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Comments

  • ChaosRains
    ChaosRains Member Posts: 90

    Hey guys! 

    I had a bit of depressing news when I went for post red devil mammography last week... 2 New tumors reared their ugly heads, which I didn't think was possible while on chemo... onco specialist board met, so after one infusion of taxol I'm back on red devil for 3 remaining 3 infusions I was going to get to skip... which will make me reach my lifetime limit on it. Then back to the taxol.

    I was really depressed for a bit there, but have some how managed to dig myself out of that hole. So my cancer is stubborn... I'm way more stubborn! 

    Had infusion yesterday, neulasta today and its starting to kick my butt so better go take a nap 

    Hope everyone is doing well

  • rhgsr
    rhgsr Member Posts: 179

    Terri- id love more info on the BCRC happy hour. 

    Kelsey - wow!! Daddy daughter photo is amazing. Thank you for sharing that. 

    Chaos-  what!! Do they know why on the new tumors? I don't know what to say. I want to yell and scream for you. 

    Would anyone mind if I copy and pasted my blog post on here? I've done it a couple of times. It's easier for me to update that way then retyping everything. 

    Holli

  • shewolfpg
    shewolfpg Member Posts: 73

    First off I am so sorry to hear that Chaos. I can't imagine finding new tumors. I hope this new chemo or should I sat extra chemo kicks the cancer in its ass.  

    Holli I sat go for it. I would update more but I can never seem to find myself in front of the computer. Normally just on the phone. 

    Everyone else. Thanks for the comments on the photo.  There are more coming but I am waiting for the photographer to edit them and send them to me on a disk. I am excited on how they turn out. She posted a few on Facebook just so I could see some before my dad left. As for me I feel a little better give it time though. Next treatment coming up next week. I will be three cycles down. With one last cycle of the AC the 8th of Oct. Then Taxol will start. I also got to see the plastic surgeon but he doesn't want to commit to anything until all treatments are done.  Basically  a wasted trip. I already knew my options and what I wanted done. I guess I will just keep this extra skin all moisturized and prepped for the newer perkier boobs later down the road. 

  • keepthefaith
    keepthefaith Member Posts: 856

    chaos, I don't know what to say other than, keep on keepin' on! So sorry to hear that news, but better to know now than later. I hope you do okay through the extra TX's. I know I would be devastated, angry, etc, etc. 

    holli, copying your blog isn't a problem for me. HH is at the Speakeasy DT Austin on the 30th at 6:30..I think.  Ck out their website: www.bcrc.org for information. If anyone is going, please let me know. Maybe we can meet up. 

    Have a great week-end~

  • keepthefaith
    keepthefaith Member Posts: 856

    here you go jo

  • rhgsr
    rhgsr Member Posts: 179

    I'll share my "positive " post from this week first before I share my pity party one from last night :0) 

    Ugh... You can see in the picture how being on the steroids for 5 weeks now has puffed me up :0(

    ----------------

    I wanted to share this with y'all. If y'all remember, last October I had the privledge to attend the Women of Faith conference in San Antonio with 3 amazing ladies (there is a picture of us on this site. I have hair!) The timing was perfect as just 3 days later I received the mammogram results that changed my life (and my family's life) forever.

    Thank you Ronnie for encouraging me to go again this year to the Women of Joy Confetence. I feel as if I have come full circle in a sense.

    I was blessed to get to enjoy a girls weekend in San Antonio Texas with my 2 best girlfriends (two of the same 3 from last year and two of the most amazing women I know) at the Women of Joy Confetence. One of the speakers on Saturday was Margaret Feinberg. Little did I know that she was diagnosed with BC just a few months before myself. I love that God gives me what I need to hear when I need to hear it. She spoke about how God prunes us so that we may be better versions of ourselves. I always saw this as a painful process, but Ms. Feinberg explained it as a loving process. She actually went and spoke with vineyard keepers in Napa Valley (field trip anyone?). I encourage you to look into this more deeply. Our God is so amazing. Here is just one link I found (not associated with Feinberg) but again I encourage you to find what God wants you to see in this.

    http://www.gregstier.org/god-moments/what-i-learne...

