How do you keep from feeling your life's been ruined?

Lissee

tangandchris  -  please, please consider professional  help.  Personally do not recommend any RX intervention unless you've thoroughly research the pros and cons of the side affects.  Also, if you have resources locally, look into mediation and acupuncture.  Clearing you mind is a wonderful thing, especially if you can do it without adding more pills into your system.  

  

rabbitvelvet

Hi,

   I've been checking the 'threads' because I am so angry:(   I have to speak up/even if no one hears me.

   I am having serious side effects from chemo...first cycle threw me into the hospital for 3 days with neutropenia.  The second cycle caused my hands to swell, turn red and blister - "hand and foot syndrome" with numbness.  Finally my oncologist showed mercy and removed Taxotere from my chemo and substituted Taxol in it's place.   He also decided to split the dose of Taxol into thirds...to further reduce risks.  Unfortunately I had ONE session of Taxol and the last 2 sessions have been cancelled because my WBCs and RBCs are going down the drain, Again!  I asked to have another Neulasta shot to beef up my immune system but was told that wasn't a good idea.  Turns out that there is a small percentage of  patients that can never have more than one Neulasta shot....because their immune system is irreparably damaged! 

   I know that I am lucky.  I am financially ok.  I am close to my daughter and her family (even if she has been volatile as of late, finally deciding not to divorce her bum husband).  I don't miss the drama, esp. since she decided to divorce him initially because she wanted to "make me happy?"..AARGH 

   I divorced my 2nd husband after 22 years and moved to the NW, 8 yrs ago.  I left behind my girlfriends and my church / frankly most of what made me, - me.  I've been  floundering for awhile but had just started to get my s... together when bc was found.   It doesn't help that I live far away from most medical care and one chemo session is a 2 hour roundtrip car ride... 

  Thanks for listening              Marcia 

mary625

Dear Marcia:  big cyber {{HUGS}} to you today!  We hear you and hope to be a community for you when you need us.

Holeinone

Marcia, 

Being angry is pretty normal when you are in the middle of a nightmare. I had 7 Neulasta shots. I do not think I would have made it through dose dense A/C without it.  I did have neuropathy from the Taxol. It seemed minor compared to others, not concerned that it is going to be a problem in the future. 

Sorry your life seems so unsettled right now. I hope it all seems better tomorrow. We have all been there, and continue to struggle with this stinkin' disease.

rabbitvelvet

mary625 and Holeinone,

     Thanks for your responses.  It means so much to know that there are people in the world who "get it".

     Today is Sunday and I'm treating myself to fresh baked almond croissant (Trader Joe's finest) and Peet's Italian roast coffee.  Later my daughter will be by and that always makes me happy.

     Hope you 2 have a great day, as well as all the others that visit this thread.             Marcia   

    

tangandchris

Today is one of those days for me...actually the whole weekend has been. Thursday was #3 TAC and boy did I feel it by Friday morning. My 4 year old has been with my parents most of the weekend, which i'm so thankful for, but at the same time feeling so sad about. DH is a trooper, but I could see the strain on him this weekend. I feel like crap, and I just don't know how I'm gonna bring myself to do do this 3 more times. This is hard and I even have thoughts of what if this isn't even working?? Is it worth all of this?

The weather is beautiful this weekend here. I'm sitting in my bed looking out the window and I feel like life is passing me by. I got up and ate a little better this morning and washed some dishes, watched my church online and I'm trying to "make" myself feel better. I just feel alone in all of this. Would it be crazy to not finish TAC? I want my life back!!!

Holeinone

Tang, YES it would be crazy. I have no idea if my chemo worked, but I know I had to suffer through it, & it was hardest thing, still very fresh in my mind. 

