Lost my mind on chemo, real living nightmares

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I am posting currently with a group doing chemo in my same time frame, and made a few posts in other places.  I have run into a very scary problem and would like to hear if anyone else has had this happen to them.  Below these first couple paragraphs is a summary of my cancer and treatments, but I wanted to start talking about losing my mind.  I have just spent the entire morning associating everything I do, see, or think with a portion or piece of a nightmare from somewhere ago, and I don't undertand why I feel like I'm experiencing an awake and dreaming state of strangeness.  It's like having a dejavu experience for six hours straight, which my understanding comes from not enough sleep.  I have been taking a sleepy antinausea, phenergen, for last two nights, just to break the cycle of six straight nights of nightmares and a new symptom of sore feet.  And while I finally got sleep for two nights, this morning I was truly unnerved by pure insanity taking over my whole sense of well-being, scaring the daylights out of me, and I can't make it stop. 

I have had plenty of mental problems, depression, anxiety, panic, been thru drug-induced hallucinations in hippie days, had 105-degree pneumonia in hospital on Xmas Day, and got so wierded out by a bad psych counselor when I was around 30 (I'm 60 now), that I started seeing in 1-dimension where people looked like cut-out cards, but THIS, this awake dreaming state is one of the most disturbing mind games I've ever had to play.  Aside from it just being chemo poisoning side effect, the only other thing I can figure is I bought some Boost type vitamin shake with Glucerin or something in it for diabetics (I'm not diabetic, but sometimes want some vits, and this brand I've drank it before and liked it) and I drank it about when the second chemo came around and bit me in the behind and opened up what wound up being a whole week of nightmares. 

My situation is, when I got breast cancer, I was unable to exercise like I used to, didn't eat right because I can't cook anymore, and I'm 70 pounds overweight.  I have Invasive Ductal Carcinoma, and I just found out instead of having just one large growth (no one has ever officially gone over my mammograms), an ultrasound showed I have three approx 2.5cm growths and then an unidentified one, which I assume is one I happened to see at my regular woman's doc mammogram offices, and I saw my name on a mammogram as we discussed other things, and I asked this really good tech is this mine and is this a picture taken from above, and the lady who had done my pictures said yes.  It looked about 5cm, so I assume this is the unidentified one found on ultrasound, and it is located just behind my nipple part.  So, their plan is give me ACT treatment, followed each time with a Neulesta shot, with AC x4 every two weeks, and T x12 every week, and THEN do the surgery, following which I may have Rads and probably take a Pill for a couple years.  There has been some lymph node enlargement in various places in my breast.  My doc calls it a very invasive type of cancer with an inflammatory presentation (my boob was hard, swollen, painful, and had a red mark on the skin).  It is described as Grade 3.

Okay.  So, I finished my second round of AC Thursday before last.  The first round, I had a weekend of nightmares, fever, sweating, terrible body aches, woke up every couple hours, got up one morning at 3am.  BUT after four days, I started to improve a couple inches per day, until by about Day 11, I felt almost normal and could go out of the house.  Second round, I was expecting the same thing, and thru the weekend, it was just like before, except I didn't have to wake up and get out of bed in the middle of the night.  Also, a new side effect, I had very painful feet.  But here is where I began to lose my mind:

I thought I was coming out of the worst few days, just like the first chemo, but WHAM, I felt exactly like I had just gotten a second chemo, was knocked back really hard for another three days, lots of nightmares (I hardly ever dream), really painful body and feet, fevers, lotsa misery.  So, I wake up yesterday and notice my aches aren't as bad, just had a trace of a nightmare before I woke up from solid sleep, and thought I might make it.  But last night I woke up, coughing up blood.  I finally decided it was probably coming out of my stomach, as it has been bothering me a lot this time, but did worry me as far as a lung problem, so am waiting to see if it happens again.

So, when I finally woke up this morning, most of pain is gone, think maybe I'm done with the worst, but... ALL MORNING LONG, nonstop, everything I do, everything I read, everything I think... it all seems connected with some dream I've had years ago, or recently, or this kind of dejavu experience, and I almost freaked out about an hour ago!!!  I am awake but dreaming?!?  What is this?!?  Why am I having double chemo side effects that last twice as long as last time? 

That is what I am asking about, has anyone else had this wierd awake dreaming association with everything I'm doing?!?  I mean, talk about madness!!  I have had mental issues in the past, but mostly depression, anxiety, panic disorder, all coming from a bad car accident that has given me lifelong back pain from fracturing it in three places and has finally disabled me about five years ago (I'm 60 now).

