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Don't mean to be a downer...just cannot get this off my mind

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#1 Tedsey


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Posted 23 February 2012 - 12:53 PM

I guess I love to torture myself.  But I have been carrying this around for a few days.  Here it goes:

My husband read my just 3yr old the story of Cinderella for the first time 2 days ago.  She found the story very sad.  The part she honed in on, of course, was the fact that Cinderella had no mother.  I heard her stopping and asking my husband about that as he read.  OK, here it comes:  A bit after the story, she comes to the kitchen where I am preparing dinner.  She tells me boldly with a giggle, "Mama, mommies never leave their little girls, do they?  That only happens in stories and fairytales."  Being blindsided, I kind of sidestepped the issue and told her that I never want to leave her.  That was OK for then.  But the next day, I hear her as she is playing with her dollies and talking to herself, "Mommies never leave their babies...". 

Well, I just needed to vent.  Even if I didn't have CML and believed that I would live "forever", it would have made me sad.  But it is especially unsettling knowing that things could go wrong and I could leave her early, (kicking and screaming, mind you, for the grim reaper will have a monster fight on his hands).  Nevertheless, I get superstitious and feel that what she had said is some kind of omen.  I had to miss my last 3 month appt. because the kids were sick.  Since my onc is so busy, I will have my PCR a month late.  That is a good sign in itself that the doc doesn't feel the need to get me in ASAP.  But I cannot help but let the possiblity impending doom hover around me.  Don't most of us live PCR to PCR?  After a period of feeling used to having CML, I am scared again. 

I think I gotta get less drama in my life.  But how do you do that living with cancer?  Guess I am a victim of growing up in the USA with Hollywood as a big influence in my culture.  Or it comes from just having a lot of tragedy before CML in my life.  Maybe I am just wired that way.

Thanks for giving me a space to let me get this off my chest.


#2 CallMeLucky


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Posted 23 February 2012 - 01:23 PM

Unsettling thoughts for sure.  I have often wondered how insightful (borderline paranormal) my youngest is (he's 5 now).  Is it real or is there an element of my interpretation of the things he says making it more than it is?  From the time he was very young he always talked about my wife's mother.  This is odd because she died many years before he was born, but he often talks about her as if he knows her and has a relationship with her.  It was particularly surprising when he described her one day as flying with butterfly wings wearing a purple dress with polka dots.  I thought it was silly but my wife was very surprised.  It turns out my wife's niece who was about five years old when my wife's mother died had told everyone the day after the funeral that she saw grandma Patty flying through the air wearing a purple dress with polka dots.  My wife had never told my son this story, she had forgotten about it until he said it, and to this day we do not know of anyone who told him about it.

Around the time I got diagnosed he started to say some weird things, mostly talking about how we would all live in our house together forever and never leave.  I took it that he was picking up on the tension in the house, knew something was wrong, and was just looking for assurance that would make a four year old feel better.  He often talks about being a builder when he grows up and figuring out a way to build a structure that can reach heaven so he can go see Grandma Patty and all the other people who have died - but I think he knows he can't really do that and it frustrates him.

Anyway, I went off track there for a bit - kids have some outrageous imaginations and perhaps there is a considerable amount of intuition to what they say.  I don't proclaim to understand the first thing about how the universe works so I don't rule anything out, even if I have doubts about certain things, I always try to keep an open mind.

If I had to guess, I would suspect that your child is engaging in typical child's play and more than likely it is your experience in life that is taking a particular interest in what she is saying.  As you said most parents get upset about the topic, even my wife who is in good health gets very antsy when we have to talk about our wills, particularly the part about who would take care of the kids.  She gets very upset thinking about not being around for the kids and someone else having to raise them.  I think we (people of health afflictions) are particularly sensitive to this because as we have discussed, our mortality is more front and center for us then it is for the average person wandering through life with ignorant bliss.

