Wednesday, May 19, 2010

My Commandments

1 - Friends and family can lift you up and do what no pain killer, anti-nausea or other medications can do during treatments. Many patients choose to keep their illness a secret. I never understood their position, since it is from my family and friends that I draw my strength.

2 - Find doctors that have experience treating your illness and trust them. In the case of rare cancers, such as sarcomas, it is crucial to be seen in a sarcoma center, even if it means major changes in your life. I was living in the Middle East when I realized that I had to live near the place that could save my life, so I moved.

3 - Don't be afraid. As it has been said before, we should only fear fear itself. This point is easier said then done. A cancer diagnosis is a scary thing because it feels like the rug has been pulled from underneath our feet. There was a period during my treatments, around surgery # 4, that I was very scared. It was then that I realized that what I feared was death. I started thinking that it made no sense to fear death since it does not look like the act of dying hurts and once we are dead we no longer exist. If we do not exist, why worry about what we left behind? To stop being afraid of dying, I only had to be reassured by Ze that our daughters would be alright if I died. Believing that he would make sure of that allowed me to stop being afraid of my tumors. No matter what, everything will be alright.

4 - Accept your limitations and adapt to your new life. I learned to say no to many people. I accepted the fact that I could no longer work full time. I learned not to plan more than one thing a day. I learned that I can no longer multitask. I learned to schedule things for the hours I had more energy. I learned to accept that my energy level no longer went hand in hand with my enthusiasm.

5 - Never give up. Believe that a treatment that will work on your cancer is just around the corner. I have been testing drugs, to see if one will retard the growth of my tumors, for the past 6 years. I have participated in 13 clinical trials and so far only a few had a little impact on my stubborn cancer. But I will not give up my search. I'll probably be one of those patients begging from my death bed for another clinical trial.

6 - Find a way to work through your feelings. Cry if you want, talk to others in a situation similar to yours. What works for me is gardening and writing. When I am frustrated, tired of having cancer, I go to my garden (except during the long months of Winter). I spend hours digging, transplanting, sowing, cutting, watering... and I am able to forget everything. Expressing my feelings about my illness in writing helps me sort them out and archive them also.

7 - Connect with other patients with the same illness. Maybe support groups are not your thing - they are not mine either -, but there are other ways. Especially with the internet. I started this blog and with it I became less lonely. Two years ago, I did not know anyone with a liposarcoma. I was feeling alone. Thanks to so many sarcoma patients and caregivers that have written to me and shared their stories, I feel a lot stronger today.

8 - Optimism. I have never seen a study that shows that optimism helps to cure cancer. I am not counting on my optimism to cure me. But the fact that I am optimistic by nature helps me be able to be happy despite the fact that I have an incurable illness. Where others see my oxygen bottle half-empty, I see it half-full.

9 - Believe in science and stay away from quack medicine. I believe science holds the best promise to cure cancer. There are a lot of people promoting false hope. I always remember that if something is too good to be true, that is because it is too good to be true.


Anonymous said...

OBRIGADA AMIGA .... beijinhos


Got Hope? I Do! said...

These commandments are true and should be an example for all to follow. Positive Thinking does a body good...I hope you are doing well..

tapioca said...

Elsa, tu não páras de me surpreender.
És a minha referência.
Obrigada pelas palavras que escreveste, uma lição não só para pacientes de cancro mas para todos nós.
Um forte abraço e muitos beijinhos com todo o meu carinho e amizade

Je Vois La Vie en Vert said...

Reconheço nessas palavras a Elsinha que um dia foi comer pasteis de Belém comigo.
Também vejo a vida como tu, bem, os meus problemas não se comparam com os teus... Lamentar-se não resolve nada e a boa disposição, o aproveitar das boas pequenas coisas da vida é essencial. Olhar as coisas em frente e ser pragmática também é uma qualidade.
És uma lutadora e serás uma vencedora !
Muitos beijinhos cá da Verdinha

jessie said...

muito bem querida amiga!

Peggy's Unique Cancer said...

Thanks you.
I am struggling with No. 4 these days.

Unknown said...

These are excellent points that I (a fellow retroperitoneal liposarcoma patient heading towards my 6th) also try to follow as well as I can.

Please keep in mind that all you there participating in clinical trials are heroes; even failed trials may help other patients. For example, the drug of your first trial (ET743) is now used world-wide in treating liposarcoma (it unfortunately works only on one type liposarcoma that neither you nor I have but that was only learned from the trials).

I have to figure out how it is possible to become a lab rat myself!

Kathy said...

Great list, Elsa!
I have another to add to the list. DO NOT STOP LIVING. Go to school. Create great art. Live every moment.
Life with an incurable disease is still life which is a gift...a huge gift.

Anonymous said...

Thanks for your words and courage, it has helped in so many ways. More than you can possibly imagine. Thank you.

Anonymous said...

Ten Commandments ...words of wisdom.