Did you ever see the movie "Unstoppable"? It's sooooo bad. But soooo good. It's should really be a comedy. It's with Rosario Dawson and Denzel Washington. What could be better right? It's a true, yet trumped up story about a runaway train, and it's hilarious! We couldn't stop laughing. And I can't stop thinking about it. We were in Paris this weekend and it was a choice on the hotel TV movie list. I almost wanted to watch it again in French. It would have been even funnier I'm sure. (Luckily "Anchorman" was also available. We went with that).
But back to unstoppable. It explains me right now. I'm a serious and true story, but all I can do right now is laugh about it. What else is there to do? All I can do is try to have as seriously a good time as I possibly can. I'm doing pretty well at it and it feels like a runaway train. But in a good way.
Paris and San Francisco are my top two metropolitan loves. And this is not to hurt the feelings of the other major cities I have lived in or been to. I just find these two to be so beautiful and fun and easy to enjoy. I'm such a sucker for beauty. (Shallow shallow girl). But anyway, I surveyed the family and here are the highs of their weekend in Paris:
Andy--Eiffel Tower. Advance tickets (excellent idea), up to the summit where we ate delicious chocolate, hung around and then slowly climbed the stairs down at a 5-year-olds pace. (A good pace for getting the full flavor for wherever you might be).
Isaac--An exhibit at the Grand Palais called "Game Story", about the history of video games. I have to say, I miss PONG. THAT was a fun video game...
Ari--his highlight was the push sailboats in the pond in the Tuileries. It's so old fashioned. I'm so glad he liked it.
And for me, it was a simple cafe meal with my family, cracking up at yet another silly game of Telephone. How can four people pass along a message and get it so wrong?!
So, as my Unstoppable train barrels ahead, I do think of the destination. I know the brakes will screech, and I'll stop at a hospital in London where I will get pretty much a new immune system. I won't start my countdown till December 1st. It's easier mathematically. Starting on November 27th is just too confusing. Meanwhile, I'm trying to gain weight (Paris was helpful in that, thank you), and get in shape at the same time. Haha. And at the end of this Thanksgiving week, I'm so grateful to all my friends and family who are along for the ride with me. All Aboard!
Sunday 27 November 2011
Thursday 24 November 2011
Strange Magic
I thought I would feel something about the fact that this was the day I was first scheduled to have my transplant. Today I was meant to feel crazy grateful and thankful. I loved the idea of having a transplant on Thanksgiving, but not having it on Thanksgiving is no big deal. Not a loss in any way. Sometimes life just floats along.
Oddly, cancer has made me just thankful for every day. It's now just usual. In fact, I'm relieved that my thankfulness and appreciation for life, has toned down a bit. I've gone through times when I could hardly get down the street because everything was so beautiful. So now, it's not that those things have changed, but I can get down the street better.
The recent good news is that my donor is able to donate their magic cells on the days my transplant team has suggested. So granted they pass their medical exam on the 5th of December, I will then begin treatment again on December 12th. I got this news yesterday. It has made me all nervous and excited, again. As I always re-learn, it's better to not think. So I won't.
We went to an American mass at St.Paul's Church today here in London. We had to weave through all the Occupy tents that are huddled right on the church grounds. It felt fascinating and weird. Part of me wanted to run off with them all, screaming, "Yes! There MUST be a better way!". And part of me just wanted to go have thanksgiving dinner in a warm beautiful place with people I love. Which I did. But, I DO hope there's a better way. A fairer way in this world for everyone to have a decent piece of the pie. Their signs were so peaceful. Except one (which I loved) which read "Compost Capitalism". Something so funny about that one...
Speaking of funny (ahh, my favorite subject). Here's a good one. So we're at a lovely Thanksgiving lunch at a fancy hotel. Our table was in the corner and behind us was a door with a window and a curtain on the other side of it. The kids couldn't see through it and were talking about what they thought might be behind the door. They decided it was MAGIC TOY LAND. So they're talking about Magic Toy Land and a waiter comes by and hears them and says, "Oh! Come with me. I'll take you!" So they promptly follow him out of the restaurant, take a left into the lobby and disappear. And we're thinking, "Ok, the kids have just disappeared with someone we don't know who said he was taking them to Magic Toy Land". You can imagine the Child Catcher jokes that ensued, etc... Then we thought, maybe they have a stash of toys at the hotel for the kids? Isn't that nice... Soon, saw the waiter return, but not the kids. Hmmm. They're taking a while... They finally show up and say "He took us to the bathroom." We were perplexed. Then we realized. Language barrier! He took them to THE MAGIC TOILET!!! Hahaha. So funny! No?
A Happy Happy Thanksgiving to everyone. I hope, if you like Thanksgiving, that today you felt loved and included.
And I send much love from our house to yours. Or should I say, from our Magic Toilet, to yours. Cheers.
Oddly, cancer has made me just thankful for every day. It's now just usual. In fact, I'm relieved that my thankfulness and appreciation for life, has toned down a bit. I've gone through times when I could hardly get down the street because everything was so beautiful. So now, it's not that those things have changed, but I can get down the street better.
The recent good news is that my donor is able to donate their magic cells on the days my transplant team has suggested. So granted they pass their medical exam on the 5th of December, I will then begin treatment again on December 12th. I got this news yesterday. It has made me all nervous and excited, again. As I always re-learn, it's better to not think. So I won't.
We went to an American mass at St.Paul's Church today here in London. We had to weave through all the Occupy tents that are huddled right on the church grounds. It felt fascinating and weird. Part of me wanted to run off with them all, screaming, "Yes! There MUST be a better way!". And part of me just wanted to go have thanksgiving dinner in a warm beautiful place with people I love. Which I did. But, I DO hope there's a better way. A fairer way in this world for everyone to have a decent piece of the pie. Their signs were so peaceful. Except one (which I loved) which read "Compost Capitalism". Something so funny about that one...