If you did want to read into it and go with the premise that maybe she is tapping into something bigger than herself, I would actually take some comfort in what she is saying.  The statement "mommies never leave their babies" doesn't have to be tragic irony.  Perhaps you might choose to see it as a message letting you know it is alright to relax a little.  Sadly we know that sometimes mommies do leave their babies, some by choice, some without a choice, but maybe in this case you are being told that you are not going to have to leave your baby.  Certainly there is nothing immediate that suggests you are in any danger.   

You have had a rough go of it no doubt, but you have shown that over time you are improving.  There does not appear to be anything particularly aggressive about your CML, how far post Dx are you now?  I think it is more than two years.  You are not a speedy responder and your counts have given you issues, but in general it appears you are plugging along.  I know for me that has been good enough to plug along.  I would like to live many more years, but I have made my peace with making it to the point my kids are at least grown up enough to take care of themselves.  While things could happen that are out of my control, I feel that the state of medicine today and the weapons we have in the arsenal should be sufficient to buy me the time I need.  I think you are in the same place. 

Certainly there are no guarantees and the stress and fear you have are real and understandable, but at the end of the day you are doing pretty well, and that is really all any of us can hope for.  Beyond that, I see no reason to spend too much time worrying about things that may never happen.

Hope this uneasiness passes soon.

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#3 rct


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Posted 23 February 2012 - 01:41 PM

It hasn't been easy for you, so there is no way you can't have those feelings and thoughts.  We live it every day.  Sure, PCR is good, but everything else is all screwed up, so what's the difference?  Most of those around us are doing just fine.  The world doesn't understand the world of a CML'r, and in the world of CML'rs, the ones it goes well for don't understand the ones for whom it doesn't go well.

I think about you all the time, hoping you are doing well, all of you.


#4 lthouse612


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Posted 23 February 2012 - 01:45 PM

Hi Teds...

All I can say is wow... isn't it something how the innocence of a child can bring us to our knees?...  I can totally relate to your experience...all except I'm a daddy instead of a mommy.  I've been a stay at home dad since 2007... I was dx Dec. 2006 and tried going back to work but that didn't go so well, so long story short, I've been home with my 2 boys ever since.  Getting back to your story... I have a 6 year old and he's very compassionate for his age... it amazes me.  Anyway... I've gotten into this habit with him... after books when he goes to bed I lie next to him just for a little while till he falls asleep.  At first we thought it wasn't a good idea but anymore I think to myself I don't mind, I just want to spend any amount of time with him that I can especially if it helps him to fall asleep and he lets me.  He won't be this small forever and eventually he will grow out of it.  So, just the other night I was lying next to him and he turns to me with a very serious expression and says "daddy, will you always be here to protect me?" That moment was one of happiness and sadness all at once but I could see he had really thought this out.  My feelings have been really tested the last few months in that I just lost my mother to liver cancer and I've been all out of sorts...to say the very least.  Him saying this to me hit me pretty hard... thinking to myself, how long will I be here?  I know it's something we've all thought about at some point... our mortality.  I think our children know so much more about how we're feeling than we can even imagine.  I was sitting on the couch just this morning (it was a rough morning) and he came up and simply asked me "daddy, are you having a hard time?" and then gave me a hug before I even said a word.  I almost cried... no, I did shed a tear as I got up and got busy making breakfast for him and his older brother (he's 10). It makes me feel badly in that however I'm acting is certainly speaking to them in ways that worries them.  Like I need to check myself and try better not to be so transparent in my feelings. The last thing I want is for them to worrry.  Sometimes I really wish I had the ability to turn off emotions altogether, you know?  Anyway... I guess I'm just saying ...I hear you, and I get it, and at times I'm more scared than even I care to admit.  Take it easy...


#5 CMLSurvivor


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Posted 23 February 2012 - 01:50 PM

I agree with your daughter, mommies never leave there babies. I believe that when you leave this earth in the physical sense, your spirit is always with your children. We mommies and daddies are there in there hearts and we look after our children and try to help guide them from our spiritual world. 

