Friday, December 24, 2010

D-Day

I have a story to tell.

A story that, for whatever reason, I've not told on this blog before. Strange, this, because without this story, there is no blog. My diagnosis story. Pull up a snuggie and make sure your tea is warm, this is a long one.

Have you ever heard the story about the frog in the pot? It goes something like this: a frog, when placed in a pot with cool water which is then gradually warmed until boiling, will remain in the pot until it dies because it does not notice that the temperature is increasing.  A frog which is dropped into a pot of boiling water will fight to escape the sure death of boiling. When things happen slowly, over months or years, it is difficult to notice the change. I suppose that's why they say that hindsight is 20/20, eh?

The story of how I was diagnosed with CML is quite like the story of the first frog. That's the scary part about chronic leukemias, they move slowly, warm slowly, and then by the time you realize that something is wrong, you're in a pot of boiling water, or chemo as it were. The question "how did you know you were sick?" is one that I get often and one that is always interesting to answer. I can answer this question honestly, or I can answer it with the 20/20 version, a bit more palatable for most. The honest version is: I thought I was allergic to blueberries (pause for head cock and quizzical look) and then I must launch into an explanation of how I got from blueberries to bone marrow transplant. The 20/20 version is: I was tired all the time and kept getting infections (ah, that's more like it) and then the transition is much more...common.

Lets go with the real version, shall we?

Two years ago, during the fall of 2008, I was in the first few months of my first year of teaching, P and I had just moved into a new apartment in the suburbs, we were planning our wedding and I was immersing myself in as much yoga as I could handle. Earlier that spring, I developed a strange rash across my eyebrows that looked a little something like a rashy zorro mask. The rash showed up after I used a fancy 'fresh' blueberry face mask from Lush. I popped a benedryl, returned the face mask, and went on my way. Over the next several months, the rash came and went, always on my face, disappearing as swiftly as it appeared. This happened so infrequently that I was always surprised when it showed up, so infrequently that I could never quite pinpoint what was causing it. That is until one day late that November when the rash cropped up, worse than ever before, after enjoying a blueberry smoothie for lunch at work. I remember vividly sitting at the piano in my classroom, with a room full of first graders, terrified that my throat was going to close before I finished teaching "Pavo, Pavo, Turkey Game". Once the wee ones were safely out of the room, I hauled ass down to the nurse and requested a benedryl (me: "Sue, I think I'm having an allergic reaction." Sue: "I'll say!"). That afternoon, I finally called an allergist and set up an appointment (P had been nudging me for months to do this....).

Due to insurance company nonsense (what the hell else is new there, eh?), I had to visit my GP first before going to the allergist. That appointment went something like this: physician's assistant (who would eventually almost kill me): "What's going on?", me: "I break out in a rash every time I eat blueberries", physician's assistant (who would eventually almost kill me):"OK, here is your prescription for the allergist.". Done. Never examined me, no blood test, nothing. Just sayin' (that may be the hindsight talking).

A few days later, at allergist appointment, going over my symptoms etc. etc. she was BAFFLED. No lie. I was informed that allergies to blueberries are quite rare, that it was strange that I didn't have the itchy rash in my mouth and other tummy nastiness that evidently goes with a berry allergy, it must be something else. She performed one of those prick tests anyway (with the trillions of allergens dropped onto pinpricks on my arm) to see what I would react to, blueberries (and strawberries and raspberries included). Obviously I was NOT allergic to anything (except tobacco...). SOOOOO, a blood test was ordered. She suspected that maybe something autoimmune was going on.

It's funny, well, maybe not really funny, how vividly we remember things, innocuous things, that lead up to huge moments in our lives. Moments that under any other circumstance would slip by and disappear, never scratching the surface, just happening. The song on the radio in your car just before you get the call that you were hired for that dream job. The color sweater your future husband was wearing the first time you laid eyes on them. We all remember exactly what we were doing on 9/11, maybe what you ate for breakfast just before turning on the TV to see that the world had changed. I remember having that blood test done, remember going with my mother and that we ran into an old friend in the lobby on the way out. Remember being so tired that I could hardly stand while they chatted. It was a Wednesday. I remember having been so tired that week, so THIRSTY that week, that I taught holiday songs to my students sitting down. Out of breath, gulping down water, gasping for air at the end of '12 Days of Christmas'.  I remember the last yoga class I went to before I was diagnosed. It was a Thursday, the night after my blood test. Daniel taught it because Justicia was away. Remember the cold, remember coming home and sitting at our kitchen table, white as a ghost and looking at Phil, feeling that something was wrong. We both knew something was wrong, but what? P wanted to take me to the emergency room. I said no. I'm just overtired. I'll eat something and be fine. We did not go to the emergency room.

