I missed writing yesterday, so I'm writing on the nose of Day 3. Basically, Day 2 sucked. If Allison wasn't here I would have lost it altogether. It seems I get every achy side-effect known to women. Sometimes...I just don't feel like being in pain. So, as much, Attavan (for itching and nausea), Benedryl (for itching and sleoing) and Dilauded (for pain) that I can beg out of the nurses, the better. Unfortunate, all these drugs which are meant to help with all these sympoms, also make me hallucinatate.
For days, the little valvles and pins hooked on and dancing around the hospital gown i have been wearing, make it much eaiser for me to FaceTime over the phone with Ari. His team has all the regulars (0B1, Luke and Laura) mine get to be much goofier ( Babyoda, Baby Darth Maul and Baby Bobba Feat).I have know idea of what anyone means, but it's much easier to play...)
The Advent Count-Up Calander From Day +2 reads:
"Do Your Dance, Little Babies."
Monday, 24 September 2012
Saturday, 22 September 2012
Day 1
A little out of sorts all day. A bit tired, a bit achy a bit apprehensive. It's a day of shifting. I've been in warrior mode for three years now. And my new gorgeous cells are now in and my job has changed. It's changed to acceptance and self-care. It's a real 180 from where I've been at. New cells, I promise to love, honor and surround you with kindness and god's light. I thank you so much for matching me, for becoming part of me. I'm eternally grateful that we have found each other. I thank your mommy, my gorgeous, brave, generous, kind, kick-ass donor, every day. I just know her bottom is hurting.
Friday, 21 September 2012
DAY ZERO! My Garden Has Been Planted!
Wow. Such an emotional day. Up earlier than ever. Waiting till 6:00pm for the transplant to begin. The tick-tock of the clock was really loud. Then Andrea stopped by and brought this extremely witty chocolate mousse cake that I can't eat because it was store bought. But boy, does it ever look clever and yummy to me...!
"Let's Cell-ebrate" I love that kind of stuff. I mean, what are words made for??? Andy and I looked at it very lovingly and tucked it in the fridge. Maybe freeze it till the kids can get here and they can dig in...
5:30 finally arrived, I was given the pre-medications for the transplant. They made me so super tired that I feel like I slept through so much of it! It was four hours long, just a drip/ drop into me. But they were, plainly, a gift from a generous soul somewhere in this great world. Donor, it is my giant hope, that your rump doesn't hurt too much today. I hope you have many people who love you and surround you in many ways. It' no doubt you do. You deserve it! Please please include me in that circle.
So, here are the cells. They're a gorgeous color. The doctor said she thought they looked really juicy.
And now, after all this work and fighting to be here, my job has changed. It has now become one where I allow. Allow healing to begin, occur, flourish, do what it does best. When it comes down to this miracle stuff, all I can do is be grateful and allow...
The last mind-blowing gift of the day is my glowing brand new Advent calender made by the overly talented, underly appreciated Allison. I said, "we need a calendar like the one's Christians ride in toward Christmas on. She pulled out her saddle and two days later handed me the funniest, sweetest, most gleeful calendar fit for any child, any person, in this whole world. The first day says,
"Welcome to the world, little itsy bitsy cells. You will love your new home..."
The last mind-blowing gift of the day is my glowing brand new Advent calender made by the overly talented, underly appreciated Allison. I said, "we need a calendar like the one's Christians ride in toward Christmas on. She pulled out her saddle and two days later handed me the funniest, sweetest, most gleeful calendar fit for any child, any person, in this whole world. The first day says,
"Welcome to the world, little itsy bitsy cells. You will love your new home..."
They're Here!
Da Cells R In Da House!
I couldn't sleep very well last night because I kept waking up wondering if they'd arrived. And just now, this morning, it's official. I've been told, they're here. They're in the lab being processed and I can hardly believe it. I'm in the same building as my new cells! All I can think about now is my fabulous, generous donor and what a beautiful spirit she is. Thank you Thank you Thank you for making this work. For being there for me. For humanity.
I also can not stop thinking about this life. Mine. And how it will be elongated. How I'll get to see many Springs and Summers, and graduations and weddings. Skinned knees, successes, and even more important, reasons to keep trying. I have the opportunity to continue encouraging my kids, my husband, my friends, myself. This is a dream come true.
Apparently, the cells won't go in until later today. So the suspense is very edge of my seat. The clock is ticking rather slowly today I must admit.
