› Forums › General Melanoma Community › TERRIFIED! Newly diagnosed – stage 3abc?
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DZnDef.
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- September 29, 2015 at 9:01 pm
Hey everyone,
I was just diagnosed with MM end of July. Had the SLB in August, One node, out of three, came back with micromets – then had WAE/reconstruction surgery on face that left some pretty awful scars. My tumor was thick, 1.3 mm, uncerated with a O mitotic rate. Petscan clear for any distant metasteses but showed a possible second cancerous node right next to where the first node was removed. A second opinon on the the neck dissection surgery suggested that the second node could be "reactive?" Not exactly sure how it could be coming up cancerous if it's not but I hope to end up a IIIa – there's a surreal statement there! I will find out after my neck dissection surgery this coming Monday. BIG FEAR THERE!
To say that i am terrified about the future is an understatement. The first month I could hardly work or move. I was in shock I think. I spent far too much time online triying to decipher and figure out my new "normal." All illusions of certainty are gone. I am afraid most of the day. I am seeing a therapist and taking ativan and a sleeping pill but I just don't know how I am going to make it through all of this. You see I have spent most of my almost 50 years of life in fear and sadness — over things now that seem insignificant, to say the least! Now, there is something to really fear and be sad about and I just don't know how folks get through this. I am a worrier by nature and not so religious, although, I have been working on my spirituality over the years.
Today, I am stuck in self pity, anxiety, and stress about what is to come. I am beating myself up about not addressing that mole sooner! Why did I wait? What was I thinking? I am afraid for me, my husband, and my kids.I know that each letter after that 3 staging is vitally critally for overall recurrence and survival rates and I'm jsut so terrified — not that IIIa offers any assurances either really.
If anyone can offer words of wisdom, support or general input, they would be most graciously appreciated. How did you deal with your initial diagnosis? How are you dealing with it today? Does it get any easier knowing it could come back anytime? I feel like I'm having a nervous breakdown each day.
I hope to hear back.
Peace,
Michele
- Replies
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- September 29, 2015 at 9:17 pm
Hi Michele,
Im stage 3b mm. I got the news in 2013 a month before my son was born. I'm a Christian but I still cried out to God. It just so happened that my church had done a series on "Where is God when life is a pain" it was invaluable in keeping my eternal perspective. It might help you as well-www.sunnybrookchurch.org. Go to messages then click sermon archive then page down to load more sermons and click on "Hurt".. The pastor does a great job in applying the Bible to our cancer. Hope it helps. It's worth listening to-I was where you are. It is still on my mind, but lessens each day. God has great plans for you. People need and love you! I've got a 2yr old and a 4 year old and they need a dad.
Toby
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- September 29, 2015 at 9:17 pm
Hi Michele,
Im stage 3b mm. I got the news in 2013 a month before my son was born. I'm a Christian but I still cried out to God. It just so happened that my church had done a series on "Where is God when life is a pain" it was invaluable in keeping my eternal perspective. It might help you as well-www.sunnybrookchurch.org. Go to messages then click sermon archive then page down to load more sermons and click on "Hurt".. The pastor does a great job in applying the Bible to our cancer. Hope it helps. It's worth listening to-I was where you are. It is still on my mind, but lessens each day. God has great plans for you. People need and love you! I've got a 2yr old and a 4 year old and they need a dad.
Toby
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- September 29, 2015 at 9:17 pm
Hi Michele,
Im stage 3b mm. I got the news in 2013 a month before my son was born. I'm a Christian but I still cried out to God. It just so happened that my church had done a series on "Where is God when life is a pain" it was invaluable in keeping my eternal perspective. It might help you as well-www.sunnybrookchurch.org. Go to messages then click sermon archive then page down to load more sermons and click on "Hurt".. The pastor does a great job in applying the Bible to our cancer. Hope it helps. It's worth listening to-I was where you are. It is still on my mind, but lessens each day. God has great plans for you. People need and love you! I've got a 2yr old and a 4 year old and they need a dad.
Toby
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- September 29, 2015 at 9:31 pm
Michele – totally understand your situation. The plot is very familiar…start with localized removal to full surgeries over the next several weeks and the news seemingly getting worse by the week. I can't tell you how many times I cried myself to sleep (and I rarely cry for any reason). It took about 3-4 months before I could settle myself down to the point of seeing any kind of future.
So yes your feeling are completely normal given the situation. BUT it will get better. Think about this as a completely new chapter in your life…don't presume what you had will ever be quite the same in terms of your body or your outlook…but there is more life to be lived.
Having said all that, while I am being heavily monitored (as well on an adjunctive therapy Interferon) with both PET and MRI scans. (And I just had an MRI brain scan yesterday and all is good for now). I work full time, travel with my job, and very importantly take beach vacations with my wife where we leave the worries behind.
The good news is that there are so many new drugs coming out (some just in the last few months…some expected to be approved before the end of the year) that a Melanoma diagnosis isn't a death sentence. I am constantly looking at the statistics but you need to realize that the stats are quite outdated and when these new drugs are fully evaluated…I suspect that the whole outlook will be considerably much more favorable.
Welcome to the forum…and keep in touch.
Best wishes.
Michel
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- September 29, 2015 at 9:31 pm
Michele – totally understand your situation. The plot is very familiar…start with localized removal to full surgeries over the next several weeks and the news seemingly getting worse by the week. I can't tell you how many times I cried myself to sleep (and I rarely cry for any reason). It took about 3-4 months before I could settle myself down to the point of seeing any kind of future.
So yes your feeling are completely normal given the situation. BUT it will get better. Think about this as a completely new chapter in your life…don't presume what you had will ever be quite the same in terms of your body or your outlook…but there is more life to be lived.
Having said all that, while I am being heavily monitored (as well on an adjunctive therapy Interferon) with both PET and MRI scans. (And I just had an MRI brain scan yesterday and all is good for now). I work full time, travel with my job, and very importantly take beach vacations with my wife where we leave the worries behind.
The good news is that there are so many new drugs coming out (some just in the last few months…some expected to be approved before the end of the year) that a Melanoma diagnosis isn't a death sentence. I am constantly looking at the statistics but you need to realize that the stats are quite outdated and when these new drugs are fully evaluated…I suspect that the whole outlook will be considerably much more favorable.
