Not Dead Yet. Responsibilities of the Invalid

It has been said that there are two kinds of people, people who think there are two kinds of people, and people who don’t. In the cancer world there are in fact at least two kinds of people: the patients/ victims/survivors, and then, most important, the caregivers. In our tumor support group each of these two groups tend to have separate support sessions: survivors with survivors, etc., — separate from the caregivers–the idea being, I suppose, that support from those in your shoes provides greater insight and information.   Then a special category, the invalid. One enfeebled in mind and body and usually old.

I’m a survivor of my first surgery in late July. Before that surgery and the second in October I asked the surgeon what impact it would have on my cognitive capacities. Retaining my ability to think is my biggest concern in this whole adventure. I was a bit surprised to learn that the resection would have a predictable impact on my vision. Seemed a little late. He indicated I’d probably have a pork chop-shaped occlusion in my upper-left visual field. Cognitive, but not in the way I’m concerned about about really. I’ve been feeling a bit the invalid recently. My vision is off — it’s hard to see the computer screen. That porkchop-shaped loss of visual field has really taken a toll on my left peripheral vision, which means that if we pass each other on the sidewalk, my left shoulder may give you a solid knock. Nothing personal. Just my porkchop acting up.

Brain Fog

My theory, yet to be confirmed is that insane asylums were created as hospitals for the no longer valid — the invalids.

Posted in I have no earthly idea, No. 05 – Quit Wasting Time, No. 06 – Tell the Truth | 4 Comments

Good news: my Tumor has shrunk!

Is your Chemo Better than Mine?

possibly, if you’re eating a healthy diet.

Think about this:

everything is chemo.

That is, everything we ingest is made of chemicals even if they’re “natural” they have effects and interactions with other chemicals and resultant negative effects — think snake venom — what could be more natural?

So food is chemo. It’s well known that food affects health of course, and evidence is accumulating that the foods we eat can have direct impact on our cancer risk — for both getting it initially and recurrence.

Is your Chemo Better than Mine?

Can food cure cancer? Not accoding to current science, but there are compelling indications we may one day get there. Check out the documentary “Forks Over Knives” for an intriguing glimpse of the nutritional research of two prominent doctors.

Chemotherapy means “chemical therapy.”  Cancer chemo is usually an intravenous infusion of chemicals designed to interfere with cell replication. An apple is an amalgam of chemicals. Coffee? Second-hand smoke or auto exhaust? Alcohol? “In” can mean by mouth, breathing, or through the skin — i.e. hand lotion. All are chemicals, and really pretty strong ones. Of course, except for air, food accounts for most of our c hemical intake. We know that the kinds and quantities of food we eat have real AND SUBSTANTIAL health effects. Some are obvious and easy to avoid. Many diseases are linked to diet: heart disease, diabetes, hypertension, even cancer. Whole foods are especially useful as preventative agents for cancer relapse and progression. The phytochemicals present in most foods act to slow cancer cell replication. There’s SOME evidence that chocolate, red wine, blueberries and other foods have properties that improve health. Of course doctors resist declaring any curative effects and rarely prescribe food — tho’ it is done.  It’s the phytochemicals in whole foods that do the work. There’s no superfood, but antioxidants that come from fruit and vegetables can reduce the formation of the”free radicals” that damage cells and open the door to cancer f0rmation mechanisms. Despite efforts to isolate and purify these chemicals into dietary supplements, it has been shown that supplements don’t provide the same benefits.

So, what is your chemo doing for you? Or to you? If everything is chemo you can reduce cancer risk by eating right. Michael Pollan‘s rule, CHeck out the book antiCancer for an experts view of the power of diet in combating cancerwhich is backed up pretty well by the science and research on the topic:

“Eat food. Not too much. Mostly plants. Don’t eat anything your grandmother wouln’t recognize as food.”

I’ve begun a new chemotherapy regime, this time with an agent called Avastin. The previous round was a mix called Temodar. It had minimal side effects. Ok — good.  but it also had little positive effect.


