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tammymarie1971
12-24-2012, 06:33 PM
Dearest ladies, I am really struggling with anxiety..it just pops up out of the blue...I was taking 10mg dex and have reduced it to 6..I don't know if the steroids were making me anxious or if it is the reduction that has triggered it, also I am taking lactulose for ammonia in the brain..apparently this happens from the liver, also I guess I went from a couple of weeks ago totally yellow and being told to say my good byes to my family and now I am cooking and cleaning Christmas shopping, wrapping etc...I guess a rollercoaster is what it is...Also I am on dilaudid for pain which I don't have much to speak of but this palliative doctor loaded me up with all kinds of pills before I left the hospital. I have hydromorphone which I am supposed to take every 12 hrs(long acting) and then dilaudid every 4 hrs for breakthrough and then ziplocone (or something) for sleeping which I never took before I went into the hospital and then I have ativan which I hate to take because I got addicted about 5 yrs ago and ended up on the psych ward for a week to get off it...So I guess what I am asking is what is with all these pills and are they contributing to my anxiety. With all these pills at my disposal I feel like I could just NUMB myself, but I know that it will bite me in the rear later..
I also can only sleep like an hour at a time and wander the house in the wee hours and that can't be helping my mental state....

I also get my 3rd tdm1 on the 3rd...which is the doctors actively treating me with some hope right? This crazy mind of mine...but they said there was no more they could do for the liver and I am alot less yellow, I have energy enough to take care of 4 kids and the house and I can't get my mind around everyone getting things ready for hospice just a few weeks ago...Maybe I am going crazy from toxins floating around my system..They could only put a stent in the main duct of the liver..apparently every other duct or whatever was squeezed shut??? Shrivled liver? I am drinking hot lemon water to try and neutralize toxins???

I am so sorry for this crazy rambling on and on with it being Christmas eve and all, but I knew you ladies if anyone would understand!!!! My husband tries...but then I get irritated with him(steriods??) and feel like I am burdening his already heavy shoulders...

So maybe it is the toxins causing anxiety...It feels terrible...like I want to do ANYTHING to make it stop!!! bang head against wall...numb out with pills or something...
Anyway...mostly I just wanted to vent I guess....
My liver enzymes were really bad at last blood test (2 weeks ago) all of them and my tumor markers went from 275 to 399 this after 1 tdm1...hopefully cell death!!
Anyone else have experience with the ammonia thing...I don't know if it is something you recover from or not..I'm not allowed to drive because of it too.
I sound like such a mess, but I actually feel better getting this all out in writing...so even if you have no advice...thanks so much for letting me vent.... I can't believe the fondness and love I feel for you ladies and the struggles some of you have I just think Wow if they can do it.... I am so grateful that you guys are out there. Thank you.

NanaJoni
12-24-2012, 07:15 PM
Tammy - You are going through so much right now so, of course, you are suffering from anxiety. Just the dex used to put me over the top and you are dealing with so much right now. The meds, lack of sleep, side effects, doing a clinical trial and just throw in the pressures of Christmas. Luckily the Christmas excitement may ease up some tomorrow. You know you can always vent here and will find many who understand and have been on that very same rollercoaster. I know you yearn for some level time and, hopefully, you'll find a way to let go and get some rest very soon. I remember freaking out in the ER after my first TCH treatment. The ER nurse said in her best East Tennessee twang "Honey, did they give you something for your nerves?". I bit her head off and said very rudely "Yes, they gave me xanax but I only have to take it AS NEEDED!". She very sweetly twanged "Honey, you need it." After we (me, my husband and the nurse) stopped laughing, I felt much better. And then I took the xanax 3 times a day for several days and the bad times passed. Then they came back several times (and occasionally still do) but I was much more able to handle it. I'll be keeping you and your beautiful family in my prayers and will be waiting to hear from you again soon.