Speaking of funny (ahh, my favorite subject). Here's a good one. So we're at a lovely Thanksgiving lunch at a fancy hotel. Our table was in the corner and behind us was a door with a window and a curtain on the other side of it. The kids couldn't see through it and were talking about what they thought might be behind the door. They decided it was MAGIC TOY LAND. So they're talking about Magic Toy Land and a waiter comes by and hears them and says, "Oh! Come with me. I'll take you!" So they promptly follow him out of the restaurant, take a left into the lobby and disappear. And we're thinking, "Ok, the kids have just disappeared with someone we don't know who said he was taking them to Magic Toy Land". You can imagine the Child Catcher jokes that ensued, etc... Then we thought, maybe they have a stash of toys at the hotel for the kids? Isn't that nice... Soon, saw the waiter return, but not the kids. Hmmm. They're taking a while... They finally show up and say "He took us to the bathroom." We were perplexed. Then we realized. Language barrier! He took them to THE MAGIC TOILET!!! Hahaha. So funny! No?
A Happy Happy Thanksgiving to everyone. I hope, if you like Thanksgiving, that today you felt loved and included.
And I send much love from our house to yours. Or should I say, from our Magic Toilet, to yours. Cheers.
Tuesday 22 November 2011
"Occupy"
I just have to post this fantastic and hilarious letter written to me (well, my body) from my New Yorker, now San Franciscan, life-affirming friend Jeffrey. It's moving and funny and mirrors the OCCUPY movement in that it calls for a peaceful world revolution. (Not to be negative at all, but I do think a stem-cell transplant is an easier task...)
Occupy Dina's Bones: An open letter from the blood-forming cells of Doner #2
We represent our brethren who once happily inhabited your bones and swam through your veins and arteries -- We are the 99%, the dispossessed, the long-suppressed, the ones who got you to where you were for 40+ years and were then ostracized and marginalized by the 1%. We say today: “Enough with the 1%, the blasts that are Malformed and Abnormal, who now get 99% of the attention! Enough with the 1%, the abnormal platelets who think they can grow at whatever speed they want, crowding us out from our rightful place in your lovely body”
We are here to say that we're coming back to stay. This is OUR time now – and we want our fair share of representation.
With the 1% causing all the tsuris recently, our complaints have gone unnoticed. All we've been hearing about for this past couple of years has been stuff about low white and red blood cells, low platelets, and high number of leukemia cells ... well, WE’VE HAD ENOUGH !!! From now on, we’re going to make you listen to OUR complains, and our tsuris: you’ll go back to worrying about bad-hair days, Ari spilling paint on his pants at school, Isaac demanding yet another car or train for his collection, and Andy mumbling something like “what’s this 99% about anyway” …
So we're moving in ... Infiltrating … putting up our Tents in the inner depths of your Bones, from where we will send forth our mighty T-cells to fight the noble fight. Sure, some of us have long hair, we’re sometimes messy and uncomfortable, but we don’t carry CMV, despite what the media has been saying about us. And you’re going to Love us once you get used to us.
We say to the 1% - “Get ready, … and be Scared” … because we come in much greater strength than our brothers and sisters in theChemo Struggle who staged the earlier round of Occupy Dinas’ Bones. That was NOTHING compared to what we are capable of --- We have the power and the Conviction to eradicate the 1% PERMANENTLY …..
Friday 18 November 2011
Hope, Courage and Sqeakiness
So the good news today is that, through the persistence of emails, I found out that donor #2 has been contacted and is willing to donate. Phew! Yay! Thank you. Maybe donor #2 will soon earn the title of donor #1. It seems only fair, doesn't it? Or, so as not to ever forget the willingness of donor #1, I need to come up with a very dignified name for donor #2 that does not negate #1. Any suggestions?
A quick lesson was re-learned today about self-advocacy. The email chain to the transplant team here started like this: (abbreviated to make it pithy and interesting) "Hi. So is there any word?". Response, "No. We're still waiting to hear." Then me, "Could we at least find out if the donor has been contacted? They said they would begin that process on Monday. It's been a whole work week". Them: "Well, typically they will contact the donor and then set up dates and then contact us". Now, here is where you either accept this, or you decide to PUSH. Right? What would YOU do?
We've all been in this situation, not with transplant teams, thank god, but with other doctors, insurance companies, banks, schools, airlines. You name it. And as I learned over again today THE SQUEAKY WHEEL GETS THE GREASE! Because when I responded back, "I don't mean to be a pain, but isn't there a way to find out if they've accomplished the first step of making contact? Because if they haven't, maybe we should move on and go back to the registry and look for another donor." Well, golly, if I didn't have a response in 20 minutes that the donor was willing! Maybe I was running the risk of them telling me to bugger off. But they didn't I'm just saying, don't forget to squeak for yourself!
