44 replies to this topic

[Trey]

There is no reason to suspect that hormone imbalances or hormone medications have anything to do with causing CML. 

[pamsouth]

Adela, 

just my humble non medical opinion.  Anything with toxicity: whether it be food, water, pollution, or toxicity from drugs of whatever kind. Especially long term and steroids. If a drug messes with your immune system or alters your normal body chemistry.  Well that is just my humble opinion. Unless you don't have to take it don't. But we r brought up in a World where we want a quick fix and TV commercials and the medical profession shove the prescriptions at you. So if I can live with it I don't complain. You take drugs for one thing, and down the road it causes have a dozen other things.

Look up predizone.

Pam

[jjg]

Why we have CML is a question that many ask. Excluding "nuclear events" the current scientific gold standard is that shit happens.

Obviously after dx with CML a lot more shit happens (particularly on glivec). Personally I want to spend my energy dealing with CML as it is right now in my life rather than thinking too deeply about the why-CML-me that I had absolutely no control over.Lots of people will come up with reasons why CML/Cancer/Bad luck etc happens, often they are hoping that their explanation can stop it happening to somebody else, or more annoyingly they are the person without cancer explaining to you why you have cancer and they don't. The humans species evolved partly because we asked these questions, and I hope there are many PhD students finding out exactly why we get CML. But it is important to know when we have to accept, grieve and try to keep moving.

A few of us should spend our days wondering why the sun came up this morning, the rest of us should be using the light to do something useful, or just enjoying the sunshine.

PS what kind of politically correct BS spell check is it that thinks I don't know how to spell the word "shit".

[hannibellemo]

  Thanks for my first laugh of the day. Just what was it they thought you were trying to spell?

Pat

[Marnie]

Maybe it thought she was trying to spell "shart." 

[Trey]

Sharts Occur.  Feces Forms.  Dung Appears.  Poop Protrudes.  Excrement Materializes.  Guano Eventuates.  Manure Develops.  Crap Ensues.  Ploppers Emanate.  Need I go on.....

[Marnie]

Guano. . ..have I mentioned the bat shit story?? 

[August1]

Shart Happens.

[hannibellemo]

I miss the good ole days! Is it my imagination or are there just fewer of us starting out on Gleevec? I haven't heard a good shart story in a long time! Although, Marnie, your bat shit story may hold promise; do tell.

Pat

[Susan61]

Don't drive yourself crazy trying to figure out why you got CML, just be glad that they have found something for us to treat the disease.  When I was diagnosed, I was told it just happens unless you know you were exposed to something toxic.  I asked about it being Hereditary, and was told it is not.  My Aunt and my Grandmother on my fathers side both died of Leukemia.  Now I was diagnosed in 1998, and here it is after all these years that I just found out my mother has CML at 88.  No reason that we can come up with for her getting CML either.  I am on Gleevec for over 13 years, so all I know is that I am still here with the use of these TKI drugs.  I do not really question the how I got it anymore.

Susan

[Marnie]

Ok. . .this is an honest-to-God true story.  No exaggeration.  Really. 

Sorry to hijack the thread, though it is a funny story. 

Some years ago, husband and I were on a canoe trip, just the two of us in our tandem boat.  This was the first time we'd ever done a wilderness trip with just the two of us.  Even our honeymoon was with friends.  Me, husband, 8 guys, plus a couple from Nebraska that we hadn't met before.  (I know, that's a little weird for a honeymoon.. but we had a blast).

So. . .husband and I were alone on the Stillwater stretch which puts in at Mineral Bottom, near Moab, and takes out above Labyrinth, which is a Class IV stretch (that doesn't sound right.. .maybe it's not Labyrinth but something different. . can't remember) but anyway a stretch that's too difficult in the canoe.  We're pretty hot kayakers, but don't do so well together in the same boat (he doesn't listen to directions, though he would express the problem differently).  The Stillwater is a desert run, about a 5-day trip, if I remember right.  .if you know Moab, you're familiar with what it's like.

