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 (besides....well....you'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 parts...to 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.
MUCH LOVE!
Wednesday, November 17, 2010
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.
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 peeing..so 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 dinner...so...weird:). 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:)
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 peeing..so 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 dinner...so...weird:). 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:)
Much love:)
Wednesday, October 27, 2010
As the (facial) tides turn
Uh...hey. Yeah... it's been awhile.
Sorry 'bout that.
I've wanted to write, had whole posts halfway written in my head, started to type some of them...but then just ended up messing with my blog design in an attempt to make the type larger so I could read it and was forced by blogger to update to the new design platform (you like it? hope so...apparently it can't be changed back!). Um, or I got distracted. Or bored with my own words. Or fell asleep. The thing is? There isn't much going on 'round here that is too terribly interesting, or at least not to anyone other than well...no. There isn't too much interesting going on (medically speaking, I guess). That's a good thing. A really good thing.
A rundown of the medically mundane? Alrighty. I'll understand if you yawn into your keyboard or go back to stalking your second grade crush on Facebook.
My body has developed it's own tidal pattern. No, really. I'm pretty sure it's even in sync with the moon. Remember this gorgeous site the other night?
That beautiful October full moon? Yeah, so does my face. The steroids have had a delayed effect on me giving me that well known 'moon face'(remember when I post that I didn't have moon-face? yeah. me too). My face, well, everything from my waist up, swells at random parts of the day. You can actually watch the tide "come in" and "go out". Ask my sister, it happened twice with my face while we were Skyping the other day and it really freaked her out. Like I said, it's not my face that swells, though my face is pretty much always moon-y now, it moves around. Sneaky bastard. Sometimes it's in a ring around my neck. Sometimes it's the backs of my arms (THAT looks really weird). Sometimes it's my tummy. Sometimes I go up a full cup size in a half hour (you would think that would bee cooler than it really is). On really awesome occasions all of it puffs at once, which is pretty much how I was during the fullest of the full moon. As uncomfortable as it is, there is something sort of interesting about it. Like I'm in sync with the flow of the sun and moon in a really freakish way. Connected with the earth or something...
In an attempt to quell the swelling, which, yes, does hurt, I attempted an experiment involving a bandanna, a frozen eye mask and my face. It failed. Photographic evidence:
(Disclaimer: the decision to tie a frozen eye mask to my face with a bandanna was made under the influence of heavy sleeping and anti-anxiety medication. Yes, I was high. Yes, I took pictures. Yes, you should laugh at me.)
Yeah. Hey, look! You can even see the weird swelling obscuring my clavicle in the the picture on the right. Cool.
Another cool place the swelling is going? In a LUMP on the back of my neck. This super-cute bullshit is lovingly referred to as a 'camel's hump'. Not joking. It's the new thang. Sometimes I have several baby 'camel humps' on the back of my neck. Sexaaaaay
On Monday I had a very puffy conversation with Jim, my PharmD (because Dr. De Lima was being really annoying, no really, he was being annoying. Those eyebrows are just NOT always charming. And was all rushy-busy about it too) about what can help the Tides of Laura until they recede on their own. He offered an adjusted (and terribly boring) fluid plan. Lasix are out of the question for a variety of boring reasons, so there ya go. It's kinda working but it's only been two days. Give it time, I say!
While at first, this puffy-moony thing bugged me quite a bit cosmetically, I've resigned to remembering that (and am relieved to know) it will go away within a few weeks of stopping the steroids completely. Meaning that I will look more like me by Christmas. Hey, I'm cool with that. It is ouchy when it gets bad (and I'm starting to realize this whole discussion is kind of gross. You know, me talking about my fluid retention issues...sorry:/), but then the tides change and it gets better. How's that for a fucking metaphor? Isn't that just it, though? It gets bad, it hurts and then it goes away. Then maybe 'it' comes back, but the waters have to recede again at some point. Even when the waters make you look like this:
Hot. My sister's reaction? "Laura! Lay off the cupcakes!" Yeah, no. You should see the rest of me. When not full of fluid I'm all scrawny. Dear Kris Carr: THIS IS NOT CRAZY SEXY CANCER (obscure book/documentary reference).
