We arrived home from Colorado last night. The kids were awake enough to eat pizza at 10 pm (because it felt like 8 to them). They didn’t get out of bed today until almost 9. It’s going to be a struggle to get them on the bus to camp tomorrow at 8:20 a.m.
The new app on Facebook that offers to tell you what happened on this day in your personal history helpfully reminded me today that last year at this time I was in the exact same shape after our vacation – sick as a dog. I’m coughing up stuff, it hurts to cough, and I’ve already drunk about a gallon of Throat Coat tea today. I’ve barely left my bed, in part because it is so far superior to any bed I slept in on vacation.
Because I’m not feeling well enough to talk to a resident today, I’ll wait until Dr P’s office opens tomorrow to see whether they think this is dabrafenib-related or just shitty luck. If the latter, I’ll need to go see my primary doctor, Dr S, whose office is nearby but where the wait times are ridiculous. She also gets a little bent out of shape when I show up after a few months and she hasn’t heard from Dr P and I have to tell her what’s been going on. And what a doozy of a tale I have to tell. “Oh, since I saw you last? Not much, just a touch of brain tumors. A sprinkling. Okay, a dozen. And some laser surgery and the medication that may be making me cough my lungs out right now. But hey! Good news! My lungs are clear now! At least, they were in mid-April. I have another scan in a couple of weeks…” (Dr. S will be too busy furiously typing all this in to the computer system to scowl or look shocked, of course.)
So yeah. Another scan in a couple of weeks. There are those couple of weeks to get through. In the meantime, my fruitless search for employment is ongoing. I just got a “passive rejection” (my coinage), meaning via a departmental listserv from the place I work very part-time during the academic year, I learned the name of the person they hired for the job I applied for months ago without hearing anything. So that’s settled, then. Maybe I’m done with library work. It may be done with me. If that’s the case, maybe I wish I hadn’t had the brief reminder earlier this year of how good I was at it. That would just make it suck even more.
Absent the steroids, the air has gone out of my sails (or maybe it’s just the post-vacation malady/exhaustion talking). I need to return to a few writing projects, but I’ll probably fall asleep in the middle of working on them. Now that the steroids have faded I have been checking into the side effects of the other drugs, and for one of them it’s fatigue, for the other it’s “weight changes” (in my case, gain). Awesome. So as long as I’m on dabrafenib, I’ll stay on these two other drugs, which make me fat and sleepy. Good thing it isn’t summer and I don’t need to be seen in a bathing suit! No, wait – I mean, good thing it’s summer and the bathing suit I now have to wear may as well be a burqa!
It was simpler up in the Rocky Mountains. There wasn’t much wifi. There were lots of horses. I couldn’t look for news on how screwed up the world is at the moment. I’m happy for gay people who want to get married and now can. I’m happy someone went and took down the Confederate flag. But I’m afraid of weaponized crazy people, both at home and abroad. And I’m worried this is pneumonia (an affliction with me that even predates cancer) and I’ll have to rest for a whole month. I want to start moving again.
The boys learned to ride horses this week. We saw parts of the national park you can’t get to by car (and we didn’t see hikers either). It’s yet another thing we can do now, when we go to places where it’s possible.
Our last night in Estes Park, we walked over to the pasture where the horses were grazing, to say goodbye. I was lagging behind as usual (medication-induced foot problems, damn you!), but J told me that as soon as the horses heard the boys’ voices, every single horse’s head raised and turned in the direction of the sound. A moment of perfect beauty I may have missed witnessing myself, but just its description fills my heart with peace and other good things.
Greetings from Estes Park, Colorado! Above, the way we started our day. J, Young J, and Young A (the latter two being total novices at horseback riding beyond guided pony rides) did great. I sat tall in the saddle and had to suppress whooping for joy because I didn’t want to scare my gentle old horse, Sarge, whose primary interest was bending down to munch on grass whenever we stopped.
I made it. We made it. It has been ten weeks since my brain was found full of lesions, since my language was scrambled, since the unthinkable was happening – good news about clear lungs followed immediately by very bad news. There is no way I could have gotten here so quickly without Dr P, Nurse Practitioners R & K, and my neurosurgeon, Dr K, and his team.
Today, I spent an hour on horseback, my heart bursting with pride seeing my kids take their first real ride and not be afraid at all (though perhaps a bit cautious at first). We climbed higher and higher, and got closer to the snowcapped peaks we hope to see even closer today by car.
