It’s not death, it’s the dying.

Still Life Pharmacy

Still Life Pharmacy

In what may be the unkindest cut of all, having cancer doesn’t give you a pass on all the other ailments of (in my case) middle age: GERD, high cholesterol, high blood pressure, joint pain… I am dying of cancer but I want to be as comfortable as possible until then and I don’t want a heart attack or a stroke to put a cramp in my style while I’m waiting for the cancer to kill me. Put all this together and it spells lots of medicine.

To the left here you can see some of what I take every day. Unlike the United States, where patients receive their pills in a little vialwith a label on it that, among other information, tells you how to take them, here in Jerusalem we get our medicine in boxes of bubble packs. There is no label on the box, especially when it’s something you take on a regular basis.

Now, I’m all in favor of taking responsibility for my health, but today I had a very scary experience. I came up face-to-face with the decline of my intellect and the dependence on others that is approaching as I move steadily toward the end of my life. It was a little thing, maybe, but incredibly significant to me and I took it hard.

The medicines for the coming month were all in front of me on the table and so was the partitioned case for me to put out my week’s meds. A looked at the case and I looked at the boxes and bubble packs and… suddenly went blank. Which one is in the morning and which is at night? Is this the one I take two of or is it the half-tablet? Wasn’t there something that isn’t every day or was that only because of the tests? What do I do with all this?

I started to cry. Not so much because of this moment of confusion, but because I was looking my future in the eye. The future of being unable to care for myself. The future of losing control of everything (maybe even my sphincters). The future of someone else deciding what I would take for pain and what I would eat and when I would have a wash and what books I would listen to – because I would either be unable to do it for myself or – even worse – would be deemed by others to be unable.

I was looking at the end of my life, not in three decades or more, but in just a couple of years. (I like to say I have two to five years left, but I pulled that number out of the air.) The end of my life.

Yes, yes, we are all going to die, and no one knows when. Take that as read. I get it. Yes, a rocket could fall on me or a car could hit me or my computer could electrocute me. I get it. But that is all very unlikely. It is not only likely but quite certain (barring an act of God, which by their nature are very rare) that I will die of metastatic disease and I will die of it very soon.

This might be one reason that chemo brain upsets me so much. I can manage the actual deficits with the little tricks and methods I spent my nursing career teaching patients. But it is almost a dramatic foreshadowing of what awaits me just a little ways down the road.

I’m fine with dying. I have very strong beliefs and death doesn’t frighten me. I’m even looking forward to “seeing” some dearly loved people who have died before me. But that whole “dying” thing – the weeks (months?) before death? No. Do not want.

I find myself with a new understanding of Dylan Thomas’s famous poem. Maybe the rage is not at “the good night”, death, but at “the dying of the light” – the decline of one’s faculties.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay, 
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Yet Another New Normal, Redux

I was thinking about anxiety attacks today. I had one on Sunday in the taxi on the way to the neurologist. I was sick to my stomach, sweating and my chest felt painfully tight. I hadn’t been expecting an anxiety attack, so I didn’t recognize it at first; I thought I was car sick. I opened the window a bit (even though it was raining hard) and slowly breathed in the cool, fresh air. As I slowed my breathing I realized that I was not car sick, but anxious.

The thing is, I didn’t change anything I was doing. I kept slowly breathing in the cool fresh air and as my breathing calmed, so did my emotions. Our minds and bodies are so closely intertwined – I’m always awed by how that works. I kept breathing slowly, slowly and allowed my body to relax. In a short time, I felt much better.

So I was thinking about that today. I was thinking about how dealing calmly with the anxiety attack (is that contradictory?) kept it short and undramatic.  There was something in there about acceptance, too. I’ve written about my concept of acceptance before:

Next to humor (and I make some pretty awful jokes), acceptance is the coping technique I do my best to cultivate. Accepting an unpleasant or bad situation – war or abuse or cancer, for instance – doesn’t mean that I endorse it or like it. It just means that I have looked at reality and noticed that it is real. Not accepting reality is fairly insane. I can’t even work to change something until I have noticed and accepted that it is real.

Last night I was feeling sad and upset. There’s a lot going on at the moment and I won’t go into all of it.(*) The part that is relevant to this blog is the part about my neurological status. As I tweeted(**) on Sunday, the neurologist discharged me from follow-up. This is good, in that she doesn’t expect any unpleasant developments in the short term. It is bad, in that she cannot treat the deficits I have.

Those deficits are the “new normal” in the post title. I wrote about them in my post Chemo Brain. Some of them are more serious than others. Not being able to find words on demand, even in my mother tongue, means that I can no longer do simultaneous (or even consecutive) interpreting. It means that I cannot accept rush jobs in textual translation, either. Since I was a professional translator, this is a problem.

