Reflection

During my last Hospice experience I learned that the dying have a lot more control over timing than we give them credit for. I've heard stories about people who wanted to die alone, so they waited until everyone who stood vigil over them for days were out of the room (using the bathroom, going to the vending machine 'really quick', etc.), and choose to die at that moment. I've heard stories of people who waited until their loved one was able to make it from across the states. The event that happened last Thursday brings a whole new meaning to what I've learned.

Please know that I'm referring to the patient as "the patient" out of respect for their privacy; not as a sign that I think of the patient as a non-person. I will never write anything that will come anywhere near invading our patient's privacy, therefore, they will always be "the patient" with very sketchy details.

On to the story...

Last Thursday night, our last Hospice training session, a Hospice team was brought in to talk to us about a patient who was currently in Hospice. Each patient is assigned a team of four people; a volunteer, a registered nurse, a social worker and a non-denominational minister. The four people from this patient's team were there to talk to us about each role in caring for the patient.

Prior to talking to us, we were asked to listen to a piece of music from the last Lord of the Rings movie and symbolically bring that patient into the room with us to affirm his life.

The volunteer commented right away that this piece of music was perfect, because the patient loved the water and sailing. Of course, the lyrics are also quite symbolic of dying and going to another place.

Lay down
Your sweet and weary head
Night is falling
You've come to journey's end
Sleep now
And dream of the ones who came before
They are calling
From across the distant shore...


What can you see
On the horizon?
Why do the white gulls call?
Across the sea
A pale moon rises
The ships have come to carry you home

Friday morning, the Hospice center got an announcement that the patient died at the exact time we were completing our ritual to welcome this person into our thoughts. That sent me a pretty powerful message; something that seems to happen to me frequently with my Hospice work. This is one of the reasons I love Hospice so much. I get more out of it than I could ever give.

Tonight was the second Hospice training session. A nurse came in and talked to the class about what dying looks like. As she discussed the different steps, I would think about some of my past patients and how they were in that particular place in their journey. I could tell by some of the questions that people asked in the class that a lot were afraid that someone would die while they were alone with them. That never happened to me, and I'm glad.

At the end of the class we did an exercise, a very enlightening one. We were given four sets of five small pieces of paper. On the first set of five we were to write down possessions we have that we like; the second set was supposed to be things we value in ourselves; the third was supposed to be hobbies or things we do that we enjoy; and the last set of five were relationships.

Mine were (in no particular order):
Possessions- car, piano, espresso maker, wedding ring, music collection
Things I value in me- my independent nature, I'm happy, I like to serve others, I easily show love, my intelligence
Hobbies/things I enjoy doing- graphic work, internet research, hiking, my job (yes, really!), music
People- My husband, my sister, son #1, son#2, and my brother

Then soft music came on and the lights were dimmed. We were asked to listen to a story, and asked to place ourselves as the main character of the story. We followed this character as she found a lump that shouldn't be there; found out the lump was cancer; went through treatments; treatments stopping because they were not working; started actively dying; and finally the people with her when she died.

As we were told this story, we'd be told during certain phases to give up random numbers of those slips of paper. We were not given a category that we had to choose from. Just take the number of slips that we were instructed to pick and crumple them and throw them in the middle of the floor. This was to represent how the person feels as she's dying and starts losing things important to her. Of course, my last five were the people in my life. The two other things I had a hard time giving up were my independence and my ability to love.

It was difficult to not be absorbed by this exercise; to not think about the "what if's".

My last two slips of paper were my sister and my husband. Then I had to choose. Believe it or not, I chose my sister. I am not going to defend my decision, even though I know that my husband is supposed to come first. Or should, anyway. I couldn't love or adore my husband any more than I do, and it has nothing to do with any sort of relationship problems; because frankly I think we're pretty perfect. It has more to do with the trust and deep bond I have with my sister. She knows me like no other, and I feel that she accepts every piece of me just as I am - just as I do with her. I really do believe that she and I are soul mates. My husband knows the bond with my sister, and I think he'd understand. Thankfully, it's a choice I'll never have to make.

Lastly, we were asked to imagine our body laying in the bed after we die. We're looking down on it and we're asked to imagine who is in the room with us. It was my husband, my sons, Ranger Mike and my sister.

