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:)
Thursday, August 26, 2010
ATG Day 2
So I posted about this a little earlier, but didn't go into much detail because I was afraid I was bugging the other folks in the teen room on computers. Now the interwebs are up and (slowly, beggars can't be choosers!) running.
Yes, yesterday sucked nuts. You know what? Today didn't. In fact, today was pretty awesome. And I don't remember much of yesterday other than being sleepy and very sick, so for that I am thankful. Honestly, The illness from Gleevec was much worse than my rainbow yawns yesterday and the flu like feeling was no worse than a bad flu that any person could get. Gleevec for me? Think hours curled up around the porcelain throne singin' until the sun comes up, sick. Every night. Tasigna? All of my muscles seized and I had a full body rash that looked mighty gross and felt like I just wanted to rip my skin off. And those effects went on for days and months at a time. Look, I'm not trying to sugar coat chemo. It fucking blows and it's different for everyone and every disease. What I'm saying is that I'm keeping this in perspective. There are better, and probably worse days ahead. But IN THIS MOMENT things are good. Yeah, I was annoyed that the physical therapist pulled me out of bed, drunk as a skunk on Dilatin, to walk timed laps, but I felt a hell of a lot better after doing those laps! Yep, it's really bloody annoying not to have fresh fruits or veggies, even just lettuce on a sandwich, but you know what? It's only a few weeks and then I can spend the rest of my life eating just raw food if I want to.
This brings me to the food issues that I've touched on a few times here. Going in to this process, I made a promise to myself that I would stay as active as I could and would refuse to eat only 'junk' food. Well, just like everything else in this world, standards and norms change and we must adjust to the new reality. Active for me before this week was four or five yoga classes a week, walking where ever I needed to go and eating a very healthy diet of local produce, clean foods and as much ruffage as my gut could take. Now? Active is a few laps around the floor and healthy eating is remember that I need protein today or to try all of the cooked vegetables on the menu until I find one that doesn't repulse me (answer: Green Peas!) . That yesterday, the only thing I ate ended up in a bin next to the bed so I need more calories today. Cheese raviolie with BOTH cream sauce and marinara is a good choice (you know, these food service peeps know what they're up to when they design the menus). And anyway, I learned my lesson on Saturday when I tried to order a real-world healthy meal (grilled chicken with "glaze", brown rice, sauteed spinach and diet sprite) and could only choke down three bites because it was so foul. The grilled cheese? Protein, carbs, calories and a touch of comfort. And cheese. Gooey comforting salty cheese. Yum. This is not my forever diet, just like this is not my forever body. This is just the fuel that this body needs now. It's not super premium, more like diesel. Kind of like the bod right about now.
Another lesson I learned is that the 'bad taste' that many cancer patients report will ruin many foods for you. This is temporary, and you can always find something that works for you, but it's pretty surprising the first time it happens! My remedy? Classic Coke. Settles the tummy and tames the mouth. You just need to be sure to do diligent "oral care" afterwards to keep away the dreaded mouth sore (haven't had one....yet). Seriously, crackers taste like sterile gauze right now and chocolate is so sour I can't handle it. BUT grilled cheese is salty and perfect! Good thing I like grilled cheese.
This afternoon, after actually eating my lunch (I feel like a little kid, YAY I ATE MY LUNCH!!) a y-group was held in the teen and young adult room. This was by no means a cry your eyes out psychotherapy drag-a-thon, but rather a fantastically candid conversation between two peers and two facilitators. The other patient was a young man, just about my age, married with a daughter and with lymphoma. We spoke spoke candidly about what it is to have cancer be a central theme in your marriage from the start. Planning for chidren and health care at our age. Things that only someone in the situation can relate to. Sometimes, an "I'm sorry, I can imagine but I don't understand" isn't comfort enough. This young man seemed so full of hope that his surgery on Friday (we share an important day!) will go well and send him home sans feeding tube to his beautiful little daughter. Please send him your good juju vibes from jesus/buddha/allah/krishna. He's was a cool guy.
Another note about today: ATG plus human body can yeild some pretty fantastically horrible reactions. Full histamine reaction, closing airway, hives, tremors, the whole nine yards. As uncomfortable and sucky as mine was, it was considered a "very good response" especially considering that I had NO REACTION to the damn stuff today. My word, did your good juju thoughts and prayers work people! This morning, while I was pretty well passed out from 50 mg of benedryl and a bag of morphine, two gentleman with guitars came in to serenade me from my cozy curled position. They played and sang (beautifully) a song called "One day at a time" and I was hella impressed my their finger picking skills with protective isolation gloves on. This performance brought so much joy! They probably couldn't tell but I was tapping my toe along with them with a big goofy smile on my face. They left me with a CD, which will definitely go into rotation at work, and left to sing a lullaby to the baby nextdoor. What an amazing place this is. Such big hearts and great resources. My word are P and I grateful.
Looking forward to another smooth day tomorrow and for transplant day to be super awesome too! Much love Philly folks! Miss you and thank you for the love back:)
Yes, yesterday sucked nuts. You know what? Today didn't. In fact, today was pretty awesome. And I don't remember much of yesterday other than being sleepy and very sick, so for that I am thankful. Honestly, The illness from Gleevec was much worse than my rainbow yawns yesterday and the flu like feeling was no worse than a bad flu that any person could get. Gleevec for me? Think hours curled up around the porcelain throne singin' until the sun comes up, sick. Every night. Tasigna? All of my muscles seized and I had a full body rash that looked mighty gross and felt like I just wanted to rip my skin off. And those effects went on for days and months at a time. Look, I'm not trying to sugar coat chemo. It fucking blows and it's different for everyone and every disease. What I'm saying is that I'm keeping this in perspective. There are better, and probably worse days ahead. But IN THIS MOMENT things are good. Yeah, I was annoyed that the physical therapist pulled me out of bed, drunk as a skunk on Dilatin, to walk timed laps, but I felt a hell of a lot better after doing those laps! Yep, it's really bloody annoying not to have fresh fruits or veggies, even just lettuce on a sandwich, but you know what? It's only a few weeks and then I can spend the rest of my life eating just raw food if I want to.
This brings me to the food issues that I've touched on a few times here. Going in to this process, I made a promise to myself that I would stay as active as I could and would refuse to eat only 'junk' food. Well, just like everything else in this world, standards and norms change and we must adjust to the new reality. Active for me before this week was four or five yoga classes a week, walking where ever I needed to go and eating a very healthy diet of local produce, clean foods and as much ruffage as my gut could take. Now? Active is a few laps around the floor and healthy eating is remember that I need protein today or to try all of the cooked vegetables on the menu until I find one that doesn't repulse me (answer: Green Peas!) . That yesterday, the only thing I ate ended up in a bin next to the bed so I need more calories today. Cheese raviolie with BOTH cream sauce and marinara is a good choice (you know, these food service peeps know what they're up to when they design the menus). And anyway, I learned my lesson on Saturday when I tried to order a real-world healthy meal (grilled chicken with "glaze", brown rice, sauteed spinach and diet sprite) and could only choke down three bites because it was so foul. The grilled cheese? Protein, carbs, calories and a touch of comfort. And cheese. Gooey comforting salty cheese. Yum. This is not my forever diet, just like this is not my forever body. This is just the fuel that this body needs now. It's not super premium, more like diesel. Kind of like the bod right about now.
Another lesson I learned is that the 'bad taste' that many cancer patients report will ruin many foods for you. This is temporary, and you can always find something that works for you, but it's pretty surprising the first time it happens! My remedy? Classic Coke. Settles the tummy and tames the mouth. You just need to be sure to do diligent "oral care" afterwards to keep away the dreaded mouth sore (haven't had one....yet). Seriously, crackers taste like sterile gauze right now and chocolate is so sour I can't handle it. BUT grilled cheese is salty and perfect! Good thing I like grilled cheese.
This afternoon, after actually eating my lunch (I feel like a little kid, YAY I ATE MY LUNCH!!) a y-group was held in the teen and young adult room. This was by no means a cry your eyes out psychotherapy drag-a-thon, but rather a fantastically candid conversation between two peers and two facilitators. The other patient was a young man, just about my age, married with a daughter and with lymphoma. We spoke spoke candidly about what it is to have cancer be a central theme in your marriage from the start. Planning for chidren and health care at our age. Things that only someone in the situation can relate to. Sometimes, an "I'm sorry, I can imagine but I don't understand" isn't comfort enough. This young man seemed so full of hope that his surgery on Friday (we share an important day!) will go well and send him home sans feeding tube to his beautiful little daughter. Please send him your good juju vibes from jesus/buddha/allah/krishna. He's was a cool guy.
Another note about today: ATG plus human body can yeild some pretty fantastically horrible reactions. Full histamine reaction, closing airway, hives, tremors, the whole nine yards. As uncomfortable and sucky as mine was, it was considered a "very good response" especially considering that I had NO REACTION to the damn stuff today. My word, did your good juju thoughts and prayers work people! This morning, while I was pretty well passed out from 50 mg of benedryl and a bag of morphine, two gentleman with guitars came in to serenade me from my cozy curled position. They played and sang (beautifully) a song called "One day at a time" and I was hella impressed my their finger picking skills with protective isolation gloves on. This performance brought so much joy! They probably couldn't tell but I was tapping my toe along with them with a big goofy smile on my face. They left me with a CD, which will definitely go into rotation at work, and left to sing a lullaby to the baby nextdoor. What an amazing place this is. Such big hearts and great resources. My word are P and I grateful.
Looking forward to another smooth day tomorrow and for transplant day to be super awesome too! Much love Philly folks! Miss you and thank you for the love back:)
Wednesday, August 25, 2010
Chemopalooza Day 4/ATG day 1 and 2 (day -3 and day -2)
Hey y'all!
Sorry, didn't mean to scare ya. Yesterday (chemo day 4) was a shitty, shitty day. MOstly because ATG sucks monkey cock. Yeah, I said it. In the morning I had four hours of chemo (fludarabine and busulfan) followed by four hours of ATG (devil's brew) with the addition of 15 (yeah, Mom and I counted FIFTEEN) other drugs. One of them was morphine. Fuck yeah. There were about two hours during the middle of the day when I was lucid enough to sit upright and talk to Mom, but then I found myself tossing my cookies for the rest of the night. Hey, reminder: cancer blog. There's no chemo without puking. :) One of the wierdest things about yesterday was that I can't remember a lot of it. SOme one you may have heard, but evidently I make Grey's Anatomy references when hopped up on 50 mg Benedryl + Morphine + Anti-seizure drugs. Sweet./
Story goes like this: Transfusing of ATG started at 10 am, just after chemo and pre-meds to prevent allergic reaction. The doctor's choose THIS TIME to rotate. Yeah, THIS FUCKING TIME. To come in and ask me how I feel. Um, bastards, how do you think I feel? SO. I remember looking up from my bed, where I'm laying looking all cancery, and notice that there are like, seven doctor's standing over me. My transplant doctor starts yamming at me (I don't recall a damn thing he said) and then asks me if I have any questions. In my mind I'm thinking "damn, this looks like those scenes in Grey's Anatomy when the doctors go stand over a patient and start yelling out answers" so my dumb ass looks up and SAYS "Yeah, where's Dr. McDreamy?". They totally got my joke. Which was interesting because after the fact I couldn't figure out if I had actually said it, until P so kindly reminded me that I'm a freak. And then their nervous laughter made sense. The rest of the day was spent slipping in and out of sleep feeling like I had been hit by the worst flu of my life. Oh yeah, and the neuropathy has kicked in. My hands and tongue are all tingly. There was even one point where the ATG was effecting me by making my face TICKLE. Not tingle (duh nurses) but TIKLE. Like I didn't know whether to laugh or scream. Wierd stuff.
You know what? I can deal. I told Mom and P yesterday, and I'll say it again, there have been times in my life when I've been sicker. Next door, there is a four month old baby. Four months. In what universe is that fair? If that baby can do it. If her parents can do this, I can pull on my big girl panties and do this. Motherfucker.
I did take some pics yesterday, I'll post a bit more as soon as the internet is up and running again in my room:) And please don't spoil the Real Housewives Finale facebook friends! Trashy TV is good for the soul.
Thank you all for the comments and e-mails and text messages. It was great to come-to today and see all of them. I felt my heart surge toward Philly:) MIss you all, love you and can't wait to come home!
Much love!
