It has been a month since my last infusion of interferon. The subsequent weeks have hosted some highs and some incredible lows.
I haven't written anything in a long time. I have been unable to write for fear of drowning. But I have regained my strength, and I can begin again.
On April 19th I had another PET scan, and it showed absolutely no sign of cancer. My oncologist literally danced into the room singing "your scans are clear!" There may have even been a high five.
And so it seems I should have been jubilant about this incredible news. From Stage III Melanoma to cancer free in two months. I should have been elated. But the joy didn't come. I waited and waited for days. Instead, in the week immediately after treatment I was more anxious and depressed than I have ever been in my life. I was nearly suicidal. In the incredibly dark space I occupied during those days, life was meaningless and my cancer-free state was only fleeting. I have never felt so alone or so trapped in my own mind as I did in those days.
I can look back at this experience and point to four things that worked together to create the hellish nether-world that consumed me:
1) Because I suddenly stopped taking Lorazempam -- prescribed for my treatment nausea-- I went through what is called "benzo withdrawal." Lorazepam is an anti-anxiety drug that has an off-label use to manage chemo nausea. This introduces us to the irony of fact that, although I was not experiencing high levels of anxiety during treatment, the drug used to control my nausea actually worked to produce high levels of anxiety once it left my system.
2) One of the side effects of interferon is depression. This is a chemical effect, and since the side effects of the treatment are cumulative, and since the drug is still in your system during the week after treatment, it makes sense that I started to feel depressed the week after treatment was over.
3) I went from a diagnosis of Stage III Melanoma to cancer free within two months. The week after treatment I was shell-shocked. I was literally seeing images and events as flashbacks: the moment of diagnosis, being told it was Stage III, calling my parents to tell them the news.
The months of February and March had been lived in survival mode. "Survival mode," in the shape it took for me after the diagnosis, meant that I was able to focus on organizing my medical life, do some work, and even sleep through the night. I felt mostly okay and even hopeful. Sure, I had my moments, but I was working from a place of functional denial that allowed me to keep it together and even find joy in parts of my day. I was in what our friends Emily and Elizabeth call "cancerland," and in cancerland the rules are different. On April 19th I suddenly found myself kicked out of cancerland, and I was lost.
4) Fear of recurrence. Any of you who have done some reading on cancer know that this is a huge issue for survivors. The cancer is gone, but it could come back. This fear can be absolutely paralyzing.
Suddenly these four elements converged and knocked me on the ground. I found myself in the ironic position of being cancer free and incredibly, inconsolably sad. I tried to talk myself out of these feeling through all kinds of rationalizing and comparison. It didn't work. And so I spent an entire week not functioning. I cried and cried; I curled into a ball on the couch; I stared blankly at nothing; I lost my appetite; I couldn't read books because every line was a reminder of human mortality and the pointlessness of life.
A number of things happened to help me through:
- Rhonda. She was so tired, and so ready to be done with being the caretaker, and yet she found herself in charge yet again. She worked hard to strike a balance between taking care of herself and holding on to me. She told me I would be okay. She calmed me down. She distracted me.
- Sound Western medical advice. After the hugely negligent lack of advisement in the first place (someone should have said: whatever you do, do not stop taking Lorazepam cold turkey!) the cancer center stepped in and helped advise me about tapering the medication.
- Sound non-Western medical advice. I went to see Dr. Connelly, and she loaded me up on herbal supplements to help "improve my soil." Fish oil, vitamin D, St. John's Wort and Rescue Remedy. These botanicals plus her kindness and reassurance helped me feel sane and normal.
- Talking. A strange thing happened in the week after treatment. People stopped calling me. I think that people wanted to leave me alone and give me time to rest. And I think that many of my friends, who had spent the last two months worrying to death, could finally breath a sigh of relief after the good news. I didn't want to, but Rhonda made me call my friends. She was persistent, and I did. It helped to talk to some of the people who know me best. (And it is still very, very good for this extrovert to hang out with her friends on the phone ;)
- TV. Don't knock the television! It was absolutely necessary and totally therapeutic. One of my psychologist friends explained that it was interrupting neurons and, therefore, interrupting the anxiety.
