Monday, November 29, 2010

You Got Plans for December 10th?

I do:)

That's when I'm COMING HOME!!!!


The boring stuff: mag level was great today (happy face!) but they aren't taking out my port until next Thursday (kinda sad face, but still happy face) juuuuuuust in case, all of my other blood work looks awesome so they're 'testing me' until this Thursday without IV fluids. I get paper shoved in my eyeballs again this Thursday and will see my Endocrinologist one last time tomorrow morning. My 100 day bone marrow biopsy is scheduled for next Tuesday, final powwow with Dr. DeLima and team next Thursday and then....AND THEN.....


Winding it down y'all! It's so hard to believe this is the bookend week to the week of testing in August. I say 'bookend' because it's not the end end, it's just mirroring all of that check-me-out stuff we did then, just after basically putting my body through a meat grinder... I plan on updating often this week, probably as often as I day waaaay back when because, well, paper in eyeballs is interesting stuff:)

Can't WAIT to see all of you in properly chilly PA:)

Much love y'all!!!

I need magnesium like I need a hole in my chest...oh, wait....

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 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 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!!!!!!

Thursday, November 25, 2010

Giving Abundant Thanks

In these quiet moments, before the sun rises, before what will be a busy and joyful day begins, before the 'official' giving of thanks commences, my heart is swelling. Though there have been many occasions this year to give thanks, to check in and take stock and be really, really thankful, to feel deep gratitude, having one day set aside, one day of communal giving of thanks, where we take a moment to say aloud (or on the internet;) ) our thanks to one another, is pretty overwhelmingly special.  This year, of course, feels especially so.

As this day dawns, with my husband sleeping just beside me, my brother and sister slumbering in the other room, Mom and Dad safely resting at a hotel on a few miles away, my heart swells with thanks for them. For family that is together, all of us, for this holiday. We may be far from our house, but home is right here today. My heart, and of course Phil's heart, reach home to Philly for his dear family, wishing we could be with them too. Knowing that they are gathering with love at his Nana's this evening and are all safe and happy (some with new bundles of joy!) is reason to give abundant thanks, though our hearts ache with anticipation to see them soon.

There are so many thanks to give this year. So many blessings have been granted, blessings in all sizes, some quite obvious, others very subtle, all humbling, I want to open my chest and let my heart shout to, everyone, to the universe "THANK YOU!". For the love and support that has surrounded and lifted up Phil and I and our families, we are all thankful. A man I greatly respect said to me, just before leaving school for the summer in June, simply "You are surrounded". Such powerful words. Yes, we have been and my god, we never knew there was such love and kindness in the world.

Today calls me again to remember and give deep thanks for the reason I am here writing this blog, my blessed donor.  Last night, as I was moving through my bedtime ritual of tape and saran wrap and lotions and ointments and pills and pin pricks and needles, I was suddenly overwhelmed by the presence of him, felt his life coursing in my veins and pulsing in my bones, and was stopped in my tracks. This day might have been quite different for all of us had it not been for this man. It is my deepest hope that he too is surrounded by his family today, that he is told that he is someone to be thankful for, that he feels comfort and love and joy. That he can maybe even feel the thanks radiating to him from another family. To say that I am thankful for my health is an understatement.  Rising this morning, a little less bald, a little stronger, a lot puffy BUT with the ability to say (and this is in writing on my lab reports!) that I am in remission, draws a kind of thankfulness that cannot be adequately described in words. Thank you donor, for this gift, for this Thanksgiving, for this life.

Though I have said the words 'thank you' on this blog many, many times to our friends, today I hope that these words have special weight. Phil and I are so deeply thankful for your friendship, for your generosity, for listening and visiting and for teaching us. For the laughter and the hugs and the tears and the reminders of home. For years of friendship. As I mentioned earlier, this year has been a time of pausing and taking stock of what is important. Let me just tell you, stepping back and picturing your faces and seeing how special each of you are, what good, good hearted people we are blessed to call friends, is more overwhelming than can be imagined.

