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Living WITHOUT Multiple Myeloma

Posted on November 11 2009 by Pat Killingsworth | 27,784 views

My good friend and fellow patient, Nick van Dyk, from California, recently wrote an essay about his experiences with multiple myeloma. Like me, Nick blogs on a regular basis. He is one of the “young warriors,” working with docs in Little Rock, Arkansas on an aggressive treatment plan designed not just to control myeloma, but to eradicate it–to cure it. I will be speaking to a myeloma support group this evening in Jacksonville, Florida. The main thread of my talk will be to discuss the pros and cons of two different therapy philosophies: The first, and more traditional view–that multiple myeloma can’t be cured, it can only be controlled. The second, and more ambitious and aggressive view–that multiple myeloma can be cured in a number of younger, newly diagnosed patients. Nick has chosen the latter path, which involves using a number of different chemotherapy combinations, as well as tandem stem cell transplants. Nick’s story is a bit long, so I will present it to you in several parts over the next few days. Here in Nick’s Story:

My name is Nick, and I like to think that I used to have Multiple Myeloma.

As I stand here now, I feel pretty darn good. Of course I still take three types of anti-cancer medicine, plus supportive medicine for the side-effects of the cancer therapy, and there’s the issue of this port I’ve had surgically installed in the left side of my chest that is used to draw blood and administer IV medication every week. So I can’t say things are completely back to normal. But the chief inconvenience of Multiple Myeloma – death – is a lot more inconvenient than what I have to deal with. So who am I to complain, right?

Like most, I’ve known people through my life that have died from cancer, including my father. Along with everybody else born relatively early in the last century, he wasn’t aware of the dangers of smoking until he’d been a cigarette smoker for twenty years or more. He quit cigarettes about twenty years before he was diagnosed with cancer – even though he clung to these cheap and smelly Dutch cigars that he used to somehow enjoy. Nonetheless, when he was diagnosed, and when he died a few months later, I still associated his disease with a lifestyle choice. I’ve never been a smoker. I drink in moderation. I use sunscreen. I eat reasonably well, although I’m not one of those people that obsesses about the anti-cancer properties (or lack thereof) of every item in the grocery store. I figured I was making the right decisions.

Eventually, I came to know people that were diagnosed despite leading healthy lifestyles. George Carlin once joked that he was going to write a book called “eat right, exercise, and die anyway.” Prophetic words, I suppose. But even after meeting people who had surprise cancer diagnoses affect them, I still didn’t think it would be something that would happen to me. Of course we never do, right?

When I was diagnosed, I was a 40-year old executive with The Walt Disney Company, with two young children. I kept myself very busy at work, and with some hobbies including golfing (poorly, I should say) and performing in a band in my not-so-copious spare time. In retrospect, the stress of managing my job while trying to tour the country with this band is what I think tweaked my immune system and resulted in this disease. But I was feeling good – things were clicking along pretty well in my career and being sick – seriously sick – was the farthest thing from my mind.

I didn’t really have any symptoms that I recognized as such. One acronym that some in the medical community use is CRAB – calcium, renal failure, anemia and bone problems. I certainly wasn’t aware that I had these things, if indeed I had them. The only thing I noticed was one day while golfing, my shoulder hurt. Enough so that I had to stop playing. I assumed that I had either pulled a muscle or that I was just starting to feel the impact of turning 40. I thought a trip to a masseuse or at worst an orthopedist and some physical therapy would be enough.

I should add that while my father didn’t pass along his predilection for nasty smelling Dutch cigars to me, he did pass along rotten genetics for cholesterol. For which, as it turns out, I’m extremely thankful. I’d run out of my medicine, a type of drug called a statin which I’d been taking for three years or so. Now cholesterol is secreted and processed by the liver, and statins interfere with that chemical process. This is great for the heart, but can be bad for the liver – it’s a little like crop rotation for one’s organs! So as part of the care protocol with statins, I needed to get a blood test to check liver numbers every once in a while to ensure my liver isn’t too irritated. But I HATE having my blood drawn. So I avoided this appointment as long as I could. If you’d told me, frankly, that I’d be getting a disease that would necessitate daily blood draws for eight months, I’d probably have jumped out a window in a tall building.

Anyhow, my primary care doctor told me there was no renewal of my statin prescription without blood work – I hadn’t done any in eighteen months. So I came in, had the blood drawn, and that was that. Or so I thought.

My primary care physician is an awesome doctor – totally overqualified to do a simple blood draw as he’s really an infectious disease specialist these days. And this is one of those things that people that carp about health care costs always say can be done by any old lab cheaper than by a doctor. Well fortunately, I went to an overqualified expensive doctor instead of a lab technician. And he noticed that my total protein was too high. He called me back in for another test – at the time he didn’t tell me what he suspected because he is VERY much an anti-alarmist. But when the protein came back high a second time, he told me it was probably one of two things. He said it could be a condition called MGUS, or it could be something, which he thought was very unlikely by the way, called Multiple Myeloma. He explained, very calmly, that this was a “malignancy of the blood.” That’s a little like saying a severed limb is a malignancy of the skin. But anyhow…

Long story short, he referred me to a hematologist, who told me how unlikely it was that it was Multiple Myeloma since I had no other symptoms, and who went on to say that Myeloma was no big deal. I have a very close friend who is a doctor, and in contrast to my primary care physician, my friend was panicked for me. He said people die of Myeloma within five years. I now know this is not the full story – the full story has a lot more hope. But I mentioned this five-year window to my hematologist and he laughed it off.

That was until two days later, when my bone marrow biopsy came back with 70% plasma cells – meaning the disease was well advanced and it wouldn’t be long before I had other symptoms. All of a sudden, my hematologist was a lot less cavalier about the prognosis for a Myeloma patient than he’d been two days before, when he acted like my friend was crazy.

I’m thankful that this hematologist was very honest with me – he told me that there are a variety of treatment approaches, and he explained that I should seek the opinions of people across the spectrum, including people whose concept of treatment different pretty starkly from his own. He told me that because I was young, it meant my system wasn’t particularly good at fighting off this disease. He expected it would advance quickly, but he thought I might have six months before I needed to begin treatment. This gave me time to research the situation.

And to keep my sanity, I threw myself into researching it. I was going to manage my medical condition to the extent possible, and “fool” myself into thinking this was just like any other project. I learned everything I could about my disease – enough where I could probably pass myself off as a hematologist at a Myeloma conference. I found the prominent doctors from each school of thought, had four in person consults, two other detailed phone consults, and had more scheduled when I decided that I’d learned what I needed to learn.

What I learned, ultimately, is something that few doctors really want to come out and say clearly. But I’ll synthesize it for you: at the fifty thousand foot level, the first choice you and your medical team need to make is whether or not you want to control the disease, or attempt to eradicate it. Your choice depends on a number of things, including your age at diagnosis and your general health. People are living longer and longer with this condition, and while we aren’t at the level of treating it like a chronic disease, it’s no longer the imminent death sentence it once was. If one is in one’s late 70s when one is diagnosed, there’s a reasonable chance of living long enough to die of something other than Myeloma. But at 40 years old, I wasn’t prepared to go that route.

More of Nick’s story to follow tomorrow.
Feel good and keep smiling! Pat

2 Comments For This Post

  1. Terry Long Says:

    I have just been diagnosed with Myeloma. Im 41 years of age. Fit and healthy. Cant and wont let this beat me!

  2. Pat Killingsworth Says:

    Good for you, Terry! You may want to consider Total Therapy for possible cure. See blog posts from last week for info. Good luck!

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