- The garden. It was no accident that, in my earliest cancer correspondences, I asked people to imagine me in the garden. The week after treatment ended I spent hours stringing the pea trellis while listening to an affirmations track on my ipod. I was moving so slowly, and it was cool and damp outside. Yet I remember those hours as some of the first moments of having hope that things would, indeed, eventually get better. In the subsequent month I have spent a lot of time working in our garden. For a while hand tilling each bed was my morning therapy. Then I moved on to sowing seeds and creating paths and designing growing spaces. There was an entire morning dedicated to finding -- and killing -- cutworms. The garden has been an integral part of my recuperation.
- Food. I have made some serious changes to my diet in the last month. I am eating a "low glycemic index" diet chosen as my best nutritional approach to preventing recurrence. While I have no grand illusion that food -- only food -- can prevent or cause cancer, I do know that there is a vastly important psychological and physical benefit to eating in ways that I feel are sustaining and healthy. I have become a crazy-veggie-eating woman, and I feel pretty good about that.
- Exercise. I now exercise every day. I have had a couple of "days off" here and there, but I found that regular, daily exercise was one of the best and fastest ways to get out of the dark place. Dr. Connelly confirmed that there is a study that shows exercise can be more effective than Prozac at altering your mood.
Well, tonight I went to UW-Marinette's graduation ceremony. I had the perfect excuse not to go to graduation -- who could blame me? But I like to go to graduation, and it is important for me to see my students. I have been laying incredibly low in my work life, and so I was somewhat unaware of who was even graduating tonight. But I went.
As I sat on stage with the faculty and staff I was thrilled to see one of my favorite students, Ray, among the graduates. Ray is a non-traditional student who took English 102 with me in the fall. I so enjoyed the intelligence and honesty found in (written and spoken) conversations with Ray during our semester working together. He began to come to office hours during the semester, and we would talk about writing, reading, and eventually broader life issues. He is one of those students who most inspire me; he has overcome a lot of crap, and his road to becoming a college student was windy. But as a college student he was brilliant, hard-working, and focused. And, by the end of the semester I had the clear sense that Raymond was one of the kindest people I had ever met.
Ray sent a friendly email early in spring semester just to say hello. I quickly told him about my diagnosis, and he wrote back immediately with compassion and concern. We wrote back and forth, and we made a tentative plan to meet for tea. I sent him the link to my blog and he read it. And all through my treatment, Ray kept writing. He told me stories, he sent pictures of his family, and he shared cancer-related articles and resources. I stopped writing back once treatment started -- I was officially on medical leave, and I didn't check my email at all. And, yet, Ray kept writing.
I found these emails from Ray two weeks ago when I started back to work part-time. I was so overwhelmed and still quite depressed. I could barely type a short email to colleagues let alone write anything that came near explaining the truth of things. I wanted to reply to Ray, but it would have to wait until I felt better.
And I have been feeling better. The combination of all of the good resources and self-care tactics above have worked well. I haven't had a really low day (or even hour) in two weeks. I am no longer taking any prescription medications. I can sleep through the night on my own. And most importantly, I once again have hope. I hope that I have beaten cancer for good. I hope that I will live to be old. I hope that I will have many more years living this life that I have. I still feel scared and worried, but those feeling no longer consume me. Some days I even feel lucky and brave.
And so it was a total surprise to me tonight, as the graduates strolled out of the auditorium to be greeted by faculty and staff, that I began to cry.
I should say here that I have been long expecting to unexpectedly cry in public. I thought it might happen when I arrived in New York for my second opinion and saw my closest friends for the first time since diagnosis. I thought it might happen when my mom arrived from PA to help during my first week of treatment. It could have happened with the "cancer free" proclamation.
But it makes perfect sense that it happened during the graduation recessional. As students began to walk through receiving line of faculty, one student after another abandoned the propriety of handshakes and nods to come over to give me a hug. And I started to cry.
And it was in talking to Ray, after receiving a big, warm hug, and seeing the concern in his eyes, that I realized how intertwined we are in this world. He explained that he hadn't heard from me, and he was worried... Is everything okay?
Of course, how could he know or understand the million miles of my journey in the last weeks? How could I explain that I was declared cancer-free and then sank into the biggest depression of my life? How can I explain that I am going to live, and it has been so, so hard?
In her keynote speech delivered this evening, my good friend and emeritus professor Katherine Holman reminded her listeners of the relationship between respect and wisdom. I cannot speak as eloquently as she did about this subject, but I can say that tonight I found a deep mutual respect at the core of my life as teacher. My students have helped me to become wiser, and I am profoundly grateful.
