Update on Eric – caution graphic pictures

Dear Jill,

Thank you so much for posting this.  While I did not look at the video (Dave has just been upstaged to stage IV, and I'm honestly just not ready yet) I appreciate you putting it out there.  Your journey has been difficult, as many others have been.  It is an honest look at this dreadful disease, and you cannot hide from it.

I am sorry that anonymous took offense to it.  I personally do not look at the videos because they honestly scare me, but that is my choice.  And I would never ask you not to post because of my personal fear.  I have also been on the board awhile, and I know I've looked to your posts for inspiration and hope in the past.  I can only hope I carry the strength you do should I ever have to travel your road.

I'm thinking of the both of you…and sending lots of hugs ((()))

Maria

Dear Jill,

Thank you so much for posting this.  While I did not look at the video (Dave has just been upstaged to stage IV, and I'm honestly just not ready yet) I appreciate you putting it out there.  Your journey has been difficult, as many others have been.  It is an honest look at this dreadful disease, and you cannot hide from it.

I am sorry that anonymous took offense to it.  I personally do not look at the videos because they honestly scare me, but that is my choice.  And I would never ask you not to post because of my personal fear.  I have also been on the board awhile, and I know I've looked to your posts for inspiration and hope in the past.  I can only hope I carry the strength you do should I ever have to travel your road.

I'm thinking of the both of you…and sending lots of hugs ((()))

Maria

Jill, as I battle this on a daily basis (stage IIIB with new melanomas satellites appearing on a weekly basis, I've followed your guys story and have had you in my prayers all the time.

I always admired this forum as I had never really read an insensitive post from anyone to anyone until today. I was hoping this would be 1 forum that would be immune to that type of thing, but alas…

My continued prayers are with you both – keep us posted and know that you are truly an angel/caregiver (as is my wife!).

Bless both you and Eric.

David

Jill, as I battle this on a daily basis (stage IIIB with new melanomas satellites appearing on a weekly basis, I've followed your guys story and have had you in my prayers all the time.

I always admired this forum as I had never really read an insensitive post from anyone to anyone until today. I was hoping this would be 1 forum that would be immune to that type of thing, but alas…

My continued prayers are with you both – keep us posted and know that you are truly an angel/caregiver (as is my wife!).

Bless both you and Eric.

David

Dear Jill and Eric,

Thank you for this post, and for posting pictures of Eric's leg, which is full of ugly, nasty melanoma cancer. You have put disclaimers on the post so people do not have to look knowing the pictures/video are GRAPHIC. I know it is your intent to educate people and while it is true that not all melanomas arise from sun damage, many many of them do, or from tanning bed use. Eric's leg is showing melanoma running amuck, destroying his leg and as we know it has metastisized to his spine and brain, and most likely many organs, and he is slowly dying. People, this is what melanoma cancer IS…UGLY, HUGE, and NASTY….and it is taking Eric's life. Many of us have melanoma that started in a limb, including me (so far confined to a limb, my right leg), and this past winter, my melanoma was growing out of control, I had many many cutaneous and sub cutaneous tumors, individual tumors and huge clumps of tumors, not as severe as Eric's but still growing daily…this is scary stuff. The pictures that Eric and JIll have posted previously have stayed in my mind and I knew I had to be aggressive…thats why I was considering leg amputation, until I was enrolled in a clinical trial with Ipilimumab, and fortunately I was a complete responder. I have never been "scared" to look at Jill and Eric's pictures of his leg…I NEED to look at those pictures……they inspire me to fight harder, and to educate people as the opportunity arises in my life.

Thank you Eric and Jill, for your courage and for sharing your fight against the beast.

Vermont_Donna, stage 3a, NED

Dear Jill and Eric,

Thank you for this post, and for posting pictures of Eric's leg, which is full of ugly, nasty melanoma cancer. You have put disclaimers on the post so people do not have to look knowing the pictures/video are GRAPHIC. I know it is your intent to educate people and while it is true that not all melanomas arise from sun damage, many many of them do, or from tanning bed use. Eric's leg is showing melanoma running amuck, destroying his leg and as we know it has metastisized to his spine and brain, and most likely many organs, and he is slowly dying. People, this is what melanoma cancer IS…UGLY, HUGE, and NASTY….and it is taking Eric's life. Many of us have melanoma that started in a limb, including me (so far confined to a limb, my right leg), and this past winter, my melanoma was growing out of control, I had many many cutaneous and sub cutaneous tumors, individual tumors and huge clumps of tumors, not as severe as Eric's but still growing daily…this is scary stuff. The pictures that Eric and JIll have posted previously have stayed in my mind and I knew I had to be aggressive…thats why I was considering leg amputation, until I was enrolled in a clinical trial with Ipilimumab, and fortunately I was a complete responder. I have never been "scared" to look at Jill and Eric's pictures of his leg…I NEED to look at those pictures……they inspire me to fight harder, and to educate people as the opportunity arises in my life.

Thank you Eric and Jill, for your courage and for sharing your fight against the beast.

Vermont_Donna, stage 3a, NED

"Anonymous", you obviously are fairly new to this site not to know how greatly loved Eric and Jill are. I am sorry for the harsh backlash but you put your foot in your mouth this time!!

Melanoma kills and many, many of us on this site will die a paintful death from melanoma.That is reality. I think that I will probably die from mel (although I want 30 more years first!)

I hope when my time comes I can exhibit a fraction of the strength and courage Eric and Jill have shown.

Nicki, Stage 3b

"Anonymous", you obviously are fairly new to this site not to know how greatly loved Eric and Jill are. I am sorry for the harsh backlash but you put your foot in your mouth this time!!

