And Then There Were None

…that TBC should’ve included another ellipsis or two, huh? Sorry for falling off the earth. I’ve actually spent the last three months traveling the netherworld with Dante, bouncing back and forth between his various circles of Hell. Not fun; repent while you can.

Worst moments happened shortly after my last post and involved several transfusions—two platelets and a sack of blood to be exact—and the screaming deaths of my angry, vindictive hair follicles. My white blood counts did end up dropping to 0 for several weeks and my platelets were down to to 4k. [That is VERY low. Depending on whom you ask, normal levels range between 150k–350k.]

Regarding the transfusions, I’ve learned a lot about typing and the like, so if you’re really desperate and dare to live on the wild side, I got you covered unless you’re O-. If you’re O-, you can give to everyone but only take from other O-‘s. All give, no take—blood is just as unfair as humans!

Fortunately you only need exact blood typing for RBC transfusions; there’s more flexibility with the platelets. Now I bet you’re thinking, “Crap, I don’t even know my blood type, what if I need some sort of transfusion??” Not to fret, you’re not alone. In a super scientific poll I conducted, no one could remember her blood type. Plus the hospital retypes you EVERY SINGLE TIME, so you could forget and forget and forget forever without being given the wrong blood. And nowadays the blood is screened, fried, zapped, and microwaved before it’s allowed in your body, so no need to worry about contracting a *known* disease [ha ha]. Glad I could assuage your sudden concern.

Now, about the hair: I wasn’t allowed to do anything that could potentially cause me to bleed, so razors were out until my platelet count rose. No problem, the hair just falls out, right? Wrong. Mine flat out refused to cooperate. Remember that short haircut I got right before starting? Nope! Not nearly short enough; I should have shaved my head completely, but vanity and the fact that I hadn’t lost it after the other three treatments (with the different drug) clouded my judgment. Apparently it doesn’t happen to everyone—not even the people in BMT [bone marrow transplant, i.e., PAs who should know everything about chemotherapy] knew what I was talking about—but a lot of people going through chemo have horrible dying-hair-follicle reactions. [I had to search online forums. Other patients tend to be so much more helpful than doctors.]

My individual strands are not thick, but cumulatively I have a ton of hair with a ton of tightly-packIMG_1896ed follicles. When the follicles got together for their last-hurrah bender of a death party, the pain became so bad that I couldn’t lean my head against a pillow without extreme discomfort. (Never in a million years could I have dreamed up this consequence.) Of course, my platelet levels stayed down for long enough that I wasn’t able to remove the offending strands with any great speed. Instead, I was forced to wake up every morning with a zillion tiny hairs in my hats and then see a zillion times a zillion still on my head.

IMG_1904The forums suggested a multitude of products to gain relief: 100% pure emu oil, raw African shea butter, a variety of numbing creams. I tried them all and was about to go for the pure Aloe Vera butter until I decided the creams weren’t doing anything other than greasing up my head and hats. Finally I stumbled upon the best idea of all, lint rollers! I was sick of standing by helplessly, so I took those lint rollers in hand and furiously went to town. [I even made “how to” videos to send my sisters, but they cut off midway through–tragic loss.] No idea how many sheets I had to use, but slowly (very¬†slowly), the hair started to disappear from my head and leave super attractive tufts that hadn’t yet died. At my next appointment, my PA tooIMG_2011k one look at my head and started to get mad that I’d so flagrantly disobeyed him until I smugly told him the secret. Needless to say, the entire department thinks I’m totally insane (no argument here). My dad and I eventually took his electric razor to my head, and I proudly strutted around bald for a few weeks. Even though my blood levels continue to fluctuate (3 months out?!), the hair has started to grow back again, still somewhat patchily but thankfully not painfully!

All that background is the lead up to today, the day of my MRI and some supposed answers (which explains why I’m still awake at this hour). Yes, the title of this post is a reference to the famous Agatha Christie murder mystery, but only in title and certainly not in plot. [I read it too long ago, but the premise is one party guest being picked off after another. Also, it seems Dame Agatha was a downright racist as I believe the original title was changed not once, but twice, for insulting two different ethnic groups, something I most definitely do not condone. (At least someone had the sense to change the name somewhere along the way.)] I just like the dramatic feel of the title and am (superficially, no murders planned) referring to it since I have zero days left to employ my ignore and avoid tactics.