I have to thank Dr. Martin Tallman and Dr. Sergio Giralt once again (and this won't be the last) for scooping me up. For believing in themselves that they could do this and that I could do this, when others didn't. It's clear proof in this life that you should never stop searching for the right answers and the right people for you. As Ari says, "Never Give Up Mama, Never Give Up." I won't baby. I promise.
I couldn't sleep very well last night because I kept waking up wondering if they'd arrived. And just now, this morning, it's official. I've been told, they're here. They're in the lab being processed and I can hardly believe it. I'm in the same building as my new cells! All I can think about now is my fabulous, generous donor and what a beautiful spirit she is. Thank you Thank you Thank you for making this work. For being there for me. For humanity.
I also can not stop thinking about this life. Mine. And how it will be elongated. How I'll get to see many Springs and Summers, and graduations and weddings. Skinned knees, successes, and even more important, reasons to keep trying. I have the opportunity to continue encouraging my kids, my husband, my friends, myself. This is a dream come true.
Apparently, the cells won't go in until later today. So the suspense is very edge of my seat. The clock is ticking rather slowly today I must admit.
I have to thank Dr. Martin Tallman and Dr. Sergio Giralt once again (and this won't be the last) for scooping me up. For believing in themselves that they could do this and that I could do this, when others didn't. It's clear proof in this life that you should never stop searching for the right answers and the right people for you. As Ari says, "Never Give Up Mama, Never Give Up." I won't baby. I promise.
Thursday, 20 September 2012
The Night Before
Arpiné, my in-house photographer, took this of me this evening. She came by with Andrew and it's ALWAYS so nice to see them. I'm not usually fond of putting "hospital-ly" pictures of myself on the blog, or on facebook, or anywhere, because I still don't relate to being sick. Often, I still can't believe it's me. But this picture captures a lot. Waiting, excited, patient, calm, appreciative, nervous, glad to be here, the night before. I realize that this transplant is happening. And even though I feel as well as I do, I KNOW I need this transplant!
I'm wearing only pillows in this picture because of an allergic reaction I had to two medicines. One is an anti-biotic that makes me feel itchy itchy itchy all over. The other is Tacrolimus. This is an important one. It's the anti-rejection drug. But it makes me feel like I'm heating up on the inside. My actual brain felt hot! So they're taking that down a few notches. I offered to duke it out, considering I'd rather heat up inside than reject my new stem-cells, but they're very focused on finding the balance between efficiency and comfort here.
They said that the cells will go in later tomorrow. I think they have to go through some rigorous checks at the lab. I asked if the cells were already here, but the lab had already closed for today. Nurse Practitioner said no news is good news. So I'll stick with that story.
Right now I don't really know what else to say! It's been such a long haul. And it's happening. My original title for this blog, "To100DaysandBeyond" is actually starting! Tomorrow. Tomorrow is day 0, and then we count up to 100 and I should be feeling much better by then. Much less tired. In my sloppy calendar counting, it seems like December 29 will be day 100. I don't really know what to expect in these 100 days, except one thing: no more Leukemia. Thank you very much. I'm rather done.
As I sit here, I just feel like remembering some of the great things I've done in my life so far. Funnily, the first one that springs to my mind was this thirteen-mile walk Andy and I did from the Cape Canaveral National Seashore back to New Symrna Beach, collecting fabulous conch shells along the way. I don't think my feet ever hurt more, walking on sand juggling 4 shells like that, but it was so worth it.
The second that comes to mind is, of course, having children. My goodness, the persistence it took. Plowing through and yet also emotionally processing seven miscarriages to have them... Maybe the underlying similarities here are that our best accomplishments and successes often come with grueling beginnings.
What about the first time I ever taught English as a Second Language to garment union workers in New York? As I was walking to work, up 6th Avenue, I had the hugest anxiety attack. I had never had one before, and hardly one since. But I kept walking, tears uncontrolled and streaming down my face, and I went taught that class. As it turned out, it was the most fun, most rewarding beginning to a great career in that field.
