Coping with Existential Terror?

awsmGirl
awsmGirl Member Posts: 38
in Breast Cancer #1

I am in very early days, just diagnosed last week.  I don't event know what Type, or Stage, or any of that technical stuff.  The mammogram and biopsies were enough to make them now want CATscans, MRI's (happening next week), so it may have spread -- in which case i am prettymuch Effed, right?  But i am already set for a Port Installation on Tu-5/31, and to be starting Chemo in 2-3 weeks, so this is REAL: it's just sorting how bad the details are. 

I am generally by nature a super-positive cheerleader type -- i'm Suzy Sparkles, the one who organizes events, the one who Does for others, and i am approaching this for the most part with my usual positivity, snark and feistiness.  I am putting my energy into positive planning.

BUT.

I find myself in times of pure existential terror, blubby and hysterical: i've had to take a couple of Valiums (and gawd bless the Doctor who prescribed them, cuz oh boy, do they help. Like a big warm blanket).  I have no family history!  I breastfed both my sons! I could lose some weight, but generally speaking, i'm healthy and FINE!  so W.T.FFF???  And i have THINGS TO DO!  

How have you (who have been there) coped with this blithering, incoherent and hysterical "ZOMG I'M GONNA DIE" thinking?  

I am not religious, barely even spiritual (tho "no atheists in foxholes," right?).  And i am hoping that the further tests will give me the GOOD NEWS that it's "just" Breast cancer, "just" Chemo and "just" Mastectomy, and not "put yr affairs in order" -- but right now, i am a mess.

Here's who Knows:

  • My Partner of almost 4 years knows of course and he is wonderful, a rock.
  • I've told my friends ("Chosen Family") who have been wonderful, supportive.  
  • I've told my "ex"spouse (separated 8+years, technically still married because finalizing divorce would break us all financially -- so i have insurance thru him) 

I haven't yet told my sons (19 and 22), because i cannot give them a Problem, without at the same time giving them the Plan that will hopefully be the Solution.  People say "they'll be strong and supprtive of you" -- and of course they will, they are fine, decent young men -- but i dont WANT them to have to be strong!  i want them to have these last moments of peace and security, before i take it away forever!  

Then there's my sisters and Mom:

  • Sister #1 = is largely absent, living at a distance.  She shows up 1x every month or 2 and they kill the fatted calf for her, but she is too busy and wrapped up in her life to be supportive in any practical sense.  Not that she doesn't love me in her way, it's just, she's busy.  
  • Sister #2 = is a negative personality, always has been the "Eeyore" type: life is a series of things that happen TO her, and it's all just bad, bad, bad.  She fell down stairs at work about 10years ago and suffered permanent disabilities with chronic pain (good for her, she has just set about going off opioids, so that's good).  She suffered complete Kidney failure last fall and is on Dialysis 3x/week, and lordamercy, it is all DRAMA.  She lives with my Mom.
  • MOM = Mom is *awesome*, my Mom is *great*! But about 3 years ago, Mom had uterine prolapse surgery and they knicked her colon, so she was VERY sick, lost part of her colon and is now on permanent Colostomy bag.  None of this has helped the health of an 87-1/2 year old woman who is otherwise a dynamo, busy with friends and activities (she and i are very much alike).  Last week Mom ended up in the ICU with an intestinal blockage, because she has developed a hernia out of all this, and the stress from my sisters constant DRAMA DRAMA cannot be helping.  I am at their house 1-2 days every single week (this has been the case for the ast 5+years), and i get to be The Help: cleaning, washing, yardwork, groceries, errands, cooking, etc etc etc.  Mom is now out of the ICU, but still in hospital (next step is a rehab place for about 2weeks)

...i feel like Going Public with them is going to raise the DRAMA DRAMA levels to astonomical heights while not helping me, or them, in any way.  And i am seriously concerned about what this stress might do to hurt my Mom and compromise her already fragile situation!  I still havent gotten to the nuts and bolts of how their household will function if/when i cannot be there every week to Do for them...     Oh yeah, i also have a brother, but he lives on the other side of the country and we never hear from him, so...whatever there.

*  *  *

So you can see that i am functioning under terrific stress even before this, and now, it's just...  I don't give a good gosh darn about being sick, losing my hair (wahh, my lovely hair!!!), losing a breast -- none of that matters.  i just want to live.  And i am SO scared.

i look to all-yall for any words of kindness, support, inspiration, and i thank you for being there for me.  i hope to return the favor!

~awsmGirl

Comments

  • sbmly53
    sbmly53 Member Posts: 1,522
    #2
    Terror is a common starting point for all of us

    it was for me. I cried, was angry, and then I, I don't know, planned? Forged ahead? Got through? Sleepwalked? All of those. TAp your inner strength and take care of yourself, don't let others and their drama affect you. You can do this! You're awsmGirl!!!

