Reversible "fur" hat from Lori
Naughty hat
Black jersey hat with offending flower removed
Knit hat
A few jersey hats for spring
Note the post-steroid face flush!
Saturday, February 28, 2009
Chemo # 5 nearly done
It 's been another frustrating overnight stay at the hospital, though it went a little better than the last time.
It started with the pre-chemo doctor visit where I got some encouraging news for a change. My tumor marker [CA125] was down to 8 from the 48 where it was at 3 months ago. 8 is the range it was in for the entire time after I finished treatment five years ago until last April when it had crept up to 17. And that number [the 8] was taken just before my last treatment so it was only after 2 full and 1 more aborted chemo treatments and prior to beginning radiation on the head tumor. That really boosted my mood. We'll keep going for the 6th round and then do another CT scan to see where things are at. I think he's planning to leave the head treament to the radiation docs and an MRI is scheduled for April 3rd for that. The MRI will give a lot more detail to help plan the cyberknife treatment, including when to do it.
I told the doctor about how frustrating the chemo treatment at the hospital was last time. He was sympathic about the delays, but I had the impression he hears that from everyone. I asked if they could access my port while I was there to save a couple hours anyway and he said they could do that. He also said he would make sure I got Zofran again, every 8 hours while I'm in the hospital. I also asked about the fact that they did not do a saline drip for hydration while giving the chemo, which was fine, just that they hadn't told me so I didn't start out drinking enough. It was such a nice day yesterday, I even asked if he could arrange for a room with a view of Mt. Rainier.
So I got checked into the hospital with my port already accessed, eager to get things started. When I go up to th 11th floor, the nurse said that Drescher had asked them to put me in a room on the south side of the building with a Mt. Rainier view. Excellent! He had also asked them to run simultaneous IV fluids. But I still had to sit around and wait ... and wait ... and wait to start chemo. The nurse came by after a couple hours and said they would be starting a second IV line for a saline drip for hydration. I didn't think that meant an IV in my hand, but that's what they meant. So when the IV lady arrived and I realized their intent I told her that at the Cancer Institute they ran the hydration line through the same infusion machine into my port. She said she wasn't sure the two should be mixed, but she'd find out. After a while the RN can back to ask if the IV had been put in so I again explained to her how it was done at the Cancer Institute. She said she would check, and sure enough, came back a 1/2 hour later saying they could do that. Then it was waiting for drugs. We finally got started at 1:00 this time! So an hour later than last time, probably due to my bitching about them wanting to put in an unnessesary 2nd IV line.
At least this time they had the drugs lined up and ready to go so that once we got started there were no real delays. So we did make up one hour and the last 12 hour drip went in at 11:30. So I should be out of here by noonish again. Maybe next time they can recall all the things we did this time and get through it even more quickly. That would be nice.
I'm definitely feeling the wear and tear of 3 months of treatment though. I am a little more on the nauseous side and much more tired than I usually am on Day 2 of a cycle. I hope that doesn't mean I'll have a particularly bad round this time. But I'm pretty sure I'll be dragging through March with a low energy level.
It started with the pre-chemo doctor visit where I got some encouraging news for a change. My tumor marker [CA125] was down to 8 from the 48 where it was at 3 months ago. 8 is the range it was in for the entire time after I finished treatment five years ago until last April when it had crept up to 17. And that number [the 8] was taken just before my last treatment so it was only after 2 full and 1 more aborted chemo treatments and prior to beginning radiation on the head tumor. That really boosted my mood. We'll keep going for the 6th round and then do another CT scan to see where things are at. I think he's planning to leave the head treament to the radiation docs and an MRI is scheduled for April 3rd for that. The MRI will give a lot more detail to help plan the cyberknife treatment, including when to do it.
I told the doctor about how frustrating the chemo treatment at the hospital was last time. He was sympathic about the delays, but I had the impression he hears that from everyone. I asked if they could access my port while I was there to save a couple hours anyway and he said they could do that. He also said he would make sure I got Zofran again, every 8 hours while I'm in the hospital. I also asked about the fact that they did not do a saline drip for hydration while giving the chemo, which was fine, just that they hadn't told me so I didn't start out drinking enough. It was such a nice day yesterday, I even asked if he could arrange for a room with a view of Mt. Rainier.
