The original reason behind this blog was so that I could write about the first 100 days after transplant. And now that I'm finally post transplant and I can't figure out what day it is! Or month? I have this "as needed for pain button" on my thingymahooji (that all the medical drips hang from) and it's taken me two days just to have the guts to use it. I don't really like sleeping more. I'll sleep a little but then I'll wake-up, stare at the clock, the crach of light behind the roller curtain or the sky, and be compleletely confused.
I asked alIi for a Bone Marrow Transplant, Avent Calendar, to remind me that today is Friday, September 28, 2012. Day 7 etc; etc. And in her likely manner she got RIGHT on it?...Allison created one for me. She made a count up calendar with an inspiring saying for every day. Today is "Stars will shine tonight for you"
Sweat Dreams
Dina
Friday 28 September 2012
Wednesday 26 September 2012
Day 5. Wednesday September 26th.
Wow, just reading back on the last two days you can tell how much pain killer I'm on. How does one manage to slur their written words? But I have managed it and I'm sure will continue to do. The days are loooooong. My goodness. Usually when I take a nap during the day I mess myself up and then feel like I'm in a million different time zone for days.
As I will continue to blog and to describe the "fun physical" side to transplant, I will try to temper it with some visits from "those in the know": the first being: Marty. He said I was looking good or serene or something, but that was before I told him I was on my maximum amounts for Fentanyl for pain and Attavan and for itchyness and nausea. Then Sergio stopped by. He said I'm doing great and that the reason I'm feeling so crappy is because we just punched out the leukemia so hard that they have black x's for eyes and they're just falling down and dying everywhere. I think I have a high standard for myself, in terms of post transplant party dance card. I forgot to schedule in that anytime I take a shower and even hit the loo, I need to block an hour of naps to recover.
Every part of me hurts. Head, shoulders, knees and teos, knees and toes... Eye and ears and mouth and nose. Plus, my esophagus feels like this:
Marty says that by Day 14, I should be feeling much better!
As I will continue to blog and to describe the "fun physical" side to transplant, I will try to temper it with some visits from "those in the know": the first being: Marty. He said I was looking good or serene or something, but that was before I told him I was on my maximum amounts for Fentanyl for pain and Attavan and for itchyness and nausea. Then Sergio stopped by. He said I'm doing great and that the reason I'm feeling so crappy is because we just punched out the leukemia so hard that they have black x's for eyes and they're just falling down and dying everywhere. I think I have a high standard for myself, in terms of post transplant party dance card. I forgot to schedule in that anytime I take a shower and even hit the loo, I need to block an hour of naps to recover.
Every part of me hurts. Head, shoulders, knees and teos, knees and toes... Eye and ears and mouth and nose. Plus, my esophagus feels like this:
Marty says that by Day 14, I should be feeling much better!
Tuesday 25 September 2012
Monday 24 September 2012
Day 3
Thank god Allison is here with me. This is like a slo-mo roller coaster ride. They spent the day today re-arranging some of my medicines because of some side-affects I might be having. Could be that the Dilauded is what makes me SO itchy, not the Tacrolimmus. So they switched me from that onto Fentanyl with a clicker button, meaing I can give a dosage to myself if I want, (every 15 minutes).
So as I tried that today, I kept sleeping in this 15 minute increments. I'd fall asleep at 2:30 and then wake up thinking I slept all day. Yet, I'd get this quick massage from the sky that the sun is pretty much in the same position and so I hardly slept. It's the day that lasted forever!
Or I'd fall asleep listening to Allison on the phone trying to round up volunteers for the Wellfleet Fall Oyster Festival, and then I'd fall asleeep, have this quick dream about what a success the Festival was, and the I'd wake up, still today, no oysters and beers having been had by anyway.
And then I start to cry... No idea way. Maybe because they whipped me off the anit-depressenant I have been using since the day I day diagnosed... Apparently the stuff is not good on the liver. And they are very much trying to take care of mine....
But anyway, there's lots of reasons to be emotional. But Day 3 is done. And we move on!
So as I tried that today, I kept sleeping in this 15 minute increments. I'd fall asleep at 2:30 and then wake up thinking I slept all day. Yet, I'd get this quick massage from the sky that the sun is pretty much in the same position and so I hardly slept. It's the day that lasted forever!
Or I'd fall asleep listening to Allison on the phone trying to round up volunteers for the Wellfleet Fall Oyster Festival, and then I'd fall asleeep, have this quick dream about what a success the Festival was, and the I'd wake up, still today, no oysters and beers having been had by anyway.
And then I start to cry... No idea way. Maybe because they whipped me off the anit-depressenant I have been using since the day I day diagnosed... Apparently the stuff is not good on the liver. And they are very much trying to take care of mine....
But anyway, there's lots of reasons to be emotional. But Day 3 is done. And we move on!
Day +2. Sunday, 23 September 2012
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."
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."
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.
Monday 17 September 2012
Net
I feel like no matter where I go, no matter where I've gotten treatment frpm for this damn disease, I'm always met with a net. A net of people. Sometimes the same, extremely devoted people who have been with me on this crazy trail from the beginning, and sometimes new ones, like all my friends in London. And now old friends, like I have found here in NY, who have walked back into my life like no time has passed at all. In fact, in walked my friend Emerson from fourth grade who has changed only in the sense that he is just more deeply his fabulous, funny, life-loving self. And my friends Darcy and Susan from college who I haven't seen in maybe 10ish years who came by with deep love and support and hilarious memories. My friend Andrea who brought her beautiful daughter Katie today to paint daisies on my toes. They walked in early, right when I felt my mood drooping and scooped me up. I don't even think they knew what a world of good their whirlwind of decorating and organizing and jokes did for me today. I think the bottom line is that whenever you have a hunch that someone's in need, don't hesitate. I only hope I can pay this forward one day soon. I really look forward to it. I feel really blessed and grateful for my Peoplenet.
Today, Susan and I received a really nice gift. We were sitting here reminiscing, sitting in the sunny window while she sweated under the protective garb all my visitors have to wear, when I get a tap on the window on my door that leads to the hall and I see a small Shofar and a man asking if we'd like him to come in and play it. "Of course. Please!" we said. He said a prayer about a sweet new year in Hebrew and we said Amen and he proceeded to blow the Shofar, really beautifully. I couldn't believe how cleansing and invigorating it felt, like a call to action. It felt all about moving forward with strength, leaving the past behind. I loved it. It was perfect.
I'm stilling feeling just fine. Tomorrow I start a new type of chemo. I'm too lazy to look up the name now, but it sounds unusual. Like nothing I've ever taken. The nurse said it leaves your body pretty quickly, through your pores, so that one hour and also five hours after getting it, you have to take a shower so that your skin doesn't get stained the color of the chemo. They call it bronzing. But I don't think it's necessarily a good color, like a tanning salon color (is that a good color?) I think it's a weird color. So I'll for sure be clean tomorrow...
