MIDDLE-AGED WOMEN 40-60ish

goldie4040

Hello Dianarose, I am new to the forum just joined the other day.  I too am worried about my long term use of xanax.  It doesn't put me to sleep anymore, but if I don't take them the anxiety gets overwhelming.  I have seriously thought about cutting back gradually.  They say you should go down in half steps every two weeks.  So, if you are taking .5 every night, then go down to .25 every night for 2 weeks, and so on, till you can go off them without withdrawal.  I am afraid that when I need them  again for my reconstruction they won't be of any help.

dwill

Wow,elimar!! Barely made this thread, I just turned 60.LOL!!!  BC was my 60th birthday present.  Actually was diagnosed on Feb 26th and my 60th birthday was March 9th, 2013.   So true about many things that you stated.  Husband took off 6 years ago with a woman 20 years younger after a 30 year marriage, kids are grown, finally paid off over $40,000 in debt left over from the marriage. Got a great job--making a great salary. Living alone and independently.  And to top it off, I finally bought my dream car an ATS Cadillac, 2013.  Then, Bam!!!  On a general yearly mammogram--I am told I have cancer--two types and need a mastectomy.  Okay--there goes my independence, my financial freedom and my mind!!!  Well- not quite my mind--I am still holding on to it barely.  Love this site--it keeps me centered.  I find people that are like-minded.  Got to the point I was tired of everyone at the job and my church worrying about me and forever asking how I am doing.  So-- I have been staying away from most.  Couldn't even work my job for the last couple months after the mastectomy.  Okay, I know I sound like I am venting--but could some one have told me how bad this reconstruction process is--or maybe it is just me.   Well, on the good side--love this site.  I can cry, laugh, get mad, feel sorrow, or feel joy--there is alway support. Love this site!!

dwill

Goldie4040, I've been on Xanax for about 4 years before my BC for anxiety.  Although, I have been prescribed to take 0.5  mg twice a day, I had been getting by with taking only one tablet--all these years--just at bedtime.  Since the BC surgery, one doesn't seem enough.  Anxiety and depression are often a bigger problem for me now and I find it hard to sleep most nights or days.  So,  I have had to bump it up to the two that had first subscribed.  I was wondering if the the increased depression and anxiety were a side effect from the hormone therapy.  Just wondering???

barsco1963

Welcome Goldie4040 and Dwilli4483 - really don't like having to welcome newbies due to the nature of this forum. But would rather you be here than have to go it alone.

Dwilli - venting is one thing that we all need to do and this site is a safe place for one to let it all out. I chose not to reconstruct but have heard that it can be troublesome/painful at times. Hoping that it gets better quickly for you.

We middies sure like to have fun but also can be serious and informative about many different topics. Stick around for lots of support, information, encouragement and fun!

cmharris59

Hey ladies!!! I am so sorry that there are still so many going through this horrible experience! I know it has been three years since I posted.. I  I honestly didnt think I would be missed... Nice to know that I was... lol

A lovely lady PMed me and got me thinking I should check in.  Honestly, I still get so angry that I wasn't sure I could be of any help to anyone.  Being alone and disabled thanks to the chemo has made me an unhappy camper.  BUt if I can answer any questions , feel free to ask or PM.

DellaHJ:

I took some anti-depressants, but had horrible side effects. Talked to a psychiatrist until my insurance ran out.  Still do not have breasts done... yep 5 yrs and counting.. still walking around with a tissue expander on one side and poor lonely breast on the other. Had to change surgeons last year and now trying to get money saved to afford the surgery to finally get them done.  Hard to get it done on Medicare.  long story....  My surgeons started out  being pretty good ,  but failed in the long run...  I still have bouts with depression.. more often than not.. Frankly, if it weren't for my cats, I don't think I would have lasted this long.  This has been a long and painful journey.

I certainly hope that you ladies are  managing the journey better than I have.

C

Loral

Happy Memorial Day !!!

elimar86861

Wow!  cmharris59!!!  It is good to hear from you.  I remember that there were difficulties in getting your recon. and I can't believe you are still toting around your tissue expander after all this time.  On the up side, now at 5 years, with HER2+, it is looking more and more like your B/C is a thing of the past.  The other thing I remember about your posts was that you did belly dancing (well, the little picture reminded me.)  Do you still?