Sorry, didn't mean to scare ya. Yesterday (chemo day 4) was a shitty, shitty day. MOstly because ATG sucks monkey cock. Yeah, I said it. In the morning I had four hours of chemo (fludarabine and busulfan) followed by four hours of ATG (devil's brew) with the addition of 15 (yeah, Mom and I counted FIFTEEN) other drugs. One of them was morphine. Fuck yeah. There were about two hours during the middle of the day when I was lucid enough to sit upright and talk to Mom, but then I found myself tossing my cookies for the rest of the night. Hey, reminder: cancer blog. There's no chemo without puking. :) One of the wierdest things about yesterday was that I can't remember a lot of it. SOme one you may have heard, but evidently I make Grey's Anatomy references when hopped up on 50 mg Benedryl + Morphine + Anti-seizure drugs. Sweet./
Story goes like this: Transfusing of ATG started at 10 am, just after chemo and pre-meds to prevent allergic reaction. The doctor's choose THIS TIME to rotate. Yeah, THIS FUCKING TIME. To come in and ask me how I feel. Um, bastards, how do you think I feel? SO. I remember looking up from my bed, where I'm laying looking all cancery, and notice that there are like, seven doctor's standing over me. My transplant doctor starts yamming at me (I don't recall a damn thing he said) and then asks me if I have any questions. In my mind I'm thinking "damn, this looks like those scenes in Grey's Anatomy when the doctors go stand over a patient and start yelling out answers" so my dumb ass looks up and SAYS "Yeah, where's Dr. McDreamy?". They totally got my joke. Which was interesting because after the fact I couldn't figure out if I had actually said it, until P so kindly reminded me that I'm a freak. And then their nervous laughter made sense. The rest of the day was spent slipping in and out of sleep feeling like I had been hit by the worst flu of my life. Oh yeah, and the neuropathy has kicked in. My hands and tongue are all tingly. There was even one point where the ATG was effecting me by making my face TICKLE. Not tingle (duh nurses) but TIKLE. Like I didn't know whether to laugh or scream. Wierd stuff.
You know what? I can deal. I told Mom and P yesterday, and I'll say it again, there have been times in my life when I've been sicker. Next door, there is a four month old baby. Four months. In what universe is that fair? If that baby can do it. If her parents can do this, I can pull on my big girl panties and do this. Motherfucker.
I did take some pics yesterday, I'll post a bit more as soon as the internet is up and running again in my room:) And please don't spoil the Real Housewives Finale facebook friends! Trashy TV is good for the soul.
Thank you all for the comments and e-mails and text messages. It was great to come-to today and see all of them. I felt my heart surge toward Philly:) MIss you all, love you and can't wait to come home!
Much love!
Monday, August 23, 2010
Chemopalooza Day 3 (or Day -4)
You know that feeling when you've had too much to drink? When you turn your head and then a split second later the room follows? When you stagger a bit and slur? When you look like holy hell? Yeah, that was me this morning thanks to my brand new anti-seizure drug, Dilantin. Only, it was way less fun than when I actually get drunk. Just sayin'.
No, I'm not having seizures, nor do I plan to, it's just that the new chemo they added this morning, Busulfan, can cause them so I was given drugs to prevent it. I'll take this feeling over a seizure, for sure. Check it:
The giant bag in the middle is the Busulfan and the pouches on the side are a few day's worth of Fludarabine. Apparently I took this at 7 am....but don't remember doing so. Talk about a surprise when I looked at my phone around noon!
This morning was one of the rougher mornings I've ever had. Not the worst by far, but rough. Allow me to freak you out: The past two days, my chest has been really congested because of all of the fluid they're giving me to flush my system from the chemo, not a bad thing. This morning though, it felt like I was drowning. As in, I was drifting in and out of sleep and dreaming about drowning. I was in a pool and someone jumped on my head and I was stuck underwater drowning. Not gonna lie, it was kind of scary. OK, really scary. Dr. Lee, my transplant doctor for this floor, gave me lasix and a chest x-ray to be safe and, by lunch (read: 3 o'clock), I felt a bit better. The room still isn't quite moving with me, but that's cool because I can breathe, and we all know that's the most important part. It's a little crazy when you can't quite do the thing you rely on, but, modern medicine is amazing and I am thankful that it is working!
One of the best things about being in a hospital of this caliber is that when something isn't right, or you are feeling a side effect, it is taken care of right away. The other hospital experience I had when I was first diagnosed, remind me to tell you that story, was a lot of begging and waiting for drugs, and not even the fun ones. Here, when I report a side effect or am feeling discomfort, it is addressed within minutes. Man, am I thankful for good insurance. It's a fucking sin that everyone doesn't have access to this kind of health care.
Another great thing about being here is that there are an abundance of research studies and clinical trials to be taken advantage of. Some people aren't cool with these things, too untrustworthy, but I think they're great if they address a need. Today, I was asked to participate in a research study on the effect of exercise on transplant patients. Specifically tracking amount of exercise in a week (20 minutes, three times a week, minimum) on the outcome of transplant. Basically all I have to do is track how much I exercise each week on a chart and have it checked by my doctor or nurse. Mind you, this is not my typical kind of exercise. Walking around the floor a few times counts as exercise, an idea that I scoffed at until today. Man, this shit takes a toll on you! My plan the last few days has been to order my meals and then go walking until it shows up, 30 to 45 minutes later. Today, I made it twice around my pod (little section of ten rooms) in the morning and twice around the floor with Mom in the afternoon before getting too tired to go on. You know what? I'm alright with that. Just getting up and moving counts. OH!! BTW! A great perk of being in this research study is that they put an exercise bike in the corner of my room so I can pedal and watch TV or read a book if I'm too tired to get out and walk. Seriously people, I feel so damn lucky to have access to this kind of care. Here's my bike:)
So cool, right? Apparently they also have a Wii Fit I can use. If i'm having a good day tomorrow, I'm totally taking advantage of THAT.
For tonight though, I'm sitting my the little window in my room, watching a big Gulf storm roll in. It reminds me of home:) The next few days may or may not be the roughest so if I don't update, you'll know why. Tomorrow is the last day of Chemo (WAHOO!) with something called ATG (uh, it's derived from rabbits. weird.) for the next three. ATG can be tough for some people, please send prayers/intention/juju that it's smooth sailing for me. Of course, the big day is Friday.
Before I sign off, there is one person I would like to thank, besides, uh, ALL OF YOU. Thank you Heather, I wore them today and thought of roses.
Much love!
No, I'm not having seizures, nor do I plan to, it's just that the new chemo they added this morning, Busulfan, can cause them so I was given drugs to prevent it. I'll take this feeling over a seizure, for sure. Check it:
This morning was one of the rougher mornings I've ever had. Not the worst by far, but rough. Allow me to freak you out: The past two days, my chest has been really congested because of all of the fluid they're giving me to flush my system from the chemo, not a bad thing. This morning though, it felt like I was drowning. As in, I was drifting in and out of sleep and dreaming about drowning. I was in a pool and someone jumped on my head and I was stuck underwater drowning. Not gonna lie, it was kind of scary. OK, really scary. Dr. Lee, my transplant doctor for this floor, gave me lasix and a chest x-ray to be safe and, by lunch (read: 3 o'clock), I felt a bit better. The room still isn't quite moving with me, but that's cool because I can breathe, and we all know that's the most important part. It's a little crazy when you can't quite do the thing you rely on, but, modern medicine is amazing and I am thankful that it is working!
One of the best things about being in a hospital of this caliber is that when something isn't right, or you are feeling a side effect, it is taken care of right away. The other hospital experience I had when I was first diagnosed, remind me to tell you that story, was a lot of begging and waiting for drugs, and not even the fun ones. Here, when I report a side effect or am feeling discomfort, it is addressed within minutes. Man, am I thankful for good insurance. It's a fucking sin that everyone doesn't have access to this kind of health care.
Another great thing about being here is that there are an abundance of research studies and clinical trials to be taken advantage of. Some people aren't cool with these things, too untrustworthy, but I think they're great if they address a need. Today, I was asked to participate in a research study on the effect of exercise on transplant patients. Specifically tracking amount of exercise in a week (20 minutes, three times a week, minimum) on the outcome of transplant. Basically all I have to do is track how much I exercise each week on a chart and have it checked by my doctor or nurse. Mind you, this is not my typical kind of exercise. Walking around the floor a few times counts as exercise, an idea that I scoffed at until today. Man, this shit takes a toll on you! My plan the last few days has been to order my meals and then go walking until it shows up, 30 to 45 minutes later. Today, I made it twice around my pod (little section of ten rooms) in the morning and twice around the floor with Mom in the afternoon before getting too tired to go on. You know what? I'm alright with that. Just getting up and moving counts. OH!! BTW! A great perk of being in this research study is that they put an exercise bike in the corner of my room so I can pedal and watch TV or read a book if I'm too tired to get out and walk. Seriously people, I feel so damn lucky to have access to this kind of care. Here's my bike:)
For tonight though, I'm sitting my the little window in my room, watching a big Gulf storm roll in. It reminds me of home:) The next few days may or may not be the roughest so if I don't update, you'll know why. Tomorrow is the last day of Chemo (WAHOO!) with something called ATG (uh, it's derived from rabbits. weird.) for the next three. ATG can be tough for some people, please send prayers/intention/juju that it's smooth sailing for me. Of course, the big day is Friday.
Before I sign off, there is one person I would like to thank, besides, uh, ALL OF YOU. Thank you Heather, I wore them today and thought of roses.
Sunday, August 22, 2010
Stories in Silk and Cotton
Let me tell you some stories now, while I feel good:)
Grandma's Scarves
My Grandma Roman, my Mom's mother, passed lots of things down to me. At least, I like to think she did. Grandma Roman was a librarian- she used to send my brother and sister and I boxes of books, she was the one who sent me my first Harry Potter book (I'm obsessed...little known fact). She had a great sense of humor and a way of connecting with others even when she was grumpy as hell, which was often. When my sister and I were barely in middle school and high school respectively, Grandma gifted us tee shirts which she stated were not "In those extra jumbo large fruitcake sizes you kids like". Grandma Roman was sassy. One of my favorite pictures of her is one that Dad took during one of our last visits out to see her in CA before she had her stroke. In it, she is making an obscene gesture at the camera after my Dad called her a kiwi (I'll get to that reference in a minute). Once, when she was in the hospital after her stroke(Dad, correct me if I'm telling the story wrong) she looked at my Dad and said "Cliff, rub my leg!", and he responded with "Margaret, pull my finger!", she just laughed. Grandma Roman LOVED bright colors- pinks, blues, greens and especially yellow. My living room is now yellow and it reminds me of her house which was decorated in myriad yellow shades. Once, just before she passed, we went out to visit her and I was carrying this crazy handbag with bright pink peonies on it trimmed in lime green leather. Right up Grandma's ally. Grandma caught sight of it and declared that she HAD to have it. Mine was very dirty from use or I would have given it to her so we took her, wheelchair and all, to Macy's to find one like it. We found the exact bag and my Grandma and I carried matching bags:) She was known to wear lime green pants and a tee-shirt with giant slices of citrus fruit on it, which is what brought on the kiwi joke.
But one thing that Grandma Roman passed on to me that I treasure now more than anything, is her scarves. Grandma wore a different scarf every day. Silk, always, and in BRIGHT VIBRANT JOYOUS colors and always tied fashionably around her neck. When she passed away a few years ago, my cousins, aunts, Mom, sister and I split up her scarf collection. One of those scarves was even purchased by my sister and I with her the day we bought the handbag. Until now, her scarves sat folded in a drawer of their own in my bedroom, slightly forgotten about. The day I found out I was going to need a transplant, knowing that that meant I would lose my hair, I went to that drawer and pulled out those scarves. They still held the scent of her perfume. I tied one on over my hair and looked in the mirror and cried. I would like to share those scarves with you:
This gift from her has given more comfort and strength than I could have ever imagined. Thank you Grandma, I think of you when I tie one on and smell your perfume.
Maggie
Maggie and I met during the first week of 6th grade, became fast friends and have stayed that way since. Maggie is full of energy, full of love and full of life. She has been one of the strongest supports and most steadfast believers. She is a born nurse and I believe damn good at what she does. She was the first friend that I called when I was diagnosed- she left the bar she and people she was hanging out with and came over and sat with me on my bed and cried. She was in my wedding. She texts me funny stories and jokes and says outlandish things. She is a pillar of friendship and feminine strength. She is fucking gorgeous. Like, if she weren't married to the best man ever (besides P) I would set her up with every nice guy I met. Everyone should have a friend like Maggie.
A month or so ago, Maggie and I went to the mall on a lark to get her eyebrows threaded and see a trashy vampire movie that I swear to God isn't called Twilight (uh, maybe). On that day, we wandered into Hermes to look at the scarves they had hung in the window. One stood out beyond the rest. It was bright pink and when opened, was printed with angels, music notes, a treble and base clef and stars. IT was beautiful. And fancy.