Welcome to the forum…and keep in touch.
Best wishes.
Michel
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- September 29, 2015 at 9:31 pm
Michele – totally understand your situation. The plot is very familiar…start with localized removal to full surgeries over the next several weeks and the news seemingly getting worse by the week. I can't tell you how many times I cried myself to sleep (and I rarely cry for any reason). It took about 3-4 months before I could settle myself down to the point of seeing any kind of future.
So yes your feeling are completely normal given the situation. BUT it will get better. Think about this as a completely new chapter in your life…don't presume what you had will ever be quite the same in terms of your body or your outlook…but there is more life to be lived.
Having said all that, while I am being heavily monitored (as well on an adjunctive therapy Interferon) with both PET and MRI scans. (And I just had an MRI brain scan yesterday and all is good for now). I work full time, travel with my job, and very importantly take beach vacations with my wife where we leave the worries behind.
The good news is that there are so many new drugs coming out (some just in the last few months…some expected to be approved before the end of the year) that a Melanoma diagnosis isn't a death sentence. I am constantly looking at the statistics but you need to realize that the stats are quite outdated and when these new drugs are fully evaluated…I suspect that the whole outlook will be considerably much more favorable.
Welcome to the forum…and keep in touch.
Best wishes.
Michel
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- September 29, 2015 at 11:30 pm
So sorry you are going through this, Michele. First – breathe deep lots of times. You are in the worst part of the process and things will get better. You'll get more information, develop a treatment plan if necessary, and get used to the idea that you have/had melanoma. Counseling will help you develop good adaptive stress relief strategies. Exercise if you can, post here often, connect with friends and family. Go out at night and howl at the moon if that helps.
You're doing everything right just give it some time. There are many good treatments available and more being developed. I can't say everthing will be ok but you are in a good place with treatments. While you may not believe this now many people see their cancer diagnosis as a postive, life-changing event.
Fen
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- September 29, 2015 at 11:30 pm
So sorry you are going through this, Michele. First – breathe deep lots of times. You are in the worst part of the process and things will get better. You'll get more information, develop a treatment plan if necessary, and get used to the idea that you have/had melanoma. Counseling will help you develop good adaptive stress relief strategies. Exercise if you can, post here often, connect with friends and family. Go out at night and howl at the moon if that helps.
You're doing everything right just give it some time. There are many good treatments available and more being developed. I can't say everthing will be ok but you are in a good place with treatments. While you may not believe this now many people see their cancer diagnosis as a postive, life-changing event.
Fen
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- September 29, 2015 at 11:30 pm
So sorry you are going through this, Michele. First – breathe deep lots of times. You are in the worst part of the process and things will get better. You'll get more information, develop a treatment plan if necessary, and get used to the idea that you have/had melanoma. Counseling will help you develop good adaptive stress relief strategies. Exercise if you can, post here often, connect with friends and family. Go out at night and howl at the moon if that helps.
You're doing everything right just give it some time. There are many good treatments available and more being developed. I can't say everthing will be ok but you are in a good place with treatments. While you may not believe this now many people see their cancer diagnosis as a postive, life-changing event.
Fen
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- September 30, 2015 at 2:24 am
Hi Michele
Firstly, I'm sorry you find yourself here in Club Melanoma. Secondly, the main thing is: you have been diagnosed. An alternative scenario is that you hadn't gotten that mole checked, ever, and then you find yourself at stage 4 (or worse). So if there's a glass half full point of view it's that at least you have been diagnosed and are now in treatment. Just as importantly, you are taking care of your mental health as well, with ativan and counselling. I've had three thin primary melanomas and if I had to distil the whole experience into one word, that word is: fear. Just like you, I was incredibly stressed to be diagnosed with melanoma. That was about six months ago, and it DOES get better. Probably not like the good old days where illness never crosses your mind (well, not for me, yet), but the number of hours/minutes consumed by worry does drop and drop and drop. The more you can live your normal life the better (as opposed to locking yourself in a room to worry – worse still, a room with an internet connection where you can read horror stories and scare yourself silly). I don't have any silver bullet for you, a melanoma diagnosis has brought me nothing but worry, but it has eased over time and I'm not much more grateful for things that I once took for granted – simple pleasures like time with family, time with friends, little things. Reach out to people for help, just like you are doing here. You are doing all you can, just hang on in there,
Stars
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- September 30, 2015 at 2:24 am
Hi Michele
Firstly, I'm sorry you find yourself here in Club Melanoma. Secondly, the main thing is: you have been diagnosed. An alternative scenario is that you hadn't gotten that mole checked, ever, and then you find yourself at stage 4 (or worse). So if there's a glass half full point of view it's that at least you have been diagnosed and are now in treatment. Just as importantly, you are taking care of your mental health as well, with ativan and counselling. I've had three thin primary melanomas and if I had to distil the whole experience into one word, that word is: fear. Just like you, I was incredibly stressed to be diagnosed with melanoma. That was about six months ago, and it DOES get better. Probably not like the good old days where illness never crosses your mind (well, not for me, yet), but the number of hours/minutes consumed by worry does drop and drop and drop. The more you can live your normal life the better (as opposed to locking yourself in a room to worry – worse still, a room with an internet connection where you can read horror stories and scare yourself silly). I don't have any silver bullet for you, a melanoma diagnosis has brought me nothing but worry, but it has eased over time and I'm not much more grateful for things that I once took for granted – simple pleasures like time with family, time with friends, little things. Reach out to people for help, just like you are doing here. You are doing all you can, just hang on in there,
Stars
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- September 30, 2015 at 2:24 am
Hi Michele
Firstly, I'm sorry you find yourself here in Club Melanoma. Secondly, the main thing is: you have been diagnosed. An alternative scenario is that you hadn't gotten that mole checked, ever, and then you find yourself at stage 4 (or worse). So if there's a glass half full point of view it's that at least you have been diagnosed and are now in treatment. Just as importantly, you are taking care of your mental health as well, with ativan and counselling. I've had three thin primary melanomas and if I had to distil the whole experience into one word, that word is: fear. Just like you, I was incredibly stressed to be diagnosed with melanoma. That was about six months ago, and it DOES get better. Probably not like the good old days where illness never crosses your mind (well, not for me, yet), but the number of hours/minutes consumed by worry does drop and drop and drop. The more you can live your normal life the better (as opposed to locking yourself in a room to worry – worse still, a room with an internet connection where you can read horror stories and scare yourself silly). I don't have any silver bullet for you, a melanoma diagnosis has brought me nothing but worry, but it has eased over time and I'm not much more grateful for things that I once took for granted – simple pleasures like time with family, time with friends, little things. Reach out to people for help, just like you are doing here. You are doing all you can, just hang on in there,
Stars
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- September 30, 2015 at 2:41 pm
It is very hard to deal with. Mom says for me to count my blessings. She's right. Sure I wish I had pushed the doc more when I kept getting misdiagnosed for 9 months. But we have to let go of what could have been or it will drive us crazy. Sure I was angry with God. Finally when I was a hairs breath of being paralyzed I realized God never abandoned me. He was always there keeping me from being paralyzed.
