doingfine

On May 15, 2013 10:13 PM doingfine wrote:

I am so sorry.I definitely cannot talk while eating.  I have to sit up straight and eat very slowly and keep my chin tipped slightly down.  Eating slowly and having a room temperature drink nearby surely helps.  9 years later and I'm still here.  Best wishes to your Dad.

Sorry I didn't read properly. I just re-read your post and see your father has just been diagnosed with EC. Perhaps the food cannot get down because of the cancer.  When I was first diagnosed I went because I could not swallow food.  I would chew and chew and have to spit it out.  The doctor said the tumor in my esophagus was so large the food would not pass.  I am very sorry for your Dad and hope that he doesn't have too many problems as he continues through this awful journey.

I am so sorry.I definitely cannot talk while eating.  I have to sit up straight and eat very slowly and keep my chin tipped slightly down.  Eating slowly and having a room temperature drink nearby surely helps.  9 years later and I'm still here.  Best wishes to your Dad.

So sorry. Yes, I had dry heaves very badly (2004). Thankfully, I had a woman who was 5 years EC surgery before me and she re-assurred me that she also had dry heaves.  To be honest, I didn't find a remedy.  I did learn not to eat anything with milk.  I could not even have mashed potatoes mashed with milk.  I used chicken broth to mash to potatoes.  It was pretty rough because I was trying to eat soft foods and puddings and the doctor said to use Carnation instant drink.  It has milk in it.  I never dreamed that would be the problem.  Once all the lactose got out of my system I was a different person.  I was so bad that I would take folded up towels with me in the car because I would just heave and heave.  My husband was embarrassed by it.  And, it was summer.  One day I had him take me for an ice cream and what an awful experience that was.  Popsicles are just fine.

Last October 2012 I aspirated and began to vomit and then got the dry heaves.  The doctor gave me an injection to stop it plus an injection of antibiotic because aspiration pneumonia is very dangerous. 

Ask your doctor if there is something he can prescribe for the heaving.  Best wishes.  It will get better (much better), but it will take time. 

So sorry for your Dad. I don't know about others, but the radiation was so rough on my lungs that when I had the surgery to remove the esophagus and portion of stomach, that my surgeon also removed lower portion of my right lung.  I had respritory therapy for a long time after surgery.  I still use an inhaler (combivent) and yes, some difficulty breathing.  Now it is even more difficult because my stomach is competing for space with my lungs.  When I had Cisplatin and Irinotecan, my oncologist said Cisplatin was a very strong drug and would give me lots of side effects.  He was right.  I was horribly sick for the whole 2 months of treatment.  You didn't say if he was getting radiation or not.  My CT scans were "muddy" while I was under chemo/rad and so the scans were not totally reliable.  They thought my lungs looked bad, but then my surgeon told me not to worry because they were so muddy that it could just be inflamation.  Try to keep positive.  The nightmare will last about 6 months, but then the outcome can be no more cancer and he will feel better.  We will be praying for him.

Amen!  My verse when I began my EC journey was Psalm 118:17 "I will not die, but live and declare the works of God."
On May 25th I will celebrate 9 years since my surgery. PTL.

Wow! What a wonderful report. Just goes to show that you cannot predict an outcome. 

H=have
O=optimistic
p=positive
E=expectations
You just never know.  Thanks for that post.

You have had plenty of advice. Just take it one day at a time knowing that it will take a good while to figure out all the food combinations.  After the first month, my surgeon told me to try Chili.  I couldn't believe that, but I tried it and it was so good and it stayed down.  The first month is the pits. 

Anyhow, 8 years ago I was a size 4 to 6 and looked like a skeleton with skin pulled over me.  I weighed about 123 pounds.  Now, 8 years later I wear a size 16 and am a too heavy 176 lbs.  I'm trying to diet.  Once you get through these first 3 months things will look a whole lot better.

I was Stage 2B.  When I finished my radiation, the radiologist said he was sure they killed everything in the tumor.  "He said that thing (tumor) is dead!"  I went through chemo/radiation simultaneously for 2 months.  At the end of radiation, my doctor asked, "Do you want to go ahead with the surgery?"  He was so sure he got it all.  Then I asked, "How many people have chosen NOT to have the surgery after you finished the radiation?"  He told me nobody.  Would you want to be the first and see how it works out?    I wasn't that brave so I went ahead with the surgery. If surgery is a good option for your hubby and his chances are good, have it done, if not then trust.   

I guess I said all that to say this:  "If surgery isdefinitelynot an option, then move ahead with a positive outlook and trust that the radiation and chemo has done it's work and enjoy life.  Actually, I felt wonderful about 3 weeks after I stopped chemo/rad.  After the surgery it took about 6 - 8 months to feel good again and I still have side-effects.  So, this may be a blessing in disguise for your husband.  We will all be praying that your husband gets well again from just these treatments.  Miracles still happen.

Congratulations Joanne. It was a long time coming.  I am so happy for Jim and for you too.  I never know who hurts worse the patient or the caregiver.  After year 5 I didn't need any more PET/CT scans or anything.  It felt wonderful.  Looking forward to your posts when Jim passes his 8-9-10 + year milestones as well as this 4th. 

Hello, I am so sorry you and your hubby are going through this awful time.  Keep positive and keep thinking he will be just fine.  I agree with the rest who have posted.  It is a very long and hard journey, but the end is having life versus not having life without the medical treatment.

My surgery was 9 years ago (2004) this coming May. I was 58 and I retired.  I had the McKewon (sp?) surgery in that I had 3 incisions.  One in the throat, one in the diaphragm to abdomen and the other from front to under shoulder in my back.  My time in ICU was 3 days and then 2 weeks in the hospital.  Don't expect much the first 2 months.  I could not tolerate any milk products at all.  Hubby was great and helped me get my tube feedings.  I chose to have them at night while I slept in my recliner so I was free of the apparatus during the day so I could roam around.  After the first month, I was out walking every day and increased my walk as far as I could.  By the end of the summer I was walking about 1-1/2 miles each day.  By the next fall of 2005 we took a trip for 7 weeks across 22 states.  I was swimming and all.  Summer of 2005 I was out painting secord story of our home.  The first few months will be a nightmare.  My husband was sure he gave me too much morphine one time and called the doctor in an absolute frenzy.  I was okay.  We played a lot of Yahatzee and I would go out of turn, shake 4 or 5 times, but he put up with me. Pain meds made me real dopey.  Oh, dopier.

Stay away from fried foods, really sweet foods and carbonated beverages unless they are FLAT.  The bubbles make the gas worse.  Expect him to cough a lot, have lots of mucous as he heals.  Plenty of diarreah and bouts of constipation from the pain meds. As soon as he can get him to walk. Walking is good for the emotions.  I needed small tasks.  That summer I rolled lots of pennies, dimes, quarters.  I also liked to do word puzzles so we stocked up on some of those books.  I had many sleepless nights so television became my friend. I got carsick real easy and took towels with me so I could be sick in them.  Brought up lots of mucous.

I think the final thing I want to tell you is to stay in communication with people on this board.  Each day will present a new challenge.  Everyone is different so between everyone here, you will get some great help on how to overcome the difficulty of the day.  I had a nurse come to the house also and they set me up with a lot of things including how to care for and use the j-tube.  I had that thing for 8 months.  UGH!  But, it kept me alive and healthy while in recovery.  Best wishes and prayers as you go forward.  We will watch for your posts.  Everything will turn out okay.  I was Stage 2B...tumor not through the wall yet.