A Moment of Grace

Let's face it. 2014 was, for the most part, just awful for me. Given that I've cried enough, I'm not going to subject you to a look back to all that. I am going to list a few things I'm grateful for over the past year.

I'm thinner. Much thinner. Not as thin as I'd hoped I'd be by now, but that's okay. Especially as after I lost the weight, I kept it off. I restarted the diet this week and have a new goal to reach in 2015. I'm ready to get the rest of the weight off.

I'm three weeks away from being released from this boot and being allowed to drive again. I can't wait. But I must thank all those who helped me through this. From Larry, who has dealt not only with feeding and transporting me, to Michael, Sarah, Sara, and Emily who jumped in and helped with a wide array of tasks when I was first unable to do anything at the house, to our friends and family who brought us food, to the students at the school where I work who simply opened doors for me to wheel or hobble through.

The people at work. The events of this year have meant that I've had to work remotely on occasion and they were supportive through it all. Being able to work from various locales and with adjusted schedules helped me keep a bit of much needed normalcy in my life throughout everything that happened. 

Our redone space in the house. Over the summer, I redid our entry hall, living and dining room completely. It was a project I had in my head for over a year and it's done now, aside from finding the perfect dining table and chairs. The finishing touch for me though are the new light fixtures which my sister Jane gave me for Christmas. I still can't believe she sent me my dream lighting for these rooms. It's beyond perfect for these rooms. And they wouldn't be sparkling in these rooms if Larry and my son Michael hadn't spent quite a bit of time installing them. Working on these rooms was therapy for me following the death of my sister MC and now that they are done, being in them continues to sooth me, giving me a peaceful, beautiful space to sit and read or sew or just think.

My granddaughters. Luci and Ellen are pure love. I hold them and cannot believe how lucky I am to have them in my life. 

My husband. It's been a tough year and I am not an easy person to live with normally, much less when I am deeply unhappy as I have been for too long. 

My sisters. All of them. Mary Claire taught me so much. And being part of a team with Julia and Jane, heartbreaking as our appointed task was, was life altering. I've always loved them. But that love is deepened now by our shared experience.

My children. Who continue to love me. I hope they know how much I love them.

A Three Month Sentence

More reason to hate 2014. Last Monday I went for the two week follow up visit with my surgeon. I was foolishly optimistic. I went in thinking that I could positive attitude myself through this. If I had a positive attitude, I could pull it all together and get my life back as early as Thanksgiving week. 

What a pathetic fool I am. 

The good news is, the stitches came out and the xrays look great. The bad news is the truth told to me by the surgeon. Because I was told to not put any weight on the damn leg, I didn't move anything within the splint for those two weeks because I was afraid of messing something up. And as a result, the muscles/tendons/whatever in my ankle have tightened up and need help. As in 'aggressive' physical therapy three times a week for six weeks. Which I can't even start for another week and a half! And which I will have to take time off from work to do as the physical therapy facility's last appointment of the day is at 4:00 pm. I also won't be seeing my surgeon again for six weeks. During which time I am not to put any weight on the injured leg. At all. And then to add insult to my injury, I asked when I will be able to drive again, thinking 'the minute I can put weight on this foot again'. And I was wrong again. Best case scenario is three months and that's only if at three months I can put my full weight on the leg and have full flexibility in the leg/ankle will he clear me to drive. Three months during which I cannot drive myself anywhere in my mini cooper. Three months when I have to rely on someone (mainly my husband who does have a job of his own) to drive me literally everywhere. Work. Physical therapy. Doctor appointments. Stores. You name it. 

As I sat in the exam room taking it all in, I started to look around for something to hurl at the wall and break. Because I was so angry and frustrated. Luckily, there was nothing within reach. But I'm still angry and frustrated. I am used to being independent and doing everything for myself. I'm used to doing things for others, not having things done for me. And right now, there is so much I can't do. And it's not that I am not beyond grateful to everyone who has been helping me. I am beyond grateful. But I am having a very, very hard time getting past the frustration of being helpless. And afraid. Afraid of getting in a rush and falling again and making it worse. Afraid it will take even longer for me to get my life back.

An Expedition to Deepest, Darkest Borneo

Or My Return to Work with a Broken Leg

After being discharged from the hospital late on Tuesday night last week, I spent Wednesday and Thursday adjusting to being home and figuring out the basics of having a broken leg in this house. Family and neighbors fed us. Essential changes were made to make things a little easier for me, and I started to build up my strength. On Tuesday night I announced my goal of being at work by that Friday. 

My husband refrained from asking, "Are you insane??" and did not make plans to spike my tea on Friday morning w/ an extra dose of the codeine based pain killer I was given. Instead he was a good sport and listened to my reasons for wanting to jump back in so soon. My reasons were simple and, I think, valid. On Friday, a meeting was scheduled with the marketing firm that has been examining and exploring the school where I work with the goal of providing us w/ new creative for our marketing efforts. This process has been a months long effort and Friday was the day the committee I am on was to see the design options they had created after all of this research, observation and input. As I will be one of those working with these new designs, I naturally wanted to be there for the unveiling. 

Now, our technology department could have arranged for me to attend the meeting remotely. And normally, I'm the first to accept a technology solution to a problem, any problem. But in this case, I told my husband, I really wanted to be in the room to see it unfold and to actually witness the reactions of my coworkers. And to be a part of the moment. And he got it.

So, we made our preparations. Thursday night, he became my shampooist, wheeling me into the kitchen and washing my hair as I stood on my good leg with my head bent over the sink. Then he wheeled me into position in front of our closet mirror so I could dry my hair. 

