Canadian Cancer Society: April is Daffodil Month

On Tuesday, when I was in the Waterfront Station I came across some Canadian Cancer Society – British Columbia and Yukon Division volunteers that were taking donations for daffodils as well as offering boxes of Krispy Kreme donuts for a larger donation. As someone living with Multiple Myeloma, a blood cancer, it makes me happy whenever I see someone wearing a daffodil – it is like they are sending me a personal message saying “Stay strong!”.

April is Daffodil Month at the Canadian Cancer Society:

To some the daffodil is just a flower. For us, it is a symbol of strength and courage. It says we will not give up. It says we will fight against cancer and we will win.

Buy a daffodil pin and show your support for people living with cancer.

Throughout April, compassionate volunteers across Canada work together to raise funds for the Canadian Cancer Society.

Later in the day I passed a daffodil and paused for a moment to reflect on my own personal battles with cancer. Thankfully I’m in remission right now and coming to the end of my medical leave from my studies. In May I plan to take a further break to focus on my Cancer Sabbatical, where I will direct my energy towards cancer-related personal initiatives.

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.

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Why I’m taking a Cancer Sabbatical




The Past
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.

Monthly Blood Test

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.




The Present
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:

Protein Lab Results (g/L)
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
Mar 2.8 7.0 8.9 .31 .33
Feb 2.8 6.4 7.7 .24 .38
Jan 3.0 6.2 7.5 .17 .33
Nov 3.5 5.1 7.1 .14 .10
Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Mar 2.0 135 211 0.8
Feb 2.0 132 208 0.9
Jan 1.9 124 217 0.7
Nov 2.2 118 220 1.1

I was pretty excited about the good news, so following my specialist appointment I made a video and posted it to YouTube.



The Future
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 (internet@fadetoplay.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.

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Rare Disease Day: You are not alone

Watching the sunset by the water
Watching the sunset

Friday is Rare Disease Day. It is a day of awareness to remind the world that there are people living with rare or undiagnosed diseases. According to the Rare Disease Foundation:

A rare disease is defined as a condition affecting fewer than 1 in 2000 people. There are more than 7000 diagnosed rare diseases and many more undiagnosed diseases. Nearly three million Canadians have a rare disease.

I have Multiple Myeloma, a blood cancer, that is a rare disease. According to the Canadian Cancer Society, it is estimated that there are 187 600 new cases of cancer diagnosed in Canada in 2013, of those 2500 are Multiple Myeloma (1400 men, 1100 women). This represents about 5 in 100 000 people.

Having Multiple Myeloma can be pretty challenging. I’ve been documenting my life with cancer on this blog and using photography for storytelling and healing. What has also helped me cope is the community I have found online, such as the health care communities on twitter (e.g. #hcsmca, #medx, #mmsm) that I engage in.

With a rare disease you can feel like you’re the only one that understands your struggles, your pain, your feelings. Reaching out to like-minded people, I have become empowered and mentally stronger through the support, advice, and education I’ve received.

To everyone dealing with a rare disease, you are not alone!

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

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Living with Multiple Myeloma: My cancer levels have increased slightly

Cancer Levels increased againHigher cancer levels

As I spoke about yesterday, I had my blood test and I was waiting on the results. Today I have them. My cancer levels have slightly increased again from 7.0 in November (post-chemo), to 7.5 in January, to 7.7 yesterday. Thankfully, they are still pretty low (recall they were 62.2 a year ago before chemo). I have monthly (every 5 weeks) blood tests so that my cancer levels can be monitored. I finished chemo treatment mid-November for my Multiple Myeloma and it is important to watch when my cancer levels spike again or get too high so that appropriate action (re: chemo again) can be initiated.

I’m focused on remaining positive and trying to reduce stress in my life. I wish I could go to the forest and grab a picnic basket labelled “eat this to stop your cancer levels rising”. Sadly, that isn’t possible, so I’m doing what I can with positivity in my life, using my camera as a healing tool.

Blood Test Results
Test Result Units
WBC 2.0 giga/L
RBC 4.81 giga/L
Hemoglobin 132 g/L
Hematocrit .40
MCV 83 fL
RDW 12.5 %
Platelets 208 L
MPV 10.4 fL
Neutrophils .9 giga/L
Lymphocytes .7 giga/L
Monocytes .3 giga/L
Eosinophils .1 giga/L
Basophils .0 giga/L
IgG 7.70 g/L
IgA .24 g/L
IgM .38 g/L
Total Protein 74 g/L
Albumin 51.4 g/L
Alpha 1 Globulin 1.6 g/L
Alpha 2 Globulin 6.8 g/L
Beta 1 Globulin 5.0 g/L
Beta 2 Globulin 2.8 g/L
Gamma Globulin 6.4 g/L

I haven’t made a youtube video in a while so I thought I would share some thoughts about my latest blood test results with you.



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

Sunset in a UBC ForestFall sunset at UBC

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Living with Cancer: Monthly blood test today, waiting on latest cancer numbers

I just got back from having my monthly (every 5 weeks) blood test. Since my Velcade chemo ended for Multiple Myeloma in mid-November, it is necessary to have ongoing blood tests so that my specialist can monitor my ongoing cancer levels. I should know tomorrow what the full results are.

Cancer-12I have had so many blood test since my cancer diagnosis. It is always weird for me the day of a blood test, I always do it in the morning, so I can get it over with. I just had a piece of toast for breakfast and a little bit of water before heading to the lab. When I got to the lab, I waited a bit before my name was called. This experience wasn’t the greatest today.

As is the norm, he first tried to draw blood from my left arm. I really hate needles, so I always look away and try and take my mind to a happy place. I need 5 vials of blood for the multitude of tests done, but only one was able to be drawn from the left arm. I never use my right arm for blood tests, because it is pretty tapped dry from previous use, but I had to make an exception this time. It took longer to get out the blood, but eventually we had 5 vials in total. However, I’m going to be sticking to my left arm for the future, unless absolutely necessary.

I made a soundcloud about my experience today.

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

Watching the sunsetWatching a summer sunset

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