Round and round Updated June 13, 2018 10:00 PM
May 27, 2018 10:00pm Back to In the Beginning
I had a better name for this post, but unfortunately it came to me in the middle of the night and I forgot it. It has been a juggling act with the pain meds. Between the nerve pain down my limbs and numbness in hands and toes that's partially treated with the gabapentin; and the pain in my pelvis and hip that goes to my knee that is alieved by the tizanadine (that I can't take during the day) it has been a real roller coaster. Tried to take Tylenol during the day to alleviate the hip pain, but that's been of marginal help. Haven't been able to concentrate at work, plus the loss of sensation makes it difficult to type and even hold a pen, let alone take meeting notes fast enough.
Dr. V finally told me last week to go on disability. Walking any distance is difficult at times due to the hip pain; barely made the circuit through Costco yesterday. Lined up for another CT scan on Wednesday; the right side of the pubic bone where it is fractured is starting to protrude to where I can feel it about an inch from where it should be. Dr. V says the tumor is likely pressing it forward. He doesn't know if the tumor is growing or inflamed from the immunotherapy. I just love it when he doesn't know and has no strategy. I don't think the CT will tell him the difference either. Seems if it is protruding like that it is more than fractured and more like splintered, but the CT will show that.
I had another round of immunotherapy last Tuesday and some of the nerve pain subsided until today, but I can also feel when the Gabapentin is wearing off and time to pop another. The pain is always in my wrist and lower forearm, but starts to creep up my arm. Instead of the pain, my temperature wobbled between 97.5 and 100.1. Still not as bad as the swings in temp as during the first two rounds.
Had a sleep study due to the drop in my oxygen level in my sleep during my last hospital stay. Seemed like the worst night's sleep ever, with wires coming off every part, light coming through the window, and the nurse's TV droning all night. Nurse said in the morning that I had sleep apnea, but that I'd have to hear it from my Dr. I don't know how she knew....didn't seem like I'd slept at all.
Most nights I can't sleep without the tizanadine and when that doesn't work, there's CBD that does it.
May 29, 2018 7:30pm
Overdid it yesterday....only walked about a half mile total, but that sure was enough that nothing is helping the hip and leg pain today. Barely taking 9" steps today and even the bathroom looks miles away. Can't find a comfortable position on the couch or bed.
May 30, 2018 10:00am
Looking at some treatments for the cancer in the pelvic bone and Mikki found this: https://www.hindawi.com/journals/aorth/2015/525363/
Very promising alternatives. Went to SDMI for the CT Scan today.
May 31, 2018 5:00pm
On June 8th, went to Dr. Damaj's (internal medicine primary care doc) for a review of the sleep study results. Looks like I'm getting a CPAP machine. Like I already can't sleep well from the pain, I need this piece of crap stuck on my face. It better be quiet and portable, since half the time I have to get up and sleep in the family room recliner. I even have to keep the ceiling fan on low because it makes too much noise at a medium speed.
Went to see the radiologist at CCCN on Monday, June 11th. I also had to get a blood test for the wrap-up of the trial and prep for the chemo. The radiologist, Dr. Farzin, is out for 3 weeks, so we got Dr. Rost, a retired oncology radiologist standing in. Best patient interaction I've ever seen. He sat close, leaned in, and listened to everything I said without interruption. Great sense of humor too and we bounced some witticisms off each other during the session. He actually checked out the area where I thought the pubic bone was pushing out, but he said it was a lymph node. He thought that with the radiation, I could be pain free in a month or so. The radiation is well targeted and my first session is for targeting using scans and tattoos to mark the alignment points. He said the chemo would take care of the lung and liver. He thinks I could keep the right kidney if the tumor can be shrunk to expose the ureter. I think he is overly optimistic on this point and Kassahun is still sharpening his scalpels.
On June 12th I went back for a MAGA scan as part of the trial close out - it is a scan of the heart. Pretty hard to lie there for 10 minutes on a hard flat surface, but at least I had support under my knees, which helps alleviate the hip pain.
