Wednesday, June 22, 2011

The Next Best Thing to NED

Laurie and I joked about this response from the Onc while reviewing how we would react to the PET results. What if he says, "The results are inconclusive". That's rich.
Although the radiologist indicated a very small uptake in one of my abdominal nodes, it is currently too small to biopsy and could be a false positive on the PET.
Overall, the sites of enlargement from my Spring scans have reduced in size which is a great sign.

So, where does this leave our hero?

They scheduled yet another CT scan for late August and we will go from there. The Onc said that he would have expected to see more site involvement if I was truly relapsed and that we just need to take a "wait and see" attitude for now.
I believe the kids call this, "dodging a bullet."

Tuesday, June 21, 2011


I learned last week that the PET scan is actually two scans in one tube. The process involves yet another CT scan and the PET portion is attached to the CT; extending the tube about 36". In preparation, I was instructed to follow a strict protein diet 24 hrs before the scan. Those of you who have been following my Primal exploits will understand that this was a breeze. Additionally, I was only allowed water 6 hrs prior to the scan.
The PET scan involves starving the body of sugar (glucose). They introduce a radioactive, fluorescent glucose solution which any highly active cancer cells immediately draw on for fuel. This consolidation of glucose is then caught with the PET scan using 3D triangulation to determine if you have relapsed.
I arrived at the LHCP with a couple of books, a mix CD with several cuts from the Beach Boys "Pet Sounds"(see previous post) and a few CDs just in case the mix disc wouldn't play. I was escorted to a private waiting room(see image) where Todd, my concierge, explained absolutely everything to me. He wears a radiation ring and a radiation badge that is sent in every month in order to track the amounts of radiation to which he is exposed. This tracks lifetime accumulations and at some level, you may need to find another line of work but so far, his levels are negligible thanks to the protocols they follow. Since this is also a CT scan, he had me drink an alternative to the BS solution I have blogged about previously. This step was much less involved than the normal consumption expectations and he started an IV line that would usher in saline, the radioactive glucose and the contrast solution. Todd also made me aware that during the scan they would play any of my CDs or they had access to satellite radio. He was a DJ while in college in Iowa and suggested the station FirstWave. Recommendations of books and music are always a welcome surprise and keep me out of my comfort zone.
Todd also brought in a small lead toolbox containing the glucose. The actual syringe is housed within a thick, tungsten cylinder with the plunger sticking out one side and the IV connection on the other. Todd explained that this cylinder is very difficult to construct due to the material properties of tungsten. This is Iron Man territory.

Todd tested my glucose level (78...ahem, thank you Primal) and injected the glucose. Now I wait for 90 minutes for the glucose to properly steep. Todd offered me a selection of movies, TV, music or a laptop. Laptop? 90 minutes to browse the Web was an ideal way to dwindle away the time.
What seemed like moments later, I was escorted to the scanner (see photo) and asked to relieve myself of any extraneous radioactive glucose (to pee). I then removed all my metal and climbed into the scanner. BTW, this is only one of four in Michigan plus another 2 portable machines. Apparently there were more portable companies traveling to rural areas of Michigan but their business models collapsed with the ridiculous price of fuel so only two portable PET machines survive.

They had me hold my arms above my head the whole scan which didn't bode well for the shoulder but I survived. They then added contrast to the IV and that old familiar metallic heat spread through my chest, neck and face. As I entered the tube, FirstWave thumped out the Clash's "I Fought the Law". The scan took about 20 minutes and as I exited the tube the Pretenders "Don't Get me Wrong" faded from the speakers. I was led back to the room to collect my things and was greeted with a hospitality cart filled with everything I don't eat (see waiting room photo). Damn you Primal.

Results should be ready on Weds during my Noon appt with the Onc. This is a big one.

Thursday, June 9, 2011

Three Yawps for Science

After visiting with the Onc last week, he felt NO external issues (looking for swollen nodes in all the typical locations, even in my guts) and said it would be OK to bump up the CT Scan if I wanted to as the changes would be as apparent now as they would be in 3 weeks.
As we exited, the receptionist noted my new insurance carrier and that we most likely would be able to scan at LHCP as opposed to my normal routine at Spectrum across the street. She asked if I could come back down in a few hours due to an opening at 1pm. I agreed to the appointment in order to get the results sooner. I had to immediately drink a bottle of the much blogged Barium Sulfate and take a bottle home to consume an hour before the scan. I came back downtown and was out of there within 15mins. Multiple jabs were not required as my veins acquiesced but the IV contrast was much warmer this time around. A polite "good luck" from the tech and I was on my way.
I called the Onc on Tuesday to see if they had results yet and didn't hear back. Wednesday morning I checked my voicemail and the Onc had called late to say we should, "catch up tomorrow". The last time I rec'd a call from the Onc he had nothing but good news so a mysterious lack of info sent a shock wave through me.
I had a PT appointment for my lingering shoulder pain so the whole drive was nauseating while Diane Rehm's firm, quivering reparte tried to distract me. I felt like I was floating in a quiet, thick, "what the hell" miasma.
After arriving back home, I called the Onc's office and was told someone would get back to me right away. Laur came in for some lunch and asked if I had heard anything and I relayed the Onc's message from last night. She turned a little pale and had to sit down. As we were discussing all the potential scenarios, the phone rang and the callerID listed, "CANCER AN". I answered with confidence and a nurse explained that there was "minimal enlargement indicated in the scan" they would like to schedule a PET Scan.
This should be a positive next step as the CT Scans are not able to determine if the enlargement is due to relapse or just normal fluctuation. Keep in mind that in 2005, I had the whole lymph node chain removed from the left side of my neck after an inconclusive needle biopsy found unusual cells; forensics proved the nodes to be benign. The PET will actually highlight overly active cells (cancer cells) in my body using a fluorescent glucose mixture. If it turns out that there are dark spots in some of the lymph nodes, then I suspect that we successfully caught the relapse early and start a plan of attack. If there are no spots, then we might conclude that the enlarged nodes are nothing more than my "cured" body back to normal function.
Hopefully the new insurance company will see the logic in this step and agree to pay for the scan.
Should have the scheduled scan date this week. It takes 3-4 weeks to get a scan appointment.