Wednesday, June 3, 2009

Another one

We found out today that Elsa will be having surgery on the 18th. Almost exactly one year since her last surgery, after several drug trials, including weeks of traveling back and forth to New York City, it ends again with yet another surgery.

So again we are mustering our strength to face the ordeal that accompanies each surgery. The anxiety before the date, the prep before the surgery, and then the recovery in hospital, dealing with pain and angst.

Yet, life goes on and it will soon all be water under the bridge. There is no choice in the matter, so, as in every other of her eight previous ones, we will face it head on, trying in every way to minimize the preoccupations that add nothing to the outcome and therefore are relegated to the realm of forgotten thoughts.

Elsa, as always, is facing the news with the same strength and resilience that she always displays when this disease throws set-backs her way. There is, of course, a little crying, some anxiety, but it is all transitory. Soon her enthusiasm for life takes over and she begins to look forward to another vacation from the trial drugs and probably in Portugal? Macau? India? Who knows. I only find out days before she makes up her mind.

Anyway, she has nominated me the interim major contributor for the time that she is hospitalized so count on me posting regular updates on what's going on.

Cheers all!

11 comments:

Isabel said...

Say it again: "Portugal, Macau, India"? humm ... sounds very interesting.
beijinhos

tapioca said...

Cá a esperamos anciosamente para, também aqui, a enchermos de abraços e muuuuuuitos mimos.
Vamos seguir diariamente o blog para acompanharmos passo a passo as tuas notícias, Zé.
Beijinhos com a maior ternura para os 4

Anonymous said...

Cá estaremos todos a dar-te força para mais um desafio que depressa vamos juntos ultrapassar e aqui estaremos todos esperando pela tua visita amiga, um grande grande abraço matilde

beijinhos Zé, Filipa e Maya

Anonymous said...

Cá estaremos todos a dar-te força para mais um desafio que depressa vamos juntos ultrapassar e aqui estaremos todos esperando pela tua visita amiga, um grande grande abraço matilde

beijinhos Zé, Filipa e Maya

Kathy said...

Dear Elsa,
YOu are in my thoughts and prayers that this surgery will be a success and that 2009, you will find THE drug that will prevent these surgeries!
A big hug for you!!

Kathy

Anonymous said...

Ola Ze, aqui e a Clara. Da beijinhos a Elsa por mim e que quando ela quiser companhia que me chame. Eu gostava de ir visita-la ao hospital. Podes-me mandar informacoes sobre hospital e horas? Ela tem o meu email. Beijinhos para todos, Clara

CLARINHA said...

Estamos todos a torcer muito...
Espero que escolham Portugal (não é por nada :-) )
Um beijo enorme

Elvis said...

Dear Elsa (Part I),

Hi, from Monterrey, Mexico...first of all I would like to tell you I have a great admiration for you, for your courage, the very brave and sometimes making some fun of it, of this terrible sarcoma you are battling against.

I read about you when my father was sick also from retroperitoneal sarcoma and by reading of your condition, I didn´t feel alone, I knew how rare it was and that at least 2 people were fighting (you and my father Pablo).Unfortunaly my father passed away on Dec.15 2008 at almost 77 years of age.

His histiopathology was a little different from you, he had SPINDLE CELL SARCOMA OR MALIGNANT FIBROUS HYSTIOCITOMA...AND HIGH GRADE...

His first surgery was on june 2007 and the very agressive recurrence was on april 2008.

He also was in quemo drugs...the first time after his first surgery Adriamicyn, 4 courses, 1 every 21 days.
The second time on 2008 in june, Gemtabicine(Gemzar) and Taxotere...

Nobody wanted to do another surgery on him when it recurred...because one of the tumours (there where 3) was somewhat attached to the right coronary vein of the leg...also wrapping musle..etc..very complicated.

