Take Two Chuckles and Call Me in the Morning

It has been nine months since Dr. Richard Gould said to me, "I'm sorry, but the bone marrow biopsy came back positive for cancer. That means you are in stage 4 of lymphoma." I told him that just like all of life's challenges, this would eventually end up as a huge positive blessing in my life. But of course I was frightened. Frightened of the unknowns such as long term affects, pain, my career, insurance, treatments, support . . . an endless list of things I didn't even know to be frightened about.

Jump ahead very rapidly to nine months later and it's gone. Done. Where did it go so quickly? I now know the answers to the questions I didn't know to ask. Because of that, I want to dedicate a blog to newly diagnosed people. I know that more of you are reading now. More than anything else, had I asked these questions, no one could have told me the exact personal journey that I was about to take. For me, the biggest challenge of all became a commitment to make it like no one else's experience.  I made it personal.  It takes a bit of adjustment and acceptance, but then my personality and my passions kicked in.

I started to write again. I wrote about everything. I want to look back on this year and remember details. I want to remember exactly what I was thinking on any given day. And by writing, I could see the progression of my thoughts and my attempt to direct them onto positive paths. I took lots of photos. I posed in every wig I could find. I hugged a lot of people in pictures. I put them into three binders filled with artwork and fun colorful drawings. (Notice I avoid the word "scrapbook.") More than anything, I laughed.

When I was beginning my chemo, I had three types of questions . . . those I was afraid to ask fearing the answers, those I didn't know to ask, and those I was embarrassed to ask. I know now that all of them were valid and real, so I want to emphasize that there are no bad questions.

Questions I was afraid to ask:

Will I get really sick? Can I take care of myself or will I need help from others? Will I be able to work at all? Will I probably have to go to the hospital often? How do I tell my family? And of course, will I die?

Questions I didn't know to ask:

What are some of the side affects of the chemo? Are there foods I cannot eat?  Foods I should eat? How do we monitor my blood, which is so important for continuing the chemo? What does my insurance not cover? How do I apply for disability if I am eligible?

Questions I was embarrassed to ask:

What is chemotherapy and how is it administered? Will I lose my hair? How will people treat me? Will I get skinny? Will I look like I have cancer? (Mostly all the ego and self image questions.)

There's not enough space here to answer them, and many are personal and individual, so I won't begin. However if there is anyone who would like to discuss them, please contact me. It's why Billy blogs. I can assure you, my answers will lift your spirits.  

Your spirit is the best medicine you have.

The Kidses

Cecelia Ann, Eileen Marie, William Joseph, Kathleen Monica, and Kevin James

Alias, Cece, Leenie Girl, Billy Boy, Peanut, and Kevie

Aren't we adorable?  Granted this was 45 years ago, but hey, we're still adorable.

I'm blessed with the best siblings in the world.  We have always been very close. One big reason for that is probably because our mother died when we were young; just about exactly when these photos were taken. The twins (Kevin and Kathy) were only 5 years old. Cece, at age 11, took over many of the household responsibilities. Someone said to me recently that I should be thankful in some ways that my mother died because I don't have to deal with all the difficulties that every mother inflicts. I couldn't disagree more.  I think of Cece in many ways as a mother, and she is a saint on earth. If I had to, I don't think I could come up with one flaw. (OK, maybe those glasses in the photo.)

There is an old saying that you don't really know someone until you share a vacation or an inheritance with them. I've done both with my siblings and always feel even closer afterwards.

My father buried three wives. (It was difficult finding him dates after that.) He survived his last wife by a year, and died just two years ago. Of course we miss him a lot. He had been both a father and a mother throughout our childhood. He went to Cece's campfire girls' fashion show, and he was the only father in my cub scouts mothers' club. He cooked us pancakes in the morning and almost always brought a topic of discussion to the dinner table.

One topic that came up often was, "tomorrow I want you to come to the dinner table and tell me something that you perceived." I could never distinguish between something I saw and something I perceived.  I clearly remember saying once that I perceived the statue of St. Catherine in the hallway at school.  "No," Dad said, "You saw that statue.  What did you perceive about it?"

"I perceived that she looked confused why she was holding lilies."

"Very good!" Dad exclaimed.  I was so proud. Proud enough that I never forgot it. But I still couldn't figure out why I didn't just SEE that St. Catherine was confused.  Today I understand it completely. What we see and what we perceive are critical to our personalities. Thanks Dad.

