Happy Drugs

I attended a dinner last week for the National Lymphoma Research Foundation.  It was primarily two hours of medical updates on trials (tribulations) and treatments.  I have to say that there are very few industries that can conjure up such complicated names for products.  It's almost as if they work hard to create the most difficult names possible for drugs so that no one can remember them.  A couple of my favorite chemotherapy drugs that they discussed are Cyclophosphamide and Mechlorethamine.

Currently I am on, or have recently been on meds including Adriamicin, Vinblastine, Diphenhydramine, Cimetidine, Intelence and Insentress.  

I have always wondered why they don't take note from the technology industry (eBay, iPod, Google, Yahoo, etc.) and give drugs cute snappy names we can remember.  What's wrong with Goober, CureMe, iSick, or MakeMePoop?   Who would forget the name of a medication if they were taking SuzieSuppository?  And that way, instead of guessing which drugs don't interact with each other, we would easily know.  For instance Cheerleader Cheryl would never socialize with Viola Volleyball.  MakeMePoop or SuzieSuppository probably wouldn't be too popular with PartyTime.

At any rate, lurking within all their very complicated vocabulary, I learned some extremely promising news about my cancer.  (Let's bring this all back to me.)  B-Cell Hodgkins Lymphoma is the only cancer that can be cured.  And with a negative PET Scan after the third cycle of chemotherapy, there is a very high chance I will be included in those miracle cases.  

All other cancers can go into remission but not completely eliminated.  That tidbit was well worth the two hours of medical education.  I can only hope that through research, other cancers can eventually be as effectively treatable. 

I have mentioned before that I get so much joy from my garden.  So I thought I would share a few photos.  No sense in hording all the joy.

My sister Kathy arrives on Sunday to stay with me for a month.  How often in our lives do we get the pleasure of taking a month with someone we love from another state?  My older sister, Cece, will be here for several days during the month as well.  I hope they both know how excited I am.  Although I have a list of things to do and places to see, it will be the quiet times reminiscing and looking at old photos that will be so wonderful.

I found a box today labeled, "Photos of my happiest moments." It was amazing to sit and look through them.  I am so incredibly grateful that I made that box several years ago, never realizing

that some day I would have cancer and nothing better to do than sit and relive each of those happy moments.  I took a picture of myself with the photos so that I can add it to the box . . . as one of the happiest.

If you haven't done it, take some time and put together a box like it for yourself.  Some day, many years later, you will find it and laugh and cry and . . . . be humiliated by many of them.

Love and Be Positive

This morning I went to the dentist to have my teeth cleaned -- a recommendation from my oncologist to help fight bacteria.  My dentist asked me a very thought provoking question; "What lesson have you learned from cancer that will change your life permanently?  Say ahhh, and contemplate."  Who knew I would get cleaning and therapy in one session?

The drill, the scraper, and the polish are all gone and I'm still contemplating.  I want to believe that the many tremendous blessings I have learned will not fade to black when I re-enter the work world.

I hope that the biggest lesson I have learned is to continue to think positively.  Without doubt, I have created a new future committed to allowing myself to love and to accept love, or at least to work on developing such an outcome.  That pledge, combined with an ability to think positively, will be the lesson I hope I never forget.  Thank you once again John for your 1989 reminder, "The future is always beautiful if you choose to see it that way."

And I end with another wonderful quote from Scott Hamilton, a cancer survivor, with a similar attitude . . . 

"With what I've endured, if I can be happy, anyone can.  I'm a short, bald, half-neutered, chemo-d, radiated, male figure skater.  What choice do I have but to be optimistic?"

On the Beach

I'm sitting on the beach right now, scribbling on a sand-filled note pad.  I used to always come here when I was depressed, searching for forgiveness and answers.  I usually found it in the rocks.  I would pick one up to represent beauty, one for strength, and one for hope.  I remember the morning that I was reaching for the hope rock and the surf rushed it back out to sea.  Suddenly hope was gone.

Now I have nothing around me except rocks of hope.  I wish the entire world could stop and be here with me right now and feel this peace.

I'm crying tears that are reminiscent of the sadness I had back then, and yet now they are filled with happiness and an enormous swelling of my heart.  I wish I could explain the incredible fullness I feel, together with nature and myself, and a huge appreciation for the gratitude.

