Once the wreckage from my September train wreck was cleared away, it was time to start dialysis. I had myself convinced that dialysis was a death sentence. Even with all the drama surrounding my ER visit and the pronouncement that dialysis was necessary, I held out hope that it would not be permanent. I was encouraged by the fact that the day I got my catheter, I did not get a fistula. Maybe the catheter would just be part of a short term plan to help my kidneys get better.
I had dialysis within a few hours of getting my catheter. My first session was in my room. The first dialysis nurse did her best to scare the crap out of me about how delicate my newly placed catheter was. If I wasn't careful and bumped it, I could bleed to death in four minutes. Really? Four minutes? That was all my wife needed to hear to plant fear in her mind! She has been reluctant to get too close to me on that side of me for fear of hurting me.
The catheter is a pretty scary looking thing, dangling out of the right side of my chest like it does. It's just a short drive to my heart, which is scary enough, I guess, but I was having trouble believing I could bleed out so quickly if it got bumped.
The nurses wheeled me down to Bergan's dialysis area for Friday's dialysis session. I wasn't feeling particularly well still. My stomach was doing flip-flops whenever I ate and even a bit during dialysis. Dr. Frock told me I would probably notice a pretty drastic improvement in how I felt after a couple weeks of dialysis. He also told me that I would need dialysis three days a week. Three days a week?? What about work? What about traveling? In just a matter of a couple of days, this train wreck was going to change my life in ways I hadn't considered.
Knowing I was a pretty stubborn guy, Dr. Frock would not approve my release from the hospital until I had a schedule established with a dialysis clinic. So, on Friday, the Bergan social worker tried to put something together for us. We agreed on a clinic and my preferred days, but I was at the mercy of the clinic and their available times. I was also at the mercy of the schedulers, who only worked until 2:30pm on Fridays.
By 4pm Friday it was clear that I wouldn't be set up at a clinic. I was going to be stuck in the hospital for the weekend. Bogus!
Saturday morning was my third dialysis day. This time my session was in my room again. It was an early session, so I was happy to get it over with, so I could watch Nebraska play football that afternoon without any dialysis distractions. During my dialysis session Dr. Frock popped in to see how I was doing. I told him we struck out at getting set up at a clinic, but we had a plan. We just needed to hear back from the clinic.
Surprisingly, Dr. Frock said there was no reason to stay cooped up in the hospital. He realized everyone did their part to get me setup, and he didn't think it was right that I be stuck in the hospital just because we hadn't heard from the dialysis clinic. I was going home.
Now, anyone who has stayed in a hospital knows, getting out isn't always the fastest process! I had plenty of time to get dressed, pack up all the beautiful flowers I received, and text/e-mail family to let them know I was going home. After almost two hours, all the paperwork was in place and I was on the way home.
I was leaving the hospital in much better shape than I was when I went in. That was fine by me! I was also armed with some new prescriptions and a resolve to make a three-day per week dialysis schedule work with work.
Saturday, April 30, 2011
Saturday, April 23, 2011
The Train Wreck
Armed with my blood pressure medicine, I was ready to start trying to help my kidneys. I was still holding out some hope that I could avoid dialysis. I didn't know if that was possible, but that was my plan.
I woke up on September 18 feeling kind of queasy. For whatever reason, the maintenance treatments were really upsetting my stomach. Eating didn't help much, and water just tasted awful, but the compazine seemed to help, so I took one.
After I ate my breakfast, I took my blood pressure pill and got ready for work. I exercised at noon, which was normal, and then I had lunch. My stomach felt upset again, so I took another compazine. Timing-wise I was fine, so I didn't think twice about it.
Around 2:30pm I noticed that I was having problem catching my breath. There are times when I sit at my desk and work without any interaction with co-workers (this doesn't happen often enough sometimes!), so I hadn't tried talking much that afternoon.
I called Jeannie after about 10 minutes of this. I'm sure I didn't sound great, but I had never had a reaction to medicine before, so I didn't really know what was happening to me. I called Dr. Frock's office and explained to the nurse that I thought I might be having a reaction to the blood pressure medicine I was taking. That seemed right to me, because I had taken compazine before with no problem.