There must have been thousands of moments like that one that I don't remember. They are what made us five "kidses" (as Dad called us) who we are today, and why we are blessed to have each other. At least that's how I perceive it.

Oh Well

A few years ago, I agreed to help produce a segment of the Los Angeles gay pride parade for an AIDS organization.  Our concept was based around giant 12-foot letters on casters spelling L I F E. About two blocks into the parade, the F fell over because it was so top heavy, and it broke into a million pieces.

Everyone enthusiastically wanted to go on, but there was something very wrong about marching in a parade representing an AIDS organization with the word L I E.  I quickly made a decision to pull us out of the parade, and I spent the next two hours sitting on the bottom of the L and waiting for a truck to come get us.  Mostly I was happy to be out of the parade, but saddened that all that hard work was wasted.

I could make many deep-thought analogies here about "rolling down the street of LIFE," or marching to a different bummer, but I won't go there.  Instead, I just want to make the point that sometimes we start out doing things that are very intensely important, and they only end up being a funny story.  I call it the "Oh well" syndrome.  As an event producer, the "Oh well" syndrome happens often.  Best laid plans don't always work.  In an event, just like life in general, the one thing you can count on is that something will go wrong.  So when it does, let it roll off your shoulders and simply say "Oh well" and move on.

Almost every wedding has a story of something that went wrong.  Ironically, that always becomes the best story from the wedding.

"Move on" is a difficult concept for some.  They tend to get stuck in the drama of the pain.  They talk about it constantly, they sue, they write a book.  Not to say that some causes are not worthy of pursuit and extremely justified.  I applaud those who fight for an injustice.  But wallowing in the misery and agony of something that just happened out of misfortune hurts no one except the person who chooses to be in the pain.

I still like referring to the parade incident as "the F word" because that is the first thing we want to shout when something like that goes wrong.  Dragging my cancer back into this (after all, that's what this blog is about), my F fell down and smashed, but so what.  This time I'm getting back into the parade of L I F E and I can't wait to start marching again!

Oh, The Drama

Lymph Notes originally began as my personal journal. That journal is now three volumes of photos, artwork, and writings from the past eight months. I decided that my last entry would be the day that I was clear of cancer. And so Friday I wrote my last line . . . "Good night, sweet cancer, good night."

When I wrote it, I was extremely sad, but when I tried to tell friends about it that night, I burst out laughing at the drama of it all. It is a perfect representation of my emotions this week. I can go from joy to sadness faster than a politician can change his views on government intervention.

I'm accepting that it's ok for me to be depressed that this experience is ending. It's been an incredible journey. I have opened my eyes to so many new perspectives, and I have very much enjoyed the generous affection of others. I don't want to ignore the pain that was part of it, but as I have written before, that became a big part of the adventure, giving me even more of a chance to see what I could tackle, and learn a lot about the world of cancer. And besides that, I had always wondered what I would look like bald.

Why have I learned so much this year? An article in this month's "Fast Company" magazine says that we are all creatures of habit. Our minds are programmed to make assumptions based on our experience and how we have always perceived the world.

The article states that "only when the brain is confronted with stimuli that it has not encountered before does it start to reorganize perception. The surest way to provoke the imagination then, is to seek out environments you have no experience with."

Famous glass artist Dale Chihuly didn't discover his sculptural genius until a car accident led to the loss of an eye and forced him to perceive depth in a different way. Walt Disney didn't create animation until he saw his drawings projected on a screen in a theater.

In my case (not to put me in the category of Walt or Dale), the perception of life from a positive platform came from a confrontation with sudden illness. I now see so many things, and appreciate them, in a different light.  Perhaps that is the reason it is so difficult for me to bid farewell.  It's like saying a final goodbye to your favorite teacher. The lessons will not be forgotten, but the friend and mentor must now be in your past.

Life goes on. A new chapter will open soon, but as I pass from this chapter, I am saddened to say good night, sweet cancer, good night.

LIFE

It is September 18th, 2008.  Today I found out that I am cancer free.  I thanked the doctor, hung up the phone, and burst into tears. I didn't really think it was going to be that big of a deal, but evidently I had an enormous amount of emotion inside that I had hidden somewhere in the Disney dust.

