It took me all morning to psych myself up, because my vision is kind of poor with all these drops I’ve been putting in, and an intricate latticework of floaters coming through my visual field basically all the time. But I finally got out on my bike today. Twice around the park, even though I could have gone another round.
I went to my usual stopping point in the park, where I sit to contemplate for a while before the big effort of getting up the hill for the last time. Today, though, I found that this same spot is where they have set up the boat rental concession. No more staring off across the tranquil water, watching fish flop around. Now there are boaters, staffers fetching coffee for each other, waivers on clipboards to be signed. I need a new contemplative spot! There’s a really nice gazebo which I never approach because it always seems to be occupied by couples.
After the ride, I was too exhausted for words. I’d done everything right – not put sugar in my coffee, made myself a power brunch with kale and avocado in it, drunk a lot of water… and I didn’t feel even remotely energized. Today was my second day off Keppra, but I can’t tell if it was that that made me so exhausted, or my body being unaccustomed to strenuous exercise two days in a row (I hit the gym yesterday), having caffeine yesterday for the first time since last November (I went for coffee w a gym friend and plumb forgot to order it decaf!), or the fact that I was out at a rock show last night and didn’t get home until midnight.
You’ll notice I’ve gotten very good at examining exhaustively all of the possible reasons I might be tired. This is because Dr P’s nurse practitioners ask you these sorts of things when you call with any complaint. I find it’s helpful to have this data at the ready. Also, I’m hyper-aware of what’s going on all the time because last April, the only sign I had for weeks that anything was wrong with me was that I was tired and headachy all the time. That was literally it. It wasn’t until I began having trouble speaking that this seemed at all abnormal. And then, of course, it was brain tumors – a whole garden of them.
After my ride, I tracked down some salmon for dinner, because Young J finally decided he was willing to try it (YESSSSSS). He’s almost unrecognizable from the kid he was a month ago, even. He’s finally started using toothpaste, also, after refusing for ages. And tonight he sat with his guitar and practiced the three chords he learned in his three weeks of guitar class. (Young A is still out of control, randomly aggressive, and driving us all bonkers. He’s lucky he’s so cute.)
I am not even sure why I began this post – perhaps, as with all the rest of these posts, to have as a reference (in case things go bad again) that I did once feel up for biking, and if Future Me gets sick again, that would be good to remember. A year ago, before my lung biopsy, I rode three laps of the park. I’ll get there again. Maybe farther.
It’s a weird holiday, this one. If I were in Israel right now, I’d love to be taking a hike like the one pictured. I hope one day I’ll get to do just that, with J and the kids.
Here, in the States, the only real option is to plunge into a prayer book and fast. People wish each other an easy fast. It’s not actually supposed to be easy, so I never know what to respond to that.
It’s weird to think about atonement when you either are currently sick or have been very sick (and I, in the past year, have been both). It’s weird because of the duality of my feelings.
On the one hand, I can’t imagine having done anything grievously wrong this year. I was so sick after all. How can you do wrong when you’re that sick? When you are sick, you have that sickly halo, and everyone wants to know how you are, and no one would suspect you of any evil or wrongdoing.
On the other hand, I feel like all I have done this year is be a burden and cause trouble. I’ve been nothing but trouble to the ones to whom it falls to take care of me and love me. And I have been a very difficult person this year. (This is where my therapist usually steps in to interrupt me and challenge me… but she’s not here right now!)
On the other hand… there is no other hand!
Luckily, Judaism offers us the chance to atone communally and collectively. That, I can get on board with. I hereby ask forgiveness for all of the cheating, lying, hate-mongering, and yes, even murdering, members of my community. Let the coming year leave no place whatsoever for baseless hatred.
Closer to home, I have apologized countless times to J and the kids, in private and in public (here on the blog), for all of the unpleasant people I have been this year – yes, people, not person. I’ll explain.
One of my favorite local rabbis asked recently on Facebook where the four children from the Passover Hagaddah are during these equally important days of the Jewish year. He yearns to hear from them, because they bring their individual capacity to understand the issues at hand, and he feels it would be helpful to hear from them now as well, when repentance is the order of the day.
