Steff

My heart is broken yet again.  Teri was such a wonderful person.  The first time I met her at the 2018 LUNGevity Summit, she had on this really cool leather bracelet.  I later found a similar one and had to have it because I loved her so much.  Every time I wear it, I think of her.  Now my heart will be a bit heavier when I put it on.  Love you LexieCat 🧡

Susan - I echo your and Tom's thoughts - my mom says all of the time...I didn't beat lung cancer to die from this crap! lol
I've been lucky enough to work from home too.  I've come to absolutely love it and dread the day I must return to a physical office and coworkers (who aren't the furry, 4 legged type).  As a part of management, I have had a voice in what our "new normal" will look like.  My state has 4 phases of start-up, each County is considered a separate entity (apparently COVID doesn't cross county lines!).  My county just entered Phase 2 (don't ask what that all means because I have no idea!), but it does mean that we are getting closer to going back to "normal" in a month or so.  Now that I have a general timeline, my anxiety has peaked.  I feel that if I am forced back into my physical office, I have to choose between my job and hugging my parents.  I hate that this is a choice we have to make not only for ourselves but our loved ones.  While I am less worried about myself or husband contracting the virus, our isolation is driven by our need to see our family. 
Although my concern has not been related to recreational activities at this point, I have given some thought as to what future concerts and similar large events will look like.  I'm scared to think about it because my mom and my favorite thing to do is go to concerts.  She has also gotten into the local non-professional hockey team in her town.  I got her season tickets this year (prior to COVID) because she had so much fun with her friends at the games last year.  I am sort-of hoping that the season will be cancelled so my mom isn't torn as to whether she should go or not.  I really wish you had a crystal ball so you can tell us what to expect and what to do! lol

Tom - we're going to need a bird-cam set up in your yard - livestream!

Bridget O - I used to have a magic wand, given to me when I first entered into social services.....but lost it years ago. I tried using it several times, but apparently I don't know how to use them and it was a complete failure 😁 

Susan - I echo your and Tom's thoughts - my mom says all of the time...I didn't beat lung cancer to die from this crap! lol
I've been lucky enough to work from home too.  I've come to absolutely love it and dread the day I must return to a physical office and coworkers (who aren't the furry, 4 legged type).  As a part of management, I have had a voice in what our "new normal" will look like.  My state has 4 phases of start-up, each County is considered a separate entity (apparently COVID doesn't cross county lines!).  My county just entered Phase 2 (don't ask what that all means because I have no idea!), but it does mean that we are getting closer to going back to "normal" in a month or so.  Now that I have a general timeline, my anxiety has peaked.  I feel that if I am forced back into my physical office, I have to choose between my job and hugging my parents.  I hate that this is a choice we have to make not only for ourselves but our loved ones.  While I am less worried about myself or husband contracting the virus, our isolation is driven by our need to see our family. 
Although my concern has not been related to recreational activities at this point, I have given some thought as to what future concerts and similar large events will look like.  I'm scared to think about it because my mom and my favorite thing to do is go to concerts.  She has also gotten into the local non-professional hockey team in her town.  I got her season tickets this year (prior to COVID) because she had so much fun with her friends at the games last year.  I am sort-of hoping that the season will be cancelled so my mom isn't torn as to whether she should go or not.  I really wish you had a crystal ball so you can tell us what to expect and what to do! lol

Susan - I echo your and Tom's thoughts - my mom says all of the time...I didn't beat lung cancer to die from this crap! lol
I've been lucky enough to work from home too.  I've come to absolutely love it and dread the day I must return to a physical office and coworkers (who aren't the furry, 4 legged type).  As a part of management, I have had a voice in what our "new normal" will look like.  My state has 4 phases of start-up, each County is considered a separate entity (apparently COVID doesn't cross county lines!).  My county just entered Phase 2 (don't ask what that all means because I have no idea!), but it does mean that we are getting closer to going back to "normal" in a month or so.  Now that I have a general timeline, my anxiety has peaked.  I feel that if I am forced back into my physical office, I have to choose between my job and hugging my parents.  I hate that this is a choice we have to make not only for ourselves but our loved ones.  While I am less worried about myself or husband contracting the virus, our isolation is driven by our need to see our family. 
Although my concern has not been related to recreational activities at this point, I have given some thought as to what future concerts and similar large events will look like.  I'm scared to think about it because my mom and my favorite thing to do is go to concerts.  She has also gotten into the local non-professional hockey team in her town.  I got her season tickets this year (prior to COVID) because she had so much fun with her friends at the games last year.  I am sort-of hoping that the season will be cancelled so my mom isn't torn as to whether she should go or not.  I really wish you had a crystal ball so you can tell us what to expect and what to do! lol

Tom,
I should have hired you as my new consultant with your knowledge of travel insurance.  As much as I don't want to admit it, I'm pretty sure I'm home for the long haul. My husband and I are considering an RV as a travel option because we can get away but not be reliant on others to clean up after us, feed us, etc. 
I'm with you - I didn't beat lung cancer to get taken out by this, either. I have plans!