The air if very cool but comfortable.  I cannot see another person anywhere on the beach.  The water is loud and silences life behind me to the East.  And as I look to the open and vast West, it is completely and defiantly free.  Not unlike my life right now.  What will come over the horizon is a mystery.  Meanwhile I will enjoy the sand and the sea and everything that comes from it.

Breast Milk and Nuns

I apologize to so many of you who have tried to comment on here.  I realized that I have had my settings to only allow members to comment.  From now on, everyone can speak up.

Now Billy be back to blogging . . . 

Many good friends have offered meals, rides, and many other kind gestures, but one close friend truly takes the cake.  She has offered her breast milk.  Research is showing that human breast milk is healing for certain types of cancer.  After asking my oncologist,  I might just add this to the list of B-12, Alabama mud, biofeedback, reiki, and acupuncture.  One patient reported that it tastes a bit sour, but when mixed into a smoothie . . . . not so bad.  Immediately my head goes to the formation of a new Southern California Smoothie chain of stores.  And I'll open up the comment board to suggestions for a name.

Completely new and unrelated subject . . . 

I have a great aunt who is a Catholic nun and will be turning 90 years old next week.  She is a very special person who has helped me a lot lately.  She and my father were exactly the same age and grew up together.  I asked her at Dad's funeral about her fondest memory of him.  She said laughing and playing in the watermelon patch as children.

Yesterday she sent me the following email.  (Yes, she's 90 and emails me several times a week.)  It sums up everything I have written on this blog.  Sister Aniceta is a cancer survivor and she understands.

"I asked God to give me happiness.

God said, 'No.'

I give you blessings;

Happiness is up to you.

I asked God to spare me pain.

God said, 'No.'

Suffering draws you apart from worldly cares,

and brings you closer to me."

Vanity and Happiness

My good friend Ron told me the other day that his favorite quote is from Glen Close in Dangerous Liaisons:  "Happiness and vanity are incompatible."

I had been telling him how uncomfortable it is for me to go out in public because I feel as though people are staring and it hurts my pride.  Ron reminded me that my blog is all about how happy I am right now.  Gotta love that Glen.  She is always right.

I was telling this to my nurse on Thursday as she was injecting me with chemo.  She said, "I'll inject this happiness into you, it will give you your hair, weight, and color back, and then you can have both."

Also on Thursday, my oncologist gave me some great news.  The PET Scan came back completely negative from cancer.  I still will have the remaining four months of treatments because my bone marrow is still probably infected, but that is not a problem for me, particularly if I stay feeling this well.

I have had so many people send me emails saying that they cried when they heard that news. I am so blessed to have so many wonderful people love me.  I won't forget this as long as I live.

Now here comes a statement that I cannot believe I am going to type . . . . "Am I the only person on this earth who has loved having cancer?"  As I have said on here before, it has generated so many gifts.  The people that have flown to see me, the friends that constantly call to help, the writing, art and photos I have created, and most of all the appreciation for things that matter.  It takes a major force to get us to slow our lives down to this pace and makes us appreciate the smaller things that are so beautiful around us, and IN US.

Most of my family and friends know that I spent much of last year beginning to develop an new company that would design a series of national seminars to help people create second careers.  It's called NEXT.  For whatever reasons, many older adults, particularly Baby Boomers, decide to discover within themselves something that is more important to dedicate their lives towards.  They may be retiring and yet not ready to stop working, or they might want to simply rethink their futures.

This is one of my favorite lines from the business plan, written by one of our Board members:

"Through self discovery, we can learn to reach into our true selves and pull out the notepad of our lives upon which to write our NEXT story.  Everything we ARE can lead us to where we should BE.  If we trust it."

Nothing has become more real for me in these past few months than that statement.  Although our seminars will be one to three days, mine will be eight months.  I am hoping that I as I re-enter the workforce, it can somehow be a sequel to what I have learned.  NEXT will be the perfect opportunity to help others through this experience.

Vain rhymes with pain.  Happiness rhymes with (Sappiness and crappyness?)  Oh well, it started good.

