft foods for a few day to allow for the esophagus to heal. I know we can get through this!
    Cheryl

    Cher,
    Thanks for the update
    Cher,

    Thanks for the update - hopefully the scans will show improvement that the other doctor couldn't see. Keep the faith and I will keep praying for you. I keep thinking about your summer trip to the Gulf of Mexico and how much you and Rickie enjoyd the time and family.

    Lots of love,
    Cindy
  • mrsbotch
    mrsbotch Member Posts: 349
    #14
    TerryV said:

    Thinking of you both!
    Oh Cheryl! The sore spots on our tongues from biting down to keep our spouses from seeing - I get it.

    Bless you for being so strong for Rickie! Prayers and strength to Rickie as he heals.

    You are in our thoughts always.

    Terry
    wife to Nick, age 48
    dx T3N1M0 05/19/11
    THE 09/08/11

    sherry is right
    That kick in the gut feeling Sherry talks about is so real.We all know the feelings you and Richie are having now. This cancer takes an incredible emotional toll like no other. Its the proverbial roller coaster ride that Loretta and Bill always talk about. Everytime I come back on the site I see another post like yours and my heart just aches.
    I am relieved Richie is no longer bleeding tho. That is a good thing. You are in my thoughts now and always


    Barbara
  • Daisylin
    Daisylin Member Posts: 365
    #15
    mrsbotch said:

    sherry is right
    That kick in the gut feeling Sherry talks about is so real.We all know the feelings you and Richie are having now. This cancer takes an incredible emotional toll like no other. Its the proverbial roller coaster ride that Loretta and Bill always talk about. Everytime I come back on the site I see another post like yours and my heart just aches.
    I am relieved Richie is no longer bleeding tho. That is a good thing. You are in my thoughts now and always


    Barbara

    Cheryl,
    I hope Rickie is on the mend by now, and able to eat again. You are in my thoughts, and I hope all is well.

    Chantal
  • cher76
    cher76 Member Posts: 292
    #16
    Daisylin said:

    Cheryl,
    I hope Rickie is on the mend by now, and able to eat again. You are in my thoughts, and I hope all is well.

    Chantal

    Thanks, Chantal.
    I have
    Thanks, Chantal.
    I have been thinking of you two also. How is Lee doing with his stretch? Has he attempted to eat anything at all? Rickie stayed on liquids the first day, then at soft foods the next and yesterday branched out to some little more solid foods yesterday. So far so good. He so wants to eat, just knows that he has to watch it. Last time when he had the bleeding, I think he rushed it and did not allow it to heal enough before he started eating solid foods. That happened on the third day after the stretch, so I think maybe we are in the clear now. He got a call from MD Anderson telling us that our oncologist here had called to set up an appointment for us. They had scheduled it for Tuesday. Rickie told them we would get back to them and thought he wanted to reschedule it for the following week. I am thinking he wants to put it off so when we go we can have them do the repeat stretch there. How is Lee doing weight wise? Has he kept it on using just the feeding tube? Rickie seems to have stabilized between 132 and 139. Can't seem to get it up higher than that. Of course he doesn't want to use the tube except if it is really necessary. He says he feels too full when he takes a can. I have tried to get him to have one late in the evenings, but he would rather have a bowl of ice cream, and I can't say that I blame him, I would too!
    Hope all is well with you both,
    Cheryl
  • Daisylin
    Daisylin Member Posts: 365
    #17
    cher76 said:

    Thanks, Chantal.
    I have
    Thanks, Chantal.
    I have been thinking of you two also. How is Lee doing with his stretch? Has he attempted to eat anything at all? Rickie stayed on liquids the first day, then at soft foods the next and yesterday branched out to some little more solid foods yesterday. So far so good. He so wants to eat, just knows that he has to watch it. Last time when he had the bleeding, I think he rushed it and did not allow it to heal enough before he started eating solid foods. That happened on the third day after the stretch, so I think maybe we are in the clear now. He got a call from MD Anderson telling us that our oncologist here had called to set up an appointment for us. They had scheduled it for Tuesday. Rickie told them we would get back to them and thought he wanted to reschedule it for the following week. I am thinking he wants to put it off so when we go we can have them do the repeat stretch there. How is Lee doing weight wise? Has he kept it on using just the feeding tube? Rickie seems to have stabilized between 132 and 139. Can't seem to get it up higher than that. Of course he doesn't want to use the tube except if it is really necessary. He says he feels too full when he takes a can. I have tried to get him to have one late in the evenings, but he would rather have a bowl of ice cream, and I can't say that I blame him, I would too!
    Hope all is well with you both,
    Cheryl

    Hi Cheryl,
    So glad to hear that Rickie is eating 'solid' foods. I can't say I blame him for preferring ice cream, I would too!!

    Lee has still not ventured to try eating anything. I asked him this morning, and he said he just has no desire to eat. At this point he has not eaten in over a month. He has been drinking water, juice and finally he had his Pepsi!!! Fortunately he is maintaining his weight at around 190. Since he has the GJ tube, he's never 'full', but never hungry either. The only thing he does not like about it is that it takes over 12 hours to go through the bottle. (He's on Jevity 1.5, and it comes in a single bottle.) Some days, when he has appointments during the day, he falls behind on his feedings. There just never seems to be enough hours in the day to get the whole bottle done. Overall, it's been a total lifesaver for him!!