Susan,
I've had so many scheduled trips cancelled, I've become an expert in travel insurance claims!
My medical team all suggest a strict quarantine till herd immunity is established. This due to my very low pulmonary capacity and the primary attack point of the virus is my under capacity lung. I'm sitting this one out confined to the house or driving Martha to a shopping destination and remaining in the car. Martha disinfects everything brought into the house including Amazon packages and the mail. 
There is much clamor to open the nation and oddly I think that is a good idea. There won't be herd immunity till the virus spreads through a large portion of our population. A vaccine may help but I'm troubled by reports I've read about re-infection with COVID-like symptoms. So this may behave like our annual flu virus where virologists take a best guess at a vaccine formulation that may not have any effect on the virus in circulation. 
One more thing I think about---I don't want to have waged a successful campaign against lung cancer to be taken out by a simple virus! So, I am staying inside and....
Staying the course.
Tom

Congrats Tom! Love the blue!

Thank YOU, my friend!
UGH, I am so sorry for the texts and the comments from the aunt brigade. I totally get it, and I know everyone here totally totally understands. Don't you just love when folks' idea of help is help that they can give on their schedule and with their own priorities and preferences?
I'm especially sorry that your aunt's particular sort of self-care is harmful, and that you have to witness that on top of everything else you are dealing with. 
Thank you for the sense of perspective: I have often come close to thinking that one advantage of not having much local family is the lack of interlopers, but I have yet to be wise enough to think that through. Thank you for sharing this nugget of truth with me! You are so right that managing help--wanted or unwanted--is a job unto itself. They don't call them "personal assistants" for nothing! Ha!
And thank you, also, for the point about the to-do list. It is so profound what ticking through a list can do for your soul, isn't it? You raise such a phenomenal point about the list giving us some modicum of control over our days!
I am SO thankful for you, as well. Thank you so much for your kind words, my friend. We are all a family and we are all in this together!
💚💚💚

Danielle,
As always you have eloquently put into words how I feel every freaking day!  Thank you!  
My to-do list is sometimes the most satisfactory thing I have during my day (especially since I gave up "bad carbs" at the beginning of the year! lol).  My to-do list is the only thing I have control over most days.  And although, 4 years into this, the to-do list has less to do with cancer related stuff (right now anyway), I feel it is still my way to have some control over the crazy life of a lung cancer caregiver/advocate.  
I have an aunt that always tells me to get some sleep or, take care of myself, when her idea of taking care of herself is heavy drinking.  She always says she is there if I need any help, but it's only help that she wants to give when it is convenient for her.  Her way of helping is to text me late at night (when she's inebriated) to tell me thinks like "I think your dad needs to go to a rest home so your mom can focus on herself" or "Your parents need to sell their house to get something smaller", and the list goes on and on and on and on....  On one hand, I sometimes feel closed off because our family and support system is tiny (2 aunts is all), but on the other hand, I only have 2 other people telling me to get some sleep.  No matter what the situation, managing the "do gooders" in our life is a full-time job in and of itself!
Your support for your mom and dad is so similar to mine that it is scary.  We are 2 peas in a pod and I am thankful for you every day.  
Take care, my friend, (or don't, do what you need to!)

I agree. If there is a miracle cure there would not be any people with cancer and it would be all over the news. I do however, believe there are things that are truly helpful. For me it was the following: Faith that it was possible to survive, second or third opinions, humor because not only is it healthy and releases dopamine into our system and because the whole reality of cancer is so surreal of course the people in our lives support.  I had a lobectomy 14.5 years ago, then stage IV metastasis 13 years ago and finally a a metastasis to my brain 11.5 years ago. The doctor that saved me was not the doctor who told me they couldn’t offer me much but the second doctor who said we can do this!  He also added to my chemo a drug called Avastin and I have called that my miracle drug. It prevents cancer cells from collecting blood vessels. Now I am only dealing with the late effects of surviving and that’s fine with me. 

