Need some advice & support...

[sandmangirl]

Hello everyone, I'm brand new to the message board. I'd like to tell my story and get some advice on what I can do to help my mom.

My mom is 57 years old. She was a smoker for about 10 years, but quit 20 years ago. My dad is still a smoker and smokes in the house. I live 2 1/2 hours from my parents and my younger sister lives 1 1/2 hours from them.

Mom started coughing back in May and ended up breaking a rib - it broke off of her backbone and an MRI was performed to tell the exact location so that it could be cemeted back in place. A mass on her right lung showed up on the MRI. After another MRI, a CT scan, a stay in the hospital, a biopsy, brain scan, bone scan, etc. she was diagnosed with stage IV lung cancer on 7/6/06. At that time, she had two egg sized masses on her right lung, an egg size mass in her back below her kidney, a small mass on her spine, and three small masses on her brain.

She had 2 1/2 weeks of radiation on her brain and the mass on her spine (because it was causing pain). She was instantly weak and too nauseous to keep anything down. She lost a lot of weight. Her doctor decided to give her two weeks off before starting chemo because she was too weak. He gave her something to increase her appetite.

I have been very out of the loop on her treatment as I just gave birth to her first grandchild last Sunday, 8/6/06. I was restricted from traveling so I haven't been able to help her as much as I would like. She didn't want me to come anyway. I have been sending (making) my sister go help - clean house, etc. My sister is unfortunately very emotionially immature and has had a harder time dealing with this than me. She was in denial until very recently.

Luckily, I have an aunt and uncle (who are both retired from the medical field) who have been coming into town to help out - take her to appts. etc. My Dad has been mainly in charge of her care and has not been able to work a full work week. He is a truck driver and doesn't get paid if he doesn't work. Mom is on disability at her work right now, but hasn't received a paycheck for weeks. I am very worried about their financial state.

Here is my main problem right now that I really need some help with...my mom went back to the doctor today and they have delayed her chemo for two more weeks. The doctor says she is still too weak and we all fear that she'll never get to start it. The doctor was so optimistic before and now says there is only a 1 in 3 chance the chemo will help. I feel like his change in attitude is directly related to mom's attitude.

My sister, father, and I all feel that my mom's weakened state is her own doing. She won't walk and pushes herself around in a wheelchair. Her legs have lost all muscle. She barely gets out of bed and won't even go to the bathroom, which is right beside her bedroom. She is using a bedpan on a stool and makes my dad help her every time. She sleeps all the time. She can't keep any food down without medication and we feel this is anxiety. We feel like she has done this to herself - there's no real reason for her to be this bad so soon. My dad tells her that she needs to get out of bed and walk around and get some exercise, etc. but she won't listen. If I had been able to go see her more often in these last few weeks, I think I would have been able to help her and maybe she wouldn't be in the state she's in. The doctor told her today that she needed to walk and stop pushing herself around in that stinkin' wheelchair.

I'm so mad that she has allowed herself to deteriorate in this way. Is this wrong of me to think this? She started out so positive and swore she was going to get better because she wanted to watch my daughter grow up. She's lost that and I don't know when it happened. I call her but she won't answer the phone most of the time. When she does, she won't talk longer than 5 minutes because she's tired or she needs to go throw up. I think she's depressed.

I know so little about her illness and treatment - I don't know what medicines she's on - nothing. I ask questions, but her response is I don't know. I get some information from dad, but very little. I know she is receiving excellent medical care - her doctors are part of the University of Virginia Cancer Center and my aunt and uncle who have been helping were pleased with her doctors and told me they didn't feel like she needed a second opinion.

I haven't sat down with mom and expressed my concerns due to my daughter's recent birth. My emotional state is very fragile right now. We took the baby to see my parents yesterday. I tried not to focus on how poor mom looked. Her hair is gone, her complexion is poor and her legs have withered away. I just didn't expect this to happen so quickly.

Please, what can I say to her to help her change her attitude? I feel helpless because I don't live close and can't go stay with her due to the baby. I would be there if I could. I also worried about my dad. As I mentioned before, he's a smoker and he has high blood pressure. He has sleep apnea but is not using his machine because he can't hear mom calling for him. He also has his elderly mother to take care of as well and I'm so afraid this stress will cause him to crack.

I'm sorry that this post is so long, but wanted to get everything out. Thanks for letting me vent and I appreciate any advice you can give.

[tnmynatt]

First of all, welcome to this board. I hate that you needed to find us, but it is a great place for support, understanding and information about LC.

This is a lot for me to process. Her current physical condition could be physical or mental or a combination of both. Cancer is very unpredictable sometimes.

