Things are going so well. Down to two tumors I can feel. Nothing new has popped up. Incredible.
This is my last week of steroids. I have an IPI infusion scheduled for the 7th. One more week to play and feel great. I will take it!
Overwhelmed that this medicine is working. I seriously can't believe it. I am trying really hard not to get my expectations too high (we have seen mixed results before, and a response does not mean a complete, or a long term response), but it is extremely difficult. I am saturated in hope.
We scan again in September. I didn't even know if I would be around in September.
Just so happy to be alive. It's that simple. Joy everyday.
We had some pictures taken early this summer at our house. Thanks to Emily Blodgett for the make up and hook up, and thanks to Jess Curren for the lovely photos!
Monday, July 30, 2012
Monday, July 23, 2012
it could be worse
I haven't been reading much the last 6 months. Haven't had the attention span required for a novel.
But this week, it was time. Time to loose myself in another's perspective for a while.
I skimmed my color coded bookcase for the right thing. Something new? No. Maybe something very familiar. I touched and considered some of my favorites. In the whites: Enchanted April, The Glass castle, Tale of Two Cities, The Gurnsery Literary and Potato Peel Pie Society. No... The Blues: Peace Like a River, Anne Of Green Gables, The Joy Luck Club, all of Austin. The greens: Anna Karenina, Little Women, No. 1 Ladies Detective Agency, To Kill a Mockingbird, Harry Potter. The Yellows: The Secret Life of Bees, Dandelion Wine, Shakespeare, My Antonia, The Poisonwood Bible, Watership Down. Reds: Life of Pi, Huck Finn, Three Cups of Tea, Battle Hymn of the Tiger Mother. Hmmm. All lovely. But not quite....for what could be my last read... And then, my eyes froze in the browns. The Hiding Place. I read it as a teenager. It changed my life. I found it at our thrift store last year, and forgot about it. A beat up old paperback.
I think I stopped there because I keep telling myself "Well, it could be worse." I tell myself this often and have wondered why in the world that should give me any comfort. Surely the fact that the situation could be a lot more complicated or serious does not make me feel any better? Certainly the fact that others have suffered FAR beyond anything I have does not give me a sense of peace? Why then, do I get some comfort in knowing that indeed it could be worse (you don't have to have a great imagination here as everything but the cancer is so wonderful right now, there are many possibilities)?
The Hiding Place is a memoir of a family in the midst of the Holocaust. As dark of a situation as it gets.
Two sisters (Corrie and Betsie Ten Boom) from Holland are sent to a German extermination camp. They would suffer unimaginable treatment. And yet their Christian faith lets them live beyond the suffering. It helps them find joy, and most importantly, their faith helps others. It is truly inspiring.
The last words of Betsie, dying in the most inhumane conditions (where nintey-six thousand woman would die), were, "We must go everywhere. We must tell people that no pit is so deep that He is not deeper still. They will believe us, because we were here."
And so, this was the perfect selection for me. I needed to be reminded that even in the worst case scenarios people walk out, heal, move on. God will give us the strength to carry on.
This week was hard on the country as we learned about the Colorado shooting. I read this viral blog post by one of the survivors. I thought it was well said.
If I try to make sense in all this chaos, I get confused. Even the faithful Ten Boom sisters had their moments of despair and doubt. I try to remember that I don't need to figure it out, I just need to trust that God is good enough to triumph over all the tragedies that happen to us.
I needed that message.
But this week, it was time. Time to loose myself in another's perspective for a while.
I skimmed my color coded bookcase for the right thing. Something new? No. Maybe something very familiar. I touched and considered some of my favorites. In the whites: Enchanted April, The Glass castle, Tale of Two Cities, The Gurnsery Literary and Potato Peel Pie Society. No... The Blues: Peace Like a River, Anne Of Green Gables, The Joy Luck Club, all of Austin. The greens: Anna Karenina, Little Women, No. 1 Ladies Detective Agency, To Kill a Mockingbird, Harry Potter. The Yellows: The Secret Life of Bees, Dandelion Wine, Shakespeare, My Antonia, The Poisonwood Bible, Watership Down. Reds: Life of Pi, Huck Finn, Three Cups of Tea, Battle Hymn of the Tiger Mother. Hmmm. All lovely. But not quite....for what could be my last read... And then, my eyes froze in the browns. The Hiding Place. I read it as a teenager. It changed my life. I found it at our thrift store last year, and forgot about it. A beat up old paperback.
