The Doctor Is In

The majority of people diagnosed with Multiple Myeloma (bone marrow cancer) or Acute Myeloid Leukemia are fifty-five years old or older, as am I.  As a result, we are from a generation who generally hold the people in white coats and are called doctors in very high regard.  I mean, if they are a doctor they must know what they are talking about, right?  And they know everything, don’t they?

Unfortunately this is not always the case.  It isn’t necessarily that your oncologist is a bad doctor, but the new treatments for these cancers are advancing so rapidly that most general oncologists cannot keep up.  They only have so much time in a day between seeing patients and doing paperwork that they can hardly stay up-to-the-minute with all the new info coming out on these cancers.

Unless you are sure that your oncologist is staying current with all the new diagnostic and treatment options, you need to find a doctor that specializes in your type of cancer.  It really is your responsibility to look out for yourself.

A GREAT source of information on everything about Multiple Myeloma is the International Myeloma Foundation (  They have a huge number of support groups across the country.  They also have a hotline where you can get a reference for the specialist nearest to you.

If you are fighting Leukemia, the best organization to find help is the Leukemia and Lymphoma Society (

I cannot stress this enough – make sure you have the best doctor possible working with you.  You have to be assertive about this or you might very well pay the price with your life.  I know that sounds melodramatic, but it is true.  You only get one shot, and you don’t want to waste it with someone who is not well versed in your specific cancer and all the new and ever-changing treatment options.

It Started With a Coffee Table

Thirty-five years ago when Nancy and I got engaged, she pointed out that we didn’t have a coffee table.  When I asked her what kind she wanted, she said a country-style one.

At the time I was working show-to-show as a stage manager.  While I kept busy, I still had some down time.  Back then I was good friends with Bobby Bingham, a very good set designer who was the Resident Set Designer and Scenery Shop Manager for Herb Roger’s La Mirada Theatre.  Bobby also designed many of the sets for the Orange County area dinner theaters.  It never failed that on many a Sunday night when Bobby needed to load-out the scenery for a show and load-in the next show’s set, he would be short-handed with crew to do the work.  Since I usually wasn’t working late on Sunday nights, I would volunteer and give Bobby a hand.

Instead of paying me, I asked Bobby if I could have some of the wood in his scenery shop and work with the tools there.  That is how I built my first piece of furniture – a pine coffee table.  I learned how to make it with all wood joints: mortise & tendons and dowel pins.  Thanks, Bobby!  I know, I know, it’s thirty-five years old and now it really needs to be sanded and refinished. But most of the marks are from where our three kids pulled themselves up to learn to walk and left their teeth marks around the edge.  And there are now teeth marks from our two grand kids, so I just can’t bring myself to sand all of that out.  I guess one of our kids or grand kids will need to do that someday.

Ever since then I have built tons of furniture in my spare time, again using all wood joints and no nails.  Over the years I have inherited and purchased good wood working tools and equipment and now have a pretty respectable shop in my garage.  Beside us, a lot of our family and friends have pieces of furniture that I built.  To me it is more than a hobby, I consider it my therapy.  When I am building a piece of furniture, my pea-sized brain cannot handle thinking about anything else than the task at hand.  So worries about work or cancer all get put on hold.   It is also great that my kids have all worked with me on their own furniture projects.

I just finished building my most recent project, a “big boy” bed for my grandson, Porter.  I am really proud of this piece.  Luckily I have a friend who took the wood I gave him and the designs, then turned the bedposts on his lathe.  At my son and daughter-in-law’s request, I built it out of red oak, but again with all wood joints.  All it needs now are the slats for the mattress.  Oh yeah, and to stain and finish it.  I am going to stain it a darker brown to match the other furniture already in his room. 

The cool thing about this bed is that Porter will have it for the rest of his life and eventually pass it along to his family.  I really, really love that.

What Do You Pray For?

I was raised Catholic and was probably one of the oldest altar boys at our church.  But it was kind of cool because of my seniority my brother Jeff and I got to serve most of the weddings that were held there.  And the altar boys were usually given “tips” for serving so we would ride our bikes home each Saturday afternoon with a pockets full of cash.  Cha-ching!

While today I guess I am a “Fallen-away Catholic” (more on that in a later post), I still feel a fairly strong personal connection with my idea of God and find myself praying most nights.  This was especially true in the hospital during all of those long, quiet nights.

When you have to spend months at a time in a hospital bed messed up on a bunch of different drugs, you experience A LOT of long, quiet nights.  Well, “quiet” if you consider nurses coming in every three hours to check your vital signs to be “quiet.”  Otherwise it is just you and your thoughts.

The funny thing was, even while I was fighting the two cancers I never felt compelled to pray for my healing.  For that I figured what was going to be was what was going to be.  Instead I always found myself asking for strength to be a better person and to set a good example for my kids.

