Please sponsor us!!

I am super excited!!!, so far we are already 12 friends to do the Susan G. Komen in San Francisco. We have committed to raise between all of us $27,600 and we have so far already raised $2,970!!. If we do not raise that money we will not be able to make the walk and there is nothing that I would love more than walking 60 miles or 97 Km with these group of wonderful ladies.

Please sponsor one of us, the team web site is below. Even if you can only do $1, that is better than nothing.

Thanks very much in advance
Mila

http://www.the3day.org/site/TR/2012/General?team_id=203039&pg=team&fr_id=1768

How to raise money for Susan G. Komen

My dear husband sent all of us an E-mail the other day that you should all look at....I think it is very funny and some ideas might be good but this is how my husband is helping us!:

- Calendar girls -> you are 11 so far. You will need a new volunteer to complete the year. I can be ”September” if a 12 person doesn’t show up… You welcome!

- Plasma Donation: How to sell your blood for $260 a month – (http://madhubber.hubpages.com/hub/plasma-donation)

- Sell your own stuff on eBay or Amazon -> Even if you believe what you have in the garage is just junk… Well! It is but there is always someone out there ready to buy. Better than Yard Sales (For British : Car boot sale) because you do not need to display all your “miseries” in front of your neighbors.

- Offer your Services to Neighbors -> Babysit, handywoman, teach something to others, Dog walker

- Vegas -> Gambling. It is not my “cup of tea” and very risky but I know some of you have issues with this activity and might work when is for a good cause.

- Money box – This would be for all those coins that end somewhere in the sofa, underneath furniture.

- Metal Detector -> This is more for Summer season and the beach. Get one (Starting at $49.99 in any convenient store) and look for coins, gold, etc… meanwhile you walk (Training). This way you make of the training time a money machine maker.

o Go to http://goldprice.org/ for more information.

- Hand reading – You can make a fortune in short time doing this. For a quick course go to: http://www.wikihow.com/Read-Palms. And watch this video http://www.youtube.com/watch?v=XSbXfGRFBLg&feature=related.

Please donate on http://www.the3day.org/site/TR/2012/General?px=6469313&pg=personal&fr_id=1768

Susan G. Komen 3-day walk

Now that my main cancer treatment has finished it is time for me to start doing something in the community that will help the fight against breast cancer. There were two options for us: Avon walk in July and Susan G. Komen in September. As many of my Spanish friends are going to Spain during the summer we agreed to do it in September.

Susan G. Komen 3 day walk is in San Francico and a total of 60 miles during 3 days that is full of experience. Lorraine and I went to a meeting the other day and it was really emotional, can not wait for the event to be here. However before that happen we better start training properly as 60 miles is almost 100 Km that I have never done in my life in such a short period of time!!!.

So far we will be around 11 of us, including Cheryl Sole, 5 year survivor. Marta Solsona, breast cancer fighter with me. And all my dear friends Fiona, Lorraine, Marcela, Monica, Gema, Neus, Rosa and probably some other friends that we might get to join us. Our team is called "Pink melting pot"

100% of the net proceeds from the Susan G. Komen 3-Day™ benefit Susan G. Komen™ and fund innovative global breast cancer research and local community programs supporting education, screening and treatment. Virtually every major advance in the fight against breast cancer in the last 30 years has been impacted by a Komen grant.

Please take a moment to see our page and please sponsor us on any amount you can, small is big so please $1 will make us very happy. Each of us has to collect $2,300 in order to do the race, but we will find whatever way we can do to make it!.

http://www.the3day.org/site/TR/2012/General?px=6469313&pg=personal&fr_id=1768

DE BOCA EN BOCA Y DE MEDULA EN MEDULA: Comunicado de pacientes sobre la donación de médula en las redes sociales

 

“Las personas que esperamos una donación de médula nos sentimos marginadas, exigimos al Gobierno campañas de sensibilización”

“Las personas en lista de espera de donantes de médula tenemos que acudir al Do it yourself-háztelo tú mismo intentando conseguir donantes en nuestro entorno, en vez de contar con el apoyo de Sanidad”

Como pacientes afectados unidos a través de las redes sociales (Facebook, Twitter) , que precisan o pueden precisar de un donante de médula y con el apoyo de otros muchos afectados por otras patologías y gente concienciada creemos importante dar a conocer el sentir general de las personas en espera de donante:

Independientemente de la guerra abierta entre la ONT y DKMS y sus problemas legales, nos indigna que la dejadez de las Autoridades lleguen a este extremo (La donación de médula, paralizada por las deudas. La Verdad) y comunicamos que:

1- La sanidad española debe recapacitar sobre el sistema español de donación de médula ósea y reconocer que se necesitan profundas mejoras. Es un sistema obsoleto y no funciona.

