Poor Luiz - he attends classes in Rio four days a week. He has to wake up at 5:20 a.m. to get to class on time. I do my part to keep the house/clothes clean and have dinner ready when the time is right. The bulk of my work is generally after 5:00 p.m.
He is enjoying his academic adventure - new friends, new information.
Fridays are fun. No rules. This friday I took a nap and left a message on my white board (which I have for English classes). When Luiz got home he knew the plan -- and joined me in nap taking.
It’s not exactly pineapple season, but the strawberries are coming in by the truckload. So I sought inspiration.
Virginia suggested strawberry-pineapple jam. I know she has a slow cooker, so I was a bit worried about whether I could cook down the fruit without one, without burning them. But I do have a fine pan for such things. I bet I could do it.
More importantly, how do you say “pectin” in Portuguese?
Then Luiz asserted we should just have a sweet strawberry-pineapple tart instead. (He loves my pie crust, so this is a predictable request.)
Personally, I don’t think I have ever tasted the strawberry-pineapple combination. I was worried about the acid content. But Virginia assured me the acidity cooks out…
So I went for the tart.
Basically you make a sweet crust, slice up the fruit and mix it with a bit of sugar (I used Splenda, Luiz is diabetic), cook the fruit down a bit to get it all soft and to infuse the sugar/sweetener, then make up a package of vanilla pudding. Mix the fruit and pudding, pour it into your crust, then refrigerate until set.
Then slice it up and eat it with late night television.
Sorry I don't have a pic of the final product. It was more tasty than beautiful... but it was certainly fabulous.
Today is Father’s Day in Brazil. Today was a day to honor Senior Tonico. We lost him to a heart attack one and a half years ago – on a sidewalk we pass almost daily.
Zozó offered a luncheon at a nearby luncheonette.
It’s not easy to “celebrate” the loss of important family members. But it is good to be together.
You could definitely feel the reverence for fathers in the air.In Brazil it is not hard to celebrate family members.
There is good news great news on the treatment front for Chronic Lymphocytic Leukemia (CLL). We care about this because Luiz is a CLL patient.
It has been all over the news, but I have been waiting for our trusted ally Chaya Venkat over at CLL Topics Updates (a top-notch CLL patient information and advocacy blog) to weigh in on the real story. She is brilliant on the subject and loved by many for her tireless advocacy and work translating medical research papers into plain English for the rest of us.
[Go to her blog and GIVE HER A DONATION! Medical conferences are expensive, and happen all over the world. She is a saint. Really.]
I will not pretend to be a medical researcher, but suffice it to say that some folks have figured out how to modify a CLL patient's own T-cells (the little guys who patrol your body and kill the bad cells) then reintroduce them into the patient whereupon they specifically attack and kill the cancer cells.
Preliminary results have been outstanding. So far patients have been in complete remission for 10 months (since shortly after the clinical trial was begun). This is good news for our Luizinho.
Is this a cure? – no (not proven as such just yet). Is this available now? No, only in clinical trials. Is this a great breakthrough? Very smart people say YES. Are there risks? Yes.
There is a word in Portuguese that is often mentioned as one without a real equivalent in English: “saudade.” It essentially means longing, or homesickness, or emotional wishing-for, missing.
Sorry to say, I rarely, rarely have saudade for the United States. Sure, I miss my friends, but the country itself? – not so much. Even when Brazil drives me crazy with its high prices, under-educated populace and corrupt elected officials, I still do not pine for the days of living in the United States.
But at times my heart aches for the folks living in places I used to haunt. In this case I am referring to Detroit. I was born in Detroit. I went to school in Detroit (well, a block or two from the border of the City). My first real girlfriend (yes, I had a girlfriend) lived in Detroit. I loved Detroit.
But nowadays I’m sad for Detroit. It has fallen so far. I have saudade for how things used to be.
When my extended family lived in or near Detroit it was the heyday of the auto industry. The Big Three, we would say (GM, Chrysler, Ford). Almost everybody’s parent worked for the auto industry, or some other job supporting the industry. My grandmother used to joke that if she had a dollar for every slice of pie she served to auto workers in the diner she spent her working life in, she would be a millionaire.
But now things are different. Most of that is gone.
My brother and his wife moved to a cute little historic block in Detroit some time ago, bought an old Victorian house and refurbished it (Dan did a fantastic job!). They were one of the star homes on the neighborhood Christmas walking tour. But they saw the writing on the wall, sold the house, and moved to the country.
Now Detroit lays feral – or mostly so. Good luck my friends in Detroit. I know you are all rooting for success.
For a real taste of Detroit today – go take a look at the Sweet Juniper blog.
More times than I can count, Luiz, after revealing that he is living with Chronic Lymphocytic Leukemia, is hit with the blithe question: “Why don’t you just get a bone marrow transplant? That would be a cure, right?” Trust me, if that were the case we would have been there, done that by now.
