16 replies to this topic

[LivingWellWithCML]

Wow...I have not posted in awhile, but march 26 will be one year since diagnosis for me.  Still running pretty strong but battling a nagging foot injury, but I will be running the same 5k that I ran a year ago...got the call to report to the ER just a couple hours after running the race - expecting to run it 5 minutes faster, thanks to Gleevec.  I draw so much from all of you online...this community is a huge component to my well-being, and I can't thank you all enough.

So, although I feel and look healthy aside from some Gleevec (shart!  LOL) side effects, I am struggling a bit with stress and anxiety -- can't reduce work stress cause it's just how I operate and our insurance is pretty good, and it's a nice distraction from CML.  But stress does build on top of the upcoming cancer-versary and it consumes my mind at night and makes it tough to sleep.  Fortunately I am functioning at a high level and don't appear to be dealing with depression or anything extreme ... Just some stress related tightness in the stomach during the day and racing mind at night when it's time to shut it down and get some rest.

Any good non-med techniques that work for those of you that deal with higher-than normal daily stress and CML anxiety?  I am trying to read a bit before bed, deep breathing and relaxation techniques, but it doesn't seem to be making much of an impact yet.

Thoughts?

[Marnie]

Hey, Dan. . .let me know when you find out what works.  I'm in the same boat.  Work stress is killing me, and I'm not sleeping at night.  I'd try staying up later, but I have to get up EARLY, and then I'm wreck by late afternoon.  My stress-relief is to plug in my iPod and go for a nice long motorcycle ride.  I highly recommend it!  But how to beat the job stress. . .. .I surely do not know!

Marnie

[ChrisC]

If you want, check out meditating 20 minutes, twice a day, using Transcendental Meditation. It's worked for me, it'll be 40 years this September!

ChrisC

More [added March 17, 2012]:

Today in the LA Times is an intreguing interview with director David Lynch http://www.latimes.c...0,2005252.story

Five Questions: David Lynch on transcendental meditation

David Lynch talks about TM and his David Lynch Foundation for Consciousness-Based Education and World Peace

By Jeannine Stein, Los Angeles Times

March 17, 2012

We know filmmaker David Lynch for the dark surrealism of "Eraserhead," "Blue Velvet," "Inland Empire" and "Twin Peaks," as well as for his deep, abiding love of coffee.

Lynch is also passionate about transcendental meditation, which he first took up "on a beautiful, sunny Saturday morning" in 1973. That passion spawned a book, "Catching the Big Fish," and the David Lynch Foundation for Consciousness-Based Education and World Peace.

Lynch spoke about what TM means for him and why others should try it too.

PODCAST: David Lynch

Can you describe how you discovered TM?

I didn't know anything about meditation, and I thought it was a waste of time. Then I heard a phrase that true happiness is not out there, true happiness lies within. And I started thinking about that, and it had a ring of truth. It hit me that maybe meditation was the way to go within.

One day my sister called, and she said she started TM, and I heard a change in her voice — more happiness, more self-assuredness. And I said, "This is what I want."

I was filled with an anger and sorrows and doubts and melancholy. And I took it out on my first wife. I made her life pretty much a hell. So I start transcendental meditation, and two weeks later she comes to me and says, "What is going on? This anger, where did it go?" Things lift away so naturally.

Your foundation started with introducing TM into schools. What changes have you seen in students who have been through the program?

They say stress is hitting kids at a younger and younger age. There's violence, bullies, there's very little learning, and it's not fun to learn. [With TM] they get more intelligence, they have more creativity, more energy, more happiness, and then when the teacher says something, understanding is growing. The teachers say, "Now Billy can focus, and Suzy is just blossoming." Kids start finding what they really love and finding a way to do it.

The foundation has now expanded to other realms, such as introducing TM to veterans and prisoners.

Prisoners get this technique and they get super, super happy. And they get this ability to pause before they do something. So something that people say is, "Before I started meditating, I just reacted. Now, with meditation, I have this pause and this reasoning: Do I really want to blow this man's head off with a .357 Magnum in my hand?" And then the answer is, "No, I don't think so." They have time to think.