Stress Reduction

Today I did Reiki  I have also done bio feedback, acupuncture, self hypnosis and meditation training.  If someone recommended it, I would probably try a week in a Texas polygamy camp.  I'm not opposed to being very open minded, particularly when it is spiritual in nature.

The Reiki involved flat stones, large bells, fire and water, and his hands strategically placed on my chakras.  It is for stress reduction and healing.  He also said he felt the strong presence of a Jim and a Theodore.  I got home and Googled "Jim & Ted" and got a YouTube video of Big Jim's 'Wanted Ted or Alive' Bikini Bullriding Contest.  So much for stress reduction.

I am a firm believer that we all must stop as often as possible and be calm.  Call it meditation if you dare, but it is vital to our stress reduction to simply take a few deep breaths and remain centered for a few minutes on healing and the total disappearance of stress.  When I took the classes in self hypnosis, I learned that total relaxation is effortless.  It is the absence of effort.  I have always loved that, and it has put me to sleep on many occasions.  

And so this is the Dali Billi bidding you all a very good night's sleep and sweet dreams about the Bikini Bullriders.  

What Brings Me Joy

We all have had those days when nothing seems to go right, and some well-meaning but not very sensitive person, usually older, says, "Well at least you've got your health."  As if the answer to any problem is to make a list of all the more serious problems we might have.  What kind of thinking is that?

It would be so easy (and humorously satisfying) for me to say that to people right now.  Every time someone tells me even the slightest problem, I put on my sad puppy eyes, and jab them that deep cutting offensive "At least you've got your health."  As someone who doesn't have his health right now, I hereby give you permission to respond to anyone who tells you that statement, ". . . And at least I'm not bitter and sick like you."

Now I move up the brain chain to a few things that currently bring me joy.

I used to write a lot.  Although never published or produced, I have written three full books, two stage plays, one screenplay, dozens of short stories, and three small coffee table books.  I did self publish a small book I edited of quotes from my partner's journal that he kept while he was dying of AIDS.  I did that for Randy.  I also created 14 large pieces of art in conjunction with the book, each containing a quote from the book and an object that belonged to him.

I quit writing for the past three years because I became frustrated with the hundreds of hours that I put into all of those projects with no one ever having read them.  That is why this blog brings me joy.  I am writing again.  I am writing for a purpose.  And with the help of the patron saint of lymphoma, maybe someone is reading it.  Let me know.

I get much joy from flowers.  It's a luxury that I allow myself right now because of the healing nature that they offer.  Their color, their smell, their unbelievable intricacies.  I don't know if anything is more gay than that, but I don't care.  I actually have it written in my will, "In lieu of flowers, send more."

I get joy from the intimate one-on-one time I get to spend with each friend and family member who takes me to a chemo session.  In each case, we talk about what matters most in life and we share a bond that will never happen again (I certainly hope).

Cleaning out old files yesterday, I found a list of things that I was proud that I have accomplished in my life.  If you want a little joy, make the list.  You'll surprise yourself.  And you'll surprise yourself with the kinds of things that bring you pride.

And lastly I get joy from this tremendous ability to take a pause in life and appreciate what brings me joy.

Transitions

I have blogged here lately about how we cope with life's speed bumps.  I'll be the first to admit that I know as much about sports as Bush knows about world politics, but I do know that the team that usually wins is the team that is best prepared for whatever their opponents might surprise them with.  The entire idea of athletics is to roll with the punches and when knocked down, get up and fight harder.

I certainly do not mean to make light of tremendous sorrow, for I feel strongly about allowing ourselves time to grieve.  Rather, I am referring to facing the truth that we all will be hit by unexpected hurdles.

I was having a discussion with a friend at dinner the other night who told me he had just attended a conference on career transitioning.  The moderator got up on stage and simply said, "It's over."  He then instructed everyone to go off and write about what that meant.

When they returned, he explained that everything in our lives has a beginning and an end.  He used the example that when we are around eight years old, we look at our toys and don't want to lose them, and yet at the same time, we no longer have an interest in playing with them.  It's over.  Our relationships, homes, and things we are interested in, all come and go.  Our careers, he explained, are subject to the same beginning and end.  We are all creatures of habit, but we must recognize when "it's over."