Getting rid of stress and anxiety is nearly impossible for us, but we can attempt to do things to try and relax us, like take a hot bath, get a massage, or go get our toes done.

#6 Rissa



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Posted 23 February 2012 - 03:04 PM

I hear 'ya Teds.  I just keep praying that I'll live long enough for my kids to be on their own.  But I'm sure if I get to that point, it still won't be enough time.  And talking to your kids about death is so hard.  I remember when my daughter asked me if she was going to die.  She was only 5 at the time and her grandfather had passed away the year before.  I was stunned that she asked me such a deep question.  I said yes, everyone eventually dies.  Before I could say anything more, she burst into tears and said she didn't want to die.  So then we had a conversation about heaven and I tried to make her feel better.  It was just so sad to see a little bit of her innocence slipping away.    

#7 Happycat


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Posted 23 February 2012 - 08:37 PM

I don't know, Teds, I understand where you are coming from, but I'm not sure if that is where your dd is coming from. In her experience, a mommy is always there for her child. Cinderella was disturbing, because it presented a situation she never even considered before. I think it's disturbing to her, not because she somehow feels it will happen to her, but because the concept of a motherless child is simply alien to her.

You, on the other hand, know all too well that sometimes children DO grow up without a mommy. And your own fears of not being there are naturally brought to the fore. I would not read her comments as an omen. She's just a child trying to figure out her world.

We are all products of our experience. When my dd was switching from breast milk to cows milk, and she started throwing up, I got worried that the vomiting was due to a stomach tumor, because that's what happened to my dad. Even though a part of me knew the milk allergy was most likely, when it didn't stop after a few days of eliminating milk, I was right down in the ER with her, insisting she had to be checked for a tumor.   My experience drove me to that, and it was hard for me to let go and accept it was just an allergic reaction that took awhile to dissipate.

Your experience with CML and being forced to confront your mortality rather sooner than you expected changes your perspective. What once in preCML days would have been just a sad commentary from your dd looms much larger to you now. Just realize it is a matter of your perspective, and not a portent of things to come.

One other comment - if your dd is sensitive about the motherless child, I'd hold off on a lot of those Disney movies!  There's a bunch I can't stand to watch. I've never had the guts to watch Bambi, I cried through the fox and the hound, and I bawl every time dumbo's mother sings to him. (I admit it, I'm a sap.  My kids are used to me crying when we read books, too.  Just one mention of Harry Potter's orphan status is enough to get me choked up!)


#8 Tedsey


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Posted 25 February 2012 - 04:47 PM

I just want to send out a heart-felt thank you to all of you (Luck, rct, Traci, Rissa, Mark, CML Survivior).  I cried reading your answers.  What you wrote touched me deeply.  I am totally not into magical thinking, but sometimes things just feel like omens, or the illogical seems to ring true.  Two years and 3 months after dx, I am still worse for wear with this CML thing.  I must admit that I have a cluster of extremely painful ulcers (thanks Sprycel) at the base of my tongue and one on my lip.  I have been very miserable, (but I lost the 5 lbs I needed to!  Hurrah!).  And I think my feeling terrible has made the depression flair up a bit, which grately influences my perspective.  Thank you all for listening and your supportive words.  It really made me feel so much better.

Traci, the Disney movies often scare my kids.  They have only seen parts of a few and it has been a bust each time (except for Dumbo, which my son loves, but my daughter just cries and cries--and I did too when little).  Thanks for the advice to stay away for a while.  Nevertheless, I suppose we shall undertake the trek to Disney World when they get older (it is nice to talk like this again, for a long time, I wouldn't allow myself to even plan the next month).  Since I am a relatively "older" mother and will even be older then, I may just play that "persons with medical conditions who cannot stand in long lines" card, (thanks Lucky for the idea).  

Mark, I know who you are and know you have been through a lot.  You are a very strong person.  And I will totally embrace what Lucky said about what my dd said as being a good omen.  Even if it is not really a magical thing to say, she just may be right.

rct, all the best to you and your wife!  You guys are still in my thoughts.

