Jerry's January 2013 update

jgwright
jgwright Member Posts: 242

well, here I am.  Falling apart, but chugging along.  Sadly, I had to stop working in November, when the Doctor installed my esophageal stent which made me the sickest I've ever been.  So now I'm on hospice, and looking for some sort of possible treatments now that the regular doctors have given up.

I'm now under 200 pounds, which I haven't been since a teenager. 

--Jerry

Comments

  • Amjosmom
    Amjosmom Member Posts: 212
    Hello, Jerry
    Sorry to hear the negative news. What kind of treatments are you looking for? Are you eating at all? Are you still active, or feeling too blah to get out and about? Glad you're not giving in yet!! My Dad is doing lots of complimentary stuff. Would it be useful to you? Let me know on fb.

    Take care, Jerry! You're in my thoughts and prayers.
  • paul61
    paul61 Member Posts: 1,391 Member
    Thanks for the update Jerry

    It is good to hear from you Jerry, although I wish the news were better. We have heard so much negative feedback about stents. It seems very few people have good results from them. But when you are struggling to eat, and your doctor suggests it as the best option for you, what are you going to do? I hope hospice is providing some support and relief and improving your quality of life.

     You are in my prayers daily.

     Best Regards,

     Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB

    Ivor Lewis Surgery  12/3/2009

    Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU

  • MartinG5602
    MartinG5602 Member Posts: 22
    Thinking of you

    Hi Jerry,

    We have thought of you so many times and are so glad you are back to give us an update.   My husband , Martin, DX in Feb 11 as a Stage III B, had chemo, proton radiation, and the IL at MD Anderson in Houston in Sept of '11. He was released on the fourth day!  He was clear for 6 months, then a Met to the Adrenal Gland returned, making him Stage IV in March of 2012 and another round of chemo and radiation followed but had no effect on the Adrenal tumor. 10 months have now passed and we return to Anderson today for follow up testing.  If things remain the same with no new Mets, his Adrenal Gland will be removed on the 14 th. I am anxious but Martin is calm, practical, and does not worry. He lost his mother and brother to cancer a few years ago. His mother did not like the treatments , quit them, then lived another 25 years, dying at 95.  His brother, 60, had pancreatic and only lived 6 months. Go figure!  Martin believes he has done his very best to to fight EC but simply says, God will take me when He is ready. He has taught me alot about being brave, and  "steady in the buggy" as Nixon used to say, and accepting.

    Martin lost 70 lbs after the IL, but changed his diet to fruits , nuts, additional CLEAR Ensure " this is good!" , fish, and lots of veggies, plus 2 glasses of red wine daily. He did weigh 240, but has maintain 170 to 174 for 15 months.  He takes vitamins, makes smoothies, drinks no other alcohol, exercises, and has put in a new winter garden, travels alot, goes to Lowes and the grocery store almost hourly, enjoys old movies, and our 6 grandchildren.  His former  voracious appetite returned some months back.  He is 75.  He also goes to church and lights candles for his many other cancer friends. I will light one for you too today!

    Please keep us in your thoughts for good tests reports this week for Martin.   I need your support!  Do not hesitate to contact us.....as you have MANY friends on this board who like you very much! We live in Dallas, Tx.  Martin is from Louisiana and I am from Arkansas.  We returned yesterday from a week of fishing and shelling in Naples, fl., and a week visiting one son whose wife is serving at Fort Benning in Georgia as a doctor, preparing to go to for a year in September following the birth of her second child due in March. Time will pass..all will be OK!  

     

    Barrie 

     

     

     

     

  • birdiequeen
    birdiequeen Member Posts: 319
    Hello Jerry

    It is good to hear from you even if the new is not good.  Sorry to hear you had to stop teaching.  I remember you saying how much you enjoyed teaching.  So many have said such good things about hospice, I hope they are giving you the care and respect you deserve and are able to make you comfortable although the stent did not. 

    I'm so disappointed we have lost so many from this board (thru banning) as I know Sherri whould be telling you hospice is not giving up.   