We camped one night on a huge sand bar.  Cooked dinner, played the guitar (can't believe we actually brought a guitar along. . .that was fun), relaxed and went to bed.   Around about midnight, a big microburst hit. . .horrible, howling winds.  We were afraid our little tent would get tumbled into the river with us in it, so we lay spread-eagle on the tent floor trying to hold it down, while the winds howled through.  The tent was almost completely mesh, with a rain fly.  So when the storm was over, we were laying in about 3 inches of sand, and our bodies had been sand-blasted so we were a mess.  We dumped the sand out of the tent, and then took midnight baths in the ice-cold river, with one person on land holding a headlamp on the other to be sure that we didn't get swept downstream in the dark.  Got ourselves cleaned up and went back to bed.

A couple of hours later, I woke up.  I laid there (I'm a stomach sleeper) wondering what had woken me, when I felt this flutter on the back of my neck.  I felt it again.  I covered the sides of my face with my hands and said, "Hey.. .are you awake???" 

Husband:  "Yes.  I am now."

Me:  "There's something in my hair.  And I think it's a bat!!!."

Husband rolls over, gets a headlamp turns it on and bends over me.

Husband: "Yep, it's a bat.  And there's bat shit all over your head."

Me:  "GET IT OFF ME!!!  GET IT OFF ME!!!"

At that time, I had long hair, in a french braid.  Husband's description was that the bat was spread-eagle on it's back (thank goodness, so it couldn't bite me), tangled in my braid.  The poor terrified struggling thing kept snapping its mouth open and closed and looked pretty horrifying (I couldn't see it, but I could sure feel it).

Husband looked around the tent, found a pair of nylon pants, wrapped them around his hand so he wouldn't get bit, grabbed the bat and RIPPED it off of my head, taking a fair amount of hair with it.  Then he threw the thing, pants and all, out the door of the tent, where the bat wobbled around for a bit and then flew off.

I had to get back into the ice-cold river, take another bath and shampoo my bat-shit-covered head.

We realized that after our first bath of the night, we had gone to bed.  We have a 2-door tent.  I had closed my tent door, husband had left his open.  The unsuspecting bat was simply flying around eating mosquitoes, as bats are wont to do.  He flew in one door, and his sonar didn't register the mesh door on my side.  He hit the door, landed on my head (thank GOD I'm a stomach sleeper!!), got tangled, panicked and shit all over my head. 

Moral of the story, either close both tent doors or leave both of them open.  We live by that rule now, at my insistance. 

I could write a book.  How do these things always happen to us?!?  I think I've told you all the forest fire story which was also the bear who raided our camp and ate my shit-bottle story.  That one ended up online and was picked up by an Idaho newspaper reporter who called me for an interview.  Have you heard the Costa Rica-kayaking in the jungle-after-the-sun-went-down-and-we're-lucky-we-didn't-die-story?  Or how about the friend-got-pinned-in-her-boat-and-we-lowered-husband-head-first-into-cavern-to-unpin-her-before-she-drowned story? 

Maybe it's a good thing I'm not retired.  Less time to get into trouble.

Anyway.. . .that's the bat-shit story.

Marnie

[hannibellemo]

Yep, that's a good one! Your talent is wasted on students - you definitely need to write a book!

Pat

[mariebow]

Hilarious! lol

[0vercast]

I think we all went through this "Why me?" phase, trying to figure out if we were somehow to blame for our CML. Was it the red dye in the Diet Coke, was it that pesky Interstate smog 4 miles from my house, was it the chain-smoking roommate I had when I was 19, etc, etc, etc.

I've come to the conclusion that I am not at fault for my CML. It was just a random genetic accident and an unfortunate set of cards I was dealt. Unless a person is exposed to Hiroshima-levels of radiation, it's almost certain that you had nothing to do with the CML mutation, nor could you have prevented it.

[Rissa]

Great story Marnie.  You lead an exciting life!

[Rissa]

Even after 3 years I still have my "why me?" moments.  And I just say to myself "why not me?".  Or I'll reflect on my past and wonder what I could have done to cause this.  Did I live near a nuclear power plant?  No.  Polluted water?  That's hard to tell these days.  I got shocked when I was a kid.  Could that have caused it?  Probably not.  The questions of why or how will never be answered, but sometimes I can't help but wander into that dark territory.