Now I'm not the sort to complain, but...

Thanks go out to my loyal readers, especially those who gave me some vacation advice.  I'm not sure where I'm going to go but I think I'll put something together at some point, even if just to have something to look forward to.  I always advocate that to other patients who come to me with questions on coping.  This is unrelated to the post title, by the way, I'm not going to complain about you guys.  Anyway, onward.

I really am not the sort to complain.  I usually trust my doctor's word and follow his or her advice, as I think it's kind of a waste of money to go to a doctor only to ignore them.  If a lab tech can't find my vein and has to dig around a bit I grin and bear it, and if they apologize I wave it off (with the arm they're not sticking) as though it's nothing, and really it isn't a big deal.  So in general I have no expectations or demands as to my own comfort or preference.  If I'm in pain I'll tell my doctor, but only so my doctor is aware of it as a possible symptom.  If I'm worried about something I'll ask a question.  Usually I won't make any demands for action.  I understand that what I'm going through is not going to be fun and sometimes I need to be brave, for everyone's sake.  I also have near endless sympathy for the sheer volume of bullshit most doctors must endure from all sides, and would not like to contribute to it any.

However, in my line of work I've learned to recognize patterns, and when the facts don't match the patterns, I start looking for reasons why.  And yesterday, that lead me to, for the first time ever, ask a medical professional to redo a test.

Last week, my platelet count was at 83,000 per microliter: improving, but still half the minimum limit on "normal."  Yesterday, they did a finger stick and it came back at 36,000 per microliter.  They asked me if I've been taking my chemo (I haven't, since the reason I'd come three weeks in a row was to see if I was ready).  Then they got that grave, pregnant silence a doctor gets when they don't know enough to tell you what's wrong, but none of the possibilities are good.

So I asked the lab tech if it's possible for these tests to be wrong.  Brief note here; I am extremely lucky that everyone in my oncologist's office is both knowledgeable and humble enough never to take a question like that the wrong way.  The tech told me that the rest of my levels looked normal so it seemed unlikely, but that she'd be happy to run the test again if I wanted.  I agreed, and this time she took blood from my arm.

This wasn't the cute lab tech that usually draws my blood, however she passed by the exam room, saw me in there, and came to sit with me while I waited for the results.  Very kind of her.  If there are any lab techs, nurses, doctors or other medical staff reading this, do not underestimate the value of simply being there for a worried patient, even if you have no reassurances to offer.

The results came back, showing a platelet count of 158,000 per microliter.  8,000 over the minimum to be considered "normal."  My doctor told me to go home and take my pills. 

I'm still not the sort to complain.  Sure, I now wonder about the validity of my results all the other times they ran a CBC from a finger stick, and I wonder what would have been going through my head right now had I not asked for a retest (leukemia.  I'd be worried that I had leukemia), but I don't blame them for what happened.  I'm not angry that I had to get stuck twice instead of just once.  I'm not going to complain about something that's necessary just because it's unpleasant.

Still, if something doesn't make sense to me, I'm going to ask questions.  Imprecise though it may be, medicine is a science.  Every effect has a cause.  As long as we can leave blame and fault out of it, looking for that cause can be to everyone's benefit.

Not quite there yet, but closer

So it seems this whole low platelet deal isn't a one-time thing.  I guess back when I started chemo I had a healthy reserve of platelets and I've been whittling away at them over the weeks and months and finally used up all my spares, leaving me with the bare minimum (or less).  Short version is that I've had to delay my chemo again.  This time I had about 83,000 platelets per microliter, better than last time but still only about half the lower normal limit and too low to start my chemo.  They're going to check my blood again next week before giving me the go-ahead.  At least they'd better, because all these office visit co-pays are starting to add up.  If I'd known it was going to be this expensive I never would have agreed to have cancer in the first place.  Anyway, we're likely going to change my treatment schedule to 5 days on, 4 weeks off, instead of just 3 weeks off.  The chemo has worn me down.  I need more time to recover.  It boggles my mind that just two months ago they were thinking of upping my dose by about 30%. 

