What a wonderful, uneventful, music and laughter-filled day.
This day was a blessing in so many ways. The simplicity and joy of waking up and feeling really good was...well..really good. The ecstatic joy in drinking (and stomaching) my first cup of coffee in a week was BLISSFUL. These are the feelings and moments I will never take for granted as long as I live.
Though sleeping last night was difficult (for some, P in particular) due to beeping machines- seriously, this pump is a life-saver and the biggest pain in the ass EVER- P and I both awoke this morning happy and alert. A good part of today was spent responding to as many messages and texts as possible, I want to ask though to please forgive me if you have contacted me and I have not been able to respond. Please know that I have received your message or text or call and it has been cherished and that I want to respond to everyone, and will, it may just take some time:). Thank you for your love and support, it is immeasurably fortifying. Thank you also for your words about my post yesterday, you all hold so much wisdom.
As I have said often on here, though it can never be said often enough, there are a great number of wonderful things about this place. The availability of Music Therapy is definitely on the tippy top of that list (ya know, besides the whole, they're-saving-my-life thing). Today Michael, the ever gentle Music Therapist, paid me a visit and came bearing gifts: a huge Fake Book to add to the collection that Dad brought down and a great keyboard (with a music stand!). Let me just tell you, Michael made my friggin' day. He dropped these things off and I sat up for an hour or so, sang, played and tinkered until he came back. When he returned we worked for sometime on a technique to program a playlist to bring me from my anxious moments into relaxation and from sadness into happiness. He is phenomenal at what he does and I am so thankful to have access to this service.
There is a line that comes to mind here that some who read this blog will know (I am paraphrasing for obvious reasons, or at least obvious reasons to those in-the-know): "It is in those moments of immense quiet, solace and abnegation that music speaks". Sigh. Aside from my yoga mat, a sheet of music has always been my greatest therapist. An serviceiPod and some singable tunes come in close second. And then maybe a vodka tonic. Ummm, yep, in that order and maybe all at the same time.
Spending this afternoon playing and singing made my heart soar and I swear to you made those little cells wiggle their way closer to home. Well, at least that what I've decided. There are a few things that I have 'decided', because apparently I'm a control freak (yeah, go ahead and laugh. This is newer information to me than I care to admit. Again.). Some of those decisions are long term and unrelated to this shitshow and others have to do with my length of stay here and outcome. Being a touch superstitious I will not post any of them, though I'm sure you can probably divine what most of those shitshow-related ones are.
Mom hung out for a few hours today and we had some good-old-fashioned laughs at the expense of the Emmy fashion from last night. Trashy TV is food for the soul, that's all I know. The Emmys, Jersey Shore, Wanda Williams, COPS- you name the trash, I'm watchin' it. Well, don't get me wrong here, I'm not parked on my ass all day watching TV (duh, I just waxed poetic about music and vodka...and I walked for over an hour today to get the blood a-pumpin'), but in those minutes and hours when I need to turn my brain off, and a book is too hard to concentrate on, TV effing rocks.
P left early tonight so he could go home and get some grub with Mom and then get up to work remotely in the morning, so I'm enjoying a touch of alone time with my iPod and this blog. Talking to family at home was another wonderful part of today, so a shout out to the fam for bringing a HUGE smile. Love you:)
Having this outlet to share, though not everything, has been incredible. Having dear friends, family and others who read, comment, reach out, uplift and inspire is priceless. As always, thank you for walking with me on this journey and thank you for your prayers/intention/good juju. That shit works.
Much quiet, peaceful, musical love:)
Monday, August 30, 2010
Sunday, August 29, 2010
A Torch Passed
I write this post with a heavy heart tonight.
Craig Brandmeier, the young man featured on MTV's True Life: I Need a Transplant, passed away yesterday.
