I had blood drawn when I got Herceptin and I have been curious (and worried) about the results. Specifically, I've been worried that my liver function tests and my tumor markers were going to be elevated. I emailed my oncologist yesterday (I can't tell you how cool it is to have a doctor who does email!) and everything is NORMAL! In the email I also asked her to help me get scheduled for my new port, so that will be coming down the pike too. I don't need the new port desperately but it sure will be nice to have one that works!
Just to keep you all in the loop- I definitely have some shit growing in my right breast again. I'm just hoping that that's the only spot... I'm hopeful that it is, but I guess I wouldn't be surprised if something else lights up on my pre-trial scan. I haven't been scheduled for that scan yet, but it should be happening in the next couple weeks.
Tuesday, November 29, 2011
Sunday, November 27, 2011
Relaxing Week
So I had last week off from school and from doctors! I didn't do any of the school work I brought home, but I did have some exciting adventures.
Last Sunday Keith and I killed some time on a rainy day by looking at cars. You see, after driving everyday for two weeks to San Francisco, I decided I'd rather be driving an automatic (I never ever would have thought this would happen, but between the traffic and the hills...). After realizing that my golf was still worth quite a bit of $$ we decided we could do it and we bought a car (another golf). The car isn't here yet- the dealer found one in San Diego so it needs to be shipped up...but hopefully I'll pick it up in a couple days.
I thought I'd treat Red to daily trips to one of my favorite off leash dog parks in the area (Point Isabel) during the break. On Monday, I made the mistake of going at low tide and Red went mudding (and got a nice bath afterwards!). On Tuesday, I made sure it wasn't low tide, but just as we rounded the corner to head back to the car he stopped hunting for ground squirrels when he saw a duck out in the water. Off he goes swimming after this duck (completely ignoring me). He swam out so far a concerned crowd was gathering and I was wondering how I was going to explain to Keith that I just watched the dog drown in the bay. Thankfully the duck finally flew out of Red's sight and he turned back to shore (right around this time a curious sea lion poked his head up not too far from Red). Ugh, I am sure I sprouted some new gray hairs from that! Needless to say, Red and I aren't doing any more off leash adventures until we work on recall even with tempting distractions!
Keith and I had a nice Thanksgiving. We ate too much and were pretty lazy. At 9:30pm or so we went for a drive to check out the lines at some of the big box stores nearby. You wouldn't believe (well some of you probably would) the line at Best Buy!! There were people with tents!?! There were also lines at Toys R Us and Target. We didn't do any shopping, just some staring.
Oh, I almost forgot...When I went in for Herceptin on November 18th my port wouldn't give any blood. So after being poked and repoked and assuring the nurse that the saline was indeed going in (I can taste it as soon as they push it in) I headed down to radiology where they did a little investigating and found that the end of the catheter is right up against the wall of the vein. What this means is that they can send things in, but when they try to suck things out they just end up sucking on the wall of the vein. Actually, what this really means is that I need a new port. Not the biggest deal in the world but one more thing that will need to be done eventually. There is no big rush since I'm not on any IV chemo at the moment, but I'll probably try to get it organized before too long. The upside is that I will be getting a bigger port (not good aesthetically), but good in that it can be used for scans.
I hate to say it, but I'm sort of looking forward to getting back to work. A week off means I've had a lot of time for my thoughts to get away from me. I'm worried that after 3 months of no treatment my cancer is roaring back. I'm not a fan of this 4 week wait between radiation and the start of the trial. I know the reality of the matter is that a week or two won't make any real difference in the long term, but it really fucks with your head to know that there is cancer growing inside you and you're not doing anything about it. I should be getting scheduled for a barrage of scans and other tests prior the start of the trial. Just getting that ball rolling will make me feel better. It's strange how much of a difference doing something (even if it isn't a treatment) makes on your state of mind.
Last Sunday Keith and I killed some time on a rainy day by looking at cars. You see, after driving everyday for two weeks to San Francisco, I decided I'd rather be driving an automatic (I never ever would have thought this would happen, but between the traffic and the hills...). After realizing that my golf was still worth quite a bit of $$ we decided we could do it and we bought a car (another golf). The car isn't here yet- the dealer found one in San Diego so it needs to be shipped up...but hopefully I'll pick it up in a couple days.
I thought I'd treat Red to daily trips to one of my favorite off leash dog parks in the area (Point Isabel) during the break. On Monday, I made the mistake of going at low tide and Red went mudding (and got a nice bath afterwards!). On Tuesday, I made sure it wasn't low tide, but just as we rounded the corner to head back to the car he stopped hunting for ground squirrels when he saw a duck out in the water. Off he goes swimming after this duck (completely ignoring me). He swam out so far a concerned crowd was gathering and I was wondering how I was going to explain to Keith that I just watched the dog drown in the bay. Thankfully the duck finally flew out of Red's sight and he turned back to shore (right around this time a curious sea lion poked his head up not too far from Red). Ugh, I am sure I sprouted some new gray hairs from that! Needless to say, Red and I aren't doing any more off leash adventures until we work on recall even with tempting distractions!
Keith and I had a nice Thanksgiving. We ate too much and were pretty lazy. At 9:30pm or so we went for a drive to check out the lines at some of the big box stores nearby. You wouldn't believe (well some of you probably would) the line at Best Buy!! There were people with tents!?! There were also lines at Toys R Us and Target. We didn't do any shopping, just some staring.
