57 replies to this topic

[carrie]

klf2013,

I really enjoyed reading your post. I think you have some great ideas and it is refreshing to know that I am not alone in these feelings.

Thanks for sharing.

[klf2013]

klf2013,

I really enjoyed reading your post. I think you have some great ideas and it is refreshing to know that I am not alone in these feelings.

Thanks for sharing.

You are a teacher, and I am a school nurse. We are used to caring for everybody else...that is why we do what we do. It is hard for us to let anyone know that even though we look like we have got it together...underneath it all....sometimes we don't.  Hang in there!

[jmoorhou]

My bladder is really messed up too, I have pain and a constant UTI on Gleevec...It just started after a year...really upset about it..

[gerry]

Have you tried Cranberry juice for the UTIs, I'd drink it at the other end of the day from the Gleevec, in case it impacted it.

[tazdad08]

Well.... after more serious discussions at home, I am being told that she thinks this is mid life crisis moreso than changes because of a chronic disease?????      . I dont know what to think. I am so confused that I confuse myself. lol.. 

[klf2013]

Well.... after more serious discussions at home, I am being told that she thinks this is mid life crisis moreso than changes because of a chronic disease?????      . I dont know what to think. I am so confused that I confuse myself. lol.. 

Hey TD,

Perhaps some marriage counseling is in order?   Mostly because a third party really helps each person to understand and listen to what the other is saying.  If you both want to find the happiness in each other again, I highly suggest it. Otherwise your serious discussions may just end up being complete misunderstandings.    A counselor once told my husband and I that a marriage is like a campfire. Sometimes the love is roaring hot, other times just the embers are burning. As long as there are embers, the fire can start again. If the embers are gone for one of you, it is difficult to get that same fire started again. Don't burn out the embers dude!

[tazdad08]

This thread kinda went dead. I wanna keep it going. I was first told by my wife that I need on meds... that I have to be depressed. Then I was told that I am going through mid life crisis at 43....????? maybe, probably not. I still feel like life is short and we all have been lucky enough to get a wake up call called CML. I still think I question my life at times. Not questioning why I am alive, but questioning where I belong, what have I missed, what should I do about all those unanswered questions? Any input from anyone is greatly appreciated. Posted here or private messages.

[CallMeLucky]

When I got diagnosed I remember joking that all that stupid crap I did in my twenties was apparently my midlife crisis and I just didn't know it, of course now I see I may live a bit longer.

We stress because we worry about the future and we regret or long for the past, you can only find peace in the present moment. Take a breath, look outside and notice something simple you never noticed before. You woke up this morning and you're alive, it was a good day. Leave the rest behind. Focus on the present, appreciate what you have, do what helps you be calm. Let your wife work out her own stuff, I would tell her not to worry about your midlife crisis or needing meds, tell her your fine and let it be. This is your burden don't bother trying to share it with anyone else. I know that sounds lonely but the reality is no one is going to make us feel any better we can only do that for ourselves some days and other days we feel lousy, that is life, ups and downs. Remember everything begins and ends. When you're having a crappy day it will eventually get better and when your doing good that will end too and the cycle will continue. Go back to my first point about not worrying about future or regretting or longing for past. Just live your life in the present, deal with your burden because that was the hand you were dealt, don't rely on anyone else to make you feel better and certainly don't let anyone else's issues bring you down. Just try to be for a while and see how that feels.

That's my cheap advide, it's what I try to do, some days it works better than others. Take what interests you and toss the rest away.

[scuba]

When I got diagnosed I remember joking that all that stupid crap I did in my twenties was apparently my midlife crisis and I just didn't know it, of course now I see I may live a bit longer.

We stress because we worry about the future and we regret or long for the past, you can only find peace in the present moment. Take a breath, look outside and notice something simple you never noticed before. You woke up this morning and you're alive, it was a good day. Leave the rest behind. Focus on the present, appreciate what you have, do what helps you be calm. Let your wife work out her own stuff, I would tell her not to worry about your midlife crisis or needing meds, tell her your fine and let it be. This is your burden don't bother trying to share it with anyone else. I know that sounds lonely but the reality is no one is going to make us feel any better we can only do that for ourselves some days and other days we feel lousy, that is life, ups and downs. Remember everything begins and ends. When you're having a crappy day it will eventually get better and when your doing good that will end too and the cycle will continue. Go back to my first point about not worrying about future or regretting or longing for past. Just live your life in the present, deal with your burden because that was the hand you were dealt, don't rely on anyone else to make you feel better and certainly don't let anyone else's issues bring you down. Just try to be for a while and see how that feels.

That's my cheap advide, it's what I try to do, some days it works better than others. Take what interests you and toss the rest away.

 

Excellent Gary - AND to add.

 

Nothing works to improve outlook than a great glass of wine at the end of day. Or a cigar with friends in the outdoors infrequently (smoking's bad after all). Or the smell of a Rose in someone else's garden (I gave up trying to grow them - can't be done by me). Or - most important - telling my wife that I love her every single day I wake up. A happy wife is a happy life. 