The only thing I could think to do when I began to cry about an hour ago is, take my tranquilizer, my usual pain pill and nerve pain pill, eat fruit and protein and drink milk, drink water, breathe deeply, and right now, as I've been writing this, that dream state thing seems to be lifting for longer periods of time.  But we shall see!  I will know more as the day progresses.  But I figure an entire morning of six hours of awake dreaming is REALLY UNNERVING.

I am so glad to get this off my chest.  I have posted, as I said, in another forum where a few days ago I burst in midweek and said I was getting slammed a second time from the same second chemo, and I was in abject misery, inconsolable.  I went on and on about how I don't know enough about my cancer, etc.  Right after that post, my breast surgeon's doc assistant called me to give me some more results, and I told her I was so glad she called becuz this second chemo was all goofed up.  She really had nothing to offer, so I'm going to make an appointment to see my real breast surgeon just before I begin chemo three.  Maybe he can make some changes in my meds or something, because I cannot MAKE IT if I were to keep having these awake nightmare glimpses day after miserable day. 

I keep thinking they gotta stop this chemo before it drives me mad, or at least make it tolerable with drug corrections and maybe lowering dose or WHATEVER, and I'm seriously thinking of asking doc to forgettabout the Taxol coming up for twelve weeks and just PLEEEEZ do a simple mastectomy and get all this crap outta me.  They can send in a cleanup chemo crew of mild toxins for a while if they want, even a few rads (I will NOT let them radiated me dozens of times the way some girls have had to go thru), but then I worry all the cancer won't be killed and the previous chemo and the upcoming surgery will be for naught, which would be an even worse scenario. 

AND THEN (will she ever shut up?) I find out from doc assistant in that call this week, that the CAT scans showed I had a tumor on one of my ovaries.  Now, get this, my mother's mother died of ovarian cancer.  Mother had complete hysterectomy long before the age that her mother died, so we'll never know what she might have had happen.  But what I'm thinking now is, WHAT IF this very wierd breast cancer that I don't know how come I got, seems so out of place, WHAT IF it has come from that ovary, which I'm going to ask my breast surgeon to remove when he does my mastectomy and send the whole ovary and cyst to the lab.  I mean, WHAT IF?  Wouldn't the biopsy have shown that my breast cancer did not originate elsewhere? 

Look, I live in a town where health care is excellent, Trauma Two medical center, they got a whole woman's cancer center all set up, three floors, skylights, very long "avenues" of offices remiscent of an airport, beautiful scenery out of a chemo room's windows.  But I'm telling you, I really feel like I'm just one more patient in a typical majority treatment plan factory, robots fixing my parts like building a car, and I WANNA GET OFF THIS BUS!!!  GG

Comments

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited March 2011

    Dogeyed,

    I'm afraid I have nothing to offer except my deepest sympathies for what sounds like a true nightmare.....and the advice that you definitely get a second opinion and consider holding off on further treatment until you find some answers. A few weeks of postponing round three to rule out other issues should not make a difference with IDC grade 3 - at least not to my knowledge. BTW, if you are taking methotrexate, that could also explain some of the emotional side effects.

  • apple
    apple Member Posts: 7,799
    edited March 2011

    I'd send a copy of your post to your doctor soon.  That is not right.. you shouldn't have to deal with this type of side effect.  You might be on the wrong medication or... I don't know.. but I'd get some advice from you doc as soon as possible.  Best of luck. 

  • jenn3
    jenn3 Member Posts: 3,316
    edited March 2011

    I'm with the others, you need to see a doctor ASAP, that kind of SE is not something you have to deal with.  It could be the mix of medicaitons, supplements or an allergic reaction.  Please call your doctor and discuss this ASAP.

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    I would definitly seek medical help ... years ago I had severe anxiety and it sounds alot like what you are describing to me ... it is terrifying!!!  Very very real and uncontrolable.  I didn't know what anxiety was at the time - I thought I was crazy (for real). 

    One night ... I had the living sh!t scared out of me (totally on accident but ... it was insanely scary) and something changed ... the anxiety went away that night.  Not sure how or why, but that was it.

    The entire experience lasted a few months ... I hope that helps somehow.

  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2011

    dogeyed, it sounds like you may have multiple issues going on, but I wholeheartedly agree with the others that you need medical intervention STAT.

