Friday, March 30, 2012

Grief by Surprise: Tears of a Chaplain

This morning I went to a seminar presented by members of a support group from our metro community. I was looking forward to a morning of learning and meeting other professionals. Once there I relaxed in a nice chair with my mug of coffee. I ate my breakfast brought from home as others ate the free breakfast. It was nice, relaxed, and planned. Although we all had name-tags there were very few people I knew personally in the room.

As the presenter began speaking I hadn’t had any way to know my mood would dramatically change. She lit a candle and told it's meaning in the room. Then she said she also needed to mention that the candle was to remember two friends who had died this last week. One died suddenly and the other from an illness. Their photos popped up on the screen as she named them.

There she was.. my patient.. the presenters friend.. This was a photo of her with her smiling face and head full of hair. There it was, her photo, as this presenter told about how her friend had championed for this cause before her illness.

Her friend. My patient

She was my patient who trusted me to tell me so much. It was her family who trusted me with their fears and wonderful stories. She was my patient, whom I married to the love of her life in her hospital room only a month ago. She was my patient who died last weekend; the patient I last saw with a smile on her face. There her photo was before me.

As the presenter mentioned her name I flashed all that I said above in milliseconds. I audibly inhaled a gasp and whispered aloud, “She was my patient!” as I welled up with tears. I fought the urge to leave. The presenter was tearful as well saying she “hoped to not do that” but did. We made eye contact and decided without saying to talk after the seminar.

In my profession many people move though my professional life. Every single person matters to me when I am in his or her presence. No, I am not thinking about another patient, a meeting, lunch or anything else BUT YOU. When I leave the room I may say a silent prayer and then move on to the next person and their family. It is a way of life for those of us in helping professions.

Almost a year ago there was a patient at the end of her life who asked for me. I sat beside her and we spoke. I choose not to share those precious moments specifically here. After leaving her room I made it as far as the nearest nurses station before becoming tearful. This is extremely unusual for the nurses to see so the ones close surrounded me with hugs and tissues. One of the MD’s came over and asked me why I was so sad. When I told him he too welled up with tears. One of the nurses broke the sadness by remarking, “OH NO! Both the Chaplain and the Doctor are crying!!!” Indeed it must have been quite a site for us two to be sitting with red noses.

I confess. I care about every patient I see. I give each of you my best. In addition there are emotional connections made that are left unsaid. I remember an elderly woman who reminded me of my grandmother. I am sure I made an extra visit or two to her room before leaving at night on my own time. How about the couple that had met as teenagers and never been apart? Now he lay dying as a 50 year old. Why did I lay awake at night thinking of them? I do know why. There is an obvious connection in our human experiences or the story is compelling. Of course I kept this all to myself. However, Those two stories were from almost 10 years ago, meaning I remember them as impacting me.

The presenter and I embraced after the meeting and cried. She had lost a dear friend and I cried for the loss in this world of a magnificent woman.

I would not be able to give each of you my best if I was this affected by every loss. That said I am grateful to shed tears. My tears always remind me how important our connections are and how much you deserve from me. My tears keep me humbled.

Dedicated this day for a woman who will be missed by many and remembered by this Chaplain.

Sunday, March 25, 2012

I wonder.. about Jack

Stories for a child.

I was with an 8 year recently.  He watched television, played on his electronic handheld device and played chess on a tablet device as I observed his face. Much like I remember as a child, while reading, he looked like he was 100% engrossed in his activity.

What did I do when I was his age? Roller skating, are you old enough to remember the skate key? Jacks when the ball was the key to a good bounce. Marbles when you could win or lose your cats eye or possibly your shooter. At times I would catch a desert blue tail lizard and then let it go so it wouldn’t die. When I was bored I would take a volume of the encyclopedia and leaf through it looking for pictures and read the captions.

Back to the present, I was asked for a hug before bed. I asked him if he’d like me to tuck him in. He thought that was just fine so I followed him. He asked if I could also sing to him, a nightly duty of the tucker-in-er. I would have had I been able to think of a song! So instead I asked him if I could tell him a bedtime story. “Yes, yes, YES!” he said.