The next day, I had to stop at one of Kassahun's offices for a dressing and nephrostomy stabilizer clip change. Told the receptionist I wanted a refund for the last dressing change that fell apart in 3 hours. The nurse that did this replacement did a great job and told me I can come back anytime for supplies. Seems it takes forever to drag information out of this bunch - I should have known all this in November. Fortunately got out of there early, so I could get across town to CCCN for the radiology measurement scan appointment. Briefly saw Dr. Rost in the hall for a quick exchange of quips. This scan required I lie flat with legs down flat the whole time. I was trying every trick in the book to not think about the pain during what seemed like forever. Couldn't take the tizanidine this morning or I would have been knocked out. Took one after the scan. I was surprised at the sting of the tattooing and can't imagine how people do big images on sensitive places without a quart of whiskey in them. The radiation tech said that for the next appointment I will want to be fully doped up. Great. Maybe the chemo will mitigate some of the pain in the meantime.
I had a half hour before the next appointment with Dr V on the other side of the building. Mikki was at our house with Ellie and waiting for Andrew to drive them all to CCCN. They just made it, as nurse Elizabeth came to get me 5 minutes early. Mikki got there after Elizabeth took vitals and I was waiting for Dr. V. The tizanidine started to kick in and I was crashing in the chair. Finally Dr. V comes in and we talk about the Knights (his neighbor has a connection and got him a team-signed jersey), the treatment, drugs that will be added and ones that won't be included that were in the last round of chemo. He talked about side effects and mentioned diarrhea. I said that wouldn't be a problem as I will just keep taking the morphine without the Miralax. He got a laugh out of that. He said there will be 4 cycles of two treatments each on the first day and the eighth day, then the next cycle starts on day 21. This time I don't have to worry about lowered red blood cell counts, opportunistic infections, or avoiding fresh fruit. He also said I shouldn't try to lose any more weight. I just got under 210 and was looking forward to getting out of the 200s.
Elizabeth took me to the treatment room and turned me over to nurse Curtis. I've had him do my treatments before; he's good. He had a hard time waking me up a couple times, but finally one of the drips took a long time and I was able to pass out for long enough to wake up refreshed. Didn't finish till almost 3:30. Felt good enough to drive home. Good thing, because Mikki and Andrew were across town at Lisa's and it would have taken an hour for them to pack up Ellie and come get me. So far so good tonight on side effects.
Next: Wash, Rinse, Repeat
I had a better name for this post, but unfortunately it came to me in the middle of the night and I forgot it. It has been a juggling act with the pain meds. Between the nerve pain down my limbs and numbness in hands and toes that's partially treated with the gabapentin; and the pain in my pelvis and hip that goes to my knee that is alieved by the tizanadine (that I can't take during the day) it has been a real roller coaster. Tried to take Tylenol during the day to alleviate the hip pain, but that's been of marginal help. Haven't been able to concentrate at work, plus the loss of sensation makes it difficult to type and even hold a pen, let alone take meeting notes fast enough.
Dr. V finally told me last week to go on disability. Walking any distance is difficult at times due to the hip pain; barely made the circuit through Costco yesterday. Lined up for another CT scan on Wednesday; the right side of the pubic bone where it is fractured is starting to protrude to where I can feel it about an inch from where it should be. Dr. V says the tumor is likely pressing it forward. He doesn't know if the tumor is growing or inflamed from the immunotherapy. I just love it when he doesn't know and has no strategy. I don't think the CT will tell him the difference either. Seems if it is protruding like that it is more than fractured and more like splintered, but the CT will show that.
I had another round of immunotherapy last Tuesday and some of the nerve pain subsided until today, but I can also feel when the Gabapentin is wearing off and time to pop another. The pain is always in my wrist and lower forearm, but starts to creep up my arm. Instead of the pain, my temperature wobbled between 97.5 and 100.1. Still not as bad as the swings in temp as during the first two rounds.
Had a sleep study due to the drop in my oxygen level in my sleep during my last hospital stay. Seemed like the worst night's sleep ever, with wires coming off every part, light coming through the window, and the nurse's TV droning all night. Nurse said in the morning that I had sleep apnea, but that I'd have to hear it from my Dr. I don't know how she knew....didn't seem like I'd slept at all.
Most nights I can't sleep without the tizanadine and when that doesn't work, there's CBD that does it.
May 29, 2018 7:30pm
Overdid it yesterday....only walked about a half mile total, but that sure was enough that nothing is helping the hip and leg pain today. Barely taking 9" steps today and even the bathroom looks miles away. Can't find a comfortable position on the couch or bed.
