› Forums › General Melanoma Community › Long Day and Update
- This topic has 51 replies, 17 voices, and was last updated 8 years, 12 months ago by
AshleyS.
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- May 20, 2016 at 4:38 am
So I saw the oncologist today regarding the trial of genetically modified T-Cell theraphy. Sounds so interesting that this can be done. Anyway, thank you to everyone who helped formulate questions, get my thought processes going etc… as it was a productive meeting….from an informational perspective. Now the scary part….
After he discussed trial I asked many questions. The thing that stood and . If I go straight to tril without surgeryand trial doesn't work, what am I looking at? He asked if I was referring to life span so I said yes. He said a year. WHAT??? He wanted me to understand this was statitcally speaking but still…not my thought going into this. So I asked about surgery…and this got interesting…
Apparently the scan shows a bit more disease than I was led to believe from my regular oncologist and thaough he couldn't give me specifics, he said I had a moderate tumor burden and from what I had descibed from my regular oncologist, this may not be a simple surgery to remove an orange sized mass. Anyway, he said that surgery wasn't unresonable and it would delay the process but when I asked if I was his son what would he recommend, he responded surgery. So he set me up with surgeon who made an appt for next Wednesday. After walking out of there I couldn't help but feel this was coming to the end of the road. Now I'm a Christian and I have strong faith. I'm not necessarily a big fan of the institution of religion but I do believe and have been building a strong life in prayer. I had been praying to come out of this meeting with a plan something set that I can work forward to. So long story short, my aunt who was sitting there has an old boss of hers walk by her and they connect. Guess what she does? The Executive Director of Oncology Dept. My aunt texts me to come back to hospital and I will see surgeon this afternoon. I prayed hard for that…answered.
Sorry I know this is getting long winded but you have to remeber this is my day from 9-5:30. I see surgeon, he goes over CT and said it's 50/50 on how extensive surgery will be. He wants to get everything he can once he opens me up. So I go back tomorrow for liver CT Scan and a colonosocpy on Monday with surgery scheduled for the 27th. He just wants the best roadmap possible before he goes in. I did all the bloodwork, EKG, pre-surgical stuff. Hopefully this will putme on the road to winning the fight. I'm just terrified….I can be dead in a year? Thought never crossed my mind…I feel way too good for that! Not to mention that on way home from his game my 12yr old son pushed me on what was going on so I had to have the talk with him and it was the hardest thing to do in my life. The fear and pain I saw on his face and when he lost it; I've just been heartbroken. My biggest fear is the pain this can cause my kids and I have no control over it. I'm going to fight…as docs said today…compatmentalize….surgery, heal and while healing decide on a trial.
Thanks for listening, been an exhausting day of ups and downs. Thank you to all who read,support,share and inspire. This forum is like family. It really helps me. Celeste is a treasure, Ed, Mat, KyleZ, Gary and so many more are just first class individulas. Going to try and sleep…be well and to Charlie S…keep on keepin on!!!!
Josh
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- May 20, 2016 at 8:53 am
I pray your surgery and healing go all according to plan and you find a trial that brings you many more years with your wife and children. I pray this for you in Jesus' name. Amen
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- May 20, 2016 at 8:53 am
I pray your surgery and healing go all according to plan and you find a trial that brings you many more years with your wife and children. I pray this for you in Jesus' name. Amen
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- May 20, 2016 at 8:53 am
I pray your surgery and healing go all according to plan and you find a trial that brings you many more years with your wife and children. I pray this for you in Jesus' name. Amen
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- May 20, 2016 at 11:52 am
I had to reply having seen your post. I think you had an amazing day. It was a privilege to read about it.
After my first scan they thought I was Stage 4. I asked how long I would live without treatment. I was told 1-3 years. I think you will find that where you went today, during that conversation and afterwards, is not a bad place to have been. It introduces a clarity of thought. After that, the decision-making process was much, much simpler. Each day is more precious and vibrant.
And I am so impressed you had 'the talk' with your son. My father died of cancer over two years when I was a young child. I know it was a long time ago and we were younger than your son (we were 8, 6 and 2 when my father died) but the approach was to leave us children with our grandparents all the time and tell us as little as possible. It was not a sound approach and all three of us still carry the scars. You did the right thing.
