Addicts in Recovery

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited January 2012

    I am at the freak out point here.  Since Saturday I keep dropping into pure panic.  I feel overwhelmed and scared.  I've been able to speak to a cancer doctor who is a friend of a friend andshowed him my lab results. He's assured me that I'm Stage II and will be fine (no enlarged lymph nodes on the MRI and that's a good sign).  I've done my best to figure out how to handle the recovery (I'm single and live alone).  Friends have offered to stay with me and my aunt and uncle have offered to let me come to their house.So I'll be cared for.

     Still I'm freaking out. I'm overwhelmed with everything and every little tick makes me think the cancer has spread. Oy, oy, oy.

    Anyway, I've been talking to folks on the phone etc but still anxious.

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  • Wren44
    Wren44 Member Posts: 8,585
    edited January 2012

    Sounds like you don't have a treatment plan yet. Until you do, you don't really know what you'll need for recovery but it sounds like you will have lots of support. Once you know what the steps will be, you can take them one at a time. It's the uncertainty that's hard to bear. Remember to take it one day at a time and keep coming back here for support.

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  • macatacmv
    macatacmv Member Posts: 1,386
    edited January 2012

    gritgirl, hang in there. I (as you might have noticed) have been on a roller coaster of emotion and fear. I  am waiting for a post op appt and first meeting with onc. The most solace I can offer you is that you are not alone! There are so many great women on this site, that have been through so much and are still living life to the fullest. That gives me hope and inspiration. Now do I feel upbeat and positive all the time, noooooo!!!!! This is hard. Who would want to go through this? it is life on life's terms and it sucks. But we can persevere and take the next step forward. I am going to start writing my steps over, starting with the first step, I am powerless.......

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited January 2012

    That's for sure, I am unbelievably powerless over this. I need to ask someone to help me with all this. Even the practical details are overwhelming me at this point. Time to turn it over.

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  • macatacmv
    macatacmv Member Posts: 1,386
    edited January 2012

    I finally asked a friend to go with me to my appt. next week. I use to sponsor her years ago, but she doesn't go to meetings anymore. We have stayed in touch, her husband goes to my home group. She is the one person who can handle this without me feeling like I need to take care of her. I was trying to convince myself that I didn't need someone with me. But the truth is, it is hard for me to ask for help.

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  • twistedsteel
    twistedsteel Member Posts: 156
    edited January 2012

    Maca

    When choosing a core group of true support people, you hit on the key. Choosing people who can keep their own agenda in check, their own fears and their own needs in check and be there for you and only you. Especially in the beginning. The whole getting "setup as a cancer patient" with appts and info and choices and all that stuff is a full time job and draining in every way possible.



    The key is that when the dust settles and you are in midst of the next step, to check in w your main support person and hear their "stuff". Their fears etc. But only when on solid ground yourself.



    I have my worrier friends, my strong friends, my catastrophizer friends, my aquaintences etc. They all have a spot at the table for some reason. Choosing when and where and how is major.



    TS

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2012

    gritgirl, it's true, until you have your treatment set up you don't know what's happening!! You will feel much better when all the appointments are in place and your only job is to show up.

    Strangely, you will feel the same way as now when all the treatments end and you are back "on your own".

    Is there a support centre at the hospital you are at? It's important for your team to know how upset you are. They may assume you are all coo and calm. They can help you too.

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited January 2012

    barbe, i'll find that out tomorrow when i meet with the surgeons. i'm meeting with two of them to see which one and his/her team feels like the best fit.

    i've been on my own through this whole diagnosis thing. my gynecologist has proven to have a horrible bedside manner (i'll find another gyno). the best person i've spoken to is the insurance company nurse case manager they assigned to me. i also have a friend who is friends with a doctor at the national cancer institute (living in DC can be good).  i scanned my test results and sent them to him and he went over everything with me, god bless him.

    i'm a pretty practical person so as long as i have something to "do" i manage better. i'm at a point where i can only wait and that, along with feeling overwhelmed about how to prep for this, is making very, very anxious.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2012

    Grit, your thoughts are very articulate and structured, so I don't think or sense that you are in a full-blown crisis, but you do know to go to the ER if you bottom out, right? I've gone twice in my life to the ER and said "I'm afraid of myself right now, please help me". Boy, did they ever take that seriously!!! You have the right to get some emotional assitance through all this. Please, please see if your cancer centre has some support team that you can lean on for a bit. Otherwise, as much as we can, we are all here for you, sweetie!

