Well, hello. It's been more than a year since I've written here. The changes that have happened in the last year are astounding, unbelievable even. But I won't write about them now or, maybe, ever. I came back here to change a few privacy settings (I've been getting spam in the comments section of past posts) and discovered something I wish I had published a year ago. It isn't finished, but it is beautiful. This is a piece I wrote about the loss of the Fantastic Ms. Fox in January of last year. I won't say anymore, just read:
Allow me to get the easy bit out of the way by saying that I am, for the most part, fine. Still steroidal, still no idea what happened to my sad little RBCs, still a bit blotchy. Though now I have the pleasure of being a bit puffy in the face which is just bleeding awesome. Let me tell you how much I've enjoyed looking in the mirror and seeing my head fat up again. Does wonders for a girl's self-esteem, let me tell you.
There is no easy segue between my missing red blood cells and what I really need to write about tonight, so I'm just going to write. The ability to write this post is thanks to a drug whose name rhymes with 'shmanshmax'. Better living through chemistry, or something like that.
In the last two months I have lost two of the most vibrant, influential, generous, beautiful, deeply inspirational women in my life. Saying that "I" have lost these women feels selfish, the world lost these women. However, I'm in a place of extreme tunnel vision (emotion?) and can't muster a much more honest way to put it. Each of these women deserves an entry here on their own, but I selfishly can't manage it. These women each inhabited overlapping parts of my life: childhood, yoga, friendship, work, marriage and, worst of all, cancer. If you asked me three years ago to write down who from my life I would project to be ripped from this life prematurely at the hands of cancer, neither of these women would have crossed my mind (the thought of actually writing something like that down is so gruesome it turns my stomach). For tonight, I'll write what I have accessible. Call it 'self care'.
Two days before Thanksgiving, Laurie passed away. Laurie, the Fantastic Ms. Fox, is someone I've written about here before, though I've never shared her name. Something tells me she would be alright with me writing this now. Laurie was Phil's neighbor and his mother's dearest friend. She was like a favorite aunt to Phil and treated him (and me too) like her child. We practiced yoga together at the same studio and would sometimes walk together to class ( I pass her house on the way). The first time I met Laurie (and her husband) was on the first Christmas Eve Phil and I were dating. It was in his parent's kitchen and it was about ten seconds after his parent's dog, Jake, peed on my feet. I was mortified and Laurie thought it was about the damn funniest thing in the world. Laurie and her husband were present at every holiday, every party, every birthday, ordinary days, Saturday morning yoga classes, our wedding. She pinned Phil's boutteneir on his tuxedo before leaving for the church and nearly danced a hole in the dance floor at our reception. She and her husband are in the background of most of our pictures.
When she was diagnosed with breast cancer, I remember watching my mother-in-law fall apart. I remember watching Laurie sun-salute her way back to health after radiation and got a thrill for her whenever she pushed up into danurasana in class. Promising that she would kick into handstand she had an incredibly strong 'L-pose'. Laurie beat breast cancer. I was with Laurie when I got the phone call that my bone marrow donor had been confirmed and my transplant dates scheduled. We had gone to lunch and she had picked out some comfortable yoga clothes for me as a gift. She took line dancing and piano lessons and I think she even took French. She could COOK. Oh my god, could she cook. Her cheesecake would haunt your dreams. She was no-nonsense, to the point, but incredibly warm. You were drawn to her. Everyone was. She and my MIL would laugh and laugh and laugh in this really infectious way. She had a way of saying "Oh, my GAWD" that I can still hear and still makes me crack a smile. She listened to Lady Gaga.
Then Laurie got sick again.
