› Forums › General Melanoma Community › Update: The Gambler’s Brain Surgery
- This topic has 16 replies, 8 voices, and was last updated 13 years, 3 months ago by
lovingwifedeb.
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- January 14, 2011 at 5:23 pm
I promised you an update…
I promised you an update…
Such an emotional whirlwind these last few days but for many reasons. You will be happy to know The Gambler (Bob) has pulled through his 3 hour surgery with the normal effects, stapels, swelling, pain and mixed up words. His balance, coordination, touch, recognition, etc. all in tack. The doctors is hoping as the swelling goes down the mixed up words will disappear or at least get better in time as that was his only sympton before surgery. Bob is not the best patient as he tries to get out of bed on his own without telling his nurses and gets scolded. Took him awhile to get the hang of doing things "their way". Today is day 3 and after talking with him this morning we have word that they may release him this late this afternoon. Now I just have to keep him off his beloved Harley for awhile…
Bob will have to do the gamma knife in 2 weeks to "clean up" the edges of the tumor area and cells that were left behind so his nuerosugeon told us. I watched a video last night so I would know what he would be facing… didn't look fun but better that WBRT. After that his ONC will probably meet with Bob and discuss his future plans. Since Bob was totally on a nutritionally based program because of lack of options at stage 3c 6 months ago, now at stage 4 he will qualify for other programs maybe? We just don't know yet what his final diagnosis is until after gamma knife is completed and his next doctor's appointment is done. We will let you know…
As far as family goes I think we are all on the same page now. I think there is a balance of giving and receiving hope and understanding the reality of the things that may lie in our future. Bob's oldest daughter was thinking of getting married in summer of 2012 and now she is rethinking her dates. I told her it was a wise decision. I have a daughter who thinks of Bob as her own father, they are very close. How many step fathers have a gift like that? Bob's youngest girl (25) is disabled and she is the hardest one to make understand what is happening. She will be lost most of all. But at least we, as a family are talking about the reality of what's happening with Bob, it is now in the open. This happened in 3 hours of waiting in a room under stress, talking of what it's been like for the last 6 months living with melanoma. This information can not be soft pedaled anymore. It's not in the closest anymore, hidden like a dark secret kept away from the light of day. Part was Bob's fault but part was everyone's denial of what was really happening. Yes, we take one day at a time but our future is changing now, evolving because of this damn disease. Love binds us together as family and Bob is it's key but the fear of losing him should remind us to live more fully in the now.
If you would like to reach Bob personally please use this email:
Deb
lovingwife to Bob, stage 4
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- January 14, 2011 at 5:28 pm
Deb, been thinking of you since Wed. and hoping for an update. I am glad the surgery went well and hope the rest of the cells are wiped out.
I think it's likely there are more options for you; it's all a matter of choosing and weighing quality of life, maybe. That was something I didn't much take into account with Will because the cancer was already making him quite sick and he was rushed into biochemotherapy under somewhat emergent conditions, which further wiped out his quality of life. But you are thinking things through more clearly than I did and it's good that the family is talking.
Wishing you all the very best.
Lori
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- January 14, 2011 at 5:28 pm
Deb, been thinking of you since Wed. and hoping for an update. I am glad the surgery went well and hope the rest of the cells are wiped out.
I think it's likely there are more options for you; it's all a matter of choosing and weighing quality of life, maybe. That was something I didn't much take into account with Will because the cancer was already making him quite sick and he was rushed into biochemotherapy under somewhat emergent conditions, which further wiped out his quality of life. But you are thinking things through more clearly than I did and it's good that the family is talking.
Wishing you all the very best.
Lori
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- January 14, 2011 at 5:49 pm
Deb, thinking of you and Bob, and wishing you both the very best. Melanoma is a hard, ugly road to travel…Glad things are out in the open for you all…Just cherish each and every day, and continue to make beautiful memories.
Take Care,
Sherron, wife to Jim FOREVER
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- January 14, 2011 at 5:49 pm
Deb, thinking of you and Bob, and wishing you both the very best. Melanoma is a hard, ugly road to travel…Glad things are out in the open for you all…Just cherish each and every day, and continue to make beautiful memories.
Take Care,
Sherron, wife to Jim FOREVER
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- January 14, 2011 at 6:43 pm
Hi Deb – I am so glad to hear that all went well with Bob's surgery. My reduction of symptoms after the craniotomy happened over several months and the pain went away over several weeks. I hope his recovery was as easy as mine was!
I also had Gamma Knife and would be happy to share my experience and answer any questions/things I wish I had known before, if it would help. You can reach me offlist at [email protected]
The good news from my experience is that I had the craniotomy last June, Gamma Knife last July, and three follow up brain MRIs have shown no new tumors and the tiny one is now considered to be scar tissue and the great big one shows no metabolic activity and the remaining margins have shrunk by 50% or more.
For me too, it was an odd relief after almost two years at Stage 3b to finally have everyone in my family and all of my friends on the same page. I got so tired of people telling me that they 'just want everything to go back to normal' and having to tell them, 'this IS normal'. At least now no one is ignoring that big old elephant in the room and we can all work towards loving every day we get.
My thoughts and prayers to you, Bob and your family.
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- January 14, 2011 at 6:43 pm
Hi Deb – I am so glad to hear that all went well with Bob's surgery. My reduction of symptoms after the craniotomy happened over several months and the pain went away over several weeks. I hope his recovery was as easy as mine was!
I also had Gamma Knife and would be happy to share my experience and answer any questions/things I wish I had known before, if it would help. You can reach me offlist at [email protected]
The good news from my experience is that I had the craniotomy last June, Gamma Knife last July, and three follow up brain MRIs have shown no new tumors and the tiny one is now considered to be scar tissue and the great big one shows no metabolic activity and the remaining margins have shrunk by 50% or more.
