These Boots Are Made For Walking

If you are going to have a stem cell transplant – either using your own or donated stem cells – I personally think the best thing you can do to insure a positive outcome and speedy recovery is to get in as good a physical shape as possible pre-transplant.  Then, after the transplant you need to start walking as soon as possible and for as much as possible.

You certainly don’t need to be running a marathon, just be walking at least a mile a day.  As you recover and get stronger, you can gradually increase the distances of your daily walks.  At first, your walks will really wipe you out; but don’t let that stop you!  Keep at it and you will get better and stronger.  Your doctors and nurses will also be encouraging you to do this.  I believe daily walking also reduces the chances of some side effects and infections from your transplant.

At the Duke Cancer Institute and their Adult Bone Marrow Transplant Center where I had both of my stem cell transplants, they have measured that 17 laps up and down the hallway of the transplant wing in the hospital equals a mile.  Twenty days after I received my brother’s stem cells, I was going to be released from the hospital to move to an apartment and then visit the clinic every day for the next two months.  So the night before I was to be discharged from the hospital, they disconnected my IV tube from my catheter.  I was so thrilled at the prospect of getting out of the hospital I was wide awake at 3:00am.  Because it was quiet and I didn’t want to bother anyone, I went into the hallway and shuffled/jogged the mile distance.  Believe me, I could barely move after that, but it was so worth it because it was my way of saying “f*#% you, leukemia!! You are not going to beat me!!”  When my doctor and nurses learned what I did at just twenty days post-transplant, they didn’t know what to say.

Now that it has been fourteen months since my transplant, I have built up to a three mile loop through my neighborhood that I do every morning.  In fact I can now run about 2 ½ miles of it, and walk the rest.  I am certainly not setting any speed records and it really does tire me out, but I can do it!  And you can too!  Just do a little bit each day and keep at it and gradually build it up.  It really does wonders for your mental outlook on everything.

Immune System – Good! Infections – Bad!

Blood and bone marrow cancers and their treatments usually cause issues with your immune system.  Depending on what phase you are in with your treatments, you can have anything from a weakened immune system to literally no immune system at all.  So you have to be super vigilant about not getting infections because they can take off very quickly and before you know it you are in a ton of trouble.

And hospitals are notorious for being places where you can pick up all kinds of infections.  The good news is that most oncology wards in hospitals are very careful about this and take all kinds of preventative steps to keep you safe.

But sometimes we can our own worst enemy.  When I went to the Duke Cancer Institute sixteen years ago for an auto stem cell transplant (using my own stem cells), I never gave a second thought to the fact that I had an ingrown toenail.  Stupid man that I was (am) I had it for a while and I just never bothered to go to the doctor to have it looked at and taken care of.

Well, when I was going through my transplant and they killed off my bone marrow – and my immune system along with it – we couldn’t figure out why I was getting really sick.  I didn’t want to admit it at the time, but it was pretty serious.  Only after a couple of days did I think to ask the doctor if my toenail might have anything to do with it.  The look on his face told me that he would have smacked me, if he could have gotten away with it.  Needless to say they took care of it and my infections cleared up.

But then for several days when the doctors and their interns were making their rounds, I had to listen to the doctor talk about what I had been through so that the interns would learn from my stupidity.  Very embarrassing!

Hellllpppp!!!!!!

So you are 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: myeloma.org/ for information and emotional support, including area support groups.

Multiple Myeloma Foundation: 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: 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: 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 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 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: 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: copays.org/  They have a program that will help pay for your co-payment on your medicines.

Daniel’s Grace Foundation: 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 Angelsmercymedical.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: 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: familyreach.org/  They are a national nonprofit dedicated to alleviating the financial burden of cancer.

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

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

Patient Resource: patientresource.com/Financial_Resources.aspx  This is a lengthy, but VERY comprehensive list of organizations that provide support.  Again, you just need to ge through them one by one to determine if they are a “fit” for you.

The Actors Fund: 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.