Friday morning arrived. We had planned that we would shoot to arrive at the school a little before 9:45, which wold give us time to get me in, get him set up in my office for the day and get me into the conference room in time for the meeting. To do that, we'd need to be in the car by 9:15. So, we get up and he fixed me my tea and English muffin. I ate and took my meds and gave myself the shot I have to take as a result of this little debacle. We did a little dance getting ready. Normally, I leave before he has to get into the shower. This day was more than a bit different. This was the first time I'd worn makeup since the accident, so everything had to be brought to me and there was no room on my nightstand due to all the meds I was taking. Also, my hair was looking significantly worse since I had dried it the night before. So, he had to set up my flat iron and bring the wheelchair so I could see what I was doing in the closet mirror. Once we were finally both dressed and ready, it was time for my first trip out to the car since coming home. We gathered everything up we thought we might need. Pillows to elevate my leg in the back seat of the car. My laptop case. My purse. My meds for the day. A shawl to throw over my legs while sitting in the wheelchair in my skirt. His backpack with his computer and other essentials to work. My walker, in case I needed it instead of the wheelchair to get somewhere at work. We really didn't know what I would need to get around best. 

We piled everything on top of my lap and on the side of my seat except the walker and he wheeled me into our entry hall, then went to back the car down the driveway to the sidewalk. Once back in the house, he got me out, not w/ a ramp but with what I considered to be a rather dubious assortment of random lumber from the garage arranged to 'step down' the wheelchair to the pavement from the threshold. My verdict was that while it was a slight improvement, I still wanted a ramp. But he got me to the car and I managed to get into the back seat, hoist myself across the seat to the other side and  fastened in and my leg up on pillows while he fit the walker and wheelchair into the trunk. 

Thirty minutes later we pulled into the gate at the school. After a bit of business w/ the security guards, including being told to put on my badge (it's still in my Mini Cooper), we parked and began the process of extracting me from the car and unloading the wheelchair w/ me and my stuff.

We finally got me and my stuff into the building and made our way to my office. After a few of the welcome back/what happened to you conversations, Larry settled me in the conference room for the meeting and headed off to do his own work in my office. 

I am happy to say that I was right about going in for this meeting. It was so much better being there in person to see the work and the reactions of everyone. It wasn't easy, but as first days back to work after an injury like this go, it wasn't bad. I will report that we did not need the walker, but did need the pillows. I texted Larry a little after 2 hours in and asked him to bring me one to put under my elevated leg. He handled it smoothly, handing the pillow in through the door and was accomplished, I hope, with a minimum of fuss. After the meeting ended around 2 pm, I hung around to help to get some information to some of the others that they needed. Then we loaded up me in the wheelchair and headed out for home. 

Since then, we have streamlined the process. So, it's not nearly as big a deal though it's still not exactly a breeze. It helps that I am regaining a lot of strength and stamina. I also admit that I probably pushed it on that Friday going back so soon, only six days after breaking my leg and having surgery. But I wouldn't have missed being in that room for that meeting. 

An Unexpected Detour

One false step. Just one false step. And this is me right now.

Eight days ago, I was at a friend's house for a lovely evening filled with fabulous food, dear friends, and a lot of fun just sitting around talking to each other. Then, as I was headed out to our car, I stepped out of their gate and missed a step.

Ending up on the ground in a heap with a right leg that was screaming with pain. As I seemed overall okay with no visible bruises, just in a bit of shock from the fall, my husband began to urge me to try to get up. So, I finally raised myself up on my hands and in doing so caught a good look at my lower right leg. "It's broken," I said. And everyone concurred when they looked at it.

So, a long night followed which involved a ride in an ambulance to the Houston Med Center, hours in the ER in a treatment room waiting to be treated, including having two level one trauma cases right next to me on the other side of a screen in the treatment room (one made it, one didn't to my sorrow), admittance to the hospital in the wee hours of the morning, followed by surgery on my leg. In the days since, I've had evil physical therapists (who had my welfare at heart) trying to get me to hop up on a three inch tall platform using my walker and doing it without touching my broken leg to the ground. (I flatly refused to jump, finally telling them that we would get a ramp for the front door threshold.) 

And now, about a week and a half later, I'm figuring this out somewhat. It has not been easy. The timing of this little accident has not been optimal (when is it?) and I have quite a bit of guilt over some things that I have not been able to do as a result of being out of commission for several days. I have another 5 to 7 weeks approximately to go. And even once I'm okayed to walk again, will almost certainly have to have physical therapy. But I'll cope. We'll cope actually, as this is really a family effort and also, to a certain extent, an effort that involves my friends and co-workers as well. For which I am profoundly grateful. 

Forty Years Later...

Forty years ago, in 1974, there was an extremely active movement in the United States to get the Equal Rights Amendment ratified so that it would become the law of the land. That "Equality of rights under the law shall not be denied or abridged by the United States or by any state on account of sex." There was a deadline looming for ratification by the states of this amendment and though I was just in high school, I was a fervent supporter of the effort. And I remember an argument I got into on the subject of equal pay for equal work with the guy who was my boyfriend back then.

Forty years later, the Equal Rights Amendment still has not become the law of the land. Despite numerous efforts, gender equality in the United States does not exist. It doesn't exist anywhere in the world. 

Forty years later there are still people, like my ex boyfriend, who believe that women should not be given equal pay for equal work. (By the way, he still should be thankful that I opted to just order him out of the house rather than sew his mouth shut after he voiced that opinion. I was at Mom's sewing machine at the time and was tempted beyond measure to just take care of his idiocy with a few stitches.)

