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 ..........

Saturday, March 22, 2008

One day at a time

I wanted, nah - maybe need, to get some of my thoughts out- so you get them.. Just thoughts.

I wrote a long and convoluted thing on the blog recently about the fact that for the first time I fully recognised my son as a man, yes - a MAN! In many ways I am very sad that I discovered this while he was sitting on that offensive crinkly sheet on the bed in an oncologists office! But on the other side, I finally got it! For this I am really grateful. Yes, I knew he was a man - he is 24 years old - and simply by age, that is a man, but it did not get into my mind. He is a man by so much more than mere years... I have it - I finally get it. Is it just mom's that don't to know that their kids have grown up? Anyway - now that I have it - it’s a really wonderful feeling. I still see my girls as 'my girls' - but they are women and one’s a mother too - very strange thought. But, one at a time! LOL. They can stay 'my girls' for a while longer.

Anyway - with this new doctor and my peace about him and Steven's ability to go down the cml road together, I have found a new dimension to life. So many thoughts are going through my mind and they will probably all come out jumbled - but here goes.

When the kids were growing up, I HAD to be around to raise them. I HAD to be alive. Then when the marriage fell apart and all the drama and trauma with it, I HAD to be around to make sure they were ok. Then, after a few years and the girls moved out - I still HAD to be around for them and Steven who was still living with us. Then Steven moved out - and bam - three weeks later, still adjusting to this new found freedom - I again HAD to be around to make sure he survived and got through this cancer.

This is not to say that I did not WANT to be alive at the same time that I HAD to be alive............. its just that the ‘had to’ part came first.

But. Now what? Now I know that no matter what, he will be ok. I have a young man dealing with cancer, not a kid anymore, and good or not good, we will deal with it. And my girls - they are fine - Lisa is a mom and coping very well and Joleen is far away and coping very well too. So - for the first time............... I DONT have to be alive! And something quite amazing has happened. Now I WANT to be alive!

I WANT to be alive to see how they turn out in 25 years time. I WANT to be alive to see how I turn out in 25 years time (really??). I WANT to be alive to meet up more often with the amazing people in my life, I WANT to be alive to really make a difference in something!. I want to be alive for so many reasons! I have found this bubbling of stuff - stuff that has come to the surface and overwhelmed me in these past few days in the freedom and thoughts they bring. I know that I can deal with whatever is out there waiting for me. I know it won’t all be wonderful or easy - but I know that I can deal with it.

For the first time it feels as if all three my kids are flying wide open and well and I can “Just Be” - for me!

So although I fully recognize the fact that my years of taking care of the kidshave now passed, I don’t feel unwanted or un-needed - I feel free and now, for the first time in as many years as I can remember - I WANT to live while recognizing the fact that it will all be ok even if I don’t. For so many years I was so afraid of what would happen to the kids if I was not around, particularly with their history of ex-parents, but that fear has gone! This does not mean that I am free of the kids – that never happens with a parent, a true parent. It does not mean that I don’t want to or won’t help the kids along in their lives or be with them and a big part of their lives – it simply means that I know they are wonderful, strong and amazing people who will cope whether I am here or not. What a simply wonderful feeling!

So - whatever happens, I know it will be ok. The thought that I don’t HAVE to stay alive, but WANT to stay alive is blowing me away..... It’s not that I did not want to live before - it was just that I knew I HAD to and did not think of whether I wanted to, kinda like being on autopilot. What a difference this "wanting to" makes. Maybe it changes nothing tangible but my inner thoughts and peace of mind and outlook on life - even that is good.

And with all these thoughts comes the next pcr test early next month. I find myself on a very different level coming up to this time again. I am ok. I am calm, my nails are even growing still and I swear my hair has stopped graying! Now I know that all this can change in less than a heartbeat, I am aware that it will only take one test result to take some of this peace and calm away. But today life is really good and I am strong and capable and able and really wanting to enjoy these good feelings.

One day at a time – that’s the only way to deal with this. For two long years, I tried to sort out the ‘what ifs’, tried to get them all into the right side of life and to make it all right. Now I see that no amount of plotting, planning, scheming or bargaining will help in any way other than add grey hairs and allow that stress hormone to pack on that extra tire around my hips! L So, for now, it’s back to life.

I have been so absolutely fortunate in finding some truly awesome friends along the way who make me laugh and make me cry, who make me see how truly fortunate I am, how fortunate Steven is, yes – even him. I have these people in my life who are there with no strings, no expectations. I read a lot about other young people with cml and try to stay away from the other more horrendous cancers just because it hurts to read about the mom’s that are out there, so much worse off than me, let alone their children. In one way I want to try to understand what goes on in Steven’s head regarding this cml, and in another way I just look at him and see that he is ok – and then I know I can stop reading. For now.

