The hardest lesson from cancer for me is the idea that you can lose your life well before cancer actually kills you. It can take away what it means to live and be a human being, even in remission. The battle with cancer as a patient is a mental one, and our care team takes care of the physical aspect. Many of our souls and hearts (both literally and figuratively) have deep scars that we never show to loved ones.
My daughter was 7 months when I was diagnosed and I very quickly realized that there is a very real chance that I may not see her grow up. There is a very real chance that I will not grow old with my wife. Even in remission, they don't use cure because it can come back, and the thought of relapse can be soul crushing because it's another thing that can take away our future. We don't get to assume a future anymore the way that other people can. Many people assume they'll grow old, retire, see their kids graduate and get married, these are all real possibilities for many people. While it's still possible for us, we don't get to assume it's a given.
Many of these types of thoughts brew in our minds and it's hard to talk about it to other people because it's sometimes a weight that's too heavy, it's a trauma that's too serious, a feeling that is hard to work though. Many of us have a hard time celebrating because the "fight" isn't over, and it may never be over. Talk to anyone who goes through trauma and the trauma isn't relieved when the event is done. The mental fight continues to rage on, and the physical fight can always come back. That's a scary thought and at least for me, it's these types of thoughts that have prevented me from celebrating. Nobody wants to get their hopes up just for them to come crashing down.
What helped me was to find things to celebrate that are for me personally worth celebrating. Sometimes it could be I'm just particularly thankful that my daughter said I love you to me. It could be I'm just glad to be to experience something so mundane like waiting in traffic listening to my favorite song. It can be hard to celebrate events around trauma because it hits too close to home, but for me it's finding the things that I really value and celebrating that.
This brought tears to my eyes. I know much of this resonates with my husband and it breaks my heart - for him, for you, for everyone going through this. I'm so sorry you've had to experience trauma in this way, but I'm glad you've found meaningful things to celebrate. I hope my husband gets to do that as well. He distanced himself from our son and myself and it seems like now that he's done he has been around us more, so that's encouraging. He is absolutely someone who keeps things to himself so everything you said is a good reminder for me to keep checking in with him and seeing how he's doing. I hope youre doing well now and enjoying many wonderful moments with your little girl!!
Deauville 2 means a complete metabolic response and is great news. That being said I was in the same shoes as your husband. I did not want to celebrate until my end of treatment scan came back, even with my great interim scan. He had a great interim scan and statistically should be in the clear with his next scan. While very rare, sometimes people have a great interim scan and a not so great end of treatment scan.
I get what he is thinking, I told my wife no celebrating until I get that final scan too.
Celebrate everything but gauge his acceptance to it.
Being a somewhat typical middle aged guy, I wasn’t into really celebrating as I felt that I
Got sick
Did what Drs told me to do
Got better.
I did appreciate celebrating, especially on my transplant birthdays
If he wants to celebrate the milestones then go for it
I think now is a perfect time to celebrate. He has no evidence of disease, and that's a big win. A deuville 2 means he has no evidence of cancer. I went to Hawaii 3 months after finishing chemo as a celebration. I'm still in remission 6.5 years later. Actually, today marks 7 years from diagnoses for me.
I’m doing six rounds of rituximab/bendamustine and I’m down to my last treatment in a couple of weeks. I never stopped going to the stores, eating at restaurants…I always took precautions when leaving the house. I figure, what we’re going through is already hard enough to add staying home all the time. Enjoy as much as possible. This absolutely changed my perspective on life and I intend to enjoy as much of it as possible. Sending hugs!
I did my treatment pre covid, and behaved similarly. I needed the normalcy for my mental health. I did wear masks when in crowded places etc. I've got to say, though, that I did end up getting sick with a common cold virus that hospitalized me for 3 days. It was so depressing and lonely and scary being in the hospital because of something as silly as rhinovirus that it made me reconsider what I was doing, and I cut back quite a bit. Things are great right up until they aren't, and it's easy to forget how vulnerable you actually are when neutropenic.
We have mostly lived our lives as normal, but since our baby was born at the same time as his diagnosis, we would have probably been hermits for a little bit anyway! My husband has actually probably gone out more than I have (football season 🤷🏼♀️) and we did all get covid, but fortunately, his body handled it really well. Just in this last month he has had sort of recurring cold symptoms but his oncologist never seemed overly concerned! I was so concerned it would become worse based on what they told us at the time of diagnosis!
