Enjoying Life
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.
Marie-Chantal
Hi MC,
I admire you after reading your blog about the recent years of battling Leukemia. I would like to share some thoughts with you.
My brother was diagnosed with Grade IV Guts GVHD, and the prognosis was poor. Please email me at cfai84@gmail.com since there are some personal and confidential information that might not be ethical to share in the open. (code: VGH)
Marie-Chantal,
I am not really a blog type of person but I just couldn’t leave your page once I found it. You are so amazing! I haven’t read very much but what I have read is just…wow. I really enjoy your writing style, it’s really personal and I love your sense of humor. We got to keep our sense of humor to survive!
I stumbled upon your blog while looking up symptoms of GVHD and I am so glad I did. I am a survivor of CML, well I guess I’m not in remission anymore but I still like to say I’m a survivor
I was diagnosed in 2006 when I was 17 and had my transplant the following year. I was in remission until a few years ago and have been taking Sprycel to keep things under wraps ever since. I just had a Donor Lymphocyte Infusion in Feb. and I think that’s what triggered my second GVHD experience. I’m at the early stages right now but those tiny little bumps are spreading pretty quick. It always amazes me how quickly one’s body can betray itself. I have been revisiting the time I spent in the hospital and the dear friend I met and lost on the cancer unit we were treated on. Your blog is inspiring and you are a beautiful person. I have been thinking of writing a book about my journey, maybe I can get some pointers from you?
Hi Meighan,
Thank you for taking the time to send me a comment. Yes indeed, people often think that a transplant is the answer to it all. Unfortunately, some of us are also dealt with various GVHD issues.
I understand about the little bumps. Not so much every day, but on a regular basisi I touch my neck to see if they’ve come back. I have an ear infection and therefore have a lymph node on that side and I must remember it’s a normal infection fighting lymph node, not a lymphoma one. It does trigger stress when you feel the bumpies as I call them.
As for writing a book, I would love to do that as well but somehow am still blogging as things are still progressing, developing, happening. I’m not sure how to go about turning this into a book. I’ll have to research that.
Hang in there and keep living each day to the best of your ability and enjoy yourself despite the emotional stress. Find something to laugh about, there’s always something funny somewhere.
Marie-Chantal
Vancouver
You now I am so inspired by your blog, and so I have nominated you for The Very Inspiring Blogger Award. Love your writings! http://lifewithsarcoidosis.com/2012/06/17/the-very-inspiring-blogger-award/
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The template is basic but I have adapted it myself as I am a photographer. Glad you enjoy the layout and the content.
I have enjoyed your blog tremendously with every posting and I nominated you for the Versatile Blogger Award. Congratulations! See the post at this link http://lifewithsarcoidosis.com/2012/03/26/versatile-blogger-award/ and I look forward to many more posts from you. All the best! Basil Rene –http:// lifewithsarcoidosis.com
Thank you.
Marie-Chantal
Dear Sweet Pea!!!!
What’s wrong with your e-mail address? I keep sending you “lets do this” or “get together when” and no reply. I’m working downtown at VAC this week, and I’m free after 5 pm, except Thursday. So pick from the following: walk along seawalk, coffee/drinks, meal, movie, kitchen shopping or make one up. But surely you can make time between naps & throwing up? Audrey . Home e-mail: audreysorensen@hotmail.com, Company e-mail: carrotmanagement@yahoo.com, VAC work e-mail: Audrey.Sorensen@vac-acc.ga.ca
I’m thinking you might be sending your emails to my work place. Send emails to mariechantalm@shaw.ca
Hi Marie-Chantal
I too am about to undergo a stem cell transplant due to having multiple myeloma – a rare bone marrow cancer.
I stumbled across your blog as I was looking for images of a Hickman line on a woman. I’ve just had mine fitted and got my girlfriend to take some photos to put on my blog. Some of them however, are quite revealing, so seeing yours was helpful.
I’ve just subscribed to your blog and you’re more than welcome to follow mine.
Good luck to us both!
Jet
Glad to hear from you. Welcome to my blog. As for the Hickman Line, I think mine is weird where I think it’s pretty centered rather than being more to one side. Oh well, although I hated when it went in, I am glad to have it. It has made everyday life so much easier when it comes to meds and bloodwork.
I have had mine for 4 months now and if things continue to go well, it should be coming out soon.
I’ll check out your blog as well.
Good luck to you on the transplant.
Marie-Chantal