Earlier this week, the UN launched an new campaign called He For She. It's aimed at gaining gender equality throughout the world for once and for all. Because that's really what equal rights is all about. It's not just about women having the same rights as men. It's about everyone having the same rights. It's about men being able to do what they need to do for their families, for their children, without being considered 'unmanly'. It is about joining together and finally, finally, not discriminating against anyone because they are male or female. To have the same rights no matter if you are male or female. We must change the stereotypes that we define men and women by and allow each man and woman to be equal under the law. Equal access to family leave. Equal access to pay. Equal in every way.

Earlier this week, I shared a link to a video of Emma Watson making an impassioned plea at the UN for this initiative to my facebook page. Looking at my recent posts, photos of a carrot cake I baked received 15 more 'likes' than my post about this critical issue. Am I annoyed? Hell yes. This is literally a life and death issue for women around the world. Women and young girls are actively being attacked for trying to get an education in certain areas of the world. What is wrong with us when a damn cake gets more attention than an issue of human rights? We are talking about the right to vote. The right to be paid a fair and living wage. The right to an education. The right to be viewed as a human being who has value and to not have that value denigrated because of what sex you just happen to be.

Yes, I'm sure that those of you who are conservative and religious tend to think 'equal rights = feminism = abortion rights.' And you are so wrong if you think that is what this campaign is about. Because it is not. It is about treating EVERYONE with respect no matter if they are male or female and giving everyone the right to make decisions about their lives. So, I'm asking that you go to the website for this initiative and make a commitment to support this effort. Educate yourself about what this campaign is actually about. Educate yourself about the truth of what women are subjected to in terms of acts of violence against women, the lack of educational opportunities for women, the gap in pay for women and all the other issues this initiative is about. 

It is time to stop the war of the sexes and create a world where our sons and daughters will treat each other with respect. No matter where they live. This is the world I want for my son, my daughters, my daughter-in-law, and my grandchildren. Give it to them and to your children and grandchildren. Give it to the world.

Here's the link: http://www.heforshe.org/

Here I go again…

Note: Yes, I’m sounding off again. If you are a conservative Christian who still thinks our current president is a secret Muslim and you vote based on whom you think is the most Christian choice, then you probably won’t like what I’m saying here. On the other hand, that’s exactly why I think you need to read this today. So no alternative websites offered to you today. Just keep reading. I can pretty much guarantee that God wants you to know this. 

I have finally reached my breaking point with posts on social media about how we need a president who believes in God in the White House, or about the 'need' to bring back God/Christian values/Jesus to America. All the while extolling the joy that will come of living in a country that has freedom of religion as long as that religion is nominally Christian.

Enough people. Let’s look at a couple of facts:

• Adolf Hitler based his genocide aimed at the Jews on his Christian (actually Catholic) upbringing and education. One article I read tonight on this said that the German Social Christian movement, which influenced Hitler’s beliefs strongly resembles the Christian Right movement in America (http://www.nobeliefs.com/hitler.htm). So, this man, raised as a Catholic, who wanted to be a priest, committed one of the most heinous acts of genocide in history aided and abetted by the Christians of his country. Who joined in all in the name of religion.
• America may have been founded on Christian values, but by virtue of the fact that our constitution does guarantee freedom of religion, that means in actuality America really is not a country of any specific religious belief. Or it should not be by the law of the land. 
• Fanatics exist in virtually every religion out there. Evil exists. It is not exclusive to any one religion. In every religion, including Christianity, there are those who will turn the teachings of that religion to their own evil purposes. Christianity does not hold the franchise on virtue and goodness. Neither does any other religion. 

Going on from there, a few personal observations:

• While I am myself a Catholic, I respect all faiths and prefer to not stereotype those of different beliefs based on the lunatic fringe element of their faith. And there are lunatic fringe elements in every single faith that exists.
• I also firmly believe that those who feel God will reward them with the joys of heaven for killing others in His Name have a big, hot surprise awaiting them. Since I was taught in my religion classes that the fifth commandment prohibition against taking life also covers actively (or passively) hating another human being, hating any one simply because they are a Jew, Muslim, Catholic, Atheist, Southern Baptist or what have you is therefore a mortal sin.

So, have you figured out where I’m going with this yet or do I have to spell it out for you?  Just in case…here’s the deal:

As I see it, posting anything or saying anything that implies in any way shape or form that any religion or belief system is the ‘right’ religion or belief and that other religions or beliefs are lesser or wrong and that their believers should be disenfranchised or eliminated from the face of the earth is an act of hatred, and therefore a mortal sin. If you are guilty of this, stop right now and sin no more. Then, and only then, will the world (and America) be a better place.

Disclaimer: No, I’m not perfect or claiming to be perfect. I’m actually quite a bit less than perfect. And I freely admit it. But I do have a fairly well developed worldview of good and evil. And right now I’m seeing way too much evil in how people are using religions of all types to justify hatred on a global scale. And that worries me greatly. Hence this: my version of a wake-up call.

Five Months Later

Today is my sister Mary Claire’s birthday. She would have been 56 years old today.

I wish beyond all things that she was here, so that I could bake her a cake like I did last year and celebrate with her. I would give anything to see her sitting on my couch in the den and holding her newest great niece, Ellen.

But she is not here. Instead I have spent the last five months mourning my little sister and coming to grips with everything that has happened since she told me about the lump near her collarbone.

