Adrienne had her PET scan this afternoon. These scans have been excruciating since she has to lay still on her back, the most painful position, for a long time. She knows she has to get through it but she sobs the entire time. Hopefully she's done with these for awhile. It breaks my heart to see her go through this but I try to give her a little pep talk to get through it. After today's scan, we went to our favorite pet store about 2 blocks away to see the puppies and to get Moe a new collar. Curt's been sending pictures and updates from Moe each day, definitely a high point.
I don't have the reports yet but I did talk with Dr. O'Connor late this afternoon. He was very positive, which is what we love about him, and said that we're not giving up and she still has options. Obviously, we need to get treatment right away so he's going to try to get her on something either on trial or off trial to bridge her until SGN-35 is available, and he's going to try to get her something on the west coast. We're going to hang around until Monday and fly back home Monday night after seeing him. He promised to have something worked out by then. If necessary, we'll go home for a week and then fly back.
I won't lie...this has been tough but Adrienne is ready to fight yet again. She doesn't start classes for another 10 days so we have until then to work things out. She'll take the semester off if needed. Her birthday is on Tuesday, August 18 and Daniel's is on Wednesday (yep, they're a year and a day apart). We're planning to go to Santa Barbara on Wednesday morning (with the dogs, of course) so we can see Daniel for his 21st birthday (congratulations!!!!).
The biggest issue is to keep this pain under control so that's tomorrow's goal. Right now, she wakes up during the night, sometimes sobbing, until we can get the pain meds into her. I asked about the pleural effusion; it doesn't cause pain but it is causing her some shortness of breath. Draining it will be an issue because it's separated into pieces and hard to get to so there's no solution there yet. I'll post when I know more.
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9 comments:
Thinking of you both. Hang in there. Things will get better. Big hugs and lots of hope from us love
Penny and Andrew
Stopping by to say HI and send along some loving ((HUGS)) to you both. God bless Dr. O....so glad he's in your corner fighting right along side you Adrienne. Have you had a chance to visit with Tiana and Duane while in NY?
Susan
Adrienne/Alison, thinking of you both... I'm so sorry you have to deal with the pain. I too can't lay on my back very long with spinal involvment (t-9 thru t-11). I know yours is probably a lot worse so my heart goes out to you...
Can't wait to hear what Dr. O has up his sleeve for you. Please hang in there and know that there are so many rooting for you!
Wish I was close enough to give you both a hug.
Adrienne, you are one tough cookie and the thought of you sobbing through the pain reduces me to tears.
I'm sorry you have to steel yourself to fight yet again....
Hopefully Dr O's plan will work its magic and let you continue with your studies.
Alison - in awe, as always......<3
((Big Big Big Hugs))
K
Hi, like always you guys are always in my thoughts.
love, deb
Add me to the list of those who are thinking of you, and pulling for pain relief and an awesome Dr. O plan. How can I transfer my AA miles to you?
Love,
Lisa
So hoping for better news than this for you, but what a great doctor to have on your side. Sending lots of good vibes your way.
Karen, Clare's mom
i hate that adrienne is suffering. she is so fortunate to have you as her mom and comforter, her advocate. dr. o is absolutely amazing. i had not heard of him until you mentioned him during kara's darkest days. and well, he has turned her life around! i am confident he will come up with just as good of a plan for adrienne. he is a true angel on earth.
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