32 replies to this topic

[hannibellemo]

Wow, Pam, I want you had had! That sounds wonderful!

Pat

[GerryL]

Dina,

I love your doctor - hopefully he is is a good as his sense of humour.

[Happycat]

Dina,

As far as I can tell, researchers aren't as focused on the causes of cml as they are in looking for a cure.  So, if even the experts don't know the causes, how can we know for sure?  That said, I'm awfully grateful they are looking for a cure!

If you want tot read something to gain some perspective, try "The Emperor of All Maladies".   The book is about the history of cancer and the development of our knowledge about it. Leukemia is a good chunk of it, too.  The author, Siddartha Mukharjee (not sure if I spelled it right), won a Pulitzer and it is really well-deserved.  He writes in an engaging voice, and weaves anecdotes about his patients into the narrative, so to humanize what could have been a dry medical treatise. 

Traci

[WoofWoof]

I'm always afraid that it might have been something I did that caused the CML so it's good that I don't know for sure.

[Dina]

Thanks guys I couldn't agree with you more,

sometimes I think that I would probably handle my diagnosis a lot better/easier if I just didn't bother to stay healthy,

wish I had done smoking, drinking, never bought organic,never exercised, things like that, I truly believe now  if you eat healthy and

take care of yourself it doesn't meant that you will stay healthy............. well at least I don't have diabetes, cholesterol, high blood pressure, etc only CML

[CallMeLucky]

Its normal to feel that way because you are frustrated, but in time you will realize that your healthy life style was beneficial because it better prepared you for this challenge in your life.  Now more than ever you need to keep healthy and do the right things so you can continue to fight this disease and otherwise be healthy.  What's worse than CML is having CML plus other nasty illnesses.

Life is going to throw curve balls at you, you should be proud of how you have taken care of yourself up to this point as it will help you deal with this illness.

[ritan/]

i feel that way too. i never smoked a day in my life. i have a brother who smokes heavily. and i'm the sick one? seems unfair. the good thing for me is that the same day i was told i had CML, i got to hear "you're perfectly healthy otherwise than the CML". so at least i've only got this one thing to deal with. thank god i don't have high blood pressure, high cholesterol, diabetes, liver damage, lung cancer, etc. it sucks and feels unfair that i'm sick, but really, what is fair?

on another support group i met a woman who is about 30, never smoked a day in her life. dx with stage 4 lung cancer. the treatments so far aren't really working. she's probably dying. my life seems more acceptable when i toss in some perspective (just me personally).

[CallMeLucky]

The older I get the more I realize that sometimes bad things just happen.  We can't control what happens to us, we can only control how we choose to deal with it.  I joke with people and say I'm one of the healthiest cancer patients alive - there's Lance Armstong, then me

[Dina]

So true, life can be so unfair and there are times when I'm nothing but just frustrated about the whole situation,

but then when I think a little deeper, hey it could have been even worse, there are so many nasty diseases out there,

Someone already said that all of us form some kind of answers, this is my answer:

"If I was that unlucky to get CML, a very rare disease, maybe I will get lucky to witness a cure in the near future"

That keeps me going.

[Judy2]

I never smoked, drank, used chemicals, I don't even drink caffeinated drinks and yet I was dx with two rare life threatening illnesses within 3 months of each other last year. Some of us are luckier than others health wise, it's just how it is, so we get as  much info about our disease as we can, take our medicine and live our lives. It really could be worse, we have medicine and each other to help us through. I  have to say, I am very thankful for the LLS, I don't know what I would have done without this board.

Judy

[GerryL]

One of my GPs - who worked with me to finally come up with the diagnosis, by sending me to the specialsit, commented that one of her other patients was in the other day. Everything looked good and he seemed fit and healthy, then just as he was heading out the door he mentioned night sweats to her. Which set her alarm bells ringing for leukemia, she told him they should get some tests done. He commented that he might as well get his prostrate checked. In the end he was diagnosed with CLL (which isn't the worst leukemia) but also has advanced prostrate cancer which they can't do anything for.

The one thing in life we can all be sure of is we are going to die, what we do with our lives in the meantime is the thing that counts.

[pamsouth]

Judy2, 

My brother-in-law who is now 75 years old.  He was  always a health nut.  He was a military man in the air force 20 years, & then worked at the VA another 20 years.  Very athletic, playing tennis with the pros's and golf.  Ate his greens and health food and vitamins and all.  I will say he loved to grill his steaks.  I think in the old days beef was free roam with no hormone and antibiotics.  Anyhow in 2006 he was diagnosed with Osteo SarComa that fast kind.  His knee had been bothering him when he played tennis.  They cut his knee off and several inches of the tendons or muscle, whatever.  Because he was so healthy physically fit otherwise, they gave him the most chemo you could give anyone.  Two year later it showed up in his lung and he had surgery, no more chemo, another couple year or so it show  up again in his lung surgery on one lung, radiation on the other.  No chemo.  Doctor said any more chemo would only give him a 10% chance of killing it.  So he take a lot of herbs still plays tennis and golf on that replace knee and goes to the beach a lot and takes care of my sick sister.  He still thinks he can beat the cancer with all his herbs and exercise and sunny Florida.  However I do think my sister's health drains him.

He did say he tried to get his cancer related to his military in Viet Nam, but the government said Agent Orange and chemical that were used didn't cause his kind of cancer.

PamSouth

[Judy2]

Hi PamSouth. I'm so sorry about your brother-in-law but I'm glad he's able to enjoy his sports and sunny Florida. I'm also very impressed with his positive attitude.  As for me, I'm pumping so  many chemicals (all the meds.) into my body that I'm either going to be so preserved  I'm going to live forever or my body is going to self-destruct. Either way, I plan on enjoying the holiday season.  HAPPY HOLIDAYS TO EVERYONE

Judy