Monday, July 25, 2011

When it rains, it pours!

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!!

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!!!

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!!!