    The final speaker on Sunday morning was an actress named Nancy Stafford (also a cancer survivor - skin). She talked about beauty (and she was truly physically beautiful) but not as man sees it but as God sees it.

    But The Lord said to Sammuel, Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things people look at. People look at the outward appearance, but The Lord looks at the heart.

    1 Samuel 16:7

    I can tell you that I have not been feeling very beautiful lately. Before this radiation pnuemonitis (as I have mentioned before) I was walking and had started to drop some of the weight and puffiness that the chemo and steroids used during chemo had put on me. But the worsening cough put an end to that. Lately I have been feeling so bad as I am still on high dose prednisone for my radiation pneumonitis (60mg going on 5 + weeks now ) and I'm starting to see it's effects (the steroids) on my body. I feel (and look like - without the purple tint) Violet from Willie Wonka and the Chocolate Factory (the original) when she turned into a blueberry. Thank you steroids!! I need to be rolled to the juicing room.

    Nancy Stafford (matlock, magnum PI) ended the conference. Her testimony was amazing. Again, exactly what I needed to hear at the moment I needed to hear it.

    Last year I attended the conference the weekend before I got my positive mammogram results and the theme was "Believe". That keep me "fed" through these past 11 months.

    This years the theme was "Beyond Beautiful".

    Next year the theme is "stronger ". I'm looking forward to next years confetence for sure!! I'm hoping these themes are mirroring my life :0)

    I have some updates on my lungs and surgeries but will be posting those in the next few days. I've had a few more set backs...

    Holli :0)

    http://www.assistnews.net/Stories/2011/s11090122.h...

    image

  • rmlulu
    rmlulu Member Posts: 1,501

    Hi y'all

    Kelsey - we will be looking for those pics :)))

    Chaos - gosh, no words GRRR :(((  so sorry is not enough..praying you find the strength for the additional treatments and receive answers to this new challenge...in your pocket {{{squeeze}}}

    Terri - did you walk?  Yeah, GS time :))) thanks for the info on BC team...changing teams is always difficult, but helps when others recommend:) so wanted to be there for a lap or to walk when the luminaries are shining bright and see your name...shine on:)

    Holli - :))) your post touches my heart...amazing how The Lord is speaking to you...manna. Hang in there the steroids are so difficult...give yourself time strong beautiful woman of God...you radiate LOVE!  

    Hillsong the Desert Song and Jason Gray Remind Me Who I Am 

    Vic - snap point and shout...georgetown triathlon today!

    Jen - rock it :)

    Why does everything you hope to do happen all on the same weekend?  Casting for Recover reunion retreat, Relay for Life Round Rock and Terri, dog obedience class begins, line dance social, and friends ask to stop by they're in the state....can't we spread it out so I can enjoy all of the above.  Hubby making slow progress...swelling and infection better but really grr.  Hope he's better before Oct Church Women's Retreat to the Coast...I'm so ready for a girls weekend energize and bask and recharge...:)))

    Shout out to all

    (((Hugs)))

    Cindy

  • jo1955
    jo1955 Member Posts: 7,545

    Hi ya'll.  New to this thread. Been around BCO for some time now.  Terri asked me to come join this group.

    I live in deep South Texas way down by Brownsville in the City of Donna.  Most people haven't heard of such a place.  Where I live we call it the Rio Grande Valley.  On occasion, hubby and I do travel to San Antonio and would love to meet up with some of you in the future.

    Hope no one minds if I just jump right in here. 

  • rhgsr
    rhgsr Member Posts: 179

    hi Jo1955!! I never like to "welcome" anyone to our group (for obvious reasons :0) .... But welcome 

    Thank you Cindy!!

    Here comes the pity party post from the other night ....

    -------------

    So I found out on Thursday that My surgery for the 26th has been cancelled until my lung gets better. Plus, being on the high dose steroids isn't conducive to wound healing. And according to my plastic surgeon, no anesthesiologist is going to want to touch me with a ten foot pole at this point. I figured this would be the case but I'm pretty bummed regardless. My plastic surgeon also agreed that the reason I had to stay in the hospital after the last procedure in July (which was supposed to be day surgery) was probably due to the radiation pnuemonitis - we just weren't aware of it yet.

