Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

I know I cant be the only lesbian out here?

Options
1679111237

Comments

  • navygirl
    navygirl Member Posts: 369
    edited June 2010
    Options

    WOW worried gal - I'm so sorry you have all this going on and on top of that you're trying to deal alone. What part of the country are you in? Maybe you can find some support through here or the hospital where you're being treated? I'm not familiar with any of the benefit issues, but I do know there are links here somewhere that you might be able to get some help financially. Welcome to our group...we'll do what we can to help you through this mess. (((hugs)))

  • JustJean
    JustJean Member Posts: 170
    edited June 2010
    Options

    Hello Worried....

    I wrote this really long post answering your post a couple of days ago but it never showed up... I'm 54 with a gf in another state and a 15 year old son. I am fortunate to have a job and am just praying that my chemo goes well enough that I can keep working because I am now totally out of sick and vacation time. I also pray that I'll have enough brains to keep doing my job so I can KEEP my job.

    I've never experienced pain with any of my breast issues.... microcalcifications, lesions, tumors... until the tests/surgeries to deal with them. I don't know if that's normal or not but that's how I was.

    Are you getting care through the VA? I ask this because I have some experience with this. I spent four years in the Navy back in the 70's and when I found myself employed through a temp agency with no medical benefits after moving here to take care of my mother, someone told me to apply for VA benefits. Since I had no insurance at all, all of my care (such that it was) was free, except for the small copay each month for the meds. Once I got my current job, they billed my insurance but never asked me for the remainder of what the bill was. I switched my care over to the Cleveland Clinic as soon as I could. I know that lots of people think that the VA gives great care but that was not really my experience - although if I had known then what I know now it may have been different.

    The good news is that you are not alone here. I wish I had found this resource back in 2005 when I had my first experience with bc. I've been reading and reading and reading for months now but just recently joined and started to post.

    I am starting chemo in two weeks. 8 rounds of AC every two weeks followed by 8 rounds of T every two weeks followed by 5 weeks of rads followed by 5 years of some AI. They are being this aggressive because I had no lymph nodes to check because they had been taken out from the first surgery. Those missing lymph nodes have caused me all manner of hassle - can't get an Oncotype test either because node status is unknown. The thought of all of this makes me nauseous, quite frankly, just thinking about it. Terrified doesn't even seem to be an adequate word for it. How am I going to work? How am I going to take care of my son? How am I going to get to chemo treatments? How much sh*t is my boss going to give me because HR is going to tell him that I have to have flex time? He dislikes me already and this news hasn't made him any more pleasant to deal with. How sick am I going to be? How many SE's will I get and how bad will they be and how long will they last? The questions are unanswerable but go on and on through my head. This whole thing sucks.

    I know I wrote more the other day but can't remember what else I said so will sign off for now.

    Just keep writing - this community seems to be one of the best places for people who understand what you're going through, particularly about being lesbian.

    JJ

  • bookart
    bookart Member Posts: 210
    edited June 2010
    Options

    WorriedGirl - what I've heard is that benign cysts hurt (mine did) but that bc doesn't.  I have heard that sometimes breasts will itch, but I don't think there has been a blind study - maybe women without bc have itchy breasts, too.  My fibrocystic side is NOT the side I got bc in.

    Definitely try to find a support of some sort - you, too, JJ!  My coworkers, ex-coworkers, friends, colleagues, family, nurses, bc.org - these all helped me and still do.  We have several centers here that have helped with free or low-cost therapy, massages, etc.  Help is out there.  And JJ, don't discount the impact this has on your 15 yo  - mine ended up in psych ward, suspended from school and eventually arrested for possession.  He's finally getting a handle on it, but my bc drove him deeper into depression and acting out.

    The chicas here at bco help me every day.  Thank you so very much, all of you!

    Elaine

  • cancersucks
    cancersucks Member Posts: 100
    edited October 2010
    Options

    Hi all. I blantantly stole this info fom another sister, who was helping out another sister so I do not think she will mind.