It is my, no, I'll say our (going to include Phil in this one, though he's still unconscious;) ), sincerest hope that you all have a wonderful Thanksgiving Day. May it be filled with as much joy as you have given, with as much hope as you have inspired, as much love as you radiate. That your table be abundant and satisfying and that your hearts be filled to the brim. That you are surrounded by the faces of those who love you and that you feel their love. That you know that you have made a huge difference in the lives of those that you touch, especially this family down in Houston. That this life, on this earth, is so goddamn amazing.

Happy Thanksgiving and MUCH LOVE!!!

p.s. there are only 10 bottles of Gew├╝rztraminer on the wall... or table, it goes quite well with turkey...:)

Friday, November 19, 2010

And the award for organ of the week goes to....

my liver!

Good job buddy! Your prize get a shout out on the internet (how many internal organs can say THAT?)! Maybe I'll even stick a gold star to my abdomen...

So, WTF am I talking about?  I've been to paranoid about jinxing this to post earlier in the week, so let me tell you what's been shakin' around here.

On Monday, my team (Dr. De Lima, Lynn and Jason, my new PharmD) made the decision to take me off of a bunch of my drugs, switch my anti-viral (I am OFFICIALLY CMV FREE! woo? yeah, that's not the make-me-pee virus. still the Pee Queen), lower my steroid and take me off of the IV anti-fungal drug I've been infused with everyday since my second hospital stay (itchfest 2010). Why is this all so important? Weeeelllll.....

Lowering my steroid to only one pill a day, or 16mg (I started on eight pills a day, or 128mg, seriously mastodon dose, wasn't kidding) was a huge step- it meant that they were testing my body's ability to stave off the GVHD on it's own. I was sternly warned to watch my skin and eyes closely this week for 'flares' or yellowing and to wait until today (Thursday) to see how my liver enzymes fair. They assured that if there were no 'flares' (read: explosions of red, itchy hellfire on my person) AND if my liver enzymes and bilirubin stayed within normal limits, then I would be in the clear to come home on time.  The step of taking me off of the IV anti-fungal and sticking me back on the oral anti-fungal that I was initially treated with (for you Pharm nerds: from caspofungin to fluconozole), was a big 'ole SAT style test for my liver as well as one friggin' step closer (the biggest step) to having this fucking CVC taken out FOR GOOD.  To review: my assignment for the week was to maintain a normal liver function and avoid breaking out into a rash. Easy. I got this. 

So, for the last few days Phil and I have been staring at my (completely clear, if not very sensitive) skin like a nutbags and yanking on my eyelids to be absofuckinglutely sure that no, my eyes are NOT yellow. AAAND GUESS WHAT?

NOTHING! Nothing fucking happened! My skin is CLEAR! My liver EFFING WORKS! I'M COMING HOME ON TIME!! woot!

Soooo, yeah:) We don't know yet what our return date is, or exactly when this FUCKING CVC is coming out, but the important part is that it will happen at some point in the next 16 days. 16 friggin' days. On time:)

On the topic of the CVC, when I asked my doctor about when he thought it would be coming out, his initial reaction was quite apologetic saying "Oh, errrr, eehhh one thing at a time", to which I said "But I won't go home with it, right? It's coming out around day 100, right?" and he said "OH yes, yes, yes, but you know, not for another two weeks or so"....I cried. Cried. Only two weeks (it was 19 days at that point) with it? Amazing. :) One of the best parts of that day was that my best friend, Maggie, was there to share it with me. She took a ton of pictures of her visit, if you're on FB you've seen 'em (or maybe you've just seen the shine from my moon-face from Philly...), some of which I hope to post here with her permission.