This time it was pancreatic cancer and it had spread. She was in pain. She was tough and she fought again but this time the cancer was angrier. She started going to treatment at the same hospital I did so I had the chance to visit with her once or twice when we both had infusions or appointments on the same day. Laurie asked me to come play harmonium for her, so I did. I sat on the floor of her beautiful house and laughed with her when her cat climbed inside of the harmonium case. We talked about cancer and she gave me some of her cook books. I found tiny scraps of paper marking her favorite recipes, and ones she planned to make, in the pages of these books a few weeks later. There are pictures of this day that make me cry. When her hair started to fall out, Laurie asked if I would come with her and her sister to help pick her wigs. She LOVED shopping and had a hell of sense of style. We had a wonderful day and the memory of it is one of my most cherished. Laurie worked at a private school not too far from where we live and she was beloved there. Known for her sympathetic ear and full candy bowl, the students and faculty loved her. She worked until she simply couldn't anymore. When she went to hospice, the walls of her room were covered in pictures and letters from her students, all emblazoned with her signature 'fox'. She read every one of those notes. I brought the harmonium, Laurie's harmonium, to the hospital and played for her. She died quietly and it was breathtakingly sad. At her funeral I heard stories about how much Laurie had done for everyone in her life. She was a light in this community and her touch has rippled so far. It will continue to ripple through our lives and for that I am so grateful. I hear her voice whenever I sit down to play harmonium. It's her way of living on in a very tangible way in my mind. I can feel her in the vibration of the floor, the resistance of the air in the bellows, hear her in the drone of the reeds.
I've been unable to write about Laurie until now. Usually when a 'cancer friend' has passed, I write here within a few days. Laurie was not a 'cancer friend', she was a friend who was stolen by cancer. I loved Laurie and I miss her terribly. Every note I play carries her in it and THAT keeps her beautiful, magnificent, FANTASTIC spirit alive in this world for me. Rest sweetly, peacefully and in the light, Laurie. I love you.
Tuesday, January 29, 2013
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.
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.
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.
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.
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.
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.
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.
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| Cool skin, bro. |
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. |
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:) |
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| Blood. Mmmm. |
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| The mural, courtesy of T, on the window to my room. |
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| Goals. Thanks John. |
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| 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.
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| Christmas breakfast. |
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| My WONDERFUL nurse L.S. discharging me. |
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| P is HAPPEEEE |
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| Run. With presents. |
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.
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| An ornament on the floor tree, which OBVIOUSLY won the hospital decorating contest. |
Thursday, November 3, 2011
Peek Behind the Curtain
So, hey.
It's been awhile. In fact, it's been something like six weeks since I've written here. This is not an indication of the mundane-ness of life around here (I've said it before, I'll say it again: my blog = I get to make up words). To the contrary! The last six weeks have seen some major awesome sauce.
At the moment I'll save the wicked long post for early next week and just say this: tomorrow I'm catching a train to NYC to soak in some FD love and cheer on Team FD at the NYC Marathon. Though it seems that cancer is still a dominant feature in my life, and I'm alright with that, MY cancer is not. Still in remission, even if I am still majorly screwed up for it. Lo, that's for another night.
Good to see you around, friends. Oh, and I have a guest blog in the works so be sure to stop by again soon for that too (See Hot Lips?! I promised:))
For now, stay cool and know that I send you MUCH LOVE!
It's been awhile. In fact, it's been something like six weeks since I've written here. This is not an indication of the mundane-ness of life around here (I've said it before, I'll say it again: my blog = I get to make up words). To the contrary! The last six weeks have seen some major awesome sauce.
At the moment I'll save the wicked long post for early next week and just say this: tomorrow I'm catching a train to NYC to soak in some FD love and cheer on Team FD at the NYC Marathon. Though it seems that cancer is still a dominant feature in my life, and I'm alright with that, MY cancer is not. Still in remission, even if I am still majorly screwed up for it. Lo, that's for another night.
Good to see you around, friends. Oh, and I have a guest blog in the works so be sure to stop by again soon for that too (See Hot Lips?! I promised:))
For now, stay cool and know that I send you MUCH LOVE!
Tuesday, September 20, 2011
Gratitude List
Last year, on my 25th birthday, I was laying in a hospital bed, feverish and in pain (and not just a little angry about being there). So I wrote a list of the things I was grateful for, one for every year I've spend kicking around this planet (can be found here ). The exercise proved to be one of the most meaningful and heartfelt pieces I've ever written. It allowed me to openly express my deep gratitude to those who ought to know and, at a time when I was feeling decidedly unsure of my future, reminded me what a blessed life I lead.