It was strange to wake up to such an amazing experience, because last night I had a dream which I remembered, for a change, and it was very bad. I was walking in some city and saw a van take take a corner too quickly and skid on slick pavement and crash through the wall of a construction site. I rushed to the other side of the site, heard a construction worker with a German accent calling 911, and then I saw the woman who had been driving. She was African-American, wearing a bandanna over her hair. How can we see faces in dreams of people we don’t know? I didn’t know her. But here she was, convulsing and dying right in front of me.
It wasn’t until just this moment, writing the dream down, that I had the slightest clue what the dream might mean. I’ve been thinking a lot about the massacre in Charleston. We’re staying at a place here in Colorado that draws a lot of white guests from the South. I can’t speak to them without wondering whether they fly the Confederate flag outside their houses, or display it on their cars. This dream is some kind of allegory.
I woke up after it happened. It was about 2 a.m. J was awake – he hadn’t been sleeping at all. Perhaps the altitude affects us in these strange ways. It took a long time for us to fall asleep again. I closed my eyes and tried to change the direction of the dream. I willed the woman to live, to survive this unsurvivable accident. I don’t know if I succeeded, even though the entire premise was born of my own brain. (My own, hopefully no longer diseased brain.)
I am grateful to be feeling this well. But I am in great spiritual pain for our country, for the ease with which guns, ammunition, empty or inflammatory rhetoric, and racism, flow, violently.
Last night we sat by the very engorged Big Thompson River, after eating s’mores. The boys threw rocks and pebbles into the torrents with glee. When Young A asked what would happen if he put his arms in, “just” his arms, we knew it was time to leave the river bank. Retreat. (Still no clue what the German construction worker represented. Open to guesses.)
The school year ended. It’s only when it ends that you let yourself perceive how much of a weight it has become by the end. The kids’ disappearance from the house in the morning accelerates into something that feels like it’s only a half-hour long, and their restlessness is palpable. I’m sure no one becomes a teacher because of the last week or two of school, when they are forced into roles more akin to cat herder… or prison warden.
We made it. We all did. It wasn’t long after the year began that my lung metastasis showed up. And then the brain stuff in mid-April. So in a way, my metastatic cancer experience has sort of bookended the school year.
It was a banner year for both Young J and Young A. Last night as we ate Indian food for our Shabbat dinner, I asked them each what had been their favorite thing about the year. (Some of their teachers may be reading so I won’t report on their findings. Let’s just recall that kids can sometimes have much better short-term than long-term memories!)
Then I wanted them to know what I was most proud of. Young A began reading this year, and became quite a role model and official reader in his class. It was easy to praise that.
Young J’s greatest accomplishment, in my opinion, was not academic at all. This year, Young J learned how to be a friend, and found good friends, three of them. Going through his school notebooks yesterday (always a dodgy prospect when you have a kid with ADHD), I found one of his math notebooks had been repurposed into a notebook for listing out how the school could be made better. It has about five chapters worth of ideas, and it seems clear that Young J was the official recorder – some of the candy suggestions, for example, were things he’s never tried and I’ve never heard of.
And then, not willing to leave well enough alone, I told them that my favorite thing about the school year was that I was still around by the end of it. Of course, I did not phrase it that way, and I’m hoping my kids don’t learn for a very long time how serious my illness was (is?). I told them I was happy to be feeling better at last.
I’m strapped in an airplane seat right now. We’re heading to Colorado for a week before the kids start camp. We’ll be in Denver visiting J’s aunt, and then go with her to Rocky Mountain National Park. I was in Colorado once before, at age 14, when my brother U played in the Aspen Music Festival. I’m looking forward to sharing the majesty of the mountains with the kids. I hope neither of them is afraid of heights (what a time to discover it). And we’ll also do a lot of railroad-related activities. And maybe some horseback riding, which I was cleared to do during my last call with Nurse Practitioner R.
Mainly, though, I want to shout from the mountaintops that science has allowed me to survive (thus far) the tests of the past months, and I have a community that has supported me and sustained me and cared about and for the kids and J, and also patiently listened when I was a raving lunatic on steroids. Turns out we didn’t need that trip insurance after all. I’m glad the fee went to waste.
I’m feeling good enough to ride a horse. Nothing else really matters right now.
I’m glad to be rid of them. Really I am. It’s another step towards wellness. I’ve been sleeping so well at night, we almost all overslept this morning, waking at close to 8.