    I know, I know.... There's a reason for it. I know things could always be worse. I know this is just a minor set back. Such a small drop in the bucket of this whole ordeal. But I'm tired... Maybe weary is a better word. And I hurt...

    http://dermnetnz.mobify.me/treatments/systemic-steroids.html

    I am in the high dose long term use at this point (40mg or above - I'm at 60- and longer than 3-4 weeks - I think I'm in week 5). The above link gives the MANY side effects of the long term steroids. They scare me. This week I've begun feeling aches ( pain actually) in my hips, joints, and legs. It happens mostly at night when I lay down for bed. Curiously, it feels similar to some of the Taxol chemo pain.

    I'm having pain in my right shoulder too ( the shoulder that has the least range of motion - where all the nodes were taken).

    I know I've mentioned the positive effects of physical therapy. Just another shout out to Physical Therapy of Wimberley. They are keeping me moving physically and mentally. I was all out of whack this morning and while I'm sore tonight, I'm thankful for all they (the entire staff) do.

    I really wanted to be done with all my surgeries by 2015. But it doesn't look like that's going to happen :0(. So I follow up with my radiation oncologist on the 30th. Barring any other set backs I am set to drop the steroids down to 40mg this Tuesday. That way I'm on them a week before I follow up with my RO (radiation oncologist). If I'm doing well, my understanding is I will stay on the 40 for a few weeks before gradually weaning down and eventually off them completely. But this has to be done slowly. The side effects of the corticosteroids are really brutal if you stop cold turkey.

    Anyway, sorry for being a little down tonight ... Especially after my post about my incredible faith filled weekend with my friends. Please continue to keep us in your prayers. Especially Ronnie (who has some health issues going on as well ... Hmmmm could it be stress?) and the kiddos.

    Thank you!! Love all the responses on here and emails and texts. As I've said before, they truly lift my spirits.

  • keepthefaith
    keepthefaith Member Posts: 856

    Jo, glad you found us! You are always welcome here.

    Holli, sorry you are having such a difficult time with everything. I hope things clear up for you soon and good news is on the way! Great photo.

    Have a great week ladies!

  • jo1955
    jo1955 Member Posts: 7,545

    Thanks keepthefaith and RHGSR for the welcome!

    RHGSR - I am so sorry to hear you are having to deal with all this crap.  Seems this BC journey for some of us is way too long.  Why does it have to be that way?   Seems totally unfair to me.  Sending big hugs.  ((((HUGS))))

  • rhgsr
    rhgsr Member Posts: 179

    ladies, I had to watch this video on stress for my health psychology class. I thoroughly enjoyed it and thought some of you might find it interesting. So thought I'd share :0)

    http://www.ted.com/talks/kelly_mcgonigal_how_to_make_stress_your_friend?language=en

  • Christisal
    Christisal Member Posts: 1

    Hi there! I am in in the piney woods area, huntsville!

  • keepthefaith
    keepthefaith Member Posts: 856

    Welcome Christisal! 

  • duckyb1
    duckyb1 Member Posts: 9,646

    Hi Ladies............I'm new here too..............HI JO................FK told me to check out this thread..........

    I'm not new to breast cancer........been doing this for 3 1/2 years..........I usually introduce myself by saying I"m the oldest, sexiest, prettiest, funniest person, and a member of the Mile High Club.......but since anyone who knows me....knows that........I will reframe from repeating it...............I know one thing for sure......you ladies are toddlers next to me........79 years old this past April............trust me, I'm not bragging.........LOL.........

    I am on many other threads, but heard this one is the place to be.........Hugs everyone..........

  • jo1955
    jo1955 Member Posts: 7,545

    Hey Ducky!  Think you can behave for once?  Love ya, you old broad.

  • duckyb1
    duckyb1 Member Posts: 9,646

    image

  • duckyb1
    duckyb1 Member Posts: 9,646

    image

  • rmlulu
    rmlulu Member Posts: 1,501

    Hi Y'all

    Jo & Christia & Ducky - welcome!

    Christia - update your profile as your path data comes in...sorry you qualify to join the club, but glad you are here.

    Holli - ok, stress is my friend...now I want a bug HUG!  Pity parties are ok...we all have them...we all get back up and put on those very tight tongs...big girl panties :))) here's to better days soon!