    Take care and keep intouch when you can

    Lee Ann

  • sandy1943
    sandy1943 Member Posts: 824
    Hello Jerry, so good to hear

    Hello Jerry, so good to hear from you. This is a sign that maybe you are feeling a little better. I wonder if the stent has ever been good for anyone, it doesn't seem like it. Praying hospice will provide you with a better quality of life.

    You are always in my thoughts and prayers,

    Sandra

  • TerryV
    TerryV Member Posts: 887
    Glad you are still fighting against the beast!

    Jerry,

    I have wondered often how you were doing.  Like the others, I'm saddened to hear that your students no longer have you as a teacher.  It's hard to see a passionate teacher step aside.

    I'm glad that you have enlisted hospice.  They are such a wonderful and caring resource.  I hope you are finding that to be true for you!

    Please know that you are in our prayers for comfort, peace and miracles.

    Terry
    PROUD wife to Nick, age 49
    lost battle to FEC, June 19, 2012

  • TerryV
    TerryV Member Posts: 887
    Duplicate

    new forum software - same old issue

  • AngieD
    AngieD Member Posts: 493
    TerryV said:

    Duplicate

    new forum software - same old issue

    It is good to hear from

    It is good to hear from you,Jerry, even tho I hate it that the news is not better.  We've heard such wonderful things about Hospice here ever since we both joined this group.  I hope you find that to be true.  You are one feisty guy and I can see you enjoying the comforts that Hospice can provide while still pursuing some non-conventional treatment options.   Good luck And keep us posted!

    Angie

  • rose20
    rose20 Member Posts: 258
    Hi Jerry

    I'm so sorry for all you are going through.

     

    I can't say enough bad things about 'the stent.' But that is my opinion.

     

    I hated that thing in my brother, but like Paul said when you are told it will help you eat, like they told Jr. it would keep his esophagus opened but failed to tell him how in time the tumor could grow all in it.

     

    I HATE this cancer!!!!!!!!!!!!

    Well I hate all cancers!!!!!

    All I know to say is I am praying. Only God knows what lies ahead and I just pray that you have better quality of life with hospice now involved, but I know your true help comes from the Lord.

    Thank you for taking the time to let us all know that you are still here, and we are so thankful for that.

    Prayers for all!!

    rose

  • ray slone
    ray slone Member Posts: 25
    sorry to hear you are not

    sorry to hear you are not doing good jerry.  i have about the same things going on as you do. my esophagus is open enough for me to eat. i do have bone mets and now some musle mets in my back.  i was on folfox chemo and now they are trying some other chemo.   i am also trying some eastern medicine as well   i take black rasaberry pills every day and i also take b-17 from aproicot pits. the docs dont think it does any good, but i think it helps. maybe it could help you. take care jerry    ray

  • jgwright
    jgwright Member Posts: 242
    ray slone said:

    sorry to hear you are not

    sorry to hear you are not doing good jerry.  i have about the same things going on as you do. my esophagus is open enough for me to eat. i do have bone mets and now some musle mets in my back.  i was on folfox chemo and now they are trying some other chemo.   i am also trying some eastern medicine as well   i take black rasaberry pills every day and i also take b-17 from aproicot pits. the docs dont think it does any good, but i think it helps. maybe it could help you. take care jerry    ray

    Staying focussed

    Well, the biggest problem I have with the stent is that it SOOOOOO easily gets clogged.  I've been fortunate in that I discovered that if the clog isn't TOOO bad I can foam it out with Coke.  Also the Coke helps keep the stent clean.  I've had it clog maybe 9 or 10 times, but only needed to visit the hospital twice to be roto-rootered, as my wife says.

    Hospice?  They are GREAT.  And my meds are now free and even though we are in a new year, I don't have to worry about the co-pay or anything else from a monetary standpoint.  Hospice is billing Medicare, not my insurance.  Very cool.  The nurse comes out twice a week, and we work very well to keep my pain under great control.

    I also discovered that ibuprofen and oxycodone work extremely well together, and that morphine turns me into a zombie.  And I hate it.  However, it's there if I need it.

    Well my love to you all, and as the Bible says, "Keep on persevering in prayer,"

    ==Jerry

  • Amjosmom
    Amjosmom Member Posts: 212
    jgwright said:

    Staying focussed

    Well, the biggest problem I have with the stent is that it SOOOOOO easily gets clogged.  I've been fortunate in that I discovered that if the clog isn't TOOO bad I can foam it out with Coke.  Also the Coke helps keep the stent clean.  I've had it clog maybe 9 or 10 times, but only needed to visit the hospital twice to be roto-rootered, as my wife says.