I read a book to Ari tonight given to me by one of the librarians (Steve) at school. It's called Courage, by Bernard Waber. It's for anyone to read, at any age. But he gave it to me of course because of the challenge coming up of the transplant. And it's a great book because it reminded me of how courageous we all are every day, without even taking notice of it. Anytime we feel a little nervous about something, but do it anyway, that's courage. It could be parallel parking in London, or trying mussels for the first time. Or it could be going in to discuss a matter with the principal. Or advocating for yourself! The thing is, we do it all the time. So if you're ever feeling like you had a wimpy day, I bet you could look back really closely and find something you overcame, or find a situation where you trusted yourself and went with your gut. It could be as insignificant as holding back on that extra clove of garlic for the sauce or taking the fish out of the oven on time. Or it could be as big as organizing a bone marrow drive or searching out a special book for a mom at school who you know could use some encouragement.
xxxx
Dina
A quick lesson was re-learned today about self-advocacy. The email chain to the transplant team here started like this: (abbreviated to make it pithy and interesting) "Hi. So is there any word?". Response, "No. We're still waiting to hear." Then me, "Could we at least find out if the donor has been contacted? They said they would begin that process on Monday. It's been a whole work week". Them: "Well, typically they will contact the donor and then set up dates and then contact us". Now, here is where you either accept this, or you decide to PUSH. Right? What would YOU do?
We've all been in this situation, not with transplant teams, thank god, but with other doctors, insurance companies, banks, schools, airlines. You name it. And as I learned over again today THE SQUEAKY WHEEL GETS THE GREASE! Because when I responded back, "I don't mean to be a pain, but isn't there a way to find out if they've accomplished the first step of making contact? Because if they haven't, maybe we should move on and go back to the registry and look for another donor." Well, golly, if I didn't have a response in 20 minutes that the donor was willing! Maybe I was running the risk of them telling me to bugger off. But they didn't I'm just saying, don't forget to squeak for yourself!
I read a book to Ari tonight given to me by one of the librarians (Steve) at school. It's called Courage, by Bernard Waber. It's for anyone to read, at any age. But he gave it to me of course because of the challenge coming up of the transplant. And it's a great book because it reminded me of how courageous we all are every day, without even taking notice of it. Anytime we feel a little nervous about something, but do it anyway, that's courage. It could be parallel parking in London, or trying mussels for the first time. Or it could be going in to discuss a matter with the principal. Or advocating for yourself! The thing is, we do it all the time. So if you're ever feeling like you had a wimpy day, I bet you could look back really closely and find something you overcame, or find a situation where you trusted yourself and went with your gut. It could be as insignificant as holding back on that extra clove of garlic for the sauce or taking the fish out of the oven on time. Or it could be as big as organizing a bone marrow drive or searching out a special book for a mom at school who you know could use some encouragement.
xxxx
Dina
Wednesday 16 November 2011
About those 100 days...
I guess it'll be more than 100 because this lead up is so dramatic and tacks on an extra month to the process. Originally I was going to go in and start today. But now it seems it will be December 13th, (they say). Which means that maybe the new cells will go in around the 21st (first day of Chanuka, by the way). And then the counting begins. One hundred days from then will be my most fragile. About 3 months. And then they say, you start feeling better and stronger.
The only thing I know is that the donor center that handles this donor has been contacted. I think this happened on Monday. So it is up to that center, where ever they are, to now contact the donor. And then the donor needs to be like, "Yeah! No problem! I'm not doing anything between Thanksgiving and Christmas! I'd LOVE to donate cells! And, I'm really healthy, by the way..." Ok? That's what we're all praying for now. So, if you're a prayer, I'd so appreciate it if you could throw this into the mix.
I wish I could get a clear picture on this second person. He or she is the second on the original list that the team in Chicago had found for me two years ago. They are a better fit for me than the second person the team found here. We hope to go with them because they are CMV negative. So, with that, I would not be at any risk for contracting CMV after transplant. It's not that it's not containable, but the medicine for it happens to slow down marrow production, which would slow down the healing process in general.
So, needless to say, it's a little of a pins and needles situation right now. It's best to keep my eye on the bigger picture. Like, when is Isaac's fever going to disappear? Or, when will I put those potted lavender plants into the ground for the winter. Or, we're going to Paris this weekend! Yay! I knew I moved to London for a good reason!
Bon nuit,
Dina
The only thing I know is that the donor center that handles this donor has been contacted. I think this happened on Monday. So it is up to that center, where ever they are, to now contact the donor. And then the donor needs to be like, "Yeah! No problem! I'm not doing anything between Thanksgiving and Christmas! I'd LOVE to donate cells! And, I'm really healthy, by the way..." Ok? That's what we're all praying for now. So, if you're a prayer, I'd so appreciate it if you could throw this into the mix.
I wish I could get a clear picture on this second person. He or she is the second on the original list that the team in Chicago had found for me two years ago. They are a better fit for me than the second person the team found here. We hope to go with them because they are CMV negative. So, with that, I would not be at any risk for contracting CMV after transplant. It's not that it's not containable, but the medicine for it happens to slow down marrow production, which would slow down the healing process in general.
So, needless to say, it's a little of a pins and needles situation right now. It's best to keep my eye on the bigger picture. Like, when is Isaac's fever going to disappear? Or, when will I put those potted lavender plants into the ground for the winter. Or, we're going to Paris this weekend! Yay! I knew I moved to London for a good reason!
Bon nuit,
Dina
Tuesday 15 November 2011
What to do With Garbage
I can't stop thinking about this artist, Ben Wilson, who Ari and I almost tripped over on our way home from school a few weeks ago. I first noticed him on my way there just walking by. He was a big presence. He had so many colors of paint wiped onto and all over his painters pants, I just had to say, "I love your colors". "Many thanks!", he said back. And that was that. I remember being a tinge jealous because I love to paint and I use tons of colors when I do. But I don't do it often enough at all. And here was this guy, totally immersed and just wearing his color-stained clothes doing whatever it is he does.