I forget things. This is easier to manage, especially with the wonders of modern technology. I use notes and calendars and reminders and alerts and alarms and suchlike to keep my life going.

My hands shake, so I cannot do the fine lacemaking I used to enjoy so much. I’m managing that by taking up knitting again and trying my hand(s) at knitted lace, since the finest wools for lace knitting are much coarser than the fine threads I used for bobbin lace.

I lose my balance, so I stay off ladders and have put up a grip rail in the shower and next to the toilet. I lose track of time, so I keep my medicines in a pill organizer.

And so on.

I’m “managing” the deficits and using the skills I honed back when I was a nurse to find and develop strategies for independence. I hate it that I have to do that; I am grateful that I am able to.

When I wrote my first “new normal” post, I was sort of assessing the changes to my baseline functioning since my diagnosis. Today’s post is more ponctuel, in the French sense, dealing with this particular point in time. (Not showing off this time; I just can’t think of an appropriate word in English.)

My challenge now is to apply the same acceptance to these cognitive deficits that I applied to the anxiety attack. They are present in reality. My goal is to accept them calmly and deal with them appropriately and get on with my life.


* As self-revealing as I am in this blog, there are still some things I won’t tell you, Internet. (Boundaries. I have ’em.)

** If you want to follow me on Twitter, there’s a button in the sidebar or you can just follow @knotellin.

At least my unicorn isn’t pregnant

I found another tarantula in my kitchen this morning.

That ranks high on the list of ideas I never thought I’d ever have occasion to put into words. In fact, until recently it would have been a close contender for number one on that list, along with My unicorn is pregnant and No thanks; I’m tired of chocolate. Let’s just have a nice green salad for dessert.

This might be a good place to mention the slugs. Slugs have been slithering out from wherever they were and sliming their way onto my kitchen counter. I have developed an excellent system for relocating them because I cannot bring myself to even think of cleaning up whatever might be left after throwing salt on them.

Then of course, there are the teeny-tiny black hopping insects that jump on to me if I go and stand next to the front garden for more than a moment. Flealike, they are about half the size of period (full stop) in Times New Roman 11. (And I think that with that we can agree that I have established my geek cred.) They are the reason the grocery store called me today to verify that I had really asked for that many cans of bug spray in my online order.

As I’ve written before, I am sure that creepy crawlies have their place in the order of created things – but that place is not in my house.

Anyway, back to Chaetopelma olivaceum, the Israeli Black Tarantula, sometimes called C. gracile. The one I found this morning was relatively small, about a third the size of a grown one. That is terrifying. Terrifying! Why? Because it’s a baby. There is a mama around (unless I killed her earlier this month) and probably siblings. I don’t know how many eggs a mommy tarantula deposits into her egg sac and a Google search creeped me out before I found a definitive answer, but it looks like the minimum is fifty.

Fifty baby tarantulas.

So, yeah. Slugs aren’t looking so bad right at the moment.

In my saner moments, I am sure that I don’t have fifty tarantulas in the house or garden because even with chemo brain, I’m pretty sure I’d have noticed.  But still.

Now, one thing that people who know me will tell you is that I’m kind of nuts about a clean house. Being unable to keep things up to my standards is an ongoing annoyance with my poor health. So last year’s cockroach invasion was as insulting as it was annoying. But all you have to do with cockroaches – even though the ones we have here are about the size of your thumb – is spray.

Slugs require a bit more attention, in terms of relocating them. (Or cleaning up salty, goopy ex-slugs.) So I had planned to ask the Young Man who helps me around the house to pull out the washing machine from under the kitchen counter because I suspect the slugs are entering from behind it. Then we could plug the holes and pour kilos of salt behind the machine before putting it back.

Finding a juvenile tarantula in my kitchen calls for a change in plan, however. Slugs are gross, but Israeli black tarantulas are poisonous. And the idea of a nursery of them in some corner of my kitchen does not bear thinking about. So when the Young Man comes tomorrow we are going to empty out the kitchen cupboards v-e-r-y slowly and carefully and assess the situation. Then we’ll wash everything down with soap, water and bleach and spray poisonous chemicals in all the nooks and crannies.

Or call in the military. One or the other.

But right now I’m going to go take a long, hot shower because this is the itchiest post I have ever written.

Chemo Brain

Chemo Brain. So many of us (maybe even most of us) have gone through it, and some of us – like me – never get rid of it. The words that used to be there but aren’t any more. The inability to give clear directions over a route you know well or to negotiate obstacles without bumping into them. Forgetfulness. Even trouble gluing together a broken plate.

