Wash, rinse, repeat Updated 7/12/18 7:00PM
June 27, 2018 5:00pm Back to In the Beginning
Almost every day/week, same routine. Head over to CCCN, strip down, struggle to get on the zapper flatbed, get radiated front and back, climb off, get dressed go home. Go problem with the right leg a few days after the first round of chemo. Edema started blowing it up all the way to my foot. They sent me to get an ultrasound to ensure there were no blood clots involved. There weren't. Just another unique side effect. At least it started before I started the radiation treatments, else we wouldn't know which treatment was causing it. My next visit on that side of the house was with Kris the PA. He was no help in telling me how to mitigate the swelling, so I consulted with Dr. Google.
I tried elevation, but probably not long enough as I was in a fairly uncomfortable position. I tried a compression sock, but that made it worse. ($40 for those stupid socks!) Then I found another site that said to only use those socks when the swelling went down. Back to elevation during the night. Tried using two pillows, but the top one kept sliding off. However; the night before I measured both calves, and the left was 18 inches in circumference and the right was 20. By morning, the right was down to 18. Very uncomfortable way to sleep. The next night I used moving straps to tie the two pillows together and that worked well. The pillows are extremely firm, so they keep their shape. Had first tried two others that went completely flat when I put my legs on them.
Yesterday, I took the pain meds - tizanidine, gabapentin and morphine at 10 am, figuring the tizanidine would knock me out for a while, but would be coherent by the time I had to leave for radiation. I was in a haze on the couch. I got a call at 1:30 that woke me up from a dead sleep. The phone clock didn't change from 12:00pm when I looked at it. So I started making brunch, a pot of oatmeal with blueberries. It was done and cooling and I looked at the phone and the time suddenly switched to 2:15pm. Rushed out of the house, as much as hobbling with a cane and gimpy leg would allow, leaving the oatmeal on the counter. Called CCCN on the way to let them know I was running late. Got some teasing from the nurses and techs, and one said today, that it will take a while to live down.
Starting to get the timing of the pain meds right so that lying on the table doesn't hurt my pelvis so much. Too soon and they wear off; too late and they don't kick in. Just have to keep busy when I do take them so I don't fall asleep. They do make the scanner feel like it is swaying like a hammock when I close my eyes.
I found a site in WebMD that talked about the Tecentriq I was taking during the clinical trial. My treatment stopped a couple weeks after that with the same result in my bone tumors. I was probably lucky that the first round of chemo killed the cancer in the bladder tumor, else that likely would have grown during the trial.
In a couple weeks, I amgoing down to Phoenix to Cancer Treatment Centers of America for second opinions. By then the radiation will be over and the chemo will be left with one more treatment. They should be able to determine how well all this worked, although the docs at CCCN said it would take a few weeks for it all to work.
July 11, 2018
Woohoo. Finished radiation on Monday. They make you ring a bell, hand you a certificate of completion and a survey form. Threw those out, but took a picture of the certification just for here.
Side effects of chemo are starting to show themselves.
I finally got Dr V to give me a referral last week to a lymphedema therapy clinic for the leg swelling. Elevation at night hasn't done a thing. I met with them on Monday for analysis and go back tomorrow to get the leg wrapped. The nurse said the swelling was likely not a side effect, but rather the fact that cancer got into the lymph node in the groin on that side, so fluid couldn't come back up through it. I don't know why Dr V couldn't have told me that from the start. They will reroute the fluid to go up to the nodes by the armpit using some massage technique.
I was hoping for just a compression device like they have in the hospital that I could just use at night, but noooo; I will be stuck with this labor intensive wrapping that has to be taken off and rewrapped every time I take a shower. Plus I'm sure that bending my leg is going to be a problem and it will be hot. I have to wear yoga pants or something similar as any other pants like jeans will be too tight, and I already have the nephrostomy bag on that side. I may have to move the bag to the other leg, but I doubt the tube is long enough. I already have enough trouble with the tube being pulled by my clothes' waistbands.. I also had to make the straps for the nephrostomy bag longer as they were doing the same. Looking forward to tomorrow, but hoping the treatment isn't worse than the disease.
I had the nephrostomy tube changed today at the hospital. That is required every 3 months. For some reason the entry site of the tube is sore now. Hopefully a short term thing. That was quick - a one hour surgery and I think the actual intervention radiologist performing it is only in the room for 10 minutes. They don't knock you out, but still stick you in recovery for 2 hours after and make someone drive you home. I always feel fine after, but I'm sure they just have one policy. I got the tech who I know on a first name basis to give me some stabilization clips to take home. Those start to fall off after a few weeks, so I had to go to the urologist to have them change it and pay a copay. I could order them online too, but they are almost as expensive as the copay. Last time the nurse replaced it without clipping in the tube and the bandage covering it fell off that night, so what do I need such crack professional help for?
Well that's it for now. At least being home, I can watch the Tour de France every morning. I can do without any other sporting events the rest of the year, but really enjoy this. This year has been epic so far and it's only Stage 5 of 21.
July 12, 2018 7:00PM
I went to the Lymphedema Therapy clinic today. The therapist showed me how to massage the lymph system to move the lymph through new pathways to the nodes in the armpit. She then wrapped the leg. That was way more involved than imaginable. A layer of lotion was applied then a thin sock. Then 1/4" thick foam strips were used to wrap the leg. Then a series of ace bandages that have a lesser degree of stretch ability than normal bandages were wrapped on top of the foam. Actually not as uncomfortable as it sounds, but now limited to workout pants and no socks.
