Leaping Down

I am slowly learning how to use my medical marijuana, which is to say that, if I’m willing to cancel all daytime appointments and sleep away my afternoons, I should take a dose in the morning.  Otherwise, I should do all my daytime appointments, then take my dose when all that’s left is to be pampered and waited on by my dear husband who is . . . oh wait . . . going out to sea tomorrow morning before the almost-equinoxal crack of dawn.  

Ian is going to be volunteering again as a fish counter on a leg of one of the annual survey trips down the west coast of the US. This will earn him a lot of “comp time”, so that we can go to Kenya together in November.  But it means that I, for ten days, will be on my own, back to caring for my own needs and those of the dogs, and then, for the last few days that he’s out, I’ll be in Maple Valley at Mom and Marsh’s, looking over their geriatric pets while they enjoy some time away.  It’s only fair, I SUPPOSE, that I pay M&M back in some small way for all the time they’ve spent watching Spackle and Hoover. THE THINGS I HAVE TO DO.

But mostly I just wanted to write this post to let you all know that my tumor markers continue falling apace:  from 81, to 68, to 56 most recently!

Legal

This weekend I became a legal user of medical marijuana.  My sister-in-law, who is a prosecutor in the Seattle area, reacted vigorously when I told her I was going to be able to use pot with permission.  “OOOH!” she exclaimed with relish (she loves her job), “I can tell you all the dispensaries not to go to because you’ll get SHOT!”

Right.  Just because Washington State allows me to have weed doesn’t mean everyone is allowed to have it.  And me, innocent, law-abiding, clean-living (with the exception of chemotherapies, of course) soul that I am, shy and retiring and insecure, arms full of a plant with a lot of value on the street—I’m the perfect target.  And even though I am, in general, innocent and law-abiding and clean-living, and even though I am not shy, retiring, nor insecure—and I’m bad-ass buff—none of that matters to a handgun anyway.  

One of the first side effects that I’m noticing from my newly cooked marijuana oil is a great need for naps.  I mean, I am chill, brother.  I decided that, if this oil works and cures my cancer, I would want to have a record of it, from the very beginning.  I started that record yesterday (I think it may be a memoir project rather than just a series of blog entries . . . yep, that’s me, kicking around the idea of not only becoming a legitimate editor, but also writing a book . . .), but what I’m finding, at least so far, is that it’s hard to build up enough steam to do something when you are, essentially, stoned (the body is supposed to adjust to the side effects of the oil within 3 weeks, and it could be that I should be starting with a smaller dose anyway).

Dude.  I’m actually relaxing for the first time in . . . who knows. Like, really just wandering around the house, having extensive, slobbering naps and in general letting things slide (with the exception of the laundry, which was really necessary). One of our friends, who may have been suspected of using pot illegitimately, and therefore may have been my drug “expert” over the last couple weeks, suggested that perhaps rest, just rest, once in awhile, might cure me.  Maybe that’s the secret to the pot potions—they simply put you to sleep so your body can do its thing.  

Back to procurement, though, because medical marijuana can do no one any good in absentia.  Fortunately, for the avoidance of handguns, many of the medical marijuana users in the area are in difficult stages of difficult diseases—I mean, unfortunately for them of course as far as how they feel—but fortunately for the distribution of legalized pot, because there are lots of delivery options.

The industry is a weird mix of business-as-usual and hush-hush. I received my card from a Naturopath in West Seattle, at a 6pm appointment (i.e. after normal office hours), and it gives me the right to have, for my own use, a 60-day supply which comprises 24 ounces (1 ½ pounds) of marijuana bud and up to 15 plants. The appointment cost $150 if I brought evidence of current disease activity (I had evidence in spades); $200 if I didn’t, and needed the doctor to evaluate me.  Payable in cash, or a money order.  I chose cash. 

There’s an online list of area dispensaries and other informative medical marijuana websites, and I eventually navigated to a place that could find me a pound of Indica bud (various strains) and deliver it to my house (it’s since been processed). I had to scan my driver’s license and marijuana card and email them over to the company: very official.  The amount that I had to pay for my take, though—$3600—was in cash, and is a “donation”. The “donation” language is completely ingrained in the marijuana dispensers, because the law in Washington doesn’t make any provisions for how the marijuana should change hands; and federally, selling drugs is trafficking, and is a felony. 

I discovered what may become my pet editing project in surfing through all this drug stuff: every single one of the websites I saw had typos, grammatical errors, and/or other unprofessional-looking issues with language.  I should at least be able to help legitimize medical marijuana in a linguistic way. After the way I’ve been feeling today, though, both with doing things around the house and with writing this entry, I have a newfound understanding for the sloppiness.  Does tidiness really matter? I keep asking myself, before lying down again and staring at my toes, or the patterns of shadow on the ceiling of my bedroom, or the backs of my eyelids.  

