Now, my hair is falling out! I noticed in the shower yesterday morning, a few strands would come out when I pulled on it. I guess the chemo is overpowering the cold caps. I'll keep using them, of course, it can't hurt. But now I need to prepare myself to be bald again in the near future. Depressing.
I've been reading about my mouth issue and I found ONJ (osteonecrosis of the jaw). It's where the Avastin, which kills blood flow to the tumor, has also killed some blood flow to my jaw bone. This dead bone is working its way out, like a splinter. I've read a few other cases, and haven't found a treatment for it. I talked with Beth today about it and she was going to confer with Dr. S next week. He is out of town all this week. In the meantime, I'm going to be liberal with my pain meds and stick to soft foods. Heck, maybe I'll drop a few pounds in the end.
So, I'm feeling a little discouraged. With the CA 125 not dropping a lot, my toothache, and now my hair falling out . . . blah, just blah! I would love to hear some encouraging bible verses or quotes, anything inspirational! Or, anything you'd like to share. Thanks!!
Monday, July 25, 2011
Friday, July 22, 2011
Round 4 begins
So, let's see . . . what's been happening? After my last treatment of Round 3, I got a Neulasta shot instead of my regular Neupogen. It's supposed to do the same thing, boost my white blood cells, but it's longer acting. AND, it's twenty times worse!!! The bone pain, the aches, the flu feelings were almost unbearable. When I went for my appointment the next week, I told Beth I never wanted it again! The reason I got it instead of the Neupogen was because it can only be given when there are 14 days in between treatments, so they gave it to me on my off week. I won't be able to get it weekly, but I want to make sure they don't ruin my off week again with it!! Blech!!
The appointment went well. I saw Beth, the nurse practitioner, and she seemed happy with how everything was going. I mentioned my concern that my CA 125 had not dropped a huge amount, but she stayed positive, saying at least it dropped. I guess so.
Last Monday, I had another CA 125 drawn for the beginning of my Round 4 treatments. Granted, it had been less than 2 weeks, but the drop was only one point. Now I'm at 50. I'm really getting afraid that my body is getting used to the drugs and they are no longer effective. I can imagine the CA 125 hitting a plateau, or worse, a rise! Just have to wait and see. No use in worrying about what hasn't even happened yet.
One reason the CA 125 hasn't dropped is because it can be sensitive to inflammation in the body, unrelated to cancer. And I have had a toothache for 2 weeks now! It began one day suddenly during my Neulasta nightmare. At first, I thought it was part of the bone pain, but then it never got better so I went to the dentist. You're not gonna believe what was found . . . After examination, the dentist first suspected teeth grinding. Then I pointed out a specific area of my gum that was sensitive. He looked and said it was an ulcer. He asked if I would like to try a laser treatment that could help speed healing. I said, sure! After the laser, the skin became tightened and he noticed something mobile underneath my gum. Great! I asked the tech if they've ever heard of ovarian cancer recurring in the mouth. She just smiled and said no, but I wasn't going to be surprised given my history of bad luck! The dentist begain trying to pry out whatever it was, but I almost jumped out of the chair. So he put some anesthetic on the area and dug a little harder. After a few minutes, he sat back and gave me his diagnosis. It appeared that the chemo has weakened my bones and caused the ones in my gum to shift. Part of the bone is protruding a little and my tongue has been rubbing against it. Instead of an ulcer, it is actually where the bone has worn through (lovely, huh?!). He said it would not get better. He referred me to an oral surgeon who might possibly need to grind and reshape the bone in that area. In the meantime, he wanted to contact my oncologist to discuss what might have caused this, so that we could work on a plan to keep it from happening again. I'm thinking it's either the chemo or the beginning of osteoporosis. After all, I have been without any kind of hormones for over a year now and I haven't been taking supplements. I'll call Dr. S next week to talk with him, and my appointment with the oral surgeon is August 4. So this situation is to be continued . . . crazy stuff!!!
For the fun stuff, the girls are getting ready for the birthdays in August. We've got some big party planning to do, especially since Caroline is hitting double digits, 10!! She will officially be a pre-teen! RR is just as excited about hers, number 7. Where did my babies go?
