Observations 6.12.1

A bit of an introduction to my aunt from a post I totally forgot I had written. Click here to read the full post.

(April 14, 2013)

I'm not sure if I have ever mentioned my aunt before but I should have as she is probably one of the more interesting members of my family. In many ways I'm more like my aunt than I am my mom just as in many ways my aunt and mom are very different. Both loved art but my aunt made it her life as she graduated from two art schools and worked at a few museums including the Philadelphia Museum of Art. Never married she lived in Los Angeles and New York, at one time having an apartment just blocks from where I live now, as well as Brooklyn, Philadelphia, and Atlanta. The Atlanta stop I should ask her about because I never could figure that one out.

My aunt is the world traveling rebellious sister while my mom was the much more serious and at times philosophical one. In that way the two remind me a lot of my sister and I. In art my mom's interests ran more towards classical art and history while my aunt loves all things modern and abstract. When my mom lost her hair during chemo she religiously wore a Penn State cap her daughter forced on her. Last year, after being diagnosed with the same rare cancer as my mom, my aunt refused all offers from my rather large hat collection and acquired a large collection of her own, long printed scarves that flow behind her.

Observations 6.12

It's become the worst possible form of deja vu. Some fifteen years ago I watched as my mom was consumed by cancer and as many years later I watch as the disease slowly but ever so surely takes her sister, my aunt.

With my mom I found myself consumed with rage, rage against a world I felt had deserted me. In many ways I took it out on myself because I reasoned if the world had deserted me it was perfectly acceptable to desert myself. Essentially I was selfish. Now I find I'm more retrospective, thinking more about my life, what I've done and what I want to do with it. I think a lot about my family.

I'm sure one explanation of the difference in reactions is simply age, that magic wand called maturity, the different way a thirty year old's mind reacts to a situation compared to a teenager's mind. How much of the difference comes from the knowledge that I carry the same gene that destroyed both my mom and my aunt I can not say. Along with maturity comes knowledge and with that knowledge comes questions, some of those questions never have an answer. Probably the main question is the simplest, why? It's ironic how the simplest question is also one that has no answer.

It's so hard to put any of what I'm thinking or feeling into words but I had to try if for no other reason than my sanity. When I write, ramble as I might at times, I can see concrete thoughts, this is what I'm thinking. When I talk about my feelings on this or any subject I sometimes change my thoughts before the conversation is over. Normally I like that, I like that my mind is constantly changing, evolving to use an overused word. But in this case I find it all too emotional and feel like my brain is on the verge of burning out. Maybe this will help, maybe not.

But than there are the times I just can't get Birdy's "Wings" out of my head. It is what it is.

Observations 4.14

I sat down to start writing my Sunday Observations and realized I hadn't written anything all week. My excuse is that it was a busy week. I went to a concert last Sunday night, had some work to get finished, and I had some visitors. My aunt and sister magically appeared at my door.

I'm not sure if I have ever mentioned my aunt before but I should have as she is probably one of the more interesting members of my family. In many ways I'm more like my aunt than I am my mom just as in many ways my aunt and mom are very different. Both loved art but my aunt made it her life as she graduated from two art schools and worked at a few museums including the Philadelphia Museum of Art. Never married she lived in Los Angeles and New York, at one time having an apartment just blocks from where I live now, as well as Brooklyn, Philadelphia, and Atlanta. The Atlanta stop I should ask her about because I never could figure that one out.

My aunt is the world traveling rebellious sister while my mom was the much more serious and at times philosophical one. In that way the two remind me a lot of my sister and I. In art my mom's interests ran more towards classical art and history while my aunt loves all things modern and abstract. When my mom lost her hair during chemo she religiously wore a Penn State cap her daughter forced on her. Last year, after being diagnosed with the same rare cancer as my mom, my aunt refused all offers from my rather large hat collection and acquired a large collection of her own, long printed scarves that flow behind her.

I love my aunt dearly so I'm happy to tell the reason for the surprise visit. As I said last year she was diagnosed with same cancer my mom had. When she started treatment her CSA-125 level was in the thousands, normal is below 35. After two surgeries, months of chemo, and some personal treatments she wont divulge her most recent test showed a level below 1 prompting her doctors to say they have never seen such a dramatic shift and even inviting her to join some sort of cancer study.

So yes, after almost having an aneurysm when I saw them at my door it was a very happy surprise visit. Still, deep down I feel like I should warn her doctors what they are getting themselves into with this study invitation.

Observations on Penn State 2.13

I was reading some Penn State news, starting to write my long overdue second scandal update post (l), when somebody asked me what THON is. I may have mentioned this before but THON is the largest student run charity organization in the world. Since it began in 1977 the Penn State IFC/Panhellenic Dance Marathon, or THON, has raised almost $80 million dollars for The Four Diamonds Fund of the Penn State Hershey Children’s Hospital. The fund helps children with cancer and their families by paying fees and expenses insurance doesn't cover and it also funds pediatric cancer research.