Se debe desvincular la donación de órganos de la donación de médula. En un país indiscutiblemente pionero en donaciones de órganos donde el sistema es un ejemplo para muchos países , estamos a la cola de donantes de médula ósea con sólo 90.000 donantes en 20 años. En España, aparece donante sólo para el 60% de los pacientes en búsqueda.

A modo de ejemplo respecto a número de habitantes (www.bmdw.org):

PAIS	Nº DONANTES	% HABITANTES DONANTES
Alemania	4.312.965	2.5%
Estados Unidos	7.000.000	2.5%
Chipre	111.976	12%
Israel	700.000	10%
Portugal	261.144	2.6%
Brasil	2.213.160	1.5%
España	88.382	0.2%

Nos sentimos marginados. Sin campañas de concienciación ni sensibilización que ayuden a fomentar la donación de médula ósea en España, somos los propios pacientes y allegados los que tenemos que hacer campaña, la mayoría de las veces, encontrándonos con trabas, impedimentos y desaprobaciones por parte de las autoridades sanitarias de cada Comunidad Autónoma.

Por eso pedimos que:

- Se realicen campañas de información en medios de comunicación promovidas por el ministerio de sanidad sobre en que consiste la donación de médula dando a conocer el procedimiento de aféresis, método utilizado en el 80% de los casos y gran desconocido, con el cual no hace falta anestesia, ni es doloroso ni peligroso para el paciente.

- Se publique información en los CAP, Centros de Atención Primaria dependientes de la Sanidad Pública sobre la posibilidad de donar médula ósea o sangre de cordón umbilical

- Se informe a los donantes de sangre en los lugares de extracción de sangre sobre la posibilidad de donar médula ya que ellos son los potenciales donantes al tratarse de sangre.

- Se permitan las campañas masivas con la imagen de una persona en concreto. Los pacientes no vemos ningún problema en ello siempre que se aclare que la donación es universal y puede ir dirigida a cualquier persona en el mundo. Si las leyes actuales no lo permiten, pedimos que las cambien. Es evidente que esas campañas funcionan por que lo hacen en otros países y creemos que la única razón para que no se efectúen es el coste de los tipajes (análisis que deben hacer a cada donante para incluirle en el Registro) que tiene un coste de 300€.

- Se terminen con las trabas, impedimentos, saturaciones y que se producen en los hospitales para donar médula cuando un caso particular sacude un territorio determinado. Deben poner los medios suficientes, agilizar los temas burocráticos y ampliar el horario y facilitar las donaciones en esos casos puntuales.

- Se informe obligatoriamente a todas las embarazadas como norma y derecho de las mismas sobre la posibilidad de donar su cordón umbilical.

2- Estamos de acuerdo en que DKMS debe cumplir con la legalidad antes de actuar pero no debemos olvidar que la mayoría de los donantes (mas del 50%) que se reciben para pacientes españoles son de Alemania, y de estos, la mitad son donantes de DKMS.

Por tanto, hasta el momento y desde hace 20 años, sanidad ha estado pagando el importe que cobra DKMS por cada uno de esos donantes alemanes. No entendemos por qué nos hablan de privatizaciones. Esos 14.000 euros hasta el momento se han cobrado a sanidad, NO AL PACIENTE.

Por otra parte, todos los registros del mundo cobran aunque al no ser oficiales desconocemos las tarifas de cada uno de ellos.

Hay que valorar también, el gasto para sanidad del coste de los tratamientos y medicaciones que cualquier persona en espera de donante consume mientras aparece su donante compatible.

Por eso consideramos que la cantidad invertida en donantes, acortaría el tiempo de espera de los pacientes con lo que al final se ahorraría en costes para la sanidad.

Con esto no nos posicionamos a favor ni en contra de que DKMS entre en España, si de que haya cambios sustanciales en el sistema sanitario respecto a la donación de médula ósea con urgencia.

3- Por último, queremos solicitar a los medios de comunicación, ayuda para dar a conocer la verdad del funcionamiento de la donación de médula ósea y de cordón umbilical en España, aclarar en que consiste y desmitificarla.