But they are making their absence known. I’m – as you may have noticed – a less prolific writer than I was. Also, I woke up yesterday morning with a pain in my wrist as though I’d broken it, or slept on it wrong. By today, it was even worse. I called my primary doctor, but she wasn’t going to be able to fit me in before I needed to pick up the kids from school. I considered going to urgent care, but that threatened to eat up my day. A day to spend in pain, granted, but a day all the same, not to be wasted in pursuit of healthcare.
I went to the gym and managed to get through class with no pain, except when putting away my equipment. I even managed to do fifty squat jumps over a Bosu ball, something I certainly hadn’t tried since my little brain problem showed up. And it was fine! I didn’t fall over!
After gym class, I placed a call to Dr P’s office to consult with Nurse Practitioner R about my predicament. I figured it might be related to the steroids. When she called back, she confirmed my suspicion. The steroids were anti-inflammatory and therefore masking the joint pain that can be a hallmark side effect of dabrafenib. I’m glad I called, as always. And glad I looked up the list of side effects once again, because I’ve been experiencing hair loss too. I have very thick hair, so it’s noticeable only to myself. I hope I’ll get to avoid the other symptoms, but at least now I am prepared. Thickening of the skin can also be a side effect, as I discovered at the podiatrist the other day, when he shaved off about three inches of calluses from the balls of my feet.
The highlight of my day, though, was the arrival of cousin R in town. We see each other usually once a year, because she lives in North Carolina. But she wasn’t at Thanksgiving last year. We’ve bonded lately over illness and science dorkdom (although she is actually studying for a degree in biology, where I am a mere dilettante in oncology). Also, what she has been through medically in her young life (she is 24) kind of makes me feel like a dilettante too – she had a kidney transplant at age 13. She’s a tremendously accomplished and smart person and I’m so excited to see what her next move is. Go R!
I’m back in the doldrums again now though, heating pad wrapped around my bum wrist, while J makes dinner before going to play basketball. (The kids won’t get baths tonight, by executive order of Mama.)
Whoa. Several days of silence here. I’ll eke this out right before I crash for the night. Thank you for not worrying about me. I mean, I hope you haven’t been. This is much more like me, not on steroids – letting a few days slip past before posting or replying to emails or getting things done. I have some pages in the printer that I sent to print three days ago. I haven’t looked at them yet. Meantime, today I somehow crammed in about three things I needed to do, right before picking up the kids from school at 3. If I hadn’t spent two hours in bed with the AC cranked, recovering from my grocery shopping trip on a very humid day, I might not have had to hurry.
J and Young J returned from the school camping trip today, happy and unscathed and unrained on and not a tick on them. Young J lost neither his good hat nor his water bottle. (But I was glad J was there to keep tabs on this stuff. And the teachers appreciated his help, too.)
Next week is the last week of school. Then we leave immediately for a trip to see some very tall peaks. There is a strong possibility of horseback riding, so today I placed a call to Nurse Practitioner R to see whether the proscription on my doing any activity involving bouncing is lifted yet. After she ascertained that it was horseback riding, not skydiving, I was planning to do (I guess they rule nothing out with me, ever since I made the bold move of eating avocado when I was about to develop a rip-roaring case of colitis), she said to do what I like if I’m feeling up to it.
I’m hoping this time around I get a super mellow horse, but prior experience tells me it may not happen. I’ve been horseback riding about seven or eight times, maybe ten, tops. So I’m not a maven, but not totally new at it. I’ve in the past managed to: get the horse who’s rearing back on its hind legs in the stall and is named “Feisty”; get the horse who knows a shortcut none of the other horses would dare take, which maybe pins my leg between its body and a tree for a short while; have my stirrup somehow come undone, halting the whole group, on a steep descent in Simi Valley; or get the horse who gets a little too close to the edge of a cliff on a very sandy trail, while we descend from a mesa in Chile. I wish I were making all this up. It’s extreme sports kind of stuff, and I am decidedly not an extreme sports person. Maybe it’s a vibe I give off to horses. Maybe they see me approach and know I am a person to mess with. Anyhow, I’m hoping the hypothetical Colorado horses are not in on this vibe. The horse in 2001 who escorted me across a lava field in Iceland in February’s freezing rain did not misbehave. (Maybe it was too cold to?)