So I got checked into the hospital with my port already accessed, eager to get things started. When I go up to th 11th floor, the nurse said that Drescher had asked them to put me in a room on the south side of the building with a Mt. Rainier view. Excellent! He had also asked them to run simultaneous IV fluids. But I still had to sit around and wait ... and wait ... and wait to start chemo. The nurse came by after a couple hours and said they would be starting a second IV line for a saline drip for hydration. I didn't think that meant an IV in my hand, but that's what they meant. So when the IV lady arrived and I realized their intent I told her that at the Cancer Institute they ran the hydration line through the same infusion machine into my port. She said she wasn't sure the two should be mixed, but she'd find out. After a while the RN can back to ask if the IV had been put in so I again explained to her how it was done at the Cancer Institute. She said she would check, and sure enough, came back a 1/2 hour later saying they could do that. Then it was waiting for drugs. We finally got started at 1:00 this time! So an hour later than last time, probably due to my bitching about them wanting to put in an unnessesary 2nd IV line.
At least this time they had the drugs lined up and ready to go so that once we got started there were no real delays. So we did make up one hour and the last 12 hour drip went in at 11:30. So I should be out of here by noonish again. Maybe next time they can recall all the things we did this time and get through it even more quickly. That would be nice.
I'm definitely feeling the wear and tear of 3 months of treatment though. I am a little more on the nauseous side and much more tired than I usually am on Day 2 of a cycle. I hope that doesn't mean I'll have a particularly bad round this time. But I'm pretty sure I'll be dragging through March with a low energy level.
Tuesday, February 24, 2009
A positive and informative appointment
I saw the cyberknife doctor for an initial consult appointment this morning. I liked her and the facility alot. I thought they were nice at my usual radiation place but these guys were a step above that even. I got a tour of the machine room and found out I will get a new mask for this treatment... more comfortable so I can take the hour on the table. The table will also be padded so my back shouldn't get so achy.
But I really like the doctor. She took the time to go through all my CT scans and showed me thoroughly what the status of my disease is and the progress that has been made so far. She was very positive that the radiation was working. We will wait until April then do an MRI to get more detailed info on the current status of the tumor. They may even wait until May to do the procedure if I've had a good result from the current radiation. She showed me multiple images from the CTs that made things much clearer to me. She agreed the spleen should come out eventually. But the positive thing for me is that there is no evidence of other tumors. And the tumor in my spleen is not spreading towards my pancreous (sp?) or other more vital organs. Instead it's headed towards my ribs. Or maybe it's that it started on the abdominal wall. Anyway... I have more hope that this can be arrested for a while anyway so I feel more positive about treatment -- even the chemo -- since the tumors had shown regression even after just 2 real treatments.
But I really like the doctor. She took the time to go through all my CT scans and showed me thoroughly what the status of my disease is and the progress that has been made so far. She was very positive that the radiation was working. We will wait until April then do an MRI to get more detailed info on the current status of the tumor. They may even wait until May to do the procedure if I've had a good result from the current radiation. She showed me multiple images from the CTs that made things much clearer to me. She agreed the spleen should come out eventually. But the positive thing for me is that there is no evidence of other tumors. And the tumor in my spleen is not spreading towards my pancreous (sp?) or other more vital organs. Instead it's headed towards my ribs. Or maybe it's that it started on the abdominal wall. Anyway... I have more hope that this can be arrested for a while anyway so I feel more positive about treatment -- even the chemo -- since the tumors had shown regression even after just 2 real treatments.
Saturday, February 21, 2009
Halfway through radiation Round 2
Actually Wednesday was my halfway date. I'm now down to 8 treatments. I'm feeling pretty good overall, but I'm definitely more tired than I had been. It's probably a combination of the cumulative effect of the chemo and the radiation. I get about 8-9 hours of sleep a night and still wake up feeling tired to the bone. Even at that, though, I still have plenty of energy to get through the day so I'm not complaining at all.
I have round 5 of chemo this coming Friday, again in the hospital overnight. I'm not looking forward to radiation the Monday after because I feel like crap and that's also the day I get additional films done and meet with the doctor so I'm there and on the table for a while. I'll be done that Wednesday so I'll probably be at my worst for the next few days.
I also have my first meeting with the Cyberknife Center doctor on Tuesday the 24th. That should be interesting. KOMO tv had a segment on the cyberknife treatment last Monday because one of their anchors went through the process for a benign brain tumor. Here's a link to the story.
http://www.komonews.com/news/39688052.html?video=YHI&t=a
Should give you a good idea of what I'll be going through if it works. I hope I don't have to do TEN sessions, but I guess I'll do whatever it takes. :)
I have round 5 of chemo this coming Friday, again in the hospital overnight. I'm not looking forward to radiation the Monday after because I feel like crap and that's also the day I get additional films done and meet with the doctor so I'm there and on the table for a while. I'll be done that Wednesday so I'll probably be at my worst for the next few days.
