AND THE ANSWER IS....WHAT?

At 7:00 a.m., I’m rolling up my sleeve for the blood technician.  I’ve spent the night tossing and turning, and manage under two hours of solid sleep – and now I have a two hour wait to see the oncologist. Wendy and Heather show up in the waiting room at 8:45 and Terry, the oncology nurse herds us into a small examining room. 

The usual questions are asked and answered. Any numbness or tingling in my fingers or toes? Problems with nausea? Ringing or buzzing in my ear? Nausea? Any repeat of feeling light-headed and faint?

Dr. MacNeil arrives and checks the results of the blood work. Once again, my immune system is not good enough for chemo, which means that on Wednesday, I have to go in two hours before my scheduled chemo for another blood test. If that one is okay, round three begins.

She shows us the X-rays of my lungs. The tumour is getting smaller. Not a lot smaller, I think – but Wendy says there’s a big difference and the Doctor tells me it could have grown, in spite of the treatment – so she’s happy with results so far. As far as my crappy reaction to the last round of chemo and steroids, she tells me I’m in the 1% group of patients who react that badly. Tough luck. Down some Ativan and suck it up. She doesn’t say that. She explains that I will be hideously sick if I don’t take the meds. There’s a reason that nurses used to call Cisplaten, “Cisflatten.” It’s a vicious drug. 

The radiation oncologist, Dr. Bowes, calls me in the afternoon.  Radiation will not begin until the fourth round on December 21.  And then it will run for fifteen days, with the exceptions of holidays and weekends. Meanwhile, a cast of my back will be constructed and my chest will be tattooed so that I can lay in the cast in the exact same position for each session.  The tattoo will allow them to direct the laser to the precise spot. And by the way, I’ll need another cat scan.

 I mention that often radiation is used in palliative care and I ask, “The chemo kills the DNA of the cells, right? So exactly what is the radiation supposed to do.?  He agrees about the palliative care but explains that radiation also stops the cells from spreading. What? I mean isn’t the idea that chemo kills the tumour?

Apparently they hope so but there are no guarantees. Dr. Bowes explains that with neuroendocrine cancer, there is the possibility it’s already spread to other areas than the brain – but is not detectable on scans. That is why, he says, they are treating it as aggressively as possible – and why they will be following up with X-rays and scans on a regular basis. 

On the up side, he isn’t expecting I’ll have terrible side effects from the radiation on my chest. Fatigue, maybe a rash, trouble swallowing. “But we can address some of that if it happens,” he adds. He reminds me that after a break of a few weeks, I need to have another two weeks of radiation on my brain – just to make sure nothing of the tumour remains, lurking out of sight of the scanning equipment. 

So, to sum up: Christmas Day, I will be still be on steroids. However (Merry Christmas)…it will be the very last day I have to take them.  I should be finished treatment, sometime  in February. 

That is, I will be finished until the next X-ray, the next scan and the next and the next. 

What the hell, how much fun is life if don’t have to constantly wonder whether you’ll have one? 

If this doesn’t teach me the fine art of staying firmly in the present, nothing will!

QUESTIONS

By Thursday, I am beginning to lose my ability to stay in the present. Apprehension sets in. Routinely, Friday before Chemo, I have a chest X-ray. The following Monday, blood work at 7:00 a.m. and then an appointment with the medical oncologist. Trying not to think about it is like waving your arms to shoo off a flock of pigeons.  All you accomplish is sending your thoughts into panicky flight.

Did the tumor shrink? Did my immune system restore itself for enough for another round? And this time, the added stress of wondering what the next round will be like when they add daily radiation too.

Once bitten, twice shy. I am expecting to get sick this time…fatigue, despair, rage and the inability to sleep from the steroids…that nauseating feeling of toxicity from the chemo drugs. Am I going to lose the good days in-between when they add the radiation? The week when my energy comes back and I feel almost normal? And that would be the lesser evil – the greater being that the tumor is not responding, not getting smaller. 

