Friday, December 30, 2011

Learning the Real Meaning of Christmas

This blog has been difficult to keep up with of late, this is no secret. In May of 2010, I started writing here as an outlet for my thoughts and a way to stay in contact with loved ones while away in Houston for transplant. It continued as the same when I returned home and stayed that way for awhile. In the last few months, as my life and health have stabilized, writing has taken a backseat to living. This, admittedly, has been just fine with me. Someone will ask, I say I'm going to post, and then I get wrapped up in something else and then can't get the process started.  Or something happens that I want to write about, but can't bring myself back here.  It has become very easy to temporarily forget everything that happened in the last 12-18 months.  The last few weeks changed this pattern dramatically, which is why I'm here again, you're here, and there are words here for the first time in weeks.

Let's jump right in (bum bum bum- a little joke for my music friends. Sorry.). This will be a bit fractured, there's quite a bit to write.

About ten days ago, I began to feel tired.

Not the kind of oppressive exhaustion that came with my diagnosis three years ago. This was more...normal (for me). It coincided with a very busy and stressful time at work, a busy weekend spent outdoors at Henalopen State Park in DE for First Descents, the holidays and the undeniable onset of a little cold. Having just seen my team at PENN two weeks before, and having received a (relatively) clean bill of health, I was not concerned. Well, until last Wednesday.

That morning I got up a little later than normal as my work schedule allows me a few extra hours on Wednesday mornings. Usually, I am my most alert this day, which is probably what saved my butt this day. I woke up and knew something was wrong as soon as my feet hit the floor. My vision wasn't right. Not "call 911" not right, but certainly "something is up, watch out" not right. If you've ever passed out from light-headedness or had a head-rush from standing up too fast, this is exactly what it was like. I had dark spots and floaters at the edges of my vision, as well as those glitter-like marks that explode just before reaching the center of my line of sight. I got ready and walked to work, noticing that I was both more breathless than normal (I was on the phone with my Dad) and that the spots weren't going away. I taught my first few classes with this strange phenomenon in my vision. In hindsight, this was stupid. Calling my doctor or going to the hospital is absolutely what I should have done, however, when you're used to odd things coming and going without consequence AND have just seen blood work suggesting that you're fine, it's very easy to take a 'watch and wait' mentality. As I've come to know, sometimes we need to mirror of others to know when something is very wrong.

So, here I am, at lunch with a few colleagues and this nagging (though not extremely intrusive) vision thing and my friend grabs my hand. My skin was mottled.  The look that your skin gets when you've been out in the cold with no gloves for a little while. This was something that P had noticed the night before, but it's cold here.
Cool skin, bro.
Sufficiently freaked out, I downed the rest of my lunch, hightailed it back to my classroom and snapped a picture to send to P and to my doctor, just in case. I then scampered down to the school nurse and requested that she take my temp and blood pressure as well as popped a Benedryl (just in case). I decided to wait until my day was over (only an hour, which would give the allergy pill time to kick in) and then page Dr. Porter. Suffice to say, it didn't work, so an hour later I paged my team. A very generous coworker drove me to PENN (with the permission of a very generous Principal who allowed her to leave early to get me there- I don't and could not have, driven). One very confusing CBC and frightening meeting with my NP later where I was warned to stay very warm, I was sent to another hospital to have my eyes checked. P met em and this ANGEL of a coworker and friend at the other hospital, where my eyes checked out just fine. My NP called and said that my blood work was coming back 'inconclusive' due to what appeared to be a virus which was making the lab equipment unable to find accurate results and that I absolutely needed to be at PENN on Thursday morning for more specialized testing and to see my doctor. It was suggested that this may be mono. "He wouldn't insist you be here if it wasn't important". Oy.

The next day, my sweet mother-in-law drove me back down to PENN for a marathon 4 1/2 hours of testing. I'll repeat that: FOUR AND A HALF HOURS. God bless the phlebotomy team there because they did WORK that day. Every test was unique and unusual. Every one required special instructions. Swabs in the throat. Swabs in the nose. A million needle sticks in veins that, shall we say, just aren't what they used to be. What was becoming apparent was that my body had stopped making red blood cells, meaning that I was severely and acutely anemic.  More than your 'take an iron pill or eat a steak' anemic. This was 'I have less than half the hemoglobin (oxygen carriers) level that I should. This was NOT a relapse. Allow me to type that again: I STILL DON'T HAVE CANCER ANYMORE (is that a sentence?)

The question was: why?