You are in hell right now, pretending to be tough, wanting to scream or cry. You will get to the finish line, and it will take time for us to feel normal again, or what will be our  "new" normal. For me, guarded, wounded but taking it one day at a time. I wish we could see ourselves in 2 years, looking healthy and acting confident and carefree. Lots of hugs....

ziggypop

Tangy - You can do it. I know just how bastardly tough TAC is, but you will get through it. You can't allow yourself to worry that what is going on with you is making other people's lives harder. Yes, for a while, your husband is going to need to invest a lot more time and effort into caring for you - and as a result you both are going to have a relationship that has withstood a very tough challenge. And your child is spending time with the grandparents - that is a good relationship to develop. It helped me to think of the treatments as a series of really, really, bad dentist's appointments. Just something that you have to do. The chemo WILL end though, and pretty soon. 

Marcia - It's okay to be angry, in fact it's normal to be angry. I think I would worry about somebody who made it through this experience without being really pissed off more than a few times. 

((((hugs to you both)))))

tangandchris

I just want to kick and scream...I DONT WANT TO DO THIS ANYMORE!!!!

I know I can't worry about all these things around me, but I do. Yesterday dh went out for a bike ride, he came home feeling good and I swear I felt like such a downer for him. Like he was out amoung the land of the living and came home to the sick. I'm being dramatic probably, but that is what it feels like.

I'm so glad ya'll are on this board. ((hugs)) Seriously, I don't know you...but I do. I have shared things on here that I haven't said to anyone IRL.

 

rabbitvelvet

To all of us out there who are tired of being "good girls".

                   If you are angry get it out and don't worry we've heard all the words before

                   Stop feeling guilty because someone else has had to step up and help you.  Just consider their assistance as 'karmic payback' for all your many kindnesses.

                   Don't populate your altered life with worries /or the crappy one you feel you'll be doomed to endure someday in the future.....For once tell your fertile imagination to take a hike!!  At the most look to the present only...for once don't be a super woman.

                   Lastly, speak up to your doctor.... there is a point past where your good girl compliancy has diminishing rewards.  You do have the right to say, enough is enough!! 

cmoody

I'm from Louisville, too.

Damn right I feel like my life is ruined. I never saw any of this coming. I had just celebrated my 50th birthday. I was completely blindsided by my diagnosis. I awakened from a bilateral mastectomy from what I thought was going to be Stage 1 with no lymph node involvement, to find out that I was Stage 3A with 5/10 lymph nodes testing positive. Er+/Pr+ invasive lobular carcinoma. All of this happened February 2013. 

The last time I saw my breast surgeon, I was had to stand in front of a wall with mutilated chest showing and drains still intact and pose for their pic. I sobbed through the whole thing. They called me last week and asked me to come back for an annual check. I told them "hell, no. I'm not coming back."

My MO office was a chemo mill. They didn't follow protocol prior to administering Taxotere, and I ended up with a reaction like no other. Vomited so hard that I peed in the floor. My hands were so swollen that I couldn't bend my fingers, and the neuropathy was nearly unbearable. I developed blisters. I was in constant pain for about a week and a half. Hydrocodone, Oxycodone, and Morphine didn't touch the pain. Instead of 4 dose dense sessions of Taxotere, I ended up with one session of Taxotere and 2 sessions of Taxol. In short, I didn't get to finish my chemo. I fired my MO.

I had TE implanted at the time of my mastectomy. I looked like a freak. They switched out the tissue expanders for silicone implants. I still look like a freak. I try not to let my husband see me without a shirt.

I went through radiation. It was a breeze compared to chemo. I was tired, but I understood why I was tired, because my case manager at the RO's office explained it to me. 

I was put on Tamoxifen and had a horrible reaction. I was suicidal, and they realized that it was the Tamoxifen. They took me off the Tamoxifen and put me on Fareston. I've been on it for a couple of months. Same thing. Docs said they would put their heads together and come up with another plan for me. I don't know that I'm interested in another plan. I battle with chemo-brain, so they give me anti-depressants, Ritalin, Xanax. I feel like Elvis--uppers during the day; downers at night. I'm a walking chemistry experiment. 