Compulsively, I resort to medical sights on the internet, hoping for good news.  There is no good news to be found. Instead there are statistics: 10% of people with stage IV metastatic lung cancer make it to five years. Wendy says, “Okay – so picture a hundred people and the ten who survive and picture yourself in the 10%. She adds, “It isn’t a good idea to spend too much time researching it.” She’s right there.  Really, this is such a weird cancer that one medical site’s information conflicts with the next. 

So far, I haven’t seen a death sentence on my doctor’s face. First round, I remind myself, the tumor was shrinking. Ilga recalls that her impression was that adding radiation would be a sign that the doctors believe treatment is going well.  Me? I only remember the oncologist saying, “We’re going to start radiation.”

By Saturday, I begin to get very quiet. I continue working on the next beaded bottle I’m making. It’s absorbing and meditative…but underneath, there is a free-floating sense of anxiety. Part of me is detached, waiting, and anxious. 

Am I going through four or five months of this misery, only to have four or five months left after that? Or will I be in the lucky 10%? Right now, I cannot believe in my imminent death. But right now I have energy, the will to accomplish things, the impulse to create things. But the chemicals are coming and when that happens, I am someone else.  That “someone” cannot find anything to cheer about. That someone wonders if it’s futile to fight. I need my little stretch of time in-between treatments to return to myself and to regain optimism. Am I about to lose that when the radiation starts?

All questions. No answers.  But some deep part of myself is determined to survive. Knock me down and I get up. Knock me down again and I get up again. 

Remember that this is a long journey...times of doubt, times of feeling positive and strong. I don’t want pity from anyone but I do appreciate good thoughts and for those of you saying prayers, this would be a good time.

I’ll tell you the results of the tests next week.

BOOGIE WOOGIE COUNT-DOWN

I’m hugging the in-between days, attending to every single minute because treatment is next week. Chemo plus radiation – and the cursed steroids, which transform me into a raving psychotic.

Three days or so after the 2^nd round of treatment, sanity and energy start to return. For the first time since September, I have the impulse to make something.  I’m cheerful and busy, racing the clock, counting the days I have left. It’s frantic - I am trying to embrace everything in my universe at once.  I find myself loving the first snowfall of the year, delighting in the spring in my step. As of today, I have six days of relative normalcy left.  I’m setting up dates to see friends, returning phone calls and answering mail because if round 3 is anything like round two, I won’t be fit for human company a week from today.

 After the first round of chemo, Decadron caused an “exaggerated sense of well-being.” At that point, the chemo drugs hadn’t begun to accumulate. Having sailed through the first treatment in steroid-induced mania, I assumed I would sail through all the treatments nearly symptom-free, so when I began to feel poisoned, when I wept for an entire day and started asking myself if I had a reason to go on living, it was a surprise. A regular turd & turnip sandwich of a surprise.

Knowing what’s coming helps. No matter how bleak it feels, I can cling to the reality that it isn’t forever, that I’m not insane, that it’s all about chemicals. The radiation, I’m told, causes additional exhaustion. Some part of me is hoping that I’ll sleep through the next month or so. Wake me up when it’s over.

It cheers me enormously that my friend, Peter, has just finished treatment and has been declared cancer-free. I hope that I’ll get my turn, make it through the miserable parts and this will all become a memory. Like Peter, I will feel as "healthy as the butcher's dog."

Meanwhile, I'll try to follow Rumi's advice (“The Guest House) by welcoming what comes through my door, even if it is “a crowd of sorrows.” Now, I’m no Sufi mystic, so I may fall short of “welcoming”…but If  I aim that high, perhaps I can manage grudging acceptance and have the good grace to not answer phone calls until I’m fit for polite society again. 

Meanwhile,  at the top of the page is a visual representation of how wonderful it’s been to feel well.  It’s entitled: Boogie Woogie Bottle with Balls.

Cheers everyone.