También os invitamos a todos los medios de comunicación a que se sumen a la campaña #donamedula para que todo el mundo hable sobre la donación de médula en las redes sociales el próximo 24 de enero de 12.30 a 13.00 horas. Queremos poner de moda esta etiqueta con el objetivo de conseguir el mayor número de personas que se hagan donantes.

Somos un país generoso en donaciones de órganos, si no hay mas donantes de médula ósea y de cordón umbilical en España se debe a la falta de concienciación por parte de los Organismos que deben velar por nuestra salud.

PELONES PELEONES-UNETE!

FIRMA TU TAMBIÉN ESTE COMUNICADO LLEVANDOTELO A TU BLOG Y/O REDES SOCIALES

Radiation side effects

I was just talking to Marta on the phone and told her...."put the cream on...". And yes because I did not think the burn that I have got on my armpit was going to be as bad as it is.
Everything started three days before the end of radiation, the area was getting really red and by the end of radiation the skin was peeling and the under skin was exposed. By Saturday I could not move my arm without being in agony, I had to call the Radiation department which I was really happy to have my doctor Dr Wang on call that weekend. He called me in one minute and told me that unfortunately if the area was not infected there was no much I could do apart from putting lots of cream. At this point all the creams were making the area worst so I could only was Aquaphor that I hate as it is very oily. What I have been using that has been very helpful was Domeboro solution and triple antibiotic cream and Advil. Today is much darker and better but still a pain as you can not dress as quick as you would like to...

I went to see him on Tuesday and he told me it did not look as bad as I told him!, I looked at him like...are you joking?. He thinks is not too bad. Now it is darker but still looks really sensitive and it is painful but not as much as previous days..

So....message to the ones doing Radiation and the ones that have to do it...Lots of cream, as many times a day as you can...

The end of Radiation!!!

Tomorrow morning I will be having my last radiation treatment, 6 weeks later and a nasty burn on my armpit has taken me to the end of this long process.

I was at doctor Chen's office yesterday for my Herceptin treatment, blood work great and she gave me prescription for Tamoxifen. I start that lovely 5 year pill this Thursday and after hearing the horrible hot flashes that i am going to have not looking forward to it!.

Tomorrow my oncologist Dr Wang was nice to fit my last schedule of radiation first thing in the morning because as soon as I finish we are leaving to Palm Springs until Sunday. Can not wait to lay down in front of the pool, weather is so perfect for me to still be able to cover the radiation part without having a heat attack. My plan was to celebrate every milestone and this is the way for the 3 of us to celebrate the end of Radiation, doing nothing on a nice resort!.

Next week I am super exciteed to go back to work at NVIDIA, after I left in May I have realized how much I appreciate that Company and the people who work there so it is an honor to be back. I am sorry had to resign from my current employer but my circunstances are different and also my priorities, some people do not understand that but that is their loss.

Fertility

Cancer changes many things but one very important one is that affect your fertility for life or in my case probably has put me in menopause. There are so many of the people who are fighting cancer who would do anything to have a child and might not be able to have one. But on the other hand there are so many people who are healthy, do not take care of themselves and probably not capable of raising children but they do have more than they can take care. Unfortunately parenthood does not require any type of test or exam, and because of that many people will fail, it is ironic that we pass an exam for driving but not for being a parent.

Why do we want a child so much?, one of the most wonderful things in life is experience a new life and everyone should be entitle to it. Since we are adults everyone creates one way or another a picture of what they want from life: what to study, have a good job, financial stability, a family. The mayority of us will picture kids in their life as we want to feel the achivement of creating new life, building it and mentoring them to become good people.

I still remember the day Ethan was borned, he was so small and so cute, we were the happiest people on earth. I enjoy every single of his accomplishments like if they are mine, we encourage him to be positive, to do whatever he wants to do and we try to teach him boundaries around his life.

However i have to tell you that if you do not have kids life does not end there. It is easy for me to say that I have a son, but let me tell you that we have gone through hell to try to have more kids. It was priority number one and I could not understand why I could not have it. We had 6 miscarriages trying to get a second child, some of them were so dramatic that I will probably never recover from them. Now looking back I truly believe that there was a reason why we did not have that second kid, if my cancer started some time ago a full pregnancy would had been much worse for cancer to spread.

As humans we always want what we do not have, I always recall when Fiona will call me after each miscarriage and will say you have to decide when to stop getting pregnant before this affects more things in your life. We stopped trying last year after realicing that was causing too much trouble in our life. Now I appreciate what I have and expect to enjoy it as much as possible. I just wish everyone is happy with what they have and if they can not have it to find positive reasons why they can not have it.