I have contemplated the mourning process that we must allow for some endings, and the celebrations of others.  When my lymphoma is gone, I will celebrate that "it's over."  And yet I will look back on it as such an enlightening piece of my life.  Moving away from it will be a rewarding, but moving on will be a challenge.

My father taught me that we all have a gift in remembering good times, but can never fully relive the bad times.  Eventually we heal from the pain.  We all have sad days in our lives that we will never forget, but thank God we do not have to experience the severe pain we felt at the time.

Transitions are difficult.  But we all change and hopefully grow.  We eventually move on.  Move up.  And continue to climb the ladder of life.

A Glowing Report?

Tomorrow I have my first progress check, a Pet Scan.  I received instructions for preparation for the scan which tell me to fast for 12 hours and only eat protein tonight.  But this is the part that is the most interesting:

"Patient will expose others to radiation.  Need to stay away for 8 hours after scan.  If there are small children or pregnant women in the home, patient should stay in a separate room and use a separate restroom."

I'm beginning to believe that eight to ten cancer patients on the roof could heat an average American home.

I was planning on hosting a game-night tomorrow night.  I hope we don't play hide 'n seek.  I'll definitely lose.  

One of my most memorable experiences

It's only been three and a half months that I have been spending time with my little friend lymphoma, and yet we have had a few memorable experiences together.

One delightful day in February, we spent 21 hours in the Emergency Room at California Hospital in downtown LA.  I wouldn't want to repeat the experience, but it was a lifetime memory filled with good and not-so-good.  God love my friend Bob for being with me or I could not have survived it.  Amidst the sea of suffering in the third-world waiting room filled with crying, moaning, puking, and fighting, Bob attempted to accomplish a little of his legal practice on his Blackberry, dressed in a starched shirt and tie.  He also munched on a taco from the taco truck parked immediately outside the door.  It was a clashing of culture, and yet Bob was the first to point out that there were some very compassionate and understanding people amongst us who were concerned for me.  I couldn't have gone with a better person.

It was a long 8 hours in that waiting room before I was finally admitted to the ER and got a bed.  A bed in a dark, foul smelling corner, but a bed.  I felt for the 28 others who were serious enough to be in line for a bed, among the dozens of people waiting only for the trauma center.  I was told that many would give up and go home.

The next 13 hours in that bed would prove to be eye opening and enlightening.  What an experience to lay there and be only a small curtain away from the worst traumas of downtown LA.  An elderly woman cried and screamed in pain having fallen down stairs.  An hour later, she couldn't stop vomiting from the morphine.

Stabbing victims, car accidents, and a very detailed and serious vagina crisis in the bed right next to me, all made me feel so lucky to simply have cancer.

And yet, the unbelievable nurses and doctors that deal with this on a daily basis were incredibly down to earth and personable.  They often gathered around my bed and we told stories, shared experiences, laughed and cried.  Granted, by this point I had had an injection of pain medication.

Michelle, Anathea, and Debby sang for me, danced for me, and chatted about life and priorities.  I don't mean to make light of my situation.  There were moments when they had to put in emergency IVs for my blood pressure and eventually I was moved to ICU.  But it all paled in comparison to the human interaction I experienced.  At one point, as I was discussing with Anathea the acceptance of my challenges with lymphoma, she asked me to write a book and title it, "Bring It On, Bitch."  (I learned that ER nurses aren't demure.)

My reason for being in this situation was an extremely low white blood count, and an abscess that had grown slightly larger than Nebraska.  I call it my "infecta-rectum."  Infecta decided to take matters in its own hands around 5:00 am . . . i.e. my water broke, like a flooding of the Missouri River.  Having had a second injection of pain medication by that point, I just pleasantly smiled at the nurses and told them I was giving birth.

As I said, I ended up in ICU for a day, a regular hospital room for three more days, and had surgery on the abscess.  Eventually I was released because when a body is prone to infection, the hospital is the worst place to be.  For the next three weeks, I had a visiting nurse come to my home every day.

If I had to choose Disneyland over the ER, it wouldn't be much of a decision, however I am happy to have experienced both and know that the comparisons are striking . . . long lines, creepy characters, funny stories behind the scenes, and friends like Bob that make the day all worth it.