    Worried! Sorry you are going through this alone. At least you have us. Breastcancer.org has been my savoir. The women on it are simply incredible. Please reach out to some of the support groups in your area, as Bookart also stated, you should be able to find them through the hospital. or your oncologist. Here is some info that I hope helps.

    The U.S. Department of Health and Human Services (HHS) launched a new online tool that "will help consumers take control of their healthcare by connecting them to new information and resources that will help them access quality, affordable health care coverage. Called for by the Affordable Care Act, http://www.healthcare.gov/  is the first website to provide consumers with both public and private health coverage options tailored specifically for their needs in a single, easy-to-use tool."

    Under the new law, people who have been denied coverage due to a pre-existing condition and who have been uninsured for at least six months may qualify to buy insurance. Read about the Pre-Existing Condition Insurance Plan (PCIP); then use the PCIP Map to learn more about how the program works in your state.Premiums will vary depending on the state you live in. (But as an example, if you live in a state where the U.S. Department of Health and Human Services provides coverage, the premium for an age 50 year old enrollee may range between $320 and $570, depending on state of residence. For an estimated premium range for your state, go to that state on the website map below.)

    While you can apply for the U.S. Department of Health and Human Services run Pre-Existing Condition Insurance Plan today, the premium rates won't be officially available until July 15. If you apply before July 15, and are determined to be eligible for enrollment you will be notified by mail of the premium. Then, you'll send in your payment to finalize your enrollment in the Pre-Existing Condition Insurance Plan.

    Just Jean, have you explored the family medical leave act?  I had to dig into most of my saving just to survive going through treatment, this is not an easy road to tow. Good luck. I hope both of you ladies keep checking in. Actually, I hope everyone keeps checking in and keeps this thread alive We're all here to help and support one another. I promise I will not sing Kum by yah!!!!!!

    Chainz my friend, where are you and how are you?

    Navygirl, Bookart, how are you? Just wanted to say hello to everyone. We're having a heatwave here in Massachusetts, how about you ladies, everyone staying cool?

  • navygirl
    navygirl Member Posts: 369
    edited July 2010
    Options

    Good information there Cancer, I hope it helps! 

    I've been laying low, it's too hot to keep the laptop on my lap :) We're in the same heatwave you are and it's crazy! I'm very fortunate that I have an awesome boss, she let me tele-work the past 2 afternoons so that I could be home to run the A/C for my pets. I live in an old house and it has window units, not central air, which I don't like to leave running if I'm not home. We're hoping we'll get a bit of a break tomorrow...I am so ready for fall and we're not even half way through July. Ugh.

    Tomorrow I have a 3 month check up, I'm debating how much info to give my onc as she tends to run too many tests as far as I am concerned! Back pain, shoulder pain, fatigue...basically all the same stuff I had problems with on the Arimidex minus the raging headaches. So far, I can deal as long as I don't run out of darvocet :)

    I only have 9 days left in this ankle boot, and then HOPEFULLY I will be free to start using my new ankle. I'm getting so antsy to be able to golf and bike again. I tried to golf on Friday, but there really is no way to compensate your swing when you have this knee high boot on! Ahhh, but it was a beautiful day to be on the course anyway.

    A big shout out to our newest member, Jean; it's always extra nice to "meet" someone who's former Navy as well!!

    Everyone else, as Cancer said, stop by and let us know how your summer is going....

    (((hugs))) 

  • GML
    GML Member Posts: 46
    edited July 2010
    Options

    Worried...I had no pain in my mass.  It felt "creepy" to feel it, but it didn't hurt.  Hopefully you have more answers by now and they are good ones...

    JustJean...I feel for you....I had alot of those questions floating through my head as well...worried about time off, etc.  I remember thinking, "I have to hurry up and get this over with so I can get back to work".  6 1/2 months later I returned to work.  Some people do amazingly well on the chemo.  I know people who worked while they were getting it, same for radiation.  Some people don't do so well on it (I didn't).  There are a lot of side effects and unfortunately you won't know what they are for you until you are getting the treatment.  In terms of work, as CS said, check out the family medical leave act.  And as Elaine said....get support from wherever you can.  It is very helpful but all in all, both me and my partner felt it was still a lonely process despite the support.  Can't really describe it and don't know if anyone else felt the same....