In other news, Phil is back in Philly until Monday working, spending time with family and trying to keep our cats from going completely feral (don't worry, they are WELL taken care of. THANK YOU Peggy and Laurie and Paul and Maggie and everyone else who has been hangin' with them!). Mom is back down here with me after a restful two weeks home and Dad is flying tomorrow night to celebrate his birthday:) Me? Besides trying to manage the puff and being genetically male (still gross), I've been going to yoga classes at MDA, doing pilates on my bedroom floor (dude, that shit is hard!) and reading. Reading everything. Readingreadingreading. Tomorrow I'm going to post a crap-load of links to articles and blogs and books that I think are supercool. Because you care:)
Also, and this is probably the most important part of this post, there is a huge wave of gratitude and thanks from Phil and I to a whole lot of people . To PenTech Health and to my friends and colleagues at Haverford and to two dear friends C and K and a slew of other friends and family: Thank you. Thank you for your support and generosity and love and cards and emails and texts and Facebook posts and hours on Skype. For everything. You lift us up and make this whole thing so much softer. From my heart to yours. Gratitude. Forever gratitude.
Much love y'all. Only 38 more days!!! (38 bottles of HARD CIDER! yUmmmm!)
Sorry 'bout that.
I've wanted to write, had whole posts halfway written in my head, started to type some of them...but then just ended up messing with my blog design in an attempt to make the type larger so I could read it and was forced by blogger to update to the new design platform (you like it? hope so...apparently it can't be changed back!). Um, or I got distracted. Or bored with my own words. Or fell asleep. The thing is? There isn't much going on 'round here that is too terribly interesting, or at least not to anyone other than well...no. There isn't too much interesting going on (medically speaking, I guess). That's a good thing. A really good thing.
A rundown of the medically mundane? Alrighty. I'll understand if you yawn into your keyboard or go back to stalking your second grade crush on Facebook.
- My steroid dose has been reduced dramatically (by a bit more than half since the last time I wrote about being a 'roid monster). I am no longer a super diabetic, though still require a little insulin, and am not eating everything in sight. Thank god. That was really uncomfortable and I was going through an unnatural amount of Halloween candy. Oh and I am not literally tranquilizing myself at night in order to sleep. Tranquilizing. Not joking.
- The 'ole liver is functioning like it's supposed to. Good liver. Keep it up champ.
- Some goofy stuff showed up on my labs on Monday, which obviously prompted the million-question-game (or how-much-can-Laura-annoy-her-medical-team-before-they-run-away game). Apparently, and they can tell this from a combination of goofy chemistry levels in my blood, my blood type is getting ready to change. Now THAT is fucking cool.
- My blood is genetically male (have I posted that before? errr). Gross.
- Last week after a reduction in my steroid dose, Phil and I got all paranoid because I started to get a wee bit itchy and a wee bit red. The GVHD warning lights went off and I spent most of the week slathering myself in goop and praying to Jesus/Buddha/Krishna/Flying Spaghetti Monster that the fucking tortuous GVHD rash wasn't returning. It didn't. Whew (no really WHEW).
- My hands shake constantly now from one of the drugs I'm on, it's only annoying when it causes me to dump half a bottle of black nail polish on the carpet.
- That darn neuropathy hasn't gone away, but it seems to improved the more I am able to work out (you were right Jeannie!), which is pretty cool. having the strength to actually work out is pretty cool too:)
- The hair on my head is starting to grow again! There's a five o'clock shadow starting up there, but in this really funny, uneven way. It's too fine still to take a picture of but, if you could see it, you would laugh and want to stroke it (mmmmm STROKE MY FUZZZZ!
My body has developed it's own tidal pattern. No, really. I'm pretty sure it's even in sync with the moon. Remember this gorgeous site the other night?
 |
| Phil and I took a walk around the apartment complex on the night of the full moon because it was a GORGEOUS COOL 70 DEGREES:) |
That beautiful October full moon? Yeah, so does my face. The steroids have had a delayed effect on me giving me that well known 'moon face'(remember when I post that I didn't have moon-face? yeah. me too). My face, well, everything from my waist up, swells at random parts of the day. You can actually watch the tide "come in" and "go out". Ask my sister, it happened twice with my face while we were Skyping the other day and it really freaked her out. Like I said, it's not my face that swells, though my face is pretty much always moon-y now, it moves around. Sneaky bastard. Sometimes it's in a ring around my neck. Sometimes it's the backs of my arms (THAT looks really weird). Sometimes it's my tummy. Sometimes I go up a full cup size in a half hour (you would think that would bee cooler than it really is). On really awesome occasions all of it puffs at once, which is pretty much how I was during the fullest of the full moon. As uncomfortable as it is, there is something sort of interesting about it. Like I'm in sync with the flow of the sun and moon in a really freakish way. Connected with the earth or something...
