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After 3 years, where are you on the treatment plan? PCRU? - close to it? Blood counts normal?
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
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!
Donna, good to know I am not on the 'cancer sucks' bandwagon all alone
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
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
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
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
I can’t see the blessing in CML and I am 6 1/2 year survivor, although I am pretty sure I had CML at least a few years before diagnose. Doctor didn’t bother to follow up on a CBC that kicked out some High’s and Low’s, I guess then weren’t out of the guidelines, So 3 years later doc say oh it time for another CBC yep 2 million platelets and granulates slightly out of whack.
Anyhow I have a friend who post the most wonderful caringbridge.org and how she is truly blessed even thru all the suffering of months of chemo, masectomy, skin craft, infections, more surgeries and now 30 radiations.
Then I wonder what is wrong with me that I don’t feel blessed. Hum I don’t have enough energy to have nice parties a few guest over from time to time and hope I am feeling up to it. Sign up for some course and if I don’t make classes I lose my money. Preacher is wondering why I have not been in church for 5 weeks, got a cold off and on (mainly in the winter months) so sleeping to much to recover. Not getting along with Oncologist. Got to think about CML over my head and keep up with all the new med’s out there, and insurance is so........ unhappy about the cost. Would like to clean my house, but it gets done very slowly, as everything. Chronic back pain. Log on this site to keep up, not that I don’t love you all and nice to be part of the group, but hey to think about cancer everyday, doesn’t make me feel lucky or blessed!
Then why do I feel guilty because I am one of the lucky ones now with CML and the TKI’s, because they are better then 12 years ago. Why do I keep saying where is the d... cure to these disease, and where does the billion dollar research money go to. We can fly a man to the moon and can’t find the promised cure, but people keep encouraging yep cure will be here soon. Well my friend of 6 years calls MDAnderson every year and says where is my promised cure from 16 years ago for CLL and then just had breast cancer was that a coincidence or the med’s? Long term side effects of chemo.
Preacher down the street 53 years old. Let a good life. Cancer of the throat and neck and he is trying to find the “I will be a better preacher” sermon!
pamSouth
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.
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.
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
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
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.
"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!
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!
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
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
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...
Hi,
I am so glad you posted this; sometimes I feel like I am the only one who is not "happy" to be on gleevec and be suffering from this disease. You are so right; people just do not undersand--many of them try--but they do not have a clue what it is like to live with cancer even if "you only take a pill everyday." My brother keeps telling me, "I know you are going to beat this." It really irritates me because cml is not like other cancers. My mother had breast cancer and after surgery and chemo, she did beat it but gleevec is keeping us alive--thank God--but it still SUCKS!!!! We still have leukemia; at the current time, we cannot BEAT it. Every once in a while, I just say to myself, "Sandi, you have cancer; you have cancer." People say to me, "Oh, you take a pill." like well that is not so bad and believe me I am so thankful for gleevec but that does not mean that it does not make me sick, nauseas, a lot of pain and just pain sucks in general. My pcr numbers keep going up and down and up and then down and I am currently seeing two oncologists. I was diagnossed 2 years ago, and although I am not thinking about it as much as I use to, IT IS ALWAYS THERE--not just for me but for my husband. I lost a great job because of cml and I feel like I lost my spark for life. Thank you all for being there--this site has helped me so much, sandi
Anyone who says, "It's a good thing they have a pill for that." or "Oh, you take a pill," is being very insensitive. Forgive me, but it is a very stupid thing to say to someone with cancer or any chronic illness.
Hi Tedsey: I responded way back in the beginning of this post as to how I feel about cancer and how to deal with it. What you said is so true. People think that because your on a pill that your okay now, as if you took 2 Advil to get rid of the headache. So many people do not understand, and especially when they see me still walking around after having CML for so many years. I have had friends and family wonder why I did not go back to work, and why I do not do a lot of the things I used to do. I have been able to deal with side effects better as time went on, but some of them are always there like the fatigue and joint pain.
