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[59m] EGFR exon 18 turned to small cell. Diary of a [28m] caretaker.


Kwally3

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Kwally3,

Wow, your Dad is a real trouper.  He is battling cancer and covid19 at the same time and, by all measures, he's soon going to be able to put Covid19 behind him.  That is super.  You have an interesting plan regarding the China-approved medication.  For my part I would consider all options as well as you are doing.  I will continue to see what happens in the future.

Thank you for the updates.

Lou

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  • 2 weeks later...

My dad passed this morning. I’m in a state of shock and regret that I wasn’t able to hug him at all these past two weeks. This was not the way it was supposed to go. He was fine but in chemo pain just yesterday having gotten chemo the past Friday.

did you guys decide to find cause of passing? Part of me wants to know if it was covid related, chemo, heart attack? Maybe I could have done something to prevent it. But that is also could be invasive.
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edit: For future readers, here are details. If just one caregiver finds this helpful in preparing, then this will be worth it.

Dad seemed to have recovered from COVID. Last Tuesday, his COVID test came back negative and his symptoms had been mild throughout. I don't know if the complications were due to COVID or chemo or something else.

My dad's significant other who is staying with him said he was mostly awake the entire night, albeit uncomfortable due to having gotten his chemo 2 days prior. He took his pain medication around 1am and again at around 5am and even went to use the bathroom. At around 6:30am he was drifting into sleep.  She noticed something a bit off and asked him something and he didn't respond. That's when she discovered his pulse was very weak. She called me at 7:04am and I wish I saw the call--I was driving, and it was one of the few days my cellphone was on vibrate. She speaks Chinese so she didn't know she can just call 911 and they will send someone over to the location of the cellphone. My cousin called me to call my aunt since, and I did so at 7:07am. I wish I asked for details, she must have been in shock and just screamed at me to come home (I'm 10min away). She called again at 7:16 telling me to call 911. I arrived at 7:20 and firefighters began CPR at 7:30am. He was pronounced a few minutes before 8am. The police showed up to take pictures. They gave us contact for the local mortuary, and the officer shared his story about his experience of his gradnfather's passing and what to expect. He even offered his cell, if I needed someone to talk to. They tell me it likely would not have made a difference even if they got there earlier, but it haunts me thinking how things might have turned out differently. If I asked for details, the fire fighters could have arrived at 7:15am. 

She told me later that yesterday dad's digits were a bit cold. He disagreed on going to the ER. They thought it was due to cold weather and that his inability to sleep and the pains were related to the chemo, since the first 3-5 days are really uncomfortable. But, if I was there, maybe we would have succeeded in convincing dad or even tried the pulse oximeter, it would have picked up low o2 if the cold extremities were indication of lack of oxygen in his blood supply. My biggest regret was not reminding my aunt and dad more of the warning signs. And, not being there with him the past 3 weeks while he isolated due to COVID. He was still taking his daily walks so I could have tagged along at a safe distance. 

I was going to move back in starting next week, which was when the oncologist felt comfortable there definitly wouldn't be any chance of infection. We were going to finish his living trust. I feel terrible that I didn't take the lead and help him finish it before COVID, or even in the first year, when there was plenty of time. That would have been just one fewer item for him to worry about, knowing that the transition will be smooth. As a caretaker, there is an inertia that you don't want him to think about the potential bad outcome by mentioning living trust, and he seems ok so you think it's ok to delay it a week. Then another week. And, because he was traditionally the doer of the household, you let him take the lead. But, it's much easier for you to do the busy-work for him of making appointments and printing documents. 

For us, our living trust is half done. The house will go to me, as he intends (though in a tax inefficient manner because we didn't put it into the trust, but that's ok) but we didn't finish setting up so that his bank accounts would go to the living trust. I'm meeting with our estate attorney on what this means. Big picture, it isn't an issue, and I hope dad as he watches over us knows that it isn't an inconvenience at all.

Right now, I have moved in with my uncle (dad's brother). Dad's sister and him are helping out, and I am so grateful for them. Talking amongst each other, I recognize that as unexpected as it was, he passed away on a happy note. Although he had pain, the past few days he was smiling, ate a lot, and was full of spirit in making plans for after the chemo side effects wore away. It wasn't a painful final stop with many complications, fluid in lungs, pain, altered mental state due to disease progression. I just wish we could have had one last walk around the block together, one last meal, one last hug. Covid took away my final 3 weeks with dad. I miss him so so much. 

   

 

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Kwally,

Very sorry to learn of your Dad's passing. I really appreciate you giving us insight into his treatment. Your testament will live on in our forum to help others who battle this horrid disease.

If you are asking about an autopsy to determine the cause of your Dad's death, know that these procedures can be out-of-pocket cost. They can be quite expensive and also complicate the scheduling of funeral arrangements.

Stay the course.

Tom

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I am very sorry for your loss.  I applaud your compassion and love for your dad. I am sure you will have good memories for the rest of your life. 

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Kwally, I'm very sorry to hear of your dad's death. He was fortunate to have you as his caregiver. We here at the Forums are fortunate that you shared his and your story with us.