And I got into the habit of saying the Rosary each night.  For those not familiar with the Rosary, it involves praying for five intentions and a lot of Hail Mary’s.  My sister Santina wisely pointed out to me that the repeated Hail Mary’s are basically a form of meditation.  And she’s right.  I began to realize that when I fell into my rhythm, the cadence of the prayer matched the timing of my heart beat.  Pretty neat.  Except for the “now and at the hour of our death” part at the end!

In addition to praying for my family, both immediate and extended, I found myself usually asking for blessings and protection for all the hundreds of people literally around the world who were keeping me in their prayers.  I also was never able to shake the thought about people who were out there dying all alone and afraid, and I would pray for their comfort and peace.  Same thing with families who were dealing with the loss of a loved one and their need for comforting.

And I’d pray for Pope Francis, although I usually found myself asking that he accept the need for women to be treated equal to men in every way and to actively promote that to the world.  And of course for the freaking stupid Church to accept their responsibility for all of the child abuse and make full amends.  And you wonder why I am a “Fallen-away Catholic?”  Sheesh!

So there you go.  That usually managed to keep my quiet nights filled.  And it is now a good habit that I still follow most nights.


So I had a follow-up appointment at the Duke Cancer Institute a few days ago.  It has been a year and four months since my stem cell transplant (using my brother’s cells) to knock out my Leukemia.  I wasn’t expecting any major news and indeed, the doctor was very pleased with my progress.

They did however spring a bone marrow biopsy on me.  Surprise!  That is where they drill into your back hip bone and pull out some marrow for evaluation.  It is the most accurate way they have to test what is actually going on in your bone marrow.  As you can imagine, the procedure is not a lot of fun but I have been through enough of them that it is now somewhat tolerable.  In fact, I joke that I have had enough of those biopsies that they ought to make everyone’s life easier and just install a beer tap back there.

While I haven’t been up nights worrying about a recurrence of my Leukemia, it is always in the back of your mind playing the “what if” game.  Like a Whack-a-Mole game it pops up when you are thinking of other things, usually late at night, and then you can’t ignore the train of thought.  Then you have to work very hard to not let it take off and snowball into a mountain of worry.

So when the nurse from Duke called me yesterday to give me the preliminary results from my biopsy, I fought off a minor anxiety attack and took the call.  Needless to say, I was very happy to hear there is currently no sign of Leukemia or Multiple Myeloma in my bone marrow.  Whew! I knew that was what they were going to say.  Yeah, right!

You know what it feels like to have a really big weight taken off your shoulders?  It is amazing to me how a mental game like this can so greatly affect the way you look at everything.  It is all part of the emotional yo-yo ride you live on when you have cancer.  I think the best answer is to enjoy what we have and make the most out of each day.  I know that sounds corny and over-simplistic, but to me it really is the truth.

Mom and Dad

I am one of eight kids.  Being a father of three I honestly don’t know how Mom and Dad did it.  Well, actually I DO know how they did it (yeesh!) but I am still in awe of them and their ability to have enough energy and love for all of us.  It was like a well that never seemed to run out of water.  Sure, there were plenty of punishments handed out when we went out of line but we knew that our home and our family would always be there for us.

Even though Dad always worked two jobs, he still managed to attend all of my high school football games.  To this day I don’t know how he was able to do that.  And Mom didn’t drive, yet she made it to all of my and my brother’s and sister’s important events.  And at 93 (Dad) and 87 (Mom), they are still on the job setting an example for all of us kids to learn from.

Last week they flew to Moline, IL to be there with all of us to help celebrate my little sister Santina be installed as the Pastor at the Hope United Church of Christ.  It was a great thing and we were all so proud of her.  My brother Kyle asked if that means Santina is now pastorized?  I’m sure the traveling was hard on Dad and Mom, but you wouldn’t know it by watching them.  Again, their love for the family seemed to give them superhuman strength.  I hope I have half that much energy when I get to 93 years old!  Come to think of it, I hope I make it to 93 years old!!

Yesterday our family bonds were shaken again when we heard that my older sister Gina had some sort of a stroke.  Fortunately her husband Rick was nearby and quickly got her into an ambulance and to the hospital.  After a real scare she seems to be coming out of it, slowly but surely.  Thank God!

I will tell you, you are cruising along thinking all is good when you get smacked up the side of your head from out of nowhere.  And what was the first thing anyone did?  Get word out to the family!  I think our extended family is the definition of the term “strength in numbers.”

And it all goes back to the great, loving example set so well by Mom and Dad.  Talk about having a seat reserved for them in heaven!

The Emotional Yo-Yo

As you probably know, in addition to coming down with Multiple Myeloma (bone marrow cancer) sixteen years ago, I won the lottery and got Acute Myeloid Leukemia – likely caused by my Myeloma medication (!!) – a year and seven months ago.  With both cancers I have gone through some pretty tough treatments but I have come out the other end beating all of the odds.  So far.

