I am totally confused and disappointed about where I am in my process. On Tuesday, I had an MRI, an annoying and frustrating process. In brief, for my 1:30 appointment, they wound up starting the MRI only at 3:00; if they have my phone to call to confirm the appointment, why can’t they call the same number to say “we are running late, so come late”!?
More importantly, Thursday I met with the radiation oncologist and then with the oncologist to go over the results of the MRI and saw the actual images.
We had been told from the start that there were only 2 tumors, both in Spain and in New York. Thursday, they said there is a third one that appeared on the MRI. They don’t know for sure if what they see is actually a tumor or some kind of reaction from the radiation.
Dr. Chi, the oncologist, said that most people with cancerous brain tumors have a recurrence – sometimes within a month or so, but could be up to 7 or more years. Antonio and I were both shocked by this news! We had been under the impression that after the radiation and chemo I would be done! And while Dr. Chi may not have said it using that language, he also had not said anything about high recurrence for most people. This was all new information for us. To be honest I felt betrayed in not having been given the full picture from the start.
Options that the team of doctors (Drs. Chi, Silverman and several neuro-surgeons in the absence of my doctor, Golfinos) discussed:
• Having a biopsy to confirm if the image is a tumor or just swelling. The plus to the biopsy is that they will know what is being treated and it opens more options to get it right. The downside is that this will entail going back to the hospital for surgery to open my skull again to access the tumor. And from what they have interpreted from the MRI there is a 90+% chance that the image is indeed a tumor, not an effect from radiation.
• Assuming no biopsy, they propose high-level radiation targeting the “tumor” and complementing it with a type of chemo called immunotherapy, which is experimental, meaning not yet approved by the FDA, but current trials are proving highly effective. This will mean going in for treatment every 2-3 weeks for up to a year, but there are few if any side-effects from this treatment.
As you may imagine, both Antonio and I were teary-eyed, sad and shocked. I told Dr. Chi that while I know that nothing is 100%, I also don’t want to live my life going from doctor to doctor, treatment to treatment. I’ve been through so much already and neither of these options really appeals to me, but I have to move forward and not pretend the tumor is not there.
I had lunch yesterday with some ex-UNCEF friends/colleagues: Sandra Haji- Ahmed who has been going through her own cancer treatment; Veronica Luard, Paulette Nichols and Nancy Raphael.
Nancy has a cousin who is a retired oncologist from Yale. She put me in touch with him and he also recommended getting a second opinion; he gave me the name of someone at Yale, but also said if I could find someone in NY at Sloan or Columbia it would be easier for me, so I will be looking for someone closer to home. Recommendations?
In the meantime, my energy levels have been up and down – first time they are down in a while, so taking more time again for rest, though last weekend, Antonio and I drove to see my family in Maryland. My sister came in for a few hours with my nephew, Andy and his wife and daughter. And we also spent the afternoon with Joan, Jayne, my Dad, Florence and later Georgi came by with Paul and Jonathan as well. Always good to be with family! And mid-week, we had lunch with Katia, Janet DeGrasse and Liselotte, other ex-UNICEF friends.
After getting my news, Miguel came by and underlined that there is nothing I need to be obsessive about to be back to where I was before all of this started. I can slow down, rest as much as I need, be frustrated, angry, sad… and not have to do anything to please anyone – my real friends will be with me no matter what or where I am in my process. And while I understand this rationally, my emotional side is up in arms! I hate the reality that I will need more treatment and that if I ever get back to “full energy” – IF – it may be a much longer process than I had thought it would be –likely well into 2017.
P.S. For now, please don’t panic – I have done that already! If I need your help, I promise to reach out.