Message from Carlos : treatment started

(see below for text in english)

Fomos nos hospital hoje para ultimas avaliacoes e resumo do que vira nos proximos dias. Confesso que agora caiu a ficha da complexidade do processo e dos riscos. Em outras palavras, estou todo cagado de medo (perdao pela expressao). Fiquei com frio e tremendo soh para as primeiras injecoes. Acho que era mais pelo marco do comeco de um processo durissimo, do que as injecoes em si, que nao sao nada doloridas. Agora a noite comeco a sentir dores decorrentes da medicacao. Os ossos doem porque estao produzindo celulas em excesso. Esse processo leva 4 dias e depois fazemos a coleta dessas celulas num aparelho que parece de emodialise, onde todo o sangue eh passado, ficando as celulas que serao congeladas. Sao dois dias coletando celulas, num processo que dura umas 5 horas. Depois disso, proxima quarta feira, comeca a quimio.

Aproveitei para ficar a tarde com a Julia. Ela eh a minha maior fonte de inspiracao e forca. Adoro ve-la crescer, acompanhar cada passo, cada palavra nova. Agora ela comeca a misturar algumas palavras em ingles. Incrivel como as criancas sao perspicazes e percebem a situacao ao redor. Ao chegarmos ao hospital esta manha, Julia me olhou no olho e disse “papai dodoi”. Essa eh a parte mais dificil de tudo isso.

Beijos pra todos.

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Today, we went to the hospital for last tests and explaination on what is next. I must confess that I understood only now the complexity of the process and the risks. I am really scared. I was cold and shaking for the first injections. I think it was more because it is the beginning of a tough process than because of the injections themselves, which are not painfull at all. Tonight I started feeling pain due to the medication. Bones are hurting because they are producing much more cells. This process takes 4 days, then they do the cells collection. All the blood goes through a machine that separates cells, that will be frozen. It takes about 2 days to collect the cells, each day is about 5 hours. After that, on next wednesday, I will start the chemo.

I spent time with Julia in the afternoon. She is my biggest source of inspiration and force. I love to see her growing up, to watch every step, every new word. She is now starting to mix some english words with portuguese. It is amazing how children are perspicacious and aware of what is going on. When we got to the hospital this morning, she looked at me straight in the eyes and said "daddy sick". That is the most difficult part.

Schedule of the treatment - next days

14/5 : Begin Neupogen Injections 960 mcg SQ daily
15/5 : Neupogem Injections 960 mcg SQ daily
16/5 : Neupogem Injections 960 mcg SQ daily
17/5 : Neupogem Injections 960 mcg SQ daily
18/5 : Catheter placement/Stem Cell Harvest
19/5 : Stem Cell Harvest 2nd day (if needed)
20/5 : Start Chemoterapy

AINDA PRECISAMOS DA SUA AJUDA !! / WE STILL NEED YOUR HELP !!

Queridos amigos,

Gracas a todos voces, arrecadamos em praticamente uma semana: USD $81,115.
Um verdadeiro exemplo de uniao, amizade e compaixao pelo proximo.
Obrigada a todos por pelos telefonemas, e-mails, networking, etc.

AINDA FALTAM: USD 218,885.
A nossa campanha para o Carlos continua com forca total.

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Dear Friends,

Thanks to all of you, we could get, in 1 week time, 81,115 USD.
This is a true example of union, friendship, compassion.
Thank you for your calls, emails, netwoking, events, etc.

We still need 218,885 USD.
Let's continue with all our energy this wonderful fund raising campaign for Carlos.

News from Carlos : Dr Einhorn and the hospital

Noticias do Carlos: Dr Einhorn e o hospital
(see below for english)

Hoje visitei o hospital, e tive uma consulta com Dr Einhorn, a maior autoridade no assunto (cancer germinativo). O consultorio era exatamente como imaginava, tinha a camisa do Lance enquadrada e autografada, varias fotos dele, reportagens de revistas e dedicatorias dele para o hospital. Quase todos os pacientes e medicos usam o bracelete amarelo do “Live Strong”. As enfermeiras muito atenciosas e simpaticas, enfim, me senti em casa.

