Saturday, February 4, 2012

11/15/10 - 02/02/11: Misery of Mucusitis

 As difficult as this episode was, I wouldn't hesitate to go through
it again if it meant getting me into another remission.

By January 3, I was unable to swallow food or pills because it was too painful. I had the start of a raging case of mucusitis which was caused by the melphalan. It can burn the mucus membranes of your entire digestive system starting with the mouth. One of the doctors said it is like a sunburn that blisters and peels. Because I couldn’t eat or swallow pills, I had to go back into the hospital to be fed and medicated intravenously. I was absolutely miserable and in a lot of pain. They gave me a continuous drip of pain medicine and a personal pain control pump, but it wasn’t strong enough. They eventually upped the dosage three times before it started to ease the pain. I couldn’t talk so my husband bought me a white board to write on and that helped. Not only did this chemo drug burn my digestive system, it burned the palms of my hands from the inside out. They were so painful and red and eventually they peeled like a bad sunburn. It was easily the most miserable I have been in my life. I was in the hospital for 17 days and wasn’t able to go home until I could swallow pills and eat on my own. Eating and pill swallowing were major ordeals!

The last week I was in the hospital my husband, Brent, came down with a cold and was not allowed to visit and that was devastating to me.  I had been there nearly two weeks and it felt like I would never get out and the thought of him not being there each day was overwhelming.  He had been with me every day since this medical odyssey began at the end of 2009. However, my daughter, son and daughter-in-law visited me every day and I was thankful. Finally, on day 17 of my hospitalization, I was released and my daughter took me home to the apartment. She stayed with me and took excellent care of me for two days until Brent was well enough to come back to Seattle.

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