Melanoma kills and many, many of us on this site will die a paintful death from melanoma.That is reality. I think that I will probably die from mel (although I want 30 more years first!)

I hope when my time comes I can exhibit a fraction of the strength and courage Eric and Jill have shown.

Nicki, Stage 3b

*warning: long and angry*

Anonymous,
You are a perfect illustration of why I merely lurk on this site, and no longer share anything of import. WHY would I want to open my feelings to someone like you? Frankly put, you aren't worth the time it would take me to type an honest emotion. Education is so much more than knowing which treatments/clinical trials are involved.

You had a choice. There was an option not to open the link. For those of us who have been educated by others to have some REAL idea of what melanoma can do, and how cruel it can be, (depending on where we are at emotionally) some chose to look, others did not. I did not, due to what’s happening with my melanoma, but thanks to people like you I no longer choose to share my life it on this site. I WILL look, but not right at the moment. So don’t bother including me in your “inappropriate and even cruel for my fellow melanoma fighters”. You don’t speak for me, and judging from the replies to Jill, you don’t speak for many.

Jill is a much nicer, gracious and kinder woman than I. This sort of thing used to be what this board was about. People sharing what they are really going through, and to be free to educate without having to be mindful of upsetting the natives. It used to be possible, because people (back when it was the MPIP) recognised that others want/need to post was valid no matter how upsetting it may be personally to someone, and we wanted to face our disease straight on. The posters own preferences and feelings were placed firmly below the needs of the poster. These days, the board has developed into a multitude of posters who think only about themselves and their needs, and an overwhelming need for reassurance, hope and encouragement. Hence why so many have held back from returning/contributing. (Kudos to those who have continued and tried to educate people, but I’m not one of them- I’ve given that up some time ago. After what I’ve been seeing for some time, I decided it was a lost cause. This place almost made me lose my faith in humanity, and the only way to regain it was to step away)

The story of Jill and Eric is not about horror. The story of his melanoma is admittedly horrible and frightening, but the people involved are the epitome of grace, determination, and love for each other. In the midst of all of this, and although in immense pain and discomfort, they are trying to get a message out there to prevent others increasing their risk of melanoma. For them it is important, and it gives their lives with melanoma some meaning which is positive. Who are you to deem that offensive?
If you are horrified by images of Eric’s melanoma, then suck it up. Instead, try replacing it with a bit of “how must it be for them?”, and stop allowing your needs to sit first on the priority list. This is about THEM, not you and your fear- they were the ones who initiated the post and warned of its graphic nature.

Honestly, are people so self-focused and selfish that they can’t see past their own needs to understand that people who aren’t “winning” their battle, should be given the “air time” on this board without having to tone down the degree their feelings or the degree to which melanoma has affected them physically? (Because of the risk of upsetting someone) Ridiculous. I find THAT offensive… along with making people feel the need to apologise if their news is distressing/ shows progression or lack of NED status. What next? Should we give the posts a rating, perhaps?
G – nothing upsetting. Questions surrounding pathology.
PG- mentions recurrence or 2nd primary discovery.
M- mentions progression or loss of NED status. Advancement to stage 4.
R- mentions imminent death/ progession to hospice care
X- mentions real emotion of difficulty dealing with advanced stage disease, or death i.e. fear
Melanoma can kill, and sometimes it’s not bittersweet and censored like the movies.

You want 'hope,support and encouragement'only? As defined by YOU?. Well, I find a wealth of encouragement, hope and support from Jill and Eric, so I guess it just depends on whether you judge those things by scans and melanoma specific results, or looking at the people and what they give, and how they deal with those things they have been dealt.

Meanwhile, let people who need to talk about dealing with their disease at a crucial stage of their lives, have their say and tell their story instead of trying to censor them, lest it upset your fragile bubble. Yes, everyone is fragile at some time or another, so given you are given a choice  to view something which has a caution and is labelled graphic, perhaps you should show a little common sense and not click on the link if it risks upsetting you.

Personally, I'd like to thank Eric and Jill- they have taught me much about myself and the person I'd like to be, and much about this disease by sharing their story. Perhaps if they'd not already taught me as much as they have about the directions this disease I can take, I'd not have known that opening that link is not what I need to do for myself at this time. As always, my thoughts are with them, and my humility at all they have gone through and continue to go through with such love for each other, and infinite grace, and love and thanks for restoring my faith in humanity.

These beautiful people deserve to be heard. They have earned it.

NicOz.  Eric is my cousin and all I can say about what you just wrote is "BRAVO BRAVO"!!  You are also in my prayers along with a lot of other people here.  May God Bless You!!

NicOz.  Eric is my cousin and all I can say about what you just wrote is "BRAVO BRAVO"!!  You are also in my prayers along with a lot of other people here.  May God Bless You!!

Kudos to you NicOz, well said!

Vermont_Donna

Kudos to you NicOz, well said!

Vermont_Donna

*warning: long and angry*

Anonymous,
You are a perfect illustration of why I merely lurk on this site, and no longer share anything of import. WHY would I want to open my feelings to someone like you? Frankly put, you aren't worth the time it would take me to type an honest emotion. Education is so much more than knowing which treatments/clinical trials are involved.

You had a choice. There was an option not to open the link. For those of us who have been educated by others to have some REAL idea of what melanoma can do, and how cruel it can be, (depending on where we are at emotionally) some chose to look, others did not. I did not, due to what’s happening with my melanoma, but thanks to people like you I no longer choose to share my life it on this site. I WILL look, but not right at the moment. So don’t bother including me in your “inappropriate and even cruel for my fellow melanoma fighters”. You don’t speak for me, and judging from the replies to Jill, you don’t speak for many.