The Sunday before we left for Houston, Maggie presented me with a goody bag with books, lip balm (or nipple cream, remind me to tell you THAT story sometime), a lullaby, and The Scarf.
Thank you, Maggie. For your years of friendship, big heart, wonderful laughter, strong shoulder to cry on and of course, most beautiful and generous scarf. Love you girl:)
Vera
In college, I had a mild obsession with that cult brand of brands, Vera Bradly. Wallets, eyeglass cases, handbags, watches. You name it, I loved it. Bright ass colors, floral designs, sign me up. One Christmas a few years ago, my brother and sister gave me a Vera scarf that I had admired with my Mom. It is bright pink (notice a pattern here?) and is decorated with songbirds and roses which remind me of the roses that were on the walls in the room we used to stay in at my Nan's when we were kids. I wear it and think of E and J.
Fall into the Gap
Like every college student, I needed a job in the summertime to make some extra dough. For a while I worked at a law firm in the summers (Hi Beth!) and loved it, but during the school year it was impossible to work there consistently. So, I got a job at Old Navy with a friend (Hey Honor!) down on Pier 70 on the riverfront. After a few months of being cursed out and witnessing fights, I requested a transfer to the mecca of college preppiness, The Gap. I LOVED working at the Gap. The hours were great, location (Walnut Street) was fantastic and the employee discount was the cat's balls. On payday, I would gather up my clearance rack purchases (um, HELLO 30% off of $5.00 merch!) and outfit myself. Just before I left that job to work as a nanny (another job I loved), I bought this scarf. It was meant to be a headband but I never really wore it until that one summer in the Hamptons (looonnng story).
I love this scarf because it feels good on my velcro-head right now. Thanks Gap:)
Being wrapped in these things, these talisman, make me think of happier times. It makes me feel like I'm wrapping myself in the stories, great and small, of my life and my ancestors. For this, I am supremely thankful.
Grandma's Scarves
My Grandma Roman, my Mom's mother, passed lots of things down to me. At least, I like to think she did. Grandma Roman was a librarian- she used to send my brother and sister and I boxes of books, she was the one who sent me my first Harry Potter book (I'm obsessed...little known fact). She had a great sense of humor and a way of connecting with others even when she was grumpy as hell, which was often. When my sister and I were barely in middle school and high school respectively, Grandma gifted us tee shirts which she stated were not "In those extra jumbo large fruitcake sizes you kids like". Grandma Roman was sassy. One of my favorite pictures of her is one that Dad took during one of our last visits out to see her in CA before she had her stroke. In it, she is making an obscene gesture at the camera after my Dad called her a kiwi (I'll get to that reference in a minute). Once, when she was in the hospital after her stroke(Dad, correct me if I'm telling the story wrong) she looked at my Dad and said "Cliff, rub my leg!", and he responded with "Margaret, pull my finger!", she just laughed. Grandma Roman LOVED bright colors- pinks, blues, greens and especially yellow. My living room is now yellow and it reminds me of her house which was decorated in myriad yellow shades. Once, just before she passed, we went out to visit her and I was carrying this crazy handbag with bright pink peonies on it trimmed in lime green leather. Right up Grandma's ally. Grandma caught sight of it and declared that she HAD to have it. Mine was very dirty from use or I would have given it to her so we took her, wheelchair and all, to Macy's to find one like it. We found the exact bag and my Grandma and I carried matching bags:) She was known to wear lime green pants and a tee-shirt with giant slices of citrus fruit on it, which is what brought on the kiwi joke.
But one thing that Grandma Roman passed on to me that I treasure now more than anything, is her scarves. Grandma wore a different scarf every day. Silk, always, and in BRIGHT VIBRANT JOYOUS colors and always tied fashionably around her neck. When she passed away a few years ago, my cousins, aunts, Mom, sister and I split up her scarf collection. One of those scarves was even purchased by my sister and I with her the day we bought the handbag. Until now, her scarves sat folded in a drawer of their own in my bedroom, slightly forgotten about. The day I found out I was going to need a transplant, knowing that that meant I would lose my hair, I went to that drawer and pulled out those scarves. They still held the scent of her perfume. I tied one on over my hair and looked in the mirror and cried. I would like to share those scarves with you:
This gift from her has given more comfort and strength than I could have ever imagined. Thank you Grandma, I think of you when I tie one on and smell your perfume.
Maggie
Maggie and I met during the first week of 6th grade, became fast friends and have stayed that way since. Maggie is full of energy, full of love and full of life. She has been one of the strongest supports and most steadfast believers. She is a born nurse and I believe damn good at what she does. She was the first friend that I called when I was diagnosed- she left the bar she and people she was hanging out with and came over and sat with me on my bed and cried. She was in my wedding. She texts me funny stories and jokes and says outlandish things. She is a pillar of friendship and feminine strength. She is fucking gorgeous. Like, if she weren't married to the best man ever (besides P) I would set her up with every nice guy I met. Everyone should have a friend like Maggie.
A month or so ago, Maggie and I went to the mall on a lark to get her eyebrows threaded and see a trashy vampire movie that I swear to God isn't called Twilight (uh, maybe). On that day, we wandered into Hermes to look at the scarves they had hung in the window. One stood out beyond the rest. It was bright pink and when opened, was printed with angels, music notes, a treble and base clef and stars. IT was beautiful. And fancy.
The Sunday before we left for Houston, Maggie presented me with a goody bag with books, lip balm (or nipple cream, remind me to tell you THAT story sometime), a lullaby, and The Scarf.
Vera
In college, I had a mild obsession with that cult brand of brands, Vera Bradly. Wallets, eyeglass cases, handbags, watches. You name it, I loved it. Bright ass colors, floral designs, sign me up. One Christmas a few years ago, my brother and sister gave me a Vera scarf that I had admired with my Mom. It is bright pink (notice a pattern here?) and is decorated with songbirds and roses which remind me of the roses that were on the walls in the room we used to stay in at my Nan's when we were kids. I wear it and think of E and J.
Fall into the Gap
Like every college student, I needed a job in the summertime to make some extra dough. For a while I worked at a law firm in the summers (Hi Beth!) and loved it, but during the school year it was impossible to work there consistently. So, I got a job at Old Navy with a friend (Hey Honor!) down on Pier 70 on the riverfront. After a few months of being cursed out and witnessing fights, I requested a transfer to the mecca of college preppiness, The Gap. I LOVED working at the Gap. The hours were great, location (Walnut Street) was fantastic and the employee discount was the cat's balls. On payday, I would gather up my clearance rack purchases (um, HELLO 30% off of $5.00 merch!) and outfit myself. Just before I left that job to work as a nanny (another job I loved), I bought this scarf. It was meant to be a headband but I never really wore it until that one summer in the Hamptons (looonnng story).
I love this scarf because it feels good on my velcro-head right now. Thanks Gap:)
Being wrapped in these things, these talisman, make me think of happier times. It makes me feel like I'm wrapping myself in the stories, great and small, of my life and my ancestors. For this, I am supremely thankful.
Chemopalooza Day 2 (or Day -5)
What a difference a day makes!
Last night my wonderful night nurse, Mitzi, told me that I could have two (count 'em TWO) doses of Ambien and a Darvon for my headache and the pain from the dressing change on my CVC, to which I said "Yes, PLEASE!". My goodness am I glad I did! Slept from 11 last night, right through 4 am vitals (they apparently made me get up and get weighed, don't remember that in the slightest), through 5 am Zofran and Benedryl (another offering yesterday to help temper the nausea), through line flushing (which I only know about because I tasted it in my dream and P corroborated the nurse's story), through chemo, through two doctors and a nurse and almost through breakfast. That's one hell of a sleep!!! Another reason? P went out and got me an eye mask to block out the light, like fancy ladies wear, at the advice of a good friend. You were right Lisa, best thing ever!
When I finally came to this morning, I found myself a touch nauseous again and, after learning my lesson from yesterday, requested "anything, everything, just not compazine". If there are any current or future patients reading this here's my advice: speak up and be nice about it, it's WORTH IT. In the interest of honesty, I will share that I still had a few bouts of crying this morning when I just got all self-pitying, but then P curled up around my in my hospital bed and kissed my bald little head and made me feel all better:). What a stand-up man, let me just tell you.
I dried my eyes, pulled on my big-girl pants and went for a long walk around the floor with P. When we came back, my breakfast was here (which P so kindly ordered for me) and I ate ALL OF IT. Like, ALL OF IT. Except for the fresh strawberry and orange slice which they (oops) put on there. It took tremendous self control not to inhale that and pretend like it never happened. Who woulda thunk that eating fresh fruits and veggies would be a habit to break. That's enough about my food, what boring reading.
At the moment, I'm winding down from another long (and brisk!) walk around the floor and indulging in Father of the Bride Part II.
Something that I discovered yesterday is that if I allow myself to feel stripped of my being, of my humanity, which is an easy thing to feel around here, that I will begin to spiral downward. If I reach out and connect, ask my nurses names and USE THEM, chat with the Nursing Assistants and family members on the floor, respond to text messages, blog, update facebook and joke around with P, I will stay stronger and happier. Sadness is inevitable, but it does not need to be a condition. I spent a good half hour talking with my night nursing assistant, Mercy, who told me all about her sons and her life as a teacher in India. It felt so good to connect and learn, like I could feel my heart swell when she smiled. Thank you, Mercy, I don't think you'll read this, but I'll send it into the universe anyway.
Homesickness is a hard thing to deal with when you are stuck in a tiny hospital room, but P's brother G sent a kickin' cool video of our cats wandering around last night. Just a shout-out to G to say thank you again, I cried, but only because I can't wait to squeeze those little fuzzballs again:)
Thank you for the comments and the calls and the texts, I know I say it all the time, but it means the world to feel connected. Feeling very thankful today for the opportunity to share with you and the messages of love and support coming back. Much love, Philly!
Last night my wonderful night nurse, Mitzi, told me that I could have two (count 'em TWO) doses of Ambien and a Darvon for my headache and the pain from the dressing change on my CVC, to which I said "Yes, PLEASE!". My goodness am I glad I did! Slept from 11 last night, right through 4 am vitals (they apparently made me get up and get weighed, don't remember that in the slightest), through 5 am Zofran and Benedryl (another offering yesterday to help temper the nausea), through line flushing (which I only know about because I tasted it in my dream and P corroborated the nurse's story), through chemo, through two doctors and a nurse and almost through breakfast. That's one hell of a sleep!!! Another reason? P went out and got me an eye mask to block out the light, like fancy ladies wear, at the advice of a good friend. You were right Lisa, best thing ever!
When I finally came to this morning, I found myself a touch nauseous again and, after learning my lesson from yesterday, requested "anything, everything, just not compazine". If there are any current or future patients reading this here's my advice: speak up and be nice about it, it's WORTH IT. In the interest of honesty, I will share that I still had a few bouts of crying this morning when I just got all self-pitying, but then P curled up around my in my hospital bed and kissed my bald little head and made me feel all better:). What a stand-up man, let me just tell you.
I dried my eyes, pulled on my big-girl pants and went for a long walk around the floor with P. When we came back, my breakfast was here (which P so kindly ordered for me) and I ate ALL OF IT. Like, ALL OF IT. Except for the fresh strawberry and orange slice which they (oops) put on there. It took tremendous self control not to inhale that and pretend like it never happened. Who woulda thunk that eating fresh fruits and veggies would be a habit to break. That's enough about my food, what boring reading.
At the moment, I'm winding down from another long (and brisk!) walk around the floor and indulging in Father of the Bride Part II.
Something that I discovered yesterday is that if I allow myself to feel stripped of my being, of my humanity, which is an easy thing to feel around here, that I will begin to spiral downward. If I reach out and connect, ask my nurses names and USE THEM, chat with the Nursing Assistants and family members on the floor, respond to text messages, blog, update facebook and joke around with P, I will stay stronger and happier. Sadness is inevitable, but it does not need to be a condition. I spent a good half hour talking with my night nursing assistant, Mercy, who told me all about her sons and her life as a teacher in India. It felt so good to connect and learn, like I could feel my heart swell when she smiled. Thank you, Mercy, I don't think you'll read this, but I'll send it into the universe anyway.
Homesickness is a hard thing to deal with when you are stuck in a tiny hospital room, but P's brother G sent a kickin' cool video of our cats wandering around last night. Just a shout-out to G to say thank you again, I cried, but only because I can't wait to squeeze those little fuzzballs again:)
Thank you for the comments and the calls and the texts, I know I say it all the time, but it means the world to feel connected. Feeling very thankful today for the opportunity to share with you and the messages of love and support coming back. Much love, Philly!