I miss her every single day. I think about her every single day.

I have second-guessed every single decision we made about her treatment. And come to the conclusion again and again that we did do everything we could.

And I have relived the week and half while we cared for her in hospice over and over.

Ultimately, I have had to make my peace with not only what we did, but with what how it all ended.

This experience has changed me in ways I never expected. I am no stranger to losing those I love to death. I watched my father die in front of me when I was just seven years old. I lost five relatives between the ages of six and fifteen. And because of the experience of watching my father die suddenly of a heart attack, I developed a deep-seated fear of death that has haunted me my entire life. Until now.

Watching Mary Claire fight the inevitable those last weeks changed my perspective forever. She fought so hard for every moment, even though at the end the moments she was fighting for were moments where she was incapable of truly living. When I think back over what happened, the only thing I would change is that I would no longer deny the truth of what was happening to her.

By this, I do not mean that I would not have fought for her as hard as I did over those two years after we got her into M.D. Anderson. I would. Absolutely. But once we had no further options, I wish beyond everything that I had had the courage that my sisters Julia and Jane had to face the truth and the courage they had to tell Mary Claire the truth about what was going to happen. And if I am ever in Mary Claire’s situation, I hope that I have Julia and Jane there to tell me the truth. I promise I will believe you two.

I love you forever Mary Claire.

And I love you forever Julia and Jane.

Goodbye

The eleventh post in my series on my sister, Mary Claire.

Wednesday, March 26, 2014
At 9:30 tonight, my little sister, Mary Claire Chesnutt Luce, died. 

Only memories remain. Along with anger. Sadness. And relief. 

A Prayer for the Dying.

The tenth installment in my series on taking care of Mary Claire while she was in hospice care. 

Tuesday, March 25, 2014

Another day and Mary Claire still hangs on to life.

She has not eaten anything since last Thursday night.

For the past three days, the only thing she has taken by mouth is liquid morphine and an anti-anxiety med which we dissolve in the morphine.

Watching my beloved sister die a fraction of an inch at a time has been a nightmare.

When this all started, my only goal was to save my sister. Having now faced the reality that there will be no miracle for her, no cure for her, no way for her to live a full and loving life, I only want her to go and to be at peace. It is the most painful realization I have ever had to deal with. But it is the truth.

Every Day

The ninth installment in my series about my sister Mary Claire.

Monday, March 24, 2014
The first thing we do in the morning, when Jane, Julia and I wake up, is head to MC’s room to see how the night went and if there were any changes. At this point, there really aren't any changes and the few changes we see are very subtle.

Mary Claire is still hanging on to life. The hospice people say this could be because she is waiting for someone. Our mom perhaps, since everyone else has already been here. But we cannot bring Mom in to see MC with the way that MC is now. Perhaps she is simply scared to die. We don’t know. What we do know is that it hurts to see her this way. Even Mike, who we thought would never feel this way, seems to have reached that point.

And so we wait. Julia has all the funeral arrangements made. She’s picked out a plot at the local cemetery in Rockport and bought it for Mary Claire. She’s talked to the funeral home. She’s also made arrangements with a local restaurant that was a favorite of MC and Mike for a reception after the funeral Mass. Jane is writing her obituary. I am picking out the music and I have my children working on picking out the readings for the funeral Mass.

Jane and I have our system down now. Since we are giving Mary Claire the maximum dose of morphine every hour now, we are taking alternate days to be in charge of giving her medicine. Which is essential, as I’ve discovered it really is difficult emotionally giving her this much morphine every hour. One side fact: when we open a new bottle of morphine, we tint it with blue food coloring so that we can tell if the dose begins to run out of her mouth when we give it to her.

A Cry for Help

The eighth installment in my series about taking care of my sister Mary Claire in hospice.

Sunday, March 23, 2014

Jane and I were woken up at about 4:00-4:30 this morning by Connie, the night nurse. MC was calling for me and refusing to let Connie give her the liquid morphine. We immediately went to her and managed to persuade MC to take the morphine. But she kept saying “Help me. Help me.” And it broke my heart because I didn’t know what to do. All I know to do is to give her medicine to control the pain. And I felt that I was failing her. So, I finally just held her and told her she could go. That it would be all right. That I would be okay. And we would take care of Mom. And that Mike would be okay. And that everybody would be okay. 

I told her to go. That Daddy would be waiting for her. And it would be okay. And at some point, she calmed down and started saying, “Okay.” Over and over.

I stayed with her until morning. My sweet little sister, I hope I am right. That it will be okay.

She would have loved this...

Note: Fair warning to my conservative friends/readers. Yes, I'm going to say things that will potentially upset you. So, if you really can't stand me using my freedom of speech, go somewhere else today. I recommend Molly Wizenberg's blog Orangette. No politics there: Just joy in the creating of good food that feeds her family and her friends. On the other hand, if you can stand just a little bit of political commentary (really there won't be much) stick around and then go read Molly's wonderful words. Because this is really not so much about slamming Texas' Republican governor as it is about someone I loved.

On Friday a federal prosecutor in Austin indicted Texas Governor Rick Perry on two felony counts of abuse of power. Today he showed up at the Travis County courthouse to turn himself in and have his mug shot taken. I'm not going to get into whether the charges against Perry are baseless or natter on about how I certainly hope they aren't baseless. 

No. What struck me today was how happy my best friend Sara would have been over this turn of events. She would have been ecstatic. And we would have been emailing each other about it and speculating hopefully about Perry's hope of another presidential run being done in by this indictment. 