    Hotter than Hades here as well in Central New York ladies...I like the heat but this is hot. Navy, I don't envy you with an ankle boot on in this heat.  Yay that it is coming off soon.  

    Summer is going good and only one a half more weeks until Ptown! 

    GML

  • navygirl
    navygirl Member Posts: 369
    edited July 2010
    Options

    I want to go to Ptown!!!!!!!!!!

  • haltsaluteatx
    haltsaluteatx Member Posts: 25
    edited July 2010
    Options

    Ditto Navygirl. We used to go for women's week but now with our child we usually go for a few days during family week. We were in DC 2 weeks ago and dang it was hot. I couldn't wait to get home to the beach. This is an unusual heat wave for us in New England for this time of year, 

    Stay cool and hydrated everyone. 

  • chainsawz
    chainsawz Member Posts: 113
    edited July 2010
    Options

    P-town...I am so jealous GML!!  I went camping up in the mountains and then up to see my kids in Santa Fe, NM.....now I am back in the desert oven....bleck!  My mailbox is under a tree and when my gf brought in the mail this evening it was really hot.  Paper should just not get that hot...LOL!!   Sorry to hear the rest of you on the East Coast are getting the heat....I hope it cools off soon for you all.  It'll cool off here in October...sigh.  You know it's summer in Tucson when you get a hot shower and only the cold water is turned on :>

    Navy - congrats on getting the boot off and back to your activities! 

    CS -  we'll let ya sing kum by yah as long as you do it like the Indigo Girls...LOL!!! 

  • cancersucks
    cancersucks Member Posts: 100
    edited July 2010
    Options

    okay, I must do it, I know this makes me so increidbly gay but this is my favorite song by Indigo girls, it's all about the words and the guitar compliments it all the way through. Let's all sing it together shall we. (ahem)

    There's a letter on the desktop
    that i dug out of a drawer
    the last truce we ever came to
    in our adolescent war
    and i start to feel the fever
    from the warm air through the screen
    you come regular like seasons
    shadowing my dreams
    and the mississippi's mighty
    but it starts in minnesota
    at a place that you could walk across
    with five steps down
    and I guess that's how you started
    like a pinprick to my heart
    but at this point you rush right through me
    and i start to drown
    and there's not enough room
    in this world for my pain
    signals cross and love gets lost
    and time passed makes it plain
    of all my demon spirits
    i need you the most
    i'm in love with your ghost
    i'm in love with your ghost
    dark and dangerous like a secret
    that gets whispered in a hush
    (don't tell a soul)
    when i wake the things i dreamt about you
    last night make me blush
    (don't tell a soul)
    and you kiss me like a lover
    then you sting me like a viper
    i go follow to the river
    play your memory like a piper
    and i feel it like a sickness
    how this love is killing me
    i'd walk into the fingers
    of your fire willingly
    and dance the edge of sanity
    i've never been this close
    i'm in love with your ghost
    unknowing captor
    you never know how much you
    pierce my spirit
    but i can't touch you
    can you hear it
    a cry to be free
    oh i'm forever under lock and key
    as you pass through me
    now i see your face before me
    i would launch a thousand ships
    to bring your heart back to my island
    as the sand beneath me slips
    as i burn up in your presence
    and i know now how it feels
    to be weakened like achilles
    with you always at my heels
    this bitter pill i swallow
    is the silence that i keep
    it poisons me i can't swim free
    the river is too deep
    though i'm baptized by your touch
    i am no worse than most
    in love with your ghost
    you are shadowing my dreams
    (in love with your ghost)
    (in love with your ghost)
    (in love with your ghost)

  • chainsawz
    chainsawz Member Posts: 113
    edited July 2010
    Options

    They write such awesome lyrics and that's a good one CS!!  One of my favorites is "closer to fine"

    I'm trying to tell you something about my life
    Maybe give me insight between black and white
    The best thing you've ever done for me
    Is to help me take my life less seriously, it's only life after all

  • JustJean
    JustJean Member Posts: 170
    edited July 2010
    Options

    Thanks for the nice welcome, everyone. I've been reading your words and it's about time that I joined in the conversation.

