No More Port!
Tim and I returned to Little Rock on Thursday. We had to be there at 5:00am so we were up at 2:00am and left the house by 3:00am. My surgery was the first one scheduled for the day which was a good thing because we were in and out quickly. Removing the peritoneal port was much easier than inserting it, Thank You!
I've done a lot of thinking over the past week, not much else to do when you're laying there bored out of your gourd! I made a tough decision with input from my husband, children, parents, friends, etc.to discontinue the clinical trial. This would eliminate the experimental drug, Avastin which is the drug messing with my blood pressure. There were several times in the last two weeks where my blood pressure was extremely high even while taking a blood pressure medicine. The only benefit to the drug that I could put on the plus side was "Maybe" one more year of life. That maybe year doesn't do me any good if I have a stroke or am incapacitated to where I can't function or work. I would rather focus on a few very good years. SO, in other words I will finish the nasty chemo in October and then I can get on with life and enjoy it to be best of my humor and ability.
I have already talked to Dr. Stone and she was very supportive, WooHoo!
I will go for chemo again, (counts willing, right now they are low) on the 7th of September and continue (counts willing) every Tuesday for 6 weeks after that. No more overnights in Little Rock! I feel good about my decision and I hope all of you do also, if not, a big slobbery raspberry to you!
Sunday, August 29, 2010
Monday, August 23, 2010
Niagara Falls as Not Normal!
Apparently Niagara Falls was not normal. Last Tuesday when we got home and all the fluid poured out, that was not normal. I talked with the nurses in Little Rock on Thursday and they spoke with Dr. Stone, and said I needed to return to Little Rock on Friday. Which Tim and I did, and spent the entire day having exams and tests run. We got there at 8:30 AM and left the hospital at 6:00PM. We both had our patience tried several times! There is a perforation between my peritoneal cavity and the vagina cusp. Just an itty bitty hole but enough for all that fluid to find it just like a crack in the dyke! SO, no more peritoneal chemo. I will go up to Little Rock this week and have the peritoneal port removed (which is a good thing). We are switching to another arm of the clinical trial which will administer all chemo through the medi-port in my chest. It also entails changing from the Cisplatin chemo to Carboplatin. Carboplatin is less toxic to my kidneys but more toxic to my blood counts. Doesn't seem like much of a trade-off. This also means we delay chemo for a week or two, and you all know how I feel about that! The little itty bitty tear in the abdomen will hopefully heal on its own. Dr. Stone does not want to compromise the area any more than necessary, I'm good with that!
The last few days have been pretty rough. I can't taste anything and I feel like I have dog hairs and gauze pads on my tongue. Mouth sores are not responding as well to the "MIles Miracle Mouthwash." My blood pressure has been spiking, one time to 180/116 and the only way to keep it down seems to be to lay down and stay off my feet! I'm really tired of being tired and laying down! Can you tell, I have a bad case of the grumpies?? God, please give me patience, I am trying to maintain here!
Apparently Niagara Falls was not normal. Last Tuesday when we got home and all the fluid poured out, that was not normal. I talked with the nurses in Little Rock on Thursday and they spoke with Dr. Stone, and said I needed to return to Little Rock on Friday. Which Tim and I did, and spent the entire day having exams and tests run. We got there at 8:30 AM and left the hospital at 6:00PM. We both had our patience tried several times! There is a perforation between my peritoneal cavity and the vagina cusp. Just an itty bitty hole but enough for all that fluid to find it just like a crack in the dyke! SO, no more peritoneal chemo. I will go up to Little Rock this week and have the peritoneal port removed (which is a good thing). We are switching to another arm of the clinical trial which will administer all chemo through the medi-port in my chest. It also entails changing from the Cisplatin chemo to Carboplatin. Carboplatin is less toxic to my kidneys but more toxic to my blood counts. Doesn't seem like much of a trade-off. This also means we delay chemo for a week or two, and you all know how I feel about that! The little itty bitty tear in the abdomen will hopefully heal on its own. Dr. Stone does not want to compromise the area any more than necessary, I'm good with that!
The last few days have been pretty rough. I can't taste anything and I feel like I have dog hairs and gauze pads on my tongue. Mouth sores are not responding as well to the "MIles Miracle Mouthwash." My blood pressure has been spiking, one time to 180/116 and the only way to keep it down seems to be to lay down and stay off my feet! I'm really tired of being tired and laying down! Can you tell, I have a bad case of the grumpies?? God, please give me patience, I am trying to maintain here!
Wednesday, August 18, 2010
Niagara Falls?
I finished #10 and #11 chemo treatments Monday and yesterday. Yesterday was the Cisplatin (4 liters of fluid, 2 straight to the abdomen) which is the booger-bear treatment that seems to bring me down the most. It is also the one that leaves me looking like a pregnant cockroach for several days. But this time all the fluid is coming out fast and furious! Niagara Falls has got nothing on Kathi Hickerson!! Depends have become my best friend today! (and desitin for the after effects!) who would have thunk it?? This is just not cool for a 53 year old or as a friend of mine says 40-13 year old lady, who, believe it or not is somewhat modest. Lately modesty seems to be hiding behind the curtains or under the couch. Pooting is something I have avoided in my life, just not something I find pleasant to discuss or to do, unlike my children who in their younger days would hold contests! Don't mean to gross anyone out but if you have had teenagers (and especially boys) you have had farting contests. Anyway back to me, this fluid in my abdomen tends to change everything inside of me so "the winds" are involuntary and could be embarrassing if I'm not careful and squeezing when I can, but the squeezing brings on Niagara Falls so I can't win for losing! God has a strange sense of humor when it comes to teaching me humility!
