Having a REALLY bad day....Need to vent!

dmoh

I just need to vent, so please bear with me. 

Had Stage 1, 0/22 nodes 9 years ago treated with lumpectomy, AC x4, T x4 & 7 weeks of rads.  Everything was going great for 9 friggin years, then bam, almost to the day, I'm diagnosed with a local recurrence. Had bi-lateral mx so I wouldn't have to feel this despair ever again (yeah, right!).  Did TC x4, had failed tissue expander removed in July (still have the other one in), and just two weeks ago was diagnosed with mets to two axillary lymph nodes and likely one or more internal mammary nodes!!  This nightmare never ends!!!!  I am so tired of being angry and bitter, but I am so scared I don't know what to do with myself!  Just started Xeloda (1 week on, 1 week off) and Avastin (every 3 weeks) to try to shrink the axillary node because it's way up near my clavicle in a tough spot to remove, plus it's attached to a blood vessel (of course it is!!)

In the past I've tried to use humor to deal with this crap, but honestly I'm tired, scared, and finding it difficult to cope.  I've got two great kids DS 14 and DD 12, plus the most amazing, wonderful, loving, and supportive husband.  I'm not ready to leave them.  I never understand how people say they're not afraid of dying.  I'm terrified!!!! I feel so guilty that I've given my children this awful medical history and that I'm putting my family through this horror again and again. 

I think I will take time off from work (I teach) to focus on healing, but I'm not sure I can be healed at this point.  Anyone have a similar diagnosis and is doing well?  I'm finding it so hard to cope, please help.

 Diana 

Mazy1959

Diana,

I am so sorry you have to deal with this crap again.

My diagnosis isnt like yours but I am sure someone will come along who can help. I know its hard and its perfectly fine to vent. Have they done a biopsy on any of these new spots? Or maybe I should ask if its where a biopsy can be done. My onc says that just because a person was ER neg b4, doesnt mean that all future tumors will be. Hugs, Mazy

dmoh

Mazy, thanks for the hugs and reply.

The large node under my arm was the only one biopsied and it was positive for malignant cells.  My BS says they don't usually biopsy the mammary nodes because of the risk of lung puncture, they just go under the assumption that they are positive as well and treat accordingly. 

I took today off from work, felt like crap yesterday, so I decided to lay on my couch all day and veg.  The Xeloda is making me feel fatigued and overall "yucky," but tolerable I suppose compared to how I felt on the TC (could barely lift my head off the couch!).  To top things off, the node is really making my arm ache.  I'm so afraid of getting lymphedema as well.  RN checked my arm at chemo on Monday and didn't see any pitting, swelling, bruising, or redness.  I suppose that's good, but it still hurts like an SOB.

My couch is calling....Happy Thanksgiving to everyone. 

Diana

Makratz

Diana,  I can only imagine what you are feeling.  That sucks Big time!  BUT!!!  You have to fight this and try to stay positive.  Maybe after you vent for awhile, you can use your humor again.  Think of those beautiful children of yours.  Fight for them!!  I have 2 kids the same age and that's what kept me going.  I'm so glad you have a wonderful DH too.  That can make all the difference.  Keep on fighting!!

((((((((((((((((((((HUGS)))))))))))))))

Linda

lovemyfamilysomuch

Dmoh,  Sweetie, of course you are tired of this nightmare!  I am so sorry you are going through such an experience.  I want you to know that I am sending lots of love, support, encouragment, prayers and healing your way.  I am sure you are such an awesome mom and wife.  You will be able to do this!!  Please rant all you want!! WE are all in different places, and I can only imagine what you are feeling but I want you to know that you are supported!! In sisterhood, xo

Fitztwins

One step at a time. It is a lot to swallow. It takes time to get used to what is going on and processed.

No one wants to die. I have been living with mets for over a year and a half. Doing great, working full time, hair is back looking cute, I have twin 9 year olds. I am doing my hardest to be here as long as I can.

Sometimes we need a little help (anxiety meds) to help us through these dark days of fears and anxiety.

Hang in, saddle up. You can do this.

Janis

RobinWendy

I've been Stage IV for six years (cancerversary is December 1st) and have been asymptomatic the entire time, although I am not in remission/NED.  I know how much this sucks... we all do.  I use anti-depressants to help me cope as well as humor.

When I was first diagnosed with mets, you couldn't scrape me off the floor.  But, as time went by, and I continued to feel well and my first line of treatment (Femara) kept working, I started living my life normally (somewhat) again.

Give yourself time to get your brain around this.  Take one day at a time.  Get drugs if you feel they will help.  You may never "come to terms" with being Stage IV, but you can still have joy and productivity... possibly for many years.