The only side effects I can feel so far are some food aversions. Or maybe I'm just super tired of the hospital's Low Microbial Diet that I've been on for a week. Everything has to be cooked. And if anyone knows me, they know I'm a salad girl. But today, I kind of had a hard time getting anything down that wasn't a little bit sweet tasting. And it's so ridiculous because what's the one food you should stay away from when you have cancer? Sugar. One battle at a time here. A girl has got to eat!
Today, Susan and I received a really nice gift. We were sitting here reminiscing, sitting in the sunny window while she sweated under the protective garb all my visitors have to wear, when I get a tap on the window on my door that leads to the hall and I see a small Shofar and a man asking if we'd like him to come in and play it. "Of course. Please!" we said. He said a prayer about a sweet new year in Hebrew and we said Amen and he proceeded to blow the Shofar, really beautifully. I couldn't believe how cleansing and invigorating it felt, like a call to action. It felt all about moving forward with strength, leaving the past behind. I loved it. It was perfect.
I'm stilling feeling just fine. Tomorrow I start a new type of chemo. I'm too lazy to look up the name now, but it sounds unusual. Like nothing I've ever taken. The nurse said it leaves your body pretty quickly, through your pores, so that one hour and also five hours after getting it, you have to take a shower so that your skin doesn't get stained the color of the chemo. They call it bronzing. But I don't think it's necessarily a good color, like a tanning salon color (is that a good color?) I think it's a weird color. So I'll for sure be clean tomorrow...
The only side effects I can feel so far are some food aversions. Or maybe I'm just super tired of the hospital's Low Microbial Diet that I've been on for a week. Everything has to be cooked. And if anyone knows me, they know I'm a salad girl. But today, I kind of had a hard time getting anything down that wasn't a little bit sweet tasting. And it's so ridiculous because what's the one food you should stay away from when you have cancer? Sugar. One battle at a time here. A girl has got to eat!
Sunday 16 September 2012
Cabin Fever Already.
Well, I almost watched the entire 3rd season of Friday Night Lights today. It was a very quiet day. I caught up on sleep too. Tracy brought me an egg crate bed topper and it has changed everything. I realized how many days it's been since I've slept well and laid down on a comfortable bed. Now it's like a little piece of heaven. I'm still feeling fine. No real effects from chemo yet. I'm just going a little stir crazy. My counts are low so I'm still not allowed to walk the halls. I haven't walked a continual forward motion in five days. I can't believe it's only been five days. Wow. It feels like longer. Exercising in this room is pretty uninspired. I have a Reebok step in here that is mind-numbing just to look at. I used it a bit. Why do I find it crazily boring? And I have the Theraband that I can tie to the doorknob and work out my arms a bit. And there's this little pedal machine that you sit in a chair and pedal on. I haven't tried it yet. Maybe it'll be my little saving grace. I read a lot that being in good shape before a transplant helps tremendously. And I feel like I'm swimming upstream just trying to maintain whatever strength I have. Maybe upstream is good. I'll bet a salmon is a very strong fish...
Saturday 15 September 2012
Day 3 of Chemo and New Years Eve
L'Shana Tovah! It's the New Year of 5773 on the Hebrew calendar. That puts some perspective on things. But who's counting right? Three days of chemo, 5773 years of Hebrew culture, One Day at a Time. It's all good. New years are good, especially when you're not forced into going out and getting inexplicably drunk. I like the basic idea of just a new beginning.
This past year, each time I was thinking I was about to get ready for a transplant, it always seemed to coincide with some holiday. Thanksgiving, Martin Luther King Day, Valentine's Day. All good holidays. But now the real deal is happening on Rosh Hashana. Newness. In fact, this year, September 21 really falls right in between Rosh Hashana and Yom Kippur. Yom Kippur is considered one of the holiest Jewish holidays. It's a day of repentance and forgiveness and to feel closest to God. It encompasses extremes of feeling. Sorry and forgiven. Sad and relieved. Cloudy and clean.
These Opposites existing all at once could not define my present experience better. I feel well taken care of, but lonely. I feel strong but sick. I feel excited and scared. Positive, yet freaked out. I feel lucky and unlucky. I have extreme faith in a body that has actually failed me. I have extreme faith in a transplant that doesn't always work for everybody. It's a lot to handle all inside one person in one day. But I have to recognize these dichotomies. They are plain as day swirling around me. I'm sitting between a festive new beginning and the heaviness of making that new beginning real. (The idea of how hard a baby has to work just to be born, just to come out into the world, comes to mind. Well my kids didn't work so hard both being c-sections... but you know what I mean...)
I was reading lots of testimonials of transplant survivors this evening. Many spoke of a new lease on life, but that it wasn't easy to get to. They also spoke about what wasn't easy. So I can prepare myself by not being surprised by anything. Yikes? So many things!
When Isaac was little he was really into NASCAR. I took him twice. I know it's the highest-grossing sport in the U.S. but as hard as I tried, it was difficult to embrace! Not just because it's so frickin' loud, but because of the strangeness of it. You sit in the bleachers and watch cars go around and around and around for 500 miles! And then everyone gets up and cheers when a car veers or crashes and you continue standing and watching in this pure rubber-necking kind of way, to see if anyone is hurt, or needs to be towed or have their car fixed, asking, "Are they still in the race?" And all the other cars just keep going around and around and around.
It's like a transplant. Can I rubber-neck my own life! I do chemo. How will I tolerate it? I'll get new cells. How will I tolerate them? I'll wait till they engraft. How will I tolerate them? They'll engraft. How well will they fight leukemia? I'll leave the hospital. How soon till I get my strength back? How soon will it be till I can go back home and kiss my kids? Will I still be in the race? My neck hurts!
L'Shana Tovah,
Dina
This past year, each time I was thinking I was about to get ready for a transplant, it always seemed to coincide with some holiday. Thanksgiving, Martin Luther King Day, Valentine's Day. All good holidays. But now the real deal is happening on Rosh Hashana. Newness. In fact, this year, September 21 really falls right in between Rosh Hashana and Yom Kippur. Yom Kippur is considered one of the holiest Jewish holidays. It's a day of repentance and forgiveness and to feel closest to God. It encompasses extremes of feeling. Sorry and forgiven. Sad and relieved. Cloudy and clean.
These Opposites existing all at once could not define my present experience better. I feel well taken care of, but lonely. I feel strong but sick. I feel excited and scared. Positive, yet freaked out. I feel lucky and unlucky. I have extreme faith in a body that has actually failed me. I have extreme faith in a transplant that doesn't always work for everybody. It's a lot to handle all inside one person in one day. But I have to recognize these dichotomies. They are plain as day swirling around me. I'm sitting between a festive new beginning and the heaviness of making that new beginning real. (The idea of how hard a baby has to work just to be born, just to come out into the world, comes to mind. Well my kids didn't work so hard both being c-sections... but you know what I mean...)
