My Mom

[BGK]

My mother has been diagnosed with lung cancer that has spread. She is getting a lung biopsy tomorrow morning to determine treatment. I do not believe surgery is an option. Radiation and chemo more likely. I am frightened out of my mind but never show any that in front of my mother or my father. She is in a lot of pain after being misdiagnosed for 3 months. My brothers are here at my parents house as well. We all live out of state. I am planning on staying long term bc I can work form here if need be. I am 35 years old and I do not want to loose my mother. We are finally have a close healthy relationship. And I want her one day to be at my wedding and to be around when I have children. I found out the diagnosis on Friday. I sit with my mom while she feels a million different emotions. And I have no idea ho wto process this for myself. I breakdown in the shower... I have great friends... they are all out of town and I don't feel like talking all that much. They all know what is going on. I just want my mom to be pain free and have a good quality of life. I hope tomorrow will begin moving forward to find some answers. Can anyone offer any advice, hope, etc... I am a very spiritual person and do everything i can to help her and my dad. Thank you! BGK

[Linda74]

I am so sorry you had to find this site. It is so difficult. there are wonderful people on this board who will be a source of comfort to you. The first few days are paralyzing. You are her cheerleader. My husband passed away three weeks ago from this dread disease. His was so far advanced when diagnosed so I don't want you to think that will be the case with your mom. I can tell you that our children have and continue to be such a source of comfort for the two of us. Crying in the shower is a good thing...I still do it...and the house is empty!!! Just take it one day at a time...pray a lot and feel God's presence in your journey.

Hugs and prayers are being sent your way...

[Larry's Wife]

Hi, BGK. You've come to the right place for support and information. I know things are tough on you all right now. Not knowing how you are going to deal with this is very stressful for everyone. But once a treatment plan is in place and you have a plan of action, you can concentrate on fighting.

If you have been reading the posts here, you know that there are several different treatment options, depending upon the diagnosis. Please come back and let us know the results of the biopsy. It will help us to help you.

Also, please take a look at the Good News section. There is a lot of hope to be found there.

Big ((((hugs)))) to you and your family.

[jaminkw]

BGK, welcome but sorry you had to find us. I agree, crying in the shower or anywhere for that matter is good. The beginning is the worst, chaotic and fraught with fear. Once you get mom's dx and a treatment plan is in place, you will start to appreciate the hope.

Keep us posted. We can help just by being there. I have often said I don't know how I would have gotten through this past year without this group.

Judy in Key West

[BGK]

Thank you everyone! Went to the doctor with my family earlier today and my mom was officially diagnosed with Stage 4 Squamous Lung Cancer. On Monday she is going to get a biopsy of her kidney to make sure that it's all the same kidney. Also, they will do a bran scan to make sure it didn't spread to her brain. Then Chemo will be assigned and it will begin. Has anyone every heard of someone in this stage 4 beating cancer or it going into remission. This is a scary time... I am trying everything I can. I know this came from smoking.. I am not at all harping on that.. but once in a while she still takes a few puffs... she had greatly cut down on it. This is something I don;t understand since I am not a smoker. But I need to get her into a support group and also she needs to learn other ways of coping with her life that are healthier. I don't want to tell her what to do, but do want to help her get as healthy as possible to begin the fight. Also has anyone ever heard that dairy is very bad for cancer patients? Sorry for all the questions and thoughts. I am in the middle of processing everything. THANK YOU THANK YOU all of you for being here.

[Flyman35]

Hi BGK. i'm sorry you had need to find us but glad that you did. This is a great site for info, support and hope.

On January 29th my husband will be a 1 year survivor from officail diagnosis of Stage 4 NCSLC Squamous cell. He also had lymph node and liver involvement. There at 1 time was something found on his kidney but it turned out to be nothing. As of the last scan in Dec 08 the tumor is still there but it continues to shrink and he has had no treatments since July 08. He is on oxygen at home after a bout with pneumonia last month for which he was hospitalized. It has been a long tough year but he is still here and able to get out on his own and do things for himself.

There is hope.

Denise

[BGK]

Denise,

Thank you for the HOPE! I really appreciate it.

Best, BGK

[recce101]

Hi, BGK, thanks for the additional information. I won't try to kid you — stage IV lung cancer is not a good thing to have, and the statistics are not very encouraging. BUT...you and your mom should keep in mind that any survival numbers you may hear are simply averages/means for a very large group of patients who received a similar diagnosis in the past, and there is a great deal of variation from one side of that group to the other. Any such numbers have little relevance for any individual patient. To bear that out, if you browse through the My Story or LC Survivors forums or read the profiles at the bottom of the messages in any of the forums, you'll find a good number of members who are still doing pretty well years after receiving their own stage IV diagnosis.