    I don't know if what Rickie has is the same type as Lee's, but we were told that it was easily converted to a G tube if we wanted. Perhaps you could switch to a GJ, and do some additional slow feeding at night. (then he wouldn't feel that fullness that he feels with the cans and G tube)

    I know you've had bleeding issues a few times during the stretches, and that must be so scary. We were told, when Lee had his, that she had a really hard time getting the wire in, he was so closed up. She warned that he would probably need to be stretched every 2 weeks, but was afraid that she's perforate his esophagus and he would face the real risk of bleeding out. She very strongly recommended having a stent put in. We are still researching the pros and cons. There seems to be so many reasons not to get one done, but if the alternative is having risk of a bleed out every 2 weeks, the stent seems like a better choice for us.

    Hope the next stretch goes better for you both! I know you don't have the same holiday as us, but today is our Thanksgiving, so have an extra good day, and don't forget to remind yourself of all the things you have to be thankful for!
    Take care,
    Chantal
  • chemosmoker
    chemosmoker Member Posts: 501
    #18
    Daisylin said:

    Hi Cheryl,
    So glad to hear that Rickie is eating 'solid' foods. I can't say I blame him for preferring ice cream, I would too!!

    Lee has still not ventured to try eating anything. I asked him this morning, and he said he just has no desire to eat. At this point he has not eaten in over a month. He has been drinking water, juice and finally he had his Pepsi!!! Fortunately he is maintaining his weight at around 190. Since he has the GJ tube, he's never 'full', but never hungry either. The only thing he does not like about it is that it takes over 12 hours to go through the bottle. (He's on Jevity 1.5, and it comes in a single bottle.) Some days, when he has appointments during the day, he falls behind on his feedings. There just never seems to be enough hours in the day to get the whole bottle done. Overall, it's been a total lifesaver for him!!

    I don't know if what Rickie has is the same type as Lee's, but we were told that it was easily converted to a G tube if we wanted. Perhaps you could switch to a GJ, and do some additional slow feeding at night. (then he wouldn't feel that fullness that he feels with the cans and G tube)

    I know you've had bleeding issues a few times during the stretches, and that must be so scary. We were told, when Lee had his, that she had a really hard time getting the wire in, he was so closed up. She warned that he would probably need to be stretched every 2 weeks, but was afraid that she's perforate his esophagus and he would face the real risk of bleeding out. She very strongly recommended having a stent put in. We are still researching the pros and cons. There seems to be so many reasons not to get one done, but if the alternative is having risk of a bleed out every 2 weeks, the stent seems like a better choice for us.

    Hope the next stretch goes better for you both! I know you don't have the same holiday as us, but today is our Thanksgiving, so have an extra good day, and don't forget to remind yourself of all the things you have to be thankful for!
    Take care,
    Chantal

    Good news about stretches
    Cheryl, Rickie, Lee and Chantal,

    I am SO glad that both of them are doing okay since their stretches. I am glad the bleeding has stopped for Rickie and that Lee has had none as of yet.

    I am overjoyed to hear about Lee finally having his Pepsi! What a nice thing to read this morning. Hope the effects last longer than the two weeks given. I do wish he would TRY to eat, as I feel THAT is what is keeping my esophagus open in the first place. I force it to 'work' and stay flexible, and was told it could 'harden up' if I didn't try to eat. I don't have to try; I LOVE food and flavor. I couldn't imagine giving up the tastes.
    That's me.

    Wishing you both a happy Canadian Thanksgiving today!

    Sending love, hugs and prayers to all of you.

    -Eric
  • TerryV
    TerryV Member Posts: 887
    #19
    Daisylin said:

    Hi Cheryl,
    So glad to hear that Rickie is eating 'solid' foods. I can't say I blame him for preferring ice cream, I would too!!

    Lee has still not ventured to try eating anything. I asked him this morning, and he said he just has no desire to eat. At this point he has not eaten in over a month. He has been drinking water, juice and finally he had his Pepsi!!! Fortunately he is maintaining his weight at around 190. Since he has the GJ tube, he's never 'full', but never hungry either. The only thing he does not like about it is that it takes over 12 hours to go through the bottle. (He's on Jevity 1.5, and it comes in a single bottle.) Some days, when he has appointments during the day, he falls behind on his feedings. There just never seems to be enough hours in the day to get the whole bottle done. Overall, it's been a total lifesaver for him!!

    I don't know if what Rickie has is the same type as Lee's, but we were told that it was easily converted to a G tube if we wanted. Perhaps you could switch to a GJ, and do some additional slow feeding at night. (then he wouldn't feel that fullness that he feels with the cans and G tube)

    I know you've had bleeding issues a few times during the stretches, and that must be so scary. We were told, when Lee had his, that she had a really hard time getting the wire in, he was so closed up. She warned that he would probably need to be stretched every 2 weeks, but was afraid that she's perforate his esophagus and he would face the real risk of bleeding out. She very strongly recommended having a stent put in. We are still researching the pros and cons. There seems to be so many reasons not to get one done, but if the alternative is having risk of a bleed out every 2 weeks, the stent seems like a better choice for us.

    Hope the next stretch goes better for you both! I know you don't have the same holiday as us, but today is our Thanksgiving, so have an extra good day, and don't forget to remind yourself of all the things you have to be thankful for!
    Take care,
    Chantal

    Woo Hoo! PEPSI
    I have zero input for you on stents or stretches, Chantal. Don't know a thing about either of them. Just wanted to send Lee a

    !WOOT! !WOOT! for his chance at an icy cold Pepsi :)

    Glad he was able to have one.

    Hugs & love to you both! Hope you have an enjoyable Thanksgiving with your family & friends.

    Terry
  • json_2011
    json_2011 Member Posts: 100
    #20
    Prayers with the next step
    Hello Cheryl , I hope and will say a prayer right now for you and Rickie. We hope that the next step is thougt out and that it will work out.


    Jason

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