Jill is a much nicer, gracious and kinder woman than I. This sort of thing used to be what this board was about. People sharing what they are really going through, and to be free to educate without having to be mindful of upsetting the natives. It used to be possible, because people (back when it was the MPIP) recognised that others want/need to post was valid no matter how upsetting it may be personally to someone, and we wanted to face our disease straight on. The posters own preferences and feelings were placed firmly below the needs of the poster. These days, the board has developed into a multitude of posters who think only about themselves and their needs, and an overwhelming need for reassurance, hope and encouragement. Hence why so many have held back from returning/contributing. (Kudos to those who have continued and tried to educate people, but I’m not one of them- I’ve given that up some time ago. After what I’ve been seeing for some time, I decided it was a lost cause. This place almost made me lose my faith in humanity, and the only way to regain it was to step away)

The story of Jill and Eric is not about horror. The story of his melanoma is admittedly horrible and frightening, but the people involved are the epitome of grace, determination, and love for each other. In the midst of all of this, and although in immense pain and discomfort, they are trying to get a message out there to prevent others increasing their risk of melanoma. For them it is important, and it gives their lives with melanoma some meaning which is positive. Who are you to deem that offensive?
If you are horrified by images of Eric’s melanoma, then suck it up. Instead, try replacing it with a bit of “how must it be for them?”, and stop allowing your needs to sit first on the priority list. This is about THEM, not you and your fear- they were the ones who initiated the post and warned of its graphic nature.

Honestly, are people so self-focused and selfish that they can’t see past their own needs to understand that people who aren’t “winning” their battle, should be given the “air time” on this board without having to tone down the degree their feelings or the degree to which melanoma has affected them physically? (Because of the risk of upsetting someone) Ridiculous. I find THAT offensive… along with making people feel the need to apologise if their news is distressing/ shows progression or lack of NED status. What next? Should we give the posts a rating, perhaps?
G – nothing upsetting. Questions surrounding pathology.
PG- mentions recurrence or 2nd primary discovery.
M- mentions progression or loss of NED status. Advancement to stage 4.
R- mentions imminent death/ progession to hospice care
X- mentions real emotion of difficulty dealing with advanced stage disease, or death i.e. fear
Melanoma can kill, and sometimes it’s not bittersweet and censored like the movies.

You want 'hope,support and encouragement'only? As defined by YOU?. Well, I find a wealth of encouragement, hope and support from Jill and Eric, so I guess it just depends on whether you judge those things by scans and melanoma specific results, or looking at the people and what they give, and how they deal with those things they have been dealt.

Meanwhile, let people who need to talk about dealing with their disease at a crucial stage of their lives, have their say and tell their story instead of trying to censor them, lest it upset your fragile bubble. Yes, everyone is fragile at some time or another, so given you are given a choice  to view something which has a caution and is labelled graphic, perhaps you should show a little common sense and not click on the link if it risks upsetting you.

Personally, I'd like to thank Eric and Jill- they have taught me much about myself and the person I'd like to be, and much about this disease by sharing their story. Perhaps if they'd not already taught me as much as they have about the directions this disease I can take, I'd not have known that opening that link is not what I need to do for myself at this time. As always, my thoughts are with them, and my humility at all they have gone through and continue to go through with such love for each other, and infinite grace, and love and thanks for restoring my faith in humanity.

These beautiful people deserve to be heard. They have earned it.

Eric and Jill- I don't know you but I feel like I do and i admire your courage and pray for you daily. 

Ditto NicOz!!!!!!! 

Michelle

Eric and Jill- I don't know you but I feel like I do and i admire your courage and pray for you daily. 

Ditto NicOz!!!!!!! 

Michelle

I'm not going to beat up on you Anon because I completely get what you are saying. 

However, Jeff Patterson first created this site prior to the MRF as The Melanoma Patient Information Page with the mantra that knowledge is power.

Even though I would hardly pretend to speak for Jeff, I am left to think that he also wanted each patient and caregiver to have a voice; not only in life, but in death……………and Eric has earned his voice here as has Jill.

Of course support for one another is important, but remember………..Melanoma Patient Information.

Many visitors here want to know how surgery goes, or treatments go; because they have trouble coping with unknowns, yet unspoken, is also the dark thoughts of just what will happen when  the complications of melanoma overpower life.

Offended as you may be, can you even begin to POSSIBLY imagine how offended THEY feel  knowing that Eric is  at the end of his life?

Yes, this place is about support, but it is also about reality………and the reality is some will die and it just as important they have their voce in death as it is yours in life.

Another thing Jeff Patterson always said when there was a dustup here was: "take what you want and leave the rest".

Good advice methinks.

Cheers,

Charlie S

Well said Charlie.

Well said Charlie.

I'm not going to beat up on you Anon because I completely get what you are saying. 

However, Jeff Patterson first created this site prior to the MRF as The Melanoma Patient Information Page with the mantra that knowledge is power.

Even though I would hardly pretend to speak for Jeff, I am left to think that he also wanted each patient and caregiver to have a voice; not only in life, but in death……………and Eric has earned his voice here as has Jill.

Of course support for one another is important, but remember………..Melanoma Patient Information.

Many visitors here want to know how surgery goes, or treatments go; because they have trouble coping with unknowns, yet unspoken, is also the dark thoughts of just what will happen when  the complications of melanoma overpower life.

