Monday, October 24, 2011

The evolution of the fish and other random thoughts

This week I did not really feel the energy to write much and I thought about skipping this post but I decided not to. Instead I will tell you a bit more about why time might a bit short for blogging for a while and post some short news from the last week.

The evolution of the fish ...
This is a good chance to tell you a bit more about something I did not talk much about here yet - my work. Let me introduce you to Snappy - that is the cute fishy friend on the left hand side. He is my boss. Kind of.

As you may have guessed a person that is on Twitter, Facebook, google + (*yawn*) etc and writes a blog, has a serious crush on the internet and might make the money for living online, too. Correct - that's the way it is. I am working for eCommerce companies for more than 11 years now and very soon, November 1st, I have my 4th anniversary of working with Snappy.

Our fish was born about 11 years ago in San Francisco, CA. He is a happy little creature and he works with photos - Snapfish by HP is a photofinishing service. That means that you can upload your photos from your camera, computer, Facebook, Flickr and so on to our website. Once you have your pictures stored you can share them, improve them with great online tools and - most importantly order prints and create and order a whole LOT of fantastic photo products like books, calendars, cards, mugs and many more. 

I am working in the European marketing team but Snappy - the native Californian - has residences in over 20 countries around the world from the US over to Europe over to Asia and Australia.

As you can imagine our products make wonderful Christmas gifts for a couple of reasons:

- You can create absolutely personal and individual gifts with your own pictures.  
- We offer great products for very good prices and we crazy marketing people also offer you lots of great deals to save some money. Make sure you sign up for the newsletters to not miss the best offers and to make me and my colleagues happy, who send you the funny little mails ;)
- There is a huge world wide team behind Snappy - lovely, crazy (the best way), smart and talented people, who especially in the wild Christmas season work very hard to make you and your loved ones, who will receive your gifts, happy. You always thought eCommerce is kind of anonymous business? See - it's not. It's me and my fellow Snappy people :)

As you can imagine Christmas season is our busiest part of the year and that is the time when for us behind the scenes Snappy turns from a cute little fish into a big time eating shark (the evolution of the fish ;)). So bear with me if my blog posts will be a bit shorter and not so in time every weekend - I am very likely busy filling Santa's bag ;)

And if you have friends and family who also work in Christmas business - be nice to them in the next weeks even if they make themselves scarce. We need a bit of special patience, extra hugs and lots of homemade cookies. Oh - and one or two glasses hot wine punch don't hurt, too. Thank you :)

WOW ... look at my blog baby ...

A little while ago my dear friend, the Pittsburgh poet and writer Justin Hopper, encouraged me to introduce my blog and especially the parts about The Burgh to the team of Pop City Media - one of my favorite Pittsburgh websites I read on regular basis for over a year already.
To my great pleasure they liked what they read and in the past week they featured the blog in their buzz section. I am feeling really honored and LOOK what it did to my blog statistics! That is the October graph and guess, when the newsletter went out. Awesome isn't it? Thanks so much for the shout out and the support.

Dear new readers:  Welcome to my blog! I will keep on writing about Pittsburgh. My next trip is planned for early 2012 and another one for September 2012.  Of course I will post here my travel diaries again with lots of pictures and stories about my favorite city. So watch out :)

Speaking about blog statistics ...
As incredible as the results after the Pop City Media shout out have been, so small have been the click rates on last week's post about bone marrow / stem cell donation and that made me a sad panda, because it is one of my most important blog posts ever.

I of course cannot force you to read it and I totally understand that reading about cancer is not exactly fun, but this post is not about death - it is about life and how relatively easy it can be to save a life. So if you have a spare minute, please check it out and give the whole thing a thought. It is so important that as many people as possible register to give patients with no related donor the chance to live. Thank you in advance for your time and attention. 

Never judge the magic of a moment too early ...
Do you remember when I bought about a year ago tickets for a Pittsburgh Penguins game in February 2011 and organized my New York and Pittsburgh vacation around it?  Do you also remember how only weeks / days later Sidney Crosby and Evgeni Malkin - two of the world's best hockey players - suffered season ending injuries both still not yet fully recovered from? I was not exactly a lucky person, I have to say.