As to finding out the cause of death, here's what I think.You said that  part of you wants to know his cause of death to see if you could have done something to prevent it In a way, it seems like you're being open to blaming yourself.  I suggest you just take care of yourself right now, in the same loving and compassionate way you took care of your dad. Knowng details won't help him and it won't help you. Just know you did your best for him. That's all any of us can do as caregivers.

My mother died from metastatic breast cancer. Her chemo had caused disabling neuropathy which resulted inher being confined to bed  Probably from being bed bound she developed a blood clot which cut off circualtion to one leg? . So  I might ask did she die from neuropathy?, the chemo? the leg blood clot? some other blood clot or related heart problem?  The cancer that had metasized widely. Technically, no one knows. I feel OK simply saying and believing she died of cancer, since it was all related.

I'm sure your dad passed knowing he was loved and cared for.

I wish you comfort and peace.

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My prayers go out for you and your family.  Sometimes the body can only take attacks from so many sides before it fails.  An autopsy may give you more answers or not.  But will knowing all the details change anything at this point?  As Tom said, it can be expensive, not always conclusive as to the exact cause of death and interfere with whatever arrangements you were planning at this time.  Thank you for sharing so much with us.  I feel lucky to have found your posts and edified by reading them.

Lou

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@LouT@BridgetO@Rower Michelle @GaryG @Tom Galli @Jennedy


Thank you everyone for your thoughts. My world at times feels inside out, and I'm trying to keep busy by helping my cousins move, but being able to share with you and reading your well wishes help make it all a bit more bearable. I'm slowly following the advice of reaching out to close friends and not keeping it all in. Even if they don't know what to say, I tell them to share news about their lives, and I find that it helps.


I've updated the previous post with more details of what happened. Right now, my uncle and I are making memorial arrangements while my aunt in china is coordinating people for the video memorial. 

 

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  • Kwally3 changed the title to [59m] EGFR exon 18 turned to small cell. Diary of a [28m] caretaker.

Kwally3, I'm so, so sorry.  It is so obvious by your posts how much you cared for your dad and I'm so sorry Covid took away these last few weeks.  Thinking of you and your family and please let us know if we can support you in any way.  I'm going to link the resources for grieving so you can refer back to them if you ever need them.  

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Hi, Kwally,

I'm so sorry for your loss. I agree with everything Bridget said--none of us knows the future or how each event is gonna unfold. You did your best, and from everything I can see, that was pretty damn good. We always think, "If only I'd known," but really, if we actually DO know we spend that final precious time being sad and stressed out about what's coming. Your dad died feeling hopeful about the future. Given the fact that none of us knows what tomorrow will bring, that's about as good as it gets.

Sending you and your family many warm thoughts. 

I lost my mom almost 35 years ago to metastatic breast cancer. I still miss her and I'm sorry my kids never got to know her. But I enjoy my memories of her now and when I dream about her (lol, I often dream about the arguments I used to have with her when I was growing up), I feel like I got to have a visit with her. 

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  • 5 weeks later...

Dear Kwally,

I am so sorry for the loss of your father, may he rest in peace. He seems like a real warrior to me. I'm sure that we all have regrets regarding the passing of our loved ones and I suppose that it is a part of griefing for them. I'm convinced that you did the best you could and no one can expect for more. I am also very thankfull for your detailed documentation of your dad's story, it is indeed very helpful for all of us. I hope you are doing well.

Take care!

Kata

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Kwally, I'm sorry that I missed your recent posts, especially about your father's passing. I was attending to my own father's health crisis from which I did not expect he would survive (he did but with diminished quality of life). Covid has made being there extremely difficult. 

You've been such a great caregiver, and the posts you've written tell a story of the wonderful love between you and your father. We grieve with you and we can only hope to be supported as well as your father was. 

Please don't have any regrets. You couldn't have done anything more for your father. I hope you can find peace in the coming weeks and months. All the best. 

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@LUNGevityKristin @LexieCat @katavrga @Judy M2

Thank you all for your kind words. Judy, I'm so glad to hear that your dad made it through. The internet is vast but know that I'm on the other side hoping he has many many more days. I think I'll give a couple more updates and also eventually reorganize the content of the earlier posts summarizing what I want every other caregiver to know going into this.

February 20, 2021:

Update on myself and situation. I think I'm mostly over the grieving period now. I was initially alarmed that it lasted only 1 week in the sense that I was mostly ok throughout the day and evening. I thought I loved him more than that, but I think grieving is different for everyone, and that my sharing what happened and crying over the phone to 6 friends may have sped that up (note: very helpful to let out your grief with someone. it helps with the healing). I still have moments usually late at night or right before waking where I miss him, often thinking back to what if I had set my iPhone to "sound mode" and so caught the call and was able to get 911 to show up 10 minutes after cardiac arrest. But, a month out, these moments are brief. 