Well, back to the advice to stay warm and the odd mottling on my skin. My team was beginning to suspect that I had acquired something called Cold Agglutinin Disease, which you can go read about here: SCARY (because it's complicated and scary and I'll let the professionals do the 'splaining). Did you read it? That part about lymphoma and more chemo? Yeah. That. The thing is, the lab testing to confirm this requires that the blood stays body-temp warm, which is nearly impossible, in order to sense the antibodies before they precipitate. After a few hours of inconclusive blood tests (and others which take a little while to 'cook'), I was called back to speak with Dr. Porter. He informed me that my hemoglobin levels were continuing to drop to unsafe levels, that they had some suspicion of why but couldn't be sure and that in order to keep me safe I needed to be admitted to the hospital right then. As in, there was already a bed for me on his floor (he was, thankfully, on inpatient rotation). Oh, hey. There's that deafening rushing noise in my ears again.

Nearly three years to the day since being officially diagnosed with leukemia (and exactly three years to the day since my allergist read those ill-fated test results) and here I was AGAIN. To say that I was heartbroken would be a vast understatement. All I could think about was that my students had their concert the next day and that I wouldn't be there. I had fought so hard to be there the day I was diagnosed and made it, and now I wasn't. They had worked so hard and it was going to be ruined. Again. P was going to be sitting by a hospital bed. Again. Christmas was marred for my family. AGAIN.
Not an ideal location for an IV. Not to be dramatic or anything.
Long story, short (hah.), I get admitted and have my IV placed, which the poor nurse had a hell of a time doing (not enough blood will do that...) and met my new benign hematology' team- one of whom startled the bejesus out of me when I realized that I went to high school with him (He is a couple of years older. I suppose it was a good thing that I had my wits about me enough to place face). My MIL stayed with me until P could get there, straight from work.  After giving my full history (sooo an hour later) my team set about trying to both get an accurate blood sample and find me a few units of compatible blood- having what amounts to two immune systems and a history of GVHD makes transfusions really difficult. Funny story: one of the hematologists was trying to figure out how to keep my blood warm enough for this particular test and started talking about filling a large bucket with hot water to place the sample in. He had a very detailed plan for this, much to the chagrin of my nurse, and seemed REALLY excited about this plan. Somewhere along the way he abandoned this idea, or someone told him that putting a blood sample in a bucket of hot water wasn't uh...a great plan, and he returned with several warming packs and some rubber bands. Just a note: there is a such thing as a 'blood warmer', which is like an incubator. So, that.

To be honest, I don't remember too much of the next 30-ish hours (which is how long it took to find, irradiate, leukodeplete and warm the only two compatible units of blood in Philadelphia) because I didn't have enough blood to function like a human. I do, however remember flashes of friends and family coming by with tons of cheer, for which I am so grateful. Grateful beyond words. I remember the image of my loving husband sleeping on a pull-out chair next to my hospital bed. Of his sweet bleary face at 4:30am when the lights were thrown on for vitals (Seriously, STOP DOING THIS YOU SADISTS). These flashes of memory set the stage for the greater realization I had during the next few days on Rhoads 7.  Additionally, in a strange twist of fate, the night charge nurse on my floor was an old friend from high school. In fact, many of the nurses and staff were locals from my area, which made the cold sterility of the hospital much, MUCH homier. T (my nurse-friend) hung out in my room and gossiped when she had a few moments. She assigned me the best nurses, not that they all aren't. She was even the person responsible for the mural on the window of my room. Thank you, T. Thank you.

My nurse J, T and C getting me some blooooood. Look at those smiles:)
Blood. Mmmm.

The mural, courtesy of T, on the window to my room.

Goals. Thanks John.

Another window by T.

It became clear on Christmas Eve after two infusions of steroids, that I may not, in fact, have Cold Agglutinin Disease, but rather some other form of hemolysis (destruction of red blood cells) which may or may-not have ANYTHING to do with having had a transplant. Which led to the questions: Is this GVHD: No.  Would this have happened anyway? Answer: Maybe, and it does to perfectly healthy people when they get a common cold virus. Could this happen to my donor? Answer: Yes. Which just made my stomach turn. This guy doesn't need this shit. I've at least had enough experience to deal with these type of things, I pray that it never happens to him. My team concluded that my RBCs had risen dramatically with the help of the steroids and blood and that if those numbers stayed steady or continued to improve, I could be released on Christmas Day. The odd changes in my vision had improved (though not completely gone away) and my skin hadn't become worse, or really changed too much. So, yeah. My family (and some sweet, sweet friends) spent Christmas Eve and Christmas Morning in the hospital. I feel incredibly guilty for this. What I wouldn't give for those around me to not have this experience. To not soak up so much damn attention.

