It turns out, I wouldn’t. The Guy has relapsed. And now, well, I don’t know. I have to wait and hear what happens next. I’m not a doctor. I can’t predict what his chances are of staging another comeback. I don’t know. I feel very sad for his family. This has been a horrible roller coaster and an unrelenting one.  I didnt even know if it was going to go through this morning, so I dont think I feel as upset as I otherwise might have. I think I was beginning to get happy about it, but it’s been such a twisting thing.

I just really bad for him and his family.

There isn’t a lot of rhyme or reason to a lot of what happens, like this guy getting so close to the thing he really needed and then this happens.  I mean, he was five days away this time. ..I don’t know. It’s not in my hands. We all just have to try to do the best we can when we can. 

I know this is sort of coming across like, all considered, a negative thing to be involved in - but it isn’t.   I really, really urge people to visit BeTheMatch.org and get on the registry. You could save a life. That’s a pretty cool thing to do.

Thanks to everyone who’s been following this story.   I’ll keep you posted.

-Beth

Superman Obi Wan Muhammed Ali Houdini 2012, we are approaching the launch pad….

For some reason, I’ve read a few articles this week about child labor and sweatshop labor in China (Foxconn, look into it…) and in the African chocolate industry. I’ve read about this stuff and even blogged about it before. You know about it, too, perhaps.

I got discouraged by the comments after the articles. A lot  “They need to feed their families. And it’s better than sex slavery.”  And “ I worked when I was a kid.”  And “ The company has to make the best profit and Americans want cheap goods.” And ” It’s just the way of the world. What am I supposed to do – NOT buy this or that? C’mon.”

Here are a few points that occured to me upon reflection:

I agree. Any job is better than being a sex worker, particularly if you’re a kid. 

I agree. Child labor is a complicated situation because a lot of families do need their kids to work in order for the family to subsist and going in and ripping kids out of jobs could have a very serious impact on families.

But:  It’s absurd to insist  it’s either sweatshop and/or borderline field slavery or prostitution.  People who own manufacturing companies and farms and mines, and the people who buy their raw materials or use their labor to make goods – have a choice about the conditions and the pay they offer and  what they consume. And they are choosing to go in the worst direction to make their own lives better at someone else’s expense - - because desperate people will do anything.

And: if a family is so poor that it must sent its 10 year old to work, there is a systemic problem in that society. Does this kind of set-up help change that system?  There are organizations who argue that the poverty wages paid by some manufacturing plants (this has been argued about Haiti) will NOT allow the people to eventually rise up to the middle class and will only keep them poor.

 More to the point, if kids must go to work not school, how do they ever learn to be doctors, computer scientists, business people, or anything but a sweatshop laborer or slave wage farm hand?

As for the last point: it’s just the way of the world. There’s nothing we can do about it.  We’re not going to stop buying this or that.

Well, ultimately, people can either believe in changing things and take up responsibility for their role in the world, or they can shrug it off and keep going , as is.  I think most of us do a combination of both.

I think when it comes to kids and poverty and their lives sucking, for lack of a better word, I have done too much shrugging . I waant to make 2012  a year where my shrugging stops and  where I learn to spend my time finding what I can do, and do it, instead of wasting mental energy getting upset about cynical statements by others people. Waste of time.

THE STANDARD

I did read one anonymous person on a message board who made a very cool and inspiring and simple statement: he or she recapped how Chinese workers are treated in this one company and said  “If it’s not good enough for me, why is it good enough for the Chinese?’   And of course the answers may be versions of the above points which all boil down to “they’re more desperate than you are. ”   But it gave me a clarification of my internal standard, if that makes any sense, and something I think of sometimes in general with kids and poverty and that is:

If a situation isn’t good enough for my nieces and nephews, it  isn’t  good enough for any kids. 

 I don’t want my nieces and nephews out of school, doing manual labor. I don’t want them picking through toxic trash. I don’t want them in neighborhoods where people are getting shot. I don’t want them eating crappy food. I can’t picture them eating jjust one meal a day. I can’t picture them living on the streets or in cars. I can’t imagine if the girls couldn’t go to school because they were girls, or my oldest nephew was put in an army at age almost 10.  And it is not acceptable to me, my nieces and nephews being sick and unable to see a doctor, or get medicine, or get stitches, or to their lives be threatened by diarriahal diseases or lack of vitamins or because their water isn’t clean. Unacceptable.

That has to be the standard.  That is the standard.

 Obviously, not everything is something I can do something about. But not being able to do everything about everything doesn’t mean I can’t do something about something. And if I stop believing I can do anything about anything, well, might as well hang it up.

So here are my goals:  Just say no to cynicism. Keep in my mind “the standard.” Learn and get involved.