Both of these chemicals are designed to cut off the flow of blood, i.e. food, to cancer cells and starve them (sounds cruel) — to slow tumor growth and regrowth, especially after resection. The image of chemotherapy for many people is the more severe side effects, especially hair loss. On Temodar I experienced very few and Avastin, so far, has also had few side effects. According to the surgeon, during the July surgery he removed 95% of the tumor, but all of it had grown back by October. We’re happy that the new regime has been avastinprovement (pun intended)… The most recent MRI showed no new growth – and some healthy tissue moving in.

Avastin is administered as IV, so I’ve been going in every couple of weeks to have a needle stuck in my arm. The chemo drugs are strong chemicals, poison really, introduced to the body and designed to seek out tumor growth regions and reduce the creation of new blood vessels.  Yay chemo!

Really Bad Chemo

I’ve worked with some pretty dangerous chemicals in my life. I’ve spent a lot of time doing construction which means paints and adhesives and other toxic stuff with solvents. I breathed in in large quantities. Based on the research out there, I’m pretty sure my cancer originated with one or another of these environmental toxins. But of course, unlike lung cancer’s link to smoking, there’s no direct cause and effect relationship which can be established between my cancer and any particular chemical, partly because I have no record, and I likely didn’t follow the label precautions. Ah… heedless youth.

There’s a pervasive urban myth that anything will cause cancer in large enough doses. If true, can chemotherapy cause cancer? I would not be surprised. Hospitals are dangerous places. “Chemo” of course is short for chemical. To state the perhaps obvious, chemicals are a double-edged sword.  Pour acetone on cancer cells in a petri dish and they will be history in seconds. But inhale acetone or other toxic solvents and you’ve ingested a powerful carcinogen. Will you get cancer instantly? Probably not, but you may get sick or at least high which tho’ momentarily pleasant, is a bad sign.  A few good basic rules: 1. Always read the label warnings and take them seriously. –2. If it makes you lightheaded, it probably causes cancer.

So the good news is, my tumor seems to be under control since starting Avastin infusions.  But I hope you will forgive me if I give some credit to all the mandarin oranges we’ve been eating.  Thanks, Cuties!

Posted in I have no earthly idea, No. 04 – ID Potential Treatments | 10 Comments

Noticing Nirvana

Had a very interesting experience a few months ago. My focal seizures were starting to occur at inconvenient tho not really problematic moments, so I started trying trying to catch one coming on. To that end, I was determined to pay attention to all my environmental inputs, to notice everything, external and internal, and in the process identify a connection between a particular feeling and a  focal seizure.  So walking down the street and attempting to be always  aware of colors, shadows, sounds, the feeling in my joints and under my feet.. Just paying attention — being mindful, as it is referred to in meditation practice, seemed like it might work After talking to some folks more familiar with meditation, turns out I was doing “walking meditation”.

Meditating by accident. I’ve been interested in meditation for some time, and had been learning about the benefits for tumor and brain healing, and life in general, which are many. Luckily I managed to be mindful when crossing streets too.

Continuing to try to notice everything,I found myself seeing the unexpected, such as small kindnesses between strangers–from someone pausing to help the apparently lost/confused out of town visitors (common in many places I think) to picking up and returning dropped items — which in one case was a twenty-dollar bill that tumbled out of a pocket and was retrieved and returned at a run by a follower who could easily have kept it without any but me seeing.

I was the recipient of these moments too. A friend, Nancy, picked me up at a convenient place so we could have lunch, and while I waited in a little branch bank lobby, the banker brought me water. At lunch at Inspiration Cafe we learned from our waitress that she had been, in effect, rescued from poverty and homelessness by the Inspration Corporation which started the cafe and uses its program to train the disadvantaged for restaurant jobs including jobs as chefs.