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- May 20, 2016 at 11:52 am
I had to reply having seen your post. I think you had an amazing day. It was a privilege to read about it.
After my first scan they thought I was Stage 4. I asked how long I would live without treatment. I was told 1-3 years. I think you will find that where you went today, during that conversation and afterwards, is not a bad place to have been. It introduces a clarity of thought. After that, the decision-making process was much, much simpler. Each day is more precious and vibrant.
And I am so impressed you had 'the talk' with your son. My father died of cancer over two years when I was a young child. I know it was a long time ago and we were younger than your son (we were 8, 6 and 2 when my father died) but the approach was to leave us children with our grandparents all the time and tell us as little as possible. It was not a sound approach and all three of us still carry the scars. You did the right thing.
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- May 20, 2016 at 11:52 am
I had to reply having seen your post. I think you had an amazing day. It was a privilege to read about it.
After my first scan they thought I was Stage 4. I asked how long I would live without treatment. I was told 1-3 years. I think you will find that where you went today, during that conversation and afterwards, is not a bad place to have been. It introduces a clarity of thought. After that, the decision-making process was much, much simpler. Each day is more precious and vibrant.
And I am so impressed you had 'the talk' with your son. My father died of cancer over two years when I was a young child. I know it was a long time ago and we were younger than your son (we were 8, 6 and 2 when my father died) but the approach was to leave us children with our grandparents all the time and tell us as little as possible. It was not a sound approach and all three of us still carry the scars. You did the right thing.
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- May 20, 2016 at 11:58 am
Oh, Josh that is one heck of a day and a great deal of information to have to deal with. Your docs sound like champs! You asked one of my favorite questions…What would you do if I were your wife, son…..? And….it seems he gave you his best advice. Then the surgeon seems on the ball…making a real and thorough map BEFORE he starts digging around. Soooo…go for it!
My kids were 10 and 12 when I started all this. Dealing with my worry for them….the heart breaking talks with them…the pain I caused them remains the most hateful and hardest thing I have ever, ever had to deal with…melanoma treatment itself was a breeze in comparison. On the other hand…we are all here…still standing…and perhaps….the stronger for what we have been through. When you're ready for a laugh: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/the-melanoma-avengers.html
You and your kids will make it through this, too!
Hadn't really thought of this approach as "compartmentalize", but I like it! It is not putting your head in the sand, it is not disregarding bits. Nobody got anywhere…to any sort of 'destination'….the moon, the finish line, good health….without steps. So, yes! Compartmentalize! See docs….BOOM! Get tests for surg…BOOM! Surgery….heal…BOOM! Plan trial or next systemic treatment (and your peeps can come up with loads of those!)….BOOM! Kick melnoma to the curb…BOOM!
Rest up. Gather your reserves. Get your testing. All fingers and toes are crossed for you! Love, c
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- May 20, 2016 at 11:58 am
Oh, Josh that is one heck of a day and a great deal of information to have to deal with. Your docs sound like champs! You asked one of my favorite questions…What would you do if I were your wife, son…..? And….it seems he gave you his best advice. Then the surgeon seems on the ball…making a real and thorough map BEFORE he starts digging around. Soooo…go for it!
My kids were 10 and 12 when I started all this. Dealing with my worry for them….the heart breaking talks with them…the pain I caused them remains the most hateful and hardest thing I have ever, ever had to deal with…melanoma treatment itself was a breeze in comparison. On the other hand…we are all here…still standing…and perhaps….the stronger for what we have been through. When you're ready for a laugh: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/the-melanoma-avengers.html
You and your kids will make it through this, too!
Hadn't really thought of this approach as "compartmentalize", but I like it! It is not putting your head in the sand, it is not disregarding bits. Nobody got anywhere…to any sort of 'destination'….the moon, the finish line, good health….without steps. So, yes! Compartmentalize! See docs….BOOM! Get tests for surg…BOOM! Surgery….heal…BOOM! Plan trial or next systemic treatment (and your peeps can come up with loads of those!)….BOOM! Kick melnoma to the curb…BOOM!
Rest up. Gather your reserves. Get your testing. All fingers and toes are crossed for you! Love, c
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- May 20, 2016 at 1:49 pm
yes…keep yuor head upand keep asking God to help you in the right direction and the doctors. Watched my husband go through these same decisions for 3 years back and forth and we always kept our two young teen girls in the loop….doing so made it much less shocking for them when we had to eventually talk to them about what was to come in the end for my husband. Hopefully your treatment an/or surgery options will be successsful.