I was reading lots of testimonials of transplant survivors this evening. Many spoke of a new lease on life, but that it wasn't easy to get to. They also spoke about what wasn't easy. So I can prepare myself by not being surprised by anything. Yikes? So many things!
When Isaac was little he was really into NASCAR. I took him twice. I know it's the highest-grossing sport in the U.S. but as hard as I tried, it was difficult to embrace! Not just because it's so frickin' loud, but because of the strangeness of it. You sit in the bleachers and watch cars go around and around and around for 500 miles! And then everyone gets up and cheers when a car veers or crashes and you continue standing and watching in this pure rubber-necking kind of way, to see if anyone is hurt, or needs to be towed or have their car fixed, asking, "Are they still in the race?" And all the other cars just keep going around and around and around.
It's like a transplant. Can I rubber-neck my own life! I do chemo. How will I tolerate it? I'll get new cells. How will I tolerate them? I'll wait till they engraft. How will I tolerate them? They'll engraft. How well will they fight leukemia? I'll leave the hospital. How soon till I get my strength back? How soon will it be till I can go back home and kiss my kids? Will I still be in the race? My neck hurts!
L'Shana Tovah,
Dina
Friday 14 September 2012
Day Two of Chemo, One Day at a Time
So far so good? I have a nurse who keeps telling me "one day at a time." I guess now I understand why people have those bumper stickers on their cars? But I think I'd rather need mine in my car! How many times do you come up from behind your cars to get in?
When I was young I saw those stickers a lot. It was when AA was really getting popular. I had NO idea what they meant. One Day At A Time? Hmmm. I think it's a concept that has to grows on you. And it might also just be a concept for grown-ups. I have mentioned it to Isaac a few times when he'd say he was feeling sad because he missed me. It seemed so foreign to him and I'm not sure it was of any comfort to him. It seemed maybe even puzzling. But I planted the seed and said, "It's really all we've got. Today. Right now. So let's enjoy it as much as we can and if you feel sad, you just feel it. And then other emotions will come along too. I promise. We just have to feel them all as they come. Sad, happy, fun, all of them." I was for sure talking to myself just as much as I was talking to him.
What made me think of this was because last night, after I wrote in the blog about how ecstatic I was feeling, and I was all done writing and I put the computer on sleep, and I was flipping around the channels and there was absolutely nothing on, all of a sudden I got really sad and really lonely. Bam! Just like that. And of course I called Andy and started crying and he can't even understand what I'm saying because I'm blubbering so much and he's trying to talk me down off the ledge and then reminds me to take it one day at a time. He said, "As hard as it is now, we're both so glad I'm here". I think he's coming for the transplant. Just for a few days. I'm so glad he can swing it. He deserves to see those beautiful cells go in. It'll be quite a day.
When I was young I saw those stickers a lot. It was when AA was really getting popular. I had NO idea what they meant. One Day At A Time? Hmmm. I think it's a concept that has to grows on you. And it might also just be a concept for grown-ups. I have mentioned it to Isaac a few times when he'd say he was feeling sad because he missed me. It seemed so foreign to him and I'm not sure it was of any comfort to him. It seemed maybe even puzzling. But I planted the seed and said, "It's really all we've got. Today. Right now. So let's enjoy it as much as we can and if you feel sad, you just feel it. And then other emotions will come along too. I promise. We just have to feel them all as they come. Sad, happy, fun, all of them." I was for sure talking to myself just as much as I was talking to him.
What made me think of this was because last night, after I wrote in the blog about how ecstatic I was feeling, and I was all done writing and I put the computer on sleep, and I was flipping around the channels and there was absolutely nothing on, all of a sudden I got really sad and really lonely. Bam! Just like that. And of course I called Andy and started crying and he can't even understand what I'm saying because I'm blubbering so much and he's trying to talk me down off the ledge and then reminds me to take it one day at a time. He said, "As hard as it is now, we're both so glad I'm here". I think he's coming for the transplant. Just for a few days. I'm so glad he can swing it. He deserves to see those beautiful cells go in. It'll be quite a day.
Thursday 13 September 2012
Fresh
This is it!! They've started my chemo!! I'm so excited I can't even believe it!! They took another chest x-ray this afternoon and made a plan that if it was clear they would start me. And they did! Dr. Giralt said to make a plan and leave it in God's hands. So Thank You God. I'm on my way. And starting today means I get the FRESH Whole Foods cells next Friday! Next Friday brand new stem cells go into me donated by Fantastic Girl!!! I just LOVE her!!!
I don't think the nurse has ever seen anyone more excited to start chemo in her life. She said having a good attitude is so important. My jury is still out on that one. But the massage therapist that came this afternoon did make a good point that when you're upset or resisting something it's a lot harder on the nervous system and hence on the immune system. Of course, I've heard this before, but it made some extra good sense to me today.
Thank you to everyone for all your support on this messy path. I'm starting fresh, and this time for real!
Much love,
Dina
I don't think the nurse has ever seen anyone more excited to start chemo in her life. She said having a good attitude is so important. My jury is still out on that one. But the massage therapist that came this afternoon did make a good point that when you're upset or resisting something it's a lot harder on the nervous system and hence on the immune system. Of course, I've heard this before, but it made some extra good sense to me today.
Thank you to everyone for all your support on this messy path. I'm starting fresh, and this time for real!
Much love,
Dina
Wednesday 12 September 2012
IVIG and Prune Danish
Immunoglobulin Heavy Chain Gamma Polypeptide (IVIG). This is what they've given me today to hopefully help fight this cold. And typically, just like me, I had a severe reaction to it, despite being pre-medicated with Benedryl and Tylenol. I thought I was spiking a fever already from an infection even though I hadn't even started chemo yet! But the nurse said that it could easily be a side effect from the IVIG.
Then my head started to hurt like I thought it would pop off and the same pain started in my lower back. And as painful as that was, it was a relief because that's not a symptom of infection. So, the worse the pain got, the more relieved I was. It was totally weird. The nurse gave me more Benedryl, Hydrocortisone, and Morphine and everything started slowly to subside. I went from bored to drama in 60 seconds and then back again.
Now I'm back on the IVIG, but it's dripping much more slowly into me and I think I'm OK. Plus, I convinced the doctors to let me take zinc! Usually, when I have a cold I take Vitamin C, B, D, Zinc, Garlic, Echinacea and Golden Seal. Doesn't everyone? But Susanne suggested zinc as probably being the most effective of those and we found a study from 2011 in the medical journal Family Practice that described just that. I sent it to the doctors and they said "Go for it". As long as I don't mix in or introduce anything during chemo they seemed very open. The nurse was really impressed I got them to go "alternative". I love them.
