Just diagnosed. Mom is in stage four!!!

didda566 · March 2006

My mom is quiet, gentle and unassuming. Not wanting anyone to have to worry about her, she left her breast cancer to grow, until it mestasized. The doctors finally caught it when she broke her leg.
I don't know numbers, but it is in her lungs and her bones. One of the oncologists suggested she has two years to live.
She is determined to beat it, but that is her personality. She accepts what the doctors say, but asks nothing. She will just go along with treatment.
I want to help, and I need to understand.
Next week she has a MUGA scan, another ultrasound to check for blood clots (from the break), chemo and will go on some pills. because hers is hormone receptive (does that make sense?) I am assuming that it will be tamoxiferon.
Dad is taking this extremely rough. Maybe because he should have caught on and got her to the doctors, or maybe just because she is the glue that holds my side of the family together.
What questions should I be asking the doctors? They have said that it is too late to do a masectomy.

KariLynn · April 2006

Sorry your mom is going through this.

The purpose of a masectomy is to get all of the cancer befofe it spreads - since it already has there's no need. It sounds like her cancer is er+ so it feeds on estrogen - they will give the hormones to her to stop the body's natural estrogen production and make sure it doesn't attach to the BC and feed it.

The MUGA scan is a test that will see if her heart is strong enough to take the chemo. It's an easy test to have.

I'm stage IV with bone mets and my onc also told me when I asked that two years is the average life span for people with mets (any mets) but the treatments keep getting better so I have decided not to acceot that!!

Take care of yourself - this is hard on the ones who love us. (I had scans this week and got results yesterday - called my sister to give her the good news and she told me she was glad I called as she was getting ready to lose her lunch! I got BC and she gained weight and got high blood pressure - go figure!)

csp · April 2006

Hugs to you and Mom,
remember that many woman will tell you that stats are not a reflection of how each person will respond to treatment.
So if she is ready to fight make sure her Doctor is on the same page.
There are many women on this site with mets and living beyond the stats!!!
Sending hope to you and Mom,
Carrie

didda566 · April 2006

KariLynn,
Your story is a good one. I am so glad I found this site, as I need concrete reasons to stay smiling.
Lately, my mind wanders. I want to be as supportive as I can, but don't want to step on my Dad's toes. He is having a hard time understanding and absorbing all of this, and I am not sure if I would be a help to him or not.
And of course, although I wouldn't tell Mom this, my mind is preoccupied with what would happen if she doesn't beat this. All of a sudden, two children doesn't seem like enough. Maybe we should have just one more. Wouldn't a baby give Mom added incentive to stay optimistic? It isn't like we didn't think of another before Mom got sick.
It is amazing how many ideas go through my mind now that Mom has been diagnosed. I don't want to lose her. She is so important to me!!!!
What helped you, with regards to your family?

KariLynn · April 2006

At the same time I was diagnosed my dad was fighting kidney and prostate cancer so mom was pretty busy there. My sister went to some appointments with us (DH had gone to all of them.) She also pushed me to go to MD Anderson for a second opinion before treatment started so we would feel comfortable with it.

The best thing my sisters did (and one BIL) was to take my husband out and get him drunk!! He was able to talk about what was going on and let off steam - he didn't eat for about a week when we were first going through this and dropped about 10 lbs. I think it helped for him to air out his feelings and I was pretty worried about him so was glad he had that. I don't know if you should take your dad out and get him drunk (ha!) but it might help your mom if you spent some time with him and gave him a chance to talk about how you can help. Does he fish?? You could do that - it's easier to talk when you have something else to focus on too.

My family has also really helped with taking care of the kids but I doubt your mom needs help with that! If she gets chemo, she'll need help with things like laundry and grocery shopping. You might also volunteer to take her to some treatments. There's a lot to be done and I doubt your dad will feel put out if you are trying to help, you can always tell him to let you know if you're doing too much.