I went through chemopause. Nobody warned me. My libido's gone. I've been married two years and no libido. They prescribed me Viagra and Cialis. Nothing. I've been thinking I should tell my husband to get a girlfriend on the side. I would totally understand if he did.

The crying everyday is old. Sometimes I start crying and don't even realize it.

Constant burning pain in my cancer breast. Doc tells me it's normal and that nerve endings are healing. How do I know it's not something else? There was a monster growing inside me. How do I know if it's truly dead or it's just pretending to sleep until it can sneak upon me again.

Funky hair. Dried out skin. Can't remember anything. Totally unorganized, though I use a planner and index cards to try to keep myself organized. I have a degree in English and a Masters in Learning and Behavior Disorders. I can't remember words. I used to be articulate. No more. I do stupid things like getting off at the wrong exit on my way home. I can't make decisions if I have too many options. Multi-tasking is out of the question. I used to bake and decorate cakes. Can't do it now. I used to be a good teacher. I'm probably not even a mediocre one now. I had planned to get my Rank I, but now there's no way. 

I'm nobody special to my 2 yr old granddaughter because I've been sick for the past year. I've started giving away my heirlooms to my kids, because I don't know how much more of this I can stand. I'm a shell of a being. People keep telling me that I look so much better than I did, but they are seeing an illusion created by Clinique and my plastic surgeon. I am a shell. An empty shell of a human being. I hate me and what I've become. I don't even know what this is that I've become. I can't believe I went through that treatment hell to be left like this.

Decided today that I'm taking myself off all my meds. Everything. If I don't feel like a human again, I will end this. I didn't go through all that special kind of hell they call treatment, so I could live like this. I watched both of my grandparents die in hospice units. I will not put my children through watching me slowly die. 

If they'd told me that this is what survivorship was going to be like, I never would have had chemo. 

Holeinone

cmoody,

I also have stage 3 lobular cancer. It has been a nightmare, the chemo, the loss of being carefree and believing I would see grandchildren and retirement. 

But, I do see a light at the end of this tunnel. I did not go through all that horrific chemo to not enjoy my life now. 

I hope things change for you, you might consider talking to a counselor, but I am sure you have done that or have been advised too. You obviously are a well educated woman.  Lots of women here on BCO with wonderful advice. Look around on the differents threads, find a group of ladies to visit with, it really helps.

Racy

cmoody and others, I wonder if you might have Post Traumatic Stress Disorder? I can identify with your feelings. Consider talking with your doctors about treatment for your psychological symptoms. It will make you feel much better.

finallyoverit

Good question... and one I've recently been struggling with.  I really thought I was "over it" and had put it in the past, but I'm really starting to wonder if that is even possible?  I am a positive person by nature, but the experience with and through bc has shaken me to my core.  It's easy for people to say, just get over it... or move forward and put it in the past.  It's just not that simple when daily you are faced with scars, shrinkage from radiation, pains that weren't there pre-treatment, hair that although it has grown back is not quite the same and the daily fear that God forbid, the beast returns.  It's frustrating and completely maddening.  My self confidence is nothing compared to what it was.  Sure, I put on the brave face for those around me, but inside I feel like I'm falling apart.  Nothing seems to be going right in my life, which is also not helping.  I've been job searching for close to a year now and despite several promising opportunities, nothing has worked out.  Still struggling to dig myself out of the financial hole bc put me in.  And, thanks to Tamox, I cannot seem to lose a single pound even though I carefully watch what I eat and am exercising 4-5 times a week.  My MO tells me "not to worry about the weight"; not easy when that's a contributing factor to your self esteem being in the toilet.  I wish I had the answer... just know that you are not alone.  I'm hoping time will help - but I've almost reached 3 years of being out of active treatment.  How long do I have to wait for some peace?  Don't we deserve at least that after all we've been through?

