SJAS
-
Posts
574 -
Joined
-
Last visited
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by SJAS
-
-
-
Dr. Joe,
Due to our changed situation at home with Steve's vision loss, I have only been able to get online rarely and for just a few minutes, but I had to reply to this. I am heartbroken over your departure. When Steve's vision so suddenly deteriorated, you were very quick to reply with a possibility that no one had thought about. Thank God Steve did not have that, but let me tell you that you made a top group of oncologists sit up and take notice. They thought he fit the profile too. They took it so seriously that this is what happened:
I talked to the oncology center emergency line at 7 p.m. The doctor had pulled his file and was conferencing before the office opened the next day. Even though the hospital which carries our insurance had a broken MRI, they sent Steve to a private center by 1 p.m. the same day. That would never have happened if they thought your concern was baseless.
The point is that even though Steve did not have that particular condition, if he had, it could have taken his life. Some other person who might have that condition might be lost if they don't have the benefit of someone like you thinking "outside the box."
Please know that you make a huge difference in people's lives. Thank you for having the heart which brought you here in the first place.
-
Cyndy,
Your peace just emanates through your post. What an incredible man Tim was and what a remarkable tribute. Thank you for sharing a bit of him with us.
-
Jennifer,
Sorry I don't have any answers, but if there was ever a need for a strong advocate, this sounds like the time. When Steve wasn't getting the help he needed, I kept talking to people and finally got someone to listen - the nurse who had known us for years. She talked to the doc and things got done! Nurses can be powerful (thank goodness for all you nurses out there!)
-
So grateful that you are fine. It's strange how things work out sometimes. Take care.
-
Great idea Lisa! Funny, even though we live in an area which is steeped in alternative medicine and lifestyles, Steve remains pretty traditional (except for the acupuncture which did help his face pain). He did hear somewhere that dark chocolate was a good antioxidant and that was right up his alley. He now talks about having to "take his medicine," and he's off to the candy section. If there was ever a trial for that one, he'd be first in line
-
Thanks for all your good wishes and prayers. Ginny, your friend gave us such a laugh. Waste not, want not, eh. HA! Wishing you all a wonderful holiday and a bright 2005
-
Add my cheers to everyone else's! You just keep on keeping on and giving us all hope and many reasons to smile. Happy - happy holidays.
-
Cathy & family,
I am so sorry to hear of your husband's passing. Hopefully, you will find comfort in knowing that he was home where he wanted to be and what a beautiful homecoming his family made for him. Sounds like he was so at peace, that he could finally rest. Prayers for you all.
-
Yep, everyone's response is different, but it seems like most people don't have the horrible nausea that used to be fairly standard. They have wonderful drugs for that now. Fatigue seems to be a pretty common factor.
The weight loss can be an issue. The doctor told us to give Steve whatever he would eat. Also, there are some good cancer cookbooks available that give hints on how to cope with side effects that can alter one's appetite. Keep an eye out for acid reflux too. The symptoms, at least in Steve's case were not at all what you might expect. Once Steve started on medication for it, his weight problem really improved.
-
Rich,
Sorry, haven't got a whit of worthwhile advice for you, but just wanted you to know I'm thinking of you and sending prayers your way.
-
Just to have NED around is such a blessing. Here's hoping that the Tarceva was really not needed at all.
-
Hello all,
Again my apologies for not keeping up on the board very well. My time has gotten even shorter as I try to take care of all the tasks Steve can no longer see well enough to do. (Heaven help us as I take over the recordkeeping
) Steve had his first laser surgery on his right eye today to see if we can stop further damage from the radiation. Both retinas are swelling and bleeding and there are new blood vessels forming in the front of his eyes (not a good thing). His left eye will be done next Thursday.It's looking pretty doubtful that much vision will be restored at this point. Most of the world is a pretty blurry place to him - still no ability to read or discern anything other than a few vague shapes on TV. He still has his sense of humor though. He's now adding limited vision jokes to his chemo, baldness, radiation repetoire.
