Living with Multiple Myeloma: Memory and recognition problems

A walk in the parkSuch a comfy sweater

Over the last few years, one of the side effects I’ve noticed of having Multiple Myeloma, a rare blood cancer, is that my memory has depreciated. This has been most apparent when I try and recall a friend’s name or try to remember a fact during a conversation (e.g. the author’s name when recommending a good book to read). To help counteract this, what I do is write things down in the memopad on my Blackberry. I rarely do social gatherings anymore, but in the past if I was invited to a party I would make an entry “Doug’s Party – June 4, 2011″ and then write down the different people I met. Similarly, I have an entry labelled “Library” and would list anyone I met there over time. Before I would enter the building, I would just give a quick look through, so I would remember the person’s name when I saw them. I found this to be an effective strategy to help with my memory.

A larger concern is that my face recognition is really off since my last chemo. I may meet someone today and then an hour from now, I won’t recognize them. Or I found that I don’t always recognize people that I used to know in the past. I just chalk this up, to one of the overall side effects of multiple chemo treatments.

I was reflecting on this today based on what occurred a few days ago. Somehow I completely misplaced my favourite sweater. It is the only one I have that isn’t frayed or ripped so I wear it daily as it keeps me warm when I’m feeling cold. Plus, it is a black zippered hoodie so it fits with anything really. I’ve found that one of the side effects of multiple chemo treatments is that my core body temperature has lowered. When it went missing, I panicked a bit, and tried to retrace my steps without success. However, I’m also in a happy period, since I’m cancer-free, so I didn’t freak out too much. The next day, I decided to try a grocery store I had visited when I needed some toothpaste, and thankfully someone had turned it in. What was odd is that somehow I completely forgot about it for some 30 minutes while travelling in the city. Total memory fail.

Life lesson: Be more careful with my things. Next time it could be my wallet or camera.

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 extensive background on my diagnosis and previous treatments on earlier blogposts in 2012 and 2014. I am also on twitter.

I’ve been cancer-free since Nov 23, 2013 and using photography for my personal health and healing so that my cancer remains undetectable for a long, long time.

Watching the water at Wreck BeachWreck Beach – January 2014

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I’m now without a computer…goodbye macbookpro

A moment with my macbookproMy last photo with my laptop

On the same day that I found out I was 7 months cancer-free, I received some equally devastating news. My macbookpro that I’ve had for a little over 3 years has stopped functioning and needs a new motherboard. Unfortunately the $600 cost means that I will not be able to repair it. Instead I will be without a computer for a while, maybe until sometime in 2015. So although I’m really happy that my health continues to improve, it is unfortunate that I won’t be able to work on my photography as much as I’d like. In the meanwhile, I’ll be seeking out public computers around Vancouver to get things done.

Getting work doneBeing productive

It is true that good health > functional laptop, but I do with I could have both in my life.

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Cancer Update: 7 months in complete remission and getting healthier every day

Sunlight becoming sunsetSunlight becoming sunset

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 as an outpatient, in addition to a variety of other pills taken to supplement my chemo treatment. It was an incredibly difficult treatment and I’m truly thankful to be done. Pre-blood test

You can read the background on my diagnosis and previous treatments in earlier blogposts in 2012 and 2014. I’m tyfn on twitter. 6773029276_136b952721_z

Last week I travelled to the lab to get bloodwork done. It was quick and painless, which is always a positive. These blood test results were especially important as I would be seeing my specialist the following week. I have blood tests every 5 weeks and I have appointments with my cancer specialist every 3 months. It really helps with my stress level being able to go online the next morning to see my results, thanks to myehealth, a health service available to some residents in British Columbia.