Oh, I almost forgot...When I went in for Herceptin on November 18th my port wouldn't give any blood. So after being poked and repoked and assuring the nurse that the saline was indeed going in (I can taste it as soon as they push it in) I headed down to radiology where they did a little investigating and found that the end of the catheter is right up against the wall of the vein. What this means is that they can send things in, but when they try to suck things out they just end up sucking on the wall of the vein. Actually, what this really means is that I need a new port. Not the biggest deal in the world but one more thing that will need to be done eventually. There is no big rush since I'm not on any IV chemo at the moment, but I'll probably try to get it organized before too long. The upside is that I will be getting a bigger port (not good aesthetically), but good in that it can be used for scans.
I hate to say it, but I'm sort of looking forward to getting back to work. A week off means I've had a lot of time for my thoughts to get away from me. I'm worried that after 3 months of no treatment my cancer is roaring back. I'm not a fan of this 4 week wait between radiation and the start of the trial. I know the reality of the matter is that a week or two won't make any real difference in the long term, but it really fucks with your head to know that there is cancer growing inside you and you're not doing anything about it. I should be getting scheduled for a barrage of scans and other tests prior the start of the trial. Just getting that ball rolling will make me feel better. It's strange how much of a difference doing something (even if it isn't a treatment) makes on your state of mind.
Tuesday, November 15, 2011
The Devil You Know
We went in to see my oncologist today and as I should have expected she had a new plan. She had presented my case to the Phase 1 Trial Tumor Board and the consensus was that I could/should go back on the Tykerb trial I was on before the brain tumor made itself known. Their reasoning is...
1. I had a really good response the first time around.
2. Trying it again doesn't burn any bridges, I can stop if I don't respond (or if I just can't deal with it).
3. Tykerb is a drug that may well keep brain tumors from popping up (it doesn't work as well at shrinking pre-existing tumors - probably what I had when I started the trial).
4. It isn't chemo, so I won't get run down physically and I won't lose my hair (seems like a silly thing, but I was kinda dreading losing my hair for the third time in 2 years).
I'm not excited to start this up again, but it seems like the right thing to do. I mean, if the experts at UCSF are recommending it I figure it's worth a try. The only sticking point (and maybe it isn't a bad thing) is that I can't start the trial for a month. One of the requirements of the trial (and most trials) is that you wait a month after any brain radiation. This means I'll be starting up again right before X-mas. Here's hoping that my present is lots of dead cancer cells!
1. I had a really good response the first time around.
2. Trying it again doesn't burn any bridges, I can stop if I don't respond (or if I just can't deal with it).
3. Tykerb is a drug that may well keep brain tumors from popping up (it doesn't work as well at shrinking pre-existing tumors - probably what I had when I started the trial).
4. It isn't chemo, so I won't get run down physically and I won't lose my hair (seems like a silly thing, but I was kinda dreading losing my hair for the third time in 2 years).
I'm not excited to start this up again, but it seems like the right thing to do. I mean, if the experts at UCSF are recommending it I figure it's worth a try. The only sticking point (and maybe it isn't a bad thing) is that I can't start the trial for a month. One of the requirements of the trial (and most trials) is that you wait a month after any brain radiation. This means I'll be starting up again right before X-mas. Here's hoping that my present is lots of dead cancer cells!
Monday, November 14, 2011
Sunday, November 13, 2011
Not Quite Done...
I was all set to finish up on Friday, but no such luck. The office was closed on Friday in observance of Veterans Day. I was disappointed, but what are you going to do? It just means I have to go back tomorrow for one more zap. I can't wait to finish up this stage and move on to whatever is next. I've got a doctor's appointment on Tuesday morning and we'll talk about what comes next. I'm suspecting that I'll go back on Tykerb (at the normal dose so fewer side effects) for a bit and then maybe another trial. We'll see.
The brain radiation hasn't been too bad. I have a couple sore spots on my head and I get a low grade feeling of ick after radiation but other than that I'm hanging in pretty well. I'm falling asleep a bit early (even for me), but at least some of that is probably due to the time change (or at least that's my excuse). Thankfully I haven't yet experienced the significant fatigue that I was warned about. The doctor says it could still crop up, but it is a good sign that I haven't had any issues so far.
One day last week I rolled up to the emergency room parking lot (yes, I get to park for free in the ER lot - a perk of having daily raditation treatments!) and I felt like I was entering a movie set. They were having some kind of drill (I suspect it had to do with something radioactive because there were geiger counters around). I couldn't resist taking a couple of pictures before I descended into the dungeon that is the radiation oncology department. I just can't decide which is creepier- the people in the suits or the duck-tape dummy...
The brain radiation hasn't been too bad. I have a couple sore spots on my head and I get a low grade feeling of ick after radiation but other than that I'm hanging in pretty well. I'm falling asleep a bit early (even for me), but at least some of that is probably due to the time change (or at least that's my excuse). Thankfully I haven't yet experienced the significant fatigue that I was warned about. The doctor says it could still crop up, but it is a good sign that I haven't had any issues so far.
One day last week I rolled up to the emergency room parking lot (yes, I get to park for free in the ER lot - a perk of having daily raditation treatments!) and I felt like I was entering a movie set. They were having some kind of drill (I suspect it had to do with something radioactive because there were geiger counters around). I couldn't resist taking a couple of pictures before I descended into the dungeon that is the radiation oncology department. I just can't decide which is creepier- the people in the suits or the duck-tape dummy...
Tuesday, November 1, 2011
The Mask
So, my first two radiation treatments are done. I'm already losing my patience with how late they run, but more on that later.
Today it took extra long because there was "a glitch" in my program. I don't totally understand what happened, but the computer detected movement as it switched from my right side to my left side and it had to be reset before we could continue. As they fixed the problem I was unlatched from the table and snapped this picture of my mask...
So far I'm feeling ok, a little weird, but nothing terrible. Hopefully things continue to go along pretty well.
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