I also found myself alert to such opportunities, like a the young lady on the train whose Starbucks cup was leaking (as they always seem to do), and dripping on her ankle. I had a tissue in my pocket and handed it to her. She smiled in surprise and appreciation  (it seemed to me), and at the next station, we both went on our way without a word. But the interchange was very satisfying for reasons not entirely evident to me at present. Is helping someone just intrinsically rewarding? Can it be explained as an evolutionary adaptation? Certainly human cooperation has been. I think it’s just kind of fun. Getting a friendly reaction (or action) from a stranger is un-expected, and that surprise, like a joke’s punch line can elicit a smile from both parties. Perhaps it’s the joy of a real, if brief, human connection; something rare in any circumstance.

Nancy had another plan — a wonderful dinner for Annie and me to celebrate our recent marriage. Yet another unexpected kindness, even tho from a friend not a stranger. Arriving with Nancy at her house, we awaited Annie’s impending arrival, I still unaware of the upcoming surprise dinner. I laid down to take a nap and continued my attempt at continuous meditation.

Where did that come from?

As I lay there, rather suddenly I noticed I was aware of much more than just the sounds and changing light around me. As I tried to maintain a mindful awareness I noticed I was suffused with a feeling of deep connection to the world. At that moment and for an hour or so thereafter, it seemed to me that at that instant there was not and could not be any strife on-going in the world. That the world was full only of goodness, love and beauty.  The feeling was so strong that despite knowing this to be impossible AND that this impression would end, it nonetheless continued and I could not help but believe it. It may have been a religious experience, but unlike Quaker Founder George Fox, god did not speak to me or make any demands. She was probably busy and perhaps bored with all the insincere religiosity that seems to be in the air. Was my experience the result of my starting attempts at meditation? Or my wonder at the goodness strangers could show to each other? I have no earthly idea.

In any case it was very strong and like nothing I’d ever felt. I remarked upon it for the rest of the evening, I’m sure annoying my hosts and Annie to no end.

Was this nirvana? Who knows. It was amazing and I might repeat it if I could, but it was so intense, I’m not sure I could stand it. It was kind of a revelation and has helped me be mindful of seeing the wonder and hope possible in our world if only we stop and look. I will continue to attempt to practice meditation. It takes more effort than I would have thought, but the discipline seems worthwhile. I will remember this experience I’m sure. And I do recall it at moments of trial to invoke the wonder of life.

Like a cat waiting for a mouse, my persistence paid off in the intended way. Like the feeling before a sneeze or a yawn, my focal seizures seem to be preceded by a slight bit of nausea. Strange, but it is a reliable enough signal that I have some time to prepare for the strange symptoms that come with these mini-seizures.

Posted in I have no earthly idea, No. 01 – Get on with Life, No. 09 – Avoid Situations, No. 10 – Have Fun | 10 Comments

Coming Out of the Clouds

Maybe it’s obvious, but digging about in the brain can have some deleterious effects. My greatest fear from the start of this adventure in brain science and chemistry from the beginning of this adventure in brain structure and chemistry has been a potential loss of function — of cognitive ability. Thinking is fundamental to my life in terms of enjoyment (“figuring stuff out” and social interaction . Is my need  greater than others?. I doubt it. But the act of  thinking is fundamental to my being .  So when the surgeon said I’d have some vision issues, it concerned me. After the first major surgery on July 27, the After the first surgery, my recovery was speedy physically but vision issuesmanifested in the most curious way. I began to see amusing figures floating in spaceAfter the first major surgery on July 27. This manifested in the most curious ways. I began to see amusing figures floating in space–Little glyphsdrawn in pen and ink it appeared, that looked as if they drawn in mid-air in pen. Yes. Hallucinations. I was entertained however. Especially when Marvin the Martian appeared on a nurse’s shoulder.

The best waswhen a very attractive goat skin cap floated out of the wall directly at me. It had a nice little brim and was covered in brown and white goat hair. it seemed as if I could have reached out for it and put it on. Fantastic.

These hallucinations have largely gone, but sometimes when a group of people is walking toward me on the sidewalk, a gnome-like creature will join them on their trek. There’s a name for this:”peduncular hallucinosis.but don’t expect me to go on about my invisible friends.”  They aren’t that interesting. And conversation doesn’t seem to be their strong suit — at least with me, so lucky for you I won’t be going on about my invisible friends..