Hi goldie4040, I don't use Xanax, but as a believer in less is more as far as drugs are concerned (and my liver concurs,) I always try to cut back to the lowest effective dosage.  Maybe something over-the-counter (like melatonin) would help with the sleeping.  If you do use something else for sleep, make sure to check the interactions.  I like the Drugs.com website.

Dwilli4483, welcome!  You need to return that birthday present!  You sure don't look 60 by the way.  My hormonal drug was Tamoxifen, but yes, I would say the hormonals can make a person feel moody and depressed.  Although look at the changes you had to go through...and now it seems like you are kind of isolated.  That can realy wear you down, happiness-wise.  I hope as you get a little further out from the treatment, things will get back on track, but you might still have to deal with the well-meaning, yet annoying co-workers.  BTW, as far as this thread goes, no requirements about holding onto your mind.  If there was, we'd only have about nine people who could still post here (and no, I am not including myself in that nine.)

barsco1963, Once again you have done a wonderful job of greeting the Newbies.  You are now the unofficial, official greeter!

Val, With chemo brain, who can remember what they were even interested in.  (Joking.)  I don't know.  My interests seem the same.  I used to like to cook more.  I don't know if B/C took that away, or if I'm just tired of doing it for decades.  I'm even worse now that my current treatment makes so many meals seem disgusting.  My husband has been handling most of it, and has come to learn that even if I make the comment of "that doesn't look very good," I'm going to sit down, eat it, and usually finish by saying it was tasty.  Food and I are having a big disconnect lately. 

cmharris59

Well... as you can imagine, I have not been happy with my docs. They will not say NED.. esp. since I had to stop treatment early.. Herceptin was a big NO-NO with my congestive heart failure.  We discussed the blood tests and  I was told they were hit or miss and not reliable , so I don't have them anymore.. cost prohibitive. Docs tell me that I am never gonna be free of the BC, isn't that refreshing?  I need a new onc but in this small town I have to take what I can get... and with my insurance , not many options.

 I don't dance much because I still have too much pain from neuropathy plus the heart condition and asthma have really slowed me down.. I try periodically, but I have lost a lot of muscle tone... down to 120lbs.. so my muscles have taken a major hit.

I stayed away from boards because I was afraid that my negative attitude would be too much. And honestly , hurt to see others managing better than I did.   It has been almost 6 years since my dx and honestly not feeling much better about it than I did in beginning... Too much loss...

Still trying to hang onto my sense of humor but it is there by a thread... lol I need something stronger.. maybe fishing line?  Anyway.. good to see that some of you are still able to give hope and comfort to our sisters with this horrible disease.

C

elimar86861

cmh, my B/C is on a back burner now because I got a new primary only it was colorectal cancer.  I didn't have chemo with my B/C, but now I'm getting to see how the other chemo half lives, and I don't like it one bit.  Due to my new ordeal, I lost 13 lbs. and I am not even filling out my skin!  I like to say "cancer supermodel" but that's only going to happen if saggy, baggy skin becomes the new hotness by some freakish miracle.  I still feel well-versed in B/C and feel I can offer hope to most, and humor to all. 

A note on losing muscle mass:  After all the damage and trauma of surgery, your muscles actually break down to release their protein so that your body can use it in the areas that need healing.  (I did not experience this with my lumpectomy, but I bet this happens if you get the more extensive Mx surgery.  I noticed it after the robot got done with me for the CRC.)  Until you are finished healing, it is hard to get your nutritional protein to build the muscles back up, because all that you eat goes to the healing as well.  Even tho' I know this, I am impatient (and flabby.)

jessica749

Funny-because I was diagnosed under age 50/ premenopause I've considered myself "young" with BC, not middle-aged! More denial. ! 

elimar86861

Hi, jessica749!  You will have to juggle both of those labels because that is considered on the young side as far as B/C is concerned.  But as for the Middle-Aged label, well, we all have our own yardsticks that we measure that by.  I'm not a granny yet, and I did do a few cartwheels on my last birthday, but I just don't feel like I can pull off "young" anymore.  My recent weight loss has also added more wrinkles to the mix.  Aarrrrrgh!

elimar86861

Just one more thing.  I'm posting a link to LUMOSITY, the brain games "as seen on TV."  I've been trying it for a week or so now.

