Friday, December 31, 2010

Not As It Seems

Just got back from visiting a friend in the hospital. A year ago this time, I hadn't met her. Then, sometime in May of this year, some other friends of mine told me about her. She had been recently diagnosed with ovarian cancer and had to have intestinal surgery that required the use of a colostomy bag for some time. She had the intestinal surgery reversed in October as a result of the success of her chemotherapy treatments. Things were looking up for her.

She has been dealing with some intestinal issues since November and is back in the hospital again awaiting her doctor's return from vacation to discuss how to move ahead.

She was in the hospital the week before Christmas and had her heart set on being home for Christmas. Her wish came true and she was home for Christmas but is now in the hospital for New Years. She is heartbroken, a bit cranky and low in spirit. She had expectations of how far along she should be right now with her recovery and reality is not in sync with her calendar. She is going through a different sort of advent experience. One that is not joyful and full of hope.

That her advent experience is closely connected to 4 holidays (she listed Halloween, Thanksgiving, Christmas and New Years as holidays that have been "ruined" for her this year), is the reason that as of this writing, she is not a happy soul, emotionally. Her current mental state is counter to how I have come to know her.

The emotions of a cancer patient can be like an iceberg that even the patient can not see. There are realities that hide below the surface and when they surface and the light of day shines on them, they overwhelm the mental, and ultimately physical, well being of the patient.

With that said, I think of how the list of holidays mentioned have affected my friend. I fret about the pain and pressure that have been attached to single days that commemorate what should be a full time feeling. The fun of Halloween, the overwhelming gratefulness of Thanksgiving , the hope of Christmas and the promise of the New Year should not diminish the day after. I have heard (or perhaps have become sensitive to) "Now that Christmas is out of the way, I just want to rest," more often this year than ever. It pains me to hear it.

If we can continue the energy and shine the light of the holidays even brighter the day and days after, then maybe my friend will know she can focus on getting and being well. Then, every day that follows her recovery will be a celebration for her and for others like her.

Longing for the day that the spirit of the holidays is everlasting, is my advent experience. May we all bring it about.

"There is no ideal Christmas; only the one Christmas you decide to make as a reflection of your values, desires, affections, traditions." -- Bill McKibben

Wednesday, December 22, 2010

I Ate One Thing At A Time

As a kid, I would frustrate my family when the food was passed at supper time. I would wait for the item I wanted to eat first, put it on my plate, finish it, sometimes rinse off my plate, come back to the table and asked to be passed the next item. This was after all of the dishes had been passed and everyone else but me would put everything on their plate, finish everything and then maybe ask to be passed the dish of the item of which they wished to have seconds. It was less intrusive than my practice of interrupting the others while they were eating. I don't know how the habit started, but I know it had everything to do with not wanting to blend my food together on my plate. The statement, "What does it matter, it all ends up blended together in your stomach anyway?", didn't work for me. I have since moved beyond that practice. However, I will not put dessert on the same plate on which I ate my meal without rinsing it off first. You can't blend those two taste sensations. Turkey gravy and apple pie, do not mix! I guess I started to grow out of it when I would go to family reunions and go through the food line. Too much trouble to go back through multiple times for each item when there are multiple items of which I want to partake. That, and it's kind of rude to interrupt a conversation with a relative I haven't seen in awhile just so I can go back to the food table again and again.

And that is where I am at this writing. The last two years, I was on my "sabbatical" and an annual tradition of mine got set aside. I hesitate to speak of the tradition because I may disappoint you in that I may not get a chance to share the tradition with you this year. But....if I do disappoint you, let me know and I will do my best to make you part of it this year. Honest!

The tradition....I make apple butter from my own recipe. I've even branded it. It is called , "Angus Fraser's Applebutter." I make a couple different variations of it. One is the regular flavor, another is labeled, "Rum/Raisin," (you can figure out why) and the last one is ,"Not For The Wee Ones." Guess what that's about.

I almost did not resume the tradition this year because I'm lazy. However, one of the caregivers from my (Pause here while I listen to one of my favorite Christimas songs...by The Carpenters. If you can correctly guess what it is, you will win a free half-pint of Angus Fraser's Applebutter.) "sabbatical" told me that I needed to do so. I am proud to say that I have finished and canned one batch and another batch will probably follow over New Years. The initial reviews are that Angus Fraser is back and better than ever.

Today, I took some to the folks who were not part of the tradition prior to my "sabbatical," but were a large part of the reason I was able to resume the tradition. It felt odd to do so. I associate visiting them this time of year with going in for treatment. But now, we have a new thing to associate with this time frame.

Even though all of the dramatic stuff is over for me, it still occupies space in me. I know that it always will. However, it will not be the driver of the car. Just some stuff in the trunk that rattles around every so often that will eventually get tossed out some day. It will take time, but it will happen over time.

I reckon it's part of the process of learning to put multiple and varied items on the same plate at one time.

Behavior changes with affirmations. Stuff comes along to get your attention. Look at the title of my last post. I've was asked to read Isaiah 60:1-6 in church on January 2.