Whe waisted time searching..and searching..even we had an appointment with the sarcoma department on june 08, at MD Anderson...they only recommended the above drugs (Gemzar and Taxotere)...these drugs did nothing, to my perception or to my understanding...they only lowered his immune system and the 3 tumors kept growing very very rapidly...and also got an infection on his right leg...and stayed like 10 days at the hospital because of this infection...

Finally I found a surgeon in Mexico City...he with his crew could remove the very 2 large tumours (weighting around 8 to 9 kilograms both) and the other remaining was attacked with radiotherapy...

They couldn´t perform intraoperative radiotherapy...

The tumour was shrinking...the radiotherapist specialist doctor told me because the tumour had a large part of DES-DIFERIENCIATED..cells (sorry my English) and that type of cells responded well to radiotherapy...eventhough the tumour was shrinking his health or immune system was lowering and lowering...eventhough he was with some aminoacids diet...and all the care and love of his daugthers and his wife (my mom)

What killed my father was not the sarcoma...it was his renal and liver failure...

With this I don´t want to make you feel worried or anything like that...my father was a real fithgter, as I know you are..Before getting sick I can tell you he was a super-athlete...he compited in world track and field championcjps winning medals for Mexico...and also he could run 1/2 a marathon before getting sick.--he run some Marathones when he was in his sixties (of age).

But he had a problem...
He resisted to also let himself be treated with some non-alopathic treatments ...like omega-3, herbs, acupuncture and ozone therapy...and with a change in nutrition...he only relyed on allopathic medicine...I couldn´t convince him...

I don´t sell or distribute anything...I´m just a daugther who lost her dear father to sarcoma...

continues part II

Elvis said...

Dear Elsa (Part II)

I do really think any person that has been diagnosed with any type of cancer and MORE..the people with MORE AGGRESSIVE AND RARE CANCERS...should do their research (or their family could help) and try some other things..there is no magic formula of course...and sarcoma seems to be one of the most difficult and complicated ones..that´s why one has to FIGHT WITH ALL THE WEAPONS POSSIBLE

The things I am most convicend it could help (by literature I have very vastly read) are:

ENZYME THERAPY (pancreatic enzymes, and systemic or proteolitic enzymes..good brands like Zymessence or Neprinol) or with Dr. Gonzalez pancreatic therapy (I think he lives in New York...) He had a 13 or 15 year sarcoma survivor!!!!
OZONE THERAPY and Hyperbaric therapy...
RAW FOOD AND JUICING
HIGH DOSE OMEGA-3 (Dr.Ron Pardini protocol...he had a surviving case of lung sarcoma...no surgery..no chemo..only high dose omega...and some kind of diet...) He is at the University of Nevada...

Similar to omega-3 Pardini is THE BUDWIG DIET...only the difference is that the omega comes from organic flax-seed...mixed with cottage cheese for better absorbtion.

And well, I guess aloe vera juice (good quality)could help, and IP6 (phytic acid, this is some type of Inositol from rice bran)...´cause it lowers the ferritin levels..and cancer cells seem to grow more with Iron. (I think Adriamycin drugs and other quemo drugs do this,also with the ferritin leves..only that the have collateral damages to the health)

The diet..is to get more live enzymes and to make the ph more alkaline...the theory is cancer cells multiplicate more in an acidic ph..for this is also helps CESIUM CHLORIDE...it´s faster in case one is running out of time...there are like 2 good sources of supplers in the US

And about another chemo drug...I read about Yondelis...it´s made in Spain...it was made for sarcoma...they are using it in Mexico City already...and in Europe

There is also a palladium supplement Poly -MVA..
Well I will pray for you..YOU HAVE A LIFE AHEAD OF YOU..for your kid and your husband...TAKE CONTROL OF YOUR HEALTH, please!!!!

A hug for you, the best to you in this next surgery...Elvira

Miguel S. said...

Obrigado, Zé. As notícias que conseguires transmitir são muito importantes para nós!

Jessie said...

Elsie, meu amor, força! Vai correr tudo bem, you can do it again! Bj para ti, para o Zé e meninas!