Nocturnal Admissions

The time is currently 4:46AM.

I woke up just a few moments ago, surprised to find myself an unwilling participant in my own dreams.  Not so much dreaming unpleasantly as instead quite abruptly finding myself, in my dream, refusing to keep playing along.  No longer in the mood, as it were.  Possibly by presence of mind (but more likely due to whatever discomfort had spoiled my affinity for the surreal and for sleep), I awakened and tossed about for a few minutes before realizing my uncooperative attitude had followed me.  Each position was less comfortable than the last.  I got up out of bed, and was hit by the most intense nausea I've felt in years.  As I stood in the doorway to my bathroom, insisting to myself that of all the things I was not eager to do this night, vomiting was right at the top, I wondered what in the world could be causing this. 

Tonight is the first night of my 10th round of chemo.  I know my way around a bottle of Temodar.  I'd taken my anti-nausea Ondansetron (aka Zofran) as prescribed.  I could do this in my sleep.  Once my nausea had come under control I got myself a drink of water and popped another Ondansetron.  It tasted of mint.

Ondansetron does not taste of mint.

Rather, a new allergy pill I'd purchased tastes of mint.  I'd taken them all out of their bubble sheet and put them in an old empty pill bottle, an Ondansetron bottle, but I'd taken care to cross out the name of the drug to write, "Allergy" in pen.  I'd also picked up my last refill of Ondansetron at a new pharmacy, one which used ordinary pill bottles instead of the usual, squat, over-the-counter-style bottles.  I would like to take a moment to stress how important it is to know what your pills look like, and not swallow any old thing just because the bottle is the right shape and you're pretty sure you've seen that pill before somewhere.

The time is currently 4:58AM, and I'm typing this as I wait for my first Ondansetron of the night (and morning) to kick in.  I should probably have a trash can or a bucket next to me but I don't.  That cardboard box there will have to do.  I'm already feeling better but I have no idea how this little adventure will impact work tomorrow.  I was hoping to be productive.  On the plus side, my sinuses are clear.

I'd like to end by sending support to Joan.  Some of my regular readers may have seen her commenting on some of my posts.  Her husband Duke had been battling cancer for nearly one year, and Joan had always been very willing to give support and care to his fellow patients, including myself.  Sadly, Duke recently passed away.  They had been married longer than I've been alive, and I feel that the breadth of their experience renders any words of comfort I can find as trite.  So instead, I'll say that I'm here for you, Joan.  Just as you've always been there for me.

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.

Losing my Winter Coat

"Have you been shaving your hands?"

A question of profound dignity and gravitas, it was asked, as so many others, over chicken soup at my parents' house, and by my mother.  A little background: ever since I became a teenager I have been, technically speaking, a pretty hairy bastard (...ladies).  Not like wolf-man or Chewbacca hairy, but through a mix of genetics, heritage and skin care choices, hairy enough that had you seen me and someone were to ask you to make a statement on the hairiness of that fellow, you might use terms like, "fairly," or "relatively," or "that guy should probably shave his hands."

However, I had not, nor have I ever shaved my hands, nor are they baby-smooth at this very moment.  Still, my mom was correct in her assertion that I am not as hairy as I used to be.  What body hair I do have is thinner, shorter, lighter and more sparse, such that I am probably now in the, "eh, I guess" category of hairiness, rather than the "oh yes indeed" category I had long occupied.

I hadn't noticed the change before then, honestly, unless you count my concern over my eyebrow, which leads me to believe I'm losing hair all over.  It would probably be pretty distressing to me had I maintained any delusions of keeping my hair, but as I haven't and shave it with the same electric razor I use on my face, I hadn't noticed any change there.  My eyebrow seems to have stabilized now, so if I'm becoming slightly less of a hairy bastard due to my chemo then I'll just add that to the perks of having brain cancer (it's a short list).

Speaking of chemo, I just started round six last night.  I'm pretty ready to stop taking this stuff.  I'm tired of spending half of every month exhausted and foggy.  I'm tired of dealing with prescription delivery services that screw up, then screw up again when they call to inform me they screwed up the first time, so that I get my pills just hours before I need to take them no matter when I call in my order.  Sick and tired of being sick and tired, blah blah blah.

But hey, at least I'm not a yeti anymore.

MRI Results and Other Stuff

Had another MRI last week and got the results back: no change.  Still stable.  I find myself thinking about how nice it would be to get a little improvement but I can't really complain about a lack of progression.  I've actually felt pretty good lately.  My mind's felt clear and sharp, and I wonder if my brain's started rebuilding some of those old connections that were so unceremoniously severed or cooked months ago.  If we have any linguistics experts in the audience it might be fun to chart my vocabulary over the course of my blog (linguistics experts tend to have an unusual definition of "fun"). 

