Just got my membership card

ChaosRains
ChaosRains Member Posts: 132
edited September 2014 in Just Diagnosed

I got my biopsy results yesterday-- or was it the day before?- nah it was definitely the day before yesterday.   I'm losing days here, as well as obviously having already lost any functioning brain cells,  when I take off my clothes I apparently decided to throw my favorite soft comfy nightgown in the trash can instead of the clothes hamper, walk around with balls of dryer lint in my hand trying to figure out exactly why I'm carrying it around... Geesh!  

(sorry I am not trying to make light of any diagnosis and I am not trying to offend anyone with this post just trying to find a bit of humor in this whirlwind nightmare)

Either way I knew it wasn't good news, the doctor I had not met but once came in crying... *sighs*  I feel like I need to console her?!  

DX:  Invasive Ductual Carcinoma - modified black's nuclear grade 2 features- high mitotic rate estimated to be 54 per 10 high powered fields (there is more about anastastomosing cords of tumor cells and necrosis but it all kind of french to me right nos so going to have to do some research)

Then she pulls out this little pink shopping bag with literature and resources and... topper here ... hands me one of those pink beanie/mitts/ski cap not sure of the correct terminology but anyway my wins out again there because while the information and little goody bag is a very sweet caring gesture -- its just so wrong! Save that for a follow up visit.... 

I was just trying to wrap my mind around hey you have cancer and its invasive, invasive is bad... and then the little cap... oh F$%! I hadn't even thought of my hair falling ---

Gee thanks!  I have cancer but now I have a pink little hat for when my hair falls out-- I hate pink to make matters worse.

My sister-and-law laughed so hard we were crying on the way home just because of that! 

I imagine there will be days like yesterday where everything was a big fog and my eyes look like when the Nutty Professor had his peanut allergy and got golf ball sized swelling around his eyes... but there is always good and bad ...

I'm new here, I don't know any of you, but just feel like I have to tell all of you -- just stay positive, mind over matter, don't forget who you are because you are not your diagnosis ... 

I was really worried about how the people I love were going to react, but I just decided that Im just going to be me... with all my sarcastic sometimes even morbid humor.

Also, I gave myself 3 days to feel how ever I wanted about the dx.  Sounds weird and I dont know how I decided 3 days but for 3 days I am allowing myself to wallow in my sadness, get angry, cry, whatever... (this is my last day) after that I'm going back to being me...

I haven't felt sick this whole time, workout, eat right,  I actually dont even feel sick right now just stress and tension so I've always been a rebel at heart and I'm going to be the same this time... I dont feel sick so I'm going to do what I can while I can 

(Sorry its so long)

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited May 2014

    Chaos, so sorry, it all sucks. You will be hopping on the breast cancer roller coaster, full of twists & turns, bumps & mild nausea. 

    Continue to take a friend to your appts. to take notes. Some ladies record those first Dr. visits, so they have them. 

    Hopefully you will get treatment quickly or surgery. Sometimes they give chemo first. It's called neoadjunct therapy. I think having surgery first is much more common. My lumpectomy was pretty easy, the chemo was brutal. You might not need chemo, depends on what they find when they do the surgery. The Dr. that gave you the stupid pink beanie, might have jumped the gun. Yes, I agree, the timing was ridiculous. 

    This website is a lifesaver for many. We all "get it". Been there, living it. Anxiety can play havoc with your  body & mind. I waited until I was done with chemo & half way through radiation before I got meds. I should of asked sooner. Also, everyone reacts differently. Some ladies do breeze through chemo, continue to work & really are not very sick. 

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  • ChaosRains
    ChaosRains Member Posts: 132
    edited May 2014

    The doctors told me that it spreads so quickly that high mitotic rate so that just them doing the biopsy could have made it spread.   They want me to start chemo in 2 weeks... initial visit with oncologist is next wednesday, they want to finish all the necessary testing etc then and get me on chemo as soon as possible.... like the week after...

