My heart has been quiet for a while. I wonder what to say when people ask how I am doing. How has my summer been? Am I liking the new house? How are you feeling?
Physically I feel great. The second dose of AntiPD-1 was supposed to bring on more side effects than the first, so I was a little bummed I didn't feel sick at all. No night sweats, no chills, no diahrreah. Other than a pretty strong pull to my bed for an afternoon nap-I felt no difference. Tumors seem to be stable, or maybe smaller, but not a definite difference from the first dose. The large axillary tumor is still alarmingly large. The third dose was completed on Wed. and I have only felt a little chill in my bones and a desire to sleep.
Mentally, I do not feel 'great' yet. I worry about things. Well, I don't allow myself to worry about things (like is this really going to work?) by shutting down parts of my brain or something. I am just numb somehow. This may be a way I cope with things, but it is not the way I want to live. I am trying to break away from this pattern, and hopefully will find success.
One year ago they found cancer in my brain. In 25 spots. One year ago I was devastated.
I am so grateful that I am still in this fight. It's a fight till the death, and usually does not take this long for someone to win. But I'm holding my ground. I am praying that science can stay one step ahead of my disease. If every year I just need some medication to give me another year...
I used to wonder why we prolong our lives. Why we even offer toxic medicines that are only supposed to give you a few extra months (this is not the case with my medicines so far, as they do have the potential for long term responses). But every day I get it. The kids are so funny, and the moon is so wonderful, and the raspberries so ripe. Anything for more of this. Even just a little more.
Today I had a plan to blog about all our recent events. I had Josh take the kids to the rope swing by the river (I cannot get anything done on the computer when they are around-I would much rather be hanging out with them). I started typing and soon the world went black. An hour later I was awakened by the slamming of doors and kicking off of shoes. I had only gotten two paragraphs typed. The last one talked about my desire for naps. :)
So hopefully I can stay awake long enough to fill you in here pretty soon. Thank you for your concern and continued prayers.
Sunday, June 23, 2013
Sunday, June 2, 2013
breaking news and pain
Last week the pain was getting a little out of control. This strange, new pain. Sometimes it just whines at you, and you can demand it stop, or get yourself busy enough to drown out the noise. You can ignore until you try and do something normal. For me that was bending over to tie my shoes. Also walking up stairs hurt. There was no exersizing because taking in a deep breath was out of the question. Take a pain pill and all that stuff could be gone. But then you feel like crap and sleeping anyways, so you didn't do anything. Those were the choices when the cancer whines.
But sometimes it screams. Like it wants to get out so bad. And there is no choice but to silence it. Because nothing else on earth matters but getting rid of that pain. You can't see or think past this kind of pain. It is all consuming. The kind that puts you into tears. The pain pills don't bother you then, because you were getting nothing acclomplished without them. For that kind of pain they give you breakthrough pain meds.
Besides the fact that the pain hurts, it terrified me. So far my only symptom of cancer has been soreness in my bones when I put weight on them (over a year ago guys-I now have no cancer in my bones). It has been the drugs that have made me sick, not really the cancer. But now here is the cancer taking over my body and mind.
I have been dealing with this pain for a while now. It got to the point where I always felt it. And I often had to take pain pills.
But Monday morning I woke up feeling okay. So okay in fact, that this house that we just bought, that I haven't even cared about, suddenly mattered. It suddenly mattered that I didn't have a couch to sit in upstairs. It suddenly mattered that I have been sharing the basement bathroom with my boys. I knew it would someday, mostly because I could tell it mattered to Josh. He has been working on this house every spare minute. Luckily his mom knew it was important to him, she has been here working since we moved. My family has been here often feeding us and cleaning up. I just couldn't see what all the fuss was about. It didn't matter to me. I have been focused on getting my dream drug and getting out of pain.
But suddenly this week I see the bigger picture. Last night Josh got the flooring done and we opened the front door to the most beautiful view of the lake and the mountains and the clouds and the valley. I for the first time was excited about the move. The move that happened a month ago.
I smiled and took in a deep breath. It didn't hurt. It doesn't hurt. I have not had any pain pills all week. Sometimes I feel a little nauseous. But feeling way better than I did 2 weeks ago. I have a hard time believing that this drug has worked so quickly, but really? Is there any room for doubt over here? This is exactly what happens to me.