After I collected Ari from school, we were heading home and at the end of the block, there was the same guy I'd noticed just 15 minutes before. But now he was lying face down on the ground taking up a lot of sidewalk space. He was staring straight into the sidewalk. First I thought, "Oh my god the nice painter guy fell down. That's so weird!" There were a few people around him with their iPhones out taking pictures. Then I saw this gorgeous small palette of colors and a blow torch. Further investigation was absolutely in order. We learned that he was painting old disgusting pieces of gum stuck on the sidewalk. Yuck!
If you live in a city, the next time you go out, take a look at the sidewalk for gum. There are black spots of ancient pieces of discarded gum everywhere. I looked around that day and couldn't even figure out how this guy could pick which ones to paint; there were so many choices! But that day, he chose to adorn one not far from our school entrance. He paints littles designs or messages using enamel paints and then heats it till it's really in the gum and so just stuck there forever. He makes these gross pieces of discarded trash into these charming works of art accessible to everyone (or at least to observant people).
This is a brilliant example of what to do when life gives you garbage. No matter how gross or messed up things are, there's always an opportunity. His little pieces of art prove it. He proves that you can figure out a way to take the essence of a "problem" and make something better or completely different out of it.
If you can, copy and paste the link at the bottom of this entry and it'll take you to a New York Times article about Ben Wilson.
Thanks for reading today. Just didn't feel like writing about bone marrow transplants, even though they are also very cool.
Still got Frampton stuck in my head. "Putting my heart on the line...Show me a sign...". I'm definitely looking for a sign. Even just something little would be fine.
Link to Ben Wilson:
http://www.nytimes.com/2011/06/14/world/europe/14muswell.html?_r=1
After I collected Ari from school, we were heading home and at the end of the block, there was the same guy I'd noticed just 15 minutes before. But now he was lying face down on the ground taking up a lot of sidewalk space. He was staring straight into the sidewalk. First I thought, "Oh my god the nice painter guy fell down. That's so weird!" There were a few people around him with their iPhones out taking pictures. Then I saw this gorgeous small palette of colors and a blow torch. Further investigation was absolutely in order. We learned that he was painting old disgusting pieces of gum stuck on the sidewalk. Yuck!
If you live in a city, the next time you go out, take a look at the sidewalk for gum. There are black spots of ancient pieces of discarded gum everywhere. I looked around that day and couldn't even figure out how this guy could pick which ones to paint; there were so many choices! But that day, he chose to adorn one not far from our school entrance. He paints littles designs or messages using enamel paints and then heats it till it's really in the gum and so just stuck there forever. He makes these gross pieces of discarded trash into these charming works of art accessible to everyone (or at least to observant people).
This is a brilliant example of what to do when life gives you garbage. No matter how gross or messed up things are, there's always an opportunity. His little pieces of art prove it. He proves that you can figure out a way to take the essence of a "problem" and make something better or completely different out of it.
If you can, copy and paste the link at the bottom of this entry and it'll take you to a New York Times article about Ben Wilson.
Thanks for reading today. Just didn't feel like writing about bone marrow transplants, even though they are also very cool.
Still got Frampton stuck in my head. "Putting my heart on the line...Show me a sign...". I'm definitely looking for a sign. Even just something little would be fine.
Link to Ben Wilson:
http://www.nytimes.com/2011/06/14/world/europe/14muswell.html?_r=1
Monday 14 November 2011
Unwrapping and rewrapping
Well, I spent the weekend unraveling the idea in my mind of my perfectly timed transplant that included the Hallmark Card coincidence of getting my new cells on Thanksgiving Day. It was really nice to think about that way. Like a professionally wrapped present sitting under a tree.
It's funny, these expectations of perfect endings. They really just trip me up. Why would a transplant be any more special on Thanksgiving Day than another day? It's not. It's an awesome thing EVERY day. And the great thing today is that it seems that there has been another very good match found for me! So now I am rewrapping my mind around having a transplant at the beginning of December. But again, all things must fall into place. This person was actually found and contacted two years ago when they searched for me in Chicago and I decided against doing the transplant. Andy recontacted Chicago to ask about these donors that were found and it hastened this subsequent search tremendously. This #2 just needs to be contacted again and hopefully will be willing again. I would be, wouldn't you?
This is a short entry today. I feel like I've been on some sort of constant merry-go-round and finally, it's slowed down, and it's quiet, and I can think again. Because even though I was spending all the time "not thinking", I admit, I was worried. And now that the scenery has changed, I'm relieved. And I can go back to not thinking again.
So wrap up warm tonight and sleep tight,
Dina
It's funny, these expectations of perfect endings. They really just trip me up. Why would a transplant be any more special on Thanksgiving Day than another day? It's not. It's an awesome thing EVERY day. And the great thing today is that it seems that there has been another very good match found for me! So now I am rewrapping my mind around having a transplant at the beginning of December. But again, all things must fall into place. This person was actually found and contacted two years ago when they searched for me in Chicago and I decided against doing the transplant. Andy recontacted Chicago to ask about these donors that were found and it hastened this subsequent search tremendously. This #2 just needs to be contacted again and hopefully will be willing again. I would be, wouldn't you?
This is a short entry today. I feel like I've been on some sort of constant merry-go-round and finally, it's slowed down, and it's quiet, and I can think again. Because even though I was spending all the time "not thinking", I admit, I was worried. And now that the scenery has changed, I'm relieved. And I can go back to not thinking again.
So wrap up warm tonight and sleep tight,
Dina
Sunday 13 November 2011
Hum De Dum De Dum...
I feel very calm for someone who's waiting around to see if their second stem cell donor is really a match, really available and really willing. It's kind of like hyper-suspension-limbo-land.
