SJAS

Rich, Don't sweat the baldness. Now when we see someone who shaves their head, we snicker and whisper to each other, "Not a true baldie - just a wannabe!" Steve is still working on the "rat tail" from the one spot at the back of his head that survived WBR. You can find a lighter side (sometimes no ear/nose hair Best of luck in your treatment.

Kitty, There are no words other than to say how sorry I am to hear of your father's condition. I pray for all of you.

Tina, I tried to respond a couple of days ago, but my computer is having "issues" (and we thought we were the only ones ). Here's a second try. June 25, 2002 was our 25th anniversary, but since Steve had been caught in all the high tech layoffs out here, our long dreamed of special trip (I was thinking cruise) was out of the question. I was feeling pretty sorry for myself (I can whine with the best of 'em.) Then when I pulled into the garage after work, there was Steve standing with a little 2-person kayak for our anniversary "cruise!" Some cruise - we paddled ! This year Steve was too sick for us to celebrate. That 25th anniversary will always be one of my very favorites. I have decided to stop wondering "what if..." and focus on "what is." That way I won't overlook the gifts that are right in front of me.

Ginny, I just got back on briefly after an absence. I was so very sorry to read Earl's "final chapter." You are an incredible woman who obviously surrounded Earl with love. I pray for comfort and peace for you both.

Paige, Sending you my deepest condolences and prayers for strength and comfort.

Just wanted to send you an "'atta girl!" for getting thru Phase 1. Also hope you'll give a second thought to Mr. Ry's suggestion about the port. They make a huge difference. Or if that seems like too much, maybe look into a PICC line like Steve has. That was used for all Steve's chemos, blood transfusions, his constant blood draws, etc. It's really saved his veins.

Roanna, Sorry to hear the news about Wayne, but glad no brain mets at least. My memory is a bit fuzzy, why is Wayne not a candidate for chemo? Steve had cancer in all those places, plus bone & brain mets and he has had chemo and is now on Iressa. Nothing wrong with getting 2nd, 3rd opinions not only from a different doctor, but also a different medical group (heard that sometimes docs within the same system are reluctant to contradict each other). Just seems like you're not getting many options.

Tina, I sent letters to every congress person from my area several months ago, also President Bush, Mrs. Bush (First Ladies need to have special projects, right ), Governor Arnold (yes, we do just use his first name - who can spell his last!!). However, I think it's time for an update, so count me in on some more letters to Californians. I also recruited family members in other states to write letters or e-mail. People kept asking how they could help and I told them that this was one way. I e-mailed them names and addresses of their reps and some possible form letters. I used facts from the Alcase Statement to Congress (http://www.alcase.org/advocacy/alcase_washington2.html) and an excellent article from Nov. 30, 2003 Atlanta Journal "The Outcast Disease" (everyone I show these to are speechless). Then I added a bit about our own struggle. If anyone wants a copy of some of the letters I sent, just PM me. Just had one more thought. Years ago during our fellowship hour after church, we would have a table set up to write letters for Amnesty International. We would have some form letters people could just sign, or writing paper for those wanting a more personal appeal. Why not do something similar for lc in our religious settings or social/service clubs?

Cat, Congratulations on having the willpower and determination to make things happen! You are an incredible role model for all.

Angie, I totally understand how you feel. Tonight after logging on and finding out about David, I said, "That's it! No more." But I'm still here right now, so who knows. I can't say how I'll feel tomorrow. Your dad is going through such a tough time now and you're with him all the way. Turn your energies and emotions in the direction which can best help you. We all care about you and will keep you in our prayers.

I am so sorry about all the struggles you have to deal with at the same time. Any one is more than enough. I agree, that you must dig deep and make your decision. The only advice I will add is something our onc. told us when we were being pulled in two totally opposite directions about the brain tumors (oncologist vs. brain surgeon). He told us that we had all the facts and that it was now up to us to make a decision and not look back. There is no way of every knowing that if you had gone in the other direction that things would have turned out differently. Thinking of you.

Sounds like you've nabbed the monster with his toe in the door - now let 'em have it big time. Good luck and keep us updated.

Thinking of you both also. I will never forget David's excitement about the party. His "kicking up the post" cracked me up. He was just like a youngster waiting for Christmas. You certainly added so much to the joy in his life as he added so much to all of ours.