I remember the next Monday, December 22nd. Sitting in the exam room at the allergist to have my blood test reviewed. I remember the light- it was fading, that early darkness of winter. My sister was waiting in the parking lot. It may sound strange but I felt that something was coming. Something big. A feeling of dark foreboding. It is difficult to share that part of this story, how could anyone believe that? But it's true. The allergist came in with my chart, opened it up to those lab results, and lost her fucking mind. THIS I remember. Apparently she had not bothered to review the results before coming into the room and lost her ever loving mind when she began reading my results. She kept repeating "Why are these so high?! I've never seen numbers this high?!". What was I doing? Sitting there. Staring in horror at her, hoping that she would stop flipping out and look at me and speak some answers. Instead, she lept up, jittery, fearful, asked who my GP was and excused herself from the room. I remember sitting there stunned. The only thing I could think to do was to text my sister and P. That text said something like "My results are abnormal. I'm scared". And I was. I could hear the allergist on the other side of the door on the phone with my GP, reading the results, repeating "I know, they're so high. You need to see her tomorrow". She finally pulled herself together and came back into the room and showed me what she was flipping out over. She pointed to my white blood cell count, which was 153. She said that was high. She explained nothing else, instead she began asking the sort of questions that would scare the bananas out of anyone, let alone someone who just watched their doctor lose their shit. "Have you had weight loss without trying?" yes, 13 lbs., but I go to yoga five days a week! "Tired?" yes, but I'm a first year teacher! "Frequent infections?" yes, but I work in an elementary school..."Are you having night sweats?" yes...."Unexplained bruises?" yes.....fuck. I knew. Somehow, deep down, I knew once she got to those last few questions. She informed me that my GP would be calling me and wanted to see me ASAP, meaning the next morning. She stressed that I NEEDED to see my GP the next day. It was imperative. Shaking, terrified, I left and climbed into the car with my sister (I think I actually made a follow up appointment...whoops, never kept that one).

Driving back to my apartment that night, panicking, crying, I called my Dad. Told him what happened, "Dad, she said my white cell count is elevated", Dad: "Well, that could mean an infection, what was it?", me: "153?" (I didn't know that normal is 4-12), Dad: "That's...high." Then he quickly got off the phone (he was at Longwood Gardens with my Mom and Nan). Now I know that he knew right away, Mom says that he became very quiet. He called me back and asked all of the same questions the allergist had asked. He was calm. He asked when my appointment was for the next day and I said I didn't know, they were going to call me in the morning and get me in. He told me he was going to take me, but not to worry, get a good night's sleep.

P and I have a friend. A friend that is our age. A friend who is a survivor of Hodgkin's Lymphoma. hearing those questions and remembering how this friend was diagnosed, we both knew. Those questions. It was all there. P and I sat in the kitchen that night, avoiding the laptop, trying to convince ourselves that it couldn't be cancer. Just couldn't be. Lupus maybe. A fluke at the lab. An infection. Something. Not cancer.

Neither of us slept that night.

The morning of December 23rd, 2008 started with a chorus rehearsal. You see, that was the last day of school before winter break and, as was tradition at the time, the whole school was gathering that afternoon to sing songs for all of the winter holidays. The chorus was to perform, my first time directing a chorus in a 'concert' setting. Their first performance with me. I remember that rehearsal. I remember clutching my cell phone the whole time, trying to stay focused on praising those students for their wonderful singing. Struggling to hid that I was terrified and sleep deprived. I remember telling the other music teacher what had happened the evening before and that I was waiting for a call. When that call came, after rehearsal, thank goodness. The nurse said that I needed to "Just get here, we'll see you right away when you do". One problem though, I had a class to teach in an hour and was not going to be back in time to do so. Wringing my hands, shaking and holding back tears, I scoured the school for the principal, T.B. and when I found him (he was in a classroom...I had to pull myself together before opening the door to speak to him) I had the difficult task of explaining that I had an emergency and needed to get to my doctor right away. That I had a 5th Grade class coming in an hour. That I promise I will be back for the concert that afternoon. That I would call in case I was going to miss the 2nd Grade classes I also had scheduled that day. That I was so, so sorry. I was so embarrassed. New teacher, yanking the principal out of a classroom in a panic, requesting to leave and crying the whole time. Real professional. T.B., as always, was understanding and compassionate. He took my class for me (I hear that they played kick ball) and even offered a ride to the doctor. I can't tell you how much he reassured me that day.

So, Dad picked me up. Like I said, there are moments that, for whatever reason, burn themselves into the memory. Maybe it's just the light, or a smell, but they stay burned there. Dad stopped at a light just down the street from the school, next to a car wash, and asked to see the labs that the allergist gave me. He was so held together in this moment. He just looked at the papers, nodded and handed them back to me. Never indicated that anything was wrong, of the storm coming. But he knew. You can't work in Dad's field (home infusion pharmacy) and NOT know. I thank god for my father's strength in that moment and in the rest of that day (and has been all along. He was truly heroic.

