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Mayo and Miles

Having returned home from Scottsdale I felt good. I had four days of rest with the trip home and a couple of well earned days off. Then it was back in the saddle, under the watchful eye of my trainer Julie. No big rides at first as I got back into my 5 rides a week routine. I also was about to start a 4 week treatment of Retixin. In December we had decided with the Oncologist that this treatment may help with the neuropathy I get in my legs and could help lower my IgM levels (blood talk). It meant four Monday IV treatments lasting between 4 and 7 hours. I traveled up to Jacksonville every Sunday afternoon. Sat for hours with a bag of solution dripping into the back of my hand. Then driving the four hours home. Unfortunately I had a reaction to the first round, which had me itching and blotches on my shoulders. So after more drugs, flushes and turning the rate of drips down, I managed the whole bag in just over 7 hours. Fortunately Deirdre drove us home and I felt fine again as I got on my bike the next day. The next two rounds went well with no reaction and we were able to speed up the drips so I was done in four hours. My rides lengthened again up and down the coast at Jupiter and life was good. On my third visit to the Mayo I had blood tests before the IV treatment and my IgM was up. To give you an idea of what this means for someone with Waldenstrom’s, a normal IgM protein level is between 37-286 mg/dL. When I was diagnosed in July mine were 1820 mg/dL and in December they were at 1930 mg/dL. Now they had risen another 1000 to 2930 mg/dL which was not what I was expecting. However after Deirdre had read a lot about the drug I was having we learned that often it spikes up before it goes down so we crossed our fingers and hoped this is the case for us.

I was feeling a little tired, maybe it was the IgM increase or the 700 miles I had ridden my bike in January but we decided to take a week off and rest while I had my fourth and final treatment in the first week of February. All in all it was a good month. I had cycled my first century ride in Scottsdale, done 700 miles in a month (200 more than I had ever done in a month before) and I had completed 4 rounds of antibody treatment which should be my last for a while. To anyone fighting any illness or disability I would say, don’t give in to it, push yourself if you can and fight for your health as hard as you are able. Your body is the greatest machine you will ever know.