Wow.

May you not just enjoy the Holidays. May they affirm and confirm the goodness that resides in you and the rest of us.

Let it shine.

Deep peace of the running wave to you.
Deep peace of the flowing air to you.
Deep peace of the quiet earth to you.
Deep peace of the shining stars to you.
Deep peace of the infinite peace to you. 
   -Gaelic rune

Thursday, December 16, 2010

"Arise, Shine, For Your Light Has Come"

Dear Friend,

This is about you. Really. However, it's from my viewpoint. 

The writer of today's title was saying something that was about others, not himself. It was from his viewpoint about something he had seen. 

That's what I want to tell you about today. This is the first December since 2007 in which I won't be sitting in an infusion chair. Frankly, it seems a bit odd. Those times were times when others had figuratively wrapped their arms around me and provided care. Even though I've been back to "normal" for slightly over a year, sometimes....

However, their work and support got me to where I am now. Now, I need to honor their work by continuing to step out into the world and deliver to others what was given to me. 

A friend of mine posted this on her Facebook page today: "I love it when someone helps me perceive generally accepted concepts differently, revealing deeper truths . This is from Ben Campbell, Pastoral Director at Richmond Hill. 
   The Last Judgment is a teaching about heaven and hell, but it is not what you think. Jesus' parable at the end of Matthew where the sheep and the goats are divided defines heaven and hell. Heaven is a place where people live in community, taking the lives of the others in their community as seriously as they take their own. Hell is a place where people don't care about one another. 
   Heaven and hell are immediately at hand. Both are experienced in daily life. Hell is always in danger of swallowing us up. Heaven is always available, in the twinkling of an eye, in the awakening of a conscience, in the opening of a mind."
I have seen the shining light. I have glimpsed into heaven countless times in the last few years. I think that it's important to not only be open to take looks into heaven, but maybe spend some time there, learn some things, deliver them to the world, go back again and keep delivering back to the world.
 
You don't need to immediately start doing it on your own. The only thing you need to start doing is to be open to knowing that you are going to see and experience some pretty amazing moments. Then, at some point, if you decide to listen, the trumpet shall sound.

"Let the moment go...
Don't forget it for a moment, though.
Just remembering you've had an 'and',
When you're back to 'or',
Makes the 'or' mean more
Than it did before.
Now I understand-
And it's time to leave the woods."
- Stephen Sondheim

Monday, December 13, 2010

Say, Doc....

Dear Friend,

A certain guy, having just completed a meeting with his doctor in which they discussed his upcoming cancer treatments and the effect they would have on him (No, folks that know me, it's not that story), asked his doctor, "Will I be able to dance after this is all over?" She replied, "Of course you will." With relief he answered, "That's great, I've never been able to dance before!"

If I had a list of ten wishes (or so) of things that I wish I could do before I die, one of them would be to be able to dance like Danny Kaye in this video. I watched this movie the other night and remembered how this particular number blows me away every time I see it.

A common statement heard among those who have experienced major medical difficulties is that the experience does change your life. For some folks, it may be a complete 180 degree turn. For others, maybe just a couple degrees in direction. However, there is a change.

Once things get back to "normal," some of the old concerns, finances, career, retirement planning, spiritual health, etc. come back to take their "rightful" place in your life. There are those who have not been through your experience who may try to prioritize those items in your life. Don't let them. You can listen to the noise of "wise" counsel, or, alternatively, you can seek out wisdom. In the end it is you who will make the call of how to proceed.

A "gift" from your cancer experience is a more finely tuned sense of discernment. You've been in situations where you have seen great people doing great things. Whether they have been members of the medical profession or friends and family who have surrounded you, you have seen the best that people can be.

In addition, you are now challenged to continue to make it all about you; which turns into making it about others. You now know what true goodness really is. You've seen examples. You will become another member of the growing list of witnesses and deliverers of goodness to a world that hungers for that goodness.

Maybe, just maybe, you may even find yourself dancing.

Sunday, December 12, 2010

She Started It


Dear Friend,

Sorry so long since the last part of the letter, but I've been contemplating how to start this segment, and I've been a little self absorbed in other activities (including a one on one bout with my washing machine). As promised, here is the part about how to "torment" the medical professional.

The day after I was admitted the hospital for the first time, my friend Jenny showed up with what I called a "bag of fun." In it were various "items of distraction," including a gel-like bloody hand that you can adhere to a window. As my admittance date was 3 days away from Halloween, the hand was appropriate. We immediately adhered it to the window in my room and watched the reactions on the faces of all who came to visit. The medical assistants, nurses and doctors all shook their heads as if to say, "We got a unique one in this room." However, one of the other items Jenny brought came with a set of instructions. It was a bowl of candy. Her instructions were, "This is nor for you, it's for the medical staff. They need treats." Brilliant! From them on, whenever I spent time in the hospital, there was always a bowl of candy in my room for the staff. I learned it was an easy way to get everybody on the floor to come visit, whether they were assigned to you or not. I think it helped me get some extra special treatment. I even found out where the snacks for patients were located

I carried that same practice over into the clinic whenever I went for chemo treatments. I didn't do it the first time because frankly I was a little preoccupied leading up to that day. One story from that day is when I was introduced to the nurse that was assigned to me for my first treatment. She walked up to me and said, "Mr. Frazee, my name is Laurie and I'll be your nurse today." My immediate response was, "Mr. Frazee is my dad." I said that to let her know that she could call me by my first name (which she now does). However, that is not how she took it. She tells me to this day that I snapped at her when she first introduced herself to me. I've told her it was not my intent to come across that way. Since then, we've "mended fences" and share stories and much laughter.

