Michael and I met with one of our second opinion opiners on New Year’s Eve. She and my oncologist had a conversation that same day. Yesterday, we caught up with my oncologist in the lobby of the medical building (We both live within five blocks of the building — we were wandering the neighborhood; she was finishing 2012 work. Needless to say, it’s all incredibly convenient.). And here’s what happened.
Dr. Opiner down at the University of Chicago took a hard look at all of my scans and a hard look at me. Her fellow did the same. “You look wonderful!” Thank you. I’ve been meeting with acupuncturists and energy healers and atlas bone chiropractors and all sorts of people in an effort to offset the damage of chemo. Trust me, I don’t look wonderful as a result of treatment.
“Your PET looks like thymic rebound to us.”
Thymic rebound is what happens to younger people for about two months after chemo is over. After the thymus is bombarded with chemo, it bounces back for a bit and then settles back down. This rebound shows up on the PET because PET scans are notoriously sensitive and pick up EVERYTHING (brown fat, infection, inflammation, metabolic activity, blah blah blah. After my sister visited India, her PET lit up like a Christmas tree because of all of the delightful new friends that she had picked up in her gastrointestinal system.).
“Plus you’ve had over 90% reduction in the size of your tumor since diagnosis. Going down from 12×10 to 5×2 is extraordinary.”
12×10? I thought it was 12×6. Christ.
“Before we used PETs to help us with chemo, we would have said that between the reduction in size and how healthy you look and feel that you are completely resolved. Either way, we believe that the better choice is to have another PET in two weeks and consider surgery only after that. On that note, we also believe that a sternotomy [chest cracking] is excessive, and we think you should meet with another surgeon for a second opinion on that.”
“Which part is excessive? The sternotomy or the thymectomy?”
“Both. This is a biopsy, not a thymectomy. A surgeon can get enough of the tumor for diagnosis even if he misses a little bit. Therefore we don’t believe that pulling your entire thymus out in order to get all of the tumor is necessary.”
I must admit that I left her office feeling, dare I say it, hope. This was a new thing for me. I haven’t felt hope or the lack of it during this entire process. It has simply been: I will beat cancer and this is how I’m getting it done. Almost the same as writing a term paper. The process sucks, but eventually you finish and you hand it in and its done. There’s no need for hope because there is no alternative. You will finish the term paper as inevitably as I’ll beat cancer.
I reported back to my own doctor and received this text in response: “totally agree to repeat PET scan and cross fingers. Let’s chat tonight or tomorrow.” Hope continued to blossom as I called my surgeon to cancel the surgery scheduled for January 3.
Talking to my doctor, though, crushed it a bit, and I realized why I hadn’t allowed myself to feel hope or the lack of it before. There are simply too many variables.
“I agree that doing another PET in two weeks is fine. We’ve already waited so long to have surgery that it’s no big deal to delay it further. Hopefully you won’t need it at all. However, you should know that I sat down with our nuclear radiologist, who I’m fairly sure was part of the team that invented the process, and he specifically said that it does not look like thymic rebound. In fact, he’s almost positive that the pockets of activity were very much inside your tumor, which is why I recommended surgery. We’re all hoping that this is a false positive, but the fact that the activity was most likely coming from your tumor, albeit in a very strange way, makes me want to see what the tumor has to say.”
“This is also why the surgeon needs to get all of the tumor. Unfortunately the 10% that could be left behind without a full thymectomy could be the part that still holds the activity, and I want to see what that activity is.”
“Is it possible to do a full thymectomy and tumor removal etc. without the sternotomy?”
“Not without doing incredible damage to the rest of your chest organs. The various instruments would have to be placed incredibly carefully to miss the lungs, arteries, veins, heart, etc. Plus they would have to go through muscle, which would make the recovery process more painful and longer. Which is why our surgeon believes this is the best way to do it. Trust me, Lydia, we’re really trying to make this as easy as possible for you.”
“We’re meeting with another surgeon to verify that.”
We left her and wandered into a department store to look at the post-Christmas sales. And something odd happened when I went to the bathroom. There was a line, and a woman washing her hands turned and stared at me while I was waiting. “Why did you cut your hair?” I didn’t know how to answer. “Cancer?” I nodded. “Look at my hair! This is a year of growth. You’ll be fine.”
Another woman in line turned. “My granddaughter had hair that looked like yours two years ago, and it’s now almost to her shoulders. What did you have? Breast? Leukemia?”
“Lymphoma,” I whispered, stunned at the forwardness of all of these people.
“She’s fine now. You’ll be fine too.”
A third woman turned and stared at my cranium. “You’ll be fine. I had hair that looked like yours twelve years ago. Everything is going to be fine.”
I felt like I was at the bottom of an NFL sized pile-on. But instead of feeling the love of all of these extraordinary women that had been gifted to me, I felt stifled and increasingly panicked. They were asking me to keep hope alive, when all I could feel were the first signals that all of this could go horribly sideways. There is no need for hope when the outcome is inevitable. Hope is only necessary once the outcome becomes a question.
We walked home in a dazed cloud, via Starbucks. A donut and a hot chocolate later, I started getting used to being in limbo.
Just a spoonful of sugar…
Photo by Kyle Glenn on Unsplash
Join the discussion 3 Comments
You are amazing and strong. Just think of the good muscles you are building and how useful they are to all parts of your life. I am proud of you.
I agree with Corinna, Lydia. You are amazing and strong.
Nothing about this disease is inevitable. You have amazing strength, courage, spunk, and oh so much ahead. These plus the amazing art and science of your medical team and your powerful support system, especially a man who absolutely adores you and will do all and anything to care for you, hope is the light that will lead you through this. Love to you.