Holeinone

finallyoverit, well your name states what your goal is, so that is a good start. I am only a few months post rads, still wondering how long the chemo brain will last..I believe I do have PTSD & am being treated for it. The fear of mets is my shadow, all day everyday. 

Looking forward to a busy, active summer. I lost last summer, I want this one to be full of good memories. 

Happy Easter to all...

exbrnxgrl

None of us are alone in this bc world, though at times it may feel like it. Every emotion we feel, even those awful, dark ones is valid. It takes a huge toll on every part of our existence and to top it off, the regular ups and downs of life don't stop just because we're dealing with bc. I am almost 3 years into a stage IV dx and don't claim any great insight, other than the perspective that time has given me. A few things that have helped;

Learn as much as you can about your situation, treatments, options, side effects etc.  Don't be passive and wait for your medical team to tell you! Even those who do a great job of informing patients may forget to mention something.

Feeling down, angry, hopeless etc. are par for the course as you navigate this new world. Let it flow, but don't let it take over your life. Seek counseling and meds if necessary. If one doesn't work or the counselor is not a good fit, try another.

Find an onc who you are comfortable with. This is really, really important. Your onc must not only be an expert in the field but must be someone who respects you and your concerns and understands that YOU are the leader of the tx team and all decisions are, ultimately, yours. My first mo was the head of oncology at a large center. Brilliant man, who treated me like a slightly dim witted child. My RO was completely the opposite so I asked him for a recommendation for a new mo. I now have someone who respects me, knows that I am inquisitive and intelligent and is very collaborative in charting the course of MY tx. 

Lastly, no one sees bc and all it's life changing effects coming. It's the classic example of shit happens. It stinks and often involves more than you ever imagined you would have to deal with. It can effect every aspect of your life. In the end, you have to figure out how to play the hand that's dealt you, but you don't have to do it alone and hopefully, you will find a new normal. Yes, "new normal" sounds cliche but we are  never guaranteed anything in life. In the end, each of us must decide how to live with what life deals us.

Thinking of all of you as you deal with bc.

Holeinone

Caryn, thanks for the amazing post. You are a positive leader, that is respected on many threads. 

exbrnxgrl

Holeinone,

Thank you

Caryn

exbrnxgrl

Kayb,

Just saw your post, thank you. I don't presume to put myself up there with Garcia Marquez (May he rest in peace)' a literary giant of our times, but what matters is life is how you decide to deal with it. Yes, screaming, depression and anger are understandable initial reactions, but what happens after is up to you. You can skewer me now for putting myself up there with Garcia Marquez or for having an unrealistic attitude, but this is how I live with stage IV bc. It sucks big time, but I'm still here, not the same, but still here.

Caryn

Tomboy

oh. i did not realize GGM had died. He made me think and made me laugh, on the one's of his i did finish...

exbrnxgrl

Yes, Garcia Marquez was not light reading. He passed away a few days ago.

finallyoverit

Thanks for the perspective girls.  You are absolutely right... I can't change the fact that bc has entered my world- the only thing I can do is choose how I live my life going forward. Not that anyone "expects" this diagnosis; but I really did not think I'd be dealing with such a serious illness in my 30s. I know that I'm incredibly lucky and that many are dealing with much larger issues than I am.  The last few weeks have been trying for a few reasons and the bc side effects are just magnified.  I'm still dealing with pains that began during chemo and still linger 2 years later... and more frustrating, I swear I still have chemo brain.  There are times when the word I want just won't come out.  Sentences come out all jumbled and I look like a complete idiot that can't put together a simple sentence.  I was never like that pre-bc or pre-chemo.  It's incredibly frustrating.  I have noticed that it gets worse when I'm stressed out about something.  I guess I really need to find a new outlet.. maybe I'll try yoga.  Anyway, I just wanted to say thanks for the support and reality check.   You guys are the best!

exbrnxgrl

finallyoverit,

I sense a bit of laughter in your post and that's a good thing! I will say there are advantages to having bc when you're older. I am almost 58, so I blame all of my mental lapses, body changes etc. on aging! It still sucks.

cookiegal

cmoody, yikes.

