I’ll try to unpack this doozy of a week. This task is made more difficult by my speech/language issues, but I’m thinking I’ll just try to leave them in there, and if you’re lost, you can post a comment here and someone else can figure out what I mean. That’s what a team is for, people. Prop me up.
You may have heard the designation NED, which means No Evidence of Disease. What typically happens when someone gets NED, from what I’ve heard, is you get parties planned for you. It’s a cause for celebration, a rite of passage, people celebrating with you because you’ve made it this far and etc etc.
Obviously this is not my narrative. But perhaps, having been a reader of this blog for a long time (or a recent reader who has done some diligent and judicious scanning of old posts), you might have expected a twist. It does make me wonder, at times – do these plot twists happen in order to make for better writing? If I stopped writing this blog, would things get more normal healthwise for me? Perhaps an interesting experiment. But I simply have too much to express right now to stop the writing.
Monday last I had my scan, so I took the day off. It was pro forma, as scans go. Actually, better than that – I was in and out of there early. Instead of lunch, I wound up making an early brunch, then walked around a bit, waiting for an additional appointment with Dr S, my surgeon, who was seeing me for my followup checkup for something that happened two years ago, ancient history now. He still insists on seeing me, looks at my scar on my back, nods when I update him, but he’s just not my primary dude anymore. I don’t depend on him and don’t need him and can barely recall when I used to call his personal cell phone in the evening with questions, as he encouraged. That’s ancient now, two years. Seeing him is almost like meeting up with an old lover, something I also, by chance, did not too long ago. (Actually, doubly weird, because I just had a followup with Dr S almost exactly two years since our encounter. And I had that beer with an ex twenty years exactly after our last physical encounter. In both cases, though such different contexts, there is so much left unsaid… and it’s certainly not going to be said now.)
Anyway, Monday I was already feeling lousy – headaches, sleepiness. So I knew I’d bring that up on Wednesday when I came for my results.
I just looked at my calendar for Tuesday, just to remember, did I work that day? I did. The whole day. My calendar says I had meetings, with a student, then with my boss, and after lunch, with another student. I don’t really remember any of these, except I vaguely feel like I began a useless argument with my boss about something she had no need to argue about (and using the term “argument” even seems too harsh now), and at a certain point I just backed off. There was no point.
Because I send emails to the students while I’m meeting with them, I can now tell you that the morning one seemed interested in a book called Creating Catholics, another one called A revolution in taste : the rise of French cuisine, 1650-1800, and something called Vatel et la naissance de la gastronomie: recettes du Grand Siècle. The student in the afternoon got links to a few different social science databases, nothing quite that exciting.
I also had a lunch date that day, with the librarian I’m becoming friends with, but I failed to confirmed our date on Tuesday until I was already at the place, and soon realized she wasn’t showing up. It was a place I frequented when I lived up there, so even solo, I didn’t mind lunching there. Burger, fries. (I didn’t have my usual beer, though.) Halfway through the meal, I got a couple of frantic emails from my lunch friend, feeling bad that she got the wrong day. We decided on Friday as a new date. (Bad choice, turns out.)
My last meeting on Tuesday was probably over by 3:30 or 4. But my work day ends at 5, and even feeling the way I was, I didn’t feel right, just taking off early. I had seen an email about a foreign language learning software that the library was running a trial for, so this seemed like the perfect time to start learning a new language. I knew I wasn’t in mental shape to start something completely foreign, so I chose Brazilian Portuguese, similar enough to the other languages I speak, and one I’m familiar with from music I love.
Perhaps it was an early indication something was wrong when I took the pre-test, thinking it would let me skip a level or two, and instead only got maybe 60% right. Hmmmm. Maybe this wasn’t as easy as I’d thought. (Later, only much later, it occurred to me that learning a new language wasn’t perhaps the most intelligent thing to do right now, with my brain.)
