What should be happy times!!??
We are so lucky that the surgery had no effect on him thus far. He is back at work and healthier than ever now that the headaches are gone as well. His tumor was not completely removed due to location. He has not received any type of treatment after surgery either. They are taking a wait and see approach with his grade 2 brain tumor, well.. what is remaining.
So here I am, newly engaged, things are looking up health wise for him… and I have a fear of getting married, because his future is so unclear. I have of fear of having what it takes should the day come that he is very sick. It’s so easy to forget when he is well. His attitude is un like anything you have ever seen. You would never know!!! He is happy, he is great, he is well and determined this will not bring him down. I think the cancer is effecting me more! How silly is that!?
How do you keep moving forward when things are so unclear? Most couples look forward and see a life together forever… I can’t do that. I’m feeling a bit robbed.
Comments
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Future unclear
You have such difficult choices at such a young age!
What you're feeling is normal and human and you're not alone.
The future is unclear for all of us - cancer or not.
A "life together" for 2 years or 50 years is a life together.
I have read a few posts on this site where a survivor's spouse or
significant other has left them after/during diagnosis/treatment.
I can tell you there are far more posts from those who have stuck
with their partners.
Have you discussed these feelings with him? I'm sure the future seems
unclear to him as well. As for being able to handle things should he
become ill, well most of us survivors and caregivers will tell we didn't know
we had the strength to bear what we have so far.
It would help us all if you'd update your profile with more details
about his cancer (age, type of cancer, etc.).
I'm so sorry you're having to go through this. I'm sure others will
post soon. Please know you are welcome here anytime. You've been on the
site for awhile so you know how valuable it can be.
I'm sorry I couldn't give you any concrete "answers" but wanted you to know
we are listening. I wish you both the best.
Hugs and positive thoughts,
Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.
Members are sharing recipes!:
Recipe Sharing Project0 -
Thank you for your replyjimwins said:Future unclear
You have such difficult choices at such a young age!
What you're feeling is normal and human and you're not alone.
The future is unclear for all of us - cancer or not.
A "life together" for 2 years or 50 years is a life together.
I have read a few posts on this site where a survivor's spouse or
significant other has left them after/during diagnosis/treatment.
I can tell you there are far more posts from those who have stuck
with their partners.
Have you discussed these feelings with him? I'm sure the future seems
unclear to him as well. As for being able to handle things should he
become ill, well most of us survivors and caregivers will tell we didn't know
we had the strength to bear what we have so far.
It would help us all if you'd update your profile with more details
about his cancer (age, type of cancer, etc.).
I'm so sorry you're having to go through this. I'm sure others will
post soon. Please know you are welcome here anytime. You've been on the
site for awhile so you know how valuable it can be.
I'm sorry I couldn't give you any concrete "answers" but wanted you to know
we are listening. I wish you both the best.
Hugs and positive thoughts,
Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.
Members are sharing recipes!:
Recipe Sharing Project
Thank you for your reply Jim.
Jordan was diagnosed with grade 2 oligodendroglioma last summer after going into emergency with a specific location headache that brought him to tears. We consider ourselves very lucky that they didn’t just give him migraine medication and send him on his way. . . others stories usually involve some type of seizure before getting to the point of diagnosis. Although he is at risk for seizures, he has never had one.
His tumor is located on the left parietal Lobe, extending through the middle of the brain (the connection highway as the doctors have explained to us) and going into the right parietal lobe. The largest of the mass on the left side was removed, but due to location and the damage it would cause, what’s left is inoperable. After genetic testing we found out he does not have the gene deletions we had hoped for and when the day comes that he requires treatment, radiation is going to be the way we go. They have explained to us the damage radiation can cause when used in the location of the brain his tumor remains in. Not good.
Jordan just turned 30. He is back at work and feeling better than ever. No more headaches, pushing forward and living life to the fullest. He is the most amazing person I have met in my entire life! How lucky am I to have met such a man! He has always been a hard worker, strong willed, healthy and positive. The thought of him becoming ill after all of this makes me feel sick to my stomach. To ever have to see him that way would destroy me only because I know it would destroy him.
