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: https://www.myeloma.org/ for information and emotional support, including area support groups.

Multiple Myeloma Research Foundation: https://themmrf.org/ for information including new drugs that are “in the pipeline”

For information about Leukemia and Lymphoma, the best is:

The Leukemia and Lymphoma Society: http://www.lls.org/ 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: https://www.cancer.org/ 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: http://www.lls.org/  They have a $500 travel assistance program.  They also have a separate support fund specifically for people with Multiple Myeloma.

Patient Advocate Foundation: https://www.copays.org/  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: http://danielsgrace.org/  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:  http://mercymedical.org/  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: http://angelwheels.org/  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: https://familyreach.org/  They are a national nonprofit dedicated to alleviating the financial burden of cancer.

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

Lee’s Friends: http://leesfriends.org/  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: https://mygooddays.org/  For support and financial assistance.

The Actors Fund: https://actorsfund.org/  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: https://www.patientresource.com/Financial_Resources.aspx  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!!

So How Are You Doing?

Most people don’t know how to deal with someone who has cancer.  I know it is not a matter of they don’t care, because I know they do.  But it is a ton of info to process and empathize with that a person’s life has now been turned upside down.  Even the concept of “life” is now a question.

When my brother Jeff was diagnosed with a Lymphoma, he constantly down-played everything and was very private about the details.  And he seemed to be doing okay for many years, so it was rarely discussed, which was the way Jeff seemed to want it and I was glad to go along with.

When Nancy’s Mom was diagnosed with breast cancer and later with a soft tissue tumor, we were aware of her treatments and the daily ups and downs of her condition.  However, as much as I loved Ann and worried about her, I had my own life to keep living including my job and taking care of my family.  I am kind of embarrassed to say that most times when we got into the details of Ann’s situation, I would become overwhelmed and tune everything out.  I really did care about her, it was just very hard to handle her cancer and everything that went along with it and keeping all the balls up in the air with my own life.  

While I understand all of the different forces that were at work, I did, and still do, feel guilty about how I dealt with Jeff and Ann’s cancers.

So I totally get it now that I am on the other side of the fence.  I know that people really do care when they ask how am I doing.  But now I also understand that they can only process a piece of what I am dealing with, not all of the details.  But that’s okay.  I get it.  Been there, done that. So I am very grateful for any and all concern that my family and friends have for me.

And I thank God for my wife, Nancy, who has lived my daily struggles along side of me, while managing to hold her own life together.

 

The Three Knuckle-Heads

I am one of eight kids – more of that in a later post!  But one of the best parts of being in a large family was the very close bond that I had with my brother Jeff (who was one year younger than me) and my brother Kyle (who was three years younger than me). We spent the first fourteen years of our lives either wrestling and fighting with each other, or running around in circles and getting into some sort of trouble together.  That must be why Mom has a halo and a spot reserved for her in heaven.

But one of the best things in the world, though, was when we were kids, Dad was one of the early musicians working at Disneyland.  This meant that during many days in the summer, Dad and a couple of his friends could get me, Jeff and Kyle into the park for free.  As fourteen thru eleven year olds, it was a dream come true to be able to spend all day together, roaming around Disneyland.  We discovered every nook and cranny of that place.  We never got into trouble, but we became experts on all of the little known spots in the park.

At that time they used tickets to get on the rides, and we had the books with A through E tickets.  E tickets were for the really cool rides like the Haunted Mansion and the A tickets were for the dumb rides like the street trolleys.  Needless to say, by the end of the summers we would have drawers full of unused A tickets.

We had so much fun, especially because we were doing it together.  We always got to stay late enough with Dad to see the fireworks show.  And we had jobs and some money at that point, mostly from paper routes, so we could buy lunch and dinners.  It was especially fun to go to the Golden Horseshoe Revue and watch the show with Dad playing drums in the band and eat a hamburger lunch.

(from left) Jeff, Kyle and me at Disneyland

As we grew up, Jeff, Kyle and my feelings of closeness ebbed and reformed over the years.  Having families of our own tended to keep us apart more than we liked, but that was life.  

Then the real earthquake hit three years ago when Jeff died suddenly from complications arising from his long time fight with Lymphoma.  Yesterday was his birthday and the hole in my heart still hasn’t healed – and probably never will.  He was a very special man, husband and father.  But he was and will always be one of my little brothers and my best friend.

CAR T-Cell Therapy

Over the past several years, immunotherapy — therapies that enlist and strengthen the power of a patient’s immune system to attack tumors — has emerged as what many in the cancer community now call the “fifth pillar” of cancer treatment.  A rapidly emerging immunotherapy approach is called adoptive cell transfer (ACT): collecting and using patients’ own immune cells to treat their cancer. There are several types of ACT but, thus far, the one that has advanced the furthest in clinical development is called CAR T-cell therapy.

See: https://www.cancer.gov/about-cancer/treatment/research/car-t-cells

And: https://labiotech.eu/car-t-therapy-cancer-review/

If you are an adult fighting a Lymphoma or have a child fighting ALL (Leukemia) and your doctor has not yet talked with you about CAR T-Cell therapy, you need to find a doctor who knows about it and can work with you on the potential application of this new treatment option. 