I feel my fade coming on but I wanted to update everyone and let you know I'm getting there. Hurley is warming up the foot of my bed and I will crawl over Sampson to lay down for the rest of the day. Update you again when I can. God love you and hope for babbling brooks instead of waterfalls and quiet bowels!
I finished #10 and #11 chemo treatments Monday and yesterday. Yesterday was the Cisplatin (4 liters of fluid, 2 straight to the abdomen) which is the booger-bear treatment that seems to bring me down the most. It is also the one that leaves me looking like a pregnant cockroach for several days. But this time all the fluid is coming out fast and furious! Niagara Falls has got nothing on Kathi Hickerson!! Depends have become my best friend today! (and desitin for the after effects!) who would have thunk it?? This is just not cool for a 53 year old or as a friend of mine says 40-13 year old lady, who, believe it or not is somewhat modest. Lately modesty seems to be hiding behind the curtains or under the couch. Pooting is something I have avoided in my life, just not something I find pleasant to discuss or to do, unlike my children who in their younger days would hold contests! Don't mean to gross anyone out but if you have had teenagers (and especially boys) you have had farting contests. Anyway back to me, this fluid in my abdomen tends to change everything inside of me so "the winds" are involuntary and could be embarrassing if I'm not careful and squeezing when I can, but the squeezing brings on Niagara Falls so I can't win for losing! God has a strange sense of humor when it comes to teaching me humility!
I feel my fade coming on but I wanted to update everyone and let you know I'm getting there. Hurley is warming up the foot of my bed and I will crawl over Sampson to lay down for the rest of the day. Update you again when I can. God love you and hope for babbling brooks instead of waterfalls and quiet bowels!
Friday, August 13, 2010
1600!!!!!
My WBC counts last Friday were 700, remember, they need to be at least 1000 to go forward with chemo. Today they more than doubled to 1600!! WooHoo! BUT, my magnesium and potassium are low, so Dr. Stone said I would get an IV potassium and magnesium when I go to Little Rock on Monday. At least the chemo will not be delayed! Today was almost normal, I had lunch with 4 beautiful friends that I used to see every Wednesday morning for a networking group. It was wonderful to see them and play catch-up and lunch was a fresh fruit and steak salad. Fresh fruit and veggies!! I will never and I do mean never take fresh foods for granted ever again. When you're not allowed to have a particular food, the craving for it is almost unbearable. So everyone go out and enjoy a good salad with lots of fresh veggies and big whopping side of fresh fruit and let me know that you savored every bite. Wish me luck for Monday and say a prayer that next week won't be too rough on this weary body.
God Bless
My WBC counts last Friday were 700, remember, they need to be at least 1000 to go forward with chemo. Today they more than doubled to 1600!! WooHoo! BUT, my magnesium and potassium are low, so Dr. Stone said I would get an IV potassium and magnesium when I go to Little Rock on Monday. At least the chemo will not be delayed! Today was almost normal, I had lunch with 4 beautiful friends that I used to see every Wednesday morning for a networking group. It was wonderful to see them and play catch-up and lunch was a fresh fruit and steak salad. Fresh fruit and veggies!! I will never and I do mean never take fresh foods for granted ever again. When you're not allowed to have a particular food, the craving for it is almost unbearable. So everyone go out and enjoy a good salad with lots of fresh veggies and big whopping side of fresh fruit and let me know that you savored every bite. Wish me luck for Monday and say a prayer that next week won't be too rough on this weary body.
God Bless
Wednesday, August 11, 2010
Hump Days
Isn't it funny, or at least I think it is, that when you go through an unusual time in your life, the days of the week all seem to blend into one big blob of a day. I lose track of days of the week, and weekends are a blur, I just want to get through to the next chemo cycle. So, when I have a cognizant moment and realize that this is a Wednesday and it's hump day for so many working people out there, it seems a little strange. Happy Hump Day!!
I have been sleeping a lot lately, and a good friend told me my body is letting me know I need the sleep. I'm sure she has a point, but I feel like I'm sleeping my life away (isn't that a song?) , of course, low blood counts are a contributing factor. My blood counts last Friday were the lowest yet, so I have been sleeping, resting, trying to stay away from crowds, not eating fresh veggies or fruit or undercooked meats (no real threat there). I CAN taste things right now, which is a good thing! My doctor prescribed "Miles Miracle Mouthwash" to help with my mouth sores. Believe me, it sounds better than it tastes, but it has helped the raw areas of my mouth and the sensitive tongue thingy I keep getting. The mouthwash has lidocaine in it and I swish and swallow 4 times a day. With the lidocaine, I end up with a numb mouth, but only sometimes, kind of weird! Beats the heck out of mouth sores! I also have a sinus infection, so I'm taking antibiotics for that. On the whole, I actually feel pretty good this week and I'm praying my counts are up on Friday, so that I can do chemo on Monday. I'll let you know come Friday.