Today, on my 26th birthday, I will start my day doing the same.
*I am grateful for my husband, who stood by me this year, at every doctor's appointment and infusion, patient with every meltdown, hopeful with me for our future together and the life we can now build. I love you.
*I am grateful for my loving parents. You uprooted your lives to support P and I and were always there when we needed you most. As you said 'you were there the first time I was born and can say you were there the second time, too'. I love you
*I am grateful for my brother and sister who came and hung out with me while I was stuck in the house, texted me about daytime TV, stayed calm through it all, become better friends (and climbing partner) than I could ever hope we would be. I love both of you.
*I am grateful for my Nan, with her calm but direct way of knowing. For every note she sent (one for every day I was in Houston) and every phone call, skype and blog comment all with the best advice and tons of love. I love you, Nan.
*I am grateful for my In-Laws, that we share such a wonderful relationship. You are a blessing to us and everyone you meet and you raised a fine young man that I am proud to call 'husband'. I love you and Happy Anniversary.
*I am grateful for my Aunts, Uncles and Cousins (from both sides), for coming to see me in Houston, writing endless cards and letters, commenting on here, ringing me on skype and calling to give love and support. For being positive, loving and generous, always. Oh, and reminding me that I 'don't have to wear that wig around us'! I love all of you.
*I am grateful for the community of teachers, parents and administration with whom I work. You were endlessly supportive and enormously generous with your time, effort and caring last year. You welcomed me back to my classroom with huge smiles which melted away the anxiety and a big ol' chocolate cake to sweeten the deal even more. Thank you
*I am grateful for my students. Your cards, drawings, songs and photographs (of which I've kept every single one for nearly three years- come see me when you're all grown up and I will show you how much you meant) carried me through and your bright smiles welcomed me back. Your love and kindness has taught me more about how to be human than you'll ever know. Thank you, I am thrilled and honored to call myself your teacher again this year.
*I am grateful for my overwhelmingly wonderful friends, especially the ones who have been part of my life for a long time. Your steadfast caring and love taught me so much, I hope to be as good a friend to you as you have been for me. For the benefits, the cards, the visits, the days walking around the mall because that was all we could do, the text messages, for everything. Thank you and I love you.
*I am grateful for new friends who became like old friends so quickly. In the face of your own struggle, you reached out. Watching you heal and flourish and fight and WIN has been humbling and an inspiration. I hope to pay back the love and support to you tenfold. I love you and your families.
*I am grateful for those who fell away over the last few years. You taught me patience and forgiveness. You taught me how to be a better friend and give more of myself in your absence. Thank you
*I am grateful to have known too many sweet friends who are now resting with angels. Craig, Sarah H., Olivia, Montreal: your beautiful lives set an example for what is truly important. Love and family. Thank you for sharing a small piece of your lives with me, I miss you.
*I am grateful for the nurses who helped heal me, both at MD Anderson and at UPenn. You save lives and you do it with compassion. You take care of our bodies and our hearts, sitting by the bedside listening, coming in with a funny story, lingering for a moment or two when you see we're lonely. Thank you for what you do and who you are
*I am grateful for my doctors and nurse practitioners, both northern and southern. Your dedication to healing and to making a difference shows. You are compassionate and witty- not something many in medicine can claim. Thank you for your hard work and vast knowledge.
*I am grateful for the scientists, researchers, pharmacists, nursing assistants, interns and secretaries who keep the whole juggernaut moving and bring about the changes that save lives. You are often forgotten but immensely important pieces of the puzzle. Thank you for saving my life.
*I am grateful for First Descents and the volunteers, counselors, donors, staff, board members, chefs, guides...the list goes on...who dedicate their time and hearts to this organization. You do an indescribably important thing. Thank you for teaching me how to live again, giving me a place to belong and opening up an enormous world of possibility and adventure I didn't know I was missing. Thank you, thank you, thank you.
