Ok cheerleaders.... we are almost there. I had three days off the med (Fri, Sat, Sun) instead of two. They gave me the choice to take it that third day or wait one more day and I still felt pretty awful on Sunday so I waited till Monday. I actually continued to improve through Wednesday though, my mouth feeling almost normal on Tues and Wed. I had energy on Wednesday and just felt good. It was wonderful.
Today is Thursday and I have now had 4 doses again so it is starting to build up in my system and bring back the queeziness, diarrhea, sore mouth etc. FUN! It's ok, I only have 3 more pills after today. I can do that no matter how sick I get. Depending on how this week finishes out, we will determine whether or not to drop my dose to start the next round.
Thank you for continuing to cheer me on. I have gotten such wonderful notes and calls and emails lately, just when I needed them. I am trying to keep a determined spirit, to fight this cancer with all I have and yet do it with a yieldedness to God's will for my life and my family. As I have said before, I KNOW He can heal me, and I pray that He will use this medicine to do so. But I also know that myself and my family have lessons to learn through this experience too, and I want to allow Him to teach me through it.
The business insurance issue continues to drag on..... we reached the christian agent who sold us the policy way back when. He left the insurance business to go into full time ministry a few years ago. He completely understands what is going on as a stall tactic from the company and he is willing to testify or write letters or whatever is needed to back us up that the policy is what we believe it to be and says what we understood it to say, that the intent of that policy is as we have documented, etc. Hopefully this will help as the insurance company itself has been trying to wangle every way they can to say it doesn't really mean this and doesn't really pay that etc. ARGH.
Please pray I will get through the last of this round with a proper attitude and with JOY, for all the blessings I have, and with HOPE for the future!
Karen
Thursday, August 30, 2007
Saturday, August 25, 2007
Rough Week
Well week 3 of the Sutent really threw me for a loop. I was very sick on Mon, Tues, Wed and Thurs. Every joint and muscle in my body ached, even my rib area started hurting pretty badly again. I could barely turn in bed or get up from a chair. And a splitting headache from the back of my neck up to my eyes. Sore mouth, no appetite, a little nausea, chills and hot/cold sweats alternating... it was lovely. By Thursday evening it finally started to ease up a bit. It's Friday now and I don't have the muscle pain or headache (much) anymore but my mouth is so very sore and I still have no appetite (not a great crash diet plan), nausea, etc. I am very weak and a bit dizzy.
The doctor decided to stop the med for 2 days to let my body rest and try to get my mouth to heal, then try to finish the round next week. Next time we do the cycle (after a 2 week rest) they will lower my dose to 37.5 mg instead of the 50 mg I was started on.
I am discouraged. I want to fight and fight hard. I feel like I wimped out here. I really didn't expect it to hit me this hard and I don't think the doctors did either.
Please pray that my mouth would heal up and I would gain some strength so that I can finish out this cycle next week. And that the med I had so far will already be finding and killing any cancer cells floating around... seems like it HAS to do something!
Thank you all,
Karen
The doctor decided to stop the med for 2 days to let my body rest and try to get my mouth to heal, then try to finish the round next week. Next time we do the cycle (after a 2 week rest) they will lower my dose to 37.5 mg instead of the 50 mg I was started on.
I am discouraged. I want to fight and fight hard. I feel like I wimped out here. I really didn't expect it to hit me this hard and I don't think the doctors did either.
Please pray that my mouth would heal up and I would gain some strength so that I can finish out this cycle next week. And that the med I had so far will already be finding and killing any cancer cells floating around... seems like it HAS to do something!
Thank you all,
Karen
Tuesday, August 21, 2007
Half-Way
Ok everyone. I made it through two weeks with relatively minor discomforts. If you call diarrhea and a sore mouth minor - haha! Really though it wasn't too bad. A bit tired a few days but mostly I could get some things done.
Yesterday it started to get a bit harder and today (Monday) I feel downright lousy. The docs told me week 2, 3 and 4 are the worst, and it will build up through the end of the 4th week so that by then I will be pretty exhausted. I can see now what they mean. It really does feel a lot like the flu, not that I have gotten the flu that often, thankfully. Today at 12 noon I just couldn't go on and had to lie down for over 2 hours. Even after getting up again I am dragging. The kids have been great, they took to cleaning their rooms (deep cleaning - sorting junk, dusting, vacuuming!) while I rested. How cool is THAT? I am so thankful for the other help we continue to get - dinner just arrived hot and ready to eat! Wow did I need that today.
