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Subtle changes?


Blossomsmom

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My Mom was diagnosed with a combo of Small cell & Non small lung cancer on 3/29/19. Stage 4. She went through chemo and is now on maintenance immunotherapy. She went through treatment for two reasons. First reason was she wanted to be well enough to see my daughter get married on 10/19. She was there at the wedding, did amazingly well through out what was an epic weekend. Second reason was & continues to be (I think) she isn’t ready to leave her kids, grand & great grand kids and her great great granddaughter.  She has had such a positive attitude and has amazed us all including her Oncologist. Now comes the “but”. Over the last couple of weeks I’m sensing a very subtle change in her but I can’t put my finger on what it is. I think maybe she’s tired of the routine of doctors appointments, blood draws and infusions.  Or maybe she’s just plain tired. She’s scheduled for a pet scan tomorrow (yes, on a Saturday, go figure) and maybe she’s trying to mentally prepare for what the results could be. Or maybe I’m just reading more into it then is really there. I wish I could just come right out and ask her but I just can’t bring myself to have the conversation with her. My emotions get the best of me and I go into denial mode. 
Sorry for such a long drawn out post. The ups and downs of this journey just get to me sometimes. 

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Blossomsmom,

Fortunately, I've not had a loved one with cancer but have one who loves me and cared for me during my active treatment. Ironically, my wife and I were talking about her experience and recollections during my treatment last evening.  I asked her how she coped with my proximity to death and her answer struck me as wise indeed. She admitted she could do little to influence my life continuance but resolved to stay with me throughout the process to ensure I would not be alone. 

The ups and downs of lung cancer are indeed trying and death is not a pleasant topic. But it is a reality of life we all face. Your mom could be experiencing an emotional let down after the excitement of the wedding. Let us hope that is the cause of her attitude change. Give her another challenge to focus on. I pray the test results are good.

Stay the course.

Tom

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As always Tom, thank you for your wisdom and sharing your experiences. They are invaluable. I do think part of what is going on with my mom is the after the wedding letdown. We were so focused on it for the previous six months and what it took to get her there that we didn’t think about the “afterwards”, I couldn’t and I don’t think she could either. So now reality has hit struck once again. Your wife is right, we have no control when it comes to the outcome. And I will be there with her until the end whenever and however that will be.

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On 11/22/2019 at 12:29 PM, Blossomsmom said:

My Mom was diagnosed with a combo of Small cell & Non small lung cancer on 3/29/19. Stage 4. She went through chemo and is now on maintenance immunotherapy. She went through treatment for two reasons. First reason was she wanted to be well enough to see my daughter get married on 10/19. She was there at the wedding, did amazingly well through out what was an epic weekend. Second reason was & continues to be (I think) she isn’t ready to leave her kids, grand & great grand kids and her great great granddaughter.  She has had such a positive attitude and has amazed us all including her Oncologist. Now comes the “but”. Over the last couple of weeks I’m sensing a very subtle change in her but I can’t put my finger on what it is. I think maybe she’s tired of the routine of doctors appointments, blood draws and infusions.  Or maybe she’s just plain tired. She’s scheduled for a pet scan tomorrow (yes, on a Saturday, go figure) and maybe she’s trying to mentally prepare for what the results could be. Or maybe I’m just reading more into it then is really there. I wish I could just come right out and ask her but I just can’t bring myself to have the conversation with her. My emotions get the best of me and I go into denial mode. 
Sorry for such a long drawn out post. The ups and downs of this journey just get to me sometimes. 

Hello Blossoms mom.  There are times when I (a patient) have little energy, little drive, little will to live.  It is normal.  It does pass.  The worst is waiting for scans.  I call it scanxiety! Mine starts about 2 weeks before I'm due for scans and lasts until I get results. It's a real thing.  For me?  I appreciate the come right out and ask questions. I want my children to talk to me. I want to know their fears! Helping them work through it, helps me work through it. Good luck to you. Stay strong!

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Hello Blossomsmom (forgive my other replies to your posts as I'm new to navigating this site). I agree with RondaBeaty. I'm fighting stage IV lung cancer and have also been a caregiver of my best friend, my mom. It's harder for the caregiver than the patient in so many ways. Your mom knows that and would probably love to help her daughter through a tuff time. Your mom needs to be needed just as you do by your grown babies. If you let her help you through your fears and anxiety it could possibly help her by focusing on something other than the overwhelming cancer elephant in the room. I can only hope the suggestion helps.