Although this transplant has shown already to be not without hitches, I am still elated to be here, in this hospital, waiting for this transplant. It has been the longest haul, for all of us. I think we're all on the edge of being burnt out. And it's important now for me to just keep the focus, keep strong, keep the faith and move forward.
I found out today through the social worker here I have a reservation at the Hope Lodge for October 9th until December 31st. I am very relieved and grateful for this and I think it will be a great experience to healing from a transplant while there are other people around doing the same thing. Either healing from transplant or something else cancer-y. So I have my sights set on my transplant date and my discharge date and finally getting a go-home-to-London date.
I know this is crazy, but we've done such a good job supporting the kids while I'm gone, my house is apparently like a funhouse! Amal is a fantastic friend to me and Andy but also to the kids. And Andy is good at planning fun stuff to do with the kids. It's all I want. I want them to do fun fun fun stuff so that time flies by. And I need to focus the same way on myself. I need to download fun stuff, read fun stuff, be with friends when they can, and find good projects to do.
I forgot the other day that I had downloaded "Prune Danish" by Jackie Mason. My songs were on shuffle and he popped up and I'm cracking up before I know it. Like really laughing hard. I don't think you have to be Jewish to enjoy? I'm not sure...maybe you just have to know a few Jews really well.
I forgot the other day that I had downloaded "Prune Danish" by Jackie Mason. My songs were on shuffle and he popped up and I'm cracking up before I know it. Like really laughing hard. I don't think you have to be Jewish to enjoy? I'm not sure...maybe you just have to know a few Jews really well.
I was sitting on the bed today and the Chaplin du Jour came in to see if I needed anything. He was a really tall, thin, handsome, African-American man in a neat suit with a really calming voice and good energy. We chatted a little and then I thought, why not? Ask him to say a prayer. So he did. He said a beautiful prayer all about focus and strength and healing for me and everyone. Really nice guy.
When he left he gave me his card. He's an Imam. I never would have expected it. And it felt like the double triple right thing today as the US consulate in Libya was attacked. People dedicated to creating peace lost their lives so this Imam's prayer goes out to them. It's a tough week for the US. I thought Hillary Clinton was eloquent in her short speech. You could see how hard she's been working and how what a disappointment this was for her. I know she will move forward as she always has. Such a great role model for anyone, anywhere, who faces challenges. And I imagine that would be all of us.
When he left he gave me his card. He's an Imam. I never would have expected it. And it felt like the double triple right thing today as the US consulate in Libya was attacked. People dedicated to creating peace lost their lives so this Imam's prayer goes out to them. It's a tough week for the US. I thought Hillary Clinton was eloquent in her short speech. You could see how hard she's been working and how what a disappointment this was for her. I know she will move forward as she always has. Such a great role model for anyone, anywhere, who faces challenges. And I imagine that would be all of us.
May the planet find balance and for everyone in it to find balance too.
Supporting Great Causes
Wow! Our fundraising effort for Gift of Life, the bone marrow donation registry in Florida has just found another match for a 35 year old man from one of the swab kits they were able to open and test because of your donations. Thank you so much. From this end, I can surely say that knowing there is a life-saving match for you so that you can have a transplant is so exciting, so critical, and magical. I wish this newly matched pair the very best of luck! Check out the site to see how it works and how much we've raised!
http://www.giftoflife.org//dc/Dina-Rukeyser/blog.aspx
In addition, my close friends in London are running a half-marathon in October for the Anthony Nolan Center in England. They are a large bone marrow registry and research facility in the UK. They are the ones that found me my matches. Elsie and her husband Mark are running in this half-marathon in my honor which makes every bit of their hard work even sweeter and so meaningful to me. If you can, please pull up their webpage and hopefully support them and donate for them to have a great run and for the Anthony Nolan to keep up its good work. Donating to these types of organizations is such a great charity choice. You can TRUELY save someone's LIFE!! Good Luck Elsie and Mark. And thank you!
Here's the link:
http://uk.virginmoneygiving.com/MarkandElsieWoolley
xox
http://www.giftoflife.org//dc/Dina-Rukeyser/blog.aspx
In addition, my close friends in London are running a half-marathon in October for the Anthony Nolan Center in England. They are a large bone marrow registry and research facility in the UK. They are the ones that found me my matches. Elsie and her husband Mark are running in this half-marathon in my honor which makes every bit of their hard work even sweeter and so meaningful to me. If you can, please pull up their webpage and hopefully support them and donate for them to have a great run and for the Anthony Nolan to keep up its good work. Donating to these types of organizations is such a great charity choice. You can TRUELY save someone's LIFE!! Good Luck Elsie and Mark. And thank you!
Here's the link:
http://uk.virginmoneygiving.com/MarkandElsieWoolley
xox
Rhino Ugh Again!
I tested positive for Rhinovirus again. The Common Cold. The doctor on rounds said if I was in remission he'd send me home and tell me to come back in a week but that we don't have that luxury. He went out and discussed this with Dr. Giralt on the phone and came back and said they will give me a bag of gammaglobulin, human antibodies, and see if that helps me fight the Rhinovirus. So they are watching me for 48 hours and the transplant is postponed now, by at least two days. They may or may not switch around the donor dates, so I may end up getting frozen (Trader Joe's) cells after all. He said 5% of patients get frozen cells and it's fine. And 100% of autologous transplant patients get frozen cells (that's where you get your own cells). I just figure, whatever they say is fine with me. I don't want extra risk involved in the transplant. And neither do they. This is truly one day at a time. I'm not sure when I'm supposed to get any sleep here. They come in all night long. And all day long. Can't sleep deprivation lead to insanity? Does anyone else ever feel like their lives are StartStopStartStop? I do...
It seems everything is going fine at home. Isaac was too jet-lagged to go to school. That's OK. Ari's life is chock-full of playdates and Dora our new nanny seems to be working out. Thanks to Amal for holding it all together there during the nanny transition and when Andy needs to travel. We'd be in sorry shape without her. She's gone to school meetings for me, bathed Ari for me, and constantly sends me emails about the kids and how they're doing. Even her kids check-in and hang around and make our home a much more fun place to be. Sounds so fun, I want to be there! Well, of course I do...
I'm going to try not to get depressed or freak-out about this postponement. But already this is getting hard. I've been here for less than 24 hours and already there's a Rhino in my way.
It seems everything is going fine at home. Isaac was too jet-lagged to go to school. That's OK. Ari's life is chock-full of playdates and Dora our new nanny seems to be working out. Thanks to Amal for holding it all together there during the nanny transition and when Andy needs to travel. We'd be in sorry shape without her. She's gone to school meetings for me, bathed Ari for me, and constantly sends me emails about the kids and how they're doing. Even her kids check-in and hang around and make our home a much more fun place to be. Sounds so fun, I want to be there! Well, of course I do...