The only thing my family did that annoyed me (but it was kind of cute...) was they would always be here just staring at me as if I was going to disappear if they looked away. I shamed them out of that behavior pretty quickly because it was slightly annoying! Spend time with your mom, don't be afraid to talk about how scared you are - it's not like you'll be reminding her of something she's forgotten, and don't fear the worst. She could have many years left and it would be a shame if you were too afraid to enjoy them!

On the baby - that needs to be something you want in your life - I don't know if it would help your mom or not. I love mine but when I look at them I am sometimes saddened thinking I won't see them grow up - then I get over it and think I will beat this. If you were going to have a baby anyway, do it. If you're trying to give your mom a reason to live, I would think having a caring daughter such as yourself and the two grand-kids she already has would be enough! Book a cruise instead for nine months from now - something to look forward to that you won't have to put through college!!!

Take care and good luck,

Kari

didda566 · April 2006

Well, they did the Muga scan on Mom and an ultrasound to see if she has a blood clot causing the pain in her leg. She got a two hour bone strenghtening treatment and is now waiting for a surgeon to insert her port, as her veins are too small for the arm something or other.
She will be getting chemo once every three weeks.
Adriamycin is one of the chemo's. There is one other as well as two anti-nausea drugs. She will also be getting tamoxifen
I got her a singing and dancing bunny to annoy (and entertain her!)
I am so scared.

KariLynn · April 2006

The port will make everything so much easier for your mom. Just one stick and they always hit the right spot!

Don't forget to take care of yourself - you deserve a dancing bunny too!!

didda566 · April 2006

No I cannot get a dancing bunny. The kids would hog it! and the cat would maul it!
I have my husband to listen, hold and just be there for me. I am also worried about dad. His one and only is going through this, and he won't talk about it. On the bright side, he talks about how great mom is doing, hauls her for every appointment and even dropped over to my house today to visit the kids. My Mother-in-law was surprised (she babysits for us!)
Oh, and about the bunny. It does the chicken dance. Only my parents could truly appreciate that! It will be added to their already amazing singing, dancing animals they have. Dad keeps buying new ones. Unfortunately, some, like the fish on the wall, scare the jimminies out of my (almost) three year old! Birthday cake this week!

csp · April 2006

Happy Birthday to your 3 yr old !!
It sounds like Mom will be getting A/C Adriamycin ,cytoxin
and tamoxifen, my sister had A/C and taxotere. THere is a cream I wish I could think of the name of it that will numb the port site so she will not even feel the stick but she has to ask for it as I think you put it on a couple of hrs. before the infusion.

My sister loved her port they can also do blood draws from it . Tell Mom to drink lots of water the day before and day of her treatment to help flush the drugs out of her kidneys and bladder and light meal day of infusion.
tell her to take her anti- nausea meds even if she is not feeling queasy for at least 3 days after treatment as it is hard to get the nausea under control once it starts.
here are some good things to have on hand:

a bag to keep paper work, magazines or books bottled water to take to treatments .

Senacot-S as the anti- nausea can cause constipation

biotine mouth wash and tooth paste some of the meds cause
their mouths to become sore ( you can get this at Walmarts or the drug store)
hope this helps
Hugs to you and Mom,
Carrie

didda566 · April 2006

Thanks CSP. Mom has the bag already, filled with a novel (I recommended from her shelf), her forms and papers. I will add the others for her.
It will be a month on Friday since she broke her leg and admitted she had the lesion. The tests are done, but we are waiting to start treatment. She still needs her port.
I just wish they would hurry up!

didda566 · April 2006

What does DCIS stand for?

