My mom was recently diagnose with nsclc

[bettie's-daughter]

Hi my Mom (78 y.o.) was just diagnosed with non-small cell lung cancer and we just started treatments this past week. She's had 4 radiation treatments and is back on steroids and is feeling poorly. Coupled with this dx, she also has had COPD so she is on oxygen 24/7.

She has so much indigestion/heartburn that she doesn't want to eat. (She can't afford to loose weight--when diagnosed, she was 95 lbs (July 1, 2008), we just got her back up to 108--a little O2 helped a lot, but now the steriods plus the treatments I am concerned she is going to backslide. ) Is this wahat it is going to be like for the next 7 weeks of daily treatments?

Any insight someone can give would be greatly appreaciated.

[MsC1210]

Hello and welcome to the "family"

I am so sorry you had reason to find a site like this but glad you have posted and joined us.

I cannot give you much as far as advice, but it seems as though you should mention this indigestion/heartburn to Mom's doctors. I am sure they must have something they can give herto ease that. In the meantime, if you can get her to drink Boost or Ensure to get some calories into her that will help as well as lots of water.

I am sure the others will be along soon with much more advice.

Please keep posting and know that we are here for you!

Warmly

Christine

[Patti B]

Hi and welcome to the foum. This is a great site with lots of really great people with tons of information and support.

I cannot comment personally on your questions as I have never received radiation but I wanted to welcome you and to let you know that we are here for you.

Please keep us posted on mom's progress.

Hugs - Patti B.

[SandraL]

Hello and welcome to this site. I am sorry your mom is having a tough time during treatments. You may be in for a tougher road ahead but the important thing is to get her through it. Don't worry so much about eating as drinking. Please keep us posted on how she is doing.

Sandra

[recce101]

Welcome to the group. I can fully understand your mom's problems with eating, since I went through some of that myself. At one point liquids were about all I could tolerate, and I was drinking three 350-calorie cans/bottles of Boost, Ensure, or Wal-Mart's clone along with anything else I could get down to maintain weight. For variety, you can dissolve packets of Carnation Instant Breakfast mix in 2% milk, whole milk, or soy milk. There are several flavors, all of which I found very tasty. I also consumed plenty of ice cream (no chunks that might irritate the throat) and lots of milkshakes.

The main thing right now is to pack those calories in and not worry about eating the whole range of foods that are thought of as a "balanced diet." After chemo and radiation, the eating situation should start to improve. Best wishes and Aloha,

Ned

[bettie's-daughter]

My mom has since gotten a peg tube for feeding since her esaphagus closed due to the tumor compressing it during radiaiton. After abour 4 more weeks of treatment, she was able to swallow a little. We finally finished our 33rd treatment and celebrated with an ice cream party. Ice cream sundaes for everyone.

Two days later....pneumonia, afib, dehydration. In hospital again. Finally send her home via ambulance because of her high O2 requirement. Now bleeding from vaginal area.....which started in the hospital and was assumed it was from hemoroids since she hadn't had a bm in 5 days and when it finally happened, it was difficult to pass.

She hasn't been to a gyn in years, afraid to go....edema in legs, won't get legs in stirrups. Oh yeah, high O2 requirement, how do we get her there.

It is hard to beleive that this woman, 8 months ago was still travelling by bus to my house.

Feeling overwhelmed, over tired and over stressed.

[MsC1210]

I am so sorry. You have so much going on with you Mom. I just wish I had words of wisdom or advice to help you.

Please know you and your Mom are in my thoughts and prayers and keep posting. We are all here for you.

Warm hugs

Christine

[bettie's-daughter]

I can't believe it, but Mom entered eternal life. We signed her up for palliative care on the afternoon of 10/26. Later that day, she started to spit up some unidentified stuff. That night Mom signed herself up for hospice. All her children were there as she drifted off to sleep at 5:00 am. During the day she slept, but she did respond to us, including saying I love you twice to me. Shortly after 4pm, her suffering was over, she entered into eternal life. The process was so peaceful. I had never experienced death like that. It was amazing and comforting that Mom left us this way.

I still look at the phone wanting to call her--I called her every single day at least twice, onceto say good morning and again to say good night. My 4 yr old called every night to say good night, God bless and I love you.

How could this have happened so quickly? The tumor was shrinking. I know she did not want to suffer, and I do thank God, she didn't, but I just wanted more time. Not that I left anything unsaid, for as long as I can remember I told my Mom how much I appreciated her and how glad I was that we went out to lunch each week. I would always send those mushy cards that would make both of us cry. Mom even saved them and I now have them back again. She even kept a card that I sent her with flowers back in 1980.

I am just so sad; I feel numb.

Bettie's Daughter

[MsC1210]

I am so very sorry about your Mom. Please know you and your family are in my thoughts and prayers. My sincere sympathies and condolences to you all.

