Comments for Lightly Toasted

Comment on This site’s reason for being by dmnewman

dmnewman — Mon, 31 Aug 2009 20:30:43 +0000

Sorry I don’t have a highly respected source for my recipe. It’s just a combination of things that are known to have high antioxidants and vitamins. Then I tweaked it to suit our tastes. We just like it…a lot and the fact that I’m still here testifies to the antioxidant power of the combination. Plus you can’t screw it up.

Comment on This site’s reason for being by notochemo

notochemo — Fri, 28 Aug 2009 15:00:09 +0000

Thank you for putting up your blog.

My husband was diagnosed with lymphoma and we decided against chemo. His treatment includes:

Essiac Tea
Several other herbal teas
Bicarbonate IV
Vitamin C IV
Homeopathic remedies
Anticancer smoothie (as advocated by Dr Tom Wu although some say he is bogus and I am still researching)
Diet change (whole grains, fruits, vegetables – organics)
Energy healing (reiki, shiatsu, meditation, pranic breathing, etc.)

Could I ask how you decided on that smoothie recipe of yours.
Mine is from Dr Tom Wu and I have it posted on my blog.

Appreciate you sharing your journey for all to read.

Thank you.

notochemo,wordpress.com

Comment on More Traveling with Your Feeding Tube by Beverly Williams

Beverly Williams — Mon, 27 Jul 2009 17:52:03 +0000

you got brass balls. i love you

Comment on Living Well with Your Feeding Tube by dmnewman

dmnewman — Sat, 20 Jun 2009 03:00:05 +0000

D, Wow, do i understand. i have some of the same issues. she should not feel alone at all. have you searched the various blogs for esophageial or throat cancer? i know there’s are some other blogs out there. i will see if i can any and create a link to them.
is your mother using a spray moisturizer like oasis when she starts to choke. if my mouth gets dry, i use that or biotine’s spray and seem to get immediate relief. all the best. d

Comment on Living Well with Your Feeding Tube by D

Fri, 19 Jun 2009 03:03:22 +0000

Hello,

I can’t tell you how happy I am I found this site! My mother had throat cancer 12 years ago and survived it, however from all the radiation she had she has not been able to swallow or eat anything since then. She has been on PEG for 12 years now and though she is used to it and has excepted the fact that she will never swallow again, I think she feels very alone in her situation. She has a lot of trouble with choking on her saliva and some other issues. She is also starting to have panic attacks because she feels as if she is going to choke. I was wondering if anyone knows of any support groups or anyone she can talk to who would understand her situation and can relate to her. I would love to hear if anyone has any suggestions.

God Bless,

Comment on More Advice on Your Feeding Tube by Amy

Amy — Wed, 03 Jun 2009 22:34:31 +0000

Hello again D. Unfortunately, we do not have the time to postpone the trip. I already think we may have waited too long to take it. If she doesn’t go now, she’ll never go. There is still a possibility that she won’t be able to travel when the time comes. I think I hastly planned the trip because she wants to go so badly. Her husband and family support it, but I’m afraid none of us thought it through completely. I would have thought her Dr’s would have discouraged it or expressed their concerns if they had any. At this point, I think I will keep planning as if we are going, but if her condition changes dramatically, I will suggest cancelling. I must say I’m quite nervous about it now. I so appreciate all of your advice and please don’t feel that you’ve dissuaded me. You’ve opened my eyes to what I think we’ve all been refusing to see. Her spirit is so strong and I think we expect too much from her. With many thanks, Amy

Comment on More Advice on Your Feeding Tube by dmnewman

dmnewman — Wed, 03 Jun 2009 22:15:11 +0000

i hope i didn’t dissuade you from making the trip. i realized after i sent the mail that perhaps you could use a powder and water for her travel food. then the problems of heavy cans, etc. would be solved. the privacy thing is still an issue. there is one other consideration. if she is freshly healing from an abdominal surgery, she will be fine to travel by car or bus, until it hits a bump or a length of bumpy cobblestone road. the more i think about that trip, the less practical it seems. i wonder if you could postpone until the fall. better prices, more healing time for her, and more familiarity w the tube/travel issues. whatever you decide, your friend must struggle with a new life style that intrudes on her independence. she will have to tell you when she has to eat. and you will have to get used to her not being able to share food while you’re eating. you will feel guilty at times because you can eat and enjoy. she will feel guilty at times because she knows she’s making you feel awkward. good friends and good spouses do get past that. best of luck and bon voyage. d