May 30, 2018 10:00am
Looking at some treatments for the cancer in the pelvic bone and Mikki found this: https://www.hindawi.com/journals/aorth/2015/525363/
Very promising alternatives. Went to SDMI for the CT Scan today.
May 31, 2018 5:00pm
Wow. Nerve pain in arms and legs almost completely gone for first time since starting immunotherapy in early April. Just numbness in right thumb, left fingers and all toes. Pelvic pain still a bitch, but taking 4 different pain relievers helps a bit. Of course, that knocks me out most of the day. Nurse Elizabeth said the nerve pain would diminish when I saw her this week. Didn't expect it so fast.
June 13, 2018 10:00 PM
Probably should have started another entry, but an update is overdue and I don't feel like doing extra work. Been a busy couple of weeks - getting FMLA and Short Term Disability forms submitted, corrected and resubmitted. Finally had to fill in the medical provider's portion of the FMLA form and just have Dr V sign it this past Monday.
I went back to SDMI on Friday June 1st to get the CT scan report and images. Not good news on the report - new spots in lung(very tiny), liver(ping pong ball sized), lymph nodes, plus the bone cancer has doubled in size to 10 cm. Only part that's behaving is the bladder tumor itself - that hasn't changed.
On June 4th, I went to see Dr. Parikh the pain management doc for refills. He's going on vacation till the end of the month and I was running out of Gabapentin; so got that and the Tizanidine refilled. Got plenty of morphine left, but started taking it again. Some days I take all three plus Tylenol and hash oil and the pain is finally mostly gone. Dr. Parikh offered a nerve block - surgery to inject painkiller into the affected area. Told him I'd rather be able to stop the meds at any time to take stock of the pain, else I don't know how bad it is. Plus not feeling any pain all the time could result in overuse and further damage. I don't know how a pain management guy wouldn't be pushing that concept, but when you just have a hammer....
On June 6, we met with Dr V. He said we are stopping the trial, there were just a couple tests needed to close out my participation. We went over the CT scan report, which we already had read. He threw out three recommendations - chemo and radiation vs. a couple of other trials. He asked what we wanted to do and I threw it back at him as the expert and asked for his recommendation. Mikki and I were totally on board with the chemo and radiation, but I wanted to hear it from him and that's what he recommended. It would tie us up for two or three weeks.
As we were talking to Cancer Treatment Centers of America for a second opinion, but going to Arizona was out for the near term. I met with CTCA's nurse over the phone on the 7th to go over history, etc. and let them know about the possible schedule issue. Side note - Lisa and Rabbi took me to the Golden Knights final Stanley Cup game that night. Even though we parked close and were able to take an elevator to the 5th level where their friend rented a suite; there was a fair bit of walking and standing. Paid for that the next day, which I spent on the couch pretty well smashed on painkillers.
June 13, 2018 10:00 PM
Probably should have started another entry, but an update is overdue and I don't feel like doing extra work. Been a busy couple of weeks - getting FMLA and Short Term Disability forms submitted, corrected and resubmitted. Finally had to fill in the medical provider's portion of the FMLA form and just have Dr V sign it this past Monday.
I went back to SDMI on Friday June 1st to get the CT scan report and images. Not good news on the report - new spots in lung(very tiny), liver(ping pong ball sized), lymph nodes, plus the bone cancer has doubled in size to 10 cm. Only part that's behaving is the bladder tumor itself - that hasn't changed.
On June 4th, I went to see Dr. Parikh the pain management doc for refills. He's going on vacation till the end of the month and I was running out of Gabapentin; so got that and the Tizanidine refilled. Got plenty of morphine left, but started taking it again. Some days I take all three plus Tylenol and hash oil and the pain is finally mostly gone. Dr. Parikh offered a nerve block - surgery to inject painkiller into the affected area. Told him I'd rather be able to stop the meds at any time to take stock of the pain, else I don't know how bad it is. Plus not feeling any pain all the time could result in overuse and further damage. I don't know how a pain management guy wouldn't be pushing that concept, but when you just have a hammer....
On June 6, we met with Dr V. He said we are stopping the trial, there were just a couple tests needed to close out my participation. We went over the CT scan report, which we already had read. He threw out three recommendations - chemo and radiation vs. a couple of other trials. He asked what we wanted to do and I threw it back at him as the expert and asked for his recommendation. Mikki and I were totally on board with the chemo and radiation, but I wanted to hear it from him and that's what he recommended. It would tie us up for two or three weeks.