I also have my first meeting with the Cyberknife Center doctor on Tuesday the 24th. That should be interesting. KOMO tv had a segment on the cyberknife treatment last Monday because one of their anchors went through the process for a benign brain tumor. Here's a link to the story.
http://www.komonews.com/news/39688052.html?video=YHI&t=a
Should give you a good idea of what I'll be going through if it works. I hope I don't have to do TEN sessions, but I guess I'll do whatever it takes. :)
Saturday, February 7, 2009
Home From the Hospital
I got released about 12:15 this afternoon. Things settled down after my last note last night. My itchy palm lasted about 5 minutes before it went away and all my vitals stayed good every time they were checked. It was around midnight by the time the 12 hour dose was started and I asked for ativan to help me sleep because I was a little wound up after my scare that I was going to have a reaction. That did the trick and I slept soundly until 5:30 am when I was awakened with an offer of zofran and a vitals check. Everything was still good. I thought about trying to get more sleep but I ended up staying up. I ordered breakfast as soon as the kitchen opened at 7 and Darcy arrived with a yummy latte before breakfast did at 8am. After breakfast we sat around waiting for the darn drip to run out. We took a few laps around the ward dragging my infusion machine with us. Seems like it took forever for that last 100 ML to run through. Finally at 11:45 the machine started beeping it was empty. I got unplugged, got dressed and had to wait another 15 minutes for the discharge paperwork. Then I was FREE!
I am tired [probably a lack of sleep thing] and miss having my Saturday to do my own thing on the last day I feel decent. Hopefully the next time will go a little more smoothly now that I know what to expect. If they can just get the meds lined up so we don't waste time waiting on them, that would help alot. I wonder if I could go to the Cancer Institute to get my port accessed after radiation, then I don't have to wait for the hospital to have their guy available. If we could get that 12 hour dose started by 9 or 10pm I could get a good night's sleep AND get out of there by 9 or 10 the next day. One can always hope anyway. :)
I am tired [probably a lack of sleep thing] and miss having my Saturday to do my own thing on the last day I feel decent. Hopefully the next time will go a little more smoothly now that I know what to expect. If they can just get the meds lined up so we don't waste time waiting on them, that would help alot. I wonder if I could go to the Cancer Institute to get my port accessed after radiation, then I don't have to wait for the hospital to have their guy available. If we could get that 12 hour dose started by 9 or 10pm I could get a good night's sleep AND get out of there by 9 or 10 the next day. One can always hope anyway. :)
Friday, February 6, 2009
Spending the day in the hospital
It's been a long and a bit of a frustrating day so far. We got here before nine am because we were told to just head over after radiation. Got checked in but had to wait until almost noon for the chemo to start. That was two hours for the guy to come access my port, then another hour for the premeds to get started. So it's now 5pm and I'm waiting for the carboplatin to be brought up fom the pharmacy. Darcy and Melisa were here most of the day, but both are gone now at the critical moment when they start up on the carbo.
I guess the plan is to start with 1/1000 of the dose over 1.5 hours. If that goes well, it's 1/100 of the does over the same time frame. If things are fine, 1/10th of the dose over another 1.5 hours. Finally, the remainder over 12 hours. So the original plan to be out of here in the morning is shot. If there is a lengthy delay between each dose they probably won't start that last 12 hour session until very late tonight. That gets me out of here late morning at the earliest. Hopefully this works. When I had my somewhat mild reaction, the total dose was going in at a 1/2 hour rate. So from 30 minutes to 18 hours for that portion of the infusion.
I'll probably update later to let you know how things are going. Unless there is a major issue.
11:00pm update
Things have been going fine. I'm just getting ready to settle down for some sleep, I hope, when the last dose gets started. And just as I started this post, my left palm has started itching. I hope that isn't a sign of things to come. They have given me nothing for reactions since noon. No more decadron, no more benedryl, nothing for nausea. I had to have Darcy fetch my zofran from the car to take my prescribed oral dose. It's let up a little, but I will tell the nurse about it when she comes in the change the bag.
Wish me luck...
I guess the plan is to start with 1/1000 of the dose over 1.5 hours. If that goes well, it's 1/100 of the does over the same time frame. If things are fine, 1/10th of the dose over another 1.5 hours. Finally, the remainder over 12 hours. So the original plan to be out of here in the morning is shot. If there is a lengthy delay between each dose they probably won't start that last 12 hour session until very late tonight. That gets me out of here late morning at the earliest. Hopefully this works. When I had my somewhat mild reaction, the total dose was going in at a 1/2 hour rate. So from 30 minutes to 18 hours for that portion of the infusion.