Very hard to deal with this stuff but it's best to try and relax and have hope that everything is going to be alright. Fortunately treatments are better now than 5 years ago. But even from back then many on here are still here and doing fine. Have hope you will be cancer free. I've found having hope is very important to my sanity.
Artie
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- September 30, 2015 at 2:41 pm
It is very hard to deal with. Mom says for me to count my blessings. She's right. Sure I wish I had pushed the doc more when I kept getting misdiagnosed for 9 months. But we have to let go of what could have been or it will drive us crazy. Sure I was angry with God. Finally when I was a hairs breath of being paralyzed I realized God never abandoned me. He was always there keeping me from being paralyzed.
Very hard to deal with this stuff but it's best to try and relax and have hope that everything is going to be alright. Fortunately treatments are better now than 5 years ago. But even from back then many on here are still here and doing fine. Have hope you will be cancer free. I've found having hope is very important to my sanity.
Artie
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- September 30, 2015 at 2:41 pm
It is very hard to deal with. Mom says for me to count my blessings. She's right. Sure I wish I had pushed the doc more when I kept getting misdiagnosed for 9 months. But we have to let go of what could have been or it will drive us crazy. Sure I was angry with God. Finally when I was a hairs breath of being paralyzed I realized God never abandoned me. He was always there keeping me from being paralyzed.
Very hard to deal with this stuff but it's best to try and relax and have hope that everything is going to be alright. Fortunately treatments are better now than 5 years ago. But even from back then many on here are still here and doing fine. Have hope you will be cancer free. I've found having hope is very important to my sanity.
Artie
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- September 30, 2015 at 3:53 pm
Wow! I needed to read these responses to your post, Michele because I, too, stay terrified and cannot seem to shake it on most days. I love the advice others have given regarding trying to focus on the fact that it could have gone even longer without being diagnosed and to count blessings, etc. I need to practice these pointers in a big way!
Saying that, I completely understand every feeling you are describing and I felt like I was reading my own words and thoughts. It's actually my husband who was diagnosed last November, but i can't bear thinking of my life without him. He had a primary of 1.25 on the top of his head, followed by the WLE and SLNB in December. All nodes (tested from both sides of neck) were clear. We had about a month of celebrating the 1b successful surgery and he had another lesion appear about 2 inches from the scar. Ugh- intransit melanoma which moved him to stage 3b. He's had a total of 3 intransits appear on his head (both sides) and we are awaiting results on yet another biopsy of a suspicious new lesion last Tuesday.
I feel like we never get the chance to relax with these recurrences and it's terrifying! They are small detections since I constantly look at his head, which are removed with punch biopsies; however, I feel like we are just playing whack a mole! He gets scans and ultrasounds every 3 months which so far, have been clear. Hard to celebrate this even after reading the horror stories of others. I feel like melanoma is just consuming us and it's so hard to be positive. So, I get your fear and am right there with you! i
i am going to start counting my blessings though and try to appreciate every day and also the fact that he is being treated at MDA which is an hour from home. Not sure I'm liking their "watch and wait" approach but I plan to ask and beg for any ideas to try and be more aggressive. I do trust their expertise though.
Please keep us posted and hang in there! Like mentioned above, there are lots of new treatments out there for melanoma. You're not alone in this fight!
Kim
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- September 30, 2015 at 3:53 pm
Wow! I needed to read these responses to your post, Michele because I, too, stay terrified and cannot seem to shake it on most days. I love the advice others have given regarding trying to focus on the fact that it could have gone even longer without being diagnosed and to count blessings, etc. I need to practice these pointers in a big way!
Saying that, I completely understand every feeling you are describing and I felt like I was reading my own words and thoughts. It's actually my husband who was diagnosed last November, but i can't bear thinking of my life without him. He had a primary of 1.25 on the top of his head, followed by the WLE and SLNB in December. All nodes (tested from both sides of neck) were clear. We had about a month of celebrating the 1b successful surgery and he had another lesion appear about 2 inches from the scar. Ugh- intransit melanoma which moved him to stage 3b. He's had a total of 3 intransits appear on his head (both sides) and we are awaiting results on yet another biopsy of a suspicious new lesion last Tuesday.
I feel like we never get the chance to relax with these recurrences and it's terrifying! They are small detections since I constantly look at his head, which are removed with punch biopsies; however, I feel like we are just playing whack a mole! He gets scans and ultrasounds every 3 months which so far, have been clear. Hard to celebrate this even after reading the horror stories of others. I feel like melanoma is just consuming us and it's so hard to be positive. So, I get your fear and am right there with you! i
i am going to start counting my blessings though and try to appreciate every day and also the fact that he is being treated at MDA which is an hour from home. Not sure I'm liking their "watch and wait" approach but I plan to ask and beg for any ideas to try and be more aggressive. I do trust their expertise though.
Please keep us posted and hang in there! Like mentioned above, there are lots of new treatments out there for melanoma. You're not alone in this fight!
Kim
-
- September 30, 2015 at 3:53 pm
Wow! I needed to read these responses to your post, Michele because I, too, stay terrified and cannot seem to shake it on most days. I love the advice others have given regarding trying to focus on the fact that it could have gone even longer without being diagnosed and to count blessings, etc. I need to practice these pointers in a big way!
