Ruthie the Blood Drop & Covo Ristorante!

RUTHIE THE BLOOD DROP:

Our niece, Ruthie, at her young age of 16, has been an incredible support to us during recent months.  We've talked with her about the importance of blood and platelet transfusions in sustaining Gary's life, the difficulty Gary has had obtaining needed medicine from drug companies who refuse to provide it, and the ups and downs of living with a chronic disease.

In addition to raising thousands of dollars for children's cancer research via weekly after-school cookie bakes, Ruthie was in charge of donor-recruitment, today, at her school's blood donor drive.

Here is a photo of our Niece Ruthie at her high school in the Bronx, today!  Over 95 junior and senior students donated, a sizable proportion of the age-eligible student body!  

Way to go Ruthie!!!   You and your classmates are saving lives!  

COVO:  For the first time in nearly one year, Gary and I had a delicious pizza at one of our very favourite local restaurants, Covo.  This is the same place where Garython 1.0 ate brunch this past Saturday morning!  Gary's doctors' appointments went faster than expected this morning, and thus we suddenly found ourselves with a free afternoon - and medical permission to eat out!

We immediately looked at each other and said: "Covo!"  We especially wanted to make pilgrimage to where Garython 1.0 had nourished itself, as a way of saying THANKS to the Garython Community who so nourished our own spirits, but a few days ago.

Gary and me waiting for our delicious roasted veggie pizzas to arrive.  Note Covo sign in background!

A solo of Gary's smiling face.

 After a sumptuous lunch, finished off with the best chocolate mouse in New York City and a tri-sampling of artisinal gelato, we drove home and then walked over to the Firemen's Memorial, which was the site of the Garython 1.0 Reunion Way Station.  We sat quietly for a few moments, visualizing and recreating the memories of Gary's many friends who greeted us here last Saturday.  It really was a party-like atmosphere!

Today, middle of the weekday afternoon, much quieter than the Garython 1.0 Reunion.  But we heard everyone's voices still ringing in our heads.  Here is Gary, in his element, avec café.

Same sweet photo of Gary at the Firemen's Memorial, but looking westward, toward Riverside Drive.

John C. spends entire day at hospital!

MONDAY:   Huge thanks to Gary's friend, John C., who spent ten hours with Gary at Columbia-Presbyterian hospital on Monday.  (I was able to get some errands done, including a flu shot, and also a swim at the YMCA, I'm happy to say!)   Gary's current medical plan involves getting blood tests, with possible transfusions, every Monday, Wednesday, and Friday.  That process takes four to ten hours, depending on the speed of the hospital labs and blood bank.  So it's full-time job for Gary, who is always good-natured about it.

Here are John C. and Gary arriving the hospital at the *start* of the day.  They were only a little less peppy and smiley when they left at 7pm.

After the Garython

It's Monday morning and I'm still feeling the glow of the Garython. I knew it would be great ... but it was an even bigger boost for me than I expected. And not just the fun of watching some computer scientists (like me) struggling to use twitter for the first time.

I said to Brian on Saturday night that I haven't felt this happy in months. With all the hospital time and nonstop focus on medical things, my world has been narrowing lately. The Garython was a big blast of life for me.  It was so great for me to be out with so many friends in such beautiful weather, enjoying - first meeting up with the group at the Fireman's Monument, and then later at Washington Square Park (nicely chauffeured by the Konuru family).  And to hear from good friends and family in Boston, Ohio, South Africa, California, Victoria, and other points near and far.  And so great to see friends whom I haven't been in touch with in way too long.  We'll be in touch, don't worry!

From what I understand this rolling party was enjoyable all around.  So many people said to me "your friend ... is really interesting, or I really enjoyed talking with so and so".   I hope those connections continue.

Thanks again to each of you for this gift right now, something I'll carry with me.  It couldn't have come at a more perfect time.  And thanks especially to John, Edith, Meryl, Shelly, and everyone else who made this happen.

Btw, the day out inspired us on Sunday to venture down to SoHo with friends Meryl and Jim for a little furniture shopping,

And check out these nice photos from the Garython that Brian has posted.

- Gary

Garython 1.0: Pix available here

Gary will write his own post, but for now I couldn't resist uploading my own photos from the incredible Garython 1.0!

More (and better) photos are available on the Garython Twitter Page.  Many other people took photos, and I encourage y'all to e-mail them to me and I will add them to this post.  Or tweet them yourself, or otherwise share them with the Garython Community!

This first batch, below, was taken around noon on Saturday at the Firemen's Memorial, Riverside Park

"Here I come!  Look Ma: no hands!"   Gary, Meryl, Jim, Brian

Donna, Gary, Afshin

Captain John, Edith, Shelly (aka "The Three Managers Photo")

Jing, Kyle, Marion, Deanna, Gary, Emily, Shen

Max, Christopher, Simon, Andy

Tim, Prakash, Mark, Laura, John C.

