Multiple myeloma is very frustrating.

I know, I know. I am stating the obvious. Sometimes it just helps to say it out loud.

How can I have terminal cancer and not be sick? I mean, I see the results of the lab tests and mostly I understand them, so I know I really do have this cursed disease. However, I don’t really feel sick.

For those of you battling disease with very real – and very difficult – symptoms, this probably sounds like a rich man complaining about poor butler service. But for those of us who are currently asymptomatic, this is the conundrum we have to figure out every day.

Don’t get me wrong; I very much understand that I am truly blessed to be in a relatively benign stage of my disease.

I have had the opportunity to come to grips with my diagnosis without having to battle serious debilitating physical symptoms. I have used this time to re-focus my life in a way that I don’t waste whatever days I have left. I have been able to cherish my moments with my family in a way I would never have been able before my diagnosis.

So what do I have to complain about?

Well, it’s not looking sick, I guess.

Whenever people who know about my cancer see me, they tell me how good I look (not a problem I had before I got cancer). What my hyperactive imagination hears, however, is “why don’t you look sick?” I imagine these people all huddled in a corner somewhere deciding whether or not to believe me when I say I really do have cancer.

My closest friends and my family, however, have seen the change in my stamina. They have been aware of my underlying colitis condition that is related to my myeloma.

People I don’t see that often, however, seem perplexed that I am doing so well. If somebody asks, I explain how myeloma works on some of us and how it can (hopefully) take years to cause major symptoms. But most people just get a puzzled look on their face and change the subject.

I guess the one I really need to convince that I am sick is me! Here I am, a seemingly healthy man, who feels pretty good and who I have to continuously talk into continuing to treat a disease he can’t touch, feel, or even sense that he has.

In the two years since my diagnosis, I have changed my life significantly to accommodate hundreds of blood tests and doctors’ appointments. I have undergone nine months of induction therapy, and am now enduring indefinite maintenance therapy. I have even flown to the mainland in order to have my stem cells harvested and to undergo some serious infusion therapy.

All this for a guy who doesn’t seem sick – except for all the treatment!

This whole thing goes against my logic. Why do I treat myself for something I can’t even tell that I have?

The answer is: for my family.

Every day I look at my pill box (you know the one all us old and/or sick people have to keep the meds straight), and I pause to consider whether or not I am doing the right thing. I know that while the treatment is keeping my cancer in control, it is also hurting my body to some degree and making me feel tired or wired, grumpy or happy, and generally just not feeling very well. When I have had my treatment “vacations,” I have really felt the difference in my body.

I have to keep taking drugs that make me sick so the disease, which hasn’t yet made me sick, doesn’t make me sick.

Got that?

That wacky statement pretty much defines my myeloma.

In the beginning of my disease, I was able to just wish it all away. My cancer load was small enough that I could just keep track of it and not treat it. During this short period of time, I didn’t realize just how good I had it.

Unfortunately, my free light chains increased rapidly, and within six months, I had to make the decision whether or not to start treatment.

I seriously considered not starting treatment, or using only naturopathic remedies, as I was terrified of it. I realized, though, that I had to consider the other people in my life – my children and my wife. Two doctors said that I probably wouldn’t make two years without treatment.

I didn’t used to trust doctors to know what was going on all the time. Heck, I didn’t always believe that they would tell me the truth unless it was in their best interest. So should I listen to them and take the drugs even though I felt fine, or should I wait and see if they are all wrong?

Eventually the scientific side of my brain took over and asked: What if you're wrong? What if you did nothing because of your fear of treatment and you died way earlier than you needed to?

In the end, I decided to start treatment without delay. I made the decision to do everything in my power to see my boys grow to men. For me, it was the right choice.

Even though it goes against my instincts, I take my pills every day. I monitor my blood every month. And when it is time, I will willingly destroy my remaining immune system during my stem cell transplant in the hopes of buying myself some more good days.

For those of you facing this choice, take heart. What I was so afraid of was the chemotherapy I saw others endure going back 40 years. I have to admit, though, that that treatment was for very different cancers than myeloma and was generally much harsher.

The treatment most of us get for multiple myeloma today is much more targeted and tolerated very easily compared to the treatments used 40 years ago. Even though I have been on and off treatment for over 18 months now, I am still able to do pretty much everything I did before I started. My experience is not atypical. Most folks do just as well.

I am satisfied with my treatment so far, and I’m glad I decided to undergo it. If you need to make this decision, try to remember that you are actually very lucky to have a choice. Many in our myeloma community are faced with no choice at all.

You will have one cross to bear, though. Be prepared for lots of people to tell you how well you look.

Oh well; I guess that really isn’t a problem after all!

Aloha and carpe diem!