living with a sarcoma

Sixteen already?

2009-11-09T18:46:00.011-05:00

Hoje estou um pouco emocionada. A minha Pipinhas faz dezaseis anos. Já????? Nao pode ser.

Os bolos da vovó Marlene.

My first-born turned sixteen today. Zé says that now I have to act like an adult ;)
Since I am not very good at baking and decorating cakes, I spent part of the day remembering and scanning photos of Filipa´s past birthdays. My mother is the great artist that made most of these beautiful cakes.

The Medical Tourist

2009-11-07T08:53:00.011-05:00

Another One in 8 Million girl. Click here for the sound and fantastic photographs by Todd Heisler from the NYT.
Mary Elizabeth O'Donnell-Moore is treated at Sloan-Kettering for Ewing's Sarcoma.

The Walker

2009-11-06T23:23:00.009-05:00

Todd Heisler/The New York Times
Click here to hear Maggie Nesciur and see the Todd Heisler's photographs.
from the collection One in 8 Million, stories of New Yorkers in sound and images.

Maggie Nesciur walked miles and miles even during treatment for Rhabdomyosarcoma.

2009-11-05T22:25:00.008-05:00

My body is getting back to normal. Two days without taking the drug make a huge difference. I did not forget that I told you (in my last post) that I thought I was depressed... Zé even went to NY with me, to make sure that I would not down play how I was feeling when I saw my doctor ...
But now that I am "washing" the drug out of my system I think I might have confused depression with fatigue...

What is important is that I am feeling good and happy to have 16 drug free days to enjoy. :)

Day 8

2009-11-01T21:04:00.004-05:00

two days to go

I confess this drug is not an easy one to take. I still call it study drug, targeted drug, clinical trial... but I really should refer to it as what it really is: CHEMOTHERAPY

And since I have this blog to complain about my treatments... this week I have to add depression to the list of side effects I am experiencing from the drug. When I crawl out of the hole I am in, I´ll tell you more.

I hope it will happen soon, i don´t like being here away from everyone.

Dr. M.E.

2009-10-26T08:32:00.003-04:00

YEAH!!!!!!!!!!!

2009-10-23T15:42:00.002-04:00

Had not been to NY since September. Today I came with Elsa because she had a CT-Scan and PET Scan and came to find out if she could go on with the study drug.

Yes, SHE CAN.

The tumors were stable, even after interrupting the study for a month due to her infection at the port site. Her doctor was very happy and so were we. I am usually very cool in these situations as I am always prepared for whatever news. My thought is always that as long as we can go on trying something else, it's good if something works, but if it does not, then the fight goes on. But this time, since it worked last cycle, I was hoping it would work this cycle too. So I was a bit nervous and hoping for good news, so it was a relief to hear that the drug is working and that it has stabilized her tumors.

Elsa deserves this, so I am really quite happy. I do not even mind that we have to thread through Connecticut traffic now.

Like Maya says: Yayey!

Scissor Happy

2009-10-19T18:03:00.006-04:00

I had forgotten how good my garden makes me feel.

After the storm

2009-10-19T09:53:00.026-04:00

Here are some photos of my garden this morning. Somehow it survived yesterday's snow storm. Can you believe that it snowed? Snow when I still have my October Garden Chores to do!
This week, before starting cycle 3 of R7112, I have to:
Prune rosebushes
Bring dahlia bulbs in (shout it you want some)
Plant Spring bulbs
Pull vegetable plants and annual flowers
Divide Irises

I know you worry when I don't post for several days but take it as good sign. All it means is that I am feeling good. Actually, I have been away from the blog for a good cause: housework. The thankless task has kept me away ;) .... At least Maya is happy. I have ironed all her clothes, sharpened all her pencils, cleaned her room..

On Friday I am going to NYC for a PET scan, CAT scan and LC scan.
I want to know who can guess what a LC scan is. ;)

It is sunny outside so I am going to prune the rosebushes now.

Aquele Abraço,

Elsa

Only one more day

2009-10-05T17:48:00.004-04:00

at least it is possible to count down. Nine days gone. One left to go... and then 18 days to rest.
I am not going to have a fun day in Manhattan tomorrow. This trial has another (why so many?) 12 hour-study day... This means that I have to get many blood draws throughout the day. Since my train only arrives at Penn Station at 10h20 am I am starting the day late. Most likely I'll be at the Urgent Care of the main MSKCC building at midnight for the last blood draw...

yeah...I am also on the 9th day of the steroids and anti-nausea pills, my mood has not improved. Here at home everyone knows how it is so they just leave me alone with my spider solitaire.