    I went to a large women's music festival (Sister Singers Network) in Chicago last week and then started chemo two days after I got home. It did not go as well as I had hoped. My onc wanted to try using IV's for the treatments and not have to put a port in. Well... the first IV didn't draw back any blood, so my nurse got the head of her dept in who put in an IV with a butterfly needle and got good blood return but as soon as the nurse starting pushing the A in there it burned so she immediately stopped. Then they got the head of the lab to come over and put in a THIRD IV line. This one they said was a gusher but about ten seconds into the pushing I got a sharp pain and a burning sensation in my upper arm. Stopped again. After some discussion, where I pretty much said that I was NOT accepting that there was nothing that could be done that day, they called in the PICC team who ended up putting a midline running from above my elbow up into a large vein in my armpit. That allowed the A to be pushed without any problem, and they pulled it out when done with it.

    So now, in two weeks, I get to spend a reallllllllllllllllllly long day at the hospital - first thing in the morning they'll start the process of putting a port into my chest and then chemo later in the afternoon. I was really  hoping to avoid a port but I had to agree that given the circumstances it was the only logical thing to do. I'll wear my bra and prothesis so they can know where to NOT put it (I've read about other women who have their ports under their bra straps and how uncomfortable that is), and I'll make sure that they know that even over two months later that my mastectomy areas are still swollen and tenderr.

    I was on FMLA leave for the two months that I was out. I came back to work this week, totally out of vacation and sick time. After a discussion with HR, the decision was made to allow me flex time (unheard of where I work) because it's the only income I have. My boss is still not happy with it and my coworkers are really being awful about it, like I got breast cancer on purpose so I could get flex time? Good grief... so Monday was a holiday, I had my chemo on Wednesday, and I came in early and worked late the other three days and STILL have to work two hours tomorrow to get my 40 hours in. I sure hope I can keep this up. This is day three of my first cycle, I was more tired and spacey today and I was working slower than normally and having to think about tasks that have been routine for me to do for years - how frustrating! Anyway, the flex time will help save the four weeks of FMLA I have left.

    There was a counselor at the hospital who came by to see me and she gave me some paperwork to fill out to ask for financial help with copays and such. I got a paycheck today that was less than half of the 80 hours it should have been because 43.15 hours of it was unpaid.

    This whole thing really sucks. I'm already exhausted and it's only week one of 16! Fortunately, my next chemo is on a Thursday so I'll do my best to get in as many extra hours before then that I can and maybe my worst days will be on the weekends and I can still work.

    JJ, thankful that you are all here to listen to me say things that I can't say to most people in real life...

  • navygirl
    navygirl Member Posts: 369
    edited July 2010
    Options

    cancer...you are sooooo gay! :)   LMFAO

    now to finish reading... 

  • navygirl
    navygirl Member Posts: 369
    edited July 2010
    Options

    JJ...I feel your pain, I know it seems like a huge mountain when you're only on 1 of 16, but it will go by fast. As far as your plan to balance work and chemo, I think you'll find it mostly works. I went into mine that way - working as much as I could Mon-Wed, chemo on Thursday...Friday work sometimes/sometimes not...in bed most of the weekend but able to get back up for Monday. It all runs together after a few weeks. Which, really, I think helps it go by faster. I hope your work continues to work with you...and you always have us to listen to for those things you can't say to others in real life :)

    I hope everyone is having just as a relaxing weekend as I am right about now!

    (((hugs))) 

  • JustJean
    JustJean Member Posts: 170
    edited July 2010
    Options

    Yeah, it does seem like a mountain right now.