KariLynn · April 2006

ductal carcinoma in situ - is considered stage 0. If you have to start this crap at all, that would be the place to start but it really doesn't seem to save the women who have it from the harsh treatments.

didda566 · April 2006

Mom goes for her port tomorrow. She now has a blood clot in her (broken) leg. She is being treated for that as well.
Her first Chemo is on Monday. We have no idea how long it will last, what side effects she will have or anything.
I don't even know if this blood clot will slow down the chemo.
We're glad it's starting.
It will be difficult for Mom. Being on PEI, everyone knows everyone. I was over tonight (with cake for Matt's third birthday - have to bring the party to her!) and she had a visitor. It was a lady in her Women's Institute group who's brother-in-law was at the Cancer Treatment Center in Charlottetown and brought home the news that Mom was there.
So everyone around knows now.
I convinced Mom to tell my 14 year old nephew. He lives with her and I just knew that when it got through the community, she would regret him having to hear it through rumors.
So I am rambling. Happy that on Monday it starts, sad that she has to go through it. Nervous about what it all entails.
But we will continue smiling. As Mom says, "Buying shampoo is going to less expensive than ever!" She is so optimistic!

KariLynn · April 2006

I hope your mom's port placement goes well tomorrow and you're able to enjoy the weekend!

cowgirl · April 2006

I am praying for you and your mom!

didda566 · April 2006

It went well. The port is in and she had been given her third set of pills. Seems the two anti-nausea are oral. She also has another, very expensive one. Not sure what it is for, but they gave it free to her as the companies give them freebies to pass out???
She goes for more blood work on Monday and possibly the chemo?
She will go once every three weeks.
Thanks everyone for the info. I have been passing it on to Mom. She is looking forward to logging on herself when she can get back to her computer!

cowgirl · April 2006

The cream is EmLa it takes an extra thirty minutes. So remember that if you ever need it. It is used for any kind of painful procedure on the skin.

Sounds like she is on her way with treatment, beginning is hard but at least she is being treated!

KariLynn · April 2006

I'm glad it went well. My port annoyed me for quite awhile after it was in - was kind of tight - but it get better eventually. Just an FYI in case it's bugging her.

didda566 · April 2006

I am exhausted. We had a three year old party! From toy golf clubs, to a toy laptop and a bug catcher, what a day!
Then I called Mom and filled her in. She cannot climb my steps, so she wasn't able to be here.
She is having problems sleeping now. She is tired of sleeping on her back and is afraid the port may hurt, or that she may knock it out if she sleeps on her belly. The side is out of the question because of her leg.
Her leg is hurting right now because she had a bum wheel chair on Friday. As she said, "all those darn smokers outside sitting in front of the hospital on the good ones!"
She ended up having to hold up her foot for the duration of the visit.
My husband's aunt phoned tonight, inquiring about Mom. Since I hadn't spoken to her, I couldn't believe she knew about it. She had heard it from her hairdresser, who is also my Mother-in-Law's hairdresser. So I guess it is true that you tell your hairdresser everything!!!
It can be tough living in a place with less than 200,000 people, eh?

KariLynn · April 2006

I sleep on the side the port is on but it took me awhile to feel like that would be ok. I think they're in there pretty good and should stay put even if she sleeps on it.

The port is annoying to get used to, but it will be so handy that she'll learn to love it!

Kids birthdays are so fun - I hope you enjoyed it!

cowgirl · April 2006

I am sure you are exhausted, Kari and Carrie know a lot more about ports than I do. In my town you can stay home 1/2 day without everyone finding out, our town is 5000 people.

Let her see pictures it will help her feel a part of the party!

didda566 · April 2006

I am worried tonight as Mom goes in tomorrow. She has been in my thoughts all day.
Mom's community is about a fifth of PEI (upper middle of Queens County), and everyone knows everything!

cowgirl · April 2006

Somehow beginning helps a patient, but it is really rough on the family. I will be praying for her and you! Vent all you need to here it is better than therapy!

KariLynn · April 2006

Do you live in the same town as your mom and the hospital?? If so you should drop by and see how she's doing then sneak in and clean her house. She won't feel like doing that for a long time!

