Any one else falling apart?

Anonymous

Kathleen - the sagging and small, be it a warning to have them done the way you want them, life is too short to have yet something else not the way we would like.

The dream I had night before was like being healed by some energy, be it angels or ETs, LOL, I don't care if they did it for real.  First the heat in the area between breast and nodes surgery, so hot, it woke me and I realized something was wrong there, something left after the surgery even if mircoscopic - which is true since the surgeon  left a positive margin right lateral.  Slept again, then woke to some 'work' being done, didn't hurt, just knew someone was doing something... tried to wake up but kept being put under so to speak.  Then woke to thispulling at my neck on what was a long corded area, taking something out there, didn't hurt but very real, but again I could not come out of the in-between consciousness, not even to go to the bathroom and I usually go two times a night.  Spent the rest of the night dreaming reasonable solutions and storylines to explain away this dream.  

Nope, I don't take anything for sleeping, nothing that could cause this.

Today I am not falling apart so much.  The integrative medical physician called, talked for 30 minutes, listened to me, no rush, asked questions, even counseled how to help my pet.... I luv this man, he is a dream doctor.  He has my protocol ready to up the amps from what I have been doing, I was on the right track, esp w immune system.  He is testing for metal toxicity, ordering a bone scan, probably a CAT scan, and has the injections and IVs I have wanted, can refer me for IPT when and if needed, and cryoablation treatments if needed, and he understands the estrogen overload I am getting from the neighbor's outside wood boiler.  I am in heaven and cannot wait to go see him.  

A week ago, I was screaming in frustration and anger.  Now I see why my path was blocked, I would have been down the wrong one for me.  

But we do have to move - the neighbor's prof installed 22-ft stack "fell off" his wood boiler AGAIN and the fumes and smoke are in our house so thick today.  IDEM and health dept coming tomorrow.  Hope they blow the thing up and haul him to jail for attempted murder of me, Hubby and pets.

Hugs to all.  Hang in there!

jennyboog

@rozem...You don't have to be stage III to be falling apart, BC takes a toll on us all no matter what stage.  I wish there was a magic pill that takes the fear away but unfortunately I have the same problem.  All the veterans say it does get better with time but is always there so, we just have to wait I guess.  I have noticed it has got some better for me, I'll be 2 yrs in July but I also stay super busy on purpose (always have a project & about to go back to work) that way my mind doesn't have time to think about it.  I didn't take anit-depressants but many on here have and say they work for them.  It is still early for you, I just got to where I feel good, mentally and physically, give it sometime and until then take the antidepressants if you have to, if they work and if you can deal with any SE.  They will get you through this time and you can get off them later, take it day by day and sometimes hour by hour.  .

kmccraw423

Essa ... good advice!

rozem

thanks jennyboog

i'm going to take the pills

this isn't fair for my kids, i need to pull out of the darkness for them and if i need medical intervention to do it, so be it

i saw a phyc at our cancer ctr - she made me feel worse, mental imagery, take your days in chunks blah blah blah, like if i could shut my brain off I wouldn't do it

thanks ladies - keep strong

Linda-n3

Rozem, you sound like you might find mindfulness-based practices helpful.  I see a wonderful counselor who was an oncology nurse before she became a counselor, and she has worked with me to avoid more meds.  I can't say I am fully functional physically, mentally, or spiritually, but I can say I am in a better place now than I was 3 months ago and even 2 months ago and even a week ago.  I have my ups and downs with the brain and thinking, and I am learning to recognize that thinking for what it is - just thoughts, not necessarily reality.  The fears and anger get worse when I am so fatigued and in pain, and the brain just goes on a big trip with more fear, more anger, less sleep, more fatigue.... etc in the downward spiral.  When I can sit back and acknowledge that indeed, I am angry, but I don't have to wallow in it; indeed, I am afraid, but that doesn't have to paralyze me; indeed, I have way too much on my plate still yet, but I can do one thing at a time and make a difference.  I freely admit that I am depressed a lot, but every time I do something fun, I remind myself that I had some fun and enjoyment. 

