33 replies to this topic

[JPD]

FG - My doc was about the same with how he told me.  So, Ill share.

 

I felt the enlarged spleen, actually it had caused pleursy - very insanely painful pleursy - and one Saturday morning I went into the clinic to get it checked out... but it was because I could feel my spleen (didnt know it was my spleen at the time) that I went in.

 

Anyway, the PA on duty checked me out and took a blood sample.  She said it was probably a blockage of some sort and I went home.  She called me a while later, told me that my WBC was very high and another doctor would be calling me.  A while later an Onc called me...

 

He said my WBC was 330,000 (or there abouts, Ive tried to forget it) but he didnt think it was Acute Leukimia.. he said a couple more times that I didnt have "Actue Leukimia" but that I had something called CML - he said that a couple more times and I actually had to ask him if CML was a form of leukimia.  Many dry heaves and tears that night.  Lots of Googling.  Lots of thoughts of not seeing my kids grow up (18, 16, 12) to be married or have grandkids.  No retirement.  Just death.

 

And I still fight that today - that I'm gonna be the unlucky one that none of the meds work for and who wont find a donor or will die during transplant.  That, of course, is my chronic depression and a life long curation of cyicism speaking - NOT the reality.

 

The reality is that I will not die anytime soon (from CML).  I will probably live a close to normal life span (I'm 46... hope to make 70+).  Maybe Ill actually get CURED at some point. But that doesnt stop me from being burdened by a constant baragement of doubt, fear, and angst.  I just gotta work through it.  I just gotta keep taking the pills.  Come what may, just keep taking the fuckin pills. 

[PhilB]

FG - as you can see from the comments above I think everyone knows what you are feeling.  We've all been there and done that and if only I had the T shirt franchise I'd be rich!  I think it does take a couple of years for the mental scar tissue to form over the wound left by the shock and fear of diagnosis and I know just what you mean about those years being a blur.  It DOES get better though.  New memories, friendships, hobbies and interests are like tattoos covering up that scar tissue as you cease to be 'the person with CML' and become instead 'the person who's learning Karate with her kids' or 'the person who cycled 100 miles in a day' or even 'the person who one day told a joke so funny that one of her co-workers wet themselves'.  Distance is the only thing that gives a sense of perspective and in time your CML will become just a small part of the wonderful unique human being that is you as you go on to live a life that is full in both length and content.

[JPD]

FG - as you can see from the comments above I think everyone knows what you are feeling.  We've all been there and done that and if only I had the T shirt franchise I'd be rich!  I think it does take a couple of years for the mental scar tissue to form over the wound left by the shock and fear of diagnosis and I know just what you mean about those years being a blur.  It DOES get better though.  New memories, friendships, hobbies and interests are like tattoos covering up that scar tissue as you cease to be 'the person with CML' and become instead 'the person who's learning Karate with her kids' or 'the person who cycled 100 miles in a day' or even 'the person who one day told a joke so funny that one of her co-workers wet themselves'.  Distance is the only thing that gives a sense of perspective and in time your CML will become just a small part of the wonderful unique human being that is you as you go on to live a life that is full in both length and content.

Preach!  Beautiful words, Phil.  Honestly. 

 

But for those still not >.1 -- its a bit more difficult.  I say that not knowing (or recalling) what your situation is, but I have no doubt that the anxiety doesnt quell a little bit when you've hit those magicall (seemingly mythic for some) benchmarks.

[kat73]

GREAT words, all.  Frogiegirl, one other thing I might throw your way that helped me:  therapy.  There are many low-cost ways of going to therapy for awhile.  Your oncologist MIGHT be a good person to ask for finding one.  It will not solve all your problems per se, but it gives you a non-judgmental, skilled listener who asks questions that make you do a lot of thinking.  It helped me on my way by giving me some framework or perspective and ways of approaching the bad stuff when it inevitably barges back in.  I went once a week, off and on, for two years and I still use it and feel its good effects to this day.  Worth it, definitely.  When you mentioned PTSD, that got my attention for sure.  I know non-CML people might think you're being a little dramatic, but WE can relate.  I had a string of bad luck catastrophes since 2012 (after being so sick on Gleevec from 2009-2011):  broken ankle (surgery), 3 separate skin cancers (serial surgery), two separate incidents of DCIS (2 lumpectomies), a horrible dog bite (infected - more surgery and hospital 11 days), and finally a mastectomy and DIEP flap reconstruction.  So, yeah, definitely felt a little PTSD!  We all have this kind of baggage, and it gets heavy to carry, enh? 

[snowboots]

We are all with you Frogiegirl! I just started my journey in January and the side effects are just now starting to kick in. I have an appointment tonight to get my hair chopped short because of all of the hair loss I have been experiencing. I think that will be the hardest thing to accept so far. I have a horrible case of big warty skin growths that I am seeing a dermatologist for. All so embarrassing and visible evidence that I am sick. It is very frustrating for me to remember that I felt perfectly healthy before they started "poisoning" me with the Gleevec! So it makes me wonder what else is in store for me. I am at that point where people are starting to ask questions and I need to try to explain.  What gets me through right now is that my Dad and sister both died of kidney cancer, and when I remember what they went through the CML doesn't seem so bad. I already have more years on me than either of them had.  I guess I have always felt that sooner or later the big C would catch me too but right now I feel kind of fortunate that it's CML and not something much worse. Let's stick together and we'll get each other through. I am so grateful for this forum.

