It was a wonderful week in northern California, visiting family and friends and eating a lot of good food and getting those last few lazy days in before I return to work...in less than 12 hours! :O
I was thinking of what to post to mark the one-year point, other than my brief observation on the actual date. I was speaking with a company that is organizing a patient outreach program for Takeda Oncology (formerly Millenium Pharmaceuticals), the manufacturer of Velcade. I was going to be part of this program but the schedule just didn't work out. I did, however, prepare a speech that I would have used were I asked to speak to patient, clinicians, etc. about Myeloma. And it occurs to me that this little speech covers a lot of ground in the same way that a full reflection on the last year would...in terms of what I've learned, for example.
So without further ado, here it is:
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 – elevated 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. 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 tall window.
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 healthcare 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 cleary. 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.
At any rate, I did learn that it’s almost impossible to find two physicians that agree on precisely how to treat the disease. The only thing that they agree upon, almost universally, is to avoid looking at the Internet for Myeloma information. It’s all extremely bleak, because it is backward-looking in large part. Now I couldn’t completely force myself to avoid it, but I did take it with a grain of salt. I used the Internet to help me create a “decision tree” of treatment alternatives, and I used the first couple of consults to learn about the disease, and the rest of them to help hone my decision tree.
Ultimately, my decision was to go for the most aggressive treatment possible with the intent of eradicating the disease. Many people feel it’s not possible to do that. My doctor disagrees – violently, actually – with those who say it can’t be done. I’m told there are raucous exchanges, as these things go, at hematology conferences on this topic. And knowing my doctor as I do, I’m sure he gives as good as he gets.
I started treatment none too soon. I went from Stage I disease at diagnosis to the point where I had four broken vertebrae in my back, early stage renal failure, high calcium numbers and early signs of anemia. The CRAB showed up, all right, and it was beating me up pretty bad!
I spent about six months in active therapy, which included four courses of chemotherapy with multiple agents, two consecutive stem cell transplants, and additional therapy along the way. I achieved what my doctor calls “very profound complete remission” in the last month of this primary therapy. Of course the trick is staying in remission – and for that I’m on this three-drug cocktail for the next three years, with the goal of making my system so unfriendly for Myeloma that the last of the little buggers gives up the ghost.
So right now, I’m exactly where I hoped to be. I achieved the best outcome from therapy that can be measured at this point, and the side effects of treatment weren’t really that big a deal. I mean I suppose I could complain about the exhaustion, the hair loss, and whathaveyou but part of what I brought to this battle was a “damn the torpedoes, full speed ahead” positivity. Every time I did something that hurt or made me feel sick, I envisioned that it was killing a hell of a lot more cancer cells than it was healthy ones. I could take it better than the cancer could. So every injection was a “take that, cancer!” moment. I didn’t stress about every little thing that could go wrong, every little side effect, etc. I had exhaustively researched the potential serious impacts of the medications I would be receiving – and I questioned my doctor (and others) very directly about these potential problems. But once those questions were answered, I didn’t really look back. And I never really wavered in this approach, other than a brief period of concern when I hadn’t achieved complete remission after my second transplant. But again, it was part of the program – I was still seeing the impact of the first transplant long after my second transplant was done.
Now, my life is fundamentally the same as it was before I got sick, with the exception of these weekly doctor’s visits and the pills I need to take. But again, I don’t dwell on that. It’s simply something that has to be done. I didn’t ask for this diagnosis, and I’ve had to make some concessions to the disease, but treating these things as anything other than matter-of-fact things that just have to be dealt with, in my opinion, yields too much to the cancer. I got sick. Very sick. I chose a path to get better, and that path involves some things that healthy people don’t have to do. Oh well. It is what it is. I’m not going to let it dictate my life.
Consequently, I don’t feel like I’m living with Multiple Myeloma. I’m living without it, and taking steps to hopefully keep it away forever.
And here, I must note, that I’m one of the lucky ones. There are 15% of patients who don’t respond well to any kind of current therapy, and there are more who are allergic to one or more of the medications that I am on to be in maintenance. There are others who didn’t have the good fortune to be diagnosed as I did – most people learn they have this disease when they go to the ER with a sudden broken bone. And the on-staff hematologist probably starts them on whatever protocol they believe is the right thing to do, even though they may not even be a Myeloma specialist. And if they’re not lucky, these patients are treated sub-optimally.
There are a few things from my experience, though, that I think can serve just about anybody facing this diagnosis. So if I can leave you with a few key learnings from my own situation, I’d summarize them as follows.
1. This is an individual disease. There are many subtypes, and everybody’s physiology is different depending on the disease. Just as everybody’s situation is different depending on how and when they are diagnosed, what stage of their life they are in, how healthy they may be, and ultimately whether they want to attempt to control the disease or kill it. There is a right answer for me, but the right answer for you may be different. Recognize that you are your own best advocate, and take ownership of your disease. Advice is great, but ultimately the choice is yours.
2. Learn everything you can. Now we’re all wired differently, and not everybody necessarily has my tolerance for data or my control issues that manifested in me wanting to know every last detail. But I urge you to learn as much as you can, about the disease, about the treatment alternatives, about your doctor and his or her approach, etc.
3. Once you’re educated, pick a doctor – who MUST specialize in Myeloma -- and develop a personal relationship with him or her. Myeloma specialists are busy, and in demand. It’s also not unheard of for some to have healthy egos – and frankly, the accomplished ones deserve it. You want access to these doctors, and you want them to be emotionally invested in your well-being, to the extent possible. Some doctor’s personalities are challenging, and some are more receptive to the notion of developing a richer relationship with a patient than others. But in my case, for example, I consider my doctor and his wife to be family friends now.
4. Once you’ve picked your doctor, TRUST your doctor. As I said, there’s no one right answer. But you’ll drive yourself crazy if you second-guess everything. Do your research up-front, make your decision, and stick with the program. This is easy to say and hard to do – I faltered, but I only did it once, and now I realize I was a little silly to do so.
5. Lastly, and most importantly, be patient, be persistent, and be positive. Treatment is lengthy and all the procedures, tests, blood work, lab visits and especially waiting around can be very, very trying at times. But at the same time, the only thing you can really do as a patient in terms of influencing outcome is to be resolutely positive. Don’t let anything get in the way of your focus on battling this disease. You are bringing all your energy to it. Waiting in a doctor’s office, or enduring yet another two-hour MRI with all that banging (I’ve done seven of these so far), is just something that you have to do. Again, you didn’t ask for this diagnosis, but you’ll get father if you just accept that your treatment is something you will simply do. Put your mind to it and don’t let the little demons of doubt get in the way. Do not yield to the disease. Your energy is critical to your well-being and as I said, it’s the most important thing you can bring to the fight. Get suited up – it’s time to get in the game with everything you’ve got.
So that’s it, really: learn as much as you can, take control of your disease, pick your team with care and make sure you are a person and not just a statistic to them, invest them with your trust and confidence, and be positive. Regardless of your treatment choice, these things will make a difference for the better in how you get through your diagnosis and therapy.
There is more hope than ever before for the newly diagnosed Myeloma patient. Huge strides have been made in the past five years, and new therapies continue to be developed. Being cured, it is said, really means growing old and dying of something else. That kind takes the “cool factor” out of it. But it’s the best outcome, nonetheless. And I hope that each of you find a way to reach it.