Update

LauraandLarry
LauraandLarry Member Posts: 184
in Esophageal Cancer #1

I have been absent for awhile. I have been reading all of your posts and still praying for each and everyone of you. Larry is up and down. Like I have said before...something is just not right. 188 at surgery, now 135. He looks awful. Yesterday was 4 months post surgery. He has blood in his urine, and now is suffering with a terrible backache. His memory is horrible. He has many many Dr appointments, but cancels about half. I try to let him be in control, however he can not handle it. He forgets, or ignores. He does not seem depressed. Hopefully they will have answers soon. We know he does not have urinary infection or kidney stones.

How is everyone? I have been on the FB page quite a bit. It has been very difficult getting on this site.

Comments

  • luby
    luby Member Posts: 6
    #2
    Glad to see you

    I've been missing your comments and am glad to see you're back.  Very sorry to hear of your struggles.  I wish you the best and hope you get some answers soon.

     

  • jcarol
    jcarol Member Posts: 30
    #3
    Sorry it's so tough

    It's worrisome to know that Larry is struggling so much. Is he still seeing U of M docs for follow-up so that his care is coordinated?

    Clint will be facing the same surgery at the end of September.  Right now he is doing well with the chemo/rad program (less tough than Larry's I think).  He's taking some steriods for three days after every treatment and has had few side effects.  However, today his white blood count was 1.7 and he could not have the chemo.  Also, Clint is being quite compliant in terms of walking 3 miles daily, eating well and using the spirometer.  He met with a vascular surgeon last week re: his AAA and they will check it again before surgery but think he will be ok to go.  

    A very unhappy sidenote to Clint's diagnosis is that I was diagnosed with IDC breast cancer a few weeks ago.  I had a lumpectomy (covering three suspicious sites and both a sentinel node and nipple biopsy last Thursday at U of M.  The good news is that my nodes are clear but I am waiting for the path report and have no idea if I will need more than radiation and hormone therapy.  Could still require mastectomy and/or chemo.  I just don't know if I can cope with being down and out at the time Clint must have his surgery.  We are really trying to stay positive and active but there is a lot of anxiety.

    Please let Larry know that we need him to take good care of himself and we follow his path.  

    Keep in touch.

    Joan

  • callerid
    callerid Member Posts: 96
    #4
    Sorry

    Sorry to hear things haven't improved.  I wish I could help but my husband didn't have the surgery so we haven't been through what you have. 'Hopefully the doctors will find some solution. So glad to hear from you. Will keep you in my thoughts and prayers.

  • WifeOfSurvivor2Be
    WifeOfSurvivor2Be Member Posts: 21
    #5
    Was a little worried

    Laura, 

     

    I follow your posts as I know somewhat what you are going through.  I was a little worried when I hadn't seen any posts.  My husband struggle so much after surgery.  He had his Dec 11, 2012 and didn't leave the hospital until Jan 19th, 2013.  Respiratory failure 3 times, leak, 3 repairs to the leak, 4 bouts of pnuemonia, 1 flu and he was exposed to turburcleous in the hospital.  He had a trache tube until the beginning of May and return to work last week of May.  He wasn't as stubborn as Larry but it was hard on our marriage.

    He still has elivated enzyme levels in the liver but they are slowly coming down and the specialist released him with just some follow up blood work.  

    Fast forward.  Last weekend we went on a 35 mile bike ride with tons of large hills.  It was a very challenging ride and he made the whole thing.  Much better than I did and with much less complaining.  He is gaining weight but that is pretty slow.  Still learning with the eating.  

    Since there is clearly something wrong with Larry yet, I can't say it will get better....I simply want to give you hope that it will.

    This is a long, terrible road.  It is the worst test I ever had to take.  I pray for everyone having to face this and much worse.  This site can be so sad sometimes......I am glad I have something positive to post today!

    Prayers for a better tomorrow!