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

Any Port in a Storm

For anyone fighting a blood or bone marrow cancer, your treatments will likely include having a port implanted into you.  In two of my cases, the doctors implanted a Hickman Catheter.  You can learn more about them from this good YouTube video: https://www.youtube.com/watch?v=z6dbV8vY1V8

Also: https://en.wikipedia.org/wiki/Hickman_line

It is a long plastic tube that is surgically implanted, usually in your upper chest, and runs into your jugular vein.  Typically it has three ports, or “lumens” that extend from your body and allows medical professionals to either administer medicine, drugs (like chemo) or blood products into you and/or draw blood samples from you.

In another instance for me, they implanted a version of that catheter in the bicep of my arm.

Trust me; you will develop a love-hate relationship with your catheter.  You will love the fact that you will not need to be stuck with needles every day.  That gets really old really fast!  But you will hate having these plastic tubes hanging out of your chest which are a constant reminder that you have freaking cancer and are fighting for your life.  The day they remove your catheter – which is a simple and painless process – is very much a milestone to be celebrated.

The nurses should always be checking your catheter – making sure it is flushed and clean.  In one of my cases, I had the Hickman Catheter in my chest for about seven months.  I guess that was a little long, because I started getting infections that they traced back to the catheter.  So they removed it and put a new one in my collar bone area for the balance of my treatments.  You can’t be too careful about this.  You do NOT want to be getting infections when you have little or no immune system!

I am not a doctor and can only talk about my experiences.  PLEASE do not take my stories as facts for everyone.  Have an honest conversation with your doctor about all of this.

Father of the Year

My career in show business ensured that we never had a dull moment in raising our family.  After I went through twelve years of Catholic schools, we wanted to similarly curse our children so we sent our three kids to St. Norbert Elementary School in Orange, CA.   It is a great school and we are so glad our kids went through it.  I think the best part about the school was that it still had three nuns there: Sister Francis (the Principal), Sister Rose Mary (the First Grade teacher) and Sister Carmel (who I later heard our kids say was teaching them “Spirish” – that was Spanish in her Irish accent).

These were three of the really good nuns.  None of them was taller than four foot six inches or weighed more than ninety pounds.  But they really were lovely ladies who were GREAT with the kids.  How Sister Rose Mary was able to teach thirty first graders with no assistant, and keep them engaged and learning without a ruler to the knuckles is still a mystery to me.

One day when Ryan was in fourth grade and Neal was in first grade, I was in my car in the pickup line for the kids after school.  Well, Sister Rose Mary came hustling over to my passenger side window and very concerned told me in her Irish brogue “Mr. Stava, I need to talk with you.” After asking her what I could do for her she told me “Today Neal picked up a popsicle stick on the playground, rubbed it on the asphalt into a point and said ‘we’re going to have a rum-bull!!’” “What’s a rum-bull, Mr. Stava?”

I had to explain to her that I was producing a production of West Side Story and the kids had come to see it over the weekend and what a rumble was.  I then assured her that Neal would NOT be starting a dance-off gang war with the other first graders on the playground at St. Norbert.  To which she grudgingly replied “Well, alright then Mr. Stava; if you say so.”  Sigh!!

A couple weeks later I am in the pickup line and Sister Rose Mary again came hustling over and said “Mr. Stava, I need to talk with you.” “Today Neal called someone a ‘mensch’.” “What’s a ‘mensch’ Mr. Stava?”  I told her that ‘mensch’ was a Yiddish expression for a standup guy, a good guy.  Then I had to explain to her what “Yiddish” meant.  “Oh, alright then, Mr. Stava – if you say so.”  I don’t think poor Sister Rose Mary quite knew what to do about the Stava kids.

But I loved those nuns!  I don’t think I have ever met a priest who would pass up on a meal, but those nuns would go a week without eating if it was to help the kids.

Learning How to Accept Help

I have always been the kind of guy saying “what can I do for you?”  I always had an over-developed sense of responsibility.  Helping coach the high school football team the year after I graduated from high school myself.  Stage managing professional productions and being responsible for the operations of very expensive shows starting when I was twenty years old.  Managing and fundraising for several theater companies and helping keep them open (when some of them probably should have closed!) to ensure serving their communities and providing work for stage artists.  And of course for my family.

As a result, it was very, very hard for me to learn to accept another person’s offer to help me.  Maybe it is because I am a guy, or it was my ego, my pride or just my deep, practically crushing feelings of insecurity.  “If I accepted someone’s help, then maybe I was a lesser person and not worthy of their caring – or even their love??”  Ooouuch, it hurts to say that!