    I was planning on being out of the house by 9 this morning, run a couple errands, go to work for a couple of hours, and have lunch with my sister. I couldn't seem to make myself wake up enough to even get out of bed until almost 9:30 and even coffee didn't help. Left at 11, did a couple of errands, had lunch with sister, worked my two hours, went to the grocery store, came home and put groceries away and then hit the wall. Went to bed and had a four hour nap... and I'd probably still be there if I hadn't had to get up to pee. So it appears that days 3 and 4 are going to be the worst (I hope) for me and that it will work out ok to have the chemo on Thursdays - then the bad days are on the weekends and I don't have to worry about having to go to work.

    I'm pretty down about all this today. One of those days... I think it just might be time to go back to bed, this time for the night. I got up long enough to pee and get something to eat and now I can tell my eyelids are shutting. I can see that the upcoming months are not going to be what I would call a good quality of life.

    ...sigh...

    JJ

  • bookart
    bookart Member Posts: 210
    edited July 2010
    Options

    Hey, everybody!  We have great rain here in TX, but even though the temp is down, the humidity makes it feel like 100 degrees, so it's six of one, half dozen of the other.  My lymphedema swelling is worse in this weather, that's for sure.  I wear a compresson garment, so that makes it even hotter.  That's my whine for the moment - anyone want some cheese with that? 

    Cancer - my partner is a huge IG fan - she would love your post.  We saw them in concert a number of years ago - they are truly amazing.  Navy - glad to hear about your boot coming off - that's got to be a relief. 

    I have only had a "real" job with insurance for the last five years, and I've never been so glad as this past year.  I had almost 300 hours of sick time, and my cash outlay was only about $3000, which I've mostly been able to pay as the bills have come in.  It makes an incredible difference.  I hate the medical/insurance industry - I would rather have reasonably priced medical care rather than have to have insurance, but that's not going to happen in our country, and so I'm really grateful that I've had insurance this time.  I know that makes me a boring suburbanite...

  • BonoboGirrl
    BonoboGirrl Member Posts: 104
    edited July 2010
    Options

    Just wanted to drop by and say "hello" to you wonderful ladies. I openly identify as bisexual (and no, not the curious kind--when I'm with a woman, I'm with a woman.), so I hope that I'm welcome despite this.  If the forum is strictly open to women who strictly identify lesbians, I'd understand. Peace.

  • navygirl
    navygirl Member Posts: 369
    edited July 2010
    Options

    Hi Anne...as far as I'm concerned...you qualify for membership :)

    I can't believe it's Monday already, I should have checked my lottery ticket this morning - I'm sure I was the jackpot winner and I should be calling in rich! I've come to the conclusion that if I feel 80 at 40, then by the time I'm old enough to retire I might be achy enough to not enjoy it. I think we should get our "retirement" between 40 and 55, kinda like a mid-life recess, then come back to work.

    bookart...I had to laugh when I read your "boring suburbanite" comment...I felt my morphing was complete when I bought my outback stationwagon so that I could better manage getting my bike and my dogs in the car. I had a Jeep Liberty, and while I loved my "truck" (it drove more like a truck than a jeep) the back tailgate was so high, that getting two bikes in the back was often a hassle and my oldest dog and smallest dogs had to be picked up to be put in. Not good for the lower back!

    JJ...I know it can be very depressing when you feel like you should be up and doing things, but just can't muster the energy or brain space to do it. I'll keep reminding you that you just have to let it all go for now, and rest as much as you need. We have 3 dogs, 2 cats and 2 birds in my house. I am OCD to begin with, so add that many pets to the picture and there is something that has to be cleaned every day. The vacuuming is something that can't be ignored for more than 1/2 a day before you KNOW it needs to be done...but when I was in my first year of treatment, we were lucky to get cleaning done once a week unless friends came over to help (which, God bless the ones who did). I wasn't capable, and my girl had enough to handle with me, the feeding schedule and keeping up with the "business" end of cleaning up after all those pets.-never mind the house cleaning. I really had to just tell myself, no ones going to die if I don't run the vacuum, dust, wash, or steam clean anything. The upcoming months are not going to be a good quality of life...you'll miss out on some gatherings, sleep through some events, be too tired to give a crap about most things...but the treatment does end. Once you get over the PTSD from it all, you'll notice you have more energy for the fun things again. It's taken me almost 2 years from diagnosis to now, and I've just gotten back in the swing of things the past few months. Hold on, the ride will be over soon enough. If you need to vent, get advice, counsel or encouragement...just let us know -we'll do our best to help you hold your head above water until you are back on your feet :)