CHERNOBYL HAPPY FACE

Really great things about chemo:

1. No matter how ditzy or forgetful you get, you can claim “chemo fog.” Legitimately, most of the time.

2. Cake. That your best friend brings when you whine, “I’m out of cake.”

3. Smoking. That you still really, really want to…but the smell alone would make you throw up.  (Subtitled: Cancer: the most successful smoking cessation plan in the world.)

4. Not shaving your legs. Or anything else.

5. Sleeping like a Neanderthal. A few hours here, a few hours there…in-between foraging for cake and reading at 4:00 a.m.

6. Steroids. An excellent experiment to determine what it would be like to be dangerously psychotic.

7. Tea. I used to hate tea. Two years ago, my friends, Mark & Audrey, gave me a tin of what they described as the best tea in the world – Kusmi Tea from Paris. “A Russian blend of China, Ceylon and India teas with scents of bergamot, orange and mandarin.”

Ahhhh. The tin (a beautiful treasure in itself) remained sealed until chemo – when my taste buds declared that coffee was a drink skimmed from stagnant tailing ponds. I now declare Kusmi Tea to be the crack cocaine of all teas.

8. Hats. Scarves. Turbans. Wigs. When you wear them, they no longer mess your hair up.

9. Feeling like you personify Chernobyl. Because when you have good days – by Goddess, you really appreciate them.

10. Old friends.

11. New friends.

12. Surprise friends.

13. Finding out that you are AMAZING at "Bejeweled." Practically a genius, in fact.

14. Having a sense of serious accomplishment when you do THREE loads of laundry AND do the dishes. ON THE SAME DAY! (Insert approving roar of crowd here.)

15. Realizing that there is a difference between chemical crazy and real crazy and remembering that eventually, you pee and sweat the chemicals out. And you might just outlive the chemo.

NO MOON IN MUDDY WATER

A Northern Wind

Every second the question comes,

How long will you stay dregs?

Rise. Do not keep stirring the heavy sediment.

Let murkiness settle.

Some torches, even when they burn with spirit,

give off more smoke than light.

No matter how hard you stare into muddy water,

you will not see the moon or sun.

A northern wind arrives that burnishes grief

and opens the sky.

The soul wants to walk out in that cleansing air

and not come back.

The soul is a stranger trying to find a home,

somewhere that is not a where.

Why keep on grazing on why?

Good falcon soul,

you have flown around foraging long enough.

Swing back now toward the emperor’s whistling.

-Rumi

I have been staring into muddy water and I have not seen the moon or sun.

I have tried to look past these days of treatment and have failed to detect any signs of a future.

The sediment of my old life surrounds me – on the walls, in vials of beads, in chests of drawers, paper-crawling across surfaces, stored in Rubbermaid bins, in closets, in boxes, in labeled containers, in every room. Flotsam, jetsam. I examine it constantly, hoping that purpose will emerge.

I have been looking for somewhere that is a “where.”

The left brain, newly relieved of it’s alien invader, wants lists, goals, plans. It is not comfortable with being bald, stripped of its constructed identities. It does not like this vulnerability at all. It wants a compass. It must be useful. Things must add up.It demands to know who I think I am.

I pick up Rumi’s poem and as I read, suddenly I slip past my ravenous ego to nowhere at all, where there is nothing to fear - and so much air.

******
 On rereading this, I understand it would be easy to misunderstand. When I say I have "failed to detect any signs of a future," I mean that I cannot see the shape of the future...what I will be doing once I'm past treatment. Apparently (and I understand this), some of you took it to mean that I had given up hope of living. Not yet! My apologies for being unclear. This blog actually describes a breakthrough and relief. Obviously I have to work on my writing.!

EGGS, AVOCADOS AND RAINDROPS

I’ve sorted through the past few days, trying to find something good to tell you.

I found this: Waking up at 4:40 a.m. on a rainy night and on the windows are a dazzle of raindrops.

The patter of rain.

Nothing else.

At 4:40 a.m., it doesn’t matter that my life is a shed skin.

At 4:40 a.m., I don’t have to ask, “What next?” or “How do I get through this?”