*I am grateful for my FD family from Camp BAMF. In a few short days you became closer friends than some I have known for years. You came with your hearts open and smiles wide and I am so honored to have shared that experience with you. You shattered the illusion of the broken cancer patient and soared sky high, cheering everyone else on along the way. You are stunning and, as I said, AWEsome. Thank you and I love you
*I am grateful for the practice of yoga, that it was there when I needed it most and stayed there and gave me the tools to get through the rough times and rejoice in the good times. For giving me my body back and allowing me to love it again. It truly was the cushion to fall back on, reminding me to breathe and lead from the heart.
* I am grateful for the generations of yogis who came before me who learned and shared their wisdom. For the teachings of old and new, the principles that guide and the traditions that sooth and heal. For reminding me that the learning is never finished, there is always more.
*I am grateful for my teachers. You share you wisdom and open your heart. You are passionate about what you do, and it shows. To my yoga teachers, thank you for your generosity, your encouragement, your warmth and your perseverance. To my harmonium teacher, of which I also thank my yoga teacher, you brought the music back out of me and opened a new world of sound that will hopefully take many lifetimes to explore. To my dance teacher, you helped me unlock my body again. Taught me to feel like a woman and move in a joyful way. Thank you. I am humbled to be your student.
*I am grateful for the sun which warms me, the grass that supports my practice or a nap, the sky that is always promising even if I can only see it through the window, the forest and mountains that call to me and were the place where the real healing started, for the ocean which sooths, the air that sustains me, the rain which washes everything clean. This is a wondrous world and I and grateful to have more time to explore it.
*I am grateful for the small moments. Moments of unexpected but memorable happiness. People can be so good to one another, if given the chance.
*I am grateful for those of you reading this. I grateful for your time and for your kind comments which often move me to tears. You gave me the opportunity to share this journey and learn about myself in the process. This is priceless. Thank you.
*I am grateful for this body. The way it can move, support, heal, change. That it is perfect in its imperfections and I love it. I promise to take care of you, body, because you have taken care of me.
*I am grateful for this beautiful, beautiful life. That I get to live it, breathe the air, dream, explore and love and experience enough to be grateful for is amazing.
*I am grateful for my Donor. For the sacrifice you made so that I may live this beautiful life. I think of you every day and pray that you are also living a beautiful life, for you deserve at least what you gave. Thank you, from the bottom of my heart.
Much, grateful, humble love, friends.
My writing has been sparse as of late, I'll explain in another post but know that everything is wonderful. I hope you are too.
Today, on my 26th birthday, I will start my day doing the same.
*I am grateful for my husband, who stood by me this year, at every doctor's appointment and infusion, patient with every meltdown, hopeful with me for our future together and the life we can now build. I love you.
*I am grateful for my loving parents. You uprooted your lives to support P and I and were always there when we needed you most. As you said 'you were there the first time I was born and can say you were there the second time, too'. I love you
*I am grateful for my brother and sister who came and hung out with me while I was stuck in the house, texted me about daytime TV, stayed calm through it all, become better friends (and climbing partner) than I could ever hope we would be. I love both of you.
*I am grateful for my Nan, with her calm but direct way of knowing. For every note she sent (one for every day I was in Houston) and every phone call, skype and blog comment all with the best advice and tons of love. I love you, Nan.
*I am grateful for my In-Laws, that we share such a wonderful relationship. You are a blessing to us and everyone you meet and you raised a fine young man that I am proud to call 'husband'. I love you and Happy Anniversary.
*I am grateful for my Aunts, Uncles and Cousins (from both sides), for coming to see me in Houston, writing endless cards and letters, commenting on here, ringing me on skype and calling to give love and support. For being positive, loving and generous, always. Oh, and reminding me that I 'don't have to wear that wig around us'! I love all of you.
