We had a great Thanksgiving holiday. I kept thinking over and over how grateful I am to have so many reasons to fight. And I got to spend the whole weekend with the most important ones.
I have been on the phone and email trying to get the ball rolling with the trial I am trying to get into. Yesterday my doctor (lovely man!) called to let me know he talked with the doctor who is running the Anti-PD1 trial and it looks like I will have a good chance at qualifying. I have an appointment on Dec. 17th in Oregon, and if all goes well, I will be traveling up there weekly for the first two months, then every-other week after that. I will do this as for long as I'm responding, with scans every 2 months to
check on my progress. When the drug is approved, I would be able to
get it here. But that could be a while. The infusion will only take 3 hours or so, so there will not be nights in the hospital, thank goodness! The side effects are usually minimal. Just pray for me that I can get on this trial. It is the only thing that sounds fun right now.
We have had a rough week emotionally with the reality of our situation. Luckily, it has gotten better every day. I feel great physically, I feel really good about this trial, and I still have an incredible amount of fight in me. December 17th can't come soon enough!
Friday, November 30, 2012
Wednesday, November 21, 2012
so...
Because there is disease progression we need to try something else.
The four options we are considering:
1) A trial they are doing to inject the tumor itself with IPI and IL-2. This is a phase 1 trial, so there is no data on effectiveness. But in theory, it could work.
2) BRAF inhibitors (Zelboraf). I really want to save this till the end (a good percentage of people respond, but the effects are usually short-lived). Doctor agrees. Try to get another immune response first.
3) Look for an Anti-PD-1 trial around the country. They took a quick look and there might be one in Oregon recruiting participants. Because we got the cancer out of my brain (still gone, by the way!) I may qualify. These trials are hard to get into, but they will call around an see what we can do. This drug is similar to IPI, without the bowel side effects. A very promising drug. I would want to try this now while I have a chance of qualifying.
4) Radiation and continue the Temodar. This is not a bad idea. In fact, it might be risky to take me off the Temodar (which we will have to do with any of the other options) if that is what is keeping it out of my brain. If I can't get into a trial, I think this is my next move. For now the Temodar is on hold until we find out about the trials.
I did cry some big tears this evening. Ginger kept licking them off, despite my protests. Dumb dog!
I got over it pretty quick and got into research mode. Josh put the kids to bed. Luke tucked me in (he does this when he can tell I'm too tired to tuck him in). We are looking forward to a long weekend, and then we should be able to get a more definite plan together.
Overall, I am not too sad about the results. What can you throw at me at this point that I can't beat down?
The four options we are considering:
1) A trial they are doing to inject the tumor itself with IPI and IL-2. This is a phase 1 trial, so there is no data on effectiveness. But in theory, it could work.
2) BRAF inhibitors (Zelboraf). I really want to save this till the end (a good percentage of people respond, but the effects are usually short-lived). Doctor agrees. Try to get another immune response first.
3) Look for an Anti-PD-1 trial around the country. They took a quick look and there might be one in Oregon recruiting participants. Because we got the cancer out of my brain (still gone, by the way!) I may qualify. These trials are hard to get into, but they will call around an see what we can do. This drug is similar to IPI, without the bowel side effects. A very promising drug. I would want to try this now while I have a chance of qualifying.
4) Radiation and continue the Temodar. This is not a bad idea. In fact, it might be risky to take me off the Temodar (which we will have to do with any of the other options) if that is what is keeping it out of my brain. If I can't get into a trial, I think this is my next move. For now the Temodar is on hold until we find out about the trials.
I did cry some big tears this evening. Ginger kept licking them off, despite my protests. Dumb dog!
I got over it pretty quick and got into research mode. Josh put the kids to bed. Luke tucked me in (he does this when he can tell I'm too tired to tuck him in). We are looking forward to a long weekend, and then we should be able to get a more definite plan together.
Overall, I am not too sad about the results. What can you throw at me at this point that I can't beat down?
Results
Kind of what I suspected. The tumor near the rught lung is gone. The other three tumors have grown a bit. After discussing options we are going to look into getting into an anti pd1 trial somewhere in the country. So it looks like the fight continues. More later....
Wednesday, November 14, 2012
countdown
In one week we scan again. I am entirely creeped out.
My faith a little shaken in the events with my sister. Lighting can strike in the same place twice.
Predictions? I think the tumor by my diaphram is gone. Shortly after last scans I had an awful pain, like a knife cutting through my lung, every time I tried to take a deep breathe. I would breathe in, then scream as I got to a certain point. It freaked us out, but only lasted like 4 days. I am hoping it was getting big as my immune system prepared for attack.
I think I feel the one in my right arm pit. You have to dig, but it does seem to still be there.
But who even knows? This is all just crazy.
I am assuming if there is nothing new, but we can still see the cancer, we will continue to treat. Either with just the Temodar, or radiate the remaining tumors. If we have new growth, IPI again? A trial? I don't really know. I am only now considering these possibilities. I have felt so dang good, had so much hope. We slipped back into 'normal' life so quickly and easily. The kids have been so fun, Josh so happy. We have been only talking and acting like I am going to be around for a long time.
But now as we get closer to knowing, I'm not so sure.
And so, I am letting myself be nervous this week. I took the kids to school this morning then climbed back into bed. Hiding from all the frightening things that are happening out there. Using this one morning with nothing on my calendar to take some deep breaths. To search for some more strength.
Probably won't find any under the covers though, huh?
My faith a little shaken in the events with my sister. Lighting can strike in the same place twice.
Predictions? I think the tumor by my diaphram is gone. Shortly after last scans I had an awful pain, like a knife cutting through my lung, every time I tried to take a deep breathe. I would breathe in, then scream as I got to a certain point. It freaked us out, but only lasted like 4 days. I am hoping it was getting big as my immune system prepared for attack.