I'm going to try not to get depressed or freak-out about this postponement. But already this is getting hard. I've been here for less than 24 hours and already there's a Rhino in my way.
Tuesday 11 September 2012
Rm 829
I can hardly keep my eyes open. The drugs they gave me to place this Hickman line in my chest are for sure lingering from 3:00 this afternoon and it's already midnight! Obviously, the smart answer would be to go to sleep. But they're still doing all the admitting type stuff. I'm just waiting for an EKG. They're getting baselines for everything so they can compare if anything changes.
Isaac left this afternoon. He and Tracy hung around with me while I was waiting to get admitted to get the line put in. It was so hard for me to see him go. He had a 7:30 flight this evening and is the bravest kid I've ever met. I kept my cool and didn't go all cry-cry on him. But after he left I cried my eyes out, all the way as they wheeled me into the operating room. The nurses were sweet and said, "Oh, we're going to give you some nice drugs and you're going to feel much better". And I did, besides the fact that I couldn't stop slurring my words.
So now the line is in, with a big ice pack on it. Ouch. But the swelling will go down soon I'm sure. This is my first test to remember that anything painful, uncomfortable or scary while I'm in here is temporary and will pass and I'll get through it. I've had a lot of experience with this and I think it should, I hope, help me to navigate this path more easily.
It was hard to leave Tracy and Larry's house today. They've created such a warm and comfortable home. It's great for hanging out and they have good chairs to cuddle in.
The other day when Dee and I were wandering down Madison Avenue, we went into Ralph Lauren. I love most of his stuff and it's always so fun to go in there and see how he puts things together. He uses the most amazing fabrics; cashmere, silks, feathers, totally soft leathers and suedes. We were just touching everything.
My initial hunch when we walked in was to go to the top floor. The Home Collection. I walked in there and had to catch my breath at the beauty and comfort of these rooms. They were so inviting but also glamorous. I realized how deeply I miss home. My home. I got such a lump in my throat. Plus, on the overheard music system they were playing "Talking With the Wolves" by Glen Hansard, the guy from the movie Once. Andy and I went to see him perform at the Chicago Theater at few years ago. It was all I could do not to climb into one of those beautiful Ralph Lauren beds and cry. I felt this great resolve come over me to get back to my home as soon as conceivably possible.
In the meantime I will do my best to make hospital room number 829 a home. It's a small room and they have me on the waiting list for a bigger one if any come available. I wouldn't care except for that Allison is coming on Monday for a week (blessed I am) and I want her to be as comfy as possible. The bigger rooms apparently have futons in them for guests rather than the pullout chair that she'd have to sleep on in this room.
But honestly, the fact that I am in a room on the transplant floor at Sloan Kettering is amazing. It's a relief, and it's exciting. I've had my eye on this moment for so long. It's hard to believe this is really happening! I'll surely believe it tomorrow when they start the chemo. Good night for now. Enjoy your homes. Sweet dreams to all.
xo
Isaac left this afternoon. He and Tracy hung around with me while I was waiting to get admitted to get the line put in. It was so hard for me to see him go. He had a 7:30 flight this evening and is the bravest kid I've ever met. I kept my cool and didn't go all cry-cry on him. But after he left I cried my eyes out, all the way as they wheeled me into the operating room. The nurses were sweet and said, "Oh, we're going to give you some nice drugs and you're going to feel much better". And I did, besides the fact that I couldn't stop slurring my words.
So now the line is in, with a big ice pack on it. Ouch. But the swelling will go down soon I'm sure. This is my first test to remember that anything painful, uncomfortable or scary while I'm in here is temporary and will pass and I'll get through it. I've had a lot of experience with this and I think it should, I hope, help me to navigate this path more easily.
It was hard to leave Tracy and Larry's house today. They've created such a warm and comfortable home. It's great for hanging out and they have good chairs to cuddle in.
The other day when Dee and I were wandering down Madison Avenue, we went into Ralph Lauren. I love most of his stuff and it's always so fun to go in there and see how he puts things together. He uses the most amazing fabrics; cashmere, silks, feathers, totally soft leathers and suedes. We were just touching everything.
My initial hunch when we walked in was to go to the top floor. The Home Collection. I walked in there and had to catch my breath at the beauty and comfort of these rooms. They were so inviting but also glamorous. I realized how deeply I miss home. My home. I got such a lump in my throat. Plus, on the overheard music system they were playing "Talking With the Wolves" by Glen Hansard, the guy from the movie Once. Andy and I went to see him perform at the Chicago Theater at few years ago. It was all I could do not to climb into one of those beautiful Ralph Lauren beds and cry. I felt this great resolve come over me to get back to my home as soon as conceivably possible.
In the meantime I will do my best to make hospital room number 829 a home. It's a small room and they have me on the waiting list for a bigger one if any come available. I wouldn't care except for that Allison is coming on Monday for a week (blessed I am) and I want her to be as comfy as possible. The bigger rooms apparently have futons in them for guests rather than the pullout chair that she'd have to sleep on in this room.
But honestly, the fact that I am in a room on the transplant floor at Sloan Kettering is amazing. It's a relief, and it's exciting. I've had my eye on this moment for so long. It's hard to believe this is really happening! I'll surely believe it tomorrow when they start the chemo. Good night for now. Enjoy your homes. Sweet dreams to all.
xo
Monday 10 September 2012
The Night Before
Thank you to everyone for your phonecalls and emails and facebook posts and texts wishing me luck, sending me hugs, sending me love, praying for me and my family. I do not take those prayers lightly, nor the love, nor any of it. Cheering a person on really does a world of good for them and I hope I will always remember to cheer on those I know and love who are undertaking new things, be they life-changing or not.
I think often we feel it's too nosy to become involved in other people's business. But if you know about their business somehow already, it's likely you're not the only one, and that person could probably use a boost. It's so easy to say something like, "Hey, I've heard you're going through something hard and I'm rooting for you". So simple.
So, "The Night Before" it is! I truly wasn't sure this day would ever come. I am to be admitted tomorrow, get a port or Hickman line in my chest and then Wednesday start chemotherapy treatment. I'd be lying if I said I'm not scared. It's a roller coaster in there, and not a Kiddieland roller coaster but more like a Six-Flags roller coaster. The ones most adults prefer not to go on. And then there's the anxiety about the whole thing working. It's got to work. I'm so excited about my donor. I can't wait to meet her. She's the coolest person in the world.
Tomorrow Isaac goes back to London. He and Tracy will take me to hospital and hang out a bit and then Tracy will take Isaac to JFK. Tracy is a Goddess. She's a class act and a true role model. She's like so many of my friends. I learn from them every day. How to be a little bit more available, a little bit kinder, more helpful, loving. Present. I love to see how different people do this. Everyone in their own way. Everyone's unique in how they express love, and how they've decided what kind of person they want to be.
