I guess I should have thought more about it when my surgeon said that my path results were “unusual” and they had been sent to another lab for analysis. But I had had “unusual” results before and it was just a lab error, so I didn’t think much about it. When Colin and I arrived for my follow-up appointment, we all sat down, and he started in with “What the pathology here at Lahey showed was a rare cancer called angiosarcoma……..” I think I said something like “Well, I guess our summer is going to be a lot different than we had planned.” As I think back to that appointment, I cannot believe that I, no we, were able to just sit and listen to him and have a rational discussion about further treatment. But we did it. For the first time in my life, it really hit home that I could die early and not see my girls grow up. We were still waiting to hear the second opinion on the pathology from Dr. Fletcher at Dana Farber. As the appointment was winding up, we were in the process of exchanging phone numbers to hear the pathology results as soon as possible. Though, a "no" would have just put us in limbo until a third opinion could be found. At the last minute, the phone rang and it was the results, a yes. We then stopped to get appointments for MRI, Pet/CT, an appointment for a week later to see what the scans revealed, and I had orders for more blood work and a Chest X-ray.
We left Lahey in a fog. I got on the phone and called my folks before we were even out of the parking lot and then called Colin's Mom. We stopped for lunch, not so hungry, but for something to do. I had the Tom Yum soup. The hot spices were a wakeup call that we are here in the world and this was not a dream.
I had things to finish up in the office, it was hard to go in and not show anything. The first thing I did was sit down and Google angiosarcoma. This is so rare, that there aren't a lot of definitive studies. The first paper I read had a survival rate at 5 years of 20%. I was completely unable to absorb that, and then looked at the publication date, and it was 1992. Ancient history in cancer terms! Didn't have the time or the privacy to really do any further searching. One of my colleagues stopped by to chat before leaving the office. We had things to do so needed to plan for the following week. I started saying well, I will be out this day and then that day... He said what are you doing? Falling apart? And I said I guess that is how you put it.
Of course when I got home, our neighbor was mowing the lawn. More straight faces, decisions about who to tell and when.
I was able to get my sister on the phone. We had a long discussion about it, and she said she would tap her network at U. Mich. Hospital where she works. It is good to have connections to people in the healthcare field. Inevitably someone knows someone who knows someone. It also helps to have an MS in Biomedical Engineering, even if your thesis had more to do with control systems, signals and analysis than with biology.
As we were getting the kids in bed, my brother called from CA. I called him back a bit later. I could tell from his voice he was not expecting what I was about to say. He said our sister had called and had asked if he had spoken to me. When he said no, she just said well call her. Poor thing, he thought I was going to say we were expecting! Even though I never ever want to be pregnant again, I thought well too bad that is not it ;-).
Neither of us slept much that night.