I think once she (and the rest) saw how I was going to entertain myself during chemo treatments, they knew I was "Greg" and not "Mr. Frazee." Once again, Jenny helped me along with that. At my second treatment, Jenny and I watched the movie, "Arthur." If you don't know the movie, one of Arthur's habits was that he drank....alot. In addition to watching the movie, we had popcorn, lemonade, and.......shot glasses. As we watched the movie, every time Arthur would take a drink, we would pause the movie, pour a shot of lemonade and take a drink. We found it amusing and, frankly, were the only people laughing in the room that day. We did raise the curiosity of the other patients and the staff. We were a little worried about disturbing the others, but we didn't get too boisterous. The next day, one of the staff in the room told me, "We got the biggest kick out of watching you and your friend yesterday. That's what this room needs. She lit up the room."

Following that lead, I contributed St. Patricks Day wigs, a beanie hat with a propeller, humorous buttons from GotCancer.org (including a "special button" for my doctor that read, "My Oncologist Is My Homegirl") and music CD's to the clinic (tell me, have you ever associated salsa music with a chemo treatment room - now you can).

Again, this isn't for the purpose of saying, "How cool is Greg." It goes back to the "It's about you" statement. If you have a sense of humor, cancer doesn't take that away from you. I have yet to hear that someone has been diagnosed with humor cancer. If you are having a hard time finding your sense of humor right now, that's OK. It's in you. It will come back. However, you don't have to get it back on your own.

Maybe you have a friend like Jenny who can help you find it.

Wednesday, December 1, 2010

"....And So Do His Sisters, And His Cousins, And His Aunts!...." *

Dear Friend,

I continue. The folks surrounding you that are not medical personnel may struggle with how to talk to you. It will frustrate you. It will frustrate them. Once, I was speaking to the 13 year old daughter of a 40 year old acquaintance. She said, "Dad doesn't get it. He has no clue what is going on with me." I asked her how many times in his life her father had been 40 years old with a 13 year old daughter. "Never," she replied. I then asked how many times in her life she had been 13 years old with a 40 year old father." Again, "Never."  I responded, "You both are sorting and working your way through this. Give each other a break."

There, I said it. There are no rules in front of you about the emotional and physical of all this. There are medical guidelines you need to follow as far as letting who know what when you feel pain, fever, nausea, etc. But even those are kind of hard to follow sometimes. You may feel like you need to "tough it out" with some things. Stick to the guidelines. Some physical symptoms can lead to worse symptoms and they can come on quickly. I'm not saying it will happen. Just know you have support with that and take full advantage of that. I will admit I tried to "tough out" some symptoms at various times and fortunately I was in the chemo room when they happened. Talk about attention!

Getting back to the "communication struggle." I once vocalized my concerns about how others were talking to me with my Nurse Practitioner and she explained that I was the one that needed to set the tone for how others talked to me. If they felt my anxiety, they would absorb it. If I spoke in anger, they would respond in anger. It was an early challenge from her, but a well timed one. If I could face that challenge, then it would help me step up to the physical challenge I was facing.

Another communication frustration is when others will want to connect with you by sharing stories of people they know who are going through a cancer journey and all of the bitter details involved. Bless their hearts. I'll insert an anecdote here. Not long after I started treatment, someone approached me and told me a story about how a friend of theirs had been receiving chemo for a cancer diagnosis and then developed a heart ailment. They explained that the heart ailment was attributed to the effects of chemo on their  friends' heart. I shook my head and asked, "How is your friend doing now?" Got the answer and then changed the subject.

These folks mean well and that is the only thing they know to say at the time. You may want to tell them, "If that is all you have to say to me, then don't say anything at all." But know this, they are trying to reach out to you and that is a stumble on their part. Your challenge is to be the one to catch them when they stumble. How do you do that? If you are comfortable, share a little of your new knowledge with them. If not, ask them how they are doing. I would sometimes say, "Tell me some stories about what you have been up to." Their eyes and body language will thank you.

Don't get hung up in some of the actual messages. Focus on the care and compassion that is at the root of the message. Once I really started paying attention to that, my stress level diminished and the conversation topics started changing. You can also simply say, "The door is open for ANY questions you may have." That can help take the edge off for you and others. But, only if you are comfortable with it. By being open, you will help take away some of the mystique and inaccurate information that exist about the world of cancer.

Up next, how to "torment" the medical folks and ultimately endear yourself to them.

And now....rest.

*Gilbert and Sullivan