I offer a prize to anyone who takes the MRI in my stead! Then we can just scream MIRACLE! and move on with our lives. But seriously, if you read this post before 14:30 CST on 9/29/15, please send some positive vibes my way!!

Hair No More!

A lot of you have already seen my short haircut on Facebook, but I wanted to post it on here, too, for those of you who aren’t regular FB users:

short hair

This photo was taken after a very long session of meticulous cutting, razoring, blow-drying, straightening, and setting. In other words, if it weren’t for my amazing hairdresser, my hair would not have turned out this well. Why? Because I have bad hair. Trust me when I say my hair is NOT meant to be short.

Still don’t believe me? Below is a photo of me au naturel when I woke up this morning:

bad hair

Yah…so you all get the Sideshow Bob reference now? If it were October, I could pretend that Halloween was my favorite holiday and dress up as Bob every single day. Or even better, I could get some small eggs and be a tree with a large bird nest at the top. Pretty sure the eggs would stay put all night.

I applied about half a bottle of men’s hair gel because I thought the hold might be stronger, but it was absolutely terrible. Literally, the worst hair product I’ve ever used. First, strong hold “flexible control” is a bunch of bull; even with a headband, the volume kept rising like a souffl√© on steroids and the strands kept popping out–boing!–like that gopher arcade game. Unfortunately, unlike in the game, I can’t exactly bash my head with a giant mallet, especially since slices of my brain are already all over the country, including the brain storage facility at Roosevelt Hospital. [Okay, it’s probably just a regular lab, but I imagine a giant room full of metal drawers that looks like a morgue, but instead of dead bodies, there are neatly filed blocks of brain stored in each compartment. When I call the lab to request more brain–which I’ve done about five times–the technician goes to the A’s and finds my tissue (which is stored in some jello-like substance) and cuts off a piece to be stained and sent to hospital X, which indubitably returns one more non-diagnostic analysis. Too much imagery? I hope no one’s currently suffering from tricuspid-valve regurgitation.]

Second, when I looked at the dried product up close, it looked as though I had dyed my hair salt-and-pepper because there were THAT many gel flakes. Seriously this stuff should be used for a shampoo commercial’s “before” photo of someone with dandruff/psoriasis/leprosy where the “after” shot of the model (my sister, Stephanie, obviously) showed the amazing results after only one use! [But I just learned that psoriasis and leprosy rarely coexist, so the commercial ought to be for one or the other. Fun fact of the night.]

Anyway, the point is I had my hair cut, which is a fine but very important distinction between “I cut my hair.” [My hairdresser asked me if I intended to “touch up” parts of it on my own. (She knows how I like to give myself impromptu, super-stylish trims that always turn out looking fab.)] If by some miracle my hair doesn’t fall out–which from what I understand is not a possibility, but hey, I have a special body–I’m gonna be knitting A LOT of hats.

Will post again tomorrow because I didn’t even mention what’s changed with my treatments and the timeline. (Are you in suspense?) The hair simply had to take precedence.

Update on Timing

I’ve tentatively scheduled my treatment to begin on Tuesday, June 23rd.

Not sure how accurate this date is because it all depends on insurance pre-authorization. Most likely the treatment will get rejected first since a) there’s no real diagnosis, and b) whichever diagnosis code is used has a different, standard treatment. The doctor will have to appeal, and it will be a minor miracle if all the red tape is worked through in less than three weeks.

In the meantime, I have to get a cardio exam and preliminary blood tests to ensure I don’t go into the treatment with a dysfunctional ticker or latent infections…and yes, Lyme disease is infectious, and yes, it’s been discussed with umpteen doctors, none of whom actually knows what he’s talking about since Lyme and lyme are such pernicious little spirochetes. [And therein lies the rub and explains why I’m rather hesitant to undergo this sort of treatment when the only tests to ever come back positive have been various forms of lyme. Yee-haw!] So, medical community, I am (very) reluctantly putting all my faith in you and your “false” positives!

I’ll put up some more countdown dates for the various upcoming appointments, but don’t be surprised by changes.

I’m also toying with the idea of having a hair cutting party for all the Dallasites who have always wanted to butcher someone’s hair without the ensuing friendship fallout. Since I’m not interested in finding chunks of hair on the pillow or in the shower, I’m going to cut my hair really short anyway–why not have a little fun with it? So if you’d be into cutting some crazy topiary hair patterns or think giving someone a mohawk would be fun, leave a comment below!