Sara was the real deal when it came to being a liberal Democrat, becoming more and more zealous as the years went by. The standard expectation being that most of us are fervid liberals when we are young, turning more conservative with the passing years. Sara was pretty much the opposite of that. But then she never did do anything that was expected of her. 

Today I would have shared with her the fact that my daughter, her namesake, took a afternoon break to walk down to the courthouse and watch Perry make his 'walk of shame' in to turn himself in. I would have shared the video and photo my daughter Sara shot. And Sara Gray would have loved it all. She would have relaxed a tiny bit because she saw hope for Texas in this turn of events.

Instead, I'm hoping that she's seeing this now and smiling over the fact that Rick Perry now has a mug shot and is racking up some big lawyer bills. And that he is maybe, just maybe, losing some sleep at night over this. 

It was a good day in Texas today Sara. I wish you were here.

An Act of Faith

The seventh installment in my continuing series on taking care of my sister Mary Claire while she was dying. 

Saturday, March 22, 2014

One thing I’ve found out this week is that if I’m alone, I break down. And I can’t break down. Even though Mary Claire is now not as aware as she was, I need to show her that I’m okay. So, I have to stay strong and not be walking around with red eyes from crying.

This morning, Fr. Rey came and administered the sacrament of Extreme Unction. Also known as the anointing of the sick or Last Rites. When he arrived, I pretty much read him the riot act. As in, “We need to do this, but I do not want MC to be upset by it.” Because I know she is afraid. Hell, I’m afraid. She is dying. And there is nothing I can do to stop it.

She did become upset. But then, amazingly she became calm at the end.  I’ve heard of this and this is not the first time I’ve seen this sacrament administered. But I was surprised by it’s effect on her. 

I’m so tired. But I need to see this through. I need to see her through this.

Taking to Her Bed

The sixth installment in my series about taking care of my sister Mary Claire in hospice.

Friday, March 21, 2014

Mary Claire is now unable to get out of bed. Little did I know when I put her to bed last night that we had seen the last day she would be mobile. The hospice nurse told us today that we should not move her now. She’s not capable of walking. She’s also having difficulty swallowing her pills. After trying mixing the crushed pills in grape jelly and that not working as well as I had hoped, I tried chocolate whipped cream. Success! She loved it. The only caution is that you simply cannot lick any that accidentally gets on your fingers. I almost did that automatically (I love chocolate), but stopped myself just in time.

Today I contacted our extended family and a few family friends to let them know the state of affairs here after a ‘friend’ of MC’s went on Facebook and announced that she only had two weeks to live. I was not happy when I woke up this morning and saw that post. But Julia immediately reached out to someone she knows who promptly dealt with the issue. Gratefully, MC is now past the point where she can use her phone to check Facebook. We have removed the iPhone from her room and have with us though just in case.

Jane arrived early this evening. Though MC had asked me today when she was coming, MC had forgotten Jane was coming until Jane went into her room. Which led to a funny Chesnutt sister moment: Jane was explaining to Mary Claire that she would have been here sooner, but that she had been sick with a cold and fever and knew that Julia wouldn’t let her in the door while she was sick. A long pause, then MC said, “Bitch.” And yes. We loved it.

It is a relief having Jane here. I had been worried about her getting here in time. And together the three of us will see MC and each other through this. Originally my plan had been to go home once Jane got here and return in a week. But it is very clear that I cannot go. Both for Mary Claire’s sake and for mine.

How Do You Say Goodbye?

The fifth installment in my series on taking care of Mary Claire in hospice earlier this year. 

Thursday, March 20, 2014
Mary Claire continues to weaken. We can all see it. She’s determined to do things on her own, but this morning, when I fixed her breakfast (chocolate milk and malt o’ meal) she couldn’t feed herself. She was just too shaky. She got frustrated and wouldn’t eat any more. Absolutely refused to let me help her. We are worried because she doesn’t realize that she can’t do things by herself anymore and very concerned that she will wheel herself too close to the stairs or try to stand up by herself and fall. So, we kept a close eye on her. Much to her annoyance, I’m sure. She also got upset when Julia helped her put her makeup on. It hurts MC to see her face in the mirror, which is so thin, and to see the swelling she has in her lower body. She can’t move by herself and she’s not herself. And all she wants is to be ‘normal’ again.

Today really started the goodbyes. Family is beginning to come in. Clark came in this morning early and when MC saw him, she called his name and just clung to him when he hugged her. She was so happy he was here. My daughter Emily came in for a quick overnight trip, and a few friends stopped by. Mom was also told today about what is happening. She is stunned and heartbroken. I finally saw her this evening. Julia called me to come join her at a restaurant, where she had taken Mom and our friends from home to get me out of the house. Amid the laughter and talk, much about old times, Mom suddenly became quiet and teary. It’s a shock, because we tried to protect Mom from the worst of this. And I have no idea if that was the right or wrong thing to do. 

After everyone else had gone, Julia and I stayed. And talked. And cried. And on the topic of the right or wrong things to do, we agreed that no matter with what has happened so far and with what happens in the next few days, there will be no second guessing, no guilt, no recriminations. And we told Clark that when he and his wife came and joined us. This loss is going to tear us apart in so many ways. We cannot tear each other apart during or afterwards. 

One bright spot in this day. The weather finally was just warm enough with no wind to allow MC to sit outside on the deck. We got her out there and just sat and visited while music played on an iPad. It wasn’t long, but I’m so happy that we had that moment with MC.