Don’t get me wrong. We love that people are concerned and click into problem-solving mode when they learn of Luiz’s situation. But as most of you know, it’s better to hold your tongue until you know a little bit more about what you are talking about.
Let me take this opportunity to share some information that generally helps people understand why the “watch and wait” approach employed by cancer specialists in this field is the standard course of action for someone like Luiz. And then I’ll challenge readers to step up and be a part of the solution to Luiz’s long term worries. (I’m not asking for money.)
Chronic Lymphocytic Leukemia (CLL) is “chronic” because it progresses slowly in most cases, and people generally live with the disease for many years. (There are unfortunate exceptions, but Luiz definitely fits into the chronic category.) It’s true that it has been detected that Luiz’s bone marrow is producing white blood cells that are non-functioning and failing to die already and make way for more functioning cells. Over time this will lead to too many dud white blood cells taking up all the space and too few functioning white blood cells to adequately protect him from opportunistic infections. Thus is the simplified understanding of CLL.
Since it is our bone marrow that produces healthy white blood cells, we can see that Luiz’s bone marrow is asleep on the job.Replacing his degenerate marrow with more enthusiastic marrow with a good work ethic would certainly be an improvement – if it were only that easy.
A bone marrow transplant is a life threatening procedure. In order to introduce a whole new colony of bone marrow ready to get to work, you would first have to destroy Luiz’s immune system so it doesn’t go after the new marrow as enemy tissue.That means ridiculously high (life-threatening) doses of chemotherapy and radiation to strip him of his natural ability to fend off infection. Then you have to hope that the new marrow doesn’t go crazy thinking that it is now in an alien and enemy organism that it must destroy – going after Luiz’s cells (graft versus host disease).
So things can go wrong going in and things can go wrong coming out of the procedure. That’s a lot of risk for a patient that continues to live a-symptomatically for the time being. Better to watch and wait.
If and when Luiz’s disease (or the symptoms thereof) become more life threatening than the risk of the “solution,” then, and only then, will we move for transplantation. It is generally considered a final stage Hail Mary pass. But hey – when it works, it works great for the patient!
Oh – I forgot to mention the difficulty finding a suitable bone marrow donor. None of the possible good health outcomes are even in the picture if we cannot find a suitable donor.The best-chance possible donors are brothers or sisters. Luiz is an only child.
According to the National Cancer Institute in Rio, the leading bone marrow transplantation facility in Brazil, the odds of finding a non-first-relative bone marrow donor match are about 1 in 100,000. That’s the bad news.
The good news is that Brazil maintains the third largest registry of volunteer bone marrow donors in the world, the US and Germany being first and second respectively. Better yet, most countries with a donor registry participate in a global registry that lists more than 18 million donors from 47 countries. That helps close the odds a bit.
So here’s where you can be a part of the solution for Luiz and others, when the time comes. Register as a bone marrow donor volunteer. In the USA you can do this from the comfort of your home (the "Be the Match" National Marrow Donor Program will send you a kit and all you need to do is take a cheek swab for testing). In Brazil blood centers in every state will draw just 5ml of blood for testing. (No appointment necessary at INCA in Rio.) In the US, donors must be between the ages of 18 - 60; in Brazil it is between 18 - 55.
Once you are registered, the chances of your being called upon to be a donor are less than 1 in 500. However, if you have the opportunity to donate, the procedure is nearly painless and totally risk free. Localized discomfort from the procedure will likely not last even a weeks’ time. Less than 2% of your bone marrow will be extracted and this will be naturally regenerated by your body in about a month.
So what do you say? Can you spare a little time to join the global bone marrow donor volunteer registry – and maybe save a life? The life you save may be one we all love and hold very dear.
Follow these links for additional information about being a donor volunteer in the USA, Brazil and beyond.
And I want to acknowledge this column by Chris McGowen on the Huffington Post that stirred me to post something similar (using some of his words) on my blog.
Thank you in advance for whatever you may be able to do in this effort. Feel free to re-post on your blog or to your Facebook page. We are working to surmount the odds.
More or less every two months Luiz treks over to the National Cancer Institute in Rio for his periodic checkup. Actually he does it twice, one day to have blood drawn (he has to get there early, they stop drawing blood at 8:00 a.m.) and then again a couple days later for the consultation.
His appointment is always 2:00 p.m., which is really more like they have a morning batch of patients and an afternoon batch of patients.The afternoon batch begins 2:00 p.m. So inevitably he sits and waits in the ever-so-depressing waiting room. That said, yesterday Luiz waited 4 ½ hours before he was called in. (I was not there because Luiz would not let me come along – I got into a near shouting match with the arrogant, smarter-than-thau, “shut up and just do what I say” young medical team leader last time over a simple question.)
