My CLL gets a little love today. It hates it when the kidneys get all the attention! Today is a CLL maintenance treatment day, so that means a visit with Dr. Tarantolo and the very cool nurses at the Midwest Cancer Center. It takes a special nurse to work in a cancer center, I think. To remain positive among the people with various types of cancer says a lot about the kind of person who chooses to be a nurse in a cancer ward, or in a cancer clinic like this one.
Right before I started writing this post, one of the nurses came around with a tray of cookies for us. Simple things, right? Just a few minutes ago, Terri, the person who handles the phones and does the scheduling for the doctors, just put a blanket around a woman who was curled up on a recliner while her husband received his treatment. Another simple thing, but all those simple things add up to great care.
My visit with Dr. Tarantolo went really well today. The visits are always good, but today was one of those days when he settled into his chair and seemed as if he was in the mood to chat. We talked about my Bix run from last week, and then he asked what the latest was with my transplant.
He supports me getting a live donor, because the dosage of anti-rejection meds will be lower, which will mean a less likely chance of kicking up my leukemia. Even if my leukemia did reappear, he was confident that he could treat it without damaging my transplanted kidney.
I had to laugh when he described himself as an "academic" doctor today. He was telling me about his conversation with Dr. Miles back in May, and he said he can't believe the academic doctors at UNMC aren't pushing to get me a transplant, given my unique combination of CLL and kidney disease.
Even though he describes himself as an academic doctor, I can say that Dr. Tarantolo is not just an academic. He is committed to helping his patients live a full life. That he is curious and also committed to learning sure isn't a bad thing. Some doctors are content to teach, but it's clear to me that Dr. Tarantolo is passionate about learning and applying that knowledge on his patients.
Since my leukemia is in remission, Dr. T says we can put a little more time in between visits. So, instead of coming back at the beginning of October, I'm coming back at the end of October. 12 weeks out instead of eight weeks. Another good sign of progress.
Showing posts with label Rituxan. Show all posts
Showing posts with label Rituxan. Show all posts
Friday, August 5, 2011
Saturday, April 16, 2011
Time to Talk About the Kidneys
So, once the leukemia treatments wrapped up in the spring of 2010, my creatinine number was still too high. I started seeing Dr. Frock monthly, with each visit showing the same thing. My kidney function was around 15%, and it wasn't getting better.
I was getting shots of Aranesp to help get my red blood count back up, but clearly my kidneys weren't helping with this. Another kidney biopsy revealed that something else was happening with my kidneys. I had Berger's disease, also known as IGA nephropathy. According to the pathologist that read this biopsy, I probably had this going on for 20-25 years.
Dr. Frock mentioned IGA prior to the beginning of my leukemia treatment. To his credit, he did a good job of discussing my situation with Dr. Tarantolo, so both doctors were in the loop on what I was getting for treatment. Dr. Frock was hoping that the leukemia was driving my issues, so we didn't focus too much on the IGA. At least not until after the treatments were finished.
Once it became clearer that I had the double whammy bonus of two things wrong with me, I heard the dreaded D-word. It was time to start thinking about dialysis. My heart sank when Dr. Frock mentioned this for the first time. Dialysis sounded like a death sentence to me at the time. I was too young, and in too good of shape to need dialysis. The stubborn part of my nature dismissed the need for dialysis. I was sure that my kidneys were just slow to respond to the leukemia treatments.
Again, Dr. Frock was patient with my stubborn ways, and agreed to hold off on pushing the dialysis. In the meantime, I started to make some changes in my diet. Treatment, while easy enough not to disrupt too much of my regular routine, did slow me down when it came to my exercise. The decadron I got each time also made me eat like I was going to the electric chair! So, when I got home from treatments each Friday afternoon, I was like the Tazmanian Devil rifling through the cupboards for food! Once treatments were done, I got back to better eating habits.
While in the hospital for the kidney biopsy, we met a dietician who gave us some good information on a renal diet. Armed with this information, I thought this would be another change I could make to help my kidneys.