Perhaps the answer is that the four children (wise, wicked, simple, and silent) inhabit each of us simultaneously, and this time of year is the time to recognize the multiple personalities that dwell within us, making us more complex than the sum of our physical attributes and achievements – and making us complicated individuals, who can approach a day like this with great internal conflict, conflict which doesn’t even necessarily get resolved! Instead, via the medium of fasting and collective prayer, the individual is worn down, stripped down, and the physical discomfort prompts new understanding, new perspectives, new approaches for the new year.
At least, that is my understanding of how it works in theory. Last year, for the very first time in my life, I completely skipped Yom Kippur. J and the boys went out to my in-laws’, as we usually do, but I stayed behind. I was newly diagnosed with metastases, biopsied, and recovered from a collapsed lung, and I was pretty damn mad about all of it. I decided that the last thing I needed was to enter into any sort of conversation with God. So I stayed home that entire day, did not fast, did not pray, and did not ask forgiveness.
Instead, I stayed home, rested, and I began mapping out this blog – what it would be, what it wouldn’t be. I also had a long chat online with a former colleague whose writing I admire, and who pointed me in the direction of a number of memoirs she thought would be good for me to read. I walked over to the public library, and like a Yom Kippur miracle, they were all on the shelves – every last one.
This year, I thought I was in a different place. My tumors continue to shrink, to the wonderment of me and my doctors, my CT scans keep being unremarkable. I’m off the hook scan-wise until November. Last night, I joined some friends and went to see a favorite rock band I’d seen back in June, when things were so much more unsteady for me. My recent eye discomfort (a second case of medication-induced iritis) was waning at last. My feet didn’t even hurt much.
As the opening number began and the oscillating stage lights inflicted optical assault on the audience, I realized my good eye, the right eye, the one I thought was all better, was hurting again. I enjoyed the concert, but this time not quite as much, because I was shutting my eyes defensively whenever the lights came swinging around again.
This morning, I called Dr P’s office and spoke to Nurse Practitioner R. She told me it was imperative to get to the eye doctor at once. I attempted for the umpteenth time to claim something was more important (in this case, the impending holiday, which I was going to attempt to participate in once again after last year’s hiatus). NP R wouldn’t hear of any delay. The fact is, the eye doctor is the keeper of all knowledge when it comes to afflictions of the eye. Even though Dr P and the nurses can identify the cause of the eye problem, they really can’t help me solve it.
That falls to Dr D, my ophthalmologist, whose office is run like a poorly-oiled, decrepit machine with a horrible pop radio soundtrack. He is an absolutely lovely man, and as far as I can tell, an excellent ophthalmologist. But I sat in that office for more than three hours today, and only about 20 minutes of that time was spent with the doctor. The rest of the time, I sat huddled in a corner of the waiting room, freezing, because I was under the air vent, the staff refused to change the temperature, and I was so anxious about leaving the house in time I forgot to wear a jacket. (The weather has taken that fall turn, and for two or three days running, I have neglected to heed it.) I was also shoehorned in as an emergency patient, which meant a longer wait.
When I finally saw Dr D again, he said I had correctly diagnosed myself with iritis for the third time. I was proud. I was glad. I knew how to cope, even though it wasn’t going to be fun. The iritis treatment regimen means dilating your pupil three times a day, and steroid drops in your eye six times a day. My left eye can now stop being dilated, but now my right eye rejoins the fun. Then, he told me he’d need to examine my pupil dilated. (That added another hour and change to my ordeal.)
Dr D has said from the beginning that he’d much rather treat iritis, than have me stop taking the medication that causes it, and risk me dying of cancer. I find this sweet, but also perhaps a tad melodramatic. He doesn’t seem to have a lot of contact with cancer patients, at least not my particular type of cancer patient. But he also teaches, and as such he’s taken an enormous interest in my case. Today, he made it official by asking for consent to photograph me and talk about me in grand rounds. He called and managed to get Dr P on the phone, and my heart swelled as I overheard them talking to each other, two concerned and engaged professionals with just my weird case in common. (Dr P said she’s only had one other patient experience iritis while on this therapy.) Dr P promised to email Dr D some medical literature about the medication I’m on and its side effects. And when Dr D repeated to her what he has said to me many times, about not wanting me to die, I heard Dr P say, confidently, “Yeah, we’re not gonna lose her.”