Another great thing was learning to teach yoga. In fact, my first real dedicated encounter with the Intergral Yoga Institue was when I signed up for a retreat in Yogaville in Virginia. I just signed-up and didn't really read the fine print... I took a plane and a train to get there and then a Swami in burnt orange clothes kindly picked me up at the train station and brought me back to the ashram. The whole time in the car I am talking-talking-talking. Asking her all about herself, what's it like to live in a spiritual community, how's their relationship with the town outside the ashram? I'm interviewing. I will often do this just because I like to know about people. But as we start rollling up to the Ashram, she said to me, "You know, this is a silent retreat?". Wow, it was the first I've heard of that! It hit me like a brick. That's what I missed not reading the fine print... "What's that?" I asked. I soon learned that it was a four-day retreat where you only listen. You don't talk at all, to anyone at any time. If you have a question, you write it down in a note and hand it to someone at the approprite moment.
I had no idea how I was going to make it through the weekend. Nor could I see any value in not talking for so long. But after the major difficulty of keeping my mouth shut and getting through day one, it became really interesting. The first thing I noticed was how much I project onto people. Just by looks alone, I thought I could surmise whether a couple was married, happy, what they did for a living and where they lived. By day two, I cared less about that because I was completely grappling with holding my tongue and not interjecting every thought I ever had, every minute of everyday, into every conversation I ever had or overheard. It was so difficult! But, I learned, in fact, that if I didn't always introject my every opinion, I still existed and the world continued on. What a relief! After that, I went on to take many different yoga classes and trainings, and I have had the pleasure of teaching yoga to all kinds of people, from ages 0 to 85.
I guess I'm saying the most rewarding things can come out of the most grueling tests. It actually lessens my anxiety about the transplant. It may be hard, but hard is not always bad.
Wednesday, 19 September 2012
Wars and Gardens
It's late Wednesday night. 11:30pm EST. It's 4:30am GMT. My family lives in a different time zone. It's crazy. And Andy straddled a time zone tonight coming here to be with me for the transplant. I feel almost like it's OUR transplant. For me, my family and for anyone and everyone who has been with me, supporting me, fighting with me, tooth and nail, for this day to come.
I never really liked the expression of "battling" cancer. I don't know why. Maybe because it's such an unusual enemy. It's more like guerrilla warfare. It's definitely not the "Don't fire until you see the whites of their eyes", type of war. That would be really stupid. Worst war strategy ever.
Dr. Giralt keeps using baseball analogies. "We're going to get as close to the fence and then hit it out of the stadium." (Although when does that happen in baseball?)
Getting close to the fence for him, I presume, is a whopping amount of chemo, so when the cells go in, they have a nice clean place to start off. My bones will then suck them in and the cells will know to go in! They will all know to coalesce.
Doctors don't understand some of this unusual, unexplained cell behavior, but they trust enough to include them in their protocols. Who knew that the first stem transplant in 1968 would have led to a cure for Leukemia? The doctors took a chance that the cells would build cells. It is amazing how often the metaphor, "It's like planting a garden", comes up among doctors and nurses. And does anyone really know why a garden grows? "It's magic, it's God." I'm quoting doctors here.
I never really liked the expression of "battling" cancer. I don't know why. Maybe because it's such an unusual enemy. It's more like guerrilla warfare. It's definitely not the "Don't fire until you see the whites of their eyes", type of war. That would be really stupid. Worst war strategy ever.
Dr. Giralt keeps using baseball analogies. "We're going to get as close to the fence and then hit it out of the stadium." (Although when does that happen in baseball?)
Getting close to the fence for him, I presume, is a whopping amount of chemo, so when the cells go in, they have a nice clean place to start off. My bones will then suck them in and the cells will know to go in! They will all know to coalesce.
Doctors don't understand some of this unusual, unexplained cell behavior, but they trust enough to include them in their protocols. Who knew that the first stem transplant in 1968 would have led to a cure for Leukemia? The doctors took a chance that the cells would build cells. It is amazing how often the metaphor, "It's like planting a garden", comes up among doctors and nurses. And does anyone really know why a garden grows? "It's magic, it's God." I'm quoting doctors here.
Tuesday, 18 September 2012
"It's Alright to Cry"-- Rosie Grier
I realized today that Andy is really the only one that I really blubber too. He gets on the phone with me and the waterworks just start. As a caregiver, I'll bet it skews his picture of how I'm really doing. I know he knows I'm strong, and that waterworks in no way means someone isn't strong, but his shirts have soaked up a lot of my tears for sure...
This morning I woke up and I was feeling really tired and I stayed in the bed longer than I normally would. I find the mornings can be hard. I miss the days when I cooked breakfast and I took the kids to school. When you're a mom and you don't have that on your list for the day, it can feel pretty rotten. So I was a little gloomy, checking yesterday's crossword puzzle against today's answers when Andrea walked in, decked out in "Early Morning Mom" attire and it made me feel inspired. Like, I can do that again...
