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. |
equilibrium
It's a balancing act, really.
Cancer kind of simplifies life in a way. You get down to the basics. And it complicates things. You have to learn new tricks. Tricks they can't teach you in a manual. You have to think differently. You have to talk to people differently. Delicately. You have to weigh your options.
To live like I am going to die, or die like I am going to live?
Most people are not comfortable with me talking either way. I am not exactly comfortable with either. I guess the easy answer is I might die soon. I probably will. But what does that future do to the present? It all seems a little warped. There must be a middle ground that can satisfy both options. I pray to find it everyday. I try to find the right words to say.
But there are no words. There is nothing right about this situation. It doesn't feel good. It's not fun to talk about. It's not easy to think about.
It doesn't fit me. Especially, it seems, around the neck. And so I am always tugging and pulling.
I have struggled with the brain met issue. This is not something I can ignore. Can't leave it out of the equation.
When I was first diagnosed with stage IV, I asked, "So, how does melanoma actually kill you? Does it get so big in your organs that it causes them to fail?" The Dr. said death usually occurs because of uncontrolled brain metastasis. Thank goodness I didn't have any of those, thought I.
I felt, I have to be realistic at that point (the 25 brain mets point). We were very up front with the kids. Luke kept telling me, "Mom! Don't tell your kids that kind of stuff!" And maybe I shouldn't. But I would hate for this to come as a super shock.
I seem to get a little peace out of working out a plan (the nanny idea did not go well with the boys, we have finally worked out what we think is a great arrangement, should Something happen). I guess I would rather be prepared. Trying to, again, walk that line between realistic hopes and...as I'm typing this I'm wondering what 'realistic hopes' are.
The thing is, I am also prepared for a miracle. No work required there (or do I need more faith?). A heart is always prepared for a miracle. It would be so easy to fit into this story. It goes along with everything I said, and believe. It matches everything I wear. It would be the most becoming addition to this pretty existence.
So, when the kids still pray for all Mom's cancer to go away, I let them. Let them lean to that side.
And besides, my tumors continue to shrink. Like crazy, even. I realize it is most likely the workings of the chemo (temodar), and its effects are short term.
Still.
It does seem at the end of a day (especially a summer day) I find myself loving my life. Despite the bad parts. It is not to scale. The good, every time I think about it, outweighs the bad. The surplus is astounding. I love the very body that is attacking me. The things that are breaking my heart I cherish above anything. The kids that have to hear and consider some really hard stuff...they are thriving.
The world is a beautiful place. And here I am. On two feet.
Cancer kind of simplifies life in a way. You get down to the basics. And it complicates things. You have to learn new tricks. Tricks they can't teach you in a manual. You have to think differently. You have to talk to people differently. Delicately. You have to weigh your options.
To live like I am going to die, or die like I am going to live?
Most people are not comfortable with me talking either way. I am not exactly comfortable with either. I guess the easy answer is I might die soon. I probably will. But what does that future do to the present? It all seems a little warped. There must be a middle ground that can satisfy both options. I pray to find it everyday. I try to find the right words to say.
But there are no words. There is nothing right about this situation. It doesn't feel good. It's not fun to talk about. It's not easy to think about.
It doesn't fit me. Especially, it seems, around the neck. And so I am always tugging and pulling.
I have struggled with the brain met issue. This is not something I can ignore. Can't leave it out of the equation.
When I was first diagnosed with stage IV, I asked, "So, how does melanoma actually kill you? Does it get so big in your organs that it causes them to fail?" The Dr. said death usually occurs because of uncontrolled brain metastasis. Thank goodness I didn't have any of those, thought I.
I felt, I have to be realistic at that point (the 25 brain mets point). We were very up front with the kids. Luke kept telling me, "Mom! Don't tell your kids that kind of stuff!" And maybe I shouldn't. But I would hate for this to come as a super shock.
I seem to get a little peace out of working out a plan (the nanny idea did not go well with the boys, we have finally worked out what we think is a great arrangement, should Something happen). I guess I would rather be prepared. Trying to, again, walk that line between realistic hopes and...as I'm typing this I'm wondering what 'realistic hopes' are.