Garython 1.0's GROUP PHOTO at the Firemen's Memorial!

Katayoun & Afshin strolling down Broadway with Gary!

Meryl, Prakash, Mark, Foster in Riverside Park

Later in the afternoon, around 4:30pm, we rejoined the group at Washington Square Park!

Jan, Michelle, Gary, Clay, Yuling

Same as above, only with Jan looking ahead!

Brian and Michelle

Michelle, Laura, Susan, Ed, Shelly, Brian

Bruce, Mark

Akhila, Harini, Ravi - wonderful chauffeurs for the day!

Gary, Edith, Clay

1/2 Foster, Ted, Yuling

Michelle & Laura

Maureen, Ted, Yuling, Jan, Prakash, Foster, Tim, and Foster

Maureen, Ted, Yuling, Jan, Prakash, Foster, Tim, and Foster

Foster, Ravi, Mark, Bruce, Gary

Brian & Gary

To others... please email me your photos and I will add to this blog, or provide links to your site :-)

Thank you Ella for spearheading Garython 1.0 in Calgary, Alberta!

Joanie and doggie at Garython 1.0 in Boston area

Prof. Peter & Licorice on Garython 1.0 in Victoria, British Colombia

Gary in SoHo

Gary was so energized after yesterday's Garython 1.0 that he decided to go shopping in SoHo!  For expert advice, he brought along his Shopping Diva, Meryl, and her IronMan boyfriend, Jim.

They are a lovebird couple and very photogenic.

Here we are, stopped for take-out lunch at the swank SoHo boulangerie, Balthazar.

Jim will compete in the "LavaMan" triathalon next spring in Hawaii!

Gary is in Seventh-Heaven to be walking around SoHo with his dear friend Meryl, on the left, and a smart iced-décaf, on the right. 

Same photo as above but with eyes open!

The purpose of our venturing into the weekend shopping hordes of SoHo was to acquire that essential item of afternoon-snoozerie: the recliner-chair.   

Energetic Gary leaped out of the car on his own!  But worrrywart me, of course, I trailed behind them, pushing the empty chair "just in case" along the narrow sidewalks, to the annoyance of many.  (One has to feel needed, no?)

The Pompanoosuc Mills showroom has beautiful, wooden furniture all made in Vermont.  Gary (and now I) have several Pompy pieces in our apartment.

Below, Gary is trying out a comfy chair, with Ottoman.  No recliners, though.

He definitely likes this one, but perhaps in a different colour for our place.

(The headphones Gary's wearing, by the way, are attached to a microhpone attached to his jacket that boosts the sound around him.  The swollen lymph nodes have caused a lot of congestion, including around the eustacian tubes of the ears, and thus some temporary hearing loss.  This neat gizmo, called a PockeTalker, really helps.)



(You can plainly see how obviously Gary needs to be using the wheelchair.)

On the way home, but mostly to placate me, Gary finally did sit in the chair for a few blocks, with LavaMan Jim at the helm!

Health update

First, I want to say how blown away I am by tomorrow's garython 1.0.  Leave it to John Martin to come up with something so crazy / great.  Thanks a million times over, John, for the idea and all the effort. And also to all the other people who have been making arrangements, designing t-shirts, and all the rest.  I can't say enough how much it means to me to have such wonderful friends and family who are walking, or who are there in spirit tomorrow.  I am so grateful to have so many great people in my life.  Check out Brian and John's previous post for details about the walk.

It's been a while since I've posted details about my health.  Here's what's been happening.   The radiation treatments in early September worked well in relieving symptoms, but really knocked out my bone marrow. I am now waiting for that to recover.  I was receiving daily transfusions in the hospital.  Now I've been going in as an outpatient 3 days/week, and I've been needing fewer and fewer transfusions each week.

While in the hospital my energy level declined a lot as well.  I had very bad asthma, to the point where I couldn't walk from one room to the next without being extremely out of breath.  Very scary for both Brian and me, especially as the asthma medications didn't seem to be working.  Last week we saw my pulmonologist (one of my favorite doctors on my team), who found the cause:  my lymph nodes in my chest are growing (these hadn't been irradiated) and pressing against my airways, greatly reducing my lung capacity.  He put me on a high dose of steroids, and over the past week my breathing has much improved, and I'm getting my energy back.  I've been using a wheelchair to get around.  The past few days I've been able to walk a couple of blocks each day without it.

