"Doing My Own Thing", oil on canvas, 90X100 cm
In December of 2006 I was in Brazil, but did not feel like dancing the samba. I was staying across the street from Ipanema beach in Rio de Janeiro, and I did not want to plunge into the waves. I did not even feel like walking along the beach. I was happy just sitting and drinking my favorite drink in the world, coconut water. If not sitting on the beach, I would sit with a book in the hotel room.
Such behavior was highly unusual for me. Normally I enjoy the beach at the earliest hour, without the crowds and the strong sun. Walking, running, swimming. Or else walking in the old part of Rio looking at its wonderful, crumbling, colonial architecture. There I was in Brazil with music bursting from every corner, every open door or window, where walking is difficult because your body just wants to sway to the contagious rhythms, and yet I did not dance.
Something was very wrong.
When we returned to Spain I spoke with Dr. Hamblin. Upon learning how low my hemoglobin was – 8, when it should be 12-16 – we flew to Bournemouth the next day and Dr. Hamblin took blood for a Coombs test to see whether I was suffering from autoimmune hemolytic anemia. The lab results confirmed his diagnosis.
Hemolytic anemia happens when a defective immune system attacks perfectly good red blood cells. The red blood cells, which are crucial oxygen carriers, are killed off faster than they can be replaced by the bone marrow. So the result is anemia, low hemoglobin levels and low hematocrit. If left untreated, autoimmune hemolytic anemia is life threatening.
After discussing possible treatments, Dr. Hamblin recommended I begin treatment immediately with Chlorambucil, Prednisolone and Allopurinol. Clorambucil, until recently, has been the first-line chemotherapy for CLL, and it is considered to be the mildest. The Prednisolone was to treat the hemolytic anemia, and the Allopurinol was to counter-act some of the side effects of the Prednisolone.
I was to take Prednisolone until my hemoglobin rose. Both Prednisolone and Allopurinol are important to the cure, but both have nasty side effects, both immediate and over a longer term.
Some weeks into the treatment I developed a terrible allergy to Allopurinol so it had to be suspended. This was followed by neutropenia, which means not enough neutrophils to fight infections. At one point I was rushed to the hospital with very high fever that kept getting higher. In a separate episode, I had what is called fevers of unknown origin. I also had to have a blood transfusion. I was lucky if during all the time the treatment took place I could sleep more than 3 hours a night. That part was fine with me though, as being insomniac, I enjoy those secret hours of the night when the whole world is asleep and I feel I am the only person awake.
Considering the grave threat posed by hemolytic anemia, the treatment was not too bad. After 5 months Dr. Hamblin had me discontinue medication. I did not get complete remission, but I got cured from the hemolytic anemia, my spleen decreased somewhat in size, and my leukocyte count even normalized. Throughout these months I bombarded Dr. Hamblin with questions and doubts. He was always wonderfully patient, explaining everything over and over and dispelling my fears and doubts. Dr. Hamblin again saved my life.
And I started dancing the samba again.
To be continued.
Oi Celeste. Obg pela visita e o muito simpático comentário :) Tb visitei e gostei muito do seu recente blog. Voltarei e sim... dançar samba é preciso! ;))Abraço. Lucília
ReplyDeleteHi Cleste Maia,
ReplyDeleteWhat a story and what an experience for you glad you have the good doctor Hamblin to see you get the right treatments but bloody hell you went through hell there.
Glad you are doing better and can samba again like you should.
Have a good Sunday.
Love,
Hewrrad
Good grief! I understood that as I'm an old Medical Technologist, which in the States means I'm the one who would have run the tests on your blood. Not a good disorder to have, but I'm glad you are in remission and doing so well.
ReplyDeleteThanks for visiting my blog and your nice comments. I'll come visit again.
Hello Celeste-- Thank you so much for stopping by Dharma Bums and leaving us such a lovely comment. You have a beautiful blog here. Your paintings are very fine. I like your perspective and artistry very much.
ReplyDeleteI will stop by again and read more of your posts. I hope your health continues to improve everyday.
Very nice to "meet" you.
What a story and happy to read that you are recovering. I'm dancing the samba with you!
ReplyDeleteThis is a great painting with such a interesting perspective! I can´t belive what You´re going through...I really hope You are getting better! I love dancing samba...or anything actually!
ReplyDeleteLiisa
É lindíssima a pintura que dá o nome a este blog. Vim aqui ter através de uma amiga que vive em Madrid e faz excelentes fotografias que tenho tido o privilégio de pôr no meu blog. Desejo-lhe toda a sorte do mundo.E fico à espera de mais pinturas.São muito tranquilas.
ReplyDeleteum beijinho
That answers my question about CLL. It is definitely a disease. It is wonderful that you have it under control.
ReplyDeleteYour blog is beautiful. I like the layout very much, and your paintings are spectacular. Thanks for stopping by my blog. I am trying to learn more about managing it so that it will be visually more interesting.
I love writing here and getting marvelous notes like these and the ones you leave on my blog. Thank you so much for stopping by. I hope you don't mind, but I have added you to my blog roll. Hugs.......Hope you are dancing on your balcony....at dawn in the cool.
ReplyDeleteI didn't know Dr. Hamblin was your Doctor!Way cool!You have the best and I love your beautiful blog.Dancing the Samba with you too!!
ReplyDeleteGod Bless,
Deb
www.cllcfriends.com
Celeste, just love this painting of Joana! It is so you!!!
ReplyDeleteYour story is so moving and inspiring, as you are always. I have never visited a blog before, and yours is pure magic.
Thank you!
Beautiful painting. Sounds like you have a wonderful doctor.
ReplyDeleteThere is such a feeling of peace and surrendering to the universe in your painting. Hope you are doing better :)
ReplyDeleteAbout 10 years ago, I suddenly went into anaphylactic shock and almost didn't make it. They said I was highly allergic to shellfish, and I couldn't believe it as I ate shrimp and all sorts of shellfish all of my life. Go figure... the tricks the body plays on you.
You are very blessed to have recovered so quickly. My son has the same and had diverted for years. Beautifully written story. I know my son will soon be dancing!
ReplyDeletegood blog :) here's a website about anemia if further info is needed http://www.whatisanemia.info
ReplyDelete