I hope everything goes well!
Kari

didda566 · April 2006

Mom went through it without any problems.
Mom comes in from the country for her chemo. I live in Charlottetown.
My sister lives with her and Dad, so she is on top of the house cleaning and such.
I am mainly entertainment, which is what she can use. My sister can be a bit of a depressing soul. So while she cannot get onto the computer so we can message each other, I call and just get her laughing.
I am trying to be the rock that she needs. I want her to kick this thing in the ass and send it packing.
She goes again on May 1st. I will be there beside her for the one hour chemo treatment.
My God, you on't really know how much you need your Mom still until something comes and shows you how precious life really is!
Thanks for being here for me and my ravings!

csp · April 2006

Rant and vent all you want , I know I did on a regular bases when my sister was just DX'd and going through treatments and I still do once in awhile to keep myself in pratice lol.Keep us posted how she is doing and you too.
It is hard on us family members in too.
Here's to kickin Ass !

hugs,
Carrie

KariLynn · April 2006

I'm glad it went well! I'm sure your mom appreciates anything you can do to help. You might send cards to you mom for days you can't get there - I love to get real mail (not bills!) Send a funny one to your dad every now and then too - this is as hard on him as it is on your mom - I think it's harder to see people we love in pain than to be in pain ourselves.

Be sure and take some time for yourself and do fun things with the kids - this is a long process and you need to pace yourself or you'll burn out and your mom would not want that.

Take care,
Kari

cowgirl · April 2006

You and your mom will get so close during this time, enjoy it! I cherish being that close to my mom, I learned so much about her. She was so much stronger than I ever realised, and yet at the same time frail.

didda566 · April 2006

Does it ever stop? Mom told me today that we got the call from my Grandmother's nursing home. Her health is in decline and would someone please come over and hold her hand.
Dad went first, then my uncle and then me.
She is a week away from 98 and has, you guessed it, cancer. She has a lump removed from her left armpit in the late eighties. It came back about five years ago and it has spread into her respiratory system.
She is wasting away to nothing. And of course, Dad is going through more again.
Mind you, nobody minds seeing a 98 year old go. She has lived a great long life, in her own house until she was 92.
But still, add this onto what the family is already dealing with and you have even more than too much.
As for Mom... She almost seems disappointed that she hasn't had a side effect!! She says that she was waiting for the diarrhea, the nausea and hair loss.
I mentionned that I heard here that the hair loss more often occurs after the second treatment.
My Grandmother, by the way, just became a great great grandmother. Imagine, five generations!!!
Oh joy, oh bliss. My class has a bake sale tomorrow to raise money for Easter Seals. It is a charity for children with disabilities. I made the Rick Krispie squares when I got home tonight from Grammy's.
Long week-end coming up. And lots and lots of chocolate!!!

cowgirl · April 2006

All I can tell you is we all go through times when you think your world is falling apart. My world fell apart differently, but I still got through it. You just take it one moment at a time, one second at a time if you have to.

Just as point of reference I have three kids, I had more than one fall apart before my second surgery. So I decided to homeschool my dyslexic son about 1 week before my surgery. I really didn't appreciate the timing of the situation but you know it was past time. You just look at what you have to do, not what looks like a good life right now. You just focus on what you have to do. I lost a bc sister in January, she was so special. Then another passed in February, it doesn't even seem real at times. But I know it is, so just know that God is in control.

One moment at a time, one second at a time, he will provide you strength. You are strong or he wouldn't have given you this journey! Chocolate and prayer really help me a lot!

I am praying for you! And vent away! I vent often, never fear I need to vent in order to get through things. Somewhere is my vent about the kids and my losses, I would try the somewhere I dont have to be strong thread.

csp · April 2006

98 or 108 all that they mean to us losing a loved one is hard.
It is about day 15 after the first treatment that the hair loss begins. I will tell you that my sister in law had no hair loss and she was on butt kick chemo, go figure?

Don't forget to try and unplug for you once in awhile,
take back what you can from the beast, recharge.

Love and hugs to you and your family while you all go throught this dificult time.

Carrie

Just diagnosed. Mom is in stage four!!!

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