NO MATER WAHT, KEEP DANCING TO DIXIELAND

My name is Arnold Schwartz. I am 84 years of age and I live in Gulfport, Florida.

About two and one half years ago on a bright Sunday morning I was preparing to meet my future wife and go dancing at a Dixieland jazz concert.

I was in the bathroom brushing my teeth when I suddenly ran out of gas. How much effort does it take to brush one's teeth? I had to stop and rest for awhile and then continued brushing my teeth. I then started to comb my hair and again I ran out of gas. I had to call my future wife to tell her that I would not be able to do any dancing.

The following day I went to see my doctor and told him what happened. He took some blood samples and sent them to a lab to be checked. The following day my doctor called and told me that I was losing blood. My answer was that I did not see any blood in my stool or in my urine so where was the blood going. His reply was that if I wasn't losing it then my body was not making it.

He sent me to an oncologist and she determined that I had a blood disease known as Waldenstrom's Macroglobulinemia.

I said to her "What the heck is that"? She explained that my bone marrow was producing protein instead of blood.

At that point I asked her what the prognosis was, expecting her to tell me that I had a short life expectancy.

I was prepared to accept the worse because I was 82 years old and felt that I had lived a long and fruitful life. Her answer was that I had many years left.

I was hospitalized and I had my blood cleansed of the overabundance of protein and also received chemotherapy.

After leaving the hospital I had some additional chemo and was also given injections of Neupogen. After about two months of injections I was switched to injections of Procrit which I get weekly to this day.

The original symptoms that I had, namely extreme fatigue, dizzy spells and nausea I still have. After about a year and a half my oncologist declared that the disease was in remission and under control.

I complained about the symptoms I was still experiencing and she, along with my primary doctor sent me to see a heart specialist who monitored my heart for 24 hours and then declared that my heart beat was too slow (30 beats per minute) and he recommended a pace-maker. He assured me that I would feel much better after the pacemaker was installed. I agreed to have it done and when I saw the heart specialist again I told him that I did not feel any better and the symptoms were still there.

However, I told him that I was not sorry that the pacemaker was installed because it might prevent my dying in my sleep. He agreed that it could happen.

Now two years + later, I still have the original fatigue I experienced.

Now my Oncologist wants me to see a Neurologist which I plan to do but I still believe that my intense fatigue and dizzy spells are directly related to Waldenstrom’s, in spite of the fact that my Oncologist tells me that my blood count is not that bad.

I find that the best medication is to go to a Dixieland Jazz concert and dance to some foot-tapping music. I cannot dance through a complete song as I used to, but I can go through most of the number without running out of gas.

I said to my Oncologist that there must be one doctor in the entire medical profession that can answer my questions but how do I find him or her? I am planning to visit the M.D. Anderson Cancer Center in Houston, Texas for a consultation and maybe find an answer to my complaints. Until that happens I take each day at a time and try to make the most of my staying alive.

When the disease was first discovered and my white cell count was extremely low I picked up an infection in my left eye. Fortunately I saw the right doctors and the infection was taken care of. I was told that I came very close to going blind in that eye. I have recently had some surgery done to the eye as a result of the infection. The surgical procedure is called eyeball resurfacing. I don't think WM is going kill me but the damage it does to other parts of my body might.

Before I knew about WM I was suffering with a bad case of psoriasis. I went to my computer to learn all I could about the disease and found a book written by a psoriasis patient who claimed to have beaten the disease by using a special diet. I bought the book and followed it closely. The diet consisted of eating nothing but fruits, vegetables and nuts. To my surprise I noticed that I was losing a pound or two every day. I told everyone I knew that I had found the perfect diet. My weight had dropped from 175 pounds to 145 pounds.

When I was diagnosed to have Waldenstrom's I went to my computer to learn all I could about the disease. In looking at the symptoms of the disease I noticed that weight loss was a major symptom. I then realized that it was WM that caused the weight loss and not the diet. Today I weigh about 185 pounds and nobody has been able to tell me why I have put on all this weight.

My oncologist insists that it is the result of a lack of exercise. I don't believe it because when I go dancing I do plenty of exercising.

I have good days and bad days and lately the bad days are more numerous then the good days. I try to maintain a positive attitude and the thought of dying does not bother me.

Perhaps if I were a good deal younger and had a growing family I might have a different attitude. One thought I can pass on to others with this disease is to not let it overwhelm you. Keep busy and try not to think scary thoughts.

I keep my mind off of WM with the aid of my computer, my TV set and my Dixieland Jazz concerts. I feel that if I am stubborn enough I might live to age 90.

I'll write another story when I hit 90.