With warm hugs,

Christine

[SandraL]

My heart goes out to you at this difficult time. I am so sorry about your dear mom. It is so nice to hear that you left nothing undone or unsaid. God bless and peace be with you

Sandra

[Larry's Wife]

I'm so very sorry.

Lynn

[jaminkw]

I am so sorry for your loss. Just reading the posts from your first through the last condolences give a sense of just how quickly it happened. I always say quick is good for the one who passed but very difficult for those left behind. May you find peace and comfort in family and friends in these days ahead. There are many here who share your experience so this is always a place to which you can come.

Judy in Key West

[blueeye]

I am so sorry for your loss.

Leslie

[fillise]

I'm so very sorry for your loss. I hope the peacefulness of her passing will comfort you. She is free from pain and though not with you physically, she will be a strong presence in your heart forever.

Susan

[Flyman35]

I am so sorry for your loss.

Denise

[Nick C]

I am so sorry.

Reading what you have written really hit me, just about every single thing you wrote. Because I've been there too.

I am just so sorry.

[bettie's-daughter]

I am trying so hard to cope with my Mom's death, but it seems to be getting harder not easier. My 5 year old has been acting out--cliningy and uncooperative. Today was a particlarly difficult day. I even went to Mass to try to re-group. Thought maybe God even sent me a sign since a special needs child sat next to me. I should be thankful--even when she is driving me over the edge since it could be worse. I couldn't even deal with my daughter whom I love more than anything. I told her dad he had to put her to bed. He pitched a fit, she pitched a fit since she "lost" her favorite doll due to bad behavior in dance class.

I am wondering if she is acting up because of loosing her only grandparent--whom we saw every week since she was born and every weekend (Fri, Sat and Sun) since Mom was diagnosed in July. Mom would never say it to anyone else, but I was her favorite---since we spent the most time together and my little girl she knew the best of all her grandkids again because I made that a priority--that we see and talk to her often. (She actually told me that she didn't know how she would have gotten through any of this without me.)

I don't want to do the holidays, everyone tells me I have to for my daughter's sake. I am "frozen" and can't seem to accomplish anything.

I have things of my Mom's in my trunk to donate for weeks--can't seem to walk into the hospital where she was treated to donate them--but I want to. I want to do it for my mom.

I am angry at 2 of my 3 siblings--1 when Mom first got diagnosed and was told about radiation therapy, I asked if he could possible take her for 1 or 2 treatments (over the course of 7 weeks), he suggested calling paratransit. The other who lived with my mom since I got married, destroyed her house--my mom was always proud of her home until she moved in and cluttered it up, burned holes in carpets and the kitchen floor with her cigarettes. She has "issues" including being a hoarder. She became mom's primary care giver Mon-Fri and even the notes she took about her care and meds had burn holes. Mom could wait to come to my house; we actually wanted her here--we spent time socializing in her room--not just in for medical care. There were hours that my husband and daughter sat with us talking in her room. (I was always there in her room--treating, tube feeding, chatting. I resent that my sister was mean/abrupt with her.

I am also angry that everyone is so concerned with the sister that she lived with--what is she going to do; she can't afford to live anywhere and she has a 15 yr old daughter.

My mom kept saying it must be a ral drag for me going to work early (out of my house by 4:15am) so I could take her to radiation every day. I kept reassuring her I looked at it as quality time we spent together--I truly did. Other than one week when my sister who lives out of town was visiting, I took her to all appointments--I wanted to do that for the woman who did so much for me.

Even two years ago when my husband was in ICU for 2 months in a coma and then in a long-term intensive care hospital for vent weaning, Mom offered to get a reverse mortgage on her house to pay for his bills....she was so sweet to me. Luckliy we had good insurance and I paid less for his bills than she paid for her cancer treatment and hospital stays....and he fully recovered.

I am just at my wits end. I can't stop crying...every day, several times a day---today for hours.

[SandraL]

Oh my. You have been through and continue to go through so much. My heart goes out to you. You did everything you could and then some. My heart goes out to you. Peace be with you at this difficult time. I wish I could say more but I have not been through your grief. You will find your way and I pray for your strength during this most difficult period. Please continue to come here and vent. Your words help us all.

Sandra

[Nick C]

bettie's daughter,

It hasn't been long. You aren't supposed to just be OK. Little things may be bigger because you've been through something very hard.

Family issues are often difficult, we've seen this in a lot of families here.

Spouses and children often feel the stress and it is hard for them...which makes it harder for you.

The only advice I can give you is if the world doesn't seem to be giving you a break, give it to yourself. Don't expect full recovery and normalcy from yourself. The pressure from the outside is bad enough...so when you say "I shouldn't be frustrated, it could be worse...that doesn't validate the this IS a hard time for you. And it may get harder at times. It's so soon...this was your mom.

And when "everyone says" what you should do, tell them what my mother would tell them..."go poop in your hat". Have the holiday that seems right for YOU annd your family. It won't be the same, so don't let annyone tell you you should try to make it that way.