When Dr. Frock called back, I was sounding a bit like Snagglepuss, slobbering my words. I was able to get across to him that something was going on, and I needed some guidance. He said it sounded like an allergic reaction that would pass. He asked me if my tongue felt like it was swelling up, because that would be a problem. Well, I locked onto that and started feeling my tongue. I couldn't tell if it was swollen. How can you tell?
Dr. Frock's advice to me was to go to the ER if I thought my tongue was swollen, or if I was afraid. Whatever knowledge I lacked about the swelling of my tongue, I more than made up with just being generally afraid! I hung up with him and went into see a group of co-workers to see if they thought I looked different.
Sue and Tara thought my face looked swollen, and of course I was still slobbering my speech. I was pretty sure I wanted to go to the ER. The only decision left to make was whether or not I would drive myself. I didn't think I would have a problem driving, but I was afraid that this thing going on inside of me would get worse. I asked Sue if she would drive me to Bergan. It wasn't the closest hospital, but it was a place I was familiar with. My first ER visit was about to happen.
I don't know if Sue was worried, but if she was, she didn't let on. I gathered up my things and walked out of the office. I told one more co-worker that I was leaving and that was that. I got into Sue's truck and went to call Jeannie to let her know what was happening. This was pretty comical.
Sue is a fine driver, but her truck rides rougher than my car, so as I'm trying to not freak out about what's happening to me, I'm trying to dial Jeannie's work number from my cell phone. Jeannie's office number gets answered first by an auto-attendant that prompts you to press 1, and then enter a 4-digit number. It took me almost five minutes to get her main number dialed correctly with all the bouncing around we were doing. Every time I got the number dialed right, though, I would mess up the 4-digit number. Bogus!
After what seemed like an eternity, but was probably only 10 minutes, I dialed all the numbers correctly. Jackpot! Fortunately, she was at her desk! I calmly slobbered out that we were going to Bergan. I told her what I was experiencing and that other than breathing and talking funny I was feeling okay. She said she would leave work and meet us at Bergan. For the rest of the drive, my breathing and slobbering speech would get better and then get worse.
Once we were at Bergan, I got checked in right away. There was no one else waiting, so I thought this was going to be okay. A nurse came to get me before Jeannie got there, so Sue waited for her. Sue was great for me during this little adventure.
The time in the ER was slow and scary. I had plenty of attention, but the focus was on determining if I was having a stroke. My face had the look, with my right side positioned up higher than my left. When Jeannie arrived, I was laying back, trying hard to breath normally. Instead of normal quiet-we-take-it-for-granted-breathing, I made this low moaning sound with every breath. My voice evolved from Snagglepuss to Bullwinkle while we waited for this to get resolved.
My primary, Dr. Pajnigar, came in about an hour into my time in the ER. By this time the crazy breathing and cartoon voice was coming and going as if I was a pregnant woman having contractions. Jeannie and I laughed about that as the pattern revealed itself. Just before Dr. Pajnigar walked in, I had one of my normal moments, but as soon as he asked how I was feeling, Bullwinkle came alive again, with the added bonus of my teeth grinding. This was something new.
They had done a CT scan earlier, and I thought I heard it turned out fine. Dr. Pajnigar said that wasn't the case. There was a shadow or something on my head. So, even though I was convinced this was an allergic reaction, no one was ready to call it that, so I got a visit from the neurologist. I don't remember her name, but she was quite the cut-up. It was exactly what I needed at that moment.
She did all the typical things, shining her light in my eyes, having me pull her hands with both of my hands. She didn't think the spot on my head was fresh, so as she eye-balled my scary looking face, my bulging neck muscles and generally stiff as a board appearance (I don't know if she thought my Bullwinkle voice was cool), she determined that I was having a reaction to medicine, but it was the compazine, not the blood pressure medicine.