    Ugh...I gotta get going in a few minutes...I hope our week goes fast because my weekend wasn't long enough!!!

    (((Hugs)))

  • zueoo7
    zueoo7 Member Posts: 3
    edited July 2010
    Options

    We need to talk to each other!!!!!!!!!!  Our experiences are diffrent  then the all the stuff out there If we don't support each other who will??

  • JustJean
    JustJean Member Posts: 170
    edited July 2010
    Options

    Another tough day for me. Tomorrow is one week past my first chemo - shouldn't I be getting better every day? I'm exhausted, I worked yesterday and today and last night went right to bed and slept all night as soon as I got home. My taste buds are off. I'm weak and dizzy and wobbly on my feet and feel like I'm 88 and not 54. I forgot  HOW TO OPERATE THE COPY MACHINE today. WTF????? My chest wall muscles are spasming like crazy now that I've gone back to work and have to do computer stuff. I don't want to talk to anyone, email anyone, and feel like I should break up with my gf because it's just not fair for her to have to put up with ME and THIS for god knows how long. I'm not concerned about vacuuming (or any house cleaning for that matter) because I can barely clean out the litter box for my three cats.

    If I am this bad now, what am I going to be like in another month? Two months? Four months?

    If I had the energy, I'd cry. For a long time. Instead it's looking like another day of work/grab something to eat on the way home/eat/go to bed. This is no life.

    Sorry... just another bad day here. I'm going to talk to that counselor about getting some psychological help because even *I* don't want anything to do with me, so how can I expect anyone else to?

    JJ :(

  • chainsawz
    chainsawz Member Posts: 113
    edited July 2010
    Options

    JJ - you will get thru this and you will feel better when it is done...hang in there.  It is very difficult to work and do chemo....I took 6 months off work, so you are very strong to work and get thru this mess!!  Everytime I thought I couldn't get thru it, I just told myself if it's doing this to me...imagine what it is doing to cancer!  You will see the light at the end of the tunnel and you will recover...ask for help, sleep when you can and look to the bright future with no chemo and no cancer :>  lisa

  • JustJean
    JustJean Member Posts: 170
    edited July 2010
    Options

    You were fortunate to be able to take six months off work. I do not have not luxury and have to work if I do not want to lose my house and my car - and the last thing I knew, although my taste buds have changed, I still like to eat. No working = no income. I am out of sick and vacation time, there is no short term disability, and long term disability won't kick in for this sort of relatively short term thing.

    I'm thinking about stopping the chemo, it just feels so toxic, and exploring other ways to deal with this.

    And wow, I'm awake a half hour later than I was this time yesterday. (insert rolling-eyed smiley here) Frown

     Getting offline now because my own negativity is driving me nuts...

    JJ

  • navygirl
    navygirl Member Posts: 369
    edited July 2010
    Options

    JJ...don't worry about your negativity, it's fine, we've all been there -whether we had to work or not it's incredibly stressful no matter what your situation is. I can't stress enough how important it is to call your onc. and talk to her about how this is affecting you. Falling out from exhaustion won't help anything and it sounds like that's where you're heading. She may be able to reduce the amount, or spread out your cycles, both of which will reduce the toxicity in your system. She may have another chemo to use, that would be just as effective but not give you these side effects. Also, while I've never had to use them, I understand there are resources for financial support that maybe able to help you meet your bills so you can reduce your schedule. I don't know if that's an option but if it is, it's worth a try. There are links on this site, there is the American Cancer Society, and your local government may have links on their website as well. First and foremost, I want you to call your onc. - today if possible! I am sure she/he will have a back up plan!! That, my friend, is an order! (insert saluting smiley face)