I've been chatting with my friend Will again, the one in Canada, and he only has a few more rounds of Temodar left before his doctors cut him loose.  He'll still get regular MRIs and whatnot, but that will be the end of his treatment.  It's caused me to wonder what that's going to feel like.  My NO told me that I'm going to be on 5/28 cycles of Temodar for one year, by which he means two years.  Maybe it's the kid in me but "two years" still feels kind of like, "forever."  Like I will always take Temodar for five days out of every 28, for all perpetuity (having fun yet, linguists?).  There will come a day when I will probably stop taking Temodar.  I imagine that will be quite frightening.  The chemotherapy is the only thing I'm really doing to fight my cancer.  If I stop taking it, will that mean I'm no longer really fighting it?  What if it starts to grow again, once the chemo is completely out of my system? 

I know these thoughts aren't restricted to some point months and years in the future; it's entirely possible that my cancer could start growing again right now, regardless of my treatment.  It's also likely that after two years, the risks of continuing chemotherapy would outweigh the benefits.  The people who make it seem to think so, and that's a company that would absolutely love to keep selling me pills for as long as possible.  It gets back to bravery versus endurance.  Right now, I'm enduring my treatment.  What happens when there's no longer a treatment to endure?  I guess all I can really do is hope there's something new for me to try by then, perhaps that TTF thing I linked earlier in the month. 

I've been playing Kingdoms of Amalur: Reckoning lately.  It's a pretty neat game, but one of the core elements of the setting is that everyone has an established fate, and there's an order of individuals who can read that fate and tell people how they are going to die.  They develop the idea pretty well, to a point where there are a lot of familiar thoughts and words.  Like a father, debating with himself over whether or not to tell his family that he will soon die, and whether it is selfish of him to not want to see them suffer with that knowledge.  The story of the game revolves around the fateless protagonist, who, by virtue of their blank destiny, can alter the fates of others and save lives that were not meant to be saved.  Maybe once I'm done with chemo I'll keep an eye out for people with pointy ears and giant swords. 

Then there's God Bless America, another movie about cancer, specifically brain cancer, specifically how it's completely, totally 100% lethal.  It's used as a typical, "nothing to lose" character trait that drives the plot, wherein a brain cancer patient goes on a rampage against vapid American pop culture and also he picks up a teenaged girl somewhere along the line for some platonic and non-creepy reason.  A plot like that doesn't really hold up to close examination (why kill someone when you can just, you know, move away from them?) so I imagine it's more about catharsis than anything.

I still haven't seen 50/50, but have been assured that it makes having cancer seem like a totally awesome life filled with casual sex and frequent naps.  Guess I'm half way there. 

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.

MRI Results

I had my MRI on Friday, a somewhat different and less pleasant experience than my previous MRIs.  It was my first time at that particular facility and I think they may have been using a more powerful magnet (3.0 Tesla as opposed to 1.5 Tesla), which necessitated more arduous safety protocol (triple word score!).  Instead of taking away my cell phone and telling me to have at it, they required me to change into a hospital gown.  I could keep my underwear and my bandana but that was it, and I declined on the bandana since I'd really rather not spend 40 minutes resting my head on a knot.

On to the important part.  I won't have the official word for another day or two, but Dr. C. called me the same night, after office hours, to tell me that... everything looks fine.  From a quick once-over, he said it actually looks pretty good and didn't see anything new to worry about.  He went out of his way to call me because he's dedicated, not because there was anything that needed immediate attention.  I'm going to swing by his office today to drop off some copies of my earlier MRIs; I tried to give them to the MRI operators but they didn't want them.  Some question of providence, I guess.  They said they'd get them directly from the other facilities.  Dr. C. seemed surprised by that and requested I bring the discs to his office.

My appetite's held pretty stable, though I have forgotten to eat a few times over the last several days.  My energy level, not so much.  I felt OK on Friday but was told I looked pretty bad, while on Sunday I felt much worse and was told my color had improved since Friday.  It's kind of annoying that my physical state shows that much in my face, especially when it doesn't always match how I feel.  I sort of wish people would stop talking about my color.  I know that the implication isn't, "you're really sick so I'm amazed you almost look healthy!" so much as, "the other day you looked like hell but I didn't want to say anything and I'm glad you're doing better now." 

I'm still not totally devoid of symptoms.  That tiny burn mark remains in the center of my left field of vision, still so small I only notice it when I isolate it within the body of a single character of text.  I'm not sure I'll ever be rid of that.  The eyestrain's getting kind of bad, too.  I really need to get some glasses already, as I have more than a year now.  My hands were trembling again on Friday and my mother noticed, so it's unfortunately not just my imagination.  They haven't given me any trouble since, but I really hope this is just a passing symptom.  I spend all day typing.  My hands are my livelihood.  At least they usually are.  I've been wandering through a patch of chemo fog and the words aren't flowing, even by their new, lower, standard.  Hopefully this post will act as something of a writing exercise and throw some grease on those gears.