As we were talking to Cancer Treatment Centers of America for a second opinion, but going to Arizona was out for the near term. I met with CTCA's nurse over the phone on the 7th to go over history, etc. and let them know about the possible schedule issue. Side note - Lisa and Rabbi took me to the Golden Knights final Stanley Cup game that night. Even though we parked close and were able to take an elevator to the 5th level where their friend rented a suite; there was a fair bit of walking and standing. Paid for that the next day, which I spent on the couch pretty well smashed on painkillers.
On June 8th, went to Dr. Damaj's (internal medicine primary care doc) for a review of the sleep study results. Looks like I'm getting a CPAP machine. Like I already can't sleep well from the pain, I need this piece of crap stuck on my face. It better be quiet and portable, since half the time I have to get up and sleep in the family room recliner. I even have to keep the ceiling fan on low because it makes too much noise at a medium speed.
Went to see the radiologist at CCCN on Monday, June 11th. I also had to get a blood test for the wrap-up of the trial and prep for the chemo. The radiologist, Dr. Farzin, is out for 3 weeks, so we got Dr. Rost, a retired oncology radiologist standing in. Best patient interaction I've ever seen. He sat close, leaned in, and listened to everything I said without interruption. Great sense of humor too and we bounced some witticisms off each other during the session. He actually checked out the area where I thought the pubic bone was pushing out, but he said it was a lymph node. He thought that with the radiation, I could be pain free in a month or so. The radiation is well targeted and my first session is for targeting using scans and tattoos to mark the alignment points. He said the chemo would take care of the lung and liver. He thinks I could keep the right kidney if the tumor can be shrunk to expose the ureter. I think he is overly optimistic on this point and Kassahun is still sharpening his scalpels.
On June 12th I went back for a MAGA scan as part of the trial close out - it is a scan of the heart. Pretty hard to lie there for 10 minutes on a hard flat surface, but at least I had support under my knees, which helps alleviate the hip pain.
The next day, I had to stop at one of Kassahun's offices for a dressing and nephrostomy stabilizer clip change. Told the receptionist I wanted a refund for the last dressing change that fell apart in 3 hours. The nurse that did this replacement did a great job and told me I can come back anytime for supplies. Seems it takes forever to drag information out of this bunch - I should have known all this in November. Fortunately got out of there early, so I could get across town to CCCN for the radiology measurement scan appointment. Briefly saw Dr. Rost in the hall for a quick exchange of quips. This scan required I lie flat with legs down flat the whole time. I was trying every trick in the book to not think about the pain during what seemed like forever. Couldn't take the tizanidine this morning or I would have been knocked out. Took one after the scan. I was surprised at the sting of the tattooing and can't imagine how people do big images on sensitive places without a quart of whiskey in them. The radiation tech said that for the next appointment I will want to be fully doped up. Great. Maybe the chemo will mitigate some of the pain in the meantime.
I had a half hour before the next appointment with Dr V on the other side of the building. Mikki was at our house with Ellie and waiting for Andrew to drive them all to CCCN. They just made it, as nurse Elizabeth came to get me 5 minutes early. Mikki got there after Elizabeth took vitals and I was waiting for Dr. V. The tizanidine started to kick in and I was crashing in the chair. Finally Dr. V comes in and we talk about the Knights (his neighbor has a connection and got him a team-signed jersey), the treatment, drugs that will be added and ones that won't be included that were in the last round of chemo. He talked about side effects and mentioned diarrhea. I said that wouldn't be a problem as I will just keep taking the morphine without the Miralax. He got a laugh out of that. He said there will be 4 cycles of two treatments each on the first day and the eighth day, then the next cycle starts on day 21. This time I don't have to worry about lowered red blood cell counts, opportunistic infections, or avoiding fresh fruit. He also said I shouldn't try to lose any more weight. I just got under 210 and was looking forward to getting out of the 200s.
Elizabeth took me to the treatment room and turned me over to nurse Curtis. I've had him do my treatments before; he's good. He had a hard time waking me up a couple times, but finally one of the drips took a long time and I was able to pass out for long enough to wake up refreshed. Didn't finish till almost 3:30. Felt good enough to drive home. Good thing, because Mikki and Andrew were across town at Lisa's and it would have taken an hour for them to pack up Ellie and come get me. So far so good tonight on side effects.
Next: Wash, Rinse, Repeat