Everything's OK. Everything just moves along. I can be in my life. I'm not sick, BESIDES THIS COUGH!!! (Ok, you can tell THAT'S bothering me!). But, the weekend was normal. Went to the Royal Airforce Museum. Went to puppy class. In fact, going to see Peter Frampton tonight! Frampton Comes Alive from beginning to end. Same as 6th grade. Except without the hair. Neither he nor I have much now.
But I must say that having my first donor need to step out has made me understand the potential gravity of the situation. I'm officially not one of those people where a donor just easily pops off the registry into my lap. There is now some tension here. But it's nothing like the fear that someone who does not have any obvious matches might feel. For me, I am very hopeful, (quite confident in fact) that a 10 out of 10 match will be found for me. I think this is mostly because I'm 100% Jewish in ethnicity. There are a lot of Jews on the registry. Which is so fantastic. It's more difficult for the many people who have nasty blood diseases that are of mixed race or of ethnicity that doesn't tend to join the registry. It's so sad. Horrifying really. That there could be a cure for each of them but there isn't because there's no match. I do not mean to be Debby Downer here. There is something so simple everyone can do! Register! And after you're done, pass it on how good you felt about doing it! You, or a friend of yours, might be able to save someone's life!!!! That ain't no joke!
If you're in the UK you can register with The Anthony Nolan:
If you're in the US you can register with Be The Match http://marrow.org/Home.aspx
At least check out the websites to see what it's all about. It's cutting edge medicine. There are 18M people registered worldwide. A giant thank you to my dear heart Kaethe Zellner who is organizing a bone marrow drive in Colorado. And giant thank you's to everyone who has registered since I've been diagnosed. Off the top of my head that is: Kaethe, Gordon, Allison, Susanne, Jenny, Elsie, Mark, Adam, Andrea, Alexa, Heidi, Abby, Mary and Laura and Saul. If I missed you, or if you decide and go register, than please leave me a comment and let me know! It'll make both of us feel really good.
Lots of love from sunny London today. Maybe take another listen to Frampton's "All I Want to Be (Is By Your Side)". It's an astonishingly beautiful song.
Cheers,
Dina
Friday 11 November 2011
11/11/11
The western world is partying today. It's a very cool date. You can't deny it. At the very least, it's just really fun to write it. 11/11/11. I was trying to make a connection to this day. I was thinking of a good way to spend it. Originally I had a nice lunch date planned with two friends. Then, last night, I did something I'd never done before. I took Night Nurse... And anyone who's ever had any interactions with Night Nurse seems to know exactly what I'm talking about. You tell them and they say, "Ohhhh, Night Nurse. Yeah, you gotta be careful with that..."
Somewhere along the line, I remember someone recommending Night Nurse. But I just couldn't go there. The name sounds like a porn movie and I just didn't see myself being able to take it without choking on hysterical laughter. But desperate times pushed me to desperate measures and I walked into Boots pharmacy yesterday and asked for it. No one laughed at me, they just handed me the jar from over the counter. And last night at 11:30, I took 20ml of Night Nurse. And Bam! I was OUT! I slept sitting up all night in the Eames Chairs (better for not coughing) and I didn't even notice it. The alarm rang at 7:00 this morning and I could NOT believe it. I literally woke up drunk. This stuff should be sold on the streets, not in drug stores!
I literally could not move. I managed to get Ari dressed. Andy took the kids to school. I went back to sleep. I missed the puppy training session at 11:00. I missed lunch with friends at 12:00 and finally woke up at 1:00 in the afternoon. So as I stare at the 11/11/11 trying to relate on this fine day, all I see are 3 cute little beds to curl up into. I'm thinking I'll try again to be more party-ful next year. On 12/12/12.
It started like this. I've had this cough. It's been weeeeeeeks! And it's worse at night. So I've been taking cough medicine every night before I go to sleep. When I first get a cough here in the UK, I usually try every cough medicine brand under the sun. And then, I give in and dip into our Nyquil reserves. The supply is not abundant and highly coveted, having been either smuggled into the country in a suitcase or shipped in via a large tax at the border. At this point there's only a bit left!
Somewhere along the line, I remember someone recommending Night Nurse. But I just couldn't go there. The name sounds like a porn movie and I just didn't see myself being able to take it without choking on hysterical laughter. But desperate times pushed me to desperate measures and I walked into Boots pharmacy yesterday and asked for it. No one laughed at me, they just handed me the jar from over the counter. And last night at 11:30, I took 20ml of Night Nurse. And Bam! I was OUT! I slept sitting up all night in the Eames Chairs (better for not coughing) and I didn't even notice it. The alarm rang at 7:00 this morning and I could NOT believe it. I literally woke up drunk. This stuff should be sold on the streets, not in drug stores!
I literally could not move. I managed to get Ari dressed. Andy took the kids to school. I went back to sleep. I missed the puppy training session at 11:00. I missed lunch with friends at 12:00 and finally woke up at 1:00 in the afternoon. So as I stare at the 11/11/11 trying to relate on this fine day, all I see are 3 cute little beds to curl up into. I'm thinking I'll try again to be more party-ful next year. On 12/12/12.
Good Night, Nurse.
Wednesday 9 November 2011
Hmmmm. Glitch.
Well, everything I have ever learned about staying cool, keeping in the moment, thinking positive, or not thinking at all, has got to be applied right now. BIG TIME. My donor did not pass their physical exam and can not donate. They've been removed from the bone marrow registry. I found this out today at around noon.
When the transplant nurse, Kim, first told me, I really didn't feel a thing. My first reaction was that I felt bad for the donor. I hope they're OK. That certainly must be worrisome for them. I talked a bit more with the nurse, left the hospital, and sort of walked, stunned, out into the day. I sat on a bench outside a cafe and had some sweet potato, coriander, and coconut soup. (Doesn't that sound good? It was). I met a mom whose 23-year-old daughter was in the hospital getting treatment for cancer. I liked her. She was calm too.
