First, a special thanks to Chad and Stacey for throwing me a pretty awesome party the other night to wish me well. It’s pretty amazing how many people showed up, despite the fact that it was put together at the last minute. Thanks to everyone who was there, and to everyone who wanted to be there! TJ made me realize that in my previous blog posts I never mentioned how I was feeling physically. Good point, I’ve been feeling great, like nothing is wrong at all.
My last post updated through Sunday, but so much has happened since then. Right now it’s Thursday morning, and Angel and I are in the car driving to California, so I thought I’d work on some updates. Typing is going slow, because I’m trying to watch the road as well while Angel sleeps. Just kidding, she’s driving! Those who were at the party that Chad and Stacey threw for me the other night know why we’re heading to California already, but for the rest of you…here’s why!
Monday morning I had a chest x-ray, from two views. The girl had to re-do one of them because my lungs are longer than she thought they would be. I got the data on CD, but apparently they don’t just give you the images in any standard file format, so I haven’t seen them yet. From there we (Angel and my mom were with me J) went to the Sonora Quest lab to have some blood drawn for the liver panel, blood count, metabolic panel, etc. We had to wait at the lab for over an hour, and during that time I was on the phone a lot.
Luckily for me, I’ve worked closely with several well-respected and well-connected physicians for about the last 10 years, namely Richard Herman (neurologist), Jerry Targovnik (endocrinologist) and Laurence Miller (gastroenterologist). They have all been pretty concerned for me since I told them what was going on, and they’ve been very helpful in offering to get me in to a number of places that would offer great care. They also called in some favors from some of their friends. Also, our good high school friend Michelle Lai is a diagnostic radiologist at Barrow Neurological Institute, and she’s also been very helpful in giving me her opinions and putting me in touch with some of her friends.
I talked to Jerry Targovnik while we waited at the lab, who told me that he’d arranged for me to be seen at Southwest Hematology and Oncology. His close friend Jeff Isaacs was out of town, but he arranged for his colleague Boo Ghee Low to see me that afternoon. I called his office and made an appointment for 3:15. Targovnik also told me that everyone he talked to thought I should get to San Francisco to be treated by a friend of a friend, Devron Char. I knew nothing about Dr. Char when I called his office, but it was sort of a cool feeling when his assistant Julie asked for my name and then said “Hi Jeremy, I’ve been waiting for your call. Let’s get you an appointment for Friday morning.” I didn’t yet realize how lucky I was that the timing of everything was working out this way.
After the phone calls were done Angel googled Devron Char and came up with this tidbit: “Dr. Devron H. Char is a pioneer in the diagnosis and treatment of patients with eyelid, conjunctivital, iris, retinal, choroidal, orbital tumors and patients with thyroid eye disease. He has been listed annually as one of the ‘best 400 doctors in the United States.’ Dr. Char has written over 300 medical articles and six books including the basic textbook on ocular oncology. He has served as an editor or reviewer on medical journals in basic cancer research, eye research and clinical eye care. Dr. Char is the founding director of the Ocular Oncology unit at the University of California, San Francisco, Medical Center.”
It was about this time that I started thinking about how fortunate I’ve been to have these connections. It almost seems unfair to the people who have to go through something like this without knowing anyone who can help. This thought has been continually popping into my head.
We made it to Dr. Low’s office for the afternoon appointment. His nurse told me that he had received the results from my chest x-ray, although she didn’t know what they showed. She did, however, give an interesting smirk that made us think she did know the results but didn’t have a very good poker face. We waited another 15 minutes or so with sweaty palms, awkward silence, and some nerves, wondering what the results would show, because at this point we had no idea whether the cancer had spread.
Dr. Low had obviously reviewed all of my info before coming in to talk to us, and he asked what all I knew. I told him that I knew I had a choroidal melanoma in my left eye. He started asking if I’ve recently starting having any pains in my chest or abdomen. My palms were sweating even more thinking about what the x-ray results would be. He finally said that the x-ray showed nothing abnormal in my chest (except some small benign granulomas on the bottom of one of my lungs). Seemed weird for him to ask me that when he knew I was waiting for those results. I guess some people are just oblivious. He also said he wanted me to get an MRI of the brain and a full body PET/CT scan, both of which needed pre-approval from my insurance, but he assured me that he would get them to approve both scans.
So, we went home to wait for more information.
Tuesday was pretty uneventful until the afternoon. Dr. DeSouza (the retinal guy) called to let me know that the liver panel came back with all of the enzymes in the normal range. I got the new patient paperwork from Dr. Char’s office, and was also told that I would need a few things in order to be approved for general anaesthetic. So, I got an EKG scheduled for the next morning at Dr. Zwerin’s office. And then at 5:00, Dr. Low’s office called and said that the MRI had been approved and would be scheduled for the next day, and the PET/CT was still pending approval. Apparently they were hesitant to approve such an expensive test without having pathology results. That, however, would entail a biopsy, and taking a biopsy of the inside edge of the back of an eyeball is something that doctors tend to avoid.
More in the next post…
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