Sooooo yeah:) Good news all around, and it was sorely needed 'round these parts. The last two weeks have been kinda rough, between being heartbreakingly homesick, painfully puffy and peeing my brains out every thirty seconds. Though Phil and Maggie being here was enormously healing. On the topic of that other internal organ that was being a motherfucker (eh, that means my bladder), it's better, it's mangable, my bed is dry,  It is exceedingly distrubing how much that virus impacted my quality of  life. Top that with the swelling in my face and chest, oh boy was I a walking, uncomfortable contradiction. Not to be too gross, but seriously? SERIOUSLY? Leaking AND puffing at the same time? Now that's just fucking cruel. But it's better now (well, not the puffing...), and will continue to get better and WE'RE COMING HOME:)

Thinking about returning home, to "normal" life (though it won't be normal for some time), seeing dear friends and loved ones, feeling the chill of a proper winter and looking forward to the holidays...well, I have tears rolling down my face. Returning to my home with my husband, to our kitties, is overwhelming. This road has been tougher than any of us imagined, tougher than I imagined at least.  The warm light of loved ones and comfort is so close, though in reality it always has been. Of hugging and thanking in person those who have helped us and loved us. These next two weeks or so will both fly and drag, but they will pass. Justicia offered clarification on the bike story I wrote about a few posts ago, I am so grateful to her for doing so: we are invited to notice the ground in front of the tire, this moment, not only to avoid focusing on the top of the mountain, though that is when things seem insurmountable. This journey is going to so much more than the end, so much more than home, than savasana. This is like the ending sequence of a really tough class. I'm tired, worked over, maybe sore, emotionally spent and looking toward savasana. That's the time when the most is learned, I guess. It's not about savasana, it's about everything after that and before that and that at the same time.  Maybe this is the time when I'll learn the most from this experience. I hope. J, thank you. The beacon of home can sometimes become so bright that I forget to stay in this breath and this moment, no matter how shitty it is. Thank you for giving your wisdom, it really is like ending a class with you! These are the moments of yoga. The moments of breath and focus. Damn, this yoga is so much harder than handstands and backbends....

Thank you, dear friends. For every reason I have ever typed. We're coming home to you soon:)

Much love:)

Wednesday, November 17, 2010

Rain Bringin' Sunshine (a cancer-free post)

So, I have tons to update y'all on...but I'm waiting until tomorrow because I'm superstitious like that;) In the meantime, lemme share with you something that made my friggin' week ('ll have to wait for that). You know that whole thing where in addition to being a yoganerd, I'm also a big ole music nerd? Maybe that just makes me a nerd...whatevs. My name is Laura and I love classic Showtunes and Musicals. And Glee, which is pretty much the same thing (I have irrational fantasies about having my kiddies at C-wold strap on costumes and perform choreographed dance numbers...but then I remember that that's insane). Cabaret? Hell yeah. Funny Girl? Sign me up. Holiday Inn? Yup. Les Miserables (not technically classic, but oh well)? OMFG.  You name it, I love it and can probably (half-assedly) belt out 98% of the score (including the interludes that no one knows). Also, I may have a mild (lies) love of Rhianna. And Lady Gaga. And Ke$ha (it hurts to admit that).

SO, with that in mind, there is one musical that stands above all. One that makes me spazz out with nerd more than (almost) any other. That musical, my dear patient friends, is Singin' in the Rain. This is a love affair that started when I was a kid and watched it on TCM and thatlove was cemented when my high school put on a production of it when I was a...freshman? Sophomore? I dunno. Clearly being the band nerd that I am (maybe I'm a chorus nerd now?), I was in the pit orchestra, resulting in my ability to sing (or whistle, far more annoying) all of the uh, a few musicals.

My friends, especially my non-Gleek friends, please allow me to share with you the most amazing thing I have ever viewed on television (that might be a lie...).  I give you Singin' in the Rain AND Rhianna...and Mr. Shu...and Gwennyth Paltrow...I'm sorry, I'm sorry, here ya go. ENJOY!:

P.S. Phil and I are TOTALLY cozied in and watching Singin' in the Rain as I type:)

Thank you to you who reached out over the last week, whether in written word or in thoughts sent through the universe. Your support and love and...well, just energy is overwhelming and sustaining and the best medicine on the planet. Thank you for reminding of what is important and lifting my heart, nudging it back to where it belongs. Just, thank you. From the bottom of my heart.