    Amy

  • eternalife
    eternalife Member Posts: 36
    #6
    WifeOfSurvivor2Be said:

    Was a little worried

    Laura, 

     

    I follow your posts as I know somewhat what you are going through.  I was a little worried when I hadn't seen any posts.  My husband struggle so much after surgery.  He had his Dec 11, 2012 and didn't leave the hospital until Jan 19th, 2013.  Respiratory failure 3 times, leak, 3 repairs to the leak, 4 bouts of pnuemonia, 1 flu and he was exposed to turburcleous in the hospital.  He had a trache tube until the beginning of May and return to work last week of May.  He wasn't as stubborn as Larry but it was hard on our marriage.

    He still has elivated enzyme levels in the liver but they are slowly coming down and the specialist released him with just some follow up blood work.  

    Fast forward.  Last weekend we went on a 35 mile bike ride with tons of large hills.  It was a very challenging ride and he made the whole thing.  Much better than I did and with much less complaining.  He is gaining weight but that is pretty slow.  Still learning with the eating.  

    Since there is clearly something wrong with Larry yet, I can't say it will get better....I simply want to give you hope that it will.

    This is a long, terrible road.  It is the worst test I ever had to take.  I pray for everyone having to face this and much worse.  This site can be so sad sometimes......I am glad I have something positive to post today!

    Prayers for a better tomorrow!

    Amy

    Final days are near

    Hello all,

    I have not been on this site for a while, I have just read the posts on this thread today, my husband diagnosed with stage iv Ec, Dec. 2011 is in the end stages, He showed  nodules in his lungs and tumours in his livers. He is quite jaundiced, tired and just not able to get out of bed, wanting to nap most of the day.. the body's way of shutting down. His weight has dropped dramatically and he has no appetite.

    It is all so very sad, I was to meet with a girffriend for lunch today, we booked more than a month ago, but since Mark's condition is so grave will cancel that, caregiving is so tough and very unpredictable.

    Praying for all on this roller coaster ride that seems to have so many bumps along the way,

    Best

  • Dad'sfight
    Dad'sfight Member Posts: 155
    #7
    eternalife said:

    Final days are near

    Hello all,

    I have not been on this site for a while, I have just read the posts on this thread today, my husband diagnosed with stage iv Ec, Dec. 2011 is in the end stages, He showed  nodules in his lungs and tumours in his livers. He is quite jaundiced, tired and just not able to get out of bed, wanting to nap most of the day.. the body's way of shutting down. His weight has dropped dramatically and he has no appetite.

    It is all so very sad, I was to meet with a girffriend for lunch today, we booked more than a month ago, but since Mark's condition is so grave will cancel that, caregiving is so tough and very unpredictable.

    Praying for all on this roller coaster ride that seems to have so many bumps along the way,

    Best

    Eternalife, I'm so sorry to

    Eternalife, I'm so sorry to hear this. I don't know what to say besides that I will keep you guys in my prayers. I had posted a question to you on the board but I had no idea he was so sick.  I thought the last I read he was doing alright, so I'm just in shock.  My heart goes out to you guys. Once again, I'm so so sorry.

  • Dad'sfight
    Dad'sfight Member Posts: 155
    #8
    Laura, I'm stalking you on

    Laura, I'm stalking you on all different kind of sites-LOL  I'm at work and this is the only site the internet will allow.  1st, I'm worried sick about Larry, this post doesn't sound great. The way you describe Larry is slight possible signs of depression.  Dad has been really fighting us on doctors apt's, wanting to cancel the majority of them expcept if there the oncologists. I talked to his PCP about it and she said that was sign of depression. My father has become very forgetful, although very possible by choice-LOL, joking aside he is forgetting a lot. The PCP said that when someone is depressed but consumed with anxiety on top of it, it just makes them forget things and choose to ignore. With that being said, dad has been on depression medication since the dx in 9/2012, haven't noticed a change really but it's probably helping. 

    **I came across this blog on the internet. I know now is not a good time for anything, this was just the 1st of seen of this and wanted to get the info to you.