Sorry I rambled... I just want you to know it is OK that thhis is a process, and it is OK to inform people of that.

[MsC1210]

Nick you summed this up beautifully.... I can't add a thing other than my thoughts and prayers are with you , Betties Daughter, and we will all be here for you to lean on as you navigate this difficult time.

Much love and many hugs

Christine

[jaminkw]

bette's daughter, I have two children and the relationship you had with your mom mirrors mine with my daughter and her son. She lived near us since before he was born until he was six. Even now that she is five hours away, she makes our relationship with her and with our grandson a priority. The same is not true with her brother and his children. Accept that what you had with your mother was special and different from what she had with your siblings and their children. I think you should feel free to tell them that--that they can't tell you how to feel or grieve because they weren't there for her in the way you and your family were. As far as responding to all that concern for the sister who lived with her, don't feel you have to stifle all that resentment. Just say it in the least offensive manner you can--don't expect me to feel sorry for her when she couldn't even step up to the plate and keep mom and her home the way our mother deserved while she was alive. It's just wrong that you have to deal with your grief, your daughter's acting out I'm sure out of her own grief that she is too young to articulate, your husband and whatever his issues are right now and be expected to act the way your siblings think you should AND share in the "oh poor baby" in your seemingly irresponsible sister with the fifteen year old.

Sorry for going on but I just have a really hard time with these family dynamics when a loved one is gone. It's enough to deal with the grief without all the family drama and judgment.

Just a question, did your mom have hospice? I can't remember. I know of people who have been able to get free counseling for children when hospice has been involved. It's a thought. I think your daughter could use some support you're not o.k. to offer right now. How about a school counselor. Reach out dear, there are people who will help.

Judy in Key West

[bettie's-daughter]

I can't believe that another holiday is upon us. Another occasion without my Mom. I miss her so much.I haven't been able to cry in a while...until now.

Traditionally we had our Easter dinner on Saturday and thanks to my husband, we did it again. My sister and her daughter came as well as some good friends. Every year I would get both my Mom and her sister (my favorite Aunt) an Easter egg from the candy store. Then in 2008, I got one less since my Aunt entereded eternal life and this year one less since I can't get it for my Mom. They both looked forward to their treat. I miss them both dearly.

I look back and I have so many great memories of my Mom and my Aunt; just not enough of them. The sisters were two peas in a pod. They always made me feel loved (unconditionally). I miss that. I miss my Aunt Joan calling saying this is your favorite Aunt and I would say hi Aunt Marge. She would call me a brat and we would laugh.

I still have a couple of messages my Mom left on my answering machine that I listen to so I can feel that she is still here.

When my little girl was in ER a few weeks ago, I kept thinking how my Mom would be worrying so much. Gosh if I had to tell her they sent us by ambulance to the Children's Hospital, she would be beside herself. Thankfully my little one is much better and I painted the hospital stay (3 days) as a big adventure. I think having my Mom with us so much when she was sick actually helped Kate deal with the whole hospital thing.

They gave her oxygen, just like her Nina. When they gave her an IV, she thought it was food since we used to give Nina tube feedings (it was Katie's job to tell me when the bag was empty.) When we had to start Katie on a nebulizer, she said it's jut like Nina. It was Katie's job to turn on and off the machine. In my Mom's special way she is still helping me with my daughter.

My daughter did ask if she would have to have the tubes all the time like Nina which I felt badly about but I assured her that it was just temporary until her lungs got better. Of course when Mom was diagnosed last year and Kate was 4, we told her that Nina had a boob-boo in her lungs so she did ask if she had the same boo-boo as Nina.

I was so proud of Katie in the hospital. They would come in an say they want to put the light on her finger and I would say, Katie what is that called. She would respond, pulse ox. I would then ask her what that measured and she would tell me the oxygen in her blood. I would ask what number is good and she would say 100 is the best. She would look at her monitor and report what numbers she had...she new we wanted it at least above 92.

She only cried once the entire time in the hospital when they were taking a sample from her nose witha tube--I filled up too...but I warned the nurse I would.

Well now that I am babbling I feel a little better, maybe I can finally fall asleep...it is 2:21 am.

Thanks for listening.

Beth

aka Bettie's Daughter

[MsC1210]

((((Beth))))

It's good to hear from you. I hope your little girl is doing well now.

Many hugs

Christine

[jaminkw]

Beth, I know you are still missing your mother. I remember how quickly it all went for you. And your saddness is compounded by losing your mom and your favorite Aunt. It is amazing though, isn't it, that Mom's experience was such a comfort for Katie. Her recent hospitalization was made less traumatic by virtue of the fact that the procedures were so familiar. You can almost see your Mom smiling down that she was able to help Katie. Take care of yourself and try to grieve gently.

Judy in Key West

[SandraL]

Hi Beth. Your love for your mom, aunt and your daughter shine through your words. I am glad your daughter is feeling better and that your mom helped with that in her own way. I hope your day passe gently with fond memories.

Sandra