devastating news im so sad/worried/anxious everything

[loveher]

hi everyone
this is Sue. im eighteen, my mom has had her2 breast cancer for more than half of my life. i cant even write the details right now, please look at my first post.

My moms had mets on her vertebre and now my dad has just told me that her doctor said her backbone is gonna crack eventually and it's just a matter of time. I AM SO TERRIFIED. when it happens shes not gonna be able to move. it all happened last year when she had mets on her back but the doctor ignored her pain and kept giving her morphine
it makes me so mad to think that this could have been avoided
how is it that she may die from this instead of actual breast cancer
im just so distraught right now, my heart just aches with pain
i'm not gonna be able to sleep tonight

please can you guys pray for her

on top of that my dad has a history of being unfaithfull and im away at college most of the time. what if it happens while im away, what if i dont even get to say goodbye

i love my mom so much, it hurts so bad, im not sad that shes gonna pass eventually im sad she's gonna be in so much pain. she's already sufferred so much.

i feel like i have no support, just you guys

[Mary Jo]

Dear Sue,

I am so sorry for what your mom is having to go through and for what you and your family are having to go through too. Yes, I will pray for your mom and ask God to please give her comfort and peace. I truly wish I could do more.

Please know I care and will continue to pray for your mom's comfort and for you also.

My prayers surround you Sue.

Mary Jo

[loveher]

now im just crying and my throats just burning. ive had a really emotional summer already this is just too much. i wish i didnt know. im gonna ask the doctor to comfirm eventually, im just too scarred to do it.
i have virtually no family in america. i miss my aunt and my grandma so much, they would make this much easier

[DanaRT]

Hi Sue,

I am so sorry you have had to endure so much and at such a young age.
Your mother is very lucky to have such a loving daughter.
An extra prayer goes out to you and your mom.
Please take comfort in knowing so many people care.

Dana

[goops]

I am so sorry that your mother and family are going through this, I will remember all of you in my prayers.

[DanaRT]

I wish I could reach through my montior and give you a big warm hug.

Love,
Dana

[Barbara H.]

Hi Sue,
My thoughts and prayers go out to you and your mom. Try to spend some quality time with your mom when you are home. That will mean so much to her. If she is able, ask her if she could write a journal about little events or memories in her life that you will always keep with you. She could even write about experiences with you when you were little.

My mother just turned 87 last Friday and my father is turning 90 in August. I am actually traveling to Michigan to celebrate his birthday. I have letters from my parents, but I don't have a journal. I am going to ask my husband to videotape some stories that she has told me through the years.

I also have bone mets and am currently on the Herceptin MCC DM1 trial. This trial has really helped me. Maybe you could go to her next appointment and ask what trials or options are available for her. She could also seek a second opinion. My heart does go out to you. My greatest concern is for my children. My youngest is 21 and was in sixth grade when I was first diagnosed. My middle daughter has autism and I feel as if I need to be here for her. My oldest daughter was a freshman in college and really was completely distraught when I was first diagnosed. Then two months before her wedding in 2004 I developed mets everywhere including in my brain. I'm still here.

I can certainly relate to how upset you are. Try to help your mom find some options if you can. In the meantime I send my thoughts, prayers and best wishes your way.

Barbara H.

[eric]

Sue, my heart goes out to you. I didn't read the other posts so I apologize if I'm being reduntant but you (or someone with you) may want to call your mothers doctor to discuss pain management. I can only imagine how helpless you must feel bu, know that we are here to listen and support you.

Eric

[TriciaK]

Dear Sue, My heart aches for you! You are so young to be going through this. You have done a good thing by putting a thread on this website. There are so many caring and experienced people here who will be here for you and your mom. Two things come to my mind: Can you believe that your dad is telling it like it is? His words seem really harsh to me. Can you talk to your mom about this and tell her you really need to know the truth? If you could go with her to her oncologist you could get more information, and it would probably help your mom to have you there. I had mets to my spine (two vertebra) 18 years ago and I am still here, so you really need to find out more facts about what is going on. Your mom needs your love and empathy. SHe may have a lot of the same fears you do, and talking it over together can be so helpful. Even under the worst circumstances, your mom can have help from hospice. Their main consideration is to help people, both the patient and the family, and they do all they can to alieviate pain for the patient and help the family to know what is going on and what to do for the person. Please
keep in touch here and let us know how we can help. Hugs, Tricia

[Bill]

Sweet Sue, I wish I could be there in person for you. You and your Mom will be in my thoughts and prayers. Has your Mom received any bone-strengther? Like Zometa, or anything else? Maybe that could help. Please feel free to talk to us at any time, and know that we will be here for you. Bill

[Gerri]

Dear Sue,

My heart is breaking for you and what you are going through. I am so sorry that you feel so alone. I think one of the first things you need to do tomorrow is get in contact with a counselor at your school. If that is not possible contact the American Cancer Society or a local hospital and see if they have any suggestions for where you can get some help. You need a support system, and you need it now. Talking this out with others will help you tremendously.

