Sixteen already?

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

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

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.

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

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.

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

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

I had forgotten how good my garden makes me feel.

After the storm

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

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

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!

I think I'm waking up now ;)

article on the Boston Globe: Jimmy Fund Walkers Outpace Recession

Psssssst!

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

Thanks!

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.

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

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

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.