She brought me a bunch of button-downs she and Katie bought for me yesterday at Target. I looked at her and realized she's been with me the whole time through this. We lived in Chicago together when I was diagnosed. She came to London to be with me this summer and now she lives in New York and we're together again. Some of my favorite memories with Andrea were before any of this happened and we'd go to prenatal yoga together at Exhale. We'd do our best to kick butt and also relax a bit in those classes. After, we'd walk out together and people would stop us and tell us how cute we were together and how cute our bellies were.
It hit me today, that that was a time when I felt pretty confident of my mind/body connection. And after having Leukemia, that confidence has been so undermined. Right now I am completely giving my body over to science. Doctors are completely controlling my immune system. I feel my part is to always inform them of this thing or that, big or little, that I feel might be occurring or changing in my body. But mostly, my body is theirs to do with what they will. It's a feeling of a lack of control. And then the tears came.
I am scared and happy and confused. But I was glad that I could get a good cry out with Andrea, and the nurse here. They were extremely helpful and loving and Andrea was relentless in expressing her extreme confidence in me and my doctors. They both said I should take a rest and tucked me in. But when they left, I felt so much better, I opened the shade, had breakfast, did some exercising with the PT guy and so on. It was like night and day between maybe not crying and holding all that in, and crying and feeling so much better. I moved forward through this a bit. One more day completed.
I took my two "bronzing" prevention showers today. Tomorrow I start the last drug. Again, I'm too lazy to get up and find the name of it (maybe it's not that I'm lazy, it's just that I'm so tied-up and plugged-in it makes quick and spontaneous movement completely impossible. (You don't say things like, "I'll be right back" in this situation.) With this new medication, I'll chew ice chips for 1.5 hours while it's going in. It's to constrict the blood vessels in my mouth and throat to help prevent mouth sores. And this is fine with me because they have the greatest ice chips here. They're kind of pellet-y and christalize-y. I've become a real connoisseur.
This morning I woke up and I was feeling really tired and I stayed in the bed longer than I normally would. I find the mornings can be hard. I miss the days when I cooked breakfast and I took the kids to school. When you're a mom and you don't have that on your list for the day, it can feel pretty rotten. So I was a little gloomy, checking yesterday's crossword puzzle against today's answers when Andrea walked in, decked out in "Early Morning Mom" attire and it made me feel inspired. Like, I can do that again...
She brought me a bunch of button-downs she and Katie bought for me yesterday at Target. I looked at her and realized she's been with me the whole time through this. We lived in Chicago together when I was diagnosed. She came to London to be with me this summer and now she lives in New York and we're together again. Some of my favorite memories with Andrea were before any of this happened and we'd go to prenatal yoga together at Exhale. We'd do our best to kick butt and also relax a bit in those classes. After, we'd walk out together and people would stop us and tell us how cute we were together and how cute our bellies were.
It hit me today, that that was a time when I felt pretty confident of my mind/body connection. And after having Leukemia, that confidence has been so undermined. Right now I am completely giving my body over to science. Doctors are completely controlling my immune system. I feel my part is to always inform them of this thing or that, big or little, that I feel might be occurring or changing in my body. But mostly, my body is theirs to do with what they will. It's a feeling of a lack of control. And then the tears came.
I am scared and happy and confused. But I was glad that I could get a good cry out with Andrea, and the nurse here. They were extremely helpful and loving and Andrea was relentless in expressing her extreme confidence in me and my doctors. They both said I should take a rest and tucked me in. But when they left, I felt so much better, I opened the shade, had breakfast, did some exercising with the PT guy and so on. It was like night and day between maybe not crying and holding all that in, and crying and feeling so much better. I moved forward through this a bit. One more day completed.
I took my two "bronzing" prevention showers today. Tomorrow I start the last drug. Again, I'm too lazy to get up and find the name of it (maybe it's not that I'm lazy, it's just that I'm so tied-up and plugged-in it makes quick and spontaneous movement completely impossible. (You don't say things like, "I'll be right back" in this situation.) With this new medication, I'll chew ice chips for 1.5 hours while it's going in. It's to constrict the blood vessels in my mouth and throat to help prevent mouth sores. And this is fine with me because they have the greatest ice chips here. They're kind of pellet-y and christalize-y. I've become a real connoisseur.
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