In any case, this cycle went ok. I manged to take morning walks with my neighbor and I was awake for most of Maya's birthday.

Blame it on Decadron

2009-10-01T12:59:00.023-04:00

Now, I am more awake than it is desirable. My eyes are wide open and I have difficulty closing them at night. Decadron, is the culprit. I am taking it in combination with Lorazepan and Kytril to fight the nausea and vomiting caused by the trial drug.

Decadron (Dexamethasone), a corticosteroid drug, is also responsible for my mood swings. I have noticed that when I am on these pills I am easily irritable. I snap (I SCREAM) for no reason (it happened this morning with Maya, sorry baby!) and I have no patience for anything.

In any case, I am taking a low dose of Decadron. We should survive... but I am warning you ;)

I am on day five of cycle two of R7112 and I must say that this cycle is going a thousand times better than cycle one. Well... it had a great start.

My friend Rui flew from Canada to NYC, just to take me to my visits at Sloan-Kettering and see how well I behave during the blood draws!
Sometimes all we need is someone who reminds us of who we were a long long time ago. Obrigada Rui!

2009-09-29T17:46:00.000-04:00

I think I'm waking up now ;)

2009-09-14T17:49:00.001-04:00

article on the Boston Globe: Jimmy Fund Walkers Outpace Recession

Psssssst!

2009-09-13T19:23:00.000-04:00

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

Thanks!

2009-09-13T17:50:00.011-04:00

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

2009-09-13T11:58:00.003-04:00

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

2009-09-13T11:56:00.003-04:00

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.

Me on the other side

2009-09-11T10:38:00.020-04:00

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2009-09-11T07:08:00.002-04:00

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

The port is gone

2009-09-08T10:08:00.010-04:00

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.

Assisting Elsa's Surgery

2009-09-07T16:10:00.004-04:00

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

2009-09-07T13:56:00.003-04:00

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.

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

2009-09-05T10:26:00.020-04:00

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

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.

sailing against the wind

2009-08-30T10:46:00.022-04:00

Not long ago, I wrote an email to Edward Kennedy. I was asking him not to forget "rare diseases" (in another word: sarcomas) in the language of the health care reform bill he introduced in Congress. I received an answer on August 17, on a day I could hardly lift my head due to nausea. In the email he explained to me that the details of the legislation have not been determined, however they were making progress and he was looking forward to working on the legislation with the new Congress. Since I was feeling so weak and sick my immediate thought was to wonder where did Ted Kennedy find the energy to continue fighting for his health care reform, which he called "the cause of my life", while fighting brain cancer. And now the lion of the senate is gone. His skills on negotiating and getting a bill through will be missed when Congress resumes after Labor Day. For us, in Massachusetts, after having him as our senator for forty seven years, it will feel strange .

On August 25th, cancer also claimed the life a friend of mine. Filipa lived less years than those that Kennedy was on the Senate. Like him she spent the last year sailing against the wind. When I am ready I want to write about the incredible 20 months she lived with lung cancer, how brave she was and how she chose where to die. But I am still in that phase when I just have a knot on my throat and no words are appropriate.

R7112 and Alencar

2009-08-28T19:37:00.008-04:00

R7112, the trial I am on, did not work on Jose Alencar, the vice-president of Brazil. I am watching the news on the Brazilian channel, TV Globo, and they just announced that the experimental treatment Jose Alencar was on, at MD Anderson in Texas, did not work. The number of sarcoma tumors in his abdomen increased. But as always, 77 years old Alencar is not giving up. Click here for link to news in Portuguese.
I was hoping that this trial would work on Jose Alencar. His story is so similar to mine (except to the vice-presidency part ;)). He has been through numerous surgeries (two of them with my NY surgeon, Murray Brennan). Just as it happened with me, ET 743 (yondelis) did not work with him.
According to the news report, the next step for him will be conventional chemotherapy. Surgery is out of the question for now.

Eu fico a torcer para que tudo dê certo.