I guess I am so used to living beyond my expiration date from the Multiple Myeloma that I do not think much about its likely eventual recurrence.  However, the possible recurrence of the Leukemia has been on my mind lately.  I am not obsessing over it and staying up nights sweating, but I do think about it once in a while and to be honest it kind of bums me out.  And with good reason since my odds are not too good.  I have been told it typically recurs with seventy-five percent of patients my age within five years.

But, and there always seems to be a “but” doesn’t there?  But I just learned yesterday from my oncologist and good friend that eighty to ninety percent of those recurrences happen within the first two years after a stem cell transplant.  And I am already one year and four months from my transplant and am currently showing no signs of Leukemia.  Yeaaa, excellent!!!  Just eight more months to go!! Wamp-wamp!!   

I know this routine.  Been there, done that. Many times!  I just need to remind myself not to dwell on it, especially because I can’t do a damn thing to change matters one way or another.  I keep telling myself to truly appreciate what I have and to do my best to be of some help to others.

Onward and upward!!

What Really Counts

I have heard several people who have had cancer say things like “it was the best thing that ever happened to me.” While I tend to cringe when I hear a celebrity state opinions as if they are experts and NO ONE has ever felt and thought as they have, after surviving Multiple Myeloma cancer and Leukemia, I guess I qualify as someone who knows something about these matters.

Unfortunately it really is kind of true.  We normally are so busy living our lives that we rarely think about what makes our lives worth living.  But that is reality, not something to be ashamed of.  It takes a life threatening event to slap us around, grab us by the shirt collar and shake the shit out of us for us to stop and look at our lives.  Very lucky are the few people who did not have to go through this and yet they are tuned in to what really counts.

And what is it that “really counts?”  I would respectfully offer that it is family, friends and community.  Hardly anything revolutionary, but at our core I believe we are here to help others.  While it might be different for each person, I don’t think money, position, work or fame would make the list.

Gee, it sounds simple doesn’t it? Well, you try taking care of your family without money.  And good luck getting money without working for it.  I think it really comes down to making conscious, daily decisions and taking actions that serve others instead of ourselves.  They can be small things, but you will see they add up, including setting good examples for others to follow. 

I believe it was Mother Teresa who espoused this principal of “living a selfless life.”  I think the world would be a far better place if we all tried to be a little bit more like that amazing woman.

Fun Under the Tent

Between 1976 and 1984 I spent seven summers working at the Sacramento Music Circus.  For those of you who don’t know, it is a professional, summer stock in-the-round theater.  While it is now a hard top, back then it was covered by a huge tent.  I worked there as a tent boy – a glorified janitor but I also got to set up, maintain and take down  the large tent – to a Production Assistant to many summers as the Stage Manager/Lighting Designer.  It was like theater summer camp, except we produced top rate musicals every week. 

The Company would rehearse a musical like Oklahoma during the day for a week, while performing Camelot on Monday through Sunday nights that week.  Then on the next Monday we would start rehearsing South Pacific during the day while we performed Camelot at night.  We would do this for eleven to thirteen weeks straight each summer.  Add to it the weather in Sacramento, which can be brutally hot and humid – especially under a tent!  As you can tell by the schedule, we worked our butts off but we still managed to have A LOT of fun.  I still count many of the people I worked with there as some of my best friends.

Onstage with Tab Hunter

In 1976 we were rehearsing our production of Hair.  I was watching the final dress rehearsal when they got to the nude scene.  As the show called for, during the peak of the song (under dim lighting) the cast dropped their robes and sang the end of the song naked.  Then the lights dimmed down to a blackout.  During the blackout I heard Richard call out over the microphone “Okay, I am going to bring the lights back up” to which the cast yelled in panicked voices “No wait, we haven’t got our robes back on yet!”  But you just finished a nude scene? Oh well! I wouldn’t have the nerve to do what they did!

Then during the summer of 1984, it was the same time as the Olympics in LA.  So one night after a show we held our own Music Circus Olympics.  It consisted of a big table on stage with a bunch of solo cups filled with beer.  We divided everyone up into four-person teams, and put one person from each team at the top of each of the four aisles that went from outside, down through the seating area and up onto the round stage.  After playing the Olympic march music, at the starter’s pistol one person from each team ran down to the stage, chugged a beer and then ran up any of the other aisles to tag their teammate who did the same thing.  As you can imagine, chaos quickly ensued, including some staff sitting in the seats that were holding up large cards with scores written on them.  I don’t remember if any team ever completed the task because we were all falling over laughing so much.  I still crack up every time I remember that.