But be careful as you are doing your online research.  While this new therapy is showing great promise, it has also shown some severe side effects, even death, in some of the early trials.  There are several drug companies now pedaling their recently FDA-approved drugs that fall into this category of treatments.  Of course they are competing for your business and at $373,000 to $475,000 (currently) per treatment, there is a high incentive for them to get you to buy their treatments. 

I guess this is why it feels a bit like the online Wild-Wild West when I start googling about CAR T-cell therapy.  You will find a ton of links, but you have to work very hard to separate online ads and info posted by pharmaceutical companies from info posted by legitimate medical sources.  And as the potential for these new therapies to be used as treatments for Leukemia and Multiple Myeloma are developed, it will only become more confusing.

The best solution is to find a doctor and/or treatment center that is very knowledgeable about these new therapies.  But make no mistake about it, CAR T-cell therapy is a very exciting new tool in the fight – and possible cure – against blood and bone marrow cancers.  And that is definitely something to pay attention to!

The Gift That Keeps On Giving

Multiple Myeloma is a “hard to figure out” cancer.  It is a cancer of the bone marrow that will take over your marrow and crowd out its ability to produce platelets and red and white blood cells. In a small percent of cases, it can be caused by a defect in your chromosomes which makes it hereditary.  Otherwise, they do not know what causes it.

I have heard some people blame over-exposure to petroleum chemicals, while others say over-exposure to wood working saw dust (I assume from cutting up plywood and other chemically-joined wood products) can be the cause.  But nothing definitive has been shown to prove any of this.  And stupid me thinks that if these were the causes, why aren’t all gas station attendants or carpenters affected with Multiple Myeloma?  I guess those of us who get it are just the “lucky” ones.

There are five subsets of Multiple Myeloma and two types of light chains which they produce in your blood – called kappa and lambda.  My Myeloma (which always reminds me of the Knack’s song My Sharona!) did a very strange thing when it came back on me three years ago, my light chains changed from lambda to kappa.  Very weird!  I am told this can happen in about five percent of the people with Multiple Myeloma.  Again, I guess I won the lottery.  Maybe I should be buying more Lotto tickets!

Another word of warning: sixteen years ago when I was initially being treated for my Multiple Myeloma,  in their efforts to reduce the level of cancer so I could have an auto-stem cell transplant they gave me a combination of drugs that included platinum.  Well, it did a terrible number on my kidneys.  I eventually recovered but my kidneys have been compromised ever since.  I don’t know if they prescribe that anymore, but keep this in mind and talk with your doctor about it if you hear they want to give you a drug with platinum in it.

Something to know about Multiple Myeloma is that even if your initial treatments are successful at eliminating its presence, it is highly likely that it will eventually come back on you.  They call this a recurrence.  The thing to remember is this is very likely to happen to you, and you should not panic when it does happen.  It does not mean this is the end of the line.  It means you and your doctor need to decide on the next treatment option – of which there are many! – to throw at it to knock it back down.  And then again and again as you work down the list of treatment options and keep buying time.  And hopefully before we run out of options they will have discovered a cure.  Please God!

See You In Thirty Days

Since it appears that many people new to my blog have not read all of my previous posts (shocking, I know!) I thought it would be appropriate to re-post my original thoughts on why I am writing this blog and the source of the title.

In 2002, a few days after my 45th birthday, I was diagnosed with Multiple Myeloma (bone marrow cancer).  Happy Birthday!  When I got the phone call from my oncologist informing me of the diagnosis, I had learned just enough about Myeloma to ask “what stage was it?”  When he told me it was stage three, I said “well that’s not so bad, what out of ten?”  To which he replied “no, out of three.”  Well, I thought that was hilarious and cracked myself up.  I think that was the point that I became good friends with my oncologist.

Multiple Myeloma is not a particularly cheery cancer.  It is a terminal cancer with no known cure – YET!  At the time I was told that I would be lucky to live three years.  After some pretty intense treatments including a stem cell transplant using my own “cleaned up” stem cells, I am now going on sixteen years being pretty much Myeloma-free.  And for the most part they have been GREAT years.

That is, except for the year and a half starting on November 30, 2016 when my oncologist informed me that I had a full blown case of Acute Myeloid Leukemia.  He told me I had to go into the hospital the next day where I would be for a month starting my intense treatments.  I said “Come on, really? Drop everything and go in for the month of December?”  He told me that if I didn’t, I would be dead in two weeks.  Well, guess who dropped everything and went into the hospital the next day?  Merrrrry Christmas!

My Leukemia treatments were a heck of a lot tougher than my Myeloma treatments.  It included another stem cell transplant, this time using my brother Kyle’s donated stem cells (love that Kyle!!!) and a much longer and tougher recovery period.  The good news is I am now fifteen months post-transplant and at this point there are no signs of Leukemia in me!  While they are all very happy, I don’t think my doctors quite know what to do with me.

Anyway, as most cancer patients who are undergoing treatments know, “See you in thirty days” is usually the time between doctor appointments.  You have thirty days to worry about if the other shoe is going to drop, or you can try to live your life.  Learning how to live your life in thirty day increments is a process and it takes a while to get to the point where you can accept your situation and strive to make the best of it.

Hopefully my experiences can be an encouragement to others and my crazy life can add a few laughs along the way.

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