Saying that, I completely understand every feeling you are describing and I felt like I was reading my own words and thoughts. It's actually my husband who was diagnosed last November, but i can't bear thinking of my life without him. He had a primary of 1.25 on the top of his head, followed by the WLE and SLNB in December. All nodes (tested from both sides of neck) were clear. We had about a month of celebrating the 1b successful surgery and he had another lesion appear about 2 inches from the scar. Ugh- intransit melanoma which moved him to stage 3b. He's had a total of 3 intransits appear on his head (both sides) and we are awaiting results on yet another biopsy of a suspicious new lesion last Tuesday.
I feel like we never get the chance to relax with these recurrences and it's terrifying! They are small detections since I constantly look at his head, which are removed with punch biopsies; however, I feel like we are just playing whack a mole! He gets scans and ultrasounds every 3 months which so far, have been clear. Hard to celebrate this even after reading the horror stories of others. I feel like melanoma is just consuming us and it's so hard to be positive. So, I get your fear and am right there with you! i
i am going to start counting my blessings though and try to appreciate every day and also the fact that he is being treated at MDA which is an hour from home. Not sure I'm liking their "watch and wait" approach but I plan to ask and beg for any ideas to try and be more aggressive. I do trust their expertise though.
Please keep us posted and hang in there! Like mentioned above, there are lots of new treatments out there for melanoma. You're not alone in this fight!
Kim
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- September 30, 2015 at 6:13 pm
Hi Michele, so sorry that you have a reason to find yourself here. But glad that you found this group as it is a very supportive and informative one. Reading your post took me back to my own diagnosis. Sitting here feeling healthy and happy it is difficult for me to remember that I ever felt as fearful as you currently do. But yes, I definitely did. A spot was found on my lung in July 2012 but was misdiagnosed. It wasn't until a recurrence in January 2014 that I was properly diagnosed and the tumor from 2012 was reassessed as also being melanoma. What a shock! Talk abut "leaving it too long". I had gone a year and a half with no treatment (apart from the removal of that first tumor). I was freaked out. But eventually I got tired of that. As others have pointed out, I realized that I wasn't going to die tomorrow. I took some time to evaluate different doctors and different approaches that they offered. I then decided on a sequence of treatments that I would try (always open to amending it as new studies come out and depending on my own progress). But having a plan I felt comfortable with and implementing it took much of the stress away. You will find your new normal. Just give yourself a break and some time. It truly does get easier.
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- September 30, 2015 at 6:13 pm
Hi Michele, so sorry that you have a reason to find yourself here. But glad that you found this group as it is a very supportive and informative one. Reading your post took me back to my own diagnosis. Sitting here feeling healthy and happy it is difficult for me to remember that I ever felt as fearful as you currently do. But yes, I definitely did. A spot was found on my lung in July 2012 but was misdiagnosed. It wasn't until a recurrence in January 2014 that I was properly diagnosed and the tumor from 2012 was reassessed as also being melanoma. What a shock! Talk abut "leaving it too long". I had gone a year and a half with no treatment (apart from the removal of that first tumor). I was freaked out. But eventually I got tired of that. As others have pointed out, I realized that I wasn't going to die tomorrow. I took some time to evaluate different doctors and different approaches that they offered. I then decided on a sequence of treatments that I would try (always open to amending it as new studies come out and depending on my own progress). But having a plan I felt comfortable with and implementing it took much of the stress away. You will find your new normal. Just give yourself a break and some time. It truly does get easier.
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- September 30, 2015 at 7:02 pm
Thanks, Maggie. I needed to hear that it does get easier. There is just so much fear. It almost feels like most days I can't catch my breath. I am scared about this neck dissection and then the pending staging from the oncologist on Oct.15th. Things have just been moving at an incredible pace from the outset of the finding out the mole was MM. Then the two surgeries and now this one — although, I did get a second opinion from another surgical oncologist at Univ of Penn in the interim — who confirmed this is the best route to try and offset recurrence down the road. (I live right outside of Phila.) Now, Monday's surgery can't get here soon enough. I am trying to view it as not an awful, painful, and scary thing but as the true thing that it is…something that is helping me.
I am very glad to hear you are well today and that you are happy having found your new "normal." I, too, and very tired of living in fear!! I just can't stand it anymore! As I wrote previously, I have been living in fear my whole life. Time to move on! It just seems impossible right now — until I read the responses that you and some of the others wrote.
I would certainly like to keep in touch, if that's ok. I don't really have anyone to talk, specifically, about the melanoma diagnosis/cancer. I do have people I have been speaking with that have had other cancers but it's nice to speak and connect with folks who know exactly what I'm dealing with.
I wish you much (and continued) health, happiness, and wholeness.
Peace,
Michele -
- September 30, 2015 at 7:02 pm
Thanks, Maggie. I needed to hear that it does get easier. There is just so much fear. It almost feels like most days I can't catch my breath. I am scared about this neck dissection and then the pending staging from the oncologist on Oct.15th. Things have just been moving at an incredible pace from the outset of the finding out the mole was MM. Then the two surgeries and now this one — although, I did get a second opinion from another surgical oncologist at Univ of Penn in the interim — who confirmed this is the best route to try and offset recurrence down the road. (I live right outside of Phila.) Now, Monday's surgery can't get here soon enough. I am trying to view it as not an awful, painful, and scary thing but as the true thing that it is…something that is helping me.
I am very glad to hear you are well today and that you are happy having found your new "normal." I, too, and very tired of living in fear!! I just can't stand it anymore! As I wrote previously, I have been living in fear my whole life. Time to move on! It just seems impossible right now — until I read the responses that you and some of the others wrote.
I would certainly like to keep in touch, if that's ok. I don't really have anyone to talk, specifically, about the melanoma diagnosis/cancer. I do have people I have been speaking with that have had other cancers but it's nice to speak and connect with folks who know exactly what I'm dealing with.
I wish you much (and continued) health, happiness, and wholeness.