For me too, it was an odd relief after almost two years at Stage 3b to finally have everyone in my family and all of my friends on the same page. I got so tired of people telling me that they 'just want everything to go back to normal' and having to tell them, 'this IS normal'. At least now no one is ignoring that big old elephant in the room and we can all work towards loving every day we get.
My thoughts and prayers to you, Bob and your family.
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- January 16, 2011 at 12:29 am
Hi Deb,
Glad the surgery went well.
When he comes out, make sure he still sticks to the healthy diet and adds other things to make his mind and spirit better. If he is gonna "cheat" on the diet, it's better to take a very small portion of whatever it is and eat it slowly and enjoy it rather than woof down a lot, where you aren't really tasting most of it. I hope that one of the drugs works for him.
Treat the body, mind and spirit well and hopefully things will go well.
Take care.
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- January 16, 2011 at 12:29 am
Hi Deb,
Glad the surgery went well.
When he comes out, make sure he still sticks to the healthy diet and adds other things to make his mind and spirit better. If he is gonna "cheat" on the diet, it's better to take a very small portion of whatever it is and eat it slowly and enjoy it rather than woof down a lot, where you aren't really tasting most of it. I hope that one of the drugs works for him.
Treat the body, mind and spirit well and hopefully things will go well.
Take care.
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- January 16, 2011 at 11:16 pm
I'm very glad to hear his surgery was a success. Hopefully, there will be a trial out there for him somewhere. I always think if you can just keep going somehow, anyhow, that maybe a new treatment will come up for us. Good luck to you all.
DebbieH, stage IIIC, NED 9 1/2 years after interferon
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- January 16, 2011 at 11:16 pm
I'm very glad to hear his surgery was a success. Hopefully, there will be a trial out there for him somewhere. I always think if you can just keep going somehow, anyhow, that maybe a new treatment will come up for us. Good luck to you all.
DebbieH, stage IIIC, NED 9 1/2 years after interferon
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- January 19, 2011 at 4:03 am
Thank you for all the support.
It's been a long week for the two of us and the family… in hind sight surgery really did go well and Bob was able to go home in 3 days. He is not a very tolerant patient… His words are getting back what they were like before surgery so unless he is tired you don't notice it. It will be interesting to see how he does under the stress of working again. As for now I just have to remind him to stay off his beloved Harley. I am going back to work tomorrow… I have to take his word for now that he will be good.
Bob has read all your good wishes… we had fun at his expense. He tried texting in the hospital after surgery, I really wouldn't advise for anyone with brain surgery or maybe for any surgery with morphine.
Carmin, thanks for the email address… the doctors still have not set up his appointment yet for the gamma knife but are working on the date, ONC and nuerosurgen are teaming up it seems.
Jake In New York… Bob is a stubborn one. You don't have to worry about his diet, he totally believes in eating green. In fact his veggie blender gets a workout for making smoothies and he eats lots of fruits and vegetables. He has made an appointment with a naturopath to help him decipher the vitamin arena. She is a physicians assistant so hopfully she will be able to help him in more depth than others might. Bob believes in his immune system since the melanoma has not shown up in the lymph system so far but he is keeping an open mind to all other clinical trials and info he is reading. Since he is now stage 4 maybe he now qualifies for other trials…
Between his pain drugs, steriods, the stress and facing stage 4, it seems for the first time stress has has taken it's toll on both of us. Tempers are getting shorter for both of us and voices are being raised. Trying to get vital papers in order this week didn't help our situation or outlook. As I read your stories on this board and try to keep my perspective in order, I know my story is not the worst. There are families living much more devasting lives than I am right now but damn… I am tired of all the worry, all day, all night, everyday. But I look at Bob and think if I am tired of all this, then what must he be thinking and keeping to himself?
Peace to all,
Deb
lovingwife to Bob, stage 4
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- January 19, 2011 at 4:03 am
Thank you for all the support.
It's been a long week for the two of us and the family… in hind sight surgery really did go well and Bob was able to go home in 3 days. He is not a very tolerant patient… His words are getting back what they were like before surgery so unless he is tired you don't notice it. It will be interesting to see how he does under the stress of working again. As for now I just have to remind him to stay off his beloved Harley. I am going back to work tomorrow… I have to take his word for now that he will be good.
Bob has read all your good wishes… we had fun at his expense. He tried texting in the hospital after surgery, I really wouldn't advise for anyone with brain surgery or maybe for any surgery with morphine.
Carmin, thanks for the email address… the doctors still have not set up his appointment yet for the gamma knife but are working on the date, ONC and nuerosurgen are teaming up it seems.
Jake In New York… Bob is a stubborn one. You don't have to worry about his diet, he totally believes in eating green. In fact his veggie blender gets a workout for making smoothies and he eats lots of fruits and vegetables. He has made an appointment with a naturopath to help him decipher the vitamin arena. She is a physicians assistant so hopfully she will be able to help him in more depth than others might. Bob believes in his immune system since the melanoma has not shown up in the lymph system so far but he is keeping an open mind to all other clinical trials and info he is reading. Since he is now stage 4 maybe he now qualifies for other trials…
Between his pain drugs, steriods, the stress and facing stage 4, it seems for the first time stress has has taken it's toll on both of us. Tempers are getting shorter for both of us and voices are being raised. Trying to get vital papers in order this week didn't help our situation or outlook. As I read your stories on this board and try to keep my perspective in order, I know my story is not the worst. There are families living much more devasting lives than I am right now but damn… I am tired of all the worry, all day, all night, everyday. But I look at Bob and think if I am tired of all this, then what must he be thinking and keeping to himself?
Peace to all,
Deb
lovingwife to Bob, stage 4
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