Last weekend, we had a great time in Highlands for the Member Guest Tournament celebrations. We had an incredible dinner at the club - steak and lobster, yummy! Mingled and laughed with the amazing members, our extended family! All while dressed up in fancy clothes! It doesn't happen often, but when we do clean up, we make the most of it! John's assistant and his wife stayed with us and we really enjoyed their company all weekend. We even went on a double date with them the night before the dinner, eating at a tasty restaurant downtown. I actually ate so much last weekend, I could fast all week and balance out!
I did run another low-grade fever last Sunday. For some reason, I get those every so often. They only last about 24 hours and the fever never gets over 100, but I get so achy and sleepy. It's always a given that the day will be wasted, lying around and doing nothing. Those days have become part of my normal now, I hate to say.
But this weekend, I'm feeling good. I have treatment #2 of Round 4 on Monday, then we are hoping to go back up to the mountains with John. One of the members has graciously offered her house to us (can you believe how lucky we are??) and with school starting soon, we want to take advantage of these last few freedoms of summer.
I hope everyone reading has been enjoying their summer. Thanks so much for keeping up with me and for all the thoughts and prayers! I appreciate all of you so much!!!
The appointment went well. I saw Beth, the nurse practitioner, and she seemed happy with how everything was going. I mentioned my concern that my CA 125 had not dropped a huge amount, but she stayed positive, saying at least it dropped. I guess so.
Last Monday, I had another CA 125 drawn for the beginning of my Round 4 treatments. Granted, it had been less than 2 weeks, but the drop was only one point. Now I'm at 50. I'm really getting afraid that my body is getting used to the drugs and they are no longer effective. I can imagine the CA 125 hitting a plateau, or worse, a rise! Just have to wait and see. No use in worrying about what hasn't even happened yet.
One reason the CA 125 hasn't dropped is because it can be sensitive to inflammation in the body, unrelated to cancer. And I have had a toothache for 2 weeks now! It began one day suddenly during my Neulasta nightmare. At first, I thought it was part of the bone pain, but then it never got better so I went to the dentist. You're not gonna believe what was found . . . After examination, the dentist first suspected teeth grinding. Then I pointed out a specific area of my gum that was sensitive. He looked and said it was an ulcer. He asked if I would like to try a laser treatment that could help speed healing. I said, sure! After the laser, the skin became tightened and he noticed something mobile underneath my gum. Great! I asked the tech if they've ever heard of ovarian cancer recurring in the mouth. She just smiled and said no, but I wasn't going to be surprised given my history of bad luck! The dentist begain trying to pry out whatever it was, but I almost jumped out of the chair. So he put some anesthetic on the area and dug a little harder. After a few minutes, he sat back and gave me his diagnosis. It appeared that the chemo has weakened my bones and caused the ones in my gum to shift. Part of the bone is protruding a little and my tongue has been rubbing against it. Instead of an ulcer, it is actually where the bone has worn through (lovely, huh?!). He said it would not get better. He referred me to an oral surgeon who might possibly need to grind and reshape the bone in that area. In the meantime, he wanted to contact my oncologist to discuss what might have caused this, so that we could work on a plan to keep it from happening again. I'm thinking it's either the chemo or the beginning of osteoporosis. After all, I have been without any kind of hormones for over a year now and I haven't been taking supplements. I'll call Dr. S next week to talk with him, and my appointment with the oral surgeon is August 4. So this situation is to be continued . . . crazy stuff!!!
For the fun stuff, the girls are getting ready for the birthdays in August. We've got some big party planning to do, especially since Caroline is hitting double digits, 10!! She will officially be a pre-teen! RR is just as excited about hers, number 7. Where did my babies go?
Last weekend, we had a great time in Highlands for the Member Guest Tournament celebrations. We had an incredible dinner at the club - steak and lobster, yummy! Mingled and laughed with the amazing members, our extended family! All while dressed up in fancy clothes! It doesn't happen often, but when we do clean up, we make the most of it! John's assistant and his wife stayed with us and we really enjoyed their company all weekend. We even went on a double date with them the night before the dinner, eating at a tasty restaurant downtown. I actually ate so much last weekend, I could fast all week and balance out!
I did run another low-grade fever last Sunday. For some reason, I get those every so often. They only last about 24 hours and the fever never gets over 100, but I get so achy and sleepy. It's always a given that the day will be wasted, lying around and doing nothing. Those days have become part of my normal now, I hate to say.
