It’s not Brain Surgery

Well actually, it might be.

Pseudo progression or progression could be causing some of my current symptoms which include some uncoordination on my left side, fatigue, and balance issues caused by fluid in my brain pressing on the wrong spots. The doctor team is working on a proposed plan and surgery will be considered. Just poke a hole and drain out the fluid to relieve the symptoms. At the same time they can figure out if the pressure is caused by tumor growth or accumulation of dead cells by pathological analysis. And maybe resect  (remove) much of the tumor at the same time. I don’t like he idea of surgery. Cutting into the skull just seems WRONG. I mean come on. Let’s just cut the head off and stick it in a jar with computer controlled animatics to give the illusion of me. I’m just an illusion anyway. Conditions just happen to collude for me to manifest In any case, no sense worrying over things I can’t control.

I am glad I have Annie here to help formulate all the right questions about the implications of alternative plans. If she could do the surgery, I’d pick her for the job. Now the doctors here are some of the best in the country and they know lots of stuff and how to do it. They just seem to be a bit slow in communication.

On the bright side, It looks like nothing needs to happen fast and I might actually go home tonight to start the next wait and see period.

The uncertainty of when is worse than that of what at this point. After all, I’ve already had brain  surgery for the original biopsy. And it was kind of cool.

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Posted in I have no earthly idea | 5 Comments

On Decay and Pseudo Progression

Things die. What we call death is a state that obtains when the conditions are not right for a thing to manifest. A tree falls. Does it make a sound? Yes.There’s always something there to “hear” it. It creates a sensation.  Is it dead? It lands on the moist woodland floor and leaves continue to get the moisture to grow. Its broken branches, its wrenched up roots expose its woody middle, and create new conditions for  life to manifest.The wound is open to other life— mealy bugs, mold, mildew, mushrooms. And with that internal decay, the tree bulks up, fattens, gets bigger, i.e. it’s growing, or appears to be, but it’s a growth leading into becoming food.

Where was I before the wall of a uterus created a place for the egg that would become the physical me?

I accept without regret the mouldering tree. I like the smell of decay in the forest floor. I can’t say the same for the refrigerator where my neglect creates a cool array of soft white tendrils and islands of green:the accidental terrarium in my refrigerator.It’s easy to see decay as growth. The rotting trunk expands as fungal organisms grow. A dead fish floats on the surface of a pond because it’s inside decays from the inside out. An interior wound, puncture or disdaw is just enough to manifest life sealed from oxygen: anaerobic digestion creates buoyant methane that expands the fish and now lighter than the water it bobs as its peritonitis continues.

Cancer is not decay in this sense. It’s it’s the opposite: exuberant growth. It has no reason but to grow. It creates the conditions to support it’s own existence. Inflammation at the site of the infection brings blood to feed the cancer’s growth. The original vampire.

But cancer dies too. Maybe only as it takes down its host, yes, but still it dies, moldering with the host, dust to dust . My cancer will also die, and there are indications that it already is.

Psuedoprogression.

My last MRI showed progression — growth, but to my radiation oncologist it had signs of psuedoprogression.  Like a dead tree, appearing to grow only because of the detritus of death, a false growth.

Apparent or real growth?

Time for another MRI, with a different wrinkle: MRI with perfusion, a dye injected prior to the scan that will show the flow of blood to the cancer and help confirm or refute the diagnosis.

Once Again. Wait and see. And we hope to know more soon. The choices will be just wait and take time to think

Posted in I have no earthly idea, No. 03 – MRIs Ad infinitum | 4 Comments

Madrid is the Best Revenge

Well ok, maybe not the best. But it is a delightful city and we are having a lovely time here even if there’s quite a bit of rain. Most of it we’ve avoided by being inside. Isn’t that a novel concept? The other nice thing about museums is the art. The Prado is really spectacular.  A great mix of Renaissance, Baroque, and that really old stuff. We were going to enjoy standing in front of Las Meninas when a pesky guard actually blocked our view to force us out of the museum. It was closing time, but still.