On 12/20/2017, when the pulmonologist came into the room and said "It's bad. It's cancer" then proceeded to give me the diagnosis of Stage 3, I naiively asked her about the survival rate.  She said "15% survival rate in 5 years" and I believed it.  What she told me sounded like "you will die at any moment!" - I went home and wasn't sure if I should write the will first or start cleaning out my house.  Shortly afterwards, I found this forum and started reading the threads and your comments on these "statistics" resonated with me the most along with "if I can survive it, so can you" comment.
Thank you, Tom, for being my and all others' wind beneath our wings (pardon the cheesy-ness).
MB

Tom,
I am sorry for the loss of your friend.  It sounds like she lived a life we all should strive for.  That being said, thank you for this.  Living a full life DESPITE lung cancer isn't something I would have ever accepted 1 year ago for my mom.  Accepting that we will likely only ever hear "Your cancer is stable" and never hear "There is no evidence of disease" has also been hard for me to except.  But hearing stories like this and meeting wonderful folks at the HOPE Summit has helped me to begin to come to acceptance.  My mom and I's daily phone conversations have turned from lengthy discussions about lung cancer to what creation did she work on or what kind of shenanigan did my dad cause.  It's a much needed break for the both of us.  I appreciate hearing how 2 tenured lung cancer survivors talked about all things "life" instead of all things "lung cancer".  So once again, thank you.  Your post put a smile on my face and solidified that it is okay to go on with life.
Take Care,
Steff

Tom,
I am sorry for the loss of your friend.  It sounds like she lived a life we all should strive for.  That being said, thank you for this.  Living a full life DESPITE lung cancer isn't something I would have ever accepted 1 year ago for my mom.  Accepting that we will likely only ever hear "Your cancer is stable" and never hear "There is no evidence of disease" has also been hard for me to except.  But hearing stories like this and meeting wonderful folks at the HOPE Summit has helped me to begin to come to acceptance.  My mom and I's daily phone conversations have turned from lengthy discussions about lung cancer to what creation did she work on or what kind of shenanigan did my dad cause.  It's a much needed break for the both of us.  I appreciate hearing how 2 tenured lung cancer survivors talked about all things "life" instead of all things "lung cancer".  So once again, thank you.  Your post put a smile on my face and solidified that it is okay to go on with life.
Take Care,
Steff

I am the cared for, I want to say thank you to all the caregivers.  My husband and caregiver said the saddest and sweetest thing.  “We still have quiet intimacy, a touch, a smile, a kiss.”  Embrass those moments.

Tom, I'm sorry for the loss of your friend. I second everything Steff said about how you and your description of your friend's like and your relationship about being a much needed inspiration for acceptance and living LIFE.
Bridget 

Tom,
I am sorry for the loss of your friend.  It sounds like she lived a life we all should strive for.  That being said, thank you for this.  Living a full life DESPITE lung cancer isn't something I would have ever accepted 1 year ago for my mom.  Accepting that we will likely only ever hear "Your cancer is stable" and never hear "There is no evidence of disease" has also been hard for me to except.  But hearing stories like this and meeting wonderful folks at the HOPE Summit has helped me to begin to come to acceptance.  My mom and I's daily phone conversations have turned from lengthy discussions about lung cancer to what creation did she work on or what kind of shenanigan did my dad cause.  It's a much needed break for the both of us.  I appreciate hearing how 2 tenured lung cancer survivors talked about all things "life" instead of all things "lung cancer".  So once again, thank you.  Your post put a smile on my face and solidified that it is okay to go on with life.
Take Care,
Steff

Tom,
I am sorry for the loss of your friend.  It sounds like she lived a life we all should strive for.  That being said, thank you for this.  Living a full life DESPITE lung cancer isn't something I would have ever accepted 1 year ago for my mom.  Accepting that we will likely only ever hear "Your cancer is stable" and never hear "There is no evidence of disease" has also been hard for me to except.  But hearing stories like this and meeting wonderful folks at the HOPE Summit has helped me to begin to come to acceptance.  My mom and I's daily phone conversations have turned from lengthy discussions about lung cancer to what creation did she work on or what kind of shenanigan did my dad cause.  It's a much needed break for the both of us.  I appreciate hearing how 2 tenured lung cancer survivors talked about all things "life" instead of all things "lung cancer".  So once again, thank you.  Your post put a smile on my face and solidified that it is okay to go on with life.
Take Care,
Steff

Thank you all for indulging my meltdown yesterday.  Today is a better day because I decided it would be.  The sun is out (FINALLY) and I'm alive.  I don't believe I can ask for much more than that.
 