Another good thing: 3 days past steroids and I’m no longer suicidal or homicidal – or a little of both at once. I’m nearly ready to send letters of apology to those poor folks I wrote while in the grips of Decadron psychosis.

And how about this? Breakfast: 2 hard-boiled eggs, mashed avocado, and a slice of whole wheat toast. Eaten and, so far, digested without undue difficulty.

Doesn’t sound like much? Believe me, that’s practically a miracle at Lourdes.

And a brave effort this morning. A shower, a little makeup, the brown wig. I can almost stand to look in the mirror, almost believe that this will be over some day.

The pity-party is diminishing too.

Who knows, maybe even a walk at the Frog Pond Trail. Some long overdue thank you notes. 

Love to all...

POISON

I'd like to say I was prepared for the "cumulative effect" of chemo. I mean, I was familiar with the concept. And certainly I'd read the material on "chemo fog," but having pretty much sailed through round one, I thought that the hit would be harder by, say, the last round.

Friday, last day of round two, my apartment temperature is 90 degrees when I arrive home from treatment. The motor controlling the thermostat is stuck. Outside, there are near-hurricane winds and rain so heavy that it's flooded all the storm drains and roads. I open the balcony door and the windows and stuff towels around them, trying to let air in and keep the water out. My Superintendent calls the on-duty repair man, but makes a quick trip over to try for a temporary fix. She messes around by the rad and manages to get the stuck part moving again and then her phone rings. She answers and starts to cry. Her ex-daughter-in-law, mother to her grandkids, is dying. Right now. Of cancer. She apologizes profusely and leaves, promising another call to the repair man.

The repair man arrives about 30 minutes later - a nice, friendly guy who sets to work fiddling with the motor and declares that, while it's working, and will turn off and on, he doesn't like the look of it and will be back to replace it the following day. And then he mentions that he's waiting for a phone call because someone in his family is dying. Of cancer.

Wendy says, "Is this like when you get a red car and suddenly it seems like everyone has a red car?"

Maybe so, but just a little creepier, if you ask me.

A little later, I drug myself with Ativan and melatonin and manage to sneak five hours sleep past the steroids but Saturday, when I wake up, I don't feel anything like rested. In fact, I feel as thoroughly poisoned as I am. Etoposide, Cesplatin, Decadron, Zofran and let's no forget the $40 worth of laxatives I just bought to cope with the side effects of the side effects. I have Steroid Moon Face and I'm flushed red. My hair is beginning to fall out. I feel like walking death and if I let myself cry, I'm afraid I won't be able to stop, ever.

How to describe the feeling? I can't rest or sleep. I can't focus. Eating something may help or may make me feel worse. The poison in my body is working its way through my brain and emotions. I'm angry. I'm despairing. It's just ugly beyond belief.

So, for now, I'm no longer the poster girl for Doing-Well-Through-Chemo. It's hard to believe that the toxic stew killing this tumor isn't killing me, too.

It's Sunday now. I don't feel good. But I feel better than I did yesterday. I guess that's how it will go. Days so bad I don't want to imagine them, days that are a little better. Another two or three months of this to survive, somehow.

Today I'll bother with a head wrap and a little makeup. I'll try to get the floors mopped and the apartment tidied up, in the hope that pretending normalcy will help. I still have two Decadron left to take, but I'll try to be grateful that, at least, I don't have to swallow anymore of them until the next round and I'll start to feel just a bit more like myself in another few days.
 
Tell you, I've always been considered a "survivor"...but this is adding a whole new dimension I'd like to have never explored.

HALLWAYS

I wonder if a day-long crying jag on Sunday has had anything to do with my low immune system on Monday because, by Wednesday’s blood test, I’ve crawled out of the what-is-so-great-about-hanging-around-in-this-life pit and I’m well into the normal range again. Chemo can proceed on schedule and I can stop scaring the crap out of my friends.

This time, it’s the small chemo room. The one with only three chairs. Across from me is a woman of 50. She’s bald and not wearing a head cover. Her face is pretty, but round and flushed red from steroids. We pass about an hour of our time talking. She has cancer in her lungs and lymph nodes and her treatment is simultaneous chemo and radiation. Her name is Joyce.