Happiness and good health to you all,


#9 Judy2


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Posted 25 February 2012 - 06:11 PM

Hi Teds,

Have you ever tried Orajel for the ulcers? I had mouth sores from another conditon and antihistamines helped with that. Also, Billie has a hole in her cheek, I think she thinks from the meds. also. Does it ever end?


#10 Susan61


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Posted 25 February 2012 - 07:53 PM

Hi Tedsey:  I cannot top some of the other responses, but I think we just have a tendency to think about where we are going with our CML journey.  I can only imagine how all of you feel who have such young children.  My daughter is 38, and I do not want to leave her either.  My  husband depends on me  to keep it all together all the time, and I have told him that as bad as it sounds and how much I would grieve I hope he goes before me.  He would never survive by himself.  I have always been the strong one, and someway somehow I would get through all the  obstacles that life throws at us everyday.  He had to admit I was right, and my daughter said she would have to be around a lot for him too.  You would have to know all the things we go through all the time.  Its never a dull moment around here.

     I would not take any of that to heart, and just tell this very young little girl that Yes you will be around.

     I think this crazy world will take us before our CML ever does.  That could be a  whole new topic.

     I know you have been through a lot, and I was following you all along all this time.  Somehow I got lost in the shuffle when we got so many new people, and so many young ones also.  How are you doing?  I see your on Sprycel.

I would have to go back into the archives to see what has been happening with your treatments.  Are you just getting PCR testing, or are you still getting BMB too.


#11 Marnie


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Posted 25 February 2012 - 09:04 PM

Hey, Teds. . .sorry I've been out of touch. . .parent/teacher conferences have kept me busy for the past few days.  I wish I had words of advice but I don't know how you are feeling.  Being a "mom" to cats (both now deceased) isn't in the least the same as being a mom to real human beings.  And on the lighter side.  .  .I'm always super glad to send my middle-schoolers home at the end of the day. 

I am going with Susan's belief that something else will get us before the cml does.  Enjoy each day as it comes. . .you'll have lots more with your children.  They are so lucky to have you for a mom.

All the best,


#12 PhilB


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Posted 26 February 2012 - 03:34 AM

Hi Teds,

I  couldn't agree more with Traci's post about your daughter's natural reaction to the strange and scary concepts in Cinderella.  I always wonder how kids who live in wooden houses cope when told the story of the three little pigs.  The big difference here is your reaction and the good news is that you seem to have successfully reassured her and she believes (and tells her dolls) that it's the kind of thing that only happens in stories.  Awful for you, but you held it together and made sure it wasn't awful for her which is great.

As for Disney, about 3 days after I was diagnosed, when I was still in the complete mess stage, my wife left me in the car with our youngest son whilst she went shopping and handed me the book of the Lion King to read to him.  Given that Simba's dad dies tragically about 3 pages in that really wasn't a good choice so I have a pretty good idea how you must have felt.


#13 pammartin


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Posted 26 February 2012 - 09:49 AM

Hi Teds,

Children!  They are wonderful but boy they can really kick you in the stomach with their words and thoughts.  My son will go for weeks and say nothing then he will say, 'You can't die, I am too young not to have a mother.' or 'If you die where am I going to live?', or my personal favorite, 'This cancer is killing you and I am worried because no one will take care of me when you die.'  Geez!  If I didn't already need a reason to be depressed, he gives me several of them.  You are right, in life there are no guarantees, but we all have an existing disease that could turn ugly, that just adds fuel to the already smoldering fire.  I hate the fact I live from blood test to blood test, I swear to myself, bargain with myself, and even become disgusted with myself over this fact, but I still cannot get out of the horrid cycle of PCR to PCR test.