Venting is what this place is about and by doing it here, you can keep putting one foot in front of the other. I don't get to all the posts as much as I'd like to either (I especially don't seem to make it to this section much - just too much going on). You don't need to add guilt to your burden. WBR is no picnic. Here's something I posted earlier on Steve's experience. In Dec., Steve was to have WBR. We literally cancelled sitting in the radiation office for the first tx after having done some extensive research the night before. We demanded to see a Gamma Knife specialist and it seemed Steve would be a good candidate. The Tumor Board required a triple-dose MRI and by then Steve's tumors had disappeared from chemo. So all tx ended, but the controversy did not. His onc. and radiologist both wanted him to do WBR anyway prophylactically. The neurosurgeon totally disagreed and said WBR is too major of a step to take unless absolutely necessary. We finally just had to make the decision and live with the consequences. We refused WBR. Unfortunately, by Feb. Steve had 15 brain mets. He then had to do WBR, but we both still have some concerns about it. His health was terribly impacted by the WBR. He was completely wiped out and is still in a slow recovery. I would DEFINITELY read up on both procedures, and see a Gamma Knife specialist. I have read that some places are using CyberKnife for brain mets too. But, the up side is that we know some people who have done very well after it. Keeping them in mind, helps us to keep going. Tell your mother, this is just another part of the journey and to keep your mind focused on the goal of beating this monster.

Paige, Prayers for you and your mom. Keep breathing deep.

(((((Don))))) We're all thinking of you....

Sending prayers for real answers and pain relief for Bob soon.

Maureen, I really can't advise you, but here is my husband's experience (from a previous post). In Dec., Steve was to have WBR. We literally cancelled sitting in the radiation office for the first tx after having done some extensive research the night before. We demanded to see a Gamma Knife specialist and it seemed Steve would be a good candidate. The Tumor Board required a triple-dose MRI and by then Steve's tumors had disappeared from chemo. So all tx ended, but the controversy did not. His onc. and radiologist both wanted him to do WBR anyway prophylactically. The neurosurgeon totally disagreed and said WBR is too major of a step to take unless absolutely necessary. We finally just had to make the decision and live with the consequences. We refused WBR. Unfortunately, by Feb. Steve had 15 brain mets. He then had to do WBR, but we both still have some concerns about it. His health was terribly impacted by the WBR. He was completely wiped out and is still in a slow recovery. I would DEFINITELY read up on both procedures, and see a Gamma Knife specialist. I have read that some places are using CyberKnife for brain mets too. However, I am not saying to rush into WBR. It has been extremely hard on Steve and his level of functioning is still much less than before WBR. Hopefully, he will slowly work his way back, but I don't think we expected it to be this hard and long of a journey. When you have 15 lesions, there is no other option, but it sounds like you still could do Gamma Knife again. Guess I'm making your job harder instead of easier . Sorry.

I feel like someone has just knocked the wind out of me. Maybe it is the loss of all the excitement, energy, good humor and caring that David always brought to this board. It just does not seem possible.... My heartbroken condolences go out to all his family. You will all be in my prayers.

I'm so sorry about your dog David. I hate to admit that I still have the redwood boxes of ashes from my two old dogs (not sitting in plain view at least), but I am a total sop when it comes to critters. (I did bury our pet rat!) They are there for us in a way only they can be. Thinking of you during this rough time.

Getting to this discussion late too. I want to help, but things are challenging here too. I had done lots of letter writing, advocacy things when things were going better. One concern I have is the fragmentation of the advocacy groups. For those familiar with the ADA (Americans with Disability Act), that landmark legislation was only accomplished when all the various groups started working together. If we can coordinate our efforts, we will be much more effective.

Jamie, Thanks for the update on your dad. So glad he's getting to see his beloved Bears - now they better not disappoint him - HA!

Lillian, Thanks for letting us know and best of luck in that new job!

Ry, Thanks so much for filling us in. I sure so miss David A. too and can't wait for him to get back to this board and his Stang.

Your vacation sounds like heaven (got me daydreaming...). Glad you're back though. By the way, what do you DO with a fish that big??? (That's a lot of sushi )