Allison arrives on Monday and I will keep my eyes cast in that direction. While I've been with Isaac I've found myself, a number of times, wishing I could stop time. I totally get Jim Croce's song now (Time in a Bottle), sorry if that now gets stuck in your head. But I get it. And then as soon as my treatment starts tomorrow I want time to go fast fast fast!!
I was speaking with Dee on the phone tonight and she was reminding me that I have to be my own advocate, especially because there are days when I'll be on my own in the hospital. She reminded me of a time, this last round, where I asked to stop taking a certain anti-biotic because it was giving me back pain. So they took me off it. Switched me to something else. And I was fine. Now, I have NO recollection of this! None. These hospital sessions become these giant forget sessions. I'm sure I've blocked out so much. But I'm glad to know in my unconscious stupor that I was able to advocate for myself. That's a good thing. Marty's nurse Maggie today told me that while I'm in the hospital I need to tell the nurses everything. Any change in anything and I need to tell them. I'm pretty sure I can do that.
And I will take the whole thing one day at a time. Starting tomorrow...
I think often we feel it's too nosy to become involved in other people's business. But if you know about their business somehow already, it's likely you're not the only one, and that person could probably use a boost. It's so easy to say something like, "Hey, I've heard you're going through something hard and I'm rooting for you". So simple.
So, "The Night Before" it is! I truly wasn't sure this day would ever come. I am to be admitted tomorrow, get a port or Hickman line in my chest and then Wednesday start chemotherapy treatment. I'd be lying if I said I'm not scared. It's a roller coaster in there, and not a Kiddieland roller coaster but more like a Six-Flags roller coaster. The ones most adults prefer not to go on. And then there's the anxiety about the whole thing working. It's got to work. I'm so excited about my donor. I can't wait to meet her. She's the coolest person in the world.
Tomorrow Isaac goes back to London. He and Tracy will take me to hospital and hang out a bit and then Tracy will take Isaac to JFK. Tracy is a Goddess. She's a class act and a true role model. She's like so many of my friends. I learn from them every day. How to be a little bit more available, a little bit kinder, more helpful, loving. Present. I love to see how different people do this. Everyone in their own way. Everyone's unique in how they express love, and how they've decided what kind of person they want to be.
Allison arrives on Monday and I will keep my eyes cast in that direction. While I've been with Isaac I've found myself, a number of times, wishing I could stop time. I totally get Jim Croce's song now (Time in a Bottle), sorry if that now gets stuck in your head. But I get it. And then as soon as my treatment starts tomorrow I want time to go fast fast fast!!
I was speaking with Dee on the phone tonight and she was reminding me that I have to be my own advocate, especially because there are days when I'll be on my own in the hospital. She reminded me of a time, this last round, where I asked to stop taking a certain anti-biotic because it was giving me back pain. So they took me off it. Switched me to something else. And I was fine. Now, I have NO recollection of this! None. These hospital sessions become these giant forget sessions. I'm sure I've blocked out so much. But I'm glad to know in my unconscious stupor that I was able to advocate for myself. That's a good thing. Marty's nurse Maggie today told me that while I'm in the hospital I need to tell the nurses everything. Any change in anything and I need to tell them. I'm pretty sure I can do that.
And I will take the whole thing one day at a time. Starting tomorrow...
Saturday 8 September 2012
"Hope in the face of difficulty"- Barack Obama
I know some people thought Obama's acceptance speech was too similar to his same speech four years ago. Politically I don't know if that's good for him or bad for him, but for me, hearing his words did me a world of good. I feel like he and Joe Biden are really bootstrap kind of guys. They have moved through extremely difficult, heart-wrenching situations and are simply amazing people for it. On a personal level, they are incredible role models with great dispositions and character. They don't blame anyone for their pasts or their present struggles (well maybe Repubs in Senate a bit) and their personal struggles have never stopped them from working, helping, serving, caring, thinking, educating, consoling or loving. It's impressive. I truly don't mind them flying my plane.
Character and disposition are so huge in someone's life. Are you born with it? Do you shape it? Can you actually change, control, direct your disposition? I feel like my disposition can change with the wind. I might be really hard on myself one day, and then totally forget to do it the next. I might feel totally guilty about this long hospitalization and separation from my family one day, and then the next I feel like this is about me and I should stay focused on just getting through the transplant and getting well.
Or, one day, I might be so "on", shooting good witty jokes and laughs (usually the type that I think is funnier than anyone else does, but someone has to!) and other days I can't scrape two coherent or interesting words together. And this is all before I even start the chemo!!
I'm thinking about all this, not only because of the speech but because I spent the day with Isaac and Dee. Two people whose characters and dispositions surprise and delight me all the time. I hope I am as kind and fun as they are. They're consistently mensches and I couldn't be prouder to know them or be related to them. Dee has this gentle sense of humor that can knock sense into you at the same time. And Isaac is so warm, and focused, loving and courageous. I love taking my cues from people like them because they are unwavering and devoted to being loving. Maybe I'm like that, maybe I'm not. I hope so. Maybe that's really just up to other people to decide. Meanwhile, I'll just keep admiring it and hope that some of it rubs off.
I'm not saying I really want to change myself. I like myself a lot just as is. But everyone is always striving to be better. Sometimes I have visions of myself, after my new cells go in, of jumping into a phonebooth and coming out with a flashy cape on that says "Stem-Cell Girl!!!" on it. And I'd be all buff and psyched and at anyone's disposal if they need to have the world saved. Doesn't that sound good? Today, that is my crazy way of having hope in the face of difficulty.
Character and disposition are so huge in someone's life. Are you born with it? Do you shape it? Can you actually change, control, direct your disposition? I feel like my disposition can change with the wind. I might be really hard on myself one day, and then totally forget to do it the next. I might feel totally guilty about this long hospitalization and separation from my family one day, and then the next I feel like this is about me and I should stay focused on just getting through the transplant and getting well.
Or, one day, I might be so "on", shooting good witty jokes and laughs (usually the type that I think is funnier than anyone else does, but someone has to!) and other days I can't scrape two coherent or interesting words together. And this is all before I even start the chemo!!
I'm thinking about all this, not only because of the speech but because I spent the day with Isaac and Dee. Two people whose characters and dispositions surprise and delight me all the time. I hope I am as kind and fun as they are. They're consistently mensches and I couldn't be prouder to know them or be related to them. Dee has this gentle sense of humor that can knock sense into you at the same time. And Isaac is so warm, and focused, loving and courageous. I love taking my cues from people like them because they are unwavering and devoted to being loving. Maybe I'm like that, maybe I'm not. I hope so. Maybe that's really just up to other people to decide. Meanwhile, I'll just keep admiring it and hope that some of it rubs off.
