SJAS
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Mike Evans
in GRIEF
Mike will be another light which joins with all those who have gone before and all those still fighting and will eventually bring the answer out from the darkness. My deepest condolences to his whole family.
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Thank you all for your support during this difficult time. If you would like to know a bit more about Steve, I have attached his obituary.
http://www.legacy.com/pressdemocrat/Leg ... d=15517748
His service turned out beautifully and was opened by Led Zeppelin's "Stairway to Heaven," just as Steve kiddingly requested. Leave it to Steve to bring rock & roll to an old historic church!
Joyce, Alex & Scott
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Dear Friends,
Another traveller on this road has laid down his burden.
Steve's journey here came to an end at 4:30 a.m. today. He left in a manner so typically Steve - with care and concern for his family - picking a time when most had gone to bed and I had drifted off briefly next to him. The final lesson he left with us is that death is not something to be feared, but really is a release and a letting go and peace. He left with almost a slight smile on his lips.
We have spent the day in tears and laughter as we reminisced about all the wonderful things Steve brought to our lives. We know that he will still be very much a part of everything we do. True to form, when asked what music he wanted for the service he said "Led Zeppelin." He gave us laughs right to the end.
It was Steve's desire that I continue the fight and so we shall with our "Shine a Little Light on Lung Cancer" event. Our lighted ribbon will have deeper meaning as we think of the man who was the light of our lives. Lung cancer may have taken another casualty, but in the end, with all of us fighting, we will take the war.
We want to thank you all for the wonderful support you have given us during Steve's illness these last couple of years. Like someone once said, "Lung cancer isn't for wimps." Steve was sure no wimp about it, but I certainly have had my moments and it was your support that helped see this family through this monstrous disease. Your kindness and warm caring touched Steve deeply, giving us all strength to make it through the hard parts.
With heavy hearts, damp smiles and love,
Joyce & Alex & Scott
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Thank you all from the bottom of my heart. There is no more amazing group to be found anywhere. Your words of comfort have done so much to soften the pain. My gratitude always -
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Just wanted to take a moment to update old friends and welcome the many who have joined the board since I have been able to be very active. Two days ago Steve was returned home from the hopital by ambulance and hospice begun. His care is extensive now.
I just want to say a word to all of you fighting cancer. Please do not let this sad turn in our road cause you deeper concern about your path. Steve began this journey with more cancer than many people have at the end. That he was able to walk out of the hospital two years ago was a miracle in itself. I truly believe that the answer is closer than we might imagine and we will see the day when this is a highly treatable condition. This is what will keep me in the fight. Although the answer was not here for Steve, we can work to find it for you, and my children and your children.
Thank you to all who have been so supportive in our journey.
Joyce
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Happy to hear that Charlie has this option and hope all goes smoothly.
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Fay,
I just popped in and caught your post. Well, that is just so frustrating. I am so sorry you are having to go through all of this and will keep you in my prayers.
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Steve had the same pleuradesis right after dx two years ago and it has worked beautifully. A friend had it done 30 years ago (for different problem) and has no residual ill effects. Steve only notices it once in awhile with a hard cough or sneeze. All the best to you with the procedure
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Thank you all for your kind words and support. I can't tell you how much it means to me during this very dark time. I look forward to a time when things are better and I will be able to catch up with all of you. The power in this group is palpable - sending more strength than I've had all day. Thank you so very, very much - my love to you all.
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Hello to Everyone,
My apologies for the quick "hit & run," but wanted to touch bases in the 5 min. I have. Steve is having a very difficult time. The Alimta treatment has left him in an extremely weakened state and pain has forced him back on morphine. In my moments of panic, he reassures me and says it's just the chemo and he will get through it. He still is trying to help with the advocacy work.
Our local support group got up the web site(which my son threw together between digging ditches to replace our failed well pipe!), so Steve is proud of that. If you get a chance, look at the lighted ribbon on this link:
http://www.shinealittlelight.org/
We are hoping to get this to spread across the U.S. as a way to draw attention to LCAM. The lighted ribbon is simple to incorporate individually or as part of an event. (Anyone is welcome to use the "Shine a Light on Lung Cancer name.) We sent out an e-mail to all our friends and family with the link and asked them to put up a ribbon in November and also pass the request on to everyone they know. We're receiving a lot of positive response.
We are going to get through this, or at least put up one &*$# of a battle. I keep telling Steve we're going to make lung cancer sorry it picked on him!
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(((Peggy & Mike)))
I am so stunned, I can't breathe. I haven't been on so had no idea that things had taken this severe turn. I will pm you immediately. My heart is breaking...
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Peggy,
I am in shock. I will send you a pm.
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Wow Pammie,
I just love to pop in and see such good news. Congrats to you all
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Oh Wow Peggy - what a wild ride you've been on. I know it's a fine line to walk to try to keep our guys safe and yet not take away their independent will that has done so much to get them through this. Glad Don relinquished the keys before you had to "take him to the mat!" Sending my love and prayers.