These issues came home to roost with me sixteen years ago when I started my fight with Multiple Myeloma.  There is nothing like a cancer diagnosis to make you realize you can’t do everything by yourself.  My initial step in dealing with this emotional roadblock was my rationalization that by accepting someone’s help, I was giving something back to them.  That sounds nice and might be true to some degree and it “worked” for a little while, but I came to realize the plain and simple fact that I needed help. And there was no getting around it and no shame in it.

Even things like being so wiped out that I couldn’t drive myself for many months at a time.  And believe me, being a Southern California guy where you practically get in the car just to drive to the bathroom; it is a big deal to learn to ride in the passenger seat.  Thank God for Nancy and my family and their patience with me while I came to learn my new reality.

And that is the simple truth – you can’t do it by yourself.  You need to accept and be grateful for help.

Jim

Jim Ahern was one of my very good friends.  He was a great, big-hearted funny guy.  We grew up together in Anaheim, CA – at both St. Anthony Claret elementary school and Servite High School and for several years thereafter.  During our first couple of years at Servite, Jim, me and few other guys would meet each morning and ride our ten speed bikes the four miles from home to school.  Many, many nights during high school and the years afterward, Jim would come over to my house and we would shoot pool on the really cool table Dad had put together in our garage.  We would laugh and talk all night, solving all of the matters that seemed SO important at the time.

Tragically, when Jim was thirty he died in a car crash along with his fiancée, Kathy Faley.  It was really, really terrible.  A few years ago I was on the phone with another friend from that time and we were reminiscing about Jim, what a great guy he was and how much we still miss him.  My friend reminded me of when Jim was starting out as a surveyor up in the hills of Orange County; he came across a wounded red tail hawk.  Somehow Jim managed to get the bird in a crate, bring it home, nurse it back to health and eventually released it back into the wild.

My friend and I remembered that all during the burial service for Jim and Kathy at a cemetery in the hills of Orange, there was a hawk circling overhead.  When their caskets were eventually lowered into the ground, the hawk soared off out of sight.  I still get goosebumps thinking about that.

A couple days later after talking with my friend, I was out for my morning run.  My usual path takes me through a neighborhood with a lot of tall pine trees.  I came around a corner and saw a bird standing in the middle of the road.  As I approached it just kind of looked at me, so I clapped my hands a couple times to scare it off.  It just calmly hopped a few feet over to let me pass.  A little bit further along I realized it was a hawk and I turned around in time to see it fly away.

Then it struck me like a lightning bolt what had just happened.  Now, the older I get, the less I believe in coincidences.  I am totally comfortable with the notion that Jim just wanted to remind me that he is still looking out for me.  And how lucky are we to have these kinds of experiences to remind us of these truths.  Thank you, Jim!

Dex

Dexamethasone – or Decadron, or commonly known as Dex – is a very powerful steroid usually prescribed to folks fighting blood cancers.  It is normally prescribed in tandem with an other cancer fighting drug and it seems to act as a “force multiplier” to help make the other drug more effective.

Look it up on Web MD or on the internet:

https://www.webmd.com/drugs/2/drug-1027-5021/dexamethasone-oral/dexamethasone-oral/details

Don’t let the small pill size deceive you; it packs a heck of a punch.  If/when your doctor prescribes this to you BE SURE to have a detailed conversation about side effects so you know what to expect.  I don’t know why some doctors don’t do this better.  But trust me on this – Dex can MESS YOU UP.  It will give you mood swings like crazy and if you are not careful you will find yourself snapping at your care giver, which is NOT a good thing.  It can also make your face swell up like a balloon in the Macy’s Day Parade.  And it can mess up your sleep.  “But don’t worry; we can give you another drug to help with that.”  I know they mean well, but sometimes you will feel like a witch’s cauldron bubbling over with all kinds of poisonous drugs and medicines.

On that blessed day when you eventually can go off Dex, your doctor should gradually taper the dosage levels down. Whew!