Work's been hard.  Deadlines are deadlines and I hate making excuses for myself, even if they're really good ones, but I've had a lot of trouble focusing lately.  I know that I need to keep working, for the money, the insurance and for the sake of my own emotions.  I just never really expected it to be like this.  You ask someone, what would they do if they knew they didn't have long to live.  No one ever says, "well gee, I suppose I'd keep working a full-time office job."  I'm one seizure away from that no longer being an option.  Of course that seizure would end a lot of other things as well, including the sense of freedom and independence I get from being a mostly-functional adult with my own car, my own keys, and my own home.  I'm one seizure away from being a kid again, but I don't want to go back there.  I just wish I wasn't stuck in this limbo, this constant state of "quasi-dying," where sickness and despair makes it harder for me to work but work makes it possible for me to have anything other than sickness and despair.  If this had just hit me a few decades later, maybe I'd have enough in savings for an early retirement.  As if that's the only reason to wish cancer had waited a while longer.  The other day a co-worker of mine told me I was lucky to be fighting this while I'm still young and strong.  I couldn't help but sarcastically reply, "yeah, it would have sucked if I didn't get cancer until my fifties or sixties."  He admitted that yeah, that was a dumb thing for him to say, but I reassured him that I knew what he meant and appreciated the sentiment.

Over the weekend I visited my parents to celebrate my recent birthday (I should probably update those "29s," but for some reason they all look so much nicer than "30s").  It was stressful, to say the least.  They invited over a few other relatives, including some that are a bit too high-energy for me.  Strange, active people.  I put on a brave face and soldiered through it, for my mom's sake rather than my own.  I felt cornered, in part due to my position at their too-small table in their too-small kitchen, and also because I was the center of attention at a party better suited to someone a third my age.  By the end I'd had enough.  Over the last year I've developed a far greater capability to withstand discomfort, but I've also lost a lot of patience for utter nonsense.  I think there was supposed to be some sort of puppet show but I politely excused myself and slipped out to have a moment to rest.  I felt beyond exhausted and had trouble keeping my thoughts straight.  I had trouble forming opinions, and articulating them.  I didn't feel I was safe to drive, so I spent the night on an uncomfortable air mattress on the TV room floor.  My brother and his wife were using the bedroom I'd used during the month after my surgery, when I'd stayed with my parents.

I don't get to see either of them often enough.  My brother isn't an outwardly emotional person.  He doesn't like physical contact, or expressing things as scary and dangerous as feelings.  He shows his affection in other ways, and over this last year he's been there for me in every way he could, given that he lives half-way across the country.  We'd kept in touch through e-mail but this was the first time we'd met face-to-face since before my surgery.  I know that it must have been emotional for him.  I wonder what he thought I'd become, and how close I was to his expectations.  Did he feel relief that I am so close to what I used to be, or sorrow at the significance of my shaved scalp, and that scar over my brow?

He, his wife and I spent some time together.  That's all I'd really wanted.  Not some party with loud relatives, or "events," or "activities."  I just wanted to be with my brother and sister-in-law for a while. 

Maybe it's time for me to do something other than struggle for adequacy.  I can't retire, but I can take vacations.  That sounds like the sort of thing a 30-year-old does from time to time, right?

Chemo sucks (finally)

Sorry I've been a bit absent as of late.  It's been busy at work and to be honest, I just haven't wanted to think about having cancer for a while.

Last month I had my usual finger stick and my doctor informed me that my platelet count was too low to start the month's round. 53,000 per microliter (normal is about 150,000-450,000). He told me that it's nothing to worry about, no real concern, but that he wanted me to wait a week to recover before starting my next round. A week later I'd rebounded to just shy of the lower end of normal, so he gave me the go-ahead on the lower dose. It was kind of a bummer, since I'd tolerated the chemo so well for so long. My other counts (RBCs and WBCs) were fine.

How he explained it to me, when a patient takes chemo it damages their bone marrow and reduces their ability to produce blood cells. Give the body some time to recover and it can usually repair about 99% of the damage. Now, that's the number he gave me so it's what I've got to work with. I have no idea how accurate that is. So even though the body can almost completely recover, there is a small amount of permanent damage. Then next time, the patient will recover to 99% of their new normal, for a little more permanent damage, which brings them to about 98.01% of their original baseline.