Almost every day/week, same routine. Head over to CCCN, strip down, struggle to get on the zapper flatbed, get radiated front and back, climb off, get dressed go home. Go problem with the right leg a few days after the first round of chemo. Edema started blowing it up all the way to my foot. They sent me to get an ultrasound to ensure there were no blood clots involved. There weren't. Just another unique side effect. At least it started before I started the radiation treatments, else we wouldn't know which treatment was causing it. My next visit on that side of the house was with Kris the PA. He was no help in telling me how to mitigate the swelling, so I consulted with Dr. Google.
I tried elevation, but probably not long enough as I was in a fairly uncomfortable position. I tried a compression sock, but that made it worse. ($40 for those stupid socks!) Then I found another site that said to only use those socks when the swelling went down. Back to elevation during the night. Tried using two pillows, but the top one kept sliding off. However; the night before I measured both calves, and the left was 18 inches in circumference and the right was 20. By morning, the right was down to 18. Very uncomfortable way to sleep. The next night I used moving straps to tie the two pillows together and that worked well. The pillows are extremely firm, so they keep their shape. Had first tried two others that went completely flat when I put my legs on them.
Yesterday, I took the pain meds - tizanidine, gabapentin and morphine at 10 am, figuring the tizanidine would knock me out for a while, but would be coherent by the time I had to leave for radiation. I was in a haze on the couch. I got a call at 1:30 that woke me up from a dead sleep. The phone clock didn't change from 12:00pm when I looked at it. So I started making brunch, a pot of oatmeal with blueberries. It was done and cooling and I looked at the phone and the time suddenly switched to 2:15pm. Rushed out of the house, as much as hobbling with a cane and gimpy leg would allow, leaving the oatmeal on the counter. Called CCCN on the way to let them know I was running late. Got some teasing from the nurses and techs, and one said today, that it will take a while to live down.
Starting to get the timing of the pain meds right so that lying on the table doesn't hurt my pelvis so much. Too soon and they wear off; too late and they don't kick in. Just have to keep busy when I do take them so I don't fall asleep. They do make the scanner feel like it is swaying like a hammock when I close my eyes.
I found a site in WebMD that talked about the Tecentriq I was taking during the clinical trial. My treatment stopped a couple weeks after that with the same result in my bone tumors. I was probably lucky that the first round of chemo killed the cancer in the bladder tumor, else that likely would have grown during the trial.
In a couple weeks, I amgoing down to Phoenix to Cancer Treatment Centers of America for second opinions. By then the radiation will be over and the chemo will be left with one more treatment. They should be able to determine how well all this worked, although the docs at CCCN said it would take a few weeks for it all to work.
July 11, 2018
Woohoo. Finished radiation on Monday. They make you ring a bell, hand you a certificate of completion and a survey form. Threw those out, but took a picture of the certification just for here.
Seems ridiculous given that it will be weeks if not months to know how effective the treatment was. So glad to be done with it. I never really got the pain meds to work so that the pelvic pain was tortuous while lying on the flatbed of the zapper machine. Plus once a week they take realignment X-rays, so you're on there for at least 3x as long. It always seemed like I'd get into a tolerable position when I first climbed on, then they'd start sliding me around the table to align the marks on my skin with the laser. That's when it got awful and you have to just bear down and hold that position. Seems if the radiation can get through bone, it should be able to get through a foam pad or pillow. I am sure there are plenty of patients who have it even worse if they have to lie there longer or have spine cancer or something like that.Side effects of chemo are starting to show themselves.
I finally got Dr V to give me a referral last week to a lymphedema therapy clinic for the leg swelling. Elevation at night hasn't done a thing. I met with them on Monday for analysis and go back tomorrow to get the leg wrapped. The nurse said the swelling was likely not a side effect, but rather the fact that cancer got into the lymph node in the groin on that side, so fluid couldn't come back up through it. I don't know why Dr V couldn't have told me that from the start. They will reroute the fluid to go up to the nodes by the armpit using some massage technique.
I was hoping for just a compression device like they have in the hospital that I could just use at night, but noooo; I will be stuck with this labor intensive wrapping that has to be taken off and rewrapped every time I take a shower. Plus I'm sure that bending my leg is going to be a problem and it will be hot. I have to wear yoga pants or something similar as any other pants like jeans will be too tight, and I already have the nephrostomy bag on that side. I may have to move the bag to the other leg, but I doubt the tube is long enough. I already have enough trouble with the tube being pulled by my clothes' waistbands.. I also had to make the straps for the nephrostomy bag longer as they were doing the same. Looking forward to tomorrow, but hoping the treatment isn't worse than the disease.
I had the nephrostomy tube changed today at the hospital. That is required every 3 months. For some reason the entry site of the tube is sore now. Hopefully a short term thing. That was quick - a one hour surgery and I think the actual intervention radiologist performing it is only in the room for 10 minutes. They don't knock you out, but still stick you in recovery for 2 hours after and make someone drive you home. I always feel fine after, but I'm sure they just have one policy. I got the tech who I know on a first name basis to give me some stabilization clips to take home. Those start to fall off after a few weeks, so I had to go to the urologist to have them change it and pay a copay. I could order them online too, but they are almost as expensive as the copay. Last time the nurse replaced it without clipping in the tube and the bandage covering it fell off that night, so what do I need such crack professional help for?
Well that's it for now. At least being home, I can watch the Tour de France every morning. I can do without any other sporting events the rest of the year, but really enjoy this. This year has been epic so far and it's only Stage 5 of 21.
July 12, 2018 7:00PM
I went to the Lymphedema Therapy clinic today. The therapist showed me how to massage the lymph system to move the lymph through new pathways to the nodes in the armpit. She then wrapped the leg. That was way more involved than imaginable. A layer of lotion was applied then a thin sock. Then 1/4" thick foam strips were used to wrap the leg. Then a series of ace bandages that have a lesser degree of stretch ability than normal bandages were wrapped on top of the foam. Actually not as uncomfortable as it sounds, but now limited to workout pants and no socks.