Offended as you may be, can you even begin to POSSIBLY imagine how offended THEY feel  knowing that Eric is  at the end of his life?

Yes, this place is about support, but it is also about reality………and the reality is some will die and it just as important they have their voce in death as it is yours in life.

Another thing Jeff Patterson always said when there was a dustup here was: "take what you want and leave the rest".

Good advice methinks.

Cheers,

Charlie S

Dear Mr Or Mrs Anon –

If you dont like the post by Jill about the REALITIES of melanoma – get off the post!! dont look at the pics after she WARNED you that they are graphic and dont comment about how YOU think its Inappropriate.

This may be a site for advice and to share encouraging words, but it is ALSO a site about MELANOMA!!  If you dont like it, leave.

What JIll and Eric are doing is BEYOND COURAGEOUS! They are showing the true realities of what this disease can do, and i for one (but there seem to be plenty of others)  think this is great!! NO one told you you had to click the link… but your own curiosity got the best of you and what you saw probably scared you so bad you had to change your undies.

This site is NOT HERE FOR ANYONE TO ABUSE another patient or member… that time is long gone, but since you, like so many others, cant seem to UNDERSTAND this, you attempt to bring back the past by being RUDE< NEGATIVE< AND HURTFUL!!!

I dont know who told you that having melanoma had anything to do with SUNSHINE, but you certainly need to hop back on the crazy train. THIS is exactly what this site is for!! Melanoma is DEATH…. and if these pics arent showed to people, some will continue to think "its just skin cancer"   

This site is for EVERYONE and jill did the exact right thing. She didnt put it in your face, she gave you the OPTION to follow links and see for yourself just what MELANOMA really does to the body. Its YOUR fault that you followed the link, and YOUR fault for being scared to death…. HERES A LITTLE INSIGHT………….. WERE ALL SCARED!!! Eric was diagnosed 3 months after me, mole in the same area, same stage, same treatment… yet when i look at the pics…. I dont freak out. I get scared thinking that could be me… then I SUPPORT A MAN WHO IS IN THE FIGHT OF HIS LIFE!!!!!

Seriously ANON….. grow some balls and tell us who you are… otherwise… get the hell out…… no one wants the kind of 'support" you are offering. you seem to be extremely selfish and ill-informed about what this site is REALLY ABOUT!

Dear Mr Or Mrs Anon –

If you dont like the post by Jill about the REALITIES of melanoma – get off the post!! dont look at the pics after she WARNED you that they are graphic and dont comment about how YOU think its Inappropriate.

This may be a site for advice and to share encouraging words, but it is ALSO a site about MELANOMA!!  If you dont like it, leave.

What JIll and Eric are doing is BEYOND COURAGEOUS! They are showing the true realities of what this disease can do, and i for one (but there seem to be plenty of others)  think this is great!! NO one told you you had to click the link… but your own curiosity got the best of you and what you saw probably scared you so bad you had to change your undies.

This site is NOT HERE FOR ANYONE TO ABUSE another patient or member… that time is long gone, but since you, like so many others, cant seem to UNDERSTAND this, you attempt to bring back the past by being RUDE< NEGATIVE< AND HURTFUL!!!

I dont know who told you that having melanoma had anything to do with SUNSHINE, but you certainly need to hop back on the crazy train. THIS is exactly what this site is for!! Melanoma is DEATH…. and if these pics arent showed to people, some will continue to think "its just skin cancer"   

This site is for EVERYONE and jill did the exact right thing. She didnt put it in your face, she gave you the OPTION to follow links and see for yourself just what MELANOMA really does to the body. Its YOUR fault that you followed the link, and YOUR fault for being scared to death…. HERES A LITTLE INSIGHT………….. WERE ALL SCARED!!! Eric was diagnosed 3 months after me, mole in the same area, same stage, same treatment… yet when i look at the pics…. I dont freak out. I get scared thinking that could be me… then I SUPPORT A MAN WHO IS IN THE FIGHT OF HIS LIFE!!!!!

Seriously ANON….. grow some balls and tell us who you are… otherwise… get the hell out…… no one wants the kind of 'support" you are offering. you seem to be extremely selfish and ill-informed about what this site is REALLY ABOUT!

Anon, you had fair warning there would be graphic pix.  Many here have posted pictures of subcutaneous tumors, but a LOT (I'd say the majority here) have no idea what they look like and want to know.  I even posted horrible sub-Q pix of my dear friend, Glenda, before she passed away.  SHE wanted me to post the pix because she was asked numerous times to show what her sub-Q's looked like, and in the end, wanted to educate as many as possible about sub-Q's.  That was her last request from me, and, come hell or high water, I was going to carry out her wishes.  It was the least I could do for HER.  And hopefully, it gave other patients, who wanted to know what they were, a chance to see for themselves.  It wasn't easy seeing and taking Glenda's pictures, but that was HER request.  I posted them WITH WARNING, without telling anyone WHO they belonged to, but Glenda, herself, posted and said they were hers.

You DO have a right to your personal opinion, but the rest have the right to know what they could possibly deal with in the future.  Not everyone with melanoma gets sub-Q's but for those that do, many WANT to see what they're like.  And they are ALL different, too.  Some are extremely graphic (like Eric's and Glenda's), and some looked like chicken-pox or mosquito bites, or just plain skin-colored bumps/lumps.

