39 replies to this topic

[Lisal]

So many times I hear people say what a blessing cancer was because it made them enjoy life, worry less, be happier, etc, etc, etc blah blah blah.

Well I don't feel that way.  I worry more, enjoy less and am so friggin tired all the time.  Then I feel something is wrong with me because I am not on the 'cancer is a blessing' bandwagon and am not being a good role model.

Does anyone else feel that way?  Is apathy one of the stages of grief?  How about guilt or worry?  It's been 3 years since I was diagnosed.  Can I just get on with my life?  Sorry, I guess I am just feeling sorry for myself today-lack of sleep.

[scuba]

After 3 years, where are you on the treatment plan?  PCRU? - close to it?  Blood counts normal?

[rct]

You said it yourself, "...cancer WAS".  For you and everyone else here, cancer IS, it doesn't go away, wasn't cut out.  It's pretty different.

rct

[Lisal]

Yes blood counts are normal and I am at PCRU.

You are right rct.  For other types of cancer, they have surgery, have chemo, radiation and hopefully are cured.  It is different with CML

[donnadavis]

I have heard that cancer is a blessing at my church several times. I don't ride on that wagon. I have had CML for two years and because of it I lost my job, health insurance, bank account, my house, my peace of mind and my dignity. Don't ever tell me that cancer is a blessing. Cancer is an evil monster that I pray one day we will annihilate. Cancer is no blessing any more than a heart attack, a stroke, Alzheimer's any other devastating disease is a blessing. Let's call a spade a spade. Now I will  quit ranting! Bless you!

[Lisal]

Donna, good to know I am not on the 'cancer sucks' bandwagon all alone

[simone4]

Dear Frustrated, once when I told my onc that I no longer enjoyed listening

to Nina Simone, Miles Davis or any of the music that had kept me sane

for most of my life, he seemed puzzled. My enjoyment of life has simply

gone out the window. Sometimes not so much, but other times, profoundly so.

I have seen others with cancer, but "when you can cut, you can cure".

We wake up with this companion every morning of our lives and how

we deal with it astounds me. I have seen so much courage on these

Boards, that  it has changed the way I look at human nature.

Feel sorry for yourself today. Eat some ice-cream, lie in bed and

watch the shadows go across the wall. Some days are like that.

Don't compare yourself to others. Everyone of us here has his/her

own journey. And that "smell the roses" crap... don't get me started.

Take care.

Simone

[MomMom]

Frustrated.  I 'm with you on this one.  Cancer is not a blessing. It is a curse that for us just won't go away.  I also have days where the will to go on with everyday life just goes out the window.  Fortunately, it is not everyday.  It's sad when your husband's last words of the day are "did you take your Gleevec?"

He is a cancer survivor. His was cut out and gone.  Mine just hangs around and causes trouble.  I still work fulltime and plan to retire in June '11.  Can't wait. I do have a lot of living I want to do and I have not waited until then to start.  Part of my drudges are self inflicted because I am so tired that I can't finish what I want to do.

Keep the faith and know you are not alone.

Kay

[janne]

frustrated67 and all the others who so candidly posted here on this topic,  I don't think you need to hop on the bandwagon, personally that wagon can speed on out of town, and I will walk.  I get tired of being tired constantly.....and worry less ?   Every day I wonder if I will lose my job because I work at a small hospital (not where I get treatment) that is managed so deficiently, I can't imagine it lasting another week, but then it does.  I know I couldn't afford COBRA if I lost my job and in the meantime, I deal with various incompetent managers who are so miserable that all they can do is add another serving of misery to everyone else's plate.  I do find consolation in small things, don't get me wrong, but it is truly a different picture. Then recently, I had an interaction over the phone with my primary care provider whose lecture on a day when I particularly did not want to ride that bandwagon made me want to not set foot in that place ever again, and I probably won't.  Thankfully, I have had a great onc/hematologist, but I don't have much patience for the absurdities of any white-coated individuals who, in the name of indifference and cluelessness, dare to open their mouths about anything I might be feeling other than utter joy at having a diagnosis that allows me to take a wonderful little pill every day !    I happened to tell this self-involved practitioner that I basically live day to day, not knowing how I might feel tomorrow and I got yelled at !  That said, I don't think you are a bad example....who is ANYONE to say what you are to be and supposed to feel ?  I have been on the other side of the fence as a nurse, not in oncology, but in internal medicine (I no longer work as a nurse because I am too friggin' tired) and I constantly endeavored to empathize with those whose illnesses I had not experienced in order to not alienate and annoy unnecessarily and I am grateful for those few who are able to refrain from saying stupid things along the way at this point in my life....thank you for your candid remarks.   Yes, lack of sleep can do that to a person.  Today, I feel less alone.