I don't find mental imagery helpful at all, and it really p***es me off when someone tells me to get myself better organized, manage my time, pace myself, blah blah blah as  you say!

I don't know which pills you have had prescribed.  I have been on several for chemo-induced peripheral neuropathy, and had also tried a couple last year for depression, and have had miserable SEs with every one of them.  Currently I am trying to get off Effexor due to SEs, but I didn't realize it takes a LONG time to discontinue it because it can cause a withdrawal syndrome (which I managed to experience last week - ugh!).  In any case, if the pills work without SEs, they can be a BIG help.  Some of the early SEs resolve if you can hang in there with the meds for a couple of weeks.

Best wishes to you - this is just not easy.  Wish I had a magic wand for all of us!

jennyboog

@ rozem...I'm no expert other than my own experience and what works for one doesn't always for the next.  But I say get through each day and if that means poppin' a pill that day then do it, if it will make this stage in the process easier.  As time passes and you feel more reassured then wean yourself off and deal with anything then, you'll be stronger.  You have enough on you that you can't control, this might be the one thing you can.  It's rough at the beginning, I was a total wreck and looking back I probably should have taken something.  I'm sorry the therapist didn't help, you'd think they'd would have someone better at a cancer center. This site was & is my therapist   Hang in there. 

Anonymous

Yesterday I was told to light a candle and read a good book. 

Like I have time when the insurance company is not paying half the bills and I have to re-file and deal with all that everyday.  And the clinic did not use the right codes.  And the other insurance co is not honoring their supplemental  insurance payment because the hospital coded me at ONGOING BC for years it seems, so I was a pre-existing condition when I started with that insurance company.  And the three doctors I have dealt with did not run any tests at all worth proving cancer in bones, organs.  And the surgeon left a positive margin that could have been avoided. 

I have been on my own from the beginning.  Finally found the integrative medical physician, who is ordering scans, and have designed my own protocol to heal the cells.  But that did not come with lighting a candle or reading the novel of my preference.  

I want to go to a cabin in the woods and read.  Sit there.  Not make calls or figure out what my dang password and online ID is to get in to my bank account.  But no.  It does not stop.  Filing bankruptcy to escape this outside wood boiler next door, foreclosure, finding a new home with no money to move since it all goes to my survival, packing, family and pets.  Read?  For fun?  I would love to and I will someday.

Told her this is like being stuck in the movie Groundhog Day but it is a nightmare.  And the whole thing is about perception.  Not being angry, being patient and kind, and not feeling desperate.  

She said I embarrassed her, but no I said, wht she suggests is true... the candle and reading is what we are supposed to do.  We are told to have more joy, dance, be happy, be peaceful, take time for ourselves.  But then there is life, with cancer, and peace and joy???? that does not pan out.

Tonight I will watch Grey's Anatomy and Private Practice.  My version of Thursday's candle and book.

Linda-n3

Essa, you have every right to be angry about this whole mess!!!!  I know exactly what you mean - it is so easy to tell someone to "go relax, let it go...." and meanwhile everything is falling down around your head. I certainly don't have any answers, but can give you all the sympathy and empathy and an ear to listen, an eye to read your story.  I think you have a story that needs to be told LOUDLY - so if you are in the mood, go ahead and scream it out!  Sending you lots of kind and loving thoughts - knowing they won't do anything practical to help make the crap go away, but please know I am thinking of you and keeping you in my heart.

Kay_G

Essa, (((((hugs))))))! I have had a few issues with my insurance co., but nothing like you're dealing with. I can only imagine how frustrated you are.

Anonymous

Grey's Anatomy was awesome last night!  I needed that.