We have been told it could be 6 months, 2 years or 10 years before we need to talk about treatment. We need to wait and see what the tumor does, and when they become concerned, they will let us know and we talk about radiation from there. They have asked him if he would like it now, but advised that it is better to wait.
I look at wedding books and think of the special day, and wonder if I plan to far ahead he could be sick? I wonder if we will ever get to the point of buying a house together, should I have a child? … my mind runs and runs day and night. Then I have days where I look at him and fall completely in love with him every second… every minute. What a brave, courageous, strong and amazing man he is… look how he pulls through, look how he refuses to let this get him down, and I wonder what the heck is wrong with me. How could I be having this pity party when he is the one with cancer and doing just fine.
Every special occasion is hard. The amount of gifts on his birthday from his family, and the look on everyone’s face was a constant reminder throughout the day. Christmas was the same. . . . nothing really is as it was anymore.
Ashley0 -
You can do all of it.AshleyWF said:Thank you for your reply
Thank you for your reply Jim.
Jordan was diagnosed with grade 2 oligodendroglioma last summer after going into emergency with a specific location headache that brought him to tears. We consider ourselves very lucky that they didn’t just give him migraine medication and send him on his way. . . others stories usually involve some type of seizure before getting to the point of diagnosis. Although he is at risk for seizures, he has never had one.
His tumor is located on the left parietal Lobe, extending through the middle of the brain (the connection highway as the doctors have explained to us) and going into the right parietal lobe. The largest of the mass on the left side was removed, but due to location and the damage it would cause, what’s left is inoperable. After genetic testing we found out he does not have the gene deletions we had hoped for and when the day comes that he requires treatment, radiation is going to be the way we go. They have explained to us the damage radiation can cause when used in the location of the brain his tumor remains in. Not good.
Jordan just turned 30. He is back at work and feeling better than ever. No more headaches, pushing forward and living life to the fullest. He is the most amazing person I have met in my entire life! How lucky am I to have met such a man! He has always been a hard worker, strong willed, healthy and positive. The thought of him becoming ill after all of this makes me feel sick to my stomach. To ever have to see him that way would destroy me only because I know it would destroy him.
We have been told it could be 6 months, 2 years or 10 years before we need to talk about treatment. We need to wait and see what the tumor does, and when they become concerned, they will let us know and we talk about radiation from there. They have asked him if he would like it now, but advised that it is better to wait.
I look at wedding books and think of the special day, and wonder if I plan to far ahead he could be sick? I wonder if we will ever get to the point of buying a house together, should I have a child? … my mind runs and runs day and night. Then I have days where I look at him and fall completely in love with him every second… every minute. What a brave, courageous, strong and amazing man he is… look how he pulls through, look how he refuses to let this get him down, and I wonder what the heck is wrong with me. How could I be having this pity party when he is the one with cancer and doing just fine.
Every special occasion is hard. The amount of gifts on his birthday from his family, and the look on everyone’s face was a constant reminder throughout the day. Christmas was the same. . . . nothing really is as it was anymore.
Ashley
You sound like an amazing women and Jim is write a life togeather two years or fifty years is a life togeather. You sound like you love him so much try not to be afriade take it from a cancer paitent you will do him so much better if you just plan. If my mom put her life on hold and acted like she was afraid to leave the house because maybe while she is gone I could die I think that would bring me down. I don't want to live my life like it is over and I don't want her to either. My mom birthday is coming up and I told my dad he should take her for a few days and get her away from my cancer. It has not been a year yet since the doctor sat there and told my mom (I was in ICU recovering from surgery)that I had stage four ovarian cancer. Her life has been taking care of me I told her what I had told my dad she needs this break she needs to see that life goes on and if you do that for him it could be a blessing for him. If you love him as much as it seems you can walk through this with him no matter what the end will bring. I will be praying for both you and him and pray that you find the peace that passes all understanding and know you can be there for him.