Friday, November 12, 2010

The rising mountain

Today was the kind of day where the tears just flowed freely and my bed seemed like the only sanctuary from...well, everything. Though I did not take up residence in my bed for any inordinate amount of time, only an hour to rest after clinic, and there were a few 'bright side' moments, today was, well, really fucking hard. Those 'bright side' moments lacked luster and hope. My heart just couldn't find peace. I am so, painfully homesick.

Several months ago, before being poisoned and transfused with a new life, before my body changed beyond recognition, before I really knew what struggle was, before my husband and family dropped their lives as they knew them to come and deal with my fucked up body, I blogged about a story my friend and yoga teacher Justicia told in class. The story was about cycling up a hill. A really big hill. How the sometimes, the only way to make it up that hill is to keep your eyes on the road just in front of your tire, because if you look straight to the top of that hill, it will seem impossible to mount. At the time, this hill, mountain as it has since become, was still in the distance. A shadow on the horizon. Now, we are on this mountain, we have made it through hills and ravines, through raging rivers and enjoyed shining moments in the sun. Some of this journey I've done without my best traveling partner, those are the toughest times.  None have I done without another rider next to me (and a pack behind from home cheering me on), but it has felt very lonely.  Now we are nearly to the top. Nearly there. But it seems that the mountain just keeps growing. Like it it rising in front of my eyes and these weary legs are having a hard time keeping up.

Today in clinic, I spoke with my team about the urinary tract symptoms which have persisted all week (and now how a possible name: polyomavirus- Google it, it's fucking strange) and asked about the project treatment and expected recovery from this hell. I was told it could take a month or so to feel relief, that is IF this is all due to this particular virus, which they don't even know yet (viral cultures take a week to yield results). One month. FOUR fucking weeks of pain, running to the ladies room, limited activity (read: I now know where all of the restrooms are at the local outdoor mall and tucked in at least four flours of the hospital) and heavily disrupted sleep.  Granted, in my head I've already subtracted the week I've spent with this bullshit from that one month figure, but the idea of enduring this for another several weeks was nearly more than I could handle today. I'm a baby. And a control-freak (apparently). Not going to lie. Pain, discomfort, interruption to my daily activities or prevention of things that I want to do- these are all things that send me over the edge. I yearn for comfort and control. I've been enjoying a good amount of comfort since my last hospital stay, for that I am hugely thankful and LUCKY, but this new complication feels as though a pile of boulders has been dumped in my path. The drugs they gave me to relieve some of the symptoms also take a little while to kick in (and also have unpleasant side effects like drowsiness and upset tummy), and I have been reminded that "everyone is different, you may not get much relief". Well, I think I have had SOME relief, thank God/Jesus/Buddha/Krishna/Flying Spaghetti Monster, but they're right, everyone is different. Oh, I was also told that blood clots are an exciting part of this virus that I have to look forward to. Think about how you get rid of a blood clot in your bladder...yeah, sounds fucking cool right? Let's just pray that I get cut some slack and won't have THAT to blog about. Ever.

Am I being ridiculous? I just don't know. I look around the waiting room at clinic and I see others who look much, much sicker than I, who have had longer, harder paths and I feel guilt for getting on the internet and bitching about my bathroom nonsense and being homesick. But then I have to sprint into a smelly public bathroom and I could give a crap about anyone else's struggle. Yeah, pretty yogic right? Not so much. Not so much at all. Wallowing in self-pity is NOT on the path to enlightenment. Or happiness.