Is it hard to meditate in certain places?

You can do it anywhere. One of my best meditations was in kind of a little closet room with a wall that was by a sidewalk. All during my meditation, there was some guy jackhammering the concrete sidewalk. But as he jackhammered, it jiggled the bliss in me and I was just flying high. It was so beautiful.

Are coffee and TM compatible?

For me, coffee and transcendental meditation go together like a horse and carriage. You don't have to give up anything to do TM. I think most meditators go easy on the coffee, naturally.

I smoke cigarettes too, and most meditators say the urge to smoke kind of lifted away when they started meditating. Not me! My urge to smoke got greater. I just love tobacco.

I eat pretty good, but I just love these things, and that's the way it is.

jeannine.stein@latimes.com

Message was edited by: ChrisC

[ruineto]

I was like that in the first year! In fact i was so depressed i stopped working and almost broke up with my fiancee (I thought i was going to die for sure).

In the second year i noticed i didnt die... that i wasnt even feeling sick at all. My fiancee encouraged me, i got back to work. We got married, we have a 2 months old baby now and its been the 8th year since i've been diagnosed. I barely think about CML anymore. For me its like diabetes or hypertension , i know its there and i need to take my meds but it doesnt change my daily life.

ANyway i think the first year is indeed the worst, after that you start to realize you are still kicking and stop worrying about it so much

[LivingWellWithCML]

Thanks all...TM sound intruiging.  I have never thought that meditation would help someone like me, but perhaps that is the secret sauce...

[Susan61]

Hi Dan:  First let me say that I am glad your doing so good.  I really picked-up on your remark about shutting off the mind.  I just had that conversation not too long ago, and amazed at how many people are complaining of the same thing.  We must all be up at night.  I do not worry about the CML after all this time, but its just the way life is right now with everybody with regard to jobs, finances, the economy in general.  I am on the computer late at night checking messages and responding because I cannot get tired enough to go to sleep.

     I guess we all have to try whatever works for now, and when I cannot fall asleep I pray for everyone till I get tired.

[Judy2]

Hi Dan and everyone,

I'm glad you guys are doing well, that is always great to hear, I'm hoping that continues for many many years to come.

I also want to say I find it interesting that you guys are talking about not being able to shut down. I have barely slept for the last 4 nights, right now it is almost midnight and I have a wash in the dryer and I am about to start ironing. Before this, for the last 6 months, I barely got out of bed. In one way I think it is a good sign that I have more energy but this is going too far. Also, my brain fog is often debilitating. If you guys have any solutions to chill out,except meditation, that makes me nervous, or any tricks for dealing with brain fog please let me know. Thanks.

Judy

[GerryL]

Hi Dan,

The first year was the hardest for me. Now I find I stress around the time my PCR test is due, though once I have had the blood taken I'm not as worried as I figure it is out of my hands now. I'm coming up on my second year in June, but I actually had to stop and think about it - feels like I've had CML for years. It may also come down to what level you are in your results (CCyR; MMR; PCRU) and how you feel about that level.

[LivingWellWithCML]

Hey Chris,

How did you learn?  Looks pretty pricy....

[LivingWellWithCML]

Thanks Billie, I will let you know. :-)

[Lizzybee]

I wonder if insomnia is a side effect of the TKI's.  I've always been a night owl, but it's gotten much worse since I've had CML.  Luckily, I have a flexible job, so I sleep in and get to work any time between 12 and 2:00 in the afternoon, then I work as late as I need to to get my hours in.

[ChrisC]

Hi Dan,

First off, anyone not interested in hearing my answer, please don't bother to read it No offence intended to anyone.

When I learned TM in 1972, I had to save up so that I could pay the $35. student fee! It took me awhile to earn it at minimum wage and keep that money set aside, but I knew I wanted to learn how to have the silence inside that I saw in a friend from high school: he didn't used to be so settled inside, and so dynamic in activity. He was also more involved in his faith, so that was never a concern of mine.

At our local TM Center (you can enter your zip code at tm.org to find the one nearest you) they tell folks how there are ways to pay available for those who's finances are restricted — scholarships such as those offered by David Lynch Foundation, and even medical insurance will pay sometimes when your cardiologist prescribes TM for you; you can always pay with a credit card and pay it off over time.

When you really want this ancient knowledge (basically, it's like plugging in the ol' nervous system and seeing what our human life can be in fully functioning mode, aka our birthright!), there are always ways to structure payment — if the TM teachers and organization weren't paid in the past when teaching the technique and free lifetime followup, then there wouldn't be an organization and centers now, right?

BTW, I was slightly surprised once when someone confided to me that they also do a "trance" meditation: actually, "Transcendental" means to go beyond and "meditation" means thinking; hence "Transcendental Meditation" means to go beyond thinking. That is the state of restful alertness that is always available to us, at the source of thought — all creativity and bliss and love — but is usually not experienced without all the hubbub. With this technique (unlike other forms of meditation that involve concentration or contemplation) you quickly and easily get to this restfully alert state within (still aware but settled and without thought) until some fatigue or stored stress is released, and activity in the form of thought is experienced. You become more YOU, not more like whatever you experience in daily life, more at home and peaceful.

It's very easy to learn and practice, and to me it's worth many, many millions of times what I paid for it!

ChrisC

[pammartin]

Billie,

I know we tend to joke back and forth but several points I read in your post are disconcerting.  We all lead different lives and not many of us live close enough to visit, much less spend any time together, but I have read many who are having issues with anxiety, sleeping, and other items.  Long term people taking TKI's, short term TKI's and new diagnosis TKI users all seem to be experiencing these issues.  I am perhaps beating a dead horse, but I return to that call I received from so called Bristol Myers Squibb asking me about my Sprycel bottle lot number, date issued, and when I received the dosage.  Yes I know each of us are not on the same TKI, but it does seem we are all having similar issues, no matter how long we are on the drug.  I wonder what really goes on in the labs that make these drugs to keep us alive.  I really do.

Pam

[Judy2]

Hi Pam,

Do you think it was a bad batch of Sprycel? If that was the case don't you think our oncs or pharmacists would have been informed? I was thinking your call had something to do with the Sprycel theft. I just think Sprycel is an extremely powerful drug so it is having these unintended effects on our system. A new side effect has developed for me in the last few days. My top and bottom front teeth hurt off and on and it is not connected with eating, I'm not sure what that is about. Have you ever had anything similar?

On a completely different subject, I meant to tell you I like your new avatar. I was never sure what your last avatar was, was it a skunk on a bathroom scale? I used to ponder over it everytime I read a post from you.

Hugs,

Judy

[pammartin]

Judy,

hahahahahahaha  It was a skunk of sorts, it was a very bad puppy learning how to use the outdoor puppy fountain.  I will send you the large photo, even if you don't like dogs much it is a pretty cute photo.  She caught on almost immediately, the others stand around and look either bored or confused, hehe.  I do not believe I can say there was a 'bad' batch of Sprycel, but I still find it interesting Bristol Myers would not say they did not call, they just would not say they did. I just still find it odd the person who called noted a less than adequate batch of Sprycel could be investigated if enough patients reported side effects.  Still not comfortable with that correspondence for many reasons. I sent you a private message about the tooth thingy.  See what you think and we can bring it to the board if you decide it is credible. 

[Judy2]

Hi Pam,

I do like puppies, please send me the picture. I think I may need to go to the opthalmologist or maybe my brain fog is taking over. At first I thought Jamietoftums avatar was a wrench, I thought maybe she was into home improvement projects and then I realized it was the leukemia ribbon. WHAT IS WRONG WITH ME?  I am off to read the private message you sent me. Also, your Bristol Myers conversatiion was weird, I do wonder what that was all about.

Judy