I know it is so hard for you to be away from your mom right now, but all you can do is call her often and tell her how much you love her. Believe me, it will mean the world to her. Speaking as a mom, it is harder for me to see my children suffer than it is to go through any pain and suffering myself. Try to be as upbeat as you can and give her encouragement. This has been a long road for all of you and I know you are emotionally exhausted. As Barbara said, even though things sound grim, she may live a very long time with mets. What will help her the most is knowing that you are doing okay.

I'm glad that you reached out to us. Please know that you are not alone. Get that help you need. Remember, for some reason things always seem worse at night. I hope and pray that tomorrow brings you some relief.

Take good care sweetie and keep in touch.

Much love,

[Faith in Him]

Sue, thank you for coming here to share your feelings. There are many prayer warriors on this site and we will be praying for your mother's comfort and for your peace. Please know that we are here for you.

Sending a gentle hug,
Tonya

[loveher]

thank you so much everyone, i really needed some ears to just listen to me you guys don't know how nice it is to have your support. cyberhugs are always welcome.

oh another thing is that my mother doesn;t know. she doesnt speak good english. i dont know what to do. my mom does so much housework and cooks and cleans and i have a little brother, i can help her during the summer but i cant do anything the other 9 months when im away. i cant believe my dad let her do all that housework when doctors said she has to be carefull even when coughing.

im so worried. thanks for a ll the advice, the pain managment is one i will definently look into although my mom is pain free for the time being.

i wish it wasnt true. im probably delusional but my dad said he couldnt understand everything the doctor said bc his english is not so good as well. im too nervous to actually ask. i really wish my aunt was here.

sorry for ranting. im trying really hard not to think about it. i actually have math homeowrk to do right now, i dont know how im gonna focus.

i just wish i had a loving supportive dad who would actually take care of my mom. he's so distant and i cant fully trust him while im away.

does anyone have any suggestions? should i transfer colleges, right now i go to an ivy but if i transfer the college wouldnt be as good and my mom would be so mad with me. im just in limbo land right now, i need to figure things out

again thanks everyone for listening my random rants

sue

[lilyecuadorian]

dear Sue what language your mom speak ? if is spanish send me her phone number I will happy to make her company trough the phone .............I know how you felling ..and a big hugs is on your way

[SoCalGal]

Sue-
Where do you live? Let's find someone nearby to help you thru this. I am in L.A. I hope you are on the west coast. Maybe talking will help you. I would happily call you if you pm'd me your phone number or Can you call your Aunt or Grandmother? It sounds like your mom would rather you stay in school than move home but maybe you could ask her what kind of support from you she'd like and also tell her your worries. It's the time to be open with each other.
Sorry for all your pain but your mom has strength for you - she's your mom:) It would be good for her to help you and then you'd know how to best help her. Keep us updated.

[StephN]

Dear Sue -
Lots of good advice here and you are listening.

Most hospitals now have translators and social services available for anyone who needs them. Sounds like your family certainly qualifies for this.

To me, you need to first find out what is really going on with your Mom's situation. Remember that our MOTTO here is "Knowledge is Power." No matter how scary it is, the not knowing is usually worse than the truth.

With the true position of your mother known, you can really help her. This way you can use the energy you are spending worrying and in fear for a positive purpose.

Try to get a grip on your emotions so that you can get a clear picture. If the present doctor is not paying much attention to your mom due to language barrier, ask for help in this regard. She is entitled to it.

See if you can't work more closely with your mom. She sound like a die hard fighter and could use the support. If you have to take a short break from college to see your family through this period, it should not set you back much, and you will be forever glad you did that.

All best wishes for strength to carry on.

[juanita]

i am so sorry that you are going through this with your mom. you have picked a really great place to come for advice, support and prayers. these people are all great. i do add my prayers to theirs. please let us know where you and your mom are so one of us can call and talk to you.

[lisajones4]

Sue - I am so sorry your are having to go through this. You and your family are in my thoughts and prayers. I just wish I can give you a hug.