On the topic of going home, with all my soul I want to get home at the beginning of December. As that time draws nearer and those bottles on the wall grow fewer, and I look at all of the steps that must be taken, and be successful, in order for me to get home by that time, I get scared. The steroids are still being tapered, and evidently this is the dangerous time in this process in terms of GVHD flares. In addition, I need to be taken off of the IV anti-viral before my port can be removed, another HUGE sticking point for me. New dressing or not, I need this thing OUT of me. That anti-viral must be switched to an oral drug, the very same which contributed to my liver problems and hospital stay. Add that med switch to a tapering steroid and you can potentially get some suckyll being tapered, and evidently this is the dangerous time in this process in terms of GVHDsucky stuff. Please don't misunderstand me, I am NOT sitting around counting the horrible complications that could happen. I am NOT focusing on the what-ifs. It just seems as though if I address these fears, these scary things head on with out amending them with a "yeah but, COULD be dangerous. MIGHT NOT happen."- positive-thought every time, I am better prepared IF something should happen. Not negative, just realistic. That last hospital stay bitch-slapped some scary reality into me. As it stands, there is not currently any discussion of keeping me here longer. Much of what I have going on can be managed from home, by doctors in Philly, but this fear is just filling me at the moment. It is so staggering how MUCH goes into having these transplants go successfully. Staggering at the number of things that can pop up. Lynne, my APN actually said to me today "You really got the short end of the stick on this one". This didn't actually make me mad at her, because she's right and she said it with compassion, though I still had a hard time holding in the tears until she left the room.

Tears have been gushing from me more frequently lately. They just come bubbling up out of me and down my puffy cheeks. I look in the mirror and cry, I do not look like myself. My body does not look like my body. It DOES NOT feel like my body. Add to that the blood vessel that I burst, no, EXPLODED, with an ill-placed insulin injection on my abdomen last night and well, let's just say having a giant sliding mirror in my bedroom is a bit...cruel. My best friend is flying in this weekend with Phil (BRIGHT SIDE!!!!!! SHINING MOMENT!!!) and I am terrified at how she will see me. When I think about arriving home and having those of you who haven't seen me since August see me, that scares the hell out of me. I have shed tears over my biceps. My friggin' biceps. How stupid is that? But it happened, and it was real. It is shocking to me how much of my self-worth I placed in my physical state. Not that I was ever perfectly fit or sleek or...well, perfect. I just found much of my identity in my form. Now that that is gone, I have had to do some serious self-searching...and will continue to need to do so. Some priorities and standards need to be reevaluated.

This journey to health is trying, I suppose that's the understatement of the century considering all that I just rambled on about, but it's true. My family, my husband, my friends have all been impacted, for this, and I've said this before, I feel guilt. My parents have seen each other less over the last several months than Phil and I. That's not fucking OK. My siblings have to spend Thanksgiving down here, all of us away from our extended family, my husband included. The path has been hard, it will continue to be hard. It has to end sometime. It has to. Right?

I have no profound ideas about this at the moment. Not that my ideas are every worthy of being called profound. Some things just can be 'spun'. It's happening and I have to strap in or be thrown from the bike. My brain can't go there now, can't think deeply and serenely. I've reverted to the primitive rat-brain of basic wants and needs...yogic thought is escaping my addled head. Home, comfort, love. That's the prescription.

Now only if my insurance company would pay for a thirty day supply of THAT.

Well, Philly and beyond: thank you for being in my pack through this. My heart yearns for your familiar faces. Much, homesick, love.

Wednesday, November 10, 2010

Heart Healin' and The Day of WTF Just Happened

So, HEY!  Lots of stuff and things have been going on around here, I'm STILL re-writing that last post that I promised forever ago, erm.....but the goings-on of the last few days really should be blogged about rightnow.

This past Friday night, my Nan and Uncle Jeff flew down to spend the weekend with Mom and Phil and I. Let me just tell you, it was like a big, warm fuzzy hug around my soul to see them in person and to spend time laughing and talking- feeling normal. Silly things that feel normal like having a cold cut lunch together on Saturday that reminded me of all of the lunches we had as a family when I was a kid at my Nan's river house. Sitting together in the small living room here and laughing, just like we do before dinner every time we gather at home. These things just stitched my heart right up:) We also went totally touristy and visited Johnson Space Center, which was just SO fucking cool. No really, if you are ever in Houston (though the Space Center is not actually in Houston), SERIOUSLY go be a big nerd and visit NASA.  Standing next to a massive rocket that has been outside of the atmosphere that we live in, and was engeniered, built, manned and maintained by people in the buildings surrounding you is...really awe inspiring. The company was pretty awesome too:)

Sunday, Mom took my Nan and Uncle out to lunch and to Hermann park for a nice walk while I rested my aching knees and dealt with some ummmm, uncomfortable and unfortunate symptoms of something I'll explain later. We ended the weekend with dinner out at a local grill, which was also the first time I've eaten dinner out since August. While I was a touch paranoid to take off my mask, I was shocked at how good it felt to be free of it for an hour.  Nan and my Uncle departed on Monday around lunchtime but unfortunately Mom and I had to say our (tearful) goodbyes the night before because I had a full day scheduled at MDA. Which brings me to the absolute mess that was Monday. Strap in.