    I had not wanted to do chemo period, I'd rather have natural treatments, but they take awhile to work and the doctors are telling me that I dont have enough time to try them it is a do or die thing. I spent yesterday talking to doctors who are close family friends and have been for years so I know they wouldn't lie to me

    I'd had abnormal cell growth in 2004 that were beginning stages of cancer  in the same breast the cancer is in now, had to have a lumpectomy, go in for the quarterly screenings etc.  and everything was fine. Cancer free for 9 years 5 months   I thought that was what this was going to be too -- oh no problem they will cut it out and I'll be fine, but life always surprises you 

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  • wrenn
    wrenn Member Posts: 2,707
    edited May 2014

    Sorry you find yourself here but it is the best place for support and information. I had a grade 3 invasive IDC with metaplastic (rare) features....triple negative.  I didn't get surgery until two months after it was found and it hadn't grown in that time. I was only able to have 1 chemo treatment (more than 90 days after surgery due to complications) and then had it cancelled because I developed diverticulitis. 

    I saw the oncologist once after that and he said to see him in 6 months because everything looked good. He said there is a 70% chance it won't come back. I am banking on it.

    Please don't pressure yourself to "stay positive". It is unrealistic given what is happening. Have faith that you will be ok but allow yourself to feel crappy. :-)

    All the best to you.

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  • vbishop
    vbishop Member Posts: 616
    edited May 2014

    Chaos -

    Where are you in TX?  We have several ladies in Central Texas with our own little thread.  We call ourselves Hill Country Warriors. We even schedule get togethers.  We all have different diagnosis, different treatments, but we are very supportive of one another in all areas of our lives.  Yes, we chat cancer some, but most of our conversations are about other things.  That makes a huge difference.  It doesn't mean we won't talk cancer - of course we will because we are all still living it - but its okay to put cancer on the back burner and talk about other things.  FYI - it took me a good four or five months before cancer was not part of my everyday conversations. 

    Feel free to Private message me if you want more info about the Texas Hill Country Warriors or just have questions in general.  Sorry you had to join this little club, but we are here for you!!

    One last word:  The best advice I received was from a good work friend who told me not to borrow trouble but go with what you know.  Meaning, don't freak about what you read online.  Go with the information you KNOW as it pertains to you and ignore the generalities you find online.  This little piece of advice stopped several pity parties in their tracks!

    Hugs!

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  • ChaosRains
    ChaosRains Member Posts: 132
    edited May 2014

    VBishop, 

    I am actually about 45 min from Houston now in Sealy, TX - I say now because I just moved to Sealy in March from University Dr in RR which I saw you were from.    I miss RR already but I'm surrounded by family here so guess it is a good trade off!

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  • vbishop
    vbishop Member Posts: 616
    edited May 2014

    Chaos -

    Dang, girl!  You were literally just down the street!  I lived in Houston for several years so I know where Sealy is.  If the TX Hill Country group gets within 45 minutes of Sealy, I will send you a message to see if you want to join us.  I think we're getting ready to head to San Marcos, New Braunfels, or Gruene in early June to meet for lunch and then antiquing afterward.

    God works in mysterious ways, doesn't she?  It is so important to have a strong support system while you go through this, especially in the early stages.  What a wild ride!  And you think you only need the physical and emotional support early on.  Think again!  Just when you think the ride is over, something happens to get you back on the roller coaster.  I will tell you the first few months, post surgery, is still a bit nuts.  It's like waiting for the other shoe to drop.  Every new bump, skin discoloration, or unexplained pain gets scary.  I am still looking for my new normal.  I thought I found it...but I was wrong.  See...a twist in the road.  But one we will both come out on the other side of, dancing all the way :) 

    Hang in there, Chaos!  Let me or us (the thousands here that have been there done that) know if you need anything or just a safe place to rant!!


     

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  • juneping
    juneping Member Posts: 1,594
    edited May 2014

    chaos,

    i am so sorry about your dx. but really like your sense of humor from your first post....i think we need some postive elements in us to help us thru this storm.