Everything about my appointment at my GP's office (I am leaving his practices' name out of this because...well, you'll see) was a massive fuck up. I was ushered back to an exam room as soon as we arrived. Considering all of the panic leading up to this moment, the PA (physician's assistant) was surprisingly...clueless when he entered the room. He came in and plopped down in a chair across from me and dropped my file (labs included) onto the exam table. He then asked me why I was there. No, really. I'll repeat that: he asked me why I was there. I explained the debacle at the allergist and referred him to the labs in my chart. His reaction? Same as the allergist. I'm not kidding. The man was shocked.
(ding ding ding: Physicians reading this: REVIEW THE FUCKING LABS BEFORE ENTERING THE ROOM).

Much of the following moments are a blur of sounds, colors, feelings .... except for the moment when he turned to me and said the words "Well, it looks like you have leukemia". I can remember feeling like the air had been sucked out of my lungs. There are no words to discribe what the feeling is, deep in your chest, in your bones when you have those words said to you. I PRAY that there is no one reading this that ever hears those words. If you have, my comrade, I am sorry. in that moment, I know that my jaw dropped...well, more of a hang. That my eyes glazed. There was a small, framed picture, I don't know of what, just to the left of the exam table, that is where my eyes fell. Around the PA's rotund body, to that picture. Strange that I can't recall what the picture was...I don't even know if I said anything. My first thought was simple. "No, this is a mistake". Pure denial. Not me. Everything that you read about patients going to a place of 'No fucking way. Not me. Not now. Not cancer." is totally what happened to me. The PA then moved to sit in the chair next to me and pointed to different numbers on my lab sheet...something about blast cells...white cells...I remember his hand on my shoulder, asking me if I came with anyone. Yes, yes, my Dad is here. His name is Cliff, he's in the the waiting room. To this day, I don't understand why he left me alone to go find my father. The place was teaming with nurses. But there I sat. Alone. Crying. Convincing myself that it was a mistake. I actually thought "How do I get out of this?". Like, how much fucking sense does that make? You can't get out of cancer.

After what felt like hours, Dad and the PA returned to the room. I will never, ever forget the look on my father's face when he came into that room. He sat down next to me, I was crying. The PA started talking, explaining leukemia I think, and then got up to call what became my oncologists office for an appointment and said that their office would be repeating the blood work juuuuust to be sure it wasn't a glitch at the lab. What did I care about in that moment? What did I say in that moment? "Ok, well, I have a concert to conduct at 2 o'clock and a class to teach at 1. I may be able to get a sub for my 1 o'clock class but I HAVE to be back to work by 2 o'clock. No exceptions". I was bound and determined that if I was going to be out of work for cancer treatment and whatever else may come, that these kids did not have the memory of their teacher bailing on their first concert. Bound and fucking determined. The PA took his marching order and left to get me an appointment. Dad turned to me and asked if I was Ok. I don't remember what I said but what do I remember? Dad looking at me and saying "You're going to be just fine.". He said that several times that day. And he was right.

Now, here is why I will not reveal the name of my GP's (former GP at this point...) practice. When the PA returned, he informed me that I had an appointment on Monday morning (it was Tuesday), after the holiday, with Dr. So and So, who was an oncologist (I don't know who I was supposed to see). Monday. With a white blood cell count of 153. From labs taken a week ago (meaning that it was higher that day). He wrote me a prescription for Ativan and sent me away with a pat on the back, a sympathetic look and the promise that he would call the next morning with those lab results. In fact, even the nurse who drew my blood for the 'double-check' lab gave me a sympathetic look.

Driving away from that office, right to Rite Aid to have that Ativan filled, Dad and I sat in silence. I was crying, he looked serious. he just repeated, "You'll be just fine kiddo". We had my 'script filled. We picked up something to eat for lunch (I don't remember what) and he dropped me back off at work, though I think reluctantly, with an hour to spare before my 1 o'clock class. T.B. met me in the office and followed me back to my room with great concern on his face. I don't think he knows this, but he was the first person I spoke the word 'oncologist' to. He put his head down, I recall that he said something but I also recall that the Ativan was kicking in, and left me to myself in my room.

Those first moments of quiet, moments all by myself to let this information sink in, were horrendous. I stood in the middle of my classroom with the door closed and had an overwhelming feeling of invasion in my body. Like I could feel the cells in me. That they were dirty and I wanted them OUT. NOW. If you'll notice, I haven't mentioned telling Phil yet. If there is one thing that I had the power to change about that day (besides the whole cancer thing), it would be how I handled tell Phil what the PA had said. This was probably the worst way to tell your husband to be that you have cancer, um, ever. Well, maybe not ever, but it was pretty bad. I called him at work. At work. He demanded to know if I was sure, if they were sure. I said yes. Were they sure it wasn't Lupus. Yes. Ok. Ok. He would see me at home.