I sent an email to close friends and family, and unexpectedly was overwhelmed with the response. One person after another left me a message while crying.  After a pause to clear her throat, my sister said, "This is a moment I will never forget."

A few other responses:

"My head is spinning from happiness.  Next time, just get me a puppy!"

"I'm so happy, I'm going to buy you a comb."

"Now let's hope you don't get hit by a truck."

(The sicker they are, the more I love them.)

Just when I think I have allowed myself to accept love, I am startled by this reaction from people. I am embarrassed by it.  But I laughed and cried while I read the emails and listened to the messages . . . over and over.  And I will do it again several times tomorrow.

The first week I moved to Los Angeles, I was visiting a friend in his apartment building. As I entered the lobby, there was an elderly woman moving out. Her family was moving her back to the east coast. I chatted with her and she told me, "It's now time for someone else to begin a life in Hollywood."  There I was.  We hugged and never saw each other again, however I have never forgotten the power of that moment.

Last night I had a long conversation on the phone with someone who discovered my blog and contacted me.  He recently received his diagnosis and began chemotherapy today for lymphoma. This came the night before my good news. "It's now time for someone else to begin a life in Hollywood." More than anything else, I assured him that the journey is everything that you make of it. It can be as rewarding as you choose. It can be unpleasant, but life changing. Interestingly, all the things I was told by the woman in the lobby.

Before our conversation last night, I wrote down all the things I wanted to say to him. But there were no words that I could think of to convey the spirit that I wanted to bestow on him. How could I tell him to enjoy the journey? Cherish those peaceful times when you are alone with your thoughts. Or how could I even begin to express the abundance of love he will feel if he allows it? And most of all, there is no appropriate way to say to him, "This can be the most incredible year of your life. Do not miss a moment."

Sean, please know how much I was thinking of you when my doctor called today. It was exactly the time that you were getting your chemo. I hope you can hold in your heart the knowledge that, very soon, you will be getting the same news.

I thank you all. My family. My incredible friends. Those of you who read this blog. You are the ones who fought this cancer.  I was just the one who got to march down the street in the parade.

Calmness and Gratitude

Last night, just before going to sleep, I sat on the edge of my bed in a very serene and contemplative state.  The room was washed in white light from a full moon.  There was a cool breeze blowing in, and the only sound was crickets in the garden.  I have never heard crickets in California. Full moon, breeze, crickets . . . more staged than a movie set.

It was one of my rare unique "cancer moments" where I feel so much at peace.  I wanted to be anxious about my bone marrow extraction scheduled for this morning, but I wasn't.  Instead, I was feeling blessed and grateful.  So what if an eight-inch needle was going to be drilled deep into my hip bone and then the thick marrow sucked out in excruciating pain. Not to worry. There were crickets and moonlight.

I really didn't want to put my head on the pillow.  I was so much enjoying the calm storybook moment. It was such a sad weekend for so many Americans.  Thousands of people devastated and displaced in Texas, and thousands of others who lost their jobs in New York.  This was the perfect moment for me to say a prayer for all of them, and be grateful.

The extraction was fine.  I was in and out in thirty minutes.  And it is so minimal in comparison to the pain that is being felt by all of those suffering such loss.  My heart goes out to all of them.

Thanks Benny

When I worked in Salt Lake City for the Olympics, I had a wonderful, fun friend named Angie. Sadly, as in so many journeys in life, most of us have all scattered across the globe and have lost touch.  But recently Angie and I reconnected via email even though she is now living in Europe.

Angie read my blog to her 4 year old son Benny, and he asked her to comment on the blog with a joke that he hoped would cheer me up.  "Why did the nanna (banana) go to the doctor?  Because he wasn't peeling too well."

I'm not sure that Benny has any clue just how much that did cheer me up.  That innocence, that silly humor, and that love that wants to cheer up someone who is sick, is so incredibly motivating to me. Thank you Benny.  And thank you momma Angie.

I'm peeling so much better.

That Pursuit of Happiness

It is still somewhat of a twisted mystery to me how cancer has made me a happier person. I think that is why I have been doing so much research into what brings us happiness. And why. And how. And who.

I know there are sometimes people who discover my blog because they have just been diagnosed and they are researching on the internet.  I want so badly to reach out to them and offer encouragement. I want this blog to be for them. I stray off subject some days because I love throwing in a few entries that are just silly or humorous.