The thing is, I am also prepared for a miracle. No work required there (or do I need more faith?). A heart is always prepared for a miracle. It would be so easy to fit into this story. It goes along with everything I said, and believe. It matches everything I wear. It would be the most becoming addition to this pretty existence.
So, when the kids still pray for all Mom's cancer to go away, I let them. Let them lean to that side.
And besides, my tumors continue to shrink. Like crazy, even. I realize it is most likely the workings of the chemo (temodar), and its effects are short term.
Still.
It does seem at the end of a day (especially a summer day) I find myself loving my life. Despite the bad parts. It is not to scale. The good, every time I think about it, outweighs the bad. The surplus is astounding. I love the very body that is attacking me. The things that are breaking my heart I cherish above anything. The kids that have to hear and consider some really hard stuff...they are thriving.
The world is a beautiful place. And here I am. On two feet.
Sunday, July 8, 2012
an interesting night last night
We had the chance to go to my my nephew's Make a Wish Party. Remember we were worried he would choose Yellowstone? He made the best decision and chose Hawaii! Make a Wish is a pretty neat organization. I would encourage you to donate whenever you get the chance (sometimes the grocery stores will ask for a buck or something at check-out). I think the whole experience, from deciding on a wish, the anticipation of the trip, the trip itself, to the happy memories he has forever were just what Steven and other childhood cancer fighters need.
Unfortunately, we had to leave early because I was hurting. I was paying for the few bites of pizza that I just couldn't resist because remember, I'm starving. Bummer.
It is a good thing we came home.
We walked in the door and received the usual over-the-top greeting from Ginger. We took her to run a couple errands with us, and got home in time to do a few things in the yard. Ginger was at our heels the whole time. We came in when it got dark. Ginger acted like she was going to throw up, so we sent her outside. A while later (maybe half an hour?) Josh called for her, but she wouldn't come. I was stepping into the bath when Josh found her, brought her in and said, "Does she look normal?" Her chest was doubled in size, she frothy at the mouth, and had painful look in her eye. Josh touched her belly and she whimpered.
I remembered reading about a stomach complication with large, deep-chested dogs. I read poodles were susceptible to the stomach turning and trapping air (GVD, or bloat). He was looking numbers up on the computer, I told him this is an emergency, she needs an ambulance, and he was the ambulance, so please go now. He was talking to the vet hospital on their way out and they were looking for the closest 24 care for us, because if it was a stomach issue, time was a concern.
I don't know if the steroids have started giving me mood swings or what, but as they drove off I lost it in the bathtub.
It was there that I offered the sincerest prayer of my life. Over that dumb dog!
Heavenly Father, please don't take our dog! This family needs Ginger. I am counting on her if something happens to me. She has been a special furry glue for our little family through the last few years. She is our common ground. She is our only therapist. She is Josh's little shadow and Sam's little sister. She is my big girl.
Love is what makes you happy (This is the biggest truth I've learned). She is literally a huge source of happiness for us because we all love her so very much.
Josh texted from the vet hospital. The Dr. said if we don't do something she will die.
We can't afford to lose her now. Are you kidding? We can't deal with any more loss in the family. We lost our cat a few months ago (I will have to find that post and publish it). It was so hard on us.
We had no choice but to let them do the operation to turn her stomach around and staple it to the chest wall so it hopefully doesn't happen again.
After the bath, my tears and eye-wiping had produced a mess of mascara on my face. Through my tears, and without my contacts, I searched for the make-up remover pads. They weren't in the normal place, so I searched everywhere, and I was happy to finally find them in a separate cupboard further away. I rubbed my eyes and surrounding areas, and felt an immediate sting. Or are these my make-up remover pads? On closer inspection, they turned out to be hemmorhoidal pads!!!
Poison control got a call from some weird lady with some pretty crazy excuses for making ridiculous decisions. Oh, the humiliation! And to think of the all real poisons that I have put up with.
For the record, it did remove the make up.