I taught those two 2nd Grade classes. We were just singing holiday songs after all, but god, it was so hard to hold back tears. It wasn't for the diagnosis that I was crying. I kept looking at those kids and thinking how much I wanted to see them in 5th Grade. Even thought about how much I wanted my own children. Even typing that I am tearful. Thinking about the kids that whole day reminds me that the world moves forward, no matter what happens in our tiny lives. Yup, I was just diagnosed with leukemia, but we have a damn concert to sing. And we are singing the hell out of this concert. I thought: It's going to be fun, you are going to remember it for being fun and NOT scary (because I can control that) and let Ms. S (as I was known at the time) handle the scary. I wanted to protect them for as long as possible. I needed to protect myself for as long as possible. Mom and Dad came to that concert (I keep calling it a concert, it was a sing along as well). Dad took pictures. Want to know what I looked like three hours after diagnosis? Here's your chance (student's faces blurred for obvious reasons):



This is one of my favorite songs to teach. "In the Window"- they are counting the candles for each night of Hanukkah

At the end of the concert (sing along), Phil was there. He left work, and came to pick me up. There is not much else that I remember about that day other than making the decision to call Maggie later that night. She was the first outside of my family to know. She dropped what she was doing (out a bar with friends, I think?) and came over. We sat on my bed and I told her and we cried. Somehow I ended up in bright red Santa-dog pajamas and that's the last I remember until my cell phone rang the next morning. it was the PA calling to tell me that the re-run labs drawn the day before were consistent with the diagnosis of leukemia. I called my parents. No one was surprised. It was Christmas Eve.

I wish I could say that my diagnosis story ends here. That we had our Christmas and then I went to that appointment on Monday. But that's not how things went. That isn't how things even SHOULD have gone. Here's how it went down:

Much later that afternoon, Phil and I were dressing to go to Mass at the church we were eventually married in, when my cell phone rang again. It was the GP, the actual GP (the head of the practice), calling in what can only be descibed as a fit. He asked me if I was sitting down, I said "Yes, and I know I have leukemia" (I don't think they get that response very often). He then told me that his staff (the PA) in a word, fucked up, and never told him that they, you know, diagnosed someone with leukemia that day and just filed my labs and report with the end of day papers. The GP was sorting through these reports to close the day when he came across my file. I believe a shit storm was had over there. He informed me that my white cell count had actually gone up to 188 (duh) and that this was very serious. There was an oncologist on call, Dr. Raj, who would be contacting me shortly. This was an emergency. So, there I was, in my damn bathrobe, hunched over my cell phone again. Dr. Raj called (asked if I was sitting down, same story as before) and told me that he was heading to the lab as we spoke to confirm what kind of leukemia I had. At this point, I didn't know that there were different kinds, that these things could be confirmed in labs that quickly, all I knew is that I was fucking scared. He informed me that I may need to go right to the ER, that this was very serious, but that he would call me back to let me know. If I recall correctly he even told me to begin preparing to go to the ER. After we hung up, someone from his office called ("Are you sitting down...", same story....not as nice) to say that he would be calling (no joke). After a tense hour or so, Dr. Raj called back to say that we did not need to go to the ER tonight, but that he would meet me there the next morning. I flat out refused. Was this smart? Probably not. Did he go with it? Yes. If that was going to be the last Christmas I spent on this earth, I was NOT (if I had any say in the matter) going to spend it in a hospital. After some (OK, a lot) of hesitation, he consented to 'giving' me Christmas. I was sternly told that if I became weak or began bleeding, that I needed to go to the ER immediately, otherwise, I was to be at the hospital at 8:30am SHARP on Friday (the day after Christmas). He would meet me there and I would begin treatment that day.

That evening was a tearful blur. Same motions as years past, different context. Like the earth had shifted a bit on it's axis. Everything seemed more hushed. Phil and I, because we lived together before we were married (gasp!) had made the commitment that we would NOT spend Christmas Eve together (in the same bed) until we did get married, that I would sleep at my parents and that he would sleep at his. That year, I slept on the day bed in my parent's basement and Phil slept, holding my hand, on an air mattress on the floor.

Friday morning, bright and early, we made our way up to the hospital, where I would stay for the next four days. I'll write later this week about that experience, especially now with two more hospital stays under my belt at a....much better hospital.

Why did I share this story with you? Well, mostly because I've never shared it with many of those who read this blog. Also, as a young patient I have learned that the reason that cancers in young adults go undiagnosed for so long is that we talk things away (or don't have insurance). This lump is nothing, I just banged my arm. I'm tired from work. I'm bruising from sports. I don't like the doctor. Doctors do the same. Is there an easy solution for this? No. Do I sincerely hope that my story, at some point, maybe not now, maybe not for many years, helps someone else realize that something is wrong? Hell. Fucking. Yes. Blood tests should be routine in everyone, no matter the age. Health care should be universal. 

