Last month has been miserable
I don't know where to begin. After I saw the lung doctor, I tapered off the prednisone which I had been on for about 4 months. I also tapered offf the gabapentin that I did not think was helping control the cough. That was not pleasant coming off the prednisone. The lung doctor thoght for sure the cough was caused by GERDS. I could not get into a GI doctor until June 10.
In the meantime my cough continued even though I had cough syrup with codiene, tessalon perles and hydocone cough syrup. The heartburn continued also. I lost my appetite and nothing tasted or sounded good. I have never had loss of appetite like that, even when going through chemo. I went to the cancer center on Wednesday and Thursday to get IV fluids. Something I never had to do before.
On Friday May 29 I started with dry heaves, and the cough continued. I went to the ER on Saturday May 30 and was admitted to the hospital. A GI doctor came on Monday and said he did not think the cough was due to GERDS and really did not recommend anything different. I was hoping he was going to do a scope give me the "magic answer". I was very disappointed.
Later that day I had a repeat CAT scan. Later a cardiac thorasic surgeon came to see me. I wondered why he was seeing me. He said the CAT scan showed that I had a hole or tear in my trachea. I was helicoptered to Barnes Hospital in ST. Louis that night. The next day I had another bronchoscopy. They talked about putting a stent in the trachea. Luckily I did not have to have a stent put in, but the trachea had a lot of damage from the radiation I had last fall.
while in the hospital I ran a temp of 103 for several nights. I had just finished 2 weeks of antibiotics. At home I was hot and cold but never had a temperature when I checked it. So I got stated on another round of antibiotics, different from the first 2 weeks. I was in the hospital for 10 days. It is good to be back home.
Nausea has been a big problems for me too, so I am taking anti nausea medications. I even resorted to wearing "sea bands" which helped me when I was nauseated with chemo. Along with my cough medicines, I m taking flexeril since my back is sore from so much coughing. I alos have a nebulizer to use as needed.
My cough is better. My appetite improved some, but I have lost 15 pounds. I am on a slow road to recoveryl. I am still hoping to go on "the Majestic Parks Tour" leaving JUly 9th.
Keep t he prayers coming. Had I known whst problems I would have with the SBRT treatments, I think I would have opted to do 6 more rounds of chemo instead. But we can't change what has already happened. In peace and caring.
Even though I have not posted lately, you and your caregivers remain in my prayers.
Comments
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I have been thinking about you and keeping you in my prayers
So sorry to learn about all your travails. Our journeys are so unpredictable and sometimes I wonder about the long term effects of everything we have been through. But then I realize that thinking about anything long term is good these days! I hope you heal and rest and enjoy your gardens. More prayers going your way. Anne
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wow!
Knew something was not right when you didn't check in! Had no idea all of this trauma was going on! What are they going to do about the tear? I don't see how it can heal with some kind of extra treatment even though you are taking so much now. Won't the regular normal acid keep it from healing? I am so sorry you are suffering so much! You must be so tired! Please let us know what happens...we all care for you! Best, Debrajo
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Sounds horrible!debrajo said:wow!
Knew something was not right when you didn't check in! Had no idea all of this trauma was going on! What are they going to do about the tear? I don't see how it can heal with some kind of extra treatment even though you are taking so much now. Won't the regular normal acid keep it from healing? I am so sorry you are suffering so much! You must be so tired! Please let us know what happens...we all care for you! Best, Debrajo
Oh, Ro, so sorry to read all of this! And yet, I can't help but think how amazing our bodies are that in spite of the damage from the radiation, you are recovering. You are, aren't you? It does infuriate me that you had to go on so long without knowing the cause behind that horrible/getting worse cough. It was too long, doggone it! Was the tear repaired or what will they do about that?
Sending prayers your way.
Suzanne
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Ro,Double Whammy said:Sounds horrible!
Oh, Ro, so sorry to read all of this! And yet, I can't help but think how amazing our bodies are that in spite of the damage from the radiation, you are recovering. You are, aren't you? It does infuriate me that you had to go on so long without knowing the cause behind that horrible/getting worse cough. It was too long, doggone it! Was the tear repaired or what will they do about that?
Sending prayers your way.
Suzanne
I am also sorry to hearRo,
I am also sorry to hear to hear this. The darn cough had been going on for so long! I hope after the diagnosis & treatment you received that this will now be behind you & you can get your health & strength back to resume your plans.
But like Suzanne I wonder what will be or has been done about the tear?
Please keep us posted. We care about you!
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Suzanne and KathyKathy G. said:Ro,
I am also sorry to hearRo,
I am also sorry to hear to hear this. The darn cough had been going on for so long! I hope after the diagnosis & treatment you received that this will now be behind you & you can get your health & strength back to resume your plans.