But this weekend, I'm feeling good. I have treatment #2 of Round 4 on Monday, then we are hoping to go back up to the mountains with John. One of the members has graciously offered her house to us (can you believe how lucky we are??) and with school starting soon, we want to take advantage of these last few freedoms of summer.
I hope everyone reading has been enjoying their summer. Thanks so much for keeping up with me and for all the thoughts and prayers! I appreciate all of you so much!!!
Wednesday, July 6, 2011
Been a busy summer!
We got back in town yesterday morning, just in time for my treatment. Seems like we've been going all summer - the beach, then the mountains! It has been great and the kids can't complain about being bored! My treatment went just fine, it was the last day of treatment #4 so I get two weeks off before #5 starts. I did find out my CA125 is down again, not a lot, but some - it's now 51. I do worry that it's not a big drop. That maybe my body is becoming desensitized to the drugs and they are not having the same effect as in the beginning. I will see Dr. S on Monday and find out what he thinks. At least it is dropping and not rising!
I'm feeling good, still have the fatigue and shortness of breath and the cough! I'm starting back on my Advair inhaler, going to use it reguarly this time and hope it makes a difference. I just have to pace myself and accept that I can't do the same tings as before. I do miss the yardwork (good grief, did I just say that???) I actually enjoy pulling weeds, trimming, and keeping the yard tidy. But I have to say, my flowers are doing amazingly well without my help! I've even had some perennials pop up that I didn't even know were there!!
I want to take a few sentences and give a huge THANK YOU to our Cullasaja family. They have been an amazing support for us, more than they can ever know! We are so blessed to have them a part of our lives. John definitely has more than a job in NC, we have a group of angels there! Love love love and immense gratitude to all of you!!!
I'm feeling good, still have the fatigue and shortness of breath and the cough! I'm starting back on my Advair inhaler, going to use it reguarly this time and hope it makes a difference. I just have to pace myself and accept that I can't do the same tings as before. I do miss the yardwork (good grief, did I just say that???) I actually enjoy pulling weeds, trimming, and keeping the yard tidy. But I have to say, my flowers are doing amazingly well without my help! I've even had some perennials pop up that I didn't even know were there!!
I want to take a few sentences and give a huge THANK YOU to our Cullasaja family. They have been an amazing support for us, more than they can ever know! We are so blessed to have them a part of our lives. John definitely has more than a job in NC, we have a group of angels there! Love love love and immense gratitude to all of you!!!
Tuesday, June 21, 2011
Steroids and another sleepless night
Well, I did go to sleep around 1:00 with medication. But woke at 4am. Oh well, better 3 hours than nothing. My treatment yesterday was uneventful and quick, just the way I like them! I'm doing really well. Right now my biggest complaints are heartburn (could be caused by the tumor dying off), nose irritation (caused by the Avastin), headache from the burning sinuses, and my normal body aches and pains. It's all able to be managed with medication, so I'm good with it all!
The big news is . . . (drumroll) . . . my CA125 has dropped again. It is now 64.3 - that's about 30 more points from last time. If I keep this trend up, I should be down to normal by next month. YeeHaww!!! And I'm only halfway through with treatments. As much as I would love to be done already, I'm anxious to see how low I can go. I would love to see it get down to 6 or 7 which is what it was when I was cancer-free. Will keep praying and believing! God is looking out for me!
Mom is doing better. I don't think I mentioned that she got a blood clot in her chest, in her superior vena cava to be exact. That is the artery that carries blood to the heart. Pretty scary!! It was discovered when she had severe swelling in her face, neck, and arms. Then she started almost passing out. When she saw her dr, he immediately suspected a blood clot and sent her straight away to the hospital. The clot was caused by the port in her chest. She had to have it taken out and began blood thinner treatment. Her swelling is much better now after a couple of weeks, but she still doesn't feel great. That could be because Jan and I dragged her to the beach with us right after her port removal and probably wore her out! We really thought it would help her feelings. The trip had been planned for months and couldn't be postponed since they were all booked up. Plus, it was the only week I could go in between my chemo treatments. And it happened to be a weekend that Jan had Tyler and Ansley. Sooo, we went. It really was a great trip - wonderful weather, great condo, the kids had a blast in the ocean, and go-karting, and of course, the food was delicious. We were at Fort Walton Beach, just next to Destin. The gulf beaches are just beautiful! I'll try to post some pix soon.