Realized I do "light a candle and read a good book" more often than I think.   A few weeks ago ordered Josh Groban's CD and, in the Suburban Hubby and I drive through the country every single day for an hour or three, we play that one song on repeat......  YOU RAISE ME UP so I can  stand on mountains, you raise me up to walk on stromy seas  http://www.azlyrics.com/lyrics/joshgroban/youraisemeup.html   Some days I am not in a good place and am even angry everything there is, some days it works for me.  Now, when I wake in the night it is the song playing in my head instead of some inane commercial jingle or Lady Gaga song i heard in a restaurant LOL.

Anonymous

Hubby called  insurance, clinics, surgeon, doctor's office, got some things straightened out but we will see if it really is done right regardless of efforts.  In meantime, resultss are due back for tests run last week, incl bone scan. And two of the places that were not yet paid, no fault of ours, are needed to give results, so will see if they do or refuse since there is a bill. 

One place had Hubby down as having the BS surgery, me as the one insured and didn't note our relationship.  

jennyboog

Oh Essa, I am so sorry you're having to deal with that ins. crap.  I've only had to do a couple things and it drove me crazy, I can't imagine dealing with what you have.  What a mess!  I hope your hubby can help, I've used mine many times when I've had enough and he can be an a$$ on response when needed to get things done.   

financegirl

I am on Armidex and the SEs are bone/joint pain.  It happens usually about 2 hours after I take it and lessens as the day goes on.  My biggest fear at this point is that these are the same effects that it would seem that one would get when there is a cancer recurrence.  Other than the screening tests, how do you know the diff?

Love puce's comment above about now that treatment is over everyone thinks you are or should be back to normal.  Things my family said they'd do to help, half the time never got done during treatment - BF and friends did EVERYTHING for me.  I called my sister one day and went off big time and her comment was "even during chemo you seemed to do so good".  I explained that it was friends there when I was sicker than a dog and anytime I was well enough to go out, it was only b/c I felt up to it.  Now my hair and nails are slowly returning, I think it's even worse b/c the noticeable signs of my disease are fading.  I feel for anyone presently in chemo b/c as I told my family - "I have never felt an exhaustion, like the exhaustion felt during the last few chemos, especially since chemo's effects are cumulative".   

fredntan

argghh I know what you mean financegirl. I'm almost 2 weeks out from chemo and my dh/sister are worried questioning why I've suddenly got no energy/have achy everything. so annoying. oh but at least I get new boobs oh yeah right. after shitload hours sx in the fall and then more sx. Oh yeah new boobs sounds great. sometimes I just feel like telling people to shut the hell up. but I know some people would just fall apart if I told them that.

Linda-n3

Fran, the fatigue has been one of the worst SEs that CONTINUE - I am 15 months PFC, still need about 12 hours of rest a day.  Everyone says I look great.  Everyone assumes I am fine.  Between the fatigue, neuropathy, and continued pain, I am NOT fine.  I had to request reduced responsibilites at work - talked with my boss yesterday - feels so bad to admit that I can't do the job I want to do. 

Talked with my MO - she says "yes, it takes a while" and then when pressed, she says maybe YEARS to feel better.  But I AM better than I was 6 months ago, so just try to keep a positive attitude. 

I don't know what type of chemo you had, but there can be a "coasting" effect, so that you initially are doing better, then SEs hit again several weeks after final chemo, so tell DH/sisters to relax and let you heal at your own pace! (tell them with love, of course!).

Anonymous

Hugs to all - doing well.  Added this to my favorites now so will see when posts come in.  Now I almost feel like I have a handle on so many angles, not all.  I am very willful, not good for me.  Do you believe that the one clinic still has not sent right diagnosis for the ins to pay for the ovarian cancer test?  Still, after all the requests.  But that is the least of worries, foreclosure to flee here will be up in six months or less, so looking at homes and thinking about an auction or something to keep this simple.  Less stress, more happiness to all.

jennyboog

Sending you hugs Essa, I hope things get better soon.

