Tuesday, November 25, 2008

Thanksgiving

Thanksgiving week is here again. Here is my list of things that I am thankful for this year...

I am thankful for my parents for loving me through all of my mood swings.
I am thankful for my brothers for being so fun, and helpful, and understanding.
I am thankful for the coolest cousins ever.
I am thankful for friends who love me for me, even when I'm being less than lovable... or vain and superficial.
I am thankful for Joe, for teaching me the importance of loving more, caring more, and enjoying life more.
I am thankful for my fellow widdas & widders for making me feel sane in times of insanity.
I am thankful that I have the kind of Pastor who will drive to my place just to get rid of a dead bird, because I'm a wimp.
I am thankful that my Pastor is married to the kind of lady who will hunt me down when I run away so that I have a shoulder to cry on... and will celebrate with me when I have happy red shoe days.

Which brings me to the other things I'm thankful for...
... red shoes, of course. And striped socks.
.... my beloved Steelers (Stillers!) - even when they make game watching stressful.
.... this magical creation known as pizza.
.... my Tuesday evening phone calls.
.... couch conversations.
.... soul dancing in the kitchen, hula dancing in the family room, and silly dancing on the train.
.... sushi buffets.
.... stars.
... tea and cookies... or tea and cake... or tea and silliness... or just the friends that share all of that with me.
... being able to share secrets and stories.
... little kid smiles and hugs.
... the kind of snow that looks like glitter falling from the sky.
... coffee ice cream. Or any ice cream with peanut butter!
... Christmas lights.
... secret Chik-fil-A runs.
... the opportunity to sit and breathe after certain little brothers create situations in which you have to unexpectedly run so fast your legs feel like jelly.
... the super cool magnets on my fridge.
... my swings, in my park. :)
... jellybeans.
... blue nailpolish.
... hugs.

I am blessed.

I think a great part of being blessed and feeling blessed is an attitude. Some people seemingly have the world in the palm of their hands, and yet they are miserable. Others seem to have nothing and yet are filled with joy.

I always try to remind myself how blessed I am at the end of each day. This past year when I was experiencing the toughest months of my life I realized just how blessed I am. More times than I could count, people would say, "I envy you." or "You're so lucky." Every time I heard that, I'd be surprised. What made me enviable or lucky was different to each person. All I could think was, "what kind of emptiness do they feel in their life that they could be envious of me?"

But I am blessed. I know it. Sometimes, it feels unfair how blessed I am. I truly hope that anyone who still reads my ramblings feels truly blessed as well. Happy Thanksgiving.
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Friday, November 21, 2008

Labels

Since Joe died, I've connected with many widows and widowers virtually and in real life. It's been enlightening to hear each person's story. Our stories are all at once very different and very similar. Through these connections, I've continued to learn so much about myself... about life... about mourning and grieving.

Many times, someone will share something and I can't stop thinking, "Wow. Yes."

Recently, a widower shared something that I found to be so true and valid. He speaks of one specific example, but what he says can be applied to other areas of life as well. So I'm sharing an excerpt... [DW = Dear Wife]

We are the authors of our every next moment.
Are you “writing” yourself a happy today and tomorrow?
Are your labels/thoughts in line with the future that you long for?

I was thinking about the choice we each have in accepting a label that society has placed on us….and the choice we each have in the labels that we “give” to ourselves. I think it is crucial that we take a good look at these labels because I believe they are extremely instrumental in defining our future. For example, in regards to dating, I once had the thought “boy, it’s gonna be hard for me to find someone that can accept the love that I will always have for my DW”. Internally, I more or less gave myself the label of “Damaged Goods”. If I ask myself the question I posed above…”Would I like to have that label (Damaged Goods)?”. The answer would be a big “Heck no”. Does this label allow me to grow? No. Does this label lead to what I want for my future? No, no, and no. That powerful label was debilitating because it limited what I believed I was worth….limited what I believed I had to offer another. Once I realized the disservice I was doing myself, I immediately pitched the lousy label. I chose a more hopeful label/perspective, and instead of focusing on the challenges that the love I have for my DW would pose on a future relationship, I instead chose to focus on the fact that I now have more love to offer another! What a difference this made for me. It allowed me to view my love for my DW as an actual asset…I have more love to give others!…more love to give the world!
Now while I’m not naïve in thinking that my past will never present challenges in future relationships…I think the important point is, that I/we need to focus on our “special gifts” not on our “special needs”. [Thank you, AR]

I think some variation of what was written has been a conversation I've had in my head each day for months and months. Here's to writing a happy today and tomorrow. :)

Thursday, November 13, 2008

A Doctor, a Mutation and a Potential Cure for AIDS

The startling case of an AIDS patient who underwent a bone marrow transplant to treat leukemia is stirring new hope that gene-therapy strategies on the far edges of AIDS research might someday cure the disease.