I have been telling my doctors about my problems for years. They don’t pay attention. The most troubling issue to me is not being able to find words. I am a writer and translator; words are my tools. If I can’t find my tools I can’t work. But the doctors don’t take me seriously. One friend has suggested that because I use words professionally my baseline function may be such that a deficit is simply not recognized in the casual attention of a twenty minute oncology appointment or seven minutes with the GP.

The results of what is described as a “large meta-analysis” were published in a September 4th press release by the Moffitt Cancer Center and reported in the print and online media. I’ve waited two weeks to write about it because I was so annoyed. I was annoyed because I’ve been told that I was imagining the deficits or that they are just part of aging (I am fifty-seven, for goodness sake, not eighty-seven!) or some sort of middle-aged lady hypochondria (“To be expected, dear, after what you’ve been through”). No one took me seriously enough to refer me to neuropsychological testing. The condescending responses to my complaints were sufficient to stop me from pushing the point or from pursuing testing through my own connections. My name is Knot Telling and I am a wimp.

According to the press release,

“Our analysis indicated that patients previously treated with chemotherapy performed significantly worse on tests of verbal ability than individuals without cancer,” noted co-author Paul B. Jacobsen, Moffitt senior member and associate center director of Population Sciences. “In addition, patients treated with chemotherapy performed significantly worse on tests of visuospatial ability than patients who had not had chemotherapy.”

“Breast cancer patients treated with chemotherapy who have subsequent cognitive deficits should be referred to a neuropsychologist for evaluation and management of the deficits,” Jim said. “Management usually involves developing an awareness of the situations in which their cognitive difficulties are likely to arise so that they can come up with strategies to compensate. Research shows that such strategies can make a big difference in daily life when cognitive difficulties do arise.”

So it looks as though even if I had been taken seriously and given an official diagnosis, there would not have been any real change. I would still be dependent on management strategies, probably pretty much the same ones I use now. It is painful, though. I am diminished. This is more of the “we had to poison you in order to heal you” story that is cancer treatment as I experience it. Would it have been less painful if I had been advised of this possibility in advance?

To tell the truth, I’m not sure it would.

It’s not all about cancer – except when it is

Full disclosure. I live with cancer. I hate that I live with cancer. Cancer and I may have reached a delicately balanced modus vivendi, but cancer still scares me.

I have mets (metastasis, secondary tumors) in my bones, but the last chemo series greatly reduced them and I am pretty comfortable at the moment. Bone metastasis doesn’t scare me that much, probably because 1) pain control is available and effective and 2) I already have it, so I know what it’s like. What terrifies me is the possiblity of it spreading to the brain.

I am so afraid that I will lose my independence, that I’ll lose my sense of self, that I’ll need to be “managed” and “cared for” and “protected”. The possibility terrifies me.

Most of the time, the terror  subsides to a low-level, fairly constant background anxiety. If I forget my keys, I worry about my memory. If I forget someone’s name, don’t recognize a face, if I have trouble with an arithmetical calculation. If I can’t think of a word or the name of something I am looking at, I panic. And if I notice that I am unusually joyful or unusually angry or unusually into shopping and spending money, or unusually fixated on an idea or an activity… I go ballistic. Is my mind going? Has the disease reached my brain? Am I on my way to being tied into a wheelchair and parked in front of some dayroom television?

Yes, I know this is over the top. I slow my breathing, focus on tangible, material things. Here and now, I feel my breathing. Here and now I feel the chair under me. Here and now I see my magnificent peace lily. Its large leaves and pale flowers calm me. Here and now, I am aware, awake, competent. And I calm myself.

Sometimes I feel like going to the oncologist and asking for a brain scan because of some new behavior that might indicate a personality change that could be a symptom of a tumor in one or another part of my brain. But I feel like an idiot, so I don’t ask. These sporadic fears and anxieties embarrass me.  I take them as a sign that the cancer is winning this emotional war of attrition. (You see? Sometimes even I use the bellicose metaphors in talking about cancer.)

I use Occam’s razor a lot. Remember that? The idea is that if there are two possible reasons for something, the simpler reason is the more probable. If I am suddenly obsessed by shopping, spending money, thinking about buying things, fantasizing about what I would do with my new purchases (and this is out of character for me), that might be a tumor-related personality change. It might also be a reaction to anxiety. The simpler and more common explanation is that I am anxious around certain issues in my life. God knows I have plenty of that – and some of it doesn’t even have to do with cancer.

So I take measures to reduce my anxiety, and the shopping obsession gets back to reasonable proportions, thus proving the anxiety theory. And I can relax again until the next time.