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TAnn,
For several weeks before Steve's original dx, he was experiencing severe face pain which the doctors were trying to treat for sinus infection. Later the doctors said that they thought it was a reativation of shingles which he had many years ago. They told us that it can resurface when the body is stressed and the immune system weakened. It is awful. Hope you're better soon. (By the way, it was finally improved by acupuncture!)
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Melanie,
Add me to the "Melanie is Awesome" Admirerers Club. (We're working on our cheer right now
). Steve had such an awful time with WBR - I can't imagine having to follow that up with brain surgery.Don't beat yourself up on the WBR - you probably didn't have any other real options. We initially refused it after Steve's original 4 brain lesions were resolved with chemo. The next MRI showed about 13 new brain lesions. In our discussion with the radiologist, we told her about all our concerns about WBR. She told us that while all the other effects were real possibilites, she could promise that all those things WOULD happen if we did not treat the brain tumors.
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Thank you so much for all your caring and support. It really does help a lot. Here's our disappointing results. It turns out that Steve does not have one/two liver mets. His left lobe is completely gone (atrophy from the cancer??) and his right lobe has multiple lesions. So RAF is not a potential at this time. If we are able to reduce the number of lesions with some sort of chemotherapy, RAF or Cyberknife might be possible down the line. It was devastating news, but we are now pinning our hopes on Tarceva or possibly Alimta. It was a rough day.
The upbeat part of our day was that we stayed in SF for a meeting called "Together Facing Lung Cancer" at UCSF. The featured speaker was Dr. Jimmie Holland from Memorial Sloan-Kettering discussing her new book "The Human Side of Cancer, Living with Hope, Coping with Uncertainty." She was very encouraging. We were all given a copy of the book. There will be 7 of these sessions around the country and I would encourage you to go if there is one near you. It was also wonderful to meet the staff of Lung Cancer Alliance since they are one of the co-sponsors. We needed some hope after this a.m.'s appt. so this was really helpful. It's time to pick up our swords and shields and jump back in the fray!
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Mom is gone
in GRIEF
Melissa,
I am so sorry to hear about your mother. I'll have you in my thoughts and prayers.
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Peggy,
It's such a roller coaster ride with the meds isn't it. One moment you think you've got the answer, then the next thing you know the rug gets jerked out. So happy to hear that Don didn't even need it at this point - that really brightened my day which was a much needed lift. Hurrah for Don (and Peggy too, of course - ((((Don & Peggy))))
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Just wanted to pop in and apologize for doing it so infrequently these last few months. Two jobs, two teenagers, Steve's constant health challenges,lung cancer advocacy and helping out with elderly relatives have taken a toll forcing me to really cut down on my computer time. I know you understand because we're all facing similar challenges, but I didn't want you to think that I just didn't care anymore.
Steve's cancer has returned in the liver so we are moving to Tarceva, possibly Alitma and have an appt. for an evaluation for RFA in San Francisco. His health is pretty compromised so I'm not sure how much more chemo assault he can tolerate. However, he remains determined in his resolve. He also is still treated by a retinologist for the bleeds which seem to be relentless in his retinas. He again tested legally blind today, but there is still hope that more vision will return.
Hoping that things are going well with you and that I can get a bit more time to check in with you more often....
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Peggy,
We just got back and I popped in quick just to check Don's progress. I'm so thrilled to see that things apparently went well. You both are in my prayers as always.
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Hope the Cyberknife works out - got everything crossed, just like your cat's eyes
We live about 50 miles north of SF in Sonoma County and we do love it here. If you ever get out this way again, let us know. -
Steve had 2 thoracentesis before he was fully diagnosed (over 6 liters of fluid). Once he was dx'd he was hospitalized for about 9 days with a chest tube to drain all the fluid out before the talc procedure. The chest tube was the bad part, the pleuradesis was a piece of cake and worked beautifully. There was a small area of the lung which never reinflated, but he has had no problems since the procedure - no breathing problems at all. I also work with a woman who had the procedure done about 20 years ago (not lung cancer) with no problems at all.
One interesting note. Steve had an ER visit due to heart issue (probably a result of some damage done by the huge amount of pleural fluid - it was pushing on his heart). They did an x-ray and the ER doctor called a pulmonary specialist when he saw my husband's left lung fully opaque. We said "Oh, that's just from the talc procedure. Did see people still looking at his x-ray when we left
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Hi Leslie,
I just found this website and submitted a question yesterday afternoon and had an answer this a.m. We're checking into Cyberknife for liver mets. Very informative place to go for cyberknife info. Good luck
). Steve had such an awful time with WBR - I can't imagine having to follow that up with brain surgery.
Wesley Olson (FIL of Kathi)
in GRIEF
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Kathi,
May the heartache that is life with lung cancer, now be replaced by the many wonderful memories that remain. I am so very sorry that you and your husband have had to go through this again. My thoughts and prayers are with you.