I had a not great scan several weeks ago and I definitely had a major meltdown and pity party.  My doctor "upped" my meds and finally, I have calmed down.  Sometimes I find that I just start feeling emotionally better... almost against my will.  Maybe I just don't want to waste too much time being a basket case when I could be out there living.  I hope the same thing happens for you.  Good luck... you can do this.

Robin 

Faith316

That Xeloda has been wonderful chemo for me!  When I was dx with IDC in April 2008, I had AC, Taxol, Herceptin, radiation and despite all of that, my cancer came back as IBC while I was still in treatment.  But, within 3 weeks of starting Xeloda (along with Tykerb because I am Her2+),  my IBC symptoms were gone.  I have now been on Xeloda and Tykerb for 4 1/2 months and am NED.  In just a short time, those two drugs did what 6 months of AC and Taxol, Herceptin and 30 rads treatments couldn't touch.  So ............... keep your chin up.  That Xeloda has worked miracles for me and hopefully will for you, too! 

BTW - I am also a teacher.  I took off the end of the school year after my initial dx in April 2008 and stayed off until Dec. of 2008.  Worked the rest of last year.  Started the school year this year, but quit work at the beginning of November.  As my oncologist said, expend your energy getting well instead of on 140 students.  I already feel better.  It was getting hard to teach with my hand/foot syndrome and fatigue.  Not to mention all the sick kids and swine flu all around the school!  Good luck to you!

dmoh

Thanks everyone for the encouraging replies.  I'm feeling a little better today.  Maybe it's because I found a ladybug on my comforter this morning and they're supposed to be symbols of good luck and health.  I'm so not a superstitious person, but at this point I'll hang hope onto anything that can't outwardly hurt me.  Or maybe it's just because I'm a little less achy and fatigued.  I think my body just needed a few days to adjust to the latest chemo assault.

Faith316 -- So glad to hear Xeloda is working for you!!  I'm hoping it will do what it's supposed to do for me and I can have a successful outcome.  You are so right about focusing your energy on healing.  I just feel guilty all the time.  Dumb, I know, but I'm sure once I make the final decision to stay home, I will feel better about that also.

Fitztwins --  Maybe anti-anxiety meds will be a consideration for me later on, but I don't think it's right for me now.  It's ironic -- I don't even like to take Tylenol for a headache and I'm allergic to a number of meds, yet here I am downing 7 Xeloda a day, plus the Zofran, plus Percoset, plus the Avastin IV, plus Zyrtec for allergies, plus Metoprolol for my rapid heart rate courtesy of TC, plus Vit D, plus CoQ10, plus a variety of antibiotics for a number of different infections this year, not to mention all the chemo I had 9 years ago!  Sheesh, it sounds so ridiculous when I write it all out!

This is all so overwhelming.  I'm so glad we have this forum where everyone truly understands and knows what it feels like to be in my shoes.  Anyone attend a support group and have you found it helpful? My docs and RNs have mentioned it two or three times already, I guess maybe they can see that sometimes I'm on the brink.  I just find the anonymity of this forum a lot easier.  I can type and cry and no one has to see me. KWIM?

Finally, a stupid question, how do you change your personal info at the bottom of your posts.  I've seen so many with quotes and multiple dx and tx mentioned, but I just can't figure it out!  Chemo brain strikes again!!

Diana

sue_blue

To change your info go to "My Home" and from there you can edit your profile and diagnosis.

I'm so sorry to hear this new diagnosis for you. I always feel it could be me at any time. I will keep you and your family in my prayers. 

tater55

I need to vent too.. my first post here from my home computer. I was one month shy of having 5 years since my diagnosis with Stage 3b ER  positive breast cancer. My first year of annual bloodwork. Was still taking Arimidex. Found out in August my cancer had mets to spine, hip, a few other places. Had a left hip replacement. Had hormone therapy/bone blocker that got changed to chemo when the marker numbers kept going up. I recognized today I've been through the stages of grief and I've arrived at sadness. I realized today I'm going to die. don't know when or how but this cancer will probably be the cause. I'm not afraid to die, I'm just not ready and I've got so many feelings about this.  I powered through my first treatment like gangbusters and thought this chapter was done.  this time I'm not so eager to talk about it to friends, even to my husband. I don't want to leave him.  I'm also a recovering addict was was in an NA meeting tonight, got hit really hard with how precious life is. I knew that "in my head" before but not in my heart. I didn't even think this shit could kill me the first time around, this time I know it can and I have no control over it.  I know I can make changes in my attitude, my lifestyle, etc but ultimately that's it. What a contrast from NA's assurances that if I stayed clean and worked the Steps I could arrest my disease and have a normal life. The irony is I can't take these feelings to my NA rooms or my family or friends without causing them pain. Thank God I remembered this forum.