Peace,
Michele -
- September 30, 2015 at 7:32 pm
Michele – one thing that has been very helpful was to develop a "peer" relationship with somebody that I met at the cancer center in a similar set of circumstances (he happened to be starting his interferon on the exact same day so we saw each other almost every day for a month…and actually started to become waiting room and IV chair buddies with him and our wives).
Since then he and I speak once or twice a month and compare notes on our progress, the doctors, the drugs, the side effects, and also how to survive this transition.
I got lucky on meeting this person but I am betting if you talk to the nurses/social case workers…they can probably help get you introduced to somebody that is going through the same experiences in your area (and walk around all of the privacy issues as required).
It won't change your physical realities but it will allow you to cope better…and is a good way forward.
You are not alone. All the best.
Michel
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- September 30, 2015 at 8:09 pm
Hi Michel,
Thank you for reaching out to me as well. I guess I can ask about that at the hospital.Having someone to talk to who is going through the same thing or has gone through the same thing would be, and is, so helpful. Feeling like my MM diagnosis is a death sentence has been so scary and again getting caught up in the "what ifs" is NOT helpful! I am working with doctors at Penn and they have been wonderful. My therapist has been great, too, but she can't fully understand getting a melanoma diagnosis — or cancer one, for that matter. I will ask my surgeon for direction on Monday.
Best to you and all those struggling with this disease.
Peace,
Michele -
- September 30, 2015 at 8:09 pm
Hi Michel,
Thank you for reaching out to me as well. I guess I can ask about that at the hospital.Having someone to talk to who is going through the same thing or has gone through the same thing would be, and is, so helpful. Feeling like my MM diagnosis is a death sentence has been so scary and again getting caught up in the "what ifs" is NOT helpful! I am working with doctors at Penn and they have been wonderful. My therapist has been great, too, but she can't fully understand getting a melanoma diagnosis — or cancer one, for that matter. I will ask my surgeon for direction on Monday.
Best to you and all those struggling with this disease.
Peace,
Michele -
- September 30, 2015 at 8:09 pm
Hi Michel,
Thank you for reaching out to me as well. I guess I can ask about that at the hospital.Having someone to talk to who is going through the same thing or has gone through the same thing would be, and is, so helpful. Feeling like my MM diagnosis is a death sentence has been so scary and again getting caught up in the "what ifs" is NOT helpful! I am working with doctors at Penn and they have been wonderful. My therapist has been great, too, but she can't fully understand getting a melanoma diagnosis — or cancer one, for that matter. I will ask my surgeon for direction on Monday.
Best to you and all those struggling with this disease.
Peace,
Michele -
- September 30, 2015 at 7:32 pm
Michele – one thing that has been very helpful was to develop a "peer" relationship with somebody that I met at the cancer center in a similar set of circumstances (he happened to be starting his interferon on the exact same day so we saw each other almost every day for a month…and actually started to become waiting room and IV chair buddies with him and our wives).
Since then he and I speak once or twice a month and compare notes on our progress, the doctors, the drugs, the side effects, and also how to survive this transition.
I got lucky on meeting this person but I am betting if you talk to the nurses/social case workers…they can probably help get you introduced to somebody that is going through the same experiences in your area (and walk around all of the privacy issues as required).
It won't change your physical realities but it will allow you to cope better…and is a good way forward.
You are not alone. All the best.
Michel
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- September 30, 2015 at 7:32 pm
Michele – one thing that has been very helpful was to develop a "peer" relationship with somebody that I met at the cancer center in a similar set of circumstances (he happened to be starting his interferon on the exact same day so we saw each other almost every day for a month…and actually started to become waiting room and IV chair buddies with him and our wives).
Since then he and I speak once or twice a month and compare notes on our progress, the doctors, the drugs, the side effects, and also how to survive this transition.
I got lucky on meeting this person but I am betting if you talk to the nurses/social case workers…they can probably help get you introduced to somebody that is going through the same experiences in your area (and walk around all of the privacy issues as required).
It won't change your physical realities but it will allow you to cope better…and is a good way forward.
You are not alone. All the best.
Michel
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- October 2, 2015 at 2:09 am
Hi Michele,
Just to clarify, I said I am feeling healthy and happy. That is not to say that I am cancer free. There are many folks active on this site that are NED (No Evidence of Disease) years after their Stage IV diagnosis. I cannot claim to be NED. However, I stand by the statement that I am feeling healthy and happy!
I would be happy to be in touch with you. You can contact me by clicking on my username (DZnDef) and then the tab titled "contact".
I had a lot of fear and stress and grief in my life leading up to my diagnosis. I don't have any of that now. After a while, my diagnosis oddly made me more "zen". Sort of put things into perspective for me. Like that expression: Don't sweat the small stuff ……. and, it's all small stuff. Plus I've learned to wallow in the "permission slip" that is cancer. I have permission to say "no" to things I don't want to do with absolutely no guilt! I can act in wild and irreverant ways and no one can say "boo" to me about it. I am free to live my life exactly as I want to live it with no guilt and it's marvelous. I wish I had lived this way my whole life! And really who knows what's in store for us? We could defeat cancer and on our way to celebrate be hit by a bus. So don't put off the celebrations. Take the steps you feel are the right ones to regain your health and let them take care of you. Enjoy your weekend. You have the easy part on Monday. All you have to do is sleep.
Cheers!
Maggie
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- October 2, 2015 at 2:09 am
Hi Michele,
Just to clarify, I said I am feeling healthy and happy. That is not to say that I am cancer free. There are many folks active on this site that are NED (No Evidence of Disease) years after their Stage IV diagnosis. I cannot claim to be NED. However, I stand by the statement that I am feeling healthy and happy!
I would be happy to be in touch with you. You can contact me by clicking on my username (DZnDef) and then the tab titled "contact".
I had a lot of fear and stress and grief in my life leading up to my diagnosis. I don't have any of that now. After a while, my diagnosis oddly made me more "zen". Sort of put things into perspective for me. Like that expression: Don't sweat the small stuff ……. and, it's all small stuff. Plus I've learned to wallow in the "permission slip" that is cancer. I have permission to say "no" to things I don't want to do with absolutely no guilt! I can act in wild and irreverant ways and no one can say "boo" to me about it. I am free to live my life exactly as I want to live it with no guilt and it's marvelous. I wish I had lived this way my whole life! And really who knows what's in store for us? We could defeat cancer and on our way to celebrate be hit by a bus. So don't put off the celebrations. Take the steps you feel are the right ones to regain your health and let them take care of you. Enjoy your weekend. You have the easy part on Monday. All you have to do is sleep.