I loved going to my game anyway. I enjoyed it a lot and thank god nobody hurt Kris Letang and Marc-André Fleury and so I got to see two of my favorite players. What I did not realize the moment it happened was, that my game was a very special one - it was James Neal's first game for the Pens. Shame on me, but I barely paid attention. I was more like: "Aha - two new dudes. Anyway ... where is Tanger? Ah - there he is."  

Dear James, sorry for being so ignorant. To see you playing and scoring and scoring and scoring this season is pure pleasure.  I - and I think with me a LOT of Pens fans - am very happy to have you in Pittsburgh. Thank you very much for a GREAT start into the new season and keep it comin'! 

I will be very likely back to Pittsburgh in February / March 2012 for another home game and this year I will definitely watch out for our top scorer with #18.

Monday, October 17, 2011

BE THE MATCH - Save a Life

Wow ... Saving a life. That sounds HUGE, doesn't it? It sounds like something that super heroes with super powers do or fire fighters or paramedics or doctors, but does it also sound like something I could do? Actually - it does.

It was a weird feeling to hold my HLA analysis in my hands these days. For me it's a pretty random set of letters and numbers, but probably it will some day for another person mean a chance to survive a life threatening disease. 

But lets start with the beginning of the story. Back in 1991, only months after my dad lost his fight against a brain tumor and died, my mother was diagnosed with multiple myeloma  - a lymphoma ("blood cancer").  It is a long story I already told here in some parts. For many years the cancer was showing almost no activity before she suddenly became very sick and urgently needed to start chemo therapy (VAD - Vincristine, Adriamycin, Dexamethasone for the specialists between my readers) to save her life. It was the first of what would become an endless number of critical situations and complications - the rough roller coaster ride of lymphoma treatment.

A myeloma is often a slow progressing cancer, but until now there is no cure. That means the goal of every treatment is to keep the patient in remission as long as possible. The standard procedure is a high dose chemo with a stem cell transplant. There are basically two options:

- the autologous stem cell transplant with the own stem cells of the patient
- the allogeneic stem cell transplant with donated cells of from a related (family member) or unrelated donor 

We had some discussions with the doctors which option would be best for my mom and that was when I first considered to get myself registered as a bone marrow donor. First of all I of course would have done it to find out if I could be a donor for my mom although the chance that it works in a mother / child combination is very low. Siblings are usually the best option with about 25% to 30% chance to be a fit.

The decision was finally made to go for the autologous stem cell transplant. This is the therapy standard for myeloma because usually the result of the allogeneic stem cell transplant is not so significantly better that it would compensate the much higher risk of complications. This is different for other lymphoma types like leukemia where an allogeneic transplant can really save a life and be the cure for the patient.
Of course I could have registered myself as a donor at that time although it was not an option for my mom and I remember that I seriously considered it, but honestly we were so caught up in our own struggle with the disease that I did not really made the move.

When my mom finally died it I thought of becoming a donor again, because it would maybe help not only a patient in need but also me to get over the immense feeling of helplessness that was my companion for all the years I watched my dad and my mom struggling.

One important reason, why I still did not register at that time is, that I became pretty sick myself. As a result of my own health problem I was very anemic and could easily compete with the bad haemoglobin test results of a leukemia patient. It took me months after the big surgery two years ago that fixed the basic problem to recover my haemogram and before that a donation was out of question.
Additionally I was so emotionally tired of fighting cancer that when we lost our mom, I tried for a little while to ignore the fact that cancer even exists. But of course it did not really work and soon I was confronted again with close friends or the loved ones of friends fighting cancer. There is no way to hide and when bone marrow / stem cell transplants became part of the treatment plans of some cases in my wider circle, I decided finally to take the plan I was carrying around now for years into action and got myself registered.

How does it work?

If you live in the United States you go here, read all the information and register: BE THE MATCH

If you live in Germany you go here, read all the information and register: DKMS 

PLEASE ... do NOT register with more than one database. They are all connected to each other to a world wide network. If you would register more than once it just leads to chaos in the databases.  