Love, Hugs, and Prayers
Anne0 -
lifeAshleyWF said:Thank you for your reply
Thank you for your reply Jim.
Jordan was diagnosed with grade 2 oligodendroglioma last summer after going into emergency with a specific location headache that brought him to tears. We consider ourselves very lucky that they didn’t just give him migraine medication and send him on his way. . . others stories usually involve some type of seizure before getting to the point of diagnosis. Although he is at risk for seizures, he has never had one.
His tumor is located on the left parietal Lobe, extending through the middle of the brain (the connection highway as the doctors have explained to us) and going into the right parietal lobe. The largest of the mass on the left side was removed, but due to location and the damage it would cause, what’s left is inoperable. After genetic testing we found out he does not have the gene deletions we had hoped for and when the day comes that he requires treatment, radiation is going to be the way we go. They have explained to us the damage radiation can cause when used in the location of the brain his tumor remains in. Not good.
Jordan just turned 30. He is back at work and feeling better than ever. No more headaches, pushing forward and living life to the fullest. He is the most amazing person I have met in my entire life! How lucky am I to have met such a man! He has always been a hard worker, strong willed, healthy and positive. The thought of him becoming ill after all of this makes me feel sick to my stomach. To ever have to see him that way would destroy me only because I know it would destroy him.
We have been told it could be 6 months, 2 years or 10 years before we need to talk about treatment. We need to wait and see what the tumor does, and when they become concerned, they will let us know and we talk about radiation from there. They have asked him if he would like it now, but advised that it is better to wait.
I look at wedding books and think of the special day, and wonder if I plan to far ahead he could be sick? I wonder if we will ever get to the point of buying a house together, should I have a child? … my mind runs and runs day and night. Then I have days where I look at him and fall completely in love with him every second… every minute. What a brave, courageous, strong and amazing man he is… look how he pulls through, look how he refuses to let this get him down, and I wonder what the heck is wrong with me. How could I be having this pity party when he is the one with cancer and doing just fine.
Every special occasion is hard. The amount of gifts on his birthday from his family, and the look on everyone’s face was a constant reminder throughout the day. Christmas was the same. . . . nothing really is as it was anymore.
Ashley
One day of life is a gift, Ashley.
But you can't live your life holding your breath.
Within every young person who gets married is the potential that the day after their wedding something will go horribly wrong and one of them will be left alone. Statistically, that is a very small percentage but it does happen.
You and your fiance are armed with knowledge many people don't have. You know what you MAY have to fight again. You don't know that you WILL have to fight it but at least you have the advantage of forewarning over this enemy.
Ashley, I will say to you what I tell my daughters when they are seeking counsel for a difficult situation - and that is what you have here, a difficult situation. It is by no means an impossible one: what would you tell a friend who came to you for advise about this situation?
You aren't going to fall out of love with him just because you make yourself stop dreaming of a future together: you are just going to miss out on some of the sweetness.
There are people who die never having realized the deliciousness of life: you learned early.
Now, go use that knowledge to have a wonderful life. Love, laugh, fight, grow, plan, re-plan, stretch, break up, make up, play, work, experience the joys and the sadness that comes with being human - goodness, Honey, go do it all!0 -
There's always the busAshleyWF said:Thank you for your reply
Thank you for your reply Jim.
Jordan was diagnosed with grade 2 oligodendroglioma last summer after going into emergency with a specific location headache that brought him to tears. We consider ourselves very lucky that they didn’t just give him migraine medication and send him on his way. . . others stories usually involve some type of seizure before getting to the point of diagnosis. Although he is at risk for seizures, he has never had one.
His tumor is located on the left parietal Lobe, extending through the middle of the brain (the connection highway as the doctors have explained to us) and going into the right parietal lobe. The largest of the mass on the left side was removed, but due to location and the damage it would cause, what’s left is inoperable. After genetic testing we found out he does not have the gene deletions we had hoped for and when the day comes that he requires treatment, radiation is going to be the way we go. They have explained to us the damage radiation can cause when used in the location of the brain his tumor remains in. Not good.