MPIP (as it used to be called) is one of the best places online for support, encouragement, education, awareness, and REALITY of this damned disease from REAL patients fighting to LIVE.  I'm one of those that HAS to know all the facts–the good, the bad, the ugly… I want to know everything about melanoma—it's the only way I can deal with my own Stage 2B diagnosis (10+ years NED and counting).  I can't fight something if I don't know what I'm fighting.  Everyone is different–some are like me and have to know everything; others don't want to know ANYTHING.  If you don't want to know, then don't look!  Again, you were warned, but you CHOSE to open the pictures.  If you can't handle it, you need to cherry-pick which posts you want to open and which ones you don't. 

In the last 10 years, I've met (online and in person) so many wonderful "forever friends" from this place via emails and get-togethers (or 'bashes" as we call them—mainly just a big party with fun had by all).  We honor those who have gone before us in some way (balloons, flowers, rocks, candles, etc.); we honor those that are in the midst of battle; we honor those who are NED; we honor those who are survivors of someone they loved and lost.   But the rest of the time, it's just a great group of people having FUN and LIVING with melanoma.  Yes, it hurts like hell to lose a friend we've met, but I've always said and believe I am so BLESSED to have met them at all.  And the only reason we met was because of this rotten bastard of a disease.  If there's ONE thing good about mel, it's the precious people I've met. 

I'm going to assume you are newly diagnosed (and apologize if I'm wrong).  I know, for me, I thought I was dying right then, like THAT DAY that I heard the words "melanoma" and "cancer".  It took about a year for me to get over that (and antidepressants), and realize I probably WILL die from this disease (or another cancer—I'm a smoker), but it ain't gonna be TODAY.  I might die today in a wreck taking my grandgirlies to the water park (with lots of sunscreen), but it won't be from melasuckanoma.

Melanoma is still melanoma, whether it's from the sun on the skin, ocular, acral or mucosal (those occuring on the palms, soles, in the mouth, nose, anus, and female genitals, and under or near toenails or fingernails).  It's a DEADLY disease, but if you stay here long enough, you'll see we have many MANY Stage 4 SURVIVORS.  Long-time survivors!   There is ALWAYS HOPE.  You can get and take from this board whatever you need for support and encouragement.  But as you can see, a lot of people love Jill and Eric, and have followed Eric's journey from day one.  I am THANKFUL that most here don't sugar-coat the reality of this beast.  It is what it is, and it ain't pretty.

I wish you the best in your own journey with melanoma.   I also hope that soon, you'll find a way to live life to the fullest, make friends here or locally dealing with the same, and find hope and peace, in spite of melanoma.

~Lisa~

Anon, you had fair warning there would be graphic pix.  Many here have posted pictures of subcutaneous tumors, but a LOT (I'd say the majority here) have no idea what they look like and want to know.  I even posted horrible sub-Q pix of my dear friend, Glenda, before she passed away.  SHE wanted me to post the pix because she was asked numerous times to show what her sub-Q's looked like, and in the end, wanted to educate as many as possible about sub-Q's.  That was her last request from me, and, come hell or high water, I was going to carry out her wishes.  It was the least I could do for HER.  And hopefully, it gave other patients, who wanted to know what they were, a chance to see for themselves.  It wasn't easy seeing and taking Glenda's pictures, but that was HER request.  I posted them WITH WARNING, without telling anyone WHO they belonged to, but Glenda, herself, posted and said they were hers.

You DO have a right to your personal opinion, but the rest have the right to know what they could possibly deal with in the future.  Not everyone with melanoma gets sub-Q's but for those that do, many WANT to see what they're like.  And they are ALL different, too.  Some are extremely graphic (like Eric's and Glenda's), and some looked like chicken-pox or mosquito bites, or just plain skin-colored bumps/lumps.

MPIP (as it used to be called) is one of the best places online for support, encouragement, education, awareness, and REALITY of this damned disease from REAL patients fighting to LIVE.  I'm one of those that HAS to know all the facts–the good, the bad, the ugly… I want to know everything about melanoma—it's the only way I can deal with my own Stage 2B diagnosis (10+ years NED and counting).  I can't fight something if I don't know what I'm fighting.  Everyone is different–some are like me and have to know everything; others don't want to know ANYTHING.  If you don't want to know, then don't look!  Again, you were warned, but you CHOSE to open the pictures.  If you can't handle it, you need to cherry-pick which posts you want to open and which ones you don't. 

In the last 10 years, I've met (online and in person) so many wonderful "forever friends" from this place via emails and get-togethers (or 'bashes" as we call them—mainly just a big party with fun had by all).  We honor those who have gone before us in some way (balloons, flowers, rocks, candles, etc.); we honor those that are in the midst of battle; we honor those who are NED; we honor those who are survivors of someone they loved and lost.   But the rest of the time, it's just a great group of people having FUN and LIVING with melanoma.  Yes, it hurts like hell to lose a friend we've met, but I've always said and believe I am so BLESSED to have met them at all.  And the only reason we met was because of this rotten bastard of a disease.  If there's ONE thing good about mel, it's the precious people I've met. 

I'm going to assume you are newly diagnosed (and apologize if I'm wrong).  I know, for me, I thought I was dying right then, like THAT DAY that I heard the words "melanoma" and "cancer".  It took about a year for me to get over that (and antidepressants), and realize I probably WILL die from this disease (or another cancer—I'm a smoker), but it ain't gonna be TODAY.  I might die today in a wreck taking my grandgirlies to the water park (with lots of sunscreen), but it won't be from melasuckanoma.