Cheers!
Maggie
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- October 2, 2015 at 2:09 am
Hi Michele,
Just to clarify, I said I am feeling healthy and happy. That is not to say that I am cancer free. There are many folks active on this site that are NED (No Evidence of Disease) years after their Stage IV diagnosis. I cannot claim to be NED. However, I stand by the statement that I am feeling healthy and happy!
I would be happy to be in touch with you. You can contact me by clicking on my username (DZnDef) and then the tab titled "contact".
I had a lot of fear and stress and grief in my life leading up to my diagnosis. I don't have any of that now. After a while, my diagnosis oddly made me more "zen". Sort of put things into perspective for me. Like that expression: Don't sweat the small stuff ……. and, it's all small stuff. Plus I've learned to wallow in the "permission slip" that is cancer. I have permission to say "no" to things I don't want to do with absolutely no guilt! I can act in wild and irreverant ways and no one can say "boo" to me about it. I am free to live my life exactly as I want to live it with no guilt and it's marvelous. I wish I had lived this way my whole life! And really who knows what's in store for us? We could defeat cancer and on our way to celebrate be hit by a bus. So don't put off the celebrations. Take the steps you feel are the right ones to regain your health and let them take care of you. Enjoy your weekend. You have the easy part on Monday. All you have to do is sleep.
Cheers!
Maggie
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- September 30, 2015 at 7:02 pm
Thanks, Maggie. I needed to hear that it does get easier. There is just so much fear. It almost feels like most days I can't catch my breath. I am scared about this neck dissection and then the pending staging from the oncologist on Oct.15th. Things have just been moving at an incredible pace from the outset of the finding out the mole was MM. Then the two surgeries and now this one — although, I did get a second opinion from another surgical oncologist at Univ of Penn in the interim — who confirmed this is the best route to try and offset recurrence down the road. (I live right outside of Phila.) Now, Monday's surgery can't get here soon enough. I am trying to view it as not an awful, painful, and scary thing but as the true thing that it is…something that is helping me.
I am very glad to hear you are well today and that you are happy having found your new "normal." I, too, and very tired of living in fear!! I just can't stand it anymore! As I wrote previously, I have been living in fear my whole life. Time to move on! It just seems impossible right now — until I read the responses that you and some of the others wrote.
I would certainly like to keep in touch, if that's ok. I don't really have anyone to talk, specifically, about the melanoma diagnosis/cancer. I do have people I have been speaking with that have had other cancers but it's nice to speak and connect with folks who know exactly what I'm dealing with.
I wish you much (and continued) health, happiness, and wholeness.
Peace,
Michele
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- September 30, 2015 at 6:13 pm
Hi Michele, so sorry that you have a reason to find yourself here. But glad that you found this group as it is a very supportive and informative one. Reading your post took me back to my own diagnosis. Sitting here feeling healthy and happy it is difficult for me to remember that I ever felt as fearful as you currently do. But yes, I definitely did. A spot was found on my lung in July 2012 but was misdiagnosed. It wasn't until a recurrence in January 2014 that I was properly diagnosed and the tumor from 2012 was reassessed as also being melanoma. What a shock! Talk abut "leaving it too long". I had gone a year and a half with no treatment (apart from the removal of that first tumor). I was freaked out. But eventually I got tired of that. As others have pointed out, I realized that I wasn't going to die tomorrow. I took some time to evaluate different doctors and different approaches that they offered. I then decided on a sequence of treatments that I would try (always open to amending it as new studies come out and depending on my own progress). But having a plan I felt comfortable with and implementing it took much of the stress away. You will find your new normal. Just give yourself a break and some time. It truly does get easier.
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- September 30, 2015 at 7:05 pm
Thank you, everyone, for your responses! They are appreciated and very much providing hope that life will get back to some kind of new "normal."
I wish you ALL much (and continued) happiness, health, and wholeness. I will certainly update after my surgery and staging. Please keep me in your thoughts — and I will do the same.
Peace,
Michele -
- September 30, 2015 at 7:05 pm
Thank you, everyone, for your responses! They are appreciated and very much providing hope that life will get back to some kind of new "normal."
I wish you ALL much (and continued) happiness, health, and wholeness. I will certainly update after my surgery and staging. Please keep me in your thoughts — and I will do the same.
Peace,
Michele -
- September 30, 2015 at 7:05 pm
Thank you, everyone, for your responses! They are appreciated and very much providing hope that life will get back to some kind of new "normal."
I wish you ALL much (and continued) happiness, health, and wholeness. I will certainly update after my surgery and staging. Please keep me in your thoughts — and I will do the same.
Peace,
Michele -
- October 1, 2015 at 3:17 am
Hi Michele,
I've been in that abyss where you are just under 5 years ago. Had one helluva pity party that year. I was diagnosed in December 2010. Christmas really sucked that year, so did my birthday, and New Year's.
You are doing one major thing right: you got help to deal with the stress you're under! Celexa and I were very good friends for several weeks after I was diagnosed but eventually I weaned myself off of it.
Something positive I'd like to point out to you is that your scan showed no distant metasteses. This is important to remember.
It's very possible that the one node is reactive. After all, you just had surgery. So, the odds are are very good that's exactly what it is.
You can't undo the past. You have to move forward. And you will, one step at a time. One of the best things a good friend reminded me of was that my diagnosis represented a change and new routine in my life. Sudden change along with a new routine is scary because you've had the rug pulled out from under you. Once you get the new routine down pat, you'll find that you'll be just fine with it. Your new routine will consist of regular doctor visits and followup scans that will decrease in frequency as time moves on. Scan time will bring some stress. But you are in good company and this board is great to get that little emotional boost to help you through scan day.
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- October 1, 2015 at 3:17 am
Hi Michele,
I've been in that abyss where you are just under 5 years ago. Had one helluva pity party that year. I was diagnosed in December 2010. Christmas really sucked that year, so did my birthday, and New Year's.