    First, I haven't ever read of chemo alone causing the prolonged awake dreaming or nightmares you're describing.   But it sounds like you're on enough other meds that perhaps there's some bad interaction(s) going on.  You don't mention if you have family or friends around, but a bc dx & tx can be especially rough without support, so I hope you do. 

    I don't think your BS is the appropriate doc to deal with any of this.  You need to tell your onc and your primary doc (or whoever has RX'd your sleep med, etc.) what's going on.   

    As far as the painful feet, that sounds like neuropathy, a common SE of chemo drugs.  The nutritional supplement B6 should help, but I think you need to let your doctors get you straightened out before adding anything else.

    The solution for feeling that you don't know enough about your dx and that you also feel a bit like you're getting assembly line care may be as simple as getting copies of all of your tests reports (biopsy and anything else you've had) and sitting down and, if necessary, looking up each term.  It sounds like work, but I think you will feel immensely better and more in control if you better understand your dx and can discuss it and your tx options with your medical team. 

    Please call your oncologist's office (or answering service) and report what you've told us here.  And please let us know what happens, okay?     Deanna

  • Esti
    Esti Member Posts: 58
    edited March 2011

    Dogeyed,

    I agree with all of the ladies who are suggesting contacting your oncologist to go over what you've explained here.

    My personal opinion as a person who went through chemo  (and I had severe side-effects that landed me in the ER via ambulance)   is that I'd like you to go to either a walk-in clinic or your ER just to have them check out your BP and other vital signs and explain your symptoms to them.  Not to alarm you.  If I were looking over you, I'd want a doctor to see you.

    The chemo drugs are toxic to our system and it does affect your mind. It can feel like you're in a waking nightmare, where your thoughts and emotions are very foreign to you. Everything feels off-kilter.

    It does get better - I hope that you feel better soon.

  • dogeyed
    dogeyed Member Posts: 884
    edited March 2011

    Thank you all for the encouragement. ESTI, you sort of put into perspective what is going on, since you experienced going to the ER in an ambulance when the side effects goofed you up. You said, "..chemo drugs are toxic to our system and it does affect your mind...where your thoughts and emotions are very foreign..." And FUZZY, my friend, I was comforted by how you felt real anxious for a few months, not knowing what it was, and I believe that is part of my situation. DLB, yes, I have my husband, he went thru cancer and chemo and rads about twenty years ago, so he's been a huge help to me, intelligent man, the calming voice in the storm, and my parents live in this same town, Mom and I talk twice a week, she has been SO open to hearing me even tho she is terrified at the moment, and my father is also a cancer survivor and when I first started chemo and went by their house, he was most encouraging to me.



    ALL OF YOU, I'm telling you, that was one rough day yesterday, and this morning I had some of a nightmare stick with me for maybe twenty minutes and I thought I would have to go thru this again. I decided that perhaps I had lost so much sleep over this endless week of nightmares, that I was unable to separate the two, the dream and wake cycle, and became "the living dead." SO unnerving. So, I was careful what medicines I took yesterday, in hopes of producing a good night's sleep and wake up fairly clear-headed, and I did. But I do think it's just the chemo chemo chemo kicked my butt, and I was at the end of my rope.



    When the offices of the Cancer Center open Monday, I'll call and make an appointment with my breast surgeon (he IS my oncologist, devises all my treatment plans, etc.), and I've made a list of about five items that I want him to explain to me, so I can feel more confident with my treatments, and also to alert him to how hard all this has been on the second go. I will make sure he sees me before they do my third chemo on Thursday, so he can adjust or make changes in meds, dose, and SOMETHING to keep me from breaking with reality and walking on the wild side. He gave me some medicine in response to how much I ached from fevers after the first chemo, so I'm sure he'll come up with some idea to help me. I'm also going to have him put up on the lightbox my mammo pictures and explain where my growths are, circle them, that sort of thing, so I will understand better why they have to drug me to death... he has already said in response to my concerns about not doing surgery first, that if at any point the chemo wasn't working out, he'd go straight to surgery.



    I wouldn't be a bit surprised if he goes ahead and gets me off what AC chemo I've been on, orders some new mammos, and makes a decision as to whether he should move over to Taxol for a short time and then do surgery, or even just go ahead with surgery if he thinks the chemo I've had is enough for him to get clear margins. *SIGH*



    Anyhow, today I am worlds better than yesterday, just shaky, tingly, but less achy. This is how it went before, I gradually got better after the first weekend. But apparently chemo can chew you up and spit you out anytime it wants to and drag it out for a whole week, turning an aready weak and sickly person to begin into a blithering blob of buuuu-sheet. GG P.S. I'll keep you all posted. And if nothing else, if some other poor soul falls off the floor with living nightmares, they'll know what I did with it, and they'll hear you all's voices, too. Thank heavens for these forums, God's tender mercies.