Melanoma is still melanoma, whether it's from the sun on the skin, ocular, acral or mucosal (those occuring on the palms, soles, in the mouth, nose, anus, and female genitals, and under or near toenails or fingernails).  It's a DEADLY disease, but if you stay here long enough, you'll see we have many MANY Stage 4 SURVIVORS.  Long-time survivors!   There is ALWAYS HOPE.  You can get and take from this board whatever you need for support and encouragement.  But as you can see, a lot of people love Jill and Eric, and have followed Eric's journey from day one.  I am THANKFUL that most here don't sugar-coat the reality of this beast.  It is what it is, and it ain't pretty.

I wish you the best in your own journey with melanoma.   I also hope that soon, you'll find a way to live life to the fullest, make friends here or locally dealing with the same, and find hope and peace, in spite of melanoma.

~Lisa~

I've been gone close to a month and was shocked that my first post to read coming back included this annomyous reply. Melanoma is ugly. That is the reality of it and I have so often admired the clear love Eric & Jill hold for each other that is so strong that mel can't even cast a shadow on it!

My current reality is that after six months of a drug trial and being a complete responder, 2 lumbar and 1 thoracic lesion left me mostly paralyzed from the waist down and in intense upper body nerve pain in 72 hours.

Melanoma is ugly and I have to wonder if my 'clean but paralyzed' version would be more acceptable to anon? I know it's scary – we've all been terrified at some point or other by diagnosis and most of us have found a way to move on and be joyful – something I always feel from Jill & Eric – JOY!

So what's up for me now? I'm a resident at UNM Cancer Center and just had my 7th round of External Beam Radiation. Mostly I'm in awe of technology that allows them to map a beam to target only 3 lesions that undoubtedly came from last year's brain met, while doing minimal damage to spine and nerve tissue.

After more than a year I still have nonew  brain recurrance and 4 months out from completing chemo, no distant recurrance other than spinal fluid. In my book that's not a bad deal!

Today I am rejoicing at having enough strength in my left hand to activate my keyboard keys.

So Eric & Jill, please keep the love coming…I for one can take it and need it!

I've been gone close to a month and was shocked that my first post to read coming back included this annomyous reply. Melanoma is ugly. That is the reality of it and I have so often admired the clear love Eric & Jill hold for each other that is so strong that mel can't even cast a shadow on it!

My current reality is that after six months of a drug trial and being a complete responder, 2 lumbar and 1 thoracic lesion left me mostly paralyzed from the waist down and in intense upper body nerve pain in 72 hours.

Melanoma is ugly and I have to wonder if my 'clean but paralyzed' version would be more acceptable to anon? I know it's scary – we've all been terrified at some point or other by diagnosis and most of us have found a way to move on and be joyful – something I always feel from Jill & Eric – JOY!

So what's up for me now? I'm a resident at UNM Cancer Center and just had my 7th round of External Beam Radiation. Mostly I'm in awe of technology that allows them to map a beam to target only 3 lesions that undoubtedly came from last year's brain met, while doing minimal damage to spine and nerve tissue.

After more than a year I still have nonew  brain recurrance and 4 months out from completing chemo, no distant recurrance other than spinal fluid. In my book that's not a bad deal!

Today I am rejoicing at having enough strength in my left hand to activate my keyboard keys.

So Eric & Jill, please keep the love coming…I for one can take it and need it!

Dear Carol,

I have been on the MPIP board for just about 5 years. I feel that in my early years on the board, through individual's posts, MPIP's DID (and continue to) offer encouragement and hope, and also offered information, education, and updates through their posts about their own or a loved one's journey/battle with melanoma, and what treatments they were doing or had tried.

I have seen a gradual or somewhat subtle change to seeing more people posting about their new diagnosis of melanoma, whatever stage and while wanting information needing a whole lot of reassurance that they are not going to die from this….and so whenever there are posts from people in the end stage battle against the beast, this is the stark hard reality that many find so difficult to face or hear about. Yes many of the new folks are YOUNGER and may have young families, and that is scary beyond belief. But no less scary for me or others. I'm in my mid 50's with grown children now, but when I started my journey I was a single mom with four kids, two of them in high school. We all feel the terror of "not being there" for our children to see them through growing up and being "launched". Or not being here in life to enjoy grandchildren and friends, and LIFE.

Yes we need hope and encouragement of course but we need to KNOW about melanoma, what it can do, what treatments are out there, etc. Posters to MPIP are generally kind and caring people, and incredibly knowledgeable. Once in a while we have someone who feels very terrified and who lashes out unkindly and nobody likes to see that.This board is available to people to come to by their own FREE CHOICE, and what someone else said, that is so pertinant, "take what you want and leave the rest". I am a BETTER, MORE INFORMED CANCER PATIENT because of this board. Because of people like Eric and Jill. I can more intelligently discuss my disease and treatments with my medical team and with my family and friends.

So I just wanted to say that this board was never a place where there was no support or encouragement…it has been here right along….

I personally think that your posts/responses are excellent, and are also very warm and fuzzy and supportive for people. Many people seem to really enjoy and want the prayers that you write for them. I do not have a problem with that, but I would like to say that if a newcomer to MPIP reads the posts and assumes this is a "religious" site, that that person may not come back. As you know this board has world wide posters and people are spiritual, religious, atheists, etc. I am not saying to stop the prayers you write, but just to be aware that not all people feel comfortable with that.

Vermont_Donna, stage 3a, NED

Hi Donna and all who took the time to email & facebook me,

First, I want to thank you for contacting me. Like Donna, you offered a lot of insights that I really appreciate. Even those insights that made me go "uh-oh."

Second, I want to apologize to everybody. It seems I've accomplished a lot of things I never intended to accomplish, sent people away that I never meant to send away, and silenced voices that should never have been silenced while somehow encouraging a "reality" that wasn't real.

