DAY +1329

Here it is, almost the end of 2015.  Another year of incredible wellness.  I continue to get checkups every three months.  The frequency of these checkups is due to receiving a haplo-allogenic (half match) bone marrow transplant in 2012.  Hopkins performed these transplants on a few hundred patients who they are following closely.  Since I am a part of that clinical trial, which began in 2011, I welcome the frequent monitoring.

I had cataract surgery performed on both eyes in September.  It was very much needed – it had been a very blurry couple of years.  I was told that all the chemo and medications I received would speed up cataract formation, and it certainly did.  The surgeries went well, and the world is clearer and brighter for the most part.  However, I still have problems with GVHD (graft vs. host disease) in both eyes.  When it flares up, my vision becomes blurry and I feel grittiness in my eyes.  I have steroid drops to use when this happens.  Most of the time they help, but not always.  I am hoping that something better will come along.  I am told my eyes aren’t “bad enough” for those Prose Lenses, which were developed a few years ago for people with severe eye issues.  They are expensive, about $10,000 per eye, but some insurance companies will cover the cost.  I know a BMT survivor who has the lenses now, and has experienced instant and total relief.  We’ll see what this coming year brings.  How bad is “bad enough”?  As an artist, I need to SEE — really well!

I still have flare ups of skin GVHD at times, mild rashes, but I have been able to manage that with steroid creams.  I have noticed that when I feel stressed and anxious the rashes appear, especially when I’m due for a doctor’s appointment and blood tests.  I try to remain as calm as possible day to day, but the anxiety sometimes wins out.  I’m also not sleeping as well as I should.  I resolve this coming year to try and do a better job of getting more rest and managing stress/anxiety.  I also resolve to get outside and walk!  Fresh air!

This is the fourth Christmas since my BMT!  The miracle of being here to celebrate is still mind-boggling to me.  There are actual whole days that pass when I don’t even think about the transplant anymore.  I never thought THAT would happen.  But there is that nagging little gremlin in the back of my mind telling me not to completely relax.  The fear that it could all go south in the blink of an eye.  I suspect all cancer survivors experience this.  I really have to get control of the anxiety this coming year, and have faith all is well.

I have been extremely fortunate medically.  There are some BMT survivors who have suffered from serious complications.  There are some wonderfully courageous people I’ve come to know on this journey, and I continue to send them my thoughts, prayers and positive vibes going forward.  I also thank family and friends who continue to be incredibly understanding and supportive of me.  I recently read in an NIH study that it can take up to five years for a BMT survivor to recover mentally from the procedure!  I can truly understand that.  We can feel very vulnerable at times, leading to anxiety and sometimes depression.  It’s good that we keep track of  ourselves mentally, and if we need extra help, to get it.

I know this post very closely resembles my last post, with a few exceptions.  But I wanted to make sure I  wished everyone a Happy and Healthy New Year.  Take care of yourselves and each other.