This adventure includes, but is not limited to: vomit,  a car accident, cirque du soliel and lots of urine. Just a heads up.

Monday morning, Mom and I set off bright and early to MDA so that I could get my new CVC dressing changed (oh mama, my comfy new CVC patch....I'm in love) and so Mom could see how to change it. Afterward the plan was for me to get my labs drawn, Mom to go run errands while I napped in ATC and then I would head over to the hospital to visit a friend and Mom would come pick me up around dinner time. We had a schedule! A Plan! And the universe laughed...Well, most of that happened. It was all the other shit in between we could have done without. Allow me to weave you a tale of massive WTFness.

Now, I've mentioned before that weird things happen post-transplant, especially with viruses and their tendency to reactivate themselves. This story is about one of those such (possible- the culture isn't back yet) viruses that something like, 90% of us are running around with unnoticed but never have problems with unless your immune system becomes weakened. The virus in question (and I don't know what it's called, gotta ask for that one) shows up when you're a kid as a cough, sometimes no symptom at all, and then lays dormant in you until it's given the opportunity to raise some hell, in which case it pops up in your urinary tract to have some fun. I've also mentioned that this is a cancer blog, so far warning that there's gonna be some TMI in the following paragraphs, don't say I didn't warn you. Mmkay.

Here's what's up: Ladies, you know what a UTI feels like when it's starting to rear it's ugly head? Yeah, thought so. Imagine that, but not that at all, instead a really weird intense tingleburn that lingers after you've...uh...finished but yeah kinda also like a UTI...ahhhhh I can't figure out how to adequately explain it. Let's go with: it's weird and uncomfortable and a little painful. In addition, my bladder has decided to set itself to  "FUCK YOU LAURA" and make me have to RUN to pee LIKERIGHTNOW every ten to thirty minutes. This nonsense started over the weekend, and after an hour long game of phone tag with the BMT doctor on-call on Saturday morning, we were told assured this was likely the result of this virus that has been reactivated ("it's about that time post transplant" is what the doctor said. thanks for the warning), not a UTI,  On-call doc gave us the go ahead to wait until Monday unless blood or fever popped up, in which case I was to go to the ER and told me to "push fluids and take pain meds". So that's what  did. By Monday, I was well hydrated, woozy and still peeing like a racehorse every ten minutes (also Phil flew back to Philly on Sunday night so I was husbandless).

So, back to Monday! We (Mom and I) get my CVC changed and collected the prescription for the new dressing (and I was told by the IV nurse that she thought I was 14 and that's why she only spoke to my Mom the whole time she was scraping around on my chest...apparently my wedding rings didn't tip her off) and head over to the other side of the floor to the Lab. At this point, I was starting to feel the effects of the pain medication I took in addition to my morning meds and was beginning to regret not having eating much more than grainy bread and a shmear of Nutella before stumbling out into the world that morning. Usually, these kinds of drugs don't effect me in the dizzy-wobbly-slur your words-upset tummy kind of way so I was beginning to get scared about how I was feeling. Once I had my blood drawn (Monday draws are rather large-10 or so vials for blood cultures) I walked into the lobby where Mom was waiting and chatting with a very nice looking woman who was asking Mom about my scarf. This is kind of how this interaction went: Lady: "Hi! How do you tie your scarf like that" Me: "Uhhhrrggggg I am about to vomit" ::runs off down the hallway, furiously working NOT to yam on the floor, and into a staff bathroom. Thank goodness my thigh strength is coming back because I crouched there WAITING to puke for a good 10 minutes. Waiting, waiting, waiting....uhm, hold up. I don't need to puke any more. So I didn't. I got up (still woozy), scrubbed the hell out of my hands which had been grasping the toilet for dear life, and went back out to find Mom. Seriously, WTF was that?