Anyhow, this week I trained for being outside my comfort zone when I went to Young J’s last day of soccer class festivities. There were four or five moms there, two little brothers (including Young A, who sat clutching his backpack and refused to participate). We played “Clean Your Room,” which involves making sure all the balls wind up on the opposite side of the room to where you are. We played three rounds of tug of war (moms vs. sons, we let them win). And finally, we played a game of soccer. I am not a sporty person. Never have been. I managed to make a goal for the moms’ team because the ball rebounded off my shin into the goal, and we were playing in a very small space. Did I mention I’d had a pretty bad headache going into all this? That there was pop music playing to pump us up? And that the way the sound bounces off the walls of the gym made me feel like my very head was melting off? It was 77 degrees in the gym, according to the thermostat, which I lowered in the hopes some unseen source of ventilation might kick in. I truly felt like I survived that hour, way more than I feel like I survived brain surgery. (Brain surgery was actually way more relaxing, and the musical accompaniment was Satie.) Young J was so happy to have me there, so for his sake, I was glad to suffer. A horse in Colorado should be no problem, compared to that. As long as its name is not “Feisty.”
I met my new shrink this week. I really liked her, but she doesn’t take our insurance. According to my calculations, I’ll have to see her 21 times before our out of network deductible is met and I see any kind of reimbursement at all. So I’ll have to see how this works out. On the plus side, she had me fill out two forms, one screening for depression (I decidedly don’t have) and one screening for bipolar disorder (I definitely do have… when I’m on Decadron!). I filled out the bipolar questionnaire with my recent steroid experience, and then quickly explained as she looked through it that none of what I had marked is true for me normally. She did tell me I seemed like I had things together, which is so nice to hear from someone officially certified to tell you so. Still, I think I can still benefit from talking with her – there are a number of things in her background which make it a good fit. I hope to find some work soon to finance the head shrinkage. I’m not looking super aggressively, and certainly not looking for a daily commute type job just yet. It sure would be nice to have some more translation work fall in my lap. It’s all about where you place your lap, I suppose.
I’m looking forward to a classic summer weekend – swimming pool, picnic, BBQ. The only thing is, I’ll be stuck in the shade the whole time, unless the elusive gift of cloud cover without rain lets me emerge from the shadows. I’m feeling lucky. It could happen.
This was how my life was before. Before getting cancer for the third time. Before going back to work for about five minutes before cancer struck again. Before getting cancer for the second time. I used to make myself a list the night before of things to do the next day. Sometimes I would even figure out what time blocks I’d use and put things in chronological order.
Even with a list I still probably only got 35% of each list done each day. I didn’t know steroids could help with that. When I was high on Decadron, I never dropped a single ball. And I never made lists. Everything was clear in my head. laid out, almost a choreography of what needed to happen when. Do I miss that? Do I miss not letting things slip? Maybe a little. But I don’t miss it enough to go back to sleepless nights (or knockout drugs for sleep), or the manic, uncharacteristic gregariousness that I couldn’t control if I wanted to. Now, when I ride the subway, I’m no longer worried I’m going to talk to strangers. I’m not worried about starting conversations with people I usually avoid.
Last night was my most successful night of sleep since kicking the nightly Ativan habit. I did wake up at 5 a.m., but somehow coaxed myself back asleep. I think it was putting the pillow over my face to block the light that helped. Why is it so light out at 5 a.m.? Who needs that? And why do the birds have to make such a racket then? Some respect, please, birds. Sleep is still very hard work for me.
I wonder how much of the sleeplessness is part of my general anxiety. I placed a call to Nurse Practitioner K today, to check in and to find out exactly how I’m supposed to keep taking dabrafenib, the wonder drug, if it can elevate my liver function and I wouldn’t know it without a weekly blood draw. She said that I need to stay attentive to my general well-being, and that if I start feeling more tired than usual (hah – I will have to work very hard to figure out what my normal baseline is there), I should come in. This means tuning in to myself at a whole new level.
I feel like I am pretty aware of what’s going on with my body, generally. I can tell that my system has gotten over the worst of the steroid withdrawal. I didn’t spend the entire day in bed today, just a couple of hours. And I made it through a solo evening with the boys tonight without coming close to freaking out. (Even when Young A peed all over the just-cleaned bathroom floor due to bad aim.)
But I think the sneak attack of the brain tumors has probably changed me forever. I had headaches – just headaches – and I didn’t know what was happening to me until I had trouble talking. I wasn’t scared last fall, when cancer made a move on my lungs. I was pissed off, but not particularly scared. Now that my brain is involved, maybe I am a little scared.
In a couple days, I’m going to do something I haven’t done since junior high – go see a therapist, one who works with cancer patients. I’ve gotten pretty far for years with the self-talk I’ve done in journals or other writing (like this blog), but I think I may be at a loss for how to cope with the anxiety that builds up in between scans. My next scan is July 13. That’s not very soon. The lack of information concerns me. Maybe I’ll learn some new ways to cope with it. Maybe I should make a list of topics to cover, so I don’t misspend my hour.