    Chaos - fingers&toes crossed thinking of you and sending good vibes...give us an update when you can...yizer a rough go...xo

    Terri - did you gear up as you took your lap...:)))

    Kelsey - how are you feeling...waiting on more pics!

    Jen - our busy bee

    Vic - flash selfie time!

    We need to all meet up for a late breakfast...anyone game?...or trick and treat in pink tuttus and pink boxing gloves and pink hair!   

    Beginning to make holiday plans...anyone want to lay odds that pup will fit in a series 400 kennel?  43# at 4 mos and that will be 6 mos...guess I would limit his eating, but he's got just the sweetest eyes...bow wow.

    (((Hugs)))

    Cindy

  • keepthefaith
    keepthefaith Member Posts: 856

    Cindy, you're funny! Yeah, I am always game for brunch! Someone plan it. I didn't get any takers for Gruene, so maybe it was too far...or just bad timing. Post some more pics of the fur baby.

    Welcome, newbies! I hope we can meet you sometime soon~

  • shewolfpg
    shewolfpg Member Posts: 73

    Just finished round 3 of chemo yesterday so the bone pain should be hitting tomorrow or the next day.  It isn't as bad now that I take the Claritin and ibuprophen.  But still bad.  Just got pictures back today in fact so I can add them on here now.  http://www.meganbette.smugmug.com/ is where they are at.  If you scroll to the bottom there is a folder Kelsey password is fighter

    I would upload them on here but they aren't saved on my computer yet.

    As for hair loss the stubble of my hair is falling out pretty quickly now.  I washed my head the other day and my poor hands looked like my hands looks like it grew hair.  So soon it will be smooth bald. I do miss having my daddy around as well. I know he had to go back home and take care of my mommy.  She and my dad missed each other.  The 7 plus weeks he spent with me was the longest he and my mom had been apart in 37 years.  It was really hard to go to chemo yesterday with out having him there to sit and talk with me.  But I made it.

    That's about all.

     

  • rhgsr
    rhgsr Member Posts: 179

    I wanted to share this with you ladies. The difference between empathy and sympathy. I had so many people tell me the "at least..." 

    This is a good one.

    http://m.youtube.com/watch?v=1Evwgu369Jw

  • vbishop
    vbishop Member Posts: 332

    The past week has been a rough one for me, mentally anyway.  Sorry, Terri - I just couldn't handle being around a lot of cancer patients last weekend.  I wanted to.....but struggling.  Getting better, NED so far, but still working through the mad of having cancer.   Here's my blog post from last week that, hopefully, explains things. Considering what some of you are going through now, my little pity party seems so self centered:

    Bishop, pity party for one…..

                  
    It’s been a year since my diagnosis, a life changing experience for
    sure.  I had a diagnostic mammogram on Monday, then my one year visit
    with my oncologist for a boob check and blood work on Friday.  The
    mammogram is clean (Yay!) and I will only hear from Dr. Kocs on Monday
    if the blood work shows anything out of whack.  Here’s hoping for no
    phone call!

    So why the pity party?  Because cancer sucks.  Period!  I had several
    questions for Dr. Kocs on things I had read or heard from others,
    hoping Dr. Kocs would put a more positive spin on things.  Dr. Kocs,
    being the straight shooter that he is, confirmed everything I had read
    and heard.  AND IT SUCKS!!

    Here’s what we discussed:

    • The diagnostic mammogram was for my benefit only (I wanted one
      because of the close margin).  The odds of a LOCAL recurrence are
      practically nil since I had a bi-lateral mastectomy.  It’s possible but
      highly unlikely.  I heard this from the gal who did the diagnostic
      mammogram.  Dr. Kocs confirmed.  So…no more mammograms for me. 
    • The blood work I will get every six months for the next three years 
      is an entire blood panel, looking at all functions of my body and
      watching for anything different.  If anything changes from one set of
      blood work to another, then I go in for the appropriate scan.  Which
      scan is dependent on what appears to be out of whack.
    • Unlike IDC, ILC (my cancer) metastasizes wherever it damn well
      pleases (bone, brain, liver, lung, stomach, colon, ovaries, uterus,
      pancreas, kidneys); wherever it finds a weakness.  Great! 
    • If my cancer metastasizes, I will go from a stage 1 to a stage 4. 
      Although my overall odds are still good that it won’t recur, 30% of
      women with stage 1 breast cancer DO metastasize.  Of those, the average
      life span is 3 years.
    • Getting off of my meds is NOT an option, even if I have significant
      bone loss.  We treat the bone loss - there are shots and other medicine I
      can take, along with diet and exercise.  My hormone suppressant is my
      ONLY line of defense against a recurrence.