Craig was a young man of only 26 years, a young man of great strength of mind and spirit and of great inspiration to many, myself included. Craig fought valiantly, relentlessly as he would say, against this end. He publicly shared his battle and was a strong supporter and promoter of Be the Match. There are undoubtedly many patients out there who will receive donor cells due to the drives that Craig and his family and friends put together, as well as thanks to those who were inspired to join the registry when hearing his story. His episode of True Life aired only weeks after the news of my own required transplant came. It was both impossible to watch and hugely healing to my heart. I will be selfish here and say that he represented hope and strength in a package that I couldn't find elsewhere. Though our diseases were different, our lives were very similar, and that was hard to ignore. Craig often broadcasted live, both in his home and the hospital, on justin.tv and I had the pleasure of interacting with him there. He allowed me to ask questions and offered frank answers. He was funny, frank and raw with his emotions in a way that few could muster.
Craig, if I may address you through the universe for a moment, thank you for your gifts. Thank you for sharing your story and your spirit and your purpose. You did more on this earth in your 26 years than many ever will. You provided comfort and inspiration. These words to you seem so hollow, but they are all that I have to offer someone who gave so much. You held the torch high, that many may see that donors are badly needed. Though I will spend the rest of my life carrying this torch as well, for my own obvious reasons, I will do so now for you also. Thank you, Craig. May you rest in peaceful comfort and your wife and family find solace in these days.
Please visit www.marrow.org to become a donor. For me, for my family, for the Brandmeiers.
Craig Brandmeier, the young man featured on MTV's True Life: I Need a Transplant, passed away yesterday.
Craig was a young man of only 26 years, a young man of great strength of mind and spirit and of great inspiration to many, myself included. Craig fought valiantly, relentlessly as he would say, against this end. He publicly shared his battle and was a strong supporter and promoter of Be the Match. There are undoubtedly many patients out there who will receive donor cells due to the drives that Craig and his family and friends put together, as well as thanks to those who were inspired to join the registry when hearing his story. His episode of True Life aired only weeks after the news of my own required transplant came. It was both impossible to watch and hugely healing to my heart. I will be selfish here and say that he represented hope and strength in a package that I couldn't find elsewhere. Though our diseases were different, our lives were very similar, and that was hard to ignore. Craig often broadcasted live, both in his home and the hospital, on justin.tv and I had the pleasure of interacting with him there. He allowed me to ask questions and offered frank answers. He was funny, frank and raw with his emotions in a way that few could muster.
Craig, if I may address you through the universe for a moment, thank you for your gifts. Thank you for sharing your story and your spirit and your purpose. You did more on this earth in your 26 years than many ever will. You provided comfort and inspiration. These words to you seem so hollow, but they are all that I have to offer someone who gave so much. You held the torch high, that many may see that donors are badly needed. Though I will spend the rest of my life carrying this torch as well, for my own obvious reasons, I will do so now for you also. Thank you, Craig. May you rest in peaceful comfort and your wife and family find solace in these days.
Please visit www.marrow.org to become a donor. For me, for my family, for the Brandmeiers.
Day 1 (or 99 bottles of beer on the wall)
And here is where it becomes difficult.
Yeah, funny, I know. As if chemo and ATG and months of waiting weren't hard, right? Well, nothing prepares you for the ultimate morning-after experience. After a night of interrupted sleep (totally fair if you ask me, it was all for important reasons- though the debacle of the syringe of heparin hanging off of my chest for an hour may be debatable...), I awoke this morning to a swirling maelstrom of emotions. Relief that the night went so darn smoothly, hunger (honesty here people, I didn't eat well last night), panic, fear, loneliness, anxiety and joy. This morning was the morning of breath.
At one point, early this morning before P even stirred, I had myself so worked up with the "what-ifs" and "omg-eds" that my Tacrolimus line (slow moving transfusion of a thick liquid medication meant to help stop rejection) began to back up with blood. Obviously this made me panic further, which didn't help things much, and buzzed the angelnurse mercilessly until she came in and told me that I had to make my heart stop beating so fast. OH. Uh, sorry :/. IN. OUT (goddammit). IN. OUT. in. out. in. out. in. out. in. oooouuuuuttt. OK. Chill yourself girl.
