Its now been 5 1/2 weeks since the news, I have my port in ready for chemo, its Saturday, I am starting chemo next week, and I have no idea where I will be treated. This seems typical of my journey – first, I am diagnosed with the wrong cancer cell type, then there is a search for the origin of the cancer with the first thought being it is lung cancer and eventually they figure out its stomach cancer, and now I have appointments at two different cancer centers for chemo. How did this happen?
After meeting with Dr. P at Karmanos he and a lovely doctor, Lara, doing her fellowship at Sloan Kettering, worked to get me into Sloan to get another opinion and to explore being part of a clinical trial it was running that targets a protein in tumors called MET. In order to be part of this trial I have to be MET positive and HER2 negative. Karmanos is not running this particular trial, but Sloan is, and the Sloan GI cancer doctors are friends with Dr. P. It took a lot of persistence, constant texting and e-mailing by me to both Lara and Dr. P and calls to Sloan but I finally landed an appointment last week. The day after my port was put in, Alan and I flew to New York and that afternoon met with Dr. K at Sloan. I also very much liked Dr. K, who, by coincidence, is also a yogi, practicing for the last ten years, and who, like Dr. P, is not only a physician but a scientist. He knows and respects Dr. P, which does not surprise me. Dr. K confirms that the standard treatment for my cancer is the same as Karmanos, but if I am part of the clinical trial I may also get a drug that targets MET. I say “may” because the clinical trial is a double blind, Phase III, study where only 50% f the patients receive the actual drug and the others get a placebo, and neither the patient nor the doctor know who is getting what. That is a bummer but it is the scientific method we all remember from middle school. You need a control group and then the test group and the best way to insure accurate results is to pick them at random. But when you are facing stage IV cancer, you want certainty, or at least as much as you can have in these circumstances. This gives me no certainty other than I have a 50% chance of getting the drug. And treatment must take place at Sloan, so I could travel to New York every three weeks just to receive the same chemo I could get at Karmanos near home, plus a placebo. While I will not know, it certainly is not a happy scenario.
I have not been tested for MET. I have been tested for HER2 and I am negative for HER2. Why no test for MET? Because there is no drug on the market right now that targets MET – that is the purpose of the study – and thus there is no reason to test for MET. In order to get tested, I sign up for the clinical trial. While I can withdraw at any time, and I may not be eligible, the testing is the first step to see if I am eligible. Dr. K tells me that he believes the results will be in by the end of the next week and then I will face a decision. To do the trial or not to do the trial. I almost hope that I do not have to face that decision and that I am MET negative. Dr. K also says there is some belief that being MET positive makes the tumor a bit more aggressive although that is not yet certain. But that makes me want to avoid the decision even more by being MET negative.
We leave. Alan and I had decided to turn this visit into a nice weekend in New York and we do so. We walk the HIgh LIne and it is amazing how that has spurred residential development in what was a grungy warehouse area, we have a lovely lunch in the West Village, we return to our hotel, have dinner at a northern Italian restaurant, bond 45, near the theatre district and then see Kinky Boots, which was really a lot of fun, because my cousin Anthony was able to get us house seats. The next morning we have great bagels and walk to Central Park before going to the airport to catch our flight home. .
We return home to wait. In the meantime, Alan and I meet with Dr. P to consult with him on his thoughts on the trial. He knows I want to hear his opinions and he clearly knows all about it. He tells me that if I am MET positive he is “moderate to strong” or perhaps “moderately strong to strong” that I should participate in the trial. That pretty much confirms where I was headed – to do the trial if I am MET positive even though it means travelling to New York every three weeks for 10 courses of treatment. While we wait to hear the results, my chemo at Karmanos is scheduled for this coming week on Wednesday. If I do the trial at Sloan Kettering that will be cancelled. We also schedule “chemo class” on Monday. I will go to that no matter – its intended to educate you about chemo and what it can do and how to care for yourself. Cannot hurt to do it.
Friday comes and no word from Dr. K’s office, so I swing into patient advocate mode. I text Lara and ask if she knows the results of the lab test. She tells me she is in Greece with her family but can find out on Monday. I call Dr. K’s office twice and on the second call, I am told by his nurse assistant that the lab results are not yet in, will not be in until next week, but in the meantime she is getting me scheduled for all of the baseline tests I must take on Thursday and for chemo on Friday. She says on Monday, I will hear from her on the times for these appointments. We will see. In the meantime, I have no idea if I will be in New York next week or in Detroit…and we have made no travel arrangements yet. Hate to see what the plane fares will be given the last-minute flights.
So I sit here today with no idea where I will be next week and with a schedule that is up in the air. All I know is that Monday afternoon I will be attending chemo class and Wednesday afternoon I have a client meeting for work. Other than that, I must be flexible. My big fear – what if I do not hear before Wednesday? What I do know is that dealing with this means being flexible, that my own schedule does not matter, that the schedule is constantly changing, and that I have to jump when I get the opportunity, and grab it. So I wait, and I wonder and I figure somewhere next week I will be having my first chemo treatment.
I think its time to buy some flowers, plant them and enjoy the present…..living in the present moment is a must and never has been more true.