    It took me over 2 years to get up the courage to have anything done and the ENT did the injection first.  It worked for about 9 months, but then my voice got squeeky again and the old problems came back, including trouble swallowing.  It was then the ENT surgeon suggested having a permanent silicone wedge implanted in the paralyzed vocal chord.  I had the proceedure done and that was about 3 years ago I think.  Anyhow, I got my voice back.  I still get some problems with projecting my voice when I am very tired and I still cough a little.  Usually the cough is because I have overeaten or my throat gets dry.  My family doctor said that acid reflux would cause coughing, but I don't seem to be having any acid problems right now.  The last time I aspirated was November 2010.  My fault.....ate too late and slept too flat.hoo, I also found this info on cancer compass regarding vocal chord. I know now is not a good time for anything, but I came across it and wanted you to know about it.

  • callerid
    callerid Member Posts: 96
    #9
    eternalife said:

    Final days are near

    Hello all,

    I have not been on this site for a while, I have just read the posts on this thread today, my husband diagnosed with stage iv Ec, Dec. 2011 is in the end stages, He showed  nodules in his lungs and tumours in his livers. He is quite jaundiced, tired and just not able to get out of bed, wanting to nap most of the day.. the body's way of shutting down. His weight has dropped dramatically and he has no appetite.

    It is all so very sad, I was to meet with a girffriend for lunch today, we booked more than a month ago, but since Mark's condition is so grave will cancel that, caregiving is so tough and very unpredictable.

    Praying for all on this roller coaster ride that seems to have so many bumps along the way,

    Best

    Eternal Life

    I am so sorry. We have chatted about the similarities in our husband's cases but I had no idea he was that ill. Have you considered getting hospice? Christine posted a message about her experience.  It details how hospice has been for her and Mike. Very enlightening. Not at all what I had believed it to be.

    You need to maintain your connections .... perhaps you can reschedule with your friend and lean on her for a time.  May God provide you with strength today and in upcoming days.

    If you need to chat send me an e-mail

  • LauraandLarry
    LauraandLarry Member Posts: 184
    #10
    luby said:

    Glad to see you

    I've been missing your comments and am glad to see you're back.  Very sorry to hear of your struggles.  I wish you the best and hope you get some answers soon.

     

    thank you

    Trying to get back here more often. Really missing everyone as well. I hope all is well with you.

  • LauraandLarry
    LauraandLarry Member Posts: 184
    #11
    jcarol said:

    Sorry it's so tough

    It's worrisome to know that Larry is struggling so much. Is he still seeing U of M docs for follow-up so that his care is coordinated?

    Clint will be facing the same surgery at the end of September.  Right now he is doing well with the chemo/rad program (less tough than Larry's I think).  He's taking some steriods for three days after every treatment and has had few side effects.  However, today his white blood count was 1.7 and he could not have the chemo.  Also, Clint is being quite compliant in terms of walking 3 miles daily, eating well and using the spirometer.  He met with a vascular surgeon last week re: his AAA and they will check it again before surgery but think he will be ok to go.  

    A very unhappy sidenote to Clint's diagnosis is that I was diagnosed with IDC breast cancer a few weeks ago.  I had a lumpectomy (covering three suspicious sites and both a sentinel node and nipple biopsy last Thursday at U of M.  The good news is that my nodes are clear but I am waiting for the path report and have no idea if I will need more than radiation and hormone therapy.  Could still require mastectomy and/or chemo.  I just don't know if I can cope with being down and out at the time Clint must have his surgery.  We are really trying to stay positive and active but there is a lot of anxiety.

    Please let Larry know that we need him to take good care of himself and we follow his path.  

    Keep in touch.

    Joan

    Joan and Clint,

    I think about you often and have been wondering how Clint is doing with treatments. The treatment effects are usually cumulative, therefore eat, eat, eat! I hope Cllint fares well throughout. I truly believe that the majority of Larry's problems are related to his stubborness. At least I am hoping so. He is looking well, except just so thin. During chemo Larry walked and exercised everyday. He is a jock at heart so that part was easy for him. He really misses playing hockey. Maybe next spring he will be able to return to the ice.