The makers of Temodar suggest that patients only take it for a maximum of 2 years, regardless of its effectiveness. 24 doses means their blood's about 21.4% compromised.

I've always hated math.

I saw a series called The Unusuals on Netflix that has an interesting take on brain cancer.  It's about a group of NYC detectives.  It's not a particularly great show - each character basically has exactly one character trait - but one of the characters has a brain tumor and shows a lot of the same symptoms and anxieties I've seen in myself and other patients.  He decides to try to ignore his tumor, because he doesn't want to end up a vegetable in a hospital even though his doctor tells him he'll be dead within months if he doesn't get it treated.  Throughout the nine episodes I watched (not sure if there are any more), he suffers hallucinations, changes in his sense of taste and smell, headaches, and of course all the fear and uncertainty such a diagnosis brings.  I think the show got canceled after that so I don't know if he ever does get it treated; the closest he got in the episodes I saw was sneaking into a hospital with the coroner for an MRI.

It's a good enough treatment of the disease that I wonder if it isn't based on some real life experience.  Worth a watch if you have Netflix streaming and nothing better to do.

What's the protocol for this?

I'd like to say that I haven't posted lately because I've been very busy but that's only a half-truth.  I did have a lot on my plate, but I wasn't picking at that, either.  Instead I was staring at my plate, wondering why it kept piling up and how much longer I'd have to wait before it magically resolved itself.  It didn't.

I used to wonder if this kind of self-destructive behavior was rooted in questions of self-worth; if I was trying to sabotage the good in my life because I didn't feel that I deserved it.  I'm not sure it's fair to pin it all to my disease either.  The truth probably lies somewhere in between, as with most things.  My last round of chemo hit me harder than the previous (though I think that has more to do with how hard I was pushing myself than my body simply reacting poorly) and I remained mired in a fog for weeks.  I wanted to work but I couldn't.  I felt physically unable to put words on the page and when I forced myself, the result was terrible and embarrassing.  Nothing I'd want anyone to actually read, never mind purchase with their hard-earned money.  Or, you know, department funding.  Whatever.  Thankfully my boss is patient and understanding enough to help me find solutions rather than point out faults, and, when necessary, light a fire under my ass.  I've found my voice again and cleaned off most of my plate, so I felt it was time to check in.

I'm faced with a new question this morning.  The president of the company had another sort of cancer when he was younger and feels that this is a point of connection between us, which is fine.  His variety wasn't quite the same as what I had but I'm not going to turn down sympathy and compassion from the man in the big chair.  This morning he sent me an e-mail on a new "cure" for brain cancer.  It's a sort of supplement called "essiac tea."  Well, he's the thing.  Essiac tea does not cure any cancer (surprise!).  In scientific trials it was shown to have no effect on cancer whatsoever until you get to large enough doses... at which point it may accelerate tumor growth or flat out kill the patient.  The FDA has described it as a "fake cancer cure" and Sloan-Kettering has advised patients to "avoid" it.  So when my president says, "it couldn't hurt," how do I respond?

I thank him politely, promise I'll look into it (which I have), and hope he never, ever mentions it again. 

Anyone else have any similar experiences?

Smooth Sailing

I had a visit with Dr. C. yesterday and got the all-clear to start my chemo.  Not a whole lot has changed since last time.  My blood counts are still great, I'm still tolerating the chemo well, no particularly alarming changes.  All the same, I'm scheduled for my bi-monthly MRI next week just to make absolutely sure everything's behaving as it should.  Except, of course, for that pain in my side.

Dr. C. gave me a physical exam and asked plenty of questions about the kind of pain I felt, when I felt it, what I could do to cause or alleviate it, and how much of a problem it was.  He concluded, with a reassuring confidence, that nothing's wrong.  He's sure that the pain is skeletal or muscular and felt no abnormalities along the edge of my ribcage, where I feel the pain.  He thinks that there may be an old injury or a flaw in the cartilage somewhere and that neither is anything to be worried about.  The fact that I'm feeling it now could be due to my sedentary line of work and my posture while sitting, and he suggests I get more exercise.  It's entirely possible that what I perceived as swelling along my flank is actually from losing weight adjacent to that area.  Even though he's absolutely sure there's nothing to worry about, he told me he could get me a CAT scan if only to put my mind at ease.  I haven't taken his offer yet as I'd like to speak with my endocrinologist first (though Dr. C. is certain my symptoms are not glandular or internal). 