If it was me and the LC is NSCLC, I would ask the doctor about trying Tarceva. It has done remarkable things for patients that have a gene mutation. It's possible that your mom may have the gene mutation. Usually, the side-effects from Tarceva are a lot less harsh than "regular" chemo.

Not sure I helped much. I can understand your helplessness. My MIL was being treated for pancreatic cancer and they did not want us to visit and were pretty sketchy about treatment, her condition, etc. They were 14 hours away. It was very frustrating.

Anyway, I hope you and your baby are doing well and that you will be up to visiting them soon. I will be praying for understanding, words of wisdom and direction in this situation. Take care.

[kamataca]

Of course you are angry! What is happening to you right now is so horribly unfair. You should be celebrating the birth of your child, and having special time with you mom, and instead you are all caught up in batteling this beast of cancer.

We talk a lot about anger here on the board, it seems, especially early on in the journey. Please be as gentle with you mom as possible...most likely she is doing the best she can, trying to keep her head above water emotionally and physically. I know I used to get mad at my mom, b/c I didn't think she was fighting this fight the way I thought she should be. The truth is, she was doing her best, and she still is.

You have a right to be angry...at cancer...at the situation...at how hard it is to watch someone you love suffer, and not be able to fix that...but those don't have a face. You can certainly try to urge your mom to do more. Just love her through all of this.

I'm so sorry that you had to find us, but this is really a good place to vent your feelings, frustrations, etc. in a safe environment. I know I've cut loose many a rant here!

And give that sweet baby a snuggle for us. We love babies here!

Kelly

[Littlegirl]

Sandmangirl,

I'm so sorry to hear about the problems you are having with your mom. I know it is also stressful with a new baby and that this should be a joyous time for you. And Kelly is right, you should be angry with everything you have to deal with but please try to be patient with your mom. It may be depression keeping her from reaching her full potential but it could also be the cancer or the treatments she has had. Since you are not able to make it to her appointments you should see if your mom will sign a waiver with her doc so you can talk to him directly. Then you can talk to him directly to discuss her condition and find out what meds she is on. Is she on anti-depressants? Maybe they would help with her condition.

Best of luck!

Karen

[Linda661]

First of all, welcome here and many congrats on the recent birth of your little girl.

It sounds like your best source of immediate information on your mom is gonna' come from your aunt and uncle -- what's their take on your mom's situation? Since they have been going to the appointments and have the medical background, they should be able to help you understand your mom's immediate situation, what medications she's on, what is disease vs. what is mom on what she can/can't do, and fill you in on how your dad is coping with the situation. That kind of knowledge will help you bunches in forming exactly what you might be able to do to help. And there will be ways you can help once you understand the situation better, such as talking with community resources to perhaps get more help in to caregive so your dad can work, etc. It would be a plus if your mom would give you permission to talk with the doctors as well --

You have a lot to deal with right now and understand that your anger and frustration is perfectly natural. That said, IMO, it's gonna' be important for you to try to not hold on to blaming your mom for what she is or is not doing: I've been there and my mom did the same sorts of things -- I swore she could have done more at times.....but, it's her personal journey, she's scared and alone in her skin, her dx is really unpredictable, and I knew she was coping as best as she could. That has to become enough inside of you somehow -- the next thing is understanding that whatever you can give in your support is going to be enough as well. Plus, don't forget to come here often as you can and just vent away and ask questions -- it will really help.

Can her disease/meds/treatments be causing all that you're seeing in spite of your mom's best efforts? YES. Is it? We can't really answer that -- this journey is highly individual. All you can do is love, encourage & support her, you can't walk for her. You can advocate with her doctors to be sure that they are aware of what symptoms she is having and whether she has the proper medications to help her (for example, is she on any antidepressants?). In the meantime, knowledge is power with this so becoming more informed is the next step to dealing with that nagging feeling of helplessness.

Hope this helps,

Linda

[marym]

HI,

I'm so sorry you have need of the board, but I hope they'll be some answers, here. First, I would say, you need to take care of yourself and your family. No one will be better off if you forego this.

Then you need to decide who should have the interaction with the doctor, other than your mother and father. You can sign for HIPPA, so you can discuss anything - but perhaps the relatives who were formerly in medicine would be a better choice.

Now as far as her condition - I have heard that WBR (if that's what she received) is pretty tiring. So it is possible that she is so tired that she needs assistance. You might want to see if you can arrange for some part time help that would assist your mother in getting better. You can ask at the hospital if they have a social worker whom you could speak to. It might be easier to have someone external to the family pushing her a little.