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  • ChaosRains
    ChaosRains Member Posts: 132
    edited May 2014

    Vbishop, 

    You will definitely have to let me know if the Hill Country Group gets anywhere close to here... antiquing is one of my hobbies... I go to garage sales and thrift stores just looking for antiques.   My obsession of late has been the little demitasse cup and saucer sets... found three at a city wide garage sale a few weeks back as well as almost a complete set of antique china made in Germany you would have thought I'd won the lottery.  

    I don't know if you have ever been to the Antique Fair in Round Top, but I was born and raised in La Grange which is about 20 minutes from there and there are so many booths and vendors I never get to see everything!

    June, 

    I truly believe that your attitude has a major impact on your overall health.  I've always had that kind of quirky sense of humor and my family and friends were so upset that I wanted them to know I'm going to be okay... I'll joke my way through this because I'd rather be laughing than crying any day though I've had a few of those crying days too... when those happen I tell myself okay you have x amount of time to be upset then get out and do something! 

    I wrote a letter to cancer and I posted it to my facebook page because I am a nurturer by nature, I want to take care of everyone else and I was really upset that my friends and family were hurting, scared, etc.   I'd post it on here but I don't know what forum it would fit in

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  • Nettie1964
    Nettie1964 Member Posts: 759
    edited May 2014


    Chaos,

    If you want to post it here, I think it would fit, since this is technically a thread started by you and you can use it how you see fit!

    Sorry you have to join this club, but this is a great place for info!

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  • SweetMaggie
    SweetMaggie Member Posts: 18
    edited May 2014

    Hi ChaosRains -  Boy, you are are an inspiration for us "just diagnosed" gals and appreciate your humor, I totally need something to chuckle about too right now.  I hope my surgeon doesn't give me a welcome kit with a pink beanie at my consult on Friday... 

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  • ChaosRains
    ChaosRains Member Posts: 132
    edited May 2014

    Okay you guys here is the letter...

    Dear Cancer,

    I did not invite you in to my life, but now you are here...
    There are some things you should know...

    I am not weak
    I am not a quitter
    I will win this game!

    I'm forged from stronger stuff than that...
    You may take my hair
    You may try to bring me down
    There may be days that I think you are winning...

    BUT I'm stubborn I fight for what I believe in, I'll just dust myself off and get back up!

    You know that saying" I'm a lover not a fighter, but I'll fight for what I love"


    I love life, my husband, my children, my friends, my family. I love
    nature, the beach, ... (I could go on and on here You get the point I
    have a lot to fight for)

    So, let's get in the ring and
    tangle... it may be a hard fight you might knock me down a few times,
    but, cancer, eventually you will be left in the dust and I will emerge
    the victor.

    Guess you picked the wrong b*tch to mess with this time!

    I got this!

    ~Shan

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  • jesusiswithme1
    jesusiswithme1 Member Posts: 2
    edited May 2014

    I was recently diagnosed in February. It is a tough place to be. But I have read these message boards for hope and inspiration.  Take a deep breath as many have put it, it is a wild roller coaster ride. But so much depends on your inner strength. You must be positive in your thinking. Focus mentally on those things that make you feel good which some days will be very hard to do but you can!  Mainly , we have all been there and still are , you are not alone!  Most importantly whatever your spiritual beliefs are, lean on them!  God bless!

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  • jesusiswithme1
    jesusiswithme1 Member Posts: 2
    edited May 2014

    Sweet Maggie,

    I am not far from you at all. In fact in Chuck County!  Take care and God bless!

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  • vbishop
    vbishop Member Posts: 616
    edited May 2014

    Chaos -

    I love La Grange!  Lived there for a bit many years ago, you were probably just a little one. Do you know the Stevenson's?  Ken and Rosalie?  I worked for them over 30 years ago.  I was just thinking about them the other day.  I know exactly where Round Top is.  We used to go dancing there!

