Sunday, July 28, 2013

Post Script

Dear Friends of Chuck,

I know a lot more about platelets today than I did yesterday.

Low platelet counts DO cause sufferers to feel faint.  Platelets are manufactured in the bone marrow; chemotherapy causes bone marrow suppression. 

I spoke to an oncology nutritionist this evening, who said there is nothing specific one can eat to raise platelets, but anything that will boost the immune system will help and she emphasized protein above all.  She urged that Chuck eat more protein, whether in the form of peanut butter or steak or Greek yogurt--as well as more calories.

We'll be working on protein consumption this week, among other things.  And grab bars in the shower.

Best to all   

Friday, July 26, 2013

Bump in the Road

Dear Friends of Chuck,

Wednesday was less than a banner day for our increasingly battle-scarred scribe.  Chuck's doctor requested that he present himself at N.Y. Presbyterian Hospital's outpatient oncology clinic for a blood draw one week before he was to start his fourth monthly round of anti-tumor chemotherapy, Temodar.  It's a drug you have to love and hate at the same time, given that it's the first line strike against glioblastoma, and yet, it's not a happy thing either.

Chuck noted he felt weak from the effort of simply pulling himself out of the deep-seated black town car I had hired to get him from his front door to the front door of the bustling hospital.  We had not walked more than twenty steps when we were confronted with a uniformed guard requesting photo IDs.  Chuck took the opportunity to announce he had to sit down, immediately.  He collapsed into a banquette-style chair a few feet away from the guard in the lobby.  As I was scrounging around the interior of my bag for my driver's license, the guard said to me with quiet discretion, "May I get a wheelchair for your friend?"  To which I immediately replied that my friend would refuse a wheelchair, alas.  And it's true.  Chuck has refused wheelchairs before, with clenched jaw and an unusual avoidance of eye contact, unwilling to be persuaded by a friendly face.  "I'm NOT ready for a wheelchair," he growled at me as recently as two weeks ago.

I brought him a bottle of coconut water and treated myself to a double coffee, unaware how important the coffee would be in the hours ahead, or that I would not reach my bed that night until 5 a.m.  We sat and chatted, until Chuck declared himself ready to push on toward the elevators.  By the time we were seated in the lobby of the oncology clinic, Chuck's Noam Chomsky reader slipped into the rear pocket of his increasingly roomy jeans, we were feeling careless enough to reminisce about the releases of Rubber Soul and Between the Buttons and worked at naming the songs on each album.  A wait of 45 minutes ensued before Chuck's name was called.

Clutching Chuck's phlebotomy orders in my hand, I encouraged him to rise and walk with me, but noticed he was sitting head-down with eyes closed.  Still, he rose and walked, slowly, out of the lobby.  I thought he was next to me until I felt a hand on my shoulder and turned to see Chuck's knee buckling, then the other buckling, and his large blue eyes framed on me just as he went hurtling to the floor, his face bouncing off the floor of the corridor.  "Help!" I yelled, probably unnecessarily.  In a split second, we were surrounded by professionals--nurses, MDs, hospital aides--all of whom moved in tandem to gently roll Chuck on his back and cradle his head.  His eyes were opened wide and he looked at me.  "What year is it?" a young fellow in a white coat hollered.  Even I couldn't have named the year at that moment and what did the date matter anyway?  Chuck was silent but I knew he was perfectly alert and in his right mind.  I suspected he was thinking, as I was, "It's the bad year." 

Word swiftly arrived from Chuck's oncology MD that he should be taken post haste to the nearby Emergency Department.  He was helped into (irony alert) a wheelchair and a couple of nurses rolled Chuck to the ER. There, one of the nurses set the chair's brake and after wishes of good luck abandoned us to the standard emotional squalor and tedium of every ER in the nation.  Most of you likely know the drill.  Forty minutes passed, during which Chuck revealed himself to be in possession of all his faculties, with nothing but a bruised corner of his lip to show for the violence of his fall.  Nevertheless, he had some peculiar looking abrasions on one hand; merely touching them made them bleed a bit.

