› Forums › Cutaneous Melanoma Community › Expiration Date
- This topic has 33 replies, 7 voices, and was last updated 9 years, 11 months ago by
_Paul_.
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- May 23, 2015 at 4:37 pm
I remember quite distinctly sitting in my new oncologist's office last year on Wednesday, September 10. I had had a second recurrence, and I was sitting in his office to discuss the results from a PET of two days earlier. My prior melanoma oncologist had accepted a position at Stanford, and I think this was the initial meeting with new one.
I had had quite a few scans up to this point, but this time it was different. All the prior ones had shown NED. But this time I had mets in lungs, liver and gall bladder. I remember asking him what my prognosis was, and he said the conventional outlook was less than a year. So in my mind I assigned a drop-dead date a year out (apologies for the bad pun). I would be lucky if I made it all the way to midnight on September 9, 2015.
The big problem of course is the uncertainty. What did less than a year mean? A couple of months? Six?
In the past, I would just take time off work to meet with my oncologist when there were scan results to listen to, then go back and finish off the day at work. That had been my plan on this day too. But after hearing the results, I called my boss, and told him I would not be coming back. Maybe ever.
My next thought was I better enjoy my life while I still feel good so I booked a trip to Hawaii and in the meantime took off on a road trip throughout the south west.
After a few weeks I still felt pretty good. I had some side effects from treatment (ipi) but nothing from the cancer. So then I sheepishly returned to work, thinking I had overreacted. But everybody there welcomed me back and the embarrassment quickly faded.
I recently started going to a cancer support group because I wanted to see how other people deal with this strange state of existence. That’s when I heard someone jokingly use the term “expiration date”. That person had outlived hers and I am beginning to think I will too.
What I found was that over a period of just a few months, my fear of the unknown (unknown being how much time is left) has gradually been replaced with this strange outlook. It still seems quite likely that any chance of living to a ripe old age has been greatly reduced, but if I make it to my expiration day, that seems like a reason to celebrate!
I don’t think I am the only one that feels this way. I suspect there are a lot of us that go through a similar process. The end result is that for now anyway, my day to day life from the outside looks unchanged. But I have been left with this heightened awareness that I better appreciate each day of what is ultimately an uncertain future for anyone alive.
I hope someone can relate to this.
Paul
- Replies
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- May 23, 2015 at 7:25 pm
Paul,
Thank you for sharing this. I am stage 3B, and I've had no recurrences, but I still sometimes struggle with the feeling that my chances of living to a ripe old age have been reduced. I get it. Certainly not to the extent that you have experienced this emotion, but I still get it.
I'm a 46 year old mother of three. Since diagnosis (almost) a year ago, I have learned how to ride a motorcycle and my husband and I actually bought two Harleys. I got a tattoo. I've taken some trips. I do things. I'm done living with regrets.
In some ways, I feel that melanoma has given to me as well as it has taken from me. I thank you for sharing your thoughts on this subject, and I predict you'll get a strong positive response on this board!
Best,
Elaine
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- May 23, 2015 at 7:25 pm
Paul,
Thank you for sharing this. I am stage 3B, and I've had no recurrences, but I still sometimes struggle with the feeling that my chances of living to a ripe old age have been reduced. I get it. Certainly not to the extent that you have experienced this emotion, but I still get it.
I'm a 46 year old mother of three. Since diagnosis (almost) a year ago, I have learned how to ride a motorcycle and my husband and I actually bought two Harleys. I got a tattoo. I've taken some trips. I do things. I'm done living with regrets.
In some ways, I feel that melanoma has given to me as well as it has taken from me. I thank you for sharing your thoughts on this subject, and I predict you'll get a strong positive response on this board!
Best,
Elaine
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- May 23, 2015 at 7:25 pm
Paul,
Thank you for sharing this. I am stage 3B, and I've had no recurrences, but I still sometimes struggle with the feeling that my chances of living to a ripe old age have been reduced. I get it. Certainly not to the extent that you have experienced this emotion, but I still get it.
I'm a 46 year old mother of three. Since diagnosis (almost) a year ago, I have learned how to ride a motorcycle and my husband and I actually bought two Harleys. I got a tattoo. I've taken some trips. I do things. I'm done living with regrets.
In some ways, I feel that melanoma has given to me as well as it has taken from me. I thank you for sharing your thoughts on this subject, and I predict you'll get a strong positive response on this board!
