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
Monday, August 16, 2010
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 :)
Saturday, August 7, 2010
On why my sister is an inspiration and also needs a cheeseburger.
This post is in full dedication to my dear sister Liz because, well, she kicks some major ass. If you speak fluent drum corps, then you will understand this post, if not, get yo'self to the googlemachine ASAP and look it up (or www.dci.org). You won't regret it.
This is my gorgeous sister Liz:
Isn't she flippin' beautiful? Liz has been on tour with Phantom Regiment Drum and Bugle Corps since May. (I'll allow a moment for you to go to that website and be thoroughly impressed. We good? K). This means that she has done the following things: worked her tail off to earn enough money to pay her tour fees (yes, the corps members PAY in the thousands of dollars to do this) while a full time student, flown all over hell and back to audition (Illinois and a few weekends in the Carolinas that we don't really talk about), slept on gym floors, in buses, hallways, on benches, in planes and basically anywhere that isn't a bed, rehearsed outdoors in extreme heat, wind, sun, rain ... every weather condition that would make a sane person plant themselves indoors, been away from her friends, family and boyfriend for months at a time, lost about a kajillion pounds (this would be why she needs a cheeseburger), been injured, been stressed, performed in stadiums in front of thousands of people...shall I go on? Ok, you get the picture.
Here is a video I found of a recent performance (shhhhhh don't tell DCI...they like to be able to sell their DVDs). If the stadium looks empty, it's not. They only seat on one side for performances. Anyway, no one wants to see a bunch of asses in wool uniforms, their faces are so much prettier:).
Here's a clip from close to the field for a better view of what she does. I think she's even in the back in this video for a split second:
Liz marched for several summers before this with another corps, however, that corps was what is known as a "weekend corps" meaning that she spent her weekends and a few weeks at the beginning and end of summer on tour. Phantom is not a weekend corps. She has been gone since mid-May and will be off with them until finals are over next weekend. Because of the length of her tour and all of my transplant crap, she and I were under the impression that I would not be able to see her perform this summer and would not get to see her in person until this winter at the earliest. A thought that made me sad beyond measure, not just because I love my sister and am so freaking proud of her, but because I am (and have been for.....uh, fifteen years...) a major drum corps nerd.
Welllllll, thanks to the later date that my donor chose (seriously donor, you fucking rock in so many ways), P and I were able to make it up to West Chester to see her perform on Thursday night. There are no words for how effing happy we were about this. None. Watching her take the field and pour her everloving heart out doing something she loves, something that is hard, something that many people don't even understand and doing it beautifully, was one of the coolest moments ever. Their show was gorgeous. The best part of the night though was being able to see her for a few moments after the show and before they took off on their tour bus for the next rehearsal site. Gave her a big ol' hug. It was awesome.
Like I said, in addition to wanting to see Liz, I just freaking love drum corps. P and I have gone to shows every summer since we met, we even drove to Rhode Island a few summers ago for finals (and geeked out buying the pricier tickets so we could get the best view). In middle school, when I discovered DCI, I obsessed over their PBS special. In high school, I dreamed of marching drum corps but alas, my hand-eye coordination is sub-par at best and I played the freaking piccolo in high school marching band (NOT an instrument that has ever, or will ever, be a brass instrument). Watching Liz these past few summers grow as a performer and as an adult has been amazing. Seeing her work her tail off to march this summer has been inspirational to say the least. She is doing what every young person should do, what every kid on that field is doing. That thing your guidance counselor (and every nerdy poster in every classroom in history) always told you to do: follow your heart, work hard and dream big.
Liz, if you are reading this (and if you are, please go to bed right after, you need your rest), I just want to tell you how proud I am of you. You are tenacious, talented, amazing at what you do and so beautiful. Please go kick ass in Indy, we will be there in spirit. I can't wait to come to your age-out next summer. Love you sis. Get it.
This is my gorgeous sister Liz:
Here is a video I found of a recent performance (shhhhhh don't tell DCI...they like to be able to sell their DVDs). If the stadium looks empty, it's not. They only seat on one side for performances. Anyway, no one wants to see a bunch of asses in wool uniforms, their faces are so much prettier:).