    So…bottom line, I am spending the rest of my life waiting for the
    other shoe to drop.  I will still need to visit my docs for every little
    ache, every little pain, a cough that lingers, etc.  Rolling my eyes at
    that!  I am the “annual well-woman check up chick”…that’s it!  Until
    now, anyway.  Sigh!

    Dr. Kocs says that this stage is the hardest part; the mental part. 
    The diagnosis is done, initial treatment complete.  Now we’re in wait
    and see mode.  I have to live my life as if cancer is not front and
    center in my head.  I long for the day when I don’t think about cancer,
    but I’m not there yet.  Dr. Kocs says it takes time. For some, it can
    take years. Years?!  Now you know why I’m having a pity party for one? 
    Cancer sucks, no matter how you slice and dice it.  It sucks! 

    I am still far luckier than most.  I worry about the younger women,
    especially those with little ones.  And there are far too many of them! 
    It breaks my heart!

    I need to wake up each day, thank God that I’m still here, and live
    each day to the fullest!  Its time I put on my big girl panties (the
    lacy ones) and push the pity party to the curb!

    Fingers crossed that I DON’T talk to my favorite nurse, Stephanie, on Monday!


     

  • rhgsr
    rhgsr Member Posts: 179

    Vbishop - don't invalidate your feelings. I believe we have all had these feelings. As perverse as this may sound.... Reading your blog post gave me comfort knowing that I'm not alone in feeling the same as you. I met several ladies that are stage IV recently. And yes, things could always be worse in that sense. But we can't compare ourselves to each other in that way or feel bad for feeling bad or down. Just like you said... Cancer sucks period.

    I could be hit by a bus tomorrow. We don't know when or how our time is up. We just keep fighting and loving and living for as long as we can. 

    Sending you love and hugs

    Holli

    PS- I would love to share your blog post on my blog if it is ok with you. I won't use any names.  If not, no worries. 

  • vbishop
    vbishop Member Posts: 332


    Thanks, Holli -

    I hate being Debbie Downer here, but it not here, then where?  I read  a post today from a woman whose life fell apart when her mother was diagnosed.  And every year on the anniversary of the diagnosis, she would stop by bc.org and post.  Year 6 comes and goes....and both Mom and daughter forget that it is the 6th year anniversary of her diagnosis.  It gives me hope that cancer will not be front and center some day....and I long for that day.  Thanks for validating that I'm not the only one feeling this way...it just isn't talked about much.

    You are welcome to share my post or even the my blog.  I'm an open book.

    Hugs!

  • jwoo
    jwoo Member Posts: 931

    Welcome to our thread Jo, Christisal, and Ducky!

    Chaos- sending you lots of love and healing thoughts. I am very sorry that this is happening to you, and hope that they can find the best treatment path for you. 

    Vicky and Holli- ((((hugs))))) I think we all feel the same(in the same Sh*tty boat.) Cancer is a jerk. and you should vent here where we can support you. 

    cancer is front and center in my mind from the time i wake up till i finally fall asleep. i hope that it subsides as the years go by, but, with every ache and pain, or illness- that is always my first worry. i think it always will be. 

    Holli- any new news on your lungs?

    Cindy- can't believe your pup is getting so big already!

    Shewolf- if feels so much better once all the hair is out. At least it did for me. And I have a good friend who does henna, and that felt wonderful, so if you can, do it. 

    Terri- i think Gruene was just bad timing, at least it was for me. 

    But we should try to get together soon! what does 10/19/14 look like for everyone? brunch somewhere?

    Went canoeing with my love for his bday on tuesday. His grandfather gave us an amazing canoe last year, and this was the first time we've been able to take it out. was a really gorgeous day!:

    image

    image

    my le has been a real pain still, and i am terrible at flamenco, but i will keep going!