karen z
12-24-2012, 07:29 PM
I agree with Joni- way too much of everything (likely pills too) going on here.
Get through Christmas and try to then find (if you haven't already):
a clinical psychologist (hopefully someone who specializes in illness) to talk to or a cancer counselor through any type of cancer wellness center by you (you usually do not have to belong to a particular hospital in the US).
It sounds like you also need a VERY VERY good internist or psychiatrist who can give you the minimum meds needed for free floating anxiety and sleep issues (generally one pill can help with both). I agree that xanax works well and fast- but it is very much an "in and out" of your body drug. Another good drug for anxiety (which works well for sleep too and is longer lasting) is clonazepam. It is a very good slower acting drug that helps calm one during the day and helps with rest at night. It sounds like you got loaded with a lot of drugs that you might not need- which might be causing some problems. Please find someone to talk to right away. I think it will help a lot. If you don't like the first person you see........shop around (the same way you would with an oncologist). Let us know how these strategies work out.

Cathya
12-24-2012, 08:06 PM
Tammy;

You are going through so much at such a sensitive time of the year. Lack of sleep just makes everything much worse. Try to slow your mind and live just one day at a time....one hour at a time....that is live in the moment. Christmas is very stressful with all the shopping, cooking, cleaning so you might have to live with some disorder and just accept it. Don't feel guilty about asking your husband for help. I'm sure he just needs to know what you need and guilt clouds the ability to express your needs. Be still and remember that right now, at this moment you are ok. Try to relax and enjoy your family and let them enjoy you. Have a very merry Christmas.

Cathy

KDR
12-24-2012, 08:46 PM
Tammy
We get a pass on certain things...and your taking meds as you see fit is one of them.
Many good things abound in your post:
1) you've gotten T-DM1 (and yes, the spike could be rapid cell death, I'll bet it is), 2) you have a great family behind you, 3) if your liver was that bad, you wouldn't be getting T-DM1--you wouldn't be allowed to.
So focus of the beautiful things in your life: children, hope, and BELIEVE. You must hang in there, much is coming our way.
Yours,
Karen

BonnieR
12-24-2012, 10:34 PM
You have received some good suggestions here. I agree that the drug cocktail you are on could be wreaking havoc with your system. And they could be fighting with each other, with you in the middle! It would be great if you could find a professional who would manage your medication regieme.
I recall after having part of my lung removed because it was mistakenly thought to have cancer that I was beside myself with grief and dispair. It just seemed like the most horrible error. And of course, it was a bad mistake. But I was behaving out of character. I finally realized my mood was being terribly affected by the pain medication and once I stopped it, my attitude improved alot. So, even though you have LOTS of reasons to be upset and anxious, I wonder how much is drug related. I do hope you can think in terms of "this too shall pass". What is happening is temporary and can be addressed. It wont always be like this.
Christmas is tomorrow and all that stress will be behing you. Hopefully you can find pleasure in the day with your family. Just live in the day. Thank you for sharing with us. We are always here to listen. Keep the faith.

Redwolf8812
12-24-2012, 11:11 PM
All sound advice. I'm just chiming in to let you know that I'm praying for you and yours. Chin up. Better days are ahead.

- Penny

Jackie07
12-25-2012, 06:43 AM
Ditto to Penny's and everyone else's postings.

Come here to vent anytime. We are here for you (and each other) and we are listening.

sarah
12-25-2012, 07:00 AM
glad you decided to vent here. good advice. many of us have found we needed either anti-anxiety or anti-depression drugs for a while because we were going through extreme mood swings. The Femara may be causing some of these things.
take care, it will pass
watch some funny movies
hugs and love
sarah

Ellie F
12-25-2012, 07:48 AM
Just wanted to chime and to support all the good advice that's been said. Christmas is such a difficult time for a lot of ppl let alone fighting this disease. I totally understand the wandering around in the early hours as I do it frequently and have done since diagnosis. Sometimes I have huge anxiety times and very often little things upset me way too much.i have also considered anti anxiety/ depression meds but never seem to be able to get to tell the dr how bad I feel.
Really glad you have been able to share this with us and pray that after Christmas you will get the right help.
Hugs from England on Christmas Day
Ellie

BonnieR
12-25-2012, 02:08 PM
Ellie, I felt so bad reading that you feel the need for some anti anxiety meds but are not receiving them. I hope you resolve this new year to speak up for what you want. I don't know why we can be so timid but I was also for awhile. I could have used meds from the beginning but did not request them for awhile. Now I take a low dose Lexapro and Ativan for sleep. The Ativan was also helpful for high anxiety situations. Still is!
Keep the faith

'lizbeth
12-25-2012, 05:05 PM
TammyMarie,

You've gotten some great advice.