I assume Tuesday night was more sleep at early hours. I had a half day of work on Wednesday, before my meeting with the oncologist at 1. Unfortunately that half day of work included a meeting with not one, but three students, working on an economics project, and they were coming to me with some late breaking data needs. This was the worst type of meeting to have – I needed to be on my A-game, prepare in advance, and instead I was slurring my words, forgetting them, trying to fill in with gestures. Somehow, I did manage to help them find two of the three things they needed but were not diligent enough to find themselves. The last one, I really fudged, tried to give them a few options and said as a last ditch they should tell their prof they were not able to find the data (but imagine that I took long to say this, with weird and maybe wrong words and some hand gestures). I know, now, that wasn’t my best day. I know there was an actual, physiological reason for this. But not that day. I chalked it up to nerves.
I left a little earlier than noon, and met J at our Japanese restaurant, where we had our triumphal meal after my happy news in January. I thought that eating chicken katsu don would steel me & heal me. Today, it was a little early for lunch, I smelled cigarette smoke on our neighbor, and on the whole, nothing was the way I hoped. I choked part of down my lunch. I barely finished the rice.
We took a bus to the cancer center. Quentin was there to greet me, I introduced him to J, but Q was still wearing his mask and it was somehow off-putting, distancing. Phlebotomist B was his usually charming self, but I certainly don’t think I was.
I passed Nurse Practitioner R in the hall before coming in, and she gave me some thumbs up and smiles that told me from her perspective, this would be a repeat of January – happy happy joy joy. Dr P also stuck her face in for a moment to do the same. But it was clearly after a while that this wasn’t the usual usual.
What did I tell them? I told them about the headaches, the fatigue, the constant need for sleep. I didn’t tell them I’d been falling asleep at my desk between appointments. And – as crazy as it sounds – I didn’t mention the language problems. As of Wednesday, I was sure it was just nerves. Nurse Practitioner R did a physical exam, and found nothing amiss in the old familiar parts, no lymph nodes involved, nothing odd.
They had me leave the place with promises to call if anything got worse with me. In my last attempt at getting something useful done, since I was at the doctor’s office, I insisted on getting an update on my condition to send to my primary care doctor, who has been in the dark for ages (except for what I’ve told her when I go to see her for a strep test and wound up spending a half-hour updating her in person on my cancer stuff). Finally, some medical paperwork to get to her. And it was going to be perfect, because I had actually planned to go see her later that afternoon. Something about these headaches and fatigue.
Instead, I canceled the visit with her. I wanted to go home and sleep. J was around that day, so I sent him over to my doctor’s office to drop off the papers (which would be outdated a day later), while I lurched home and got right in bed.
It sounds like I should have called in sick the next day. Yes, it should have. Instead I went – again – to work, because I had more meetings scheduled with more students, and no sleepiness, no fatigue, and certainly no language issues were going to stop me. When it comes down to it, after seven plus years of being off the career treadmill, I guess I’m liking it. It sure keeps from thinking about the fact I might have, I dunno, lesions on the brain? In case you need to know, my Thursday morning meeting with a student turns out to have been the econ meeting I just told you was on Weds (I had two meetings Wednesday too). I met with economic students first thing, then met this lovely sophomore who was just so great to talk to I somehow didn’t make it obvious I had no speech problems. At the end of our talk she expressed interest in libraries and I told her I’d be happy to bend her ear, but given that my degree is now twenty years old, she might want to speak to my colleagues with more recent credentials. I did not say, you may want to speak to someone about librarianship who perhaps does not have active lesions on the brain.
After my meeting and before my staff meeting, I called Nurse Practitioner R to let her know I was, actually, having speech problems. I had to leave a message. I went to my meeting, not really processing much beyond when my phone would ring so I could leave the room and answer. After an hour, it rung. Nurse Practitioner R said if I had speech problems, I needed to get an MRI at the hospital, preferably the one associated with them. I said, sure, I can do it tomorrow. She made herself plain. Today. Now.
