Friday, December 24, 2010


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: 

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'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:

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 ( 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!


Sunday, December 5, 2010

Day 100

Finding the correct words, the most honoring words to type 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 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!