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, viagra order a rare blood cancer. I had completed chemo three times before and didn’t feel this would be anything different. Boy, site 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.

[soundcloud url=”https://api.soundcloud.com/tracks/141461182″ params=”color=ff5500&auto_play=false&hide_related=false&show_artwork=true” width=”100%” height=”166″ iframe=”true” /]

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.

[embedplusvideo height=”388″ width=”640″ editlink=”http://bit.ly/1gB0Duk” standard=”http://www.youtube.com/v/3nruGRzpdUI?fs=1″ vars=”ytid=3nruGRzpdUI&width=640&height=388&start=&stop=&rs=w&hd=0&autoplay=0&react=1&chapters=&notes=” id=”ep6687″ /]

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.

About tyfn

From December 2019 I've been on Darzalex (daratumumab) IV chemo with Velcade (Bortezomib) injection chemo + dexamethasone. Have Multiple Myeloma + anemia, a rare incurable cancer of the immune system. Life goal: To spread awareness about Multiple Myeloma through my self-portraits. UBC MSc Grad.
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3 Responses to Why I’m taking a Cancer Sabbatical

  1. Pingback: Canadian Cancer Society: April is Daffodil Month - Fade to Play

  2. Sarah says:

    Hi there! I hope this comment finds you in good health and that you are still enjoying each and every beautiful day. (Literally & metaphorically, as it’s spring and everything’s looking like Disney movie wonderland, hehe)

    My mom has MM too, and it has crushed 3 of her vertebrae and attacked some of her ribs. She went on just one round of Velcade recently — 5 shots combined with Dex — and she just can’t do it anymore. She’s also going through a benzodiazepine withdrawal and it’s just too much in combination. Throwing up last night and having waste that’s meant to be solid come out like a garden hose — something’s wrong with that picture.

    It’s in her & God’s and my hands now – we’re doing energy/hands-on healing together, she’s eating some Budwig mixtures here and there, and has some curcumin if she wants to start that protocol up again. While she was doing Velcade, they told her to stop the curcumin.

    Reading about how much chemo you’ve been through is truly difficult. No one should have to experience that, and yet you’ve endured and seem so much happier. You have the resiliency one needs to survive this.

    You are so right about the stress thing. For mom, it was her nursing job that kept demanding more and more of her and made her dread it hours in advance and replay it in her head hours after a shift.

    Have you ever heard of Margaret’s Corner? It’s a lady who has smoldering myeloma since 2006ish as well and she just uses curcumin to keep hers stable. She has no CRAB symptoms. My mom’s myeloma was stable for a year just doing a cottage cheese & flax oil protocol until her stress levels got so high at work (a new boss that was from the pits of hell) that her back and ribs just could not take the pain anymore. Trip to the doctor, BAM, it looked bad. So no more stressful job for her. Less money too. But we are going to do what it takes to give her the best chance because she’s neglected the happiness of her soul practically her entire life because that’s what the world said to do back then and it has stuck with her. She’s 64.

    There’s also an interesting man by the name of the Geordie Healer (also a blog) who cured his MM twice by just mostly using the soul/mindfulness approach. I’m amazed at how little doctors seem to know about this disease still and how much people have to suffer just to be a candidate for a less-than-dependable stem-cell transplant. That’s what was being pushed at my mom just days within having to quit her job – her worst fear ever.

    The doctors in the U.S. don’t care if you live until your old age in good health and see your grandchildren, they just want you on their drugs monthly for the rest of your miserable life.

    Hope you stay the course and stay strong. I believe you are and can and will from reading your posts here. Hope you may check out the others with the same disease who are taking different approaches, as mainstream medicine is good in some areas and totally backward in others. I think truly in about 30 years they will look back and say how we treated cancer patients was barbaric, the same way we view bloodletting today.

    Take care and I wish you the best of health and happiness, and a very, very long & fulfilled life ahead 🙂

    • tyfn says:

      Thanks for your response. Yes, chemo has been difficult, but I think of everything in life as being relative. There are many people that have had a tougher road dealing with cancer and in the end I’m still alive and focused on happy thoughts each day to lengthen the time I need to go back on chemo. Yes, I believe decrease stress in life is key, especially when dealing with a terminal illness like Multiple Myeloma. I have not heard of Margaret’s Corner. I will check it out. Thanks for your support.

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