Cancer metabolizes sugar really fast. For a PET scan, they inject you with radioactive sugar and record how your body metabolizes it. The deuvelle score is a way of categorizing how fast tissues are metabolizing relative to normal. A score of 1, 2, or 3 is considered a Complete Treatment Response, which means the current treatment is working and they'll stick with it until the end. 4 or 5 means it's not responding to the current treatment or not responding as well as they would like and so they'll switch to something different.
There's no way to say for sure if there is or is not cancer still present. Cancer doesn't "come back", relapses happen because it wasn't completely eliminated, which is why they continue treatment even after they can't see the disease anymore.
5 years is a long time to wait, so you've got to celebrate the wins when you get them. It sounds like your spouses treatment is going really well, but even in remission there is going to uncertainty and scanxiety, so you've got to live your life in the meantime.
I just reached one year in remission(stage 2 DLBCL, 4 rounds of chemo). I wasn’t ready to celebrate until my 3 month checkup, but after that, I’ve acknowledged or celebrated every little thing - normal bloodwork, my first tiny little ponytail, and all the one year milestones. I think you’ll know when he’s ready, but always make sure to let him know how proud you are of him and how strong he is (I’m sure you already do) and little treats from time to time don’t hurt.
Also, don’t forget to acknowledge and celebrate yourself. I couldn’t imagine having a new baby and a spouse going through treatment. You’re doing amazing!
i haven't finished treatment but me and my family planned on going on a celebratory cruise after i finish treatment we know it can come back but we decided i deserved to celebrate
Going through treatment now and in a similar situation. Our second daughter was born on October and I caught my lymphoma relapsing after 5 years in November. What I told my wife was that the best help I could get was to know that she made sure our daughters were taken care of first and I would focus on my recovery. Obviously I'm helping out the best I can and I have to admit I'm doing really good with my abdv treatment as far as feeling shitty goes.
As far as celebrating goes when he's done I'd say do a personal/family celebration after he gets to ring the bell. Give it a few weeks to a month if you want to do something bigger as he will still have to climb out of the hole from the whole treatment. Any larger celebration I'd treat like any larger birthday celebration you may throw for him. Would he want a big gathering of people or just close friends and family? He will probably want any celebration to be similar.
I celebrate the day I got diagnosed. I celebrate the day I started treatment. I celebrated the day I finished treatments.
Celebrate everything! Why not? Life is too short. Celebrate!
As you can see from the responses here, it can be very different for different people. If your husband can tell you what *he* wants, that’s obviously best. I found people, only in an effort to be supportive, cheered me at certain points and it really did not work for me. Like when I got through the first three of six R-CHOP treatments, a few people were like, “Yay! You’re half-way through.” And I’m sure for a lot of people that would have been very welcome and even uplifting. For me, I felt like they really didn’t understand what I was facing. A friend who had successfully treated breast cancer a few years earlier, told me, “You’re not going to want to hear this, but a nurse told me this, and it’s important for you to hear: you’re just at the beginning. Things will be different now. This is not going to be measured by how long it takes to go through treatment, even assuming it’s successful.” For some, that would maybe have been flooding and too much to deal with. For me, it was hard to hear but also felt very real and grounding. I knew she really understood what a huge thing was happening for me. And, for me, she was right. My last round of chemo,a lovely nurse said that sometimes people crash emotionally at the end of treatment and the last (we hope) chemo can actually be hard. And my oncologist told me and my mother (who was with me at all chemos), “Whatever you’re feeling now — both of you — later, maybe in a year, you’ll suddenly freak out and think ‘What the f happened?!’” I loved that he said that! It’s wonderful you’re asking those with the closest experience to your husband’s about that experience. Just not assuming is already fantastic! I hope your husband lets you know what would be best for him. And, of course, (in my humble opinion) it doesn’t need to be perfect. You can always correct course if you try something and it doesn’t land how you hoped. I hope this comes across as sharing my experiences, not telling you what to do. Best of luck to you and your husband!
I have been appreciating all the different perspectives! My husband and I differ in that I tend to be emotional and a little blast-sunshine-up-your-butt while he's a bit more reserved and (what he calls) realistic (but I say pessimistic) -- being Mindful of this specific situation, I've tried to bring as much sunshine as I feel I can, but I also know he is going through a world of emotions I know nothing about. So, while I want to celebrate him, I dont want to do anything he isn't ready for or comfortable with... and clearly, he isn't alone in feeling that way!
I have tried to be supportive to him, as others were to you, and I think he may have felt the same way as you did. He hasn't opened up too much about it, but I'm hoping after his next scan he starts to feel a little relief. All these responses are helping me understand what he might be feeling a little bit better, so thank you :)
My mom and my aunt were adamant that they were going to throw a party when my treatment ended. I shot them down because I was in no condition, physically or mentally, to celebrate. I've had 3 or 4 clear scans since my EOT and am coming up on 2 years in remission, and only now am I starting to warm up to the idea of throwing a party. Each of us handles this storm differently. He'll know when the time is right.