There are cures for cancer. They are quite complicated. But some of them work. Like transplants. So, getting back to transplants, now that it's midnight, and I'm trying to apply everything I know about NOT thinking, I will simply document what is going on. Because that is what part of this blog will be; a picture of how all this pans out. And maybe a reader will be able to glean something important in between my blogging and my Blah Blah + Hogging.
So, there is another 10/10 match they found for me. They are CMV (Cytomegalovirus) positive, not CMV negative, like me, so it means some extra medicine for me so that I do not get this virus after transplant. So this is pretty close to perfect. This person has not been contacted at all. The donor organization will begin making contact tomorrow and I should hopefully know something by Monday, if not before. I hope it's something good, like, yes they'd like to donate. Yes, they're available soon and it's all wonderful. But this a person. People are very complicated. And one human helping another in this case isn't simple or easy. There is so much that has to be right, that has to go right. The medical exams don't happen until it's very close to the donation date, because if they do them too far in advance, who knows, someone could contract some kind of yucky disease between the time of their medical exam and their donation and pass it on to the recipient. The transplant nurses said they have not seen donors fail medical exams very often. They seemed quite sure this second one will work out.
So that's the story I'm going with. I'm quite sure the second one will work out too. I've got a bit of fudge time. My last bone marrow biopsy showed a complete remission. Number 2, I 'm waiting for you. Godspeed!
I remain faithfully yours, by not thinking. Dina.
Tuesday 8 November 2011
It was ok till the bloody fingerprints...
This one goes out to Andrea Taetle, a closet stand-up comedian (sorry to OUT you Andrea). It's a small story about trying to find a nice place to stay in London. My dad and step-mother were coming to see me while I was in the hospital and I was concerned about their staying at my house because there A LOT of steps. My father, God bless him, is 89 and 3/4**(see below).
We soon learned that finding a place in London for 10 days that won't break your back or your bank isn't easy. So my stepmom did the best she could, perusing hotels on the internet. When she finally made a reservation at some B&B, I got to snooping around, specifically on Trip Advisor, nothing too in-depth in my search, and got worried at the lack of stars that sat next to the hotel's name.
I started reading the comments..nothing too bad. A bit noisy... Not that well-vacuumed... And then I came to the bloody fingerprints. Not the type where a British person might be frustrated while trying to clean some newsprint off the doorjamb, yelling, "these bloody fingerprints!". No. These were actually bloody fingerprints! On the wall! In the room! Yikes! And there went THAT reservation (talk about having reservations. Hahaha). That just isn't good PR...
Needless to say, they switched hotels. So, next time you travel and something just isn't right, do what my friend Susanne did when we were in Paris and having our one surly Parisian experience (there always must be one per trip) at a Chinese restaurant. (Please don't ask why we were having Chinese in Paris. The answer is: we had kids with us). In order to get some friendlier service, despite language and cultural barriers, she said, "I have two words for you. 'Trip Advisor'". And our meal was much better after that!
** I think when you get to be 89, it's ok to do that thing that new parents do. Like saying, "Oh, he's 22 months. Isn't he cute?" And you're thinking, "What's 22 months? Why don't they just say, "almost two" or something like that? But those months are earned. More for the parents than for the kids... But when you're 1,078 months, like my father, those are earned too. Hence the 89 and 3/4...
Monday 7 November 2011
Dinner with Panos
He's the nicest hematologist on the planet. He's now officially a friend and we discuss transplants over wine and olives. He's not at the hospital I chose to do my treatments at but he so gracefully stays in touch with me and clearly cares about us. He's also quite funny, and when we're not talking transplant, we get to talk Greek politics, neither of which are that straight forward or have obvious outcomes. But, unlike Greece, I am a very willing recipient and I have a great attitude toward any donations (haha).
I must say though, that after speaking with him, there is definitely a chance that this whole process could go quite smoothly. It's not a done deal that I'm going to be feeling horribly for months or anything like that. So, I'm going to go with that story. And anyway, if I do feel bad, it's all so temporary. I know from experience. Bodies heal. You just do begin to feel better!
One thing he mentioned is, no couch-potato-ing. I need to walk at least a kilometer a day (whatever that is...). And he's a big believer in talking. I should ask my questions, say how I feel in all ways. Should I clone him many times and sprinkle him around the U.S? Could use a few docs like that, no?
I must say though, that after speaking with him, there is definitely a chance that this whole process could go quite smoothly. It's not a done deal that I'm going to be feeling horribly for months or anything like that. So, I'm going to go with that story. And anyway, if I do feel bad, it's all so temporary. I know from experience. Bodies heal. You just do begin to feel better!
One thing he mentioned is, no couch-potato-ing. I need to walk at least a kilometer a day (whatever that is...). And he's a big believer in talking. I should ask my questions, say how I feel in all ways. Should I clone him many times and sprinkle him around the U.S? Could use a few docs like that, no?
Oh, and by the way, I finally Googled "Blog" and it is NOT an amalgam of Blah Blah and Hog. It's just a weblog. That's all.
And finally, I have been collecting comedy ideas. The suggestions come rolling in and just for your info, the top two most often suggested are definitely Modern Family and Best in Show, with 30 Rock taking the bronze.
