Karen,

I go through the same scenarios with my two teenage sons. My 16 year old (on June 4 actually) is always chastising me because he doesn't see what the big deal is anymore now that I am cured. Every lump, every pain, every uneasy swallow is a constant reminder as a survivor that this is what we will deal with on a daily basis, hopefully with many days in between the stress and worrying. And yes, the reality of this disease slaps us in the face when our fellow OCF warriors share devistating news with us. It hurts just like it is our family because we all have become one large extended family of sorts.

I do not want to minimize what we all are going through but the caregiver has such a tough role, too. We have this disease by circumstance; they have this disease by choice in being by our side. All the care and treatment and the medical teams are pretty focused on us and the caregiver is just lurking in the shadows waiting for the next crisis. This dreaded disease has no boundaries. I am sorry you, your husband and all of us have to go through all this and I really can't imagine what it would be like without all of you. The only thing we don't get from each other is that big hug that all of us need so desparately today.

It sucks...but it is what it is. My heart is so heavy today but I want to be strong for all our brothers and sisters out there that need me. I know we all hurt today and every one of us would do whatever we could to make the pain subside.

May God comfort us all tonight and wrap his love around us and our families.

Ed