devastating news im so sad/worried/anxious everything - Page 2

loveher · 07-23-2008, 12:33 PM

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

kcherub · 07-23-2008, 12:44 PM

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 · 07-23-2008, 02:08 PM

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 · 07-24-2008, 06:13 AM

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 · 07-24-2008, 08:04 AM

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 · 07-24-2008, 09:07 AM

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 · 07-24-2008, 10:41 AM

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 · 07-24-2008, 02:20 PM

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 · 07-24-2008, 05:36 PM

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 · 07-24-2008, 06:29 PM

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 · 07-24-2008, 06:34 PM

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 · 07-24-2008, 08:56 PM

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 · 07-24-2008, 08:58 PM

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 · 07-24-2008, 09:38 PM

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