Blood work looked good yesterday. The doctor said I looked great. Not to brag, but most people tell me that. :) It's a little crazy, you would never know to look at me.
I had lots of questions for the doctor, but figured we will know more in a couple weeks after the scans. I had the dates wrong, I will be scanned on the 10th and find out results on the 11th. This was a relief, as Josh's birthday is on the 12th (the day I had it in my schedule) and as superstitious as I try not to be...well, we just weren't excited about it being on a birthday this year.
The doctor did clarify that if we were at a point at needing more IPI, we could do the testing again and see if that would be a possibility. I was very relieved, as I'm pretty freaked out I would loose my mind if I felt another tumor. Knowing there was a medicine out there that would help it, and I couldn't have it.
So far, though, I do not feel more tumors. Just one stubborn tiny one on my rib that has not changed.
I took one of each of my anti-emetics last night with the Temodar, with great
results-no nausea! Slept through the night. Just a little sleepy now.
The plan: I get to reduce the Temodar to every 4 weeks instead of every 3. We will scan every 8 weeks after this next scan. We still have radiation as an option if the brain mets persist. We may be able to qualify for an Anti-pd1 trial if we can stabilize the brain. We still have the braf drugs in our back pocket.
Take-home message from the appointment was that we still have time and options left. So grateful for both!
Thursday, August 30, 2012
Tuesday, August 28, 2012
beggars can't be choosers
One week of school behind us, and it was not what I had planned.
There might have been a few fights over homework with one child. Yelling-at-him, threatening-him kind of fights. I have had to put myself in timeout with the child.
Another child is in this pre-teen stage that is so foreign to him, and to me. A little "Why should I?" on the side with anything I ask. "Why?" Constantly. Like a two year old, minus the cuteness. Not acceptable.
I also had my first argument with Josh (the kind that produces tears) in I don't even know how long. Maybe 2 years?
I have been dreaming of moving. Bugged again by the size of my yard, the cramped closets, the same old view. Things I swore off ever complaining about again.
Even though I've gotten a bunch of random things done this week, I look around and feel like I have nothing to show for all my extra time.
In short, I am getting frustrated. Which feels very...normal. Like I used to feel.
When I realized this it made me smile.
And frown because...aren't those lessons permanent? Don't I get to keep that perspective? Are my days still going to be hard if I live? I never really considered this. It has been so easy to say that I truly just want life itself. But I don't know, the longer I'm around, the more I'm demanding. For whatever reason, I am needing more these days than to just feel good.
And I do feel so good. I even went running this week for the first time since they radiated the cancer in my bones (January). I didn't get very far, but I felt no pain. I think I now know what it feels like to win a race. Victory in every step. Couldn't stop smiling.
Tomorrow I see the Dr. and start the chemo pill (Temodar) again. Hovering over the toilet is a great way to get a little perspective back. :)
There might have been a few fights over homework with one child. Yelling-at-him, threatening-him kind of fights. I have had to put myself in timeout with the child.
Another child is in this pre-teen stage that is so foreign to him, and to me. A little "Why should I?" on the side with anything I ask. "Why?" Constantly. Like a two year old, minus the cuteness. Not acceptable.
I also had my first argument with Josh (the kind that produces tears) in I don't even know how long. Maybe 2 years?
I have been dreaming of moving. Bugged again by the size of my yard, the cramped closets, the same old view. Things I swore off ever complaining about again.
Even though I've gotten a bunch of random things done this week, I look around and feel like I have nothing to show for all my extra time.
In short, I am getting frustrated. Which feels very...normal. Like I used to feel.
When I realized this it made me smile.
And frown because...aren't those lessons permanent? Don't I get to keep that perspective? Are my days still going to be hard if I live? I never really considered this. It has been so easy to say that I truly just want life itself. But I don't know, the longer I'm around, the more I'm demanding. For whatever reason, I am needing more these days than to just feel good.
And I do feel so good. I even went running this week for the first time since they radiated the cancer in my bones (January). I didn't get very far, but I felt no pain. I think I now know what it feels like to win a race. Victory in every step. Couldn't stop smiling.
Tomorrow I see the Dr. and start the chemo pill (Temodar) again. Hovering over the toilet is a great way to get a little perspective back. :)
Tuesday, August 21, 2012
leftovers
Today I put on my bravest face as the boys walked into school. I will miss them every day.
Luckily, we are on an early track and they are dismissed at 2:15. Just enough time for me to exercise, shower, clean up the house, make dinner, work on the computer projects I have planned. Maybe even read and write with time left over. Sounds kind of lovely, doesn't it?
Last year Luke started 1st grade and everyone was curious what I was going to do with myself all day. I was for sure the most curious. But it turned out I did mostly the same stuff, but with no little dudes around. Super lonely!
Luckily, we are on an early track and they are dismissed at 2:15. Just enough time for me to exercise, shower, clean up the house, make dinner, work on the computer projects I have planned. Maybe even read and write with time left over. Sounds kind of lovely, doesn't it?
Last year Luke started 1st grade and everyone was curious what I was going to do with myself all day. I was for sure the most curious. But it turned out I did mostly the same stuff, but with no little dudes around. Super lonely!