Being based in Germany I ordered the DKMS registration set and received something that really looked like what you know from watching CSI. The package included two big Q-Tips you need to rub inside your mouth against the jawbone. Once that is done the Q-Tips need to dry (make sure they do not touch your hands or the table) and then you pack and label them. Finally you the send the whole package over to the organization and a few weeks later you get your registration number and your HLA result - and you are ready to save a life. Easy isn't?

To be realistic:

The statistical chance that you will one day really receive a call is not so big. Only 1 out of 20.000 people have a genetic set up that is close enough to yours to allow stem cell donation. And that is the statistics for the general population and not of patients in need versus registered donors. But this statistic shows more than anything else how tremendously important it is that as many people as possible get themselves registered to increase the chance for the patients without a related donor to have a chance for cure

But what does happen, when it really happens?

There are two ways to donate stem cells. The choice of the procedure depends on the needs of the patient.

20% really donate bone marrow. In a small surgery under general aesthetic about 1 liter of marrow and blood is taken from the iliac crest of the donor. A 2-3 stay in the hospital will be necessary. The cuts are usually so small that they barely need stitches and the pain is like the pain from a bad bruise.
80% of the donors donate stem cells. For a couple of days before the donation the donor injects a special drug under the skin that increases the natural production of stem cells. When that is done the blood of the donor is filtered in a procedure very similar to a dialysis. Sometimes one session (ca. 4 hours) is enough sometimes it needs two. It basically works like this:

I know - none of the options sound like fun, but one thing is for sure:
Compared with what the patient is going through from the high dose chemo therapy that kills of the whole bone marrow and deletes the patients immune systems to the stem cell transplantation including the risk of a graft versus host effect (when the body of the patient despite all genetic match up does not accept the transplant) it is a walk in the park. For the donor it's just a couple of slightly uncomfortable days - a cheap price for giving somebody the chance for cure, an almost normal and healthy life

BTW - the body of a healthy donor needs only two weeks to fill in the gap of bone marrow / stem cells that results from the donation.

A registration costs about 50 EUR for the genetic analysis. Of course it is for free for the donor since it is important to get as many people as possible registered. On the other hand the non-profit organizations who run the internationally connected databases highly appreciate if you could donate the amount for your registration (I did that) and in general donations are of course more than welcome. Just check the websites for more information.

And now (excuse my French in advance):  LET'S FUCK CANCER!

Monday, October 10, 2011

My book in September

Patti Smith - Just Kids


When Patti Smith's book "Just Kids" was released it just jumped up the bestseller lists and became very popular especially between "my kind of people" - means people with a crush on rock music that was released before or around the year of my birth (1973) or at least sounds like that, people who love poetry, people who love art and especially American art of the 20th century. 

I was personally only mildly attracted because I usually look at booming bestsellers with a bit of skepticism and - even more important - as influential and brilliant Patti Smith doubtlessly is as an artist, I am not much of a fan. Her poetry and music doesn't really work for me. I know this is a bit surprising since I am a huge fan of almost all the incredible artists she mentions in her book, but that's like it is. And I think it's a fair point - my position always is that I can definitely value the creativity and talent of an artist but say at the same time "this is not mine". I see art from a very emotional point of view and you cannot force emotions.

Then came the day when I changed my mind and decided that I HAVE to read this book - February 21st 2011. I was standing thunderstruck in front of Robert Mapplethorpe's self portrait at the Whitney Museum in New York. This picture shows Robert suffering from AIDS, death already present. His face his slightly blurry, he wears black in front of a black background what has the effect that his body is almost vanishing. The center of the picture is his hand - crisp and clear - embracing a walking stick with a silver skull at the top. In my old post I linked to the picture instead of showing it and I do not want to show it here as well, because there is no image I could find in the internet that does the original justice. It looses too much in the usual low web resolution.  