I will keep this short - that tells you how I am feelin', huh? Just wanted to ask for prayer that over the next two weeks I can get the new homeschool year set up, get the kids books ordered etc while I am feeling lousy, and that I will not allow myself to become discouraged. I told the kids that if I feel this lousy, just imagine how lousy those cancer cells feel! haha! I keep telling those buggers "take that you nasty cancer cells, I am tougher than you are!.... and my God is tougher still." :-)
Thank you everyone,
Karen
Yesterday it started to get a bit harder and today (Monday) I feel downright lousy. The docs told me week 2, 3 and 4 are the worst, and it will build up through the end of the 4th week so that by then I will be pretty exhausted. I can see now what they mean. It really does feel a lot like the flu, not that I have gotten the flu that often, thankfully. Today at 12 noon I just couldn't go on and had to lie down for over 2 hours. Even after getting up again I am dragging. The kids have been great, they took to cleaning their rooms (deep cleaning - sorting junk, dusting, vacuuming!) while I rested. How cool is THAT? I am so thankful for the other help we continue to get - dinner just arrived hot and ready to eat! Wow did I need that today.
I will keep this short - that tells you how I am feelin', huh? Just wanted to ask for prayer that over the next two weeks I can get the new homeschool year set up, get the kids books ordered etc while I am feeling lousy, and that I will not allow myself to become discouraged. I told the kids that if I feel this lousy, just imagine how lousy those cancer cells feel! haha! I keep telling those buggers "take that you nasty cancer cells, I am tougher than you are!.... and my God is tougher still." :-)
Thank you everyone,
Karen
Tuesday, August 14, 2007
One Week Down, Three To Go
Well everyone. One week down on SUTENT and I am still on top of things.. sorta. It does make me tired at the end of the day, and my stomach isn't feeling that great, but it's not too bad. They say week 2, 3 and 4 are the hardest so we shall see. I doubt it will be unbearable though, based on things so far. We are still having help with dinners several days a week, which really takes the pressure off me so I can use my energy and strength on all the other things of life here. For that we are so grateful.
Our insurance company finally admitted that they owe us some money (DUH) but made us such a rediculous offer that we have to press them harder to get even close to what is fair. I suppose it is a start. We don't understand why our policy can SAY that they owe us for A B and C, but when we give them all the documentation of those costs for A B and C, they can stall for months and then say, "how about we just pay you for A? WHY would we say OK to that? ARGH. Anyway please do keep praying about this as it is an extreme strain on Charles and I. The kids need dental checkups and stuff that we just hate to keep stalling any longer. I have taken to praising the Lord for keeping our car, washer, dryer, frig, dishwasher etc running all this time with no repairs. It's like the shoes that didn't wear out for the Israelites! And the meals coming is like our manna - only much tastier. :-)
We have been blessed in that we had that week at the shore for my parents anniversary and were able to go to their mountain home for a long weekend without any cost too. Friends recently gave us some money to do something fun as a family and we went to Cowtown Rodeo for Evan's 12th birthday - we all LOVED it. It was so fun seeing the different kids reactions. Ethan was confused as to why anyone would purposely get on a bull knowing full well they would be thrown off and get hurt. Evan laughed hard at each crash of course! Claudia wanted to volunteer to try the broncos herself! Anya just loved seeing real "cowboys" and bought herself a hat, and Kristina just adored the ladies in their fancy riding outfits. It was a lot of fun. I really enjoy these small pleasures of life so much and treasure each special moment with my family.
Thank you for continuing to check on us via this blog, and in other ways, through mutual friends or seeing us at church, etc. I still get some cards in the mail with encouraging scriptures on them, or see people who say they pray for us each day, or have my name on their desk to remember to pray for me. Thank you for staying with us for the long haul. We need you all.
Love,
Karen
Our insurance company finally admitted that they owe us some money (DUH) but made us such a rediculous offer that we have to press them harder to get even close to what is fair. I suppose it is a start. We don't understand why our policy can SAY that they owe us for A B and C, but when we give them all the documentation of those costs for A B and C, they can stall for months and then say, "how about we just pay you for A? WHY would we say OK to that? ARGH. Anyway please do keep praying about this as it is an extreme strain on Charles and I. The kids need dental checkups and stuff that we just hate to keep stalling any longer. I have taken to praising the Lord for keeping our car, washer, dryer, frig, dishwasher etc running all this time with no repairs. It's like the shoes that didn't wear out for the Israelites! And the meals coming is like our manna - only much tastier. :-)
We have been blessed in that we had that week at the shore for my parents anniversary and were able to go to their mountain home for a long weekend without any cost too. Friends recently gave us some money to do something fun as a family and we went to Cowtown Rodeo for Evan's 12th birthday - we all LOVED it. It was so fun seeing the different kids reactions. Ethan was confused as to why anyone would purposely get on a bull knowing full well they would be thrown off and get hurt. Evan laughed hard at each crash of course! Claudia wanted to volunteer to try the broncos herself! Anya just loved seeing real "cowboys" and bought herself a hat, and Kristina just adored the ladies in their fancy riding outfits. It was a lot of fun. I really enjoy these small pleasures of life so much and treasure each special moment with my family.