    Hospice?  They are GREAT.  And my meds are now free and even though we are in a new year, I don't have to worry about the co-pay or anything else from a monetary standpoint.  Hospice is billing Medicare, not my insurance.  Very cool.  The nurse comes out twice a week, and we work very well to keep my pain under great control.

    I also discovered that ibuprofen and oxycodone work extremely well together, and that morphine turns me into a zombie.  And I hate it.  However, it's there if I need it.

    Well my love to you all, and as the Bible says, "Keep on persevering in prayer,"

    ==Jerry

    Oh, Jerry...
    You are always in my thoughts and prayers. You have been an inspiration with your never-give-in attitude. I'm glad to hear you've figured out how to manage with the stent. Any info that can be shared to help others is greatly appreciated! You keep hanging in there!!

    Jayme
  • oriontj
    oriontj Member Posts: 375
    Amjosmom said:

    Oh, Jerry...
    You are always in my thoughts and prayers. You have been an inspiration with your never-give-in attitude. I'm glad to hear you've figured out how to manage with the stent. Any info that can be shared to help others is greatly appreciated! You keep hanging in there!!

    Jayme

    Our onc talked stent

    My husband wanted to do it. Sure it would help him eat. He looked at me and for the only time during the three and half years he had ec he listened to me when I nodded no. It would of been just one more procedure to wear him out.

     

    jan

  • Kriss40old
    Kriss40old Member Posts: 1
    A throat biopsy who to talk to or what to say ??????

    Hi I'm not sure who I'm sending this to or who is going to veiw it but I need to say something about what's going on with myself  ,I don't even know if anyone one will see it ,,well my name is Kriss and I'm not the kind of fella that's good at pen to paper and having a chat about this stuff,,,,

    anyway whoever,,, 

    where to begin. Well I started of with a sore throat about 6mnths ago and became worse with the hoarseness well a little time after my tongue started showing up different colours which my wife thought was thrush of the mouth anyway the quack put me on amoxicillin and I completed the course. ,

    well this went on for a couple of months and it never went away and I just got on with it as that's what blokes do ' they just get on with it' .

    so now 5 months have passed and insisted literally dragged me up the quacks office and they made me a appointment at the hospital,,after seeing throat  mouth specialist he had a look inside the old trap and decided to to have a more poke about with a telescope  right up the hooter. Now over 20years I have put some crap up my nose so this was  a new one ,,he he ,,,,

    well he had a gander at the old vocale and found some swelling there on the box he said. And further investigations was required. ,,criest I thought I got Sherlock bloody Holmes here  what's he think thiscenes crime scene.?

    so this was on a Monday. come Tuesday the old blower goes and it's the hospital to book me in on a Friday for a poke about again so I agree as its best to keep her indoors happy as I want to go out the weekend for a few jars,,so now here iam in the hospital a place that only exists to me in dyer emergencys.If ever. 

    So here iam on the bed misis sitting to one side and the doc walks in and tells me that if they don't find anything they will not take any of my tissue away. ,,yeah I'm thinking that's cool, now 2hours later I'm living on a bed with wheels getting pushed down a corridor towards a bright room with half a dozen people in  nurses everywhere and thers me on a bed with nothing on except a gown.

    Now the old ticker is starting to beat a little bit faster now,,whether its the 4 nurses fiddling about around my bed putting wires on me. .? Or it's the thought I'm getting put to sleep  by an injection. ,,I try and amuse myself and crack a joke to the specialist. That came to see me and stay to him accuse me doc.  If ya find any money down there let me know and ill split it with ya ,,I got a couple of chuckles out the zombies but not much to shout about.

    so now I'm out cold woke up 1 hour 10 min later to someone calling my name ,,I came round pretty quick as I want to be with it ,,literally a few min go by and iam able to talk  and ask the doctor if he found any dollar down the old tunnel so sorry he replies not a penny. ,,lying git I quickly pipe up ya bloody stole it aint ya,,,ha ha ha the nurses go.  Now that's promising I'm thinking I got a laugh this time so maybe all aint to bad.

