Twenty-thirteen was a very challenging year. Having nine months of chemo and the related side effects have profoundly altered my perspective on living with cancer. One lesson that resonates with me is the importance of having close friends willing to be there for you unconditionally. A number of times a friend threw me a life buoy when I was overwhelmed with side effects that seemed neverending. I don’t know how I would have made it through chemo without them.
The other lesson I learned is that my camera is my BFF – essential in helping me cope with the challenges of cancer. Photography brings a ray of light into my life. During the spring when I was bedridden, often in too much pain to even lift my camera, I felt lost. Everyday I’m thankful my XSi still snaps away, although it doesn’t always work properly. It is time to look back and reflect on the photos that defined my year.
On Feb 5th, 2013 I had a blood test. I knew that if my cancer levels spiked again, that my specialist would call me with the news. The next day, my specialist called and I booked an appointment for the next week. During my appointment, I found out my cancer levels had spiked from 46.8 in September to 62.2. There was no more waiting. I asked for a week to collect my thoughts and mentally prepare for chemo again. This request was granted and the following week I began my 4th chemo treatment, receiving weekly Velcade subcutaneous injections in the stomach.
I was pretty nervous all week. Chemo should be something I can handle pretty easy by now, but I somehow felt a premonition that this time would be different. My cancer levels had been going up over the previous six months, coupled with mental tasks becoming increasingly challenging and my anemia causing fatigue that limited my abilities to interact. Chemo is a unique beast, I read about possible side effects from my treatment, but that doesn’t mean much because really it affects everyone differently. I have always found that my chemo treatment has been accompanied by some out-of-left-field side effects that could result in permanent damage or worse.
I wanted this chemo to be different from the previous treatments and decided I would use social media (YouTube, Soundcloud, Blog, Flickr, and Pinterest) to document everything as much as possible. My objective was to provide a platform to better help educate patients and caregivers. In addition, I hoped that doing something creative would help keep my mind active and increase the likelihood I wouldn’t just lie in bed feeling unhappy. I decided to take some of the pills (dexamethasone + cyclophosphamide) I weekly consume and arrange them into the particular week it was of my treatment.
As I sat waiting for the nurse to bring my first chemo injections so many thoughts went through my head:
Afterwards, I took the bus home and resolved to spend the next day taking a walk on Wreck beach to help clear my head while using the opportunity to take a self-portrait.
Although this photo was taken Feb 22nd, it wasn’t uploaded until March 24th. This period of my life I want to forget, I have never been in so much pain in my life – and I have a high tolerance for pain. Over these four weeks I was mostly bedridden, where simple movements of a leg or arm would cause a shooting pain in my back or side. I lost weight as I had difficulties opening my fridge or reaching the cupboards. Trips to the bathroom were an adventure as they involved me being hunched over moving each leg manually.
My specialist was unclear as to why I was in such back and side pain, whether it was related to the chemo treatment or just a common side effect of having Multiple Myeloma. An X-ray test was inconclusive, however a CT Scan was ordered to look at my Thoracic Spine.
My pain didn’t let up, even as I was prescribed pain killers that increased in intensity up to hydromorphone. I was very thankful to have the option to take a free Cancer Car to my weekly appointments during this time. It took all my willpower to make it from my bed to the waiting car.
Eventually the pain just stopped, which surprised me, but hey – no pain is good right? However, it was unclear why the pain occurred in the first place. The following month a CT scan revealed something alarming. Apparently, as happens with Multiple Myeloma, cancer appeared in the bone marrow of my T7 vertebrae causing it to collapse. The overwhelming pain was due to the collapsing process and when it flattened as a pancake the pain stopped. This can happen again in the future to another vertebrae, so my fingers are crossed that it doesn’t.
As spring turned into summer, I settled into a routine of weekly pills and chemo treatment.
At the same time I enjoyed going outside when I felt well enough to take self-portraits around UBC.
In November, I had a flu shot on the advice of my specialist as I’m in a high risk group. It was pretty convenient as Risk Management Services on campus provided free flu shots for students, staff, and faculty that registered through the month.
Finally that month, after 40 weeks (8 cycles) of treatment, it was time for my last Velcade chemo injection. In total I had 64 injections over 32 weeks. It felt really good to be done treatment. I’m still recovering from treatment both mentally and physically and am focused on positive thinking so that chemo treatment won’t happen again for a while.
Following my treatment, I had a final blood test, which showed my cancer levels (igG) had dropped from 62.2 pre-treatment to 7.1 post-treatment.
Just to give a recap, I’m living with a rare blood cancer called Multiple Myeloma. From February to November 2013, I was on my 4th chemo treatment called Velcade, where I had weekly in-hospital injections, in addition to a variety of other pills taken to supplement my chemo treatment. You can read the background on my diagnosis and previous treatments on an earlier blogpost. You can also follow me on twitter.
Photos from my most recent self-portrait project are on flickr.
You can also view the complete set of photos related to my treatment here.