    Also- pardon the expression, but i have been bleeding like a stuck pig all week- out of no where. First period i have had since last June, and it is painful and scared me. My onc said i should not worry too much, as it is normal for the first one you get after so long to be really heavy, but my gyn wants me to come in just to get checked out.  Hoping that it isn't anything, or at least nothing more than my PCOS acting up. Fingers crossed. 

    where is everyone else? how are you all doing?

    i think of all of you every day and am so thankful that i have had the opportunity to meet so many amazing ladies in my lifetime. 

    xo- jeni

  • vbishop
    vbishop Member Posts: 332

    Jen!!!!

    It is always so great to hear from you.  Let me check my calendar but I so need to be near you ladies right now! 

     I recommended our group to another women recently diagnosed with ILC.  And she will be going to S&W in Temple.  She may have questions for you about the docs there.  I told her that if you were pleased, then I am confident that she will have a great team.

    Love the pics and the canoe! 

     I was thinking a B and B in Bastrop, near the river, for our Spring or Fall get together in 2015.  Or Burnett - Hubby and I are going to a large log cabin on the river in early November.  It's right on the water, has hiking trails, etc.  If there is one big enough, it may be perfect for our little get together.  I mean, we need to have a slumber party!  It has to be big enough for a slumber party!

    Good luck on the obgyn appt.  Hope the LE gives you a break every now and then!

  • keepthefaith
    keepthefaith Member Posts: 856

    vicki, no worries here. Congratulations on one year! You have the right to be pissed and to vent. I feel your pain. I too, feel a void and sometimes wonder if I am depressed...I really think it's pretty normal given all we have gone through this past year.  My infusion nurse told me "we all have our own battles"....no need to compare yourself to others. I think it's hard to find the delicate balance of being aware and being scared! 

    jen, great pics! Thanks for posting. I hope your upcoming appt goes well. 

    holli, I hope your lungs heal soon! 

    kelsey, you're almost there! 

    I meet with my RO tomorrow for post mammo follow up.....and MO has convinced me that I need to get a colonoscopy,  which is only 9 yrs overdue! So, I will get that done before the end of the year. I'll be getting the 3D mammo in 6 months. 

    The 19th of October would be good for me. If any of you are interested in reading, I have several books relating to  BC/cancer  that I can bring,  if we get together.  

    Anyone following Joan Lundens' story? 

    ((HUGS))

    Terri

  • vbishop
    vbishop Member Posts: 332


    The 19th is good for me too!  I need a TX Hill Country Warrior brunch

    Terri - good luck with your appt. tomorrow!  And do get the colonoscopy - some studies suggest a correlation between BC and colon cancer.  Oh hell, it seems all cancers are related if you read the right report.

    I just got the People magazine and read her story.  I didn't realize she had 7 children....7! 

    Some of the information in the article I think is incorrect (like chemo pre-surgery is going against the norm - not from I can tell from these boards!). 

  • rmlulu
    rmlulu Member Posts: 1,501

    Hi Y'all. 10/19 works!  Will ask to carpool if south of 1431...1 car family

    Vic - so understand the pity party and shouting out this all €##£#!  Have had a hard time adjusting to the AI issues and now Zometa and how much supplements to make this all work.  MO said micromets and less than ideal chest margin means pop a pill and counter SEs for...:( I know that I should be gratefull but it does feel like dancing with a sword swinging over our heads...

    Holli - empathy...thinking of Job...just come sit with me

    Jen - beautiful pics of you and luv...hope the LE gets better and controlled 

    Terri - will have to sneak off to HEB and ready the magazine...hum sometimes chemo is given before to shrink the tumor...squash the c in nodes....gosh so much depends on pathology and BC team

    Kelsey & Chaos - fingers&toes crossed...sending strength and peaceful days of restoration

    Hubby's infection getting bad again...puppy was a disaster in school yesterday...too distracted....need to run him hard before class so he goes tired and not ramped up to play...looking forward to church retreat 10/11 to the coast...poor hubby.

    Off for a walk...heel bow wow.

    (((Hugs)))

    Cindy

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