I understand what you are saying about your daughter 'knowing' something you do not.  This may sound a bit strange, but am going to share this story anyway after some background notes.  I have mentioned many times my son is autistic, although high functioning, he is different from his peers.  My son has a full time educational aid in school, this aid reads school work to him, helps him understand concepts, pushes him when he is slacking, provides detailed notes and hints, my son's attention span is not the greatest even with the meds he takes.  Ok, because they spend so much time together, they are close, closer than some parents would appreciate, for me it is a blessing, whatever happens at school I do not have to worry, the aid will handle the situation and pass along the event to me.  Now you have an idea of their relationship, here is the strange situation.

Five years ago the aids mother was very ill, she was in the hospital and they were making her comfortable.  It was a Saturday afternoon and my son was drawing at the kitchen table.  Out of the blue at approximately 2:10 p.m. my son looked up and calmly said, 'Mrs. K (the aid) need a hug right now.  I smiled and told him it was nice he was thinking about her.  At the funeral the next week the aid and I were talking and she happened to mention her mom passed away about 2:00 p.m. on Saturday.  I almost fell over,(for real), my legs got week, I turned pale, and people around me were concerned for my immediate health.  Was it coincidence, is my son clairvoyant, or does he have such a bond with his aid he just knew she was hurting in the moments after her mother passed away?  When I think of this story, and then I hear my son make those statements I listed above about my situation, it scares me beyond belief. 

We have no guarantees, we have no set time line we can follow to find comfort or be frightened about how much 'time' we have on this earth with our loved ones, even if we didn't have CML.  I believe your daughter is trying to wrap her thoughts around this disease, and she has the same worries you experience, just in younger format.  She is afraid her mom might go away just like the Cinderella story, and although I cannot say this with 100% positive assurance, I am betting she would have come to you with the same question if you did not have CML or any other disease.  We are the driving force for our children, we are the caregivers, the friends, the disciplinarians, their lives and when they hear a story, even a wonderful fairy tale like Cinderella finding her prince, children tend to focus on the negative aspects of the story, yes Cinderella ended up with a good life, but she did not have a mother to share her good fortune with. 

If you find a way to reduce the drama in your life, please share your techniques, I have been unsuccessfully trying for years, the past 5 months since diagnosis have been nothing but drama, most of it self imposed.  Have a great day Teds, you are in my thoughts and prayers.


#14 jrsboo


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Posted 26 February 2012 - 11:28 PM

Per Disney World, don't know exactly what Lucky told you, but apparently there is a way for the ENTIRE family not to stand in line.  See here: http://www.leukemias...disneyland.html 

Apparently the whole family gets a blue card and goes to the rides through the exit, no waiting!  Do not wait behind the wheelchairs, this is even better than that line!

As for Disney movies and stories, I have always thought they were too depressing.  In order for the hero to triumph, he must be allowed to make the mistakes a parent wouldn't allow, so the parent must be dispensed with early in the story.  Yuck. 

I don't have any terrific words or ability to alleviate anyone's fear or pain.  Just wanted to know someone is listening.


#15 Judy2


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Posted 27 February 2012 - 12:03 AM

Hi Teds,

It is so hard to live with CML especially when we have others who depend on us. It is hard to live from PCR to PCR. Everytime I hear of someone who was doing well suddenly losing their response my heart skips a beat. Of course I feel terrible for the person but  it also causes me great anxiety. After all, I think that could happen to me or to one of my dear friends on this board. I guess we have to make a decision in life, though, we  have to decide how we want to live it (easier said than done). I am trying to concentrate on the fact that we have great treatment for our disease and that the odds are in our favor to live a long and healthy life.  My father died when I was 11 years old. I worried every day for the next 38 years that my beloved mother would pass, I worried every day... and for what? I spent 38 years of my life worrying!!!  Each day that I was afraid I would lose my mother was a day I ruined my life just a little bit and for 38 years it didn't come to pass. Teds, with all the great treatment we have for CML I'm sure you will be here to see your children grow into adults and they will see their mother grow to old age.

I'm praying for you, Teds,


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