    I am so sorry for recent diagnosis. Please try to stay positive. Are you going to U of M as well? If so I'm sure they will help you figure this nightmare out. You have to both take care of yourselves. I wish you both the best.

  • LauraandLarry
    LauraandLarry Member Posts: 184
    #12
    WifeOfSurvivor2Be said:

    Was a little worried

    Laura, 

     

    I follow your posts as I know somewhat what you are going through.  I was a little worried when I hadn't seen any posts.  My husband struggle so much after surgery.  He had his Dec 11, 2012 and didn't leave the hospital until Jan 19th, 2013.  Respiratory failure 3 times, leak, 3 repairs to the leak, 4 bouts of pnuemonia, 1 flu and he was exposed to turburcleous in the hospital.  He had a trache tube until the beginning of May and return to work last week of May.  He wasn't as stubborn as Larry but it was hard on our marriage.

    He still has elivated enzyme levels in the liver but they are slowly coming down and the specialist released him with just some follow up blood work.  

    Fast forward.  Last weekend we went on a 35 mile bike ride with tons of large hills.  It was a very challenging ride and he made the whole thing.  Much better than I did and with much less complaining.  He is gaining weight but that is pretty slow.  Still learning with the eating.  

    Since there is clearly something wrong with Larry yet, I can't say it will get better....I simply want to give you hope that it will.

    This is a long, terrible road.  It is the worst test I ever had to take.  I pray for everyone having to face this and much worse.  This site can be so sad sometimes......I am glad I have something positive to post today!

    Prayers for a better tomorrow!

    Amy

    So happy

    I am so pleased that your husband was able to make the bike ride. It must have made the both of you feel so good! Yes, I agree this is the worst road I have traveled. Prayers and more prayers!

  • LauraandLarry
    LauraandLarry Member Posts: 184
    #13
    Dad'sfight said:

    Laura, I'm stalking you on

    Laura, I'm stalking you on all different kind of sites-LOL  I'm at work and this is the only site the internet will allow.  1st, I'm worried sick about Larry, this post doesn't sound great. The way you describe Larry is slight possible signs of depression.  Dad has been really fighting us on doctors apt's, wanting to cancel the majority of them expcept if there the oncologists. I talked to his PCP about it and she said that was sign of depression. My father has become very forgetful, although very possible by choice-LOL, joking aside he is forgetting a lot. The PCP said that when someone is depressed but consumed with anxiety on top of it, it just makes them forget things and choose to ignore. With that being said, dad has been on depression medication since the dx in 9/2012, haven't noticed a change really but it's probably helping. 

    **I came across this blog on the internet. I know now is not a good time for anything, this was just the 1st of seen of this and wanted to get the info to you.

    It took me over 2 years to get up the courage to have anything done and the ENT did the injection first.  It worked for about 9 months, but then my voice got squeeky again and the old problems came back, including trouble swallowing.  It was then the ENT surgeon suggested having a permanent silicone wedge implanted in the paralyzed vocal chord.  I had the proceedure done and that was about 3 years ago I think.  Anyhow, I got my voice back.  I still get some problems with projecting my voice when I am very tired and I still cough a little.  Usually the cough is because I have overeaten or my throat gets dry.  My family doctor said that acid reflux would cause coughing, but I don't seem to be having any acid problems right now.  The last time I aspirated was November 2010.  My fault.....ate too late and slept too flat.hoo, I also found this info on cancer compass regarding vocal chord. I know now is not a good time for anything, but I came across it and wanted you to know about it.

    Tina

    Hi Tina, I hope you are ok.... I know you are dealing with alot right now. Thank you so much for all the info. You have so much on your plate and you are still digging for info for others. All of Larry's tests have have shown that his vocal chords are working fine. It is quite puzzling to me. Tests, tests, and more tests.

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