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- May 20, 2016 at 1:49 pm
yes…keep yuor head upand keep asking God to help you in the right direction and the doctors. Watched my husband go through these same decisions for 3 years back and forth and we always kept our two young teen girls in the loop….doing so made it much less shocking for them when we had to eventually talk to them about what was to come in the end for my husband. Hopefully your treatment an/or surgery options will be successsful.
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- May 20, 2016 at 1:49 pm
yes…keep yuor head upand keep asking God to help you in the right direction and the doctors. Watched my husband go through these same decisions for 3 years back and forth and we always kept our two young teen girls in the loop….doing so made it much less shocking for them when we had to eventually talk to them about what was to come in the end for my husband. Hopefully your treatment an/or surgery options will be successsful.
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- May 20, 2016 at 11:58 am
Oh, Josh that is one heck of a day and a great deal of information to have to deal with. Your docs sound like champs! You asked one of my favorite questions…What would you do if I were your wife, son…..? And….it seems he gave you his best advice. Then the surgeon seems on the ball…making a real and thorough map BEFORE he starts digging around. Soooo…go for it!
My kids were 10 and 12 when I started all this. Dealing with my worry for them….the heart breaking talks with them…the pain I caused them remains the most hateful and hardest thing I have ever, ever had to deal with…melanoma treatment itself was a breeze in comparison. On the other hand…we are all here…still standing…and perhaps….the stronger for what we have been through. When you're ready for a laugh: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/the-melanoma-avengers.html
You and your kids will make it through this, too!
Hadn't really thought of this approach as "compartmentalize", but I like it! It is not putting your head in the sand, it is not disregarding bits. Nobody got anywhere…to any sort of 'destination'….the moon, the finish line, good health….without steps. So, yes! Compartmentalize! See docs….BOOM! Get tests for surg…BOOM! Surgery….heal…BOOM! Plan trial or next systemic treatment (and your peeps can come up with loads of those!)….BOOM! Kick melnoma to the curb…BOOM!
Rest up. Gather your reserves. Get your testing. All fingers and toes are crossed for you! Love, c
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- May 20, 2016 at 1:10 pm
Wow, Josh, what a tough day! Going over so much information and processing it immediately is so difficult in one day. I also like the compartmentalize method, and I do it myself. One step at a time. Focus on the pretesting now. Then the surgery. One foot in front of the other! It’s easier to focus on a goal and not get overwhelmed when you have a specific thing to focus on.I know it’s hard to deal with our mortality. But just like other statistics, don’t let that “year” date bog you down. There are so many survivors on this board who shouldn’t be here based on what their docs told them. But they ARE here, and they aren’t going anywhere! Use this to remind you that life is precious, and that you need to make every moment with your family count! This is a hard time for everyone in your family, but if they know you’re still YOU and you still love them, no matter what, that sets the tone. Show them a little extra love. It works for me with my husband 😉
Good luck with all the pretesting coming up. We’re all rooting for you!
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- May 20, 2016 at 1:10 pm
Wow, Josh, what a tough day! Going over so much information and processing it immediately is so difficult in one day. I also like the compartmentalize method, and I do it myself. One step at a time. Focus on the pretesting now. Then the surgery. One foot in front of the other! It’s easier to focus on a goal and not get overwhelmed when you have a specific thing to focus on.I know it’s hard to deal with our mortality. But just like other statistics, don’t let that “year” date bog you down. There are so many survivors on this board who shouldn’t be here based on what their docs told them. But they ARE here, and they aren’t going anywhere! Use this to remind you that life is precious, and that you need to make every moment with your family count! This is a hard time for everyone in your family, but if they know you’re still YOU and you still love them, no matter what, that sets the tone. Show them a little extra love. It works for me with my husband 😉
Good luck with all the pretesting coming up. We’re all rooting for you!
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- May 20, 2016 at 1:44 pm
Josh, you asked the right question and you are being very aggressive in your treatment plan. I’m with Celeste on this with the compartmentalization…you are doing all you can do. You planned the work now work the plan and take it one day at a time. Put out in the universe what you want – this one year business was said now focus on the goal and try and put it out of your mind. Keep us posted as I know you will and I will be praying for you.
