2018 06 26: Where Have You Gone, Dr. Jaaaaaaaay-ay-ay?*

*to the tune of Don Maclean's "American Pie"

Well, well, well! It's been a while, hasn't it? I got sidetracked as the second half of May engulfed me in a wave of "school's (almost) out, camps are starting and you should have registered in January" insanity, and after a couple of weeks, I realized that no one was asking me where the next blog update was and it was both a disappointment (for obvious reasons) and a relief (because I'd been starting to obsess a bit over the idea that I had to post consistently). So then I just started navel gazing rather than thinking and writing. I took a mental vacation, I suppose. It was sort of nice! But I discovered that the reason why I don't take mental vacations very often is because I get a little too cozy with my life-long nemesis, anxiety, and her BFF, depression. So the mental vacation is over and you'll all just have to pretend you're really eager for regular installments if I fall off the posting wagon again, if you don't mind, K? K. 

Although I checked out in some key ways over the last 6 weeks, life was still chock full of excitement here in the Mile High City. I have a phobia about rereading my previous posts, so I can't remember if I told you all or not, but - all of the hyper-exfoliation and barfing in the nation's capital was worth it! My scans in May showed actual shrinkage of my existing lung lesions and no new spots. That's the best scan news I've had in more than a year and a half. You'd think I sailed around an easy May and June, but of course, life is nothing if not unexpected.  I had all sorts of fun things happen to me, such as another round of shingles (why?!) and a trip to the ER after one of our beloved children accidentally whipped a wooden building block my way and struck me in the temple.  Since head wounds and blood thinners are not a good combination, we had to hustle over to the hospital for a quick head CT. All was well inside the ol' helmet, as my brother likes to call it, but I did have a spectacular bump and bruise that lasted for weeks. That darling kid of ours sure has a wicked throw (thanks, lacrosse!)! I'm sure other things happened, too,  but what with the head injury and all, I can't remember any specifics. 

A bump, bruise, hair on the lam, spots: I'm glam

I do know that I am still plagued by all sorts of bordering on the bizarre side effects from treatment; I even have some new ones to share!  Since I started the irinotecan/Vectibix combo in January, I've told you all about my skin issues and perhaps mentioned that my hair was falling out? Well, yeah, the skin issues continue but I realize that I've pretty well exhausted that topic. How many times can I tell you about the flakes and the welts and the burning and the weird acne-that-isn't-acne and so on? I think we've hit our limit (But one last comment: after very extensive testing, the very best body and face cream is...Josie Maran's whipped argan oil body (or face) butter. Seriously amazing and zero burn. I love you, Josie Maran! Also, if you have a big brother who sends you fancy gifts just when you really need them like I do, La Mer's eye cream cannot be beat.) So. I'm going to fill you in on the hair situation. My hair continues to fall out, which really is a testament to the fact that I have far more hair than the average human rather than the (fake news!) idea that irinotecan only causes moderate hair loss.  Early on, I started measuring the daily hair loss in increments of domesticated rodents - a mouse sized loss, a couple of dwarf hamsters on the bathroom floor, and so on - and at this point I would say that I lost about a rat a day, every day, from early February until late April or early May. Then my hairdresser suggested I stop putting my hair on top of my head in my usual messy ponytail bun and switch to loose braids. It worked like a charm and I started losing about a hamster a day, max. Sometimes even just a flat hamster! And then I found a bald spot on top of my head and freaked the hell out. I started buying all sorts of serious hair accessories, including what amounts to a very lovely lady-toupee (not to be confused with the lady pens of Ellen fame). I put my hair in braids and didn't touch it for days at a time. This meant that not even a dust mouse was lost for several days - yay! - but then there would be guinea pigs of reckonings, if you know what I mean. 

I'm at the point now where ALL of my hair easily fits into a regular old hair band, and I can (very, very gently) wrap it around at least three times! The texture also has gone to hell - it feels like a weird cross between totally gnarly terrier hair and silky smooth baby hair.  I still have my eye brows, though, which suddenly look HUGE and DARK, so I resemble what I suppose would be the scary Muppet version of myself. Should I have the scary Muppet eyebrows threaded? Should I wax them and run the risk that my skin will fall off along with the extra brow bits? Should I just put band-aids over them? Get longer fake bangs? I have no idea. There is no handbook for eyebrow care, irinotecan patient edition. And as if there weren't enough going on in the head and neck area, another possible side effect of my trusty Vectibix is (and I did not make this up) "extra long eyelashes." Seriously.  I've always done okay in the eyelash department, but these days they fall out easily and yet also are growing super long, like daddy longlegs...legs. To complete the look, the leg lashes sort of... lean on each other, drunk college student style. Altogether, I'm quite chic. Especially when you add in a sudden and unexplainable bout of serious edema! I'm basically a weeble-wobble with whom someone took creative liberties. 

just going to leave this here...

On a somewhat unrelated note, I also have what look like ingrown toenails, but aren't. This is another possible side effect from Vectibix. Don't ask me what this means or how a faux-ingrown toenail is different from a real one because I have no idea, because it looks like an ingrown toenail and it hurts A LOT. I've never had a "real" ingrown toenail, so I don't have any comparison point,  but they worth at least an oxy, and two when they're really angry. I have the sinking feeling that a toenail-ectomy may be discussed in a future blog post. Sorry in advance.  

I think that sort of catches us up a bit! Denver is set to hit 101 on Thursday, which is chemo day. I would complain about the upcoming chemo, but all I can think about as I contemplate this week's  appointment along with the weather is that there are millions around the world, significant numbers of whom are suffering from complicated illnesses such as cancer, living in unthinkable conditions, without access to cutting-edge medical care - or, perhaps, any medical care at all. Meanwhile, I'll be sitting in the lap of air-conditioned luxury in the infusion room at a top research hospital on Thursday, looking out the huge windows at the beautiful Rocky Mountains, having people fetch me ice water and care for my every need, and my husband will be at my side and my children waiting for me when I get home to a house that really exceeds expectations in every conceivable way. It really gives a girl perspective, you know? 

I'll be wearing the lady-toupee (modeled here) on Thursday.