A Pain in the Neck

My doctor’s advice to take it easy has really been stressing me out. That’s not a good sign. In fact, I didn’t even think to ask if she meant physically or mentally because I was already planning to ignore her advice and wondering how I could make my boyfriend un-hear what my oncologist had just said.

He comes with me to my appointments to make sure I don’t ignore my doctor’s advice.

I got the results of my PET scan today, and I had asked if there was anything I should be doing to get better. I should have known that it would be the one thing I feel I can’t do, but that I definitely should do.

The doctor showed me the PET scan, starting with the first, taken in April, that showed the lymphoma as black splotches. There were quite a few of them—the large mass in my chest and neck, and a bunch of dots through my upper chest, as well as one big spot near my belly. The later scan shows just two spots—the one that had pushed my ribs out in my chest and the belly spot. It’s good news—they’re still shrinking and I won’t be getting stronger treatment, just the remaining four (now three, as of yesterday) ABVD treatments.

But whereas the first PET scan after four treatments showed dramatic improvement, the scan after eight shows moderate improvement. It’s slowing down, while I am getting impatient. So there might be some cancer left after all this is done. Maybe.

Since that second optimistic scan in late May, I feel like my life has been falling apart, mostly with the stress of finding a new job and new insurance. I can’t relax. Since June, it feels like I’ve had a heavy leaden pot of worry in the center of my being, roiling with a big worry and stress stew. I understand my TV cancer companion Walter White more than ever. I want control. But I feel like I have very little right now—not over my body, my finances, my emotions. The latter I can do something about. I still need to work on my attitude.

I don’t cry over hair, no matter what. I’ve cried over test results my whole life. I’ve always beaten myself up about not doing my best. One day In kindergarten, the teacher gave out little awards for being able to recite your address. I knew my address. I was so excited when it was my turn. And then, when all those expectant faces were turned toward me, I blanked. This type of performance anxiety still haunts me today. We had another chance the next day and I got my award. In the end, everyone got one, of course. It was a round piece of orange posterboard that said “AWARD” with a gold star and ribbons that the teacher had stapled to the bottom. I was extremely disappointed in myself for having to use my second chance. I felt as if I didn’t deserve it.

It was the only award non-sporty me ever received until my high school decided to give out letters for academic achievements, and I lettered in academics. I sat near one of my friends who was a star swimmer and track athlete and was in my AP and honors classes. She was really nice, so I know she thought I was also against the academic letters when she said, “What am I going to put on the back of my jacket? Nerd?”

I was secretly kind of proud, but I obviously didn’t have a letter jacket. I wondered if it was too late to join a sports team so I could wear my academic letter. I don’t care about sports much, though, and who gets the ball to wherever it’s supposed to be. I’d rather work myself up into a frenzy about grades and what people may think of me professionally. I really do need a nerd letter jacket. I still have the letter somewhere. The little symbol, instead of a football or volleyball, is a torch. Presumably to fend off the cool people with letter jackets who want to give you wedgies and shove you into lockers.

And so now I have test results that disappoint me a little bit. Today was like getting a B or C when you expected an A. Or not getting a tiny paper award when you expected one.

Yet the remaining spot near my belly is also a glaring example of how useless my previous worrying has been. I knew there was a spot below my diaphragm that was considered cancerous—it’s what put me in the Stage 3 Hogdkin’s lymphoma category instead of 2. But until I saw the scan, I had no idea where it was, and I assumed that it was a smaller area, late to the cancer party that had been going on in my chest and neck. I didn’t realize it was one of the bigger infected nodes.

For the past months during treatment, I’ve had pain pangs in my abdomen that I’ve assigned various possible causes in my mind, from liver failure to intestinal distress. It’s the cancer, probably (hopefully) shrinking —a variation on the same twinges I feel in my upper chest from time to time.  I picture it going down like this. Maybe the black dot on my PET scan is my heavy cauldron of useless anxiety.

I’m struggling now more than ever. Everything just got real. Before this week, I could still kind of pretend like this wasn’t affecting me. I had hair. I had insurance, which runs out at the end of the month.

I didn’t realize my veins were in such sorry shape. I have a little bump on my left arm where part of a vein has hardened. There’s been talk of a Medi-Port, which typically stays in for a year and gives me the heebie-jeebies, though it looks a tiny version of Tony Stark’s Iron Man implant. My other option is the PICC line, which also gives me the heebie-jeebies, but stays in for less time.

Tons of people have had this done, so I need to admit to myself that if I need one, I need one, despite 100 percent chance of the heebie-jeebies. I need to stop trying so hard to stay “normal,” whatever that is. I don’t mind the baldness. I wear my wig only for other people, so I don’t freak them out. The same with the headcovers—that and to shield my head from the sun. (The pork pie hat, I just ordered, though—that’s for me.)

I’m hoping that since I have only three treatments left, my veins will hold out. The nurse yesterday, when she saw my tiny veins, told me she didn’t see how I got away with not having a port. My left arm just wasn’t accepting an IV, so we used my right again—for the third time in a row. When she was giving me the first round of drugs, though, she seemed more optimistic and said I probably have at least three good veins left. That’s all I need—for now!

I’m a little disappointed in my left arm for giving out on me. My left side, where this started and where the lymphoma remains. Side of my spare rib, my weaker eye and the ear that sticks out like the handle of a pitcher. A new study shows that there may not be such a thing as left-brained or right-brained thinking, so at least my creative and thoughtful right brain doesn’t have to forgive the left brain for those shortcomings. It turns out I’m just bad at math. I have a hard time distinguishing my right from my left anyway. I always make that “L” with my thumb and forefinger, no matter what—in the middle of yoga class, while giving directions to people who visibly look alarmed and doubtful (as they should be) when they see me do the hand “L.” Oh, well. It’s about body teamwork at this point, I suppose.

I also talked to a social worker yesterday, about what I would be eligible for now that my income has decreased. That helped—at first because I had to pull it together to talk to her. It’s the first time I cried while I was at chemotherapy. And it wasn’t even about bad news, just OK news. I really need to take a lesson from my veins and toughen up.

Plus, the social worker reminded me of some of the programs MSKCC has in place that I should take advantage of, including the Visible Ink writing program and the Look Good Feel Better program. I told her I’m not really into wigs, but she said there’s also makeup application tips. I haven’t been wearing much since my recurring eye infections, not that I wore that much makeup to begin with. But I think the social worker stressed the “feel better” part of the program, probably because I was still a little teary when she walked in. I put about as much effort into my beauty routine as ever—very little.

I prefer to spend my time working out—at first, in my early twenties, it was always to stay thin or lose weight. It wasn’t until later that I realized I worked out because I truly enjoyed it. It’s odd that after years of not caring about sports (and I still don’t), I’ve found what keeps me grounded is physical activity. It balances me out.

I’m eager to get back to my classes and yoga. Yet how many times have I heard that yoga isn’t just the poses? It gave me balance and sanity, and now that I’ve been told to take it easy, I’m going to have to practice less vigorously, but no less mindfully. But that’s another post completely. I’m eager to get back to working out, but this new “take it easy” advice probably doesn’t include kickboxing. And a Medi-port or PICC might limit my mobility for a bit.

I was beating myself up about something last week, and one of my former writers said, “Time to practice some self-compassion!” She’s right. I need to update my to-do list. It still will have jobs to apply for and deadlines to meet. But I’ve added three more reminders: Self-compassion, take it easy and stop worrying.