*I am grateful for the community of teachers, parents and administration with whom I work. You were endlessly supportive and enormously generous with your time, effort and caring last year. You welcomed me back to my classroom with huge smiles which melted away the anxiety and a big ol' chocolate cake to sweeten the deal even more. Thank you
*I am grateful for my students. Your cards, drawings, songs and photographs (of which I've kept every single one for nearly three years- come see me when you're all grown up and I will show you how much you meant) carried me through and your bright smiles welcomed me back. Your love and kindness has taught me more about how to be human than you'll ever know. Thank you, I am thrilled and honored to call myself your teacher again this year.
*I am grateful for my overwhelmingly wonderful friends, especially the ones who have been part of my life for a long time. Your steadfast caring and love taught me so much, I hope to be as good a friend to you as you have been for me. For the benefits, the cards, the visits, the days walking around the mall because that was all we could do, the text messages, for everything. Thank you and I love you.
*I am grateful for new friends who became like old friends so quickly. In the face of your own struggle, you reached out. Watching you heal and flourish and fight and WIN has been humbling and an inspiration. I hope to pay back the love and support to you tenfold. I love you and your families.
*I am grateful for those who fell away over the last few years. You taught me patience and forgiveness. You taught me how to be a better friend and give more of myself in your absence. Thank you
*I am grateful to have known too many sweet friends who are now resting with angels. Craig, Sarah H., Olivia, Montreal: your beautiful lives set an example for what is truly important. Love and family. Thank you for sharing a small piece of your lives with me, I miss you.
*I am grateful for the nurses who helped heal me, both at MD Anderson and at UPenn. You save lives and you do it with compassion. You take care of our bodies and our hearts, sitting by the bedside listening, coming in with a funny story, lingering for a moment or two when you see we're lonely. Thank you for what you do and who you are
*I am grateful for my doctors and nurse practitioners, both northern and southern. Your dedication to healing and to making a difference shows. You are compassionate and witty- not something many in medicine can claim. Thank you for your hard work and vast knowledge.
*I am grateful for the scientists, researchers, pharmacists, nursing assistants, interns and secretaries who keep the whole juggernaut moving and bring about the changes that save lives. You are often forgotten but immensely important pieces of the puzzle. Thank you for saving my life.
*I am grateful for First Descents and the volunteers, counselors, donors, staff, board members, chefs, guides...the list goes on...who dedicate their time and hearts to this organization. You do an indescribably important thing. Thank you for teaching me how to live again, giving me a place to belong and opening up an enormous world of possibility and adventure I didn't know I was missing. Thank you, thank you, thank you.
*I am grateful for my FD family from Camp BAMF. In a few short days you became closer friends than some I have known for years. You came with your hearts open and smiles wide and I am so honored to have shared that experience with you. You shattered the illusion of the broken cancer patient and soared sky high, cheering everyone else on along the way. You are stunning and, as I said, AWEsome. Thank you and I love you
*I am grateful for the practice of yoga, that it was there when I needed it most and stayed there and gave me the tools to get through the rough times and rejoice in the good times. For giving me my body back and allowing me to love it again. It truly was the cushion to fall back on, reminding me to breathe and lead from the heart.
* I am grateful for the generations of yogis who came before me who learned and shared their wisdom. For the teachings of old and new, the principles that guide and the traditions that sooth and heal. For reminding me that the learning is never finished, there is always more.
*I am grateful for my teachers. You share you wisdom and open your heart. You are passionate about what you do, and it shows. To my yoga teachers, thank you for your generosity, your encouragement, your warmth and your perseverance. To my harmonium teacher, of which I also thank my yoga teacher, you brought the music back out of me and opened a new world of sound that will hopefully take many lifetimes to explore. To my dance teacher, you helped me unlock my body again. Taught me to feel like a woman and move in a joyful way. Thank you. I am humbled to be your student.
*I am grateful for the sun which warms me, the grass that supports my practice or a nap, the sky that is always promising even if I can only see it through the window, the forest and mountains that call to me and were the place where the real healing started, for the ocean which sooths, the air that sustains me, the rain which washes everything clean. This is a wondrous world and I and grateful to have more time to explore it.
*I am grateful for the small moments. Moments of unexpected but memorable happiness. People can be so good to one another, if given the chance.