A couple of random points:

Although the squamous form of NSCLC is the one most associated with smoking, you don't absolutely know that smoking is what caused your mom's cancer. It could have been radon, genetic factors, various other pollutants, or causes that haven't yet been discovered. It's wise and good that you're not "harping" on the smoking angle, but she may be providing her own guilt trip and unnecessarily adding more stress to the situation. Of course it's best if she can stop, since smoking is believed to reduce the effectiveness of some chemos, but some people simply can't, not because they're weak, but because it can be incredibly addictive. I guess I'm one of the lucky ones, since I was able to quit smoking in my late 20s without too much difficulty — but maybe I wasn't so lucky after all, since I got stage IIIb adenocarcinoma 43 years after I quit! To complete the picture, I should say that two members of my immediate family smoke, but they know the facts, they do it in the far corner of the back yard, and I don't hassle them.

Also has anyone ever heard that dairy is very bad for cancer patients?

Well-meaning friends and relatives will give you all sorts of "information" like this, including the idea that sugar should be avoided, or that various supplements will prevent or cure cancer. There's some authoritative discussion on these issues at cancergrace.org (GRACE, Global Resource for Advancing Cancer Education), a marvelous resource headed by a medical oncologist and lung cancer expert in Seattle. Here is one quote from Dr. West:

I personally have little (and by that I mean no) enthusiasm for strict diets, for a focus on alkaline vs. acidic food, for minimal meat or dairy, or for a minimal sugar diet. I think it makes good sense to have a pretty balanced, healthy diet, but I've never seen any real evidence that a strict diet makes any difference at all, nor have I ever heard a widely known and respected cancer expert express any belief that this is a valuable approach. Many patients with cancer have a hard enough time maintaining their weight in the face of a potential change in taste on chemo, as well as possible nausea/vomiting and diminished appetite, that I advise patients to eat what they have an interest in, and ideally to follow a balanced diet without worrying about anything strict at all.

In addition, you should check with your mom's oncologist before adding any type of supplement to her diet. Some supplements may actually interfere with certain chemo treatments.

Best wishes and Aloha,

Ned

[BGK]

First thank you all for all the useful information. I find it all extremely helpful. And your kindness is incredible. The update on my mom is this: She is getting an additional biopsy on her kidney to determine that this is one cancer we are fighting. The doc is pretty sure it is but wants to make sure. In addition that are doing a brain scan to check if it spread in that direction. Then we will meet with the doc to finally get a treatment plan. Which for now i believe only includes chemo. I do not live close by to my parents.. but have taking time away from work to be with them and help get a treatment plan going. I'm feeling a million different emotions... luckily I have a fantastic puppy whose 11 months old who I brought with me. He is incredibly healing for all of us. Dogs are just amazing.

One of the hardest things that I am finding is that even though I have a fantastic support system of friends, they are all out a distance away... I find it weird that life goes on and doesn't stop. I'm not sure what I need. But it's hard to make people understand this unless they have gone through it. I find that the only person I really want to talk to is a close friend whose mom died of cancer. She gets it without me having to say a lot of words.

I don't know if what I am even writing makes any sense at all... I am a bit wiped out this evening. Again thank you all.

[Barb73]

Dear BGK,

Everyone here is a lifeline in support. This board has information, kindness, and stability, which I have hung onto for dear life many times - a genuine blessing.

Though my husband has not had the same type lung cancer as your Mom, he was diagnosed with Stage IIIB four years ago, which turned to Stage IIIB/IV in the first year following that diagnosis.

Everyone is different, and as has been pointed out by Ned, statistics are really not very relevant. I have never paid any attention to them, except to think of them as fraught with "variables."

There have been ups and downs to Bill's and my journey with this disease but mainly, we have managed to eke out a "new normal" life for the past four years.

Several chemo regimens later, we are still here appreciating each and every day. Some days are better than others. In fact, many have been very enjoyable.

Crying in the shower has been a release for me, and has been to this day. As time has gone by, it happens far less frequently, but "an old friend" nonetheless.

Bill and I gave up cigarettes ten years ago this past January, but have no guilt about having been "addicts." It was the hardest thing I ever had to do - kicking those butts. It was very difficult for Bill. He had given them up for a few years, went back, and gave them up for good ten years ago.

We are very grateful that we gave smoking up at all, and we hope that has helped Bill get through his chemos more effectively.

Please let us know how your Mom is doing with her treatments. We definitely felt much less stressed when a treatment regimen was in place, and we could concentrate on "doing something."

