Hurry up and wait......

mikesmom01

Hello everyone. I had a few minutes so I thought I'd post an update and catch up on some others as well.
My son has completed his radiation, and will begin his 3rd round of chemo next week on Monday. This time they're adding a "pill" to the cocktail. I don't have the name of it yet tho. Tomorrow morning he's having another endoscopy done, so we'll have pictures to compare with the first one which actually diagnosed him in the first place. We'll have an idea if this treatment is working or not. Then July 7th he's to have his G-tube reomved.....hummmmm. I think he must have requested this himself, not sure.Somehow and from what I've gathered from others, this is probably not the best idea. The next PET is not going to be until the last of July or first of August.
Last week Mike told me that his onco. mentioned the "hospice" word to him. It was said that when the time comes, he'll let him know and get it all set up. This bothers me!!! He looks so good right now, still has all his hair( so far), color is good, etc.... Am I fooling myself, thinking he's not as sick as thet say?? Am I not being realistic enough? How does a mother think positive, believe in a miracle, pray, pray, pray, and also be real about what is happening?? I wish I knew how to balance these feelings inside me.The onco has also told him that his progonis looks like it may be by or before December. I cannot wrap my head around that at all. Everyday I feel like I'm missing out on precious time with him.
I know all this sounds normal for here, but thank you for letting me get it out at least. That was my first real rant on here but I can assure you, there'll probably be more.
I do continue to keep all of you and your loved ones in my daily prayers, and I think of you often.
If you are new to this forum, read, read, read. You WILL find alot of comfort, solice, and many friends here.
Martha

Betty in Vegas

I would imagine
That the pill is Xeloda. Be prepared that it is really harsh on the tummy...and if he struggles with it, it's the pill form of 5FU which you can get in an IV form, and does not usually cause those problems.

I think docs today are way too fast to give up and use words like pallative and hospice. I think when the time comes, there is a lot of time to talk about that...while you are doing well is the time to have you go LIVE not think about death. Do the docs think about death all the time? The truth is, we are all terminal. When is the only question. I think when it is time, then we talk about those things. Until then, we fight.

We have a lot of defeatist docs out there...Really--why treat anything because sooner or later, we all die. Why not just give right up? Because today there is HOPE and I think docs should do more to provide hope.

But that is just me. And my opinion. So I understand your frustration. Totally.

Betty

iansmom

Second Opinion
Hi Martha,

I know you have been trying to get Mike to a second opinion. I believe that he needs to find a doctor who has a positive perspective on Mike's prognosis. Ian's oncologists have only mentioned palliative care and they are not finished looking for chemo regimens to combat the cancer. With Ian its more about staying healthy and active enough. His body seems to be handling this,,,his blood counts are always good but his weight is problematic. He just has no appetite and he is always so tired.
As I said to you yesterday I don't think it would be helpful to remove the G-Tube. I asked Ian about this and he doesn't think its a good idea right now either. What if they are wrong and the chemo and radiation does make surgery possible. They never ruled out surgery on Ian until after the adjuvant therapy and the PET scan. His surgeon trained at UPenn and was able to do the MIE even though he was not a candidate at his initial diagnosis.

Ian's J-tube fell out a few weeks after surgery and they had to go back in to replace it. It was a set back so Mike should think twice about removing it, especially if his doctors are prognosticating such a dire outcome.

Oh Martha, I know how you feel. We brought these boys into the world and we can't bare to watch them have to go through the mental and physical anguish. You keep on doing what you can to get him to see another doctor please...I asked Ian about talking with Mike but he said he didn't really feel ready to talk. But I will gladly let Mike know how a mother feels watching her child go through this. I will ask Ian again to talk with Mike. He is finishing up chemo next week and then we go through the agony of waiting for the results of the CT scan to see if there is any further spread. I hope you finally got that book and please read about the 22 year old guy,,,its very inspirational...

Take care of yourself too....I'll send you a picture soon.
Laura