By September of 2010 my kidney function had dropped to 11 or 12%. Dr. Frock brought up dialysis again, which I again waved off. I did say okay to giving my name and number to REI, so they could set up a time to educate us on dialysis. This I agreed to, but when the call came to set up an appointment, I didn't pickup, and I never returned the call.
I did agree to letting Dr. Frock prescribe blood pressure medicine for me. My bp was not improving either, so this was something else I could do help my kidneys.
September was my first month of maintenance treatments, and the plan was for me to come in once each week for four weeks. As I mentioned in a previous post, we changed that schedule going forward to a once every eight weeks program.
My first maintenance treatment was tougher than I remembered. I didn't feel as good afterwards like I did back during the initial treatments. I thought it was because there was less leukemia in me. Dr. Tarantolo corrected my thinking there, and prescribed compazine for me to take if I didn't feel well following treatment. I had taken this during my initial treatments, from time to time without any problems, so it seemed like a good idea.
What I didn't see coming was the train wreck about to take place in my body. I'll pick the story up there in my next post.
I was getting shots of Aranesp to help get my red blood count back up, but clearly my kidneys weren't helping with this. Another kidney biopsy revealed that something else was happening with my kidneys. I had Berger's disease, also known as IGA nephropathy. According to the pathologist that read this biopsy, I probably had this going on for 20-25 years.
Dr. Frock mentioned IGA prior to the beginning of my leukemia treatment. To his credit, he did a good job of discussing my situation with Dr. Tarantolo, so both doctors were in the loop on what I was getting for treatment. Dr. Frock was hoping that the leukemia was driving my issues, so we didn't focus too much on the IGA. At least not until after the treatments were finished.
Once it became clearer that I had the double whammy bonus of two things wrong with me, I heard the dreaded D-word. It was time to start thinking about dialysis. My heart sank when Dr. Frock mentioned this for the first time. Dialysis sounded like a death sentence to me at the time. I was too young, and in too good of shape to need dialysis. The stubborn part of my nature dismissed the need for dialysis. I was sure that my kidneys were just slow to respond to the leukemia treatments.
Again, Dr. Frock was patient with my stubborn ways, and agreed to hold off on pushing the dialysis. In the meantime, I started to make some changes in my diet. Treatment, while easy enough not to disrupt too much of my regular routine, did slow me down when it came to my exercise. The decadron I got each time also made me eat like I was going to the electric chair! So, when I got home from treatments each Friday afternoon, I was like the Tazmanian Devil rifling through the cupboards for food! Once treatments were done, I got back to better eating habits.
While in the hospital for the kidney biopsy, we met a dietician who gave us some good information on a renal diet. Armed with this information, I thought this would be another change I could make to help my kidneys.
By September of 2010 my kidney function had dropped to 11 or 12%. Dr. Frock brought up dialysis again, which I again waved off. I did say okay to giving my name and number to REI, so they could set up a time to educate us on dialysis. This I agreed to, but when the call came to set up an appointment, I didn't pickup, and I never returned the call.
I did agree to letting Dr. Frock prescribe blood pressure medicine for me. My bp was not improving either, so this was something else I could do help my kidneys.
September was my first month of maintenance treatments, and the plan was for me to come in once each week for four weeks. As I mentioned in a previous post, we changed that schedule going forward to a once every eight weeks program.
My first maintenance treatment was tougher than I remembered. I didn't feel as good afterwards like I did back during the initial treatments. I thought it was because there was less leukemia in me. Dr. Tarantolo corrected my thinking there, and prescribed compazine for me to take if I didn't feel well following treatment. I had taken this during my initial treatments, from time to time without any problems, so it seemed like a good idea.
What I didn't see coming was the train wreck about to take place in my body. I'll pick the story up there in my next post.
Friday, April 15, 2011
Treatment Then and Now
I came to be writing this blog after my intial treatments for CLL were finished. I'm now in maintenance mode, so I'm getting Rituxan today while I write this post.
Treatment was a pretty uneventful experience for me. Again, I feel very lucky to have had none of the negative side affects that people sometimes have when getting treatments. Other than the little itching I had during the initial treatment, my body took the Rituxan very well.