I also have developed other problems since I got older which has slowed me down. We do live with it everyday no matter what anyone says, and we all handle it the best way for us. Nobody should decide how someone should feel, and not just with cancer. You never know what is going on with someone physically or mentally. Just be a good friend and support and pray for them.
Susan61,Bill here.I am new to posting here,and you had mailed me a couple of times when we were discussing Gleevec cost. Wow your post hits home for me.I could have wrote the very words you have.I to am not the person I was before CML and I to have friends/family that react the same way to me as you were saying in your post.I have an elderly Mother,she has always been somewhat of the demanding type.When I first got CML she was you know,Oh My I Hope you get better and dont up and die on me.Who will take care of me? It's like GEES Mom I am in the fight of my life,and your worried about me taking care of you???? I had a neighbor of almost 20 yrs, tell me one day when I was having a really bad time with side effects of Gleevec .I quote: Gee Bill you look like crap,Whats wrong with you any way????????? Are you sick or something ? So I have just tried to except it and go on. What else can we do. Thanks Bill
Thank you for starting this discussion. Saying that having cancer is a blessing, is in my opinion a bunch of baloney. Are there still blessings in life post diagnosis? Sure. But the disease itself is no blessing.
I'm thrilled to still be standing -- and I thank God for gleevec which enables me to do so 7 years since diagnosis. I have people near and dear to me who say 'you're so lucky to only take a pill'. My own doctor told me back when that it would be like taking a vitamin each day. Really? Some vitamin.
I dream of the day when there's a cure -- and the day when I can be off gleevec. I, too, am tired of being tired -- and tired of the other side effects -- including the financial burden which only compounds the stress of living with this day after day. I've been told to just not think about it. Puhleeze.
It feels good to vent.
Kathy
Hey Kathy - when I met with the local oncologist, he said "who's luckier than you? You have the cancer I can treat with a pill. You'll be fine".
I get what he was saying and I can appreciate and be thankful for having the options I have. My wife made the observation when we were sitting in the waiting room, that there probably wasn't a patient in the room who wouldn't switch places with me. She was probably right. Still he was a bit flippant about it.
Hi Gary,
"Who's luckier than you" -- ha ha ha -- OMG, that's a good one. I'll be chuckling over that one all day.
Kathy
Another funny line my first onc told me was that my BMB wouldn't hurt. I only wish I could have had my hands around her neck so I could show her much it didn't hurt....
Raegles -- oh, that's a good one too. Doesn't hurt indeed. ha ha ha Some of these docs must go to comedy class together -- they're a funny bunch.
best wishes,
Kathy
Gary, again, all the insensitive things people say... I am not sure I would trade places with another cancer patient or they would trade places with me unless we were cured. "who's luckier than you?" Give me a break! I can answer that one: Anyone who does not have a chronic illness, cancer, or any health condition that may shorten or interfere with their life.
And people forget that there are CMLers out there, although few, who cannot be helped by the drugs of today. They are going through or surviving the effects of a stem cell transplant. Some don't make it. No one should forget them, but obviously we don't since we all know that this disease could progress. Oncs should never make such bold statements. And we should never be so comfortable to think we will never be in their shoes. Not so lucky.
My grandmother is 94. She is always complaining. I am not allowed to tell her about my leukemia diagnosis. They family has threatened to cut me off from seeing her if I tell. I used to see her almost every week. She adores my children. I cannot bear to go see her now. First, I have trouble with her complaining about growing old and wanting to die already. Second, I hate having to keep a secret from someone I was so close to.
I hate having cancer! I'll never want to get used to it unless I am promised to live to 94 and see my kids grow up. Sorry, I am having trouble leaving the house these days...for many reasons.
Well people at the ripe old age of 42 I have both CML and Breast Cancer and they both SUCK !!!
CMLinATL,
The lady who told me about this forum has breast cancer and CML as well. I am so sorry to hear about your situation. My mother had breast cancer, uterus cancer and colon cancer. I know it's not great dealing with CML, but I can't even imagine having to deal with what you're going through. There is nothing that I can say that could possibly help, but I certainly wish the best for you and hope you are doing well.