Saturday, August 21, 2010
Hospital Pranayama
So, I have to do breathing exercises (hospital pranayama?) ten times every two hours with this nifty device....observe:
The goal is to keep that little blue thing on the right elevated between two arrows by sucking (lol) air through that tube for as long as I can. This will keep my lungs nice and strong:) Honestly, it kind of feels good, like good pranayama should!
Chemopalooza Day 1 (or Day -6)
Gonna keep this short and sassy:
Didn't really sleep well alst night because I was so anxious about this morning, maybe averaged 2 or 3 sold hours even with the ambien (no naked drive though, thank goodness) but I got a solid two hour nap in this afternoon so I'm not too zonked. Day -6 (6 days pre-transplant) went a little something like this: 4 am vitals. 5 am Zofran. 6 am chemo. 7 am amost-puke/ Compazine. 7:15am onwards, feelin' restless and goofy from the Compazine, chemo and presence in a fucking hospital. The medical staff and volunteers here are wonderful- I now have a keyboard in my closet to play as soon as I don't feel like I'm gonna yam on it:) P left for a few hours to run errands and I spent my time crying, trying not to puke, feeling sorry for myself, trying to sleep and being bored out of my bald little skull. This will get better, this will pass but it sucks balls at the moment.
I'll try to post more tomorrow but for now I'm gonna go stick my head in a basin and pray to jesus/buddah/allah/krishna that I don't lose my few bites of lunch. OH, and I get to pee in a measurey thing in the toilet, it's weird. Just thought I'd share. Thanks for the texts and calls y'all, I'm sorry I can't respond:( Much love!
A quick post before the Ambien kicks in
Such a busy day! Take a ride with me:
Checked out of the hotel and into our apartment. It's quite nice and decorated exactly like your grandma's would be, cozy, comforting and welcoming:) Thanks again Church Apartment Ministries!
Enjoyed my "last meal" before admission: bloody steak, a big salad, plate of veggies, and berries for dessert. Gotta love the now 'forbidden' foods.
Checked into the hospital around 8:30 pm when my room was ready. There is a big sign on my door saying "STOP wash hands thoroughly! Wear mask and gloves! In isolation!". They ain't kidding. I'm on the PEDS floor which means lots o bright colors and friendly nurses, a 'teen and young adult room' and a half court bball room. Oh, p.s. there's a freaking Wii in my room! SO glad we were given the option of being on this floor. And not just for the Wii perks, I promise.
Chemotherapy, fludarabine to be specific, starts at 6am tomorrow and will only take about an hour. MMMMMMMM eggs and chemo for breakfast! Does it come with ketchup?
At the moment P is sleeping on the trundle bed in the room, Mom is back at the apartment because she's got the sniffles:( and I'm bald as the day is long, hooked up to my IV and watching Jersey Shore on my laptop.
So, dear friends, goodnight. Tomorrow is a big day, I've got my mala at the ready and the intention of those 108 Ganapati mantras to go with the chemo.
Much love to Philly and beyond and thank you for the 25(+!) comments of well wishing and support. Keep 'em coming y'all!!
Miss all of you greatly.
Checked out of the hotel and into our apartment. It's quite nice and decorated exactly like your grandma's would be, cozy, comforting and welcoming:) Thanks again Church Apartment Ministries!
Enjoyed my "last meal" before admission: bloody steak, a big salad, plate of veggies, and berries for dessert. Gotta love the now 'forbidden' foods.
Checked into the hospital around 8:30 pm when my room was ready. There is a big sign on my door saying "STOP wash hands thoroughly! Wear mask and gloves! In isolation!". They ain't kidding. I'm on the PEDS floor which means lots o bright colors and friendly nurses, a 'teen and young adult room' and a half court bball room. Oh, p.s. there's a freaking Wii in my room! SO glad we were given the option of being on this floor. And not just for the Wii perks, I promise.
Chemotherapy, fludarabine to be specific, starts at 6am tomorrow and will only take about an hour. MMMMMMMM eggs and chemo for breakfast! Does it come with ketchup?
At the moment P is sleeping on the trundle bed in the room, Mom is back at the apartment because she's got the sniffles:( and I'm bald as the day is long, hooked up to my IV and watching Jersey Shore on my laptop.
So, dear friends, goodnight. Tomorrow is a big day, I've got my mala at the ready and the intention of those 108 Ganapati mantras to go with the chemo.
Much love to Philly and beyond and thank you for the 25(+!) comments of well wishing and support. Keep 'em coming y'all!!
Miss all of you greatly.
Thursday, August 19, 2010
Baldylocks
In between appointments today, I took the plunge and shaved my head.
::gasp:: This shit just got real.
Literally, I actually shaved my head myself, well, about four square inches of my head. We took an AWESOME video of it too buuuuut Apple SUCKS (yes, Steve Jobs, your fucking products SUCK) and my MacBook only recorded 2 seconds of footage while lying to us and saying that it was recording the whole time. If you are reading this Steve Jobs, the iPhone is cool and all but I kind of want to cuss you out. Oops, I might have already done that.
When P and I discovered that the TEN MINUTE video he had taken was gone, there was cursing, crying, damning Apple to hell and then we grew up and decided to make the best of it. Here is a play-by-play of how the head shaving happened. Ain't he the best sport ever?
In all honesty, I expected to be much more emotional about losing my hair than I really am. As I discovered this morning, showering with my port involves complicated gymnastics with ClingWrap and water proof tape and hair makes this VERY difficult. Something else that yoga has helped me with on this journey? The ability to reach my arms much further down and across my shoulder blades than the average bear, making ClingWrap application a little easier. Thanks yoga! It may be appropriate to thank my yoga practice for giving me the strength in spirit to recognize that I am not my outer appearance, that I am so much more. There was also the power doing this gave me to control losing my hair on MY terms. This was not the tearful event that I had anticipated, though there was a moment where I felt a little emotional. This was empowering and freeing. It was also sort of funny to see how surprised the volunteer who helped me tie my scarf (a proper Texan lady, diamonds and all) became when I politely declined the offer of a free wig. My boobs are too big to burn my bra, so I'll go wig-less instead:)
After my afternoon appointments with the research coordinator and nurse, in which I had my port accessed for the first time (did you know that it tastes like a bandaid when they flush your port with saline and heparin? Neither did I. Surprise!) P and I took a pilgrimage to Target to buy some DVDs (Dawson's Creek Season One and Two anyone?!?) and v-neck t-shirts. I discovered that with my broad shoulders and this port, I look like a robot in normal t-shirts. That's cool though because I round a badass tee with skulls all over it:) Watch out BMT floor! This, however, was my first adventure out into the noncancer world with my bald ass head (I had a scarf on, you'll get another post about the scarves). My word do people stare. All I can say is that I sincerely hope that I have never stared at someone like that, though in all honesty I probably have and didn't realize it. Three separate women commented on the scarf I was wearing and how pretty it is (it IS pretty) and I wasn't sure how to take this. Yes, the scarf is beautiful, but it made me wonder if this was a way for those women to reach out in an easy manner. Either way, I'm totally fine with it, it just made me see the world through new eyes. I've been a cancer patient for almost two years now but today is the first time I've looked like the public image of a "Cancer Patient". In fact, on some of my sickest days so far (which will not be be sickest ever, if the nurses are correct in what they told me this morning), I have looked completely normal, if not a little tired. Appearances can be deceiving, huh?
As we were heading back from Target, we got a pretty effing cool phone call informing us that the Church Ministries came through and got us a BIGGER apartment and a location CLOSER to the hospital for LESS money! Kick ass! It's a great place (we may have gone to snoop:)). Even better? P and my Mom, who gets here tonight, will be able to move in tomorrow and I'll get to see it before heading off to the hospital. Thanks Church Apartment Ministries!
Tomorrow is the big move day, I don't know if I'll be able to post at all but I'm sure I'll be all up on Facebook. Oh, yeah. Can I ask a favor? So, apparently Blogger has a new feature where you can have your blog printed and bound into a book, including all comments, when you're done posting. This sounds like a pretty powerful keepsake, huh? Well, may I request that you, dear readers and friends, post your comments here instead of in a Facebook message if it's short? Thank you:)
And now, a shout out to J.B. and her husband T.B. (you will know who you are) who sent me a really cool message today about sexy bald ladies. Thank you:) What impeccable timing and what amazing support. From the bottom of my bald heart, thank you.
Thank you friends, much love to Philly:)! I'll leave you with some pictures of my shaving adventure and my sweet 'hawk.
Last picture of my with hair!
All done! Thank you Michelle and the Volunteer Beauty Salon at M.D. Anderson!
::gasp:: This shit just got real.
Literally, I actually shaved my head myself, well, about four square inches of my head. We took an AWESOME video of it too buuuuut Apple SUCKS (yes, Steve Jobs, your fucking products SUCK) and my MacBook only recorded 2 seconds of footage while lying to us and saying that it was recording the whole time. If you are reading this Steve Jobs, the iPhone is cool and all but I kind of want to cuss you out. Oops, I might have already done that.
When P and I discovered that the TEN MINUTE video he had taken was gone, there was cursing, crying, damning Apple to hell and then we grew up and decided to make the best of it. Here is a play-by-play of how the head shaving happened. Ain't he the best sport ever?
In all honesty, I expected to be much more emotional about losing my hair than I really am. As I discovered this morning, showering with my port involves complicated gymnastics with ClingWrap and water proof tape and hair makes this VERY difficult. Something else that yoga has helped me with on this journey? The ability to reach my arms much further down and across my shoulder blades than the average bear, making ClingWrap application a little easier. Thanks yoga! It may be appropriate to thank my yoga practice for giving me the strength in spirit to recognize that I am not my outer appearance, that I am so much more. There was also the power doing this gave me to control losing my hair on MY terms. This was not the tearful event that I had anticipated, though there was a moment where I felt a little emotional. This was empowering and freeing. It was also sort of funny to see how surprised the volunteer who helped me tie my scarf (a proper Texan lady, diamonds and all) became when I politely declined the offer of a free wig. My boobs are too big to burn my bra, so I'll go wig-less instead:)
After my afternoon appointments with the research coordinator and nurse, in which I had my port accessed for the first time (did you know that it tastes like a bandaid when they flush your port with saline and heparin? Neither did I. Surprise!) P and I took a pilgrimage to Target to buy some DVDs (Dawson's Creek Season One and Two anyone?!?) and v-neck t-shirts. I discovered that with my broad shoulders and this port, I look like a robot in normal t-shirts. That's cool though because I round a badass tee with skulls all over it:) Watch out BMT floor! This, however, was my first adventure out into the noncancer world with my bald ass head (I had a scarf on, you'll get another post about the scarves). My word do people stare. All I can say is that I sincerely hope that I have never stared at someone like that, though in all honesty I probably have and didn't realize it. Three separate women commented on the scarf I was wearing and how pretty it is (it IS pretty) and I wasn't sure how to take this. Yes, the scarf is beautiful, but it made me wonder if this was a way for those women to reach out in an easy manner. Either way, I'm totally fine with it, it just made me see the world through new eyes. I've been a cancer patient for almost two years now but today is the first time I've looked like the public image of a "Cancer Patient". In fact, on some of my sickest days so far (which will not be be sickest ever, if the nurses are correct in what they told me this morning), I have looked completely normal, if not a little tired. Appearances can be deceiving, huh?
As we were heading back from Target, we got a pretty effing cool phone call informing us that the Church Ministries came through and got us a BIGGER apartment and a location CLOSER to the hospital for LESS money! Kick ass! It's a great place (we may have gone to snoop:)). Even better? P and my Mom, who gets here tonight, will be able to move in tomorrow and I'll get to see it before heading off to the hospital. Thanks Church Apartment Ministries!
Tomorrow is the big move day, I don't know if I'll be able to post at all but I'm sure I'll be all up on Facebook. Oh, yeah. Can I ask a favor? So, apparently Blogger has a new feature where you can have your blog printed and bound into a book, including all comments, when you're done posting. This sounds like a pretty powerful keepsake, huh? Well, may I request that you, dear readers and friends, post your comments here instead of in a Facebook message if it's short? Thank you:)
And now, a shout out to J.B. and her husband T.B. (you will know who you are) who sent me a really cool message today about sexy bald ladies. Thank you:) What impeccable timing and what amazing support. From the bottom of my bald heart, thank you.
Thank you friends, much love to Philly:)! I'll leave you with some pictures of my shaving adventure and my sweet 'hawk.