So, to close this tale, I say thank you. To my parents, to my dear, sweet husband, to T.B., to Maggie, to Dr. Raj. For saving my life. Thank you. Two years ago was the worst day of my life. So much can change in two years. And all because of hoards of people working hard on me medically, spiritually, in my friendships. Thank you.

Much (homey) love and a bright, warm, loving MERRY Christmas to all of you.

Friday, December 10, 2010

Battle Wounds, Bubble Baths and Saying Goodbye

Battle Wounds. I quite like the cancer patient trend of referring to their various scars and markings as 'battle wounds', they certainly are, aren't they? Earned through incredible trial and worn with pride. Here are my battle wounds:

 Removing the dressing to reveal this was much more emotional than I anticipated. This is a two inch by two inch piece of flesh on a prominent spot on my body, which I have not laid eyes on in four months, but which has ruled so much of my life. Weird. Anyway, Phil says it looks like some Star Wars battle ship or something I say it looks like it's time for a bubble bath.

Ahhh bubble baths. My favorite girly indulgence. A few weeks ago I stopped at Lush (if you don't know about Lush, RUN THERE NOW, friggin' awesome stuff) to pick up a 'bubble bar' (solid bubble bath) in anticipation of having my CVC out. MMMMM orange oil scented santa head:

This little dude got tossed right in that big ol' bathtub, and yes, I lit some damn candles (Gotta work the romance...or something). Then I snuggled in for the first proper bath in a third of a year...followed by a rinse down in a proper shower. Having not felt water running on my face and chest since having the CVC placed, the sensation was....exquisite. It's the small things, no? I want to say that I will not take the feeling of a shower or bath for granted ever again, but I think that would be a lie. I hope to be able to feel so normal someday that I DO take that kind of thing for granted. Or not. 

Yesterday afternoon, after my final appointment with Dr. de Lima (who was surprisingly emotional, I'm telling you this guy is a great guy), P and I stopped up in the hospital to say goodbye to my friend Sarah. This was so emotional, I think for both Sarah and I (though I won't speak for her), especially because we both had to wear masks and gloves and weren't able to give each other a proper hug (Sarah is fighting viral pnumonia at the moment- and feeling really crappy). Getting to know Sarah here has been a blessing in so many ways: having someone my age to really talk to and open up to about all of those "they never told me" things, someone to laugh with, someone who I am confident would have been a friend, cancer or not. She's awesome and I'm really going to miss her, though through advances in modern technology (skype!! iPhone! facebook!) we can keep in contact until March when P and I will be back down here. To Sarah, if you read this: Air HUG!!!! :)

So, I must stop typing now and scamper off to zip suitcases, turn in our keys and head to the airport! Thanks Houston, for being the place where my life was saved, but I need to get back to my heart now. 

To my friends: thank you for the joyful messages over the last few days, my heart is bursting to see you! Slowly and over time, but see you non-the-less. 

For the last time from Houston: 
MUCH LOVE!!!!


Thursday, December 9, 2010

The Shakes

Four months ago, at about this ungodly hour in the morning, Phil and I were rising and dressing in our hotel room across the street from the hospital. We were preparing for a day of blood work and testing and appointments all to get ready for transplant. And I was shaking. With fear. Crippling fear.

This morning, Phil and I are rising and dressing in the apartment we've lived in since then. We are preparing for a day of blood work, no testing (thank spaghetti monster) and my final appointment (for now) with Dr. De Lima- all to get ready to go home. And I am shaking. With excitement. And joy. And, as always anymore, Tacro.

Now these are the kind of shakes I'm alright with:)

Wednesday, December 8, 2010

All you never needed to know about my CVC

Somehow the sound and video got out of sync, my apologies that I do not know how to fix this!



And Part II:

Pokin' and Proddin'

As with many things in life (one can argue life itself), one goes in much the same way as one goes out, transplant being no exception. Way back in August, before being admitted for conditioning chemo and transplant (can you believe that was like, 120 days ago or something?!), I underwent a battery of barbaric testing and procedures to be sure I was 'fit' for transplant and to gain a baseline of my health. All of those were documented in detail on here, if I may, I suggest checkin' out those entries if you're new to this blog (I can't believe I get to say THAT!) for a kick. Otherwise, you know the deal. Over the last two weeks those same tests, most of them at least, have been repeated to see exactly how fucked up (if at all) they and/or GVHD managed to get me. Turns out, I'm not very fucked up at all.