I don't know if it helps chemo-brain any, but it's FREE.

cmharris59

Jessica: I , too , felt young and not middle aged... still do sometimes... I was 48 at time of dx and in great shape .. I thought.. very active and happy ... felt like I was still in my 20s and 30s.

Elinar: So sorry to hear of new primary C.. my primary doc wanted me to have colonoscopy, but the prep was too much for my body to handle.. Doc told me that colorectal was a concern for me, too... I really don't want to know..

I hear ya on the saggy  skin issue... that is my problem for sure.. As long as I am covered head to toe and wearing spanx... to get the skin to sit in the right places.. lmao... I can look somewhat normal.. and cute thin.. But Horrors! if I take off my clothes! lol!  I wish I could blame my muscle breakdown on the surgery, but after 5 years.. I think I can safely say that in my case it is a serious lack of exercise.  

I look at that pic I use as my lil portrait (taken two months after dx and during chemo, before surgery) and remember all the hard work I did for that body... sigh... and I loved every minute of it... BTW I am wearing a wig in that pic; I got a kick out of trying out new styles with the wigs. But chemo proved to be my downfall. It was tough for me.. it really bothered me because the s/e surprised all of us (docs and me).  I hit the jackpot on s/e. Thought I had caught my cancer early enough and I was in great shape; strong heart, good diet, regualr exercise, etc... but I had more s/e than most women and never got over them.. Don't expect the same results I had.  A lot of women get through chemo with temporary s/e. Some only have to take a short time off from work; some go back to work when it is over and thrive.  IN my case, it was always the surgery that scared me. I was so afraid of disfiguring and losing sensation... HA! 

cmharris59

 Little did I know... BUT I am STILL waiting on the surgeries to be over... lmao So I guess my fear of surgery was on target! lol

Always felt young, maybe being terminally single and not having kids had some bearing there... Now it just makes me feel lost and alone... sigh... OK getting depressed again.. time to get some rest and dream of dancing, working again, and being in love!

I can still dream, can't I?

NativeMainer

DellaHJ--I was on tamoxifen for several months, the depression was horrible, that's one reason I started the neupogen shots to shut down my ovaries so I could take arimidex.  Depression is nothing to mess with, that's for sure.  Welcome to the thread, I'm sure you'll find a lot of support here.  It can take some time to get the hang of navigating the threads, but that's ok, we've all been there and will help you. 

Dianarose--There is some variation from lab to lab on what is normal for some tests.  The Alkaline Phos can be just over normal because of the muffin.  I'm not sure what the Liver 1 and Liver 2 are, I'm not used to seeing the results labeled that way, so I'm not going to be much help there, but again, that muffin has an influence.  If the all the results are just over the line of normal it's most likely to be plain old dehydration.  Even mild dehydration  can skew lab  results.  Liver enzyme results are some of the most sensitive to outside influences.  Keep in mind that your liver enzymes may be slightly elevated after surgery from the stress of surgery and the anesthesia, so if they are in the same general area as they are now that will be a very good thing.  Hang in there, and let us know when the bakery is open, I'm take a road trip!

Goldie4040--Please, talk to one of your docs before changing your xanax use!  First, if the xanax is controlling the anxiety, it is still being helpful and going off it will NOT make things better.  Second--just because it's not making you sleepy does not mean that the xanax isn't helpful, it only means that you may need a slightly higher dose for sleep, or perhaps a different medication for sleeping. Third--If the xananx isn't effective when you have your reconstruction there are other drugs that will be, but most likely you will just need a little bit larger dose.  The phenomenon is called tolerance, your body gets used to the substance so you need a bit more to get the same effect.  This does NOT mean you are addicted.  It is a common physical response.  Talk to your doc, he/she will evaluate the situation and make recommendations.  DO NOT try to wean yourself off xanax without medical help unless you no longer have anxiety problems.  Actually, you should never try to wean yourself off any medication, you should ALWAYS do that with a doctor's guidance. PLEASE talk to your doc first. 