Kristi
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- May 20, 2016 at 1:44 pm
Josh, you asked the right question and you are being very aggressive in your treatment plan. I’m with Celeste on this with the compartmentalization…you are doing all you can do. You planned the work now work the plan and take it one day at a time. Put out in the universe what you want – this one year business was said now focus on the goal and try and put it out of your mind. Keep us posted as I know you will and I will be praying for you.
Kristi
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- May 20, 2016 at 1:44 pm
Josh, you asked the right question and you are being very aggressive in your treatment plan. I’m with Celeste on this with the compartmentalization…you are doing all you can do. You planned the work now work the plan and take it one day at a time. Put out in the universe what you want – this one year business was said now focus on the goal and try and put it out of your mind. Keep us posted as I know you will and I will be praying for you.
Kristi
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- May 20, 2016 at 1:10 pm
Wow, Josh, what a tough day! Going over so much information and processing it immediately is so difficult in one day. I also like the compartmentalize method, and I do it myself. One step at a time. Focus on the pretesting now. Then the surgery. One foot in front of the other! It’s easier to focus on a goal and not get overwhelmed when you have a specific thing to focus on.I know it’s hard to deal with our mortality. But just like other statistics, don’t let that “year” date bog you down. There are so many survivors on this board who shouldn’t be here based on what their docs told them. But they ARE here, and they aren’t going anywhere! Use this to remind you that life is precious, and that you need to make every moment with your family count! This is a hard time for everyone in your family, but if they know you’re still YOU and you still love them, no matter what, that sets the tone. Show them a little extra love. It works for me with my husband 😉
Good luck with all the pretesting coming up. We’re all rooting for you!
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- May 20, 2016 at 4:33 pm
That is a long day of ups and downs- at least you have a plan though, and while they may have only given you a year, that's a year to figure out what to do next. If there's anything I've learned as I've tried and failed various things- more time is more time to find something else, something better. Keep going, don't look back. It's ok to be scared and upset, but keep going forward and keep looking/thinking of what comes next.
Best of luck,
-Eva
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- May 20, 2016 at 4:33 pm
That is a long day of ups and downs- at least you have a plan though, and while they may have only given you a year, that's a year to figure out what to do next. If there's anything I've learned as I've tried and failed various things- more time is more time to find something else, something better. Keep going, don't look back. It's ok to be scared and upset, but keep going forward and keep looking/thinking of what comes next.
Best of luck,
-Eva
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- May 20, 2016 at 4:33 pm
That is a long day of ups and downs- at least you have a plan though, and while they may have only given you a year, that's a year to figure out what to do next. If there's anything I've learned as I've tried and failed various things- more time is more time to find something else, something better. Keep going, don't look back. It's ok to be scared and upset, but keep going forward and keep looking/thinking of what comes next.
Best of luck,
-Eva
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- May 20, 2016 at 5:07 pm
I wish you a great successful week ahead Josh! I know getting that shocking timeline can really send you back in your mind. But just think how lucky you are that you are able to have surgery. I was not given that option because there was just too much cancer spread in too many places. But I ended up lucking-out and the Keytruda worked for me.
All my best always, Laurie
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- May 20, 2016 at 5:07 pm
I wish you a great successful week ahead Josh! I know getting that shocking timeline can really send you back in your mind. But just think how lucky you are that you are able to have surgery. I was not given that option because there was just too much cancer spread in too many places. But I ended up lucking-out and the Keytruda worked for me.
All my best always, Laurie
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- May 20, 2016 at 6:00 pm
Josh,
We are pulling for you!! I think you're doing a fantastic job advocating for yourself. I agree also with your decision to have surgery. My husband had surgery even though he wouldn't be NED because two nodules were very close to his heart. We have no regrets. Ask the surgeon if they can use t-vec internally. When we were at MSK they said that they were working on that. Also ask your surgeon about cryoablation. I'm not sure if they can do that with your tumors,but its been getting good results. I'm sure Brian or Celeste would be able to find current articles on it.
Please try to just take all of this in steps. Don't listen to statistics. We had one PA tell Bill that it was a shame he was going to die because he had a small tumor load. No one knows! You may be NED after surgery and a successful systemic treatment !!!! Keep fighting!!!!