    (((hugs))) 

  • chainsawz
    chainsawz Member Posts: 113
    edited July 2010
    Options

    {{{JJ}}} - Navy is so right.....we've all been there.  There's just nothing fun about this sh!t.  I hope your onc can offer you a solution to ease the SE....just know we are here for you.  lisa

  • mohonda
    mohonda Member Posts: 10
    edited July 2010
    Options

    Thanks for making me laugh R. I just found this forum and am I relieved. I had been hanging argund the stage 4 forum and never even thought there may be a lesbian group right here. Its funny most of the women are in the closet on the other forums. No not me not going backwards.

    Sadly, I had an appt today and was told tumor marker are elevated pretty high. Shit just when I was feeling pretty good about things. I have another pet scan in a week, then going to a cancer center to get 2nd opinion. I still have the tumor in my breast and obviously the Tamoxofin is not working so I need a change and my doctor seems slow to make a change. I am glad I found you other women. I do believe the hetero's have more support unless you have a partner and a caring and loving family to help you. Well I have to make some calls to track down medical records from CA. Wish me luck. I will come back soon.

  • chainsawz
    chainsawz Member Posts: 113
    edited July 2010
    Options

    Hey Maureen - another stage iv'er here!   So many are afraid to post here, but that's okay....they gotta do what is comfortable for them.  Good luck with the 2nd opinion....there's always a different way of doing the same thing so it's always worth another opinion!  I don't hang out over here very much because it is not a very busy forum, but feel free to pm me anytime :>  lisa

  • navygirl
    navygirl Member Posts: 369
    edited July 2010
    Options

    Hi Maureen, welcome to our thread! I'm glad you found another outlet besides the stage IV one. Sometimes, a girl needs more than one place to hang out :)

    JJ>..how are you doing girl? Were you able to talk to your onc and talk to her about altering your schedule or the treatment being used? We're praying for you girl...I hope you are doing better.

    I hope those who are absent lately are absent because you're having a dang good summer!!!

    (((hugs)))) to all... 

  • JustJean
    JustJean Member Posts: 170
    edited July 2010
    Options

    Hey Navygirl (did I tell you I was in the Navy? 77-81, stationed in Charleston SC before they closed the base down),

    Thanks for thinking of me. I have been doing huge amounts of research. I do have a call into my onc (he was on vacation last week) but at this point I think it's mainly to see if he has other ideas or still wants to be my doc for the AI portion of this, because I am done with chemo as I know it today.

    Of the three people I have told, my best friend is horrified because she doesn't believe that anyone's cancer care is complete without chemo and she also thinks that if even one cancerous cell is out there that it's a matter of time before I'm dead. She loves me, but I am going to have some talking to get her to see this.

    My lover is supportive of me and told me today that she'd not said anything to me because it's my decision, but that if it had been her she would not have chemo. She is happy that I'm considering not doing it any longer. That was not a surprise to me, since she and I think alike and I only reluctantly agreed to the chemo in the first place because the onc made it sound like something I really HAD to do and I just sort of numbly went along with it. Going numbly along with things is not my normal style.

    My sister, the ultra-conservative one in the family, said "I definitely support that decision". Wow. I guess I shouldn't be surprised - she's been doing the research right alongside of me - but I was. We ended up talking about that and she said that the last year and half had taught her a lot about alternative stuff (she badly broke her hip at 51 and now has a metal rod down that leg) and helped her learn to open her mind. The real shocker for me was when she said "If that happened to me instead of you, and I had done the research I've done, I wouldn't have started chemo at all". Wow.

