Saturday, August 28, 2010

Nashville with the family

In late August we decided to take a family trip to Nashville. We figured it would be the last time we could all go as a family until next summer. We left Friday night right after Cody get off work and drove almost to St Louis. We stayed the night in a hotel and the next morning drove the rest of the way to Nashville. On our way we decided to stop in St Louis and visit the Arch. The kids thought it was pretty cool to be able to go that high and look out the little windows. Mama, on the other hand, would have preferred staying on the ground!


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Kyler and Mama outside the Arch.


Ella and Mama on the way up the Arch

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Ella looks like she is getting ready to jump out of the Arch!


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Posing for Mama to take some pictures!

Wednesday, August 25, 2010

Family Trip Friday we are leaving for Nashville. We are going to take the kiddos this time and drive. K starts Preschool after Labor Day and they will both be attending Mom's Day Out at our church, so this is the last time that we can go as a family without them missing school. The hard part is my husband missing work. With his previous job, they were actually wonderful about my Drs appts, his new job has not been as great. But, he was approved for this little trip so we'll see how this goes.

I have appts on Monday morning, but should be done by 1pm so after that we are going to head down to Chattanooga so that we can go to the Aquarium the next day. Yes, the same Aquarium we went to last time. Yes, it's that awesome!! Here is the website, but it doesn't do it justice! I even enjoyed it, so you know the kiddos did!

I don't really expect anything to change at the appts. I don't even see the Dr, I see a Nurse Practitioner. I am basically driving 12 hours to get more meds. A little annoying, but whatever. I guess you do what you have to do for the good stuff:)

Saturday, August 14, 2010

Pathology Results

The pathology results came in last week and mass came back as some sort of inflammation. Oddly enough, nobody really knows what it is! It is an inflammation in my fat. I guess it's a good thing that I don't have a ton of it!

Last week, before the path report came back my oncologist wanted to take me off the trial until the results came in. I can see his side, sort of. He was thinking in the frame of mind that these masses are melanoma. And honestly, if my derm here wouldn't have already biopsied one and I already knew they were not cancer, I would have agreed. Why stay on something that isn't working anymore when I could be preparing for the next trial?

However, I knew these were not cancer. I wasn't worried. So when my nurse told me that my Dr would not refill my prescription until the results were in I was pissed! Here are SEVERAL reasons why...
1. Stopping and starting these meds are an excellent to build up resistance
2. I had enough meds on hand to get me to Friday, which was when the path reports would have been in, however I wouldn't have been able to see a Dr until Monday so that means Sat and Sun without meds
3. When the tests come back as inflammation I would have to purchase MORE plane tickets to head to Nashville to get the meds. Hello...EXPENSIVE!!

So after some crying and whining, my nurse emailed the head oncologist in charge of the trial, he said, under no circumstances let her stop the meds! Problem solved. Yippee!

My prescription was filled. No return trip the following week. And my mass came back as inflammation. A good visit over all:)

As for the PET, some of the masses lit up, some did not. The tricky part is being able to differientiate between cancer and the fat masses. There is no sure fire way of knowing what is what (Other than taking a biopsy of every single one-which is NOT an option!). So, I guess for now, we just go with my gut. We'll see what happens with that:)

As for side effects, well, the masses obviously, joint pain, sun sensitivity (majorly) and some fatigue. But, other than that I truly am doing quite well. I feel so blessed. No, really, I do. I have been through SOOOOO much worse. I am grateful to be on a chemo med that is presenting few side effects and is working so well. 

Life is good.

Tuesday, August 3, 2010

CT turned into a PET

As you know I left for Vanderbilt on Sunday night.

Monday I headed to the Cancer Center for premed labs (which my nurse forgot to schedule), CT scan, EKG, appt with Dr, and post med labs.

They were able to work me in for labs after I waited for about an hour. After those were done I headed for my CT. I had my favorite tech so that was nice to see her again! After my CT I headed to my EKG, after waiting for about 45 minutes I finally asked what the deal was, apparently the tech had went to lunch and nobody told me. Lovely! So left and went to my Dr appt.

My weight has stayed the same, which is good, vitals were great, white blood cells were NORMAL!!!, platelets were NORMAL!! red blood cells were a bit low, but nothing to worry about, and my cholesterol was a bit high, odd for me, but we looked at the past tests and ever since I started the RO5 it has been high so that is obviously a side effect of the meds.

My Dr came in and we discussed the CT scan. He said he looked at the tumors we had been watching and saw a little bit of shrinkage, but not much. This is ok. This means one of two things, either the tumors are DEAD, or the RO5 has shrunk it as much as it can and right now it is simply holding it off. Either one I am ok with.

One thing the Dr and I discussed were all the nodules that were on the CT scan. At the time of my appt a radiologist had not read my scan. Just my Dr. Even though I feel my Dr is a brilliant man, he did not have years of training reading scans. He did not feel comfortable being able to distinguish between the fat nodules (lipomas) that the meds are causing ad the cancer. So, he just measured the two tumors we have been watching all along and called it good.

Here is where it gets tricky. If a radiologist reads the scan and can't tell the difference between the nodules and cancer, I will be taken off the study. Plain and simple. After some discussion we decided that a PET was needed. On a PET scan cancer will actually light up so it is easier to tell if it is cancer or not.

I think my nurse is starting to understand my predictament with the whole traveling thing and as we stepped out of the room she was already calling to schedule a PET for me. Finally, being a pushy bitch is paying off!!! :)

So, a PET was scheduled for the following day. My flight was changed BACK to my original flight and all was good.

On Tuesday I had my derm appt. I am really pleased with my derm here in Nashville. He is very knowledgeable and very personable. His fellow came in first and examined me. I was able to show him the nodules. I am currently up to 24 nodules. They are under the skin but they present a red discoloration on top of the skin. Some hurt, some do not. Some are large, some are tiny. Some are actually making bruises. Most tend to be in my hip and thigh area. And those are actually the ones that are bruising. I told my friend I probably should not wear a bathing suit. It looks like someone has been beating me!

After I showed the fellow the nodules my derm came in. I explained that they come and go and then I showed him a few. He actually did not think they were lipomas. He did NOT think they were cancer. He felt they were an inflammation of some type, but I don't actually remember his exact words.

I explained that I was having a PET done because the radiologist couldn't tell the difference between the nodules and cancer. He explained that sometimes inflammation will light up on a PET. Which totally freaked me out! So, just to be safe he decided to take out one of the nodules and send it to pathology. He also took off a mole that had been worrying me. It had been changing in color and shape. Probably due to the meds, but like he said, I have enough to worry about!

When the nodule was removed there was absolutely NO sign of discoloration. It was simply all fat. He feels that the RO5 is causing an inflammation in my blood vessels. In another situation he would say stop what is causing the inflammation. In my case that really isn't an option, so for now I just deal with it. I'm ok with that. I have really and truly been through worse. What's a little inflammation!

We should have the results of the PET scan tomorrow morning. My oncologist will take a quick read of it. If he feels the cancer is being kept at bay, the nurse will fax in the order for my RO5 and I can head out.

I'm honestly not worried. I know the meds are working. What I am worried about now is the cost. Since my husband switched jobs that means we have also switched insurance. Which means new deductible. Which means out of pocket. Again. I am sure his old insurance company did a little happy dance when we left. However, I did not waste any time breaking in his new insurance company, did I!!

 Some day I will explain how this trial works and what we are expected to pay and what the trial covers. But, for now I am going to bed. Thank you all for you prayers!