Here you'll find out how I deal with my recurrent retroperitoneal liposarcoma.
Monday, October 26, 2009
Friday, October 23, 2009
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!
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!
Monday, October 19, 2009
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
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
Monday, October 5, 2009
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.
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.
Thursday, October 1, 2009
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!
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!
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