Don't They Have Vicodin In Purgatory?

Several friends have been having fun with my head, loaning me head pieces . . . everything from Mother Theresa to the Muppets and Munchkins.  As I get a little more comfortable with this blog, I will share a few of the other photos.  My sincere thanks go to Rob, Bob, Doug, Ken, and Tom for giving me a few hearty laughs.

And so I sit in my Paul McCartney hair and contemplate my productivity.  It bugs me.  (Yes, the wig AND the productivity.)  It is very difficult for me to feel as though I am not a contributing member of society, even temporarily with cancer.

I grew up in an extremely hard working family.  Chores, jobs, volunteering, and success. Anything less was lazy.  A voice deep inside my head continues to shout, "Cancer schmanser. Get off your ass and be productive."

My father died about a year and a half ago because he refused to listen to doctors who told him he couldn't walk.  He got out of bed, fell and broke his hip, and died about ten days later.  I'm sure he would not have a single regret that he tried to get up "and get busy."  He knew no other way.

And what about the pain?  Well my grandmother, my father's mother, always said that God gives us pain so that we can suffer for the souls in Purgatory.  Now what part of that statement makes even a remote amount of sense?  Even the Catholic church has said there may not be a Purgatory.  They're keeping Limbo, but the Purgatory "waiting room" has been closed until further notice.  Babies who die without a blessing can now proceed directly to heaven . . . no wait . . . they still go to Limbo.

For the most part, I have found great solace in knowing I can rest in bed as doctors instruct me, and still be productive in other ways.  Writing brings me so much comfort.  I believe the key is a personal balance in recognizing what is necessary for my healing, and what is eating bonbons while watching enough Food Network to get a culinary degree.

And then I start to feel physically good again for a few days and I stress that I should be spending my time helping others.  That's what we do . . . we humans, we Irish Catholics, we twelve steppers.  And I believe that with every ounce of my being.  It is only through helping others that we find our own true happiness.

So I return once again to thanking all of you readers for giving me the opportunity to feel balanced, productive, of-service, and creative.  The only thing that would make it even better would be if they had internet access in Purgatory.

Flying

Beauty seems more beautiful.  Funny seems more funny.  Peace seems more peaceful.

My doctor has warned me that day 4 through day 11 after chemo are the days that the medicine will attack my blood with the most severity.  So I will be much more prone to fatigue, illness, and possible infection.  Today, day 4, I feel it slowly settling in, and yet at this moment, there is a hummingbird on my patio just a few feet away.

As I have said before, this "switch-to-pause" period in my life allows me the chance to see this hummingbird as such a marvel.  I wish I had his energy.  With the speed of those wings, he must have incredible pecs.

I am reading Robert Schimmel's book, "Cancer on $5 A Day, Chemo Not Included."  Although he is very positive throughout the book, this morning I read this. . . 

"I have been knocked down.  Nobody is a bigger fan of having a positive attitude than I am.  Yes, you can.  You have to believe.  You can overcome anything.  Well, yes, you can has at this instant been replaced by no, you can't.  Because sometimes you just can't.  There are practical issues.  And there are fantasy and reality.  You can't be fooled into thinking that anything is possible armed with only a positive attitude.  That may be the definition of insanity."

I absolutely agree with him.  However for me, a positive attitude is not striving for what I can do, or what I want to happen.  It is faith in knowing that what will happen is the best for me.

I don't know where that blessing comes from.  Perhaps it was my father (who always said, "It's a great day to be alive!") combined with my experience.  Possibly it is my 22 years of living with HIV, and surviving the plague when so many didn't.  I don't see death in my near future at all, however if I did, I don't see death as sad.  I have often told friends my philosophy . . . . "If indeed we believe that heaven is the ultimate party, and life on earth is just a stop at 7-Eleven on the way, then I want to get my chips and beer and get to the party."  I'm in no hurry.  The Slurpees are tasty and the crowd is amusing.

I wrote in my journal a few weeks ago that want to maintain my humor and attitude, but sometimes as pain sets in, it is difficult.  I don't switch over to a negative attitude, however I realize and accept that I must take a passive role for awhile and simply focus on my healing.  I'll look for gifts later like a kid looks forward to Christmas.

