Treatment is Hard on the Family

I have appreciated all the help I have received in reading the posts on this discussion board.

I am geno1 and in week 35 of combination (peg + copeg) therapy. I had pre-tx vl = 1.5 mil, 4 weeks vl = 40,000, 12 weeks vl = UND, 24 vl = UND. Before tx, I had a liver biopsy that showed a fatty liver but no fibrosis.

My doctor has prescribed 36 weeks of treatment which may sound unusual to many who are on 48 or 72 weeks. I live in the Persian Gulf region and my doctor is trained in Europe and he is confident in this treatment and how I am doing and that this length of treatment is correct.

Now, back to the title, I have had a difficult time with side effects and sometimes have gone into rages which when looking back are over trivial things but I feel these rages have been hard on my wife and also on my kids although it is more difficult in determining their thoughts. I have talked with my wife and described advice from the forum  that this behavior is "the drugs (poison)" and not me. My wife has been understanding but I feel she is having a difficult time lately. I worry about long-term effects of my behavior on the kids.

I am grateful that the tx will soon be over. I pray for svr and hope the side effects go quickly. I would appreciate and suggestions from fellow forum members who have had to rebuild relationships with their family members.

Thanks again for the forum.

[GrandmaA]

Congratulations on your tx coming to an end very soon. It is a long haul, I know. I did 51 weeks. Children are very resilient and I'm sure they will "bounce back" in time.  

I did lose one "friend" on tx but it was a long distance relationship and I did apologize but to no avail. So it is in the Lord's hands. He knows best. Considering that a certain amount of patients commit suicide I figure I did O.K.

Best wishes to you and God bless.

[hack41]

I am right there with you man. We're guys we have spent most of our lives just letting it go and dealing with all the stuff after we thought about it. While on tx more than once I have just let it fly right here right now. Like women do most the time. I am not saying this is bad for women. It is just not the normal guy thing to do unless someone or something is a threat to you or your family. Stop and count to 10 went out the window with the 1st shot. My wife is for sure more than a little upset with me over this. We have been together for 13 years, She is a great woman. I agree with Grandama A the kids will bounce back I see mine do it everytime I lose it.

My sugestion and most likely I am speaking to myself here is to explain it all again. Say I am sorry as soon as I can. She married me for better or worse not that I have always been the best but, I am at my worst.

Any Males here tried the AD's? I have been thinking about it.

[hack41]

Just wanted add that when we are all SVR we will have much more time to prove who we really are. I will pray for you please do the same for me.

[alagirl]

My kid has no problem at letting me know if I'm being a bit of a butt.  He lets me know that he does not mind taking care of me and that he knows I'm in pain, but if I'm going too far, he has no problem letting me know what he thinks is uncalled for.  I'm so grateful for everything that child is doing for me (I call him a child, he's 19 though) that when he calls my attention to it I pretty much snap out of it.  If I'm really having a tough time I just ask to be alone for a while.  Sometimes its the best thing you can do.

[Imagine121]

Thanks to all. Your thoughtful insights really help. I told my doctor the other day that "I just want my old self back" although I am beginning to forget what I was actually like before treatment. Your words give me encouragement to hang in there and try to make things up to the family once the treatment is finished and the fog starts to lift.

The forum has certainly helped me to keep things in perspective. I feel fortunate that I have the opportunity to seek treatment and potentially clear this virus. And, although, I am at times completely unglued and impossible to deal with, I do have a family that is trying to cope with my behvior and support me at the same time. I look forward to trying to make it up to them.

I have heard others say that this treatment has been the greatest challenge of their lives and I am beginning to agree. I am sure I will come out of this a changed man; hopefully for the better.

God bless you all!

[ladywhy]

We are pretty close in tx...36 wks (I think), and I am double dosing...I totally relate...the counting to 10 'aint working. Though it is not family.....there is someone who is getting the brunt of my intolerant 'unglued' attitude..hopefully I'll be given the opportunity to make it up....
All the best!

[wyntre9]

"I am beginning to forget what I was actually like before treatment."

I'm at week 49 and I was thinking the same thing today.  After a year on TX it's like I'm an entirely different person and I still don't know who that is.

To tell the truth, I'm not sure i want to know.

I'm concentrating on finishing the next 24 weeks and then maybe I'll be pleasantly surprised by who I've turned into.

