Hi,
I don't know if I told you that I was having a PEG tube put in last week, but that did not go well. I was trying to have it done under sedation and my oxygen level dropped so they stopped the surgery and I am doing it tomorrow under anesthesia. So we will see how that goes. I am now under the impression that if a doctor does not have something nice to say then they just need to shut up. People who have made it as far as you, I and others now the real deal. We know all the facts and what statistics say. We don't need them telling us this not usually successful. We already know that! I am a 20 year veteran of this stupid cancer. I think I probably know more than most of the doctors.
Okay enough about that. I start chemo and radiation therapy next week and have been told that my skin is so thick from previous radiation that it should not get any thicker. Doesn't that sound appealing?
I do have one question for you and anyone else. How did you handle this with your kids, just how much did you tell them? I have three boys, 8, 11, and 17. Of course the 17 year old pretty much knows everything. But what about the 11 year old. How much do I tell him? My 8 year knows very little and I don't plan on saying anything unless he asks. He is too young to understand. But the 11 year old, Garrett, over hears conversations and understands a lot of the technical terms. So now he is scared that I will be sick and die this year. And while that is possible, he should not have to live with that fear all the time.
On a lighter note it is only by faith that any of us can deal with all this pain, grief and too much reality at one time. My faith has brought me much comfort through my friends and family.
Thank you for all your support, this is one time I feel so alone. My poor husband tries, but he cannot comprehend what is going on inside me and nor can I comprehend his side.

By the way I just wanted to let you know that all my doctors are women. Flirting is hard for me, but the jokes keep coming about my new voice being that raspy, sexy voice all the men love. Of course they have to deal with the funny breathing between sentences. Also if everyone new about our new diet system, get cancer, have chemo and radiation, drop 50 to 60 pounds.

My heart goes out to you all,
Leann

Telling the young ones is tricky &* i think everyones kids are different.
I have none (yet) But had to tell my little sis who was 10 at the time.
I said "Holly, you know all those terrible nose bleeds i've had? Well, they've found out what's wrong with me. I've got cancer. Now that doesn't mean i'm going to die. But it does mean the doctors have to make me quite poorly before i can get better. Do you want to ask anything?" She said (bless her, "will you have to have an oxygen thingy" . I said "no". & "will you die?" I said no- the doctors don't think so.
She was great! She's a very bright 10yr old & handled it well. Then as treatment went on, any questions she had i answered in a simplified way.
She then at school, had to do a Power Point presentation & she chose to do it on cancer. Taught all her school friends a thing or to!
Give them more credit than you'd think!
As for the diet plan - i had a mean old man make nasty comments about me being a size zero (i'm not now) i said- yep, you too can be skinny like me, just get cancer! Better than weight watchers, except you get a life time subscription!
Good luck Leann,
Michelle

Hello,

PEG tube is in and I am home from the hospital. Didn't realize this would hurt so much a first. Mostly it is the gas. Breathing hurts somewhat, but the doctor says that is because my tube is a little higher than most of them and more in the center than on the side.
Okay I hope this is easier than the NG tube I had. The one thing I have noticed is that the top of the tube has to be on super tight or it just blows of and my stomach stuff just blows out. While it was scary at the time, HOW COOL! I didn't realize there was so much pressure on the stomach.
Okay, Ananth give me any advice you can on this PEG tube stuff. I start radiation this coming Tuesday and I am assuming Chemo starts then too. Wish me luck guys. Even though I know God is with me, you guys a needed too.

Lot of love to you all,

Leann

Hello Leann

It is helpful to use your mind to lessen your awareness of bodily discomforts. A useful technique you might helpful:

The Relaxation Response
===========================================
1. Lay down on your back with the palms of your hands on your abdomen.
2. Close your eyes and breathe in slowly and deeply through your nose.
2. As you breathe out slowly, feel yourself beginning to relax; feel the tension leaving your body.
3. Now breathe in and out slowly and regularly, at whatever rate is comfortable for you. You should feel your abdomen rise as you breathe in and fall as you breathe out. (abdominal breathing). Do this for a couple of minutes.
4. Become aware of your breathing. As you breathe out, say the word, "ONE" (or a spiritually helpful word), silently to yourself. Breathe easily and naturally.
5. Continue for 10 to 20 minutes. You may open your eyes to check the time, but do not use an alarm.
6. End with a slow deep breath. As you breathe out say to yourself "I feel relaxed.""I feel peaceful."
You can also use this technique to help you get ready for sleep, then you tell yourself, "I am going to get a good night's sleep".

Do not worry about whether you are successful in achieving a deep level of relaxation. Maintain a passive attitude and permit relaxation to occur at its own pace. When distracting thoughts occur, try to ignore them by not dwelling upon them and return to repeating "ONE." With practice, the response should come with little effort. Practice the technique once or twice daily, but not within 2 hours after any meal, since the digestive processes seem to interfere with the elicitation of the Relaxation Response.

- The Relaxation Response, Herbert Benson, M.D.
(based on an investigation of yogic breathing practices)
===========================================

Thinking of you.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Okay guys this realy hurts. How long does it feel like this. I had it put in on Thursday and today is Sunday. Everyone made it sound like the pain would be gone by now. I am hurting, really hurting. This worries me because I start radiation and chemo on Tuesday and I was hoping this pain would be gone before I had to deal with that pain.

Mine hurt me for about 2 weeks.
I had it put in 2 days before i started R/T & getting on & off the bed was sooooo painful. Because i'd been so sick through chemo my stomach lining was enflamed. And apparently my liver's in an 'unusual position' so the tube fitting took 2 hours + instead of half an hour. It was horrific!
BUT it does ease up. & trust me, when you start R/T & chemo you have other things to focus on!

Hi Leann,
I had my PEG fitted on Monday the 20th and I had already had 14 RT sessions and 4 Chemo trips, on the day of the PEG Operation I had my 15Th RT, boy was that a doozy of a day< However I was lucky with my PEG (even though it is high)I havent had a great amount of pain (I have hadsome periods where i think i am going to burst but I don't so thats a plus)I have only hadit in for a week and apart from being a little depressed during meal times (when everybody is noshing on real food) I mange to keep focused,So hang in there girl and keep us informed, I am writing a Diary and am keeping up to date with it, and will try and work out how to post it in "My Story" section.
Stay Strong
Love Trev

Trev,

I have some drainage with mine too. I have called the doctor for fear that I have an infection. I don't know if drainage is normal or not.
thanks for your help
Leann

Hey just wanted to update everyone and thank you for the advice. My PEG tube is much better and I am getting used to wearing clothes around it. I don't think doctors take into concern that women wear bras. LOL
I have had 24 rt treatments, 2x a day and 3 chemo. So far I have been very lucky with chemo and have not been nauseated. As for rt, the side effects have really just kicked in. My throat feels horrible, I cannot take the mouthwash because I have a problem with my vocal cords and the lidocaine slips down my airway. So I am just having to deal with it. But you know pain reminds you that you are alive. And that is still a good thing, right?

Drainage with my PEG has all but stopped, it only hurts now when somehow I manage to tug on it with my bra or shirt.

Thanks everyone for all your advice and help. This to shall pass.

Leann