Best,
Elaine
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- May 24, 2015 at 10:50 pm
Paul,
That was so nicely said. I am not stage IV but in a different way I can relate to this. I was told that with my particularly aggressive form of melanoma, my likelihood of being here in 5 years is somewhere between 50% and 70%. if I make it to 2 years without disease, my risk begins to decrease, to 3 years and it decreases further. I just passed the 2 year mark, with 1 minor recurrence removed surgically, and I find myself living with these markers in the back of my mind… when I reach them it feels like cause to celebrate. I guess I no longer take for granted a long life, I have a bucket list now. In that sense, my approach to life is vastly different than it was before this all happened. I too went from feeling like I didn't have a moment to waste, to settling back into a more normal routine with work and family. It's just that I seem to be living from one goalpost to the next. Maybe with enough time, our goalposts, and our "expiration dates" will be a distant memory, happily forgotten. Here's hoping that's the case! But for now I too find it a helpful concept.
You said it much more eloquently than I ever could. Just wanted to respond and to thank you for taking the time to write that.
Cheri
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- May 24, 2015 at 10:50 pm
Paul,
That was so nicely said. I am not stage IV but in a different way I can relate to this. I was told that with my particularly aggressive form of melanoma, my likelihood of being here in 5 years is somewhere between 50% and 70%. if I make it to 2 years without disease, my risk begins to decrease, to 3 years and it decreases further. I just passed the 2 year mark, with 1 minor recurrence removed surgically, and I find myself living with these markers in the back of my mind… when I reach them it feels like cause to celebrate. I guess I no longer take for granted a long life, I have a bucket list now. In that sense, my approach to life is vastly different than it was before this all happened. I too went from feeling like I didn't have a moment to waste, to settling back into a more normal routine with work and family. It's just that I seem to be living from one goalpost to the next. Maybe with enough time, our goalposts, and our "expiration dates" will be a distant memory, happily forgotten. Here's hoping that's the case! But for now I too find it a helpful concept.
You said it much more eloquently than I ever could. Just wanted to respond and to thank you for taking the time to write that.
Cheri
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- May 24, 2015 at 10:50 pm
Paul,
That was so nicely said. I am not stage IV but in a different way I can relate to this. I was told that with my particularly aggressive form of melanoma, my likelihood of being here in 5 years is somewhere between 50% and 70%. if I make it to 2 years without disease, my risk begins to decrease, to 3 years and it decreases further. I just passed the 2 year mark, with 1 minor recurrence removed surgically, and I find myself living with these markers in the back of my mind… when I reach them it feels like cause to celebrate. I guess I no longer take for granted a long life, I have a bucket list now. In that sense, my approach to life is vastly different than it was before this all happened. I too went from feeling like I didn't have a moment to waste, to settling back into a more normal routine with work and family. It's just that I seem to be living from one goalpost to the next. Maybe with enough time, our goalposts, and our "expiration dates" will be a distant memory, happily forgotten. Here's hoping that's the case! But for now I too find it a helpful concept.
You said it much more eloquently than I ever could. Just wanted to respond and to thank you for taking the time to write that.
Cheri
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- May 25, 2015 at 1:19 am
Hi Paul,
When you get to Hawaii, look me up. I live on the Big Island and am now officially an "old timer". The living in limbo was stressful yet freeing.
Yes, I'll have that third beer (who cares about diets, I was getting cremated – LOL). Unfortunately I outlived my expiration date and once again have to worry about retierment savings AND putting my young girls through school.
The transition between living life with a forshortened condensed timeframe and hoping to live decades past that makes it hard. Do you continue work? Make memories instead? Long story, and everyone is different. Eventually it becomes clear one way or the other, but the period inbetween can be frustrating as hell.
I totally get it.
Aloha,
Kim
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- May 25, 2015 at 1:19 am
Hi Paul,
When you get to Hawaii, look me up. I live on the Big Island and am now officially an "old timer". The living in limbo was stressful yet freeing.
Yes, I'll have that third beer (who cares about diets, I was getting cremated – LOL). Unfortunately I outlived my expiration date and once again have to worry about retierment savings AND putting my young girls through school.
The transition between living life with a forshortened condensed timeframe and hoping to live decades past that makes it hard. Do you continue work? Make memories instead? Long story, and everyone is different. Eventually it becomes clear one way or the other, but the period inbetween can be frustrating as hell.
I totally get it.
Aloha,
Kim
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- May 25, 2015 at 1:19 am
Hi Paul,
When you get to Hawaii, look me up. I live on the Big Island and am now officially an "old timer". The living in limbo was stressful yet freeing.