This shit is fucking scary. As in, I feel the presence of my donor, feel his prana, life force, the force the spiritual strength that surrounded last night. But I also feel the crippling fear of a time-bomb ticking in me. This was one of the most terrifying mornings I have ever had, this I will be honest about. After a few hours of trying desperately to focus on my inner quiet, inner strength and all of my practice, my fidgety ass gave up and asked for Ativan. You know, sometimes, even though you have all of those strong building blocks to guide you, those things you have practiced with dedication, you have to pull the emergency cord and take a friggin' pill. And go to BINGO. How's that for a change, eh? Saturdays used to be coffee and yoga and now they're pills and BINGO. Apparently I'm 80 (I hope to have this routine at 80). Well, actually, as I was readying myself for the hike to the PediDome (giant sunny room filled with bright colors) Dr. Lee appeared to check up and geek out about Jazz (did I mention that he was a jazz major in college and loves playing the trombone? um, HELLO! OBVSLY he's kickass). He talked about Pat Metheny and Spyro Gyra and what his transplant tunes would be (mine were Puccini, did you hear;) ). Love it.
SO, yep, I pulled my bald butt out of my sadsack bed, took a damn shower (seriously, I need to post about what a hoot it is to shower with a CVC...saran wrap abounds), and went to BINGO. Oh, and won a round or two. And there were prizes. Sweet:) I've mentioned this a billion times on here, but there is something very special about this place. There are group of grey-vested volunteers who put together activities for the teens and young adults on the weekends and often pop into your room to say hello. Most are my age (which is a little weird) and some are a bit older, all are delightful. One of those volunteers, Brittany, stuck her head into my room last weekend to say hello and joyfully pulled up a chair to sit with me today as well. As it turns out, and Brittany was bursting to tell me, she grew up in Swarthmore and still visits the Philadelphia area yearly, though now she and her Dallas-native husband live here. Both of her parents are natives of Norristown and still has some family "back east" (love this saying). Talking to her about stupid things like how we said the word 'crayons' as kids and how she was made fun of for this when she moved here. We talked about the fall colors and the smell of snow, you know you know this saying "I can smell snow". She even caught me by surprise when she said that she had heard the district I teach in is quite good (and it is). So refreshing. Seriously, thank you Brittany. You and your big heart made my afternoon. Thank you for sitting with this train wreck and gabbing about stupid nostalgia. It was the breath I needed today.
Not gonna lie, I was wiped OUT after BINGO (yep, 80) and retired to my luxury suit for the afternoon with my parents to facebook stalk, watch Phenomenon and Jersey Shore and finally pass out. Somewhere around 8, Dr Wernner (another attending) popped in to chat( I love this chatty doctor thing) and veritably scared the shit out of me about mucositis (READ: big angry mouth sores) and talked about her high school love of the french horn. It is SO FREAKING COOL that most of these doctors are fellow music nerds. Now to find some yoga nerds....:) But honestly, mucositis is scary and painful and I am very very very afraid of it. Not gonna lie here. Though I promise not to post the gory details if it does happen WHICH IT WON'T.
P is staying the night again, like the knight in shining armor that he is (he's even wearing gloves and a mask, though they told him he didn't have to). Boy is gonna get breakfast in bed for months for this one. It's like being in a freak world summer camp. But there are no roasted marshmallows.
facebook posts made me smile wide. Thank you for allowing me to share this journey with you, dear friends.
Much love!