Peace
Saturday 5 November 2011
Continued magic
So, when the brand new stem cells from my generous donor enter me, my bones will magically suck them through their hard cases and bring them right into their centers, where the cells will then know to make bone marrow and that new bone marrow will make blood which will include T-cells that will fight Leukemia. The doctors will monitor that that's all they fight and if they get too rambunctious, fighting other things inside me, then there are medicines to control that. I imagine at one point this blog might begin to sound like an old geezer, listing my ailments and medicines, as though that's the most interesting thing in the world.
My rock of a husband, Andy and I just got back from a nice breakfast. And already we've looked up quite a few things on the internet! Such as, how much did Brigit Jones Diary 2 make? Watched it last night. Pretty bad. But it grossed $222 million, mostly outside the U.S. Unbelievable! We also looked up how to deal with lice. Kindergarten has it. I spent £150 yesterday at the nitpickers. Thank goodness for them! And then we Googled the nearest outlet store to buy new blankets for the beds. More magic!
Friday 4 November 2011
What is a blog anyway?
I've only recently decided to embrace technology. I realize it's in my best interest. My kids love their games and their computers. I've been able to keep relatively well in touch with all my friends and family, despite having moved to another country and living in a faraway time zone. And who can't admit to saying, "Let's look it up!" like ten times a day? So, despite the fact that I really think my kids should be banging on homemade drums in the forest and playing all sorts of "imaginative games" (like WE did...), I realize, they play differently now, and that ain't going away... So, that said, I've decided that I will blog my way through my stem cell transplant. Honestly, I don't really know what a blog is, but after this entry, I promise to "look it up!"
So, to 100 days and beyond for me. Right now 100 days feel long. And worrisome. And includes a long dark London winter. And stretches over Thanksgiving and Christmas and New Years. And it's all unknown to me. I figure the best thing I can do is give myself something to do. So, maybe, one day, when I'm way past 100 days, and I meet another person who's about the have a transplant, I can be all cool and say, "Hey, you should check out my blog. It really helped me. Maybe blogging might help you too."
Welcome to my blog. I hope you join me here often, because so far, being joined by friends and family, community and professionals, has been my absolute saving grace. Thanks for reading.
For the first time, since this whole diagnosis of Acute Myeloid Leukemia, I am just beginning to own it. Not in an "it's mine, you can't have it!" kind of way, but more in an, "Ok, I can not deny the existence of the need for this transplant any longer". This is not a light thing. I've been through so much treatment and learned so much about being a patient, being patient, the vast abilities and limitations of modern medicines, and faith. So now, as my treatment continues, I guess I am thinking of the best ways to do it.
If you are just coming to this story, here's a little bit of background. In 2009 at the age of 46, I was completely blindsided by a cancer diagnosis. My family was living in Chicago and getting ready to relocate to London, England. I had a 3-year-old son, a 9-year-old son, and a 14-year-old marriage. Busy with little ones, I went to my OB for some check-ups before we moved because I had no idea how quickly I'd be finding a doctor for myself in London. I was fit, a yoga teacher and ate extremely healthfully.
I then got a call from my OB saying the lab screwed up and I should come do my bloodwork again. So I did. And apparently, the lab did not screw up. My white blood cells were crap. The doctor referred me to a hematologist at Northwestern Memorial Hospital who gave me an appoint two months out. I said, "Are you sure it's ok to wait that long?" He said, "Sure! Go enjoy your summer." So I did. I did not have a single symptom. Not one. Unless you consider getting breathless while you're pushing a stroller with a three-year-old in it up around the hills of Presido Park a symptom. Which I didn't.
Scroll forward two months later on a Friday, they retake my blood, give me a bone marrow biopsy and diagnose me with AML. So on the following Monday, instead of going to London to look at housing, I'm packing a bag to go into the hospital for six weeks for an induction round of chemotherapy that we all hope will put me in remission. The brakes on life had just been applied. All our lives. My family and my friends.
The tears and fears and shock and the outpouring of love were all overwhelming. I was forced to take myself and my health very seriously. I was forced to ask for a lot of help. And I had to watch myself go from highly functioning to highly dependant in a minute. My family went from excited about an adventurous move to paralyzing horror in just over a weekend. It was head spinning.
Induction for me included three different chemotherapies, some slowly dripped into me, some injected, and one an ungodly color red. After six weeks inside a hospital during the most gorgeous Chicago Autumn weather I ever stared at through a window, we found out I was in remission. These six weeks included an emergency operation for appendicitis while having no immune system and a full understanding of what exactly being neutropenic is. Chemotherapy for AML completely blows out your immune system. It has to. It's trying to reset your bone marrow altogether and because you don't want any of those bad boys hanging around. So while you're waiting for your system to rebuild, you're vulnerable to everything. But mostly you're vulnerable to bugs that live inside all of us all the time that our immunities just handle for us every day. Thanks immunities!
In the midst of this massive life change, we had to make a massive decision. We had to decide what my cure was going to be. For most people, this is not a conversation. It's typically obvious and there's very little discussion. My AML was an intermediate case. And the doctors couldn't ethically dictate a transplant because a transplant can kill you. The thing is, if it works, your relapse risk is much lower. And never before had I wished more that I'd gone to medical school. My lovely doctor Marty Tallman said, "If you were my wife or daughter I'd tell you to do the transplant". And as we went on to get five more opinions there was no consensus. Three for transplant three for chemo. We were a mess. Ultimately I followed the voice that came to me while I sat quietly and just tried to clear my mind. It said, "Do the chemo, it will save your life."
So I did the chemo. My induction was followed by 5 more rounds of chemotherapy, each, a one week stay in the hospital. And always sadly followed up by some sort of an emergency stay because something somehow will always inevitably go wrong when you don't have an immune system. It could be pneumonia, a cold, bone pain. Anything. But the chemo worked and a year later, we were off to England. And then a year later, I relapsed.