I have a terrible time with people now which, considering that for the past 20 years I worked with from 600 - 1200 students/colleagues per week, is pretty remarkable.  I have absolutely NO patience with anyone and it's pretty hard to tell a complete stranger that you're sorry, you're on chemo, blahblahblah.  So I keep to myself as much as possible, even in public places like diners, Home Depot, the grocery store.  I just don't have the energy to interact.  I need to save all my strength for the return drive home, or for shlepping bags, or for just remaining on my feet.

And I agree it must be next to impossible for a non-hepper to understand what we go through.  I wonder if it's the same with all other major debilitating treatments or if it's primarily the drugs?

I don't know.

I just keep my head down, dive below the radar and retreat as much as possible.

Just a suggestion:  Maybe you can show your wife some of these responses to your question.  it might help her to realize you're not alone in your psychoses.  *LOL*

And you can reassure her that most heppers suffer from frequent bouts of Rib-Rage.

Wyntre

[beamishboy]

trx affected my relationships enormously...i contributed quite generously to family,friends and lover pre...but became a reactive,paranoid recluse during my 48 weeks...i also-go figure!- felt abandoned,ignored and totally alone(exept for medhelp)...everyone else still hada life......this side effect has been the most difficult phase for me and i am not out of the woods,by any means..hug yr wife&children tite to ya,man.. they are so essential to the quality&value of life..

[alagirl]

I wonder if it's the same with all other major debilitating treatments or if it's primarily the drugs?
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It's the same but different.  Unfortunately for me, my son is used to me being in pain so he is completely unimpressed by that, the little twerp, however, I think the unique pharmacology of the riba antiviral leads to some nastiness that is unique to that drug.  Unfortunately.   (I mean, he'll go fill my scrips or take me to the ER, but there will not be vast amounts of coddling.  Which is good, the matter of factness, keeps me centered.)

That said, tons of oncology patients are on varying forms of interferon and deal with those side effects, pain, depressed bone marrow, overall malaise...

And I dare say there are other meds out there LIKE riba with the same nasty effects that I just haven't heard about yet.  Bottom line, its difficult to live with someone on meds for a chronic illness.  'Specially this one.

[ladywhy]

Amen!

[wyntre9]

I had dinner the other night with a writer friend  and when i (stupidly) tried to explain about the riba-rage she blew me off with a comment about how she was close to menopause and she knew all about rage.

She actually thinks riba-rage is similar to hormonal rage!

Could she be right?????

wyn

[ladywhy]

i don't know.. think i have both............ROAR!!!!!!!!!

[ladywhy]

BTW: regding your previous post up above...we could be soul-sista's......

now I got that song playin' in ma head....Soul sista...soul sista...(that's all i can recall...the needle's stuck.....on the vinyl........???)

[wyntre9]

Both!  Oh jeez...... I can't imagine.... TX is bad enough.

What's up with your TX strategy?

wyntre

[ladywhy]

i keep sayin' to m'self...call the dr., make an appt. w/ his secretary...bypass that np...sit down and have a thorough dialogue. (sp?... kinda looks funny...)
Anyway....4 sure, I am not lettting another day pass....tomorrow Ima callin....guns are loading....
thanks for askin'.

Reg, menapause...i'm kinda hoping, i don't know why...but, I'd like to be like nygirl and get it back after txing.. i guess so i don't have to deal w/early hormonal c#@p...
I have NOT done mch regding. research but..isn't it another bizarre sx...period jus' stopping...no hint of this pre-tx???? must be effecting hormones,somewhat... I'm clueless.

[ladywhy]

"guns are loading.... "
Just an expression...no homicidal ideation...don't want the cops knockin on the door ;)

[wyntre9]

DO you mean YOUR guns or THEIR guns?  

Homicidal Ideation.  Oh yeah, i experience that on a regular basis but I've managed to control myself until yesterday when I went to pick up my laundry, whcih was a pillowcase full of socks, underwear, tee-shirts, pj's, only to find it had been sent out for DRY CLEANING!

Who dry cleans socks?

You'll be happy to hear I managed to suck it up and walk semi-calmly away.  (But what i was doing in my head to the idiotic attendant......)

wyntre

oy

[alagirl]

I've had some rages, mostly at the expense of my best friend, I hate that I even have to confess this because I feel like such a heel, but anyway, my son won't let me get away with it - he's a lot like me that way - I wouldn't put up with it either, but I kind of know I can with my best friend so when I'm in a whole lot of pain or the riba is literally making my skin crawl, or my bones are aching because of grotesque quantities of epogen, I have to make her leave so I don't take it out on her because she'll let me do it and I just don't want to be that way with her she's been so good to me.  

