Tuesday, April 08, 2014

The End of the Story

My younger sister, Mary Claire Chesnutt Luce died on Wednesday, March 26, 2014 at the age of 55 after a valiant fight against urethral cancer. While taking care of her for the last week and half of her life, I wrote about the experience of caring for her in hospice. I will be posting what I wrote over the next few weeks as part of a small series about the experience.  It is part of my mourning process and I hope those of you who read my blog will understand why I need to tell this story. 

Sunday, March 16, 2014
At some point in time, all of our stories will come to an end. This week my siblings and I began watching our beloved sister Mary Claire’s story reach that final chapter. After a long, brave struggle, she has exhausted her treatment options at MD Anderson (MDA) and we have placed her in hospice care.

Yesterday afternoon, I walked out of MDA for what will almost certainly be the last time and followed Mary Claire and her husband Mike down to Rockport, Texas where we have installed her in a room at our sister Julia’s house. Julia’s house is a beautiful place to be and once we determined that when Mary Claire entered hospice, she would no longer be a patient at MDA, we saw no reason for her to stay in Houston. So, we have brought her here. Where she can look out on the water and see the sky. And be surrounded by all of us who love her.

For me this is about finishing the journey I started with MC over two years ago in December of 2011, when at our family Christmas gathering, she pulled me aside and told me about a lump she had found near her collarbone over Thanksgiving. At the time, she (and I) thought that the most likely diagnosis was going to be lymphoma. Not great, but treatable. Instead, the diagnosis was Stage IV urethral cancer, which had spread to her lymph nodes and various other spots. Urethral cancer and other cancers of the bladder are not easily treated, especially once they have spread. There are limited drug and drug combinations that will reduce the tumors and the chances of her going into a full remission were slim to none. In fact, her original prognosis was 5 to 6 months without treatment and 15 to 18 with treatment. 

We were lucky, if you can call having her with us for just over two years instead of 18 months lucky. We had an additional Christmas with her that we did not expect to have. And I was blessed with truly getting to know this sister of mine. Taking care of her has been a joy and a privilege.

Today, Mary Claire has slept quite a lot, a reaction from the very long day we had yesterday between arranging the discharge from the hospital, the 3-hour drive to Rockport, and the meeting with the hospice team when she arrived. A meeting where she signed a do not
resuscitate (DNR) order. A document that hospice services require. One can gloss over the facts a little bit: about a third of patients who go into hospice care will leave hospice care to continue treatment, but the reality is if you go into hospice care, you are acknowledging that you most likely will die within six months or sooner.

One of the most emotionally tearing facets of this is that her husband Mike still thinks that Mary Claire will somehow overcome all that is now wrong and be able to leave hospice care and resume treatment at M.D. Anderson. He cannot let her go. And while we are fairly certain that Mary Claire does know that this is the end it hasn’t been clearly said yet. My sister Julia took Mike aside today and told him, “Mike, you have to know this is it.” She urged him to change his plans to go home for a few days to take care of things there so that he would not miss out on any of the good days Mary Claire still has, but he went anyway.

We have called our brother Clark to urge him to come down to see her sooner rather than later. Our sister Jane, who was with us in Houston at MDA this past week, is back home and trying to decide when she will return to Texas. Complicating matters for her is that she has come down with a nasty cold. Does she come sooner and potentially risk shortening Mary Claire's life by exposing her to an infection? Or does she wait and risk possibly never having Mary Claire recognize her again? And we have yet to figure out what to tell our 92-year-old mother. She lives here in Rockport and I have yet to see her. Which is quite strange for me as before this, I've stayed at my Julia's house just once before. I am the one who always stays with Mom when I come down here. Quite honestly, I’m more worried about how telling our mother will affect Julia. I worry right now about Julia as much as I worry about Mary Claire. And I need to figure out how to take care of all these people (my mother syndrome) and work remotely so I can spend the maximum amount of time with Mary Claire as her life draws to an end. At this point, it could be a two weeks, a month, two months or more. We simply do not know.

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