Last year Penn State Public Broadcasting made a short documentary called Why We Dance: The Story of THON that explains it much better than I ever could. Rather than try I'm going to post some videos and a link to the full film which is just under one hour long and I think worth watching. The first video is the film's opening sequence and does a good job of explaining what THON is about in just a few minutes. The second video shows the Bryce Jordan Center being readied for the dance marathon, some of it in time-lapse.

The 2013 edition of the THON dance marathon begins this Friday night at 6:00 PM and ends Sunday at 4 PM.

"What we do for ourselves dies with us. What we do for others and the world remains and is immortal," Albert Pine.

link

link

Why We Dance: The Story of THON (full documentary, Vimeo HD)
from Penn State Public Broadcasting
Jeffrey Hughes, Executive Producer
David Aneckstein, Penn State Outreach News Bureau

"DVDs of this documentary are available for purchase through our website here. A portion of the sales goes to the Four Diamonds Fund."

Sunday Observations 11.4

As I write this it is only 40 hours till election day ....

It has been one hell of a week so I don't have much this Sunday but I did have one thing I wanted to pass on. Congresswoman and Chair of the Democratic National Committee Debbie Wassermann Schultz is one of my favorite politicians for a number of reasons not the least of which is that she is a cancer survivor. I was catching up on some reading this week and read an article on her in the October issue of Vogue.

"Her seemingly inexorable rise was interrupted in 2007, when she found a lump in her breast while doing a self-exam in the shower. The cancer was at an early stage, but because of a history of cancer in her family, she was advised to undergo genetic testing for the BRCA mutation. "When the tests came back I realized there were too many people in the room for them to be negative," she says. With her BRCA2 mutation the odds were as high as 80 percent that she would eventually develop ovarian cancer, with a similarly high risk of her breast cancer recurring. She opted to have the most aggressive preventative treatment possible: surgical removal of her ovaries and a double mastectomy."

It goes on to describe how the hardest part for her was keeping the news from her kids until she knew she would be fine and from her colleagues because she didn't want any special treatment. During the 2008 presidential election she campaigned for now President Obama even as she underwent seven operations. I wish I could link to the full article, it's very good, but it isn't online anywhere. Wasserman Schultz is now one of the leading candidates to replace Nancy Pelosi as House Minority Leader if she steps down after the election.

Observations from the Road 5.28

Memorial Day weekend brings the unofficial start of summer along with a very large side of sports. That is if you consider auto racing a sport, something that is the subject of endless debate in my family. Summer doesn't officially start for a few weeks but at times it has felt like summer for months. As always I'll leave the science to my brother but damnit whatever happened to spring?

The weekend also became one of a few reasons to make a semi-planned trip home. I semi because I had planned on a day or two at my dad's but i hadn't planned on the whole weekend. Sometimes plans change. Life has a way of throwing unexpected events in the road, sometimes good, sometimes bad, and if you are lucky some of each all at the same time. It is what it is.

But all that is for another time, possibly.

I was driving through rural Pennsylvania on a Saturday morning and I was struck with a thought. Is there any other local in this country with so many damn yard sales? I know it's a holiday weekend all but still they are everywhere. Even my sis was having one when I left. She seems to have joined 'Light The Night' and is going to donate any money she makes to cancer research. My mini me all grown up.

But back to my sports update. I may be almost six feet tall but I was never the biggest basketball fan. I get into it when one of my teams is doing good but other than that it falls to one of the lower rungs of my sports ladder. That being said what an awesome season the Sixers had and I can't think of one bad thing to say about it. A good young team that got everything it could out of itself. You can't ask for anything more than that. They took the Boston Celtics to the last minutes of a game 7 before inexperience took its toll and the Celtics said it ends now. What an awesome season and an awesome future that team has. Unreal that those two teams have played eight game 7s in their history.

A once promising year of Stanley Cup playoffs begins its final chapter this week with the Los Angeles Kings playing the New Jersey Devils for the title. Not exactly a ratings bonanza for NBC but a good series for fans the series features wide open hockey against the supposedly illegal neutral zone trap. The Kings roster includes both former Flyer Jeff Carter and former Flyers' captain Mike Richards so I'll be drinking for them. Both were traded after last years dismal playoff performance in moves that added some of the six rookies that were on the Flyers' playoff roster this year. Whoever wins it wont be the hated New York Rangers and this is a good thing.

As the Phillies begin to age, and possibly look to rebuild, the Flyers and Sixers seem to have some exciting years ahead. Now I have to get back to the French Open.