I feel confident in his skill as a physician, and in his diagnosis.  I'll have to wait and see just how much that small bit of uncertainty gnaws at me before I make my decision on that scan.  I think I'm going to wait to see if it gets any better or worse as I follow some of his recommendations.  Even if the intermittent pain never goes away, I can live with that.  Just so long as it's not something we need to address RTFN.

Hope, Fear, Integrity and PR

Lately I've had cause to spend a little time thinking about alternative treatments.  Not for myself, but because I've been asked for my opinion about one in particular.  I'm not going to rail against them again as I've made my stance abundantly clear: they're harmless at best and criminal at worst.

Rather than sit here and fume about the cruelty of these self-proclaimed "renegades," fighting the "corrupt mainstream medical conspiracy," I've wondered why they seem to get so much traction.  I think it's more than simply offering a cure to the desperate, in part because the individual asking me my opinion seemed to already have a quite skilled doctor.  From what I understand of this patient's diagnosis, their prognosis is about as good as it gets when it comes to brain cancer.  Low-grade, very little enhancement, no progression...  Controlled.  Even so, they came away with the impression that their doctor told them to go home and quietly die if they so please.  Their doctor may be skilled, but not terribly personable.  They were so frightened they didn't want to get a second opinion out of an unwarranted certainty that the next doctor would give them even worse news, or insist they go through radiation or chemotherapy.  So they asked me what I thought about Burzynski.  And I told them.  At length.  I was less than complimentary and at one point I think I may have wished cancer upon Burzynski himself. 

That kind of heat is pretty rare from me, but I'd like to think it came from a good place.  I was not angry at Burzynski for lying (I mean, I am, but that's not where I was coming from at the time).  I was worried about the other patient, and that they might put their health at risk chasing a false hope even though - as shown by yesterday's post - there are plenty of real reasons to have hope.  I was worried that Burzynski's unsupported optimism would overcome their doctor's unwarranted pessimism. 

So what is it that makes a false cure more appealing than a real one?

For one, lies are a lot more flexible than truths.  Everyone peddling an alternative medicine can twist (or outright forge) figures to make their product look like a miracle cure.  It's easy to say that their treatment works so well that it constitutes an existential threat to modern medicine itself.  Crying conspiracy is a very useful tact: any lack of evidence or any evidence to the contrary can be dismissed as part of the conspiracy.  We see it in politics all the time.  Meanwhile, legitimate doctors with legitimate treatments are constrained by these little annoying things we call "facts," and when it comes to brain cancer, the facts aren't too pretty.  They used to offer no real hope at all.  Even today, that hope is slim and preliminary.  Except it's real, and that's the important part.  

There's also the matter of what drives people to become con artists, what drives people to become doctors, and what makes someone a leading con artist or a leading doctor.  The most famous con artists are the best liars.  The ones who make the biggest promises, who assemble the best false evidence, and the biggest followings of supporters who are so desperate to believe, they will fight that con artist's battles for them.  I'm sure if Burzynski's followers find this post we'll see an excellent example of that.  I sometimes wonder if the cons believe their own con; if they are not liars but are simply deluded.  I'd really like to think that.  But whether they are lying to themselves or to others, the hallmark of a great con artist is appealing to their target.  They are salesmen.  Selling is what they do best.

A medical researcher has no such aspirations.  They deal in facts and speak factually, even when the facts seem grim.  They build a career by doing good science, not by sales figures.  They build a reputation among other scientists, who know that reality is not determined by popular opinion.  People who know that, if every man, woman and child on the planet holds a false belief, that belief remains false.  That 7,000,000,000 people can be wrong.  Sure, bedside manner is important and I've found that the best doctors not only know their facts but can also relate them to their patients, but a doctor who gives you the wrong information in a gentle way is not a good doctor.  First and foremost, we want our doctors to be right. 

Even when the truth is terrible.