And I'm not going through menopause but I've been around and lived with many people who have and I have to think the riba is worse in terms of the type of attitude or riba rage it brings on.  (In short, no offense to your writer friend, I'm sure she's a good friend and all, but she probably doesn't have a clue what you're going through, her menopause notwithstanding)  There just isn't much I've seen to compare with this tx in terms of its effect on people. Probably there are other heavy duty tx's that make people suffer badly, but they are prob oncology tx's and the like.

I've been thinking about you a lot lately with all that you have going on.  You having to move in the middle of all of this and then get upacked again?  Too much.

I have a good deal of guilt over my son having to schlep me around to all of these doctors on no sleep then go straight to work.  He's having to drop out of college in his freshman year and he's not going to go back until I'm through tx.  It was just too much for him to take care of me, go to school full time and work full time.  I am such a control freak and I really thought I was going to be able to do this tx so much more on my own terms than what I've been able to do.

Homicidal ideation - actually... I find it oddly calming at times... LOL j/k

[wyntre9]

I know I'm on the edge coz the other day I wanted to wring Venus's neck.  Riba rage is definitely affecting my relationship with the flock.

My writer friend really didn't get it.  I didn't think she would but I WAS hoping... Good writers are so empathetic.

I have 23 weeks to go (of 72) after tomorrow.  I have days, weeks even months where it's overwhelming but as long as I vent and whine a little and I'm able to express some of this stuff on forum and a lot of kind, bright people help pull you out of a funk with a funny comment, a commisseration, a joke . . . anything to distract yourself from the total TEDIUM of this experience... . it's like midair refueling.

I understand your guilt about your son having to help but I would imagine he's happy to be there for you.  

In a way, it may have been a good thing that I knew nothing about hep-c when I started treating last Xmas Eve.  I'd only been diagnosed in November.  So I had very little awareness of what I was in for.  Ironically, the major changes, the stopping a career of 20 years, the moving, the cottage renovations, have kept me very busy and distracted.

I'm almost done.  I'm gonna keep going as long as I'm allowed to moan a bit about it on occassion.  (G)

wyntre

[shastri20032003]

At work,my colleagues suffered my wrath.At hope my kids were the target.I preempted this side effect of mine before I started this treatment thanks to this forum and I cautioned all the people close to me to watch ourt for me!
Everytime I went into a rage I ensured I apologised, and gave the kids a special hug
Well,I guess thats the most we can do!

[ladywhy]

"Though it is not family.....there is someone who is getting the brunt of my intolerant 'unglued' attitude..hopefully I'll be given the opportunity to make it up...."

Primarilly, the reason I became "unglued" was because I knew something wasn't right,  that he wasn't being honest and he was keeping things from me. I kept asking him, "What is going on...and he would say...oh Yvonne, it's the medicine......you're not thinking clearly etc. etc...
Well, I guess I won't be making it up to him. He was unsupportive and showed no compassion for what I have been going thru. Couldn't even talk to him about it. Anyway. I have known him for years. He loved me, he never loved a woman before...he would die for me..yadyadayada. His company moved me 'lock, stock and barrel down here to PA. Just the day before yesterday, he told me he loved me...We have had problems...I work for his/him company..BIG mistake. He sent me an e-mail that I couldn't open up at home. At work, i went into his e-mail...and found a letter telling (a new customer) he loved her and hoped to spend many more Thanksgivings together . I guess he was gonna meet up with her and have a late dinner??? ...Sweetheart...yadayadayada. I left work immediately. We talked shortly thereafter..and he told me he loved me and he loved her...though it is her he wants to marry. We have had a very complex realtionship....my family and his say we are like an ole married couple. I have had no desire to marry because of some difficulties we have had...but I had hoped he would stand by me now....and maybe it would bring us closer. I saw that wasn't happening...but I am totally alone here and I tolerated his lack of care. In some ways, I feel relieved...that I can focus more on myself and getting better...he has a way of bringing chaos and stress to any/every occasion...but I am still hurt. Each time I think it can't get any worse...it does just that. I believe that God doesn't give more than He knows we can handle...but...
Bottom line...all the energy I expended on him and his family will now be redirected and hopefully put to better use and the only good thing is I will not let him take advantage of me anymore. I just don't know how I can continue to work in his home. (He lives with his father and brother...both never married and never lived on their own) It's a bit of a strange situation. He's 50 y.o and his bro. is 48. I have been such a fool. I did believe God had brought us together and that with God and His Love all things are posiible and we might be able to work things out..I just wanted to get through this year............ and see what happens. Obviously, Thankgiving was pretty quiet. I couldn't go home to be with family. The holidays are gonna be hard.