I guess Anonymous achieved something good after all. Who saw it coming?

I really do appreciate every honest voice and you have been heard. Honesty I can handle. I got carried away and got gung-ho. I did try to only offer prayers to those who posted and referred to prayer, though admittedly that didn't always happen. To those who received unwanted prayer or went away from this board because they thought this was a religious place, I am sorry.

I do not want this to start posts going Yeah or No please. Again, my email is [email protected] if you'd like to express your relief or ask for hope, encouragement or prayer or contact me through facebook.

I will refrain from the prayers unless they are specifically requested even if in a general sort of way. I will only offer hope and encouragement when it is asked for even if in a general way. Promise.

This board is great and what you each have to say needs to be heard and your realities need to be shared. I never meant to dampen that…I need to hear them too!

And, lands sakes, I'm a pastor, I walk people through dying and death a lot. I've been a Hospice Chaplain. I know this reality that many on here are facing. I've heard the fears, terrors, questions, doubts, held the hands,and believe it or not, I'm pretty good at walking with people during the last part of their journey. You are too! I never intended to stop that sharing and listening from happening and make that reality tamed somehow.

So, again, please, no responses of any kind on here. Let's stick to what this is meant to be about. You've got my email if you want to use it and facebook is available.

And, no, lest anybody dare think it, my feelings are not hurt…I've got a thick skin that can take it. I got off track and took this board with me sometimes. For those of you who were kind enough to contact me before I did further harm, I thank you.

To all, I want to be of help just like everyone else here.

Grace and peace,

Carol

Hi Donna and all who took the time to email & facebook me,

First, I want to thank you for contacting me. Like Donna, you offered a lot of insights that I really appreciate. Even those insights that made me go "uh-oh."

Second, I want to apologize to everybody. It seems I've accomplished a lot of things I never intended to accomplish, sent people away that I never meant to send away, and silenced voices that should never have been silenced while somehow encouraging a "reality" that wasn't real.

I guess Anonymous achieved something good after all. Who saw it coming?

I really do appreciate every honest voice and you have been heard. Honesty I can handle. I got carried away and got gung-ho. I did try to only offer prayers to those who posted and referred to prayer, though admittedly that didn't always happen. To those who received unwanted prayer or went away from this board because they thought this was a religious place, I am sorry.

I do not want this to start posts going Yeah or No please. Again, my email is [email protected] if you'd like to express your relief or ask for hope, encouragement or prayer or contact me through facebook.

I will refrain from the prayers unless they are specifically requested even if in a general sort of way. I will only offer hope and encouragement when it is asked for even if in a general way. Promise.

This board is great and what you each have to say needs to be heard and your realities need to be shared. I never meant to dampen that…I need to hear them too!

And, lands sakes, I'm a pastor, I walk people through dying and death a lot. I've been a Hospice Chaplain. I know this reality that many on here are facing. I've heard the fears, terrors, questions, doubts, held the hands,and believe it or not, I'm pretty good at walking with people during the last part of their journey. You are too! I never intended to stop that sharing and listening from happening and make that reality tamed somehow.

So, again, please, no responses of any kind on here. Let's stick to what this is meant to be about. You've got my email if you want to use it and facebook is available.

And, no, lest anybody dare think it, my feelings are not hurt…I've got a thick skin that can take it. I got off track and took this board with me sometimes. For those of you who were kind enough to contact me before I did further harm, I thank you.

To all, I want to be of help just like everyone else here.

Grace and peace,

Carol

Dear Carol,

I have been on the MPIP board for just about 5 years. I feel that in my early years on the board, through individual's posts, MPIP's DID (and continue to) offer encouragement and hope, and also offered information, education, and updates through their posts about their own or a loved one's journey/battle with melanoma, and what treatments they were doing or had tried.

I have seen a gradual or somewhat subtle change to seeing more people posting about their new diagnosis of melanoma, whatever stage and while wanting information needing a whole lot of reassurance that they are not going to die from this….and so whenever there are posts from people in the end stage battle against the beast, this is the stark hard reality that many find so difficult to face or hear about. Yes many of the new folks are YOUNGER and may have young families, and that is scary beyond belief. But no less scary for me or others. I'm in my mid 50's with grown children now, but when I started my journey I was a single mom with four kids, two of them in high school. We all feel the terror of "not being there" for our children to see them through growing up and being "launched". Or not being here in life to enjoy grandchildren and friends, and LIFE.

Yes we need hope and encouragement of course but we need to KNOW about melanoma, what it can do, what treatments are out there, etc. Posters to MPIP are generally kind and caring people, and incredibly knowledgeable. Once in a while we have someone who feels very terrified and who lashes out unkindly and nobody likes to see that.This board is available to people to come to by their own FREE CHOICE, and what someone else said, that is so pertinant, "take what you want and leave the rest". I am a BETTER, MORE INFORMED CANCER PATIENT because of this board. Because of people like Eric and Jill. I can more intelligently discuss my disease and treatments with my medical team and with my family and friends.

So I just wanted to say that this board was never a place where there was no support or encouragement…it has been here right along….

I personally think that your posts/responses are excellent, and are also very warm and fuzzy and supportive for people. Many people seem to really enjoy and want the prayers that you write for them. I do not have a problem with that, but I would like to say that if a newcomer to MPIP reads the posts and assumes this is a "religious" site, that that person may not come back. As you know this board has world wide posters and people are spiritual, religious, atheists, etc. I am not saying to stop the prayers you write, but just to be aware that not all people feel comfortable with that.