Then, on Sunday we went down to visit our family in Milledgeville. Being the first Father's Day after Uncle Bob's death, it was bittersweet. But it was wonderful to see everybody in good times - swimming, horseshoes, cookout, yummy desserts, and just being together! We love you all, and miss you already!
John is back up to work already. It's his kids' golf camp. Caroline and Ansley are participating and Tyler and his friend Patrick have gone to help. Rachel Rose is too young so she had a sleepover with Aunt Jan, her "favorite person in the world" at the moment although John and I are just a "speck away"! That's what we get for letting Jan spoil her rotten!!! I'm planning to take her up this afternoon after my neupogen shot. We have been offered the use of a member's house! Can you believe how generous they are in Cullasaja?? It will be nice to have more room with the girls and their cousins. Not to mention the fancy schmancy accomodations!!!! Now who's being spoiled!
The big news is . . . (drumroll) . . . my CA125 has dropped again. It is now 64.3 - that's about 30 more points from last time. If I keep this trend up, I should be down to normal by next month. YeeHaww!!! And I'm only halfway through with treatments. As much as I would love to be done already, I'm anxious to see how low I can go. I would love to see it get down to 6 or 7 which is what it was when I was cancer-free. Will keep praying and believing! God is looking out for me!
Mom is doing better. I don't think I mentioned that she got a blood clot in her chest, in her superior vena cava to be exact. That is the artery that carries blood to the heart. Pretty scary!! It was discovered when she had severe swelling in her face, neck, and arms. Then she started almost passing out. When she saw her dr, he immediately suspected a blood clot and sent her straight away to the hospital. The clot was caused by the port in her chest. She had to have it taken out and began blood thinner treatment. Her swelling is much better now after a couple of weeks, but she still doesn't feel great. That could be because Jan and I dragged her to the beach with us right after her port removal and probably wore her out! We really thought it would help her feelings. The trip had been planned for months and couldn't be postponed since they were all booked up. Plus, it was the only week I could go in between my chemo treatments. And it happened to be a weekend that Jan had Tyler and Ansley. Sooo, we went. It really was a great trip - wonderful weather, great condo, the kids had a blast in the ocean, and go-karting, and of course, the food was delicious. We were at Fort Walton Beach, just next to Destin. The gulf beaches are just beautiful! I'll try to post some pix soon.
Then, on Sunday we went down to visit our family in Milledgeville. Being the first Father's Day after Uncle Bob's death, it was bittersweet. But it was wonderful to see everybody in good times - swimming, horseshoes, cookout, yummy desserts, and just being together! We love you all, and miss you already!
John is back up to work already. It's his kids' golf camp. Caroline and Ansley are participating and Tyler and his friend Patrick have gone to help. Rachel Rose is too young so she had a sleepover with Aunt Jan, her "favorite person in the world" at the moment although John and I are just a "speck away"! That's what we get for letting Jan spoil her rotten!!! I'm planning to take her up this afternoon after my neupogen shot. We have been offered the use of a member's house! Can you believe how generous they are in Cullasaja?? It will be nice to have more room with the girls and their cousins. Not to mention the fancy schmancy accomodations!!!! Now who's being spoiled!
Tuesday, May 31, 2011
Chemo #3, day 2 over and done with!
Today's treatment was a short one and not too bad. I had it on Tuesday because of the holiday yesterday. The girls had sleepovers last night and Caroline's sleepover became a "sleep-swap" . . . both girls are at our house tonight. John is heading back to work early in the am, so I'll be on my own tomorrow with all three . . . I may have to sneak some Benadryl in their toothpaste tonight so I'm not forced up at the crack of dawn! Shhh, don't tell anybody!
John has moved, errr, is moving into a new place for the season. It's a 2-bedroom mobile unit that's older and rustic, but really charming. I like it, and I'll like it even better once we add our own personal touches. Last weekend, me and the girls went up to clean and organize. And John is taking up a load of stuff tomorrow. We really could use a set of bunkbeds in the second bedroom because it's really small and cramped. Hopefully, we'll find something!
As for me, I'm feeling good. A little worn out from the busy weekend. But I was able to see a bunch of Cullasaja friends who I had not seen all year. We have such an incredible family up there. I am so thankful!
We are going to try to go back up this weekend and finish up the "cabin renewal"! Mom and Jan may come with us. Tyler and Ansley will be at their dad's for the weekend, so they won't be able to come. It's a new "living situation" for their family, one that's not the best. But they are adjusting, I think. Please keep Jan and the kids in your thoughts and prayers as they make this transition. They've been dealt an unfair hand and deserve much better.
Well, off to bed - hopefully the gaggle of girls has settled down by now!
John has moved, errr, is moving into a new place for the season. It's a 2-bedroom mobile unit that's older and rustic, but really charming. I like it, and I'll like it even better once we add our own personal touches. Last weekend, me and the girls went up to clean and organize. And John is taking up a load of stuff tomorrow. We really could use a set of bunkbeds in the second bedroom because it's really small and cramped. Hopefully, we'll find something!
As for me, I'm feeling good. A little worn out from the busy weekend. But I was able to see a bunch of Cullasaja friends who I had not seen all year. We have such an incredible family up there. I am so thankful!
We are going to try to go back up this weekend and finish up the "cabin renewal"! Mom and Jan may come with us. Tyler and Ansley will be at their dad's for the weekend, so they won't be able to come. It's a new "living situation" for their family, one that's not the best. But they are adjusting, I think. Please keep Jan and the kids in your thoughts and prayers as they make this transition. They've been dealt an unfair hand and deserve much better.
Well, off to bed - hopefully the gaggle of girls has settled down by now!
Monday, May 23, 2011
CA125 is down even more!
It's now at 95. I'm still waiting for 34, which is normal. But I'm celebrating the milestones. Starting at 353, I think 95 is great!!!
Today I began treatment series #3. After June 6th, I'll be halfway done. Hoping done is DONE this time and scans come back clean in September!
Today I began treatment series #3. After June 6th, I'll be halfway done. Hoping done is DONE this time and scans come back clean in September!
Wednesday, May 18, 2011
Week off
This is my week off chemo and I am feeling really great. Getting things done and feeling productive. We are actually having a yard sale this weekend to try and make some cash for our beach trip. Come one, come all!!! We'll start it on Thursday and go til Saturday. We don't have too many valuable items, but lots of cheap junk for those that love bargains!! We actually have a lot of ladies and girls clothes. I am finally giving up on my size 4's and 6's. After hanging in the closet for years waiting on me to lose weight, they are ready to move on to a needy anorexic. Actually, some of the dresses are really nice and a few never worn (wishful dreaming on my part, I guess!).
The girls are doing great, just wrapping up the last few days of school. Their last day is next Wednesday. We are hoping to go up for a Highlands visit Memorial Day weekend. John has a place he is renting for the summer. I'd like to get up there and add my personal touches to it! We are looking for a sleeper sofa and a set of bunk beds to use for the summer, or to buy cheap. Anyone have any leads, message me!
Well, got a busy day today so I better get started. Right after I enjoy this yummy cup of DD coffee. I have to say the customer service industry has redeemed itself to me in the past few days. After buying a coke at a Burger King last week, I drove up to the window counting my handful of change. I didn't want to use my debit card for $1.92 and I never have cash. The nice lady told me as I was counting, "Just give me what you got, honey!" So I handed her my dimes and pennies and drove away. How nice was that! And this morning, at the DD, I misunderstood the guy on the intercom and was short 10 cents. I tried to give him a dime, but he just waved me on with a smile. Good Morning and God Bless to all who have a kind and generous heart! My goal is to pay it forward always!
The girls are doing great, just wrapping up the last few days of school. Their last day is next Wednesday. We are hoping to go up for a Highlands visit Memorial Day weekend. John has a place he is renting for the summer. I'd like to get up there and add my personal touches to it! We are looking for a sleeper sofa and a set of bunk beds to use for the summer, or to buy cheap. Anyone have any leads, message me!
Well, got a busy day today so I better get started. Right after I enjoy this yummy cup of DD coffee. I have to say the customer service industry has redeemed itself to me in the past few days. After buying a coke at a Burger King last week, I drove up to the window counting my handful of change. I didn't want to use my debit card for $1.92 and I never have cash. The nice lady told me as I was counting, "Just give me what you got, honey!" So I handed her my dimes and pennies and drove away. How nice was that! And this morning, at the DD, I misunderstood the guy on the intercom and was short 10 cents. I tried to give him a dime, but he just waved me on with a smile. Good Morning and God Bless to all who have a kind and generous heart! My goal is to pay it forward always!
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