All I ever really wanted out of the experience of living in New York City was what you see above. That was imprinted on my cortex pretty early (and until second grade, via a black-and-white TV). When I first moved to the city, my housing situation had a company town feel to it (it was subsidized by my job), and then when I moved in with J to a hundred-year-old building two doors down, there was the gritty griminess of old NYC without much of the charm. (Except for our formal dining room. Ah, that room. It was almost enough to make you forget the mice and roaches.)
When we moved to Brooklyn, and particularly when we had a kid, and then two kids, in Brooklyn, Sesame Street began to happen. It became easier to stop and talk to neighbors, particularly the ones who tended to park themselves on the sidewalk anyway. One of our neighbors is essentially ageless, and we lose track of each other for months at a time. When I see her re-emerge from her building once the weather is good, our reunion is always joyful. When Young J was about two and a half, they ran a race against each other – she pushing her walker and Young J with his doll stroller. (I am pretty sure she won.) She likes to talk about her childhood in Alexandria, Egypt (and then sigh at how much the world has changed for the worse).
My experience of cancer in Brooklyn has also been a bit Sesame Street-like, though I don’t know that they’ve covered that topic on the show. The conversations I’ve had recently, the magic realism of my life here – in this seemingly dire circumstance, yet surrounded by loving and caring neighbors and neighborhood fixtures, practically feels like a ready-made episode… brought to you by the letters M and Q, and also the number 8.
A few weeks ago I tried to insert myself into the planning process of our block’s annual block party. I showed up at a meeting, and was very hopped up on steroids, and thought I could actually get shit done. I didn’t realize how difficult that would be. There was an unbelievable set of competing priorities and people talking over each other and frankly, unchecked discussion of hip surgeries. It was not going to happen. I tried to be helpful via email – also difficult. After designing one flyer that simply disappeared into the ether because I needed an email addresss to put on it, I gave up. One positive change over last year was that the NO PARKING signs went up much earlier in the week. As if by magic, by today we had nearly no cars on the block. So, even if nothing else happened, the kids were going to have a ball, biking and scooting and running amok with no traffic.
Today was the big day. It started rainy, but as the hours went past, the weather improved until it was the most perfect day ever. No humidity, sunlight filtered by the tall trees on our end of the block.
We took the kids for pizza, and discovered another block party happening one block away. They had a bouncy house. We took the kids over there to bounce. It was a little feral in there. And then we let ourselves be distracted by conversation with other parents we knew, and suddenly I saw Young A take a nosedive to the asphalt. After ascertaining that his head had not broken his fall (despite a couple scrapes on it) we left the premises immediately. I was instantly thrilled that our block hadn’t managed to scrape together the money for a bouncy house. Who wants that kind of liability? I was excited for our block’s non-event!
We got back to the block and Young J’s lifelong friend S and her mom came over (they used to live upstairs). After Young A recovered from his fall (with an hour of Netflix) they all went out to take possession of the street. This, to me, is the greatest luxury a parent of a young child in New York City can enjoy – the ability to lose track of your kid for many minutes at a time, and know they are at one end of the block or the other, and they’ll come zooming back by you presently. I know we could move to the country and enjoy this on a regular basis. But I can easily settle for once or twice a year. There were also stoop sales, a little girl selling jumps on her jump rope for a dollar, lemonade stands and bowls of free candy and chips – everything you’d want out of a day like this.
J, in the meantime, got his guitar and joined some guys from the next building over, who he’d found jamming on the sidewalk on Memorial Day. They set things up nicely today, with mics and everything. And they played this Dylan tune that just made my afternoon. (J tells me this isn’t the best version but it’s what I could find.)
Thank you, Sesame Street. Thank you, neighbors. And thank you, cancer, for hopefully buggering off for a while, so I could enjoy it all.
I slept most of yesterday. It was good to be able to do that, because last night I had a rock show to go to.
We got home late. I was up a little later. This morning I managed to walk the kids to school, stop at the cafe for some tea and to finish reading a book, but since then it has been sleep punctuated by more sleep. I can barely keep my eyes open to type this. Ouch. Ah, just lowered the brightness of the phone screen to the minimum. Much better.
This is what it feels like when Decadron leaves your system. It leaves you shipwrecked, bereft, completely taken apart. Every muscle sore, every thought incomplete. And it may be a couple days until it gets better. I might place a call to the nurses now, just to get a sense of how long I’ll feel this out of it, but of course they can’t tell me, and they might tell me to take some more steroids, and then I’d be back to square one. Nah, not calling.