*I am grateful for those of you reading this. I grateful for your time and for your kind comments which often move me to tears. You gave me the opportunity to share this journey and learn about myself in the process. This is priceless. Thank you.
*I am grateful for this body. The way it can move, support, heal, change. That it is perfect in its imperfections and I love it. I promise to take care of you, body, because you have taken care of me.
*I am grateful for this beautiful, beautiful life. That I get to live it, breathe the air, dream, explore and love and experience enough to be grateful for is amazing.
*I am grateful for my Donor. For the sacrifice you made so that I may live this beautiful life. I think of you every day and pray that you are also living a beautiful life, for you deserve at least what you gave. Thank you, from the bottom of my heart.
Much, grateful, humble love, friends.
My writing has been sparse as of late, I'll explain in another post but know that everything is wonderful. I hope you are too.
Saturday, September 3, 2011
Awake My Soul
Every so often a song comes along that I love so much and speaks to me so deeply it is nearly embarrassing. This week has been, for want of a better word, intense. For now, while I catch up on much needed rest, join me in loving all over Mumford & Sons.
Saturday, August 27, 2011
A First Re-Birthday
It seems appropriate to me to begin this post like this:
Dear Donor,
I don't know the kind of things about you that most people think define a person. Those first-date-basics bits of information like favorite book, where you grew up, what you do for a living, if you prefer cats or dogs (though I have a suspicion that you like both). What I know about you, however, is something that many people will never have the divine opportunity to learn about another person. The thing I know about you is something that can only be found in the most special sort of person and can only be found out by a small group of people in a very extreme situation. It is hidden, illusive, maybe not present at all in some. That thing is the ability to save a life.
You, dear donor, saved my life one year ago today. In fact, you have saved my life every day, for the last 365 days and for every day for the rest of this life that this humble heart beats. You said "Yes", first in sending in your swab to the National Bone Marrow Donor Registry, and then again when they called you and said you were a match. You said "Yes" when you got out of bed on this morning one year ago, made your way to the hospital, signed those consent forms and started anesthesia. You said "Yes" in a situation where many have said "No, thank you". This small word has made a world of difference. You have selflessly, thanklessly (for now) given hope, faith and love to a depth which cannot be described in words.
Your gift of life has given me another year on this beautiful earth, a gift that is nothing miraculous, glittering and awe-inspiring. You gave a gift of another year of loving marriage, of joyful friendship and of wonder at the miracle of this life. The things that your life-force has allowed me to experience in these last 365 days are nothing short of stunning. You have been with me in every moment in every breath. You are in my veins and so is my gratitude for your sacrifice.
To your parents, who raised a man who would give such a gift, I say thank you. To your friends and family, who stood with you in this choice, thank you. To whomever it was that inspired you to join the registry, thank you. So strange that such small words: "yes" and "thank you" can hold so much weight. I look forward to the moment when I can look into your face and say with all my soul, "Thank you". Maybe a small fraction of my passionate gratitude will show.
It is my prayer tonight, as it has been every night since transplant, that you are safe, happy, loved, healthy, surrounded by smiling faces and living a life that you love and fulfills you. I pray that you have had joy this last year, for you gave that to me. I pray that you will somehow know, through the universe, that the woman that you saved loves you.
Thank you, dear donor. Dear 36 year-old-male donor. When I asked my medical team one year ago where you are from, they told me that you are a resident of earth. It seems certain to me that you are bound to be a resident of heaven as well.
Love,
A very humble recipient
Deciding what to do to mark this day has been difficult, I am thankful, in fact, that Mother Nature made the choice for me to stay in. Celebrating seemed...inappropriate. I didn't do anything to deserve a celebration. My donor? My husband? My family? My friends? My community? My medical team? You, those reading this? THOSE are the ones deserving of a celebration.