The low spot: When I was getting MC ready for bed, much earlier than her usual time at her request, she asked me, “Why can’t I remember anything?” And my heart broke again.

After a brief break, I'm continuing the posts I wrote while taking care of my late sister Mary Claire in hospice. This is the fourth installment.

Wednesday, March 19, 2014
Today we made memories Mary Claire won’t be here to remember.  Mary Claire’s friend Sharon showed up at 11:00 am today with her arms full of crafting supplies, followed by my niece Ashley with more supplies. We dumped it all on the kitchen table and proceeded to have a major decoupage party, using scrapbook paper, mod podge, and paint. Mary Claire, Ashley and Sharon worked on birdhouses and I opted to paint and decoupage a clay pot. It was a major success and made MC so happy.

So that’s what I am going to say about today. Mary Claire was happy because we had a craft party. And I will be here to remember. As will Sharon. And Mike. We even got MC out for a while on the deck. It was a bit chilly, but it was such a beautiful day. We wheeled her outside and Ashley had music playing on her iPad.And Mary Claire was happy. She had Mike with her. And she had her best friend from childhood with her. 

Figuring out the unknown…

Tuesday, March 18, 2014
Last night I found myself looking up end stage metastatic urothelial bladder cancer online. There is not a whole lot of information available on what happens when a patient goes home to die, but what is available, fits with what we are seeing with Mary Claire. Her legs are swollen with the lymphedema and her abdomen is experiencing swelling as well. There is some blood in her urine. And she’s becoming more confused. At one point yesterday, she noticed the scars on one knee that are from when she had surgery back when I was in college. She asked what they were and I told her. Then she said, the surgery wasn’t on that knee, it was on the other knee. She is also sleeping more. I am hoping that eventually she will just drift off to sleep and simply go peacefully from there.

It is so hard to know what to do. I admit I have a tendency to want to shield her from the reality of this end that is coming. Despite being the ‘official’ Catholic among the siblings, I have a harder time putting my faith in a glorious afterlife. Maybe it’s the residual effects of being taught by a nun who believed in scaring 2nd graders into good behavior via rather vivid filmstrips of a fiery afterlife and the implication that we kids would be lucky to get off with purgatory. (All of which she did right after my father dropped dead in front of me when I was in 1st grade. Not exactly what I needed at that point in my life.) At any rate, having spent over 20 years of my life being utterly terrified by the thought of dying, I'm not sure I'm ready to help my sister confront her end. Julia on the other hand, believes in a glorious heaven enough for the both of us. I'm amazed by the depth and strength of her faith.

We are noticing other differences in Mary Claire. As I said, she was much, much more confused today. We would be talking with her and she’d just stare off into space and not respond. This morning I went to shower and when I got out and checked on her, she was lying on the couch, where we had left her, with her cell phone up to her ear. She had fallen asleep while talking to her husband Mike, who came back this evening and was, I think, a bit shocked at the difference in her since he left on Sunday. She's also having trouble feeding herself. She had issues getting the spoon to her mouth and kept dropping food. And it takes longer for her to take her pills. When we got here on Saturday, she'd pop them into her mouth easily. Today, I had to put each individual pill in her hand, then she would slowly raise her hand to her mouth, barely get the pill in, then take a sip of water.

So, we are afraid that the end is nearer than we originally thought. She does still know us. Our brother Clark and his wife are coming in tomorrow night instead of Thursday night. Jane is coming in Friday instead of Sunday. And I am beginning to see that I may be here still next week, even after Jane comes in. I know Larry is worried about me missing work next week. But I just can't bear to think of leaving MC. And I do have quite a lot of sick time that I can use if needed.

In one of Diana Gabaldon’s books, the main character talks about the ‘…heartrending and necessary task of helping a man to die.’

That is the business I am engaged in now. Only it is my sister who is dying. And it is breaking my heart.

Best Laid Plans

This is the second installment in a series of posts I wrote while taking care of my late sister Mary Claire Luce when she was in hospice in March.

Monday, March 17, 2014 
Jane, Mary Claire, Julia and I were supposed to be in New Orleans today.

A couple of months ago my sister Jane had come up with the idea of all four sisters meeting in New Orleans. It was a good choice, as New Orleans would have something for our many different interests: shopping, museums, antiquing, great food, and gambling. It was also a convenient place to fly into for all of us. Mary Claire and I were on board from the start. Mary Claire called Julia and convinced her that she could come, despite the trips being scheduled during part of one of the busiest weeks of the year for Julia's store on the coast of Texas.  Once we had all committed to the plan, Jane had flown into action and made reservations at the Windsor Court Hotel near the French Quarter and figured out how we could arrive at more or less the same time at the airport from three different cities. Tonight we had reservations at R’evolution for dinner.

It is the trip that will never happen. We are on a different journey now. 

The truth is, we cancelled the New Orleans trip a few weeks ago, before we knew that Mary Claire would be going into hospice. The swelling in MC’s right leg had gotten worse in January, so we had requested a return to lymphedema therapy at MDA. During one of the sessions, MC mentioned the plans for our trip and was told by the physical therapist that a flight, even a short one from Houston to New Orleans, was a bad idea for someone with her type of lymphedema. We already had doubts about the trip with Mary Claire’s increasing limited mobility and our worries about what we would do if she had a crisis when we were there. The therapist’s pronouncement made it official. We scuttled the plan for NOLA and decided to go to Plan B. We would all hang out together in Rockport or in Port Aransas during those days. We had already blocked out the time, we just changed to location to one that didn't require MC get on a plane and would enable us to get her to M.D. Anderson easily if a problem arose.