On the evening of my delivery, the guy, whom I know by a first name only, called a couple times; first to say he was running late, then to find out exactly where I was.

“Is there off-street parking, or a driveway?” Marijuana Man asked.

“Uh, no, there’s not,” I replied, hesitantly.  “It’s just street parking . . . I mean, we have a short driveway, but . . . just how cloak-and-dagger is this?” I finally asked, and he laughed.

“No, no, the street is fine.  I’ll be there in five minutes.”

The deal came off perfectly easily, the first batch of oil went as expected, and now all I have to do is take a tiny bit every day, and see what happens.

Wake me in a couple months.

Solid

The blogger interface on my cell phone only allows me to post a title, not an actual entry, which is why yesterday’s post about my tumor markers, entered from the clinic between appointments, was a surprisingly succinct commentary on the current state of my life, as compared with most commentaries. Such as this one.  

Today’s title is, of course, an increasingly less obscure reference to the state of my bowels.  They were, this morning, almost too, as these things go. I am having a real milk latte to compensate, but a smallish one.  I’m taking pains to not share it with Hoover.

There were a couple notable things about my appointment with Dr Specht yesterday.  One is that she said she was not, at this time, going to ask me to reassess my experience with Lapatinib and try it again, maybe starting at one pill per day and working up to maybe no more than three; no, she was not going to ask that at yesterday’s meeting, but that perhaps in 3 weeks, or 6 weeks, we could get together again and discuss.  She did ask, in the absence of asking me to reconsider Lapatinib, that I please not deny the possibility, completely, of ever taking it again, at this time.  

“Well,” I came back, “it’s a good thing you’re not asking me to reconsider today, because the answer would be a resounding NO.  It was the WORST THING I have ever experienced in my 12 ½  years of breast cancer treatments.”  I think that’s true even taking into account the intubation and bedpans of PCP in 2008, because at least then I was in the ICU of the hospital, with my own 24-hour butler (or nurse—hair splitting, really), and enjoying some pretty bad-ass psychopharmacology.  

“Besides,” I said, “I have a couple new things I’d like to try.  These are pretty out there,” I said, “and you’re going to think they’re crazy, and you’re definitely going to think one of them is crazier than the other.”

“Okay,” she said, nodding and looking doubtful. “This is not in the absence of all treatment, is it?” I assured her that Herceptin and Navelbine could stay on the roster for now. Dr Specht finds me, and my flamboyant turns of health, a bit difficult to understand, and maybe even to accept. I don’t fit neatly into very many boxes (this being a notable exception). 

“First, sometime this weekend I will be making my own hemp oil,” I said.  “No, I’m not going to be smoking pot, because, fun as that is, the curative powers of the marijuana plant come when you extract the oil and ingest it, in small doses, over two months. They say that’s enough to cure most cancers.”

Dr Specht’s look of doubt increased, and I understand—I’m not convinced, either, that hemp oil, even rich in cannabinoids and whatever else, will cure my cancer.  But the side effects are pretty minimal, particularly if you take the suggested dosage of one rice grain’s worth per day, so—worth a try.  An aside about the whole medical marijuana establishment: I believe I have found my first editorial crusade.  There is not a single medical marijuana website out there that I have seen—and I’ve seen many in the past month—that is free from typos and grammatical errors.  I will happily volunteer my time and skills to legitimize, if only in a linguistic way, the use of this plant.  

We finished up our discussion of the hemp oil I was going to make, the process, the expected results, etc, and then I said, grinning, “Okay, and now for the one that you’ll think is REALLY crazy!”

Dr Specht looked alarmed.  “What?” she exclaimed.  “That wasn’t the crazy one?”  Dr Specht is young, about my age (I think a couple years younger), but is definitely dedicated to her beliefs about Western medicine. This is good—she does excellent work, and knows her stuff really, really well.  But I am in a new wave of young cancer patients who are living with their cancers and therefore integrating their personal health systems from all sorts of arenas—and I’m putting all those usual arenas—and more—right in her face.  This is also good.  As she grows as an oncologist, and continues down the path of her career, perhaps for the next 3 or 4 decades, it will be good for her patients that she's already heard about some of the “crazy” stuff out there.  And she did offer me the six weeks just so I could try my things.