As for you? So many people I know are parents with big hearts already working to help other kids in your community.You have already looked beyond your own offspring.  What kid-helping things do you want to do in 2012? What do you reccomend? What things bother you when you see them?  A new year. New opportunities. New goals. 

One of my goals is also, a year from now, have some concrete stuff  to point to saying I got off my butt and did my bit. We’ll see.

Here’s to 2012 being a busy year.

If it’s a go, I’m off to Boston that very day for my first shot of what I like to call  “stuff to make me super-produce blood stem cells.”  Then three days of shots at home.

And then Friday the 27th is D-Day and I think the next day is when Superman gets the transplant. As I mentioned before, they call it his “Day Zero.”  That’s so they can count from there to chart his progress. For example, “You’re at Day 30 and you’re doing good” when he hits the one month mark. In other words, when he gets the transplant, he still has a long way to go. The transplant he’s fought so hard to get to is, in a way, just the start.

That’s really been sticking with me lately: Day Zero. Just get to Day Zero, Guy.

(Please consider getting on the marrow donor registry today.)

While I’m here, let me put up the link to  my PBSC donor entries in order. The main point of this blog  is to let anyone who stumbles upon it see how the process works, how it’s doable, how it’s important. So I wanted to let people start at the start ’cause it’s getting kind of long.

START HERE  and then follow the “previous page” arrows which bring you more and more current. Kind of like Back to The Future. lol.

And  please, take a sec to go to BeTheMatch.org  and order up a home-swab kit and get on the registry. So many people just like you and me – different only because they’re sick— are being told “Chemo can’t help you anymore. You need a bone marrow transplant.”  And they’re learning their loved ones don’t match. And they’re thinking …God only knows what they’re thinking.  

Because the truth is, this dude isn’t Superman. He’s just a guy, someone’s loved one – dad, husband, grandpa, brother, best friend. And there’s thousands of people out there like him– needing a transplant and just trying to get to Day Zero.  You can get on that registry and maybe be the match for someone.  Maybe YOU can get him or her, that mom or brother or daughter or husband or grammy - to Day Zero.  Think about it.

“We’re not too big
And we’re not too tough
But when we work together
We’ve got the right stuff” 

-The Wonder Pets

One thing that made me nervous was they weren’t okay with my donating ahead of time and freezing the cells – which is a common enough thing, I guess – because they can’t say 100% they’re going to use them.  I can’t believe how close this guy got - less than a week - and now to have another setback?  This has to happen for him after all this time. More than a year.  Keep a good thought this is just a minor delay.

So I get up yesterday morning and I have an email  from Stacey that it isn’t just a test the lab can do. She has to send me test tubes and they have to be shipped to her to be shipped to the donor center. All right, slight complication. I have to wait for the test tubes she overnighted, go to a different lab because the first one won’t let me leave with samples (it’s my own blood!)  and find a FedEx box. And this while I’m on the clock at work because, as it turns out, the tubes didnt get to me til 2pm, long after when I can log out for lunch.

The takeaway for the day is to laugh and appreciate bizarre moments in life that will never come again. Case in point:  at about 3pm on a sunny, windy, cold Tuesday, I’m trotting down the sidewalk at Patriot Place, head towards the B&W clinic there, carrying  a box of test tubes and a FedEx envelope .  And all of a sudden the speakers along the sidewalk start blasting this song:

LOL.  LOL.  And then I drove around looking for a FedEx box no longer worried if I was missing another ten minutes of work. I realized that this is the most important thing I’m going to be doing for the next week, this donation, and whatever else has to be slighted, it’ll be all right.  People will understand.  I also realized, along with knowing I have this responsibility, I have to realize the other people involved all know what they’re doing and it’ll all work out. I don’t need to worry about anything, I just need to do as directed. And in place of worrying, I can insert appreciating the moment.

I found a FedEx box , no problem, and mailed my blood to Boston, which sounds like I run some mailorder boutique on the show True Blood.

(I don’t watch that show, but I wanted to prove I can add Zejko Ivanek into anything. Click on the image, it moves lol.)

Anyhow, the pre-amble is over and now here’s what’s on tap:

FRIDAY: I go to Dana Farber and they give me a shot of this stuff that makes my marrow churn out stem cells double-time, priming me for collection. I will stay there an hour to make sure I have no reaction to the stuff. 

SATURDAY-MONDAY: A visiting nurse comes to my house and gives me more of this accelerant, let’s call it, so when I go through the juicer I will be chock full of PBSC.  (I threw in the word juicer for my mom.  PBSC dontation doesn’t involve any juicers lol.)