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| Days like this, I have to wonder if what I told them is what I've taught them. I hope they are kind to the world even when I'm not there to prompt them. |
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| We woke up to presents on the door and a back-to-school banner on our window. There is only one woman who can get her kids out the door, herself ready for work, and pull off a good deed before 8am on the first day of school. Had to be Steph Fugal. As James put it, "Who else would it be?" We are so spoiled! |
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| Kids, if you miss the bus, grab your helmet, cause mom can't drive you to school anymore. Actually we are planning on biking as much as the weather permits. |
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| And the weather in the morning right now is so FABULOUS! The sun coming up over the mountains...yum. |
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| Ginger normally follows me around all day. Not today. She stared out the window with her saddest face all morning. |
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| You and me both, baby girl. |
Tuesday, August 14, 2012
no ipi for me
Things rarely go as planned it seems in this business. Luckily, I have been stretched so much
this year, I am pretty flexible. If I wasn't I might break on a day like today.
Yesterday 2 pm: They took me off of the schedule for the IPI infusion. The tests we were waiting for came back yesterday. Neither with good results. The biopsies taken in the colonoscopy showed inflammation and necrosis (is that what she said?) in the bowel. The calprotectin (which measures inflammation in the bowel) is 7 times the normal limits. I was very depressed.
I try hard to plead my case for more IPI. I am asymptomatic (no diarrhea), have been off steroids now for over a week, and most importantly...THE DRUG IS WORKING.
Yesterday 5 pm: They put me back on the schedule for 12 today for the infusion, while they looked into the case more closely. I hope all night.
Today 11 am: I got the phone call that I will not be getting the infusion. Too risky. Bowel is being eaten up by my immune system. If I understand it right, the normal flora it contains is being attacked by my immune system, which now has no limits. The risk is eating it away so much I develop tears or holes in the colon. We give IPI again to an angry immune system and in some cases, can't control it after that.
Still. After the IPI, I am down to really one drug (the braf drugs). And it's usually only effective for x amount of months.
Josh and I have had a hard time with this back-and-forth. I prayed all morning that the right decision would be made. I have to believe this is the right decision.
I have to now put this into perspective. I have to trust that what happens after all I can do is in Bigger Hands. I have to remember that although one dose may be all I get, it may be all I need. I have to remember that I needed something to work fast with my brain involvement, and that is just what I got. I have to believe that if my immune system is still attacking my colon, it is fighting the cancer too. I understand that another dose or two would not necessarily cure me anyway, or help more than just one dose. And another dose could do irreparable harm, could kill me faster than the cancer.
I cram these thoughts into my mind to keep other bad and depressing thoughts out.
I have another dose of Temodar in a couple weeks, and then we look forward to the big scans come Sept. 12th. Hoping, always hoping, for the best!
Yesterday 2 pm: They took me off of the schedule for the IPI infusion. The tests we were waiting for came back yesterday. Neither with good results. The biopsies taken in the colonoscopy showed inflammation and necrosis (is that what she said?) in the bowel. The calprotectin (which measures inflammation in the bowel) is 7 times the normal limits. I was very depressed.
I try hard to plead my case for more IPI. I am asymptomatic (no diarrhea), have been off steroids now for over a week, and most importantly...THE DRUG IS WORKING.
Yesterday 5 pm: They put me back on the schedule for 12 today for the infusion, while they looked into the case more closely. I hope all night.
Today 11 am: I got the phone call that I will not be getting the infusion. Too risky. Bowel is being eaten up by my immune system. If I understand it right, the normal flora it contains is being attacked by my immune system, which now has no limits. The risk is eating it away so much I develop tears or holes in the colon. We give IPI again to an angry immune system and in some cases, can't control it after that.
Still. After the IPI, I am down to really one drug (the braf drugs). And it's usually only effective for x amount of months.
Josh and I have had a hard time with this back-and-forth. I prayed all morning that the right decision would be made. I have to believe this is the right decision.
I have to now put this into perspective. I have to trust that what happens after all I can do is in Bigger Hands. I have to remember that although one dose may be all I get, it may be all I need. I have to remember that I needed something to work fast with my brain involvement, and that is just what I got. I have to believe that if my immune system is still attacking my colon, it is fighting the cancer too. I understand that another dose or two would not necessarily cure me anyway, or help more than just one dose. And another dose could do irreparable harm, could kill me faster than the cancer.
I cram these thoughts into my mind to keep other bad and depressing thoughts out.
I have another dose of Temodar in a couple weeks, and then we look forward to the big scans come Sept. 12th. Hoping, always hoping, for the best!
Friday, August 10, 2012
surprises
Tuesday night equaled anything I have faced. I was glad my house is so small, my toilet so close to my bed. Violent vomit. All. Night. Long. "Temodar!" I yelled in between the stomach wrenching, "You better be working!!" I have changed my antiemetics around since, and it is helping.