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited January 2012

    Ok, gritgirl.  I have a couple of suggestions.  the only thing right now in front of you is your appoint with the surgeon tomorrow. I took a tape recorder with me, even though my sister went with me, and asked the surgeon if it was ok if i taped it.  She said ok.  That was really helpful for me because I knew i could play it again later.  which i did. so that might be something to think about.

    can you get to a meeting tonight?  can you take someone with you to the appointment tomorrow?  The surgeon appoint was the scariest for me and I walked out of that appointment feeling so much better than when I went in.

    Make yourself a nice dinner if you can.

    Most of all, remember we are here for you.  You can check in with us after your appointment--so that way you don't have to go home to an empty home.  Wishing you peace and serenity.

    Liz 

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited January 2012

    I appreciate everybody's wonderful feedback.  My friend Jo Ann came with me today. She brought a tape recorder. It was a long day. I met with two surgeons and a medical oncologist today. Here's what they told me:

    • The larger tumor is in the left breast and is too close to the pectoral muscle, so chemo and herceptin comes first in order to shrink the tumor;
    • After 4 months of chemo, then surgery, most likely a bilateral mastectomy and hopefully reconstruction, will be done at the same time.

    Because the MRI doesn't show enlarged lymph nodes, the opinion of all of the doctors who have seen the test results is that likely there is no lymph node involvement, but this will be confirmed during surgery. If the biopsy of the newly-found suspicious areas in the right breast show cancerous cells, a sentinel node biopsy of the those lymph nodes will also be done.

    I feel like I've chosen an excellent doctor and medical oncologist. Dr. Christine Teal at George Washington University Hospital in DC will be my breast surgeon, and thank God they assigned me a  a breast care navigator. I also met with Dr. Hernan Vargas at Inova Fairfax in Fairfax, VA and he was excellent as well. But unfortunately, the many drives I would have to make to Fairfax (about 45 minutes) for the many appointments would have only added to the frustration.

    Tomorrow I have the next biopsy on the right breast, and hopefully next week will be the various scans and a heart echocardiogram, along with blood work. Then they'll put a port in for easy access for chemo -- I've already told the oncologist that I am extremely needle phobic and it'd be better for everyone involved if I were under conscious sedation for this part. I often have a hard time convincing people that I really will faint if you poke me -- I've been known to faint while laying down -- but this doctor got the point right away. Thank God.

    Does this sound like too long for chemo?  I'm overwhelmed even if I don't sound like it. Going to try and get some sleep tonight. Got very little last night.  I really, really appreciate you all.

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  • macatacmv
    macatacmv Member Posts: 1,386
    edited January 2012

    gritgirl, it was good to hear back from you. Positive thoughts for the biopsy today and for the rest of your journey. 

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited January 2012

    Macatac, you hang in there too

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2012

    grit, when a plan is in place it`s so much easier to just show up. Not too much on your part is needed.

    Nancy, how are YOU doing?

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  • macatacmv
    macatacmv Member Posts: 1,386
    edited January 2012

    barbe, I am hanging in there. This morning I wanted to jump out of my skin, but I took the dog for a walk instead. I find I am waking early in the morning and having trouble quieting my thoughts. I will play solitaire on my phone or read but this waiting business is getting old. I'm not sure if I am just in limbo between doctors (surgeon is all done, onco hasn't begun) or what. Not getting a response from either one. So just have to see what will be. Acceptance. I have started writing through the 1st step again.

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited January 2012

    Nancy, can you a different doctor? They should be responding to you. Where do you live? I'm pretty good at looking for stuff. Maybe I can help you find a better doc.

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  • macatacmv
    macatacmv Member Posts: 1,386
    edited January 2012

    thanks gritgirl, how are you feeling today?