I try most of the time to come back to meaning and purpose, and for me that is largely based on these last nine months bringing me love, a sense of adventure, and most strongly, happiness.  It is not as much related to the outcome or success of treatments, although that is bright and certainly doesn't hurt, but it is the daily journey that matters most.  I've learned that the key to happiness in most people is recognizing that important fact. It's today, not tomorrow.  Oddly enough, if you want to be happy right now, you can be.  You don't have to make an investment. You don't have to drive to the store. You don't even have to get out of your chair.

I opened the LA Times on Monday morning, a day I wasn't feeling too well, and there was a huge article titled, "C'mon Get Happy." Here are a few of the highlights:

Happiness is becoming a huge research topic.  Slowly, it is increasing in proportion to the study of depression. It is right there in our Declaration of Independence - The pursuit of happiness.

Happy people are more productive at work, learn more in school, get promoted more, are more creative, and are liked more.

Happiness is 50% genetic, 40% intentional, and 10% circumstantial.

Once basic needs are met, the effects of income on happiness get smaller and smaller.  That's because happiness lies in the way you live and look at the world.

If you want to be happy, pursue something else vigorously and happiness will catch up with you.

What else can make us happy?  Gratitude.  Forgiveness.  Savoring positive moments.  Getting involved.  Use what you're best at to participate in a cause that is bigger than yourself.

And very importantly, happiness brings success, not the other way around.

Clowning Around

A friend of mine read my blog yesterday and called to tell me how much he related to the message. A large sign hangs above his desk at work that says, "The beatings will continue until morale improves."

He explained that it is a constant reminder to him that doing the same things day after day, particularly those things that do not bring progress or joy, are as senseless as daily whippings. (He added that the sign also does a little to hamper the complaints of those who work for him.)

And on a completely different and crazy note, a friend found an ad on Craigslist that he shared with me . . . . 

"We need an Adult Drunk Clown who is good at getting drunk and stupid.  No need to do any clown tricks, just hang out and drink a s#*t load.  We will be hopping around to different bars and want a clown to tag along and drink heavily.  He doesn't even need to socialize with anyone, just drink.  This is in Bucktown Ohio, and oh, don't worry, we will purchase all the drinks."

My friend Paula, who happens to live near there, said, "Finally a job I am not overqualified for."

Uncomfortably Comfortable

I hope someday I look back on this particular blog and laugh.

I have become very comfortable in a routine of discomfort.  As ridiculous as that sounds, and is, I am now the perfect display of proof that we are creatures of habit.

For the past several months, I have gone to the hospital every two weeks to spend a day receiving chemotherapy.  I know that I will feel OK for two days and then I'll be sick and exhausted for about three days.  There will be mouth sores and neuropathy starting on day 5, a voice like a Muppet on days 6 and 7, and I won't even get into the clockwork colon calendar.  In such a strange way, it is all OK simply because it is routine.

I equate it to any job.  There are the monthly billings, the whiney clients, the forms and paperwork, and the incompetent people around us.  It all becomes a routine pain in the ass.

Nothing is as much of an absurd example as my last job.  I woke up at 4:00 am every Monday so I could be in my office by 9:00.  That office was in San Francisco and I live in Los Angeles.  It just became habit.  And it was comfortable, in a very uncomfortable way.

I've always said that I don't understand people who stay in a relationship or job where they are abused or terribly unhappy.  I think I do now.  No matter how unhealthy, routine becomes a comfort in its own right.

Fortunately for me, I have no choice but to move on.  And obviously I would never choose to stay in this situation.  But it is amazing how we adapt.  And I now have a much higher level of understanding for those who fear stepping beyond what is uncomfortably comfortable.

Hopefully we learn.  I heard a great quote this morning; "Age teaches us that there is less time to do what matters."  I am going to try to let that sink in and become a motivating transition from this uncomfortable routine.  "What matters" is far more important than simply a new routine.

Wherefore Art Thou?

I heard my friend, Blog

At my door yesterday,

"Can Billy come out?

Can he come out and play?"

No, Billy's been sick

With that same icky tune

But he wants you to know

That he'll be better soon.

He had his last chemo

So this is the end

(Not "The End" in a bad way,

Just the end of the mend.)

For now he needs rest

But no cause for alarm

Very soon he'll be back

With his brilliance and charm.

A new blog will shine.

Hopefully tomorrow.

Because to lose all his friends

Would cause Billy much sorrow.