What's up ahead?  Well, things are more uncertain than they were a few months ago.  My chances of being a good candidate for a bone marrow transplant are less than they were back then.  We are still aiming in that direction, but we will have to see.  The disease has started to progress again, but with my bone marrow not yet recovered, I am not in any shape right now to receive more treatments.   The steroids are only a temporary solution.  It's a question of timing: how fast my disease returns vs. how fast my bone marrow recovers. And how fast studies open up that I can qualify for, or new drugs are approved.  The disease is no longer responding to "standard treatment", and each doctor has ideas on what might get me to transplant.  Dr. Lamanna has a few possibilities.  We also reached out last week to two new doctors outside of our regular circle, and found out about a few more study options that gave us some more (cautious) encouragement.  Meanwhile I've had more diagnostic tests this week which will tell us a lot more next week.  In summary, a lot is unknown right now.

My task now is to focus on the present without worrying about the future any more than I have to.  Thus a perfect time for the garython!

Garython 1.0 Walking the Length of Manhattan! Plus photos of John and Andrea's visit.

I'm pleased to share a beautiful message from Gary's longstanding friend, John Martin:

 

"Save the Date!!

Garython 1.0 will be held this Saturday, October 26th. We will walk the entire length of Manhattan, from Northern Manhattan to the Battery (more or less), with ample stops at restaurants along the way.  You can walk the entire route, which will be about 15 miles, or choose any number of the shorter segments.  

We will be taking live photos and videos en route and transmitting them to a website where Gary will be able to see them and monitor our progress.

For more information, please email John at "Click here to e-mail John Martin", and include your mobile number.  John will send you the final route and timetable, and you can choose where you would like to start.  Most of the route is very close to #1 subway line, so it will be easy to get to and from any part of the route.

Gary loves to walk and we love Gary!"

UPDATE!!

As of today, there are over 50 people walking in New York, and a dozen people elsewhere who will be walking in their cities.  We plan to share photos and videos in real time during the walk via Twitter and Flickr.

If you would like to participate and have not already let John Martin know, please send email to "Click here for John's e-mail address" with your mobile number and t-shirt size, and he will send you the latest route and timetable.  "

GARY'S CAMEO APPEARANCE:  Gary intends to greet the walkers at the Firemen's Memorial on the Upper West Side, and hopefully at one of the other waypoints (where coffee is sold).   Harini has offered to drive.  

Follow the latest Garython 1.0 news on Twitter by clicking here Twitter Garython 1.0!

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About twenty years ago...  JOHN, ANDREA, and Gary shared an office together at NYNEX Science & Technology.  Last Friday afternoon (Oct. 18th), they held a mini-reunion while Gary got his blood transfusion at Columbia-Presbyterian hospital.  Below you can see how relaxed and happy he is to have these special visitors.  

Andrea lives several hours north of the City and brought us those three, orchard-picked apples.  They were delicious!

Gary is home!

We arrived home at 11pm!  Gary could have stayed overnight in hospital, had he wanted, but we chose to come home.  It was very emotional for me!  And for Gary, well, all I can say is that he is back in his element!  Already, he is busy debugging the AppleTV connection and manipulating the five different TV remote controls, with the MacAir by his side.

There's a big backlog of photos and other news, which Gary and/or I will attend to in the coming days.

Kenny at Firemen's Memorial - September 15, 2013

Gary's brother, Kenny, visited us at home, on September 15th.  This was Gary's most recent day outside, as we went to the emergency room that very evening.  We had a really nice time together that day and truly made the most of it.

Gary was feeling a little chilly that day, so he bundled up.


In retrospect, I can see by Gary's clothing and the expression on his face that he wasn't feeling so well.  He was exhausted later than afternoon and would be diagnosed with pneumonia the next day.  He hasn't been home since, but we are working hard to make that happen!!!  But likely it could be another one or two weeks.

More photos

Our friend, and now social-work student, SHARI, walked in last week's  Light the Night Walk in Queens, which raises awareness of blood cancers and pays tribute to those affected.  We love Shari's support and encouragement and were with you in spirit, Shari!

In the past, I have never decorated Gary's hospital rooms.  The stays were always temporary, and at some emotional level I resisted the idea of making "home" out of a hospital room.  

However, as we are now into Gary's 4th week in hospital, I realized my error and have posted up cards that people have sent Gary and me.  Needless to say, they are really appreciated!!!  Especially now.

This beautiful rainbow card contains a lovely message and the sweetest of thoughts from our eleven year-old niece, Rachel! 

The direct message in this card is from Joanie, no surprise there!

I sent Gary this Bassett Hound postcard.  Of course, that's me pulling on his ear for attention.

These two handmade cards, with photos from their Ontario farm, are from Natalie and Gordon, who visited us in August!  They are raising various barnyard and indoor animals!

Above are two of their fowl.

This beautiful hand-painted card, with a deep message of friendship inside, was made by our biologist friend, ELLA, in Alberta.  Although it was sent last December (!), we keep it on deck because the artwork is so captivating, and the message so moving, to us.

This last photo is totally goofy but too fun to resist!  In August, our niece, Rachel, created these beautiful hand-decorated cupcakes!