Thank you for continuing to check on us via this blog, and in other ways, through mutual friends or seeing us at church, etc. I still get some cards in the mail with encouraging scriptures on them, or see people who say they pray for us each day, or have my name on their desk to remember to pray for me. Thank you for staying with us for the long haul. We need you all.
Love,
Karen
Friday, August 3, 2007
Medication Approved!
After a few more faxes and calls I got the word today directly from the local pharmacist that my Sutent prescription has been received, the medication is on order (it is not a stock item which I knew), and the pre-approval process is complete so I will have the med on Monday afternoon. Not sure if I will have time to pick it up and start it on Monday or on Tuesday. Talked to the nurse practitioner at Dr Flaherty's office (Penn Oncology) about the side effects and she was pretty encouraging. I expect to be increasingly fatigued the first 4 weeks and then it should level off to more manageable levels. There are some other side effects, hopefully they will be relatively mild. Saw the kidney surgeon today - he is the one with the "colorful" manner but caring heart. His quote, "you look a h___ of a lot better than you did 8 weeks ago in that ICU bed" Now there's a compliment, huh?
We finally heard from our attorney who got a (no surprise) ridiculously low offer from our business insurance company. We told him we want what the policy says we are to be paid and nothing less. :-( So he is working on getting them closer to what is fair. We really need God to help us in this - it is so stressful to wait all this time for any reimbursement. Please pray that this situation would soon be resolved satisfactorily. I suppose it is progress that they made any offer at all after no response for 2 years............ Secondly, please pray that the judge would issue a favorable ruling on the other part of this, from the hearing in May (with the trucking company who hit Charles).
BTW I have been sleeping pretty well most nights now, and can even lay on my right side and move in my sleep without waking up much on most nights. This is a huge help to my general well-being. (Thank you Barbara for that memory foam mattress cover - FANTASTIC!) On the worrying issue - I have poured over the scriptures and cards that everyone has shared and they really encourage me. I am also feeling well enough to be busy with the kids and stuff which helps keep my mind occupied. Trying to take one day at a time and not project my worry too far into the future right now. If bad news comes someday, at least I will have tried to enjoy being healthy while I can!
Charles helped me finish the last of the pages in the homeschool portfolios late last night (I have to start getting to bed earlier now) and took them all to the school district this morning so that is DONE. HOORAH! Now its time to plan this coming year. I have some good leads on a few classes to help me with the teaching and also will consider some DVD supplementation and other helps. But it all costs money, so... back to the insurance settlement and judge ruling prayer requests!
Thank you everyone,
Karen and the gang
We finally heard from our attorney who got a (no surprise) ridiculously low offer from our business insurance company. We told him we want what the policy says we are to be paid and nothing less. :-( So he is working on getting them closer to what is fair. We really need God to help us in this - it is so stressful to wait all this time for any reimbursement. Please pray that this situation would soon be resolved satisfactorily. I suppose it is progress that they made any offer at all after no response for 2 years............ Secondly, please pray that the judge would issue a favorable ruling on the other part of this, from the hearing in May (with the trucking company who hit Charles).
BTW I have been sleeping pretty well most nights now, and can even lay on my right side and move in my sleep without waking up much on most nights. This is a huge help to my general well-being. (Thank you Barbara for that memory foam mattress cover - FANTASTIC!) On the worrying issue - I have poured over the scriptures and cards that everyone has shared and they really encourage me. I am also feeling well enough to be busy with the kids and stuff which helps keep my mind occupied. Trying to take one day at a time and not project my worry too far into the future right now. If bad news comes someday, at least I will have tried to enjoy being healthy while I can!
Charles helped me finish the last of the pages in the homeschool portfolios late last night (I have to start getting to bed earlier now) and took them all to the school district this morning so that is DONE. HOORAH! Now its time to plan this coming year. I have some good leads on a few classes to help me with the teaching and also will consider some DVD supplementation and other helps. But it all costs money, so... back to the insurance settlement and judge ruling prayer requests!
Thank you everyone,
Karen and the gang
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