    You're right I can fire my health care provider just like Mitt Romney.lol

    I live on Martha's Vineyard, so have access to all the hospitals in Boston. My local hospital is in partnership with Ma General which is where I have been going. Sent there right after 2nd mamo. I have been just doing what I was told, go here, get this done, wait then get this done. No choice involved on my part. I have the MA state health insurance so there is some limitations with that but have not run into any problems yet. I think I just have to wait until Monday and see what the MO says and then take it from there.

    Having said that I am having a hard time trusting that I am being taken care of. It is bringing up a lot of feelings from my childhood  of not feeling safe, not being told the truth and having to fend for myself. I thought I had worked through those feelings but apparently not. Always lessons to be learned. 

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited January 2012

    Macatamv

    Your post sounds so much like my story. It was hard to feel like they don't care.

    But, I think they do, in that doctorish kind of way. I had a string of infections after attempting Mammosite, and had more appoitnments with my surgeon than either of us had ever planned. I finally got up the nerve to say: But, none of you ever talk to me!
    He looked startled, then said, what did MO say when you stated hormone therapy.
    Me - That I would do fine on tamox, here's a prescription, bye.
    Evidently, according to the surgeon, he took my decision to refuse AIs to the tumor board - I had been diagnosed with osteoporosis the previous year, just as I was starting menopause, and had a low-grade tumor. He was concerned, I think, largely about if he could get blowback for not meeting standards, but that's still a lot different from not even knowing my name, which is what I thought.
    Large institutions like the one I was treated at, and the one you are being treated at, are tough on those of us who never felt safe (and, honestly, we usually weren't). My first program was ACOA, and it's been 28 yrs now, but I still have a strong vulnerable streak. Unfortunately, now, it comes out more in attack modeYell but I suppose that's still better than curling up in a ball and refusing to deal at all.
    I did switch my follow-up care to a smaller, private practice. though. I feel safer.

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited January 2012

    It's all about comfort.  I feel I can trust my surgeon and medical oncologist and now I feel more positive, thank god.

    Because both my parents were busy with their addictions, I grew up basically taking care of myself. In a way, that's serving me well here.  I actually really, really have to work to ask for help.  Life has been wearing me down (the death of my mom 3 years ago, my sister a year ago, bottom in AA 2 1/2 years ago) so out of just tiredness I'm willing to ask for help more.

    as my counselor tells me, i need to also tell people specifically what i need help with. i just asked a friend to go with my when i'm having my port put in and that was hard for me to do. but it'd harder for me to be alone at that procedure.

    Weirdly it's a combination of taking care of myself and letting people take care of me.

    Macatac, thank god you have insurance through the state. that's wonderful.

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  • macatacmv
    macatacmv Member Posts: 1,386
    edited January 2012

    gritgirl,I do have a lot to be grateful for and I try to keep that in mind at all times! I don't like the way I feel and want to jump out of my skin, but I am healthy enough to take my dog for a walk in the snow and appreciate the beauty around me. I know these feelings will pass. 

    ICanDoThis, I have been in many A programs. I fit the bill for most being very obsessive and compulsive in different areas of my life at different stages of my life.   I have always been the one who takes care of and find being this vulnerable hard. I need to find people to add to my support group that are kind and supporting. Most are saying, what's the big deal look at all you have handled in the past, you'll get through this. So I start to question my feelings of being sad and lonely and scared, which then I manifest into I must be crazy to feel this way.

    (makes me think I need to get through the 1st step and start writing on the 2nd..... I am being restored to sanity.)

    I realize that a lot my feelings of mistrust come from my father dying in March. At my insistence he entered the hospital on a Tuesday and was gone by Friday. I was his medical advocate and I knew he was dying, the doctors knew he was dying, but they wouldn't talk to me about it. It was all about managing the symptoms.

    Maybe when I actually meet these doctors I will feel different. One day at a time. 

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  • thatsvanity
    thatsvanity Member Posts: 391
    edited January 2012

    Barbe1958 you are funny!

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited January 2012

    Macatac, hang in there. We'll get through this together. I'm so sorry about father. So sad. I'm doing my best to take it one day, one procedure at a time. This is just hard. I do my best to be around supportive people. I need all the support we can get. I'm so grateful for this group.

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