The Roller Coaster Chronicles: Meet Dr. Doom
Readers: The events in these installments, the condensed version of my book, occurred in 2002. To catch up from the beginning, these chronicles start here.
After learning that I had to leave Michigan to get Zevalin, I had six days to fret about going to another doctor, and fret I did. I worried that a whole new group of people would be clueless about me and my life, and more than ever, I needed the familiarity of people I knew and trusted and who had never, not once, given up on me. Turns out I had plenty of reasons to fret. From the moment the new doctor walked into the examining room, his words and body language clearly conveyed, "There's not a lot of hope for you." Dr. Doom, I called him.
He began by telling us that chemo-resistant lymphoma is not a good sign. Gee, tell us something we don't know. Continuing, he said that less than a thousand patients had gotten Zevalin, and no studies showed its long term effectiveness, especially on patients who had failed chemo.
I wanted to scream, "I didn't fail chemo. It failed me." Then he added that I'd be lucky for it to hold my lymphoma back for 10 months. So if there were no studies to indicate its long term effectiveness, why did he randomly decide that — if it worked at all — I'd relapse in 10 months or less? Did I have an expiration date stuck on my forehead?
Dr. Doom only magnified my fears and frustrations. He never saw how fragile or exhausted I was, though he certainly knew that the high doses of steroids I was taking were depriving me of sleep. My weary, frazzled chemo brain remembered the last thing it heard, which was that I had 10 months to live, if I was "lucky." And so I no longer hoped to see my grandchildren graduate from college. Seeing them start kindergarten seemed a stretch. And all I wanted to do was to spend time with them. Fortunately, my daughter was bringing them to visit 10 days later.
Meanwhile, there was a glitch. Although the FDA had approved Zevalin, insurance companies had not approved payment for it, and it would take Herculean efforts to convince some bean counter to let me have this potentially life-saving drug. While we waited for an answer, I was monitored frequently.
Two days before my daughter's arrival, I had a blood test and assumed that everything was still a go since I didn't hear otherwise — at least until an hour before leaving for the airport, when I was euphorically anticipating holding daughter and grandkids in my arms. And then my cell phone rang. It was Dr. Doom. The blood test two days earlier indicated that my lymphocyte count had soared to twice the high end of the range in which Zevalin can be safely administered. Although the first dose was scheduled five days later, it was doubtful I could have it. That was it. No backup plan. Nothing.
I wanted to clinch my fists and scream. Instead, I turned to Alex, who was thankfully at home, and sobbed uncontrollably in his arms. I'm sure I would have collapsed into a heap on the floor had he not supported me. We'd faced setbacks, but this was the worst. If I couldn't have Zevalin, then what?
And just why had Dr. Doom waited two whole days to call? Blood test results can be reported in minutes, not days. Yes, I wanted to shoot the messenger. His delivery was terrible. His timing was worse. As Alex and I spiraled into emotional freefall, the plane carrying my daughter and her babies was fast approaching Detroit, and I had to leave for the airport.
All the way there, I wondered why Dr. Doom had delivered such awful news without suggesting a backup plan or at least giving me some reassurance. Didn't he have a clue that news like this would devastate anybody? And what options did I have - if any? Was I facing a transplant? What if my sister's blood didn't match? Would anyone's? What if no one's did?
Worse, it was the Friday before Labor Day weekend and we couldn't reach Dr. Kaminski who would never have left us in such a maelstrom. Heading to the airport and into the long weekend, we wondered if there was any bottom to this emotional abyss. And how many weeks or months I would live.
Next Tuesday, Nov. 23: Love kindles a miracle
Betsy de Parry is the author of The Roller Coaster Chronicles and host of a series of webcasts about cancer. Find her on Facebook or Twitter or email her.