In an attempt to quell the swelling, which, yes, does hurt, I attempted an experiment involving a bandanna, a frozen eye mask and my face. It failed. Photographic evidence:
(Disclaimer: the decision to tie a frozen eye mask to my face with a bandanna was made under the influence of heavy sleeping and anti-anxiety medication. Yes, I was high. Yes, I took pictures. Yes, you should laugh at me.)
Yeah. Hey, look! You can even see the weird swelling obscuring my clavicle in the the picture on the right. Cool.
Another cool place the swelling is going? In a LUMP on the back of my neck. This super-cute bullshit is lovingly referred to as a 'camel's hump'. Not joking. It's the new thang. Sometimes I have several baby 'camel humps' on the back of my neck. Sexaaaaay
On Monday I had a very puffy conversation with Jim, my PharmD (because Dr. De Lima was being really annoying, no really, he was being annoying. Those eyebrows are just NOT always charming. And was all rushy-busy about it too) about what can help the Tides of Laura until they recede on their own. He offered an adjusted (and terribly boring) fluid plan. Lasix are out of the question for a variety of boring reasons, so there ya go. It's kinda working but it's only been two days. Give it time, I say!
While at first, this puffy-moony thing bugged me quite a bit cosmetically, I've resigned to remembering that (and am relieved to know) it will go away within a few weeks of stopping the steroids completely. Meaning that I will look more like me by Christmas. Hey, I'm cool with that. It is ouchy when it gets bad (and I'm starting to realize this whole discussion is kind of gross. You know, me talking about my fluid retention issues...sorry:/), but then the tides change and it gets better. How's that for a fucking metaphor? Isn't that just it, though? It gets bad, it hurts and then it goes away. Then maybe 'it' comes back, but the waters have to recede again at some point. Even when the waters make you look like this:
In other news, Phil is back in Philly until Monday working, spending time with family and trying to keep our cats from going completely feral (don't worry, they are WELL taken care of. THANK YOU Peggy and Laurie and Paul and Maggie and everyone else who has been hangin' with them!). Mom is back down here with me after a restful two weeks home and Dad is flying tomorrow night to celebrate his birthday:) Me? Besides trying to manage the puff and being genetically male (still gross), I've been going to yoga classes at MDA, doing pilates on my bedroom floor (dude, that shit is hard!) and reading. Reading everything. Readingreadingreading. Tomorrow I'm going to post a crap-load of links to articles and blogs and books that I think are supercool. Because you care:)
Also, and this is probably the most important part of this post, there is a huge wave of gratitude and thanks from Phil and I to a whole lot of people . To PenTech Health and to my friends and colleagues at Haverford and to two dear friends C and K and a slew of other friends and family: Thank you. Thank you for your support and generosity and love and cards and emails and texts and Facebook posts and hours on Skype. For everything. You lift us up and make this whole thing so much softer. From my heart to yours. Gratitude. Forever gratitude.
Much love y'all. Only 38 more days!!! (38 bottles of HARD CIDER! yUmmmm!)
Monday, October 18, 2010
A touching thing happened on the way to the donut shop
Yesterday morning, a simple run to the local (famed) donut place, brought with it a gift of hope and kinship and gratitude.
Whenever we go out in public, I strap on my mask. That darn thing elicits some of the most interesting responses from people who see it. Many people don't notice, either they are used to it around here or don't care. Some people do a double take (it's cool, I would too before all this). Some people lose their minds, freeze, and stare wide eyed and some have been known to actively get away from me, and in an (ahem) less than subtle way (BOOOGIE BOOOOGIE!). Once, there were a pair of very 'gussied up' young women who walked veeeeery slowly around a display of stationary I was looking at, eyes glued to me and whispering to each other. Nice. Kids, for obvious reasons, usually do the freezing and staring while loudly asking their parents questions. One of the best Mom answers was "it helps her breathe, sweetie". Good one:). The mask is a weird thing, I'll admit. The thing that people who freak out are probably thinking? Something along the lines of: "What does she have that she's trying to keep from giving to ME?!". Swine-flu-media-panic-hangover talk, I understand. In fact, I understand all of the reactions, but sometimes I just wish that someone would ask about it. Well, yesterday morning, that wish was granted in a very special way.