Jordan just turned 30. He is back at work and feeling better than ever. No more headaches, pushing forward and living life to the fullest. He is the most amazing person I have met in my entire life! How lucky am I to have met such a man! He has always been a hard worker, strong willed, healthy and positive. The thought of him becoming ill after all of this makes me feel sick to my stomach. To ever have to see him that way would destroy me only because I know it would destroy him.
We have been told it could be 6 months, 2 years or 10 years before we need to talk about treatment. We need to wait and see what the tumor does, and when they become concerned, they will let us know and we talk about radiation from there. They have asked him if he would like it now, but advised that it is better to wait.
I look at wedding books and think of the special day, and wonder if I plan to far ahead he could be sick? I wonder if we will ever get to the point of buying a house together, should I have a child? … my mind runs and runs day and night. Then I have days where I look at him and fall completely in love with him every second… every minute. What a brave, courageous, strong and amazing man he is… look how he pulls through, look how he refuses to let this get him down, and I wonder what the heck is wrong with me. How could I be having this pity party when he is the one with cancer and doing just fine.
Every special occasion is hard. The amount of gifts on his birthday from his family, and the look on everyone’s face was a constant reminder throughout the day. Christmas was the same. . . . nothing really is as it was anymore.
Ashley
That's our phrase for "anything could happen." Any one of us could get hit by a bus tomorrow. When I got married, I was the one with the history of cancer and other ill health in my family. I never got sick - my husband was the one who got cancer.
We got into the routine of not thinking about the future - we planned, but we didn't do the "if you're up to it" or "if we don't have to go to the hospital" thing. We did have to change some plans, but not much. We kept life as normal as possible during treatment.
Being a caregiver is hard, and it is good that you have doubts. Do you want to spend whatever days either one of you has left with him? Whether it's 1 year or 70 years? Whether you go first (remember that bus) or he does? If so, I'd say grab hold and don't let go. Buy the house, have the kid, make every second count. I do hope you have many years together to look back and say, "I'm sure glad we did this."0 -
Congratulations!
Congratulations on your engagement! I'm so happy for you two that your fiance is doing so well.
I'm glad you wrote this. In Jan 2011 my husband (then 33 years) was diagnosed with diffuse intrinsic pontine glioma. Pretty rare in adults, and devastatingly grim for kids. No real tumor, but as it was described to us, bad cells mixed in with the good cells in his pons. Inoperable. He completed his radiation treatment in April 2011 and continues to get MRIs every 3 months. He still gets frequent headaches, but we all believe them to be a side effect of the radiation. Otherwise, he's doing pretty well. No seizures. Just dealing with fatigue fatigue fatigue.
When he was first diagnosed, we were just beginning to start trying to have a 2nd child. (I guess I should add that it took us almost 5 years to conceive our daughter, with much medical intervention to finally have her.) Needless to say, that got put on hold. We finally resumed trying right around the one year anniversary of his diagnosis. It's hard, "planning" on a future that for us, we know is very limited. Our first daughter is now 3 years old, and I still would love for her to have a sibling. For me, that outweighs the fear of having 2 kids without a dad.
You obviously love Jordon very much. Like the others, I'm going to say just live your lives to the fullest. It sucks knowing that cancer is lurking. Just know that you are not alone. Come here whenever you need. Big hugs to you both.0 -
Congrats!LeslieLand said:Congratulations!
Congratulations on your engagement! I'm so happy for you two that your fiance is doing so well.
I'm glad you wrote this. In Jan 2011 my husband (then 33 years) was diagnosed with diffuse intrinsic pontine glioma. Pretty rare in adults, and devastatingly grim for kids. No real tumor, but as it was described to us, bad cells mixed in with the good cells in his pons. Inoperable. He completed his radiation treatment in April 2011 and continues to get MRIs every 3 months. He still gets frequent headaches, but we all believe them to be a side effect of the radiation. Otherwise, he's doing pretty well. No seizures. Just dealing with fatigue fatigue fatigue.