I think I feel the one in my right arm pit. You have to dig, but it does seem to still be there.
But who even knows? This is all just crazy.
I am assuming if there is nothing new, but we can still see the cancer, we will continue to treat. Either with just the Temodar, or radiate the remaining tumors. If we have new growth, IPI again? A trial? I don't really know. I am only now considering these possibilities. I have felt so dang good, had so much hope. We slipped back into 'normal' life so quickly and easily. The kids have been so fun, Josh so happy. We have been only talking and acting like I am going to be around for a long time.
But now as we get closer to knowing, I'm not so sure.
And so, I am letting myself be nervous this week. I took the kids to school this morning then climbed back into bed. Hiding from all the frightening things that are happening out there. Using this one morning with nothing on my calendar to take some deep breaths. To search for some more strength.
Probably won't find any under the covers though, huh?
Friday, November 9, 2012
life is good
That was to be my next blog post. I was going to write it on an small island of Puerto Rico. After a day on a white sandy beach. Tired from playing in the waves. Nothing but time. The Caribbean Sea in front of me. I was going to sit in front of a computer and type out the latest.
I dedicated last week to getting my house ready to go. Writing up and planning the kids schedule for the babysitters. Shopping for food and packing. Reading review after review about what we should do when we were down there. After a week of prep and anxiety (this is the first trip I've had major doubts about), Friday night I was ready to go. It finally sounded fun. Our plane was to leave at noon Saturday.
Saturday at 6:15am the phone woke us up. Too early. Maybe my sister had her baby! My sister who has had to put her oldest boy through chemotherapy is getting another boy! My sister who loves her babies in a way I never understood. The sister I talk to almost every day. She was scheduled to have a c-section near the end of my trip (yesterday). I was planning on being home by the time she left the hospital.
Josh hopped out of bed to get the phone, then handed it to me. It was indeed Sonja. But she was crying. "They told me I'm going to have a stillborn. There is no heartbeat."
And so, later that day she delivered her beloved little boy. We got to see her before the surgery, and not long after. We got to hold her little baby's body. He was beautiful. Daniel Robert Blodgett.
Life is good? Absolutely. I think this is the biggest reason I am so incredibly sad.
At church on Sunday I wanted only to cry. After the first hour I walked home though our park. Yellow leaves dotting the pathway like petals thrown before a bride. I looked up in the sunshine to a brilliant blue sky as a warm breeze rushed through my skirt. The skirt that moves so beautifully around the ankles. The trees were shedding, and in front of me the skinny leaves were spinning rapidly from high up down to the ground. I jumped to grab them with my hands in a game similar to catching snowflakes on your tongue. If anyone would have been watching, they would have been quite amused. But I was alone. In the middle of all of fall's beauties. And although I admit to being easily overcome during this kind of an encounter, I was especially stricken at that moment. Could there be a better heaven? Baby Daniel will not be here with us to enjoy this kind of day.
His graveside service was today. It snowed and hushed the world around us as we said goodbye. "The heavens are crying" I told her kids as I drove them to the mortuary to see their brother for the last time. "Crystallized tears" Steven (an incredible mind) added, looking out the window.
Yes, I wish I was on a beach today. But not because I care at all about the beach, but because if I was there it would mean Daniel would be here, and this horrible week would not have happened.
Life is good. And so terribly heartbreaking.
I dedicated last week to getting my house ready to go. Writing up and planning the kids schedule for the babysitters. Shopping for food and packing. Reading review after review about what we should do when we were down there. After a week of prep and anxiety (this is the first trip I've had major doubts about), Friday night I was ready to go. It finally sounded fun. Our plane was to leave at noon Saturday.
Saturday at 6:15am the phone woke us up. Too early. Maybe my sister had her baby! My sister who has had to put her oldest boy through chemotherapy is getting another boy! My sister who loves her babies in a way I never understood. The sister I talk to almost every day. She was scheduled to have a c-section near the end of my trip (yesterday). I was planning on being home by the time she left the hospital.
Josh hopped out of bed to get the phone, then handed it to me. It was indeed Sonja. But she was crying. "They told me I'm going to have a stillborn. There is no heartbeat."
And so, later that day she delivered her beloved little boy. We got to see her before the surgery, and not long after. We got to hold her little baby's body. He was beautiful. Daniel Robert Blodgett.
Life is good? Absolutely. I think this is the biggest reason I am so incredibly sad.
At church on Sunday I wanted only to cry. After the first hour I walked home though our park. Yellow leaves dotting the pathway like petals thrown before a bride. I looked up in the sunshine to a brilliant blue sky as a warm breeze rushed through my skirt. The skirt that moves so beautifully around the ankles. The trees were shedding, and in front of me the skinny leaves were spinning rapidly from high up down to the ground. I jumped to grab them with my hands in a game similar to catching snowflakes on your tongue. If anyone would have been watching, they would have been quite amused. But I was alone. In the middle of all of fall's beauties. And although I admit to being easily overcome during this kind of an encounter, I was especially stricken at that moment. Could there be a better heaven? Baby Daniel will not be here with us to enjoy this kind of day.
His graveside service was today. It snowed and hushed the world around us as we said goodbye. "The heavens are crying" I told her kids as I drove them to the mortuary to see their brother for the last time. "Crystallized tears" Steven (an incredible mind) added, looking out the window.
Yes, I wish I was on a beach today. But not because I care at all about the beach, but because if I was there it would mean Daniel would be here, and this horrible week would not have happened.
Life is good. And so terribly heartbreaking.
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| Daniel's siblings |
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| my sweet sister |
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| crystallized tears |