Seeing all of the crumpled papers on the floor really had quite an impact. There are 20 people in my class, and those are a lot of dreams and passions crumpled up on the floor. We were told to stand in a circle around those things we "lost" and hold hands and think about those that we are about to serve. It was a great exercise.

The exercise reminded me of my first hospice patient. She held tight to the same things I hold dear. Family, independence and service to others. I met her while she was still able to get up and around. She didn't have a lot of energy, so she used me as her conduit to do things for her family. She'd have me cook dinner for her husband EXACTLY the way she cooked for him. It was important to her. She supervised me cleaning up her kitchen and putting things away EXACTLY like she would have. Eventually, she didn't have the energy to even do that and she started giving up those things; just like those crumpled up pieces of paper. She did it with grace and I hope that I'll be able to do the same when my time comes.

Not very risible tonight, eh?

Today was the first day of Hospice training. Even though I've done this before, I have to go through training all over again. That's OK, it never hurts to get a refresher. Prior to getting into the whole training piece, we were asked to think of a person who's spirit you'd like to have with you today. He said that that person could be alive or have passed on. The trainer lit a candle and turned off the lights and played a beautiful piece of music. My immediate thoughts went to my friend with cancer. I decided that I wanted to have her spirit with me today.

I did call her yesterday, but it was really difficult for me to pick up the phone. I'm glad that I called her, but the voice on the other end wasn't the voice I was used to hearing. I could hear that she was exhausted. I knew it wouldn't be one of those laughing types of conversations that I'm used to having with her. I'm glad that she didn't even try to pretend to have energy for me. She hasn't been able to eat for almost three weeks, so has a feeding tube. I kept the conversation brief, told her that I was thinking about her and wanted her to know that. She said she'd call me when she's back to work so we can reschedule that lunch date. I dunno.... I got a sinking feeling that this time she wouldn't be back to work. I don't know how she's made it this far. People generally don't survive ovarian cancer, especially if it's metastisized. I don't have that much of a survival instinct. I couldn't do that many years of chemo. That phone call made me very sad. But I'm glad that I did it.

So, back to the epiphany. I was sitting in the dark thinking about my friend. I kept wondering to myself why on earth it was so hard for me to reach out to her, when I'm perfectly able to do it with strangers. I'm not afraid of death or people who are dying. That's why I joined Hospice in the first place. This is something that I can do, that not many people can. When I'm with a Hospice family, I give them everything I have. It comes very easily to me. When I made my living as a singer, I wasn't nervous singing in front of perfect strangers. Didn't matter how many people were in the audience. People I know ask me to sing for them, and I flat out won't do it. The very idea petrifies me.

So, there's the pattern. It's all about making it personal. Now what?

I have a friend with cancer. I'm not sure that I should have the honor of calling her my friend. I haven't been a good friend to her. I'm not sure I know how to be a good friend. The only person that I can honestly say that I'm a good friend to is my sister. I know that I'd do anything for my sister. No question about it. I know that she knows that. Is that the test of a true friend?

I see people who have maintained friendships for years and years. I'm not one of those people. My husband is one of those people. I want to be one of those people. I have only one friend (besides my sister) who I've kept in contact for many years. It's only because she is the one to contact me. I love connecting with her, talking to her, writing to her; but it doesn't occur to me to do it unless she reaches out first. How must that make her feel?

I have friends who I think about often, but don't do anything about those thoughts. I wish they knew that I thought about them. But how could they? I don't tell them that I think about them unless I see them. Sometimes that could be years. Such is the case with my friend with cancer.

She was diagnosed with ovarian cancer four years ago. She had an office three doors down from me. I love her sense of humor. We'd go into each others' offices and just laugh and laugh. Then one day she told me that she was in pain. It was in the right upper abdomen. She knew that I had liver problems so was hoping to get information from me. We decided it was her gallbladder and so she went to the doctor. It wasn't her gallbladder. She had ovarian cancer and it had spread. She went into surgery immediately, and then on chemotherapy. She lost her hair. I emailed her and I visited her at home. Then, she came back to work. She regained her hair. I never asked if she was in remission and was off chemo. She never told me. Perhaps I didn't want to know.

Eventually I changed jobs and started dating my now husband. I lost touch with my friend with cancer. I lost touch with a lot of people. It's a pattern with me. I tend to focus on what is at hand right now.