I’ll Keep You in My Prayers

You hear that a lot, along with “sending thoughts and prayers.”  In fact, that has been so over used it has almost become a sad punchline to a bad joke.  But take it from someone who has been there, prayers do have real power.  Not that I think prayers can necessarily make instant, magical things happen.  But they do have power.

Sixteen years ago when I was at Duke having my first stem cell transplant, at one point things started going not very well.  I was getting infections when I didn’t have an immune system to fight them off.  I didn’t want to recognize it at the time, but I really was in a bad situation, even close to death.  They had parked me in the hospital while they were working on me, pumping me full of antibiotics.

That night when all was quiet, I laid awake in my hospital bed and started thinking about all of the people who were praying for me.  The list went from my large family to all of my friends.  I also remembered my friends who were teachers and had told me they were having their young students say prayers for me too.  And the list went on and on.

After a while I started having the feeling like I was at the ocean and had gone out into the water.  You know the point where you are floating in the water and bobbing up and down with the surf?  Like the water is holding you up.  That was the exact thing I was feeling.  I know this sounds very cosmic, herbal and organic, but it was a very real, physical manifestation of the power of all those prayers holding me up.

At that point I decided that I was going to get past those infections and recover, so I dragged myself out of my hospital bed – IV tubes and all – got down on my knees and said a thank you prayer for all of the people who were sending their prayers my way.  And I did recover.  And I will never forget that very real feeling of the prayers that were holding me up.

Heeelllllp – Again!!!!!

I posted this a while ago, but I think it is important enough that it should be repeated for those who haven’t read all of my past posts.

So you have been diagnosed with Multiple Myeloma (bone marrow cancer) or Leukemia.  It is time for a crash course in cancer education.  Also, if you have lost your job due to your treatments, what the hell are you going to do to make ends meet in the bills department?

For information about Multiple Myeloma, you can’t beat:

International Myeloma Foundation: for information and emotional support, including area support groups.

Multiple Myeloma Research Foundation: for information including new drugs that are “in the pipeline”

For information about Leukemia and Lymphoma, the best is:

The Leukemia and Lymphoma Society: for information and support.  They also have some financial assistance programs, which will be addressed below.

Of course, there is also The American Cancer Society: for information and support.

For financial support, you should Google: cancer financial support.  Be prepared, you will get a ton of different listings.  Unfortunately, you will need to slog through each of them to determine if they can apply to you.  Some are cancer type specific and some are geographic area specific, and most require proof of financial need.  You should also ask your oncologist if their office has a person on staff to help you find local sources for financial assistance.  All of this is really a difficult burden on top of dealing with your cancer treatments, but unless you are financially sound, we really don’t have much choice in the matter.  Just keep at it and chase them all down.

Here are some of the organizations that I found who can help with grants and financial support.  Most of them are only able to offer support when they have funds “on hand” which is not always year-round.

The Leukemia and Lymphoma Society:  They have a $500 travel assistance program.  They also have a separate support fund specifically for people with Multiple Myeloma.

Patient Advocate Foundation:  They have a program that will help pay for your co-payment on your medicines.  Be prepared, they ask for a ton of paperwork.

Daniel’s Grace Foundation:  They are a great, all-volunteer organization that serves the Hampton Roads, VA area.  Their mission is “to ease the financial burden of cancer.”  They also have a scholarship program to help student whose lives have been affected by cancer.

Mercy Medical Angels:  Their mission is “to ensure that no one in need is denied medical care because of a lack of transportation.”  In my case, they provided a round trip airfare for my stem cell donor. 

Angel Wheels:  They are “dedicated to providing non-emergency, long-distance ground transportation to financially disadvantaged, ambulatory patients who are traveling for treatment. “  A typical trip supported by Angel Wheels does not exceed 300 miles (one-way), and they do not normally handle trips within a local area or community. Exceptions are made on a case-by-case basis, routinely for cancer patients traveling daily for treatment.  Angel Wheels to Healing utilizes the following resources for assisting patients: Gas cards (provided to help off-set fuel cost for patients), Bus Tickets (Greyhound, Trailways, etc.) and Train Tickets (Amtrak).

Family Reach:  They are a national nonprofit dedicated to alleviating the financial burden of cancer.

The Bone Marrow Foundation:   They provide financial assistance and resources for patients, caregivers and survivors.

Lee’s Friends:  They are a Hampton Roads, VA based organization whose primary mission is “To offer person to person help and needed emotional and practical support to cancer patients and their families who are facing the crisis of diagnosis and treatment of cancer.”

Good Days:  For support and financial assistance.

The Actors Fund:  They can provide some short term support “for everyone in entertainment. “

Also, most pharmaceutical companies have financial assistance programs to help if you cannot afford their drugs.

Patient Resource:  This is a lengthy, but VERY comprehensive list of organizations that provide support.

Don’t despair.  You can do it and find help!  GOOD LUCK!!