You are doing one major thing right: you got help to deal with the stress you're under! Celexa and I were very good friends for several weeks after I was diagnosed but eventually I weaned myself off of it.
Something positive I'd like to point out to you is that your scan showed no distant metasteses. This is important to remember.
It's very possible that the one node is reactive. After all, you just had surgery. So, the odds are are very good that's exactly what it is.
You can't undo the past. You have to move forward. And you will, one step at a time. One of the best things a good friend reminded me of was that my diagnosis represented a change and new routine in my life. Sudden change along with a new routine is scary because you've had the rug pulled out from under you. Once you get the new routine down pat, you'll find that you'll be just fine with it. Your new routine will consist of regular doctor visits and followup scans that will decrease in frequency as time moves on. Scan time will bring some stress. But you are in good company and this board is great to get that little emotional boost to help you through scan day.
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- October 1, 2015 at 12:28 pm
Hi Michele!
I reacted the same way you did…the fear of the unknown and all the waiting are just miserable. I pray A LOT but like you, I'm a worrier by nature. However, I've been Stage IV since 2013 and I'm still here! :)))) After a year of Keytruda, I was taken off the infusions because my PET/CT scans showed no active cancer. There's so much hope for Melanoma patients now. Granted, no one wants a cancer diagnosis but it happens and really….who knows why. I feel it's God's plan for me and am starting to try to reach out to other people who want to talk about their struggles. All my doctors have told me, "Don't overdo the internet searches!!!!!" Stick to MRF where you will read accurate and up to date information. But I could spend hours reading about Melanamo so I have to shut down my computer and do something else. I'm retired so I have more time to do what I want to so I find listening to music, exercising, friends, baking, volunteering…stuff I enjoy, can distract me. At first it really was hard to be distracted but you will adjust. Also, when you have your surgery, ask about Palliative Care. It's often associated with end times, but it's really for everyone!!!! They've helped me a lot with such simple techniques. I was a patient in NIH for a month and Palliative Care came in every day. One simple thing they did for me was to make a Stop Sign and hang it on the wall in may room right across from my bed. Everytime I started with my ANTS (Automatic Negative Thoughts), I would look at the Stop sign, try very hard to stomp those thoughts out of my head and think of a blessing in my life, one of my children saying something funny, pray, get out of my bed and go bug the nurses, etc.! It was very effective! They also gave me relaxation techniques to help me sleep, soothing music, arranged for a massage, and so on. If you need medication, that's fine as long as your under a doctor's care. Stress is not good for your immune system. So many of us know exactly how you feel. There are many almost miraculous treatments and findings in understanding melanoma that didn't exist before. I went to a melanoma symposium at Lombardi Cancer Center in Georgetown and there are so many brilliant scientists out there dedicated to a cure. My doctor is Michael Atkins and he's wonderful (Lombardi CC). So if you would like to email me, my address is [email protected]. You can find my profile on here too…tschmith (Terrie Schmith).
Smile even if you don't feel like it….it helps!
Terrie
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- October 1, 2015 at 12:28 pm
Hi Michele!
I reacted the same way you did…the fear of the unknown and all the waiting are just miserable. I pray A LOT but like you, I'm a worrier by nature. However, I've been Stage IV since 2013 and I'm still here! :)))) After a year of Keytruda, I was taken off the infusions because my PET/CT scans showed no active cancer. There's so much hope for Melanoma patients now. Granted, no one wants a cancer diagnosis but it happens and really….who knows why. I feel it's God's plan for me and am starting to try to reach out to other people who want to talk about their struggles. All my doctors have told me, "Don't overdo the internet searches!!!!!" Stick to MRF where you will read accurate and up to date information. But I could spend hours reading about Melanamo so I have to shut down my computer and do something else. I'm retired so I have more time to do what I want to so I find listening to music, exercising, friends, baking, volunteering…stuff I enjoy, can distract me. At first it really was hard to be distracted but you will adjust. Also, when you have your surgery, ask about Palliative Care. It's often associated with end times, but it's really for everyone!!!! They've helped me a lot with such simple techniques. I was a patient in NIH for a month and Palliative Care came in every day. One simple thing they did for me was to make a Stop Sign and hang it on the wall in may room right across from my bed. Everytime I started with my ANTS (Automatic Negative Thoughts), I would look at the Stop sign, try very hard to stomp those thoughts out of my head and think of a blessing in my life, one of my children saying something funny, pray, get out of my bed and go bug the nurses, etc.! It was very effective! They also gave me relaxation techniques to help me sleep, soothing music, arranged for a massage, and so on. If you need medication, that's fine as long as your under a doctor's care. Stress is not good for your immune system. So many of us know exactly how you feel. There are many almost miraculous treatments and findings in understanding melanoma that didn't exist before. I went to a melanoma symposium at Lombardi Cancer Center in Georgetown and there are so many brilliant scientists out there dedicated to a cure. My doctor is Michael Atkins and he's wonderful (Lombardi CC). So if you would like to email me, my address is [email protected]. You can find my profile on here too…tschmith (Terrie Schmith).
Smile even if you don't feel like it….it helps!
Terrie
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- October 1, 2015 at 12:28 pm
Hi Michele!
