Apr 24, 2012 - 8:06 pm
It's strange...your post where you asked how I was doing just....disappeared. It must have been something that the administrators did because as far as I know, we can't remove posts ourselves. I did flag a comment--some sort of spam---that was promoting a facial mask. I noticed that comment was gone, but your original post was still there. Now everything is gone....
Anyway, thank you very much for asking about me and David. I really appreciate it. I hate to post negative stuff, and I hate to think about others who are in this battle reading my posts and being dragged down by what I write. So I feel like it's better right now for me to lay low. I do check this site several times a day, though.
I've been having a hard time. David's condition is not good. In some ways, there have been slight improvements, in others....well, my heart is broken. I've had some really bad days where I could not stop crying for most of the day. I don't even know where to begin. When I think of what I could say, I just start crying again. I do not think that the Avastin and chemo are doing much good. Well, maybe a little....but the little good that they might be doing seems to be overshadowed by David's other issues. I don't know what is causing David's issues....brain swelling? Tumor load? The chemo? Too much pain medicine? The doctors don't know either. They said we need to give the treatments two months before we do an MRI and see if they are helping. If we do an MRI any sooner, the treatments will not have had enough time to work and the MRI will not show any improvements. So once again...the waiting game.
David has a lot of deficits now, but one thing he's retained....his understanding of what is going on, and a solid grasp of his situation. I almost wish he didn't realize what was going on. He has been very depressed. I try my hardest to help him but there is no way I can counter the awfulness of his situation.
I also feel a lot of grief over connsteele's son David. I felt like Connie and I were kindred spirits...our battles were so similar, and we both had Davids....I don't know. I just cry a lot all the time. Also, even though I didn't "talk" much to Todd, the guy with DIPG, I felt really bad when his sister posted that he had died. He had shared his story, and then he said, "and there you have it." Idk....he just seemed really personable and I liked him and I so much hated to read that he had died. My heart is hurting so much, for me, for David, for all of us on this board.
My neighbor two doors down died last week from a recurrence of breast cancer. My good girlfriend's 16 year old daughter is fighting mets to her lungs and brain from osteosarcoma, and she is not doing good. I think I am just overwhelmed. I am considering going to our local hospital and seeing about talking to their cancer support group.
Well, so much for me not writing negative stuff. I've cried through this whole post. I really hope that you and your husband and everyone else are doing good. I love to read posts about how people are beating this beast and having good lives.
Katie, if you are reading this, I just want to let you know that I think of you a lot and I hope that you are standing strong and doing good. I so wanted to write to you and encourage you but I am empty right now and I don't feel like I have much to offer. Btw, there's a pic of my Belgian Tervuren in the Expressions area of my CSN space...you had asked me what that breed looks like.....
One last thing.....I am living my life in a way so that I won't have any regrets about the choices I am making. I don't go anywhere or do anything without considering David first. I don't go anywhere very often and when I do go, I don't go far from home. Just quick runs to the grocery store, pharmacy, etc. If I make eggs and sausage for breakfast and David says he wants donuts, I toss the eggs etc in the trash and we get donuts. If he says he'd like a Starbucks, then I drop whatever I am doing and we go get a coffee. If he wants to go outside at 11:30 at night to eat a messy ice cream bar, then I take off my PJs and I get dressed and we go outside. I told my husband that I will not feel any guilt when David is not with us any longer because I was selfish and did not put David first. I will be forever grateful that I don't have to work right now and I am able to devote myself to David 100%.
Love, blessings, peace and strength to all of you,