Goodbye Clincial Trial - Embracing Now

It has been a very long couple of months.  I’ve thought about writing and updating everyone on this blog but the fight has been challenging both physically and emotionally.  It was important to me to be in the right place mentally to share the experience.

The clinical trial proved to be very difficult.  The medication quickly took its toll on me.  I was vomiting frequently and diarrhea was a constant companion.  Despite my best efforts to eat regularly, take prescription medications to offset the symptoms – I was simply put - miserable.  Vomiting constantly and without warning has given me the badge of honor of ‘christening’ almost all the toilets in my house – I still have one to go.  Also – I have come up with a new eating plan which is basically…would you be alright throwing this up?  Meat is off the table…and recently…rye bread.  I typically love rye bread and Alan made me some toast on a rough morning.  Unfortunately – I lost the battle and it came back to visit.  Let’s just say when I closed my mouth and realized I was chewing on a rye seed…it went to the top of my ‘no’ list.  J The horrifying realization caused another onslaught of throwing up.  When I shared this whole experience with Alan - we had a bit of a chuckle over it. 

Despite this – my progress with my leg continued to improve and I moved past my cane and am able to walk with a minor limp.  It does get worse as the day goes on but still – it is nice to see the improvement.  

As Christmas came – my vomiting/diarrhea worsened.  I started to skip taking the clinical trial medications and the symptoms lessened.  I finally made the decision that I was done with taking these pills.  The Doctor was very excited about the documented life extension that this medication provided but for me – the extension of life without the balance of wellness was not worth it.  At my next appointment in early January – I officially withdrew from the study.  Since then, my wellness has been improving.  Diarrhea is completely gone – and the vomiting has become more intermittent.  I believe I can get that under control by figuring out my pain management methods.  My sciatic nerve causes me pain especially at night but my body cannot tolerate prescription pain killers very well – even in conjunction with anti-nausea medications.  So – Aleve and sleeping pills work better for now. 

I am happy to say that I’ve been able to more consistently put in hours at work.  It is nice to see everyone and have things be ‘normal’ in some capacities.  Every time I am there – I do want to jump in and start going like a mad woman but I have loving but straightforward peers/leader who explain the need to take it slow. 

Christmas was a lovely time with family.  Quiet and joyous…it was nice to have everyone in attendance and see the joy on the faces of my nieces and nephews.  My kids were doting and again took care of the vast majority of the holiday prep.  I have truly been blessed with some sensational kids. 

Emotionally – that is the journey that is most private and difficult to share.  Let’s say that when you feel lousy…you can start to inhabit some dark places.  My main focus is to think about the here and now…and the powerful memories I can make with loved ones.  My thoughts can quickly turn to what life will be like for them when I am gone and all the precious moments I will miss at least in my physical form.  The battle has been to fight back those thoughts and concentrate on the beauty of now.  The chatter of my niece.  The smile on the faces of my kids.  Quiet moments with my sweetheart.  Sharing laughter with friends.  Life is beautiful and precious…and I plan to eat it up with both hands.