Mom was concerned about leaving me until I had a bed in ATC, and was also concerned that I hadn't eaten enough, so she walked me up to wait in the ATC clinic lobby, left me in the gentle hands of Mrs. Patel, the mother of another patient-friend while Mom grabbed me lunch from the cafeteria. The nausea went away during the hour and a half wait for a bed, but I still felt woozy, not quite right. Well, turns out my blood pressure (which they take before processing me for a bed) was CRAZY high. Like, 158/110 high. The nurse took it four times on three different machines and ALL three machines read it high. All I can do is shrug. The took my pressure later that afternoon and it was 120/80. Could the wooziness have been from that? Why did my pressure go so high? ::shrug:: Who knows.

Long story short (because there's more interesting stuff to write about and I keep falling asleep while typing this- gotta stop writing at night...): I get my bed in ATC, Mom leaves to go run errands, I get hooked up to my IVs, inhale lunch and shut out the lights for a nap. About an hour into my go in ATC, I get this text message from Mom: "not going to the grocery. was rear ended by some jerk. i'm ok just have to deal with insurance and rental". OMFG! So, here's my Mom, just going about her day, taking care of me and being so many hundreds of miles away from her husband, had to deal with a scary car accident in a strange city and friggin painful whiplash.  She's ok, thank god, just shaken up with a very sore neck and back, but she doesn't need that crap. The other drivers, there were two cars hit (Mom at the redlight in front, car sandwiched between her and the car that caused the accident), were also in crazy situations. The man who caused the accident has a wife being treated at one of the other hospitals in the Medical Center, the woman who ended up sandwiched between my mom and the other car was six months pregnant, and well, you know about my momma. Everything turned out just fine, the car was not too damaged and the offending driver's insurance is going to take care of everything. Oh my my my. THough I offered (almost insisted) to take a cab back from the Hospital so Mom could rest, she came up later that evening to get me anyway. Thanks Mom:) I'm so glad you are ok!

After finishing up in the clinic and putting in for refills on a few prescriptions (two of them to help with my bladdery nonsense) I visited with a friend who is going through treatment (nay, ALMOST DONE her treatment! Yay Sarah!) inpatient. Sarah is extremely kick ass and it's always fun to hang out with her, it's just a huge bummer that she was hooked up to some gnarly chemicals this time (in a pimp room no less!). Sarah had another friend visiting as well so the three of us spent the late afternoon just hanging out. When it was time to say my goodbyes so Sarah could get some rest and I could pick up my prescriptions,  I ran into Elsa, the Y Service coordinator. Elso proceeds to tell me that she was going to call Sarah and I tthat night anyway and is so glad to run into me because......SHE HAS TICKETS FOR US TO GO SEE CIRQUE DU SOLIEL  ON SUNDAY AFTERNOON FOR EACH OF US AND TWO GUESTS! Friggin score! The awesome part about this? My best friend in the entire world is flying down to visit this weekend on the same flight as the hubs and will be able to come! The bummer about this is that Mom can't come because she's flying up to St. Louis that day to visit her sister, my Aunt Chris :( (that's a sad face for Mom not being able to come, not for seeing Aunt Chris:) ). So thank you Volunteer Services at MD Anderson, you guys seriously rock!

