Tuesday, March 25, 2008


I think the one main thing that has helped keep me sane over these last two years, in relation to cml at least, has been the fact that I know what Steven is dealing with, therefore I know what I am dealing with. Waiting for test results is so incredibly difficult because we don't know what the results will be and my mind runs wild with all sorts of horrible scenarios.

Not everyone is as fortunate as I am - knowing exactly where Steven is along this road. Some people don't want their parents, friends or partners to know anything. Maybe this is because they want to protect them. Some people feel guilty about 'putting this worry' on the family and others just simply don't want to be treated any differently from before the diagnosis. I understand all these scenarios, but at the same time understand the absolute agony it must cause the people that love them. Imagine seeing someone you care about sick, or hearing that they have cancer, or being told straight up about it, but then the details, the ups and the downs, don't get shared. Imagine knowing that someone you love has gone for a test and has the results but is not sharing it for whatever their reason. I just know it would eat me from the inside out. I know that knowing these results, sometimes even before Steven gets to hear them, has helped me deal with everything so much better.

And yes, we have been fortunate in that this cml boat has not been rocked much at all apart from a few very minor jumps in pcr results......... but even those, knowing that they had gone up was a thousand times easier and more peaceful that not knowing. When the cbc and pcr tests come back good and Steven is tired, I can see it as simlply life. I know the gleevec makes him tired, but I also know that life at this age, one does get normally tired from work and play. So I don't worry as I would have if I did not know those results.

In many ways, knowing these results has helped me see the person, Steven, before I see the cml in him. I find myself saying goodbye when they leave, only then thinking that I had not thought about cml or anything related to it. Just yesterday I even forgot to do my mama-scan when he came in the door now THERE'S progress! And I know that he appreciates a less 'freaky' mom. He picks up the vibes of when I am worried or when we are waiting for a result. Our conversations have definately moved away from the cml ones to a large extent and I absolutely know that I could not have done this if I was not fully aware of what was going on with his cml.

It must be absolutely frightening reading about cml in others, not knowing what information applies to your kid, partner or friend. So this is where I find my thoughts today: through sharing all his info with me regarding cml, Steven has enabled me, allowing me to cope so much better. This has stopped a tremendous amount of worry, has allowed me to research and know what I am referring to thereby protecting me from the awful scenarios in my mind. It has also allowed me to get back to not to treating him any differently than before the diagnosis. He has really done a magnificient job of not allowing people to do just that. There was a stage when he encouraged joking and his friends called him 'cancer stick' and he would playfully refuse to do something "'cause I have cancer, dude!" and I think this allowed both him and his friends and people around him to relax, laugh and get rid of the tensions that come naturally with cancer. And to see that he was and is, still Steven.

So, from my point of view, the protection of family and friends against the details of a serious disease, probably just worries those that love you even more.

Just my two cents ..........


Mike Jacques said...


There is nothing wrong with being "freaky mom". My wife becomes "freaky wife" every once and a while. Especially around test time.

I am on about the same timeframe as Steven, being diagnosed about two years ago. I started looking up blogs this morning because for some reason the nausea is back in full force. A symptom rearing its ugly head always puts me in the need for some comfort. Hopefully it is just the Gleevec saying "good morning".

Stay strong and keep fighting the good fight.

Rev. Biggus said...

My CML based cancer store.


Finding the silver lining has been a wonderful therapy. It allowed me to find a little humor in the big C.

Silver Linings, Baby!!!!

Annie - Steven's mom said...

Hey Mike
I hope your nausea leaves you quickly!
You doing great on gleevec too? Well, apart from the side effects........
Take care