    Sue

     

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited May 2016 #3
    We're here

    It is a terrifying experience no matter what stage, grade, etc.  Especially at first, when you don't know what you're dealing with.  Once all the ducks are in order, you can begin checking things off your list as being behind you.  The initial treatment can always get done and over, but the fear does continue.  It's just different.  When you have a plan of action set up by your medical team, you can tell your family what your life is going to be like for X number of months.  Sorry your sister will need to pick up the chores you normally do for them.  You need to take care of yourself at this point.  Learn as much as you can about what is going on with your disease and treatment and remember, someone is always here for you.  My most valued support in addition to this group was a personal friend who was going through chemo for a different cancer at the same time as me.  We shared war stories, side effects, fears, etc.  No one "gets it" like someone who has been there.  Others really don't know what to do and can say some really hurtful stupid things to you.  The family and friends served an important role for me and some were great (husband, kids, bff), but others I felt really let me down.  My best go to was my friend having chemo.  Take care and please keep us involved as you go on your journey.

    Suzanne

  • awsmGirl
    awsmGirl Member Posts: 38
    #4
    Thanks

    ...it's good to hear words of support.  I am trying my best to keep my head on straight and just deal.  One of my coping tools has been setting-up a snazzy multi-pouch folder with pretty matching printed "manila" file folders, to organize my paperwork and "stuff" It looks cute and helps me feel liek i have the teensy-est bit of control.

    so far, my friends have been AWESOME, really super helpful and supportive.  That's a blessing.

    Please keep teh good ideas and thoughts coming!!!

     

    ~awsmGirl

  • Marcie50
    Marcie50 Member Posts: 2
    #5
    awsmGirl said:

    Thanks

    ...it's good to hear words of support.  I am trying my best to keep my head on straight and just deal.  One of my coping tools has been setting-up a snazzy multi-pouch folder with pretty matching printed "manila" file folders, to organize my paperwork and "stuff" It looks cute and helps me feel liek i have the teensy-est bit of control.

    so far, my friends have been AWESOME, really super helpful and supportive.  That's a blessing.

    Please keep teh good ideas and thoughts coming!!!

     

    ~awsmGirl

    It is terrifying

    i was just diagnosed last month with Triple Negative, it has been a whirlwind. I had my first surgery for a lumpectomy, sentinel nodes and port placement on May 2, the nodes were clear, Thank God! But the margins were not, so I had surgery this morning for a re-excision of lumpectomy. Scheduled to start chemo June 3. Waiting for the insurance company to "approve" a EKG and ECHO before they will start chemo. Also waiting for my FMLA paperwork which I am sure are in a stack on someone's desk :/ so much to do and it can be so overwhelming. I do have a good support system and am very thankful for that. 

    Please know you are not in this alone! lets Hope for the Best and Cope with the Rest! :)

  • camul
    camul Member Posts: 2,537
    #6
    awsmGirl

    Cancer diagnosis is always a scary spot to be in.  Remember though, as much as none of us want to be dx'd with a metastatic disease (stage iv, spread outside of the initial area, like to bones, liver,lungs, or distant nodes,) is. O longer an automatic death sentence. Being stage iv does sure k, but we are no longer automatically effed!  I am going on six years with it.  Once you know specific's, get a plan in place, and start treatment, a lot of the fears change.  You feel like you are fighting this disease.  

    I wish you the best.  

    Camul

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    edited May 2016 #7
    Not much advice , but someone

    Not much advice , but someone gave me a journal...I thought silly at frist, but I used it at their suggestion. In hindsight , I see it was helpful..

     

    Just a thougth/ suggestion.

     

    Denise

  • ppurdin
    ppurdin Member Posts: 1,181
    #8
    Terror

    this is my second Cancer diagnoses .I go through spells of being scared out of my mind.I Pray a lot and have opened up more to friends.Even though I usually am very private.Its hard to let people into your private life.But I have found it to help most of the time.And these boards are wonderful helping kind people.Great to have someone to talk to on here.Love and Prayers

  • Sunshine_Hope
    Sunshine_Hope Member Posts: 4
    #9
    Initial terror

    Yes, it hit me, too.  I was just going to let the disease take its course and die!  I believe in Christ Jesus, so I believe I will end up in heaven then.  However, my pastor at church told me that even if the treatment was painful, I still had to go through the treatment if there was a chance it would stop the disease. 

    Myy surgeon recommended mastectomy, chemotherapy and radiation.  That really scared me.  So someone suggested I get a second opinion.  So I did, and the doctor was kind enough and brave enough to tell me what the disease would do if I let it go.  Then I went through with surgery and chemo, and am supposed to begin radiation this week, if the insurance approves it..   Even if it has spread, the chemo goes through your whole body, and can reduce the size of the tumors, if there are any more. 

    Don't give up hope yet!  By the way, my user name Sunshine_Hope is to remind myself to have hope as well.