Giving love and support is deserving of celebration, not laying in a hospital bed and following doctor's orders. Tonight, with tears streaming as they have been all day (and most of the week), I toast to my donor, husband, family, friends, community, doctors, nurses, pharmacists, medical professionals. Without them (you), I wouldn't be writing this. I owe my life to you. There are a thousand other words that I could write here about the deep emotions that are welling in me but I will leave it at this:
Thank you. Humblest, deepest, most radiant thanks. This year has been one of wonder. May you be safe and loved and know that you have made an enormous impact on this life.
Much love. Always
Dear Donor,
I don't know the kind of things about you that most people think define a person. Those first-date-basics bits of information like favorite book, where you grew up, what you do for a living, if you prefer cats or dogs (though I have a suspicion that you like both). What I know about you, however, is something that many people will never have the divine opportunity to learn about another person. The thing I know about you is something that can only be found in the most special sort of person and can only be found out by a small group of people in a very extreme situation. It is hidden, illusive, maybe not present at all in some. That thing is the ability to save a life.
You, dear donor, saved my life one year ago today. In fact, you have saved my life every day, for the last 365 days and for every day for the rest of this life that this humble heart beats. You said "Yes", first in sending in your swab to the National Bone Marrow Donor Registry, and then again when they called you and said you were a match. You said "Yes" when you got out of bed on this morning one year ago, made your way to the hospital, signed those consent forms and started anesthesia. You said "Yes" in a situation where many have said "No, thank you". This small word has made a world of difference. You have selflessly, thanklessly (for now) given hope, faith and love to a depth which cannot be described in words.
Your gift of life has given me another year on this beautiful earth, a gift that is nothing miraculous, glittering and awe-inspiring. You gave a gift of another year of loving marriage, of joyful friendship and of wonder at the miracle of this life. The things that your life-force has allowed me to experience in these last 365 days are nothing short of stunning. You have been with me in every moment in every breath. You are in my veins and so is my gratitude for your sacrifice.
To your parents, who raised a man who would give such a gift, I say thank you. To your friends and family, who stood with you in this choice, thank you. To whomever it was that inspired you to join the registry, thank you. So strange that such small words: "yes" and "thank you" can hold so much weight. I look forward to the moment when I can look into your face and say with all my soul, "Thank you". Maybe a small fraction of my passionate gratitude will show.
It is my prayer tonight, as it has been every night since transplant, that you are safe, happy, loved, healthy, surrounded by smiling faces and living a life that you love and fulfills you. I pray that you have had joy this last year, for you gave that to me. I pray that you will somehow know, through the universe, that the woman that you saved loves you.
Thank you, dear donor. Dear 36 year-old-male donor. When I asked my medical team one year ago where you are from, they told me that you are a resident of earth. It seems certain to me that you are bound to be a resident of heaven as well.
Love,
A very humble recipient
Deciding what to do to mark this day has been difficult, I am thankful, in fact, that Mother Nature made the choice for me to stay in. Celebrating seemed...inappropriate. I didn't do anything to deserve a celebration. My donor? My husband? My family? My friends? My community? My medical team? You, those reading this? THOSE are the ones deserving of a celebration.
Giving love and support is deserving of celebration, not laying in a hospital bed and following doctor's orders. Tonight, with tears streaming as they have been all day (and most of the week), I toast to my donor, husband, family, friends, community, doctors, nurses, pharmacists, medical professionals. Without them (you), I wouldn't be writing this. I owe my life to you. There are a thousand other words that I could write here about the deep emotions that are welling in me but I will leave it at this:
Thank you. Humblest, deepest, most radiant thanks. This year has been one of wonder. May you be safe and loved and know that you have made an enormous impact on this life.
Much love. Always
Tuesday, August 23, 2011
When the Earth is A-Rockin'...
I don't notice a thing.
Fun fact: When you spend nearly a year with tremors and shakes from your meds, you don't notice earthquakes. Who knew?
The cats are pretty freaked out though...if I can coax one out and snap a picture of their puff, you KNOW I'll post it.
Fun fact: When you spend nearly a year with tremors and shakes from your meds, you don't notice earthquakes. Who knew?
The cats are pretty freaked out though...if I can coax one out and snap a picture of their puff, you KNOW I'll post it.
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