    so now I'm back in my corner with the wife concerned as she is bless her waiting for someone to let me know when I can go home as I'm not the best. Patient one can be,

     

    well an hour an half flies by and I'm now changed into my clobber and still waiting to go.... I'm felling fine and just want to go when  the curtain opens up and the quack. Pops in and tells me that unfortantly he found white paches on both vocale chords and they are very badly swollen,, he had to take 3 samples and is going to rush through the results as he's concernend. Ok I go   What's that mean ,,well I have to go back for the results in a week or so,,ok I go so I leave,

    well I'm now thinking what's going on my wife in in the medicale industry and is telling me I need to prepare myself for some harsh results. ,,now what the hell am I supposed to think,, does anyone any idea what they think and if it is cancer after a sore throat and this going on for seven months what they reacon on ,,,I'm not sure how I'm supposed to fill yet I mean should I worry shouldn't I worry  I just don't know,,all I know is I have smoked 3 cig gis as I've wrote this and seem to be smoking more as the week where's on,,

     

    well that's about it really I don't even know if there's anyone out there that will see this  but I bet it makes good reading,,by for now world,,,krissi from London england

     

  • Amjosmom
    Amjosmom Member Posts: 212

    A throat biopsy who to talk to or what to say ??????

    Hi I'm not sure who I'm sending this to or who is going to veiw it but I need to say something about what's going on with myself  ,I don't even know if anyone one will see it ,,well my name is Kriss and I'm not the kind of fella that's good at pen to paper and having a chat about this stuff,,,,

    anyway whoever,,, 

    where to begin. Well I started of with a sore throat about 6mnths ago and became worse with the hoarseness well a little time after my tongue started showing up different colours which my wife thought was thrush of the mouth anyway the quack put me on amoxicillin and I completed the course. ,

    well this went on for a couple of months and it never went away and I just got on with it as that's what blokes do ' they just get on with it' .

    so now 5 months have passed and insisted literally dragged me up the quacks office and they made me a appointment at the hospital,,after seeing throat  mouth specialist he had a look inside the old trap and decided to to have a more poke about with a telescope  right up the hooter. Now over 20years I have put some crap up my nose so this was  a new one ,,he he ,,,,

    well he had a gander at the old vocale and found some swelling there on the box he said. And further investigations was required. ,,criest I thought I got Sherlock bloody Holmes here  what's he think thiscenes crime scene.?

    so this was on a Monday. come Tuesday the old blower goes and it's the hospital to book me in on a Friday for a poke about again so I agree as its best to keep her indoors happy as I want to go out the weekend for a few jars,,so now here iam in the hospital a place that only exists to me in dyer emergencys.If ever. 

    So here iam on the bed misis sitting to one side and the doc walks in and tells me that if they don't find anything they will not take any of my tissue away. ,,yeah I'm thinking that's cool, now 2hours later I'm living on a bed with wheels getting pushed down a corridor towards a bright room with half a dozen people in  nurses everywhere and thers me on a bed with nothing on except a gown.

    Now the old ticker is starting to beat a little bit faster now,,whether its the 4 nurses fiddling about around my bed putting wires on me. .? Or it's the thought I'm getting put to sleep  by an injection. ,,I try and amuse myself and crack a joke to the specialist. That came to see me and stay to him accuse me doc.  If ya find any money down there let me know and ill split it with ya ,,I got a couple of chuckles out the zombies but not much to shout about.

    so now I'm out cold woke up 1 hour 10 min later to someone calling my name ,,I came round pretty quick as I want to be with it ,,literally a few min go by and iam able to talk  and ask the doctor if he found any dollar down the old tunnel so sorry he replies not a penny. ,,lying git I quickly pipe up ya bloody stole it aint ya,,,ha ha ha the nurses go.  Now that's promising I'm thinking I got a laugh this time so maybe all aint to bad.

    so now I'm back in my corner with the wife concerned as she is bless her waiting for someone to let me know when I can go home as I'm not the best. Patient one can be,

