Loss of another dream...

iVillage Member
Registered: 03-26-2003
Loss of another dream...
11
Fri, 11-28-2003 - 4:18pm

We got to spend our morning at Vandy today getting blood drawn and watching a video for the new medication they are giving Devin. The doctor has recommended he take Thalimode which was pulled off the market for years for causing

"I do not want to be a princess! I want to be myself"

Mallory (age 3)

      &nbs

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iVillage Member
Registered: 10-16-2003
Fri, 11-28-2003 - 5:36pm
I am so sorry...

 

iVillage Member
Registered: 03-29-2003
Fri, 11-28-2003 - 6:26pm
Devin sounds like a remarkable person. I can't believe how hard he is fighting, and how much stamina and will he has. His strength of character must make his illness seem that much sadder to you -- a guy like Devin should be winning the Tour de France, not lying in bed sick. But I can tell from your posts that he must have lived his life with tremendous passion and gusto up to this point. He's lucky to have a wife who gets that about him so profoundly that his strength is obvious to anyone who's read any of your posts. I'm sure that's not much consolation, but it's something.

Hang in there. I know it's just awful for you. His iron will must also make his irrational thoughts and tantrums even more difficult to deal with. I hope the thalidomide makes things easier for him, and for you, too.

Congratulations! I'm so happy to hear it. I just heard the good news and popped back over, just in case you were still checking in.
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iVillage Member
Registered: 06-26-2003
Fri, 11-28-2003 - 6:26pm
Oh Kristi! {{{{{{{{{{{{hugs}}}}}}}}}}}}}}} Big hugs.

April

iVillage Member
Registered: 03-26-2003
Fri, 11-28-2003 - 8:26pm

Thanks! It is so hard sometimes because he wants to do so much. He can finally work out again but he is mad because he has to use the "old people's" machine and he can only work out for about ten minutes then he is exhausted.


He has been talking about doing some more marathons and triathlons this summer. I just bite my tongue. He has got to dream and dream big. He didn't do his first marathon until after his first chemo treatment. It is utterly amazing to me. I don't have that kind of drive. My heart just aches for him. It really does. It is so unfair to see someone struggle so painfully and so long when they are young.


I lost him today at Bi-Lo. I was scared to death because he was pushing one of the car carts without his cane with Alex inside.

"I do not want to be a princess! I want to be myself"

Mallory (age 3)

      &nbs

iVillage Member
Registered: 03-26-2003
Sat, 11-29-2003 - 8:27am
Aw, Kristi, I'm so sorry. I know a little of what you are dealing with on the unclear thinking front - my grandfather (who had also been extremely healthy) had cancer which metastasized to his brain several years back. It rapidly became much more difficult (physically and emotionally) to deal with the disorientation and paranoia he developed than with the resulting physical problems - I hope you have help in the house with you at all times - especially because Devin is a big guy and you also have small children to care for at the same time.

I wish none of this were happening to you all . . .and I applaud you for being very careful to safeguard your own future as best you can.

iVillage Member
Registered: 03-25-2003
Sat, 11-29-2003 - 9:04am

You might want to check and see if the hospital has a pharmacy.

iVillage Member
Registered: 06-27-1998
Sat, 11-29-2003 - 11:22am

You guys sound like remarkably strong people.

PumpkinAngel

iVillage Member
Registered: 12-29-1999
Sat, 11-29-2003 - 2:53pm
((((Kristi)))) I'm praying for you guys. Hang in there--Christi
iVillage Member
Registered: 03-26-2003
Sat, 11-29-2003 - 9:39pm

Luckily he hasn't gotten violent which can happen. Physically, he is quite weak so he doesn't have the energy. Unfortunately, he does have a mean tongue on him. My group at Gilda's said I shouldn't say anything when he gets going but I don't want the kids to think it is allright to talk to me or any woman that way-regardless of the situation. I have learned to somewhat block it and realize it is not him talking-it is the pain and the anger and the scaredness and the damn tumors. He always apologizes later and he has not done in front of anyone-just his mother who was rather terrified because I told him I would not get him a drink until he apologized. I don't think she does that to him at all. She just lets him rant.


Anyway, that is the tragedy of brain tumors. They make the person less-physically and emotionally. It is quite pitiful. He can not have a conversation anymore because he loses track. I think he is having trouble with vision. The irony is that everyone sees him from a distance and thinks he is doing wonderfully compared to two weeks ago. Only I know the truth because I see him day in and day out.


I don't have anyone here at night. I think we will get to that point but hopefully hospice can come in at that point.


Thanks for understanding!


"I do not want to be a princess! I want to be myself"

Mallory (age 3)

      &nbs

iVillage Member
Registered: 03-26-2003
Sat, 11-29-2003 - 9:50pm

Kristi:


You are thinking along the right lines.

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