[Myown]

OMG, I'm so sorry to hear this! I don't understand how he did this while you are txing! Yvonne, I am so sorry. I just don't know what to say. I know I couldn't work there anymore, but at this point do whats BEST FOR YOU.  The stress of seeing him and knowing he did this would be hard - with Riba in my system. You have a great attitude though Yvonne. Finding something postiive out of it all and saying that now you can focus on yourself. Thats a great attitude that will help get you through. You'll be fine. It hurts now, but you'll be fine.

Love you,
MO

[merryBe]

do you think Riba rage is tranmittable?? giggle, but not really....the caregivers can get it bad too when we go off.

whntres9
and lady why...

estro related not!!!
I used to fantasize about wearing a t-shirt sayin "I'm out of estrogen and I've got a gun" (though not a t-shirt type.)

now if I had one...it would read, "I'm on Riba and I've got an ouzzi"

this drug strips one of huge amounts of seratonin. You know something is differnet when even when you are sitting at peace without a bad thought in sight and yet you can suddenly find youe whole face wet.

fortunately these moment pass as I try to occupy my mind and remind myself of who The Lord is and the strength I can draw on not of my own making,
but if things get bad enough I do beleive that people should fell no shame, including men, for needing a drug to compensate for what another drug is destroying and/or messing big time with.

If we don't admit, we not only make ourselves suffer, but can really wear our caregivers down as well.

One class I teach is in Greek word origins:

the word patience actually comes from a word meaning to sit and wait upon a King before moving.
Just as a one point idea, ministers waited around the throne of a king for his order to go do this or that, so we are told by this words original meaning to sit and wait upon The King before moving or saying things....we are told not to go manage the problem on our own, but to wait upon the Lord's instuctions as far as what to say or do.

So when St. Paul says to begin with, "Love is patient" (1 Corinthians 13), he is saying Love, waits upon Love, His Love, before arising and acting. It is what being IN Christ should produce.

this means many of us have not fully understood, and/or fall short regularly, of "waiting upon the Lord" in order to renew our strength and or spirit, and in order to govern our behaviors.

these are lessons hard won, requiring continal practice, but where all flesh often will fall short.
Nevertheless, knowing what the word patience really means have saved me many a foot in my mouth
so it is offered here as an encouragement.
let's all keep looking up.

[ladywhy]

MyOwn: Thank you for your kindness, concern & prayer....truly
MerryBe; I appreciate the Greek Translation....Patience....I sure need to sit at His feet.
Elaine: Thanks for the hug and care...

Since I don't know what to do about work...I'm not goin' in tomorrow. He is not willing to make any concessions...I asked him if he would allow me to work from home....NO...NO...NO. The last he said was he would 'consider' having me in his employ when I am repentant and my behavior changes....MY behavior! I said something this am...and he went off in a shouting, scrreaming tangeant. Ya'd think he was the on  the 1400 mg of riba...I lost it for a moment myself...I have to admit, but nothing compared to his outburst. It's nothing new but I cannot tolerate it...it makes me beyond weary and angry and sad.

[wyntre9]

ladywhy,

This is terrible.  I hope you don't think I'm out of place but I have to say it doesn't really sound like a safe situation.  Can you go anywhere else?

wyntre

[ladywhy]

I don't feel physically threatened if that's what you mean. Financially, yes..I do. Bills...yuk...medical Insurance could become a problem...stuff like that...but not physically. ....and I didn't think you were outta line asking either. Though I wish it were different..I cannot leave and go anywhere at this point. As SOON as I can...believe me...I'm gone...this place holds too many troubling memories!

That's what I daydream about....leaving, going anywhere I want...freedom!

"Freedom's just another word, for nothing left to lose"....Janice jus popped in my head.

In truth, freedom means much more to me....

Thanks for your concern
y

[wyntre9]

You're in a very difficult situation made even harder by TX.  I really feel for you.

How many more weeks of treatment for you?  I remember there was an issue about possibly extending, am I correct?

Otherwise, it says on your profile that you're at week 35.  If you're going 48 that's another 3 months.   If you have to stay in an uncomfortable situation try to keep to yourself, fly below the radar, have lots of scheduling conflicts . . . . anything to stay away from the person.

I had to go through that once, during divorce, but at least I wasn't also on TX.

All best to you,

wyntre