[DebDoodah22]

Tazdaz08
"Well.... after more serious discussions at home, I am being told that she thinks this is mid life crisis moreso than changes because of a chronic disease????? I dont know what to think. I am so confused that I confuse myself. lol.. "

None of our business really but you seem upset yet it's kinda hard to contribute positively to this dialogue without a little better idea
The mid-life crisis does exist you know...
but then it is also real and common for depression and mental confusion, to be present due to TKI meds treatment,
and also there are real psychological issues diagnosis especially for a young man like you.

You seem very upset, maybe it would be worth a short talk with a psychologist to just sort through things, so you can feel a little more grounded and less confused.....I am not sure but I bet a high percentage of CML patients go through some kinda angst...I have had my share. Thanks for putting yourself out there -that takes courage and some days, that is not so easy.

[kat73]

tazdad08: 

 

As you have seen from everyone's great posts, you have a lot of company in your feelings.  I think we have all wandered in the wilderness at some point and to some degree and thought we'd never have peace of mind or contentment again.  I can only offer my story in hope that it will help you in some small way - I know that in my 6 year search I never knew where the random word or perspective might provide that revelation that advanced me on the way out of my troubles.  Many, many, many times I found those words here on this forum, in other peoples' experiences.

 

I was put on Gleevec 400 at diagnosis in 2009 and I never had a good day again for the two years I was on it.  I was bewildered, because my hematologist kept saying, "Most people tolerate the drug very well."  I was predisposed to be a "good patient," and I tried very hard to keep a positive outlook, as in telling myself the overwhelming malaise would pass, the drug is going to work.  I asked if he had ever had a patient fail on Gleevec, and he said only the one who kept going off it because "she didn't like the way it made her feel."  She died.  Oooh, I thought.  Bad patient!  I doubled down in trying to cope and stay the course.  But now I felt even more alone, because I didn't like the way I felt either, but I didn't want to say so, to be the "bad" patient.  What was wrong with me?  My CML numbers were marching at a fast and satisfying clip downward; doc was super pleased.  But my life was a wreck.  I was besieged by malaise (just feeling "sick" overall), depression, anxiety and debilitating fatigue.  My swollen puffy eyelids, top and bottom, made me look sick, old, maybe like I drank too much too often.  I was unrecognizable, and I could see in other peoples' eyes how I looked.  I continually descended, but at every office visit I was met with "You're doing great!  Lookin' good!" and prescriptions for some more drugs to take for the symptoms that the doctor didn't believe had anything to do with Gleevec and claimed he didn't see anyway.  There were days I didn't get out of bed, days I did but didn't get dressed, days my husband would come home and find me in a ball, crying, and he'd rock me in his arms while I cried over and over again, "I can't take this anymore - this isn't living - I can't do it anymore."

 

Well, I'll cut to the chase.  The day I actually cried in the doctor's office, he suggested counseling.  It was a good move.  I spent two years, off and on, going once a week.  The therapist was a LCSW - Licensed Clinical Social Worker - and didn't cost an arm and a leg.  My insurance paid most of it.  She took a Cognitive Behavior Modification approach.  I was skeptical - she was young (what could she know about me, with my grown kids?) and behavior mod struck me as "don't worry, be happy" stuff - fixing the surface and never getting at the core problem.  But I came slowly (very slowly - sometimes I think it's actually the passage of years itself that gives some of us some of the answers) to see that there are intractable problems that all humankind share - like death! - and that existential thinking (as you so well described it - why am I here and what is life supposed to be about and what is my role), although worth examining - for sure - can keep you from being happy in the here and now.  I came to see that our time is finite - everyone's is - and that I was wasting mine.  I needed to get cracking on living the way I wanted to. I guess this is a kind of acceptance.

 

What did I do?  How did I change things?  What would be my advice to you?  First, I changed doctors.  It was an amicable split.  I sought out a CML expert (listed in the top 20 or so that are always mentioned) at a major teaching hospital.  Are you being followed by someone who really gets it about the effects of TKI's?  The acknowledgment of your symptoms and feelings is golden - someone who makes you feel that they are not real or that you are weak is not the doctor for you.  Second, I switched to Sprycel, which made a distinct difference for me.  It reinforced that it had been Gleevec driving my crazy train and the problem was not in my head.  No knock on Gleevec intended here - I just mean that you might feel better if you switched to a different TKI than whatever one you're on.  Third, it sounds like you - and your wife - could definitely use some counseling.  This is not an admission that there's a big fat problem, or someone is wrong and needs to change, or that anyone is crazy or a weakling and can't handle stuff.  No.  View it as a guided exploration, a sorting out of the confusion and conflicting feelings, a new way of looking at things, some questions to ask yourselves, a quest.  Your wife is probably onto something about the midlife crisis - it's just that that phrase doesn't really cover it right.  I think your questioning shows that you are intelligent and sensitive - everyone like that at some point comes up against the big questions.  It takes time and thinking to get anywhere.  The therapist will not give you the answers.  The therapist will not make you change.  A good therapist will listenlistenlisten and ask you things that leave you surprisingly speechless and you end up going home and thinking about them at random times during the week.  This is the place for you to take your stuff that you can't say to your wife or that you feel she's not understanding.