Today I keep getting alerts from the annual ASCO (American Society of Clinical Oncologists) meeting which is going on this week. What is the big study coming out? A phase 1 study of IPI (Ipilimumab) plus AntiPD-1 (now it has a name-Nivolumab). When patients are given the maximum dose they are producing a 53% objective response rates (tumor regression of 80% or more). So incredible. Seriously. Those numbers are incredible. Their conclusion? "Concurrent therapy with nivolumab and ipilimumab had a manageable safety profile and provided clinical activity that appears to be distinct from that in published data on monotherapy, with rapid and deep tumor regression in a substantial proportion of patients."
Rapid and deep tumor regression. I am pretty sure that is what is going on over here in Lehi Utah, folks. Incredible.
But sometimes it screams. Like it wants to get out so bad. And there is no choice but to silence it. Because nothing else on earth matters but getting rid of that pain. You can't see or think past this kind of pain. It is all consuming. The kind that puts you into tears. The pain pills don't bother you then, because you were getting nothing acclomplished without them. For that kind of pain they give you breakthrough pain meds.
Besides the fact that the pain hurts, it terrified me. So far my only symptom of cancer has been soreness in my bones when I put weight on them (over a year ago guys-I now have no cancer in my bones). It has been the drugs that have made me sick, not really the cancer. But now here is the cancer taking over my body and mind.
I have been dealing with this pain for a while now. It got to the point where I always felt it. And I often had to take pain pills.
But Monday morning I woke up feeling okay. So okay in fact, that this house that we just bought, that I haven't even cared about, suddenly mattered. It suddenly mattered that I didn't have a couch to sit in upstairs. It suddenly mattered that I have been sharing the basement bathroom with my boys. I knew it would someday, mostly because I could tell it mattered to Josh. He has been working on this house every spare minute. Luckily his mom knew it was important to him, she has been here working since we moved. My family has been here often feeding us and cleaning up. I just couldn't see what all the fuss was about. It didn't matter to me. I have been focused on getting my dream drug and getting out of pain.
But suddenly this week I see the bigger picture. Last night Josh got the flooring done and we opened the front door to the most beautiful view of the lake and the mountains and the clouds and the valley. I for the first time was excited about the move. The move that happened a month ago.
I smiled and took in a deep breath. It didn't hurt. It doesn't hurt. I have not had any pain pills all week. Sometimes I feel a little nauseous. But feeling way better than I did 2 weeks ago. I have a hard time believing that this drug has worked so quickly, but really? Is there any room for doubt over here? This is exactly what happens to me.
Today I keep getting alerts from the annual ASCO (American Society of Clinical Oncologists) meeting which is going on this week. What is the big study coming out? A phase 1 study of IPI (Ipilimumab) plus AntiPD-1 (now it has a name-Nivolumab). When patients are given the maximum dose they are producing a 53% objective response rates (tumor regression of 80% or more). So incredible. Seriously. Those numbers are incredible. Their conclusion? "Concurrent therapy with nivolumab and ipilimumab had a manageable safety profile and provided clinical activity that appears to be distinct from that in published data on monotherapy, with rapid and deep tumor regression in a substantial proportion of patients."
Rapid and deep tumor regression. I am pretty sure that is what is going on over here in Lehi Utah, folks. Incredible.
Sunday, May 26, 2013
sick and grateful
I have been sick this week. It's been hard to determine if it's the cancer, the pain pills, or the PD-1 infusion. Not liking the pain pill side-effects. Sure not liking the pain. But strangly loving the things I know for sure are from PD-1. Like the flu-like symptoms, and especially the severe chills I get in the middle of the night. I wake Josh up to witness those. Because that my friends, is an immune response.
I am almost sure that my little tumor in the armpit, that I first felt a couple of months ago, is on it's way out. The large one? May be loosening up. With IPI it took 5 days to notice tumor shrinkage, I think this is even faster. No major side effects yet.
Wish I had more energy to write about all the things that are filling my mind. I have spent enough time in bed to get something accomplished in here... They say the fatigue usually lasts only a few days after the infusion, so let's hope for that. And for a complete and miraculous response. :)
Thanks for all the prayers and kind words. God has been so very good to us.
I am almost sure that my little tumor in the armpit, that I first felt a couple of months ago, is on it's way out. The large one? May be loosening up. With IPI it took 5 days to notice tumor shrinkage, I think this is even faster. No major side effects yet.
Wish I had more energy to write about all the things that are filling my mind. I have spent enough time in bed to get something accomplished in here... They say the fatigue usually lasts only a few days after the infusion, so let's hope for that. And for a complete and miraculous response. :)
Thanks for all the prayers and kind words. God has been so very good to us.