I saw my friend two weeks ago. She happened to be in my building. Her hair was gone. I lost my breath. How could I have deserted her like this? Who cares if I thought about her? Did I do anything with those thoughts? No. No, I didn't. I was too focused on my own life. What the hell is wrong with me?

I saw my friend and just hugged her. I didn't mention the fact that she lost her hair. I wasn't prepared for that. I didn't know what to say right then. So, I did what I do best. I wrote her a letter over email. I told her that I didn't like what I saw. I asked her when she went back on chemo. She's been on chemo for this entire time. It just happens that she lost her hair recently. I told her that I missed her and I wanted to catch up. And I did miss her. That's the thing. When I see these friends that I've ignored (for lack of a better word), I really do realize how much I've missed them and how much I really care for them. But, what do I do about it? Nothing. What the hell is wrong with me?

I set up a lunch with my friend. She said that she was really looking forward to it because nobody could make her laugh like I could. That made me feel good and guilty at the same time. I should have been making her laugh these four years.

The lunch was supposed to be today. I told her that she gets to pick the restaurant. I emailed her this morning asking where we were going to meet. No answer. I figured she was too busy to get to her email, so I called her voicemail. It indicated that she'd be out for an indefinate amount of time. I lost my breath again.

I got a call from her alternate reader at work. He told me that he saw my email to her and didn't want to leave me hanging. She was in the hospital for the last two weeks, but just got home.

I have her home phone number. I will call her tomorrow. At least I hope that I do. I want her to know that I really do care about her a lot. I want to make her laugh. I want to show myself that I really do know how to be a good friend.

I feel like I am a good friend when people reach out to me. But why don't I reach out to them? I need to work on this.....

I finally got real with my husband tonight. I broke down (I sure hope I don't have swollen eyes for work tomorrow... ) I've been holding back what scares me about this whole thing. What scares me the most is not being the person he fell in love with. I feel that he fell in love with a vibrant, independent, happy person. I told him that right now I wish I were single and had not brought him into this mess. He hasn't been with me long enough to have to deal with *this*. I want to give him a "get out of jail free" card. He won't take it. I pray that I don't push it.

One side of me knows that I'm just borrowing trouble. I mean, the doctor hasn't even talked to me yet. The other side of me is like a boy scout. Always prepared. I want to prepare my husband for what could happen. I want to prepare myself.

I think I've run through every scenario in my head. It doesn't help that his dad has emphysema and is hooked up to oxygen 24/7. It doesn't help that I see his dad struggling to just go from his car to our home. I am very familiar with this *thing*. I exchanged email messages with his dad today. I asked him how he found out about his disease. His came from smoking. I've never touched a cigarette in my life. Ok, once I did- but I didn't light it. I was cruising with my roomate and we thought it would look cool if we had cigs in our mouths. Silly 17 year old girls!

He told me he'd rather have the lung thing than the liver thing. I told him that I'd rather have the liver thing than the lung thing. I'm very familiar with with the liver thing. I've lived it for 20 years. I've experienced as much physical pain as I think one could possibly have. But at least I could breathe. I can't imagine not being able to breathe. It makes me claustrophobic thinking about it even now.

I remember being a little girl living in Los Angeles. The smog got to me so bad that I could only take short little breaths. I laid on the couch and worked very hard to breathe on those smoggy days. I can only imagine that this is what it'll feel like. I can still rememer it enough to know that I just don't want to go there. I don't want to live like that.

I've been having small panic attacks the last few days. I can't take a full breath when I have these panic attacks. This happens when I'm very stressed out. Yeah, I know I could alleviate the whole thing by allowing myself to put work second. I should have gone to the doctor on Tuesday.

Know what? I think I intentionally put this off. I need to quit being a work martyr. Part of me is avoiding the truth. One of my friends gave me an ostrich beanie baby one time. She said that it reminded her of me. I'm always burying my head in the sand. Maybe I was an ostrich when the nurse tried to schedule an appointment the next day.

Two more days. Breathe...

I am glad that my day is full of meetings tomorrow. It'll keep my mind off of things. I'm good at that. I had a therapist that told me that I have lots of boxes in my brain. Put *this* away in this box and pull *this* out of that box. That's how I cope. I guess living the life I've lived has been a gift in times like this. I've learned some great coping (or should I say ignoring?) skills.

It's late. My husband is asleep. I can't sleep. I wonder why.... I should at least try. Tomorrow will be a long day.