Dwilli4483--don't you love the way everyone assumes the stuff after diagnosis and treatment is all easy by comparison?  Crazy and so not true.  And there is nothing wrong with venting, and this is a good place to do that.  I know, I've done it hear a lot! 

Cmharris59--negotiating the health care payment system is a full time job, thrust on us when we can least afford to take on another huge task.  It is a long and painful journey, and has been longer and more painful for you than most.  Depression is a horrible disease itself, I struggled with it before bc, during and after and still now.  Please find a doc that you can connect with and will work with you.  Maybe contact the American Cancer Society, they can help you manage the system and get your rights, which includes reconstruction.  Medicare MUST cover it by Federal law as well as by law in most states.  Let us know how it's going.  There are times when holding on to your sense of humor is a struggle, and times when it's appropriate to let the anger  fly, too.  Maybe now is the time you need your anger to help you get through the next step or two?  Don't worry about negativity.  Negativity comes with the territory, we've all been there, and it helped me to know that it happens to others too.  So now I'm throwing you a rope to hold on to! 

staynsane

Hi ladies- it's been awhile, and I've just caught up.  Travel kept me away for a bit, and now my wings have been clipped a bit at work, so I won't be doing as much of it.  I noticed several newbies checking in; nice to have fresh blood to add to conversations on this thread!  So sad though, that what links us is BC... I have thought about not checking back; but I so enjoy the info, wisdom and humor found here. I just want to move on and try to put my experience in the past.  

But it's going to be a while I guess.  I met with my PS recently (and DID have a yearly mammo, since I was at the hospital- yay for me!).  He is confident he can fat graft the nooks and crannies that still remain, but will do that after I have enjoyed my summer.  My mammo was on 5/20 and I have not heard a word, which I imagine is a good thing.  I'll probably get the "all clear" card in the mail tomorrow.  After having a reduction/lift on one side, I was a bit fearful that it would hurt.  But the mammo was nothing like before BC!  Maybe being partially numb helped; never thought I would express gladness about that!

I am one of the lucky ones and have not suffered bad SEs from Tamoxifen.  I haven't had a hot flash in months, have lost the post-surgery weight I gained, and am not depressed.  I think two effects that may be attributable to Tam are lack of desire and a light sleepiness in the afternoon.  I've never been a napper, but boy, after work these days if I lay down I can go out!

Realizing that at 54 I better start getting some kind of exercise, I started walking 4-5 days per week. Sherry and the others who undertake bootcamp classes put me to shame!  I know I'll have to step it up when menopause hits (any good crystal balls out there?  Just saying...I'm fifty f-ing four!) and as of this morning, got my period for the third month in a row.  It had been kind of on and off, but it looks like I should again plan on monthly visits like clockwork. But I guess that keeps the threat of uterine cancer at bay.  How this disease givith and taketh away!

A couple of days ago I got kind of emotional and felt like crying.  That is NOT normal for me, and there was no clear reason behind it. Now, with my period this morning it makes more sense.  A couple of times a year I have gotten weepy beforehand, and the feeling is gone now so I guess it's attributable to that.  BUT I just realized, I don't seem to crave chocolate beforehand like I used to.  So maybe things are changing.

Happy Memorial Day to those men and women who have served our country and at such self-sacrifice!

elimar86861

Hahahaha, staynsane...they come because they are middle-aged with B/C, they stay because it's cheaper than therapy. 

barsco1963

Welcome Jessica749 - age is all relative isn't it? You would think sometimes that we are a group of middle school girls not middle aged women, the way that we carry on sometimes - lol

cmharris - I am a newbie since you left  and it is nice to "meet" you. Glad that you have found your way back. You have been dealing with a lot of crap and no one should have to do that alone. I hope that you decide to hang out with us for a while. We will certainly be here to help lift your spirits, lend an ear when you need to vent and just be a friend. 

I don't know what I would do without the friends I have met here on the boards. I don't have anyone nearby who "gets it" that I can chat with. So I come here to hang out and get my fix. It's amazing how a group of strangers can come together and form such an incredible bond.