Maureen
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- May 20, 2016 at 6:00 pm
Josh,
We are pulling for you!! I think you're doing a fantastic job advocating for yourself. I agree also with your decision to have surgery. My husband had surgery even though he wouldn't be NED because two nodules were very close to his heart. We have no regrets. Ask the surgeon if they can use t-vec internally. When we were at MSK they said that they were working on that. Also ask your surgeon about cryoablation. I'm not sure if they can do that with your tumors,but its been getting good results. I'm sure Brian or Celeste would be able to find current articles on it.
Please try to just take all of this in steps. Don't listen to statistics. We had one PA tell Bill that it was a shame he was going to die because he had a small tumor load. No one knows! You may be NED after surgery and a successful systemic treatment !!!! Keep fighting!!!!
Maureen
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- May 20, 2016 at 6:00 pm
Josh,
We are pulling for you!! I think you're doing a fantastic job advocating for yourself. I agree also with your decision to have surgery. My husband had surgery even though he wouldn't be NED because two nodules were very close to his heart. We have no regrets. Ask the surgeon if they can use t-vec internally. When we were at MSK they said that they were working on that. Also ask your surgeon about cryoablation. I'm not sure if they can do that with your tumors,but its been getting good results. I'm sure Brian or Celeste would be able to find current articles on it.
Please try to just take all of this in steps. Don't listen to statistics. We had one PA tell Bill that it was a shame he was going to die because he had a small tumor load. No one knows! You may be NED after surgery and a successful systemic treatment !!!! Keep fighting!!!!
Maureen
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- May 20, 2016 at 5:07 pm
I wish you a great successful week ahead Josh! I know getting that shocking timeline can really send you back in your mind. But just think how lucky you are that you are able to have surgery. I was not given that option because there was just too much cancer spread in too many places. But I ended up lucking-out and the Keytruda worked for me.
All my best always, Laurie
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- May 20, 2016 at 6:16 pm
Hi Josh,
So many good comments here, you continue to know many are praying for you and your family. Just a couple of other thoughts. It's awesome to have a plan. Not knowing, is so much more stressful. Yeah, they gave me a year, about a year ago. But that was before the ipi/nivo combo was approved, and I may finally be responding to this after three years of failing everything. June 1st is my big day to verify whether I really am responding in any meaningful way. Your next treatment may be the one. For now you do what you must to ensure the future option. I wrote here once that surrendering is an important step in healing. Not to give up the fight, but to calmly move forward with the knowledge that you are in good hands, and making the best decisions you can. Stress is a killer too. I also had to have the conversation with my then 13-year old daughter. We would sell the house she grew up in and loved, and things would have to change, but she would be cared for, and supported, and in every way possible her life would not be disrupted. She has handled it magnificently. It has not stopped her in her quest for strait A's, and she is the one who has compartmentalized the situation. We never talk about my situation, although she is fully aware of what's going on. Have faith your son will understand and continue to thrive. We look forward to your speedy recovery from surgery and that the next big thing is the one you have waited for.
Gary
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- May 20, 2016 at 6:16 pm
Hi Josh,
So many good comments here, you continue to know many are praying for you and your family. Just a couple of other thoughts. It's awesome to have a plan. Not knowing, is so much more stressful. Yeah, they gave me a year, about a year ago. But that was before the ipi/nivo combo was approved, and I may finally be responding to this after three years of failing everything. June 1st is my big day to verify whether I really am responding in any meaningful way. Your next treatment may be the one. For now you do what you must to ensure the future option. I wrote here once that surrendering is an important step in healing. Not to give up the fight, but to calmly move forward with the knowledge that you are in good hands, and making the best decisions you can. Stress is a killer too. I also had to have the conversation with my then 13-year old daughter. We would sell the house she grew up in and loved, and things would have to change, but she would be cared for, and supported, and in every way possible her life would not be disrupted. She has handled it magnificently. It has not stopped her in her quest for strait A's, and she is the one who has compartmentalized the situation. We never talk about my situation, although she is fully aware of what's going on. Have faith your son will understand and continue to thrive. We look forward to your speedy recovery from surgery and that the next big thing is the one you have waited for.