I remember how crazy the different medication affected me, and the incredible stress during cancer treatment. It was fricken' awful. IV Benadryl was the worst, made me a looney, hypertensive insominiac. My liver enzymes started going up, scared the heck out of me as I thought it was cancer - but it was the Benadryl of all things.

I think the hardest part for me was asking for help. I had such a difficult time and was used to "being my own doctor". Worse yet the treatment affects memory, speech, emotions, etc. You end up in the worst state of your life and now you have to try to rationally explain to a newly met doctor what you need. It is rough, cause with all the side effects and stress it makes it even more difficult to figure out what you need and how to ask for the proper help.

Hope that you will feel better and better every hour and every day. And don't hesitate to talk to your doctor about the struggles you are having.

Send love and Christmas wishes your way!

PS NanaJoni, I'm still chuckling at your story . . .

fullofbeans
12-25-2012, 08:12 PM
Tammy I agree with all the advice above and also indeed it does seem like you are on a lot of meds, Dex especially will not help with calming down.. Remember to focus on the things that you have 1)a healthy georgeous family 2) a treatment that seems to be working since you are now up and going.

Try if you can to take some time alone to simply be grateful and only focus on that,and that only, whatever was said before about the hospice ect.. and breathe..

karen z
12-25-2012, 10:58 PM
Hi again,
You have gotten some great advice. Remember to slow down and breathe and that we are thinking of you and sending good wishes your way.

tammymarie1971
12-25-2012, 11:21 PM
I am so grateful for you all...Thanks for your replies....And I am grateful that I am less yellow as this must mean some improval in the liver!! I will take advice given here and continue living my life, I know the Lord has plans for us all and if He isn't taking me home yet there must be a good reason... Maybe I'll get to see my daughter graduate in June!! I did get to see my first son graduate and I never thought I would 8 yrs ago!! I'd also like to see my 10 yr old to at least 18!!! But I don't know what my future holds only who holds it,(which is enough) now if only I could get that through my head when I start letting anxiety in !! Anyway, thank you for being here!!!
Tammy

karen z
12-25-2012, 11:39 PM
Tammy,
Anxiety (especially nearly constant) is a terrible thing and you can and should get help for it. It will not solve all issues but will give you some room to breathe and enjoy the day to day moments with your family and friends. Again, please try and find someone to talk to (clinical psychologist/cancer wellness therapist) and see if you can get off unnecessary drugs and focus getting on something that might help with anxiety........and too many thoughts. I know what it is like and you will do much better with something that can help take the edge off. I don't know what that would be in your case but there are some drugs (see my first post) that I am guessing would help a lot. You should not have to suffer through without relief. Try also (very hard) to take care of yourself and do things you enjoy and that distract you. Easy for me to say but it really helps (this I know).

tammymarie1971
12-26-2012, 12:20 AM
I've tried several times to update my signature, can't figure out how to make it less than 2000 characters?

sarah
12-27-2012, 06:30 AM
Also try deep yoga breathing, concentrating on your breathing - slow inhale and even slower exhale. your tummy enlarges on inhale and flattens on exhale. close your eyes, and concentrate on your breathing.
read a book in bed at night, it's the best sleeping pill and very distracting.
smile even if you don't feel like it, the muscles for a smile have some amazing effect on your endorphins and help.
and most of all, remember you're not alone.
hugs and love
sarah

mamacze
12-27-2012, 07:29 PM
Tammy, The love, advise and counsel you have gotten from your her2 sisters has been so nourishing. May I chime in and recommend meditation, Carolyn Myss, Eckhart Tolle? One size doesn't fit all, but anxiety can be an energy drain at a time when you want to focus on the fullness of life. You are right to reach for anything that will bring you peace. These are suggestions that helped me. Please stay with us and keep us posted on how you are doing.
Love and Hugs,
Kim from CT