Eli - I inspire to someday be a Walmart greeter. This is great experience for my "retirement" job. 

barsco1963

Oh yeah Eli, I was going to say that I did sign on to Lumosity once and did a couple of things. But I can't remember my sign in - go figure. Might have to think about that for a while - I usually use the same one for everything for just this reason.

dwill

Thanks barsco for the welcome.  I plan on sticking around.  This site is the best form of therapy for me.  Love reading and connecting with others.

cmharris59

Health Insurance and the law -

I have navigated the labyrinth of health insurance far more than I care to remember. I have discovered more than I ever wanted to know. Little known fact: The law in effect states that an insurance company cannot deny a woman recon as they once did based on it being cosmetic. They are not required to cover it more than any other procedure that is covered by the policy. In addition, they are only required to cover the patient as long as the insurance policy is still in effect.

Soo.. here is my long story. My wonderful health insurance would have paid 100% on any recon procedure I chose. However, since I had to go on disability during my treatments, I had to be covered by Cobra. Again, the initial coverage would have applied. BUT.. my "lovely arrogant" PS refused to do my recon until after my Cobra stopped. So BC/BS was no longer required to pay 100% of recon... by law. Since I was on permanent disability, I was eligible for Medicare. I had to wait for the 2 years on social security to kick in before I was covered. Since I am single, disabled, and under 65, I am not eligible for supplemental insurance to Medicare. This means that I am responsible for any costs not covered by Medicare.

Apparently, it is a little known fact that Medicare does not cover any of these procedures 100%. I have to pay my portion before the hospital will even consider making an appt for me to have surgery. Since I live alone, I will need help during my recovery. Recon is not a covered procedure for convalescent care, so any help I get, I am responsible for payment. Unfortunately, even my PS did not know all of these facts and thought he was doing the right thing delaying my surgery. By the time I was able to convince him, we had 2 days to get me in for surgery under Cobra. Pre-op tests the day before scheduled surgery, revealed my veins were too small for the DIEP my PS insisted upon. He THEN informed me that he could not do surgery unless I quit smoking for at least 2 months. Even though the smoking would not make my veins large enough to do the surgery and that he knew all along in my treatment that I was a light smoker. By this point, I had been on Cobra for 2 days shy of 2 years. I got the Cobra extension required past 18 months thanks to a clerical error on Social Security end or I would have been without any insurance for at least 6 months before that waiting for Medicare to kick in.

My PS refused to discuss any other options for recon. I was out of time. Now I have a new PS and he is willing to do a simple implant, but I need the co-pays, the deductibles, and the out of pocket cash.

American Cancer Society - Don't get me started

When I first contacted ACS, I needed help because I was having to drive myself to all appts, surgeries, and treatments - a 4hr round trip in the car - alone. ACS informed me that they were unable to help because there were no local resources available. After my emergency second surgery, when I was put on the curb outside the hospital.. again long story.. Hospital refused to let me make long distance call to attempt to get a ride home. A patient advocate was going to put me in a taxi to get me to the bus station, where I would have taken a bus to the nearest bus stop from my house, which is a "flag stop" one hour from the town where I live. Finally through tears and recriminations, I convinced her to call my former supervisor to make the 4hr round trip to take me home. The same supervisor that the hospital breached my confidentiality one month earlier by telling her I was mentally unstable due to my suicidal rants in recovery due to an allergic reaction to the morphine they gave me for first surgery and kept me on for 3 days!!!!

Am I still angry? you bet! that breach is likely what initially cost me my job. Granted after all the s/e and resultant disability, I would not have the job anyway. Mind you, this sounds like a horror story and incredible, and surely took place in a third rate hospital. But this is considered the eminent cancer treatment facility in the state. I am just not lucky!

These forums and my return-

I don't know if I can stay. I realized last night why I left. IT is a wonderful place, unless, like me, you start to feel guilty for being negative when you watch women who have bolstered you and held your cyber hand as you rant, pass from this life. Last night, I went to search out some of the women who had been there in my darkest moments early in my treatment to ask how they were coping. I could not sleep because none of them are here. They didn't stop posting because they needed a break, as I did. They bravely stayed and helped other women until they could no longer help anyone. I stopped visiting these forums because I could not watch another woman lose this battle and maintain my sanity as I rant against the injustice. I have spent the day thinking that maybe I should pick up the standard and carry on as they did, but I can't. I am too weak and too cowardly. I am not grateful to be alive. I am angry that so little is done to save these women and so little thought is given to the quality of life of the survivors.

