That Man was the only one who gave us the truth. We were so mad at him. What the hell was he even talking about the “quality of life?”
The other Team had already given us the diagnosis earlier in the day before we talked to That Man. The Team carefully explained what your body was doing and how they would “de-bulk” the mass growing in and around your spine. They told us about the “tentacles” growing toward your aorta. They told us if we didn’t do the surgery you might “lose function from the waste down”. They talked about the three other “grey spots” in your spine and how your body created these different cells that were like “seeds and now we are waiting for them to grow”
Then the Team talked about the surgery. It would most likely be a “24 hour surgery” where they would attempt to de-bulk from the back and front”. They would have to “flip” you so there would be “less a chance for a stroke or heart failure.” There is a “chance of blindness” because of the pressure, but that is low. They said the incision would “span almost the entire length of your back.” And….the mass would still be in the spine because they cannot remove the entire “mass entangled in from your nerves.” Your recovery would be based on how fast your body heals, of course. They mentioned you had a “body of a 40 year old man as opposed to a 65 year old” and you should be fine, at least in that way. Your treatment would be targeted radiation to prevent the further growth of the mass. This would be followed by rounds of aggressive chemotherapy and possible immunotherapy. After that, we would have to see…
One member of the Team looked directly at me and said, “Do you understand what he is saying?” I answered, very calmly, “I expected something like this, but not all of it.” She said,”to be clear, he has stage 4, high grade, and a rare form of sarcoma. It is the type of cancer that has not had much funding for research because it is so unpredictable.”
Um….ok. What the fuck do I do with that information? And why look at me and not him? I get that he is the patient, but what am I supposed to do with this? I am only 45, I have a fairy tale life with the man I love beyond words and she is telling me things I cannot even comprehend. I have never even known anyone with cancer. I didn’t even know there were different types of cancer, or that some are more curable or treatable than others. She is telling me that his is not that kind. She is telling me stuff I don’t understand. I felt like we were in a movie and this was just a time for me to act like it is not going to change my life. I had to because of you. You held my hand, so tightly, I knew you were really, really, scared and I had to be the one who was calm, cool and collected. Minimizing as much as I could muster to play down the words pouring meticulously out of the surgeon and his nurses mouths. I realized he brought her in because we had a serious issue and the surgeon wanted to make sure we understood the magnitude. Of course, we could not even begin to understand how those moments would change our lives because we had never been in it before.
The Team sent us to meet with That Man.
That Man was young so it gave us a reason to discredit him. He was direct, yet congenial, which we found disingenuous. He sat down with grace and gave us much more of his time than most patients to explain the options, all of which were unacceptable to us. Basically, That Man said, there are only two types of chemo that might work in slowing down the cancer. One is a derivative of mustard gas and the other is given in a 10 day cycle that will be “plugged” into a port that will be surgically inserted under the muscle in your chest. That chemo will be in a bag and will be administered as a slow drip. That Man kept emphasizing the potential of it “not fully working”. The second option…he said, if it were him, he would “ just enjoy what is left in life.” What the fuck??? That Man said we have to consider the “quality of life” and how we spend “rest of our days on earth.” What the fuck??? Is he a doctor or a philosopher. We sat in silence just looking at him. That Man is one of the top oncologists in sarcoma. We traveled across the country to the best medical institution to get this bullshit??? No cures? No “take this” and you will be fine. Just all of this???
We thanked That Man for his time. He told us how “deeply sorry” he was for the situation and we looked like such a “loving, strong couple” and to “enjoy all of what we have now.” Fuck off.
We held hands, actually, we never stopped holding hands for the hours we endured in the presences of the top doctor, surgeons, nurses, while they told us this was not something they could make go away. In fact, it was going to take you down. So we did what we could do to make it through the day…we went to lunch, drank lots of great wine. and held each other’s hand. Very, very tightly.
I trained in voice for twelve years from 6 years old. Much to my parents chagrin, I did not go into classical vocals, I sang in a folk grunge band for for a few years in the 1990s. I used to smoke cigarettes until I got pulmonary thrombosis (blood clot in my lung) at 24, and had to be in the hospital for 10 days. It was one of the best things that ever happened to me. I have run 53 Half Marathons, 2 Marathons including Boston (through the Liver Foundation). I stopped running at 49 because my relationship was over with running and I started an affair with cycling. I love, no, I am obsessed with my furbaby, Ziggy Stardust. The greatest love of my life is my daughter. I am a Dave Matthews devotee and try to catch as many gigs around the states as possible. And finally…I love the Broulet Brothers, Trixie and Katya, and all things Tim Burton.