Today, I retrieved some of his old clothes that we tossed out. Chinese custom is to bury all his ashes, and we sent him away with his favorite clothes. So, those clothes are like a keepsake reminding me of some of his old childhood memories of him. Future caretakers or patients, I encourage you to record videos of your normal daily interactions with your loved ones. Still pictures don't capture the soul of who you are. You may have lost hair and not like your new look, but your loved ones will see past that and only see their love for you. Watching him talk about a new bread recipe we had him try and the shaky videos of our conversations as we strolled around the neighborhood helped during the grieving. Even now, I go over some of the old videos a few minutes at night. 


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Continuing from last post of things that happened.
 

The first week:

Our oncologist called us a few days after dad's passing to express her condolences. She's was so gentle and just as surprised as we were. She said she doesn't know what happened, that she spend the morning looking over all his recent results and blood work. From what we described to her, she says it could have been a blood clot that traveled to the lungs, causing cardiac arrest. However, his bloodwork the day of the chemo showed no warning signs. It's possible that COVID may have increased the chances of the clot, but there just isn't enough data. I wanted to ask her if things would have turned out differently had we sent him to the ER (apparently, his GF did suggest him to go to the ER because his pain seemed a bit different than before but he refused), but that's when his brother (they had the strongest bond) joined the call, and I got the impression that he didn't want to know any hypotheticals. That it was due to complications arising from cancer and that, though we can't take any solace in having been there in his last moments or shared our last goodbyes and love with him, that we can take solace in knowing he avoided a painful end arising from an altered mental state and organ failures which can accompany the end stage. 

The next few days after the passing was numbing. For other caretakers, please do not be alone during this time of grief. I immediately moved in with my uncle and was so fortunate for the support of my friends. I texted a few close friends, initially just saying dad passed then asking some others if we can chat, and that they can just share what's happening in their lives. I must've cried over the phone to 5 friends as I described what happened and my regrets those few days afterwards. There'd be moments when tears would just flow as I drove, at night in bed, etc. Sharing what happened to others and letting the tears out I think helped come to terms with some of the grief.

People will offer support. The ones that say if you need anyone to talk to, take it. I used to think that people were just saying it but secretly hoping that you won't ask them to talk because it could be awkward, but that is wrong. Some of them have experienced similar and know how helpful it is being heard, while others just want to be able to support you even if they have not gone through similar grief. Being surrounded by all that grief, knowing there are other people who care for you and letting them in to support you somehow made it a bit easier. I've formed closer bonds with some of them, seeing them ignore their inconvient international time zone to call me and offering to fly across the country to stay with me if I were alone. They even got the closest one (2 hours away) to drive over and deliver all their cards and flowers.  

His body was taken to the mortuary an hour after the police left. We assisted the transporters to put dad on the gurney and carry him into the car. You'll collaborate with the gentle souls there on the planning of the services. We choose to go with open casket viewing at home so they embalmed dad. I don't think we sent a good picture because the embalmer's interpretation of it didn't make dad look like dad. We brought them clothes and watched them dress dad (the body becomes stiff so it's hard to dress, and we didn't want to do any damage).

The day before the service, we drove dad to two of his favorite spots, stopping for a few minutes each time. The night with dad at home, we played his favorite songs from YouTube and had a picture montage playing for people who wanted to say some words over zoom. After the service, the people from the mortuary took dad back to the mortuary until cremation. A week later, we met them at the cremation site to give dad his final clothes to go with him and say some words.

 


 

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Good to hear from you! I'm glad to hear that you are healing. I think for most of us dealing with a loss like this, it's not a linear process. There will be times you surprise yourself with your reaction to memories--some may make you feel terribly sad, and some may make you smile or even laugh. It's all good and all part of the process.

Sounds like you have a good support system in place.

Keep in touch--your posts are very enlightening.

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Kwally, you nailed it when you said your father avoided an altered mental state with organ failure. That is a difficult thing to watch your loved one go through. It scars you for life. 

Although unwanted, cardiac arrest is almost a better death. My mother died from it 7 years ago. She was healthy and working in her food bank when she suddenly collapsed. That afternoon, we told the hospital to remove her from life support. We are comforted that she did not suffer. 

You are a great writer, and your posts and insights are so appreciated. Thanks for being a member of this family. 

If you'd like to get together, please message me. We could meet outdoors somewhere at your convenience and just talk if you like. (I'll be getting my 2nd vaccine this coming week.)

All my best. 

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I'm so beyond sorry for your loss, Wanfang. What a horrible shock to the heart, I'm inspired by how you've handled it. You've been such a help to me while I navigate my own dads journey - your bravery and loving approach to your dads care has given me a lot of strength. 

Please take care of yourself and keep on keeping on with all the excellent advice others have given here. 
 

All the best to you,

Mimi

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  • 4 weeks later...

Kwally, I'm so sorry to hear about your dad's passing. I have been searching for answers as I'm going through something similar with my mom thank you for your contributions. I know you might feel weird about how you grieved but you have to think about all the grieving you did along this journey not just after his passing. Some people don't have that time to come to terms with things and it's think that might make them process seem longer whine in fact you probably grieved in smaller portions over a much longer period of time. You're father would also not want you to be in pain. I am really having a lot of regret about things I can't do with my mom because of Covid she seems so depressed. I hope things are getting better for you. I'll keep you in my thoughts.

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