This photography is for sure one of the biggest and most meaningful pieces of art I have ever seen. Robert managed to make the process of dying visible. He captures the in-between. He is alive but he knows he is dying. The process has already started. His presence in this shot is incredibly intense. For me - and I know this sounds like a contradiction - this picture of him dying makes him immortal. There is more presence, emotion, intensity and LIFE in this picture than - sad enough - in many "living" people I met on my way.
When I will go back to New York next year, I'll visit Robert again. That's for sure. I generally want to visit the Whitney again on a weekday morning because a crowded Sunday afternoon was not a good idea - no air to breath in that building. 

And so it was Robert and not Patti who made me download the book to my Kindle and go with them on their journey together and what a trip it was. 

Looking at the book in its entirety I was surprised how unpretentious the language is - especially for  a powerfully eloquent poetess like Patti Smith. Don't get me wrong - I did not expect long and winding florid metaphors from somebody who shared the table with the writers of the Beat Generation, but the structure is really simple and the wording sometimes slightly repetitive. It's not that I did not not enjoy reading a lot - it's just does not rank in my personal list of best literary experiences and maybe it's just me and Patti not having "the groove" - like with her music. 

I also had the impression that Patti really makes sure that she is not gossiping about the incredibly famous people mentioned in the book. She is especially careful with her own ex-boyfriends - famous artists, musicians, writers and actors like for example Sam Shepard. When she describes the ends of her relationships it is often very abstract and modest. She never blames her partners although she sometimes must have been really hurt. On one hand it's a good move because this way she is not driving the attention away from the story of Robert's and hers relationship, but it also keeps the reader sometimes on a certain distance. 

What I really loved is that all the people who crossed her way at the Chelsea Hotel and other places, who became legends and icons of the 20th century like the crowd around Andy Warhol, Janis Joplin, Jimi Hendrix and many more become "human" again in her writing described at eye level, with impressions from real encounters and some cases friendships. Here the unpretentious language is definitely a plus.

But the most moving, most intense and most essential parts of the book are really the ones who focus on the relationship between Robert and Patti - a relationship that was from the first to the last day defined by the deep love and respect both felt for each other. It survived their break up as a couple (drifting away seems to describe it better since there was never a real break up), Robert's confession of his homosexuality, periods of personal and creative development that made them more fall apart than pulling them together. It for sure wasn't an easy love, but which really rich and intense relationship ever was easy?

Most impressed I was about the fact how confident both of them and especially Robert were always about their art. He never seemed to doubt that this was the way to go. Both always defined themselves as artists despite all setbacks and although they had to work many years long hours in other jobs simply to survive. For a long, long time they were neither rich nor famous but poor and starving. 

My two favorite episodes directly relate to this aspect of the book:

When Robert and Patti were very young they would not have enough money for two tickets to a museum or exhibition (I can still feel the pain - museum admissions in New York are still painfully expensive). So only one of them would go in and the other would wait outside to get then a detailed descriptions of what the one inside had seen. One day Robert was waiting in front of the Whitney smoking and when Patti came out he told her that one day they would be both go inside together - for their own exhibitions with their art displayed. It's the same Whitney Museum where I froze in front of his self portrait, the same Whitney where he had several exhibitions, the same Whitney where his memorial service was held. He had a dream and he made it happen. 

In the last couple of days you could find a lot of quotes of  the late Steve Jobs all over the internet. Another person who believed in his dreams, made them happen and who left us the message not to give up but believe in ourselves. What he said fits very well to the way Robert lived:

"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma - which is living with the result of other people's thinking. Don't let the voice of other's opinions drown out your own inner voice. And most important have the courage to follow your heart and intuition. They somehow know what you truly want to become." 

The other episode describes one of Patti's first concerts and suddenly she realizes that Bob Dylan is there. He is her idol - the man she modeled her life after (strong words, but that is what she said), but instead of freezing and getting nervous she takes in the energy and feels more confident than ever. His presence doesn't make her feel small it makes her stronger. She doesn't even mention if she later talked to Dylan and I guess she didn't, because it did not matter anymore. 

All together "Just Kids" is the story about love, about two people being life long soul mates, about the power of creativity, art and dreams. 

It starts and ends with Robert's death. I cried both times. 

Sunday, October 9, 2011

So much I love about my favorite city put in a video

Last night Sylvia Emmenegger McCoy of Burgh Bits & Bites posted a link on Facebook that shows so many of the things I love about Pittsburgh that I want to share it with you here.

