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.

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!!

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!

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.

The Unwanted Visitor Next Door

As part of my initial treatments for Acute Myeloid Leukemia, I had to spend a month in the hospital getting serious chemo to “knock down” the presence of the cancer cells.  This was to buy some time before the cancer came back in order for me to find a matching stem cell donor (turned out to be my brother Kyle) and make the arrangements for a stem cell transplant (again!) at the Duke Cancer Institute.  So I spent the month of December parked in the oncology wing of Sentara Norfolk General Hospital.  It is a great hospital with a terrific staff of nurses and doctors.

About a week into my stay on a quiet night, I heard a lot of sounds coming from the room next door.  Not terribly loud, but enough to notice.  After a while, a young and visibly shaken nurse came into my room to take my vital signs.  I asked if she was okay and if she knew what the sounds were about.  She whispered that the lady next door had just passed.  I now know that nurses aren’t supposed to talk about that kind of thing with other patients, but she was pretty new on her job.  I guess it is not the best thing to be telling patients who are fighting for their lives that their next door neighbor had just died.

After the nurse left I found myself in deep prayer for the soul of the lady next door and for her family mourning her.  All I knew of her was that she was a fellow human being fighting cancer.  And that was more than enough of a connection for me.  As the tears rolled down my face, I realized they were both for her and for my own mortality.

Over the course of the rest of that month, I heard a couple similar things happen in the rooms near mine.  The passage from the bible struck me “even though I walk through the valley of the shadow of death I will fear no evil…”and I realized that I wasn’t just walking through the valley; I had pitched a tent and was camping out there!

But we cannot fear death.  We should only fear not living the best life possible.  And I know in my heart that can be accomplished by caring for and about others as much as we possibly can.

People

One part of fighting Multiple Myeloma (bone marrow cancer) and Leukemia is that it requires you to be parked in hospitals, anywhere from a week to a month or longer at a time.  I realize that I was lucky compared to many who have had to spend much longer periods of time in hospitals, but to me a month became interminable.  Don’t get me wrong, the hospitals were great and the nurses and doctors were terrific.  However, when they have to wake you up every three hours to check your vitals, draw blood, give you medications, etc, etc, etc, hospitals become the least restful place you have ever been.  But I always tried to remember that they were doing their jobs to help me and I tried to show appreciation for it.

I am not a big TV watcher so a “benefit” from all this was that I had lots and lots of quiet time to think.  You won’t appreciate how long a night is until you’ve spent time in a hospital bed.

Early in my theater career, I had an experience where a partnership turned bad and I was forced out of it.  At the time, it crushed me and I was quite angry at my perceived injustice of it all.  I did move on, but I carried the anger inside of me whenever I thought about the situation.  And it was a pretty deep anger.  I know that mine was hardly a unique situation, but that didn’t matter because it happened to me.

On one of those long nights in the hospital I returned to what happened all those years ago.  Then the anger at “how I was done wrong” rose up inside of me again.  But this time, the more I thought about it the more I could see some of the reasons why my ex-partner felt and acted the way he did.  They were still way out of line, but I could see where he was coming from.

And then it struck me that all this time I had been looking at things the wrong way.  I needed to accept that he was who he was, not the way I wanted him to be.  I had the power to let all of it go.  And I did.  At that point it was like the sky opened up over my bed.  I’m sure many of you will say “duhh!!” to this, but to me it was a genuine revelation.

Since then I have tried to remember this and live my life more at peace with myself.  I don’t always succeed in the short term, but I manage to get there over a little time.  I no longer sweat the “small stuff,” I don’t let petty things make me mad, I really try to hold my tongue, and I truly try to appreciate all the good things that I have – which so outweigh any minor inconvenience I am experiencing at the time.  And I honestly feel this has been a critical part in me surviving two cancers.

Don’t Mess With Texas – or Nancy!

I hope everyone who is fighting cancer is a lucky as I am, in that Nancy, my wife of 34 years (at least until she reads this post!) has been by my side as the best caregiver a person could ask for.  I truly, truly love her and for the life of me I can’t figure out why she has put up with me for all these years – but I am so grateful she has! Having someone next you through your treatments is critical.  Unfortunately I’ve seen several marriages break up over cancer diagnosis-es and treatments  because it was much harder than what they expected when they vowed “in sickness and in health, till death do us part.”

But Nancy also has a very tough side and she does not suffer fools lightly.  I still remember when she was pregnant with our third child, she took an AFP test that came back showing that our baby might have spinal biffida or Downs Syndrome.  And it was going to be two weeks before she could have an amnio centesus test to confirm if our baby was going to be alright or not.  Those were the two longest weeks of our lives!  All that time to think about the “what ifs.” It was really, really terrible.

When we finally got in for her amnio centesus appointment, the doctor sat us down in his office and tried to reassure Nancy that “this wasn’t going to hurt.”  Well, Nancy would have none of that.  She snapped back “oh yeah, have you ever had that long needle shoved into your stomach?  You’re just a stupid man, a stupid, stupid man!”  As the doctor’s jaw hit his desk, I shrank down to about two inches tall in the chair next to Nancy.  Fortunately, our daughter Emily was, and still is, healthy and perfect in every way.

To this day I still live by the mantra “Don’t be a stupid man!”  I don’t always succeed, but I try – I am a man after all! I love you, Nancy!

Let’s do this!

It all started in a corn field in Iowa.  Well, not really, but close and we’ll save that for a later post!

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 3, I said “well that’s not so bad, what out of 10?”  To which he replied “no, out of 3.”  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 (more of that in later posts) including a stem cell transplant using my own “cleaned up” stem cells, I am now going on 16 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 gone in two weeks.  Well, guess who dropped everything and went into the hospital the next day?  Merry Christmas!

I’ll talk more about the cause and treatments for my Leukemia in some later posts, but suffice to say it was 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 14 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 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 awhile to move through it and 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.

PS: Please add comments as you feel like it, and subscribe to this blog.  Or you can bookmark the page address and come back later to check out any new posts! Thanks!