Living with multiple myeloma: Today is Rare Disease Day

information pills on Flickr”>Completed Cycle 1 Week 2: Knocked down by chemo fatigueAll I want to do is sleep

It was a rough weekend. On Friday evening I began experiencing intense chemo fatigue that I hadn’t felt since my last chemo treatment (Velcade/dex) in 2013. It seemed to come out of nowhere. It became further compounded with a bad cold that caused headaches and drained me of energy. Thinking, visit moving, order or talking was challenging. On Saturday I struggled to keep my eyes open for more than 5 minutes at a time, instead opting for sleep, knowing how important rest was for my health and well-being. As dawn broke on Sunday, the fatigue seemed to have left my body. I felt refreshed and re-energized. I’m really glad that’s over, I’m hopeful that Week 3 will be better.

On Sunday I completed Cycle 1 Week 2 of Pomalyst chemo + dexamethasone for my multiple myeloma and anemia. For 21 days out of every 30 I take a chemo pill (4mg) and every 7 days I take 10 dexamethasone pills (40mg in total). Dexamethasone is an oral steroid. I didn’t have much hiccups at all during the week. Only a couple of times Monday and Tuesday for a few minutes. Overall, I’m happy with how I’m handling this treatment.

I’m facing any adversity with a smile!

I love photography and use self-portraits to help improve my health and well-being. Taking pictures brings me happiness. Each week I will be taking a self-portrait that represents some aspect of my experiences on chemo.

To recap: I have Multiple Myeloma and anemia, a rare blood cancer. It is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. From February 9th 2015, I am on Pomalyst and dexamethasone chemo treatment (Pom/dex).

End of the day on Granville IslandMay 2014: Granville Island

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on Flickr”>Waiting for a blood testJuly 2014: Waiting for a blood test

February 28th is Rare Disease Day.

I have multiple myeloma and anemia, ailment a rare disease. Multiple myeloma is a cancer of the plasma cells, white blood cells in the bone marrow, usually responsible for producing antibodies to help fight infections. 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. About 1 in 12 people (nearly three million Canadians) have a rare disease. Most known rare disorders are severe and chronic, with many being degenerative and life threatening.

Multiple myeloma is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. From February 9th 2015, I am on Pomalyst and dexamethasone chemo treatment (Pom/dex). For 21 days out of every 30 I take a chemo pill (4mg) and every 7 days I take 10 dexamethasone pills (40mg in total). Dexamethasone is an oral steroid.

I love photography and use self-portraits to help improve my health and well-being. Taking pictures brings me happiness.

Staying positive!

Watching the sunrise at UBC on New Year's DayJanuary 2014: First sunrise of the year

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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