Most hair is gone now and it's difficult to look in the mirror.  But little baby Billy Bird is waiting to learn to fly again.

Healing.  Christmas.  Flying high.  (Good pecs)

What is it? How Did I Know I Had It?

My main purpose for this blog is the hope that I might help even just one person.  So I'd like to dedicate one serious session to a few of the facts about the disease and my history with it.

Lymphoma is a cancer of the blood and the lymphatic system.  Those two are woven together throughout our entire central body.  Thousands of lymph nodes attached to vessels from our groins to our necks.  Several people have suggested I take up knitting during the day.  It would certainly be a powerful metaphor of those two systems weaving together, but hey.  I also see knitting as a symbol of "the end."  I just imagine a framed, crooked and creepy afghan hanging above my casket as mourners cry, "He made that.  It's his lymphatic system."

OK, Bill.  Focus.  You said you want to help someone.  You're digressing.

For more detailed, and very easy to comprehend, information about lymphoma, a visit to the website for the Lymphoma Research Foundation is well worth it.  I have visited it several times, and will be attending a dinner that they are hosting here in LA on April 23.  The website address is www.lymphoma.org.  In addition to personal and private assistance, they offer podcasts, radio broadcasts, and teleconferences.  It is extremely comprehensive.

And now my personal story.  About two years ago, I began feeling weak whenever I would exert myself.  At the gym I felt dizzy and unusually out of breath.  I mentioned to a close friend that I thought there was something wrong with my blood.  I couldn't even do the treadmill anymore. When I asked my primary physician about it, he told me that if indeed I had anemic blood, it wouldn't show up in my tests for several months.

Sure enough, about six months later, I had anemic blood.  He put me on Procrit, a weekly injection to improve blood counts, but I seemed to still get worse.  I have learned after 22 years of being HIV positive to recognize my own body and its signals.  More than a few times, I have been able to tell the doctors they were wrong.

I have developed a wonderful relationship with my doctor.  He is incredible.  Never in all those years was there a medication that made me undetectable for the HIV virus, and we had a joke that "there's nothing in that black bag for me."  Then unbelievably in June I started two new trial medications that did just that.  I became undetectable.  But my t-cells wouldn't go up and I seemed to continue to get worse in fatigue and lightheadedness.  

Finally in September, 2007, they did minor surgery to remove a lymph node to rule out lymphoma. Sure enough, they removed one of the probably 2% that wasn't infected.  I call it that damn lying lymph node.  Three doctors determined that I just had Immune Reconstitution Syndrome (another painful IRS).  IRS is the body's healing after becoming undetectable.  Once again, I suspected differently and continued to get much worse.  After the surgery, I was very swollen from the waist down and had a lot of pain around the groin area.

Finally in November, after a new round of tests, Dr. Defoto called me one day and said in such a loving voice, "I truly hate to tell you this, but I strongly think you might have lymphoma after all."

It was shocking of course, but at the same time relieving.  He gave me the name of an oncologist and I saw him the next day.

I did CAT scans, PET scans, and even a bone marrow extraction.  They all came back positive.  I think about that day of diagnosis, December 23rd, much like the day that Dad died a year earlier. He was very sick, he was ready to go, and we all knew it was coming.  And yet when it happens, there is no way to be prepared.  It is still shocking and painful.  Once I cried that entire afternoon, I was ready to begin.  Chemo started January 3.

After treatment one, the pain in my groin and all the swelling was completely gone the next day. The doctor told me that already, the worst was gone.

I hope in some way this story will help someone in the same situation.

Thursday, April 3

A few people, in their comments on here, have called me "Egg Head." That comes from Easter morning when my friend Tom painted my head like an egg and put it in an Easter basket.  This photo, my first on the blog, is actually my head.

Today was Chemo #7.  It is becoming routine, and yet still very intense because even though I seem to treat everything lightheartedly, I recognize the seriousness of these treatments.  I go in every two weeks and will do this for six to eight months.  Because I was Stage Four, I might have to go longer.  We are waiting for approval from my insurance to do a Pet Scan to see my progress.