Gary
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- May 20, 2016 at 6:16 pm
Hi Josh,
So many good comments here, you continue to know many are praying for you and your family. Just a couple of other thoughts. It's awesome to have a plan. Not knowing, is so much more stressful. Yeah, they gave me a year, about a year ago. But that was before the ipi/nivo combo was approved, and I may finally be responding to this after three years of failing everything. June 1st is my big day to verify whether I really am responding in any meaningful way. Your next treatment may be the one. For now you do what you must to ensure the future option. I wrote here once that surrendering is an important step in healing. Not to give up the fight, but to calmly move forward with the knowledge that you are in good hands, and making the best decisions you can. Stress is a killer too. I also had to have the conversation with my then 13-year old daughter. We would sell the house she grew up in and loved, and things would have to change, but she would be cared for, and supported, and in every way possible her life would not be disrupted. She has handled it magnificently. It has not stopped her in her quest for strait A's, and she is the one who has compartmentalized the situation. We never talk about my situation, although she is fully aware of what's going on. Have faith your son will understand and continue to thrive. We look forward to your speedy recovery from surgery and that the next big thing is the one you have waited for.
Gary
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- May 20, 2016 at 7:21 pm
Josh, it sounds like you have a good plan. Having faced some of the issues you're dealing with, my only (unsolicited) advice is to do your best to stay in the present (while of course developing a good action plan for your next treatment)–and take it moment-by-moment. Recovery from this type of surgery can be tough. Remember to remind yourself that you'll recover your energy and get through it.
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- May 20, 2016 at 7:21 pm
Josh, it sounds like you have a good plan. Having faced some of the issues you're dealing with, my only (unsolicited) advice is to do your best to stay in the present (while of course developing a good action plan for your next treatment)–and take it moment-by-moment. Recovery from this type of surgery can be tough. Remember to remind yourself that you'll recover your energy and get through it.
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- May 20, 2016 at 7:21 pm
Josh, it sounds like you have a good plan. Having faced some of the issues you're dealing with, my only (unsolicited) advice is to do your best to stay in the present (while of course developing a good action plan for your next treatment)–and take it moment-by-moment. Recovery from this type of surgery can be tough. Remember to remind yourself that you'll recover your energy and get through it.
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- May 20, 2016 at 9:22 pm
Wow, Josh. What a day! I have nothing to offer that hasn't been said. I do agree that staying in the present moment is the best thing for all of us. It really is all we have. We need to be aware of everything, make the plans that are necessary for living, etc, but the rest of the time should be spent realizing that life is good and we are part of that goodness. Prayers for you!
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- May 20, 2016 at 9:22 pm
Wow, Josh. What a day! I have nothing to offer that hasn't been said. I do agree that staying in the present moment is the best thing for all of us. It really is all we have. We need to be aware of everything, make the plans that are necessary for living, etc, but the rest of the time should be spent realizing that life is good and we are part of that goodness. Prayers for you!
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- May 20, 2016 at 9:22 pm
Wow, Josh. What a day! I have nothing to offer that hasn't been said. I do agree that staying in the present moment is the best thing for all of us. It really is all we have. We need to be aware of everything, make the plans that are necessary for living, etc, but the rest of the time should be spent realizing that life is good and we are part of that goodness. Prayers for you!
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- May 21, 2016 at 12:10 am
What a day! That was certainly a rough one but I'm glad it is behind you and you have a plan to move forward. Surgery is never fun but often, with melanoma, it can be hugely beneficial. I was offered surgery early on and just about everyone on this site advised me to do the surgery, but I declined as I figured it was already systemic so why bother. Now that I've gone over a year without any new spots, I'm sorta wishing I'd had the surgery. I'm glad it's an option for you. Best of luck on your new path!
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- May 21, 2016 at 12:10 am
What a day! That was certainly a rough one but I'm glad it is behind you and you have a plan to move forward. Surgery is never fun but often, with melanoma, it can be hugely beneficial. I was offered surgery early on and just about everyone on this site advised me to do the surgery, but I declined as I figured it was already systemic so why bother. Now that I've gone over a year without any new spots, I'm sorta wishing I'd had the surgery. I'm glad it's an option for you. Best of luck on your new path!
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- May 21, 2016 at 12:10 am
What a day! That was certainly a rough one but I'm glad it is behind you and you have a plan to move forward. Surgery is never fun but often, with melanoma, it can be hugely beneficial. I was offered surgery early on and just about everyone on this site advised me to do the surgery, but I declined as I figured it was already systemic so why bother. Now that I've gone over a year without any new spots, I'm sorta wishing I'd had the surgery. I'm glad it's an option for you. Best of luck on your new path!
