Tuesday, September 29, 2009

I think I'm waking up now ;)

Monday, September 14, 2009

Sunday, September 13, 2009


Don't read too loud! Elsa's sleeeeping. I think it's till tomorrow.


We did it! We walked 13.1 miles (21 km). I am not sure but I think we did it in a little over four hours. I can't move right now but I wanted to thank everyone who sponsored me. You were fantastic. I have never raised money (or walked 13.1 miles without resting) and you made it possible for me to raise 1.520 dollars! My team raised over two thousand dollars. The fundraising will go on for another month so I think we will reach our team goal.
Again, a million thanks!

Walk report

Elsa called a little while ago. She was pretty excited. There was only five miles left to the Walk and she was feeling great.

Jimmy Fund Walk

The sun had barely risen and Elsa was already geared up and ready for the Jimmy Fund Walk, which is taking place today.
Zaza came to pick her up and they both drove to Newton to start the walk.

Friday, September 11, 2009

Me on the other side

It's not that I was happier, more loved, or a better person before. Quite the contrary. But sometimes I miss my old self. The me that stayed on the other side. I often find myself wanting to rewind the tape and stop it on the morning of the 27th of April, 2000.

This intense desire to rewind the tape just happened. I was getting out of the shower and I got a glimpse of the other half of me, the one that existed before sarcoma. Could my other half be coming back?

Maybe it's just my imagination: because my port was taken out; I got two units of blood, and I gained some weight during my stay at the Manhattan hotel ;)- I mean at Memorial Sloan-Kettering.

... or maybe I am just getting another overdose of Murakami ;).

When I went to New York last Friday, I was planning to come back on the same day. However, since the train ride from Providence to Penn Station is long, over three and a half hours each way, I grabbed two books before I left the house - Sputnik Sweetheart by Haruki Murakami and Viruses, Plagues & History by Michael Oldstone. I am glad I did. Considering the nature of my hospitalization (a sticky bacteria called Enterobacter Cloace), you might guess why one of the books was not touched.

Here are some photos of my famous blue robe and my Michelle.
We could not stop smiling. Yes, I was hospitalized but we both got Fantastic news from the scans we did on Friday. Michelle had two surgeries this summer and now has NO signs of her spindle cell sarcoma and my liposarcomas are shrinking.
On the 15th floor of MSKCC there is wonderful terrace (any terrace inside a hospital is a wonderful thing). We got some sun before going to the Recreation room to make some dreamcatchers.

Michelle send me a photo of your dreamcatcher! I still have to finish mine!
Hugs to everyone from
Me on this side


ELSA CAME HOME YESTURDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, September 8, 2009

The port is gone

Elsa's port, fully accessed.

Elsa during the operation. Yeah, she's under there somewhere.

After the port comes out, the doctor readies it for a proper picture, at Elsa's request.

Here it is after five years serving Elsa.

Hey! Where is it? It's gone.

Monday, September 7, 2009

Assisting Elsa's Surgery

The port is out. Pretty amazing to watch. The surgeon, Dr. Winter, asked me if I wanted to watch and I, of course, could not pass up the opportunity.

It took about 30 minutes for him to coax the port out of her. He began by giving her some numbing medication, which is pretty gruesome to watch as there is no ceremony in the way he sticks the needle with the Lidocaine. Then he covered up the area to isolate it and prevent infection. Elsa was under a sheet, most of her all covered up with just the area where the doctor was going to make the incision showing. Then the doctor took an X-acto knife, or at least one that looked like an X-acto knife and started cutting the skin. Once he had a big enough opening, he stuck a scissor inside and started to pull the skin aside, getting deeper and deeper into Elsa's body. Periodically, he used the knife to cut away scar tissue, until he could stick his finger inside. Then, he started to wiggle his finger inside the hole he opened up, trying to separate the scar tissue from the port. This took the longest time out of the entire operation. Every now and then he would ask for gauze or something like that, which I believe now allows me to say that I assisted in a surgery at MSKCC. Not many people have done that.

Eventually, after some more massaging and cutting, he was able to remove the port. There was quite a bit of scar tissue around the port, so he had to cut it off in order to be able to remove the port. I took a picture, which Elsa will post later. I am now an assistant surgeon, so I cannot be bothered to do things like that.

After the port came out, he sowed up the wound and that was it.

Elsa was, according to him phenomenal. I believe him. She was under the cover, not uttering a sound, although I know she must have been feeling uncomfortable.

As for me, I handled it well, although half way through the doctor's wiggling operation, trying to separate the scar tissue from the port, I became drenched in sweat.

I'm really at awe at what Elsa puts up with to fight this cancer. I really think liposarcoma does not know who it's messing with. There is no hope for it- Elsa will beat it.

I must say, it was also pretty amazing what the surgeon was able to do with what amounted to run of the mill kitchen utensils, properly disinfected- of course. Not that I'm suggesting anyone try a similar maneuver a home, mind you.

Cheers all!

The port will go

It's Monday afternoon, Labor Day. After three days in hospital, the doctors decided that it was time Elsa's port (catéter) was removed. It was in for five years, which by all accounts is a very long time for a port to be in without any issues. So it is not surprising that the port is coming out. Dr. D'Amato tried to obliterate the offending bacteria with anti-biotics, but blood cultures were still coming out positive so now it's coming out and hopefully Elsa will go home soon.

Elsa requested that I take pictures of her port, so she will post them later, perhaps with before and after pictures. Maya will be happy, since she hated the port.

Now that there is an end in sight to Elsa's stay at MSKCC, we are both more relaxed. It was a bad time for this thing to happen, Labor Day weekend, having to be away from Filipa and Maya, but Michelle came by yesterday and that got Elsa's spirits up, not to mention the many compliments she received due to the blue robe Michelle got for her. Elsa was also very excited to learn that there is no sign of sarcoma in Michelle, which made her very happy.

So now we are waiting for the surgeon to remove the infected port. I think though, she is feeling some separation anxiety so I'm going to comfort her.

Saturday, September 5, 2009

a light at the end of the tunnel (for liposarcomas)

after just one cycle, the tumors SHRANK!
Yes it is true! Yesterday's CT scan showed that they


oh I am hospitalized in NYC, at MSKCC, because of an opportunistic bacteria, I had to be rushed to the Urgent Care... but that's just a bump on the road.

What is important is that R7112 is working!!!!!!!!!!!!!!!!!

Many hugs to all of you :)

and to those of you with liposarcomas I leave here hugs full of hope. It looks like, finnally, there is a light (drug) at the end of the tunnel.