I guess I haven't changed at all from the angry disillusioned woman that struggles daily against wallowing in self pity and depression, picking up the pieces of my life, watching "friends", neighbors and co-workers burn out or just walk away because it is demanding to be my friend. I wish that I could save every one of you from this horror and never have to see another woman fight it.  Know that I care very much about each and every one of you. Keep fighting! To those of you who have stayed... hats off to you! You are stronger and braver than I am.

barsco1963

cmharris - I dont know that any one of us is braver or stronger than another. Everyone's illness and tx is very "personalized" and we all have different demons that plague us. Our unique personalities are what keeps these boards very much alive. Some come to lurk, some come to post every now and then, some are daily readers/posters. There is no right way to "do" the boards. That's the beauty of it. Members are here when you need them to be - no matter the reason.

After reading your story, I can certainly understand why you feel as you do with the medical & insurance systems. I don't know that I would be able to find the silver lining in all of it. I cannot say that I understand what you are going through as you are dealing with a lot of things that I have not had to. I feel guilty because I am doing so well - I have not had to undergo chemo or rads. My first line of tx has been working for 19 mos now. I know that will change someday and then what? Will I be as upbeat then as I am now - who knows?

I guess I want to say that our fears, frustrations, and concerns are all legitimate. None are more important or more trivial than the next persons. Although I would like you to stay and hang out with us, I respect any decision that you make about being here. I do hope that you are able to find some peace with your situation and that you are able to find what you need to be able to move on and be happy. Keeping you in my thoughts - ((hugs))

elimar86861

cmh59,  Your feelings are not foreign to me.  I have a couple doctors I blame for not utilizing every opportunity to diagnose me and for not coming forward with a key piece of info., which might have gotten my treatment started six mos. earlier.  I don't even know if it would have made a difference, but I continue to harbor that grudge and now just hope that their colleagues can save me.  I have a lot of bitterness, fear, and the feeling of wanting to shove a 20ft. long flaming colonscope up their a$$e$ on a daily basis.  I think that I DO suppress a lot of that when I post here (and I want to because it is CRC and not B/C, although I never did want to join another online support group.)  Anyway, your story is important, and real, unfortunately representing some worse-case scenarios.  Feel free to post as little or often as you wish.  Most of us here are strong enough to hear it.  Most of us wish we could do more than offer kind words and help fix your situation.  If you decide to back off again, I hope you one day will reappear with a story of reconstruction and I hope it will be a good one.  You deserve that.

Meece

CMH, you were missed.  I am so sorry for all yu have gone through.  When I was first looking for recon, I went to a PS who said he could fix the BC side for around 9k after my insurance paid.  I felt destined to live without recon.  Then I was directed to a PS who thought he could help.  He told me it was all in the coding of the procedures properly (Not underhandedly).  I had the first step of my recon done for $900 out of pocket and the second step was $600 out of pocket.  

(((CMH)))

Eli~, you've done it now.  I have seen the commercials for Luminocity but somehow managed not to check it out.  With your endorsement, I have set up a log in.  I even managed to not care that I wasn't optimizing my training by paying to unlock all the programs, and will most likely be there every day until I get distracted....Oh, look at the pretty butterfly!

staynsane

cmharris59-

If I had suffered all of your BC experience, I too, might have just said "F-it" and kept my thoughts to myself.  No one wants to be Debbie Downer, and constantly reliving bad experiences by posting on these forums probably was not helpful for you to feel better. 

Isn't there a possibility though, that some of the women you got to know here simply went away because they have NED or are in remission and have moved on?  That is what I would eventually like to do. Losing even one friend (even a cyber one) leaves a scar that hits close to home and reminds us all of our mortality.  But I would like to think (hope) that some women move on because they want to forget about BC (or CC like Elimar) and that they return to normal (and sometimes even more meaningful lives) after their experience.  I imagine some that know they will eventually succumb to this disease leave because they have found an inner peace and want to squeeze all they can out of time remaining without publicizing details.