Comment on More Advice on Your Feeding Tube by Amy

Amy — Wed, 03 Jun 2009 16:22:35 +0000

D, thank you for your detailed e-mail and advice. It was quite helpful. Although, I must say that I am a bit worried about the trip now. I think we’ve overlooked the amount of pre-planning that needs to be done…especially where the peg-tube is involved. I will definitely recommend she ask for the mickey button if possible. I had hoped to go along on her next Dr’s appt to ask the questions I need to know before making the trek across country, but I think she prefers her privacy. I completely understand. I will write a list of questions to have answered instead. I want to be sure we are being smart about this and that I am equipped with the appropriate tools and information to guarantee her safety is never in jeopardy. I thank you so much for your help and advice. It is very much appreciated!

Comment on More Advice on Your Feeding Tube by dmnewman

dmnewman — Wed, 03 Jun 2009 03:54:30 +0000

amy, a trip to italy would too ambitious for me, but at her age, with some advance planning, it may be very do-able. your friend first needs a statement from her doctor saying that she tube feeds. that may be necessary for the tsa when she goes through a check at the airport. we tube feeders tend to look like we’re wired up with a bomb on the xray machine. the tsa agent thanked me for having a note when i went through security in las vegas.
second, will your friend be on special food or eating regular food from a blender? if she’s eating special food, that becomes a significant problem. the cans are heavy and tedious to travel with. if i’m going to be in one location for a few days, i have my food shipped there ahead of me. but double check to make sure it arrives. if your friend is going to eat regular food, pureed through a blender, where will the blender come from? and will it have an adapter for european power?
if your trip is not too long, you can check to see if ensure is readily available in italy. that could solve your problems instantly.
another issue for a tube feeder is privacy. since she must raise her shirt or unbutton her blouse partially to access the tube, she will need privacy every few hours while traveling. that’s an issue on the plane.
also, when she is traveling, she will need a carry-on tote that will hold food, a light weight small towel, the tube, the syringe, a glass for water, and a bottle of water to flush the tube after eating. on a short flight, you can just pump two cans before flying. but an overseas flight is a different story. tricky planning. but if you’re open with airlines and she buys a ticket stating she’s disabled, they will probaly do all they can to accommodate her.
the surgery itself should not be a problem in two or three weeks. i don’t recall that i felt sore after the surgery. if so, it didn’t last long. i did, however, have intestinal issues that other have complained about w tube feeding. also, ask your friend if they are doing a standard peg tube or a mickey button. the mickey button is much easier to deal with and is not visible through the clothes.
one last thing. i do not travel overnight w/out taking a sterile “back up tube” and mickey button just in case my tube broke or the mickey malfunctioned. i could go to the hospital and have the whole mickey reinserted w/out worrying about whether the hospital carried the right model, or had one in stock.
i hope this is helpful to you. if you have other questions, don’t hesitate to ask. i’ll answer based strictly on my own experience and hope it’s useful to you. all the best. have a wonderful adventure in italy. d

Comment on More Advice on Your Feeding Tube by Amy Johannsen

Amy Johannsen — Tue, 02 Jun 2009 23:55:33 +0000

Hello D. Let me begin by thanking you for this wonderful site and all of the helpful and positive advice. You have an amazing way of explaining everything without making it sound frightening. I have a friend, 35 years old, who has been diagnosed with PBP, a form of ALS. She is losing the ability to swallow. She has not had solid foods since December and never will again. Even water with the thickener added is no longer easy. We are taking a trip to Italy in 32 days and she has decided to get a peg-tube. She will not get it until 2-3 weeks before we leave. I had been worried that the trip might be too much for her, but it is something that she really wants to do and her doctors say it’s now or never. Do you think, from your personal experience, that the 2-3 weeks will be enough time for her to adjust to the feeding tube? Also, I had read earlier about your tips for traveling, but am now unable to find them on your site. Any advice you could offer so that I can make this an easy and enjoyable trip for her would be very much appreciated. Thank you again for sharing your experience. I can only imagine the countless people you’ve helped as a result. God bless, Amy