Wednesday, August 18, 2010
Dear World, meet my CVC
Hi world, this motherfucker is stuck in my chest. It has a small slender tube that goes into my superior vena cava (for you anatomy nerds out there) and three lumens (little plastic doohickies) that hang out of my chest which will be used for my chemotherapy, blood draws, transfusions, and the transplant itself. It hurts like a bastard and I think it looks like an alien octopus (tripus?) that is digging is bastardy little teeth into my chest. Meet my CVC:
This post is going to be mostly cursing, venting and one amazing story but I do have some bits of good news, things that made me smile, that I will share as well. Remind me if I forget, k? Cool.
My CVC or subclavian catheter insertion was scheduled for 11am this morning. As with most things in hospitals, even the best hospitals, it was delayed. Usually this kind of delay (an hour before I was called back for prep) would be effing annoying but today, it was a blessing. As P and I were sitting in the waiting room, as far removed from everyone as possible to reduce the risk of infection from the coughing masses, this bubbly, short haired, young woman walks up carrying a big bag with a big fluffy blanket in it. She asked if she could sit with us and then asked if we wanted to talk. Her name is Sarah. Sarah had a carcinoma in her right shoulder that was removed some time ago and found out last week that her cancer has spread. Yesterday, she found out that it is in her lungs, liver and bones. She described her sobs when she found out, chuckling a bit and joking that everyone down the hall must have heard it. Sarah, asked if P and I were newly married, we said yes, and she shared that she and her husband were just married this past Sunday after deciding to be wed only the day before. She was clearly scared, very nervous and such a bright, bright soul. Sarah is also an elementary school teacher, we shared our diagnosis stories and how we handled our diagnosis with our students. We talked about how shitty is is that we're so young and have cancer. We talked about how scared we were of the CVC insertion and of chemo. We talked about losing our hair and whether or not we had good looking heads. She told me about the big wedding her church threw for her husband and her and she cried a little talking about it. We met her husband, he was very, very nice. Sarah laughed and smiled all the while clearly scared out of her mind. All I wanted to do was give her a big hug and tell her that I was selfishly so thankful to meet her and that I wanted to give her all the comfort in the world. Sarah and I exchanged emails and cell phone numbers and when she was called back, I texted her to tell her that I knew she would be OK. Sarah texted me at the same time:) Her prognosis is very scary but I will not say bad. No one with the kind of spirit Sarah has could have a "bad" prognosis. After I had my CVC, we met again in the waiting room (I'll get to why in a moment) and Sarah was in a wheel chair very shaken. Her CVC insertion didn't go so smoothly, they did not knock her out and when they inserted the tub into her vein, it went in the wrong vein and she felt it go up her neck, so it needed to be redone. She had a hard time with the procedure but her mom, whom we met in the waiting room, was there comforting her. You can tell where Sarah gets her spirit from, her mom was a very nice woman. Sarah is starting a long and difficult road of chemotherapy tomorrow. Please say prayers, set intention or send good juju her way. She is an amazing young woman and deserves to live a long and healthy life with her new husband.
So, now that I've wept a little writing that, let me tell you about the time I almost told my anesthesiologist to fuck off. Cute, right? Allow me to elaborate.
When MDA called me to confirm my admission date and CVC insertion date, they gave me a choice in how I would like to undergo the CVC procedure and Bone Marrow Biopsy (which I had yesterday, yowza): local anesthetic (just to numb the skin), ativan or similar drug (to make me "not care" but not put me to sleep) and general anesthesia (knock you the fuck out). I informed the kind nurse that I could deal with the BMB with just local anesthetic and pain medication after the fact, but did not need the memory of the CVC procedure thank-you-very-much and to please knock me (the fuck- I did not say this) out. This means that I had my CVC procedure done in an operating room with two nurses, a surgeon and an anesthesiologist. Let me just say that the nurses here are amazing, no two ways about it. They walked me down to the operating room, chatting the whole time about IVF, wigs and scarves and answered all of my questions with big smiles and kinds pats on the hand. The anesthesiologist, didn't catch her name, don't care, arrived to put in an IV in my hand and set up the propofol (yes, the Michael Jackson drug, the same drug I had for IVF). She tries to put in the IV, I instinctively pulled away and she yanks my hand back and reprimands me a a stern "stop moving!". Then she put my hand on her knee (AWKward) and jams the damn thing in further (uh, inch long needle in the vein in the back of my hand). It still stings (I may or may not have repeated "balls" several times making the proper southern nurse giggle) and I tell her so when she asked and she says "I'll give you more numbing stuff (she used some word, I don't remember what) but I don't know why it still hurts". Um, I don't care why. JUST DO IT. Kthnx. The nurses were exchanging meaningful glances that were NOT lost on me.
SO, I get fully IV-ed and numbed, alcohol swabbed, covered in drapes, have little heart monitor thingy stuck all over me, and oxygen masked aaaaaaaannnnnnnnnddddd we wait. Wait. Wait some more. Waaaaiiiit for the surgeon. Anesthesiologist lady was all miffed about this because she had "been in PEDS all morning and now she has to do this and just doesn't wait to wait". Yeah, sorry for inconveniencing you with your FUCKING JOB lady. Whatevs. All that waiting must have gotten to A-lady's head (I'm sick of typing out anethesiwhatathingy) because she decides to start asking me questions about my nose ring. "Did that hurt", yep. "Where did you get it done?", in a piercing salon in Philadelphia. "Did they clean it first?", uh, yes. "What did they clean it with", I don't know, it smelled like alcohol. "JUST PLAIN ALCOHOL!?", No, it wasn't vodka, I think it was a swab (kind nurse Wendy pipes up and says this for me, go Wendy). Then she says this:
"I don't understand why you can get that done without anesthetic but you can't do this without anesthetic. No one gets knocked out for this. They really don't like to put you under for this, they just don't have enough people to do this for everyone."
UM, excuse-fucking-me? Kind nurse Wendy spoke up right away and says "No, we do this for lots of people, I would do it this way too." I just smiled at A(hole)-lady and said "Well, I got something cool out of getting my nose pierced, and it was my choice, so that's why that was OK. They gave me a choice in whether I wanted to be knocked out for this or not, and I decided that I didn't need the memory of this. I don't think you would either". You know what lady? This is not the time or place for you to share your opinion on how someone else handles their CANCER. Kindly STFU and die. Asshole.
Then the surgeon finally shows (after a bit more bitching and requests for pages....45 minutes late) and a conversation ensues about when he was pages, how long we've been waiting and then someone noticed that I was still awake. Another A-guy takes over, who was quite nice, and puts me out. Sometime later, I wake up, look down, spot the CVC start crying and apparently told the nurses drunk stories from my TU days. I'm just that awesome apparently.
P wheeled my crying ass over to get my chest x-ray (to be sure they had it in the right vein), helped me get dressed, and then bought me lunch. A big, greasy, junk food lunch (I don't care, it was good, I was sad and weepy and I wanted chick-fil-a. so gross but SO GOOD. healthy/vegan/vegetarian friends, don't judge, you would do the same damn thing). Honestly, I understand the risk of puking your guts up, but making someone wait until 2:30 to eat or drink anything is cruel and unusual punishment.
The chest x-ray came up just fine (an hour and a half later) and we dragged ourselves back to the hotel room. At the moment, I'm laying in bed with a frozen eye mask resting on my neck, over my sweater, above the CVC, P is curled up and sleeping and the pain meds are kicking in.
After all that whiny-ness, here's some good news:) In no particular order:
1) I will be on a special stem cell transplant floor for patients between the ages of 18 and 25. This makes me feel very relieved, it's hard to be the youngest patient around.
2) Dr. de Lima told me that I may be able to have the CVC taken out before returning to Philadelphia
3) My mom is arriving tomorrow:)
4) P and I had a nice diner out at a steakhouse last night called "Taste of Texas" thanks to my generous Grandmother. It felt like an episode of King of the Hill and our waiter was shocked when I ordered the large plate of veggies as a side dish for my steak. Is was like I took the lord's name in vain or something.
Some other random facts:
The nose ring and belly button ring have to come out:( As sad as I am about "losing" those markers of teenage rebellion, I'd rather not get some weird infection and lose half of my nose or something. They can be re-pierced. Meh.
My donor will be making his donation via 100 hole drilled in his pelvis next week. Apparently I will receive my transplant the same day he makes his donation (Still the 27th, his donation date changed) and it will be brought directly to me. My new blood type will be O Neg. Please send some of your prayers, intention or good juju his way. I owe him my life.
There is a yoga practice to be found in all of this. More than anything I have had to rely on my breath these last two days. When someone is poking you with sharp objects, or saying stupid things or you are in pain, even when you are meeting someone whose pain you can just feel, the only thing to turn to is the breath. In. Out. In. Out. Even when taking a chest x-ray, there is a breathing pattern to go to. The breath will float me through this. The memory of my kula will float me through, even when I feel so alone.
I know I say this at the end of nearly every post, but it's worth repeating: Thank you. The text messages, e-mails (the JOKES! oh, J those jokes:) made my freaking morning, thank you), facebook messages and posts and phone calls have a been a much needed connection to home. The last few days have been tough on the homesick front for P and I and we are uplifted every time we hear from you. We love you and miss you and can't wait to get out butts back home:)
Much love!
My CVC or subclavian catheter insertion was scheduled for 11am this morning. As with most things in hospitals, even the best hospitals, it was delayed. Usually this kind of delay (an hour before I was called back for prep) would be effing annoying but today, it was a blessing. As P and I were sitting in the waiting room, as far removed from everyone as possible to reduce the risk of infection from the coughing masses, this bubbly, short haired, young woman walks up carrying a big bag with a big fluffy blanket in it. She asked if she could sit with us and then asked if we wanted to talk. Her name is Sarah. Sarah had a carcinoma in her right shoulder that was removed some time ago and found out last week that her cancer has spread. Yesterday, she found out that it is in her lungs, liver and bones. She described her sobs when she found out, chuckling a bit and joking that everyone down the hall must have heard it. Sarah, asked if P and I were newly married, we said yes, and she shared that she and her husband were just married this past Sunday after deciding to be wed only the day before. She was clearly scared, very nervous and such a bright, bright soul. Sarah is also an elementary school teacher, we shared our diagnosis stories and how we handled our diagnosis with our students. We talked about how shitty is is that we're so young and have cancer. We talked about how scared we were of the CVC insertion and of chemo. We talked about losing our hair and whether or not we had good looking heads. She told me about the big wedding her church threw for her husband and her and she cried a little talking about it. We met her husband, he was very, very nice. Sarah laughed and smiled all the while clearly scared out of her mind. All I wanted to do was give her a big hug and tell her that I was selfishly so thankful to meet her and that I wanted to give her all the comfort in the world. Sarah and I exchanged emails and cell phone numbers and when she was called back, I texted her to tell her that I knew she would be OK. Sarah texted me at the same time:) Her prognosis is very scary but I will not say bad. No one with the kind of spirit Sarah has could have a "bad" prognosis. After I had my CVC, we met again in the waiting room (I'll get to why in a moment) and Sarah was in a wheel chair very shaken. Her CVC insertion didn't go so smoothly, they did not knock her out and when they inserted the tub into her vein, it went in the wrong vein and she felt it go up her neck, so it needed to be redone. She had a hard time with the procedure but her mom, whom we met in the waiting room, was there comforting her. You can tell where Sarah gets her spirit from, her mom was a very nice woman. Sarah is starting a long and difficult road of chemotherapy tomorrow. Please say prayers, set intention or send good juju her way. She is an amazing young woman and deserves to live a long and healthy life with her new husband.
So, now that I've wept a little writing that, let me tell you about the time I almost told my anesthesiologist to fuck off. Cute, right? Allow me to elaborate.
When MDA called me to confirm my admission date and CVC insertion date, they gave me a choice in how I would like to undergo the CVC procedure and Bone Marrow Biopsy (which I had yesterday, yowza): local anesthetic (just to numb the skin), ativan or similar drug (to make me "not care" but not put me to sleep) and general anesthesia (knock you the fuck out). I informed the kind nurse that I could deal with the BMB with just local anesthetic and pain medication after the fact, but did not need the memory of the CVC procedure thank-you-very-much and to please knock me (the fuck- I did not say this) out. This means that I had my CVC procedure done in an operating room with two nurses, a surgeon and an anesthesiologist. Let me just say that the nurses here are amazing, no two ways about it. They walked me down to the operating room, chatting the whole time about IVF, wigs and scarves and answered all of my questions with big smiles and kinds pats on the hand. The anesthesiologist, didn't catch her name, don't care, arrived to put in an IV in my hand and set up the propofol (yes, the Michael Jackson drug, the same drug I had for IVF). She tries to put in the IV, I instinctively pulled away and she yanks my hand back and reprimands me a a stern "stop moving!". Then she put my hand on her knee (AWKward) and jams the damn thing in further (uh, inch long needle in the vein in the back of my hand). It still stings (I may or may not have repeated "balls" several times making the proper southern nurse giggle) and I tell her so when she asked and she says "I'll give you more numbing stuff (she used some word, I don't remember what) but I don't know why it still hurts". Um, I don't care why. JUST DO IT. Kthnx. The nurses were exchanging meaningful glances that were NOT lost on me.