I looked at treatment as a step forward on the journey to recovery. I looked for the positive in the experience as much as possible, and by and large it was a good experience. The positive atmosphere of the Midwest Cancer Center has a lot to do with the positive aspect of the treatments. It is a beautiful, spacious, and homey environment for getting drugs pushed through the body.
Of course, I can't really write about Midwest Cancer Center without mentioning the tremendous nursing staff. At the risk of beating this theme to death, I was blessed to be surrounded by such a caring group of people. I know it's their job to give care, but I've been in plenty of situations where the nurses are not as friendly or warm.
Jan, Darci, Ethel, Heather, and Terri made my treatments bearable. It takes a special kind of nurse to care for people who have various forms and stages of cancer/leukemia, and these ladies are absolutely awesome. During my first rounds of treatment, my Fridays with this great group of nurses was a weekly highlight.
The goal for treatment was to try and get my kidney function back to normal. Rituxan and Cytoxan were supposed to help this, along with knocking out the leukemia. My white blood count fell immediately following the first treatment. That was the easy part.
After 10 weeks of Rituxan, my kidney function was not getting any better. The leukemia was in remission, but my kidney function was poor. and getting poorer. More on that in the next post.
Now, I'm in maintenance mode, which means I get a dose of Rituxan every eight weeks. This will continue for two years, after which I can officially call myself cancer free.
This part of my recovery is rock solid and going very well.
Treatment was a pretty uneventful experience for me. Again, I feel very lucky to have had none of the negative side affects that people sometimes have when getting treatments. Other than the little itching I had during the initial treatment, my body took the Rituxan very well.
I looked at treatment as a step forward on the journey to recovery. I looked for the positive in the experience as much as possible, and by and large it was a good experience. The positive atmosphere of the Midwest Cancer Center has a lot to do with the positive aspect of the treatments. It is a beautiful, spacious, and homey environment for getting drugs pushed through the body.
Of course, I can't really write about Midwest Cancer Center without mentioning the tremendous nursing staff. At the risk of beating this theme to death, I was blessed to be surrounded by such a caring group of people. I know it's their job to give care, but I've been in plenty of situations where the nurses are not as friendly or warm.
Jan, Darci, Ethel, Heather, and Terri made my treatments bearable. It takes a special kind of nurse to care for people who have various forms and stages of cancer/leukemia, and these ladies are absolutely awesome. During my first rounds of treatment, my Fridays with this great group of nurses was a weekly highlight.
The goal for treatment was to try and get my kidney function back to normal. Rituxan and Cytoxan were supposed to help this, along with knocking out the leukemia. My white blood count fell immediately following the first treatment. That was the easy part.
After 10 weeks of Rituxan, my kidney function was not getting any better. The leukemia was in remission, but my kidney function was poor. and getting poorer. More on that in the next post.
Now, I'm in maintenance mode, which means I get a dose of Rituxan every eight weeks. This will continue for two years, after which I can officially call myself cancer free.
This part of my recovery is rock solid and going very well.
Sunday, April 10, 2011
Treatments
So, there I was headed to my first treatment. It was the start of a new year, January 2010, and there was plenty to be hopeful about. I was dressed casually, I had a bag filled with a blanket, a book, and my iPod. I was ready to roll.
The Midwest Cancer Center is a beautiful building. Lots of glass, a waterfall, and just a really beautiful place to come and get healed. I checked in and waited for the nurse to come and take me back to get my blood pressure and my weight. After a brief wait, I got shuffled into the exam room to wait for Dr. Tarantolo. The only problem was Dr. Tarantolo didn't come in. Instead, it was a nurse practitioner.
I had dealt with an NP before. It was never a bad experience, but I never felt as confident and assured after a visit with the NP. On this day, I had my game face on. I was ready to face my first treatment. She came in, looked over my records and then asked the question of the day. "Have you been tested for Hepatitis B?" Excuse me?
This was the first time that Hepatitis B had ever come up. Before I could start treatment, I had to be tested for Hepatitis B. I didn't remember this coming up with anyone before, but I figured with as much blood that I had drawn from me over the previous years, surely someone had checked for this. Despite having my game face on for treatment, it was beginning to sound like I wouldn't be starting after all.