Dr Einhorn fisicamente lembra o Woody Allen, beirando os 70 mas muito simpatico e atencioso. Fiquei muito feliz com a consulta e esperancoso, eles sao os pioneiros nesse tratamento e tem feito ajustes nos ultimos anos com base as estatisticas e novas pesquisas. Por exemplo, alem das duas quimios (que sao 5 vezes mais forte que uma quimio normal), ficarei tomando uma quimio via oral durante dois meses, algo que melhora as chances de cura.

Logico sera durissimo, mas estou preparado e com energia para comecar isso logo. Acho que deve ser a corrente de todo o mundo que me passa forca. Amanha mudamos para um apartamento, espero que a Julia comece a ter uma rotina porque ela sente falta disso.

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Today I visited the hospital, and I had a consultation with Dr Einhorn, the best in this area (germinative cancer). His office is as I imagined it : Lance Armstrong's T-shirt (signed by himself) in a frame, many pictures of him, magazine reports, and his dedications to the hospital. Almost all the patients and doctors use the yellow bracelet "Live Strong". The nurses ate nice and attentive, I felt like home.

Dr Einhorn physically reminds me Woody Allen, almost 70 and very friendly and attentive. I felt really happy and hopeful after the consultation. They are pioneer in this treatment and have worked on adjustments in the past few years based on statistics and new research. For example, in addition to the 2 chemo (5 times stronger than the normal chemo), I will also take an oral chemo for 2 months, to increase the chances of recovery.

Of course this will be hard, but I am prepared to start it soon. I think this is due to the chain of you all that gives me energy. Tomorrow we will move to an appartement, I hope Julia will have her routine back, I think she miss it.

Message from Carlos : listen to your body

Mensagem do Carlos: escutar o seu corpo (see below for english)

Devemos escutar o nosso corpo sempre. Nao cometer o erro que cometi de nao consultar um medico no momento em que estava sentindo dor. Fiquei meses com dor nas costas, e nenhum outro sintoma. Temos que ter sempre em mente que dor nao eh normal, qualquer uma que for, precisamos tentar descobrir a causa. Logico que os medicos nao esperam que um jovem saudavel sem historico de doenca possa ter cancer. Eu sequer cogitava essa possillidade, eu sempre associava minha dor a pratica do esporte, e por isso consultava erroneamente ortopedistas, quando o correto teria sido ver um medico geral para fazer bateria de exames. Somente descobri num estagio avancado, quando tinha metastase ja no pulmao, que se manifestou pela tosse com sangue.

Se eu tivesse mais informacao, se soubesse quais os tipos de sintomas, eu teria evitado muito do que passei. Logico que nao devemos virar hipocondriacos e ir ao medico a cada momento que tivermos algum sintoma, como meu oncologista diz, temos que ter um bom senso. Se tiver uma dor atipica, persistente por varias semanas, entao eh o caso de consultar um medico.

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We should always listen to our bodies. Don't make the mistake I made to nao see a doctor when I was feeling pain. I had a back pain for months. That was my only symptom. We should always keep in mind that pain is not normal. We need to find out where does it come from. Of course, doctors don't expect a young and healthy guy with no disease record to have cancer. And I didn't even thought this was a possibility, I thought this back pain was due to practice of sports, so I consulted orthopedists, when the correct thing to do was consult a General Practitioner who would have done many exams. I only discovered the disease at an advanced stage, when there was metastasis in the lungs, when I coughed up blood.

If I had more information at that time, if I knew what are the symptoms, I would have avoided a lot that I have been through. Of course we don't have to become hypochondriac and see a doctor each time we feel one symptom, but like my oncologist says, we need to have common sense. If you feel an atypical pain for many weeks, you should see your doctor.