It’s September 22! It’s International CML Awareness Day and I have something to say!
CML is most commonly known as “Chronic Myelogenous Leukemia” or “Chronic Myeloid Leukemia” (WAY easier to say!), but it is also known as “Chronic Granulocytic Leukemia” and “Chronic Myelocytic Leukemia.”
9/22 represents the genetic mutation of Chromosomes 9 and 22 that cause the rare blood and bone marrow cancer that affects the white blood cells, CML. This is known as a translocation and it results in a Chromosome 22 that is shorter than normal. This new abnormal chromosome is known as the Philadelphia chromosome. The Philadelphia Chromosome is found in the leukemia cells of almost all patients with CML. However, there are some exceptions.
The swapping of DNA between the chromosomes leads to the formation of a new gene (an oncogene) called BCR-ABL. This gene then produces the BCR-ABL protein, which is the type of protein called a tyrosine kinase. This protein causes CML cells to grow and reproduce out of control.
There is no treatment that can cure CML, but most patients are successfully treated with targeted therapy TKIs (tyrosine kinase inhibitors) and survival rates have improved significantly thanks to these life saving drugs. I’m not going to lie… they are EXPENSIVE and unfortunately not all patients respond favourably to treatment and will need a Stem Cell Transplant (SCT) as a last resort. Although SCTs can cure a patient of this disease, the procedure is super dangerous and invasive.
There are no known risk factors, causes or ways to prevent this type of cancer. Being exposed to high dose radiation MAY be a risk factor, but that has not been proven.
Excellent sources for all of this information can be found all over the world wide web. Just google “CML” if you want to learn more. I won’t list any specific sources because I do not want to be affiliated with any specific organization. They are all awesome and wonderful.
Now it’s time to get personal. As most of you know, my loverman, Kevin, was diagnosed with CML on November 17, 2013. For us, our CML journey has not been an easy one. It’s been a rollercoaster ride of ups and downs and twists and turns. Kevin is not responding to the TKI treatments and on September 2nd he was told by a CML Specialist that he now has a double Philadelphia Chromosome, his CML is transitioning to a more aggressive phase and he needs to have a Stem Cell Transplant. We will find out more about his transplant this Thursday, September 25th. In the meantime, Kevin has been hanging in there and dealing with all of this insanity with positivity and humor, for the most part. He is my hero and I have faith that he will survive this and I will stand beside him every step of the way!
Since Kevin’s diagnosis, I have researched CML, TKIs and now, stem cell transplants like it’s my job. I have connected with so many awesome CML patients and caregivers in support groups from around the world. There are so many incredible people battling this awful cancer, but one of the most incredible, that I must give a special mention and dedicate this blog to today, is none other than the Miss Cheryl Hay, who left the physical world on this very CML Awareness day (Australian time). Coincidence? I think not.
Cheryl was diagnosed with CML in June of 2012. She also did not respond to the TKIs and experienced severe complications and side effects from them. In September of 2013 ended up in Blast Crisis – The most aggressive phase of CML, also known as ALL – Acute Lymphoblastic Leukemia. She needed a Bone Marrow Transplant asap, but due to a few complications, this transplant didn’t take place until June 6th of this year. She fought a good fight, but in the end her leukemia relapsed and her medical team ran out of options.
Despite Cheryl’s pain, insanity and daily struggles, she documented and shared her story with the world with courage, positivity, sarcasm and humor until her final days.
In the end, she accepted and was at peace with the fact that she was going to die. Here is a photo of her the day before she crossed over, knowing it was her time.
Simply A-M-A-Z-I-N-G! I only hope that when it’s my time, I can go with such peace and awesomeness! Cheryl was a true angel on earth and a force to be reckoned with. She is a woman that resembles how every single person on the face of this earth should live and breathe. Even at her worst she inspired and encouraged others to live and live well. The end of her final message on her facebook blog was this:
“Thanks for all your love and support. I am at peace with what is happening. At least there will be no more suffering. So spend time with loved ones, write your own Bucket Lists and accomplish them -before it’s too late! Xx”
It is a privilege to know her and to love her and she will remain in my heart and in the hearts of many for eternity. Now she is loving, guiding and protecting her special ones from the other side.
More of Cheryl’s journey has been shared over on Michele Bielik Tschirhart’s blog: http://www.leukemiasurvivor.co/ “Leukemia Suvivor (CML)”. Michele is another incredible person that I follow faithfully who shares her own CML journey with the world much like Cheryl did.
I hope that you enjoyed my little contribution to International CML Awareness Day from a CML caregiver’s point of view! Make sure you remember this:
Thanks for stopping by!