As happens with most myeloma patients, my diag­nosis was delayed. There were signs of the disease that, in retro­spect, should have prompted further in­vesti­ga­tion. But, because of my and my doctors’ un­fa­mil­iar­i­ty with the disease, we did not do the test­ing necessary for a diag­nosis until there had been bone damage.

This is not unusual. The type of bone pain myeloma causes is easily con­fused with a host of mus­cu­lo­skel­e­tal prob­lems that are frequently treated with chiro­practic or physical therapy regimens.

Once the real diag­nosis comes in, many of us kick ourselves for not being more proactive in seeking proper medical care. We lament that, had we pressed the issue sooner, perhaps we could have prevented some of the damage that is now largely irreversible.

Since my first athletic overuse injury from ignoring pain, which resulted in stress fractures in my shins, I have been “body aware.” I pay attention to aches and pains, but try not to obsess about them.

This myeloma thing, though, makes me wonder if I have crossed the line to unhealthy paranoia.

I review my monthly blood test results online as soon as they are available, checking back frequently as more results come in. When I visit my myeloma doctor, I usually have questions about symptoms, available treat­ments, or whether certain testing should be done.

He often tells me “Don’t worry so much; go live your life and enjoy it!” To a degree, he has a point: It is im­por­tant that we use the days we have in the most beneficial way possible. This can be hampered if all we think about is the disease.

Finding that balance between vigilance and paranoia can be difficult.

I remember reading a column by one of my fellow Beacon writers in which she related how, for the first time since her diagnosis, during a recent weekend she actually went an entire day or two without thinking about myeloma. I was both amazed and jealous that she was able to free herself, even for a short time, from the burden of dealing with the disease.

I haven’t had one of those days yet, and I suppose that, as long as I am on some type of treatment, it will be virtually impossible to put myeloma completely out of my mind. It’s hard to not think about why you are pop­ping those pills.

Blissful ignorance at this stage sounds like heaven, but I am not sure that it is what I should wish for.

I am naturally the type of patient who plays an active part in my medical treatment. When I go to any doctor, regardless of the reason, I always have an objective – and usually a tentative diagnosis – prior to the visit. I have learned over the past 20 months since myeloma came into my life that it is essential for myeloma pa­tients and their caregivers to take a similarly proactive role in the monitoring and treatment of this disease.

Myeloma is so varied, the treatment options so myriad, and the science so uncertain that only we the patients can make the final decisions about how to proceed. In order make these decisions effectively, we must do the research, keep a close eye on our symptoms, and take care that we catalog the side effects of the medi­ca­tions we are taking. Yes, it is important that we seek out the care of a myeloma specialist, but that doctor is just another resource – not someone who dictates to us a course that we blindly follow.

We all wish that myeloma would lend itself to a consensus course (or courses) of treatment depending on the results of testing, but that is simply not the case. There are “schools of thought”: transplant versus non-trans­plant; aggressive therapy versus a more sequential approach; two-drug versus three-drug com­bi­na­tions.

How do we choose?

The answer is by doing our homework and being vigilant. Some examples from my own personal experience illustrate this.

My myeloma specialist has a “everyone eligible should get a transplant” approach to treating myeloma. Dur­ing my first visit, he laid out a course of treatment which consisted of induction therapy followed by a trans­plant. He even said during a later visit, when I questioned whether a transplant was appropriate, that failing to have one would be “suicide.” I guess you can say he believes strongly in his position.

Feeling the need to be sure about my choice, I sought a second opinion from a myeloma specialist who was far more reluctant to prescribe a transplant. In the end, I did a transplant, but only after thoroughly researching the question on my own.

Another example. About six months after my transplant, my M-spike started to rise. Of course, I was con­cerned. The next month it rose again. Now I was doubly concerned. So I started doing some research and learned that this could be a relapse (bad) or secondary MGUS (good).

After digging into more details of my results, I saw that the clone of my post-transplant M-spike was different from the clone I had at diagnosis. This pointed to the likelihood that I was experiencing secondary MGUS.

When my doctor was reviewing my results, he expressed concern about the rising M-spike. But when I men­tioned the prospect that it could be secondary MGUS, he reconsidered. I am not sure when or if he would have picked up on this point if I had not raised it.

There are other examples I could give of instances in which being vigilant, doing the research, and keeping a close eye on what was going on with my body have proven to be helpful in guiding treatment decisions. I am hardly alone in taking this approach, judging from the many “patient experts” who populate the Beacon’s online forum and other websites.

This is not to criticize the doctors who are so essential to our survival. But, in fairness to them, they have hun­dreds of patients. I only have one. So I can afford to devote my full-time energy to that single patient.

So, to answer the question posed in the title to this column, I don’t think I am paranoid or even overly ob­sessed with my condition. Sure, I would love to live in denial, forget about multiple myeloma, and just live. But if I want to maximize my opportunity for a long, quality life, vigilance is critical.

In fact, it has become clear that practicing vigilance and thoroughly researching the disease before making a decision has freed me to live the best life possible. I am comforted by the fact that I have done all that I can to make the best choices, which allows me to put that part of my life in a compartment and enjoy all that life has to offer.