Susan,
I often think about how things might be if the roles were reversed and I was the cancer patient, not my mom.  I always wish that I could be the one who had gotten cancer, not my mom. She has enough to deal with with all of her other medical issues and taking care of my dad.  But then I really think that my mom would probably worry even more if her only child were the one with cancer.  I couldn't even imagine having to tell my parents that I have cancer.  You are a brave woman to not only confront your battle head on, but also to try to soften the blow for your parents.  And it sounds like you are lucky to have Neil!  I have a very small family too - no siblings or children either.  It's pretty much just my parents and I (my husband isn't as supportive!).  I understand the stress that comes with a small family unit and how we try to soften the blow for any type of bad news.  I am so sorry you are having to battle this recurrence and I am as equally as sorry that you had the stress of sharing your news with your parents.  Sometimes I don't know which is worse.  
I hope that your treatment begins quickly so you can get this bout done and over with!  I am thinking of you and your family, sending hugs and awaiting to start my happy dance for you.
Take Care,
Steff

Thank you all for your thoughtful comments.  I guess, after two years, I'm still adjusting to the dreaded "new normal".  There are many aspects of this site that I enjoy, but coming here to write what is on my mind is probably the best.  My husband understands but you all really understand.  
Wishing you a happy day!

Susan,
I read your post a few days ago and it really hit me, but I didn't have the words or thoughts of how I wanted to reply since I am not the cancer survivor and don't want to make everything about me.  But I too, as a care advocate for my mom, feel the nagging thoughts in my everyday activities.  And honestly, I think you all do so much better in dealing with those nagging thoughts than I do.  I will use my mom as an example...I speak to her everyday via phone.  Yesterday happened to be the first day we did not talk about cancer, how she is feeling, upcoming appointments, etc for nearly a year.   I had decided after reading your post that I would not be the one to bring up cancer in our phone visits unless something major was going on (I really had to look at what I consider to be MAJOR because I think EVERYTHING is MAJOR!!!). I realized that I was probably putting my nagging thoughts onto her and that is the last thing she needs.  And voila, when I did not bring up cancer she did not either! So, although I cannot help with any "words of wisdom" in regard to dealing with nagging thoughts (since I totally suck at it!!!), I want to let you know that you are not alone. And I also want to say thank you...although I am sure it wasn't your intention, you helped me to realize how I can be unintentionally placing my baggage onto my mom when I really try hard not to.
I hope that those nagging thoughts lessen for you and for all survivors.
Thanks for sharing your thoughts.
Take Care,
Steff

Susan,
I read your post a few days ago and it really hit me, but I didn't have the words or thoughts of how I wanted to reply since I am not the cancer survivor and don't want to make everything about me.  But I too, as a care advocate for my mom, feel the nagging thoughts in my everyday activities.  And honestly, I think you all do so much better in dealing with those nagging thoughts than I do.  I will use my mom as an example...I speak to her everyday via phone.  Yesterday happened to be the first day we did not talk about cancer, how she is feeling, upcoming appointments, etc for nearly a year.   I had decided after reading your post that I would not be the one to bring up cancer in our phone visits unless something major was going on (I really had to look at what I consider to be MAJOR because I think EVERYTHING is MAJOR!!!). I realized that I was probably putting my nagging thoughts onto her and that is the last thing she needs.  And voila, when I did not bring up cancer she did not either! So, although I cannot help with any "words of wisdom" in regard to dealing with nagging thoughts (since I totally suck at it!!!), I want to let you know that you are not alone. And I also want to say thank you...although I am sure it wasn't your intention, you helped me to realize how I can be unintentionally placing my baggage onto my mom when I really try hard not to.
I hope that those nagging thoughts lessen for you and for all survivors.
Thanks for sharing your thoughts.
Take Care,
Steff

I think both survivors and caregivers want to avoid unlioading their baggage on each other. It's inevitable that we do that some though. One thing I love about these forums is it gives me a place I can unload some stuff without unduly alarming my spouse. I know she wants to make things better for me, but at times I just need to vent or complain or share anxieties. Here others have been through a lot of the same stuff and will understand without feeling responsible or worried. Thanks everybody for  being here!
Bridget O