So, I totally feel like I'm going to toss my cookies this morning...gross right? Think I'd be used to this kind of thing, right? Or at least have some great meds to keep that from happening, right? Weeellll, this time is a little different. This "I wanna yak" moment is brought to me by the letter M for magnesium. And it ain't even the mag making me wanna yawn rainbows!
Today is the day I find out if my body has managed to hoard enough magnesium in it's nooks and crannies without the help of IV infusion (read: I have to be able to take enough magnesium orally to maintain a good level) to allow me to have my CVC taken out this week. THIS WEEK. GO body GO!
Why is magnesium so damn special you say? Well, the anti-rejection drug tacrolimus, which myself and most other transplant patients take, causes the body to be unable to maintain magnesium levels (mag is counted as an electrolyte, btw). When the body loses magnesium, one can run into problems ranging from muscle cramps to cardiac issues- all on the list of crap someone who just had their immune system obliterated and is now trying to grow a new one DOES NOT NEED. Yikes. Since transplant I have had both oral and IV supplement's of "Mag Ox" (magnesium oxide- giant 500 mg pills), "Mag Protein" (magnesium protein- low mag also causes low protein- 133mg pills) and daily infusions of varying sized bags-o-mag. Total, and if count is correct, I consume 3798mg of mag and friends daily, not including days when I've had mag infusion. That's a lot o'mag. Yet still, whenever the lab checks my mag level, it's a touch (or a bunch) low. Which means more pills. Which means...well, google "alternative uses for magnesium suppliment' to find out. :/
Having only had one day up at clinic last week (GAH!! WOOOO!), my team decided to challenge me to keep my fluid and magnesium up to snuff while reducing my infusion further (only three days last week!!! no tubies this weekend!) and check me out on Monday. Today.
Whelp. Here I am. Monday morning. Laying in mah pink bed, missing my husband and FREAKING OUT with EXCITEMENT that there is a possibility that I could hear those beautiful words "You CVC removal appointment is scheduled for....." in the next few hours. As long as that magnesium number shows up close to 1.7 or higher (I have images of figure skating judges at the ready with signs to give me my score as I walk out of the lab today....no cheating Russia!) Isn't it ridiculous what becomes exciting these days?
As much as my CVC has been a godsend- no needle sticks, lower risk of infection from fewer needle pricks, fast infusion of necessary drugs, providing the means by which my magic donor cells entered my body, you dear readers know that I still hate the damn thing. When it was first put it in August, the procedure was PAINFUL on many levels. Originally, I had three lumens, and they were HEAVY. They got tangled in my bra, in my hair (well, only for 24 hours, I shaved that shit off the next day), the bandage was huge, all of the muscles in my shoulder, neck and chest cramped down on it, uncomfortable stuff. Not to mention all of the psychological tweeks involved in seeing something hanging out of your chest that is IN A VEIN IN YOUR HEART. Creepy. At the end of my inpatient time post transplant, the three lumens were removed and replaced with two brand-spanking new lumens. Much more better:) And I had begun to 'get used to'- not be as annoyed by- the damn thing.
When my GVHD showed up on my skin, it nestled in nicely under my CVC dressing, sneaky bastard, because I couldn't put my steroid cream on the area (must be sterile, you know). Thank god that was fixed due to the oral steroid treatment...I was going to have to take matters into my own hands on that one...wasn't gonna be pretty- me ripping off my dressing and taking a fork to the skin to itch for relief (not so sterile either). So between the scaring and sensitivity from the actual GVHD, oral steroids cause skin thinning and easy bruising as well, dressing changes had been....um...FUCKING PAINFUL. A few weeks ago, after suffering through just one too many dressing changes where my skin was literally being torn off by the adhesive from the derma-patch (big white dressing that most patients have) and discovering that one of the stitches that holds the actual port onto my body was becoming embedded (bad news, makes for ouchie removal), Mom and I threw up our hands and I went to IV team to ask them for mercy. And mercy they gave me in the form of a brand new squishy pink (!) dressing that, no lie here, changed my friggin life. I still hate the lumens, the whole thing creeps me out, but I'm now comfortable physically (kinda). The old patch made my bra straps run right over the insertion sight...ouch...and stuck out of the neckline of nearly every shirt I have. It was stiffer so sleeping on it felt like I had wedged a small notepad in my bra and was trying to curl up around it. Not so fun. The thing got dirty easily, that edge of band aide lint kind of dirty and would peel off at the first sign of moisture (read: working out or yoga made this thing run for the hills). Now? It hides under nearly all of my clothing, it's padding prevents my bra straps from becoming torture devices, it stays put during and after physical activity, I don't feel it at all when sleeping (except for when my lumens get stuck in my armpit, which is TOTALLY COOL...but I won't blame the dressing for that...). In fact, it makes me not mind the thing as much. On the topic of the lumens, it is often difficult to figure out where to put them when I get dressed. What does that mean, you say? Well, if I stick 'em in my bra, it looks like I have a bizarre third nipple, if I move them to the side toward the center of my chest, you can see the clamps. Other side? Armpit tangle time. This is something SOMEONE should have coached me on! Jeez.
The emotional pain (yes, I will use the word pain) of having this CVC has been the toughest to deal with. It's like a badge of suffering stitched right onto my chest. How do you practice non attachment when something is literally attached to you? Now that my time with my CVC is drawing to a close, I've started to make an informal mental list of all of the things it has allowed me to do, rather than the things it has kept me from doing. This list, I hope, will be very handy should I find out today that my body is not quite ready to release this particular hunk of plastic.
So, off I go into today, which may be my last day with a 'post transplant' schedule up at ATC, it may not be, but hey, wouldn't it be friggin' sweet if it were? Tomorrow I'll see my endocronologist about my wacky, but controled, blood sugars and Thursday, I GET STRIPS OF PAPER SHOVED IN MY EYES AGAIN!!! Yeah, you know you remember that post! Man, I remember when Thursday was "ThirstyThursday"...not "Torture Thursday" (which would sound better as a Tuesday anyway). Maybe, just maybe, I'll have another proceedure to add to this list.....
Hoping that you all had restful, joyful and warm Thanksgivings surrounded by loved ones. I was blessed to have that this year:) Thank you for the messages of support, the cards, the e-mails, the text messages, everything, dear friends. Everytime P and I hear from you it's like seeing you and hugging you in person.
Much love y'all!
ALSO! a HUGE congratulations to my friend Sarah who finished her last inpatient round of chemotherapy over the holiday and is doing SPECTACULARLY well. Rock on sister!!!!!!