Wishing you both well, prayers🌻

 

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Thank you Rhonda, I appreciate your reply. I know there are times when she hasn’t the energy or the will the keep going but has fought her way past it. But it’s always in the back of my mind, how many times can she muster up the fight? I know she’s glad her scan today is over. She said she’s glad her next one won’t be until next summer. Signals to me she’s not ready to throw in the towel quite yet. Do your kids ask questions just out of the blue or do they respond to discussions you’ve started? My mom tends to hold everything in and it makes it really hard because I tend to do the same thing. Learned behavior a result of living with her husband/my father who never wanted to hear how we felt especially if it wasn’t what he deemed an appropriate subject or god forbid something that made us sad. But I digress. It’s funny, she’s 90 but I never really thought much about her passing UNTIL her cancer diagnosis. I guess it’s because she could always give the energizer bunny a run for his money! Hopefully her scan results will be good and she’ll rally once again and enjoy the holidays.

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On 11/22/2019 at 12:29 PM, Blossomsmom said:

My Mom was diagnosed with a combo of Small cell & Non small lung cancer on 3/29/19. Stage 4. She went through chemo and is now on maintenance immunotherapy. She went through treatment for two reasons. First reason was she wanted to be well enough to see my daughter get married on 10/19. She was there at the wedding, did amazingly well through out what was an epic weekend. Second reason was & continues to be (I think) she isn’t ready to leave her kids, grand & great grand kids and her great great granddaughter.  She has had such a positive attitude and has amazed us all including her Oncologist. Now comes the “but”. Over the last couple of weeks I’m sensing a very subtle change in her but I can’t put my finger on what it is. I think maybe she’s tired of the routine of doctors appointments, blood draws and infusions.  Or maybe she’s just plain tired. She’s scheduled for a pet scan tomorrow (yes, on a Saturday, go figure) and maybe she’s trying to mentally prepare for what the results could be. Or maybe I’m just reading more into it then is really there. I wish I could just come right out and ask her but I just can’t bring myself to have the conversation with her. My emotions get the best of me and I go into denial mode. 
Sorry for such a long drawn out post. The ups and downs of this journey just get to me sometimes. 

15 hours ago, Blossomsmom said:

Thank you Rhonda, I appreciate your reply. I know there are times when she hasn’t the energy or the will the keep going but has fought her way past it. But it’s always in the back of my mind, how many times can she muster up the fight? I know she’s glad her scan today is over. She said she’s glad her next one won’t be until next summer. Signals to me she’s not ready to throw in the towel quite yet. Do your kids ask questions just out of the blue or do they respond to discussions you’ve started? My mom tends to hold everything in and it makes it really hard because I tend to do the same thing. Learned behavior a result of living with her husband/my father who never wanted to hear how we felt especially if it wasn’t what he deemed an appropriate subject or god forbid something that made us sad. But I digress. It’s funny, she’s 90 but I never really thought much about her passing UNTIL her cancer diagnosis. I guess it’s because she could always give the energizer bunny a run for his money! Hopefully her scan results will be good and she’ll rally once again and enjoy the holidays.

Good morning Blossomsmom.  My children are pretty tight lipped.  They don't like to talk about it.  They definitely don't like that I have taken great pride in getting all of my affairs in order (cremation prepaid, cemetery lot, head stone, etc). However, it gives me great comfort to know all of the (dirty deeds) are done.  My headstone was just placed and neither of my girls will go look at it with me.  There are times when I say - "we are having this discussion for me, not for you".  When I take that approach they will listen and sometimes even provide feedback.  My youngest holds everything in.  She is the one I worry about the most.  When I tell her this, it angers her.  I tell her "if you would talk about it with me, I wouldn't worry".  That usually gets the conversation started.  I see a psychiatrist (as part of my medical team). She has been instrumental in giving me ways to bring the subject up.  Talk to you mom.  Tell her your concerns. Explain to her that her fears are real, and so are your, no matter how different they may be.  My boyfriend (whom I live with) has been with me since day one. He definitely doesn't like to talk about it.  I can tell when he is bothered by a scan result or just bothered by the unknown. I approach him with caution, and have learned when he will respond positively and actively participate in the conversation.  Definitely talk, keep the conversation going, and let it rest when required.