The patient, a 42-year-old American living in Berlin, is still recovering from his leukemia therapy, but he appears to have won his battle with AIDS. Doctors have not been able to detect the virus in his blood for more than 600 days, despite his having ceased all conventional AIDS medication. Normally when a patient stops taking AIDS drugs, the virus stampedes through the body within weeks, or days.
[Dr. Gero Hutter] Sixten Koerper

Dr. Gero Hütter isn't an AIDS specialist, but he 'functionally cured' a patient, who shows no sign of the disease.

"I was very surprised," said the doctor, Gero Hütter.

The breakthrough appears to be that Dr. Hütter, a soft-spoken hematologist who isn't an AIDS specialist, deliberately replaced the patient's bone marrow cells with those from a donor who has a naturally occurring genetic mutation that renders his cells immune to almost all strains of HIV, the virus that causes AIDS.

The development suggests a potential new therapeutic avenue and comes as the search for a cure has adopted new urgency. Many fear that current AIDS drugs aren't sustainable. Known as antiretrovirals, the medications prevent the virus from replicating but must be taken every day for life and are expensive for poor countries where the disease runs rampant. Last year, AIDS killed two million people; 2.7 million more contracted the virus, so treatment costs will keep ballooning.

While cautioning that the Berlin case could be a fluke, David Baltimore, who won a Nobel prize for his research on tumor viruses, deemed it "a very good sign" and a virtual "proof of principle" for gene-therapy approaches. Dr. Baltimore and his colleague, University of California at Los Angeles researcher Irvin Chen, have developed a gene therapy strategy against HIV that works in a similar way to the Berlin case. Drs. Baltimore and Chen have formed a private company to develop the therapy.

Back in 1996, when "cocktails" of antiretroviral drugs were proved effective, some researchers proposed that all cells harboring HIV might eventually die off, leading to eradication of HIV from the body -- in short, a cure. Those hopes foundered on the discovery that HIV, which integrates itself into a patient's own DNA, hides in so-called "sanctuary cells," where it lies dormant yet remains capable of reigniting an infection.

But that same year, researchers discovered that some gay men astonishingly remained uninfected despite engaging in very risky sex with as many as hundreds of partners. These men had inherited a mutation from both their parents that made them virtually immune to HIV.

The mutation prevents a molecule called CCR5 from appearing on the surface of cells. CCR5 acts as a kind of door for the virus. Since most HIV strains must bind to CCR5 to enter cells, the mutation bars the virus from entering. A new AIDS drug, Selzentry, made by Pfizer Inc., doesn't attack HIV itself but works by blocking CCR5.

About 1% of Europeans, and even more in northern Europe, inherit the CCR5 mutation from both parents. People of African, Asian and South American descent almost never carry it.

Dr. Hütter, 39, remembered this research when his American leukemia patient failed first-line chemotherapy in 2006. He was treating the patient at Berlin's Charité Medical University, the same institution where German physician Robert Koch performed some of his groundbreaking research on infectious diseases in the 19th century. Dr. Hütter scoured research on CCR5 and consulted with his superiors.

Finally, he recommended standard second-line treatment: a bone marrow transplant -- but from a donor who had inherited the CCR5 mutation from both parents. Bone marrow is where immune-system cells are generated, so transplanting mutant bone-marrow cells would render the patient immune to HIV into perpetuity, at least in theory.

There were a total of 80 compatible blood donors living in Germany. Luckily, on the 61st sample he tested, Dr. Hütter's colleague Daniel Nowak found one with the mutation from both parents.

To prepare for the transplant, Dr. Hütter first administered a standard regimen of powerful drugs and radiation to kill the patient's own bone marrow cells and many immune-system cells. This procedure, lethal to many cells that harbor HIV, may have helped the treatment succeed.

The transplant specialists ordered the patient to stop taking his AIDS drugs when they transfused the donor cells, because they feared the powerful drugs might undermine the cells' ability to survive in their new host. They planned to resume the drugs once HIV re-emerged in the blood.

But it never did. Nearly two years later, standard tests haven't detected virus in his blood, or in the brain and rectal tissues where it often hides.

The case was presented to scientists earlier this year at the Conference on Retroviruses and Opportunistic Infections. In September, the nonprofit Foundation for AIDS Research, or amFAR, convened a small scientific meeting on the case. Most researchers there believed some HIV still lurks in the patient but that it can't ignite a raging infection, most likely because its target cells are invulnerable mutants. The scientists agreed that the patient is "functionally cured."

