More tests, and driving to San Francisco

Okay, it’s now Thursday evening. We are still driving on the way to our friends Ben and Katherine’s house outside of Berkeley. I think we’ve got about 2.5 hours of driving left, which will get us there in just under 12 hours, including a couple of pit stops.

I forgot to mention a couple of things in the last post…when talking to Dr. Low, he cleared up some misinformation that we had. When the retinal specialist first measured the tumor, all he told us was that it was 5mm, but he failed to mention what dimension that was. It turns out the tumor is 9.5mm in diameter, and 5mm thick. I also made it sound like Tuesday was a pretty lame day, but that’s the night that C&S threw me the “Surprise! Jeremy has cancer!” party. So that was a really fun night.

So Wednesday morning my mom met me to get the EKG at my primary care physician’s office. I told Dr. Zwerin and his staff thank you for taking me seriously and for getting me in on such short notice to the retinal specialist. Also, one of Dr. Zwerin’s staff is Lori Haro’s (sorry, can’t remember your married last name) mother in law. Hi Lori! The EKG was normal. Then, I had to have more blood drawn because to get cleared for general anesthesia there were two other liver enzymes they wanted measured that weren’t part of the standard liver panel. That was another hour spent waiting at Sonora Quest.

By about noon Wednesday, the PET/CT still was not approved by insurance, so we went ahead and scheduled the MRI for that afternoon. That was much, much louder than I was expecting it to be. Luckily it was pretty short (~30 minutes). It’s easy to hold your body still for that long, but much more difficult to hold your eyeballs still. Since it was a brain and eye scan, I had to do my best. I also got that data on CD. Here’s one of the pictures.

We got home and started filling out the paperwork for the San Francisco doc’s office, as they wanted it ASAP. My mom and Angel ran to Walgreens to pick up some extra sensitive dental care products (thanks to Patti for the suggestions!) while I ran to Kinkos to fax the paperwork. While trying to get that done I had a crazy flurry of phone calls in about a 10 minute span at about 5:15pm.

1. Maria from Dr. Low’s office saying the PET/CT had been approved after a call from Dr. Low to the insurance company’s physician. I had to tell them that the timing probably wouldn’t work out because in order to drive to SanFran in time to make our Friday morning appointment, we’d have to leave Phoenix by 9am Thursday at the latest. Maria said she’d try to find out if I’d be able to get the scan done in California.

2. Dr. Low himself called to say that the MRI results confirmed what we had hoped…nothing in the brain (yay!!). The optic nerve hadn’t been compromised. The MRI confirmed the diagnosis of a choroidal melanoma that was causing retinal detachment. I still don’t have an answer as to how close the tumor is to the optic nerve. This is important because the likelihood of retaining vision after radiation is inversely proportional to the distance between the tumor and the optic nerve.

3. Maria again, calling to say that the SimonMed staff was willing to come in super early to get my scan started so that we could still be on the road by 9:00am.

4. SimonMed staff confirming that I could check in at 6:45am.

That was a stressful little burst of activity. You can’t eat too many carbs the night before a PET scan, so we went out for a steak, lobster and steamed broccoli dinner. Then we packed our clothes, snacks, and Duke’s stuff for the road trip.

Thursday morning , we woke up early. Angel dropped me off at the imaging place at about 6:30, then went home to pack the car and get the dog. When we were sitting in the parking lot for a minute we saw an old guy wheel in a small, heavy box marked with a radioactive label, which I knew was for me. I think the box was encased in lead, because he had a hard time getting it up the stairs. I got signed in and went in the back for a nice injection of radioactive material. FDG, fludeoxyglucose, is basically a glucose molecule modified to have a radioactive fluorine atom on it in place of one of the hydroxyl groups. I got the injection, then had to lay in a recliner in a pitch black room for an hour to let it disperse throughout my body. I got a decent little nap during this time.

Laying in the PET scanner was much more peaceful than the MRI, because it was quiet, but I’d hate to be any large than I am and have to go in there. Both my shoulders and my elbows scraped the walls of the tunnel as I slid back and forth through it. I couldn’t fall asleep in there because it was too uncomfortable.

I got that data on disc, then Angel picked me up and we hit the road. That pretty much brings me up to date on the blog.

So, what’s going to happen in San Francisco. This is where the perfect timing that I mentioned before comes into play. It’s looking like my treatment is going to be proton beam radiation, rather than the standard plaque radiation. Plaque radiation is where they sew a little shield onto the back of my eyeball and tuck some little seeds of radioactive material into the pocket. The shield is meant to protect surrounding healthy tissue from the radiation. Proton beam radiation is a more sophisticated technology, where a beam of energized protons is basically shot through the front of my eye and is targeted to the tumor. This can be focused very precisely, and the beam of protons has very little sideways scatter. This is becoming a more common treatment for cancers where nearby tissue is very delicate, for example the eyeball.

The main drawback with proton beam therapy is the expense. The proton accelerator itself costs about $150 million. So, there are only 6 of them in the US right now. One is at UC Davis in Davis, California. Dr. Char, who is based in San Francisco, has access to this equipment for his patients for one week, every six weeks. His next week on is September 27^th – October 1^st. Prior to radiation there is a surgery that needs to be scheduled, which he only does on Mondays, leaving September 20^th as the only option. Prior to surgery, an office visit is needed where Dr. Char will review all of my results, dilate my pupils and take a look at my tumor himself. He only does these appointments on Tuesdays and Fridays, leaving September 17^th as the only option. So as I mentioned, if this had to happen, the timing couldn’t have been better.

The surgery on Monday is going to entail sewing some small metal rings to my eyeball, I assume to help guide their aim of the radiation beam. I’m doubtful that they’ll be willing to do it, but I’m going to ask if they can take some pictures of the surgery so I can post some of those as well.

Peace out everyone, I’ll update more later on.