Thursday, March 06, 2014

8 years!

Its been a YEAR since I last wrote here?  Wow....

That's SO good in many ways - it means that there is not much to report regarding CML - and that is really really great.

It's now eight years since we first heard those terrifying words - Steven has leukemia!  I will never forget that day, the total terror, the numbness, forced smiles as well as nervous laughter mixed in, but mainly pure unadulterated fear.  I cannot imagine what it was like for him, but I know that it felt as if my life was over.  It was singularly the most frightening thing I have ever experienced.

I have watched as Steven has grown from the young man he was back then to the strong, confident and competent man he is today;  I have watched how Laura has been wonderful in supporting him and how they have taken this in their stride as the years tick on by..... it's been beautiful!

Eight years ago today, I could not think of eight minutes ahead, let alone eight years - how incredibly fortunate we all are to be able to look back and to also know that we can look forward without those feelings of what feels like a lifetime ago.

Steven and Laura carry on with life in a tremendously normal way that is wonderful to see.  Absorbing CML into their lives has gone smoothly and even though those PCR tests keep coming, CML is sort of way down the list of 'big things' to deal with.

The PCR tests have jumped up and down, between weak positive to 0.013 which seems to be the norm for Steven and which does not do much to my heart rate these days.  Each time I see those results, I utter a 'thank you' to the heavens and hope that next time is just as good, if not better.  So far so good.

So much has happened in this last year, that I have not had the time to fully concentrate on CML even though I am still so very aware that this is still a serious situation that needs watching.  Its wonderful to see Steven and not think of leukemia at the same time.... weeks go by with no thoughts of it.

Today I was thinking how different people respond to cancer. Some can get on with life, only paying it attention with those PCR appointments arrive while other's lives change to incorporate CML as a daily part of their lives in the form of fundraising and teaching and helping. (Some unfortunately don't have a choice as they deal with horrible side effects and non-responses to meds) I think that both ways are absolutely perfect and my never ending thanks go to those that do the latter - like Greg and everyone at the National CML Society and others that fundraise and keep the awareness of cancer in the in the headlines

I am really happy that Steven has chosen to put 'normal life' first and treat CML as a fact to deal with while just getting on with it.  It's good to see my 'kid' not involved with cancer all the time.  Is that selfish?  It's a thought that has been bouncing around my mind for quite a while now.

Here is the label from Steven's Gleevec..... its frightening just how much the cost of this medication has gone up in eight years.  When he started on it, it was just above $4K a month...

And so..... maybe it will be another year before I write here again.  I hope it is, which will again mean 'no news'!

Love and Light to you all - and hopes that your lives are all on a smooth road.  May we all stand strong and cast long shadows :)

Annie - Steven's mom

ps - if you are not a bone marrow donor - join now!  And donate blood too - its wonderful just how many will be helped by a blood donation, and what better thing to do with your life than to help someone else live!


Chuck said...

It's amazing how fast the time flies. It has been a little over 8 years for me as well. I am starting a new journey as well, as it has been 3 months off all TKI's. So far still PCRU. It is great to hear that Steven is doing so well.

Anonymous said...

Hi i am kristine, i am newly diagnosed with cml. i am only 21. I am very thankful that i've read your blog. It gives me hope that i can still have a normal life and someday get married and have a family. Thanks for sharing! :)