But like Suzanne I wonder what will be or has been done about the tear?
Please keep us posted. We care about you!
when they did the bronchoscopy they did not find a hole or tear. They just found damage to the trachesa. Sorry I did not make that more clear. My thought process is not what it should be. They are hoping the damage to the trachea will repair itself. I will have a repeat bronchoscopy in a month. In the meantime I am trying to control the cough and nausea.
Thank you everyone for your concerns and prayers. It is great to have the support of everyone. In peace and caring.
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So sorry
I am so sorry you had to go through all of that. Praying you are on the right road now.
I am hoping that you do feel good enough for your trip.. I can tell you it is well worth the effort and time. The three parks you mentioned earlier are truly majestic. Yellowstone and Glacier are in my back yard. Hint: Even in July it can get cool in this area. Glacier just opened yesterday so it still has snow on the sides of the road. Unbelievable beauty.
Lou Ann
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Oh no, Ro!
So sorry you areOh no, Ro!
So sorry you are going through all of this. I wish I could offer some form of comfort to you that would make this all go away. I applaud your courage to write to us to let us know what was going on while you are still recoverying! I am sending you and keeping you in my prayers that will give you strength and recovery so that you can still go on your Majestic Parks Tour.
Wishes you well,
Kathy
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Feel Better!
Ro and ALL....
Ro, I'm really sorry to hear about your month. I hope you heal quickly.
Everyone, I'm new to the sisterhood but wanted to say this: Ro, took the time to send me a comfort response and answer my question yesterday. I find that to be AMAZING. Someone that has been through the that kind of an ordeal, still finds the kindness and strength to help a stranger. WOW...
Cindi
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TeddyandBears_Mom,TeddyandBears_Mom said:Feel Better!
Ro and ALL....
Ro, I'm really sorry to hear about your month. I hope you heal quickly.
Everyone, I'm new to the sisterhood but wanted to say this: Ro, took the time to send me a comfort response and answer my question yesterday. I find that to be AMAZING. Someone that has been through the that kind of an ordeal, still finds the kindness and strength to help a stranger. WOW...
Cindi
I do notTeddyandBears_Mom,
I do not find it at all surprising that Ro took the time to do that for you. She is an incredible woman & true cancer warrior. She has always been availalbe to help others on this board...I have been visiting for almost 3 years and she is consistently here.
In addition to Ro there are several other ladies who have dedicated their time to helping us who come here terrified & looking for support, education & answers.
I am not a religious person, but I do believe the Spirit works thru these very special ladies.
Welcome to the board.
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Ro, I am SO sorry to hear
Ro, I am SO sorry to hear this!!!! It is so sad to hear that things had to get so crazy to get some attention. I am so glad to hear that you are doing somewhat better. Keep taking care of yourself with the goal of the July 9th tour.
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sorry you are haviing a tough
sorry you are haviing a tough time. will be praying for you
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Oh Ro - what a terrible time
Oh Ro - what a terrible time you've had. You must have felt so poorly - and they must have been worried about you to airlift you like that. I am so pleased you are home and recovering, albeit slowly. I hope your appetite is slowly returning and you are able to control the cough. All the coughing must be putting a strain on the muscles of your back and trachea, so it's no wonder it's taking time to heal. Not much comfort, I know, but hopefully it will improve over time.
It's always a difficult call to decide which treatment to go for. I am sorry that the SBRT has caused you so many problems. I was warned of all sorts of potential side effects from the Cyberknife (insufficiency fractures, bowel damage, sciatic nerve damage etc etc) but on balance decided to go ahead as it was the only treatment that had any chance of completely killing the tumour. So far, I am OK, but these things can take months/years to show their effects, so none of us know what's around the next corner.
You are in my thoughts and prayers.
Helen xx
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My prayers to you, RoHellieC said:Oh Ro - what a terrible time
Oh Ro - what a terrible time you've had. You must have felt so poorly - and they must have been worried about you to airlift you like that. I am so pleased you are home and recovering, albeit slowly. I hope your appetite is slowly returning and you are able to control the cough. All the coughing must be putting a strain on the muscles of your back and trachea, so it's no wonder it's taking time to heal. Not much comfort, I know, but hopefully it will improve over time.
It's always a difficult call to decide which treatment to go for. I am sorry that the SBRT has caused you so many problems. I was warned of all sorts of potential side effects from the Cyberknife (insufficiency fractures, bowel damage, sciatic nerve damage etc etc) but on balance decided to go ahead as it was the only treatment that had any chance of completely killing the tumour. So far, I am OK, but these things can take months/years to show their effects, so none of us know what's around the next corner.
You are in my thoughts and prayers.