First up, and this was actually several weeks ago, was a Pulmonary Function Test. A PFT is really no big deal to be honest, nothing terribly dramatic involved, it's just....long...and weird. Basically, you sit in this weird pod that sort of looks like a smart car and are instructed to huff and puff into a tube for a half an hour. Remember Hospital Pranayama? It's totally like that but with a nose plug and pure oxygen. Way cool. Chemotherapy, reduced activity and GVHD can severely reduce lung function (read: capacity) and the pre-and post-transplant PFTs show my team whether or not I've suffered any damage. Nope, all good.  Lungs checked out in stellar shape. Gooooood stuff. Oh, as a cool aside: apparently I have very 'long' lungs- which was discovered in my chest x-rays after my port was placed. Maybe that helped?

Next, and this is everyone's FAVORITE: Opthalmology Exam otherwise known as The Paper-in-the-Eyeballs Test. At least this time I a) knew what was coming, b) had my Mom there to document the experience and c) did not have an asshole for a technician. In this gem of a test, the idea is to measure my 'real' production of tears against my 'fake' production of tears to determine if GVHD has damaged my tear production. "What?" you say, "I have 'real' and 'fake' tears without trying?". Why, yes, yes you do. Here's how it goes: they shove these little paper strips under my lower eyelids (the strips look like Ph strips for a fish tank) and then leave them there for 5 minutes. The paper turns blue where my eyes have teared up, indicating volume just like a dipstick does in a car. When those strips are removed, the technician gives numbing eye drops and the test is repeated. The first test shows 'fake' tears- fake because they are from the irritation of the strips being in the eye (uh, DUH) and the second shows 'real' tear production because the eye is numbed to the sensation of the strip. Creative torture, eh? My eyes are perfect apparently. Oh, and I basically LOVE my Opthalmologist here, Dr. Lee. She's this fabulously dressed teeny tiny woman who gushed over the scarf I was wearing (my Hermes from Maggie) and insisted on showing me her 'Hermes of the day' (I kid you not, she owns enough of those scarves to have an 'Hermes of the day'), it was gorgeous. Mom documented the Paper-in-the-Eyeball test (oh yes, the puff again, ugh, it's horrible for me to look at these but, it's what I look like sooooo....)

Test one: double chin included!


Test two: numbing drops make this MUCH easier.

Today was the final test in this battery, the dreaded Bone Marrow Biopsy. This will tell my doctors how well my marrow is doing- no CML? Donor cells doing alright in there? How much blood are you making? No surprises here, this one is painful, it is not fun and this is number....uuuuuhhmmm.....six? Seven? There are as many pencil-eraser sized scars over my hips and back of my pelvis and one more was added today so I don't know. My last BMB was done while I was inpatient during Itchfest 2010 and I was given Versed (a WONDERFUL drug that keeps you awake but leaves you with no memory of the event, just a nice mellow feeling) so I don't remember it at all. These have all gone basically the same way, with the exception of the very first one (just wait for THAT story...it's coming): lay on my stomach, chosen side of the pelvis is injected with copious amounts of lidocaine (I have learned to ask for two vials, much more tolerable), large needle shoved through flesh and into bone (you feel the needle hit and penetrate the bone because bone can't be numbed)- always with the comment that I have very strong bones which is then followed by 'lots of pressure' (fucking pain) and some grunting, bone marrow sucked out by one to four syringes which feels like being punched HARD in the back, then some scraping around for a bone sample and you're done. Yep, that's how this went. The results will be back in a week or so. And I can't get the bandage wet for 24 hours.

Wanna know what the best thing ever is though? Like, THE BEST THING EVER???

I managed to talk my team into having my CVC removed TOMORROW (Wednesday) instead of the Thursday! Yes, ladies and gentleman, this is the LAST NIGHT I will EVER have a FUCKING OCTOPUS burrowed into my chest. FUCK YEAH! Before this stupid thing is torn out of me forever, I wanted to share a video of exactly what the hell goes into living with one of these things. My next post will be that video (broken into two parts apparently because Youtube only allows 10 minute uploads and I'm a jabberjaws).

Having this taken out of my chest is the final symbol, to me at least, of leaving this behind. Well, not really leaving this behind, because I'm still very much experiencing it, but I am no longer a cancer 'patient'. I am a Survivor. I will have the scars to prove it too. The cancer is gone, left the building, so it is time to remove the constant flopping plastic reminder of the bastard as well. The removal of my CVC is a symbol of freedom. I am no longer tied to an IV pole to get the things to keep me alive- I'm able to either provide those things myself or my body is producing what it should. No IV Mag, no drugs pumped into my heart, no blood products. Just my body. So much like an infant having their umbilical cord cut. It always seems to come back to that infant analogy with transplant, doesn't it?