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    Hang in there sweetie.  I am so glad to hear that you are being proactive.  I wish I could be there with you and I hope that you know you are in my thoughts.  I have this as a favorite so I can look for an update on Monday ... and I'm so happy that you are better today. 

    HUGS HUGS HUGS!

  • Esti
    Esti Member Posts: 58
    edited March 2011

    Dogeyed,

    I'm relieved to hear you're feeling a bit better.  You're right - chemo can eat you up and spit you out.  I feel hesitant sometimes to talk openly about the chemo side-effects I went through because I don't want to worry anyone who is going through chemo.

    Hang in there, kiddo!!

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    Just a little note to let you know I'm thinking about you today.  Best of luck with the doc.

  • apple
    apple Member Posts: 7,799
    edited March 2011

    it's very interesting and I think you have a handle on the situation..

    "I decided that perhaps I had lost so much sleep over this endless week of nightmares, that I was unable to separate the two, the dream and wake cycle, and became "the living dead." SO unnerving."

    We have periods of rapid eye movement that are accompanied by dreams.. I had a period of sleep deprivation in college and had real periods of dreaming while awake.. Your body needs those REM periods whether you are asleep or not.. I too imagine that drugs are wrecking havoc on your sleep cycle... at least. 

      I certainly wish you good luck as you get to the bottom of this.

  • dogeyed
    dogeyed Member Posts: 884
    edited March 2011

    Hi Fuzzy and all you other fine ladies,

    This morning I set up appointment to see my breast surgeon doctor the day before Chemo #3.  I will tell him how miserable I was, with two suggestions:  Continue my pain medicine Percocet and add Valium as tranquilizer, and at least one other drug that might keep me out of hell; OR put me in the hospital with a morphine drip for the remainder of my chemo.  I also made sure they put my mammograms with the file on myself, so he can finally show me what I got, where it is, and how large the growths are.  I have a short list of items to cover with him, like what the hell is my prognosis, so that when I'm done talking with him, I'll be comforted this won't happen to me again.  I have also decided that if at any point in the chemo this next time I begin to go into that lengthy nightmare, pain, misery day after day after day, not stopping, I'll go to our nearby Urgent Care and start screaming, they'll call my doc, and he'll put me in the hospital.  That gives me a way out of hell. 

    Oh, and I am doing much better today than yesterday, but nothing so good as I was on the first chemo.  At least I am just on the weakness part of chemo now, where I can barely think and move.  I can deal with that.  I can even deal with a few days of nightmares and physical pain.  But I cannot go through whole another week, tho, of how it was, I'm still emotionally spent, terrified, and not sure I can stay on board with this stuff.  But I also don't want to wind up with recurrence or an incomplete cure or whatever, either.  The doctor will set it all straight, and we'll see what he decides to do. 

    Hope you all continue to manage, I know each of us has our little horror stories about chemo, not to mention how very dangerous cancer is, and so all-consuming whilst dealing with it.  I do sometimes think just how great we patients got it now, cures are better, chemo side effect management is better, whole clinics that do nothing but take care of breast cancer people like us.  Only thing is, this girl OD'd on CHEMO!!!!   GG

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2011

    GG - Getting those details may help you stay on track ... After my first chemo, I went into that "situational depression" for a week.  Finally called my favorite doc.  I cried and ask him to please explain to me WHY ... why am I doing this to my body because I don't think I can ... the reason I love him is because of his honesty and his ability to get in my face when needed.  He said, "If you don't do this, you're going to die.  I want you to live to a ripe old age.  You have to do everything you can so you don't look back and say 'YOU SHOULD HAVE...' and this is why we're doing it..."  He went on to explain the size, growth rate, position and all the medical jargon that I don't ever really understand - but he did hit home with me, and now I at least knew the "why".

    You can do it ... we can do it ... you're so right!  We are lucky that we're not in the 70's, 80's or even 90's!  It is "better" and we will come out on the other end - stronger, with amazing new friendships and peace of mind that "we did everything there was to do".  We can take our experience and continue to help and support others because we were there ...

    Bring your strength to the surface ... it's in there and it's ready to come out!!!

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