Advice, Education - What do I do NOW? (pain, blood, surgery)

[Jeannette Bossard]

I just got back from a trip to Texas where my mom lives. Went with her to this Doctor there, who looked with us at the CT and PET scans of my Mom's lungs. There are spots in both lungs, an area of collapse in the left lung, and hotspots in both chest lymph nodes. He has stated 'clinical' diagnosis, because she is a heavy smoker, that it looks to be stage IV lung cancer.
Thing is, he said there was no real available cure, chemo or radiation were not options. First off Chemo, he said would maybe prolong her life a little, but cause her more sickness and she wouldn't get to enjoy whats left of her life now. She refuses surgery and even tho, he said that was not an option either, because of the location of the lymph nodes in the chest.
She refuses to talk about 'what is next'.

I've never gone through this with any one before and I'm her POA. I lost my only sister who was 54 a year ago from Cancer. Her's started out breast cancer, then it was lung cancer that took my sister's life. My sister had asthma growing up in a 600 sq foot house with THREE adult smokers, and smoking visitors.

My Mom refuses to give up these damn cigarettes, too, and will smoke around others with no guilt. She will defend the Cig to her last dying breath, and I cannot understand it. Her Doctor advised her two years ago to PUT THEM AWAY -- or this would happen.

So, Now what? I need advise and help to figure out what to do with my Mom, I am trying to sell her house in Tex and move her in with me and my family in Missouri, but I don't want her to die in our home.

The Dr quotes clinical 'book' time frame of 13 months. She has a bucket list, however, I want her to get a biopsy -- I would think one was required in order to properly diagnose 'lung cancer'?

My biggest questions is "Why isn't there HOPE, for a Cure?" I agree with her, why put her through all the sickness from chemo if it is only going to prolong her death and cause her pain and sickness before she dies anyway? My Mom hopes to get free of her home (too much work for her) and go travel to visit friends n family one last time.

Once Cancer is in the chest lymph nodes, how quickly does it go to other outside regions of the lungs? What happens to these lungs now?

I'm upset at her Medical Team, they took too long to get her these tests, and now offer NO HOPE, and have put her on the back burner for further information and biopsy options. Isn't this malpractice? Who gets to decide if a person is worth additional follow-up appointments and why would they make her wait so long?

I feel like her Medical staff have sentenced her to death.

Anyone out there know what I should expect from now til her passing?
Care to share your experience? She won't give up the smokes, and I can't
convince her now, especially if Drs are not offering a cure.

Fretting in "Missouri"

[Laura707]

My Mom was a smoker all her life and she smoked up until a week before she died. She had colon rectal cancer that had nothing to do with smoking. She refused any treatment or surgery which we felt like, prolonged her life and avoided a lot of suffering for her and gave a lot better quality of life up until the end. She lasted a lot longer that they had said she would, she showed them!

Let your Mom enjoy what time she has with no rules, no restrictions. We let Mama die at home and we found a lot of peace and comfort in that. I realize not everyone can do that but it made it so much nicer on her and us. The time we got to spend with her after her passing did a lot to help heal us and get closure and she got to die with her faithful pets and companions by her side.

Why put her through medical proceedures that will only take up valueable time and could harm/hurt her? Let her decide what she wants and respect her wished. Mama's doctor begged us to make her have that surgery and as long as Mama said "NO!" we followed her wishes, it was HER life and I hope my kids would do the same for me if I have to face anything like that in my life. That is her choice to make.

I would not change a thing we did with Mama. I even went and prearranged her funeral and told her what I had done and she approved it. She often told me she had a good life and she was ready to go with no regrets. Rather than trying to change her mind about what to do, talk to her about what she wants! Anything she want to do before it gets bad? What directives does she want to give you? What does she want who to get after she is gone? Does she want to go make her own arrangements? Just be there to support her and cherish every moment. Some of the best days I ever had with Mama was while she was dying! We shared so much, we had fun, we talked and talked and we were closer than we ever were. I hugged and kissed her every change I got but I still found when she was gone, it wasn't enough, I had needed more hugs and kisses from my Mama.

Be there for her, do what you can so you will have no regrets! I will warn you, NOTHING hurts as bad a loosing your Mom, you will always miss her. Make some great memories with the time she has left.

[Roselvr]

Jeannette, I'm glad someone moved this post from another, as you really need your own advice and if it was in another post, wouldn't benefit from everyone seeing it.

First off, I am sorry. I know what it is like to have a parent diagnosed with a fatal cancer as if you read my post in the other thread, know I lost my dad; we then lost my FIL a few weeks later to a rare cancer. There wasn't even time for a diagnosis with my FIL. He was sick right after dad died, beginning of February, they thought he had menengitis, someone mentioned cancer then sent him home. Thankfully my MIL got him a follow up and they did tests. They took a biopsy and had to send it to John Hopkins (IIRC), it took 2 weeks for the actual diagnosis which came a day before he passed.