Yeah, funny, I know. As if chemo and ATG and months of waiting weren't hard, right? Well, nothing prepares you for the ultimate morning-after experience. After a night of interrupted sleep (totally fair if you ask me, it was all for important reasons- though the debacle of the syringe of heparin hanging off of my chest for an hour may be debatable...), I awoke this morning to a swirling maelstrom of emotions. Relief that the night went so darn smoothly, hunger (honesty here people, I didn't eat well last night), panic, fear, loneliness, anxiety and joy. This morning was the morning of breath.
At one point, early this morning before P even stirred, I had myself so worked up with the "what-ifs" and "omg-eds" that my Tacrolimus line (slow moving transfusion of a thick liquid medication meant to help stop rejection) began to back up with blood. Obviously this made me panic further, which didn't help things much, and buzzed the angelnurse mercilessly until she came in and told me that I had to make my heart stop beating so fast. OH. Uh, sorry :/. IN. OUT (goddammit). IN. OUT. in. out. in. out. in. out. in. oooouuuuuttt. OK. Chill yourself girl.
This shit is fucking scary. As in, I feel the presence of my donor, feel his prana, life force, the force the spiritual strength that surrounded last night. But I also feel the crippling fear of a time-bomb ticking in me. This was one of the most terrifying mornings I have ever had, this I will be honest about. After a few hours of trying desperately to focus on my inner quiet, inner strength and all of my practice, my fidgety ass gave up and asked for Ativan. You know, sometimes, even though you have all of those strong building blocks to guide you, those things you have practiced with dedication, you have to pull the emergency cord and take a friggin' pill. And go to BINGO. How's that for a change, eh? Saturdays used to be coffee and yoga and now they're pills and BINGO. Apparently I'm 80 (I hope to have this routine at 80). Well, actually, as I was readying myself for the hike to the PediDome (giant sunny room filled with bright colors) Dr. Lee appeared to check up and geek out about Jazz (did I mention that he was a jazz major in college and loves playing the trombone? um, HELLO! OBVSLY he's kickass). He talked about Pat Metheny and Spyro Gyra and what his transplant tunes would be (mine were Puccini, did you hear;) ). Love it.
SO, yep, I pulled my bald butt out of my sadsack bed, took a damn shower (seriously, I need to post about what a hoot it is to shower with a CVC...saran wrap abounds), and went to BINGO. Oh, and won a round or two. And there were prizes. Sweet:) I've mentioned this a billion times on here, but there is something very special about this place. There are group of grey-vested volunteers who put together activities for the teens and young adults on the weekends and often pop into your room to say hello. Most are my age (which is a little weird) and some are a bit older, all are delightful. One of those volunteers, Brittany, stuck her head into my room last weekend to say hello and joyfully pulled up a chair to sit with me today as well. As it turns out, and Brittany was bursting to tell me, she grew up in Swarthmore and still visits the Philadelphia area yearly, though now she and her Dallas-native husband live here. Both of her parents are natives of Norristown and still has some family "back east" (love this saying). Talking to her about stupid things like how we said the word 'crayons' as kids and how she was made fun of for this when she moved here. We talked about the fall colors and the smell of snow, you know you know this saying "I can smell snow". She even caught me by surprise when she said that she had heard the district I teach in is quite good (and it is). So refreshing. Seriously, thank you Brittany. You and your big heart made my afternoon. Thank you for sitting with this train wreck and gabbing about stupid nostalgia. It was the breath I needed today.
Not gonna lie, I was wiped OUT after BINGO (yep, 80) and retired to my luxury suit for the afternoon with my parents to facebook stalk, watch Phenomenon and Jersey Shore and finally pass out. Somewhere around 8, Dr Wernner (another attending) popped in to chat( I love this chatty doctor thing) and veritably scared the shit out of me about mucositis (READ: big angry mouth sores) and talked about her high school love of the french horn. It is SO FREAKING COOL that most of these doctors are fellow music nerds. Now to find some yoga nerds....:) But honestly, mucositis is scary and painful and I am very very very afraid of it. Not gonna lie here. Though I promise not to post the gory details if it does happen WHICH IT WON'T.