I cannot predict how I will feel in the next few days.  It changes each time, however today my oncologist explained that the medicine will weaken my blood the most on day four through day eleven after each treatment.  That is usually when I feel sick.  However my pain is manageable. Generally fatigue, nausea, neuropathy, mouth sores, and minor other discomforts.  I have said many times that I have such sympathy for the people of this world who suffer from migraines, chronic back pain, or other more severe forms of cancer.  My heart and my love go out to you.

There are so many thoughts I want to write.  But I am anxious tomorrow morning to simply address "what is lymphoma" and "how did I know?"  

WEDNESDAY, APRIL 2

I woke up this morning at 4:00 am worried that my first blog was way too serious.  Look at me.  I have a new passion so strong it wakes me up.  It's not like I'm the first blogger on the block.  It just feels that way.

Very soon, I will begin adding humorous photos from the original Lymph Notes.  Humor is absolutely the most important element in my healing.  OK, humor and chemo.

Which leads me to an idea.  Why not have a Comedy Chemo Night at the Roxi?  Sounds like an opportunity for a new nonprofit, Drip&Laugh . . . dot org.  (I actually went to school with a girl named Dottie Org.  She must have one very confusing URL.)

And now we return to our regular serious programming . . . 

TUESDAY, APRIL 1

I begin my first blog.  Ever.  I have felt compelled to do so since my diagnosis of lymphoma on the day before Christmas.  Immediately, without hesitation, I wanted to scream to the world and announce a new energy that I couldn't explain.  Admittedly, I have always loved challenges, material for a good story, and best of all, attention.  Could it really be true that in my head I was thinking cancer was a perfect combination of them all?  

Quickly reality set in.  Not all challenges have been welcomed ones.  We all have fragments of life that come at us unexpectedly and unplanned.  They interrupt our perfectly planned future.  Often times, the element of life that we must learn to grieve the most is the loss of that assumed future.

That being said, many times my life has proven that my biggest gifts come from my biggest challenges.  So I knew instantly as my oncologist said, "I'm afraid your tests all came back positive for Stage 4 Hodgkins Lymphoma," that somewhere, somehow, there would be a beaming light revealed to me later.

I'd like to start by backing up a few years.

In 1990 I was traveling the country on a bus as a producer of a musical tour.  It was called HeartStrings and benefitted local AIDS charities in each city.  We were loading the bus one early Monday morning in Indianapolis.  I had had a sad and difficult weekend, so I took a short stroll into the park across the street smack in the middle of downtown.  As I walked through the snow, I saw a shiny brass plaque in the center of a gazebo.  I brushed the snow away and read it. "Lilacs will bloom here in the Spring."  What a beautiful metaphor for hope.

I immediately went back to the bus and sat next to my friend John and told him what I had seen. He told me that the future is always beautiful if you choose to see it that way.

For many years after that, John gave me lilacs on my birthday.  John has since passed on, truly one of the most difficult losses of my assumed future, and yet I know he is still telling me that the future is always beautiful.  Lilacs are only available for a few short weeks here in LA and my friend Diane brought me a huge bunch today.

Instantly I was filled with hope.  I have realized just recently that when I am thinking positively, I am thinking about things that are real . . . the love and support of friends and family, the knowledge that my body is healing from the chemotherapy treatments, and most of all, the tremendous opportunity I have, thanks to my illness, to stop the speed of life and take time to reflect on what is important.

In contrast, when I am thinking negative thoughts, I am stressed and worried over what might happen.  It is not real.  Granted that I really have nothing to be stressed over right now.  I'm not naive.  I recognize that everyone else has jobs and families and commitments that cause frustration.  When I get back into the work world, I too will be back gritting my teeth over why someone at work will not do their job the way I WANT IT DONE.

But for now I am blessed to have the beautiful luxury of peace.  Another of the many gifts of cancer.  I focus on discovering more blessings.  They seem to come up every day.  It might be as simple as staying in bed as long as I choose, or it could be as grand as my sister coming to stay with me for an entire month.  The gifts are plentiful.  The pain is minor in comparison.

All this said, I still worry that I am loving the attention and the material for a good story.  When I asked my sister if that was wrong, she answered, "Anything that makes you love having cancer, cannot be too bad for you."

And thus I write.