Luiz’s current doctor indicated that (for some reason) Luiz’s spot is almost at the end of the day, so he will always be called near the end.Oh really – was someone going to tell us this?His appointment slip always says 2:00 p.m. – but if their secret scheduling thing in the back has Luiz never seen before 4:30, why not tell him that? Needless to say Luiz was exhausted by the time he got home.
On the bright side – all of Luiz’s Complete Blood Count numbers were wonderful.Things remain stable and some ticked in the better direction. Our “Watch and Wait / Worry” period continues.It has been nearly three years since Luiz’ Chronic Lymphocytic Leukemia diagnosis. He continues to maintain a healthy state of affairs.
This time around I’m going to add a health update for myself.
I’m about 15 days post gastric bypass surgery. I feel great, my doctor assures me all is going well, and I’m out walking twice a day. By Monday I’ll be up to 70 ml of puréed food every 45 minutes. Oh the possibilities! I’ve lost nearly 30 pounds.
Until liberal fascism came along and reared it's ugly head we all could get along, at least most people across America could. Were liberals taught to respect others? Have they become mature adults? I even see people who are liberals in my own family who hold onto childish grudges and haven't grown up into mature adults. I don't think having a child automatically makes you mature either. I don't even think being monetarily stable necessarily makes one a mature person. Maturity has to come from inside oneself. I used to be jealous of certain people in my family because materialistically speaking they were and are better off than I. But, I'm not any more. I actually feel sorry for them now. I have been through major life experiences that they have not. These circumstances have forced me to grow up. I have come a long way in the maturing process during both my teenage and adult years. I hold certain convictions because of both my faith and my political beliefs and I stand true to my convictions. I have not chosen to take the easy road in our society which says the only thing that matters is the person's feelings. We must all take responsibility for our own lives. Yes, I do think if one family member had to deal with certain things that another family didn't have to endure, and if a family member member(s) responded or just didn't respond then that could have played a role in how a person may have chosen this or that path. But, it is ultimately the individual's decision how they choose to live their life - responsibly or not. My parents have taught me a very important prayer which I try to remember as often as possible. I highly recommend it. Here it is:
Sorry, kinda went on a tangent.... Glenn Beck, his wife and daughter were harassed by some liberals who hold a childish, low-class mentality while they were attending an outside movie event in Bryant Park. During the summer New York City's Bryant Park hosts weekly showings of classic films where you can bring blankets lay out on the lawn, watch a classic movie, and enjoy yourself.
As Beck explained, he attended Monday night‘s public showing of Alfred Hitchcock’s “The 39 Steps” with his wife and daughter. During the film, he was ridiculed, had someone “kick a cup” of wine on his wife and on his blanket, and even witnessed another person stand up and yell, “We hate conservatives here!”
“These people were some of the most hateful people I have ever seen,” Beck said. “All I wanted to do is go out on a blanket with my family and have dinner in the afternoon sun and sit around Americans, not like-minded Americans, and just watch a movie in the park. And last night at about‑‑ when the movie was just about over, my wife and I got out because it was hostile.”
When Beck left near the end of the movie, the crowd applauded.
“I don’t know what kind of victory you thought you won,” Beck said on radio in response, and later added, “I swear to you I think if I would have suggested, and I almost did, wow, does anybody have a rope, because there’s a tree here, you could just lynch me. And I think there would have been a couple in the crowd that would have.”
Despite the obvious hurtful elements of the story, Beck used it as an opportunity to deliver a message to conservatives:
All through the evening, I wanted to say to you today, please, please, please don’t ever treat anybody like that. If Van Jones comes and sits next to you, please don’t treat anybody like that, and then I realized I don’t have to say that to you. I was there at 8/28. I saw when people were pointing their finger in your face and calling you a racist, setting you up, egging you on, I saw how you reacted. I don’t have to tell you that.
Later in the evening, he admitted he had to call his daughter and console her because she was so distraught.
Here is Beck telling the story of the actual events:
Why was it impossible for those liberals to simply watch the movie and let everyone enjoy watching the movie? Well... Okay. Liberals like to ruin enjoyment, freedom, and liberty for everyone else as long as it doesn't affect them. And, sometimes they do even it does affect them because they simply like to run, control, and ruin everyones' lives. What childish beasts! Apparently some liberal attendee at the movie event has taken offense at what Beck said on the radio and has claimed that his version of the fiasco in Bryant Park is false. A lib taking offense and claiming something is false when.... Who woulda thunk? When in fact her tweets show a very different story.
