I took this photo 13 months ago on UBC Wreck Beach the day before I began 9 months of chemo treatment for Multiple Myeloma, a rare blood cancer. I had completed chemo three times before and didn’t feel this would be anything different. Boy, was I wrong. Spending most of the year on chemo changed me in a number of ways, both mentally and physically, as I battled the severe side effects, which affected my ability to function on a day to day basis. Without a doubt, 2013 was an incredibly challenging year. Since completing chemo I have been constantly stressing about my cancer levels, worried about when treatment would be thrust upon me again, wondering what I could do to postpone experiencing ‘Day 1 Chemo Treatment’ anytime soon.
Every month I have a blood test so that the progress of my cancer levels can be monitored. If there are any problems or concerns, I would be contacted so that the necessary steps could be taken. What is beneficial is that I can go online and view or download my full lab results the next day using a free service available to BC residents called MyeHealth. So, knowing my results when I walked into my specialist’s office was helpful and alleviated some of the stressfulness I experienced when this wasn’t available.
The day of my specialist appointment always feels a little surreal. I try and minimize social interaction because my mind is just elsewhere. I wasn’t happy that my cancer levels seemed to be slowly increasing (7.7 igG in Feb to 8.9 igG in March), but rationalized that it was expected as I wasn’t getting chemo treatment. I felt a little sad that reducing stress in my life by focusing on my love of photography hadn’t kept my cancer levels stable as I had hoped. Just before I saw my specialist I sat outside the BC Cancer Agency and shared some thoughts via Soundcloud.
It turned out that seeing my specialist was actually a really good thing. When I went in and explained how I was feeling down because my cancer levels had continued to increase post-chemo (I thought the igG was the most relevant measure of my cancer levels), I got a curious reply. My specialist stated being pleased with my blood test results and clarified how my particular type of Multiple Myeloma, was more unique as there wasn’t one particular way to determine my cancer levels.
For many Multiple Myeloma patients, increased cancer levels are manifested through an M-Spike (see Myeloma Canada and The MMRF for helpful explanation of this) M-Spike,when too much of the same immunoglobulin (e.g. igA or igG) is produced. Immunoglobulin are proteins in the blood. When plasma cells are exposed to foreign substances, they produce different antibodies. These antibodies are referred to as immunoglobulin. However, in my case, I don’t show an M-Spike in my blood. In fact, there isn’t any one way to measure my cancer levels.
Looking at the igG by itself isn’t a valid measure for me. The average person has an igG in the teens, so mine being 8.9 is ok. In addition, my igA has been increasing each month since my chemo ended. However that is good, that means I have more healthy cells and less cancer cells in my blood. As well, my Gamma Globulin is in the normal range and has been increasing each month.
So long story short, my cancer is in remission. It is a message that how I’m living my life should continue. I feel like I’m playing hide ‘n seek with my cancer and right now I’m winning.
To celebrate, being in remission, I have placed an R on my door. I don’t need to worry about numbers right now. Instead, I’m focused on the alphabet. Here are my lab results (every 5 weeks) since ending chemo:
|Date||Beta Globulin II||Gamma Globulin||igG||igA||igM|
|Reference Range||1.8 – 4.8||5.1 – 15.0||6.7 – 15.2||.70 – 4.00||.40 – 2.30|
|Reference Range||4.0 – 11.0||135 – 170||150 – 400||2.0 – 8.0|
I was pretty excited about the good news, so following my specialist appointment I made a video and posted it to YouTube.
The fact my cancer is in remission 4 months after my chemo treatment is a sign that removing stress from my life, putting my heart and soul into photography (recall my 2012 SuperBetter project), learning more about healthcare through events and tweetchats (e.g. #hcsmca and #medx), and educating myself about my Multiple Myeloma is the right path for a healthy future. Stress feeds my Multiple Myeloma and I won’t do things in my life that clearly place me on a quicker path to treatment in the future. So change will begin May 1st with my Cancer Sabbatical.
What is that you ask?
A sabbatical leave is taken by a person in order to reinvigorate and restore their energy, during which the person may travel, use the time to pursue creative interests, or focus on intellectual discovery and personal development. I’m going to take a break from the stressful life I’ve lived and embrace one where I feel fulfilled, happy, and healthy. Three areas of interest for me are:
Photography – Exploring how photography may be a creative tool for health and healing in people living with cancer
Tech + Cancer – Exploring how emerging technologies may be used to help people living with cancer thrive in their everyday life
Healthcare – Exploring how emerging technologies may be used to improve the patient/healthcare practitioner relationship.
If anyone would like to support my Cancer Sabbatical in some way, don’t hesitate to contact me (email@example.com or @tyfn) on twitter. You could provide advice (e.g. good books to read or share names of those that inspire you), financial support (e.g. help with living expenses or sponsorship to attend a conference), or social interaction (e.g. go on a photowalk adventure with me). Let’s be friends!
I’m excited for the journey ahead. In matter of love, a common piece of advice to ‘follow your heart’. For my Cancer Sabbatical, I’m going to ‘follow my health’.
Dream. Do. Share.