So with this new peace and stillness in me here’s wishing everyone the ‘one day at a time’ effect. It’s good.

And – I babysat on Thursday on McKenzie's first birthday, for a few hours…… here’s how it went! It was lovely.........

and one of my photos of life through a crystal ball - all upside down but beautiful :-)

Love and light.........

Thursday, March 06, 2008

Now is never too late

So its been two years since I watched Steven swallow again and again as we heard those awful words spoken out loud as a definate - "you have leukemia". This past week or ten days, so many memories and thoughts have come back from that time and at times some of the emotions have been as real as they were two years ago and I find my throat catching and eyes threatening to water up. But mostly I am surprised. I am surprised that a whole two years have passed and I am surprised that only two years have passed. And I am surprised that even with cancer in the family - we are all still in one piece, happy and healthy and more complete than we could have imagined possible and possibly more so had this not happened.

It's been a lifetime in so many ways. And again, I can only talk from my personal feelings as 'freaky mama'. Yes, two years ago Steven had just moved out of the house, Frank and I were sole residents at this address and planning a quick trip to the beach to catch some sunshine. We felt good that everything was going so well, so smoothly and life was definately a good thing to be doing. Yup, almost smug. And then the hand rocked the boat and life changed dramatically.

After two years, and bearing in mind that Steven is doing so incredibly well, I have to admit that my life is much richer, much deeper and filled with truely amazing people that I would never have known if this had not happened to Steven. Am I glad? No. A resounding no. And I would give it all back and undo the leukemia if I could. But we all know that no matter how big and fierce and scary I act at times, that's not within my abilities. And the thought skirts around my mind that if cml was gone, would there be something else? And if there were something else, would we be where we are today? Would we be able to be as well and happy and thankful as we all are right this very day? I think not.

So - am I thankful? Yes. I am incredibly thankful that despite my son, this incredible man, having cancer, I am happy and able to carry on with my life too. I am thankful for the many, many emails and phone calls I have had in support of both Steven and me and my family. I am thankful for the richness of (and in) my life, for the people, experiences and love. But most of all - MOST of all, I am incredibly thankful that Steven is doing so well on his Gleevec, that he looks good, feels good and is going right on with his life. I love seeing how he has grown, how he is dealing with this. I love hearing his dreams and wishes, plans and wants and I especially love when they are not tinged with cml in his mind!

And so, on the day of the second year since diagnosis we all breath easy, smile, wonder at the past years and look forward to the next 80! I am not sure that I like the term "cancerversary" and not even sure I like the word "anniversary" when relating to this, but how does one explain it? We cannot ignore the date, the day or the diagnosis. It's not really just a date either, but a week run-up, a week or 10 days of not knowing which was almost worse. But somehow we have to mark it's coming and going too. No cake this year, no celebration, just dinner together with a deep, deeeeep appreciation.

And maybe that's the way to mark the passing of another year of survival - to really just live life to the fullest, to do as Steven does - just move right on with life absorbing the good with the bad. To make that commitment again to look for the joy in every day and appreciate those that are in our lives right now. We never know how our lives are going to change in the next day, with the next phone call or even in the next minute. Now is never too late.

Survival is not just what the person who has the cancer or disease does, it's a joint project and also one that each of us around Steven has done. Firstly and obviously Steven survived - not only two years, but what must have been raging storms of emotions, the telling of friends, the adjusting to new things and feelings and fears, just to mention a few of the more surface things. And then - so did all of us around him too - Laura, me, Frank, his sisters, family and his friends. We all survived the horror of the diagnosis, the pain, the anguish and the adjustments. We all survived! And we are all stronger now too. What a thought.

I hope that in some way I can take the love and light, joy and happiness and relief and hope that I have been shown and given in these two years, and feed it back into the universe, into the general well-being of the world -somehow.

My world is a better place today. Two years ago I would never have dreamed being able to say that. One never knows, one just never knows.........

Steven has done an incredible job of teaching us all how to deal with his cancer. He has been the strongest example I know of just getting on with life despite collecting this lemon along the way. He has taught me so much these past two years, led me by his example and even laughed at me and my worry - this is a good thing. It's all so good and I am so incredibly fortunate to have this young man in my life. How could I possibly thank him enough for allowing me to be a part of this journey so that I can understand, work through it all and get to where I am right now on the worry-chart?

Steven, I love you more than you know - always will.

Love and light

Saturday, March 01, 2008


I took the photograph then borrowed a pixie to enjoy the limelight..............if you click on the picture you will see it better... I am playing again, so things must be right in my head. Good! :-)