I was first inspired to write about my experiences a few months ago when I came across a blog shared on the Leukemia & Lymphoma Society's Facebook page. It is written by a cancer patient in NS (check it out here) and focuses on his thoughts, reflections, treatment, and activities. I didn't get motivated enough to actually start writing, though for a time I thought I might start a comic documenting my experiences while I was in the hospital (3 pages - very short lived).
Perhaps it's better to start writing now that I am beginning to feel more like myself and might actually be gaining some perspective. Things are starting to seem "normal" and I'm in more of a routine in terms of treatment.
Since I am currently unable to work, I'm hoping that writing a blog will be something creative and enjoyable to do with my time along with completing my master's degree. I'm also hoping it will serve as a method of documentation as I go through all of these experiences.
You might be curious about how this all began. I was diagnosed with Acute Lymphoblastic Leukemia on July 21, 2018. I had been feeling off for weeks - exhausted, nauseous, headaches, achy, out of breath after walking up the stairs (listen to your body, people!) but it was easy to attribute these symptoms to being out of shape, being tired, and being stressed. I ended up fainting (badly hurting my ribs in the process) and being taken to emergency. They did an X-Ray (didn't see any broken ribs) and some blood tests. Some doctors came in later saying the blood results were a bit concerning for someone my age but all I could think about were my ribs. They said my ribs were fine but I'd have to see the hematology department in Halifax for further testing. Did I mention my ribs?
So I went home and I waited for an appointment time from the hematology department. A couple days later my doctor called me about the blood results. He was very concerned and wanted me to go in right away. He contacted the hospital himself and set up an appointment for me to get blood work done. I left right away and got the blood work done and was told I would need to come back the next day for a bone marrow biopsy. This sounded scary but I had no idea what it meant. This naïveté definitely helped me stay more relaxed before the procedure and in receiving my diagnosis. After the biopsy was done I found out I had ALL. The doctor spent time going through the protocol. As you can imagine I wasn’t taking in much information at this time.
I spent the next month in hospital receiving chemotherapy treatment and other medications. This was the induction phase of the Dana Farber protocol. The purpose of the induction phase Is to get rid of the blast/immature cells that have developed in your body. Basically, when you have ALL your bone marrow produces too many immature cells. A normal person has under 5% immature cells and I had 75% when I got brought into the hospital. At the end of the induction phase I had another bone marrow biopsy to see if I was in remission which I was with 3% immature cells. If you’re like me, you might think that remission means cure. Remission just means that the signs and symptoms of your cancer are reduced. I will be receiving treatment for two years. Being cured will be if I remain in complete remission for five years or more.
Fun fact: When I was in the hospital I received a letter from the hematology dept. giving me an initial blood work appointment time on August 22nd. So if my family doctor had not advocated for me and gotten me in right away I would have waited another month (the same amount of time I was in hospital) just to get diagnosed.
While I was in the hospital I also shaved my head. I didn’t actually look in the mirror for several days...it was just too hard/sad.
While I was in the hospital I had many tests and procedures done. During a CT scan towards the end of my month-long hospital stay the doctors noticed that my rib was actually broken and I had a pneumothorax (punctured lung). "I KNEW it!" I shouted at them. That pain and discomfort had definitely made the first part of treatment and my hospital stay in general much harder.
After the induction phase I got to come home and moved onto the CNS (central nervous system) phase. I received 8 sessions of brain radiation during this time. I also had several spinal taps/lumbar punctures. This is to ensure there’s nothing bad happening in your central nervous system.
After that phase I moved onto intensification phase where I currently am now. This goes on for 30 weeks and I am halfway through. I have treatment and bloodwork every week and lots of medication to take at home. The hardest part has been the steroid withdrawal (every three weeks) which is quite painful for several days. It also causes swelling, especially in the face. So that's fun.
I will leave you with this CBC story from last January and a somewhat cheesy but fitting quote I found on Instagram.
Thank you for writing this Sarah! We rarely get to read the thought processes that our friends and family are going through and their perspective on life and the challenges they face. SO I hope you keep writing, and I'll keep reading! Love Jxx