While I have said many times that I feel lucky to be in my particular circumstance, I wouldn’t have the luxury to feel lucky, if I didn’t also have an army of supporters to be grateful for. From J, Young J and Young A, to family and friends, to the doctors and nurses, all the way to a fellow cancer person whom I have never met, who just posted a lovely comment on the blog while I was composing this post. I’m so glad you’re here.
I’m weaning myself off of Keppra (the drug that is responsible for most of my troubles *). The withdrawal causes sudden headaches and continued spaciness accompanied by irritability (why yes, I did indeed take the kids to a birthday party with lots of hammering going on today). I hope I’ll recognize myself once this is all over, because I kind of don’t right now. Did I mention I’m also still dilating my left pupil three times a day due to iritis? And I’ll be doing that all week until I finally see the eye doctor on Friday? I can barely use my computer or laptop because I don’t want to mess with the monitor brightness settings. So most of my [extremely important] transactions are taking place on the phone.
But hey, my bumpy “chicken skin” is almost gone! And the soles of my feet aren’t hurting these days!
I’m craving routine like I currently crave chocolate. A nice predictable run of weeks, into which I can insert the really good things like normal meals and regular exercise and scheduled blocks of productive writing time. But that is going to mostly have to wait a few more weeks, until all the holidays are over at last and there is a more solid block of school days. (And then – whoops! – I’m going away for a few days.)
Tomorrow, I see Dr S, my melanoma surgeon from April 2013. It’s almost laughable I need to be seen by him. What can he tell me, at this point? Wear sunscreen? That it will take another year before my surgery scar completely stops hurting? (That’s what he said last year.)
But I’ll also see Dr P, and either Nurse Practitioner K or R, and that will be good. They are good people to share good news with. And I’ll walk out of there with the date of another hurdle, my next CT scan. Another long morning of fasting, another bottle of berry-flavored barium, another IV, another trip through another expensive machine. Hopefully by the time that date comes, I’ll be grateful for a disruption to my routine.
*In college, my fiction writing workshop teacher gave us a writing prompt in class one day,which had us selecting as a first sentence any one of a series of statements (which he later revealed was from a psychological screening test, given to prospective retail workers, I think. The one I chose was,”I know who is responsible for most of my troubles.” Try using that as a first sentence and see where it takes you…
Thumbs up! But, you know, somberly. Contemplatively. In the Dutch 17th century style. By candlelight.
Today I had an MRI, waited a scant hour, and then was ushered in to see Dr K, the neurosurgeon, for results.
By contrast, in the past week I was reading another metastatic melanoma blog, this one from outside the US. The blogger was expressing frustration about getting her test results, which would not be available until A MONTH AFTER THE TEST.
If nothing else, living this experience has made me aware of how crucial timing is in the treatment of this disease. My tumors were discovered in April, and I began drug therapy right away. Even a month later, before surgery, there was progress.
One may have one’s feelings about the way health care works (or doesn’t) in this country, but my heart cries out that a person in the same boat as me – almost exactly the same boat, as it happens – has to wait that long to get crucial information and be able to act on it if need be.
I feel very lucky indeed that I didn’t have to wait for the good news today. J met me at the hospital, and I was already in a good mood even before seeing the doctor. I’d survived another trip in the dark, noisy MRI tunnel, after all, and felt giddy that I was done with it.
Dr K’s nurse practitioner came in first and began scrolling through the images from today, comparing them with July and April. I’m sure she and Dr K know exactly what they’re doing, but seeing them scroll through images of my brain – MY brain, with which you’d think I’d be more familiar, except who spends time examining images of their own brain? – I realized I’d never be able to actually do what they do. Comparing small blotch to smaller blotch, but seeing other blotches and knowing those are perfectly fine, just some plaque built up since I haven’t played enough Scrabble or done any calculus, perhaps.