Guernica may have been over-hyped by friends who’ve seen it, but I wasn’t terribly impressed. It didn’t help that the imaging equipment in the gallery made it look as if it was under construction. We’ll take another look soon. Reina Sophia is just across the street from our very nice AirBnB, a great resource for cheap accommodations anywhere.

I am feeling great. My tiny focal seizures continue to occur every three or four days, but have little to no impact on my happiness or performance. A recent MRI came through exactly the same as all the others: no change. The radiation wasn’t expected to have any visible positive effect, but statistically speaking, it will “improve my mortality.” The negatives have been minor, my hair is growing back and anyway, I’m enjoying having it short.

All in all, life is good. So, hasta la vista, niños! Voveré con un intérprete.

Posted in No. 01 – Get on with Life, No. 03 – MRIs Ad infinitum, No. 10 – Have Fun | 8 Comments

NYDP 2012

It’s been just about exactly a year. And as usual it’s gone by so fast. But it’s been a quite wonderful year. The year I woke up. The year I decided to quit wasting time, to get on with life, to tell the truth and to have fun. And now the next big thing NYDP 2012. See you soon!

Posted in I have no earthly idea | 5 Comments

Shave and a Hair Cut…

Well no shave. But the haircut is real, if a bit unorthodox. For the past six weeks more or less, I’ve been getting radiation therapy.

“Therapy”. It sounds so comforting….If you squint at  the word almost seems to whisper, “there…there…” And so many choices.

  • Hydrotherapy. Aahhh, a nice warm tank of water up to your neck. The floatyness of your arms. Soft jets of water swirling around your tight muscles.
  • Massage therapy, a talented masseuse, your oiled skin generating heat against his/her hand. (Whoa there. Slow down.)
  • Art therapy, focus, color, textured paper or squishy clay, color, play. When was the last time you actually played? So diverting, so therapeutic.
  • Aromatherapy. Soft and evocative scents of Citrus, sage, clove, oregano, lavender. You can smell them now, can’t you? Drying laundry…??? Annie’s favorite smell. Bottle it and sell it.

Radiation therapy. No choice here short of refusing treatment. And heck, it’s the most comforting of all. Lying on a platen—no cushion. Before they slip on the mesh polyester mask that presses into my skin and holds my forehead tight to my polycarbonate pillow, I put on a little lip goo. I check to make sure there’s no sneeze coming on. I rub my face all over in the hope that that one little spot at the end of my nose won’t start to itch. Then the mask. “Ready?” Snap, snap, snap, snap, snap. “Ok, Mr. Pierce. We’ll be right across the hall and can see you on the camera. Shake your legs in the air if you need anything. Seriously. They may as well say “Pretend you’re having a seizure, and we’ll come running.” Then they close the eight inch thick door that closes me into the “radiation theater”, and the business starts. Zap, zap, zap, zap, zap, zap and I’m free, free, free at last. For the day. But there’s the rest of the week. M T W TH F I’m walking into the hospital’s radiology basement at 7:45 am. OMG that’s early. At least for me.

But truly, I exaggerate. Annie gets up with me at 6:15. She makes me breakfast. Yes, breakfast. She is very very good to me. The techs are relaxed and clearly expert. They give me a nice warm blanket. They turn down the lights and the “music”. And now that we’ve all had a little practice, what took 90 minutes on the first day has dropped to less than ten. Sometimes I actually take a nap.

Now, thirty days business days later, I’m done.

And I’m fine. Quite fine. I’ve had almost none of the potential side effects: nausea, dizziness, vomiting. Vomiting. That’s a nice thing to skip. Yes, I have a bit of “sun” burn, especially on my right ear (stage right). A special lotion—Calendula— soothes that.

The high-energy x-ray hair cut—the most expensive and time-consuming hair cut ever—has done its invisible job and created my only side effect, the right side of my skull has no hair. Unfortunately, it’s done nothing to diminish my ear and nose hair. The swoop on the other side could be cultivated into a comb-over or I could shave the whole thing, but as someone said recently, the shaved head is the comb-over of the millennium. So I’m trying to make it a fashion statement.