One last funny story, one of those small town America things that just makes you smile. Now my hometown is small, only a couple thousand people, but every year it holds a Memorial Day parade. I was driving through town to get a paper and coffee and sitting at the curb in the middle of town were two old fashioned folding lawn chairs. Now this is hours before the parade and there isn't a soul in sight but apparently someone was staking out the prime parade watching spot. Just like the Rose Bowl.

Happy Memorial Day people.

Observations from the Window 5.19

I don't know if I ever wrote about healthcare before, it's a sometimes touchy subject for me. My basic thought is that in a country supposedly as rich as this one nobody should be denied the best care for economic reasons. If we can afford the ability to kill in a historically unknown scale we should be able to take care of those in need. One shouldn't be forced to settle for lesser care because their insurance tier doesn't cover a treatment or drug. In 2009 a Harvard Medical School study said 45,000 deaths a year are directly related to lack of health insurance or approximately the same number as smoking kills. Think about that.

I bring up healthcare now because a good friend of the family recently became ill. She is far from poor but her story still tells something about healthcare in this country. I'll make it a brief story. Over a month ago she began having pain in her side and started weeks of seeing various doctors, receiving various diagnosis, and getting various treatments. The pain continued to worsen and finally her frustrated OBGYN scheduled her for an mri because our friend is highly allergic to the dye used in a ct scan. On the morning of the test she received a call from the doctor's nurse informing her that the hospital's radiologist had cancelled the test. He didn't know a thing about her or her case but cancelled it because, as health insurance raises its ugly head, there are procedures to follow and a ct scan must be performed before an mri. It didn't seem to matter that the test could worsen the problem.

Now totally exasperated and unable to eat much she went to the hospital's emergency room with a friend. At one point she was asked why she came to emergency with a stomach ache, had I been there this is the point in the story where a nurse gets slapped, but than I wasn't. After a day of tests it was discovered she had a growth in her abdomen and surgery is scheduled for this week. She has been in the hospital since than but the insurance company wont pay for her to remain there till the surgery. She has to go home, deal with life's other problems, and be re-admitted that morning.

A thought came to me yesterday, maybe I had seen it somewhere before, maybe not. If we have to live and die with health insurance companies why not just make them non-profits? Why should medical decisions be made based on the profit line? Why should a few individuals make millions running these companies when so many Americans go without healthcare?

In the end history may judge this rich nation on how it treated its poorest citizens when they needed it most.

Observations from the Coffee Shop 2.2

The SOPA blackout of January 18^th may have been a sweet victory for internet freedom but I am beginning to think it was a minor one. Between Google's new privacy policy and Twitter's censorship rules it is beginning to seem as if the web giants fought SOPA for their own private reasons.

Than Google stuck yet again. It seems Google very quietly announced earlier this month that they would allow country by country censorship of their Blogger service which you happen to be reading right now. On January 9^th they revealed they will comply with censorship requests on a per country basis which they will accomplish by using country specific web addresses. If you were reading this in India, the only country effected so far, the address would now have a .in added to it. The announcement was so quiet that it went unnoticed until reported by Wired yesterday. So much for all the vaunted cries for freedom of the internet that were heard only weeks ago.

In some totally unrelated news the Susan G. Komen For the Cure Foundation, the world's leading breast cancer research group, cut all funding to Planned Parenthood. Planned Parenthood used the Komen funds, about $600,000 annually, to pay for breast cancer screening for poor women. Komen, which is the creator of the pink ribbon campaign, said Planned Parenthood was cutoff because of a new rule in which Komen states it will not fund any organization under investigation by any government body. Parenthood is being investigated by anti-abortion Republican Rep. Cliff Stearns of Florida for the gods only knows what trumped up reason. Rumor has it the rule was specifically written to find an excuse to defund Parenthood after pressure from anti-abortion groups and Komen's top public health official immediately resigned in protest.

Evidently, while our minds were elsewhere, cancer became a partisan issue, a terribly sad turn of events for anyone who knows anyone who has had cancer. That pretty much includes all of us. It seems I'm not the only one who thinks that as in the 24 hours since the Kormen announcement Planned Parenthood has raised $400,000 not including another $250,000 from an unknown Texas couple and a $250,000 pledge by New York Mayor Bloomberg.

What ties these two stories together is something that happened last night. In a classic bit of defacing a so far anonymous hacker, not to be confused with the hacker group Anonymous, visited the Komen website. The hack redirected visitors to an almost identical website with the only difference being an ad for a Komen supported marathon. The original said "help us get 26.2 or 13.1 miles closer to a world without breast cancer," which the hacker changed to "help us run over poor people on the way to the bank:"

Like I said, classic.