Saturday, June 19, 2010

Waiting Room - Dana 1

Yesterday
It is 7 am and I am at the Radiology department. I have two choices: apple or berry. Better than at Sloan where the choices are banana or banana. I have an hour to slowly drink two bottles of my berry wonderful contrast drink. I warned the nurse that I am not going to drink the second bottle and that I don't even know if I'll be able to finish the first. "Try your best." that's what they always tell me. I try. I know I have to try, since I don't get the IV contrast -I am allergic to it, even when pre-medicated. Without the injection of the contrast dye, my scans are very quick. The radiologists and doctors take more time to read them but I am out of the machine in no time.

At 8h20, I am in the Waiting Area of Dana 1, it was already full. Too many of us here, we could all be doing some thing else, this is the first thought that always crosses my mind. Then I think, at least we all found our way to Dana-Farber, we could not be in a better place. Without my morning coffee and with a belly full of barium, I don't look too happy. As soon as we sit, I hide my face in Ze's shoulder and go into a crouch. "I know how you feel," the man in front of me said. This is the non-verbal message that is exchanged in the waiting area, but usually not spoken out loud. He did indeed. It turns out that he has been living in this cancer planet for 17 years. A good mood is contagious. When he was leaving, I thanked him for making me feel better. You will never guess, what he did after. He sang for me. When he left, I was not the only one smiling in the Waiting Room.

Shortly after 9 am, Dr Shapiro has already seen the scan and has the results. As I suspected the tumors grew. So, I am off the STA-9090 trial. This time my doctor did not have to look for tissues to dry my tears. Since I was not expecting good news, I was ready for what he had to say. The next step is to see my surgeon on Wednesday. We want to hear what Dr. Bertagnolli thinks. The question is: should I have an operation now or can I wait.

I have a lot of pain because the masses are compressing my organs. It is my fault that the pain has not been controlled, I have not been taking any pain medication. Ironically, I am willing to test all these experimental drugs but I hate and avoid safe, FDA approved, common medications.Call me crazy, but it is true. Andrew, my nurse practioner, has tried everything. Patiently, he writes prescriptions that he knows I am not going to fill...

Ah but today I feel better!
Andrew: I am taking an over the counter pain killer every six hours and I filled the prescription for the narcotic pain killer... at least I filled it! ;)
Maura: You don't have to stick me now, hopefully the next trial will be an oral one and I'll have a new port.
Kerry and Diane: I loved seen in you at Dana 1, thanks for the hugs.
Zaza: When I call you crying and complaining about my ^%#@ *&) tumors, you change the conversation and start talking about other things. It must be a technique you use with your students! Well, it works! Thank you, you are my secret weapon when I feel that I am losing my mind.

9 comments:

Rajiv said...

Hi Elsa

You are so positive, stay that way, it will get you through! I hope there is another trial for you soon - have you asked MSKCC whether they have another one?

We are all trumpeting the vuvuzelas for you just like at the World Cup!

Rajiv

Carson said...

I have a million more stories to tell you...please call me anytime
( I MEAN IT!, morning noon or night)...

Carson said...

OOOPS I guess I'm Carson now...
Zaza

jessie said...

Bjs e mais bjs amiga!

Felicity said...

Hi Elsa,
My wonderfully positive cousin.
So sorry the last treatment didn't work, but I know there is one out there for you, specially designed for Elsa Dias. Hang in there, and hopefully some good news around the corner.
Janet sends her utmost love to you, I was speaking to her on Friday. Love, Fliss. XXX

Elsa D. said...

Rajiv, I am going to call Dr. Keohan to see if there is anything... are you still between scans? Lets hope something that works comes along. I am thinking of you

Anonymous said...

Hey Elsa, Nela here, hope you are feeling better. Got back today from Ghana, I will call you when you are better, so we can laugh a little. Beijossssssss

Corrie said...

Hey sweetie,
just want to give you a big cyber hug and let you know that I'm a Dana sarcoma patient too. I'll be thre in a couple hours, so if you've missed it since Saterday, I'll tell it you said hi:) Hope you smile at random silliness today!

Tuomas said...

Hi Elsa, just try to recover from the last experiment and then attack your next surgery. You are so brave!

Tuomas (who is having my 6th retroperitoneal liposarcoma surgery tommorrow)