Wednesday, December 07, 2011

A prayer

Learned this week that I'm still sick. Really sick.

Tried to get back to life a bit and go to art class this week but just couldn't manage it. Andrea's studio, in an important and historic 16th century building close to the Piazza del Popolo is also at the bottom of a kind of transit sink hole. The easiest and fastest way to get there is to take the train to San Pietro station and either hoof it across the Big Piazza and cross the river on the Ponte Cavour, or you can take a bus from the stazione down the hill, past the big dome and over the river and walk through the little windey streets from the bus loop near the Angel bridge.

Either way its a good brisk 20 or 30 minute walk, and invariably no matter how cool the weather is I am drenched with sweat and out of breath by the time I get there. I usually have a little ten-minute sit-down on the studio terrace and a glass of water before starting and am OK, but this Monday I just couldn't get untired. But since Andrea is going away for a few months and this will be the last chance I get for a while, I thought it would be silly to just turn around and go home again.

Besides, I'd brought my computer with me and had the ambition to go to the office and get some work done after class. It's been so long since I've had a normal day, I just really wanted a smidgen of my regular life. But it didn't work out.

In class, we stand in front of the easel about two arms lengths away and the technique involves taking a measurement from that distance and then walking the step or two forward to make the mark on the paper. Classes are three hours and it can be pretty tiring. By the end of it, I usually am pretty happy to sit down at my desk for the rest of the day.

But this week it really became clear how much the chemo has taken out of me. It looks too as if the poison drugs have damaged my ovaries, and I've been having rather severe symptoms of premature menopause. This means a constant undulation: hot/cold/hot/cold/hot/cold. Overwhelming heat, sweat pouring off me, red faced and panting and five minutes later shivering and chilled. This amusing routine going on about three or four times an hour, 24 hours a day. The preamble of nausea, dizziness and heart palpitations lets me know when one is coming on. Stress brings it on and as you may imagine, it makes it rather harder than usual to concentrate.

The neuropathy is aggravated by being tired and by the end of two hours of class, my feet were on fire, with pain spreading up my legs. The pain of neuropathy is multifaceted, and a big part of it is the feeling that one's toes and fingers are swelling up and getting ready to explode. When it's bad, touching anything hard, like turning a key in a lock or winding a clock, feels like your fingers have a "funny bone" in them, all the nerves cringe together as though getting an electric shock. Some days holding the pencil is a bit of work by itself.

Despite all this, and despite it making me a little cranky and ill-humoured, I got to the end of class, but was a bit of a wreck. After, I had to do a couple of little chores, cutting up some large sheets of paper so I could get them home in my folder. But before doing that, I ran out to the farmacia to buy some paracetomol, known in the US as extra strength Tylenol, to back up the drugs that were obviously not up to the task that day. We're still working on adjusting the new pain meds, with too much turning me into a zombie and too little leaving me in pain by mid afternoon. It works pretty well if I'm not doing too much in the day. And some days, for no particular reason the whole thing just flares up. The doctor said if the meds stop working too soon, I can back them up with paracetomol, but it doesn't work terribly well.

When I was getting ready to go home, Andrea said, "So, on a scale of one to ten, how much pain are you in?" About six, maybe six and a half. Not screaming agony by any means, but bad enough to make everything no fun at all.

Bit of a mess, is the long and the short of it and this week it all kind of came to a head.

So Monday afternoon, I was done in by two o'clock and just had to go home. Hot/cold flashes every fifteen minutes notwithstanding, I was falling asleep on the train and went to bed more or less instantly after getting home. On Tuesday morning, it really hit me just how sick I'd got. Up only for a few hours in the morning for a cup of tea; back to bed by two-thirty. Up for a while in the evening, and me n' Vick watched the Fellowship of the Ring. Had some dinner and went back to bed. When you're spaced out and sick, in pain and on narcotic meds, the day just sort of floats by in a kind of weird droopy haze.

A day in bed, though, did me a world of good and this morning I had enough perk to go to the doctor and report that things are really not going terribly well. The good news is that my local GP is really terrific and has been a huge support in all this awfulness. He is setting me up with an oncologist who speaks English and will be able to tell me what's going on. I can get the Gemelli to give him my medical records and he can explain things and keep a closer eye on me and my doings than the staff at the hospital can. Obviously I should have done this months ago, but I was mostly expecting to be starting to recover by now. I'm only just now learning that chemo often doesn't work that way, new symptoms and side effects can appear months and sometimes even years after the last cycle is over. Something I'd have known about if the Gemelli doctors were as interested in keeping me informed as they are in doctoring me... it's been a bit of a bone of contention so far.

My appointment this morning did a lot to put my mind at ease. Things are going to get worked out. The things that are happening now are debilitating and awful, but not life threatening and can be treated successfully. They're going to go away and be under control. Things are going to get worked out.

I left the doctor's office and walked out into the late morning sunshine. In early December it's a beautiful warm, breezy autumnal day, absolutely perfect. Cool air, warm sun, nice little breeze off the sea bringing in sweet damp that's just like home. The autumn rains that started this year quite late, in November, have given us our annual "second spring," with all the grass that goes brown and sere in our ferocious summers, coming up again green and soft, flowers nodding over the tops of garden walls, happy children kicking the soccer ball around in the school yard.