P and I stumbled into the donut place (Shipley's, if you're interested), which was as appropriately busy as a donut shop should be on a Sunday morning in the South (read: not. everyone else was in church). There were only two people sitting at the tables around the edge of the store, a young Mom and her daughter, who was maybe 5 years old. My ears caught, just for a split second, the little girl start to say something to her mom like: "Mom she looks like...." and then her arm raised to point in my direction. I just turned my body slightly and let it go, she's a kid after all. Anyway: MMMMM DONUTS. Well, just as P and I were paying for our treats, I feel a light tap on my arm and turn to see the Mom and daughter standing next to us, looking, well, emotional. Mom says this:
"Excuse me, are you going through cancer treatment?" My breath caught, "Yes". When I turned to face her completely she was CLEARLY very emotional about this exchange, sort of nervous but really really wanted to talk to me. Then, she says this: "My daughter, this is my daughter (motions to the little girl who is now twirling- not kidding -twirling in circles next to us) saw you when you came in and said 'Mom she looks like you did last year!". GULP. The woman goes on to say: "I went through treatment last year, I finished my last surgery almost a year ago and I remember wearing the mask everywhere. Can I ask what kind of cancer you are being treated for?" I answered: "Well, I had leukemia but then two months ago I had a bone marrow transplant". She says: "Wow, well, you look great. Hey, your hair will come back. Mine came back really curly, it was never curly before. Look! I have to pile mine on my head in this crazy Edwardian hairdo now!(It wasn't crazy, it was actually very pretty, well, SHE was very pretty.) Good luck with everything, really you'll be just fine". Then, as she turned to leave, I barely got out: "Thank you!!! You too! You look great! before she booked it out the door.
So, through the universe, to that woman:
Thank you, woman and daughter. Thank you for reaching out. Thank you for being the kind of courageous person that does. That is just so, so special and it was blessing to experience your courage. I can't imagine what it felt like for you to come up to me, it looked like you were pretty emotional about it. I can't imagine what you went through in your treatment, what your daughter felt going through whatever it was with you. If you have a significant other, I can't imagine what it was like for them. I can't imagine how horrible it is that your daughter has those images of her mom going through treatment. I'm sorry that I didn't have the presence of mind to ask you what your diagnosis was. What was it? You really did look amazing and healthy. Something tells me that you are one hell of a fighter. Thank you also for making me step outside of the Laura-bubble for a moment and making me see that others reaction to my appearance is very personal to them, I can never know what someone else has been through that they are seeing reflected in me. It's not about me. Please, universe, send that woman and her daughter and their family love and blessings and gratitude from my heart. Her gesture meant so much more than she'll ever know.
Much love.
Whenever we go out in public, I strap on my mask. That darn thing elicits some of the most interesting responses from people who see it. Many people don't notice, either they are used to it around here or don't care. Some people do a double take (it's cool, I would too before all this). Some people lose their minds, freeze, and stare wide eyed and some have been known to actively get away from me, and in an (ahem) less than subtle way (BOOOGIE BOOOOGIE!). Once, there were a pair of very 'gussied up' young women who walked veeeeery slowly around a display of stationary I was looking at, eyes glued to me and whispering to each other. Nice. Kids, for obvious reasons, usually do the freezing and staring while loudly asking their parents questions. One of the best Mom answers was "it helps her breathe, sweetie". Good one:). The mask is a weird thing, I'll admit. The thing that people who freak out are probably thinking? Something along the lines of: "What does she have that she's trying to keep from giving to ME?!". Swine-flu-media-panic-hangover talk, I understand. In fact, I understand all of the reactions, but sometimes I just wish that someone would ask about it. Well, yesterday morning, that wish was granted in a very special way.