Caveats are legion. If enough time passes, the extraordinarily protean HIV might evolve to overcome the mutant cells' invulnerability. Blocking CCR5 might have side effects: A study suggests that people with the mutation are more likely to die from West Nile virus. Most worrisome: The transplant treatment itself, given only to late-stage cancer patients, kills up to 30% of patients. While scientists are drawing up research protocols to try this approach on other leukemia and lymphoma patients, they know it will never be widely used to treat AIDS because of the mortality risk.

There is a potentially safer alternative: Re-engineering a patient's own cells through gene therapy. Due to some disastrous failures, gene therapy now "has a bad name," says Dr. Baltimore. In 1999, an 18-year-old patient died in a gene therapy trial. Even one of gene therapy's greatest successes -- curing children of the inherited "bubble boy" disease -- came at the high price of causing some patients to develop leukemia.
[Chart]

Gene therapy also faces daunting technical challenges. For example, the therapeutic genes are carried to cells by re-engineered viruses, and they must be made perfectly safe. Also, most gene therapy currently works by removing cells, genetically modifying them out of the body, then transfusing them back in -- a complicated procedure that would prove too expensive for the developing world. Dr. Baltimore and others are working on therapeutic viruses they could inject into a patient as easily as a flu vaccine. But, he says, "we're a long way from that."

Expecting that gene therapy will eventually play a major role in medicine, several research groups are testing different approaches for AIDS. At City of Hope cancer center in Duarte, Calif., John Rossi and colleagues actually use HIV itself, genetically engineered to be harmless, to deliver to patients' white blood cells three genes: one that inactivates CCR5 and two others that disable HIV. He has already completed the procedure on four patients and may perform it on another.

One big hurdle: doctors can't yet genetically modify all target cells. In theory, HIV would kill off the susceptible ones and, a victim of its own grim success, be left only with the genetically engineered cells that it can't infect. But so far that's just theory. All Dr. Rossi's patients remain on standard AIDS drugs, so it isn't yet known what would happen if they stopped taking them.

In 1989, Dr. Rossi had a case eerily similar to the one in Berlin. A 41-year-old patient with AIDS and lymphoma underwent radiation and drug therapy to ablate his bone marrow and received new cells from a donor. It is not known if those cells had the protective CCR5 mutation, because its relation to HIV hadn't been discovered yet. But after the transplant, HIV disappeared from the patient's blood. The patient died of his cancer 47 days after the procedure. Autopsy tests from eight organs and the tumor revealed no HIV.

Write to Mark Schoofs at mark.schoofs@wsj.com
Corrections & Amplifications

The Foundation for AIDS Research, which uses the acronym amFAR, is the name of the nonprofit group cited in this article. The name of the group was incorrectly given as the American Foundation for AIDS Research.

Wednesday, November 05, 2008

Looking for a book to read???

Today, I'm sharing Joe's Book List. He wanted to keep track of the books he read following his diagnosis. The list isn't complete... as Joe read a few more books that he didn't get a chance to add to the list. But, I've chosen to present the list as is.

The books that are highlighted are ones that Joe particularly enjoyed.

It's a pretty eclectic list - there should be something for everyone on here.

Fiction

1. Angels and Demons (Dan Brown)
2. “B” is for Burglar (Sue Grafton)
3. Christ the Lord (Anne Rice)
4. The Solitaire Mystery (Jostein Gaarder)
5. Middlesex (Jeffrey Eugenides)
6. Waiting (Ha Jin)
7. The Curious Incident of the Dog in the Night (Mark Hadden)
8. The Lake House (James Patterson)
9. Hide and Seek (James Patterson)
10. 1st to Die (James Patterson)
11. The Surgeon (Tess Gerritsen)
12. Harvest (Tess Gerritsen)
13. Body Double (Tess Gerritsen)
14. Chill Factor (Sandra Brown)
15. The Secret Life of Bees (Sue Monk Kidd)
16. The Red Tent (Anna Diamant)
17. Bleachers (John Grisham)
18. Time Traveler’s Wife (Audrey Niffenegger)
19. Case Histories (Kate Atkinson)
20. The Kite Runner (Khalid Husseini)
21. Interpreter of Maladies (Jhumpa Lahiri)
22. Extremely Loud and Incredibly Close (Jonathan Saffran Foer)
23. The Bonesetter’s Daughter (Amy Tan)
24. My Friend Leonard (James Frey)
25. A Million Little Pieces (James Frey)
26. Their Eyes Were Watching God (Zora Neale Hurston)
27. The Five People You Meet in Heaven (Mitch Albom)
28. The Thanksgiving Visitor (Truman Capote)
29. The Mysteries of Pittsburgh (Michael Chabon)
30. Espresso Tales (Alexander McCAll Smith)
31. The Devil Wears Prada (Lauren Weisburger)
32. A Prayer for Owen Meany (John Irving)
33. The World According to Garp (John Irving)
34. Life of Pi (Yann Martel)
35. Slow Man (J.M. Coetzee)
36. No Country for Old Men (Cormac McCarthy)
37. Balzac and the Little Chinese Seamstress (Sie Dajie)
38. Maybe a Miracle (Bryan Strause)
39. Blindness (Jose Saramago)
40. House of Sand and Fog (Andre Dubus III)
41. The Memory Keeper’s Daughter (Kim Edwards)
42. Harry Potter and the Order of the Phoenix (J.K. Rowling)
43. Harry Potter and the Half-Blood Prince (J.K. Rowling)
44. A Lesson Before Dying (Earnest J. Gaines)
45. No-No Boy (John Okada)
46. A Thousand Splendid Suns (Khalid Husseini)
47. The Namesake (Jhumpa Lahiri)
48. The Best of O. Henry (O. Henry)