Helen xx
Ro, I seldom post here, but I read others' posts nearly every day (funny how reading about UPSC has become my newest hobby) and have followed your many posts. I can't imagine how hard it has been for you not to have any resolution as to your ongoing cough these many months only to finally have a definitive reason even though they can't really do much about it.
Nevertheless, I am glad to learn you are back home and hope that you will be feeling well for your upcoming trip!
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Hello
Keeping you in my thoughts and prayers.. you are one strong , feisty lady.. hoping you get some relief soon.. glad your appetite is coming back..
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RO10 , I am Sorry .
You have been an inspiration to us, I wish for your strength and your resolve to fight this cancer every step of the way, When I am weakened I read your posts and muster strength for another day. thanks for your valued contribution to all of us newbies, you are admired and loved. Try to do your trips, trips keeps me sane , if only for a short while.I wish you showers of blessings with NED.
Moli
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Bad Monthmolimoli said:RO10 , I am Sorry .
You have been an inspiration to us, I wish for your strength and your resolve to fight this cancer every step of the way, When I am weakened I read your posts and muster strength for another day. thanks for your valued contribution to all of us newbies, you are admired and loved. Try to do your trips, trips keeps me sane , if only for a short while.I wish you showers of blessings with NED.
Moli
Sounds like it has been a bad month for everyone especially RO10 and Molimoli. My 94 year old mom died on June 9th. I kept her at home and was with her til the end. Hospice was a joke. Although they sent such caring nurses and aides, truly saintly women, the administrative part was awful. They wanted to pull continuous care off mom at 8PM Monday night and she died 10 hours later. I've never seen anyone pass before and it was very spiritual, I know she's in a better place. Her lobular carcinoma of the breast metastized to the small intestine, the oncologist gave her 1-2 years, she lived 1 year, and 8 months. I wish they would find a cure for cancer. Although mom lived a very long life, it's still hard to lose your mom, the best friend most of us will ever have.
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Flyeretteflyerette65 said:Bad Month
Sounds like it has been a bad month for everyone especially RO10 and Molimoli. My 94 year old mom died on June 9th. I kept her at home and was with her til the end. Hospice was a joke. Although they sent such caring nurses and aides, truly saintly women, the administrative part was awful. They wanted to pull continuous care off mom at 8PM Monday night and she died 10 hours later. I've never seen anyone pass before and it was very spiritual, I know she's in a better place. Her lobular carcinoma of the breast metastized to the small intestine, the oncologist gave her 1-2 years, she lived 1 year, and 8 months. I wish they would find a cure for cancer. Although mom lived a very long life, it's still hard to lose your mom, the best friend most of us will ever have.
I Am so sorry to hear about the passing of your Mom. It is hard to lose your Mom. I know you had a lot of extra stress because of your Mom. May you find comfort in knowing your Mom is not suffering anymore. In peace and caring.
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So sorry to hear about yourflyerette65 said:Bad Month
Sounds like it has been a bad month for everyone especially RO10 and Molimoli. My 94 year old mom died on June 9th. I kept her at home and was with her til the end. Hospice was a joke. Although they sent such caring nurses and aides, truly saintly women, the administrative part was awful. They wanted to pull continuous care off mom at 8PM Monday night and she died 10 hours later. I've never seen anyone pass before and it was very spiritual, I know she's in a better place. Her lobular carcinoma of the breast metastized to the small intestine, the oncologist gave her 1-2 years, she lived 1 year, and 8 months. I wish they would find a cure for cancer. Although mom lived a very long life, it's still hard to lose your mom, the best friend most of us will ever have.
So sorry to hear about your mom, Flyerette.
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flyerette, I truly canflyerette65 said:Bad Month
Sounds like it has been a bad month for everyone especially RO10 and Molimoli. My 94 year old mom died on June 9th. I kept her at home and was with her til the end. Hospice was a joke. Although they sent such caring nurses and aides, truly saintly women, the administrative part was awful. They wanted to pull continuous care off mom at 8PM Monday night and she died 10 hours later. I've never seen anyone pass before and it was very spiritual, I know she's in a better place. Her lobular carcinoma of the breast metastized to the small intestine, the oncologist gave her 1-2 years, she lived 1 year, and 8 months. I wish they would find a cure for cancer. Although mom lived a very long life, it's still hard to lose your mom, the best friend most of us will ever have.
flyerette, I truly can sympathize with you on hospice adminstration. At 2 o'clock in the moring I was calling the hospital nurse, who really was our advocate telling her we knew my dad was dying, because hospice wanted to move my dad out to a private facility!!! When this lovely lady walked in to my dad's room the next day she said she had gotten my call and he was staying put. He died later that evening.
I know hospice can be such a good thing, it was the administration that took that away.
I am so sorry. It really doesn't matter how old they are, it is a loss. I agree with you I wish they would CURE cancer.
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