So, Mary Claire, Julia and I are in Rockport now. But instead of sitting in Julia’s newly installed hot tub and pool relaxing together, we are dealing with the very new reality of providing hospice care to MC.

A few facts about in-home hospice care: There is no ‘round the clock’ nursing care provided by the hospice service. The patient’s family provides the actual round the clock care. Yes, the hospice service is available 24 hours a day, but that is via phone. You call the main number and the nurse assigned to your loved one calls you back to advise you. If the issue is one that requires them they will come out, but at this point in time, we are scheduled to see the hospice nurse every other day. We also have a nurse’s aide who is assigned to Mary Claire who will come in Monday, Wednesday and Friday to help bathe MC and do other tasks for us such as change the bed linens, etc.

I don’t know how a person who is the sole caretaker of a patient who is in home hospice care does it. It is truly a 24-hour a day job, which requires a variety of skills: Organization, communication, and basic nursing skills. As it turns out, Julia and I have divided the tasks automatically. She is a take charge organizational genius, keeping on top of what is needed and dealing decisively with any issues that come up. I do the physical nursing including keeping track of Mary Claire's medications. And it works. Beautifully.
 
We are fortunate in that Julia and Jane both have financial resources that have enabled them to hire a lovely woman, Connie, who is staying with us at night, allowing us to sleep and get some rest. Julia had originally interviewed Connie as a possible nighttime care person for our mom, who is on the verge of needing round the clock care/supervision. But then Mary Claire reached this crisis point. So Connie comes at night to allow us to sleep. Not that sleep necessarily comes easily. But I am not taking anything to help me sleep because I want/need to be available if an issue comes up.

In between taking care of Mary Claire today, I worked today on setting up a remote office. Since there was no wireless network here at the house, my niece Ashley called the local network tech guys who came over and set up a wireless network for me here at the house. And I contacted the tech department at the school where I work to overnight the backup drive I have the majority of the photos and graphics I will need to get work done from Julia’s kitchen table. I am fully aware of how lucky I am to be able to work remotely and be supported by my bosses in this situation. Because right now, leaving Mary Claire is not an option. She needs help with almost everything.

We are noticing subtle changes in Mary Claire today. Signs that she is weakening faster than we expected. It worries us and we are concerned about when Jane should get here.  Julia has called Clark again and asked him to take some time off this week so he can be here by Thursday. My children are also making plans to come see Mary Claire. They cannot bear to not see her again. It’s a bit of a logistical issue, figuring out who is coming when and where to put them, but I work it out with them. I know how very much they love her. But I fret internally about MC ‘realizing’ that everyone is coming to say goodbye to her, knowing all the while that deep down, she knows.

One reason I know that is that today, MC’s main doctor from MDA called her to see how she was doing. I filled him in on what was happening with her while the nurse’s aide finished dressing her after her bath. Then I turned the phone over to MC, who told Dr. Zinner about how beautiful and peaceful it is here. And how happy she is to be here with the water and the birds and the sky. MC tells Dr. Zinner he must come down to Rockport as she is sure he needs a break. She tells him he can drink wine and Julia and Steve will take him on a canal cruise on their boat. We laugh later telling Julia about how MC has invited Dr. Zinner to come for ‘dinner and a boat ride.’ But not once during that conversation did MC mention getting better and coming back to Zinner for treatment. Not once.

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.

Now that I’m back…

And back after such a long period of silence, I feel that I should offer a brief snapshot of various and sundry things that have happened over the past year.  So, let’s catch up. And yes, for my conservative friends, I’m probably going to say a few things to upset you. So, y’all are excused. If you need something else to do, go check the Olympic medal count. Or go watch the curling coverage. (Or just skip the first three items.)

Here goes:

• I’m still not eating Chick fil a. Don’t miss it. At all.

• His Holy Hairness (Texas Governor Rick Perry) tried to run for President, made a damn fool of himself while on the campaign trail, dropped out of the race, then much to my delight and wonder, decided he would finally do what is best for Texas and not run for governor again.

• Pope Benedict decided he had had enough of people like me complaining about what he didn’t do to protect innocent children from predatory priests and decided to step down saying he was too tired to go on. (Yes, that would be my personal theory on why he quit the job.) Much to my surprise and delight, the College of Cardinals decided to elect a Pope who I actually like! Miracles do happen and I love that Pope Francis is shaking up the Vatican by insisting that those pampered clerics in the Curia and elsewhere stop living like kings and start serving the poor. 

• My daughter Emily graduated from the University of St. Edward’s Magna Cum Laude. She was also named a Presidential Award recipient. Which means that if you are in the St. Ed’s student center anytime until the end of April or so, you can take a look at a picture of her w/ her bio and an account of just why my darling child merited this honor. Am I proud? Why yes. I am.

• My sister Mary Claire and I went up to Connecticut last summer and visited out sister Jane together. First time MC and I had ever taken a trip out of state together. Or taken a trip together at all. We all had a blast and topped off our trip by meeting up with our sister Julia in NYC for lunch the day we left for home. How cool is that?

• My other daughter Sara, after definitely paying some dues by working at a small grocery store in Austin, was rewarded for her great attitude at said job by one of her customers telling her she was going to recommend that Sara be her replacement at the job the customer was leaving. Said job being a legal assistant to a local Austin attorney, that paid full salary and has fabulous benefits: Proof that being nice to people, even when you are having a rotten day, will be rewarded. And yes, I am proud of her. She had her dream of working and living in Austin and she did what it took to make it happen.