Start here, also see my 2nd post. While the info is for breast cancer, the links still go to the main cencer pages. You can navigate to lung cancer. Next the helpful tips post after that one, that also may help you.

1st thing, see if her doctor/cancer center is online and look for the patient information release forms, the one where you get her records copied. Next, find another doctor. You will have all of her test results, this will help as they won't have to back track. Get a 2nd opinion and do it now.

I don't know if she is better off in her state or yours, you'll have to see. You do not want to take her to a small center at a local hospital and may be better with a university.

If it is correct that she does have stage IV lung cancer, the best you can do is talk it over with her and let her decide how she wants to live the rest of her time.

I understand you don't want her dying in your house, everyone feels differently on this. My dad wanted to die in his own bed and did. My mother did not agree with this. If there is no hope, you then have to figure out where she will be kept comfortable in the end and what part you will play. It's very hard when you don't live close, thankfully my dad was 7 blocks from me while my FIL was a few states away. My hubby could only do so much.

Spend as much time as you can with her and do a lot of talking. If there is anything you need to say, make sure you tell her. You may not be able to change the outcome but you can make the most of the time she has left.

Once again, I'm sorry.

[nay624]

well if your mom wont quit smoking...why get mad at the medical professionals?? your mom new the risks when the doctor told her "2 yrs ago" to quit. dont get mad at the medical team...

btw do you smoke??

[Roselvr]

From what I've read, smoking causes decreased blood flow and if there is a chance that she can be cured she should try to quit or smoke less. Talk to the doctor, only her doctor can tell you if the smoking is hurting more.

At this point it might not matter that she is still smoking. If she is dying, and smoking makes her happy, let it be. At some point she will have to stop, right now might not be the time.

My dad used to smoke, I smoke as well. When he was in the hospital for a month during his treatment he wanted a cigarette bad at one point. He used to dream of smoking. He asked for a smoke on the way home, I refused. Once he got home he found his carton & lit up though.

He eventually went into remission, but when we got the news the cancer was back we both drove home almost chain smoking. I asked the doctor if smoking mattered he told me no at that point. He said any damage was already done. After the cancer came back & he was hospitalized, the doctors used to let me bring him into the parking garage in a wheel chair to have a smoke every now and then.

In the other post I mentioned my friend who cared for her hubby with lung cancer. He stopped smoking 20 years before; the damage was already done.

My dad was a 3 pack a day smoker, the last few years it was a pack & a 1/2. When he was diagnosed he smoked a 1/2 pack but couldn't give it up as it was the only thing he had to calm his nerves. At his viewing he had a pack of smokes in his inside pocket & ended up being cremated with that pack of smokes.

[Jeannette Bossard]

Yes, my Mom's choice to smoke, is just that -- Her choice -- and I am not mad at the Doctors - a bit mad at Big Tobacco Co's for making a product that kills off its customers and innocent victims of second hand smoke.
No - thankfully I do NOT SMOKE!! Was raised in a small 600 sq ft home with three adult smokers, I had my fill - left home at 16 and never touched the stuff.

[Jeannette Bossard]

Thanks to all of you who cared enough to provide input.
I am working on forgiveness (to my Mom for causing her own death).
I guess we all have consequences for our actions. My desire now is to just take one day at a time.
She refuses any biopsy or second opinion, so technically the Doctors can't give her a professional/legal/medical diagnosis. She just wants to live out her life her way - and I guess I'm thankful she wants to move closer to me and spend time together. It is her choice not to want to die in my home for the sake of my young son.
I will respect her wishes, but I don't understand a toxic habit like this and how it 'controls' people and causes them to smoke so much that they cannot live an hour without the puff of vial toxic odor. It doesn't just affect
the smoker's body, but it also causes harm to others in range of the second hand toxins. How can our society pay thousands of dollars for a product that pollutes our air ways?

I'm also upset at how after knowing that smoking can cause cancer, why then are so many of our youth as young as 12 - SMOKING? Rebellion?

With all the money spent on a cure for Cancer, It is my prayer something is done SOON, I'm running out of relatives, who have died from some form or another of the horrid disease.

Thanks to all who provided information.

[verynicebecky]

I grew up with parents who also smoke/d. Daddy passed away 5 yrs ago to cancer. Mom has survived breast, ovarian, and pancreatic cancer, so far.

I would like to suggest a book to read that I found to be very helpful during a time when I myself thought that I was going to die awaiting a liver transplant.

Elisabeth Kubler Ross : On Death And Dying

[nay624]

hows your mom???