SO, I get fully IV-ed and numbed, alcohol swabbed, covered in drapes, have little heart monitor thingy stuck all over me, and oxygen masked aaaaaaaannnnnnnnnddddd we wait. Wait. Wait some more. Waaaaiiiit for the surgeon. Anesthesiologist lady was all miffed about this because she had "been in PEDS all morning and now she has to do this and just doesn't wait to wait". Yeah, sorry for inconveniencing you with your FUCKING JOB lady. Whatevs. All that waiting must have gotten to A-lady's head (I'm sick of typing out anethesiwhatathingy) because she decides to start asking me questions about my nose ring. "Did that hurt", yep. "Where did you get it done?", in a piercing salon in Philadelphia. "Did they clean it first?", uh, yes. "What did they clean it with", I don't know, it smelled like alcohol. "JUST PLAIN ALCOHOL!?", No, it wasn't vodka, I think it was a swab (kind nurse Wendy pipes up and says this for me, go Wendy). Then she says this:
"I don't understand why you can get that done without anesthetic but you can't do this without anesthetic. No one gets knocked out for this. They really don't like to put you under for this, they just don't have enough people to do this for everyone."
UM, excuse-fucking-me? Kind nurse Wendy spoke up right away and says "No, we do this for lots of people, I would do it this way too." I just smiled at A(hole)-lady and said "Well, I got something cool out of getting my nose pierced, and it was my choice, so that's why that was OK. They gave me a choice in whether I wanted to be knocked out for this or not, and I decided that I didn't need the memory of this. I don't think you would either". You know what lady? This is not the time or place for you to share your opinion on how someone else handles their CANCER. Kindly STFU and die. Asshole.
Then the surgeon finally shows (after a bit more bitching and requests for pages....45 minutes late) and a conversation ensues about when he was pages, how long we've been waiting and then someone noticed that I was still awake. Another A-guy takes over, who was quite nice, and puts me out. Sometime later, I wake up, look down, spot the CVC start crying and apparently told the nurses drunk stories from my TU days. I'm just that awesome apparently.
P wheeled my crying ass over to get my chest x-ray (to be sure they had it in the right vein), helped me get dressed, and then bought me lunch. A big, greasy, junk food lunch (I don't care, it was good, I was sad and weepy and I wanted chick-fil-a. so gross but SO GOOD. healthy/vegan/vegetarian friends, don't judge, you would do the same damn thing). Honestly, I understand the risk of puking your guts up, but making someone wait until 2:30 to eat or drink anything is cruel and unusual punishment.
The chest x-ray came up just fine (an hour and a half later) and we dragged ourselves back to the hotel room. At the moment, I'm laying in bed with a frozen eye mask resting on my neck, over my sweater, above the CVC, P is curled up and sleeping and the pain meds are kicking in.
After all that whiny-ness, here's some good news:) In no particular order:
1) I will be on a special stem cell transplant floor for patients between the ages of 18 and 25. This makes me feel very relieved, it's hard to be the youngest patient around.
2) Dr. de Lima told me that I may be able to have the CVC taken out before returning to Philadelphia
3) My mom is arriving tomorrow:)
4) P and I had a nice diner out at a steakhouse last night called "Taste of Texas" thanks to my generous Grandmother. It felt like an episode of King of the Hill and our waiter was shocked when I ordered the large plate of veggies as a side dish for my steak. Is was like I took the lord's name in vain or something.
Some other random facts:
The nose ring and belly button ring have to come out:( As sad as I am about "losing" those markers of teenage rebellion, I'd rather not get some weird infection and lose half of my nose or something. They can be re-pierced. Meh.
My donor will be making his donation via 100 hole drilled in his pelvis next week. Apparently I will receive my transplant the same day he makes his donation (Still the 27th, his donation date changed) and it will be brought directly to me. My new blood type will be O Neg. Please send some of your prayers, intention or good juju his way. I owe him my life.
There is a yoga practice to be found in all of this. More than anything I have had to rely on my breath these last two days. When someone is poking you with sharp objects, or saying stupid things or you are in pain, even when you are meeting someone whose pain you can just feel, the only thing to turn to is the breath. In. Out. In. Out. Even when taking a chest x-ray, there is a breathing pattern to go to. The breath will float me through this. The memory of my kula will float me through, even when I feel so alone.
I know I say this at the end of nearly every post, but it's worth repeating: Thank you. The text messages, e-mails (the JOKES! oh, J those jokes:) made my freaking morning, thank you), facebook messages and posts and phone calls have a been a much needed connection to home. The last few days have been tough on the homesick front for P and I and we are uplifted every time we hear from you. We love you and miss you and can't wait to get out butts back home:)
Much love!
Monday, August 16, 2010
An Apartment and a schedule
Just a quick update tonight. Lots has gone on this weekend, even in the absence of appointments...shocking really. I've been either too busy or too tired to update properly, sorry dear friends. Trust that I have much to share with you:(
The basics:
P and I signed a lease for an apartment today. Thank goodness! This was getting stressful! It's only 5 or so minutes from the hospital and quite nice actually. It's a nice new property, two bedrooms, two baths, furnished, has a pool and a fitness center...lots of good stuff to keep P and Mom occupied. It's also big enough that I don't think I'll want to jump out of a window while living indoors during my 100 days isolation.....maybe? I will not be posting the address here (duh.) but will forward it along to friends, family and work. No creepers here, mmmmkay? Mmmmkay.
Tomorrow's schedule looks a little something like this :
9:00am: Blood Draw (probably a surprise pee test too, sweet!)
10:30 am Business Center Follow-up (gimme 'yo money!)
11:00 am Visit with Dr. de Lima
11:30 am Transplant Coordinator Visit
2:30 pm Bone Marrow Aspiration/ Biopsy (I fucking hate these. There is no way to sugarcoat this. Screwing a hollow needle into my pelvis and sucking out marrow BLOWS. Hopefully I'll get some good meds out of it- what, you think EVERYONE who has had one of these hasn't thought the same thing? Please, save the puritan nonsense for someone who doesn't have a bleeding hole in their hip bone :) )
For those of you who are on FB, you know that I posted about the crazy yoga studio near here that offers the 'yoga facelift'. Yes, I did end up going to class because I just NEEDED to sweat somewhere other than my hotel room. No, my face is not any more lifted, if fact, they didn't do anything involving the face really. There is a really funny story here too, but I'm too damn tired to post it. Let's put it this way, the class was fun, but not in the same way that DYML is fun (or special, or friendly, or warm...shall I go on?). More of a "I can't believe that lady just did that without smearing her makeup and OMG STOP SHOVING MY ARMPITS INTO MY MAT!!!" kind of way. The space was really nice though:)
Thank you dear friends who have called and texted, I don't want you to think that your words are being ignored if I haven't responded, we never expected to be so busy or so tired:( I will make it a point to try to get talk to many of you before going into the hospital, because that is very important. P and I miss home so very much and just want to say how thankful we are for your love, kindness and generosity. All snarkiness aside, thank you and much love to Philly. xo
The basics:
P and I signed a lease for an apartment today. Thank goodness! This was getting stressful! It's only 5 or so minutes from the hospital and quite nice actually. It's a nice new property, two bedrooms, two baths, furnished, has a pool and a fitness center...lots of good stuff to keep P and Mom occupied. It's also big enough that I don't think I'll want to jump out of a window while living indoors during my 100 days isolation.....maybe? I will not be posting the address here (duh.) but will forward it along to friends, family and work. No creepers here, mmmmkay? Mmmmkay.
Tomorrow's schedule looks a little something like this :
9:00am: Blood Draw (probably a surprise pee test too, sweet!)
10:30 am Business Center Follow-up (gimme 'yo money!)
11:00 am Visit with Dr. de Lima
11:30 am Transplant Coordinator Visit
2:30 pm Bone Marrow Aspiration/ Biopsy (I fucking hate these. There is no way to sugarcoat this. Screwing a hollow needle into my pelvis and sucking out marrow BLOWS. Hopefully I'll get some good meds out of it- what, you think EVERYONE who has had one of these hasn't thought the same thing? Please, save the puritan nonsense for someone who doesn't have a bleeding hole in their hip bone :) )
For those of you who are on FB, you know that I posted about the crazy yoga studio near here that offers the 'yoga facelift'. Yes, I did end up going to class because I just NEEDED to sweat somewhere other than my hotel room. No, my face is not any more lifted, if fact, they didn't do anything involving the face really. There is a really funny story here too, but I'm too damn tired to post it. Let's put it this way, the class was fun, but not in the same way that DYML is fun (or special, or friendly, or warm...shall I go on?). More of a "I can't believe that lady just did that without smearing her makeup and OMG STOP SHOVING MY ARMPITS INTO MY MAT!!!" kind of way. The space was really nice though:)
Thank you dear friends who have called and texted, I don't want you to think that your words are being ignored if I haven't responded, we never expected to be so busy or so tired:( I will make it a point to try to get talk to many of you before going into the hospital, because that is very important. P and I miss home so very much and just want to say how thankful we are for your love, kindness and generosity. All snarkiness aside, thank you and much love to Philly. xo
Saturday, August 14, 2010
MacBooks make very comfortable pillows, FYI
Hey y'all (this is Texas, you know)! I meant to post last night about the appointments and testing I had done yesterday....but then I fell asleep on the computer. Like, awoke this morning and my laptop was open and my pillow was on the keyboard, asleep on the computer.
Sorry:(
Here's a brief recap of the last 24 hours:
Yesterday was a short day for appointments and testing:
10 am Social Worker Visit- We ironed out the documents for my living will and power of attorney. Grossly sobering and sad stuff. Ugh.
11 am EKG, PFT and Echocardiogram. Went swimmingly, I was told I have above average lung strength and a damn healthy heart. The highlight of this appointment was that I had the pleasure of meeting two pretty awesome women, Ninfa and Helen.
Ninfa did my PFT (lung testing) and I believe she was sent from heaven above. This woman, from Mexico City, brought such light and hope into my day, it was necessary to hug her on my way out of the room. She held my hand and told me that she could see in my soul that I was going to be OK. She told me that this is a special place to be, the best place to be, and that she would pray for me. We talked about art and literature and opera. We compared notes on Don Quixote and poetry. She told me about her daughter who is in the Air Force and about where she grew up in Mexico. This woman is a beacon of hope, as are so many in this place. I feel honored to have met her. Thank you Ninfa.
Helen did my Echo and there is no way in hell she got an accurate reading on that damn thing. Why, you ask? Because she had me CRYING with laughter!!! Helen is a Texan, born and raised outside of Houston, with two parents from Louisiana. "Dang Cajuns" according to her. Helen was loud, animated, cursed up a storm and basically made my week. I learned a few valuable things from Helen: what a double cousin is (uh, yeah. that exists), the definition of the term "flatbackin'", not to identify all from Louisiana as Cajuns- only those from a certain county to the coast and only with the right lineage, the word "guido" means nothing here, that one always saves the barbeque in the event of a hurricane, was Shrimp Etouffee is and that one can bribe a FIMA "boy" with it, Buca de Beppo is as close to Italian food as one can get in Texas, not to swim in the water in Galveston and don't eat seafood for three months after a hurricane or tropical depression (always, ALWAYS ask where your seafood is from down here darlin'). She gave me a big bear hug and now I just want to invite her over for beer.
After those appointments, while P was getting the rental car, I indulged in some RAW (RAAAWWWWWWW) veggie sushi. Because I can. For now. So I'm GONNA:) I documented the meal because there is NOTHING else to do. Observe.
Avocado salad roll.
Veggie roll. Yummmmmmm.
om nom nom nom nom
Wash it down with Shiner Bock. BECAUSE I CAN!!! :)
Later last night, P and I went to Goode's Barbeque to gorge ourselves on good ole Texas cookin'. Seriously, if you are ever in Houston, go there. No really, don't argue with me. Go there and order everything. Wear spandex. Drink beer. Sigh deeply. Again, observe:
That would be ribs, brisket, rice and cole slaw. OH, and that there in the top left corner? That pie? Yeah, I'm pretty sure that pie can bring about world peace. That pie is better than any grandma's pie in the nation. Sorry Esposto family, love ya, but this pie is :::GASP::: better than Nana's. Please God don't tell her.