I know when I was first diagnosed, I didn't have chemo until almost 4 months afterwards, due to other problems. The most important thing is to get her fighting! It's so easy to get depressed.

I would also suggest that she be put on a mood elevator - my first radiation doctor put me on lexapro and I think it really helped a lot. Especially in the beginning when you have so much to deal with. Anyway, my subsequent doctors also think the lexapro is warranted - and said all people in my situation, if they can should be put on something like this.

I hope my two cents might give you some ideas - please do take care of yourself.

Mary

[trish2418]

First things first -- congratulations on the birth of your baby! I hope mother and baby are both doing fine. Remember, your baby comes first now and it may be best if you leave mom's caretaking to other family members.

Regarding your mom, you've already gotten such good advice that there's not much that I can add. Just know that your mom and your entire family are in my prayers.

Trish

[sandmangirl]

Thank you all so much for your advice and support. Thank you also for the congrats for my new daughter. She is such a good baby and we are so in love with her.

That's a good idea about mom signing a waiver so I can talk directly to her doctor, I will suggest this. I did leave out that she does have a physical therapist and a nurse coming several times a week to help her, which confuses me even more on why she has withered away so quickly. She was taking Zoloft, but I think dad told me they took her off of it - that may or may not be the case. I'll ask about this.

I'm going to talk to both mom and dad tonight. I will use the advice I was given here and hopefully I can be of some help to her. I feel so much better to hear that I'm not alone in my struggle to not be angry at her because I feel like she's not doing enough to stay well. I will try to keep my mind clear of this and just be supportive of her. I can't imagine how scared she must be.

[ma's kid]

Oh, congrats on your new baby! I don't have anything to add to the wonderful advice you have already been given but did want to offer my prayers for you and your family.

One day at a time, ok..and if that doesn't work..then a second at a time.

Remember, we are here for whatever it is you may need, so please ask.

Blessings,

Libby

[Linda661]

Hang in there sweetie, we're here to help as much as we can via a computer screen.

Hugs,

Linda

[ztweb]

Welcome to the boards. I am so sorry that you need to be here in the first place, but I want you to know you have come to a wonderful place.

God bless you on the birth of your new baby. What an amazing time, and it is heartbreaking to read that at this joyous time of new life, you have such a horrible disease tainting your days.

I agree with Katie in that what can really help at this stage is to educate yourself about everything that deals with your mom's cancer. It is such an invasive disease, it can do so much more than we would ever know as non-cancer people.

I would suggest you also realize the limits you have. YOu will do your very best, I am sure. Stay strong and pray - if you are in to that. You can count on my prayers.

God bless!

Jen

[ErinC1973]

Welcome, and congrats on the birth of your daughter. I'm so sorry that such a wonderful event has to be overshadowed by your mom's health complications. I can relate; I lost my mom three weeks before giving birth to my son in March.

Having done the lung cancer thing with my dad back in 1999, and then with my mom beginning in 2004, I can say that both the disease and the treatment just zap the body, mind and spirit. I honestly don't know how anyone can go through all of it without some sort of psychological support, and meds. My mom, bless her heart, had SO many health problems along with the lung cancer, I just don't know how she got out of bed most days. And my dad, when he was diagnosed back in 1999, statistics were a LOT worse than they are now, and his treatment really WAS worse than the disease, so looking back on it, I don't blame him for losing his will to fight. I really don't.

When he died, I never wanted to hear about LC again. And then my mom was diagnosed. It was five years later, and coming back, I was truly amazed at how much statistics had improved, and how many people were surviving LONG TERM with stage IIIB and IV in just five years. Both my parents were diagnosed with stage IIIB, and my mom was offered a lot different treatment and hope than my dad.

What I learned in being my mom's caregiver, through her psychologist at her cancer center, is that I coudldn't MAKE my mom do anything she just didn't want to do. It was kind of like smoking; back when I tried to force her to quit, it just made her balk more. She did amazingly well with all of her treatment, but she did have her down days, and I know darned well she was depressed. Who wouldn't be??? She was lucky to have the psychologist at the cancer center to talk to, and she did occasionally open up to me, but I'm sure she often felt very scared and very alone.

I agree that you need to be kept aware of more details of your mom's treatment. She should not be violently ill all of the time, or in pain, or depressed. Make sure you speak to her doctors. I know how overwhelming it is when you are trying to bring a new life into the world. It really just isn't fair. My son is 5 months old already, my mom has been gone 6 months, and I feel my pregnancy, his birth and the recent months have been just a foggy blur.

Good luck to you, and I hope things improve quickly for your mom.