I keep giggling about it today. And Ginger may be home tomorrow, so all is well. The steroids are for sure starting to do their job. I ate dinner tonight! It might have only been a peanut butter sandwich, but I was the happiest person on earth. Food!!
I am grateful today for answered prayers. And that witch hazel does not cause blindness. ;)
 |
| Steven has been a great example to me. He has been so stinking tough. He has moved past cancer and is full speed ahead. He does not let his amputation get in his way of anything. I am so proud of him! |
Unfortunately, we had to leave early because I was hurting. I was paying for the few bites of pizza that I just couldn't resist because remember, I'm starving. Bummer.
It is a good thing we came home.
We walked in the door and received the usual over-the-top greeting from Ginger. We took her to run a couple errands with us, and got home in time to do a few things in the yard. Ginger was at our heels the whole time. We came in when it got dark. Ginger acted like she was going to throw up, so we sent her outside. A while later (maybe half an hour?) Josh called for her, but she wouldn't come. I was stepping into the bath when Josh found her, brought her in and said, "Does she look normal?" Her chest was doubled in size, she frothy at the mouth, and had painful look in her eye. Josh touched her belly and she whimpered.
I remembered reading about a stomach complication with large, deep-chested dogs. I read poodles were susceptible to the stomach turning and trapping air (GVD, or bloat). He was looking numbers up on the computer, I told him this is an emergency, she needs an ambulance, and he was the ambulance, so please go now. He was talking to the vet hospital on their way out and they were looking for the closest 24 care for us, because if it was a stomach issue, time was a concern.
I don't know if the steroids have started giving me mood swings or what, but as they drove off I lost it in the bathtub.
It was there that I offered the sincerest prayer of my life. Over that dumb dog!
Heavenly Father, please don't take our dog! This family needs Ginger. I am counting on her if something happens to me. She has been a special furry glue for our little family through the last few years. She is our common ground. She is our only therapist. She is Josh's little shadow and Sam's little sister. She is my big girl.
Love is what makes you happy (This is the biggest truth I've learned). She is literally a huge source of happiness for us because we all love her so very much.
Josh texted from the vet hospital. The Dr. said if we don't do something she will die.
We can't afford to lose her now. Are you kidding? We can't deal with any more loss in the family. We lost our cat a few months ago (I will have to find that post and publish it). It was so hard on us.
We had no choice but to let them do the operation to turn her stomach around and staple it to the chest wall so it hopefully doesn't happen again.
After the bath, my tears and eye-wiping had produced a mess of mascara on my face. Through my tears, and without my contacts, I searched for the make-up remover pads. They weren't in the normal place, so I searched everywhere, and I was happy to finally find them in a separate cupboard further away. I rubbed my eyes and surrounding areas, and felt an immediate sting. Or are these my make-up remover pads? On closer inspection, they turned out to be hemmorhoidal pads!!!
Poison control got a call from some weird lady with some pretty crazy excuses for making ridiculous decisions. Oh, the humiliation! And to think of the all real poisons that I have put up with.
For the record, it did remove the make up.
I keep giggling about it today. And Ginger may be home tomorrow, so all is well. The steroids are for sure starting to do their job. I ate dinner tonight! It might have only been a peanut butter sandwich, but I was the happiest person on earth. Food!!
I am grateful today for answered prayers. And that witch hazel does not cause blindness. ;)
Friday, July 6, 2012
retreat!
I have been waiting to feel better to post a hello and all is well.
We have had a rough week. I was tired the days after chemo. Fatigued. I think it was caused by the Temodar. Sunday I felt pretty crummy, and thought I could cure it by a walk in the mountains. It was beautiful, but I felt no better.
Monday we added some serious cramps and diarrhea. Josh notes here that I really am living my worst nightmare if I have to talk about my bowel habits. I am pretty private.
I called and reported what was happening on Tuesday and they had me go directly to the the acute care clinic. On our way out the door I noticed our beautiful mountains that we were just enjoying covered in smoke. Heartbreak. We got some IV fluids at the hospital, and of course ran some tests. We have been hoping that this was bacteria or viral caused.
We just got the results and unfortunately, I am turning on myself, and have developed colitis as an immune response.