For the NP it was an open and shut case. No Hepatitis B test, no treatment, time to move on to the next patient. I went out to the treatment area and sat down to get ready for the blood draw that would be used to check for Hepatitis B. I thought it was odd that the NP wasn't interested in checking with my primary doctor. I had mentioned it, but she said since it wasn't in my records, there wasn't any use in calling my primary doctor. That didn't work for me, so I asked the appointment secretary, Terri, if she would call my primary.
Terri was the first friend I made at the cancer center. She was happy to make the call for me and find out if I had ever been tested for Hepatitis B. It turns out that I hadn't been tested before, but now we knew for sure, so while I wasn't happy that we weren't getting started, I felt better knowing that we had all the facts before moving forward.
As expected, the Hepatitis B test came back negative, so the following week I was back on for treatment. I made my second trip to the cancer center, met with Dr. Tarantolo, and he laid out the plan. I would have six weeks of Rituxan, followed by a couple weeks of Rituxan and Cytoxan. We talked about side-effects, which with the Rituxan would be minimal.
So, with our visit over, it was out to the treatment area. I grabbed a recliner with my back to the south window. Darci was the first nurse I had, and she explained what she would be doing. First, I got some Tylenol to keep my stomach settled. After I took the two Tylenol, it was time to fire up the IV cocktail of Benadryl and Decadron. This little preamble would prepare my system for the Rituxan. The Benadryl made me drowsy and gave me a buzz I hadn't felt since my drinking days. The pre-meds took about 30 minutes to administer.
Now it was time to fire up the Rituxan.
The Midwest Cancer Center is a beautiful building. Lots of glass, a waterfall, and just a really beautiful place to come and get healed. I checked in and waited for the nurse to come and take me back to get my blood pressure and my weight. After a brief wait, I got shuffled into the exam room to wait for Dr. Tarantolo. The only problem was Dr. Tarantolo didn't come in. Instead, it was a nurse practitioner.
I had dealt with an NP before. It was never a bad experience, but I never felt as confident and assured after a visit with the NP. On this day, I had my game face on. I was ready to face my first treatment. She came in, looked over my records and then asked the question of the day. "Have you been tested for Hepatitis B?" Excuse me?
This was the first time that Hepatitis B had ever come up. Before I could start treatment, I had to be tested for Hepatitis B. I didn't remember this coming up with anyone before, but I figured with as much blood that I had drawn from me over the previous years, surely someone had checked for this. Despite having my game face on for treatment, it was beginning to sound like I wouldn't be starting after all.
For the NP it was an open and shut case. No Hepatitis B test, no treatment, time to move on to the next patient. I went out to the treatment area and sat down to get ready for the blood draw that would be used to check for Hepatitis B. I thought it was odd that the NP wasn't interested in checking with my primary doctor. I had mentioned it, but she said since it wasn't in my records, there wasn't any use in calling my primary doctor. That didn't work for me, so I asked the appointment secretary, Terri, if she would call my primary.
Terri was the first friend I made at the cancer center. She was happy to make the call for me and find out if I had ever been tested for Hepatitis B. It turns out that I hadn't been tested before, but now we knew for sure, so while I wasn't happy that we weren't getting started, I felt better knowing that we had all the facts before moving forward.
As expected, the Hepatitis B test came back negative, so the following week I was back on for treatment. I made my second trip to the cancer center, met with Dr. Tarantolo, and he laid out the plan. I would have six weeks of Rituxan, followed by a couple weeks of Rituxan and Cytoxan. We talked about side-effects, which with the Rituxan would be minimal.
So, with our visit over, it was out to the treatment area. I grabbed a recliner with my back to the south window. Darci was the first nurse I had, and she explained what she would be doing. First, I got some Tylenol to keep my stomach settled. After I took the two Tylenol, it was time to fire up the IV cocktail of Benadryl and Decadron. This little preamble would prepare my system for the Rituxan. The Benadryl made me drowsy and gave me a buzz I hadn't felt since my drinking days. The pre-meds took about 30 minutes to administer.
Now it was time to fire up the Rituxan.
Saturday, March 26, 2011
A Little More Catch Up
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.
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.
Subscribe to:
Posts (Atom)