I'm not saying I really want to change myself. I like myself a lot just as is. But everyone is always striving to be better. Sometimes I have visions of myself, after my new cells go in, of jumping into a phonebooth and coming out with a flashy cape on that says "Stem-Cell Girl!!!" on it. And I'd be all buff and psyched and at anyone's disposal if they need to have the world saved. Doesn't that sound good? Today, that is my crazy way of having hope in the face of difficulty.
Friday 7 September 2012
My Lucky Day
I can't decide which is more amazing: Isaac asleep here right next to me, or that my bone marrow biopsy from yesterday came back today at only 11% blasts which means that all systems are a go. Those two things are neck and neck to me.
Isaac arrived this evening and remains one of the funnest, nicest, kindest, smartest people I've ever met. He brought Union Jack buttons for me to give the nurses. And he brought me chocolate. And he brought me himself. We told Ari that Isaac was going on a class trip. Normally I abhor fibbing to kids. I think it's ridiculous. I think that most of the time there's a way to communicate the truth to them in a way that can be easily absorbed for them at the time. But this was a doozy. "Isaac is going to see mommy and you can't go because you're too little." Blech. It's awful no matter how you slice it. But I'm sure Ari and Andy will have a really nice weekend together.
It's official that I'm going to be admitted on Tuesday to begin this crazy process. It's been SUCH a long wait. Yesterday was a day of tests and conversations. The conversations being harder than the tests. Dr. Giralt's has a few mottos. One is "Prepare for the Worst but Expect the Best", and the other is, "Give me A Year and I'll Give You a Lifetime." The subtext of both is that it's going to be a hell of a year, but it's worth it.
After a long conversation with Dr. Giralt, I signed to join his Clinical Trial. I asked him a ton of questions about it. They really need to rewrite the trial explanation because it is now actually in Phase II. Phase I, the part about deciding the best and safest dosaging has been completed. So now they are looking at this drug combination and seeing if people fair better in the long run after being administered it for the conditioning stage of transplant (which really just means the pre-transplant chemo). He thinks it will give me an extra edge that I could really use. He describes it as being a tough run. Super tired. Yucky mouth sores. Fevers. He was making it sound really bad, I think to scare me a little so that I'd be prepared for the worst. It worked. I'm pretty nervous...But still hoping for the best.
The tests were not so hard. But interesting in some ways. I love those echo-cardiograms because you get to see your heart cheering you on; valves clapping and that constant rhythm of life. Then I took a pulmonary function test. I was a little nervous about it because of having had the fungal pneumonia in March and a chest infection this last round of chemo. What were my lungs really like after all that? I blew into a tube in different ways and then did a short Stairmaster type test. I was afraid to find out how bad things really were. I didn't want to face it, though I was a bit curious too.
It reminded me of when I worked in Adult Literacy. Often, adult students would come to us having no idea what they knew and didn't know about reading and writing and we'd have to find ways to test that so that we'd know where and how to start with someone, what group to have them join. For people who have been navigating the world without reading and/or covering up the fact that they weren't readers, well into their adulthood, this was tough. They were brilliant for being able to do it. And we were asking them to give all that up and face the struggle head-on so they could begin the learning.
I remember one particularly touching evening where I had a brand new student, probably 25 years old. He had a "Certificate of Completion" from the NYC public school system. That's for kids who were pushed through the system year after year, but could not complete the work and were too old to remain in school any longer. I asked him to write something and gave him a few choices of topics I was hoping would be inspiring. He looked at me like I was crazy and said, "But I can't write". I said, "Well, if you get stuck, draw a line and I'll come over and fill in the word for you". He said, "Wow!" and he sat down and wrote almost an entire page of lines, so fast I could hardly keep up with filling them in. It was like he was free. Free to write his story. I typed it up for him and he spent the next few weeks learning to read his own work. It was a really beautiful moment. For me at least...
There's something really good about finding out and admitting where you're at. I hardly ever do it. I want to reach into the future and always be better, do better. But really I have to ask, "Better than what?" If I don't gauge where I'm at somehow, how do I know where to go from there? It's like having an occasional heart-to-heart with yourself. "Where the heck am I at?'
I guess I can write about this because even though this transplant has been such a long time coming, I'm really at square one. I'm beginning something new. I have to accept where I'm at and work with it. I passed my tests so far and it seems I've bought myself a transplant. Lucky Day.
Isaac arrived this evening and remains one of the funnest, nicest, kindest, smartest people I've ever met. He brought Union Jack buttons for me to give the nurses. And he brought me chocolate. And he brought me himself. We told Ari that Isaac was going on a class trip. Normally I abhor fibbing to kids. I think it's ridiculous. I think that most of the time there's a way to communicate the truth to them in a way that can be easily absorbed for them at the time. But this was a doozy. "Isaac is going to see mommy and you can't go because you're too little." Blech. It's awful no matter how you slice it. But I'm sure Ari and Andy will have a really nice weekend together.
It's official that I'm going to be admitted on Tuesday to begin this crazy process. It's been SUCH a long wait. Yesterday was a day of tests and conversations. The conversations being harder than the tests. Dr. Giralt's has a few mottos. One is "Prepare for the Worst but Expect the Best", and the other is, "Give me A Year and I'll Give You a Lifetime." The subtext of both is that it's going to be a hell of a year, but it's worth it.
After a long conversation with Dr. Giralt, I signed to join his Clinical Trial. I asked him a ton of questions about it. They really need to rewrite the trial explanation because it is now actually in Phase II. Phase I, the part about deciding the best and safest dosaging has been completed. So now they are looking at this drug combination and seeing if people fair better in the long run after being administered it for the conditioning stage of transplant (which really just means the pre-transplant chemo). He thinks it will give me an extra edge that I could really use. He describes it as being a tough run. Super tired. Yucky mouth sores. Fevers. He was making it sound really bad, I think to scare me a little so that I'd be prepared for the worst. It worked. I'm pretty nervous...But still hoping for the best.
The tests were not so hard. But interesting in some ways. I love those echo-cardiograms because you get to see your heart cheering you on; valves clapping and that constant rhythm of life. Then I took a pulmonary function test. I was a little nervous about it because of having had the fungal pneumonia in March and a chest infection this last round of chemo. What were my lungs really like after all that? I blew into a tube in different ways and then did a short Stairmaster type test. I was afraid to find out how bad things really were. I didn't want to face it, though I was a bit curious too.
It reminded me of when I worked in Adult Literacy. Often, adult students would come to us having no idea what they knew and didn't know about reading and writing and we'd have to find ways to test that so that we'd know where and how to start with someone, what group to have them join. For people who have been navigating the world without reading and/or covering up the fact that they weren't readers, well into their adulthood, this was tough. They were brilliant for being able to do it. And we were asking them to give all that up and face the struggle head-on so they could begin the learning.
