A few more words about the CLL. I was fortunate that the CLL never really manifested in me the way it does with other people. When I started Rituxan treatments last year, I did some searches and found a CLL forum. Reading the comments from others dealing with CLL made me realize how lucky I really was. In the four years leading up to the beginning of treatment, I saw Dr. T quarterly, and with the exception of all the initial scans and biopsies, I didn't have any hospital visits to deal with.
My high white blood count was the only symptom that ever really showed itself. The white blood count peaked around 30,000, which I always thought was high, especially since "normal" ranges are between 4-11 (as I write this, I may have the top number wrong. I'll double-check that). When I began reading the experiences of other CLL patients, I was learning that my 30k was nothing compared to those who had white counts in the hundreds of thousands.
So, I felt lucky, and a little guilty, as if I wasn't fully immersed in this enough to even call myself a person with leukemia. With no other symptoms of CLL rearing up, I felt like this wasn't going to cut my life short after all.
Armed with that attitude, I set out to make sure I took better care of myself. I dropped almost 40 pounds and got myself in the best shape of my life. Along the way I met the woman who would become my best friend and my wife. Life with CLL was good, but I think it went that way because I felt like I had a ticking time bomb just waiting to go off inside of me, and while I was sure it wasn't going to go off soon, the likelihood that it would go off was still on my mind.
There was no time to waste time.
Saturday, March 26, 2011
Thursday, March 24, 2011
Milestones and Markers
My approach to the CLL and the kidney disease has been to look for little markers along the road to feel good about my progress. Today was the second day that the nurses at the dialysis clinic were able to use my fistula. The nurses were so pleased with the progress of my fistula that they think I can run with two needles on Saturday. That will be big progress, and using two needles gets me closer to being able to make the appointment to get my catheter removed.
That's progress.
That's progress.
Saturday, March 19, 2011
Dr. Tarantolo
I have to admit, I had a pretty poor opinion of doctors as I was growing up. I was thinking about this the other day, wondering where that attitude came from. My folks never talked ill of doctors, generally, so where did this attitude come from?
It turns out that much of this attitude was picked up from a few of the friends I hung out with. Who knew I was so impressionable? Anyway, going into all of this with the great feeling I had toward doctors, and to have my first visit with a doctor result in a diagnosis of leukemia, I wasn't too psyched up to meet Dr. Tarantolo.
Well, like it usually goes when you have your mind made up about people, you find that those impressions you had when you were a kid are usually way off base. I realized that as soon as I introduced myself to Dr. Tarantolo. He was just what I needed at the time. He was confident and reassuring. He took the time to talk to me more about CLL, and he took the time to get to know me.
In the course of the non-medical talk we had in the beginning, I told him I was a Springsteen fan, and with him being a Jersey guy, he had stories. He knows guys who know guys, so once he finished up the medical talk for the day, we would talk about the other things going on in the world. It was good to be able to relate to a doctor and to see he made the effort to be a regular guy. A regular guy who happens to be a great doctor.
Once all my initial testing was finished, and he knew more about my condition, our visits were probably 80-20, with the medical conversation as the low number there. That worked for me, and with each visit, that 20% was helping me take a more positive approach to what I was going through.
Looking back on all of this, I would say that I'm not sure I would've been as positive about all of this had I met with a different doctor that first day. The positive attitude would come in handy as we went along.
It turns out that much of this attitude was picked up from a few of the friends I hung out with. Who knew I was so impressionable? Anyway, going into all of this with the great feeling I had toward doctors, and to have my first visit with a doctor result in a diagnosis of leukemia, I wasn't too psyched up to meet Dr. Tarantolo.
Well, like it usually goes when you have your mind made up about people, you find that those impressions you had when you were a kid are usually way off base. I realized that as soon as I introduced myself to Dr. Tarantolo. He was just what I needed at the time. He was confident and reassuring. He took the time to talk to me more about CLL, and he took the time to get to know me.
In the course of the non-medical talk we had in the beginning, I told him I was a Springsteen fan, and with him being a Jersey guy, he had stories. He knows guys who know guys, so once he finished up the medical talk for the day, we would talk about the other things going on in the world. It was good to be able to relate to a doctor and to see he made the effort to be a regular guy. A regular guy who happens to be a great doctor.
Once all my initial testing was finished, and he knew more about my condition, our visits were probably 80-20, with the medical conversation as the low number there. That worked for me, and with each visit, that 20% was helping me take a more positive approach to what I was going through.
Looking back on all of this, I would say that I'm not sure I would've been as positive about all of this had I met with a different doctor that first day. The positive attitude would come in handy as we went along.
Tuesday, March 15, 2011
It Seems Like a Long Time Ago
It was not quite five years ago when I got the word that I had CLL. There I was, a 49-year old guy, who had never been to the doctor for anything more than a physical back in high school. I thought it would be good to see a doctor, since I was approaching 50. I remember thinking that I might as well as get in the habit of going.
So, in August, 2006 I went in for a physical. I had blood drawn, talked with the doctor, and I think I also mentioned that I thought I might be a good candidate for a sleep study. I got the referral for the sleep study and went about my way, figuring I wouldn't be back for another year.
That same day I got a call from the nurse, telling me that the doctor wanted another blood sample from me. I went to the hospital the next morning for the blood draw. I had to go out of town for a couple of days, so I didn't hear any more until I got back. I got the call saying I needed to go back in one more time for a blood draw. That wasn't the end of it. By the middle of the month, I was going in for two more blood draws. It never occurred to me that something was wrong. On Friday, August 18, I got the call.