The NP left the room telling us that things were 90% positive, but she couldn’t give me the all-clear. Dr K got to do that – almost every spot treated in June has shrunk, some looking now like just shadows on the image.
Except… there was one small surprise: a spot in my brain that had been seen before, had been zapped with gamma rays, and is actively bleeding right now. And this is normal. According to Dr K, this is seen frequently with melanoma – tumors bleeding before they die. So I have an active brain bleed, but it’s not in a spot that will affect anything, and he’s officially not worried about it, so neither am I. He actually said he was surprised not to see other tumors in this state.
I’m… intrigued, I guess, that I’m walking around like this, and that the MRI may have caught a tumor in the process of dying.
In the meantime, I’m halving my dose of the reviled anti-seizure medication, will stop taking it by next week, and am now free to drive.
Which means all systems are go for my writing retreat in October. The one where I’m going to finish ALL THE WORK.
Today, it’s a year since my lung biopsy, an ordeal that predated this blog. I won’t go into the details just now, even though I still remember every painful detail.
The circumstances surrounding the lung biopsy (and the resulting lung collapse the next day) are the subject of an essay – a funny one -I’ve been thinking about for ages, which I’ve gone through a couple drafts of, and which I made the good/bad decision to show to an editor friend. Good, because she liked it and was encouraging and gave me great feedback on it. Bad, she’s asked me about it a couple times since. Now I’m in the position where I should make it known that I am not just an ideas person – I am A Completer. A Closer. A Finisher. But she doesn’t know I’ve never particularly been strong in any of those roles.
I am really, REALLY good at brainstorming. Always have been. I’d be great during the ideas phase of whatever project you might need me to think about. But after that point, when people are supposed to go back to their desks and Do The Work? You’d probably want to hustle me out of the building at that point. I’m basically no good at that point. If anyone has any ideas as to what line of work this skill set sounds well-suited to, I’d love to hear about it. (Don’t just say, “consulting.”)
Anyhoo, tomorrow is my brain MRI, and today I’m spending going food shopping and cooking dinner for some friends in a jam (and for us), and then oh yeah, at night I may have a drink with a friend who’s turning 50 and giving a reading. So, today is not a good day for sealing the deal with this essay.
Tomorrow, though. I like tomorrow. There’s this gorgeous garden between the MRI place and the neurosurgeon’s office, which I noticed last time I was in that vicinity. Maybe I’ll take my laptop there between appointments.
It all sounds a little ideal, doesn’t it? When have I ever taken my laptop somewhere outdoors and not wound up staring off into space?
All of which is to say, I know you’re waiting to see the finished product, K. And the three or four other things I want to write after I finish that one. I’m trying to emerge from multiple fogs right now – summer’s residue, the anti-seizure drug I want to quit, and the idea that life needs to continue apace, whether or not I am assured a long lease.
It’s New Year’s Eve. Not the ball-dropping kind. A hush descends and you start stock-taking in such a different way than what is needed in the fridge and what the kids need for school tomorrow.
This morning began meditatively. Which is to say, the Lice Lady paid a house call, at my parents’ house, because the kids were sent home early from school with lice on Friday. At the moment when I was called to pick them up, having just come from a two and a half hour eye doctor appointment where my other eye was diagnosed with iritis, I was hoping to catch a nap before picking them up. I never managed. I may have thought about Job as angry tears sprang to my eyes on the two block walk to school, my bad eye stinging even more.
We freaked out, even though my parents were kind enough to let us come down for our Rosh Hashanah visit, braving the risk of an infestation (as of this morning, no adults here have lice and the kids are much better). We seized and bagged up the very beloved stuffed animals, the couch cushions, basically, overreacting and doing what you’d do if you had (GOD FORBID PLEASE NEVER EVER EVER) bedbugs. As we were reminded repeatedly this morning, head lice can’t live off of heads. Young A has been deprived of his stuffed kitty and Young J of his giant teddy bear, for no good reason.
Armed with a professional grade lice comb, which makes the task of search and destroy much easier, the Lice Lady relaxed us all while she combed through our hair and told us about all the ways people go overboard about head lice.