When he was first diagnosed, we were just beginning to start trying to have a 2nd child. (I guess I should add that it took us almost 5 years to conceive our daughter, with much medical intervention to finally have her.) Needless to say, that got put on hold. We finally resumed trying right around the one year anniversary of his diagnosis. It's hard, "planning" on a future that for us, we know is very limited. Our first daughter is now 3 years old, and I still would love for her to have a sibling. For me, that outweighs the fear of having 2 kids without a dad.
You obviously love Jordon very much. Like the others, I'm going to say just live your lives to the fullest. It sucks knowing that cancer is lurking. Just know that you are not alone. Come here whenever you need. Big hugs to you both.
I think it's great that he proposed and wants to spend the rest of his life with you. It sounds like a life worth living, don't you think? I agree with Jim, you're only promised this moment that you're in. You have no way of knowing what will happen tomorrow with anyone, yourself included.
I understand how you want everything to be - perfect. But life isn't perfect; actually, it's pretty messy. In my opinion, it's the mess that makes you appreciate everything else. My beautiful wife was diagnosed the day after her 37th birthday. Never been sick, no surgeries, and no history of disease in her family. She just got it. And if she has it, then I have it. We finished our 6 months of chemo just last night and have already scheduled her surgery. We have two boys, big house, two dogs, two cats...the normal messy life. And I wouldn't change anything about it.
Good luck to you and I hope you know that you are right in whatever you chose. Be happy and love everything that comes before you - the good and the bad. We should be celebrating; you just got engaged!!!0 -
Well saidSlowRollin said:Congrats!
I think it's great that he proposed and wants to spend the rest of his life with you. It sounds like a life worth living, don't you think? I agree with Jim, you're only promised this moment that you're in. You have no way of knowing what will happen tomorrow with anyone, yourself included.
I understand how you want everything to be - perfect. But life isn't perfect; actually, it's pretty messy. In my opinion, it's the mess that makes you appreciate everything else. My beautiful wife was diagnosed the day after her 37th birthday. Never been sick, no surgeries, and no history of disease in her family. She just got it. And if she has it, then I have it. We finished our 6 months of chemo just last night and have already scheduled her surgery. We have two boys, big house, two dogs, two cats...the normal messy life. And I wouldn't change anything about it.
Good luck to you and I hope you know that you are right in whatever you chose. Be happy and love everything that comes before you - the good and the bad. We should be celebrating; you just got engaged!!!
Well said and I could write a book on the "messiness" of life ☺.
Hugs,
Jim0 -
A Life Sentence
This isn't really about cancer for me, but I can relate. My husband had a traumatic brain injury when I met him. He had to carry a little notebook around with him to remember even the simplest things. He was on SSDI and couldn't handle more than a part time retail job. There were a lot of things that were uncertain about our future. But I fell in love with him and five years later I could not imagine a life without him. He improved strides over the years and I've been told a lot of it had to do with my love and support.
It was frustrating all to hell and back at times, but being with him made everything worth it in the end. Almost two years ago we had a son, who I can also not imagine my life without. My husband is no longer on SSDI and works for a major university. I thought I would be taking care of him for the rest of my life and here we are taking care of each other. I was prepared to take on whatever difficulty his condition would entail. I suppose you have to ask yourself if you are prepared as well.
I can only say that life in general is pretty unclear if you think about it. I mean, here I am on this board because my mother in law was just diagnosed with an extremely rare cancer that is fiercely spreading as we speak. She has less than three months to live. She moved here to be close to her grandson last year and now she is dying. All these plans we made together will never be. My son probably won't even remember her.
Tomorrow you could get in your car and die in a horrific, random accident. Live your life according to your heart. You may hurt and struggle along the way, but no good life comes without pain. Pain is what makes us appreciate the goodness in life.0
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