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going back to hospital on 10/5 for last chemo cycle

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
Well I am getting ready to wear an extra pair of my big girl pants!! Cant believe I have to go back for 5 days of no sleep and no baths etc. My last chemo cycle will be the old 5FU and cisplatin and keep up my radiation treatments also. I have had a bumpy ride and sitting here wearing a Holter monitor for my heart can't wait to get this contraption off. It measures 24 hrs of your heart rhythm and say a prayer it does not show break thru atrial fib or the heart dr will want to stop and put a pacemaker in before the rest of my journey. I have been having so much trouble with being dehydrated because my swallowing has gotten progressively worse and cannot hardly get my meds down. I tried the elixir of lortab and the lidocaine before I try to take them but the pain after I get them down with water is really bad right where my tumor is. I have gone from about 144 to 135 and am trying my best to get fluids and very soft stuff but it is still mainly broth and cream of wheat and ice cream, being a diabetic kind of limits your options. I did a positive thing, sent the head of operations a letter of complaint on behalf of me and the rest of the patients to say how bad the food service is. No snacks between meals and horrible food esp if you are on mechanical and soft foods. More than one patient has told me to do it. So keep me in your thoughts and prayers, I will be at good old St. Joseph's from 10/5 to 10/10. I will be thinking of all of you and praying esp for Kitten my heroine. All of you are in my daily prayers, we need to fight this!! My son joined the Esophageal cancer awareness group and I did too. What sad stories and hardly any funding. take care,
Donna70

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Donna,
Best of luck to you and we will continue to keep you in our thoughts and prayers. Just think, this time next week, you should be coming down the home stretch. My husband always hated the anticipation of going in for his chemo cycles...like you, he would go in the hospital for 120 continuous hours of 5-FU....after getting his cisplatin and taxotere. Certainly wasn't fun.....fortunately for him, he could eat....that is, when he was too nauseous from the chemo.
Stay strong,
Jane

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Thanks William and Jane for your words of encouragement. I am trying to have my big girls panties and also my faith handy at all times. I have so many loved ones praying for me and all my friends here and elsewhere, they pray when I am too scared to. I am hoping that the pre surgery stuff is harder than the surgery and every good post I read encourages me more. I definitely have faith in my drs and would not be doing it any other way. I am the same stage as you were William except it is squamous, seems like Mike Wild Turkey is the only other squamous person on this board so I get encouraged when he does good. thanks again, I appreciate all words of encouragement. take care,
Donna70

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Thanks MR Marshall,

Donna---even thought all these names on this website seem to blur together---there are REAL people that are praying and thinking of you---Mr Marshall is our role model/example... My dad is having a hard time at his 5th week of Chemo/Radiation at DUKE (of 6 weeks)---after sailing thru 4... so hard to deal with after being so healthy and doing so much better than Docs expected... take t one day at a time---take a deep breath of the fresh air provided to us---and then rest in the comfort provided from above---somehow (and I don't know how) things WILL work out... hang in there..
Kim

emg09
Posts: 252
Joined: Mar 2009

Hi Kim,

Sorry to say, but your dad is going to feel worse every cycle. My dad went down hill as each visit went on. They had to adjust his chemo and that worries me. Does it work as well?? My dad finished cycle 6 yesterday. They are flying home this morning. He's not feeling good today, up most of the night with diarrhea. I'm praying they are able to get home without him having too many problems. Then he'll be home to rest and they go backup on the 13th or 14th for a new scan. God, I'm so praying to have some good news. I'm just in a funk today, I guess. I should be happy they are coming home and I am, but I feel worried and I'm not feeling like being the ROCK for them this weekend. Hopefully this glummy mood will pass by the end of today!! I'm really looking forward to seeing them. I went over last night and weeded their flower beds and planted some mums. I'm hoping that adds some Fall cheer for them. I had wanted to run to the store to get them some food, but just ran out of time. Sorry, I'm rambling!! I'm really praying for some good news for my dad on the 14th. We could really use it!!!

Everyone take care and keep your faith!!
Hugs!!
Erika

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Kim,
What is your Dad's name and how old is he? I know what you mean when you say he was healthy and then the after effects have taken so much out of him. My husband can't get over how good I looked before chemo you would never have known I had cancer, now I am losing weight rapidly and trying hard to maintain my nutrition but can't get enough in. I will pray for him and hope like William is saying it is because the cancer cells are getting killed that he is getting weaker. I am only set up for 5.5 wks and did great the first week in the hospital but then the poop hit the fan when I got home. I am thankful I am still around and every day to a cancer patient is a good day. Thanks for those prayers and good thoughts and hope your Dad does better!! take care,
Donna70

WildGoose7's picture
WildGoose7
Posts: 34
Joined: Aug 2009

Donna

Good fortune with this next go round. You've been through a lot and the heart questions just add more stress for you. Weigh out everything for the decision process.