We chat about our former jobs, about how one or two sentences from a doctor can turn your life upside down in the space of a few seconds. I wonder if anyone is ever really expecting such a diagnosis or if all of us go into shock. Joyce says she spent several months in complete denial. But denial has a short shelf-life, once you head into treatment.

“It’s the perfect Zen trap,” I tell her, “You are stuck in the present whether you want to be or not, with no idea of what happens next…no idea when the hospital will book or change treatment, when your next appointment will be, when you’ll be sick or feeling well, when you’ll feel positive or sink into the abyss. Whether you’ll get well or die.”

I tell her about my black Sunday and she tells me that she lives in a flat with a big old fashioned bathtub. Normally, it’s where she goes to soak and spoil herself – but it’s also where she does her crying. “It happens to all of us,” she says, “out of the blue like that.”

“You know that old saying?...” she asks, “When one door closes, another door opens?”

“Yeah.” She grins.

 “I’m standing in the hallway.” I start to laugh.

“Oh yeah! Me too.”

That’s as close as I can come to answering the questions people ask. What are you doing with your time? Are you doing any bead work? Are you making jewelry?

I’m standing in the hallway. At some point, a door will open. Where it will lead, I have no idea.

HERE I AM FLOATING IN MY TIN CAN

Sunday morning:
Next to the coffee table - a small wastebasket overflowing with balled-up tissues. On the table, an assortment of empty mugs and water glasses, a flat of Nicotine gum, my inhaler and nasal spray and the latest issue of a bead work magazine – which looks, from a short perusal, exactly like every issue of every other bead work magazine I’ve ever seen.

In the kitchen, dishes are floating in cold soapy water. The counters need wiping.

Thursday night, when the cold hits in earnest, my temperature is 101.5F - a degree and a half past the point where I am supposed to report directly to the hospital and present the plasticized yellow sheet of procedures from the Cancer Center. The sheet states that I must be seen in under two hours. A mere two hour wait is light-speed for the emergency room.  But my nose is running and I feel like I'm trying to swallow razor blades. My chest burns when I cough.

I consider the dire warnings about raised temperatures and infection but my body feels like it's filled with cement. And it’s always cold in the hospital and I have chills. I can’t help believing that sitting in emergency for two hours will actually kill me. All I want to do is crawl under the covers and sleep. In the morning then – if my temperature is still high in the morning, I’ll go. First thing. But right now, I’m swallowing two Adivan and two Melatonin and crawling into bed.

Friday morning, the thermometer reads 99.1F. Although I require a tissue to be propped under my nose at all times, my throat and chest don’t hurt. I congratulate myself on following my own instincts thereby avoiding 5 or 6 hours of hospital emergency hell.

And I taxi down to the Dixon Center for a scheduled chest X-ray, then come straight home.

The plan is: Get Well By Monday Morning. The plan is to have the medical oncologist not lecture me for failing to report to emergency – and most of all not to have my chemo sessions delayed. I stop answering mail and the phone. I leave the computer turned off. I read and sleep and live on Ensure. My temperature gradually sinks down to my normal of 97.5F.

People ask me what I’m doing with my time, what my plans are. The only plan I have is to get through treatment, preferably alive. And treatment could go on until Spring – not including the time to recover from chemotherapy and radiation. I don’t make my schedule – the hospital does and they specialize in short notice. So I’m here in this state of suspended animation, floating. My job right now is to beat a rhino virus with the disadvantage of an impaired immune system. The next job is getting to the hospital on Monday, 7:30 a.m. for blood work, so the doctor can make an assessment at 9:00 a.m. I don’t know how tired I will be on any given day, or how sick, or for how long. I don’t know if chemo will work, or if I’ll need surgery. It’s the perfect Zen setup. I cannot attach to anything but the present.

It's as if I’m living in a parallel universe and sometimes, that makes it very hard to talk to people.