[HeatherZ]

I love you all!  I am so glad I am not the only one that feels frustrated sometimes.  Janne - your statement "....anything I might be feeling other than utter joy at having a diagnosis that allows me to take a wonderful little pill every day" sums it all up.  So many people around me (family mostly) seem to think this is a walk in the park since I can take a pill everyday.  They don't seem to understand that I am always so friggin tired I could cry, or that my brain fog is so bad some days I can't even remember my name, or that the rash on my stomach itches incessantly and the pill keeping me alive is also what gave me the rash.  My mom had breast cancer.  It was caught early and was able to escape with surgery only.  There are so many days I would love to just tell them all that I would gladly let the doctors cut anything they wanted off of me and lose all my hair if it meant I would be free of this parasite!  Anyway - glad to be able to safetly vent.  Power to the CANCER SUCKS bandwagon!

Heather

[ROM1212]

Simone 4 writes "My enjoyment of life has simply gone out the window. Sometimes not so much, but others profoundly so".

This is so sad but so true.  There are times where I feel I am doing a complete disservice to my family by having this disease.  The stress of work and a dysfunctional workplace physically wears me down, then when I get home I cannot muster the energy to be the leader of my family, the financial planner, the organizer, etc.  I simply am unable to deal with so many things because my body and mind are so fatigued.

Having CML is a very lonely disease.  I say CML is not so much "managed" as it is endured.

[CallMeLucky]

I think for a lot of people this attitude becomes a defense mechanism to cope with something that rocks us to our very core.  I don't think you should feel obligated to be any particular way for anyone, regardless of your health disposition.  Cancer is horrible, plain and simple.  It varies in each individual what it takes away for them, but ultimately it takes something.  With cancer there is no cure.  Yes they may cut it out and/or drive it into remission with drug therapy, but it is always lingering there, waiting to pop back up.  It may be a year, it may be five, ten, twenty years, or maybe never and you ultimately pass from something else before hand.  The mortality rate on earth is 100%.

I learned very quickly that CML is something a little different than other cancers.  The treatment approach is very different.  I am conflicted with my feelings about that.  In one sense people say I have the "good cancer".  I don't like the sound of that, but the point is not lost on me.  I really see CML for the "chronic" disease that it is.  It will be with me for the rest of my life.  My life is going to be impacted by it.  I'm never going to feel 100% ever again.  But, there is a good chance I am going to be alive for a long time, that my existence won't be horrible suffering, and there will be the opportunities to: feel love, friendship, satisfaction from accomplishing something, read a good story, watch a mindless TV show, watch my children grow up, and fall asleep next to my wife each night.

Cancer has not been a blessing, but my life is a blessing, despite this terrible thing that has happened to me.  So for me I don't thank cancer for helping me to appreciate my life, I appreciate my life in spite of the cancer.

I wish you all peace and happiness

[scuba]

I believe we will see CML eradicated in a relatively short time (years not decades).  We won't have to live with taking a powerful drug every day like we do now.

Unlocking the genetic code and getting down to the molecular basis of CML shows great promise.

But I also believe that whatever biology we each have that enabled CML to get started - will always be with us and even with eradication (i.e. ZERO abr/bcl cells) - there will be some cell division in the future where the 9 and 22 chromosome translocate and start this process all over again.  But this time, we all will catch it very very early (as soon as PCR-detectable occurs) and the new "cure" treatments will eradicate it again.

The good news is that we already know that for some - remmission without any TKI can last years before it comes back - and that's just with TKI therapy.  Imagine when they get to the root and eradicate it to the last cell.  Who knows how long remission would be - perhaps lifelong.

As long as there is funding for the research and the computer power to decode the genetics, we have hope.  In the mean time, we are alive and that's worth celebrating.

[CallMeLucky]

"As long as there is funding for the research"

That raises an interesting ethical dilema I have been asking myself.  Is it still charity if I donate to cancer research now that I have cancer?  My wife says yes because it helps other people too, but it still feels a bit self serving. 

Of course I am being somewhat facetious!