I came out of the office and was still woozy and wobbly, but quite a bit mended and didn't want to go straight home. I took a slow walk up the Via Aurelia, the Roman road that runs through the centro of S. Marinella, and ended up going down to the castle and the marina. There's a promontory there, where, on a clear day, with your back to the old Odescalchi castle, you can see nearly all the way down to Rome, with the other castle at Santa Severa gleaming in the sun, a stern old fortress warding off marauding Saracen pirates.

Behind the castle, that is built on top of the foundations of a Roman senator's country villa, there is another little beach, hidden from the great running of the Rome tourists in the summer, with patches of black volcanic sand, big bulges of sandstone coming out of the ground all weathered into undulating Art Nouveau shapes, and logs to lean your back against. Just like home. This beach is on a little cove and is sheltered from the wind and only a few beautiful white neoclassical villas nestling in the shrubbery and trees on the hill.

I sat down on the sand and turned my face into the breeze and just breathed. It felt like the first time in days.

I'm scheduled to have surgery next week. I am hoping to get a consultation with this new oncologist before then. I know the Gemelli doctors know what they're doing and I'm pretty confident that the surgery will be the end of the cancer. I am also growing in confidence that the difficulties the surgery will create can be dealt with.

Things are pretty hopeful, but I've been terribly afraid. Cancer is unpredictable, and no one can possibly say for sure if all this is going to work. The news about the micrometastases in the margins after the last surgery has really shaken me. I'm deeply frightened by the thought that this might mean the cancer is anywhere and there is no way to tell until it is too late.

I've been praying for a lot of things but, and this might surprise you, I have yet to simply ask to be delivered from cancer. For the treatment to work.

I walked along this little hidden beach and finally knew that I really wanted to live. At least for a few more years.

"Lord, I'd just like to ask if I can please get past this and live for a while longer. I am OK with it if you have other plans, but I'd just like to get it out there.

"Things are really nice right now, and maybe for the first time. I've got such good work, and such nice friends and I've finally figured out for the most part how to get on in life. And honestly, I'd really just like to enjoy it for a bit, if that's OK.

"I think I can handle the long term consequences of the surgery and still have a bit of a nice life. I don't even mind if things are a little reduced in scale from now on. I can deal with living a little smaller and a little slower. But I think I've got a chance to be happy for a while and I'd like to try it."

I've been getting a lot of messages via email and Facebook in response to my last few Meaning of Life posts and I'd like to let y'all know that it has actually been really helpful, so thanks. I know that a great many of you have been praying (some have even paid money to get large numbers of other people to pray too, entire convents of nuns) so I thought I'd let you know that I'm getting to a sort of peace with the whole thing.

Don't get me wrong; I certainly have my little screeching moments of mindless panic, but they're fewer, shorter and easier to stop now, even without the application of the frying pan to the head. It might surprise some to know that the whole cancer experience has in many ways been beneficial. As a news writer, I know how important a deadline can be to your productivity. The saints and famous spiritual writers always say the same thing: keep your eye fixed on the reality of death. And cancer certainly has a way of making that impossible to avoid.

I'm finding my way through it. Maybe in a somewhat muddled and inefficient way, but I'm getting there and it is in no small part due to the support I've had from friends, readers and colleagues.





berenike said...

* <-- you (star, not asterisk).

Mrs McLean said...

Reading! Hope all goes as well as it can in surgery.

Anonymous said...


As I've shared with you, my ordeal has been a little different from yours (being I'm not a girl), but other than that, the parallels are almost complete.

Never underestimate the great good you're doing here for those of us who belong to that Exclusive Club of the Big C. So many of us either don't possess the talent, or are incapable because of the pain of expressing what this horrible ordeal has done to our lives, especially from a Catholic perspective.

Thanks again not just on my own behalf, but on behalf of everyone else out there who like you and I have known the Great Crummyness, but who have had the good fortune to read your words. At the cost of what I'm sure is great pain, you've given voice to our hearts, and articulated the commingled fear and joy that's in them.

For my part, I hope all goes well with your surgery, and know you remain in my prayers. Every single one of them.

Teresa B. said...

I know relatives and friends who have had various forms of cancer and no one likes to say anything about their struggles.
Reading through your posts have made me realize just how frightening, exhausting and confusing this time is for you and for those I know who have had cancer or are still going through treatments.
My 13 yr old daughter asks how Miss White the artist is doing when we pray for you each morning and evening.
We will remember you even moreso next week during your surgery and recovery.
We will also God to relieve you from your fear.
Pax Christi,
Teresa B.

Anonymous said...

"I have yet to simply ask to be delivered from cancer. For the treatment to work. "

We are asking, though.


Hilary Jane Margaret White said...

I don't know, Jon, you sound pretty articulate to me. Thanks. These things help more than you know.

It's may seem odd, but I really am a deeply selfish person. I write these things because it helps me to write, an instinct I've had all my life. That it may help others is something that rarely crosses my mind.

DP said...

Prayers continue.

Anonymous said...

Cancer is as unfair as hell. I'll be praying for your surgery, your few more years and little whiles.