Wednesday, May 22, 2013
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Monday, May 20, 2013
on my way
Brain MRI looks good. Insurance company is being reasonable. Plane leaves in 30 minutes. This is finally happening!!
Sunday, May 19, 2013
may 19th
Not in a writing sort of mood. But I know you are wondering about this week. The insurance company finally responded Friday, and I will be starting the medicine this Wed. (assuming I pass my brain MRI tomorrow, I will fly out for testing on Tuesday). They (back to the insurance company) did not give me the answer I wanted, so I will continue to battle it out. But it is sucking all my strength to wait for phone calls, to be on hold, to leave messages, to try and explain the situation to dozens of people. To hope.
I do not mean to complain about the money. We don't need a bake sale (yet). We have budgeted $8,000, and although the insurance is asking me to pay more, we also have more. We just don't want to spend it on hospitals if we don't have to (we have other bills and dreams believe it or not). If we shouldn't have to (which is my opinion).
Today I have been on pain pills all day for the first time. It is only the second time I've needed them during the day.
Today is also our 13th anniversary. I cry when I think about it. All the loveliness and now all the ugly things we have had to deal with. Josh is the most amazing person in the world. I have a hard time not feeling like I've ruined his life, but he says 'no question' he would have married me even if he would have know. I really wonder if I would have married him, I don't know if I could choose to break someone's heart.
I guess it's a good thing we can't see into the future.
I do not mean to complain about the money. We don't need a bake sale (yet). We have budgeted $8,000, and although the insurance is asking me to pay more, we also have more. We just don't want to spend it on hospitals if we don't have to (we have other bills and dreams believe it or not). If we shouldn't have to (which is my opinion).
Today I have been on pain pills all day for the first time. It is only the second time I've needed them during the day.
Today is also our 13th anniversary. I cry when I think about it. All the loveliness and now all the ugly things we have had to deal with. Josh is the most amazing person in the world. I have a hard time not feeling like I've ruined his life, but he says 'no question' he would have married me even if he would have know. I really wonder if I would have married him, I don't know if I could choose to break someone's heart.
I guess it's a good thing we can't see into the future.
Sunday, May 12, 2013
mother's day
I have given three wonderful children life, but I can't shake the feeling that in some strange ways, they have given me mine.
I am alive, in part (or mostly), because of these three reasons to live. They are the part of me I won't give up on. There have been many days I thought I could not go on. But they come out of their rooms in the sunny mornings, their bodies still warm and a little limp, open up my blanket, and curl up right beside me. Big eyes staring at the ceiling wondering what the day will bring.
There was this day last year, some serious fight stirring in me. I will need that magic again this week in a battle I didn't think I would have to fight. It's me against the insurance company. It's a long story, but basically 'the board' denied coverage for the trial. My mind was very clear as she read off the reasons why they made that decision, and when she was finished I debated every point with perfect logic. I just wish I could have said it with power! My voice was shamefully quivering. I was on the brink of sobbing my face off.
She said "Yes, I see what you're saying. Let me call you back." She took it directly to the head MD and called back an hour later. They are gathering information and will get back to me. They will pay for some at least, she assured me.
They better, I don't know who would want to deal with this angry mother. One who has researched this cancer, her options, and this drug in her spare time. One who for the first time had to take a pain pill during the day today. One who knows there are drugs out there that help her. One who has tasted victory and will not accept defeat. One who would do anything for those boys who call her mother.
Bring on your best. There is no match for this.
I am alive, in part (or mostly), because of these three reasons to live. They are the part of me I won't give up on. There have been many days I thought I could not go on. But they come out of their rooms in the sunny mornings, their bodies still warm and a little limp, open up my blanket, and curl up right beside me. Big eyes staring at the ceiling wondering what the day will bring.
There was this day last year, some serious fight stirring in me. I will need that magic again this week in a battle I didn't think I would have to fight. It's me against the insurance company. It's a long story, but basically 'the board' denied coverage for the trial. My mind was very clear as she read off the reasons why they made that decision, and when she was finished I debated every point with perfect logic. I just wish I could have said it with power! My voice was shamefully quivering. I was on the brink of sobbing my face off.
She said "Yes, I see what you're saying. Let me call you back." She took it directly to the head MD and called back an hour later. They are gathering information and will get back to me. They will pay for some at least, she assured me.
They better, I don't know who would want to deal with this angry mother. One who has researched this cancer, her options, and this drug in her spare time. One who for the first time had to take a pain pill during the day today. One who knows there are drugs out there that help her. One who has tasted victory and will not accept defeat. One who would do anything for those boys who call her mother.
Bring on your best. There is no match for this.
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