“Nope,” I said.  “This is the crazy one:  I’m going, on September 15, to visit an energetic, spiritual healer who is also a medium.  He can release dark energies from people’s bodies and help them heal physically.” She smiled and nodded. “He wrote a book,” I went on, “and is pretty clear that all he can do is help release energies and, for those who are interested, help explain where they're from—but for any healing to stay, the patients themselves need to work through the issues that allowed the energy to come around in the first place.”  With a final nod, Dr Specht moved back to the roundly physical, and asked about my eye issue.

“I got a steroid injection into the eyeball a couple months ago,” I said, “and I think two months is about as long as the effects of that are supposed to last.  I see the eye doc again on the 15^th.  Oh, in fact, the morning before I see the healer!”

“Don’t tell him!” said Dr Specht, “And see if he figures it out on his own!”

“He doesn’t want any of his clients to tell him anything,” I replied.  “He learns it all from his guides and theirs!”  

At lunch yesterday after this appointment, friend L suggested I wear a thick turtleneck to hide my port and my faux teton, and I called her a doubter, too.  I’ll probably have one eye dilated when I arrive at the healer’s, though, and that will be hard to hide.  I’m not a complete credulous rube, though.  I think I’ll be okay.

And now, much as I’m sure I need to re-edit this post, I don’t have time.  Riding, horses, next on the agenda today!

Markers Down from 81 to 68!

Too Soon

In celebration of my decision to just say no to poop pills, I made myself a giant latte this morning, my usual—split quad grande with whole milk—after days and days of being careful about the caffeine/lactose ratio (the combo can be quite the roto rooter).  I had been having a mere 1 shot americano or some such thing, just enough to stave off withdrawal headaches on top of everything else.

Um, yeah.  Guts not ready for the big time.

I maybe made that choice incorrectly (okay, there’s no “maybe” about it), but at least I made another choice correctly: I moved my paper med hemp “cards” from the bentwood box where I normally set my coffee, and put them on the floor behind the big comfy chair in our living room.  I haven’t been able to train myself to not leave my coffee unattended on that box, and Hoover, contrary to somehow learning on his own that I’d rather he didn’t sample beverages that I leave around at dog level, has become quite the sneaky fiend when it comes to helping himself to drinkables.

Anyway, I had realized that I needed to abandon my drink but had not yet dumped it out, and was down at the other end of the house availing myself of the facilities, when I heard a terrific CRASH.  “HOOVER!” I yelled and, as soon as possible, raced into the living room. 

Oops.  Little Dog (as we sometimes call him, since he was little when he came into the house) had made an error in judgment, and shattered glass (from one of our Bodum vacuum insulated double-walled mugs) and latte were splattered lavishly over the papers on the bentwood box, the computer power cord on the floor, and one or both shoes of several pairs that seem to migrate here to recline under the ottoman.  

Hoover was nowhere to be seen.

My pot cards were dry as a bone.

I did a quick search for Hoover, found him cowering guiltily on the dim landing of the basement stairs, and tossed him outside. I didn’t even toss him particularly meanly—after all, I had placed temptation, yet again, well within his reach—but still, some recognition of his badness was necessary . . . but also, I didn’t want him to get glass in his paws until I had cleaned up.

I had to call Taya and postpone an appointment I’d been very much looking forward to, because the drive to Lake Stevens seemed like a bad idea, and so I’m disappointed about that.  On the other hand, Hoover, who is a big chickenshit about loud, unexpected crashing noises that he has caused, may think twice before helping himself to my morning latte again.

N.B. While composing this post, I received a call from Eliza at the SCCA, saying, with great joy in her voice, that my three-drug mash-up of Herceptin, Lapatinib, and Navelbine had been, at long last, APPROVED!  And so now I will, in fact, still have to tell Dr Specht, tomorrow in clinic, that I am NOT, NO WAY, NO HOW, going to take Lapatinib in ANY dose, for ANY amount of time, EVER AGAIN.  Sigh.

A Stand

This afternoon I called up Deb, Dr Specht’s nurse, so that I could tell her to pass on that I was NOT going to be resuming Tykerb/Lapatinib/Shits Unlimited after my two-day doctor-prescribed reprieve.  My taste of poop-free liberty has been so sweet, so restful, and was so immediate, that I have no doubt that the drug was not the right one for me.

This morning I got a call back (!) from my case manager at GEHA, my insurance company, explaining why they were loath to pay for both Navelbine and Lapatinib.  She said that, according to GEHA standards, if a combination of medicines has been approved by the FDA then they pay for it; if a particular combination has not been approved by the FDA (which is the case with Herceptin, Lapatinib, and Navelbine all together; Herceptin with either of the others is fine), then GEHA considers any use of the combination to be a “study”, and they don’t pay for studies.  The very nice lady on the phone said that this was because they didn’t want to accidently pay for toxic combinations for people.  She also told me that my doctors had 6 months and 3 chances to appeal . . . but I had to wonder . . . at least for me, maybe the combination of Herceptin, Navelbine and Lapatinib WAS toxic.  It certainly felt that way.  

