BridgetO

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 😁 

And thank you for your service to the survivors  and caregivers on this forum

Hi Jane, 
You sure did hit the nail on the head.  The commercial coverage plans are more comprehensive than Medicare.  I'll be in the same situation after my COBRA runs out.  Ironically, the coverage standards spelled out in the Affordable Care Act, do not apply to the Federal programs.  
  If you travel or seek care out of state, then you will need the Fee for Service traditional Medicare with parts A, B & D, then you will need a supplemental to cover the copays.  If you don't mind working with in network benefits then the other option is to look at Medicare Advantage Plans.  
I have a few ideas on how to sort through the plan selection:  you could call the American Cancer Society Help Line, Cancer Recovery Foundation, Gilda's Club's Cancer Community Support Line  or  AARP is likely to be a resource too.  Worth a shot?   https://www.cancer.net/navigating-cancer-care/financial-considerations/financial-resources   
Our financial advisors have a Medicare broker on staff to help make selections as well.   The cancer clinic social worker might have some ideas as well.  Let us know what you find out, it will help a lot of us.  
Michelle 

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. 

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'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

You are entitled to a meltdown whenever you need/chose/are overcome by one! I'm glad today is a better day.
Bridget O

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

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

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

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,
Unfortunately, I still get hit right between the eyes.  Case in point, I've had a nagging congested chest condition with a "dry patch" in my throat since mid May.  My GP ordered and ENT endoscope consult followed by an MRI.  So alarm bells are ringing in my head!  Recurrence, even after long periods of NED is common.  Living with the threat is partly finding one's new normal, but the threat is always hanging around my mind and effects my day to day life.  For example, I pay close attention to medical expense and medical evacuation benefits on the travel insurance policy I now purchase for every international vacation.  And, I still have that scanziety drill for my two scheduled oncology consultations a year.
Lung cancer really is part of my life.  It is ever present in my mind.  Sometimes, I am overwhelmed by its reality.  My only solutions is to....
Stay the course.
Tom

Tom,
I'm so sorry for the loss of your dear friend. Your post is a wonderful tribute to him.
Bridget O

Almost every day, a friend on Facebook shares a story that doctors won't cure cancer because they and big pharma make too much money.  Well, guess what?  Those drugs and that surgeon saved my life and I am eternally grateful for the time I have.  Without either of those, I likely wouldn't be here today.  I have looked into other options, but certainly not in place of but instead in conjunction with my treatment.  Part of being your own advocate is researching treatment and determining what is snake oil and what's real.

I have in the past helped a number of people with SS disability applications, or SSI disability .(Social Security is based on what you paid in to the system; SSI is available if you haven't paid enough into the system but have very limited income and resources--the disability standard for both programs is essentially the same) Tom's advice is excellent. Two things I'd like to add. First, submit the most complete documentation and information  you can at the initial application. If you have a case manager through any agency, ask for their help with this, or whether they can refer you to any other local agency that can help at the initial application stage. Second, the Socail Security Administration will probably send a questionnaire about your abilities/disabilitie to a person you name in your application. You need to be sure that this person knows that this is coming and is also aware of the disability standards (as Tom says in #3 that you should be). It can be difficult for some people to fill these out for others because they either want to maximize the extent of the disabilty to be helpful  (as in "she can't do anything for herself and requires total care") or minimize it because they are in denial or trying to be optiimistic. (as in  " she is a wonderful person who tries to do everything for herself and only needs a little help"). It's important for the person filling out the form to be detailed and realistic and as Tom says- be sure to include treatment side effects, especially when treatment is long-term.
Social Security is a really convoluted system, so if you can find someone to help who has experience with it, so much the better. And in any case, be sure to meet any appea deadlines and don't give up!