The beautiful quilt

I want to thank the wonderful lady who sent me the quilt. She did not sign her name, instead she just wrote a note saying that God had moved her to give it to me. So, in essence, it is from Jesus! It's an amazing quilt and so beautiful. Embroidered on various patches are inspirational scriptures. I love to cuddle up with blankets and this one inspires me as well as gives me comfort. I don't know who you are, but you are an angel. I hope you know how much I love the quilt, and how much I appreciate you! God bless you!

Scan results

I did get my PET/CT scan results back. It's taken me a while to decipher them, but I think I got it straight now. Overall, there is improvement. The previous areas are smaller or stable. But there are 3 new areas causing concern. Two are lymph nodes - one in my lower left lung and another near my liver. The third is in my pelvic bone on the left side. Dr. S wants me to go back to the radiation dr for possible treatment of the pelvic bone. And he wants me to go on Doxil, a new chemo, for the two new lymph nodes.
What's weird is this huge lump in my abdomen didn't show up at all! So apparently, it's not cancer. It still hurts like crazy, so I made an appointment with a gastroenterologist for Friday to get it figured out.
So, I feel like, it's not as bad as I was thinking. Nothing massive and overwhelming, just lingering and pesky!
Hopefully, the radiation and Doxil will knock it all out for good! I get the next few weeks off, then I go back on Sept. 14 to get started on the next regimen. Will post again when I know more!

Like the new layout?

I decided a needed a fresh new look!

I had my Day 2 treatment yesterday and I asked the nurses there to check my abdomen. They were able to feel the lump, too. So I decided it was time to go ahead with the scans. I called Dr. S and we got a full body PET scan scheduled for this Friday morning. Not sure when I'll get the results, but I plan to make an appointment with Dr. S next week to go over them. I already have an appt tomorrow morning. It's at questionable times like this that I prefer to see him directly rather than communicate through voicemail messages. That's just frustrating.

Right now my main symptoms are the upper abdominal pain, that feels like heartburn, a lump in my abdomen, and an ache in my left hip. The right hip had the spot of cancer in it, but now it's my left hip hurting. My nose is still having its same issues that its had all this time from the Avastin drug, burning and bleeding (nice, huh!). And my chest still aches. It's better if I don't have any constriction across my chest and upper tummy, so I wear loose clothes and no bra most of the time. I know, women's lib would be so proud of me!! Oh, and I have an appointment tomorrow afternoon (after my Dr. S appt) with an endocrinologist about my osteopenia.

Good news, my jaw is all healed and giving me no problems, thank you, Jesus! And my hair seems to have stopped falling out, thank you again, Jesus! Of course I did forget to wear my cold cap yesterday. John and I got caught up watching Don't Forget the Lyrics on the TV and we missed the time frame. Let me ask you what comes next in this song, "Wake me up before you go-go 'Cause I'm not plannin' on going solo. Wake me up before you go-go ___ ___ ___ ___" No googling allowed! Hint: it's the second verse of the chorus.

Girls are good. RR has begun taking martial arts this year and SHE LOVES IT! It is so her thing - action, drama, excitement - I see her as the next action movie star! Caroline will be taking jazz beginning in September, and it is SO her thing. She's always dancing around the house and this summer, she and I both were hooked on "So You Think You Can Dance." It's going to be amazing watching her develop as a dancer!

John is good, mom is good, Jan and her kids, all good. We're all just hanging in there, taking everything that's handed to us in stride and doing the best we can. Being grateful for our blessings when they happen, and taking on the challenges with God's hand to hold. Isn't that what we all do every day!

I appreciate all the quotes and inspirational messages I have received, the emails and the snail-mail. It means so much to me that so many people are sending positive thoughts my way and prayers up to heaven. Just the encouragement fills me with good energy to keep on going, enjoying my life and all its blessings.

It's a struggle sometimes not to think the worst and wonder what my outcome is going to be. But one night as I was talking with God if I should be preparing myself and my family for the worst, he spoke to me in a loud and clear voice, "Stop it! Don't entertain any negative thoughts, don't even put them out there. I will take care of you! You just have to have faith." Okay, then! It was humbling to realize that I was trying to do His job, predict the future. I need to stick with my own jobs - praying, believing, and taking care of myself! "Message received, Sir, loud and clear!"

The rollercoaster rolls on . . .

So my CA125 is going back up. From 50 at last check to 56 today. And I'm having horrible pain in my upper abdomen. Thought it was heartburn/indigestion, but OTC meds don't really help much. And I feel a lump/mass in the side of my abdomen, could be inflamed muscle, don't know. I called the dr office with this latest news and Beth advised me that Dr. S would probably want me to finish this last round of chemo, do some scans, and see where I stand. I only have 2 more infusions after today. Part of me wants to stop them now. It's likely that these drugs have stopped working, hence the rise in CA125. If that's the case, what's the point in continuing with them. I'm debating about not taking the last two and going ahead with the scans. But in reality, we're only talking 2 weeks difference. And as John said, the drugs are working some. My levels haven't skyrocketed, just bumped up a little. I suppose he's right.

The good news is my jaw issue has resolved itself. I went to see the oral surgeon and he removed the loose bone piece. Afterward, all better! He said he has seen this occurrence with normal people, maybe injuring the gum and bone with a tortilla chip or something hard and sharp. A portion of the bone dies and works its way out like a splinter. Once it's out, it's over. And that has been the case for me. Thank you, Lord, for the easy fix to this one!

The oral surgeon did mention that osteoporosis meds can cause this problem, jaw necrosis. He kept asking if I was on any of them, Fossamax, Zometa, etc. I told him no, just the chemo drugs. He couldn't find any correlation between the Avastin and jaw necrosis. I must've been mistaken in assuming Avastin was the culprit.

But the irony is this . . . Dr. S ordered a bone density scan just to see if my bones were having problems and we found that yes, I do have osteopenia, the stage just before osteoporosis. He and Beth discussed putting me on osteoporosis meds now, but with the jaw necrosis already having been an issue, the meds are out. So for now, I will go see an endocrinologist and start taking calcium and vit D.

So it sounds like I'm a train wreck! But I know it could be worse, and that's what I worry about. I'm like the train heading toward the wreck! Let's just hope I make it out alive!

In the meantime, my sister is going through a nasty divorce that came at her out of the blue. It's amazing to me how people can change so drastically, scary actually. I worry about her and she worries about me and neither one of us needs the stress of the other! And my poor mother . . . well, you can imagine! Her doctor took her off her maintenance drug to give her a break. Let's hope her cancer continues to remain stable.

I know life is a journey and that God has a plan to give us hope and a future. I'm putting my faith in Him and holding on through the bumps and turns. Every day holds a new turn and a new possibility. I'm just taking it one day at a time.

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!!

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!!!

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!!!