     

    well an hour an half flies by and I'm now changed into my clobber and still waiting to go.... I'm felling fine and just want to go when  the curtain opens up and the quack. Pops in and tells me that unfortantly he found white paches on both vocale chords and they are very badly swollen,, he had to take 3 samples and is going to rush through the results as he's concernend. Ok I go   What's that mean ,,well I have to go back for the results in a week or so,,ok I go so I leave,

    well I'm now thinking what's going on my wife in in the medicale industry and is telling me I need to prepare myself for some harsh results. ,,now what the hell am I supposed to think,, does anyone any idea what they think and if it is cancer after a sore throat and this going on for seven months what they reacon on ,,,I'm not sure how I'm supposed to fill yet I mean should I worry shouldn't I worry  I just don't know,,all I know is I have smoked 3 cig gis as I've wrote this and seem to be smoking more as the week where's on,,

     

    well that's about it really I don't even know if there's anyone out there that will see this  but I bet it makes good reading,,by for now world,,,krissi from London england

     

    What a story!
    I don't have any advice for you... yet. Just want to welcome you and get a little more info from you. Do you have trouble swallowing stuff? How long do you have to wait for results? What kind of doctor are you seeing? How old are you? Does your family have a history of cancer? These may help me and others to guide you along.

    Keep us posted!
  • Rickyr1219
    Rickyr1219 Member Posts: 53

    A throat biopsy who to talk to or what to say ??????

    Hi I'm not sure who I'm sending this to or who is going to veiw it but I need to say something about what's going on with myself  ,I don't even know if anyone one will see it ,,well my name is Kriss and I'm not the kind of fella that's good at pen to paper and having a chat about this stuff,,,,

    anyway whoever,,, 

    where to begin. Well I started of with a sore throat about 6mnths ago and became worse with the hoarseness well a little time after my tongue started showing up different colours which my wife thought was thrush of the mouth anyway the quack put me on amoxicillin and I completed the course. ,

    well this went on for a couple of months and it never went away and I just got on with it as that's what blokes do ' they just get on with it' .

    so now 5 months have passed and insisted literally dragged me up the quacks office and they made me a appointment at the hospital,,after seeing throat  mouth specialist he had a look inside the old trap and decided to to have a more poke about with a telescope  right up the hooter. Now over 20years I have put some crap up my nose so this was  a new one ,,he he ,,,,

    well he had a gander at the old vocale and found some swelling there on the box he said. And further investigations was required. ,,criest I thought I got Sherlock bloody Holmes here  what's he think thiscenes crime scene.?

    so this was on a Monday. come Tuesday the old blower goes and it's the hospital to book me in on a Friday for a poke about again so I agree as its best to keep her indoors happy as I want to go out the weekend for a few jars,,so now here iam in the hospital a place that only exists to me in dyer emergencys.If ever. 

    So here iam on the bed misis sitting to one side and the doc walks in and tells me that if they don't find anything they will not take any of my tissue away. ,,yeah I'm thinking that's cool, now 2hours later I'm living on a bed with wheels getting pushed down a corridor towards a bright room with half a dozen people in  nurses everywhere and thers me on a bed with nothing on except a gown.

    Now the old ticker is starting to beat a little bit faster now,,whether its the 4 nurses fiddling about around my bed putting wires on me. .? Or it's the thought I'm getting put to sleep  by an injection. ,,I try and amuse myself and crack a joke to the specialist. That came to see me and stay to him accuse me doc.  If ya find any money down there let me know and ill split it with ya ,,I got a couple of chuckles out the zombies but not much to shout about.

    so now I'm out cold woke up 1 hour 10 min later to someone calling my name ,,I came round pretty quick as I want to be with it ,,literally a few min go by and iam able to talk  and ask the doctor if he found any dollar down the old tunnel so sorry he replies not a penny. ,,lying git I quickly pipe up ya bloody stole it aint ya,,,ha ha ha the nurses go.  Now that's promising I'm thinking I got a laugh this time so maybe all aint to bad.

    so now I'm back in my corner with the wife concerned as she is bless her waiting for someone to let me know when I can go home as I'm not the best. Patient one can be,