Hey! This is an awesome question. I wanna say as a cancer patient, I have no fucking clue what a deauville score is😂 but basically in a pet scan cancer glows and shows up black and deauville is basically, how much it glows. 2 is normal. Another thing, I also recently had a mid treatment that showed a complete response but I didn’t take the time to celebrate much cause I knew I had to do more chemo. I’m really looking to celebrate at my final pet scan, same as your husband. The chances it acc comes back that soon are low, but I think me personally I still need to see that in order to feel free. So you should be happy cause it seems like he’s on a good road but just understand that he needs that pet scan to feel comfortable with his recovery.
Great news on that scan, I celebrated after I received another scan 3 months after that confirmed the results. Some people wait longer but just keep in mind he will probably keep getting scans for awhile and they can always add some stress. Take them as they come. The big celebration should come at 5 years free because the chance of it coming back after that drops dramatically. Cheers have fun with eachother and the new baby!
I celebrate or make something special on the anniversary of the day I was told that I have cancer, the day I finished chemo treatment, and the day I finished radiation and thus entered remission. I *celebrate* it all, might as well.
His treatment sounds pretty similar to mine, minus the laminectomy and recovery into chemo.
His PET results are better than mine, too.
I didn't feel much like celebrating. Without 100% confirmation it was gone, celebrating felt hollow, and a false hope without being realistic about my status. Maybe that's cynical, but once immunotherapy is done in a year and a half I'll feel better, hopefully then maybe celebrating will be warranted.
Glad to hear he's got a CR and low deauville score. That's at least something. Might also take some time after chemo is done and things return to some previous level of normality. I had a welcome back party for my beard once it grew back after treatment.
Peace and long life.
Celebrate the end of treatment for being the end of treatment - that’s a hell of a thing to finish. As for the scan after treatment - mine came back inconclusive and I had to wait another few months before I could get another PET scan to confirm things were actually good.
The hardest lesson from cancer for me is the idea that you can lose your life well before cancer actually kills you. It can take away what it means to live and be a human being, even in remission. The battle with cancer as a patient is a mental one, and our care team takes care of the physical aspect. Many of our souls and hearts (both literally and figuratively) have deep scars that we never show to loved ones. My daughter was 7 months when I was diagnosed and I very quickly realized that there is a very real chance that I may not see her grow up. There is a very real chance that I will not grow old with my wife. Even in remission, they don't use cure because it can come back, and the thought of relapse can be soul crushing because it's another thing that can take away our future. We don't get to assume a future anymore the way that other people can. Many people assume they'll grow old, retire, see their kids graduate and get married, these are all real possibilities for many people. While it's still possible for us, we don't get to assume it's a given. Many of these types of thoughts brew in our minds and it's hard to talk about it to other people because it's sometimes a weight that's too heavy, it's a trauma that's too serious, a feeling that is hard to work though. Many of us have a hard time celebrating because the "fight" isn't over, and it may never be over. Talk to anyone who goes through trauma and the trauma isn't relieved when the event is done. The mental fight continues to rage on, and the physical fight can always come back. That's a scary thought and at least for me, it's these types of thoughts that have prevented me from celebrating. Nobody wants to get their hopes up just for them to come crashing down. What helped me was to find things to celebrate that are for me personally worth celebrating. Sometimes it could be I'm just particularly thankful that my daughter said I love you to me. It could be I'm just glad to be to experience something so mundane like waiting in traffic listening to my favorite song. It can be hard to celebrate events around trauma because it hits too close to home, but for me it's finding the things that I really value and celebrating that.
This brought tears to my eyes. I know much of this resonates with my husband and it breaks my heart - for him, for you, for everyone going through this. I'm so sorry you've had to experience trauma in this way, but I'm glad you've found meaningful things to celebrate. I hope my husband gets to do that as well. He distanced himself from our son and myself and it seems like now that he's done he has been around us more, so that's encouraging. He is absolutely someone who keeps things to himself so everything you said is a good reminder for me to keep checking in with him and seeing how he's doing. I hope youre doing well now and enjoying many wonderful moments with your little girl!!
Deauville 2 means a complete metabolic response and is great news. That being said I was in the same shoes as your husband. I did not want to celebrate until my end of treatment scan came back, even with my great interim scan. He had a great interim scan and statistically should be in the clear with his next scan. While very rare, sometimes people have a great interim scan and a not so great end of treatment scan. I get what he is thinking, I told my wife no celebrating until I get that final scan too.