The other difficulty is a change in vision generally It seems as if my glasses are dirty all the time. The surgeon predicted some vision issues due to the resection location: the right frontal lobe. I can get around fine. Public trnsport presentspresents no issues. the biggest frustration is reduction in my left peripheral vision. I haven’t been driving since my first seizure — since it’snot allowed by law just in case one occurs while on the road… And the worst effect has been rather  cloudy thinking. Again — resolving now. The first sign I was coming out of the clouds was, oddly enough, waking in the middle of the night — but I awoke thinking and solving some problem or another.

Posted in I have no earthly idea, No. 06 – Tell the Truth | 10 Comments

Gentlemen. Start your engines

The time has come. I wait in a small room having been dotted with fiducials and scanned via MRI AGAIN. Annie doing some last minute grooming. and scratching my back. Ahahah… So good to me. I’m hungry as heck no food since our b-day dinner last night; a bit belated but delicious dinner at Bouchon. Pre-op sitting meditation, feeling all the good vibes that are coming my way. Thank you all.

Posted in No. 10 – Have Fun | 14 Comments

If it ain’t fixed, fix it again

The chemo regime we’ve just gone though was a breeze. Virtually no side effects, except… It doesn’t seem to have worked. as we had hoped it would to slow if not destroy the tumor. But neither happened. in the last six weeks the darn thing is back where it was before the surgery. Well, it is what it is. THat’s one heck of a side effect. GBM* is an aggressive cancer. So what’s the next step?

More surgery.

It’s scheduled for this coming a tuesday.9/2. So mark your calendars, start your visualizations and wait for the checkered flag! that’s what I’ll be doing as I lie in my comfy or at least, adjustable, hospital bed and await room service. “Room service!” they say cheerfully as they stand just inside he door to take my order for the next serving of hospital food. It’ not bad really, especially with that modicum of choice…

After that? Likely another course of chemo with a different drug. Or drugs. Turns out I’m eligible for a clinical study (i.e. experiment) involving two new approaches. I’ll have to pick one. And once again we will wait and see. But that choice is yet to come. I guess that epitomizes life– choice…

Soon someone will stand at the door and with a Knock, knock, they’llsay “surgery”! just as cheerfully… Then user I’ll go.

Iv’e made that choice. The next is yet to come. But I know Annie will be there to help me think it through…

*GBM GlioBlastoma multiform.

Posted in I have no earthly idea | 9 Comments

Brain Surgery and home in two days!

On July 25th  the doctors finally got back to us with the plan: Surgery.

Information Please

Although changes in the earlier MRI scans had opened up the possibility that the tumor was actually dying and creating a false impression of growth. Of course the idea that nature, with a little help from directed radiation, was taking charge and finishing the job of eliminating the growth and possibly the tumor itself was a fascinating and very appealing thought.


However, the data were not conclusive. The other less appealing potential was that the tumor was growing and even morphing into a higher grade astrocytoma or a different type of tumor–likely glioblastoma multiforme.

MRIs are like layer cakes with each layer representing a cross section image another 1/4″ down the head

Despite various spectral analysis techniques they used to get more information from the MRIs, the only way to really know what was happening was to take a look. The plan was to open me up starting at 8:30 am on Friday July 27th. The plan had two objectives:

  1. Determine the nature of the change: Was it real or pseudo growth?
  2. Resect (remove) as much tumor as possible.

Under the SAW.

I went under the knife, or rather the saw, on Friday July 27th at 8:30 am.

The size of disease

Five hours later I came out of surgery a couple of ounces lighter. The mass and shape tumor corresponded roughly with a cooked egg yolk. The tumor is now off at the pathology lab to determine if it has changed into a different type. If so, glioblastoma multiforme

And home two days later!


Posted in I have no earthly idea, No. 01 – Get on with Life, No. 02 – Get a Second Opinion, No. 04 – ID Potential Treatments | Tagged , , | 6 Comments

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.

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.


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