These three words summarize the last month or so for us. First the frantic. On July 15th, I flew down to UCLA to conduct the preliminary tests for the upcoming clinical trial. The tests consisted of a full body CT, an EKG, lots of blood work, and a heart ultrasound. Pretty routine stuff. I got down there early on Friday morning, and by about 4:00 in the afternoon had completed all of my tests, not a really fun day, but in the grand scheme of things, not so bad. Since this day happen to coincide with "Carmeggedon" in LA, I decided to spend the night in Santa Monica. With one call, my pal William decided to meet me down in LA for a night of carousing, and needless to say we had a great time. Of course "Carmeggedon" turned out to be a big bunch of nothin, and I left LA the next afternoon. So what's the big deal you ask? Well the frantic part kicked in on Monday morning when I realized that nobody was willing to read me my CT scan results. Since this was a full body CT obviously it was pretty important. I had mistakenly thought that Dr. Colevas was my oncologist, and he of course would be willing and best able to interpret the results. Leaving many of the un-necessary details out, for whatever reason, he did not want to deliver me my results. Instead he left me waiting till Wednesday before I finally tracked HIM down, and then he didn't have any time to talk to me. He left me with some very ambiguous words (something you should never do) about the scan, and that sent me into a frenzy. I was able to track down a radiologist report from UCLA, and had them email it to me. Now I am not a trained oncologist, but having been through this for 5 years, I have learned a few things. One of which is to sort of read a radiologists report. So on Wednesday morning, as I sat by myself with Pokey by my side, I took a deep breath, and with a wet lick from Poke opened the radiologists report that was just emailed to me. It's hard to describe the feeling as you are about to learn your fate. Fortunately I was able to determine that things seemed pretty normal and the growth rate in the existing tumors was about what we had been seeing for the last couple of years. With a heavy sigh, and another slimy lick from the Poke.......I was able to finally call Jennie and give her the good news.
At this point, we decided that the best thing to do was to have Dr. Mann take a look at the scan, and confirm what we had read. He, of course agreed to help us, and I overnighted him a copy. Dr. Mann, one of the most brilliant thoracic surgeons in the country, figured out a way to take a quick look at my scan between surgeries, and deliver word to me that there was nothing alarming at all in the scan, and that when he had more time, he would give me a call to discuss. Eventually he called me on his way to the airport for a trip to China. He was just delightful, giddy, and so lighthearted. He told me again that he is really pleased about where we are at. We talked about using Cyberknife on one of the potentially troublesome nodules, he told me about some of the amazing things they are doing in drug research at UCSF, and encouraged me to meet with Dr. Jahan, the top lung cancer oncologist at UCSF in the near future. As I hung up the phone a sense of relief and calm overtook me. And then the emotional toll of the last week kicked in too. Thank god there are doctors like Dr. Mann, and thank god I found him. And now the part about fate.
As a result of my disconnect with Dr. Colevas, I now had to find a new oncologist. Enter Dr. Shane Dormady. I had met Dr. Dormady 4 years prior as he was a Fellow with Dr. Jacobs at Stanford. I remembered having an instant connection with him, and had been following his career path ever since. He is young, smart, and aggressive.....everything I want in a cancer doctor. Oh and you gotta like the Irish connection, right? It just so happens he also has a four year old little girl, lives in Mountain View, starting to see the bond? For the last four years he has been at El Camino Hospital in Mountain View but in a private oncology practice. El Camino Hospital just completed a state-of-the-art Cancer Center four years ago, and Dr. Dormady has been a part of it from the beginning. He is doing some really great things, and has been written about extensively, so I just had to meet him. To make a long story short, last Friday was my appointment. We bonded immediately. Call it two big Irishmen with a kindred spirit, or call it as I prefer.........FATE. After briefly reviewing my history, he quickly determined my aggressive approach, and commended me on my success so far. He then proceeded to tell exactly me how we were going to step this up a notch. But before he got into specifics, we had to put in some proper context. We began a very important conversation about the differences between academic cancer institutions, and private oncology practices. Private practices are not confined to the boundaries of an academic institution like Stanford, and is some ways, UCSF. While Stanford, MD Anderson, Sloan Kettering, Mass General are some of best cancer centers in the world, they specialize in treating the more popular cancers like breast, lung, colon, prostate, etc. But when it comes to rare cancers like mine, they are limited in what they are encouraged and willing to do. In other words, they can only be so aggressive. Deep down, this is something I have always known, and kind of explains why we really haven't done much with me with regards to systemic solutions (chemo). The institutions are great for surgery and also radiation oncology, and I have utilized these capabilities very effectively, but I really have not taken advantage of anything systemic.