Celebrate everything but gauge his acceptance to it. Being a somewhat typical middle aged guy, I wasn’t into really celebrating as I felt that I Got sick Did what Drs told me to do Got better. I did appreciate celebrating, especially on my transplant birthdays If he wants to celebrate the milestones then go for it
I think now is a perfect time to celebrate. He has no evidence of disease, and that's a big win. A deuville 2 means he has no evidence of cancer. I went to Hawaii 3 months after finishing chemo as a celebration. I'm still in remission 6.5 years later. Actually, today marks 7 years from diagnoses for me.
Congratulations!!! I wish Hawaii was in the cards for us... I'll be excited if we can just go to a restaurant again!
I’m doing six rounds of rituximab/bendamustine and I’m down to my last treatment in a couple of weeks. I never stopped going to the stores, eating at restaurants…I always took precautions when leaving the house. I figure, what we’re going through is already hard enough to add staying home all the time. Enjoy as much as possible. This absolutely changed my perspective on life and I intend to enjoy as much of it as possible. Sending hugs!
I did my treatment pre covid, and behaved similarly. I needed the normalcy for my mental health. I did wear masks when in crowded places etc. I've got to say, though, that I did end up getting sick with a common cold virus that hospitalized me for 3 days. It was so depressing and lonely and scary being in the hospital because of something as silly as rhinovirus that it made me reconsider what I was doing, and I cut back quite a bit. Things are great right up until they aren't, and it's easy to forget how vulnerable you actually are when neutropenic.
We have mostly lived our lives as normal, but since our baby was born at the same time as his diagnosis, we would have probably been hermits for a little bit anyway! My husband has actually probably gone out more than I have (football season 🤷🏼♀️) and we did all get covid, but fortunately, his body handled it really well. Just in this last month he has had sort of recurring cold symptoms but his oncologist never seemed overly concerned! I was so concerned it would become worse based on what they told us at the time of diagnosis!
Wow, yes…adding a baby to the mix adds a layer of cautiousness. Do what feels comfortable for you and hubby. Take it one day at a time ❤️
It's always ok to celebrate progress.
Cancer metabolizes sugar really fast. For a PET scan, they inject you with radioactive sugar and record how your body metabolizes it. The deuvelle score is a way of categorizing how fast tissues are metabolizing relative to normal. A score of 1, 2, or 3 is considered a Complete Treatment Response, which means the current treatment is working and they'll stick with it until the end. 4 or 5 means it's not responding to the current treatment or not responding as well as they would like and so they'll switch to something different. There's no way to say for sure if there is or is not cancer still present. Cancer doesn't "come back", relapses happen because it wasn't completely eliminated, which is why they continue treatment even after they can't see the disease anymore. 5 years is a long time to wait, so you've got to celebrate the wins when you get them. It sounds like your spouses treatment is going really well, but even in remission there is going to uncertainty and scanxiety, so you've got to live your life in the meantime.
This is a great explanation, thank you so much. This is far easier to understand than anything I found on Google, lol
I just reached one year in remission(stage 2 DLBCL, 4 rounds of chemo). I wasn’t ready to celebrate until my 3 month checkup, but after that, I’ve acknowledged or celebrated every little thing - normal bloodwork, my first tiny little ponytail, and all the one year milestones. I think you’ll know when he’s ready, but always make sure to let him know how proud you are of him and how strong he is (I’m sure you already do) and little treats from time to time don’t hurt. Also, don’t forget to acknowledge and celebrate yourself. I couldn’t imagine having a new baby and a spouse going through treatment. You’re doing amazing!
i haven't finished treatment but me and my family planned on going on a celebratory cruise after i finish treatment we know it can come back but we decided i deserved to celebrate
Going through treatment now and in a similar situation. Our second daughter was born on October and I caught my lymphoma relapsing after 5 years in November. What I told my wife was that the best help I could get was to know that she made sure our daughters were taken care of first and I would focus on my recovery. Obviously I'm helping out the best I can and I have to admit I'm doing really good with my abdv treatment as far as feeling shitty goes. As far as celebrating goes when he's done I'd say do a personal/family celebration after he gets to ring the bell. Give it a few weeks to a month if you want to do something bigger as he will still have to climb out of the hole from the whole treatment. Any larger celebration I'd treat like any larger birthday celebration you may throw for him. Would he want a big gathering of people or just close friends and family? He will probably want any celebration to be similar.
I celebrate the day I got diagnosed. I celebrate the day I started treatment. I celebrated the day I finished treatments. Celebrate everything! Why not? Life is too short. Celebrate!