Tomorrow will be an emotional day, I'm sure. The day after, even more and Friday most of all.  What a spectacularly exciting and terrifying thing this all is. Thank you for sharing in this journey with me. As I've said before, it's far from over, the scenery is just changing a bit:)

Before I say goodnight to dream sweet catheter-free dreams, there are two very special shout outs that must be made. First, to my friend Sarah, who has been both a 'cancer friend' and very much a real friend too. She's back in the clink this week with a viral infection, which is a total fucking bummer considering that she JUST finished her last inpatient round of chemo over Thanksgiving. Sarah has been such a blessing to get to know, as well as her family, and I am so thankful for her. Please send Sarah some of that super powerful good juju y'all have been sending my way. Girlfriend kicks major ass. Also, I promised her friend that I would put his supercool local music website and broadcast on my blog because, well, it's supercool and you should always support local music. Check it out and enjoy: www.locallivehouston.com

The second shout out goes to the students in Stacey Roses' (Professor Rose? Health Educator Rose? What do you all call her?!) class at Springfield College in MA. Thank you all for following with me, cheering me on and most of all BECOMING DONORS (www.marrow.org y'all)! It is beyond humbling to hear your responses to my writing from your teacher. I hope you all had a wonderful semester and enjoy a restful winter break!

So, until tomorrow, dear friends. Deepest gratitude, as always, for everything and my heart is bursting to see you soon!

MUCH LOVE!

Sunday, December 5, 2010

Day 100

Finding the correct words, the most honoring words to type here...well...to say it is difficult would be an understatement. So I will default, as always, to honesty.

There is so much to feel today, so much to be thankful for, so much to remember and so much to look forward to today. This is a milestone, not a finish line, not an ending point, but a milestone.  One to be deeply appreciated, taken in with gratitude and mindfulness for it's significance, and then calmly passed. There is an enormous amount of fuss about a patients "100th Day" and discussion of the "100 Days" post-transplant, by both the medical team and patient. "What day are you?" is often asked before your name when meeting another BMT patient and, depending on the numeric response (I've only met one man who did not know what 'day he was'), one either responds with encouragement or excitement. I've been counting with beer (and other beverages) on the wall, some count with numbers on a calendar, every patient with their own way of marking those days until the big one (unless you're the guy who didn't know). But, what happens when it is Day 100? What about Day 101? (I can tell you what happens on Day 105...:) ).

Phil asked me this morning over breakfast how I felt about today. My response? "I'm not sure what to feel". All of this build up and, honestly, I expected it to be more dramatic. I expected to wake up feeling...different somehow. Quite the opposite experience I had 100 days ago on transplant day, really. I was all wound up, Phil and my family were all wound up, and the doctors were very much calm. "This is no big deal to us", "It's more dramatic for you than it is for us". Well, my dear M.D.s, it seems the tables have turned. For a variety of complicated medical reasons, the 100 Days are significant to physicians. Do I actually know why it's 100 Days and not, say, 3 months? Or 4 months? Why that number? No idea. But they know, and it's important to them and they saved my life and have kept me alive these last 100 days...so there ya go.


While meditating on the idea of being 100 days "old" and that this is a large marker in my recovery, the image of a mountaintop expanse came to me strongly. I could see in my mind a rolling forest, beyond that a range of other mountains. Feel cold, crisp air in my lungs and warm sun on my face. IN front of me, at my feet the path continued. The road kept going, not noticing that I had stopped to observe something that only exists for me. It occurred to me that this is not the top of the mountain. That damn mountain. This is a moment to pause and look around, a scenic ledge, where if you look behind you can see where you've come from, the faces of friends family and husband pausing as well with me, always with me. Ahead? Infinite possibility, infinite detours and rocky patches and twists and turns and CHOICES.

Another image, more of a presence, came to me strongly while picturing that mountain scape. My donor. 100 days ago, a 35 year old man somewhere in this nation, was put under anesthesia, had his pelvis drilled into 100 times, his bone marrow collected and awoke a hero. His marrow, his life force, that which allows HIM to live, is what is now allowing ME to live. I am full of someone else's love. Because that's the only thing that can allow that sacrifice to be made. Love of life. To 35 year old male resident of the United States, today I pause more than most any day so far, to give great thanks to you. IN 265 days I will be allowed to thank you in person, should you consent. I pray that the last 100 days have been full of blessings for you, that you somehow have felt my gratitude through the universe, that you know how deeply you have changed me, what you have taught me. Showers of blessings and love to you, dear donor.

There is another that I must pour out gratitude to today: My Mom. Mom, you dropped everything, said goodbye to Daddy and came down here to care for me. You supported Phil and I in so many ways. You communicated with my medical team when I was too garbled to do so and reminded me to take my meds, flush my line, call this Doctor, refill that med. Thank you for helping us when we couldn't help ourselves. I love you.

As Phil and I prepare to leave this week, we pause to thank everyone who has supported us here. In every way. This is far from over, but this milestone could not have been reached without the loving support of those that we are blessed to call friends and family.

So, Phil, to answer your questions, I suppose today I feel thankful, lucky, scared, joyful, very puffy, hopeful and great anticipation for the things to come.

NO, I didn't get fat, I'm really just THAT puffy in my face. Gross, right? Good thing my husband is hot:)

Much love, Philly. See you on Friday night!