Praying for you.

Mike

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Mike,
Hope you are doing better, think I want a stent too!!!! Cant imagine how I am going to go thru 6 wks before surgery if I can't eat now. Might wind up with a food tube before surgery. I have to go for Iv infusion every couple of days. Want a laugh? I wore that darn holter monitor for the 24 hrs and they called me yesterday and said it malfunctioned and did not record right. Now I have to have another and it just adds to the discomfort, so told them after I get out of the hospital, I was too upset they wanted me to get hooked up today and I have a full plate with radiation and infusion afterwards. My decision process is going to be dependent on the PET scan which in my case did not light up my 4 cm tumor or lymph node, so going to beg surgeon to look around carefully at my organs before he removes esophagus to make sure it has not advanced too far. I am still hopeful and have my faith that God will do what is best for me. Are you still eating good? and still having the 5 FU running? What is your predicted surgery date? Mine should be right after Thanksgiving. Thanks for those prayers you and everyone here of course are in mine. take care,
Donna70

Islandbayfarm
Posts: 21
Joined: Sep 2009

Donna,

Are you taking anything like lorazapam sp? to take the edge off of your pain?
They also gave my husband a big supply of liquid morphine.
He was only in pain, at the radiation site, and swallowing that last chemo week and
about a week after. Then the tumor shrunk & he was eating well! You will too!

Can you have Glucerna drinks? They're a protein made for diabetics with much less sugar.
This will be behind you before you know it.

As our HERO & Spouse of STEEL, M/M Marshall, say the chemo is worse than the surgery.
You CAN do this. I'm guessing you have to have your treatment inpatient because of
diabetes? Have someone bring you the foods you can eat and don't stress out about the STUPID hospital. We had the same problem at our local hospital where he has chemo.
Couldn't even get a plain vanilla ice cream, tons of chocolate! Eating is very
important to avoid the feeding tube. Small sips & bites.

Don't upset yourself with others sad stories. Many people have surgery with less
competent surgeons than yours. Focus on relaxing and getting through one day at
a time.

My prayers and positive vibes are with you,
Kathy

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Kathy,
I have been having trouble swallowing since the second week after my initial chemo and the dr put me in because I am 65 and he wanted to prevent kidney damage and low blood counts. My food choices are the Glucerna, cr of wheat and milkshakes and ice cream not much more. I feel like my tumor is getting bigger because I have pain right where the tumor is when I take pills and it hits that spot. I am bringing some of my own stuff and will get my husband to go to the cafeteria for soups etc. I wrote the hospital the letter for all the other pts who told me what problems they had with the food. They have given me a giant bottle of Lortab and lidocaine to numb my esophagus but when I take it, I wind up choking and digging the pills out of my throat. I don't have constant pain just when I try to swallow pills which I take a lot of. I am trying to stay positive but it gets hard sometimes and I know I have 8 more weeks before surgery. The nurse told me today they don't want to put a tube in before surgery because of the danger of infection and in that case I don't want one. I will endure, it has just been a rough week. I will ask the dr for some Ativan or something similar maybe it would help. thanks for your encouragement and prayers.
Donna70

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Are you also getting radiation? If your not then I don't understand why they haven't put
in a stent that was the second thing Al had done they did it while he had his endoscopic ultrasound because he didn't want a feeding tube until it was needed. He did loose
weight but eventually he was able to eat better.

The reason that you are feeling the tumor now is that the chemo is working and I will actually swell before going down that was another reason that they put the stent in.

Ativan will help alittle not so much with the pain but it will take the edge off as far as
nerves and anxiety it will also increase you appitite.

Good Luck and God Bless.

Kath

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Kath,
Boy thanks for that info about the tumor swelling. I have been getting radiation all these weeks and will get it while in the hospital and four more days after I get home. I have two areas being radiated the tumor site right between my breasts and to the left of my esophagus where the positive node is. They tell me it is the radiation causing the swallowing problems. I just can't seem to get enough fluids in and I am trying to drink all the time but it has to be warm. Kath, I am over the moon that you got the date, so happy to hear good news, marking my calendar now. Prayers for you all and all on this board, patients and family!! take care and thanks,
Donna70

Islandbayfarm
Posts: 21
Joined: Sep 2009

Donna,
Why are they choking you with pills???
Get liquid, morphine, oxycodone & eat!

Praying for your relief,
Kathy

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Kathy,
Not all meds come in liquid form, took 3 days to find a diabetic med that is a small pill and not a giant one like the Metformin. luckily most of my pills are smaller, it just hurts even just drinking can hurt. It is expected because of the area being radiated but thanks!! take care,
Donna70

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