TUESDAY: Go time. I go into DF to TCB. I will be live blogging, don’t you worry lol.  Basically, I will be sitting there for the better part of the day while the blood goes out, the stem cells are collected by a machine, and the blood comes back in. Blood out, Blood In. It’s like the reverse of that movie…

If you’re interested in what The Guy aka Superman aka Houdini 2012 (I’ve decided he should have a variety of names, like a rapper) is going through -  you can read about it  here.   It’s rough. They extra-chemo him and knock out sick cells and the healthy ones in the marrow to make way for…well, for my cells. Wow. That’s crazy.  But it is a rough process. He is probably going through it now or will be shortly. Then he gets my cells in what they call Day Zero.

And then the long road of recovery begins. You can read about all that here.  Basically, my cells will come in, settle right into the marrow and take over creating this dude’s red blood cells. I hope they’re up for the task.

-Beth

By that I mean, even when I switch topic month-to-month I will keep a focus on children in some way. This could be local kids, kids internationally, how media or war or education affects kids, kids’ health, kids’ movies, kids who drive me crazy. (lol). This year, I’m going to focus my “looking into things” on issues related to children. Because too many kids don’t have what every kid deserves.

To that end, I wanted to start with my own personal laundry list of what every kid deserves.

Every kid deserves decent food, potable water, suitable clothing and shelter, education, access to health care, a safe, healthy community, and,  so importantly,  a secure home where he or she is surrounded by loving and competent adults, plus also, a chance to practice or experience his or her culture or religion and a chance to BE A KID – fun, recreation, peace of mind, time to imagine, and not a fulltime job in a dump or a mine.

With this list in mind, I’m setting out on a year long kid-centric expedition. I welcome any comments, suggestions, guest blogs, from any of you who have kids or work with kids or just love kids.

I had such a wonderful holiday watching my nieces and nephews be surrounded by love, security, warmth, nurture and fun. Everything they needed and most stuff they wanted. EVERY KID deserves that.

Let’s see what the year brings.

Beth

PS – Don’t worry I will also still be updated in my pbsc donation and other random stuff I know you love to read about LOL.

Get 'er done...

Well,  at this last check-in, supernice nurse practioner Sue decided to recheck the suitability of my arm veins for donation. As you might recall, originally my veins were deemed too weak for the peripheral blood stem cell donation ( physically, a process like donating blood where they stick the thing in your arm…) . SO they were going to put an IV-like line in my neck to take care of business.  But then in September they went back to the arm.

Well, now after a re-check, we’re back to the central line . ”Three out of three nurses agree Beth’s veins suck.” (lol).  

I was sort of thrown because the neck thing adds a layer of complication (look at this guy chillaxing as he does it through the arm.).   BUT, I trust NP Sue and the others and I just want it done the right way.

So, anyhow,  ”tow the line” was in my head for this follow-up. To me, I thought it meant someone doing her part in a process, pulling her weight. Nice little pun. But it turns out, that isn’t  really what it means. And, in fact, that isn’t even how it’s spelled. (lol)

I was reading this good book  on writing by a guy named Peter Roy Clark the day after I went to DF.  He advised people to know their cliches before using them. He pointed out – total coincidence- the expression is “toe the line”. 

 In normal use, as many of you may know,  it means follow the rules or expectations of a party or group (so I kind of knew the meaning.)  And the origin of the expression- according to Clark at least-  is from the old rule of a boxer having to step up to a  line in the dirt, literally put a toe to it, to give official notice he was set to fight or ready to keep fighting after he got hit.

Wow. I was stopped short.  I can’t think of a better metaphor for what this guy  has been doing over and over again–  stepping up to the line, even after he gets hit , and saying he is ready to fight. 

I was looking at videos about people getting marrow/stem cell donations the other day. They are so sick when they get to that point. That’s where this guy is at. So sick at one point they didnt even think they could save him.  My new caseworker, super nice Peg,   told me she had never heard of a patient getting cancelled off the list like this guy did and then coming back.

But this freaking guy. He just keeps coming back. It makes me shake my head  in amazement. I can’t get over his tenacity and strength. Who IS this guy?!! (One theory.)  

I happened to look at an old journal and I saw that I got my first phone call about this transplant last JANUARY. This guy has been going through this for a year.

But here he is,  toeing that line, ready to fight.  What an amazing gift to be able to be in his corner.

My first shot of stuff to make my stems cells grow super fast is Jan. 13th.  I’ll keep you updated. Thanks so much for reading and for being in this guy’s corner, too, and mine.   Oh, and don’t forget to get on the marrow registry (www.bethematch.org) . 

“If you even dream of defeating me, you better wake up and apologize.”  - Muhammed  Ali

Well, I got an email today: time to get out of  the pool.

A new social worker, Peg, let me know The Guy is in remission and ready for the transplant ASAP!! And they mean it:  I’m scheduled to go in to Dana Farber on January 17th and donate!  So, how do you like them apples?