It All Started in a Corn Field in Iowa

Well, not quite, but almost.  Mom was from a farm in the small town of Missouri Valley, Iowa and Dad was from a tiny town named Lodge Pole, Nebraska.  They met at the University of Iowa.  I am the fourth of eight children (more about that in another post).

When it was time for me to be born, the family was living in Los Angeles where Dad worked at an aerospace factory.  Then Dad got a great job offer to play drums with a touring big band, which was his REAL profession.  So they scraped together all the money they had and sent Mom, Bruce, Randy and Gina on the train back to Iowa so Mom could be with her family when I was born.

Well, in true show business fashion at the last minute Dad’s touring job was cancelled – bah-dump-bah.  This stranded Mom in Iowa and Dad in LA, working to put together enough money to bring everyone back home.  As a result I was born at the hospital in Council Bluffs, Iowa.  Eventually, Dad was able to bring us all back and be reunited in LA.

Several years later after all eight of us kids were born and we were going back to Iowa for my aunt’s wedding, Dad’s hilarious idea was for Mom to dress like a nun to garner sympathy on the train.  It didn’t work.

I still have such great memories of my grandparent’s farm in Iowa.  I’m sure it’s because I was just a kid, but the corn fields were incredibly tall and they seemed to stretch on forever.  Coming from Orange County we had never experienced something like that and we always had the best time when we visited.

What Are the Odds of That?

When I was diagnosed with stage III Multiple Myeloma cancer at age 45, I was told that I would be lucky to get three years. Wow! They said at that time there is no cure for Multiple Myeloma, just treatments to extend your life.  BUT many great people and organizations are working like crazy to change that, so time is a very good thing.

After I recovered from the initial shock I came to realize that I needed to focus on what I could control in the near term and not dwell on long term matters.  Naturally, I got my affairs in order but I threw myself into living daily, getting into the best shape possible and my treatments.  I would be lying to you if I didn’t admit that the night before each of my next appointments I couldn’t sleep from the anxiety of what I would hear, but I came to accept that was “part of the gig.”

With the advances they have made in treatments, I believe the life expectancy at diagnosis is now five to seven years.  But the doctors are quick to point out these numbers are getting longer every day and many amazing new treatments and possible cures are on the near horizon.  While Las Vegas isn’t as big as it is because the odds are wrong, the good news for me is that I am now clocking in at sixteen years!  There is something very liberating about surviving way past your expiration date.  “Irv – can I have a price check on aisle four and what is the expiration date on that Keith Stava banana?”  While I am not out of the woods, each day is a gift. I know I sound like a Hallmark card, but the feelings are real.

The Acute Myeloid Leukemia diagnosis was a different kettle of fish.  At my diagnosis, I was told that I had about two weeks to start treatments, or it would be game over.  Once we mapped out my treatment plan, I asked “what were the odds.”  I was told that between the difficulties of the treatments and the high chance of infection during treatments, I had about a fifty-fifty chance of surviving the next six months.  Again, wow!  That was basically a flip of the coin.  But like before, I focused on getting into the best shape possible and on my daily treatments.  And they were right, it was very tough.  But the days passed and seven months later I was able to go home just in time for Father’s Day.  I was a walking skeleton at one hundred thirty pounds (I started at one eighty-five), but I was home and in my own bed. Heaven!

Since then I have gained about twenty pounds and am doing really pretty good.  One day I read that the actress Jill Clayburgh had died of the same Leukemia as I had and shortly after that I heard of another person dying from it.  I got to thinking you always hear about people dying from Leukemia, but never about them living after it.  So I went to my trusty computer and Googled life expectancy rates.  I found that for patients over sixty years old, only about twenty-five percent survive for five years or more.  Ouch!

When I asked my doctors about this, one of them said “yeaaah that’s true, but we don’t talk about that much.”  Another was quick to point out those numbers are a bit skewed because many of the people who get that Leukemia are older and cannot withstand the rigors of the treatments.  So again, after beating the odds on Multiple Myeloma, I choose to believe that I will be in the twenty-five percent to survive Leukemia. Believe it and live it!  The good news is that here I am, fourteen months since my stem cell transplant and there is no sign of Leukemia in me. Onward!

I am not a doctor and can only talk about my experiences.  PLEASE do not take my stories as facts for everyone.  Have an honest conversation with your doctor about all of this.