     

    well an hour an half flies by and I'm now changed into my clobber and still waiting to go.... I'm felling fine and just want to go when  the curtain opens up and the quack. Pops in and tells me that unfortantly he found white paches on both vocale chords and they are very badly swollen,, he had to take 3 samples and is going to rush through the results as he's concernend. Ok I go   What's that mean ,,well I have to go back for the results in a week or so,,ok I go so I leave,

    well I'm now thinking what's going on my wife in in the medicale industry and is telling me I need to prepare myself for some harsh results. ,,now what the hell am I supposed to think,, does anyone any idea what they think and if it is cancer after a sore throat and this going on for seven months what they reacon on ,,,I'm not sure how I'm supposed to fill yet I mean should I worry shouldn't I worry  I just don't know,,all I know is I have smoked 3 cig gis as I've wrote this and seem to be smoking more as the week where's on,,

     

    well that's about it really I don't even know if there's anyone out there that will see this  but I bet it makes good reading,,by for now world,,,krissi from London england

     

    Welcome

    You did a great job wriitng and even got a chuckle out of me while reading parts of it.  I think I waited about a week from the time they took a biopsy of my esophagus to when the Doc called me in to tell me the news.  I was a little anxious but like you I continued living like I always had been.  Worrying about it will not change whatever the results may be.  I would tell you to google the symptoms you have but I found googling things like this is sometimes much worse than the actual diagnosis.  WE hope for the best for you.

  • BMGky
    BMGky Member Posts: 621
    jgwright said:

    Staying focussed

    Well, the biggest problem I have with the stent is that it SOOOOOO easily gets clogged.  I've been fortunate in that I discovered that if the clog isn't TOOO bad I can foam it out with Coke.  Also the Coke helps keep the stent clean.  I've had it clog maybe 9 or 10 times, but only needed to visit the hospital twice to be roto-rootered, as my wife says.

    Hospice?  They are GREAT.  And my meds are now free and even though we are in a new year, I don't have to worry about the co-pay or anything else from a monetary standpoint.  Hospice is billing Medicare, not my insurance.  Very cool.  The nurse comes out twice a week, and we work very well to keep my pain under great control.

    I also discovered that ibuprofen and oxycodone work extremely well together, and that morphine turns me into a zombie.  And I hate it.  However, it's there if I need it.

    Well my love to you all, and as the Bible says, "Keep on persevering in prayer,"

    ==Jerry

    Good to hear from you

    Dear Jerry,  Thanks for the update.  Wish your news were better.  Glad you have a great hospice team.  Keep yourself comfortable as best you can.  You are in our prayers.

     

    BMGky

  • jaycc
    jaycc Member Posts: 122
    jgwright said:

    Staying focussed

    Well, the biggest problem I have with the stent is that it SOOOOOO easily gets clogged.  I've been fortunate in that I discovered that if the clog isn't TOOO bad I can foam it out with Coke.  Also the Coke helps keep the stent clean.  I've had it clog maybe 9 or 10 times, but only needed to visit the hospital twice to be roto-rootered, as my wife says.

    Hospice?  They are GREAT.  And my meds are now free and even though we are in a new year, I don't have to worry about the co-pay or anything else from a monetary standpoint.  Hospice is billing Medicare, not my insurance.  Very cool.  The nurse comes out twice a week, and we work very well to keep my pain under great control.

    I also discovered that ibuprofen and oxycodone work extremely well together, and that morphine turns me into a zombie.  And I hate it.  However, it's there if I need it.

    Well my love to you all, and as the Bible says, "Keep on persevering in prayer,"

    ==Jerry

    In the days of Hospice

    Jerry,

    I wish I could reach through the computers and give you a hug. So sending you a warm hug from across the lines.

    Also wish your news was different. You have been so kind across your journey to share with others and give out support . I thank you for that, and anything that can be done from a distance please don't hestitate to mention.  

    There are dissovlables for under your tongue forms of your medicine, if you find the pills uncomfortable. Hy husband found them helpful. he also did not like the morphine.

    Our prayers are with you.

  • Ginny_B
    Ginny_B Member Posts: 532
    Thinking of you!

    Hi Jerry, I think of you all the time and pray for everyone involved in EC. Keep up your fight. I hope you are feeling better and that Hospice is taking good care of you - keeping pain away!