Anyone want to sit and wait with me?

ksusan, beeline, congrats on your good news

I am too in the waiting room now... and it's a miserable one. It's hitting me hard. Not just this waiting, I mean the whole situation. I feel like crap from my last AC 1 week ago. I'm desperatelly trying to keep caring for my kids and look normal for them (they are small). I am trying to look normal to my DH and failing. It's very hard on him. I constantly think about them, the kids + DH. What had I done to them (albeit unwillingly).

What am I waiting for - 1. I have a brain MRI next week. 2. Afterwards, Taxol + Herceptin starts. 3. Talk with my MO about Perjeta which is very new in the EU for my dx and I fear I won't get it.

JaBoo,

Can you get anyone (family or friend) to help with the kids? It IS hard to parent during chemo. You need to take care of yourself, too.

Coleen, yes, I should be working on my guilt.. .. I'm a mess right now. I miss my old self and need to cry this over... I see our dx and tx are very similar, we are the same age with 2 kids. I see you received neo-adj tx, whereas I went under the knife first... I'm a super anxious freak, so I am glad I went for the surgery first. although it may have been a mistake, I see neo-adj tx is used more in our cases.... anyway, just rattling, sorry. Actually, I've been reading your posts a lot through the boards. Good luck with your tooth problem, that sucks, hopefully they get it done quickly.

My brain MRI is on the 11th. Apparently, they do it for everybody here, as part of staging prior to Herceptin tx. Good luck to your brain MRI on the 20th.

I'm currently very anxious about Perjeta. I think I should receive it. Have several risk factors, like grade 3 + lymphovascular invasion + node involvement + tumor over 2cm. But our insurance system here is very stiff and I fear the doctors may be too. for early stages it's used only neoadjuvantly, the EU aproved it for adjuvant use only this June. I have a blood check and app with my MO on Friday, so I will know more. I don't know what to do more now....

waiting and trying to look normal to everybody and then waiting some more

Colleen, beeline,

I was hoping the second opinion would offer clarification on staging but have yet to see it. Hopefully my doctor will be willing to show me the e-mail but if she won't I think that would be very unfair. From what I understand, it is Stage IV because it is a recurrence, and a new metastases, and I think, because metastases in these particular lymph nodes is classified as distant (M1.) But I would still like further clarification. My onc and I have communication problems. I'm a high-information seeker. I like to know things precisely, with a complete rationale explained to me. She sticks to brief layman's terms and glosses over a lot.

Coleen, how'd it go at the dentist?

Amica, craziness!

Oxygen18, than you for your words of welcome...

Coleen, I have similar feelings... I, too, wake up and startle immediatelly with the realization what is happening... It's like getting a spotlight shine into my eyes and a siren howling when I wake up. My attention is wandering and I'm often forgetting things/issues concerning the kids.

I got to go to the surgery first because the tumor inicially was 15mm and nodes clear after mammo and ultrasound. after surgery, the tumor was 21mm and one node got micromets. surgery with close margins, ugh. Your nodes were found out to be positive right away?

It's great that you receive Perjeta. I'm anxious about it.

Amica, I'm so sorry for your problems with the system over there! We have a state insurance system and it is often similar. I don't have to worry about the cost of my treatment (apart from Perjeta - that's not approved and can't be covered) but also I don't get to decide a lot of things.... With second opinions it's similarly difficult here. But many people simply get their records and make an appointment somewhere else on their own, although this is being discouraged. Would this maybe be possible for you? Try and get an appointment separately? Well and I hear you about your MO speaking in laymans terms!! It happens here more often than not. They like to decide and do that without any options here! But I like my MO, she answers my questions, so I'm at least lucky in that.

Beeline, I can so much relate to you when you say you are used to take care of everything!!! I am the one taking care of everything around the kids, their doctors, kindergarten, courses, clothes... I realized some days back I have to give all that info to my DH. I'm somehow thinking very much about the possibility of my death, and what would DH do about the kids. I have to write everything down for him, for my peace of mind. No, the government doesn't offer any assistance to cancer patients reg child care, but there are other types of assistance from the state security system. But the kids have kindergarten, that is very helpfull. not in the summer, which was very difficult during chemo. now they can go there and it's very good for them. It's very cheap.

Thank you all

InnaB

There are no patient advocates or nurse navigators at the Juravinski, except if you are an indigenous person.

I have to be my own advocate, which I am trying.

I called the doctor today. she's out of the office.. They wouldn't even give me my MRI results, wanted me to wait until the 11th when I have an appointment with the doctor. I left a message with her nurse to see if she wouldn't be willing to give me the MRI results. Why are patient records kept from the very person, the only person really, who cares about them?

You are on our minds Amica.

Amica, Great news on a clear MRI. Wow, $30 for a copy of one test result, yikes. It is frustrating not to be able to access your health records. I understand their reasoning as to protect your personal information, but the waiting is killer. So glad your Dr.'s office got the report to you. I work for the health system where I am getting treatment and it was frustrating for me to get my initial imaging report. I would lose my job if I access my own records.

Wow, great news!