After two weeks of phone calls, e-mails, help from my Dallas partners and from Karmanos to try to get a contact and appointment at MD Anderson to discuss their clinical trials, I finally received a call on Tuesday, March 24 that I had an appointment with the head of gastric oncology two days later, on Thursday, and to show up at 12:30. The first flight to Houston on Thursday would have arrived at the airport at 11:30 – a little too late for comfort to make it to the appointment. So, Alan and I had to fly in on Wednesday afternoon instead. We were told to plan to be there Friday as well for tests. The last minute call meant we had to book a flight the day before flying to Houston. When looking at the cost, which was outrageous, we made the executive decision to spend a little more than $100 each to upgrade to first class. This meant our tickets were refundable and we could change flights without paying the change fee and any additional costs of the flight. That turned out to be a smart decision.
From flights, we turned to booking a hotel for two nights. That was not so easy. The first place, with which my firm has a corporate rate, was fully booked. The next sold out as I was looking at it, as did the third. I finally got a room at the Royal Sonesta, and it was only one of a few rooms left. It was also a very nice hotel. I was surprised at the difficulty of finding a room and asked myself why was Houston so busy…it is not a major tourist destination, it is late March and just what is going on. Alan and I found out when we got to our hotel. Houston was the site of the Southern Regional Division games in the NCAA championship and the hotels were filled with fans and players. The Duke University team and coaches, in fact, stayed at our hotel, which we learned when we came down the elevator the first night and were herded to the side as the press, the coaches and the players, came into the hotel. That explained the sold out hotels. That also explained the mass of people in the lobby bar wearing Duke shirts. I think we were lucky to get a room at our hotel.
On Wednesday, I did yoga, picked up the CD at Karmanos with my scans and we flew to Houston. The next day, which was my birthday, I spent seven hours at MD Anderson, first meeting with Dr. E, a fellow working with Dr. A, who is the head of gastric oncology, then meeting with Dr. A, then having blood tests and a CT scan. It was a long day. In fact, we barely made it to the restaurant we had reserved for my birthday dinner, and did not have time to first stop at the hotel and put on nicer clothes. At the appointment, Dr. E. let me know that there were no immunotherapy trials open to me right now, but that a lot of trials are coming later this year. There was one trial for which I was potentially eligible, a Phase I, that involved two drugs intended to try to block the pathways to cancer cells – the blood pathway and the “hedgehog” pathway. They did not push it hard, but did test me for the protein that had to be present to be eligible. I have the protein. The overall approach at MD Anderson reminds me a bit of Karmanos. Dr. A works with a team and every member gave me a card with their direct phone line and a fax number. A patient advocate came to see me and handed me her card. There is a web portal (rather than direct e-mails) that a patient sets up and in which you can view your medical records, appointments and communicate with the team. While not as direct as Karmanos, where I e-mail Dr. P and his team directly, it is a nice feature. The medical center in which MD Anderson is located is the largest in the world, containing numerous hospitals and medical schools and research facilities. It is the DMC on steroids.
At that point, all of my tests were done, nothing was scheduled for Friday, and so we took advantage of the first class tickets and changed our Friday flight to a morning flight. That cost less than the change fee would have cost had we not bought first class tickets. The cost of this short trip was high. I told Alan that for the amount we spent for 1 1/2 days in Houston, we could have gone for a week to Paris. I am lucky we have the resources to explore these options. Most cancer patients do not, and treat at their closest local hospital. I am lucky to have friends who research clinical trials that are available. I am lucky to now be a patient at three top cancer centers in the country and to have Dr. P and his team and my friend Rena watching out for me at Karmanos.
On Saturday Dr P called me at home and we discussed the clinical trial, my options and his recommendations. He was not excited about the clinical trial, but neither was I. I did not sense from my meeting at MD Anderson that they were pushing it very hard. It is a Phase I, with no shown benefits and in which they are attempting to figure out correct dosage, and I could not even get into it for a month. After that call, I felt the best course was back to chemo, but now I have to decide between two chemos – one is the standard and one is a clinical trial at Karmanos using a new drug with taxil. I am deciding this week which way I will go. In the meantime, MD Anderson called and told me they recommend chemo as well. While they agreed I should do the chemo at Karmanos, they were ready to book me in Houston for my scans, rather than having the scans done here, on the basis that then they would know if the chemo was working and if not, get me into a trial fast. While I was polite about this, it makes absolutely no sense to be treated at Karmanos but fly to Houston for scans Karmanos can do, and I can easily send the records to MD Anderson each time I am scanned. Karmanos is a top cancer center and I was told it has the second most clinical trials, after MD Anderson, in the country. My doctor and his team are all really intelligent, have been very interested in my case, have treated me with top care, and have also encouraged to explore other options, without trying to “sell” me on not looking beyond what they offer. Once I get my schedule for the new chemo going and know how I react, I plan to finally set up the non-profit to raise money for GI cancer research. Dr. A told me he had been to Congress a couple of times lobbying for funds for GI cancer research and that thus far, no monies are provided by NIH for such research while it provides a lot of funds for other cancer research. GI cancer needs something like Komen Race For the Cure, which has raised awareness and a lot of money for breast cancer research. GI cancers need funds, awareness and support for research.
On Thursday, at the end of the over seven hour day we had spent at MD Anderson, Alan and I went to Masraff’s for a really nice dinner and a Happy Birthday desert that they gave me. It was a restaurant I found by looking at reviews on line and the reviews were right – the food and service were great. That dinner was the first celebration of my birthday, a birthday that my husband told me he originally was not sure I would make. I appreciated more than ever that I was there, healthy, strong, able to eat and drink anything, and celebrating another year. At dinner I brought up to Alan that he had seemed grumpy about being in Houston; his response, was that it was not coming to Houston that was the issue; it was his worry about me now that we have to start over again on making decisions on treatment. I should have known. I was glad I brought it up. On Saturday I celebrated with my kids who each gave me a thoughtful gift, but whose real gift has been having them around and the love and support they have given me.
It has been slightly over eleven months since my diagnosis. It feels like a lifetime. Every year I will celebrate life and love and health. I plan to be around for a lot more birthdays.