A young triage nurse with a world-weary sensibility took a history, half interested, half uninterested, of Chuck's most recent hours.  Admitted into the maze of the actual ER, he lay on his back on a raised gurney, mostly sleeping with his baseball cap pulled down over his face.  I sat at the end of the gurney on the inevitable plastic chair, my ears level with the soles of his large shoes.  We never did achieve the privacy of a "room," a curtained space. My chair was inches in front off the waste container where dirty linens were tossed and immediately next to the biohazard trash can, emptied hourly, where nurses disposed of armfuls of used syringes, bloody gauze, tubing, and other hospital detritus.  A Purell dispenser was attached to the wall directly above my head; I got used to people's hands' barely grazing the top of my head as they jabbed one hand under the dispenser, almost unconscious of their act as it was repeated with such regularity.  Hemmed in by biological waste, I, too, decided to avail myself of Purell with increasing frequency. 

At the nurses station, a couple of young women were nearly doubled over in silent, tearful laughter over the recent admission of a person with infected butt implants.  Who knew?  Soon after we arrived, an EMT worker pushed a hunky teenage boy through our narrow corridor; his upper torso was entirely covered in a colorful if indecipherable tattoo, his right arm gashed, his head in a brace.  Someone had placed his four-foot skate board next to him, it's last twenty inches snapped off and sitting on top of the rest of the board as if someday the jagged-edged pieces could be glued back together.  He was discharged before Chuck.  Two slim-hipped men in black uniforms and caps--FDNY in large white letters on the backs of their shirts--sashayed past us as if on a runway in Bryant Park.  "The Village People are here," I told a nonplused Chuck.  "Do you want to read my Noam Chomsky?" he replied.  "Yes, I do," I replied, accepting the 1994 collection of interviews and burying my nose in them.  Sorry to say, read in such circumstances, Chomsky comes off as out of touch.

Exhausted-looking residents strolled up to Chuck with queries. They were like sleepwalkers, often repeating the same questions then barely suppressing their yawns as Chuck tried with some difficulty to explain what had happened.  Eventually, a senior doctor determined that he had probably fainted.  But before Chuck could leave, he needed a CT of his head--at least the third such test he has had since February.  At 10:30, the doctor, who Chuck earlier had impressed by telling him he had interviewed not only George and Paul but Keith Richards, too, pushed Chuck's rolling bed awkwardly into the CT scanner room without help from anyone.  He argued for five minutes with the scanner lady for Chuck to be scanned immediately, despite the fact three other people were stacked up in the corridor awaiting their turn.  "Please--do it--for me?" the doctor pleaded.  The CT results were available by 10:45 pm.   The scan was deemed normal, but for evidence of February's craniotomy.  His heart was in tip-top shape.  But a blood test indicated his platelet count was 48.

Platelets have a lot to do with the blood's ability to clot.  A platelet count of 150 is considered pathologically low.  What destroys platelets?  Temodar.  Another reason to hate the drug, and yet, we must love it still because it is a glioblastoma cell terminator.  I do not know if platelets contribute to fainting--I should have researched the matter before composing this update.  All I can report is that once all of these findings were established, Chuck was at last discharged at 11 p.m. after being handed an informational essay about syncope (fainting) and a highlighted caution that syncope was a very dangerous condition.  And the syncope handout wasn't even addressing the issue of having syncope in combination with too few platelets.  Imagine fainting and hitting your head on the ground when you don't have enough platelets.  Imaging doing this when you're not walking through the halls of a world class hospital but are somewhere on upper Broadway instead.

Not surprisingly, the following day (Thursday) his oncology doc told me Chuck's Temodar dose, to begin next Tuesday (July 30) is being abandoned until his platelet count improves.  Or, another possibility, it will be started in a few days at a lower dose.  That is all I know at the moment about the platelet/Temodar issue.  Chuck will have a brain MRI next Wednesday, and another blood test to determine his platelet numbers.

Two days later (Friday), Chuck already was ignoring my fervent request that he stay in his apartment until more is understood about his newly diagnosed predisposition to faint.  (His doctor agrees.) Two friends from Wisconsin showed up at mid-day and took him out to lunch at his favorite diner in the 'hood, two blocks away.  Stalwart neighbor Larry Lawrence suggested to Chuck that he invite his friends in rather than go out.  Chuck responded in the negative.

I wish more people were cognizant of the specificities of the seriousness of Chuck's situation, I really do.  It's why I'm writing this tonight, though I have no idea who my audience is or if I even have one.  He shouldn't be walking around on the hot concrete of Broadway or Amsterdam just now--he really shouldn't.  People, consider bringing a big bag of delicious groceries to the door of his apartment instead of inviting him to lunch for the time being.  Organic fruit, kefir, organic orange juice, cashews, Fuji water.  He'll love it.  If you want to be helpful, that would really be helpful.  Or bring up a couple of delicious take out meals, pull up a chair and dine on site.  