-Steve
It's bad enough to have one type of cancer, but to have two or more! I cannot even imagine. I have had a hard enough time accepting one cancer diagnosis. Just because we have CML doesn't mean we won't get breast cancer or have heart problems or diabetes or other diseases. It just seems overwhelming at times.
Frustrated,
Ha, ha, ha! I am with you!
Two years out, complete remission (MCL) and I am still adjusting to my life as it now is. I have adjusted and accepted to the fact I had cancer, I have adjusted and accepted it will more than likely come back one year, hopefully, not for many years! I have adjusted and accepted that my longevity of life may not be as long as I thought. I am dealing with new challenges that I never experienced before - from outgoing to more introspective and quiet. Where I never had to pace myself, today I must consider how to schedule my day so that I can stay up past 9 p.m. for anything social!
The saying I cringe at is, "Cancer does not define me." LOL (wet my pants laughter)!! If cancer has not defined me then why am I tired, why has my perspective changed, why has my personality changed, why have I had to learn to live one day at at time trying not to worry about tomorrow and why do I still take ativan? Cancer has put a new definition into who I am today. (Its not all bad, I think . . . ?)
Cyndi
I was diagnosed in April of 2002 and I agree cancer is not a blessing but I'm very optimistic and very laid back, I don't let things bother me! I think my point of view is a little different then most because I really only have one side effect from the Gleevec and that is being tired but that doesn't stop me from doing whatever I want to do! My life has not changed for the worse since being diagnosed, in fact it has gotten better! The way I see it, taking a pill every day is a small price to pay to still be alive (of course I would rather not have to take a pill everyday, but it is what it is)! The only thing that I can't explain is how much they charge people for Gleevec, I can't believe how much it cost to live!
Frustrated67,
You are absolutely right to feel what you are feeling. Cancer is a horrible and insideous disease (or symptom, depending on who you talk to). I have recently been going through some similar thoughts. My stage 4 NHL has come back after 83 months. For the last 6 1/2 years I've been going for rituxan therapy every 6 months to keep it from re-occuring and here it is anyway. Six and a half years of 3 months of chemo brain, 3 months of better. And the f***ing s**t is back anyway. It pissed me off so much I put together a web site to help others with the whole process. The site is: www.beatcancer4ever.com
In the site I've put together some resources, links, articles, a blog, and even made up some anti-cancer t-shirts. I figure anything that might help is worth the effort. I realize that everyones metabolism is different, as well as the differences between cancers, however,if anything that I've run across makes a difference, even the slightest bit, that bit may be just what someone needs to beat cancer, and not just survive it. That will make it worth it.
CCKMA - cancer can kiss my ass!
Andy
Wow! I am the one that started this post way back in Jul 2010, over 1 1/2 yrs ago. Since that time, my mom passed away from pancreatic cancer (May 2011). It was such a hard road for her, for all of us. Just reflecting back to see if I feel any differently now than when I first posted this, given the passage of time and the fact that my mom died.
I'm still not happy about having CML and I don't feel blessed that I have the 'good kind' of cancer. I'm still tired and some days feel sad.
But, someone asked recently, "Is it possible to imagine that a flower could bloom in this 'sidewalk' crack (or pothole or abyss) we are all in"? I can honestly say yes! My thinking has shifted a bit. I can see the possibility. I don't feel that I need to worrry about being a good role model for how CML patients should be. My mom taught me about acceptance and grace with the way she lived after she was diagnosed. I met some great people that I would have not otherwise met. I am following a path of helping others that I may not have otherwise gone down.
Lisa
Lisa,
It is great to hear from you again. This disease changes us, as does life in general. I am so sorry for your loss and I am sure that who you are,who you have come to be as you have been impacted in your life with what challenges you have had and continue to have, is just what someone else needs at their particular moment of need. You have blessed us by sharing. Thank you ! Janne
CML is not a blessing, by any means. My dear friend has taught me to "look for the gift." And I have found many 'gifts' in this diagnosis, and.....from the sound of your latest post, 1.5 yrs after your original one....you too have found gifts! God bless.