P is staying the night again, like the knight in shining armor that he is (he's even wearing gloves and a mask, though they told him he didn't have to). Boy is gonna get breakfast in bed for months for this one. It's like being in a freak world summer camp. But there are no roasted marshmallows.
facebook posts made me smile wide. Thank you for allowing me to share this journey with you, dear friends.
Much love!
Saturday, August 28, 2010
Transplant Day: Filling these Hollow Bones
Here it is. This is the first few moments of the transplant infusion which began at 10:30pm central time and finished at 2:30 am central time. To my dear, generous, beloved friends at DYML, thank you from the bottom of my heart. Seeing those pictures and feeling your energy certainly helped those little cells find a home swiftly in my hollowed bones and filled my heart with love and humbly appreciation of your many gifts. Thank you dear friends and family and readers. My I be able to one day repay your love and generosity. Much love:)
Friday, August 27, 2010
Dear Donor
Dear Donor,
I don't know the kind of things about you that most people think define a person. Those first-date-basics pieces of information: favorite food, 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 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. It is hidden, illusive, maybe not present at all in some. That thing is the ability to save.
You have saved me and given me a new life. You said "Yes", first in joining the registry, and then again that wonderful day when they called you and said you were a match. You have given hope, faith and love. You are selfless beyond selfless. There are hardly more words to describe what you are and what you have given.
Thanks to your selfless gift, you have given me many more happy years in my very young marriage. You have given many more years of joyful teaching and music making. You have given me the opportunity to have children of my own someday, and maybe even grandchildren. You have given me thankfulness and deep gratitude and faith in human nature.
Thank you, dear donor. Dear 35 year old male donor. When I asked where you are from, they told me that you are a resident of earth. I think you are certainly bound to be a resident of heaven as well.
Love and gratitude,
Laura
I don't know the kind of things about you that most people think define a person. Those first-date-basics pieces of information: favorite food, 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 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. It is hidden, illusive, maybe not present at all in some. That thing is the ability to save.
You have saved me and given me a new life. You said "Yes", first in joining the registry, and then again that wonderful day when they called you and said you were a match. You have given hope, faith and love. You are selfless beyond selfless. There are hardly more words to describe what you are and what you have given.
Thanks to your selfless gift, you have given me many more happy years in my very young marriage. You have given many more years of joyful teaching and music making. You have given me the opportunity to have children of my own someday, and maybe even grandchildren. You have given me thankfulness and deep gratitude and faith in human nature.
Thank you, dear donor. Dear 35 year old male donor. When I asked where you are from, they told me that you are a resident of earth. I think you are certainly bound to be a resident of heaven as well.
Love and gratitude,
Laura
Transplant Day: The Waiting
So...months of waiting and anticipation and I awoke this morning and felt....well, anxious...but really really good. The hardest part about today won't be the side effects, though there are some. The hardest part about today is the anxiety of waiting. (Ativan is a wonder drug, FYI)
There are so many things to be said and felt right now that there hardly seem to be enough words or time to say and feel them. My mind goes to my donor who, as I type, is undergoing the collection procedure. Yes, it will be painful for him. My god, I've had four bone marrow biopsies and those are nothing compared to what he is feeling (um, one hundred holes in his pelvis, fifty on each side, someone give that guy an ice cold beer when he wakes up!). This man does not know me. He has never met me (though he will one day). He knows nothing about me other than my age and sex. He got a phone call one day and said "Yes." Radical. Acceptance. All. The. Way. This man has saved my life. What do you say to that? Thanks doesn't cut it, it just doesn't. Seriously, it's almost hard to wrap my mind around it without having a panic attack about how I'm supposed to feel. The doctors say that it's very anticlimactic, they're right of course, but for me it's like a rumbling in the distance. I reminded my doctor this morning that it may be anticlimactic for the them, the care team, no heroic surgery just an IV drip, but for me, the patient, it's life changing. It's huge. Just an IV drip that saves my life and changes things forever. It represents so much. Freedom. Health. Wellness. A future. How is this anticlimactic? Deep down I think they know it's a big deal, but understand how anxious the patient is. It's hard to tell what the next few days, weeks and months will feel like. If you ask me (and duh, why wouldn't you), I'm going to be fine.