Last night was one of the highest highs of the week, even better than finally getting the frame off my head on Tuesday. I went to hear a band called Ride. They were an integral part of my college years, and then they squabbled and broke up and I’d only gotten to see them once, in 1991, the rock show that convinced me to wear ear plugs to rock shows ever since (I didn’t fully get my hearing back for two days after that one). I truly never thought I’d see them again. Last November, I think it was, our friend Jeff, acting on a hot tip from a friend, let us know they’d be playing in June and did we want to go? DID WE WANT TO GO? Well, I sure did. J hasn’t known their music as long as I have.
I can’t remember when in November it was that these tickets were bought. I do remember wondering how I’d be doing by June, that distant calendar page that held so much promise, but also so much uncertainty. I do remember being sure I’d still be alive. But last November was a wash for me, life-wise. I spent that month tethered between the bed and the bathroom, not realizing how hard my immune system (and the half-dose of the drug I was able to get before getting sick) was working to rid my lungs of tumors completely by the following spring.
I also didn’t know I’d have brain metastases and that I’d be having noninvasive brain surgery a mere two days before this concert. But that all happened, and by the time I got to the concert venue, despite my aching feet, no one could have been happier than me to be standing there.
After we endured the opening act, Ride took the stage and opened with the most perfect opening number ever, their towering, psychedelic anthem, “Leave Them All Behind.”
I had to sob. Just a little. For what I’d been through this week, this past eight months, the past two years plus. I squeezed J’s hand – hard – and I let the tear tracks dry on my face while the music swirled around me.
This music kept me from ever being interested in drugs. It was my drug. I remember countless times putting a Ride CD in the player or a tape in my Walkman and waiting to be transported. (Probably when I should have been writing a paper, or thinking hard about my future plans.)
Wheels turning round
Into alien grounds
Pass through different times
Leave them all behind
That works, I thought. I’m perpetually looking for metaphors and it seemed like a good one. “Them” – the tumors. Rejecting them. They are behind me for good. Yes. The sound was up way loud. I felt vibrations in my shoes, all the way up through my stomach, even into my infirm brain. It felt therapeutic.
The song goes in a different direction by the end though:
I don’t care about the colors
I don’t care about the light
I don’t care about the truth
I don’t care about the truth
Obviously, not my reality. But I sang along anyway. Because the music is part of the fabric of my experience and even though it’s not metaphysical poetry or anything, it’s a part of my past self. I felt lighter and younger and much less sick last night. Thank you, Ride.
Given my propensity to endure all kinds of pain, I managed to get through the entire show standing without falling over, even though my feet were screaming in pain for the first hour or two (they sort of went numb after that). I’m seeing the podiatrist on Monday. I honestly don’t think he will have anything nearly as high-tech or amazing as gamma knife technology to offer me for my bunions and foot pain, but I’m hoping at least to figure out what is wrong.
This weekend offers us a slight break from the kids, a block party, a trip to the theater with the kids. I hope the Decadron doldrums clear in time for me to enjoy these things. My bed is very comfortable, but I know its contours too well by now.
I haven’t posted a photo of myself here yet. I guess this is as good a time as any. I think the photo of the woman with two band-aids on her forehead in the brochure was a mock-up. She hadn’t just been through gamma knife surgery! Or she had and she allowed them to slap some makeup on her. Or she had been the first patient of the day, not the last. Young A saw me with my band-aids and said, “You look good with your two band-aids, Mama. Well, sort of.”
I remarked to the neurosurgeon, Dr K, that I was used to going last because of alphabetical order in school. He was literal-minded enough to reply, “Hmmm, well, today we’ve gone P… D… A… W.” Dude, you could have just said it was alphabetical. I’d have believed you. No, actually it was the number of sites to be treated. The others had one or just a few. I had nine. NINE. I don’t really go in for half-measures, do I? Is it better to have nine small tumors or one huge one? Are these questions going to keep me up at night? (No, it’s the 10 mg of intravenous Decadron that will probably do that.)