    Love your attitude, love your humor, love your letter to cancer.  I, too, use humor to help. I also started a blog (it helped my family and friends a lot - they knew exactly how I was doing emotionally - it opened the door for deeper conversations) so I can vent and just chat about what was going on.  Seriously, who wants to hear me chat about cancer 24/7?  But I needed to talk and my blog helped me do that.  I also have a list on my IPOD of songs that make me smile...and I make a point to listen to them every day.  It helps.  Just know that every now and then, it will all get to you.  And that's okay.  Have a pity party, cry, scream....then put on the big girl panties and move on.  Cancer does not define you and will not defeat you!!

    My one word...no two words...of advice.  Don't read too much on the internet - information out there is outdated, some doesn't apply to you and your specific case, and some is just flat out wrong.  If you're not careful, it can lead to a major pity party.  The very best advice I received in the early stages was .... don't borrow trouble by thinking about the what ifs and the possibilities.  Go with what you KNOW!  I repeated that phrase many times in my head when I started to head down a dark path.  Stopped many pity parties in their tracks!

    I will let you know when the Central Texas ladies head your way.  I will probably private message you the plan for June...just in case it is closer that we think.  Hang in there!!  Hope to meet some day!

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  • ChaosRains
    ChaosRains Member Posts: 132
    edited May 2014

    VBishop, 

    I do know the Stevensons! Did you work for them when their office was across from the public library by the river bridge? We lived up on the bluff (most of my family still does) and I remember riding around with my grandpa and stopping by when it was in that location... I know they also use to have an office off of the square somewhere too... La Grange will always have my heart there are just little to no job opportunities there at all, but all of my family is there so I go back to visit often!

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  • ChaosRains
    ChaosRains Member Posts: 132
    edited May 2014

    Maggie, 

    Here is to hoping you don't get that pink beanie either!  Just remember to breathe!  Hope everything goes well!

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  • vbishop
    vbishop Member Posts: 616
    edited May 2014

    Chaos -

    Yes, I worked in the store near the bridge in my early 20s.  They offered to send me to real estate school right before I moved to Houston with my now ex-husband. I regret not taking them up on their offer.  Real estate went through the roof right after I left because of the oil found on many properties in La Grange and surrounding towns.  Johnny Meyer was one of my good friends while I lived there, as well as Mike Pachal.  The Meyers lived on the bluff, so I assume you know them.  Actually, everyone in La Grange knows everyone else.....so of course you know the Meyers and the Pachals!   I loved my time in La Grange and love the town, even now.

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  • 238Faith
    238Faith Member Posts: 1
    edited August 2014

    New to the site....love the fight in your message! 

    The fact is we have received a diagnosis....the truth is we are healed fighters...destined to win!

    Be blessed...

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  • samiamaham
    samiamaham Member Posts: 8
    edited August 2014

    You made me laugh and I can't thank you enough for THAT.  I was just diagnosed on the evening of 8/21 with IDC, grade 2- but know little else as of now.  My first 2 days were a roller coaster ride from hell, now it's more like a scary elevator with unpredictable starts and stops....I can't get off, so I just have to endure the stomach drops and lurches until I get to the right floor.  How is your treatment plan going?

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  • ChaosRains
    ChaosRains Member Posts: 132
    edited September 2014

    Sam, 

    Treatment it going about half way through with chemo still have surgery and radiation somewhere in my future... some days are good and some days are bad... I've adopted a new mantra- bad days end too!

    So sorry to hear about your diagnosis... just remember to breathe :) you will find tons of wonderful supportive people on this site it has been a sanity saver for me! If I can help in any way don't hesitate to send me a message!

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  • PeggySull
    PeggySull Member Posts: 686
    edited September 2014

    Sam, everyone tends to feel the way you do when first diagnosed.  Once you have your doctors and a treatment plan in place, things will settle down some.  You will join different forums that fit your particular diagnosis and current treatment.   People are unbelievably generous with their time.  I relied on these forums every day.   I would have been much worse off without them!  I took some time off after treatment  but now I rely on forums that help switch diet, exercise, and other factors that can affect  recurrence.  Stay with your groups and you will be okay or as okay as one can be with this diagnosis!

    Hugs,

    Peggy

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