On Christmas Eve, after my family left, the nurses circled the floor caroling. T was, of course, the brain behind the operation and invited me to join them. This, friends, is what this experience was really about. Remembering the REAL meaning of Christmas. Giving. Love. Sacrifice and selflessness. My religious and spiritual views be what they may, it is impossible to escape this realization. It was an honor and a very special opportunity to be able to lend my voice that night and it is something that took me out of my own sadness and brought me back. Though my students performed without me on Friday, and reportedly did a wonderful job, my heart was aching for not having been there for them. This helped fill that void.  It has been easy to forget, willingly or not, everything I learned in the last year about what is important. When fear and crisis is not at the front of your mind all the time, little things start to take over in importance. In many ways, this was the best Christmas I have ever had. The right balance of humility, emotion, family, loved ones and PERSPECTIVE. Christmas isn't about the traditions, even if it really is. It isn't about the tree and the presents and the TV specials and the cookies (even though it is). Christmas is about the spiritual lesson of gift and sacrifice. This is one of the greatest lessons I could ever have asked to REALLY learn. We all know the story of How the Grinch Stole Christmas. Well, this Cindy-Lou Who had Christmas without the roast beast. Christmas comes, no matter what, it's all about your heart and who and what you make it open to (or grow for).

Waking up in a hospital, on the transplant floor, with patients in the rooms around me that, frankly, may not see very much of the new year, brought me back to reality. Reminded me to be thankful for the blessings of the people in my life and the luck I have had so far. Seeing the families of those patients surrounding them, opening gifts, smiling, is something I will take with me forever. Yes, instead of a Christmas breakfast at my parents house, I had mine on a hospital tray. but I could eat it. And Enjoy it. And open my eyes to my husband. Forgive me if I have become too sappy.
Christmas breakfast.
My nurse on Christmas was, simply put, the most bubbly delightful person I have ever met. Oh, and we share a nearly identical name (Thanks, T!). This is her on Christmas morning and her drawing of what my 'gift' should be. To go home. Which I did. Call it modern medicine, call it magic, but my hematocrit (which is just a name for the percentage of red cells- a more accurate number than hemoglobin at that point) had jumped dramatically over night. So dramatically that my team wanted to wait for the results of my afternoon blood test to be sure it wasn't a fluke. It wasn't. So, around 3:30 on Christmas Day, after opening gifts from my family, my doctor walked in and performed the fastest discharge I have EVER seen. 15 minutes. Here is my family hauling my things out of the hospital.
My WONDERFUL nurse L.S. discharging me.


Run. With presents.
Being hopped up on steroids and overjoyed to be home for dinner, P and I ran around our apartment like mad straightening up, wrapping, cooking and laughing. We, together, made Christmas happen in under three hours. Steroids. I tell ya.

P's family joined my family at our apartment for, what turned out to be, the most fantastically wonderful Christmas dinner I could have asked for. I am so thankful that they could all gather with us and that, of course, I was home. I am thankful for the gift of love. For the gift of renewed humility and perspective. I am thankful. P and I had our 'Christmas Morning' the next day, which was just as fantastic.

According to the test drawn on Tuesday, my RBC has stayed steady since Christmas Day, though the actual cause for this sever anemia is at the moment unclear. The 'what happened' is that my body started eating my red blood cells. The 'why the hell did it do that' is a mystery. P is taking me to see my team tomorrow, maybe there will be more answers, maybe not. Either way, the last ten days have been one hell of a ride. Aside from still being a anemic, I am now zapped on steroids again, though not even a third of the dose I was on last year when I went all Staypuft. Steroids make you both feel like hell and like a million bucks. Seroids. Seriously, I tell ya.

When I knew more, I want to say that I'll post here. I probably will. I want to say that I'll write more, but honestly, I hope that things settle back down into not having anything to write about. There is one topic, one person actually, that I want to write about. That deserves to be written about. But we'll get there:)

Whew. Did you read all of that? Holy macaroni. Thank you. No, really. Thank you. For the last 18 months. For however long it took you to read what I just wrote. For being here. I hope that you had a wonderful holiday, whatever you celebrate, with your friends and families and the things you love and cherish most.

Much love, sweet friends.

An ornament on the floor tree, which OBVIOUSLY won the hospital decorating contest.