According to Chuck, out of his apartment for the first time since he came home from his stay in the ER, he and his friends sat and talked for about 90 minutes.  When he stood to leave, however, he recognized a fuzzy, woozy sensation in his brain.  It was exactly what he had experienced seconds before his fall on Wednesday.  Wisely, he immediately sat down and waited until the sensation passed, about five minutes, then stood again and walked home very slowly, escorted by his Wisconsin pals.  Whether they comprehended the danger he was in, I do not know.


Thursday, July 18, 2013

Round Three

Three weeks or so have passed since I last posted an update on Chuck's rocky journey through the cancer maze.  Portions of that journey have been simply too banal to report, some of it less than uplifting, some of it uplifting.  Add to that my own lousy health of the last couple of weeks, and the result has been a persisting uncertainty that anything I say on one day will still be true the next.  Something I've noticed about cancer is that it never proceeds in an orderly fashion.   Thus, my tendency has been to wait for some new event that can be heralded as "news."

But here goes, with a warning that I am writing on a day when my body temperature is a few degrees higher than the actual temperature of the air during what may be an historical heat wave in New York.  It's dangerous to breathe today and probably equally dangerous (for me) to try to write. 

I'll start with Chuck's visit to see the oncology fellow assigned to follow his case, Dr. Bishoy Faltas, last Friday, July 12th.  You know you're old when suddenly doctors start looking like they've just graduated from high school.  Nevertheless, there is no doubt that Faltas is a real doctor and is pretty well acquainted with glioblastoma multiforme and its devious ways.  Plus, to make certain he has covered the waterfront after his discussions with Chuck, he always invites the chief of the oncology outpatient clinic, Ronald Scheff, to stop by and take a look at Chuck.  Scheff inevitably regards Chuck with what seems like x-ray vision; I always sense he is greatly less interested in what Chuck says than in how he says it and how he looks when he says it.  Scheff is an expert in glioblastoma, and though I feel it might seem impertinent to ask how many glioblastoma patients he has known and treated  in his career, I imagine the number is very high and that he is a very good judge of such patients.  I'll just reveal my bias here and note that he's rather handsome.

Given that Chuck had the previous Saturday completed his third 5-day go-round with the oral chemotherapy drug that is the first-line therapy against glioblastoma tumors, the conversation was centered on Chuck's questions about the drug--questions mostly involving how long he would be on it.  ("Oh God," he has said to me many times, "am I going to be on Temodar the rest of my fucking life?")  The short answer is "No." Presumably, the tumor begins to mutate in ways that make it impervious to Temodar, at which point another drug, Avastin, which interferes with the development of micro blood vessels the tumor grows to better nourish itself, is used.  (Apologies to queasy readers.)  According to Faltas, studies have indicated that Temodar is effective against glioblastoma tumors for six months. That's the good news for anyone who has to take it and be subject to its side effects, which chiefly seem to be exhaustion and loss of mental sharpness. 

Chuck, however, has repeatedly provided abundant evidence that, so far, he wants to do whatever is necessary to beat back the tumor, and so the good news is that Faltas indicated Chuck and Temodar need not necessarily be parted after month six (October).  Scheff seconded this sentiment when he entered the room.

"The studies tend to indicate Temodar therapy will be effective for six months or so," he confirmed, adding, "but at this institution (Weill-Cornell NY Presbyterian) we have used Temodar for up to two years."

So there you have it.  Good news, great news, but all will depend on Chuck's ability to handle the side effects of Temodar, which can impact the immune system and cause debilitation.  So far, his blood tests indicate his immune system is intact and quite robust for someone in his situation.

There is no doubt that after the five-day Temodar course, Chuck quickly began to feel better.  He had a few lunches, even a breakfast, with friends he hadn't seen in a very long time and was able to take fewer naps.  He began to think about writing again.   Perhaps as a prelude, he took on a major organizing task in his kitchen:  throwing out a very large collection of vitamins and supplements that were past their expiration dates. The seeming betrayal of a couple of decades of vitamin supplementation was hardly lost on Chuck.

Chuck's stated desire to begin organizing projects throughout his apartment, many of which have been left undone for some time, seemed like a good sign to me. I'm not sure of what--grappling with unruliness, bringing order to disorder, making room for empty space to simply exist in an otherwise crowded room, providing a sense of calm for its inhabitant.