    So there's a long-winded and probably unclear explanation of where I am at the moment. Could I be wrong? Certainly. But where I am right now says that chemo is not the direction to approach my healing from. Of course, that doesn't mean that it's not exactly the right thing for someone else, just that it's not for me (unless something happens to change my mind). 

    I don't know exactly what is going to happen next. I already see some alternative medicine docs and they are more than happy to help me detox from the chemo and from general environmental things. I also have an alternative therapist who is really into meridian tapping - I used it before my mastectomy to calm myself down and it really helped and I plan on making it  big part of my recovery, to help take my body out of that oh-so-intense "flight or fight" response it's been going through for months now. Oxygenation therapy, alkalizing therapy, meditation, Reiki, massage, yoga, and changing my diet to get to as organic a diet as I can get to - I am also diabetic and have been controlling it with big increases in protein, which I now realize were loaded with hormones and antibiotics so it's no wonder that that stupid cancer came back! Today I found an organic beef farm about 35 minutes from my house. I'm going to replace all the beef I currently have with meat that isn't full of growth hormones and which was grass fed and not fed things that cows weren't designed to eat. I'm going to eat more "live" food also. 

    I almost feel like an outcast here at BCO nowadays and will probably at some point just fade away into the sunset. People who do what I'm about to do are not the norm here. Oh, I don't think anyone would be deliberately mean or anything, but my research and opinions are most likely not going to be well received. I get that. I understand that. I don't think there's even a place for discussion of this sort of thing other than the Natural Girls thread.  I'm sure I'm going to face it in real life, also. I told one man at work that I was thinking of stopping the chemo and he was horrified. I asked him if he had researched statistics about people like me, and, of course, he hadn't. So I told him that until he had, and could have a meaningful conversation about it, that he really needed to trust that I am intelligent enough to have done the hard research.

    I cannot survive another chemo.  I haven't decided on the rads yet, that's my next research project. Unless the oncologist can offer me something other than dose dense AC, AND give me statistics that prove it actually works in my type of bc, well, I'm just done except for considering rads and the five years of an AI.

    I finally felt well enough that my sister and I went to an outdoor craft show today and then to lunch. It was nice to do something "normal".

    (((((((((((((hugs))))))))))))))))) to you and all the wonderful women in this thread. I may not have said much the last fews months but I've read your words and taken them into my heart.

    JJ

  • navygirl
    navygirl Member Posts: 369
    edited July 2010
    Options

    jj ~ it's so good to see you posting! It sounds to me like you''re making an informed choice and that's really all we can do. It amazes me how different this is for all of us. For me, the DD A/C was the easiest part of my whole treatment -save for the first weekend after dose 1 when the hadn't quite managed the nausea meds yet. Once that was under control, it was a piece of cake for me. After that, the Taxol/Herceptin combo almost killed me -literally! Staying on Herceptin after turned out too be not much better. I'm so, so glad you have regained enough to enjoy and outing and a lunch. Sometimes, it's those little victories that make it worth it. I'm very glad the sister is on board, sometimes conflict within the family is he worst. I keep the details to myself, just for that reason. Everyone in my family has an opinion, they never agree on anything -but I said in the beginning, when it's their treatment -they'll have their say, until then it's my business. 

    I was another fab day to get to the pool today. The ankle is a sheer wonder, 24 hours after I first started walking on it, you can barely tell I have a limp. It's just amazing. Now. I am going to take every single day and use it towards my goal of getting this chemo weight off. Now that I have a functioning ankle, it should be just that much easier. I can't wait...

    Hugs ladies...I hope all are well!! 

  • bookart
    bookart Member Posts: 210
    edited July 2010
    Options

    I'm just throwing out a beef here - I went to my six month oncology appointment today.  I've gone to my partner's multiple appointments; listened to long stories about her medical ailments and appointments I haven't been to (like today's - when she had an appointment at the same time as mine).  And today, she didn't even ask how my appointment went.  I don't get it.  I'm upset, to say the least.  We've been together ten years, and this has been one of the worst situationally.  It has really created a gulf between us.  We have good times, but things like this make me sad.