1,230 Days

1,230 Days...the number of days since Ed was diagnosed with stage iv colon cancer.  1,230 days that Dan and I will cherish.  1,230 days that we never hoped to have 1,230 days ago.

1,230 days later was a very difficult day.  Ed was experiencing severe pain when we arrived in the morning.  He refused his oral medications and did not want to be bathed or repositioned and instead asked for the doctor.  This was all certainly a first for Ed.  Dr. Berkenwald came in and offered Ed various options for pain relief.  We settled on upping his PCA pump and administering an additional dose.

Ed was pretty restless for the rest of the morning and early afternoon I called our hospice team and his hospice nurse stopped by shortly thereafter.  She confirmed the signs that I was already beginning to recognize which included that his kidneys have stopped functioning and he had more congestion and his breathing was labored.  After asking Dan if he wanted to be here when Ed passed, she recommended that he not go back to his apt/work since we were looking at 1-2 days tops.

She asked Ed about some adjustments to help with his comfort--one for his congestion and one for his restlessness.  It was decided to hold off on the medication for the congestion but they did give him Ativan (anti-anxiety) and that quieted him and he slept peacefully for the rest of the afternoon.

Late afternoon there was a change in Ed's nurse and Tara treated him for the rest of the day.  Ed had her earlier in the week and she was terrific.  She did come in and talk to me and Dan.  She has previous experience as a hospice nurse and so was very helpful in explaining what we were seeing/experiencing.  Not only did she treat Ed kindly, but also me and Dan.

Dan and I spent a lot of time holding Ed's hands and talking to him even though he could not respond.  It was a tough decision regarding whether to stay with him for the night or to go home.  Since Ed has been pretty insistent on us going home every night since he was first admitted, we decided to come home.

My greatest fear is that Ed will pass this evening after we left.  But we realize that this may also be what Ed wants.  So we left and we exchanged direct phone numbers with Ed's evening nurse Tim.  Tim was also terrific in terms of helping us assess where Ed was and helping us to decide whether to stay or leave.  Both Tara and Tim helped us understand that this was a personal decision, no right or wrong, but something that we just needed to do together.

Ed is not talking and is quite out of it (and Tara warned us that he may remain this way).  I was able to let him know Dan was staying home (not going back to work right now) and of course Ed's final words had to do with making sure Dan called his boss.

I am hoping that Ed makes it through the night, but if he doesn't, I am comforted that Dan and I said what we needed/wanted to say over the past two days and we have no regrets.  I also know if he passes this evening, it is because that is what Ed wants.

Thank you all for your continued support and prayers.  May Ed rest in peace.