This forum (and others) was so helpful to me in my early days after surgery.  I think it is a wonderful place to come, share and learn.  And when it's not, no one will fault you for leaving.  We all just want the best for each other through this crappy disease.

Beatmon

Cmh: please stay here with us, even if only to read. I feel so close to all who post and learn and share everyday....morning and night, even though I rarely post. We will be carrying you in our hearts to help lighten your load. BE

cmharris59

Thanks for the support!.. I have been on an emotional roller coaster coming back to the forum. It has brought back lots of memories I would rather forget. Like the wretched post-it note I was handed, telling me I had cancer; the slogging through first opinions,  second, and third, doctor after doctor, until I finally found ones that seemed to actually listen to me and had some competence with cancer, and being let down by them and the lies they told me (yes, some admitted to lying to me about my treatment and my prognosis); the endless hours of research, I pored through on the internet and in the library; the financial and emotional loss of a career I loved; crying jags and furious outbursts in waiting rooms; hours sitting on a curb still woozy from anesthesia wondering how in hell I had come to that point; long nights sitting at the computer in the chat room with survivors; hating every minute of this dreadful disease and realizing how disillusioned I had been about the progress that cancer research professes to have made.

Eli: I know you have been around awhile. I remember when you started this thread. I posted some then, but had trouble relating to some of the women. So many of you have families and husbands. I lost my dad two years ago. He had suffered from Alzheimer's for the last couple of decades. What family I have is extended and scattered across the country. The nearest is over 400 miles away. My sister (poor thing is 3000 miles away), is jealous of my cancer. She believes that I am getting sympathy from our parents that she deserves. She went on disability after my DX due to a nervous breakdown; she couldn't handle me getting the spotlight. I do not say this because I think it. She told me. She refused to visit while I was going through treatment until her daughter threatened her with not seeing her grandson. My niece was my rock until she moved to TX.  Anyway, what I had started to say, was that I remembered thinking... why hadn't we thought of a middle forum before? lol Unfortunately, I still wasn't sure I fit.. I felt more like the younger single women, yet  guilty because they were younger and had not lived as much I had. I still don't know where I fit. Still, I would gladly come help ya with the colonoscopy revenge!

Staynsane: I would love to believe that those women moved on. Unfortunately, because although my cancer was early stage, I bonded with many women having late stage cancer. They could relate so clearly to the frustrations, anger, and helplessness, I have felt. They came through to let me know that my issues were not trivial and that horrible permanent s/e's and stopping treatment in early stage cancer can be as rotten as DX with later stage cancer. They understood the anger I felt unjustifiably that other women had it easy and we were fighting tooth and nail. Some could relate to the abandonment that I felt, since some had friends and family that could not handle their late stage cancer any better than my friends and family could handle my early stage albeit complicated case.

Barsco : Unlike me, they stayed and still managed to feel sympathy and support on this forum for women in all stages of this disease. Strong? Brave? Yes, they were able to put their own frustrations and anger on the back burner, as Eli said , they suppressed it, and were able to help others. Sure, they also lashed out and we commiserated over shared angers, but they stayed.

I came back and had hope when I saw that they were no longer posting that they too had moved on. But as I looked for their posts to get some indication of what they might be doing, I realized that I was wrong. I found them on the Angels thread. Some I missed by 2 years, others by just months. I came back to tell them I missed them, was sorry that I had let the PMs drop,  and I find that I missed them.. truly... in their last weeks. Those brave beautiful women helped me so much. I knew the odds that I would lose these souls to cancer were very real. I had seen it with so many  in the first few years that I posted. Still, it is painful. It does scar. I know the medical term is survival guilt. and YES! I have it! I also have deep rooted anger, depression, and fear... not of dying, but of living... like this... I mourn the loss of my carefree, happier days... content with my career, my cats, the occasional SOs that  flitted in and out of my life... the belief that I had donated to the cause and changes were being made, progress.. HA! I wish that I could have changed places with all of those women; they had so much to give, and so much potential. Yet, here I sit... burned out, angry, and once again... wallowing in self pity.  One of my oncologists  finally admitted that she had never understood my ingratitude for surviving, but now she realized that it was the drastic decrease in quality of life that I feared would and did become reality. I never wanted us to JUST survive. I wanted us to LIVE! I hate being a SURVIVOR! Still, she has never offered counseling... lol

I guess she still doesn't think it is serious enough. I wonder what it would take to convince her.

marlegal

cmharris, I join those hoping that you stick with us here even if you don't post. The occasional bursts of laughter that someone's post generates is reason enough! And maybe someone else from GA will come on here and read your story, and be able to offer more than just cyber encouragement. Maybe they could meet you for coffee, be a friend with an ear and a shoulder.