• My son Michael is going to grad school, pursuing his masters in school administration. And he’s doing extremely well. All while teaching 4th grade English, working on the side when he can, and being a husband and father, and father to be. (Yes, he and his wife have another child on the way! Yippee!) Am I proud of him and them? Well, yes. I am. 
 
• After what seems like over a year of growing out my hair, while claiming I was ‘rocking the ombre look' (I wasn't), I finally got my hair long enough to cut off the old dead dyed stuff and go completely gray. Am I happy with it? Yes. Extremely so. It’s great no longer having to touch up the damn roots and my hair is in the best condition it’s been in for years and years. Basically ever since I started dying it to hide the gray.  Quite honestly, I should have done this ages ago. So, go ahead. Embrace the gray people. It’s fabulous.

I think that covers all the major events since I left off. So onward y’all. I'll be back soon.

Good Riddance

January 2014 has not been kind to me. It was a rough month, starting off with the death of my best friend from childhood and ending w/ the death of my Aunt Edna (at 96 after a very full life). And there was a lot of other stuff too. Towards the end of the month, I started calling it 'Bitch Slap January.' 

But I’m tired of feeling like a victim. So, to counter all the negative emotions I have been feeling, I think it’s time to make a little list of good things and put my focus on them.

So here goes:
 
Yes, I lost Sara Gray. But at least I was lucky enough to have her as a friend. If I want to feel close to her, I am fortunate that I have the emails she sent me over the last few years. Those emails have made me feel better this past month and I am so thankful that in recent years we did conduct the majority of our conversations via the written word. Reading what she wrote to me makes me feel closer to her.

My son and daughter-in-law are expecting their second child in July. How terrific is that? I think it’s wonderful and I can’t wait for this new little human to join our family. 

My granddaughter Luci. Even when she’s saying no every chance she gets. It’s hard to be down when Luci is near.

My sister Mary Claire. Yes, we had a bit of tough month. But we also got to spend a lot of time together. Yes, I would have preferred that some of it hadn’t been spent in an emergency room. But what a gift it has been to me being able to help her through all she is going through.

Our neighbors, Sue and Andy, who, when called when MC was having an issue one afternoon, immediately went over and took care of her. Everyone should have someone like those two living next door.

My upcoming trip to NOLA with my sisters. Seriously. All four of us together in New Orleans. How cool is that? I cannot wait. Antiquing and shopping. Eating great food. The French Quarter. Museums. And of course, a few slot machines. This is something we’ve never done and I’m still a bit amazed that it is actually happening.  

My recent weight loss. Oh, I’m still fat. And I have a long way to go. But I’m not as fat. And I feel so much better. Amazing what just losing 10 lbs or so can do to make you feel better, more energetic. 

My plans for our living and dining room. Starting with the new windows going in today that will replace the truly ugly original 1960 era aluminum windows that we currently have. A few of the panes in our current windows are being held in by tape. Seriously. Once we get the windows replaced, I’m going to get rid of the wallpaper in those rooms, paint everything a fresh pale minty blue green and then, hopefully, finally get rid of the old dead carpeting and have laminate floors put in. Nothing like a new project around the house to take your mind off all the other stuff. 

Larry. Who has been there as I dealt with the past month. He truly cares and worries about MC. He is as committed as I am to doing whatever it takes for her. When I was in the first throes of grief over my friend Sara, and he asked what he could do to help, I answered that I wanted Sara back. Trust me to ask the poor man to do the impossible. Because to tell the absolute truth, I am not, on an average day, an easy person to live with. So he deserves much praise for putting up with me this past month and helping me through it just by being there.

My daughter Sara, who is happy living and working in Austin. Since switching jobs in the fall, she has gained so much confidence and experience. I am extremely proud of her for doing what it took to be able to stay where she loves in Austin.

And finally, among the wonderful people who keep me going is my youngest daughter Emily, who turns 23 today. Emily is sweet, hardworking, thoughtful, stubborn, caring, loving, smart and a bit of a piece of work. And I love her beyond all telling.  Happy birthday darling child and thank you for being one of the reasons I am emerging from this bit of darkness.

A Hole in My Universe

Tonight I learned that the person who taught me how to live has died. 

Sara Leigh Gray (May 26, 1956 - December 31, 2013 or January 1, 2014) was my best friend in this world and beyond. I met her in Kenedy, Texas when we were in 7th grade. I'd lived in the area all my short life and she had ended up there after her father took a job managing the uranium mine located outside of Falls City, Texas. I should say that ending up in Kenedy was much to her dismay. However, it was one of the major blessings of my life.

I've written about Sara before and what she has meant to me. I meant every word. And there is no reason to reiterate what I have already said. But if you hadn't read it, read it here: Best Friends. Thankfully, this was written for Sara's birthday a couple of years ago and she had read it and knew how much she meant to me.

I am grieving tonight because the world and I have lost a woman who cared passionately about justice and right, and who loved me, despite the fact that I am, in so many ways the polar opposite of her. She wasn't famous and never aspired to be. She lived a quiet life with her partner, Mike, who is in shock and grieving tonight hoping to wake from this nightmare of a world without Sara. She was a woman of integrity who cared deeply about those she loved, had an incredible work ethic, and wanted nothing more than her quiet life while holding onto a hope that the idiots out there running the world would not run it into the ground. And I am grieving because never again will she be on the other end of a phone call, or will I open my email to see a long overdue message from her. There is a void in my life which will never be filled. I am desolate and I want her back.