I am so happy for this guy and his family. This is the last thing I thought would happen. A while ago I even made myself throw out my red donor card to accept the fact the process was over and done.  But, lol, this freaking guy!  I can’t believe the strength he has!  He Just. Keeps. Coming.  Back. 

Unbelievable.

So, so much for over and done. (I hesitate to ever post a link to a Justin Bieber song,  but…) . In keeping with my original plan, – wow, nine months ago! – I’m going to keep checking in with the different stages of the donation process to try to show it’s doable and not scary. I’m going into Boston tomorrow to refresh their information on my health with a few tests and another quick exam with Sue the nurse practitioner. I’ll let you know more specifics after this.

By the way, as you read this, take a moment to get on the bone marrow registry.  You can do this and save someone’s life and give them precious time with their loved ones. YOU can. And you can get on the registry without even leaving your home!

So, that’s the twist of the day. Thanks for reading.

And now, I’m paging Dr. Morris and Dr. Dubenko, the game’s back on.

(I will keep posting this picture to amuse my sister. lol).

Back a long time ago, I’m not sure when, I asked my late paternal grandmother, Mal, what her ethnicity was. I don’t know why I asked her this since  I knew the answer and had talked to her at length many times about her branch(es) of the family tree . But I remember her that day answering briskly and bluntly: “half Irish, half Jew.”  This still makes me smirk.

The Marks or Marx side was the Jewish half of Mal, her father’s side. And up until this year, they were actually the branch of the tree whose history I knew in the most detail, thanks to my grandmother.

These are the things I knew from her:  her grandfather was named Leopold. He sold pretzels on a stick (and I add “And boy did it hurt!” Rim shot…) .  Later he sold bibles and rosary beads. His wife’s name was Lena. Their big family, which included my great-grandfather William, lived  on the Lower East Side of Manhattan, including for while on Delancey Street. 

In a tragic accident, Lena died in a tenament fire (in 1904.) A  worker threw a match into a can of paint, causing instant flames. In the chaotic seconds following, Lena was burned badly, as was the baby in her arms. He lived. She didn’t.

Lower East Side

Both Lena and Leopold were from Prussia, my grandmother always specified, Germany before it was Germany.(Though they weren’t married there and I don’t know when or where they met later in New York…)  Lena’s maiden name was Kahn. Her mother’s maiden name, Weiss. Leopold changed the name  Marx to Marks  to Americanize and so they wouldnt seem connected to “the communist”. The fact they were Jewish mades the rosary beads and bible selling part pretty funny to my grandmother. My great-grandfather converted when he married a an Irish Catholic. (I think.) 

The rest is history. Well, I mean, it’s all history. It’s the history of how I got to be who I am, in part. 

Part of my story is that of a Jewish man and a Jewish woman who each left Europe and settled in New York.  And the story of Jewish people in New York City around the turn of the century includes a part of my family story. The Hebrew Orphan Asylum  where several of my great-aunts and uncles grew up when their mom died, the section of New York once called “Little Germany,” street corner peddler spots,  tenaments. These are all places connected to me.  As is a man who changed his last named to leave the past behind, and a couple who named one of their American-born sons George Washington Marks. A quintessential American immigrant story, and one specifically European Jewish, too.

And so Judaism is also part of my story. One-eighth of my ethnic or cultural background is Jewish.  I joke about this around Chanukkah saying it means somene owes me one gift. I think that’s what I’m thinking about it now and about Leopold and Lena.

I wonder if Leopold and Lena were observant Jews. I wonder if it was a big part of their identity. I wonder if either of them felt persecuted in Prussia, and that’s why they left. I wonder how much they kept inside the Jewish community when they came to the U.S – who knows, what with Leopold selling bibles and rosaries, he obviously knew some Catholics. (My grandmother was right, that is pretty funny…) .

And I wonder if they would feel let down  that they came here and their faith got coverted away, at least by one of their kids.( I don’t know  if any of my great aunts and uncles kept the  faith. ) Or maybe they wouldn’t really care. They seemed to embrace the new pretty enthusiastically in America. But who knows. Crossing religious lines like that was a big deal. To some, it still is.

What parts of being Jewish did Lena and Leopold pass down through the generations? What I have absorbed without knowing it? And what was lost over the more-than century that’s passed since they came here to stay? I don’t know.

But  I think what I’ll do is start a new tradition. I’m going to light one candle sometime during Chanukkah. Maybe with my neices and oldest nephew.  (This just reminded me of Lexi singing a Hebrew song she learned in school.)  And we’ll remember that part of our family past is connected to the Jewish faith.  I will think of  the Chanukkah story of endurance, courage, miraculous survival, and faith. And I’ll  remember the Marx Family on the Lower East Side whose immigrant lives lives exemplified these same things.

Happy Chanukkah.