We began, little did he know it was to be a combine effort.

ME: Once there was a little boy whose name was ______ ?

HIM: ummmmm Jack!

ME: Once there was a little boy whose name was Jack. He lived in a neighborhood with lots of houses. His house was different from all the others. The first thing was the color. His house was _____ ?

HIM: RED, no… PURPLE, no…  VIOLET, no.. PURPLE!!

ME: Once there was a little boy whose name was Jack. He lived in a neighborhood with lots of houses. His house was different from all the others. The first thing was the color. His house was purple.

And there we went to Jack’s world. It turned out he had skylights where he saw the moon and stars in the shapes of a cow and a bull. There was an owl who hooted Jacks name and made him giggle. Jack had a good nights sleep and when he awoke the sun was out. Jack thought it was a beautiful day so he and his family were going to ______________.

Time for sleep now.

“Why did you stop with the story?”, he asked. “What about the rest of the story?” I replied that we could add to the story whenever we were together.

One of my all time favorite movies is about a princess who is betrothed to marry a prince she does not love. The movie begins with a grandfather telling his grandson this story before bed.  

I wonder what adventures Jack in our story will encounter. I’m hopeful we will have several more years to build this story.

I also wonder if children in 2012 have time to wonder…..

Friday, March 2, 2012

Lions and Tigers and Bears… OH MY!!!!!!

 The courage it takes to be a cancer patient and family.

“I don’t like this forest”, said Dorothy

“I think it will get darker before it gets lighter”, said the Scarecrow

Clinicians gather to seek each others opinions as to how to best support our patients. Often I receive consult requests from physicians. When I reply we talk about the patient, their clinical status but more than that, their personal situation. My next step is to meet the patient, their family and friends. Other times I meet people as I round in the treatment areas and inpatient floors.

Different diseases and their treatments often have a range of physical responses. The staff may ask a patient of they are experiencing symptoms such as pain, nausea, feeling tired, tenderness in a part of their body etc. or what is called “brain fog”. There may be transportation issues or the inability to perform necessary daily tasks. Our departments of social work and our navigators have an amazing range of knowledge and are a tremendous resource as well.

Patients may share with me that they don’t like the side effects however the staff are balancing them with medications or other suggestions. No one likes this forest. And it may get darker before it gets lighter as the scarecrow remarked. My support piece is to gather the parts of your experience that you may not be able to tell anyone else. Other times I have the profound joy of celebrating good news with you.

This week I was in conversation with numerous clinicians and other medical professionals discussing how we could make our patients feel better as they navigated their treatments. We also discussed what might make the experience easier.

Working in Radiation Oncology these last months has given me an additional view of what courage looks like. Courage looks like a patient whose spouse abandoned them and they come for treatment alone. Courage looks like overcoming panic. Courage looks like walking through the doors every day for 6 weeks. Courage looks like putting make-up on and a smile, and comforting the other patients as you wait for your own radiation. Courage is celebrating your last treatment with the staff. Courage is as varied as every person walking into our treatment center. I truly respect every one of you and am grateful you let me get to know you.

This week I was particularly moved by the courage it takes for not only the patients but their families and friends. Each of them “have to stay stay strong”, “can’t let him see me cry”, “what are ya gonna do?” every day.

I therefore ask YOU who are reading this. How could we as clinicians make this experience easier for you? One person said her reply was always help with kindness. I believe we do. What in a practical way would make your experience easier or better? No suggestion is too minor! One patient’s wife was concerned about parking so I consulted with our valet parking company to see if they could add additional staff on the days when Rad/Onc is the busiest. That is only one example.

I ask you to think and share. Is it the rooms’ paint color? Music? Privacy? Simple things or large requests I ask you to be open and creative. Please let me know. We cannot change the fact of cancer but possibly we may be able to make the road back out of the forest a less stressful and easier journey.