Thursday and Friday, July 24 & 25

Thursday was a slow news day. I felt as though a weight had been lifted off my shoulders and became more like myself again....What a free feeling! It's funny how the worry can settle in like a parasite. It snuggles deep in. It's still there, though less obvious, as you're distracting yourself with friends or dice or movies. Then, it rears up in the middle of the night and makes you go to your computer to do more research. For the first time in weeks, I did NOT wake in the middle of the night for a 3 hour or more stint, but slept through 'til 6am, Thursday morning. The worry parasite was almost excised by Alice's octreoscan news and I felt light and whole for most of the day. I did aerobics and got a bunch of small things taken care of on Thursday and felt darned good about it.
Friday came with only a couple of sleep interruptions, about 45 minutes long each, at 2:30 am and 5:00 am. I was able to shut my mind off to sleep, thank goodness! However, knowing that my oncology appointment was at 2:30pm, I decided to do a bit of research into the octreoscan as it pertains to my particular type of cancer. What I was seeing on Google was a bunch of conflicting information, but it started to dawn on me that octreoscans only pick up BATCHES of cancer cells that create tumors of a certain size. Goblet Cell Carcinoid cancer is a different breed, very rare, and does a 'salt and pepper' kind of sprinkling throughout one's tissue linings, making it hard to discern. I began to feel doubt creeping back in but resolved to remain positive.
When Jeff and I went to the oncologist, we found out that the octreoscan that I was counting on so much is, in fact, NOT a good indicator of what stage cancer I have. As I stated previously, I misunderstood the nurse when she called. The fact that the cancer didn't show up in the scan doesn't necessarily mean that the oid is gone. We found out that the octreoscan will only pick up tumors that are larger than 0.5cm in size, so the salt and pepper kind of cancer cells that Goblet Cell Carcinoid cancer is made up of wouldn't show up on this scan. However, it IS good news in that it shows that there are no large tumors. Doesn't show whether anything has or has not metastisized, though, so we'll just have to wait to find out more after I get the right hemicolectomy and removal of my ovaries. They'll check the lymph nodes and those organs and will be able to see if anything has grown.
I try to be positive: I have an appointment at MD Anderson on Monday, what's there to whine about, right??? =) I keep telling myself this....
Here is part of a research project that might explain a bit more about octreoscans:
"In-pentetreotide (Octreoscan ® ) which is positive in 80–90% of the
patients with midgut endocrine tumours [19] . It eventually
unmasks the primary and its regional lymph node
metastases and additional tumour manifestations within
lung, skin, breast, brain and other locations. Limitation
of the technique is related to the size of the lesion ( > 0.5 cm)
and the receptor density."
You can read more at: http://www.carcinoid.org/medpro/docs/ConsensusStatementDxNETGItumors2004.pdf
However, DO be careful not to jump to conclusions based upon one very technically written report and ALWAYS rely on what your doctor tells you vs. what you see on Google or Yahoo search engines. I've noticed a million conflicting reports, many of them written from several different decades in our time. My own blog, here, is only meant to tell you what tests to expect, give you a timeline of my journey, and, therefore possibly your own, give you some helpful hints and maybe educate a little based upon what my docs tell me. ONLY your doctor will have the newest and latest information about your particular cancer so make sure that you have good communication set up with your doc or with an updated cancer treatment center resource that your doc might recommend.
After getting this news, I tried and failed to not be upset about it. I could actually FEEL the tension building in my chest and knew that I was due for a good cry. Haven't had one in awhile. After about 1.5 hours from the time we left doc Bala's office, I told Jeff to get ready and then let it fly. Boooooo-hooooo! I am SO disappointed!! Wahhhh! Jeff gives me hugs and about 3 minutes later, I feel better for having gotten it out. Still disappointed but getting better and I'm less full of tension. I DO have that MD Anderson appointment. So, I try to be grateful for that and let the rest goooooooooo.
Jeff suggested we distract ourselves, but I wasn't in the mood for crowds. I wasn't in the mood to sit around the house and watch more travel channel shows, either. What to do? Jeff came up with a great idea. We packed a cooler and some chairs and headed out to the Lago Vista Park. Dabbling our toes in the water, we watched a stellar sunset, doubly beautiful because of the reflections in the glittering waters of Travis. We had a nice talk and I felt the stress melting with the setting sun. There's nothing like nature to bring you back to your senses. After the sun went down completely, we went to our 2 story condo and sat on the rooftop deck, watching the stars and a gorgeous nighttime view of Lake Travis, Pace Bend Park, across the way, with the myriad house lights flickering on the hobbit hills near Lago Vista's golf course in the distance. It was hard to leave but sleep is important, so we head home and I pop in one of the new sleeping pills that doc. Bala prescribed. I'm happy to report that it worked like a charm! Sleep at last, sleep at last!!! Happy, happy me..... =)