[Lisal]

Well said garychris!

I'm glad to see I am not alone in my feelings.

It's crazy isn't it!  Judging myself for not being a good role model.

I have had a hard couple of days. I think lack of sleep and fatigue make things harder to deal with.

Thanks for the support!

[Susan61]

Hi:  NO I never looked at my cancer as a blessing, but when I got to PCRU I felt blessed to be at that point.  I  always tell myself that I am Glad to Be Where I Am and Not Where I used to be.  I have been PCRU for 7 years, and I went through all the anxiety and fear in the beginning not knowing what to expect.

I admit I do not enjoy a lot of the things I used to, and part of it is that I am getting older.  I cannot do things I used to, and some things I do not even want to do anymore.  I do what I feel like it when I feel like it.  That was something that cancer taught me.  I do not have to make everyone happy and do everything they feel like doing.

     I was always a people pleaser, and now after all I went through I can please who I want when I want.  If I am tired or achy, then I relax.  If I feel energetic then I go out and do something.  I was diagnosed in 1998, so I have been dealing with all of this for awhile.

    Just try not to dwell on how your feeling.  I think the more you think about it the worse you feel.  Take Care

[SunNsand]

frustrated67 -

   You are not a bad example, you are a perfectly normal example of a cancer patient. Cancer is not a blessing either, if cancer is a blessing, I would rather not be blessed thank you. There is a popular mind set these days to "think positive and good things will come your way". I cringe whenever I hear that said because it makes cancer patients feel it is their fault if they are not doing well. They did not think "positive" ick. That is giving a cancer patient another reason to have a lousy day, shame on whoever says that. Life experiences help develop how well a person handles new situations that come along in life. I learned that from a psychiatrist I saw a few yrs. ago while trying to deal with so much cancer in my family, genetic testing we were all going through and I hadn't even been diagnosed yet. Oddly enough when I was diagnosed, that was easier for me to handle than watching family with cancer. Everyone handles it differently, and however you feel is ok.

SunNsand

[Pika]

You're not.

[Goldfinger]

My mom passed away from leukemia back in 1993. No one remembers exactly what type it was although one of my brothers seems to think it was one of the "acute" leukemia's. She had lost a lot of weight and was feeling fatigued so she went to the hospital where she was diagnosed. They  told us she had weeks to live and put her on pain medication. I was out of state at the time but made reservations to fly home two days later. By the time I got home, she already had passed away. The leukemia was much more aggressive then first thought.

Anyway- fast forward to Dec of 2009 when I was having problems breathing and seemed to have lost my appetite. Went to the doctor where I too, was diagnosed with leukemia. Imagine my shock and disbelief since I had already lost my mom and thought surely I was going to be next. Fortunately- it was cml which can be controlled and is not one of the other more aggressive, uncontrollable  ones. It took a long time to come to terms with what happened but  in spite of all my aches,pains, nausea,etc - I am glad to be alive. I'm trying not be be a victim of this disease by not feeling sorry for myself and am living my life with a renewed sense of optimism. Sometimes I don't always succeed but I always try.

I hope I didn't offend anyone who thinks otherwise. I just wanted to give my perspective. Things could be much, much worse....

Steve

[raegles]

Not only are you not a bad example, but since you have cancer you have a right to react any way you please.  I am fairly new to this forum having been told about it by a fellow CML combatant.  When I was diagnosed in Feb 09, I remember I was fond of saying that if you have to have cancer, CML is the one to have, maybe because my mother had three different cancers and died of colon cancer.  I am now on Sprycel after uncontrollable side effects on Gleevec.  I have enjoyed reading everyone's posts on this topic.  The comment that struck me was that someone said their life would never be the same again.  Over time, I too have come to realize this.  My cancer is in check, but the side effects of the medicine have changed who I am.  I'm exhasted, anxious, depressed and have pains all over.  I don't enjoy being around people and have become anti-social.  Having said that it still beats what my mother went through.  I am very glad that there are times that I still laugh, enjoy my family and love life.  I guess I resent the hell out of what cancer has done to me and how it has changed me, but I do try and enjoy the smaller things that I always took for granted.  I'm sure I'm a poor example of what a cancer patient should be but, like you said, sometimes you just get worn down.  Tomorrow is another day for all of us and as long as we're here to enjoy it, or at least try to, cancer hasn't beat us yet.  Good luck to you and everyone else dealing with this...