Here's a clip from close to the field for a better view of what she does. I think she's even in the back in this video for a split second:
Liz marched for several summers before this with another corps, however, that corps was what is known as a "weekend corps" meaning that she spent her weekends and a few weeks at the beginning and end of summer on tour. Phantom is not a weekend corps. She has been gone since mid-May and will be off with them until finals are over next weekend. Because of the length of her tour and all of my transplant crap, she and I were under the impression that I would not be able to see her perform this summer and would not get to see her in person until this winter at the earliest. A thought that made me sad beyond measure, not just because I love my sister and am so freaking proud of her, but because I am (and have been for.....uh, fifteen years...) a major drum corps nerd.
Welllllll, thanks to the later date that my donor chose (seriously donor, you fucking rock in so many ways), P and I were able to make it up to West Chester to see her perform on Thursday night. There are no words for how effing happy we were about this. None. Watching her take the field and pour her everloving heart out doing something she loves, something that is hard, something that many people don't even understand and doing it beautifully, was one of the coolest moments ever. Their show was gorgeous. The best part of the night though was being able to see her for a few moments after the show and before they took off on their tour bus for the next rehearsal site. Gave her a big ol' hug. It was awesome.
Like I said, in addition to wanting to see Liz, I just freaking love drum corps. P and I have gone to shows every summer since we met, we even drove to Rhode Island a few summers ago for finals (and geeked out buying the pricier tickets so we could get the best view). In middle school, when I discovered DCI, I obsessed over their PBS special. In high school, I dreamed of marching drum corps but alas, my hand-eye coordination is sub-par at best and I played the freaking piccolo in high school marching band (NOT an instrument that has ever, or will ever, be a brass instrument). Watching Liz these past few summers grow as a performer and as an adult has been amazing. Seeing her work her tail off to march this summer has been inspirational to say the least. She is doing what every young person should do, what every kid on that field is doing. That thing your guidance counselor (and every nerdy poster in every classroom in history) always told you to do: follow your heart, work hard and dream big.
Liz, if you are reading this (and if you are, please go to bed right after, you need your rest), I just want to tell you how proud I am of you. You are tenacious, talented, amazing at what you do and so beautiful. Please go kick ass in Indy, we will be there in spirit. I can't wait to come to your age-out next summer. Love you sis. Get it.
Wednesday, August 4, 2010
Thank you Cancer
This post was born in the early evening tonight while on a beautiful summer evening drive home with P. I was overwhelmed with thankfulness and thank you notes are very important you know.
Thank you cancer, for all that you have done for me.
Thank you for helping me understand love.
Thank you for showing me that while I often feel meek, ferocity lives in me.
Thank you for testing me and demanding that I pass.
Thank you for making me savor every moment, the perfect and the imperfect.
Thank you for giving me something to live up to.
Thank you for making me let go.
Thank you for reminding me why I practice.
Thank you for not allowing me to be frivolous.
Thank you for allowing me to grow deep roots in my marriage.
Thank you for giving me the ability to set goals. Twenty year goals.
Thank you for opening my eyes to the goodness that lives in those around me.
Thank you for filling my life with those that I am in awe of. They are the greatest blessing.
Thank you for requiring honest gratitude, appreciation and thankfulness.
Thank you for making me get my priorities in order.
Thank you for giving me the humility to say yes.
Thank you for giving me the strength to say no.
Thank you for opening my eyes to the elegance and beauty of the world around me, and in me.
Thank you for forcing me to evaluate how I interact with those most important in my life.
Thank you for the opportunity to begin to grow.
Thank you, Cancer, for everything. Now kindly fuck off.
Thank you cancer, for all that you have done for me.
Thank you for helping me understand love.
Thank you for showing me that while I often feel meek, ferocity lives in me.
Thank you for testing me and demanding that I pass.
Thank you for making me savor every moment, the perfect and the imperfect.
Thank you for giving me something to live up to.
Thank you for making me let go.
Thank you for reminding me why I practice.
Thank you for not allowing me to be frivolous.
Thank you for allowing me to grow deep roots in my marriage.
Thank you for giving me the ability to set goals. Twenty year goals.
Thank you for opening my eyes to the goodness that lives in those around me.
Thank you for filling my life with those that I am in awe of. They are the greatest blessing.
Thank you for requiring honest gratitude, appreciation and thankfulness.
Thank you for making me get my priorities in order.
Thank you for giving me the humility to say yes.
Thank you for giving me the strength to say no.
Thank you for opening my eyes to the elegance and beauty of the world around me, and in me.
Thank you for forcing me to evaluate how I interact with those most important in my life.
Thank you for the opportunity to begin to grow.
Thank you, Cancer, for everything. Now kindly fuck off.
Subscribe to:
Posts (Atom)