Reality

Yes, Linda - The darn fatigue - I run around like a maniac in the a.m. as I know I will crash in the afternoon - Even if I pace myself in the a.m., I am still exhausted in the afternoon. I eat healthy, exercise, etc....but am often so tired - not even tired, just feel like limbs are heavy and weak....and yes, the pain. I had my last rads in Jan., so I had so hoped that I would feel great this summer - I know I was too optimistic and I am very impatient - I am glad to be alive, so I feel guilty complaining, but I am in constant pain - lumpectomy side arm and breast - LE has "almost" been ruled-out, breast sonogram shows "something" that is "probably" not malignant, but I have been referred to BS. X rays show "something" in arm, but "most likely" not malignant. Yes, I am glad for the "probably not malignant" parts, but I want more definitive answers - somehow, "probably not and most likely not" are not good enough.....waiting for bone scan report - I will scream if there is  "probably" or "most likely" in that report.

Positive news: My BS does not put up with bs! She will test and research until she finds a way to help me. I cannot wait to see her this Friday! She always gives me a good hug - I need one of those hugs. 

Reality

Dear Essa - more hugs to you! SO sorry for all you are going through - I know what you mean about less stress. I rent, so I did not have to go through foreclosure - My landlord is great - he allowed me to make bi-monthly payments while I was in treatment and gave me a free months rent for New Year's gift. I did, however, call the bank and tell them to come get my way too expensive car. What a relief it was to come home one day and see it gone - a relief, but still sad and disheartening. My employer of ten years was not so compassionate - He convinced the school superintendent that I was no longer "connecting" with the Alternative Ed students I was teaching. (This was just before diagnosis, when I was feeling very ill). I was offered the choice of retiring from teaching early and having a good work record, or having tenure denied and have a negative reference. (I changed teaching areas, so I was not tenured). My union rep advised me that I could fight the choice the school was giving me. I told her no thanks, as I would not want to remain at that school anyway. So, I retired at half the monthly income I would normally have retired at. Oh well, karma kicked in and a similar ultimatum was given to the principal who scre@@ed me over. He has since retired "early" due to conflict with the super.

I have simplified my life a lot since diagnosis - I sometimes miss my old life, but as time passes, I miss it less and less as I am finding some peace in living more simply.....Peace to you, also.

marijen

This is an interestingtopic, I thought I'd BUMP it.

stephilosphy00

I've finished chemo and surgery now, I thought I would feel better after finishing the most difficult part of the treatment, but it doesn't happen! I still have constant fear about what the future holds. It is hard.

marijen

Me too! I've seen a lot of recurrance after a few years and it's usually mets

wrmbrownie

Me three! I'm a year and a half out from treatment and the closer it gets to 2 years, the more anxiety I have....

Daczahow

I am struggling as well ! Finished all active treatment and scans are clean ! So why do I keep feeling like I am just waiting for the bad news ? Stage lllC just feels like a stepping stone sometimes! Like I am on a tight rope with no net! Just one of thoses nights I gues

sugarplum

marijen, thanks for bumping this! How well I remember my first few months after completing treatment - I'd always been a hypochondriac but it ramped up a thousandfold. First there was a spacey lightheadedness which I was sure was brain mets (I then read that the brain is usually the last met to happen), then I had an achy tailbone (resulting in a nuclear bone scan which turned up nothing - ended up getting a wedge-shaped cushion for my chair at work), then my right hip finally gave out on me & I had a replacement (due to arthritis). I still obsess about recurrence every day (not if, but when), especially in light of Olivia Newton-John's recent bone metastasis after 25 YEARS

One of the few things that helps me is hearing from everyone on these boards - there are so many who feel the way that I do, it's nice to be among people who GET IT.

All my best to all here with me - Julie

nayda985

so glad I found this thread...I too can't figure how to get in the flow of things now that I finally completed everything and now on Arimidex/Zoladex....I have high anxiety about the unknown...I am so emotional...I cry at the drop of a hat some days...I am trying to take it one day at a time...hoping this too shall pass:)