I looked at my schedule. I had another student in the afternoon. Before that, after my staff meeting, lunch with a friend I’d been wanting to see in ages. I did the smart thing, at least smart in my addled mind. I went back to the staff meeting. I waited until it was done, so I could casually, as people walked out on their way to lunch, see if someone could take over my student consultation. Someone did.
Awesome! That left me free to have lunch! My last act as a reasonably normal civilian before returning to hospital/cancer/fear/deathland! I enjoyed it. I had my second burger and fries in the same week. I hope I was a good conversationalist, but my friend is an English professor, so she must have heard some things wrong. She was kind enough not to be blunt.
After lunch, back to the ER that I’d gone to last September when my lung collapsed after a biopsy, but before everything really went to shit. Again this time, the crosstown bus diverted and left me walking a long block. Again at the admissions desk I found myself speaking very quietly. At a certain point they realized I needed to be in there stat. It was busy, so I was on a stretcher, but sitting up, and not in a room because there weren’t any. At first that seemed like not a bad thing – if they park you in the middle of the corridor, sooner or later, they will figure out what you need so you can get moved out of the hallway.
You may be happy at this point to know that I don’t remember very clear details of what took place when. J came when I called, but I don’t know if that was before or after the CT scan and whether he left to give the kids dinner (at my behest) before or after my MRI. I know both of those things happened, and I had to take off all jewelry before the MRI, so I did give J my wedding ring. Sometime around 10 (J came back when the kids were sleeping and a friend came to hang out here), they finally decided based on the brain lesions that I’d need to stay overnight, upstairs, in the oncology unit. (Or was it the neurology unit? No clue.) J brought my stuff, but I told him to go home and get sleep, so an orderly packed all my things and took me upstairs. I was in a room with three others, and one of them, an older woman, was loud and annoying. I finally used my nurse button to complain when she was watching crap TV loud after midnight. She turned it off.
My night was lots of messaging on my phone, and finally, around midnight, fitful sleep. They were giving me steroids and anti-seizure meds through an IV, which may have interrupted my sleep a bit, but I finally plucked my contact lenses out and slept.
Except the neurologists had other ideas. At intervals known only to them, they would turn the light on and ask me my name, some dates, the president’s name, and then to perform some feats of strength. They don’t tell you how you do. That’s not your business. You just have to perform, whether or not they just woke you up.
In the morning, things were better. The day nurses are better. They actually have feelings. The food – which I wasn’t allowed to have the night before – was lovely and plentiful and they even fetched me decaf coffee. I was so grateful I even ate cream of wheat, with gusto, and about half of my very tasty eggs and hash browns. I couldn’t believe the OJ was not crappy Tropicana tank juice, but actually, real OJ, the kind we get at the food coop. While I was amazing at all of this, the food goddess came and took my lunch order. Nay, she DISCUSSED it with me, telling me about the different options and preparations. I finally settled on salmon, mashed potatoes, broccoli, a side salad, and a poached pear for dessert. (Just the act of ordering this delicious meal was enough – I don’t even really believed I’d actually have it.)
I met some foxy doctors, one Irish and the other some African descent, who introduced themselves to me as “medical doctors.” It wasn’t really clear what their roles were, other than being foxy doctors, and at this they excelled, and they laughed at my jokes. Later on they brought in an older doctor who did some more neurologist stuff, and told me he worked with Dr P, which to me meant, maybe my care was going to be transferred back to her?
The night before, I think the plan was to do gamma knife surgery on me first thing in the morning. But I think perhaps things changed when they saw how well I was doing at reciting dates and facts and kicking and pushing and all that stuff? All I knew was, the game plan seems to have changed. And perhaps I wasn’t entirely on board, because I knew what gamma knife was, and I wanted the lesions out asap.
J came mid-morning, after fetching my favorite croissant and then my glasses from the optician’s. Once I could see again, kiss my beloved, AND eat a spinach mozzarella croissant, I was ready for anything.