Yes, I'll have that third beer (who cares about diets, I was getting cremated – LOL). Unfortunately I outlived my expiration date and once again have to worry about retierment savings AND putting my young girls through school.
The transition between living life with a forshortened condensed timeframe and hoping to live decades past that makes it hard. Do you continue work? Make memories instead? Long story, and everyone is different. Eventually it becomes clear one way or the other, but the period inbetween can be frustrating as hell.
I totally get it.
Aloha,
Kim
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- May 25, 2015 at 6:36 pm
Hi Paul, I really enjoyed reading about your reaction to stage 4. It brought back a lot of members, good and bad. I am happy to say that I am coming up on 2 years since my welcome to the stage 4 club talk with my Onclogist. I think there are a lot of us out here that can relate to not wanting to go back to work after being told you have stage 4 Melanoma and it had spread to your right lung in my case. My Oncologist is great and said to me, our best chance is getting into a trial that is going to start soon from BMS, two drugs ( ipi and Nivolumab) . That is when things got really interesting for me! We had to do a brain scan to qualify, and would't you know I had a met on the MRI, not very big 3-4 mm. Now I got to meet the neural surgeon and Radial Oncologist in the next appointment and was fitted the same day for a lovely mask after agreeing to do cyberknife treatment. Another Mri for special protocal for cyberknife where they found two more little tumors. The waiting was the hardest part, 3 months before rescan. Can you say Merrry X-mas, my rescan was Dec 26 with a follow up appointment the following week. My onclogist, great guy that he is after getting my scan results, had put me into the trial which closed the first week of January. I feel kind of lucky in a funny way, that so many things that could have gone wrong during those months actually went right. I have a 6 year old daughter that I made all kinds of videos for back in the summer of 2013. I once really felt kind of sad that I wouldn't get to see the big momments in her life. But thanks to great new meds, I am still here and enjoying many great benchmarks in her life. Teaching her how to ice skate last winter was the latest highlight for me. Paul, I hope your expiration date gets a big push back so that you get the time to hit the big waves in Hawaii!!! Wishing you the best Ed!
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- May 30, 2015 at 3:27 pm
Thanks Ed! I think one of the reasons I find this board so helpful is that there are so many of us going through similar experiences, and the fact that quite a few of us have made it past that one year mark and are still going strong is simply incredibly powerful and hopeful. I think I recall you are in Ottawa. Skating on the canal with her must be a hoot!
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- May 30, 2015 at 3:27 pm
Thanks Ed! I think one of the reasons I find this board so helpful is that there are so many of us going through similar experiences, and the fact that quite a few of us have made it past that one year mark and are still going strong is simply incredibly powerful and hopeful. I think I recall you are in Ottawa. Skating on the canal with her must be a hoot!
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- May 30, 2015 at 3:27 pm
Thanks Ed! I think one of the reasons I find this board so helpful is that there are so many of us going through similar experiences, and the fact that quite a few of us have made it past that one year mark and are still going strong is simply incredibly powerful and hopeful. I think I recall you are in Ottawa. Skating on the canal with her must be a hoot!
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- May 25, 2015 at 6:36 pm
Hi Paul, I really enjoyed reading about your reaction to stage 4. It brought back a lot of members, good and bad. I am happy to say that I am coming up on 2 years since my welcome to the stage 4 club talk with my Onclogist. I think there are a lot of us out here that can relate to not wanting to go back to work after being told you have stage 4 Melanoma and it had spread to your right lung in my case. My Oncologist is great and said to me, our best chance is getting into a trial that is going to start soon from BMS, two drugs ( ipi and Nivolumab) . That is when things got really interesting for me! We had to do a brain scan to qualify, and would't you know I had a met on the MRI, not very big 3-4 mm. Now I got to meet the neural surgeon and Radial Oncologist in the next appointment and was fitted the same day for a lovely mask after agreeing to do cyberknife treatment. Another Mri for special protocal for cyberknife where they found two more little tumors. The waiting was the hardest part, 3 months before rescan. Can you say Merrry X-mas, my rescan was Dec 26 with a follow up appointment the following week. My onclogist, great guy that he is after getting my scan results, had put me into the trial which closed the first week of January. I feel kind of lucky in a funny way, that so many things that could have gone wrong during those months actually went right. I have a 6 year old daughter that I made all kinds of videos for back in the summer of 2013. I once really felt kind of sad that I wouldn't get to see the big momments in her life. But thanks to great new meds, I am still here and enjoying many great benchmarks in her life. Teaching her how to ice skate last winter was the latest highlight for me. Paul, I hope your expiration date gets a big push back so that you get the time to hit the big waves in Hawaii!!! Wishing you the best Ed!