I think I stopped there because I keep telling myself "Well, it could be worse." I tell myself this often and have wondered why in the world that should give me any comfort. Surely the fact that the situation could be a lot more complicated or serious does not make me feel any better? Certainly the fact that others have suffered FAR beyond anything I have does not give me a sense of peace? Why then, do I get some comfort in knowing that indeed it could be worse (you don't have to have a great imagination here as everything but the cancer is so wonderful right now, there are many possibilities)?
The Hiding Place is a memoir of a family in the midst of the Holocaust. As dark of a situation as it gets.
Two sisters (Corrie and Betsie Ten Boom) from Holland are sent to a German extermination camp. They would suffer unimaginable treatment. And yet their Christian faith lets them live beyond the suffering. It helps them find joy, and most importantly, their faith helps others. It is truly inspiring.
The last words of Betsie, dying in the most inhumane conditions (where nintey-six thousand woman would die), were, "We must go everywhere. We must tell people that no pit is so deep that He is not deeper still. They will believe us, because we were here."
And so, this was the perfect selection for me. I needed to be reminded that even in the worst case scenarios people walk out, heal, move on. God will give us the strength to carry on.
This week was hard on the country as we learned about the Colorado shooting. I read this viral blog post by one of the survivors. I thought it was well said.
If I try to make sense in all this chaos, I get confused. Even the faithful Ten Boom sisters had their moments of despair and doubt. I try to remember that I don't need to figure it out, I just need to trust that God is good enough to triumph over all the tragedies that happen to us.
I needed that message.
Thursday, July 19, 2012
foram samuel
I found this on my nightstand as I was getting ready for bed.
All his money. I rushed into Sam's room. He was already sleeping. I kissed and thanked him, just the same. Love his sweet little heart.
I sleep tonight the richest girl in the world.
I sleep tonight the richest girl in the world.
Tuesday, July 17, 2012
bulllet proof
Had a great visit with the Doctor today. I couldn't wait to report all my tumor shrinkage (and more importantly that I have felt nothing new pop up since we saw him last). I felt like a child with a new trick for his parents. I had one especially ugly tumor near my right arm pit. You could see the black tumor through the skin. It was so ugly. I thought I would never be able to wear a swimsuit again. Well now it is a tiny round ball. So small I don't know what to compare it to, maybe a seed? All other tumors shrunk or disappeared. The back stabber-GONE.
And guess what he tells me? He says he thinks it's the IPI that is working! He says the Temodar is not that potent of a chemo to respond so quickly. What?!
If it is possible to feel bullet proof and completely humble at the same time, it was me, then, there.
But then the trouble was explained. I have to get off of steroids before I can do another round of IPI. I tapered down this week (started taking half the dose) with maybe not so perfect results. If I can't get the diarrhea under control without steroids I could loose my chance at doing IPI again. Very real possibility with the reaction I had.
I keep singing that song. I start the Temador again tonight. And hope so much that in three weeks I will be able to add IPI to it. Because dang it! It's working!
And guess what he tells me? He says he thinks it's the IPI that is working! He says the Temodar is not that potent of a chemo to respond so quickly. What?!
If it is possible to feel bullet proof and completely humble at the same time, it was me, then, there.
But then the trouble was explained. I have to get off of steroids before I can do another round of IPI. I tapered down this week (started taking half the dose) with maybe not so perfect results. If I can't get the diarrhea under control without steroids I could loose my chance at doing IPI again. Very real possibility with the reaction I had.
 | ||
| At the Huntsman Cancer Institute. | "Fire away, fire away. I'm bulletproof, nothing to lose fire away, fire away ricochet, you take your aim fire away, fire away you shoot me down, but I won't fall I am titanium you shoot me down, but I won't fall I am titanium." |
technical difficulties
I have been trying for an hour to rearrange the pictures on that last post, but something is wrong with blogger. Hope to resolve that so they make sense, but in the mean time I need to post about the doctor visit today....
Monday, July 16, 2012
performance inhanced life
The steroids!! What a difference! My mind and body are just
racing with things to do. I have been planning parties, cleaning out
cupboards, creating to do lists and actually getting them
done. Steroids are AWESOME!
This week included (but was not limited to):
This week included (but was not limited to):
Thursday, July 12, 2012
p.s.
 |
| Ginger is recovering well. She has a look in her eyes now, a little too wise, a little too sad. The kind of depth you get with a brush of death. Welcome to the club big girl. |
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