What I needed to get ready for, it turned out, was leaving the hospital and getting to Dr P, asap. In hospital time, asap means, in two to four hours. I got to eventually eat that lunch I’d been dreaming about since breakfast. But J was there, and probably starving, so even though I could have eaten the whole thing, I left him half. He scarfed it. He let me eat the salad – so perfect and with pomegranate seeds and red onion, and not one bad leaf, I missed the fact that there was a lemon pecorino dressing that would have just paired perfectly. Too bad it was hidden on the tray until too late. I drowned my sorrow with a poached pear – a real pear, with real seeds and stem intact. I couldn’t believe my luck at that meal. At that point, I honestly didn’t care if they kept me there until dinner, because I’m sure the turkey burger I ordered would have been sublime.
After lunch, I got dressed and waited for the nurse to come remove my IV. She did, and then with my business of putting my socks and boots on, I didn’t notice the bandage popped and my arm was spurting blood, everywhere. The nurse was sanguine, amazing, and got it taken care of. I loved her. She used the same nurse call button I got, but she got faster results. Gauze, bandages, cleaning supplies – all were there in an instant.
It was hours, but felt like maybe one hour or twelve, we were on our way to Dr P. “Cab?” I scoffed. No, I could walk. From 1st Ave to 3rd. How bad would that be? As it turned out, bad. I couldn’t walk very fast at all. I needed food. The chicken place we knew about observed the stupid break between lunch and dinner.
I suddenly decided I needed a doughnut, so as I entered the cancer center, J went to the next door Dunkin and got my dream, strawberry cream (and he got the special, chocolate cream, which is the special every day). I ate it after the medical assistant took my temperature, but before Nurse Practitioner R came in. I was obsessed with finishing my donut before she saw me. Not quite. She laughed, of course. (How could she not?)
Today Nurse Practitioner R was in charge. Dr P stopped in to greet me and reassure me, but she had a meeting to be at. (She runs the entire cancer center, when she’s not saving lives.)
So it was Nurse Practitioner R’s job to sell me on the treatment, and this is a job she excels at. No, I wasn’t going to not get the gamma knife surgery. But first, they’re going to give me another type of immunotherapy drug. One that penetrates the blood-brain barrier. Which also happens to fit the genetic makeup of the tumor that was in my lungs, which they took the liberty of sequencing last September, so they would have that in their pocket, if they needed it. They need it. I have the BHRAF mutation. So this drug is tailor-made for me.
Did she happen to mention this immunotherapy comes in pill form? No IV infusion this time. And they happen to have a half jar left over from a different patient (I am pretty sure I heard her say they didn’t die) and here it is and they just ripped their name off the label, that’s why it looks like that? And you’ll get your own dose next so make sure you use this coupon for $10 off, and they’ll send it right to your house!
Yes. Yes. A million times yes. This is why, for those have (with all the love in your hearts, I know) told me I need a second opinion, respectfully, no, I don’t. Yes, I was doubting a lot at the hospital. I won’t lie. But Dr P and her team are coming through for me, again, as they have before. I’m counting on them. I don’t think my trust is misplaced.
As far as the timing for this latest wrinkle? I honestly think it’s perfect, somehow. It’s what I’m meant to do now. I don’t mean that I welcome this crap. Or that I’m even happy about it. But if it needs to happen now, with everything else in my personal, familiar, and global scales? Who am I to say no?
I am just here to live. That is my whole point. To live, to live for my family, and maybe, when there’s a little extra time, to teach them how to live with this level of adversity. Be lucky. Find someone(s) who love(s) you and is your champion. Find the humor now, because that’s the whole point. And when it’s your turn to kick ass, kick ass – whether that means showing up at your appointments, or taking pills on time, or even sometimes just realizing, yes, it’s not right that you’re speaking funny, and you should probably get that looked at. Stat.