The call at work came from the doctor. He apologized for the extra blood work he asked for and then said, "You have leukemia." Boom. My white blood count was higher than normal. If I remember correctly, I think my white count was around 18,000. The doctor couldn't believe what he was seeing, so that's why he had me take the additional test. I think we talked for a few more minutes, and he told me he would refer me to Dr. Tarantolo, "one of the best guys in town," he said. He also said he would have the nurse put together some information on leukemia for me. He told me it was CLL, which didn't mean anything to me just then.
After hanging up, it was all I could do to keep it together. I closed the door to my office, sat back down, and the tears poured out of me. Leukemia? How could that be? I didn't think abut asking that question when the doctor called me. So many things crossed my mind. .
There was no time to dwell on the news though. I had to go in for a CT scan the next morning. I'm not sure when I told my relatives. I wasn't married at the time, so I went home to my apartment, and did what every newly-diagnosed patient does. I went to the Internet for information. Nothing jumped out at me to make me feel any better. Probably because I was looking for answers where none really existed. I had leukemia and there wasn't anything I could read on the Internet that would change that.
I got my leukemia material in the mail within a couple of days. I felt a little better about what was happening inside my body after looking over the material in the package. I decided I would wait to tell my family about all of this until I understood it better, which I would have a better shot at after my first appointment with Dr. Tarantolo on August 24.
So, in August, 2006 I went in for a physical. I had blood drawn, talked with the doctor, and I think I also mentioned that I thought I might be a good candidate for a sleep study. I got the referral for the sleep study and went about my way, figuring I wouldn't be back for another year.
That same day I got a call from the nurse, telling me that the doctor wanted another blood sample from me. I went to the hospital the next morning for the blood draw. I had to go out of town for a couple of days, so I didn't hear any more until I got back. I got the call saying I needed to go back in one more time for a blood draw. That wasn't the end of it. By the middle of the month, I was going in for two more blood draws. It never occurred to me that something was wrong. On Friday, August 18, I got the call.
The call at work came from the doctor. He apologized for the extra blood work he asked for and then said, "You have leukemia." Boom. My white blood count was higher than normal. If I remember correctly, I think my white count was around 18,000. The doctor couldn't believe what he was seeing, so that's why he had me take the additional test. I think we talked for a few more minutes, and he told me he would refer me to Dr. Tarantolo, "one of the best guys in town," he said. He also said he would have the nurse put together some information on leukemia for me. He told me it was CLL, which didn't mean anything to me just then.
After hanging up, it was all I could do to keep it together. I closed the door to my office, sat back down, and the tears poured out of me. Leukemia? How could that be? I didn't think abut asking that question when the doctor called me. So many things crossed my mind. .
There was no time to dwell on the news though. I had to go in for a CT scan the next morning. I'm not sure when I told my relatives. I wasn't married at the time, so I went home to my apartment, and did what every newly-diagnosed patient does. I went to the Internet for information. Nothing jumped out at me to make me feel any better. Probably because I was looking for answers where none really existed. I had leukemia and there wasn't anything I could read on the Internet that would change that.
I got my leukemia material in the mail within a couple of days. I felt a little better about what was happening inside my body after looking over the material in the package. I decided I would wait to tell my family about all of this until I understood it better, which I would have a better shot at after my first appointment with Dr. Tarantolo on August 24.
Saturday, March 12, 2011
The Road
I had a gazillion names picked for this blog, but all were taken. I wanted something positive and upbeat. I had been toying with this name too, because I like the alliteration, but it makes for a long title. I'm sure it will be fine. It's a place to write, and that's what I was interested in.
If you saw the profile, you may have noticed the words leukemia and kidney disease in the same sentence. I've had the good fortune to be visited by both of these things, and as people will say when faced with these challenges, they do force you to change how you view the world.
I was diagnosed with Chronic Lymphocytic Leukemia five years ago. I remember the day I got the word as if it happened yesterday. More on that in future posts. Four years into having the CLL monitored, my kidney function started to demand attention. We later learned that my kidneys have been going south for probably 20-30 years. The technical name is iga nephropathy, also known as Berger's disease.
Either way, it was a double whammy bonus for me.
So, with this blog I want to tell my story as we work toward the day when I get a kidney transplant. A lot has happened so far, and there's more to come, I'm sure. I hope that the one or two people who check out this blog will find something useful for their own situation. If no one reads it, well, that's okay too, because I'll have a place to vent, reflect, and generally take note of what looks to be an interesting road.
A road to recovery.
If you saw the profile, you may have noticed the words leukemia and kidney disease in the same sentence. I've had the good fortune to be visited by both of these things, and as people will say when faced with these challenges, they do force you to change how you view the world.
I was diagnosed with Chronic Lymphocytic Leukemia five years ago. I remember the day I got the word as if it happened yesterday. More on that in future posts. Four years into having the CLL monitored, my kidney function started to demand attention. We later learned that my kidneys have been going south for probably 20-30 years. The technical name is iga nephropathy, also known as Berger's disease.
Either way, it was a double whammy bonus for me.
So, with this blog I want to tell my story as we work toward the day when I get a kidney transplant. A lot has happened so far, and there's more to come, I'm sure. I hope that the one or two people who check out this blog will find something useful for their own situation. If no one reads it, well, that's okay too, because I'll have a place to vent, reflect, and generally take note of what looks to be an interesting road.
A road to recovery.
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