Enjoy the great sights, watch Sylvia showing the film crew the Strip District - one of my favorite neighborhoods in town - and sneak with them into Enrico Biscotti Company (it would be so nice if you could hit a "smell the scent" button at your computer).
You can also watch the lovely Sharon Massey of Jagoff Jewelry, who already made some wonderful pieces of jewelry for me,  creating beautiful pendants with the crew at the Society of Contemporary Craft and explore much more awesome things.
And the best is: these guys do a lot of fun things, but there is so much more to explore in Pittsburgh. Some of it you find already listed and described in the postings about my trip last February and there will be much more when I will blog about the two trips I am planning for 2012. 

Watch the full episode. See more Explore PA.

PS:  As cute as the Pirates Parrot is, I perfer to have fun with this cool dude :)!  LET'S GO PENS!

I also have to add here another beautiful video that I found on my favorite Pittsburgh blog "That's Church".  The featured artist's name is Pat. He is from Pittsburgh and works at the Cirque du Soleil. Pure magic ...

Monday, October 3, 2011

The miracle of the spoken word - the (god)mommy blogging adventure

At first I will make it impossible for you to click away from this page soon again anyway if you like my writing or not. "Not fair" you say?  Did I ever promised fair play? I can't remember:

Let me introduce you to the person this posting is about - my niece, 2 years old since September 27. 

She brought me the camera to "Take picture" and so I did :)

I told you so :)

Let's get started with some general words:

I am 37 years old and do not have kids yet.  I (too) often hear comments like this: "Yeah, that is because you love traveling so much. That lifestyle won't work with kids."  No, it's not. "That is because you work too much, you like more to have a career." No, it's not.
The simple truth is: There are a couple of (private) reasons, but in the end it can be summarized as "it just did not happen." 

The plans I had for my life were totally different. I was always sure I would have two kids by my 30th or latest 35th birthday. I was totally clear about it and if my life would have given me the chance to make that happen, I would have these two kids now. But life is never how you are planning it to be and so it did not work out. 

I have now two options: One is to cry myself into sleep and hang around depressed at home. The other possibility is to take it as it is, do my job with energy and as good as I can, see my family and friends, work on my creative adventures and non-profit activities, travel the world if possible, live without making too many plans - and enjoy it. And that is what I decided to do. Life - and that lesson I had to learn - is too short and precious to not to try to make it the best possible.

Okay, done with the rant ... now jump into the story :)

I am a tough cookie when it comes to traveling. I often travel alone ... and it doesn't scare me at all. New York, San Francisco, London ... I am happy to explore, to meet new people on the way and face the adventure on my own. But when I sat in the plane to Northern Germany (my family and I live more than 600 km apart) in late August, I finally was nervous and slightly afraid about how the next couple of days would work out for me. 

My task: Babysitting my almost 2-year-old niece. The in-home-daycare was closed for 4.5 weeks over the summer. That was more time than my sister and her husband could get time off from work and so the babysitting job was split between the grandma and me - the aunt and godmother of the adorable young lady pictured above.

As you can imagine I love my niece and I was super happy to spend more time with her, but I was also really anxious because the last time I tried to take care of her was no fun for both of us. It was at Christmas last year and my sister and her husband had taken the chance of having a babysitter at home to go for grocery and gift shopping. They had not even really left the house when my niece figured out that mom AND dad were gone and that I was definitely not her nanny either. I guess all parents of you, dear readers, know already what is coming: She started crying from the bottom of her tiny heart breaking mine with it and did not stop despite all my efforts until she fell asleep in exhaustion. I guess we both were a bit traumatized after it and during my next visit I was happy to have at least one parent around all the time. And now we would have a full week to spend alone - at least a couple of hours every day until my brother-in-law would come back from his early shift right after lunch time.