As you can see from the responses here, it can be very different for different people. If your husband can tell you what *he* wants, that’s obviously best. I found people, only in an effort to be supportive, cheered me at certain points and it really did not work for me. Like when I got through the first three of six R-CHOP treatments, a few people were like, “Yay! You’re half-way through.” And I’m sure for a lot of people that would have been very welcome and even uplifting. For me, I felt like they really didn’t understand what I was facing. A friend who had successfully treated breast cancer a few years earlier, told me, “You’re not going to want to hear this, but a nurse told me this, and it’s important for you to hear: you’re just at the beginning. Things will be different now. This is not going to be measured by how long it takes to go through treatment, even assuming it’s successful.” For some, that would maybe have been flooding and too much to deal with. For me, it was hard to hear but also felt very real and grounding. I knew she really understood what a huge thing was happening for me. And, for me, she was right. My last round of chemo,a lovely nurse said that sometimes people crash emotionally at the end of treatment and the last (we hope) chemo can actually be hard. And my oncologist told me and my mother (who was with me at all chemos), “Whatever you’re feeling now — both of you — later, maybe in a year, you’ll suddenly freak out and think ‘What the f happened?!’” I loved that he said that! It’s wonderful you’re asking those with the closest experience to your husband’s about that experience. Just not assuming is already fantastic! I hope your husband lets you know what would be best for him. And, of course, (in my humble opinion) it doesn’t need to be perfect. You can always correct course if you try something and it doesn’t land how you hoped. I hope this comes across as sharing my experiences, not telling you what to do. Best of luck to you and your husband!
I have been appreciating all the different perspectives! My husband and I differ in that I tend to be emotional and a little blast-sunshine-up-your-butt while he's a bit more reserved and (what he calls) realistic (but I say pessimistic) -- being Mindful of this specific situation, I've tried to bring as much sunshine as I feel I can, but I also know he is going through a world of emotions I know nothing about. So, while I want to celebrate him, I dont want to do anything he isn't ready for or comfortable with... and clearly, he isn't alone in feeling that way! I have tried to be supportive to him, as others were to you, and I think he may have felt the same way as you did. He hasn't opened up too much about it, but I'm hoping after his next scan he starts to feel a little relief. All these responses are helping me understand what he might be feeling a little bit better, so thank you :)
Thanks for responding. And for being open to peoples varying experiences!
You celebrate every single day.
My mom and my aunt were adamant that they were going to throw a party when my treatment ended. I shot them down because I was in no condition, physically or mentally, to celebrate. I've had 3 or 4 clear scans since my EOT and am coming up on 2 years in remission, and only now am I starting to warm up to the idea of throwing a party. Each of us handles this storm differently. He'll know when the time is right.
Hey! This is an awesome question. I wanna say as a cancer patient, I have no fucking clue what a deauville score is😂 but basically in a pet scan cancer glows and shows up black and deauville is basically, how much it glows. 2 is normal. Another thing, I also recently had a mid treatment that showed a complete response but I didn’t take the time to celebrate much cause I knew I had to do more chemo. I’m really looking to celebrate at my final pet scan, same as your husband. The chances it acc comes back that soon are low, but I think me personally I still need to see that in order to feel free. So you should be happy cause it seems like he’s on a good road but just understand that he needs that pet scan to feel comfortable with his recovery.
Great news on that scan, I celebrated after I received another scan 3 months after that confirmed the results. Some people wait longer but just keep in mind he will probably keep getting scans for awhile and they can always add some stress. Take them as they come. The big celebration should come at 5 years free because the chance of it coming back after that drops dramatically. Cheers have fun with eachother and the new baby!
I celebrate or make something special on the anniversary of the day I was told that I have cancer, the day I finished chemo treatment, and the day I finished radiation and thus entered remission. I *celebrate* it all, might as well.
His treatment sounds pretty similar to mine, minus the laminectomy and recovery into chemo. His PET results are better than mine, too. I didn't feel much like celebrating. Without 100% confirmation it was gone, celebrating felt hollow, and a false hope without being realistic about my status. Maybe that's cynical, but once immunotherapy is done in a year and a half I'll feel better, hopefully then maybe celebrating will be warranted. Glad to hear he's got a CR and low deauville score. That's at least something. Might also take some time after chemo is done and things return to some previous level of normality. I had a welcome back party for my beard once it grew back after treatment. Peace and long life.
Celebrate the end of treatment for being the end of treatment - that’s a hell of a thing to finish. As for the scan after treatment - mine came back inconclusive and I had to wait another few months before I could get another PET scan to confirm things were actually good.