Lisa

[Mary Anne in TX]

Sue, the emotions are running wild right now because the information is so new and raw and she's your MOM! Take a breath and allow yourself to grieve the news and regain that super duper brain you surely have! You will come up with a wonderful plan that keeps your dream and your mom's for you alive and well. You can be there for her in lots of different ways. Sometimes a little "sus" (surprise), a card, a call, a good grade celebrated together...a daily reminder that your heart is always close at hand and available to lift her spirits and make the sun shine for her.
Take a bit of time to allow yourself to become a "good student" of the situation and you'll be able to find a solution that you can live with and one that blesses your mom for years to come.
Best wishes and lots of love, ma

[loveher]

Thanks everyone,
my dad used to be the primary caretaker for my mom, he used to go to appointments and things but now i cant really trust him. im really dissapointed that my family has sort of fallen apart, i wish my dad could be counted on. if i had good family support i wouldnt be scared of anything

I 've always had an issue with running away from things im scarred of. i feel like im not strong enough to keep going on

we are in NY, pretty close to NYC. if anyone is from around here i'd love to talk to you.

[loveher]

oh and stephN what kind of social services from hospitals do you know of and who should i ask, the nurses, doctors?

[kcherub]

I am coming in to this a little late, but I just wanted to say that I will be watching this thread very closely--you will find so much support and information here. Big hugs to you, as this is such a tragic situation. You are just a baby--too young to have to deal with this!!!

I agree that someone should be able to translate so that the communication between your mother and her oncologist is more clear. Hopefully, someone on the board with bone met knowledge will be able to talk to you and perhaps find someone in your area to help your mother. They could also probably help you with a list of questions...

I love this board.

Take care,

[Believe51]

I wish I could hug you right now, I hear the pain in your voice and wish I could help more. You have so much going on right now and it is so much to process. What I do know is that I too love this board and they have always helped to 'cut up our journey into bite-sized pieces' so that we could swallow it all. I remember one of my posts when I was so scared and depressed, I was also told to BREATHE. It was one of the most important things that got me through this all. Wishing you the best!! Sending prayers and cyber-hugs.>>Believe51

[sarah]

Big hug. Check on her taking bisphosponates for bone density. This is what I was told by a US oncologist: "if in bone take: Bisphosphonates to prevent osteoporosis such as:
Zometa
Aredia
will be given intravenously once a month"


I've been taking (I'm in France) Clastoban, a pill twice daily and my bone density actually went up. She needs her bones to be strong. Search on this site for posts on bone mets, bisphosphonates.
Stay strong.

hugs and love
sarah

[loveher]

for some reason, i couldnt get onto this board all yesterday and today, so glad im able to access it again.

i feel a bit selfish to be taking up so much space hear , i know everyone has a lot going on. but thank you guys so much, and for giving me a place to go to in times like these.

i told my mom and either she's taking it really well or shes in complete denial. she told me not to trust everything my dad says, and that we need to hear it from the doctor. we see the oncologist august 1st so i will need to find my courage and ask him and find out what is really going on.

she's basically comforting my which i feel really bad about bc im stressing her out. so im trying to not worry for the time being and enjoy the time i have left this summer with her and my brother

lately my mom's calcium has been low, she was at a critical calcium level a few weeks ago and i remember the oncologist telling me that it could have led to paralysis, he didnt tell me that paralysis is imminent. she's been getting calcium, potassium, and zometa. her calcium level is in the normal right now, she will get more next time to keep her toward the high end.

thank you everyone, i really really hope that all is well in your worlds and im glad to have found this safe haven

[chrisy]

Ok, so we now know that your mom is getting some "support" for her bones - that is good!

My recommendation (besides not forgetting to breathe, as Marie says) is to make a list of questions for the oncologist - because YES, you do need to get your answers there, not from your dad or for that matter, anyone else who may not really know what they're talking about.

Write down your questions so you don't forget them. There may be many treatment options that can help your mom live well for quite some time. You've seen here on this thread that this can be true. Once you know, really know, the situation you may feel more in control.

As for getting your emotions under control, we all can certainly relate to that in one way or another. When I was diagnosed stage IV, my husband was devastated and I cried all the way home from work every day THINKING about how hard this was on him. I think it's harder for those who love us, because to a certain extent there is a helpless feeling.

He asked my oncologist how can people live with this (not the disease, but the emotions). Her answer was "well, you just do" At the time it was hard to believe but it turned out to be true.

Not to say it is easy or that there aren't times when we get overwhelmed, but we do what we have to do. Sometimes that includes what I call cultivating a healthy sense of denial - and a determination to not let cancer take all the life out of life while we're still LIVING. You can still bring love and joy to your mom no matter what the circumstances.

Don't ever feel bad about "taking up space" here - that's why we're all here, to hug you and love you and help however we can.

Chris

[StephN]

Dear Sue -
Forming a plan is the best way to tackle a problem.

Glad you took the first step of having a frank talk with your Mom. I am sure she appreciates that more than you know. She needs a good ally right now, if there is no one else close to take on that role, it is your duty.

When you see her oncologist take a note pad. Write down what he says and ask him to slow down so you can make detailed notes. Any words you do not understand, write them down and ask him for an explanation in words you can understand. This way you will have the technical terms to look up for more information when you get home. Ask him to draw diagrams if needed.