But what a difference the few weeks between my last visit (Easter) and my arrival on the last Sunday in August make in the life of a toddler. And in this case it changed everything.
I can tell you - genes are a strong force and my niece definitely inherited my sister's and mine strong crush on words, on language, on books and stories. The effect: for such a tiny girl she knows a LOT of words and she knows how to use them.
I never really thought about it before, but it is so so so much easier to take care for a short person that can actually tell you what she wants to play, to read, to do, to eat or to drink; when a little girl can tell you if she is hungry, is too tired to walk another step, even request a fresh diaper or wants to have the sand removed from her shoes. And it is incredibly sweet. Don't get me wrong - she is no wunderkind (okay ... maybe a little bit ;) and she is not telling you things in complete sentences yet (although that is coming more and more now every day), but she can express herself with words in a way that it blows you away. 

At 90% of the time this enormous ability to communicate makes life easier. The rest of the time is fighting ;). Not really, but kind of. Like here when we had a discussion of where to go. She told me "This way!" trying to talk me into going to the playground and I said "No" because the sand was still soaking wet after the shower of rain before. Let's say ... 2-year-olds really know what they want and this one in particular and so we discussed that for a little while. She was not too happy with my decision. In this picture she is trying  the "I will make a sad face to break your heart" way to change my mind ;).

Let's go to the playground, pleeeease.

Besides the genes there are some more reasons why she already knows so many words. One is for sure that her parents are talking to her in full sentences and not in baby talk and are actively practicing words with her. That sounds more serious than it is. In fact we are calling her "our little parrot" because it is her favorite (and sometimes really annoying) thing to do to repeat every single word we are saying. I often thought she would just repeat to practice the pronunciation without knowing the meaning, but then she would surprise me the next day with using the new word in the right context. It is just incredible how fast such a tiny person is able to learn new stuff.
Additionally she is at the in-house-daycare with kids who are a bit older than her and so she is always very motivated to learn quickly new things (not only new words) because she wants to be able to do what all the other kids can do. She was the last one becoming 2 years old and she was incredibly excited about it. When her birthday finally arrived she did not even have her eyes open in the morning when she proudly announced "TWO YEARS".

And finally there is this huge crush she has on books. She LOVES reading and she will bring you one of her various books to read about 10 times a day. And she knows her books by heart. One time I accidently skipped one page. When I was done reading she looked at me like "That was not such a good job", took the book, browsed to the page I missed and gave the book back to me to read the missing site "Ups" ;).

But my favorite was when I was reading - for the first in one million times - the story of Cowboy Klaus and the Evil Frank and she suddenly said "Must pee."  As you can imagine I immediately checked the diaper, but it was dry and she looked at me like "What is wrong with you?"  And when I picked up the book again I knew why:  right on the next page little Cowboy Klaus needs to pee, but can't go for some reasons. Now I know!

I am quite sure that one reason for her passion about books is my sister and her reading abilities. My sister was always the creative force between us. She can draw (another thing her daughter totally loves), is not so lost when it comes to make music than I am (although the musician in the family is my brother-in-law) and obviously a great actress was
 lost with her choosing another career: She is a fantastic reader imitating different voices and creating all kind of the story accompanying noises. 

I just hope that things will stay like they are now. Of course watching TV is very attractive for kids and might over the time pull away some attention from books (and you cannot keep a kid 100% away from the TV forever), but I strongly believe that the cornerstone is set - once a book lover, always a book lover

Early stages of multitasking: reading & elk riding

All in all we had an incredibly wonderful week with so much fun. We got through all challenges from diapers with LOTS of poop, to cooking and eating breakfast & lunch to extended playground trips (when the weather was better and the sand dry again) happy and healthy
Of course I am missing her now more than ever, but the good thing about a speaking kid is: We can talk on the phone (with my sister coaching when she is "showing" me things, I can't see)  and sometimes we can video chat which is so much fun.
And when I feel really shitty and in the need of a hug and nobody is around, I just remember how she sat on my arm, hugging me with one arm and fumbling with the other hand on the Pittsburgh Penguins patch on my hoodie whispering "Pingin" into my ear.

That week I really learned a lesson about the miracle of communication. We take it so much for granted in our daily life but being with a kid that is just learning to use words, shows how much we rely on language and how much easier life gets when we talk to each other and take the time to listen closely.