Stephanie, from my personal experience going through 2 rounds of radiation with Frank, your Mom is going to get worse as treatment goes along. There is although, no need for all the pain. Have you discussed your concerns with the doc ? As far as a feeding tube, it`s no big deal, in the course of things. Please discuss your concerns with the doc about these things, she needs to at least be as comfortable as possible..........Dee

Stephanie,

My nutritionist gave me a product called GlutoSolve that is sold at the oncology pharmacy at the Harold Simmons Comprehensive Cancer Center at UTSouthwestern in Dallas. Is is glutamine and the purpose is to promote healing throughout the digestive tract by stimulating eppitheleal (sp) cells which exist anywhere there is mucous membrane. It helped my mouth, throat and on down as it got raw from radiation. The doctor approved it for me but you may want to run it by your doctor or nutrionist first as I am not medically trained or qualified to prescribe this over the counter product. If the doctor/nutrionist agrees it could help, I would be glad to mail some to you. I have several boxes (one week for twice daily) that I was wondering what to do with. Just let me know. You can also get the Miracle Mouthwash stuff that has lidocaine, benedryl and maalox, I believe, that you just swish around and it numbs the sores in the mouth. Your mom is halfway there and even though it gets tough, she is on other side of the hill now.

We went to Japan for a week to see relatives when the kids had spring break. I do not know if I was up to it only 5 months post radiation. When I got there I could tell it was time! I gained almost 12 pounds for the first time in 7 months and my throat and mouth felt better than they had for about that long. It was a long ride on the plane (14 hours there, 11 back) but the excitement really built as we were getting ready to go and it was a wonderful time. I had a PET scan a couple of days after getting back and if it was bad news, we had done everything we wanted to do and saw family for perhaps the last time. The good news when we got back was just a little icing on the great cake we already had!

Ed

I remember when my mother was terminally ill with cancer and we made a list of things she wanted to do and places she wanted to see. She often spoke of Amsterdam and asked me to take her there because of their views on euthanasia. I told her my Christian beliefs would not let me take another life or assist her in any way but I let her know that I would love to see the coffe houses I had heard so much about over the years. I agreed to take her and said if she choose to not make the return trip I would not coerce her or pressure her to leave and we would say our final goodbyes; as much as my heart would ache, I would understand. I told her to be sure and put that on the bottom of the list, though, because nothing could happen if that was her last trip.

In October 2000 my wife, son and I took my mother to Freeport, Bahamas. It was my 12 year old son's first blue water dive and my wife's birthday. On my wife's birthday, we all 3 went on a shark dive while my mother sat on her balcony facing the ocean. She had brain mets with four sizeable tumors and the emotional roller coaster was very difficult for all of us to handle, but we did it anyway.

It turned out to be the last trip my mother was able to make and to this day seeing her look up at me with her toothless smile as the plane descended to the island and remark, "We're going to the Bahamas!" is one of the most precious memories of her I have!

During the last six months we reunited my mother with a friend from Japan she had not seen for 50 years and took her everywhere she wanted to go, let her see everything she wanted to see. Heck, she even dragged me to a bridge club and I had to learn how to play bridge. I was 44 years old and I could hear the other folks grumbling, "who is that kid?". I brought the average age down at least 10-15 years.

Stephanie, if there was only one piece of advice I would give you or anyone going through this dreaded disease, MAKE THE MEMORIES! Every day fretting and worrying is a day you will never get back. Make the most of every one, like we should be doing anyway.

Ed

Stephanie,

I will call you tonight. We are going to the Colorado River (Parker, Arizona) to use our new boat and its a 5 hour drive so I have plenty of time to talk.

Your mom will get through this believe me I felt the same way.......

Take Care,
Dani

Hello All of you wonderful friends in here!

Thanks so much for your encouraging and helpful advice. It is 12:30 am and I am tired but wanted to respond briefly that I am so truly touched by all of you!

Without you all, I could never get through this and I have utilized all of your advice. Ed, please email me as I would love to talk further with you.

Danielle, have fun at the river. :-) You deserve it!

Dee Cathy and Anita, Thank you so much. I promise to write more tomorrow as I am so tired.

God Bless you all!
Stephanie

Stephanie,

I forgot to bring your number with me...I will call you tonight. Hang in there. I know this is really tough for us daughters but I promise it gets better. My mom would be more than happy to talk to your mom if she feels up to it.....

Dani

PS. The river was awesome our boat ran really good. Maybe next time up I'll be able to get in the water. I had surgery on my toe on the 23rd of April and the stitches aren't supposed to get wet.

Stephany hang in there sweetie...you are such a blessing to your mum.
I am a proponent of the feeding (PEG ) tube..even though my husband had intractable nausea and ended up have to use his port for feeding . Just pester the life out of the doctors and nutritionist till you have a regimen you can live with. Make those trip plans ..the planning is half the fun.
Marica

Dani,

I am glad you got to enjoy the new boat and I hope it was a great time for all!

Ed

Thanks Marica so much, I am having a hard time with my mom eating. The docs are not checking her electrolytes or anything for that matter and I am so worried. I think she is pleased about the weight loss and is still calorie counting when she isnt even eating anything. When I suggested the drink that was suggested to me in here, she got upset at the calorie count. Mother's day will be hard also because I know she wont be able to eat and we made reservations for a nice brunch and I suggested that she could take a "rain check" for when she could eat and feel better. I am just so torn now with her not eating and frustrated with trying to get her to eat. She takes the liquid and numbs herself and tries to eat but gets frustrated and gives up! I am so worried.

Danielle, I will call you in the next day or so. Things have been so hectic but it was so great to hear from you and to learn that your mom is doing so much better. I shared with my mom that your mom is doing well and it cheered her up! I am jealous about the river :-) as I love the ocean and any body of water for that matter :-) and of course, boats! Glad you are getting out and having fun.

Ed, your emails have also meant so much to me. THanks