When Mom and I finally made it back home, the rest of the evening was pretty uneventful. Mom and I slapped together whatever was in the apartment to eat because frankly, neither felt like cooking and Mom wasn't too down with driving all the way over to the grocery. MMM soft pretzel and steamed vegetable The advantage to being a walking science experiment is that, when something happens to your caretaker, you have an arsenal of goodies to help fix them up. I got Mom all propped up and iced and then I busted out my nifty remote controlled heating pad for her to de-car accident on. It was kind of nice to play nurse to someone else, especially Mom, even in just a little way, pay it forward. By yesterday morning, Mom said she felt much better:)

Now, and I feel as though this deserves another fair warning: Cancer blog= TMI. I posted my rashy side boob on here last month, so why not share this little gem as well. One of the two drugs that my doctor put me on to help with the urinary tract symptoms from this wacky virus, has the effect of numbing you up so that you can't feel any pain or discomfort when "going". The other drug is that "Gotta go" song drug that tames the bladder freakout, but this takes a few days to kick in (in the meantime I just sing the song in my head everytime I go scampering in to the restroom). Here's the problem. I have to take sleeping pills to get adiquate sleep. My bladder doesn't understand this because he dropped out of internal organ high school or something. It also doesn't care that I can't feel it being a bastard in my sleep because I am numbed and tranquilized. Well, that is until I wake up and find that....drum roll please!!!......I peed in my fucking bed. IN MY FUCKING BED. Even better? The numbing drug dyes pee bright orange. BRIGHT FUCKING ORANGE PEE IN BED. WHAT. THE. FUCK. Here I am, it's 3 in the morning, I feel like a toddler, don't want to wake up my poor mother for help, so I rip all of the bedclothes off, clean my gross self off, scrounge around in the linen closet for any kind of sheet for my bed- all the while totally wacked out on Ambien.  You want to hear what's really fucked up ? About an hour later, it nearly happened again! But this time...this time you little bastard bladder, I was prepared and managed to not revert back to childhood (for the record, and you can ask my mother, I was NOT a bed wetter. pinkie swear) and can not say that I wet my bed twice. So there. Jeebus.

Why in the HELL, you may ask, would you just admit to wetting the bed at 25 years old on the internet for all to see? Well, because it fucking happened. And it has probably happened to another patient, and WILL happen to someone else. It may even happen again to me. It happens and there is no fancy philosophy to be seen here other than, sometimes you wet your bed and have to deal with it. There ya go. As mad as I was about it at 3 am, by noon it was pretty freaking hilarious. Nay, really freaking hilarious. If you can't laugh about it (and sometimes there isn't much to laugh about), you might as well hang it up and go home. Besides, the real joke is on my unruly bladder....I spotted a box of Depends buried in the back of the cupboard in my bathroom. Do I dare? (fuck no. that would scar me for life)

Today, Mom and I just basically sat around (she did head up to the store to buy about a billion pounds of fresh veggies- and chocolate chip cookies!!) and tried really hard not to have anything interesting happen. When I say sat, I mean, sit for twenty minutes, race to pee, curse under my breath, and then return to sitting until the next round comes along (it's good exercise or something- which is good because it's impossible to practice yoga with a constantly spazzing bladder). Monday was enough, thank you very much, no need to be fancy today. Also, Mom says that her neck and back are feeling better, she looked more comfortable this afternoon:)Tomorrow, much of the same with a wig trim thrown in if the 'ole bladder signs my permission slip. He was being kind of an ass earlier so I don't know it he'll say it's alright. Jerk.

So yeah, haven't been fantastic about updating lately. There are good reasons for that which I will get into in another post, but for now, I will leave you with a picture of my new best friend: pink, squishy, SMALLER, CVC dressing (ahhh the little things, no?). I can't even explain how much this little guy has improved my quality of life since he came to live with me. I lub him:)

Much Love to you, dear friends. Many thanks and so much gratitude for your support through all of this. You are blessings in spades and I and my family owe you a debt of great gratitude for the walls of comfort you have built around us. Today, Wednesday, November 10th, is day 75. Almost home. Almost back where we belong:) Love you all...

Much love:)

Thursday, November 4, 2010

Mah brain isn't working so good....

There is a very significant post in the works (promises, promises....I know). My residual chemo/pick a drug, any drug-brain has been a real wet blanket on this blogging thing. Sorry for the silence, it's taking a little longer to get these cogs movin'. There is quite a bit to share, thank you for being patient, dear, dear friends. Missing all of you so much.

Much love:)