Even with all this going on, I still feel that we are so blessed with how much better Steve feels this Christmas. At times last year, I wasn't even sure he would be here for the new year. We took a beautiful walk today - (hmm, better make that an invigorating walk -Steve misses out on the beautiful part!), holding hands and chatting away. It doesn't get much better than that
-
Peggy,
I'm just getting to this because I have very little time on the computer nowadays. Please don't ever think you have to apologize for good news. It is one thing so vital to keep us going. I LOVE YOUR GOOD NEWS! Hurrah, hallelujah and just about every other song of celebration going up. This was a Christmas gift for all of us.
-
Add one more prayer to the chain. May good health catch up with you both very soon!
-
A special Merry Christmas to a very special couple
-
Thank you Lily and a very Merry Christmas to you too
-
All the best to you too Cheryl!
-
And a very Merry Christmas to you too Annjael!
-
Hi Bo,
Just one more thought. If they can't put in a port during chemo, maybe you could have a PICC line put in. Steve has had two - one for four months, then removed for two months, and then a second put back in for six months when chemo was restarted. You have a small tube protruding from your forearm, which is easily covered with a sleeve. The downside is that it must be cleaned and redressed weekly. The upside is no pokes at all after it is installed and no vein problems. Steve was really happy with his. (He had been scheduled for a port installation the second time but was too ill for the surgery.)
Re: scans. Steve has had multiple CT's, MRI's, and two PET's. We were told that the CT's were best for identifcation of tumors, but the PET's would show if they were actually alive or simply necrotic tissue. We were also told that PET's were not good for brain tumors - hence the need for repeated MRI's.
Good luck.
-
Sharon,
I am so sorry for the loss of your father, but at the same time filled with joy and hope over the "gift" he sent you - really a gift for us all. Thank you for sharing such a special moment with us. I certainly will never forget it. It makes me think of "Clarence," the angel in "It's a Wonderful Life." Prayers for you all.
-
Glad you're home safe and sound Sandy. Sending prayers and good wishes that your trip postscrip is a perfect PET scan!
-
Thanks Addie & Peggy for being there for me. We're still waiting (me - not very patiently
) for retina angiogram results. I've read menus at restaurants for years for a blind friend, but it sure feels strange to be doing it for Steve. He doesn't complain at all though. I'm just so lucky to have him.Peggy, I'm so sorry about your husband's coworkers. His entire workplace must be becoming very cancer aware and sensitive. That bond is so real and so strong. We certainly feel it with all our friends and family who have gone through it. I hope for happy endings for all their treatments.
Had a long break between jobs, but not long enough to go home so went to the mall to walk. I haven't been there in ages. Felt so weird walking around seeing people busily Christmas shopping. I felt like I was the Ghost of Christmas Past, walking around watching how things are when cancer isn't in front of you every moment. I didn't feel jealous, just like a totally remote observer. "Humm, that's what life used to be like...."
-
What a week this has been. We are still waiting for the results from the retinal angiogram to see what, if anything can be done to save Steve's vision. The good news though is that, thanks to Dr. Joe, Steve was sent for an emergency brain and orbital scan to rule out a possible cavernous sinus thrombosis (you don't even want to read the description on that one!), and it came back that he doesn't have it.
Thank goodness for Dr. Joe - Steve fit the profile almost perfectly and if he had it, it would have required immediate treatment. (The docs here really sat up and took notice on that one!) Sooo, we still don't know about the vision, but hopefully will hear soon.The sorrows: A student I work with told me his 27-year-old cousin, married just 4 months ago, has metastatic lung cancer. A new nurse in the doctor's office today told me she lost her 14-year-old daughter to lung cancer shortly after 9/11. A young mother in our church who recently celebrated 5 cancer-free years, just found out that her melanoma has returned and is throughout her entire body.
Feels like cancer is surrounding us at every step of the way!
) Steve had his first laser surgery on his right eye today to see if we can stop further damage from the radiation. Both retinas are swelling and bleeding and there are new blood vessels forming in the front of his eyes (not a good thing). His left eye will be done next Thursday.
) for retina angiogram results. I've read menus at restaurants for years for a blind friend, but it sure feels strange to be doing it for Steve. He doesn't complain at all though. I'm just so lucky to have him.
some good news
in GENERAL
Posted
They always say the best presents come in small packages
!! So thrilled to hear your good news. What a terrific way to begin the new year. Now that's a real "Extreme Makeover" 