I know that denying—me personally, not my insurance company—a drug that could potentially reduce my cancer load (bone-based at the moment) is theoretically risky.  But unlike Spring of 2007 when I was just done, not willing to play cancer games anymore, and actively gave up all treatment, I am not done.  I know that, for the time being, I need to be treating this cancer.  I also know that there’s no point in a cancer treatment if it’s going to kill me before the cancer can.  

Anyway, I do have a couple things coming down the pike (turnpike, I assume?), including Healer and Hemp, and without Lapatinib gumming up the works (the insurance works, obviously, not my works), Navelbine is an easy in.  And while I’ve been writing this, Deb called back and said that of course I could quit Lapatinib—it was entirely my choice—and she’d see to it that everyone knew and Dr Specht and I will talk about the future at my Thursday visit.  

My throat is back to normal today, and my hands feel less dry, my face looks better, and although my guts have continued quite loquacious, I’ve been able to pass gas and only gas (I think . . .).  

I am so relieved.

Shitty

Well . . . the desensitization that Witch Doctor Dan did for me last week over my Lapatinib, after my first horrendous morning of 5 diarrheas and almost as many Imodium pills, gradually wore off over the week.  It sustained well enough and long enough for me to have quite an enjoyable riding lesson on Friday afternoon (although I was a tiny bit weaker than usual due to lack of proper food/liquid processing), but by Saturday morning my body was fully re-sensitized to the noxious pills, and by this afternoon, today, right now, my sensitivity is so over the top that pretty much all I can do is flop around on my bed, the last dregs of liquid (not already deposited in one of my tri-hourly trips to the toilet) leaving my body in thickly salted, exhausted tears (oh, well, and I can muster the strength to complain about the experience).  

Seriously, this drug is THE WORST THING EVER.  I would MUCH rather be bald.  Again.

I met with a nutritionist at the SCCA this morning and explained my predicament which was bad, yes, but not as bad (I was led to believe) as some:  I, at least, experienced some respite (I am not, for instance, typing this from the privy), and I had not had to use the extra pants/panties (trousers/pants to you non-American Anglophones) that I’ve been carrying around with me.  Oh yes, I have been carryng extras.  

I took only ¾  of my dose last night, hoping to calm things a bit, but no luck.  Lapatinib, and Lapatinib-induced diarrhea, will not be calmed.  Yesterday I had at least 5 Imodiums and 2 Zofrans; today I’ve had 1 Zofran but 6 Imodiums—the crap isn’t even slowed.  Or rather, IF it is and what I'm experiencing is an improvement, I would be dead by now without the pills.  Or living in the tub.

Every time I have to pee, I do number 2 too.  And number 2 frequently calls upon me in the absence of having to pee.  My hands are dry.  My face looks dry.  My voice is lower and scratchy, and the back of my throat has that long-forgotten I’m-camping-on-the-equator-for-two-weeks-and-water-is-precious achy feeling.  A bit tight, a bit sore.  I haven’t felt very hungry, because my guts are discombobulated, but I have been weak and dopey . . . so, I’m guessing I need some food, as well as some fluids.  

But every single thing that passes through my mouth races, burbling and chortling with evil glee, through my stomach and around the twists and turns of my small and large intestines, to come shooting flamboyantly out into the splash pool, like under-demons cavorting at Hades’s water park.  Seriously, they make so much noise that several times Ian has asked, with decreasing incredulity as the days go by, if that noise is in my belly.  

As I was already at the clinic this morning for the nutritionist (at 8:00am!), I spoke with my nurse (well, her Monday fill-in), and Dr Specht told me (via the nurse) to take two nights off from pills (OH THE RELIEF), and she let me get my blood drawn.  This way, when I have my meeting with her on Thursday to talk about how the Lapatinib is going (“Not so well,” I might say, or “somewhat poorly,” or maybe even “THIS IS THE WORST THING EVER.”), we’ll also have access to my new (and hopefully improved) tumor marker scores.  

Okay, folks, I’ve just finished a supper of Campbell’s Condensed Chicken Noodle Soup (the full-salt kind—nectar of the gods!) and toast, and I am, as is my wont this past week, exhausted, so I’m off to bed.  

I will keep you posted.  Never fear.