Next thing you know, the nurse was pushing benadryl into me. Within 30 seconds Snagglepuss, Bullwinkle, and any other cartoon characters I resembled that afternoon were gone. I was back to normal. I would need to be admitted, but I was going to be fine.
The other shoe in this deal was that my lack of kidney function was probably the source of all this drama. Dr. Pajnigar was pretty stern with me about needing dialysis when he had stopped by earlier in all of this. They had me now. By the time Dr. Frock came to see me and make it official that evening, I knew that the next chapter in this adventure was going to be dialysis.
My Wednesday adventure was the opening door to more fun on Thursday. I was going to get a catheter after I got an EEG and an MRI. And, I was going to have my first dialysis treatment. So much for my plan!
I woke up on September 18 feeling kind of queasy. For whatever reason, the maintenance treatments were really upsetting my stomach. Eating didn't help much, and water just tasted awful, but the compazine seemed to help, so I took one.
After I ate my breakfast, I took my blood pressure pill and got ready for work. I exercised at noon, which was normal, and then I had lunch. My stomach felt upset again, so I took another compazine. Timing-wise I was fine, so I didn't think twice about it.
Around 2:30pm I noticed that I was having problem catching my breath. There are times when I sit at my desk and work without any interaction with co-workers (this doesn't happen often enough sometimes!), so I hadn't tried talking much that afternoon.
I called Jeannie after about 10 minutes of this. I'm sure I didn't sound great, but I had never had a reaction to medicine before, so I didn't really know what was happening to me. I called Dr. Frock's office and explained to the nurse that I thought I might be having a reaction to the blood pressure medicine I was taking. That seemed right to me, because I had taken compazine before with no problem.
When Dr. Frock called back, I was sounding a bit like Snagglepuss, slobbering my words. I was able to get across to him that something was going on, and I needed some guidance. He said it sounded like an allergic reaction that would pass. He asked me if my tongue felt like it was swelling up, because that would be a problem. Well, I locked onto that and started feeling my tongue. I couldn't tell if it was swollen. How can you tell?
Dr. Frock's advice to me was to go to the ER if I thought my tongue was swollen, or if I was afraid. Whatever knowledge I lacked about the swelling of my tongue, I more than made up with just being generally afraid! I hung up with him and went into see a group of co-workers to see if they thought I looked different.
Sue and Tara thought my face looked swollen, and of course I was still slobbering my speech. I was pretty sure I wanted to go to the ER. The only decision left to make was whether or not I would drive myself. I didn't think I would have a problem driving, but I was afraid that this thing going on inside of me would get worse. I asked Sue if she would drive me to Bergan. It wasn't the closest hospital, but it was a place I was familiar with. My first ER visit was about to happen.
I don't know if Sue was worried, but if she was, she didn't let on. I gathered up my things and walked out of the office. I told one more co-worker that I was leaving and that was that. I got into Sue's truck and went to call Jeannie to let her know what was happening. This was pretty comical.
Sue is a fine driver, but her truck rides rougher than my car, so as I'm trying to not freak out about what's happening to me, I'm trying to dial Jeannie's work number from my cell phone. Jeannie's office number gets answered first by an auto-attendant that prompts you to press 1, and then enter a 4-digit number. It took me almost five minutes to get her main number dialed correctly with all the bouncing around we were doing. Every time I got the number dialed right, though, I would mess up the 4-digit number. Bogus!
After what seemed like an eternity, but was probably only 10 minutes, I dialed all the numbers correctly. Jackpot! Fortunately, she was at her desk! I calmly slobbered out that we were going to Bergan. I told her what I was experiencing and that other than breathing and talking funny I was feeling okay. She said she would leave work and meet us at Bergan. For the rest of the drive, my breathing and slobbering speech would get better and then get worse.
Once we were at Bergan, I got checked in right away. There was no one else waiting, so I thought this was going to be okay. A nurse came to get me before Jeannie got there, so Sue waited for her. Sue was great for me during this little adventure.