Monday, November 29, 2010

You Got Plans for December 10th?

I do:)


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




:D

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.....


HOME!

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 today....no cheating Russia!) Isn't it ridiculous what becomes exciting these days?

As much as my CVC has been a godsend- no needle sticks, lower risk of infection from fewer needle pricks, fast infusion of necessary drugs, providing the means by which my magic donor cells entered my body, you dear readers know that I still hate the damn thing. When it was first put it in August, the procedure was PAINFUL on many levels. Originally, I had three lumens, and they were HEAVY. They got tangled in my bra, in my hair (well, only for 24 hours, I shaved that shit off the next day), the bandage was huge, all of the muscles in my shoulder, neck and chest cramped down on it, uncomfortable stuff. Not to mention all of the psychological tweeks involved in seeing something hanging out of your chest that is IN A VEIN IN YOUR HEART. Creepy. At the end of my inpatient time post transplant, the three lumens were removed and replaced with two brand-spanking new lumens. Much more better:) And I had begun to 'get used to'- not be as annoyed by- the damn thing.

When my GVHD showed up on my skin, it nestled in nicely under my CVC dressing, sneaky bastard, because I couldn't put my steroid cream on the area (must be sterile, you know). Thank god that was fixed due to the oral steroid treatment...I was going to have to take matters into my own hands on that one...wasn't gonna be pretty- me ripping off my dressing and taking a fork to the skin to itch for relief (not so sterile either). So between the scaring and sensitivity from the actual GVHD, oral steroids cause skin thinning and easy bruising as well, dressing changes had been....um...FUCKING PAINFUL.  A few weeks ago, after suffering through just one too many dressing changes where my skin was literally being torn off by the adhesive from the derma-patch (big white dressing that most patients have) and discovering that one of the stitches that holds the actual port onto my body was becoming embedded (bad news, makes for ouchie removal), Mom and I threw up our hands and I went to IV team to ask them for mercy. And mercy they gave me in the form of a brand new squishy pink (!) dressing that, no lie here, changed my friggin life. I still hate the lumens, the whole thing creeps me out, but I'm now comfortable physically (kinda). The old patch made my bra straps run right over the insertion sight...ouch...and stuck out of the neckline of nearly every shirt I have. It was stiffer so sleeping on it felt like I had wedged a small notepad in my bra and was trying to curl up around it. Not so fun. The thing got dirty easily, that edge of band aide lint kind of dirty and would peel off at the first sign of moisture (read: working out or yoga made this thing run for the hills). Now? It hides under nearly all of my clothing, it's padding prevents my bra straps from becoming torture devices, it stays put during and after physical activity, I don't feel it at all when sleeping (except for when my lumens get stuck in my armpit, which is TOTALLY COOL...but I won't blame the dressing for that...). In fact, it makes me not mind the thing as much. On the topic of the lumens, it is often difficult to figure out where to put them when I get dressed. What does that mean, you say? Well, if I stick 'em in my bra, it looks like I have a bizarre third nipple, if I move them to the side toward the center of my chest, you can see the clamps. Other side? Armpit tangle time. This is something SOMEONE should have coached me on! Jeez.

The emotional pain (yes, I will use the word pain) of having this CVC has been the toughest to deal with. It's like a badge of suffering stitched right onto my chest. How do you practice non attachment when something is literally attached to you? Now that my time with my CVC is drawing to a close, I've started to make an informal mental list of all of the things it has allowed me to do, rather than the things it has kept me from doing. This list, I hope, will be very handy should I find out today that my body is not quite ready to release this particular hunk of plastic.

So, off I go into today, which may be my last day with a 'post transplant' schedule up at ATC, it may not be, but hey, wouldn't it be friggin' sweet if it were? Tomorrow I'll see my endocronologist about my wacky, but controled, blood sugars and Thursday, I GET STRIPS OF PAPER SHOVED IN MY EYES AGAIN!!! Yeah, you know you remember that post! Man, I remember when Thursday was "ThirstyThursday"...not "Torture Thursday" (which would sound better as a Tuesday anyway). Maybe, just maybe, I'll have another proceedure to add to this list.....

Hoping that you all had restful, joyful and warm Thanksgivings surrounded by loved ones. I was blessed to have that this year:) Thank you for the messages of support, the cards, the e-mails, the text messages, everything, dear friends. Everytime P and I hear from you it's like seeing you and hugging you in person.

Much love y'all!


ALSO! a HUGE congratulations to my friend Sarah who finished her last inpatient round of chemotherapy over the holiday and is doing SPECTACULARLY well. Rock on sister!!!!!!

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 is...um...you 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 (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!

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 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:)

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 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! 
There's this other thing happening, this really REALLY weird and painful and annoying other thing, that warrants it's own (several) paragraphs and pictures.

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:

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!)