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- May 21, 2016 at 4:09 pm
Thank you everybody. I appreciate everyone's support in such a difficult time. I'm looking to get on with fight. Everyone here is such a warrior. I know surgery won't be easy but I'm looking forward to getting it done and decide on treatment plan. The oncologists agree that surgery is best option to rid me of most of tumor burden but it will not make me NED. They had no explanation as to why tumor grew fast other than it was there and never detected…could've grown over 6 months or past month. I really didn't have any symptoms at least that I could attribute to this. Anyway, I'm trying to keep head in the game. I've got to beat this or beat it back until something else comes out of pipeline. Love & prayers to you all!
Josh
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- May 21, 2016 at 4:09 pm
Thank you everybody. I appreciate everyone's support in such a difficult time. I'm looking to get on with fight. Everyone here is such a warrior. I know surgery won't be easy but I'm looking forward to getting it done and decide on treatment plan. The oncologists agree that surgery is best option to rid me of most of tumor burden but it will not make me NED. They had no explanation as to why tumor grew fast other than it was there and never detected…could've grown over 6 months or past month. I really didn't have any symptoms at least that I could attribute to this. Anyway, I'm trying to keep head in the game. I've got to beat this or beat it back until something else comes out of pipeline. Love & prayers to you all!
Josh
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- May 21, 2016 at 4:09 pm
Thank you everybody. I appreciate everyone's support in such a difficult time. I'm looking to get on with fight. Everyone here is such a warrior. I know surgery won't be easy but I'm looking forward to getting it done and decide on treatment plan. The oncologists agree that surgery is best option to rid me of most of tumor burden but it will not make me NED. They had no explanation as to why tumor grew fast other than it was there and never detected…could've grown over 6 months or past month. I really didn't have any symptoms at least that I could attribute to this. Anyway, I'm trying to keep head in the game. I've got to beat this or beat it back until something else comes out of pipeline. Love & prayers to you all!
Josh
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- May 21, 2016 at 8:46 pm
Josh,
Hang in there! You are doing a great job navigating these difficult waters. I was just reading your post to my wife about you telling your son about your situation and we were both in tears. That really hits to the core. Good luck with the surgery. It's amazing the quick timeline you accomplishing. All surgeries suck but my small bowel resection wasn't nearly as sucky as I was anticipating. Hopefully you'll have a similar experience. This thread is a great example of why I love this board. The advice you've received on here is incredible in so many ways. I'll be keeping you in our prayers.
Brian
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- May 21, 2016 at 8:46 pm
Josh,
Hang in there! You are doing a great job navigating these difficult waters. I was just reading your post to my wife about you telling your son about your situation and we were both in tears. That really hits to the core. Good luck with the surgery. It's amazing the quick timeline you accomplishing. All surgeries suck but my small bowel resection wasn't nearly as sucky as I was anticipating. Hopefully you'll have a similar experience. This thread is a great example of why I love this board. The advice you've received on here is incredible in so many ways. I'll be keeping you in our prayers.
Brian
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- May 21, 2016 at 8:46 pm
Josh,
Hang in there! You are doing a great job navigating these difficult waters. I was just reading your post to my wife about you telling your son about your situation and we were both in tears. That really hits to the core. Good luck with the surgery. It's amazing the quick timeline you accomplishing. All surgeries suck but my small bowel resection wasn't nearly as sucky as I was anticipating. Hopefully you'll have a similar experience. This thread is a great example of why I love this board. The advice you've received on here is incredible in so many ways. I'll be keeping you in our prayers.
Brian
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- May 22, 2016 at 2:30 pm
Glad you have a plan Josh:) I think compartmentalizing is good advice. And I have to work hard to control my thoughts. I don't want to waste any good days worrying about bad ones!! I can worry about them if they come!! Many many prayers from this praying girl!!
Love,
kerri–momofjake
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- May 22, 2016 at 2:30 pm
Glad you have a plan Josh:) I think compartmentalizing is good advice. And I have to work hard to control my thoughts. I don't want to waste any good days worrying about bad ones!! I can worry about them if they come!! Many many prayers from this praying girl!!