The time in the ER was slow and scary. I had plenty of attention, but the focus was on determining if I was having a stroke. My face had the look, with my right side positioned up higher than my left. When Jeannie arrived, I was laying back, trying hard to breath normally. Instead of normal quiet-we-take-it-for-granted-breathing, I made this low moaning sound with every breath. My voice evolved from Snagglepuss to Bullwinkle while we waited for this to get resolved.
My primary, Dr. Pajnigar, came in about an hour into my time in the ER. By this time the crazy breathing and cartoon voice was coming and going as if I was a pregnant woman having contractions. Jeannie and I laughed about that as the pattern revealed itself. Just before Dr. Pajnigar walked in, I had one of my normal moments, but as soon as he asked how I was feeling, Bullwinkle came alive again, with the added bonus of my teeth grinding. This was something new.
They had done a CT scan earlier, and I thought I heard it turned out fine. Dr. Pajnigar said that wasn't the case. There was a shadow or something on my head. So, even though I was convinced this was an allergic reaction, no one was ready to call it that, so I got a visit from the neurologist. I don't remember her name, but she was quite the cut-up. It was exactly what I needed at that moment.
She did all the typical things, shining her light in my eyes, having me pull her hands with both of my hands. She didn't think the spot on my head was fresh, so as she eye-balled my scary looking face, my bulging neck muscles and generally stiff as a board appearance (I don't know if she thought my Bullwinkle voice was cool), she determined that I was having a reaction to medicine, but it was the compazine, not the blood pressure medicine.
Next thing you know, the nurse was pushing benadryl into me. Within 30 seconds Snagglepuss, Bullwinkle, and any other cartoon characters I resembled that afternoon were gone. I was back to normal. I would need to be admitted, but I was going to be fine.
The other shoe in this deal was that my lack of kidney function was probably the source of all this drama. Dr. Pajnigar was pretty stern with me about needing dialysis when he had stopped by earlier in all of this. They had me now. By the time Dr. Frock came to see me and make it official that evening, I knew that the next chapter in this adventure was going to be dialysis.
My Wednesday adventure was the opening door to more fun on Thursday. I was going to get a catheter after I got an EEG and an MRI. And, I was going to have my first dialysis treatment. So much for my plan!
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.
Sunday, April 3, 2011
The Other Shoe
So, there I was; cruising along with CLL, with no symptoms keeping me from living a normal life. I saw Dr. Tarantolo quarterly, and everything seemed fine. I was exercising regularly and felt pretty good.
When I went in for my yearly physical back in 2009, my primary doctor suggested I see a nephrologist. My creatinine was higher than normal, so it wouldn't hurt to see a kidney doctor. Enter Dr. James Frock. I began seeing Dr. Frock quarterly too, and he began educating me on my kidney function. He had me get a kidney biopsy, so we could see what was happening to cause my creatinine to be so high.
Initially, both doctors thought the CLL was impacting my kidneys. This would've been odd, but not unheard of. By November, Dr. Tarantolo and I were talking about treatment for my CLL. The goal was to stop the CLL from causing further damage to my kidneys. Even though there were no other manifestations of the CLL (I was still a stage zero), we decided it was time to go into treatment mode. I would need a port.
Up to this point, I was updating my family as things happened with my leukemia. Since there wasn't much going on with it, I often went months without talking about it. When we all got together for Thanksgiving, I brought my family up to date on what was happening. I think I was the downer of the day, but I was truly excited about getting treatment, because it meant we were taking action. After three years of monitoring this situation, we were moving forward with a plan. I was looking forward to this.
Dr. Tarantolo wanted me to have a PET scan prior to starting treatment, so he would have before and after pictures to determine the effectiveness of the treatments I would receive.
This is as good a time as any to pause and write a few words about Blue Cross Blue Shield of Nebraska, the insurance I had from work. In general, they have been good for me. I never experienced any problems with them that you sometimes hear from people. This was another area in which I felt lucky.
My luck ran into a little hiccup when Dr. Tarantolo asked for the PET scan. It was rejected. BCBS didn't have a problem with me having the scan, you understand. They just weren't going to pay for it. Apparently, their experts felt that having the scan before treatment was investigative, and as a result, not necessary. That was true in a way. We were going to start the treatments with or without the PET scan. All we wanted was a before picture to compare my post-treatment PET scan to. It made sense to everyone but BCBS.
