I used to say I was a Photographer, a Professional Development Coordinator, a daughter, a sister, a friend. Now, I say I’m Marie-Chantal Marchand. I am me – a warrior. I am not my profession. My identity is not established in relation to someone else. I am not this disease. As I like to say, this is not ‘my’ disease, it does not belong to me. It is only passing through.My life was turned upside down when at 40 years old I was told I had Chronic Lymphocytic Leukemia (CLL), in August 2009. That is also the day I began my journey to discover who I really am and what I am capable of.
I was told it was a slow progressing disease and therefore had nothing to worry about for years to come. Well, come April 2010 Lymph nodes began swelling up and I started on a steroid treatment to see if it would take care of it. I was on Dexamethasone for a few months but the lymph nodes kept swelling up. CLL was also Small Lymphocytic Lymphoma (SLL) which is not uncommon. A FISH test discovered that I had a mutated gene identified as TP53 with 19p Deletion. This was complicating things as it interferes with the body being able to ‘accept’ treatment in a normal way. In other words, it puts a wrench in the treatment plans.
In August 2010 I began FR Chemo, to which I had a really bad reaction to Rituximab (total body rigors and nearly anaphylactic. I was hospitalized overnight.
October 2010, after being hospitalized for 31 days, mostly febrile the entire time (extremely high fever for almost 3 weeks) the CLL/SLL had transformed into Richter’s Transformation, or Richter’s Syndrome, or also known as Transformed Non-Hodgkin’s Lymphoma. So many names for a very aggressive disease with a very poor prognosis (5 to 9 months to live). I then began CHOP-R chemo for a few months.
Once Richter’s came into the picture then a Stem Cell/Bone Marrow Transplant became the only option available to save my life. I had a reduced-intensity chemo protocol. The transplant went very well and I was discharged 7 days post-transplant. All was going really well.
I was lucky to have my only sibling as a perfect donor match. I received my SCT on 25 February 2011, knowing that remission was a possibility but that it also might not work and I had a 40-60% chance of relapse.
After having had a stem cell/bone marrow transplant on February 25, 2011, having dealt with CLL, SLL, along with TP53 with 17p deletion, Richter’s Transformation I was in remission and able to enjoy an amazing summer (2011). Come August 2011 I began dealing with multi-organ Chronic Graft-versus-host disease (GVHD) (eyes, nose, mouth, throat, digestive system, vaginal, skin, and liver).
As of January 2012, I have relapsed and the Richter’s Transformation has come back. My doctor had decided to stop all immunosuppressant drugs and steroids to create a Graft-versus-Leukemia/Lymphoma effect, hoping the new immune system would recognize the disease and see it as foreign and eradicate it. I had one round of CHOP-R chemo on February 8th, 2012. Unfortunately, with the immune system not in check, I began experiencing Acute GVHD which landed me in the emergency of the hospital on February 11, 2012 and have been here ever since (at the writing of this update, it has been almost 2 months of hospitalization.)
I have experienced Acute Mouth GVHD, Acute Gut GVHD, Lung infections, Acute Liver GVHD (which is the life-threatening one), and currently I am dealing with steroid myopathy (massive loss of body and muscle mass).
I do see the possibility of walking out of here in a few weeks or a month, but I will be back home and walking on the beach again. Once we deal with all these Acute GVHD issues and everything is relatively under control, we will deal with the Richter’s Transformation and see if we can out it back in remission. Here’s hoping for the best!
Please note that Medical definitions are available in the following pages.
Instead of sending out regular updates to my friends and family, I figured a blog might be easier on everyone. If you are reading this and are a stranger to me, just someone looking for another person going through a similar journey, then by all means you are more than welcome to read, comment and reach out.
Here below is a synopsis of my medical chronology. I tried to think of a funny way to relate the information but alas, here is a bit of serious info.
Both my parents died of cancer. My mother at 45 years old from lung and brain cancer, six years after having been diagnosed and my father at 63 years old from brain cancer, only a few years post-diagnosis. Having experienced and seen the pain and struggle both parents had to deal with, going through chemo and multiple surgeries, then each succumbing to their diseases, I vowed if I ever had cancer I wouldn’t put myself through that pain.
Things are different when it happens to you. I wasn’t too surprised when I was diagnosed with cancer at 40 years old (my family had a long history of various cancers). I was however surprised that it was leukemia. There was no history of leukemia in both sides of my extended families. But still, here I was, faced with cancer and I chose Life. I chose to do whatever I could to keep on living for as long as I could – chemo, transplant and all. Life is too precious to throw it away even if it is strewn with challenges and might have a shorter expiration date.
I will try to keep this lighthearted and humourous however serious information might sneak in.
Comments, encouragements, questions, concerns, visits and hugs (please ask before randomly hugging me and make sure you do not have a cold and kindly schedule your visits so I can schedule rest time) are highly welcome.
Thank you for being with me on this journey.