A Waldenstrom’s Listserv regular who fascinates everyone is Brian Di Carlo, not just because of his writing style but because he’s been sicker than most and yet he continues to be unusually upbeat. Your newsletter decided to interview him and perhaps discover the secret of his elevated attitude.- Jeanne Pond

Brian: My health began to go south after a brutal skiing accident, which left me unconscious, and with a broken jaw. It is probably only a coincidence but from that time period, I began to feel what I now know to be peripheral neuropathy in the tendons and muscles of my feet. This was in 1989. By 1991 I had visited several orthopedic surgeons concerning the growing pain in my distal joints (hips and shoulders) resulting in a diagnosis of osteoarthritus. I had a total hip replacement on my left side in 1995.

Still, however, there was no diagnosis of anything (I even passed a life insurance blood test in that year!) Then in the spring of 1997 I underwent a routine physical (have been having them since 1991) which turned up anemia. I blew that off. Then, while waiting for the tide to change while fishing, I got my first unstoppable nosebleed. Blew it off. I continued to get nosebleeds, blew them off. In the spring of 1998 a physical showed another even lower level of anemia and I was told that I was probably bleeding internally and to get an upper/lower GI series. I finally had it done with no results.

We are now in the fall of 1998 when I am finally given to a nephrologist who passes me to a hematologist who then tells me to call him an oncologist because I have what he thinks is multiple myeloma but he’ll know better when he gets back from his two-weeks’ vacation. And that was how I found out that I had a serious thing and that I had to tell my one-month pregnant wife the deal. I will forever judge anything bad that happens against that night. Compared to that level of emotional hell, nothing can scare me except wasting time.

I’d love to tell you that I made up my mind right there to never give in and spit in the eye of fear, but the truth is that I felt like overcooked pasta being pushed through a sink strainer. I went through the denial thing which passed into the let’s do pheresis thing which ended when I nearly died of a ruptured blood vessel in my peritoneal cavity.

In addition to being the most painful thing I have EVER undergone, it also deprived me of the use of my left leg and body for several months (I am still only about 50%). I finally had chemotherapy in January of 1999 which consisted of Cytoxan, 2CdA and Rituxan. Since then the good has gone up and the bad has continued to go down (all praise to God and science!)

Brian: I am forty-four and my degree is in environmental biology (I wanted to be a spy like Jethro Bodine but I failed the physical). I graduated just as Reagan was coming to power so I knew that I had little immediate future in environmental endeavors.

So I got a job in the computer industry and I have been there ever since. I have been an independent consultant until very recently. I have just begun working as a VP in Taxable Fixed Income for a major investment bank on Park Ave. NYC (yes, they know about my condition). The pace is fast and challenging, just like I like it. I am up at 4:30 a.m. and home by 6:30 p.m.

When I get home my title goes way, way up. I am Daddy, second only to Mommy, and in a tie with Nana (our live-in nanny). We have three children that are six minutes apart. In birth order they are Gabrielle, Colin, and Ryan. They are healthy, beautiful, and developmentally above average for triplets. My wife and I were married on December 19^th, 1991 at the Justice of the Peace across the street from where we lived in Armonk, NY. We were late because the cat got out and had to be caught, and five minutes later we were married and she went to school and I to work.

The kids were born June 23^rd, 1998 at 35 weeks during Lis’(my darling wife) final year of an OB/GYN residency. I lost money; my bet was on all girls. We tried for years to have children and finally resorted to IVF which worked on the second try. I will be forever grateful for this gift no matter what happens.

Lis is now a full time OB/GYN (average 87 hours/week) and about to become a full partner. Being a doctor is a family commitment, much like life in politics and religion. I like to tell people that our whole family is the doctor because it is a life of sacrifice for all of us. We have survived, and I dare say thrived, largely because we have committed to making our lives very simple.

We either are working or are with our family. We do not allow any other interruption or pursuit. The priority order is family, then work, anything else doesn’t matter When I walk in that door and grab three kids screaming my name, I know I am living right (I may have a different take when they become teenagers, however!)

Brian: You always want to think of yourself as a strong individual who evaluates risk and opportunity and pursues life with courage and boundless enthusiasm. But the truth is that I am just a determined coward. I was wobbly at times in the beginning and a little scared, although too sick to really comprehend my imminent danger when I landed in the hospital.

I also went through a period of feeling sorry for myself (the most useless emotional journey one can take) and ultimately I was damn angry that I might deprive my children of a Dad.

I still get flashes of anger at times, but the reality is that life is a death sentence with an indeterminate parole. You do what you want with it. If lying about bemoaning your fate is the best way you see fit to live, then by all means, go for it. There is no justice except that which you make. I really do believe that.

I also believe that there is an underlying evenness about the world and that no matter what, I am a valued part of it. I will not be defeated. I may finally lose my life to this disease but I will never quit, and therefore I am guaranteed to win. It is assured, therefore I have nothing to fear except the aforementioned wasting of time.

I don’t really know if my attitude has made a difference in the course of my ailment. I don’t really think about it since it adds nothing to my life. I am reminded of the discussion between Sherlock Holmes and Dr. Watson when Watson informs Holmes that the earth revolves around the sun, a fact with which old Sherlock was not familiar. Sherlock says, "My dear friend, I believe that I have only so much room for the information that I need to conduct my life and now that you have informed me of this fact, I shall do my best to forget it".

Although I don’t say it often, I am quite proud and happy with our little group, as unfortunate as we have been in winning the lymphoma lottery.

When I commute into the city and see all the "beautiful, healthy" people, I smile a knowing smile and think that few of them have ever met a real challenge. They might think winning the club racquet ball title or biking through Caracas was tough. Most of them couldn’t carry our shoes. I love you folks, may God bless us all. Amen.

Brian Di Carlo