The care here is phenominal, that much I am sure. All along the way this week there have been people in and out of my room with things to offer. Young adult group, music therapy, fresh baked chocolate cookies (though I couldn't stomach it, the gesture was fabulous), a chaplain offing to bless my cells (Yes please!), nutritionist...you name it, they came in. It's wonderful, honestly it is. You feel well cared for and watched closely. Comforted when you need it and (maybe not) left alone when you need it. I want you all to know that on the wall, opposite from my bed, I have all of your cards hung. Your love surrounds and protects and I am SO GRATEFUL for it. My heart is full.
For now, I'm taking Ativan (I feel like I'm going to jump out of my skin with anticipation!) and trying to pass the time by writing to my donor and walking a bit. They just came in as I was typing to say that the cells won't get here until later this evening and will probably start the infusion around 8 or 9. Ah, well, a good night's sleep to be had I believe. Dad flew in last night and came by this morning to say hello. Thanks Dad:)
Will post as soon as the cells get here! Thank you for the texts and facebook posts. I can feel you here with me:)
Much love!
There are so many things to be said and felt right now that there hardly seem to be enough words or time to say and feel them. My mind goes to my donor who, as I type, is undergoing the collection procedure. Yes, it will be painful for him. My god, I've had four bone marrow biopsies and those are nothing compared to what he is feeling (um, one hundred holes in his pelvis, fifty on each side, someone give that guy an ice cold beer when he wakes up!). This man does not know me. He has never met me (though he will one day). He knows nothing about me other than my age and sex. He got a phone call one day and said "Yes." Radical. Acceptance. All. The. Way. This man has saved my life. What do you say to that? Thanks doesn't cut it, it just doesn't. Seriously, it's almost hard to wrap my mind around it without having a panic attack about how I'm supposed to feel. The doctors say that it's very anticlimactic, they're right of course, but for me it's like a rumbling in the distance. I reminded my doctor this morning that it may be anticlimactic for the them, the care team, no heroic surgery just an IV drip, but for me, the patient, it's life changing. It's huge. Just an IV drip that saves my life and changes things forever. It represents so much. Freedom. Health. Wellness. A future. How is this anticlimactic? Deep down I think they know it's a big deal, but understand how anxious the patient is. It's hard to tell what the next few days, weeks and months will feel like. If you ask me (and duh, why wouldn't you), I'm going to be fine.
The care here is phenominal, that much I am sure. All along the way this week there have been people in and out of my room with things to offer. Young adult group, music therapy, fresh baked chocolate cookies (though I couldn't stomach it, the gesture was fabulous), a chaplain offing to bless my cells (Yes please!), nutritionist...you name it, they came in. It's wonderful, honestly it is. You feel well cared for and watched closely. Comforted when you need it and (maybe not) left alone when you need it. I want you all to know that on the wall, opposite from my bed, I have all of your cards hung. Your love surrounds and protects and I am SO GRATEFUL for it. My heart is full.
For now, I'm taking Ativan (I feel like I'm going to jump out of my skin with anticipation!) and trying to pass the time by writing to my donor and walking a bit. They just came in as I was typing to say that the cells won't get here until later this evening and will probably start the infusion around 8 or 9. Ah, well, a good night's sleep to be had I believe. Dad flew in last night and came by this morning to say hello. Thanks Dad:)
Will post as soon as the cells get here! Thank you for the texts and facebook posts. I can feel you here with me:)
Much love!
ATG Day 3 (Day -1)
Yesterday (ATG Day 3) I slept. And had my room cleaned. And then I slept. The end:)
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