The kids quite enjoyed themselves, it felt like a scalp massage to them. Which is good, because we’ll be doing these combouts daily for two weeks, after which we’ll need to do a weekly preventative combing. None of it seems daunting anymore. I’m so relieved. We’ve got this. Not just J, who was the first to actually deal with the problem (and thus the first to comb live, wriggling nymphs from the kids’ heads). We will get over this. We both can do it now.
We had dinner at my brother G’s house tonight. The kids always adore visits there, which offer so much freedom (to play with their cousins, far out of our sight). We shared the Rosh Hashanah cards they’d made at school, Young A’s full of love and a drawing he refused to describe when asked. Young J said he copied the message from his classroom whiteboard (it was written all in Hebrew). That may well be, but it seemed eerily accurate that he wished us a new year of happiness “and lots of good health.” I had made a pinky promise with Mom not to start bawling during certain prayers. We managed to keep it together, I am proud to say.
On the way to G’s house, I had trouble unraveling a knot in the Star of David necklace I had been planning to wear. I had to carefully pluck at the knot to avoid breaking the gold chain, which I’ve had since I was a little girl. I was trying hard not to see a parallel between this minor struggle and my very conflicted feelings about God and religion these days. I eventually triumphed over the necklace. The other thing, jury still out.
On the way home, we somehow wound up in a discussion with the very sleepy kids about what your “soul” means. Young A wanted to know. Which meant I had to find a way to explain it in five-year-old terminology. I came up on the fly with, “Your soul is the part of you that makes you feel like you, but is also something you can’t see or touch.”
Ironic that the thing I’m struggling the most with these days, cancer, also fits this description of the soul. Yes, cancer can be seen – but often, only by experts. Unlike cancer though, I don’t think they can remove your soul. At least not yet, and not without your consent.
I’m falling asleep in my chair. Time to get some decent sleep.
I was in a hurry this morning. Lots to get done before I rushed out the door to the eye doctor. So I did not get to tune in to the annual reading of victims’ names at Ground Zero. Instead, while I waited for a cake I was baking to be finished, I read some of these. As always they made me cry.
As always, I am angry on this day. As time passes, I think more and more people tend to let go of their anger about what was perpetrated here. People want to move on. I find it useful to renew my anger. My feeling is, I don’t want September 11 to become something I can dismiss with a slow shake of my head and a sigh. It was mass murder, and makes me just as angry today as the day it happened.
This morning I had a new thought. I thought about those who were dealing with cancer or other illnesses when the attacks happened. How difficult it must have been – for them, for their families, for their caregivers. The overlay of something horrible on top of something else horrible.
I’ll try to keep my perspective on this in the coming weeks, when I have to deal with an MRI and appointments right by the UN, at the worst possible time of year to be moving around in that part of the city. It will be inconvenient. If we’re lucky, it won’t be deadly.
After a day or two of severe ear pain and no hearing – in the right ear this time – I’m finally on the mend… just in time for my left eye to start hurting and being a little irritated!
What this feels like, more than anything, is the game of Pong. The earliest version of the game, with the harsh beeps. The ball is pain, discomfort, unpleasantness, and it ricochets from one side of my head to the other. Now that I’ve had bad right eye, bad left ear, and bad right ear, I guess it is time for the left eye to have its turn. I’m being proactive and already have an eye appointment for Friday morning. I’m getting good at side effects. (Technically, the ear thing isn’t meds-related at all – just a little added bonus round of awful.)
I got my foot soles shaved down yesterday too. Which was good, because I wound up walking to the ENT and then two miles uphill back home in 97 degree heat. In jeans.
At this point I’ll be really pissed if my nose gets in on the game. It is not supposed to. Back when I was pregnant with Young A, I had nasal congestion for weeks on end, and wound up seeing an ENT who diagnosed me with strep nose.
One year ago, September 8, the rug got pulled out from under me. The results to my CT scan of September 2014 were not what I was expecting. The crap had burrowed in deep. “The horses got out of the barn,” I remember Nurse Practitioner K saying to me, but immediately reassuring me that all would be well. (And, upon reflection, that my body was the barn.)