[TeddyB]

P.T.S.D: Yes indeed, i went to a psychotherapist a few months after DX, and he told me the feelings i had after beeing dx`d were much the same as PTSD. I came face to face with my own mortality, i also thought i was are going to die from CML any day soon. Talking to him helped a lot, and i kept seeing him on and off for about a year or so, after that i moved on, and thought to myself i am going to beat this, the meds are wokring (knock on wood) and the side effects are bearable though anoying, but life is worth living, and fighting for.

[Frogiegirl]

Snowboots I get the long hair thing. Its something I still struggle with daily. I was known for my hair....and now its gone:( I'm trying to find something else that defines me....still working on that.....Just thought I would share. maybe knowing we are going through the same thing could help both of us

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[snowboots]

Just back from my haircut - not as scary as I thought it would be. My hair is curlier now and I will be happy with it if it doesn't get too much thinner. I feel for you though. I donated hair twice - once to Locks of Love and once to Beautiful Lengths. But they were both willing donations and I was grateful for full, thick hair that always grew back. I thought about Sampson losing his strength when he lost his hair. I have decided to live with the mantra that my ponytail is gone but not my resolve. It does help to share with you - you are still beautiful!

[azteri]

Unless you learn differently, treat CML like the pain in the ass it is. If it becomes more than that in the future, you'll deal with it then. Like you said, you don't want to waste your life worrying about it. Life goes by too fast.

[Damerault]

Ive got my next check coming up in a couple weeks - hot on the heels of last test's uptick (.50 - .78).  

 

And its getting worse. 

 

I just repeat this mantra when shit gets heavy:

 

The meds are working

The cancer is dying

I will live to see a cure

 

another one I once read in someones signature - TAKE THE PILLS, LIVE YOUR LIFE.  It doesnt matter how badly we dont want CML, we have it.  That die is cast.  But I honestly dont think the CML will kill me - and I am a chronically depressed cynical nihlist with a bad attitude in general ... working on that, btw.

 

A good friend of mine (distance runner, much sunnier disposition, religous, strong-willed, loving hearted 46 year-old mother of 4)) got DX with stage 4 colon cancer the same month I got my DX (October '13).  She died in January.  She didnt get a miraculous drug that somehow konks out a certain protien (or whatever TKIs actually do).  We are actually blesssed!  Yeah, we got the Big C ... but we CAN live with it... and maybe someday be cured

 

The meds are working

The cancer is dying

I will live to see a cure

 

I love that. thank you. 

[Terran]

That is beautiful hair in those photos. My hair was ridiculously fine when I was healthy. But funny enough I had my hair chopped last month in a fit of frustration. So now I look different, besides the crazy textured red skin, to match the fact that I'm learning how to be different. I'm glad we get to be different together.

[Frogiegirl]

awwww thanks Terran it was pretty hair, but ill trade it any day as long as I get to see and hold my boys   that doesn't mean its not rough looking back at myself in the mirror and wondering who the hell that is?  the skin issues are hard too! I was scratchen my scalp yesterday not realizing I was doing it, and my youngest son said " you scratchin like nina"(our Chihuahua) LOL Aren't kids the funniest!

[scuba]

I'm just about 5 years in and I remember being where you are. I won't say I don't feel that way anymore but every time another test result comes you feel a little different. They're never easy but after you keep accumulating them you start to get a little more secure. The reality is no one can tell, you how long you will live with cml because no one knows how long they will live, mortality and all. You're really not much different than anyone else, you've just had this trauma that disrupted your life and has forced you to contemplate your mortality at a young age.
Here's what we know given the current state of cml treatment, the majority of us will live a normal life span. We are likely to have our disease until the day we die, but unlikely our disease will be the cause of our death. One doctor told me that realistically given my age and the drugs I am taking I will probably wind up losing about 10 years off my life from this. I think no one knows and that makes us no different than anyone else. You already said it, what if you make it to 80 and didn't live your life? Don't do that no ones future is guaranteed, live your life and enjoy each moment to the fullest in spite of your condition.
Also please don't hang on PCRu, just be happy if you are below MMR.

All the best

 

 

Gary, you wrote,

 

"One doctor told me that realistically given my age and the drugs I am taking I will probably wind up losing about 10 years off my life from this"

 

I am not so sure that we'll lose 10 years as much as maybe gain 10! I suspect many of us are more aware of our health now and are doing things to boost our immune system through diet, exercise and getting tested so often. Many people die suddenly from disease they did not know they had or from a chronic condition they did not take care and treat.

 

As a result of CML, I am a heck of a lot more knowledgeable about my body, nutrition and other things than I ever have been. CML was a wake up call. I even went to my primary physician who I had not seen in 15 years just to get a baseline for renewed health awareness regarding my heart.

 

Granted - Tyrosine Kinase Inhibitors may harbor long term dangers that could shorten lives. All the more reason why I decided to stop taking mine and monitor. But TKI's may also lengthen lives by inhibiting other diseases for which there are no trials yet, but which there is some supporting science.

 

Getting CBC's regularly as part of PCR testing may spot things early enough to treat.

 

We can't live  forever - all the more reason why your note is spot on about getting on with things and live for now and each day we are graced to have.

[CallMeLucky]

That's a good poin Michael, people with cml are more aware of their overall health and may in fact wind up living a healthier lifestyle because of it.