I have been living with multiple myeloma for over four years now.

While I have no illusion that I am an expert on being a myeloma patient, I would say that I am past the beginner stage and into the intermediate level.

My disease was discovered while looking for the cause of some severe mystery colon inflammations I had been having for over two years. After I was diagnosed, I first took a “wait and see” approach for about six months.

When my free light chain levels became severely elevated, I was treated with Velcade ^[1] (bortezomib), Revlimid ^[2] (lenalidomide), and dexamethasone ^[3] (Decadron) for 10 months. At that point my stem cells were harvested in preparation for a stem cell transplant. However, it was decided that my treatment had been effective enough to wait on the transplant, and that instead I would go straight into main­te­nance therapy using just Revlimid and methyl­pred­nisolone. I have been on this maintenance therapy now for about three years.

Let me tell you about some of the lessons I have learned during this journey so far.

Lesson 1: Be patient.

Not just a little patient, but extremely patient. We’re talking Moses-wandering-the-desert-for-40-years patient.

It begins with the patience required to get past the initial diagnosis phase. Once you are diagnosed with multiple myeloma, or any cancer for that matter, you will think that every ache and pain is the Grim Reaper knocking at your door. He’s probably not; those aches and pains were often there before. Time makes this phase better. Just be patient. Eventually you will be able to figure out what pain is myeloma related and what isn’t.

Next you will need to be patient with your understanding of multiple myeloma. It is a complex disease that hits everybody a little differently. It takes a while to understand your individual disease. I found that in time with some of my own research and lots of talking with my doctors, I have a basic understanding of how my dis­ease works in my body. It takes time.

Patience is also required in great abundance for the amount of time you will be spending at your doctors’ (plural intentional) offices, the lab, the imaging center, the pharmacy, and the parking garages of each of these. Think of this as your new part-time job. It’s not something you really want to do, but since you have to do it, you might as well not get upset about it. Try to be patient.

Lesson 2: Take stock of your life.

Using the patience I described above, wait until the shock and awe of the diagnosis wears off, and then look at where you are at emotionally, physically, professionally, and economically. Decide how you want to spend the rest of your life.

While this step seems obvious to some, to others it is just too hard to get past the difficulties of the disease in order to take this step. To me, the real danger is just wallowing in our disease and not making the most of what we are given each day. This step can take a herculean effort when you are in pain, debilitated with weakness, and broke from paying for medical treatments. But if you can see past these difficulties, you will realize you have a value beyond just being a patient.

You are a huge influence in somebody’s life. Many times in lots of people’s lives. Use the time you have to leverage this influence to benefit them and you will be richly rewarded.

In my case, I figured out that I was spending way too much time and effort trying to create a future life for my wife and kids and not enough time and effort enjoying the present with them. It’s an easy trap to fall into. Once I took stock, I decided to use my emotional, physical, and economic resources to enjoy our lives now. We determined that our time together was more important than the financial legacy I might leave them with.

Lesson 3: Find a doctor you trust and like.

Please do not make the mistake of just accepting whatever doctor happens to come your way through a physician referral system. If you are not happy with your current doctor, find another. There are over 900,000 active doctors in the U. S. alone. You can find one you like even though it may not be easy.

Physicians groups, hospitals, insurance companies, governments, and even your current doctor may stand in your way. They all have their reasons for why you must accept their choice for your care, but the bottom line is that it is YOUR care, not theirs. Your reasons for liking or not liking a doctor are as varied as there are people on the planet. It doesn’t matter. They are YOUR reasons.

What does matter is that you trust your doctor. Unless you are medically trained, you will be faced with a complex set of medical terms and decisions that you will need to have interpreted. This is especially true early on in your diagnosis. Do the work to find a doctor you believe in.

Lesson 4: Don’t let your doctor be God.

What I mean by this statement is that you need to take charge of your treatment. The awesome doctor you worked so hard to find is still just treating a disease. He or she needs to know about you and your goals with multiple myeloma. You need to be the one to ask enough questions, do enough research, and listen to your body enough to make the final decisions.

As I said before, multiple myeloma is a very individualistic disease. Its treatment requires individual ap­proaches. Let statistics be a general guide only. Give the doctor you trust all the information about your symptoms, your treatment reactions, and your goals so that he or she can create a treatment plan that works for you.

For some of us, the goal means going for a symptom-free life as long as possible. For others it means going for as long a life as possible. For some it means being as comfortable as possible regardless of the length of our lives. Usually it is some combination. Only you know what is best for you; don’t let your doctor make this decision for you.

Do you have any important lessons to share?

Aloha and carpe diem!