Keep hope,

Barbara

[BGK]

Barbara, My mom's name is Barbara. And I live in Bergen County, NJ and work in NYC. So I take it as a sign of good luck that this morning when I read the post... I saw your name and where you are from. Thank you. I feel like sometimes I am living holding on for dear life and at other times I feel like everything is normal and then I quickly remember. Thank you. I will keep posting updates. It helps me a great deal to know that others understand without me having to explain too much.

[jaminkw]

Perfect sense. That's why we are here for you. We get it, all of us.

Judy in Key West

[BGK]

So after a scary day yesterday my mom is in the hospital. Her calcium level was high ad her kidney function (left kidney) was too low. They have been give meds since last night to flush out the kidney's and pain medication. All is make her rest and feel less pain. I am happy to say that the meds are working and her kidney's are doing a lot better. A long haul.. But she is strong, and fighting her way through it. We all stand united around her. Hope remains strong. The doc said this is only a setback. We will be back on track soon.

[jaminkw]

BGK, sounds like a real ordeal for you all. Glad mom is resting comfortably. Sometimes the hospital is the best place to be until they get things under control. I am especially glad that she has a doctor with such a positive attitude. What a help that is. Keep us posted as treatment gets back on track.

Judy in Key West

[BGK]

Things have been so busy that I haven't been able to send an update till now. First off, my mom is home and in the middle of getting chemo and radiation treatments. Luckily, the doctor says she is responding above average. I happen to also be a believe in visualization, mediation, breathing exercises to calm the mind. My mom has embraced this. And at times it helps her. My parents live down in Florida and after staying a month to get her stable and in a treatment sked I had to return up north to work. What I have found is that work has been supportive (which I am thankful for).. BUT what I find is that most people really don't understand what it is I am going through. The very few are those people who have had a parent ill. I am not sure what to do... BC I do feel like I am in a somewhat alternate universe... and I want to be with my mom 24/7... yet I am fully aware of how I feel and what is happening. In addition I am seeing a cancer social worker one-to-one. What can I say to these other people.. who supposedly care about me... who just when they listen to the latest about my mom.. don't keep saying, "you should talk to someone." I feel like truthfully they should talk with someone. BC I am getting my priorities straight and trying to grow as much as I can in this situation. Sorry everyone to vent. I am having a hard time with people's opinions about something they obviously know nothing about. Hope all of you are well.

[Patti B]

Hi BK-

Welcome to the site. Sorry I missed your original postings.

I totally understand other people not getting it. Thats why we all have each other here. And please never apologize for venting - you are now part of our family and thats what good families do - help each other.

I was diagnosed as Stage 4 NSCLC and was told 12 months tops. Well, next week is my 29 month mark and I still have more chemos left available to me. There are others on this site who have far surpassed what I have. NEVER EVER give up hope and NEVER EVER listen to statistics - your mom is NOT a statistic - she is an individual!!!

Keep posting and letting us know how both you and your mom are doing. Your mom is one lucky woman to have you as her daughter!!

Hugs - Patti B.

[BGK]

Patti, THANK YOU! I promise, I will never give up. I hope your chemos are going well. And I appreciate your kindness and warmness. Keep up the good fight. Best, BGK

[SandraL]

Hi BGK. I missed your original postings as well (I think I was in the hospital at the time.) You will find that many many people do not get it...and how could they unless they have been through something similar. That is why this is such a great place to go for support and information.

I am sending lots of prayers and positive thoughts that your mom's treatment is a success.

Sandra

[jaminkw]

BGK, we all know about people who don't get it. If you know these people care about you, consider that they just don't know what to say. They say you should talk to someone because they think you should go to FL and do what you can for your mom, then come back and go on like everything is normal. Anyone who has been there personally or has had a loved one with cancer knows that isn't possible. You enter a new realm, people here call it the "new normal." I'm glad you found someone you are comfortable talking through this with, and you always have us.

Judy in Key West

[LovesLife]

I'm sorry that I too missed your post - I just want to add my welcome and say that your mom is very lucky to have you in her corner. Also, it's good that you are finding ways to express what you are feeling and not keeping it bottled up inside.

What excellent news that she is responding above average to the treatment! Way to go mom!!!

As to how people react - we have all experienced situations that make us shake our heads in wonder. I don't believe that people intend to upset us or dismiss our feelings - like you said, they just don't get it. Their lives are moving along as they always did and they really can't begin to understand what happens to lives when cancer enters the picture. They are blissfully ignorant and for their sakes, I suppose that is a good thing. For those walking the cancer walk - not so helpful. I'll keep you and your family in my prayers.

Take care,

Linda