I don't believe that I will ever not worry about this disease in Steven. I don't believe that I will ever become totally at ease, nor will I believe that there is no chance that it could all go bad..... But I am not going to waste the days, weeks, years we have on worry... I am not going to pull that cloud of worry over my head when I could rather enjoy the sunshine while its here.. If it rains, if Steven's cml wakes up and wants to create more horrible days and worries, well then we will deal with it. If it happens. But for now. Its not.
Everything seems to be going along really well. And, as I do in my job, which is fixing and building computers, I try always to acknowledge that I really don't have the power over much at all. I fix a computer and it *should* work well for a long time; I say that we *should or might* be able to finish the job in one day; I say that the antivirus program *should* pick up most of the viruses. I have learned not to be absolutely sure about something I have no control over.
Today I spoke to Lottie who is away from home during a drug trial for a new drug that sounds incredibly promising for cml-ers. She and her husband don't know when they will be home again - they have been away a month already.... She told me of a 12 year old at MD Anderson Hospital who now has AML for the third time! Yup - third time. Not sure whether she will be home for Christmas either. Then there is Tyler and Mandy who are going to be back and forth between hospital and home during the Christmas week. These are just three people that I can think of right now.... Three families that will not be putting up a Christmas tree with the peace we can because, well, they are not home to do so because of cancer, and stuff totally out of their control. There are thousands of families like these.... thousands....
So here's my challenge to you ........ put up your Christmas Tree with someone else in mind. Hang a good number of the baubles, pieces of tinsel, decorations and many light with the thought of someone who would give anything to be able to do just that. And then hang the rest with thankfulness that you can do exactly what you are doing.
And then when cleanup time comes, the time when the prettiness goes away and its time to 'get back to normal' and a new year, send a thought out there to those who can not do that..... to those who no longer have 'normal' in their lives. And be grateful that you can do that - because that means that you have at least some 'normal' in your life.
I remember so well when Steven was first diagnosed..... everything remotely normal disappeared. People spoke quietly around me, normal gripes and complaints were no longer shared with me, jokes were kept far away - oh I missed normal SO badly - life even smelled different! So, be 'normal' around someone who is having a rough time this Christmas.... I know its difficult to know what to do, how to act, what to say.... but just be you. It will help.
One of the sad things about cancer is that everything does change with a diagnosis - the world gets a different hue, taste and feel. The ground feels unstable and its easy to get lost. We are extremely lucky that Steven is doing well, that he is with us still. It could so easily have been so different. I could be in that horrible new world of moms who have lost their children. Two wonderful ladies that I know no longer have their sons to hug and nothing can make it right for them. Before Steven's diagnosis, I never really thought much about losing a child of mine, but the loss of both Adrian and Nick from the same disease that Steven has, has kept me in a mode of deep thankfulness, as well as a state of humbleness. And hope.
And with that in mind, I am going to post this link again...... the National CML Society. A bit about who they are : The National CML Society was created by and for patients and their families in order to provide a centralized hub of information for this rare form of leukemia.
All this really makes it clear that none of us are alone in this at all.....