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- May 25, 2015 at 6:36 pm
Hi Paul, I really enjoyed reading about your reaction to stage 4. It brought back a lot of members, good and bad. I am happy to say that I am coming up on 2 years since my welcome to the stage 4 club talk with my Onclogist. I think there are a lot of us out here that can relate to not wanting to go back to work after being told you have stage 4 Melanoma and it had spread to your right lung in my case. My Oncologist is great and said to me, our best chance is getting into a trial that is going to start soon from BMS, two drugs ( ipi and Nivolumab) . That is when things got really interesting for me! We had to do a brain scan to qualify, and would't you know I had a met on the MRI, not very big 3-4 mm. Now I got to meet the neural surgeon and Radial Oncologist in the next appointment and was fitted the same day for a lovely mask after agreeing to do cyberknife treatment. Another Mri for special protocal for cyberknife where they found two more little tumors. The waiting was the hardest part, 3 months before rescan. Can you say Merrry X-mas, my rescan was Dec 26 with a follow up appointment the following week. My onclogist, great guy that he is after getting my scan results, had put me into the trial which closed the first week of January. I feel kind of lucky in a funny way, that so many things that could have gone wrong during those months actually went right. I have a 6 year old daughter that I made all kinds of videos for back in the summer of 2013. I once really felt kind of sad that I wouldn't get to see the big momments in her life. But thanks to great new meds, I am still here and enjoying many great benchmarks in her life. Teaching her how to ice skate last winter was the latest highlight for me. Paul, I hope your expiration date gets a big push back so that you get the time to hit the big waves in Hawaii!!! Wishing you the best Ed!
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- May 25, 2015 at 8:48 pm
To all of you…Yes, a melanoma diagnosis is certainly a wake-up call. Here is a piece I wrote as a basis for an article I was asked to provide Health Monitor Magazine. It was posted here before by sweet Mat, so some of you have certainly seen it…but I think it sums up how I've reacted to and lived with my melanoma diagnosis since 2003. Yep, 2003. I can assure you my original onc didn't see 2015 in my future. But, there you go!
I wish you all joy, peace, adventures (that DON'T relate to melanoma) and much love. C
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- May 25, 2015 at 8:48 pm
To all of you…Yes, a melanoma diagnosis is certainly a wake-up call. Here is a piece I wrote as a basis for an article I was asked to provide Health Monitor Magazine. It was posted here before by sweet Mat, so some of you have certainly seen it…but I think it sums up how I've reacted to and lived with my melanoma diagnosis since 2003. Yep, 2003. I can assure you my original onc didn't see 2015 in my future. But, there you go!
I wish you all joy, peace, adventures (that DON'T relate to melanoma) and much love. C
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- May 25, 2015 at 8:48 pm
To all of you…Yes, a melanoma diagnosis is certainly a wake-up call. Here is a piece I wrote as a basis for an article I was asked to provide Health Monitor Magazine. It was posted here before by sweet Mat, so some of you have certainly seen it…but I think it sums up how I've reacted to and lived with my melanoma diagnosis since 2003. Yep, 2003. I can assure you my original onc didn't see 2015 in my future. But, there you go!
I wish you all joy, peace, adventures (that DON'T relate to melanoma) and much love. C
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- May 30, 2015 at 8:13 am
Great post, Paul! I passed my expiration date in January. I'm living in my "bonus days" now. Every day feels like an unexpected but very welcome gift. Which when you think about it is really true for everyone. Not one of us is guaranteed one more day. It's so great to get one anyway. I'm very happy for today and I have pretty strong suspicion I'll be here tomorrow too. That's pretty great.
Cheers!
Maggie
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- May 30, 2015 at 8:13 am
Great post, Paul! I passed my expiration date in January. I'm living in my "bonus days" now. Every day feels like an unexpected but very welcome gift. Which when you think about it is really true for everyone. Not one of us is guaranteed one more day. It's so great to get one anyway. I'm very happy for today and I have pretty strong suspicion I'll be here tomorrow too. That's pretty great.
Cheers!
Maggie
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- May 30, 2015 at 8:13 am
Great post, Paul! I passed my expiration date in January. I'm living in my "bonus days" now. Every day feels like an unexpected but very welcome gift. Which when you think about it is really true for everyone. Not one of us is guaranteed one more day. It's so great to get one anyway. I'm very happy for today and I have pretty strong suspicion I'll be here tomorrow too. That's pretty great.
Cheers!
Maggie
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