I have now entered the AML world in London and I have now done even more chemo which has put me into remission again and I am headed toward transplant. After a meeting last week with the transplant nurses, I got a clear idea of the process I'm embarking on. The way a transplant works is magical and gives me chills. The magic begins (sounds very Disney) with my donor. Strictly a good human being. Being a good person is not magic, but when good people do good things, it is. And I'm referring to all the people on the Bone Marrow Registry all around the world. And after they've searched through these 15 million Registry members, this person and I match. We have 10 proteins that are exactly the same. This is not common for unrelated people. In fact, even for siblings, there's no guarantee. Plus, this person is available, healthy, still willing to donate since the day they registered, and they are going to save my life. So, as I said, this is not light stuff.
If you are just coming to this story, here's a little bit of background. In 2009 at the age of 46, I was completely blindsided by a cancer diagnosis. My family was living in Chicago and getting ready to relocate to London, England. I had a 3-year-old son, a 9-year-old son, and a 14-year-old marriage. Busy with little ones, I went to my OB for some check-ups before we moved because I had no idea how quickly I'd be finding a doctor for myself in London. I was fit, a yoga teacher and ate extremely healthfully.
I then got a call from my OB saying the lab screwed up and I should come do my bloodwork again. So I did. And apparently, the lab did not screw up. My white blood cells were crap. The doctor referred me to a hematologist at Northwestern Memorial Hospital who gave me an appoint two months out. I said, "Are you sure it's ok to wait that long?" He said, "Sure! Go enjoy your summer." So I did. I did not have a single symptom. Not one. Unless you consider getting breathless while you're pushing a stroller with a three-year-old in it up around the hills of Presido Park a symptom. Which I didn't.
Scroll forward two months later on a Friday, they retake my blood, give me a bone marrow biopsy and diagnose me with AML. So on the following Monday, instead of going to London to look at housing, I'm packing a bag to go into the hospital for six weeks for an induction round of chemotherapy that we all hope will put me in remission. The brakes on life had just been applied. All our lives. My family and my friends.
The tears and fears and shock and the outpouring of love were all overwhelming. I was forced to take myself and my health very seriously. I was forced to ask for a lot of help. And I had to watch myself go from highly functioning to highly dependant in a minute. My family went from excited about an adventurous move to paralyzing horror in just over a weekend. It was head spinning.
Induction for me included three different chemotherapies, some slowly dripped into me, some injected, and one an ungodly color red. After six weeks inside a hospital during the most gorgeous Chicago Autumn weather I ever stared at through a window, we found out I was in remission. These six weeks included an emergency operation for appendicitis while having no immune system and a full understanding of what exactly being neutropenic is. Chemotherapy for AML completely blows out your immune system. It has to. It's trying to reset your bone marrow altogether and because you don't want any of those bad boys hanging around. So while you're waiting for your system to rebuild, you're vulnerable to everything. But mostly you're vulnerable to bugs that live inside all of us all the time that our immunities just handle for us every day. Thanks immunities!
In the midst of this massive life change, we had to make a massive decision. We had to decide what my cure was going to be. For most people, this is not a conversation. It's typically obvious and there's very little discussion. My AML was an intermediate case. And the doctors couldn't ethically dictate a transplant because a transplant can kill you. The thing is, if it works, your relapse risk is much lower. And never before had I wished more that I'd gone to medical school. My lovely doctor Marty Tallman said, "If you were my wife or daughter I'd tell you to do the transplant". And as we went on to get five more opinions there was no consensus. Three for transplant three for chemo. We were a mess. Ultimately I followed the voice that came to me while I sat quietly and just tried to clear my mind. It said, "Do the chemo, it will save your life."
So I did the chemo. My induction was followed by 5 more rounds of chemotherapy, each, a one week stay in the hospital. And always sadly followed up by some sort of an emergency stay because something somehow will always inevitably go wrong when you don't have an immune system. It could be pneumonia, a cold, bone pain. Anything. But the chemo worked and a year later, we were off to England. And then a year later, I relapsed.
I have now entered the AML world in London and I have now done even more chemo which has put me into remission again and I am headed toward transplant. After a meeting last week with the transplant nurses, I got a clear idea of the process I'm embarking on. The way a transplant works is magical and gives me chills. The magic begins (sounds very Disney) with my donor. Strictly a good human being. Being a good person is not magic, but when good people do good things, it is. And I'm referring to all the people on the Bone Marrow Registry all around the world. And after they've searched through these 15 million Registry members, this person and I match. We have 10 proteins that are exactly the same. This is not common for unrelated people. In fact, even for siblings, there's no guarantee. Plus, this person is available, healthy, still willing to donate since the day they registered, and they are going to save my life. So, as I said, this is not light stuff.
In the transplant meeting, I learned that the first 100 days after the transplant are the most fragile. So, that is how I came to name this blog. It came to me when Ari, my five-year-old, standing on the edge of the love seat, toes gripping the arm, found his balance, arms outspread, glowing flashlight in one hand, took a giant leap toward the couch yelling "To infinity and beyond!"
So, to 100 days and beyond for me. Right now 100 days feel long. And worrisome. And includes a long dark London winter. And stretches over Thanksgiving and Christmas and New Years. And it's all unknown to me. I figure the best thing I can do is give myself something to do. So, maybe, one day, when I'm way past 100 days, and I meet another person who's about the have a transplant, I can be all cool and say, "Hey, you should check out my blog. It really helped me. Maybe blogging might help you too."
Welcome to my blog. I hope you join me here often, because so far, being joined by friends and family, community and professionals, has been my absolute saving grace. Thanks for reading.
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