After dinner we tried to go see a movie but Houston is huge, we got lost, yelled at eachother about the iPhone map directions, got a tour of a part of town we won't be returning to and then resigned to parking our BBQ butts in the hot tub. A pretty good night:)
Today was basically just driving around town, checking out the poshest mall ever (uh Ferrigamo, Prada and Chanel much?), snooping on some apartment places and now we're off to inhale some tacos.
I will be honest here and say that P and I are starting to become very homesick now that the reality of being here for so long has begun to set in. We miss our families, friends and kitties and want to say thank you for those of you who have been able to reach out. We love the videos of the cats and the messages, calls and texts. Seriously, keep 'em coming:)!
Much love and thanks:)
Sorry:(
Here's a brief recap of the last 24 hours:
Yesterday was a short day for appointments and testing:
10 am Social Worker Visit- We ironed out the documents for my living will and power of attorney. Grossly sobering and sad stuff. Ugh.
11 am EKG, PFT and Echocardiogram. Went swimmingly, I was told I have above average lung strength and a damn healthy heart. The highlight of this appointment was that I had the pleasure of meeting two pretty awesome women, Ninfa and Helen.
Ninfa did my PFT (lung testing) and I believe she was sent from heaven above. This woman, from Mexico City, brought such light and hope into my day, it was necessary to hug her on my way out of the room. She held my hand and told me that she could see in my soul that I was going to be OK. She told me that this is a special place to be, the best place to be, and that she would pray for me. We talked about art and literature and opera. We compared notes on Don Quixote and poetry. She told me about her daughter who is in the Air Force and about where she grew up in Mexico. This woman is a beacon of hope, as are so many in this place. I feel honored to have met her. Thank you Ninfa.
Helen did my Echo and there is no way in hell she got an accurate reading on that damn thing. Why, you ask? Because she had me CRYING with laughter!!! Helen is a Texan, born and raised outside of Houston, with two parents from Louisiana. "Dang Cajuns" according to her. Helen was loud, animated, cursed up a storm and basically made my week. I learned a few valuable things from Helen: what a double cousin is (uh, yeah. that exists), the definition of the term "flatbackin'", not to identify all from Louisiana as Cajuns- only those from a certain county to the coast and only with the right lineage, the word "guido" means nothing here, that one always saves the barbeque in the event of a hurricane, was Shrimp Etouffee is and that one can bribe a FIMA "boy" with it, Buca de Beppo is as close to Italian food as one can get in Texas, not to swim in the water in Galveston and don't eat seafood for three months after a hurricane or tropical depression (always, ALWAYS ask where your seafood is from down here darlin'). She gave me a big bear hug and now I just want to invite her over for beer.
After those appointments, while P was getting the rental car, I indulged in some RAW (RAAAWWWWWWW) veggie sushi. Because I can. For now. So I'm GONNA:) I documented the meal because there is NOTHING else to do. Observe.
Later last night, P and I went to Goode's Barbeque to gorge ourselves on good ole Texas cookin'. Seriously, if you are ever in Houston, go there. No really, don't argue with me. Go there and order everything. Wear spandex. Drink beer. Sigh deeply. Again, observe:
After dinner we tried to go see a movie but Houston is huge, we got lost, yelled at eachother about the iPhone map directions, got a tour of a part of town we won't be returning to and then resigned to parking our BBQ butts in the hot tub. A pretty good night:)
Today was basically just driving around town, checking out the poshest mall ever (uh Ferrigamo, Prada and Chanel much?), snooping on some apartment places and now we're off to inhale some tacos.
I will be honest here and say that P and I are starting to become very homesick now that the reality of being here for so long has begun to set in. We miss our families, friends and kitties and want to say thank you for those of you who have been able to reach out. We love the videos of the cats and the messages, calls and texts. Seriously, keep 'em coming:)!
Much love and thanks:)
Friday, August 13, 2010
The next person who shoves paper in my eyeballs is getting throat punched.
Today can officially go down in history as the longest string of ridiculous experiences known to.....eh, me. It's a bit poorly written, blame ativan and a SMALL glass of red to help me sleep.
The day was so long (think 7 am appointment to 4:30 pm appointment without a break in between) that I will spare you the minutiae and just post the highlights. So, here's how today went:
7 am blood draw and SURPRISE urine sample (this is a cancer blog, I reserve the right to talk about my pee). I hate when they do this. My mom always taught me to pee before leaving the house and today this habit was my urine sample downfall. Oh well, I'll try harder next time.
8 am- ish CT Scan of the head and neck: I was told to let the tech know that I have a nose ring (read: refused to take it out) so that they wouldn't freak when it showed up on the scan. I tell her, she stares at me, I feel awkward. After the scan, she bursts into the room and yells "DID THAT HURT?!?", I stare at her and shrug and say "Uh yeah, that totally hurt so much"(because I thought she was joking about the scan). Then she starts going on about "Why would you do that to yourself?!" and "It looked like it hurt" and I'm all "WTF". Well, it turns out that when you have in the kind of nose ring that I have (one of those twisty ones that lays flush against the inside of your nose), it looks super crazy on a scan of your noggin'. As in, it looked like the inside of my nose is pierced with a tiny ring. All of the techs and nurses freaked. I felt smug. Also, a lady in the waiting area who had clearly had extensive oral surgery was joking about how beer doesn't taste the same through a syringe to the mouth. You, madame, kick serious ass. Hope you can enjoy a cold brewskie from the bottle soon:)
10 am-ish Ophthamology cluster-fuck. The tech went through your standard eye test stuff: shine this in your eye, read these tiny letter, what color is this and then she chose to say the dumbest thing ever. It sounded something like this: Her "Do you wear glasses?" Me: "Reading glasses from the drug store, mostly for the computer and for reading for long periods of time." Her: "Oh, you're too young for reading glasses dear" Me: ::blink blink headcock:::"Yeah, they told me I was too young for cancer too but, well, that happened" Her: ::blink:::. Seriously lady, stfu (and maybe sorry, I wasnt' allowed to have coffee this morning before this appointment because of the CT). So theeeeeennnnn, she did something that I think violated the Geneva Convention. When you have a BMT, you're eyes are at risk for damage (dryness, blurry sight, etc) due to Graft Versus Host and the chemotherapy. Before transplant they need a baseline for your eye function, including your tear ducts (i.e. how well do you produce tears). How do they do this, you say? Well, they shove strips of paper, just like this little Ph strips you use in a fish tank, IN YOUR FUCKING EYEBALLS. Yes, IN YOUR FUCKING EYEBALLS. Then, you know what? You have to close your FUCKING EYES over the strips, which are shoved under your EYEBALL in your lower lid and HOLD THEM THERE FOR FIVE MINUTES. Oh, and guess what, you do this TWICE. So this lady tells me about the test, and I kind of ignored her when she said it was like torture, just figuring that she was telling me this was going to suck so afterward I didn't think it sucked so much, and then shoves the paper IN MY FUCKING EYES. Then she starts yammering about her kids (I'm really being harsh on this woman, but hell, you would too!) and I (am in a lot of pain) stop her and ask how long I have to have these things in and she says "OH, five minutes. I don't like to tell people that right away". My reaction was to yell "WHAT?!" much louder than I intended to, which thankfully made her laugh. Then I followed that up with a deep gulp because my next instinct is to string together two words that were not Merry Christmas, but this is the south and ladies don't talk like that, or something. Instead? I say "I'm glad you didn't tell me because I would have punched you in the throat!" and then laugh my ass off (this hurt my eyeballs). She did NOT get my....joke. Meh. Then she pulled out the paper, dilated my eyes and shoved those little friggin' strips right back in there. For the rest of the day my eyes were both bright red and so dilated I looked like a nutbag. (On the topic of dilated eyes, this lady also did not appreciate my joke about other more fun ways to get someone's eyes to dilated. NOT THAT I KNOW ANY MOM OR DAD).
1 pm- ish (Opthamology ran over by an hour and a half. FUCKING EYEBALLS) Dr. de Lima and company. We basically just talked about the treatment protocol, clinical trial, side effects to expect and joked about the heat. This guy is freaking awesome. He's like a brilliant muppet. If muppets were from Brazil and could get ride of my cancer. Some of you may know this, if you know me off of the interwebs, but since I got the phone call saying that the donor was on board, that I've had a feeling that the donor is a man. It just comes out "His collection date is...." "He will be...." so today, I just had to ask. You know what? The donor is a man. SO EERIE. A 35 year old man. When I asked where in the world he is, I was told that he is a resident of earth. Ok then. In one year's time I will (if he consents too) be able to give this hero a big, freaking hug. The coordinator informed me that the donor will be giving marrow, not stem cells, to help prevent GVHD (something about the presence of lymphocytes) meaning that this donor is in for one hell of a painful donation. Thank you, donor, I wish I could hug you right now. My word there is good in the world, and it begins with you, sir.
The day ended with a walk (a one mile round trip walk on a skybridge) to one of the other clinics to learn about my catheter which is being inserted next week and an anesthesia pre-admission interview (have you ever died from being knocked out? no? cool.)
P and I ended the day with a dunk in the hot tub downstairs (there is a story there too, some other time) a veggie pizza (because there is NOTHING in the the medical center area. thanks dad:) ), and a glass of wine.
So, dear reader, I have a question for you: Dr. de Lima offered the advice today that I shave my head BEFORE entering the hospital (again, there is a rant here about why I even needed to ask about my hair and if I could wear a bra with my catheter, another day). His point, and I quite like it, is that then it happens on my terms( I just might be a control freak...). It's less "messy" and far less traumatic. I hadn't planned on doing this but I see his point and quite like it. What are your thoughts? I'm thinking that this is a great idea. I'm also thinking that if I do this, I'm TOTALLY posting a video of it. The plan would be to do it next Thursday night, one week from today. Post your thoughts in the comments! kthnx:)
Thank you all again for your love, support, comments, e-mails, text messages and Facebook posts. You sustain us. Keep 'em coming!!
Much love:)
The day was so long (think 7 am appointment to 4:30 pm appointment without a break in between) that I will spare you the minutiae and just post the highlights. So, here's how today went:
7 am blood draw and SURPRISE urine sample (this is a cancer blog, I reserve the right to talk about my pee). I hate when they do this. My mom always taught me to pee before leaving the house and today this habit was my urine sample downfall. Oh well, I'll try harder next time.
8 am- ish CT Scan of the head and neck: I was told to let the tech know that I have a nose ring (read: refused to take it out) so that they wouldn't freak when it showed up on the scan. I tell her, she stares at me, I feel awkward. After the scan, she bursts into the room and yells "DID THAT HURT?!?", I stare at her and shrug and say "Uh yeah, that totally hurt so much"(because I thought she was joking about the scan). Then she starts going on about "Why would you do that to yourself?!" and "It looked like it hurt" and I'm all "WTF". Well, it turns out that when you have in the kind of nose ring that I have (one of those twisty ones that lays flush against the inside of your nose), it looks super crazy on a scan of your noggin'. As in, it looked like the inside of my nose is pierced with a tiny ring. All of the techs and nurses freaked. I felt smug. Also, a lady in the waiting area who had clearly had extensive oral surgery was joking about how beer doesn't taste the same through a syringe to the mouth. You, madame, kick serious ass. Hope you can enjoy a cold brewskie from the bottle soon:)
10 am-ish Ophthamology cluster-fuck. The tech went through your standard eye test stuff: shine this in your eye, read these tiny letter, what color is this and then she chose to say the dumbest thing ever. It sounded something like this: Her "Do you wear glasses?" Me: "Reading glasses from the drug store, mostly for the computer and for reading for long periods of time." Her: "Oh, you're too young for reading glasses dear" Me: ::blink blink headcock:::"Yeah, they told me I was too young for cancer too but, well, that happened" Her: ::blink:::. Seriously lady, stfu (and maybe sorry, I wasnt' allowed to have coffee this morning before this appointment because of the CT). So theeeeeennnnn, she did something that I think violated the Geneva Convention. When you have a BMT, you're eyes are at risk for damage (dryness, blurry sight, etc) due to Graft Versus Host and the chemotherapy. Before transplant they need a baseline for your eye function, including your tear ducts (i.e. how well do you produce tears). How do they do this, you say? Well, they shove strips of paper, just like this little Ph strips you use in a fish tank, IN YOUR FUCKING EYEBALLS. Yes, IN YOUR FUCKING EYEBALLS. Then, you know what? You have to close your FUCKING EYES over the strips, which are shoved under your EYEBALL in your lower lid and HOLD THEM THERE FOR FIVE MINUTES. Oh, and guess what, you do this TWICE. So this lady tells me about the test, and I kind of ignored her when she said it was like torture, just figuring that she was telling me this was going to suck so afterward I didn't think it sucked so much, and then shoves the paper IN MY FUCKING EYES. Then she starts yammering about her kids (I'm really being harsh on this woman, but hell, you would too!) and I (am in a lot of pain) stop her and ask how long I have to have these things in and she says "OH, five minutes. I don't like to tell people that right away". My reaction was to yell "WHAT?!" much louder than I intended to, which thankfully made her laugh. Then I followed that up with a deep gulp because my next instinct is to string together two words that were not Merry Christmas, but this is the south and ladies don't talk like that, or something. Instead? I say "I'm glad you didn't tell me because I would have punched you in the throat!" and then laugh my ass off (this hurt my eyeballs). She did NOT get my....joke. Meh. Then she pulled out the paper, dilated my eyes and shoved those little friggin' strips right back in there. For the rest of the day my eyes were both bright red and so dilated I looked like a nutbag. (On the topic of dilated eyes, this lady also did not appreciate my joke about other more fun ways to get someone's eyes to dilated. NOT THAT I KNOW ANY MOM OR DAD).