As for finding out that some of your friends were on the Angels thread, I've been asked many times in the last 8 yrs how I can deal with so many of my friends dying. I'm very active in the Chat Rooms also, and have travelled 5 times with BCO members to various locations and made true friends for life. Sometimes that "for life" turns out to be months. It breaks my heart, but I've met so many amazing women through BCO, whether online or in person and I wouldn't trade that. Each one has caused me to rethink certain aspects of my own life, my own behavior, my own preconceived notions. I've grown because of knowing them, even if I grieve eventually. Please don't regret that you didn't get to say "thanks" to some of them ... I'm sure they knew it in their hearts. We form special bonds here. With some, it's a little deeper than others. Funny how that can happen online just like it does in person. My rambling point is that we want to stay connected with you, and have you stay connected with us...on the okay days and on the shitty days. If there are more of the shitty ones, we'll try to put a little more laughter out there to bring the occasional smile to your face.

Hugs sweet sister. Like my tagline says, we're all just walking each other home.

cmharris59

marlegal: You are absolutely right about the wonderful connections even though short-lived.  I have no regrets about meeting and forming those bonds with those lovely souls, just that they are gone and I miss them. Elizabeth/Konakat was a dear friend and a light in the darkness. I cannot believe that I was naive or just oblivious to think that I would find her here still. I DO regret thinking that I had time... time to step back, try to find that independent spirit that made me thrive before BC, and realizing that some bonds are too precious and fragile to put on hold.

I thought I could log in and say.."Look! I am improving! I am finding some acceptance for this disease. Even in some worse case scenarios there is hope."  The last 48 hrs and the hefty bags full of Kleenex have proven that I was kidding myself. I don't accept a damn bit of it. The only improvement is that I bury my head in the sand now. I don't do self exams; I stopped having blood work, scans, and scrutinizing every change in my health; I put off follow up visits and mammos. I just don't want to know anymore.

I play computer games with strangers in cyber space where I can pretend that I am healthy, young, whole, and free of worry. Maybe if I pretend long enough I will be.  I know that I play the "if only" game. If only.. I had recon, then I could date again without the fear that sex will be excruciating - as if the two are connected.. LOL; if only... I could wean myself off the pain killers, I could dance and walk again without a cane - truth is just the opposite, only more pain killers will accomplish that; if only... I could get a good cardiologist and better asthma meds, I would have more energy - ya and if I got rid of my cats, my allergies would go away.. but so would my reason for living; if only.. I had shelves in my kitchen, I would get organized and have a clean house - ya that worked .. NOT; if only.. I could get health insurance that covered vision and dental, I could feel attractive again.. translation: be able to put on makeup that doesn't look like I work in a circus and have a pretty smile again - OK, maybe that one is close to realistic, but getting insurance coverage sure isn't; if only... I avoid the boards for a few years, all of the horror will disappear.... and I will be the only cancer survivor struggling... other women effected by this disease will be happy and live wonderful lives.. I will be the anomaly... Well, that is NEVER gonna happen in my lifetime.

If I do disappear from the boards, feel free to believe that I have found those dear friends alive and well; that I am doing yoga and belly-dancing again; that I am happy, in love and having grand sex; that I am back at work in a new lab looking for a better cure; moving on with my life and it is better than ever! yeah... IF ONLY....  see? I can play that one well... LMAO!

DellaHJ

cmharris:

I was really worried about you.  I am so glad you came back!  I wish I were rich so I could help out, but I'm just a middle-aged, former school teacher, so you know I am scrapping by.  LOL.  But you hung in there!  I feel so good about you.  You're a tough woman, warrior woman!