I know this is a stage and I'll move on to accepting life on life's terms but damn. I just needed to get this outa me. Pretending I'm OK isn't going to work.  Thanks ladies for listening!

dmoh

Tater55 -- Feel better?  I know I did when I finally put all my crappy emotions down on this forum.   There are lots of wonderful ladies on this board who know exactly how we feel.  The stages of grief are an important way for all of us to cope.  You may find that you revisit a stage or two more than once before you finally reach true acceptance. I know I've been stuck at anger for some time now...

I totally understand about not wanting to share your feelings with family and friends without causing them pain, but sweetie, no one is in more pain than YOU.  If there's one time in your life to be selfish, this is it. I too have difficulty accepting kindnesses from people, but I'm learning and trying.  I've also recently tried to live by my new rule: "I can't and won't stress about things over which I have no control." I've always been a worrier and this is particularly hard for me. But, seriously, stressing over scans, bloodwork, even whether or not the Xeloda/Avastin combo will work, isn't going to make them come back negative or make my tumor shrink.  It's a mantra I repeat daily to myself.  I figure, if I say it enough, I might convince myself.

Are there maybe just 1 or 2 people to whom you can open up?  I have a large extended family and while they all are of the "if there's anything I can do, just let me know" mentality, I really only open up to one cousin (she's my rock) and my husband (who is absolutely incredible).  I sometimes share with my mom, but I prefer not to just because I can't imagine how it must feel to know your child is suffering.  I don't want her to suffer more. Plus, my dad is ill and she's got enough on her plate dealing with him.

Have you considered a support group? Maybe then you wouldn't feel like your upsetting family? I'm seriously considering trying a support group my onc and rns told me about. But, I've never been the support group type, but maybe then, like you, I won't feel like I'm upsetting anyone.  Who knows, at this point I'm willing to try anything.

I will keep you in my prayers.  Hang in there, we will both get through our respective nightmares. This board is a huge help.

Diana

Makratz

Tater, I hope you feel better too. ((((((((((((((((HUGS)))))))))))))))))))

tater55

Thanks, y'all! I do feel better today. Actually I am considering the support group where I get my treatment. I also have my NA sponsor that I can tell *anything* to.  I've got resources, I have to humble up and use them. Like I said, it's a different game the second time around.

elainemd

Robin,

How did you know you had mets to the lungs.  I have been in and out of the hospital since 11/1/09, they say my lungs have ground glass infiltration.  what does this mean?  is this a sign of cancer.  pulmonologist is going go give it another 2 weeks before lung biopsy is done.  what were your signs and how did you find out?

RobinWendy

Elaine,

I PM'ed you.

Robin 

Pat634

dmoh -- in what way does your arm ache?  My left arm is pins and needles feeling dont know if its a pinched nerve in my neck or what.

Tater-- your tumor markers kept going up? by how much, a few points here and there or did they double over a couple of months or what?

lindainfla

Diana:   I wish I could reach out to give you a hug.  I am a recent breast cancer survivor and I work in a large hospital.  I meet LOTS of women who are living with Stage IV cancer and doing very well. The treatments just become a part of their lives...their very full and active lives.

Hang in there!  It's OK to be pissed off!

dmoh

Sorry, I haven't had a chance to go online in a few days.  Busy with my children and tying up loose ends at work.  My last day for awhile was Thursday, 12/3.  The guilt I had been feeling has been replaced with a sense of calm and control.

Pat634: The pain I was feeling in my arm was a dull throb all over coupled with pins and needle sensations, plus sharp, stabbing pains in my deltoid, tricep and chest areas.  Notice I say "was feeling."  That's because since completing my first cycle of Xeloda (1 wk on/1 wk off), I would say my arm pain vanished around the second or third day of my "off" week, which was last week.  I am thrilled and hopeful that this is an indication that the Xeloda/Avastin combo is working.  I haven't been without some sort of pain in my arm since mid-Sept., so it's wonderful to be able to move it around painlessly again.  Definitely see your doc about your arm pain and insist they and you get to the bottom of it.  I blew mine off for over two weeks thinking I'd pulled a muscle while exercising!  When it didn't go away and routine labs came back with elevated markers, then I knew something was up.  I just wish I'd jumped on it sooner...

Lindainfla: Thanks for your encouraging comments.  This whole forum is like a big virtual hug!  I am feeling better these days and am very hopeful and confident that this new treatment will work for me.  This whole "cancer" thing is just a big thorn in my side.  Even if I can't "beat" it, at least I can try to "manage" it the best I can.  I've just begun my second cycle of Xeloda (just downed my 4 morning pills about 2 hours ago!) and am anxiously awaiting side effects to kick in.  I've been there/done that so many times with chemo already, I should be used to this, but no.  Deep down I also believe that side effects are an indication that your meds are working!!

Diana