 

What I got from switching doctors and from this discussion forum was understanding and validation - this is what you need now and are having trouble getting at home.  But, as much as we rely on our beloved families and friends, they can't help but bring their own judgments, their own ideas of what you should do.  They want to fix it.  They have opinions.  And for each one of these people - who you need so much for their love and sympathy - you unconsciously change your words, censor yourself, stifle the feelings or tailor them a bit - so as not to disappoint them or to not invite criticism.  You can't help it!  But the therapist is completely neutral.  You don't know the therapist; you are not friends.  The therapist doesn't judge you for anything you say, so you can say anything.  You don't have to please or impress the therapist, or make the therapist laugh.  It's an enormous relief, believe me!  My personal struggle was over the loss of my former energetic life of being the doer, the guilt over being a disappointment to my husband and family, the shame of not coming up the the mark in any area I cared about.  All the stuff I couldn't or didn't want to do anymore!  Holy Cow.  And last, but most assuredly not least, the dissonance with the healthy world out there that seemed on the other side of the glass - trying to keep up, act normally, participate - and constantly coming up against people who either didn't know about my diagnosis (sometimes by my choice) or just didn't understand the unique CML predicament.  You don't go bald, you're gonna be "OK" - but of course, no one really knows that yet - all you have to do is take one eensy pill every day forever.  Piece of cake.  It's hard and your wife is not getting it, and you are justifiably confused and unhappy about where you find yourself now in your life. 

 

So, decide if you need a better oncologist, a different TKI, find a good therapist for both you and your wife, continue to come to your CML friends here on this board, and I have one last piece of advice:  be assertive in learning all you can about CML.  The first turning point for me was when I found this forum and . . . Trey.  At long last I found real, true scientific explanations for what was happening and answers to all the questions I could never get the oncologist to hold still long enough to explain to me.  And Trey cheered me up immeasurably, gave me tons of hope - not false hope - rational foundation for hope.  And all this without once posting until six years later!  Well, I'm out now.  And obviously don't know when to shut up . . . OK I will now.  Your words touched us all.  Please keep talking.  To your wife.  Your therapist.  And to us. 

[gerry]

Hi kat73,

Well said, please keep posting.

[tazdad08]

Thanks Kat73!!! Thanks a lot!

[kat73]

Thanks to YOU, Gerry and tazdad08.  It's hard, online, to not put your foot wrong, so thanks for the replies.

[tazdad08]

WOW Kat73.... I go back and reread your post over and over and over.... and every time I get tears in my eyes and a lump in my throat. Thank you so much!!!! You really get it. You put so much great advice into words. I am heavily involved locally with cml support. I would hope that one day you consider doing the same. Just yesterday after noon I got the call that I went from undetectable to a BCR/ABL of .07.. I know that its just a bump in the road, but dang! did it hit harder than I ever expected. I done it to myself. I had been taking 20% of my dose for over a year. I don't regret it, it was a better balance in quality of life.

[sunshineC]

Hey Kat73.  You said a lot!  and by a lot, I mean so much that so many of us have experienced or are experiencing.  It means so much to me when I find the understanding here that can be so difficult to find 'out there' in the normal world.  Just knowing that you're not alone takes so much of the anguish of everything about this disease so much easier to deal with, for me anyway.  Keep posting!!  For all of us!! 

[kat73]

Wow, thanks tazdad and sunshine!  You've made MY day.  Truly.  Feels great to think I gave a little back.

 

Tazdad - You do realize, don't you, that .07 is fantastic?  You could stay there forever and be fine.  (Yeah, I know, theoretically.  We will ALL see eventually.)  You didn't "do it to yourself" - mathematically speaking, the uptick was insignificant anyway - you were just experimenting.  Scuba is experimenting.  There seem to be darned few of us who meekly do as told 100% of the time, because we're all actively searching for answers to the CML puzzle.  However, it would be the prudent conclusion from your experiment, on your part, to tighten up your regimen - be guided by the dosage and schedule your doctor has set - because you sure will be happy when you get that PCRU back again.  However, having said that, most everyone here and most of our doctors think it is preferable to find a balance between dose and quality of life, rather than chase the rainbow of PCRU at the expense of miserable rashes, joint and muscle pains, GI issues, and the other devils.  If you trust your oncologist, and you've been truthful with him - both about what you've been doing or not doing with your TKI dose AND the quality of life issues - then let him set the course. 

[tazdad08]

Thanks 

DebDoodah22, I was refreshing me short memory lol. I enjoy reading the comments and input from everyone. I was going to therapy on a regular basis. My therapist said numerous times that I was a model patient. She actually released me because of my positive attitude and my ability to handle things. Of course, it was with the understanding that I could call her at anytime and revisit her. I have became a facilitator for The National CML Society for the Knoxville TN area. I truly feel like the majority of the issue is my wifes inability to accept and adjust to not being able to call all the shots at home. It was ignorance for living that way for the past 17 years. I am not saying that she doesnt love me or anything negative towards her. But I feel like its always been me bending over backwards and sacrificing to make her happy. She is struggling (or refuses) to see it from my point of view.