I'll probably update later to let you know how things are going. Unless there is a major issue.
11:00pm update
Things have been going fine. I'm just getting ready to settle down for some sleep, I hope, when the last dose gets started. And just as I started this post, my left palm has started itching. I hope that isn't a sign of things to come. They have given me nothing for reactions since noon. No more decadron, no more benedryl, nothing for nausea. I had to have Darcy fetch my zofran from the car to take my prescribed oral dose. It's let up a little, but I will tell the nurse about it when she comes in the change the bag.
Wish me luck...
Wednesday, February 4, 2009
Oncologist Visit
I got the CT results for my abodomen and it's a bit mixed. The tumors have shrunk, just not as much as he was hoping. Although I had only had 2 rounds of the chemo and a partial 3rd round so it hadn't had much time to work. There were no new tumors other than the one in my head, and that one isn't actually "new", it just wasn't looked for until I complained about it. So he was worried that that one had grown while I was doing treatment. I don't necessarily think it was growing. Who can really say since the first scan of it didn't happen until 1/26/09. The other possibility is that it's location is such that it's not getting a good shot of chemo. Radiation should help with that though.
Anyway, because he's not satisfied with the rate of shrinkage of the other tumors, he wants to add hormone therapy to the treatment. So I will start tomoxifan now and alternate that monthly with megace. From prior reading on the subject, I know that those are typically last line of defense paliative treatments. But I've never heard of giving it at the same time as you're getting chemo. He has never used the words "paliative" with me. That essentially means "making you comfortable for as long as we can" ie... no cures or likely even remissions. You would think he would say so if that were the case. And at the time I am in the office, I was so relieved to hear that the tumors were not "stable", but were at least shrinking and that there was nothing in my lungs or liver, I just wanted to hang onto that little bit of good news.
So chemo will continue and I will be admitted to the hospital on Friday and will spend the night there Friday night. He said I should be released on Saturday morning. Hope insurance covers a hospital stay for chemo.
I had my first zapping this morning as well. That went well. Darcy came in and got a picture of me bolted to the table so I'll post that this evening.
Anyway, because he's not satisfied with the rate of shrinkage of the other tumors, he wants to add hormone therapy to the treatment. So I will start tomoxifan now and alternate that monthly with megace. From prior reading on the subject, I know that those are typically last line of defense paliative treatments. But I've never heard of giving it at the same time as you're getting chemo. He has never used the words "paliative" with me. That essentially means "making you comfortable for as long as we can" ie... no cures or likely even remissions. You would think he would say so if that were the case. And at the time I am in the office, I was so relieved to hear that the tumors were not "stable", but were at least shrinking and that there was nothing in my lungs or liver, I just wanted to hang onto that little bit of good news.
So chemo will continue and I will be admitted to the hospital on Friday and will spend the night there Friday night. He said I should be released on Saturday morning. Hope insurance covers a hospital stay for chemo.
I had my first zapping this morning as well. That went well. Darcy came in and got a picture of me bolted to the table so I'll post that this evening.
Tuesday, February 3, 2009
Radiation Mask Photos
As promised, here's a couple pictures of the form fitting mask for radiation. You can see some of the field they will be radiating. I'll be getting 3 zaps per session this time. Two from different angles on the right side and one from the left side shooting up.
I had my "dry run" appointment today and had to be in the mask for about a 1/2 hour. It wasn't too bad though because the techs were in the room for most of it and I could actually peep out a bit this time. The sessions themselves will be much shorter. They are working on cutting out a section around my mouth [hence the scissors]
I meet with the oncologist tomorrow at 8:30 so we'll see what the chemo plan is at this point and get the update on what the CT scan showed for the spleen tumor. I'm not expecting great news on that front. Probably because I have not gotten good news at any point since November. I've become cynical about the whole thing.
I had my "dry run" appointment today and had to be in the mask for about a 1/2 hour. It wasn't too bad though because the techs were in the room for most of it and I could actually peep out a bit this time. The sessions themselves will be much shorter. They are working on cutting out a section around my mouth [hence the scissors]
I meet with the oncologist tomorrow at 8:30 so we'll see what the chemo plan is at this point and get the update on what the CT scan showed for the spleen tumor. I'm not expecting great news on that front. Probably because I have not gotten good news at any point since November. I've become cynical about the whole thing.
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