After the fentanyl and an Ativan that melted under my tongue with no water required, I got a hold of myself. J visited me (also to escape the other families waiting in the microscopic waiting area and agreeing out loud with the TV which was showing Fox News nonstop), but I was so out of it with exhaustion I didn’t feel like talking much. Also I kept hoping they’d come for me. I saw stretcher after stretcher roll by. It wouldn’t be my turn until after 1 p.m. I’d been fasting since midnight. We’d arrived at the hospital at 5:30 a.m. I told J that the thing that made it more tolerable this time around, unlike the endless wait for my melanoma surgery two years ago, was that this time, they had already given me some drugs. The drugs helped. I may be learning to accept them. Not recreationally, but as a means to an end. Also, around noon, I was allowed to drink some water, and then some apple juice. The nurse forgot to bring the bendy straw with the water right away, and when she swooped back in with one she laughed seeing me try to find the right contortion to sip water with my head in a frame. Bendy straw it was.
Last night I again attempted to sleep without the Ativan-melatonin combo. Guess how that worked, the night before surgery? Turns out J and I lay next to each other all night not sleeping. At least we weren’t 7 years old and didn’t turn it into an all-night slumber party with lots of giggling. I feel like that may have happened once recently, when I was on the heavy doses of steroids. I will neither confirm nor deny.
Awkward transition time!! Something that today’s hospital marathon had in common with last fall, when my lung collapsed following a biopsy and I spent 36 hours in the ER, has to do with a monthly visitor. Male readers of this blog should either walk away now, ears covered and singing LALALA, or suddenly become much more enlightened and able to handle some female realness. OK?
I don’t have any particular fondness for my period. I was thrilled to see it go bye-bye for a full TWO YEARS each time I gestated and then nursed a baby. Thrilled. Lately, my period comes with migraines, if I don’t exercise like a madwoman before it comes, and if you’ve been following my life these days, that isn’t always possible. Last fall, I wound up having to stay at the hospital overnight in the middle of it, and with a collapsed lung I was hooked up to suction in the wall, so trips to the bathroom were inconvenient. They gave me a bedside commode, which the nurse had to empty. Totally humiliating.
Yesterday, after a week of anxiously waiting for it, Aunt Flo arrived. It was a relief, as I’d been hoping not to have to stop by the pharmacy to buy Plan B. A baby can’t happen to us right now or ever again. The factory is closed, we can’t keep babies in file cabinets and have no further room to accommodate one, and Miracle Brain Cancer Drug is NOT friendly to fetuses. And there’s no telling how many years of follow-up blasts of radiation I’m in for until I’m given the all-clear.
After sighing with relief I realized: Today was gamma knife day. Today would be my heaviest day. I’m glad I wasn’t attached to an IV pole, was not excessively sedated and therefore fully ambulatory, and a short walk from the bathroom today. Other than that, it sure wasn’t much fun to haul my sedated ass out of bed when I didn’t want to.
(Ladies, you may bring squeamish males back in the room.)
Finally, after the rest of the gamma knife suite was cleared of patients, I was walked back to the treatment room. The gamma knife suite is in the basement of the hospital, a good portion of which is under construction due to damage sustained during Hurricane Sandy. (While J was in the family waiting room, he heard some jackhammering and quipped, “I didn’t know gamma knife was supposed to be so loud!”)
J had given them my phone, which I pre-loaded last night with a playlist labeled “gamma knife.” I think the staff found this funny. There wasn’t actually a need to make it a playlist, because it was all of the tracks from the same recording – Jean-Yves Thibaudet playing Erik Satie. It turned out to be a fair-to-middling choice, because even though the gamma knife machine is completely silent, there was a constant quiet beep during treatment, and classical music is notoriously hard to volume-control, even more so when you have to do it via microphone while you’re inside a multimillion dollar gamma ray machine, having your brain zapped. I think I missed most of the first three Gnossiennes.
I went into the room and I told them I didn’t want any more sedation. Just the music. I used to be claustrophobic. That is what freaked me out at age 9 while on a tour of tunnels that went under Niagara Falls. I still get claustrophobia when I’ve tried on a too-small item of clothing in a dressing room at a store and am having a hard time getting out of it. I no longer fear medical claustrophobia. I knew this machine (which has doors that slide open to accommodate you when it is switched on) was going to help me, and in that sense it was even a more worthy machine than the merely diagnostic CT or MRI. I made friends with the machine today. What I didn’t have time to do was ask the neurosurgeon or the physicist to explain the different parts to me. They were a little busy and/or wiped out.
I sat on the “couch” (as they call it) and carefully leaned my framed head back. It needed to make precise contact with a clamp on the couch that would click me in and completely immobilize my head. My head was pretty heavy with the frame, which is where having strong abs helped me. I didn’t think my abs were very strong until one of the nurses commented on it. I was glad I’d been to the gym the day before, and had done lots of abs work. My abs are super sore tonight, and I can’t be sure if it’s from the gym yesterday, or from the workout today, lying down and getting back up with a titanium frame bolted to my head.