1 pm- ish (Opthamology ran over by an hour and a half. FUCKING EYEBALLS) Dr. de Lima and company. We basically just talked about the treatment protocol, clinical trial, side effects to expect and joked about the heat. This guy is freaking awesome. He's like a brilliant muppet. If muppets were from Brazil and could get ride of my cancer. Some of you may know this, if you know me off of the interwebs, but since I got the phone call saying that the donor was on board, that I've had a feeling that the donor is a man. It just comes out "His collection date is...." "He will be...." so today, I just had to ask. You know what? The donor is a man. SO EERIE. A 35 year old man. When I asked where in the world he is, I was told that he is a resident of earth. Ok then. In one year's time I will (if he consents too) be able to give this hero a big, freaking hug. The coordinator informed me that the donor will be giving marrow, not stem cells, to help prevent GVHD (something about the presence of lymphocytes) meaning that this donor is in for one hell of a painful donation. Thank you, donor, I wish I could hug you right now. My word there is good in the world, and it begins with you, sir.
The day ended with a walk (a one mile round trip walk on a skybridge) to one of the other clinics to learn about my catheter which is being inserted next week and an anesthesia pre-admission interview (have you ever died from being knocked out? no? cool.)
P and I ended the day with a dunk in the hot tub downstairs (there is a story there too, some other time) a veggie pizza (because there is NOTHING in the the medical center area. thanks dad:) ), and a glass of wine.
So, dear reader, I have a question for you: Dr. de Lima offered the advice today that I shave my head BEFORE entering the hospital (again, there is a rant here about why I even needed to ask about my hair and if I could wear a bra with my catheter, another day). His point, and I quite like it, is that then it happens on my terms( I just might be a control freak...). It's less "messy" and far less traumatic. I hadn't planned on doing this but I see his point and quite like it. What are your thoughts? I'm thinking that this is a great idea. I'm also thinking that if I do this, I'm TOTALLY posting a video of it. The plan would be to do it next Thursday night, one week from today. Post your thoughts in the comments! kthnx:)
Thank you all again for your love, support, comments, e-mails, text messages and Facebook posts. You sustain us. Keep 'em coming!!
Much love:)
Wednesday, August 11, 2010
Hey-yo Houston
We're here, whether we like it or not, we're here!
Here's how today went:
Manically packed because we were both in denial and frankly couldn't stand to do it until the last minute. Here's my mess from this morning:
Several months worth of clothing in one suitcase? Talk about an exercise in determining need. Oy.
We rushed off to the airport and away we went, attitude and all:
Yes, please note the black hair and nerdy reading glasses...:)
We arrived at our hotel a touch after 6:30 pm. This place is wonderful, I must say. It is attached via "sky bridge" to MDA's main building, meaning that that 7 am appointment is going to suck that much less. The room is comfortable, there's a bar and restaurant in the place (we have obs. already sampled the bar...and I gorged on the raw veggies in the restaurant...dude, I won't be able to eat 'em for awhile, gotta live it up now!) and, best of all, there's a freaking pool and jacuzzi downstairs calling my name.
Philly, meet MD Anderson via our hotel room window:
For tonight, we're laying low and relaxing, tomorrow is a busy day. It is gonna look a little something like this:
7:00 am Blood Draw
7:30 am Chest X-Ray
8:10 am Prep for CT Scan
8:40 am CT Scan Head/Neck (this means no breakfast)
9:45 am Ophthalmology Appointment
11:00 am Research Coordinator visit, Stem Cell Transplant Unit
11:30 am Appointment with Dr. De Lima
1:00 pm ITT Pre-Procedure Assessment- Transfusion Center
3:15 pm Anesthesia Assessment Center Check-in
3:30 pm Anesthesia Assessment for OR (this is for my port placement next week)
It makes me grumpy just looking at this. Drinks will be had tomorrow night, FOR SURE.
I will tell you that today has been an emotional one. It all seems like a blur, however, there was one moment of clarity. As we were traveling from the airport to the hotel via an airport shuttle, I spotted the 'Welcome to Houston' sign. I suddenly felt eerily calm, like I just knew I was going to be OK. That must seem stupid, maybe it is psychological, but it just felt right. This feels right.
In other weirdness, when my brother dropped us off at the airport in Philly, the darn craziest thing happened, something that I have chosen to take as a good omen. As we were unloading our bags from my brother's car, I look up and there, walking past us at that very moment, is an old acquaintance from high school. Not being able to control myself, I blurted out "Brian!?!?!" and he turned and gave the biggest smile. Turns out, he was heading to a wedding in Boston at that very moment. He gave me a big hug, which I am quite fond of these days, and went on his merry way. What are the freaking odds?
I will try to post updates daily on here, it helps to feel connected to you folks at home. Thank you for your messages of comfort, reassurance and friendship. Keep 'em coming:) Though I may not respond right away, rest assured that your words have been received and have uplifted. :)
Much love!!!
Here's how today went:
Manically packed because we were both in denial and frankly couldn't stand to do it until the last minute. Here's my mess from this morning:
Several months worth of clothing in one suitcase? Talk about an exercise in determining need. Oy.
We rushed off to the airport and away we went, attitude and all:
Yes, please note the black hair and nerdy reading glasses...:)
We arrived at our hotel a touch after 6:30 pm. This place is wonderful, I must say. It is attached via "sky bridge" to MDA's main building, meaning that that 7 am appointment is going to suck that much less. The room is comfortable, there's a bar and restaurant in the place (we have obs. already sampled the bar...and I gorged on the raw veggies in the restaurant...dude, I won't be able to eat 'em for awhile, gotta live it up now!) and, best of all, there's a freaking pool and jacuzzi downstairs calling my name.
Philly, meet MD Anderson via our hotel room window:
For tonight, we're laying low and relaxing, tomorrow is a busy day. It is gonna look a little something like this:
7:00 am Blood Draw
7:30 am Chest X-Ray
8:10 am Prep for CT Scan
8:40 am CT Scan Head/Neck (this means no breakfast)
9:45 am Ophthalmology Appointment
11:00 am Research Coordinator visit, Stem Cell Transplant Unit
11:30 am Appointment with Dr. De Lima
1:00 pm ITT Pre-Procedure Assessment- Transfusion Center
3:15 pm Anesthesia Assessment Center Check-in
3:30 pm Anesthesia Assessment for OR (this is for my port placement next week)
It makes me grumpy just looking at this. Drinks will be had tomorrow night, FOR SURE.
I will tell you that today has been an emotional one. It all seems like a blur, however, there was one moment of clarity. As we were traveling from the airport to the hotel via an airport shuttle, I spotted the 'Welcome to Houston' sign. I suddenly felt eerily calm, like I just knew I was going to be OK. That must seem stupid, maybe it is psychological, but it just felt right. This feels right.
In other weirdness, when my brother dropped us off at the airport in Philly, the darn craziest thing happened, something that I have chosen to take as a good omen. As we were unloading our bags from my brother's car, I look up and there, walking past us at that very moment, is an old acquaintance from high school. Not being able to control myself, I blurted out "Brian!?!?!" and he turned and gave the biggest smile. Turns out, he was heading to a wedding in Boston at that very moment. He gave me a big hug, which I am quite fond of these days, and went on his merry way. What are the freaking odds?
I will try to post updates daily on here, it helps to feel connected to you folks at home. Thank you for your messages of comfort, reassurance and friendship. Keep 'em coming:) Though I may not respond right away, rest assured that your words have been received and have uplifted. :)
Much love!!!
Go time
So, please forgive me if this post lacks my normal banter or becomes garbled, I'm effing exausted and my thoughts are stuck on stupid. Here is the deal:
P and I leave tomorrow (Wednesday) for Houston. Our flight departs Philadelphia at 2:20 pm which will put us in Houston sometime around 5:30 pm Central Time (oh yeah, FYI, there is a one hour time difference between here and there).
We do not have an apartment settled yet so we will be staying at the hotel attached to MDA until we get an apartment (we are on lots of waiting lists) or until I get admitted, whichever comes first.
Beginning on Thursday I will post my daily appointment schedule (because that's interesting and stuff) and anything that I have to say about that. Meh.
In other news, we have spent the last week or so spending tons of time with dear family, friends and each other. If I may take a moment to get sappy, after spending these last precious days with those that we love and care about most, I cannot understand how anyone can become a cynic. There is so much good in others, so much love to be shared, so much caring and generosity in the world.
This morning was the last yoga class that I will be able to attend for some time. On my walk home from class I composed a whole entry about it. And cried. My god did I cry. Savasana to doorstep tears. By the time I got home I was such a wreck that I couldn't bring myself to write about it. I am trying to remember the words that I wrote in those moments, because they were good, but all I can seem to come up with right now is this:
This practice of yoga, this discipline, this dedication, this education has shaped my life in a more profound way than some bonkers white blood cells ever could. It has made my body strong, my breath deep, my friendships lifelong and shining, my mind clear and my spirit fulfilled. The people, this kula, have provided a home, a shelter, a glorious support (and the best damn hugs ever). This is not goodbye, not even for a little while. This is not a thing to mourn, though it is tempting. It is a time to be full of gratitude for these things and feel steady in the support and knowledge that yoga is not just in the asana. All of that sounds very flowery and nice, very profound, but those tears still fell. They settled on my mat and will remain there to greet me again when I come back. When I come home.
For now, I'm going to continue saying goodbye (or see you in a little while) to my friends and some family, cuddle these cats and finish packing. Will update in the AM.
Night y'all :)
P and I leave tomorrow (Wednesday) for Houston. Our flight departs Philadelphia at 2:20 pm which will put us in Houston sometime around 5:30 pm Central Time (oh yeah, FYI, there is a one hour time difference between here and there).
We do not have an apartment settled yet so we will be staying at the hotel attached to MDA until we get an apartment (we are on lots of waiting lists) or until I get admitted, whichever comes first.
Beginning on Thursday I will post my daily appointment schedule (because that's interesting and stuff) and anything that I have to say about that. Meh.
In other news, we have spent the last week or so spending tons of time with dear family, friends and each other. If I may take a moment to get sappy, after spending these last precious days with those that we love and care about most, I cannot understand how anyone can become a cynic. There is so much good in others, so much love to be shared, so much caring and generosity in the world.
This morning was the last yoga class that I will be able to attend for some time. On my walk home from class I composed a whole entry about it. And cried. My god did I cry. Savasana to doorstep tears. By the time I got home I was such a wreck that I couldn't bring myself to write about it. I am trying to remember the words that I wrote in those moments, because they were good, but all I can seem to come up with right now is this:
This practice of yoga, this discipline, this dedication, this education has shaped my life in a more profound way than some bonkers white blood cells ever could. It has made my body strong, my breath deep, my friendships lifelong and shining, my mind clear and my spirit fulfilled. The people, this kula, have provided a home, a shelter, a glorious support (and the best damn hugs ever). This is not goodbye, not even for a little while. This is not a thing to mourn, though it is tempting. It is a time to be full of gratitude for these things and feel steady in the support and knowledge that yoga is not just in the asana. All of that sounds very flowery and nice, very profound, but those tears still fell. They settled on my mat and will remain there to greet me again when I come back. When I come home.
For now, I'm going to continue saying goodbye (or see you in a little while) to my friends and some family, cuddle these cats and finish packing. Will update in the AM.
Night y'all :)
Subscribe to:
Posts (Atom)