Vermont_Donna, stage 3a, NED

Carol, I don't think there has ever been a time when hope and encouragement were not a part of this board, along with the best information available anywhere.

I've been coming here since 2002, when my husband was diagnosed. He passed away nearly 3 years ago. Now, I mostly just read, and rarely post, but this place has become an indelible part of me, as a result of the friendships and love (and yes, squabbles and pi$$ing contests) that I found here.

It's true that for some of us, hope and encouragement don't necessarily come from religion and prayer, but just from the open support of others who share our journeys. (Personally, I find open displays of religion and prayer discomfitting, much more so than graphic photos, but that's just me.) Religious beliefs are such a personal matter, and in a way are much like food – what some devour, others find unpalatable. If there comes a time when the majority of posts end with a prayer, or a call to eat more brussel sprouts, it can feel exclusionary, and will be apt to turn some away, even though that is not the intent at all. Sometimes, information alone IS encouragement. Potato, potahto.

Still, I would reccommend this site to anyone dealing with mel (and did so recently).  A link to this site should be in the paperwork every mel specialist gives to his/her patients.

All the best, to all of us who deal with this ugly disease.

Laura

Carol, I don't think there has ever been a time when hope and encouragement were not a part of this board, along with the best information available anywhere.

I've been coming here since 2002, when my husband was diagnosed. He passed away nearly 3 years ago. Now, I mostly just read, and rarely post, but this place has become an indelible part of me, as a result of the friendships and love (and yes, squabbles and pi$$ing contests) that I found here.

It's true that for some of us, hope and encouragement don't necessarily come from religion and prayer, but just from the open support of others who share our journeys. (Personally, I find open displays of religion and prayer discomfitting, much more so than graphic photos, but that's just me.) Religious beliefs are such a personal matter, and in a way are much like food – what some devour, others find unpalatable. If there comes a time when the majority of posts end with a prayer, or a call to eat more brussel sprouts, it can feel exclusionary, and will be apt to turn some away, even though that is not the intent at all. Sometimes, information alone IS encouragement. Potato, potahto.

Still, I would reccommend this site to anyone dealing with mel (and did so recently).  A link to this site should be in the paperwork every mel specialist gives to his/her patients.

All the best, to all of us who deal with this ugly disease.

Laura

Karen, you had scalp radiation and your doctors didn't tell you about the PERMANENT baldness. Shame on them.

My doctors (oncologist and radiology onc) told me that there was almost zero chance of hair returning. Mine has not returned at all. Now I pick out the little tiny hairs that died but didn't fall out.

The worst part is that I still have SOME hair. Not enough to grow out and cover my 80% bald head. Now I have to shave the hair part so the whole thing is bald or it's just tooooo bizarre.

My last radiation treatment was June 1st of this year and my scalp is still somewhat sore, although not too much. I go bald in the house but wear scarves when I go outside. I hate it. In the next few months I will try to do the wig thing. I understand the American Cancer Society will give you a free wig and a fitting. I think the wigs are used. I hope not dead cancer patients who gave the wig back. Gross.

Hoping the best for you.

Nicki, Stage 3b, scalp

Nicki, they all said: "We're not sure, sometimes it grows back after several months." because the strongest radiation was to my temple, the scalp had the least.  NOT!  my insurance paid for a wig, but I don't wear it much.  I can usually get away with the female version of the comb-over.  (LOL, really just a farther-than-usual side-part!)

Take care,

Karen

Nicki, they all said: "We're not sure, sometimes it grows back after several months." because the strongest radiation was to my temple, the scalp had the least.  NOT!  my insurance paid for a wig, but I don't wear it much.  I can usually get away with the female version of the comb-over.  (LOL, really just a farther-than-usual side-part!)

Take care,

Karen

Karen, you had scalp radiation and your doctors didn't tell you about the PERMANENT baldness. Shame on them.

My doctors (oncologist and radiology onc) told me that there was almost zero chance of hair returning. Mine has not returned at all. Now I pick out the little tiny hairs that died but didn't fall out.

The worst part is that I still have SOME hair. Not enough to grow out and cover my 80% bald head. Now I have to shave the hair part so the whole thing is bald or it's just tooooo bizarre.

My last radiation treatment was June 1st of this year and my scalp is still somewhat sore, although not too much. I go bald in the house but wear scarves when I go outside. I hate it. In the next few months I will try to do the wig thing. I understand the American Cancer Society will give you a free wig and a fitting. I think the wigs are used. I hope not dead cancer patients who gave the wig back. Gross.

Hoping the best for you.

Nicki, Stage 3b, scalp

Dear Karen,

For what it's worth, my spouse (stage 4) also had radiation to the scalp, lost all the hair in that area, but it did return within a few months.  I suppose everyone is different.  Perhaps your doctors didn't give you a certain YES or NO answer about the hair loss being potentially permanent because they did not know.  I would appreciate an honest "I don't know" from some of my spouse's doctors when they really don't know.  It is maddening to discover later that the doctors don't know everything!

All the best to you in your fight.

With kindest regards,

Chris

Dear Karen,

For what it's worth, my spouse (stage 4) also had radiation to the scalp, lost all the hair in that area, but it did return within a few months.  I suppose everyone is different.  Perhaps your doctors didn't give you a certain YES or NO answer about the hair loss being potentially permanent because they did not know.  I would appreciate an honest "I don't know" from some of my spouse's doctors when they really don't know.  It is maddening to discover later that the doctors don't know everything!

All the best to you in your fight.

With kindest regards,

Chris