I have been on the boards a while and every so often someone gets the very worst treatment has to offer.

It's not fair, it freakin' sucks.

I won't even give advice, with so many se's you must feel overwhelmed.

I don't think I had it as bad as you, but I had awful disabling pain for about 5 months, beginning 2 months after treatment. It blindsided me, I couldn't drive, I couldn't go to a movie, or out to dinner. I could walk and lie on the floor. 2 hours a week TV was good enough to distract me. I lived for those two hours.

I got lucky ish, some of my se's got better, but also a post treatment support group helped me a lot.

I read all the chemo brain studies, some have it forever, but it does resolve for a large number of women a few years out.

Good luck. Nobody deserves this, and it can be hard when some sail through and some get the shaft.

cmoody

Since having written my last post, I've visited my RO. She recognized that I was not in good shape at all. She immediately took me off Fareston. I quit taking Ritalin. I've eased myself down from 100 mg to 50 mg of Pristiq. I'm breaking my Xanax in half so I'm not walking around like a stoner. After a week, I feel more like myself than I have in months. i'm still dumber than a box of hammers (no short-term memory and I make horrible decisions.) I'm going to enjoy this while I can, since I know that before I know it, I'm probably going to be on another SERM. If it affects me the way Tamoxifen and Fareston have, I'm going to fly without a net. 

jujuga

I feel the same.  I have no husband and my male friend has gone on after diagnosis.  Women did come and were there for me during my double mastectomy and hysterectomy.  Now I may have another problem even they are falling away.  Hold onto the few that stay with you.  Thank your lucky stars.  I'm alone without support and too much trouble.  

Anonymous

Life as you knew it was turned upside down.

For some, like me, my career, finances, friend and family relationships were wrecked.

For some, it is easier finding 'the new normal' because they have support.

People like me pray it will come back so we can get out of miserable lives.

exbrnxgrl

bluepalace,

I am so sorry that you have come to this point. We can offer you online support and I hope you take advantage of it! Have you spoken to a social worker at your cancer center? They are often good at hooking you up with all kinds of support services. And one last thing, if you're praying it will come back as a path to death your first stop should be a psych who specializes in cancer patients. I have stage IV, believe me, you don't want it. Take care.

Caryn

farmerlucy

bluepalace - Caryn's suggestion of contacting a social worker is an excellent idea. Too many time the emotional side of a breast cancer dx is overlooked. PTSD-like symptoms are quite common for us breast cancer folks. This is addressed at the very top of this forum. I'm sorry you have had such a hard time. I am not ashamed to admit I was suicidal after my diagnosis. Sometimes it all gets to be too much and it is so hard to climb out of the black well of despair on your own. We are here for you. Please come back and let us know how things are going.  

Deblc

So glad that we have the support of this board and all the women who understand what we are going through.  I fight against severe anxiety every single day, the minute I open my eyes in the morning I have an anxiety attack (don't want to take any more drugs, I.e., anti anxiety, I feel I have pumped enough drugs into my system). 

So tired of putting on a brave face for family and saying "I'm fine" when you just want to lie on the floor bawling. So tired of people who don't understand how hard it is to deal with this emotionally, and who EXPECT you to "have a more positive attitude" (even my MO told me this).   So thanks to the ladies on this board, who understand what it feels like to suffer through treatment.....and to live with the never ending crippling fear that treatment will not work and the cancer is still there or will come back. I am so afraid of that happening, that I even researched assisted suicide and I think it is a crime that it is illegal in most countries. Why do they allow people to suffer long drawn out horrific deaths from end stage cancer, my biggest fear. It's a crime against humanity that they put animals "to sleep" to end their suffering, but won't allow it for human beings.

It helps to know that I am not the only one who cannot take this all in stride.