They won’t know if there’s any real effect for 6 to 18 months, after several more MRIs, but statistically, its predicted to have a positive effect. So once again. Hooray! Once again a very, very positive wait and see… That’s quite comforting.

Posted in I have no earthly idea, No. 03 – MRIs Ad infinitum, No. 04 – ID Potential Treatments, No. 07 – Medicate | 7 Comments

Now We’re Cookin’

The Mask

The first item on the prix fixe cancer menu for the next six weeks is a daily course of radiotherapy. Well, strictly speaking, I suppose radiotherapy is the main course. The first-day appetizer was a CT scan, some X-ray sauce, and a delicate waffle cone in the shape of a head. My head.

Radiation is dangerous. Bet you didn’t know that.

Ionizing radiation—alpha, beta, gamma, proton, x-rays, etc.—has caused quite a bit of the cancer in the world. Continue reading

Posted in I have no earthly idea, No. 04 – ID Potential Treatments, No. 07 – Medicate | 7 Comments

All Losses are Old Losses

We lost a close and dear friend last Tuesday. She was a constant companion, a loyal confidant, cuddly, warm, and giving when she wasn’t being a bitch, a yeller especially in the middle of the night—”Where are you?” “I’m bored!”—, a film star, a water-lover, and a cat.

Her name was Squid. A cat so black she was almost impossible to photograph, she got her name at the end of an unproductive brainstorming session where we had decided just one thing, that the name “Inky” might make us throw up. Just at that moment, a friend called to ask if we had a recipe for an unusual pasta dish made with…ink from squid.

We moved into our current house (then a pile of bricks and old plaster) nineteen-and-a-half years ago. We had a cat—Agnes. She was sweet, quiet, unobtrusive, friendly. She would have been happy to have us to herself for the rest of time, but we fell prey to the propaganda: “Are you your cat’s only friend?” At the Anti-Cruelty Society, in the kitty room, Squid picked us to take her home but we didn’t know that until we had been enticed by her black beauty and charmed by her antics.

They say you should introduce the new cat to the old one slowly. Keep it locked in its own room for a while so they can get used to the smell of each other and come to understand that you (the territory) are going to be shared. They need to understand that they will exist on equal footing.

When we opened the door, Squid was the highly deferential second cat rolling on her back and showing the white spot on her shiny underbelly. That lasted about a day. Squid established her dominance specifically and severely. Quick claws, bared teeth, and a distinctive hiss informed Agnes that she was to sleep at the end of the bed if she got to be on the bed at all. Agnes was to lie touching Squid’s feet to keep them warm. Agnes was to wash Squid’s head and paws. Agnes could eat all the food she wanted, but only after she (Squid) was done. In other words, Squid was to be the glamour-puss and Agnes The Fat One.

Nearly everyone thought Squid was a boy with her Tom Cruise nose and tendency to stomp around and demand her due. How does a seven pound black cat stomp? She was a feet of nature.

Squid was nearly twenty years old when she finally kicked the kitty bucket.

After this long, privileged life and brief period of painless kidney failure, she died of a delicate but lethal injection as we watched her relax softly into gone-baby-gone. While the vet fetched a towel to wrap her in, we held her tiny, long, languid and still warm body cradled between us one last time.

As we walked to the bus headed for home, sharing the handle of a box that weighed almost as much as the body inside it, throats tight, tears streaming, Annie speculated that all losses are old losses. Maybe Squid is just a cat, but love is love and her death connects us to other loves and deaths we know—Annie’s mother, my dad—and to those we love but never faced like King and Lincoln, and even those we can anticipate. If deaths pile up, if bodies decompose but memories remain, then this death thing will just get harder as we age. It sure feels that way now.

Posted in No. 06 – Tell the Truth, No. 08 – Watch for Signs and Portents | 4 Comments