Love,
kerri–momofjake
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- May 22, 2016 at 2:30 pm
Glad you have a plan Josh:) I think compartmentalizing is good advice. And I have to work hard to control my thoughts. I don't want to waste any good days worrying about bad ones!! I can worry about them if they come!! Many many prayers from this praying girl!!
Love,
kerri–momofjake
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- May 23, 2016 at 6:44 pm
Hey Josh. Your specialist sounds good. Although you asked the prognosis question, I like that he said the number he gave you was only statistical. I also love that you asked, "If I was your son…" Someone told me to word things that way to docs and I've found it works.
We have similar thoughts on religion/prayer. I dealt with depression in my teens and with fertility issues in my 20s. Sometimes I believe those points of my life were darker than my stage IV melanoma diagnosis. I feel it is because at those points in my life I closed myself off. Along my cancer journey (puke… I hate that word, but cannot think of a better one) I decided to be open. I blog, speak to groups/churches, and share A LOT via social media. I don't know if it's the power of prayer that I have opened myself up to, or if it's just better for my psyche to share, but emotionally I've been very strong throughout the fight.
In the beginning I tried a lot of things to help myself "Naturally." The one thing I really hold onto is meditation/visualization. I picture myself walking my kids into school for their first day of kindergarten, straightening my son's bowtie at prom, and holding my daughter's children. (Keep in mind, they're 1 & 3!) I also imagine my husband and me, retired, sitting on the deck, sharing a beer, and looking at the lake. I try to do this daily, but sometimes it only happens a few times a week. However, whenever I have scans, I visualize the entire time. They actually go quite quickly that way.
Best of luck….May 27 can't come fast enough.
Ashley
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- May 23, 2016 at 6:44 pm
Hey Josh. Your specialist sounds good. Although you asked the prognosis question, I like that he said the number he gave you was only statistical. I also love that you asked, "If I was your son…" Someone told me to word things that way to docs and I've found it works.
We have similar thoughts on religion/prayer. I dealt with depression in my teens and with fertility issues in my 20s. Sometimes I believe those points of my life were darker than my stage IV melanoma diagnosis. I feel it is because at those points in my life I closed myself off. Along my cancer journey (puke… I hate that word, but cannot think of a better one) I decided to be open. I blog, speak to groups/churches, and share A LOT via social media. I don't know if it's the power of prayer that I have opened myself up to, or if it's just better for my psyche to share, but emotionally I've been very strong throughout the fight.
In the beginning I tried a lot of things to help myself "Naturally." The one thing I really hold onto is meditation/visualization. I picture myself walking my kids into school for their first day of kindergarten, straightening my son's bowtie at prom, and holding my daughter's children. (Keep in mind, they're 1 & 3!) I also imagine my husband and me, retired, sitting on the deck, sharing a beer, and looking at the lake. I try to do this daily, but sometimes it only happens a few times a week. However, whenever I have scans, I visualize the entire time. They actually go quite quickly that way.
Best of luck….May 27 can't come fast enough.
Ashley
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- May 23, 2016 at 6:44 pm
Hey Josh. Your specialist sounds good. Although you asked the prognosis question, I like that he said the number he gave you was only statistical. I also love that you asked, "If I was your son…" Someone told me to word things that way to docs and I've found it works.
We have similar thoughts on religion/prayer. I dealt with depression in my teens and with fertility issues in my 20s. Sometimes I believe those points of my life were darker than my stage IV melanoma diagnosis. I feel it is because at those points in my life I closed myself off. Along my cancer journey (puke… I hate that word, but cannot think of a better one) I decided to be open. I blog, speak to groups/churches, and share A LOT via social media. I don't know if it's the power of prayer that I have opened myself up to, or if it's just better for my psyche to share, but emotionally I've been very strong throughout the fight.
In the beginning I tried a lot of things to help myself "Naturally." The one thing I really hold onto is meditation/visualization. I picture myself walking my kids into school for their first day of kindergarten, straightening my son's bowtie at prom, and holding my daughter's children. (Keep in mind, they're 1 & 3!) I also imagine my husband and me, retired, sitting on the deck, sharing a beer, and looking at the lake. I try to do this daily, but sometimes it only happens a few times a week. However, whenever I have scans, I visualize the entire time. They actually go quite quickly that way.
Best of luck….May 27 can't come fast enough.
Ashley
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