I reacted the same way you did…the fear of the unknown and all the waiting are just miserable. I pray A LOT but like you, I'm a worrier by nature. However, I've been Stage IV since 2013 and I'm still here! :)))) After a year of Keytruda, I was taken off the infusions because my PET/CT scans showed no active cancer. There's so much hope for Melanoma patients now. Granted, no one wants a cancer diagnosis but it happens and really….who knows why. I feel it's God's plan for me and am starting to try to reach out to other people who want to talk about their struggles. All my doctors have told me, "Don't overdo the internet searches!!!!!" Stick to MRF where you will read accurate and up to date information. But I could spend hours reading about Melanamo so I have to shut down my computer and do something else. I'm retired so I have more time to do what I want to so I find listening to music, exercising, friends, baking, volunteering…stuff I enjoy, can distract me. At first it really was hard to be distracted but you will adjust. Also, when you have your surgery, ask about Palliative Care. It's often associated with end times, but it's really for everyone!!!! They've helped me a lot with such simple techniques. I was a patient in NIH for a month and Palliative Care came in every day. One simple thing they did for me was to make a Stop Sign and hang it on the wall in may room right across from my bed. Everytime I started with my ANTS (Automatic Negative Thoughts), I would look at the Stop sign, try very hard to stomp those thoughts out of my head and think of a blessing in my life, one of my children saying something funny, pray, get out of my bed and go bug the nurses, etc.! It was very effective! They also gave me relaxation techniques to help me sleep, soothing music, arranged for a massage, and so on. If you need medication, that's fine as long as your under a doctor's care. Stress is not good for your immune system. So many of us know exactly how you feel. There are many almost miraculous treatments and findings in understanding melanoma that didn't exist before. I went to a melanoma symposium at Lombardi Cancer Center in Georgetown and there are so many brilliant scientists out there dedicated to a cure. My doctor is Michael Atkins and he's wonderful (Lombardi CC). So if you would like to email me, my address is [email protected]. You can find my profile on here too…tschmith (Terrie Schmith).
Smile even if you don't feel like it….it helps!
Terrie
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- October 1, 2015 at 3:17 am
Hi Michele,
I've been in that abyss where you are just under 5 years ago. Had one helluva pity party that year. I was diagnosed in December 2010. Christmas really sucked that year, so did my birthday, and New Year's.
You are doing one major thing right: you got help to deal with the stress you're under! Celexa and I were very good friends for several weeks after I was diagnosed but eventually I weaned myself off of it.
Something positive I'd like to point out to you is that your scan showed no distant metasteses. This is important to remember.
It's very possible that the one node is reactive. After all, you just had surgery. So, the odds are are very good that's exactly what it is.
You can't undo the past. You have to move forward. And you will, one step at a time. One of the best things a good friend reminded me of was that my diagnosis represented a change and new routine in my life. Sudden change along with a new routine is scary because you've had the rug pulled out from under you. Once you get the new routine down pat, you'll find that you'll be just fine with it. Your new routine will consist of regular doctor visits and followup scans that will decrease in frequency as time moves on. Scan time will bring some stress. But you are in good company and this board is great to get that little emotional boost to help you through scan day.
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- October 1, 2015 at 11:53 pm
Welcome to a new family. This will be a place you find yourself in the middle of sleepless nights and hard days. 9/12/14 my 17 yr old son was diagnosed stage 3c. Through neck dissection, biochemo, interferon and radiation it grew. Stage 4. He took a small break to gain some weight, and be a kid and graduate high school. In that 6 weeks it spread everywhere. Spine, liver, lungs, ribs, sternum, femurs…we could see rumors on his skin. Everywhere. We went to Hawaii with Make-a-wish. Then he was able to receive Keytruda! I really wasn't sure he could survive until it kicked in…he is doing GREAT!! Half the cancer was gone or shrunk or less active in his 3 mo scan! He is nearby at college. He plays tennis everyday. And you know what??? Jake is so brave. I was in such a dark place those first few weeks! It's truly paralyzing! My neighbors showered us in healthy food, prayers, books and checks! His friends treated him normal which he loved! And Jake…well jake never talks cancer! Jake loves life! Jake is happy. He is active everyday he can!! He says he is not afraid to go if that is what God wants. He also wants to live the best he can if he gets to stay! So I fight for him all the time. I look for all we have to be grateful for. I look for what I need to learn. And I watch an 18 year old kid teach me how to have courage! You can do this!! We all understand. We love you.
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- October 1, 2015 at 11:53 pm
Welcome to a new family. This will be a place you find yourself in the middle of sleepless nights and hard days. 9/12/14 my 17 yr old son was diagnosed stage 3c. Through neck dissection, biochemo, interferon and radiation it grew. Stage 4. He took a small break to gain some weight, and be a kid and graduate high school. In that 6 weeks it spread everywhere. Spine, liver, lungs, ribs, sternum, femurs…we could see rumors on his skin. Everywhere. We went to Hawaii with Make-a-wish. Then he was able to receive Keytruda! I really wasn't sure he could survive until it kicked in…he is doing GREAT!! Half the cancer was gone or shrunk or less active in his 3 mo scan! He is nearby at college. He plays tennis everyday. And you know what??? Jake is so brave. I was in such a dark place those first few weeks! It's truly paralyzing! My neighbors showered us in healthy food, prayers, books and checks! His friends treated him normal which he loved! And Jake…well jake never talks cancer! Jake loves life! Jake is happy. He is active everyday he can!! He says he is not afraid to go if that is what God wants. He also wants to live the best he can if he gets to stay! So I fight for him all the time. I look for all we have to be grateful for. I look for what I need to learn. And I watch an 18 year old kid teach me how to have courage! You can do this!! We all understand. We love you.
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- October 1, 2015 at 11:53 pm
Welcome to a new family. This will be a place you find yourself in the middle of sleepless nights and hard days. 9/12/14 my 17 yr old son was diagnosed stage 3c. Through neck dissection, biochemo, interferon and radiation it grew. Stage 4. He took a small break to gain some weight, and be a kid and graduate high school. In that 6 weeks it spread everywhere. Spine, liver, lungs, ribs, sternum, femurs…we could see rumors on his skin. Everywhere. We went to Hawaii with Make-a-wish. Then he was able to receive Keytruda! I really wasn't sure he could survive until it kicked in…he is doing GREAT!! Half the cancer was gone or shrunk or less active in his 3 mo scan! He is nearby at college. He plays tennis everyday. And you know what??? Jake is so brave. I was in such a dark place those first few weeks! It's truly paralyzing! My neighbors showered us in healthy food, prayers, books and checks! His friends treated him normal which he loved! And Jake…well jake never talks cancer! Jake loves life! Jake is happy. He is active everyday he can!! He says he is not afraid to go if that is what God wants. He also wants to live the best he can if he gets to stay! So I fight for him all the time. I look for all we have to be grateful for. I look for what I need to learn. And I watch an 18 year old kid teach me how to have courage! You can do this!! We all understand. We love you.
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Tagged: cutaneous melanoma
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