Wednesday evening I had to start my bowel prep for the colonoscopy. 14 days worth of laxatives down in 10 hours. Up all night at the toilet again. And while I am in a tell-all mood, I also might have pooped the bed. Not much, but what?! I think I was so stinking tired from not sleeping the night before, I just couldn't wake up. Holy crap, my kids have never even pooped the bed! I woke up Josh (the world's soundest sleeper) laughing my head off, making him get up to roll off the sheets. Had to finish my drink concoction starting at 3 am, to be at the hospital at 7.
The GREAT news is, the colon looks just fine. He took some biopsies they will test, but couldn't see any damage. I haven't talked to my oncologist, just waiting for a couple more tests to come back, but I would say we have a great chance of continuing on with the IPI. I'm feeling really happy that!
Strange mix of miracles and disasters over here.
This afternoon has been quiet. The kids are playing with their cousins. Josh at work. I wondered what am I going to do with an afternoon all by myself? I checked the calendar. Which led to a minor panic attack: 11 more days till the kids go back to school!
It is going to be a hard transition. They have been so much fun, and no work at all at home. I have considered pulling them out for a while and home-schooling. But it doesn't feel right. My original plans were to try and keep them on as normal a schedule as possible, and I need to stick to it. Besides, they love school. Nothing better than having them rush in, slam the door, drop their backpacks where they don't belong, and tell me something exciting that happened that day. Nothing better than being there. I feel so lucky I get to get them ready and send them off to school. Really didn't know if I was going to be able to do that this year.
So very grateful.
Wednesday evening I had to start my bowel prep for the colonoscopy. 14 days worth of laxatives down in 10 hours. Up all night at the toilet again. And while I am in a tell-all mood, I also might have pooped the bed. Not much, but what?! I think I was so stinking tired from not sleeping the night before, I just couldn't wake up. Holy crap, my kids have never even pooped the bed! I woke up Josh (the world's soundest sleeper) laughing my head off, making him get up to roll off the sheets. Had to finish my drink concoction starting at 3 am, to be at the hospital at 7.
The GREAT news is, the colon looks just fine. He took some biopsies they will test, but couldn't see any damage. I haven't talked to my oncologist, just waiting for a couple more tests to come back, but I would say we have a great chance of continuing on with the IPI. I'm feeling really happy that!
Strange mix of miracles and disasters over here.
This afternoon has been quiet. The kids are playing with their cousins. Josh at work. I wondered what am I going to do with an afternoon all by myself? I checked the calendar. Which led to a minor panic attack: 11 more days till the kids go back to school!
It is going to be a hard transition. They have been so much fun, and no work at all at home. I have considered pulling them out for a while and home-schooling. But it doesn't feel right. My original plans were to try and keep them on as normal a schedule as possible, and I need to stick to it. Besides, they love school. Nothing better than having them rush in, slam the door, drop their backpacks where they don't belong, and tell me something exciting that happened that day. Nothing better than being there. I feel so lucky I get to get them ready and send them off to school. Really didn't know if I was going to be able to do that this year.
So very grateful.
Tuesday, August 7, 2012
delay
Talked with the Doctor today before my IPI infusion. He doesn't know the best course of action to take here. Should we give another dose and risk some life-altering/life-threatening complications?
We decided to do a few tests this week and see what kind of damage we have done, then decide if we should give the next dose or not. I am at the eye center right now (I have had a little blurry vision, but the eye Doc is saying things look okay). I will have a colonoscopy Thursday and if it looks good, we will do the IPI on Tuesday. If there is significant damage to the colon and we don't do IPI on Tuesday, we will not be able to do the IPI again. We would just hope for the best, scan in September as planned, and go from there.
I really want another dose, but I understand. When the oncologist is hesitant (these guys will take you the brink of death to get rid of the nasty cancer), I listen.
Sigh.
I asked if the IPI could work with just one dose, and he said it is a possibility, but in the studies that were done half of the patients got all four doses.
Josh is feeling really good about this plan. He has been worried about the next dose. I have just been prepping for a very ill couple of weeks, so I'm a little thrown off. I will start another round of Temodar tonight, which will make me sick for the week. But nothing like I was prepared for.
I will keep you posted. Hopefully our decision will be an easy one when all the test results come back.
We decided to do a few tests this week and see what kind of damage we have done, then decide if we should give the next dose or not. I am at the eye center right now (I have had a little blurry vision, but the eye Doc is saying things look okay). I will have a colonoscopy Thursday and if it looks good, we will do the IPI on Tuesday. If there is significant damage to the colon and we don't do IPI on Tuesday, we will not be able to do the IPI again. We would just hope for the best, scan in September as planned, and go from there.
I really want another dose, but I understand. When the oncologist is hesitant (these guys will take you the brink of death to get rid of the nasty cancer), I listen.
Sigh.
I asked if the IPI could work with just one dose, and he said it is a possibility, but in the studies that were done half of the patients got all four doses.
Josh is feeling really good about this plan. He has been worried about the next dose. I have just been prepping for a very ill couple of weeks, so I'm a little thrown off. I will start another round of Temodar tonight, which will make me sick for the week. But nothing like I was prepared for.
I will keep you posted. Hopefully our decision will be an easy one when all the test results come back.