So Dr. Dormady laid out the plan. We are going to biopsy some fresh tumor sample and run it through what is called the "Caris Target Now", a molecular profiling test. The test will determine what bio markers my specific tumor exhibits. These identifiers will then be run against the entire database of approved drugs (some 60,000) to determine what drugs might work on me, and almost more importantly what drugs might not work. It will also determine how to blend (cocktailing) certain drugs to get results. The "cocktail" approach is what has in many ways cured AIDS, so with logic applied, it should bode well for cancer. This test, for a variety of political reasons, would never have been suggested by a major cancer institution, but as you can clearly see, opens doors that could be invaluable. It's all part of the "personalized medicine" approach you may have been reading about in fighting cancer. And we are going to do it.......hallelujah!!
So next steps. I get to have a long needle CT guided into my lung to pull out some fresh tissue. BTW, I never knew that you could do a lung biopsy without being sliced open, but with El Camino being state of the art, they have according to Dormady, the "best" Interventional Radiologist in the country, who can pull tumor tissue from anywhere. Wow!! And we always knew that fresh tumor beats frozen any day of the week, right? Once the tissue is secured, then the test is run, and in about 3 weeks it comes up with the recommendations. Then we start experimenting. As I was leaving and in the embrace of Dr. Dormady, he whispered to me that I was going to be around for a looooong time. I felt like kissing him, but refrained. He concluded by telling me a story about a patient of his that was in his early 50's. He had the exact same cancer as me, adenocarcinoma of the salivary gland, with lung mets, and also bone mets. His cancer had behaved a little more aggressive than mine, but the closest thing yet that I have seen to anyone like me. Dr. Dormady told me that they did the exact same thing, the Target Now test, and found a "cocktail" that completely eliminated his tumors. I didn't even comment. I just started to cry. Fate, hope, back on track. No need for the clinical trial, shot in the dark approach. I also forgot to mention that I met with Dr. Gottschalk (Cyberknife doctor) and he agreed that we should go after the one potentially troublesome nodule with CK, so that will happen within the next month or so.
Now to the four part. The reason we were in California was that Miss Charlotte Hope May Dougherty turned Four on August 6th. We decided to have her party at Grams house in Stockton. Fortunately the Rodrigues girls were all in town for their annual summer vacation. Jennie had a great idea for a girls slumber party, so on Thursday night she decided to surprise Charlotte with a hotel suite on Union Square. What Charlotte didn't know was that Amelia and Olivia (twin 7 year olds, and essentially her sisters) were going to be there to surprise her and spend the night. The "girls" met us (William, myself, and Will's 16 year old son Henry) all for dinner at Capps Corner (a classic North Beach family Italian place), and we had a great time. The girls ran wild with spaghetti and meatballs dripping all over their faces. Saturday afternoon was Charlotte's party in Stockton, and my whole family came up for the day. Charlotte had a great time, and we had such a wonderful conclusion to our very stressful 4 previous weeks. We got home late last night, and had a car pick us up. As we pulled off the freeway on a beautiful evening, I looked at my two girls sound asleep with their faces illuminated by the bright moonlight. I felt a bond like I have never felt before. They have and will continue to sacrifice everything for me. And I'm so glad that I'm going to be around for a looooong time.
All our love,
Mike, Jen, Charlotte, and Poke