God Bless.
Isn't it funny, or at least I think it is, that when you go through an unusual time in your life, the days of the week all seem to blend into one big blob of a day. I lose track of days of the week, and weekends are a blur, I just want to get through to the next chemo cycle. So, when I have a cognizant moment and realize that this is a Wednesday and it's hump day for so many working people out there, it seems a little strange. Happy Hump Day!!
I have been sleeping a lot lately, and a good friend told me my body is letting me know I need the sleep. I'm sure she has a point, but I feel like I'm sleeping my life away (isn't that a song?) , of course, low blood counts are a contributing factor. My blood counts last Friday were the lowest yet, so I have been sleeping, resting, trying to stay away from crowds, not eating fresh veggies or fruit or undercooked meats (no real threat there). I CAN taste things right now, which is a good thing! My doctor prescribed "Miles Miracle Mouthwash" to help with my mouth sores. Believe me, it sounds better than it tastes, but it has helped the raw areas of my mouth and the sensitive tongue thingy I keep getting. The mouthwash has lidocaine in it and I swish and swallow 4 times a day. With the lidocaine, I end up with a numb mouth, but only sometimes, kind of weird! Beats the heck out of mouth sores! I also have a sinus infection, so I'm taking antibiotics for that. On the whole, I actually feel pretty good this week and I'm praying my counts are up on Friday, so that I can do chemo on Monday. I'll let you know come Friday.
God Bless.
Wednesday, August 4, 2010
Helllooooo!
I'm here!! WooHoo!! This has not been a picnic but I am rising out of the funk and moving, albeit slowly. My daughter bought a beautiful set of James Avery earrings for me to wear to celebrate my halfway point last Monday but they were a little too heavy for my weak little head so I will sport them today and celebrate a few days late.
My joints are still pretty sore,, heartburn and explosive belching running rampant, damn fuzzy mouth is a constant but my spirits are better and willpower to leave my pillow is great. So I am on the road to a better week. My next round of chemo is scheduled for the 16th and 17th of August, so I have a little while to bounce back and feel almost human. There is light at the end of this funky tunnel. One of the tests that is run monthly is a CA-125; cancer antigen-125, is a protein that is found at levels in most ovarian cancer cells that are elevated compared to normal cells. CA-125 is produced on the surface of cells and is released in the blood stream. A CA-125 test result of greater than 35 U/ml is generally accepted as being elevated.
Post hysterectomy my CA-125 was 79 U/ml, last month it was 39 U/ml, still elevated but coming down. My test a week ago was I beleive 21.9 U/ml. SO!!!! this funky, nasty, yucky stuff is working!! It better be, cuz it eats my lunch ( and my breakfast and my dinner and every snack in between!) I can't say that the positive results makes the side effects worth it, that's just too much of a stretch but it gives me a boost to keep plugging.
I talked with Ann, one of my supervisors in Baltimore yesterday and I told her that every time a plane flies over, my heart gets tugged on. Those of you flying, kiss the clouds for me and I'll be back in a couple of months! This phoenix will rise out of the ashes!! WOOHOO!!!!!!!!!!!!!! God Bless.
I'm here!! WooHoo!! This has not been a picnic but I am rising out of the funk and moving, albeit slowly. My daughter bought a beautiful set of James Avery earrings for me to wear to celebrate my halfway point last Monday but they were a little too heavy for my weak little head so I will sport them today and celebrate a few days late.
My joints are still pretty sore,, heartburn and explosive belching running rampant, damn fuzzy mouth is a constant but my spirits are better and willpower to leave my pillow is great. So I am on the road to a better week. My next round of chemo is scheduled for the 16th and 17th of August, so I have a little while to bounce back and feel almost human. There is light at the end of this funky tunnel. One of the tests that is run monthly is a CA-125; cancer antigen-125, is a protein that is found at levels in most ovarian cancer cells that are elevated compared to normal cells. CA-125 is produced on the surface of cells and is released in the blood stream. A CA-125 test result of greater than 35 U/ml is generally accepted as being elevated.
Post hysterectomy my CA-125 was 79 U/ml, last month it was 39 U/ml, still elevated but coming down. My test a week ago was I beleive 21.9 U/ml. SO!!!! this funky, nasty, yucky stuff is working!! It better be, cuz it eats my lunch ( and my breakfast and my dinner and every snack in between!) I can't say that the positive results makes the side effects worth it, that's just too much of a stretch but it gives me a boost to keep plugging.
I talked with Ann, one of my supervisors in Baltimore yesterday and I told her that every time a plane flies over, my heart gets tugged on. Those of you flying, kiss the clouds for me and I'll be back in a couple of months! This phoenix will rise out of the ashes!! WOOHOO!!!!!!!!!!!!!! God Bless.
Monday, August 2, 2010
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