Here are my lab results from November (post-chemo) to June (last week):

Serum Proteins (Electrophoresis & Immunoglobulins) (g/L)
Date Albumin Beta Globulin 2 Gamma Globulin igG igA igM
Reference Range 34.0-53.0 1.8 – 4.8 5.1 – 15.0 6.7 – 15.2 .70 – 4.00 .40 – 2.30
June 45.3 4.0 6.6 9.9 .33 .30
May 46.5 3.5 7.3 9.2 .33 .26
Apr 47.9 2.8 7.0 9.2 .28 .23
Mar 48.3 2.8 7.0 8.9 .31 .33
Feb 51.4 2.8 6.4 7.7 .24 .38
Jan 47.6 3.0 6.2 7.5 .17 .33
Nov 45.6 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
June 3.4 135 265 1.8
May 3.2 138 294 1.5
Apr 2.3 137 243 0.9
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

When I saw my specialist this week, I was in for an eye-opener. I found out that my Protein Electrophoresis values are very good. These markers are how people are identified as having Multiple Myeloma. There are 6 measures broken into two components (Albumin, the major component and Globulins, the minor components). The Globulins consist of Alpha 1, Alpha 2, Beta 1, Beta 2, and Gamma. When visible in a pattern, they make up 5 bands (Albumin, Alpha 1, Alpha 2, Beta, Gamma). The Serum Protein Immunoglobulins consist of IgG, IgA, and IgM.

As shown in the figures below from the 2005 Understanding and Interpreting Serum Protein Electrophoresis article, a normal pattern means that Multiple Myeloma isn’t detected in the blood stream.

Normal Pattern Figure 1: Typical normal pattern for serum protein electrophoresis

If they form an abnormal pattern, as shown by the large spike in the gamma region, then that is likely to indicate Multiple Myeloma.

Abnormal pattern Figure 2: Abnormal serum protein electrophoresis pattern in a patient with multiple myeloma.

If you look at the Serum Protein table above, you’ll note that my Beta 2 (4.0) and Gamma (5.1) are in the normal range. My Serum Protein Electrophoresis pattern for the 5 bands looks normal (as in Figure 1). In addition, my specialist noted that my Serum Protein Immunoglobulins values are all trending upward (re: improving) into the normal range, since I finished chemo last November. For example: igG (Nov) 7.1, (Jun) 9.9; igM (Nov) .10, (Jun) .30; igA (Nov) .14, (Jun) .33. The upward trend means that normal protein is being produced, when Multiple Myeloma is active in the blood stream, these values are suppressed.

My specialist observed that my overall health has also been improving, becoming more and more normal (see Hematology Profile table) – e.g. White Blood Cells (Nov) 2.2 (Jun) 4.0; Neutrophils (Nov) 1.1 (Jun) 1.8. I actually had the best response possible to my treatment and there is “no detectable myeloma in the blood stream”. I had to get those words repeated because I was under the impression that I had a partial remission, like in previous treatments. I’m going to make November 23rd the day I became cancer-free as I ended chemo the day before. Everything is sunshine and rainbows.

What this means is that I should keep doing what I’m doing. After 7 months to still be in remission absolutely rocks. I will continue to use my photography for health, healing, and happiness through self-portraits and personal projects that enhance my creativity. I know that photography is playing a large role in my happiness and helping keep my multiple myeloma from reappearing in my blood.

Life goal = Remain cancer-free.

Watching the sunsetWatching the sunset on Wreck Beach

Here are some recent photos.

Visualizing CommerceVisualizing Commerce

StevestonSteveston Harbour

River Rock Casino MarinaRiver Rock Casino Marina

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Health Update: Still in remission and feeling great

Still R

It has been a few months since I have given a health update after beginning my Cancer Sabbatical.

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 earlier blogposts in 2012 and 2014. You can also follow me on twitter.

I am feeling great and enjoying life. I have had blood tests every 5 weeks and my cancer levels are still low and I’m happy to report that I’m still in remission. I feel so alive every day, focused on extending my “between chemo periods” life as long as possible. I have enjoyed chatting with people around Vancouver, taking photos, and just stopping and reflecting on how amazing life is.

Here are my cancer levels from Nov (end of chemo) until last month:

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
May 3.5 7.3 9.2 .33 .26
Apr 2.8 7.0 9.2 .28 .23
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
May 3.2 138 294 1.5
Apr 2.3 137 243 0.9
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’m continuing to use photography as therapy for health and healing. Photography is keeping my cancer levels low and helping extend my remission period. Here are some photos taken over the last couple of months.

Granville Island mailboxes

Cyclist on Fraser River bike path

Lonsdale Quay Market – North Vancouver


Downtown Vancouver

If anyone would like to help me 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 photography expenses or sponsorship to attend a health care event), or social interaction (e.g. go on a photowalk adventure with me).

Let’s be friends!

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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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