I had to reposition myself a couple times, but I finally lay back and heard a click. Then, they buckle you down to the couch. I guess they can’t risk someone really freaking out. I felt totally calm. They put a bolster under my knees, which was okay but not high enough. I probably took up the whole length of the couch. I was the last patient of the day, and also the tallest.
I asked for a break after maybe half an hour. I didn’t deserve one or need one. I think I needed to pee, but, not knowing how big a deal that would be (and not having access to the certain bag in my purse I needed), I let that slide and just enjoyed a break. The radiation oncologist came in with the nurses, and encouraged me to stretch. I was a little overzealous, and bashed my elbow on the side of the couch. They looked extra alarmed, but I reassured them I was fine.
I got strapped back in for the rest of the ride. I heard myself snore intermittently, quite loud when it bounces off the wall of a machine that is about a half-inch from your nose. I checked in via microphone one more time. There were 54 minutes remaining. I decided not to check in again for a really long time. The next time I checked in, there were three minutes remaining! Three!
Getting up from the couch was where the abs were most tested. The nurses sort of pulled me up by my frame but very slowly, so my abs had to werk. I felt fine, because I wasn’t all whacked out on Ativan, so finding my footing was easy. (I’d seen the other patients leave by wheelchair.) I walked back to my room, and then they got my frame off.
It took two nurses, a screwdriver (forgot to ask what kind), and a bowl. I asked whether the bowl was to catch brains. The nurses kind of jumped/gasped, and then laughed. The gamma rays did not affect the humor tissue. Yay. Getting the frame off was pretty much as uncomfortable as getting it on and as uncomfortable as my entire orthodontic journey. (I silently cursed the memory of my orthodontist.)
Then darling J was there, with a slice of pizza, a strawberry doughnut, and the nurses brought me apple juice, and I drank and ate unencumbered by a frame over my face. We had a good chat with Nurse C, who grew up not too far from me. She also taught me (while removing my IV) how to get tape residue off your skin quickly and easily – alcohol swab. We packed up, she walked us up to the lobby, and I hugged her.
In thinking over the day, perhaps the most bizarre aspect was the attire of all the medical personnel involved. Two years ago, when I had melanoma surgery, it was standard OR gear – scrubs, gowns, hairnets, masks. Today, the nurses wore regular scrubs, and the doctors? Were all in suits and ties. Not wearing gloves or masks. The machine was in an enormous room, and once treatment started, I was completely alone in there. I was told there were video cameras aimed at me in the corners of the room. I’d shift my legs from time to time.
You’ll notice I haven’t posted a photo of myself in the frame here on the blog. (I have posted it elsewhere for those who know me elsewhere). There’s a reason for this. Last night, I went on Flickr and also Google Image searching for treatment diaries by people who’d been through gamma knife surgery. I found several. I found that all of the people whose faces I’d seen in the frame hadn’t made it. It was a sad discovery.
Please understand that I in no way compared my situation to theirs – in fact I made a point of not finding out much about their clinical histories – but I do dedicate this post to them, especially anything that was remotely funny. Because they all looked like people who enjoyed a good laugh. Why else would they have taken a frame selfie?
I’m trying to learn to be a better cancer “citizen,” and part of that is honoring people who went through similar experiences and did not get to triumph, perhaps because their circumstances were different, or their insurance or lack thereof barred access to better treatments, or because they simply got cancer in the wrong year, before all of the things that have benefited me could have benefited them. There are so many permutations and so many reasons why things go right or wrong. I’m so sorry things did not go their way.
Now I’m going to take advantage of my brief hiatus from dabrafenib (today and tomorrow) and eat a yogurt at 10:20 p.m. This is what living it up looks like for me these days.
They screwed the frame into my head. The worst moment was the tightening of it. Reminded me of getting my braces tightened. The lidocaine shots in my forehead stung more than the ones in the back of my head. None of it was unbearable. Then I had an MRI.
I have some fentanyl coming through the IV. Before they gave it to me I was sobbing intermittently. I was so excited to get here and then I got here and it was real and much more scary. My nurse seems to recognize me from my time in radiation. I didn’t remember her but she reminds me a lot of my friend S, a nurse midwife. Same calm vibe.
I did ask them not to sedate me completely as I am still hoping to take this process in and remember it. We’ll see. Right now I’m starving. And sleepy. More later.