Nonfiction

1. The Great Influenza (John Barry)
2. Kitchen Confidential (Anthony Bourdain)
3. Al on America (Al Sharpton)
4. The God Factor (Cathleen Falsani)
5. The Case for Christ (Lee Stroebel)
6. It’s Not About the Bike (Lance Armstrong)
7. Flags of Our Fathers (James Bradley)
8. Marley and Me (John Grogan)
9. The Tipping Point (Malcolm Gladwell)
10. Stiff (Mary Roach)
11. My Struggle with Faith (Joseph Girzone)
12. Freakonomics (Steven Levitt and Stephen J. Dubner)
13. Fast Food Nation (Eric Schlosser)
14. Guns, Germs, and Steel (Jared Diamond)
15. Collapse (Jared Diamond)
16. The Pursuit of Happyness (Christopher Gardner)
17. Night (Elie Weisel)
18. Bringing Down the House (Ben Mezrich)
19. Tuesdays with Morrie (Mitch Albom)
20. Now I Can Die in Peace (Bill Simmons)
21. City of Fallen Angels (John Berendt)
22. Without Pity (Anne Rule)
23. Every Breath You Take (Anne Rule)
24. The World is Flat (Thomas L. Friedman)
25. Running with Scissors (Augusten Burroughs)
26. Magical Thinking (Augusten Burroughs)
27. Possible Side Effects (Augusten Burroughs)
28. A Child Called “It” (David Pelzer)
29. Myths, Lies, and Downright Stupidity (John Stossel)
30. The Year of Magical Thinking (Joan Didion)
31. The Rape of Nanking (Iris Chang)
32. Jesus Land (Julia Scheeres)
33. Dave Barry’s Money Secrets (Dave Barry)
34. Dave Barry Hits Below the Beltway (Dave Barry)
35. In a Sunburned Country (Bill Bryson)
36. A Walk in the Woods (Bill Bryson)
37. The Life and Times of the Thunderbolt Kid (Bill Bryson)
38. A Short History of Nearly Everything (Bill Bryson)
39. Three Weeks with My Brother (Nicholas Sparks and Micah Sparks)
40. Why Zebras Don’t Get Ulcers (Robert Sapolsky)
41. A Hidden Wholeness (Parker Palmer)
42. Spontaneous Healing (Andrew Weil)
43. Complications (Atul Gawande)
44. Naked (David Sedaris)
45. Amazing Grace (Eric Metaxas)
46. Mere Christianity (C.S. Lewis)
47. Me Talk Pretty One Day (David Sedaris)
48. The Art of Happiness (HH the Dalai Lama)
49. Nickel and Dimed (Barbara Ehrenreich)
50. A Peace to End All Peace (David Fromkin)
51. A Long Way Gone: Memoirs of a Boy Soldier (Ishmael Beah)
52. Blink (Malcolm Gladwell)
53. Hate Mail From Cheerleaders (Rick Reilly)
54. Why Do Men Have Nipples? (Mark Leyner, Billy Goldberg)



Books I’m working on

1.
Paradise (Toni Morrison)
2. Snow (Orhan Pamuk)
3. The Art of War (Sun Tzu)
4. Andrew Carnegie (David Nasaw)
5. Dry (Augusten Burroughs)
6. From Paris to the Moon (Adam Gopnik)
7. The Shipping News (Annie Proulx)
8. The Hotel New Hampshire (John Irving)
9. The Wisdom of Crowds (James Surowiecki)
10. Go in Peace: A Gift of Enduring Love (Pope John Paul II)
11. Crossing the Threshold of Hope (Pope John Paul II)
12. The Road (Cormac McCarthy)
13. The Echo Maker (Richard Powers)
14. The Happiness Hypothesis (Jonathan Haidt)
15. Snow Flower and the Secret Fan (Lisa See)
16. Stumbling on Happiness (Daniel Gilbert)
17. The Looming Tower (Lawrence Wright)
18. Dispatches From the Edge (Anderson Cooper)
19. The Known World
20. I Thought My Father was God




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