Hello everyone—
Just a quick update on all the confusion: We appealed my PET scan issue to Richard’s employer (our Aetna plan through his employer), and they also denied us. At this point we are looking for legal representation. It is just not right that our own health insurance is not giving me the care that I need, and I feel I need to fight this not just for me but for patients that come after me. If anyone has a good referral for this kind of legal representation, we’re open.

I’m feeling fine 2/3 way through round seven of Gemzar. We know it is working, as after the review with the other nurse practitioner, when they told me everything had “stayed the same,” a few days later I spoke with my nurse practitioner and she told me that in actuality the lesions in my lungs had shrunk! Hallelujah! So my doctor and I are comfortable staying on Gemzar for a few more rounds and then we will have to find a way to pay for a PET scan.

Speaking of which, I really don't know how to thank the anonymous person that left the beautiful card and gift for me. It was one of the kindest things anyone has done and I know your reward will be great in heaven! I only wish I knew who you were so I could thank you in person!!

I am so blessed to have all of you reading this blog supporting me with your thoughts and prayers, because you are getting me through this—and I plan to kick this thing!!

Thank you all so much!

Well, it sure did take a while to get the correct information, but it looks like the CT scan showed basically no change from my last scan in October. The information I was given on Friday was all incorrect, because the hospital based the comparison report on an old scan from 2006! I cannot tell you the emotional ups and downs they have put me through since Friday. I’m obviously condensing all that has happened, or you’d have a book to read right now. At one point yesterday, I was told everything had grown and we’d have to switch chemo drugs (and that I’d lose my hair again, etc.). Then as I was walking out of the office, the entire story changed when my doc called from his other office saying he had the actual report in his hands, nothing had changed and that we would be staying with Gemzar. Of course the really good news is always that there was no new growth. My concern now is that four months ago, you may remember the great news I had received was all based on a large reduction in cancerous activity, not size, so I am not shocked that the CT showed “basically no change.” I need a PET scan now more than ever to see what has happened with activity, so we will know how to proceed with treatments. We will have to find a way to pay for the PET until we can get Aetna to come around and pay up. I can’t tell you how much your prayers are helping me with support. Thank you so much!

Hello everyone—
Well, I had my CT scan on Thursday morning and Thursday afternoon Aetna called to say they denied my PET scans again. Needless to say, we are appealing again (this time directly with Richard’s employer who owns the group plan).
Yesterday a nurse practitioner (not my usual one) called from my oncologist’s office with the results, but she is not familiar with my case, so she was hesitant to answer my questions. It seems like mostly good news, but I won’t know everything until Monday, when my doc is back in the office. The best part is that the CT shows no new growth, and that many of the lesions in my lungs are shrinking. The not so great part is that it looks like the main mass grew a centimeter, and there is some more fluid in my lung. I’m not worried about the fluid too much, because fluid is a side effect of the Gemzar. I am confused about the growth in the main mass, though, and will have some questions for my doc on Monday. She couldn’t find any reference in the report to the two spots on my lungs that were being tracked before (the one had shrunk to the point where it was undetectable by PET or CT and the other was almost undetectable). I’m hoping that’s because they were undetectable, and not because it’s a different radiologist reading the scan, but again I should know more on Monday. I’m assuming I’ll be continuing with chemo, but until I talk with the doc nothing is for sure. Please do keep me in your prayers, and I will report back next week. Thanks so much for all your support!

Hi Everyone--
Well on Thursday I finished round 6 on Gemzar. Since I still have not been approved by Aetna for a PET scan, I am having a CT scan on Thursday. A CT will not really give us enough information, but it will give us size. We are hoping to hear of an approval from Aetna in time to get the scan changed to a PET this week. Either way, I will hopefully be having some news by either the end of this week or beginning of next. Please do keep me in your prayers, as it has been four months since my last scan, and we are hoping for more good news. This week is incredibly busy, as we are in tech week for our musical to open next week. Keeping busy is good. I hope to have good news to share with you soon! Thank you so much for all your thoughts, prayers and support.

Hello friends! It's been quite a while since my last blog. I have had my hands full with so much going on. Back in November I started having pain in my chest (in the place where my port used to be). They did an ultrasound, x-ray and bloodwork and came up with nothing. Finally they diagnosed the problem as Costochondritis, a condition where the cartilage around my sternum became inflamed and was rubbing against the bone. They said it was not uncommon for someone that had had radiation where I did. Unfortunately it took them 5 weeks to figure this out, and I was on Advil & other pain killers to get me through every day of it. They put me on Celebrex and it seems to be managing the pain, but the pain is still there. I also developed anemia (my hemoglobin went as low as 8.6, and my doc was pushing for a transfusion. I didn't want it, and took the Aranesp shot to boost my levels instead. It worked. I'm now back into the 10.7 range and holding (still low, but ok). Thursday will complete round 5 on Gemzar, and my doc would like to do another PET scan the following week, but now we have run into another issue. Aetna has decided they don't want to pay for my PET scans ($3300 each). It's interesting that they pay for PET scans on other types of cancer, but for some reason they consider PET scans to be "experimental" when it comes to my rare "thymic" cancer. We are already at the second-level appeal phase. Please keep us in your prayers, because I need these scans to make sure my treatments are still working and monitor my current situation. I have been feeling fine through the chemo, with minor side effects that haven't really hindered my lifestyle too much, so I'm very thankful to God for that. I'm hoping to get a PET scan soon and some more good news to go with it! I'll keep you posted...

Prayers answered

Hello everyone,
I can't tell you the great pleasure it gives me to share this news with you. I had my PET/CT scan this morning, and already by this afternoon my doctor's office called with miraculous news! My main tumor has shrunk in activity from 14.6 to a mere 2.8! The nodules on my lungs that they use to track progress have gone way down. In fact the one in the right upper lobe is COMPLETELY UNDETECTABLE by PET or by CT. The one on the lower left lobe is almost to the same point of being undetectable. All the nodules are shrinking in their activity and many in size too! Your prayers, love and support have all been the reason for this and I thank you and of course I thank God!
The plan now is to continue with this chemo drug (Gemzar). This week is my week off, and next week I will start round three. We will continue until we get into full remission, and I KNOW that we will get there! Thanks, everyone!!

Hello everyone. Well, Thursday I had the 3rd dose of Gemzar in the second round of this new chemo drug. Things have gone well. My hair is hanging in and I very minimal water retention. I've tolerated the drug well, so if it works I should be able to continue on with it as long as I need to. On Monday morning I will have a PET/CT scan to show what both the radiation over the summer and this chemo drug have done. I feel confident going into it, but of course I ask for your prayers as I await more news this week. I should know the results by Halloween or the day after, and will update again then. I thank you so much for all your love and support!