It’s my first metastaversary!!
Except for the extremely rough patch last November, when my treatment was suspended because it induced colitis, I feel that I really have nothing to complain about. I mean, I have complained, bitterly and repeatedly, mostly to J, and Mom, and lately to my therapist. (I could even complain right now: I have an earache.)
But here I am, a year after getting that crushing news, and… I’m alive and bad things are shrinking, and the new drug combo hasn’t even stopped my heart yet!
Would you believe that I was so much in denial about how much trouble I was in, I never actually asked for staging info for my cancer? It seemed to me that info was beside the point, a source of needless anxiety. Tonight, in an ill-advised and pointless Google search to find out all the different places that melanoma can metastasize to, because I was curious (and am now convinced I have bone mets because my wrist hurts), I learned a year after the fact that of course metastatic melanoma is stage 4. Those who know anything about cancer know that there ain’t no stage 5, unless you consider death a temporary waystation before you change forms.
There is plenty I am not satisfied with at the moment. Tomorrow I have to see at least two different doctors and possibly a third, all in order to manage medication side effects. The year, the stress, the medication, has me twenty pounds heavier than a year ago. My anti-seizure medication makes me totally exhausted. I’m hoping to quit that stuff soon.
But I think on this day (once I’m done with everything I have to do) it is necessary to pause, and yes, to celebrate. To life! In its many forms! And its many perplexing stages! And to acknowledge the many loved ones, friends, caregivers, and even random strangers, who helped me get here.
Here’s a song to accompany the post – (lyrics below to explain why I chose it):
Nine out of ten – Caetano Veloso
I walk down Portobello Road to the sound of reggae
The age of gold, yes the age of
The age of old
The age of gold
The age of music is past
I hear them talk as I walk
Yes, I hear them talk
I hear they say
“Expect the final blast”
I walk down Portobello Road to the sound of reggae
I’m alive and vivo muito vivo, vivo, vivo
Feel the sound of music banging in my belly
Know that one day I must die
I’m alive and vivo muito vivo, vivo, vivo
In the electric cinema or on the telly, telly, telly
Nine out of ten movie stars make me cry
And nine out of ten film stars make me cry
I’m wearing my contacts for the first time in like a whole month! Even though I have yet to see my eye doctor for a followup, I’m ready to stop with the steroid drops and more than ready to stop wearing glasses 24/7 (or 18.5/7, or whatever). However…
As soon as one of my “peripherals” gets better, another goes. I can’t hear very well (read: at all) out of my left ear right now. It’s basically swollen shut due to some long-standing eczema/crud that even predates cancer, and seems to come and go. I’ve never paid all that much attention, but my laser focus now that I’m on drugs that can cause any number of random side effects means I don’t let anything slide.
I saw the nurse practitioner at my regular doctor yesterday, and she prescribed some topical steroid cream. I’ve used it three times and I can’t tell if it’s working. J tried valiantly but in vain this morning to find me an ENT to see. I tried to find a weekend dermatologist – same result. Leave it to me to develop these problems not only on a weekend, but a holiday weekend. I talked to Nurse Practitioner K late yesterday afternoon – she didn’t have any particular advice for me, but her empathy came right through the phone and almost had me bawling.
I Doctor Googled the problem, which may or may not be “swimmer’s ear,” and found that I should probably be seeing a specialist about it. Though it isn’t clear if that’s a dermatologist or an ENT. And it may be that this dubious steroid cream may not even be reaching the spot it needs to. One thing I did learn from Googling is, I should really stop using q-tips.
We are heading out to lunch now at the house of one of Young A’s classmates. I hope that social interaction beyond the four of us driving each other slowly insane in a small apartment will be a good thing… even if I have to keep my earlobe tugged just so, so I can actually participate in the conversation. Maybe I can pass it off as a sort of tic, like people who bite their nails or twirl their hair. I’m not quite in the mood to explain a cruddy ear today.
On a positive note, thanks to a friend’s intervention, I think I have the perfect location for a writing retreat I want to take next month. Now I just need to get a good result to my MRI, and all systems will be go.