I started high dose prednisone (a steroid) today, and will taper off weekly for a month. And then we can do IPI again.
I pressed hard to make sure this is the right course. I asked if there was anything else I could do, if I could try and wait it out, if it would possibly go away on it's own. She said no way, I needed steroids now. I guess my lab numbers that test for this are very high. In the IPI trials, the untreated colitis sometimes ended up in bowel perfusion, and this is what killed people.
The thing is, a steroid to stop the inflammatory response is opposite of what the IPI is trying to do. A steroid suppresses the immune system. I am trying to boost it. It's not like the steroids mean the IPI will not work. But it can't be helping.
Yesterday it rained all day in the valley and up in the mountains. I took it as a sign. I felt my target tumors. The largest two are half their size. The smallest have not gotten any bigger since we started this last combo drug. And I don't know if it's the IPI or the Temodar (more likely, as IPI takes a while to work, but then again, it usually takes a while to develop colitis too), but the cancer is responding to something.
And so, we are a bit discouraged by this little delay in our plan. But honestly, I can't live like I am for long. Everything is going through me. I don't eat at all during the day, because if I do I cramp like nothing else, and I find it undigested in the toilet. I am drinking gatorade and feeling like that should do it (a sugary drink, against every cancer diet, but what can I do at this point?). I can drink about 2 160 calorie jugs a day, which I could survive on for about...?
I don't really like the story problems I'm dealing with lately.
So steroids it is. In a month I can do another round of IPI. So we won't be too behind the schedule, and we get to take the Temodar as scheduled.
They say I should be feeling good in a couple of days.
Not ideal. But we are far from the ideal situation here. At least I will be able to eat. I'm starving!!!
We have had a rough week. I was tired the days after chemo. Fatigued. I think it was caused by the Temodar. Sunday I felt pretty crummy, and thought I could cure it by a walk in the mountains. It was beautiful, but I felt no better.
Monday we added some serious cramps and diarrhea. Josh notes here that I really am living my worst nightmare if I have to talk about my bowel habits. I am pretty private.
I called and reported what was happening on Tuesday and they had me go directly to the the acute care clinic. On our way out the door I noticed our beautiful mountains that we were just enjoying covered in smoke. Heartbreak. We got some IV fluids at the hospital, and of course ran some tests. We have been hoping that this was bacteria or viral caused.
We just got the results and unfortunately, I am turning on myself, and have developed colitis as an immune response.
I started high dose prednisone (a steroid) today, and will taper off weekly for a month. And then we can do IPI again.
I pressed hard to make sure this is the right course. I asked if there was anything else I could do, if I could try and wait it out, if it would possibly go away on it's own. She said no way, I needed steroids now. I guess my lab numbers that test for this are very high. In the IPI trials, the untreated colitis sometimes ended up in bowel perfusion, and this is what killed people.
The thing is, a steroid to stop the inflammatory response is opposite of what the IPI is trying to do. A steroid suppresses the immune system. I am trying to boost it. It's not like the steroids mean the IPI will not work. But it can't be helping.
Yesterday it rained all day in the valley and up in the mountains. I took it as a sign. I felt my target tumors. The largest two are half their size. The smallest have not gotten any bigger since we started this last combo drug. And I don't know if it's the IPI or the Temodar (more likely, as IPI takes a while to work, but then again, it usually takes a while to develop colitis too), but the cancer is responding to something.
And so, we are a bit discouraged by this little delay in our plan. But honestly, I can't live like I am for long. Everything is going through me. I don't eat at all during the day, because if I do I cramp like nothing else, and I find it undigested in the toilet. I am drinking gatorade and feeling like that should do it (a sugary drink, against every cancer diet, but what can I do at this point?). I can drink about 2 160 calorie jugs a day, which I could survive on for about...?
I don't really like the story problems I'm dealing with lately.
So steroids it is. In a month I can do another round of IPI. So we won't be too behind the schedule, and we get to take the Temodar as scheduled.
They say I should be feeling good in a couple of days.
Not ideal. But we are far from the ideal situation here. At least I will be able to eat. I'm starving!!!