While all this back and forth was going on with the insurance company, I went in to have a port placed in my chest between Christmas and New Years. That went well, and I was ready to go in for my first treatment after the first of the year.
The goal was to rid my body of the leukemia that was keeping my white blood cells from leaving my system as they died off. It was also important for my kidneys to show some improvement from this treatment. I was scheduled for 10 weeks of Rituxan, a drug that goes directly to the leukemia and knocks it out. Compared to a chemo drug, Rituxan is easier on a person's body than traditional chemotherapy. Another lucky break for me. I went to the first treatment with a blanket, a book, my iPod, and some nervousness about what to expect.
Since treatment would take several hours to administer, Dr. Tarantolo suggested I get my treatment at the Midwest Cancer Center. I had previously been seeing him at an office next to Bergan, but he told me the treatment area was kind of depressing. Midwest was a new facility with lots of windows, and a much more upbeat environment. That sounded good to me, so it was off to my first treatment.
When I went in for my yearly physical back in 2009, my primary doctor suggested I see a nephrologist. My creatinine was higher than normal, so it wouldn't hurt to see a kidney doctor. Enter Dr. James Frock. I began seeing Dr. Frock quarterly too, and he began educating me on my kidney function. He had me get a kidney biopsy, so we could see what was happening to cause my creatinine to be so high.
Initially, both doctors thought the CLL was impacting my kidneys. This would've been odd, but not unheard of. By November, Dr. Tarantolo and I were talking about treatment for my CLL. The goal was to stop the CLL from causing further damage to my kidneys. Even though there were no other manifestations of the CLL (I was still a stage zero), we decided it was time to go into treatment mode. I would need a port.
Up to this point, I was updating my family as things happened with my leukemia. Since there wasn't much going on with it, I often went months without talking about it. When we all got together for Thanksgiving, I brought my family up to date on what was happening. I think I was the downer of the day, but I was truly excited about getting treatment, because it meant we were taking action. After three years of monitoring this situation, we were moving forward with a plan. I was looking forward to this.
Dr. Tarantolo wanted me to have a PET scan prior to starting treatment, so he would have before and after pictures to determine the effectiveness of the treatments I would receive.
This is as good a time as any to pause and write a few words about Blue Cross Blue Shield of Nebraska, the insurance I had from work. In general, they have been good for me. I never experienced any problems with them that you sometimes hear from people. This was another area in which I felt lucky.
My luck ran into a little hiccup when Dr. Tarantolo asked for the PET scan. It was rejected. BCBS didn't have a problem with me having the scan, you understand. They just weren't going to pay for it. Apparently, their experts felt that having the scan before treatment was investigative, and as a result, not necessary. That was true in a way. We were going to start the treatments with or without the PET scan. All we wanted was a before picture to compare my post-treatment PET scan to. It made sense to everyone but BCBS.
While all this back and forth was going on with the insurance company, I went in to have a port placed in my chest between Christmas and New Years. That went well, and I was ready to go in for my first treatment after the first of the year.
The goal was to rid my body of the leukemia that was keeping my white blood cells from leaving my system as they died off. It was also important for my kidneys to show some improvement from this treatment. I was scheduled for 10 weeks of Rituxan, a drug that goes directly to the leukemia and knocks it out. Compared to a chemo drug, Rituxan is easier on a person's body than traditional chemotherapy. Another lucky break for me. I went to the first treatment with a blanket, a book, my iPod, and some nervousness about what to expect.
Since treatment would take several hours to administer, Dr. Tarantolo suggested I get my treatment at the Midwest Cancer Center. I had previously been seeing him at an office next to Bergan, but he told me the treatment area was kind of depressing. Midwest was a new facility with lots of windows, and a much more upbeat environment. That sounded good to me, so it was off to my first treatment.
Subscribe to:
Posts (Atom)