 

Hello Blossoms mom.  There are times when I (a patient) have little energy, little drive, little will to live.  It is normal.  It does pass.  The worst is waiting for scans.  I call it scanxiety! Mine starts about 2 weeks before I'm due for scans and lasts until I get results. It's a real thing.  For me?  I appreciate the come right out and ask questions. I want my children to talk to me. I want to know their fears! Helping them work through it, helps me work through it. Good luck to you. Stay strong!

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Hi @Blossomsmom   You’ve gotten something really good advice from others.   I’ve had the terrible experience of being the caregiver and the patient.   I recall the first time I got upset in front of my dad (the patient), about nine months after his diagnosis.  His response stunned me.  He was genuinely surprised that I was so upset.  All of us had done such a good job of being stoic for him that we left him feeling like it wasn’t as upsetting to us as it was to him.  We were all devastated but our putting on a brave face in front of him and falling apart out of sight left him feeling like it wasn’t as hard on us as it was.  Now being on the patient side I have the full perspective.  You know your mom best.  If she’s been the type of person in the past to want to discuss things then she probably wants to discuss this but avoids it to protect you.  I’d say if you have something you want your mom to know or want to know something from her ask.  Don’t push, but ask.  
 

Regarding her change in demeanor that can be a lot do things.  She may not even be aware of the change.  The after wedding blues could be it. Her coming to terms with her own mortality can also be it.  I remember the day it happened for my dad, he had gotten sole very bad news in terms of prognosis .  There was a very different emotional change for him.  If your mom is not getting emotional support it may be a good idea to get it for her   A support group, psychiatrist, therapist or religious leader.  Talking helps and can energize someone.

A cancer battle is a roller coaster physically and emotionally.  Your mom is incredibly lucky to have you.  Follow your instincts and don’t let things go unsaid if they are important to you or you think they are important to her.  It doesn’t have to be a before you die conversation.  Just a conversation about how you feel and give her the opportunity to tell you how she feels.  When I had those conversations with my dad I told him that I’d watched him deal with life’s challenges my whole life and that he was a role model for me.  I told him that how he was dealing with this and how he felt could help me deal with something similar in the future if I had to confront it.   Him helping me helped him, but it turns out it’s probably helped me more.   

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Thank you all for you insights, suggestions and support, I can’t tell you how much I appreciate it!  I will be going with my Mom on Wednesday to get the results of her pet scan last Saturday. In the past when we’ve gotten results (good and bad) it has opened up discussions between the two of us. I think after her appointment on Wednesday the same thing will happen but I think because of all of your words of wisdom I will be more prepared to really talk to her about how she feels and hopefully tell her what my questions and concerns are. Why is it we try so hard not to upset each other when we talk about things that are incredibly upsetting by their very nature? 

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Saw the oncologist today. Results of Petscan were not what we we’re hoping for. The tumor in my moms right lung is 65% bigger than it was in June with new right hilar adenopathy measuring 1.5cmm. So the doctor suggested trying chemo again and my mom agreed. So she will start chemo again a week from Friday. Most likely Taxotere or Gemzar. Not sure yet which drug yet, Dr wanted to do a little research on them both first given my moms age. So here we go. But as with every dark cloud, there was a silver lining. After we got back to her house & both of us danced around the elephant in the room, we talked about a lot of things that we haven’t talked about since this started. I told her to please never hold back asking the doctor questions for fear the answer will upset me. We can only deal with the answers when we have them and the only way to get them is to ask the questions. She voiced her thoughts on  quantity vs quality & that she will continue treatment until such time it no longer works or it effects the quality of her life negatively and then she’ll say enough is enough. I told her I would go along with whatever she decides to do because I know she will make the right decision for her. I came away with a sense of relief as she did I think. I also now know that the subtle change I was seeing in her was because she said she knew deep down that the results of the pet scan were not going to be good. Intuition? I think so.

My heartfelt thanks to all of you for your advice and encouragement all of which made a huge difference in my life today ❤️

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I’m sorry to hear about the progression.  I hope the treatments are successful in fighting it back.  I’m glad your conversation went well.  I remember it feeling like a weight lifted.  

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