First, here are her claims as written to New York Magazine:
To Whom It May Concern:
Just a quick FYI -saw your article on Mr. Beck and his numerous FALSE claims about the way that he was treated at Bryant Park last night. Myself and several of my friends were seated immediately behind Mr. Beck & co (have pictures) and I can tell you that while the crowd was certainly not *thrilled* that he had shown up, his family was left completely alone, and for the most part he was too. Conversely, it was his security detail (two body guards) that seemed to be unnecessarily prickly with the crowd, scolding myself and my friends for acrobatics and other harmless activities taking place well before the movie started, and contributing to a considerably less relaxed atmosphere than is typically experienced during BPMN (I’ve been going for about six years now).
It was my friend that spilled the glass of wine on Tanya -and I can assure you that it was a complete accident. A happy one, to be sure, but nonetheless a complete and utter accident. As soon as the wine spilled (and I question how Tanya became soaked from a half glass of wine) apologies were made and my friends pretty much scrambled to give Tanya & co napkins -no doubt aware that it would look terrible and that their actions could be perceived as purposeful. No words were exchanged after that, as I think that it became pretty clear to Beck & co that my friends and I were doing everything in our capacity to help clean the “mess”.
I‘m sure it’s unnecessary to point out the hypocrisy in Glen’s statements that we were being hateful. I can assure him that we don’t need his sympathy. Incidentally, none of us have made a career of “spewing hate” on the radio, or any other media platform. We live our lives intolerant only of those who don’t tolerate: We have chosen New York as our city for that very reason. We do things like go to Bryant Park Movie Night, and vote to legalize gay marriage. We don’t taunt Glen, or his family. And we certainly don’t waste our wine, even on Tanya.
Thanks, and please let me know if you have further questions.
Lindsey Piscitell
Glenn will be issuing an apology... Or not? They did a little research into the person who is Lindsay Piscitell.
She also has a Twitter account…though that account is “protected” for confirmed followers only.
However, when GlennBeck.com’s Wilson Garrett simply Googled her name he did notice this:
This is the same woman who claimed to be "less than thrilled" that Beck and his family were sitting right in front of her. Less than thrilled is an understatement to say the least.
The link in that Tweet to FourSquare had the pictures of Glenn and his family on their blanket. It was active until a few hours ago. But….it’s now not there:
Why did she delete the photo? What does she have to hide? If and it is a big if indeed, her pic could have proven her account of the events why would she have deleted the photo?
We also noticed that one of her Twitter followers was eager to respond to her notification about proximity to Glenn with some timely suggestions:
How about that?! Lindsey’s pal suggests an accidental spill!The Truth becomes self-evident now.
I did want to see if Marissa had other suggestions, but guess what:
Yeah, her Twitter account is now gone.
Lindsey, we note, tells the world on Tumblr that she is:
What can we conclude? Is it possible that the wine spill really was accidental? Oh, maybe. But Twitter tells us a few things that may call her account and her motives into question.
We certainly would like to know more — but they keep deleting things!
Stay tuned for updates.
Update:
It seems that Lyndsey Piscitell was also busy posting comments on some blog posts about the Beck encounter. At least we know that it is someone using the same name as she uses on Twitter (dANGLINGbABY), and claiming to be in the group involved in the encounter.
Of course the “truly accidentally” part might be suspect now that we know about the friends Twitter suggestion.
AND was it a bottle? I thought she said it a glass?
Glenn also pointed out on the radio this morning that the suggestion about “accidentally” kicking him the mouth might have played a role in the “acrobatics” going on near them.
Lyndsey’s e-mail to New York Magazine depicts innocuous interaction…”his family was left completely alone, and for the most part he was too”…while pointing any blame on Beck’s security detail. I‘ve watched Glenn’s security team in dozens of tricky situations and they are a polite and professional group. Certainly Lyndsey wouldn’t have done anything deliberate to draw their attention, right?
Seems a little less innocuous now, doesn’t it?
Another commenter on one blog post asks this question of the group:
Turns out dANGLINGbABY had a ready answer:
Why has Glenn not been “chased” away? “We tried as best we could tonight.” And then she references the picture taking, and the concept that “outside world” is trying to send a message to Glenn. We think we get the message about what happened that night.
UPDATE:
A Sara Romanoski recently blocked her Twitter account (saromo) but a Blaze reader managed to take some screen grabs before that happened.
Early in the evening she did solicit ideas for to what to do in the situation:
She too makes reference to “accidentally” spilling wine on:
She did get her wish on the TV mention.
And she did at the time seem to want to ride the wave of attention:
Jon Stewart? Hellooooo?
The Daily Caller’s Jim Treacher quotes “saromo” saying this:
Well, I think we can conclude from the actual events as recounted from Glenn, and evidence above, that liberals are fascist pigs with absolutely no manners, no civility, totally selfish, childish, and are highly disturbed and angry liars.
However, when GlennBeck.com’s Wilson Garrett simply Googled her name he did notice this:
