21 replies to this topic

[mikefromillinois]

I'm 4 years into my diagnosis and the trip has been rocky at times.  Thought I would share the trick I use to combat the CML blues when I get them.

 

A little background.  I go to the Cancer Center on the University of Chicago Medical Center campus.  It is a six-story large freestanding building that is dedicated to cancer treatment only.  Hematology is on the 6th Floor.  Across the street from the building is a freestanding six-story parking structure.  They have 80 valets that park the cars in the structure for those patients who are too sick to walk out of the structure and into the clinic.  The valets are busy all day.  I park my own car.

 

My nurse told me that M-F they handle between 3,000-4,000 cancer patient appointments per day.  Imagine the largest shopping mall you have ever been in at Christmas time.  This place is busier - all day long.  When I am there for my visits I see many, many REALLY sick people.  In fact, the majority of the people I see look really sick.  As in walking dead sick.  As in someone call the Chaplain sick.  I feel guilty when I am there because on the grand scale of things I am one of the healthiest people in the building.  I am certain that most folks that see me assume I am a caregiver and not a patient.

 

On the days that I feel especially blue about my disease I remind myself of all of the deathly ill cancer patients I see at my clinic, most of whom (I assume) would gladly trade their disease for mine.  I certainly wouldn't trade my disease for theirs!  I also remind myself of all the families out there who lost loved ones to CML during the pre-TKI era.  This "anti-blues strategy" works for me.  Chases the blues right away.  CML sucks for sure, but I refuse to let it throw me into a depression funk - that's where I draw MY line.

 

My Mom always said "Count the roses, not the thorns".  Guess I used that logic to create an anti-blues tactic.  It works for me.

 

We have an active group here.  Maybe others would like to share the personal strategy they use to combat the CML blues.  I'm sure everyone here gets them.

 

 

[JPD]

clap clap clap

 

 

Bravo, Sir.

[rcase13]

That is an easy one. I just look at my life. I will do everything possible to keep things the way they are. I am finally genuinely happy. I love my family and our little house in the woods.

I didn't have a good childhood. So I am living it now and will not let cancer change that if I can.

Excuse me now I have to go to bed early so I can get up and hit the beach and boogie board with my son until my face is red. Nothing will take this away if I can help it.

[alexamay09]

I was diagnosed with breast cancer in 2009 and CML in 2012, so had the 'why me' blues until I fulfilled the lifelong ambition of starting piano lessons (at age 56).  You can't focus on feeling glum while practicing the piano!  Its my coping strategy and I love it.  And of course, there are loads of people much worse off. The ride is no fun, side effects frankly crap, but we are still here

 

alex

[dede5]

Mike, I've made those same observations at my doctor's office. I, too, have been in treatment 4 years. I have a panic attack every time I go to my onc and hear someone talking about having a BMB. I feel so deeply for them, and for others who know they're probably fighting a losing battle, yet continue to fight with everything they have. God bless them! As humans, I still think it's natural for us to have moments of weakness, feeling like we've been betrayed by our bodies. Then, it's time to put that away and live our lives. As someone else on another thread put it, "just keep taking that pill".

[kat73]

Great question, mikefromillinois, and I love "Count the roses, not the thorns."  And alexamay, you are so right about the piano.  Hours can go by - the brain is just so busy somewhere else.  I get that distance when I work in the yard, particularly with pruning and weeding.  There's something therapeutic about a certain level of brainwork involved for pruning (a serious job) - you have to decide which branch, where to cut, why, what will be the effect next year, a few years from now, etc.  It's an intricate puzzle to work through a tree or old azalea.  And with weeding, it's like a zen zone of meditation, at least for me, because I can't look for the next weed and the next and for the roots and think at the same time.  So, no think, no worry.  But some animal part of my brain is exercising and when I'm done, I'm nicely tired. 

 

I have lots and lots of coping mechanisms for the whole shmear, but your question was specific:  what do you do when the CML blues hit?  So, here's what I do (or try to, natch):

 

                               1.  Get outside, weather be damned, at least for a few minutes.

                               2.  Get some exercise - walk, do an easy exercise tape, do my old injury rehab exercises (only the ones I LIKE), stretch.  Any of the above, even for just a few minutes.

                               3.  Call one of my CML-tested friends (or my husband.)  MAYBE text one of my sons.  Check this forum.

                               4.  GET BUSY - weed, play the piano, clean, reorganize a closet.  My favorite:  rewrite the To Do list.  Ha.

                               5.  Give up doing anything useful for the day and read.  If it's acceptably evening yet, watch good TV.  Stories.  Other peoples'.

                               6.  If the reason I'm blue has some specificity to it, I review the underlying worry, anxiety, or fear by testing it with therapy questions, like: is this a rational thought or is it catastrophic thinking?  Do you know this is true or could there be another outcome?  And stuff like that.  Get some perspective, in other words.

                               7.  Lastly, I give it the ultimate litmus test:  Is there anything at all you can do about this (worry)?  If there's something you can do, do it.  If there isn't, or if you've done all you can and it isn't under your control anymore, then put it away and stop spending time, energy and space in your brain to think about it.  Just stop.  When it slips back in, say, "No, I already thought about it and decided there wasn't anything more I can do about it, so it's in the lap of the gods.  I gotta go live." 

 

When I wake up some nights with that sudden gloom-and-doom thing I know I've got about 3-5 seconds before the huge wave of heat comes, so I have become adept at QUICKLY turning my mind to holding an image of anything happy or pretty or positive - anything - and focusing totally on that, fiercely - anything fanciful and not real life - and most times I can stave off the big wave of heat.  I know it's waning when I feel rational again, and get sort of cold with the covers off.  It only takes a minute.  It's good training for moving your mind away from the monkey mind blues. 

[mikefromillinois]

Great post kat.  I especially like: 5.  Give up doing anything useful for the day and read.

 

I might just practice that one today!

[Antilogical]

Here are my mottos:

 

1.  It is what it is.

 

2.  No one gets a guarantee that Life will be fair.  It isn't. 

 

Yeah, I'm jaded.  Always have been, but it works for me. 

Interestingly enough, I AM fun at parties.  Go figure.

[hannibellemo]

My motto: "What doesn't kill me, makes me strong".

 

I mentioned my guilt of looking and feeling better than 99.9% of the patients in his waiting room to my onc and it kinda backfired on me. He told me not to feel guilty because I have a very serious disease. I expected him to agree with me! I will take my side effects over their side effects any day of the week!

 

We have a very serious disease, or, as I prefer to think of it, we have a very serious disease that has the potential to be catastrophic. I am doing everything within my power to keep my disease from living up to its potential. 

[JPD]

Here are my mottos:

 

1.  It is what it is.

 

2.  No one gets a guarantee that Life will be fair.  It isn't. 

 

Yeah, I'm jaded.  Always have been, but it works for me. 

Interestingly enough, I AM fun at parties.  Go figure.

This reminds me of a line from the Sopranos.  Where the one-legged Russian woman tells Tony that "the problem with Americans is that they expect bad things never to happen".  There is some truth to this.  We are spoiled.  A billion people dont have access to clean water.  Over 2 billion people (2,000 million) live on less than 2 bucks a day. 

 

There is a guy from Kenya with CML on the Facebook support page - Gleevac quit working and that is the only drug he can get in Kenya.  The only drug.

 

None of this helps when the darkness of depression threatens to overtake you, but it is something to keep in mind.  Prozac and Wellbutrin help, too

[kat73]

hannibellemo - lol at your doc's response.  Gotta love these onc's - 99% of the time, they put their foot in it, conversationally.  They seem to have no idea how things are from our perspective.  I've spent years trying to see things from their point of view.

[Dom]

Here's a nasty little Italian saying that always puts things in perspective for me:

se si può mangiare e cacca,
tu sei più ricco del papa.

[if you can eat and shit,
You're richer than the pope]

[Antilogical]

Dom!

[Gail's]

Or, you could set a timer, give yourself 15 minutes (or whatever) and wallow. Then wipe your eyes and do something else. My shrink says not feeling our feelings can be as harmful as going overboard into them. I find it hard to allow the sadness. Tend to want to plow thru the tough times and tell myself buck up. I find going outside helps reset my emotions, even if just long enough to take a couple breaths and look at the trees.

[dede5]

Or, you could set a timer, give yourself 15 minutes (or whatever) and wallow. Then wipe your eyes and do something else. My shrink says not feeling our feelings can be as harmful as going overboard into them. I find it hard to allow the sadness. Tend to want to plow thru the tough times and tell myself buck up. I find going outside helps reset my emotions, even if just long enough to take a couple breaths and look at the trees.

I'm gonna try the timer idea. Good suggestion!

[tinman1939]

Mike - I like your 'draw a line in the sand' reference. I had the same feeling about finances, but I digress.

 

Golf is my panacea when worrying about CML happens to move to the forefront of my thoughts. I suppose it is most akin to kat73's #2 item on her very impressive list.

 

I am a hopeless hack, but enjoy going outdoors a couple of times a month or more for several hours to breathe fresh air, feel the sunshine on my face, and enjoy the company of birds, turtles and herons. Golf is my therapy. It works every time.

It would be pretty cool to have a golf tournament where the only players are those with CML.Maybe the LLS will consider sponsoring one.

 

Take care.

 

Wayne

Diagnosed in 2006

[mikefromillinois]

I cannot tell a lie Wayne...I stole that line from you!

[scuba]

Mike - I like your 'draw a line in the sand' reference. I had the same feeling about finances, but I digress.

 

Golf is my panacea when worrying about CML happens to move to the forefront of my thoughts. I suppose it is most akin to kat73's #2 item on her very impressive list.

 

I am a hopeless hack, but enjoy going outdoors a couple of times a month or more for several hours to breathe fresh air, feel the sunshine on my face, and enjoy the company of birds, turtles and herons. Golf is my therapy. It works every time.

It would be pretty cool to have a golf tournament where the only players are those with CML.Maybe the LLS will consider sponsoring one.

 

Take care.

 

Wayne

Diagnosed in 2006

 

 

All I can say is .... "Spieth".

[tazdad08]

I look at my 7 year old son and silently think this..... Who am I in his eyes? Who am I in Gods eyes? does this cml crap matter anything to either of them? Is it stopping me from being a dad and a christian? NO! Sure.... I fail at both sometimes, but OVERALL, can I still be both? Dang right I can be. Healthy or sick, everyone fails at times. Yea, I have failed at being a good husband lately. I have became greedy in the sense that I want to stop being being the ass kisser and have started demanding more things to allow me to be my own person. It has definitely caused a lot of issues at home. But, I feel like it is neccesary for me to be happy with the life that I have been granted. And I feel like a healthy, happy life comes down to this.... in this order.... Please God and find happiness within yourself!!! Then you will be able to live a good productive life. Once the first two are in place, The rest of your life will be much easier to handle. It will feel like there is so much more of you to go around.   

[kat73]

tazdad - It's fascinating to me to see the evolution of your path, and where you are now, so similar to where my own wanderings and ponderings led me.  I don't like to call it selfish or greedy behavior - it seems to me much more like just meeting life where we really are, in the reality and truth that we can't be this ideal person we romanticize we used to be.  (Wow, could I be less clear?  Sheesh.)  I think this stand you're taking - carving out your boundaries, your space - is a form of acceptance, which has to be a good thing.  I find myself saying "no" to things (and people) that will sap my energy and being quite content without them.  I care much less than I used to about what people think.  I no longer feel responsible for everybody having a good time.  I have learned to question the conventions.  It sounds like you have found a lodestar to organize your priorities toward.  If you stay kind and open and try to please when it feels good for you to do so, I'm sure your wife is going to adjust.  Hope so!  On another note, did you regain your PCRU status?