I remember one particularly touching evening where I had a brand new student, probably 25 years old. He had a "Certificate of Completion" from the NYC public school system. That's for kids who were pushed through the system year after year, but could not complete the work and were too old to remain in school any longer. I asked him to write something and gave him a few choices of topics I was hoping would be inspiring. He looked at me like I was crazy and said, "But I can't write". I said, "Well, if you get stuck, draw a line and I'll come over and fill in the word for you". He said, "Wow!" and he sat down and wrote almost an entire page of lines, so fast I could hardly keep up with filling them in. It was like he was free. Free to write his story. I typed it up for him and he spent the next few weeks learning to read his own work. It was a really beautiful moment. For me at least...
There's something really good about finding out and admitting where you're at. I hardly ever do it. I want to reach into the future and always be better, do better. But really I have to ask, "Better than what?" If I don't gauge where I'm at somehow, how do I know where to go from there? It's like having an occasional heart-to-heart with yourself. "Where the heck am I at?'
I guess I can write about this because even though this transplant has been such a long time coming, I'm really at square one. I'm beginning something new. I have to accept where I'm at and work with it. I passed my tests so far and it seems I've bought myself a transplant. Lucky Day.
Wednesday 5 September 2012
Between Stations
I just had a fun three nights in New York with my Aunt Dee. Our hotel didn't have WIFI so I couldn't really blog. So I tried collecting in my mind bits and thoughts of things I might want to write about. And of course, since I didn't write them down immediately, or at least within 2.5 minutes, then these great thoughts were gone forever and I'm always left thinking, "What was I just thinking?" Sometimes I'll try to trace my thought-steps back to that brilliant nugget, and sometimes it will still be waiting there for me!
My brain works very strangely these days. I think it's between stations, playing two songs at once. There's the one song that's playing, "Oh this is such fun! I love Dee! And New York is so awesome!! TraLaLa..!" Maybe it's to the tune of, "I Could Have Danced All Night"
And then there's the chick bummer music that's playing, "Oh my God I'm having a transplant starting next week and my family is so far away and I miss my kids and Andy and how will I survive this?! AND I'm having a bone marrow biopsy tomorrow and what are the results going to be? I'm so nervous!!" I think this is probably accompanied by the music from the movie, Koyaanisqatsi. Not so melodic...
As we all learn with age and anxiety, we can try to fix the things we can control and let the other stuff go. And, of course, the thing that's easiest to control, and possibly the only real thing we can control, is ourselves. So if I pick the first and most pressing thing on my list, it would be the biopsy, but, I can't control that. But what I can control are the questions that I bring to Dr. Giralt tomorrow in our meeting. He'll for sure want to know if I'm interested in joining his clinical study.
At first, I thought, "Sure! Clinical Trial? Study? No problem! Where do I sign-up?" I trust trust trust these guys. I really do. And I would love to help them in any way I can. But then I started getting uncomfortable with the idea of being a guinea pig for setting dosage. Yikes. I have no problem donating my body to science, but I just don't want to do it now!
Arpine's sister Lisa emailed me her thoughts on the subject, having worked in the field and being a cancer survivor herself. I do not take her words lightly. She's adamant I look further into this and find out how this would benefit me. These were the preliminary questions she laid out for me:
How is this trial going to benefit me?
Can I get the same or similar benefit w/o being in a trial?
What are the risks associated with participating in this trial?
What dosage am I going to get?
Is it randomized?
Will I get the really really high dose? Where they're like, "Yep, that sure was toxic alright..!"
So I'll leave it at that for now. I'm back at Tracy's tonight, sleeping in her daughter's beautiful princess room while hearing the crickets outside. I LOVE sleeping to crickets. It a much better station and better song list than the one in my head...
Sweet Dreams,
Dina
My brain works very strangely these days. I think it's between stations, playing two songs at once. There's the one song that's playing, "Oh this is such fun! I love Dee! And New York is so awesome!! TraLaLa..!" Maybe it's to the tune of, "I Could Have Danced All Night"
And then there's the chick bummer music that's playing, "Oh my God I'm having a transplant starting next week and my family is so far away and I miss my kids and Andy and how will I survive this?! AND I'm having a bone marrow biopsy tomorrow and what are the results going to be? I'm so nervous!!" I think this is probably accompanied by the music from the movie, Koyaanisqatsi. Not so melodic...
As we all learn with age and anxiety, we can try to fix the things we can control and let the other stuff go. And, of course, the thing that's easiest to control, and possibly the only real thing we can control, is ourselves. So if I pick the first and most pressing thing on my list, it would be the biopsy, but, I can't control that. But what I can control are the questions that I bring to Dr. Giralt tomorrow in our meeting. He'll for sure want to know if I'm interested in joining his clinical study.
At first, I thought, "Sure! Clinical Trial? Study? No problem! Where do I sign-up?" I trust trust trust these guys. I really do. And I would love to help them in any way I can. But then I started getting uncomfortable with the idea of being a guinea pig for setting dosage. Yikes. I have no problem donating my body to science, but I just don't want to do it now!
Arpine's sister Lisa emailed me her thoughts on the subject, having worked in the field and being a cancer survivor herself. I do not take her words lightly. She's adamant I look further into this and find out how this would benefit me. These were the preliminary questions she laid out for me:
How is this trial going to benefit me?
Can I get the same or similar benefit w/o being in a trial?
What are the risks associated with participating in this trial?
What dosage am I going to get?
Is it randomized?
Will I get the really really high dose? Where they're like, "Yep, that sure was toxic alright..!"
So I'll leave it at that for now. I'm back at Tracy's tonight, sleeping in her daughter's beautiful princess room while hearing the crickets outside. I LOVE sleeping to crickets. It a much better station and better song list than the one in my head...
Sweet Dreams,
Dina
Saturday 1 September 2012
The Wide Rye Sky
Sat under a wide sky and watched a hawk seamlessly circle above me. Sailing. Hunting. Gorgeous. Can you see that little speck of hawk in the center there?
Then I cloud watched. The shape-shifting types. Caught a few on film. The sky was that deep September blue but there was still an August heat...
And this one is a prancing dog with a triangle head...
At around 4:00pm, the animals started perking up. Chipmunks, finches, a grey bunny sitting and glittering on a grey mica covered rock. I love it when nature comes to me. Like when a butterfly lands on your hat.
I could hear the road and the cars full of people doing stuff but I was so content to just lay under the sky, opening and then closing my eyes. Seeing in and seeing out. As cloud animals and airplanes floated by. The wind was so gentle, probably like what a baby feels being swung in a bassinet. It was a perfectly healing day.
For me, it's so easy to be in the moment in nature. Easier than anywhere else. Of course, this was easy nature. I didn't have to do anything. No blistery hiking boots. No rainy tent. Today was just colors, wind, sky and breath. I can feel my inner strength gathering. And I'm so grateful because my feeling is that, soon, I'm going to need a lot of it.
But right now, it's only this moment...
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