I consider myself an optimist. I always see the glass half full rather than half empty. This approach has served me well since my multiple mye­lo­ma diagnosis two and a half years ago.

However, while awaiting the blood test results of my regular check-ups, I turn into a pessimist. I expect the worst, and I mentally prepare myself for the worst possible news. I have no explanation for this change in attitude that I go through every three months.

In addition, a sense of paranoia overcomes me on the days leading up to the release of the test results. Every ache or pain becomes imagined evidence of new lesions.

A delay in the release of the results conjures up a notion that my doctor is re-running the tests to verify that the bad numbers are valid before sharing them with me.

I become introspective and moody. My family can tell it is time for the three month check-up without having to check the family calendar on the refrigerator.

Such was my state of mind last week when I logged into my online account provided by my hospital to view my latest test results. These results were of special significance as they would determine whether the stem cell transplant I had undergone in June was a success.

My pessimism, paranoia, and anxiety quickly disappeared as the following came up on my screen:

SPE Interpretation:         Normal serum protein electrophoresis pattern.
Monoclonal Protein, Serum:  None detected.
Immunofixation, Serum:      No monoclonal protein present.

I didn’t know whether to laugh or cry. I did both.

I couldn’t help but think, “What a difference a year makes!”  It was almost a year ago to the day that my oncologist informed me that “watch and wait” was over and that it was necessary to begin treatment.

What have I learned in this past year? What advice can I give to others?

After all, I consider myself a multiple myeloma veteran now. I've been through the initial diagnosis, watch and wait, radiation therapy, a bone biopsy, three bone marrow biopsies, four PET scans, numerous full-body x-ray surveys, induction therapy with seven cycles of Revlimid ^[1] (lenalidomide) plus dexa­metha­sone ^[2] (Dec­a­dron), and a successful stem cell transplant.

There is little else for me to experience except for maintenance therapy and the inevitable relapse.

One thing I know for certain. I have been blessed with outstanding care. This is in no small part due to the fact that I live just 50 miles from a cancer research institution that includes a group of hematologists / on­col­ogists who specialize in the treatment and care of multiple myeloma. Being treated by a myeloma specialist is of paramount importance and something that should become the top priority for newly diag­nosed patients.

Another thing that I learned over the past year is that the treatment regimens and procedures are ever chang­ing. For example, I fully expected to be isolated and highly restricted in activities and diet upon dis­charge from the hospital after my stem cell transplant. Much to my surprise (and delight), five days after being discharged I was released from all physical and dietary restrictions. My oncologist said that there was no data to support strict restrictions on diet and activities post-transplant. This was at odds with the material the hospital had given me to educate me on the transplant procedure. Things change that quickly.

I am not one to demonize insurance companies, especially my insurance carrier. My policy has outstanding coverage. My claims have totaled nearly $200,000 this year, and my total out-of-pocket expenses have amounted to $2,500 – my deductible.

However, expect “insurance surprises.” My surprise came in the form of a $12,000 claim that arrived nearly two years after the service was performed and was rejected. My policy excludes genetic testing. Because the word “cytogenetic” appeared on a claim presented to the insurance company, payment of the claim was denied, citing the genetic testing exclusion. Fortunately, a young account representative at the cancer center vigorously pursued this error on my behalf and was able to get it covered by my health insurance carrier.

Taking time to learn the details of your insurance coverage is time well spent and prepares you for any battles you may have with your health insurance carrier. Enlist the help of your health care provider in re­solv­ing issues. I found that they were more than glad to do so. They have the expertise and knowledge of insurance to battle with insurance companies on equal terms. I am convinced that, had my health care pro­vider not intervened on my behalf, my battle with the insurance company would still be ongoing.

One thing I also learned, especially during my transplant, is to take care of my caregiver. We become so caught up in our care and how we are feeling that we forget about the physical and emotional well-being of our caregivers. Judith London, a psychologist who recently wrote a book for Alzheimer’s and dementia caregivers, said "Caregivers are often the casualties, the hidden victims. No one sees the sacrifices they make."

One thing I made very clear to my wife as we were planning her caregiver role during my transplant is that she would not be at the hospital 24/7. We identified in advance three days where she would not even come to the hospital. Further, on those days she was at the hospital, she was rarely there for more than four or five hours.

Such an arrangement gave her the physical and emotional break that she deserved and needed. In our case, it also enabled her to prepare for my return home, where she would be my sole caregiver.

I would advise other patients to never forget that myeloma is a heterogeneous disease. I personally know three other individuals with this disease, and our experiences, including symptoms and responses to treat­ment, vary greatly.

I also suggest that patients be wary of relying on anecdotal evidence when considering treatment options and planning treatment. The few times time I have done so have led me astray and most often given me false hope and expectations. You are better served to rely on research-driven data, procedures, and pro­to­cols that often only an oncologist can provide you with.

My self-imposed status as a myeloma veteran hardly qualifies me as an expert. I still have far more ques­tions about this disease than I have answers. Actually, I enough questions to write an entire column on those alone.

I am now classified as having a very good partial response to treatment. To determine whether I achieved a complete response (CR) or stringent complete response (sCR), I would have to undergo a bone marrow biopsy. Having less than 5 percent plasma cells in the bone marrow is one of the criteria for achieving a complete response. Part of me wants to do that bone marrow biopsy to ascertain exactly where I am at.

However, my doctor says that the result of that biopsy would in no way influence the maintenance treatment I am scheduled to start in January. Therefore, I am not going to split hairs in classifying my response to treatment. As far as I am concerned, I am in remission and I don’t need another test to confirm the fact that I am in a much better situation today than I was a year ago.

While I consider myself an optimist, I also am a realist. I know that as positive as my situation is right now, it can change quickly. That is the reality of this disease and the one fact that was driven home to me during my experiences over the last year.

Permanent neuropathy, the threat of secondary cancers, and the side effects of low-dose Revlimid main­te­nance therapy are short-term issues I will have to deal with next year.

Hopefully, the more serious issues of the inevitable relapse are years away. Time will tell.