  • awsmGirl
    awsmGirl Member Posts: 38
    #10
    An update

    Well, i sorta lucked out: the official word is Stage 3, ER+, but it is not in my blood, not in the rest of my body, not in my bones.  "Just" a 6cm mass in my left breast, and a tendril into a lymph gland.  So i am looking at 5months of Chemo -- "TAC" -- then if i am lucky and it responds well, surgery will be a Lumpectomy (or a Mastectomy if it doesnt reduce as much).  Probably followed by more Chemo/rad treatment.  So i have a helluva year ahead of me.  I start Chemo next week.  I plan to kick this thing!!!

    I've told everyone, and "gone public" on Facebook.  My sons took it well, they are such awesome boys and i love them so!  My family was a bit DramaDrama, but that was expected.  My friends and "chosen family" continue to be my anchor; such good people.  I am blessed.

  • bonbondidit
    bonbondidit Member Posts: 116
    #11
    You will be amazed

    You are going to see a side of humanity like no other going through this fight. You will be in awe while you are scared. I have some of my best experiances of my life while fighting at the same time. It's pretty surreal. My kids were 20,20 (twin daughters) 17 (son) and 13 (son) at the time. My daugheters left college and came home to care for me for a semester, taking turns with my husband. My 17 year old son Nick took Zack to school and picked him up for us. It turned into a team machine. I was in awe of their focus.  I know who they are even more than before. I know I am truly loved. You will see the same on your end.  You will also see some people shy away (that's just total fear) try not to judge them. You will grow from this experience I promise you that. My whole perspective on things is different now and I am so greatful for that.

  • peony
    peony Member Posts: 306 Member
    #12
    Hey awsmGirl

    Welcome to the Stage 3, ER+ Club. I think my greatest fears were while I waited to hear if the biopsy was positive or not.  I thought I would lose my mind.  Once I actually found that I did have cancer, I relaxed. Somewhat.  When I finished chemo in February, I was terribly depressed because of the side effects I was dragging along with me, but I found my greatest inspiration in a tragedy.  I had a niece, 4 years younger than myself, who was struck down with a cancer who's origin was never identified. She had surgery on her stomache and intestines, but it was also found in her lungs and it couldn't be determined which came first. She was diagnosed in October 2012 and by March 2013, she was gone.  My family was devastated, confused and frustrated.  She just didn't have enough weapons to fight it. Not enough information; not enough time.  So when I started radiation in the same facility she used, I thought about how scared she had been. I thought about the differences in my situation and hers and I felt a weight lifted from me.  I did have more weapons and my case, so far, wasn't running on the same track.  I wasn't fighting in the dark and I could see a potentially positive outcome. Maybe my normal wouldn't be the same, but I was still here and as long as I was here, there was hope.  I'm not saying I'll never be afraid or depressed again, but I don't think it will be the same.  So find your inspirations where you can, awsmGirl.  And stay awsm!                                   

     

  • ppurdin
    ppurdin Member Posts: 1,181
    edited June 2016 #13
    Stressed

    This is my second diagnoses of Cancer.The first time was breast Cancer soon to be 7 yrs.ago.I dint tell to many people the first time.And I had all the feeling you are having.I Prayed a lot.The people on these boards was awl sim.They helped me so much.I wrote a journey.I could put my thoughts down that way.

  • Dulcimertom
    Dulcimertom Member Posts: 1
    #14
    What the heck?

    hello all.  Ok, I'm a guy. And so lucky to be in the 1%.  Breast cancer which was supposed to be a joke for a guy...stage 4, lung. Ton of bricks. I'm in the freaking out stage. Walls closing in. Which end is up? Any help or advise welcome. 

  • DaraB
    DaraB Member Posts: 5
    edited June 2016 #15
    Coping

    I'm in the very new stages as well.  I found my lump about 3 weeks ago after a clear mammogram in February.  I know the feeling of panic that sets in early, but I just lost my older sister to stage 4 breast cancer in October.  She was stage 4 when diagnosed, a 10 cm tumor, and 3 out of 9 nodes positive. She still had 4 years of high quality life, but it had metastesized to her bones and liver within 1 year.  My daughter has told me that I went straight from shock to warrior mode and she was worried that I had nothing in between.  It's just that I felt I had to shelter family and friends and I had to be as strong as my sister was.  We haven't told the grandkids yet (ages 9-18mo) and I worry they will automatically think I will have the same results as their aunt.  I found the cancer very early, it's invasive ductal carcinoma, about 2 cm.  I've been told I'm a candidate for lumpectomy except that my family is riddled with cancer so I am going through some genetic testing first.  I think the hardest thing is all the waiting!  You hear the word cancer and you just want it gone, but everything seems to move slowly in slow motion.  

    I'm finding it helps control the fear to read, organize, then just stay busy.  I have a 3 ring notebook that I put together for all the paperwork, appt., questions, research.  Quite honestly the whole thing sucks.  I've decided to surround myself with nothing but positive energy, and have even "unfriended" someone on facebook who has been a negative in my life.  Seeing all of you, and how long many have fought this battle is so encouraging.  Thank you for the forum!

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