About a translator. Maybe you can call the nurse who works under your Mom's oncologist. Ask that person if someone could be available to translate when you have the appt on Aug. 1. Even if you get a translator make those detailed notes as best you can.

Social services include helping with chores around the house, and any other assistance the patient may need, depending on what they are able to safely do. The nurse can put you in touch with a county office if the hospital itself does not have such an office.

***What you need to find out is the number of mets your mom has, their specific location, when she will have followup scans (and what kind) or blood tests, etc. Also how fast they are growing or if shrinking on the current treatment. Many people have bone mets successfully RADIATED. I suggest you ask about that. This is basically a crash course for you.

In the meantime, try to do some of the heavier work that might put your Mom at risk. Or do it WITH her if she will not give up certain of the tougher chores.

You have our love and best wishes for a good outcome for your Mom.

[CLTann]

Hi Sue,

Sorry to hear your plight. Have you discussed your mom's mets with any medical people? Is the bone weakening a side effect of taking certain medications? Both Tamoxofen and A.I. inhibitors will cause this problem. There are calcium pills and other bone strengthening agent that can delay or stop the bone weakening. If the weakening is from the mets, then has the doc/onc considered using radiation to stop the progression?

[GemmaG]

Dear Sue,
I live in New Jersey. PM me your phone number and I'll be more than happy to help you and your mom. I will listen.
Take good care of yourself and your mom.

Hugs,
Gemma

[Joan M]

Sue, You're very young to be going through this. Do you have any brothers and sisters, so that you can help each other. If you live near a city your mom may be able to get another opinion. I'm praying for your mom, you and your family. The door is always open here. Joan

[loveher]

ok so i thought about everything, cried about everything and didnt really sleep for the past 3 days but this morning i had a chat with mom. and this afternoon i had a chat with Flori (hope you dont mind me telling everyone). and now i feel much more sane. still scarred but my emotions are a lot less out of control.

i think lately i forgot that i should not let cancer control my life or my mom's life. these couple of days i've been like a walking zombie and i shouldnt be because for the time being my mom is totally fine, she's alive and not in any sort of pain.

so it makes no sense for me to be walking around with tears in my eyes. especially since when im sad my moms sad, when im smiling she smiles.

the greatest challenge for me will be being really brave and asking the questions llike chrisy, stephn , and flori have told me to. i know i have to, but i totally feel like chickening out. i wish someone would do it for me. i've never read my mom's reports from mri's or anything. so i'm just wondering if any of you have been too scarred to find out?

thanks to everyone here, i've read every post here multiple times and they make me feel less alone in this journey. and thanks for all the great advice.

[Bill]

Sue, we are all here for you. You have mentioned a language barrier. If you don't mind my asking, what language does your Mom speak? If you feel overwhelmed with everything going on in your life right now, maybe you could contact a support group, or talk to a counselor or doctor. We all need help now and then. Also, right now it is so important for you to eat as healthy as you can and get your rest. You will feel better, and like you said, if your Mom sees you smile, she smiles. Eat Healthy, exercise, rest, and relax and try to clear your mind of all your stress at least once a day, either through prayer or meditation. You are going through alot right now, and if you don't take care of yourself, you are no good to anyone else. As for being scared, I'll let you in on a little secret, we are all scared of losing those that we love, and we are often scared of not being strong enough to take care of our loved ones. And, at times, we all wish that we could run away. That's normal, and natural. Once I heard "courage" defined as "being scared to death, but forcing yourself to be brave, and acting as if you had no fear", or something like that. It's apparent to me that you are one courageous young Lady. You and your family will be in our prayers, Bill

[juanita]

it's normal to be scared to read the results of her tests. i think that's part of what makes us human. at first i was terrified to know anything about my cancer. but then i had a difference of opinions with my onc and looked something up. that kinda opened the floodgates for me because then i had to read everything i could find about breast cancer. you have one advantage though, you already know about this site. i didn't find it till later. hang in there, we're all behind you!

[ElaineM]

I am so sorry to hear about you and your family. You came to a good place for support.
Is there anyone at your school you can talk to? Is there a clergy member you can talk to? Can you call your mom's nurse and ask her for suggetions? Most hospitals have social workers who might be able to make helpful suggestions. Is there a neighbor who speaks your mom's language? Can that person call or visit your mom once in awhile. Are there organizations in your mom's community that might be able to help? Non profit groups like Catholic Charities have some services for people no matter what their religion is. Maybe the American Cancer Society in your mom's community has services you and your mom could access. In the meantime it would be great if you can spend a little more time with your mom.
Take care. Give your mom a hug from all of us over here. A hug to you too !!
Peace,
ElaineM