P and I stumbled into the donut place (Shipley's, if you're interested), which was as appropriately busy as a donut shop should be on a Sunday morning in the South (read: not. everyone else was in church). There were only two people sitting at the tables around the edge of the store, a young Mom and her daughter, who was maybe 5 years old. My ears caught, just for a split second, the little girl start to say something to her mom like: "Mom she looks like...." and then her arm raised to point in my direction. I just turned my body slightly and let it go, she's a kid after all. Anyway: MMMMM DONUTS. Well, just as P and I were paying for our treats, I feel a light tap on my arm and turn to see the Mom and daughter standing next to us, looking, well, emotional. Mom says this:
"Excuse me, are you going through cancer treatment?" My breath caught, "Yes". When I turned to face her completely she was CLEARLY very emotional about this exchange, sort of nervous but really really wanted to talk to me. Then, she says this: "My daughter, this is my daughter (motions to the little girl who is now twirling- not kidding -twirling in circles next to us) saw you when you came in and said 'Mom she looks like you did last year!". GULP. The woman goes on to say: "I went through treatment last year, I finished my last surgery almost a year ago and I remember wearing the mask everywhere. Can I ask what kind of cancer you are being treated for?" I answered: "Well, I had leukemia but then two months ago I had a bone marrow transplant". She says: "Wow, well, you look great. Hey, your hair will come back. Mine came back really curly, it was never curly before. Look! I have to pile mine on my head in this crazy Edwardian hairdo now!(It wasn't crazy, it was actually very pretty, well, SHE was very pretty.) Good luck with everything, really you'll be just fine". Then, as she turned to leave, I barely got out: "Thank you!!! You too! You look great! before she booked it out the door.
So, through the universe, to that woman:
Thank you, woman and daughter. Thank you for reaching out. Thank you for being the kind of courageous person that does. That is just so, so special and it was blessing to experience your courage. I can't imagine what it felt like for you to come up to me, it looked like you were pretty emotional about it. I can't imagine what you went through in your treatment, what your daughter felt going through whatever it was with you. If you have a significant other, I can't imagine what it was like for them. I can't imagine how horrible it is that your daughter has those images of her mom going through treatment. I'm sorry that I didn't have the presence of mind to ask you what your diagnosis was. What was it? You really did look amazing and healthy. Something tells me that you are one hell of a fighter. Thank you also for making me step outside of the Laura-bubble for a moment and making me see that others reaction to my appearance is very personal to them, I can never know what someone else has been through that they are seeing reflected in me. It's not about me. Please, universe, send that woman and her daughter and their family love and blessings and gratitude from my heart. Her gesture meant so much more than she'll ever know.
Much love.
Saturday, October 16, 2010
50 Days
50 bottles of beer on the wall. 50 glasses of champagne (maybe we'll save the champagne for day 100:)).
It's been 50 days. Halfway to the big milestone. Halfway home. Nearly two months since a stranger saved my life. Amazing.
Phil and I spent a GORGEOUSLY NORMAL day together. Slept late. Went to the gym. Did laundry and cleaned. Napped. Watched the Phillies. It was boring and perfect. Boring is the best kind of day around here. The most excitement today saw was the big bunch of balloons (one is shaped like a giant champagne bottle) Phil lovingly surprised me with (balloons turn me into a giddy five year old, they are just so effing joyful) and the splash of makeup and pink wig I wore to dinner.
We ended the day with a quiet, candlelit dinner where we talked about what our lives will be like in 50 years. 50 years. Our children. Grandchildren. Home. Where we've been by then. Who we'll be. We should do this more often.
50 days. My. God.
Much love:)
It's been 50 days. Halfway to the big milestone. Halfway home. Nearly two months since a stranger saved my life. Amazing.
Phil and I spent a GORGEOUSLY NORMAL day together. Slept late. Went to the gym. Did laundry and cleaned. Napped. Watched the Phillies. It was boring and perfect. Boring is the best kind of day around here. The most excitement today saw was the big bunch of balloons (one is shaped like a giant champagne bottle) Phil lovingly surprised me with (balloons turn me into a giddy five year old, they are just so effing joyful) and the splash of makeup and pink wig I wore to dinner.
We ended the day with a quiet, candlelit dinner where we talked about what our lives will be like in 50 years. 50 years. Our children. Grandchildren. Home. Where we've been by then. Who we'll be. We should do this more often.
50 days. My. God.
Much love:)
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